2.3.1 Statutes

A. The Children Act (England and Wales—1989 and 2004; Scotland—1995)21

The Children Act provides an overall statutory framework for delivery of children's services, and the rights and responsibilities of parents. It makes no specific provisions for withholding or withdrawing treatment but enunciates important principles that underpin practice, the most relevant of which are:

• A child's welfare is of paramount consideration when making decisions about the child.

• Particular regard should be paid to the ascertainable wishes and feelings of the child and any harm which the child has suffered or is at risk of suffering.

• Parental rights and duties must be exercised in the child's best interests.

B. The United Nations Convention on the Rights of the Child22 and the Human Rights Act 199823

The United Nations Convention on the Rights of the Child (UNCRC) applies to all children and young people under the age of 18 and was ratified by the UK in 1991. Whilst it cannot be directly applied in UK courts, ratification means that the UK government is bound to honour it and to make all laws, policy and practice applying to children compatible with it.

The Human Rights Act (HRA) 1998 incorporates and gives effect in the UK to the rights and freedoms guaranteed under the European Convention on Human Rights (ECHR). The most relevant convention rights with respect to decisions to limit LST in children are:

•  Article 2: the right to life and the positive duty to protect it Article 3: the prohibition of inhuman and degrading treatment Article 5: the right to liberty and security of the person

•  Article 8: the right to respect for private and family life

•  Article 9: the right to freedom of thought, conscience and religion

•  Article 14: the prohibition of discrimination in respect of enjoyment of the other rights

Although there is a positive obligation to protect life, in certain cases treatment can be withheld or withdrawn, where it is in a child's best interests to do so, even if this will result in the child's death. When tasked with intervening in disputes which have arisen over the withholding or withdrawing of treatment, judges seek to balance the duty to respect and protect life (Article 8) against the duty not to inflict inhuman and degrading treatment (Article 3), whilst attempting to respect the provisions of Articles 8 and 9.

C. The Mental Capacity Act 2005 and the Adults with Incapacity (Scotland) Act 200024

These Acts provide the legal framework for acting and making decisions on behalf of individuals aged 16 and 17 (‘young persons’), who lack the mental capacity to consent to treatment and/or make particular decisions for themselves.

Decisions must be made in the best interests of the young person who is assessed as lacking capacity to consent by the healthcare professional responsible for the young person's care in accordance with criteria set out in the Acts.

Young persons will lack capacity to consent if they are unable to (a) understand the information relevant to the decision, (b) retain that information, (c) weigh that information as part of the decision-making process and (d) communicate the decision reached (whether by talking, using sign language or any other means).

When assessing the young person's best interests, the healthcare professional must consult with those involved in the young person's care and anyone interested in their welfare—if it is practical and appropriate to do so– in order to help them reach a decision on best interests. The extent to which the young person's parents are consulted will depend on the particular circumstances and healthcare professionals will need to take care not to breach the young person's right to confidentiality.

D. The Equality Act 201025

The Act brings together many separate pieces of legislation to provide a single legal framework to protect the rights of individuals and to provide equal opportunities for all regardless of age or disability. It protects people from discrimination in the work place, education and the wider society. It protects disabled people from discrimination and unfair treatment arising directly from their disability and indirect discrimination arising from the application of a rule, policy or practice that applies to all but is particularly disadvantageous to those with a particular disability, compared with those who do not have it and cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way. The Act also provides protection against victimisation or harassment.

E. Children and Families Act 201425a

The Children and Families Act is a recently enacted, wide-ranging piece of legislation intended to improve services for key groups of vulnerable children, including those with disability. An important provision is the ultimate replacement of Statements of Educational Need by person centred, co-ordinated Education, Health and Care (EHC) plans designed to meet the child's educational health and welfare needs. The general principles and matters to be considered in EHC assessments and plan formulation are similar, albeit in different clinical circumstances, to those involved in the formulation of advance care plans. The process of making decisions to limit LST will need to take due account of any relevant EHC plans.

2.3.2 The child and young adult

The Children Act 198921 requires that particular regard must be given to the ascertainable feelings and wishes of the child, in the light of the child's age and understanding, as well as any harm which the child is suffering or at risk of suffering. Under the terms of the Children Act. Health professionals and parents must always seek to involve the child in any decisions being made about them, in a way that they can understand. This is particularly relevant in cases involving LST and decisions to discontinue it.

The Mental Capacity Act 2005 and the Adults with Incapacity (Scotland) Act 2000,24 though applying to those (aged 16 and over) who lack capacity to consent, does not permit those under 18 to make advance decisions (also known as advance directives) or create a Lasting Power of Attorney (appointing another to make health and welfare decisions on their behalf).

Unless given in a genuine emergency, all medical treatment requires consent that is informed and freely obtained from a person who has capacity. Proposals to change the goals of treatment or to withhold, withdraw or limit LST also require consent.

When involved with children or young persons, the following general principles apply:

• In England and Wales, children aged 16–17 years are presumed to have capacity to consent to treatment,26 but they cannot refuse treatment that is considered to be in their best interests. Legally, a parent can consent to treatment even if a competent young person refuses treatment.

• In Scotland, children over 16 years may both consent and refuse all treatments provided they have capacity.

• Where a child (young person) of 16–17 years lacks capacity, consent can be given by a person who holds Parental Responsibility (PR).

• Children under 16 may consent to treatment (in their best interests) if they are capable of fully understanding the implications of their decision.27 The Gillick test is commonly used to ascertain whether a child (aged 16 years or younger) is able to consent to his or her own medical treatment, with or without the need for parental consent and/or knowledge. For the child to be Gillick competent, the child must have sufficient maturity and understanding to take a decision of the seriousness in question.

• A child may refuse LST where parents and clinicians agree with that refusal. However, where there is no such agreement, the child's refusal may be overridden by those with PR or by the Court if it is considered in their best interests to do so. The Children's Act and the UNCRC place emphasis on involving individual children, in accordance with their age and capacity, and giving due weight to their views in making informed determination of what is in the child's best interests.

2.3.3 Parental responsibility

A. Rights, duties and power

The meaning and scope of PR is set out in the Children Act 1989. PR refers to the rights and responsibilities parents have in respect to their children. This includes decisions relating to medical care and its withdrawal (subject to such decisions being made in the child's best interests).28 ,29 PR is one of the key principles of the Act; there are a number of ways by which one can acquire PR under the Act.

