Accidental human immunodeficiency virus (HIV) infection of patients in health care settings raises the question about whether patients have a right to expect disclosure of HIV/AIDS diagnoses by their health workers. Although such a right – and the correlative duty to disclose – might appear justified by reason of standards of informed consent, I argue that such standards should only apply to questions of risks of and barriers to HIV infection involved in a particular medical treatment, not to (...) disclosure of personal diagnoses. Because the degree of risk of HIV infection is low and disclosure would also have damaging consequences for health workers, and because patient protection is available in other ways, it is argued that no such generalized right should be recognized. Keywords: duty to disclose, HIV infection, HIV/AIDS diagnosis, informed consent, right to know CiteULike Connotea Del.icio.us What's this? (shrink)

Physicians treating newly incapacitated patients often must navigate surrogate decision-makers through a difficult course of treatment decisions. Such a process can be complex. Physicians must not only explain the medical facts and prognosis to the surrogate, but also attempt to ensure that the surrogate arrives at decisions that are consistent with the patient's own values and wishes. Where these values and wishes are unknown, physicians must help surrogates make decisions that reflect the patient's best interests.

This article uses a case study to examine the conflicting rights of the patient to know a clinician;s HIV status and the clinician's right to privacy.

The rule that a patient should give a free, fully-informed consent to any therapeutic intervention is traditionally thought to express merely a right of the patient against the physician, and a duty of the physician towards the patient. On this view, the patient may waive that right with impugnity, a fact sometimes expressed in the notion of a right not to know. This paper argues that the rule also expresses a duty of the patient towards the (...) physician and a right of the physician against the patient. The argument turns, first, on the truism that a physician has no obligation to commit a battery, or unauthorized touching, and, second, on the thesis that a patient necessarily cannot consent to something that is unknown to him. The conclusion is drawn that a patient is not free to receive treatment voluntarily without knowledgeably authorizing it. CiteULike Connotea Del.icio.us What's this? (shrink)

Many people who have reached the age of majority still qualify as financial dependents of their parents, and may be registered as dependents on their parents’ medical schemes. This poses a practical conundrum, because major persons enjoy complete autonomy over their bodies to choose healthcare services as they please, including informational determination. However, their sensitive health information may end up being disclosed in the accounts rendered to their parents, as main members of medical schemes, thereby breaching their informational privacy, medical (...) confidentiality and possibly also damaging personal relationships. On the other hand, medical schemes must ensure that they strictly manage the business of their hospitalisation to ensure that they can adhere to their contractual and legal medical insurance obligations. Both major but financially dependent patients and medical schemes have good legal grounds to defend their respective positions. In this article, we will analyse and clarify the applicable legal and ethical grounds by considering medical confidentiality, the Protection of Personal Information Act, the Consumer Protection Act and the Medical Schemes Act and rules. We shall conclude with recommendations to accommodate the interests of both parties. (shrink)

This article examines the recent introduction of forced ultrasound-beforeabortion measures in select U.S. states as an intervention of gendered biopower. These measures are drafted based on model legislation entitled the Woman’s Right to Know Act. Such legislation exploits a discourse of women’s health, but invests in fetal “life” by regulating the behavior of pregnant women so as to promote the carrying of pregnancies to term; the legislation also represents childbirth and motherhood as in the interest of women’s health. (...) Ultimately, I contend that Right to Know measures give the state permission to override the choices, rights, and interests of the population of pregnant women as a whole in an attempt to “protect” and optimize a supposedly vulnerable fetal population. (shrink)

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

The ‘right not to know’ (RNTK) can be used by patients as a safeguard against the effects that certain medical information can have on their well-being. At first glance, one might reason it suitable for a patient to enact their RNTK. However, although Davies states that RNTK gives people the ability to both protect themselves from self-perceived harm and exercise their autonomy, I will argue that ‘not knowing’ hinders patients’ ability to exercise their existential freedom and represents what (...) Sartre calls an instance of ‘bad faith’. Davies argues that the RNTK takes precedence over many related issues and objections associated with a patient’s decision to implement such a resolution.1 Fundamentally, the RNTK gives patients power to protect themselves from subjective harm and to exercise their autonomy. In most cases, objectors of RNTK cite the negative impact on the patient’s state of health, which affects not only the patient but also those persons who would also be negatively affected by patient health outcomes. For the majority of objectors, patients have moral obligations to lessen the degree of burden on others, which refusal can initiate. However, Davies concludes, ‘…the burden placed on others is not sufficiently significant …. (shrink)

