Working with the principles and decision-making models 

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.

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.

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.

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.)

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.

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.

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 

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.

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).

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.

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 . 

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.

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.

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)).

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.

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.

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.

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.

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.

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.

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 ).

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.

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).

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.

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.

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.