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)

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)

This book is the most comprehensive treatment available of one of the most urgent - and yet in some respects most neglected - problems in bioethics: decision-making for incompetents. Part I develops a general theory for making treatment and care decisions for patients who are not competent to decide for themselves. It provides an in-depth analysis of competence, articulates and defends a coherent set of principles to specify suitable surrogate decisionmakers and to guide their choices, examines the value (...) of advance directives, and investigates the role that considerations of cost ought to play in decisions concerning incompetents. Part II applies this theoretical framework to the distinctive problems of three important classes of individuals, many of whom are incompetent: minors, the elderly and psychiatric patients. The authors' approach combines a probing analysis of fundamental issues in ethical theory with a sensitive awareness of the concrete realities of health care institutions and the highly personal and individual character of difficult practical problems. Its broad scope will appeal to health professionals, moral philosophers and lawyers alike. (shrink)

AimIn case of extremely rare diseases, case reports are often the only experience to draw from for evidence-based management. Carmi syndrome is a rare, mostly lethal combination of junctional epidermolysis bullosa and pyloric atresia. During an ethical board, there were differences in perception of mortality rate. We tested the hypothesis that the cumulative mortality of single case reports is lower than that of multiple case series.CaseA baby girl was born at 33 weeks gestation with Carmi syndrome. The treatment (...) options discussed in an interdisciplinary ethics board were a palliative approach versus surgical gastrojejunostomy. Because about one third of operated children described in case reports survived, we opted for surgical treatment. The patient died a painful death 4 weeks later.MethodsThe PubMed database was systematically searched for reports of Carmi syndrome. Single case reports were compared to case series in terms of outcome.ResultsA total of 102 cases of Carmi syndrome were identified in the literature. Mortality of single case reports was 17 out of 27 patients (63%), while that of case series was higher at 62 out of 74 patients (84%,p = 0.036).ConclusionsSelection and publication bias may lead to inflation of survival rates in single case reports because successful cases are more likely to be published in the literature. These biases may lead to inappropriately aggressive treatment in futile cases. Clinicians should be cautious when discussing prognosis and making decisions based on the cumulative experience of case reports of extremely rare or novel diseases. (shrink)

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)

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 (...) class='Hi'>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)

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A (...) qualitative descriptive design with analysis of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (shrink)

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)

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)

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)

There are two contrasting views on the decision-making for life-sustaining treatment in advanced stages of dementia when the patient is deemed incompetent. One is to respect the patient's precedent autonomy by adhering to advance directives or using the substituted judgement standard. The other is to use the best-interests standard, particularly if the current judgement on what is best for the incapacitated patient contradicts the instructions from the patient's precedent autonomy. In this paper, I argue that (...) the protracted clinical course of dementia over many years requires the extended perspective of a progressive decision-making process—extended in both social space and time. The ongoing debate between these two competing views has missed this perspective by focussing on an exclusive disjunction between the competent former self and the incompetent current self. Drawing on theories of situated cognition in cognitive science, I will show that the cognition of a demented patient can be viewed as extended and embodied by her supportive social environment. As the disease progresses, the content of the mind of a demented person becomes partially constituted by such external resources along with her diminishing intrinsic mind. With this understanding, medical decision-making for a demented patient can be construed as a temporally and socially extended practice. A collective decision-making body consisting of the patient, her family and surrogates, and the clinician, should make progressive decisions as a whole over years of the disease course. Finally, I will provide a practical example of how this proposal can be applied in clinical practice. (shrink)

With the improvements in medical care and resultant increase in life expectancy of the intellectually disabled, it will become more common for healthcare providers to be confronted by ethical dilemmas in the care of this patient population. Many of the dilemmas will focus on what is in the best interest of patients who have never been able to express their wishes with regard to medical and end-of-life care and who should be empowered to exercise surrogate medical decision-making (...) authority on their behalf. A case is presented that exemplifies the ethical and legal tensions surrounding surrogate medical decision making for acutely ill, never-competent, profoundly intellectually disabled patients. (shrink)

