Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue (...) that the best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (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)

We developed this study to examine the issue of parental refusal of treatment, looking at the issue through a cultural competence lens. Recent cases in Canada where courts have declined applications by clinicians for court orders to overrule parental refusal of treatment highlight the dispute in this area. This study analyses the 16 cases of a larger group of 24 cases that were selected by a literature review where cultural or religious beliefs or ethnic (...) identity was described as important reasons behind the refusal. The most significant finding was that nearly all of the cases cited unacceptable side effects as the main reason for declining treatment. We then analysed the detail of the cases and concluded that in the first instance a skilled clinical approach to develop an agreed management plan is by far the best approach. In the event that agreement cannot be reached we recommend engaging a mediator to help the clinician and parents/child to find an agreeable way forward. We argue that the option of se... (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)

When should doctors seek protective custody to override a parent’s refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25–50%. This is not the case when the (...) class='Hi'>treatment in question is open heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40–50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations. (shrink)

Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents’ perceptions of their child’s projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which (...) to consider the appropriateness of parental refusal based upon an infant’s projected quality of life. (shrink)

When there is a conflict between parents and the physician over appropriate care due to an infant whose decision prevails? What standard, if any, should guide such decisions?This article traces the varying standards articulated over the past three decades from the proposal in Duff and Campbell’s 1973 essay that these decisions are best left to the parents to the Baby Doe Regs of the 1980s which required every life that could be salvaged be continued. We conclude with support for the (...) policy articulated in the 2007 guidelines of the American Academy of Pediatrics on non-intervention or withdrawal of intensive care for high-risk newborns. (shrink)

The standard approach to parental refusal of transfusion on religious grounds in many newborn intensive care units and paediatric services is to override the refusal and provide the transfusion, usually with court intervention if time allows. This approach is justified by the child's right to effective treatment, seen to outweigh the parents' right to religious freedom and their right to decide for their child. That justification, however, may be limited by the predicted effectiveness of the transfusion (...) (or any proposed treatment) in preventing significant harm to the child. A case where parental refusal was appropriately respected is briefly discussed. (shrink)

Adolescents are routinely treated differently to adults, even when they possess similar capacities. In this article, we explore the justification for one case of differential treatment of adolescents. We attempt to make philosophical sense of the concurrent consents doctrine in law: adolescents found to have decision-making capacity have the power to consent to—and thereby, all else being equal, permit—their own medical treatment, but they lack the power always to refuse treatment and so render it impermissible. Other parties, (...) that is, individuals who exercise parental responsibility or a court, retain the authority to consent on an adolescent’s behalf. We explore four defences of the doctrine. We reject two attempts to defend the asymmetry in the power to consent to and refuse medical treatment by reference to transitional paternalism. We then consider and reject a stage of life justification. Finally, we articulate a justification based on the distinctiveness of adolescent well-being. (shrink)

For over four decades, knowledge that symptoms of some inherited diseases can be prevented or reduced via early detection and treatment in newborns has underpinned state-funded screening programs in most developed countries. Conditions for which newborn screening is now a recognized preventative public health initiative include phenylketonuria, congenital hypothyroidism, and, more recently, cystic fibrosis and sickle cell disorder. The use of tandem mass spectrometry to detect conditions such as amino-acidopathies and fatty-acid oxidation defects is also becoming increasingly prevalent. a.

In recent years, decision-making processes related to medical practices have undergone a change from physician paternalism towards patient autonomy. However, it has been put forward that this situation has changed into or strengthened the parent paternalism for children. Parental paternalism might bring along decisions of refusing the child’s treatment, in such a way to occasionally violate the health right of the child. Paternalistic attitude of parents may also cause physicians to direct towards defensive medicine practices and to display (...) a tendency of avoiding legal liability rather than the benefit of the patient. Coming to the decision of the parent on refusing the child’s treatment together defensive medicine approach of the physician and an environment, where the legal protection mechanisms for the child are not efficient enough, causes serious violations of health rights. International contracts and national law require the protection of the child’s best interest in all cases. In that case, parent’s decision on refusing treatment of the child should be restricted within the scope of the child’s best interest and healthy life right. (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)

