Background In recent years, patient advocacy has emerged as a prominent concept within healthcare. How nursing students decide what is best for their patients is not well understood. Objective The objective is to examine nursing students' views on doing what is best for patients during their clinical experiences and how they seek to establish patient interests when providing care. Research questions guiding the interview were as follows: (1) What are nursing students' perceptions of patient interests? (2) What factors (...) influence nursing students' perceptions of advocating for patient’s interests? Research design Qualitative descriptive research using thematic analysis. Participants and research context Data was collected through individual online interviews with nine nursing students with clinical experience. Ethical considerations The study was approved by the University Research Ethics Committee. Participants provided digital informed consent. Results The students asserted that they are able to understand the patients' interests by placing emphasis on the patients' needs. They believe that it is crucial to adopt a collaborative strategy for the provision of care to meet these requirements. In addition, some of them expressed concern over the most effective methods of advocating for the interests of patients. Three themes were identified. (1) Focussing on patient needs first, (2) taking a collective approach, and (3) learning how to advocate. Conclusions Students understand and value the ethical commitments associated with advocating for the patient's best interest by considering factors such as prioritising the patient's needs, adopting a strategy that involves everyone, and acquiring the ability to undertake the advocacy role. Additionally, nursing education strategies in clinical contexts require additional study to inspire students to do what is in their patient’s best interests. (shrink)

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

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

In this issue of the Hastings Center Report, Moti Gorin, Steven Joffe, Neal Dickert, and Scott Halpern offer a comprehensive defense of the use of nudging techniques in the clinical context, with the aim of promoting the best interests of patients. Their argument is built on three important claims: Nudging is ubiquitous and inescapable in clinical choice situations, and there is no neutral way of informing patients about their treatment choices; many patients do not have authentic preferences concerning their (...) treatment choices, and those that do can easily resist nudging; and, finally, since many people lack authentic preferences and those that do can still act on their preferences, nudging in the patients’ best interest is justified. I agree with the authors that if these three claims stand up to scrutiny, then they will provide a justification for many types of clinical nudging. I am, however, skeptical as to whether the claims can be sustained, despite the valiant efforts of Gorin and colleagues. (shrink)

The principle that physicians should always act in the best interests of the present patient is widely endorsed. At the same time, and often within the same document, it is recognised that there are appropriate exceptions to this principle. Unfortunately, little, if any, guidance is provided regarding which exceptions are appropriate and how they should be handled. These circumstances might be tenable if the appropriate exceptions were rare. Yet, evaluation of the literature reveals that there are numerous exceptions, several (...) of which pervade clinical medicine. This situation leaves physicians without adequate guidance on when to allow exceptions and how to address them, increasing the chances for unfairness in practice. The present article considers the range of exceptions, illustrates how the lack of guidance poses ethical concern and describes an alternative account of physician obligations to address this concern. (shrink)

On one conception of “best interest” there can only be one course of action in a given situation that is in a person’s best interest. In this paper we will first consider what theories of “best interest” and rational decision-making that can lead to this conclusion and explore some of the less commonly appreciated implications of these theories. We will then move on to consider what ethical theories that are compatible with such a view (...) and explore their implications. In the second part of the paper we will explore a range of possible criticisms of these views. And in the third part we will criticise the view that a court is always or even often in a good position to decide what the patient’s best interest is. In the fourth and final part we will put forward a reconstructive proposal aimed at saving whatever is sound in the “best interest” conception. (shrink)

In their article, van Gils Schmidt and Salloch defend the claim that physicians have a duty to protect the climate. The logic of the argument in broad terms is that (i) there is a relationship between climate change and the burden of disease, (ii) the healthcare sector is a significant emitter of global greenhouse gasses, thereby enhancing the burden of disease and (iii) since doctors are advocates of health and stakeholders in the healthcare sector, they have a duty to respond (...) to climate change. The authors recognise the ‘ethical basis for the claim of healthcare professionals having a special responsibility in climate change is far from being obvious’. The theoretical framework they choose for making this tentative link more apparent is Korsgaard’s theory of practical identities. The main argument of the authors seems to be that practical identities are pluralistic—a person can identify as a physician and environmentalist simultaneously—and the normative positions attributable to these identities may come into conflict. More than that, they claim that being an environmentalist is increasingly becoming …. (shrink)

Contrary to the usual discussion of lying or deceiving in medical ethics literature where the lying or deceiving is done by the doctor or surgeon, this paper deals with lying or deceiving on the part of the patient. Three cases involving HIV-infected male homosexual or bisexual persons are presented. In each case the patient deceives or wants the doctor to deceive a third party on his behalf. Are such deceptions or lies expressions of compassion? Are they in the patient's (...) class='Hi'>best interests? Do they compromise the doctor's integrity? It is submitted that societal attitudes towards male homosexual acts were internalised by the men described in these cases. Thus, a dichotomy was created between the private life and the public image. Fear of condemnation by the doctor or others restricted communication towards the goal of the maintenance of the patient's health. The lack of trust which inhibits truth-telling results in mutual and progressive isolation and impedes the provision of optimal care. (shrink)

The American Journal of Bioethics, Volume 12, Issue 6, Page 17-20, June 2012.

