I am a big advocate for patient empowerment. My ideal patient is both informed and engaged in her health.
I try and remember that there are not always hard and fast rules in medicine. While acute appendicitis should be treated with appendectomy, there are many chronic conditions can be treated in a variety of ways. As long as it is not harmful (remember: first do no harm), the best therapy in my mind is the one that the patient feels the best doing and will actually do. The medical literature is replete with studies of patients who never picked up their prescription. While sometimes it is price, many times patients leave the office with a big, “meh,” or an underwhelmed, “I don’t know about that,” which often leads to no therapy at all. Which for some medical conditions can be dangerous, never mind the wear and tear on the doctor-patient relationship.
I’m very willing to work with people on “unique” therapies. I practice chronic pain for women and many of these conditions are woefully under studied. It is hard for me to convincingly state that a treatment plan based on a retrospective study of 22 patients is going to be a whole lot better than an idea my patient might bring to the table. Once I had someone ask to try intravaginal misoprostol for interstitial cystitis (IC – a painful, inflammatory condition of the bladder). She had failed most conventional therapies. Misoprostol not only repairs stomach ulcers, but in a small case series (that I actually authored) has been shown to heal some vulvar ulcers. Misoprostol may also have immune modulating properties. Many women with IC have bladder ulcers and many excellent studies that show the immune system plays a huge role in this disease.
The point is that I could medically speaking draw a line from A to B (misoprostol to interstitial cystitis) through the basic science. And most importantly, there was no risk given the safety profile of the drug. The patient, understanding all of this, and with of course adequate documentation in the chart, wanted to give it a go and did so with my full support.
But there are times people present ideas or ask for treatments that I know, or at least highly suspect, are not good ideas. Maybe because they do not fit the criteria for the surgery or what they are asking for is clearly snake oil that some Dr. Dude is flogging on his website right along side his hCG diet and special tanning bed for vitamin D deficiency (tanning beds cause melanoma, BTW).
Some patients listen to why I don’t think that therapy is either safe or the right option for their medical condition. Many take my advice, and others move on, going from provider to provider until they get what they want. For anyone who doubts this happens, just look at all the back surgeries in this country for chronic back pain. Despite over whelming evidence that back surgery is the wrong treatment for many patients and that it has inferior outcomes to non-surgical therapy, there are surgeons who will simply do the surgery, “Because that’s what the patient wants.” I have heard that phrase with my own ears. From more than one surgeon.
Jackson was the ultimate empowered patient (misinformed, sadly, but empowered none-the-less). Whether he knew about the risks and disregarded them (basically addiction) or chose to only listen to sycophants is not known. What is known is that he wanted propofol and because of his resources, was empowered to get it. Apparently, some doctors can disregard the holy medical trifecta (Hippocratic oath, evidenced-based medicine, and common sense) for $150,000 a month.
If Dr. Murray was a good doctor, he would have said the following to Mr. Jackson:
“I applaud the active role that you are taking in your medical care. You are right, your insomnia is troubling and harmful and deserves medical care, but I am not the person to give you that care. There are sleep experts who know far more than I do. I can help you research the best ones and support you at those appointments if you feel you need me as an advocate, but I can’t in good conscience give you propofol. First of all, I am not an anesthesiologist and your house is not a hospital. Secondly, propofol induces anesthesia, not sleep. There is a difference. Thirdly, repeated use of propofol can alter brain chemistry and contribute to addiction. Finally, and most importantly, recreational use of propofol is often fatal. A study from 2007 from the University of Colorado tells us that the risk of death among anesthesia personnel who abuse propofol is 28%. It’s just not safe and it is most certainly not what you need.”
When a patient is empowered, but misinformed, the answer is to give them information and to point them to additional and un biased resources so that they can do their own research. Even better, doctors can help battle bad on-line content by posted good content! (why I blog, BTW).
Saying “no” is hard, and it often takes more time and leaves you with less reimbursement, but sometimes it is the right thing to do.
Now think about the 600,000 Americans every year who get back surgery for pain. In the last 15 years there has been an 8-fold jump in the number of people getting back surgery. What if instead of, “My surgery coordinator will give you a call,” patients actually heard, “You know only 27% of people who get back surgery for pain return to work, but we can increase you odds of working again to 67% if we don’t do surgery and get you involved in physical therapy, exercise, and a weight loss program. Also, if you have back surgery, you are far more likely to need opioids long-term than if you don’t have surgery. I know there are many web sites promising cures, but that just is not the typical outcome for many patients. I can’t do this surgery for you, it’s just not the right thing, but I can refer you to a comprehensive program that will help.”
If a back pain patient dies from a surgical complication, how different really is the surgeon who performed that procedure from Dr. Murray?