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)

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)

Metabolic Bariatric Surgery (MBS) has gained significant popularity over the past decade. Legally and ethically, physicians should obtain the patient’s voluntary and informed consent before proceeding with the surgery. However, the decision to undergo MBS is often influenced by external factors, prompting questions about their impact on the patient’s ability to choose voluntarily. In addressing this issue, the study focuses on two key questions: first, which factors influence MBS candidates during the decision-making process, and second, whether these influences (...) undermine the candidates' ability to make decisions voluntarily, according to theories of autonomy. The study employed a qualitative methodology, conducting 21 in-depth semi-structured interviews with adults who had undergone bariatric surgery. The conclusions were drawn from an inductive analysis of the interview data conducted using a grounded theory approach, and by applying theories of autonomy to the empirical findings. Our study indicates that interviewees were exposed to different external influences, which had diverse effects on the interviewees' decision to undergo MBS. Category 1 influences included intentional attempts to induce people, through arguments and reason, to accept the attitudes advocated by the persuader in support of the surgery. Applying theoretical accounts of autonomy to these influences suggests that they did not compromise the interviewees’ autonomy. Category 2 influences included threats made by a physician or a family member. These influences were found to undermine autonomy. Category 3 influences included emotional manipulation, informational manipulation, and the construction of medical and social norms. Manipulations and norms were experienced differently by different interviewees, and their impact on autonomy varies depending on the theoretical framework applied. Acknowledging that the influences exerted on MBS candidates may undermine their ability to make autonomous decisions regarding surgery, we suggest reformulating the duties that apply to medical practitioners with respect to informed consent to MBS. Medical practitioners who discuss the option of MBS with candidates should be aware of the various factors that influence this choice, and actively promote the candidates’ ability to make autonomous decisions. (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)

For more than sixty years, surgeons have used bioethical strategies to promote patient self‐determination, many of these now collectively described as “informed consent.” Yet the core framework—understanding, risks, benefits, and alternatives—fails to support patients in deliberation about treatment. We find that surgeons translate this framework into an overly complicated technical explanation of disease and treatment and an overly simplified narrative that surgery will “fix” the problem. They omit critical information about the goals and downsides of surgery and present (...) untenable options as a matter of patient choice. We propose a novel framework called “better conversations.” Herein, surgeons provide context about clinical norms, establish the goals of surgery, and comprehensively delineate the downsides of surgery to generate a deliberative space for patients to consider whether surgery is right for them. This paradigm shift meets the standards for informed consent, supports deliberation, and allows patients to anticipate and prepare for the experience of treatment. (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)

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)

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)

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)

We are grateful for the thoughtful commentaries to our article on patient selection for first clinical trials of cardiac xenotransplantation1 because they give us the opportunity to clarify and further sharpen our arguments in this response. In our article, we proposed a multicriteria approach to selecting patients for first clinical trials of (cardiac) xenotransplantation, encompassing the four criteria medical need, capacity to benefit, patient choice and compliance (used as an exclusion criterion). We also argued that clinical trials following clearly defined (...) study protocols should be favoured over further single compassionate use cases to gather reliable and valid knowledge about the benefits and risks of xenotransplantation. Continuous poor outcomes in compassionate use cases can impede a technology’s development. For example, early heart transplants led to moratoria in several countries due to public and professional backlash. This historical concern is also echoed within the xenotransplantation research community and should be considered when arguing, as Aparicio et al do in their comment, for continuing the expanded access pathway to further establish clinical xenotransplantation.2 We agree with Aparicio et al that patients in general should have access to innovative treatment strategies via expanded access. In cardiac xenotransplantation, however, only a small number of patients can currently be offered a xenotransplant because of limited treatment capacities with …. (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)

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)

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)

Surgery is the most invasive intervention taken on behalf of health, but significant discrepancies exist between patient expectations and standard operating room practices, especially in teaching institutions. These discrepancies arise from the dual obligations of surgical faculty to present and future patients. On the one hand, in line with a patient’s autonomous election of a procedure and choice of a doctor, faculty are charged with treating patients to the utmost capacity of their knowledge and skill; on the other, in (...) support of a critical community good, they must prepare novice physicians to treat those who will require at least this level of knowledge and skill in the future. Within a broad, contrasting framework of approaches to knowledge, judgment, experience, and nature as described by Hume and Kant, this article explores the complicated concepts of trust, loyalty, assessment, and communications that presently exist between surgical patients, faculty surgeons, and surgical trainees within academic medical centers. (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)

