This paper is an analysis of the limits of family authority to refuse life saving treatment for a family member (in the Chinese medical context). Family consent has long been praised and practiced in many non‐Western cultural settings such as China and Japan. In contrast, the controversy of family refusal remains less examined despite its prevalence in low‐income and middle‐income countries. In this paper, we investigate family refusal in medical emergencies through a combination (...) of legal, empirical and ethical approaches, which is highly relevant to the ongoing discussion about the place of informed consent in non‐Western cultures. We first provide an overview of the Chinese legislation concerning informed consent to show the significance of family values in the context of medical decision‐making and demonstrate the lack of legal support to override family refusal. Next, we present the findings of a vignette question that investigated how 11,771 medical professionals and 2,944 patients in China responded to the family refusal of emergency treatment for an unconscious patient. In our analysis of these results, we employ ethical reasoning to question the legitimacy of family refusal of life‐sustaining emergency treatment for temporarily incompetent patients. Last, we examine some practical obstacles encountered by medical professionals wishing to override family refusal to give context to the discussion. (shrink)

A large part of the debate around the right to refuse life-prolonging treatment of anorexia nervosa sufferers centers on the issue of competence. Whether or not the anorexic should be allowed to refuse life-saving treatment does not depend solely or primarily on competence. It also depends on whether the anorexic’s suffering is bearable or tractable, and on the degree of involvement of the family in the therapeutic process. Anorexics could be competent to refuse lifesaving treatment (Giordano 2008). However, the (...) anorexic’s refusal of life-saving treatment should not be respected purely because it is a competent decision. In fact, anorexia has two characteristics that weaken the strength of the principle .. (shrink)

Thousands of U.S. parents choose to refuse or delay the administration of selected vaccines to their children each year, and some choose not to vaccinate their children at all. While most physicians continue to provide care to these families over time, using each visit as an opportunity to educate and encourage vaccination, an increasing number of physicians are choosing to dismiss these families from their practice unless they agree to vaccinate their children. This paper will examine this emerging trend along (...) with the reasons given by those who advocate such an approach. I will argue that the strategy of refusing to allow families into a clinic unless they agree to vaccinate their children is misguided, and the arguments for doing so fail to stand up to close scrutiny. Such a strategy does not benefit the child or the health of the community, and may have a negative impact on both. Furthermore, some of the arguments in support of dismissal policies ignore the importance of professional obligation and appear to favor self-interest over the interest of the patient. (shrink)

Refusing treatment for potentially curable childhood cancers engenders much discussion and debate. I present a case in which the competent parents of a young Amish child with acute myeloid leukemia deferred authority for decision making to the child’s maternal grandfather, who was vocal in his opposition to treatment. I analyze three related concerns that distinguish this case from other accounts of refused treatment.First, I place deference to grandparents as decision makers in the context of surrogate decision making more generally.Second, the (...) maternal grandfather’s ardent refusal of treatment and his rationale appeared to be inconsistent with the beliefs expressed by other family members and by members of the same Amish community, leading members of the medical team to question whether refusal of treatment should be treated differently when it appears to be based on the idiosyncratic beliefs of an individual rather than on community-wide values.Third, the medical team perceived tension and dissension between the nonverbal behavior of some family members and the verbal statements made by the maternal grandfather, leading the team to question the parents’ true wishes and debate how to weigh nonverbal and indirect forms of communication.Finally, building upon the conclusions of these queries, I explore whether, if the child’s prognosis was less favorable or if he were to relapse later, the maternal grandfather should have been permitted to drive a decision to refuse further treatment. (shrink)

Parents frequently attempt to shield their children from distressing prognostic information. Pediatric oncology providers sometimes follow parental request for non-disclosure of prognostic information to children, invoking what we call the stability of the family argument. They believe that if they inform the child about terminal prognosis despite parental wishes, cohesion and family structure will be severely hampered. In this paper, we argue against parental request for non-disclosure. Firstly, we present the stability of the family argument in more (...) detail. We, then, set out the (conceptual, legal, systemic) entitativity of the family and the kind of value the stability of the family argument assumes, before we set on to critically evaluate the argument. Our analysis shows that disclosure of prognostic information to children does not necessarily destabilize the family to a greater extent than non-disclosure. In fact, a systemic perspective suggests that mediated disclosure is more likely to result in a (long-term) stability of the family than non-disclosure. It is in the interest of the family to resist the initial aversive reaction to delivering bad news. In the final part, we draw a set of recommendations on how to facilitate decision-making in face of parental request for non-disclosure. (shrink)