BackgroundFunctional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome and the minimally conscious state. It remains unclear how it informs surrogate decision-making.ObjectiveTo explore how the next of kin of patients with disorders of consciousness interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.Methods and SampleWe conducted problem-centered interviews with seven next of kin of patients with DOC who had undergone a functional (...) HD-EEG examination at a neurological rehabilitation center in Germany. The examination included an auditory oddball paradigm and a motor imagery task to detect hidden awareness. We analyzed the interview transcripts using structuring qualitative content analysis.ResultsRegardless of the diagnostic results, all participants were optimistic of the patients’ meaningful recovery. We hypothesize, that participants deal with the results of examinations according to their belief system. Thus, an unfavorable evaluation of the patient’s state had the potential to destabilize the participant’s belief system. To re-stabilize or to prevent the destabilization of their belief system, participants used different strategies. Participants accepted a “positive” HD-EEG result since it stabilized their belief system.ConclusionWe hypothesize, that a group of next of kin of patients with DOC deals with functional neurodiagnostics results on the basis of the result’s value and their high hope that the patient will recover meaningfully. A psychological mechanism seems to moderate the impact of functional neurodiagnostics on surrogate treatment decisions. (shrink)

Locked-in syndrome (LIS) is one of the most dramatic neurological outcomes and has a profound impact on patients and their families. Most patients have intact cognition and intellectual ability and perception. Communication is possible with eyelid and/or eyeball movement. According to the literature, the wish to die is not an important issue in acute and chronic LIS. This study describes and analyses the ethical decision-making process in two opposite cases of LIS in the intensive care unit. One (...) class='Hi'>patient expressed the wish to prolong her life for as long as possible; the other patient asked for deliberate termination of life. Both wishes were honoured. In conclusion, most patients with LIS are competent and intellectually intact. In The Netherlands the autonomy of the patient is respected by law. In respecting this autonomy, medical choices can be different in comparable patients. (shrink)

Patients who are incompetent need a surrogate decision maker to make treatment decisons on their behalf. One of the main ethical questions that arise in this context is what standard ought to govern such decision making. According to the Substituted Judgment Standard, a surrogate ought to make the decision that the patient would have made, had he or she been competent. Although this standard has sometimes been criticized on the grounds of being difficult to (...) apply, it has found wide appeal, since it it is alleged to protect incompetent patients? right to autonomy. The main purpose of the thesis is to evaluate SJS, from a conceptual and ethical perspective. It argues that the traditional formulation of SJS is seriously incomplete, and discusses alternative ways of completing it. Moreover, it questions the received view on how SJS should be morally justified, by offering arguments against the view that decision making in accordance with this standard extends the patient's opportunities for self-determination. Instead it suggests a virtue-ethical approach according to which the moral point of SJS-based decision making is not to protect the patient's interests, but to express respect for person. The thesis also critically assesses empirical studies according to which surrogates often fail to correctly predict patients? actual treatment preferences. It is shown that such results cannot, for a number of reasons, support the conclusion drawn that surrogates are ill-equipped to make decisions that comply with SJS. (shrink)

Clinical ethics consultants often confront the most difficult clinical encounters, typically in the setting of chronically critically ill patients and surrogate decision makers. These encounters require not only analytical skills but interpersonal skills as well. In this article, I focus on an interpersonal skill absent from the American Society for Bioethics and the Humanities Task Force’s Core Competencies for Healthcare Ethics Consultation. I introduce the psychoanalytic concept of transference and argue that knowledge and use of transference (...) phenomena are sometimes indispensable for ethics consultation with surrogate decision makers. For solicitation of moral views, disclosure of relevant beliefs and values, and identification of the central ethical question—essential to assessment and analysis—cannot at times begin without recognition and working through of transference. (shrink)

With the aging of the general population and the ability of intensivists to support patients using ventilator support, tracheostomy has become a vital tool in the medical management of critically ill patients. While much of the medical literature on tracheostomy has focused on the optimal timing of and indications for performing this procedure, little is written on the ethical tensions that can revolve around decisions by patients, surrogates, and physicians on its use. This article will elucidate the ethical dilemmas that (...) can arise surrounding the use of tracheostomy in critically ill patients and how ethics consultants and committees can approach these cases to allow resolution. (shrink)

