Publisher:

National Coalition for Hospice and Palliative Care

Clinical Practice Guidelines for Quality Palliative Care, 4th edition

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our efforts to advance understanding of issues related to hospice and

palliative care. No part of this publication may be reproduced, stored in a

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Disclaimer: The National Coalition for Hospice and Palliative Care

assumes no responsibility or liability for any errors or omissions in the

National Consensus Project’s Clinical Practice Guidelines for Quality

Palliative Care, 4th edition. The information contained is provided on an “as

is” basis with no guarantees of completeness, accuracy, usefulness or

timeliness and without any warranties of any kind whatsoever, express or

implied. The information is intended for non-commercial use for the user

who accepts full responsibility for its use. While the National Coalition for

Hospice and Palliative Care has taken every precaution to ensure that the

content is current and accurate, errors can occur.

Adherence to these guidelines will not ensure successful treatment in every

situation. Furthermore, these guidelines should not be interpreted as setting

a standard of care, considered to be medical advice, or be deemed inclusive

of all proper methods of care nor exclusive of other methods of care

reasonably directed to obtaining the same results. The ultimate judgment

regarding the propriety of any specific therapy must be made by the

physician and/or health care provider and the patient in light of all the

circumstances presented by the individual patient, and the known variability

and biological behavior of the disease. These guidelines reflect the best

available data and information at the time the guidelines were prepared. The

results of future studies may require revisions to the recommendations in

these guidelines to reflect new data or information.

ISBN # 978-0-692-17943-7

For information, contact:

National Coalition for Hospice and Palliative Care

P.O. Box 29709

Richmond, VA 23242

http://www.nationalcoalitionhpc.org/

https://www.nationalcoalitionhpc.org/ncp

Suggested Citation:

National Consensus Project for Quality Palliative Care. Clinical Practice

Guidelines for Quality Palliative Care, 4th edition. Richmond, VA: National

Coalition for Hospice and Palliative Care; 2018.

https://www.nationalcoalitionhpc.org/ncp.

Table of Contents
Foreword
Palliative Care
History of the National Consensus Project’s Guidelines
NCP Guidelines, 4th edition
Introduction to the 4th edition
Summary of Key Revisions in Each Domain
Systematic Review of Key Research Evidence
Key Concepts / Definitions
Using the NCP Guidelines
Conclusion
Acknowledgments
Domain 1: Structure and Processes of Care
Guideline 1.1  Interdisciplinary Team
Guideline 1.2  Comprehensive Palliative Care Assessment
Guideline 1.3  Palliative Care Plan
Guideline 1.4  Continuity of Palliative Care
Guideline 1.5  Care Settings
Guideline 1.6  Interdisciplinary Team Education
Guideline 1.7  Coordination of Care and Care Transitions

Guideline 1.8  Emotional Support to the Interdisciplinary
Team
Guideline 1.9  Continuous Quality Improvement
Guideline 1.10  Stability, Sustainability, and Growth
Clinical and Operational Implications
Essential Palliative Care Skills Needed by All Clinicians
Key Research Evidence
Practice Examples
Domain 2: Physical Aspects of Care
Guideline 2.1  Global
Guideline 2.2  Screening and Assessment
Guideline 2.3  Treatment
Guideline 2.4  Ongoing Care
Clinical and Operational Implications
Essential Palliative Care Skills Needed by All Clinicians
Key Research Evidence
Practice Examples
Domain 3: Psychological and Psychiatric Aspects of
Care
Guideline 3.1  Global
Guideline 3.2  Screening and Assessment
Guideline 3.3  Treatment
Guideline 3.4  Ongoing Care
Clinical and Operational Implications
Essential Palliative Care Skills Needed by All Clinicians

Key Research Evidence
Practice Examples
Domain 4: Social Aspects of Care
Guideline 4.1  Global
Guideline 4.2  Screening and Assessment
Guideline 4.3  Treatment
Guideline 4.4  Ongoing Care
Clinical and Operational Implications
Essential Palliative Care Skills Needed by All Clinicians
Key Research Evidence
Practice Examples
Domain 5: Spiritual, Religious, and Existential Aspects
of Care
Guideline 5.1  Global
Guideline 5.2  Screening and Assessment
Guideline 5.3  Treatment
Guideline 5.4  Ongoing Care
Clinical and Operational Implications
Essential Palliative Care Skills Needed by All Clinicians
Key Research Evidence
Practice Examples
Domain 6: Cultural Aspects of Care
Guideline 6.1  Global
Guideline 6.2  Communication and Language

Guideline 6.3  Screening and Assessment
Guideline 6.4  Treatment
Clinical and Operational Implications
Essential Palliative Care Skills Needed by All Clinicians
Key Research Evidence
Practice Examples
Domain 7: Care of the Patient Nearing the End of Life
Guideline 7.1  Interdisciplinary Team
Guideline 7.2  Screening and Assessment
Guideline 7.3  Treatment Prior to Death
Guideline 7.4  Treatment During the Dying Process and
Immediately After Death
Guideline 7.5  Bereavement
Clinical and Operational Implications
Essential Palliative Care Skills Needed by All Clinicians
Key Research Evidence
Practice Examples
Domain 8: Ethical and Legal Aspects of Care
Guideline 8.1  Global
Guideline 8.2  Legal Considerations
Guideline 8.3  Screening and Assessment
Guideline 8.4  Treatment and Ongoing Decision-Making
Clinical and Operational Implications
Essential Palliative Care Skills Needed by All Clinicians
Key Research Evidence

Appendix I: Glossary
Appendix II: Tools and Resources
Domain 1: Structure and Processes of Care
Domain 2: Physical Aspects of Care
Domain 3: Psychological and Psychiatric Aspects of Care
Domain 4: Social Aspects of Care
Domain 5: Spiritual, Religious, and Existential Aspects of
Care
Domain 6: Cultural Aspects of Care
Domain 7: Care of the Patient Nearing the End of Life
Domain 8: Ethical and Legal Aspects of Care
Appendix III: Contributors
Appendix IV: Scoping Review
Scoping Review Methodology
Review and Inclusion Process
Domain 1: Structure and Processes of Care
Domain 2: Physical Aspects of Care
Domain 3: Psychological and Psychiatric Aspects of Care
Domain 4: Social Aspects of Care
Domain 5: Spiritual, Religious, and Existential Aspects of
Care
Domain 6: Cultural Aspects of Care
Domain 7: Care of the Patient Nearing the End of Life
Domain 8: Ethical and Legal Aspects of Care

Appendix V: Endorsing and Supporting Organizations

A systematic review of the evidence for the NCP Guidelines, 4th edition,

was conducted by the RAND Evidence-based Practice Center. The

complete findings are published online in the Journal of Pain and

Symptom Management (doi: 10.1016/j.jpainsymman.2018.09.008).

Foreword

Individuals who are seriously ill need care that is seamless across settings,

can rapidly respond to needs and changes in health status, and is aligned

with patient-family preferences and goals. Patients of all ages, living in all

areas of the country, have unmet care needs that cause a burden on families

and the US health care system.

Providing “crisis-care” to individuals with a serious illness whose ongoing

care needs are poorly managed has resulted in increased health care

spending that does not necessarily improve quality of life. Care of

individuals with serious illness is often “marked by inadequate symptom

control and low patient and family perceptions of the quality of care; and

potentially discordant with personal goals and preferences.”1 Patients with

serious illness and their family caregivers are seldom able to have their care

needs reliably met, leading to symptom exacerbation crises and emergency

department visits and/or repeated hospitalizations.2

In this document, serious illness is defined as “a health condition

that carries a high risk of mortality and either negatively impacts

a person’s daily function or quality of life or excessively strains

their caregiver” (Kelley and Bollens-Lund, 2018).

Palliative Care

Palliative care focuses on expert assessment and management of pain and

other symptoms, assessment and support of caregiver needs, and

coordination of care. Palliative care attends to the physical, functional,

psychological, practical, and spiritual consequences of a serious illness. It is

a person- and family-centered approach to care, providing people living

with serious illness relief from the symptoms and stress of an illness.

Through early integration into the care plan for the seriously ill, palliative

care improves quality of life for the patient and the family.

Palliative care is:

• Appropriate at any stage in a serious illness, and it is beneficial when

provided along with treatments of curative or life-prolonging intent.

• Provided over time to patients based on their needs and not their

prognosis.

• Offered in all care settings and by various organizations, such as

physician practices, health systems, cancer centers, dialysis units,

home health agencies, hospices, and long-term care providers.

• Focused on what is most important to the patient, family, and

caregiver(s), assessing their goals and preferences and determining

how best to achieve them.

• Interdisciplinary to attend to the holistic care needs of the patient and

their identified family and caregivers.

Palliative care principles and practices can be delivered by any

clinician caring for the seriously ill, and in any setting. All clinicians are

encouraged to acquire core skills and knowledge regarding palliative care

and refer to palliative care specialists as needed. Analogous to the

management of hypertension and heart disease by primary clinicians who

may turn to cardiology specialists and clinical practice guidelines for

consultation or management of more complex cases, specialist level

palliative care is available for consultation, teaching, research, and care of

the most complex patients living with a serious illness. Specialist level

palliative care is delivered through an interdisciplinary team with the

professional qualifications, training, and support needed to deliver optimal

patient- and family-centered care.

Note: Words bolded in red are defined in the Glossary

Recognizing the changes to the practice of palliative care in all care

settings, the National Consensus Project for Quality Palliative Care

defines palliative care as follows:

Beneficial at any stage of a serious illness, palliative care is an

interdisciplinary care delivery system designed to anticipate, prevent,

and manage physical, psychological, social, and spiritual suffering to

optimize quality of life for patients, their families and caregivers.

Palliative care can be delivered in any care setting through the

collaboration of many types of care providers. Through early integration

into the care plan of seriously ill people, palliative care improves quality

of life for both the patient and the family.

In addition, specific definitions of palliative care are applicable depending

on the audience and context within which the definition is used:

The 2015 Dying in America: Improving Quality and Honoring

Individual Preferences Near the End of Life report defines palliative

care as, “Care that provides relief from pain and other symptoms,

supports quality of life, and is focused on patients with serious

advanced illness and their families. Palliative care may begin early in

the course of treatment for a serious illness and may be delivered in a

number of ways across the continuum of health care settings, including

in the home, nursing homes, long-term acute care facilities, acute care

hospitals, and outpatient clinics.”3 The report explicitly states that care

outcomes are optimized when palliative care begins early after the

diagnosis of a serious illness, is delivered at the same time as curative or

disease-modifying treatments, and is available in all settings where

patients and families need care.4

The Centers for Medicare and Medicaid Services defines palliative

care as, “patient and family centered care that optimizes quality of life

by anticipating, preventing, and treating suffering. Palliative care

throughout the continuum of illness involves addressing physical,

intellectual, emotional, social, and spiritual needs and to facilitate

patient autonomy, access to information, and choice.”5

The Center to Advance Palliative Care and the American Cancer

Society developed a definition of palliative care (based on public

opinion research), “Palliative care is specialized medical care for people

with serious illness. It focuses on providing relief from the symptoms

and stress of a serious illness. The goal is to improve quality of life for

both the patient and the family.

Palliative care is provided by a team of palliative care doctors, nurses,

social workers and others who work together with a patient’s other

doctors to provide an extra layer of support. It is appropriate at any age

and at any stage in a serious illness and can be provided along with

curative treatment.”6

The Institute of Medicine (IOM) offers the following definitions

(2015):

Specialty palliative care: “Palliative care that is delivered by

health care professionals who are palliative care specialists, such

as physicians who are board certified in this specialty; palliative-

certified nurses; and palliative care-certified social workers,

pharmacists, and chaplains.”

Primary palliative care (also known as generalist palliative care):

“Palliative care that is delivered by health care professionals who

are not palliative care specialists, such as primary care clinicians;

physicians who are disease-oriented specialists (such as

oncologists and cardiologists); and nurses, social workers,

pharmacists, chaplains, and others who care for this population

but are not certified in palliative care.”

Specialist palliative care provides an added layer of support towards

maximizing patient and family quality of life during serious illness.

Palliative care knowledge and skills, however, should be core competencies

for all health professionals serving seriously ill patients and their families

and caregivers.

Hospice

Hospice is a specific type of palliative care provided to individuals with a

life expectancy measured in months, not years. Hospice teams provide

patients and families with expert medical care, emotional, and spiritual

support, focusing on improving patient and family quality of life.

To be eligible to receive hospice under the Medicare or Medicaid hospice

benefit, adult patients must have a defined, time-limited prognosis (certified

by two physicians as six months or less if the disease follows its usual

course) and desire care focused on comfort, foregoing insurance coverage

for further terminal disease-directed curative treatment efforts. The Patient

Protection and Affordable Care Act of 2010 contained provisions allowing

pediatric patients to receive disease-modifying treatment while also

receiving hospice services.

Nearly 50% of Medicare decedents received hospice in 2016,7 most of

which was provided in community settings, primarily the patient’s chosen

residence, which includes home, nursing homes and other residential

facilities, as well as skilled nursing facilities.8 Hospice is also available to

Medicaid recipients in most states and is covered as part of many

commercial health plans.

History of the National Consensus Project’s

Guidelines

Seventeen years ago, leaders from across the country gathered to discuss

the development of consensus guidelines for quality palliative care so that

patients with serious illness who were not hospice-eligible could access

palliative care. Representatives of hospice and palliative care organizations

collaborated in the development of the first edition of the National

Consensus Project’s Clinical Practice Guidelines for Quality Palliative

Care (NCP Guidelines), which described core concepts and structures and

processes necessary for quality palliative care, including eight domains of

practice.

The first edition of the NCP Guidelines, published in 2004, presented a

blueprint for excellence in the delivery of palliative care. For the first

time outside of hospice, teams had a framework to guide the development

of quality palliative care services. Since that time, palliative care has

continued to grow and evolve, necessitating updated NCP Guidelines in

2009 and 2013. The second edition of the NCP Guidelines, published in

2009, reflected the tremendous growth and transformation in the field of

hospice and palliative care, acknowledging the diverse array of models and

approaches to care for this complex population. The third edition of the

NCP Guidelines, published in 2013, emphasized continuity, consistency,

and quality of care.

The NCP Guidelines, 4th edition, are organized into 8 domains:

Domain 1: Structure and Processes of Care

The composition of an interdisciplinary team is outlined, including the

professional qualifications, education, training, and support needed to

deliver optimal patient- and family-centered care. Domain 1 also defines the

elements of the palliative care assessment and care plan, as well as systems

and processes specific to palliative care.

Domain 2: Physical Aspects of Care

The palliative care assessment, care planning, and treatment of physical

symptoms are described, emphasizing patient- and family-directed holistic

care.

Domain 3: Psychological and Psychiatric Aspects

The domain focuses on the processes for systematically assessing and

addressing the psychological and psychiatric aspects of care in the context

of serious illness.

Domain 4: Social Aspects of Care

Domain 4 outlines the palliative care approach to assessing and addressing

patient and family social support needs.

Domain 5: Spiritual, Religious, and Existential Aspects of Care

The spiritual, religious, and existential aspects of care are described,

including the importance of screening for unmet needs.

Domain 6: Cultural Aspects of Care

The domain outlines the ways in which culture influences both palliative

care delivery and the experience of that care by the patient and family, from

the time of diagnosis through death and bereavement.

Domain 7: Care of the Patient Nearing the End of Life

This domain focuses on the symptoms and situations that are common in

the final days and weeks of life.

Domain 8: Ethical and Legal Aspects of Care

Content includes advance care planning, surrogate decision-making,

regulatory and legal considerations, and related palliative care issues,

focusing on ethical imperatives and processes to support patient autonomy.

NCP Guidelines, 4th edition

The goal of the 4th edition of the National Consensus Project’s Clinical

Practice Guidelines for Quality Palliative Care (NCP Guidelines) is to

improve access to quality palliative care for all people with serious illness

regardless of setting, diagnosis, prognosis, or age. The NCP Guidelines are

intended to encourage and guide health care organizations and clinicians

(including non-palliative care specialists) across the care continuum to

integrate palliative care principles and best practices into their routine

assessment and care of all seriously ill patients. Also, the NCP Guidelines

formalize and delineate available evidence-based processes and practices

as well as consensus recommendations for the provision of safe and

reliable high-quality palliative care for adults, children, and families with

serious illness in all care settings.

Specifically, the purpose of the NCP Guidelines, 4th edition, is to promote

access to quality palliative care, foster consistent standards and criteria, and

encourage continuity of palliative care across settings. Because there is

shared responsibility for delivery and quality of palliative care across health

care settings and over time, the emphasis is on collaborative partnerships

within and between all care providers to ensure access, quality, and

continuity of palliative care.

The NCP Guidelines set expectations for excellence among clinicians

treating patients with serious illness, rather than basic competence levels

for professionals, teams, and organizations.

A systematic review of the evidence for the NCP Guidelines, 4th

edition, was conducted by the RAND Evidence-based Practice

Center. The complete findings are published online in the Journal

of Pain and Symptom Management (doi:

10.1016/j.jpainsymman.2018.09.008).

Audience

This revision addresses best practices for both palliative care specialists, as

well as all clinicians who care for people with serious illness. The

expectation is that other clinicians caring for seriously ill patients will

integrate palliative care competencies (such as safe and effective pain and

symptom management, and expert communication skills) in their practice

and palliative care specialists will provide expertise for those with the most

complex needs.

The audience for the 4th edition of the NCP Guidelines includes specialty

hospice and palliative care practitioners and teams, as well as health

systems, primary care and specialist physician practices, cancer centers,

dialysis units, long-term care facilities, assisted living facilities, Veterans

Health Administration providers, home health and hospice agencies,

prisons, and other care providers. The NCP Guidelines are also applicable

to social service agencies, homeless shelters, and any other community

organizations serving seriously ill individuals.

Most importantly, the goal of the NCP Guidelines is to improve the care

that patients and families receive by defining and supporting access to high-

quality palliative care in all care settings. All practitioners are encouraged

to use the NCP Guidelines to strengthen knowledge and skills to better meet

the needs of people living with serious illness. It is our hope that the care

children and adults with serious illness, and their families, receive will meet

or exceed the criteria in these guidelines.

Settings of Care

Since palliative care is not setting-specific, palliative care principles and

practices are applicable throughout the course of a serious illness. Palliative

care is available across and between care settings, thereby improving

continuity and coordination of care and, as a consequence, decreasing

expenses related to duplicative or non-beneficial interventions or waste.

While hospital-based palliative care and hospice are widely available in the

United States, access to palliative care in other settings is often unavailable.

Reliable access to palliative care in community-based settings is essential to

the delivery of expert care and symptom management, as well as

psychological, practical, and social support, helping patients and families

remain safely in their care setting of choice.

New community-based palliative care models are meeting the needs of

those with a serious illness who are neither hospitalized nor hospice-

eligible, through provision of care in patient homes, physician

offices/clinics, cancer centers, dialysis units, assisted and long-term care

facilities, and other community settings. Community-based palliative care

services are delivered by clinicians in primary care and specialty care

practices (such as oncologists), as well as home-based medical practices,

private companies, home health agencies, hospices, and health systems.

Introduction to the 4th edition

In January 2017, the Gordon and Betty Moore Foundation awarded a two-

year grant to enable the National Coalition for Hospice and Palliative Care

to convene a Stakeholder Summit and develop, disseminate, and implement

the 4th edition of the National Consensus Project’s Clinical Practice

Guidelines for Quality Palliative Care (NCP Guidelines).

For a comprehensive overview of the Stakeholder Summit, read the

National Consensus Project Stakeholder Strategic Directions

Summit report available at

https://www.nationalcoalitionhpc.org/ncp.

This edition of the NCP Guidelines expands upon the content in the 3rd

edition, specifically focusing on two key concepts:

• Palliative care is inclusive of all people with serious illness,

regardless of setting, diagnosis, prognosis, or age. As a result,

language specific to the care of neonates, children, and adolescents

was emphasized throughout the NCP Guidelines.

• Timely consideration of palliative care is the responsibility of

clinicians and disciplines caring for the seriously ill, including

primary care practices, specialist care practices (eg, oncology or

neurology), hospitalists, nursing home staff, and palliative care

specialist teams such as hospice, hospital and community-based

palliative care teams.

In addition, key themes were added to each domain:

• The elements of a comprehensive assessment are described

• Family caregiver assessment, support, and education are referenced

in numerous domains

• The essential role of care coordination, especially during care

transitions, is emphasized

• Culturally inclusive care is referenced in all the domains and

expanded in the Cultural Aspects of Care domain

• Communication (within the palliative care team, with patients and

families, with other clinicians, and with community resource

providers) is a prerequisite for delivery of quality care for the

seriously ill and is emphasized throughout

Other changes to the NCP Guidelines, 4th edition, include:

• An emphasis on community-based resources and community-based

providers

• More attention to anticipatory, as well as post-death, grief and

bereavement

• Emphasis on continuity of palliative care during ongoing care of

patients regardless of whether they are followed by a specialist level

palliative care team

• Reference to key research evidence (based on the findings from the

systematic review)

To increase the usability of the document, each guideline is named for easy

reference, all criteria are numbered, and the domains are reorganized to

follow a temporal format. Domains 2-5 include the following guideline

categories:

• Global – identifying overarching criteria, such as the composition of

the interdisciplinary team

• Screening and Assessment – essential elements of screening and

assessment

• Treatment – key considerations in palliative care treatment strategies

• Ongoing Care – responsibilities of providers to monitor and ensure

access to patients and families over time

The following elements were added to each domain:

• Introduction – context for the domain

• Operational Implications – infrastructure elements needed to

deliver quality care

• Essential Palliative Care Skills Needed by All Clinicians –

palliative care principles, knowledge and skills that all clinicians can

apply in caring for the seriously ill

• Practice Examples – how clinical teams can integrate the NCP

Guidelines in diverse settings and patient populations

• Glossary – definitions of terms used in this document (see Appendix

• Tools / Resources – additional resources specific to each domain (see

Appendix II)

Summary of Key Revisions in Each Domain

Domain 1: Structure and Processes of Care

Coordination of care is emphasized as an important element of care,

especially when patients receive community-based palliative care. New

content regarding the need for ongoing sustainability is included.

Domain 2: Physical Aspects of Care

Recognizing advances in the field, the NCP Guidelines highlight the

importance of validated tools to assess and manage pain and other

symptoms. The impact of functional status on quality of life is emphasized

in the revised NCP Guidelines.

Domain 3: Psychological and Psychiatric Aspects

Domain 3 clarifies and strengthens the responsibilities of the social worker

and all palliative care clinicians regarding the mental health assessment and

treatment in all care settings, either directly, in consultation, or through

referral to specialist level psychological and/or psychiatric care. Since

community-based clinicians may not have adequate access to specialist

level psychological and/or psychiatric care, the teams’ responsibilities to

patients and families is highlighted. Grief and bereavement are described

separately to reflect the distinction between the two concepts; bereavement

is now in Domain 7, which focuses on care nearing the end of life.

Domain 4: Social Aspects of Care

Domain 4 describes an assessment of social supports, relationships,

practical resources, and safety and appropriateness of the care environment.

Domain 5: Spiritual, Religious, and Existential Aspects of Care

This domain outlines the responsibility of all clinicians serving the

seriously ill to assess and respond to spiritual care needs, emphasizing the

need for training for spiritual care providers to care for patients and

families. Flexible approaches to ensuring adequate spiritual support of

patients and families are described.

Domain 6: Cultural Aspects of Care

Specific elements of a cultural assessment are outlined in Domain 6. The

influence of culture within families is delineated, with specific attention to

the role of the child or adolescent in treatment decisions. The conscious

practice of cultural humility is emphasized.

Domain 7: Care of the Patient Nearing the End of Life

The title of this domain was changed from “Care of the Patient at the End of

Life” to reflect the importance of attending to the changing needs of

patients and families in the final days and weeks of life. The guideline on

bereavement is expanded, emphasizing the responsibility of all clinicians

caring for the seriously ill to ensure bereavement services are offered, even

when hospice is not involved in the patient’s care.

Domain 8: Ethical and Legal Aspects of Care

Ethical principles are described and integrated into Domain 8 and a clear

distinction is made that in all cases the surrogates are obligated to represent

the patient’s preferences, not the surrogates’ preferences.

Systematic Review of Key Research Evidence

A systematic review was conducted, synthesizing evidence for each

domain. The review included evidence published as of April 2018, was

guided by 10 key questions, and was supported by a panel of technical

experts. The review identified areas of strength in the literature, as well as

many gaps, to support the NCP Guidelines domains. As with all clinical

practice guidelines, evidence from research is combined with consensus of

experts in the field to support recommendations for care. The NCP

Guidelines Systematic Review provides direction for a future research

agenda that will continue to build the evidence that palliative care improves

the care of seriously ill patients and family members in all care settings.

The review protocol is publicly available at:

http://www.crd.york.ac.uk/PROSPERO/display_record.php?

ID=CRD42018100065.

The methods, literature flow, evidence tables, critical appraisal, and

summary of findings and quality of evidence assessment are published

online in the Journal of Pain and Symptom Management (doi:

10.1016/j.jpainsymman.2018.09.008).

Key Concepts / Definitions

The following definitions are provided as references when reviewing the

NCP Guidelines. See the Glossary for a complete list of terminology. Note:

Words bolded in red throughout the NCP Guidelines are defined in the

Glossary.

• Caregiver – The term caregiver includes family or friends, or others,

either paid or unpaid.

• Clinician – In the context of the NCP Guidelines, clinician refers to

any health professional providing direct care to seriously ill persons

and their families, whether primary care practitioners, specialist

consultants, or specialist-level palliative care teams. While any

clinician can apply palliative care principles and practices, specialist

palliative care teams are interdisciplinary, and the team members

have certification or specialty-level competency to provide specialist

palliative care.

• Family – In palliative care, family is always defined by the patient

and can include the family of origin (parents, siblings, children),

family of choice (spouse, friends, neighbors), and caregivers.

• Palliative care interdisciplinary team (IDT) – Specialty palliative

care interdisciplinary teams collaborate with other care providers to

coordinate care. Depending on the care needs of each patient and

family, the IDT can expand to include other clinicians and

community service providers.

• Patient – Since some patients have cognitive and/or communication

impairment or incapacity to make some decisions, references to

“patient” in the NCP Guidelines refer to the patient or legal decision-

maker.

• Primary palliative care – “Palliative care that is delivered by health

care professionals who are not palliative care specialists, such as

primary care clinicians; physicians who are disease-oriented

specialists (such as oncologists and cardiologists); and nurses, social

workers, pharmacists, chaplains, and others who care for this

population but are not certified in palliative care.”9

• Spirituality – Spirituality is recognized as a fundamental aspect of

compassionate, patient and family-centered care. It is defined as a

dynamic and intrinsic aspect of humanity through which individuals

seek ultimate meaning, purpose, and transcendence, and experience

relationship to self, family, others, community, society, nature, and

the significant or sacred. Spirituality is expressed through beliefs,

values, traditions, and practices.10 Reference to spiritual care within

the NCP Guidelines also refers to religious and/or existential needs

depending on the context.

Using the NCP Guidelines

The NCP Guidelines delineate palliative care principles that clinicians

should integrate into the care of seriously ill patients and their families.

New, emerging, and established specialist palliative care teams can use the

NCP Guidelines to expand services to new patient populations or care

settings, form new partnerships, and improve the care provided to patients

and families. Primary palliative care providers can integrate the knowledge

and skills within the criteria and in the Essential Palliative Care Skills

Needed by All Clinicians section of each domain.

Read the National Consensus Project Stakeholder Strategic

Directions Summit report for examples of ways that the 3rd edition

of the NCP Guidelines was used by a range of stakeholders.

The NCP Guidelines can be utilized to transform the care of individual

patients and families, as well as populations, design new palliative care

programs, enhance or expand exisiting programs, develop and refine

educational programs, measure the effectiveness of and improve care,

develop payer contracts, shape research, and prepare for health care

accreditation.

Individual professionals, teams, and organizations will benefit from reading

this entire document. While it may be tempting for professionals to focus on

the guideline that aligns most closely with their discipline, each Domain

reflects a team-based approach to palliative care.

Conclusion

This revision of the Clinical Practice Guidelines for Quality Palliative

Care, 3rd edition, was driven by the innovation and the rapid growth of

palliative care as an essential element of high-value care for high-need,

seriously ill populations. The NCP Guidelines are intended to help all

clinicians and care settings improve access to all patients in need of

palliative care, from the point of diagnosis throughout the illness or

eventual death of the patient.

As in other editions, the 4th edition of the NCP Guidelines sets a high bar

for quality for all professionals serving patients of all ages in all care

settings. Those seeking to develop or expand palliative care can integrate

the NCP Guidelines into all aspects of their organization and service design.

Acknowledgments

The National Coalition for Hospice and Palliative Care appreciates the

invaluable support of the 16 national organizations that provided

representatives for the NCP Guidelines Steering Committee and Writing

Workgroup (see list below). The project also received essential input from

subject matter experts who offered their support, experience, and thoughtful

comments throughout the revision process.

Funders

It is with tremendous gratitude that the National Coalition for Hospice and

Palliative Care recognizes the funding support for the NCP Clinical Practice

Guidelines for Quality Palliative Care, 4th edition. This project was funded

by the Gordon and Betty Moore Foundation with additional support for

the systematic review by the:

• Gordon and Betty Moore Foundation

• Gary and Mary West Foundation

• The John A. Hartford Foundation

• Stupski Foundation

Co-Chairs

We thank Dr. Betty Ferrell and Dr. Martha Twaddle for their leadership as

co-chairs of the National Consensus Project Steering Committee and the co-

chairs of the Writing Workgroup, Stacie Sinclair and Dr. Tracy Schroepfer

for guiding the writing process. We also thank every member of the

Steering Committee and the Writing Workgroup for their invaluable

contributions to this work.

Writer/Editor

Kathy Brandt, MS

Steering Committee

Martha L. Twaddle, MD, FACP, FAAHPM, HMDC, Co-Chair

American Academy of Hospice and Palliative Medicine

Betty Ferrell, PhD, MA, FAAN, FPCN, Co-Chair

Hospice and Palliative Nurses Association

Mindy J. Fain, MD

American Academy of Home Care Medicine

Dianne H. Timmering, MBA, MFA, CNA

American Health Care Association

Elizabeth Ciemins, PhD, MPH, MA

American Medical Group Association

Margie Atkinson, DMin, BCC

Association of Professional Chaplains

Diane E. Meier, MD, FACP, FAAHPM

Center to Advance Palliative Care

Rev. George Handzo, BCC, CSBB

HealthCare Chaplaincy Network

G Lawrence Atkins, PhD

Long-Term Quality Alliance

Andrea Devoti, MSN, MBA, RN

National Association for Home Care and Hospice

John Mastrojohn III, MSN, MBA, RN

National Hospice and Palliative Care Organization

Nathan Goldstein, MD

National Palliative Care Research Center

Sarah Friebert, MD, FAAP, FAAHPM

National Pediatric Hospice and Palliative Care Collaborative

Karen Johnson, MS

National Quality Forum

Judy Knudson, MPAS, PA-C, BSN

Physician Assistants in Hospice and Palliative Medicine

Tracy A. Schroepfer, PhD, MSW

Social Work Hospice & Palliative Care Network

Kimberly S. Johnson, MD, MHS

Subject Matter Expert: Diversity/Geriatrics

Lee Ellington, PhD

Subject Matter Expert: Patient/Family/Provider Communication

Writing Workgroup

Stacie Sinclair, MPP, LBSW, Co-Chair

Center to Advance Palliative Care

Tracy Schroepfer, PhD, MSW, Co-Chair

Social Work Hospice & Palliative Care Network

Joe Rotella, MD, MBA, HMDC, FAAHPM

American Academy of Hospice and Palliative Medicine

Elizabeth McCormick, MD

American Academy of Home Care Medicine

Gail Sheridan, RN

American Health Care Association

David Introcaso, PhD

American Medical Group Association

Margie Atkinson, DMin, BCC

Association of Professional Chaplains

Rev. Susan K. Wintz, MDiv, BCC

HealthCare Chaplaincy Network

Denise Stahl, MSN, ACHPN, FPCN

Hospice and Palliative Nurses Association

G Lawrence Atkins, PhD

Long-Term Quality Alliance

John McIlvaine

National Association for Home Care and Hospice

Judi Lund Person, MPH, CHC

National Hospice and Palliative Care Organization

Nathan Goldstein, MD

National Palliative Care Research Center

Kathie Kobler, PhD, APRN, PCNS-BC, CHPPN, FPCN

National Pediatric Hospice and Palliative Care Collaborative

Karen Johnson, MS

National Quality Forum

Rich Lamkin, MPH, MPAS, PA-C

Physician Assistants in Hospice and Palliative Medicine

Conflicts of Interest

All members of the Steering Committee and Writing Workgroup completed

disclosure forms, which requires disclosure of financial and other interests,

including relationships with commercial entities that are reasonably likely

to experience direct regulatory or commercial impact as a result of

promulgation of the guidelines. Categories for disclosure include

employment; leadership; stock or other ownership; honoraria; consulting or

advisory role; speaker’s bureau; research funding; patents, royalties, other

intellectual property; expert testimony; travel, accommodations, expenses;

and other relationships. The members of the Writing Workgroup and

Steering Committee did not disclose any relationships constituting a

conflict of interest.

