Balancing perspectives: a critical reflection on autonomy, respect and communication in end-of-life choice-making...

In many Western countries, there is a growing tendency to seek control over death and dying. This leads to a practice in which people anticipate their hypothetical future by a timely explication of their end-of-life choices, such as do-not-resuscitate orders or euthanasia requests. These choices are often presented as individual, autonomous acts, potentially overlooking their relational dimensions. Against this background, this study examined how individual values and understandings of autonomy shape communication around end-of-life choices, and explored whether and how individualistic ideals are articulated, negotiated, or challenged within relational choice-making practices.

A longitudinal, multiperspective, qualitative study was conducted, providing 70 in-depth interviews over two years with community-dwelling older adults (75 + years old) and their close ones. Empirical observations were combined with theoretical insights to investigate how autonomy and communication are enacted in anticipatory end-of-life decision-making and to enrich our conceptual thinking regarding respect for autonomy.

Our findings illustrate that older adults often articulate end-of-life choices as individual decisions, while close ones tend to defer, even when feeling intimately involved or morally responsible. These tensions are intensified when meaningful dialogue is absent or when close ones feel unable to voice their values or concerns, revealing moral frictions between the ideal of individual autonomy and the relational reality of choice-making processes.

Our findings highlight the limitations of framing end-of-life choices primarily as autonomous acts. We argue for a shift toward a more fundamentally relational conception, emphasizing interdependence and dialogue over more common notions of independence and non-interference. This approach may better align with the experiences of older adults and their close ones and provide a foundation for end-of-life care practices and policies that acknowledge and respond to the complexity of end-of-life decision-making.