Children’s rights to refuse treatment

Fourteen-year-old Scott has learning difficulties and suffers from a life-threatening condition. He needs an operation but is refusing to go ahead with it after a family member explained it in a scary way. In a letter detailing his fears he wrote: "Will it hurt when I wake up from my operation?"

Clinical director at the Royal Hospital for Sick Children in Edinburgh Zoe Dunhill has written back: "Yes, but there will be a special doctor there who will treat the hurting when you wake up."

"We try to explain things in a way that is appropriate to the child, " Dunhill explains. Soon, she hopes, the approach will help her overcome Scott's resistance to the treatment.

Dealing with children who refuse consent to treatment which doctors and parents deem necessary is an increasingly important part of children's medicine in Scotland.

Every month at this, one of Scotland's flagship children's hospitals, several children refuse to undergo procedures.

Sometimes the best efforts of staff to persuade them to co-operate fail. Some areas are particularly prone to problems – notably children who are scheduled to have rotten and infected teeth removed under general anaesthetic, an operation which takes place several times a week. Regularly, children refuse to go along with such treatment. If they don’t, doctors know they may return with abscesses, or as emergency patients.

This may seem surprising, but Scotland’s children have some of the strongest rights in the world when it comes to medical treatment. Nevertheless the children’s commissioner for Scotland, Kathleen Marshall, believes the situation needs clarification and is consulting on whether she should make it one of her priorities. Raising awareness of the issues could enable families to approach these situations more sensitively.

Scotland’s law gives children the same rights as adults to reject treatment as long as they understand it. But it has never been tested in court and how it works in practice is much more variable. The law has been tested in other countries including England and Canada, in cases which are often emotive. Experts believe it is only a matter of time before a case reaches the Scottish courts over a child’s right to refuse consent.

Although a child old enough to understand the implications should be allowed to withhold consent, the lack of formal advocacy may make it hard for children to enforce. Historically, children used to only get a say on reaching puberty; the key test nowadays is whether a child is “competent”.

“If the medical team were to decide a child is not competent it would be very difficult for the child to argue with that. Unlike everyone else in the situation, they don’t have a formal way of making their voice heard, ” says Marshall. Under Scots law, parents cannot override the decision of a competent child as they can in England, something she said many parents were unaware of.

The standard of protection is higher than the UN convention on the rights of the child which states decisions should be “in the best interests of the child”.

It is a complex area – and more complex still in cases where children have learning disabilities. The fears of parents themselves may also be a significant factor.

Marshall supports the child’s right to be part of the decision-making process but is concerned that a child might be allowed to die if they refused life-saving treatment.

“I do find that very difficult, ” she adds, though she believes every case needs to be looked at on its merits. “There is actually some evidence that children who have been suffering from on-going, life-threatening medical conditions are better able to make these kind of decisions because they are used to engaging with the issues.”

In England, courts have consistently overriden the rights of children to refuse. In her paper If You KnowWhat’s Good For You: Refusal of Consent to Medical Treatment by Children, legal expert Sarah Elliston shows that down south, children have very little right to reject medical opinion.

In the case of E, a 15-year-old boy with leukaemia who did not want to have a blood transfusion as he was a Jehovah’s Witness, was ordered to have it by the court which ruled that he did not understand the implications of his decision.

English courts have also ruled that where a child refuses treatment which doctors say is in their best interests, parents can override that decision. Effectively children have a say only if they agree with the adults.

Elliston says: “The law in England permits those under 18 to have their medical decision respected but only if they knowwhat is good for them and accept the treatment that is proposed. Such a situation is illogical and unjust and may have wider implications for the way in which children are viewed.”

In contrast, she argues that Scottish courts do not appear to have the power to intervene where a child is competent.

Elliston refers to a Canadian case where a child was allowed to refuse a blood transfusion because she threatened to physically resist and pull the needle out of her arm.

This raises another important issue, she says, which also applies in the UK: “Would a child who had the strength to physically resist treatment have their objection to treatment respected, whereas another child seeking to resist using only argument, have their objection ignored?”

Children’s parliament representative Cathy McCulloch says there is a need for advocacy so that children’s voices can be heard, especially in life-or-death situations.