When a patient's treatment decisions are the product of delusion, this is often taken as a paradigmatic case of undermined decisional capacity. That is to say, when a patient refuses treatment on the basis of beliefs that in no way reflect reality, clinicians and ethicists tend to agree that their refusal is not valid. During the COVID-19 pandemic, however, we have witnessed many patients refuse potentially life-saving interventions not based on delusion but on conspiracy beliefs. Importantly, many of (...) the beliefs espoused by conspiracy theorists resemble delusions in a number of relevant ways. For instance, conspiracy beliefs often posit states of affairs that could not possibly exist in the world, they are recalcitrant in the face of disconfirming evidence, and they tend to put the believer in a state of paranoia. Given these similarities, how should we think about conspiracy theorists' capacity for making clinical decisions? In this paper, I attempt to answer this question by first offering an account of just what makes some set of beliefs count as a conspiracy theory. Second, I attempt to disambiguate conspiracy beliefs from delusions by exploring important conceptual and psychological features of both. Finally, I apply standard criteria for assessing a patient's decision-making capacity to instances of conspiracy beliefs and argue that, although the picture is muddy, there may be cases in which conspiracy beliefs undermine capacity. I end by exploring the implications that this might have for surrogate decision-making and addressing potential objections. (shrink)

Patients with mental illness, and depression in particular, present clinicians and surrogate decision-makers with complex ethical dilemmas when they refuse life-sustaining non-psychiatric treatment. When treatment rejection is at variance with the beliefs and preferences that could be expected based on their premorbid or “authentic” self, their capacity to make these decisions may be called into question. If capacity cannot be demonstrated, medical decisions fall to surrogates who are usually advised to decide based on a substituted judgment standard or, (...) when that is not possible, best interest. We propose that in cases where the patient meets the widely accepted cognitive criteria for capacity but is making decisions that appear inauthentic, the surrogate may best uphold patient autonomy by following a “restorative representation” model. We see restorative representation as a subset of substituted judgement in which the decision-maker retains responsibility for deciding as the patient would have, but discerns the decision their “truest self” would make, rather than inferring their current wishes, which are directly influenced by illness. Here we present a case in which the patient’s treatment refusal and previously undiagnosed depression led to difficulty determining the patient’s authentic wishes and placed a distressing burden on the surrogate decision-maker. We use this case to examine how clinicians and ethicists might better advise surrogates who find themselves making these clinically and emotionally challenging decisions. (shrink)

Over the last century, and especially since the publication of the Belmont Report in 1978, respect for persons, as exemplified by respect for autonomous decision-making, has become a central tenet in the practice of medicine. The authority of cognitively competent adults to make their own healthcare decisions is enshrined in both law and practice in most advanced industrialized nations. The right to consent to or to refuse medical interventions is virtually absolute, but is contingent on the provision of materially (...) relevant information about the benefits and burdens or risks of the proposed treatment as well as the freedom from coercion by others, especially healthcare personnel. This power also extends to the kinds, amounts and details of the proposed intervention, including the option to decline to hear anything, if one so chooses, assuming that this is a rational choice. This respect transfers to other competent individuals who are authorized as surrogates to decide for those who have temporarily or permanently lost the capacity to make their own healthcare decisions. (shrink)

Founded upon the primacy of the principle of respect for autonomy, three methods of surrogate decision making traditionally have been promoted to help the family and friends of incapacitated patients. Unfortunately, the standards of advance directives, substituted judgment, and best interests are often inadequate in practice. Studies report that few patients have formal, written advance directives; that patients often change their minds about treatment over time; that many patients are simply not ready or willing to plan ahead—in part, (...) because some patients and families simply don’t believe in autonomy; that those patients who do plan ahead often do not communicate their plans; and that while some patients want their directives followed strictly, many prefer that their surrogates use judgment in making decisions. After reviewing articles describing a variety of alternative approaches, a new clinical standard of surrogate empowerment is proposed to reconcile and integrate these observations and concepts. The “procedure” for this clinical standard is presented. (shrink)

This case raises the difficult question of how to respond to patients who appear to lack decision-making capacity, yet retain limited communication that allows them to state a preference for life-sustaining treatment that conflicts with the choice of their surrogate. I argue that the patient’s preference should be honored, even though the patient lacks decision-making capacity, and the preference contradicts the wishes of the surrogate.

