Background:Even in countries with an opt-out or presumed consent system, relatives have a considerable influence on the post-mortem organ harvesting decision. However, their reflection capacity may be compromised by grief, and they are, therefore, often prone to choose refusal as default option. Quite often, it results in late remorse and dissatisfaction. So, a high-quality reflection support seems critical to enable them to gain a stable position and a long-term peace of mind, and also avoid undue loss of potential grafts. In (...) practice, recent studies have shown that the ethical aspects of reflection are rarely and often poorly discussed with relatives and that no or incomplete guidance is offered. No review of the literature is available to date, although it could be of value to improve the quality of the daily practice.Objectives:The objective was to review and synthesize the main concepts and approaches, theories and practices of ethical reflection support of the relatives or surrogates of potential post-mortem organ donors.Research design:A narrative review was performed in the medical, psychological and ethical fields using PubMed, PsycArticles and Web of Science databases (1980–2020).Results:Out of 150 papers, 25 were finally retained. Four themes were drawn: the moral status of the potential post-mortem organ donor, the principlistic approach with its limits and critics, the narrative approach and the transcendental approach.Discussion:This review suggests an extension of psychological support towards ethical reflection support. The process of helping relatives in their ethical exploration of post-mortem organ donation is psychologically and morally characterized. The need for specialized professionals educated and experienced both in clinical psychology and in health ethics to carry out this task is discussed.Practical impact:This review could contribute to optimize the quality of the ethical reflection support by initiating an evolution from an empirical, partial and individual-dependent support to a more systematized, professionalized and exhaustive support. (shrink)

Nancy Jecker and Andrew Ko (2017) wish to present an account of personal identity which captures what matters to the patient and places the patient at the center of medical decisions. They focus particularly on medical interventions in the brain that can cause drastic changes in personality; under what circumstances should we say the patient has 'survived' these changes? More specifically, how can we best understand the notion of survival in a way that captures what is of concern to the (...) patient? This goal is laudable, however, their chosen account of narrative identity is ill-suited to this task for one reason in particular; it does not give sufficient guidance in predicting which medical decisions are likely to be experienced as disruptive to identity. (shrink)

This discussion aims to give a normative theoretical basis for a “best judgment” model of surrogate decision making rooted in a regulative ideal of love. Currently, there are two basic models of surrogate decision making for incompetent patients: the “substituted judgment” model and the “best interests” model. The former draws on the value of autonomy and responds with respect; the latter draws on the value of welfare and responds with beneficence. It can be difficult to determine which of these two (...) models is more appropriate for a given patient, and both approaches may seem inadequate for a surrogate who loves the patient. The proposed “best judgment” model effectively draws on the values incorporated in each of the traditional standards, but does so because these values are important to someone who loves a patient, since love responds to the patient as the specific person she is. (shrink)

A primary goal of clinical practice is to respect patient autonomy. To promote this goal for patients who have lost the ability to make their own decisions, commentators recommend that surrogates make their treatment decisions based on the substituted judgment standard. This standard is commonly interpreted as directing surrogates to make the decision the patient would have made in the circumstances, if the patient were competent. However, recent commentators have argued that this approach—attempting to make the decision the patient would (...) have made if competent—is theoretically problematic, practically infeasible, and ignores the interests of the patient9s family and loved ones. These commentators conclude that the substituted judgment standard should be revised significantly, or abandoned altogether. While this response would avoid the cited problems, it also would require substantial changes to clinical practice and would raise significant problems of its own. The present paper thus considers the possibility that the criticisms do not point to problems with the substituted judgment standard itself; instead, they point to problems with the way it is most commonly interpreted. This analysis suggests that the substituted judgment standard need not be dramatically revised or abandoned. Instead, it should be interpreted in a way that effectively promotes respect for the autonomy of incompetent patients. The ‘endorsed life’ interpretation described here helps clinicians and surrogates to achieve this important goal. To clarify this approach, we explain how it differs from three other recently proposed alternatives to the standard interpretation of the substituted judgment standard. (shrink)

In W v M and Others (Re M) the Court of Protection considered whether withdrawal of artificial nutrition and hydration was in the best interests of a person in minimally conscious state. The Mental Capacity Act 2005 states that in determining best interests the decision-maker must consider, so far as is reasonably ascertainable, the patient's wishes, feelings, beliefs and values. Baker J. indicated that a high level of specificity is required in order to attribute significant weight to these factors. It (...) is preservation of life which carries substantial weight in the best interests' balance sheet. Could the (prior) values of a patient ever meet the probative standard necessary to offset the weight accorded to preservation of life? Rather than referencing the patient's values to specific circumstances and treatments they could be more effectively considered as part of the patient narrative, how the patient would want her life story to continue/cease. (shrink)

Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better. Respondents in 90 family pairs rank-ordered 47 end-of-life statements as life-story narrative measure and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view and predicted pair’s view. They also scored their confidence in (...) surrogate’s decision-making and familiarity with pair’s healthcare-preferences. Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts and between respondent-surrogate and pair-personal Q-sorts before and after controlling for correlation with respondent-personal scores, and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity. Mean age was 35.4 years, 69% were females, and 73 and 80% reported ≥ very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 and 75% were ≥ familiar with pair’s healthcare-preferences. Mean projection, simulation, and adjusted-simulation correlations were 0.68, 0.42, and 0.26, respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score. There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts and percent agreement on healthcare-outcomes acceptability. Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background. (shrink)

Surrogates’ decisions to withhold or withdraw life-sustaining treatments (LSTs) are pervasive. However, the factors influencing surrogates’ decisions to initiate LSTs are relatively unknown. We present evidence from two experiments indicating that some surrogates’ decisions about when to initiate LSTs can be predictably manipulated. Factors that influence surrogate decisions about LSTs include the patient’s cognitive state, the patient’s age, the percentage of doctors not recommending the initiation of LSTs, the percentage of patients in similar situations not wanting LSTs, and default treatment (...) settings. These results suggest that some people may use heuristics when making these important life-and-death decisions. These findings may have important moral implications for improving surrogate decisions about LSTs and reconsidering paternalism. (shrink)

On a traditional interpretation of the substituted judgement standard a person who makes treatment decisions on behalf of a non-competent patient ought to decide as the patient would have decided had she been competent. I propose an alternative interpretation of SJS in which the surrogate is required to infer what the patient actually thought about these end-of-life decisions. In clarifying SJS it is also important to differentiate the patient's consent and preference. If SJS is part of an autonomy ideal of (...) the sort found in Kantian ethics, consent seems more important than preference. From a utilitarian perspective a preference-based reading of SJS seems natural. I argue that the justification of SJS within a utilitarian framework will boil down to the question whether a non-competent patient can be said to have any surviving preferences. If we give a virtue-ethical justification of SJS the relative importance of consent and preferences depends on which virtue one stresses-respect or care. I argue that SJS might be an independent normative method for extending the patient's autonomy, both from a Kantian and a virtue ethical perspective. (shrink)

What justifies our holding a person morally responsible for some past action? Why am I justified in having a special prudential concern for some future persons and not others? Why do many of us think that maximizing the good within a single life is perfectly acceptable, but maximizing the good across lives is wrong? In these and other normative questions, it looks like any answer we come up with will have to make an essential reference to personal identity. So, for (...) instance, it seems we are justified in holding X responsible for some past action only if X is identical to the person who performed that action. Further, it seems I am justified in my special concern for some future person only if he will be me. Finally, many of us think that while maximization within a life affects only one person, a metaphysical unity, maximization across lives affects many different, metaphysically distinct, persons, and so the latter is wrong insofar as it ignores this fundamental separateness of persons. (shrink)