The rise in the recent Western pattern of surrogate decision making is not a necessary result of an increase in the number of elderly with decreased competence; it may rather manifest the dominant Western vision of human life and relations. From a comparative philosophical standpoint, the Western pattern of medical decision making is individualistic, while the Chinese is familistic. These two distinct patterns may reflect two different comprehensive perspectives on human life and relations, disclosing a foundational difference that can (...) be seen in the Aristotelian account of friendship and the Confucian account of humanity. The contemporary development of surrogate decision making in the West may illustrate a general tendency toward the Aristotelian account, while the Chinese approaches are congruent with the Confucian view. Also explored are some merits of the Chinese approach to family decision making for health care. (shrink)

The computer revolution has had an enormous effect on all aspects of the practice of medicine, yet little thought has been given to the role of social media in identifying treatment choices for incompetent patients. We are currently living in the ?Internet age? and many people have integrated social media into all aspects of their lives. As use becomes more prevalent, and as users age, social media are more likely to be viewed as a source of information regarding medical care (...) preferences. This article explores the ethical and legal issues raised by the use of social media in surrogate decision making. (shrink)

Patients can be harmed by a religiously motivated surrogate decision maker whose decisions are contrary to the standard of care; therefore, surrogate decision making should be held to a high standard. Stewart Eskew and Christopher Meyers proposed a two-part rule for deciding which religiously based decisions to honor: (1) a secular reason condition and (2) a rationality condition. The second condition is based on a coherence theory of rationality, which they claim is accessible, generous, and culturally (...) sensitive. In this article, I will propose strengthening the rationality condition by grounding it in a theory of intellectual virtue, which is both rigorous and culturally sensitive. (shrink)

How shall we decide for others who cannot decide for themselves? And who—or what, in the case of artificial intelligence — should make the decision? The present issue of the journal tackles several interrelated topics, many of them having to do with surrogate decision making. For example, the feature article by Jardas et al 1 explores the potential use of artificial intelligence to predict incapacitated patients’ likely treatment preferences based on their sociodemographic characteristics, raising questions about the means by (...) which we come to decide for others. And a clinical ethics round table led by Wilkinson and Pillay2 examines the case of a premature baby on life support whose primary surrogate is herself incapacitated. Together, these examples force us to think more deeply about the meaning and significance of taken-for-granted concepts: respect for autonomy, substituted judgement, best interests. We’ll consider the baby first and then turn to AI. “Baby T” is a critically ill newborn delivered prematurely by emergency caesarean section. The mother had entered into a surrogacy arrangement with a same-sex male couple, the intended parents, who were to take over the baby’s care after birth—just as soon as a formal parental order could be obtained through the court. Until then, the birth mother, who had used her own eggs to conceive Baby T along with sperm from an unidentified donor, would have legal and ethical responsibility to decide about the baby’s care. Unfortunately, she too was in critical condition, having fallen unconscious prior to delivery due to a sudden brain haemorrhage. She remained unconscious, and thus incapacitated, during a crucial period in which time-sensitive decisions about Baby T’s care needed to be made, including whether to continue life support. Given the mother’s incapacity, who should …. (shrink)

This essay explores the preferences, anticipations and expectations of the elderly regarding the role of family members in making health care decisions for them should they become decisionally incapacitated. Findings are presented from a series of in-depth interviews of men and women aged 67–91 years. Following a discussion of the uncertain legal status of familial surrogate decision-making, we argue that the family unit's autonomy is sufficient to justify the elderly's preferred reliance on their own family. Further, we suggest (...) that social and legal policy changes should facilitate, rather than impede, familial decision-making. (shrink)

As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-growing number of patients will require surrogate decision-makers. While advance care planning by patients still capable of expressing their preferences about medical interventions and end-of-life care can improve the quality and accuracy of surrogate decisions, this is often not the case, not infrequently leading (...) to demands for ineffective, inappropriate and prolonged interventions. In 1980 LaFollette called for the licensing of prospective parents, basing his argument on the harm they can do to vulnerable people. In this paper, I apply his arguments to surrogate decision-makers for cognitively incapacitated patients, rhetorically suggesting that we require potential surrogates to qualify for this position by demonstrating their ability to make reasonable and rational decisions for others. I employ this theoretical approach to argue that the loose criteria by which we authorize surrogates’ generally unchallenged power should be reconsidered. (shrink)

