https://orcid.org/0000-0001-7793-2912
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Abstract
Recently, bioethicists and the UNCRPD have advocated for supported medical decision-making on behalf of patients with intellectual disabilities. But what does supported decision-making really entail? One compelling framework is Anita Silvers and Leslie Francis’ mental prosthesis account, which envisions supported decision-making as a process in which trustees act as mere appendages for the patient’s will; the trustee provides the cognitive tools the patient requires to realize her conception of her own good. We argue that supported decision-making would be better understood as a collaborative process, giving patients with intellectual disabilities the opportunity to make decisions in a respectful relationship with trusted others. We offer an alternative account of supported decision-making where the primary constraint is to protect the patient from domination by the trustee. This is advantageous in its preservation of the prospects for genuine collaboration, for the mental prosthesis approach ultimately reinforces a problematic ideal of isolated patient self-determination.
DISCLOSURE STATEMENT
Neither author has any conflict of interest to disclose. The views expressed in the submitted article are the author’s own and do not reflect an official position of their respective institutions.
Notes
1 It should be noted that trustees for patients who have previously been capable of medical decision-making (where the substituted judgment standard is most frequently invoked) are often instructed to disregard the input of a currently incapable patient, in favor of the trustee’s imaginative reconstruction of the patient’s evaluative perspective and the way the current decision at hand might fit in with this perspective.
2 Our discussion is applicable primarily to those IDD patients who are able to engage in kinds of activity that give clear indication of an evaluative perspective. Precisely what forms of activity can provide the basis for judgments about a patient’s evaluative perspective is an important question that any practicable account of supported decision-making will need to address. But it is crucial, from our perspective, that we not assume that the kinds of activity able to form the basis of appropriate judgments about the patient’s evaluative perspective are those the majority of people will comfortably recognize as communicative activity. Thank you to an anonymous reviewer for pressing us to clarify this.
3 We should note that the point here is not that love, care, and familial relations must form the basis of the trustee/patient relationship—although they may and frequently do. Rather, we point to the loving and close relationships that IDD patients enjoy with family and friends as material germane to discerning the patient’s evaluative perspective, even if the patient lacks the abilities traditionally thought necessary for the articulation and application of that evaluative perspective in a decision-making context. Thank you to an anonymous reviewer for pointing this out.
4 Thank you to two anonymous reviewers for raising these as reasonable concerns about the prospect of achieving the outlined approach in the paper.
5 It is not uncommon in the clinical context, for example, for there to be regular and extensive goals of care conversations with surrogate decision-makers where there is disagreement between the team and the family about the appropriate course of action. And it is not uncommon for clinical ethicists to advise in such circumstances that medical professionals attend to the potential burdensomeness of such repeated conversations and to recommend strategies for mitigating those burdens and optimizing conversations with families.