The Food and Drug Administration, as a matter of long-standing policy, does not inform the public of instances whereby applications for new drugs or new indications for existing drugs have been rejected by the agency or withdrawn from consideration, nor does it disclose the agency’s analyses of the data submitted with such applications. This lack of transparency is unjustified and prevents patients, researchers, and healthcare providers from gaining insight into why a drug’s application was not approved. The FDA’s policy is (...) particularly troubling in cases where the agency has found a currently marketed drug to be ineffective or unsafe for a newly proposed indication. Disclosure of the FDA’s findings in such cases would promote public health by encouraging healthcare providers to avoid prescribing drugs for unapproved uses that the agency has deemed to be potentially dangerous or ineffective. The FDA’s counterpart agencies in Europe and Canada have demonstrated the feasibility of disclosing information on rejected and withdrawn drug marketing applications. The FDA should follow suit and allow the American public to know when a drug is deemed unsafe or ineffective for a certain use. (shrink)

There is a common view in medical ethics that the patient's right to be informed entails, as well, a correlative right not to be informed, i.e., to waive one's right to information. This paper argues, from a consideration of the concept of autonomy as the foundation for rights, that there can be no such ‘right’ to refuse relevant information, and that the claims for such a right are inconsistent with both deontological and utilitarian ethics. Further, (...) the right to be informed is shown to be a mandatory right (though not a welfare right); persons are thus seen to have both a right and a duty to be informed. Finally, the consequences of this view are addressed: since the way in which we conceptualize our problems tends to determine the actions we take to resolve them, it is important properly to conceptualize patients' requests not to be informed. There may be many reasons for acting in accord with such a request, but it is a mistake to conceptualize one's act as ‘respecting a right possessed by persons’. Keywords: medical ethics, informed consent, autonomy, information-waivers, rights, obligations CiteULike Connotea Del.icio.us What's this? (shrink)

The idea of a right not to know (RNTK) emerged in the late 20th century, largely in response to the early incorporation of genetic testing into clinical care. While a few commentators took a more absolute view about the strength of the RNTK, most of the scholarship was openly sceptical of the concept, or at least was willing to acknowledge that the RNTK was defeasible.1 After two decades of relative quiet, it was surprising, then, that the RNTK reappeared (...) with a seemingly widespread consensus that it deserved to be treated as an absolute right. In response to the American College of Medical Genetics and Genomics recommendation2 to actively search for a limited set of high-value medical variants as a default (ie, without soliciting the patient’s preference to know or not know that information) many bioethics commentators came forward to endorse a strong RNTK.3 While ‘deliberate ignorance’ is a complicated moral and psychological concept,4 I was and remain sceptical of a strong RNTK in all cases, and largely support the novel arguments put forth by Ben Davies. But he makes two moves that deserve additional discussion and analysis. Specifically, I have concerns about conflating the provision of medical information with the separate decision about whether or not to act on …. (shrink)

Objective: To explore the experiences of people with a “terminal illness”, focusing on the patients’ perspective of euthanasia and assisted suicide.Method: A qualitative study using narrative interviews was conducted throughout the UK. The views of the 18 people who discussed euthanasia and assisted suicide were explored. These were drawn from a maximum variation sample, who said that they had a “terminal” illness, malignant or non-malignant.Results: That UK law should be changed to allow assisted suicide or voluntary euthanasia was felt strongly (...) by most people. Those who had seen others die were particularly convinced that this should be a right. Some had multiple reasons, including pain and anticipated pain, fear of indignity, loss of control and cognitive impairment. Those who did not want to be a burden also had other reasons for wanting euthanasia. Suicide was contemplated by a few, who would have preferred a change in the law to allow them to end their lives with medical help and in the company of family or friends. The few who opposed a change in UK law, or who felt ambivalent, focused on involuntary euthanasia, cited religious reasons or worried that new legislation might be open to abuse.Conclusion: Qualitative research conducted on people who know they are nearing death is an important addition to the international debate on euthanasia and assisted suicide. Those who had seen others die were particularly convinced that the law should be changed to allow assisted death. (shrink)

