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)

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)

Surrogate (proxy) decision makers must make research decisions for people with dementia who lack decision-making capacity. Proxies’ decision-making processes are minimally understood. We randomly assigned 82 proxies of AD patients to informed consent for one of three hypothetical protocols with differing levels of risk and benefit. Proxies answered questions about potential benefits of the described research to the patient and society, as well as about whether they would enroll their relative and why or why not. Proxies (...) interested in enrolling their relative cited the potential for direct benefit to their relative, altruism, and trust in researchers. Those declining cited risks, inconvenience, and stage of illness. Proxies weighed numerous factors, incorporating both substituted judgment and best interests standards in their decision-making processes. Although further empirical work is needed to understand the influences on and adequacy of proxies’ decision making regarding research, these findings can help inform policy regarding surrogate consent. (shrink)

Mary Ann Meeker’s article admirably reminds readers that family members are involved in—or “responsively manage”—the care of relatives with severe illness in ways that run considerably beyond the stereotypes at play in many bioethical discussions of advance directives. Her observations thus make thinking about the role of families in healthcare provision more adequate to the facts, and this is an important contribution. There’s reason to be worried, however, that one explicit aim of the article—to ease the standing anxieties that many (...) clinicians and ethicists have about the reliability of family members as proxy decision makers—will be frustrated by its very success. Those already inclined to suspicion may tend to think that the more intricate and pervasive the ways in which families influence the healthcare decision making of their sick, the more chances they have for altering the connection between patients’ interests and the actions of professional providers.To determine whether and when such alterations are something to be concerned about, we’ll need to supplement a better grasp of the pertinent facts with a deeper sense of how human agency works and why we value it. We may also need some reminders about the defensibility of diverse moral understandings. Although both professionals and family members may profess an ethic that sets patients’ interests above those of non-patients—as Meeker’s own results suggest—any strict allegiance to such a framework may be more notional than normative—as her findings also hint. The actual working norms (among professionals, as well as within families) will likely be more complex, but not necessarily any the less defensible for that. (shrink)

We aim to establish the following claim: other factors held constant, the relative weights of the epistemic burdens of competing treatment options serve to determine the options that patient surrogates pursue. Simply put, surrogates confront an incentive, ceteris paribus, to pursue treatment options with respect to which their knowledge is most adequate to the requirements of the case. Regardless of what the patient would choose, options that require more knowledge than the surrogate possesses (or is likely to learn) will either (...) be neglected altogether or deeply discounted in the surrogate’s incentive structure. We establish this claim by arguing that the relation between epistemic burdens and incentives in decision-making is a general feature of surrogate decision-making. After establishing the claim, we draw out some of the implications for surrogate decision-making in medicine and offer philosophical and psychological explanations of the phenomenon. (shrink)

ZusammenfassungIm Gesetzentwurf des Bundesrates zur Änderung des Betreuungsrechts ist eine regelhafte Stellvertretung durch Angehörige für zur Entscheidung unfähige Patienten vorgesehen. Mithilfe eines strukturierten Fragebogens wurden die Einstellungen von Tumorpatienten, gesunden Kontrollpersonen, Pflegenden und Ärzten zur Präferenz der zu bevollmächtigenden Personen ermittelt. Nur 10–20% der Befragten haben eine Patientenverfügung verfasst. Als Entscheidungbefugte im Falle akuter Erkrankung werden Angehörige und Ärzte gemeinsam genannt. Als Gesundheitsbevollmächtigte werden Ehepartner/lebenspartner bevorzugt und nichtangehörige Personen nur von einer Minderheit genannt. Die grundsätzliche Bereitschaft, als Gesundheitsbevollmächtigte Verantwortung zu (...) übernehmen, ist hoch, erstreckt sich jedoch überwiegend auf Angehörige. Nur Ärzte sind in bis zu 50% auch für nichtangehörige Personen bereit, als Bevollmächtigte zu entscheiden. Die regelhafte Stellvertretung in Gesundheitsfragen durch Angehörige entspricht den Wünschen der Mehrheit von Tumorpatienten, gesunden Vergleichspersonen und medizinischem Personal. (shrink)

The number of admissions to hospitals of patients without a proxy decision maker is rising. Very often these patients need fairly immediate medical intervention for which informed consent—or informed refusal—is required. Many have recommended that there be a process in place to make these decisions, and that it include a variety of perspectives. People are particularly wary of relying solely on medical staff to make these decisions. The University Hospitals Case Medical Center recruits community members from its (...) Ethics Committee to serve on a subcommittee, the Patients Without Proxies (PWP) Committee, which works with medical staff during the decision-making process for these patients. Generally, the community members go to the bedside to observe patients. This article looks at how those unused to observing hospitalized patients who are sick and/or dying are affected, comparing them to mock jurors in a research study who are exposed to graphic photographs related to a fabricated crime scene. Judgments made by the mock jurors are affected by viewing such images. The personal experience of witnessing unfamiliar and shocking scenes affects their subsequent judgments. While it may be difficult to tease out whether observing patients causes PWP members to be benefited or harmed, they are affected by what they see. If a variety of perspectives is desirable to reduce possible bias or error, this article argues that at least one community member should refrain from seeing the patient in order to add a different and valuable voice to the decision-making process. Members of the subcommittee base their judgments on the various kinds of information available. Sometimes the things they see, hear, or feel may affect them particularly deeply, and affect their judgments as well. In this article I explore the idea that something like this may be happening in a particular kind of clinical ethics case consultation. (shrink)