• For children whose births were registered after 15 April 2002 in Northern Ireland, from 1 December 2003 in England and Wales, and from 4 May 2006 in Scotland, PR rests with both parents, provided they are named (at the time of registration) on the birth certificate, regardless of whether they are married or not.

• A child's biological mother automatically has PR.

• In all other cases, a father does not have PR unless he was married to the mother at the time of the child's birth, or has entered into a PR agreement with her, or obtained a court order granting him PR.

It is good practice for both parents to be fully involved in decision making as far as possible, whether or not the father has PR.

Other individuals can obtain PR by court order, or by being appointed as a guardian on the death of a parent, for example, a local authority, grandparents, foster carers, etc. There has been extension in relation to PR by the Children and Families Act 201425a for fathers or second female parents named in Child Care arrangement Orders (previously referred to as residence and contact orders) and it is important therefore that you establish as is reasonably possible who has PR responsibility. If there is doubt, legal advice should be sought.

Generally the consent of one parent is sufficient to provide authority for medical treatment.30 If, however, there is disagreement between parents as to the child's or young person's best interests, an application should be made to court for a determination as to best interests.

There are rare circumstances, defined by case law, for example, ritual circumcision, for which the consent of both parents is necessary.31

Consent to the withholding or withdrawal of treatment may be given by anyone who holds PR. However, where PR is shared, if there is parental or other opposition, parental equivocation or doubt as to parental capacity or a disagreement as to what is in the child or young person's best interests, an application should be made to court for a determination as to best interests.

A parent aged 16 and above is presumed to have capacity, unless shown not to satisfy the test of capacity under the Mental Capacity Act (MCA) 2005. A parent under 16 is assessed by reference to the Gillick test (see ‘The child and young adult’). If a parent lacks capacity, the parent will not be able to give valid consent and an application will need to be made to court for treatment to be lawfully given.

B. The interface between parental interests and wishes and professional duties

The extent to which a parent's wishes are determinative have been considered and set out in common law in a way which is compatible with the ECHR. A number of basic principles can be derived from these cases:

• It is essential to involve parents in decision making.32

• Where intractable or irreconcilable differences of opinion arise between parents and healthcare professionals, the court's intervention should be sought for a determination on whether the proposed treatment, or withholding or withdrawal of treatment, is in the child's best interests.32

• Whilst the court will have regard to the views of parents, the extent to which these will be determinative will depend on the court's assessment of that view. The court is the final arbiter in such circumstances and it may overrule the decision of a parent.

C. When parental and professional interests are in conflict (see ‘Practical aspects of decision making’ and ‘Bereavement’ for practical details of management)

Most decisions relating to healthcare, including those pertaining to the limitation or withdrawal of treatment, are reached in consensus with the family and, where appropriate, the child. Infrequently there may be disagreement either within the treating team or with the child and/or child's family over a child's best interests. Such disagreement may be borne of miscommunication or differences in genuine and deeply held beliefs.

Good practice requires ongoing discussion between relevant parties to resolve disagreements. Clarification of the facts, by obtaining second medical opinions or clarification and analysis of the ethical issues involved by clinical ethics services and others, may be helpful, as may the use of mediation techniques. Wherever possible these should be used before referral to court is made. If a matter is referred to court, the court will wish to know what attempts have been made—and by whom—to resolve conflicts.

2.3.4 The role of the courts in end-of-life decision making

If agreement cannot be reached between parents, or those with PR, and healthcare professionals, legal advice should be sought from specialist healthcare lawyers. Taking legal advice, of itself, does not necessarily mean that court proceedings will follow.

The court has inherent jurisdiction to grant a Declaration making it lawful for healthcare professionals to withhold or withdraw LST notwithstanding the absence of parental consent if this is deemed to be in a child's best interests.33

The court must exercise independent and objective judgment on the basis of all the evidence and consideration will be given to, amongst other factors:

• The likely quality of future life for the child with and without treatment.34–36

• The intolerability of treatment or outcome.

• The relevant clinical considerations.37 ,38

• The pain or suffering caused by the treatment.

• The pleasure a child may derive from its current life including the child's awareness. The court will conduct a balancing exercise in which all relevant factors are weighed. The court will assess the benefits and burdens of giving or not giving potential treatments and of maintaining or withdrawing certain forms of treatment in order to assess best interests.39–41

The court's approach in end-of-life decisions

In reaching decisions about withdrawing or withholding LST, the court adopts a strong presumption in favour of preserving life. The court will balance a number of legal principles, for example, the sanctity of life, the prohibition against inhuman and degrading treatment, the freedom of thought, conscience and religion and the right to family life. Case law has established that:

• The principle of the sanctity of life is not absolute. Whilst Article 2 of the European Convention of Human Rights imposes a positive obligation to give LST, it does not impose an absolute obligation to provide such treatment if it would be futile and where responsible medical opinion is of the view that such treatment is not in the best interests of the patient.33 ,42 ,43

• The right to life is not the same as the right to be kept alive.44

• There is no obligation to give treatment that is futile or burdensome.34

• When individuals ask for treatment which the healthcare professional has not offered and which s/he considers not clinically appropriate for the patient, the professional is not obliged to provide it. Second opinions should be arranged and/or care transferred to another healthcare professional wherever possible.43 ,45

• Responsibility for deciding which treatments are clinically appropriate rests with the healthcare professional, who must act in accordance with a responsible body of professional opinion.46

• LST can lawfully be withheld or withdrawn for a patient who lacks capacity in circumstances where commencing or continuing such treatment is deemed not to be in their best interests.47

2.3.5 Best interests

‘Best interests’ are not purely confined to considerations of best medical or clinical interests, but include other medical, social, emotional and welfare factors. The court is not tied to the clinical assessment of what is in the patient's best interests and it will reach its own conclusion on the basis of careful consideration of the evidence before it, ensuring that the welfare of the child is of paramount consideration.

The court will weigh up the overall advantages and disadvantages of limiting LST, and undertake a balancing exercise to determine what the child's best interests are. In cases involving the withdrawal of treatment, the court will need to conclude ‘to a high degree of probability’ that it is in the best interests of the child for treatment to be withdrawn.

