I am a little behind with this story, as it appeared in the news a few months ago. But still, I think it is worth posting about now, because this subject has come up before, and will come up again. And again, and again.
This is a really important story, and one which hopefully will set a precedent. Who owns a body? Who makes the final decision on care? Who who who???
The right to select the treatment of choice is as important as the right to refuse treatment. But while it is fairly well established that an adult in his or her right state of mind is free to make decisions regarding their healthcare (providing that the FDA doesn’t interfere), it is a hazy murky web when it comes to a minor.
Yes, we all have heard the stories of Jehovah’s Witnesses trying to deny their infants blood transfusions, and Christian Scientists allowing children to die from an easily treatable infection. Those are the horror stories, and the cases are a little more clear-cut. We used to routinely transfuse JW infants in the NICU if they needed blood, and in all cases except one, the parents were okay with it. Even relieved, I think, that the decision had been pulled from their hands.
But even so, there is the issue of power of parent vs. power of the state. Does the state have the right to force unwanted treatment onto a child? In some cases, local governments have threatened to have children removed the home if the parents refused to put their kid on Ritalin. I kid you not. I regard that as a blatant abuse of government power. Attention deficit disorder is a subjective diagnosis, and certainly not life threatening. It’s nothing that should involve any government interference, except that the local school doesn’t want to have to deal with the child, so they get the government involved and order him drugged.
Obviously, a baby or very young child isn’t going to make medical decisions—although, in the recent separation of the Utah conjoined twins, the twins were interviewed by a psychologist. Since the twins were already four years old, the separation surgery was more dangerous from both a physical and psychological standpoint. But the twins clearly said that they saw themselves in the future as two separate people, and their input heavily figured into the scheme of things.
But what about a teenager? What about a mature 16 year old who understands his illness, understands the treatment, and decides to say no, with the blessing of his family? Does the physician and social services have any right to interfere?
Apparently, some think that they do.
From abc news.com:
A 16-year-old cancer patient ’s legal fight ended in victory Wednesday when his family’s attorneys and social services officials reached an agreement that would allow him to forgo chemotherapy.
At the start of what was scheduled to be a two-day hearing, Accomack County Circuit Judge Glen A. Tyler announced that both sides had reached a consent decree, which Tyler approved.
Under the decree, Starchild Abraham Cherrix, who is battling Hodgkin’s disease, will be treated by an oncologist of his choice who is board-certified in radiation therapy and interested in alternative treatments. The family must provide the court updates on Abraham’s treatment and condition every three months until he’s cured or turns 18.
Tyler emphasized that the decree states that the parents weren’t medically neglectful.
Abraham saw the doctor last week, and defense attorneys told the judge that the doctor has indicated that he thinks that Abraham can be cured.
After the short hearing, the judge looked at Abraham and said, “God bless you, Mr. Cherrix.”
Last summer, the teen was diagnosed with Hodgkin’s disease, a cancer of the lymphatic system considered very treatable in its early stages. He was so debilitated by three months of chemotherapy that he declined a second, more intensive round that doctors recommended early this year.
There is a rather disgusting backstory to this case. This is from the website called Abraham’s Journey, which explains what exactly happened.
In late August of 2005, fifteen year old Abraham Cherrix received the devastating news that he had a form of cancer known as Hodgkin’s disease. During the next few months Abraham faithfully pursued conventional chemotherapy through its recommended cycle. However, in February of 2006 he learned that chemotherapy had not cured the disease.
Doctors then recommended a higher dosage of chemotherapy combined with radiation and culminating in stem cell treatment, offering Abraham less than a 50% chance of survival under this treatment. This time the Cherrix family did their own research, contacted many other cancer victims and survivors, prayed, and discussed all their options. After reflecting on the brutal side-effects of the previously ineffective treatment and the hope offered by in a natural remedy, Abraham and his family chose to pursue alternative treatment in Mexico. A legal battle has ensued.
The Cherrix family has placed life on hold to pursue treatment for their son. Since early May, the family has been involved in continuous litigation with the Department of Social Services to continue their desired course of treatment. In the Juvenile and Domestic Court, the parents faced charges of neglect, loss of custody of their son, and orders to submit to the recommended cycle of higher dosage chemotherapy and radiation by Tuesday, July 25, 2006.
The website has a number of news stories linked to it, but the bottom line is that the court “ordered” Abraham to the hospital to undergo chemo and radiation. Abraham steadfastly refused. This is a mature 16 year old who has already been there and done that, and no thanks, he was not going there again. The conventional therapy put him into a brief remission after nearly killing him, and he wanted to try something else.
At the witching hour, a judge rescinded the order, and said that Abraham did not have to show up for his chemo and radiation. I guess the new judge had a bit of a brain, and realized that this would be a public relations nightmare of elephant sized proportions. The only way they would get Abraham to the hospital would be to drag the kid at gunpoint. And then they would have to either sedate him or strap him down to the bed into order to get him to submit to treatment. This would give new meaning to the term government interference.
But I wonder, what would the nurses have done? Would any nurse, in good conscious, agree to participate in the treatment of this teen–who is obviously mature and old enough to make up his own mind–and who was forcibly brought to the hospital? Or would there be the usual martyr types who think that they should do what they can for the “good of the patient,” even if its infusing toxic substances into his veins against his will? I’m glad the scenario didn’t reach that point, but it would have been interesting to see how nurses responded to such a situation.
Another part of the story is the involvement of social services. Yes, social workers can play an important role, but there have been way too many cases where vulnerable people have slipped through their fingers. I know, too heavy a caseload, poor funding, but as in the case of Abraham–wasting valuable time and resources on people who neither required or wanted their “help.”
Abraham’s family opted to refuse the standard treatment offered by his doctors and pursue an alternative herbal treatment in Mexico. The family said it was the doctor at the local children’s hospital brought the case to the attention of social services, and it was a social worker who asked the courts to step in and force Abraham to resume chemotherapy.
Now, don’t the social workers have “real” cases to worry about? Maybe they might concentrate on cases of children being abuse, assaulted, falling through the cracks, and so on, instead of trying to play God. I’m sure that there are enough families in dire need who could use their help, but yet they chose to inflict untol grief on this one family, to say nothing of the legal expenses.
If I was this family, I would sue both the doctor and the social services department for expenses incurred. According to the website, the family is in dire straits and their house was foreclosed.
The bright side is that in March 2007, Abraham’s Law was passed in the state of Virginia, where he was living at the time this incident occurred.
The measure specifies that a decision by parents or a legal guardian to refuse a particular medical treatment for a child with a life-threatening condition will not be deemed a refusal to provide necessary care if the decision is made jointly by the parents and the child, the child has reached the age of 14 and is sufficiently mature to have an informed opinion on the subject of his medical treatment, the parents and the child have considered alternative treatment options, and the parents and the child believe in good faith that the decision is in the child’s best interest.