When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)
Recent studies using functional magnetic resonance imaging of patients in a vegetative state have raised the possibility that such patients retain some degree of consciousness. In this paper, the ethical implications of such findings are outlined, in particular in relation to decisions about withdrawing life-sustaining treatment. It is sometimes assumed that if there is evidence of consciousness, treatment should not be withdrawn. But, paradoxically, the discovery of consciousness in very severely brain-damaged patients may provide more reason to let them die. (...) Although functional neuroimaging is likely to play an increasing role in the assessment of patients in a vegetative state, caution is needed in the interpretation of neuroimaging findings. (shrink)
One of the most contentious ethical issues in the neonatal intensive care unit is the withdrawal of life-sustaining treatment from infants who may otherwise survive. In practice, one of the most important factors influencing this decision is the prediction that the infant will be severely intellectually disabled. Most professional guidelines suggest that decisions should be made on the basis of the best interests of the infant. It is, however, not clear how intellectual disability affects those interests. Why should intellectual disability (...) be more important than physical disability to the future interests of an infant? Is it discriminatory to base decisions on this? This paper will try to unravel the above questions. It seems that if intellectual disability does affect the best interests of the child it must do so in one of three ways. These possibilities will be discussed as well as the major challenges to the notion that intellectual disability should have a role in such decisions. The best interests of the child can be affected by severe or profound intellectual disability. It is, though, not as clear-cut as some might expect. (shrink)
Ethical analyses, professional guidelines and legal decisions support the equivalence thesis for life-sustaining treatment: if it is ethical to withhold treatment, it would be ethical to withdraw the same treatment. In this paper we explore reasons why the majority of medical professionals disagree with the conclusions of ethical analysis. Resource allocation is considered by clinicians to be a legitimate reason to withhold but not to withdraw intensive care treatment. We analyse five arguments in favour of non-equivalence, and find only relatively (...) weak reasons to restrict rationing to withholding treatment. On the contrary, resource allocation provides a strong argument in favour of equivalence: non-equivalence causes preventable death in critically ill patients. We outline two proposals for increasing equivalence in practice: (1) reduction of the mortality threshold for treatment withdrawal, (2) time-limited trials of intensive care. These strategies would help to move practice towards more rational treatment limitation decisions. (shrink)
Predictions of poor prognosis for critically ill patients may become self-fulfilling if life-sustaining treatment or resuscitation is subsequently withheld on the basis of that prediction. This paper outlines the epistemic and normative problems raised by self-fulfilling prophecies (SFPs) in intensive care. Where predictions affect outcome, it can be extremely difficult to ascertain the mortality rate for patients if all treatment were provided. SFPs may lead to an increase in mortality for cohorts of patients predicted to have poor prognosis, they may (...) lead doctors to feel causally responsible for the deaths of their patients, and they may compromise honest communication with patients and families about prognosis. However, I argue that the self-fulfilling prophecy is inevitable when life-sustaining treatment is withheld or withdrawn in the face of uncertainty. SFPs do not necessarily make treatment limitation decisions problematic. To minimize the effects of SFPs, it is essential to carefully collect and appraise evidence about prognosis. Doctors need to be honest with themselves and with patients and their families about uncertainty and the limits of knowledge. (shrink)
The discovery of exoplanets is a small part of the array of scientific arguments for and against the existence of extraterrestrial intelligence. Yet the recent stunning achievement of this program of observational astronomy has had a significant effect on scientific opinion and public interest. It also raises some key theological questions. New observing techniques are leading to the discovery of extrasolar planets daily. Earth-like planets outside of our Solar System can now be identified and in future years explored for signs (...) of life. This article maps the history of these discoveries and highlights some of the theological issues which are important to bring into dialogue with these scientific insights. (shrink)
There are not enough solid organs available to meet the needs of patients with organ failure. Thousands of patients every year die on the waiting lists for transplantation. Yet there is one currently available, underutilized, potential source of organs. Many patients die in intensive care following withdrawal of life-sustaining treatment whose organs could be used to save the lives of others. At present the majority of these organs go to waste.In this paper we consider and evaluate a range of ways (...) to improve the number and quality of organs available from this group of patients. Changes to consent arrangements (for example conscription of organs after death) or changes to organ donation practice could dramatically increase the numbers of organs available, though they would conflict with currently accepted norms governing transplantation.We argue that one alternative, Organ Donation Euthanasia, would be a rational improvement over current practice regarding withdrawal of life support. It would give individuals the greatest chance of being able to help others with their organs after death. It would increase patient autonomy. It would reduce the chance of suffering during the dying process. We argue that patients should be given the choice of whether and how they would like to donate their organs in the event of withdrawal of life support in intensive care.Continuing current transplantation practice comes at the cost of death and prolonged organ failure. We should seriously consider all of the alternatives. (shrink)