Our hospital’s policy and procedures for “Patients Without Surrogates” provides for gradated safeguards for managing patients’ treatment and care when they lack decision–making capacity, have no advance directives, and no surrogate decision makers are available. The safeguards increase as clinical decisions become more significant and have greater consequences for the patient. The policy also directs social workers to engage in “rigorous efforts” to search for surrogates who can potentially provide substituted judgments for such patients. We (...) describe and illustrate the policy, procedures, and kinds of expected rigorous efforts through our narration of an actual but disguised case for which we provided clinical ethics guidance and social work expertise. Our experience with and reflection on this case resulted in four recommendations we make for health care facilities and organizations that aim to provide quality care for their own patients without surrogates. (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 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...

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)

Background: Treatment of psychotic disorders in pregnancy is often ethically and clinically challenging, especially when psychotic symptoms impair decision-making capacity. There are several competing ethical obligations to consider: the ethical obligation to maternal autonomy, the maternal and fetal beneficence-based obligations to treat peripartum psychosis, and the fetal beneficence-based obligation to minimize teratogenic exposure. Objective: This article outlines an ethical framework for clinical decision-making for the management of chronic psychosis in pregnancy, with an emphasis on special considerations in (...) the previable and periviable period. Case Presentation: A 31-year-old gravida 2, para 1 with intrauterine pregnancy at 12 weeks and 4 days gestation was brought to the emergency department by her husband seven months after delivering her first child, due to sudden onset of behavioral changes that included self-isolation, not eating, and not taking care of her child. Her past medical history included hypothyroidism and inflammatory bowel disease, but no prior psychiatric illness. After being admitted to the psychiatric hospital, she continued to have poor oral intake and weight loss despite initial inpatient treatment with antipsychotics, levothyroxine, and discontinuation of corticosteroids. Her pregnancy was also complicated by the diagnosis of multiple fetal anomalies at 20 weeks gestation, when the fetus was periviable. Conclusions: For previable or periviable pregnancies, the patient and/or surrogate should decide whether to pursue prenatal genetic screening and invasive diagnostic testing, as well as whether to continue or terminate the pregnancy. When the choice is made to continue the pregnancy, initiation of long-term psychiatric treatment (including medications with potential adverse fetal effects) should be based on shared decision-making between the physician and the patient and/or surrogate. Although some pharmacologic interventions may have potential adverse effects on the developing fetus, the use of psychotropic medications can be ethically justified, even if the patient herself does not have the capacity to consent and requires a surrogate, when the goal is to restore maternal autonomy and minimize the risks of maternal and fetal harm from untreated psychiatric illness. (shrink)

BackgroundHealthcare providers have to make ethically complex clinical decisions which may be a source of stress. Researchers have recently introduced Artificial Intelligence (AI)-based applications to assist in clinical ethical decision-making. However, the use of such tools is controversial. This review aims to provide a comprehensive overview of the reasons given in the academic literature for and against their use.MethodsPubMed, Web of Science, Philpapers.org and Google Scholar were searched for all relevant publications. The resulting set of publications was (...) title and abstract screened according to defined inclusion and exclusion criteria, resulting in 44 papers whose full texts were analysed using the Kuckartz method of qualitative text analysis.ResultsArtificial Intelligence might increase patient autonomy by improving the accuracy of predictions and allowing patients to receive their preferred treatment. It is thought to increase beneficence by providing reliable information, thereby, supporting surrogate decision-making. Some authors fear that reducing ethical decision-making to statistical correlations may limit autonomy. Others argue that AI may not be able to replicate the process of ethical deliberation because it lacks human characteristics. Concerns have been raised about issues of justice, as AI may replicate existing biases in the decision-making process.ConclusionsThe prospective benefits of using AI in clinical ethical decision-making are manifold, but its development and use should be undertaken carefully to avoid ethical pitfalls. Several issues that are central to the discussion of Clinical Decision Support Systems, such as justice, explicability or human–machine interaction, have been neglected in the debate on AI for clinical ethics so far.Trial registrationThis review is registered at Open Science Framework (https://osf.io/wvcs9). (shrink)

The prelims comprise: References Additional Reading.