Patients are usually granted autonomy rights, including the right to consent to or refuse treatment. These rights are commonly attributed to patients if they fulfil certain conditions. For example, a patient must sufficiently understand the information given to them before making a treatment decision. On the one hand, there is a large group of patients who meet these conditions. On the other hand, there is a group that clearly does not meet these conditions, including comatose patients or patients in the (...) late stages of Alzheimer’s disease. Then there is a group of patients who fall into the range in between. At the lower end of this range are so-called ‘marginal agents,’ which include young children and patients in the middle stages of Alzheimer’s disease. They also do not meet the typical requirements for autonomy, which is why they are usually granted fewer autonomy rights. However, some of them are capable of ‘pre-forms’ of autonomy that express what is important to them. These pre-forms differ from mere desires and reflect the identification/authenticity condition of autonomy. They have something in common with autonomous attitudes, choices, and actions – namely, they express the _value_ of autonomy. As I will argue, autonomy is a value worthy of protection and promotion – even in its non-reflexive forms. Against this background, it becomes clear _why_ we have autonomy duties, more precisely positive, autonomy-enabling duties, towards marginal agents and why we should give them as much attention as autonomy duties towards competent patients. (shrink)

Most people know precious little about the risks and benefits of participating in a clinical trial--a medical research study involving some innovative treatment for a medical problem. Yet millions of people each year participate anyway. Patients at Risk explains the reality: that our current system intentionally hides much of the information people need to make the right choice about whether to participate. Witness the following scenarios: -Hundreds of patients with colon cancer undergo a new form of keyhole surgery at (...) leading cancer centersnever -Tens of thousands of women at high risk of developing breast cancer are asked to participate in a major research study. They are told about the option of having both breasts surgically removed but not told about the option of taking a standard osteoporosis pill that might cut the risk of getting breast cancer by one-half or more. Patients at Risk written by two nationally prominent experts, is the first book to reveal the secrets that many in the research establishment have fought long and hard to keep from patients. It shows why options not commonly knownincluding getting a new treatment outside of a research studycan often be the best choice. It explains how patients can make good decisions even if there is only limited information about a treatments effect. And it does this through the eye-opening stories of what is happening daily to thousands of people. Day after day, we are learning how little we know about what really works. Headlines regularly announce that a previously unquestioned treatmenthormone replacement therapy, drugs such as Vioxx or Celebrexmay now be much riskier than we thought. The latest book in a surge of recent books criticizing the medical establishment (but the first to look at clinical trials specifically), Patients at Risk helps to empower patients to survive in a world of medical uncertainty, and makes positive recommendations for systemic reform. (shrink)

Suppose that a patient is receiving treatment options from her doctor. In one case, the doctor says, “the surgery has a 90% survival rate.” Now, suppose the doctor instead said, “the procedure has a 10% mortality rate.” Predictably, the patient is more likely to consent on the first description and more likely to dissent on the second. This is an example of a framing effect. A framing effect occurs when “the description of [logically-equivalent] options in terms of gains (positive (...) frame) rather than losses (negative frame) elicits systematically different choices.” Framing effects are ubiquitous, but they are particularly troublesome in medicine. Many worry that there is tension between valuing informed consent and using framing effects in clinical settings. In this paper, I answer this question: if an individual is subject to a framing effect when she gives her consent, does this undermine the validity of her consent? I argue that framing effects do not undermine consent in general. (shrink)

This paper presents the foundation upon which the contemporary knowledge of body integrity dysphoria (BID) is built. According to the World Health Organisation’s International Classification of Diseases, 11th edition (ICD-11), the main feature of BID is an intense and persistent desire to become physically disabled in a significant way. Three putative aetiologies that are considered to explain the insurgence of the condition are discussed: neurological, psychological and postmodern theories. The concept of bodily representation within the medical context is highlighted, with (...) the concept of dysphoria, which was brought to the fore with the introduction of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5), and the ICD-11. Contemporary issues of “justice” are addressed to identify ethically relevant distinctions between BID and sex reassignment surgery. It is argued that there is no ethically relevant difference between the BID actor’s desire for invasive surgical intervention and the wish of gender dysphoric individuals to undergo sex reassignment surgery procedures. Some BID actors self-mutilate, and this presents medical professionals with difficult choices regarding whether or not to intervene in order to satisfy the BID patient’s desire. Both abstention and intervention may lead to severe ethical complications for doctors and patients despite the positive outcomes in terms of quality of life for BID individuals who manage to undergo such procedures. (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)