When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify key (...) questions. I outline and defend a new decision-making tool that includes three parts: identifying the nature of the disagreement, checklists for key elements of the HP and ZPD, and a “think list” of specific questions designed to enhance use of the HP and ZPD in clinical decision making. These tools together will assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution. (shrink)

A recent American Academy of Pediatrics (AAP) clinical report states that it is an acceptable option for pediatric care clinicians to dismiss families who refuse vaccines. This is a clear shift in guidance from the AAP, which previously advised clinicians to “endeavor not to discharge” patients solely because of parental vaccine refusal. While this new policy might be interpreted as encouraging or recommending dismissal of vaccine-refusing families, it instead expresses tolerance for diverse professional approaches. This is unlike the earlier (...) guidance, which promoted a unified response to vaccine refusal. In fact, the resolution (which was presented at the AAP’s Annual Leadership Forum) that led to this clinical report also calls on the AAP “to continue to support pediatricians who continue to provide health care to children of parents who refuse to immunize their children.” However, the shift toward embracing dismissal as an acceptable response to vaccine refusal may erode professional solidarity. Pediatricians are clearly divided on this question; most do not dismiss vaccine-refusing families. By declaring that dismissal is an acceptable option, the AAP has sanctioned a practice that may be unfair to the many clinicians who do not dismiss these families. Clinicians who adopt a policy of dismissal toward families who refuse vaccines might impose burdens on colleagues who remain willing to offer care to those families, and their actions might show insufficient commitment to the efforts of their profession to promote health for all children. (shrink)

There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID19 unvaccinated family member, or use of a non-standard blood supplier. We address the ethical challenges posed by these (...) issues. We describe the current screening and safety processes for standard blood donation and explore the importance of donor anonymity and challenges with directed donation and non-standard blood suppliers. We present an ethical framework using the Best Interest Standard, the Zone of Parental Discretion, and the Harm Principle when considering these refusals. Finally, we provide recommendations for how to approach these requests as they potentially become more commonplace in pediatrics. (shrink)

There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID-19 unvaccinated family member, or use of a non-standard blood supplier. We address the ethical challenges posed by these (...) issues. We describe the current screening and safety processes for standard blood donation and explore the importance of donor anonymity and challenges with directed donation and non-standard blood suppliers. We present an ethical framework using the Best Interest Standard, the Zone of Parental Discretion, and the Harm Principle when considering these refusals. Finally, we provide recommendations for how to approach these requests as they potentially become more commonplace in pediatrics. (shrink)

Food refusal occurs for a variety of reasons. It may be used as a political tool, as a method of exercising control over others, at either the individual, family or societal level, or as a method of self-harm, and occasionally it indicates possible mental illness. This article examines the motivation behind hunger strikes in prisoners. It describes the psychiatrist's role in assessment and management of prisoners by referring to case examples. The paper discusses the assessment of an individual's (...) competence to commit suicide by starvation, legal restraints to intervention, practical difficulties and associated ethical dilemmas. Anecdotal evidence suggests that most prisoners who refuse food are motivated by the desire to achieve an end rather than killing themselves, and that hunger-strike secondary to mental illness is uncommon. Although rarely required, the psychiatrist may have an important contribution to make in the management of practical and ethical difficulties. (shrink)

Many families refuse to consent to donation from their deceased relatives or over-rule the consent given before death by the patient, but giving families more information about the potential recipients of organs could reduce refusal rates. In this paper, we analyse arguments for and against doing so, and conclude that this strategy should be attempted. While it would be impractical and possibly unethical to give details of actual potential recipients, generic, realistic information about the people who could benefit from (...) organs should be provided to families before they make a decision about donation or attempt to over-rule it. (shrink)

An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person’s worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family’s collective Indian Hindu worldview and end-of-life beliefs, (...) values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses’ well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society’s views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents’ right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm. (shrink)