2.3.6 Quality of life and legal decisions

Courts have recognised that quality of life determinations should be based on the individual circumstances of the person taking account of his or her perceptions without discrimination; quality of life that could be considered intolerable to one who is able- bodied may not be intolerable to one who is born with disability or has developed long- term disability.

2.3.7 Withdrawing treatment

The courts will sanction the withdrawal of treatment in cases where continued treatment would be futile even though there is a presumption in favour of preserving life.33

2.4.1 Fundamental considerations

The ELAC-RCPCH believes that there are three sources of ethical obligation that influence decisions about the provision of LST in children:

1. The duty of care that both healthcare professionals and parents owe to the child; in most situations these duties are fulfilled in partnership.

2. The need to respect the internationally agreed rights of the child which entail positive duties and negative constraints on actions relating to all children.

3. The requirements of UK law (see ‘The legal framework ’).

All the above considerations overlap to some extent but all have as their focus the best interests of the child and how and by whom these may be defined.

2.4.2 The interests of the child

Adults are usually presumed to have the ability to determine for themselves what their own (best) interests are. Healthcare professionals should respect the choices of competent adults, whether they agree with them or not. A child's capacity to decide what their best interests are may be unknown or not developed (for example, in the case of very young children). Over time children become able to express their wishes, develop their own sets of values and gain in their ability to use information to make decisions.

Current best practice guidance actively encourages children's participation in decision making (see ‘Involving children’).3 If children lack capacity to make informed choices others have legal authority to do so on their behalf, provided that they act in the child's best interests.

All decisions about best interests of a child involve value judgements about what is of value in life, how best to promote the child's interests, and how different or competing interests should be weighed against each other. Different healthcare professionals and different parents may reach different answers about what would be in the best interests of the child because they have a different understanding about the relevant facts. But they may also disagree because they have different values.

2.4.3 Parental discretion, responsibilities, rights, duties and power

In the UK, as in other cultures and legal systems, parents have discretion for a wide range of decisions concerning their child, for example, education, housing, basic healthcare. Parental decisions are generally respected in law, unless they appear to risk substantial harm to the child or are not in the child's best interests.

A family's concept of their child's best interests is likely to be determined by their own system of values. A number of influences shape a family's collective value systems; these include religious beliefs, political and cultural attitudes and life experiences. Parental values may not coincide with those of professionals. Disagreements may be aggravated by the power imbalance inherent in the healthcare professional/patient, child/parent relationship. A child's desire to make his or her own decisions may run counter to professional or parental choices. Good clinical practice at the end of life entails some way of resolving potential conflicts over what constitutes a child's best interests and who decides them (see ‘Practical aspects of decision making’).

Parental decision-making should be properly informed by providing the best information available and by presenting it in a form and at a pace they can comprehend. Parents whose understanding is limited by cognitive or communication difficulties should receive appropriate services to ameliorate or overcome these difficulties. An advocate, for example, from the Patient Advice and Liaison Service (PALS),48 may help in assisting parents and child in presenting their views and wishes to the clinical team.

The central role that parents are granted in making decisions about a child's medical treatment does not mean that they will always make those decisions themselves. They may be unable or unwilling to make decisions or prefer that healthcare professionals decide on their behalf. However, the presumption should be that parents will always want to take part in discussion about limiting LST and that they should always be invited to do so. A shared model of decision making is appropriate in most circumstances.49 ,50 Where parents do express views and these are reasonable, their values should carry great weight in decision making.

2.4.4 Parental interests, wishes and professional duties

In the context of life-limiting illness it is often possible for healthcare teams, parents and children to reach agreement as to whether LST should be provided, withheld or withdrawn. In these the situations the interests of the child and family are likely to coincide.

There are two sets of circumstances when there may be actual or apparent conflict between the interests of the child and his/her parents:

1. The parents may wish for limitation of treatments that healthcare teams regard as being in the child's best interests. This situation is rare, but if it arises the parents’ understanding of the relevant facts and the reason for their judgment should be explored. If the benefits of continuing treatment are sufficiently small or uncertain, the parents’ views about the best interests of the child should be given serious consideration. Where the benefit to the child is clear, the presumption should be to provide treatment to the child. An independent ethical review may be helpful, but it may be necessary to refer the case to the court for an independent judgment to resolve matters.

2. The healthcare team may believe that limitation of LST is in the child's best interests, but the parents do not agree and want treatment to continue. This is the more common situation. Parental wishes and interests are important but not necessarily determinative; parents’ wishes may be persuasive if the burdens to the child of further treatments are sufficiently small or uncertain.

Parental interests may overlap with the interests of the child and are difficult to separate. An approach that considers family welfare rather than purely best interests of an individual child is a model that is used by the majority of paediatricians.51 ,52

Nevertheless, the interests of the child should remain the primary guiding factor in treatment decisions. Referral to social care and legal intervention should be considered when there is justifiable concern that parental decisions would pose a significant risk of serious harm to the child.

2.4.5 Involving children

Although an assessment as to whether a child has legal capacity to make a decision about treatment is of the binary ‘yes/no’ type, appropriate involvement of children is practically important and ethically justifiable, irrespective of whether they have full capacity to make decisions for themselves. It is consistent with a rights respecting, non- discriminatory approach.

Children's capacity to make decisions evolves over time and at different rates that broadly accord with their cognitive ability, developmental level and experience. Thus children who have had extensive experience of disease and its treatment, for example, repeated cycles of chemotherapy, organ transplantation, will have more informed views about continuing treatment than an adult facing such treatment for the first time. Equally, young children may have no experience of decision making and their value systems remain unformed.

There are many ways of engaging children and involving them in decision making. These include (a) talking with them, (b) listening to them and responding to their concerns, (c) using appropriate techniques, for example, play to increase understanding and (d) acting in a way that demonstrates that account of their views has been taken.

The ELAC-RCPCH believes that there should be a presumption that children will be involved in decisions about treatment (including those concerned with limitation of LST) wherever possible and at a level that reflects their ability, understanding and experience. Healthcare professionals should enhance a child's understanding and capacity by appropriate techniques.

Some children may have no views about proposed care (for example, because of immaturity, or when illness, injury or disability limit their understanding). Others may prefer that healthcare professionals or parents decide for them, although this apparent preference should be checked and not assumed.