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 lieu of an abstract, here is a brief excerpt of the content:Lisa’s StoryLisa P. (wife of patient) and Jeanne KerwinMy husband suffered from sudden onset of heart failure with a very low ejection fraction and was on IV Milrinone at the age of 47. One of the most powerful things he told me was that he was not afraid to die and therefore did not want to move forward with Milrinone. He eventually “did it for the kids.” After the (...) Milrinone drip was no longer working, he was offered an LVAD (left ventricular assist device) to keep him alive. He refused, but the doctor again convinced him to “do it for your kids” and said, “we put these devices in 80-year-olds.” He did not have time to explore any other options and reluctantly accepted the LVAD. It was implanted in May of 2014 in a very long and complicated surgery with a long and difficult recovery. He was in the hospital for a long time, and then he refused to go to rehab upon discharge, making it difficult for our family to manage, as he was extremely weak and needed care of his wound dressing. He worried about the financial [End Page 7] impact of a heart transplant and the medications required, as we were already struggling with the medical bills. He refused to have more surgery with the potential complications and never agreed to get on the transplant waiting list.After the implanted LVAD, my husband was not able to do most of what he loved in life. He couldn’t work (he was a truck driver), he couldn’t go fishing or swimming in the ocean, he couldn’t go hunting and fishing, and his overall physical condition was so poor that he couldn’t cook, garden and, most aggravating to him, he could not take a regular hot shower. The LVAD had to be covered with plastic in order to avoid getting the drive-line area wet, so bathing was a complicated process. He had trouble with stairs, had neuropathic pain in his legs from diabetes, and because of the pain medications, he felt cloudy and dizzy and slept most of the day in his recliner. I took care of him, even after I had to go back to work, and at the same time, I managed our two children (ages 9 and 12 at the time of LVAD).After almost two years of living with the LVAD, multiple hospitalizations for GI bleeds then seizures, more medications, and weekly blood draws for INR1, my husband requested that the LVAD be de-activated and that he be allowed to die of his heart failure. He described his life as “miserable.” He watched as his misery impacted his children and me. He suffered daily and had none of the joys that made life worth living for him. When we approached the cardiac team that implanted and monitored his LVAD with his request, they said “no.” They would not de-activate the LVAD because it was working. It was keeping him alive and he had no other terminal illness. His palliative doctor, who was treating his pain, also heard his request and told us to call for an “ethics consult” to determine if he would be “allowed” to have the LVAD de-activated. We got the number and called on March 31, 2016.At the time of the call to Ethics, we had no idea what “Ethics” was, other than a general definition of the word ethics as in professional behaviors and such. We did not know what to expect but we called. We would never have known to call “Ethics” if the palliative doctor had not advised us to do so, and my husband might have suffered a longer, more painful life both mentally and physically prolonged by the LVAD.We explained the request to the ethics consultant. She listened to my husband describe his daily living and his dissatisfaction with the quality of his life, his physical and emotional suffering, and his wish to rid himself of the LVAD and allow nature to take its course. There was actually no decision to be made on his part. He had already made up... (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.

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)

Consider the following hypothetical scenario: A patient suffering constant abdominal pain is referred to State Hospital A from her local clinic after not responding to simple analgesics for chronic pelvic pain associated with irregular menstruation. The doctors at State Hospital A discover that she has a suspicion of adenomyosis. She gives written informed consent for a hysterectomy. During routine postoperative check-ups she reports no alleviation of the pelvic pain, urinary frequency along with burning on micturition and a persistent vaginal discharge. (...) Preoperatively, she was not told that the surgeons had inserted a surgical mesh to prevent vault prolapse. She is given antibiotics and further simple analgesia. As her symptoms do not improve she self-refers to State Hospital B. She is informed that she needs a CAT scan. However, the hospital’s scanner has been out of order for three years. She is advised to go to State Hospital C, where the scanner works, but is not given a referral note. She is told by Hospital C that the doctors are too busy to see her, and as she does not have an appointment, and is not an emergency case she should go back to Hospital A. She does not want to go back to Hospital A, as during her last visit there, nursing staff accused her of being a nuisance and escorted her off the premises. She approaches Private Hospital D, where her abdomen and pelvis are scanned. The scan shows the surgical mesh inside her pelvis which had disintegrated. She is told that it is too risky to remove all the fragments, but that some could be removed at a cost - which she could not afford. The surgeon refers her back to State Hospital A with a referral note and copy of the CAT scan report. (shrink)

