Thessa W Thölking, Yvonne Engels, Yvonne Schoon, Els J van Wijngaarden
The meaning of end-of-life healthcare choices of older people with multimorbidity was essentially understood as an ongoing, entangled, existential and relational process, shaped by, yet also transcending, healthcare contexts. This process was characterized by four tensions: (i) the experience of not having a choice, but making decisions nonetheless; (ii) the existential experience and the medical gaze; (iii) the importance of relatives and their limited role in healthcare; and (iv) navigating fragmented healthcare with interrelated conditions.
BACKGROUND AND OBJECTIVES: As the prevalence of multimorbidity among older adults is rising, challenges regarding their end-of-life healthcare choices are increasingly relevant. To address knowledge gaps regarding decision-making, we explored how older adults with multimorbidity, their relatives and involved healthcare professionals experienced end-of-life healthcare choices, how their experiences related to each other and how these choices occurred in interactions between them over time.
RESEARCH DESIGN AND METHODS: We conducted a multiperspective, longitudinal, interview and observation study with a phenomenological and ethnographic approach. We followed nine six-month patient trajectories with eleven relatives and 58 healthcare professionals and conducted 73 observations of patient-healthcare professional interactions and 63 interviews.
RESULTS: The meaning of end-of-life healthcare choices of older people with multimorbidity was essentially understood as an ongoing, entangled, existential and relational process, shaped by, yet also transcending, healthcare contexts. This process was characterized by four tensions: (i) the experience of not having a choice, but making decisions nonetheless; (ii) the existential experience and the medical gaze; (iii) the importance of relatives and their limited role in healthcare; and (iv) navigating fragmented healthcare with interrelated conditions.
DISCUSSION AND IMPLICATIONS: Healthcare professionals' limited insight into patients' and relatives' personal, existential perspectives and relational contexts calls for a better exploration of their lifeworld to ensure the best possible alignment of healthcare decisions with patients' and relatives' needs and values. Older adults with multimorbidity are inadequately supported by fragmented healthcare systems, and efforts to improve this should consider existential, relational and systemic factors.