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.
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.
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.
So much for informed consent.
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.
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.
Out of curiosity, I did a search for Cassandra and Justina Pelletier and see that some people are comparing the cases. Here’s some background on Justina’s case. Not quite comparable, in my mind.
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
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?
Too soon.
@GregH:
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 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.
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.
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 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:
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.
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:
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.
The problem with teens (not just teens, actually) is that they have this romantic notion that dying from untreated cancer is not as bad as going through chemotherapy, that they would at least “die healthy.” (Never mind that if you’re dying of cancer, by definition you’re not “dying healthy.”) My thoughts on this:
https://www.respectfulinsolence.com/2009/05/20/chemotherapy-versus-death-from-cancer/
Gemman Aster,
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:
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?
JP wrote:
“That bit about Cassandra waking up to find a port in her chest seriously freaked me out. That is some dystopian sh** right there.”
It is, it truly is horrifying. No one could possibly want to go through that, and no doctor with a lick of humanity could possibly want to inflict it on a patient.
But, that’s cancer. Cancer is to blame – no one else. As horrifying as it is, it is being done for all the right reasons, and after intensive ethical and legal scrutiny. That is exactly why we have ethical and legal oversight of such cases. Careful parameters are set, precisely because the scenarios are so nightmarish. In this present scenario, the parameters have been attended to with scrupulous care and the doctors (and the legal system granting them the go-ahead) are doing the right thing.
Regarding obtaining “informed consent” from a patient of any age: it is logically impossible to obtain full, right, and proper informed consent from any person who does not possess a good set of critical thinking skills.
The other point to seriously consider is that there are some patients who have deeply personal reasons for rejecting a life-saving treatment: entirely valid reasons, even though their reasons would fail not only the test of formal logic, they would fail the tests of public scrutiny, common sense, and legislation.
I would like to remind readers that it is wholly unethical to ‘diagnose’ and/or pass judgment on individual cases unless you are a clinician who has interacted with the patient.
Orac’s comment #5 clearly demonstrates both the agonising decisions that clinicians far too frequently have to face and how extremely fortunate we all are to have such clinicians who have this exemplary level of empathy, understanding, and dedication to their literally vital work.
Pete, I agree with you that we are fortunate to have clinicians as you describe, with such dedication and sensitivity as well. I don’t agree that it is unethical for anyone other than clinicians who have interacted with her to be discussing this case, which is public and in the news. None of us here have any influence whatsoever over what becomes of this girl. We can, however, hope to influence others who might be considering foregoing chemotherapy (for themselves or their children). An open discussion of the issues is valuable, even among laypeople.
#70 Vertigo would be a rare reaction to chemotherapy drugs and nausea is usually controlled-there have been excellent anti-nausea drugs available for the last twenty years.
The chemotherapy is not fun, but the vast majority of cancer patients don’t experience it the way you’ve imagined.
Frankly, if she wants to exercise her right to be stupid, WITH concurrence of her mother, I’d let her. Younger child who have no idea what they’re getting into and refused treatment by their parents need protecting, but an active thinking teen who wants to throw their life away? Let her. Let Darwinism take its course.
Just make sure that the taxpayers don’t pay for her woo treatments. i.e. “not covered”.
The mature adults I know who are in chemo welcome the opportunity to have a port so the nurses won’t have to start a new IV in the arm for every treatment. Cassandra’s use of the port placement as an example of how horribly they’re treating her is another example of her immaturity, IMHO. As others have said, experiencing an untreated cancer is a horror. If the girl and her mother were ever to convince me of their argument, they would first have to convince me they know what the disease will do to her if they don’t treat it. I meet a lot of cancer patients both in the real world and online, and I have yet to see the Tooth Fairy rescue anyone.
Re #70 & 79, I had 6 months’ worth of chemo and 1 month of radiotherapy following surgery for colo-rectal cancer. I had a range of reactions during this time (nausea, vertigo, diarrhea, intolerance to a vast range of foods) but they were intermittent, not a steady-state condition. Periodically my oncologist gave me a one-week break, which helped an awful lot. The radiology was carried out without break, concurrently with the chemo, but it was not hard to take. I hated the chemo, but developed a great deal of respect for the team doing it all.
To mitigate the ill-effects, I found that exercise helped. I rode my bike and did weights at the YMCA, but no biking for several hours right after chemo sessions because sense of balance was affected. Overall it was an experience I would much rather have deleted from my CV but hey, it saved my life. That was 16 years ago.
Great discussion here, great article by Dr. Gorski. As usual, a learning experience.
If I knew the girl, I would absolutely in her face with the facts and trying to talk her into getting treatment. Just for the record.
At the same time, we’ve decided as a society that 16-17 year old minors are presumed mature enough to drive; driver’s ed and testing is focused on regulations and skills, not psychological assessments of maturity. Even though accidents, when I took Adolescent Health, were the top cause of death among teens, and many of those accidents were vehicular, in which they were driving themselves or with another teen driver. We all know that driving is a series of decisions, many of which, if you decide wrong, can kill you and others, and we figure 16 is old enough for that.
Declining chemo isn’t exactly the same, but maybe it’s close enough, and I’m not comfortable with “18 is 18, no slippery slopes” as the principle for why it’s being done this way. We’re not talking about a law of physics here; we’re talking about a law that a person in a particular position made, and got others to agree with, and another person in a comparable position can change in much the same way. We could replace the whole age-based system with maturity testing as of next Tuesday if the political will to do it were present, for example.
So, provided she’s not developmentally delayed in some way, while I think she’s tactically wrong to want to skip out on treatment, I also think that there’s a very real possibility that she has the right to be wrong.
^ would absolutely BE in her face
Preview? Edit? ANYTHING???
I think we allow the earlier age for driving because for many teens it is necessary to work, and a car is necessary to get and keep a job. Adding a maturity test would not be acceptable because it would likely be subjective and culturally relative, perhaps biased against certain minorities and thus more likely to damage them economically (making it harder for them to get jobs). At least, these are what I’ve always understood to be the reasons that efforts to raise the driving age never got anywhere.
It’s possible to look at cases like this in terms of “rights,” but I think the “responsibilities” angle is more appropriate. Instead of focusing on this girl’s dubious “right” to foolishly and needlessly end her life out of ignorance and immaturity, why not focus on her mother’s responsibility to care properly for her daughter? I can sympathize with the girl, of course, but the mother I haven’t a shred of sympathy for. She’s going to kill her daughter. And there’s no excuse for it, ignorance is no excuse, she’s had the realities of the treatment and the prognosis explained to her at length, I’m sure.
The state needs to step in and care for her because her mother can’t or won’t. Her mother is responsible for her health decisions, for the most part, until the girl is 18, and the mother is screwing this up pretty badly – badly enough to kill the girl.
@sadmar #68 Thanks a lot. Yeah, I tried imaginary acupuncture, after all, if I’m getting just a placebo, I might as well make up my own placebo, right?
Actually, the pain is bound to be gone within the next week. The other pain, however, is bound to be there forever. It’s like learning to walk or write: it’s hard in the start, but you eventually learn about it. Although you always commit mistakes from time to time, but you learn to correct them and live with it.
@JP #74 Actually, we are relying in the testimonial of a girl who at best is in a situation where she has to use every resource within her reach to convince the judge that she is right and mature, so that the pressure and context may give her a bias, and at worst, as she herself showed in her testimonial, she could be deceptive and manipulative, which means that she could be using said skills to actively distort the reality. In any case, her side of the story is most likely distorted and unless we can check her medical history and a psychological assessment of her credibility that says that she’s most likely saying the truth, we shouldn’t take her testimonial (specially the highly emotional parts of it) at face value, or, at least, without a grain of salt (although I recommend a couple pounds of it, but that’s just my own mostly likely biased opinion)). In any case, from my brothers experience, having a port surgically inserted, specially the kind that doesn’t need to be changed, saves you from a big lot of painful injections, and her impression that the port was put without telling her what she would have done, which is most likely untrue, make me quite skeptical against her whole testimonial.
Well, if you read it carefully, she didn’t actually say that they didn’t tell her:
“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.”
Diego:
I’m very sorry to hear about your brother; that must be a very hard thing for you to go through. I’m glad you’re doing okay.
Funny coincidence: I’m back in the vicinity of my home “town” visiting. (For a couple more days, anyway – I’m flying back to the frigid Midwest on Monday night.) I was in town earlier today, and ran across a girl I went to school with who had leukemia when we were in 8th grade. We were never close – she came from a rather higher social class that I did – but she always struck me as a nice person. I’m glad to see she’s doing well. (We were each walking with a friend and just briefly said hi, but she had a big smile on her face.)
You’re right that we all tend to come at things with our own biases. It’s probably a naive position, but I tend to take people at their word. I don’t know if there’s a word for this, btu I often tend, probably erroneously, to assume people are similar to me. I’m a nice person: my basic assumption is that other people are nice. I’m an honest person: my basic assumption is that other people are honest. I probably assume people are smarter than they might actually be, too.
I’m aware that a port in the chest makes things easier for chemo patients. It must be really frustratring for you, having lost a brother to cancer, to see somebody objecting to treatment for said disease. It makes me pretty sad myself. I guess, to me, if she is being honest about her experience, though, her story is pretty horrifying. Even if she did know what they planned to do, it certainly doesn’t seem like she wanted it. Having something placed inside your body when you don’t want that done really would be pretty violating, especially if you had to be tied to the bed and sedated in order to have it done. That’s what I found disturbing.
I suppose you could be right and she could be lying or being hyperbolic or otherwise dishonest. Given that she admitted to lying and plotting even in her own testimony, you might not be too far off base.
Like I said though, I usually take people at their word, since that’s pretty much what we have to go on when it comes to communicating with each other.
In any case, it’s a very sad story.
I hope you’re doing alright, wherever you are. Best wishes.
I am a practicing pediatrician, and spent a year working exclusively in an specialty oncology hospital. Ethical issues like this come up in the treatment of minors much more often than you might anticipate. I imagine that there is a lot more going on than is being reported. For example, it seems like the “second opinion” plan from Cassandra and her mother was something that needed to happen right away, but didn’t. It sounds like they missed appointments and made excuses, and in the case of a fast-growing and easily treatable cancer, that is unacceptable. If they wanted other opinions, I’m sure the docs at the current hospital would have been happy to help them get appointments in Boston, NYC, etc.
Additionally, families are always notified when DCS is called – the story about the swat-team like invasion may be true, but it only occurred if they refused other avenues of communication with social workers and DCS. And no one in a pediatric hospital ever restrains a child unless they are a threat to themselves or others; restraints have to be justified and re-evaluated every 24 hours if not more often.
About the court decision, it seems pretty clear from the little information presented that she was given a chance, under the “mature minor” law, to present some evidence that she had faced her diagnosis and evaluated it in a mature way. Based on her letter above (and thanks for that, couldn’t get past the paywall myself!), she has seen one too many movies where the pretty girl dies of cancer after showing everyone and especially the hunky boy what life is really all about. She looks beautiful the whole time and everyone remembers her always, and the hunky guy never gets married. Sigh. She’s so brave! Sigh. I think she has no real idea about what death from lymphoma might be like, or how she will do with chemo.
