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

Neonates, children and young people

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Children, including neonates, and young people are individuals with rights that must be respected. This means that, if they are able to express a view and take part in decision making, you must listen to them and take account of what they have to say about things that affect them, respecting their decisions and confidentiality. You have a duty to safeguard and protect the health and well-being of children and young people. You must also consider the role and responsibilities of parents and others close to them, but your primary duty is to the child or young person who is your patient.

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Our guidance, 0-18 years: guidance for all doctors, provides detailed advice on applying these principles when caring for children and young people. The advice below focuses on helping you to apply the principles in situations in which children or young people may be approaching the end of their life.

Considering the benefits, burdens and risks of treatment

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Decisions about treatment for children and young people must always be in their best interests.29 This means weighing the benefits, burdens and risks of treatment for the individual child. A child’s best interests are not always limited to clinical considerations and, as the treating doctor, you should be careful to take account of any other factors relevant to the circumstances of each child.

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‘Best interests’ is used here as the term is widely accepted and used across the UK in relation to decisions involving children and young people. It involves weighing the benefits, burdens and risks of treatment, as do decisions about ‘overall benefit’ in the case of adults who lack capacity to decide.

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Identifying the best interests of children or young people who may be approaching the end of life can be challenging. This is particularly the case when there are uncertainties about the long-term outcomes of treatment, when emergencies arise, and in the case of extremely premature neonates whose prospects for survival are known to be very poor. Complex and emotionally demanding decisions may have to be made; for example, about whether to resuscitate and admit a neonate to intensive care, and whether to continue invasive intensive care or replace it with palliative care. It can be very difficult to judge when the burdens and risks, including the degree of suffering caused by treatment, outweigh the benefits of the treatment to the patient.

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You must take account of up-to-date, authoritative clinical guidance when considering what treatment might be in a child or young person’s best interests. If there are uncertainties about the range of options for managing their condition, or the likely outcomes, you should seek advice or a second opinion as early as possible from a colleague with relevant expertise (who may be from another specialty, such as palliative care, or another discipline, such as nursing).

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Parents30 play an important role in assessing their child’s best interests, and you should work in partnership with them when considering decisions about their child’s treatment. You should support parents, and must share with them the information they want or need, in a way that they can understand, about their child’s condition and options for care (subject to considerations of confidentiality). You must take account of their views when identifying options that are clinically appropriate and likely to be in the child’s best interests.

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‘Parent’ means anyone holding ‘parental authority’. For details of who can hold parental authority refer to 0-18 years: guidance for all doctors.

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You must be able to explain and justify the factors that you judge should be taken into account when considering decisions about what treatment might be in the best interests of a child or young person. You must not rely on your personal values when making best interests decisions. You must be careful not to make judgements based on poorly informed or unfounded assumptions about the impact of a disability on a child or young person’s quality of life.

Making the decision

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You can provide medical treatment to a child or young person with their consent if they have capacity to make the decision, or with the consent of a parent or the court. Detailed guidance on the different decision-making authority of people with parental responsibility, family members and informal carers is provided in the GMC’s 0-18 years: guidance for all doctors.

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You can provide emergency treatment without consent to save the life of, or prevent serious deterioration in the health of, a child or young person.

Children and young people who have capacity

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You must decide whether the child or young person is able to understand the nature, purpose and possible consequences of investigations or treatments you propose, as well as the consequences of not having treatment. Only if they are able to understand, retain, use and weigh this information, and communicate their decision to others, can they consent to an investigation or treatment.

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The capacity to consent depends more on young people’s ability to understand and weigh up options than on age. When assessing a young person’s capacity to consent, you should bear in mind that:

  1. at 16 a young person can be presumed to have capacity to consent
  2. a young person under 16 may have the capacity to consent, depending on their maturity and ability to understand. 
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It is important that you assess maturity and understanding on an individual basis, and with regard to the complexity and importance of the decision to be made. You should remember that a young person who has the capacity to consent to straightforward, relatively risk-free treatment may not necessarily have the capacity to consent to complex treatment involving high risks or serious consequences. The capacity to consent can also be affected by their physical and emotional development and by changes in their health and treatment.

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You should listen to and respect children and young people’s views about their health and consider how best to support them to reach an understanding of the clinical issues, so far as they are able. You should involve them as much as possible in discussions about their care, whether or not they are able to make decisions for themselves. You should not withhold information about their diagnosis and prognosis that they are able to understand, unless they ask you to, or if you judge that giving it might cause them serious harm. In this context ‘serious harm’ means more than that the child might become upset or decide to refuse treatment.

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You should work constructively with the child or young person if possible, and with their parents or carers and other members of the healthcare team, and strive to reach a consensus on treatment options and on what course of action would be in their best interests. You should be aware of the arrangements for advocacy and mediation where you work so that you can advise the child and their parents where to get help and support in making their decision if they want or need it.

