Are we are all “medical citizens,” embedded as potential or actual patients, with our physicians, insurer’s, pharmaceutical companies, government bodies and others in a system of societal, moral and organizational stakeholders?
Today, with the advent of the Internet, High Speed Bandwidth, Social Media, Support Groups and Self Care Protocols, patients for the first time in the history of medicine have the ability to alter the outcome of disease and illness for themselves, family members, friends and significant others.
This essay attempts to address a most compelling issue of our time. Are medical self-help groups and self-care methods helpful or are they challenges to the delivery of traditional medical care? How do they differ and what consequences arise from this debate?
Also, how has the advent of the Internet and Social media transformed the landscape of medicine? What limitations may exist in this new era of information technology and social communication? And to what degree do they challenge traditional care models? Can a patient or their advocate become more of an expert on their own medical conditions than their own physicians? The answer to this question is a resounding yes, if the patient uses all the tools now available to them.
Various published estimates unanimously indicate that hundreds of thousands of patients die and millions more are injured by medical procedures gone wrong, medication errors or their side effects and by medications improperly prescribed or not taken as directed by patients. And it is not just the infirm that suffer, but their families, their loved one’s, friends and employer’s who must suffer with the grief and change of lifestyle that so often comes with these mistakes.
Furthermore, on May 8, 2013 National Center for Policy Analysis, in a release, stated that first diagnosis error rates are increasing at an alarming rate:
• An estimated 10 percent to 20 percent of cases are misdiagnosed, which exceeds drug errors, and surgery on the wrong patient or body part, both of which receive considerably more attention.
• One report found that 28 percent of 583 diagnostic mistakes were life threatening or had resulted in death or permanent disability.
• Another study estimated that fatal diagnostic errors in United States intensive care units equal the number of breast cancer deaths each year — 40,500.
Therefore, second opinions are often necessary precautions, as are third opinions when the first two differ. In fact, Medicare and insurers often pay for third opinions under these circumstances as it saves them billions in the long run.
Prudence dictates that the “medical citizen” must beware of these pitfalls, as their lives may depend on it.
Also, with patient reviews and rating systems available right on our own smartphones, we must question whether or not physician decision making is being compromised as well. For instance, a surgeon knows that his or her treatment decisions can possibly either result in either saving a life or ending it resulting in damning social media judgements, whether legitimate or not, which can then hurt their medical practices? Does this introduce a bias that may alter or cloud a doctor’s judgement? There is no data to provide an answer as of yet.
So, are doctors becoming more risk adverse as a result of this new landscape? Physicians are now being compensated more and more based on better outcomes, lower costs, reduced re-admission rates and other variables – not staff friendliness or less waiting room times which many doctor review sites measure.
Often 5 star rating systems get few patient reviews despite the fact that the average doctor has some 2,000 patient charts (most healthy) and while it is human nature to complain when we don’t get the outcome we want, consumers are less likely to praise a positive experience because we naturally expect top service and thus neglect to post a positive patient review yet are rather far more likely to post a negative review to retaliate against the provider. So patient reviews are not a very good or objective source of fair and balanced overall rating of a doctor’s performance.
How can this dilemma be resolved especially when a surgeon does everything perfectly but the patient becomes a victim of medication errors, poor nursing compliance with medical orders or perhaps contracts a hospital born infection, or some other adverse event out of the doctor’s control even if the doctor’s work is excellent? Nevertheless these doctor review sites often blame the physician. So Patients need better tools to make judgements about their own healthcare whether it be which plan to select or which treatment option to go with given a choice.
If a patient does utilize a rating site, they should make sure it is a government site based on huge amounts of data or a private site wherein doctors nominate other doctors for their excellence and would use these “doctor’s doctors” to provide care for their very own friends and loved ones.
Doctor reviews by other sites using stupid criteria like waiting room times, friendliness of staff, waiting room decor and other questions that have nothing to do with best outcomes accomplish nothing but make money for their operators.
In modern day, it is not unusual for patients to challenge doctors when it comes to illness and disease. After all, according to Tejal Gandhi, MD, president of the National Patient Safety Foundation and associate professor of medicine, Harvard Medical School, “Preventable medical errors persist as the No. 3 killer in the U.S. – third only to heart disease and cancer – claiming the lives of some 400,000 people each year, at a cost of over a trillion dollars a year”".
Self-help groups and self-care probably date back to the dawn of civilization when people lived cooperatively in tribal settings. These groups dealt with all life issues related to the survival and political stability of the group. The dawn of medical ethics probably dates back some 2300 years with the publication of the Hippocratic Oath.