In recent years, the research participant’s family’s need, if not right, to know their disease risk has comprised a great deal of the genetic testing discourse. This most often arises in the context of clinical genetic tests for hereditary cancers, especially colorectal and breast cancer, and other genetic disorders where the presence of a genetic mutation greatly increases the likelihood of the disease’s manifestation. However, this discussion has not led to comprehensive or cohesive guidance for health care professionals (...) or patients. Indeed, various governmental and professional bodies run the gamut of possibilities, from no disclosure to family without the consent of the patient, to recognition that genetic risk information is important enough to the family to allow exception to traditional notions of confidentiality. (shrink)

There is significant controversy over whether patients have a ‘right not to know’ information relevant to their health. Some arguments for limiting such a right appeal to potential burdens on others that a patient’s avoidable ignorance might generate. This paper develops this argument by extending it to cases where refusal of relevant information may generate greater demands on a publicly funded healthcare system. In such cases, patients may have an ‘obligation to know’. However, we cannot infer (...) from the fact that a patient has an obligation to know that she does not also have a right not to know. The right not to know is held against medical professionals at a formal institutional level. We have reason to protect patients’ control over the information that they receive, even if in individual instances patients exercise this control in ways that violate obligations. (shrink)

This study compares the codes of media ethics adopted by the PCCPress Complaints Commission, the IFJInternational Federation of Journalists and the SPJSociety of Professional Journalists based on the claim that it is the public's right to know, and examines the origins of this concept. A new approach is presented here which falls between the liberal-democratic approach on the one hand and on the other, the extreme ultra-Orthodox approach that claims that it is the public's duty not to (...) class='Hi'>know. This new approach which indicates that it is the public's duty to know has evolved from the analysis of Jewish texts from Biblical times and from the study of events in Jewish community life throughout the world. This novel approach is likely to effect a change in the contents of broadcasts and in the boundaries of media ethics. (shrink)

Even the most ardent defenders of a legal right to freedom of the press are likely to regard this right as having limitations; but how precisely the right should be limited is a matter of considerable disagreement. This issue is at least partly moral in character: it concerns the moral acceptability of laws which regulate or protect the activities of members of the press. I propose here to address this moral issue, and to do so within the (...) broader framework of considering whether establishing a legal right to freedom of the press—regardless of how it might be limited—is justifiable on moral grounds. In pursuing this investigation, I will devote special attention to familiar claims about the relation between press rights on the one hand, and “the people's right to know” on the other. (shrink)

This text is about obtaining and sharing genetic information when there is a potential conflict of interests between patients and their families and relatives. The patient or, in this text, the “index-person,” is someone who is considering obtaining or already has obtained genetic information about herself through genetic testing.The index-person can have several reasons to take an interest in obtaining her genetic information. She may want to know if she has a genetic predisposition for a disorder in order to (...) take measures for preventing its development. Even if there are no preventive measures, as is the case with Huntington's disease, for instance, she may still want to know whether she has the mutation, in order to adjust her future plans. These interests that an individual may have in obtaining genetic information have been used to argue in favour of a right to know. (shrink)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to (...) the patient’s relatives who, without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (shrink)