National Coalition for Hospice and Palliative

Care

American Academy of Hospice and

Palliative Medicine

www.aahpm.org

Association of Professional Chaplains www.professionalchaplains.org
Center to Advance Palliative Care www.capc.org
HealthCare Chaplaincy Network www.healthcarechaplaincy.org
National Palliative Care Research
Center
www.npcrc.org
Hospice and Palliative Nurses
Association
www.hpna.org
National Hospice and Palliative Care
Organization
www.nhpco.org
Physician Assistants in Hospice and
Palliative Medicine
www.pahpm.org
Society of Palliative Care Pharmacists www.palliativepharmacist.org
Social Work Hospice and Palliative
Care Network
www.swhpn.org
NCP Staff and Consultants
Amy Melnick, MPA
Executive Director, National Coalition for Hospice and Palliative Care
Gwynn B. Sullivan, MSN
Project Director, National Consensus Project
Cozzie M. King
Manager, National Consensus Project
Vivian J. Miller, LMSW

Research Assistant, National Consensus Project

Systematic Review

The systematic literature review was conducted by the Evidence-based

Practice Center (EPC) located at RAND (Research team: Ahluwalia S,

Chen C, Raaen L, Motala A, Walling A, Chamberlin M, O’Hanlon C,

Cohen C, Larkin J, & Hempel S.)

The technical expert panel (TEP) supporting the systematic review were:

• Betty Ferrell, PhD, MA, FAAN, FPCN (Co-Chair, NCP Steering

Committee)

• Nathan Goldstein, MD (Member, NCP Steering Committee and

Writing Workgroup)

• Tammy Kang, MD (Chair, National Pediatric Hospice and Palliative

Care Collaborative)

• Amy Kelley, MD, MSHS (Co-Director, Serious Illness Quality

Alignment Hub)

• Diane Meier, MD, FACP, FAAHPM (President, National Coalition

for Hospice and Palliative Care)

• Tracy Schroepfer, PhD, MSW, MA (Co-Chair, NCP Writing

Workgroup)

The National Coalition for Hospice and Palliative Care would like to thank

the Journal of Pain and Symptom Management for co-publishing the

findings of the systematic review and providing open access to the article

(doi: 10.1016/j.jpainsymman.2018.09.008).

Endnotes

1 Kelley AS, Bollens-Lund, E. Identifying the population with serious

illness: the “denominator” challenge. J Palliat Med. Volume: 21 Issue

S2: March 1, 2018.

2 Smith A, McCarthy E, Weber E, et al. Half of Older Americans Seen in

Emergency Department in Last Month of Life; Most Admitted to

Hospital, and Many Die There. Health Aff (Project Hope).

2012;31(6):1277-1285. doi:10.1377/hlthaff.2011.0922.

3 IOM (Institute of Medicine). Dying in America: Improving Quality and

Honoring Individual Preferences Near the End of Life. Washington,

DC: The National Academies Press.

https://www.nap.edu/catalog/18748/dying-in-america-improving-

quality-and-honoring-individual-preferences-near. Published 2015.

Accessed January 31, 2018.

4 IOM (Institute of Medicine). Dying in America: Improving Quality and

Honoring Individual Preferences Near the End of Life. Washington,

DC: The National Academies Press.

https://www.nap.edu/catalog/18748/dying-in-america-improving-

quality-and-honoring-individual-preferences-near. Published 2015.

Accessed January 31, 2018.

5 Centers for Medicare and Medicaid Services, Department of Health and

Human Services. Hospice care. Code of Federal Register. 79 FR 50509,

August 22, 2014. https://www.ecfr.gov/cgi-bin/text-idx?

SID=95c732ed603d39aed3682d6371ca27ea&mc=true&node=se42.3.41

8_13&rgn=div8. Accessed April 25, 2018.

6 Center to Advance Palliative Care. Get palliative care.

https://getpalliativecare.org/. Accessed April 26, 2018.

7 National Hospice and Palliative Care Organization. Facts and Figures:

Hospice Care in America.

https://www.nhpco.org/sites/default/files/public/Statistics_Research/201

7_Facts_Figures.pdf Published March 2018. Accessed March 30, 2018.

8 National Hospice and Palliative Care Organization. Facts and Figures:

Hospice Care in America.

https://www.nhpco.org/sites/default/files/public/Statistics_Research/201

7_Facts_Figures.pdf Published March 2018. Accessed March 30, 2018.

9 IOM (Institute of Medicine). Dying in America: Improving Quality and

Honoring Individual Preferences Near the End of Life. Washington,

DC: The National Academies Press.

https://www.nap.edu/read/18748/chapter/1#ii Published 2015. Accessed

January 31, 2018.

10 Puchalski CM, Ferrell B. Making health care whole: integrating

spirituality into patient care. West Conshohocken, PA: Templeton Press;

2010.

Domain 1: Structure and Processes of

Care

Palliative care principles and practices can be integrated into any health

care setting, delivered by all clinicians and supported by palliative care

specialists who are part of an interdisciplinary team (IDT) with the

professional qualifications, education, training, and support needed to

deliver optimal patient- and family-centered care. Palliative care begins

with a comprehensive assessment and emphasizes patient and family

engagement, communication, care coordination, and continuity of care

across health care settings.

Guideline 1.1 Interdisciplinary Team

Since palliative care is holistic in nature, it is provided by a team of

physicians, advanced practice registered nurses, physician assistants,

nurses, social workers, chaplains, and others based on need. The palliative

care team works with other clinicians and community service providers

supporting continuity of care throughout the illness trajectory and across all

settings, especially during transitions of care. Depending on care setting and

patient population, IDT members may be certified palliative care

specialists in their discipline and/or have additional training in palliative

care. Primary care and other clinicians work with interdisciplinary

colleagues to integrate palliative care into routine practice.

Criteria:

1.1.1 The IDT provides care focused on individual physical,

functional, psychological, social, spiritual, and cultural needs.

1.1.2 The IDT encourages all team members to maximize their

professional skills for the benefit of patients and families.

Note: Words bolded in red are defined in the Glossary.

a. Physicians focus on the illness trajectory, prognosis, and medical

treatments, making patient visits or providing supervision in

collaboration with advanced practice registered nurses or physician

assistants (see Domain 2: Physical Aspects of Care).

b. Nurses provide direct patient care, serving as patient advocate, care

coordinator, and educator. Nurses are at the center of the immediate

assessment and reassessment of patient needs (see Domain 2:

Physical Aspects of Care).

c. Advanced practice providers (physician assistants and advanced

practice registered nurses) expand the capacity to deliver complex

care and provide direct care (see Domain 2: Physical Aspects of

Care).

d. Social workers attend to family dynamics, assess and support coping

mechanisms and social determinants of health, identify and facilitate

access to resources, and mediate conflicts (see Domain 3:

Psychological and Psychiatric Aspects of Care and Domain 4: Social

Aspects of Care).

e. Chaplains, as the spiritual care specialists, assess and address spiritual

issues and help to facilitate continuity with the patient’s faith

community as requested (see Domain 5: Spiritual, Religious, and

Existential Aspects of Care).

f. Clinical pharmacists optimize medication management through a

thorough review of the patient’s medications to identify therapies to

further palliate symptoms, resolve or prevent potential drug-related

toxicities, and recommend dose adjustment and deprescribing where

appropriate.

1.1.3 The IDT may also include other professionals with credentials,

experience, and skills to meet the needs of the patient and

family, including: mental health professionals, child life

specialists, nursing assistants, nutritionists, respiratory

therapists, occupational therapists, physical therapists, speech

and language pathologists, massage, art, and music therapists,

community health workers, paramedics, emergency medical

technicians, psychologists, psychiatric-mental health advanced

practice registered nurses, case managers, traditional medicine

practitioners, and volunteers.

1.1.4 The IDT facilitates the implementation and ongoing refinement

of the palliative care plan in communication with all care

providers to support patient and family goals.

1.1.5 The IDT provides developmentally appropriate and culturally

sensitive care to patients and families.

1.1.6 The team meets regularly to discuss patient care, IDT

functioning, and operational details essential to the provision of

quality palliative care. The frequency of IDT meetings is based

on the needs of the population served, the care setting(s), and

service model.

1.1.7 The patient and family have access to palliative care staff 24

hours a day, seven days a week by phone or telehealth

applications.

1.1.8 The IDT accesses and ensures continuity with community

services for families caring for neonates, children, or adults with

a serious illness.

1.1.9 Policies and procedures are in place for prioritizing and

promptly responding to referrals and ongoing patient and family

care needs.

1.1.10 For programs with volunteers, policies and procedures are in

place to guide volunteer services including recruitment,

screening, training, role clarification, support, supervision, and

performance evaluation.

1.1.11 A palliative care specialty team includes a certified palliative

care specialist. The setting of care or reimbursement may further

dictate which clinician must be certified.

Guideline 1.2 Comprehensive Palliative

Care Assessment

An interdisciplinary comprehensive assessment of the patient and family

forms the basis for the development of an individualized patient and family

palliative care plan.

Criteria:

1.2.1 An initial comprehensive assessment is completed as soon after

the referral as is reasonably possible.

1.2.2 Each member of the IDT contributes to a comprehensive

assessment as soon as reasonably possible, depending on the

urgency of patient needs.

1.2.3 The initial assessment includes conversations with the patient,

family caregivers, clinicians, and others according to the

patient’s preferences.

1.2.4 The initial assessment is conducted in person by one or more

IDT members, depending on the needs and concerns of the

patient, is documented, and includes:

a. Patient and family understanding of the serious illness, goals of care,

treatment preferences, and a review of signed advance directives, if

available

b. A determination of decision-making capacity or identification of the

person with legal decision-making authority

c. A physical examination including identification of current symptoms

and functional status

d. A thorough review of medical records and relevant laboratory and

diagnostic test results

e. A review of the medical history, therapies, recommended treatments,

and prognosis

f. The identification of comorbid medical, cognitive, and psychiatric

disorders

g. A medication reconciliation, including over-the-counter medications

h. Social determinants of health, including financial vulnerability,

housing, nutrition, and safety

i. Social and cultural factors and caregiving support, including

caregiver willingness and capacity to meet patient needs

j. Patient and family emotional and spiritual concerns, including

previous exposure to trauma

k. The ability of the patient, family, and care providers to communicate

with one another effectively, including considerations of language,

literacy, hearing, and cultural norms

l. Patient and family needs related to anticipatory grief, loss, and

bereavement, including assessment of family risk for prolonged grief

disorder

1.2.5 The team identifies and documents if the adult patient or a

family member served in the military and whether the patient or

family member may be eligible for VA benefits.

1.2.6 For pediatric patients, the team ascertains the developmental

status and children or teens’ understanding of their disease, as

well as parental preferences for their child’s care at the time of

initial consultation. This is revisited throughout the trajectory of

care.

1.2.7 The IDT performs subsequent assessments at regularly defined

intervals and whenever the patient’s status significantly changes,

new problems are identified, or the patient experiences a

transition in health care setting or provider.

Guideline 1.3 Palliative Care Plan

In collaboration with the patient and family, the IDT develops, implements,

and updates the care plan to anticipate, prevent, and treat physical,

psychological, social, and spiritual needs.

Criteria:

1.3.1 The patient’s preferences, needs, values, expectations, and

goals, as well as the family’s concerns, provide the foundation

and framework for the plan of care.

1.3.2 The IDT collaboratively discusses and documents patient status,

patient and family needs, treatment options, and symptom

management.

1.3.3 The IDT develops, implements, and coordinates the care plan in

collaboration with the patient and family, other clinicians, and

community providers, when indicated and possible.

1.3.4 The care plan is always accessible to the patient, IDT, and other

involved clinicians and, with the patient’s consent, is shared

with family, caregivers, and community providers.

1.3.5 The care plan is updated and reviewed at regular intervals and

when the patient experiences a significant change in status;

changes are based on the evolving needs of the patient and

family, with recognition of complex, competing, and shifting

priorities in goals of care.

1.3.6 When appropriate, the patient is referred to hospice.

1.3.7 The IDT facilitates the implementation of the plan of care to

ensure:

a. The patient and family have access to medications and treatments

b. New medications, medical equipment, tests, and therapies are

authorized by payers

c. The patient and family can safely and effectively manage and

administer medications

1.3.8 The IDT provides patient and family with anticipatory guidance

regarding disease progression and management strategies to

maximize quality of life for both the patient and family.

1.3.9 Treatment and care setting alternatives are documented and

communicated to the patient and family to promote informed

shared decision-making.

1.3.10 Treatment recommendations are based on goals of care,

assessment of risk and benefit, and best evidence. Re-evaluation

of treatment efficacy, patient-family goals, and choices are

documented.

1.3.11 The IDT makes referrals and assists in the integration of the

additional providers to support the plan of care.

1.3.12 When serving as consultants, palliative care specialists

contribute to the care plan developed by the referring provider

and overtly clarify their ongoing role in care.

1.3.13 When working with patients with cognitive and/or

communication impairment or incapacity, the IDT:

a. Identifies the availability and willingness of a surrogate decision-

maker

b. Supports the surrogate with education related to signs and symptoms

of psychological and psychiatric distress, and techniques to help

alleviate distress

c. Supports health care decision-making in a manner that is patient-

focused and goal-concordant using principles of substituted judgment

and best interest

Guideline 1.4 Continuity of Palliative Care

The IDT has defined processes to ensure access, quality, and continuity of

care, especially during transitions of care.

Criteria:

1.4.1 The IDT has defined processes for identifying patients with

palliative care needs specific to the population(s) served.

1.4.2 Patients and families receive an explanation of the palliative

care services and, depending upon the setting of care, a written

consent for services is signed by the patient and/or health care

surrogate.

1.4.3 When specialist palliative care is discontinued:

a. The IDT documents their assessment and recommendations for

ongoing care and shares them with the patient and family, as well as

involved clinicians

b. If a patient and family transitions to a care setting where palliative

care is unavailable, the IDT reviews the ongoing care plan with the

patient and family, as well as the clinicians who will continue or

assume care oversight

1.4.4 Upon the death of the patient, the IDT provides grief support to

the family and ensures access to long-term bereavement

support for family members (see Domain 7: Care of the Patient

Nearing the End of Life).

1.4.5 The IDT ensures that care providers are informed of the

patient’s death and plans for bereavement support, as indicated.

Guideline 1.5 Care Settings

Palliative care is provided in any care setting, including private residences,

assisted living facilities, rehabilitation, skilled and intermediate care

facilities, acute and long-term care hospitals, clinics, hospice residences,

correctional facilities, and homeless shelters.

Criteria:

1.5.1 Care is provided in the setting preferred by the patient and

family, if feasible, or the IDT helps the patient and family select

an alternative setting.

1.5.2 The IDT consults and collaborates with the clinicians and other

professionals involved in patient care to maximize the patient’s

safety and sense of control.

1.5.3 Providers in all settings address the unique needs of children,

whether they are patients, family members, or visitors.

1.5.4 Palliative care facilitates visits with family, friends, and pets in

accordance with patient and family preferences and policies

within the care setting.

1.5.5 The IDT shares information and resources regarding palliative

care with clinicians and other professionals involved in the

patient’s plan of care.

Guideline 1.6 Interdisciplinary Team

Education

Education, training, and professional development are available to the IDT.

Criteria:

1.6.1 All members of the IDT have appropriate levels of education,

including training in palliative care.

a. Advanced practice registered nurses, physicians, physician assistants,

pharmacists, and physical, occupational or speech therapists have

relevant graduate degrees and are licensed in their respective

disciplines.

b. Nurses have appropriate educational preparation to their license and

scope of practice.

c. Social workers have relevant bachelor’s and/or graduate degrees and

meet state licensing requirements.

d. Spiritual care providers have relevant master’s degrees and are ideally

board certified as a professional chaplain.

e. Nursing assistants and personal care attendants meet state licensing

requirements.

f. Volunteers, when utilized, must have training relevant to their role.

1.6.2 The IDT encourages discipline-specific credentialing and

certification, or other recognition of competence including

specialized training.

1.6.3 Education, resources, and support are available to enhance IDT

communication and collaboration.

1.6.4 Palliative care staff participate in initial orientation and

continuing education focused on the NCP Guidelines and

document their participation accordingly.

1.6.5 All palliative care clinicians receive training regarding the use

of opioids, including:

a. Safe and appropriate use of opioids

b. Risk assessment for opioid substance use disorder

c. Monitoring for signs of opioid abuse and diversion

d. Managing pain for patients at risk for substance abuse

e. Safe disposal of opioids in home and community settings

Guideline 1.7 Coordination of Care and

Care Transitions

Care is coordinated and characterized as the right care at the right time

throughout the course of an individual’s disease(s) or condition. The IDT

recognizes that transitions of care occur within care settings, between care

settings, and between care providers. Care transitions are anticipated,

planned, and coordinated to ensure patient goals are achieved.

Criteria:

1.7.1 IDT members understand how to effectively facilitate

communication, care coordination, and transitions of care,

sharing information including procedures that safeguard patient

and family privacy.

1.7.2 The IDT establishes policies for optimal communication,

including the sharing of documentation with everyone involved

in the plan of care.

1.7.3 Before, during, and after transitions of care, the IDT coordinates

with the patient and family and other providers to ensure

continuity of care.

1.7.4 A timely assessment is completed after each care transition.

Guideline 1.8 Emotional Support to the

Interdisciplinary Team

Providing palliative care to patients with a serious illness and their families

has an emotional impact, therefore the IDT creates an environment of

resilience, self-care, and mutual support.

Criteria:

1.8.1 The program assesses staff for distress and grief.

1.8.2 Administrative staff, IDT, and volunteers receive emotional

support provided free from blame or stigma to alleviate the

stress of caring for patients and families.

1.8.3 The IDT implements interventions to promote staff support and

sustainability, such as opportunities to discuss the impact of

providing palliative care.

1.8.4 Workload and workflow are structured to foster professional

engagement and maximize time spent on activities that improve

patient and family outcomes and staff wellness.

Guideline 1.9 Continuous Quality

Improvement

In its commitment to continuous quality improvement (CQI), the IDT

develops, implements, and maintains a data-driven process focused on

patient- and family-centered outcomes using established quality

improvement methodologies.

Criteria:

1.9.1 The program measures and improves quality by systematically

collecting and analyzing data on care processes and outcomes

specific to the patient population and organization’s capacity,

setting improvement targets, and planning and implementing

change. This cycle is repeated in an iterative and ongoing

fashion until it achieves sustained improvement.

1.9.2 The IDT considers the six domains of health care quality as

defined in 2001 by the Institute of Medicine (safe, effective,

patient-centered, timely, efficient and equitable)1 in the design of

its CQI program.

1.9.3 The IDT identifies care coordination measures and integrates

these into CQI initiatives.

1.9.4 To the extent possible, the IDT uses assessment instruments,

quality measures, and experience of care surveys that are

validated, clinically relevant, and cross-cutting across settings or

populations.

1.9.5 Patients, families, clinicians, and other partners participate in

the evaluation of the IDT.

1.9.6 The IDT participates in quality reporting and accountability

programs, as required or necessary to maintain licensure or

accreditation.

Guideline 1.10 Stability, Sustainability, and

Growth

Recognizing limitations in reimbursement for interdisciplinary palliative

care, the IDT endeavors to secure funding for long-term sustainability and

growth.

Criteria:

1.10.1 A community needs assessment is conducted to identify

populations in need of palliative care, determine if demand and

resources are sufficient to support a sustainable palliative care

program model, design services specific to the target

population(s), and identify partners.

1.10.2 Based on the needs assessment, a business plan with anticipated

revenue and expenses is developed to ensure continuity of

service to patients and families.

1.10.3 When launching a new program, key performance metrics are

agreed on in advance to define when a program is meeting its

goals.

1.10.4 The IDT develops strategic plans to prepare for changes in the

target population and market forces, as well as other

opportunities or threats that may affect the sustainability and

growth of the program.

Clinical and Operational Implications

Clinical Implications

Across patient populations and care settings from diagnosis to end of life,

palliative care is shown to prevent and relieve suffering and optimize

quality of life for patients and families. Its foundation is a well-trained and

well-supported IDT that performs comprehensive assessments and develops

and implements palliative care plans in coordination with the patient,

family, and other health care and community providers. Palliative care is

delivered in a safe environment with respect for patient and family values,

culture, preferences, and goals.

Operational Implications

The IDT provides consistent patient- and family-centered services,

collaborates with partner organizations to facilitate care coordination,

fosters a positive organizational culture, strives for continuous quality

improvement and financial sustainability, and grows to address the needs of

the populations it serves.

Essential Palliative Care Skills Needed by

All Clinicians

Clinicians and staff working in all care settings benefit from an

understanding of the value of palliative care, as well as an overview of

palliative care principles and practices. Clinicians caring for the seriously ill

have sufficient training and experience to complete palliative assessments

and address common sources of suffering. The palliative assessment

addresses the essential elements of the domains of palliative care yet may

not be as in-depth as the assessment a palliative care team would provide.

Key Research Evidence

The systematic review addressed two key questions: KQ1a) What is the

effect of interdisciplinary team care on patient and family/caregiver

outcomes; and KQ1b) What is the impact of palliative care interventions to

improve continuity and coordination of care on patient and family/caregiver

outcomes? Thirteen systematic reviews were identified pertaining to KQ1a

and 18 pertaining to KQ1b. The evidence tables in the systematic review

describe the key findings of each included review. The summary of findings

table summarizes the research evidence across identified reviews and

describes the quality of evidence. The complete findings are published

online in the Journal of Pain and Symptom Management (doi:

10.1016/j.jpainsymman.2018.09.008).

Practice Examples

Practice Example D1-A

A Federally Qualified Health Center recognizes that its aging population

will benefit from the integration of palliative care into its care model. The

leadership of the organization accesses training in palliative care for the

nurse care navigators and two express interest in pursuing advanced

certification in hospice and palliative care to serve as “champions” within

the health center. The navigators traditionally assist patients with

coordinating services and ensuring appointments with specialty providers,

as well as primary care follow-up. Each navigator is the primary contact

and liaison between patient and providers, thus ensuring that the patients’

needs are met. With enhanced palliative care skills, navigators learn to

screen for unmet needs in all the domains of care in the NCP Guidelines

and then facilitate assessments and access to support as indicated. The

navigators serve as contacts for hospital-based palliative care programs to

enhance coordination of care post-discharge. They also have relationships

with community home health and hospice programs to facilitate referrals

and care coordination to traditional home health and hospice services, as

well as home-based palliative care.

Practice Example D1-B

Staff at a community hospital identify a trend in after hours and weekend

utilization of the emergency department (ED). A significant proportion of

patients they see are seriously ill children with symptom issues following a

hospitalization at the pediatric hospital, which is 30 miles away. The local

hospice has a large home-based pediatric palliative and hospice program,

with just one board-certified hospice and palliative medicine pediatrician.

The hospital’s pediatric service partners with a large community pediatric

practice and the hospice pediatric physician, to implement a collaborative

quality improvement initiative. Outcomes include staff education for

hospital ED personnel, the development of decision-support tools for

symptom management, processes to clarify after-hours access to specialty

palliative care, and a community resources guide specifically for families

with seriously ill children.

Practice Example D1-C

A small rural hospital with limited resources and no formal palliative care

services has an increasingly aging population. It has a long relationship

with a community hospice partner, providing home-based palliative care,

and two local skilled nursing facilities that provide rehabilitation. These

three entities collaborate to improve post-acute care for their community by

providing staff education, which includes formal training in communication

skills and goals of care discussions for their staff. They evaluate, refine, and

formalize their communication and referral processes between the entities.

This collaboration leads to the formation of a Palliative Care Steering

Committee with representatives from all the entities, including the

hospital’s home health department. Together, they identify and codify all

the community resources available that would benefit their seriously ill

patient population and compile a resource guide. The hospice hires an

advanced practice registered nurse with advanced training in palliative care

and the entities collaborate to form an interdisciplinary team (IDT) for

palliative care which includes: the social worker from the nursing home, the

hospital chaplain, and a hospitalist/emergency department physician. As a

result of this collaboration and regular discussions by the palliative care

IDT, they demonstrate improvement in their net promoter scores (which

indicates the likelihood to recommend the program as a measure of patient

satisfaction with care), increased community volunteerism, and decreased

hospital re-admissions and non-beneficial emergency department visits for

their sickest patients. The hospitalist also becomes a hospice medical

director, furthering collaboration and continuity.

Practice Example D1-D

A large academic medical center has operated an inpatient palliative care

service for 10 years. In the strategic plan, the hospital leadership commits to

the integration and growth of palliative care into the ambulatory specialty

clinics, as well as home-based services. Phase one implementation includes

embedding palliative care physicians and advanced practice providers into

the oncology clinic several days a week. The cancer center and palliative

care service share the expenses of an outpatient palliative care social

worker. Phase two includes embedding palliative care into the pulmonary

and heart failure clinics, including the integration of palliative advanced

practice registered nurses, clinical nurse specialists, and physician assistants

for both clinic and home-based visits. The inpatient palliative care team

meeting expands to include representatives from home health, physical

therapy, and the community hospice program. The entire team attends the

first part of the meeting, which focuses on inpatients, and a subsection of

the team continues the team meeting to discuss care planning for

outpatients.

Practice Example D1-E

A Department of Veterans Affairs (VA) Healthcare System serves an

increasingly diverse and aging population of patients, many with serious

illness and co-morbid psychological illnesses. The VA Healthcare System

provides care to Veterans who drive hundreds of miles to receive care. The

VA Healthcare System has a strong palliative care service in their hospital

and regional clinics and uses triggers based on routine palliative care

assessments in its electronic medical record to prompt referrals to palliative

care specialty services. The local VA hospital has strong relationships with

hospices and palliative care programs in the communities where Veterans

live so that if a patient wants to receive care at home, the local hospice or

palliative care program can continue the care plan started by the VA,

coordinating care on an ongoing basis.

Practice Example D1-F

A non-profit community hospice develops a palliative care service that is

well received in the community, but struggles to sustain the program

financially. Advanced practice registered nurses providing palliative care

work with their hospice colleagues for interdisciplinary input, but express a

need for greater IDT support and expertise for non-hospice patients.

Internal tensions and role confusion hurt morale. Hospice medical directors

feel they are stretched too thin to oversee both palliative care and hospice

teams. The hospice clinical leadership approaches the hospital-based

palliative care practice regarding a possible collaboration to serve seriously

ill patients. The teams organize a pilot of an advanced practice registered

nurse based post-acute palliative care program for patients with advanced

heart failure in an effort to improve coordination, reduce readmissions, and

increase timely referral to palliative care. The pilot includes education from

the cardiologists on the progression and treatment of advanced heart failure

and communication skills practice for all heart failure and palliative care

team members with specific attention to discussions on use of cardiac

technology (eg, left ventricular assist device, automated implantable

cardioverter defibrillators). The teams create procedures for identifying

eligible patients, referrals, coverage and communication, and choice of

quality metrics for regular review. Monthly team meetings focus on

collaborative care planning and analysis of the metrics of the pilot, which

demonstrate improvement in patient and family satisfaction, confidence in

their care, time spent at home, and earlier hospice utilization for eligible

patients. Hospitalizations, readmissions, and emergency department

utilization decrease by over 50 percent. The hospital agrees to a contract

with hospice to provide post-acute care for heart-failure patients and

initiates a separate pilot for pulmonary disease.

Practice Example D1-G

A free-standing hospice identifies a need to provide community-based

palliative care services. The hospice utilizes the NCP Guidelines to develop

the program structure and processes. One of the hospice medical directors

oversees the program. An advanced practice registered nurse, registered

nurse, social worker, and chaplain utilize the comprehensive assessment to

develop a care plan, which guides patient and family care. The team utilizes

evidence-based tools that promote patient and family self-report and self-

management, including the Edmonton Symptom Assessment System -

revised. The electronic health record includes documentation tools to

support health care team communication, trending of clinical information,

and data extraction for continuous quality improvement. Clinical,

operational, financial, and patient and family experience of care metrics are

reviewed on a monthly, quarterly, and annual basis and shared with the

board members and other stakeholders to promote program integrity and

sustainability. The program demonstrates significant reductions in pain and

dyspnea within 24 to 72 hours of initial consult, almost 100 percent

completion of advance directives, frequent use of Physician Orders for Life

Sustaining Treatment (POLST) medical orders using the Appropriate

POLST Form Use Policy, significant reductions in utilization of the

emergency room and hospitalizations, significant reductions in the total cost

of care, and patient experience score ratings consistently ranked as “very

satisfied.”

Endnotes

1 Crossing the quality chasm a new health system for the 21st century.

(2001). Washington: National Acad. Press.

http://www.nationalacademies.org/hmd/Reports/2001/Crossing-the-

Quality-Chasm-A-New-Health-System-for-the-21st-Century.aspx.

Accessed November 7, 2017.

Domain 2: Physical Aspects of Care

Physical care of seriously ill patients begins with an understanding of the

patient goals in the context of their physical, functional, emotional, and

spiritual well-being. The assessment and care plan focus on relieving

symptoms and improving or maintaining functional status and quality of

life. The management of symptoms encompasses pharmacological, non-

pharmacological, interventional, behavioral, and complementary treatments.

Physical care, acute and chronic symptom management across all care

settings is accomplished through communication, collaboration, and

coordination between all professionals involved in the patients’ care,

including primary and specialty care providers.

Guideline 2.1 Global

The palliative care interdisciplinary team (IDT) endeavors to relieve

suffering and improve quality of life, as defined by the patient and family,

through the safe and timely reduction of the physical symptoms and

functional impairment associated with serious illness.

Criteria:

2.1.1 The goal of symptom management is to improve physical well-

being, functionality, and quality of life to a level acceptable to

the patient, or to the health care surrogate if the patient is unable

to report distress.

2.1.2 The symptoms associated with serious illness and treatments are

anticipated and prevented.

2.1.3 The IDT recognizes that culture can influence the approach to

illness, reporting of symptoms, preferences around treatment

and decision-making process.

2.1.4 Effective symptom management requires attention to the

physical, emotional, spiritual, and cultural factors, as well as the

social determinants of health that contribute to the total pain

and suffering associated with serious illness.

2.1.5 Symptom management requires an IDT, including access to

professionals with specialist-level skill in symptom control for

all types of serious illnesses.

2.1.6 Palliative care clinicians receive training on symptom

management, including:

a. Safe and appropriate use of opioids

b. Risk assessment for opioid substance use disorder

c. Monitoring for signs of opioid abuse and diversion

d. Managing pain for patients at risk for substance abuse

2.1.7 The IDT has training and awareness of applicable policies and

protocols for opioid management.

Note: Words bolded in red are defined in the Glossary.

Guideline 2.2 Screening and Assessment

The IDT assesses physical symptoms and their impact on well-being,

quality of life, and functional status.

Criteria:

2.2.1 Assessments are conducted in the language preferred by the

patient or family, using a professional medical interpreter (see

Domain 6: Cultural Aspects of Care).

2.2.2 Attention is given to assessing the onset, quality, severity,

provoking and relieving factors, response to prior treatment,

level of burden, impact on functionality and quality of life, and

meaning of distressing symptoms, as well as the patient’s goals

of care.

