This paper reviews the ethical literature on conflicts between health professionals and parents about medical decision-making for children. We present the results of a systematic review which addressed the question ‘when health professionals and parents disagree about the appropriate course of medical treatment for a child, under what circumstances is the health professional ethically justified in overriding the parents’ wishes?’ We identified nine different ethical frameworks that were put forward by their authors as applicable across various ages and clinical scenarios. (...) Each of these frameworks centred on a different key moral concept including harm, constrained parental autonomy, best interests, medically reasonable alternatives, responsible thinking and rationality. (shrink)

This paper discusses the role of consent in decision making generally and its role in end of life decisions in particular. It outlines a conception of autonomy which explains and justifies the role of consent in decision making and criticises some misapplications of the idea of consent, particular the role of fictitious or “proxy” consents.Where the inevitable outcome of a decision must be that a human individual will die and where that individual is a person who can consent, then that (...) decision is ethical if and only if the individual consents. In very rare and extreme cases such a decision will be ethical in the absence of consent where it would be massively cruel not to end life in order to prevent suffering which is in no other way preventable.Where, however, the human individual is not a person, as is the case with abortion, the death of infants like Mary , or in the very rare and extreme cases of those who have ceased to be persons like Tony Bland, such decisions are governed by the ethics of ending the lives of non-persons. (shrink)

A summary of the existing literature related to moral distress (MD) and the paediatric intensive care unit (PICU) reveals a high-tech, high-pressure environment in which effective teamwork can be compromised by MD arising from different situations related to: consent for treatment, futile care, end-of-life decision making, formal decision-making structures, training and experience by discipline, individual values and attitudes, and power and authority issues. Attempts to resolve MD in PICUs have included the use of administrative tools such as shift worksheets, the (...) implementation of continuing education, and encouragement to report. The literature does not yet show these approaches to be effective in the resolution of MD. The need to acknowledge MD among PICU teams is discussed and an argument made that, to facilitate understanding among team members, practice stories need to be shared. (shrink)

Standard views on surrogate decision making present alternative ideal models of what ideal surrogates should consider in rendering a decision. They do not, however, explain the physician''s responsibility to a patient who lacks decisional capacity or how a physician should regard surrogates and surrogate decisions. The authors argue that it is critical to recognize the moral difference between a patient''s decisions and a surrogate''s and the professional responsibilities implied by that distinction. In every case involving a patient who lacks decisional (...) capacity, physicians and the treatment team have to make judgments about the appropriateness of both the surrogate and the surrogate''s decision. They have to assess the surrogate''s decisional capacity and attitude toward the patient as well as the reasons that support the surrogate''s decision. This paper provides a model for acceptable surrogate decisions and a standard for blocking inappropriate surrogates. Only decisions based on widely shared reasons are allowable for surrogate refusal of highly beneficial treatment. (shrink)

In this article I argue for an interpretive approach to bioethics with critically ill children. I begin by highlighting the dominant Anglo-American bioethical framework that defines standards for ethical care in critically ill children and then outline a critique of this framework. Drawing predominantly on the ideas of Charles Taylor, Michael Walzer and Richard Zaner, I call for a reconception of bioethics and propose an interpretive ‘thick’ framework that is centred on culture and context. Finally, I illustrate this interpretive approach (...) through a comparative study of two cases in pediatric intensive care: the narratives of Marc and Larry. These case studies reveal that ethical dilemmas in pediatric critical care can be traced to relational tensions over respect, trust and power rooted in the disparity of moral horizons among the persons involved. (shrink)

Clinicians sometimes disagree about how much to honor surrogates’ deeply held cultural values or traditions when they differ from those of the host country. Such a controversy arose when parents requested a cultural accommodation to let their infant die by withdrawing life saving care. While both the parents and clinicians claimed to be using the Best Interests Standard to decide what to do, they were at an impasse. This standard is analyzed into three necessary and jointly sufficient conditions and used (...) to resolve the question of how much to accommodate cultural preferences and how to treat this infant. The extreme versions of absolutism and relativism are rejected. Properly understood, the Best Interests Standard can serve as a powerful tool in settling disputes about how to make good decisions for those who cannot decide for themselves. (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)

There is a broadly held view that neonatologists are ethically obligated to act to override parental nontreatment decisions for imperiled premature newborns when there is a reasonable chance of a good outcome. It is argued here that three types of uncertainty undercut any such general obligation: (1) the vagueness of the boundary at which an infant’s deficits become so intolerable that death could be reasonably preferred; (2) the uncertainty about whether aggressive treatment will result in the survival of a reasonably (...) healthy child or, alternatively, the survival of a child with intolerable deficits; and (3) the inability to determine an acceptable ratio between the likelihoods of those two outcomes. It is argued that the broadly held view accords insufficient weight to the fact that newborn intensive care increases the likelihood of harm to the child by effecting survival with intolerable deficits. Though treatment may offer a reasonable chance of a good outcome, it is argued that there are situations in which neonatologists should nonetheless defer to parental nontreatment decisions. (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)