The wishes of registered organ donors are regularly set aside when family members object to donation. This genuine overruling of the wishes of the deceased raises difficult ethical questions. A successful argument for providing the family with a veto must (a) provide reason to disregard the wishes of the dead, and (b) establish why the family should be allowed to decide. One branch of justification seeks to reconcile the family veto with important ideas about respecting property (...) rights, preserving autonomy, and preventing harm. These arguments are ultimately unsuccessful. Another branch of arguments is consequentialist, pointing out the negative consequences of removing the veto. Whether construed as concerning family distress or as a potential drop in the organs available, these arguments are unsuccessful; the first fails to recognize the tremendous distress associated with waiting for an organ, while the second has little supporting evidence. A final section considers and rejects whether combining some of the arguments just examined could justify the family veto. We should thus remove the family veto in organ donation. (shrink)

In the Netherlands, in 1995 approximately 9700 people explicitly requested euthanasia or assisted suicide, and EAS was performed approximately 3600 times. The most important reasons for not performing EAS when requested by a patient were that the patient died before EAS was performed, or that the physician refused the request.

Institutions, if unjust, ought to be reformed or even abolished. This radical Rawlsian thought leads to the question of whether the family ought to be abolished, given its negative impact on the very possibility of delivering equality of life chances. In this article, we address questions regarding the justice of the family, and of marriage, and reflect on rights, equality, and the provision of social goods by institutions. There is a temptation to justify our social institutions in terms (...) which highlight their universal accessibility and benefits. But we may best understand the claim of some of our most important institutions where we recognize that they are forms of social good which may legitimately benefit some without having to benefit all. Their abolition is unjustified where there is sufficient value in them given our collective needs that it is unreasonable for some to refuse the means to maintain and promote these goods. (shrink)

This paper sets out to unpack the pragmatic structure of refusal—its illocutionary nature, success conditions, and normative effects. I argue that our ordinary concept of refusal captures a whole family of illocutions, comprising acts such as rejecting, declining, and the like, which share the property of being ‘negative second-turn illocutions’. Only _proper refusals_ (i.e. negative replies to permission requests), I submit, require speaker authority. I construe the ‘refusal family’ as a subclass of the directives-commissives intersection. (...) After defending my view against a number of potential objections, I highlight how a theoretically grounded analysis of refusal is not only of intrinsic value, but may also have significant moral and legal implications. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the ‘AP‐physician‐family‐relationship’ and the dominant role Chinese families play in medical decision‐making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese writers (...) from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives ‘weak’ family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re‐interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its ‘parens patriae’ power to defend the defenseless in society and the integrity of the medical profession. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the 'AP-physician-family-relationship' and the dominant role Chinese families play in medical decision-making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese writers (...) from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives 'weak' family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re-interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its 'parens patriae' power to defend the defenseless in society and the integrity of the medical profession. (shrink)

The annual UK potential donor audit captures families’ reasons for not consenting to donation of their deceased family members’ organs . Given that many families’ refusals and vetoes are based on false beliefs, cognitive bias and misunderstanding, it is incumbent upon doctors, nurses and transplant coordinators to invest sufficient time to facilitate informed consent or authorization. While such families are distressed, organ donation rates could be substantially improved if they were made aware of any mistaken beliefs, using recently suggested (...) criteria for the ethical use of persuasion . This article examines some of the reasons for refusal of donation and suggests ways to help families make better decisions. It emerges that the use of persuasion is ethically essential in order to prevent families making decisions that they may come to regret. (shrink)

Families play an essential role in deceased organ procurement. As the person cannot directly communicate his or her wishes regarding donation, the family is often the only source of information regarding consent or refusal. We provide a systematic description and analysis of the different roles the family can play, and actions the family can take, in the organ procurement process across different jurisdictions and consent systems. First, families can inform or update healthcare professionals about a person’s (...) donation wishes. Second, families can authorize organ procurement in the absence of deceased’s preferences and the default is not to remove organs, and oppose donation where there is no evidence of preference but the default is to presume consent; in both cases, the decision could be based on their own wishes or what they think the deceased would have wanted. Finally, families can overrule the known wishes of the deceased, which can mean preventing donation, or permitting donation when the deceased refused it. We propose a schema of 4 levels on which to map these possible family roles: no role, witness, surrogate, and full decisional authority. We conclude by mapping different jurisdictions onto this schema to provide a more comprehensive understanding of the consent system for organ donation and some important nuances about the role of families. This classificatory model aims to account for the majority of the world’s consent systems. It provides conceptual and methodological guidance that can be useful to researchers, professionals, and policymakers involved in organ procurement. (shrink)

