Tag: Take Your Medicine

Readers keep the thread going:

Cassandra is being called immature simply because she believes in quality over quantity of life, which is a concept that is pretty alien to most First Worlders who believe that science can/should keep us alive (and young) for as close to forever as possibly. In a very death-fearing culture, anyone who questions it is usually written off as crazy – when they are an adult – and “immature” when they are a teen.

By the way, the recent Canadian case where the Aboriginal girl was allowed to stop chemo because a judge found it violated her freedom of religion came to mind when I read about Cassandra. I followed that case in the news a bit. The interesting thing that came up in comment sections was not so much about how the girl and her parents were wrong to pursue alternative medicine (some did think this) but how lucky they were that they were Aboriginal and could therefore use their Charter rights to do so.

And that girl was 11 years old. Another reader:

There is one aspect I haven’t seen discussed about the right to refuse medical treatment, and I think it is a pretty big elephant in the room: Cost.

Who is going to pay for all that chemo?  I am assuming Cassandra is covered by some sort of insurance policy, but what if she wasn’t?  This decision might often be more than just the self-centered struggle about whether a patient wants to endure much pain in exchange for survival. It can also be decision about whether to allow one’s family to spend their life savings and face bankruptcy.  College funds, retirement plans, homes, farms, and just about everything money can secure are often lost in the struggle to keep a family member alive longer than nature would allow.

Health care in the U.S. is still a privately financed affair.  Can or should the state be able to force a family to purchase expensive medical services that they may not have the capital for?  Shouldn’t the state pick up the tab if they are the ones ordering the services?

Another circles back to the age question:

I’m not going to get into the merits of Cassandra’s case, except to point out that regardless of the outcome, this case should point out the confusion and continued absurdity of how we deal with the question of “At what point are you considered an adult?” The general consensus (and legal definition in most cases) is that 18 is the point when you are considered an adult. Many of the things that are considered the hallmark of reaching adulthood occur at 18. You’re allowed to vote, join the military, take on credit, live independently, and do things without requiring parental consent.

Yet, the same consensus also dictates that there are certain things 18 year olds are not mature enough to act rationally on, the most obvious regarding the consumption of alcohol. It’s the old argument that comes up when discussing alcohol: the state feels you are mature enough at 18 to join the military and kill someone if needed, but God forbid you need a drink to unwind after a long day. Furthermore, in many states, the age of sexual consent is dependent on what state you live in. In some cases, it can be as young as 14 or 15. It would seem to me that nothing would require the highest level of maturity than engaging in a sexual act, but then all hell breaks loose if the subject of handing out condoms or discussing birth control is even broached.

I know it’s not as black and white as this, but either have a consistent point where you say that under 18, your child and the law will treat you as such, or have all laws apply equally regardless of the person’s age.

Another turns the conversation to alternative treatments:

I must tell you about our experience with a serious disease.  It is the kind of experience that supports Cassandra’s decision. My husband was diagnosed with Aplastic Anemia, at the age of 55, in 2005.  With AA, the bone marrow stops making adequate blood. The prognosis was poor.  He was given transfusions to keep him alive and chemo to treat the AA.  After the IV chemo, he was put on powerful oral medication.  It was strongly suggested that a bone marrow transplant might be in his future.

The chemo helped lift his blood counts, but because the longterm prognosis was so poor, we started researching.  We tried to avoid quackery, and it’s definitely out there.  And when you’re desperate, you’re certainly vulnerable.  But we also found thoughtful testimony from people who had nothing to sell, nothing to gain, but simply wanted to tell their story.  We also found links to medical research that contradicted some of the doctor’s advice.

As a result of this research, my husband discontinued the oral medication.  He also began to refuse platelet transfusions.  The reaction of his nurse was angry:  we will discontinue you as a patient if you do not do as we say. It became clear that her motivation was not healing, but power.

Because the truth is: my husband was not doing nothing instead of the medication. He changed his diet completely.  He went to an acupuncturist and learned and practiced Qi Gong. He did a lot of soul-searching.

And his blood counts began to rise.  Sadly, none of his doctors seemed interested in this phenomena.  He stopped going in for blood tests.

In a similar situation I was following online, the end was much sadder.  The patient, 10 years younger than my husband, followed doctor’s orders – and died, leaving behind two teenage daughter.

