A Personalized Patient Preference Predictor for Substituted Judgments in Healthcare: Technically Feasible and Ethically Desirable.

When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that even if such a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient's (former) autonomy since it draws on the 'wrong' kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently 'fine-tuned' on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient's preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient's own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies.

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.

Consent-GPT: is it ethical to delegate procedural consent to conversational AI?

Obtaining informed consent from patients prior to a medical or surgical procedure is a fundamental part of safe and ethical clinical practice. Currently, it is routine for a significant part of the consent process to be delegated to members of the clinical team not performing the procedure (eg, junior doctors). However, it is common for consent-taking delegates to lack sufficient time and clinical knowledge to adequately promote patient autonomy and informed decision-making. Such problems might be addressed in a number of ways. One possible solution to this clinical dilemma is through the use of conversational artificial intelligence using large language models (LLMs). There is considerable interest in the potential benefits of such models in medicine. For delegated procedural consent, LLM could improve patients' access to the relevant procedural information and therefore enhance informed decision-making.In this paper, we first outline a hypothetical example of delegation of consent to LLMs prior to surgery. We then discuss existing clinical guidelines for consent delegation and some of the ways in which current practice may fail to meet the ethical purposes of informed consent. We outline and discuss the ethical implications of delegating consent to LLMs in medicine concluding that at least in certain clinical situations, the benefits of LLMs potentially far outweigh those of current practices.

As low as reasonably practicable (ALARP): a moral model for clinical risk management in the setting of technology dependence.

Children dependent on life-prolonging medical technology are often subject to a constant background risk of sudden death or catastrophic complications. Such children can be cared for in hospital, in an intensive care environment with highly trained nurses and doctors able to deliver specialised, life-saving care immediately. However, remaining in hospital, when life expectancy is limited, can considered to be a harm in of itself. Discharge home offers the possibility for an improved quality of life for the child and their family but comes with significant medical risks.When making decisions for children, two ethical models predominate, the promotion of the child's best interests or the avoidance of harm. However, in some circumstances, particularly for children with life-limiting and/or life-threatening illness, all options may be associated with risk. There are no good options, only potentially harmful choices.In this paper, we explore decisions made by one family in such circumstances. We describe a model adopted from risk management programmes beyond medicine, which offers a potential framework for identifying risks to the child that are morally permissible. Some risks and harms to a child, not ordinarily permitted, may be acceptable when undertaken in the pursuit of a specified desired good, so long as they are as low as reasonably practicable.

Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years.

BACKGROUND: Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families throughout the antenatal period. METHODS: A single-centre retrospective chart review of all antenatal referrals to a quaternary children's palliative care service over a 14-year period from 2007 to 2021. RESULTS: One hundred fifty-nine antenatal referrals were made to the PPC team over a 14-year period, with increasing referrals over time. Referrals were made for a broad spectrum of diagnoses with cardiac conditions (29% of referrals) and Trisomy 18 (28% of referrals) being the most prevalent. 129 referrals had contact with the PPC team prior to birth and 60 had a personalised symptom management plan prepared for the baby prior to birth. Approximately one third (48/159) died in utero or were stillborn. Only a small number of babies died at home (n = 10) or in a hospice (n = 6) and the largest number died in hospital (n = 72). 30 (19% of all referrals) were still alive at the time of the study aged between 8 months and 8 years. CONCLUSIONS: Specialist PPC teams can play an important role in supporting families during the antenatal period following a diagnosis of a life-limiting fetal condition and demand for this service is increasing. A large proportion of the cases referred will not survive to the point of delivery and a number of babies may survive much longer than predicted. PPC teams can be particularly helpful navigating the uncertainty that exists in the antenatal period and ensuring that plans are made for the full spectrum of possible outcomes.

Should AI allocate livers for transplant? Public attitudes and ethical considerations.

