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Treatment and care towards the end of life: good practice in decision making

Clinically assisted nutrition and hydration

112

Clinically assisted nutrition includes intravenous feeding, and feeding by nasogastric tube and by percutaneous endoscopic gastrostomy (PEG) and radiologically inserted gastrostomy (RIG) feeding tubes through the abdominal wall. All these means of providing nutrition also provide fluids necessary to keep patients hydrated. Clinically assisted hydration can also be provided by intravenous or subcutaneous infusion of fluids through a ‘drip’. The terms ‘clinically assisted nutrition’ and ‘clinically assisted hydration’ do not refer to help given to patients to eat or drink, for example by spoon feeding.

113

Providing nutrition and hydration by tube or drip may provide symptom relief, or prolong or improve the quality of the patient’s life; but they may also present problems. The current evidence about the benefits, burdens and risks of these techniques as patients approach the end of life is not clear-cut. This can lead to concerns that patients who are unconscious or semi-conscious may be experiencing distressing symptoms and complications, or otherwise be suffering either because their needs for nutrition or hydration are not being met or because attempts to meet their perceived needs for nutrition or hydration may be causing them avoidable suffering.

114

Nutrition and hydration provided by tube or drip are regarded in law as medical treatment32, and should be treated in the same way as other medical interventions. Nonetheless, some people see nutrition and hydration, whether taken orally or by tube or drip, as part of basic nurture for the patient that should almost always be provided. For this reason it is especially important that you listen to and consider the views of the patient and of those close to them (including their cultural and religious views) and explain the issues to be considered, including the benefits, burdens and risks of providing clinically assisted nutrition and hydration. You should make sure that patients, those close to them and the healthcare team understand that, when clinically assisted nutrition or hydration would be of overall benefit, it will always be offered; and that if a decision is taken not to provide clinically assisted nutrition or hydration, the patient will continue to receive high-quality care, with any symptoms addressed.

32

Airedale NHS Trust v Bland [1993] 1 All ER 821.

115

If disagreement arises between you and the patient (or those close to a patient who lacks capacity), or you and other members of the healthcare team, or between the team and those close to the patient, about whether clinically assisted nutrition or hydration should be provided, you should seek resolution following the guidance in paragraphs 47 - 49. You should make sure that the patient, or someone acting on their behalf, is informed and given advice on the patient’s rights and how to access their own legal advice or representation.

47

You should aim to reach a consensus about what treatment and care would be of overall benefit to a patient who lacks capacity. Disagreements may arise between you and those close to the patient, or between you and members of the healthcare team, or between the healthcare team and those close to the patient. Depending on the seriousness of any disagreement, it is usually possible to resolve it; for example, by involving an independent advocate, seeking advice from a more experienced colleague, obtaining a second opinion, holding a case conference, or using local mediation services. In working towards a consensus, you should take into account the different decision-making roles and authority of those you consult, and the legal framework for resolving disagreements.

48

If, having taken these steps, there is still significant disagreement, you should seek legal advice on applying to the appropriate statutory body for review (Scotland) or appropriate court for an independent ruling.22 The patient, those authorised to act for them and those close to them should be informed, as early as possible, of any decision to start such proceedings, so that they have the opportunity to participate or be represented.

49

In situations in which a patient with capacity to decide requests a treatment and does not accept your view that the treatment would not be clinically appropriate, the steps suggested above for resolving disagreement may also be helpful.

Patients who have capacity

116

If you consider that a patient is not receiving adequate nutrition or hydration by mouth, you should follow the decision model in paragraph 14. You must assess the patient’s nutrition and hydration needs separately and offer the patient those treatments you consider to be clinically appropriate because, for example, they would provide symptom relief or would be likely to prolong the patient’s life. You must explain to the patient the benefits, burdens and risks associated with the treatments, so that the patient can make a decision about whether to accept them.33 

14

If a patient has capacity7  to make a decision for themselves, this is the decision-making model that applies:

  1. The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
  2. The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are clinically appropriate and likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, burdens and risks of each option. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.
  3. The patient weighs up the potential benefits, burdens and risks of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor or for no reason at all.
  4. If the patient asks for a treatment that the doctor considers would not be clinically appropriate for them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be clinically appropriate to the patient, they do not have to provide the treatment. They should explain their reasons to the patient and explain any other options that are available, including the option to seek a second opinion or access legal representation. 
33

Additional considerations apply to decisions about clinically assisted nutrition and hydration involving children and young people with capacity (see paragraphs 90 - 91).

