Medicine is incorporating genetic services into all avenues of health‐care, ranging from the rarest to the most common diseases. Cognitive theories of decision‐making still dominate professionals’ understanding of patient decision‐making about how to use genetic information and whether to have testing. I discovered a conceptual model of decision‐making while carrying out a phenomenological‐hermeneutic descriptive study of a convenience sample of 12 couples who were interviewed while deciding whether to undergo prenatal genetic testing.Thirty‐two interviews (...) were conducted with 12 men and 12 women separately. Interviews were transcribed verbatim and all data were analyzed using three levels of coding that were sorted into 30 categories and then abstracted into three emergent meta‐themes that described men's and women's attempts to make sense and find meaning in how to best use prenatal genetic technology. Their descriptions of how they thought about, communicated, and coped with their decision were so detailed it was possible to discern nine different types of thinking they engaged in while deciding to accept or decline testing.They believed that decision‐making is a process of working through your own personal style of thinking. This might include only one or any combination of the following types of thinking: analytical, ethical, moral, reflective, practical, hypothetical, judgmental, scary, and second sight, as described in detail by these 12 couples. (shrink)

Background Non-invasive prenatal testing (NIPT), which can screen for aneuploidies such as trisomy 21, is being implemented in several public healthcare systems across Europe. Comprehensive communication and information have been highlighted in the literature as important elements in supporting women’s reproductive decision-making and addressing relevant ethical concerns such as routinisation. Countries such as England and France are adopting broadly similar implementation models, offering NIPT for pregnancies with high aneuploidy probability. However, we do not have a deeper understanding of (...) how professionals’ counselling values and practices may differ between these contexts. Methods In this paper, we explore how professionals in England and France support patient decision-making in the provision of NIPT and critically compare professional practices and values. We draw on data from semi-structured interviews with healthcare professionals. Results Both English and French professionals emphasised values relating to patient choice and consent. However, understandings and application of these values into the practice of NIPT provision differed. English interviewees placed a stronger emphasis on interpreting and describing the process of counselling patients and clinical care through a “principle” lens. Their focus was on non-directiveness, standardisation, and the healthcare professional as “decision-facilitator” for patients. French interviewees described their approach through a “procedural” lens. Their focus was on formal consent, information, and the healthcare professional as “information-giver”. Both English and French professionals indicated that insufficient resources were a key barrier in effectively translating their values into practice. Conclusion Our findings illustrate that supporting patient choice in the provision of NIPT may be held as an important value in common on a surface level, but can be understood and translated into practice in different ways. Our findings can guide further research and beneficially inform practice and policy around NIPT provision. (shrink)

A review of medical ethics literature relating to the importance of the participation of patients in decision-making introduces the role of rights-based mediation as a voluntary process now being developed innovatively in America. This is discussed in relation to the theory of communicative ethics and moral personhood. References are then made to the work of medical ethics committees and the role of mediation within these. Finally it is suggested that mediation is part of an eirenic ethic already being (...) used informally in good patient care, and that there is a case for developing it further. (shrink)

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)

Despite its virtues, lay decision-making in medicine shares with professional decision-making a disturbing common feature, reflected both in formal policies prohibiting high-risk research and in informal policies favoring treatment decisions made when a crisis or change of status occurs, often late in a downhill course. By discouraging patient decision-making but requiring dedication to the patient's interests by those who make decisions on the patient's behalf, such practices tend to preclude altruistic choice (...) on the part of the patient. This eclipse is to be regretted not just because widescale altruism has the capacity to provide important social goods and correct injustices in distribution, but for intrinsic reasons as well. It is argued that preserving the possibility of altruism obliges patients – and future patients – to make decisions about dying and other medical matters in advance, thus avoiding that displacement of decision-making onto lay and professional second parties which results in altruism's eclipse. Keywords: altruism, medical decision-making, patient's interest, self-interest, autonomy, death and dying decisions, refusal of treatment, prolongation of life, allowing to die, high-risk research CiteULike Connotea Del.icio.us What's this? (shrink)

