Consent: patients and doctors making decisions together

Part 3: Capacity issues

The legal framework

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Making decisions about treatment and care for patients who lack capacity is governed in England and Wales by the Mental Capacity Act 2005, and in Scotland by the Adults with Incapacity (Scotland) Act 2000. The legislation sets out the criteria and procedures to be followed in making decisions when patients lack capacity to make these decisions for themselves. It also grants legal authority to certain people to make decisions on behalf of patients who lack capacity.13 In Northern Ireland, there is currently no relevant primary legislation; and decision-making for patients without capacity is governed by the common law, which requires that decisions must be made in a patient’s best interests.14 There is more information about legislation and case law in the legal annex to this guidance.15 

13

Individuals with powers of attorney that cover health and welfare decisions (England, Wales and Scotland), court appointed deputies (England and Wales) or guardians with welfare powers (Scotland) can, in certain circumstances, make decisions on behalf of a person who does not have capacity. See the legal annex for more information.

14

In Northern Ireland, there is currently no legal provision for someone else to consent to treatment on behalf of patients without capacity.

15

If you are treating a patient who lacks capacity and who also has a mental disorder, you should be aware of how the mental health legislation across the UK interacts with the law on mental capacity. See Other sources of information and guidance.

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The guidance that follows is consistent with the law across the UK. It is important that you keep up to date with, and comply with, the laws and codes of practice that apply where you work. If you are unsure about how the law applies in a particular situation, you should consult your defence body or professional association, or seek independent legal advice.

Presumption of capacity

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You must work on the presumption that every adult patient has the capacity to make decisions about their care, and to decide whether to agree to, or refuse, an examination, investigation or treatment. You must only regard a patient as lacking capacity once it is clear that, having been given all appropriate help and support, they cannot understand, retain, use or weigh up the information needed to make that decision, or communicate their wishes.

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You must not assume that a patient lacks capacity to make a decision solely because of their age, disability, appearance, behaviour, medical condition (including mental illness), their beliefs, their apparent inability to communicate, or the fact that they make a decision that you disagree with.

Maximising a patients ability to make decisions

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A patient’s ability to make decisions may depend on the nature and severity of their condition, or the difficulty or complexity of the decision. Some patients will always be able to make simple decisions, but may have difficulty if the decision is complex or involves a number of options. Other patients may be able to make decisions at certain times but not others, because fluctuations in their condition impair their ability to understand, retain or weigh up information, or communicate their wishes.

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If a patient’s capacity is affected in this way, you must follow the guidance in paragraphs 18–21, taking particular care to give the patient the time and support they need to maximise their ability to make decisions for themselves. For example, you will need to think carefully about the extra support needed by patients with dementia or learning disabilities.

68

You must take all reasonable steps to plan for foreseeable changes in a patient’s capacity to make decisions. This means that you should:

  1. discuss treatment options in a place and at a time when the patient is best able to understand and retain the information
  2. ask the patient if there is anything that would help them remember information, or make it easier to make a decision; such as bringing a relative, partner, friend, carer or advocate to consultations, or having written or audio information about their condition or the proposed investigation or treatment
  3. speak to those close to the patient and to other healthcare staff about the best ways of communicating with the patient, taking account of confidentiality issues.
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If a patient is likely to have difficulty retaining information, you should offer them a written record of your discussions, detailing what decisions were made and why.

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You should record any decisions that are made, wherever possible while the patient has capacity to understand and review them. You must bear in mind that advance refusals of treatment may need to be recorded, signed and witnessed.

Assessing capacity

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You must assess a patient’s capacity to make a particular decision at the time it needs to be made. You must not assume that because a patient lacks capacity to make a decision on a particular occasion, they lack capacity to make any decisions at all, or will not be able to make similar decisions in the future.

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You must take account of the advice on assessing capacity in the Codes of Practice that accompany the Mental Capacity Act 2005 and the Adults with Incapacity (Scotland) Act 2000 and other relevant guidance. If your assessment is that the patient’s capacity is borderline, you must be able to show that it is more likely than not that they lack capacity.

