Competing interests None.
Provenance and peer review Commissioned; externally peer reviewed.
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All clinical interventions require consent that is sufficiently informed and freely given by a person who is competent to do so. Obtaining consent respects the right of patients to make informed choices about what should be done to them and protects the consent-taker from the tort of battery
In UK law, adults are presumed competent to consent, and their competence is only likely to be questioned when their decisions or actions appear unwise and/or irrational.1 The age at which children under 18 years of age may legally consent or refuse treatment in the UK is more complex (see table 1). Children are often presumed to lack competence or have their competence challenged if they wish to make decisions that adults consider unwise or inappropriate.
Cases a-f (box 1) provide examples where professionals might question the child's ability to make the relevant decision, even when consequences may be neither serious nor far-reaching (examples a, d). The purpose of this article is to consider the ethical and legal nature of competence, to provide practical guidance as to how and by whom it should be assessed and consider under what circumstances specialist help is required.
Box 1 How should we proceed when faced with the following cases?
The 5-year-old who vehemently refuses a blood test to check their preoperative Hb level.
The 10-year-old who is convinced that he is the wrong gender and does not want to grow up in that gender.
The 13-year-old who does not want a life-prolonging heart transplant operation.
The 14-year-old who wishes to postpone or refuse surgery for an ingrowing toenail.
The 15-year-old with cancer who does not want further cycles of chemotherapy to be administered, despite the pleas of her parents.
The 16-year-old with Duchenne muscular dystrophy who, despite the threat to his airways of continuing oral feeding, does not want a gastrostomy to be inserted.
Nature of competence
Ethically speaking, individuals are competent if they are able to make decisions based on understanding and on rational reasons.2 Such decisions represent informed, free, self-determined (autonomous) choices and should normally be respected. The corollary is that an informed refusal should also be honoured.
The law defines competence in terms of capacity to undertake the relevant task.3 A principle common to all jurisdictions in the UK (box 2) is that a child's ability to consent or refuse treatment depends on their capacity to understand the nature, purpose and consequences of what is proposed. In England, an under 16-year-old child's legal capacity to consent to medical treatment is determined by fulfilling the criteria set out in the Gillick judgement; a child who meets them is ‘Gillick Competent’ (see box 2).4
Box 2 Law on consent in under 16-year-olds
England, Wales and Northern Ireland: Gillick competence
Provided the patient—whether a boy or a girl—is capable of understanding what is proposed, and expresses their own views, I see no good reason for holding that he or she lacks the capacity to express them validly and effectively and [for them] to authorise the medical man to make the examination or give the treatment which he advises.
Per Lord Fraser
Gillick v Wisbech and W Norfolk AHA  3 All
ER p 409e
I would hold that as a matter of law that parental right to determine whether their minor child below the age of 16 will have medical treatment terminates if and when the child achieves sufficient understanding and intelligence to enable their to understand fully what is proposed.
Per Lord Scarman, Ibid, p 422
Scotland: The Age of Legal Capacity Act 1991
A person under the age of 16 years shall have the legal capacity to consent on his own behalf to any surgical medical or dental procedure or treatment when, in the opinion of a qualified medical practitioner attending him, he is capable of understanding the nature and consequences of the treatment.
Because of its nature, assessment of competence may be difficult and contentious, since value judgements may be involved, even in circumstances where standardised test instruments are applied—for example, driving tests.
Competence is task-specific; hence, the nature and complexity of any decision and its impact on the child's future are relevant to its assessment. Decisions where outcome is not critical, for example, the timing or site of venepuncture and delay of simple elective surgical procedures, occur frequently and may be made in partnership by young children and professionals. This kind of decision-making may enhance a child's competence by providing an element of choice and self-determination in circumstances where there may be otherwise little opportunity to exercise it. It also enables the child to develop moral thinking by gaining practical experience of what choice means in terms of alternatives and outcomes.
Competent decisions should be free from influences that impede free choice. These include pain, fear, confusion, fatigue, health (physical and mental), medication, false assumptions and misinformation. The views of parents may influence a child's decision, some parents believing that their child should not exercise free choice below the legal age of majority.