In the case of children who have extensive experience of illness and medical treatment it will often be reasonable to presume a greater degree of competence in decision making, but assessment of competence should nonetheless be undertaken.53

2.4.6 Children with disabilities

One of the most challenging and difficult areas involves the question of limiting LST for infants and children with severe disabilities.15

According to the World Health Organization, ‘disabilities’ is an umbrella term that covers impairments, activity limitations and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action, while a participation restriction is a problem experienced by an individual in involvement in life situations.54

In UK Law a person with disability is defined as someone who has a physical or mental impairment that has a substantial and long term adverse effect on their ability to carry out normal day to day activities.25 The Equality Act protects people with disabilities from unfair direct and indirect discrimination and from victimisation and harassment.

Disability is a complex phenomenon, reflecting an interaction between features of a person's body and the society in which he or she lives. Disabilities may vary qualitatively (they may affect movement, cognition or sensory functions), or quantitatively, depending on their degree; there are different contributors to disability. Integration of the medical and social models of disability has been an important consideration in meeting the needs of disabled children and their families. The impact of a disability on a child's life is determined by the nature of their underlying impairment and by the resources available to support them. Although healthcare professionals may focus on the medical elements of disability (the medical model), the availability—or otherwise—of social supports for an individual and their family may be of equal or greater importance in determining how much they are able to enjoy and participate in life. Individuals with disabilities can enjoy lives of high quality, and take part in a wide range of activities. It is important that the value individuals with disabilities and their families place on their lives are recognised by healthcare professionals, especially in acute medical situations where children and families are far removed from their normal environments and unable to function at their usual level.

Healthcare professionals should, whatever the clinical circumstances, ensure that the language that they use to describe or discuss disabilities is neutral, accurate and appropriate. They should avoid preconceived notions of what disabled children look, sound or behave like and avoid following negative stereotypes of the lives of those with disabilities. They should not unwittingly contribute to avoidable raised premature death rates associated with disability.

Quality of life and disability

The relevant factors in assessing quality of life for children with disability in relation to decisions about LST do not differ from those applied to those without disability; they should include: the nature of future life for that individual, the value that they will derive from it and the relative balance of positives and negatives for them. It is not a comparative judgement about the quality of life of different individuals, nor is it a determination that some individuals are of higher value or worth than others. However, as with non-disabled children there should be due consideration of the impact of treatments on the child's ability to communicate, experience awareness of those around them, experience pleasure, attain goals and be independent, and the negative impact of treatment in terms of pain, discomfort and distress.

If a child is predicted to have an impairment in their quality of life as a result of treatment, a primary consideration is whether and how their experience of life may be improved. The provision of appropriate supports can make a significant difference to the experience and quality of life of children and adults with impairment. There is an ethical and legal obligation to provide high-quality care to those with impairment, so as to maximise their quality of life, insofar as this is possible.

The ELAC-RCPCH strongly believes that the provision of care to those with disability should not be reduced and there must always be a commitment to the provision of high- quality care for them55 and that decisions to limit LST in children with disabilities should be made on the same basis as in non-disabled children.

2.4.7 Transition to adult services

Increasingly children with life-limiting illnesses will live beyond their 16th or 18th birthdays. Arrangements for transition should accord with best practice, subject to audit and respectful—insofar as possible—of the wishes, preferences, beliefs and values of those concerned. Arrangements should accord with professional guidance and be subject to age-appropriate and/or age-determined legislation, for example, Mental Capacity Act,24 Equality Act.25 Limitation of treatment decisions or arrangements for end of life should be in accordance with age-related ethical, legal and professional guidance and statute law insofar as they differ for this age group (see for example, GMC ‘Treatment and care towards the end of life: good practice in decision making’,2 Good medical practice).3

2.4.8 Axioms on which to base best practice

From these fundamental ethical and legal considerations flow a number of general axioms, which may govern practice. These are:

A. In relation to decision making

1. Optimal ethical decision making requires: open and timely communication between members of the healthcare team and the child and family; respecting the values and beliefs of those involved; and the application of fundamental ethical principles, including respect for human rights.

2. Decisions between treatment options, including those of limitation, withholding or withdrawing treatment, should be freely made by those with the capacity or legal authority to do so, on the basis of sufficient information. In circumstances where it is not possible or feasible to undertake this process, clinically appropriate treatment should be provided unless there are sufficient grounds to believe that it will be unsuccessful or will produce significant burdens for the child.

3. Resolution of disagreement should normally be achieved by discussion, consultation and consensus.

4. Parents have ethical and legal authority to decide on behalf of children who are unable, for whatever reason, to express preferences, unless they are clearly acting against the child's best interests. If they are unable, unwilling or persistently unavailable to make decisions on behalf of their child, the court's intervention should be sought.

5. The wishes of a child who has obtained sufficient understanding, maturity and experience in the evaluation of treatment options should be given substantial consideration in the decision-making process.

6. The antecedent wishes and preferences of the child, if known, should also carry considerable weight, provided that conditions at the time for action match those envisaged in advance.

7. Legal intervention should be considered when disputes between the healthcare team, child, parents and carers cannot be resolved by appropriate attempts to achieve consensus, for example, clinical ethics consultation, use of advocacy and liaison services, intercession by religious leaders and mediation.

B. In relation to circumstances in which treatment might be withheld or withdrawn

1. There is no significant ethical difference between withholding, limiting or withdrawing (stopping) treatments, given the same ethical objective.

2. The professional duty to preserve life is not an absolute one that applies at all costs. Treatments should only be provided where they are in the child's best interests.

3. It is ethical to withhold or withdraw LST if:

   1. such treatment would be medically inappropriate and could not achieve its intended purpose of preserving life or restoring health

   2. treatment would no longer be in the best interests of the child in that its burdens outweigh the benefits

   3. a competent child refuses to consent to the starting of treatment or requests that it be discontinued

4. A redirection of management from LST to palliation represents a change in aims and objectives of treatment and does not constitute a withdrawal of care. Although medical treatment that has no overall benefit may be ethically withdrawn, appropriate and effective palliative care should continue to be provided.

5. It is ethically appropriate to withhold or withdraw LST (subject to the above conditions) and to provide appropriate palliative treatments (including analgesia and sedation), even if it is reasonably foreseeable that the latter may hasten death. These steps are a desirable and acceptable part of contemporary end-of-life care and do not constitute euthanasia.

