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 be particularly vulnerable or susceptible to pressure at this time are supported to reach their own decisions. If you’re concerned that a patient can’t make a decision freely, you can find detailed advice on how to manage this at paragraphs 69-75 of Decision making and consent.

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 (2024), paragraphs 16, 19, 21,23,28,32,34,35,37,38,48-51,53,61-63,65,66,74.

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, clinically assisted nutrition or hydration must be provided 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 have lead responsibility for their treatment and care and 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, Decision making and consent (paragraphs 10-13, paragraphs 16-30, paragraph 41 and paragraphs 66-67)).

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 be particularly vulnerable or susceptible to pressure at this time are supported to reach their own decisions. If you’re concerned that a patient can’t make a decision freely, you can find detailed advice on how to manage this at paragraphs 69-75 of Decision making and consent.

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 poorer 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 (2024), paragraph 20.

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).

Considering the benefits, burdens and risks of treatment and avoiding bias

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 whether it could be in their interests. For example, it may not be in a patient’s interests to provide potentially life prolonging but burdensome treatment in the last days of their 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. You and the patient make an assessment of the patient’s condition, taking into account their medical history, views, experience and knowledge. 
  2. You uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which options for investigating, treating or managing the patient’s condition (including the option to take no action) are clinically appropriate. You explain the options to the patient, setting out the potential benefits, burdens and risks of each option. You may recommend a particular option which you believe to be best for the patient, but you must not put pressure on the patient to accept your 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 between the options. They also have the right to accept or refuse an option for a reason that may seem irrational to you or for no reason at all.
  4. If the patient asks for treatment or care that you don’t think would be clinically appropriate, you should explore their reasons for requesting it, their understanding of what it would involve, and their expectations about the likely outcome. This discussion will help you take account of factors that are significant to the patient and assess whether providing the treatment or care could serve the patient’s needs. If after discussion you still consider that the treatment or care would not serve the patient’s needs, then should not provide it. But, you should explain your reasons to the patient and explore other options that might be available, including their right to seek a second opinion. 
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 and you have lead responsibility for the patient’s treatment and care:

  1. You, with the patient (if they are able to contribute) and those who care for the patient12 , makes an assessment of the patient’s condition taking into account the patient’s medical history and the patient and carer’s (or carers’) knowledge and experience of the condition. 
  2. You uses specialist knowledge, experience and clinical judgement, together with any evidence about the patient’s views (including any advance statement and/ or advance care plan), to identify which investigations, treatments or options for managing the patient’s condition (including the option to take no action) are in the patient’s clinical interests and to decide which of those options is likely to result in their overall benefit.
  3. If the patient has made an advance refusal of treatment, you must make a judgement about its validity and its applicability to the current circumstances. If  you conclude that the advance refusal is legally binding, it must be followed in relation to that treatment. Otherwise it should be taken into account as information about the patient’s previous wishes. (See paragraphs 67 - 74 on assessing the legal status of advance refusals.)
  4. If an attorney or other legal proxy has been appointed to make healthcare decisions for the patient, you explain the relevant options to the legal proxy (as you would do for a patient with capacity), setting out the benefits, burdens and risks of each option. You may recommend a particular option which you 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.  You 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, you 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, you 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 you are responsible for making the decision, you 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, you will explain the issues; seek information about the patient’s circumstances; and seek views about the patient’s wishes, preferences, feelings, beliefs and values. You 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. You 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 , you must approach your 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, you 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 treatment or care that you don't think would be of overall benefit to the patient, you should explore their reasons for requesting it, their understanding of what it would involve, and their expectations about the likely outcome. This discussion will help you take account of factors that are significant to the patient and assess whether providing the treatment or care could serve the patient’s needs. If after discussion you still consider that the treatment or care would not serve the patient’s needs, then you should not provide it. But, you should explain your reasons to the proxy or other person involved in the decision making and explore other options that might be available, including their right to seek a second opinion, applying to the appropriate statutory body for a review (Scotland), and applying to the appropriate court for an independent ruling. For further guidance on acting on advance requests for treatment see paragraphs 63 - 66.

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 being in their interests. 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 Decision making and consent.

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

If you have lead responsibility for the patient’s treatment and care, 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 disagreement about a significant decision, you must follow any formal steps to resolve the disagreement that are required by law or set out in the relevant code of practice. You should make sure you are aware of the different people you must consult, their different decision-making roles and the weight you must attach to their views. You should consider seeking legal advice and may need to apply to an appropriate court or statutory body for review or for an independent ruling. Your patient, those close to them and anyone appointed to act for them should be informed as early as possible of any decision to start legal proceedings, so they have the opportunity to participate or be represented.

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.