I changed my perspective about patient participation in their care

I am a physician who was diagnosed with throat cancer and underwent laryngectomy four years ago. Prior to being diagnosed and treated for cancer I did not welcome or encourage my patients’ participation in their own care. Admittedly, there were instances when such input was helpful, but more often I regarded patients with data based on information obtained from the Web as a challenge to my expertise and authority.   I often felt frustrated when I had to explain why the information provided was inaccurate or not relevant to their illness.

After being diagnosed and treated for a serious illness myself, I changed my perspective about patient participation in their care. I often experienced shortcomings in the medical and surgical care I received.  There were many instances when my physicians failed to diagnose or correctly treat medical conditions, where my input that was based on information I got from the Web was instrumental in improving my care.

For example, I developed extremely high blood pressure about sixteen months after receiving radiation treatment to my neck and was initially diagnosed with “essential hypertension,” the most common cause of high blood pressure in individuals over the age of 65. Although I suspected that the radiation I had received lead to the development of hypertension, my physicians dismissed my theory. I started to check my blood pressure myself and noticing that it frequently spiked to over 190/110. After my physicians were unable to arrive at the correct diagnosis and treatment for this unstable blood pressure, I started searching the Web for answers. I was fortunate to discover a rare entity called “paroxysmal hypertension” to explain my symptoms. Such blood pressure instability  can result from radiation damage to the carotid artery baroreceptors which regulate the blood pressure. Only after I contacted an expert physician who had done extensive research on this topic did I finally receive adequate treatment for a potentially life threatening condition.

In another case, I had developed  a rash while being treated with a beta blocker (Inderal) given to me to reduce my blood pressure. A skin biopsy labeled the rash as psoriasis. Neither my cardiologist nor my dermatologist made a connection between the medication I was taking and the rash. While searching Google Images for pictures of a psoriatic rash, I found a picture of a rash labeled as “beta-blocker psoriatic like rash” which led me to suspect a connection between my medication and the rash. Further reading led me to understand that this is a rare side effect of taking a beta-blocker.  When I consulted my dermatologist and cardiologist they admitted that they had not thought about it. Fortunately my rash subsided after I stopped taking the medication.

My experience as a patient taught me the limitations of medical knowledge and experience of many of my colleagues. They simply do not always know all the answers or perhaps don’t think about them. It is left for the patient to help himself by searching for the right answer. It is also essential to remember that even those of us who have medical knowledge should only assist the experts in treating us and should not always do so alone.

Itzhak Brook is a professor of pediatrics, Georgetown University School of Medicine and author of the book My Voice: A Physician’s Personal Experience With Throat Cancer and In the Sands of Sinai: A Physician’s Account of the Yom Kippur War. He blogs at My Voice.

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  • Fred Dempster

    My wife’s doctors encouraged both of us to self-educate from the Internet when she was diagnosed with breast cancer some 10+ years ago – - with a caution of some sites to visit and some to stay away from. We found this instrumental in preparing for the entire process, and also allowed quick entry into some clinical studies (e.g. Herceptin) underway that are now common practice.

  • sFord48

    My experience is that doctors want to put you in a convenient box so they can move on to the next patient.  I suffered many years before I realized that I needed to make the diagnosis and formulate a treatment plan on my own.

  • Shikseh

    As a patient and NOT a physician I can say that the best doctor I ever had was a doctor who admitted that she didn’t know everything; she knew a lot but not everything.  When I had a question she couldn’t answer, she went home at night and studied up on the issue and then would contact me the next day.  I loved her and recommend her to everyone I came across that was looking for a good family physician. 

  • LastoftheZucchiniFlowers

    That Dr. Brooks, himself an expert, was treated so poorly by his ‘colleagues’ is testament to misplaced hubris in our own ranks.  Surgeons of the ‘old school’ who rush from patient to patient, detesting the idea of seeing patients in clinic because it keeps them from the OR, MUST change and/or be replaced by surgeons who have an authentic concern in the post operative AND post discharge course of their patients and don’t consider ‘listening’ a waste of their time, better served by nurses or hospitalists.

  • http://www.facebook.com/mdoino1 Mari Doino

    It takes a big man to understand his previous failings.  This article clearly demonstrates the shortcomings, Hubris, and ignorance many Doctors have.  I have been a patient now for 10 years, with a spina; chord disorder.  I have been ignored invalidated, and made to feel worse after speaking with a Physician.  I have had to do a lot of my own research, which is usually ignored by my Physicains.  I am on Medicare/Medicaid, so I also feel treated differently, than patient with good insurance.  I cannot communicate with my current PCP, but t find another is seemingly impoosible.  I don’t even try to talk to him, other than niceties, and getting my prescriptions.  I ma having reactions to these Meds, but the thought of putting him through reauthorization woth the Insurance Company fills us both with dread. 
    I am getting worse, yet I cannot get any kind of help.  I went to A university Clinic and was dismmissed.  I tried and tried to get a diagnosis for my neck pain, I was told it was stress, 3 years later I found out I had no cartilage in my neck, and I have permanent nerve damge in my arm.  This was becaue I was ignored by at least 5 different Physicians.  I ruptured a disc in my lumbar spine, this was misdiagnosed as Female trouble, mental, I was refused any kind of diagnostic.  I was in an ER unable to stand up straight, and was threatened with jail!  Becasue of that I went several years as the disc material ate away at my nerves.  Even with a limp, and foot drop these syptoms were ignored. 
    I undrstand I have to live with pain, but it is more distressing dealing with these Doctors who are so smug and condescending!   I have been traumatized by them!   I have bene subjected to painful unnesecary proceedures, like the Nerve Conduction test, only becasue Meidcare pays for it.   As I lay there with the Electrical impulses running up my leg, I asked my Neurologist,  Is the nerve still dead?  Of course it is.  She has an antique model from the 50′s.  I have a dead nerve in my leg still, yet the issues I went to discvus with her were ignored, because Medicare pays for that proceedure!
    It is refreshing to hear a Physician talk about being ignored just like I am, and having to do is own research!

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