The family is the exemplar community of Chinese society. This essay explores how Chinese communitarian norms, expressed in thick commitments to the authority and autonomy of the family, are central to contemporary Chinese bioethics. In particular, it focuses on the issue of surrogate decision making to illustrate the Confucian family-grounded communitarian bioethics. The essay first describes the way in which the family, in Chinese bioethics, functions as a whole to provide consent for significant medical and surgical interventions when a (...) patient has lost decision-making capacity. It is argued that the practice of not having an established order for surrogate decision makers (e.g., spouse, children, and then parents), as it is done in the United States, reflects the acknowledgment that the family as a social reality cannot be reduced to a stereotype of the appropriate order of default decision makers. This description of the family as being in authority to make surrogate decisions for an incompetent family member is enriched by an elaboration of the differences among the concepts of patient autonomy, family autonomy, and moral autonomy. The Chinese model, as well as the Confucian communitarian life of families, engages a family autonomy that is supported by a Confucian understanding of moral autonomy, rather than individual autonomy. Finally, the issue of possible conflicts between patient and family interests in relation to a patient’s past wishes in the Chinese model is addressed in light of the role of the physician. (shrink)

German legislation demands that decisions about the treatment of mentally incompetent patients require an ‘informed consent’. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of (...) the person under his/her care. This includes ‘end-of-life decisions’. Deviations from this procedure are only allowed in acute emergencies or cases of ‘medical futility’. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical ‘end of life-decisions’ and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like• the assessment of mental competence• the options for exercising patient self-determination via advance directives and durable powers of attorney• the improvement of palliative care facilities,• the clarification of formal procedures for surrogate decision-making in health care and towards the end of life• and the possibilities and their limitations of controlling these decision-making processes ‘externally’ (e.g., by Guardianship Courts or committees).The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction and the European traditions of philosophy of health care and bioethics. (shrink)

The case states that a male same-sex couple entered into a surrogacy arrangement with an unrelated surrogate using donor sperm and the surrogate’s eggs. M is the legal mother pursuant to s33 of the Human Fertilisation and Embryology Act 2008. Though the facts tell us that there was no legally binding arrangement, this is in fact the position of the law: under s1A Surrogacy Arrangements Act, no surrogacy arrangements can ever be binding on the parties. It is not (...) clear whether the donor sperm is from one of the same-sex couple or not. If it was donor sperm and not from either intended father, this is not an arrangement that would be recognised in law, as one of the men must be genetically related to the child in order for them to obtain legal parenthood via a parental order, under s54 HFEA 2008. They could apply to adopt the child, although they may fall foul of adoption legislation1 if any money has moved between them and M and they do not fall within an exemption.2 In any event, an adoption cannot be achieved in time for them to obtain legal parenthood in a crisis situation. In the absence of a biological connection and the resulting legal parenthood, in order to obtain parental responsibility for the child to allow them to make decisions about Baby T’s care, the men would need to apply for leave to apply for a child arrangements order pursuant to s10 Children Act 1989. However, in the …. (shrink)

In this commentary on a clinical ethics case pertaining to a same-sex couple that does not have explicit surrogate decision-making or hospital-visitation rights (in the face of objections from the family-of-origin of one of the queer partners), the authors invoke contemporary legal and policy standards on LGBTQ health care in the United States and abroad. Given this historical moment in which some clinical rights are guaranteed for LGBTQ families whilst others are in transition, the authors advocate for the implementation (...) of clinical ethics mediation as the soundest and most humane form of resolution in matters where there is a dispute between family members about an incapacitated loved one. They argue that clinical ethics mediation is an ideal alternative solution because it works toward consensus about outcome, even where consensus about values is not achievable. (shrink)