In order to protect patients against medical paternalism, patients have been granted the right to respect of their autonomy. This right is operationalized first and foremost through the phenomenon of informed consent. If the patient withholds consent, medical treatment, including life-saving treatment, may not be provided. However, there is one proviso: The patient must be competent to realize his autonomy and reach a decision about his own care that reflects that autonomy. Since one of the most important (...) patient rights hinges on the patient's competence, it is crucially important that patient decision making incompetence is clearly defined and can be diagnosed with the greatest possible degree of sensitivity and, even more important, specificity. Unfortunately, the reality is quite different. There is little consensus in the scientific literature and even less among clinicians and in the law as to what competence exactly means, let alone how it can be diagnosed reliably. And yet, patients are deemed incompetent on a daily basis, losing the right to respect of their autonomy. In this article, we set out to fill that hiatus by beginning at the very beginning, the literal meaning of the term competence. We suggest a generic definition of competence and derive four necessary conditions of competence. We then transpose this definition to the health care context and discuss patient decision making competence. (shrink)

Patient autonomy, as exercised in the informed consent process, is a central concern in bioethics. The typical bioethicist's analysis of autonomy centers on decisional capacity—finding the line between autonomy and its absence. This approach leaves unexplored the structure of reasoning behind patient treatment decisions. To counter that approach, we present a microeconomic theory of patient decision-making regarding the acceptable level of medical treatment from the patient's perspective. We show that a rational patient's desired (...) treatment level typically departs from the level yielding an absence of symptoms, the level we call ideal. This microeconomic theory demonstrates why patients have good reason not to pursue treatment to the point of absence of physical symptoms. We defend our view against possible objections that it is unrealistic and that it fails to adequately consider harm a patient may suffer by curtailing treatment. Our analysis is fruitful in various ways. It shows why decisions often considered unreasonable might be fully reasonable. It offers a theoretical account of how physician misinformation may adversely affect a patient's decision. It shows how billing costs influence patient decision-making. It indicates that health care professionals' beliefs about the ‘unreasonable’ attitudes of patients might often be wrong. It provides a better understanding of patient rationality that should help to ensure fuller information as well as increased respect for patient decision-making. (shrink)

ObjectiveIn Belgium, people with an incurable psychiatric disorder can file a request for euthanasia claiming unbearable psychic suffering. For the request to be accepted, it has to meet stringent legal criteria. One of the requirements is that the patient possesses decision-making capacity. The patient’s decision-making capacity is assessed by physicians.The objective of our study is to provide insight in the assessment of decision-making capacity in the context of euthanasia for patients with psychic (...) suffering caused by a psychiatric disorder.MethodTwenty-two semistructured interviews with psychiatrists and neurologists were analysed with NVivo, a qualitative analysis software to code and organise transcribed data.ResultsDifferent views and approaches regarding decision-making capacity in the context of euthanasia emerged from the data.Most of the physicians have some knowledge of the cognitive ability approach on decision-making capacity. According to this approach, four abilities constitute decision-making capacity: communication, understanding, appreciation and reasoning. We observed differences in the way these abilities are valued in relation to competence. Some physicians take additional elements into consideration when assessing decision-making capacity.Physicians acquired their knowledge on the subject in many different ways. Most of the physicians reported that decision-making capacity was not part of their training.ConclusionWe conclude that physicians assess decision-making capacity in different ways and that personal values and beliefs influence their approach. As such, a common approach in assessing the decision-making capacity of a patient among the interviewed physicians is lacking. Less arbitrariness could be obtained by consistently implementing the cognitive ability approach. (shrink)

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of (...) shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential (...) features. In the article, different versions of SDM are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship. (shrink)