This book acknowledges and highlights the moral excellence embedded in black queer practices of family. Taking the lives, narratives, and creative explorations of black queer people seriously, Thelathia Nikki Young brings readers on a journey of new, queer ethical methods that include confrontation, resistance, and imagination. Young asserts that family and its surrounding norms are both microcosms of and foundations for human relationships. She discusses how black queer people are moral subjects whose ethical reflection, lived experience, and embodied (...) action demonstrate valuable moral agency for those of us thinking about liberating and life-giving ways to enact “family.” Young posits that black queer people enact moral agency in ways that ought to be understood qua moral agency. Refusing to recognize the examples from this (and any other) community, Young argues, denies us all the learning and moral growth that come from connecting with diverse human experiences. This book investigates how acknowledging and critically engaging with the moral agency within marginalized subjectivities allow us to consider and bear witness to the moral potential in us all. (shrink)

The “family rule” paper by Dr Foreman proposes a way of resolving the present uncertainty about medical law on children's consent and refusal. This commentary reviews how doctors' decisions are already well protected by English law and respected by the courts. The “family rule” appears to be likely only to complicate the already diffuse law on parental consent, and to weaken further the competent minor's position in cases of uncertainty and disagreement. It leaves the difficult questions about (...) defining and assessing children's competence unanswered. This commentary suggests that these questions would be better resolved through professionally determined standards of good practice that respect children and parents, rather than through rules or laws. (shrink)

This qualitative research study with a content analysis approach aimed to explore families’ experiences of an organ donation request after brain death. Data were collected through 38 unstructured and in-depth interviews with 14 consenting families and 12 who declined to donate organs. A purposeful sampling process began in October 2009 and ended in October 2010. Data analysis reached 10 categories and two major themes were listed as: 1) serenity in eternal freedom; and 2) resentful grief. The central themes were peace (...) and honor versus doubt and regret. The findings indicated that the families faced with an organ donation request of a brain-dead loved one experienced a lasting effect long after the patient's demise regardless of their decision to donate or refusal to donate. In conclusion, this study highlights the importance of family support and follow-up in an efficient healthcare system aimed at developing trust with the families and providing comfort during and after the final decision. (shrink)

Vaccine refusal has increasingly been the focus of public health concern. Rates of children who are up to date on vaccines have declined in recent years, and vaccine refusal has been implicated in disease outbreaks. Most research on children who are not fully immunized identifies white affluent mothers as most likely to opt out by choice and Black mothers as more likely to face structural barriers that limit access to vaccines for their children. In this paper, we analyze (...) social media posts and online discussions among Black mothers to better understand their concerns about vaccines. Unlike white women who reject vaccines as a personal choice, Black mothers express unique concerns about the role of the state in their lives. Specifically, some Black mothers using social media view vaccines as a white technology and claim that white women have greater freedom in opting out of vaccines without the same risks to their families. They describe efforts to strategize interactions with pediatricians and other healthcare providers who can report them to social service agencies or block access to welfare and nutritional benefits for their families if they refuse vaccines. Black women’s experiences with structural gendered racism in interactions with healthcare and education systems shape vaccine decisions and should be taken seriously. (shrink)

In December 2004, at the age of 91, my father was told that his congestive heart failure had worsened and that his kidneys were functioning poorly. At best, the prognosis was that he had perhaps another year; at 86, my father had had a succession of three heart attacks before having surgery to place a stent in his coronary artery. The cardiologist who treated him then said he would get five or six good years from the stent, for which my (...) father was grateful. Now, he believed that his time had come, and he wanted to see his grandchildren one last time.My family and I quickly made arrangements to travel 1,200 miles to make this last visit. We arrived late in the evening, and my mother answered the doorbell with the... (shrink)

