Journal of Medical Ethics

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The concise argument

Tue, 2020-01-14 14:35

This post-holiday edition of the JME brings together a number of papers, covering a range of methodologies, surveys on public opinion, the application of developmental neuroscience, comparative risk/benefit questionnaires, scoping reviews and analysis of guidance and health policy, alongside what might be seen as more traditional medical ethics, analysing concepts and advancing arguments. This range of methodologies is suggestive of the kind of discipline that bioethics has become, and how a wealth of disciplinary and methodological perspectives is needed to address the numerous challenges that face modern health systems.

The Editors’ Choice article by Derbyshire and Brockman1 considers the contentious issue of fetal pain, and applies developmental neuroscience to the question of at what stage, if at all, a fetus can feel pain? The authors argue that new evidence suggests we cannot rule out that foetuses might experience pain before 24 weeks. The authors define pain as...

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Reconsidering fetal pain

Tue, 2020-01-14 14:35

Fetal pain has long been a contentious issue, in large part because fetal pain is often cited as a reason to restrict access to termination of pregnancy or abortion. We have divergent views regarding the morality of abortion, but have come together to address the evidence for fetal pain. Most reports on the possibility of fetal pain have focused on developmental neuroscience. Reports often suggest that the cortex and intact thalamocortical tracts are necessary for pain experience. Given that the cortex only becomes functional and the tracts only develop after 24 weeks, many reports rule out fetal pain until the final trimester. Here, more recent evidence calling into question the necessity of the cortex for pain and demonstrating functional thalamic connectivity into the subplate is used to argue that the neuroscience cannot definitively rule out fetal pain before 24 weeks. We consider the possibility that the mere experience of pain, without the capacity for self reflection, is morally significant. We believe that fetal pain does not have to be equivalent to a mature adult human experience to matter morally, and so fetal pain might be considered as part of a humane approach to abortion.

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Worth living or worth dying? The views of the general public about allowing disabled children to die

Tue, 2020-01-14 14:35
Background

Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.

Methods

An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.

Results

One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.

Conclusion

Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice.

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Is 'best interests the right standard in cases like that of Charlie Gard?

Tue, 2020-01-14 14:35

Savulescu and colleagues have provided interesting insights into how the UK public view the ‘best interests’ of children like Charlie Gard. But is best interests the right standard for evaluating these types of cases? In the USA, both clinical decisions and legal judgments tend to follow the ‘harm principle’, which holds that parental choices for their children should prevail unless their decisions subject the child to avoidable harm. The case of Charlie Gard, and others like it, show how the USA and the UK have strikingly different approaches for making decisions about the treatment of severely disabled children.

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Deciding when a life is not worth living: Animperative to measure what matters

Tue, 2020-01-14 14:35

As a neonatal neurologist, I serve families facing tragic decisions in which they must balance trade-offs between death and life with profound disability. I often find myself in complex discussions about future outcome, in which families sort through in real-time what information they value most in making such a choice. Will he laugh? Will he be in pain? Will he know how much he’s loved? In this month’s feature article, Brick et al share the results of an online survey aimed at assessing public views on when a life is not worth living, in an effort to inform ongoing legal and clinical debates about withdrawal of life-sustaining treatment for children. These findings raise important questions about how we define and measure outcomes that matter to parents as they make these tragic decisions.

It is challenging to interpret these findings in the absence of context of how decision-making for infants...

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Public views about quality of life and treatment withdrawal in infants: limitations and directions for future research

Tue, 2020-01-14 14:35

Work done within the realm of what is sometimes called ‘descriptive ethics’ brings two questions readily to mind: How can empirical findings, in general, inform normative debates? and How can these empirical findings, in particular, inform the normative debate at hand? Brick et al1 confront these questions in their novel investigation of public views about lives worth living and the permissibility of withdrawing life-sustaining treatment from critically ill infants. Mindful of the is-ought gap, the authors suggest modestly that their data ‘may be useful when constructing guidelines for clinical practice’. In this commentary, I consider some potential limitations on the generalisability of these data in the context of policy and clinical practice, limitations which may in turn serve as directions for future empirical research.

The authors’ study presented participants six case scenarios, five of which involved the possibility of withdrawing life-sustaining treatment from critically ill infants. The...

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Relationships help make life worth living

Tue, 2020-01-14 14:35

Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey data to inform public policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity.

The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of...

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The relational threshold: a life that is valued, or a life of value?

