With Student Athletes at Mainstream Collegiate Athletic Programs, the time has finally come for them have a “Voice” in how their rights are established and managed. The sad reality is that breaking new ground with their rights will be as realistic as seeking sympathy from the devil. But given how much money they generate, the National Collegiate Athletic Association (the “NCAA”) will soon have to at least “go through the motions” of listening to them because that exercise in futility is far less expensive than implementing change. This got me thinking to my status as a “Professional Hospital Patient” and about the Hundreds of Thousands (or even Millions) of Chronically Ill Patients around the world. Just like the Student Athlete is the Asset by which all other collegiate sports issues revolve around, the Medical Patient Voice is the benchmark of global healthcare Patient outcomes and also the standard of healthcare Consumer expectations. Let’s be serious for a moment: the “Patient Voice” is so much more important than that of Student Athletes because Duration of Lives, Quality of Lives and Choices in Lifestyles and Professions are directly affected by healthcare decisions, laws, mandates and “Influencers.” Thus Patient Voices MUST BE CONSIDERED in moving forward with Global Healthcare. After all, who else knows what it is like to be a Patient? Who else knows if the current Patient programs and protocols in place are maximizing Patient care? Physicians?
Let’s see about that. A few years ago in 2000 or thereabouts, when I was considering writing my Book, “Confessions of a Professional Hospital Patient,” essentially chronicling what goes on inside a Hospital hour-by-hour from a Patient Perspective, I began discussing the idea with a Physician-colleague at the wind-down of a local chapter Board Meeting of the Crohn’s & Colitis Foundation (“CCFA”). While I have my issues with the politics of how the CCFA is often run, I sincerely applaud their efforts at helping people like me who must somehow manage life despite the increasingly pervasive challenges posed by Crohn’s Disease. I especially appreciate the volunteers who give of their time to help me in this battle. THAT is the most selfless act a person can ever do, i.e., to give of themselves to help others expecting nothing in return. I wish I could say the same for this Physician but he arrogantly started to question my veracity on the subject matter of being a Hospital Patient such that I could even qualify myself as an authority or “expert” to write such a book whereas he, as a Doctor, and seemingly an inherent authority on the subject matter, was more qualified.
At that point in my life I was hospitalized over 100 times for my Crohn’s Disease so I felt I had a solid authoritative voice on the subject matter and this Physician was familiar with my struggles in this regard so I did not understand why he was challenging me in front of the entire Board of Directors of the CCFA. So I asked him how much time he spent, on average, with a patient during a hospital visit? He replied that he wasn’t sure but it couldn’t be more than Six (6) minutes or so due to health insurance company rules and regulations. I nodded my head in agreement that medical professionals are severely limited by such health insurance company rules and regulations but then I asked this Physician: “What then makes you think you know what goes on with a Patient inside a Hospital the other 23 Hours and 54 Minutes of the typical day? Don’t you think that an experienced Patient like me has just a little more first-hand knowledge on this particular matter than you do?”
Mr. Know-It-All-Physician took a deep puff of his misogynistic almost-prop-like cigar and out of the corner of his mouth dismissively answered my question but did so addressing the rest of the Board so as to make a mockery or our conversation by saying: “That’s why I rely upon my Nurses.” His physician-colleagues smirked as he packed up his materials to leave, since the meeting was winding down and our conversation was informal, but I smiled and retorted, “Thank God for Nurses because it is their system of ‘Reporting’ which ensures Continuity of Care for Patients like myself because if we Patients had to rely upon condescending physicians like you we’d be screwed.” The room went silent and he turned to me and stuck out his hand and said, “Good luck with that Book, son.” From my perspective, insulting and demeaning someone and then sticking out your hand as a symbol of “let’s agree to disagree on this” is akin to sending the woman you love flowers only when you are apologizing for something. It is a meaningless gesture intended for cosmetic purposes only. Additionally, as I was 38 years old at the time with a Law Degree and an MBA, and this arrogant Physician was well aware of my professional qualifications and skills having been the beneficiary of them on a few occasions, I just smiled and continued packing up my stuff and felt no need to shake his hand. That was my way of saying, “You arrogant schmuck, I feel sorry for your patients.”
In terms of more recent examples of the importance of Medical Patient Voices you need look no further than September 16, 2011, when the well-respected News Resource, “NPR,” published an article written by Scott Hensley entitled, Doctors Call For Pullback On Narcotics For Chronic Pain, which was based on the findings/opinions of THREE (3) Doctors who published an editorial on the matter this past week in the Archives of Internal Medicine. Instead of using narcotics for the management of chronic pain, these evidently healthy doctors advocated talking with patients about the limits of pain relief and give alternatives to opioid drugs, such as physical therapy or yoga, their due. Yoga? Huh? Are these doctors from Venice, CA? Have these doctors ever been patients besides the day they were born? Have any of these doctors seen the fabulous movie starring William Hurt entitled, “The Doctor?” Do any of these physicians have personal experiences with chronic Fibromyalgia, Arthritis, Spine-Fusion Surgery, Constant Back Pain, numerous surgeries, immune-suppressive Diseases such as Crohn’s Disease, Lupus, Pulmonary Fibrosis, etc.?
