Annex A Withholding and Withdrawing Life-Prolonging Treatments: Good Practice in Decision-Making Commentary on the guidance Introduction (paragraphs 1-5) 1. This section explains the professional and public concerns, which are behind our decision to produce the guidance, especially concerns about overor under-treatment towards the end of life. It explains the basis on which we are providing advice on what are often contentious issues. Most importantly, it reassures readers that our advice does not support deliberate killing (including euthanasia) or assisted suicide, which has been a particular focus of concern. Because the law in this area is complex, as an aid for doctors, it outlines (through Annex A of the guidance) the legal background on which we have drawn, whilst highlighting the importance of seeking specific legal advice. Guiding Principles Respect for human life and best interests (paragraphs 6-8) 2. This section encapsulates the ethical principles around which there are a well-established consensus, and which allow for the possibility of withholding or withdrawing treatment in some cases. It points out the need to take great care in making judgements about the best interests of an individual patient, and highlights the importance of avoiding over-treatment of a patient when death is drawing near. Adult patients who can decide for themselves (paragraph 9) 3. This sets out the decision-making rights of adults who have the capacity to make their own decision. The wording takes account of the ruling in a recent case in the Family Division of the High Court (Re: Ms B), where Dame Elisabeth Butler-Sloss confirmed the principle that doctors must respect a refusal of treatment made by a competent patient, even where the consequences are that the patient will die. The ruling also established that, where doctors object to carrying out the patient s wishes, they have a duty to find another doctor prepared to do so. The principles are expanded on in paragraphs 29-35 of the Good Practice Framework. Adult patients who cannot decide for themselves (paragraphs 10-11) 4. This section explains the use of advance refusals of treatment and who has responsibility for, or a role in, making decisions on behalf of incapacitated A1
adult patients. It stresses the need for doctors to consult others involved in a patient s care, and explains what information should be sought from them. The principles are expanded on in paragraphs 36-39 of the Good Practice Framework. Choosing between options: difference of view about best interests (paragraphs 12-13) 5. Difficult situations can arise where, for example, patients or people close to an incapacitated patient insist on a treatment being given which the doctor considers to be clinically inappropriate. The advice in this section aims to minimise such conflict and ensure that appropriate steps are taken to reach a resolution. More detailed advice about steps that can be taken to try to achieve a consensus and resolve disagreements, where the patient is incapacitated, are given in paragraphs 40-41 of the Good Practice Framework. Concerns about starting then stopping treatment (paragraphs14-15) 6. This addresses a concern most often raised by medical staff, but also affecting patients families. Some people find it difficult to contemplate withdrawing a life-prolonging treatment once started. As a consequence, they may prefer to err on the side of withholding a treatment unless there is a good degree of certainty that it would benefit the patient. The guidance is intended to reassure that not starting a treatment and stopping a treatment are on a par, ethically and legally, if the treatment is not in the patient s best interests. We have been pressed, mainly by religious groups/individuals, to specifically include reference to the moral hazard some people see in withdrawing lifeprolonging treatment. We have not included in the guidance any rehearsal of the different ethical/moral arguments that it is possible to advance in relation to withholding or withdrawing treatment. (The guidance represents our conclusions, having weighed up the various arguments, on what can be considered good practice.) However, in order to acknowledge a point that is important and significant to many people, there is a footnoted cross-reference to a brief commentary in the glossary. Artificial nutrition and hydration (paragraphs 16-17) 7. This section highlights the particular difficulties faced by those who are called on to make decisions about whether to provide artificial nutrition or hydration for patients in certain circumstances. For example, most persons agree that antibiotics and ventilators are forms of medical treatment, and these may be withdrawn or withheld where they cannot achieve the intended outcome, or the burdens or risks to the patient are judged to outweigh the benefits. But there is some contention as to whether, and how, the same considerations might apply to liquids or nutrition given intravenously or through a nasogastric tube or gastric PEG. This section stresses the particular importance, therefore, of a clear and structured approach to these decisions, following the good practice set out at paragraphs 53-58. A2
Non-discrimination (paragraph 18) 8. This addresses concerns, raised in the media on many occasions, that some doctors may have considered a patient s age (usually the elderly) or disability (such as patients with Downs Syndrome) as sufficient grounds to withhold treatment or offer a poorer standard of care. This paragraph is based on the existing advice in our guidance booklet Good Medical Practice. Care of the dying (paragraph 19) 9. This is a reminder that good standards of care should also be provided when the goal of curing or improving a patient's condition can no longer be achieved. It highlights some of the issues about which patients and their families may be most concerned when death is approaching. Conscientious objections (paragraph 20) 10. This addresses situations where an individual doctor has fundamental religious or other objections to a proposal to withhold or withdraw lifeprolonging treatment. It allows doctors in this position to withdraw from a patient s care, without making this a de facto right or enabling doctors to abandon patients if alternative care is not available. Good Practice Framework Clinical responsibility for the decision (paragraph 23) 11. This addresses concerns raised by some doctors and patients that inexperienced junior doctors should not usually be responsible for making these difficult decisions, and without proper guidance from the supervising doctor. It makes clear that responsibility for the decision rests with the senior clinician, while allowing responsibility to be taken by an experienced junior or deputising doctor where appropriate. Diagnosis and prognosis (paragraph 24) 12. This emphasises the importance for all doctors of at least considering whether a second opinion is needed on the diagnosis and prognosis of a particular case. The advice is particularly intended to remind doctors who may not have had recent opportunities to up date their knowledge, or are dealing with cases with unusual features, to consult colleagues. Options for treatment (paragraphs 25-27) 13. These paragraphs remind doctors to ensure they are working with up to date clinical evidence or advice, in identifying options for treatment. It encourages doctors; even those who consider themselves experienced, to at least consider whether they might benefit from seeking a second opinion. A3