© 2015 NATCO, The Organization for Transplant Professionals.Despite the known benefits of kidney transplant, less than 30% of the 615 000 patients living with end-stage renal disease in the United States have received a transplant. More than 100 000 people are presently on the transplant waiting list. Although the shortage of kidneys for transplant remains a critical factor in explaining lower transplant rates, another important and modifiable factor is patients' lack of comprehensive education about transplant. The purpose of this article (...) is to provide an overview of known best practices from the broader literature that can be used as an evidence base to design improved education for ESRD patients pursuing a kidney transplant. Best practices in chronic disease education generally reveal that education that is individually tailored, understandable for patients with low health literacy, and culturally competent is most beneficial. Effective education helps patients navigate the complex health care process successfully. Recommendations for how to incorporate these best practices into transplant education design are described. Providing more ESRD patients with transplant education that encompasses these best practices may improve their ability to make informed health care decisions and increase the numbers of patients interested in pursuing transplant. (shrink)

Next SectionBackground: Physicians face ethical difficulties daily, yet they seek ethics consultation infrequently. To date, no systematic data have been collected on the strategies they use to resolve such difficulties when they do so without the help of ethics consultation. Thus, our understanding of ethical decision making in day to day medical practice is poor. We report findings from the qualitative analysis of 310 ethically difficult situations described to us by physicians who encountered them in their practice. When facing such (...) situations, the physicians sought to avoid conflict, obtain assistance, and protect the integrity of their conscience and reputation, as well as the integrity of the group of people who participated in the decisions. These goals could conflict with each other, or with ethical goals, in problematic ways. Being aware of these potentially conflicting goals may help physicians to resolve ethical difficulties more effectively. This awareness should also contribute to informing the practice of ethics consultation. Objective: To identify strategies used by physicians in dealing with ethical difficulties in their practice. Design, setting, and participants: National survey of internists, oncologists, and intensive care specialists by computer assisted telephone interviews (n = 344, response rate = 64%). As part of this survey, we asked physicians to tell us about a recent ethical dilemma they had encountered in their medical practice. Transcripts of their open-ended responses were analysed using coding and analytical elements of the grounded theory approach. Main measurements: Strategies and approaches reported by respondents as part of their account of a recent ethical difficulty they had encountered in their practice. Results: When faced with ethical difficulties, the physicians avoided conflict and looked for assistance, which contributed to protecting, or attempting to protect, the integrity of their conscience and reputation, as well as the integrity of the group of people who participated in the decisions. These efforts sometimes reinforced ethical goals, such as following patients’ wishes or their best interests, but they sometimes competed with them. The goals of avoiding conflict, obtaining assistance, and protecting the respondent’s integrity and that of the group of decision makers could also compete with each other. Conclusion: In resolving ethical difficulties in medical practice, internists entertained competing goals that they did not always successfully achieve. Additionally, the means employed were not always the most likely to achieve those aims. Understanding these aspects of ethical decision making in medical practice is important both for physicians themselves as they struggle with ethical difficulties and for the ethics consultants who wish to help them in this process. (shrink)

This article investigates a high-profile and ongoing dilemma for healthcare professionals, namely whether the existence of a duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a (...) putative duty of care to the patient’s close relatives could coexist in this context. This article examines whether embracing the concept of coexisting duties could enable HCPs to respect duties in line with their clinical judgement, thereby providing legal support and clarity to professionals to allow them to provide the best possible genetics service to both the patient and their family. We argue that these dual duties, framed as a novel, composite duty to consider the interests of genetic relatives, could allow HCPs to exercise and act on their professional judgements about the relative value of information to family members, without fears of liability for negligence or breach of confidence. (shrink)

