Too expert to ask why we distrust medical professionals

On Saturday, December 8th, I listened to a disappointing discussion on CBC’s Day 6 program about a growing trend of patients recording meetings and actions of doctors and nurses.

This has been in the news lately. Read this:

And hear the program here (the discussion starts at the 18:28 mark):

It was so disappointing because the expert was guessing at her conclusions, which seemed to be given greater weight than I thought valid. She admitted to the host that she was “surmising” since her research didn’t have her speaking with patients.

This is ridiculous; why in why in hell wouldn’t you talk to patients about why they were doing this?

This is so illustrative of the problems with health care in Canada. Health care experts and administrators are too arrogant to talk to patients and patient families. After all, what do those of us who have experienced the system know about it? We’re only lay people, so we couldn’t possibly understand the issues.

Rather than surmise the why, it would be simple to ask why, but there’s no money in a quick answer.

This bioethicist came across as dismissive and her arguments fatuous. She suggested that a recording could prove that a noisy nurses’ station was the cause for a patient not getting a good night’s sleep. Gawd forbid anyone ask the patient why they couldn’t sleep or believe what a patient has to say. This expert’s position is that if patients were going to record their doctors, rules had to be established to prevent things like recording in washrooms. For god’s sake, when are medical consultations held in washrooms?

And what is a medical consultation? It sounds orderly, planned and inclusive. In reality, most patients and their families are lucky to have a few sentences tossed at them by someone wearing a stethoscope striding out of a room or down a hallway.

Another expert from Calgary suggested patients might be inspired to record their doctors because of a bad experience, like being tortured. I know the world’s not always a safe place, but exactly how many Canadians have the experience of being tortured?

If there’s a lack of trust, maybe the experts should ask us why we distrust them?

On May 6, 2010, I had a meeting with two placement women at Valley Regional in Kentville. I was responsible for medical decisions for a family member who had been in hospital for eight months. I had been waiting nine weeks for these women to get back to me with information about long-term care placement. I was so disappointed by their inaction that I wrote them a three-page letter of my concerns and copied it to the Valley Regional Hospital’s site manager. The placement women claimed not to have received this hand-delivered letter and while the hospital manager acknowledged receiving it, in the three weeks she had the letter she hadn’t acted on it or so much as spoken to any of us to see if the problem had been resolved.

On this day these women asked to speak to me. Normally I take notes when talking to people, but on this day, I happened to tape the meeting. I was tired and taping was an easier way to ensure accuracy for the daily reports I sent to other members of the family and our family doctor. I always made notes of the day and provided a daily summary, in part, because of my journalistic background and because hospitals are stressful places. In the hospital you’re not only praying for positive news, but on the off-chance you find someone authorized to speak with you you can be swamped with contradictory opinions, information or excuses delivered in words or language the layperson doesn’t understand. But even when you understand, the medical side will try to convince you that you misunderstood. Believe me I did not misunderstand when five doctors on seven occasions told me there was no cancer, only to learn they were wrong.

So, for my experience it was a good thing I taped this meeting – and I held the recorder out in plain view – because after I left in disgust, these women ran to their manager claiming I had threatened them. The next morning I was called to a meeting with the hospital site manager (the one who had not acted on my letter of complaint), the nurse manager (a woman whose office was across from our family member’s room and who ignored me for three months) and the placement manager – a person I had repeatedly asked to meet and whose name I wasn’t even allowed to know. At this meeting I learned I had been accused of threatening the placement women. I pulled out my tape recorder and let them know the entire meeting was on tape. Their faces visibly fell and the tone of the meeting changed.

This episode made me so distrustful of our system that I refuse to be in any room with any woman working in health care without my recorder taping everything or without an impartial witness. This recording not only provided accuracy for the details of the discussion, it protected my reputation. Without this tape, this would be a situation of: they said, I said.

Two voices against one are not odds I like.

I have previously written about this experience on this page:

I am profoundly disappointed that the CBC would air what amounts to uninformed opinions of an expert who hasn’t done such basic research as asking patients why they feel the need to record consultations and experiences.

I am reminded of something a 16th century Swedish statesman, the Count of Sodermore, wrote: “Do you not know, my son, with how little wisdom the world is governed?”

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5 Responses to Too expert to ask why we distrust medical professionals

  1. Bruce Bishop says:

    Very thought-provoking. I wish I had taped the conversation I had with my late Father’s GP who had suggested that in his home country, people of a certain age were not ‘allowed’ to keep living. (At the time, I immediately started a search for a new GP who had more experience with geriatric care. I was lucky to find one before my Father died.)

  2. Mary says:

    What it all boils down to is lack of patient centred care which we hear a lot about. I have to admit the system lacks this. We are always talking about this and say we are trying to attain this level but never seem to get close. If most health care providers were in a private business that requires client satisfaction to keep operating, they wouldn’t last a week.

    I am saying this from being in the profession for 40 years and watching so called change for the better. In my opinion we are getting farther away from this ideal all the time.

  3. Have to say taping is becoming more popular and I think it is a great idea. I had a man who interviewed me on the condition of his Mom. His sister lived in Ont and was a nurse and he thought I could give her the words she would want rather than his layman’s terms. I thought it was a great idea.

  4. Bill Swan says:

    You may want to see my comments on this “Wondering How to Engage Patients? Ummm…Maybe You Should Start with the Patient!”

  5. Years ago I had an operation in a private hospital in Australia. I was in a fog, recovering, when the surgeon dropped by to give me instructions to follow upon my release (later that day). When I got home, I couldn’t be sure whether the instructions were real or just a dream!

    It would probably have been better for the surgeon to give me a note… since I was in no condition to operate a tape recorder! Anyway, I bungled through.

    Frankly, it can be just plain difficult to take in all the relevant technical details of a medical consultation, even at the best of times. A proper record helps patients to analyze and understand their own condition, to collaborate in their treatment. Some doctors will go out of their way to help a patient to help themselves.

    Back to the CBC, I heard the same program and had a similar “reaction”. I sometimes choke on what ethicists would impose upon us.

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