An 11-year-old Hamilton boy forced to undergo chemotherapy may be at home, but the controversy over his care will surely not end there.
The boy's father reports that the boy's spirit is broken by the experience, willing to do anything if it means he can go home.
"We told him, 'Don't worry buddy, please try to be healthy, relax, relax, relax, relax,' and he even said to me, 'I don't care. They can even kill me with their chemo and stuff I don't care, as long as I can come home and be home with you and mommy," the man recalled. "You know what that feels like to hear your son say that?"
The judge sympathized, saying, "The bottom line is this is still a child, a child who has rights, who has feelings, who has vulnerabilities," Superior Court Justice Alex Pazaratz said. "It occurs to me this child is going through so much."
The rest of us can only imagine. There isn't a parent out there who hasn't wondered what they would do if faced with a pleading child who does not want to undergo chemo. And it's not just children -- many have confronted similar issues with aging parents and siblings.
At issue is the boy's initial refusal of chemotherapy, which he has had before, and his family's willingness to go along with his wishes. The hospital disagreed, so called in the local Children's Aid Society to take custody of the boy to ensure he got the chemo. The boy, who has fetal alcohol syndrome, was deemed unable to make an informed decision. The parents were deemed to not be acting in his best interests. The two sides squared off in court, with the parents being given custody again if they agree to continue the chemo. The boy is now willing to go along, so long as he can go home.
The case reminds me of a conversation I had with a bioethicist at another hospital two years ago. Children, especially those with long-term health problems such as cancer, are often engaged in the decision-making process about their care. When they are young, the decisions don't matter -- such as which arm will an IV be put in. As they get older, and they are mature enough, they get to help decide more important things -- even whether to accept treatment.
But that doesn't generally happen until the teen years, at the earliest. This boy is 11 and attends special education classes, so is presumed to have a diminished mental capacity.
At least one ethicist, Brendan Leier with the University of Alberta and Edmonton's Stollery Children's Hospital, has pointed out, however, that whatever the boy's mental capacity, having been through chemo before, he knows exactly what he is refusing.
"He understands what it feels like to have chemo, he understands what it is to go through that and have all the ill-health effects and it's very difficult to argue that anymore intellectual capacity would enhance his judgment."
I have never been through chemo myself, but I have seen its impact on others all too often.
Anyone who has witnessed it can surely understand the boy's reluctance to go through it again, and his family's qualms about forcing it on him. Those of us who have seen cancer in own families know -- and few who have not been touched by cancer -- patients and their families often feel they have lost control of their lives.
It is perhaps a natural response, then, for patients to try grasping control again anywhere they can. This family, while going along with the chemo, also says it will be exploring alternative treatments, as well.
And taking some control.
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