Expanding the Palliative Care Domains to Meet the Needs of a Community-Based Supportive Care Model

Abstract

Background: Whole person care is appropriate for seriously ill persons. The current framework of palliative care domains in the National Consensus Project (NCP) Guidelines for Quality Palliative Care offers an opportunity to reassess the domains of care delivered at home, earlier in the course of illness. Objective: This qualitative study was used to test the applicability of a proposed, expanded set of domains. The results were used to inform a home-based, upstream model of supportive care for serious illness. Methods: Quotes relating to the experience of late-life serious illness were derived from transcripts of 12 semi-structured group interviews conducted with patients, family, and professionals. Quotes originally coded to the NCP domains of palliative care were then coded to the proposed domain set, which included new categories of family/caregiver, legal/financial, and legacy/bereavement domains. Results: A total of 489 quotes were assigned to the proposed expanded set of domains. One hundred one (19%) coded to the family/caregiver domain, 28 (5%) to the legacy/bereavement domain, and 27 (5%) to the legal/financial domain. Ninety-seven (87%) of the 111 quotes coded to family/caregiver had been initially coded to the NCP social aspects of care. Family/caregiver themes included challenges, rewards, insights, and family growth. Conclusion: The preponderance of family-related issues suggests that including the family domain may promote recognition and support of family caregivers and the services they provide. Although this study provides some support for including the legacy/bereavement and legal/financial domains, additional research is needed to determine whether there is a basis for including them in the domain structure.