Care of the critically ill newborn includes support for the birth mother/parents with regular updates around the clinical condition of the baby, and involvement in discussions around complex decision-making issues. Discussions around continuation or discontinuation of life-sustaining are challenging even in the most straightforward of cases, but what happens when the birth mother is critically unwell? Such cases can lead to uncertainty around who should assume the parental role for these difficult discussions. In this round table discussion, we explore the (...) ethical, moral and legal uncertainties raised by coincident severe maternal and neonatal illness in the context of surrogacy. (shrink)

BackgroundInstances of surrogate decision-making are expected to increase with the rise in hospitalised older adults in Japan. Few large-scale studies have comprehensively examined the entire surrogate decision-making process. This study aimed to gather information to assess the current state of surrogate decision-making in Japan.MethodsA cross-sectional survey was conducted using online questionnaires. A total of 1000 surrogate decision-makers responded to the questionnaire. We examined the characteristics of surrogate decision-makers and patients, content of surrogate decision-making meeting (...) regarding life-sustaining treatment between the doctors and surrogate decision-makers, extent of involvement of the various parties in the surrogate decision-making process, judgement grounds for surrogate decision-making, and frequency of involvement in the surrogate decision-making process.ResultsOf the participants, 70.5% were male and 48.3% were eldest sons. Only 7.6% of the patients had left a written record of their preferences and 48.8% of the surrogates reported no knowledge of the patient having expressed their prior intentions regarding medical care in any form. Respondents indicated that their family meetings with healthcare professionals mostly included the information recommended by guidelines in a surrogate decision-making meeting in Japan. Most participants reported a good understanding of the meeting content. Although many participants based their decisions on multiple grounds, surrogates’ considerations may not adequately reflect respect for patient autonomy in Japan. Specifically, the eldest son considered his own preference more frequently than that of the other surrogate decision-makers. In 26.1% of the cases, either zero or one family meeting with healthcare professionals was held. In these cases, significantly fewer decisions involved the participation of healthcare professionals other than the doctor compared to cases with multiple meetings.ConclusionsSurrogate decisions in Japan are most commonly made by eldest sons and may not frequently consider the perspectives of other surrogates. The finding that patient preferences were rarely known suggests a role for increased advance care planning. (shrink)

As research into Alzheimer's disease and other dementing disorders becomes more complex, risky, invasive, and commonplace, the need intensifies for discussion of the ethics of involving persons with dementia in research, specifically research of greater than minimal risk and of no expected direct benefit to the subject. Reviewing such studies pushes our traditional analysis tools to their limits. Simply balancing and prioritizing the basic ethical principles of respect for persons, beneficence, and justice that serves us well in reviewing the vast (...) majority of studies is inadequate when reviewing research of such ethical complexities as studies with marked risks and no expectation of direct benefit to subjects unable to consent or withdraw. Moving up to the level of theory, placing these principles within the commonly applied frameworks of consequentialism, deontology, or virtue ethics bring us no closer to reducing the tensions such research creates between upholding individual autonomy and advancing society's need to learn how to treat and cure these devastating diseases. What is needed is the introduction of more contemporary moral analyses. Specifically, we need to become more inclusive of the diversity of values perspectives of our general citizenry. In more theoretical terms, we ought to elevate to a more central role a communitarian perspective and a feminist ethics emphasis on relationships and context as we rush to keep in step, ethically, with this rapidly expanding area of medical inquiry. (shrink)

The minimally conscious state presents unique ethical, legal, and decision-making challenges because of the combination of diminished awareness, phenomenal experience, and diminished or absent comm...

Unrepresented patients are individuals who lack decision makingcapacity and have no family or friends to make medical decisions for them. This population is growing in number in the United States, particularly within emergency and intensive care settings. While some bioethical discussion has taken place in response to the question of who ought to make decisions for these patients, the issue of how surrogate medical decisions ought to be made for this population remains unexplored. In this paper, (...) we argue that standard applications of surrogate decision making principles in health care are not well suited to many unrepresented patients with long-term mental health diagnosis. We argue that when applied to this population, the substituted judgment standard, designed to preserve patient preferences and values, may lead to the exclusion of their preferences. We argue further that the application of the best interest standard runs the risk of leading to harmful cases of overtreatment or undertreatment. We offer an alternative interpretation of the best interest principle that is better able to promote the well-being of unrepresented patients, especially for those who lack capacity because of mental disorders. This alternative is based on the practices and principles of harm reduction and includes three components: emphasis on considering the expressed preferences of unrepresented patients, a focus on reducing harm as well as the delivery of clinical benefits, and a recognition of the importance of promoting trust. (shrink)

Volume 20, Issue 2, February 2020, Page 62-64.