Dealing with situations where parents’ views about treatment for their child are strongly opposed to doctors’ views is one major area of ethical challenge in paediatric health care. The traditional approach focuses on the child’s best interests, but this is problematic for a number of reasons. The Harm Principle test is regarded by many ethicists as more appropriate than the best interests test. Despite this, use of the best interests test for intervening in parental decisions is still very (...) common in clinical settings and can lead to confusion. In this paper, I propose the Zone of Parental Discretion as a means of putting into practice the key ideas of the Harm Principle, in a clear, step-by-step process. The Zone of Parental Discretion provides a tool for ethical deliberation by clinicians and ethicists about all situations in which parents and doctors disagree about treatment of a child, whether parents are refusing medically recommended treatment, or requesting non-recommended treatment. (shrink)

Infants are unable to make their own decisions or express their own wishes about medical procedures and treatments. They rely on surrogates to make decisions for them. Who should be the decision-maker when an infant’s biological parents are also minors? In this paper, we analyse a case in which the biological mother is a child. The central questions raised by the case are whether minor parents should make medical decisions on behalf of an infant, and if so, what are the (...) limits to this decision-making authority? In particular, can they refuse treatment that might be considered best for the infant? We examine different ethical arguments to underpin parental decision-making authority; we argue that provided that minor parents are capable of fulfilling their parental duties, they should have a right to make medical decisions for their infant. We then examine the ethical limits to minor parents’ decision-making authority for their children. We argue that the restricted authority that teenagers are granted to make medical decisions for themselves looks very similar to the restricted autonomy of all parents. That is, they are permitted to make choices, but not harmful choices. Like all parents, minor parents must not abuse or neglect their children and must also promote their welfare. They have a moral right to make medical decisions for their infants within the same ‘zone of parental discretion’ that applies to adult parents. We conclude that adult and minor parents should have comparable decision-making authority for their infants. (shrink)

Health care workers or others may wish to override parental decisions because of their impact on the health or safetySafety of a child or others. Justification of such an action requires two types of principle: an authorityAuthority principle that designates the process for reversal, and anPrincipal, interventionintervention principleIntervention principle that specifies the grounds for reversal. It is generally accepted that states may overruleOverruleparentsParents’ decisions for good cause. I argue that the role of the state is to provide sufficient protection (...) against parental malfeasance. Parental malfeasance can be construed as either exposing a child to harmHarm or as insufficient defense of the child’s interestsChild's interests. I propose a test to determine what sorts of parental decisions might trigger intervention. I also propose constraints on government action to minimize government unfairness in applying the test. I show how this plays out in application. (shrink)

That Jehovah's Witnesses cannot refuse life-saving blood transfusions on behalf of their children has acquired the status of virtual “consensus” among bioethicists. However strong the consensus may be on this matter, this article explores whether this view can be plausibly defended on liberal principles by examining it in light of one particularly well worked-out liberal political theory, that of Rawls. It concludes that because of the extremely high priority Rawls attributes to “freedom of conscience,” and the implication from the original (...) position that parents must act paternalistically toward their children as their protectors, Jehovah's Witnesses cannot legitimately be barred from making decisions on behalf of their children, even when the consequences of such decisions are serious and irremediable. (shrink)

In the United Kingdom women have access to termination of pregnancy for maternal reasons until 24 weeks’ completed gestation, but it is accepted practice for children born at or beyond 25 weeks’ gestation to be treated according to the child’s perceived best interests even if this is not in accordance with parental wishes. The authors present a case drawn from clinical practice which highlights the discomfort that parents may feel about such an abrupt change in their rights over their (...) child, and argue that parents should have greater autonomy over treatment decisions regarding their prematurely born children. (shrink)

