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Apr 22 2010

MS Patients demand access to unproven procedure

You may have heard a few months ago that an Italian scientist discovered a promising new method of treating Multiple Sclerosis (MS). It involves inflating a balloon in veins in the neck to alleviate blockages that he (Dr. Zamboni – true story) alleges contribute to the progression of MS. Anyone who has had a family member suffer from this disease knows how horrible the symptoms can be – loss of motor control, paralysis, loss of speech, dysphagia, and others. I first became aware of MS when a close family friend was diagnosed back in the early 1990s. She became wheelchair-bound, could no longer work, and her family life began to fall apart at least partially as a result of her own frustration and anger at the loss of her mobility. It was further dramatized later in one of my favourite TV shows, The West Wing.

Needless to say, MS is a terrifying disease. What makes matters worse is that both the etiology (what causes it) and a viable treatment method have yet to be found. Dr. Zamboni’s work potentially provides answers to both of these questions. It is for this reason that several patients are demanding that the federal government provide access (funding) for afflicted people to seek this treatment:

“While studies in Canada get underway, some patients are travelling overseas, paying for tests and surgery out of their own pocket. Others are lobbying for the Canadian health-care system to cover the diagnostic tests to look for blocked veins in people with MS.

I’m not even going to pretend that I know what it’s like to have a debilitating illness, or that I can do anything besides blandly sympathize with people who are suffering from MS. However, this story highlights an important and seldom-talked-about fact of health care and health policy. Patients should not be the ones calling the shots. We have grown to feel entitled to be in the driver’s seat when it comes to health. Respect for the autonomy and wishes of the patient is paramount in medical ethics, and I have no beef with that. An individual patient’s needs and wishes need to be respected. However, this does not mean that health policy should be decided by sick people.

When you’re sick, you have only one goal: getting better. Millions of years of evolution have hard-wired a strong survival instinct into all living species, and human beings are no exception. People suffering from disease and their families are willing to do just about anything for a chance at recovery, and logic plays nearly no role in the decision-making process. The problem with this is that people suspend their disbelief and are willing to jump at any chance, no matter how remote, unlikely, or unproven. This says nothing of the fact that patients are not nearly as well-informed as they think they are.

Health policy should be guided by evidence, not sentiment. The fact is that this MS procedure has not been tested for efficacy. We don’t know whether or not it actually works, we have only the case reports of one surgeon to rely on. Far be it from me to suggest that Dr. Zamboni is being dishonest, but there is a mechanism for determining “truth” in science, and it comes from systematic appraisal of facts while controlling for alternate explanations, not simply believing what somebody says. The claims about how well this surgery works need to be tested before we give it the green light. This is another reason why patients should not be making these decsions – they can’t dispassionately appraise the evidence and weigh the pros and cons. It’s all ‘pro’ – there’s a chance at life.

“So what?” you might say “anything that gives people hope is better than having no hope at all.” That sounds nice, but it’s frankly untrue. False hope is not superior to honestly confronting reality. False hope carries a double-edged sword: not only will they be devastated when the object of hope doesn’t work, but they will also be out money and time that they could have otherwise used either on efficacious treatment or something else that would enhance their quality of life (travel, time with family, etc.). While it seems draconian and heartless to make decisions without putting patient suffering first and foremost in mind, the results of this process is that the greatest good will be consistently enjoyed by the largest number of people, rather than a scattershot approach that will be wrong as often as it is right.

Not only is it wrong to give false hope, there is a significant risk associated with surgeries, especially new surgeries for which many surgeons are not well-trained. All medicine is performed with a risk/benefit calculation in mind – basically, so long as the incremental benefit justifies the increased risk then the procedure is warranted. Surgery is particularly risky because of the risks of dying on the table, complications following closing, risk of hospital-borne infection, allergies to anesthesia, and others. What makes this particular surgery even more risky is that surgeons don’t have a lot of experience performing it, so the risks of complications and fatality is even higher. Without consistently establishing the size of the procedure’s benefit, it’s completely irresponsible to give patients access to the risk.

It’s also fascinating to me that every time a health governing body decides to push through a relatively new, somewhat untested treatment (like H1N1 or HPV vaccines, to cite a recent example), there is consumer backlash in the form of “we don’t know what the long-term consequences of this thing is, so we shouldn’t do it.” However, in this case, we’re getting backlash toward the health care governing bodies in the form of “you’re not moving fast enough.”

While I deeply sympathize with anyone who has to live with any catastrophic illness, I am firm in my stance that patients should not be the ones calling the shots when it comes to policy and decision-making, especially when it comes to untested interventions. Science takes time, and we will have an answer on this issue soon. In the meantime, it helps nobody to jump at every whiff of a cure, and could end up being far more harmful than we anticipate.

1 comment

  1. 1
    Chris

    This is a tough topic, and definitely worthy of discussion. As you say, we’re talking about situations where reactions and decisions are generated in the “gut”, rather than in the brain. It can be a struggle to overcome “gut” reactions and look closer at the evidence.

    I can’t say for certain what I’d do if I or a loved one were saddled with such a debilitating disease. I hope, though, that I would approach any new treatment with as much skepticism as I do something like homeopathy.

    Hope is an important thing. I truly believe that it can make or break any number of situations from a fight against illness to climbing out of poverty. Hope can be a funny thing though. I was considering this whilst tossing and turning last night and it struck me that hope is little like faith.

    Now, one can have hope that is based upon concrete possibilities. As you demonstrate, however, hope (like faith) can also be based upon untested and unproven information. I agree that this can be harmful in the long run to someone who is in a desperate state. Conducting one’s existence based upon magical thinking – and this is just one man’s humble opinion – is never the best policy, and will certainly lead to dubious outcomes. But alas, the greater portion of humanity does indeed conduct their lives in this manner, much to my dismay. And so, perhaps there is a connection between what one is willing to base their hopes on, and how much faith one puts in the “divine.”

    Your post has also prompted me to think a little more deeply about evidence-based medicine, and who should be “in charge” of an individual’s health care. Apropos this appears; I go to be poked and prodded at my yearly physical this very afternoon. I haven’t collected my thoughts completely on the subject – perhaps this weekend. Good stuff, Sir, thanks.

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