The state has a compelling interest in treating a minor. We could also force her to undergo rehab, or psychiatric hospitalization, and we do, routinely. In pediatrics we often compel children to do things they don’t want to. We have patients who don’t understand what we are doing, patients who are scared from the minute they walk in the door, patients who are severely autistic, and plenty of sullen teens. I think it’s unlikely that she will need to be strapped down for anything else. I’m surprised that she was in the first place.
One more note – having met Art Caplan when I was younger and followed his work for a long time, a little defense. I am guessing he was asked for remarks and either given a word limit or they were condensed. Those are some very brief remarks, which is why they come off as flip. But I agree, we have a line in medical custody. It’s 18. People can argue about other rights having different ages and that’s an interesting debate, but until the whole code is rewritten, we have to stick to 18. If you are 17 and 364 days and I don’t have consent from your parent, I can’t give you a tylenol or a multivitamin, end of discussion. Most of the time it’s a huge pain. For this particular girl, I think it is going to end up being the best thing that ever happened to her, even if she doesn’t feel that way right now.
JP wrote: “That bit about Cassandra waking up to find a port in her chest seriously freaked me out. That is some dystopian sh** right there.”
Would you feel the same if she had required emergency open-heart surgery to save her life, and woke up with a cracked sternum and a huge incision down her chest?
I would hope that Cassandra will have opportunities to talk with fellow young cancer patients at the hospital. Perhaps over the next few months that would change her point of view – especially if she’s getting less confounding influence from her dotty mother.
Probably not, unless she had been conscious before the emergency open heart surgery and refused it. Well, in which case, she wouldn’t have woken up. It’s a pretty different situation – I believe the default in situations where somebody is unconscious and unable to give consent is to do what one can to save their life. Of course, there are people with advanced directives stating that they don’t want to undergo heroics to prolong their lives, although they tend to be quite a bit more advanced in age or otherwise in a profoundly bad way.
As I’ve mentioned elsewhere, I’ve been checked out for a while, but I’ll ask all the same:
Has anyone ascertained whether the mother or the daughter came up with the chemo-toxins-gonna-killz-mah-organs routine first?
The mother (of course) claims it is solely Clarissa’s decision to avoid the chemo-toxins-gonna-killz-mah-organs routine.
Clarissa’s recent statement made after the Supreme Court hearing is that it is her own decision.
Supporting Diego @67
I had the same thought about her comment of being fed up with chemo after 2 days.
You get a very high dose of chemo to basically destroy your bone marrow for a stem cell transplant yet the next day you still feel normal. It is after a few more days that the effects truly hit and yes you then feel quite crappy – I thought at the time that I don’t think I could go though this again. Two years later it looks like here we go again. But the alternative is worse. Downside of having something classed as “incurable”.
I wonder what is really going on if she was fed up after only 2 days of chemo – I don’t think it was from any effect of the chemo but maybe preconceived ideas about chemo & alternative treatments held by her and/or her mother?
I have no psych experience but lots of adolescent experience as a high school teacher. She sounds on the immature side to me.
It’s possible that most of the police station turned up to collect her, but it could also be exaggeration. Crying in a closet is not a mature way to deal with the situation.
She shows no reflection on the consequences of her actions – she ran away but did not think about what would happen, so she came back. She admits to lying about treatment but doesn’t see the connection to her conditions now.
As for her description of the port placement – given the history and scrutiny of this case does anyone really believe she wasn’t informed before the surgery? Which means stripped of the hysteria what she is saying is ‘I was forced to have a surgical procedure I didn’t want and then I woke up.’ The way she describes it feels nasty to me, as if she is trying to paint the doctors in the worst possible light. But I suspect she’s reflected on this as little as on her other actions and I don’t think it was done maliciously. (If she really was not informed, I apologise completely because that’s horrifying.)
I think the way she has reacted is very understandable, she is in a horrible situation. But I don’t think her behaviour is adult-like, which is what she has tried to argue. I adore teenagers, but they are not adults. In some ways they are better and in others worse, and I don’t think anyone will disagree that their ability to understand the long term consequences of their decisions is not fully developed.
My concern is whether this will actually make her life worse. Orac has clearly explained the reasons for multiple courses of chemo in cancers of this type, and points out that any recurrences are likely to be harder to treat. At this stage it seems unlikely that she will consent to any further courses, even if she completes this one before turning 18. What are her chances if she only completes one course? Is this a case of hoping hard that something changes in the next 9 months and that she will come around, or are her chances of long term survival not going to significantly alter with only one completed course?
More than likely, when she turns 18, she’s going to run as far away from Conventional treatment as possible – and make it extremely less likely that she would return later down the road, if her Cancer returned or got worse…..
Nothing about this situation is good, unfortunately.
Well, if she manages to escape conventional treatment and find some woo to try (and die from), you know her mother will blame those few weeks/months (or whatever) of chemo (or other REAL medicine) for killing her daughter – rather than the fact that she encouraged her daughter to die by refusing conventional medicine for BS Woo.
Orac thanks for covering this I was wondering about your thoughts.
@juliar – good points
As a peds resident we had a teen refuse her last round of chemo for lymphoma after the prior two had resulted in neutropenia , sepsis and PICU admissions. A much different case but it made me wonder how one would treat a teen who refuses as Orac points out. Daily sedation??
As for the teen patient I had as a resident there was no resistance to her decission. A few years later I got to be her baby’s pediatrician.
JuliaR, #89 – agree completely, you spelt it out well.
She,of course, was informed about the reason for the (relatively) simple operative procedure for the place of the IV access port:
http://www.genesishealth.com/services/cancer/resources/education/ports/
I’ve mentioned several times that the actual treatment regimen for her cancer is six months start to finish. She will be three months shy of her 18th birthday in September, when she completes her therapy. The majority of patients do go into remission and if, at some future time, she needs additional treatment, she will be considered an adult under the law.
She, as far as we know, was not judged “incompetent”; she was judged not mature enough to make the decision to not undergo treatment at seventeen years of age.
Not if she requires radiation, it won’t be. If she requires radiation, it will be cutting it very close to get it done before she turns 18. It would require no complications from chemotherapy or radiation that delay subsequent doses.
As for the port, placing a port without general anesthesia (which I used to do all the time) requires a cooperative patient. If the patient won’t cooperate, then general anesthesia is required, and it’s a much bigger deal.
Julia R: Excellent post, thank you.
Okay, it’s a press release and it’s a different type of childhood cancer (ALL)…about children who, after bone marrow transplants with perhaps, at best, a 20% remission rate, were willing to try (and gave consent) for T-Cell therapy:
http://www.seattlechildrens.org/press-releases/2014/seattle-children-s-reprogrammed-t-cell-immunotherapy-clinical-trial–boasts-85–complete-remission-rate-in-children-with-relapsed-leukemia/
“….In the first phase of the trial, Gardner treated 13 patients with relapsed acute lymphoblastic leukemia using cancer immunotherapy. This phase was designed to demonstrate the safety and efficacy of cancer immunotherapy as a treatment for leukemia and to determine the optimal dose of engineered T cells to administer to patients. Of the 13 patients treated, 12 responded to the treatment and 11 achieved complete remission. One of these patients has since relapsed; the remaining ten are in ongoing remission. The second phase of the trial, which is expected to begin in 2015, will allow even more patients to be treated with what researchers determine is the optimal dose of reengineered T cells…..”
Orac, what percentage of adolescent patients would require radiation therapy…I couldn’t find a definitive answer (hence my reliance on the Wikipedia link up thread for the chemotherapy regimen).
We also have scant information about Clarissa’s port placement and the only information (from Clarissa) may not be reliable.
I’ve been with family members after short duration anesthesia for surgeries and multiple minimally invasive cardiac procedures (the DH), and he reacts quite bizarrely for a short period of time, which does not require restraints, because I am in the recovery room at bedside. Clarissa did not have that option to have her mother with her, IIRC.
It’s impossible to know whether she needs radiation or not without knowing her stage and the locations of the lymphatic tumors. However, most Hodgkin’s lymphoma requires radiation. Indeed, back in the day they used to treat low risk early stage Hodgkin’s with radiation alone if the tumors were in only one nodal bed. When it was shown that outcomes were better with chemotherapy, chemotherapy became part of the standard of care. My guess is that she probably does require radiation, but that’s just a guess.
About the port placement – she said she was “sedated.” Not that I expect she is aware of the difference, as a lot of non-medical people aren’t, but I don’t know that it is clear from any of this whether she had general anesthesia or just sedation. I don’t think there is any chance that she did not know what was going to happen, or what it would be like when she woke up. Is that very scary for anyone? Absolutely. Is it particularly scary for a dramatic adolescent? Definitely. This does not apply universally, but I often find that kids who are “school aged” (6-12ish) can be much more pragmatic and rational than the adolescent set. Many, many children have ports and other medical devices placed. We explain the procedure, why we are doing it, show them dolls and other examples, answer their questions, and usually they understand that this is to help them. But if you want to make it about an evil alien thing that sinister people have implanted into your body against your will, you make for a pretty good damsel in distress. And lots and lots of people will be sending you well wishes and thinking you are superspecial.
I doubt that she will refuse to cooperate with further treatments to the point of needing to be restrained or sedated with each radiation treatment, for example. It sounds like she is certainly able to understand the importance of lying still and the risks to other parts of her body if she doesn’t. But when radiation is performed on children who are too young to reliably lay still (lie still? crap), we do have to sedate them for each treatment, for their own safety. It’s not ideal, but it is safer than having them move during the procedure. This also applies for kids with developmental delays or other comprehension problems where they are just not able to cooperate.
I find it odd that people are arguing over whether she knew, didn’t know, etc., about the surgical procedure she was about to undergo. If she didn’t know/wasn’t told, that’s horrifying. If she did know and refused, that’s also pretty awful. Now, there may well be legal precedent for the situation, given that she is, in fact a minor. If she were 18, it would be neither moral nor legal, whether or not she suddenly becomes “mature” by that age. (I don’t know if anything super special happened on anybody else’s 18th birthday, but nothing did on mine. I mean, except that I bought some lottery tickets and a cigar.)
I’m not saying, by the way, that any of the doctors treating her are in any way bad people. They’re much closer than I to the situation, and I assume they’re doing what seems to them the right thing to do.
My general philosophical position, though, is that a person has the absolute right to refuse medical intervention; otherwise, medicine becomes something it really ought not be. The main issue in this case has more to do with the patient’s age and the ethical problems created by that, not with the general principle of informed consent.
“I don’t know if anything super special happened on anybody else’s 18th birthday, but nothing did on mine.”
