End of life care: Adults who lack capacity to decide

Please see footnote⁸

15. If you assess that a patient lacks capacity to make a decision, you must:

1. (a) be clear what decisions about treatment and care have to be made
2. (b) check the patient’s medical record for any information suggesting that they have made a potentially legally binding advance decision or directive refusing treatment
3. (c) make enquiries as to whether someone else holds legal authority to decide which option would provide overall benefit for the patient (an attorney or other ‘legal proxy’⁹). You should bear in mind that the powers held by a legal proxy may not cover all healthcare decisions, so you should check the scope of their decision-making authority¹⁰
4. (d) take responsibility for deciding which treatment will provide overall benefit to the patient, when no legal proxy exists, and you are the doctor with responsibility for the patient’s care.¹¹ You must consult those close to the patient and members of the healthcare team to help you make your decisions.

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

1. (a) 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. (b) 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. (c) 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. (d) 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. (e) 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. (f) 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. (g) 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. (h) 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. (i) 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 or 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.