Recent articles in biomedical ethics have begun to explore both the relevance of family interests in treatment decisions and the resultant ramifications for physicians' obligations to patients. This article addresses two important questions regarding physicians' obligations vis-a-vis family interests: (1) What should a physician do when the exercise of patient autonomy threatens to negate the patient's moral obligations to other family members? (2) Does respect for patient autonomy typically require efforts on the part of physicians to keep (...) patients' treatment decisions from being influenced by family considerations? A series of clarifications about the concept of autonomy is also presented. (shrink)

The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.

Is it ethical to pay patients for selecting cheaper medical treatments? The healthcare system in the United States is notoriously profligate, at least in part because when insurers foot the bill, patients have little incentive to avoid wasteful treatments. One familiar means for dealing with this problem is for insurers to offer reduced co-pays to patients who select cheaper treatments. Would it be ethical to take this one step further, beyond the zero bound, sharing the savings of cheaper treatments by (...) positively paying the patients who select them? Schmidt & Emanuel recently proposed this policy of ‘Inclusive Shared Savings’. This article examines various ethical objections to the idea. (shrink)

Recently, commentators close to and within the UK government have claimed that patient choice can increase equity in the context of the National Health Service. This article critically examines the basis for this claim through analysis of recent speeches and publications authored by secretaries of state for health and their policy advisers. It is concluded that this claim has not developed prospectively from an analysis of the causes of healthcare inequity, or even with a consistent normative definition of (...) equity. The limited justification that is “framed in causal explanations” of inequity has suffered from an apparent disregard of the available evidence. (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)

Recent media reports have drawn widespread attention to the experiences of patients who are denied reproductive services at Catholic hospitals. For some patients, such as those experiencing miscarriage, denial of appropriate treatment can lead to serious health consequences. However, many patients are unaware of the limitations on services available at religiously affiliated health care institutions. As a result, patients’ ability to make informed and autonomous decisions about where to seek treatment is hindered. There are currently no federal or state laws (...) requiring health care institutions to inform patients directly of the full scope of medical services they are unable to provide on the basis of religion or conscience. Given religious hospitals’ significant role in the provision of health care in the United States, it is essential that patients be clearly informed about institutional limitations on care. This goal would be best served by adopting a federal disclosure law similar to the Patient Self-Determination Act. (shrink)

ABSTRACT In recent years, the medical establishment has been speaking in favor of women's autonomy in childbirth by advocating cesarean delivery on maternal request (CDMR). This paper offers to look at the ethical dimension of CDMR through a feminist critique of the medicalization of childbirth and its influence on present‐day medical ethics. I claim that the medicalization of childbirth reflects a sexist bias with regard to conceptions of the body and needs to be used with caution when applied to women's (...) reproductive health. I then use this perspective to critically analyze the position of the American College of Obstetricians and Gynecologists (ACOG) on the ethics of decision‐making in patient‐choice surgery. I claim that informed consent cannot be meaningfully exercised unless women are made aware of the sexist underpinnings of the medical model of childbirth and its influence on the ethical reasoning of the American College of Obstetricians and Gynecologists. I also express concern about the effects of normalizing patient‐choice cesarean sections on the choices available to pregnant women using as examples the institutional rules on mandatory cesarean sections for women with a previous cesarean delivery or breech presentation. I conclude with a call for more research into the real cost of convenience in CDMR, particularly as our increasingly strained publicly funded healthcare system would greatly benefit from the de‐medicalization of normal body functions rather than an increased dependence on costly surgical technology. (shrink)

Developing ethical standards for clinical use of large-scale genome and exome sequencing has proven challenging, in part due to the inevitability of incidental or secondary findings. Policy of the American College of Medical Genetics and Genomics has evolved but remains problematic. In 2013, ACMG issued policy recommending mandatory analysis of 56 extra genes whenever sequencing was ordered for any indication, in order to ascertain positive findings in pathogenic and actionable genes. Widespread objection yielded a 2014 amendment allowing patients to opt-out (...) from analysis of the extra genes. In 2015, ACMG published the amended policy, providing that patients could opt out of the full set of extra genes, but not a subset. In 2016, ACMG enlarged the set and indicated planned expansion of the roster of extra genes to include pharmacogenetic findings. ACMG policy does not protect the respect for patient choice that prevails in other domains of clinical medicine, where informed consent allows patients to opt in to desired testing. By creating an expanding domain of genomic testing that will be routinely conducted unless patients reject the entire set of extra tests, ACMG creates an exceptional domain clinical practice that is not supported by ethics or science. (shrink)