To date no one has identified or described the population of incapacitated patients being treated in an inpatient setting who lack proxy decision-makers. Nor, despite repeated calls for protocols to be developed for decision-making, has any institution reported on the utilization of such a protocol. In 2005, our urban tertiary care hospital instituted a protocol utilizing community members of the ethics committee to meet with the medical providers and engage in shared decision-making for patients without proxies. (...) We conducted a retrospective chart review and in this paper describe nearly 200 patients who were identified and treated according to the protocol over a 12 year period. After an aggressive search, family members were located for a surprising number of patients, leaving 80 patients who needed decisions to be made utilizing the PWP committee. We review the decisions required, the results of the shared decision-making meetings, and the patient outcomes. Our experience has shown that a protocol involving community volunteers to make decisions for PWPs in a timely manner is feasible and ethically defensible. The protocol has been accepted by physicians and utilized with increasing frequency. Because it was possible to gather at least minimal information on most patients, a standard of “informed best interest” was used to make decisions. PWP committee recommendations varied, but in all cases agreement was reached with the attending physicians. (shrink)

The Mental Capacity Act 2005 has provided unified scope in the British medical system for proxy consent with regard to medical decisions, in the form of a lasting power of attorney. While the intentions are to increase the autonomous decision making powers of those unable to consent, the author of this paper argues that the whole notion of proxy consent collapses into a paternalistic judgement regarding the other person’s best interests and that the new legislation introduces only (...) an advisor, not a proxy with the moral authority to make treatment decisions on behalf of another. The criticism is threefold. First, there is good empirical evidence that people are poor proxy decision makers as regards accurately representing other people’s desires and wishes, and this is therefore a pragmatically inadequate method of gaining consent. Second, philosophical theory explaining how we represent other people’s thought processes indicates that we are unlikely ever to achieve accurate simulations of others’ wishes in making a proxy decision. Third, even if we could accurately simulate other people’s beliefs and wishes, the current construction of proxy consent in the Mental Capacity Act means that it has no significant ethical authority to match that of autonomous decision making. Instead, it is governed by a professional, paternalistic, best-interests judgement that undermines the intended role of a proxy decision maker. The author argues in favour of clearly adopting the paternalistic best-interests option and viewing the proxy as solely an advisor to the professional medical team in helping make best-interests judgements. (shrink)

Many state laws specify procedures for determining surrogate or proxy decision-makers for end-of-life care in the absence of an advance directive, living will, or other designation. Some laws also set forth criteria that the decision-maker must follow when making medical decisions for an incapacitated patient and determining whether to withdraw life-sustaining treatment. This article provides analysis of a medical ethics case on the question of how to address family allegations that the proxy decision-maker (...) suffers from dementia and is unable to make decisions for the patient. Cases such as this involve interwoven legal and ethical considerations including: how to address concerns that the proxy is making questionable or unreasonable decisions, how to evaluate the proxy's decisional capacity, strategies for enhancing communication, and standards for removing a proxy. This article suggests that “surrogacy ladders” in state law serve not only as a procedural mechanism, but also protect important ethical values such as tiers of moral authority for decision-making, relational autonomy, and privacy. (shrink)

In 2016, the Colorado legislature passed an amendment to Colorado’s medical proxy law that established a process for the appointment of a physician to act as proxy decision maker of last resort for an unrepresented patient (Colorado HB 16-1101: Medical Decisions For Unrepresented Patients). The legislative process brought together a diverse set of stakeholders, not all of whom supported the legislation. Following passage of the statutory amendment, the Colorado Collaborative for Unrepresented Patients (CCUP), a group of (...) advocates responsible for initiating the legislative process, coordinated a unique effort to engage these stakeholders in the creation of a set of voluntary guidelines to assist facilities and individual careproviders in the implementation of policies and procedures enabled by the statute. This article delineates the questions and concerns of stakeholders, describes how those issues were addressed within the guidelines, and proposes additional opportunities for research to assess the impact of the legislation in Colorado. (shrink)

Unrepresented patients are some of the most vulnerable patients encountered in the healthcare system today. One of the challenges associated with healthcare for unrepresented patients is the lack of a standardized legal approach to decision making for this highly vulnerable population. Current statutory approaches vary widely without best practices or consensus guidelines. In 2016, Colorado passed a medical proxy law that established a process for the appointment of an independent physician to serve as a temporary proxy (...) class='Hi'>decision maker for an unrepresented patient. Although this approach helps to identify a decision maker when no proxy is available, the appropriate standards for decision making remain uncertain. A peer-to-peer session at the Clinical Ethics Unconference in 2022 approached this conundrum with a focus on the best interests standard and the appropriate use of patients’ context in decision making. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which (...) decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

Much debate concerning ‘precedent autonomy’ – that is, the authority of former, competent selves to govern the welfare of later, non-competent selves – has assumed a radical discontinuity between selves, and has overlooked the ‘bridging’ role of intimate proxy decision-makers. I consider a recent proposal by Lynn et al. (1999) that presents a provocative alternative, foregrounding an imagined dialogue between the formerly competent patient and her/his trusted others. I consider what standards must be met for such dialogues to (...) have moral force, appealing to narrative and feminist ethics. I then critique the dualistic construction of selves implicit in much of the advance directive literature, noting the continuities of dependence, character, and body, as well as the social dimension of the construction of selves. (shrink)