BACKGROUND: Allocation of scarce organs for transplantation is ethically challenging. Artificial intelligence (AI) has been proposed to assist in liver allocation, however the ethics of this remains unexplored and the view of the public unknown. The aim of this paper was to assess public attitudes on whether AI should be used in liver allocation and how it should be implemented. METHODS: We first introduce some potential ethical issues concerning AI in liver allocation, before analysing a pilot survey including online responses from 172 UK laypeople, recruited through Prolific Academic. FINDINGS: Most participants found AI in liver allocation acceptable (69.2%) and would not be less likely to donate their organs if AI was used in allocation (72.7%). Respondents thought AI was more likely to be consistent and less biased compared to humans, although were concerned about the "dehumanisation of healthcare" and whether AI could consider important nuances in allocation decisions. Participants valued accuracy, impartiality, and consistency in a decision-maker, more than interpretability and empathy. Respondents were split on whether AI should be trained on previous decisions or programmed with specific objectives. Whether allocation decisions were made by transplant committee or AI, participants valued consideration of urgency, survival likelihood, life years gained, age, future medication compliance, quality of life, future alcohol use and past alcohol use. On the other hand, the majority thought the following factors were not relevant to prioritisation: past crime, future crime, future societal contribution, social disadvantage, and gender. CONCLUSIONS: There are good reasons to use AI in liver allocation, and our sample of participants appeared to support its use. If confirmed, this support would give democratic legitimacy to the use of AI in this context and reduce the risk that donation rates could be affected negatively. Our findings on specific ethical concerns also identify potential expectations and reservations laypeople have regarding AI in this area, which can inform how AI in liver allocation could be best implemented.

What is 'medical necessity'?

Imagine that we are considering whether our healthcare system (or insurer) should fund treatment or procedure X. One factor that may be cited is that of so-called 'medical necessity'. The claim would be that treatment X should be eligible for funding if it is medically necessary, but ineligible if this does not apply. Similarly, (and relevant to the debates in this special issue), if considering whether a particular treatment should be ethically and/or legally permitted, we may wish to distinguish between cases where the treatment is medically necessary, and those were it is not. But what do we mean by this concept? Here I will propose and briefly defend one plausible and practical definition.

Intensive Care Clinicians' Perspectives on Ethical Challenges Raised by Rapid Genomic Testing in Critically Ill Infants.

Rapid genomic testing (rGT) enables genomic information to be available in a matter of hours, allowing it to be used in time-critical settings, such as intensive care units. Although rGT has been shown to improve diagnostic rates in a cost-effective manner, it raises ethical questions around a range of different areas, including obtaining consent and clinical decision-making. While some research has examined the perspectives of parents and genetics health professionals, the attitudes of intensive care clinicians remain under-explored. To address this gap, we administered an online survey to English-speaking neonatal/paediatric intensivists in Europe, Australasia and North America. We posed two ethical scenarios: one relating to obtaining consent from the parents and the second assessing decision-making regarding the provision of life-sustaining treatments. Descriptive statistics were used to analyse the data. We received 40 responses from 12 countries. About 50-75% of intensivists felt that explicit parental consent was necessary for rGT. About 68-95% felt that a diagnosis from rGT should affect the provision of life-sustaining care. Results were mediated by intensivists' level of experience. Our findings show divergent attitudes toward ethical issues generated by rGT among intensivists and suggest the need for guidance regarding ethical decision-making for rGT.

Nasal high flow therapy for primary respiratory support in preterm infants.