Entirely true, and yet if we follow this reasoning why do we have an age of majority or specified ages for different things in the first place? Were you more qualified to vote the day you turned 18 than you were the day before? Did something special happen on your 16th birthday that made you safe and mature enough to drive, whereas the day before, when you were still 15, you weren’t? Did something happen on your 21st birthday that made you suddenly mature enough to handle your liquor, whereas the day before, when you were still 20, you weren’t?
“I’m not saying, by the way, that any of the doctors treating her are in any way bad people.”
Big of you!
“a person has the absolute right to refuse medical intervention; otherwise, medicine becomes something it really ought not be.”
Like what? Life saving?
I’d prefer sticking to an arbitrary age line for determining maturity over a subjective evaluation of it. The latter, no matter how it’s set up, has too much potential for abuse, politically motivated or otherwise.
Narad asked: “Has anyone ascertained whether the mother or the daughter came up with the chemo-toxins-gonna-killz-mah-organs routine first”?
lilady noted: “The mother (of course) claims it is solely Clarissa’s decision… Clarissa’s recent statement… is that it is her own decision.”
News accounts don’t address Narad’s question, because either: a) it is outside their peg, or b) there’s some legal/policy thing keeping that out of bounds. How exactly could a reporter determine that in a way suitable for publication? But they get pretty good ideas about these things, and you can read the tea leaves in the word choices they make, the things they say, the things they don’t say.
In this case, with mom and daughter having visited the hospital numerous times prior to the diagnoses, you can guess the staff there has a good handle on what’s what, but can’t talk about it on the record, and would involve a certain degree of speculation in any event. You can also guess they’ve shared some impressions/observations with the reporter from The Courant ‘on deep background.’
To my eye, all the signs in the way the story has been reported point to the Mom as the driving force. I would guess there’s no “smoking gun” moment where she ever said to Cassandra, ‘Honey, I’m afraid these chemo-toxins are going to kill you, so whatever you decide I’m behind you’ (nudge nudge wink wink). I would guess the building blocks of that concept had already been well lodged in Cassandra’s head over a long term of Motherly advice and input in home schooling.
The Courant reported:
First, why would the reporter pull and feature THAT quote? Second, that was not a PR statement, but and argument presented in court. IANAL, but I’d guess the CT AAG isn’t going to offer that up without evidence, which I’d further guess remains part of un-disclosed court records, though parties to the trial would be aware of it.
So bet on the Mom, and note the difference in the two phrasings offered by lilady (the missing adverb): “The mother claims it is solely Clarissa’s decision. Clarissa’s recent statement is that it is her own decision.”
lilady #101 suggests this intervention may well save Cassandra’s life before she turns 18 and can opt out. I sure hope so. However, I maintain that since the hospital and DCF must follow the rule of law, even if they were ‘scarificing’ Cassandra somehow to prevent a legal precedent that could lead to harm or death for any number of future child patients, this choice would be a moral imperative.
In the comments thread for the new story in The Courant, “acirenie” wrote:
In the same thread “BigJoe3” wrote:
There are 288 comments on the story. The vast majority of OPs being anti-big-government rants, absolutist assertions of ‘Parents Rights’, and subject-changing deflections to abortion controversies. A handful of posts are from former Hodgkins paients, all of whom support the State’s decision.
[For the purpose of allowing readers of this forum to engage in an analysis of how news stories are constructed, and how perspectives can be implied by inclusion, exclusion, ordering, attribution, word choice and other factors, I am posting below the key news feature from The Hartford Courant, regarding Cassandra C. which is behind a paywall and otherwise inaccessible for critique and commentary.]
•••••••••••••••••••••••••
Connecticut Supreme Court Upholds Ruling That State Can Force Chemotherapy On Teen
By Josh Kovner 1/9/2015 The Hartford Courant
A Connecticut teenager will continue to receive chemotherapy against her will and her mother’s wishes.
In an oral ruling, the state Supreme Court unanimously found Thursday that the question of whether Cassandra C., 17, of Windsor Locks, was legally competent or mature enough to reject life-saving treatment was sufficiently explored at two Superior Court hearings earlier this fall.
Those hearings led to temporary state custody of Cassandra and court-ordered chemotherapy to treat her Hodgkin’s lymphoma. The seven justices resumed their seats shortly after the 75-minute hearing, making quick work of the request by lawyers for Cassandra and her mother, Jackie Fortin, for an additional hearing on whether the teen qualified under the “mature minor doctrine” to reject treatment.
After Superior Court hearings in November and December, the state Department of Children and Families won temporary custody of Cassandra, and a six-month regimen of chemotherapy began at Connecticut Children’s Medical Center. Doctors testified at the lower court hearings that Cassandra would die without the treatment, and that her chance of survival and complete recovery with chemotherapy was 80 percent to 85 percent.
In a column for The Courant on Page A10, Cassandra C. described the past few months. “Words cannot describe what my life has become over the last few months,” she wrote. “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.
“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.”
At the court hearing, Chief Justice Chase T. Rogers asked at the outset what further evidence of Cassandra’s competency could be gleaned from an additional hearing. Lawyer Michael Taylor and Assistant Public Defender Joshua Michtom, who represent mother and daughter, respectively, readily acknowledged that there was ample opportunity at the November and December hearings to present a complete picture of Cassandra’s competency to reject life-saving treatment.
But Taylor said that the question of Cassandra’s overall maturity was not adequately examined, and that a further psychological evaluation was appropriate in this case. When Justice Richard N. Palmer asked Taylor how he would further attack DCF’s actions, Taylor, with a quick smile, said, “Your honor, I think we can think of something.”
Laughter rippled through the packed gallery in a case that has attracted national interest. When the hearing was adjourned, a woman with a poster announcing her opposition to chemotherapy approached the media throng in the grand court lobby and said that Cassandra deserved the chance to choose her treatment. The Connecticut Civil Liberties Union also filed a brief in support of Cassandra and her mother.
DCF was resolute in what it saw as its duty to act on Cassandra’s behalf. The lawyer for the department, Assistant State Attorney General John Tucker, told the justices that mother and daughter had indulged in “some magical thinking that, ‘If I closed my eyes to the fact I have this serious illness, then my cancer doesn’t exist.'”
“That’s DCF’s opinion,” countered Fortin, after the hearing. The unemployed house cleaner and caterer maintained that the decision to refuse chemotherapy was Cassandra’s, and that she and her daughter were pursuing an alternative treatment when DCF intervened. But the lawyers for the family didn’t bring that up before the Supreme Court on Thursday.
Fortin acknowledged that she personally opposes “chemicals and toxins” and would continue looking for an alternative treatment. She also said that her daughter “had lost her hair and is sick,” while Tucker, DCF’s attorney, said the home-schooled teenager was “doing well” and responding in typical fashion to chemotherapy treatment. The high court noted that Cassandra had run away after receiving her first two treatments, and that it would have been proper for the Superior Court judges to consider that behavior in assessing Cassandra’s competency.
In his argument before the justices, Tucker said it was DCF’s position that it was Fortin, not Cassandra, who was resisting the treatment, and that the child-protection agency had an obligation to intervene. “Really, it was the mother who was taking the front seat on this. The child was overshadowed by the mother’s negative feelings about chemotherapy,” said Tucker, adding that the agency specifically asked at the December hearing for a ruling on Cassandra’s competency.
In a statement through a spokesman, DCF Commissioner Joette Katz said the affirmation of the lower court decisions “will allow us to continue to provide the medical treatment that will save Cassandra’s life. This is a curable illness, and we will continue to ensure that Cassandra receives the treatment she needs to become a healthy and happy adult.”
Fortin questioned how removing a daughter from a loving mother was in the child’s best interest, and said she would continue to look for alternative treatment. Both sides in this unusual case agreed that the state would have no ground to interfere with Cassandra’s decision if she was 18 when she made it — nine months from now. Because she is a minor, Tucker argued, DCF had to take the role of “the adult in the room” when it came to Cassandra’s medical care. Michtom and Taylor have said that they do not fault the order from the trial judges or DCF’s actions.
Mother and daughter initially complied with the court order, and Cassandra received two chemotherapy treatments — but she then ran away from home and became a subject of a police-issued Silver Alert. When she returned home, Cassandra went back to CCMC, where she had had a portion of her lymph node removed.
Fortin said that doctors had “to strap her down on the bed” to do the preparatory surgery before resuming the regimen of chemotherapy. Fortin has said Cassandra believes that the chemical toxins could do more damage to her body than the cancer. Michtom said the question was whether, despite an encouraging prognosis, “a smart and knowledgeable 17-year-old (can) make the same choice, for better or worse, than she would be able to make without state interference nine months from now, when she turns 18.”
He noted that society permits children to be tried in adult court for certain crimes, or conversely, to be tried in juvenile court for the same crime, depending on the child’s history. He pointed out that minors may seek an abortion, receive addiction treatment or give blood without parental consent.
But the justices seemed resistant to the notion that it was up to the court to issue guidance or an “advisory ruling” on this question, or take action on an issue that was being raised for the first time on appeal. As of 2013, 17 states — but not Connecticut — had some form of the mature minor doctrine on the books, according to an article in the journal Pediatrics. But those laws generally grant minors the ability to consent to medical treatment against the wishes of their parents, while Cassandra’s case is a twist on that — seeking legal authority as a minor to refuse treatment.
The law in Illinois includes the right to refuse treatment, and Massachusetts has an exception when a mature minor opposes treatment on religious grounds. But the doctrine typically applies to medical procedures — such as abortion — that minors might seek without the approval or knowledge of their parents.
Interesting observation. I was just on Medscape, and there was a discussion of this case, as well as a poll. Granted, the poll wasn’t scientific, but 76% of the physicians who responded oppose forcing someone like Cassandra C to undergo chemotherapy against her will. Several of the comments were rather scathing.
@DW:
I wasn’t arguing against the age of majority. My point, actually, was that there is legal precedent to require Cassandra to get treatment, as she is still a minor, whether or not that’s morally the right thing to do. I was actually not arguing that 17-year-olds are always mature enough to make these decisions, but rather that being 18 years old doesn’t magically make anybody “mature,” either. Which is only to say that you can’t really base allowing her to make her own medical decisions on something like “maturity,” but rather that the safest best, legally speaking, is probably to base it on the age of majority. Again, whether or not that is the moral thing to do.
No, like coercive, to put it very mildly. Let’s say I’m 80 years old and I have, oh, let’s say, pancreatic cancer. I’ve decided that I’d rather have palliative care in a hospice or my own home and die in the way I see fit rather than spend my last years in and out of hospitals. Do you really think that, instead, I should be forced to undergo agressive medical treatment “for my own good?” I sure don’t. I’m arguing about the general principle here, not Cassandra’s case in particular. Let’s say we take 18 as the age of majority, cut and dried. If I’m over 18, then yes, I have the absolute right to refuse medical treatment. It is not the place of medicine to force treatment or intervention on me (or anybody else) if I refuse it. It’s my own GD business.
Is medicine a life-saving and admirable profession? You bet. Absolutely. But medical professionals cannot force treatment on an unconsenting adult. That way perdition lies.