117

If you assess that clinically assisted nutrition or hydration would not be clinically appropriate, you must monitor the patient’s condition and reassess the benefits, burdens and risks of providing clinically assisted nutrition or hydration as the patient’s condition changes. If a patient asks you to provide nutrition or hydration by tube or drip, you should discuss the issues with the patient and explore the reasons for their request. You must reassess the benefits, burdens and risks of providing the treatment requested, giving weight to the patient’s wishes and values. When the benefits, burdens and risks are finely balanced, the patient’s request will usually be the deciding factor. However, if after discussion you still consider that the treatment would not be clinically appropriate, you do not have to provide it. But you should explain your reasons to the patient and explain any other options that are available, including the option to seek a second opinion.

Adult patients who lack capacity

118

If a patient lacks capacity34 and cannot eat or drink enough to meet their nutrition or hydration needs, you must assess whether providing clinically assisted nutrition or hydration would be of overall benefit to them, following the decision model in paragraph 16 and guidance in paragraphs 40 - 48. Clinically assisted nutrition or hydration will usually be of overall benefit, if for example they prolong life or provide symptom relief. You must assess the patient’s nutrition and hydration needs separately. You must monitor the patient’s condition, and reassess the benefits, burdens and risks of providing clinically assisted nutrition or hydration as the patient’s condition changes.

16

Taking account of the considerations in paragraph 15, this is the decision-making model that applies if a patient lacks capacity:

  1. The doctor, with the patient (if they are able to contribute) and the patient’s carer12, makes an assessment of the patient’s condition taking into account the patient’s medical history and the patient and carer’s knowledge and experience of the condition.
  2. The doctor uses specialist knowledge, experience and clinical judgement, together with any evidence about the patient’s views (including advance statements, decisions or directives), to identify which investigations or treatments are clinically appropriate and are likely to result in overall benefit for the patient.
  3. If the patient has made an advance decision or directive refusing a particular treatment, the doctor must make a judgement about its validity and its applicability to the current circumstances. If the doctor concludes that the decision or directive is legally binding, it must be followed in relation to that treatment. Otherwise it should be taken into account as information about the patient’s previous wishes. (See paragraphs 67 - 74 on assessing the legal status of advance decisions and directives.)
  4. If an attorney or other legal proxy has been appointed to make healthcare decisions for the patient, the doctor explains the options to the legal proxy (as they would do for a patient with capacity), setting out the benefits, burdens and risks of each option. The doctor may recommend a particular option which they believe would provide overall benefit for the patient. The legal proxy weighs up these considerations and any non-clinical issues that are relevant to the patient’s treatment and care, and, considering which option would be least restrictive of the patient’s future choices, makes the decision about which option will be of overall benefit. The doctor should offer support to the legal proxy in making the decision, but must not pressurise them to accept a particular recommendation.
  5. As well as advising the legal proxy, the doctor must involve members of the healthcare team and those close to the patient13 as far as it is practical and appropriate to do so14, as they may be able to contribute information about the patient that helps the proxy to reach a decision. If the legal proxy does not have the power to make a particular decision, the doctor must take account of the proxy’s views (as someone close to the patient) in the process of reaching a decision.
  6. In circumstances in which there is no legal proxy with authority to make a particular decision for the patient, and the doctor is responsible for making the decision, the doctor must consult with members of the healthcare team and those close to the patient (as far as it is practical and appropriate to do so) before reaching a decision. When consulting, the doctor will explain the issues; seek information about the patient’s circumstances; and seek views about the patient’s wishes, preferences, feelings, beliefs and values. The doctor may also explore which options those consulted might see as providing overall benefit for the patient, but must not give them the impression they are being asked to make the decision. The doctor must take the views of those consulted into account in considering which option would be least restrictive of the patient’s future choices and in making the final decision about which option is of overall benefit to the patient.
  7. In England and Wales, if there is no legal proxy, close relative or other person who is willing or able15 to support or represent the patient and the decision involves serious medical treatment16, the doctor must approach their employing or contracting organisation about appointing an Independent Mental Capacity Advocate (IMCA), as required by the Mental Capacity Act 2005 (MCA). The IMCA will have authority to make enquiries about the patient and contribute to the decision by representing the patient’s interests, but cannot make a decision on behalf of the patient.
  8. If a disagreement arises about what would be of overall benefit, the doctor must attempt to resolve the issues following the approach set out in paragraphs 47 - 48.
  9. If a legal proxy or other person involved in the decision making asks for a treatment to be provided which the doctor considers would not be clinically appropriate and of overall benefit to the patient, the doctor should explain the basis for this view and explore the reasons for the request. If after discussion the doctor still considers that the treatment would not be clinically appropriate and of overall benefit, they are not obliged to provide it. However, as well as explaining the reasons for their decision, the doctor should explain to the person asking for the treatment the options available to them. These include the option of seeking a second opinion, applying to the appropriate statutory body for a review (Scotland), and applying to the appropriate court for an independent ruling. For further guidance on acting on advance requests for treatment see paragraphs 63 - 66.
40