BACKGROUND: Nasal high flow (nHF) therapy provides heated, humidified air and oxygen via two small nasal prongs, at gas flows of more than 1 litre/minute (L/min), typically 2 L/min to 8 L/min. nHF is commonly used for non-invasive respiratory support in preterm neonates. It may be used in this population for primary respiratory support (avoiding, or prior to the use of mechanical ventilation via an endotracheal tube) for prophylaxis or treatment of respiratory distress syndrome (RDS). This is an update of a review first published in 2011 and updated in 2016. OBJECTIVES: To evaluate the benefits and harms of nHF for primary respiratory support in preterm infants compared to other forms of non-invasive respiratory support. SEARCH METHODS: We used standard, extensive Cochrane search methods. The latest search date March 2022. SELECTION CRITERIA: We included randomised or quasi-randomised trials comparing nHF with other forms of non-invasive respiratory support for preterm infants born less than 37 weeks' gestation with respiratory distress soon after birth. DATA COLLECTION AND ANALYSIS: We used standard Cochrane Neonatal methods. Our primary outcomes were 1. death (before hospital discharge) or bronchopulmonary dysplasia (BPD), 2. death (before hospital discharge), 3. BPD, 4. treatment failure within 72 hours of trial entry and 5. mechanical ventilation via an endotracheal tube within 72 hours of trial entry. Our secondary outcomes were 6. respiratory support, 7. complications and 8. neurosensory outcomes. We used GRADE to assess the certainty of evidence. MAIN RESULTS: We included 13 studies (2540 infants) in this updated review. There are nine studies awaiting classification and 13 ongoing studies. The included studies differed in the comparator treatment (continuous positive airway pressure (CPAP) or nasal intermittent positive pressure ventilation (NIPPV)), the devices for delivering nHF and the gas flows used. Some studies allowed the use of 'rescue' CPAP in the event of nHF treatment failure, prior to any mechanical ventilation, and some allowed surfactant administration via the INSURE (INtubation, SURfactant, Extubation) technique without this being deemed treatment failure. The studies included very few extremely preterm infants less than 28 weeks' gestation. Several studies had unclear or high risk of bias in one or more domains. Nasal high flow compared with continuous positive airway pressure for primary respiratory support in preterm infants Eleven studies compared nHF with CPAP for primary respiratory support in preterm infants. When compared with CPAP, nHF may result in little to no difference in the combined outcome of death or BPD (risk ratio (RR) 1.09, 95% confidence interval (CI) 0.74 to 1.60; risk difference (RD) 0, 95% CI -0.02 to 0.02; 7 studies, 1830 infants; low-certainty evidence). Compared with CPAP, nHF may result in little to no difference in the risk of death (RR 0.78, 95% CI 0.44 to 1.39; 9 studies, 2009 infants; low-certainty evidence), or BPD (RR 1.14, 95% CI 0.74 to 1.76; 8 studies, 1917 infants; low-certainty evidence). nHF likely results in an increase in treatment failure within 72 hours of trial entry (RR 1.70, 95% CI 1.41 to 2.06; RD 0.09, 95% CI 0.06 to 0.12; number needed to treat for an additional harmful outcome (NNTH) 11, 95% CI 8 to 17; 9 studies, 2042 infants; moderate-certainty evidence). However, nHF likely does not increase the rate of mechanical ventilation (RR 1.04, 95% CI 0.82 to 1.31; 9 studies, 2042 infants; moderate-certainty evidence). nHF likely results in a reduction in pneumothorax (RR 0.66, 95% CI 0.40 to 1.08; 10 studies, 2094 infants; moderate-certainty evidence) and nasal trauma (RR 0.49, 95% CI 0.36 to 0.68; RD -0.06, 95% CI -0.09 to -0.04; 7 studies, 1595 infants; moderate-certainty evidence). Nasal high flow compared with nasal intermittent positive pressure ventilation for primary respiratory support in preterm infants Four studies compared nHF with NIPPV for primary respiratory support in preterm infants. When compared with NIPPV, nHF may result in little to no difference in the combined outcome of death or BPD, but the evidence is very uncertain (RR 0.64, 95% CI 0.30 to 1.37; RD -0.05, 95% CI -0.14 to 0.04; 2 studies, 182 infants; very low-certainty evidence). nHF may result in little to no difference in the risk of death (RR 0.78, 95% CI 0.36 to 1.69; RD -0.02, 95% CI -0.10 to 0.05; 3 studies, 254 infants; low-certainty evidence). nHF likely results in little to no difference in the incidence of treatment failure within 72 hours of trial entry compared with NIPPV (RR 1.27, 95% CI 0.90 to 1.79; 4 studies, 343 infants; moderate-certainty evidence), or mechanical ventilation within 72 hours of trial entry (RR 0.91, 95% CI 0.62 to 1.33; 4 studies, 343 infants; moderate-certainty evidence). nHF likely results in a reduction in nasal trauma, compared with NIPPV (RR 0.21, 95% CI 0.09 to 0.47; RD -0.17, 95% CI -0.24 to -0.10; 3 studies, 272 infants; moderate-certainty evidence). nHF likely results in little to no difference in the rate of pneumothorax (RR 0.78, 95% CI 0.40 to 1.53; 4 studies, 344 infants; moderate-certainty evidence). Nasal high flow compared with ambient oxygen We found no studies examining this comparison. Nasal high flow compared with low flow nasal cannulae We found no studies examining this comparison. AUTHORS' CONCLUSIONS: The use of nHF for primary respiratory support in preterm infants of 28 weeks' gestation or greater may result in little to no difference in death or BPD, compared with CPAP or NIPPV. nHF likely results in an increase in treatment failure within 72 hours of trial entry compared with CPAP; however, it likely does not increase the rate of mechanical ventilation. Compared with CPAP, nHF use likely results in less nasal trauma and likely a reduction in pneumothorax. As few extremely preterm infants less than 28 weeks' gestation were enrolled in the included trials, evidence is lacking for the use of nHF for primary respiratory support in this population.

