CAHPS End-of-Life Care Survey
The Consumer Assessment of Healthcare Providers and Systems (CAHPS®) End-of-Life Care Survey assesses healthcare experiences in the last month of life, including care experiences across a range of care providers and settings, such as at a doctor’s office or clinic, in a hospital or emergency room, in a hospice facility, at home, in an assisted living facility or nursing home, or by phone or video call. Respondents are informal caregivers of adults who received end-of-life healthcare.
The survey is designed for use by health systems, accountable care organizations, Medicare Advantage plans, or other organizations responsible for providing or paying for end-of-life healthcare.
Get the CAHPS End-of-Life Care Survey
Review the End-of-Life Care Survey—English (PDF, 250 KB).
The ZIP file includes the instrument in English and Spanish.
Users of this survey can consult the following guidance on using CAHPS surveys:
- CAHPS survey design and administration.
- Translating surveys and other materials.
- Analyzing CAHPS survey data.
Quality Measures from the End-of-Life Care Survey
The End-of-Life Care Survey produces the following measures of care experience:
- Getting timely care.
- How well healthcare providers communicate.
- Treating patient with respect.
- Honoring care preferences.
- Getting help for symptoms.
- Getting emotional support
- Overall rating of care in the last month of life.
Development of the CAHPS End-of-Life Care Survey
The CAHPS End-of-Life Care Survey was developed and tested by RAND, with funding from AHRQ.
Key Steps in the Survey Development Process:
- Literature review. The CAHPS research team conducted a literature review and environmental scan to identify existing surveys with relevant content.
- Technical expert panel. In 2018, the team convened a web-based technical expert panel that included representatives from entities that might be held accountable for end-of-life care across settings, such as accountable care organizations and Medicare Advantage plans; payers that might be responsible for overseeing delivery and quality assessments for these entities; settings of care in which end-of-life care is delivered, including nursing homes, hospitals, hospices, and home health agencies; patients and family caregivers; and researchers and survey experts who are familiar with quality measurement in these settings. The panel’s focus was to obtain input on survey content and methods.
- Interviews with family caregivers. The team conducted exploratory qualitative interviews with nine bereaved family caregivers, who represented experiences with a range of care settings. These family caregivers provided input on the topical domains of greatest importance at the end of life.
- Interviews with healthcare providers and quality improvement leaders. To understand perspectives from the provider side, the team interviewed six healthcare providers and quality improvement leaders from healthcare systems and provider organizations across a range of settings and geographic regions. These discussions offered insight into the topical domains and survey administration approaches that would enhance the feasibility of using survey measure data to inform quality improvement for end-of-life care.
- Cognitive testing of the survey with family caregivers. In 2020, the team conducted two rounds of cognitive testing, which included 21 participants. Testing was conducted in English and Spanish to ensure all questions were interpreted as intended. The team obtained input about identifying knowledgeable survey respondents and orienting respondents to which healthcare providers to assess.
- Field test. A field test was conducted in 2022 among caregivers of Kaiser Permanente members who died between July and November 2021. The 488 field test responses were used to refine the survey administration procedures and the questionnaire.
- Development of the final version. The 37-item survey was finalized and approved by AHRQ for the CAHPS trademark in 2024.