Do they even understand that a KEY ROLE of Pain Management is for the chronically ill patient to be able to nevertheless maintain a quality of Life without having to be admitted to the Hospital for Pain Relief each and every time their pain rises to the level that a Tylenol or a Rolaids cannot help them with? Do these short-sighted doctors realize that it is even economically prudent to permit Pain Management to function in this regard as it is less expensive to dispense and monitor the narcotics than it is to admit patients to hospitals? Or do they have such little pride in their professionalism and are so lazy that taking the “path of least resistance” is their solution to this problem when a few bad apples of drug addicts and/or drug dealers are spoiling a Quality of Lifeline for Hundreds of Thousands of Patients suffering with chronic pain? Do they also not realize that their actions have such far-reacting consequences that National Chain drug stores such as Rite-Aid don’t even stock the powerful, long-lasting narcotic, Oxycontin, due to the aforementioned potential abuse situations? I only learned of the Rite-Aid situation last week when I innocently walked into a store near my Pain Management Physician’s office seeking to fill my prescription for Oxycontin only to be essentially thrown out of their store under the presumption that I was a drug abuser or drug seller. I felt like Leper thanks to the effects of a few spineless comments in the media made by just a few Pain Management Physicians. These days, I guess, Patients in true need of FDA-approved Pain Relief drugs are made to feel like criminals. What a fool I was thinking it was hooded sweatshirt when all along it was my FDA-approved prescription!
In fairness to the author of the NPR article, namely, Mr. Scott Hensley, a retort was obtained from Dr. Robert Chou, who heads the group at the American Pain Society working on guidelines for clinical practice. Mr. Chou was then quoted as saying:
While it’s important for clinicians to be more thoughtful about who they prescribe long-term opioids to and to stop opioids when they aren’t helping or there is evidence that it is causing problems, the American Pain Society believes opioids have a role in the management of chronic non-cancer pain in carefully selected and monitored patients.
There is evidence from long-term observational studies and evidence coming from some long-term clinical trials that opioids are effective for improving pain in some patients.
For example, we do not believe that a trial of low doses of opioids should be denied to a low-risk woman in her 70’s who has severe hip arthritis, who may be able to garden and walk with decreased pain on it.
While the data on overdose deaths and abuse of opioids should concern all members of society, it does not justify an extreme blanket position of no opioids for chronic non-cancer pain.
Just so no one can accuse me of being a mere spineless “opinion,” I have been a chronic Pain Patient for over 25 years who is “dependent” on narcotic pain medications through the careful administration and watchful-eye of Pain Management Specialists for treatment Severe Crohn’s Disease which has necessitated almost Twenty (20) serious surgeries, depleted my immune system such that I now have Bronchiolitis Obliterans with Organizing Pneumonia (i.e., “BOOP”) and am in the middle of a course of Chemotherapy to treat this Life-Threatening BOOP Lung Condition as a 3-month daily dose of 60 mgs of Prednisone did not cure the BOOP and only caused a Crohn’s Disease Flare-up for which I can essentially take no medication because ALL “Anti-TNF Agent” drugs such as Humira and Cimzia are off-limits to me now since the Doctors believe my exposure to Humira and Cimzia in treating my Crohn’s Disease is why I came down with BOOP. The resulting joint pain from the Crohn’s Disease Flare-up is so debilitating at times that without Pain Medication all I can do is lie down on a couch, cry and pray for the aforementioned mystical “Yoga” relief these spineless Pain Management Physicians are suggesting. Maybe I am lacking special candles? Perhaps I need a different Yoga uniform? In all seriousness, is it not torture and/or cruel and unusual punishment to withhold these drugs from me when my various painful conditions are painstakingly documented and I am seeking the medications from Board Certified Pain Management Physicians?
Lastly, the dangers of Doctors, Politicians and other people with easy access to mainstream media using Public Access forums to advocate medical policy is no more demonstrative than by the recent comments made by Republican Presidential potential Candidate Michele Bachmann on Tuesday, September 13, 2011, linking the HPV Vaccine to “mental retardation,” when she told NBC News she had heard from a woman who said her daughter “took that vaccine, that injection, and she suffered from mental retardation thereafter.” All politics and other intentions aside, such manipulations of the Mainstream Media to affect years of scientific research is dangerous and absurd and can only lead to BAD MEDICINE. Supposedly and scientifically, this HPV Vaccine has been proven to prevent Cervical Cancer when given to teenage girls. Accordingly, advocating anecdotal stories that, if taken at face value, could KILL MANY WOMEN with Cervical Cancer, is no different than the aforementioned spineless physicians taking the path of least resistance with respect to Pain Management treatment when they have no scientific or personal date to back-up their claims. Oh wait, it is different. Ms. Bachmann could be putting REAL LIVES AT STAKE! Do people not see how dangerous this situation is and that this is the classic example of the “slippery slope” often referred to in law school If Ms. Bachmann had relayed a “story” about, for example, Crohn’s Disease not being so pervasive and that too much of a big deal is made about it because a woman she met while touring the country told her so, I would be apoplectic. This has to stop.
These stories are all crap and they are why Credible “Patient Voices” and Health Care Social Media (“hcsm”) platforms are more critical now than ever before. It is why I will be participating in an interactive discussion and workshop, courtesy of WEGO Health, in the September 19, 2011 “Digital Health Coalition” being held in Philadelphia, PA, for the purposes of creating an “E-Patient Bill of Rights” for the global healthcare industry. I am looking forward to sharing my insights and to listening to those of others for only then will our healthcare system have a diversified set of Rights and Responsibilities to build upon. Just like the Student Athlete is the Asset by which all other collegiate sports issues revolve around, Medical Patient Voices are the benchmarks of global healthcare patient outcomes and they are also the standard of healthcare consumer expectations. I am honored to be asked to contribute to that meaningful conversation.