A Qualitative Inquiry on Palliative and End-of-Life Care Policy Reform

Published in: Journal of Palliative Medicine, v. 9, no. 4, Apr. 1, 2016, p. 400-407

Posted on RAND.org on April 20, 2016

by Hannah C. Schreibeis-Baum, Lea Xenakis, Emily K. Chen, Mark Alan Hanson, Sangeeta C. Ahluwalia, Gery W. Ryan, Karl Lorenz

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Research Question

  1. What would help or hinder the expansion of palliative care?

BACKGROUND: There is increasing recognition of the role of palliative care (PC) in health care delivery, but priorities for state and federal policy to support PC are unclear and have sometimes engendered controversy. We canvassed experts to shed light on general recommendations for improving PC. OBJECTIVE: The study objective was to identify challenges to and potential solutions for promoting, adopting, and implementing policies that would support or expand high-quality PC. METHODS: Semistructured telephone interviews were used to solicit challenges to and potential solutions for promoting, adopting, and implementing policies that would support or expand high-quality PC. Interviews were analyzed using qualitative methods. The subjects were a purposive sample of 22 professional state and federal-level advocates who work in the field of aging and/or PC. RESULTS: Respondents identified four central challenges to advancing PC policies: (1) knowledge about PC in the health care setting, (2) cultural beliefs about PC, (3) payment/reimbursement for PC services, and (4) public understanding of PC. Of the wide range of solutions proposed by respondents, we present the eight most frequently discussed solutions to these challenges targeted towards policymakers, health care professionals, research, and the general public. Respondents' understanding of the relationships between problems and solutions revealed many dependencies and interconnectedness. CONCLUSIONS: A qualitative approach of querying experts identified multiple significant challenges to improving and expanding PC, most of which are acknowledged in existing consensus statements. Proposed solutions were more numerous and diffuse than descriptions of the problems, signaling the need for further consensus building around actionable policy, and better understanding of how to advance a PC policy agenda.

Key Findings

  • The main challenges to broader use of palliative care include lack of knowledge and understanding of palliative care among health professionals and the public, cultural reluctance to face the end of life, and payment for services.
  • Legislative and political action are unlikely to resolve the challenges on their own.
  • Provider training, public awareness initiatives, and payment reforms could help support the use of palliative care.

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