It should be flexible enough to enable experienced doctors to use their judgement, while giving a clear steer to others on when it is important to seek advice. Emergencies: with limited information about the patient (paragraph 28) 14. Situations can arise where the nature of the patient s condition, and the urgent need to decide on a course of action, does not allow time to seek a second opinion, or to consult with the patient or their family. This paragraph aims to ensure that there is no unnecessary delay, or inappropriate starting or continuation of possibly burdensome procedures, in clearly futile cases or where the patient s wishes are clearly known. Choosing between options: patients who can decide for themselves (paragraphs 29-35) 15. This section reminds doctors of patients right to decide for themselves what is the best course of action. It encourages doctors to give the earliest possible consideration to patient s wishes and needs, so that the patient and health care can plan how best to deal with any difficult decisions which they might face at a later date. It stresses the importance of sensitive handling of such discussions and suggests how that might be approached. Choosing between options: patients who cannot decide for themselves Assessing capacity to decide (paragraphs 36-38) 16. The guidance seeks to ensure that the interests of vulnerable patients are protected. In particular paragraph 37 emphasises that because a patient makes a choice that seems irrational or wrong, that is not sufficient reason to conclude that the patient is incapable of making a decision. It also stresses the importance of offering patients any necessary help to enable them to reach a decision. Meeting the responsibility for assessing best interests (paragraph 39) 17. This advice outlines the factors that should be taken into account when assessing the best interests of patients who cannot decide for themselves. It explains the contribution of the health care team, and relatives or others close to the patient, in reaching a view about what options are in the patient s best interests. Aiming for a consensus (paragraph 40) 18. The aim of consultation, about the options for patients who cannot decide for themselves, should be to achieve a consensus about what is in the patient's best interests. Where a consensus is reached, this allows decisions about the patient s care to be implemented appropriately and with the confidence and support of those involved in making the decision. However, as A4
the clinical, ethical and legal issues can be difficult to understand, it highlights the need to ensure access to appropriate information and support. Resolving disagreements about best interests (paragraph 41) 19. Where a consensus can t be reached, this paragraph suggests ways of obtaining further help from people who are not directly involved in the patient s care, and which may avoid the necessity of seeking a ruling from the court. Communicating decisions (paragraph 42) 20. This aims to ensure that there is no confusion amongst the health care team, or other carers, about what has been decided for a patient s care. It also deals with concerns that family members might not be given a clear explanation of what was being done and why, or that their role in providing support towards the end of a patient s life might not be properly recognised. Recording decisions (paragraph 43) 21. The advice is intended to ensure that doctors make adequate records that can serve the needs of all those involved in the patient s care, and can also provide a good basis for audit - see the advice at paragraph 45. Reviewing decisions (paragraph 44) 22. The advice should help to avoid situations where unexpected changes in a patient s condition are slow to be detected - for example a patient in a nursing home where the GP usually visits infrequently. Audit and education (paragraph 45) 23. Given the public and professional concerns about the clinical and other difficulties involved in making decisions about withholding and withdrawing treatment, doctors are encouraged to play their part in disseminating good practice. Areas for special consideration Children (paragraphs 46-52) 24. Whilst making clear that the general principles also apply to children, this section stresses the importance of making decisions that are based on what is in the interests of the child and not what might be bearable for parents or the health care team. It also advises how responsibility for decisions should be shared, given the legal and moral rights which parents have to make decisions on behalf of their children, and where it would be necessary to seek a ruling from the court. Artificial nutrition and hydration (paragraphs 53-58) A5
25. Explanations of the details in this section are given at paragraphs 9-14 of the Council briefing paper. The main aim of this advice is to ensure that doctors act in a way that offers reassurance to patients, their families and the wider public, that a patient s interests are thoroughly considered in any decision about artificial nutrition or hydration. Cardiopulmonary resuscitation (paragraphs 59-68) 26. This advice is intended to address concerns about how doctors make advance decisions about whether or not to attempt cardiopulmonary resuscitation on a particular patient. It stresses the need, even where the doctor considers that CPR may not be successful in restarting a patient s heart and lungs, to offer patients the opportunity to consider the matter. Annex A: The legal background 27. This is not a comprehensive or definitive statement of the legal position. Its purpose is to identify the legal issues that doctors, and others involved in making decisions about withdrawing or withholding treatment, will need to bear in mind. This is to meet a need, expressed by many doctors and patients, to have an outline of what may be legally permissible in this area. The guidance stresses the importance of having up to date legal advice. Glossary 28. There are some key phrases or concepts used in the guidance which are familiar to a professional audience, but may not be clear to other readers. The glossary explains the meaning being attached to these phrases, for the purposes of the guidance. A6