title: A matter of life and death: controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness.
abstract: Best interests decision-making and end-of-life care for patients in permanent vegetative or minimally conscious states (VS/MCS) is a complex area of clinical and legal practice, which is poorly understood by most clinicians, lawyers and members of the public. In recent weeks, the Oxford Shrieval lecture by Mr Justice Baker ('A Matter of Life and Death', 11 October 2016) and its subsequent reporting in the public press has sparked debate on the respective roles of clinicians, the Court of Protection and the Mental Capacity Act 2005 in decisions to withhold or withdraw life-sustaining treatments from patients with disorders of consciousness. The debate became polarised and confused by misquotation and inaccurate terminology, and highlighted a lack of knowledge about how patients in VS/MCS die in the absence of court approval. This article sets out the background and discussion and attempts to give a more accurate representation of the facts. In the spirit of transparency, I present a mortality review of all the patients in VS/MCS who have died under the care of my own unit in the last decade-with or without referral to the court, but always in accordance with the law. These data demonstrate that clinicians regularly undertake best interests decision-making in conjunction with families that may include life and death decisions (sometimes even the withdrawal or withholding of clinically assisted nutrition and hydration); and that these can be made within the current legal framework without necessarily involving the court in all cases. This is the first published case series of its kind.
authors.affiliation: Faculty of Life Sciences and Medicine, Department of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.|Regional/Hyper-acute Rehabilitation Unit, Northwick Park Hospital, Harrow, UK.
authors.forename: Lynne
authors.initials: L
authors.lastname: Turner-Stokes
mesh_terms: D000328:Adult; D003243:Consciousness; D003657:Decision Making / Q000941:ethics*; D034462:Dissent and Disputes; D005260:Female; D006801:Humans; D008020:Life Support Care / Q000941:ethics* / Q000331:legislation & jurisprudence; D008875:Middle Aged; D009014:Morals; D018458:Persistent Vegetative State; D013727:Terminal Care; D028761:Withholding Treatment / Q000941:ethics* / Q000331:legislation & jurisprudence; D055815:Young Adult
keywords: Capacity; Death; Decision-making; End of Life Care; Legal Aspects