2.2.3 The IDT utilizes validated symptom and functional assessment

tools, treatment policies, standards, and guidelines appropriate

to the care of neonates, children, adolescents, and adults with

serious illnesses.

2.2.4 The IDT conducts and regularly documents ongoing

assessments of pain, other physical symptoms, functional status,

symptom distress, and quality of life. After treatment is

initiated, the IDT performs a timely reassessment to ascertain

the effectiveness of the treatment.

2.2.5 There is attention to symptom assessment in patients with

communication challenges due to delirium, cognitive

impairment, developmental capacity, or mechanical

interference of voice due to intubation, tracheostomy, injury, or

disease processes.

2.2.6 When controlled substances are prescribed, the risk of diversion

and substance use disorder are assessed.

2.2.7 The IDT assesses patient and/or caregiver cognitive and

physical ability to manage medications and meet caregiving

needs.

Guideline 2.3 Treatment

Interdisciplinary care plans to address physical symptoms, maximize

functional status, and enhance quality of life are developed in the context of

the patient’s goals of care, disease, prognosis, functional limitations,

culture, and care setting. An essential component of palliative care is

ongoing management of physical symptoms, anticipating changes in health

status, and monitoring of potential risk factors associated with the disease

and side effects due to treatment regimens.

Criteria:

2.3.1 The IDT encourages and facilitates active involvement of

patients and caregivers in developing the plan of care and

managing physical symptoms. Patients and families are

encouraged and given frequent opportunities to ask questions,

seek support, and communicate changes in status including

worsening symptoms and treatment-associated side effects.

2.3.2 Treatment of distressing symptoms and side effects are

evidence-based and include the spectrum of pharmacological,

interventional, behavioral, and complementary therapies or

interventions. The need for and effectiveness of a bowel

regimen is regularly assessed whenever opioids are prescribed.

2.3.3 The IDT will anticipate the impact of new symptom

interventions on existing treatment regimens (eg, rapid down

titration of opioid following successful surgical pain-relieving

procedure).

2.3.4 The patient’s response to treatments is regularly re-evaluated.

2.3.5 The IDT collaborates with appropriate specialists, including

child life specialists, when meeting the symptom management

needs of neonatal and pediatric patients.

2.3.6 Caregivers are assessed, trained, and supported to provide safe

and appropriate care to the patient, including medication

administration, safe transfers, and use of medical equipment.

2.3.7 When physical symptoms are refractory to standard treatments,

the IDT evaluates the potential benefit of advanced and/or

interventional therapies.

2.3.8 The plan of care incorporates community services and

specialists based on the needs and preferences of the patient and

family (eg, day care, home health, hospice, complementary

therapies, and other services).

2.3.9 When prescribing medications with significant side effects

and/or risk of misuse or abuse, a risk assessment and

management plan consistent with state and federal regulations

are implemented. Patients, families, and all clinicians are

instructed regarding the safe usage of these medications

including safe storage, inventory, and appropriate medication

disposal.

2.3.10 The ongoing care of patients being treated with opioids for

physical symptoms, such as pain and dyspnea, includes

documentation of functional and symptoms goals, ongoing

assessment of the risk of opioid misuse, and reassessment

intervals.

2.3.11 The plan of care for patients with addiction identifies how

symptoms will be managed, in concert with addiction specialists

when needed.

2.3.12 A regular and systematic medication reconciliation,

justification, and optimization is performed to review accuracy

and necessity of medications, screen for drug interactions,

minimize polypharmacy, and reduce any burdens medications

impose on patients and families.

2.3.13 The IDT helps to educate, enable, and empower the patient and

family regarding proper medication administration.

Consideration is given as to whether patients and families can

access and afford the medications, interventions, and services

prescribed or recommended.

2.3.14 When indicated, referral to rehabilitation therapies, including

but not limited to physical, occupational, and speech therapy, is

provided based on patient and caregiver goals and the

anticipated benefit and burden of the intervention.

Guideline 2.4 Ongoing Care

The palliative care team provides written and verbal recommendations for

monitoring and managing physical symptoms.

Criteria:

2.4.1 Processes are in place to ensure:

a. Ongoing monitoring during periods of stability in symptom

management and functional status

b. Referral and care coordination to manage ongoing physical symptoms

and functional impairment

c. The recommendations are documented and communicated to primary

and specialist care providers involved in the patient’s ongoing care

Clinical and Operational Implications

Clinical Implications

In all care settings, palliative care seeks to improve physical comfort and

optimal functional status. Physical concerns, including ongoing access to

medications, can be exacerbated as patients transfer across settings of care.

Services align with the goals, needs, culture, ages, and developmental status

of the patient and family. Expert symptom management focuses not only on

physical factors but also emotional, spiritual, religious, and cultural factors,

which set the foundation of palliative care and promote comfort and quality

of life.

Operational Implications

Clinicians develop and follow policies and protocols related to the

assessment and treatment of physical symptoms, including controlled

substances. Systems are in place to facilitate communication and

coordination of care, especially during care transitions, to ensure the

patient’s plan of care continues to be implemented.

Essential Palliative Care Skills Needed by

All Clinicians

All clinicians need expertise in the assessment of patient symptom burden,

functional status, and quality of life, and in the development of a palliative

treatment plan that is consistent with patient and family needs and

preferences. Clinicians need the skills to identify and treat symptoms

associated with serious illness and related treatments, including pain,

nausea, constipation, dyspnea, fatigue, and agitation.

Palliative care specialists can assist other clinicians as consultants or care

coordinators based on the specific needs of the patient, particularly in

instances of complex and intractable symptoms. Consultations with

specialist-level palliative care can assist when patients have complex pain

and symptom management needs.

Key Research Evidence

The systematic review addressed the following key question: KQ2) What is

the impact of palliative care interventions on physical symptom screening,

assessment, and management of patients? Forty-eight systematic reviews

were identified pertaining to KQ2. The evidence table in the systematic

review describes the key findings of each included review. The summary of

findings table summarizes the research evidence across identified reviews

and describes the quality of evidence. The complete findings are published

online in the Journal of Pain and Symptom Management (doi:

10.1016/j.jpainsymman.2018.09.008).

Practice Examples

Practice Example D2-A

A palliative care service in a large public hospital serves patients from a

broad geographic area. Many patients come from rural communities or are

too frail or functionally impaired to travel easily to the clinic. The palliative

service uses a telehealth application (app) on smartphones with secure

video to stay connected with their patients between face-to-face

appointments. The smartphone app allows the patients and families to

create a record of their symptoms and indicate responses to treatments. The

data entered creates graphs of pain and symptom levels and well-being that

show trends in symptom control. The application has an encrypted camera

so that patients and caregivers can send confidential photos of wounds or

speak with their providers by video. When the home health nurse visits, she

coordinates a video chat with several members of the clinic palliative team

to review symptoms and medications and make necessary changes. Patients

and families can see their team and vice versa, which adds to their

confidence and engagement with their plan of care. The home health nurse

feels empowered in facilitating team-based care and can review her

concerns in real time with the prescribing physician and the families. Tele-

palliative care “brings” clinicians to patients’ homes to assess new or

exacerbated symptoms in a patient-centered, time- and cost-efficient

manner, avoiding unnecessary or burdensome visits to the physician office

or emergency department.

Practice Example D2-B

A cancer center has a growing cancer survivors population and has

developed a survivorship clinic. These individuals often struggle with

ongoing symptoms and the delayed effects of cancer treatments, and some

experience psychological repercussions of surviving a life-threatening

diagnosis and living with uncertainty about recurrence. The palliative care

service does not have capacity to see both new and active cancer treatment

patients, as well as long-term cancer survivors. The cancer survivorship

program decides to collaborate formally with the palliative care service to

integrate principles of palliative care into survivorship care. The clinical

nurse specialist and physician assistants responsible for survivorship care

participate in palliative care education and develop decision-support tools

for managing common concerns, such as persistent fatigue, peripheral

neuropathy, anxiety, and depression. The survivorship and palliative care

programs share the cost of two full-time social workers who work with

psychologists and psychiatrists as needed to expedite care. Patients at high-

risk of recurrence are identified and continue to see the palliative care team

along with their intermittent oncology follow-up.

Practice Example D2-C

A large multi-site, multi-specialty community pediatric practice cares

for children with neurological disease, muscular dystrophy, and cystic

fibrosis. Ongoing review of their quality metrics identifies that parent

satisfaction has been decreasing, particularly related to symptom

management for children who have been hospitalized and are discharged

home. In response, the practice invests in training several advanced practice

providers as “palliative care champions” to support patients with serious

illness and to facilitate care coordination when they are hospitalized. The

practice initiates a palliative care clinic one day per week at rotating sites

attended by a consulting palliative medicine physician to collaborate with

the palliative care champions. The quality improvement plan strengthens

the practice relationships with home care and hospice, with a goal of better

care coordination for their patients.

Practice Example D2-D

A home-based primary care practice with a physician, advanced practice

registered nurse, and medical assistant cares for elderly people with multi-

morbidities and functional impairment. The practice has demonstrated its

value by helping people avoid non-beneficial emergency department visits

and hospital stays. The practice receives some financial support from the

local medical center but still relies heavily on inadequate fee-for-service

reimbursement. The providers can see that many of their patients and

families would benefit from an interdisciplinary approach to care,

especially for the social and spiritual aspects of care, and roughly 40

percent of their patients transition to hospice each year. The practice meets

with the local community hospice, which is working to establish its own

palliative care program. The hospice needs a palliative care medical director

and its advanced practice registered nurses need more training in caring for

people with complex medical illnesses who are not hospice-eligible. The

two entities engage in joint staff education and create processes to identify

which patients need access to the hospice’s social worker. The practice

begins to systematically screen for spiritual distress using the FICA

spiritual history tool and requests consultations from the hospice chaplain

as indicated. The hospice personnel identify themselves as part of the

primary care practice when visiting patients and families. The entities

obtain legal consultation and establish contracts to support their

collaboration, setting forth clear lines of communication and responsibilities

and meeting regularly to review their patient outcomes.

Practice Example D2-E

A community-based home health and hospice agency also offers a

palliative care program. The palliative care program utilizes advanced

practice providers who collaborate with the primary care provider and/or

treating specialists and are supported by commercial insurance and

Medicare Part B reimbursement. Several nurses in the home health program

have advanced certification in hospice and palliative care. All home health

patients are screened for palliative needs by the home health nurse − most

people who screen positive have cancer or chronic progressive illnesses

with recurrent hospitalizations. The home health nurse identifies the patient

and family needs and obtains consents and an order for palliative care

support when indicated. The social workers and chaplains from the hospice

program collaborate actively with the nurses in home health to develop a

coordinated plan of care. The advanced practice registered nurse or

physician assistant engage with these patients simultaneously with home

health, particularly when prescribing authority is needed, to facilitate

continued support for high-risk patients once home health care goals are

reached. Patient/family and provider satisfaction with the program is high.

The hospice sees an increase in appropriate and timely admissions with the

growth of the program. When eligible patients are admitted to hospice care,

they experience greater continuity with team members; this continuity is

identified as a key value-add to the program.

Practice Example D2-F

The clinicians in a health clinic in a state prison have become aware of the

need for palliative care for their aging, seriously ill inmates. The very

burdened prison clinic is affiliated with a university hospital, but prisoners

are often not cared for until days before death in the prison due to limited

security and resources to care for them in the hospital. The prison clinic

staff is aware of some model programs nationally that train inmate

volunteers to provide hospice services, and with bereavement support and

counseling provided by prison psychologists and chaplains. However, their

efforts to date have been limited due to economic and organizational

barriers in the prison system. The prison health clinic staff are committed to

improving palliative care, so they begin with a quality improvement plan

that includes staff education provided by the university hospital palliative

care service for the prison clinic physicians, medication aides, pharmacists,

nurses and physician assistants. They also meet with the prison volunteer

community clergy to arrange for increased chaplaincy in the clinic. The

pharmacist is committed to help create symptom management protocols. A

community hospice serving the university hospital has offered to open their

bereavement services to families of those who die incarcerated.

Despite the many challenges, the prison clinic staff believe that much can

be done to improve care of seriously ill and dying patients. They are

committed to a long-term plan that they hope eventually may incorporate

more structured hospice services and palliative care throughout the facility.

Domain 3: Psychological and Psychiatric

Aspects of Care

The palliative care interdisciplinary team (IDT) systematically addresses

psychological and psychiatric aspects of care in the context of serious

illness. The IDT conducts comprehensive developmentally and culturally

sensitive mental status screenings of seriously ill patients. The social

worker facilitates mental health assessment and treatment in all care

settings, either directly, in consultation, or through referral to specialist

level psychological and/or psychiatric care. The IDT communicates to the

patient and family the implications of psychological and psychiatric aspects

of care in establishing goals of care and developing a treatment plan,

addressing family conflict, delivering grief support and resources from the

point of diagnosis onward, and providing referrals for patients or family

members who require additional support.

Guideline 3.1 Global

The IDT includes a social worker with the knowledge and skills to assess

and support mental health issues, provide emotional support, and address

emotional distress and quality of life for patients and families experiencing

the expected responses to serious illness. The IDT has the training to assess

and support those with mental health disorders, either directly, in

consultation, or through referral to specialist level psychological and/or

psychiatric care.

Criteria:

3.1.1 Palliative care patients have access to a social worker who can

assess and respond to a range of expected responses to serious

illness, as well as mental health issues.

3.1.2 Recognizing its capacity to care for patients with a comorbid

mental health disorder, the IDT collaborates with specialists as

needed. The palliative care team has defined processes for the

provision of mental health care, including specific roles and

responsibilities of IDT members and specialists.

3.1.3 The IDT includes professionals who have received training in

the potential psychological and psychiatric impact of serious

illness – including potential distressing behavioral changes – on

both patients and families as they relate to psychological well-

being. The IDT has, or has access to, staff with training to:

a. Recognize and treat common psychological issues (eg, anxiety,

depression, delirium, hopelessness, post-traumatic stress disorder, and

substance use disorder and withdrawal symptoms) and more complex

psychiatric issues (eg, suicidal ideation, serious and persistent mental

illness), as well as personality disorders

b. Determine whether presenting issues are diagnosable conditions or

usual responses to serious illness

c. Support patients, families, and staff experiencing compassion fatigue,

moral distress, grief, loss, and bereavement (see Domain 7: Care of

the Patient Nearing the End of Life)

Note: Words bolded in red are defined in the Glossary.

3.1.4 The IDT maintains a safety plan acknowledging potential risks

for patients, families, staff, and volunteers that can arise in

caring for patients with psychological and psychiatric disorders,

especially in community-based care settings.

3.1.5 The IDT has processes to ensure regular and ongoing care

coordination and collaboration with specialty clinicians who are

treating the patient and family, including clinical social workers,

psychologists, psychiatric-mental health advanced practice

registered nurses, counselors, addiction medicine specialists,

psychiatrists, and clinicians with expertise in treating trauma-

based disorders (see Domain 1: Structure and Processes of

Care).

Guideline 3.2 Screening and Assessment

The IDT screens for, assesses, and documents psychological and psychiatric

aspects of care based upon the best available evidence to maximize patient

and family coping and quality of life.

Criteria:

3.2.1 The IDT performs developmentally and culturally sensitive

screening and assessment that at a minimum includes:

a. Emotional distress, anxiety, and depression

b. Patient and family, including parents and siblings, coping strategies

and dynamics related to psychological concerns and distress

c. The presence of delirium and/or dementia

d. Learning or developmental disabilities

e. Cultural considerations related to psychological concerns and distress

f. Spiritual assessment related to psychological concerns and distress

g. Risk of, history, or current substance use disorder

h. Risk or history of attempted suicide

i. Current or previous trauma and/or evidence of posttraumatic stress

disorder (PTSD)

j. Dual diagnosis, pre-existing psychological/psychiatric diagnoses vs.

those stemming from serious illness diagnosis (eg, depression on

diagnosis, side effects of medication)

3.2.2 In cases where the patient does not have decisional capacity, the

IDT identifies the surrogate decision-maker and assesses their

capacity to participate in decision-making on behalf of the

patient.

3.2.3 The IDT assesses the full spectrum of how the patient and

family, including parents and siblings, are coping with serious

illness or, if present, identifies a behavioral health condition.

The IDT incorporates specialists to assist with complex

diagnostic assessment and psychopharmacology management as

needed.

3.2.4 The IDT regularly reassesses and documents treatment efficacy,

response to treatment, and patient and family preferences.

3.2.5 The IDT conducts ongoing assessment and reassessment for

anticipatory grief, as well as the risk of prolonged grief disorder

starting at diagnosis and throughout the illness trajectory (see

Domain 7: Care of the Patient Nearing the End of Life).

Guideline 3.3 Treatment

The IDT manages and/or supports psychological and psychiatric aspects of

patient and family care including emotional, psychosocial, or existential

distress related to the experience of serious illness, as well as identified

mental health disorders. Psychological and psychiatric services are provided

either directly, in consultation, or through referral to other providers.

Criteria:

3.3.1 The IDT systematically and regularly reviews screening and

assessment data related to mental health and psychological well-

being, needs, and gaps in care. Response to identified concerns

is prompt, evidence-based, and in accordance with patient and

family goals of care.

3.3.2 Psychological, mental health, and psychiatric treatment may

include behavioral, therapeutic, and pharmacologic

interventions, as well as complementary therapies, and

culturally specific practices or rituals.

3.3.3 Child and adolescent patients and family members receive care

to address their mental health needs from child life specialists,

integrative therapy professionals, and emotional or mental

health services for pediatric patients.

3.3.4 Either directly or through referral, patients and families,

including parents, children, and siblings at risk for prolonged

grief disorder are provided with services and support based on

best practices.

3.3.5 Regardless of whether the psychological or psychiatric concern

was pre-existing or distinct from the serious illness, treatment

includes:

a. Patient and family education about the disease or condition,

symptoms, treatments, and side effects

b. Patient and family decision-making support

c. Patient and family support in coping with uncertainty, postoperative

complications, and decisional regret

d. Patient support related to a change in prognosis, anticipatory grief,

loss, and emotional responses related to coping with advanced illness

and end of life

e. Prompt information, resources, or referral to professionals as needed

for patients and families at risk for prolonged grief disorder and/or

bereavement, intractable depression and anxiety, suicidal ideation,

delirium, behavioral disturbances, co-morbid substance use disorder,

co-morbid psychiatric diagnoses, and other more complex

psychological and/or psychiatric needs

f. Family support related to anticipatory grief, the emotional aspects of

caregiving, caregiver burden, or practical needs related to caregiving

g. Child, parent, and sibling psychological and mental health support

throughout the trajectory of care, including at times of significant

shift in a patient’s baseline

3.3.6 The IDT addresses the mental health and emotional needs of

perinatal palliative care families receiving the diagnosis of

serious illness during pregnancy, including meeting the needs of

a pregnant mother throughout the duration of her pregnancy,

labor, delivery, and post-partum care.

3.3.7 Either directly or through referral, the IDT supports

opportunities for emotional growth, optimal coping, cognitive

reframing, and completion of important tasks.

3.3.8 The IDT has policies and procedures to respond to requests for

physician aid in dying (see Domain 8: Ethical and Legal

Aspects of Care).

Guideline 3.4 Ongoing Care

The IDT provides recommendations for monitoring and managing long-

term and emerging psychological and psychiatric responses and mental

health concerns.

Criteria:

3.4.1 An ongoing plan is developed to monitor and address

psychological responses, emotions, and/or changes in cognition

as prognosis and goals of care evolve.

3.4.2 Ongoing treatment related to psychological, psychiatric,

existential concerns, post-illness trauma, and PTSD that is

managed by the IDT is coordinated with other care providers.

Clinical and Operational Implications

Clinical Implications

Palliative care teams rely upon social workers and specialists to ensure all

patients and families have access to treatments that are evidence-based and

provided in accordance with their values, assessed needs, and goals of care.

Education related to assessment and treatment of psychological and

psychiatric aspects of care, including substance use disorder, is an essential

element of quality palliative care. Grief assessments and services are

fundamental components of the ongoing palliative plan of care.

Operational Implications

The IDT has policies and procedures related to psychological and

psychiatric care, including timely access to developmentally appropriate

clinical specialists, either directly or through referral.

Essential Palliative Care Skills Needed by

All Clinicians

Clinicians in all care settings can help ease the burden of a serious illness

by screening for, assessing, and managing psychological and/or psychiatric

concerns that may occur. Specific knowledge and skills needed include the

identification and treatment of basic psychological conditions, such as

depression, an understanding of both pharmacological and non-

pharmacological interventions, and effective patient and family education

strategies specific to the mental health diagnosis in the context of serious

illness. In addition, clinicians benefit from an understanding of the

psychological reactions to serious illness, grief, and loss.

When the symptoms are beyond the clinician’s capacity to treat, palliative

care specialists and/or mental health specialists are integrated into the plan

of care. Clinicians need expertise in care coordination between providers

when patients have a cognitive and/or communication impairment or

incapacity or are experiencing extreme mental distress.

Key Research Evidence

The systematic review addressed the following key question: KQ3) What is

the impact of palliative care interventions on psychological and psychiatric

assessment and management of patients? Twenty-six systematic reviews

were identified pertaining to KQ3. The evidence table in the systematic

review describes the key findings of each included review. The summary of

findings table summarizes the research evidence across identified reviews

and describes the quality of evidence. The complete findings are published

online in the Journal of Pain and Symptom Management (doi:

10.1016/j.jpainsymman.2018.09.008).

Practice Examples

Practice Example D3-A

A long-term care facility in a suburban area is concerned with the high

hospitalization rate of its residents, especially near the end of life. The

leadership of the facility commits to incorporating palliative care into

routine care of their seriously ill patients and structuring their program

around the NCP Guidelines. They meet with the case management group at

the local hospital, along with leadership of two area hospices, and strategize

how they can work together to improve the outcomes of their patients. They

identify shared metrics and outcomes and implement shared palliative care

education for all staff. The long-term care facility invests in further training

for the social workers and supports one individual as she works towards

certification in palliative care. The facility enhances the psychological

assessment for all residents and improves the distress screening for new

admissions to long-term care. It standardizes training in facilitating goals of

care discussions and documenting advance care plans with patients and

families. Furthermore, it offers access to grief support for patients and their

families, along with bereavement services for families and staff in

collaboration with its hospice partners.

Practice Example D3-B

A community geriatric practice serves a continuing care retirement

community (CCRC) by providing consultations and ongoing co-

management, with a particular focus on patients with Alzheimer’s and other

dementias. The geriatric advanced practice registered nurses provide regular

home-based follow-up and see patients in the CCRC’s skilled care section,

communicating and collaborating with the facility medical director and/or

the patient’s primary physician. An interdisciplinary team meeting occurs

weekly with the geriatric advanced practice registered nurses, physicians,

the medical director, the director of nursing, the CCRC spiritual care

director, and the nursing home social worker and rehabilitation therapists.

Team members express concern regarding caregiver stress and capacity for

couples living in the assisted living community or independent living when

one member of the couple has dementia. As a result, the practice hires an

advanced practice registered nurse certified in both geriatrics and hospice

and palliative care nursing; he facilitates the development of an expanded

assessment of patient and family caregiver needs and distress. Procedures

are developed to guide symptom assessment and management with an

emphasis on the psychological needs of both patients and family caregivers,

including validated screening for depression. The practice and CCRC form

collaborative relationships with the local hospital palliative care service for

help with patients with concurrent medical illnesses and complex symptom

needs along with a psychiatric practice that includes psychologists and grief

counselors. This growing collaboration between the CCRC and the hospital

palliative care service calls itself the Advance Illness Steering Committee

(AISC) and selects a well-respected community hospice program as a

preferred provider, setting up agreements to share data. The AISC evaluates

ongoing needs for its shared patients, including how to further share

education and resources across the entities to reach quality outcomes and

ways to identify patients as soon as they are eligible for hospice. The

hospice provides additional spiritual care resources and grief and

bereavement support for all families served.

Practice Example D3-C

A large inner-city homeless shelter clinic delivers primary care to seriously

ill homeless people. The homeless shelter clinic collaborates with the

hospital palliative care service, including palliative care training for all the

homeless shelter staff, clinic social workers and psychologists, and

volunteer chaplains. The clinic establishes procedures for screening and

managing depression and other emotional responses to illness, as well as

screening for physical illnesses and symptoms. The homeless shelter clinic

forms collaborative relationships with hospices that offer inpatient care in

long-term care facilities or inpatient units when needed for end-of-life care.

Practice Example D3-D

A pediatric palliative care team at a tertiary children’s hospital developed

a collaborative practice with the pediatric oncology program to optimize

well-being of children throughout their cancer care trajectory. When a

young girl with newly diagnosed metastatic cancer developed severe

anxiety in the presence of clinicians, the palliative care team worked with

the child and her parents to gain trust and assess the causes of her distress.

The palliative team collaborated with child life specialists and the pediatric

clinical psychologist to address the child’s anxiety, using a combination of

play therapy, art therapy, relaxation techniques, and medication. The child’s

mother played an integral role in helping the team to adjust strategies based

on the child’s needs in the hospital, clinic, and home settings. Co-therapy

sessions were facilitated to help the child and her identical twin process

their feelings and anxiety as the disease advanced, providing opportunities

for the child to identify and communicate what was most important to her at

end of life.

Practice Example D3-E

A hospice agency has established a relationship with a Department of

Veterans Affairs Medical Center (VAMC) as one of their community

partners. The hospice agency recognizes the opportunity to improve their

care of Veterans with dual diagnoses of advanced medical conditions along

with psychiatric illnesses. The VAMC identifies palliative care-trained staff

members to collaborate with the hospice interdisciplinary team and give

specialty input. Along with a psychiatrist, one of the VAMC’s pharmacists

voluntarily collaborates with the team. This leads to shared educational

sessions for both entities and improvement in medication and symptom

management for the patients.

Domain 4: Social Aspects of Care

Social determinants of health, hereafter encompassed in the term “social

factors,” have a strong and sometimes overriding influence on patients with

a serious illness. Palliative care addresses environmental and social factors

that affect patient and family functioning and quality of life. The palliative

care interdisciplinary team (IDT) partners with the patient and family to

identify and support their strengths and to address areas of need. The IDT

includes a social worker to maximize patient functional capacity and

achieve patient and family goals.

Guideline 4.1 Global

The palliative care IDT has the skills and resources to identify and address,

either directly or in collaboration with other service providers, the social

factors that affect patient and family quality of life and well-being.

Criteria:

4.1.1 The palliative care IDT includes a social worker with expertise

and experience in:

a. Assessing and supporting emotional aspects of care and improving

quality of life (see Domain 3: Psychological and Psychiatric Aspects

of Care)

b. Identifying and addressing social consequences of a serious illness

c. Collaborating with community-based services and supports and the

organizations providing them

d. Applying care management and care coordination techniques and

evidence-based models of care transitions

e. Working as part of an interdisciplinary team

f. Utilizing patient- and family-centered and developmentally

appropriate approaches to assessment, care planning, care

management, and care delivery

4.1.2 All members of the IDT understand the impact of social factors

on seriously ill patients and family members. The IDT:

a. Is aware of the implications on care when patients are uninsured,

under-insured, undocumented, homeless, or under the custody of the

county or state

b. Is cognizant of the financial impact of serious illness, including the

cost of medications and other treatment, as well as the costs to the

family

c. Provides, directly or through referral, access to follow-up

appointments, treatments, medications, nutrition, and other resources,

as indicated in the plan of care

Note: Words bolded in red are defined in the Glossary.

4.1.3 Palliative care teams serving perinatal and pediatric patients

have expertise in meeting the needs of neonates, children, and

adolescents living with serious illness. Expertise is also needed

to support siblings, as well as parents, in their role as care

providers and decision-makers for their children.

4.1.4 Eligibility for Medicaid or other benefits is determined and

reviewed with the patient and family. The IDT offers assistance

with benefit applications, as needed.

Guideline 4.2 Screening and Assessment

The IDT screens for and assesses patient and family social supports, social

relationships, resources, and care environment based on the best available

evidence to maximize coping and quality of life.

Criteria:

4.2.1 Before involving family or caregivers, the patient or legal

decision-maker identifies who can participate in the assessment

and care planning process, as well as their level of involvement.

4.2.2 The IDT performs developmentally and culturally sensitive

screening and assessment in the setting in which the patient

receives care.

4.2.3 The social assessment includes:

a. Family structure and function, including roles, quality of

relationships, communication, and decision-making preferences and

patterns, as well as an assessment of those involved if the patient is in

the custody of the county or state

b. Patient and family strengths, resiliency, social and cultural support,

and spirituality

c. The availability and ability of a support system to provide respite,

assist with errands and chores, and guard against social vulnerability

d. The effect of illness or injury on intimacy and sexual expression,

prior experiences with illness, disability and loss, risk of abuse,

neglect or exploitation, incarceration, or risk of social isolation

e. Functional limitations that impact activities of daily living (ADLs),

instrumental activities of daily living (IADLs), and cognition

f. Changes in patient or family members’ school enrollment,

employment or vocational roles, recreational activities, and economic

security

g. Identification and documentation if the adult patient or a family

member served in the military, and whether the patient or family

member may be eligible for VA benefits

h. Living arrangements and perceived impact of the living environment

on patient and family quality of life, including safety issues

i. Patient and family perceptions about caregiving needs, including

caregiver availability and capacity

j. The need for adaptive equipment, home modifications, or

transportation

k. Financial vulnerability (eg, ability to pay rent or mortgage and other

bills)

l. Ability to access prescription and over-the-counter medications for

any reason, including functional or financial issues

m. Nutritional needs and food insecurity

n. Advance care planning and legal concerns (see Domain 8: Ethical and

Legal Aspects of Care)

o. Patient and caregiver ability to read and understand information from

health and social service providers, insurance companies, and the

IDT, as well as the ability of the patient and family to ask questions

and advocate for their needs

p. The ability of the patient and/or family to adhere to medication or

treatment regimens

q. Patient and family willingness and ability to engage or accept

resources and referrals

4.2.4 A separate assessment of the family’s needs, resources,

resiliency, and capacity to provide care is also conducted.

Guideline 4.3 Treatment

In partnership with the patient, family, and other providers, the IDT

develops a care plan for social services and supports in alignment with the

patient’s condition, goals, social environment, culture, and setting to

maximize patient and family coping and quality of life across all care

settings.

Criteria:

4.3.1 The IDT engages the patient and family in developing a care

plan that addresses the social needs and is in alignment with

their goals. The care plan:

a. Reflects patient and family culture, values, strengths, goals, and

preferences, which may change over time

b. Assesses factors that prevent the patient from remaining independent

and connected with family and friends

c. Specifies the role and contributions of family members and the types

and sources of support that will be provided to the family

d. Identifies community service providers and the type and amount of

care they will provide

e. Includes developmentally appropriate support for the patient and

family, including children and adolescents

f. Identifies outcomes specific to each goal

4.3.2 The IDT coordinates care with care manager(s) and care team(s)

to address patient- and family-identified social needs, providing

referrals to resources and services as needed.

Guideline 4.4 Ongoing Care

A palliative care plan addresses the ongoing social aspects of patient and

family care, in alignment with their goals and provides recommendations to

all clinicians involved in ongoing care.

Criteria:

4.4.1 The IDT reviews the care with long-term services and

supports and providers involved in ongoing care.

Clinical and Operational Implications

Clinical Implications

The palliative care IDT assesses the social and environmental strengths and

vulnerabilities of patients and families to determine the effect on their

ability to cope with serious illness and maximize quality of life. The IDT

plans for, arranges, and coordinates services and supports to address patient

and family social and functional goals that enable the patient to remain in

the setting of their choice, to the extent possible. The IDT incorporates

specialists in social aspects of care specific to the cultural and

developmental needs of each patient.

Operational Implications

Patients with serious illness in all care settings often have substantial social

and functional needs that require social services and supports. The IDT

allocates resources to ensure ongoing communication and coordination with

existing care managers and providers to optimize patient and family

outcomes.