But now the game has dramatically changed due to major technological advances in medicine and with the great advances of the Internet now being the primary source of medical information for medical consumers. And with the explosion in social media, people have the ability to communicate and share information on a scale never before foreseen or imagined.
Add to this all the new stakeholders that have entered the fray such as insurance companies, employers, managed care organizations, Obamacare, biotech companies, governments and, of course, pharmaceutical companies and healthcare policy makers. The challenges faced by the medical citizen and social policy planners have never been so daunting.
Postmodern Medicine probably arose after the institution of Medicare in 1965 when Medicare was signed into law in 1965 by President Lyndon Johnson and third party payer insurance companies soon appeared thereafter. By the 1970′s the practice of medicine became the business of medicine and third party payment systems caused a surge in demand for services and the costs of healthcare delivery soared. Also, the debate over what is a disease and what is an illness now must be addressed in a sociological manner more than ever as it affects whether treatments are made available and what costs are covered by third party payers.
Self Help Groups are usually a group or set of people who all share or suffer from a similar malady which involves great personal cost and suffering for themselves and those who care for them.
Self-care is seemingly clear in meaning. We get a cut and we put a band aid on it. Have a headache, take an aspirin. But is it really so clear as pharmacy shelves that are now filled will medications that used to be available only by prescription and medical devices one can use for self-diagnosis and self-care which measure bodily functions and vital signs such as blood sugar levels, blood pressure, pulse oxygenation, etc. have resulted in patients self diagnosing and treating themselves, often without medical advice. Defibrillators are now a fixture in most large organizations where non-medical designated company personnel are trained and authorized to shock a worker’s heart in addition to CPR.
Supplies such as instant blood clotting powder, specialized bandages, diabetic compression socks that were not previously available in pharmacies, are now commonplace. But many of these products may do as much harm as good, if not used properly.
Self-care at least in many of its versions, usually includes some connection with the health care system, teaching people when they need a professional, how to do a self-examination and care for a condition without medical supervision. e.g. Changing wound dressings and bandages without the presence of a home care aid.
And with the advent of new and off-label use of FDA approved medications, televisions are awash with commercials advertising new drugs and therapies which espouse incredible benefits such as Viagra, which resulted in a stampede of male patients running to their doctors demanding buckets of the stuff, making Viagra one of the most profitable elective medications ever.
Television ads by pharmaceutical companies now target the consumer directly in order to create demand for their products, which can only be prescribed by a physician, are commonplace as well. Also, in fine print and muffled high speed speech, pharmaceutical companies attempt in these ads to disclaim liability for the fact that the medications advertised directly to consumers may have side effects that could seriously mess a person up or even cause death, while at the same time they are trying to get consumers to ask their doctors for these medications. This is a radical change in the supply chain and distribution of new pharmaceutical products and protocols.
So, what is a medical citizen to do? Turn to the Internet of course for information and Social Media discourse. The Internet is after all now the primary source of health and medical information as well as social communication.
Today, with over a hundred million American’s online with their computers, tablets, cellphones, and smart watches along with highly specialized apps, finding support is like reading a menu in a Greek diner. If can be hard to choose wisely.
The problem in discerning useful and credible information from garbage in, garbage out, or from commercial sites looking to sell goods and services targeting specific users based upon searches performed by the user and transmitted to advertisers via cookies and Flash Player LSOs.
Most people probably do OK and, undoubtedly, are using this resource responsibly. These resources can improve and maybe extend patient’s lives and allow them to find communities of other’s suffering from the same malady as them and can assist health care outcomes and help contain health care costs to society. We are now entering the world of virtualization, telemedicine, doctor and hospital rating websites and long distance robotic surgery as well as even fields like quantum medicine which seems like it comes right out of a sci-fi novel.
Where this will lead us in the future remains to be seen and cannot definitively be addressed in this essay.
This also leaves us with the issue of contested illness. As opposed to a disease, like a clogged artery that must be repaired with a stent in a catheterization laboratory by an interventional cardiologist, or an infection that must be treated with antibiotics by a physician, many illnesses are unexplained by traditional medicine, as opposed to diseases which are clearly recognized by healthcare providers. Illnesses are often easily dismissed by formal medicine resulting in denial of treatment or refusal of insurers to pay.
But the collective description of the same array of similar symptoms occurring among many thousands of individuals communicating with each other using self-help groups can lead to a change of heart in the medical establishment. Not to mention diseases that carry a social stigma with them where the patient is blamed for their own symptoms, like obesity, even though there are in fact diseases that cause obesity or depression, addiction and a host of illnesses that have not as yet been classified as diseases and for which there is no biomedical solution.
Online support groups can and have brought these conditions to the forefront, as in the case of fibromyalgia which is now recognized as a treatable disease, but for a long time was a contested illness dismissed by professionals as people too lazy to work or just seeking pain medication. What is certain is that online support groups provide people with opportunities to exchange information with each other and become experts on their medical problems.