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)

This issue’s “Legal Briefing” column continues coverage of recent legal developments involving medical decision making for unbefriended patients. These patients have neither decision-making capacity nor a reasonably available surrogate to make healthcare decisions on their behalf. This topic has been the subject of recent articles in JCE. It has been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the “single greatest category of problems” encountered in bioethics consultation. Moreover, the (...) scope of the problem continues to expand, especially with rapid growth in the elderly population and with an increased prevalence of dementia.Unfortunately, most U.S. jurisdictions have failed to adopt effective healthcare decision-making systems or procedures for the unbefriended. “Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform.” Most providers are “muddling through on an ad hoc basis.” Still, over the past several months, a number of state legislatures have finally addressed the issue. These developments and a survey of the current landscape are grouped into the following 14 categories. The first two categories define the problem of medical decision making for the unbefriended. The remaining 12 describe different solutions to the problem. The first six categories were covered in Part 1 of this article; the last eight categories are covered in this issue (Part 2). 1. Who are the unbefriended?2. Risks and problems of the unbefriended3. Prevention: advance care planning, diligent searching, and careful capacity assessment4. Decision-making mechanisms and standards5. Emergency exception to informed consent6. Expanded default surrogate lists: close friends7. Private guardians8. Volunteer guardians9. Public guardians10. Temporary and emergency guardians11. Attending physicians12. Other clinicians, individuals, and entities13. Institutional committees14. External committees. (shrink)

Objective: To determine the usefulness of Q methodology to locate and describe shared subjective influences on clinical decision making among participant physicians using hypothetical cases containing common ethical issues. Design: Qualitative study using by-person factor analysis of subjective Q sort data matrix. Setting: University medical center. Participants: Convenience sample of internal medicine attending physicians and house staff (n = 35) at one midwestern academic health sciences center. Interventions: Presented with four hypothetical cases involving urgent decision making near (...) the end of life, participants selected one of three specific clinical actions offered for each case. Immediately afterward and while considering their decision, each respondent sorted twenty-five subjective self-referent items in terms of the influence of each statement on their decision-making process. By-person factor analysis, where participants are defined as variates, yielded information about the attitudinal background the physicians brought to their consideration of each hypothetical case. We performed a second-order factor analysis on all of the subjective viewpoints to determine if a smaller core of shared attitudes existed across some or all of the four case vignettes. Factor scores for each item and post-sort comments from interviews conducted individually with each respondent guided the interpretation of ethical perspective used by these respondents in making clinical decisions about the cases. Measurements and Main Results: Second-order factor analysis on seventeen viewpoints used by physicians in the four hypothetical urgent decision cases revealed three moderately correlated (r 2 < 40%) subjective core attitudinal guides used broadly among all the cases and among sixteen of the seventeen original factors. Across all the cases, our participants were guided in general by: (1) patient-focused beneficence, (2) a patient- and surrogate-focused perspective that includes risk avoidance, and (3) best interest of the patient guided by ethical values. Economic impact on the physician, expediency in resolution of the situation, and the expense of medical treatment were not found to be influential determinants in this study. Conclusions: Q sorting and by-person factor analysis are useful qualitative methodological tools to study the complex structure of subjective attitudes that influence physicians in making medical decisions. This study revealed the subjective viewpoints used by our physician participants as they made ethically challenging treatment decisions. The three second-order factors identified here are grounded in current bioethical values as well as the personal traits of physicians. The participants' decision methods appear to resemble casuistry more than principle-based decision making. Generalizability of results will require further studies. (shrink)