Recently, the Supreme Court of Nigeria in Tega Esabunor v Faweya & Ors (2019) LPELR 46961 (SC) dismissed an appeal seeking to quash the order of a magistrate court for the transfusion of blood to a baby. The appellants contended that the court had no jurisdiction to make theorder. The crux of the case was whether the parents’ right to consent to the child’s treatment based on religious beliefs supersedes the child’s right to live, thus reflecting the tension between (...) a parent’s right to give consent to the choice of treatment for their child, and the court’s power to override such rights through the inherent parens patriae jurisdiction of the state. The case also reflects the tension between the freedom of a parent to practise their religion and the right of a child to live, in the medical context. This article examines the findings of the Supreme Court in Tega Esabunor’s case, considering whether the court’s decision is in line with the generally accepted practice on when the state can intervene if persons with parental responsibility refuse medical treatment for an incompetent child because of religious beliefs.Cases from other jurisdictions are analysed to ascertain the position of foreign courts. It is submitted that the Supreme Court’s judgmentreflects accepted international practice regarding parental refusal of consent for medical treatment of a child. (shrink)

Background Doctors sometimes encounter parents who object to prescribed treatment for their children, and request suboptimal substitutes be administered instead. Previous studies have focused on parental refusal of treatment and when this should be permitted, but the ethics of requests for suboptimal treatment has not been explored. Methods The paper consists of two parts: an empirical analysis and an ethical analysis. We performed an online survey with a sample of the general public to assess respondents’ (...) thresholds for acceptable harm and expense resulting from parental choice, and the role that religion played in their judgement. We also identified and applied existing ethical frameworks to the case described in the survey to compare theoretical and empirical results. Results Two hundred and forty-two Mechanical Turk workers took our survey and there were 178 valid responses. Respondents’ agreement to provide treatment decreased as the risk or cost of the requested substitute increased. More than 50% of participants were prepared to provide treatment that would involve a small absolute increased risk of death for the child and a cost increase of US$<500, respectively. Religiously motivated requests were significantly more likely to be allowed. Existing ethical frameworks largely yielded ambiguous results for the case. There were clear inconsistencies between the theoretical and empirical results. Conclusion Drawing on both survey results and ethical analysis, we propose a potential model and thresholds for deciding about the permissibility of suboptimal treatment requests. (shrink)

Clinical ethics records offer bioethics researchers a rich source of cases that clinicians have identified as ethically complex. In this paper, we suggest that clinical ethics records can be used to point to types of cases that lack attention in the current bioethics literature, identifying new areas in need of more detailed bioethical work. We conducted an analysis of the clinical ethics records of one paediatric hospital in Australia, focusing specifically on conflicts between parents and health professionals about a child’s (...) medical treatment. We identified, analysed, and compared cases of this type from the clinical ethics records with cases of this type discussed in bioethics journals. While the cases from journals tended to describe situations involving imminent risk to the child’s life, a significant proportion of the clinical ethics records cases involved different stakes for the child involved. These included distress, poorer functional outcome, poorer psychosocial outcome, or increased risk of surgical complications. Our analysis suggests that one type of case that warrants more detailed ethics research is parental refusal of recommended treatment, where the refusal does not endanger the child’s life but rather some other aspect of the child’s well-being. (shrink)

This paper traces the development of parental rights to accept or to refuse treatment for a defective newborn infant in the United Kingdom and in the United States of America; its main purpose is to explore the common trends from which an acceptable policy may be derived. It is probable that the British law on parental decision-making in respect of infants suffering from Down's syndrome is to be found in the civil case of In Re B rather (...) than in the criminal case of R v Arthur. United States court decisions are strongly influenced by constitutional law and reflect the right to personal privacy. The position on each side of the Atlantic seems very similar but this similarity includes a sense of uncertainty as to legal responsibility. There is a case for agreed guidelines and a suggested format is offered for consideration. (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)

