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