A potential difficulty is that capacity for autonomy (selfdirected free choice) is a continuous variable, but determination of competence is dichotomous; in law a young person is or is not competent. Although there may be uncertainty about the level of competency required for a particular task, decisions about complex procedures which entail significant risk (eg, heart transplantation) require greater levels of competence than those that do not—for example, choice of site of venepuncture.5 The risks for the child and family may relate to the treatment itself or to the consequences of refusal.
Failure to cooperate with assessment of capacity or apathy about the process is not evidence of lack of competence.
Tests for competence
There is no simple single test to determine competence.6 The following are recognised as representing various levels of competency testing.
Ability to choose
The child recognises that there is a choice to be made and is willing to make it. An example might be the child's choice of arm from which blood is to be taken, or deferment of a simple procedure. This test neither questions the child's reasoning process nor examines the ability to understand.
Reasonable outcome of choice
The ‘reasonable outcome of choice’ test is the child's ability to make a decision that is considered to be reasonable, right or responsible. For example, the child who refuses a heart transplant in the context of acute cardiomyopathy without previous history of illness might be considered incompetent on this basis. However, this test is best seen as an alerting sign that the decision-making process is faulty. It will not detect those children who accept treatment while still lacking competence to do so. Although professionals may often use it to assess competence, it again fails to meet the Gillick criterion.
Choice based on rational reasons
A child's decisions are competently made if they appear rational, thought out and compatible with a life plan. For example, a refusal to undergo an appendicectomy for acute appendicitis is not compatible with a stated desire for a long healthy life, whereas refusal for surgery for an ingrown toenail could be. However, there are difficulties in distinguishing rational from irrational reasons and ascertaining their part in the decisionmaking process. In English law, tests of competency do not necessarily require demonstration of rationality.7
Ability to understand
The contextual ability to understand is central to Gillick competence. A child needs to recognise that there is a choice to be made and that choices have consequences. They should demonstrate their willingness and ability to make a choice either by themselves or by delegating that task to others—for example, parents. They should also demonstrate the ability to understand:
the necessity for treatment and the reasons for it;
the risks, intended benefits and outcomes of the proposed treatment and those of alternative treatments, including the option of no treatment.
The child should also be able to retain the information for long enough to make the decision in hand, or permit someone to decide on their behalf. However, it might be argued that the ability to understand is, of itself, insufflcient to enable veto of treatment in b, c and e (box 1).
Demonstration of actual understanding- rather than ability to do so- requires high levels of competency. Arguably, Gillick competence requires a child to demonstrate an actual understanding rather than potential for it, whereas for adults the lower standard applies. This is likely to be the case when there is a need to make a complex decision with serious consequences for child and family—for example, refusal of heart transplantation or chemotherapy (c, e).
A suggested mechanism for relating levels of tests of competency to the decision in hand is shown in table 2.
Theoretical basis for development of competence to consent
In adult medicine, the practical benefits of openness, collaboration and information sharing in decision-making have been shown.8 Historically, these principles have had less influence in paediatric clinical practice9 perhaps because previous theories of child development have emphasised what the child cannot achieve.10 Later theorists, while acknowledging limits to full understanding, have argued that a child's construction of a new understanding can be achieved with ‘able instruction.’11 12 Competence may be enhanced by sharing information that increases understanding of current treatment, its alternatives and the potential consequences of all options.8
Development of intellectual capacities and emotional responses relates both to continuing brain development and life experiences. Older children are able to both generate more alternatives in decision-making and retain information for longer. Emotional maturation includes the development of the ability to consider the consequences of actions both for self and for others.3 Thus, when confronted with hypothetical situations, 14-year-olds showed similar levels of competency to adults. Nine-year-olds also reached very similar conclusions to those of 14-year-olds and adults although showing some defects in understanding and reasoning.13 However, this is not usually taken to indicate that all requests by 9–14-year-olds should be honoured—for example, d, e, f.