Children and young people who lack capacity

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If a child lacks capacity to consent, you should discuss with their parents the treatments you assess to be clinically appropriate, and seek their consent to the treatment they judge to be in the child’s best interests. It is usually sufficient to have consent from one parent, but if more than one person holds parental authority you should encourage them to reach a consensus. If after discussion, you and the parents reach a consensus that life-prolonging treatment would not be in the child’s best interests and the treatment is withdrawn or not started, you must make sure that any distressing symptoms are addressed and the child is kept as comfortable as possible. You must monitor the child’s condition and be prepared to reassess the benefits, burdens and risks of treatment in light of changes in their condition. You must keep the parents fully involved.

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If a young person aged 16 or 17 lacks capacity, in Scotland you can make decisions on the same basis as for an adult who lacks capacity to decide (see paragraphs 15 - 16). In England, Wales and Northern Ireland, you should follow the guidance at paragraph 104, but if a parent is not available you can make the decision about treatment and care following the guidance at paragraph 16(f).

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

a. be clear what specific decisions about treatment and care need to be made

b. check who has the responsibility to decide which option would be of overall benefit to the patient and make sure that reasonable steps are taken to find out:

  1. whether there’s evidence of the patient’s previously expressed values and preferences that may be legally binding, such as an advance refusal of treatment
  2. whether someone else has the legal authority to make the decision on the patient’s behalf or has been appointed to represent them. You should bear in mind that the powers held by a legal proxy9 may not cover all types of treatment, so you should check the scope of their decision-making authority10  

c. If there is no evidence of a legally binding advance refusal of treatment, and no one has legal authority to make this decision for the patient, then, if you have lead responsibility for the patient’s treatment and care, you are responsible for deciding what would be of overall benefit to them11 . 

In doing this, if you must:

  1. consult with those close to the patient and other members of the healthcare team, take account of their views about what the patient would want, and aim to reach agreement with them
  2. consider which option aligns most closely with the patient’s needs, preferences, values and priorities
  3. consider which option would be the least restrictive of the patient’s future options
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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 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. The doctor 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, the doctor must make a judgement about its validity and its applicability to the current circumstances. If the doctor concludes 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, the doctor explains the relevant 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 treatment or care that the doctor doesn’t think would be of overall benefit to the patient, the doctor 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 doctors 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 the doctor still considers that the treatment or care would not serve the patient’s needs, then they should not provide it. But, they should explain their 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.
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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 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. The doctor 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, the doctor must make a judgement about its validity and its applicability to the current circumstances. If the doctor concludes 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, the doctor explains the relevant 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 treatment or care that the doctor doesn’t think would be of overall benefit to the patient, the doctor 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 doctors 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 the doctor still considers that the treatment or care would not serve the patient’s needs, then they should not provide it. But, they should explain their 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.

Neonates and infants

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It may be particularly difficult to make a decision on the basis of what is in the best interests of a neonate or infant. If, when considering the benefits, burdens and risks of treatment (including resuscitation and clinically assisted nutrition and hydration) you conclude that, although providing treatment would be likely to prolong life, it would cause pain, or other burdens that would outweigh any benefits and you reach a consensus with the child’s parents and healthcare team that it would be in the child’s best interests to withdraw, or not start the treatment, you may do so. However, in the case of decisions about clinically assisted nutrition and hydration, before you reach a definite decision to withdraw or not to start treatment, you must seek a second opinion (or, if this is not possible, advice) following the guidance at paragraph 121. Whatever decision is made, you must make sure that any distressing symptoms that the child may be experiencing are managed effectively and that the child’s condition is reviewed regularly.

121

In these circumstances you must make sure that the patient’s interests have been thoroughly considered. This means you must take all reasonable steps to get a second opinion from a senior clinician (who might be from another discipline) who has experience of the patient’s condition but who is not already directly involved in the patient’s care. This opinion should be based on an examination of the patient by the clinician. In exceptional circumstances, if this is not possible for practical reasons, you must still get advice from a colleague, for example by telephone, having given them up-to-date information about the patient’s condition. You should also consider seeking legal advice.35 

Parents' concerns and anxieties

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You should be sensitive to the concerns and anxieties that parents may have when decisions have to be made about withdrawing or not starting potentially life-prolonging treatment. For example, parents may feel responsible for any adverse outcomes and want reassurance that all appropriate treatment for their child is being offered. You must listen to their concerns, consider carefully their views about changes in their child’s condition, and make sure they have access to information or support if they need or want it. You should try to make sure that they receive consistent, clear messages about their child’s care or condition from different members of the healthcare team.

Resolving disagreements

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If disagreements arise about what course of action would be in a child or young person’s best interests, it is usually possible to resolve them by, for example, involving an independent advocate; seeking advice from a more experienced colleague; obtaining a second opinion; by holding a case conference or ethics consultation; or by using local mediation services. If, after taking such steps, significant disagreement remains, you should seek legal advice on applying to the appropriate court for an independent ruling. Approaching the court should be seen as a constructive way of thoroughly exploring the issues and providing reassurance for the child and parents that the child’s interests have been properly considered in the decision.