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Another teen refusing chemotherapy, another court ruling

refusechemo

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:


More ABC News Videos | ABC World News

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.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

194 replies on “Another teen refusing chemotherapy, another court ruling”

It’s a difficult situation, where the ethical and legal waters are definitely muddied.

The State does have the obligation to protect her health, even against her wishes, because she’s not a legal adult yet. If she had gone along in good faith with her earlier agreements with the State, they probably would have ruled in her favor for the mature minor clause.

As it stands, my opinion (and your mileage may vary) – she ends up with chemo until she turns 18, then she can choose to stop it and die from her cancer in the manner she wants to.

I had wondered where you would come down on this for reasons you mentioned. Sadly, slippery slope type things beg the question – when does the state stop mandating treatment for minors?

The most frustrating thing in this is that woo gets to make unsubstantiated claims about its efficacy and science-based medicine does not get the same luxury. It glorifies “nature” while ignoring the fact that natural things are, by nature, “chemical.”

It sounds like the family has been strongly biased against medical intervention like chemo.

I think a lot of people are conflicted about this for the exact same reason- this girl in months away from being 18. But arbitrary lines have to be drawn somewhere. She cannot vote, for example and would not be able to vote by claiming that she is almost 18. She won’t be able to drink at 20.5 years-old. So I think the state is right to force treatment on her.

If she does not cooperate, however, and endangers herself, then the doctors may feel the risks outweigh the benefits.

This is a tough, sad case. I feel for her and for her team, who is just trying to do the right thing.

Part of it comes down to the idea that life, any life, is better than no life at all. That’s one of those tough ethical questions that is highly context-dependent.

So I think the state is right to force treatment on her.

I think the problem is that a lot of people don’t realize how ethically problematic forcing treatment on an adult or near-adult is for physicians and nurses. If Cassandra were my patient, I would have a very hard time being party to imprisoning her in the hospital (and, make no mistake, that is exactly what the State of Connecticut has done), keeping her more or less incommunicado, and forcing her to undergo treatment, even though I know it’s the one thing that will save her life. I might ultimately decide to do it, but it’s not cut and dried certainly nowhere near as cut and dried as Caplan makes it out to be.

There’s no question that this is saving her life. But at the same time I don’t think this is even remotely a close call morally, ethically, or legally. Performing medical procedures, including surgery, on a sane non-consenting 17 year old woman is unethical, and would not be tolerated in other contexts. In my opinion, of course.

I have some sense how “ethically problematic forcing treatment on an adult or near-adult is for physicians and nurses.” I have been involved in such cases before, though nothing of this magnitude.

There is no easy answer here. Either you imprison a child against her will and force treatment on her. Or you let her die, assuming she does not change her mind. I never meant to imply the ethics behind it were cut and dry, but ultimately a decision has to be made, yes or no. You have not said what you would do- that is fine- maybe you are unsure. I am unsure, which is why I feel for the team involved in her care.

As I said, arbitrary lines are drawn all the time in life. Perhaps there should be some procedure in the future where children her age take a “competency test” of sorts to see if they can refuse treatment. This is done with adults who refuse treatments, but may be psychotic or demented. Hopefully our system can learn so there are procedures in place when this happens again.

While the decision might ultimately prove to be correct, the actions taken to enforce the decision do seem to be morally wrong and may ultimately lead to this girl’s death – meaning that once she turns 18, she’ll run as far away from conventional treatment as possible – and I would be hard-pressed to blame her.

Part of the problem I have with this, if the reports are correct, is how she is being treated. It’s one thing to force treatment on her (questionable in itself for the reasons Orac listed), but quite another to take away her other rights and make her stay at the hospital uncomfortable on top of what I can imagine is an already uncomfortable treatment.

We don’t know, nor does Art Caplan know, Cassandra’s social history. There were veiled hints about her lack of “maturity” made during the arguments before the Connecticut Supreme Court (I listened to part of the live stream yesterday).

The plaintiff’s attorney made a cogent argument that the Connecticut legislature has already enacted laws to permit a child under 18 to secure an abortion and to determine if she wants to donate her body (organs/tissues?) after death.

The judges, were quite specific that the Connecticut legislature has NOT enacted laws for a child under eighteen to make a decision about medical treatments…indicating to me that they were reluctant to set a precedent in their courtroom.

If Cassandra started on the 6-month regimen last summer she would have been 16 years old (her birthday is September) and she would have been just about finished with the 6-month chemotherapy regimen.

(From one of Orac’s links)

“….Jackie Fortin, who brought up Cassandra on her own following a divorce, failed to bring her daughter to at least four doctor’s appointments last summer and fall —two months before a noticeable lump in the teen’s neck finally was diagnosed as cancer, court records show….”

Was there ever a formal psychological assessment of Cassandra’s level of maturity? If not, that is an inexcusable lapse. I read some of the court documents. All I saw were a couple of doctors and others expressing concern about Cassandra’s level of maturity based solely on her remaining quiet and letting her mother speak for her most of the time.

MarkN, as I understand it, the court hearing was to determine if Cassandra had the ability to give informed consent, as we do recognize that some people are too immature to do so. (The extreme case would be a young child, who lacks the maturity to evaluate ‘the doctors think this will help me because XYZ, but it will be uncomfortable in the short term’.)

As others have said, cases close to whatever line we draw will be a pain, because one doesn’t gain maturity as a present on your 18th birthday. Neither choice sits well with me: I don’t think many 17 year olds have a real understanding of their mortality, but keeping a resisting high schooler under guard for months at a time sounds exceedingly unpleasant and concerns me.

I’m very reluctant to force medical treatment on anyone who can give informed consent, regardless of age. I also think the state has the duty to protect children who cannot give informed consent when their parents refuse to provide appropriate medical treatement.

