This part of the guidance is not designed to be read in isolation from the rest of the document. Given the very serious nature of the decisions being made, we would urge all readers to take the time to consider the whole of the document. This part is intended to highlight the main points arising from the guidance, as an aide-mémoire.
1. The primary goal of medical treatment is to benefit the patient by restoring or maintaining the patient’s health as far as possible, maximising benefit and minimising harm.
2. If treatment fails, or ceases, to give a net benefit to the patient (or if the patient has competently refused the treatment), the primary goal of medical treatment cannot be realised and the justification for providing the treatment is removed. Unless some other justification can be demonstrated, treatment that does not provide net benefit to the patient may, ethically and legally, be withheld or withdrawn, and the goal of medicine should shift to the palliation of symptoms.
3. Prolonging a patient’s life usually, but not always, provides a health benefit to that patient. It is not an appropriate goal of medicine to prolong life at all costs, with no regard to its quality or the burdens of treatment.
4. Although emotionally it may be easier to withhold treatment than to withdraw that which has been started, there are no legal, or necessary morally relevant, differences between the two actions.
5. Treatment should never be withheld, when there is a possibility that it will benefit the patient, simply because withholding is considered to be easier than withdrawing treatment.
6. A voluntary refusal of life-prolonging treatment by a competent adult must be respected.
7. Where a patient has lost the capacity to make a decision but has a valid advance directive refusing life-prolonging treatment, this must be respected.
8. A valid advance refusal of treatment has the same legal authority as a contemporaneous refusal, and legal action could be taken against a doctor who provides treatment in the face of a valid refusal.
Adults
9. People have varying levels of capacity and should be encouraged to participate in discussion and decision making about all aspects of their lives to the greatest extent possible. The graver the consequences of the decision, the commensurately greater the level of competence required to take that decision.
10. In England, Wales and Northern Ireland, no other individual has the power to give or withhold consent for the treatment of an adult who lacks decision making capacity but treatment may be provided, without consent, if it is considered by the clinician in charge of the patient’s care to be necessary and in the best interests of the patient.
11. In Scotland, a tutor dative may be able to make treatment decisions on behalf of adults who lack decision making capacity.
12. The same principles apply when decisions are taken in relation to a woman who is pregnant with a viable fetus and is unable to make or communicate decisions. The fetus has no legal status, and the decision must be that which represents the best interests of the pregnant woman. The extent to which the woman’s likely wishes about the outcome of the pregnancy may be taken into account in determining her best interests is unclear. In order that these matters may be fully explored, legal advice should be sought.
Babies, children and young people
13. The same moral duties are owed to babies, children and young people as to adults.
14. Those with parental responsibility for a baby or young child are legally and morally entitled to give or withhold consent to treatment. Their decisions will usually be determinative unless they conflict seriously with the interpretation of those providing care about the child’s best interests.
15. Treatment in a young person’s best interests may proceed where there is consent from somebody authorised to give it: the competent young person him or herself, somebody with parental responsibility, or a Court. However, a young person’s refusal may not, in law, necessarily take precedence over the consent of either parents or a Court.
16. Even where they are not determinative, the views and wishes of competent young people are an essential component of the assessment of their best interests and should, therefore, be given serious consideration at all stages of decision making.
17. Where relevant locally or nationally agreed guidelines exist for the diagnosis and management of the condition, these should be consulted as part of the clinical assessment. Additional advice should be sought where necessary.
18. Where there is reasonable doubt about its potential for benefit, treatment should be provided for a trial period with a subsequent prearranged review. If, following the review, it is decided that the treatment has failed or ceased to be of benefit to the patient, consideration should be given to its withdrawal.
19. Before a decision is made to withhold or withdraw treatment, adequate time, resources and facilities should be made available to permit a thorough and appropriate assessment of the patient’s condition including, where appropriate, the patient’s potential for self-awareness, awareness of others and the ability intentionally to interact with them. This should involve a multidisciplinary team with expertise in undertaking this type of assessment.