Refusing consent to organ donation remains unacceptably high, and improving consent rates from family or next-of-kin is an important step to procuring more organs for solid organ transplantation in countries where this approval is sought. We have thus far failed to translate fully our limited understanding of why families refuse permission into successful strategies targeting consent in the setting of deceased organ donation, primarily because our interventions fail to target underlying cognitive obstacles. Novel interventions to overcome these hurdles, incorporating (...) an understanding of cognitive psychology and behavioral change therapy, may be beneficial. One potential intervention is to use the concept of nudge theory, where decision-making is influenced by encouraging positive reinforcement and indirect suggestion. Purposefully nudging families to given consent for organ donation by understanding, and then overcoming, their inherent cognitive biases is novel but also controversial. This article explores the roles of relatives in decisions about organ donation, how nudge theory translates to organ donation and discusses the arguments for and against its application. (shrink)

Several recent articles raise an issue long unaddressed in the medical literature: physician compliance with patient or family requests for futile or ineffectice therapy. Although they agree philosophically that such treatment ought not be given, most physicians have followed the course described by Stanley Fiel, in which a young patient dying of cystic fibrosis was accepted “for evaluation” by a transplant center even though he has already passed the threshold of viability as a candidate for a heart-lung transplant. Dr. (...) Fiel reported this action was taken not in the hope of doing the transplant but so that the family could assure themselves they had done “everything possible.” The patient, after a long and stressful cross-country flight, arrived at the hospital in respiratory failure. He died soon thereafter far from home and familiar surroundings. (shrink)

La mythologie est une source d’inspiration constante pour la psychanalyse, dont l’une des pierres de touche réfère à la primauté accordée à la sexualité et à la vie pulsionnelle. Partant du constat surprenant de la mise sous silence de la légende de Tirésias dans la littérature psychanalytique, mythe évoquant une plus grande intensité de la jouissance sexuelle chez la femme, cet article se veut une invitation à la déconstruction du refus du féminin freudien (roc du biologique) à la lumière de (...) ce que nous nommons : le complexe de Tirésias. Au sein du nécessaire dialogue entre théorie et clinique, cette perspective accordant toute sa place à l’activité fantasmatique inconsciente à la lumière d’une acception intersubjective de la genèse pulsionnelle, contribue selon nous à limiter le risque contre-transférentiel d’une survalorisation du courant maternel au détriment du féminin érotique. (shrink)

The laws and ethical guidelines governing decision making for incompetent patients evolved from controversies in which family members refused life-sustaining interventions. These cases led to a consensus that advance directives to limit interventions should be respected and that a surrogate designated by the patient or specified by statute could refuse interventions, even when other relatives disagreed. Surrogate decision-making statutes and ethical principles about respect for delegated autonomy promote an active role for family members or other surrogates in medical (...) decisions for incompetent patients. Inviting surrogates to participate actively in medical decisions recognizes the importance of the patient's personal community and assures that decisions will reflect the patient's own preferences and values.The standard approach to decisions for incompetent adults gives advance directives priority over a surrogate's substituted judgment, which in turn has priority over assessments of the patient's best interest. A patient may express advance directives by appointing a proxy, stating specific preferences, or articulating general values. We use case examples to illustrate the limitations of all three types of advance directives. (shrink)

Dealing with the continuously increasing rates of families wanting to either significantly delay or completely postpone their infant's vaccines has created an alarmingly untenable dilemma for the general pediatricians dealing with these families on a daily basis. Pediatricians must decide whether to continue to provide substandard care by foregoing many or most of the infant's highly recommended protective vaccines, or whether to dismiss from the practice the family who refuses vaccines. Much has been written about why they should retain (...) these families, but this paper will discuss some reasonable rationales as to why nearly 40% of pediatricians choose dismissal of these families. (shrink)

The laws and ethical guidelines governing decision making for incompetent patients evolved from controversies in which family members refused life-sustaining interventions. These cases led to a consensus that advance directives to limit interventions should be respected and that a surrogate designated by the patient or specified by statute could refuse interventions, even when other relatives disagreed. Surrogate decision-making statutes and ethical principles about respect for delegated autonomy promote an active role for family members or other surrogates in medical (...) decisions for incompetent patients. Inviting surrogates to participate actively in medical decisions recognizes the importance of the patient's personal community and assures that decisions will reflect the patient's own preferences and values.The standard approach to decisions for incompetent adults gives advance directives priority over a surrogate's substituted judgment, which in turn has priority over assessments of the patient's best interest. A patient may express advance directives by appointing a proxy, stating specific preferences, or articulating general values. We use case examples to illustrate the limitations of all three types of advance directives. (shrink)

