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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 

Role of relatives, partners and others close to the patient

17

The people close to a patient can play a significant role in ensuring that the patient receives high-quality care as they near the end of life, in both community and hospital settings. Many parents, other close relatives and partners, as well as paid and unpaid carers, will be involved in discussing issues with a patient, enabling them to make choices, supporting them to communicate their wishes, or participating directly in their treatment and care. In some cases, they may have been granted legal power by the patient, or the court, to make healthcare decisions when the patient lacks capacity to make their own choices.

18

It is important that you and other members of the healthcare team acknowledge the role and responsibilities of people close to the patient. You should make sure, as far as possible, that their needs for support are met and their feelings respected, although the focus of care must remain on the patient.

19

Those close to a patient may want or need information about the patient’s diagnosis and about the likely progression of the condition or disease, in order to help them provide care and recognise and respond to changes in the patient’s condition. If a patient has capacity to make decisions, you should check that they agree to you sharing this information. If a patient lacks capacity to make a decision about sharing information, it is reasonable to assume that, unless they indicate otherwise, they would want those closest to them to be kept informed of relevant information about their general condition and prognosis. (There is more guidance in our booklet on Confidentiality: good practice in handling patient information.) You should check whether a patient has nominated someone close to them to be kept informed and consulted about their treatment.

20

When providing information, you must do your best to explain clinical issues in a way the person can understand, and approach difficult or potentially distressing issues about the patient’s prognosis and care with tact and sensitivity. (See paragraphs 33 - 36 on addressing emotional difficulties and possible sources of support.)

33

Some members of the healthcare team, or people who are close to the patient, may find it more difficult to contemplate withdrawing a life-prolonging treatment than to decide not to start the treatment in the first place. This may be because of the emotional distress that can accompany a decision to withdraw life-prolonging treatment, or because they would feel responsible for the patient’s death. However, you should not allow these anxieties to override your clinical judgement and lead you either not to start treatment that may be of some benefit to the patient, or to continue treatment that is of no overall benefit.

34

You should explain to those close to the patient that, whatever decisions are made about providing particular treatments, the patient’s condition will be monitored and managed to ensure that they are comfortable and, as far as possible, free of pain and other distressing symptoms. You should also make clear that a decision to withdraw, or not to start a treatment will be reviewed in the light of changes in the clinical situation.

35

You should offer advice about any support that may be available for the patient, for those close to them and for members of the healthcare team, if they are finding the situation emotionally challenging. Sources of support include patient and carer support and advocacy services, counselling and chaplaincy services, and ethics support networks.

36

You should do your best to make sure that patients who may feel pressured by family or carers to accept or refuse particular investigations or treatments are given the time, information and help they need to reach their own decisions.

21

When discussing the issues with people who do not have legal authority to make decisions on behalf of a patient who lacks capacity, you should make it clear that their role is to advise the healthcare team about the patient’s known or likely wishes, preferences, feelings, beliefs and values. You must not give them the impression they are being asked to make the decision.

Working in teams and across service boundaries

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.

75

You must make a record of the decisions made about a patient’s treatment and care, and who was consulted in relation to those decisions.

76

You must do your best to make sure that all those consulted, especially those responsible for delivering care, are informed of the decisions and are clear about the goals and the agreed care plan, unless the patient indicates that particular individuals should not be informed.

77

You should check the handover arrangements where you work, and use the available systems and arrangements for information storage and exchange, to ensure that the agreed care plan is shared within the healthcare team, with both paid and unpaid carers outside the team and with other health professionals involved in providing the patient’s care.  This is particularly important when patients move across different care settings (hospital, ambulance, care home) and during any out-of-hours period. Failure to communicate some or all relevant information can lead to inappropriate treatment being given (for example, DNACPR decisions not being known about) and failure to meet the patient’s needs (for example, their wish to remain at home not being taken into account).

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 

17

Good medical practice (2013), paragraphs 32 - 52.

18

GMC guidance on Raising and acting on concerns about patient safety (2012) provides more detailed advice.

