| Description |
Increasingly, law, ethics, and policy recognize the right of individuals with impaired decisional abilities, including older adults with dementia, to be involved in medical treatment decisions. These shifts are in tension with current practice addressing the decision-making needs of individuals with impaired decisional abilities. In accordance with current practice, surrogates replace individuals as medical decision-makers once a health care provider or court determines that the individual lacks decision-making capacity. The first part of this dissertation examined the history and theory of capacity determination as a component of the doctrine of informed consent to consider whether the current approach to decisional capacity is consistent with the ethical principles of autonomy and beneficence, concluding that the dichotomous structure of the current approach is inconsistent with the ethical principles because it neither offers decision-making support to individuals who may need it, nor includes individuals who remain able to meaningfully participate in their treatment decisions. Next, using Degner's Control Preference Scale as modified by Nolan and colleagues (MCPS), a group of facility-dwelling older adults representing a range of cognitive function were asked to use the MCPS and responses to semistructured interviews to describe their role in a past, and preferred role in a future decision-making encounter. Evidence of validity and reliability was generated by comparing MCPS responses to the responses in a study that excluded individuals with cognitive impairment, by assessing logical and internal consistency within participants' responses, and by using triangulation to evaluate whether narrative responses and MCPS responses were aligned. All three approaches supported the validity and reliability of using the MCPS in the study population. Overwhelmingly, participants expressed a desire to be involved in their own care, with half expressing the desire for shared decision-making with their physicians. The level of involvement desired from the family was less, with one-fourth of the participants selecting a shared role and two-thirds selecting a passive role for the family. There was a shift toward the family when participants were asked how decisions should be made if they were fully unable to participate in a future decision. |