6. It is not permissible for healthcare professionals to take active steps that are intended to end the life of a child.

3.1.1 To withhold, to withdraw or to limit?

Withholding, withdrawing and limiting life-sustaining treatments are regarded as being ethically equivalent. Ethical analysis and professional guidance, published since the original RCPCH framework document, have supported this view.2 ,18

In the UK withholding and withdrawing treatment are also regarded as legally equivalent.46

The major legal consideration in decision making is whether or not the proposed or actual treatment would be in the best interests of the patient, whether adult or child.

This means practically that it is permissible to withdraw a treatment a patient is receiving if it would have been permissible to withhold the same treatment (if it were not already being given) and vice versa.

Surveys of medical and nursing staff in the UK and internationally, suggest that only a minority (21–54%) believe in the ethical and legal equivalence of withdrawing and withholding treatment. Many prefer to withhold rather than withdraw LST, and regard a decision not to start treatment as an omission to act and morally preferable to an action to withdraw.

However, even if healthcare professionals find withdrawing treatment more psychologically and emotionally challenging than withholding treatment, this should not influence treatment decisions or their practical implementation.

3.1.2 Dealing with uncertainty

It is rarely possible to have complete certainty about outcome when making any clinical decision, nor is this normally regarded as necessary. However, the gravity of the consequences of decisions to limit LST will usually demand a relatively high degree of confidence regarding outcomes.

In acute situations it is usually necessary to give LST first and to review the decision to continue when enough information is available, taking into account more experienced clinical opinion, the evolution of the clinical state, or the results of investigations. Neonates should almost always be resuscitated in the labour ward, unless there is a clear decision to do otherwise made with the consent of parents and based on appropriate guidelines.15 ,56

Such situations are most likely to arise in the care of neonates, including those below the limits of viability, those in whom there is the presence of severe life-limiting conditions and/or congenital anomalies and those with poor response to resuscitation.

In less acute situations it may still be possible to attain higher levels of certainty by continuing to provide LST whilst waiting for more information to be assembled. This should be balanced against the impact to the child of ongoing treatment and the suffering that might ensue. Decisions should not generally be rushed but there may be some circumstances in which urgent decisions are necessary so as to avoid a child's suffering being prolonged.

In critical care areas, for example, emergency departments, labour wards and intensive care units, there should be frequent review of all decisions including those related to the provision of LST. There should be a willingness to respond to changing clinical circumstances.

Treatment should be based on the most up-to-date clinical evidence and/or appropriate guidelines insofar as these exist. If there is a need to obtain more information to guide decision making, this should be clearly explained to the parents and child if competent. A realistic time frame for assembling information should be given.

The need for monitoring response to treatment and the means whereby this will be achieved should be explained. The basis for considering whether treatment should be continued or withdrawn should be made clear, for example, if treatment proves too burdensome or does not achieve its intended benefits.

3.1.3 Situations in which it is appropriate to limit treatment

The underlying ethical justification for all decisions to withhold or withdraw LST is that such treatment is not in the child's best interests. There are three sets of circumstances where it may be appropriate to consider limitation of treatment.

3.1.4 Spectrum of decisions and parental discretion

In cases where treatment limitation is considered, judgements of the balance of benefits and burdens may differ between parents and the healthcare team (see ‘Parental interests, wishes and professional duties’). For example, some parents may wish that an older child is not informed of their condition when the child themselves may have clear insight into its nature and the healthcare team believe that they should disclose it.

Benefits may be so far outweighed by burdens that it would not be ethically or morally appropriate to provide treatment even if parents request it. This applies when the child is brain dead, or where quality of life is seriously compromised by burdens of illness or treatment (see ‘Practical considerations; substantial issues in decision making’ above). In these situations treatment is judged to be medically inappropriate (sometimes also called ‘futile’), and there is no ethical (or legal) obligation to provide it.

Alternatively, benefits and burdens may be more finely balanced. Assessing whether continued treatment is in the interests of the child can be extremely difficult. There may be legitimate differences between individual families in their judgements about the benefits of treatment and of continued life. Where parents have an understanding about the likely benefits of treatment and the interests of the child, their views should be given considerable weight in the decision-making process (see ‘Parental interests, wishes and professional duties’). This means that there may be circumstances in which some children with very similar conditions and prognoses are assessed as benefiting from continued LST whilst in other cases the assessment may be to have such treatment withdrawn.

In contrast, it may be that the overall benefits of treatment are so great that the assessment is that LST should continue to be provided, even if parents disagree with that assessment. It is uncommon for parents to oppose LST in this situation, but if they continue to refuse to consent, legal action should be taken to safeguard the interests of the child until a formal determination of the child's best interests can occur.

3.2.1 Clinical responsibilities of the healthcare team

Healthcare teams have individual and collective obligations to act in the child's best interests. The healthcare team must always introduce treatments for the overall benefit of the child, and should consider withdrawing them when they are no longer of benefit. All remediable causes for the child's condition must be excluded, for example, drugs, metabolic encephalopathy.

Because outcomes at the start of treatment may be uncertain, the team should wait until enough information (not feelings) about the child's clinical condition and other relevant matters is available (see ‘Dealing with uncertainty’). This delay may become a source of tension for all. Information should be collected with the aim of providing a clear diagnosis and an indication of the likely prognosis. Ultimately, decisions to withhold or withdraw certain treatments will be based on probabilities rather than certainties. Sometimes children, in whom LST is withheld or withdrawn, may survive.58–63 In these circumstances continuing support and palliative care should be provided. In situations where treatment is withheld or withdrawn, the healthcare team needs to be flexible in the face of changing circumstances, as the primary intention of limiting treatment is not the death of the child.

3.2.2 The range of treatments that may be withdrawn

There are many different types and intensities of treatment that it may be appropriate to consider limiting, depending on the severity of the illness or the situation. These may include experimental treatments (ie, those currently not validated by research evidence), CPR, mechanical ventilation, intravenous inotropic agents, antibiotics, CANH and ECMO.