Purpose The debate about the end-of-life care decision is becoming a serious ethical and legal concern in the Far-Eastern countries of Korea, China and Japan. However, the issues regarding end-of-life care will reflect the cultural background, current medical practices and socioeconomic conditions of the countries, which are different from Western countries and between each other. Understanding the genuine thoughts of patients who are critically ill is the first step in confronting the issues, and a comparative descriptive study of these (...) perspectives was conducted by collaboration between researchers in all three countries. Methods Surveys using self-reporting paper questionnaire forms were conducted from December 2008 to April 2009 in Korea (six hospitals in two regions), China (five hospitals in four regions) and Japan (nine hospitals in one region). The subjects were patients who were critically ill who had been diagnosed as having cancer. A total of 235 participants (Korea, 91; China, 62; Japan, 52) were eventually recruited and statistically analysed. Results Most respondents had sometimes or often thought of their own death, mostly fear of ‘separation from loved ones’. They wanted to hear the news regarding their own condition directly and frankly from the physician. A quarter of them preferred making end-of-life care decisions by themselves, while many respondents favoured a ‘joint decision’ with their family members. The most favoured proxy decision maker was the spouse, followed by the children. Most admitted the necessity of ‘advance directives’ and agreed with artificial ventilation withdrawal in irreversible conditions. The most common reason was ‘artificial prolongation of life is unnecessary’. Most respondents agreed with the concept of active euthanasia; however, significant differences were sometimes observed in the responses according to variables such as patient's country of origin, age, gender and education level. Conclusion Patients in Far-Eastern countries gave various responses regarding end-of-life care decisions. Although familial input is still influential, most patients think of themselves as the major decision maker and accept the necessity of advance directives with Westernization of the society. Artificial ventilation withdrawal and even active euthanasia may be acceptable to them. (shrink)

Out of 288 Hong Kong cancer patients, 92.3% include themselves in decision-making, 71% prefer joint decision-making: with family, with doctor, with doctor plus family, with family minus doctor, and with doctor minus family. <5% want decision-making by “doctor-alone” and <1% desire decision-making by “family-alone”. Harmony, communication and responsibility are reasons for family participation. Most patients prefer “specialist” for information, followed by “family”, “friends”, and “GP”. Trust in doctors and prospects for controlling/curing disease are important factors in (...) decision-making. Patients want to participate and be listened to rather than make decisions. Doctors should not disclose information to family without patients’ permission, nor withhold information from patient [End Page 109] on family’s request. Only 25% of patients have discussed post-competent treatment with others and 7% have heard of Advance Directive ; 24% refuse to discuss it. After AD has been explained to them, 66% remain reluctant to sign one, preferring to leave oral instructions or appoint family as proxy decision-makers. The family’s decision-making role increases when patients become incompetent. The top reason for signing AD is to receive preferred post-competent treatments, and for not signing it, difficulty with making a prospective decision. The implications of these findings will be discussed. (shrink)

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of substitute decision making will (...) be highlighted: (1) Should there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

Despite clear legislative and judicial support, a well established ethical consensus, and increased efforts at information dissemination and education, proxy decision making for incapacitated patients continues to produce moral muddle and poor resolutions in end-of-life care.In her analysis of the proxy-doctor relationship, Nancy Dubler spells out the institutionalized patterns that keep the promise of proxy directives so often unrealized. Facing medically complex care of an incapacitated patient, health care teams are apt to view the proxy (...) as a potentially indecisive or unrealistically demanding decision-maker, less a stand-in for the patient than an interloper whose improper, misguided, or self-interested decisions will work against the patient's best interests. So perceived, proxies are routinely relegated to the edges of care planning discussions, left relatively uninformed and unconsulted, and then suddenly thrust center stage to face decisions they find overwhelming. Confronting such decisions, proxies need support and compassion. What they often find is isolation and distrust, a web of professional and institutional practices that trammel their efforts to understand and execute their role. (shrink)

Collision sports pose a high risk of concussion. How to respond to this risk is more ethically complex when considering children and adolescents due to a) incomplete evidence regarding the impact of concussion on developing brains, b) physiological and social vulnerability, and c) the young person’s reliance on proxy decision-makers, usually parents. There is also a lack of clear definitions of (a) collision sport (vs. contact sport) and (b) what constitutes a child or adolescent. We consider whether parents (...) should be free to allow their children/adolescents to play contact or collision sport. The article analyses the harms and benefits of collision sport and methods of determining risk, before outlining our support for the precautionary principle. We then consider whether the ‘best interests’ or ‘right to an open future’ framework ought to be applied to the issue of childhood participation in collision sport. Rather than supporting a ban of child/adolescent participation in collision sport, we argue that permissibility should be decided on a sport-by-sport basis. Moreover, we apply the ‘Accountability of Reasonableness’ framework to ensure that sound ethical values guide and support protections for this vulnerable group in the absence of high-quality evidence. (shrink)