Essential Palliative Care Skills Needed by

All Clinicians

All clinicians can learn how to perform and integrate social assessments

into the care of seriously ill patients to identify patient strengths,

availability of caregiving and social support, access to reliable food,

housing and transportation, need for adaptive equipment, and other social or

environmental issues. This knowledge helps the clinician identify and

implement developmentally appropriate approaches to assessment, care

planning, care management, and care delivery. Understanding the social

consequences of a serious illness enables the clinician to support the

ongoing practical and social needs, including the identification of patient

and family coping strategies. In addition, indentifying and addressing

indicators of caregiver isolation and burnout are critically important in

achieving patient and family goals. Palliative care specialists can provide

consultations or ongoing care management as needed to address complex

family dynamics or intense social needs.

Key Research Evidence

The systematic review addressed the following key question: KQ4) Does an

assessment of environmental or social needs as part of a comprehensive

palliative assessment improve needs identification and access to relevant

services? Two systematic reviews were identified pertaining to KQ4. The

evidence table in the systematic review describes the key findings of each

included review. The summary of findings table summarizes the research

evidence across identified reviews and describes the quality of evidence.

The complete findings are published online in the Journal of Pain and

Symptom Management (doi: 10.1016/j.jpainsymman.2018.09.008).

Practice Examples

Practice Example D4-A

A community hospital recognizes the need to integrate palliative care into

the care of patients with serious illness. The hospital is served by

independent physician practices and also has employed intensivists and

emergency department staff. To support the needs of the patient population,

the hospital pays for palliative care training for all inpatient and outpatient

social workers, and three achieve advanced certification. Seriously ill

patients are screened at admission to identify those with high-risk and high

utilization patterns; these patients receive a more in-depth social work

assessment. Out- and inpatient social workers are asked to do a joint visit at

the end of the hospitalization for these patients to facilitate continuity. The

hospital conducts a biweekly care conference to review all palliative care

patients – the conference is expanded to include hospitalists, advanced

practice providers, registered nurses, spiritual care, and emergency

department leaders. The emergency department recruits a physician trained

and certified in palliative care.

Practice Example D4-B

A children’s hospital has recognized the need to expand palliative care

integration beyond the current inpatient palliative care team. Social workers

and child life therapists in the outpatient setting already conduct an in-depth

psychosocial assessment of every new patient and family within 14 days of

the start of outpatient care. This information is recorded in the outpatient

medical record and has not been available to inpatient teams, yet it has great

importance in managing transitions of care. The hospital commits to

implementing a single electronic medical record for inpatient and outpatient

care. Representatives of the psychosocial outpatient team begin attending

the inpatient palliative care interdisciplinary team meetings to enhance

communication and information sharing. Patients admitted who will not be

seen in follow-up in the hospital clinics receive the in-depth psychosocial

assessment while hospitalized. A process to routinely identify these patients

and to share this information with the healthcare providers who will be

seeing the patient and family after discharge is under development.

Practice Example D4-C

A community hospital has its own medical group including disease

specialists. The hospital’s strategic plan includes improving care for

patients with advanced heart failure, as these patients represent the highest

utilizers and greatest expense to the health system. The hospital endorses

the creation of a specialty heart failure clinic and asks clinical leadership to

guide the development, including the integration of palliative care services.

Although the heart failure clinic team has physicians, advanced practice

registered nurses, nurses, a therapist, a social worker, and a chaplain, there

is little direct communication and collaboration between team members.

The heart failure clinic social worker identifies caregiver stress as a key

driver of hospital re-admission and collaborates with the palliative care

advanced practice registered nurse to develop an assessment of caregiver

capacity and distress. Poor family member understanding of what to expect

in progressive heart failure and lack of confidence in handling after hour

emergencies emerge as central themes. The social worker and advanced

practice registered nurse work with all members of the heart failure team to

create patient and family teaching materials in multiple languages. The

chaplain initiates a weekly family support group for caregivers that includes

a telephone option for those who can’t leave the house. A regular heart

failure team meeting is established to review the needs of patients and their

caregivers and identify those patients eligible for hospice services. These

changes in the clinics’ function lead to improvement in utilization patterns

and the hospital invests in a new telehealth system to further enhance

monitoring and communication in support of high-risk heart failure patients

and their caregivers.

Practice Example D4-D

An independent rural community dialysis center serves a broad

geographic area and recognizes high levels of distress and ED and hospital

utilization among its patients and their family caregivers. The dialysis staff

(its nephrologists and nurses) have pursued palliative care training and the

practice has hired a physician assistant with several years’ experience

working in palliative care at one of the tertiary hospitals that serves the

same geographic area. The dialysis center team discusses the worrisome

connection between caregiver strain and patient outcomes and decide to

target family caregiver support as a quality improvement project. Led by the

dialysis center social worker, two initiatives are launched: a recurring

instructional session for patients and family caregivers on symptom

management at home; and a monthly peer support group for family

caregivers. The center also recognizes many adult children of the dialysis

patients have moved away from the rural area. The social worker arranges

web-based technologies to allow participation of remote family members in

care conferences with the interdisciplinary team, which are now held

routinely and with any changes in patient status or goals of care.

Practice Example D4-E

A social worker in a community hospice has a particular interest in

perinatal loss and has studied how programs across the country provide

support for mothers and extended family members anticipating such a loss.

With leadership support, she and others in the hospice reach out to the

hospital-based obstetrics practice to see if there is an interest in co-creating

a palliative team to serve these patients and their families. These

conversations lead to a collaborative service that provides early access to

grief support for expectant mothers and their families while the woman are

pregnant, and bereavement follow-up after the loss. The hospice identifies

and coordinates with other programs if the women do not live locally or if

family members from out of town request grief and bereavement support.

Practice Example D4-F

A hospice program affiliated with a critical access hospital recognizes a

high number of its patients prefer not to die at home. After exploration of

the cultural norms of the community the hospice decides to build a hospice

house to provide an alternative home-like setting. The house is well

received and supported by the community. Soon, the hospice house begins

receiving calls from community members who have a variety of needs

unrelated to a terminal condition. The hospice utilizes the NCP Guidelines

to develop a community-based palliative care program focused on the social

determinants of care needs of community members. The hospice medical

director oversees the work of a registered nurse, and the registered nurse

collaborates with the hospice social worker as needed. The registered nurse

facilitates the work of a trained group of volunteers to facilitate advance

care planning and connect people to services within the community. The

primary care physician receives visit documentation when applicable. The

program tracks completion of advance directives and connections to various

services to demonstrate the need for and value of the program to the local

hospital and the community.

Domain 5: Spiritual, Religious, and

Existential Aspects of Care

Reference to spiritual care within the NCP Guidelines also refers to

religious and/or existential depending on the context.

Spirituality is recognized as a fundamental aspect of compassionate, patient

and family-centered palliative care. It is a dynamic and intrinsic aspect of

humanity through which individuals seek meaning, purpose, and

transcendence, and experience relationship to self, family, others,

community, society, and the significant or sacred. Spirituality is expressed

through beliefs, values, traditions, and practices.1 Palliative care

interdisciplinary teams (IDT) serve each patient and family in a manner that

respects their spiritual beliefs and practices. Teams are also respectful when

patients and families decline to discuss their beliefs or accept spiritual

support.

Guideline 5.1 Global

Patient and family spiritual beliefs and practices are assessed and respected.

Palliative care professionals acknowledge their own spirituality as part of

their professional role and are provided with education and support to

address each patient’s and family’s spirituality.

Criteria:

5.1.1 The IDT has clearly defined policies and processes in place to

ensure spiritual care is respectful of patient and family age,

developmental needs, culture, traditions, and spiritual

preferences.

5.1.2 Either directly, through referral, or in collaboration with the

professional chaplain, the IDT facilitates spiritual and cultural

rituals or practices as desired by the patient and family.

5.1.3 IDT members respect patient and family beliefs and practices,

never imposing their individual beliefs on others.

5.1.4 The spiritual needs of family members may differ from those of

the patient and are recognized and supported.

5.1.5 Care of children, adolescents, and their family members

recognizes that spirituality is integral to coping with serious

illness and is provided in a developmentally appropriate manner.

5.1.6 In all settings, the IDT includes professional chaplains who

have evidence-based training to assess and address spiritual

issues frequently confronted by pediatric and adult patients and

families coping with a serious illness.

5.1.7 The professional chaplain is the spiritual care specialist,

conducting the assessment and addressing the spiritual aspects

of the care plan.

5.1.8 Professional chaplains develop community partnerships to

ensure patients have access to spiritual care providers trained

and supervised by a professional chaplain. The IDT and

community spiritual care providers share information and

coordinate services.

Note: Words bolded in red are defined in the Glossary.

5.1.9 The IDT integrates the patient’s and/or family’s faith

community into the care plan when requested.

5.1.10 Led by the professional chaplain, opportunities are provided to

engage staff in self-care and self-reflection regarding their own

spirituality.

5.1.11 Every member of the IDT is trained in spiritual care and

recognizes the importance of the spiritual aspects of care.

5.1.12 Members of the IDT receive training to cultivate an openness to

the spirituality of patients and families through empathic

listening.

Guideline 5.2 Screening and Assessment

The spiritual assessment process has three distinct components − spiritual

screening, spiritual history, and a full spiritual assessment. The spiritual

screening is conducted with every patient and family to identify spiritual

needs and/or distress. The history and assessment identify the spiritual

background, preferences, and related beliefs, values, rituals, and practices

of the patient and family. Symptoms, such as spiritual distress and spiritual

strengths and resources, are identified and documented.

Criteria:

5.2.1 All aspects of the screening, history, and assessment are

conducted using standardized tools.

5.2.2 Spiritual screening is completed as part of every clinical

assessment to identify spiritual distress and the need for urgent

referral to a professional chaplain. Screening is designed to

evaluate the presence or absence of spiritual needs and spiritual

distress.

5.2.3 IDT members also include a spiritual history as part of the

clinical evaluation in the initial assessment process. A spiritual

history identifies patient preferences and values that may affect

medical decision-making.

5.2.4 A spiritual assessment is triggered based upon the results of the

spiritual screening and history. It is an in-depth and ongoing

process of evaluation of spiritual needs, results in a plan of care,

and is conducted by a professional chaplain as the spiritual care

specialist, in collaboration with the faith community, based upon

patient wishes.

5.2.5 The spiritual assessment explores spiritual concerns including,

but not limited to:

a. Sources of spiritual strength and support

b. Existential concerns such as lack of meaning, questions about one’s

own existence, and questions of meaning and suffering

c. Concerns about relationship to God, the Holy, or deity, such as anger

or abandonment

d. Struggles related to loss of faith, community of faith, or spiritual

practices

e. Cultural norms and preferences that impact belief systems and

spiritual practices

f. Hopes, values and fears, meaning, and purpose

g. Concerns about quality of life

h. Concerns or fear of death and dying and beliefs about afterlife

i. Spiritual practices

j. Concerns about relationships

k. Life completion tasks, grief, and bereavement

Guideline 5.3 Treatment

The IDT addresses the spiritual needs of the patient and family.

Criteria:

5.3.1 Spiritual elements of the plan of care are based on needs, goals,

and concerns identified by patients and families, recognizing

and maximizing patient and family spiritual strengths. The care

plan, including religious rituals and other practices, details the

expected outcomes of care.

5.3.2 Patient and family spiritual needs are addressed according to

established processes, documented in the interdisciplinary care

plan, and emphasized during transitions of care, including

identification of significant practices which bring strength and

comfort to the patient.

5.3.3 Professional and institutional use of symbols and language are

inclusive of patient and family cultural and spiritual preferences.

5.3.4 The patient and family are supported and accommodated in

their desires to display and use their own spiritual and/or

cultural symbols.

5.3.5 Palliative care teams serving pediatric patients have expertise in

honoring and meeting the spiritual needs of children and

adolescents, including in situations where children or

adolescents have differing values, beliefs and needs from their

parents or designated decision-makers.

Guideline 5.4 Ongoing Care

Patient and family spiritual care needs can change as the goals of care

change or patients move across settings of care.

Criteria:

5.4.1 Throughout the trajectory of the patient’s illness, the IDT

performs spiritual screening to identify new or emergent issues,

identifying services and supports to help navigate these

transitions. Changes in prognosis and other significant

transitions prompt reassessment of spirituality.

5.4.2 The plan of care continues to evolve based upon the changing

needs of the patient and family.

Clinical and Operational Implications

Clinical Implications

Spiritual care is an essential component of quality palliative care. Spiritual

care services including screening, history, and assessment are performed on

admission and regularly thereafter. Interventions using professional

standards of practice are part of the basic provision of quality care available

to all palliative patients.

Operational Implications

Specialist-level palliative care programs include salaried professional

chaplains and related programmatic expenses. Clinicians serving seriously

ill populations may develop affiliation agreements with spiritual care

departments in health systems, hospitals, or hospice programs that can

provide timely access to professional chaplain services. Even when these

resources are available, partnerships with faith community leaders are

encouraged and nurtured. The IDT has policies and procedures regarding

spiritual care consultation and processes for referrals.

Essential Palliative Care Skills Needed by

All Clinicians

The process and tools needed to conduct a spiritual screening and

assessment for spiritual distress and spiritual needs can be learned by all

clinicians. In addition, clinicians can learn to identify and utilize resources

available on the team, within the patient and family, or in the community or

care setting to ensure that spiritual needs are promptly addressed.

Key Research Evidence

The systematic review addressed the following key question: KQ5) What is

the effect of a spiritual assessment and/or interventions on patient and

family/caregiver spiritual and emotional wellbeing? Eleven systematic

reviews were identified pertaining to KQ5. The evidence table in the

systematic review describes the key findings of each included review. The

summary of findings table summarizes the research evidence across

identified reviews and describes the quality of evidence. The complete

findings are published online in the Journal of Pain and Symptom

Management (doi: 10.1016/j.jpainsymman.2018.09.008).

Practice Examples

Practice Example D5-A

A large health system includes several outpatient clinics and hospitals

across a broad geographic area. Not every site has the same scope of

services and staff resources and budgets are tight. The health system has

committed to integrating palliative care as a component of patient-centered

care and to align with the NCP Guidelines. The expanding service area and

diverse patient populations reveal the need for expansion of spiritual care

services across the system. A board-certified professional chaplain at one of

the larger hospitals in the health system serves as a champion and convener

of spiritual care resources across the health system. She and her team

promote implementation of screening for spiritual distress for all inpatients,

along with a template for this information in the medical record. This

screening tool is integrated into the outpatient oncology clinics across the

system. The central team creates educational materials and procedures that

help the regional hospitals and clinics to develop relationships with

community spiritual care providers and local faith community leaders to

meet the diverse needs of their local patient populations.

Practice Example D5-B

A rural hospital has no formal palliative care team, but the hospitalist

physicians, physician assistants, advanced practice registered nurse, and

hospital nurses, commit to developing and growing palliative care at their

institution. They form a workgroup of interested hospital staff and

community members. The hospital has seen a dramatic shift in the

population served as its community has welcomed many Eastern European

immigrants. Furthermore, the closure of the county hospital in the

neighboring urban area has led to higher ethnic diversity than the hospital

had known. Working through the NCP Guidelines, the palliative care

workgroup recognizes that it should prioritize the diverse spiritual needs of

patients who are seriously ill or dying in the hospital. The Ethics Committee

also notes that many consultations have been related to cultural clashes

involving spiritual beliefs and practices. The social work department works

with the palliative care workgroup to identify spiritual care providers in the

community who are available to come to the hospital as requested to meet

the diverse needs of the patients. An educational series is held for all staff to

increase understanding of the range of spiritual and religious traditions of

community members. The hospital adopts a new policy on “Compassionate

Care Near the End of Life” which incorporates key principles from the NCP

Guidelines. The palliative care workgroup arranges to meet via

videoconference with the palliative care specialty service at a regional

hospital each quarter to discuss challenging cases.

Practice Example D5-C

A pediatric oncology program has recruited a physician dually boarded in

oncology and palliative medicine, along with a pharmacist skilled in the

pharmacology of symptom management. Staff and family caregiver

education in symptom management improves rapidly. At the monthly staff

meeting, several individuals acknowledge these improvements but request

attention to the spiritual care of the children and families they serve. The

staff feels poorly equipped to address the needs of parents and families from

diverse religious traditions. They feel unsure of how to respond effectively

to the spiritual experiences children may report, such as communication

with deceased relatives, visits from “angels,” and awareness of their

impending death. The pediatric oncology program adopts improved

spiritual care as a goal for the next quarter, using the NCP Guidelines as a

framework for its quality improvement plans. The 0.20 full-time equivalent

(FTE) professional chaplain assigned to this unit leads these efforts,

including the development of strategies to standardize spiritual assessment

of all children and their families and a focus on incorporating spiritual care

in the plan of care. While resources are stretched in this setting, the team

believes that the combined efforts of all the staff, including child

psychology, art and music therapy, and child life specialists, can make a

major improvement in spiritual care.

Practice Example D5-D

A national company establishes specialty practices to deliver home-based

palliative care in rural and urban settings. Spiritual distress screening during

the comprehensive palliative assessment reveal that more than 90% report

no unmet spiritual needs, as they are actively engaged with their own faith

community. To meet the needs of the remaining patients, families, and the

IDTs, the central office employs a professional chaplain to actively

participate in all the IDT meetings by phone, with some site visits. The

chaplain creates policies and procedures on the spiritual care of patients and

families. He helps local practices facilitate connection with local faith

community leaders and develops contracts with local hospices for home-

based spiritual care services when necessary. These visiting hospice

chaplains are contracted to the local palliative care practices to provide

patient and family visits. They identify themselves as part of the palliative

care team, rather than their hospice employer. However, their connection

with the local hospice is helpful when a hospice transition occurs to provide

continuity and a familiar face for the patient and family.

Endnotes

1 Puchalski CM, Ferrell B. Making health care whole: integrating

spirituality into patient care. West Conshohocken, PA: Templeton Press;

2010.

Domain 6: Cultural Aspects of Care

Assessing and respecting values, beliefs and traditions related to health,

illness, family caregiver roles and decision-making are the first step in

providing culturally sensitive palliative care. Palliative care

interdisciplinary team (IDT) members continually expand awareness of

their own biases and perceptions about race, ethnicity, gender identity and

gender expression, sexual orientation, immigration and refugee status,

social class, religion, spirituality, physical appearance, and abilities.

Information gathered through a comprehensive assessment is used to

develop a care plan that incorporates culturally sensitive resources and

strategies to meet the needs of patients and family members. Respectful

acknowledgment of and culturally sensitive support for patient and family

grieving practices is provided.

Guideline 6.1 Global

The IDT delivers care that respects patient and family cultural beliefs,

values, traditional practices, language, and communication preferences and

builds upon the unique strengths of the patient and family. Members of the

IDT works to increase awareness of their own biases and seeks

opportunities to learn about the provision of culturally sensitive care. The

care team ensures that its environment, policies, procedures, and practices

are culturally respectful.

Criteria:

6.1.1 The IDT asks the patient or surrogate to identify and define

family, which may include members of the family of origin, as

well as the patient’s family of choice.

6.1.2 IDT members recognize that the provision of quality palliative

care requires an understanding of the patient’s and family’s

culture and how it relates to their decision-making process, and

their approach to illness, pain, psychological, social, and

spiritual factors, grief, dying, death, and bereavement.

6.1.3 The IDT understands that each person’s self-identified culture

includes the intersections of race, ethnicity, gender identity and

expression, sexual orientation, immigration and refugee status,

social class, religion, spirituality, physical appearance, and

abilities.

6.1.4 The IDT recognizes that patients and families may have

experienced barriers to receiving culturally respectful health

care, and that these prior experiences may result in mistrust of

the health care system.

6.1.5 The IDT commits to continuously practice cultural humility

and celebrate diversity.

6.1.6 In delivering culturally sensitive care, the IDT regularly

participates in trainings to increase cross-cultural knowledge,

empathy, and humility. The IDT focuses on building and

practicing these skills to avoid imposing personal values,

beliefs, and biases on the patient and family. The IDT also

recognizes that culture is a strength that patients and family

members bring to their plan of care.

Note: Words bolded in red are defined in the Glossary.

6.1.7 Communication occurs using verbal, nonverbal, and/or

symbolic means appropriate to the patient, with particular

attention to cultural and linguistic considerations, cognitive

capacity, the presence of learning or developmental disabilities,

and the developmental stage across the lifespan.

6.1.8 The IDT implements policies regarding recruitment, hiring,

retention, and promotion practices to reflect the cultural and

linguistic diversity of the community it serves, to the extent

possible.

6.1.9 The care team regularly evaluates and, if needed, modifies

services, policies, and procedures to maximize cultural

sensitivity and reduce disparities in care. Input from patients,

families, and community stakeholders is elicited and integrated

into this process.

6.1.10 The IDT is aware of cultural factors that may necessitate

changes in staffing assignments (eg, a patient who can only

receive hands-on care from someone of the same gender).

Policies and procedures are in place to identify these issues and

substitute staff, when possible, so that patient preferences are

respected.

6.1.11 The IDT performs a community assessment to identify

underserved populations in need of palliative care.

Guideline 6.2 Communication and

Language

The IDT ensures that patient and family preferred language and style of

communication are supported and facilitated in all interactions.

Criteria:

6.2.1 Palliative care staff tailor their communication to the patient and

family’s level of health literacy.

6.2.2 When patients and families do not speak or understand English,

or prefer communicating in a language other than English, the

IDT uses qualified medical interpreter services, either in person

or via telephone or video.

a. When possible, the need for medical interpreter services is assessed

and addressed before the patient and family encounter to reduce the

likelihood of communication issues and misunderstandings.

b. Prior to the patient and family encounter, the medical interpreter is

provided a summary of the anticipated focus of the conversation.

c. If medical interpreter services are unavailable, bilingual clinicians

provide information in the patient and family’s preferred language.

Family members are not placed in the role of interpreter.

6.2.3 The IDT asks about preferred ways of receiving materials and

information and uses culturally representative images and

language in printed and online materials.

6.2.4 Written materials in each patient- and family’s preferred

language is provided by the IDT. When accurately translated

written materials are unavailable, the program utilizes medical

interpreter services to facilitate patient and family understanding

of program information.

6.2.5 The IDT uses the patient’s preferred pronouns (eg, he, she, they)

in all communication, including documentation.

6.2.6 As needed or upon request, the IDT incorporates cultural

representatives/cultural brokers in the plan of care.

Guideline 6.3 Screening and Assessment

The IDT uses evidence-based practices when screening and assessing

patient and family cultural preferences regarding health care practices,

customs, beliefs and values, level of health literacy, and preferred language.

Criteria:

6.3.1 Before the screening and assessment, the IDT recognizes the

need to be:

a. Non-judgmental of the patient and family

b. Mindful of potential biases

c. Conscious of historical trauma and how it can impact patient and

family care

d. Aware of power dynamics inherent in patient and family care

6.3.2 During the assessment process, the IDT elicits and documents:

a. Cultural practices, customs, beliefs, and values relevant during

serious illness, the dying process, at the time of death, and post-death

b. Patient’s preferred name, pronouns, and gender identity

c. Preference for IDT interaction, including whether decision-making

will be communal, collective, or individualistic, with attention to

patient and/or family preferences for participation in the decision-

making process

d. Truth-telling and whether the preferred cultural practice is to share or

not share diagnosis and/or prognosis with the patient

e. Preferred and taboo practices (eg, using the words “dying” and

“death” or the place of death)

f. Community resources and supports, including community leaders,

faith community, or cultural groups

g. Preferences related to physical contact

h. Level of health literacy

i. Prior health care experiences with attention to historical trauma and

impact on care

j. Perception of illness and disability, including patient understanding

of, and what caused, their illness

k. Beliefs about pain and suffering

l. Perceptions of and approaches to help-seeking (eg, reluctance to

accept “charity” or from anyone other than the family and/or faith

community)

m. Differing levels of acculturation within the family that can impact

decision-making

n. Use of traditional healing practices and involvement of traditional

medicine practitioners or healers

6.3.3 When the patient is a child or adolescent the IDT assessment

also identifies:

a. The role of the child or adolescent in the family and how culture

defines a minor’s status in the family

b. Whether parents share information about important matters with their

child(ren), including siblings and foster children, and whether these

decisions reflect the family’s cultural preferences

c. How the parents define being a good parent, and how that impacts

medical decision-making

d. Whether the family’s culture permits parents to make decisions for

their minor or if medical decision-making authority is deferred to

religious or cultural leaders

e. The meanings attributed by the minor and family regarding how and

why the illness occurred, childhood suffering and death, and how that

impacts decision-making

f. When serious illness is diagnosed in utero (perinatal), the meaning of

the pregnancy and childbirth practices are valued in the parent’s

culture(s)

6.3.4 The IDT reaches out to cultural representatives if lacking

information and/or experience with regard to the patient’s

culture.

Guideline 6.4 Treatment

A culturally sensitive plan of care is developed and discussed with the

patient and/or family. This plan reflects the degree to which patients and

families wish to be included as partners in decision-making regarding their

care. When hosting meetings to discuss and develop the plan, the IDT

ensures that patient and family linguistic needs are met.

Criteria:

6.4.1 The plan of care incorporates and the IDT verbally and non-

verbally communicates respect for:

a. Who the patient defines as their family

b. Beliefs, values, and traditional practices

c. Language and communication preferences

d. Level of health literacy

6.4.2 If historical trauma was assessed the treatment plan adopts a

trauma-informed approach to develop trust over time.

6.4.3 When a traditional healer is involved, the care team ensures that

the healer participates in care planning discussions.

6.4.4 With patient and/or family permission, IDT members involve

cultural representatives to develop a care plan that honors

cultural practices.

6.4.5 When discussing diagnosis and/or prognosis, preferences

regarding taboo language, as well as truth telling are respected,

prioritizing fidelity to the patient (see Domain 8: Ethical and

Legal Aspects of Care, including 8.4.6 for truth-telling with

children and adolescents living with serious illness).

6.4.6 The IDT ensures that culturally respectful grief support is

available.

Clinical and Operational Implications

Clinical Implications

In order for patients and family members to receive culturally sensitive

care, it is incumbent on professionals to continually explore their own

biases, work to suspend judgment, and seek frequent training to further

enhance and strengthen their cultural assessment, treatment, and

communication skills.

Operational Implications

Palliative care teams perform a cultural assessment of all policies,

processes, and practices, build strong relationships with communities and

their cultural representatives, maximize service delivery to vulnerable

populations, and address disparities in care. All employees receive training

in cultural humility, the provision of patient-centered culturally sensitive

care, and appropriate use of interpreter services and translated materials.

Essential Palliative Care Skills Needed by

All Clinicians

Clinicians can acquire knowledge and skills to recognize how culture

influences patient and family decision-making, their approach to illness,

pain, psychological, social and spiritual factors, and grief, dying, death and

bereavement. Clinicians incorporate palliative care specialists and cultural

representatives into the care plan to navigate cultural nuances, as needed.

Key Research Evidence

The systematic review addressed the following key question: KQ6) What is

the impact of culturally- and linguistically-sensitive care on physical,

social, emotional, and spiritual wellbeing of the patient and

family/caregiver? Three systematic reviews were identified pertaining to

KQ6. The evidence table in the systematic review describes the key

findings of each included review. The summary of findings table

summarizes the research evidence across identified reviews and describes

the quality of evidence. The complete findings are published online in the

Journal of Pain and Symptom Management (doi:

10.1016/j.jpainsymman.2018.09.008).

Practice Examples

Practice Example D6-A

A long-term care community incorporates palliative care screening and

assessments into the care plan for all its residents with serious illness, and

includes an interdisciplinary team in the regular family case review. This

community has experienced a significant demographic shift over time with

more aging residents who have recently immigrated to the area to be near

family, as well as an aging lesbian, gay, bisexual, transgender, queer,

intersex, asexual (LGBTQIA) community. To promote culturally respectful

palliative care, this long-term care community expands its comprehensive

assessment to better assess values, beliefs, and traditions related to health,

illness, chosen family, caregiver roles, and decision-making. All patients are

asked to identify their gender identity and preferred pronouns. A more

comprehensive cultural assessment is completed on admission and

reviewed with status changes of the resident’s condition. The community

provides an ongoing educational series for all staff related to culturally

respectful care.

Practice Example D6-B

A palliative care program on a Native American reservation provides

palliative care to adults in the hospital and clinic settings. The program has

three palliative care specialist physicians within its family medicine

practice. The interdisciplinary team is created to reflect the needs of the

people it serves and includes team members with shared roles:

• Registered nurses who provide hands on care and care coordination

• Social workers who also serve as translators for native-speaking

patients and families

• Patient advocates from the community who help patients complete

advance directives

• Dieticians who provide supplements to eligible patients and help with

diabetes teaching and counseling

• A medicine man who offers spiritual support performing rituals for

patients, family members, as well as the staff

Practice Example D6-C

A hospice provides a rural telehealth palliative care program to support

underserved populations. The program consists of a comprehensive in-

person assessment conducted by a palliative care specialist followed by

weekly nurse coaching sessions by telephone. The registered nurse coaches

receive intensive training in symptom management, as well as problem

solving and supporting patient-family decision-making skills. They help

coordinate and connect the patients and families to other resources and

prompt clinical visits when necessary.

Practice Example D6-D

A public hospital struggles to provide palliative care services with limited

resources and the complex needs of its socioeconomically disadvantaged

and culturally diverse patient population. Some patients do not live in areas

where there are hospice programs, so the hospital has made referrals to the

public health department for follow-up nursing care for the seriously ill

patients. A hospital discharge to the home of a dying Hmong child

demonstrated the need for better communication and training of the

expanded team. The public health nurse making the home visit had not been

briefed on the imminent death of the child or the cultural observances of the

family and unfortunately misinterpreted them – prompting a 911 transport

despite the family’s objections. The child died in the ambulance. The

palliative care service is working with others to better highlight and

explicitly communicate the cultural context of care within the written and

verbally transmitted medical discharge plans, and to collaborate more

actively with community partners through education and training.

Practice Example D6-E

A large community hospice would like to better serve the Hispanic and

Latino population in its urban community. There are many misconceptions

regarding hospice care and advance care planning. The hospice and the

local community center work together to create a program for local public

radio. The program is set up as a multi-episode radio novella story of a

family with an aging grandmother who is reaching the end of life, and the

challenges the family faces with her care and with the hospital. The radio

novella is an entertaining and engrossing way to present information around

advance care planning, correct misunderstandings about hospice, and

educate people about end-of-life care. Families in the community identify

the radio program as helping pave the way for them to understand and

utilize hospice care when it is indicated. The process also creates a powerful

collaboration between the hospice and local community center that better

supports families with grief and bereavement needs and creates a more

culturally sensitive bereavement program.

Practice Example D6-F

A large pediatric tertiary care hospital provides palliative care to a

diverse patient population. To better serve patients and families whose

primary language is not English, the team partners with the medical

interpreter services department to provide education on palliative care

topics. The team meets with the interpreter prior to patient and family

encounters to prepare the interpreter for the topics that will be discussed. In

addition, an interpreter is assigned primary responsibility for palliative care

patients and is a member of the weekly palliative care interdisciplinary

rounds. Palliative care team members have found incorporating medical

interpreter services into the IDT to be extremely helpful, and it has resulted

in improvements in patient- and family communication and increased

cultural sensitivity. Incorporating the interpreter into the palliative care team

offers opportunities for additional support for the interpreter staff, for

debriefing for both the team and the interpreter staff, and enhanced cultural

competency for IDT members.

Domain 7: Care of the Patient Nearing

the End of Life

This domain highlights the care provided to patients and their families near

the end of life, with a particular emphasis on the days leading up to and just

after the death of the patient. The meticulous and comprehensive

assessment and management of pain and other physical symptoms, as well

as social, spiritual, psychological, and cultural aspects of care, are critically

important as the patient nears death. It is essential that the interdisciplinary

team (IDT) ensures reliable access and attention in the days before death,

and provides developmentally appropriate education to the patient, family

and/or other caregivers about what to expect near death, as well as

immediately following the patient’s death.

The interdisciplinary model of hospice care is recognized conceptually and

philosophically as the best care for patients nearing the end of life.

Discussion regarding hospice as an option for support should be introduced

early so that patients and families can understand eligibility, and the

benefits and limitations of accessing this care model. Early access to

hospice support should be facilitated whenever possible to optimize care

outcomes for the patient and the family. Palliative care teams, hospice

providers and other healthcare organizations must work together to find

innovative, sustainable supportive care solutions for all patients and

families in their final months of life.

