Abstract
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.
Highlights
To provide medical care, physicians need to obtain informed consent form their patients
The present paper aims to identify and summarize published instruments of healthcare decision-making capacity
Recent definitions of appreciation propose that this ability implies both the acknowledgment of the medical problem and potential benefits of treatment, and the anticipation of consequences related to the treatment [26, 28]
Summary
Physicians need to obtain informed consent form their patients. This presumption relies on the bioethical principle which stands for people’s right to decide what happens to their own body. Capacity to make healthcare decisions has been generally understood to Grisso and Appelbaum’s [3] model of four abilities. This model describes four functional abilities implied in healthcare decision-making and is based on the legal standards of competence to consent [4]. As for appreciation, it stands for the ability to apply the disclosed information to one’s own problem
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