Context The attitudes of medical professionals towards physician assisted dying have been widely discussed. Less explored is the level of agreement among physicians on the possibility of ‘rational suicide’—a considered suicide act made by a sound mind and a precondition of assisted dying legislation. Objective To assess attitudes towards rational suicide in a representative sample of senior doctors in England and Wales. Methods A postal survey was conducted of 1000 consultants and general practitioners randomly selected from a commercially available database. (...) The main outcome of interest was level of agreement with a statement about rational suicide. Results The corrected participation rate was 50%; 363 questionnaires were analysed. Overall 72% of doctors agreed with the possibility of rational suicide, 17% disagreed, and 11% were neutral. Doctors who identified themselves as being more religious were more likely to disagree. Some doctors who disagreed with legalisation of physician assisted suicide nevertheless agreed with the concept of rational suicide. Conclusions Most senior doctors in England and Wales feel that rational suicide is possible. There was no association with specialty. Strong religious belief was associated with disagreement, although levels of agreement were still high in people reporting the strongest religious belief. Most doctors who were opposed to physician assisted suicide believed that rational suicide was possible, suggesting that some medical opposition is best explained by other factors such as concerns of assessment and protection of vulnerable patients. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Adolf Meyer: Psychiatric AnarchistS. Nassir Ghaemi (bio)KeywordsMeyer, biopsychosocial model, Jaspers, pluralism, philosophy, psychiatryThey had weekly lunches in 1920s New York City: In one door stepped a stooped philosopher, with a mustache and a twinkle, perhaps ruminating on some recent Marxist theory; in the other door came the elegant Swiss physician, goateed and erudite. Every week, for a time, John Dewey (leader of American pragmatism) and Adolf Meyer (dean of (...) mid-twentieth century American psychiatry and long-time chair of the Johns Hopkins psychiatry department) lunched together and, somewhere in those conversations—one might imagine—the field of philosophy and psychiatry was born (Meyer 1948, 152).Yet pragmatism—as a proper school of philosophy—does not capture Meyer’s psychiatry. Rather, the core of his thinking, in my view, is to be found in a vague term that deserves analysis: eclecticism.EclecticismIt has been said that eclecticism is a vice in theory but a virtue in practice (Stone 1981), which highlights why so many are attracted to it. Deep down, practitioners just want to be free: They believe that their freedom of choice will tailor treatments best to patients and thus result in best outcomes. As a conceptual theory for psychiatry, eclecticism is a model that views any theory or method as potentially correct, but no theory or method as definitively incorrect. There is no way to avoid an “anything goes” practice with eclecticism: It is—to use a political analogy—an anarchism of mind.William James once remarked that the basis for all philosophies lies in the personalities of philosophers. So it was with Meyer’s eclecticism: congenial personally, he seemed congenitally incapable of disagreeing with any person. Any idea, even the most unusual, would receive a respectful hearing from Meyer. (Double brings out new, excellent documentary evidence of this extreme indecision in the drafts of Meyer’s unsent letters to the behaviorist John Watson.) Although quaint and commendable pedagogically, this excessive open mindedness left American psychiatry—so dependent on Meyer—prey to hard-headed biological radicals and psychoanalytic dogmatists. This is where his eclecticism failed us.Enabling Biological ExtremismMeyer played a key role in legitimizing extreme biological approaches. In addition to his interest in insulin coma (which Double mentions), Meyer enabled the popularization of colectomy and frontal [End Page 341] lobotomy. Psychiatric colectomy, developed by Henry Cotton, was based on the focal toxin theory of mental illness—the idea that mental illness was caused by toxins released by bacteria in the body, the specific locations of which where were the colon and rotted teeth. In one hundred case reports, with mostly short-term follow-up, published in his prominent text, The Defective Delinquent and Insane (Cotton 1921), Cotton laid out his case, which Meyer legitimized by writing a generous foreword. Meyer’s authority was powerful enough to render Cotton’s limited evidence base much more credible than it might otherwise have been. In the 1920s and 1930s, tens of thousands colectomies and full mouth teeth extractions were conducted in patients with mental illness. (Meyer himself sometimes recommended it).1The other biological extremist story is more famous. In a 1936 conference, with Meyer in attendance, the neurologist Walter Freeman presented, for the first time, cases of refractory schizophrenia treated with a new method: frontal lobotomy. Psychoanalyst attendees protested that Freeman was proposing nothing more than mutilation of the brain; yet Meyer intervened in favor of Free-man (“I am not antagonistic to this work, but find it very interesting” [El-Hai 2005]). Unfortunately, Freeman, like Cotton, was a dogmatist: Over time, he performed frontal lobotomy more and more extensively, not just as a treatment of last resort in the most ill schizophrenics (as in the first cases presented to Meyer), but later as a treatment of first resort for the mildest mood disorders. (By 1950 Freeman had personally conducted 2400 transorbital lobotomies, an “office procedure” that allowed him to lobotomize a patient in 15 minutes [El-Hai 2005]).2Lest my critique of Meyer in that era be seen as a Whiggish interpretation of history (the claim that we are so much smarter than those shrinks of the past; in fact I think... (shrink)

