The ethics of crowdfunding in paediatric neurology.

In the last decade, there has been a dramatic increase in the number of families resorting to internet-based public appeals to fund access to novel, highly expensive, or experimental therapies for rare disorders. Medical crowdfunding may provide a means to fund treatments or interventions, but it raises individual and societal ethical questions. In this review, we consider the ethical challenges crowdfunding poses in paediatric neurology, drawing on the example of gene therapy for spinal muscular atrophy. We discuss physician responsibilities, and how neurologists should respond to crowdfunding that they encounter in clinical practice. We also briefly consider actions that can be taken by clinicians, charities, and crowdfunding websites to reduce harms. The best way to mitigate these harms may be to target the high costs and restrictive criteria that limit access to many novel treatments, and to optimize treatment utility, for instance by newborn screening. WHAT THIS PAPER ADDS: Crowdfunding is a social phenomenon arising from families' inability to access desired treatment. Treatments sought by crowdfunding range from those that are clearly beneficial (but unaffordable) to those that would be ineffective and potentially harmful. Crowdfunding carries a range of harms and risks to families and children and has wider social impact.

Frailty Triage: Is Rationing Intensive Medical Treatment on the Grounds of Frailty Ethical?

In early 2020, a number of countries developed and published intensive care triage guidelines for the pandemic. Several of those guidelines, especially in the UK, encouraged the explicit assessment of clinical frailty as part of triage. Frailty is relevant to resource allocation in at least three separate ways, through its impact on probability of survival, longevity and quality of life (though not a fourth-length of intensive care stay). I review and reject claims that frailty-based triage would represent unjust discrimination on the grounds of age or disability. I outline three important steps to improve the ethical incorporation of frailty into triage. Triage criteria (ie frailty) should be assessed consistently in all patients referred to the intensive care unit. Guidelines must make explicit the ethical basis for the triage decision. This can then be applied, using the concept of triage equivalence, to other (non-frail) patients referred to intensive care.

A conscious choice: Is it ethical to aim for unconsciousness at the end of life?

One of the most commonly referenced ethical principles when it comes to the management of dying patients is the doctrine of double effect (DDE). The DDE affirms that it is acceptable to cause side effects (e.g. respiratory depression) as a consequence of symptom-focused treatment. Much discussion of the ethics of end of life care focuses on the question of whether actions (or omissions) would hasten (or cause) death, and whether that is permissible. However, there is a separate question about the permissibility of hastening or causing unconsciousness in dying patients. Some authors have argued that the DDE would not permit end of life care that directly aims to render the patient unconscious. The claim is that consciousness is an objective human good and therefore doctors should not intentionally (and permanently) suppress it. Three types of end of life care (EOLC) practices will be explored in this article. The first is symptom-based management (e.g. analgesia); the second is proportional terminal sedation as a means of relieving suffering (also referred to as palliative sedation or continuous deep sedation); and finally, deliberate and rapid sedation to unconsciousness until death (a practice we call terminal anaesthesia in this paper). After examining the common arguments for the various types of symptom-based management and sedation, we apply the DDE to the latter two types of EOLC practices. We argue that aiming at unconsciousness, contrary to some claims, can be morally good or at least morally neutral in some dying patients.

Ethical factors determining ECMO allocation during the COVID-19 pandemic.