A first principle in ethics consultation is that reasoning is essential. A second principle is that the religious and cultural views of patients and their surrogates are usually respected. What can be done when these principles collide—when patients or surrogates have religious or cultural views and beliefs that clinicians find unreasonable or even offensive? Mediation may provide some approaches to assist us in providing the most ethically appropriate assistance.

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)

Standard views on surrogate decision making present alternative ideal models of what ideal surrogates should consider in rendering a decision. They do not, however, explain the physician''s responsibility to a patient who lacks decisional capacity or how a physician should regard surrogates and surrogate decisions. The authors argue that it is critical to recognize the moral difference between a patient''s decisions and a surrogate''s and the professional responsibilities implied by that distinction. In every case involving (...) a patient who lacks decisional capacity, physicians and the treatment team have to make judgments about the appropriateness of both the surrogate and the surrogate''s decision. They have to assess the surrogate''s decisional capacity and attitude toward the patient as well as the reasons that support the surrogate''s decision. This paper provides a model for acceptable surrogate decisions and a standard for blocking inappropriate surrogates. Only decisions based on widely shared reasons are allowable for surrogate refusal of highly beneficial treatment. (shrink)

BackgroundIn the coming years, surrogate decision-making is expected to become highly prevalent in Japanese clinical practice. Further, there has been a recent increase in activities promoting advance care planning, which potentially affects the manner in which judgements are made by surrogate decision-makers. This study aims to clarify the grounds on which surrogate decision-makers in Japan base their judgements.MethodsIn this qualitative study, semi-structured interviews were conducted to examine the judgement grounds in surrogate decision-making for critical life-sustaining treatment (...) choices in acute care hospitals.ResultsA total of 228 participants satisfied the inclusion criteria, and 15 were selected for interviews. We qualitatively analysed the content of 14 interview transcripts, excluding one that did not meet the inclusion criteria. Based on this analysis, we extracted 4 core categories, 17 categories, 35 subcategories, and 55 codes regarding judgement grounds in surrogate decision-making. The four core categories were as follows: patient preference-oriented factor (Type 1), patient interest-oriented factor (Type 2), family preference-oriented factor (Type 3), and balanced patient/family preference-oriented factor (Type 4). The Type 4 core category represented attempts to balance the preferences of the patient with those of the surrogate decision-maker.ConclusionsSurrogate decision-makers based their decisions on important aspects related to a patient’s life, and they considered not only the patient’s preferences and best interests but also their own preferences. As the need for surrogate decisions will increase in the future, decision-makers will need to consider judgement grounds from a more diverse perspective. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 36-37, October 2012.

The American Journal of Bioethics, Volume 12, Issue 10, Page 34-36, October 2012.

The central claim of this paper is that American states’ use of so-called “triggering conditions” to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts do not satisfy (...) the triggering conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations, and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation. (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)

The prelims comprise: References Additional Reading.

As clinicians, this case1 raises both personal and professional challenges. A key issue is who carries legal parental responsibility for the difficult decisions that may be required around life-sustaining care in baby T. Medicolegally, we understand that the surrogate mother holds legal parental responsibility for baby T until this can be transferred to the intended parents.2 But this process can take many months to complete, after the birth of baby. As M is now critically ill and unable to (...) engage in any discussion around the care of her baby, who becomes the legal guardian of the baby, for complex decision making that involves either reorientation of care away from intensive care with the inevitable consequence of death in this extremely premature baby, or continuing this life-sustaining treatment with a high likelihood for major neonatal morbidity and longer term disability? Does it pass onto one of the IPs as the genetic father, or does this responsibility fall on the neonatal consultant managing the baby in intensive care? And if an antenatal surrogacy agreement had existed, is it legally binding for inclusion of the IPs perspectives in the decision-making, especially if our medical decision making turns out to be at discord with the beliefs and wishes of the IPs for baby T? Box 1 ### Current surrogacy proceedings in the UK.2 6–8 The Law Commission UK5 is currently reviewing the decision on whether legal parenthood to intended parents can be effected immediately at the time of birth of the baby. Parental orders. (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)