When mature minors face a decision with important consequences, such as whether to undergo a risky but potentially life-saving medical procedure, who should decide? Relying on liberal political theory’s account of the importance of decisional autonomy for adults, and given the scalar nature of the capacities needed to exercise decisional autonomy, I argue that mature minors with the requisite capacities and commitments have a right to decisional autonomy though they are not yet 18. I argue for this right using a (...) ‘balancing of interest’ account of rights: the interest mature minors have in decisional autonomy outweighs their parents’ interest in shaping their children as a means of ‘creative self-extension’. But I propose two limitations on this right: requests for waivers of the rule that one must be at least 18 to decide cannot be so numerous as to make adjudication impractical; and though a competent adult’s voluntary decision to refuse medical treatment should generally be respected, the state may reject a mature minor’s decision upon review by an indifferent judge of the minor’s capacities and reasons. The judge reviews not the substantive merits or prudence of the decision, but whether the decision promotes the interest in decisional autonomy, by asking among other things whether the decision is the minor’s own, is tethered to core commitments rather than based on arbitrary preferences, and could be regarded as reasonable to the minor’s ‘future self’. (shrink)

The treatment decisions of competent adults, especially treatment refusals, are generally respected. In the case of minors something turns on their age, and older minors ought increasingly to make their own decisions. On the other hand, parents decide on behalf of infants and young children. Their right to do so can best be justified in terms of the importance of preserving intimate family relationships, rather than in terms of the child's best interests, although the child's best interests will (...) most often follow from this arrangement. Nevertheless, there are and ought to be legal, ethical, and financial constraints on parental decision making. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Refusals of Treatment and Requests for DeathTom L. Beauchamp (bio)It would be hard to overestimate the importance of two decisions on physician-assisted suicide delivered recently by the Ninth and Second Circuit Courts (Compassion in Dying v. State of Washington, 79 F.3d 790 (9th Cir. 1996) (en banc), aff’g 850 F.Supp. 1454 (W.D. Wash. 1994), rev’g 49 F.3d 586 (9th Cir. 1995); Quill v. Vacco, 80 F.3d 716 (2nd (...) Cir. 1996). They are the highest courts yet to render an opinion on this subject, and their decisions have set the stage for the U.S. Supreme Court to take one of two paths: It will either say that (1) all citizens have a liberty interest in physician-assisted suicide, or that (2) each state may set its own policy on such matters. Whichever path is elected, a right to request physician-assisted suicide is a virtual certainty, at least in some states.These opinions are later segments of an evolving legal history in which courts have held that no criminal liability exists for withholding or withdrawing a life-sustaining treatment when physicians are directed to do so by a patient or an authorized surrogate (see Alan Meisel 1992). The decriminalization of suicide and the right to refuse a life-sustaining treatment now appear to be evolving into a rule that a patient has a legal right to control his or her death, or at least to obtain a lethal prescription. We are at a delicate point in this evolving history. Neither in law nor in bioethics is the justification of physician assistance in suicide the received opinion at the present time, but support for physician assistance in dying could soon become the received opinion in both disciplines.The leading edge of the wedge producing these changes has been widespread acceptance of an extensive right to refuse treatment. This right is today axiomatic in even conservative quarters of bioethics, but 20 years ago it was far from axiomatic that all patients have a right to refuse treatment. Few at that time judged that it would be both immoral and illegal for a physician not to forgo treatment in the face of a competent, authoritative refusal of any form of medical service or treatment.The justification for assistance in bringing about death in medicine is an extension of the justification for letting patients die. Letting a patient die by accepting a valid refusal to continue in life is directly analogous to helping a patient die by accepting a valid request for help. The high value we place on [End Page 371] rights of autonomy thereby spills over from the right to refuse to the underexplored right to request active assistance. 1 As the autonomy interest in this choice increases, denial of help to the patient becomes more burdensome.Those who defend the view that euthanasia and physician-assisted suicide are morally prohibited typically assume that assistance involves an act of killing, that acts of killing are impermissible, and that a defensible distinction exists between killing and letting die. However, this distinction has proved difficult to explicate, and the category of killing often seems distant from the problem at hand. For example, it is an eccentric view that a physician who prescribes a lethal medication to a patient thereby kills the patient (or, for that matter, lets the patient die) when the patient voluntarily ingests the medication and dies. So poor are the conceptual understandings of “killing” and “letting die” that conceptual confusion abounds as to which term to use in almost all morally difficult and controversial cases.A common view is that “letting die” is a matter of “ceasing useless treatments” after which patients die (Gaylin, Kass, Pellegrino, and Siegler 1988). This account is attractive, but too narrow. “Letting die” occurs in medicine under at least two circumstances: cessation of treatment because it is useless and cessation of treatment because it has been refused (which can occur even with useful treatments). Neither conceptually nor morally is “ceasing useless treatment” the proper way to state the condition under which many “letting-die” cases occur. It follows that the type of action—killing or letting... (shrink)

