New guidance from the BMA and Royal College of Physicians will support doctors making decisions about CANH for adults who lack capacity in England and Wales.
Tony Bland, Nancy Cruzan, Eluana Englaro, Paul Briggs. Different names and different stories, some of them known to us, others less so. Then there are the individuals known only as mononyms: Mrs N, Miss S, Mr Y. For many people the details are vaguer, blurrier. All of them were at the centre of one of the most challenging questions facing the medical profession and wider society: just because we can keep someone alive indefinitely, should we? In these cases, the focus was on the provision or removal of clinically-assisted nutrition and hydration. With it, many people can go on living for some time. Without it, they will certainly die.
In the UK, CANH has been classified as a form of medical treatment (as opposed to basic care) since 1992 when the House of Lords heard the case of Airedale NHS Trust v Bland. It follows that, like all other medical treatment, it can only be provided when it is in the individual patient’s best interests to receive it. Bland was a landmark judgment. Tony Bland was the first person in UK legal history to be allowed to die by the courts through the withdrawal of nutrition and hydration; but the judges were cautious. They made clear that until such time as a body of expertise and practice had been built up, decisions about withdrawing CANH from patients in a persistent vegetative state should, “as a matter of routine”, be brought before the court.
Post-Bland, law and regulation on medical decision-making developed apace. The Mental Capacity Act 2005 (MCA) and its accompanying Code of Practice codified the obligations of doctors when making medical decisions for patients lacking capacity, which were expanded by judicial interpretation at the highest level. At the same time, medical understanding of the diagnosis and classification of prolonged disorders of consciousness became increasingly blurred—in particular the “bright line” boundary between minimally conscious states (MCS) in the context of sudden-onset brain injury and other states of low awareness which result from a progressive neurodegenerative condition, or as part of a terminal decline at the end of life. What the precise “requirement” for court involvement in these cases was has also been questioned—in particular, singling out CANH as warranting special treatment when other decisions about life-sustaining treatment were routinely made at the bedside—in addition to confusion about the precise circumstances in which court involvement was required.
The issue has now been definitively settled by the Supreme Court in An NHS Trust v Y, which confirmed that there is no requirement for decisions to withdraw CANH to be approved by the Court of Protection in any case where there is agreement as to the best interests of the patient, and where both the Mental Capacity Act 2005 and good practice guidance have been followed.
And what good practice guidance is there? The BMA, together with the Royal College of Physicians, has published new professional guidance, which has been endorsed by the General Medical Council. It covers decisions about CANH in adults who lack capacity in England and Wales, including both patients in vegetative state (VS) and MCS following a sudden-onset brain injury (the cases which, traditionally, were the subject of applications to the Court of Protection) and the much larger group of patients who have multiple co-morbidities, frailty, or neurodegenerative conditions in whom decisions about CANH are needed.
Our starting point, as per the law in this area, is that there is a strong presumption that it will be in a patient’s best interests to receive life-prolonging treatment—but that this can be rebutted if it is known with sufficient certainty that the individual would not want CANH provided in their current circumstances. This means that the individual person must be at the nexus of decision-making, with doctors seeking to understand who they were as a person before they became sick, their wishes, feelings, beliefs and values which would inform their own decision about their situation, were they able to decide for themselves. It means working with family members and others who are close to the patient to reach the decisions that are right for each individual—not what family members or doctors might want for the patient, or for themselves, nor what any “reasonable” person would want.
Our new guidance provides detailed practical advice on how to carry out these robust assessments, and sets out a clear statement of doctors’ legal responsibilities and the process to be followed for sufficient independent scrutiny of decisions (through second clinical opinions and various audit and review processes). Together with a real commitment to supporting doctors, through education, training, and practical support, we are confident that the guidance will help clinicians make these decisions appropriately and sensitively, in a way that protects patients and doctors and provides reassurance to the public.
Tony Bland, Paul Briggs. Mrs N, Miss S, Mr Y—they are a reminder to all involved in decision-making that the voices and stories of individual patients must not be lost in the process.
- See also: Editorial: Clinically assisted nutrition and hydration
The new guidance from the BMA and the Royal College of Physicians, endorsed by the GMC, is available from www.bma.org.uk/CANH, alongside a range of other materials and resources for clinicians.
Ruth Campbell is a senior policy advisor in the BMA’s Medical Ethics and Human Rights Department and the joint project lead on the development of the new guidance.
John Chisholm is the chair of the BMA’s Medical Ethics Committee and Chair of the group which developed this guidance.
Veronica English is the head of the Medical Ethics and Human Rights Department at the BMA, and joint project lead on the development of the new guidance.
Competing interests: None further declared