Society is failing in its moral obligation to improve the standard of healthcare provided to vulnerable populations, such as people who lack decision making capacity, by a misguided paternalism that seeks to protect them by excluding them from medical research. Uncertainties surround the basis on which decisions about research participation is made under dual regulatory regimes, which adds further complexity. Vulnerable individuals’ exclusion from research as a result of such regulation risks condemning such populations to poor quality care as (...) a result of ‘evidence biased’ medicine. This paper explores the research regulation provisions for proxy decision making for those unable to provide informed consent for themselves, and the subsequent legal and practical difficulties for decision-makers. There are two separate regulatory regimes governing research involving adults who lack capacity to consent in England and Wales. The Mental Capacity Act 2005 governs how incapacitated adults can be involved in research, however clinical trials of medicinal products are separately regulated by the Medicines for Human Use Regulations 2004. There are significant differences under these dual regimes in the provisions for those lacking capacity to participate in medical research. The level of risk permitted differs, with a greater requirement for justification for participation in a clinical trial than other types of research. Who acts as proxy decision maker, how much information is provided to the person lacking capacity, and whether they retain the power of veto also significantly differs. The development of two separate regulatory regimes has resulted in significant differences between the provisions for clinical trials and other forms of research, and from usual medical practice. The resulting uncertainty has reinforced the tendency of those approving and conducting research to exclude adults lacking capacity to avoid difficult decisions about seeking consent for their participation. Future developments, such as the incoming EU Regulations, may address some of these differences, however the justification and level of risk permitted requires review to ensure that requirements are appropriate and proportionate to the burdens and risks for the individual, and also to the benefits for the wider population represented. (shrink)

Incompetent patients need to have someone else make decisions on their behalf. According to the Substituted Judgment Standard the surrogate decision maker ought to make the decision that the patient would have made, had he or she been competent. Objections have been raised against this traditional construal of the standard on the grounds that it involves flawed counterfactual reasoning, and amendments have been suggested within the framework of possible worlds semantics. The paper shows that while this approach (...) may circumvent the alleged problem, the way it has so far been elaborated reflects insufficient understanding of the moral underpinnings of the idea of substituted judgment. Proper recognition of these moral underpinnings has potentially far-reaching implications for our normative assumptions about accuracy and objectivity in surrogate decision making. (shrink)

The Mental Capacity Act 2005 came into force in England and Wales in 2007. Its primary purpose is to provide “a statutory framework to empower and protect people who may lack capacity to make some decisions for themselves.” Examples of such people are those with dementia, learning disabilities, mental health problems, and so on. The Act also gives those who currently have capacity a legal framework within which they can make arrangements for a time when they may come to lack (...) it. Toward this end, it allows for them to make advance decisions or to appoint proxy decision makers with lasting powers of attorney. (shrink)

While apparently helpful concepts such as ”best interests“ appear to have the virtue of simplicity, they are really place holders for the communication, time and listening that’s required to understand what truly matters to patients and others involved in healthcare. When we know what matters to a patient, we can have confidence that we have a “legitimate” view of what’s important to them. Two papers in this issue of the Journal of Medical Ethics explore different ways in which values can (...) be legitimised and applied consistently in healthcare. When a patient can no longer say what it is that matters to them and a significant decision needs to be made, the values that will inform what should happen next need to be legitimised in some way. Common ways of doing that include proxy decision makers or advanced directives. In this issue Jacob Appel calls for the ways in which “substituted judgments” are used for patients who have previously expressed a wish to die, to …. (shrink)

This paper advances a novel conception of the child’s best interest in regard to pediatric surgeries that do not promote the preventive or therapeutic health needs of children, or elective pediatric surgeries (EPS). First, children’s capacity for decision-making is examined, and the best decision-making model for EPS is identified as the Best Interest Standard. What follows is a discussion of the interests of children in the context of EPS, the correlation of fundamental interests to rights, and guidelines for (...) weighing children’s competing interests. Next, the rights and duties of parents as proxy decision makers are considered. Finally, a reinterpretation of the Best Interest Standard is proposed, identifying as paramount a child’s ability to make elective medical decisions for herself when she reaches maturity. (shrink)

Background Health and care research involving people who lack capacity to consent requires an alternative decision maker to decide whether they participate or not based on their ‘presumed will’. However, this is often unknown. Advance research planning (ARP) is a process for people who anticipate periods of impaired capacity to prospectively express their preferences about research participation and identify who they wish to be involved in future decisions. This may help to extend individuals’ autonomy by ensuring that (...) class='Hi'>proxy decisions are based on their actual wishes. This qualitative study aimed to explore stakeholders’ views about the acceptability and feasibility of ARP and identify barriers and facilitators to its implementation in the UK. Methods We conducted semi-structured interviews with 27 researchers, practitioners, and members of the public who had participated in a preceding survey. Interviews were conducted remotely between April and November 2023. Data were analysed thematically. Results Participants were supportive of the concept of ARP, with differing amounts of support for the range of possible ARP activities depending on the context. Six main themes were identified: (1) Planting a seed – creating opportunities to initiate/engage with ARP; (2) A missing part of the puzzle – how preferences expressed through ARP could help inform decisions; (3) Finding the sweet spot – optimising the timing of ARP; (4) More than a piece of paper – finding the best mode for recording preferences; (5) Keeping the door open to future opportunities – minimising the risk of unintended consequences; and (6) Navigating with a compass – principles underpinning ARP to ensure safeguarding and help address inequalities. Participants also identified a number of implementation challenges, and proposed facilitative strategies that might overcome them which included embedding advance research planning in existing future planning processes and research-focused activities. Conclusions This study provides a routemap to implementing ARP in the UK to enable people anticipating impaired capacity to express their preferences about research, thus ensuring greater opportunities for inclusion of this under-served group, and addressing the decisional burden experienced by some family members acting as proxies. Development of interventions and guidance to support ARP is needed, with a focus on ensuring accessibility. (shrink)

