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)

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

Patient preference predictors aim to solve the moral problem of making treatment decisions on behalf of incapacitated patients. This commentary on a case of an unrepresented patient at the end of life considers 3 related problems of such predictors: the problem of restricting the scope of inputs to the models (the “scope” problem), the problem of weighing inputs against one another (the “weight” problem), and the problem of multiple reasonable solutions to the scope and weight problems (the “multiple (...) reasonable models” problem). Each of these problems poses challenges to reliably implementing patient preference predictors in important, high-stakes health care decision making. This commentary also suggests a way forward. (shrink)

Caring for unrepresented patients encompasses legal, ethical, and moral challenges regarding decision-making, consent, the patient’s values, wishes, best interest, and the healthcare team’s professional integrity and autonomy. In this article, I consider the impact of the aging population and the effects of the social determinants of health and suggest that without preventive intervention, the number of unrepresented patients will continue to increase. The health, social, and legal risk factors for becoming unrepresented require a multidisciplinary response. (...) Medical-Legal Partnerships (MLPs) bring healthcare and legal professionals together to address risk factors and health-harming legal needs. The article discusses the role of MLPs in identifying at-risk individuals, providing preventive interventions, and providing support. I make recommendations and conclude that proactive MLPs offer a sustainable approach to the ethical challenges in caring for unrepresented patients by providing interventions to prevent individuals from becoming unrepresented. (shrink)

In response to a global population with increasingly complex issues at the end of life, a movement in the U.S. has emerged incorporating doulas into end-of-life care. These end-of-life (EOL) doulas are not just focused on the quality of life, but also the quality of death. Like birth doulas, who provide support for pregnant patients and their families, EOL doulas help alleviate physical and mental discomfort in those who are dying. In this paper, we explore the role of EOL (...) doulas in improving the care of unrepresented patients, who lack decision-making capacity and have no surrogates or documents to guide their healthcare decisions. We argue that EOL doulas may help this traditionally underserved population experience a “good death” by answering several ethical and procedural challenges. As quasi-independent, non-medical members of the healthcare team, they provide a balancing, advocating voice on behalf of the patient, and may also help reduce inappropriate treatment, delays in care, and the overburdening of the public guardianship system. As such, attention should be given to formally defining their place within the healthcare infrastructure. Ultimately, we contend that EOL doulas are key to ensuring optimal, ethical care for unrepresented patient populations. (shrink)

Despite increased calls for hospital ethics committees to serve as default decision-makers about life-sustaining treatment for unrepresented patients who lack decision-making capacity or a surrogate decision-maker and whose wishes regarding medical care are not known, little is known about how committees currently function in these cases. This was a retrospective cohort study of all ethics committee consultations involving decision-making about LST for unrepresented patients at a large academic hospital from 2007 to 2013. There were 310 ethics (...) committee consultations, twenty-five of which involved unrepresented patients. In thirteen cases, the ethics consultants evaluated a possible substitute decision-maker identified by social workers and/or case managers. In the remaining cases, the ethics consultants worked with the medical team to contact previous healthcare professionals to provide substituted judgement, found prior advance care planning documents, or identified the patient’s best interest as the decision-making standard. In the majority of cases, the final decision was to limit or withdraw LST or to change code status to Do Not Resuscitate/Do Not Intubate. Substitute decision-makers who had been evaluated through the ethics consultation process and who made the final decision alone were more likely to continue LST than cases in which physicians made the final decision. In our centre, the primary role of ethics consultants in decision-making for unrepresented patients is to identify appropriate decision-making standards. In the absence of other data suggesting that ethics committees, as currently constituted, are ready to serve as substitute decision-makers for unrepresented patients, caution is necessary before designating these committees as default decision-makers. (shrink)

Medical decision making on behalf of unrepresented patients is one of the most challenging ethical issues faced in clinical practice. The legal environment surrounding these patients is equally complex. This article describes the efforts of a small coalition of interested healthcare professionals to address the issue in Colorado. A brief history of the effort is presented, along with discussion of the legal, ethical, practical, and political dimensions that arose in Colorado’s effort to address decision making for (...) class='Hi'>unrepresented patients through an extension of the existing Colorado Medical Treatment Decision Act (CRS 15-18). A discussion of lessons learned in the process is included. (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)