This issue’s “Legal Briefing” column covers recent legal developments involving medical decision making for unbefriended patients. These patients have neither decision-making capacity nor a reasonably available surrogate to make healthcare decisions on their behalf. This topic has been the subject of recent articles in JCE. It has been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the “single greatest category of problems” encountered in bioethics consultation. Moreover, the scope of (...) the problem continues to expand, especially with rapid growth in the elderly population and with an increased prevalence of dementia.Unfortunately, most U.S. jurisdictions have failed to adopt effective healthcare decision-making systems or procedures for the unbefriended. “Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform.” Most providers are “muddling through on an ad hoc basis.” Still, over the past several months, a number of state legislatures have finally addressed the issue. These developments and a survey of the current landscape are grouped into the following 14 categories. The first two define the problem of medical decision making for the unbefriended. The remaining 12 categories describe different solutions to the problem. The first six of these solutions are discussed in this article (Part 1). The last eight solutions will be covered in the Summer 2012 issue of JCE (Part 2). 1. Who are the unbefriended?2. Risks and problems of the unbefriended3. Prevention: advance care planning, diligent searching, and careful capacity assessment4. Decision-making mechanisms and standards5. Emergency exception to informed consent6. Expanded default surrogate lists: close friends7. Private guardians8. Volunteer guardians9. Public guardians10. Temporary and emergency guardians11. Attending physicians12. Other clinicians, individuals, and entities13. Institutional committees14. External committees. (shrink)

This issue’s “Legal Briefing” column covers recent legal developments involving medical decision making for incapacitated patients who have no available legally authorized surrogate decision maker. These individuals are frequently referred to either as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. The challenges involved in obtaining consent for medical treatment on behalf of these individuals have been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the “single greatest category (...) of problems” encountered in bioethics consultation. In 2012, JCE published a comprehensive review of the available mechanisms by which to make medical decisions for the unbefriended. The purpose of this “Legal Briefing” is to update the 2012 study. Accordingly, this “Legal Briefing” collects and describes significant legal developments from only the past three years. My basic assessment has not changed. “Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform.” Most facilities are “muddling through on an ad hoc basis.” But the situation is not wholly negative. There have been a number of promising new initiatives. I group these developments into the following seven categories: 1. Increased Attention and Discussion 2. Prevention through Better Advance Care Planning 3. Prevention through Expanded Default Surrogate Lists 4. Statutorily Authorized Intramural Mechanisms 5. California Litigation Challenging the Team Approach 6. Public Guardianship 7. Improving Existing Guardianship Processes. (shrink)

Advance patient directives are various forms of anticipatory medical directives made by competent individuals for the eventuality of future incompetence. They are therefore appropriate instruments for competent patients in the early stage of Alzheimer's disease to document their self-determined will in the advanced stages of dementia. Theoretical objections have been expressed against the concept of advance patient directives (problems of authenticity and identity) which, however, cannot negate the fundamental moral authority of advance patient directives. Therefore, patients, family (...) members, and physicians should make use of the appropriate form of advance directive as part of common treatment and care planning. Advance directives, when utilized intelligently, represent appropriate instruments for shared decision-making by patient, family members and physician. They should be utilized to a greater extent, particularly for the treatment planning of demented patients. (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)

At the University of Newcastle, health law and ethics is taught and assessed in each year of the five-year curriculum. However, the critical question for assessment remains: 'Does teaching ethics have a measurable effect on the clinical activity of medical students who have had such courses?' Those responsible for teaching confront this question each year they sit down to construct their assessment tools. Should they assess what the student knows? Should they assess the student's moral reasoning, that is, (...) what decisions the student makes, and, how these decisions are justified, or should they assess what the student actually does when dealing with patients in the clinical setting, and how he or she does it? From 1982 to 1991, assessment at Newcastle was primarily aimed at determining the quality of the students' ethics knowledge base. This paper describes the strengths and limitations of a purely knowledge-based method of evaluation and why in 1992, we are now attempting to redefine and assess, what we call 'clinical ethical competence' in terms of how students actually apply this knowledge base in a controlled clinical context. (shrink)