Conflicts involving end-of-life care between healthcare providers (HCPs) and surrogate decision-makers (SDMs) have received sustained attention for more than a quarter of a century, with early studies demonstrating a frequency of HCP-SDM conflict in ICUs ranging from 32–78% of all admissions (Abbott et al. 2001; Breen et al. 2001; Studdert et al. 2003; Azoulay et al. 2009). More recent studies not only acknowledge the persistence of clinical conflict in end-of-life care (Leland et al. 2017), but they have begun to (...) focus on the ways in which these conflicts escalate to verbal or physical violence in the ICU (Slack et al. 2023; Bass et al. 2024; Berger et al. 2024; Sjöberg et al. 2024). I will argue that part of the explanation for the persistence–and even escalation–of ICU disputes is the incommensurable value systems held by many conflicting HCPs and SDMs. I will argue that a common value system among HCPs can be understood as a “Best Interest Values” (BIV) hierarchy, which I will argue is irreconcilable with the set of “Life-Continuation Values” (LCV) held by a sizable minority of families in the United States. I argue this values-conflict undergirds many ICU disputes. If I am correct that an incommensurable value system underlies many ICU conflicts, then it is not just ineffectual for HCPs to impose their BIV system on LCV families, but also wrong given the American commitment to values pluralism. I conclude that the way to navigate continuous ICU surrogate wars is for BIV-focused healthcare institutions to engage more constructively with LCV stakeholders. (shrink)

I review the recent case of Edna Folz, a 73 year-old woman who was suffering through the end stages of very advanced Alzheimer's dementia when her case was adjudicated by the Wisconsin Supreme Court. I consider this case as an example of how courts are increasingly misinterpreting the ethical and legal decision-making standards known as substituted judgment and best interests and thereby threatening individuals' treatment decision-making rights as developed by other courts over the past two decades and creating serious roadblocks (...) to health-care providers' ability to render appropriate patient care. The Wisconsin Supreme Court held that Edna's legal guardian could not authorize withdrawal of Edna's treatment, ruling that as a matter of law, if an incompetent person is not in a persistent vegetative state, it is not in his or her best interests for life-sustaining treatment to be withdrawn unless (s)he has executed an advance directive or other statement clearly indicating his or her desires. (shrink)

This paper will discuss why and how social network sites ought to be used in surrogate decision making (SDM), with focus on a context like Singapore in which substituted judgment is incorporated as part of best interest assessment for SDM, as guided by the Code of Practice for making decisions for those lacking mental capacity under the Mental Capacity Act (2008). Specifically, the paper will argue that the Code of Practice already supports an ethical obligation, as part of (...) a patient-centred care approach, to look for and appraise social network site (SNS) as a source of information for best interest decision making. As an important preliminary, the paper will draw on Berg’s arguments to support the use of SNS information as a resource for SDM. It will also supplement her account for how SNS information ought to be weighed against or considered alongside other evidence of patient preference or wishes, such as advance directives and anecdotal accounts by relatives. (shrink)

Daniel Brudney's clear-headed analysis, in this issue of the Hastings Center Report, of the difference between a patient's and a surrogate's right to make medical treatment decisions contributes to a longstanding conversation in bioethics. Brudney offers an epistemological and a moral argument for the patient's and the surrogate's right to decide. The epistemological argument is the same for both parties: the patient has a right to decide because she is presumed to know her own interests better than (...) anyone else, and the surrogate is entitled to make decisions because she knows the patient better than anyone else. However, argues Brudney, the moral arguments are not parallel. The patient's moral right to decide for herself is an exercise of autonomy, but the only ground for the responsibility held by the surrogate, says Brudney, is that she knows the patient better than the health care professionals do. If in fact that's not the case, then she forfeits her right to be the patient's surrogate. For all the clarity and force of his argument, I think Brudney may be barking up the wrong tree. In cases of proxy decision-making, it's intimacy, not knowledge, that does the heavy moral lifting. (shrink)