In current American medical practice, autonomy is assumed to be more valuable than human life: if a patient autonomously refuses lifesaving treatment, the doctors are supposed to let him die. In this paper we discuss two values that might be at stake in such clinical contexts. Usually, we hear only of autonomy and best interests. However, here, autonomy is ambiguous between two concepts—concepts that are tied to different values and to different philosophical traditions. In some cases, the two values (...) (that of agency and that of authenticity) entail different outcomes. We argue that the comparative value of these values needs to be assessed. (shrink)

Patients are generally assumed to have the right to choices about treatment, including the right to refuse treatment, which is constrained by considerations of cost‐effectiveness. Independently, many people support the idea that patients who are responsible for their ill health should incur penalties that non‐responsible patients do not face. Surprisingly, these two areas have not received much joint attention. This paper considers whether restricting the scope of responsibility to pre‐treatment decisions can be justified, or whether a demand to hold people (...) responsible for 'usual suspect' choices such as smoking or failure to exercise commits us to also holding people responsible for their treatment choices. I argue that there is no good reason to support this restriction: those who advocate responsibility for (some) pre‐treatment choices should also advocate responsibility for (some) treatment choices. However, I also note that, as with pre‐treatment choices, patients may sometimes have reason to choose in ways that do not optimize their health. As such, I also consider a process, based on the idea of public reasons, for deciding which treatment choices patients cannot legitimately be held responsible for, along with a method for considering proposed changes to this category. (shrink)

Medical practice should evolve alongside medical ethics. As our understanding of the ethical implications of physician-patient interactions becomes more nuanced, physicians should integrate those lessons into practice. As early as the 1930s, epidemiological studies began to identify that the rates of medical procedures varied significantly along geographic and socioeconomic lines. Dr. J. Alison Glover recognized that tonsillectomy rates in school children in certain school districts in England and Wales were in some cases eight times the rates of children in (...) other districts, with the only significant predictive factors being the current chief medical officer in the area and the socioeconomic well-being of the child's parents. Unfortunately, Dr. Glover's work revealed that the increase in tonsillectomies did not improve the health of adolescent patients and appeared to be performed “as a routine prophylactic ritual for no particular reason and with no particular result.”. (shrink)

Clinical evidence suggests that many patients undergo surgery that they would decline if fully informed. Failure to communicate the relevant risks, benefits, and alternatives of a procedure violates medical ethics and wastes medical resources. Integrating shared decision-making, a method of communication between provider and patient, into medical decisions can satisfy physicians' ethical obligations and reduce unwanted procedures. This article proposes a three-step process for implementing a nationwide practice of shared decision-making: create model integration programs; provide legal incentives to ease (...) the transition; and incorporate shared decision-making into medical necessity determinations. (shrink)

Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...) sequencing or analysis of specific genomic conditions or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations. (shrink)

In this paper I put forward an ethical argument for the provision of extensive patient choice by the British National Health Service. I base this argument on traditional liberal rights to freedom of choice, on a welfare right to health care, and on a view of health as values-based. I argue that choice, to be ethically sustainable on this basis, must be values-based and rational. I also consider whether the British taxpayer may be persuadable with regard (...) to the moral acceptability of patient choice, making use of Rawls’ theory of political liberalism in this context. I identify issues that present problems in terms of public acceptance of choice, and also identify a boundary issue with regard to public health choices as against individual choices. (shrink)

Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected “choices” about specific interventions which either revolve around broad themes or whether or not to utilize particular interventions, both of which about most laypersons know little and, (...) more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility—creating a burden for which most patients are unprepared—and hence reducing healthcare providers’ responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients and physicians for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent patient’s values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue—or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity. (shrink)

It is reasonable to consider and trust that information taken from us about our medical health and history will be protected by rules on confidentiality and consent. Apart from very rare cases, perhaps of major public interest or for public health reasons, this information will not be shared with others without our consent. However, both a number of reforms in National Health Service patient data management policy and developments in the general law on privacy challenge this traditional view of (...) our control and choice over our medical information, as this article will show. In doing so, it analyses the question as to whether in spite of the rhetoric do any of us now really have choice over the access to and use of our medical data? In reality, our choices are limited and in any relationship of trust and shared decision making this ought to be transparent. (shrink)

Although the traditional physician ethic sees nothing objectionable about the doctor's influence over patients, superficial conceptions of the patient's right to self-determination imply that this influence may be manipulative. On the contrary, there are several different lines of argument which can reconcile self-determination with the physician's influence. Nevertheless, drawing the boundaries between legitimate methods of persuasion, and manipulation or coercion sometimes proves difficult.