The principle of autonomy presupposes Patient Decision Making Competence (PDMC). For a few decades a considerable amount of empirical research has been done into PDMC. In this contribution that research is explored. After a short exposition on four qualities involved in PDMC, different approaches to assess PDMC are distinguished, namely a negative and a positive one. In the negative approach the focus is on identifying psychopathologic conditions that impair sound decision making; the positive one attempts (...) to assess whether a patient actually has the required abilities and qualities. Characteristic of the latter approach is the use of (or development of) test-like instruments for PDMC assessment. Some of these tests are discussed and commented on. Although they may be useful in investigating aspects of PDMC, none of the described approaches and tests offers a reliable and valid method for PDMC assessment. In response to a potential misuse of tests, the concept of a supportive situation is briefly introduced in order to draw attention to the risk of prematurely deeming patients incompetent on the basis of low test scores, whereas their insufficient performance may be (partly) attributable to alack of situational support. Also, the need for and possibility of an emotionalist concept of PDMC are suggested, as an alternative to the more common rationalist one. In this regard,the legitimacy of competence being conceived as a presumption or fiction of law, deserves further investigation. (shrink)

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

Incapacitated and surrogateless patients are an ever-growing trend in the world of health care. Although the extent of the issue is unknown, 1 out 20 deaths in the intensive care unit (ICU) occurre...

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

Although prisons provide on-site primary care, the corrections system relies on external hospitals to provide a variety of healthcare services. Compared to the general population, incarcerated patients experience higher rates of chronic medical conditions, mental illness, substance abuse, cancer, traumatic brain injury, assault, and communicable disease. Certain specialties of clinicians are likely to encounter patients who are incarcerated, which makes it important for clinicians to understand how medical decision-making may differ when the patient is a prisoner. The (...) corrections system retains custody of inmates and is responsible for their welfare, including facilitating necessary medical care. However, this does not permit corrections personnel or a warden to automatically assume the role of the patient's medical decision-maker. Except for narrow exceptions, prisoners do not lose their rights to medical decision-making. In some instances, corrections staff or the prison warden have improperly asserted authority to act as the patient's medical decision-maker, such as when the patient lacks decision-making capacity. This violates ethical principles of bodily integrity, respect, and fairness. This paper provides an overview of medical decision-making for incarcerated patients, how surrogate decision-maker hierarchies apply to incarcerated patients without decision-making capacity, and special considerations for this subset of patients. (shrink)

Aim: Patients with advanced cancer need information about end-of-life treatment options in order to make informed decisions. Clinicians vary in the frequency with which they initiate these discussions.Patients and methods: As part of a long-term longitudinal study, patients with an expected 2-year survival of less than 50% who had advanced gastrointestinal or lung cancer or amyotrophic lateral sclerosis were interviewed. Each patient’s medical record was reviewed at enrollment and at 3 months for evidence of the discussion of patient (...) wishes concerning ventilator support, artificial nutrition and hydration , resuscitation and hospice care. A Kaplan–Meier analysis was also performed and 2-year survival calculated.Results: 60 cancer and 32 ALS patients were enrolled. ALS patients were more likely than cancer patients to have evidence of discussion about their wishes for ventilator support , ANH , DNR and hospice care . At 6 months, 91% of ALS patients were alive compared with 62% of cancer patients; at 2 years, 63% of ALS patients were alive compared with 23% of cancer patients .Conclusions: Cancer patients were less likely than ALS patients to have had documented advanced care planning discussions despite worse survival. This may reflect perceptions that ALS has a more predictable course, that advanced cancer has a greater number of treatment options, or differing views about hope. Nevertheless, cancer patients may be less adequately prepared for end-of-life decision-making. (shrink)