Nonadherence to treatment continues to be one of psychiatry's greatest challenges. To improve adherence and thus improve the care of patients, clinicians and patients' family members sometimes resort to hiding medication in food or drink, a practice referred to as covert/ surreptitious medication. The practice of covert drug administration in food and beverages is well known in the treatment of psychiatrically ill world-wide but no prevalence rates exist. Covert medication may seem like a minor matter, but it touches on legal (...) and ethical issues of a patient's competence, autonomy, and insight. Medicating patients without their knowledge is not justifiable solely as a shortcut for institutions or families wishing to calm a troublesome patient and thus alleviate some of the burdens of care giving. The paramount principle is ensuring the well-being of a patient who lacks the competence to give informed consent. Ethically, covert/surreptitious administration can be seen as a breach of trust by the doctor or by family members who administer the drugs. Covert medication contravenes contemporary ethical practice. Legally, treatment without consent is permissible only where common law or statute provides such authority. The practice of covert administration of medication is not specifically covered in the mental health legislation in developing countries. Many of the current dilemmas in this area have come to public attention because of two important developments in medical ethics and the law - the increasing importance accorded to respect for autonomy and loss of the parens patriae jurisdiction of the courts [parens patriae means 'parent of the country'; it permitted a court to consent or refuse treatment on behalf of an 'incapacity', or alternatively to appoint a guardian with such powers]. (shrink)

In this issue of JCE, Douglas Diekema argues that the best interest standard (BIS) has been misemployed to serve two materially different functions. On the one hand, clinicians and parents use the BIS to recommend and to make treatment decisions on behalf of children. On the other hand, clinicians and state authorities use the BIS to determine when the government should interfere with parental decision-making authority. Diekema concedes that the BIS is appropriately used to “guide” parents in making (...) medical treatment decisions for their children. But he argues that the BIS is inappropriately used as a “limiting” standard to determine when to override those decisions. Specifically, Diekema contends that the BIS “does not represent the best means for determining when one must turn to the state to limit parental action.” He argues that this limiting function should be served by the harm principle instead of by the BIS.I contend that we should not reassign the BIS’s limiting function to the harm principle. In this article I make two arguments to support my position. First, the BIS has effectively served, and can serve, both guiding and limiting functions. Second, the harm principle would be an inadequate substitute. It cannot serve the limiting function as well as the more robust BIS. (shrink)

Two of the most important concepts in medicine are “curing” and “caring”. Patients should enter clinical trials with the understanding that they benefit from the treatment or that there may be some benefit to others. In many cancer trials, for example, the best that can be hoped for is a prolongation of life. Whether or not life is prolonged, we argue that there exists an obligation which can be termed a “bond of responsibility” to provide appropriate palliative care within (...) the patient’s own cultural context.The Declaration of Helsinki,1 the principal code governing the conduct of medical research, shows this “bond of responsibility” to be at its core. A number of statements stand out: “the health of my patient will be my first consideration”2 and “a physician shall only act in a patient’s best interest when providing medical care which might have the effect of weakening the physical and mental …. (shrink)

in a scientific way, and takes the patient and his family into his confidence. Thus he learns something from the sufferer, and at the same time instructs the invalid to the best of his power. He does not give his prescriptions until he has won the patient's support, and when he has done so, he steadilY aims at producing complete restoration to health by persuading the sufferer in to compliance (Laws 4. 720 b-e, [28]). This passage shows the perennial (...) nature of the problems of treating the patient as a person. It shows as well the historical'depth of philosophical interest in medicine. The history of philosophy includes more reflections upon medical ethics than the casual reader might suspect. Many of these reflections are pertinent to contemporary issues such as abortion and population control. Plato, for example, recommends abortion in cases of incest (Republic 5. 461c); and Aristotle argues for letting seriously deformed children die, while forbidding infanticide as a means of popUlation control, suggesting instead the use of early abortions. 'As to the exposure in rearing of children, let there be a law that no deformed child shall live, but that on the ground of an excess in the number of children... let abortion be procured before sense and life have begun; what mayor may not be lawfully done in these cases depends on the question of life and sensation' (Politics VII, 16,335 b20-26, [4]). (shrink)

The cognitive and behavioral functions of the frontal lobes have been of great interest to neuroscientists, neurologists, psychologists and psychiatrists. Recent technical advances have made it possible to trace their neuroanatomical connections more precisely and to conduct evoked potential and neuroimaging studies in patients. This book presents a broad and authoritative synthesis of research progress in this field. It encompasses neuroanatomical studies; experiments involving temporal organization and working memory tasks in non-human primates; clinical studies of patients following frontal lobe (...) excisions for intractable epilepsy; metabolic imaging in schizophrenia and affective disorder; neurobehavioral studies of patients with dementia, frontal lobe tumors, and head injuries; magnetic resonance imaging methods for studying human frontal lobe anatomy; theoretical approaches to describing frontal lobe functions; and rehabilitation of patients with frontal lobe damage including their core problem of diminished awareness. Written by a distinguished group of neuroscientists, psychologists and clinicians, Frontal Lobe Function and Dysfunction provides the best current source of information on this region of the brain and its role in cognition, behavior and clinical disorders. (shrink)

