The COVID-19 pandemic poses numerous – and substantial – ethical challenges to health and healthcare. Debate continues about whether there is adequate protective equipment, testing and monitoring, and about when a vaccine might become available and social restrictions might be lifted. The thorny dilemmas posed by triage and resource allocation also attract considerable attention, particularly access to intensive care resources, should demand outstrip supply.
But the “COVID fog” clouds more than the intensive care unit. The provision and uptake of non-COVID related treatment is declining, due to the de-prioritisation of some services and interventions, alongside non-COVID patients’ fears of contracting the virus; difficult conversations are being held in suboptimal circumstances; and final farewells and death rituals have been disrupted. Healthcare personnel, meanwhile, are facing moral distress and, for some, difficulties arising from undertaking new roles in unfamiliar settings.
INTRODUCTION: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners (SPCPs) about real-world ethical challenges has not previously been synthesised. This evidence is crucial to inform education and training and adequately support staff. The aim of this systematic review is to synthesise the evidence regarding the ethical challenges which SPCPs encounter during clinical practice.
METHODS AND ANALYSIS: We will conduct a systematic review with narrative synthesis of empirical studies that use inductive methods to describe the ethical challenges reported by SPCPs. We will search multiple databases (MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, WHOLIS, Web of Science and CINAHL) without time, language or geographical restrictions. Keywords will be developed from scoping searches, consultation with information specialists and reference to key systematic reviews in palliative care and bioethics. Reference lists of included studies will be hand-searched. 10% of retrieved titles and abstracts will be independently dual screened, as will all full text papers. Quality will be dual assessed using the Mixed-Methods Appraisal Tool (2018). Narrative synthesis following Popay et al (2006) will be used to synthesise findings. The strength of resulting recommendations will be assessed using the Grading of Recommendations Assessment, Development and Evaluation approach for qualitative evidence (GRADE-CERQual).
ETHICS AND DISSEMINATION: As this review will include only published data, no specific ethical approval is required. We anticipate that the systematic review will be of interest to palliative care practitioners of all backgrounds and educators in palliative care and medical ethics. Findings will be presented at conferences and published open access in a peer-reviewed journal.
TRIAL REGISTRATION NUMBER: CRD42018105365.
BACKGROUND: The use of advance care planning and advance decisions for psychiatric care is growing. However, there is limited guidance on clinical management when a patient presents with suicidal behaviour and an advance decision and no systematic reviews of the extant literature.
OBJECTIVES: To synthesise existing literature on the management of advance decisions and suicidal behaviour.
DESIGN: A systematic search of seven bibliographic databases was conducted to identify studies relating to advance decisions and suicidal behaviour. Studies on terminal illness or end-of-life care were excluded to focus on the use of advance decisions in the context of suicidal behaviour. A textual synthesis of data was conducted, and themes were identified by using an adapted thematic framework analysis approach.
RESULTS: Overall 634 articles were identified, of which 35 were retained for full text screening. Fifteen relevant articles were identified following screening. Those articles pertained to actual clinical cases or fictional scenarios. Clinical practice and rationale for management decisions varied. Five themes were identified: (1) tension between patient autonomy and protecting a vulnerable person, (2) appropriateness of advance decisions for suicidal behaviour, (3) uncertainty about the application of legislation, (4) the length of time needed to consider all the evidence versus rapid decision-making for treatment and (5) importance of seeking support and sharing decision-making.
CONCLUSIONS: Advance decisions present particular challenges for clinicians when associated with suicidal behaviour. Recommendations for practice and supervision for clinicians may help to reduce the variation in clinical practice.
In an apparent international first, the High Court has allowed a terminally ill 14-year-old to be cryopreserved after her death. The patient, JS, requested this, as she hoped one day to be reanimated and cured. Jackson J focused on the welfare (or best interests) of JS as she approached the end of her life and particularly on her (apparently) competent wish to be cryopreserved. I consider the interests involved in a decision to undergo cryonics, specifically exploring which interests and whose interests are engaged. Starting with autonomy interests, the judgment implicitly supported a relational account of autonomy, but was dominated by a subjective interpretation of autonomy, which prioritized JS's wishes. Questions nevertheless arise about whether the dying person is entitled to legislate for the reanimated person he or she might become. Temporal concerns also feature when we interpret welfare in terms of happiness, because the dying person and the (potential) future reanimated person might have different interests at different times. Finally, I widen the analysis to accommodate the interests of others, by exploring whether cryonics is in, or contrary to, the public interest. Utilizing different accounts of the public interest, I argue that the case for cryonics is not entirely made out. These observations on autonomy, happiness and the public interest combine to suggest that, although there may not be a decisive case for denying a wish like JS's, there is a case for caution, at least while we seek to clarify and resolve the different interests in issue.
OBJECTIVE: In English paediatric practice, English law requires that parents and clinicians agree the 'best interests' of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. We report qualitative research exploring how the best interests standard operates in practice, particularly with decisions related to planned non-treatment. We discuss results in the light of accounts of best interests in the medical ethics literature.
DESIGN: We conducted 39 qualitative interviews, exploring decision making in the paediatric intensive care unit, with doctors, nurses, clinical ethics committee members and parents whose children had a range of health outcomes. Interviews were audio-recorded and analysed thematically.
RESULTS: Parents and clinicians indicated differences in their approaches to deciding the child's best interests. These were reconciled when parents responded positively to clinicians' efforts to help parents agree with the clinicians' view of the child's best interests. Notably, protracted disagreements about a child's best interests in non-treatment decisions were resolved when parents' views were affected by witnessing their child's physical deterioration. Negotiation was the norm and clinicians believed avoiding the courts was desirable.
CONCLUSIONS: Sensitivity to the long-term interests of parents of children with life-limiting conditions is defensible but must be exercised proportionately. Current approaches emphasise negotiation but offer few alternatives when decisions are at an impasse. In such situations, the instrumental role played by a child's deterioration and avoidance of the courts risks giving insufficient weight to the child's interests. New approaches to decision making are needed.
L'auteur fait valoir son point de vue sur les directives anticipées et leur utilisation en Angleterre et aux Pays de Galles. Il trouve cette disposition inadaptée pour répondre au besoin des patients de faire connaître leurs souhaits en fin de vie.
Les auteurs font une synthèse du texte de l'EAPC et des commentaires internationaux. Ils relèvent 4 thèmes essentiels : réflexions sur les définitions, compatibilité ou incompatibilité entre soins palliatifs et euthanasie, positions éthiques ou idéologiques, résultats du débat autour de cette situation.