Metrics and Measurement in Palliative Care

“If you don’t have the data, it didn’t happen.”
Lynn Spragens, National Palliative Care Expert

This is why CAPC encourages you to collect, analyze, and report your data.

Palliative care success rests on an ability to demonstrate results. Every program should therefore develop a plan for measuring and monitoring program impact. This will ensure the establishment of baseline measurements, as well as the development of systems needed to track the palliative care program’s effect on those measurements over time.

The National Pallative Care Registry™  can help. A joint project of CAPC and the National Palliative Care Research Center (NPCRC), the Registry is building a profile of palliative care teams, operations, and service delivery. Participating programs have access to a variety of custom reports that measure their program's growth year-to-year and assess their program through comparisons with peer programs. Participants also help us analyze trends in the palliative care field. Participation is free and open to all programs across the continuum of care. 

Leveraging Palliative Care Data: Institutional Support

Maria Gatto, Director of Trinity Health, discusses how data can help palliative care programs prove their worth to members of the C-suite of an institution.

Four Categories of Measurement

CAPC recommends:

  1. Operational data (e.g., volume and type of referrals, date of admission/consultation)
  2. Clinical data (e.g., pain and symptom control)
  3. Customer data (e.g., patient, family, and health care provider satisfaction surveys)
  4. Financial data (e.g., billing revenues, cost per day, length of stay)

Data Collection and Palliative Care

Brian Cassel, PhD explains how to leverage palliative care data to demonstrate value.

Creating a Good Measurement and Monitoring System

To create a good measurement and monitoring system, CAPC encourages palliative care teams to:

  • Identify the data elements that are needed/requested by key stakeholders
  • Identify the variables currently collected or stored in existing hospital databases
  • Choose or develop standardized tools to gather information that cannot be obtained from hospital databases
  • Work with an appropriate professional (many programs employ a graduate student or intern for this purpose) to build a database or spreadsheet to store this information
  • Enter and track annual program data through CAPC’s National Palliative Care Registry™.

Measuring What Matters

Measuring What Matters is a consensus recommendation for performance measures for all hospice and palliative care programs to use for program improvement. An initiative of AAHPM and HPNA, the findings and recommendations of the consensus project were published online in the Journal of Pain and Symptom Management.

Learn more about metrics and measurement for palliative care programs. Members can access CAPC Central for all the tools, training, technical assistance, metrics, and expert resources CAPC has to offer. Log in if you're from a member institution. Or to learn more about Membership, call Member Services at 212-201-2674.

NEW! How We Work: Trends and Insights in Hospital Palliative Care

Download the newest Registry publication, a comprehensive profile of hospital palliative care programs participating in the National Palliative Care Registry from 2009 to 2015.


If you need assistance, please use the customer support form.