That’s why I think these cases do need to be handled on a case-by-case basis and yes, the courts are the only place to do so. If the CT Supreme Court didn’t feel that Cassandra was mature enough to make her own medical decisions based on the evidence provided, then that’s the way it goes. I’m not saying it’s ideal, and I certainly understand the reluctance to force medical care on someone who’s basically an adult. But these cases never have easy answers.

I too have very mixed feelings.
And seriously, many people over 18 make the same poor choices as she has and select woo over SBM.

I would be interested to know if there was any testing or interviews to determine her level of maturity/ intelligence/ mental health and what the results were.

I tried to locate the Fox live stream from the Connecticut Supreme Court, for the portion I listened to yesterday. I have located this CT-N station, which has some of the oral arguments from yesterday’s court hearing:

http://ct-n.com/CTNplayer.asp?livestream=0

I heard a portion where the plaintiff’s attorney and the State’s attorney both brought up the issue of Clarissa’s level of maturity and then one of the judges made references to her lack of maturity, which I may have misinterpreted to mean there were indications of the lack of maturity, in her prior (to her diagnosis), psychosocial history.

It’s a tough call.

It’s definitely a sad and difficult case.

I keep thinking it comes down to ‘do we allow teenagers to kill themselves’? If someone is a suicide risk, is there precedent for restricting their freedom for a pre-specified duration of time for treatment of the underlying case?

She says she understands that death is the outcome of refusing chemo. Does she really understand that?

To me, a big part of the ethical issue here is that Cassandra turns 18 within a few months. IANAL, but since she is being held in the hospital under statutes that apply to minors, I expect the legal basis for holding her will evaporate on her 18th birthday, with the likely consequence that she will not complete the treatment program.

It’s one thing to hold an almost-adult incommunicado in a hospital so that the doctors can complete a life-saving treatment. I can understand why some doctors would be reluctant to do this, but at least the stated procedure in the child’s interest would be completed and have a reasonable chance of saving her life. In Cassandra’s case, the doctors don’t even have that mitigating factor. I fear that she will leave the hospital without having completed chemotherapy and/or radiation therapy, and so will probably die even with the intervention. I don’t think I could do that; I’d want to have a reasonable expectation of saving her life (that may not be a sufficient condition for many people, but I would call it a necessary condition).

As the father of a teen girl, I can say that I would insist on the treatment – even going so far as to hold her down kicking, screaming, clawing my face and biting me so that she could receive the potentially life-saving treatment. However, I am very reluctant to extend that use of force to anyone beyond the parents. The general question is: Should every doctor have the *power* to force treatment upon a child – against the will of the child and her parent? I believe giving every doctor such power brings a very great risk. First, there are already parents who have heard about this case who did not take their child to the doctor today for fear of being overpowered by those who claim that their superior knowledge gives them the right to do whatever they deem best. Secondly, and far more troubling, is the basic and universal psychology of power. The author of this article reasons as an honest, caring, person genuinely seeking the best interest of the child. But we have all learned from life experience that any *power* that exists will be abused by some who seize that power to use for their own purposes. As a parent, I do not at all consider it an unreasonable fear – to consider it possible for some doctor or government official to assign a phony illness to my child so that they can apply a phony cure. You might well say that this case is cut and dried so we should not invoke a fear of misused power here. But, without a line drawn – a limit not to be crossed, we and our children remain vulnerable to abuses of this power. Have we not read of those who have performed sham surgeries for their own profit? Have we not heard of those misogynous ones who inflict pain and suffering on others for their own pleasure. Once the power is given, we can be sure that sometimes such as these will seize it. So, we must consider the balance. On the one hand, without the power to force medical treatment, some children will die. On the other hand, with such a power spread about, others will be victimized. No one can tell weather one will outweigh the other. So, that leaves us with the priniciples of personal freedom and responsibility. I would not give this power to doctors and governments.

The plaintiff’s attorney made a cogent argument that the Connecticut legislature has already enacted laws to permit a child under 18 to secure an abortion and to determine if she wants to donate her body (organs/tissues?) after death.

That being the case then Cassandra has a right to choose her own course of treatment, in my layperson’s opinion of course. It is a truly difficult decision for the treatment providers and the court to do so but (sorry for the expression) sometimes you have to shoot a hostage.

“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. ”

Other than the more general ‘argument from ignorance’, is there a more precise definition of this fallacy? So often AGW denialism and non-scientific beliefs are rooted in these blind assumptions.

For example, a friend of mine rejects AGW because he ‘did some research’ and believes that climate scientists have not included albedo effects in their models. Which of course, they absolutely have. Another example is blaming thimerosal for MMR toxicity.

Where it really gets insiduous is that even if you point out that that isn’t true, people tend to hold to it and simply keep repeating it. Its almost like a mantra, which I am sure is way for them to convince THEMSELVES and keep any cognitive dissonance at bay…

I have no problem with the idea of the state forcing her to undergo these procedures due to her being a minor, for the simple reason that I find legal adulthood at 18 to be rather silly. Cognitive development is still ongoing at 17 and 18 (up to the mid-20s), and late-teenaged people are pretty terrible at decision making. Anyone who’s ever gone out to a local watering hole near a college campus, or the popular local hangout for high schoolers, can attest to first-hand experience with late-teenaged irresponsibility and immaturity. (and the science backs up these anecdotal claims)

@ GregH:

True.
I wouldn’t vouch for cognitive development continuing very far even after the mid-twenties for a significance number of people but no one controls them.
Testing might give us a better idea for the case in question. If it doesn’t show her to be either seriously disturbed, mentally ill or intellectually deficient.. well, it would be her call.

The alt med crowd loves people like Cassandra and her mother, who will literally sacrifice their lives for snake oil.