This article explores refusal of medical treatment by adult patients from ethical and legal perspectives. Initially, consequentialist and deontological ethical theory are outlined. The concepts of autonomy, paternalism and competence are described and an overview of Beauchamp and Childress’s principle-based approach to moral reasoning is given. Relevant common law is discussed and the provisions of the Mental Capacity Act 2005 in assessing competence is evaluated. In order to demonstrate the consideration of moral issues in clinical practice, ethical theory (...) is applied to two well-known incidents: the case of Re MB, where doubt over decision-making capacity led to a paternalistic act to override a patient’s choice; and the death of Emma Gough, a situation where respect for autonomy prevailed when healthcare staff acted lawfully in following a patient’s refusal of life-saving treatment. Finally, guidance from regulatory bodies on the roles and responsibilities of health professionals in relation to this topic are considered. (shrink)

Introduction:Prehospital emergency medicine is a specific field of emergency medicine. The basic approach of prehospital emergency medicine is to provide patients with medical intervention at the scene of the incident. This special environment causes health professionals to encounter various problems. One of the most important problems in this field is ethics, in particular questions involving refusal of treatment and the processes associated with it.Objective:The objective of this study is to identify emergency health professionals’ views regarding refusal of (...) treatment.Methods:This study was conducted with 356 health professionals who were on active duty in prehospital emergency health services. The data were collected through a form which included 10 statements. The participants were asked to indicate their level of agreement with the statements given by rating them between 0 and 10.Ethical considerations:Before conducting the research, permission was received from the local ethics committee. Participants were given written information about the purpose of the study. Participants were assured that their participation was voluntary.Results:The healthcare professionals with fewer years of experience in the profession and female participants adopted an attitude of giving priority to providing care. Young participants, in general, respected patient autonomy. However, paradoxically, when it comes to emergency medical cases, they expressed an opinion closer to paternalism.Conclusions:This study has found that prehospital emergency health professionals generally respect the patient’s right to refuse treatment; however, they do not prioritize this right when there is a life-threatening situation or when the person does not have decision-making capacity. In these cases, prehospital emergency health professionals tended to adopt a more paternalistic approach. (shrink)

In 1985, after a long university career teaching philosophy and humanities, in which my only serious worries over the years were centered on such things as getting promoted, course preparations, and faculty affairs, I found myself confronted, as a medical ethics committee member, with a life and death issue. It concerned the care of an infant suffering from posthemorrhagic hydrocephalus, for which there appeared to be no permanently effective treatment. The parents refused to consider the discontinuing of aggressive care (...) even though this prolonged the suffering of their child. This standoff continued for 5 months, until the parents decided that it was God’s wish that aggressive treatment cease. (shrink)

It has been forty years since the first multi-channel cochlear implant was used in Australia. While heralded in the hearing world as one of the greatest inventions in modern medicine, not everyone reflects on this achievement with enthusiasm. For many people in the Deaf community, they see the cochlear implant as a tool that reinforces a social construct that pathologizes deafness and removes Deaf identity. In this paper, I set out the main arguments for and against cochlear implantation. While I (...) conclude that, on balance, cochlear implants improve the well-being and broaden the open futures of deaf children, this does not justify mandating implants in circumstances where parents refuse them because this may compound unintended harms when society interferes in the parent-child relationship. For this reason, I argue that parental refusal of cochlear implantation falls within Gillam’s concept of the zone of parental discretion. (shrink)

