Surgeon Atul Gawande’s book, Being Mortal: Medicine and What Matters in the End, has a lot to say about the unintended consequences of doctors’ failure to acknowledge the dying process. Here’s a case of a young woman whose complicated grief over her mother’s death reflects this failure.
Amy: During this past week I began reading a wonderful, important book by Atul Gawande called Being Mortal: Medicine and What Matters in the End. Gawande, a surgeon, powerfully describes how modern living and the medicalization of death has estranged us from the dying process. He writes unsparingly about the role physicians and the medical profession play in helping us deny acknowledgement of the dying process. And, critically, he notes how this avoidance leads to more suffering in the end, physically and emotionally, both for patients and their families.
Reading Being Mortal reminded me of a case I had a few years ago of a young, deeply grief-stricken young woman. She is still vividly etched in my memory. I think her story partly reflects what Gawande talks about in his book.
The Case: Jena, a 30-year old Serbian woman was referred to me by her family physician following the recent death of her mother. When I met Jena, the dominant impression she created was one of overwhelming, unmitigated grief. Her mother had died two months prior, three years after being diagnosed with metastatic breast cancer.
The story Jena told provided an excellent window into seeing how well-meaning people–medical professionals– can turn the dying process into a horrible event, resulting in prolonged suffering for family members. At our first session, I got a sense of Jena’s personal story, which revealed her to be a young powerhouse who met with a lot of early professional success. The oldest daughter in a prominent Serbian family, Jena completed business school in the U.S. and went on to win awards and recognition for her financial acumen. She was obviously a source of tremendous pride for her parents, especially her mother who was a pioneer among female entrepreneurs in her country. Jena now worked for a high-profile brokerage house on Wall Street.
After the mother’s diagnosis, her parents lived part-time in North Carolina where her mother received a variety of experimental treatments at Duke University, a renowned medical center. They sought the best possible medical treatment available, and Jena and her sister continued their active involvement with the variety of medical regimens. “Hope” defined their journey through the maze of endless specialists they encountered. Never once, not when the cancer had metastasized to several organs, not when previous treatments failed, did any professional address the issue of death or dying. Only 10 days before her mother died, and “treatment” stopped, did the various professionals stop talking about a cure.
Jena, meanwhile, had developed considerable expertise–or rather, pseudo-expertise– in the field of cancer treatment. In our session, she recounted studies, various drug protocols, and research findings, all while tears were streaming down her cheeks. Her mothers illness and death were predominately medical events, with the implication that the disease could be controlled. This idea of “control” haunted her. She ruminated over what she might have missed in her mother’s treatment, what drugs might have been given, treatments not taken. Since all her knowledge was based on her encounters with medical professionals–as well as her own “research” –she had no context for the application of her knowledge. All she knew was that her mother was dead, and this was a failure. Mostly, she agonized, her own failure.
And her encounters with home hospice did nothing to normalize her mother’s dying process. From what she described, Jena was often responsible for titrating her mother’s dosage of morphine. Apparently her mother experienced periodic, severe pain during the last 48 hours, and Jena received instructions by phone from the hospice nurse and how to increase the dosage to mitigate mother’s pain. Again, Jena felt that her hands were on the control panel, and she failed. She could’t alleviate her mother’s pain.
I, of course, asked Jena about any conversations she had with her mother , father, sister, about death and dying. Jena was convinced her mother did not want to talk about dying–she apparently wanted to remain “optimistic” for her children–and this code of silence seemed to permeate the family ethos. Jena also firmly believed that her mother did not know she was dying, and did not accept her own death.
Certainly, listening to Jena’s narrative, factors played into this “bad death” that related to the personal dynamics of the family. Jena, the over-achiever, protective of her immigrant parents, not wanting to let them down. Protective mother, not wanting to “hurt” her children. But there is more to this story. The collaboration of medical group-think around denial of death served to stimulate the illusion of “control” and ultimate “defeat” related to her mother’s death. Medical professionals, often with the best of intentions, participated in perpetuating the “war” metaphor, i.e. the “battle with cancer”, where there is a winner and a loser. Is this really the way we want to approach issues of disease, and life and death?
My discussions with Jena about the mysteries of disease and the limitations of medical intervention fell on deaf ears. After three years of manipulating medicines, with drug experiments, with the promise of recovery, no amount of “this is in God’s hands” would do. And Jena, an Orthodox Christian, did indeed believe in God, but in the last three years, God couldn’t compete with the illusory prowess of the Duke medical specialists.
I saw Jena for three visits, and, no matter what I said, she clung to the idea that she let her mother down, and her grief remained unabated. I hoped to have her father, sister and/or financee come in with her when they came to town. Then she called before the last session, saying that she was going to North Carolina to spend several weeks with her fiancee. That was the last time I met with her. I called once, she did not return my call. My heart went out to this young woman who, despite her conviction to the contrary, did not let her mother down.