The fiduciary nature of the patient-physician relationship requires clinicians to act in the best interest of their patients. Patients are vulnerable due to their health status and lack of medical knowledge, which makes them dependent on the clinicians’ expertise. Competent patients, however, may reject the recommendations of their physician, either refusing beneficial medical interventions or procedures based on their personal views that do not match the perceived medical indication. In some instances, the patients’ refusal may jeopardize their health (...) or life but also compromise the clinician’s moral responsibility to promote the patient’s best interests. In other words, health professionals have to deal with patients whose behavior and healthcare decisions seem counterproductive for their health, or even deteriorate it, because of lack of knowledge, bad habits or bias without being the patients’ free voluntary choice. The moral dilemma centers on issues surrounding the limits of the patient’s autonomy and the clinician’s role to promote the well-being of the patient. In this paper we argue that the use of manipulative strategies, albeit considered beneficent, defeats the purpose of patient education and therefore should be rejected; and the appropriate strategy is to empower patients through patient education which enhances their autonomy and encourages them to become full healthcare partners as opposed to objects of clinical intervention or entities whose values or attitudes need to be shaped and changed through education. First, we provide a working definition of the concept of patient education and a brief historical overview of its origin. Second, we examine the nature of the patient-physician relationship in order to delineate its boundaries, essential for understanding the role of education in the clinical context. Third, we argue that patient education should promote self-rebiasing, enhance autonomy, and empower patients to determine their therapeutic goals. Finally, we develop a moral framework for patient education. (shrink)

Nurses and midwives are part of health care in all the stages of our lives from preconception to death. Recent scientific advances have introduced new techniques of screening and diagnosis linked to stem cell isolation and therapies. These could affect us at any age and therefore nurses will be involved as carers and patients advocates for these techniques. In this article stem cell techniques and therapies are outlined, as well as some of the ethical challenges faced by various nursing groups, (...) whether in adult, learning difficulties, mental health, paediatric, primary care, public health or health visiting areas. Nurses have to understand the ethical issues and the rights of all parties (donor, recipient and families), which may conflict with each other, to be able to weigh up the benefits and costs to each group involved. Answers have to be found on a case-by-case basis within local moral frameworks and law. Nurses represent all parties in these therapies and act as advocates for every patient group. They need to act in an interprofessional environment to promote the best interests of all their clients, both clinically and ethically. (shrink)

The involuntary admission or treatment of a mentally ill individual is highly controversial, as it may be argued that such intervention infringes on individual autonomy and the right to choose a particular treatment. However, this argument must be balanced with the need to provide immediate healthcare services to a vulnerable person who cannot or will not make a choice in his or her own best interests at a particular time. A study carried out in Gauteng Province, South Africa, highlighted (...) the fact that the annual rate of involuntary admissions increased by almost double from 2007 to 2008. This could indicate that healthcare providers are not treating patients without their consent only when this is absolutely necessary. Alternatively, it could indicate that healthcare professionals are more aware of the provisions of the Mental Health Care Act and relevant national policy guidelines. Or it could suggest that more patients are presenting with mental illnesses or disorders that require their involuntary admission. It remains for strategies to be developed that change negative perceptions and inequities for individuals with mental illness. Above all, the strategies should be underpinned by inalienable respect for mentally ill individuals – a concept that was blatantly disregarded in the Life Esidimeni case. In this article, we highlight the functions of mental health review boards and their accountability where involuntary admissions are concerned, while emphasising the protections for mentally ill persons as a vulnerable population group, as set out in the SA Constitution. (shrink)

In medical practice, the doctrine of informed consent is generally understood to have priority over the medical practitioner’s duty of care to her patient. A common consequentialist argument for the prioritisation of informed consent above the duty of care involves the claim that respect for a patient’s free choice is the best way of protecting that patient’s best interests; since the patient has a special expertise over her values and preferences regarding non-medical goods she is ideally (...) placed to make a decision that will protect her interests. In this paper I argue against two consequentialist justifications for a blanket prioritisation of informed consent over the duty of care by considering cases in which patients have imperfect access to their overall best interests. Furthermore, I argue that there are cases where the mere presentation of choice under the doctrine of informed consent is detrimental to patient best interests. I end the paper by considering more nuanced approaches to resolving the conflict between informed consent and the duty of care and consider the option of permitting patients to waive informed consent. (shrink)