We describe a case of parents refusing a tracheostomy for an otherwise healthy newborn. The refusal was not honored because permitting the refusal would have violated state law, which required a child to have a qualifying condition (e.g. a terminal diagnosis, permanent unconsciousness, incurable condition with severe suffering) to remove or withhold life-sustaining treatment. However, this case strained the relationship between the parents and medical staff, who worried about sending the newborn home with a tracheostomy where she (...) was not wanted. While many ethical issues arise in treatment refusal cases like this, we focus on the opportunity for ethicists to help the medical staff reflect on the technological alienation of the parents, which may help foster empathy, reduce moral distress, and strengthen the quality of the doctor-parent-patient triad. (shrink)

The four principles approach to medical ethics plus specification is used in this paper. Specification is defined as a process of reducing the indeterminateness of general norms to give them increased action guiding capacity, while retaining the moral commitments in the original norm. Since questions of method are central to the symposium, the paper begins with four observations about method in moral reasoning and case analysis. Three of the four scenarios are dealt with. It is concluded in the “standard” Jehovah’s (...) Witness case that having autonomously chosen the authority of his religious institution, a Jehovah’s Witness has a reasonable basis on which to refuse a recommended blood transfusion. The author’s view of the child of a Jehovah’s Witness scenario is that it is morally required—not merely permitted—to overrule this parental refusal of treatment. It is argued in the selling kidneys for transplantation scenario that a fair system of regulating and monitoring would be better than the present system which the author believes to be a shameful failure. (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)

In the present super-aging society, issues concerning what treatment should be given for incapacitated patients have become more important than ever before. This paper discusses whether or not an incapacitated patient’s refusal of treatment should be respected. The authors present a complete hypothetical scenario involving a 75-year-old moderately demented man suffering from malignant lymphoma. Of primary importance are the respect for patient dignity and the protection of human rights. Acts such as coercion, disregard, restriction, and surveillance can (...) be unethical in many situations. The effectiveness of chemotherapy for malignant lymphoma and its adverse outcomes could offset each other, leaving no net benefits for the patient. The patient is vulnerable and this very vulnerability requires the utmost protection and care. However, protection must be sensitive and comprehensive and the protection of his life at the expense of many other valuable factors is not justifiable. Coercing unwanted treatment would be intrusion, not protection, because of the physical and psychological suffering. When the refusal is explicit, consistent, and stable enough, it should to be viewed as true and current desire. Due to moderate dementia, the patient has lost his rational capacity, but his emotional capacity remains. If the remaining portion of his personality is rooted in his feelings, these feelings should be respected as much as possible. Those involved in the care of the patients who refuse treatment should not force them to undergo it simply on the grounds that it may be an established standard in their own country. What must be asked first is whether or not forced treatment would promote the patient’s subjective well-being. Additionally, treatment decisions should not be distorted due to the selfishness or discriminatory feelings of those involved in his care. In situations in which patients lack decisionmaking capacities, overriding the patients’ refusals of treatment should be regarded as an exception, rather than a standard course of action. Even in patients who are incapacitated, treatment refusal could stem from the feelings of the individual. Their subjective wellbeing would not be improved through close observation, restraint, denial, and coercion, the purpose of which they does not understand. (shrink)

Christian Scientists' refusal of medical care for their children illustrates the kind of conflict over moral and practical authority that can arise between groups in a pluralistic society. While consensus may not be possible, changes in the way both groups socialize members may allow the medical and Christian Science communities to achieve a compromise that is respectful to both.

Consensual homicide remains a crime in jurisdictions where active voluntary euthanasia has been legalized. At the same time, both jurisdictions, in which euthanasia is legal and those in which it is not, recognize that all patients (whether severely ill or not) have the right to refuse or withdraw medical treatment (including life-saving treatment). In this paper, I focus on the tensions between these three norms (the permission of active euthanasia, the permission to reject life-saving treatment, and the (...) prohibition of consensual homicide), assuming a justification of euthanasia based on the right to (personal) autonomy. I argue that the best way to provide a coherent account of these norms is to claim that patients have two distinct rights: the right to autonomy and the right to bodily integrity. This solution has some relevant implications for the discussion of the legalization of active euthanasia. (shrink)