Liver transplantation is the treatment of choice for many forms of liver disease. Unfortunately, the scarcity of cadaveric donor livers limits the availability of this technique. To improve the availability of liver transplantation, surgeons have developed the capability of removing a portion of liver from a live donor and transplanting it into a recipient. A few liver transplants using living donors have been performed worldwide.Our purpose was to analyze the ethics of liver transplants using living donors and to propose guidelines (...) for the procedure before it was introduced in the United States. We used a process of research ethics consultation that involves a collaboration between clinical investigators and clinical ethicists. We concluded that it was ethically appropriate to perform liver transplantation using living donors in a small series of patients on a trial basis, and we published our ethical guidelines in a medical journal before the procedure was introduced. We recommend this prospective, public approach for the introduction of other innovative therapies in medicine and surgery. (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)

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 (now enshrined in legislation) 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)

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)

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)

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)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 14.3 (2004) vii-viii [Access article in PDF] John C. Fletcher 1931-2004 John Fletcher was one of the pioneers in the still-young field of bioethics. In this short tribute, I can only hope to highlight a few of the many contributions he made to the field.For many of us, our first introduction to John occurred in October 1971. At an international symposium sponsored by the (...) Kennedy Foundation, the film "Who Should Survive?" depicted the dramatic case of an infant with Down syndrome and an intestinal blockage. The parents of the infant refused surgery to relieve the obstruction, and the healthcare providers for the infant decided not to pursue a court order permitting the surgery. During a period of approximately two weeks the infant was allowed to die.In the second part of "Who Should Survive?" John was one of several panelists invited to discuss the decisions made in this case. After acknowledging how troubling the infant's death was to him, John nonetheless sought to be empathic with the parents. He pointed out that in the re-enactment of the case the faces of the parents were never seen, and he worried that the film did not permit the parents to discuss the reasons for the choice they had made. John realized that his position would not be shared by most other panelists. Yet he had the courage to take an unpopular stand and to challenge other panelists—and the audience—not to reach premature closure on complex ethical dilemmas.Already in 1967, John had begun contributing to the literature of bioethics. His essay "Human Experimentation: Ethics in the Consent Situation," appeared in Law and Contemporary Problems. At the time, John was deeply immersed in studying the ethical dimensions of research with human subjects at the NIH Clinical Center. Paul Ramsey cited John's work with appreciation in his 1970 book, The Patient as Person. By the time he completed his dissertation at Union Theological Seminary in 1969, John was arguably one of the best trained bioethicists in the world—before there was a field of bioethics.After serving as chaplain, teaching at Virginia Theological Seminary, and founding and leading a seminary without walls in Washington, DC, John became the chief of the ethics program at the NIH Clinical Center in 1977. There he had the unenviable task of providing a second review for all clinical protocols emerging from the intramural programs of the NIH institutes. John discovered that in some cases the institutional review boards of the institutes had overlooked important ethical questions. This role also [End Page vii] required courage. At times John found it necessary to challenge senior NIH researchers, even institute directors, and to request protocol revisions that in his view were required for the protection of human subjects.In 1980, after Martin Cline had performed an unauthorized gene transfer experiment involving thalassemia patients, John joined with physician W. French Anderson to write an essay entitled "Gene Therapy in Human Beings: When Is It Ethical to Begin?" [New England Journal of Medicine 303: 1293-97]. Not only did this essay help to defuse a potentially explosive problem for NIH, which had funded Cline's research. It also provided a set of guidelines for the conduct of human gene transfer research that is of continuing relevance today.At times John disagreed with federal policies on research, for example, conservative policies on human embryo research. He also chafed at the idea of subjecting his publications to prior NIH review, both for accuracy and for political correctness. Thus, he welcomed the opportunity to move to the University of Virginia in 1987. There his academic career flowered, and he enjoyed some of his most productive years of research and writing.Among his many contributions during these later years, John participated as Committee co-chair in an effort to "redress the wrongs of Tuskegee." The Tuskegee Syphilis Study Legacy Committee proposed in May 1996 that President Clinton apologize to the participants in the Tuskegee study on behalf of the federal government. In May 1997, the President did in... (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 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)

