When you refuse requests, the reasons for the refusal should have which qualities?

BMJ. 2005 Feb 12; 330[7487]: 353–356.

Adolescence represents the final phase in the transition from the dependence of infancy to the autonomy of adulthood. It can be difficult for young people, parents, and health professionals alike, because of the nature and speed of change. Uncertainty over ethical and legal rights and responsibilities may lead professionals to refuse to see adolescents aged under 16 years on their own for fear of incurring parental wrath or even legal action. Disputes may arise in relation to an adolescent's competence to seek, consent to, or refuse medical treatment, and his or her right to confidentiality. In most cases these disputes can be resolved by discussion, compromise, and partnership, but in extreme circumstances the courts may be involved.​

Balancing rights and responsibilities in adolescent care

Ethical and legal principles

All professionals have a duty to act in the best interests of their patients. Adults have the right to decide what their best interests are and to have their choices respected. Legally, adolescents' rights to make decisions for themselves depend on their ability to do so [called competence]. Ethically, however, professionals have a duty to respect the rights of adolescents, irrespective of their ability to make decisions for themselves, provided that to respect these rights does not result in harm to the adolescent or to others [as laid down in the UN Convention on the Rights of the Child].​

Table 1

Welfare checklist of the Children Act

The legal principle underpinning provision of health care for children [under 18s] in the United Kingdom is that their best interests [welfare] are paramount. Legal duties are defined both by statute—for example, the Children Act 1989 and the UK Human Rights Act 1998—and by common law, which derives general principles from specific cases. UK law respects the rights of families to privacy, autonomy, and minimal outside intervention but acknowledges that parental rights decline during adolescence. In deciding best interests, courts apply the welfare checklist of the Children Act and consider relevant articles from the Human Rights Act.​

Table 2

Relevant human rights [UK Human Rights Act 1998]

Consent for medical treatment

Obtaining consent for medical treatment respects the right of young people to self determination. To be legally valid, consent must be sufficiently informed and be freely given by a person who is competent to do so.

If young people lack the competence to make decisions, parents have the legal power to consent on their behalf. Matters are more complex when young people are competent but oppose their parents' wishes or refuse treatment.​

Table 3

Those allowed to give consent for treatment for young people

Competence

Many adolescents are competent in that they possess qualities associated with self determination—that is, cognitive ability, rationality, self identity, and ability to reason hypothetically. Many are able to consider how their actions affect others as well as themselves. In law an adolescent's competence is defined by their capacity to perform the task in question. Some tasks—such as owning pets and driving cars—are defined by age.​

Table 4

Legal definition of competence

In health care, however, understanding, intelligence, and experience are important qualities. Over the age of 18 years competence is presumed. In England, Wales, and Northern Ireland adolescents aged 16-18 can consent to treatment but cannot necessarily refuse treatment intended to save their lives or prevent serious harm. Adolescents under 16 may legally consent if they satisfy certain criteria. This is easy for uncomplicated procedures such as venepuncture but is more problematic for complex, risky procedures such as open heart surgery. In Scotland competent children may consent to treatment irrespective of age; a person may make decisions on a young person's behalf only if the young person lacks the capacity to do so.​

Table 5

Criteria for testing competence

Competence is context dependent and may fluctuate. Pain, environment, and mental state may reduce competence, but experience of illness may increase it. In law, assessing competence is the doctor's responsibility, though other professionals with appropriate skills may be delegated to help. Refusal to cooperate with assessment should not lead to a presumption of incompetence. Some competent adolescents may wish to share decision making with trusted adults or let others decide for them. Assessment of competence must be done in situations that maximise competence—after giving adequate information in an appropriate environment..​

Adolescents have the right to receive information in a form and at a pace that they can assimilate and in an environment that respects their privacy and dignity and spares them embarrassment

Information

Any competent adolescent can legally authorise medical procedures provided that they have the information that a reasonable person making a choice in similar circumstances would want.

The extent to which parents are involved needs sensitive handling. Adolescents may wish to ask intensely private questions—for example, on sexual matters—that exclude their parents.

Parents may wish to protect young people from painful and distressing facts—for example, about their own illnesses—but failure to disclose such information may cause more subsequent pain and suffering to the adolescent. Some families and cultures may not wish to involve young people in decision making. Adolescents not able or not wanting to make their own choices still have the right to information in a comprehensible form.​

Table 6

Coercion

Refusal

Refusal is especially problematic when the proposed treatment will prevent death or significant harm and the risk-benefit ratio is favourable—for example, an appendicectomy for acute appendicitis.

