How shared is shared decision-making? A care-ethical view on the role of partner and family

Abstract

The aim of shared decision-making (SDM) is to provide information to patients in order to enable them to decide autonomously and freely about treatment together with the doctor, without interference, force or coercion by others. Relatives may be considered as hindering or impeding a patient's own decision. Qualitative-empirical research into lived experience of SDM of patients with cancer, however, problematises the patient's autonomy when facing terminal illness and the need to make decisions regarding treatment. Confronted with this difficulty, this contribution tries to think through patients' dependency of others, and make their autonomy more relational, drawing on care-ethical critics of a one-sided view of autonomy and on Ricoeur's view of the fundamentally intersubjective, relational self. We aim to conceptualise relatives not as a third party next to the doctor and the patient, but as co-constituents of the patient's identity and as such present in the decision-making process from the outset. What is more, partners and the family may be of inestimable help in retrieving the patient's identity in line with the past, present and possible future.

The involvement of family in the Dutch practice of euthanasia and physician assisted suicide: a systematic mixed studies review

“…Normative conclusions about the involvement of family members in the Dutch practice of EAS would require a thorough examination of ethical arguments on family involvement in medical decision- making and physician assisted dying first, as well as further empirical research as described in the section above. Several scholars have emphasized the moral relevance of family members in medical decision-making, based on the existence of important shared values and interests and the profound influence of family relationships and dynamics on autonomous decision-making and people’s identity [ 17 – 19 , 24 , 110 – 112 ]. One of the major ethical issues is whether the interests of individual patients should always prevail, or that the interests and needs of family members should have equal weight or should at least be acknowledged, especially in end-of-life settings [ 24 , 26 , 113 ].…”

Does shared decision making respect a patient's relational autonomy?

“…For Mackenzie, where there is reason to believe that interpersonal relationships and social structures have impaired or undermined a patient's normative authority, “respect for autonomy involves an obligation to promote autonomy” (p. 514) . Such a position is consistent with the approach adopted by proponents of SDM who claim that clinical decision‐making processes are meant to promote patient autonomy . It follows that if the promotion of a patient's autonomy is a necessary condition of SDM, then the only conception of autonomy that is applicable to SDM contexts is a substantive one.…”

“…Despite the fact that there is general consensus regarding the conditions that constitute the decision‐making process, there is no agreement about who should make the culminating decision in SDM contexts. For certain proponents, a necessary condition of SDM is a voluntary patient decision . A second approach is equally explicit: the decision itself is shared and consists of mutual agreement .…”

“…Proponents of SDM have also distanced themselves from more individualistic approaches to autonomy, arguing that the purpose of SDM is not only to inform patients about viable options and encourage patients to achieve informed preferences, but to respect a capacity of autonomy that is mutually dependent on interpersonal relationships as well as broader health care and social conditions . For example, van Nistelrooij et al have argued that the process of SDM “cannot dismiss the patient's relationality, but needs to seek a way to consider what these relations mean for the patient's identity and hence for his or her decision” (p. 643) . Furthermore, this richer account of respect for autonomy has been affirmed by those who argue that SDM has been clinically motivated, in part, by the perception that it not only respects patient autonomy, but promotes it.…”

“…Elsewhere, Lisa Dive has suggested that SDM calls for processes that enhance a patient's capacity to be autonomous . In order to justify claims such as these, proponents of SDM have invoked relational conceptions of autonomy …”