Moving from dependence to autonomy: Adolescents’ decisions regarding their own health care
Adolescence represents a time of transition between the dependence and vulnerability of childhood and the autonomy (the capacity and ability to make free informed choices) of adulthood. Young children lack this capacity; others have the moral and legal authority to act for them, provided they act in child’s best interests.
Two conflicting obligations
Healthcare professionals have a fundamental duty to act in the best interests of their patients. This entails two sometimes conflicting obligations, namely to produce as much overall benefit as possible and to respect as much autonomy as the patient is capable of exerting. Great emphasis is placed on the duty to respect patients’ autonomy in adult healthcare, no matter what their choice is, but what duties should be owed to adolescents? To what extent should their evolving capacity to consent or refuse treatment or their right to confidentiality be respected? The latter is regarded as especially important by young people because it underpins future relationships with professionals and is founded on mutual trust.
Legally, it seems that adolescents’ right to consent and confidentiality depends on their capacity to exercise it. Ethically, professionals have a duty to respect and enhance adolescents’ evolving capacity to make health care choices and respect their confidentiality, provided that doing so does not produce harm to adolescents or to others.
Medical decision-making: an evolving capacity
The rate at which adolescents’ capacity for medical decision-making evolves depends on the complexity of their medical condition, their understanding or experience of it, and other contextual factors such as culture, family and belief systems. Evidence suggests that 14-15 year olds have similar capacities to adults (Weithorn and Campbell,1982).
In English law, the capacity of under 16 year olds to consent is determined by whether they have achieved “sufficient understanding and intelligence to enable them to understand fully the nature and purpose of what is proposed”. But this does not mean, as might logically be supposed, that they have a right to veto treatment that is in their best interests. This apparent inconsistency can be justified by the obligation to protect vulnerable individuals from harmful or inappropriate choices: for instance, refusing a lifesaving medical intervention such as transplantation because they are frightened to undergo it or do not understand the consequences for their family if they do not.
Adolescents may not always act in a way that is consistent with their presumed capacity for rational thought and for them analytic processes may not be the primary means of decision making. They may show a significant emotional component to decision making because of their concerns with external influences like others’ perceptions and peer group pressures. Purely cognitive assessment of capacity may not take sufficient account of emotional and psychological components of decision making and their impact in real life situations. This dualism between the rational and the emotional appears important in considering adolescent approaches to core moral judgments of which treatment decisions may be an example.
Our increasing understanding of the process of brain maturation provides a possible explanation of the adolescent’s emotional responses to decision making. The Prefrontal Cortex (PFC) is not fully developed until the 20’s. It is considered the seat of the ”rational” brain, since its functions include high level reasoning, decision making, impulse control, assessment of consequences, forward planning behaviour modification and priority setting. In contrast, the amygdale, concerned with the formation and storage of memories associated with emotional events, is relatively more developed in adolescents. This relative lack of development of the PFC in adolescents might explain some of their recognised behaviours e.g. impulsivity, inflexibility, emotional volatility, risk taking “short termism”. These behaviour traits, to the extent to which they pose risks of harm to the adolescent or others, may cause professionals to question how much they should respect an adolescent’s right to confidentiality and how much they should intervene to prevent harmful outcomes.
Confidentiality balanced by transparency
An adolescent’s objections to disclosure of information should largely be honoured, but it is reasonable to try to persuade them to permit disclosure if it is felt in their best interests to do so. Where refusal is persistent, the need for disclosure must be justified by the belief of serious risk of harm to the adolescent or others or by legal requirement. For example, the need for disclosure may be justified in a case where an adolescent would visit the emergency room with an inflicted wound but would refuse to allow details of it to be disclosed to investigating authorities. Even so, transparency requires that the adolescent is told that information will be disclosed and the reasons for it.
Although adolescents can make rational decisions, they are arguably less likely to do so in conditions of high emotion or intense pressure. They are more likely to act impulsively or without full consideration of the consequences. This may be the case when adolescents refuse treatment that is intended to prevent death or serious harm. Assessment of their capacity to refuse needs to take account of their experience of illness or treatment, any settled values they have and the practicalities of delivery of the treatment itself (it would, for example, be practically difficult to administer transfusion or intravenous drugs to a well grown sixteen year old without his co-operation).
Management of healthcare problems in adolescents involves a delicate balance between protecting them from harms that may be an intrinsic consequence of their developmental state, whilst respecting them as persons in whom capacity is developing and should be fostered. Practically, this requires involving adolescents in discussions and decisions, and in recognising and acknowledging their developing capacity. However it is also important to be clear that some decisions are flawed and should be questioned and that some limits to recognition of full autonomy may be necessary and ethically justifiable.
|Author :||Dr Vic Larcher
Consultant in Paediatrics and Clinical Ethics
Great Ormond Street Hospital
Larcher, V., Elias-Jones, A., Mepani, B., Brierley, J. (2011).“This House believes that we have gone too far in granting young people the responsibility for making decisions about their own health care.” A record of a debate held in the Ethics and Law session of the RCPCH Annual Meeting, York, 2009. Arch. Dis Child, 96: 123-6
Larcher, V. (2005). Consent competence and Confidentiality. in ABC of Adolescence. ed. Russell Viner, BMJ books: Blackwell Publishing. pp. 5-8
Weithorn, L.A., Campbell, S.B. (1982). The competence of children and adolescents to make informed treatment decisions. Child development, 53: 1589-99