My husband is alive and well.  We have a four-year-old granddaughter who is the joy of our lives, and another on the way.  Chances are good that he would have missed this joy if he had followed doctor’s orders.

So: please don’t dismiss all questioning of cancer treatment as foolishness and quackery.  Sometimes saying “no” can save a life.  And is it really appropriate to drag the family to court, to ridicule them in such a public way?  To post guards outside her door?  Could the doctors consider a heart-to-heart talk, and be open to her ideas about healing? Could they possibly take the time to listen, instead of just scolding and insisting?   Could a compromise be found?

Another relays the details of a famous case of refusing chemo for alternative treatments:

Concerning what your reader said about folks buying into myths to avoid chemotherapy, let’s not forget about what Steve Jobs did to himself. From the Wikipedia page on him:

Barrie R. Cassileth, the chief of Memorial Sloan–Kettering Cancer Center’s integrative medicine department, said “Jobs’s faith in alternative medicine likely cost him his life…. He had the only kind of pancreatic cancer that is treatable and curable…. He essentially committed suicide.”

According to Jobs’s biographer, Walter Isaacson, “for nine months he refused to undergo surgery for his pancreatic cancer – a decision he later regretted as his health declined. Instead, he tried a vegan diet, acupuncture, herbal remedies, and other treatments he found online, and even consulted a psychic. He was also influenced by a doctor who ran a clinic that advised juice fasts, bowel cleansings and other unproven approaches, before finally having surgery in July 2004.” He eventually underwent a pancreaticoduodenectomy (or “Whipple procedure”) in July 2004, that appeared to successfully remove the tumor. Jobs apparently did not receive chemotherapy or radiation therapy.”

A reader writes an open letter to the Connecticut teen who was just denied her right to refuse cancer treatment:

Dear Cassandra,

I was also diagnosed with Hodgkin’s Lymphoma, when I was 13 years old. I went through surgery, chemotherapy, and radiation. It sucked. I mean, really, it sucked. At the time, chemo was the worst. I puked for days on end. The word “nausea” doesn’t do it justice. I would puke until there was nothing left in my stomach, and then puke up bitter, foamy, yellow bile, until that ran out. Then I would just dry heave.

One thing no one seems to talk about is that you can actually taste the chemo when it goes into your veins. Or at least I could. I would use cinnamon mints to try to cover the taste. Eventually, the taste of cinnamon candy itself made me nauseous. I couldn’t eat it for years (it still isn’t my favorite). Back then, they used mustargen (I think it is much rarer these days, as there are better, less harmful drugs available). It was nasty stuff. One time, it actually leaked out of my veins, and burned my left arm – literally. It felt like it was on fire for days, and left scars that I can still see (but only because I know they are there – no one else could notice them).

I am talking about this stuff because I don’t want to come off as a Polyanna, like I’m trying to sugar-coat anything. It sucked, and in many ways, still affects me. But, Cassandra, with all due respect, the issue isn’t whether you are “mature enough” to make a decision to end your life. The thing is, you have no idea how much living there is left for you. No teenager does. There is no way to understand it from your vantage point.

And here’s what I really want to tell you:

life is fucking awesome. And I don’t mean in some kind of cinematic, gauzy, sentimental way. It isn’t all peaches and cream – not for anyone. But you will experience pleasures beyond what you can currently comprehend. I promise. I understand that one of your major concerns is that chemo will leave you infertile. It did to me. And I am now the father of two amazing children. Neither of them share my DNA – and I can’t imagine it is possible for any human to love anyone or anything as much as I love these kids. And nothing, absolutely nothing, even comes close to the joy I have already gotten from being their father.

Hopefully, someone had the foresight to freeze some of your eggs, and who knows what technology will make available in the future to increase your likelihood of having biological children. But even if that can’t happen, I will bet everything that you will find that once you are raising children – once you hold your babies in your arms, once you see them smile and laugh for the first time, once you know that nothing can comfort them like your own words and touch, not sharing your genes with them won’t diminish the experience of being a parent even a tiny bit.

But that’s just me. I have always wanted to be a father. Maybe that isn’t the most important thing to you. Here are some other things that you will do:

• Laugh with friends
• Fall in love.
• Make art of some kind.
• Dance.
• Swim, or run, or jump, or play soccer, or whatever it is you like to do with your body (yes, while Hodgkin’s sucks, it leaves you far more physically capable than a myriad of other ailments).
• See new places.
• Help someone.