Berger (forthcoming) states that moral intimacy is important in applying the best interests standard. But what he calls moral intimacy requires that someone has overcome epistemic burdens needed to represent the patient. We argue elsewhere that good surrogate decision-making is first and foremost a matter of overcoming epistemic burdens, or those obstacles that stand in the way of a surrogate decision-maker knowing what a patient wants and how to satisfy those preferences. Berger’s notion of moral intimacy depends on (...) epistemic intimacy: the fact that a surrogate's epistemic burdens with respect to the best interests of the incapacitated patient have been adequately surmounted, plus some other feature. Thus, where a particular patient-surrogate relationship fails to be morally intimate, what is lacking is either epistemic intimacy or this second feature. Furthermore, Berger uses the notion of moral intimacy as an explanans for the application of the best interests standard. We argue that the notions of epistemic intimacy and epistemic burdens not only help to explain the notion of moral intimacy, but also better explain the application of the best interests standard. Given the role of epistemic burdens and the epistemic intimacy that overcoming them enables, bioethicists and physicians should consider a surrogate’s epistemic standing relative to the patient’s best interests before pronouncing on the former’s ethical probity. (shrink)

ABSTRACT In this paper, I address some of the shortcomings of established clinical ethics centring on personal autonomy and consent and what I label the Doctrine of Respecting Personal Autonomy in Healthcare. I discuss two implications of this doctrine: 1) the practice for treating patients who are considered to have borderline decision‐making competence and 2) the practice of surrogate decision‐making in general. I argue that none of these practices are currently aligned with respectful treatment of vulnerable individuals. Because of (...) ‘structural arbitrariness’ in the whole process of how we assess decision‐making competence, this area is open to disrespectful treatment of people. The practice of surrogate decision‐ making on the basis of a single person's judgment is arguably not consistent with ethical and political requirements derived from the doctrine itself. In response to the inadequacies of the doctrine, I suggest a framework for reasonableness in surrogate decision‐making which might allow practice to avoid the problems above. I conclude by suggesting an extended concept of Patient Autonomy which integrates both personal autonomy and the regulative idea of morality that is required by reasonableness in deciding for non‐competent others. (shrink)

The neonatal nurse forges a unique partnership with parents of a critically ill infant who are often, unexpectedly, exposed to the bewildering and complex environment that is neonatal intensive care, helping navigate them through this unchartered territory. Our role is multifaceted, with the primary focus of providing care in the best interests of our patients.1 This is realised through the provision of high-quality evidence-based care, advocating for the needs of the baby and family, and when required acting as a linchpin (...) bridging communication channels between medical and nursing teams, other allied health professionals, and the family.1 2 Ordinarily, the birth of an extremely preterm infant is a distressing, life-changing event for parents; this is further complicated by a number of additional factors in this complex scenario3. (shrink)

When patients are not able to speak for themselves, surrogate decision makers are asked to guide treatment decisions and formulate a plan of care in accordance with what the patients would have wanted. This necessitates an exploration into the patients’ views about life and how it should be lived, how the patients constructed their identity or life story, and their attitudes towards sickness and suffering. When an individual appoints a surrogate, such as a healthcare power of attorney, (...) a common presumption is that this designation evinces merit. This obscures the possibility of multiple other considerations that influence individual choice. This article presents a clinical case in which the claim to know someone best created a controversy that brought treatment decisions to a standstill. Further, it illuminates how the question, “Given the current medical condition, what would this person want?” risks presuming that a singular, unambiguous preference exists and that one person can provide the answer. Clinical ethicists can play a vital role in situations when there is a dispute among a designated surrogate and family members over a patient’s preference. By embracing the complexity of the desire to synthesize seemingly irreconcilable perspectives about identity, uncovering the reasons that underlie disagreement, and guiding inquiry in such a way that allows stakeholders to move beyond the conflict, clinical ethicists can facilitate decision making that honors the patient and may mitigate moral distress. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 41-43, October 2012.

The American Journal of Bioethics, Volume 12, Issue 10, Page 47-49, October 2012.