Economic motivations are key drivers of human behavior. Unfortunately, they are largely overlooked in literature related to medical decisionmaking, particularly with regard to end-of-life care. It is widely understood that the directions of a proxy acting in bad faith can be overridden. But what of cases in which the proxy or surrogate appears to be acting in good faith to effectuate the patient’s values, yet doing so directly serves the decision-maker’s financial interests? Such situations are not (...) uncommon. Many patients care as deeply about economic wellbeing of their families as they do for their own lives and health. This brief work examines three scenarios that raise ethical issues regarding the role of pecuniary motives in making critical medical decisions. Each scenario presents a potential financial conflict of interest between an incapacitated patient and a third-party decision-maker and offers a framework for integrating ethical and legal concerns into clinical care. It is our hope that this work prepares physicians for unexpected ethical conflicts of interest and enables them to further the interests of his or her patients. (shrink)

A psychiatric advance directive (PAD) is a communication tool that promotes patients’ autonomy and gives capacitated adults who live with serious mental illnesses the ability to record their preferences for care and designate a proxy decision maker before a healthcare crisis. Despite a high degree of interest by patients and previous studies that recommend that clinicians facilitate the completion of PADs, the rate of implementation of PADs remains low. Research indicates that many clinicians lack the necessary experience (...) to facilitate the completion of PADs and to use them, and, as a consequence, do not effectively engage patients about PADs. This study developed practical recommendations for clinicians to improve their ability to communicate and facilitate PADs. We (1) thematically analyze definitions of PADs published in 118 articles across disciplines, and (2) present our recommendations for enhanced communication in clinical practice that emphasize patient-centeredness, usefulness, and clarity, aligned with evidence-based practices that put patients’ autonomy and understanding first. While there is no one-sizefits- all script to engage patients in complex conversations, our recommended strategies include an emphasis on patients’ autonomy, the adaptation of word choices, the use of metaphor not simile, and checking for patients’ understanding as effective methods of clinical communication. (shrink)

The article by Professor Baergen and Dr. Woodhouse makes a succinct and serious contribution to progress in bioethical understanding of deciding for others. They begin with what is by now a familiar claim: family proxy decision makers may sometimes make decisions on behalf of incapacitated relatives that depart from what might be optimal from the patient’s point of view, since the well-being of family members, or of the family as such, may be substantially affected by the direction of (...) a patient’s care. They then develop this idea, noting that others apart from family members can also be substantially affected by a patient’s treatment, and arguing that the interests of strangers ought also to sometimes have a role in determining the aims and means of a patient’s treatment.Baergen and Woodhouse also devote attention to how extra-familial interests might be implemented in medical decision making. While I unearth a troubling consequence of the effort to realize their theoretical conclusion practically, my chief task is to point to some disanalogies between families and strangers, and consider the extent to which they call into question the relevance of the interests of strangers to the treatment of patients. (shrink)

Advance directives (ADs), which are also sometimes referred to as ‘living wills’, are statements made by a person that indicate what treatment she should not be given in the event that she is not competent to consent or refuse at the future moment in question. As such, ADs provide a way for patients to make decisions in advance about what treatments they do not want to receive, without doctors having to find proxy decision-makers or having recourse to the (...) doctrine of necessity. While patients can request particular treatments in an AD, only refusals are binding. This paper will examine whether ADs safeguard the autonomy and best interests of the incompetent patient, and whether legislating for the use of ADs is justified, using the specific context of the legal situation in the United Kingdom to illustrate the debate. The issue of whether the law should permit ADs is itself dependent on the issue of whether ADs are ethically justified; thus we must answer a normative question in order to answer the legislative one. It emerges that ADs suffer from two major problems, one related to autonomy and one to consent. First, ADs’ emphasis on precedent autonomy effectively sentences some people who want to live to death. Second, many ADs might not meet the standard criteria for informed refusal of treatment, because they fail on the crucial criterion of sufficient information. Ultimately, it transpires that ADs are typically only appropriate for patients who temporarily lose physical or mental capacity. (shrink)

A basic assumption in current western medicine is that good healthcare involves informed choices. Indeed, making informed choices is not only viewed as “good practice” but a right to which each individual is entitled, a perspective only recently developed in the medical field.Moreover, in the case of ethical decisions, much of the discussion on the role of the family is cast within the autonomy paradigm of contemporary bioethics; that is, family members provide emotional support but do not make decisions for (...) the competent adult patient. The family Is uniformly viewed as an Important proxy decision maker for incompetent patients; but most bioethicists would eschew any decision-making role for the family of mentally competent adult patients. Underlying the discussion of autonomy is the basic assumption in western medicine that good healthcare Involves choices by Informed individuals. (shrink)

This piece discusses perhaps the most agonizing ethical decision ethics consultants and other providers encounter. This is the extent to which providers should defer decisions to patients or to their proxy decision makers as opposed to imposing their own views as to what they think is ethically right. It discusses the most difficult issues these providers may encounter, especially when they wish to depart from authoritative bodies’ standards or guidelines, and it presents initial steps providers may take (...) to help patients and their families work together to resolve these dilemmas more harmoniously. It highlights how providers may inadvertently impose flawed biases on patients and families. Finally, it discusses how providers should take initiative with both parties to offer to help appeal when these avenues already exist and seek to establish the appellate procedures when they are absent. (shrink)