The shortage of organs for transplantation by its nature prompts ethical dilemmas. For example, although there is an imperative to save human life and reduce suffering by maximising the supply of vital organs, there is an equally important obligation to ensure that the process by which we increase the supply respects the rights of all stakeholders. In a relatively unexamined practice in the USA, organs are procured from unrepresented decedents without their express consent. Unrepresented decedents have no known (...) healthcare wishes or advance care planning document; they also lack a surrogate. The Revised Uniform Anatomical Gift Act of 2006 sends a mixed message about the procurement of organs from this patient population and there are hospitals that authorise donation. In addition, in adopting the RUAGA, some states included provisions that clearly allow organ procurement from unrepresented decedents. An important unanswered question is whether this practice meets the canons of ethical permissibility. The current Brief Report presents two principled approaches to the topic as a way of highlighting some of the complexities involved. Concluding remarks offer suggestions for future research and discussion. (shrink)

Volume 20, Issue 2, February 2020, Page 49-50.

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

Defined as patients who ‘lack decision-making capacity and a surrogate decision-maker’, the unrepresented present a major quandary to clinicians and ethicists, especially in handling errors made in their care. A novel concern presented in the care of the unrepresented is how to address an error when there is seemingly no one to whom it can be disclosed. Given that the number of unrepresented Americans is expected to rise in the coming decades, and some fraction of them (...) will experience a medical error, creating protocols that answer this troubling question is of the utmost importance. This paper attempts to begin that conversation, first arguing that the precarious position of unrepresented patients, particularly in regards to errors made in their care, demands their recognition as a vulnerable patient population. Next, it asserts that the ethical obligation to disclose error still exists for the unrepresented because the moral status of error does not change with the presence or absence of surrogate decision-makers. Finally, this paper concludes that in outwardly acknowledging wrongdoing, a clinician or team leader can alleviate significant moral distress, satisfy the standards of a genuine apology, and validate the inherent and equivalent moral worth of the unrepresented patient. (shrink)

Unrepresented patients lack the capacity to make medical decisions for themselves, have no clear documentation of preferences for medical treatment, and have no surrogate decision maker or obvious candidate for that role. There is no consensus about who should serve as the decision maker for these patients, particularly regarding whether to continue or to limit life-sustaining treatment. Several authors have argued that ethics committees should play this role rather than the patient's treating physician, a common current default. (...) We argue that concerns about the adequacy of physicians as surrogates are either empirically unfounded or apply equally to ethics committees. We suggest that physicians should be the primary decision maker for the unrepresented because of their fiduciary duties toward their patients. As part of the process of fulfilling these duties, they should seek the advice of third parties such as ethic committees; but final end-of-life decision-making for the unrepresented should rest with the treating physician. (shrink)

Incapacitated adult patients are commonly divided into two groups for purposes of decision making; those with a surrogate and those without. Respectively, these groups are often referred to as represented and unrepresented, and the relative ethics of decision making between them raises two particular issues. The first issue involves the differential application of the best interests standard between groups. Second is the prevailing notion that representedness and unrepresentedness are categorical phenomena, though it is more aptly understood as a (...) multidimensional and continuous variable based on relational moral authority. This paper examines the nature of representedness as it relates to ethical norms of surrogate decision making. (shrink)

Unrepresented patients—people without capacity to make medical decisions who also lack a surrogate decision‐maker—form a large and vulnerable population within the United States health care system. The burden of unrepresentedness has rightly prompted widespread calls for more and better advance care planning, in which still‐healthy patients are encouraged to designate a surrogate decision‐maker and thus avoid the risk of becoming unrepresented. However, we observe that some patients, even with available social contacts and access to adequate (...) advance care planning services, simply decline to name a surrogate decision‐maker. We propose a novel concept of “informed refusal of representation” (“IRR”) to characterize the position held by some such patients, who are often overlooked in prior work on unrepresentedness. We then discuss physicians’ ethical obligations in the face of such a refusal and avenues by which physicians can support patients without surrogates in receiving goal‐concordant care. (shrink)

