“They know me well enough to decide”: towards a relational ethics for medical decision making when the patient cannot participate.

An advance care plan enables a person to plan for their medical care in the event they are unable to participate in healthcare decision making in the future. The plan may include a written instructional directive and nomination of a surrogate decision maker. Advance care planning is premised on the dominant understanding of decision making when the patient cannot participate as a problem of lost autonomy. This characterisation has its foundations in the principle based approach to bioethics, also known as principlism (Beauchamp and Childress 2009). The principle based account of decision making in incompetence has been criticised on theoretical grounds. Prior empirical research indicated that people may conceptualise the goals of advance care plans and the role of the significant other differently from the way they are presented by principlism. This thesis aimed to explore the way older people, and those they thought would be involved in making decisions should they be unable to participate, understood decision making in incompetence. The non-professional person/s the older people believed would be involved in decision making are termed “significant others.” Relational ethics, particularly feminist and family ethics, provide an alternative image of decision making in incompetence; thus this thesis drew on these theories. This qualitative study involved 25 semi-structured interviews, 19 of these were with older people, aged 65 years or over, who were recruited from six general practices, and six were with significant others recruited via the older people. Data analysis involved the use of two complementary frameworks, the Listening Guide (Gilligan et al. 2006), and moral self-definition as described by Walker (1987) and Hilde Nelson (2001). Through their decision making narratives the older participants indicated that medical decision making was a moral act, and that their understanding of their past decisions was shaped by their decision making approaches and their health related identities. The older people and the significant others’ understandings of decision making when the patient cannot participate was found to be comprised of three threads: documentation, the role of the significant others, and the role of the doctor. The participants’ understanding of these threads occurred along an ethical continuum that ranged from a highly individualised view of decision making at one extreme to a relational view at the other. Many participants conceptualised incompetence as a threat to identity and relationships, best dealt with through the emergent concept of “relational knowing.” The findings suggest that decision making when the patient cannot participate may be better understood as a process of reflection on the patient’s and the family’s story, identity and relationships, rather than as a quest to determine, and enact, their prior preferences. Because principlism obscures the relational aspects of decision making when the patient cannot participate it misses much of what mattered to the participants. Relational ethical theories are able to reveal these concerns and therefore provide the basis for the alternative approach to decision making in incompetence and advance care planning that I have developed. This approach is presented as a series of narrative and relationally derived questions. These questions provide the foundation for an alternative theory and practice of decision making in incompetence.