BackgroundHospitalized older adults frequently have impaired cognition and must rely on surrogates to make major medical decisions. Ethical standards for surrogate decision making are well delineated, but little is known about what factors surrogates actually consider when making decisions.ObjectivesTo determine factors surrogate decision makers consider when making major medical decisions for hospitalized older adults, and whether or not they adhere to established ethical standards.DesignSemi-structured interview study of the experience and process of decision making.SettingA public safety-net hospital and a tertiary referral (...) hospital in a large city in the Midwest United States.ParticipantsThe study included 35 surrogates with a recent decision-making experience for an inpatient aged 65 or older.MeasurementsThe key factors that surrogates considered when making decisions. Interview transcripts were coded and analyzed using the grounded theory method of qualitative analysis.ResultsSurrogates considered patient-centered factors and surrogate-centered factors. Patient-centered factors included: respecting the patient’s input, using past knowledge of the patient to infer the patient’s wishes, and consider ing what is in the patient’s best interests. Some surrogates expressed a desire for more information about the patient’s prior wishes. Surrogate-centered factors included: surrogate’s wishes as a guide, surrogate’s religious beliefs and/or spirituality, surrogate’s interests, and family consensus.ConclusionOur study indicates that surrogate decision making is more complex than the standard ethical models, which are limited to considerations of the patient’s autonomy and beneficence. Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences, models of surrogate decision making must account for these additional considerations. Surrogates’ desire for more information about patients’ preferences suggests a need for greater advance care planning. (shrink)

HIV/AIDS is a major public health problem in Africa. Stigmatization, discrimination and lack of appropriate health care are among the commonest challenges that HIV infected persons and their families face. It has been suggested that among the tools available in the fight against stigmatization and discrimination is public disclosure of a person’s HIV seropositive status. While public disclosure of HIV status has a place in the fight against HIV and AIDS, especially by resulting in behavioural change among people who know (...) of an HIV infected person, we argue that such disclosure also has potential attendant harms. The posthumous disclosure of HIV status is particularly problematic. Public disclosure should be accompanied by appropriate individual counselling and preparation of the community to deal with the situation, and should have regard for cultural sensitivity after consideration of the risks and benefits to individuals, families and the community. Health practitioners should keep in mind that their main duty is to the best interest of the patient, the family and the community, in that order. (shrink)

A questionnaire relating to attitudes towards setting economic priorities within the health care system was sent to all 151 general practitioners in Northern Norway. Of these, 109 (72 per cent) responded. Ninety-six per cent of the respondents agreed or partly agreed that the setting of economic priorities within the health care system was necessary. Ninety-three per cent had experienced a conflict between their responsibility towards the individual patient and the requirement for them to manage the health budget. The responses suggest (...) that doctors act more in the interests of their patient than the interests of society. However, 68 per cent reported having refrained from giving the best treatment to patients because it was too expensive. As many as 60 per cent of the respondents wanted more public guidelines. Only 10 per cent wanted doctors to have more influence in difficult questions arising from setting priorities. (shrink)

Supererogation can be distinguished from altruism, in that the former is located in the category of duty but exceeds the strict requirements of duty, whereas altruism belongs to a different moral category from duty. It follows that doctors do not act altruistically in their professional roles. Individual doctors may sometimes show supererogation, but supererogation is not a necessary feature of the medical profession. The aim of medicine is to act in the best interests of patients. This aim involves neither (...) supererogation nor even the moral quality of beneficence. It is simply a job description. Morality enters medicine through the quality of the individual doctor's work, not by the definition of that work. (shrink)

Adults without the capacity to make their own medical decisions have their rights protected under the Mental Capacity Act in the UK. The underlying principle of the court's decisions is the best interests test, and the evaluation of best interests is a welfare appraisal. Although the House of Lords in the well-known case of Bland held that the decision to withhold treatment for patients in a persistent vegetative state should not be based on their best interests, judges (...) in recent cases have still held that the best interests of persistently vegetative patients demand that the right to die with dignity prevails over society's interest to preserve life. The basis of suggesting that it is in the best interests for one who is alive in peace to die in peace is weak. Even if it may not be in their best interests to live on, it may not be so to die either. The phrase ‘the right to dignity/to die with dignity’ has been misused as a trump card to justify the speculation that a vegetative patient would necessarily refuse to live on machines. Without disrespect to the court's decision, we argue that the use of the best interests test to authorise withdrawing/withholding treatment from persistently vegetative patients without an advance directive is problematic. We propose that the court could have reached the same decision by considering only the futility of treatment without working through the controversial best interests of the patient. (shrink)

The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide (...) a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them. (shrink)