The appropriateness of continuing or withdrawing any particular treatment depends on both the indication for that treatment and on the justification for limiting LST (‘Practical considerations; substantial issues in decision making’). Where the reason for withholding or withdrawing LST is on the basis of the burdens of treatment or inevitability of demise, it may be appropriate to limit some LSTs but not others. For example, it may be appropriate to withhold invasive ventilation in a child with a severe neuromuscular disorder, but to provide other less burdensome treatments, including non-invasive respiratory support, nutritional support, antibiotics, or blood transfusions. In other situations, where the probability of recovery is very low, it may be appropriate to withhold CPR, but to provide other forms of LST, including mechanical ventilation for acute respiratory failure.

These matters, amongst other subjects relating to determination of best interests, should if possible be addressed before acute situations arise. It is particularly important to discuss these matters in the context of chronic life limiting or life shortening conditions, before acute episodes occur or they become life threatening conditions. Forward planning enables the topic of adverse outcomes to be discussed in a sensitive manner and enables the views of the child and family to be ascertained and appropriate care plans to be developed. Such a process facilitates the implementation and communication of professional guidance. Whilst the role of paediatric advance care plans in the UK awaits formal evaluation,64 any decision to limit treatment must remain consistent with the contemporary legislation of the relevant jurisdiction for example the relevant Children Act or an Education Health and Care (EHC) plan agreed under the Children and Families Act 2014.

It is important to be clear to all involved (including the child when competent and where appropriate) as to which treatments are appropriate and which are not, which will be provided, and which will not. The range of chosen interventions is increasingly defined by end-of-life care plans, acute emergency care plans or Limitation of Treatment Agreements (LOTAs) or personal resuscitation plans65 rather than Do Not Attempt CPR (DNA CPR) Orders. Because parents may change their minds over the details of care plans or treatment agreements the precise details of both need to be re-confirmed.

Where the justification for limiting treatment is because of the likelihood of imminent demise or the burdens of the child's condition or limited ability to derive benefit (see previous ‘Practical considerations; substantial issues in decision making’), it may be appropriate to withdraw or withhold all treatments except those aimed at keeping the child comfortable. The general and specific measures necessary for this can form part of limitation of treatment agreements or end-of-life care plans.

3.2.3 Cardiopulmonary resuscitation

The purpose of CPR is to attempt to restart the heart or breathing and restore circulation after a cardio-respiratory arrest. It often includes invasive procedures, for example, obtaining access to the child's airway and circulation. Its success rate is dependent on circumstance but generally lower than is commonly perceived by the general public. Both CPR, and the physiological process leading up to cardio-respiratory arrest, may have both harmful side effects and adverse consequences, for example, hypoxic brain damage and poor neurological outcomes. If it is unsuccessful it may mean that death occurs in a traumatic and undignified manner and often in the absence of parents.

A number of professional bodies in the UK have published advice for healthcare professionals on when to attempt resuscitation and when it is inappropriate to do so.66 ,67

In essence, an attempt to provide CPR is inappropriate if:

• It is unlikely to be successful in restarting the heart or breathing because of the child's underlying condition.

• There is a limitation of treatment agreement or other end-of-life care plan that excludes its use.

• Even if successful it is likely to produce more burdens than benefits.

• In practice these are the same conditions that apply to withholding or withdrawing other forms of treatment as set out in ‘Practical considerations; substantial issues in decision making’.

Guidance for parents and carers on resuscitation and its likely burdens, risks and outcomes is also available.68 ,69 Nevertheless, some parents may request that their child receives CPR despite a small chance of success or high risk of adverse outcomes. Parental understanding about CPR and outcomes and the reasons for their request should be explored; it may be possible to reach agreement on the extent to which treatment should be limited. If this is not practicable the possible options for the parents, including second opinions and legal review, should be discussed. However, clinicians cannot be compelled to provide treatment they feel not in the child's best interests.

DNA CPR decisions apply only to CPR and it does not follow that other treatments will be withheld or withdrawn. Other treatments and care should continue to be provided if it is clinically appropriate and in the child's best interests to do so. Some hospitals have moved away from such binary negative type ‘orders’ to focus on more positive aspects of care which might appropriately be provided for children in these difficult circumstances, in the form of end-of-life care plans or pathways or advanced care plans.

DNA CPR orders do not override clinical judgement or discretion. For example, they may not be followed if a child suffers a cardiac or respiratory arrest from a reversible cause, for example, acute aspiration or one not envisaged when the original order was made.

3.2.4 Clinically assisted nutrition and hydration

All children have a basic need for food and drink to maintain adequate levels of nutrition and hydration and to prevent the adverse outcomes associated with malnutrition or dehydration. This applies equally to those with life-limiting illness.17

Giving food by mouth is part of basic care and should be provided for those who can tolerate it without serious risk, for example, choking, aspiration, and who appear hungry and thirsty.70

Separate assessment of a child's fluid and nutrition needs should take place alongside assessment of their clinical condition and forms a basic part of care. It will determine whether clinically assisted provision of nutrition and hydration is required. CANH is appropriate in many children, including those with severe impairment or terminal illnesses.

CANH may be provided by naso-gastric or naso-jejunal tube or by Percutaneous Endoscopic Gastrostomy (PEG) or in some cases by the intravenous route. Hydration may be provided subcutaneously as well as by the above routes.17

CANH is legally regarded as a medical treatment and one that sustains or prolongs life.47 It may be used for symptom relief and may increase quality of life, but it also carries risks. There may be concerns that withdrawal of CANH in semiconscious or unconscious children may unwittingly increase their suffering. On the other hand, attempts to provide CANH when its intended benefits cannot be achieved may also fail to promote the interests of the child.

The role and purpose of CANH should be considered very carefully. Decisions as to whether CANH should be provided should be based on whether it provides overall benefit to the child and should be discussed fully with the family.

CANH should normally be provided for competent children who request it in order to sustain life, but its consideration will be dependent on the circumstances of the individual child. Its introduction may be entirely appropriate, for example, in a child with a swallowing disorder due to a slowly progressive neurodegenerative disease, but rarely for a child with rapidly progressive, disseminated malignant disease.