Tue, 2020-01-14 14:35

The four thoughtful commentaries on our feature article draw out interesting empirical and normative questions. The aim of our study was to examine the views of a sample of the general public about a set of cases of disputed treatment for severely impaired infants.1 We compared those views with legal determinations that treatment was or was not in the infants’ best interests, and with some published ethical frameworks for decisions. We deliberately did not draw explicit ethical conclusions from our survey findings, both because of the acknowledged limitations of survey methodology, and because survey conclusions cannot, in themselves, yield answers about what the right threshold should be for providing or withholding treatment.2

In this brief response, we are going to address head-on the important ethical question raised within our survey – when life is worth living for an infant. We follow-up on the suggestion of...

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Revising ethical guidance for the evaluation of programmes and interventions not initiated by researchers

Tue, 2020-01-14 14:35

Public health and service delivery programmes, interventions and policies (collectively, ‘programmes’) are typically developed and implemented for the primary purpose of effecting change rather than generating knowledge. Nonetheless, evaluations of these programmes may produce valuable learning that helps determine effectiveness and costs as well as informing design and implementation of future programmes. Such studies might be termed ‘opportunistic evaluations’, since they are responsive to emergent opportunities rather than being studies of interventions that are initiated or designed by researchers. However, current ethical guidance and registration procedures make little allowance for scenarios where researchers have played no role in the development or implementation of a programme, but nevertheless plan to conduct a prospective evaluation. We explore the limitations of the guidance and procedures with respect to opportunistic evaluations, providing a number of examples. We propose that one key missing distinction in current guidance is moral responsibility: researchers can only be held accountable for those aspects of a study over which they have control. We argue that requiring researchers to justify an intervention, programme or policy that would occur regardless of their involvement prevents or hinders research in the public interest without providing any further protections to research participants. We recommend that trial consent and ethics procedures allow for a clear separation of responsibilities for the intervention and the evaluation.

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Ottawa Statement does not impede randomised evaluation of government health programmes

Tue, 2020-01-14 14:35

In this issue of JME, Watson et al call for research evaluation of government health programmes and identify ethical guidance, including the Ottawa Statement on the ethical design and conduct of cluster randomised trials, as a hindrance. While cluster randomised trials of health programmes as a whole should be evaluated by research ethics committees (RECs), Watson et al argue that the health programme per se is not within the researcher’s control or responsibility and, thus, is out of scope for ethics review. We argue that this view is wrong. The scope of research ethics review is not defined by researcher control or responsibility, but rather by the protection of research participants. And the randomised evaluation of health programmes impacts the liberty and welfare interests of participants insofar as they may be exposed to a harmful programme or denied access to a beneficial one. Further, Watson et al’s claim that ‘study programmes ... would occur whether or not there were any ... research activities’ is incorrect in the case of cluster randomised designs. In a cluster randomised trial, the government does not implement a programme as usual. Rather, researchers collaborate with the government to randomise clusters to intervention or control conditions in order to rigorously evaluate the programme. As a result, equipoise issues are triggered that must be addressed by the REC.

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Randomised evaluation of government health programmes does present a challenge to standard research ethics frameworks

Tue, 2020-01-14 14:35

In a recent issue of Journal of Medical Ethics (JME), we discussed the ethical review of evaluations of interventions that would occur whether or not the evaluation was taking place. We concluded that standard research ethics frameworks including the Ottawa Statement, which requires justification for all aspects of an intervention and its roll-out, were a poor guide in this area. We proposed that a consideration of researcher responsibility, based on the consequences of the research taking place, would be a more appropriate way delineate the scope of research ethics review. Weijer and Taljaard present a counterargument to our proposal, which we address in this reply. They claim that a focus on researcher responsibility will weaken the protection of research participants and link it to ‘unethical research’ and a ‘government experimenting on its own people’. However, the moral responsibility of researchers is defined in terms of the consequences of the research on human welfare and harm, not in opposition to it. Weijer and Taljaard argue that researchers must justify what they are studying whether or not they have any control over it and that governments must justify their programmes, including by demonstrating equipoise, to a research ethics committee if they implement them in a randomised way. We strongly disagree that this is a defensible way to define the scope of research ethics review and argue that this provides no further protections to research participants beyond what we propose, but places a potential barrier to learning from government programmes.

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Training clinical ethics committee members between 1992 and 2017: systematic scoping review

Tue, 2020-01-14 14:35
Introduction

Clinical ethics committees (CECs) support and enhance communication and complex decision making, educate healthcare professionals and the public on ethical matters and maintain standards of care. However, a consistent approach to training members of CECs is lacking. A systematic scoping review was conducted to evaluate prevailing CEC training curricula to guide the design of an evidence-based approach.

