James Toomey

As older people begin to develop dementia, we confront ethical questions about when and how to intervene in their increasingly compromised decision-making. The prevailing approach in bioethics to tackling this challenge has been to develop theories of “decision-making capacity” based on the same characteristics that entitle the decisions of moral persons to respect in general. This article argues that this way of thinking about the problem has missed the point. Because the disposition of property is an identity-dependent right, what matters in dementia and decision-making is an individual’s personal identity with their prior self, not their moral personhood. Therefore, in considering when and how we ought to intervene in the decision-making of those with dementia, we must look to the philosophy of personal identity rather than personhood.

The Swiss Constitution was amended by referendum in 1992 to include two unique provisions: Article 119, which imposes strict limits on genetic and reproductive technologies in humans in order to protect ‘human dignity’, and Article 120, which commits the Swiss federal government to limiting genetic technologies in non-human species on the basis of the ‘dignity of the creature’. This article analyzes the role of ‘dignity’ as a limit on biotechnologies in the Swiss constitutional order. It concludes that the understanding of dignity the constitution embraces codifies a contestable metaphysical theory of value at the constitutional level. Specifically, the Swiss constitutional concept of dignity embraces the normative theory that the natural order is a source of moral value. Because this theory speaks directly to contested questions of the good life, Switzerland’s adoption of it as a constitutional principle is analogous to the adoption of a religious theory in a constitution. The concept of dignity as understood in the Swiss constitutional order is contrary to the commitment to epistemic humility characteristic of liberal constitutions.

Background: The legal doctrine of capacity, which governs legally-authorized intervention in the decision-making of persons with dementia, has been subject to recent scholarly criticism and reform efforts. Such efforts require a coherent normative theory of when and how intervention in the decision-making of those with dementia is appropriate. This mixed-methods study sought to understand the perspectives of seniors on this normative question. Methods: A survey, including closed- and open-ended questions and conversational interviews, was conducted. Results: Quantitative results of 236 seniors were heterogeneous but showed important patterns. Qualitative results from survey data and interviews of 25 seniors presented 6 key themes: (1) a difficulty of giving concrete answers; (2) reliance on professional opinions; (3) concern for personal identity; (4) fear of abuse; (5) trust of family; and (6) fear of dementia. Conclusions: The study suggests support among seniors for: (1) a model of “supported decision-making” rather than “surrogate decision-making;” (2) a presumption that in order to preclude a person with dementia from making more “personal” decisions a more heightened showing of incapacity is required; and (3) a shift to a model of capacity as based more on features such as long term memory and relationships rather than cognitive functions or values. In reforming our understandings of capacity, ethicists and practitioners will have to navigate tensions found in the qualitative data, including: (1) between participants’ fear of abuse and their expressions of trust in family members to decide when intervention is appropriate; and (2) between expressions of confidence in medical professionals’ ability to tell participants when they are no longer able to make decisions and participants’ own understanding of the question in terms of the philosophical construct of personal identity.