This article explores refusal of medical treatment by adult patients from ethical and legal perspectives. Initially, consequentialist and deontological ethical theory are outlined. The concepts of autonomy, paternalism and competence are described and an overview of Beauchamp and Childress’s principle-based approach to moral reasoning is given. Relevant common law is discussed and the provisions of the Mental Capacity Act 2005 in assessing competence is evaluated. In order to demonstrate the consideration of moral issues in clinical practice, ethical theory is (...) applied to two well-known incidents: the case of Re MB, where doubt over decision-making capacity led to a paternalistic act to override a patient’s choice; and the death of Emma Gough, a situation where respect for autonomy prevailed when healthcare staff acted lawfully in following a patient’s refusal of life-saving treatment. Finally, guidance from regulatory bodies on the roles and responsibilities of health professionals in relation to this topic are considered. (shrink)

As the field of clinical ethics consultation sets standards and moves forward with the Quality Attestation process, questions should be raised about what ethical issues really do arise in practice. There is limited data on the type and number of ethics consultations conducted across different settings. At Loyola University Medical Center, we conducted a retrospective review of our ethics consultations from 2008 through 2013. One hundred fifty-six cases met the eligibility criteria. We analyzed demographic data on these patients and (...) conducted a content analysis of the ethics consultation write-ups coding both the frequency of ethical issues and most significant, or key, ethical issue per case. Patients for whom ethics consultation was requested were typically male, white, between 50 and 69 years old, of non-Hispanic origin, and of Roman Catholic faith. Nearly half were in the intensive care unit and 44.2 % died in the hospital. The most frequent broad ethical categories were decision-making, goals of care/treatment, and end-of-life. More specifically, capacity, patient’s wishes/autonomy, and surrogate decision maker were the most frequent particular ethical issues. The most common key ethical issues were withdrawing/withholding treatment, patient wishes/autonomy, and capacity. Our findings provide additional data to inform the training of clinical ethics consultants regarding the ethical issues that arise in practice. A wider research agenda should be formed to collect and compare data across institutions to improve education and training in our field. (shrink)

This paper explores the ethical and conceptual implications of the findings from an empirical study (reported elsewhere) of decision-making capacity in anorexia nervosa. In the study, ten female patients aged thirteen to twenty-one years with a diagnosis of anorexia nervosa, and eight sets of parents, took part in semistructured interviews. The purpose of the interviews was to identify aspects of thinking that might be relevant to the issue of competence to refuse treatment. All the patient-participants were also tested (...) using the MacArthur Competence Assessment Tool—Treatment test of competence. This is a formalized, structured, interviewer-administered test of competence, which is a widely accepted clinical tool for determining capacity. The young women also completed five brief, self-administered questionnaires to assess their levels of psychopathology. The issues identified from the interviews are described under two headings: difficulties with thought processing and changes in values. The results suggest that competence to refuse treatment may be compromised in people with anorexia nervosa in ways that are not captured by traditional legal approaches. (shrink)

Situations in which patients lack medical decision-making (MDM) capacity raise ethical challenges, especially when the patients decline care that their surrogate decision makers and/or clinicians agree is indicated. These patients are a vulnerable population and should receive treatment that is the standard of care, in line with their the values of their authentic self, just as any other patient would. But forcing treatment on patients who refuse it, even though they lack capacity, carries medical and psychological (...) risks to the patients and the hospital staff. It is also often impractical to force some treatments, especially in the long term. For example, independent of the ethical “should” question, how would one force hemodialysis for the rest of a patient’s life, or force a surgery that requires weeks of post-operative physical therapy? In this article we present a novel algorithm that can help clinicians with ethical and practical decision making, with the goals of achieving the best outcomes for patients and reducing moral distress for their caretakers and clinicians. (shrink)

The locked-in syndrome is a state of profound paralysis with preserved awareness of self and environment who typically results from a brain stem stroke. Although patients in LIS have great difficulty communicating, their consciousness, cognition, and language usually remain intact. Medical decision-making by LIS patients is compromised, not by cognitive impairment, but by severe communication impairment. Former systems of communication that permitted LIS patients to make only “yes” or “no” responses to questions was sufficient to validate their consent (...) for simple medical decisions but not for consequential medical decisions such as whether to refuse further life-sustaining therapy. Emerging technologies including computer-tracking assistance of retained partial motor function and brain-computer interfaces promise to improve the communication ability of LIS patients and, when better developed, will allow them to fully exercise their right to actively participate in consequential medical decisions about their own medical care. Although so-called “covert cognition” patients clinically diagnosed as vegetative state that are shown to be aware by functional neuroimaging maybe metaphorically considered locked-in, it is nosologically more coherent not to categorize them formally as LIS. (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)