The aim of this study was to investigate factors associated with seriously ill patients’ preferences for their family and physicians making resuscitation decisions on their behalf. Using SUPPORT II data, the study revealed that, among 362 seriously ill patients who were experiencing pain, 277 (77%) answered that they would want their family and physicians to make resuscitation decisions for them instead of their own wishes being followed if they were to lose decision-making capacity. Even after controlling for (...) other variables, patients who preferred the option of undergoing cardiopulmonary resuscitation (CPR) in the future were twice as likely, and those who had had ventilator treatment were four-fifths less likely, to rely on their family and physicians than those who did not want CPR (odds ratio (OR)-2.28; 95% confidence interval (CI) 1.18-4.38) or those who had not received ventilator treatment (OR-0.23; 95% CI 0.06-0.90). Psychological variables (anxiety, quality of life, and depression), symptomatic variables (severity of pain and activities of daily living) and the existence of surrogates were not significantly associated with patients’ preferences for having their family and physicians make resuscitation decisions for them. Age was not a significant factor for predicting the decision-making role after controlling for other variables. (shrink)

The terms “competency” and “decision making capacity” are often used interchangeably in the medical setting. Although competency is a legal determination made by judges, “competency” assessments are frequently requested of psychiatrists who are called to consult on hospitalised patients who refuse medical treatment. In these situations, the bioethicist is called to consult frequently as well, sometimes as a second opinion or “tie breaker”. The psychiatric determination of competence, while a clinical phenomenon, is based primarily in legalism and can (...) be quite different from the bioethics approach. This discrepancy highlights the difficulties that arise when a patient is found to be “competent” by psychiatry but lacking in DMC by bioethics. Using a case, this dilemma is explored and guidance for reconciling the opinions of two distinct clinical specialties is offered. (shrink)

The Patient Self Determination Act of 1991 brought much needed attention to the importance of advance care planning and surrogate decision-making. The purpose of this law is to ensure that a patient’s preferences for medical care are recognized and promoted, even if the patient loses decision-making capacity. In general, patients are presumed to have DMC. A patient’s DMC may come under question when distortions in thinking and understanding due to illness, delirium, depression (...) or other psychiatric symptoms are identified or suspected. Physicians and other healthcare professionals working in hospital settings where medical illness is frequently comorbid with depression, adjustment disorders, demoralization and suicidal ideation, can expect to encounter ethical tension when medically sick patients who are also depressed or suicidal request do not resuscitate orders. (shrink)

Background This study was designed to investigate how patient-reported shared decision-making relates to other aspects of patient centredness and satisfaction. Methods Questionnaire study with patients. Consecutive patients in primary care responding post visit. Associations are presented as proportions, positive predictive values, with 95% confidence intervals. Results 223 patient questionnaires were included. 62% : 55–69) of the patients indicated the highest possible rating of being involved in the decisions about their ongoing care. Self-reported SDM had a (...) positive predictive value of between 85% and 95% for five other patient-centred aspects and satisfaction. Conclusion The results suggest that shared decision making is the patient-centred aspect hardest to achieve and that a patient-centred process leading up to the decision-making increases the chance of the patient being involved in the decision-making. (shrink)

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests (...) that patients make an informed, autonomous decision to be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters. (shrink)

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high-risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision-making capacity. (...) In this essay, we discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision-making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient. (shrink)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, (...) Heidegger, and Merleau-Ponty in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

There are marked differences between countries with regard to reimbursement decision-making, yet few studies have tried to understand this process and its consequences by a detailed analysis of the local context and decision-making structure. This article describes reimbursement decision-making and subsequent prescribing patterns of new pharmaceuticals by means of a case study on glitazones in treatment of type 2 diabetes mellitus patients in Denmark. The study shows that institutional arrangements, providing the context in which (...) evidence is used, are highly important for understanding the reimbursement decision-making process. In particular the Danish Medicines Agency (DMA) has shaped the decision to reimburse glitazones on the basis of physician-mediated requests of individual patients. Relatively few patients have been prescribed glitazones since their introduction in 2000, suggesting that individual reimbursement may be an effective instrument in controlling overall expenditure of selected pharmaceuticals, although in the case of glitazones this has likely been achieved at the expense of equality in access to the products. The discussion focuses on the generalizability of the findings to both other pharmaceuticals in the individual reimbursement scheme in Denmark, and to other countries that are trying to balance the need to control overall pharmaceutical care expenditure with the need to secure equality in access to new drugs with therapeutic added value. (shrink)