JP, I think we agree then.
Of course elderly people shouldn’t be forced into treatment! The elderly, though, are in some ways a similar case and in some ways not. Unless there is dementia, an elderly person unlike a child is fully capable of understanding treatment options and obviously should make his or her own decisions. Also we can prepare things like advance directives or assign health care proxies to make our wishes known in the event we are not able to choose rationally at the end of our lives.
Because children don’t have those capabilities parents must take responsibility for them, or when parents fail, the state.
re: “Medscape, and there was a discussion of this case, as well as a poll. Granted, the poll wasn’t scientific, but 76% of the physicians who responded oppose forcing someone like Cassandra C to undergo chemotherapy against her will. Several of the comments were rather scathing.”
Wow. I guess you guys are pretty jaded.
This argument fails to sink HMS John Donne. Suppose you’re 80 and too poor to have your druthers.
@Narad:
Suppose you’re 80 and too poor to have your druthers.
You’re right. We certainly don’t live in an equitable or just world. While principles might be absolute – at least for me – we live in a relative world, and things can get sticky.
You don’t have to tell me about being poor. I’m lucky enough to have pretty good health insurance now, but I didn’t from the time I turned 18 until I went to grad school. (Only about 4 years, sure, but there were times when I sure could have used it.)
Sadly, in the US, at least, we don’t have the right to always choose the medical care we see fit. You could sure argue that we ought to, and that’s one of the reasons why I’m in favor of universal health care. We do, though, have the right to refuse medical care that we do not desire. That choice might be forced on us by financial circumstances, which, yes, is pretty freaking barbaric.
In which case it’s not really a choice at all, which, again, is pretty freaking barbaric.
I was just about to try to deobfuscate that comment, but I see you’ve got my drift.
How does this philosophical position not immediately reduce to à la carte medical care’s being a moral imperative?
I’m not sure what you mean – medical care, or the availability of medical care?
I’d say that, morally speaking, people should have access to health care, regardless of their financial position. It can get very complicated in practice, of course; if medical care is provided by the state, then a lot of things depend on the availability of state funds. You probably wouldn’t, and shouldn’t, be able to choose any medical care you choose, esp. if it’s not medically indicated. And, in that case, yes, we have to rely on the opinions of medical experts about whether or not something is medically indicated.
But one should always have the right to refuse medical procedures or treatment. It’s a different right, as far as I can tell. A negative right rather than a positive one, if you will, but still an important one.
If I have all my faculties intact, even if I’m young or middle aged, and there’s a medical procedure that I don’t want to undergo, for whatever reason I, in all my faculties-intact-ness, even if it could be life saving, then I ought to have the right to say “No,” and to have that “no” accepted. You can call it à la carte, I guess, but the right to refusal seems pretty simple and basic to me.
You seem to be asserting nothing other than that there is an ethico-moral principle that a person must be free to refuse all care. I’m failing to see how any weakening of the “all” leaves the proposition as anything but a platitude.
@DW #87 It’s not what she explicitally says, but what she implies. I have no idea how to put quote blocks and other stuff (does this thing use html?) so bear with me here.
“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.”
While she doesn’t say that she didn’t know she was going to have a surgery, the tenses for the verbs and the fact she orders the sentence so the reader finds out about the port after the words “I woke up in the recovery room” misleads the reader. Actually, that knowledge of how to change the wording of a sentence is highly emotional, and usually used to give a dramatic effect in books, which gives me more evidence about her developed skills to manipulate, lie and deceive. In conclusion, and being 17 years old myself as well, I find her to be manipulative, deceptive, immature and spoiled, not to mention the huge Dunning-Kruger she has (she’s too immature to realize she’s immature so she thinks she’s not), which isn’t surprising because, well, almost all of us 17 yrs old are like that. Anyways, she had to be told what she was taken for, and I’m almost sure she was told.
@JP #88 That word is “bias”. Or at least that’s the word I know. Don’t worry, is a common thing about humans to think of others as ourselves, and I’m sure it feels better to be naïve than to be suspicious to the point of being paranoid. I had to read her transcript with the worse of faiths only to avoid thinking she would be as honest or inocent as you or me probably are. But we agree with something: it’s a pretty sad story, that’s for sure. I hope she gets rational soon. I really do.
And on #107, we argue about it because it changes the course of the history. As far as I know, the career of her oncologyst can depend on whether they told or didn’t tell her about the procedure. Oh, and as far as I know, you are always sedated to have a port implanted, but I may be wrong there.
@juliar on both #89 and #106: That’s exactly what I was talking about. Needless to add anything there, it’s a reflection of what I had been trying to say this whole time.
@Deb #96 That’s the stuff that give her away in her testimonial. Being 17 myself, I know that we can’t fake maturity, or at least not well enough to deceive a trained or experienced eye
@JP: I don’t know how I managed it, but there’s a reply to #121 in moderation.
@sadmar If that’s the case, then my perspective changes. Maybe Cassandra isn’t the deceptive, manipulative, immature, spoiled teen I said she might be, but that only means that her mother is the recipient of said adjectives. In any case, the text and transcript show signs of said behaviors, and now the only difference is whether the person responsible for it is Cassandra herself, or she’s just a weak daughter who had her voice hijacked by her dominant mother, which makes it worse, because it’s Munchausen by proxy (or seems quite similar in my limited experience). If so, I pity Cassandra, for no one deserves to die of a lymphoma, or cancer in general. Actually, it seems more likely, since the “I got fed up with chem after two days” is completely off-base and false, no one with some experience in receiving appropiate chem can say that unless a exceptional case is in order, and this sure doesn’t look like it
@Narad (#122):
Well, yeah. When it comes down to it, a person should be able to refuse any and all medical care. Well, I mean, they shouldn’t have care forced on them by the medical profession. Their friends and family, as well as medical professionals, might well try very hard to convince them to accept care, as well they perhaps should, in a lot of situations. But ultimately, yes: an adult with all faculties intact ought to be able to refuse medical care. Any medical care, including palliative care, if that’s what they truly want. I have a hard time imagining wanting that, as dying of most diseases without at least palliative care would be a pretty grisly end. But it’s not up to me to decide.
I mean, the “informed” part of “informed consent” is also important. Medical professionals can, and should, certainly let somebody know just how grisly the end is going to be if they refuse all care. But it still isn’t ultimately their decision to make.
@112: “He noted that society permits children to be tried in adult court for certain crimes, or conversely, to be tried in juvenile court for the same crime, depending on the child’s history.”
The law does not, however, permit minors to be subjected to the death penalty, precisely because they lack the brain development to fully appreciate the consequences and moral weight of taking a life. I’m not sure why that answer should change as to Cassandra when the life being taken is her own.
@Narad, again:
I can think of situations where friends and family might even come close to “forcing” somebody into accepting care in ways that wouldn’t bother me at all. Somebody’s significant other might say, for instance, that they will not be able to support them through death from a disease with X, Y, or Z form of medical care. But that’s still basically a personal matter and not the same as medical professionals or the state requiring care.
Argh – “without X, Y, or Z form of medical care.”
@JP:
I have been trying to point out that these two words have different implications. As far as I can tell, it becomes necessary to engage in self-defeating contortions such as boxing off the meaning of “care” to preserve the former within this simplistic construction.
On what scale is one supposed to be morally entitled to refuse something? CPT codes?
Consider a DNR. For that matter, consider, e.g., this:
“The statute defines ‘extraordinary means’ as ‘any medical procedure or intervention which in the judgment of the attending physician would serve only to postpone artificially the moment of death by sustaining, restoring, or supplanting a vital function.'”
Now, I’m not that far removed from being present when a DNR played out; enshrining these words in N.C. Gen. Stat. obviously does not clarify much of anything.
You have cancer in your lungs. Respiratory acidosis. You’re terminal in any event, but you were responsive 12 hours ago and just might come around for a while if you make it from the ICU to hospice, and the BiPAP has your O2 saturation >90 for the time being.
Is morphine to take a load off your heart an extraordinary measure? Suppose you’re briefly asystolic but come back on your own: what’s the status of the BiPAP?
I’m not really seeing “any and all” as amounting to more than a slogan that’s disconnected from any practical consideration of autonomy.
You have cancer in your lungs. Respiratory acidosis. You’re terminal in any event, but you were responsive 12 hours ago and just might come around for a while if you make it from the ICU to hospice, and the BiPAP has your O2 saturation >90 for the time being.
Is morphine to take a load off your heart an extraordinary measure? Suppose you’re briefly asystolic but come back on your own: what’s the status of the BiPAP?
Well, if you’re unconscious, I don’t think you’re in too much of a position to refuse anything, unless you do have a DNR. Is morphine to take a load off your heart an extraordinary measure? Not being a trained medical professional, I’d have a hard time saying. I put a certain amount of trust in people who are trained medical professionals to make these judgement calls in the moment, human as they are.
Well, if you came back right away, I’d say carry on with the BiPAP, but again, I am absolutely not a trained medical professional and admit my ignorance as to all the technical details involved. I don’t even have any personal experience with a DNR; when people I love have died, it’s been pretty cut and dried. My dad shot himslef 16 years and a couple months ago, and was utterly DOA. My uncle Roy did the same 4 years before. A good friend of mine who was in his 60s died this past September of a massive heart attack; his wife called 911 and he went to the hospital, but there was nothing really to be done, and he died a few hours later.
The philosophical point I was making was about a patient who is conscious and able to give or not give consent to a medical procedure, like open heart surgery or any number of other things, life-saving or otherwise. One certainly has the right to refuse medical care if one is conscious and able to do so.
I’ve given brief moments of thought to preparing an advance directive for myself, but it seems a bit morbid to do so at the ripe old age of 27. If at some point I am old and in poor health, I know that I don’t want to be subjected to CPR, for instance, in an effort to prolong my life, even if there’s a very small chance it might grant me an extra year or so. If I’m ever “brain dead,” I don’t want to be kept alive artificially. But that’s only concerning myself, and those are pretty obvious things, I guess. I’m nowhere near medically trained enough to make tough, subtle judgement calls about what are or are not heroic measures in the case of somebody who’s unconscious, nor do I delude myself into thinking I am.
Right, you’re simply moving the problem to within boxes that are ill defined. Let’s try this one instead:
You desire arthroscopic knee surgery. Your anesthesia choice is a nerve block. However, you “refuse” intubation should the block prove inadequate to completing the procedure.
What are the odds of a surgeon indulging that whim who isn’t being paid cold hard cash? Pretty poor, I’d guess. Would that situation also be “barbaric”?
What I was referring to as barbaric is the lack of the ability to choose medical care at all.
Here’s a hypothetical situation: It’s 2005, the ACA doesn’t exist. You used to have Medicaid, but you recently turned 18 and don’t have it anymore. You have leukemia and no medical insurance, and no money to pay for medical care. You die. That’s barbaric.
