Clinically assisted nutrition and hydration

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

1. You and the patient make an assessment of the patient’s condition, taking into account their medical history, views, experience and knowledge. 
2. You uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which options for investigating, treating or managing the patient’s condition (including the option to take no action) are clinically appropriate. You explain the options to the patient, setting out the potential benefits, burdens and risks of each option. You may recommend a particular option which you believe to be best for the patient, but you must not put pressure on the patient to accept your 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 between the options. They also have the right to accept or refuse an option for a reason that may seem irrational to you or for no reason at all.
4. If the patient asks for treatment or care that you don’t think would be clinically appropriate, you should explore their reasons for requesting it, their understanding of what it would involve, and their expectations about the likely outcome. This discussion will help you take account of factors that are significant to the patient and assess whether providing the treatment or care could serve the patient’s needs. If after discussion you still consider that the treatment or care would not serve the patient’s needs, then should not provide it. But, you should explain your reasons to the patient and explore other options that might be available, including their right to seek a second opinion. 

Taking account of the considerations in paragraph 15, this is the decision-making model that applies if a patient lacks capacity and you have lead responsibility for the patient’s treatment and care:

1. You, with the patient (if they are able to contribute) and those who care for the patient¹² , makes an assessment of the patient’s condition taking into account the patient’s medical history and the patient and carer’s (or carers’) knowledge and experience of the condition. 
2. You uses specialist knowledge, experience and clinical judgement, together with any evidence about the patient’s views (including any advance statement and/ or advance care plan), to identify which investigations, treatments or options for managing the patient’s condition (including the option to take no action) are in the patient’s clinical interests and to decide which of those options is likely to result in their overall benefit.
3. If the patient has made an advance refusal of treatment, you must make a judgement about its validity and its applicability to the current circumstances. If  you conclude that the advance refusal 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 refusals.)
4. If an attorney or other legal proxy has been appointed to make healthcare decisions for the patient, you explain the relevant options to the legal proxy (as you would do for a patient with capacity), setting out the benefits, burdens and risks of each option. You may recommend a particular option which you 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.  You 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, you 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, you 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 you are responsible for making the decision, you 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, you will explain the issues; seek information about the patient’s circumstances; and seek views about the patient’s wishes, preferences, feelings, beliefs and values. You 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. You 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 , you must approach your 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, you 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 treatment or care that you don't think would be of overall benefit to the patient, you should explore their reasons for requesting it, their understanding of what it would involve, and their expectations about the likely outcome. This discussion will help you take account of factors that are significant to the patient and assess whether providing the treatment or care could serve the patient’s needs. If after discussion you still consider that the treatment or care would not serve the patient’s needs, then you should not provide it. But, you should explain your reasons to the proxy or other person involved in the decision making and explore other options that might be available, including their right to seek 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.

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 whether it could be in their interests. For example, it may not be in a patient’s interests to provide potentially life prolonging but burdensome treatment in the last days of their life when the focus of care is changing from active treatment to managing the patient’s symptoms and keeping them comfortable.

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.

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)

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.

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 being in their interests. You should satisfy yourself that the patient has sufficient information and support so that they are not disadvantaged in accessing beneficial treatment and care.

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 Decision making and consent.

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.

If you have lead responsibility for the patient’s treatment and care, 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.

If, having taken these steps, there is still disagreement about a significant decision, you must follow any formal steps to resolve the disagreement that are required by law or set out in the relevant code of practice. You should make sure you are aware of the different people you must consult, their different decision-making roles and the weight you must attach to their views. You should consider seeking legal advice and may need to apply to an appropriate court or statutory body for review or for an independent ruling. Your patient, those close to them and anyone appointed to act for them should be informed as early as possible of any decision to start legal proceedings, so they have the opportunity to participate or be represented.

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. 

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.