Background:In Ontario, Canada, patients who lack decision-making capacity and have no family or friends to act as substitute decision-makers currently rely on the Office of the Public Guardian and Trustee to consent to long-term care (nursing home) placement, but they have no legal representative for other placement decisions.Objectives:We highlight the current gap in legislation for difficult transition cases involving unrepresented patients and provide a novel framework for who ought to assist with making these decisions and how these (...) decisions ought to be made.Research design:This paper considers models advanced by Volpe and Steinman with regard to who ought to make placement decisions for unrepresented patients, as well as current ethical models for analyzing how these decisions should be made.Participants and research context:We describe an anonymized healthcare transition case to illustrate the fact that there is no legally recognized decision-maker for placement destinations other than long-term care facilities and to show how this impacts all stakeholders.Ethical considerations:The case provided is an anonymized vignette representing a typical transition case involving an unrepresented patient.Findings:As a result of a gap in provincial legislation, healthcare providers usually determine the appropriate placement destination without a clear framework to guide the process and this can cause significant moral distress.Discussion:We argue for a team decision-making approach in the short term, and a legislative change in the long-term, to respect the patient voice, evaluate benefit and risk, enhance collaboration between healthcare providers and patients, and promote social justice. We believe that our approach, which draws upon the strengths of interprofessional teams, will be of interest to all who are concerned with the welfare and ethical treatment of the patients for whom they care.Conclusions:One of the main strengths of our recommendation is that it provides all members of the healthcare team (including nurses, social workers, therapists, and others) an increased opportunity to advocate on behalf of unrepresented patients. (shrink)

Harrowing stories reported in the media describe Covid‐19 ravaging through families. This essay reports professional experiences of this phenomenon, family clustering, as encountered during the pandemic's spread across Southern California. We identify three ethical challenges following from it: Family clustering impedes shared decision‐making by reducing available surrogate decision‐makers for incapacitated patients, increases the emotional burdens of surrogate decision‐makers, and exacerbates health disparities for and the suffering of people of color at increased likelihood of experiencing family clustering. We propose that, (...) in response to these challenges, efforts in advance care planning be expanded, emotional support offered to surrogates and family members be increased, more robust state guidance be issued on ethical decision‐making for unrepresented patients, ethics consultation be increased in the setting of conflict following from family clustering dynamics, and health care professionals pay more attention to systemic and personal racial biases and inequities that affect patient care and the surrogate experience. (shrink)

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

Berger (2019) argues effectively that “representativeness is more aptly understood as a variable that is multidimensional and continuous based on relational moral authority,” and also makes some useful suggestions about how taking this observation seriously might require changes in current patterns of practice regarding surrogates. But the essay raises additional important questions about how the Best Interest Standard (BIS) should be used among unrepresented patients and other patients as well because many surrogates besides those who “have no (...) actionable knowledge of a patient’s preferences” find themselves in positions in which they need to determine, with the physician, what is in the patient’s best interests. In this commentary, we therefore provide support for the ethical superiority of BIS judgments made by a multi-stakeholder process (rather than solo decision-makers), and sketch a process by which such judgments might be made. (shrink)

