This second article in a series of three explores the legal issues around medical decision making in children and young people who are approaching the end of life
When a child or young person is near the end of life, who makes decisions about their treatment? This article – the second in a three-part series on legal issues relating to end-of-life care – explains the legal complexities of medical decision making relating to children or young people who are nearing the end of life, or who are likely to die if they do not receive treatment. It covers capacity to consent, presumption of capacity, overruling decisions, parental responsibility, children’s best interests and the role of the courts in case of disagreement between parties. The first article in this series discussed decision making in adults and the third will discuss the legal basis around issues such as withdrawing and withholding treatment and assisted suicide.
Citation: Taylor H (2018) Legal issues in end-of-life care 2: children and young people. Nursing Times [online]; 114: 12, 49-52.
Author: Helen Taylor is visiting lecturer at the University of Birmingham, and freelance writer on health law.
Just as with adults, children may die suddenly and unexpectedly as the result of an accident, or their death may be expected because of a known, progressive, life-limiting condition. Regardless of circumstances or the person’s age, caring for a patient at the end of life and their loved ones is always challenging for health professionals, but it could be argued that this is especially true when the patient is a child.
Beyond the emotional issues associated with the death of an infant, child or young person, nurses will be aware that they must make decisions within a complex legal framework. Although they may be working within a wider multidisciplinary team, they need to understand the legal basis of decision making in end-of-life care for children.
The law relating to assisted suicide, the doctrine of double effect, and the legality (or otherwise) of withdrawing and withholding treatment are essentially the same whether they apply to adults or children (and will be explored in part three in this series). However, there are fundamental differences in relation to consent to treatment, as the law differentiates between:
- Adults (aged ≥18 years);
- Young people (aged 16–17 years);
- Children (aged <16 years).
These differences are common to any medical treatment, but this article focuses specifically on the challenges posed by end-of-life care.
The first article in this series outlined the adult patient’s rights in relation to consent to treatment. This second article explores the legal parameters of consent to, and refusal of, treatment when the patient who is dying is an infant, child or young person under 18 years of age.
For the purpose of the article, the terms ‘child/children’ and ‘young person/young people’ are used in their legal age-based definitions outlined above.
Capacity to consent
Unlike adults, there is no presumption of capacity for children under the age of 16 years. However, the case of Gillick v West Norfolk and Wisbech Area Health Authority and another (1986) established that children may have capacity to consent to some healthcare interventions in certain circumstances.
A child’s capacity to consent to (or refuse) a particular treatment will be decision-specific and depend on their ability to fully understand what that treatment involves. A child’s capacity to understand complex issues is likely to improve as they mature, so while they may, at a certain point in time, have the capacity to consent to certain treatments, it does not follow that they are able to consent to any treatment (Taylor, 2013a). The General Medical Council (2018) has provided ethical guidance that nurses may find useful when assessing a child’s capacity to make a decision (Box 1).
If a child does not have decision-making capacity, consent may instead be given by a parent or someone with parental responsibility as defined by the Children Act (1989), provided they have the mental capacity to make that decision (Taylor, 2013b). If more than one person has parental responsibility for that child, the law requires consent from only one of them to go ahead with treatment – as in Re R (A Minor) (Wardship: Medical Treatment)  4 All ER 177. Parental responsibility is further discussed at the end of this article.
Box 1. Assessing a child’s capacity to consent: General Medical Council guidance
In its section on assessing the capacity to consent, the General Medical Council’s ethical guidance for doctors on 0-18-year-olds says: “You must decide whether a 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 that investigation or treatment. That means you must make sure that all relevant information has been provided and thoroughly discussed before deciding whether or not a child or young person has the capacity to consent.”
