You wanted it. You’ve been pestering me about it for days now. So now you’ve got it. You might be surprised at what I say about it though.
I realize that I’ve written time and time again about children with cancer who refuse chemotherapy in favor of quackery. It’s been one of the recurring story types that I’ve blogged about because, depressingly, such stories are not uncommon. It began with Katie Wernecke and Abraham Cherrix several years ago, the latter of whom is still around but was continuing to battle recurrences of his Hodgkin’s lymphoma when last we revisited his case nearly two years ago in wake of seeing his GoFundMe page. These were followed by children like Daniel Hauser, a then 13-year-old boy who refused chemotherapy for his Hodgkin’s lymphoma; Daniel Hauser, a 13-year-old boy who also had Hodgkin’s lymphoma and refused chemotherapy, but was ultimately required to undergo treatment and did well; Jacob Stieler, a 10-year-old boy with Ewing sarcoma who refused chemotherapy; and Sarah Hershberger, a 10-year-old Amish girl with lymphoblastic leukemia who refused to complete her chemotherapy after less than two full courses and whose family ultimately got their way, with Hershberger coming home to die. The two most recent cases I’ve discussed include an 11-year-old First Nations girl in Canada who refused effective treatment for her cancer in favor of “traditional medicine,” leading to a court case in which aboriginal rights trumped the right of a child to live. Unfortunately, that “traditional medicine” was nothing of the sort, but rather a Florida quack named Brian Clement. Her case is similar to that of Makayla Sault, another aboriginal girl about the same age who also has been relying on Brian Clement and is in the process of dying because of it.
Now there’s a 17-year-old girl in Connecticut with Hodgkin’s lymphoma who is referred to in the court papers only as Cassandra C, although her identity is easily found from a Google search that pulls up a story about her when she ran away. This is the case you’ve been sending me stories about, and I had assiduously been avoiding blogging about it for reasons I’ll discuss later. Finally, I decided to change my mind because Cassandra had a court hearing yesterday, and, surprisingly (at least to me) the judge ruled that she must continue chemotherapy:
The Connecticut Supreme Court ruled Thursday that the state may continue to force a teenager to undergo chemotherapy treatments that could save her life.
The court said that attorneys for the girl — who is 17 and therefore still a minor — failed to prove that she is mature enough to make her own medical decisions.
The teen, identified in court documents as “Cassandra C,” was diagnosed with Hodgkin’s lymphoma in September. Medical experts have testified that Cassandra has an 85% chance of survival if treated with chemotherapy. Without it, doctors say, she likely will die within two years.
I’ve been doing a crash course on this story, trying to figure out the time course. It’s actually fairly simple. She was diagnosed with Hodgkin’s lymphoma in September. The recommended treatment, of course, includes chemotherapy. Here’s where her story is different. In virtually all of the stories about children and kids in their early teens, the child has undergone at least some chemotherapy before either asking it to be stopped (and having the parent accede to her wishes) or the parent decides to stop it. In virtually every case I’ve studied, the reason why parents either stop or accede to the child’s wishes to stop the chemotherapy boils down to two reasons: First, the child is having trouble dealing with the side effects of chemotherapy and says she can’t take it any more. Understandably, the parents hate seeing their child suffer and are amenable to agree to stop the chemotherapy in order to stop their child’s suffering. If there’s a tendency towards woo (or, in Cherrix’s case, extreme wishful thinking that, even if he were to die of cancer he would “die healthy”), the blandishments of quacks who claim they can cure the cancer without all the toxic side effects of chemotherapy become very tempting indeed, particularly problems with fertility and secondary malignancies. Of course, if a child doesn’t survive her tumor and never reaches adulthood, fertility will never be an issue, nor will secondary malignancies, which often take decades to appear.
The second reason, which feeds into the first reason, is a misunderstanding of chemotherapy for cancer. After one or two courses of chemotherapy, parents often learn that there is now no detectable tumor, leading them to ask why so much more chemotherapy is required, courses of chemotherapy that can, in their totality with breaks between, add up to two years or more in some cases. I’ve explained this before on multiple occasions (e.g., here in the case of Sarah Hershberger), but for childhood malignancies, particularly hematologic malignancies, pediatric oncologists have learned through long, painful experience and clinical trials that, even if the cancer appears to be gone, its chances of recurring go up markedly, such that after only one or two courses of chemotherapy the chance of recurrence is very high. Unfortunately, when cancers recur after incomplete chemotherapy, they tend to come back in a resistant form that’s harder to eradicate, leading to a much higher chance of death even if treatment is reinstated after recurrence. One way to look at is is that the best chance to cure a cancer like this is the first chance. You need to do it right the first time if you want to maximize chances of cure, and failing to do so can have deadly consequences. The stories of these children who refuse chemotherapy all basically boil down to a misunderstanding of cancer biology coupled with a very understandable distress at seeing one’s child suffer.