Internet self-help groups are cost free and very effective. People helping people. It is a simple concept, especially in the age where the nuclear family is nearly extinct in western society, so people now seek out extended families. But self-help groups which are self contained and autonomous in theory are still predisposed to traditional group problems such as rivalry within the groups, inappropriate members, etc. They are also targets of commercial interests, for example when a user who does not know how to surf anonymously gets hundreds of cookies on the device they are using and then they start to receive unwanted ads by commercial interests or worse, spam and theft of private information.
Self-Help groups offer other benefits such as “Improved coping with Chronic Illness and Life Transitions, Friendship and Belonging, Spiritual Renewal, Increased Political Activism, Enhancing Civil Society and Reduced Healthcare Resource Use” (Humphreys, Keith, Social Policy, Spring 97, Vol 27 Issue 3 Pages 2-5)
That said, “social movements that consider themselves omnipotent and omniscient are often dangerous”. (Humphreys, Keith, Social Policy, Spring 97, Vol 27 Issue 3 Page 5)
You can bring a horse to water but you cannot make it drink. Many people are too set in their ways, too judgmental and have ulterior motives which can corrupt or disrupt the best intentions of the many.
Many medical professionals feel that patients playing doctor carries potentially serious risks as patients are not doctors or trained medical professionals. On the other hand, many would argue the same about professionals and professional groups which previously enjoyed unquestioned stature and in many instances took offense to being questioned or challenged.
But for a patient with a complex disease possibly accompanied by other co-morbid conditions, The Internet affords them unlimited access to research the latest medical treatments, pharmaceuticals and lot of other research that their internist may not be aware of.
With heavy patient loads a physician does not have the time to spend researching all of the worlds medical literature on new FDA approved medications and procedures. After a doctor sees a patient, often they don’t give that person’s situation another thought as they have 30 more patients to see that day plus hospital rounds.
But for the sick, if they have reasonably good intelligence and most likely they have much more time on their hands to research their specific disease or diseases that have devastated their quality or life, ability to work or career advancement, relationships all of which suffer, it is a logical assumption that with enough time and perseverance, the patient can find better treatment modalities or better doctors that can relieve most of their symptoms or possibly cure them completely.
If a patient remains docile, asks no questions, fails to review complex bills which even medical auditors cannot understand the billing codes used, then the patient will likely not receive the best possible outcome.
This issue has been thoroughly researched by the Institute of Medicine and the data resoundingly shows that informed patients consistently have better medical outcomes than patients that suffer in silence. The data is irrefutable!
So common sense dictates that patients should be proactive and learn as much as they can about their diseases or illnesses and work collaboratively with their doctors as a team, the goal being better medical care. Often physicians resist this in which case, a change of doctor may be in the best interest of the patient.
For example, mortality related to cardiac catheterization and angiography are significant enough that patients should be informed of the risks of death or major complications from the procedure or that there is an alternative called computed tomography angiography which can replace conventional coronary angiography in appropriate patients and is half the cost of the traditional procedure which is very lucrative for interventional cardiologists whereas computed tomography angiography is not. It is also a non-invasive procedure which will benefit those eligible at much less risk and a lower cost as well.
I am now speaking from personal experience because my own father, who died on Jan 26, 2006, suffered from complications that arose after a cardiac catheterization and angiography procedure that was unnecessary. A year prior to my father’s passing he had a stent placed in his left descending coronary artery which went flawlessly. Because my father was retired and living in NY he would visit all of his doctors prior to making his annual trip to Florida where he spent the winters in the sun.
This procedure was elective because his cardiologist suggested that the stent be checked before the trip. I should have known better and stopped him, since I was a patient and medical consumer advocate and researched and published reports for consumers and researched diseases for medical professionals for a living. The name of my company at the time was “Health Reports” a service of Multimedia Solutions Inc. a NY company I founded but due to later disability had to stop.
I accompanied my father on all of his doctor visits and when he went to the hospital he for this ambulatory procedure he was fine and he drove his own car to the hospital anticipating go home the same day.
His Interventional Cardiologist that did the procedure afterward said the stent was in beautiful condition but something went wrong because after the procedure my fathers extremities started turning blue from cyanosis. The doctor of course denied any relationship between the two events that happened within hours of each other.
The only possible conclusion that I could draw was that the catheter wire chipped of a piece of calcified plaque and lodged most likely in his lung as an embolism as he developed severe respiratory distress immediately after the angiogram. Now that had to be the greatest coincidence ever or a terrible medical mistake.