In the case of Re M, summarised in the paper by Julian Sheather, Justice Baker faced the difficult task of weighing up objectively whether or not it was in Mâs best interests to withdraw artificial feeding and to let her die.1 The judge concluded that M was ârecognisably aliveâ, and that the advantages of continued life outweighed the disadvantages. He compared her minimally conscious state favourably to that of a persistent vegetative state .2 It was clear that artificial feeding would (...) have been withdrawn if she had been in a PVS , but because she was in fact minimally conscious, the judge decided that treatment must continue. But does it make sense to treat MCS differently from PVS in this way? Is it better to be minimally conscious than unconscious? Similar questions have been raised before.3 In 2006, scientists reported results of sophisticated neuroimaging studies which suggested that some patients in persistent vegetative state , long thought to be unaware, had evidence of minimal consciousness.4 The question then was on the moral significance of this level of consciousness, and whether the presence of such evidence meant that treatment such as artificial nutrition must be continued.5 ,6There are several potential reasons why the presence of minimal consciousness might warrant continuing life-sustaining treatment. The first is that patients in minimally conscious state might have a better prognosis than those who are in PVS. There are relatively few studies …. (shrink)
This issue of the journal includes papers across both analytical and empirical schools within bioethics.In his feature article, ‘The kindest cut? Surgical castration, sex offenders and coercive offers’, John McMillan asks whether surgical castration can be ethically provided as medical treatment for sex offenders . While surgical castration has previously been available in a number of European countries, in recent years it has only been available in the Czech Republic and in Germany. The European Committee for the Prevention of Torture (...) has attacked the Czech and German governments for engaging in degrading treatments. McMillan focuses on the nature of the relationship between psychiatrist and the detainee. Is the option of surgical castration a non-coercive ‘offer’, or is the option of non-castration a coercive threat? For McMillan, the nature of the intent is important, but he argues that the Czech and German approaches to surgical castration are not necessarily coercive, and can be a component of ethically praiseworthy self-transformation.Responding to McMillan, Alan Wertheimer and Franklin Miller focus on the question of coercion . They argue that the offer of castration is only coercive if psychiatrists or the state threaten to violate sex-offenders’ rights, or forego an obligation to the prisoner if he declines castration. On their view, such offers are not coercive, though they note that this does not settle the key ethical questions.Jesper Ryberg and Thomas Petersen, by contrast, argue both that offers can be coercive and that coercive offers could be morally legitimate - where there is a significant societal benefit . They suggest …. (shrink)
In this commentary I assess the possible harms to a fetus with trisomy 18 of continued life. I argue that, although there is good reason to avoid subjecting infants to major surgery and prolonged intensive care where there is little chance of benefit, doctors should support and engage honestly with parents who decide to continue their pregnancies. We should ensure that infants with trisomy 18 have access to high quality palliative care.
In many forms of severe acute brain injury there is an early phase when prognosis is uncertain, followed later by physiological recovery and the possibility of more certain predictions of future impairment. There may be a window of opportunity for withdrawal of life support early, but if decisions are delayed there is the risk that the patient will survive with severe impairment. In this paper I focus on the example of neonatal encephalopathy and the question of the timing of prognostic (...) tests and decisions to continue or to withdraw life-sustaining treatment. Should testing be performed early or later; and how should parents decide what to do given the conflicting values at stake? I apply decision theory to the problem, using sensitivity analysis to assess how different features of the tests or different values would affect a decision to perform early or late prognostic testing. I draw some general conclusions from this model for decisions about the timing of testing in neonatal encephalopathy. Finally I consider possible solutions to the problem posed by the window of opportunity. Decision theory highlights the costs of uncertainty. This may prompt further research into improving prognostic tests. But it may also prompt us to reconsider our current attitudes towards the palliative care of newborn infants predicted to be severely impaired. (shrink)
Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because of inadequate resources has (...) seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the ‘social quality of life (sQOL)’ model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal ‘quality of life’ and Camosy's ‘sQOL’ should factor into these decisions, and I outline two practical proposals. (shrink)
This issue of the Journal of Medical Ethics features a special symposium on ‘elective ventilation’ . EV ) was originally described in the 1990s by doctors working in Exeter in the UK.1 At that time there was concern about the large shortfall in organs for transplantation. Patients could become organ donors if they were diagnosed as being brain dead, but this only ever occurred in patients on breathing machines in intensive care who developed signs of brainstem failure. Doctors wondered if (...) there were patients dying outside intensive care who, if they were ventilated, could become brain dead and hence eligible to donate their organs. They embarked on a process of identifying patients who were dying who would not normally be taken to intensive care because their prognosis was judged to be too poor, and then ‘electing’ to insert breathing tubes when they stopped breathing.1 With the consent of family members the patients were supported in intensive care until they were diagnosed as having signs of brain death, or until the family and doctors together judged that this was unlikely to occur.1 The Exeter team saw a 50% increase in their numbers of organs for transplantation.Box 1 Definition of elective ventilation Elective ventilation is the provision to a patient of intensive medical treatment with the sole purpose of facilitating organ donation, in the absence of an expected medical benefit.EV was a controversial practice at the time. There were a number of papers written from points of view defending2 ,3 and criticising it.4 A Department of Health guideline in 1994 concluded that EV was not in the best interests of patients and was therefore unlawful5; subsequently, the practice effectively ceased.2 However, debate about EV has not …. (shrink)
