November 1, 2019.  As the project director for American Academy of Hospice and Palliative Medicine’s (AAHPM’s) Palliative Care Quality Measures Project, I am excited to share with you an update of our accomplishments as we have just completed our first year of this three-year project. I also want to highlight the uniqueness of our measure development process and how this project aims to include the patient, caregiver, and family member voices to ultimately improve the quality of care for patients with serious illness who are receiving palliative care. And, most importantly, I’d like to point out how you can get involved with this important effort.

Palliative Care Quality Measures LOGO


For those not familiar with this project, under the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), the Centers for Medicare and Medicaid Services (CMS) was directed to develop performance measures for clinicians. To meet these requirements, CMS awarded a cooperative agreement to AAHPM with the goal of developing two patient reported outcome performance measures (PRO-PMs) for palliative care in the areas of pain/symptom management and communication (Cooperative Agreement #1V1CMS331639-01-00). The project began in September 2018 and will run for three years.

To fulfill their requirements, AAHPM partnered with the National Coalition of Hospice and Palliative Care (Coalition) and RAND Health (RAND) to establish the Palliative Care Quality Measures Project and develop patient-reported palliative care measures for CMS’s Quality Payment Program (QPP), including the Merit-Based Incentive Payment System (MIPS) and alternative payment models (APMs).

The project will develop and test two patient experience measures assessing core patient-centered and patient-reported outcomes in palliative care:

  • The adequacy and appropriateness of symptom management – particularly pain; and
  • The experience of feeling heard and understood by palliative care providers.


Based on our literature review and expert input, what stood out most were significant gaps and voiced priorities in the palliative care measurement space in the areas of nuanced symptom management, particularly pain, and meaningful communication measures, despite the noted importance of these domains to seriously ill patients and their families. From this, we concluded that patient experience measures focusing on help wanted for pain and feeling heard and understood by palliative care providers would be meaningful and impactful to integrate into MIPS.


While there have been other important measure development contributions to improve the quality of care for patients living with serious illness, one of the unique aspects of this project is our commitment to a truly patient-centered approach to measure development. Science doesn’t always go hand-in-hand with patient input, but this effort strives to value the lived experience of patients, caregivers and family members as much as the experts. Through the partnership and collaboration between AAHPM, Coalition, RAND and other key stakeholders such as the National Patient Advocate Foundation, our commitment together is to:

  • Incorporate patient, caregiver and family input along with clinical and other stakeholder input and feedback throughout the measure development, testing, and implementation of the measures;
  • Shift from a focus on a clinical outcome in quality measurement to a patient-centered outcome that inherently incorporates personal preferences;
  • Ensure dignity, respect, and autonomy in serious illness care;
  • Keep the focus on the patient, first and foremost, while creating cross-cutting measures, applicable broadly to seriously ill patients and their families receiving palliative, primary, and specialty care;
  • Involve persons and families in the care process, whose lived experience demonstrates knowledge, skill, and confidence to self-manage health care, with the potential to improve person-centered care; and
  • Help to assure that patients feel heard and understood as individuals to improve the communicating of prognosis and treatment options and assure adherence to the treatment plan.

Our mantra is simply “for us, by us” meaning, we will create the measures with patient, caregiver, and family input along with essential input from clinical end users from the palliative care field throughout the measure development process.


MACRA Palliative Care Measures Project Team

MACRA Palliative Care Measures Project Team

By the end of year one of the project, with the guidance of our project advisors and our Technical Expert Clinical User Patient Panel (TECUPP), two specific draft measures have been approved by CMS for testing:

  1. Palliative care outpatients’ experience of receiving desired help for painThe percentage of patients aged 18 years and older with at least one outpatient palliative care visit in three months, reporting pain and wanting help for their pain, who report getting the help they wanted for their pain from their palliative care provider and team.
  2. Palliative care outpatients’ experience of feeling heard and understoodThe percentage of patients aged 18 years and older with at least one outpatient palliative care visit in three months, answering a survey question about feeling heard and understood, who report feeling heard and understood by their palliative care provider and team.

RAND began Alpha testing of the measures with five palliative care outpatient sites and has contracts signed with 34 sites (of the 50 sites needed) for Beta testing.

The Coalition is responsible for our project’s stakeholder engagement deliverables because of its central position, leadership expertise, and longstanding relationships with key stakeholders in the palliative care field – including working collaboratively and consistently with leaders from national organizations representing physicians, physician assistants, nurses, social workers, palliative care programs, hospices, researchers, pharmacists, and chaplains (i.e., the core interdisciplinary team [IDT]).  Specifically, the Coalition, in collaboration with the AAHPM project team, was responsible for:

  • April 2019 TECUPP Meeting

    April 2019 TECUPP Meeting

    Convening a Technical Expert Clinical User Patient Panel (TECUPP) and Measure Specification Panel (MSP), a subset of the TECUPP, to support the development and refinement of the proposed measure concepts.

See the TECUPP Membership ListCharter, and Meeting Summary.

See the test site flyer and interest form.

  • Providing opportunities for input and public comment at appropriate intervals throughout the project.

See the handout and hear the recording of the project’s first educational webinar, Measuring Up! New Palliative Care Quality Measures Project, held June 26, 2019.

  • Developing and disseminating a strategic communication plan and resources for sharing information on this project and the specific measures broadly among key audiences.

See the project’s webpage as well as the Coalition’s inaugural bimonthly e-newsletter.

Most importantly, our application for Year Two Funding from CMS to renew our Cooperative Agreement and continue this important work was successful!


  • Sign up to be a test site! All programs that provide outpatient palliative care services to adult patients are invited to submit information for consideration to be a test site.

NOTE: There will be minimal burden on programs who participate in this effort and an honorarium! All data collection and survey activities will be conducted by AAHPM and its contractors. Testing will continue through the Fall 2020.

  • Provide feedback! As the project progresses, results of the measure development testing will be shared through webinars and online feedback.

NOTE: Our official public comment period is slated for January 2021.

  • Be informed! We will continue to provide regular updates over the entire course of this project.

NOTE: To stay current,

⇒Sign up to receive the bimonthly Coalition Edition by emailing;

⇒Follow @Coalitionhpc on Twitter; and

⇒Periodically, check out our project website.

For more information and specific questions, feel free to contact me at


Katherine Ast, MSW, LCSW Director, Quality and Research, AAHPM