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.

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

“…46,47,70,74 Therefore, as with other elements of planning and providing palliative care, it is important to assess the legacy interests, goals, and preferences of patients and their families to truly individualize all domains of the care experience. 51,52,54,61 The results of this systematic review also suggest that legacy interventions may be an effective means of psychosocial support for children and adults with serious or terminal illness and their family members, as has been anecdotally suggested over work spanning the 21st century. 5,34,39,[45][46][47][48]70,71,74 To date, it appears that some specific legacy interventions have been associated with decreases in symptom-related distress, 71 emotional symptoms, 5 and depression.…”

What defines the comprehensive assessment of needs in palliative care? An integrative systematic review

“…49,50 Taken together, psychological and spiritual issues and especially talking about death and dying is important to explore in an assessment, and perhaps even in early encounters with the palliative care team. As palliative care evolves to be offered at earlier stages of the disease 8 there will be more needs to assess the psychosocial-spiritual impact of being at the end of life, not just the illness experience.…”

“…5,6 Yet there is no agreed upon standard among palliative care working groups regarding what areas of need are relevant to a comprehensive assessment. 7,8 Some have suggested further areas of need to include are legal and financial, legacy and bereavement, 8 whereas others recognize environmental, sexual and cultural. 7 This could be a reason that patients in palliative care have reported a high prevalence and wide range of unmet needs, 9 which are related with emotional distress and a higher economic impact.…”

An Interdisciplinary Framework for Palliative and Hospice Education and Practice

“…The framework is iterative and invites professional reflection but holds caring as its basic principle. Inspired by figures and ideas shared by Reed (2010) and Anderson et al (2018), the conceptual framework provides a holistic and relational view that honors the interdisciplinary journey of personal health and illness within a palliative and hospice care perspective. Transformation is recognized; therefore, curing or fixing are not the ultimate aims.…”