The British Medical Association (BMA) and Royal College of Physicians (RCP) today publish decision-making guidance for doctors on clinically-assisted nutrition and hydration (CANH) for patients who lack the capacity to consent.
The guidance, endorsed by the General Medical Council, follows a number of legal developments and aims to ensure the law is followed correctly and to give practical advice to health professionals about how to make these difficult decisions, based on what is in the best interests of the individual patient.
The BMA and the RCP have also produced an information booklet for healthcare providers and managers, and a guide for family and friends, outlining the key role they have to play in the decision-making process.
The guidance covers decisions in patients who lack capacity in England and Wales, who are not imminently dying and could go on living for some time if CANH – which by law is a form of medical treatment – is provided. This guidance covers a broad spectrum of patients who have been divided into three broad categories: patients with a progressive neurodegenerative condition; patients with multiple comorbidities or frailty which is likely to shorten life expectancy, who have suffered a sudden-onset, or rapidly progressing, brain injury; and thirdly, previously healthy patients who are in a vegetative state (VS) or minimally conscious state (MCS) following a sudden-onset brain injury.
Publication of the guidance follows the Supreme Court’s judgment in July 2018 in the case of Mr Y, which confirmed that there is no requirement for decisions about CANH to be approved by the court, provided there is no disagreement between the treatment team and the patient’s family and the law and professional guidance have been followed.
The guidance provides the most up-to-date statement of doctors’ professional and legal obligations, and provides in-depth advice about the process to be followed and the different factors for doctors to consider in making these decisions. In the absence of the involvement of the court, the guidance will provide vital support to doctors, whilst protecting patients and preserving public confidence.
While the starting-point is the strong presumption that CANH should be provided, with the intention of prolonging life, at the centre of any decision is whether beginning or continuing treatment is in the best interests of the individual patient. This guidance lays out how these best interests assessments should be made, and the important role that patients’ families and those close to them play in the process. It also includes detailed information on seeking the necessary second opinion from another clinician when making these decisions.
It clarifies how health professionals must find out as much as possible about the patient from family and friends, to determine what the individual would want to happen in the situation that has arisen. If it is clear that the patient would, or would not, want CANH provided, this will usually determine their best interests.
Dr John Chisholm, BMA medical ethics committee chair, said: “Decisions surrounding the withdrawal of clinically-assisted nutrition and hydration (CANH) pose clinical, ethical and legal challenges for doctors, and can be needed at an incredibly difficult time for patients’ families and loved ones.
Following a number of legal developments, the BMA has worked with the Royal College of Physicians to produce this guidance on best practice for health professionals when facing these decisions, as well as information for families.
During the course of our work on this issue we shared the guidance with a wide range of legal and health professionals and organisations, and with patient support groups, to seek and take on their views.
The law is clear that CANH is a form of medical treatment, much like artificial ventilation, and while there should be a strong presumption that starting or continuing this treatment is in the patient’s best interests, this will not always be the case. The aim of medical treatment is not simply to prolong life at all costs, and the courts have been clear that in some circumstances it will not be in the best interests of the individual patient to receive CANH.
This guidance therefore provides practical guidance for health professionals on how to follow the legal and regulatory framework that is in place to make the decision that is right for each individual.
In some cases, patients will have explicitly stated their wishes in an advance decision to refuse treatment (ADRT) or appointed someone to act as their health and welfare attorney to make these decisions on their behalf. However, in situations where neither of these exists, the doctor must be able to make an informed decision based on what is in the best interests of the individual patient, taking into account what is known about their wishes, feelings, beliefs and values.
As with all decisions around medical treatment, the final decision-maker is the clinician responsible for the patient’s care, on the patient’s behalf. Our guidance explains how to perform a comprehensive best interests assessment, involving family members, friends and anyone who can provide relevant information about what is right for the individual person and how they would have viewed their current situation.
During the course of our work, we heard from families who had been through this process; they shared their experiences with us – both positive and negative – and told us how reassuring the guidance would have been for them had it been available at the time.
The guidance aims to help health professionals and families to work through these difficult decisions together, to make the right decision for each individual patient. Of course, when there is doubt or disagreement about what would be in the patient’s best interests, the court still has an important role to play.”
Professor Lynne Turner-Stokes, chair of the guidelines development group for the Royal College of Physicians’ National Clinical Guidelines for Prolonged Disorders of Consciousness, said: “The recent change in the law is welcome in that it brings decision-making about clinically-assisted nutrition and hydration in patients with prolonged disorders of consciousness into line with other groups of patients – and indeed with decisions about other forms of life-sustaining treatment.
This guidance sets out the practical steps to enable doctors and other health professionals to understand their responsibilities and to ensure that they are following best practice in clinical decision-making, so that they act at all times in the patient’s best interests and in accordance with their likely wishes.
Whilst the starting point is always strongly in favour of preserving life, this presumption will not hold in all cases. These decisions are never easy and can be distressing, not only for family members but also for the treating team. We hope that the guidance will help to support both clinicians and patients’ families through this difficult time.”
Charlie Massey, chief executive of the General Medical Council, which was part of the advisory group which prepared the guidance and has endorsed the guidance, said: “We welcome this guidance which provides detailed and practical advice to doctors, including ways to support those close to the patient at what can be a very distressing and confusing time.
We were pleased to be part of the advisory group and we are satisfied that the general principles and standards of practice are consistent with our own guidance on consent and end of life care.
This is a complex, sensitive area, and we want doctors to feel supported to make ethically and legally sound decisions in the best interests of patients.”
The full guidance and supporting documents can be found here.