In lieu of an abstract, here is a brief excerpt of the content:Dying is DifficultClarice DouilleHayden had been a constant in my life since I was eight, as our families were close. He was a single dad who loved to talk and always had a smile on his face. He was obsessed with anything related to his kids and attended every school activity or sporting event.In 2015, Hayden was diagnosed with stage III colon cancer. He was adamant that he didn't (...) want to share any information about his condition with his kids, waiting several months until the eve of his first surgery before breaking the news to them. Hayden made the operation seem trivial and underplayed the severity of the chemotherapy treatments that would follow. Despite whatever he was feeling, he seemed committed to maintaining his happy demeanor, which was probably an effort to convince himself and others to feel better about the situation.Hayden survived his first operation and rounds of chemotherapy. And, over the next several years, he chose to undergo a regimen of additional aggressive treatments, submitting to surgery after surgery, as well as several more rounds of chemotherapy, followed by radiation treatments. I was already working as a home care aide, and because of the close relationship between our families, Hayden asked me to help as his caregiver, including running errands and babysitting for his younger kids. Hayden made it clear that he wanted his kids to remain ignorant of the progression of his condition so that they wouldn't worry and become anxious. It seemed he was motivated by his desire to preserve his young kids' happiness and innocence. In hindsight, I think this prevented his kids from being able to fully savor moments with their dad or prepare for the possibility of his death. I also think Hayden was trying to shelter himself from his own fear of mortality. And it was this fear that made Hayden a "difficult patient."Hayden suffered both physically and mentally, not only from his disease and treatment but also from his fear of mortality. I noticed how he tried to hide his suffering by shutting himself in his bedroom and making excuses when he wasn't eating. He often forgot to take his medications; he refused to use pill boxes and objected to reminders from others. The consequences often meant additional hospitalizations. I wish more palliative options had been introduced to him earlier in his disease course. I believe a palliative care team would have encouraged Hayden to think about and discuss death, helped him change his outlook for treatment and living with cancer, and most importantly, enabled him to better enjoy the remainder of his life with his kids.Nevertheless, I understood why Hayden was worried about his kids, and I could see how his recent personal experiences since his initial diagnosis might have contributed to his choice for the most aggressive treatments: his sister and both his parents had died, leaving no other relatives to care for his kids. He wanted to be there for his kids, yet the side effects of treatment made him so sick that he couldn't leave his bed. He couldn't even do the very activities that made him want to live.Hayden was an extremely social person, but when he found out his cancer was terminal, he [End Page E6] isolated himself from his loved ones for nearly six weeks. Even though I was likely the only person he was communicating with, as the person who helped him and his family, I often didn't see him for weeks at a time. He would text me requests, leave money on the front table, and ask me to drop off the items I purchased and then leave. Hayden's kids continued their daily routines, despite comments from them about his absence.In early August 2020, Hayden was admitted to the hospital. His doctor called the kids at home and told them that their dad would immediately be enrolled in hospice care. They were, as one might expect, shocked at this news. They knew their dad was sick and had been dealing with his cancer for years. But Hayden's health deteriorated slowly, and the kids hadn't known... (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 lieu of an abstract, here is a brief excerpt of the content:The Right HeartIngrid GouldI remarked to a friend, “We haven’t spoken since my arrest!” Alarm and confusion clouded his face, given my half-century of squeaky-clean living. “Cardiac arrest,” I clarified. “The fire department rebooted me.”An electrophysiologist diagnosed Arrhythmogenic Right Ventricular Dysplasia, prescribed medication, and implanted a defibrillator. For the next three-and-a-half years, he helped me live with a disease I didn’t know existed until he told me I had (...) it.The disease progressed—an ironic, disease-centric term since its advancement was to my detriment— prompting my cardiologist to recommend seeing someone who specialized in heart failure. I resisted the very idea of heart failure, a terrible term for a struggling organ, but took her advice and scheduled an appointment.The new cardiologist urged transplant testing, a lengthy process. I agreed, figuring that by the time I needed a new heart in 15–20 years, they’d be rolling off 3D printers.To record occasional transplant musings and inchoate fears and perhaps, over time, untangle them, I began journaling. I chronicled my passage through the echocardiogram, heart catheterization, 31 tubes of bloodwork, interviews with different clinical specialties, a pulmonary function test in a machine reminiscent of Star Trek’s Transporter, and more. Testing had barely begun when my medication stopped working—a Halloween shock.I began a harsher medication, underwent an ablation, and spent six weeks in a wearable defibrillator, a vest with abundant wires, and a purse-sized battery pack that made me resemble a character in [End Page 123] the Jetsons. This attire did not bring holiday comfort or joy to the TSA1 when I flew to visit my sister. As my R-waves faded to a whisper, I swapped the vest for a second implanted defibrillator, substantially more sensitive than the first.In early 2018, we learned I had qualified for transplant listing, though I wished to get as much mileage as possible from the original engine. My cardiologist warned, “There is no Plan B—no machine, device, or medication for the long-term. You will need a transplant.” He explained that since most cardiac patients have left-heart problems, companies develop products for the left side of the heart. My problem was on the right—a tiny market. He also cautioned that a patient needs to be sick enough to warrant transplant and well enough to remain a candidate, survive the surgery, and recover.Although clinically I was ready, I was not personally ready. I felt too good to trade an excellent quality of life for the promised miserable post-transplant year. The cardiologist wisely asked if I wanted to speak with another patient. When I requested someone beyond the dreaded first year, he put me in touch with two women who had received new hearts a few years earlier and befriended each other. They soon became my invaluable mentors and cherished friends. I will never forget seeing them stride into our first meeting and thinking, “They are beautiful! They look totally normal!”By May, climbing four flights of stairs took as much effort as five used to take. Tests confirmed further deterioration and suggested I had 7–13 months of declining health before my heart would give out completely. We chose a date for hospital admission, and I started telling people outside my immediate family. Most were flabbergasted, believing heart transplants were the last hope of the desperately ill. I did not look moribund, though, apparently, I was.The eight months after my first transplant appointment let me prepare psychologically to bid farewell to my heart—the metaphor for kindness, love, and bravery in our culture—and to welcome a new organ from a generous person less medically fortunate than I.In the hospital, I met others awaiting their hearts. A sudden intimacy arises when mortal choices catapult people into a medical realm suggestive of science fiction. Add the emotional intensity that accompanies knowing your extended life comes courtesy of a person who breathes no more on this earth and you wonder how an organ recipient integrates sorrow and gratitude.Two weeks after I was hospitalized, my cardiologist informed me the wait was over... (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)

