Do You Want to be a Consumer or a Patient?

Last week, I was annoyed by a few newspaper articles in which those persons using health care services were called “consumers”.

I’ve had enough of that.

I want the people using health care services to be called “patients” again.
What is a “consumer”?

My Canadian Oxford Dictionary defines “consumer” as “a person who purchases goods or services for personal use”.

Many of the people who see doctors or go to hospitals are not there by choice. They are there because they have no choice but to have access to the “goods or services” of medical treatment. The word “consumer” does not describe their role.

More importantly, I want patients to know that, in so far as “consumer” implies a relationship, I am not someone “selling” or even offering “goods or services”.

The treatment of a medical condition unfortunately implies that a person’s health is compromised. The remedy is not usually straightforward, not usually just an exchange between someone offering a service and a “consumer” of a “good” or “service”. This kind of transaction implies that there is a choice about the “good” or “service”. To the extent that this is the case, it’s never a good choice.

So I’d like to have the language we use about health care, the language that we use about the person entering my office, to remind them and me that the “goods or services” I am offering are provided with a concern for their welfare that goes far beyond the goals of any shopkeeper or tradesperson. I want language to remind them and me that they are in my office, in a hospital to “receive care”.

I want everyone to recognize that I strive to go beyond a business transaction in what I do.

I want those people who enter my office, distressed and unwell, to be called “patients”.

Photo Credit

The Answer

I have not written much all summer because there is only one medical story on my mind. I have resisted publishing this story until I had something to say that might be helpful for others in a similar situation. Recently, one realization comes back to me again and again and for that reason I write about it now.
My beautiful baby sister is dying. I have been travelling to Halifax to spend time with her, knitting and talking while she lays in bed. I spend the days after these visits with a heartache that will not stop and I find now that I cannot stop thinking about her.
My sister has lived at least five years longer than her doctors thought she would. She has been able to see her daughter start and almost finish nursing school. She was happy to have been well enough to attend our mother’s funeral. If she has any pain, she minimizes it. If she has suffered any distress, she hides it behind her sense of humour. She is suffering from visual hallucinations, likely because of medication. Her thoughts on this: “At least it gives me something interesting to watch.” She is a true believer in positive thinking.
My sister is a great raconteur and she spends these Saturdays telling me the stories of her life. She talks of her friends from elementary school, high school and nursing school, most of whom she has found on Facebook. I am trying to write down what she tells me. When I read it back to her, she listens to my account and says, “Stick with quilting for a hobby.” She laughs at her own joke and then reminds me of how bad a baker I used to be. She tells me about patients she had cared for as a nurse and about how the most important parts of nursing involve “no science at all”. In the middle of one story, she stops and says to me, “I am so glad to see you. I don’t want you to be sad, you know.” I do not want to cry and the heartache inside me intensifies.
I have been contemplating how I will be a comfort to her. I want to be a welcome visitor regularly for as long as possible. It is easy for me to listen, as this is something I do most days at work. I only rarely struggle with people’s painful, emotional stories at work, but my sister is not my work. I have always been very good at separating work from family and, as much as I am diligent at work, I believe that my family needs me not to be a doctor, but someone better. Not that I don’t think being a doctor is important, but I really want to be a good sister in this time when she needs a sister.
This experience with my sister helps me to understand what it is like to be relying on doctors and nurses, how helpless one can feel, even when one has great knowledge. I find myself asking: “Do I remember how helpless a patient or their family member feels when I am speaking with them?” I know that my excessive emotional investment in a person’s care can lead me to errors – mostly sins of commission, rather than omission – but do I do what I can to help people feel at ease with being helpless?
I have been remembering the first time one of my patients died in my internal medicine rotation as a medical student. She was an older lady not expected to live. Her family took turns sitting at her bedside, day and night. I remember stopping to speak with them, day and night, getting them coffee or bringing them things to read or answering questions. I felt so badly because there was nothing I could do. I would sit with them and listen to their stories of their mother.
Thinking of my sister, I read through my journals of the six weeks I spent with this family and realized that I had the answer all those years ago, when I believed I had no answers at all. What on earth happens to doctors over the years that, as we become less helpless professionally, we seem to lose all the answers?

(Note: This is an image of Lawrencetown Beach, the Nova Scotia beach closest to my sister’s home.)

Book Review: A Memoir About MS

How would you cope if you or a loved one were suddenly struck with a condition that would affect the rest of your life? That would probably not get better and that would likely get worse? That is what happened to Richard Cohen at the age of 25 when he learned that he had Multiple Sclerosis. His memoir Blindsided: Lifting a Life Above Illness, A Reluctant Memoir tells us how he lived with this progressive disease for 30 years of his life. The span of his life that it covers is one of the ways in which this book is remarkable. You will really learn what it is like to live with Multiple Sclerosis.

Another important aspect of his account is that Cohen is not always “good” at dealing with his condition and the title of the book tells us how he felt when he learned about his condition. He also situates the reader into the paradigm of a privileged man of his generation:

“The trouble with men is that we cannot forget that once we were boys. And boys see their lives   as cinemas until we are forced to grow up, to walk away from the theatres in our heads and go home to reality.” (pp. 30-31)

As Cohen discusses the period in which he first accepted his illness, what he stated crystallized for me what a patient’s role is in the treatment of their illness:

“Attitude is not to be easily dismissed as a source of power and influence governing the course of a disease.” (p.141)

This one sentence says a great deal about what a patient must strive for when they learn they have a chronic illness. That attitude is likely best fostered by empowerment – hence the success of Cognitive Therapy models in treating mental illnesses. This statement also supports the view that education, support for patients and families and other resources likely also help patients develop the best attitude to treatment.

Cohen’s profession was also a hindrance to his treatment. The chapters that describe his life as a journalist, specifically a television news producer in the 70’s and 80’s reveal the true biases of that world at that time. Also, journalism certainly did not help Cohen develop the attitude that he came to realize was necessary for him to have to best manage his illness in the context of a very full life. Cohen lied to remain at work and to advance. In fact, he was advised to do so by the few friends who knew he has MS:

“So much of what I had learned about journalism had to do with basic honesty and full disclosure. Yet there I was, about to perform a dishonest act to inaugurate my relationship with an institution built around honesty.” (pp. 63-64)

We follow Cohen through the life stages of moving into a committed relationship, having children, moving out of Manhattan – all in the context of ever worsening Multiple Sclerosis. In case you’re thinking, “Well, now it gets boring,” Cohen’s life takes another twist when he learns he has cancer. In final chapters, Cohen considers how his children and his wife have managed his worsening and developing illnesses. His account of these life struggles is nuanced for the reader by the fact that Cohen and his wife, Meredith Vieira, are giants in the United States world of journalism and so much of their coping is ultimately in the public domain. Cohen emphasizes that it is only after many years that he finally realizes that resilience is fostered by an active role in his own treatment:

“The moment was sobering. A new era had to begin. Coping evolves. It was time to take charge and stop making a monkey of myself. There is work to be done. Trying to sneak away from the truth worked for a long time but now seemed foolish. Adulthood must be learned anew from time to time.” (p.233)

(The page numbers are taken from the Harper Collins first edition of this book, published in 2004, New York.)cropped-cropped-photo-3.jpg