Source: General Medical Council (2018)
While it is not possible to overrule a competent adult’s decision to refuse a treatment, the same is not true for children. Even if a child has decision-making capacity, their decision to refuse treatment may be overridden by a court or a person with parental responsibility. In these circumstances, treatment may lawfully be administered to a child, even if they do not consent to it. This situation clearly presents a range of issues, not least the professional and moral dilemmas associated with treating someone against their will. The courts recognise the impact this is likely to have on the therapeutic relationship and will take the child’s views into account when making decisions; the weight given to the child’s views will increase “with the age and maturity of the minor” (Re W (A Minor) (Medical Treatment: Court’s Jurisdiction)  3 WLR 758).
Although the consent of only one parent is required to proceed with a treatment already refused by a child, a court order may be sought if the proposed treatment is complex or potentially life-sustaining, as in Re M (A Child) (Medical Treatment)  52 BMLR 124. That case is described in Box 2.
Box 2. A child’s refusal of life-saving treatment
M was 15.5 years old when she suddenly became ill with a heart condition. Before her illness, she regularly participated in sporting activities. The extent of her illness was such that, without a heart transplant, she would almost certainly die. Although her mother consented to the surgery, M did not, so her doctor made an emergency application to the court for authorisation to perform this life-saving treatment.
The matter was treated with urgency and M was interviewed in hospital by the official solicitor so the judge could ascertain her views. M told the solicitor that she did not want to receive someone else’s heart and take medication for the rest of her life. She also told him that she did not wish to die.
On balance, it was felt that the onset and progression of M’s illness had been so sudden that she had not had the opportunity to come to terms with either her situation or the treatment doctors considered necessary. In view of this, the judge ruled that the heart transplant may go ahead without her consent (Re M (A Child) (Medical Treatment)  52 BMLR 124).
The judge acknowledged that this decision had not been taken lightly and explained that, even when the court exercises its powers under the inherent jurisdiction, this will be done with a strong motivation to respect the child’s wishes. That being said, the judge highlighted that the point may come when the court needs to exercise its powers in the child’s best interests and this is likely to happen “if the child is seeking to refuse treatment in circumstances which will, in all probability, lead to the death of the child or to severe permanent injury”.
If both the child and parents (or those who have parental responsibility for the child) refuse a treatment but health professionals think treatment is in the child’s best interests, the health professionals can apply to the High Court of Justice, which may override this refusal if it considers the treatment to be in the child’s best interests (Re B (A Minor) (Wardship: Medical Treatment)  1 WLR 1421). This would also apply if the child lacks capacity and the parents refuse treatment. For example, in Re C (A Child) (HIV Test) Times, 14 September 1999; 1999 2 FLR 1004, the parents of a baby whose mother was HIV positive refused to allow their baby to be tested for HIV infection. As the mother was breastfeeding, a health professional was concerned that the baby may have been infected. Although the court authorised the HIV test in the child’s best interests, it noted that any decision made that was contrary to the parents’ wishes must only be made after very careful consideration, thereby recognising the potentially serious implications of overriding parents’ right to make decisions about their own child.
In a situation in which the parents and health professionals disagree, an application can be made for the court to decide which course of action is in the child’s best interests. The parties may appeal against the court’s decision if they disagree with it, but the scope for appeal is not unlimited. Once opportunities for appeal have been exhausted, parties must comply with the court’s decision.
The case of Charlie Gard recently drew wide public attention to the often complex and difficult issues that can arise when a child is too young (or otherwise unable) to give consent, and the parents and health professionals disagree on the course of action. The case, described in Box 3, demonstrates the role of the court in addressing differences in the viewpoints of doctors and a child’s parents.
Box 3. Charlie Gard’s case
Charlie Gard was born in August 2016 and, for the first weeks of his life, appeared to be healthy. Unfortunately, he became unwell and was found to have a life-limiting genetic disease that very quickly led to brain damage and progressive impairment of bodily functions. Charlie received intensive care at Great Ormond Street Hospital (GOSH), but his condition continued to deteriorate and his prognosis was poor.