The vignette described in the introduction of this symposium raises a number of ethical and legal problems for physicians who work for correctional institutions and death row inmates. They are not confined to correctional physicians, however, as states have requested aid from practicing physicians in the community, and even from other states, when conflicts have arisen in the treatment of death row inmates as they near the date of execution. As outlined, the case involves a 48-year-old man with a (...) long history of schizophrenia, initially diagnosed at age 19. Compliant with medication, he remained generally free from positive symptoms-delusions and hallucinations. Nonetheless, he committed two murders during a robbery and was sentenced to death. Since his incarceration, the defendant has consistently refused psychotropic medications and has been forcibly medicated on several occasions when he exhibited violent outbursts and was overtly psychotic. (shrink)

The role of physicians in death penalty cases has provoked discussion in both the legal system as well as in professional organizations. Professional groups have responded by developing ethical guidelines advising physicians as to current ethical standards. Psychiatric dilemmas as a subspecialty with unique roles have required more specific guidelines. A clinical vignette provides a focus to explicate the conflicts.

In their recent article, Erbay et al considered whether a seriously injured patient should be able to refuse treatment if the refusal was based on a (mis)interpretation of religious doctrine. They argued that in such a case ‘what is important…is whether the teaching or philosophy used as a reference point has been in fact correctly perceived’ (p 653). If it has not been, they asserted that this eroded the patient's capacity to make an autonomous decision and that therefore, (...) in such cases, it is the role of the healthcare professional (HCP) to ‘assist patients to think more clearly and rationally’ (p 653). There are, however, a number of problems with the reasons why Erbay et al suggest we should help patients to rationalise their decisions and how HCPs should go about this. In this article, the author explores some of their main arguments regarding consent and rationality (particularly in relation to religious beliefs), as well as Erbay et al's normative claim that HCPs have an obligation to promote autonomy by helping patients to come to a ‘rational’ decision. Ultimately, the author agrees that the (temporary) solution to the dilemma presented in this scenario (which was to insert an intravenous cannula into the patient in order to allow an infusion of fluids in the event that he changed his mind) seemed both pragmatic and ethically permissible. However, it is suggested that the arguments which underpin this conclusion in Erbay et al's article are largely unsound. (shrink)

This article is a critical analysis of Judge J. Skelly Wright's “Application of President and Directors of Georgetown College.” Wright's paper concerns the refusal of a Mrs. Jones to allow a blood transfusion needed to save her life and Wright's decision, based on a number of social, medical, legal, religious, and psychological facts, to permit the transfusion. The presentation is a close paraphrase of Wright's own case write-up. Critical expositions of five arguments explicitly advanced by Wright for his decision (...) to allow a transfusion are given, as are attempts to track down other justifying reasons he may have had for his decision. (shrink)

This article is a critical analysis of Judge J. Skelly Wright's “Application of President and Directors of Georgetown College.” Wright's paper concerns the refusal of a Mrs. Jones to allow a blood transfusion needed to save her life and Wright's decision, based on a number of social, medical, legal, religious, and psychological facts, to permit the transfusion. The presentation is a close paraphrase of Wright's own case write-up. Critical expositions of five arguments explicitly advanced by Wright for his decision (...) to allow a transfusion are given, as are attempts to track down other justifying reasons he may have had for his decision. (shrink)

Critical congenital heart disease screening is rapidly becoming the standard of care in the United States after being added to the Recommended Uniform Screening Panel in 2011. Newborn screens typically do not require affirmative parental consent. In fact, most states allow parents to exempt their baby from receiving the required screen on the basis of religious or personally held beliefs. There are many ethical considerations implicated with allowing parents to exempt their child from newborn screening for CCHD. Considerations include (...) the treatment of religious exemptions in our current legal system, as well as medical and ethical principles in relation to the rights of infants. Although there are significant benefits to screening newborns for CCHD, when a parent refuses for religious or personal beliefs, in the case of CCHD screening, the parental decision should stand. (shrink)