Three ethical principles currently determine both law and practice with respect to starting and stopping dialysis in end stage renal disease cases: Medical Futility, Respect for Life, and Patient Sel-determination. Even where dialysis is not medically futile, patients possessing capacity, and patients lacking capacity but with valid, functioning proxy decision-makers, self-determination is the dominant principle, in that efforts to prolong and preserve life may be set aside or not initiated at the request of the adequately informed patient or (...) the patient’s proxy, both presumed conclusively to be acting in the patient’s own “best interests.” Where the patient lacks capacity and there is no proxy, Respect for Life dominates, and we are required to initiate and continue dialysis that is not medically futile, except where there is available clear and compelling evidence that the patient would not want life prolonged with dialysis, as in an advance directed or documented conversation. This category of patients — those lacking capacity who have given neither advance directives nor designated proxies — constitutes a continuum of cases. “At one extreme is the patient who will actually be harmed by dialysis — that is, the effects of dialysis will cause damage to other functions, or will cause significant increase in pain and suffering that would not occur absent the dialysis. In such situations, it can be said that [initiation of] continuation of dialysis is not medically reasonable,”i or is medically futile. The middle portion is the range of “difficult cases . . . where the therapeutic value of dialysis is.. (shrink)

The patient preference predictor is a computer-based algorithm devised to predict the medical treatment that decisionally incapacitated patients would have preferred. The target paper argues against various criticisms to the effect that the use of a PPP is inconsistent with proper respect for patient autonomy.1 In this commentary, I aim to add some clarifications to the complex relationship between autonomy and the PPP. First, I highlight one way in which the decision of a surrogate designated by the patient realises (...) respect for patient autonomy in a way that PPP cannot realise by introducing the idea of shared agency. Second, I show how the attempt to predict someone’s hypothetical choice can be disrespectful to her autonomy. Following the treatment decision of a surrogate designated by the patient counts as a way of respecting the patient’s own autonomy. Designating someone as one’s surrogate is a case of entrusting her with the task of making important life decisions on one’s behalf. To entrust someone with a certain matter is to assign her the responsibility for that matter based on the trust that she will take a good care of it. When a patient entrusts a surrogate decision-maker, what is the matter that she is trusted to take a good care of? In many contexts, the surrogate is r egarded as an epistemic proxy, one who is likely to know the patient’s preferences the best. It is often thought that the point of practising surrogate decision making is to respect the patient’s autonomy by following what the patient most likely would have preferred. Using a PPP in the decision-making process has the same goal of making a more accurate prediction of the patient’s treatment preference. However, at least in some cases, designating the patient’s intimates or ones she loves and cares …. (shrink)

Existing state surrogate decision-maker laws are fragmented and inconsistent and fail to ensure that all eligible decision makers of the same surrogate priority class are included in the healthcare decisions made for an incapacitated loved one. In this article, we explore three categories of harm that result from failing to include all surrogates of equal priority in a patient’s healthcare decision, namely harms to the patient, harms to the excluded surrogate, and harms to the family. Given (...) these harms, we argue that clinical ethicists have a moral obligation to take reasonable steps to include all surrogate decision makers of equal priority in the healthcare decision-making process for patients without a designated healthcare proxy. (shrink)

According to the Substituted Judgment Standard a surrogate decision maker ought to make the decision that the incompetent patient would have made, had he or she been competent. This standard has received a fair amount of criticism, but the objections raised are often wide of the mark. In this article we discuss three objections based on empirical research, and explain why these do not give us reason to abandon the Substituted Judgment Standard.

Alzheimer’s disease is the most common form of dementia which is estimated to impact 350,000 people over 65 years of age in Canada. The lack of effective treatment and the growing number of people who are expected to be diagnosed with Alzheimer’s disease in the near future are compelling reasons why continued research is in this area is necessary. With additional research, there needs to be greater recognition of the complexity of seeking ongoing informed consent from those with Alzheimer’s disease. (...) This complexity is because the impairment of memory and cognitive ability does not diminish in a linear manner, but rather fluctuates between periods of impairment and relatively normal cognitive lucidness. There is limited discussion in the guidelines of those progressing from early stages of Alzheimer’s disease who have intermittent cognitive function. Guidelines to research and Research Ethics Boards require further development to facilitate researcher including those with Alzheimer’s disease while protecting this growing pool of potential participants. (shrink)

The legal basis of informed consent in Texas may on first examination suggest an unqualified affirmation of persons as the source of authority over themselves. This view of individuals in the practice of informed consent tends to present persons outside of any social context in general and outside of their families in particular. The actual functioning of law and medical practice in Texas, however, is far more complex. This study begins with a brief overview of the roots of Texas law (...) and public policy regarding informed consent. This surface account is then contrasted with examples drawn from the actual functioning of Texas law: Texas legislation regarding out-of-hospital do-not-resuscitate (DNR) orders. As a default approach to medical decision-making when patients lose decisional capacity and have failed to appoint a formal proxy or establish their wishes, this law establishes a defeasible presumption in favor of what the law characterizes as “qualified relatives” who can function as decision-makers for those terminal family members who lose decisional capacity. The study shows how, in the face of a general affirmation of the autonomy of individuals as if they were morally and socially isolated agents, space is nevertheless made for families to choose on behalf of their own members. The result is a multi-tier public morality, one affirming individuals as morally authoritative and the other recognizing the decisional standing of families. (shrink)

