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Treatment and care towards the end of life: good practice in decision making

Decision-making models

Patients who have capacity to decide

14

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

  1. The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
  2. The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are clinically appropriate and likely to result in overall benefit for the patient. 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.
  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 whether to accept any of the options and, if so, which. 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.
  4. If the patient asks for a treatment that the doctor considers would not be clinically appropriate for them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be clinically appropriate to the patient, they do not have to provide the treatment. They should explain their reasons to the patient and explain any other options that are available, including the option to seek a second opinion or access legal representation. 
7

Additional considerations apply to children and young people who have capacity to decide – see the section on neonates, children and young people at paragraphs 90 - 108. 

Adults who lack capacity to decide

15

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

  1. be clear what decisions about treatment and care have to be made
  2. 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. 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. 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. 
8

Advice on children who lack capacity is in the section on neonates, children and young people.

9

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.

10

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.

11

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.

16

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 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. 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. 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. 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. 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 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 for 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.
67

Some patients worry that towards the end of their life they may be given medical treatments that they do not want. So they may want to make their wishes clear about particular treatments in circumstances that might arise in the course of their future care. When discussing any proposed advance refusal, you should explain to the patient how such refusals would be taken into account if they go on to lose capacity to make decisions about their care.

68

If a patient lacks capacity and information about a written or verbal advance refusal of treatment is recorded in their notes or is otherwise brought to your attention, you must bear in mind that valid and applicable advance refusals must be respected. A valid advance refusal that is clearly applicable to the patient’s present circumstances will be legally binding in England and Wales24 (unless it relates to life-prolonging treatment, in which case further legal criteria must be met). Valid and applicable advance refusals are potentially binding in Scotland25 and Northern Ireland26, although this has not yet been tested in the courts.

69

Written and verbal advance refusals of treatment that are not legally binding, should be taken into account as evidence of the person’s wishes when you are assessing whether a particular treatment would be of overall benefit to them.

70

If you are the clinician with lead responsibility for the patient’s care, you should assess both the validity and the applicability of any advance refusal of treatment that is recorded in the notes or that has otherwise been brought to your attention. The factors you should consider are different in the four UK countries, reflecting differences in the legal framework (see the legal annex). However, in relation to validity, the main considerations are that:

  1.  the patient was an adult when the decision was made (16 years old or over in Scotland, 18 years old or over in England, Wales and Northern Ireland)
  2. the patient had capacity to make the decision at the time it was made (UK wide)
  3. the patient was not subject to undue influence in making the decision (UK wide)
  4. the patient made the decision on the basis of adequate information about the implications of their choice (UK wide)
  5. if the decision relates to treatment that may prolong life it must be in writing, signed and witnessed, and include a statement that it is to apply even if the patient’s life is at stake (England and Wales only27)
  6. the decision has not been withdrawn by the patient (UK wide)
  7. the patient has not appointed an attorney, since the decision was made, to make such decisions on their behalf (England, Wales and Scotland)
  8. more recent actions or decisions of the patient are clearly inconsistent with the terms of their earlier decision, or in some way indicate they may have changed their mind.
71

In relation to judgements about applicability, the following considerations apply across the UK:

  1. whether the decision is clearly applicable to the patient’s current circumstances, clinical situation and the particular treatment or treatments about which a decision is needed
  2. whether the decision specifies particular circumstances in which the refusal of treatment should not apply
  3. how long ago the decision was made and whether it has been reviewed or updated (this may also be a factor in assessing validity)
  4. whether there are reasonable grounds for believing that circumstances exist which the patient did not anticipate and which would have affected their decision if anticipated, for example any relevant clinical developments or changes in the patient’s personal circumstances since the decision was made.
72

Advance refusals of treatment often do not come to light until a patient has lost capacity. In such cases, you should start from a presumption that the patient had capacity when the decision was made, unless there are grounds to believe otherwise.

73

If there is doubt or disagreement about the validity or applicability of an advance refusal of treatment, you should make further enquiries (if time permits) and seek a ruling from the court if necessary. In an emergency, if there is no time to investigate further, the presumption should be in favour of providing treatment, if it has a realistic chance of prolonging life, improving the patient’s condition, or managing their symptoms.

74

If it is agreed, by you and those caring for the patient, that an advance refusal of treatment is invalid or not applicable, the reasons for reaching this view should be documented.

47

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.

48

If, having taken these steps, there is still significant disagreement, you should seek legal advice on applying to the appropriate statutory body for review (Scotland) or appropriate court for an independent ruling.22 The patient, 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.

63

When planning ahead, some patients worry that they will be unreasonably denied certain treatments towards the end of their life, and so they may wish to make an advance request for those treatments. Some patients approaching the end of life want to retain as much control as possible over the treatments they receive and may want a treatment that has some prospects of prolonging their life, even if it has significant burdens and risks.

64

When responding to a request for future treatment, you should explore the reasons for the request and the degree of importance the patient attaches to the treatment. You should explain how decisions about the overall benefit of the treatment would be influenced by the patient’s current wishes if they lose capacity (see the model in paragraph 16). You should make clear that, although future decisions cannot be bound by their request for a particular treatment, their request will be given weight by those making the decision.

65

If a patient has lost capacity to decide, you must provide any treatment you assess to be of overall benefit to the patient. When assessing overall benefit, you should take into account the patient’s previous request, what you know about their other wishes and preferences, and the goals of care at that stage (for example, whether the focus has changed to palliative care), and you should consult the patient’s legal proxy or those close to the patient, as set out in the decision-making model in paragraph 16. The patient’s previous request must be given weight and, when the benefits, burdens and risks are finely balanced, will usually be the deciding factor.

66

If disagreement arises between you and the patient’s legal proxy, those close to the patient, or members of the healthcare team, about what would be of overall benefit, you must take steps to resolve the disagreement (see paragraphs 47 - 48).

12

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.

13

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.

14

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.

15

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.

16

Serious medical treatment is defined in the MCA Code of Practice, where the role of the IMCA is also set out.