Decisions related to births in the “gray zone” of periviability are particularly challenging. Despite published management guidelines, clinicians and families struggle to negotiate care management plans. Stakeholders must reconcile conflicting values in the context of evolving circumstances with a high degree of uncertainty within a short time period. Even skilled clinicians may struggle to guide the patient in making value–laden decisions without imposing their own values. Exploring the experiences of one pregnant woman and her caregivers, this case study highlights (...) how bias may undermine caregivers’ ability to meet their obligation to enhance patient autonomy and the moral distress they may experience when a patient’s values do not align with their own. Management strategies to mitigate the potential impact of bias and related moral distress are identified. The authors then describe one management strategy used in this case, facilitated ethics consultation, which is focused on thoughtful consideration of the patient’s perspective. (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)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that (...) self-testing provides a specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

Considered ahead of its time since the first publication in 1981, Medical Choices, Medical Chances provides a telescope for viewing how developments in the fields of medical research, medical technology, and health care organization are likely to influence the doctor-patient relationship in the 21st Century. The book explores this intricate web of relationships among doctors, patients, and families and offers a new framework for mastering the emotional and intellectual challenges of uncertainty, while at the same time providing tools for (...) all concerned to regain control from managed care. It is a must-read for all those interested in medicine and where it is headed in the new millennium. (shrink)

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

Background: Patients in different countries have different attitudes toward self‐determination and medical information. Little is known how much respect Japanese patients feel should be given for their wishes about medical care and for medical information, and what choices they would make in the face of disagreement. Methods: Ambulatory patients in six clinics of internal medicine at a university hospital were surveyed using a self‐administered questionnaire. Results: A total of 307 patients participated in our survey. Of the respondents, 47% would accept (...) recommendations made by physicians, even if such recommendations were against their wishes; 25% would try to persuade their physician to change their recommendations; and 14% would leave their physician to find a new one. Seventy‐six percent of the respondents thought that physicians should routinely ask patients if they would want to know about a diagnosis of cancer, while 5% disagreed; 59% responded that physicians should inform them of the actual diagnosis, even against the request of their family not to do so, while 24% would want their physician to abide by their family's request and 14% could not decide. One‐third of the respondents who initially said they would want to know the truth would yield to the desires of the family in a case of disagreement. Interpretations: In the face of disagreement regarding medical care and disclosure, Japanese patients tend to respond in a diverse and unpredictable manner. Medical professionals should thus be prudent and ask their patients explicitly what they want regarding medical care and information. (shrink)

BackgroundNew disease-modifying ways to treat Parkinson’s disease (PD) may soon become a reality with intracerebral transplantation of cell products produced from human embryonic stem cells (hESCs). The aim of this study was to assess what factors influence preferences of patients with PD regarding stem-cell based therapies to treat PD in the future.MethodsPatients with PD were invited to complete a web-based discrete choice experiment to assess the importance of the following attributes: (i) type of treatment, (ii) aim of treatment, (iii) (...) available knowledge of the different types of treatments, (iv) effect on symptoms, and (v) risk for severe side effects. Latent class conditional logistic regression models were used to determine preference estimates and heterogeneity in respondents’ preferences.ResultsA substantial difference in respondents’ preferences was observed in three latent preference patterns (classes). “Effect on symptoms” was the most important attribute in class 1, closely followed by “type of treatment,” with medications as preferred to other treatment alternatives. Effect on symptoms was also the most important attribute in class 2, with treatment with hESCs preferred over other treatment alternatives. Likewise for class 3, that mainly focused on “type of treatment” in the decision-making. Respondents’ class membership was influenced by their experience in treatment, side effects, and advanced treatment therapy as well as religious beliefs.ConclusionsMost of the respondents would accept a treatment with products emanating from hESCs, regardless of views on the moral status of embryos. Preferences of patients with PD may provide guidance in clinical decision-making regarding treatments deriving from stem cells. (shrink)

Savulescu has recently introduced the "rational non-interventional paternalist" model of the patient-doctor relationship. This paper addresses objections to such a model from the perspective of an anaesthetist. Patients need to make their own decisions if they are to be fully autonomous. Rational non-interventional paternalism undermines the importance of patient choice and so threatens autonomy. Doctors should provide an evaluative judgment of the best medical course of action, but ought to restrict themselves to helping patients to make their (...) own choices rather than making such choices for them. (shrink)

