End of life care
Research into the ethical and legal issues arising in end-of-life decision-making is a major focus of the Centre’s work, which has been recognised internationally.
The Centre’s research in this area covers everyday dilemmas arising in healthcare, such as those concerning the relief of symptoms in terminal illness and whether or not to provide life-sustaining treatment, through to the ethical and legal dimensions of (physician) assisted dying.
Centre staff have published numerous books and articles on these topics and, in their work, have engaged with the public, professionals, policymakers and the international media.
G Birchley, K Jones, R Huxtable et al (2016).
BMC Medical Ethics
Balancing Best Interests in Healthcare Ethics and Law (BABEL)
The interdisciplinary BABEL project explores healthcare decisions for individuals who are deemed to be unable to make decisions for themselves. When someone is considered to lack what the law calls ‘mental capacity’ or ‘competence’, then decisions must be made in their 'best interests'. Best interest decisions may be made concerning children – as poignantly illustrated in the widely-publicised legal case of Charlie Gard – and adults, including those with learning disabilities, dementia or prolonged disorders of consciousness.
BABEL asks how the 'best interests' of such patients should be understood – which factors and values should be considered, who should be involved, and indeed whether ‘best interests' is even the best approach.
The current BABEL study built on a Wellcome Trust seed project undertaken by Huxtable and Birchley. That work focused particularly on legal judgments about the provision or withdrawal of life-supporting treatment from patients in a minimally conscious state, alongside analysis of decisions about cryonics and vaccination.
Huxtable and Birchley were part of a GW4 (Bristol-Cardiff-Bath-Exeter) project, which explored dying well for patients with reduced agency. Huxtable has continued to explore the idea of ‘dying well’, for example at a Brigstow conference, and he was previously a Trustee of the National Council for Palliative Care.
Clinical Ethics and Law at the End of Life
Huxtable has published and presented extensively on the ethical and legal dimensions of clinical end-of-life decision-making. His publications include a book on withdrawing treatment from critically ill children and incapacitated adults, plus articles on such topics as advance decision-making and symptom relief in terminal illness. He has also advised on these issues, for example contributing to guidance about the deactivation of cardiac devices. Birchley has also published on the withdrawal of treatment from critically ill infants, Morley’s PhD research examined moral distress in nursing, including in end-of-life decisions, and Schofield’s PhD research explores palliative care ethics in Uganda.
Huxtable has published and presented extensively on the ethical and legal issues surrounding assisted dying (euthanasia, assisted suicide), which was the topic of his inaugural lecture. In his books (including one for a general readership) and articles (including one with Ives), he has distinctively argued for a compromise position on assisted dying. He has given evidence to committees exploring the phenomenon and has widely engaged with the public and professionals on the topic. Teed’s PhD research examines the doctor/patient relationship within clinical encounters which involve a patient requesting a medical report or medical records to enable an assisted suicide abroad