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

This paper argues that Charlie Gard’s parents should have been the decision-makers about their son’s best interests and that determination of Charlie’s best interests depended on a moral decision about which horn of a profound moral dilemma to choose. Charlie’s parents chose one horn of that moral dilemma and the courts, like Charlie Gard’s doctors, chose the other horn. Contrary to the first UK court’s assertion, supported by all the higher courts that considered it, that its judgement was (...) ‘objective’, this paper argues that the judgement was not and could not be ‘objective’ in the sense of objectively correct but was instead a value judgement based on the judge’s choice of one horn of the moral dilemma. While that horn was morally justified so too was the horn chosen by the parents. The court could and should have avoided depriving the parents of their normal moral and legal right and responsibility to decide on their child’s best interests. Instead, this paper argues that the court should have acknowledged the lawfulness of both horns of the moral dilemma and added to its judgement that Charlie Gard’s doctors were not legally obliged to provide treatment that they believed to be against their patient’s best interests the additional judgement that Charlie’s parents could lawfully transfer his care to other doctors prepared to offer the infant a trial of the experimental treatment requested by his parents. (shrink)

It has recently been suggested that doctors have a duty to act in their patient's best interest and that this duty demands that life-sustaining treatment—including food and fluids—should sometimes be withheld or withdrawn and the patient allowed to die. In this article, the author explores the scope of the ‘best interests principle’ in the context of treatment decisions for seriously handicapped newborn infants. She argues that those who hold that it is permissible to starve or dehydrate an (...) infant to death are mistaken to think that this course of action is in the infant's best interests. While it may be true that there are times whendeath is, everything considered, in an infant's best interests, a slow and distressingmethod of bringing death about is not. Since death by dehydration and starvation is not benign, the withholding of food and fluids is generally not in an infant's best interests. The author concludes by suggesting thatwhenever the withdrawal or non-employment of life-sustaining means imposes a heavy burden on the infant, the ‘best interests principle’ would demand that the infant be killed rather than allowed to die. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ought We to Require Emotional Capacity as Part of Decisional Competence?Paul S. Appelbaum* (bio)AbstractThe preceding commentary by Louis Charland suggests that traditional cognitive views of decision-making competence err in not taking into account patients’ emotional capacities. Examined closely, however, Charland’s argument fails to escape the cognitive bias that he condemns. However, there may be stronger arguments for broadening the focus of competence assessment to include emotional capacities, centering on (...) the ways in which emotions aid humans in processing information. Before emotional capacities are added to the list of functions essential for decisional competence, though, the feasibility and utility of such a reorientation must be demonstrated.To what extent ought persons’ capacities to experience emotion be taken into account when determining whether they should be deemed competent to make their own decisions? In the previous article, Louis Charland (1998) argues that traditional models of decision-making competence—of which the MacArthur Competence Treatment Study is a typical example—are mistaken in focusing narrowly on persons’ cognitive abilities to the neglect of emotional factors. In contrast, he suggests, constructs of competence ought explicitly to require a capacity to experience emotions, which he believes is central to meaningful decision making, before deeming persons competent.Charland, as he acknowledges, is not the first to suggest that the presence of some degree of emotional capacity is a necessary element of competence, but his argument is among the most elaborate to date and is certainly worth closer examination. Looked at carefully, however, Charland’s argument does not make quite the case for the determination of emotional capacity in competence assessment that he claims for it. Indeed, as I demonstrate below, Charland may share the same “pernicious [End Page 377] cognitive bias” that he ascribes to more traditional approaches. However, despite what I identify as the problems in Charland’s argument, others have raised more disturbing questions about the lack of attention to emotional issues in competence assessment. Thus, I am not ready to reject entirely the possibility that determinations of decisional competence ought to consider emotional factors. I conclude by outlining the questions that remain to be answered to identify more clearly the potential benefits of such an approach.The Construct of Decision-Making CompetenceSome preliminary comments about the nature of the dominant construct of decision-making competence may provide a useful frame for my response to Charland’s paper. Contemporary ideas of competence are tied inextricably to the ideal of self-determination in modern Western societies. Such societies are committed to respect for individual choice, both as a good in its own right and on the grounds that each person knows best what choices will maximize his or her own welfare. In general, therefore, states will not intervene to prevent persons from acting on their decisions, even when the choices they make—like the decision to smoke or to refuse potentially life-saving medical care—may objectively be thought to be detrimental to them.In some cases, however, the presumption that people will act in their own interests, as well as the notion that there is something intrinsically valuable in respecting their choices, fails (Buchanan and Brock 1989). When people’s minds are so disordered that they cannot be said to be making meaningful choices, other values come into play. Such people are called “incompetent.” When persons reach that point, the state’s interest in protecting its citizens becomes primary and someone else must make decisions on their behalf. Note that the size of this group must be sharply limited, lest a liberal society’s commitment to self-determination be undermined: There is no more profound infringement of the rights of citizens than the determination that they are incompetent. Thus, the criteria for incompetence must be selected in a deliberately narrow fashion—alternately, one might say that the standards for competence are made intentionally broad—so that all but a tiny percentage of citizens will be permitted to make decisions on their own.In the Anglo-American world, the process of formulating criteria of competence by and large has been left to the common law courts. Over the course of centuries they have identified the capacities that are, in... (shrink)