Objectives: To compare attitudes of medical and law students toward informing a cancer patient about diagnosis and prognosis and to examine whether differences are related to different convictions about benefit or harm of information.Setting and design: Anonymous questionnaires were distributed to convenience samples of students at the University of Geneva containing four vignettes describing a cancer patient who wishes, or alternatively, who does not wish to be told the truth.Participants: One hundred and twenty seven medical students and 168 law students.Main (...) outcome measures: Five point Likert scale of responses to the vignettes ranging from “certainly inform” to “certainly not inform” the patient.Results: All medical students and 96% of law students favoured information about the diagnosis of cancer if the patient requests it. Seventy four per cent of medical students and 82% of law students favoured informing a cancer patient about his or her prognosis . Thirty five per cent of law students and 11.7% of medical students favoured telling about the diagnosis and 25.6% of law students and 7% of medical students favoured telling about the prognosis even if the patient had clearly expressed his wish not to be informed. Law students indicated significantly more often than medical students reasons to do with the patient’s good, legal obligations, and the physician’s obligation to tell the truth, and significantly less often than medical students that their attitude had been determined predominantly by respect for the autonomous choice of the patient.Conclusion: Differences in attitudes according to the type of case and the type of studies were related to convictions about the benefit or harm to the patient caused by being given information. The self reported reasons of future physicians and future lawyers are helpful when considering means to achieve a better acceptance of patients’ right to know and not to know. (shrink)

Background: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes. Methods: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology centers. The interviews were analyzed using thematic coding. Results: Parenting styles, the child's personality, and maturity are factors that have a great impact upon the (...) inclusion of children in their health care processes. Children reported the desire to be heard and involved, but they did not want to dominate the decision-making process. Ensuring trust in the parent–child and physician–patient relationships and respecting the child as the affected person were important values determining children's involvement. These two considerations were closely connected with the concern that fantasies are often worse than reality. Seeking children's compliance with treatment was a practical but critical reason for informing them about their health care. The urge to protect them from upsetting news sometimes resulted in their (partial) exclusion. Conclusions: The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities. (shrink)

As the basis for federal and state freedom of information laws, the legal idea of a public right to know has been a blessing. As the often-invoked moral justification for the press's right to publish, however, it is dangerous, because an unfettered right to know would result in restrictions on the press's right to determine what to publish. By acknowledging their moral responsibility to provide audiences with information based on their need to know, (...) journalists can avoid the hazards of arguing that an unrestricted public right to know is the foundation of press freedom. (shrink)

In “The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?,” Inmaculada de Melo‐Martín deconstructs the interests the right is supposed to protect. She argues that these interests are not set back or thwarted when one has no access to one's genetic origins. The basis of her argument is that we lack robust empirical evidence that donor‐conceived individuals suffer certain alleged harms, and that even when such harms are present, they do not (...) provide strong enough justification to ground the right.Indeed, the research on the needs, preferences, and well‐being of donor‐conceived individuals is scant. In fact, we lack robust empirical evidence regarding all aspects of donor conception. I argue, however, that the right to know one's genetic origins does not rest on empirical evidence. Some donor‐conceived individuals who are unable to know their genetic origins may suffer great harms. Others may suffer no harm at all. But all are treated wrongly when they are deprived of the ability to access information about their genetic origins. They are deprived of an important aspect of their autonomy: the liberty to choose what meaning they assign to the genetic components of their identity. (shrink)

It has been argued that the inherent risks of advance directives made by healthy people are disproportionate to the potential benefits, particularly if the directive is implementable in cases of reversible mental incapacity. This paper maintains that the evidence for such a position is lacking. Furthermore, respect for the principle of autonomy requires that individuals be permitted to make risky choices about their own lives as long as these do not impinge on others. Even though health professionals have an obligation (...) to try and ensure that patients have appropriate information about possible future treatment options, they cannot predict and describe every eventuality but nor can they disregard firm decisions knowingly made on the basis of incomplete information by competent adults. To attempt to do so would be to reinstate notions of medical paternalism which are contrary to current public expectations. (shrink)

Rapid advancement of technologies continues to revolutionize healthcare foundations and outlook. Technological progress in medicine are not only continuing to improve quality of individual life but also generally improving quality of healthcare services. As a matter of fact, the most significant change in healthcare systems was the shift from standardized, patronizing and rigid physician–patient relationship to more patient-focused, personalized and participatory practice. With this shift came increased attention to the assurance of patient’s right to autonomy. Therefore, this article aims (...) to discuss principal problematic aspects of patient’s right to autonomy hereby the patient’s role in the context of technologies and innovation. It is argued, that one of the effective ways to ensure patient’s right to autonomy is implementation of legal instruments, such as informed consent, advance directives and Ulysses contracts. However, this article also proposes, that with a potential of new technologies and artificial intelligence, these legal instruments need to be reconsidered and transformed in more efficient and eligible model, presenting information in more individualized, appealing and convenient manner. (shrink)