There is a page called “Kid Against Chemo” that has a whole army of cheerleaders to encourage 17 year old Jared Bucey to treat his own cancer. I don’t have time to find it now, but at one point, he indicated that every day he lived past his prognosis date was a testament to how his alternative methods worked.

It’s such a shame.

Sorry, but this is unacceptable.

I’m all for state interventions on behalf of children and young teenagers, but a 17 year old is going too far.

When my grandfather was 17, he signed up, with his parents’ permission, to serve in the Navy in World War II. He saw combat and was left with a serious case of PTSD. My father also served in the Navy at 17, although he was fortunate enough to do so in peace time.

To complete my above comment, if someone is old enough to risk their lives in the military, they are plenty old enough to make their own medical decisions, however stupid they may be.

She know that she will die for sure if she doesn’t go chemo, but refuse to do it for no rationnal reason. Hell, she is 17 years old ! No 17 years old want to die ! She must be hugely depressed with a totally altered judgement, I see no other possibility (or really, really immature). To me it’s look like the same question as ‘would you help someone willing to suicide ?’ or ‘would you let him die ? because it’s his choice after all’. I believe that no sane adult would let a 17 years old child die for no reason (I don’t believe that she have good reason to suicide, even less at her age living in US), so the court made the good decision. If she stop her treatement at 18 at least someone would have tried to help.

How much good is a treatment ending in September likely to do? Does the 85% survival chance refer to a complete treatment or to one interrupted in about nine months?

I’ll add that, c’mon, most of the people aren’t mature at all even past the 20 (just think about it).

@Quark

Not sure I agree with you. According to the portion Orac quoted in his post, she would prefer to have a short, but quality, life over a longer life with less quality. I can accept that as a reason. I wouldn’t see that as her wanting to die, but rather living the life she has the way she wants it.

She may be ignoring the amount of quality life she would have after the hardship of chemo, perhaps, but it’s not much different than a competent adult making the same decision. The only difference being that she is legally a minor. If she wants to opt for no chemo and just go with palliative care, and she is fully aware what that will mean and barring any obvious mental impairment, I see no ethically justifiable reason to force treatment on her.

If I’m not mistaken, the course of Cassandra’s treatment with (first line) chemotherapeutic drugs is six months and she will have completed that treatment regimen three months prior to her 18th birthday in September, 2015.

I think it was her mother’s behavior which caused the lower court to order Cassandra to be restricted to the hospital during her entire 6 month treatment, with very restricted phone access and visits with her mother…and the Supreme Court refused to change that order.

I’ve had “experience” with a sick child who was hospitalized frequently for extended periods (not for cancer treatments). The pediatrics department(s) in the many hospitals where he hospitalized have very liberal visiting hours (they encourage parents to stay overnight). Pediatrics department(s) are incredibly well-staffed and the staff is child-centered.

Art Caplan is totally off-base with his assumptions that everything he suggested to make Cassandra comfortable, was not done.

17.25 is not almost 18. It’s almost 17.

We as a society have drawn a line at 18 and we allow not very bright people die from treatable conditions. I not going to make an exception and let a nearly 17 year old die from “cancer lite” any more than I would be willing to give a loaded gun to a depressed 17 year old.

This isn’t a tough one. I no not have a problem holding this girl prisoner in the hospital, restraining her so she doesn’t pull the chemo needle out, and sedating her if she needs radiation and won’t lie still.

In nine months, regardless of her maturity or intelligence, she can make any stupid decision she wants. Thank you CT for giving her the opportunity to become an adult.

I have a hard time believing that Cassandra really views death as a possibility, if she is like most teens. Has anyone ever met a 17 year-old with a grasp of mortality? All of the ones I have met really think they are destined to live forever. As an example, many kids with diabetes have significant problems ages 15-20 where the combination of the naturally tendency to rebel with profound disease results in recurrent hospitalizations by refusing routine medications (i.e., insulin) that could keep them out (in my skewed sample set as a part-time hospitalist).

@Paul:
The legal powers we’re talking about here have been around since before any of us were born, so there isn’t a slippery slope here.

@Science Mom

The plaintiff’s attorney made a cogent argument that the Connecticut legislature has already enacted laws to permit a child under 18 to secure an abortion and to determine if she wants to donate her body (organs/tissues?) after death.

That being the case then Cassandra has a right to choose her own course of treatment, in my layperson’s opinion of course.

If minors had the right to choose their own course of treatment, he CT legislature wouldn’t have had to care out an exception to let them choose abortion, would they?

(sorry for the expression) sometimes you have to shoot a hostage.

Too soon.

@GregH:

Cognitive development is still ongoing at 17 and 18 (up to the mid-20s), and late-teenaged people are pretty terrible at decision making.

There are some that argue that the fact hat we don’t let children make consequential decisions before that point might contribute to that ongoing cognitive development and terrible decision making. I’m not convinced myself, but it’s an interesting idea.

I believe so many people are incorrectly viewing this case as body autonomy for an almost whole adult. It is not. This child is not an informed, rational person. She is closer to a cult victim. She has been denied an education by her mother, her only present parent, and brain washed completely. Not until she gets deprogrammed from her mothers abuse can she fully participate in her own health choices. The state is doing the right thing. We cannot allow parents to abuse and neglect even if their victim days it’s ok.

If minors had the right to choose their own course of treatment, he CT legislature wouldn’t have had to care out an exception to let them choose abortion, would they?

If in fact abortion for minors is legal in CT then it is analogous to this case, again in my opinion. I can see cogent arguments for both sides but if the law allows for one choice, then I can see an argument for this.

There are some that argue that the fact hat we don’t let children make consequential decisions before that point might contribute to that ongoing cognitive development and terrible decision making. I’m not convinced myself, but it’s an interesting idea.

I am convinced. An interesting discussion with a psychologist friend about how helicopter parenting was impeding and delaying development. Anecdotally, speaking to uni professors would support this observation.