Because CANH is a LST it may be withheld or withdrawn in the same circumstances and for the same reasons as other forms of LST. It would therefore not be appropriate to provide CANH in children who face imminent demise, where its addition would prolong or increase the morbidity of the dying process, or in those circumstances where its lack of overall benefit to the child warrant an exclusively palliative approach. Although withholding or withdrawing CANH may be morally permissible, it is not obligatory. There was until recently (2014) no specific statute or case law that governs the provision of CANH in children with life-limiting illness, although there may be no legal obligation to provide it in those who are dying.34 It nonetheless seems necessary to seek formal legal advice in these circumstances.

For these reasons it may be ethically appropriate to consider withholding or withdrawing CANH in children in PVS or Minimally Conscious State. However, UK courts have indicated that for PVS cases at least an application to withdraw CANH must be made to them. Paediatricians in these circumstances should obtain legal advice as to how to proceed.

Parents should be fully involved in the decision making and should support the decision to withhold or withdrew CANH. It is important that comprehensive palliative care measures for the child, including appropriate sedation and oral hygiene, are in place.

3.2.5 Muscle relaxants and end-of-life care

Drugs that produce muscle relaxations (MRs) are widely used in adult, paediatric and neonatal intensive care to facilitate mechanical ventilation. MRs on their own do not provide sedation, anxiolysis or analgesia.

MRs have been used after withdrawal of mechanical ventilation to treat or prevent terminal gasping, a common symptom in dying patients. Terminal gasping consists of deep, irregular inspiratory efforts that are probably a physiological response to hypoxia. It is distressing for parents and staff to witness and may lead to requests that treatment is given to suppress it. However, the use of MRs in this setting is problematic; if terminal gasping is associated with distress MRs will mask the symptoms of respiratory distress without treating it. They will also lead to lack of respiratory effort and rapid death, and their use may be interpreted as an intention by medical staff to hasten death.

The ELAC-RCPCH considers that there is no justification for the prescription of MRs immediately prior to, or following, withdrawal of mechanical ventilation in order to prevent terminal gasping or to hasten death. A full explanation of the symptom of terminal gasping and its causation should be given to parents and staff together with appropriate palliative care to prevent distress and suffering.

3.2.6 Palliative care

Palliative care is intended to alleviate the harms produced by illness and disabilities and is consistent with the moral duties of medicine. Good palliative care maximises a child's potential to sustain their capabilities. It fulfils the duty to respect and promote such autonomy as the child is capable of, as well as providing support for parents and carers. Palliation aims at symptom relief irrespective and independently of any intention to provide curative or life-sustaining treatment. Parents and, where possible and appropriate, children should be given a clear explanation of the nature and purpose of palliative care, especially if there is parental scepticism about its use or reluctance to consider it. To the extent that palliative care is able to produce benefits and reduce harms, its use from early on in life-limiting illness is desirable.

Palliative care services may therefore be introduced alongside potentially curative or life- prolonging treatments, or may be the main focus of care.71 The ELAC-RCPCH believes that a re-direction of management from LST to palliation represents a change in aims and objectives of treatments and does not constitute a withdrawal of care.

There is a strong moral duty to provide palliative care to children with life-threatening and life-limiting illnesses, whether delivered by a specialist palliative care team or as part of the overall care delivered by the clinical team already caring for the child. Palliative care support may begin whenever it becomes apparent that the child's illness may result in premature death. It should entail consideration of the child's physical needs, for example, pain and symptom relief and also address the emotional, social and spiritual needs of both the child and their family. All these aspects of palliative care can be provided wherever a child and family are cared for—whether in hospital, at home or in a children's hospice. The introduction of palliative care should not be left until a decision is made to withdraw or withhold life-sustaining treatment. In making such momentous decisions, families need as much information about the palliative care support available, and their options, as they do about the role of active interventions. Without this information, they cannot make an adequately informed decision to pursue or withhold/withdraw active interventions. Therefore, it is often helpful to involve a palliative care specialist early in the course of discussions with the family.

A palliative care team, wherever based, will be able to support the family and to plan for the child's future, however short that may be. Many teams are able to offer support for continued care in a family's preferred location. This may include transferring a child out of hospital for ventilation withdrawal in a preferred place of care/place of death.

Careful planning and communication is needed to ensure continuity of care for the child and family, particularly when they are moving between hospital and home. A key worker (often the paediatric community nurse or a palliative care specialist from the local community, hospice or hospital) is essential to coordinate this, especially where it is anticipated that palliative care may be needed for an extended period of time and involve a number of healthcare professionals. A dedicated palliative care team will be able to provide bereavement support for the family before and after death. It is likely that this support can be provided in the family's own community and for however long they need. A palliative care team can support the child and family to live in the knowledge of an uncertain future. They can provide practical and emotional support for day-to-day care and support for symptom management. They will work alongside other medical and nursing teams involved in the child's care to support changing goals of care and advanced care planning.

Including palliative care support early in the course of a child's illness will ensure that, whatever the outcome, the child and family have access to appropriate care and support, wherever and whenever it is needed. Palliative care should not be reserved only for those children who are actively dying.

3.2.7 Organ donation

Organ donation should be considered in any child dying in the intensive care environment. Discussions about organ donation must be separated from discussions about withholding or withdrawing LST.72 Only after a decision has been made to withhold or withdraw LST is it appropriate to raise with the family the possibility of organ donation after death.72 ,73 This would normally be the function of the Specialist Nurse in Organ Donation.

Donation may only proceed after certification of death. In some cases certification will follow confirmation of brain stem death by formal brain stem testing using recognised protocols.57 In children who die following withdrawal or withholding of LST, death is confirmed and certified using standard cardio-respiratory criteria. If organ donation follows, it is referred to as Donation after Circulatory Death. Donated organs are removed at a standardised predetermined short interval after death so as to minimise the warm ischaemic time for the donated organs.

Discussing the possibility of organ donation with the parents of a child who is approaching death requires skill, sensitivity and tact. In the case of older children it is important to ascertain any previously expressed views. The independence of organ donation from clinical care should be established at the outset of any discussion.74 ,75

In cases where it is appropriate to do so, nationally agreed procedures and guidelines for the identification of potential donors and the notification of Specialist Nurses in Organ Donation should be followed. The appropriate legal requirements and their supporting codes of practice must be observed in discussions with the parents.76 ,77 In particular, it should be emphasised that the responsibility for deciding whether the child would be a suitable donor rests with the transplant team and not with the treating team.