Guideline 7.1 Interdisciplinary Team

The IDT includes professionals with training in end-of-life care, including

assessment and management of symptoms, communicating with patients

and families about signs and symptoms of approaching death, transitions of

care, and grief and bereavement. The IDT has established structures and

processes to ensure appropriate care for patients and families when the end

of life is imminent.

Criteria:

7.1.1 IDT members have training and expertise regarding care of

patients nearing the end of life. Staff training includes:

Note: Words bolded in red are defined in the Glossary.

a. Ensuring frequent telephone and in-person contact with patient and

family caregivers in the days before death

b. Supporting notification of distant family and friends, as desired by

the patient and family caregivers

c. Assessing and managing physical symptoms that are common among

patients nearing the end of life, including, but not limited to, pain,

dyspnea, nausea, agitation, delirium, and terminal secretions (see

Domain 2: Physical Aspects of Care)

d. Identifying signs and symptoms of approaching death, and what can

be expected before and after the patient dies

e. Talking about approaching death with patients and families

f. Identifying spiritual concerns related to dying, death, and beliefs

about the afterlife (see Domain 5: Spiritual, Religious, and Existential

Aspects of Care)

g. Facilitating cultural assessments and attending to the cultural aspects

of care at the end of life, including cultural rituals and beliefs related

to dying, death, or the afterlife (see Domain 6: Cultural Aspects of

Care)

h. Supporting legacy building activities, including life review, notes to

family and friends, or a video diary

i. Supporting resolution of legal issues (see Domain 8: Ethical and

Legal Aspects of Care)

j. Coordinating care for patients and the importance of seamless care

transitions

k. Discussing hospice eligibility and services

l. Planning for post-death care, including funeral planning

m. Assessing and addressing the needs of children or adolescents facing

the loss of a family member, including custody arrangements as

needed, and coordinating with perinatal and pediatric grief specialists

as needed

n. Providing grief and bereavement support

Guideline 7.2 Screening and Assessment

The IDT assesses physical, psychological, social, and spiritual needs, as

well as patient- and family preferences for setting of care, treatment

decisions, and wishes during and immediately following death. Discussions

with the family focus on honoring patient wishes and attending to family

fears and concerns about the end of life. The IDT prepares and supports

family caregivers throughout the dying process, taking into account the

spiritual and cultural background and preferences of the patient and family.

Criteria:

7.2.1 The IDT:

a. Assesses for signs and symptoms that the patient is nearing death

b. Prepares family and other caregivers regarding how to recognize and

manage common symptoms

c. Reviews and confirms treatment decisions, including potential

transitions in care settings, and documents patient wishes and

preferences

d. Reviews advance directives (as applicable) and honors the patient’s

wishes

e. Provides information and support to the family and others who are

providing care to the patient

7.2.2 For patients who have not accessed hospice, the IDT discusses

the benefits of hospice with the patient and family.

7.2.3 Before the patient’s death, the IDT discusses autopsy, organ and

tissue donation, and anatomical gifts in a culturally sensitive and

age-appropriate manner, adhering to applicable organizational

policies and laws.

Guideline 7.3 Treatment Prior to Death

In collaboration with the patient and family and other clinicians, the IDT

develops, implements, and updates (as needed) a care plan to anticipate,

prevent, and treat physical, psychological, social, and spiritual symptoms.

The care plan addresses the focus on end-of-life care and treatments to meet

the physical, emotional, social, and spiritual needs of patients and families.

All treatment is provided in a culturally and developmentally appropriate

manner.

Criteria:

7.3.1 With the involvement of the patient and family, a plan is

developed to meet patient needs during the dying process, as

well as the needs of family members before, during, and

immediately following the patient’s death. Cultural and spiritual

preferences of the patient and family are particularly relevant

when developing this plan. Reassessment and revision of the

plan occurs regularly, with the frequency identified in agency or

program policies.

7.3.2 Care of the patient at the end of life is time- and detail intensive,

requiring expert clinical, psychological, social, and spiritual

attention to the process as it evolves.

7.3.3 The IDT continues to evaluate the best setting of care for the

patient, including consideration of patient- and family wishes

and caregiver capacity, as well as the evaluation of symptom

management issues that may need an inpatient stay or a higher

level of staff support. The IDT is in regular communication with

the patient and family to evaluate options and prepare for

transitions in care if needed.

7.3.4 The IDT ensures access to medications, supplies, and equipment

that may be needed.

7.3.5 In all care settings, the IDT provides education and instructions

to family members and/or caregivers in preparation for the

patient’s death, with emphasis on whom to notify, and what to

expect when symptoms change and after the patient dies.

a. Education and instructions are provided in accordance with the

patient- and family’s health literacy levels and cultural preferences.

7.3.6 Family expectations regarding IDT availability during the dying

process are identified in advance so that staff can alleviate

concerns and communicate realistic expectations.

7.3.7 The IDT elicits and honestly addresses hopes, fears, and

expectations about the dying processes in ongoing

communications with the patient and their family in a

developmentally appropriate and culturally sensitive manner.

7.3.8 The IDT provides anticipatory grief support to the family and

caregivers.

Guideline 7.4 Treatment During the Dying

Process and Immediately

After Death

During the dying process, patient and family needs are respected and

supported. Post-death care is delivered in a manner that honors patient and

family cultural and spiritual beliefs, values, and practices.

Criteria:

7.4.1 The IDT communicates signs and symptoms of imminent death

in culturally and developmentally appropriate language, taking

into account the cognitive abilities of the patient and family.

7.4.2 Consistent with commitments to the patient and family, the IDT

is available to provide support during the dying process.

7.4.3 Immediately following death, the IDT either directly or in

collaboration with others, provides respectful care of the body

and support for the family based upon the cultural and spiritual

practices identified by the patient and family. Post-death care is

in accordance with agency practice, local laws, and state

regulations.

7.4.4 An IDT member supports the family before and immediately

following the patient’s death, assisting with cultural or spiritual

practices, funeral arrangements, and cremation or burial

planning.

7.4.5 Medications are disposed of in accordance with Drug

Enforcement Administration (DEA) disposal guidelines, local,

state or federal laws, and agency policies in all care settings. If

the medications are in the home, providers must adhere to the

drug disposal policy of the DEA, paying particular attention to

the role of the health care professional in the home setting.

Guideline 7.5 Bereavement

Bereavement support is available to the family and care team, either

directly or through referral. The IDT identifies or provides resources,

including grief counseling, spiritual support, or peer support, specific to the

assessed needs. Prepared in advance of the patient’s death, the bereavement

care plan is activated after the death of the patient and addresses immediate

and longer-term needs.

Criteria:

7.5.1 The IDT directly, or through referral, provides bereavement

services and support to the family for a minimum of 13 months

after the death of the patient. Bereavement services include:

a. Support, including individual counseling or group support as desired

b. Information and educational resources regarding grief, including the

potential physical manifestations of grief

c. Rituals that acknowledge loss and transition, provide opportunity for

remembrance, and establish a sense of community

7.5.2 The IDT has processes in place outlining specific roles and

responsibilities of IDT members in the provision of

bereavement services, and identifies one IDT member with

bereavement care expertise to help other staff and volunteers

offering bereavement support utilize evidence-based practices.

7.5.3 The IDT refers to the care plan to review issues identified

during the assessment of anticipatory grief (see Domain 3:

Psychological and Psychiatric Aspects of Care), and formulates

and activates a post-death bereavement plan based on a social,

cultural, and spiritual grief assessment.

7.5.4 Either directly or through referral, patients and families at risk

for prolonged grief disorder are identified and provided with

services and support consistent with the assessed need.

7.5.5 Prior to and after death, the IDT works with the family to

identify cultural beliefs and traditions, as well as emotional,

spiritual, and social resources that can provide them with

comfort and support in their grieving process.

7.5.6 Grief and bereavement support and interventions are in

accordance with developmental, cultural, and spiritual needs and

the expectations and preferences of the family.

7.5.7 Grieving children are referred to pediatric grief specialists,

programs, and camps based on their age and needs.

7.5.8 The IDT assesses resiliency, cumulative loss, and grief, and

offers supports and services to IDT members. Emotional support

services are also made available to ancillary team members

involved in supporting palliative care patients.

Clinical and Operational Implications

Clinical Implications

While the IDT may follow patients receiving palliative care from early in

their disease process, additional clinical skills help to identify signs and

symptoms of approaching death. Discussions about, and referral to, hospice

are offered as early as possible. The IDT must assess for fears, address

concerns, provide caregiver training, and support the family through the

dying process and post-death. It is essential that the IDT attends to patient

and family cultural and spiritual beliefs, values, and practices to promote a

peaceful, dignified and respectful death, in all settings of care.

Operational Implications

Caring for patients nearing the end of life may take place in any setting (eg,

hospital, nursing home, assisted living facility, hospice inpatient facility, or

at home). Decisions regarding preference and need for transitions in care

settings may be required. Attention to patient comfort and wishes, as well

as support to family members during the dying process are paramount

operational concerns. Care near the end of life is often more intense than

care earlier in the disease process, requiring increased visit length and

frequency, as well as timely telephone response, to adequately care for

patients and their families. In addition, staffing is needed to support families

during the grief process. Specialist-level pediatric palliative care may be

required when the patient is a minor or when the patient’s immediate family

includes children.

Essential Palliative Care Skills Needed by

All Clinicians

Clinicians in all care settings who learn the hospice eligibility criteria can

make timely referrals to hospice. In addition, clinicians can improve patient

care by learning how to assess and manage physical symptoms common

among patients nearing the end of life. All clinicians must have the

knowledge and skills to talk to patients and families about dying.

Key Research Evidence

The systematic review addressed two key questions: KQ7a) What is the

effect of grief and bereavement programs on family/caregiver outcomes;

and KQ7b) What is the impact of hospice and palliative care in the final

days of life on quality of care and quality of death/dying? Six systematic

reviews were identified pertaining to KQ7a and two pertaining to KQ7b.

The evidence tables in the systematic review describe the key findings of

each included review. The summary of findings table summarizes the

research evidence across identified reviews and describes the quality of

evidence. The complete findings are published online in the Journal of Pain

and Symptom Management (doi: 10.1016/j.jpainsymman.2018.09.008).

Practice Examples

Practice Example D7-A

A large children’s hospital recognized that all units, particularly those

caring for children with a higher risk of death, should provide excellent

palliative care. The perinatal and neonatology teams provide training for all

staff in palliative care, and a team of prenatal/neonatal clinicians, including

social work, physicians, nurses, child life, and chaplaincy, have become the

leaders for this care. This team has developed protocols for symptom

management, and converted a hospital room dedicated to imminently dying

infants to provide privacy and support. A comprehensive perinatal and

pediatric bereavement program provides support to grieving parents,

siblings, and grandparents, including follow-up through the first year after

the baby’s death.

Practice Example D7-B

A large renal dialysis group has several dialysis centers located in urban

and rural settings. They identify that few of their patients are referred to

hospice, and most are dying in acute care settings (often in intensive care).

They receive complaints from families who felt ill-prepared for the sudden

death of their loved one. The dialysis group commits to improving care at

the end of life for their patients and looks to the NCP Guidelines. The

dialysis centers begin with palliative care education for all staff, and

establish a collaborative relationship with an area hospice to develop

educational materials and resources for staff regarding hospice eligibility.

The social workers in the dialysis centers take the lead in implementing a

systematic approach to advance care planning for all dialysis patients, often

facilitating family meetings. This advance care planning initiative identifies

the need for more family- and caregiver support, such as educational

materials and support groups for family members while patients are

receiving dialysis. The dialysis centers in several locations work closely

with area hospice programs to ensure that transitions of care are optimized

for patients who have decided to stop dialysis. As a result of these efforts,

recent audits of patient deaths document better preparation for end of life,

increased hospice utilization, and more patients dying in their preferred

setting.

Practice Example D7-C

A pediatric neurology practice serves a large population of children with

severe neuromuscular diseases and brain tumors. Many of these children

utilize the emergency department in the last month of life, and often die in

the hospital, emergency department or intensive care unit (ICU). Once

hospitalized, the children and families receive support from an inpatient

palliative care service, but at discharge there are few resources available to

them. In consultation with the palliative care service, the neurological

practice recruits an advanced practice registered nurse who is certified in

hospice and palliative care. The nurse works with the inpatient service to

create protocols for symptom management, and improve support for parents

caring for children at home. This leads to a more active collaboration with

home health and home hospice agencies and both agencies commit to

rapidly scaling their capacity to care for pediatric patients, particularly those

with end-of-life needs.

Practice Example D7-D

A well-established hospice program expands into a new region and is

quickly challenged by the cultural beliefs of the population it now serves.

Increasingly, patients and families ask that only their own spiritual leader

provide care, and decline any involvement of the hospice chaplains. Many

male patients decline hands-on care from a female nurse (unless she is

accompanied by a male physician), and likewise decline care from male

physicians and nurses for female patients. Many families request that their

family member be hospitalized as death nears, expressing that death in the

home is not culturally acceptable and marks them unfavorably. The hospice

engages cultural representatives from the community who can help the team

better understand the context for these requests in an effort to meet the

needs of the patients and families. The hospice chaplains create a monthly

interfaith discussion group with community spiritual care leaders, which

gives rise to a community advisory council. The hospice explores ways to

hire a male staff to increase its capacity. Hospice leaders contract with local

nursing homes for beds so that patients do not have to die at home.

Practice Example D7-E

A community-based palliative care program finds a small, but

substantial, percentage of its patients are not willing to access hospice

support when they become eligible. Despite education, support, and

frequent conversations, approximately 15% of the patients and families in

the palliative care program end up waiting until a few days before death to

access hospice. This sets up repeated occurrences of stressful deaths for

both patients and family members, as well as hospice staff. The palliative

care and hospice teams meet to develop a rapid response program for late

admissions in order to work together more seamlessly. They pilot

integrating the hospice social worker and/or chaplain into the palliative care

team for patients who are eligible but decline to use hospice care. They

track outcomes, including time spent on hospice care, and family caregiver

distress and satisfaction with this intervention. They also systematically

meet to debrief short length of stay hospice patients to gather lessons,

identify opportunities for improvement, and support and affirm one another

in the work.

Domain 8: Ethical and Legal Aspects of

Care

The palliative care interdisciplinary team (IDT) applies ethical principles to

the care of patients with serious illness, including honoring patient

preferences, as well as decisions made by legal proxies or surrogate

decision-makers. It is important to note that in all cases surrogates’

obligations are to represent the patient’s preferences or best interests.

Familiarity with local and state laws is needed relating to advance care

planning, decisions regarding life-sustaining treatments, and evolving

treatments with legal ramifications (eg, medical marijuana), especially

when caring for vulnerable populations, such as minors, prisoners, or those

with developmental disability or psychiatric illness.

Guideline 8.1 Global

The core ethical principles of autonomy, substituted judgment,

beneficence, justice, and nonmaleficence underpin the provision of

palliative care.

Criteria:

8.1.1 Palliative care in all care settings is modeled on and consistent

with existing professional codes of ethics, conflicts of interest,

scopes of practice, and standards of care for all relevant

disciplines.

8.1.2 All IDT members have education in the fundamental ethical,

legal, and regulatory principles guiding care of the seriously ill.

8.1.3 Clinicians aim to prevent, identify, and resolve ethical dilemmas

common to the provision of palliative care, such as forgoing or

discontinuing treatments, instituting do not resuscitate (DNR)

orders or other state-specific portable medical orders (eg,

POLST/MOLST), and the use of sedation of the imminently

dying.

8.1.4 Ethical issues are documented, and referrals are made to ethics

consultants or an ethics committee for case consultation and

assistance in decision-making and conflict resolution, as needed.

8.1.5 Ethics consultants or committees guide policy development and

provide staff education in areas, such as:

a. Medically non-beneficial care

b. A patient’s right to decline treatments of any kind

c. Cessation of medically provided nutrition and hydration

d. Foregoing or discontinuing technology (eg, ventilators, dialysis)

e. Use of high-dose medications

f. Sedation of the imminently dying

g. Requests for physician-assisted death

Note: Words bolded in red are defined in the Glossary.

8.1.6 IDT protocols are developed to ensure patient and family access

to ethics resources and support in all care settings.

8.1.7 IDT members maintain professional boundaries, setting clear

role expectations with patients, family members, and caregivers,

balancing objectivity with caring compassion.

8.1.8 Attention is paid to patient and family cultural and spiritual

values that impact care preferences and potentially conflict with

clinicians’ values. The IDT is aware that cultural factors can

influence decision-making and autonomy (see Domain 6:

Cultural Aspects of Care).

8.1.9 Guidance is provided to surrogate decision-makers about the

legal and ethical basis for surrogate decision-making, including

honoring the patient’s known preferences, substituted judgment,

and best-interest criteria.

8.1.10 Social justice principles and costs of care are considered in the

allocation of resources across all populations to improve the

health outcomes of seriously ill people and address healthcare

disparities.

8.1.11 IDTs without ready access to ethics consultation identify

avenues to access consultations and resources (eg, consult with

specialty palliative care experts or establish a collaborative

relationship with a medical center ethics program).

8.1.12 Ensuring IDT sustainability and avoiding clinician burnout is

considered an ethical obligation in all care settings to preserve

team members’ health and ability to remain engaged in

palliative care (see Domain 1: Structure and Processes of Care).

Guideline 8.2 Legal Considerations

The provision of palliative care occurs in accordance with federal, state, and

local regulations and laws, as well as current accepted standards of care and

professional practice.

Criteria:

8.2.1 Clinicians who care for patients with serious illness are

knowledgeable about organizational policies, as well as federal

and state statutes, regulations, and laws regarding:

a. Disclosure of medical records and health information

b. Medical decision-making

c. Advance care planning and advance directives

d. The roles and responsibilities of surrogate decision-makers

e. Guardianship

f. Abuse and neglect

g. Concurrent hospice care provision for pediatric patients

h. Prescribing of controlled substances

i. Death pronouncement and death certification processes

j. Autopsy requests, organ and anatomical donation

k. Emerging issues (eg, medical marijuana, physician aid in dying,

opioid abuse)

8.2.2 The IDT adheres to legal and regulatory requirements for

disclosure, decision-making capacity assessment,

confidentiality, and informed consent.

8.2.3 Attention is paid to the rights of children and adolescents in

decision-making, as well as applicable statutes.

8.2.4 The IDT establishes and implements policies regarding:

a. IDT compliance with state and federal legal and regulatory

requirements regarding patient and family abuse, neglect, suicidal

ideation, self-harm, and potential harm to others

b. Conflicts of interest, including the receipt of gifts from patients,

families, or other care providers

c. Care of and communication about minor patients in state custody,

including involvement of biological, adoptive, or foster families in

decision-making and treatment planning

d. Other emerging issues, as needed

8.2.5 Legal counsel is accessible to advise providers regarding

common palliative care situations including, but not limited to:

a. Determination of capacity to make medical decisions

b. Safety and other considerations for patients without caregivers or

support

c. Patient or family requests for care that is not medically indicated or

may cause undue burden on the patient

d. Withdrawal of technology (eg, ventilators, dialysis, cardiac devices)

e. Cessation of medically provided oral nutrition and hydration

f. Sedation of the imminently dying

g. Requests for physician aid-in-dying

h. Patients who are in custody, on parole, or have other legal issues

impacting their care

i. Children in foster care or protective custody

8.2.6 The IDT recognizes the role of cultural and spiritual factors in

the application of professional obligations, including diagnosis,

disclosure, decisional authority, acceptance of, and decisions to

forgo treatments (see Domain 6: Cultural Aspects of Care).

8.2.7 Patients and families are routinely encouraged to create or

update legal and financial documents, such as wills,

guardianship agreements, and custody documents.

8.2.8 Clinicians are aware of legal guidelines and processes to

determine and document when a patient has no surrogate (ie, the

unbefriended patient), as well as the laws relevant to clinicians

making care decisions for these patients.

Guideline 8.3 Screening and Assessment

The patient’s preferences and goals for medical care are elicited using core

ethical principles and documented.

Criteria:

8.3.1 Clinicians discuss achievable goals of care in the context of

patient values and preferences.

8.3.2 Advance care planning education is provided to the patient and

family to promote communication and understanding of the

patient’s preferences across the care continuum, including

completion of advance directives, such as:

a. Designation of a surrogate health care decision-maker (except for

minors)

b. Living wills

c. Inpatient and out-of-hospital do-not-resuscitate orders and other

portable medical orders

8.3.3 The patient-expressed values, care preferences, spiritual beliefs,

and cultural influences are elicited, routinely reviewed, and

documented, with particular attention to changes in health care

status or transitions of care.

8.3.4 Acknowledging that preferences change over time, the IDT

revisits and updates a patient’s decisions and desires for care

when the clinical status changes. All changes are documented in

the medical record, especially prior to care transitions.

8.3.5 To ensure availability of advance care planning documents,

the IDT uses electronic medical records or advance directive

registries whenever possible. Clinicians ensure that the

treatment plan is concordant with the patient’s evolving goals

across settings.

8.3.6 Patients with disabilities are assumed to have decision-making

capacity unless determined otherwise, according to applicable

laws.

8.3.7 When caring for pediatric patients with serious illness, the child

or adolescents’ views and preferences for medical care,

including assent for treatment (when developmentally

appropriate), are assessed, documented, and given appropriate

weight in decision-making.

8.3.8 For patients who are not developmentally able, or have

cognitive and/or communication impairment or incapacity, and

have not previously expressed their values, preferences, or

beliefs, IDT members follow state laws to identify a default

decision-maker.

8.3.9 Clinicians consider the aspects of patient care that may burden

or have ill effects on family members. The IDT has a

responsibility to identify these difficulties when possible and

within its scope of practice and assist in identifying resources to

meet these needs.

Guideline 8.4 Treatment and Ongoing

Decision-Making

Within the limits of applicable state and federal laws, current accepted

standards of medical care, and professional standards of practice, person-

centered goals form the basis for the plan of care and decisions related to

providing, forgoing, and discontinuing treatments.

Criteria:

8.4.1 The patient’s plan of care reflects ethical principles and the

assessment of treatment preferences. The plan of care is

accurately documented to reflect the patient’s previously stated

goals in terms of providing, forgoing, and discontinuing care.

8.4.2 The IDT ensures that existing treatments align with the patient’s

goals and the standard practices of care, and the team actively

works to prevent medically non-beneficial care.

8.4.3 When a family member or surrogate decision-maker seeks to

override the patient’s documented treatment decisions, the

patient’s preferences are reviewed, and ethics consultation is

sought if needed.

8.4.4 Failure to honor patient preferences is considered an ethical

concern and is addressed by the IDT.

8.4.5 Children receive open and honest, developmentally appropriate

information about their serious illness and treatment options,

and are given the opportunity to participate in decision-making

according to their wishes, age, and developmental capacity.

When the child’s wishes differ from those of the adult decision-

maker, staff is available to assist the child and family work

towards a resolution, prioritizing fidelity to the patient.

8.4.6 When parents or legal decision-makers express a strong

preference for non-disclosure of a poor prognosis to a seriously

ill child or adolescent, the IDT assesses family motivations and

values regarding truth-telling practices and preferences. While it

is sometimes ethically permissible to defer to family values

regarding nondisclosure of prognosis, clinicians work

collaboratively with the family to meet the child or adolescent’s

individual needs while respecting the parent or decision-makers’

expectations and boundaries.

8.4.7 All treatments provided are directed at the relief of suffering, in

accordance with the doctrine of double effect.

8.4.8 The IDT educates the patient and family regarding the cost of

care and financial burdens associated with treatment options.

8.4.9 In cases where the wishes of the patient (or patient preferences

expressed by the surrogate) conflict with the clinicians caring

for the patient, processes are in place to honor clinician

conscientious objection in a manner that ensures patients are

never abandoned and continue to receive quality, safe care.

8.4.10 When treatments are forgone or discontinued, the IDT ensures

appropriate symptom control at all times, as aligned with the

ethical principle of nonmaleficence.

Clinical and Operational Implications

Clinical Implications

Ethical and legal principles are inherent to the provision of palliative care to

patients with serious illness, including principles of self-determination,

beneficence, nonmaleficence, and justice. Clinicians caring for seriously ill

patients understand ethical principles underlying health care delivery in the

context of their own professional practice setting and discipline, as well as

the laws and statues governing health care. In all contexts, the IDT provides

attention to moral agency and emphasis on collaborative practice. The IDT

works to recognize and be mindful of its own values and beliefs when

facilitating informed decision-making, and participating in ethical dilemma

resolution. As the team works to maintain relationships with the patient and

family, it also recognizes the importance of maintaining professional

boundaries across all settings and contexts, regardless of patient age.

Operational Implications

Clinicians caring for seriously ill patients have access to legal and ethical

experts for consultation to deliver high-quality palliative care regardless of

setting or location of care. Conference calls and video-conferencing

provides access to experts in all care settings.

Essential Palliative Care Skills Needed by

All Clinicians

Many clinicians have studied medical ethics and understand the ethical

principles most applicable at the end of life. All clinicians working with

seriously ill patients benefit from learning about advance care planning and

common scenarios that cause ethical and legal conflicts. In addition, all

clinicians know how to access legal experts, ethicists, or ethics committees,

as well as specialist-level palliative care teams, to ensure the provision of

high-quality care in alignment with patient goals.

Key Research Evidence

The systematic review addressed the following key question: KQ8) What is

the impact of advance care planning on substituted decision-making

regarding life-sustaining treatments? Thirty-six systematic reviews were

identified pertaining to KQ8. The evidence table in the systematic review

describes the key findings of each included review. The summary of

findings table summarizes the research evidence across identified reviews

and describes the quality of evidence. The complete findings are published

online in the Journal of Pain and Symptom Management (doi:

10.1016/j.jpainsymman.2018.09.008).

Practice Examples

Practice Example D8-A

A long-term care setting is incorporating palliative care for patients in its

day center, residential care, and long-term care programs. A physician

assistant and social worker lead efforts to improve advance care planning

and completion of formal directives. Varying levels of decision-making

capacity pose a challenge to completing advance directives, and staff need

help determining capacity. The facility develops a consultative relationship

with a hospital-based palliative care team and ethics consult service for

education on determination of capacity and help with challenging scenarios.

Practice Example D8-B

A community hospice regularly cares for patients who are discharged from

the tertiary hospital. A number of these patients come to hospice without

clear directives, often without clear understanding of their condition,

prognosis, and what to expect in the future, sometimes leading to their

continued desire for attempts at cardiopulmonary resuscitation at the time

of death. Hospice staff are stressed by these situations and accuse the

hospital teams of failing to get these patients and families “on the hospice

page.” The groups meet to identify ways they can better manage care

transitions for patients and families in general, and especially for patients

without a do-not-resuscitate order. The hospice liaison begins to talk daily

with the palliative care team to discuss ways to meet the needs of patients.

This brings valuable context and history to patients’ care plans as they

transition to hospice. The hospice team has a deeper appreciation for what

the palliative team has done, and what patients are able (or unable) to

understand and retain despite communication, and the palliative team is

better equipped to communicate to the hospice team the patient’s level of

understanding and preparation for hospice care.

Practice Example D8-C

A large, multi-site health system has reviewed its patient and family

satisfaction reports, as well as staff surveys, to plan new initiatives. Staff

surveys reveal feelings of inadequacy in how to best care for lesbian, gay,

bisexual, transgender, queer, intersex, asexual (LGBTQIA) patients and

their families. In some cases, staff voice distress in providing hands-on care

for these patients, particularly when they are transgender. Staff members

also highlight the challenges in navigating family conflicts, such as when

the biological family is in overt conflict with the LGBTQIA partners or

spouses. Some family members have also reported high levels of

dissatisfaction at the time of death, and instances in which patients’ wishes

were disregarded, partners/spouses were not notified of a change in patient

status, or were excluded from family conferences despite clear patient

directives about their wishes to have their partner/spouse involved. The

health system addresses this gap in patient-centered care, asking for

involvement from the palliative care service and ethics committee. The

Human Resources Department Cultural Diversity committee, which had

previously focused only on issues of ethnicity and race, has asked a local

LGBTQIA center for consultation, education, and resources to effectively

address the issues identified.

Practice Example D8-D

A rural palliative care program provides care in patients’ homes across a

large geographic area. The staff is often alone on these visits and sometimes

do not see other team members for several days at a time. Team members

express stress with some of the ethical issues they confront, particularly

when patients have impaired decision-making, when they receive requests

for physician aid-in-dying, and when there are family conflicts. The

program develops an ethics forum for education, discussion of challenging

cases, and identification of practical measures for support. The forum is

hosted online, so staff can either listen in or see each other via the computer.

The program provides educational podcasts for team members. Leadership

facilitates dual visits of the practitioners and social workers to help with

challenging cases, and facilitate greater professional and team support.

Practice Example D8-E

A hospital-based pediatric palliative care team was approached by

members of the pediatric intensive care unit (PICU) care team, who

expressed that they were often uncomfortable with the ethical and legal

implications of withdrawal of life-sustaining therapies. The PICU care team

did not feel that issues including decision-making capacity of the patient,

disclosures to the child, staff moral distress, and sedation of the imminently

dying were consistently addressed prior to withdrawing the therapies. A

multidisciplinary group, including members of the children’s hospital Ethics

Committee, was convened to initiate the standardization of the withdrawal

of life-sustaining therapies process that included addressing potential legal

and ethical issues. The process included structured huddles, or team

discussions, using a new withdrawal of life-sustaining therapies checklist to

document decision-making in the medical record in real time. The checklist

of items to be addressed included ensuring presence of child life,

chaplaincy and social work, anticipatory symptom management strategies,

confirmation with medical decision-maker and, if appropriate, the patient.

Following these interventions, staff reported improvement in team

communication and reduction of distress surrounding withdrawal of life-

sustaining therapies.

Practice Example D8-F

A community pediatric palliative care team routinely assesses parental

and child/adolescent preferences regarding goals of care, working to meet

each family’s individualized communication and decision-making needs. A

teen with advanced cancer disclosed to the team that he no longer wanted

chemotherapy and was ready to die, but he did not want to disappoint or

anger his parents. The palliative care team acknowledged the teen’s honest

expression of his wishes and provided support. With his permission, the

team coordinated goals of care discussions with the parents separately, and

subsequently with the parents and teen together. The palliative team also

drew upon the expertise of their child life specialist, the teen’s oncology

team at the hospital, along with the hospital’s pediatric ethics committee to

facilitate a new plan that honored all family members’ needs.

Appendix I: Glossary

Acculturation: “…the process of cultural and psychological change that

results following meeting between cultures.”1

Activities of daily living (ADLs; also see “Instrumental activities of

daily living”): “…are activities related to personal care. They include

bathing or showering, dressing, getting in and out of bed or a chair,

walking, using the toilet, and eating.”2

Advanced practice providers: Defined in the NCP Guidelines as physician

assistants and advanced practice registered nurses utilized to expand the

capacity of palliative care interdisciplinary teams to deliver complex

care and provide direct care.

Advance care planning documents: “…allow individuals to share their

treatment preferences in the event they can no longer speak for

themselves.” There are two kinds: legal documents and medical orders

(eg, legal: living wills, health care surrogate; medical: do not resuscitate

(DNR) orders, physician orders for life-sustaining treatment (POLST)).3

Anticipatory grief: “…a complex concept that encompasses grief in

anticipation of the future loss of a loved one, in addition to previously

experienced and current losses as a result of the terminal illness.”4

Autonomy: “The principle of respect for autonomy is usually associated

with allowing or enabling patients to make their own decisions about

which health care interventions they will or will not receive.”5

Beneficence: “The ethical principle of beneficence requires healthcare

professionals to treat their patients in a way that provides maximum

benefit to that patient.”6

Bereavement: “The process of grieving and letting go of a loved one who

has died.”7

Capacity: See “Decision-making capacity.”

Care coordination: “Care coordination is the deliberate organization of

patient care activities between two or more participants (including the

patient) involved in a patient’s care to facilitate the appropriate delivery

of health care services. Organizing care involves the marshalling of

personnel and other resources needed to carry out all required patient

care activities and is often managed by the exchange of information

among participants responsible for different aspects of care.”8 9

Care plan: In palliative care, the interdisciplinary team develops the care

plan, with input from all health and social support providers. The care

plan is based on the patient’s goals of care, as well as information

gathered via the comprehensive assessments. The services and support

needed to achieve those goals and reduce suffering are described,

including plans to monitor and adjust the plan based on subsequent

patient and family assessments.

