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)

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)

In the United Kingdom, a number of National Health Service Clinical Commissioning Groups have proposed controversial measures to restrict elective surgery for patients who either smoke or are obese. Whilst the nature of these measures varies between NHS authorities, typically, patients above a certain Body Mass Index and smokers are required to lose weight and quit smoking prior to being considered eligible for elective surgery. Patients will be supported and monitored throughout this mandatory period to ensure their clinical (...) needs are appropriately met. Controversy regarding such measures has primarily centred on the perceived unfairness of targeting certain health states and lifestyle choices to save public money. Concerns have also been raised in response to rhetoric from certain NHS authorities, which may be taken to imply that such measures punitively hold people responsible for behaviours affecting their health states, or simply for being in a particular health state. In this paper, we examine the various elective surgery rationing measures presented by NHS authorities. We argue that, where obesity and smoking have significant implications for elective surgical outcomes, bearing on effectiveness, the rationing of this surgery can be justified on prognostic grounds. It is permissible to aim to maximise the benefit provided by limited resources, especially for interventions that are not urgently required. However, we identify gaps in the empirical evidence needed to conclusively demonstrate these prognostic grounds, particularly for obese patients. Furthermore, we argue that appeals to personal responsibility, both in the prospective and retrospective sense, are insufficient in justifying this particular policy. Given the strength of an alternative justification grounded in clinical effectiveness, rhetoric from NHS authorities should avoid explicit statements, which suggest that personal responsibility is the key justificatory basis of proposed rationing measures. (shrink)

This article argues for a ban on the performance of medically unnecessary genital normalizing surgeries as part of assigning a binary sex/gender to infants with intersex conditions on the basis of autonomy, regardless of etiology. It does this via a dis/analogy with the classic case in bioethics of Jehovah Witness (JW) parents' inability to refuse life-saving blood transfusions for their minor children. Both cases address ethical medical practice in situations where parents are making irreversible medical decisions on the basis of (...) values strongly held, identity, and relationship-shaping values—such as religious beliefs or beliefs regarding the inherent value of binary sex/gender—amidst ethical pluralism. Furthermore, it takes seriously—as we must in the intersex case—that the restriction of parents' right to choose will likely result in serious harms to potentially large percentage of patients, their families, and their larger communities. I address the objection that parents' capacity to choose is restricted in the JW case on the basis of the harm principle or a duty to nonmaleficence, given that the result of parent choice would be death. I provide evidence that this is mistaken from how we treat epistemic uncertainty in the JW case and from cases in which clinicians are ethically obligated to restrict the autonomy of nonminor patients. I conclude that we restrict the parents' right to choose in the JW case—and should in the case of pediatric intersex surgery—to secure patient's future autonomy. (shrink)

The notion of choice and its individualistic underpinnings is fundamentally inconsistent with the collectivist NHS ethosIn both the policy1 and academic2 literatures, the issue of extending patient choice in the UK National Health Service is currently a much discussed issue. From December 2005—for example, general practitioners will be required to offer patients needing elective surgery the choice of five providers at the point of referral.1 Choice is often thought of as an intrinsically good thing; that is, that people value (...) choice in and of itself.3 A probable underlying reason for this belief is that choice is tied in with the notion of individual autonomy, or freedom, a concept that looms large in ethical theories of the good. Beauchamp and Childress—for example, classified respect for …. (shrink)

Introduction: The decision of “do not attempt resuscitation” in the event of cardiopulmonary arrest is usually made when the patients are critically ill and cannot make an informed choice. Although, various professional bodies have published guidelines, little is know about the patients’ own views regarding DNAR discussion.Aim: The aim of this study was to determine patients’ attitudes regarding discussing DNAR before they are critically ill.Methods: A prospective study was performed in a general out patients department. A questionnaire was distributed to (...) consecutive outpatients along with an explanatory leaflet in the adult outpatient clinic.Results: 364 patients completed the questionnaire . 90% of respondents wanted all patients to be asked regarding DNAR decision at some point during a hospital admission. The majority would not find a DNAR discussion distressing. Only 10% would find it upsetting, however, 48% of these still wanted a discussion. 37% of respondents wanted to discuss DNAR decisions on admission; 32% in outpatients; 17% at consent for surgery, 14% when they are critically ill. 87% of respondents would not object to their relatives being involved in making decisions about their resuscitation status. However, only 12% of the subjects in the study had been involved in discussing the resuscitation status of a relative and 21% would not be comfortable to discuss a relative’s resuscitation status. Although 33% of patients preferred their resuscitation status to simply be documented within their clinical notes, 77% wanted it to be more easily accessible.Conclusions: This study suggests that contrary to current practice most patients want to discuss their DNAR status prior to becoming critically ill. This includes half of the small number that find it distressing to discuss. Although most patients are comfortable with relatives being involved in discussing DNAR, a significant proportion do not want their relatives to be asked. Furthermore, once a decision has been made, the majority of patients want it to be more accessible than current practice allows. (shrink)