The recent MB case involved a dispute between an infant’s parents and his medical team about the appropriateness of continued life support. The dispute reflected uncertainty about two key factors that inform medical decision making for seriously ill infants: both the amount of pain MB experiences and the extent of his cognitive capacities are uncertain. Uncertainty of this order makes decision making in accordance with the best-interests principle very problematic. This article addresses two of the problems that cases such as (...) that of MB pose for those charged with making medical decisions for infants. First, the question of the moral significance of the interest in avoiding pain is considered. It is claimed that this interest can be outweighed by higher-order interests such as those related to autonomy but that where such higher-order interests do not exist, the interest in avoiding pain should be prioritised. Second, the question of how to proceed in cases in which the level of pain or the extent of an infant’s higher-order interests cannot be decisively established is considered. It is suggested that when genuine uncertainty over the interests of an infant exists, parental views about treatment should prevail.The English family courts recently adjudicated on another case involving conflict between parents and a medical team over the provision of life-prolonging medical treatment for an infant. At the time of the ruling, MB was an 18-month-old boy with type I spinal muscular atrophy. His life expectancy was very short , he was almost completely paralysed and he required constant ventilation. MB’s parents wanted a tracheotomy to be performed to facilitate long-term ventilation and allow for some independence from the hospital ward, but the …. (shrink)

Attempts to stifle debate in medical ethics must be strongly resistedOn 30 September and 1 October this year a conference on “Ethics, Science and Moral Philosophy of Assisted Human Reproduction” was held at the Royal Society in London. The conference was organised by the German philosopher Edgar Dahl and the eminent embryologist Robert Edwards, and the speakers included scientists, IVF practitioners, and philosophers from the UK, the USA, Europe, and Australia Because the programme included discussion of preimplantation genetic diagnosis and (...) reproductive choice the conference was targeted by an anonymous group calling itself “People Against Eugenics” that is hiding its real identity behind an email address.If this shadowy organisation had had …. (shrink)

: This article draws upon the Roman Catholic distinction between "ordinary" and "extraordinary" means of medical treatment to analyze the case of "Jodie" and "Mary," the Maltese conjoined twins whose surgical separation was ordered by the English courts over the objection of their Roman Catholic parents and Cormac Murphy-O'Connor, the Roman Catholic Cardinal Archbishop of Westminster. It attempts to shed light on the use of that distinction by surrogate decision makers with respect to incompetent patients. In addition, it critically analyzes (...) various components of the distinction by comparing the reasoning used by Catholic moralists in this case with the reasoning used in other cases that raise similar issues, including women facing crisis pregnancies who prefer abortion to adoption and the Indiana "Baby Doe" case. (shrink)

A case study of an ethical dilemma concerning twin nine-year-old sisters in a persistent vegetative state is presented. This is illustrated by the use of a systematic ethical framework to examine the case and the resolution, which was ultimately obtained with nurse—parent interrelations, using the human becoming nursing theory.

The High Court ruling that a premature baby should be not be resuscitatedLate in the afternoon of Thursday, 7 October 2004, Mr Justice Hedley ruled in a highly publicised dispute between parents and doctors about the future care of a severely disabled infant.1 With sadness, and some reluctance, the judge held that Charlotte Wyatt should not be subjected to any further invasive or aggressive treatment to prolong her life, despite her parents’ insistence that she be given every chance to survive (...) a little longer. The judgment was limited in scope. The judge did no more than authorise Charlotte’s doctors “in the event of a disagreement between the parents and themselves, not to send the child for artificial ventilation or similar aggressive treatment”.The fate of baby Charlotte attracted massive media coverage. Just a week later another dispute between a mother and her child’s doctors hit the headlines.2 A third dispute about the care of an older child also looks likely to end up in court.3 However, Charlotte’s case is unusual only in that the case was heard in open court and because it attracted such publicity. For at least 23 years,4 the Family Division of the High Court in England has heard a series of cases when parents and professionals have profoundly disagreed about how best to treat, or not to treat, a very sick baby. As happened in Charlotte’s case, the courts have usually,5 in the end, endorsed the professionals’ judgment about the best interests of the infant. The coincidence of three such high profile cases has prompted speculation that parents will …. (shrink)

a column edited by Tuija Takala and Matti Häyry, welcomes contributions on the conceptual and theoretical dimensions of bioethics.