This paper examines the concept of ‘openness with patients’ from the stand-point of the limitations of biomedical ethics. Initially we review contemporary critiques of bioethics and, in particular, of principlism; we relate how other; somewhat neglected, forms of medical ethics can yield useful information and provide moral guidance.The main section of the paper then shows how a bioethical approach to openness misses the social context in our example, the viewpoints of patients; we present some of the increasing wealth of research (...) evidence which points towards patients wanting more information and a greater degree of openness.Finally we put forward that a principlist’s objection to active encouragement of openness might be based on the risk of infringing upon the ‘right not to know’. We reject this by arguing how rights can be trumped. (shrink)

A commentary on “The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?,” by Inmaculada de Melo‐Martin, and “Autonomous Choice and the Right to Know One's Genetic Origins,” by Vardit Ravitsky, bothin the January‐February 2014 issue.

Patients sometimes request procedures their doctors find morally objectionable. Do doctors have a right of conscientious refusal? I argue that conscientious refusal is justified only if the doctor's refusal does not make the patient worse off than she would have been had she gone to another doctor in the first place. From this approach I derive conclusions about the duty to refer and facilitate transfer, whether doctors may provide 'moral counseling,' whether doctors are obligated to provide objectionable procedures when (...) no other doctor is available, why the moral consensus among doctors seems relevant even though it does not determine whether something is morally acceptable, and whether doctors should stay out of fields whose standard procedures they find morally unacceptable. (shrink)

Having a decreased sense of security leads to unnecessary suffering and distress for patients. Establishing trust is critical for nurses to promote a patient's sense of security, consistent with trauma‐informed care. Research regarding nursing action, trust, and sense of security is wide‐ranging but fragmented. We used theory synthesis to organize the disparate existing knowledge into a testable middle‐range theory encompassing these concepts in hospitals. The resulting model illustrates how individuals are admitted to the hospital with some predisposition to trust or (...) mistrust the healthcare system and/or personnel. Patients encounter circumstances increasing their emotional and/or physical vulnerability to harm, leading to experiences of fear and anxiety. Without intervention, fear and anxiety lead to a decreased sense of security, increased distress, and suffering. Nurse action can ameliorate these effects by increasing a hospitalized person's sense of security or by promoting the development of interpersonal trust, also leading to an increased sense of security. Increased sense of security results in diminished anxiety and fear, and increased hopefulness, confidence, calm, sense of value, and sense of control. The consequences of a decreased sense of security are harmful to patients and nurses should know that they can intervene in ways that both increase interpersonal trust and sense of security. (shrink)

The people's right to know and press rights to gather and publish information remain dominant justifications for controversial media activities. Yet, the power of the media to set the agenda for public discourse in our country warrants a careful analysis of these rights, their corresponding responsibilities, and their moral limits. This article examines the right to know and press freedom from the perspective of their shared purpose, facilitation of informed decision making. This article also demonstrates moral (...) justification of limits on right to know and press freedom based on traditional ethics theories and media impact on public discourse. (shrink)

BackgroundPatient autonomy is a fundamental, yet challenging, principle of professional medical ethics. The idea that individual patients should have the freedom to make choices about their lives, including medical matters, has become increasingly prominent in current literature. However, this has not always been the case, especially in communist countries where paternalistic attitudes have been interwoven into all relationships including medical ones. Patients’ expectations and the role of the doctor in the patient-physician relationship are changing. Croatia, as a transitional country, is (...) currently undergoing this particular process.MethodsQualitative research was conducted by means of six focus group discussions held in the years 2012 and 2013 in Croatia. Focus groups were held separately with each of the following: first year and final year medical students, physicians engaged in medical ethics education, physicians practicing in a clinical hospital, family medicine residents and individuals representing patients with chronic disease. This research specifically addresses issues related to patient autonomy, in particular, the principles of truth telling, confidentiality, and informed consent. All focus group discussions were audio taped and then transcribed verbatim and systematized according to acknowledged qualitative analysis methods.Results and discussionPatient autonomy is much more than a simple notion defined as the patient’s right to make treatment decisions independently. It has to be understood in context of the broader socio-cultural setting. At present, both patients and medical doctors in Croatia are increasingly appreciating the importance of promoting the principle of autonomy in medical decision-making. However, the current views of medical students, physicians and patients reveal inconsistencies.Conclusions Knowing how to respect the various facets of patients’ autonomy should be part of physician’s professional duties, and also be reflected in his or her core clinical competencies. For this reason greater importance should be dedicated to patient autonomy issues in medical education in Croatia. (shrink)

The Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization plunged the United States into a devastating public health crisis. While we have some evidence of the deep harms that ab...

In lieu of an abstract, here is a brief excerpt of the content:These Things I BelieveA. M. ShuhamI am a health care professional who has worked in the field for two decades. I have been part of small miracles and heartbreaking events, which kept me up at night. Although I do not [End Page 120] provide direct patient care, my advanced education and expertise allows me to advise members of the health care team when difficult questions arise about the goals (...) of treatment, questions about competency and interpreting patient preferences. I believe my interest in the field was shaped by my family’s experience dealing with the challenges that come with terminal illness and advancing age. I am humbled to have been part of their journey as they faced death with dignity and grace.Living in a small community presents significant challenges that may never occur in a large urban setting. The team you work with knows your family or the names of your children because in their spare time they are the piano teacher or soccer coach for your children, friends that knew you growing up. This close knit atmosphere can be a blessing when things go well and unbearable when mistakes are made or professionals disagree, because you still interact with one another outside the context of your professional role and this is when moral distress begins.I began working with A. J. ten years ago to facilitate the completion of a health care directive. At the time A. J was beginning to show the signs of a neuro–muscular disease experienced by other members of the family. In early 2000 most directives were fairly straightforward with the option to choose artificial nutrition and hydration or not. A. J. very specifically checked “none.” Years went by living independently for A. J. but as most illnesses progress so did A. J’s, and admission to a health care institution became necessary. In many situations medically assisted nutrition and hydration would be indicated, but in this case the wishes of the patient were known in the form of a health care directive. The decision makers inability to honor the directive was the purpose for my involvement almost a decade after my initial work with A. J.No matter where you stand in the debate regarding medically assisted nutrition and hydration being burdensome or ordinary care, most people believe in the importance of a health care directive given the histories of Nancy Cruzan, Karen Quinlan and Terri Schiavo. My objective was to compile the legal information that would elucidate the patient preferences and help staff and the decision maker understand it was time to honor the directive given the advanced stage of disease. Numerous attempts were made with the surrogate and health care professionals to help them understand state statutes on health care directives supporting a patient’s right to chose. It became clear that some of the team seemed disinterested in my concerns or my responsibility as a professional, and I began to believe the difficulty was a failure on my part to communicate clearly.During that first year conversations and meetings were scheduled with the patients decision makers and they felt unable to make a decision and requested the entire family provide input. Although they understood A. J’s wishes, they felt everyone should be in agreement. In my experience when leaving decisions of this magnitude to a large extended family, communications deteriorate and little can be accomplished. Some members in the family held fundamental religious beliefs and thought a miracle could change the prognosis. While I believe as health care professionals we must respect individual religious beliefs and values, we are also morally obligated to advocate on behalf of our patients a fundamental principle I hold dear.The health care team was no more eager to address the issue than the family. I had produced specific state statutes regarding the health care directive of a previously competent person and even in light of this information, some individuals continued to believe the surrogates decision took precedence over the directive. This growing tension left me feeling angry and ineffective, questioning my role in the organization, while watching A. J. linger in a state not chosen. I believed I had failed... (shrink)

The isolation of the Netherlands as the only country in which voluntary euthanasia is legal is about to end. In October 2001 the Belgian Senate voted by almost a 2:1 margin to allow doctors to act on a patient's request for assistance in dying. The legislation is expected to pass the lower house shortly. That the Netherlands' closest neighbor is likely to be the next country to take this step should provide food for thought among those who have denounced voluntary (...) euthanasia in the Netherlands as rife with abuses. If that were really the case, why would the country that is better placed than all others to know what goes on in the Netherlands – not only because of its geographical proximity, but because most of its people are Dutch-speaking – be ready to copy the Dutch model? (shrink)