Here’s another situation: You have a mental illness, which counts as a pre-existing condition, and the ACA doesn’t exist yet. You can’t manage to get health insurance because of your pre-existing condition. You get the flu, get pneumonia, and don’t go to a hospital because you have no health insurance. You die. That’s barbaric.
Jesus, I’m a definite believer in SBM. I’m not your f***ing enemy. Does a patient have the right to have every “whim indulged” by an MD? No. You can’t force an MD to engage in the surgery mentioned above if they know it might kill the patient and they don’t want that on their hands, either. Does a person have a right to refuse medical treatment in general, even for something that might kill them, even if it means not availing themselves of the health care system at all? Yes.
“The mature adults I know who are in chemo welcome the opportunity to have a port so the nurses won’t have to start a new IV in the arm for every treatment. Cassandra’s use of the port placement as an example of how horribly they’re treating her is another example of her immaturity, IMHO.”
I consider myself a mature adult. Getting a port put in was the most traumatic part of my entire experience treating invasive breast cancer. I could elaborate, but for comparison, I also underwent a lumpectomy, egg retrieval, bilateral mastectomies, and a swap-out surgery for reconstruction. Out of all that, the port insertion (with conscious sedation), was the surgical experience which left me the most shaken, and is also the one I would put last on the list if I was forced to relive it.
I had the port itself removed with my bilateral mastectomies, and still another 9 intravenous treatments (Herceptin) to go. I hated it that much. I much preferred getting stuck with an IV once every three weeks, for 7 months, instead of having the port in 24/7.
Being forced to undergo surgery is horrible. I’m not saying what they did was right or wrong, but she is absolutely entitled and justified to feel traumatized by that experience.
It is the MOTHER who should be isolated and deprogrammed from her cultish thinking about medicine vs. pseudo-medicine. This whole thing hangs on the concept of INFORMED consent. That is the issue. What to do in cases of UNinformed consent is where the dilemma enters.
How is this different from putting someone in a psych ward without consent when they are threatening to harm themselves?
I’m late to the party (heat was out on Friday), but I have a few thoughts:
1. I can’t help finding it ironic that of all the times and all the ways we’ve seen this situation play out, *this* is the time when the state decides to draw a hard line. With a fully competent (if immature and/or brainwashed; these things are unfortunate, but not grounds for a declaration of incompetency) 17-year-old whose wishes are in accord with her parent’s, however foolish. I realize that those were different governments with different agendas, but still: Where was all this hard-nosery when we needed it?
2. FWIW, I think “lifesaving” in the sense of “granting you a few months or years, but the cancer will still get you eventually” is dramatically different from “lifesaving” as in “more likely to live to a ripe old age and die of heart failure than to expire from (this particular) cancer”. Correct me if I’m wrong, but my understanding is that Cassandra’s 85% odds of survival refer more to the latter than the former. This isn’t just “die in agony now or die in agony later,” which is how her letter treats it. This is more “die in agony now or suffer for a few months and then go on to live a happy, productive life.” Even if the treatment only gives her another 15 years, we’re talking about doubling her lifespan. That’s not something you can write off under “dignified death”.
3. I keep having that creepy song “Mother Knows Best” from Disney’s Tangled playing through my head as I read this story…
MM – “the port insertion (with conscious sedation), was the surgical experience which left me the most shaken, and is also the one I would put last on the list if I was forced to relive it.”
Point taken, but remember Cassandra was NOT conscious when this was done.
It seems to me a sign of her immaturity, that numerous kindnesses have been done her that she does not recognize, but perceives as offenses to her.
Isn’t this issue really simple? Of course adults should have the right to refuse care. Adults do this all the time. (Speaking as the daughter of a mother who refused all treatment for breast cancer, I know whereof I speak.)
But children simply do not have that right, because adults are responsible for their wellbeing. Cassandra is legally a minor. It’s that simple.
If we want to say children also have a right to refuse treatment, well, that would be the end of vaccines, wouldn’t it? No sane child under about, say, 10 or 12 would ever receive one. Almost all children who got cancer or any other serious diesease would die of it, given the “right” to say no to any treatment they found scary or unpleasant.
You’re right that legally, the situation is pretty clear; Cassandra’s a minor, and can legally be required to undergo treatment. I might find that fact morally questionable, and I might find some aspects of Cassandra’s treatment, or at least the way she describes it, disturbing on some level. That doesn’t change the legality of the case. Morality and the law are two different things.
Part of the difficulty, I think, hinges on language. Based on the legal definition of the word “child,” which simply means someone younger than the age of majority, Cassandra is indeed a child. It’s hard to call her a “child” in any other sense the word is used, though. Commonly, someone is considered a “child” until they go through puberty, or reach about age 13/14, or, in some cases, until they go through a rite of passage like a Bar or Bat Mitzvah. In terms of common usage, a 14 year old is certainly much less of a child thana 6 year old, and 17 year old even less so. But again, that doesn’t change the legal definition of who is a child.
In terms of biases, I’m also coming at the situation as someone who was living independently as a teenager, but I have to remember that my experience was really unusual. I mean, I also have an almost pathological fixation on independence which is probably a permanent personality trait at this point which I need to examine on occasion. Just ask anybody I’ve ever dated.
I don’t think anyone is disputing the legalities here. Clearly, they *can* compel Cassandra to do anything they want while she is underage and not emancipated. Whether they *should* is another matter. Or in this case, since they already have, should we applaud them for it?
As someone above might have said already, one does not receive maturity as an 18th birthday gift. But one does receive legal competence (as opposed to incompetence, associated with minor status and mental disability), with all the rights and responsibilities that go with it. From the moment you turn 18, you are supposed to be responsible for your decisions. Before then you may get a voice, but the final authority rests with someone else–parents, guardians, The State, whomever. How much voice a 17-year-old should have is the question.
Treating an otherwise healthy, competent young adult like a recalcitrant child makes me wince as a matter of principle. She may be acting foolish enough to deserve such treatment, but in a matter of months she’ll be responsible for her own wellbeing whether she’s ready for such a responsibility or not. Or maybe she’ll be dead. But it’s kind of hard to swallow such a literal interpretation of the law, especially when it calls for the imprisonment of someone who hasn’t actually committed a crime.
All that said, a large part of me is more than willing to swap a few months of hell for the privilege of getting to look back and hate it years later.
ObAnecdote: Reportedly, as a small kid I’d consent to about anything if told the doctor said it was good for me.
Actually, that was me. Similarly, I did not receive the birthday gift of being able to hold my liquor on December 30th, 2008 – just ask the friends who took me out. I did, though, receive the legal right to buy and possess alcohol, and to walk into a bar and order a drink, which I did not have even the day before, silly as liquor laws and the drinking age in this country seem to me.
Right: it makes me wince, too. Hard. Even describing her as a “child” seems kind of off-base to me, even if it’s a legal fact. While the legal recogniction of adulthood is cut and dried, “maturity” itself is something that develops gradually over time, and obviously an 18 year old doesn’t have a lot more of it than a 17 year old.
I guess here’s how it boils down for me: I ultimately don’t have enough information about the case in order to have an opinion on how much of a voice Cassandra should have. All I have to go on are brief news articles, and a video of Cassandra’s mother. As I’ve mentioned before, I tend to give people the benefit of the doubt. Maybe it makes the world a less painful place. So I assume that there are vital things about the case I don’t know, because I’m not close enough to the situation or not privy to certain information, or both, or something else. It would be very uncomfortable indeed to assume this is a simple case of doctors and nurses essentially forcing treatment on a competent teenager just because they can. So what I’m assuming, instead, is that there’s something more to this case than what I’m seeing.
“Morality and the law are two different things.”
Sometimes. In this case the legal course would also seem to be the moral course. Or do you have a counterargument?
Just because something’s the moral choice doesn’t mean it’s going to be the easy, obvious, or painless or that there are no counterarguments. Lots of counterarguments have been raised here; namely, she’s so close to adult that it all seems rather arbitrary. But no argument that I’ve seen has rebutted the fact that we specify particular ages in this manner for exactly this reason. The specified ages are there precisely to offer guidance in borderline situations. We say “18 is the dividing line” PRECISELY because some 17.75 year olds are more mature than others. Following the specified age guidelines is the right choice her, I think; or if someone has a counterargument to that – other than they don’t feel comfortable with it – I’d like to hear it.
Well, there is this summary of an article by Laurence Steinberg that I found on the APA’s website. An excerpt:
So in some ways we’ve got it backwards a society: 16 year olds shouldn’t be tried for crimes as adults, since they lack the psychosocial maturity that adults have, but they might well be able make their own medical decisions.
Of course, there is this quote to consider: “Rarely are these decisions made in the heat of the moment without consultation with adults.” The adult with whom Cassandra has had the most consultation may be an eminently unreliable consultant.
@ Diego #123 / #125:
Yeah, that Op-Ed is a gold-mine of language manipulation, and especially revelations from what is NOT said. Good take on the sentence ordering. You can see similar things in the news story — minus the emotional manipulation, and going in a different direction. Again, there are things to be discovered by comparing the said and the not-said-(but-might-have-been).
One of the comments in The Courant was from an ultra-conservative “parents rule and keep big government away from MY kids” type, who wrote “I stopped reading this after the first paragraph. Without reading further, I’m confident I know where the authors were leading readers.” So what is the indicator of ‘bias’ to this reader? What would have been ‘objective”? The ‘bias’ is the end of the sentence, which indeed another (bad) reporter might have left off:
“A Connecticut teenager will continue to receive chemotherapy against her will /// and her mother’s wishes.”
Spin this ‘for Cassandra’ and you can write it so Fortin doesn’t get mentioned until the 10th paragraph. And you don’t write that as:
You don’t mention Fortin’s employment status at all, much less use it a sentence subject instead of just “She…”.
The Courant story is an excellent example of why there is no such thing as “objectivity” in news reporting. From the view of a ‘parents’s rights’ advocate, that bit of info about Fortin is gratuitous and defamatory. From the view of “acirenie”, it’s woefully inadequate to suggest Fortin’s role and motivation, and occurs way too late in the piece.
It’s all but impossible to take the journalistic actors out of the equation, and see through to some kind of “reality” behind. We have the Op-Ed signed by ‘Cassandra’. It says what it says: ‘manipulates’ information the way Diego says it does. But who actually wrote it? How manipulative was the intent? A good guess would be that language of the printed Op-Ed was shaped by at least four people: Cassandra, Jackie Fortin, one attorney representing Cassandra, and one attorney representing Fortin. We would need to have been there at it’s drafting to know who was responsible for what, and magical mind-reading powers to know whether those contributions expressed sincere belief, or conscious Machiavellian spin.
The news article as well presents a degree of problematic authorship. The original copy submitted by reporter Josh Kovner would have been subject to changes by at least two editors. At newspapers, editors, not reporters, write headlines as well. Kovner might not have had “…and her mother’s wishes” in the lead, and an editor might have put it there. Or Kovner might have had “unemployed house cleaner and caterer” a lot closer to the top, giving it more emphasis, which an editor felt unwise and then lowered in the story. Or a hundred other possibilities.