Care transitions: “The term care transition describes a continuous process

in which a patient’s care shifts from being provided in one setting of

care to another, such as from a hospital to a patient’s home or to a

skilled nursing facility and sometimes back to the hospital.”10 In

addition, care transitions occur when patients change care providers.

Note: Words bolded in red are defined in this Appendix.

Caregiver assessment: “Caregiver assessment is a systematic process of

gathering information about a caregiving situation to identify the

specific problems, needs, strengths, and resources of the family

caregiver, as well as the caregiver’s ability to contribute to the needs of

the care recipient.”11

Clinician: In the context of the NCP Guidelines, clinician refers to any

health professional providing direct care to seriously ill person sand

their families, whether primary care practitioners, specialist consultants,

or specialist-level palliative care teams. While any clinician can apply

palliative care principles and practices, specialist palliative care teams

are interdisciplinary, and the team members have certification or

specialty-level competency to provide specialist palliative care.

Cognitive impairment: “Cognitive impairment is when a person has

trouble remembering, learning new things, concentrating, or making

decisions that affect their everyday life. Cognitive impairment ranges

from mild to severe. With mild impairment, people may begin to notice

changes in cognitive functions, but still be able to do their everyday

activities. Severe levels of impairment can lead to losing the ability to

understand the meaning or importance of something and the ability to

talk or write, resulting in the inability to live independently.”12

Communication: In palliative care, “promoting and facilitating open

communication to foster patient- and family-centered shared decision-

making, and advance care planning is essential. Ethnic and cultural

differences should be acknowledged. Family members’ decision-

making strategies around options of care, location, and preferences

should take into account cultural, ethnic, and religious preferences. The

earlier these discussions can occur, the better, so when there are

unexpected changes in a patient’s condition, discussions have already

happened, and decisions have been made.”13

Comprehensive assessment: “Rather than gathering information

exclusively from the patient (or caregivers) and medical records,

palliative evaluation utilizes a broad range of sources, each contributing

to the final assessment. In an interdisciplinary manner, the physician

collaborates with nursing staff, chaplains, social workers, therapists, and

nutritionists to perform discipline-specific evaluative tasks, together

developing the comprehensive palliative assessment. Tasks that are best

shared with expert nonphysician team members may include evaluation

of existential and spiritual domains, economic needs, and care

coordination; however, specific distribution will vary depending on

local expertise.”14

Continuous quality improvement (CQI): uses an “‘iterative approach that

aims to reduce and eventually eliminate ‘unexplained clinical variation.’

Reducing such variation addresses the root of many of health care’s

inefficiencies, excess costs, and poor outcomes. CQI calls for a cultural

shift that relies on clinicians constantly asking themselves, ‘How could

this process be better?’ and ‘How can I impact this change?’ The

underpinnings of this approach view each clinician as an informed agent

who can identify bad processes and implement changes. It views

medical errors and inefficiencies as results, not of bad people, but of

suboptimal processes of care. CQI also recognizes that heterogeneity in

patient characteristics, values, and clinical settings dictates that prudent

decision-making formulated to reduce unnecessary clinical variation

does not mean that 100% of care may meet a quality measure.”15

Cultural humility: “In a multicultural world where power imbalances

exist, cultural humility is a process of openness, self-awareness, being

egoless, and incorporating self-reflection and critique after willingly

interacting with diverse individuals. The results of achieving cultural

humility are mutual empowerment, respect, partnerships, optimal care,

and lifelong learning.”16

Decision-making capacity: “Medical decision-making capacity refers to

the time-sensitive determination of a patient’s ability to make a specific

clinical choice.” 17 Thoughtful assessment of capacity is essential for

providing care that preserves and respects a patient’s autonomy, while

meeting the ethical and legal standards of informed consent.

Developmentally appropriate: Providers of palliative care seek to provide

developmentally appropriate care to all people living with a serious

illness. Such care “incorporates advanced decision making based on

young adult cognitive abilities, acknowledges and treats the high

symptom burden, promotes this time of psychological and spiritual

growth, and ultimately, empowers and honors this special time of life.”18

Doctrine of double effect: “…draws a distinction between impermissible

intended consequences and permissible (merely) foreseen

consequences.” There are four conditions that are applied: 1) “the action

itself (as distinct from its consequences or effects) must not be

inherently morally wrong,” 2) “the intention must be to produce the

good effect,” 3)“the good effect must not be brought about via the bad

effect,” 4) “…there is an appropriate balance (ie, proportionality)

between the good and the bad effects, such that the good effect must

outweigh the bad.”19

Existential: Existential refers to a philosophical approach in which one’s

primary task is to find what determines one’s own level of meaning in

life. Often this may involve an anguished process where prior beliefs no

longer seem valid, and one begins a journey to find one’s own meaning

in life. Meaning is often conceived in a way that is personal and

acknowledges that others may hold other quite different meanings. At

the end of life, terminally ill individuals may expand their curiosity in

the hope that this will lead to new self-discovery. This often takes an

individual through a process of uncertainty and ambiguity that includes

the re-examination of prior understandings to determine what one holds

for the self to be true.20

Family: The patient defines who constitutes their family and “determine

how they will participate in care and decision-making.”21

Family caregiver: “A family caregiver is someone who is responsible for

attending to the daily needs of another person. Family caregivers are

responsible for the physical, emotional and often financial support of

another person who is unable to care for him/herself due to illness,

injury or disability. The care recipient may be a family member, life

partner or friend.”22

Gender expression: “The way individuals express or present to others their

internal sense of masculinity or femininity.”23

Gender identity: “One’s innermost concept of self as male, female, a blend

of both or neither – how individuals perceive themselves and what they

call themselves. One’s gender identity can be the same or different from

their sex assigned at birth.”24

Grief: “The emotional, cognitive, functional and behavioral responses to

the death. Also, grief is often used more broadly to refer to the response

to other kinds of loss; people grieve the loss of their youth, of

opportunities, and of functional abilities.”25

Health care surrogate (health care proxy, health care agent): A health

care surrogate is someone appointed to make health care decisions when

the patient is unable to make or communicate decisions. The surrogate

can be appointed by the patient via an advance directive, or serve as a

court-appointed guardian. If the health care providers are unable to

locate a decision-maker, a decision-maker may be appointed in

accordance with state laws.

Historical trauma: The “cumulative emotional and psychological

wounding across generations, including the lifespan, which emanates

from massive group trauma; the historical trauma response is the

constellation of features in reaction to this trauma…includes depression

self-destructive behavior, suicidal thoughts and gestures, anxiety, low

self-esteem, anger, and difficulty recognizing and expressing

emotions.”26

Hospice: “Considered to be the model for quality, compassionate care for

people facing a life-limiting illness or injury, hospice care involves a

team-oriented approach to expert medical care, pain management, and

emotional and spiritual support expressly tailored to the patient’s needs

and wishes. Support is provided to the patient’s loved ones as well.”

“Hospice focuses on caring, not curing and in most cases care is

provided in the patient’s home. Hospice care also is provided in

freestanding hospice centers, hospitals, and nursing homes and other

long-term care facilities. Hospice services are available to patients of

any age, religion, race, or illness. Hospice care is covered under

Medicare, Medicaid, most private insurance plans, HMOs, and other

managed care organizations.”27

Instrumental activities of daily living (IADLs; see also “Activities of

daily living”): “Instrumental Activities of Daily Living (IADLs) are

activities related to independent living. They include preparing meals,

managing money, shopping for groceries or personal items, performing

light or heavy housework, and using a telephone.”28

Interdisciplinary team: “The interdisciplinary model is based on

synergistic and interdependent interaction of team members who each

possess particular expertise. Team members work closely together,

actively communicating and sharing information. Leadership is often

task-dependent, defined by each situation. Collaboration is identified as

the process central to the interactions between members.”29

Intersections of race (Intersectionality): “A way of understanding and

analyzing the complexity in the world, in people, and in human events

and conditions of social and political life and the self can seldom be

understood as shaped by one factor. They are generally shaped by many

factors in diverse and mutually influencing ways. When it comes to

social inequality, people’s lives and the organization of power in a given

society are better understood as being shaped not by a single axis of

social division, be it race or gender or class, but by many axis that work

together and influence each other.”30

Long-term services and supports (LTSS): “…encompasses the broad

range of paid and unpaid medical and personal care assistance that

people may need – for several weeks, months, or years – when they

experience difficulty completing self-care tasks as a result of aging,

chronic illness, or disability.”31

Non-beneficial care: “A treatment determined on the basis of current

medical knowledge and experience to hold no reasonable promise for

contributing to the patient’s well-being or of achieving agreed-on goals

of care.”32

Nonmaleficence: “Obligation not to inflict harm intentionally.”33

Palliative care: Palliative care focuses on expert assessment and

management of pain and other symptoms, assessment and support of

caregiver needs, and coordination of care. Palliative care attends to the

physical, functional, psychological, practical, and spiritual

consequences of a serious illness. It is a person- and family-centered

approach to care, providing seriously ill people relief from the

symptoms and stress of an illness. Through early integration into the

care plan of seriously ill people, palliative care improves quality of life

for both the patient and the family.

Palliative care interdisciplinary team (IDT): Specialty palliative care

interdisciplinary teams collaborate with other care providers to directly

provide and coordinate care. Depending on the care needs of each

patient and family, the IDT can expand to include other clinicians and

community service providers. All team members are responsible to

screen for unmet needs outside of their scope and access team members

with expertise for full assessments. (See Domain 1: Structures and

Processes for Care for a list of palliative care interdisciplinary team

disciplines.)

Palliative care specialists: Palliative care specialists include “physicians

who are board certified in this specialty; palliative-certified nurses; and

palliative care-certified social workers, pharmacists, and chaplains.”34

Primary palliative care (also known as generalist): “Palliative care that is

delivered by health care professionals who are not palliative care

specialists, such as primary care clinicians; physicians who are disease-

oriented specialists (such as oncologists and cardiologists); and nurses,

social workers, pharmacists, chaplains, and others who care for this

population but are not certified in palliative care.”35

Professional chaplain: The professional chaplain is master’s level prepared

and has participated in clinical chaplaincy training. Board Certification

in chaplaincy is preferred. Certified chaplains may also specialize in

palliative care and have specialized certification. The chaplain is the

spiritual care specialist on the interdisciplinary team, and is trained to

address spiritual and religious concerns of all patients and caregivers,

regardless of their spiritual or religious beliefs and practices. The

chaplain is also an emotional care generalist, and interfaces closely with

the social worker and other mental health providers to provide

psychosocial-spiritual care as a unified domain.

Psychological/psychiatric: “The psychosocial implications of disease

progression result in a range of challenges for both the patient and the

caregiver. The consequences of advanced disease can comprise

emotional states such as anxiety, distress and depressive episodes, fear

of being a burden to others, loss of control, anger, loss of sense of

dignity, uncertainty, and changes in close relationships and social roles.

Adjustment disorder, anxiety disorder, depressive disorder, and the

demoralization syndrome represent common disorders and phenomena

among patients with advanced cancer. Moreover, uncontrollable pain

and high unrelieved physical symptom burden, depression, feelings of

helplessness and hopelessness, delirium, and low family support are

major factors in the desire for thoughts of suicide and the desire for

hastened death. Caregivers play an important and challenging role,

providing emotional and social support for the patient, helping with

medical needs, and meeting increasingly complex instrumental needs

such as running the household and work.”36

The psychiatric syndromes that may manifest for a patient and/or family

member during a serious or life-threatening illness include depression,

anxiety, and delirium. Patients and family members may already be

diagnosed with a mental health disorder, which could include any listed

in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V).

Psychiatric conditions can be challenging for palliative care staff to

differentiate from the serious illness because symptoms may intersect

with those of the medical conditions. Psychiatry can assist in these

situations, as well in the use of psychotropic medications.37

Religion: “…involves beliefs, practices, and rituals related to the sacred.

Religion may also involve beliefs about spirits, both good (angels) and

bad (demons). Religion may be organized and practiced within a

community, or it may be practiced alone and in private. In either case,

religion originates in an established tradition that arises out of a

community with common beliefs and practices.”38

Serious illness: Serious illness is defined as a “health condition that carries

a high risk of mortality and either negatively impacts a person’s daily

function or quality of life or excessively strains their caregiver.”39

Shared decision-making: “At its core, shared decision making is an

interpersonal, interdependent process in which the health care provider

and the patient relate to and influence each other as they collaborate in

making decisions about the patient’s health care.”

“Three essential elements must be present for shared decision making to

occur. First, both the health care provider and the patient must recognize

and acknowledge that a decision is, in fact, required. Second, they must

both know and understand the best available evidence concerning the

risks and benefits of each option. Third, decisions must take into

account both the provider’s guidance and the patient’s values and

preferences.”40

Social determinants of health: “The social determinants of health are the

conditions in which people are born, grow, live, work, and age. These

circumstances are shaped by the distribution of money, power and

resources at global, national and local levels. The social determinants of

health are mostly responsible for health inequities - the unfair and

avoidable differences in health status seen within and between

countries.”41

Specialist palliative care: Specialist palliative care is the active, total care

of patients with serious illness and their families. Care is provided by an

interdisciplinary team whose members have undergone recognized

specialist palliative care training.

Spirituality: Spirituality is recognized as a fundamental aspect of

compassionate, patient and family-centered care. “Spirituality is the

aspect of humanity that refers to the way individuals seek and express

meaning and purpose and the way they experience their connectedness

to the moment, to self, to others, to nature, and to the significant or

sacred.”42

Spiritual assessment: “Formal spiritual assessment refers to a more

extensive process of active listening to a patient’s story conducted by a

board-certified chaplain that summarizes the needs and resources that

emerge in that process. The chaplain’s summary should include a

spiritual care plan with expected outcomes that is then communicated to

the rest of the treatment team. Unlike history taking, the major models

for spiritual assessment are not built on a set of questions that can be

used in an interview. Rather, the models are interpretive frameworks

that are based on listening to the patient’s story as it unfolds. Because of

the complex nature of these assessments and the special clinical training

necessary to engage in them, this assessment should be done only by a

board-certified chaplain or an equivalently prepared spiritual care

provider.”43

Spiritual distress: “…a state of suffering related to the impaired ability to

experience meaning in life through connectedness with self, others,

world or a Superior Being. This definition contains the attributes of

spiritual distress: suffering, impaired spirituality, contrary to spiritual

well- being, and related to meaning in life.”44

Spiritual history: “…history-taking uses a broader set of questions to

capture salient information about needs, hopes, and resources. The

history questions are asked in the context of a comprehensive

examination by the clinician who is responsible for providing direct

care or referrals to specialists. The information from the history permits

the clinician to understand how spiritual concerns could either

complement or complicate the patient’s overall care. It also allows the

clinician to incorporate spiritual care into the patient’s overall care plan.

Unlike spiritual screening, which requires only brief training, those

doing a spiritual history should have some education in and comfort

with issues that may emerge and knowledge of how to engage patients

comfortably in this discussion.”45

Spiritual screening: “Spiritual screening or triage is a quick determination

of whether a person is experiencing a serious spiritual crisis and

therefore needs an immediate referral to a board-certified chaplain.

Spiritual screening helps identify which patients may benefit from an

in-depth spiritual assessment. Good models of spiritual screening use a

few simple questions that can be asked in the course of an overall

patient and family screening. Examples of such questions include, ‘Are

spirituality or religion important in your life?’ and ‘How well are those

resources working for you at this time?’”46

Substituted judgement: Substituted judgement refers to the ethical duty of

guardians and surrogate decision-makers to make an effort to

understand the patient’s beliefs and values prior to making decisions on

the patient’s behalf.

Total pain: A holistic experience that extends beyond the physiological

domain and was first introduced by Dame Cicely Saunders in the 1960s.

Total pain recognizes the holistic nature of pain and the interplay of

psychological and social well-being, spirituality, and culture. Symptoms

rarely occur in isolation; rather, they cluster with other symptoms and

are influenced by the psychological, social, and cultural characteristics

of the individual.47

Endnotes

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Appendix II: Tools and Resources

Domain 1: Structure and Processes of Care

• American Academy of Hospice and Palliative Medicine − Quality

Initiatives: Links to resources on quality improvement, Measuring

What Matters and other quality initiatives.

http://aahpm.org/education/quality

• California Health Care Foundation − Community-based Palliative

Care Resource Center: This online resource center provides strategies

and support for organizations that are planning, implementing, or

enhancing a community-based palliative care (CBPC) program.

http://www.chcf.org/projects/2015/cbpc-resource-center

• California State University Institute for Palliative Care − National

Resources: Links to national resources for palliative care programs,

on a variety of topics including ACP, special populations,

bereavement, hospice and more.

https://csupalliativecare.org/resources/

• Center to Advance Palliative Care – Host to the National Palliative

Care Registry and other resources to help programs learn about

measures and metrics to improve patient and family care.

https://www.capc.org/topics/metrics-and-measurement-palliative-

care/

• Dy SM, Kiley SB, Ast K, Lupu D, Norton SA, McMillan SC, Herr K,

Rotella JD, Casarett DJ. Measuring What Matters: Top-Ranked

Quality Indicators for Hospice and Palliative Care from the American

Academy of Hospice and Palliative Medicine and Hospice and

Palliative Nurses Association. J Pain Symptom Manage.

2015;49(4):773-781. doi:10.1016/j.jpainsymman.2015.01.012.

• Institute for Healthcare Improvement − Plan-Do-Study-Act (PDSA)

Worksheet

http://www.ihi.org/resources/Pages/Tools/PlanDoStudyActWorksheet

.aspx

• National Hospice and Palliative Care Organization − Quality

Resource Center: Tools to assess and monitor the quality of care and

services hospices provide. https://www.nhpco.org/quality

• National Palliative Care Research Center − Measurement and

Evaluation Tools: Links to a selection of tools for assessing pain and

assessing and tracking the level of symptoms (some are patient

reported). http://www.npcrc.org/content/25/Measurement-and-

Evaluation-Tools.aspx

• National POLST Paradigm − Appropriate POLST Form Use Policy:

http://polst.org/appropriate-use-pdf

• Patient Care Quality Network – Templates and resources to improve

quality care: https://www.pcqn.org/

Pediatrics:

• Chrastek J. Pediatric palliative care in the community. In Dahlin, C.,

Coyne, P. J., & Ferrell, B. R. (Eds.). Advanced practice palliative

nursing. New York, NY: Oxford University Press, 587-596;2016.

• Widger K, Sutradhar R, Rapoport A, Vadeboncoer C, Zelcer S,

Kassam A., …, & Gupta S. Predictors of specialized pediatric

palliative care involvement and impact on patterns of end-of-life care

in children with cancer. J Clin Oncol, 2018: Jan 22, e-pub ahead of

print. doi:10.1200/JCO.2017.75.6312.

• Davis KG. Integrating palliative care into the school and community.

Pediatric Clinics of North America, 2016;63(5):899-911.

• Kaye EC, Rubenstein J, Levine D, Baker JN, Dabbs D, & Friebert

SE. Pediatric palliative care in the community. CA Cancer J Clin,

2018;65(4):316-333.

• NHPCO’s Standards for Pediatric Care:

https://www.nhpco.org/quality/nhpco%E2%80%99s-standards-

pediatric-care

Domain 2: Physical Aspects of Care

National Comprehensive Cancer Network Guidelines for Palliative Care,

Management of Cancer Pain, Distress Management

https://www.nccn.org/professionals/physician_gls/pdf/distress.pdf

Symptom Assessment Tools:

• Edmonton Symptom Assessment:

http://www.npcrc.org/files/news/edmonton_symptom_assessment_sc

ale.pdf

• Memorial Symptom Assessment Scale:

http://www.npcrc.org/files/news/memorial_symptom_assessment_sca

le.pdf

• Brief Pain Inventory Long Form:

http://www.npcrc.org/files/news/briefpain_long.pdf

• Brief Pain Inventory Short Form:

http://www.npcrc.org/files/news/briefpain_short.pdf

• Brief Fatigue Inventory:

http://www.npcrc.org/files/news/brief_fatigue_inventory.pdf

•  McGill Pain Inventory Short Form:
http://www.npcrc.org/files/news/mcgill_pain_inventory.pdf
•  Palliative Care Outcome Score (POS): https://pos-pal.org/
•  MD Anderson Brief Symptom Inventory:
https://www.mdanderson.org/research/departments-labs-
institutes/departments-divisions/symptom-research/symptom-
assessment-tools/md-anderson-symptom-inventory.html
•  NCCN Distress Thermometer:
https://www.nccn.org/about/permissions/thermometer.aspx
•  Confusion Assessment Method:
https://www.medscape.com/viewarticle/481726
•  Patient Health Questionnaire (PHQ-9):
http://www.phqscreeners.com/sites/g/files/g10016261/f/201412/PHQ
-9_English.pdf
•  Patient Health Questionnaire (PHQ-2):
http://www.cqaimh.org/pdf/tool_phq2.pdf
•  PainAD Scale: https://www.mdcalc.com/pain-assessment-advanced-
dementia-scale-painad
•  Wong-Baker Faces Pain Rating Scale:
http://www.npcrc.org/files/news/wong_baker_FACES_pain_rating_sc
ale.pdf
•  Tools to Assess Self Administration of Medication:
https://www.pharmacy.umaryland.edu/practice/medmanagement/assis
ted_living/Tools-to-Assess-Self-Administration-of-Medication/
Performance/Functional Status Assessment Tools:

• Palliative Performance Scale:

http://www.npcrc.org/files/news/palliative_performance_scale_PPSv

2.pdf

• Karnofsky Performance Scale:

http://www.npcrc.org/files/news/karnofsky_performance_scale.pdf

• ECOG Performance Status:

http://www.npcrc.org/files/news/ECOG_performance_status.pdf

Pediatric Symptom Assessment Tools:

• Malviya S, Voepel-Lewis T, Burke C. The revised FLACC

observational pain tool: Improved reliability and validity for pain

assessment in children with cognitive impairment. Pediatr Anesth,

2006;16(3):258-265. Available at:

http://prc.coh.org/PainNOA/Flacc_Tool.pdf

• Solodiuk J & Curley MAQ. Pain assessment in nonverbal children

with severe cognitive impairments: The individualized numeric rating

scale (INRS). J Pediatr Nurs,2003;18(4):295-299.

• Collins JJ, Devine TD, Dick GS, et al. The measurement of

symptoms in young children with cancer: the validation of the

Memorial Symptom Assessment Scale in children aged 7-12. J Pain

Symptom Manage, 2002;23(1):10-16.

• Krechel SW, Bildner J. CRIES: A new neonatal postoperative pain

measurement score: initial testing of validity and reliability. Pediatr

Anesth,1995;5:53-61.

• Lawrence J, Alcock D, McGrath P, Kay J, MacMurray SB, Dulberg

C. The development of a tool to assess neonatal pain. Neonatal Net,

1993;12(6):59-66.

• Hummel P, Puchalski M, Creech SD, Weiss MGl. Clinical reliability

and validity of the N-PASS: Neonatal pain, agitation and sedation

scale with prolonged pain. J Perinatol, 2008;28(1): 55-60. Available

at: http://www.anestesiarianimazione.com/2004/06c.asp

• Stevens B, Johnston C, Petryshen P, et al. Premature Infant Pain

Profile: Development and initial validation. Clin J Pain,

1996;12(1):13-22.

• Lansky Play-Performance Scale for Pediatrics:

http://micmrc.org/system/files/Lansky%20Scale.pdf

• Fatigue Assessment: Crichton A, Knight S, Oakley E, Babl FE,

Anderson V. Fatigue in child chronic health conditions: A systematic

review of assessment instruments. Pediatrics, 2015;135(4):e1015-

e1031.

• Collins JJ, Berde CB, Frost JA. Pain Assessment and management. In

Wolfe, J., Hinds, P. S., & Sourkes, B. M. (Eds.). The textbook of

interdisciplinary pediatric palliative care. Philadelphia, PA: Elsevier

Saunders, 284-299;2011.

• Davies D. Respiratory symptoms. In Wolfe, J., Hinds, P. S., &

Sourkes, B. M. (Eds.). The textbook of interdisciplinary pediatric

palliative care. Philadelphia, PA: Elsevier Saunders, 300-310;2011.

• Friedrichsdorf SJ, Drake R, Webster ML. Gastrointestinal symptoms.

In Wolfe, J., Hinds, P. S., & Sourkes, B. M. (Eds.). The textbook of

interdisciplinary pediatric palliative care. Philadelphia, PA: Elsevier

Saunders, 311-334;2011.

• Goldsmith M, Ortiz-Rubio P, Staveski, S, Chan M, Shaw RJ.

Delirium. In Wolfe, J., Hinds, P. S., & Sourkes, B. M. (Eds.). The

textbook of interdisciplinary pediatric palliative care. Philadelphia,

PA: Elsevier Saunders, 251-265;2011.

• Hain R, Douglas H. Neurological symptoms. In Wolfe, J., Hinds, P.

S., & Sourkes, B. M. (Eds.). The textbook of interdisciplinary

pediatric palliative care. Philadelphia, PA: Elsevier Saunders, 239-

250;2011.

• Haskamp, AC, Lafond DA. Pediatric oncology. In Dahlin, C., Coyne,

P. J., & Ferrell, B. R. (Eds.). Advanced practice palliative nursing.

New York, NY: Oxford University Press, 575-586;2016. **Includes

symptom management

• Hellsten MB, Stephens K, Sanborn S. Pediatric pain and symptom

management. In Kobler, K., & Limbo, R. (Eds.). Conversations in

perinatal, neonatal, and pediatric palliative care. Pittsburgh, PA:

Hospice and Palliative Nurses Association, 58-62;2017.

• Herbert A, Seton C, Gamble A. Sleep and insomnia. In Wolfe, J.,

Hinds, P. S., & Sourkes, B. M. (Eds.). The textbook of

interdisciplinary pediatric palliative care. Philadelphia, PA: Elsevier

Saunders, 272-283;2011.

• Hesselgrave J, Hockenberry M. Fatigue. In Wolfe, J., Hinds, P. S., &

Sourkes, B. M. (Eds.). The textbook of interdisciplinary pediatric

palliative care. Philadelphia, PA: Elsevier Saunders, 266-271;2011.

• Holley LM, Kometiani MK, Friebert S. Expressive therapy and

complementary approaches in palliative care. In Kobler, K., &

Limbo, R. (Eds.). Conversations in perinatal, neonatal, and pediatric

palliative care. Pittsburgh, PA: Hospice and Palliative Nurses

Association, 87-108;2017.

• Puchalski ML, Johnson, TS. Infant pain. In Kobler, K., & Limbo, R.

(Eds.). Conversations in perinatal, neonatal, and pediatric palliative

care. Pittsburgh, PA: Hospice and Palliative Nurses Association, 63-

8;2017.

• Pieper L, Zernikow B, Drake R, Frosch M, Printz M, Wager J.

Dyspnea in children with life-threatening and life-limiting complex

chronic conditions. J Palliat Med, Jan 9, e-pub ahead of print. doi:

10.1089/jpm.2017.0240.

Tools and Resources Regarding Opioid Use and Risks:
•  Cancer Pain (PDQ®)–Health Professional Version:
https://www.cancer.gov/about-cancer/treatment/side-
effects/pain/pain-hp-pdq
•  Management of Chronic Pain in Survivors of Adult Cancers:
American Society of Clinical Oncology Clinical Practice Guideline:
http://ascopubs.org/doi/full/10.1200/JOP.2016.014837
•  Opioid Risk Tool:
https://www.drugabuse.gov/sites/default/files/files/OpioidRiskTool.p
df
•  CAGE-AID:
https://www.integration.samhsa.gov/images/res/CAGEAID.pdf
•  SOAPP-R: http://www.ccwjc.com/Forms/Chronic%20Pain/SOAPP-
R.pdf
•  Current Opioid Misuse Measure (COMM): http://mytopcare.org/wp-
content/uploads/2013/05/COMM.pdf
•  DIRE Score: Patient Selection for Chronic Opioid Analgesia
http://www.emergingsolutionsinpain.com/content/tools/esp_9_instru
ments/pdf/DIRE_Score.pdf
Domain 3: Psychological and Psychiatric
Aspects of Care
•  Distress Thermometer (National Comprehensive Cancer Network,
2003): https://www.nccn.org/about/permissions/thermometer.aspx
•  Edmonton Symptom Assessment Scale (ESAS):
http://www.palliative.org/NewPC/professionals/tools/esas.html or
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644623/

•  Patient Health Questionnaire (PHQ): http://www.phqscreeners.com/
or http://www.agencymeddirectors.wa.gov/files/AssessmentTools/14-
PHQ-9%20overview.pdf
•  Beck Depression Inventory (BDI-II):
http://www.apa.org/pi/about/publications/caregivers/practice-
settings/assessment/tools/beck-depression.aspx or
https://www.sciencedirect.com/topics/medicine-and-dentistry/beck-
depression-inventory
•  Hospital Anxiety and Depression Scale (HADS):
https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-1-29 or
http://www.svri.org/sites/default/files/attachments/2016-01-
13/HADS.pdf
•  State-Trait Anxiety Inventory (STAI):
http://www.apa.org/pi/about/publications/caregivers/practice-
settings/assessment/tools/trait-state.aspx or
http://growingleadersfoundation.com/wp-
content/uploads/2017/03/State-Trait-Anxiety-Inventory.pdf
•  Generalized Anxiety Disorder scale (GAD-7):
https://www.psychcongress.com/saundras-corner/scales-
screeners/anxiety-disorders/generalized-anxiety-disorder-7-gad-7 or
https://www.integration.samhsa.gov/clinical-
practice/GAD708.19.08Cartwright.pdf
•  Fear of Disease Progression scale (FoP): http://www.psycho-
oncology.info/FOP12.pdf or
https://www.ncbi.nlm.nih.gov/pubmed/16125517 or
http://media.axon.es/pdf/100475_1.pdf
•  Mini-Mental State Examination (MMSE):
http://onlinelibrary.wiley.com/doi/10.1111/j.1532-
5415.1992.tb01992.x/full

•  Addenbrooke’s Cognitive Assessment – Revised (ACE-R):
https://www.ipa-online.org/news-and-issues/addenbrookes-cognitive-
examination-revised-ace-r or
https://www.ncbi.nlm.nih.gov/pubmed/16977673 or
https://www.meded.help/wp-
content/uploads/2017/04/Addenbrookes_A_SVUH_MedEl_tool.pdf?
x30812
•  Abbreviated Mental Test Score (AMTS):
http://www.oxfordmedicaleducation.com/geriatrics/amts/ or
http://onlinelibrary.wiley.com/doi/10.1111/psyg.12276/abstract or
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2560932/
•  6-item Cognitive Impairment Test (6CIT):
https://academic.oup.com/ageing/article/47/1/61/4101644 or
https://link.springer.com/chapter/10.1007/978-3-319-44775-9_11 or
http://www.wales.nhs.uk/sitesplus/documents/862/FOI-286g-13.pdf
•  Mental Adjustment to Cancer scale (MAC):
https://www.ncbi.nlm.nih.gov/pubmed/18626853 or
http://www.oxfordclinicalpsych.com/view/10.1093/med:psych/97801
99605804.001.0001/med-9780199605804-interactive-pdf-003.pdf
•  Experiences in Close Relationships scale (ECR):
https://www.ncbi.nlm.nih.gov/pubmed/17437384 or
http://fetzer.org/sites/default/files/images/stories/pdf/selfmeasures/Att
achment-ExperienceinCloseRelationshipsRevised.pdf or
https://openpsychometrics.org/tests/ECR.php
•  Diagnostic Criteria for Psychosomatic Research (DCPR):
https://www.ncbi.nlm.nih.gov/pubmed/23383664
•  Adverse Childhood Experiences (ACEs) Assessment:
https://www.aap.org/en-us/advocacy-and-policy/aap-health-
initiatives/resilience/Pages/Clinical-Assessment-Tools.aspx

• Medical Outcomes Study Short Form (SF)-36:

https://www.sralab.org/rehabilitation-measures/medical-outcomes-

study-short-form-36

Domain 4: Social Aspects of Care

• National Association for Social Workers Standards for Palliative &

End-of-Life Care: https://www.socialworkers.org/LinkClick.aspx?

fileticket=xBMd58VwEhk%3d&portalid=0,

• National Academies of Science: Capturing Social and Behavioral

Domains and Measures in Electronic Health Records: Phase 2: This

consensus study document identifies social and behavioral domains

that most strongly determine health that can be used in electronic

health records.

http://nationalacademies.org/hmd/Reports/2014/EHRdomains2.aspx,

• Delgado-Guay M, Ferrer J, Rieber AG, et al. Financial Distress and

Its Associations with Physical and Emotional Symptoms and Quality

of Life Among Advanced Cancer Patients. Oncologist.

