“Take Your Medicine” Taken To An Extreme, Ctd

Andrew Sullivan —  Jan 14 2015 @ 6:47pm

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.”