End of life care in the setting of extreme prematurity - practical challenges and ethical controversies.

While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely preterm infants in the delivery room and in the neonatal intensive care unit. We identify potential justifications for differences in the end of life care in this population as well as practical and ethical challenges.

The harm principle, personal identity and identity-relative paternalism.

Is it ethical for doctors or courts to prevent patients from making choices that will cause significant harm to themselves in the future? According to an important liberal principle the only justification for infringing the liberty of an individual is to prevent harm to others; harm to the self does not suffice.In this paper, I explore Derek Parfit's arguments that blur the sharp line between harm to self and others. I analyse cases of treatment refusal by capacitous patients and describe different forms of paternalism arising from a reductionist view of personal identity. I outline an Identity Relative Paternalistic Intervention Principle for determining when we should disallow refusal of treatment where the harm will be accrued by a future self, and consider objections including vagueness and non-identity.Identity relative paternalism does not always justify intervention to prevent harm to future selves. However, there is a stronger ethical case for doing so than is often recognised.

Expanded terminal sedation in end-of-life care.

Despite advances in palliative care, some patients still suffer significantly at the end of life. Terminal Sedation (TS) refers to the use of sedatives in dying patients until the point of death. The following limits are commonly applied: (1) symptoms should be refractory, (2) sedatives should be administered proportionally to symptoms and (3) the patient should be imminently dying. The term 'Expanded TS' (ETS) can be used to describe the use of sedation at the end of life outside one or more of these limits.In this paper, we explore and defend ETS, focusing on jurisdictions where assisted dying is lawful. We argue that ETS is morally permissible: (1) in cases of non-refractory suffering where earlier treatments are likely to fail, (2) where gradual sedation is likely to be ineffective or where unconsciousness is a clinically desirable outcome, (3) where the patient meets all criteria for assisted dying or (4) where the patient has greater than 2 weeks to live, is suffering intolerably, and sedation is considered to be the next best treatment option for their suffering.While remaining two distinct practices, there is scope for some convergence between the criteria for assisted dying and the criteria for ETS. Dying patients who are currently ineligible for TS, or even assisted dying, should not be left to suffer. ETS provides one means to bridge this gap.

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.