2015;20(9):1092-1098. doi:10.1634/theoncologist.2015-0026.

• Cyranowski JM, Zill N, Bode R, et al. Assessing Social Support,

Companionship, and Distress: NIH Toolbox Adult Social

Relationship Scales. Health Psychol. 2013;32(3):293-301.

doi:10.1037/a0028586.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3759525/

• Health Literacy Measurement Tools:

https://www.ahrq.gov/professionals/quality-patient-safety/quality-

resources/tools/literacy/index.html

• Protocol for Responding to and Assessing Patients’ Assets, Risks,

and Experiences (PRAPARE) Assessment tool to assess for social

determinants of health: http://www.nachc.org/research-and-

data/prapare/

• Military Health History: https://www.va.gov/OAA/pocketcard/

• Duncan J, Kobler K. Communication in pediatrics. In Dahlin, C.,

Coyne, P. J., & Ferrell, B. R. (Eds.). Advanced practice palliative

nursing. New York, NY: Oxford University Press, 597-608;2016.

Domain 5: Spiritual, Religious, and

Existential Aspects of Care

• Handbook of Patient’s Spiritual and Cultural Values for Health Care

Professionals. HealthCare Chaplaincy Network:

https://www.healthcarechaplaincy.org/docs/publications/landing_page

/cultural_sensitivity_handbook_from_healthcare_chaplaincy_networ

k_11_11_2015.pdf

• Handbook of Religion and Health, 2nd Edition. Koenig H. Oxford

University Press. 2012: https://www.amazon.com/Handbook-

Religion-Health-Harold-Koenig/dp/0195335953/ref=sr_1_2?

ie=UTF8&qid=1513615858&sr=8-2&keywords=koenig+handbook

• Spiritual Care: What It Means, Why It Matters in Health Care. Hall

EJ, Hughes BP, Handzo GH:

https://healthcarechaplaincy.org/docs/about/spirituality.pdf

Spiritual Screening:

• “Are You at Peace” Screening Tool:

https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/40

9431

• Rush Religious/Spiritual Screening Protocol:

http://bishopandersonhouse.org/wp-

content/uploads/2013/07/Spiritual-Screening.pdf

• King SDW, Fitchett G, Murphy PE, Pargament KI, Harrison DA,

Trice Loggers E. Determining best methods to screen for

religious/spiritual distress. Support Care Cancer 2017;25:471–479.

Spiritual History:

• FICA: https://smhs.gwu.edu/gwish/clinical/fica

• HOPE: Questions https://www.aafp.org/afp/2001/0101/p81.html

Spiritual Assessment:

• Outcome Based Chaplaincy: https://www.amazon.com/Professional-

Spiritual-Pastoral-Care-Practical/dp/1683362446

• Spiritual Aim Assessment Model:

https://pmr.uchicago.edu/sites/pmr.uchicago.edu/files/uploads/Spiritu

al%20AIM%20and%20the%20work%20of%20the%20chaplain-

%20A%20model%20for%20assessing%20spiritual%20needs%20and

%20outcomes%20in%20relationship_Kestenbaum.pdf

• Fitchett George, Assessing spiritual needs: a guide for caregivers,

2nd ed. Augsburg: Academic Renewal Press;2002.

Pediatrics:

• Lyndes KA, Fitchett G, Berlinger N, Cadge W, Misasi J, Flanagan E.

A survey of chaplains’ roles in pediatric palliative care: Integral

members of the team. J Health Care Chaplain,2012;18(1-2):74-93.

• De Andrade Alvarenga W, de Carvalho EC, Caldeira S, Vieira M,

Nascimento LC. The possibilities and challenges in providing

pediatric spiritual care. J Child Health Care,2017;21(4):435-445.

•  Ferrell B, Wittenberg E, Battista V, Walker G. Exploring the spiritual
needs of families with seriously ill children. Int J Palliat Nurs,
2016;22(8): 388-394.
•  Ferrell B, Wittenberg E, Battista V, Walker G. Nurses’ experiences of
spiritual communication with seriously ill children. J Palliat Med,
2016;19(11): 1166-1170.
Domain 6: Cultural Aspects of Care
•  National Center for Cultural Competence:
https://nccc.georgetown.edu/
•  Hmong Health: http://www.hmonghealth.org
•  Chinese American Coalition for Compassionate Care:
http://www.caccc-usa.org/en/aboutus.html
•  Office of Minority Health Resources Center U.S. Department of
Health and Human Services: http://www.minorityhealth.hhs.gov
•  National Research Center on Hispanic Children & Families:
http://www.hispanicresearchcenter.org/
•  Indian Country Media Network:
https://indiancountrymedianetwork.com/
LGBTQIA:
•  National LGBT Health Education Center:
https://www.lgbthealtheducation.org/
•  SAGE: https://www.sageusa.org/
•  LGBTQ Inclusive Hospice and Palliative Care Resources &
Checklists: https://www.lgbtq-inclusive.com/resources-and-checklists

Disabilities:

• Thinking Ahead Matters—Supporting and Improving Healthcare

Decision-Making and End-of-Life Planning for People with

Intellectual and Developmental Disabilities:

http://coalitionccc.org/wp-

content/uploads/2015/10/thinking_ahead_matters_final.pdf

• Disabilities Outreach Guide:

https://www.nhpco.org/sites/default/files/public/Access/Outreach_Dis

abilities.pdf

Health Literacy:

• Health Literacy Tool Shed: https://healthliteracy.bu.edu/

• Health Literacy and Palliative Care: Workshop Summary

http://nationalacademies.org/hmd/reports/2016/health-literacy-and-

palliative-care-workshop-summary.aspx

• Easy to Read Advance Directive: https://www.iha4health.org/our-

services/advance-directive/

Domain 7: Care of the Patient Nearing the

End of Life

• DEA regulations on drug disposal:

https://www.deadiversion.usdoj.gov/drug_disposal/

Advance Care Planning:

• Aging with Dignity, Five Wishes: https://www.agingwithdignity.org/

• CaringInfo: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1

•  Living Will Registry: http://www.uslivingwillregistry.com/faq.shtm
•  National POLST Paradigm: http://polst.org/programs-in-your-state/
Grief and Loss:
•  Association of Death Education and Counseling:
https://www.adec.org/
•  Hospice Foundation of America: https://hospicefoundation.org/Grief-
(1)
Hospice and End of Life Care:
•  Education in Palliative and End-of-life Care (EPEC):
http://bioethics.northwestern.edu/programs/epec/
•  End-of-life Nursing Education Consortium (ELNEC):
http://www.aacnnursing.org/ELNEC
•  National Association of Home Care and Hospice:
https://www.nahc.org/
•  National Hospice and Palliative Care Organization:
https://www.nhpco.org/
Pediatrics:
•  Courageous Parents Network: https://courageousparentsnetwork.org/
•  Perinatal Hospice & Palliative Care – An extensive website with
resources for parents and health care professionals:
http://www.perinatalhospice.org
•  Pregnancy Loss and Infant Death Alliance: http://www.plida.org

• RTS Bereavement Services -- Resources for team education in

perinatal, neonatal, and pediatric bereavement care; written resources

for bereaved parents: http://www.bereavementservices.org

• Carter, BS, Levetown M, Friebert, SE. Palliative Care for Infants,

Children and Adolescents: A Practical Handbook. American

Academy of Hospice and Palliative Medicine;2011.

• O’Neill Hunt M. Pediatric Palliative Care Consultant: Guidelines for

Effective Management of Symptoms. HospiScript Services;2014.

• Wolfe J. Easing distress when death is near. In Wolfe, J., Hinds, P. S.,

& Sourkes, B. M. (Eds.). The textbook of interdisciplinary pediatric

palliative care. Philadelphia, PA: Elsevier Saunders, 368-384;2011.

• Wrede-Seaman, L. (2005). Pediatric Pain and Symptom Management

Algorithm. Intellicard.

• Children’s Project on Palliative/Hospice Services (ChiPPS):

https://www.nhpco.org/pediatric

Domain 8: Ethical and Legal Aspects of

Care

Advance Care Planning:

• National Healthcare Decisions Day: https://www.nhdd.org/

• Aging with Dignity: Decision-making resources for Adults (Five

Wishes), Teens (Voicing My Choices) and Children (My Wishes):

https://www.agingwithdignity.org

• American Bar Association Commission on Law and Aging:

https://www.americanbar.org/groups/law_aging.html

•  National POLST Paradigm: http://polst.org/
•  Prepare for Your Care: https://prepareforyourcare.org/welcome
•  The Conversation Project: https://theconversationproject.org/
•  CaringInfo: http://www.caringinfo.org/
Ethics:
•  Center for Practical Bioethics: https://www.practicalbioethics.org/
•  Blueprint for 21st Century Nursing Ethics: Johns Hopkins Berman
Institute of Bioethics. 2014:
http://www.bioethicsinstitute.org/nursing-ethics-summit-report
•  The Hastings Center: Bioethics Research Institute:
http://www.thehastingscenter.org/our-issues/chronic-conditions-and-
end-of-life-care/
Capacity Assessment of Older Persons:
Physicians:
•  Appelbaum PS, Grisso T. Assessing Patients’ Capacities to Consent
to Treatment. N Engl J Med. 1988 Dec 22;319(25):1635-8. Erratum
in: N Engl J Med. 1989 Mar 16;320(11):748.
•  Dastidar JG, Odden A. How do I determine if my patient has
decision-making capacity? The Hospitalist. 2011 August;2011(8)
https://www.the-hospitalist.org/hospitalist/article/124731/howdo-i-
determine-if-my-patient-has-decision-making-capacity
•  Merel, S. Decisional Capacity.
https://depts.washington.edu/uwmedres/patientcare/objectives/hospita
list/Decisional_capacity.pdf

• PennState College of Medicine. Assessing Decision Making

Capacity. https://sites.psu.edu/humanities/files/2016/09/Assessing-

Decision-Making-Capacity-9-2016-2174ob8.pdf

Lawyers:

• American Bar Association Commission on Law and Aging and

American Psychological Association. Assessment of Older Adults

with Diminished Capacity: A Handbook for Lawyers.

http://www.apa.org/pi/aging/resources/guides/diminished-

capacity.pdf

Judges:

• American Bar Association Commission on Law and Aging,

American Psychological Association, National College of Probate

Judges. Judicial Determination of Capacity of Older Adults in

Guardianship Proceedings: A Handbook for Judges.

https://www.americanbar.org/content/dam/aba/administrative/law_agi

ng/2011_aging_bk_judges_capacity_longer_version.authcheckdam.p

Psychologists:

• American Bar Association Commission on Law and Aging and

American Psychological Association. Assessment of Older Adults

with Diminished Capacity: A Handbook for Psychologists.

http://www.apa.org/pi/aging/programs/assessment/capacity-

psychologist-handbook.pdf

Pediatrics:

• American Academy of Pediatrics, Resilience Curriculum: Resilience

in the face of grief and loss: https://www.aap.org/en-us/advocacy-

and-policy/aap-health-initiatives/hospice-palliative-

care/Pages/Resilience-Curriculum.aspx

• Children’s Mercy Center for Bioethics:

https://www.childrensmercy.org/Bioethics/

• Courageous Parents’ Network: decision-making resources for parents

and health care professionals for children with serious illness,

including resources in Spanish:

https://courageousparentsnetwork.org/

• Perinatal Hospice & Palliative Care: resources for both parents and

health care professionals making decisions regarding serious illness

during pregnancy: http://www.perinatalhospice.org/

• American Academy of Pediatrics: https://www.aap.org/en-

us/Pages/Default.aspx

• Treuman Katz Center for Pediatric Bioethics:

http://www.seattlechildrens.org/research/initiatives/bioethics/

Position and Policy Statements:

• American Academy of Hospice and Palliative Medicine. Position

Statement − Withholding and Withdrawing Non-Beneficial Medical

Interventions. Glenview, IL: American Academy of Hospice and

Palliative Medicine;2017. http://aahpm.org/positions/withholding-

nonbeneficial-interventions

• American Academy of Hospice and Palliative Medicine. Position

Statement − Statement on Artificial Nutrition and Hydration at End

of Life. Glenview, IL: American Academy of Hospice and Palliative

Medicine;2013. http://aahpm.org/positions/anh

• American Academy of Hospice and Palliative Medicine. Position

Statement – Statement on Palliative Care Research. Glenview, IL:

American Academy of Hospice and Palliative Medicine;2014.

http://aahpm.org/positions/research-ethics

• American Academy of Hospice and Palliative Medicine. Position

Statement -Statement on Palliative Sedation. Glenview, IL: American

Academy of Hospice and Palliative Medicine;2014.

http://aahpm.org/positions/palliative-sedation

• American Academy of Hospice and Palliative Medicine. Position

Statement – Statement on Physician-Assisted Dying. Glenview, IL:

American Academy of Hospice and Palliative Medicine;2016.

http://aahpm.org/positions/pad

• American Academy of Pediatrics Committee on Bioethics. Policy

Statement – Informed Consent in Decision-Making in Pediatric

Practice. Elk Grove, IL: American Academy of Pediatrics;2016.

http://pediatrics.aappublications.org/content/138/2/e20161485

• American Academy of Pediatrics Committee on Bioethics. Policy

Statement – Honoring Do-Not-Attempt-Resuscitation Requests in

Schools. Elk Grove, IL: American Academy of Pediatrics;2010.

Reaffirmed 2016.

http://pediatrics.aappublications.org/content/125/5/1073

• American Academy of Pediatrics Committee on Bioethics. Pediatric

Palliative Care and Hospice Care Commitments, Guidelines, and

Recommendations. Elk Grove, IL: American Academy of

Pediatrics;2013.

http://pediatrics.aappublications.org/content/132/5/966

• American Academy of Pediatrics Committee on Bioethics. Policy

Statement – Ethical Controversies in Organ Donation after

Circulatory Death. Elk Grove, IL: American Academy of

Pediatrics;2013. Reaffirmed 2017.

http://pediatrics.aappublications.org/content/131/5/1021

• American Academy of Pediatrics Committee on Bioethics. Policy

Statement – Physician Refusal to Provide Information or Treatment

on the Basis of Claims of Conscience. Elk Grove, IL: American

Academy of Pediatrics;2009, Reaffirmed 2014.

http://pediatrics.aappublications.org/content/124/6/1689

• American Academy of Pediatrics Committee on Bioethics. Policy

Statement – Institutional Ethics Committees. Elk Grove, IL:

American Academy of Pediatrics;2001, Reaffirmed 2014.

http://pediatrics.aappublications.org/content/107/1/205

• American Academy of Pediatrics Committee on Bioethics. Policy

Statement – Forgoing Medically Provided Nutrition and Hydration in

Children. Elk Grove, IL: American Academy of Pediatrics;2009,

Reaffirmed 2014.

http://pediatrics.aappublications.org/content/124/2/813

• American Academy of Pediatrics Committee on Bioethics. Policy

Statement – Communicating with Children and Families: From

Everyday Interactions to Skill in Conveying Distressing Information.

Elk Grove, IL: American Academy of Pediatrics;2008, Reaffirmed

2017. http://pediatrics.aappublications.org/content/121/5/e1441

• American Academy of Pediatrics Committee on Bioethics.

Guidelines on Forgoing Life-sustaining Medical Treatment. Elk

Grove, IL: American Academy of Pediatrics;2017.

http://pediatrics.aappublications.org/content/140/3/e20171905

• American Academy of Pediatrics Committee on Fetus and Newborn.

Noninitiation or Withdrawal of Intensive Care for High-Risk

Newborns. Elk Grove, IL: American Academy of Pediatrics;2007.

Reaffirmed 2014.

http://pediatrics.aappublications.org/content/119/2/401.full?

sid=6cdfa1d6-8fd4-48fc-81a1-7d637f568d5b

• American Medical Association. Code of Medical Ethics’ Opinions

Related to End-of-Life Care. AMA Journal of Ethics.

https://journalofethics.ama-assn.org/article/ama-code-medical-ethics-

opinions-related-end-life-care/2018-08

• American Nurses Association. Position Statement − The Ethical

Responsibility to Manage Pain and the Suffering It Causes. Silver

Spring: MD: American Nurses Association. 2018.

https://www.nursingworld.org/~495e9b/globalassets/docs/ana/ethics/t

heethicalresponsibilitytomanagepainandthesufferingitcauses2018.pdf

• American Nurses Association. Position Statement − Nursing Care

and Do Not Resuscitate (DNR) and Allow Natural Death (AND)

Decisions. Washington, DC: American Nurses Association;2012.

https://www.nursingworld.org/~4ad4a8/globalassets/docs/ana/nursing

-care-and-do-not-resuscitate-dnr-and-allow-natural-death-

decisions.pdf

• American Nurses Association. Position Statement – Euthanasia,

Assisted Suicide, and Aid in Dying. Washington, DC: American

Nurses Association;2013.

https://www.nursingworld.org/~4ae33e/globalassets/docs/ana/euthana

sia-assisted-suicideaid-in-dying_ps042513.pdf

• American Nurses Association. Position Statement – Code of Ethics

for Nurses. Washington, DC: American Nurses Association;2015.

http://www.nursingworld.org/codeofethics

• American Nurses Association. Position Statement − Nurses’ Roles

and Responsibilities in Providing Care and Support at the End of

Life. Washington, DC: American Nurses Association;2016.

https://www.nursingworld.org/~4af078/globalassets/docs/ana/ethics/e

ndoflife-positionstatement.pdf

• American Nurses Association. Position Statement − The Nurse’s Role

in Ethics and Human Rights: Protecting and Promoting Individual

Worth, Dignity, and Human Rights in Practice Settings. Washington,

DC: American Nurses Association;2016.

https://www.nursingworld.org/~4ad4a8/globalassets/docs/ana/nursesr

ole-ethicshumanrights-positionstatement.pdf

• American Nurses Association. Position Statement – Therapeutic Use

of Marijuana and Related Cannabinoids. Washington, DC: American

Nurses Association;2016.

https://www.nursingworld.org/~49a8c8/globalassets/practiceandpolic

y/ethics/therapeutic-use-of-marijuana-and-related-cannabinoids-

position-statement.pdf

• American Nurses Association. Position Statement – Nutrition and

Hydration at the End of Life;2017.

https://www.nursingworld.org/~4ad4a8/globalassets/docs/ana/nutritio

n-and-hydrationat-end-of-life.pdf

• American Psychological Association. Resolution on Palliative Care

and End-of-life Issues and Justification. Washington, DC: American

Psychological Association;2017.

http://www.apa.org/about/policy/palliative-care-eol.aspx

• American Society of Health System Pharmacists. ASHP Guidelines

on the Pharmacist’s Role in Palliative and Hospice Care. American

Journal of Health-System Pharmacists;2016.

http://www.ajhp.org/content/73/17/1351.long?sso-checked=true

• Hospice and Palliative Nurses Association. Position Statement −

Artificial Nutrition and Hydration in Advanced Illness. Pittsburgh,

PA: Hospice and Palliative Nurses Association;2011.

https://advancingexpertcare.org/position-statements/

• Hospice and Palliative Nurses Association. Position Statement – Role

of Palliative Care in Organ and Tissue Donation. Pittsburgh, PA:

Hospice and Palliative Nurses Association;2013.

https://advancingexpertcare.org/position-statements/

• Hospice and Palliative Nurses Association. Position Statement – The

Use of Medical Marijuana. Pittsburgh, PA: Hospice and Palliative

Nurses Association;2014. https://advancingexpertcare.org/position-

statements/

• Hospice and Palliative Nurses Association. Position Statement – The

Role of Hospice and Palliative Nurses in Research. Pittsburgh, PA:

Hospice and Palliative Nurses Association;2016.

https://advancingexpertcare.org/position-statements/

• Hospice and Palliative Nurses Association. Position Statement –

Withholding and/or Withdrawing Life-Sustaining Therapies.

Pittsburgh, PA: Hospice and Palliative Nurses Association;2016.

https://advancingexpertcare.org/position-statements/

• Hospice and Palliative Nurses Association. Position Statement −

Palliative Sedation. Pittsburgh, PA: Hospice and Palliative Nurses

Association;2016. https://advancingexpertcare.org/position-

statements/

• Hospice and Palliative Nurses Association. Position Statement –

Physician Assisted Death/Physician Assisted Suicide. Pittsburgh, PA:

Hospice and Palliative Nurses Association;2017.

https://advancingexpertcare.org/position-statements/

• Hospice and Palliative Nurses Association. Position Statement – The

Ethics of the Use of Opioids in Palliative Nursing. Pittsburgh, PA:

Hospice and Palliative Nurses Association;2017.

https://advancingexpertcare.org/position-statements/

• National Association of Neonatal Nurses. Position Statement –

Palliative and End-of-Life Care for Newborns and Infants. Chicago,

IL: National Association of Neonatal Nurses;2015.

http://nann.org/uploads/About/PositionPDFS/1.4.5_Palliative%20and

%20End%20of%20Life%20Care%20for%20Newborns%20and%20I

nfants.pdf

• National Association of Neonatal Nurses. Position Statement – NICU

Nurse Involvement in Ethical Decisions (Treatment of Critically Ill

Newborns). Chicago, IL: National Association of Neonatal

Nurses;2016.

http://nann.org/uploads/3067_NICU_Nurse_Involvement_in_Ethical

_Decisions.pdf

• National Association for Social Workers Standards for Palliative &

End of Life Care. https://www.socialworkers.org/LinkClick.aspx?

fileticket=xBMd58VwEhk%3d&portalid=0

• National Hospice and Palliative Care Organization. Position

Statement – Commentary and Position Statement on Artificial

Nutrition and Hydration. Alexandria, VA: National Hospice and

Palliative Care Organization;2010.

https://www.nhpco.org/sites/default/files/public/ANH_Statement_Co

mmentary.pdf

• National Hospice and Palliative Care Organization. Position

Statement – Commentary and Position Statement on the Use of

Palliative Sedation in Imminently Dying Terminally Ill Patients.

Alexandria, VA: National Hospice and Palliative Care

Organization;2010.

https://www.nhpco.org/sites/default/files/public/JPSM/NHPCO_Pall-

Sedation-Ther_JPSM_May2010.pdf

• National Hospice and Palliative Care Organization. Position

Statement − Hospice and Palliative Care: Ethical Marketing

Practices. Alexandria, VA: National Hospice and Palliative Care

Organization;2011.

https://www.nhpco.org/sites/default/files/public/NHPCO_Ethical_Ma

rketing_Statement_June11.pdf

Appendix III: Contributors

We would like to extend our appreciation to the additional individuals and

organizations who provided their time and expertise about different aspects

of the NCP Guidelines.

Subject Matter Experts

The following subject matter experts provided topic-specific input to the

NCP Writing Workgroup:

Domain 3: Psychological and Psychiatric Aspects of Care

• Susan Block, MD, Dana-Farber Cancer Institute

• Kenneth J. Doka, MDiv, PhD, The College of New Rochelle

• Frances Eichholz Heller, LMSW, ACHP-SW, NY Presbyterian,

Columbia University Medical Center

• Elizabeth Goy, MA, PhD, Rebecca S. Allen, PhD, ABPP, Brian D.

Carpenter, PhD, Veronica L. Shead, PhD, Debbie DiGilio, MPH,

American Psychological Association Working Group on End of Life

Issues and Care

• Shibani Ray-Mazumder, ScD, PhD, New York State Psychological

Association Palliative Care Psychology Task Force

• Christina Puchalski, MD, MS, FACP, FAAHPM, George Washington

University Institute for Spirituality and Health

Domain 6: Cultural Aspects of Care

• Brenda Gonzalez, Agrace Hospice & Palliative Care

• Maichou Lor, PhD, RN, Postdoctoral Research Fellow (Nursing),

Columbia University

Domain 8: Ethical and Legal Aspects of Care

• Charlie Sabatino, JD, American Bar Association Commission on

Law and Aging

• Timothy W. Kirk, PhD, MJHS Hospice & Palliative Care

Practice Examples

The following palliative care and hospice programs contributed their

experience to inform the Practice Examples:

• Advocate Children’s Hospital, Park Ridge, IL

• Akron Children’s Hospital, Akron, OH

• Aspire Health, Nashville, TN

• Blue Shield of California, San Francisco, CA

• Bluegrass Navigators, Lexington, KY

• Center to Advance Palliative Care, New York, NY

• Dana-Farber Cancer Institute/Harvard Medical School, Boston, MA

• Emory Palliative Care Center, Atlanta, GA

• Fairview Health Services, Minneapolis, MN

• Four Seasons, Flat Rock, NC

• Gallup Indian Health Services, Gallup, NM

• Hometown Health Centers, Schenectady, NY

• JourneyCare, Barrington, IL

• Lehigh Valley Health Network OACIS Palliative Medicine,

Allentown, PA

• Memorial Herman Physician Network and Symptom Management

Consultants, Houston, TX

• Mount Sinai Health System, New York, NY

• NYU School of Medicine, Bellevue Hospital, New York, NY

• OSF HealthCare, Peoria, IL

• Palliative Medicine & Supportive Care at Northwestern Medicine −

Lake Forest Hospital, Lake Forest, IL

• Presbyterian Healthcare Services, Albuquerque, NM

• ProHEALTH Care, Lake Success, NY

• Providence Little Company of Mary Medical Center, San Pedro, CA

• Providence St Joseph Medical Center Burbank, Burbank, CA

• Resolution Care, Eureka, CA

• Sharp HealthCare, San Diego, CA

• Sutter Health, Sutter Care at Home, Fairfield, CA

• Texas Children’s Hospital, Houston, TX

• Trinity Health, Livonia, MI

• University of Alabama at Birmingham, School of Nursing,

Birmingham, AL

• University of California San Francisco, San Francisco, CA

• VITAS Healthcare, Miami, FL

Appendix IV: Scoping Review

The NCP Guidelines includes a selected bibliography of articles identified

in a scoping review designed to identify resources to support the

recommendations and conclusions in this document. Concurrently with the

review of this document a systematic review to accompany the NCP

Guidelines was completed.

As a result, the bibliography in this document is in no way comprehensive.

It is a list of selected citations from a variety of journals organized by

domain and topic. In addition to the eight domains, the literature review

focused on:

• Pediatric palliative care

• Bereavement and grief

The literature review also focused on the six key themes:

1. Comprehensive assessment

2. Caregiving

3. Care coordination

4. Care transitions

5. Culture

6. Communication

Both qualitative and quantitative studies are included, as well as published

consensus statements, expert opinions, and statements from professional

organizations.

Scoping Review Methodology

This systematic review used Academic Search Complete, AgeLine, Alt.

HealthWatch, CINAHL Complete, Health Source: Consumer Edition;

Health Source: Nursing/Academic Edition, MEDLINE, PsychArticles,

Psychology and Behavioral Science Collection, PsychInfo, and Social Work

Abstracts databases to search for evidence-based literature across the eight

domains as listed within the Clinical Practice Guidelines for Quality

Palliative Care, 3rd edition.1

This database search was limited to peer-reviewed journal articles published

between January 1, 2007 and September 17, 2017. All searches were

conducted using the following search terms in exact string order: “palliative

care or end of life care or terminal care or dying or advanced illness or

serious illness” and “united states or us.” A total of 21,533 articles were

identified across all eight domains and the three additional searches using

the search terms defined below.

Domain 1: Structure and Processes of Care

The initial search on the structure and processes of care was conducted

using various search term iterations to gather literature related to cross-

cutting themes within this domain, including: “structure,” “culture,” “access

to care,” “education,” “interdisciplinary,” “finance,” “quality,” “workforce,”

“triggers,” “population health,” “communication,” and “education.” Upon

removal of duplicate articles, a total of 2,436 separate titles and abstracts

were retrieved for further review.

A subsequent search for domain, structure and process of care, was

conducted using the following search terms in exact string order: “palliative

care or end of life care or terminal care or dying or advanced illness or

serious illness” and “united states.” Various search term iterations were

used to gather literature related to cross-cutting themes within this domain,

which include: “rural,” “urban,” “interdisciplinary,” and “pediatric.” Upon

removal of duplicate articles and screening of titles and abstracts, a total of

129 separate articles were retrieved for inclusion.

Domain 2: Physical Aspects of Care

The physical aspects of care search included the following search terms to

gather literature related to cross-cutting themes within the domain,

including: “cultur*1,” “symptom,” “communication,” “pain,” “activities of

daily living or ADLs,” “illness or disease or syndrome or condition,”

“dementia,” “heart failure,” “pulmonary,” “cancer,” “ALS,” “Parkinson’s,”

“stroke,” “kidney,” “liver,” “frailty,” “assessment,” “care goals,” and “care

plan.” An asterisk symbol was placed at the end of “cultur” to broaden the

search by finding words that start with the same root respectively (eg,

cultures, cultural). Upon removal of duplicate articles, a total of 2,522

separate titles and abstracts were retrieved for further review.

Domain 3: Psychological and Psychiatric Aspects of Care

An initial search on psychological and psychiatric aspects of palliative care

was conducted using various search term iterations to gather literature

related to cross-cutting themes within this domain, including: “cultur*1,”

“depression,” “communication,” “dementia,” “delirium,” “anxiety,”

“hopelessness,” “behavioral disturbances,” “substance use disorder,”

“PTSD or post-traumatic stress disorder,” “post-illness psychosis,” “dual

diagnosis,” “psychiatric,” “grief or bereavement,” “aid in dying or assisted

suicide or euthanasia or hasten death,” “suicide,” “disability,” “assessment,”

“care goals,” and “care plan.” An asterisk symbol was placed at the end of

“cultur” to broaden the search by finding words that start with the same root

respectively (eg, cultures, cultural). Upon removal of duplicate articles, a

total of 2,336 separate titles and abstracts were retrieved for further review.

Domain 4: Social Aspects of Care

The social aspects of care literature search included the following cross-

cutting terms relevant to this domain, including: “psychosocial,” “cultur*,”

“communication,” “family systems theory,” “social determinants of care or

social determinants of health,” “loneliness,” “social work*,” “empathy,”

“motivational interviewing,” “assessment,” “care goals,” and “care plan.”

An asterisk symbol was placed at the end of “social work” to broaden the

search by finding words that start with the same root respectively (eg, social

worker, social working). Upon removal of duplicate articles, a total of 1,715

separate titles and abstracts were retrieved for further review.

Domain 5: Spiritual, Religious, and Existential Aspects of Care

The first search related to content in the spiritual aspects of care domain

included selected search terms, including: “spiritual,” “cultur*,”

“communication,” “religious or religion or religiosity,” “existential,”

“beliefs,” “values,” “chaplain or clergy or spiritual caregiver,”

“assessment,” “care goals,” and “care plan.” An asterisk symbol was placed

at the end of “cultur” to broaden the search by finding words that start with

the same root respectively (eg, cultures, cultural). Upon removal of

duplicate articles, a total of 2,393 separate titles and abstracts were retrieved

for further review.

A subsequent search was conducted to capture other topics relevant to the

domain content: “chaplain,” “chaplaincy,” and “spiritual care.” Upon

removal of duplicate articles, a total of 348 separate titles and abstracts

were retrieved for further review.

Domain 6: Cultural Aspects of Care

An initial search on the cultural aspects of care was conducted using the

following search terms: “cultural,” “cultur*,” “communication,”

“intersectionality,” “transcultural,” “cultural humility,” “culturally

inclusive,” “radical respect,” “competence,” “disparities,” “race or racial or

race or ethnicity,” “socioeconomic status,” “gender identity or sex,” “sexual

orientation,” “sexuality,” “interpreters or medical interpreters,”

“immigrant,” “cultural brokers,” “language,” “literacy,” “assessment,” “care

goals,” and “care plan.” An asterisk symbol was placed at the end of

“cultur” to broaden the search by finding words that start with the same root

respectively (eg, cultures, cultural). Upon removal of duplicate articles, a

total of 3,103 separate titles and abstracts were retrieved for further review.

