Principles

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 its 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 assess that a patient lacks capacity⁸  to make a decision, you must:

a. be clear what specific decisions about treatment and care need to be made

b. check who has the responsibility to decide which option would be of overall benefit to the patient and make sure that reasonable steps are taken to find out:

1. whether there’s evidence of the patient’s previously expressed values and preferences that may be legally binding, such as an advance refusal of treatment
2. whether someone else has the legal authority to make the decision on the patient’s behalf or has been appointed to represent them. You should bear in mind that the powers held by a legal proxy⁹ may not cover all types of treatment, so you should check the scope of their decision-making authority¹⁰  

c. If there is no evidence of a legally binding advance refusal of treatment, and no one has legal authority to make this decision for the patient, then, if you have lead responsibility for the patient’s treatment and care, you are responsible for deciding what would be of overall benefit to them¹¹ . 

In doing this, if you must:

1. consult with those close to the patient and other members of the healthcare team, take account of their views about what the patient would want, and aim to reach agreement with them
2. consider which option aligns most closely with the patient’s needs, preferences, values and priorities
3. consider which option would be the least restrictive of the patient’s future options

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 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. The doctor 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, the doctor must make a judgement about its validity and its applicability to the current circumstances. If the doctor concludes 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, the doctor explains the relevant 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 treatment or care that the doctor doesn’t think would be of overall benefit to the patient, the doctor 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 doctors 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 the doctor still considers that the treatment or care would not serve the patient’s needs, then they should not provide it. But, they should explain their 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.