BackgroundHospitals face a disclosure dilemma when large-scale adverse events affect multiple patients and the chance of harm is extremely low. Understanding the perspectives of patients who have received disclosures following such events could help institutions develop communication plans that are commensurate with the perceived or real harm and scale of the event.MethodsA mailed survey was conducted in 2008 of 266 University of Washington Medical Center (UWMC) patients who received written disclosure in 2004 about a large-scale, low-harm/low-risk adverse event involving an (...) incomplete endoscope cleaning process. The survey measured patients’ satisfaction with this disclosure, their concerns about healthcare outcomes, and their recommendations for future communication, given similar circumstances.ResultsSurveys were received from 127 of 266 (48 percent) of eligible respondents; 98 percent thought that UWMC was right to inform them about this event, and mean satisfaction with the disclosure was 7.7 on a 0 to 10 scale. Of the 127 respondents, 64 percent were somewhat or very concerned that the endoscope cleaning problem might cause them health problems; 60 percent reported their impressions of UWMC’s honesty and integrity had increased; 31 percent said their perceptions of the quality of care had increased; 94 percent agreed that institutions should tell patients about any error in their care, even when the risk of harm was low, although 28 percent agreed that such notifications would make them anxious. Respondents who reported concern that the event could cause them health problems were less likely to be satisfied with the institution’s disclosure. Patients cited their right to know information material to their own health and healthcare as an important reason for disclosure.ConclusionRecipients of disclosure of a large-scale, low-harm/low-risk event overwhelmingly supported being told of the event and endorsed notification of patients for similar events in the future. Although informing patients may cause concern for some, institutions should ensure their disclosure policies and procedures reflect their patients’ preferences. (shrink)

Harris’ reply to our defence of the National Institute for Clinical Excellence’s (NICE) current cost-effectiveness procedures contains two further errors. First, he wrongly draws a conclusion from the fact that NICE does not and cannot evaluate all possible uses of healthcare resources at any one time and generally cannot know which National Health Service (NHS) activities would be displaced or which groups of patients would have to forgo health benefits: the inference is that no estimate is or can be (...) made by NICE of the benefits to be forgone. This is a non-sequitur. Second, he asserts that it is a flaw at the heart of the use of quality-adjusted life years (QALYs) as an outcome measure that comparisons between people need to be made. Such comparisons do indeed have to be made, but this is not a consequence of the choice of any particular outcome measure, be it the QALY or anything else. (shrink)

A growing number of jurisdictions hold that gamete donors must be identifiable to the children born with their eggs or sperm, on grounds that being able to know about one's genetic origins is a fundamental moral right. But the argument for that belief has not yet been adequately made.

The ability to differentiate between what is just and what is unjust may be considered as the precondition to demand one's own rights. Starting from this point, this research was carried out to describe the level of awareness of patients concerning their rights. The main hypothesis was: the higher the socioeconomic and cultural level of patients, the higher is their awareness of their rights. This research was conducted in one of the state hospitals in Turkey in 1998. It is a (...) descriptive study carried out on 128 inpatients in medical and surgical wards. The data were collected by a questionnaire, which included questions on the rights of patients and gave sample cases. The sample cases were designed by referring to the World Health Organization Declaration on the Promotion of Patients' Rights in Europe. Only 23% of the participants were able to recognize patient rights, while 32% could not; the majority (45%) were undecided in recognizing patient rights. The awareness scores were statistically significantly different for educational level categories (F = 5.84; p<0.001). A continuously declining trend was observed for patient rights awareness scores from the highest educational level to the lowest. This partly proves the hypothesis of the research. However, the awareness scores were not significantly different for the other background variables (p>0.05). Most strikingly, 38% of the patients had no idea about their diagnosis and 63% of those who had undergone surgery did not know why they had had the operation. (shrink)