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If your assessment leaves you in doubt about the patient’s capacity to make a decision, you should seek advice from:

  1. nursing staff or others involved in the patient’s care, or those close to the patient, who may be aware of the patient’s usual ability to make decisions and their particular communication needs
  2. colleagues with relevant specialist experience, such as psychiatrists, neurologists, or speech and language therapists.
74

If you are still unsure about the patient’s capacity to make a decision, you must seek legal advice with a view to asking a court to determine capacity.

Making decisions when a patient lacks capacity

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In making decisions about the treatment and care of patients who lack capacity, you must:

  1. make the care of your patient your first concern
  2. treat patients as individuals and respect their dignity
  3. support and encourage patients to be involved, as far as they want to and are able, in decisions about their treatment and care
  4. treat patients with respect and not discriminate against them.
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You must also consider:

  1. whether the patient’s lack of capacity is temporary or permanent
  2. which options for treatment would provide overall clinical benefit for the patient
  3. which option, including the option not to treat, would be least restrictive of the patient’s future choices
  4. any evidence of the patient’s previously expressed preferences, such as an advance statement or decision16 
  5. the views of anyone the patient asks you to consult, or who has legal authority to make a decision on their behalf,17 or has been appointed to represent them18 
  6. the views of people close to the patient on the patient’s preferences, feelings, beliefs and values, and whether they consider the proposed treatment to be in the patient’s best interests19 
  7. what you and the rest of the healthcare team know about the patient’s wishes, feelings, beliefs and values.
16

See chapter 2 of the Code of Practice for persons authorised to carry out medical treatment or research under Part 5 of the Adults with Incapacity (Scotland) Act 2000, or chapter 9 of the Mental Capacity Act 2005 Code of Practice.

17

Welfare attorneys and court appointed guardians (Scotland), holders of lasting powers of attorney and court-appointed deputies (England and Wales).

18

Independent Mental Capacity Advocates in England and Wales.

19

In England and in Wales, if you are proposing serious medical treatment (see paragraphs 10.42–10.50 of the Mental Capacity Act 2005 Code of Practice) and there is nobody other than paid staff who can represent the views of a patient who lacks the capacity to consent to that serious medical treatment, and that treatment is provided or funded by the NHS, an Independent Mental Capacity Advocate must be instructed to represent and support the patient.

Resolving disagreements

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You should aim to reach a consensus about a patient’s treatment and care, allowing enough time for discussions with those who have an interest in the patient’s welfare. Sometimes disagreements arise between members of the healthcare team, or between the healthcare team and those close to the patient. It is usually possible to resolve them, for example by involving an independent advocate, consulting a more experienced colleague, holding a case conference, or using local mediation services. You should take into account the different decision-making roles and authority of those you consult, and the legal framework for resolving disagreements.20 

20

See chapter 3 of the Code of Practice for persons authorised to carry out medical treatment or research under Part 5 of the Adults with Incapacity (Scotland) Act 2000, or chapter 15 of the Mental Capacity Act 2005 Code of Practice.

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If, having taken these steps, there is still significant disagreement, you should seek legal advice on applying to the appropriate court or statutory body for review or for an independent ruling. Patients, 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.

The scope of treatment in emergencies

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When an emergency arises in a clinical setting21 and it is not possible to find out a patient’s wishes, you can treat them without their consent, provided the treatment is immediately necessary to save their life or to prevent a serious deterioration of their condition. The treatment you provide must be the least restrictive of the patient’s future choices. For as long as the patient lacks capacity, you should provide ongoing care on the basis of the guidance in paragraphs 75–76. If the patient regains capacity while in your care, you should tell them what has been done, and why, as soon as they are sufficiently recovered to understand.

21

Paragraph 26 of Good medical practice says says that doctors must offer assistance in an emergency, wherever it arises, taking account of their own safety, their competence and the availability of other options for care.