Making sound clinical judgements

24

The starting point for reaching good decisions is careful consideration of the patient’s clinical situation, whether providing care in a community or a hospital setting. You must carry out a thorough assessment of the patient’s condition and consider the likely prognosis. It can be difficult to estimate when a patient is approaching the end of life, and you should allow for a range of possibilities when planning care.

25

You should identify treatment options based on:

  1. up-to-date clinical evidence about effectiveness, side effects and other risks
  2. relevant clinical guidelines on the treatment and management of the patient’s condition, or of patients with similar underlying risk factors, such as those issued by the National Institute for Health and Clinical Excellence (NICE) and the Scottish Intercollegiate Guidelines Network (SIGN).
26

You must also give early consideration to the patient’s palliative care needs, and take steps to manage any pain, breathlessness, agitation or other distressing physical or psychological symptoms that they may be experiencing, as well as keeping their nutrition and hydration status under review.

27

You must seek advice19 or a second opinion20 from a colleague with relevant experience (who may be from another specialty, such as palliative care, or another discipline, such as nursing) if:

  1. you and the healthcare team have limited experience of the condition
  2. you are uncertain about how to manage a patient’s symptoms effectively
  3. you are in doubt about the range of options, or the benefits, burdens and risks of a particular option for the individual patient 
  4. there is a serious difference of opinion between you and the patient, within the healthcare team, or between the team and those close to a patient who lacks capacity, about the preferred option for a patient’s treatment and care
  5. it is decided that clinically assisted nutrition or hydration should be withdrawn or not started in the circumstances set out in paragraphs 119-120 . 
119

If a patient is in the end stage of a disease or condition, but you judge that their death is not expected within hours or days, you must provide clinically assisted nutrition or hydration if it would be of overall benefit to them, taking into account the patient’s beliefs and values, any previous request for nutrition or hydration by tube or drip and any other views they previously expressed about their care. The patient’s request must be given weight and, when the benefits, burdens and risks are finely balanced, will usually be the deciding factor.

120

You must assess the patient’s nutrition and hydration needs separately. If you judge that the provision of clinically assisted nutrition or hydration would not be of overall benefit to the patient, you may conclude that the treatment should not be started at that time or should be withdrawn. You should explain your view to the patient, if appropriate, and those close to them, and respond to any questions or concerns they express.

19

Advice should usually be from an experienced colleague outside the team. Advice may be obtained by telephone, if necessary, provided you have given that colleague up-to-date information about the patient’s condition.

20

A second opinion should be from a senior clinician with experience of the patient’s condition but who is not directly involved in the patient’s care. It should be based on an examination of the patient by the clinician.

Explaining the clinical issues

28

You should explore treatment options with patients (and with those close to them if appropriate) focusing on the goals of care, and explaining the likely benefits, burdens and risks. You should bear in mind that patients and those close to them may not always have a clear or realistic understanding of the diagnosis or the benefits, burdens and risks of a treatment option. This is particularly the case for treatments such as cardiopulmonary resuscitation (CPR) and clinically assisted nutrition and hydration, as the public’s knowledge about the clinical complexities may be limited.

29

Patients and those close to them may also draw incorrect conclusions from the terminology used by healthcare staff about the risks or expected outcomes of these treatments. You should explain the treatment options in a way that they can understand, explaining any medical or other technical terminology that you use.

30

You should be open about any underlying uncertainties, as this helps to build trust and reduce the scope for later conflict. You can find detailed advice on how to communicate clearly and effectively with patients and those close to them, especially when explaining the side effects or other risks associated with treatments, Consent: patients and doctors making decisions together (paragraphs 7 - 12, paragraphs 18 - 25 and paragraphs 28 - 36).