BACKGROUND: ECMO is a particularly scarce resource during the COVID-19 pandemic. Its allocation involves ethical considerations that may be different to usual times. There is limited pre-pandemic literature on the ethical factors that ECMO physicians consider during ECMO allocation. During the pandemic, there has been relatively little professional guidance specifically relating to ethics and ECMO allocation; although there has been active ethical debate about allocation of other critical care resources. We report the results of a small international exploratory survey of ECMO clinicians' views on different patient factors in ECMO decision-making prior to and during the COVID-19 pandemic. We then outline current ethical decision procedures and recommendations for rationing life-sustaining treatment during the COVID-19 pandemic, and examine the extent to which current guidelines for ECMO allocation (and reported practice) adhere to these ethical guidelines and recommendations. METHODS: An online survey was performed with responses recorded between mid May and mid August 2020. Participants (n = 48) were sourced from the ECMOCard study group-an international group of experts (n = 120) taking part in a prospective international study of ECMO and intensive care for patients during the COVID-19 pandemic. The survey compared the extent to which certain ethical factors involved in ECMO resource allocation were considered prior to and during the pandemic. RESULTS: When initiating ECMO during the pandemic, compared to usual times, participants reported giving more ethical weight to the benefit of ECMO to other patients not yet admitted as opposed to those already receiving ECMO, (p < 0.001). If a full unit were referred a good candidate for ECMO, participants were more likely during the pandemic to consider discontinuing ECMO from a current patient with low chance of survival (53% during pandemic vs. 33% prior p = 0.002). If the clinical team recommends that ECMO should cease, but family do not agree, the majority of participants indicated that they would continue treatment, both in usual circumstances (67%) and during the pandemic (56%). CONCLUSIONS: We found differences during the COVID-19 pandemic in prioritisation of several ethical factors in the context of ECMO allocation. The ethical principles prioritised by survey participants were largely consistent with ECMO allocation guidelines, current ethical decision procedures and recommendations for allocation of life-sustaining treatment during the COVID-19 pandemic.

Withholding and withdrawing life-sustaining treatment in a patient's best interests: Australian judicial deliberations.

Intractable disputes about withholding and withdrawing life-sustaining treatment from adults who lack capacity are rare but challenging. Judicial resolution may be needed in some of these cases. A central concept for judicial (and clinical) decision making in this area is a patient's "best interests". Yet what this term means is contested. There is an emerging Supreme Court jurisprudence that sheds light on when life-sustaining treatment will, or will not, be judged to be in a patient's best interests. Treatment that is either futile or overly burdensome is not in a patient's best interests. Although courts will consider patient and family wishes, they have generally deferred to the views of medical practitioners about treatment decisions.

Incorporating parental values in complex paediatric and perinatal decisions.

Incorporating parental values in complex medical decisions for young children is important but challenging. In this Review, we explore what it means to incorporate parental values in complex paediatric and perinatal decisions. We provide a narrative overview of the paediatric, ethics, and medical decision-making literature, focusing on value-based and ethically complex decisions for children who are too young to express their own preferences. We explain key concepts and definitions, discuss paediatric-specific features, reflect on challenges in learning and expressing values for both parents and health-care providers, and provide recommendations for clinical practice. Decisional values are informed by global and external values and could relate to the child, the parents, and the whole family. These values should inform preferences and assure value-congruent choices. Additionally, parents might hold various meta values on the process of decision making itself. Complex decisions for young children are emotionally taxing, ethically difficult, and often surrounded by uncertainty. These contextual factors make it more likely that values and preferences are initially absent or unstable and need to be constructed or stabilised. Health-care professionals and parents should work together to construct and clarify values and incorporate them into personalised decisions for the child. An open communication style, with unbiased and tailored information in a supportive environment, is helpful. Dedicated training in communication and shared decision making could help to improve the incorporation of parental values in complex decisions for young children.

Debate: idiopathic short stature should be treated with growth hormone.

In this paper we outline the case for and against the treatment of idiopathic short stature with growth hormone. Drs Ambler and Fairchild argue that many of those with 'idiopathic' short stature are not 'short, normal children' and will ultimately receive molecular diagnoses. They also argue that there is a subset of children who suffer negative psychosocial consequences of their stature for whom growth hormone therapy is effective. Growth hormone has a very good safety record and is likely to be as cost-effective in idiopathic short-stature as in some other conditions that are currently funded. Dr Wilkinson counters that short stature is not associated with physical or psychological illness, and that there is no evidence that growth hormone improves psychological or physical wellbeing. Moreover, growth hormone for idiopathic short stature represents a form of enhancement rather than treatment, and is not a fair use of resources. Socially mediated disadvantage should be treated by attention to prejudice and not by hormone treatment.

Personal ethical settings for driverless cars and the utility paradox: An ethical analysis of public attitudes in UK and Japan.