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

In recent years the formerly quite strong interest in patient compliance has been questioned for being too paternalistic and oriented towards overly narrow biomedical goals as the basis for treatment recommendations. In line with this there has been a shift towards using the notion of adherence to signal an increased weight for patients’ preferences and autonomy in decision making around treatments. This ‘adherence-paradigm’ thus encompasses shared decision-making as an ideal and patient perspective and autonomy (...) as guiding goals of care. What this implies in terms of the importance that we have reason to attach to (non-)adherence and how has, however, not been explained. In this article, we explore the relationship between different forms of shared decision-making, patient autonomy and adherence. Distinguishing between dynamically and statically framed adherence we show how the version of shared decision-making advocated will have consequences for whether one should be interested in a dynamically or statically framed adherence and in what way patient adherence should be assessed. In contrast to the former compliance paradigm (where non-compliance was necessarily seen as a problem), using observations about (non-)adherence to assess the success of health care decision making and professional-patient interaction turns out to be a much less straightforward matter. (shrink)

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. (...) From the perspective of patients, there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Ideal of Shared Decision Making Between Physicians and PatientsDan W. Brock (bio)IntroductionShared treatment decision making, with its division of labor between physician and patient, is a common ideal in medical ethics for the physician-patient relationship.1 Most simply put, the physician's role is to use his or her training, knowledge, and experience to provide the patient with facts about the diagnosis and (...) about the prognoses without treatment and with alternative treatments. The patient's role in this division of labor is to provide the values—his or her own conception of the good—with which to evaluate these alternatives, and to select the one that is best for himself or herself. As a rough guide to practice, this is a reasonable conception; most of the time it is likely to produce sound treatment decisions. However, as an ideal it is too simplistic, and is subject to several challenges that I will explore in this paper.Some challenges relate to the physician's role. This facts/values division of labor seems to assume that the physician can and should provide the facts about treatment alternatives in a value-neutral form. But some have questioned whether the sciences on which medicine is based are, or can be, value free. Moreover, the concepts of health and disease, and of the normal and pathological, are held by many to be value laden. And even if it is possible for physicians to provide only value-neutral facts to the patient, should the physicians' role be restricted in this way?Other challenges that I will present in the paper are to the patient's role [End Page 28] as provider of the values for the evaluation of the different treatment alternatives. One defense of this role is based on the claim that physicians are not in a position to know reliably what is in a patient's best interests (Buchanan, forthcoming). I believe at least as influential—even if often not explicitly stated—is an extreme subjectivism about values that assumes that the patient's own ultimate values, which define his or her own conception of the good, are incorrigible. By incorrigible, I mean they cannot be mistaken. In the standard case in which treatment is pursued for the patient's benefit, this extreme subjectivism is thought to support the patient's values guiding treatment decision making and treatment. I will explore this incorrigibility claim and will argue that on each of the main philosophical conceptions of the good for persons it is indefensible and should not be the basis for shared treatment decision making.Underlying this view of the physician-patient division of labor are assumptions and beliefs about the nature and relation of facts and values, and science and ethics, that are largely the legacy of a logical positivism that has long since been rejected by most philosophers. It is time that these unstable foundations for our normative ideal of the physician-patient relation were finally removed and replaced with more defensible underpinnings.Two Models of the Physician-Patient RelationshipPositivists insisted on a relatively sharp distinction between descriptive or empirical claims and science, on the one hand, and evaluative claims and ethics, on the other.2 Descriptive statements and the claims of science were to be true or false according to whether they in fact correctly described and explained the world. By remaining properly descriptive or empirical, science could, at least in principle, be entirely value neutral or value free.In its more extreme versions, positivism held that ethical judgments lacked cognitive content, but were instead expressions of emotions or attitudes, and as such could be neither true nor false, correct or mistaken. Because no evaluative statements were held to be logically entailed by any descriptive or empirical statements, moral reasoning was thought to be properly understood not as reasoning but as attempts at nonrational persuasion.3 Many drew from this an extreme subjectivism in ethics along the lines of what I have called above the incorrigibility thesis—there is no meaningful sense in which an individual's ultimate values defining his or her own conception of the good life could be mistaken, false, or unfounded.These... (shrink)