Patient choice, we might think, is the popular version of the ideas of informed consent and the principle of respect for autonomy and intimately connected to the politics of liberal individualism. There are various accounts to be given for why patient choice, in all its forms, has dominated thinking in bioethics and popular culture. All of them, I suggest, will make reference to the decline of paternalism. The bad old days of ‘doctor knows best’ are gone (...) and were replaced by the primacy of patient choice and informed consent.The response to the dominance of the principle of patient choice has been slow in building but it has come in a number of ways. Two sets of papers in this issue of the Journal of Medical Ethics show just how far this response has come and the degree to which the pendulum is swinging back in the other direction. Neil Levy's Feature article, ‘Forced to be free? Increasing patient autonomy by constraining it’, argues that we should go to greater lengths to correct patients' mistaken decisions . In the ‘Author meets critics’ section, Sarah Conly's book, Against Autonomy: Justifying Coercive Paternalism is the focus of comment . Both authors draw on a similar range of empirical evidence to undermine the sanctity of patient and individual choice. An array of commentators draw on these target pieces to give a clear picture of the ways in which the popular view can justifiably be undermined.Levy's paper focuses on the process of informed consent in clinical contexts. He argues that, while this process is crucially important, it systematically fails because of well-documented frailties of human reason. The evidence of these frailties comes from cognitive and social psychology, on biases and heuristics. The key question is how …. (shrink)

The historian of ancient medicine has in recent years enjoyed one advantage over his more literary colleagues, the regular accession of substantial new texts by major authors. These have included not only fragments preserved on papyri and the membra disiecta gathered from later encyclopaedias and medical writings, but also complete treatises, some consisting of several books. There is, however, one drawback. Very few of these new texts are preserved in their original language, or even in a mediaeval Latin translation; most (...) are to be found in versions done into Syriac, Arabic, or Hebrew, and hence they remain inaccessible to the average classicist without the intermediary of a further translation into a Western language. Besides, when such modern translations exist, they are not always easy to locate, even in the best-regulated libraries, and the supposed aridity of their contents acts as a further barrier to the dissemination of their information to students of ancient history and ancient philosophy. This paper is intended to bring to wider notice the most recent of such arrivals, and, by concentrating on what it has to say about Antonine society, to draw the attention of ancient historians to material that they might well overlook. (shrink)

Smokers impose a terrible cost on all of the rest of us. Those who choose to smoke are more likely than nonsmokers to suffer from cancer, heart disease, and a host of other diseases that require intensive and expensive medical intervention. Although they may suffer these diseases, we all pay for their habit through higher healthcare costs, which are reflected in higher insurance premiums, higher taxes, and fewer healthcare resources available for nonsmokers. It is simply unfair for smokers to impose (...) this cost on the rest of us; they should bear this self-induced cost themselves. (shrink)

Can we draw substantive conclusions about the reasons for action agents have from premisses about the desires of their idealized counterparts? The answer is that we can. The argument for this conclusion is Rawlsian in spirit, focusing on the choices that our idealized counterparts must make simply in virtue of being ideal, and inferring from these choices the contents of the desires that they must have. It turns out that our idealized counterparts must have desires in which we ourselves figure (...) as both agents and patients, and in which others must figure too, though only as patients. (shrink)

Lilly has a story to tell. It is her story. She sits comfortably in her hospital bed, with a nasal cannula under her nose providing a steady stream of oxygen. She says she really does not need it now but is more comfortable with it. She straightens the hem of her hospital gown. She folds her hands and places them carefully on her lap. This diminutive, carefully groomed elderly woman, a widow for 7 years, likes to be presentable when she (...) has a guest." “Please sit down,” she says, pointing to the chair. She would be no more inviting if we were in her own living room. “You’re in the hospital. What happened?” “Heart problems”, she says. “Heart failure. I’ve been sick for years. I’m old, my heart is old. When it gets bad I have to struggle to breathe.” “Is that what happened this time?” “I didn’t know it was happening this time,” she says with some surprise. “I am very active. I go out every day, I do my shopping, cooking. I like to cook. I was walking. It started. The hill is very steep from the avenue to my house so I made nothing of it. Out of breath. I took my time, rested and then walked again. It was also hard for me to walk up the four flights to my apartment. I stopped every few steps. So what? An old lady getting tired and out of breath. Nothing new about that. I missed all the signs. Sonya didn’t. She’s a neighbour and when she saw me she said what she was seeing wasn’t right. I don’t know what she saw. I do know how I felt. I was getting sick … ". (shrink)

The American Journal of Bioethics, Volume 12, Issue 9, Page 6-7, September 2012.

It has been claimed that beneath the government rhetoric of patient choice, no real choice exists either in law or in National Health Service policy. Thus, choice is considered to be a fallacy in that patients are not able to demand specific treatment, but are only able to express preferences amongst the available options. This article argues that, rather than considering choice only in terms of patient autonomy or consumer rights, choice ought to (...) be seen as serving other functions: Choice serves as a mechanism of destabilisation, i.e., as a lever for change. This is apparent at the level of patient and doctor, and at the level of patient and health authority, but even more so, at the level of government. Patient choice, rather than benefiting the individual, can have effects on a wider scale. It encourages change and reform in healthcare practices and in the NHS institutions. (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)