Driverless cars are predicted to dramatically reduce collisions and casualties on the roads. However, there has been controversy about how they should be programmed to respond in the event of an unavoidable collision. Should they aim to save the most lives, prioritise the lives of pedestrians, or occupants of the vehicle? Some have argued that driverless cars should all be programmed to minimise total casualties. While this would appear to have wide international public support, previous work has also suggested regional variation and public reluctance to purchase driverless cars with such a mandated ethical setting. The possibility that algorithms designed to minimise collision fatalities would lead to reduced consumer uptake of driverless cars and thereby to higher overall road deaths, represents a potential "utility paradox". To investigate this paradox further, we examined the views of the general public about driverless cars in two online surveys in the UK and Japan, examining the influence of choice of a "personal ethical setting" as well as of framing on hypothetical purchase decisions. The personal ethical setting would allow respondents to choose between a programme which would save the most lives, save occupants or save pedestrians. We found striking differences between UK and Japanese respondents. While a majority of UK respondents wished to buy driverless cars that prioritise the most lives or their family members' lives, Japanese survey participants preferred to save pedestrians. We observed reduced willingness to purchase driverless cars with a mandated ethical setting (compared to offering choice) in both countries. It appears that the public values relevant to programming of driverless cars differ between UK and Japan. The highest uptake of driverless cars in both countries can be achieved by providing a personal ethical setting. Since uptake of driverless cars (rather than specific algorithm used) is potentially the biggest factor in reducing in traffic related accidents, providing some choice of ethical settings may be optimal for driverless cars according to a range of plausible ethical theories.

Knowing when to stop: futility in the ICU.

PURPOSE OF REVIEW: Decisions to withdraw or withhold potentially life-sustaining treatment are common in intensive care and precede the majority of deaths. When families resist or oppose doctors' suggestions that it is time to stop treatment, it is often unclear what should be done. This review will summarize recent literature around futility judgements in intensive care emphasising ethical and practical questions. RECENT FINDINGS: There has been a shift in the language of futility. Patients' families often do not believe medical assessments that further treatment would be unsuccessful. Attempts to determine through data collection which patients have a low or zero chance of survival have been largely unsuccessful, and are hampered by varying definitions of futility. A due-process model for adjudicating futility disputes has been developed, and may provide a better solution to futility disputes than previous futility statutes. SUMMARY: Specific criteria for unilateral withdrawal of treatment have proved hard to define or defend. However, it is ethical for doctors to decline to provide treatment that is medically inappropriate or futile. Understanding the justification for a futility judgement may be relevant to deciding the most appropriate way to resolve futility disputes.

British laypeople's attitudes towards gradual sedation, sedation to unconsciousness and euthanasia at the end of life.

BACKGROUND: Many patients at the end of life require analgesia to relieve pain. Additionally, up to 1/5 of patients in the UK receive sedation for refractory symptoms at the end of life. The use of sedation in end-of-life care (EOLC) remains controversial. While gradual sedation to alleviate intractable suffering is generally accepted, there is more opposition towards deliberate and rapid sedation to unconsciousness (so-called "terminal anaesthesia", TA). However, the general public's views about sedation in EOLC are not known. We sought to investigate the general public's views to inform policy and practice in the UK. METHODS: We performed two anonymous online surveys of members of the UK public, sampled to be representative for key demographic characteristics (n = 509). Participants were given a scenario of a hypothetical terminally ill patient with one week of life left. We sought views on the acceptability of providing titrated analgesia, gradual sedation, terminal anaesthesia, and euthanasia. We asked participants about the intentions of doctors, what risks of sedation would be acceptable, and the equivalence of terminal anaesthesia and euthanasia. FINDINGS: Of the 509 total participants, 84% and 72% indicated that it is permissible to offer titrated analgesia and gradual sedation (respectively); 75% believed it is ethical to offer TA. Eighty-eight percent of participants indicated that they would like to have the option of TA available in their EOLC (compared with 79% for euthanasia); 64% indicated that they would potentially wish for TA at the end of life (52% for euthanasia). Two-thirds indicated that doctors should be allowed to make a dying patient completely unconscious. More than 50% of participants believed that TA and euthanasia were non-equivalent; a third believed they were. INTERPRETATION: These novel findings demonstrate substantial support from the UK general public for the use of sedation and TA in EOLC. More discussion is needed about the range of options that should be offered for dying patients.

Antenatal diagnosis of trisomy 18, harm and parental choice.

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.