This post was first published first on Prepared Patient Forum blog on 3/28/2012.   It was sent to me by my friend and fellow TDWIan Michael Millenson. Reading it provoked a mixture of anger and shame. How did we educate a generation of doctors so callous, so unprofessional? If we tolerate this kind of inexcusable behavior on the part of what is supposed to be the healing profession, we will have only ourselves to blame. —Dov Michaeli, MD, Ph.D

Here is the introduction by Jesse Gruman, host of the Prepared Patient Forum:

Andrew Robinson was a successful New York trial attorney when he was diagnosed with “an incurable form of Leukemia” and told he had “less than five years to live.” That was more than 15 years ago. Despite severe complications, including over 50 hospitalizations, Andrew was the founder and CEO of Patient2Patient, a mission based company that developed disease specific WebGuides to help patients learn how to locate and use the medical information, resources and tools available on the Internet.

Andy is a friend, a playwright, a humorist, a blogger and a veteran of many cancer diagnoses and treatments. Andy embodies the ideal participator in Participatory Medicine. He is an informed, active and curious person who has found ways of working with a wide variety of specialist physicians over the years to devise strategies that allow him to remain as healthy and functional as he can.

Recently Andy copied me on the following letter to the surgeon who performed his recent surgery. It was disheartening to hear that my friend had been treated so badly, especially at a time when a good deal of attention is directed toward improving the doctor-patient relationship. His effort to convey both his gratitude and his concerns about his care to his surgeon are on point: they are detailed and direct but without rancor. Please take a look. – Jessie Gruman, CFAH President

Dear Doctor-____(My Surgeon)

I understand you are leaving [this hospital]. I hope your new position at [a different hospital] goes well.

I appreciate all of your efforts on my behalf. By way of wishing you well, here are some thoughts that might help you in your new position:

I have some idea of the surgery you performed, but it’s still not clear to me exactly what happened because you never discussed it with me. And you never told me that the biopsy report revealed that there was a spread of disease beyond your dissection. Instead, I found it out when I received a call from the radiation oncologist telling me I needed to come in for radiation because the disease had spread.

You can’t imagine how devastating that news was, especially when it was delivered liked this. I still don’t know why you didn’t tell me yourself or if you were ever planning to tell me.

[Patients need to hear about the results of tests, procedures and surgeries from their own doctor, even when the news is bad].

During my agonizing six weeks in the hospital, you wouldn’t come into my hospital room. You kept complimenting me on how I came through everything, but because of the surgery and my inability to turn my head, I often wasn’t able to see you or could do so only with a lot difficulty and pain. So those compliments didn’t help much. With everything I was going through you weren’t willing to take an extra 45 seconds to put on a mask, gloves and robe and for you to take the time to talk to me face to face.

[Patients need to be able to look their doctor in the eye, in person, when discussing their situation, especially when, like me, they are gravely ill.]

This was after your initial misdiagnosis which was only averted through Dr. P’s insistence that you have me tested. And it was in the midst of all the emotional difficulties I experienced by being first told that I did not have cancer, and then, after further testing, finding out that I in fact did have cancer.

[Patients need their doctors to acknowledge their errors.]

As a patient with lots of experience of cancer and cancer treatment, I know that the foundation of medical care is “First – Do No Harm.” Do you believe that the harm you can cause is limited to the surgery itself? I encourage you to expand your thinking and use your imagination: try to care for the whole person, the whole patient.

I was not being facetious at the beginning of this letter when I thanked you for all of your efforts on my behalf. Prior to surgery I know that you had many conversations and emails about my condition, even while you were on vacation. And I know you exercised your skill as a surgeon, which you have developed over many long years of practice. But I leave this relationship feeling that you have treated me thoughtlessly and disrespectfully and have left me with much unnecessary emotional trauma.

I sincerely hope you will make an effort to do better with your future patients.

As I said, good luck.

Andrew

 

Dov Michaeli, MD, PhD
Dov Michaeli, MD, PhD loves to write about the brain and human behavior as well as translate complicated basic science concepts into entertainment for the rest of us. He was a professor at the University of California San Francisco before leaving to enter the world of biotech. He served as the Chief Medical Officer of biotech companies, including Aphton Corporation. He also founded and served as the CEO of Madah Medica, an early stage biotech company developing products to improve post-surgical pain control. He is now retired and enjoys working out, following the stock market, travelling the world, and, of course, writing for TDWI.

3 COMMENTS

  1. Andrew, Dov Michaeli, MD, Ph.D, and Jessie Gruman, CFAH President-

    Thank you all for sharing this story. Andrew, I too was traumatized by a surgeon’s behavior. I know the emotional pain that consumes and lingers for years in spite of trying our best to be good human beings. It’s so sad and so very difficult.

    Here’s my story:

    I had LRQ pain in my lower groin area for months. A CT scan revealed a 1″ fibroid. I was referred to a gynecologist/oncologist.