The difference between Cassandra’s case and these other cases, interestingly, is that, from what I can tell, she refused chemotherapy before having received a single dose. Even odder, her mother backed up her decision. This is very unusual, in my experience, which, fortunately, is limited to small numbers. In any case, in November, the Connecticut Department of Children and Families (DCF) petitioned the court for temporary custody and ordered the mother to cooperate with her daughter’s medical care. The court ruled in DCF’s favor, and Cassandra underwent two doses of chemotherapy. Then Cassandra ran away from home on November 18 and was missing for a week. She ultimately returned but then completely refused any further chemotherapy. There was another hearing on December 9, and the trial court ordered that Cassandra be removed from her home and remain in DCF’s care and custody. The court also authorized DCF to make all medical decisions on Cassandra’s behalf. So Cassandra and her mother appealed, and yesterday that appeal was heard.
In the meantime, right after that December hearing:
The following day she was admitted to Connecticut Children’s Medical Center in Hartford.
A week later, doctors surgically implanted a port in Cassandra’s chest to administer chemotherapy medications. The next day, December 18, doctors started her daily chemo treatments, which are still ongoing in spite of legal maneuvers to end them.
After the court’s ruling Thursday, Fortin told reporters “she should be home with me, her family, her friends, going through a horrible thing with all this and she’s not, she’s been taken away.”
Fortin who was in court alongside her attorney Michael Taylor, also said “this is (my daughter’s) decision, not mine and she’s not making a decision to die.”
Except that, whether she admits it or not, she is. She even gave an interview saying that she is:
Cassandra told The Associated Press in an exclusive text interview from her hospital it disgusts her to have “such toxic harmful drugs” in her body and she’d like to explore alternative treatments. She said she understands “death is the outcome of refusing chemo” but believes in “the quality of my life, not the quantity.”
“Being forced into the surgery and chemo has traumatized me,” Cassandra wrote. “I do believe I am mature enough to make the decision to refuse the chemo, but it shouldn’t be about maturity, it should be a given human right to decide what you want and don’t want for your own body.”
The court ruled Cassandra’s lawyers had the opportunity to prove she’s mature enough to make that decision during a Juvenile Court hearing in December and failed to do so.
Well, there are the alternative treatments. Reading earlier stories about Cassandra, I was struck by the lack of mention of her pursuing alternative cancer cures, but I knew that that was almost certainly a major motivation. It had to be. Young people newly diagnosed with cancer don’t want to die in general; that is, unless they have significant enough depression to make them suicidal. There had to be the fantasy that there are natural cures out there. Had to be.
Meanwhile, Cassandra’s mother has not been shy about speaking out to the press:
Mother Jackie Fortin agrees it’s Cassandra’s choice to refuse to treat her cancer with chemotherapy. It’s a choice she would have if she were 18 years old and legally an adult.
“She does not want the toxins. She does not want people telling her what to do with her body and how to treat it,” Fortin said — even if there’s a good chance those toxins might be killing the cancer.
“They are also killing her body. They are killing her organs. They’re killing her insides. It’s not even a matter of dying. She’s not going to die,” Fortin said.
Ultimately, she will have to take some step to fight the deadly disease.
“She will, but she should have the choice herself,” Fortin said.
I’m not a lawyer, but I do understand that Cassandra and her mother appealed based on the “mature minor” doctrine, which exists in many states including Connecticut, that allows minors deemed to be mature enough to make their own medical decisions, even if they conflict with their parents or, in this case, with the court. A good explanation of these issues can be found in this article, which explains that Cassandra and her mother’s case rested on three arguments:
- Their constitutional rights were violated when Connecticut overrode their demands to cease treatment.
- Cassandra and her mother also want Connecticut to acknowledge the mature minor doctrine, meaning that the court must decide if Cassandra is mature enough to make her own decisions before forcing her to receive medical care against her will.
- Common law in Connecticut says a patient can’t be forced to receive care over knowing and informed objection.
You can get a flavor of Jackie Fortin’s arguments (her mother) here:
The state countered that when all the medical experts agree that chemotherapy is needed to save the life of a minor, then the state has an obligation to step in and make sure that it is administered, just as it has an obligation to step in to stop abuse or neglect. In the end, the court sided with the state, noting a pattern of not going to treatment and bad faith, with promises to see doctors and seek second opinions made, but Cassandra nonetheless missing multiple doctor’s appointments. Also, the fact that Cassandra had run away after having promised under oath to be treated was taken as evidence of immaturity. (This latter one puzzled me; you don’t have to be immature to lie and plot, promising to do one thing and then doing another. Adults do this all the time.) The court also noted that Cassandra was very deferential to her mother and rarely spoke up for herself, in essence letting her mother do all the talking.