So a routine preventive screening where I was going to drive my dad home the same day turned into a week in the hospital after which he was moved into a step down rehabilitation facility and was expected to recover and go home.
On the evening before he was supposed to go home to continue his recovery at home, I visited him with my daughter and immediately saw something was very wrong.
Since there was only one doctor on the floor for about 50 adult residents, I practically had to physically drag the doctor to his room where his only suggestion was that he go back to the hospital. It took the ambulance 30 minutes to arrive to take hime to a major trauma hospital that was literally only a couple of hundred yards from where he was. I could have wheeled him over to the ER faster.
He died around 2 a.m. the next morning. They said he died from mesothelioma. I knew that was impossible because I never even heard the man cough once in his life or present with any of the symptoms of mesothelioma and I was in business with him for many years as well as his son.
Then, recently, when I was hospitalized in a Florida hospital for severe low potassium which was easily resolved over a few days of IV potassium infusion, a cardiologist walked into my room and said he wanted to do an angiogram just before my discharge, to check my stent that I had done a year earlier and I knew was fine and it literally became an argument because I questioned his authority. He finally admitted that the risk of death or complication during a cardiac cateterization were not insignificant. I finally agreed to a non-invasive Cardiac Ultrasound which showed absolutely nothing wrong.
And it had no relationship to why I was even in the hospital. I was released later that day and when I saw my regular cardiologist in New York, he called the other doctor a name I would rather not repeat and told me I may have saved my own life by contesting this man who I never saw before or since.
The odd thing is I only know this because I am an experienced Medical Literature Researcher but disabled.
Because too often patients are not informed of other treatment options for what ever ails them or for that matter the risks associated with many procedure options, because their doctors are simply unaware or don’t care or want to make the most money. Today, hiring an expert medical literature researcher is not a bad idea. And even a personal Patient Advocate which is a growing field for which no professional certification is required is a good idea if you can afford it because if your flat on your back and not in control and perhaps don’t even have family to help you, a personal Patient Advocate can be a good idea.
This is the new reality of healthcare. Its hard to be a practicing physician these days because of the rate of innovation, the problems of being a businessman, dealing with regulatory bodies, covering your hospitalized patients, litigation, etc. Many doctor’s can’t deal with it and quit medicine. And its getting harder.
Common sense also dictates that there is no longer a monopoly on medical information in this new era of instant information and mass communication and that transparency like revolution is a good thing once in a while.
In conclusion, as this essay attempts to address whether or not medical self help groups and self care alternatives are positive adjuncts or harmful challenges to medical care and how they contrast with one another as well as what consequences arise from such analysis, we can conclude with certainty that since the advent of the polio vaccine which brought about a tidal wave of medical advances available to help physicians cure disease, we are now in a new and ever evolving era of unprecedented advances in medicine, information and transparent social communication.
The costs of medical research and care have as a result of these advances skyrocketed to the point that medical resources have to be used in a more cost effective manner. Also, the issue of rationing medical care is one that social policy makers must give great weight to in their deliberations going forward since the implementation of the Affordable Care Act.
The issues are so complicated that consumers have a very difficult time making decisions as to how to best care for themselves and their families. Just picking a health plan can be a nightmare for families and professionals as different plans at different prices can work towards a families’ benefit or detriment depending on their socio-economic status, health history and lifestyles.
If these developments aren’t enough to contend with, the current power of the Internet as a source of both information and now also a powerful social medium in which people can connect with one another on a mass scale must be viewed as a benefit in a system that needs checks and balances due to the entry of so many stakeholders some of whom do not have the patient’s best interests at heart but instead are motivated by greed or are simply incompetent in their professions.
Self help groups, self care and the ability of a patient, or a loved one or an advocate to be involved in the management of illness and disease must work dynamically and cooperatively with their physicians, within this new medical landscape because the genie is now out of the bottle and we can’t look back but must look forward to a system of patients and caregivers working as a team towards the goal of healing and improving the quality of life of our citizens.
So what does the future hold. The last 30 years have seen an evolutionary leap more like one would likely see in a century or more. Now with new technologies such as 3-d copying and printing, and computer aided manufacturing and new medical fields like quantum medicine which uses the principles of quantum physics to better understand biology the future possibilities are mind boggling. The Civil war was only 152 years ago. Since then mankind has progressed from a way of life that sustained civilization for some 200,000 years at an astronomical rate. Can we absorb so much change so fast?
Gene Roddenberry foresaw a future beginning in 2236, 220 years from now with the release of Star Trek which has creating a self perpetuating movement. So what is our destiny, the view of Gene Roddenberry or perhaps, James Cameron’s “the Terminator” where mankind sparks an extinction level event by accident or by terrorism. Only time and man’s ingenuity will tell.