I understand the urge to compare this to teenagers seeking abortion but it shouldn’t be. Strictly medically speaking, an abortion is actually much safer then forcing a young woman to carry a child and go through child birth.

The debate in this thread is the very reason for my assessment above – that these situations need to be handled on a case-by-case basis. The fact that the CT supreme court didn’t deem a 17-year-old to be a “mature minor” indicates that there’s perhaps more to this story than meets the eye. It doesn’t mean that in a different case a 17-year-old who refuses life-saving treatment wouldn’t be allowed to do so.

Thanks for this very valuable post. I’ve been asked to appear on our local Fox affiliate to discuss this case. I’m a historian of medicine who has written about the history of adolescent medicine. It’s helpful to see what clinicians have to say about this.

I understand the urge to compare this to teenagers seeking abortion but it shouldn’t be. Strictly medically speaking, an abortion is actually much safer then forcing a young woman to carry a child and go through child birth.

Sure I get that but that really isn’t the point; it’s about recognising a minor’s autonomy over her own medical decision. It’s a dreadfully slippery-slope I realise but I do see some similarity.

I think a lot of people are conflicted about this for the exact same reason- this girl in months away from being 18. But arbitrary lines have to be drawn somewhere. She cannot vote, for example and would not be able to vote by claiming that she is almost 18. She won’t be able to drink at 20.5 years-old. So I think the state is right to force treatment on her.

I dunno. I get what you’re saying, Yvette, but you’re comparing being prohibited from an action with being forced to take an action. The former is more defensible, I think. It’s easier to say “you don’t get to vote until 18” than it is to say “you can be imprisoned and forced to get chemo against your will until you turn 18”.

I’m also concerned that it’s a wasteful exercise in futility. She’s gonna turn 18 in 9 months. If her treatment isn’t completed by then, she’ll almost certainly abandon it anyway. Is there any point forcing her to start a treatment that she cannot be forced to complete?

I wish we had the legal tools to isolate the mother. Lacking that, the only choice is to isolate the child.

Cassandra is a Connecticut resident and minors who reside there are permitted to obtain an abortion without parental consent. They are also permitted to obtain STI (Sexually Transmitted Diseases) care without parental consent, per the Guttmacher Institute:

http://www.guttmacher.org/statecenter/spibs/spib_OMCL.pdf

IANAL, but wouldn’t a decision by the Connecticut Supreme Court for the plaintiffs, be construed as usurping Connecticut’s legislature?

Treatment with ABVD seems to be the gold standard for Hodgkin’s Lymphoma and the treatment regimen lasts for six months (testimony Supreme Court hearing). The treatments are usually done on an outpatient basis, with hospitalization required for some severe side effects. Future fertility may be affected…far more common for males undergoing ABVD treatments:

http://en.wikipedia.org/wiki/ABVD

Still, IMO, a tough case. I lean toward the actions that Clarissa’s doctors instituted.

The law is that if you are under 18, you are a minor. Laws are set in place for a reason, not always for good enough reasons but Conneticut is adhering to those even at 17. From reading this, Cassandra is not (yet) tampering with her port so that is a positive sign. I hope she completes treatment and succumbs to radiation.

What really is upsetting is that perhaps Cassandra and her mother have been highly influenced in the plethora of the burgeoning wellness and alternative cancer cure sites on the internet. They seem to have a few common threads…. they are good looking young adults, they claim to have ;cured; their cancer naturally, they are anti vaccinations, guzzle green juice, have a tribe like following and shun all conventional treatment. Some even made the cancer ‘journey’ (I dislike that description) look like an adventure. I was almost caught up with them.

When Cassandra is done with chemo, and is 18 and turns to alternative methods, she may even claim that they are the reason she is still alive.

“But arbitrary lines have to be drawn somewhere. She cannot vote, for example and would not be able to vote by claiming that she is almost 18. She won’t be able to drink at 20.5 years-old. So I think the state is right to force treatment on her.”

OK, but let’s be consistent here. If the arbitrary lines are fixed and inflexible, no more trying some minors as adults for capital crimes, right? If she murders someone in an attempt to escape the hospital and the state decides to try her as an adult, does she then have legal grounds for refusing treatment? How f’d up would that be?

As Calli said, if the recommended course is for longer than 9 months for treatment, and she doesn’t change her mind in the next 9 months, what then? Would it be ethical to accelerate the treatment plan to get more courses of chemo in before her 18th birthday? Would they schedule a session on the day before her 18th birthday and force her to accept it?

The only thing that is clear to me in this case is that it is a good example of the fact that sometimes there is no good solution to a problem.

Out of curiosity, what is the state’s position on force-feeding anorexics?

@Science Mom:

If in fact abortion for minors is legal in CT then it is analogous to this case, again in my opinion. I can see cogent arguments for both sides but if the law allows for one choice, then I can see an argument for this.

What you’re missing is that the law specifically gives minors medical autonomy in that one situation only. This is literally an exception that proves the rule that minors do not in general have medical autonomy.

Poor deluded kid. Clearly she wasn’t listening when someone told her that dying of cancer offers worse quality of life than chemo. My dad and sibling tell me it sucks…but they much prefer it to the alternative. 35 years later for him, 7 for her.

By the way, I like your Freudian slip. “making cure that children in these situations obtain treatment”

@herr doktor bimler:
It depends, again, essentially on whether the anorexic in question is a minor or not. Minors can be force fed nasogastrically; I think, at least these days, that is not done with adults.

I totally agree with Karl Withakay when he says “If she murders someone in an attempt to escape the hospital and the state decides to try her as an adult, does she then have legal grounds for refusing treatment?”

Yes, she is a minor but I don’t think the state should have the right to force her to receive chemo, even if it is medically in her own best interest. Where does state control of people’s lives end? This is the essence of Libertarian versus Big Brother philosophy.