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making (...) and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making. Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments. DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system. Trial RegistrationISRCTN89993391. (shrink)

People have understandable concerns over what happens to their bodies, both during their life and after they die. Consent to organ donation is often perceived as an altruistic decision made by individuals prior to their death so that others can benefit from use of their organs once they have died. More recently, live organ donation has also been possible, where an individual chooses to donate an organ or body tissue that will not result in their death (such as a (...) kidney). Although these live organ donations can be purely altruistic, they are usually done to benefit a close family member. An additional complicating factor with both kinds of donation is whether forms of extended decision-making can be used as a means of consent. This is where instructions are issued through some form of advance directive giving specific written instructions as to donation or by appointing a proxy surrogate decision-maker to determine such issues. In the case of deceased donation, there is a question as to whether an advance directive can override the wishes of family members. In the case of live organ donation, there is a largely untested concern as to whether advance directives or surrogates can provide acceptable consent to donation when an individual, though still alive, has lost the capacity to consent for themselves. In this paper, I will focus predominantly on the second of these issues concerning live organ donation and the challenges this poses for donors who have lost capacity to consent. I argue that the limitations on advance directives and surrogate decision-making mean that they can only give us an indication of preference and cannot serve as an authoritative consent where there is any dispute over donation. Instead, in turns out that family members have a significant and usually determinate role to play in these decisions. Although I am focusing on organ donation, the implications for this potentially extend to the use of other tissues and even gametes, which could be used for reproductive purposes. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Moral Distress for the Physician AssistantSharyn L. KurtzMy morning rounds as an inpatient medical oncology physician assistant began as usual. I arrived at the hospital early to receive 7 a.m. sign out from the covering resident. The overnight report began favorably. All patients remained stable. Even my patient, whom I will call Mrs. Walker,* had a quiet night. However, given her tenuous admission presentation, including altered mental status, hypercalcemia (...) (high levels of calcium in the blood), atrial fibrillation with rapid ventricular response (irregular, rapid heart function), widespread metastatic lung cancer, and recent neurosurgery to stabilize her spine, I decided to prioritize Mrs. Walker’s morning evaluation.Examining her medical chart proved reassuring. Her tachycardia (rapid heart rate) had been better controlled over the past two days. Her hypercalcemia had been treated, such that she was no longer somnolent. In fact, she was now arousable, conversant, and able to offer some input regarding her healthcare wishes. However, because she was experiencing intermittent delirium, her husband continued to act as her primary medical decision–maker.As her health care proxy, Mr. Walker had experienced conflict with the medical team during his wife’s prior hospital admission. However, even though Mr. Walker lived greater than 45 minutes from the hospital and was not able to visit regularly, he and I spoke daily by phone, which allowed me the opportunity to offer regular medical updates. Mr. Walker felt overwhelmed with his wife’s condition, but he was comfortable with the care the medical team had provided thus far. He was encouraged by the small improvements we had noted since her hospital admission five days prior.Mr. Walker stated on hospital admission that he wished for DNR/I orders to be placed, since this cohered with his wife’s previously stated wishes. However, he still wanted “everything else done” in terms of treating his wife’s medical conditions, including treatment of her atrial fibrillation, pain, and electrolyte anomalies. Most of all, he hoped Mrs. Walker would soon have increased mobility, which he felt would grant his wife the best quality of life possible. He was adamant that “being active” was what Mrs. Walker wished for, and that she had never wanted to be confined to bed.Mr. Walker’s requests seemed reasonable. Although Mrs. Walker’s lung cancer was widespread, and although many on the medical team felt she would not improve to the point where palliative chemotherapy could be considered, [End Page E13] she had stabilized. Her recent spine surgery had been successful, and she was healing adequately. The neurosurgeons had cleared Mrs. Walker for increased activity out of bed as soon as she could be fitted with a lumbar brace. The pain and palliative care specialists felt that Mrs. Walker’s residual back pain and delirium could be well managed with oral medications.Prior to my entering Mrs. Walker’s room to begin her physical evaluation, I was met by her seasoned nurse, whom I will call Amy. “Sharyn,” Amy warned, “Mrs. Walker’s heart rate is 150 and she is complaining of chest pain.” I entered Mrs. Walker’s room, and she was notably uncomfortable, grasping her chest. The monitor showed that Mrs. Walker’s heart rate was in fact in the 150’s. She was pale, short of breath, and wheezing. “Mrs. Walker,” I asked, “how severe is your chest pain on a scale from 1 to 10?” Mrs. Walker replied, “Nine.” I asked Amy to obtain an EKG, to provide oxygen, and to administer an IV medication that would slow Mrs. Walker’s heart rate. I stepped out of the room to place the computer orders, and I paged my attending physician to let him know about Mrs. Walker’s change in status. After hearing the update, my attending physician, whom I will call Dr. Clark, stated that he agreed with all of my treatment decisions thus far. He was on his way into the hospital. I planned out my next steps with him on the phone and returned to the patient’s room.The monitor gave evidence that Mrs. Walker’s heart rate was improving. Mrs. Walker reported that her pain was now “4 out of... (shrink)