Methods

Arksey and O’Malley’s methodological framework for conducting scoping reviews was used to evaluate prevailing accounts of CEC training published in six databases. Braun and Clarke’s thematic analysis approach was adopted to thematically analyse data across different healthcare and educational settings.

Results

7370 abstracts were identified, 92 full-text articles were reviewed and 55 articles were thematically analysed to reveal four themes: the design, pedagogy, content and assessment of CEC curricula.

Conclusion

Few curricula employ consistent approaches to training. Many programmes fail to provide CEC trainees with sufficient knowledge, skills and experience to meet required competencies. Most programmes do not inculcate prevailing sociocultural, research, clinical and educational considerations into training processes nor provide longitudinal support for CEC trainees. Most CEC training programmes are not supported by host institutions threatening the sustainability of the programme and compromising effective assessment and longitudinal support of CEC trainees. While further reviews are required, this review underlines the need for host organisations to support and oversee a socioculturally appropriate ethically sensitive, clinically relevant longitudinal training, assessment and support process for CEC trainees if CECs are to meet their roles effectively.

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Frequently overlooked realistic moral bioenhancement interventions

Tue, 2020-01-14 14:35

Many supporters of ‘moral bioenhancement’ (MBE), the use of biomedical interventions for moral improvement, have been criticised for having unrealistic proposals. The interventions they suggest have often been called infeasible and their implementation plans vague or unethical. I dispute these criticisms by showing that various interventions to implement MBE are practically and ethically feasible enough to warrant serious consideration. Such interventions include transcranial direct current stimulation over the medial and dorsolateral prefrontal cortex, as well as supplementation with lithium and omega-3. Considering their efficacy and feasibility, it is strange that these interventions have rarely been proposed or discussed as MBE. I review evidence that each of those interventions can reduce antisocial behaviour, reduce racial bias, increase executive function or increase prosocial traits like fairness and altruism. I then specify and defend realistic, ethically permissible ways to implement these interventions, especially for violent offenders and public servants—the former as rehabilitation and the latter to meet the high standards of their occupations. These interventions could be given to violent offenders in exchange for a reduced sentence or compulsorily in some cases. Potential intervention methods for non-prisoners include increasing the USDA-recommended dose of omega-3, encouraging food companies to supplement their products with omega-3 or trace lithium, requiring MBE for employment as a police officer or political leader, and insurance companies providing discounts for undergoing MBE. In some reasonably limited form, using these interventions may be a good first step to implement the project of MBE.

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Palliative opioid use, palliative sedation and euthanasia: reaffirming the distinction

Tue, 2020-01-14 14:35

We read with interest the extended essay published from Riisfeldt and are encouraged by an empirical ethics article which attempts to ground theory and its claims in the real world. However, such attempts also have real-world consequences. We are concerned to read the paper’s conclusion that clinical evidence weakens the distinction between euthanasia and normal palliative care prescribing. This is important. Globally, the most significant barrier to adequate symptom control in people with life-limiting illness is poor access to opioid analgesia. Opiophobia makes clinicians reluctant to prescribe and their patients reluctant to take opioids that might provide significant improvements in quality of life. We argue that the evidence base for the safety of opioid prescribing is broader than that presented, restricting the search to palliative care literature produces significant bias as safety experience and literature for opioids and sedatives exists in many fields. This is not acknowledged in the synthesis presented. By considering additional evidence, we reject the need for agnosticism and reaffirm that palliative opioid prescribing is safe. Second, palliative sedation in a clinical context is a poorly defined concept covering multiple interventions and treatment intentions. We detail these and show that continuous deep palliative sedation (CDPS) is a specific practice that remains controversial globally and is not considered routine practice. Rejecting agnosticism towards opioids and excluding CDPS from the definition of routine care allows the rejection of Riisfeldt’s headline conclusion. On these grounds, we reaffirm the important distinction between palliative care prescribing and euthanasia in practice.

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Ethical end-of-life palliative care: response to Riisfeldt

Tue, 2020-01-14 14:35

In a recent article, 1 Riisfeldt attempts to show that the principle of double effect (PDE) is unsound as an ethical principle and problematic in its application to palliative opioid and sedative use in end-of-life care. Specifically, he claims that (1) routine, non-lethal opioid and sedative administration may be "intrinsically bad" by PDE’s standards, (2) continuous deep palliative sedation (or "terminal sedation") should be treated as a bad effect akin to death for purposes of PDE, (3) PDE cannot coherently be applied in cases where death "indirectly" furthers an agent’s intended end of pain relief via medically appropriate palliative care, and (4) application of PDE requires sacrificing common beliefs about the sanctity of human life. I respond by showing that Riisfeldt’s understanding of PDE is seriously mistaken: he misattributes Kantian and Millian reasoning to the principle and conflates acts’ intrinsic properties with their effects. Further, a corrected understanding of PDE can address Riisfeldt’s case-specific objections.

