MGordon_MD
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Apr 23, 2010, 11:20 AM
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Narrative Ethics: A Place for “Me” - from his book Moments that Matter
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By Dr. Michael Gordon
In the past few years, partially in reaction to what is often called the principlist approach to ethics in which the focus of ethical decision-making is on the four principles; autonomy, beneficence, non-maleficence, and justice, the focus on the individual’s narrative or story has developed. This has been a countervailing force to balance some of the observed deficiencies in principlism as the commonly used approach to ethical decision-making.
The essence of narrative ethics is that by delving into the person’s “story”, meanings may come forth that may give a greater insight and understanding than a focus on the standard ethical principles might provide.
An example of a case I was involved with some years ago should help illustrate this concept. Mrs. F was 86 years old and had been a patient of mine for almost five years while she lived in a retirement home attached to the geriatric complex in which I worked. I was requested to see her because she had refused an offer of dialysis for chronic renal (kidney) failure.
“I’m old and have no one left in the world that is close to me. What reason is there to live?”
This is what she said to me when I asked her why she had declined dialysis. She was a Polish immigrant, widow, and childless, as the children she had from her first marriage perished in the Holocaust. Without dialysis she would die.
“You know that I lost all of my family in the Holocaust. I had a husband and two children who were eight and five at the time that they were taken from me. I remarried after the war to a Canadian man who came from a town near my own in Poland, but before the war. We did not have any children, and he died more than 12 years ago.
I have been alone ever since. I worked as a seamstress but could not continue because of poor vision, and within five years of his death I stopped working, living on a modest pension from his work and some reparations from Germany. The only person left is a distant cousin, who lives in Ottawa, Ontario, whom I haven’t seen in four years, and she is quite ill herself.”
As Mrs. F revealed more personal reflections about her own values, beliefs, and memories, woven into a fairly coherent narrative spanning several decades, there was a special space opened between us, and a different kind of knowing, for both of us, became possible. She was not simply a “patient with renal failure” but a person with layers of stories, memories, and meaningful experiences important for me to know something about.
The nurses and the attending physician had referred Mrs. F. to me to see if I could “convince” her to agree to dialysis, as I had known her since the time she moved into the retirement home. It was I who had referred her to the nephrologists (kidney specialist) some years before. After a psychiatric consultation, which refuted a diagnosis of possible depression, the feeling was that she was mentally capable of making her decision to forgo dialysis. She understood the potential benefits of treatment and the implications of refusal. I did my best to understand Mrs. F’s life story and why she would refuse what was likely to be a life-saving treatment. I began as we spoke to understand her deep loneliness and sense of loss and absence of meaning to her life with no real connections of importance.
When Mrs. F asked, me “What is there to live for?” I responded while alone with her in her hospital room: “For me.” She looked at me quizzically and asked, “Why for you?” I replied, “I want you to live longer because I like you and because I think the world will be less rich a place without you.” She sat up more in bed and said, “Really?” in her strong Polish/Yiddish accent.
“Is that really so?” My reply was, “Yes. I have always enjoyed seeing you at the retirement home’s clinic and hearing from you about your experiences.” She had recounted many stories of her life in her native Poland and her Holocaust experience, and how she had overcome the challenges when she arrived in Canada in her mid-30s.
She told me with pride how she struggled with English, found work, became involved in a group of like-minded friends, rebuilt her life with her second husband who then died, and how many of her friends were now old and frail like herself or had died.
She became a volunteer and loved helping disabled children and that had become the focus of her life before she moved into the retirement home when even that activity had become too much for her.
She looked at me and said, “You are a very nice doctor, and I would like to do this if it matters to you. But what if I am not happy with the treatment?”
I replied, “If after three months of dialysis, you are not happy, we will stop it and make sure that your final days are as peaceful and comfortable as possible.” She replied, “I will give it a try.”
The dialysis was successful and only after four years did she decide that it had become too much of a burden and we together with her nephrologist decided to discontinue the treatment and allow her to die peacefully.
This is an example of where if the standard ethical principle of autonomy would have been allowed to determine the course of her care, her initial refusal of the proposed treatment within a context of apparent cognitive competence would have resulted in her death four years previously. It was the pursuit of her “story” and what was meaningful in her life—that is relationships that allowed her to try the treatment which proved to be effective and acceptable to her for a period of four years. Her narrative allowed me to find the entrance of meaning into her life.
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Dr. Michael Gordon is Medical Program Director, Palliative Care Baycrest Geriatric Health Care System in Toronto, Canada and Professor of Medicine, at the University of Toronto.
Dr. Gordon is the author of the engaging memoir Brooklyn Beginnings: A Geriatrician's Odyssey, published by I-Universe.
Brooklyn Beginnings is available in bookstores and online at: Indigo-Chapters, Amazon.ca, Amazon.com, Barnes and Noble and I-Universe
Moments That Matter: Cases in Ethical Eldercare: A Guide for Family Members, is available online at Amazon.ca.
His latest release is Late-Stage Dementia: providing comfort, compassion and care. It is available at Amazon and Indigo.
Visit Dr. Michael Gordon's website.
(This post was edited by MGordon_MD on Apr 23, 2010, 11:36 AM)
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