Novel precision oncology trial designs, such as basket and umbrella trials, are designed to test new anticancer agents in more effective and affordable ways. However, they present some ethical concerns referred to scientific validity, risk-benefit balance and informed consent. Our aim is to discuss these issues in basket and umbrella trials, giving examples of two ongoing cancer trials: NCI-MATCH (National Cancer Institute – Molecular Analysis for Therapy Choice) and Lung-MAP (Lung Cancer Master Protocol) study. We discuss three ethical requirements for (...) clinical trials which may be challenged in basket and umbrella trial designs. Firstly, we consider scientific validity. Thanks to the new trial designs, patients with rare malignancies have the opportunity to be enrolled and benefit from the trial, but due to insufficient accrual, the trial may generate clinically insignificant findings. Inadequate sample size in study arms and the use of surrogate endpoints may result in a drug approval without confirmed efficacy. Moreover, complexity, limited quality and availability of tumor samples may not only introduce bias and result in unreliable and unrepresentative findings, but also can potentially harm patients and assign them to an inappropriate therapy arm. Secondly, we refer to benefits and risks. Novel clinical trials can gain important knowledge on the variety of tumors, which can be used in future trials to develop effective therapies. However, they offer limited direct benefits to patients. All potential participants must wait about 2 weeks for the results of the genetic screening, which may be stressful and produce anxiety. The enrollment of patients whose tumors harbor multiple mutations in treatments matching a single mutation may be controversial. As to informed consent – the third requirement we discuss, the excessive use of phrases like “personalized medicine”, “tailored therapy” or “precision oncology” might be misleading and cause personal convictions that the study protocol is designed to fulfill the individual health-related needs of participants. We suggest that further approaches should be implemented to enhance scientific validity, reduce misunderstandings and risks, thus maximizing the benefits to society and to trial participants. (shrink)

Being a patient and living a life -- Clinical space and traits of healing -- False starts and frequent failures -- Three journeys : A.'Ibuprofen and love', B. 'Staying tuned up', C. 'We all want the same things' -- Being a patient : the moral field -- Rethinking healthcare ethics : the patient's moral authority.

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of health (...) care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of health (...) care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

Background:The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary.Research objective:This study aimed to offer a comprehensive and clear definition of patient advocacy.Research design:A total of 46 articles and 2 books published between 1850 and 2016 and related to the concept of (...) patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach.Ethical considerations:This study was approved by the Research Ethics Committee of Tarbiat Modares University.Findings:The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources).Discussion and conclusion:The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.

Recently, Jardas _et al_ have convincingly defended the patient preference predictor (PPP) against a range of autonomy-based objections. In this response, I propose a new autonomy-based objection to the PPP that is not explicitly discussed by Jardas _et al_. I call it the ‘objection from higher-order preferences’. Even if this objection is not sufficient reason to reject the PPP, the objection constitutes a pro tanto reason that is at least as powerful as the ones discussed by Jardas _et al._.

In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling action. Anthony (...) Giddens’ description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. (shrink)

'The Patient as Victim and Vector' is jointly written by four authors at the University of Utah with expertise in bioethics health law, and both clinical practice and public health policy concerning infectious disease.

The Patient in the Family diagnoses the ways in which the worlds of home and hospital misunderstand each other. The authors explore how medicine, through its new reproductive technologies, is altering the stucture of families, how families can participate more fully in medical decision-making, and how to understand the impact on families of medical advances to extend life but not vitality.

Walton offers a comprehensive, flexible model for physician-patient decision making, the first such tool designed to be applied at the level of each particular case. Based on Aristotelian practical reasoning, it develops a method of reasonable dialogue, a question- and-answer process of interaction leading to informed consent on the part of the patient, and to a decision--mutually arrived at--reflecting both high medical standards and the patient's felt needs. After setting forth his model, he applies it to three vital ethical issues: (...) acts of omission, the cessation of treatment, and possible side effects of treatments. In the final chapter, Walton shows how his method functions in light of the real-life complexities of the clinical encounter and how it bears on ethical questions concerning health-care policy, attitudes toward treatment and toward the medical profession, reasonableness of expectations, and the setting of realistic goals of treatment. (shrink)

Background Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).Methods Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with SCD; 21 (...) participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the study participants’ perceptions of the potential advancement of NIPT for screening SCD in the fetus. Data were analyzed using NVivo 12 qualitative software.Results The themes revealed the complexities involving the intersectional lived experiences of SCD, prenatal care, lack of synergy among health providers, and NIPT decision-making. The results further revealed that even when Black women have shared commonalities in their lived experiences while navigating SCD and motherhood, their perceptions of NIPT screening technologies are divergent.Conclusion Expanding the ethical discourse on the social implications of NIPT is critical to fully elucidate how Black women perceive NIPT’s utility, particularly as NIPT advances to screen for SCD in the fetus. Neglecting to include Black women with genetic conditions in empirical studies on NIPT may contribute to ongoing health inequities and limit and constrain reproductive choices among Black women with and without SCD. (shrink)

Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in a lukewarm fashion by (...) most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'. The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients. In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better. (shrink)

A lively topic of debate in decision theory over recent years concerns our understanding of the different risk attitudes exhibited by decision makers. There is ample evidence that risk-averse and risk-seeking behaviours are widespread, and a growing consensus that such behaviour is rationally permissible. In the context of clinical medicine, this matter is complicated by the fact that healthcare professionals must often make choices for the benefit of their patients, but the norms of rational choice are conventionally grounded in (...) a decision maker’s own desires, beliefs and actions. The presence of both doctor and patient raises the question of whose risk attitude matters for the choice at hand and what to do when these diverge. Must doctors make risky choices when treating risk-seeking patients? Ought they to be risk averse in general when choosing on behalf of others? In this paper, I will argue that healthcare professionals ought to adopt a deferential approach, whereby it is the risk attitude of the patient that matters in medical decision making. I will show how familiar arguments for widely held anti-paternalistic views about medicine can be straightforwardly extended to include not only patients’ evaluations of possible health states, but also their attitudes to risk. However, I will also show that this deferential view needs further refinement: patients’ higher-order attitudes towards their risk attitudes must be considered in order to avoid some counterexamples and to accommodate different views about what sort of attitudes risk attitudes actually are. (shrink)

Patient preference predictors (PPPs) promise to provide medical professionals with a new solution to the problem of making treatment decisions on behalf of incapacitated patients. I show that the use of PPPs faces a version of a normative problem familiar from legal scholarship: the problem of naked statistical evidence. I sketch two sorts of possible reply, vindicating and debunking, and suggest that our reply to the problem in the one domain ought to mirror our reply in the other. The (...) conclusion is thus conditional: if we think the problem of naked statistical evidence is a serious problem in the legal domain, then we should be concerned about the symmetrical problem for PPPs. (shrink)

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical (...) evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)

Maintenance and promotion of patient dignity is an ethical responsibility of healthcare workers. The aim of this study was to investigate patient dignity and related factors in patients with heart failure. In this qualitative study, 22 patients with heart failure were chosen by purposive sampling and semi-structured interviews were conducted until data saturation. Factors related to patient dignity were divided into two main categories: patient/care index and resources. Intrapersonal features (inherent characteristics and individual beliefs) and interpersonal interactions (communication, (...) respect, enough information, privacy, and authority) were classified as components of the patient/care index category. Human resources (management and staff) and environmental resources (facilities and physical space) were classified as components of the resources category. The results will increase healthcare staff's understanding of patient dignity and its related factors, and provide information regarding the development of systems and processes that support patients in ways that are consistent with these values. (shrink)

The puzzling case of the broken arm -- Hernias, diets, and drugs -- Why physicians cannot know what will benefit patients -- Sacrificing patient benefit to protect patient rights -- Societal interests and duties to others -- The new, limited, twenty-first-century role for physicians as patient assistants -- Abandoning modern medical concepts: doctor's "orders" and hospital "discharge" -- Medicine can't "indicate": so why do we talk that way? --"Treatments of choice" and "medical necessity": who is fooling whom? -- Abandoning (...) informed consent -- Why physicians get it wrong and the alternatives to consent: patient choice and deep value pairing -- The end of prescribing: why prescription writing is irrational -- The alternatives to prescribing -- Are fat people overweight? -- Beyond prettiness: death, disease, and being fat -- Universal but varied health insurance: only separate is equal -- Health insurance: the case for multiple lists -- Why hospice care should not be a part of ideal health care I: the history of the hospice -- Why hospice care should not be a part of ideal health care II: hospice in a postmodern era -- Randomized human experimentation: the modern dilemma -- Randomized human experimentation: a proposal for the new medicine -- Clinical practice guidelines and why they are wrong -- Outcomes research and how values sneak into finding of fact -- The consensus of medical experts and why it is wrong so often. (shrink)