Diego: I am damn impressed that at age 17 (17!) you have the skills to unpack the language of that Op-Ed. I don’t know if you’ve considered taking that up in school, but I think you’d be good at it. Even if you intend to focus your studies in the sciences, you might want to look into course-work in media studies / semiotics / blah blah blah on the side — depending on how those things are taught, which varies a lot from school to school such that you might find offerings under those rubrics really interesting, or utterly useless.
One of the things those disciplines usually teach is that what the text actually means in practice is more significant than the ‘why’s that existed in the minds of the authors. The Courant has a large readership, and what it’s readers take away from the Op Ed will affect how they act as citizens to influence a vareirty of social issues in CT, not just medical policy. When you wrote the quote below, you might have ended at the break I’ve inserted, as you’d already nailed the nitty-gritty:
I’m not sure that difference makes much difference. If the deceptive, manipulative, immature, spoiled behaviors in this moment can be traced to ‘Cassandra’, how do we imagine she came to be that way without considering 17 years of influence by a dominant mother who fed her who-knows-what nonsense in homeschooling? How is it worse if Fortin usurped her daughter’s voice just now, or over a long period of time — or if Fortin isn’t even the active agent, but just a channel for some larger ‘toxic conspiracy’ paranoia? One way or the other, there’s a 17 year old kid who may lose what could otherwise be a long rich life to a highly treatable cancer, and as you suggested #123 that would seem equally sad regardless.
I’ve opined that under the law, the hospital and the State’s responsibilities to “the greater good” define a moral imperative that far outweighs any moral imperative they may have to Cassandra as an individual in this case. I’m a bit surprised the discussion has focused on the moral imperative to the individual, given the public health focus of RI on matters such as VPDs and vaccine exemptions.
But I’ll take a stab at the debate about individuals anyway…
“Morality and the law are two different things,” only in the sense that the law must implement practical means to arbitrate complex moral issues, which may result in misapplications in specific cases. However, the discussion of “should” here is clearly broader than that, and the possibility the law may indeed be ‘wrong’ in some general sense is on the table. So IMHO, to address this, we take the practical aspect of law off the table and ask ‘under what conditions would it be immoral for an authority to impose medical treatment against a patient’s will?’
And it strikes me that chronological age has very little to do with the question directly. I think the terms of framing-by-age have sucked DW into a statement she wouldn’t actually support: “Of course adults should have the right to refuse care.” My guess is that DW’s position would actually be “Of course competent adults should have the right to refuse care.” The quote as written presumes competence comes with adulthood. Here we see the debate bound by those pragmatics of legal procedure: as the discussion turns to whether a 17 year-old could be considered ‘an adult’ outside of the pragmatic policy demarcation set by an 18th birthday.
But the 2nd paragraph of the Courant story says:
Here “mature” is not a measure of chronological age, and is just another term for “competent”, If at age 30, I somehow remain too immature to make a sound decision to reject life-saving treatment, then basically I have a psychological competence problem, yes?
So the morality of individual intervention revolves around the issue of competence, and thus plunges us into murky waters of psychology and philosophy: How does anyone decide these things? But how can a moral society avoid making such decisions if the deaths of incompetents result?
Not surprisingly then, the comments above have touched on suicide. Roadstergal asked: “Do we allow teenagers to kill themselves’? If someone is a suicide risk, is there precedent for restricting their freedom?” The answers are ‘No’ and ‘Yes’, and moreover we only allow adults to kill themselves (as opposed to letting themselves die) under very restrictive conditions (c.f. Brittany Maynard). We give authorities the duty to intervene in suicide attempts due to presumption these actions may be the product of mental illness. Indeed, research has shown that a significant percentage of suicide attempts are impulsive, the product of transitory mental states, and that individuals prevented from impulsive suicide by physical intervention rarely make additional attempts to end their lives.
Of course, ‘short-term incompetence’ represents an easy call for the morality of intervention — not just in suicide prevention but prevention of lasting harm in medical decisions. Some folks would argue the waters muddy considerably in the case of long-term conditions. Is someone who has suffered a debilitating depression for 15 years, and sought out every available form of medicinal and talking therapy to no avail justifed in ending their life to remove an abject misery that will.not.go.away?
That was me eight years ago, and I came out of it for some reason. Could I have passed a competency test? If so, would I have actually been competent? Those aren’t rhetorical questions. I don’t have a clue. I was about 53 when my long-term on-and-off suicidal ideations finally passed the tipping point to forming a plan. By the time I had the basic outlines it was late, and I went to sleep — I wasn’t in a hurry — sometime in next few weeks maybe. When I woke up the next morning, I was like, ‘WTF were you thinking!’ and I never had another suicidal ideation again. The depression hung around for awhile longer, but then eased on down the road and has not returned. So, yeah, I’m not too big on assuming anyone knows WTF they’re doing with their lives.
But the non-minor-child, non-cancer case that popped immediately into my head when thinking about how Cassandra may be considered incompetent because Jackie Fortin is pulling the strings (which is what the CT court appears to have concluded) is the story of Brian Wilson.
Some older Minions may know the tale. Pop music genius, creative force behind the Beach Boys, auteur of the acclaimed pop masterpiece “Pet Sounds”, Wilson had severe psych issues stemming from his relationship with his at-least-mentally-abusive father, further complicated by drug abuse. (Murray Wilson is alleged to have caused his son to become deaf in one ear by striking him in the head with a baseball bat at age 2).For two years after his father’s death in 1973, Brian Wilson was a recluse, “secluded in the chauffeur’s quarters of his home” leaving only to commit various forms of self-destructive behavior with other drug-besotted musicians.
In 1975, Wilson emerged from seclusion, began working in the studio again, and his record company launched a “Brian’s Back!” campaign to promote a Beach Boys greatest hits album. The music press soon discovered, though, that the services of a ‘radical psychotherapist’ named Eugene Landy had been engaged to treat Wilson, and it was under Landy’s ‘guidance’ that Brian had come back to the outside world.
Or had he? In fact, was Brian still even there? Landy had put Wilson into “unorthodox 24-hour therapy, involving control of ‘every aspect of [his] physical, personal, social and sexual environments’.” Some of Wilson’s old friends described him as a “zombie,” in the Haitian sense of a corpse reanimated by black magic, under the control of a ‘boku’ as the sorcerer’s personal slave, having no will of their own. In 1977 the band dismissed Landy over a fee dispute, only to discover that Brian’s limited resumed activities had been completely dependent on Landy. Unable to function without his boku, Brian reverted back to seclusion, his weight ballooned to 340 lbs., and everyone around him feared he was about to die. So, the band brought Landy back to run Wilson’s life in 1983.
Or did most of his thinking. Landy’s ‘practice’ became Brian Wilson and Brian Wilson alone. Landy ‘co-aurhored’ Brian’s songs, ghost-authored his ‘autobiography’, become his business manager, had himself named beneficiary in Brian’s will, enriching himself to the tune of several millions of dollars in the process. Wilson remained under Landy’s control until 1992, when he met wife-to-be Melinda who eased him out from under Landy’s influence. Wilson’s mother and the band were thus enabled to win a lawsuit barring Landy from any contact with Brian.
I am not suggesting Jackie Fortin is her daughter’s boku. I’m not even talking about Cassandra C.’s case. I’m just suggesting that the morality of medical interventions comes down to the competence of the patient, and that for patients of any age, the effects of previous non-medical interventions of various sorts can’t be ruled out of the equation.
Just as a sort of aside, I’d say that’s putting quite a bit more faith in the law than I have; but then, I used to be an anarcho-syndicalist. In an ideal world, or even a relatively sane country, I agree with you. Drop me in Russia, though, or worse, North Korea or Iran, and there are going to be quite a few laws that I find distinctly immoral. Breaking them can still get you at least a few very unpleasant years in a very unpleasant prison with no legal recourse, because you did, in fact, break the law. Even in this great country of mine, I’d say that at least the enforcement of some laws verges on immorality – I’m thinking of the “war on drugs” here.
I’m glad to hear you made it out of your depression somehow. I’m bummed that you don’t know how you did it, ’cause I wouldn’t mind knowing.
When it comes to competence in the case of a suicide attempt, here’s my anecdote: I tried to kill myself a couple years ago, and failed, because I suck at it. I got up the next morning, and went and taught my 9 am Russian class as usual, because… I don’t know? I had to go to work?
It actually took me a few days before I brought it up to somebody. Said somebody sent me straight to the psych ER. They took all my stuff away and put an alert braclet thingy on my wrist and everything. I don’t know if I could have actually passed a competence test or not, because they didn’t give me one. Here’s the kicker, though: they wanted to keep me there over the weekend, but somehow, I managed to talk them into letting me go home to my apartment where I live alone. I am a Very Good Talker. It seems to me that you have to be judged to be extremely incompetent, or utterly out of touch with reality, in order to be involuntarily held. (As an adult, anyway.) Or, I suppose it could just be that I’m very smart, very charming, and very good at Pretending To Be Okay, all evidence to the contrary notwithstanding.
I mean, I guess in hindsight I’m glad I didn’t die back then. Sort of. I’ve been a little less sure lately.
God. I’m sitting in an airport in Las Vegas and it’s a totally surreal place. “Buy the ticket, take the ride,” indeed.
@JP
I wasn’t attacking you, I was trying to point out that a moral formulation of a right to refuse “any and all medical care” only sounds simple. That’s why I offered CPT codes as one example of a level of granularity.
JP,
That seems highly plausible, judging by your comments here. I have been close to two people, both highly intelligent, who seemed very unwell to me (I’m talking serious delusions in both cases) but who, to my surprise, convinced a counselor and a doctor respectively that they were OK. One recovered after a few months, the other later ended up in a secure psychiatric unit after things went very badly wrong. Healthcare professionals are not infallible.
You have my sympathy. I’ve been there, more often than I would like. The best advice I can give is to ride it out – it usually passes or gets less intense eventually – and please, get some help, even if it’s just talking to a friend about how you feel.
It may sound silly, but wondering what happens next, with friends, family, the human race, the planet, even my favorite TV show, sometimes helps me, the thought of not knowing bothers me and stimulates my survival instinct. YMMV of course.
Also, be aware of your internal dialog. Sometimes we get into the habit of supplying ourselves with a morale-destroying voice-over to our lives that we cease to be really aware of. If you have Marvin the paranoid android in your head constantly asking you what the point is, or telling you you are no good, it brings you down. Again it may sound trivial but being aware of this and changing it sometimes helps me, though at other times my internal dialog seems to fall almost silent when I’m depressed.
Low blood sugar makes depression worse and I tend to skip meals when I’m feeling low, which leads to a vicious cycle. Exercise, particularly swimming, used to help me immensely for some reason.
