Abstract:In medical ethics, there is a well‐established debate about the authority of advance directives over people living with dementia, a dispute often cast as a clash between two principles: respecting autonomy and beneficence toward patients. In this article, I argue that there need be only one principle in substitute decision‐making: determining authenticity. This principle favors a substituted judgment standard in all cases and instructs decision‐makers to determine what the patient would authentically prefer to… Show more
“…When the individual retains the capacity to express their values, this process could involve the surrogate and individual discussing the individual's values and helping to realize them. 29 In some cases, this may involve redirecting the individual: …from unattainable goals to more realistic ones that align with their values, helping a beneficiary to more fully imagine and assess possible outcomes according to their impact on what the beneficiary values. If the individual is not able to understand the study, and there is no evidence that participation is contrary to their preferences and values, the legally authorized representative should be permitted to enroll them in research that offers a prospect of participant benefit and research that poses minimal risk.…”
Section: Methodsmentioning
confidence: 99%
“…When the individual retains the capacity to express their values, this process could involve the surrogate and individual discussing the individual's values and helping to realize them 29 . In some cases, this may involve redirecting the individual:…from unattainable goals to more realistic ones that align with their values, helping a beneficiary to more fully imagine and assess possible outcomes according to their impact on what the beneficiary values 30 …”
Key points
Current practice relies on surrogates to make research decisions for adults who have cognitive or intellectual disabilities.
A number of commentators argue that this practice should be replaced with ‘supported’ decision‐making.
The present manuscript considers three way to implement supported decision‐making in the context of clinical research.
We argue that using supported decision‐making to enhance authenticity has the greatest potential to respect and protect adults who have cognitive and intellectual disabilities.
“…When the individual retains the capacity to express their values, this process could involve the surrogate and individual discussing the individual's values and helping to realize them. 29 In some cases, this may involve redirecting the individual: …from unattainable goals to more realistic ones that align with their values, helping a beneficiary to more fully imagine and assess possible outcomes according to their impact on what the beneficiary values. If the individual is not able to understand the study, and there is no evidence that participation is contrary to their preferences and values, the legally authorized representative should be permitted to enroll them in research that offers a prospect of participant benefit and research that poses minimal risk.…”
Section: Methodsmentioning
confidence: 99%
“…When the individual retains the capacity to express their values, this process could involve the surrogate and individual discussing the individual's values and helping to realize them 29 . In some cases, this may involve redirecting the individual:…from unattainable goals to more realistic ones that align with their values, helping a beneficiary to more fully imagine and assess possible outcomes according to their impact on what the beneficiary values 30 …”
Key points
Current practice relies on surrogates to make research decisions for adults who have cognitive or intellectual disabilities.
A number of commentators argue that this practice should be replaced with ‘supported’ decision‐making.
The present manuscript considers three way to implement supported decision‐making in the context of clinical research.
We argue that using supported decision‐making to enhance authenticity has the greatest potential to respect and protect adults who have cognitive and intellectual disabilities.
“…Here, authenticity is viewed as the moral ideal of being ‘true to oneself’, although this is understood as being socio-culturally constituted and developed in dialogue with others, and the creation of a cohesive narrative [ 10 ]. Although others reject the reliance on narrative cohesion and argue that authenticity may also take into account the present-day settled preferences of people with impaired capacity, not just their past decisions [ 11 ]. This recognition of the importance of authenticity as the aim of proxy decision-making suggests that rather than pursuing accuracy-enhancing interventions to improve proxy decisions, or abandoning the involvement of proxies altogether, drawing on concepts identified in the considerable body of research into improving and supporting decision-making may be a more useful focus.…”
People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes ‘good’ proxy decision-making for research has remained unexplored. Interventions are needed to improve and support proxy decision-making for research but are hampered by a lack of understanding about what constitutes decision quality in this context. A global increase in conditions associated with cognitive impairment such as dementia has led to an urgent need for more research into these conditions. The COVID-19 pandemic and subsequent necessity to conduct research with large numbers of critically ill patients has made this need even more pressing. Much of the empirical research centres on the desire to improve decision accuracy, despite growing evidence that authenticity is more reflective of the aim of proxy decisions and concerns about the methodological flaws in authenticity-focused studies. Such studies also fail to take account of the impact of decision-making on proxies, or the considerable body of research on improving the quality of healthcare decisions. This paper reports a concept synthesis of the literature that was conducted to develop the first conceptualisation of ‘good’ proxy decisions about research participation. Elements of decision quality were identified across three stages of decision-making: proxy preparedness for decision-making which includes knowledge and understanding, and values clarification and preference elicitation; the role of uncertainty, decisional conflict, satisfaction and regret in the decision-making process; and preference linked outcomes and their effect. This conceptualisation provides an essential first step towards the future development of interventions to enhance the quality of proxy decision-making and ensure proxy decisions represent patients’ values and preferences.
“…Some propose to address these shortcomings by modifying current practice to make decisions based on the patient's personal commitments, even when doing so ignores their advance directive. 5 Others endorse permitting the patient's family to make decisions for the patient as they see fit. Proposals that emphasize substituted judgment recommend supple-menting current practice with artificial intelligencebased algorithms that help predict the treatment the patient would have chosen.…”
mentioning
confidence: 99%
“…Some propose to address these shortcomings by modifying current practice to make decisions based on the patient’s personal commitments, even when doing so ignores their advance directive . Others endorse permitting the patient’s family to make decisions for the patient as they see fit.…”
The process of making medical decisions used to be straightforward. Clinicians selected the treatment course they determined would best promote the patient's interests. More recently, in response to increased emphasis on individual autonomy, it is the patient, in consultation with their clinicians and loved ones, who makes medical decisions. This approach respects patients who are able to make their own treatment decisions. However, it poses a challenge for the many adult patients who are unable to understand the information relevant to the decision in question, reason in light of this information and their own values, make a voluntary decision on this basis, or communicate their decision.To respect these patients who lack decisionmaking capacity, current practice directs patientdesignated and next-of-kin surrogates to make medical decisions based on the patient's documented preferences (eg, as described in an advance directive). 1 When a patient does not document their preferences, surrogates are instructed to use substituted judgment, trying to make the decision the patient would have made for themselves. When this is unclear, surrogates attempt to promote the patient's best interests. 1 Current implementation of this approach is subject to several important shortcomings. 2 First, many patients do not complete an advance directive or otherwise document their preferences prospectively. 3
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