Let young people have a say on their own health

This latest proposal made me consider the voice of children and young people and their right to consent to medical treatment. To inform my response to the proposed legislation, I met with a group of 16- and 17-year-olds to discuss the proposals for the soft opt-out system for organ donation (in which consent is assumed unless they objected during their lifetime, or where family members can provide information to show the deceased person would not have wished to consent).

They were broadly supportive of the idea of reducing the age limit for joining the scheme to 16 – the current proposal suggests 18. Young people we have worked with often refer to the irregularity of age limits that apply to them in general – from voting age to smoking – and express frustration that there appears to be little logic applied. They pointed out that they could smoke at 16, but it is illegal to buy cigarettes until they have reached 18. In this case, 16 years old seems like a reasonable suggestion. At this age, young people can get married (albeit with parental permission), live independently (especially relevant for those who leave the care system), leave school, and can themselves have parental responsibility for their own child.

For those living independent of parents or guardians, it seems an anomaly that although they have control over most aspects of their own lives, they still cannot choose to donate their organs (or indeed opt out) after their death if they should so wish, since a person with parental responsibility would still have the right to veto this decision. Young people I met felt that parents should not be able to overrule a young person’s decision because, as one young person put it, “they could get emotional right after the death, but might be glad they did it later on”.

Appropriate information is vital
Providing appropriate information to young people is vitally important within this context. Regardless of the age at which young people become part of the organ donation scheme, all young people approaching that age must get clear information so they can make an informed decision and are aware of how the proposed scheme will affect them.

It’s an area I have decided to explore further. As the independent human rights institution for children and young people in Wales, I fiercely protect my independent status. However, there are times when it is appropriate to join forces with the government to help protect and promote children’s rights. Working with the Welsh government, I will be issuing a joint publication for young people that outlines their right to be involved in decisions about their health, health care or treatment.

Consent in health care settings often sees us pitching children’s rights against parents’ rights. This publication doesn’t promise to provide the solution to every ethical dilemma. It aims to empower children and young people to be involved in decisions about their own health, health care or treatment. It also aims to raise awareness among parents and practitioners that children and young people should be seen and treated as active citizens within our communities and that they have a right to a say in decisions that affect them. The fact that a child or young person’s view may not always be in line with their best interest should never be used as an excuse not to hear what they have to say.