Decision-Making Capacity in Healthcare: Instruments Review and Reflections About its Assessment in the Elderly with Cognitive Impairment and Dementia

• Published in: Psychiatric quarterly Vol. 93; no. 1; pp. 35 - 53
• Main Authors: Amaral, Ana Saraiva, Afonso, Rosa Marina, Simões, Mário R., Freitas, Sandra
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.03.2022; Springer Nature B.V
• Subjects: Aged; Cognitive ability; Cognitive Dysfunction - diagnosis; Cognitive impairment; Decision Making; Dementia; Dementia - psychology; Dementia disorders; Evaluation; Health care; Health Services Needs and Demand; Humans; Informed consent; Medicine; Medicine & Public Health; Mental Competency - psychology; Neurodegenerative diseases; Normative data; Older people; Patients; Psychiatry; Public Health; Quantitative psychology; Review Article; Sociology; Healthcare decision-making; Mild cognitive impairment; Capacity assessment; Dementia
• ISSN: 0033-2720; 1573-6709
• DOI: 10.1007/s11126-020-09867-7

The prevalence of neurodegenerative diseases has been significantly increasing in the last decades, and it is expected to continue to grow. These health disorders can impair patients’ decision-making capacity in healthcare. The capacity to make healthcare decisions is a fundamental pillar of informed consent, therefore, it should be carefully assessed. Clinicians’ assessment, when not supported by a standardized tool, has revealed to be unreliable, so the recourse to an instrument of capacity assessment is crucial. The present paper aims to identify and summarize published instruments of healthcare decision-making capacity. To do so, a search of peer-reviewed articles in English, Portuguese and Spanish was conducted. A total of eighteen articles, detailing seventeen assessment instruments were selected. Instruments differ on format, structure, assessed abilities and psychometric properties. Likewise, instruments’ targeted population also varies, with a few being specifically developed for patients with dementia. Although a high number of instruments were found, there is still no gold standard for healthcare decision-making capacity assessment. The lack of a gold standard highlights the need for more research in this field, as well as an effort to develop guidelines and normative data, in order to improve clinical practices.