“It seems children only have these rights if adults decide to give them to them. Some people think: ‘Children’s rights? That’s all we need’ and then you get others who think children can take very mature decisions.

And adults are the ones with the power.

“Preparing children in the right way and being respectful and truthful with them is really important. They should feel that it isn’t a them against me situation.”

Glasgow University medical ethics professor Sheila McLean explains: “It is the medical team who decide if the child is ‘competent’ and it would be very difficult for a child in practice to go against that.”

But, at the Royal Hospital for Sick Children, Zoe Dunhill says that even children with learning disabilities and special needs have treatment explained to them as far as is possible, and in most cases must agree to surgery before doctors will go ahead.

The hospital takes the children’s rights issue extremely seriously, she says. “We try to work with the children and find out what they are objecting to. Many of them are fearful and we try to overcome that.”

They try to prepare children in an ageappropriate way, with the majority responding well. Where children do refuse treatment, the hospital tries to negotiate with them. On one recent occasion, a seriously ill child said she no longer wanted to continue with life-saving treatment. Dunhill sought medical advice and was told that when the child became unconscious she would be able to proceed on an emergency basis without consent – a decision some consider contentious. After being told this, the child allowed treatment to continue.

At the sharp end is Ishbel Proctor, who leads the hospital’s team of play specialists.

She works with nurses to prepare children for surgery using a range of approaches – from Olly the puppet who demonstrates having an anaesthetic, to the motorised pedal cars children can use to drive themselves to theatre.

“We have the time and skills to communicate with children, ” says Proctor. “Sometimes we are able to help them to express their feelings. We do see ourselves to some extent as helping children to be heard.”

Sometimes parents can hinder the process of preparation. Unaware that children have to consent, they sometimes refuse to allow play specialists to prepare the way and instead tell the children they are going for a treat, she says. But this could backfire and end up with the child refusing to co-operate.

Other parents are over-anxious. “They may have had a terrible experience as a child in hospital and not have realised things have changed. So they may be trying to work out their anxieties with you when you are trying to work with their child.”

Children who refuse and won’t be persuaded go back to the ward where more work will be done to try to persuade them.

“Sometimes parents think we are here to make the children have the treatment and they are surprised that we won’t hold them down, but that’s not how we do things.”

Children who withhold consent Debbie, 13, suffers from a life-threatening illness which requires invasive and ongoing treatment. She told doctors she wished them to stop treatment even though she knew she would die as a result. After attempts by staff and family members to persuade her failed, the hospital sought legal advice. They were told that when Debbie became unconscious, they would be entitled to treat her against her will. The hospital team went back to Debbie and told her she would be treated anyway and after this, she decided to allow treatment to continue.

Wayne, six, was admitted to have several rotten, infected teeth extracted under general anaesthetic. His mother told him he was going to a party. After driving himself to the operating theatre on a motorised pedal car, he was unhappy at having most of his teeth removed and refused to comply with medical staff or his mother. After attempts to persuade him failed, he was taken back to the ward. Staff explained he might suffer abscesses and gum disease and may have to return as an emergency patient if he refused treatment. Later in the day he was offered the opportunity to have an anaesthetic and return to surgery. He refused and left hospital without having the teeth out.

Mark, 14, had an unidentified illness. Doctors wanted to take blood but he refused. He had three sessions with the hospital play specialist to help him understand the procedure and his feelings.

At no point did he explain the reason for his refusal, but after the third session changed his mind and the tests went ahead.

Josie, 11, is severely disabled and has ongoing care. Like other vulnerable children, she was offered a flu jab to help against what could be a dangerous illness for her. After the treatment was explained, she made it clear that she didn’t want it.

Staff worked with her and placed her with a peer group at the hospital who were all having the injection. After witnessing the other children having it, Josie changed her mind and allowed staff to proceed.

Jason, 12, is a shy, inarticulate child whose ears stick out. He was scheduled for a small cosmetic operation to pin them back but said at the last moment that he did not want surgery. Staff worked with him and he told them that he was not bothered by his ears although his parents considered it might become a problem for him later. The operation did not go ahead.

These cases are all from the Royal Hospital for Sick Children. Names have been changed so as not to identify them.

The Scottish Herald
March 8th 2005