When I was ten, my parents sat me down on the edge of their bed and told me I had to go back to the hospital. I had already been to two in the Boston area; one of which I had defiantly walked out of after the radiology nurse, unable to find my vein, had made a black and blue mess of my arm. But I wasn’t going there; I was going to the other one, Boston Children’s Hospital.
My parents never used the words “sick” or “cancer” or the even scarier terms like “neuroblastoma” and “stage four” in that first conversation. My only question was: Would I have to stay overnight? Our discussion was short and simple. But was it enough? Would explaining the situation to me — really explaining it — have done any good? Or would it, maybe, have done more harm? Did I, at ten years old, have the maturity to understand what was truly happening to me, or what was really at stake?
I don’t know. But fourteen years later, I’ve done a lot of thinking about it.
I know that my parents did the best they could to explain things and to include me in the medical decisions that they felt I could handle. I also know that it was always hard. Recently, I spoke to Dr. Steven Joffe, a pediatric oncologist at Dana Farber/Children’s Hospital Boston and chair of the Children’s Oncology Group Bioethics Committee, about how involved children should be in there own medical care. Dr. Joffee was also my primary oncologist as a kid and I still see him for check ups every year or so.
“A lot of parents…their first instinct is to protect their kids,” says Joffe. “So my sense is that many parents find it very difficult to engage their kid in the medical decision making.”
Among children, there are two age groups with the highest incidences of cancer, according to the CDC: those ages 1 to 4 and 15 to 19. Clearly, toddlers are incapable of true medical decision-making. For them, “it’s an issue of explaining but not so much an issue of deciding,” Joffe says.
The opposite is true for older children.
It’s those “medium kids,” he says, around ages 9 to 15, who are likely capable of making tough medical decisions for themselves. But it can get quite complicated.
It’s well known that a lot of decision-making capabilities are just starting to develop in kids as they enter the teenage years. The ability to weigh different options against each other and to understand the consequences, both short and long-term, are concepts that older kids and young teenagers are just beginning to grasp. It’s also a time of changing family dynamics, where families vary the most in how they engage with their kids on a range of issues, including medical but also, all manner of other fraught topics, says Joffe.
The most important factor in medical decision-making is maturity. The middle years “are the times when kids develop most differently. You might have two kids of the same age, one of whom is just much more mature than the other,” Joffe explains. But maturity is about much more than just age. Even in children, life experience plays a huge role.
I was a “medium kid” when I began aggressive treatment for my illness, but my level of involvement was closer to that of a little kid’s.
There was a lot of explaining that bad things were going to happen, but I had no say in the decision to let those bad things happen or how and when they would happen. As treatment progressed, and I started to understand the situation and interpret some of the things that were being left unsaid, I began to make my voice heard. At first, it was about small things. I wanted to watch “I Love Lucy” during radiation treatment, not “Beauty and the Beast.” I wanted to work with a certain nurse and not with others.
Eventually, I started making requests that affected my care. During surgery, metal pins were placed in my abdomen so that radiation could be focused on the right spots later on. After surgery, they told me they had to permanently mark the corresponding location of those pins on my skin, like a tattoo, so the doctors could find them. I told them no. I wailed that they had promised me no pain that day. They would have to do better. And they did. Sharpie markers, it turns out, are just as effective as ink in the short term, and virtually pain free.
And by the time my year of treatment was over I had aged at least ten, which apparently, is not uncommon. Joffee said the gravity of enduring treatment often matures a kid far beyond his or her biological age.
Still, parents might deem some information too much for their child to handle, for instance, a recurrence of cancer that is incurable. “It’s not an easy thing to say to your kid, or listen to a doctor tell your kid,” Joffee says. “But can a kid really contribute to an informed decision when they don’t know something that fundamental, if they’re making decisions under false assumptions?”
It’s situations like these, where the choice between continuing treatment or opting for palliative care must be made, that Joffe thinks engaging the child is most crucial. “Very often, I think parents feel they cannot stop doing the things that allow them to keep open the hope for a cure. The problem is those things are done…to their kid, not to them, and so the question comes up: How do you make sure that what you’re doing is at least not contrary to what the kid wants, how do you make sure that the kid gets a voice?”
So, in the midst of the trauma and incredible difficulty of a serious illness, how do you ensure that your child has a voice? Both the family and the medical team must make an effort to keep the child, not the parents, at the center of the discussion. Joffe admits that this isn’t easy to do, but one example has stuck with him:
I remember being in clinic with one of my attendings who was a pediatric rheumatologist. She had just diagnosed a kid who was maybe 7 or 8, quite young, with Lupus. It was the clinic visit where they were disclosing the diagnosis, so that’s a pretty heavy conversation. Instead of speaking to the mom and letting the kid listen, she spoke to the kid in kid appropriate language and let the mom listen. It was really cool, and a good example of how to let that kid know that this was about her, that she wasn’t a bystander to her own illness.
Can this kind of approach reduce some of the trauma associated with a critical childhood illness? I think so. I’ll never forget the doctors and nurses who engaged with me that way.
It’s easy to sideline the child in the medical decision-making process, but it’s incredibly hard on a child to feel that they’re systematically not heard. That, at least, is loud and clear. Looking back, I realize that I was rarely involved in making decisions for my care, and when I forced any change it was always in the form of requests, not collaborative decision-making. But I’ll never forget the doctors that did engage me in the decisions or the nurses that gave me options. I’ll never forget the first time a doctor told me I had a choice to let them examine me or not.
Lindsey Kempton, 24, is the the Associate Editor for MTV VOICES, MTV’s digital magazine focused on youth activism and social responsibility. She lives in New York.