By the autumn of 2016, he was expected to live for only a few months. The medical team at GOSH wanted to withdraw active treatment but Charlie’s parents disagreed. As a result, on 24 February 2017, GOSH applied to the family division of the High Court of Justice for a declaration that ongoing active treatment would not be in Charlie’s best interests and that it may lawfully be withdrawn (Yates and Gard v Great Ormond Street Hospital for Children NHS Foundation Trust and Gard  EWCA Civ 410).
In his judgment dated 11 April 2017, Mr Justice Francis considered the relative rights of parents and their children in terms of making decisions, such as whether or not to consent to medical treatment. He highlighted the fact that, although parents usually decide what course of action would be in their child’s best interests, there may be times when they are not able to agree with doctors on that matter. He established that, in law, children have legal rights “independent of their parents” (Great Ormond Street Hospital v Yates and Gard  EWHC 1909 (Fam)) and that courts have the authority to overrule the parents’ wishes if those are deemed contrary to the child’s best interests. In these circumstances, the court’s guiding principle would be that outlined in the Children Act (1989), which, the judge explained, states that “when a court determines any question with respect to the upbringing of a child the child’s welfare shall be the court’s paramount consideration”.
At the request of GOSH, on 24 July 2017, Mr Justice Francis re-affirmed a number of declarations made at a hearing in April 2017. The starting point was that, given his age, Charlie lacked the mental capacity to make decisions about his medical treatment. The judge then established that continuing artificial ventilation was not in Charlie’s best interests and, therefore, that it would be lawful to withdraw it and give Charlie only palliative care. The judge further explained it was not considered to be in Charlie’s best interests to undergo nucleoside therapy, as his parents wished, and that it was lawful to not provide that treatment. The overriding principle was that all courses of action must be those “most compatible with maintaining Charlie’s dignity” and in his best interests.
Despite his parents’ efforts to appeal and overturn the court’s decisions, the final outcome was that Charlie’s ventilation was withdrawn and he passed away.
Unlike children, according to the Family Law Reform Act (1969) and the Mental Capacity Act (2005), young people are presumed to have mental capacity to make decisions regarding their care and treatment, unless – according to the Mental Capacity Act (2005) – there is reason to question that capacity. Parental consent is not necessary for treatment to go ahead if a young person has consented to it. However, it is considered good practice to try to involve parents in the decision-making process (General Medical Council, 2018).
If a competent young person decides to refuse a treatment that it has been deemed to be in their best interests to have, the issue is more complicated than it is in the case of a child. Case law supports the argument that, although the young person may be competent, they remain a minor and their refusal may be overruled either by:
- Someone with parental responsibility;
- A court (see for example, Re R (A Minor) (Wardship: Medical Treatment)  4 All ER 177).
If they are confronted with a case in which a competent young person refuses treatment that is considered to be in their best interests, health professionals should seek legal advice.
It is worth noting that, although much of the Mental Capacity Act (including the presumption of capacity) applies to young people, there are some exceptions that are directly relevant to end-of-life care. For example, neither a lasting power of attorney (LPA) nor an advance decision to refuse treatment (ADRT) can be set up by someone under the age of 18 years of age.
When it comes to end-of-life care, it is hoped there will be time and opportunity for parents, health professionals and the child or young person (if applicable) to work together to reach a consensus on what interventions and treatments should or should not take place. Sometimes, however, disagreements may arise and, even though court declarations can be completed as a matter of urgency, in some emergency situations there may be no time even for this. In these circumstances, treatment may have to be given without consent according to the overriding principle of best interests (British Medical Association, 2016).
If a child or young person dies as a result of a health professional’s failure to act, the health professional risks prosecution for manslaughter – see, for example, R v Bawa-Garba  EWCA Crim 1841 and R v Misra and Anor  EWCA Crim 2375.