Deep brain stimulation is an experimental procedure for treatment-resistant depression. Some results show promise, but blinded trials had limited success. Ethical questions center on vulnerability: especially on whether depressed patients can weigh the risks and benefits effectively, whether depression causes “desperation,” and whether media portrayals create unrealistic hopes. We interviewed 24 psychiatric inpatients with treatment-resistant depression, qualitatively analyzing their comments. Most had minimal interest in deep brain stimulators. Some might consider them if their depression worsened, if alternatives were exhausted, (...) or if the evidence were stronger. Fears focused on the surgery, adverse effects, and the novelty of the device. Patients felt the depression interfered with their ability to weigh the risks and benefits. Patients seemed highly attuned to the risks, and were skeptical that the treatment would be effective. We conclude that ethical concerns about vulnerability remain, yet patients with treatment-resistant depression were thoughtful and cautious about trying a novel therapy. (shrink)

Theoretical models for patient-physician communication in clinical practice are frequently described in the literature. Respecting patient autonomy is an ethical problem the physician faces in a medical emergency situation. No theoretical physician-patient model seems to be ideal for solving the communication problem in clinical practice. Theoretical models can at best give guidance to behavior and judgement in emergency situations. In this article the premises of autonomous treatment decisions are discussed. Based on a case-report we discuss different genuine efforts the physician (...) can do to uncover treatment refusal and respect patient autonomy in an emergency situation. Autonomy requires competence and in emergency medicine time does not allow intimate exploration of patient competence and reasons for treatment refusal. We find that the physician must base her decision on a firm theoretical base combined with a practical and realistic view of the patient's situation on a case to case basis. (shrink)

Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy on the basis (...) of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI‐based policies. (shrink)

When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that even (...) if such a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient’s (former) autonomy since it draws on the ‘wrong’ kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently ‘fine-tuned’ on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient’s preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient’s own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies. (shrink)

One less obvious impact of legal bilingualism in a postcolonial jurisdiction like Hong Kong is an increasing trend of unrepresented litigants. Since their lack of legal knowledge often places them at a disadvantage and poses numerous problems in court, the government has established the resource centre for unrepresented litigants to offer them information about legal procedure. This paper evaluates the usefulness of the Chinese official reference materials at the centre in equipping laymen for civil litigation. As a first (...) point of contact between unrepresented litigants and the law, these leaflets have a direct impact on the users’ understanding of litigation procedures and their courtroom performance. This paper argues that the leaflets suffer from two major problems: incomprehensibility of language and lack of structure. Problems involved in include inconsistency in terminology, problematic translation, and language complexity arising from the use of odd collocation, unusual words, difficult legal terminology and confusing parts of speech; whereas in , information is found to be scattered and disorganised. To improve readability, the paper suggests using plain language, and providing checklists of documents, and a legal glossary. Cross-jurisdiction practices will be examined to show how unrepresented litigants’ access to justice may be facilitated. (shrink)

Abstract:Respect for persons protects patients regarding their own healthcare decisions. Patient informed choice for altruism (PICA) is a proposed means for a fully autonomous patient with decisionmaking capacity to limit his or her own treatment for altruistic reasons. An altruistic decision could bond the patient with others at the end of life. We contend that PICA can also be an advance directive option. The proxy, family, and physicians must be reminded that a patient’s altruistic treatment refusal should be respected.

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, the turn to (...) a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

The clinical application of the concept of patient autonomy has centered on the ability to deliberate and make treatment decisions (decisional autonomy) to the virtual exclusion of the capacity to execute the treatment plan (executive autonomy). However, the one-component concept of autonomy is problematic in the context of multiple chronic conditions. Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry out tasks associated with chronic (...) care. The purpose of this article is to call for a two-component re-conceptualization of autonomy and to argue that the clinical assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision-making and autonomous execution of the agreed-upon treatment plan. We explain how the concept of autonomy should be expanded to include both decisional and executive autonomy, describe the biopsychosocial correlates of the two-component concept of autonomy, and recommend diagnostic and treatment strategies to support patients with deficits in executive autonomy. (shrink)