The Right to Choose

Before Christmas I had a long written discussion with a British blogger named Josephine who sent and posted an irate letter to the London Evening Standard for "promoting a fundraising campaign set up in order to send a five-year-old girl suffering a rare form of brain cancer to the controversial Burzynski Clinic."

I do not know enough about Dr. Burzynski to be a supporter, but this posting, which claimed that the "Burzynski Clinic are exploiting [vulnerable patients] (and the well-meaning public) in an unscrupulous, unethical, even illegal manner" and charged that the Evening Standard was "effectively complicit" in this, needled me into a response.

According to the Standard the girl suffers from a rare and aggressive form of brain cancer, called a supratentorial primitive neuroectodermal tumour, for which she had already been treated with chemotherapy and radiation. I would presume that if the treatment she received had worked to satisfaction, i.e., the child were now in remission, the family would not be raising funds to go to the Burzynski clinic. Elsewhere on the web I read that this type of cancer has a worse prognosis than other childhood brain cancers.

The issue at hand, for me, was that Josephine and the commenters who supported her view seemed to be implying that this family and their child should somehow be deprived of the right to access the treatment the Burzynski clinic offered because it was unproven and controversial.

To me, that is simply wrong.

They were contrasting Burzynski's unproven and controversial treatment to the scientifically proven (and therefore superior) treatments offered by orthodox medicine, namely the same chemotherapy and radiation which the child had already received, which were apparently not successful in eliminating her cancer.

The chief defence given for the superiority of these treatments to Dr. Burzynski's is that they are "scientifically proven". Scientifically proven to do what? To shrink a cancer tumour by a certain percentage for a certain period of time, apparently. What happens on the day after? Or the day after that? And is there any proven correlation between shrinking tumours and long-term survival? Not necessarily. But this scientifically proven treatment is the gold standard, and it's the treatment everyone must have, even if the chances of 5-year survival are minuscule and even if the treatment guarantees horrific suffering and in some cases may even lead to death.

Can someone explain to me why it should be the preferred treatment? Or why people should be prevented from accessing other treatments, which may not be scientifically proven, but for whose effectiveness there exists a body of anecdotal evidence?

And just how scientific is scientific medicine, anyway?

Dr. John Ioannidis ("Lies, Damned Lies, and Medical Science", The Atlantic, November 2010) has made a career of doing meta-analyses of medical studies. After years of painstaking research he has come to the conclusion that a large percentage of these studies is misleading, exaggerated, or simply wrong. He discovered an "astonishing range of errors":

from what questions researchers posed, to how they set up the studies, to which patients they recruited for the studies, to which measurements they took, to how they analyzed the data, to how they presented their results, to how particular studies came to be published in medical journals.

When Dr. Ioannidis zeroed in on 49 of the most quoted research articles published in top medical journals, comprising the creme de la creme of medical research from the past thirteen years, he found that of the 49,

45 claimed to have uncovered effective interventions. Thirty-four of these claims had been retested, and 14 of these, or 41 percent, had been convincingly shown to be wrong or significantly exaggerated.

He has concluded that overall as much as "90 percent of the published medical information that doctors rely on is flawed". That's a shockingly high number.

Then we have Dr. David Eddy, written up in Business Week in an article entitled "Medical Guesswork". Dr. Eddy has been hard at work exposing the "dark secret" of modern medicine, which is that as much as 85 per cent of medical procedures are not backed by any hard science. "We don't know what we are doing," Dr. Eddy says of his own profession. "I've spent 25 years proving that what we lovingly call clinical judgment is woefully outmatched by the complexities of medicine."

When he tested doctors on clinical judgement, citing a "typical patient" and a "typical treatment" in their specialty, he found that doctors' predictions for the successful outcome of the treatment ranged wildly over the map, from 0 to 100 per cent.

He found a number of promising but unproven procedures that upon closer look turned out to be useless and even harmful, as for instance costly bone marrow transplants for women with breast cancer. I note that because these procedures are performed by trusted doctors, and not so-called "charlatans" who are out to fleece vulnerable cancer patients, they are widely accepted by the public and the people who receive them (and sometimes die from them), and are even lauded as cutting-edge, heroic medicine.

My intention here is not to lambaste doctors. Josephine pointed out to me that I probably would not be here today to "rant" at her from across the Atlantic were it not for their ministrations. I had to agree with her, given that I received certain vaccinations, a timely appendectomy, as well as many doses of antibiotics in my youth. Who knows where I would be without them. I also recognize that most doctors are conscientious, well-meaning individuals, who have no idea how much of the medicine they practice, which they spent years of their lives learning, is not science based.

What I am here to point out is that our so-called modern scientific medicine is likely about as infallible as the pope is, given that the pope is probably right at least some of the time -- yet many of those who follow it are far more fervent in their belief than the most fervent Catholic. They hold up "scientific medicine" as some kind of talisman of infallibility, which it most definitely is not. Both Dr. Ioannidis and Dr. Eddy suggest that in actuality less than 20 per cent of medicine is scientifically based. The rest is little more than guesswork and educated hunches based on anecdotal evidence -- the same kind of anecdotal evidence that is deemed insufficient to prove efficacy in the case of the Burzynski clinic.

Whether or not modern medicine has clay feet, a family who is faced with the loss of their child to cancer should have the right to research and seek out other treatments. If medicine had a magic bullet to save her, they would not need to.

Postscript January 2, 1 p.m. EST: I just finished listening to a news program on CBC Radio that included a segment on hope and cancer. A doctor whose name alas I cannot remember was quoted as saying that too much hope is not good for cancer patients. He opined that hopeful terminal cancer patients who were looking for a cure often opted for aggressive chemotherapy instead of palliative care. He said that he and his colleagues were seeing more and more patients dying from the side effects of their chemotherapy, going straight from their treatment to ER, and from there to the morgue. What a horrendous way to die and how odd to pin the blame on hope, rather than the dreadful, toxic treatments that are on offer! Again I ask, why should these people not have been allowed to seek out alternative therapies instead?