7

The exchange of information between doctor and patient is central to good decision-making. How much information you share with patients will vary, depending on their individual circumstances. You should tailor your approach to discussions with patients according to:

  1. their needs, wishes and priorities
  2. their level of knowledge about, and understanding of, their condition, prognosis and the treatment options
  3. the nature of their condition
  4. the complexity of the treatment, and
  5. the nature and level of risk associated with the investigation or treatment.
8

You should not make assumptions about:

  1. the information a patient might want or need
  2. the clinical or other factors a patient might consider significant, or
  3. a patient’s level of knowledge or understanding of what is proposed.
9

You must give patients the information they want or need about:

  1. the diagnosis and prognosis
  2. any uncertainties about the diagnosis or prognosis, including options for further investigations
  3. options for treating or managing the condition, including the option not to treat
  4. the purpose of any proposed investigation or treatment and what it will involve
  5. the potential benefits, risks and burdens, and the likelihood of success, for each option; this should include information, if available, about whether the benefits or risks are affected by which organisation or doctor is chosen to provide care
  6. whether a proposed investigation or treatment is part of a research programme or is an innovative treatment designed specifically for their benefit4 
  7. the people who will be mainly responsible for and involved in their care, what their roles are, and to what extent students may be involved
  8. their right to refuse to take part in teaching or research
  9. their right to seek a second opinion
  10. any bills they will have to pay
  11. any conflicts of interest that you, or your organisation, may have
  12. any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.
10

You should explore these matters with patients, listen to their concerns, ask for and respect their views, and encourage them to ask questions.

11

You should check whether patients have understood the information they have been given, and whether or not they would like more information before making a decision. You must make it clear that they can change their mind about a decision.

12

You must answer patients’ questions honestly and, as far as practical, answer as fully as they wish.

18

How you discuss a patient’s diagnosis, prognosis and treatment options is often as important as the information itself. You should:

  1. share information in a way that the patient can understand and, whenever possible, in a place and at a time when they are best able to understand and retain it
  2. give information that the patient may find distressing in a considerate way
  3. involve other members of the healthcare team in discussions with the patient, if appropriate6 
  4. give the patient time to reflect, before and after they make a decision, especially if the information is complex or what you are proposing involves significant risks
  5. make sure the patient knows if there is a time limit on making their decision, and who they can contact in the healthcare team if they have any questions or concerns.
19

You should give information to patients in a balanced way. If you recommend a particular treatment or course of action, you should explain your reasons for doing so. But you must not put pressure on a patient to accept your advice.

20

You may need to support your discussions with patients by using written material, or visual or other aids. If you do, you must make sure the material is accurate and up to date.

21

You should check whether the patient needs any additional support to understand information, to communicate their wishes, or to make a decision. You should bear in mind that some barriers to understanding and communication may not be obvious; for example, a patient may have unspoken anxieties, or may be affected by pain or other underlying problems. You must make sure, wherever practical, that arrangements are made to give the patient any necessary support. This might include, for example: using an advocate or interpreter; asking those close to the patient about the patient’s communication needs; or giving the patient a written or audio record of the discussion and any decisions that were made.

22

You should accommodate a patient’s wishes if they want another person, such as a relative, partner, friend, carer or advocate, to be involved in discussions or to help them make decisions. In these circumstances, you should follow the guidance in paragraphs 7 - 21.

23

It is sometimes difficult, because of pressures on your time or the limited resources available, to give patients as much information or support in making decisions as you, or they, would like. To help in this, you should consider the role that other members of the healthcare team might play, and what other sources of information and support are available. These may be, for example, patient information leaflets, advocacy services, expert patient programmes, or support groups for people with specific conditions.

24

You should do your best to make sure that patients with additional needs, such as those with disabilities, have the time and support they need to make a decision. In all cases, you must treat patients fairly and not discriminate against them.

25

If you think that limits on your ability to give patients the time or information they need is seriously compromising their ability to make an informed decision, you should raise your concerns with your employing or contracting authority. See paragraph 25b of Good medical practice and the explanatory guidance Raising and acting on concerns about patient safety.7 

28

Clear, accurate information about the risks of any proposed investigation or treatment, presented in a way patients can understand, can help them make informed decisions. The amount of information about risk that you should share with patients will depend on the individual patient and what they want or need to know. Your discussions with patients should focus on their individual situation and the risk to them.

29

In order to have effective discussions with patients about risk, you must identify the adverse outcomes that may result from the proposed options. This includes the potential outcome of taking no action. Risks can take a number of forms, but will usually be:

  1. side effects
  2. complications
  3. failure of an intervention to achieve the desired aim.