Finally, the adage that depression is anger turned inwards is sometimes accurate. Is there something in your life you are very unhappy about, but don’t want to admit to yourself? I’m thinking of a time when I was in an abusive relationship, but didn’t want to face the trauma of extricating myself, so I stayed with it and got very depressed indeed. On that occasion a course of antidepressants helped me to see things more clearly and sort my life out so I was then able to quit the antidepressants.
I’m not a psychiatrist ; I’m just casting about for things that have helped me when I’ve been in a similar position. If they are obvious and you have tried them already I mean no offence, I just know how unpleasant depression can be and want to help.
It is the MOTHER who should be isolated and deprogrammed from her cultish thinking about medicine vs. pseudo-medicine.
I think she should also be put under oath and asked whether her opposition to having poison and toxins in her body extends to Botox. Because appearances sure suggest that it doesn’t.
But maybe she gets Restylane.
DW @145:
Right, and then we waive the requirement of law if the minor in question is deemed to be a member of the former group (“mature minors” laws), and enforce the age provision upon the latter. That judgement call is the reason we have justice administered by courts and judges and not by computer algorithms. It’s messy and subjective but it’s the best way we’ve found so far to handle the messy subjectivities of life. It’s the same system that allows a police officer to let you off with a warning or a jury to recommend the death penalty. Mitigating and aggravating factors are part of life.
Not saying that Cassandra’s situation calls for such an exception, but I don’t think blindly falling back on the letter of the law mitigates the ethical concern. Like JP, I don’t think I have enough clear, objective facts to make a call from this side of the computer screen. And the decision not to award Cassandra with mature minor status was probably correct, but again–not enough data.
Although, perjury IS a crime, which she basically admitted to in sadmar’s post of the op-ed. So maybe the imprisonment is justified after all.
It may be legal to treat her involuntarily, but as Orac pointed out, you functionally can’t treat her without her cooperation–unless you resort to restraint, sedation, and isolation over a period of months (not days, as would be typical for things like acute suicide risk), which walks a *very* thin border of cruel and unusual (based on what I think I know about solitary confinement rules). Cruel and unusual is illegal, per the Constitution (if I’m remembering my US Government class correctly). So you do have a very real potential legal conflict here, and I submit that this is the flag that makes the “discomfort gambit”, as I’ll call it, carry some actual weight. Treatment that makes you uncomfortable should at least be checked for “cruel and unusual” factors.
Yes, I agree, the “mature minors” caveat softens the hard line stance regarding her exact age. And in this case, after going through that full process it was concluded that she is NOT a mature minor. What more would you want? Of course “on this side of the computer screen” we can’t judge, personally; we’re all just reading the news articles and offering our take, but it certainly looks like all manner of precautions have been taken to be sure that all her rights and needs are being respected as fully as possible.
“So maybe the imprisonment is justified after all.”
Imprisonment?
“Treatment that makes you uncomfortable should at least be checked for ‘cruel and unusual’ factors.”
Yes. In this case it has been.
Certainly it would be best if more diplomatic efforts were made to help her to understand, help her see reason, and to help her mother to understand why her own actions are so unhelpful, though it seems like that has all already been tried. But in the end I still come down in favor of requiring her to undergo the treatment for her own good.
Cruel and unusual is illegal, per the Constitution
Scalia, I believe, has defended the freedom of a state to treat its citizens cruelly and unusually as long as it’s not punishment.
@Krebiozen:
Thanks. I appreciate it. Most of those things, have, indeed, occured to me, though it’s usually good to hear them again as a reminder.
When it comes to being curious about what happens next, that can get a little twisted for me, since I spend most of my life waiting for the other shoe to drop, so to speak. I worry about completely unlikely bad things happening, like, “What if I get evicted from my apartment for no reason?” “What if the University finally sees through my facade and decides they were crazy to ever let me into graduate school and they kick me out and I have no job?” And so on. I think this sort of anxiety and catastrophic thinking is common among people with PTSD, which is another diagnosis I have on my chart somewhere. (Although when you’ve been through as many awful things that you had no control over as I have, the thought that more things like that happen doesn’t seem so crazy after all.)
What bascially happened is that I took myself off of the antidepressants that I’d been taking for years this summer. The psychiatrist I was seeing thought I should probably be on them indefinitely, given my history, and I didn’t really like the idea, so I eventually went off and did things my own way. Then, in September, someone I was really close to died unexpectedly. I kept getting sick, like bad bronchitis-type stuff that wouldn’t go away, too. Add that to suddenly not having the structure of teaching or taking classes anymore, and you have the recipe for a major funk. I thought that going back to the Northwest to visit for a few weeks would help, but for some reason, I think it kind of made things worse.
I actually feel a little bit better being back “home” in the Midwest, actually. I felt an odd joy at being back in my own little apartment and sleeping in my own bed – maybe just being in a familiar environment that I have some control over.
And my friend Vlad is back in town after an 8 month absence, which is fantastic. It’s sort of funny that one of the people I’m closest to in the world grew up in a literal war zone (Bosnia).
But you’re right, I do need to get some help. I plan to do that now that I’m back in my insurance network.
@ JP:
I’m glad you’re doing better: you have much to contribute both here @ RI and elsewhere.
@ sadmar #112 —
“[For the purpose of allowing readers of this forum to engage in an analysis of how news stories are constructed, and how perspectives can be implied by inclusion, exclusion, ordering, attribution, word choice and other factors, I am posting below the key news feature from The Hartford Courant, regarding Cassandra C. which is behind a paywall and otherwise inaccessible for critique and commentary.]”
“Allowing readers of this forum to engage” falls well outside any valid reason to violate not only general copyright principles, but the paper’s explicit paywall protecting its work product. Next time, try seeing if the Courant allows Google links through its paywall. What you did is defined not by “fair use,” but “theft of services.”
What paywall?
Hey, Sadmar stated he thought he was defeating a paywall. That’s certainly evidence of bad faith in reproducing the article in full. *shrug*
But it was in the name of allowing “us” to
“engage in an analysis”attend properly to his own, so it’s all cool.Scottynuke: actually, I knew it wasn’t a paywall per se, but I had to go though a registration sequence with several steps to get to it, which seemed to offer perhaps only limited access, so I figured people wouldn’t go through and read it. It belongs in the thread. And unless you’re a U. S. Attorney in my District I couldn’t give a rat’s ass about your interpretation of the Fair Use doctrine, about which I probably know more than you do, unless you’d care to cite case law pertaining to this specific situation. And on the political philosophy of ‘IP’ I would whoop your corporate-capitalist suck-up ass so bad you wouldn’t be able to sit down for the rest of this century if i cared to take the time, which i sure as hell don’t.
However, I’ve had this page open all day, trying to find words to express my reaction to seeing your comment #159 under JP #149, Kreb #151 and JP #157 — a topic started by my #148. I cannot come up with the right ones. I could borrow a line from Lennon and ask “How do you sleep?”, or from Marx and ask ““Why don’t you bore a hole in yourself and let the sap run out?” Or call you a Bozo who got on the wrong bus. This will have to do I guess: https://www.youtube.com/watch?v=PaFLezxS1tA
Well, that makes one of you.
@JP #149
I’m still an anarcho-syndicalist! Sort of. Philosophically. So by trying to frame the moral equation of the hospital acting under the law, I meant to imply no faith in law per se. So in #148 I was trying to take law off the table to pose, ‘under what conditions would it be immoral for an authority to impose medical treatment against a patient’s will?’ And “authority” was probably the wrong word. I.e. the question would still be relevant in an anarcho-syndicalist commune where workers take turns to act as a sort of executive-officer-for-the-week, but all the decisions *of* that officer have to be ratified at a special bi-weekly meeting by a simple majority, in the case of purely internal affairs, but by a two-thirds majority, in the case of more major.. HELP, HELP, I’M BEING REPRESSED!
So, you know, whoever could make a choice to impose a treatment by whatever means…
………………
From the Little Red Songbook of the IWW
I fail to see how your set of cockamamie excuses for failing to just provide a link to the original item isn’t “on topic.”
There’s no registration requirement. Recall that you’ve pulled this routine twice, the only difference being that
Jesus said you will die if you stay hereyou couldn’t resist exaggerating the second time around.Even complete technological incompetence, which is what – by elimination – you’re relying upon, does not explain the failure to usefully cite one’s sources.
Avocational pontification, however, seems parsimonious.
If she doesn’t want the chemo, then she shouldn’t be forced to take it. It’s as simple as that. Whether are not there are repercussions to deal with from the decision that this young lady and her family makes by refusing it is for this girl’s family and her to deal with alone. If she dies, she dies. If she doesn’t die, she doesn’t. That is something that I’m sure this family has considered and that should be good enough. Who are we or anybody else to sit here and list off all the wrong decisions that these people are making—especially if this girl is 17-years-old. I don’t think it’s fair for them be scrutinized for refusing to accept the usual treatment. I’m not promoting or spurning alternative treatments in saying this. And I’m not commenting to label anyone as being right or wrong in their opinion on this. However, people supposedly have a right to refuse treatment as long as have the capacity to make informed decisions—whether or not it results in death. So the decision is solely up to this girl and her family. The courts should not be involved.
@the author: Do you have any idea how many practices in the medical field are done or medications are given out for research purposes without public knowledge? Unfortunately, conventional medicine is not as straight forward as we would like to believe.
Ms. Boutin: “The author: Do you have any idea how many practices in the medical field are done or medications are given out for research purposes without public knowledge? Unfortunately, conventional medicine is not as straight forward as we would like to believe.”
Have you clicked on his name under the title? Try it. You might also try reading the article where the young lady’s age is discussed.
And as to your last sentence, do read the following:
https://www.respectfulinsolence.com/2013/02/14/the-pharma-shill-gambit/
PB — if you knew a teenager who was going to kill herself, would you intervene?
@ shay #169: Excellent question! The whole “parent’s rights” / “patient’s rights” schtick is one thing in the abstract, another thing if the person who is going to die unnecessarily is someone you know and care about personally.
PB says, “I’m not commenting to label anyone as being right or wrong in their opinion on this.” Nonsense. Of course she is. We’re scrutinizing Jackie Fortin for manipulating her daughter into “refusing to accept the usual treatment.” We’re arguing the decision should NOT be solely up to this girl and her family. Many of us are of the opinion the courts should be involved, though we may have minor disagreements about exactly what legal policies are appropriate.
So I would personally like to thank ‘Paula Boutin’ for re-affirming yet again the utterly disingenuous nature of ‘parents rights’, and furthering the case for social intervention to protect not only minor children, but any patient of questionable mental competence, from sacrificing their own lives.
Cassandra needs to smuggle out a tearful ‘they’re killing me’ video from confinement, as was done for Justina Pelletier. It is ironic that this is happening in CT which is where Justina is from. It did not take long for ‘the people’ to make up their mind once they heard from the victim herself speaking from imprisonment.
These state sanctioned medical captures need to be exposed and stopped. From Patrick Henry’s famous speech: “Is life so dear, or peace so sweet, as to be purchased at the price of chains and slavery?” Our government has a lot on its plate without imprisoning us for medical treatment that is clearly not desired. Help people who want it and leave those who do not alone.