Children also have realistic perceptions of the age at which they believe themselves and others to be competent to make wise decisions about medical treatments without parental involvement,14 and in part this may be determined by their own experience of illness. Children's personal experiences of illness and their responses to it can provide them with greater insight and understanding than children of comparable age (and indeed some adults) who lack such experience. However, children cannot be expected to demonstrate competence without first receiving appropriate information15 (box 3).
Box 3 Assessing competence: testing understanding of information
Necessary information questions to be answered
What is the illness/condition and what are its effects?
What treatments/investigations are necessary and why?
When does this need to be done?
What does the treatment mean to me, and how will it affect my life?
What happens if I do not have the treatment?
What are the alternatives and their effects?
What are the practical consequences for me and my family on school and friends?
Practical considerations in assessing competence
Although doctors have the overall legal responsibility for assessing competence to consent to treatment, other members of the multidisciplinary team (MDT) may be equally able to do so. Both health professionals and others (eg, teachers, care workers, etc) have an ethical duty to enhance competence by appropriate means (see box 4).8
Box 4 Techniques for enhancing competence
Facilitate complex decision-making by breaking the process down into smaller but linked choices.
Overcome communication difficulties by appropriate use of other services signage for those with speech or hearing problems and the use of independent translators.
Use innovative and age-appropriate techniques to convey information.
Consider the presence of a third party, a trusted adult, to help and support the child, but be aware that for some children, the presence of a third party may inhibit rather than facilitate discussion.
Provision of an appropriate, quiet non-threatening venue away from immediate clinical area.
Provide a sympathetic supportive but objective doctor– patient relationship.
Use appropriate symptom management to reduce confounding variables—for example, pain, anxiety.
Defer decisions if it is possible to do so without compromising child's clinical health.
Attempt to understand the reasons and motivation for refusal of treatment or non-participation. This will enhance the child's feeling that whatever the outcome, the child is valued for themself.
Assessors of competence should have the necessary skills and must understand the relevant legal test and how to apply and evaluate it. They should be able to talk to young people, engage in dialogue with them, give and receive information, and elicit views without coercion or distortion. They should also recognise their own practical limitations and any deficiencies in information about the child and their illness. They should know what information the child has received about their condition and its treatment, as well as any information the child has not been told.
Assessing competence objectively may produce potential conflicts of interest for doctors, especially when the young person's understanding is a function of how well they have responded to their doctor's teaching. Equally the doctor may be the person recommending treatment and may have formed the opinion that it would be rational and reasonable to consent to it. Doctors and others should not underestimate capacity in order to achieve an outcome that they believe is in the child's best interests. Realistically, it is extremely difficult for a person under the age of 16 to override the decision of their parents or v medical team, particularly when this involves a withholding of consent.16 However, all concerned have a duty to ensure that the child's view has been fully taken into account in accordance with their age and maturity.17
Therefore, it may be preferable or even essential to involve others (including individuals outside the immediate healthcare team—for example, teachers, care workers) in the assessment of competence, especially when there are doubts as to whether the necessary degree of objectivity can be achieved. This is particularly likely in highly emotive contexts—for example, when the outcome of a particular treatment or lack of it could lead to the patient's death.
Assessment of competence
Both general and specific factors need to be taken into account.
Formal assessment of competence requires examination of how a young person deals with a particular decision rather than the application of standardised tests, but some analysis of the young person's capacity to understand and assess risks is essential.
Over time, therapeutic relationships evolve, children grow and develop, and their response to the experience of illness alters. As competence is both task-specific and contextdependent, its assessment should also respond to changing circumstances.
It is important to obtain in advance relevant background information about the child and their illness—for example, details of daily life and experience of illness. Although information from those close to the child (eg, parents and carers) may be important, it may also lack the objectivity of that obtained from professionals who have developed a relationship with the child. More complex assessments require more detailed background knowledge of how the illness may affect the child's ability to make decisions. However, there should be no preconceptions about the child's ability based on this.
It is also important to allow sufficient time for the assessment unless the specific circumstances of the child's illness, for example, the need for urgent action to prevent serious consequences for survival or for future health, dictate otherwise.
