Coming to Terms with LossFebruary 11th, 2010 at 11:54 am by Anne Schieber under News
There is a time after major loss when you question everything. There’s the shock and grief of course, and the obvious question, why. But for me, it’s been more the “what.” What if you did this, or that, would the outcome have been different?
I poured through medical records. I ordered an autopsy. I wanted to know what we missed, what turned my husband’s case from a set of seemingly manageable complications into a terminal lost cause. I was not use to seeing doctors dumbfounded. When they told me after he went into respiratory distress that would not survive without a ventilator, I didn’t believe them. If his lungs were so bad, why didn’t anyone mention a lung transplant, for example. After all the rescue attempts, why did the road stop here?
It was in my search for answers that I came across the work of Dr. Sherwin Nuland. “Shep” Nuland, as he is known, is a surgeon and professor at Yale. He has written a series of books on the practice of medicine and asks a deep questions of his profession. Namely, have doctors, in their intellectual pursuit, lost the “art” of their practice, the one that began with Hippocrates and the great Greeks which considers first, the humanity of patients, and not just their survival outcomes.
My husband lived four and a half years after his cancer diagnosis but much of that time had been spent in pain and the pursuit of tackling one complication after another. The stem cell transplant cured his cancer but replaced it with something just as grave, an illness called “Graft vs. Host Disease.” It eventually destroyed his lungs.
Dr. Nuland’s book, “How We Die,” was one of the first things that helped me make sense of what happened and to answer that pervasive question, “what.”
What would have happened had we let nature take its course and not pursued such aggressive treatment? Would my husband have had a better life in the end, shorter perhaps, but better?
Dr. Nuland talks about how he, too was wrapped up in the pursuit of “survival” when his own brother was diagnosed with cancer. He shares stories of similar terminal patients and discusses with remarkable cander, the anxiety doctors have about process of death. If you ever spent any amount of time in an ICU ward with a loved one, his discussion hits home.
I went to hear Dr. Nuland when he spoke at Fountain Street Church Tuesday night and had the pleasure of speaking with him after his talk (for once, snow pays off – on my way home, I ended up dropping him off at his hotel to spare someone else the drive). He encouraged me to write about my husband’s case because he said it might be the only way I can make sense of what happened. He mentioned something Valclav Havel once said. “The best outcome is not necessarily what you want. It is the one that makes the best sense,” he told me.
Dr. Nuland is releasing an updated edition of “How We Die” in April. It’s been 14 years since the original publication and while that seems like a short time, he says a lot in medicine has changed to warrant a new discussion. I look forward to reading it and his new book, “The Mysteries Within: A Surgeon Explores Myth, Medicine and the Human Body.” Based on the turnout at Fountain Street Church that night, I imagine there will be many lined up to read it. In the meantime, I invite you to share your stories about medical care in the final stages of life. I imagine, as the population ages, that more and more of us will be walking in the same shoes.