Autonomy and Capacity to Consent in Dementia

Abstract

As the global population ages, the incidence and prevalence of various types of dementia will increase. People with dementia are generally multimorbid and have on average 4–6 major diseases besides dementia (Zubenko, Mulsant, Sweet, Pasternak, & Tu, 1997; Attems, Konig, Huber, Lintner, & Jellinger, 2006). Hence, they are dependent on all sorts of medical treatments. According to generally accepted legal and ethical principles, patients have the right to decide whether or not they wish to accept the offer of a certain treatment. No treatment can be forced upon the patient without the informed consent of a patient who has the capacity to make the decision in question. Medical treatment that is carried out without or on the basis of invalid informed consent may lead to charges of criminal assault or civil battery in the event of bodily harm. One difficulty is that, particularly with regard to patients with a progressive type of dementia, the capacity to consent is always specific to the decision in question – and may change over time depending on context (Katatona et al., 2009). Hence, the attending physician has to assess the capacity to consent of a patient for every single decision for or against a prescribed medical treatment. The problem of how to reliably and validly decide whether a person has the capacity to consent to a specific treatment is not solely a practical problem for the physician, but must be solved interdisciplinarily, by including experts from the fields of (particularly, but not limited to) psychiatry, psychology, law, ethics, sociology, and, in the case of persons with dementia, gerontology and geriatrics (Moye & Marson, 2007). This special issue represents an attempt to integrate these diverse disciplines. The first contribution in this issue studies mental capacity in light of the Convention on the Rights of Persons with Disabilities. Based on the situation in Germany, Thomas Klie and Jorg Leuchtner debate the legal situation in selected other countries (Canada, UK, Spain, and Switzerland). In the second contribution, Jakov Gather and Jochen Vollmann present the clinical case report of a 91-year-old patient with dementia and discuss different aspects in the evaluation of the patient’s will from an ethical point of view. The third contribution presents a substudy that is part of the comprehensive research project EmMa (Promotion of capacity for consent to medical treatment among persons with dementia by means of resource-oriented communication). The EmMa project, funded by the Volkswagen Foundation, aims to enable people with dementia to benefit from their right to self-determination as much as possible. A major step toward achieving this aim was made in the examination of common practice. Mueller, Haberstroh, Knebel, Oswald, and Pantel compare different assessments of capacity to consent to treatment in people with dementia: the initial clinical assessment, the result of the most widely used standardized test for capacity to consent (MacArthur Competence Assessment ToolTreatment; Grisso & Appelbaum, 1998; Appelbaum, 2007), and an interdisciplinary assessment. Results are then discussed from a psychological and a psychiatric point of view. Birgit Panke-Kochinke rounds out this special issue with the sociological perspective. She proposes a decision grid for individualized interventions which promotes the ability of people with dementia to live successfully with their disease. This special issue represents multiand interdisciplinary perspectives on autonomy and the capacity to consent of people with dementia. The hope is to sensitize readers to the problems involved in determining capacity to consent, to the discrimination of people with dementia in questions of self-determination, and to the need for multiand interdisciplinary empirical approaches that promote autonomy in dementia as much as possible and likewise protect the person from harm. According to the UN Convention on the Rights of Persons with Disabilities, the main question should not be whether a person has the capacity to consent, but how we can enable and help the person attain and exercise that autonomy. GeroPsych, 28 (1), 2015, 5–6