Regular readers know that I invariably come down—and come down very strongly—on the side of making cure that children in these situations obtain treatment. I take a back seat to no one in terms of being a fierce advocate of making sure that minors with cancer get the best chance of living to be happy, healthy adults, regardless of what their woo-prone parents or even they themselves want. Regular readers should also know that I’ve always said that competent adults should be able to choose whatever treatment they want or no treatment at all, even if it will result in their death. That’s why I’m very much torn about this case. The reason is simple. Cassandra is 17 and will be 18 in September. She is very close to being an adult legally. I have no problem—and never have had a problem—accepting that children are too immature to make such momentous decisions and that parents who refuse to treat children with cancer with appropriate therapy are guilty of medical neglect. Such certainty is easy for 10, 11, 12, 13, and even 14 year olds. Heck it’s easy for 15 and even 16 year olds. But as a child hits 17 and gets closer to being a legal adult, it becomes harder for me to be quite so certain.
Then there are practical matters. Let’s go back to a post I wrote about Daniel Hauser nearly six years ago:
While it may be possible to physically restrain a child like Daniel in order to place permanent intravenous access and then, every so often, to give him chemotherapy, it would be very difficult, and there would be nothing to stop him from trying to rip the intravenous access out to prevent further doses, potentially hurting himself, unless he were kept under constant surveillance. In other words, he would in essence need to be imprisoned for therapy.
This is basically what has happened to Cassandra. She is locked away in a hospital and is not allowed to see her mother more than once a week, and then only under supervision. DCF took away her cell phone, and the hospital removed her room’s land line. As far as we know, she hasn’t started trying to rip needles out of her chemotherapy port or attempting to escape, but she very easily could in the wake of this decision. This is not the same thing as forcing a toddler or even an older child to undergo treatment against her will.
Then there’s the issue of radiation therapy, which requires the cooperation of the patient, who must lie still on the table and do so every day for 30-40 days, depending on the radiation therapy regimen. Although I don’t know enough about Cassandra’s case to make a confident pronouncement, I do know that Hodgkin’s lymphoma frequently requires radiation therapy. What if Cassandra won’t cooperate for the radiation? If she does that, she will risk having the radiation beam hit places that it’s not aimed at; i.e., miss the tumor and hit normal tissue. Sure, she could be sedated for each session, but there’s nothing good about sedating a someone five days a week for six weeks or so. As I pointed out in my post about Daniel Hauser, oncologists have a real problem doing this, and for good reason. Remember, when Daniel Hauser was 13 years old at the time. Cassandra is 17.
As I put it at the time regarding Daniel Hauser:
I hope for #1 [making the family see reason], but if push came to shove, I might reluctantly accept option #2 [forcing Daniel to undergo chemotherapy] if it would save the life of a child…But let no one be under any illusion just how horrible option #2 would be. Let those who blithely and ignorantly pontificate that the court should force Daniel to undergo treatment understand just what that involves. It’s not at all pretty and it may harm Daniel. I say I would probably reluctantly accept such an unpleasant option in order to save Daniel’s life as the lesser of evils, but I understand what that choice entails…
Even though Cassandra is, as far as we know, being cooperative, she’s still locked away in a hospital room, not allowed to leave and not allowed to see her mother except occasionally and under supervision. That might not be as bad as the worst case scenario I described so long ago for another patient, but it’s still pretty bad.
It’s for these reasons that, although I almost always agree with him on most matters, I find bioethicist Art Caplan’s certain, dogmatic insistence that the state is doing the right thing and that Cassandra should receive chemotherapy against her will troubling in this case. Forcing Cassandra to undergo chemotherapy might be the right thing to do, even though she is 17 and nearly an adult, but I just can’t be as sure of it as Caplan is. Given my history reporting cases like this, that should tell you something. In fact, I find Caplan’s prescription quite naive:
Let her meet others her age who have been through chemo and lived. Find her a doc, social worker or counselor with whom she can bond and trust, who can guide her through the torment of chemo. Bring her mom around and get her to help her daughter through the treatment.
Gee, why didn’t I think of that before?
Seriously, though. Caplan writes as though he genuinely thinks that the Cassandra’s oncologists and nurses hadn’t thought of that before! He sure isn’t giving the team taking care of Cassandra much credit. As a cancer doctor, I’m rather insulted that Caplan would think so little of the team taking care of Cassandra. I’ve pointed out before that nearly all hospitals with a pediatric oncology program have a veritable army of social workers and counsellors who are there to help children and their families endure chemotherapy, sometimes for years. Sadly, sometimes even their best efforts aren’t enough, and we have cases like Cassandra.
Read more about Another teen refusing chemotherapy, another court ruling [Respectful Insolence]