I am more than 30 years older than you. The things I have done, the people I have met, the experiences I have had since I was your age dwarf everything that came before. And I have no idea what is still in store for me. Sure, getting old will suck – even worse than cancer did. But I won’t trade a day of it if it means one less day with my wife, one less picture of my grandchildren, one less day to brag to a nurse about what my daughter is doing in her career, one less laugh at a good joke, one less listen to a great song.

I don’t know if it is right for the government to force you to get treatment that you say you don’t want. That’s a tricky, complicated issue. But, Cassandra, that you are flat-out wrong, that you should do everything you can to fight for the life that you have a fantastic chance to have, is as clear and simple as it gets.

Sincerely,
An Old Fart

Another reader also had the disease:

Back in the ’90s, I had Hodgkins twice, first at 28 and then at 30 (it never really went away, so I had an autologous stem cell transplant). When I was first diagnosed, my doctor literally said, “The good news is you have Hodgkins.” This disease is no longer the death sentence it was decades ago, so it’s sad to see Cassandra’s brain be poisoned by her parents.

I am not a big fan of how cancer patients are presented as “battling” the disease, as it romanticizes it too much and can sometimes make it more frightening than it needs to be. But this girl’s parents need to be properly educated and asked why they would not want their daughter to live a healthy life. That has to be some sort of child abuse, no?

I like to tell friends who ask whether I beat cancer by saying that I only beat it if I die of something else first … which of course means I will never know if I beat it. That is a bummer, but Cassandra will one day be glad she has the same opportunity.

A much different view:

Cassandra is just “misinformed“? My wife had a similar experience to the parent who wrote in about their kid undergoing chemo at five. She was diagnosed with a rare and aggressive form of leukemia when she was four and underwent full-body radiation, several courses of chemo and a bone marrow transplant.

She’s now 34, and her whole life has been an ongoing medical drama – changes to her hair (“Chemo Curls”) and fingernails, tons of minor skin cancers, severe metabolic issues, irregular periods and a pretty horrific miscarriage the one time we managed to get pregnant, followed by early menopause at 29, followed by breast cancer and all the attendant surgeries and follow-ups that involves. She’s had over two dozen surgeries at this point in her life. She is, in my opinion, a minor medical miracle at this point, but nobody would deny that her whole life has been punctuated by intense pain and unimaginable suffering, almost certainly thanks to the cancer treatments she underwent as a child.

This is not to say that she would have been better off without the treatment she received then. She’d be dead if not for modern medicine. But each time it does get harder, her quality of life gets a little worse (not to mention the bills that pile ever higher and deeper), and a little more of her morale is sapped. I dread the day when we have to face it again even more than I did the first time. It doesn’t get easier.

So I guess I can’t really blame Cassandra. I don’t think she’s misinformed by scare stories. Chemo is poison and is a terrible, terrible thing to have to undergo. I feel for her and hope she finds some peace, and hopefully also the ability to forgive the state of Connecticut for trying to save her life.

As poignant as that sentiment is, another reader doubts it:

This is a teenager who’s already employed every evasion tactic she can – including running away – to make her wishes clear. The only thing that can possibly be the outcome of holding her captive and forcing very unpleasant medical treatments on her is that when she turns 18 this year and is able to legally walk away, she will never in her life go near a doctor or mainstream medicine again. I know I wouldn’t.

A reader writes:

Essentially the question is whether a 17 year-old can commit suicide, but with the added complication that she doesn’t understand that’s what she’s doing. She is misinformed, to put it gently. I’ve had aggressive chemo for a different cancer. It sucks, sure. It’s strong medicine with strong side effects. But there are a lot of dangerous myths online that are simply not true. It doesn’t kill the rest of you. It isn’t more harmful than the disease itself (we’re talking cancer here). And we know from many, many years of experience and studies that more often than not it works. I can’t tell you how many posts I’ve seen on an Internet discussion board for my cancer from people who say that they chose to skip chemo, against their doctor’s recommendation, because they bought into these myths and now they have terminal, metastatic disease. And regrets.

We have to draw the line somewhere. We don’t let 12 year-olds make this kind of decision. It seems to me that 18 is a pretty good place to draw this line. And this girl has not demonstrated that she is particularly mature for her age.

I remember the series you had on suicide. I can’t remember the expert’s name, but one thing she said stayed with me: your future self will thank you for not committing suicide. There is no question in my mind that Cassandra’s future self will thank the judge for not allowing her to commit suicide.