Tough Decisions presents many of the complex medical-ethical issues likely to confront practitioners in critical situations. Through fictional but true-to-life cases, vividly described in clinical terms, the authors force the reader to choose among different courses of action and to confront a range of possible consequences. A two-year-old has been diagnosed with a malignant brain tumor. Who should be allowed to make decisions about the child's surgery and subsequent therapy, and on what basis? A family history of Huntington's disease (...) emerges when a fiancee seeks genetic counseling. Who should be informed? An elderly patient suffers a cardiac arrest. Should "do-not-resuscitate" orders always be followed? How should legal liability affect medical decisions? Other ethical issues considered include surgical complications, patient autonomy, rights of the retarded, informed consent, euthanasia, and the fair allocation of finite resources. Each case presented conveys the drama and pressure of weighing alternatives, and the realistic consequences of the choices made. The authors show that ethical decision-making is not limited to "matters of life and death", and that it is not the decision but the ethical process by which it is made that gives the decision moral integrity. With realistic detail, Tough Decisions brings to life and makes the student share in the many complexities of ethical decision-making when the health and lives of patients are at stake. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Death Perception:How Temporary Ventilator Disconnection Helped my Family Accept Brain Death and Donate OrgansThomas B. FreemanThe night of my nephew’s closed head injury in Boston, I was on call as a neurosurgeon at Tampa General Hospital. I was therefore not shocked at first when my telephone rang at four o’clock in the morning, but I soon understood the severity of the tragic news. The next half hour was a (...) blur of frantic phone calls and devastating decisions leading to surgery to remove a subdural hematoma from my nephew’s head, even though he was only two brain stem reflexes away from brain death.I thought that my experience as a neurosurgeon would somehow help me. However, when my sister–in–law asked me if this was just like the other tragic closed head injuries that I had seen in 26 years of practice, my answer was very simple: this was the only severe closed head injury I had ever seen—in my family. At this point, I was no longer a neurosurgeon. I was an uncle. My nephew’s closed head injury overwhelmed both his brain’s capacity to survive and my entire family’s ability to think rationally or objectively while grieving so intensely.It is in this context that we were asked to consider organ donation. The appeal for organ donation is one of altruism. My nephew’s parents agreed that organ donation would be an important way to honor their son’s life, allow him to make one final contribution to save the lives of several patients, and help to bring peace to the family.I will never forget, however, my niece’s distraught response. She is altruistic by nature, but was tremendously conflicted by the choice to donate her own brother’s organs. At this point, all discussions about organ donation stopped until we could understand the source of her conflict. Since she did not have legal authority regarding the final decision, some family members wondered if organ donation should be allowed if she could not come to terms with the choice. She felt isolated, because she was the only person in the room who was experiencing conflict. As a neurosurgeon, I have always advised other families in this situation that they may have more peace if they can make such decisions unanimously, regardless of who has the ultimate legal authority for decision–making. This helps bring healing to the family, eliminates disruption of family values and unity, and reduces possible feelings of guilt.I asked my niece what she was feeling. She stated something that I had never heard before as a neurosurgeon. She had listened to the words that her brother was brain dead, but she felt that he was somehow still alive, since he was breathing on a ventilator and his heart was beating. She felt powerless due to her inability to do anything more for [End Page 9] him. She also wanted to be there when her brother “died,” which she would recognize by the cessation of his heartbeat. She would not abandon her brother.I searched for a way to respect my niece’s wishes and her legitimate request, while preserving the ability to proceed with organ donation. Solving this conundrum proved to be a pivotal part of the beginning of both her mourning process and acceptance of his death.As an uncle, I experienced the clear dissociation that modern medicine creates between medical care and the natural human process of recognizing and accepting death. My family observed the subtle difference between a deep coma and brain death. They noticed that my nephew’s color had changed when his temperature dropped to 94o F before the heating blanket was placed. They perceived the decrease in muscle tone when he stopped breathing faster than the ventilator rate. Outside of that, there was no significant difference in his appearance when he was “alive” or “dead.”In spite of heroic measures and superlative surgical and medical care, his closed head injury progressed unremittingly until he became brain dead 36 hours later. The diagnosis of “brain death” was pronounced to the family. Accepting the death of someone who is... (shrink)

