Dying on one's own terms: access to care, timing of death, and effects on family members

Thesis (Ph. D.)--University of Washington, 2004Dying on one's own terms involves coordination across the personal, social, cultural, political, economic, and physical environments of dying persons, their loved ones, and care providers. It is influenced by cultural values, spiritual beliefs, and perceptions of the dying person's illness trajectory. The three papers in this dissertation address different combinations of these contextual factors that affect the feasibility of dying on one's own terms.Paper 1, a secondary analysis of the Medical Expenditure Panel Survey, evaluates policy changes in the Balanced Budget Act of 1997 (BBA 97) on home care utilization at the end of life. Results showed that home care access fell after implementation of the BBA 97. However, those with more functional impairments and less support in the home were both more likely to receive care and receive more days of service.The "Insights into Hastened Deaths" study provided qualitative data for papers 2 and 3. Paper 2 examines the timing and circumstances of hastened deaths. Twenty-six patients hastened their death at different points in time along their trajectory of illness. Those with an estimated prognosis of <1 week were 'dying and done,' having experienced a final functional loss that signaled the end. Those with <1 month were 'dying, but not fast enough.' Those with 1--6 months saw a 'looming crisis' on their horizon that would prohibit following through with their plans. The patients with >6 months were 'not recognized by others as dying, but suffering just the same.'Paper 3 illuminates the critical role of family members who participated in hastened deaths. Although families often felt isolated and ill-prepared for their role, they accepted different levels of responsibility: being present at the death, mixing and administering medications, and implementing back-up plans when complications occurred. The illegal environment created barriers to obtaining quality information, care, and support, leaving families on uncertain legal and moral ground.True choices at the end of life require sophistication, organization and competence by dying persons, families and clinicians. Health care systems, laws and policies must change to promote continuity across settings and to remove barriers that hinder dying on one's own terms