Doctor of Philosophy

dissertationIncreasingly, 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

Étude des besoins décisionnels des aînés atteints de la maladie d'Alzheimer et de leurs proches aidants pour favoriser la prise de décision partagée en soins de première ligne

L'objectif de cette étude était d'évaluer les besoins décisionnels et de prioriser cinq décisions difficiles et fréquentes des aînés atteints de la maladie d'Alzheimer (MA) et leurs proches pour développer un programme de formation axé sur la décision partagée combiné avec des outils d'aide à la décision. Un sondage électronique de type Delphi avec 33 experts a permis d'établir un consensus sur cinq décisions. Les résultats concernent la décision des proches de recourir à une intervention de soutien (sélectionné par 83% des experts), la décision de recourir à des interventions pour réduire l'agitation, l'agressivité et les symptômes psychotiques (79%), déterminer l'objectif des soins chez les aînés atteints de la MA au stade avancé (66%), arrêter ou non la conduite automobile (66%) et établir ou non un régime de protection (62%). L'identification de ces besoins décisionnels médicaux et psychosociaux pourra aiguiller différentes parties prenantes dans le développement d'interventions pour faciliter la prise de décision. Mots clés : maladie d'Alzheimer, proches aidants, soins de première ligne, décision partagée, analyse de besoins, méthode Delph

Development and pilot testing of a decision aid for drivers with dementia

Background: An increasing number of older adults drive automobiles. Given that the prevalence of dementia is rising, it is necessary to address the issue of driving retirement. The purpose of this study is to evaluate how a self-administered decision aid contributed to decision making about driving retirement by individuals living with dementia. The primary outcome measure in this study was decisional conflict. Knowledge, decision, satisfaction with decision, booklet use and booklet acceptability were the secondary outcome measures. Methods: A mixed methods approach was adopted. Drivers with dementia were recruited from an Aged Care clinic and a Primary Care center in NSW, Australia. Telephone surveys were conducted before and after participants read the decision aid. Results: Twelve participants were recruited (mean age 75, SD 6.7). The primary outcome measure, decisional conflict, improved following use of the decision aid. Most participants felt that the decision aid: (i) was balanced; (ii) presented information well; and (iii) helped them decide about driving. In addition, mean knowledge scores improved after booklet use. Conclusions: This decision aid shows promise as an acceptable, useful and low-cost tool for drivers with dementia. A self-administered decision aid can be used to assist individuals with dementia decide about driving retirement. A randomized controlled trial is underway to evaluate the effectiveness of the tool

Development and pilot testing of a decision aid for drivers with dementia

Background An increasing number of older adults drive automobiles. Given that the prevalence of dementia is rising, it is necessary to address the issue of driving retirement. The purpose of this study is to evaluate how a self-administered decision aid contributed to decision making about driving retirement by individuals living with dementia. The primary outcome measure in this study was decisional conflict. Knowledge, decision, satisfaction with decision, booklet use and booklet acceptability were the secondary outcome measures. Methods A mixed methods approach was adopted. Drivers with dementia were recruited from an Aged Care clinic and a Primary Care center in NSW, Australia. Telephone surveys were conducted before and after participants read the decision aid. Results Twelve participants were recruited (mean age 75, SD 6.7). The primary outcome measure, decisional conflict, improved following use of the decision aid. Most participants felt that the decision aid: (i) was balanced; (ii) presented information well; and (iii) helped them decide about driving. In addition, mean knowledge scores improved after booklet use. Conclusions This decision aid shows promise as an acceptable, useful and low-cost tool for drivers with dementia. A self-administered decision aid can be used to assist individuals with dementia decide about driving retirement. A randomized controlled trial is underway to evaluate the effectiveness of the tool

Deciding about research for others: normative, empirical, and legal accounts of proxy decision-making for research and the development of a decision support intervention

Research involving adults who lack capacity to consent, and who therefore require alternative decision-makers, encounters a number of ethical, legal, and practical challenges. Legal frameworks in the UK require proxy or surrogate decision-makers to make decisions based on what the person’s own wishes and feelings would be. However, this may be difficult to determine or can be unknown. The aim of this thesis was to explore the ethical basis of proxy decision-making, how decisions are made in practice, and the support needs of families acting as proxies. This thesis examined the context within which decisions are made through systematic reviews of current evidence and normative literature, and empirical research undertaken to address the evidence gaps identified using survey and content analysis methods. A qualitative study explored proxies’ experiences and established their decision support needs. The findings show that proxy decisions are contextually dependent in practice, founded on relationality and trust, with proxies aiming for authenticity rather than accuracy. Current legal frameworks and ethical accounts do not reflect the duality of the proxy’s role and their obligations to both represent the person’s preferences and interests. An alternative account of proxy decision-making is proposed which moves away from an autonomy and consentbased paradigm, and towards an approach centred on respect for persons. Some family members acting as proxy experience an emotional and decisional burden and may benefit from decision support. A complex intervention was developed to support informed decision-making, which focuses on the proxy using their relationship and knowledge of the person’s own values and preferences. This thesis extends ethical understandings about the basis for proxy decisions for research, identifies areas of divergence from the legal frameworks, contributes new empirical evidence about real world decision-making, and provides a mechanism by which family members can be supported when faced with often difficult decisions