What you’re missing is that the law specifically gives minors medical autonomy in that one situation only. This is literally an exception that proves the rule that minors do not in general have medical autonomy.

Sure if you want to argue absolutes. Even I’m not that brazen to do so. It’s an ugly case for which there is no good solution; I’m merely leaning towards allowing for some autonomy based upon the fact that other situations are allowed, amongst other reasons.

Hmm. I’d have to say that, if we often try teenagers as adults for serious crimes, then we have to recognize that they are at least similar to adults, if not actually legal adults yet. (My experience is unusual, but at 17, I was living on my own, attending college, and holding down a job – an adult in every meaningful sense of the word. I don’t really know what my legal status was, since I was never emancipated, just had left home and not been stopped. Thanks Gott.)

It strikes me that, in this case, though, there’s really no good or simple answer. I do think that people with a fatal disease ultimately have to have the right to live or die in the way they see fit. It’s different issue even from anorexia, since anorexia involves actively harming one’s self, whereas in the case of fatal illness, the patient didn’t actually choose to get the disease. (We don’t, it seems to me, allow people to die from a suicide attempt if they can be saved, at least in the US – there is a certain limit on bodily autonomy, practically if not legally. Barring actual self-harm, though, I feel very uncomfortable about forcing medical treatment on somebody…)

Of course, we’d all feel very different about the situation if the person in question was 80 instead of 17. And there is the question of how much she is influenced by her mother, or if she is really in a state to make decisions regarding her health; as Orac noted above, though, barring an actual examination showing her to be non compos mentis, for reasons of immaturity or otherwise… it doesn’t seem quite right to force treatment.

Sigh.

Glad to hear your take Orac. When I saw the first article on the case I figured this one would be tougher. I am with you, while I feel strongly about young children receiving treatment things get more murky with a 17 year old. I have read the comments and while I do agree the waters are still murky in this case the court found her not competent and that’s the way it is. I wish the cheery fantasy presented by Art Caplan (who I also like most of the time) was reality, but thinking that these interventions haven’t been tried is a bit of a slap in the face to her medical team. I don’t necessarily agree that court is the best place for these cases to end up, and would hope that issues can be worked out between families and medical personnel but I am a rosy glasses kind of gal. I would hope that she gets counseling and comes to terms with this and doesn’t shun future medical care but I am hopeful that she will have a long future ahead of her to make those decisions.

Karl:
“If the arbitrary lines are fixed and inflexible, no more trying some minors as adults for capital crimes, right?”

Roper v. Simmons (2005) makes that not an issue. The death penalty cannot be given as a sentence to anyone who was under the age of 18 at the time they committed the crime in question. Now we do still try minors as adults for other offenses, and I do have a problem with that, on a purely equitable level. I.e. it is inequitable to place adult levels of responsibility for ones actions on a child if we do not therefore give that child the same freedom of action as an adult. Put another way, I have a problem with people being subject to laws they have no say over. If you are going to try someone as an adult, they should have the rights of an adult, to vote, to drink, to die for their country, etc.

As a question of morality (f-ethics) I think Orac’s argument is unassailable. This young woman has made a choice for quality-of-life over quantity-of-live, and is now being forced to endure an even worse quality-of-life until September, when she will undoubtedly pull the plug on the chemo. In order to justify this morally, the burden of proof lies not on Cassandra or her family to establish her competency but on those who would imprison her to definitively establish incompetency. And I doubt they have, or even can.

But in the end, I suspect it’s not a moral decision. As folks have noted, as pragmatic policy decisions, the law draws abstract lines all the time. Some 12 year-olds are more qualified to vote than a lot of 40 year-olds. So I suspect it comes down to legal precedence. In the eyes of the law a minor is a minor, and the 18th birthday is the magic number. If Cassandra is one day short of that, a court decision allowing her the self-determination any sound moral calculation would admit she may deserve sets a legal precedent that would allow ANY minor argument for similar rights.

Consider the case of Makayla Sault for comparison. Her father is the pastor of an Evangelical Christian church and the family are devout believers in that faith. They had no hesitance whatsoever is taking Makayla to McMaster Hospital for treatment of her cancer, and when given the same prognosis Cassandra received — 85% survival with chemo, virutally zip without it — they approved the treatment for their daughter.

It wasn’t that Makayla then had “trouble dealing with the side effects” and said she couldn’t “take it any more.” She wound up in the ICU and told her parents she was sure the treatments were killing her. Then she had a vision of Christ appearing in her room to tell her she would be healed, and her parents — not ones to doubt the Son of God — removed her from the hospital. McMaster doomed what small chance she had for returning to chemo by filing with child protective services, which could only have resulted in a protracted custody battle that would have been resolved too late, instead of requesting a mandated treatment plan from the board charged with dealing with such cases under Canadian law. Brian Clement’s homicidal ‘natural’ cures and ‘First Nations Rights’ didn’t enter the picture until well after the fact.

AFAIK, Connecticut doesn’t have an authority that can mandate a treatment plan,

None of the news stories on Cassandra I could find note where her condition was diagnosed in September or who made the call to refer the case to Conecticut DFS. The court ordered her to undergo chemo at Connecticut Children’s Medical Center — a part of Hartford Hospital, which has a good rep generally — and being from Windsor Locks, just North of Hartford, that would have been a logical place for Cassandra to have been seen initially. In The Hartford Courant, Cassandra herself notes the September diagnosis followed “a stressful summer of blood work, examinations and biopsies.”