Introduction: The decision of “do not attempt resuscitation” in the event of cardiopulmonary arrest is usually made when the patients are critically ill and cannot make an informed choice. Although, various professional bodies have published guidelines, little is know about the patients’ own views regarding DNAR discussion.Aim: The aim of this study was to determine patients’ attitudes regarding discussing DNAR before they are critically ill.Methods: A prospective study was performed in a general out patients department. A questionnaire was distributed to (...) consecutive outpatients along with an explanatory leaflet in the adult outpatient clinic.Results: 364 patients completed the questionnaire . 90% of respondents wanted all patients to be asked regarding DNAR decision at some point during a hospital admission. The majority would not find a DNAR discussion distressing. Only 10% would find it upsetting, however, 48% of these still wanted a discussion. 37% of respondents wanted to discuss DNAR decisions on admission; 32% in outpatients; 17% at consent for surgery, 14% when they are critically ill. 87% of respondents would not object to their relatives being involved in making decisions about their resuscitation status. However, only 12% of the subjects in the study had been involved in discussing the resuscitation status of a relative and 21% would not be comfortable to discuss a relative’s resuscitation status. Although 33% of patients preferred their resuscitation status to simply be documented within their clinical notes, 77% wanted it to be more easily accessible.Conclusions: This study suggests that contrary to current practice most patients want to discuss their DNAR status prior to becoming critically ill. This includes half of the small number that find it distressing to discuss. Although most patients are comfortable with relatives being involved in discussing DNAR, a significant proportion do not want their relatives to be asked. Furthermore, once a decision has been made, the majority of patients want it to be more accessible than current practice allows. (shrink)

Objective: To examine students’ attitudes and potential behaviour to a possible intimate relationship with a patient as they pass through a modern medical curriculum.Design: A cohort study of students entering Glasgow University’s new learner centred, integrated medical curriculum in October 1996.Methods: Students’ pre year 1 and post year 1, post year 3, and post year 5 responses to the “attractive patient” vignette of the Ethics in Health Care Survey instrument were examined quantitatively and qualitatively. Analysis of students’ multi-choice answers enabled (...) measurement of the movement towards professional consensus opinion. Analysis of written justifications helped determine whether their reasoning was consistent with professional consensus and enabled measurement of change in knowledge content and recognition of the values inherent in the vignette. Themes on students’ reasoning behind their decision to enter a relationship or not were also identified.Results: No significant movement towards consensus was found at any point in the curriculum. There was little improvement in students’ performance in terms of knowledge content and their abilities to recognise the values inherent in the vignette. In deciding to enter a relationship with the patient the most frequently used reasoning was that it could be justified if the patient changed their doctor.Conclusions: Teaching on the subject of sexual or improper relationships between doctors and patients, including relationships with former patients requires to be made explicit. Case based teaching would fit in with the ethos of the problem based, integrated medical curriculum. (shrink)

Background: Concern has been growing in the academic literature and popular media about the licensing, introduction and adoption of surgical devices before full effectiveness and safety evidence is available to inform clinical practice. Our research will seek empirical survey evidence about the roles, responsibilities, and information and policy needs of the key stakeholders in the introduction into clinical practice of new surgical devices for pelvic floor surgery, in terms of the underlying ethical principals involved in the economic decision-making process, (...) using the example of pelvic floor procedures.Methods/DesignOur study involves three linked case studies using, as examples, selected pelvic floor surgery devices representing Health Canada device safety risk classes: low, medium and high risk. Data collection will focus on stakeholder roles and responsibilities, information and policy needs, and perceptions of those of other key stakeholders, in seeking and using evidence about new surgical devices when licensing and adopting them into practice. For each class of device, interviews will be used to seek the opinions of stakeholders. The following stakeholders and ethical and economic principles provide the theoretical framework for the study:Stakeholders - federal regulatory body, device manufacturers, clinicians, patients, health care institutions, provincial health departments, and professional societies. Clinical settings in two centres (in different provinces) will be included.Ethics - beneficence, non-maleficence, autonomy, justice.Economics - scarcity of resources, choices, opportunity costs.For each class of device, responses will be analysed to compare and contrast between stakeholders. Applied ethics and economic theory, analysis and critical interpretation will be used to further illuminate the case study material.DiscussionThe significance of our research in this new area of ethics will lie in providing recommendations for regulatory bodies, device manufacturers, clinicians, health care institutions, policy makers and professional societies, to ensure surgical patients receive sufficient information before providing consent for pelvic floor surgery. In addition, we shall provide a wealth of information for future study in other areas of surgery and clinical management, and provide suggestions for changes to health policy. (shrink)