20. The benefits, risks and burdens of the treatment in the particular case should be assessed.
21. Although ultimately the responsibility for treatment decisions rests with the clinician in charge of the patient’s care, it is important, where non-emergency decisions are made, that account is taken of the views of other health professionals involved in the patient’s care and people close to the patient, in order to ensure that the decision is as well informed as possible.
22. Even where their views have no legal status, those close to the patient can provide important information to help ascertain whether the patient would have considered life-prolonging treatment to be beneficial.
23. Good communication, both within the health care team and between the health team and the patient and/or those close to the patient, is an essential part of the decision making. Wherever possible, consensus should be sought amongst all those consulted about whether the provision of life-prolonging treatment would benefit the patient.
24. Decisions to withhold or withdraw conventional treatment, on the basis that it is not providing a benefit to the patient, should be made by the clinician in overall charge of the patient’s care following discussion with the rest of the health care team and, where appropriate, those close to the patient. Where the clinician’s view is seriously challenged and agreement cannot be reached by other means, review by a Court would be advisable.
25. In England, Wales and Northern Ireland, proposals to withdraw artificial nutrition and hydration from a patient who is in a persistent vegetative state, or in a state of very low awareness closely resembling PVS, currently require legal review.
26. In Scotland the withdrawal of artificial nutrition and hydration from a patient in PVS does not require a Court declaration.
27. The Courts have not specified that declarations should be sought before withholding or with-drawing artificial nutrition and hydration from patients who are not in persistent vegetative state. Although a body of medical opinion has developed that such action would be appropriate in some cases (such as some patients who have suffered a serious stroke or have severe dementia), United Kingdom Courts have not yet considered such a case. This arguably leaves doctors in an area of legal uncertainty and therefore open to challenge.
28. The BMA believes that the following additional safeguards should be applied to decisions to withhold or withdraw artificial nutrition and hydration from patients whose death is not imminent and whose wishes are not known.
(a) All proposals to withhold or withdraw artificial nutrition and hydration, whether in hospital or in the community, should be subject to formal clinical review by a senior clinician who has experience of the condition from which the patient is suffering, and who is not part of the treating team.
(b) In England, Wales and Northern Ireland, where it is proposed to withdraw artificial nutrition and hydration from a patient in a persistent vegetative state or a state closely resembling PVS, legal advice should be sought and a Court declaration is likely to be required until such a time as the Courts have stated otherwise.
(c) All cases in which artificial nutrition and hydration have been withdrawn should be available for clinical review to ensure that appropriate procedures and guidelines are followed. Anonymised information should also be available to the Secretary of State on request and, where applicable, to the Commission for Health Improvement.
29. The basis for the decision to withhold or withdraw life-prolonging treatment should be carefully documented in the patient’s medical notes.
30. Decisions to withhold or withdraw life-prolonging treatment should be reviewed before and after implementation, to take account of any change in circumstances.
31. Decisions to withdraw or withhold life-prolonging treatment should be subject to review and audit.
32. Although not responsible for making the decision to withhold or withdraw treatment, those close to the patient are often left with feelings of guilt and anxiety in addition to their bereavement. It is important that the family are supported both before and after the decision has been made to withdraw or withhold life-prolonging treatment.
33. The emotional and psychological burden on staff involved with withdrawing and withholding life-prolonging treatment should be recognised, and adequate support mechanisms need to be available and easily accessible before, during, and after decisions have been made.
It is worth noting, however, that early in the report is the statement:
“Whilst the BMA reiterates its opposition to active, intentional measures taken with the purpose of ending a patient’s life, it does not hold to the view that there is an absolute value in being alive regardless of the patient’s wishes or medical condition.”
It is also worth noting, in contrast to the Nuffield Council on Bioethics (see News), that the BMA still takes seriously the need for specialist input into statements about ethical issues. Although two thirds of the BMA Medical Ethics Committee are medical, the remaining third includes five ethicists and two lawyers.