In this article I consider the case of the surgical separation of conjoined twins resulting in the immediate and predictable death of the weaker one. The case was submitted to English law by the hospital, and the operation permitted against the parents’ wishes. I consider the relationship between the legal decision and the moral reasons adduced in its support, reasons gaining their force against the framework of much mainstream normative ethical theory. I argue that in a few morally dilemmatic situations, (...) such a legalistic–theoretical approach cannot plausibly accommodate certain irreducible and ineliminable features of the ethical experience of any concrete individual implicated in the situation, and that this failure partly undermines its self–appointed role of guiding such an individual's conduct. For example, the problem as experienced by the judge and by the parents might not be the same problem at all, and some of their respective reasons may be mutually unintelligible or impotent. I certainly do not argue for a rejection of law or of moral theory; I merely challenge their implicit claim to comprehensiveness and their fixation with an idealised and putatively universal rationality modelled on converging scientific enquiry. Finally, I claim that at least in the twins’ case there may be insufficient normative robustness to the conclusions reached, or indeed reachable, by the court in a situation where intuitions and moral reasons pull in fundamentally incommensurable directions; as such, there may be room for an acknowledgement of the spiritual, through a humble abstention from making a decision – which is not to be confused with deciding to do nothing. (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)

Our response to death may differ depending on the patient’s age. We may feel that death is a sad, but acceptable event in an elderly patient, yet feel that death in a very young patient is somehow unfair. This paper explores whether there is any ethical basis for our different responses. It examines in particular whether a patient’s age should be relevant to the determination that an intervention is medically futile. It also considers the responsibilities of health professionals and the (...) rights of family members in situations where an interventions is clearly futile. (shrink)

It is a terrible thing to let a child die against the deeply held and clearly expressed view of the child's parents. Yet it could be claimed that there are some conditions so burdensome that it may also be a terrible thing to deny a child the escape of death. The focus of this piece is on three ethical issues relating to withholding and withdrawal of treatment in a neonatal and paediatric context. The first is whether there are other interests (...) that should be considered as well as those of the child. The second is how we should think about the interests of the child. The third is a set of issues raised by cases where the medical team and the family reach different conclusions about what it is best to do. Reference is made to the recent cases of Charlotte Wyatt and Luke Winston-Jones. (shrink)

Most legal analyses of selective nontreatment of seriously ill children centre on the question of whether it is in a child’s best interests to be kept alive in the face of extreme suffering and/or an intolerable quality of life. Courts have resisted any direct confrontation with the question of whether the child’s death is in his or her best interests. Nevertheless, representations of death may have an important role to play in this field of jurisprudence. The prevailing philosophy is to (...) configure death as a release from a futile or painful existence and/or as a dignified end in an objectively hopeless situation. However, there can be disagreement about the meaning of death in these settings. Some parents object that death would be premature or that it represents a culpable neglect of their child. A closer examination of these discordant interpretations allows for a better comprehension of the cultural understandings that underscore clinical and legal accounts of death following end-of-life decisions. (shrink)

It is commonly said that patients have no right to demand that treatment must be continued when medical carers believe it is “futile” to continue it. There are certainly many judicial statements to this effect, some of which are quoted in this paper. However, there are various ways that courts can intervene, even if they do not order directly that treatment must be provided or continued. First, patients or their representatives may argue the process of decision making was unfair or (...) that they were unfairly discriminated against when treatment has been refused. To date, these arguments have met with limited success so far as enabling patients to have treatment provided or continued against medical advice. More recently, however, some patients have challenged the lawfulness of a proposed treatment regime by advancing human rights arguments, based in turn on a broader aspect of patients’ “best interests” than best medical interests. (shrink)

The pregnancy of a 12-year-old girl provides the basis for a consideration of approaches to a dilemma brought about by conflicting expectations. Here, medical opinion is to reject action implied by the lack of Gillick competence and by a ‘parental responsibility’ claim adopted by the girl’s mother. Construction of the dilemma and the subsequent process, which sought resolution, illustrates that the Gillick ruling, and other guidelines intended to be helpful, can prove to be less so.

The Dutch rules governing neonatal euthanasia, known as the Groningen Protocol, require parental consent for severely disabled infants with poor prognoses to have their lives terminated. This paper questions whether parental consent should be dispositive in such cases, and argues that the potential suffering of the neonate or pediatric patient should be the decisive factor under such unfortunate circumstances.

The case of Twin B involves the decision to send a newborn to a less intensive Level 2 special care nursery (SCN) than to the Level 3 neonatal intensive care unit (NICU) that is considered optimal by the physician. The physician’s acceptance of the transfer is against the child’s best interest and is due to parental convenience. In analyzing the case, we reject the best interest standard. Our rejection is partly supported by the views of Douglas Diekema, John Hardwig, and (...) Lannie Ross. Instead of the best interest standard, we offer and defend an approach we base on a microeconomic analysis of externalities, such as those involved with automobile emissions. This extends our previously presented general microeconomic approach to patient decision-making. It provides a clearer way to evaluate situations, like those of Twin B, in which burdens faced by family members may be used to determine the appropriate level of treatment for a decisionally incapable patient. (shrink)