Marshall and O’Leary’s thoughtful response to our article suggests that dismissal policies are ethically justifiable because they might induce parents to immunize their children. This outcome is conceivable, but we have only anecdotes about how often it occurs. Such evidence became the thin reed on which the American Academy of Pediatrics rested its new policy of tolerating the practice of dismissing vaccine-hesitant parents. It seems likely that relatively few parents would agree to vaccinate because they were threatened with dismissal. Other (...) heavy-handed interventions have failed to move most such parents. When Washington state made nonmedical exemptions more difficult to obtain, nearly two-thirds of vaccine refusers were unmoved and their children remained unvaccinated. Even if dismissal threats led some parents to accept vaccines, this alone would not justify a dismissal policy. The benefits would still have to be weighed against the risks of dismissing those families who do not change their minds. (shrink)

Surgical “buy-in” is an “informal contract between surgeon and patient in which the patient not only consents to the operative procedure but commits to the post-operative surgical care anticipated by the surgeon.”1 Surgeons routinely assume that patients wish to undergo treatment for operative complications so that the overall treatment course is “successful,” as in the treatment of a post-operative infection. This article examines occasions when patients buy-in to a treatment course that carries risk of complication, yet refuse treatment when complications (...) arise. We coin this counter-phenomenon “cashing-out.” Cashing-out may elicit negative feelings among careproviders. We question why patients or families may wish to cash-out. One reason may be the changing epistemological position of patients as they experience a complication. The shift from the hypothetical discussion of complications during the initial informed-consent process to the experience of having a complication represents new knowledge. Patients and families may use this knowledge as the basis to revoke consent for some or all of the remaining treatment course. This article seeks to understand cashing-out in terms of the patients’ experiences. We hope to prompt recognition of this phenomenon across medical contexts and to provide impetus for further work to understand why patients may wish to cash-out. (shrink)

The MedStar Washington Hospital Center clinical ethics team became involved in a case when the family requested the posthumous removal of a patient’s ovaries for future reproductive use. This case presents a novel question for clinical ethicists, since the technology for posthumous female reproduction is still in development. In the bioethics literature, the standard position is to refuse to comply with such a request, unless there is explicit consent or evidence of explicit conversations that demonstrate the deceased would have (...) wanted this option pursued. Ms D’s case, we suggest, offers an exception to this default position; complying with the family’s request could have been ethically permissible in this case, had it been medically feasible. (shrink)

Patient families sometimes ask health professionals, ‘What would you do if this were your family member?’ The purpose of this paper is to examine appropriate responses to this Question. Health professionals may say, ‘It all depends on the patient's wishes’, or ‘I don't know what is best, because my family is different from yours in many ways’. Some may believe that the most favourable course of action is the same regardless of who the patient is and explain this (...) to the patient's family, while others may refuse to answer the Question saying it is personal, or argue that such a Question should neither be asked nor answered because it is unreasonable and unprofessional to do so. We believe that, in principle, health professionals should give an honest answer as to what they would do if the patient was their family member, recognising and empathising with the fact that the patient's family is in a difficult and vulnerable position, and that their circumstances forced them to ask such a Question. Moreover, personal and emotional views of health professionals regarding treatment options may help the patient's family make important decisions. An honest answer will help strengthen the trusting relationship between health professionals and the patient's family and support their decision-making. (shrink)