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Continuing the conversation about medical assistance in dying

Tue, 2020-01-14 14:35

In their summary and critique, Gamble, Gamble, and Pruski mischaracterise both the central arguments and the primary objectives of our original paper. Our paper does not provide an ethical justification for paediatric Medical Assistance in Dying (MAID) by comparing it with other end of life care options. In fact, it does not offer arguments about the permissibility of MAID for capable young people at all. Instead, our paper focuses on the ethical questions that emerged as we worked to develop a policy for responding to MAID requests at our tertiary paediatric institution. Following the Supreme Court of Canada’s recent decriminalisation of MAID, our hospital needed to answer immediate on-the-ground questions such as: ‘What are we going to do if an 18-year-old patient in our care requested MAID today, as is now their legal right? How should we protect their privacy? What is the best way to ensure patients are informed when making these decisions?’ On these important questions, Gamble, Gamble, and Pruskiare silent.

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Distinction between euthanasia and palliative sedation is clear-cut

Tue, 2020-01-14 14:35

This article is a response to Thomas David Riisfeldt’s paper entitled ‘Weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation’. It is shown that as far as euthanasia and palliative sedation are concerned, Riisfeldt has not established that a common ground, or a similarity, between the two is the relief of suffering. Quite the contrary, this is not characteristic of euthanasia, neither by definition nor from a clinical point of view. Hence, the argument hinges on a conceptually and empirically erroneous premise and is accordingly a non-starter.

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Strengthening the ethical distinction between euthanasia, palliative opioid use and palliative sedation

Tue, 2020-01-14 14:35
Introduction

Thomas Riisfeldt’s essay1 is a valuable contribution to the literature on palliative sedation, appropriately titrated administration of opioids (ATAOs) and euthanasia. In this response, I will not deal with the author’s empirical claim about the relationship between opioid use, palliative sedation and survival time. Rather, I will briefly critique the author’s discussion of doctrine of double effect  (DDE) and its application to palliative sedation and opioid use at the end of life. That is, I will focus on the ethical claims made by the author. Riisfeldt argues that DDE is incompatible with both Kantian deontology and Millian consequentialism. Yet, I will argue that the DDE is coherent and defensible when interpreted from the perspective of the philosophy of Thomas Aquinas, the theorist who first proposed the doctrine. I will also argue that Riisfeldt mischaracterises ATAOs and palliative sedation as procedures that hasten death as a...

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A response to critics: weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation

Tue, 2020-01-14 14:35

My essay ‘Weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation’ has recently generated some critique which I will attempt to address in this response. Regarding the empirical question of whether palliative opioid and sedative use shorten survival time, Schofield et al raise the three concerns that my literature review contains a cherry-picking bias through focusing solely on the palliative care population, that continuous deep palliative sedation falls beyond the scope of routine palliative care, and that my research may contribute to opiophobia and be harmful to palliative care provision globally. Materstvedt argues that euthanasia ‘ends’ rather than ‘relieves’ suffering and is not a treatment, and that the arguments in my essay are therefore predicated on a ‘category mistake’ and are a non-starter. Symons and Giebel both raise the concern that my Kantian and Millian interpretation of the Doctrine of Double Effect is anachronistic, and that when interpreted from the contemporaneous perspective of Aquinas it is a sound ethical principle. Giebel also argues that palliative opioid and sedative use do meet the Doctrine of Double Effect’s four criteria on this Thomistic account, and that it does not contradict the Doctrine of the Sanctity of Human Life. In this response I will explore and defend against most of these claims, in doing so clarifying my original argument that the empirical and ethical differences between palliative opioid/sedative use and euthanasia may not be as significant as often believed, thereby advancing the case for euthanasia.

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In response to an argument against penile transplantation

Tue, 2020-01-14 14:35

Moodley and Rennie’s paper arguing against penile transplantation stated out of context arguments and wrongly quoted statements. The cost of penile transplantation is much less than portrayed. The burden of cases is much less than is communicated. The men on our penis transplantation programme represent the poorest of the poor and are one of the most discriminated against groups of humans on earth. The false hope said to be created by Moodley is indeed not false hope at all as there is a real possibility that most patients on our waiting list may be transplanted. Moodley argues that government has, in the context of penile transplantation, no duty to cure those who lost a penis after ritual circumcision, but only an obligation to prevent this from happening. A ‘yuk’ reaction, similarly described in facial transplantation, may be present in colleagues arguing against penile transplantation.

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