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Should Children Be Involved In Medical Decisions?

11/3/2014 | By:

How much should you tell your child or adolescent about their diagnosis and treatment? How much of a say should your child have in deciding their treatment? Here are a few guidelines for every parent

Ask any parent what their worst fear is and they will inevitably tell you that they worry about something happening to their child. Sadly, for many parents, at some point that fear becomes an actuality. In recent years there are more and more and more children facing serious illnesses, be it chronic or acute.

 

Trying to cope with the reality of a child who is seriously ill is one of the toughest challenges that any parent can face. There is nothing a parent wants to do more than to protect their seriously ill child from worry or fear and most parents will go to any lengths to try and achieve that. Some parents lie to their kids about the diagnosis, some sugar coat the information and very few are completely open and honest. Even parents who normally have open communication channels with their children struggle with what exactly they should tell their children in this situation.

 

The question is ethically, what is the right thing to do?

How much do you tell your child or adolescent about his diagnosis and prognosis? Do you let them have a say in what type of treatment they should get and whether or not to get any treatment at all? After all, they are the ones who are going to be poked, prodded and have to deal with the side effects of medications and treatments. Can you really physically hold down a strong teenager the whole length of a treatment and force them to receive it?

 

The debate about the rights of children regarding their own medical treatment is nothing new and all the arguments have their merits. While the law differs across the UK, in general once a child reaches the age of 16 they are presumed to have the capacity to consent. Depending on the circumstances, the child's maturity and their ability to understand what's involved, a child under 16 may also be deemed competent.

 

An example of such a case occurred in 2008, when 13 year old Hannah Jones won the right to refuse treatment. Hannah had been ill for eight years with cancer and a heart condition and she won the right to refuse a heart transplant. That said, a few years later at age 16 she changed her mind and underwent the surgery.

 

As with anything else, there is no one decision that is right for all children. This is true also because of the differences in age as well as the fact that each child is an individual with their own unique traits and capabilities. In addition, each parent and each family unit is unique as well. There are also social and cultural differences to consider.

So what should a parent of a child with a serious illness do?

Although every child and every family is different there are some general rules that can help to guide you.

Let the child's needs and desires lead the way
Obviously, there is a difference between a six year old child and a sixteen year old teen, both in maturity and comprehension abilities. That said, the child's desire or need for information should be the predominant factor in what to tell them and how much to involve them in the decision making process.

 

Get professional help

Aside from the medical health team treating your child, you might want to consider getting other professional help. There are counselors with experience about how to tell children (of all different ages) about their diagnosis and what is going to happen next. In addition, these professionals can also offer practical advice as far as coping mechanisms both for the parent as well as the child. Depending on the situation, you might also want to consider receiving legal counsel.

 

Don't lie

Once trust is broken, it's very hard to regain. A child who trusts his parents and knows they haven't lied to him until now will be more likely to cooperate in the future. Do not knowingly lie to your child, not about the diagnosis and not about treatments. You can say I don't know or I am not sure.

In this day and age, children have access to the internet as well as other forms of media. If they have to go searching for their answers they may or may not be getting their information from reliable sources. If they trust you, they will trust the information you provide them.

 

Don't keep secrets

Children are smart. They know a lot more than we think they do. A 2009 study by Adi Niv-Yagoda showed that the majority of teens were aware of their medical condition even when their parents and staff tried to hide it from them.

 

Keeping secrets has two detrimental effects. Firstly, it undermines trust between the child and his parents. Secondly, keeping secrets, especially within a family unit, requires a lot of energy, causes a lot of stress and intensifies the feeling of loneliness. Secrets steal important resources from both the parents and child at a time when they could be used to cope together.

 

Let the child know they can ask questions

If they think their parent will break down in tears if they ask certain questions, they might very well avoid asking questions. Let the child know that questions are okay.


Having a child with a serious illness is something every parent hopes they will never face. Aside from the parent's own worries or fears, there are also decisions to be made and the child's worries and fears to address and attend to.

 

Whether or not a child should be informed and involved in medical decisions depends on many different factors such as age, mental capacity, decision making capabilities, maturity and the child's desire to participate. Even so, every child has the right to be respected and when possible be informed to their individual ability levels.

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