This is a post about death, but really a post about life. It’s about a doctor who works with the dying but whose method of treating them can be applied to all, young and old. It is really a story about stories, how we all have them tucked within us, yet how they are often transformed with the passage of time and the living of life.
Dr. Harvey Chochinov, who I first heard of in an article by Alix Spiegel, is the author of a study called “Thinking Outside the Box: Depression, Hope, and Meaning at the End of Life.” A psychiatrist, he works with the terminally ill, and strives to come up with novel ways to ease their pain and difficulties while increasing their sense of well-being as they approach death (palliative care 101 for those who have the good fortune not to have lost a close friend or loved one).
Yet rather than just follow the standard model of diagnosis and treatment, which he admits to be “…like boxes,” which “provide a neat and readily available place to put things,” he tries to think outside it, or dig deep to find what lies beneath, rejecting the easy route wherein there is a “comfort level in being able to categorize, label, pigeonhole—file and save—that can sometimes contaminate or even supercede the often more nebulous task of coming to a real appreciation of the patient’s inner experience.” He doesn’t try to surmise or interpret this, but simply to draw it out from the patient himself.
In his article, the doctor describes a patient whose cancer had robbed him of part of his tongue and neck, the ability to “manage” his secretions and to eat any other way than through a tube. Understandably he suffered from depression, insomnia… But of course, we think, how would he not be depressed by all this plus the fact that he knew himself to be dying (which we all are, I suppose, to greater or lesser extent, but when our bodies start to betray us it becomes harder and harder to distract ourselves from this inevitability).
Dr. Chochinov delved deeper, discovering the past of this elderly man now decimated by carcinoma. He was, it turned out, a classical violinist who had performed with the greatest orchestras and the greatest of musicians. He was handsome and elegant in his day, before the cancer ate away at his body, leaving him saddened and depressed and—due to the surgeries—unable to play his beloved violin. He, like many patients facing such a dismal diagnosis, thought often of welcoming or even accelerating his end.
Loss of hope, dignity, purpose… fear of death, of being a burden, of pain… these are common threads, but what Dr. Chochinov discovered in his search for new boxes was that something critical to one’s dignity in many of these patients was how they “perceived themselves to be seen.” We care how others see us, and draw from that our own sense of worth.
Now here’s where it gets good…
From this came what the doctor calls “The Dignity Model in the Terminally Ill” and “dignity psychotherapy.” This treatment does not involve pills or physical treatment but has at its core one of the most simple concepts imaginable: listen to their stories, ask them what is most important to them, when they felt the proudest or happiest, how they would want to be remembered. These discussions are then recorded, edited for clarity and their words are returned to them so that they might read them and pass them along to those they leave behind. Simple. Lovely. Tell me your story. It worked.
In the same way we craft our appearance by how we dress, with whom we associate, what positions we seek, we continue to wish that others see us not necessarily as we are, or as we seem, but as we see ourselves.
Dr. Chochinov’s theories are perhaps most beautifully illustrated not in his research notes, but in his recounting of the last time he saw this patient, the violinist who he calls “Jacques” in his article, a made-up name he felt best fit the image this dying man wished to project…
I last saw Jacques a few days before he died. He was in the hospital at the time, vaguely confused but nevertheless aware of who I was and that I sensed his recent, grave deterioration in health. During our last visit, I was thinking about the notion of Jacques’ dignity, and the extent to which preconceived models or boxes had failed to encapsulate the full extent of his suffering. I recall the presence of a nurse at the foot of his bed, attending to charting or some such mechanical task. Turning to her, I said, “Did you know that Jacques was a professional musician? He played viola with all the world’s finest orchestras and musicians, including the likes of Leonard Bernstein, Herbert Von Karajan, Jean-Pierre Rampal, Vladimir Ashkenazy, and Glen Gould.” (I must admit, those that I could not remember I simply made up.) The effect was immediate and, I thought, profound. Jacques broke out in a full body blush, and a smile his face could barely contain. Later that morning, I overheard his nurse sharing the impressive details of Jacques’ glorious past with one of her colleagues. He was no longer simply an elderly male with an oral malignancy and secondary complications, admitted for palliative care, but someone deserved of honor, respect, and esteem—words corresponding to the definition of dignity itself.
See me not as I am in the mirror, or as you wish me to be. See me in my words, in what I choose to tell you and how I tell it.
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Stories do not have to wait to be told at the end of life. Telling them, and listening to them feed us all on so many levels.
Listen to the stories of your loved ones, of your friends and your neighbors and even of strangers. Coax them out and, if you can, document them. Through words, through words crafted into stories, we live.