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

When patients cannot make their own treatment decisions, surrogates typically step in to do it for them. Surrogate decision‐making is far from ideal, of course, as the surrogate may not know what the patient prefers or what best promotes her interests. One way to improve it would be to arm surrogates with information about what patients in similar circumstances tend to prefer, allowing them to make empirically grounded predictions about what their patient would want.

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)

In recent years, shared decision-making has become entrenched in the medical literature and the law as the ideal method for involving patients in decisions related to their health care. Shared decision-making represents a compromise between the opposed extremes of paternalistic interactions that limit patients’ control of their health care, and “informed choice” interactions that require physicians to provide technical expertise only, leaving patients to make all treatment decisions on their own. An implicit goal of shared (...) class='Hi'>decision-making is to improve medical care by promoting joint participation of patients and physicians in clinical consultations. The model of shared decision-making may, however, inadequately address the health care needs of lower literate patients, a significant portion of the general population.As shared decision-making is widely held as a clinical ideal, we highlight the difficulties that physicians might have in implementing shared decision-making with lower literate patients. (shrink)

In recent years, shared decision-making has become entrenched in the medical literature and the law as the ideal method for involving patients in decisions related to their health care. Shared decision-making represents a compromise between the opposed extremes of paternalistic interactions that limit patients’ control of their health care, and “informed choice” interactions that require physicians to provide technical expertise only, leaving patients to make all treatment decisions on their own. An implicit goal of shared (...) class='Hi'>decision-making is to improve medical care by promoting joint participation of patients and physicians in clinical consultations. The model of shared decision-making may, however, inadequately address the health care needs of lower literate patients, a significant portion of the general population.As shared decision-making is widely held as a clinical ideal, we highlight the difficulties that physicians might have in implementing shared decision-making with lower literate patients. (shrink)

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

The practice of respecting patients’ autonomy is rooted in the healthcare professionals’ empathy for patients’ situations, without which appropriate supports to the patients during the informed consent process may be remarkably moderated. The purpose of this study was to explore elective surgery patients’ experiences during their decision-making process. This research was conducted using a phenomenological approach, and the data analysis was guided by Colaizzi’s method. A total of 17 participants were recruited from a hospital in southern Taiwan. Two (...) major themes emerged from the analyses: (a) a voluntary yet necessary alternative—to undergo a surgery and (b) alternatives compelled by the unalterable decision—the surgery. It was concluded that unless healthcare professionals can empathize with the distressed situation of their patients who are facing elective surgery, the practice of informed consent may become merely a routine. Nurses can be the best advocates for patients and facilitators to enhance communication between patients and healthcare personnel. (shrink)

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

According to many of its proponents, shared decision making ("SDM") is the right way to interpret the clinician-patient relationship because it respects patient autonomy in decision-making contexts. In particular, medical ethicists have claimed that SDM respects a patient's relational autonomy understood as a capacity that depends upon, and can only be sustained by, interpersonal relationships as well as broader health care and social conditions. This paper challenges that claim. By considering two primary approaches (...) to relational autonomy, this paper argues that standard accounts of SDM actually undermine patient autonomy. It also provides an overview of the obligations generated by the principle of respect for relational autonomy that have not been captured in standard accounts of SDM and which are necessary to ensure consistency between clinical practice and respect for patient autonomy. (shrink)