    The doctor told me I did not have cancer, and told me repeatedly – time after time after time – that if the pain got too bad, he would go in and grab the fibroid. He would perform a myomectomy.

    He said he wanted to take a closer look and make sure it wasn’t cancer, and ordered a 2nd vaginal ultrasound (I had one before I had the CT scan). He said because the fibroid was in the lining (intramural fibroid), he would have to take out my uterus. I cried when he mentioned hysterectomy. He told me I could wait for menopause or have the surgery. I had asked for pain medication and was refused. He said, “Surgery is better than popping narcotics”. I told him I had changed jobs and I was failing. He told me to follow up in 3 months. I told him I could not live with the pain for 3 more weeks, much less 3 more months.

    The pain became unbearable so, because I had no other options, I called for a surgery consultation. I was lying on the examination table in obvious pain. The surgeon came in and only looked at the stickie note on my file. He read “It says you want surgery.” I agreed and then he just repeated himself, “It says you want surgery.”

    He asked to look at my stomach, wrote something on a paper, and left without saying another word. I asked his nurse several times “What does total hysterectomy mean?” once I read the paper and each time she did not answer. I now know it means removal of the uterus AND cervix. I never knew he was taking my cervix. Now my vaginal canal is changed for every. It’s in the shape of a sock.

    As soon as I got back to my hospital room, I started asking the nurses time and time again, “Why does my right side still hurt? That’s why I had the surgery.” I refused to lie on my right side because of the pain.

    He discharged me and wrote in his notes that abdomen wounds looked fine. How could he possibly know? He never even looked at my stomach or approached the bed. He stood feet away from the bed, spoke briefly and left.

    About 2 weeks into my recovery, I ran out of pain medication and called my surgeon and left a message. They never called me back nor did they call in a prescription to my pharmacy.

    The pain was so bad that I went to Urgent Care. The physician assistant was so concerned about the amount of pain I was in I was triaged. I told him my surgeon had not called me back and he asked for his number. He called but had to speak to my surgeon’s practice parter. His partner told me to either go to a hospital for a CT scan now or go see my surgeon first thing in the morning.

    My mother and I went to the surgeon’s office early the next day. I heard my surgeon say, “What is SHE doing here?” And one of the staffers said his partner told me to come in. My surgeon said, “Now is not a good time.” BTW, I know he was talking about me because I was the only patient in the waiting room.

    When we got to the exam room, he came in a said in an yelled at me while waiving his arm in the air, “You saw the pathology, Judy, you know it was there!” I asked him what were the chances of surgery being successful if I had the same pain, in the same location, at the same intensity.” He said a terse and angry, “very little.” I told him I was scared because I was in no pay status and he said, “You have pay, you have no pay, Judy, you have psycho social issues.”

    In his office notes he said my abdomen woulds were healing nicely, and once again, he never even looked at my stomach. He wrote in his notes that my pain was probably post-operative. His partner and the physician assistant both said there is no way I should be in that much pain.

    Turns out I had a right inguinal hernia that was pushing out on the ilioinguinal nerve that was causing the severe pain in my lower right quadrant.

    How did my first surgeon make such a mistake? How did he think a one inch fibroid could cause that much pain that I had reported for months? Why didn’t he offer me other treatments options for a one inch fibroid? I resisted a hysterectomy a number of times because I did NOT want one. But he gave me no other options.

    My mother said she had never seen a doctor be so cold and so cruel. So, after my unnecessary hysterectomy, I was in post-surgery pain, still have the LRQ acute and chronic pain, was in no-pay status, had used up all my sick time in my new job, was still failing at my new job and still had no answers as to what was causing my LRQ pain. Talk about a dark period. I was so scared and in so much pain.

    This story is bad enough on the existing facts. But when I got the surgeon’s office and hospital notes, I could not believe my eyes. I would shake uncontrollably when I read the what he wrote – it simply was not true.

    I lost my uterus for no reason at all and then treated cruelly by the man who took it from me.

    Thanks for listening.

  2. Great story as I had a very similar experience. I was feeling better than ever, but seemed to be losing weight with no effort – while I thought it was fantastic it seemed “weird”. Most lab work was fine, except for a SED rate test. I checked in for my appointment with the surgeon who would be doing a lymph node excision to help determine the reason for swollen lymph nodes and unusual blood test results when I was handed a binder and advised it was my “welcome kit” ….. I remember thinking how “strange” and “odd” this was. While I waited to be called, I paged through…..the first page my a place to record the names of “My Oncology Team”. I had never been told cancer was a possibility or the likely culprit. I was disagnosed with Stage IV Lymphoma and ended up having a year and half of chemotherapy and a stem cell transplant. What a super way to find out, don’t you think?!

  3. Very well said! And sadly very true. Doctors have lost and continue to lose their compassion. All doctors/providers should read this letter. In todays evolving healthcare it is no longer the quantity of patients cared for but the quality of care provided that counts and amzingly that quality of care effects the the patient outcome tremendously.

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