What should Japanese doctors do when asked by a patient for active voluntary euthanasia, when the family wants aggressive treatment to continue? In this paper, we present the results of a questionnaire survey of 366 Japanese doctors, who were asked how they would act in a hypothetical situation of this kind, and how they would justify their decision, 23% of respondents said they would act on the patient’s wishes, and provided reasons for their view; 54% said they would not (...) practice VE, either because they were opposed to VE as such, or because they believed that the wishes of the patient’s family should be respected.Analysis of these responses yielded the following results: Doctors willing to respect the patient’s wishes defended their decision by highlighting the significance of patient autonomy and the patient’s exclusive ownership of his or her life; doctors unwilling to act on the patient’s wishes fell into two broad categories — those who based their reasoning on the family’s objections, and those who provided other reasons for refusing VE. Respondents who said they would not comply with the patient’s wishes because of family objections provided the following kinds of rationale: doctors have serious responsibilities not only to the patient, but also to the patient’s family; the importance of the family-doctor relationship; fear of lawsuits for murder and related criminal offences; the need for agreement among all those affected by the decision, and the belief that the patient’s life is not his or her own, but the family’s. Respondents who gave non-family centred reasons for not complying with the patient’s wishes pointed to values such as the sanctity of life, or the importance of a natural deathIn the remainder of this paper, we discuss the implications of a family-centred approach to VE. (shrink)

This paper examines the ethico-legal problems regarding the right to refuse treatment in Turkey's healthcare system. We discuss these problems in the light of a recent case that was directly reported to us. We first summarise the experience of a chronically dependent patient (as recounted by her daughter) and her family during their efforts to refuse treatment and receive palliative care only. This is followed by a summary of the legal framework governing the limits of the right to refuse (...) treatment in Turkey. With the help of this background information on the legal framework, we re-examine the ethico-legal aspects of the case and explain the underlying reasons for the problems the family and the patient experienced. Finally, we conclude that Turkey's legal framework relating to the right to refuse treatment needs to be clarified and amended in accordance with international conventions and fundamental human rights. (shrink)

Two of the most poignant decisions in pediatrics concern disagreements between physicians and families over imperiled newborns. When can the family demand more life-sustaining treatment than physicians want to provide? When can it properly ask for less? The author looks at these questions from the point of view of decision theory, and first argues that insofar as the family acts in the child’s best interest, its choices cannot be constrained, and that the maximax and minimax strategies are equally (...) in the child’s best interest. He then proposes a guideline according to which the family can demand LST if it is physiologically possible to preserve a life the child can be expected to welcome, and refuse such treatment if it causes suffering that is “more than can be borne” even if an uncompromised life is expected to emerge. (shrink)

Healthcare systems around the world are struggling to maintain a sufficient workforce to provide adequate care during the COVID-19 pandemic. Staffing problems have been exacerbated by healthcare workers refusing to work out of concern for their families. I sketch a deontological framework for assessing when it is morally permissible for HCWs to abstain from work to protect their families from infection and when it is a dereliction of duty to patients. I argue that it is morally permissible for HCWs to (...) abstain from work when their duty to treat is outweighed by the combined risks and burdens of that work. For HCWs who live with their families, the obligation to protect one’s family from infection contributes significantly to those burdens. There are, however, a range of complicating factors including the strength of duty to treat which varies according to the HCW’s role, the vulnerability of family members to the disease, the willingness of family members to risk infection and the resources available to the HCW to protect their family. In many cases, HCWs in ‘frontline’ roles with a weak duty to treat and families at home will be morally permitted to abstain from work given the risks posed by COVID-19; therefore, society should provide additional incentives to maintain sufficient staff in these roles. (shrink)

True stories about people who triumphed over seemingly impossible medical diagnoses using untraditional, inventive therapies and perseverance--and about what scientists are discovering on the psychology of healing and the mind-body connection--from the author of theNew York TimesMagazinearticle about her own son, "The Boy with the Thorn in his Joints," which led to this book about other families.

