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HOW INVOLVED SHOULD CHILDREN BE IN THEIR MEDICAL CARE?

By Kayla Giacin
Wednesday, July 11, 2012

When a child is diagnosed with a brain tumor, the line between how much say they should have in their medical care and how much should be left up to the adults in their lives can be very blurry.

This was the subject of a recent article posted by Common Health, written by Lindsey Kempton who was treated for cancer as a child.  She discussed this topic by explaining how her parents discussed her cancer and treatment with her and how she felt the rapid maturity that a young person with cancer faces might enable them to make more informed decisions regarding their medical care.

CBTF asked some of our survivors to weigh in on this topic and the general consensus was that a child should be as involved in their treatment as possible given their age at the time of diagnosis.

Young adult survivor Jordan said that, “…the illness is happening to the kid, not the parents therefore the kid needs to be as involved as possible. It is harder when the child is younger, but it can be done…I can understand a parent's need to ‘protect’ their child, but giving them no say whatsoever will ultimately inflict more trauma in the long run.”

Survivor Amanda agreed with Jordan and said that she found it helpful when her parents explained everything to her the best that they could.  They answered all of her questions and she thought this was important because it is the child who is physically going through all of the medical treatments.

Through personal experience and well as my experience in talking with other survivors, I think that underlying issue is not even making the ultimate major medical decision but the loss of control that is felt by a patient.  This loss of control is not only felt with specific medical issues but in all areas of life.  A child might feel as if they had many important milestones in their childhood taken away from them and lost the control of the direction their life could have taken if it had not been for having a brain tumor.   

As Lindsey continued her article, she talked about how scary it was being in the hospital but as time went on she was given more decisions about her medical care.  At first, it was a simple choice such as what TV show she wanted to watch in the hospital.  She was given more and more adult decisions to make and used the example of her being told that she would have to have tattoos made on her abdomen to mark where she would have radiation.  She protested and it ended up that she was able to have the same procedure done using sharpie pens.

After taking all of this into consideration, my general feeling is that while a life or death decision might not be the best in the hands of a child, a child does mature immensely after having been diagnosed with a life-threatening illness.  They are very capable of comprehending a lot of what they’re going through and therefore making decisions related to that.  Perhaps for a young child this comes in the form of explaining things in an understandable yet thorough way that gets them to understand their illness and treatments so that when they’re old enough to make more sound decisions, they can make them with a knowledge of their implications. A child can be told about the medications or treatments they are receiving as well as the side-effects that might result.  As scary as it might seem for a child to be told of side-effects, imagine how scary it would feel to wonder why your body is changing or why you are feeling a certain way without having any prior knowledge that it might happen.  Perhaps the child can decide whether he or she wants to take one medication or another depending on side-effects and effectiveness or perhaps they can decide on a way a specific treatment or drug can be administered.  It can speak volumes for a child to be able to make their own decisions regarding their care. 

It’s undoubtedly a frightening experience to witness a child going through a severe medical trauma and the instinct of an adult is to protect them but when he or she is given more say in what happens to their body, this can help with the emotional healing that needs to take place after having had a brain tumor.

For Lindsey Kempton’s full article, go to:

http://commonhealth.wbur.org/2012/06/when-small-children-face-big-medica...

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