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)

IntroductionExtended decision -making through the use of proxy decision -makers has been enshrined in a range of International Codes, Professional Guidance and Statute,For example, the UK Mental Capacity Act section 9.1; The General Medical Council ; the US National Guardianship Association ; Nuffield Council on Bioethics ; CIOMS-WHO section 6. Court cases such as Re Quinlan in the US have also contributed to establishing the groundings for the legal status of the proxy, albeit in terms of who might be suitable (...) as a proxy in cases where there was no clear appointment of them by a still competent individual. and is now widely seen as a useful means through which we can exercise control over decisions that affect our lives when we have lost capacity to make these decisions for ourselves.I will here limit myself to discussion of proxy consent for adults appointed prior to the loss of competence by the person they are acting as proxy for. The issue of p. (shrink)

Trust is essential in human relationships including those within healthcare. Recent studies have raised concerns about patients’ declining levels of trust. This article will explore the role of trust in decision-making about cardiopulmonary resuscitation (CPR). In this research thirty-three senior doctors, junior doctors and division 1 nurses were interviewed about how decisions are made about providing CPR. Analysis of these interviews identified lack of trust as one cause for poor understanding of treatment decisions and lack of acceptance of medical judgement. (...) Two key implications emerged from the analysis. First, before embarking on a discussion about CPR it is essential to establish trust between the doctor and the patient/family. Secondly, it is essential that the CPR discussion itself does not undermine trust and cause harm to the patient. (shrink)

Where a decision has been made to stop futile treatment of critically ill patients on an intensive care unit – what is termed withdrawal of treatment in the UK – yet no doctor is available to perform the actions of withdrawal, nurses may be called upon to perform key tasks. In this paper I present two moral justifications for this activity by offering answers to two major questions. One is to ask if it can be in patients' best interests for (...) nurses to be the key actors in withdrawal of life‐sustaining treatment. The other is to ask if there is any reason that the nursing profession should not undertake such tasks if this is so. Both these questions require the resolution of weighty moral and philosophical issues. Thus, while offering a serious attempt to provide moral justifications for nurses undertaking withdrawal, this paper also invites debate over both the aim of task division between nurses and doctors, and how we might decide what is in the best interests of patients. (shrink)

NThere are many problems with Levi and Green’s (2010) suggestion that a computer-based decision aid will overcome the major objections to advance directives (ADs). We focus on just two here. First, we argue that the key assumption underlying Levi and Green’s paper, that autonomy always ought to take priority over other values, is false. Second, we argue that the paper misses the point of the most telling objections to the use of ADs: they lack the relevant moral authority to determine (...) treatments. It is not that they are merely subject to a set of contingent problems related to capturing the wishes of individuals or being open to misinterpretation by others.We conclude that the plug should be pulled on Levi and Green’s computer-based proposal. (shrink)

Background: Research involving adults lacking mental capacity relies on the involvement of a proxy or surrogate, although this raises a number of ethical concerns. Empirical studies have examined attitudes towards proxy decision-making, proxies’ authority as decision-makers, decision accuracy, and other relevant factors. However, a comprehensive evidence-based account of proxy decision-making is lacking. This systematic review provides a synthesis of the empirical data reporting the ethical issues surrounding decisions made by research proxies, and the development of a conceptual framework of proxy (...) decision-making for research. Methods: A systematic review was conducted according to PRISMA guidelines. Databases including MEDLINE, EMBASE, and CINAHL were searched using a combination of search terms, and empirical data from eligible studies were retrieved. The review followed the framework synthesis approach to refine and develop a conceptual framework. Results: Thirty-four studies were included in the review. Two dimensions of proxy decision-making emerged. The ethical framing criteria of decision-making used by proxies: use of a substituted judgement, use of a best interests approach, combination of substituted judgement and best interests, and ‘something else’, and the active elements of proxy decision-making: ‘knowing the person’, patient-proxy relationship, accuracy of the decision, and balancing risks, benefits and burdens, and attitudes towards proxy decision-making. Interactions between the framing criteria and the elements of decision-making are complex and contextually-situated. Conclusions: The findings from this systematic review challenge the accepted reductionist account of proxy decision-making. Decision-making by research proxies is highly contextualized and multifactorial in nature. The choice of proxy and the relational features of decision-making play a fundamental role: both in providing the proxy’s authority as decision-maker, and guiding the decision-making process. The conceptual framework describes the relationship between the framing criteria used by the proxy, and the active elements of decision-making. Further work to develop, and empirically test the proposed framework is needed. (shrink)

People in extraordinary situations are vulnerable. As research participants, they are additionally threatened by abuse or exploitation and the possibility of harm through research. To protect people against these threats, informed consent as an instrument of self-determination has been introduced. Self-determination requires autonomous persons, who voluntarily make decisions based on their values and morals. However, in nursing research, this requirement cannot always be met. Advanced age, chronic illness, co-morbidity and frailty are reasons for dependencies. These in turn lead to limited (...) abilities or opportunities for decision-making and self-determination. Exclusion of vulnerable people from research projects would disadvantage them by not covering their needs, which would violate the ethical principles of justice and beneficence. Commonly, vulnerability is attributed to social groups. The consequence for individuals, attributed as belonging to such a vulnerable group, is that the principles of respect for autonomy, justice and beneficence are subordinated to the principle of non-maleficence, understood as avoiding the risk to cause more harm than good. In addition, group-specific attribution could lead to stigmatizing because labelling a person as deviation from a norm violates integrity. For clinical nursing research, the question arises how the protection of vulnerable people could be granted without compromising ethical principles. The concept of relational ethics provides a possible approach. It defines vulnerability as the relation between a person’s health status and the extent to which this person is dependent on the researcher and the research context. Vulnerability is not attributed solely to a person but to a situation, meaning the person is viewed in context. By combining vulnerability as a context-related and situational concept with existing approaches of informed consent, the different ethical principles can be balanced and preserved at every step of the research process. (shrink)

In the face of mounting criticism against advance directives, we describe how a novel, computer-based decision aid addresses some of these important concerns. This decision aid, Making Your Wishes Known: Planning Your Medical Future , translates an individual's values and goals into a meaningful advance directive that explicitly reflects their healthcare wishes and outlines a plan for how they wish to be treated. It does this by (1) educating users about advance care planning; (2) helping individuals identify, clarify, and prioritize (...) factors that influence their decision-making about future medical conditions; (3) explaining common end-of-life medical conditions and life-sustaining treatment; (4) helping users articulate a coherent set of wishes with regard to advance care planning—in the form of an advance directive readily interpretable by physicians; and (5) helping individuals both choose a spokesperson, and prepare to engage family, friends, and health care providers in discussions about advance care planning. (shrink)