I suspect that obvious overreach in cases like this lead people to wonder if the government is doing the same with vaccines. It is the scofflaw effect. If some laws are bad and should be ignored, it becomes harder to decide which ones are ‘good’. It is an argument for limited and ‘good’ government.
Currently she’s a minor, without the legal right to make this decision. Her parents, acting as her guradians, do, but their ability to withold medical treatment from their child is itself not without legal constraint.
If she were diabetic and her parents went to court seeking the freedom to withold insulin injections from her, and she agred because she didn’t like receiving injections, would you similarly support their demand?
Lee, I’m not seeing obvious over-reach here. A family opted to withold life-saving medical treatment from the child they are guardians of, and child welfare agencies acted in full accord with existing law.
Where’s the over-reach?
Not that he wasn’t willing to straitjacket his wife when she became a danger to herself and others.
I did not know that ” She was kept in a seventeenth century version of a straight jacket in the basement of the Henry’s Scotchtown home.”
You sir, have just blown my mind, he was imprisoning his own wife to save her own life all the while complaining about a moderate tax to fund the cost of protecting the colonies from the French.
JGC, the overreach is in that the medical profession are not rulers. When you make them rulers, they become adversaries – at least to some. And that may well keep people from even seeking medical attention for their children if even a small chance of having the state snatch them exists. The decision to forgo medical attention is usually a bad one, but it should not be compounded by state force being used. The effort and expense should go to people who want the help, and there is no shortage of those.
On the insulin question, if the patient and the guardian both reject the treatment, that is a decision I think that should be respected.
Narad, is that some sort of ad hominem counter to Patrick Henry. To many his attempt to save his wife added poignancy to his arguments for liberty. His wife was a slave to madness, and she died very close to the time he gave that speech. She was kept in their home because the conditions in asylums of the time were frightful. (and likely even worse than where they are keeping Cassandra – but she belongs at home as well). An historian might could fill in the exact date she died, the internet gives many dates for her death.
The medical profession are not rulers in Connecticut. The democratically elected State legislature has passed laws to protect the lives and safety of minor children. Those laws REQUIRE medical personal to report cases like Cassandra to Child Welfare authorities. Then the courts decide.
It’s highly unlikely people will fail to seek medical attention for fear of losing custody as that can only be put on the table if they refuse medical attention. If they’re of a mind to refuse, why would they seek it in the first place? Windsor Locks is not the Six Nations reserve. There is no history of State.kidnapping, re-education – they’e not going to put Cassanda in what amounts to a concentration camp.
Well, at least there’s confirmation of the vaccines as metonymy for libertarian/anti-government ideology meme.
One would need more than assertion to establish mandated chemo = chains and slavery. I can think of parts of New Haven, where folks would be really insulted by that comparison.
@ JGC: Admiring your restraint. Sometimes the stupid that lands here burns way to hot. standard-of-care = “chains and slavery”… help!
Of course, vaccines aren’t about YOUR health, they’re bout public health.
Add PBEs to New Hampshire and it’s not “Live Free or Die” it’s “Your kid dies so I can live FREE!”
sadmar, your response deserves careful reading to see a very different viewpoint than mine, and one shared by most readers on this site, I think. You properly combine the major players, medical, state, child welfare, and courts that it takes to allow this to happen, and apparently correctly in your view.
Note that you brought up the ‘concentration camp’ analogy, and that one of their hallmarks were unwanted medical treatments on prisoners. Cassandra does not want to be locked in a hospital or to be given the ‘standard-of-care’ treatment. I say she IS a prisoner. Everyone needs to think about where they stand on this, because that is the real issue.
It may be stupid, but I don’t think using law to wage ‘good’ on people is a ‘good’ idea. We have limited resources; if the government must use them, at least use them on people who want them. If you got the idea that I am opposed to vaccines, from my comment, I apologize, I did not mean to give that impression.
Who is making them rulers? How does intervention by child welfare agencies when parents withhold medical treatment that demonstrably offers the best chance of success and long term survival make them rulers?
“The decision to forgo medical attention is usually a bad one, but it should not be compounded by state force being used.”
And your position is that if a 10 year old child hates needles and their parent thinks sacrificing chickens to the Orisha Chango mgiht help they should be free to pursue that course of action–one that all evidence predicts will lead to the childs early demise–and public health agencies should do nothing to intervene?
How about after the fact, when the child has died. Is that when we hold the parent’s accountable?
“Ad hominem”? What? It’s the simple observation that argument by aphorism is prone to backfiring.
And if effective psychiatric pharmacotherapy existed at the time, do you suppose the imaginary figure that you’ve invoked would have endorsed a few weeks in a locked ward to stabilize her condition?
“Likely”? You think that maybe the Connecticut Children’s Medical Center is worse than being chained to a wall with a chamber pot?
@ Lee #128
NP. I did not take your comment to be an anti-vaccine statement. I apologize for not being clear. I took your comment to express the same larger ‘Libertraian’ ideological principles being employed by anti-vaxers to justify their position in terms of ‘personal freedom’.
But now that you mention it. What is your opinion on:
• whether schools should be able to require vaccinations students
• whether ‘personal belief exemptions’ should be allowed for those requirements.
BTW, do you have a citation for your assertion that CT intends to keep Cassandra locked up in a hospital? And can you you explain why you think you know exactly what Cassandra wants?
(Hint: Don’t cite a newspaper story. Read the whole thread.)
By certain accounts, the “reluctance” was being pushed by the mother & didn’t truly reflect the actual feelings of the girl.
Unless Lee can provide evidence to the contrary, it sounds like he’s just whistling Dixie.
http://www.courant.com/opinion/op-ed/hc-op-cassandra-my-body-my-life-0109-20150108-story.html
Read Cassandra’s own words for yourself. I need no more evidence of her thoughts on the issue. She is being held prisoner against her will, and being given an invasive medical treatment she does not desire. This was published in the Hartford Courant a few weeks ago. It sounds to me like she means it. Also it has been a while since I have whistled Dixie, it not so fashionable as it once was.
Should vaccinations be required? Yes, for certain terrible diseases. Polio and smallpox come to mind (though smallpox is gone). Probably measles, I do not know enough about it. And if they are necessary there should be no exceptions. When we can knock off these big killers we should. A close look will show that most of the people who actually opt out of vaccines are not libertarians.
Narad, because Patrick Henry has been dead for 200 years or so does not make him imaginary, or his words less important. I think he would have done anything he could to save his wife. I haven’t visited that hospital or any asylum recently, but I still say it is likely that Children’s Hospital is better than an 1770’s asylum, but Cassandra describes being tied to a bed, sedated, and waking up with a port inserted into her, all against her will – not a pleasant picture.
JCG, It is hard to decide on a hypothetical case, but as a general rule I side with the patient and his parents if they agree. If the child dies, the parents suffer, there is no point in compounding that by criminalizing it so someone else can feel that justice was done. We have thousands, probably millions, of people in America who need the care that could have been provided by the money wasted hounding these people and then litigating the cases. There is an opportunity costs to these things.
Gee, I wonder why nobody thought of looking at the Courant coverage in the first place. Oh, wait.
It’s as though you’ve read neither the foregoing comments nor the post itself.
The Patrick Henry that exists in your mind, apparently for the sake of saying things that you think demonstrate that “he” “supports” you is most certainly imaginary.
Trying to defend argument by aphorism by vague appeal to “importance” is just sad. Do you object to the Constitution similarly to Henry? Would weakened federal power help or hurt here?
Narad, if you read some of the posts responding to me, it seemed they did not think I had read the cited article. I did read it, and oddly enough, I happen to believe it.
I cite Patrick Henry to give him credit for the words he spoke. It is the sentiment that I believe supports individual liberty. It is not a vague appeal to importance – those words were and are important, and so is the idea. This is very much a political discussion about the power of government. We are discussing the distribution of rights, and it is hard to tell just what sort of argument will win the day.
So you bactually do believe parents should be allowed to substitute animal sacrifice for medical care, even when doing so will result in the death of their child? The mind boggles…
Because gods forbid should do anything to deter other parents from making the same choice…
Which might be an argument that we streamline the process so it costs less to litigate against these patients, or that we secure greater resources to meet the needs of those other patients. It isn’t an argument that child welfare agencies stop dedicating resources to protect children placed at risk by their parents.
Narad, if you read some of the posts responding to me, it seemed they did not think I had read the cited article. I did read it, and oddly enough, I happen to believe it.
“The cited article”? Do you mean the post you’re commenting on? I’ve read all comments in response (except Sadmar’s), and I’m not seeing any “they.”
Do speak for yourself. Or define your neologisms. Or respond to direct questions without miasmatic hand-waving. Or respond to the direct criticisms of Jackie Fortin apropos to this blob of gasbaggery:
And how did that work out?
Justina Pelletier, as of last December she’d been readmitted with deteriorating health . She’s also become a cause celeb for the right wing wackos.
Narad, I am beginning to see what you are driving at. But I am not trying to prove that freedom is better than imprisonment. I am trying to convince many people that it is true. Can something based on personal beliefs be ‘proven’ by a logically perfect argument. An aphorism, and particularly a well known one, seem to be useful short-hand.
Now I need to be enlightened. ‘miasmatic hand-waving’…
This paints a vivid picture for me. I once lived in a place with such serious air pollution that one could easily believe it was a miasma, certainly might have cased lung ailments anyway. And I can almost see myself vainly trying to wave that gooey brown air away. Your reference to hand-waving obviously relates to how weak you think my argument is. But am I even close on the your meaning of miasmatic.
Are you trying to pin me down to some absolute statement like ‘I believe people have an absolute right to refuse medical care’ ? Is my gasbaggery too nuanced? I feel know need to address other writers obvious disdain for Mrs Fortin. Let’s turn it around, what if she was a brilliant medical scientist, with a perfect logical argument? Would that, could that affect your judgment here? I don’t think you like people like Mrs Fortin, does that tip the scales against her?
Justina was let go, and is still alive, so, so far so good. That case was even worse than this one, since there was a disagreement between medical professionals. To me, to put it in this site’s terms, it seemed like woo vs woo. She is sick and no one knows why. She certainly didn’t look too good after months locked up on the psych ward. I suspect treatment for somatoform disorder does not approach the 85% claim for Hodgkin’s treatment.
You have just copped to trying to establish neither a legal argument (*koff*distributionofrights*koff*), nor an ethical one, nor a moral one, but rather an aesthetic one.
“I have but one lamp by which my feet are guided; and that is the lamp of experience. I know of no way of judging of the future but by the past.”
Oh, crap, that doesn’t work.
In an odd turn of events, it seems that Henry teamed up with John Marshall on (failed) legislation that would have promoted – and subsidized – miscegenation of Euros with Natives.
So it goes.
^ Oh, right (PDF; there’s plenty more). Footnote 62 (emphasis added):