This article addresses how health professionals should monitor and safeguard their patients’ ability to participate in making clinical decisions and making subsequent decisions regarding the implementation of their treatment plan. Patient participation in clinical decision-making is essential, e.g. in self-care, where patients are responsible for most ongoing care. We argue that one common, fact-oriented patient education strategy may in practice easily tend to take a destructive form that we call error trawling. Illustrating with empirical findings (...) from a video study of consultations between clinicians and adolescent patients with diabetes, we argue on independent grounds that this strategy not only risks to overlook significant weaknesses in patient decision competence, but also to undermine patient capacity for decision-making and implementing care. In effect, this strategy for clinically monitoring and addressing the problem of fragile decision-making capacity brings hazards in need of address. We clo... (shrink)

BackgroundInformed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research.Methods53 subjects with DSM-5 diagnoses of a Substance Use Disorder and 50 non psychiatric comparison subjects participated in the survey from December 2014 to March 2015. This cross-sectional study was carried (...) out at a community-based Outpatient Treatment Center and at an urban-located Health Centre in Spain. A binary judgment of capacity/incapacity was made guided by the MacArthur Competence Assessment Tool for Clinical Research and a clinical interview. Demographics and clinical characteristics were assessed by cases notes and the Mini-Mental State Examination, the Global Assessment Functional Scale and the Clinical Global Impression Scale.ResultsNPCs performed the best on the MacCAT–CR, and patients with SUD had the worst performance, particularly on the Understanding and Appreciation subscales. 32.7 % SUD people lacked research-related decisional capacity. There were no statistically significant differences between the groups in terms of capacity to consent to research.ConclusionsThe findings of our study provide evidence that a large proportion of individuals with SUD had decisional capacity for consent to research. It is therefore inappropriate to draw conclusions about capacity to make research decisions on the basis of a SUD diagnosis. In the absence of advanced cognitive impairment, acute withdrawal or intoxication, we should assume that addicted persons possess decision-making capacity. Thus, the view that people with SUD would ipso facto lose decision-making power for research consent is flawed and stigmatizing. (shrink)

It has recently been proposed to incorporate the use of a “Patient Preference Predictor” (PPP) into the process of making treatment decisions for incapacitated patients. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Including a PPP in the shared decision-making process between clinicians and surrogates has the potential to better realize important ethical goals for (...) making treatment decisions for incapacitated patients. However, developing and implementing a PPP poses significant practical challenges. The present paper discusses these practical challenges and considers ways to address them. (shrink)

Background Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. Objective To examine the role of advance directives, orally expressed wishes, or (...) the presumed will of patients in a VS for family caregivers' decisions on life-sustaining treatment. Methods and sample A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. Results The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Conclusions Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning. (shrink)

BackgroundIn terms of ethical decision making, every clinical case, when seen as an ethical problem, may be analyzed by means of four topics: medical indications, patient preferences, quality of life, contextual features. The aim of this study was to compare the performance of 4th year dental students on Ethical Decision Making before and after a course on ethics.MethodsFourth year dental students from academic year 2013–2014 participated in the study. A 3-h lecture, which was about (...) four topics approach to clinical ethical case analysis, was given to the students. The lecture was based on case scenarios related with dental ethics. After the completion of lectures,a case scenario was presented to the students to assess their ethical decision making abilities. At the end of the exam, four topics and ethical judgment were evaluated. Their performances on this examination were evaluated before and after lectures. Statistical evaluation was performed with the significance level set at p 0.05). The mean total score of the students after the course was significantly higher than before course.ConclusionMore lectures should be implemented to the curriculum to increase the student awareness of ethical issues and to reach the ultimate goals of dental education. (shrink)