Archive for the ‘Andrew Robinson’ Category

Dear Dr. ___[my surgeon],

Andrew Robinson
Wednesday, March 28th, 2012

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 Dr. ___[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

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Guest Blog: Hard Cold Facts, or Hard Cold Doctors?

Andrew Robinson
Thursday, November 10th, 2011

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. Because of complications from a bone marrow transplant and a diagnosis of a second cancer, Andrew’s struggle as a patient continues. He has spoken at medical conferences throughout the U.S. on a patient’s perspective on health care. He is currently working on a book based on his approach as a patient, entitled The Patient Will See You Now™.

horizontalline

The beginning of my illness provided a perfect contrast between a “Hard Cold Doctor” and a “Heart Felt Doctor.”

I was first diagnosed with leukemia while travelling on a vacation in 1994. I had a persistent respiratory infection so I went to a local emergency room to get an antibiotic. I had the usual tests, including a blood test. A doctor came into the room where I was waiting and introduced himself as an oncologist. He told me that the blood test showed that I had “a terminal and incurable form of leukemia” and “less than five years to live.” Just like that. He also added that I didn’t need to rush back to New York, as there was nothing to be done.

A few months later, I sat in an office in New York of an oncologist who specialized in my form of leukemia. His manner was soft-spoken and warm. He told me that although there was no cure for my disease, there were a number of relatively mild chemotherapies that were effective in extending patients’ lives for many years, and that given developments in research, during the additional time there may well be a cure for my illness.

It turns out that the second doctor was correct. Five years after being diagnosed, bone marrow transplants became available for people my age with chronic leukemia. I had a transplant and a few years after that there was no longer any sign of the disease.

When I inquired with physician friends about my experience with the first doctor, they spoke of doctors’ fear of instilling in patients “false hope.” In my interactions with many cancer patients, I have yet to hear of any patient who felt they were given false hope. But there were many instances of patients, like myself, who were filled with “false despair.”

Now, I can’t imagine how difficult it must be to be an oncologist, to have to tell patients that they have a terminal illness, to see them go through brutal chemotherapies, to see them die. According to one estimate, during the course of their career, an oncologist will break bad news to their patients almost 20,000 times – from first diagnosis to the news that death is near. Yet, many doctors who approach this task in a cold-hearted manner seem to justify themselves with a “tell it like it is” philosophy. Easy for them, devastating for us.

Medical science readily acknowledges the placebo effect – that many patients who believe they are getting an effective medicine show improvement in their condition even when they are in fact not getting the medicine, but are instead receiving a harmless substitute. If the effect of a patient’s positive expectations can so profoundly affect his health, what then is the impact when a patient is, from the outset, given the difficult news about having cancer in a manner that so discourages his spirit?

Most lay people know the fundamental maxim of Hippocrates to physicians throughout the centuries: “First, do no harm.” This has always been understood to have to do with the medicines and treatments that physicians prescribe. In this day and age it applies equally to how doctors talk to and act toward their patients.

horizontalline

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Guest Blog: Uncoordinated Care

Andrew Robinson
Friday, September 30th, 2011

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. Because of complications from a bone marrow transplant and a diagnosis of a second cancer, Andrew’s struggle as a patient continues. Andrew has spoken at medical conferences throughout the US on a patient’s perspective on health care. He is currently working on a book based on his approach as a patient, entitled The Patient Will See You Now.™

horizontalline

I sit looking at the phone. I’m having a medical problem that needs attention, but I don’t know who to call. Here’s why:

For over 15 years I have been a leukemia, post-leukemia and now once again, a cancer patient. Before my illness I was a New York City trial attorney. I brought those skills to my illness and treatment – the questioning, the thinking, and the forcefulness. I have no problem picking up the phone or sending long emails to my doctors. Working with them, arguing with them, coming up with ideas and solutions. But now, I don’t know who to call.

I was first diagnosed at age 36, Out of the blue – told that I had an incurable form of Leukemia and less than 5 years to live. I tried every available chemotherapy, modified gene therapy, two alternative programs –  none had any effect on the disease. When my doctors told me they had nothing left to offer I found out about a novel form of bone marrow transplant in Israel.

So I moved there with my family for a three month treatment. Due to complication we were there for a year and one-half. Because of high dose steroids both before and after the transplant my back fractured and collapsed.  Eventually my shoulders, elbows and knees all fractured.

All during that time, if I was faced with a problem, I had one primary physician in charge of my treatment. So I knew who to call.

After returning to the US, slowly, but surely, the transplant worked. Over a period of two years my white blood count dropped until it reached the normal range: there was no trace of leukemia. I am a living miracle.

But the complications continued – with auto-immune/ Graft Versus Host Disease (GVHD) problems, infections, dozens of hospitalizations, cataract surgery, double-knee replacement surgery, an exploratory laparotomy…

All this time I have fended for myself in the medical jungle – worked my way through the problems with the help of some tremendous doctors and nurses, family and friends. But things have changed.

Last winter I was diagnosed with tongue cancer. I was suddenly plunged into a whole new realm of doctors, treatments, tests, medications. It felt like I had been transferred to the medical equivalent of the tower of Babel – everyone spoke a different language than I was used to.

I estimate there are a dozen doctors currently involved in my care. My list of medical and emergency contacts, my doctors, their phone numbers and emails, their nurses and office assistants and their emails, four different pharmacies, three different medical supply companies – fills up six pages of notes.

So here I am, looking at the phone and my six pages of notes. I am having a medical problem. It may be severe, and I don’t know who to call.

The reconstructive surgery after my tongue surgery did not go well. So I was left with a hole in the newly built bottom of my mouth and another hole in my neck. Now I am having pain in this area of the bottom of my mouth and some bleeding. It could be related to the surgery, or the plastic surgery, it could be an autoimmune/GVHD reaction or a side-effect from my chemotherapy. Or something else.

The problem is that no one is coordinating my care. Because my bone marrow transplant doctor doesn’t know about tongue cancer and reconstructive surgery; my chemotherapy doctor doesn’t know about mouth GVHD; the surgeon doesn’t know either…

Hopefully, this is a minor problem. Because as difficult as this is, when complications set in after my surgery — pneumonia, infections, blood clots —  my family had no idea who to talk to.  One set of doctors would set out orders. Another set would change or modify the orders. A third set would suggest other changes. There was no one coordinating my care.

But towards the end of my hospitalization something changed. A clinical nurse practitioner stepped in and acted as a go-between between my family and the doctors. She took our questions and concerns and she tracked down the doctors to get the answers we needed. Speaking to the different specialists she helped to clarify and coordinate my treatments.  It was a revelation as to how the system could work for a patient like me with complicated problems running across different specialties.

But that was in the hospital. I don’t have anyone like that now. And I am not unique. There are millions of patients in the US who have multiple chronic and life threatening conditions which makes caring for us extremely complex. Because so much of our care is rendered by specialists, we end up needing someone to act as a coordinator within the system who can help to make sure that the care we are receiving is consistent and coordinated.

I have a terrific internist but his responsibility is not to coordinate my care – and I can’t imagine where he would find the time to do so. What I need is someone a who can coordinate my care as an outpatient – just like the nurse practitioner who coordinated my care when I was in the hospital. Unfortunately there is no one who has this responsibility.

So here I sit, looking at the phone and I don’t know who to call. Well, it’s not so bad. Maybe it will get better. Let’s give it another day and see what happens.

horizontalline

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