The benefits of a treatment that may prolong life, improve a patient’s condition or manage their symptoms must be weighed against the burdens and risks for that patient, before you can reach a view about its overall benefit. For example, it may be of no overall benefit to provide potentially life prolonging but burdensome treatment in the last days of a patient’s life when the focus of care is changing from active treatment to managing the patient’s symptoms and keeping them comfortable.

41

The benefits, burdens and risks associated with a treatment are not always limited to clinical considerations, and you should be careful to take account of the other factors relevant to the circumstances of each patient.

42

Patients who have capacity will reach their own view about what personal factors they wish to consider and the weight they wish to attach to these alongside the clinical considerations. (See the model for decision making in paragraph 14)

43

In the case of patients who lack capacity, their legal proxy will make these judgements with advice from you and others involved in the patient’s care. If you are responsible for making the decision about overall benefit, those close to the patient and members of the healthcare team are likely to have knowledge about the patient’s wishes, values and preferences and any other personal factors that should be taken into account. (See the model for decision making in paragraph 16.) You may also find information about the patient’s wishes in their notes, advance care plan or other record, such as an advance request for or refusal of treatment.

44

Some patients, and those close to them, may not be aware of the range of services and treatments available to them, which could have a bearing on the options they would see as offering overall benefit. You should satisfy yourself that the patient has sufficient information and support so that they are not disadvantaged in accessing beneficial treatment and care.

45

It may be particularly difficult to arrive at a view about the overall benefit of a treatment if the patient has problems in communicating their wishes and preferences, or lacks capacity. In such cases you must not simply rely on your own values or on those of the people consulted about the patient. You should take all reasonable steps to maximise the patient’s ability to participate in the decision-making process. You can find detailed advice about how to approach this in Consent: patients and doctors making decisions together.

46

You must be careful not to rely on your personal views about a patient’s quality of life and to avoid making judgements based on poorly informed or unfounded assumptions about the healthcare needs of particular groups, such as older people and those with disabilities.

47

You should aim to reach a consensus about what treatment and care would be of overall benefit to a patient who lacks capacity. Disagreements may arise between you and those close to the patient, or between you and members of the healthcare team, or between the healthcare team and those close to the patient. Depending on the seriousness of any disagreement, it is usually possible to resolve it; for example, by involving an independent advocate, seeking advice from a more experienced colleague, obtaining a second opinion, holding a case conference, or using local mediation services. In working towards a consensus, you should take into account the different decision-making roles and authority of those you consult, and the legal framework for resolving disagreements.

48

If, having taken these steps, there is still significant disagreement, you should seek legal advice on applying to the appropriate statutory body for review (Scotland) or appropriate court for an independent ruling.22 The patient, those authorised to act for them and those close to them should be informed, as early as possible, of any decision to start such proceedings, so that they have the opportunity to participate or be represented.