3.3.1 The basis of decision making by teams

Whether or not an intervention is of benefit is a value judgement based on prediction of outcomes. Deciding what outcomes or treatments are intolerable or unbearable, or what risks are acceptable, is an intrinsic part of the decision-making process. This is not confined to clinical considerations alone and contextual factors relevant to the circumstances of the child and their family should be taken into account.

All members of the treating healthcare team need to be part of the decision-making process; their individual views should be sought and accorded due weight. The latter will depend on the knowledge, understanding and experience (both clinical and moral) that those individuals possess. Greater openness between disciplines and grades will enhance mutual understanding of individual roles and responsibilities and heighten the sense of shared moral responsibility. The fact that some members of the team may have difficulties in ‘letting go’ should be acknowledged and addressed.

Decisions should be made in partnership with the parents on the basis of shared knowledge and mutual trust and respect. The perceptions that parents and children may have of their roles and responsibilities in decision making should be acknowledged. Clinical teams need to discover the extent to which parents and children wish to assume responsibility for decision making and work within those parameters. This approach should maximise participation with which all participants feel comfortable and is likely to enable individuals to live with the decisions they make.

Ultimately, the members of the clinical team carry the shared moral responsibility for decision making, as part of their moral and legal duties as healthcare professionals. Teams can develop moral responsibility by reasoning together.

3.3.2 Obtaining second opinions

Obtaining an independent second opinion from another clinician who has experience of the child's condition may be helpful. It is essential when the team have limited experience in managing the child's condition, or there are uncertainties about specific items of symptom management, or where risks and burdens of a particular treatment are unclear. Many major medical decisions require a factual second opinion for legal reasons as well as clinical assurance, for example, termination of pregnancy, brain stem death.

Paediatricians may also seek second opinions from colleagues to enable parents and children to come to terms with diagnosis and prognosis and to provide themselves with reassurance that their assessments are appropriate.

Obtaining a second opinion as to the advisability of withholding or withdrawing LST will involve value judgements. Seeking a second opinion is not a legal requirement. It does conform to principles of good ethical decision making and the due process that good clinical governance requires. Those providing second opinions should receive clear instructions as to what is expected of them and the specific questions they need to address.

3.3.3 Resource considerations

The primary consideration in decisions about limiting LST is whether or not treatment is in the child's overall best interests. However, decisions about treatment options may be complicated by resource constraints, for example, funding restrictions on certain treatments or lack of availability of facilities, for example, intensive therapy unit (ITU) beds and staff. Parents sometimes express the concern that doctors are influenced by a lack of available resources in their judgement about the appropriateness of treatment.

Previous legal decisions have focussed on the child's best interests, rather than how resources should be used. Courts have acknowledged that healthcare resources are limited but have generally declined to comment on how those resources should be allocated.

Questions of what treatments are in the child's clinical best interests must be separated from questions of available resources. Costs are an irrelevant consideration if a particular treatment clearly cannot provide overall benefit and is not in the child's best interests. Resource implications of providing treatment may be relevant in cases where the overall clinical benefit to the child is open to debate and where provision of the treatment may pose significant risks of harm to the child.

Healthcare teams may therefore not be justified in providing treatments that are highly expensive or limited in availability and that appear to offer little benefit to the child. Ideally, these decisions to limit treatment should be based on clear and consistently applied policies developed at the institutional, local or community level.78 Any decisions to prioritise patients and treatments should be fair and based on the patient's ability to benefit and should avoid discrimination, for example, race, age, gender, social status.79

Before declining parental requests for treatments, second medical opinions and ethics consultation may be helpful. Parents should, where possible, be given an opportunity to find an alternative provider who is willing and able to provide treatment.

The decision-making process should be open, honest and accountable; it should avoid factors that could introduce discriminatory access to healthcare. The ethical criteria for decision making should be clearly explained to all concerned.

The ELAC-RCPCH do not believe that decisions about who is offered intensive care should be motivated by resource constraints, but should be determined by whether such care was appropriate for that particular child at that time. However, this might be changed in exceptional circumstances, for example, Pandemic Influenza, although actions at this time would still need to be in accordance with an agreed moral framework.

3.3.4 Communication as part of decision making

3.3.5 Resolution of different opinions

Members of healthcare teams may have religious, moral or personal beliefs that produce significant conflicts over withholding or withdrawing LST within the team. For example, they may feel that they are unable to comply with decisions to withdraw CANH, even though it is felt to be in the child's best interests to do so. Conflicts of a similar nature may also arise between healthcare teams and families, and between family members. The latter may be especially problematic if there has been family break up or where parents have very different values and opinions over what should be done. Where these seriously impact on the child's care they should be sensitively explored and time and resources made available to try to resolve them (see ‘Support from external agencies’)

Where there is a lack of agreement within the team, between different teams or between the team and the family it is important to analyse its origins. Where disagreement stems from different understandings of the issues, more time to consider them and better communication may resolve the tension. Where there is anxiety about the degree of certainty concerning the medical facts, the need for further investigations that might help to resolve this should be considered. Input from religious advisors or other important sources of support to the family may be helpful. However, personal beliefs may dictate that some individuals decide in a particular way whatever the circumstances.

Unanimity on the part of the healthcare team is not essential (see ‘The basis of decision making by teams’). Those who do wish to mount a conscientious objection to a decision should ensure that their duties are covered.

Resolving a difference of opinion between the team and the family may occasionally require additional input from other agencies—see ‘Support from external agencies’. The family should continue to be fully supported by the team whilst the matter is being resolved. The care of the child must remain the main focus for all concerned.

3.3.6 Medical input

The involvement of another senior clinician may help in the communication of bad news or in decision making. In some cases obtaining second medical opinions will be advisable (see ‘Obtaining second opinions’). These may involve matters of fact concerning the child's condition, prognosis and treatment options and their outcomes. They may be provided from within the unit/hospital or by outside independent expert(s). The latter is (are) advisable in cases where there are fundamental disagreements between the family and the team, where there has been an erosion of trust and where differences in the values of the parties produce disagreements over what should be done.

A medical second opinion could be organised by the consultant responsible for the care of the child. However, to secure greater confidence in the independence of the second opinion, the family may wish to arrange this themselves with the help of their general practitioner or, if appropriate, with a representative from PALS. The family should be at liberty to change clinician and move to another consultant if this is possible.