Another reader also relates to the story from personal experience:

I am the parent of a cancer survivor, and I feel compelled to ask who is it who helped convince Cassandra she was being poisoned?

Her parents quite clearly.  My son was diagnosed with a rare, aggressive and very often fatal cancer when he was five years old. His treatment was as aggressive and toxic as was his disease and lasted more than three years. My wife and I spent those years – each and every day – agonizing over the question whether we were doing our level best to save him,  or torturing him to no avail and thus destroying whatever quality of life he might ever have. He had eight rounds of such high-dose and toxic chemo that one dose would have killed an adult because  mature organs would not be able to withstand the treatment.

Several surgeries, extensive radiation, and a host of experimental treatments on top of that exposed him to an array of side effects and collateral risks.  Many times we didn’t know if he would make it through the night. But we saw our duty to comfort and support him as best we could and not to quit until we were told there was no hope for him to survive.  We cried in private and smiled and joked whenever we were with him.  We felt we had to be strong for him, to explain that the medicine was killing the cancer, not hurting him, and reminding him that we loved him and wanted only for him to live a full and happy life. We NEVER suggested that avoiding the near term suffering was an option.

We held him close through the hard parts but tried to make him as happy as we could during the rest of it. We developed comedy routines about some of the worst aspects, and he soon was able to laugh about it all when he wasn’t too sick. We made it, and are eternally grateful to the most wonderful doctors and nurses on the planet and their commitment to trying to cure him. He is now 21 and healthy, happy and in love.

I have cried like a baby reading Cassandra’s story, as I have attended more funerals of children than anyone should have to, as has my son. I can assure you that all of the parents of those lost souls would give anything to trade places with Cassandra’s parents and have the hope of survival for their child, and that none of them would ever suggest to her – by either  commission or omission – that her treatment – as awful as it may seem – was worse than the disease.

Of course she doesn’t want to undergo the treatment. Her mother has told her or agreed with her that it is poison, and whom does a child trust more than her mother?  The discussion of legal rights and the boundaries between childhood and adulthood miss the real tragedy here. That a bit of parental courage and support and the situation would likely be much different; Cassandra would in my experience be viewing the treatment very differently despite its effects. But as it is, it seems a no-win situation for no reason other than fear.  It is absolutely shattering, but not because it is abrogating Cassandra’s rights.

Teen resisting cancer treatment: “I care about the quality of my life, not just the quantity” http://t.co/nvF9WLwPUT pic.twitter.com/vTBs7KsA54

— Hartford Courant (@hartfordcourant) January 9, 2015

That 17-year-old in Connecticut trying to refuse chemo lost her court battle on Thursday:

The state argued that the teen lacked competency extended to maturity and that they did not believe she understood the severity of her prognosis. Her mother and her mother’s lawyer said they expect to go back to trial court to more fully explore the mature minor argument.

Her words are pretty heartbreaking:

The day of the ruling, Cassandra published a personal essay in the Hartford Courant about her experience. In the article, she describes crying and hiding from the police in her closet, running away from home after two days of chemotherapy, and being strapped to a hospital bed to undergo treatment against her will. She also refutes any claims that her mother was neglectful during her illness. “This experience has been a continuous nightmare,” Cassandra wrote in her essay.

“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 [the Department of Children and Families]’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.”

The Courant also published an unpersuasive counterpoint from a local man who got the same kind of cancer at 19 and chose to undergo chemotherapy. Key word: chose. But as Brandy Zadrozny notes:

A guard is manning the door [of Cassandra’s hospital room], which is always kept ajar so she can be monitored. Contact with her mother and the outside world—beyond nurses and her temporary guardian appointed by the state’s Department of Children and Families—is limited.

In the words of her public defender, Joshua Michtom:

[17-year-olds] can consent to sex with someone who’s near an age to them. They can get contraception. They can get addiction treatment. They can donate blood. They can be tried as adults for certain crimes. So there’s recognition overall that maturity doesn’t happen overnight. You don’t go to sleep a 17-year-old knucklehead and wake up an 18-year-old sage.

A cancer doctor who goes by the blog name of Orac has “written time and time again about children with cancer who refuse chemotherapy in favor of quackery”:

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.

But the doctor doesn’t quite know where to come down on this one:

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.