Modern medicine is increasingly aware of the significance of patient autonomy in making treatment choices. This would seem to be particularly important where the therapy requested was "voluntary" as in fertility treatment or cosmetic surgery. However, the Hippocratic doctrine "Primum non nocere", seems especially relevant where the treatment sought may have a low chance of a successful outcome or even be life-threatening. Mrs A's case demonstrates the difficulty faced by the physician who wants to maximise her patient's autonomy, but (...) "Above all, do no harm". (shrink)

Definitions of health and disease are of more than theoretical interest. Understanding what it means to be healthy has implications for choices in medical treatment, for ethically sound informed consent, and for accurate assessment of policies or programs. This deeper understanding can help us create more effective public policy for health and medicine. It is notable that such contentious legal initiatives as the Americans with Disability Act and the Patients' Bill of Rights fail to define adequately the medical terms on (...) which their effectiveness depends. In Ethics and the Metaphysics of Medicine, Kenneth Richman develops an "embedded instrumentalist" theory of health and applies it to practical problems in health care and medicine, addressing topics that range from the philosophy of science to knee surgery."Embedded instrumentalist" theories hold that health is a match between one's goals and one's ability to reach those goals, and that the relevant goals may vary from individual to individual. This captures the normative implications of the term health while avoiding problematic relativism. Richman's embedded instrumentalism differs from other theories of health in drawing a distinction between the health of individuals as biological organisms and the health of individuals as moral agents. This distinction illuminates many difficulties in patient-provider communication and helps us understand conflicts between promoting health and promoting ethically permissible behavior. After exploring, expanding, and defending this theory in the first part of the book, Richman examines its ethical implications, discussing such concerns as the connection between medical beneficence and respect for autonomy, patient-provider communication, living wills, and clinical education. (shrink)