On 24 July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion. Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. Life support was subsequently withdrawn and Charlie died on 28 July 2017.Box 1 ### Case summary and timeline21–23 Charlie Gard was born at full term, apparently healthy, in August 2016. At a few weeks of age his parents (...) noticed early signs of muscle weakness. At 2 months of age, he was admitted to Great Ormond Street Hospital with poor feeding, failure to thrive and respiratory failure. He was admitted to intensive care, where investigations led to the diagnosis of a rare severe mitochondrial disorder – infantile onset encephalomyopathic mitochondrial DNA depletion syndrome. The specific genetic form of MDDS in Charlie Gard had previously been reported in approximately 15 infants, with typical clinical features including early onset, rapid progression and death in infancy.24 By that point, Charlie was paralysed and unable to breathe without respiratory support. He was found to have congenital deafness, and his heart, liver and kidneys were affected by the disorder. Doctors felt that Charlie’s prognosis was extremely poor. In early 2017, Charlie’s parents identified an experimental treatment, previously used in a different form of MDDS, which they hoped might benefit Charlie. In mouse models of a myopathic form of MDDS, early supplementation with deoxypryrimidine nucleosides apparently bypasses the genetic defect and leads to a reduction in the biochemical defect and in the severity of the clinical phenotype.25 26 Doctors at GOSH initially planned to use nucleoside treatment in Charlie, but in January he developed evidence of electrical seizures, and clinicians became convinced that treatment, both continued intensive care and the requested …. (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)
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)
When we applied for the editorship of the JME 7 years ago, we said that we considered the JME to be the most important journal in medicine. The most profound questions that health professionals face are not scientific or technical, but ethical. Our enormous scientific and medical progress already outstrips our capability to provide treatment. Life can be prolonged at enormous cost, sometimes far beyond the point that the individual appears to be gaining a net benefit from that life. Science (...) can tell us how to achieve something, but it cannot tell us whether we should achieve that end—whether it is good. For that, we need ethics. Ethics grows in importance as our technology creates new possibilities. Where there are no options, there are no ethical questions. However, once there are options, there arise pressing questions about whether to pursue them. We require values and principles to decide how to use medicine and science. During the last 7 years, issues like the creation of brain organoids, human non-human chimeras, mitochondrial transfer, gene editing of embryos and in vitro gametogenesis have grown in prominence. These raise deep questions about moral status and how it should be determined, the limits of modification of humans, and what is good in life. As editors of the JME, we are proud of our small contribution to thinking about these challenges. We are grateful to the hard work of our associate editors and administrative staff, but there is still much more to do. During our term as editors, we have published papers from diverse perspectives, on a wide range of topics. We have seen vigorous debate within the pages of the journal and have often sought to deliberately encourage that debate …. (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)
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)
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)
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)
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.
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)
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)
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)
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 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)
The 2016 outbreak of the Zika arbovirus was associated with large numbers of cases of the newly-recognised Congenital Zika Syndrome. This novel teratogenic epidemic raises significant ethical and practical issues. Many of these arise from strategies used to avoid cases of CZS, with contraception in particular being one proposed strategy that is atypical in epidemic control. Using contraception to reduce the burden of CZS has an ethical complication: interventions that impact the timing of conception alter which people will exist in (...) the future. This so-called ‘non-identity problem’ potentially has significant social justice implications for evaluating contraception, that may affect our prioritisation of interventions to tackle Zika. This paper combines ethical analysis of the non-identity problem with empirical data from a novel survey about the general public's moral intuitions. The ethical analysis examines different perspectives on the non-identity problem, and their implications for using contraception in response to Zika. The empirical section reports the results of an online survey of 93 members of the US general public exploring their intuitions about the non-identity problem in the context of the Zika epidemic. Respondents indicated a general preference for a person-affecting intervention over an impersonal intervention. However, their responses did not appear to be strongly influenced by the non-identity problem. Despite its potential philosophical significance, we conclude from both theoretical considerations and analysis of the attitudes of the community that the non-identity problem should not affect how we prioritise contraception relative to other interventions to avoid CZS. (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.
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)
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)
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.
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)
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)
Dr Dominic Wilkinson, Department of Neonatal Medicine, University of Adelaide, 72 King William Rd, North Adelaide, South Australia 5006, Australia; firstname.lastname@example.org, email@example.comIs it good for there to be both males and females of our species? This question seems highly fanciful, and a long way from the ethical questions that health professionals face on a daily basis. However, philosophical thought experiments like this sometimes help to clarify questions that are of much broader relevance. In this case, the prospect of an all-female (...) planet focuses our attention on what it means to be normal or abnormal, on the nature and implications of the different behaviour of men and women, on the political ramifications and resonances of bioethical debate, and on our obligations to future generations.The possibility of an all-female world has featured in recent debates about enhancement—the use of medical technologies to enhance the capacities and characteristics of humans beyond what is considered normal. Philosopher Rob Sparrow has provocatively suggested that since females have a longer lifespan and are able to bear children, supporters of enhancement should support the deliberate selection of only female …. (shrink)