Informed consent is an essential step in helping patients be aware of consequences of their treatment decisions. With surgery, it is vitally important for patients to understand the risks and benefits of the procedure and decide accordingly. We explored whether a written IC form was provided to patients; whether they read and signed it; whether they communicated orally with the physician; whether these communications influenced patient decisions. Adult postsurgical patients in nine general hospitals of Italy’s Campania Region were interviewed (...) via a structured questionnaire between the second and seventh day after the surgery at the end of the first surgical follow up visit. Physicians who were independent from the surgical team administered the questionnaire. The written IC form was given to 84.5% of those interviewed. All recipients of the form signed it, either personally or through a delegate; however, 13.9% did not know/remember having done so; 51.8% said that they read it thoroughly. Of those who reported to have read it, 90.9% judged it to be clear. Of those receiving the written consent form, 52.0% had gotten it the day before the surgery at the earliest 41.1% received it some hours or immediately before the procedure. The written IC form was explained to 65.6% of the patients, and 93.9% of them received further oral information that deemed understandable. Most attention was given to the diagnosis and the type of surgical procedure, which was communicated respectively to 92.8 and 88.2% of the patients. Almost one in two patients believed that the information provided some emotional relief, while 23.2% experienced increased anxiety. Younger patients and patients with higher levels of education were more likely to read the written IC form. The written IC form is not sufficient in assuring patients and making them fully aware of choices they made for their health; pre-operative information that was delivered orally better served the patients’ needs. To improve the quality of communication we suggest enhancing physicians’ communication skills and for them to use structured conversation to ensure that individuals are completely informed before undergoing their procedures. (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)

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)

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)

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)

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)

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)

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)

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)

Background Informed consent is an integral component of good medical practice. Many researchers have investigated measures to improve the quality of informed consent, but it is not clear which techniques work best and why. To address this problem, we propose developing a core outcome set to evaluate interventions designed to improve the consent process for surgery in adult patients with capacity. Part of this process involves reviewing existing research that has reported what is important to patients and doctors in (...) the informed consent process. Methods This qualitative synthesis comprises four phases: identification of published papers and determining their relevance; appraisal of the quality of the papers; identification and summary of the key findings from each paper while determining the definitiveness of each finding against the primary data; comparison of key themes between papers such that findings are linked across studies. Results Searches of bibliographic databases returned 11,073 titles. Of these, 16 studies met the inclusion criteria. Studies were published between 1996 and 2016 and included a total of 367 patients and 74 health care providers. Thirteen studies collected data using in-depth interviews and constant comparison was the most common means of qualitative analysis. A total of 94 findings were extracted from the primary papers and divided into 17 categories and ultimately 6 synthesised findings related to: patient characteristics, knowledge, communication, the model patient, trust and decision making. Conclusions This qualitative meta-aggregation is the first to examine the issue of informed consent for surgery. It has revealed several outcomes deemed important to capture by patients and clinicians when evaluating the quality of a consent process. Some of these outcomes have not been examined previously in research comparing methods for informed consent. This review is an important step in the development of a COS to evaluate interventions designed to improve the consent process for surgery. Registration The study protocol was registered on the international prospective register for systematic reviews. (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)

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.

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)

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)

In the nineteenth and early twentieth centuries, scientific and technological developments made surgery safer, more reliable, and, with the corresponding increase in experimentation permitted, more exploratory and successful than ever before. The age of the heroic surgeon, however, obscured procedures that relied on the patient’s cooperation for a final, positive outcome. This essay focuses on the debates surrounding cleft palate surgery in Britain, Europe, and North America between about 1800 and 1930, where the constancy of failure dogged the (...) surgeon, even with improved operative surroundings. Although an anatomical correction could eventually be secured by surgery, without the patient’s participation in learning “normal” speech, the ultimate result was unsuccessful. Patient responsibility and self-control became, therefore, the key to success. By exploring what this meant for patients, their families, and surgeons, a new way of thinking about surgical outcomes, even during a period of increasing confidence in surgery, can be posited. -/- . (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)

Aim: To assess, against a checklist of specific areas of required information and using standard published criteria, to what extent leaflets given before cataract surgery provided patients with enough information to give adequately informed consent.Method: Twelve ophthalmology departments in the West Midlands region were asked to submit the cataract information leaflets given to their patients at the preoperative assessment for analysis. Using criteria published by the General Medical Council, British Medical Association, and Medical Defence Union the leaflets were assessed (...) for their contribution to informed consent for patients considering cataract surgery. Leaflets were scored according to the information they provided on: diagnosis, prognosis, treatment options, costs to the patient, details about the procedure, its purpose, likely benefits, how to prepare for it, what to expect during and after the operation, and the common as well as serious complications that may occur. The readability of the information was also assessed.Results: All the units’ leaflets provided information on diagnosis, the lifestyle changes required postoperatively, and cost involved to the patient. Only five units had leaflets that mentioned the risks involved in cataract surgery. The other areas of information were covered by 50–75% of the leaflets. Fifty per cent of the leaflets included a diagram. The average SMOG readability score was high.Conclusion: Although present cataract information leaflets make some contribution to the process of informed consent, most do not address important areas outlined by the General Medical Council. Many of the areas of information that are required for informed consent could easily be covered, and should be borne in mind when designing patient information leaflets. Resources are available on the internet including toolkits, guides, and means of assessment for the production of patient information leaflets. (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.

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)