Risks can vary from common but minor side effects, to rare but serious adverse outcomes possibly resulting in permanent disability or death.

30

In assessing the risk to an individual patient, you must consider the nature of the patient’s condition, their general health and other circumstances. These are variable factors that may affect the likelihood of adverse outcomes occurring.

31

You should do your best to understand the patient’s views and preferences about any proposed investigation or treatment, and the adverse outcomes they are most concerned about. You must not make assumptions about a patient’s understanding of risk or the importance they attach to different outcomes. You should discuss these issues with your patient.8 

32

You must tell patients if an investigation or treatment might result in a serious adverse outcome,9 even if the likelihood is very small. You should also tell patients about less serious side effects or complications if they occur frequently, and explain what the patient should do if they experience any of them.

33

You must give information about risk in a balanced way. You should avoid bias, and you should explain the expected benefits as well as the potential burdens and risks of any proposed investigation or treatment.

34

You must use clear, simple and consistent language when discussing risks with patients. You should be aware that patients may understand information about risk differently from you. You should check that the patient understands the terms that you use, particularly when describing the seriousness, frequency and likelihood of an adverse outcome. You should use simple and accurate written information or visual or other aids to explain risk, if they will help the patient to understand.

35

If a patient does not want to know about the possible risks of a proposed investigation or treatment, you must follow the guidance in paragraphs 13 - 17.

36

You must keep up to date with developments in your area of practice, which may affect your knowledge and understanding of the risks associated with the investigations or treatments that you provide.

Addressing uncertainty

31

If there is a reasonable degree of uncertainty about whether a particular treatment will provide overall benefit for a patient who lacks capacity to make the decision, the treatment should be started in order to allow a clearer assessment to be made.

32

You must explain clearly to those close to the patient and the healthcare team that the treatment will be monitored and reviewed, and may be withdrawn at a later stage if it proves ineffective or too burdensome for the patient in relation to the benefits. You should explain the basis on which the decision will be made about whether the treatment will continue or be withdrawn.

Emotional difficulties in end of life decision making

33

Some members of the healthcare team, or people who are close to the patient, may find it more difficult to contemplate withdrawing a life-prolonging treatment than to decide not to start the treatment in the first place. This may be because of the emotional distress that can accompany a decision to withdraw life-prolonging treatment, or because they would feel responsible for the patient’s death. However, you should not allow these anxieties to override your clinical judgement and lead you either not to start treatment that may be of some benefit to the patient, or to continue treatment that is of no overall benefit.

34

You should explain to those close to the patient that, whatever decisions are made about providing particular treatments, the patient’s condition will be monitored and managed to ensure that they are comfortable and, as far as possible, free of pain and other distressing symptoms. You should also make clear that a decision to withdraw, or not to start a treatment will be reviewed in the light of changes in the clinical situation.

35

You should offer advice about any support that may be available for the patient, for those close to them and for members of the healthcare team, if they are finding the situation emotionally challenging. Sources of support include patient and carer support and advocacy services, counselling and chaplaincy services, and ethics support networks.

36

You should do your best to make sure that patients who may feel pressured by family or carers to accept or refuse particular investigations or treatments are given the time, information and help they need to reach their own decisions.

Resource constraints

37

Decisions about what treatment options can be offered may be complicated by resource constraints – such as funding restrictions on certain treatments in the NHS, or lack of availability of intensive care beds. In such circumstances, you must provide as good a standard of care as you can for the patient, while balancing sometimes competing duties towards the wider population, funding bodies and employers.21 There will often be no simple solution. Ideally, decisions about access to treatments should be made on the basis of an agreed local or national policy that takes account of the human rights implications. Decisions made on a case by-case basis, without reference to agreed policy, risk introducing elements of unfair discrimination or failure to consider properly the patient’s legal rights (see paragraphs 7 - 9 ).

7

You must give patients who are approaching the end of their life the same quality of care as all other patients. You must treat patients and those close to them with dignity, respect and compassion, especially when they are facing difficult situations and decisions about care. You must respect their privacy and right to confidentiality.

