Recently, I came across a blog written by Eric Valor, a man who has locked-in syndrome because of a disease called ALS. As I have written in numerous blogs here, here and here, ALS in my opinion, is the most horrific AND underfunded disease on the planet. Oncologist Dr. David Gorski, an anti-alternative medicine, anti-anti-vaccine proponent, anti-woo doctor and author of many posts on a website called Science-Based Medicine, wrote an article criticizing patients who participate in Do-It-Yourself (DIY) trials. In his article, his criticism of ALS patients like Mr. Valor, who have embarked on their own patient-driven clinical research, is quite evident.
The patients Dr. Gorski is criticizing, are people who have been told they have between 1 - 5 years to live; patients who have been told there is no cure and that they will unquestionably deteriorate where they will not be able to move or speak; patients who have been told that if they want to continue living, they will require a ventilator to breathe, a stomach tube for feeding, and 24-hour round-the-clock nursing care; and the patients Dr. Gorski is criticizing may have also included a patient who was in the process of making a decision to travel to an area of the world where euthanasia is legal because the suffering was too much.
(Interestingly and as an aside, Dr. Gorski is someone I have mentioned in passing, in a blog I wrote here).
Dr. Gorski's article regarding the DIY use of sodium chlorite by ALS patients was well written, rationale, intelligent and well thought out. One could say though, that he is not an out-of-the-box type of thinker and is pretty much anti anything that involves non-blinded, non-randomized, non-placebo controlled trials. (My own personal views on Science-Based Medicine can be found here). There is no problem with rigid thinking. If it weren't for rigid thinkers like Dr. Gorski, many incredible advancements in modern medicine would not likely have happened, like many of the effective cancer therapies found today.
However, not all incredible modern medical advancements have been discovered under the rigid and restrictive auspices of the gold standard blinded RCT. And quite ironically, the eventual cure for this despicable disease called ALS, may in the end, have little to do with this gold standard. Stem cell treatments involving human cells injected into the grey matter of the spinal cord via a very delicate and innovative surgical procedure by Neuralstem Inc. will never see the light of day as a blinded placebo-controlled study. Neither will autologous mesenchymal stem cell injections into the cerebral spinal fluid by Brainstorm Cell Therapeutics, be guided by this rigid holier-than-thou yard stick. The thought of using placebo in a clinical trial involving potentially traumatic intricate surgery, or even "less invasive" stem cell injections into the fluid surrounding the spinal cord and brain, is silly at best. It is cruel and inhumane at its worst.
Mr. Valor wrote a response to Dr. Gorski's article entitled Response-able. In his article, he clears up the misconceptions and inaccuracies hurled at him regarding a DIY patient run trial using oral sodium chlorite that he himself had initiated.
Dr. Gorski's response to Mr. Valor (who goes by the moniker ENV), was extremely disappointing. Dr. Gorski did not address the methodology of clinical trial data analysis that the latter explained in detail with links. He did not address the ALS Functional Rating Scale that is used in patient-driven clinical trials and are the same ones used by neurologists. And most importantly, he did not even come close to addressing the concept of patient empowerment, especially in a disease that appears to be futile at present because the potential finish line of cure is so distant for the majority of patients.
I sometimes wonder if arrogance is the reason that some specialists believe that only they can impart wise advice to patients, that only they can deliver rationale treatments that use logical reasoning, and that only they can make accurate observations regarding patient progress and deterioration.
Over the years, I have worked with some specialists who have displayed the greatest respect for their patients. These gems of doctors understand the importance of patient empowerment and the concept of autonomous patient decision-making processes. I have also (unfortunately) listened to many patients who have been yelled at and abandoned by their specialists when these doctors did not completely agree with their patient's ideas regarding their own decision-making processes.
I started this blog by asking: where is the heart in medicine? What I am asking is, when does logical reasoning intellect in medical practice, meet with an open heart of understanding regarding patient choice and patient suffering?
I don't know the answer to that question for anyone but myself. I believe that each medical practitioner will find his own way to answer that question for himself and for his patients. In the end, no one except the practitioner himself will know the extent of his own compassion.
I've always had the biased belief, that if you are going to criticize patients with ALS, you had better have a heart of gold underneath. Maybe Dr. Gorski has a heart of gold and it's hidden under a bushel basket for only the private viewing of his patients and perhaps the display of other non-public acts of kindness. Who knows? Only he, and those he has imparted compassion and kindness to, know.
ETA 8/22/12: Treat Us Now is an organization that people can donate to, in order to give hope to those with ALS. Please donate.