The Courant identifies Jackie Fortin as an “unemployed house cleaner and caterer” says she “personally opposes ‘chemicals and toxins’,” has home-schooled Cassandra, and claims to have been seeking “alternative treatment” from the get go, although her and Cassandra’s attorney have made no mention of this to the court. The competency issue seems to revolve around Fortin’s influence in Cassandra’s thought. They would seem to be of different minds, as Fortin states flatly “She’s not going to die,” Cassandra, however, concluded an op-ed she wrote for the Courant:

This is my life and my body, not DCF’s and not the state’s. I am a human — I should be able to decide if I do or don’t want chemotherapy. Whether I live 17 years or 100 years should not be anyone’s choice but mine. How long is a person actually supposed to live, and why? Who determines that? I care about the quality of my life, not just the quantity.

So I make these guesses: Cassandra was being seen at CCMC. She may even have asked to see the doctors there over her mother’s objections. She had spent enough time at CCMC during the course of diagnosis that the staff there had come to know her and Fortin fairly well. They reported the case to DCF because it was the only available legal option to save Cassandra’s life. When she ran away to escape the chemo, the CCMC knew full well that forcing her to resume would be a form of torture that violated her civil rights, and any sense of moral decency directed at her specific situation. They also knew it would be quixotic given how soon she would come of legal age. However, as a Children’s hospital they have faced cases similar to 10 year-olds begging off chemo in the wake of religious visions, parents who have refused treatments for their kids on religious grounds, parents who have pulled kids from chemo after initial tumor reduction in some other form of magical thinking. They know that a legal precedent based on this mature 17 year-old will extend down to the many 10 year-olds they will see in the years to come. They opt for the lesser of to evils, and choose to subject one self-doomed young adult to inhuman treatment in order to save the lives of many more younger children.

If that is indeed the case, I can find no fault in the actions of the hospital, DCF, or the court.

As you have to register with the Courant to see this, I report it here in it’s entirety for the curious.
______________
Over the past 17 years, I have lived a good life. It has always just been me and my mom and all of our pets. My mom raised me well, to be a strong, competent and independent woman. She taught me right from wrong and always led me in the right direction, standing by my side through every decision I made. I wouldn’t have my strength, determination and motivation if it weren’t for my mom. She played the role of a mom and a dad, and she did a damn good job!

Words cannot describe what my life has become over the last few months. “Horrifying” seems like an understatement. What I have been going through is traumatizing. Never did it cross my mind that one day I would be diagnosed with cancer. In September, after a stressful summer of blood work, examinations and biopsies, I was diagnosed with Hodgkin’s lymphoma.

My mom and I wanted to make sure my diagnosis was correct, so we agreed to seek a second opinion. We wanted to be 100 percent sure I had cancer. Apparently, going for the second opinion and questioning doctors was considered “wasting time” and “not necessary.” My mom was reported to the Department of Children and Families for medical neglect because we weren’t meeting the doctors’ time standard.

In no way is my mom neglectful. She has always put me before herself. I am offended by anyone who believes otherwise. My mom has been identified as “hostile,” “neglectful” and “unsupportive,” three untrue words that break my heart.

In October, DCF and nearly the entire Windsor Locks police department arrived when I was home alone and surrounded my house, banging on doors and windows. I hid in my closet crying on the phone with Mom and my friends until Mom came home. I sat in my closet for at least an hour while Mom, DCF and the police argued downstairs. I was scared.

I had to leave with DCF. They had me medically evaluated and placed in a foster home until a court date. I was devastated. I needed to be with my mom. Taking me away from my mom in no way is in my best interest. There are children who need DCF, but I am not one of them.

In November, I was allowed to return home to my mom with the promise to start chemotherapy immediately. Although I didn’t have any intention of proceeding with the chemotherapy once I returned home, I endured two days of it. Two days was enough; mentally and emotionally, I could not go through with chemotherapy. I felt backed up against the wall. I had no right to choose what I wanted. I was told I had a voice and was being heard, but it didn’t feel like it. I took things into my own hands — I was fed up with DCF — and ran away. I was willing to leave everything I loved — my mom, my friends, my job, my cat, Simba, and most important, my life that I absolutely loved — to get away from being forced into something that I didn’t want.

I packed all my stuff after Mom fell asleep, left my house and met up with people who were willing to take me in and help me. I had no intention of returning or staying in Connecticut. The people I stayed with were loving and understanding and took such good care of me.

I began to see myself on the news and people from all over were trying to contact me. Some people thought I was dead, and I heard my mom was going to be put in jail, because it was assumed she knew where I was or that she was hiding me somewhere. She didn’t — I never even told her that I was leaving — and I couldn’t, because I knew she would try to stop me. After about a week, I returned home, because I didn’t want people to think I was dead, and I would never forgive myself if my mom went to jail for something I did.

DCF immediately brought me to the hospital to be evaluated. I was OK, and they let me go home. I thought it was over. I was wrong.

In December, a decision was made to hospitalize me. I didn’t know what was going to happen, but I did know I wasn’t going down without a fight.

I was admitted to the same room I’m in now, with someone sitting by my door 24/7. I could walk down the hallway as long as security was with me, but otherwise I couldn’t leave my room. I felt trapped.

After a week, they decided to force chemotherapy on me. I should have had the right to say no, but I didn’t. I was strapped to a bed by my wrists and ankles and sedated. I woke up in the recovery room with a port surgically placed in my chest. I was outraged and felt completely violated. My phone was taken away, the hospital phone was removed from my room and even the scissors I used for art were taken.

I have been locked in this hospital for a month, missing time from work, not being able to pay my bills. I couldn’t celebrate Christmas and New Year’s with my friends and family. I miss my cat and I miss fresh air. Having visitors is complicated, seeing my mom is limited, and I’ve not been able to see all of the people I’d like to. My friends are a major support; I need them. Finally, I was given an iPad. I can message my friends on Facebook, but it is nowhere near like calling a friend at night when I can’t sleep or hearing someone’s voice to cheer me up.