In this paper, I present an ethical analysis of the case of an elderly woman with dementia, Mrs S. The hospital treating Mrs S sought to cease her dialysis treatment despite Mrs S’s family’s protestations that continuing the treatment was in her best interests. Assuming Brock’s framework as a theoretical background, I consider the case in terms of three questions. Firstly, was ‘best interests ’ the appropriate basis for deciding on a course of action in this situation? Secondly, (...) assuming the appropriateness of a best interests principle, was it in Mrs S’s best interests for the dialysis treatment to be withdrawn as the hospital suggested? And thirdly, if it was in Mrs S’s best interests for dialysis to be withdrawn, was the hospital right to pursue this course of action in light of the family’s disagreement? Based on the changes to the patient’s ‘self ’ associated with dementia, I argue that a best interests principle was appropriate, that continuing dialysis was not in Mrs S’s best interests, and that the hospital should have pursued cessation of treatment even in light of the family’s contrary wishes. (shrink)

Johnson and Stricker published an opinion piece in the Journal of Medical Ethics presenting their perspective on the 2008 agreement between the Infectious Diseases Society of America (IDSA) and the Connecticut Attorney General with regard to the 2006 IDSA treatment guideline for Lyme disease. Their writings indicate that these authors hold unconventional views of a relatively common tick-transmitted bacterial infection caused by the spirochete Borrelia burgdorferi. Therefore, it should come as no surprise that their opinions would clash with the IDSA's (...) evidence-based guidelines for the diagnosis and treatment of Lyme disease. Their allegations of conflict of interest against the IDSA resemble those made against the National Institutes of Health, the Food and Drug Administration and the Centers for Disease Control and Prevention in 2000, which were found to be baseless. It is the responsibility of all physicians and medical scientists to stand up to antiscientific, baseless and unethical attacks on those who support an evidence-based approach to caring for patients. (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)

This past July, five professional societies, whose members together provide the majority of clinical care in the United States, published a statement objecting to “inappropriate legislative interference” with the physician‐patient relationship and reiterated the importance of “putting patients’ best interests first.” Such a collective response is helpful, but given the apparently growing interest among legislators in legislating aspects of physician‐patient communications, individual physicians, too, may have to face this problem. What should a physician do when confronted with a (...) law that attempts to intervene in the doctor‐patient relationship in a way that the physician believes undercuts good medical care? (shrink)

Thirty years ago, Buchanan and Brock distinguished between guidance principles and interference principles in the setting of surrogate decision making on behalf of children and incompetent adult patients. They suggested that the best interest standard could serve as a guidance principle, but was insufficient as an interference principle. In this issue of The Journal of Clinical Ethics, Ross argues that the best interest standard can serve as neither a guidance nor interference principle for decision making on (...) behalf of children, but that her model of constrained parental autonomy can serve as both. I will argue that Buchanan and Brock were correct that a single model or standard cannot serve as both a guidance and interference principle in pediatrics and that the best interest standard is a sufficient guidance principle. The harm principle fulfills the conditions necessary for an interference principle, at least insofar as deciding when state intervention to interfere with parental decision making is justified. (shrink)

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness (...) and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders. (shrink)

Patients have received experimental pharmaceuticals outside of clinical trials for decades. There are no industry-wide best practices, and many companies that have granted compassionate use, or ‘preapproval’, access to their investigational products have done so without fanfare and without divulging the process or grounds on which decisions were made. The number of compassionate use requests has increased over time. Driving the demand are new treatments for serious unmet medical needs; patient advocacy groups pressing for access to emerging treatments; internet (...) platforms enabling broad awareness of compelling cases or novel drugs and a lack of trust among some that the pharmaceutical industry and/or the FDA have patients’ best interests in mind. High-profile cases in the media have highlighted the gap between patient expectations for compassionate use and company utilisation of fair processes to adjudicate requests. With many pharmaceutical manufacturers, patient groups, healthcare providers and policy analysts unhappy with the inequities of the status quo, fairer and more ethical management of compassionate use requests was needed. This paper reports on a novel collaboration between a pharmaceutical company and an academic medical ethics department that led to the formation of the Compassionate Use Advisory Committee. Comprising medical experts, bioethicists and patient representatives, CompAC established an ethical framework for the allocation of a scarce investigational oncology agent to single patients requesting non-trial access. This is the first account of how the committee was formed and how it built an ethical framework and put it into practice. (shrink)