The biblical healings by Jesus and the primitive Church, the liturgical development of the Roman Rite of Exorcism, and the current practice of exorcists reflect a relationship between exorcism and the medical healing arts. Since mutuality characterizes all healer–sufferer interactions, informed consent is a central concept in physician–patient and exorcist–energumen relationships. Informed consent requires adequate information, decision-maker competence, and freedom from coercion. The determination of freedom from coercion is a particular challenge in exorcism, and guidelines for its assess­ment (...) are discussed. While proxy decision making in medical care is generally driven by concerns over competence, foreseeable periods of demonic coercion will necessitate establishing proxies in exorcism. This places a moral duty on the exorcist to establish a substitute decision maker even in cases where the energumen would be considered competent. Discussion of this need through the process of informed consent builds the trust necessary for mutual decision making. (shrink)

Background: The Albanian medical system and Albanian health legislation have adopted a paternalistic position with regard to individual decision making. This reflects the practices of a not-so-remote past when state-run facilities and a totalitarian philosophy of medical care were politically imposed. Because of this history, advance directives concerning treatment refusal and do-not-resuscitate decisions are still extremely uncommon in Albania. Medical teams cannot abstain from intervening even when the patient explicitly and repeatedly solicits therapeutic abstinence. The Albanian law on health (...) care has no provisions regarding limits or withdrawal of treatment. This restricts the individual's healthcare choices.DiscussionThe question of 'medically futile' interventions and pointless life-prolonging treatment has been discussed by several authors. Dutch physicians call such interventions 'medisch zinloos' (senseless), and the Netherlands, as one of the first states to legislate on end-of-life situations, actually regulates such issues through appropriate laws. In contrast, leaving an 'advance directive' is not a viable option for Albanian ailing individuals of advanced age. Verbal requests are provided during periods of mental competence, but unfortunately such instructions are rarely taken seriously, and none of them has ever been upheld in a legal or other official forum.SummaryEnd-of-life decisions, treatment refusal and do-not-resuscitate policies are hazardous options in Albania, from the legal point of view. Complying with them involves significant risk on the part of the physician. Culturally, the application of such instructions is influenced from a mixture of religious beliefs, death coping-behaviors and an immense confusion concerning the role of proxies as decision-makers. Nevertheless, Albanian tradition is familiar with the notion of 'amanet', a sort of living will that mainly deals the property and inheritance issues. Such living wills, verbally transmitted, may in certain cases include advance directives regarding end-of-life decisions of the patient including refusal or termination of futile medical treatments. Since these living wills are never formally and legally validated, their application is impossible and treatment refusal remains still non practicable. Tricks to avoid institutional treatment under desperate conditions are used, aiming to provide legal coverage for medical teams and relatives that in extreme situations comply with the advice of withholding senseless treatment. (shrink)

Euthanasia advocates have recently begun counseling people to create advance directives calling for oral food and water to be withheld if the person reaches a certain stage of dementia. The author shows that these directives are in fact requests for euthanasia, and they leave vulnerable people subject to poor-quality care. Both surrogate decision makers and Catholic institutions have a moral obligation not to implement such directives, and surrogates, rather than withdrawing as proxies, have a moral obligation to advocate for (...) the life and proper care of the incompetent person. Finally, the author argues that society is morally culpable if it does not strongly resist euthanasia in all its forms. National Catholic Bioethics Quarterly 16.3 : 421–434. (shrink)

Eye tracking is used to investigate human choice procedures. We infer from eye movement patterns in choice problems where the deliberation process is clear to deliberations in problems of choice between two lotteries. The results indicate that participants tend to compare prizes and probabilities separately. The data provide little support for the hypothesis that decision makers use an expected utility type of calculation exclusively. This is particularly true when the calculations involved in comparing the lotteries are complicated.

Phytomass cultivation for energy use is increasingly popular in Europe for high profits guaranteed by subsidy. Although public interest in ecology is on an increasing level, direct combustion is still preferred even though scholars have been warning about formations of hazardous compounds for a long-time. However, the reduction of subsidies would negatively affect an already bad situation in Czech agriculture, since most farmers became fully dependent on subsidies due to quotas, restrictions, and other unequal business conditions in European Union. It (...) was proved in a commercial scale that an alternative phytomass energy utilizing technology consisting of steam explosion and subsequent anaerobic fermentation may be run solely on the waste heat without any further addition of chemicals. Behavior analysis of present and future agriculture decision-makers showed that none of the farmers who visited the facility cared about ecological consequences. On the other hand, ost students from the Faculty of Agriculture and the Faculty of the Economy answered the questionnaire with higher environmental responsibility. We assume this is caused by high average age of farmers in Czech Republic who are more aware of the ongoing economical difficulties and perceive differently the risk of higher acquisition costs. (shrink)

The purpose of this study was to investigate the attitudes of decision-makers toward the use of care robots in welfare services. We investigated their knowledge regarding the use of care robots in welfare services as well as their attitudes toward using robots in their own care and in the care of various user groups, for example, children, youths, and older people. We conducted an online survey with a range of Finnish decision-makers as respondents. The respondents were divided into (...) two groups: service actors and research and development actors. The respondents did not regard themselves as having much knowledge about robotics; however, the results showed that the R&D actors had more overall knowledge of the use of robots than the service actors. The R&D actors were found to be more willing to accept a robot as part of their own care as well as part of the care for various user groups. The contribution of this study is a better understanding of the views of the decision-makers who are or will be in charge of the acquisition of technological devices in welfare services. (shrink)

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. (shrink)