This experience has been a continuous nightmare. I want the right to make my medical decisions. It’s disgusting that I’m fighting for a right that I and anyone in my situation should already have. This is my life and my body, not DCF’s and not the state’s. I am a human — I should be able to decide if I do or don’t want chemotherapy. Whether I live 17 years or 100 years should not be anyone’s choice but mine.

How long is a person actually supposed to live, and why? Who determines that? I care about the quality of my life, not just the quantity.

The failure of the mother to seek out adequate and timely medical advice is child abuse. The psychological damage done to a child who suddenly realizes that her mother would rather see her die than seek treatment for a terrifying disease must be devastating. It is also criminal.
The state is right to intervene in this situation.

I haven’t read all the comments but I’ll add my vote for forcing her to receive treatment.

Two thoughts:

1. 18 is 18. Of course it is arbitrary, but it is the legal age, the dividing line between adult/not adult. I think it has to be respected, because it serves a purpose. If 17.25 is really the same as 18, then isn’t 16 the same as 18? If 16 is really 18, well then, 15.5 is not so different from 16, is it? Where does this argument lead? You could say no of course 16 is not 18, but then what are you saying – if you’re making an argument to lower the age of majority then make that argument – otherwise we have to enforce the one we already have.

2. There’s an argument for considering her suicidal. We don’t “let” anyone commit suicide, do we, not if we can stop them?

That said, I don’t discount that it must be pretty horrible for the physicians and others caring for her to have to implement this. I think they have to grit their teeth and do it, though. The same way they would hold her down, sedate her, whatever was necessary if she were a six year old and couldn’t understand that you were saving her life. You wouldn’t like that, either, but you’d know you were doing the right thing. I think this girl is probably no more mature than a six year old in this regard, and there will come a day she is glad you saved her life.

I’m with Orac. Maturity is something that people achieve at different ages. Cassandra is old enough to control her sexual reproduction but not life and death?

The more I think about it, I can’t understand the arguments for her autonomy. Autonomy is nice but not if she winds up dead. There’s a chance to save her.

Just briefly, as I’m going to get OpenJDK 7 running on an OS X 10.5 PPC machine come hell or high water, there was a short paper (PDF) in Adolescent Medicine few years ago on the ethics of force-feeding in anorexia nervosa that might be apropos.

My daughter was DX with Hodgkins Lymphoma and had treatment. Yes it was hard but she is a beautiful young woman with a great husband and daughter, good job and great life
Without treatment this would not be the case
I have had non Hodgkins lymphoma 4 times now . Had very successful tx and plan to be with my family a long time. I hope she has a long and happy life

The letter from the daughter sounds highly edited, with a lot of spin. In my experience, very few 17year olds write this clearly.

Nancy thank you for sharing your experiences with your daughter’s cancer treatment and your own treatments for non Hodgkins lymphoma.

I’m sending my best wishes to you and your daughter for a happy and healthy New Year.

-lilady

My brother had non Hodgkins lymphoma diagnosed shortly after turning 15. He lived and endured the worst of chemotherapy for almost six months before secondary effects, an unidentified infection and (we suspect [we being the family, the ICU doctors and the health superintendence]) medical neglect took him to the other side, around 6 weeks ago. And he said over and over that he sometimes thought of running away, spend a few weeks with us, and die. (he however underwent every hospitalisation being 100% cooperative, all the way to the end). Having that memory so close, I don’t think that it is a sign of being suicidal or immature, but rather just their ways to see life once it seems to have an expiration date. On the other hand, my brother only held his thought as a fantasy, and held the treatment that could save his life to the end. Therefore, I don’t think that Cassandra’s argument is valid, since I saw someone in even a worst condition go through the same line of thought to end up choosing SBM, although I recognise I don’t know her background or context well enough to give a fully informed opinion. And referring to the transcript of sadmar, what surprises me is that she knew she had lied, done wrong and deceived everyone around her, yet she thinks the actions taken to restrain her and make sure she wouldn’t resist were excessive. The actions against her sound horrifying, but let’s take away the emotional appeals:
On the first paragraph it only says she was raised by her mom with pets. Although it’s curious that she was taught about rights and wrongs, but her mom stood by her side in every decision she made, which means she either made right decisions all her life or her mom spoiled her. Or she was wrongly taught about right and wrong.
Next paragraph tells us that she spent at least part of her summer being examinated and that on September she was diagnosed with Hodgkin’s lymphoma.
Next paragraph tells us that they wanted a second opinion but didn’t follow the channels designed for that matter which lead her mother to appear neglectful in front of the doctors eyes.
Next paragraph tells us nothing but that she disagrees with the neglectful adjective added to her mother, which isn’t news.
Next paragraph tells us that on October the DCF and police officers came to her house in a not so polite way to take her away. Whether this is the protocol for neglected children to be taken, I don’t know.
Next paragraph tells us that she was effectively put in forster care and medically assessed (but it’s not specified whether it was physical or psychological, or both), and it had a huge impact on her mood.

As a followup to my last comment: I’d continue deconstructing her testimonial but it’s 12:22 am here, I recently had surgery and the pain tires me, and it’s not like she will change her style. Plus, it’s hard to do it in a mobile phone browser. And I realised that the comment would need to be of truly oracian lengths to do the whole transcript of the testimonial. But I wanted to add something. She says that after two days she was fed up with chemo. From my brothers experience two days of chemo isn’t enough to see almost any of its benefits or side effects unless you had a dose that made the oncologist suspicious of not knowing what he’s doing with the infusion pump. So I call buffalo feces in that statement. And I leave to the interested the homework of deconstructing the rest of the transcript if they want. Good night everyone

Sorry to hear about your pain.

🙂 Have you tried acupuncture>? 🙂
Just kidding, of course.

It’s funny how we can develop enough feeling for these people we’ve never met, of anger and sympathy… involvement in these distant situations that may have some direct relevance to our experience, or ring some metaphorical bell, that we can stay up way past our bedtimes reading and writing about this stuff.

