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

Working with the principles and decision-making models  - cont.

Advance care planning

The benefits

50

As treatment and care towards the end of life are delivered by multi-disciplinary teams often working across local health, social care and voluntary sector services, you must plan ahead as much as possible to ensure timely access to safe, effective care and continuity in its delivery to meet the patient’s needs.

51

The emotional distress and other pressures inherent in situations in which patients are approaching the end of their life sometimes lead to misunderstandings and conflict between doctors and patients and those close to them, or between members of the healthcare team. However, this can usually be avoided through early, sensitive discussion and planning about how best to manage the patient’s care.

What to discuss

52

Patients whose death from their current condition is a foreseeable possibility are likely to want the opportunity (whether they are in a community or hospital setting) to decide what arrangements should be made to manage the final stages of their illness. This could include having access to palliative care, and attending to any personal and other matters that they consider important towards the end of their life.

53

If a patient in your care has a condition that will impair their capacity as it progresses, or is otherwise facing a situation in which loss or impairment of capacity is a foreseeable possibility, you should encourage them to think about what they might want for themselves should this happen, and to discuss their wishes and concerns with you and the healthcare team. Your discussions should cover:

  1. the patient’s wishes, preferences or fears in relation to their future treatment and care
  2. the feelings, beliefs or values that may be influencing the patient’s preferences and decisions
  3. the family members, others close to the patient or any legal proxies that the patient would like to be involved in decisions about their care
  4. interventions which may be considered or undertaken in an emergency, such as cardiopulmonary resuscitation (CPR), when it may be helpful to make decisions in advance
  5. the patient’s preferred place of care (and how this may affect the treatment options available)
  6. the patient’s needs for religious, spiritual or other personal support. 
54

Depending on the patient’s circumstances, it may also be appropriate to create opportunities for them to talk about what they want to happen after they die. Some patients will want to discuss their wishes in relation to the handling of their body, and their beliefs or values about organ or tissue donation.

55

You must approach all such discussions sensitively. If you are unsure how best to do this or how to respond to any non-clinical issues raised by the patient, you should refer to relevant guidelines on good practice in advance care planning. If the patient agrees, you should involve in the discussions other members of the healthcare team, people who are close to the patient, or an independent advocate.

When patients do not want to know

56

Some patients may not be ready to think about their future care, or may find the prospect of doing so too distressing. However, no-one else can make a decision on behalf of an adult who has capacity. If a patient asks you to make decisions on their behalf or wants to leave decisions to a relative, partner or friend, you should explain that it is important that they understand the options open to them, and what the treatment will involve. If they do not want this information, you should try to find out why.

57

If the patient still does not want to know in detail about their condition or the treatment, you should respect their wishes as far as possible. But you must explain the importance of providing at least the basic information they need in order to give valid consent to a proposed investigation or treatment. This is likely to include what the investigation or treatment aims to achieve and what it will involve. For example, whether a procedure is invasive; what level of pain or discomfort they might experience and what can be done to minimise it; what they should do to prepare for the investigation or treatment; and whether it involves any serious risks.

58

If the patient insists that they do not want even this basic information, you must explain the potential consequences of carrying out an investigation or treatment if their consent may be open to subsequent legal challenge. You must record the fact that the patient has declined relevant information and who they asked to make the decision about treatment. You must also make it clear that they can change their mind and have more information at any time.

When others want information to be withheld from the patient

59

Apart from circumstances in which a patient refuses information, you should not withhold information necessary for making decisions (including when asked by someone close to the patient), unless you believe that giving it would cause the patient serious harm. In this context ‘serious harm’ means more than that the patient might become upset or decide to refuse treatment. If you withhold information from the patient, you must record your reasons for doing so in the medical records, and be prepared to explain and justify your decision. You should regularly review your decision and consider whether you could give information to the patient later, without causing them serious harm.

Formalising a patient's wishes

60

If a patient wants to nominate someone to make decisions on their behalf if they lose capacity, or if they want to make an advance refusal of a particular treatment, you should explain that there may be ways to formalise these wishes, such as appointing an attorney or making a written advance decision or directive.23 You should support a patient who has decided to take these steps. You should provide advice on the clinical issues and recommend that they get independent advice on how to formalise their wishes.

23

The Mental Capacity Act 2005 (MCA) and the Adults Within Incapacity (Scotland) Act 2000 legislation make provision for adults to grant powers of attorney to make healthcare decisions. Northern Ireland proposes similar legislation. The MCA sets out statutory requirements for making advance refusals of life-prolonging treatments. See the legal annex.

Recording and sharing the advance care plan

61

You must make a record of the discussion and of the decisions made. You should make sure that a record of the advance care plan is made available to the patient, and is shared with others involved in their care (provided that the patient agrees), so that everyone is clear about what has been agreed. (See also paragraphs 22 - 23 about working in teams and across service boundaries.) If a patient makes an advance refusal of treatment, you should encourage them to share this information with those close to them, with other doctors, and with key health and social care staff involved in their care.

22

Most treatment and care at the end of life is delivered by multi-disciplinary and multi-agency teams, working together to meet the needs of patients as they move between different health and social care settings and access different services. This can include GP practices, local care homes, pharmacies, hospices, ambulance services, local hospitals, and local authority and voluntary sector support services. You must communicate effectively with other members of the health and social care team or teams involved in a patient’s care, sharing with them the information necessary to provide the patient with safe, effective and timely care. (See paragraphs 75 - 77 on recording and communicating decisions.) When considering options for treatment and care, and reviewing the patient’s progress, you should consult other members of the team who may have information about the patient or relevant knowledge and experience that may help in managing or treating the patient’s condition.

23

You must make sure that you understand the scope and responsibilities of your own role in the healthcare team, the roles and specialist skills of other health and social care team members, and the lines of accountability for the patient’s care.17 You should take steps to clarify any ambiguity about your own or others’ responsibilities with your employing or contracting organisation if you have concerns that the ambiguity may compromise patient safety.18 

62

You must bear in mind that advance care plans need to be reviewed and updated as the patient’s situation or views change.

Acting on advance requests for treatment

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.

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.
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.

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.
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).

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.

Acting on advance refusals of treatment

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.

When advance refusals are binding

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.

24

The code of practice supporting the Mental Capacity Act 2005, which uses the legal term ‘advance decision’, sets out detailed criteria that determine when advance decisions about life-prolonging treatments are legally binding – see the legal annex.

25

The code of practice supporting the Adults with Incapacity (Scotland) Act 2000, which uses the legal term ‘advance directive’, gives advice on their legal status and how advance directives should be taken into account in decisions about treatment.

26

In Northern Ireland there is no statutory provision or case law covering advance refusals, but it is likely that the principles established in English case law precedents would be followed.

Non-binding advance refusals

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.

Assessing the validity of advance refusals

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.
27

These requirements are set out in the MCA and its Code of Practice, Chapter 9.

Assessing the applicability of advance refusals

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.

Doubt or disagreement about the status of advance refusals

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.