After the initial surge in cases of coronavirus, the outbreak has been managed differently in different countries. In the USA, it has been managed in many different ways between states, cities and even counties. This disparity is slowly becoming more and more pronounced with the advent of antibody testing. Although many argue over the potential merits of antibody testing as an immunity passport to allow the economy to restart, there are other implications that stand at the heart of the bioethical (...) debate that are often overlooked. Particularly with COVID-19, there are many uncertainties and the discourse alone of antibodies presumes misinformation that may outweigh the epidemiological benefits of antibody testing. Although this paper does not seek to eliminate antibody testing, it does highlight the need for appropriate counselling both on a personal level with each patient but on a more global level. This moral standard of appropriate education is key to allowing the continued autonomy needed during this pandemic. (shrink)

“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in this paper (...) is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law. (shrink)

Questions of patient autonomy have formed an important part of ethical debate in medicine from at least the post-war period onwards. Although initially important as a counterweight to widespread medical paternalism, recent years have seen a reaction against a widely perceived ‘triumph of autonomy’. In particular, competent patients' refusal of life-saving or clearly beneficial treatment presents complex dilemmas for both healthcare professionals and ethicists. Discussion of the mechanism provided by the Israel Patient's Rights Act of 1996 for ethics committees to (...) override refusal of treatment by such patients has provided several examples in which it seems an obligation to benefit the patient can outweigh concerns regarding respect for their autonomy. However, such analyses as have been undertaken so far may be seen to omit important elements of the moral decision-making process that takes place even when the latter appears to ‘win out’. In addition to helping better prepare clinicians to meet such challenges in the future, a fuller appreciation of those elements that are present in justified cases of coercive treatment may enable them to arrive at a better understanding of what autonomy itself can mean in a medical context. (shrink)

OBJECTIVES: To analyse the attitudes of medical personnel towards terminally ill patients and their right to be fully informed. DESIGN: Self-administered questionnaire composed of 56 closed questions. SETTING: Three general hospitals and eleven health centres in Granada (Spain). The sample comprised 168 doctors and 207 nurses. RESULTS: A high percentage of medical personnel (24.1%) do not think that informing the terminally ill would help them face their illness with greater serenity. Eighty-four per cent think the patient's own home is (...) the best place to die: 8.9% of the subjects questioned state that the would not like to be informed of an incurable illness. CONCLUSION: In our opinion any information given should depend on the patient's personality, the stage of the illness and family circumstances. Our study confirms that a hospital is not the ideal environment for attending to the needs of the terminally ill and their families. (shrink)

Over the years a number of countries have abolished anonymous gamete donation and shifted toward open-identity policies. Donor-conceived children are said to have a fundamental “right to know” the identity of their donor. In this article, we trace the arguments that underlie this claim and question its implications. We argue that, given the status attributed to the right to know one's gamete donor, it would be discriminatory not to extend this right to naturally conceived children (...) with misattributed paternity. One way to facilitate this would be through routine paternity testing at birth. While this proposal is likely to raise concerns about the conflicting interests and rights of other people involved, we show that similar concerns apply to the context of open-identity gamete donation. Unless one can identify a rational basis for treating the two groups differently, one's stance toward both cases should be the same. (shrink)

The general thrust of Neil Levy's paper is that a certain amount of paternalism should be viewed as compatible with liberalism.1 I am not quite convinced that what he is defending is properly paternalism. In addition, I am not entirely sure what his proposal is. Here are a few comments about several points in the paper.1. A possibly small question is worth raising when Levy says, ‘That is, the state may not interfere with individuals’ actions, even to promote their own (...) conception of the good. This claim is typically justified on epistemic grounds: individuals are best placed to judge for themselves how to pursue their conception of the good.’But I don't think that this is quite the right picture, though admittedly, it has often been suggested by liberals. Still: if it's a matter of ‘epistemic’ grounds, then that implies that there is something out there to be known, so that the question is, how do we go about knowing it? But this way of putting it is misleading. For liberalism says that whenever anybody, B, other than the individual we are considering, say A, claims that what is good for A is something ‘out there’—something that can strongly contradict what A thinks for his own case—then that outsider has no authority to override A's preference. This isn't epistemic—it's a moral position.If we were to talk of ‘epistemic’ here, presumably what is known in this case is how the individual …. (shrink)