34

General advice on children who lack capacity is in the section on neonates, children and young people. Decisions about clinically assisted nutrition and hydration involving neonates and infants are discussed at paragraph 106

Incapacitated adults: not expected to die in hours or days

119

If a patient is in the end stage of a disease or condition, but you judge that their death is not expected within hours or days, you must provide clinically assisted nutrition or hydration if it would be of overall benefit to them, taking into account the patient’s beliefs and values, any previous request for nutrition or hydration by tube or drip and any other views they previously expressed about their care. The patient’s request must be given weight and, when the benefits, burdens and risks are finely balanced, will usually be the deciding factor.

120

You must assess the patient’s nutrition and hydration needs separately. If you judge that the provision of clinically assisted nutrition or hydration would not be of overall benefit to the patient, you may conclude that the treatment should not be started at that time or should be withdrawn. You should explain your view to the patient, if appropriate, and those close to them, and respond to any questions or concerns they express.

121

In these circumstances you must make sure that the patient’s interests have been thoroughly considered. This means you must take all reasonable steps to get a second opinion from a senior clinician (who might be from another discipline) who has experience of the patient’s condition but who is not already directly involved in the patient’s care. This opinion should be based on an examination of the patient by the clinician. In exceptional circumstances, if this is not possible for practical reasons, you must still get advice from a colleague, for example by telephone, having given them up-to-date information about the patient’s condition. You should also consider seeking legal advice.35 

35

You can discuss the options with your defence organisation or your employer’s legal department. In Northern Ireland, where there is currently no primary legislation or relevant case law pertaining to the jurisdiction, it may be particularly important to do so before acting on decisions.

122

If you reach a consensus that clinically assisted nutrition or hydration would not be of overall benefit to the patient and the treatment is withdrawn or not started, you must make sure that the patient is kept comfortable and that any distressing symptoms are addressed. You must monitor the patient’s condition and be prepared to reassess the benefits, burdens and risks of providing clinically assisted nutrition or hydration in light of changes in their condition. If clinically assisted nutrition or hydration is started or reinstated after a later assessment, and you subsequently conclude that it would not be of overall benefit to continue with the treatment, you must seek a second opinion (or, if this is not possible, seek advice), following the advice in paragraph 121.

Incapacitated adults: expected to die in hours or days

123

If a patient is expected to die within hours or days, and you consider that the burdens or risks of providing clinically assisted nutrition or hydration outweigh the benefits they are likely to bring, it will not usually be appropriate to start or continue treatment. You must consider the patient’s needs for nutrition and hydration separately.

124
If a patient has previously requested that nutrition or hydration be provided until their death, or those close to the patient are sure that this is what the patient wanted, the patient’s wishes must be given weight and, when the benefits, burdens and risks are finely balanced, will usually be the deciding factor.
125

You must keep the patient’s condition under review, especially if they live longer than you expected. If this is the case, you must reassess the benefits, burdens and risks of providing clinically assisted nutrition or hydration, as the patient’s condition changes.

Patients in a persistent vegetative state or similar condition

126

If you are considering withdrawing nutrition or hydration from a patient in PVS or a condition closely resembling PVS, the courts in England, Wales and Northern Ireland currently require that you approach them for a ruling. The courts in Scotland have not specified such a requirement, but you should seek legal advice on whether a court ruling may be necessary in an individual case.

Conscientious objection

127

If you have a conscientious objection to withdrawing, or not providing, clinically assisted nutrition or hydration, you should follow the guidance in paragraphs 79 - 80.

79

You can withdraw from providing care if your religious, moral or other personal beliefs about providing life-prolonging treatment lead you to object to complying with:

  1. a patient’s decision to refuse such treatment, or
  2. a decision that providing such treatment is not of overall benefit to a patient who lacks capacity to decide.

However, you must not do so without first ensuring that arrangements have been made for another doctor to take over your role. It is not acceptable to withdraw from a patient’s care if this would leave the patient or colleagues with nowhere to turn. Refer to our guidance on Personal beliefs and medical practice (2013) for more information. 

80

If you disagree with a decision to withdraw or not to start a life-prolonging treatment on the basis of your clinical judgement about whether the treatment should be provided, you should follow the guidance in paragraphs 47 - 48 about resolving disagreements.