An additional 16 articles were identified after a hand-checked review of

references by the writing dyad following the initial database search.

Domain 7: Care of the Patient Nearing the End of Life

An initial search specific to Domain 7 was conducted to gather literature

related to cross-cutting themes within this domain, including: “hospice,”

“cultur*,” “communication,” “eligibility,” “comfort measures,” “prognosis

or prognostication,” “hope,” “life closure,” “terminal illness,” “terminal

sedation or palliative sedation,” “advance care planning or advanced

directive,” “POLST or physician orders for life sustaining treatment,” “aid

in dying or assisted suicide or euthanasia or hasten death,” “funeral,”

“assessment,” “care goals,” and “care plan.” An asterisk symbol was placed

at the end of “cultur” to broaden the search by finding words that start with

the same root respectively (eg, cultures, cultural). Upon removal of

duplicate articles, a total of 2,739 separate titles and abstracts were retrieved

for further review.

Domain 8: Ethical and Legal Aspects of Care

The search related to ethical and legal aspects of care included the

following search terms: “ethics or ethical principles,” “cultur*,”

“communication,” “legal,” “decisional capacity,” “cognitively impaired,”

“consent,” “shared decision making,” “safety or risks,” “disability,” “futile

care,” “advanced care planning,” “aid in dying or assisted suicide or

euthanasia or hasten death,” “assessment,” “care goals,” and “care plan.”

An asterisk symbol was placed at the end of “cultur” to broaden the search

by finding words that start with the same root respectively (eg, cultures,

cultural). Upon removal of duplicate articles, a total of 2,336 separate titles

and abstracts were retrieved for further review.

Additional Searches

Additional searches were conducted to retrieve articles within the following

content areas: pediatrics, care transitions and coordination of care, and

grief, bereavement and survivorship. These searches were conducted using

the same databases and inclusion criteria as in the aforementioned eight

domains.

Pediatrics

The pediatrics search focused on the following content areas: “pediatrics,”

“neonatal,” “grief,” and “care coordination.” Upon removal of duplicate

articles, a total of 118 separate titles and abstracts were retrieved for further

review.

Care Transitions and Coordination of Care

The literature search related to care transitions and coordination of care

focused specifically on these two content areas within the context of

palliative care: “care transitions” and “care coordination.” Upon removal of

duplicate articles, a total of 261 separate titles and abstracts were retrieved

for further review.

Grief, Bereavement, and Survivorship

An initial search on grief, bereavement, and survivorship was conducted to

explore the differences between grief and bereavement and review the

literature related to survivorship. The following terms were included:

“grief,” “bereavement,” and “survivorship.” Upon removal of duplicate

articles, a total of 1,097 separate titles and abstracts were retrieved for

further review.

Review and Inclusion Process

A three-stage review process was used to determine whether or not articles

were included in the final bibliography. During the first-stage, all titles and

abstracts were reviewed for relevancy based on the article title. During the

second stage, abstracts of the remaining articles were read. At the third-

stage, writers requested articles to review to determine if the article was

applicable to the domain content.

Domain 1: Structure and Processes of Care

Access

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illness management and endof-life care: A view from rural America. J

Law Med Ethics. 2011;39(2):140-155.

Fishman J, O’Dwyer P, Lu HL, Henderson H, Asch DA, Casarett DJ. Race,

treatment preferences, and hospice enrollment: Eligibility criteria may

exclude patients with the greatest care needs. Cancer. 2009;115(3):689-

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Hoffman HC, Dickinson GE. Characteristics of prison hospice programs in

the United States. Am J Hosp Palliat Care. 2011;28(4):245-252.

Jones BW. The need for increased access to pediatric hospice and palliative

care. Dimens Crit Care Nurs. 2011;30(5):231-235.

Keim-Malpass J, Mitchell E, Blackhall L, DeGuzman P. Evaluating

stakeholder-identified barriers in accessing palliative care at an NCI-

designated cancer center with a rural catchment area. J Palliat Med.

2015;18(7):634-637. doi:10.1089/jpm.2015.0032.

Lyckholm JJ, Coyne PJ, Kreutzer KO, Ramakrishnan V, Smith TJ. Barriers

to effective palliative care for low-income patients in the late stages of

cancer: A report of a study and strategies for defining and conquering the

barriers. Nurs Clin North Am. 2010;45(3):399-409.

Meier DE. Increased access to palliative care and hospice services:

Opportunities to improve value in health care. Milbank Quarterly.

2011;89(3):343-380.

Menzel PT. The cultural moral right to a basic minimum of accessible

health care. Kennedy Inst Ethics J. 2011;21(1):79-119.

Morrison RS, Augustin R, Souvanna P, Meier DE. America’s care of

serious illness: A state-by-state report card on access to palliative care in

our nation’s hospitals. J Palliat Med. 2011;14(10):1094-1096.

Nyatanga B. The pursuit of cultural competence: Service accessibility and

acceptability. Int J Palliat Nurs. 2011;17(5):212-215.

Pesut B, Beswick F, Robinson CA, Bottorff JL. Philosophizing social

justice in rural palliative care:

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Rowett D, Ravenscroft PJ, Hardy J, Currow DC. Using national health

policies to improve access to palliative care medications in the

community. J Pain Symptom Manage. 2009;37(3):395-402.

Vassal P, Le Coz P, Herve C, Matillon Y, Chapuis F. Is the principle of equal

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Communication

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Au DH, Udris EM, Engelberg RA, et al. A randomized trial to improve

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Boyd D, Merkh K, Rutledge D, Randall V. Nurses’ perceptions and

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Casarett D, Pickard A, Fishman JM, et al. Can metaphors improve

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reporting: Differences in the threshold of reporting between hospice and

palliative care. J Palliat Med. Jan 2009;12(1):64-70.

Lynch MT, Dahlin C, Bakitas MK. Bowel obstruction and delirium:

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McCormack WC. An AAHPM and AGS leadership collaboration: The

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Powers B, Norton S, Schmitt M, Quill T, Metzger M. Meaning and practice

of palliative care for hospitalized older adults with life limiting illnesses.

J Aging Res. 2011;2011:1-8. doi:10.4061/2011/406164.

Rao SS, Go JT. Update on the management of constipation in the elderly:

New treatment options. Clin Interv Aging. 2010;5:163-171.

Pediatrics

Armstrong-Dailey A, Zarbock S. Hospice Care for Children. 3rd ed. New

York, NY: Oxford University Press; 2009.

Bona K, Bates J, Wolfe J. Massachusetts’ pediatric palliative care network:

Successful implementation of a novel state-funded pediatric palliative

care program. J Palliat Med. Nov 2011;14(11):1217-1223.

Christenson K, Lybrand S, Hubbard C, Hubble R, Ahsens L, Black P.

Including the perspective of the adolescent in palliative care preferences.

J Pediatr Health Care. 2010;24(5):286-291.

doi:10.1016/j.pedhc.2009.07.001.

Doorenbos A, Lindhorst T, Starks H, Aisenberg E, Curtis J, Hays R.

Palliative care in the pediatric ICU: Challenges and opportunities for

family-centered practice. J Soc Work End Life Palliat Care.

2012;8(4):297-315. doi:10.1080/15524256.2012.732461.

Ferrell B, Wittenberg E, Battista V, Walker G. Nurses’ experiences of

spiritual communication with seriously ill children. J Palliat Med.

2016;19(11):1166-1170. doi:10.1089/jpm.2016.0138.

Fitchett G, Lyndes K, Cadge W, Berlinger N, Flanagan E, Misasi J. The role

of professional chaplains on pediatric palliative care teams: Perspectives

from physicians and chaplains. J Palliat Med. 2011;14(6):704-707.

doi:10.1089/jpm.2010.0523.

Gilmer M, Foster T, Bell C, Mulder J, Carter B. Parental perceptions of care

of children at end of life. Am J Hosp Palliat Care. 2012;30(1):53-58.

doi:10.1177/1049909112440836.

Hexem KR, Mollen CJ, Carroll K, Lanctot DA, Feudtner C. How parents of

children receiving pediatric palliative care use religion, spirituality, or

life philosophy in tough times. J Palliat Med.2011;14(1):39-44.

Jonas D, Bogetz J. Identifying the deliberate prevention and intervention

strategies of pediatric palliative care teams supporting providers during

times of staff distress. J Palliat Med. 2016;19(6):679-683.

doi:10.1089/jpm.2015.0425.

Jones BW. The need for increased access to pediatric hospice and palliative

care. Dimens Crit Care Nurs. 2011;30(5):231-235.

Kars MC, Grypdonck MH, vanDelden JJ. Being a parent of a child with

cancer throughout the end-of-life course. Oncol Nurs Forum.

2011;38(4):E260-E271.

Knapp CA, Thompson LA, Vogel WB, Madden VL, Shenkman EA.

Developing a pediatric care program: Addressing the lack of baseline

expenditure information. Am J Hosp Palliat Care. 2009;26(1):40-46.

Liben S, Papadatou D, Wolfe J. Paediatric palliative care: Challenges and

emerging ideas. The Lancet. 2008;371(9615):852-864.

doi:10.1016/s0140-6736(07)61203-3.

Lyndes K, Fitchett G, Berlinger N, Cadge W, Misasi J, Flanagan E. A

survey of chaplains’ roles in pediatric palliative care: Integral members

of the team. J Health Care Chaplain. 2012;18(1-2):74-93.

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Hospice and Palliative Care Organization; 2009.

Pritchard S, Cuvelier G, Harlos M, Barr R. Palliative care in adolescents

and young adults with cancer. Cancer. 2011;117(10 Supplement):2323-

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Uncan J, Spengler E, Wolfe J. Providing pediatric palliative care. MCN Am

J Matern Child Nurs. 2007;32(5):279-287.

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standards for children and adolescents with cancer and their families: An

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TL. End-of-life care for the dying child: What matters most to parents. J

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Wool C, Côté-Arsenault D, Perry Black B, Denney-Koelsch E, Kim S,

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Professional Educational Resources

Hospice

National Hospice and Palliative Care Organization. Hospice Volunteer

Program Resource Manual. Alexandria, VA: National Hospice and

Palliative Care Organization; 2015.

National Hospice and Palliative Care Organization. Community Outreach

Tools and Resources. Alexandria, VA: National Hospice and Palliative

Care Organization; 2009. https://www.nhpco.org/resources/outreach-

tools

National Hospice and Palliative Care Organization. Hospice COPs, Tools

and Tips. Alexandria, VA: National Hospice and Palliative Care

Organization; 2009.

National Hospice and Palliative Care Organization. Essential Guide to

Hospice Management. Alexandria, VA: National Hospice and Palliative

Care Organization; 2011.

National Hospice and Palliative Care Organization. Hospice Care: A

Physician’s Guide (REVISED). Alexandria, VA: National Hospice and

Palliative Care Organization; 2011.

National Hospice and Palliative Care Organization. Certification and

Recertification of Hospice Terminal Illness (REVISED). Alexandria, VA:

National Hospice and Palliative Care Organization; 2011.

Medicine

American Academy of Hospice and Palliative Medicine. Compensation and

Benefits Survey: 2010 Report. Glenview, IL: American Academy of

Hospice and Palliative Medicine; 2010.

Chamberlain BH. Hospice Medical Director Billing Guide. 2011;

http://connect.aahpm.org/HigherLogic/System/DownloadDocumentFile.

ashx?DocumentFileKey=e56ff2d7-2764-49e1-97a5-5a2bc596129b

Accessed December 17, 2012.

O’Mahony S, Gerhart J, Grosse J, Abrams I, Levy M. Posttraumatic stress

symptoms in palliative care professionals seeking mindfulness training:

Prevalence and vulnerability. Palliat Med. 2015;30(2):189-192.

doi:10.1177/0269216315596459.

Quill T, Holloway RG, Shah MS, Caprio TV, Storey Jr. CP. Primer of

Palliative Care 5th ed. Glenview, IL: American Academy of Hospice

and Palliative Medicine; 2010.

Quill T. Primer Workbook. Glenview, IL: American Academy of Hospice

and Palliative Medicine; 2010. Hospice Medical Director Manual.

Glenview, IL: American Academy of Hospice and Palliative Medicine;

2011.

UNIPAC QR: A Quick Reference Guide to the UNIPAC Self-Study Program.

Glenview, IL: American Academy Hospice and Palliative Medicine;

2009.

Nursing

Core Curriculum for the Advanced Practice Hospice and Palliative

Registered Nurse. Pittsburgh, PA: Hospice and Palliative Nurses

Association; 2012.

Core Curriculum for the Hospice and Palliative Administrator. Pittsburgh,

PA: Hospice and Palliative Nurses Association; 2010.

Core Curriculum for the Long-Term Care Nurse. Pittsburgh, PA: Hospice

and Palliative Nurses Association; 2012.

Core Curriculum for the Licensed Practical/Vocational Nurse. Pittsburgh,

PA: Hospice and Palliative Nurses Association; 2010.

Dahlin C. The Hospice and Palliative Advanced Practice Registered Nurse

Professional Practice Guide. Pittsburgh, PA: Hospice and Palliative

Nurses Association; 2017.

Dahlin, C, Coyne P, Ferrell, B. Advanced Practice Palliative Nursing. New

York, NY: Oxford University Press; 2016.

Hospice and Palliative Nurses Association. Competencies for the Generalist

Hospice and Palliative Nurse. 2nd ed. Pittsburgh, PA: Hospice and

Palliative Nurses Association; 2012.

Martinez H, Berry, P. Core Curriculum for the Hospice and Palliative

Registered Nurse. Pittsburgh, PA: Hospice and Palliative Nurses

Association; 2015.

Study Guide for the Generalist Hospice and Palliative Nurse. 3rd ed.

Pittsburgh, PA: Hospice and Palliative Nurses Association; 2009.

Study Guide For The Licensed Practical/Vocational Hospice And Palliative

Nurse. Revised ed. Pittsburgh, PA: Hospice and Palliative Nurses

Association; 2010.

Social Work

Association of Oncology Social Work. AOSW Standards of Practice in

Oncology Social Work 2012; https://www.aosw.org/professional-

development/standards-of-practice/ Accessed December 17, 2012.

Association of Pediatric Oncology Social Workers. The Association of

Pediatric Oncology Social Workers Standards of Practice. 2009;

www.aposw.org/docs/StandardsOfPractice.pdf

Collaboration of City of Hope, Association of Oncology Social Work,

Association of Pediatric Oncology Social Workers. ExCEL in Social

Work: Excellence in Cancer Education and Leadership

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Gardner D, Gerbino S, Walls J, Chachkes E, Doherty M. Mentoring the

next generation of social workers in palliative and end-of-life care: The

Zelda foster studies program. J Soc Work End Life Palliat Care.

2015;11(2):107-131. doi:10.1080/15524256.2015.1074142.

Institute Social Work Policy. Hospice social work: Linking policy, practice,

and research. A report from the March 25, 2010 symposium. 2010;

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Social Work Hospice & Palliative Care Network. Home page. The first

social work organization in end of-life and palliative care. Resources for

hospice and palliative social workers. http://www.swhpn.org.

National Association of Social Workers. Encyclopedia of Social Work. 20th

ed. Washington, DC: NASW Press; 2008.

National Association of Social Workers. Social workers in hospice and

palliative care: Occupational profile. 2010;

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Quality and Outcomes

Altilio T, Otis-Green S, Dahlin C. Applying the national quality forum

preferred practices for palliative care and hospice care: A social work

perspective. J Soc Work End Life Palliat Care. 2008;4(1):3-16.

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Beckstrand RL, Hadley KH, Luthy KE, Macintosh JL. Critical care nurses’

suggestions to improve end-of-life care obstacles: Minimal change over

17 years. Dimens Crit Care Nurs. 2017;36, 264-270.

Bernacki R, Ko D, Higgins P et al. Improving access to palliative care

through an innovative quality improvement initiative: An opportunity for

pay-for-performance. J Palliat Med. 2012;15(2):192-199.

doi:10.1089/jpm.2011.0301.

Boucher N, White S, Keith D. A framework for improving chronic critical

illness care. Med Care. 2016;54(1):5-8.

doi:10.1097/mlr.0000000000000460.

Boyer R, McPherson ML, Deshpande G, Smith SW. Improving medication

error reporting in hospice care. Am J Hosp Palliat Care. 2009;26(5):361-

367.

Carlson MD, Barry C, Schlesinger M, et al. Quality of palliative care at US

hospices: Results of a national survey. Med Care. Sep 2011;49(9):803-

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Carpenter J, McDarby M, Smith D, Johnson M, Thorpe J, Ersek M.

Associations between timing of palliative care consults and family

evaluation of care for veterans who die in a hospice/palliative care unit. J

Palliat Med. 2017;20(7):745-751. doi:10.1089/jpm.2016.0477.

Casarett D, Johnson M, Smith D, Richardson D. The optimal delivery of

palliative care: A national comparison of the outcomes of consultation

teams vs inpatient units. Arch Intern Med. Apr 11 2011;171(7):649-655.

Casarett D, Pickard A, Bailey F et al. A nationwide VA palliative care

quality measure: The family assessment of treatment at the end of life. J

Palliat Med. 2008;11(1):68-75. doi:10.1089/jpm.2007.0104.

De Roo ML, Leemans K, Claessen SJ, et al; EURO IMPACT. Quality

indicators for palliative care: Update of a systematic review. J Pain

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Dobrof J, Heyman J, Greenberg R. Building on community assets to

improve palliative and end-of-life care. J Soc Work End Life Palliat

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Fawole O, Dy S, Wilson R et al. A systematic review of communication

quality improvement interventions for patients with advanced and

serious illness. J Gen Intern Med. 2012;28(4):570-577.

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Fink R, Oman K, Youngwerth J, Bryant L. A palliative care needs

assessment of rural hospitals. J Palliat Med. 2013;16(6):638-644.

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Gramling R, Stanek S, Ladwig S et al. Feeling heard and understood: A

patient-reported quality measure for the inpatient palliative care setting.

J Pain Symptom Manage. 2016;51(2):150-154.

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Hanson LC, Rowe C, Wessell K, et al. Measuring palliative care quality for

seriously ill hospitalized patients. J Palliat Med. 2012;15 (7):798-804.

Hanson LC, Schenck AP, Rokoske FS, et al. Hospices’ preparation and

practices for quality measurement. J Pain Symptom Manage.

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Johnson KS, Elbert-Avila K, Kuchibhatla M, Tulsky JA. Characteristics and

outcomes of hospice enrollees with dementia discharged alive. J Am

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Kamal AH, Bull J, Stinson C, et al. Collecting data on quality is feasible in

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2011;42(5):663-667.

McMillan SC, Small BJ, Haley WE. Improving hospice outcomes through

systematic assessment: A clinical trial. Cancer Nurs. 2011;34(2):89-97.

Penrod JD, Pronovost PJ, Livote EE, et al. Meeting standards of high-

quality intensive care unit palliative care: Clinical performance and

predictors. Crit Care Med. 2012;40(4):1105-1112.

Penrod J, Cortez T, Luhrs C. Use of a report card to implement a network-

based palliative care program. J Palliat Med. 2007;10(4):858-860.

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Schenck AP, Rokoske FS, Durham DD, Cagle JG, Hanson LC. The PEACE

Project: Identification of quality measures for hospice and palliative

care. J Palliat Med. 2010;13(12):1451-1459.

Schulman-Green D, Cherlin E, Pace KB, Hennessy M, Crocker PA, Bradley

EH. Experiences of participation in a collaborative to develop

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2011;37(1):38-44.

Seow H, Snyder C, Mularski R et al. A framework for assessing quality

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Smith D, Caragian N, Kazlo E, Bernstein J, Richardson D, Casarett D. Can

we make reports of end-of-life care quality more consumer-focused?

Results of a nationwide quality measurement program. J Palliat Med.

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Sudore R, Casarett D, Smith D, Richardson D, Ersek M. Family

involvement at the end-of-life and receipt of quality care. J Pain

Symptom Manage. 2014;48(6):1108-1116.

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Temkin-Greener H, Li Q, Li Y, Segelman M, Mukamel D. End-of-life care

in nursing homes: From care processes to quality. J Palliat Med.

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academic medical centers. J Palliat Med. 2007;10(1):86-98.

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Quality of Life

Allen L, Gheorghiade M, Reid KJ, et al. Identifying patients hospitalized

with heart failure at risk for unfavorable future quality of life. Circ

Cardiovasc Qual Outcomes. 2011;4(4):379-381.

Balboni TA, Paulk ME, Balboni MJ, et al. Provision of spiritual care to

patients with advanced cancer: Associations with medical care and

quality of life near death. J Clin Oncol. 2010;28(3):445-452.

Baumrucker SJ, Stolick M, Carter GT, et al. Death, dying, and statistics:

Quality measures versus quality of life. Am J Hosp Palliat Care.

2010;27(7):494-499.

Black B, Herr K, Fine P, et al. The relationships among pain, nonpain

symptoms, and quality of life measures in older adults with cancer

receiving hospice care. Pain Med. 2011;12(6):880-889.

Blinderman C, Homel P, Billings JA, Tennstadt S, Portenoy R. Symptom

distress and quality of life in patients with advanced chronic obstructive

pulmonary disease. J Pain Symptom Manage. 2009;38(1):115-123.

Cartwright JC, Miller L, Volpin M. Hospice in assissted living: Promoting

good quality care at end of life. Geron. 2009;49(4):508-516.

Chandran D, Corbin J, Shillam C. An ecological understanding of caregiver

experiences in palliative care. J Soc Work End Life Palliat Care.

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Choi YK. The effect of music and progressive muscle relaxation on anxiety,

fatigue, and quality of life in family caregivers of hospice patients. J

Music Ther. 2010;47(1):53-69.

Dean-Clower E, Doherty-Gilman AM, Keshaviah A, et al. Acupuncture as

palliative therapy for physical symptoms and quality of life for advanced

cancer patients. Integr Cancer Ther. 2010;9(2):158-167.

Guo Q, Jacelon C. An integrative review of dignity in end-of-life care.

Palliat Med. 2014;28(7):931-940. doi:10.1177/0269216314528399.

Hermann CP, Looney SW. Determinants of quality of life in patients near

the end of life: A longitudinal perspective. Oncol Nurs Forum.

2011;38(1):23-31.

Jacobsen J, Kvale E, Rabow M et al. Helping patients with serious illness

live well through the promotion of adaptive coping: A report from the

improving outpatient palliative care (IPAL-OP) initiative. J Palliat Med.

2014;17(4):463-468. doi:10.1089/jpm.2013.0254.

Kamper R, Van Cleve L, Savedra M. Children with advanced cancer:

Responses to a spiritual quality of life interview. J Spec Pediatr Nurs.

2010;15(4):301-306.

Kelemen A, Cagle J, Groninger H. Screening for intimacy concerns in a

palliative care population: Findings from a pilot study. J Palliat Med.

2016;19(10):1102-1105. doi:10.1089/jpm.2016.0092.

Oechsle K, Jensen W, Schmidt T, et al. Physical activity, quality of life, and

the interest in physical exercise programs in patients undergoing

palliative chemotherapy. Support Care Cancer. 2011;19(5):613-619.

Pizzo P. Thoughts about dying in America: Enhancing the impact of one’s

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Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson

HG. Place of death: Correlations with quality of life of patients with

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Research

Henry B, Scales DC. Ethical challenges in conducting research on dying

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Knapp CA. Research in pediatric palliative care: Closing the gap between

what is and what is not known. Am J Hosp Palliat Care. 2009;26(5):392-

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LeBlanc TW, Wheeler JL, Abernethy AP. Research in end-of-life settings:

an ethical inquiry. J Pain Palliat Care Pharmacother. 2010;24(3):244-

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Loke SS, Rau KM. Differences between inpatient hospice care and in-

hospital nonhospice care for cancer patients. Cancer Nurs.

2011;34(3):E21-26.

Morrison RS, Meier DE. The national palliative care research and the center

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Quest TE, Asplin BR, Cairns CB, Hwang U, Pines JM. Research priorities

for palliative and end-of-life care in the emergency setting. Acad Emerg

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Spice R, Palacios M, Biondo PD, Hagen NA. Design and implementation of

an online course on research methods in palliative care: lessons learned.

J Palliat Med. 2011;14(4):413-419.

Sullivan AM, Gadmar NM, Block EM. The project on death in America: A

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Settings of Care

Emergency Department

Allen M. A Child dies in the emergency department: Development of a

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Chan GK. Trajectories of approaching death in the emergency department:

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Grudzen CR, Hwang U, Cohen JA, Fischman M, Morrison RS.

Characteristics of emergency department patients who receive a

palliative care consultation. J Palliat Med. 2012;15(4):396-399.

Grudzen CR, Richardson LD, Morrison M, Cho E, Morrison RS. Palliative

care needs of seriously ill, older adults presenting to the emergency

department. Acad Emerg Med. 2010;17(11):1253-1257.

Lamba S, Nagurka R, Zielinski A, Scott S. Palliative care provision in the

emergency department: Barriers reported by emergency physicians. J

Palliat Med. 2013;16(2):143-147. doi:10.1089/jpm.2012.0402.

Lawson B, Burge F, McIntryre P, Field S, Maxwell D. Can the introduction

of an integrated service model to and existing palliative care service

impact emergency department visits among enrolled patients. J Palliat

Med. 2009;12(3):245-252.

Pines JM, Asplin BR. Conference proceedings-Improving the quality and

efficiency of emergency care across the continuum: A systems approach.

Acad Emerg Med. 2011;18(6):655-661.

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subspecialty, new opportunities. Ann Emerg Med. 2009;54(1):94-102.

Rady MY, Verheijde JL, McGregor JL. Scientific, legal, and ethical

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Smith AK, Fisher J, Schonberg MA, et al. Am I doing the right thing?

Provider perspectives on improving palliative care in the emergency

department. Ann Emerg Med. 2009;54(1):86-93.

Intensive Care Unit

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oncology patients during the final hours of life in the intensive care unit.

AACN Adv Crit Care. 2011;22(4):379-396.

Cooper Z, Rivara FP, Wang J, MacKenzie EJ, Jurkovich GJ. Withdrawal of

life-sustaining therapy in injured patients: Variations between trauma

centers and nontrauma centers. J Trauma. 2009;66(5):1327-1335.

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distress, interventions, and outcomes of intensive care unit cancer

patients referred to a palliative care consult team. Cancer.

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Lamba S, Murphy P, McVicker S, Harris Smith J, Mosenthal A. Changing

end-of-life care practice for liver transplant service patients: Structured

pallaitive care interventions in the surgical intensice care unit. J Pain

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LeGrand SB, Walsh D. Comfort measures: Practical care of the dying

cancer patient. Am J Palliat Care. 2010;27(7):488-493.

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satisfaction with care and quality of dying in the intensive care unit:

Does patient age matter? J Palliat Med. 2011;14(12):1284-1290.

Lin CY, Arnold RM, Lave JR, Angus DC, Barnato AE. Acute care practices

relevant to quality end-of-life care: A survey of Pennsylvania hospitals.

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1 Where indicated, an asterisk symbol was placed at the end of the search

term to broaden the search by finding words that start with the same root

(eg, cultural, culture, cultures, social worker).

Endnote

1 National Consensus Project for Quality Palliative Care. Clinical Practice

Guidelines for Quality Palliative Care, 3rd edition; 2013.

Appendix V: Endorsing and Supporting

Organizations

The National Coalition for Hospice and Palliative Care and the National

Consensus Project for Quality Palliative Care would like to thank the

following organizations who provided endorsement and support for the 4th

edition of the NCP Guidelines.

Endorsing Organizations

Academy of Integrative

Pain Management

Argentum

Academy of Neonatal

Nursing

Ariadne Labs

Accountable Care

Learning

Collaborative

Association for Clinical Pastoral

Education

Accreditation

Commission for

Health Care

Association of Professional Chaplains

Aging Life Care

Association

Association of Rehabilitation Nurses

American Academy of

Home Care Medicine

Blue Shield of California

American Academy of California State University Institute for

Hospice and Palliative

Medicine

Palliative Care

American Academy of

Nursing

Cambia Health Foundation

American Academy of

Pediatrics

Cambia Health Solutions

American Association of

Colleges of Nursing

Catholic Health Association of the

United States

American Association of

Critical Care Nurses

Center for Practical Bioethics

American Association of

Neuroscience Nurses

Center to Advance Palliative Care

American Association of

Nurse Practitioners

Coalition for Compassionate Care of

California

American Board of

Internal Medicine

Coalition to Transform Advanced Care

American Cancer Society College of Pastoral Supervision and

Psychotherapy

American Case

Management

Association

Community Health Accreditation

Partner

American College of

Surgeons

Discern Health

American Health Care

Association

ElevatingHOME & Visiting Nurse

Associations of America

American Heart

Association/American

Stroke Association

Emergency Nurses Association

American Holistic Nurses End of Life Nursing Education

Association Consortium

American Medical Group

Association

Excellus BlueCross BlueShield

American Nephrology

Nurses Association

Family Caregiver Alliance

American Nurses

Association

Gerontological Advanced Practice

Nurses Association

American Psychiatric

Nurses Association

HealthCare Chaplaincy

Network

National Partnership for Women and

Families

Horizon Healthcare

Services, Inc.

National Patient Advocate Foundation

Hospice and Palliative

Nurses Association

National Pediatric Hospice and

Palliative Care Collaborative

Infusion Nurses Society

Institute for Healthcare

Improvement

National POLST Paradigm

International Transplant

Nurses Society

Neshama: Association of Jewish

Chaplains

LeadingAge Northwell Health

Long-Term Quality

Alliance

Nurses Organization of Veterans

Affairs

National Alliance for

Caregiving

Oncology Nurses Society

National Association of

Catholic Chaplains

Physician Assistants in Hospice and

Palliative Medicine

National Association of Respecting Choices

Clinical Nurse

Specialists

National Association of

Home Care and

Hospice

Sigma Theta Tau International Nursing

Honor Society

National Association of

Pediatric Nurse

Practitioners

Social Work Hospice & Palliative Care

Network

National Association of

Social Workers

Society of Palliative Care Pharmacists

National Consumer Voice

for Quality Long-Term

Care

Society for Social Work Leadership in

Health Care

National Hospice and

Palliative Care

Organization

Supportive Care Coalition

National PACE

Association

The Conversation Project

National Palliative Care

Research Center

The National Association of Directors

of Nursing Administration in Long

Term Care

Supporting Organizations*

Alzheimer’s Association LEAD Coalition

American Association of

Colleges of Pharmacy

National Association of

Accountable Care Organizations

American Geriatrics Society National League for Nursing

American Society of The Joint Commission

Hematology

Anthem, Inc.

*Supporting organizations are ones who are supporting the NCP

Guidelines by disseminating to their respective membership and/or

stakeholders; and are unable to provide an official endorsement.

Thank You

To our funders:

Clinical Practice Guidelines for Quality Palliative Care, 4th edition, was

made possible by funding from the Gordon and Betty Moore Foundation

with additional support for the systematic review provided by the:

Gordon and Betty Moore Foundation

Gary and Mary West Foundation

The John A. Hartford Foundation

Stupski Foundation

To the NCP leadership organizations:

The National Coalition for Hospice and Palliative Care also would like to

acknowledge the 16 national organizations who provided the leadership

for the National Consensus Project for Quality Palliative Care:

American Academy of Home Care Medicine

www.aahcm.org

American Academy of Hospice and Palliative Medicine
www.aahpm.org
American Health Care Association
www.ahcancal.org
American Medical Group Association
www.amga.org
Association of Professional Chaplains
www.professionalchaplains.org
Center to Advance Palliative Care
www.capc.org
HealthCare Chaplaincy Network
www.healthcarechaplaincy.org
Hospice and Palliative Nurses Association
www.hpna.org
Long-Term Quality Alliance
www.ltqa.org
National Association for Home Care and Hospice
www.nahc.org
National Hospice and Palliative Care Organization
www.nhpco.org
National Palliative Care Research Center
www.npcrc.org
National Pediatric Hospice and Palliative Care Collaborative
National Quality Forum
www.qualityforum.org

Physician Assistants in Hospice and Palliative Medicine

www.pahpm.org

Social Work Hospice & Palliative Care Network

www.swhpn.org