When the risk-benefits are more equivocal a wider consideration of best interests is necessary. Legal intervention may be necessary if disputes cannot be resolved by negotiation and mediation. Courts have overturned adolescents' refusal of psychiatric medication, blood transfusion in leukaemia, and heart lung transplantation.​

Table 7

Refusal and forced treatments

Confidentiality

Teenagers rate confidentiality as one of the most important aspects of medical care as it underpins future relationships with professionals and is based on mutual trust.

They wish to know that information given in confidence will not be divulged to others—for example, parents, school, and police—unless they specifically wish. They may test professional assurances of confidentiality. The right to confidentiality exists independently of the competence to consent to treatment.

Unlike for competent adults, an adolescent's right to refuse treatment depends on the circumstances

Objections to disclosure of information should mainly be honoured. Disclosure of information may be required by law or for the purpose of protecting the adolescent or others from risk of serious harm—namely, in the public interest. The adolescent should be told that information will be disclosed and the reasons for it.​

Table 8

Situations in which confidentiality for adolescents is especially important

Professionals may obtain practical guidance about disclosure from their own professional organisations or from their trust's legal services. Information leading to personal consequences—for example, informing agencies of a patient's epilepsy—should not be disclosed without consent unless public interest or legal obligation require it.​

Table 9

Communicating with adolescents about treatment options and establishing competence

Particular problems may arise if an abused adolescent refuses permission to disclose information to social services or the police. Information about incompetent patients can be disclosed because it is in their best interests, and there is a statutory obligation to investigate abuse.​

Table 10

Practical methods to help ensure confidentiality

Similarly, attempts should be made to persuade competent adolescents to permit disclosure. In the face of sustained refusal, disclosure must be justified by a belief that there is a serious risk of harm to the adolescent or to others. Adolescents should be informed of the intention to disclose unless to do so would place them at further risk of harm.​

Table 11

Situations in which confidentiality should not be kept when dealing with young people

Matters relating to sexual health—such as contraception, treatment of sexually transmitted diseases, and termination of pregnancy—are also problematic in that issues of competence and confidentiality may coexist. Legal guidance in handling such situations does exist and is equally applicable to issues other than contraception. Adverse consequences may follow if an adolescent's concern about confidentiality leads them to specialist clinics that do not have access to their full health records.​​

Table 12

Fraser guidelines* on young people's competence to consent to contraceptive advice or treatment

Figure 3

Conclusions

Issues of consent and confidentiality are central in many clinical interactions with adolescents. Services that are not considered confidential are considerably less likely to be used by young people. Those who work with young people must have a clear understanding of consent and confidentiality and also ensure that the services they work in have policies and practices that increase confidentiality and competence among teenage patients.

“Good parenting involves giving minors as much rope as they can handle without an unacceptable risk that they will hang themselves” Lord Donaldson in Re W [1992] 4 All ER 627-633

Much the same can be said for adolescent medicine

Notes

This is the second in a series of 12 articles

Vic Larcher is consultant paediatrician at Barts and the London NHS Trust.

The poster is published with permission of London Adolescent Network Group.

Competing interests: None declared.

The ABC of adolescence is edited by Russell Viner, consultant in adolescent medicine at University College London Hospitals NHS Foundation Trust and Great Ormond Street Hospital NHS Trust [ku.ca.lcu.hci@renivr]. The series will be published as a book in summer 2005.

Further reading and resources

• • British Medical Association. Consent, rights and choices in health care for children and young people. London: BMJ Books, 2001.
• • Royal College of Paediatrics and Child Health. Responsibilities of doctors in child protection cases with regard to confidentiality. London: RCPCH, 2004.
• • General Medical Council. Confidentiality: protecting and providing information. London: GMC, 2000.
• • Alderson P, Montgomery J. Health care choices: making decisions with children. London: Institute for Public Policy Research, 1996.
• • Department of Health. Best practice guidance for doctors and other health professionals on the provision of advice and treatment to young people under 16 on contraception, sexual, and reproductive health. London: DoH, 2004. [Gateway reference No 3382.]
• • “Confidentiality Toolkit” [a pack designed to help general practice teams review and develop their policy on confidentiality], available free from the Royal College of General Practitioners [tel 020 7581 3232; email ].

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