Critics sometimes claim that Catholic moral principles unreasonably oblige patients to adopt life-preserving medical treatments “at all costs,” even when the treatments are excessively burdensome or futile and when their adoption may badly disadvantage patients’ family members or caregivers. The author argues that this is a mischaracterization. Because of obligations arising from our relationships, not only is it sometimes licit to refuse lifesustaining medical care, but we sometimes have a duty to refuse it. This is the case when the (...) treatments are morally extraordinary and when adopting them would unfairly disadvantage someone for whom we have responsibility. The author argues that this conclusion is not inconsistent with the duty we have to properly care for our own lives or with moral principles prohibiting self-killing. National Catholic Bioethics Quarterly 12.4 (Winter 2012): 621–630. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Bittersweet Score:A Father’s Account of His Family’s 20-Year Journey After a Pediatric Brain Tumor DiagnosisChristopher RileyI hadn’t seen him for 20 years, not since the day he drilled a hole in Peter’s head and left the stainless steel drill and bloody bit on the bedside table. He figured prominently in the story I often told of that day when he, a doctor in training, [End Page 3] (...) informed my wife Kathy and me that, “Wow,” our five-year-old son had “an impressive tumor” in his brain. He announced it with the admiration I reserve for a touchdown pass or stunning sunset. Since that day, he had become a venerable physician. Back then he was the resident who met us in the ER after our pediatrician told us that the MRI of Peter’s brain was “not normal,” that “there might be a growth.” As if there might not be. I imagined that Peter’s brain might simply have an unusual shape, or that the scan revealed some undiscovered fracture and the authorities only wanted to lock me up and all with my son would be well. The thrilled young doctor slew those hopes with an ice pick: “Wow, that’s an impressive tumor.” I said, “That’s the first time anyone has used the word tumor.” The doctor appeared mortified and started over.Now 20 years later we found ourselves at the same party and I felt a compulsion to introduce myself, remind him we’d met that day in 1993, and tell him what had become of Peter and his family in the decades since he’d made that mortifying mistake, one I hoped had become for him a defining moment. To my disappointment, he didn’t seem to remember.Peter was my red-haired boy. Fearless and whip smart, he told a stream of knock-knock jokes and performed dance routines choreographed by his 8-year-old sister Rachel. Six months of headaches, vomiting and clumsy falls led to discovery of the tumor. When I phoned my parents with the news, I couldn’t speak the words, words that felt as if they spelled my boy’s doom. My body refused to pronounce them.The war for Peter’s life began with surgery. I sat with Kathy in the surgical waiting area, fearing every minute that I would see the surgeon approaching with his shoulders slumped in mortal defeat. I learned during those hours that fear of your child’s death is a physical pain, a constriction in the chest, a suffocation. At the end of that wait, the surgeon told us the tumor was out and Peter had survived. The pathology indicated the tumor was a medulloblastoma. Without additional treatment, including radiation, it was certain to come back. Kathy’s knees buckled. Having just endured one life-and-death battle, we were plunged into another. To complicate matters, Peter wasn’t waking from surgery. Even after the anesthesia wore off, Peter remained groggy, unable to move or focus his eyes.Through the following days, Peter failed to rouse or speak. Sores formed at the back of his neck where his unswallowed saliva pooled. Neurologists doubted he knew us. His doctors hoped Peter would recover but it was possible he would remain as he was indefinitely. As I sat holding his useless hand, watching his useless body, I thought I’d never loved him as much as I did now.Peter’s doctors presented two treatment options. The first consisted of relatively high doses of daily radiation, the most effective known method for preventing the return of the cancer. But radiation wasn’t good for young brains. It “shaved IQ points,” they said in wild understatement. So they offered a second, experimental option, one that reduced radiation by a third and added months of chemotherapy. The doctors hoped this new regimen would be as effective as the old but cause less cognitive damage. They asked us to choose. It seemed impossible. We gathered the scant available data. We weighed the risks. We prayed. We took a leap. Without asking him, we made a decision for Peter we knew... (shrink)

This essay argues that the Chinese Mental Health Act of 2013 is overly individualistic and fails to give proper moral weight to the role of Chinese families in directing the process of decision-making for hospitalizing and treating the mentally ill patients. We present three types of reactions within the medical community to the Act, each illustrated with a case and discussion. In the first two types of cases, we argue that these reactions are problematic either because they comply with the (...) law but undermine the patient’s interests by refusing the family’s request to have the patient hospitalized, or violate the law by hospitalizing patients in response to the real concerns of their families. In the third type of situation, psychiatrists inappropriately encourage families to produce evidence of the patient’s behavior that is harmful to self or others in order legally to commit the patient. Each of these problems, we conclude, should be tackled by supplementing Article 30 of the Act with the stipulation that a psychiatrist may authorize the involuntary hospitalization of a patient, who is not at risk of causing physical harm to self or others, with the consent of all major family members. Drawing on the deeply culturally embedded moral traditions of Confucian medical familism, this proposal would facilitate the proper treatment of a significant number of Chinese mentally ill patients under the care of their families. (shrink)