Mapping Community Palliative Care: Results of a Three-Year National Project

Introduction: Healthcare organizations have begun providing palliative care services in the community to meet the needs of non-hospitalized patients with serious illness. Little information exists on the availability of palliative care services outside the hospital setting. The American Hospital Association’s Annual Survey tracks inpatient palliative care services, but there is no equivalent to identify programs providing care past hospital admission and discharge.

Methods: The Gordon and Betty Moore Foundation provided funding to identify palliative care programs delivering community services. Between August 2017 and July 2019, community palliative care programs were asked to complete a short, online survey identifying themselves and their service locations (patient’s homes, office practices, medical clinics, or long-term care facilities).

Results: Eight hundred and ninety community palliative care programs completed the survey, identifying over 3,000 sites of care. Key findings include:

• Two-thirds of all survey respondents are operated by either a hospital or a hospice organization
• Sixty-five percent of community program respondents report providing in-home palliative care, the largest proportion of any community setting
• Half of community program respondents who report providing in-home palliative care are operated by a hospice organization, with an additional quarter operated by a hospital
• Almost half of community program respondents provide hospital inpatient palliative care in addition to their community services
• Only six percent of community program respondents report providing services specifically to pediatric patients and their families, while an additional 24% will accept referrals for children

Conclusion: This project constitutes the first effort at mapping palliative care services outside of the hospital setting on a national scale. The project findings have increased knowledge of where community palliative care programs exist and whom they serve. Future research should build on this project and integrate information on patient eligibility and volumes, staff capacity, and adherence to national quality recommendations.

Rachael Heitner, MA, CHPCA
Research Manager
Center to Advance Palliative Care
55 West 125th Street, Suite 1302
New York, NY 10027