As the slang expression goes, ‘I feel you, Diego.’ And it comforts my existential owies to read your words.

Get well soon.

What this really comes down to, is a classic case of treating the disease but not the patient. And of course it doesn’t help that they (mother and daughter) have little in the way of resources to actually seek out other opinions or (yes, just imagine !) travel to another country (or at least another venue) to seek care.

I found Cassandra’s letter very articulate and she doesn’t sound ‘isolated’ to me, in fact she sounds like she has been helping her mother financially (references to her job and needing to pay bills). The part about being strapped down and sedated, then waking up with a port in her chest, is pretty horrifying. Definitely not ‘treating the patient’. She is more than her diagnosis, but TPTB seem to have forgotten that.

This is an almost unbearable situation and I don’t think there is a good way to handle it. I think in Britain there would be appeals to the European court of human rights and I think they would prevent this happening. Moreover I think they would be right.

I find it impossible to think about the case without comparing it against my own experience of life. By 17 I was certainly able to know whether or not I wanted medical treatment and understand the inherent problems that came with each side of the debate. In fact I did – although in not so dramatic or horrendous way as the current case. I also think it taps in to a MUCH larger issue that does not seem to have been mentioned so far. Even at 17 there has to be consideration of the right to die – and the provision of that in a painless a way as possible. That is after all what she is choosing anyway, just without the benefit of medical science to ease the way.

I cannot imagine suffering through a single day of chemotherapy and at 17 would have felt even more strongly. I have heard it is the nausea and vertigo which cause the worst problems for patients and – quite genuinely – in my case I do not think I could take month after unrelenting month of those symptoms, hour piled on slow hour. The inescapable sickness and dizziness are specifically why I do not drink or smoke! If I somehow made it through I would need extensive psychological treatment – I would not be the same person coming out that I was going in. As adult I still do not think I could take that and even for a tumor that months of chemo would give me a high percentage chance of surviving I truly think I would pursue the option of a dignified death rather than face it.

I think that option should be presented to the girl. If nothing else, being faced with such stark realities may cause her to rethink her position, rally her spirits and push through. If so then I would have nothing but admiration no matter what her age.

Gemman Aster,

I think in Britain there would be appeals to the European court of human rights and I think they would prevent this happening. Moreover I think they would be right.

I’m not so sure. British courts routinely make the children of Jehovah’s Witnesses who require blood transfusions wards of court so they get treatment, and a judge in Northern Ireland ruled last year that giving a Jehovah’s Witness with severe learning disabilities a life-saving blood transfusion against his will was legal:

Summarising the case rather sensitively, Sir Declan Morgan described the unnamed 26-year-old as a man who “enjoys a close and loving relationship with his mother” and was said by her to “enjoy attending church” and have “positive social contact” through church in an otherwise difficult life. But he could not take an informed decision about transfusion because under the established rules, such choices cannot be made if “the patient is unable to comprehend or retain” the necessary information.

At least two articles of the European Convention on Human Rights were relevant, the judge noted: the second, which guarantees the right to life, and the third, which outlaws “inhuman and degrading” treatment. But legal precedents indicated that a treatment aimed at preserving life could not be considered cruel.

This case would appear to be broadly similar, in terms of mental capacity and the treatment not being “cruel and unusual” or “inhuman and degrading” since it aims at preserving life.

I don’t know what the best course of action would be in this case, apart from somehow persuading this girl that conventional treatment is the best thing for her. It’s a horrible situation with no obvious solution.

Regarding treatment of patients with eating disorders: I have been a psychiatric inpatient in an adult unit that included young adults with eating disorders who had been involuntarily committed because they were considered a danger to themselves. I didn’t see force-feeding but the patients were closely monitored at meal times to make sure they ate everything on their plate and didn’t force themselves to throw up afterward.

Regarding abortion — this isn’t quite the only area in which minors can consent to medical care without parental approval. Minors can also receive birth control and treatment for STIs, as well as emergency care in cases when contacting the parent would delay life-saving treatment. So, what’s tricky here is that most cases involving mature minors involve consenting to care rather than refusing care.

The more I read the more torn I become. If anyone wants to see my interview it will be on Fox CT at 9am EST on Tuesday. The livestream is http://foxct.com/on-air/live-streaming/

It’s an interesting comparison. Having grown up with a Jehovah’s Witness mother, I fully support the state intervening in the case of children when it comes to blood transfusion. Especially when one considers that 2/3 of kids raised as JWs end up leaving the faith, voluntarily or otherwise (yay disfellowshipping!). Kids shouldn’t have to die because their parents belong to a particularly stupid, literal-minded and draconian “Christian” sect *cough* cult *cough*.

When it comes to older teenagers, though, even I take pause. I’ve read several accounts of Witness teenagers comparing forced blood transfusions to rape. As someone who’s also been raped, I don’t find the comparison entirely trivial. That bit about Cassandra waking up to find a port in her chest seriously freaked me out. That is some dystopian sh** right there.

A full course of chemo is kind of different from a simple blood transfusion, too. I mean, we’re talking months of being held in the hospital here.

Again… Sigh.

Irina – “classic case of treating the disease but not the patient”

This I fail to see. It seems to me the doctors are thinking about the patient in the long term – specifically, the fact that she could likely have several decades of life after this is over, in which to live a full life – finish school, pursue a career, find love, maybe have children, enjoy life.

The other side of this debate is specifically focused on how awful the next few months of her life will be if she has chemotherapy (as indeed they will be). The SBM side of the debate says Let’s do this and get it over with so that the patient has a chance at having a normal life. The other side says let her go home so she can lie in her bedroom for the next few months until she dies a horrible death.

Who’s focused on the disease and not the patient, then?

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