Patients who have capacity to decide
If a patient has capacity7 to make a decision for themselves, this is the decision-making model that applies:
- The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
- The doctor 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. 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.
- 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 the doctor or for no reason at all.
- If the patient asks for treatment or care that the doctor doesn’t think would be clinically appropriate, 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 the doctor 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, the doctor should explain their reasons to the patient and explore other options that might be available, including their right to seek a second opinion.
Adults who lack capacity to decide
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:
- 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
- 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:
- 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
- consider which option aligns most closely with the patient’s needs, preferences, values and priorities
- consider which option would be the least restrictive of the patient’s future options
Advice on children who lack capacity is in the section on neonates, children and young people.
Legal proxies include: a person holding a Lasting Power of Attorney (England and Wales) or Welfare Power of Attorney (Scotland), a court-appointed deputy (England and Wales) or a court-appointed guardian or intervener (Scotland). Northern Ireland currently has no provision for appointing legal proxies with power to make healthcare decisions.
Powers of attorney must be registered with the Offices of the Public Guardian in England and Wales and Scotland. Information is available on their websites. The role of the various legal proxies is explained in the codes of practice that support the relevant capacity laws – see the legal annex.
In these circumstances you will have legal authority to make decisions about treatment, under the Adults with Incapacity (Scotland) Act 2000 (subject to issuing a certificate of incapacity), or the Mental Capacity Act 2005(England and Wales), or the common law in Northern Ireland. See the legal annex.
Taking account of the considerations in paragraph 15, this is the decision-making model that applies if a patient lacks capacity:
- 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.
- 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.
- 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.)
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
The ‘carer’ for these purposes means the person supporting the patient and representing their interests in the consultation about their health and what might be needed in terms of any investigations, treatment or care.
The term ‘those close to the patient’ means anyone nominated by the patient, close relatives (including parents if the patient is a child), partners and close friends, paid or unpaid carers outside the healthcare team and independent advocates. It may include attorneys for property and financial affairs and other legal proxies, in some circumstances.
Who it is appropriate and practical to consult will depend on, for example, a patient’s previous request; what reasonable steps can be taken to consult within the time available before a decision must be made; and any duty to consult or prioritise specific people set out in relevant capacity laws or codes.
No one ‘willing or able’ generally means where there is no one close to the patient to consult or those available are unable or feel unable to participate in the decision making. The MCA Code of Practice gives more information.
Serious medical treatment is defined in the MCA Code of Practice, where the role of the IMCA is also set out.