8

Some groups of patients can experience inequalities in getting access to healthcare services and in the standard of care provided. It is known that some older people, people with disabilities and people from ethnic minorities have received poor standards of care towards the end of life. This can be because of physical, communication and other barriers, and mistaken beliefs or lack of knowledge among those providing services, about the patient’s needs and interests. Equalities, capacity and human rights laws reinforce your ethical duty to treat patients fairly.

9

If you are involved in decisions about treatment and care towards the end of life, you must be aware of the Human Rights Act 1998 and its main provisions, as your decisions are likely to engage the basic rights and principles set out in the Act5 

21

Good medical practice (2013), paragraph 56.

38

If resource constraints are a factor, you must:

  1. provide the best service possible within the resources available
  2. be familiar with any local and national policies that set out agreed criteria for access to the particular treatment (such as national service frameworks and NICE and SIGN guidelines)
  3. make sure that decisions about prioritising patients are fair and based on clinical need and the patient’s capacity to benefit, and not simply on grounds of age, race, social status or other factors that may introduce discriminatory access to care
  4. be open and honest with the patient (if they have capacity), or those close to them, and the rest of the healthcare team about the decision- making process and the criteria for prioritising patients in individual cases.
39

You should not withdraw or decide not to start treatment if doing so would involve significant risk for the patient and the only justification is resource constraints. If you have good reason to think that patient safety is being compromised by inadequate resources, and it is not within your power to put the matter right, you should draw the situation to the attention of the appropriate individual or organisation, following our guidance on Raising and acting on concerns about patient safety (2012).

Assessing the overall benefit of treatment options

Weighing the benefits, burdens and risks

40

The benefits of a treatment that may prolong life, improve a patient’s condition or manage their symptoms must be weighed against the burdens and risks for that patient, before you can reach a view about its overall benefit. For example, it may be of no overall benefit to provide potentially life prolonging but burdensome treatment in the last days of a patient’s life when the focus of care is changing from active treatment to managing the patient’s symptoms and keeping them comfortable.

41

The benefits, burdens and risks associated with a treatment are not always limited to clinical considerations, and you should be careful to take account of the other factors relevant to the circumstances of each patient.

42

Patients who have capacity will reach their own view about what personal factors they wish to consider and the weight they wish to attach to these alongside the clinical considerations. (See the model for decision making in paragraph 14)

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. 
43

In the case of patients who lack capacity, their legal proxy will make these judgements with advice from you and others involved in the patient’s care. If you are responsible for making the decision about overall benefit, those close to the patient and members of the healthcare team are likely to have knowledge about the patient’s wishes, values and preferences and any other personal factors that should be taken into account. (See the model for decision making in paragraph 16.) You may also find information about the patient’s wishes in their notes, advance care plan or other record, such as an advance request for or refusal of treatment.

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.

Avoiding bias

44

Some patients, and those close to them, may not be aware of the range of services and treatments available to them, which could have a bearing on the options they would see as offering overall benefit. You should satisfy yourself that the patient has sufficient information and support so that they are not disadvantaged in accessing beneficial treatment and care.

45

It may be particularly difficult to arrive at a view about the overall benefit of a treatment if the patient has problems in communicating their wishes and preferences, or lacks capacity. In such cases you must not simply rely on your own values or on those of the people consulted about the patient. You should take all reasonable steps to maximise the patient’s ability to participate in the decision-making process. You can find detailed advice about how to approach this in Consent: patients and doctors making decisions together.

46

You must be careful not to rely on your personal views about a patient’s quality of life and to avoid making judgements based on poorly informed or unfounded assumptions about the healthcare needs of particular groups, such as older people and those with disabilities.

Resolving disagreements

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.

22

The courts will consider whether treatment is in the patient’s ‘best interests’ (England, Wales and Northern Ireland). The courts in Scotland, and the Mental Welfare Commission for Scotland’s Nominated Practitioner, will consider whether treatment is of ‘benefit’ to the patient. See the legal annex.

49

In situations in which a patient with capacity to decide requests a treatment and does not accept your view that the treatment would not be clinically appropriate, the steps suggested above for resolving disagreement may also be helpful.