These should include the following.
Developmentally appropriate assessment
A child's capacity to understand language changes over time. Hence, any assessor must tailor their communication (verbal and non-verbal) to suit the developmental stage of the child. A variety of psychological techniques, for example, verbal discussions, play, gestures, narrative and drawings, have been developed that can meet the communication needs of the individual child.18
Exploration of systemic influences
External pressures, including the influences that both the family and the medical team may have, directly affect the ability of young people to make truly freely informed choices about their medical care. Assessment of the impact of these factors is particularly important when interpersonal conflict is involved. For example, an adult with strong oppositional views (whether professional or parent) can significantly influence a young person's freedom to choose. The emotional impact of such conflict can also affect the young person's capacity to evaluate their position.
Assessment of emotional state
Significant anxiety may compromise a child's ability to fully attend to, process or recall information.19 Children with low mood may also lack the capacity to retain complex information, due to either withdrawal or preoccupation with other thoughts. Children who are unwell or who are embroiled in either interpersonal or intrapersonal conflicts about how to proceed with medical treatment may be particularly vulnerable to feeling anxious or depressed.
Structured tests of cognitive development provide general rather than task-specific information. Such assessments, including traditional tests of intelligence, can inform the wider assessment of competence but should not be used as the only determinants of understanding. However, cognitive tests can assess a child's ability to understand cause and effect, to differentiate between self and others, to understand the intentions of others (theory of mind) and to comprehend past, present and future. A cognitive assessment can also help assess for formal psychiatric disorders and, in rare cases where they are present, the impact that this might have on a young person's understanding of reality.20
However, a standardised test of cognitive ability may underestimate what children can achieve in daily activity, and failure on a mental task does not mean that a cognitive skill is missing. By engaging the young person in a dialogue about relationships, it may be possible to discern their ability to recognise the needs of others and ascertain their own understanding. Children's competence to make unfamiliar decisions can be enhanced if they are shown new strategies to achieve this.
Ability to balance risks and benefits
The ability to balance risks and benefits depends on experience as well as cognitive ability. A young person needs to show that they have understood or have the abilities to understand the necessary information about their illness (see box 3). These abilities can be explored by talking with the child about their illness and how it may impact on their hopes and fears for the future.
A full risk assessment can help predict the actual impact that a child's consent or refusal will have for themselves and their family. It should include the impact of the decision upon their physical and mental health, with especial regard to the immediate and longer-term impact that interpersonal and intrapersonal conflicts could have.
When to involve a psychologist (and others)
Their involvement, or that of some other independent third party, should be considered when a child's competence is the subject of serious concern and when those directly involved feel that they do not possess the skills or objectivity necessary to assess it. By eliciting a young person's recall and understanding rather than by shaping or directing it, this process allows an objective exploration of their understanding. It reduces the possibility of a young person simply repeating information they have just heard or being unduly influenced by their doctors' wishes.23
Some medical teams routinely employ clinical psychologists in this role. In others, the clinical psychologist may only become involved when treatment choices are particularly complex, or there is conflict between the medical team and the family, or between the child and their parents. For psychological treatments, it is clearly more appropriate that the clinical psychologist or psychiatrist assesses competence.
When disputes over competence cannot be resolved by this process or in an especially contentious or difficult case, legal opinion should be sought because courts have the ultimate legal authority to interpret case or statute law.
Requests for assessment of competence are likely to occur when a child wishes to make healthcare decisions that others consider unwise or irrational. While the criteria for competence are defined in law, no single test for assessing such competence exists. Assessments of competence need to be undertaken within the general dynamic of working in collaboration with children and families, and the fostering of relationships based on trust, mutual respect and information sharing. There are strong ethical and clinical obligations to involve children in decisions about healthcare to the extent that they are willing and able to do so. By adopting this approach, the need to make dichotomising distinctions between competence and incompetence is likely to be reduced, to the general benefit of all.
Competing interests None.
Provenance and peer review Commissioned; externally peer reviewed.
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