The BMA (2008) has provided useful guidance regarding parental responsibility and it is important that nurses and other health professionals understand the principles of this as it relates to healthcare. The guidance defines parental responsibility as the “rights, duties, powers and responsibilities that most parents have in respect of their children” and explains that parental responsibility confers the right to consent to any healthcare treatment, provided it is in the best interests of the child. It may be necessary to make an application to the court if the parent makes a decision that is not considered to be in the child’s best interests.
The law relating to possession of parental responsibility changed at the beginning of the 21st century. Although the mother will automatically have parental responsibility, there is variance regarding the father’s rights across the UK. There is specific guidance for:
- Same-sex couples (both civil and non-civil partnerships);
- Children born outside the UK.
Nurses are advised to check the guidance for the country in which they practise and that are relative to the parents’ cirumstances.
In England and Wales, both parents of a child born after 1 December 2003 will have parental responsibility as long as both of their names appear on the child’s birth certificate. In England, Wales and Northern Ireland, the father will have parental responsibility if he is married to the mother of the child, whether or not this was the case at the time of the child’s birth or his name is on the child’s birth certificate.
In Scotland, a father has parental responsibility if he is married to the mother when the child is conceived, or marries her at any point afterwards. An unmarried father has parental responsibility if he is named on the child’s birth certificate (from 4 May 2006).
Parental responsibility is not lost and cannot be surrendered if the parents divorce or separate – even if the parent no longer has custody or any form of contact with the child. When a child is adopted, the adoptive parents will automatically have parental responsibility.
Those who have parental responsibility may delegate it to others, for example, a carer. Parental responsibility can also be delegated to a court-appointed guardian. If the child is subject to a supervision or care order, parental responsibility can be assumed by a local authority, possibly in collaboration with someone else who has parental responsibility.
If the child is born as the result of surrogacy, parental responsibility will rest with the biological mother and her husband if she is married, until the child is either adopted by the intended parents or parental responsibility is conferred to them by a court order.
A patient’s involvement in decision making regarding their care and treatment is key to providing high-quality, person-centred end-of-life care, but this poses its own specific challenges when the patient is a child or young person. Although older children and young people may be competent to make decisions about their care, in which case they should be actively involved in decision making, this may not be the case for their younger counterparts. Although the views and preferences of children deemed not competent to make the decision about treatment should be sought and considered as part of the decision-making process, ultimately it will be someone with parental responsibility who will consent to, or refuse, treatment.
When there is disagreement between parties about a particular course of action, it may be necessary to apply to the courts to obtain a decision about what is in the child’s best interests. Box 4 sums up the key legal points regarding decision making for children and young people, which apply to end-of-life care and to healthcare decision making more widely.
Box 4. Decision making for the care of children and young people: key legal points
- A child may be competent to consent to, or refuse, a treatment
- If a competent child refuses a treatment, this can be overridden by a court or someone with parental responsibility
- A young person is presumed to have capacity to make decisions regarding their care and treatment
- Refusal of treatment by a competent young person may be overridden by a court or someone with parental responsibility, but such cases are more delicate than when dealing with children, and health professionals should therefore seek legal guidance
- An advance decision to refuse treatment (ADRT) or lasting power of attorney (LPA) will not be valid if made by a person younger than 18 years of age
- Consent to treatment works differently in children (aged <16 years), young people (aged 16-17 years) and adults
- Children are not presumed to have capacity, but young people are
- Although parents can generally consent to (or refuse) treatment for their child, the child’s best interests are protected by the law
- If parents and health professionals cannot agree, the courts ultimately decide what is in the child’s best interests
British Medical Association (2016) Consent Toolkit: Emergency Treatment.
British Medical Association (2008) Parental Responsibility: Guidance from the British Medical Association.
General Medical Council (2018) 0-18 Years: Guidance for All Doctors.
Taylor H (2013a) Consent to treatment part 1: determining capacity to consent to treatment. Nursing Times; 109: 43, 12 -13.
Taylor H (2013b) Consent to treatment part 2: what does consent mean in clinical practice? Nursing Times; 109: 44, 30-32.