Harold Jaffe argues that we should adopt opt-out testing for HIV. There are paternalistic and utilitarian arguments for such an approach. In this commentary I draw attention to some similarities between his arguments and debates about opt-out systems of organ donation. I argue that the status quo bias provides both part of the reason that opt-out approaches work, and an explanation for why such approaches are sometimes resisted.
What role should legislation or policy play in avoiding the complications of in-vitro fertilization? In this article, we focus on single versus double embryo transfer, and assess three arguments in favour of mandatory single embryo transfer: risks to the mother, risks to resultant children, and costs to society. We highlight significant ethical concerns about each of these. Reproductive autonomy and non-paternalism are strong enough to outweigh the health concerns for the woman. Complications due to non-identity cast doubt on the extent (...) to which children are harmed. Twinning may offer an overall benefit rather than burden to society. Finally, including the future health costs for children in reproductive policy is inconsistent with other decisions. We conclude that mandatory single embryo transfer is not justified and that a number of countries should reconsider their current embryo transfer policy. (shrink)
End-of-life decision-making is controversial. There are different views about when it is appropriate to limit life-sustaining treatment, and about what palliative options are permissible. One approach to decisions of this nature sees consensus as crucial. Decisions to limit treatment are made only if all or a majority of caregivers agree. We argue, however, that it is a mistake to require professional consensus in end-of-life decisions. In the first part of the article we explore practical, ethical, and legal factors that support (...) agreement. We analyse subjective and objective accounts of moral reasoning: accord is neither necessary nor sufficient for decisions. We propose an alternative norm for decisions – that of ‘professional dissensus’. In the final part of the article we address the role of agreement in end-of-life policy. Such guidelines can ethically be based on dissensus rather than consensus. Disagreement is not always a bad thing. (shrink)
The actions of pregnant women can cause harm to their future children. However, even if the possible harm is serious and likely to occur, the law will generally not intervene. A pregnant woman is an autonomous person who is entitled to make her own decisions. A fetus in-utero has no legal right to protection. In striking contrast, the child, if born alive, may sue for injury in-utero; and the child is entitled to be protected by being removed from her parents (...) if necessary for her protection. Indeed, there is a legal obligation for health professionals to report suspected harm, and for authorities to protect the child's wellbeing. We ask whether such contradictory responses are justified. Should the law intervene where a pregnant woman's actions risk serious and preventable fetal injury? The argument for legal intervention to protect a fetus is sometimes linked to the concept of ‘fetal personhood’ and the moral status of the fetus. In this article we will suggest that even if the fetus is not regarded as a separate person, and does not have the legal or moral status of a child, indeed, even if the fetus is regarded as having no legal or moral status, there is an ethical and legal case for intervening to prevent serious harm to a future child. We examine the arguments for and against intervention on behalf of the future child, drawing on the example of excessive maternal alcohol intake. (shrink)
Parents who are facing decisions about life-sustaining treatment for their seriously ill or dying child are supported by their child's doctors and nurses. They also frequently seek other information sources to help them deal with the medical and ethical questions that arise. This might include written or web-based information. As part of a project involving the development of such a resource to support parents facing difficult decisions, some ethical questions emerged. Should this information be presented in a strictly neutral fashion? (...) Is it problematic if narratives, arguments or perspectives appear to favour stopping over continuing life-sustaining treatment? Similar questions might arise with written materials about decisions for adults, or for other ethically contentious decisions. This paper explores the meaning of ‘balance’ in information provision, focusing particularly on written information about life-sustaining treatment for children. We contrast the norm of non-directiveness in genetic counselling with the shared decision-making model often endorsed in end-of-life care. We review evidence that parents do not find neutrality from medical professionals helpful in discussions. We argue that balance in written information must be understood in the light of the aim of the document, the most common situation in which it will be used, and any existing biases. We conclude with four important strategies for ensuring that non-neutral information is nevertheless ethically appropriate. (shrink)
It is sometimes argued that practices such as organ-selling should be prohibited because they are demeaning to the individuals involved. In this article the plausibility of such an argument is questioned. I will examine what it means to demean or be demeaned, and suggest that the mere fact that an individual is demeaning themself does not provide sufficient justification for legal prohibition. On the contrary, such laws might be argued to be demeaning.
Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when it is (...) justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)
If a disabled newborn infant dies, her parents may be able to conceive another child without impairment. This is sometimes referred to as 'replacement'. Some philosophers have argued that replacement provides a strong reason for disabled newborns to be killed or allowed to die. In this paper I focus on the case for replacement as it relates to decisions about life support in newborn intensive care. I argue (following Jeff McMahan) that the impersonal reason to replace is weak and easily (...) outweighed. I assess and reject several possible ways in which the impersonal reason to replace could be defended. I then address an alternative justification for replacement - as an individual-affecting benefit. The strongest justification for replacement may be the interests of parents. In the latter part of the paper I look at a related question. What role should replacement play in decisions about the funding of newborn intensive care? (shrink)
Huang and colleagues provide some intriguing insights into the attitudes about end of life care of practising Taiwanese neonatal doctors and nurses.1 There are some similarities with surveys from other parts of the world. Most Taiwanese neonatologists and nurses agreed that it was potentially appropriate to withhold or limit treatment for infants who were dying. A very high proportion was opposed to active euthanasia of such infants. But there were also some striking differences. Only 21% of Taiwanese doctors ‘agreed’ with (...) withdrawal of mechanical ventilation for dying newborn infants. This proportion is lower than reported in any European country.2 More than 90% of neonatologists surveyed in the UK, the USA, The Netherlands and Sweden found withdrawal of mechanical ventilation acceptable.2 ,3 Taiwanese doctors also seemed reluctant to give analgesia or sedatives to such infants, with almost 60% disagreeing with their use in dying infants where there was a risk of hastening death.1 In contrast, two-thirds or more of European neonatologists thought this was acceptable .2The results of the survey of Huang et al highlight three beliefs about end-of-life care that are widespread, but all of which are seriously mistaken1. None are new, but …. (shrink)
In clinical practice, and in the medical literature, severe congenital malformations such as trisomy 18, anencephaly, and renal agenesis are frequently referred to as ‘lethal’ or as ‘incompatible with life’. However, there is no agreement about a definition of lethal malformations, nor which conditions should be included in this category. Review of outcomes for malformations commonly designated ‘lethal’ reveals that prolonged survival is possible, even if rare. This article analyses the concept of lethal malformations and compares it to the problematic (...) concept of ‘futility’. We recommend avoiding the term ‘lethal’ and suggest that counseling should focus on salient prognostic features instead. For conditions with a high chance of early death or profound impairment in survivors despite treatment, perinatal and neonatal palliative care would be ethical. However, active obstetric and neonatal management, if desired, may also sometimes be appropriate. (shrink)
Clinical guidelines summarise available evidence on medical treatment, and provide recommendations about the most effective and cost-effective options for patients with a given condition. However, sometimes patients do not desire the best available treatment. Should doctors in a publicly-funded healthcare system ever provide sub-optimal medical treatment? On one view, it would be wrong to do so, since this would violate the ethical principle of beneficence, and predictably lead to harm for patients. It would also, potentially, be a misuse of finite (...) health resources. In this paper, we argue in favour of permitting sub-optimal choices on the basis of value pluralism, uncertainty, patient autonomy and responsibility. There are diverse views about how to evaluate treatment options, and patients’ right to self-determination and taking responsibility for their own lives should be respected. We introduce the concept of cost-equivalence, as a way of defining the boundaries of permissible pluralism in publicly-funded healthcare systems. As well as providing the most effective, available treatment for a given condition, publicly-funded healthcare systems should provide reasonable suboptimal medical treatments that are equivalent in cost to the optimal treatment. We identify four forms of cost-equivalence, and assess the implications of CE for decision-making. We evaluate and reject counterarguments to CE. Finally, we assess the relevance of CE for other treatment decisions including requests for potentially superior treatment. (shrink)