In the last part of his book Being Mortal, Atul Gawande addresses the events following his father’s being diagnosed with a rare caner, astrocytoma of the spinal cord. Questions of surgery now or later, chemotherapy and/or radiation therapy, assisted living or hospice created emotions that swirled through the family like a tornado.
Having cared for many patients like his father, I can verify the authenticity of Gawande’s descriptions of the painful, poignant, and difficult discussions patients and families have when confronted by terminal cancer. One surgeon in Boston recommended immediate surgery on Gawande’s father; Dr. Benzel in Cleveland advised waiting. Who was right? How was one to decide?
Gawande bemoans the tendency of doctors simply to provide medical information without knowing who the patient is and what the patient actually wants. His family chose to wait in part because Dr. Benzel sat down and took the time to discuss with the father and the family all the implications of their decisions
For two and a half years the tumor grew so slowly that Gawande’s father continued to practice urology. Then, his symptoms worsened. Gawande describes how the relentless growth of cancer forced his father into more and more dependency and eventually into hospice.
Along the way were difficult discussions about when he would die, whether he should take chemotherapy that had a minimal impact on his cancer, and what should be done if and when he decided against any medical interventions. Through this journey, Gawande discovered doctors, nurses, and other health care practitioners who were thoughtful and sensitive as well as plenty who were locked into an ancient hierarchical system of “all-out treatment.”
He argues that in medicine we need doctors who “deal with patients as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the discussions and say what they have seen, who will help people prepare for what is to come.”
As an oncologist, I had many of these “breakpoint discussions” as Gawande names them. They are never easy; they take time, but it is a necessary part of caring for the patient. I am sure I did not get it right every time.
Gawande interviewed Susan Block, a palliative care specialist, about these difficult decisions and learned of resources to help us talk with patients about end of life issues. As he pointed out with regard to his father’s cancer, there is often more ambiguity than certainty in the care of what he refers to as the “unfixable.” He argues we need more doctors who will not only give the facts but also interpret them so the patient can decide what is best at the end of life.
Especially important and hard to explain is informing patients that by stopping treatment and entering hospice, they may actually feel better and live longer.
He notes, “The lesson seems almost Zen: you live longer only when you stop trying to live longer.”
In the epilogue, Gawande writes, “Being Mortal is about the struggle to cope with the constraints of our biology.” He argues that medicine has been focused on health and survival, but should be focused on our well-being. This is the reason one wishes to be alive at the end of life or when debility comes, and all through our lives.
When I read this book three years ago, I bought a copy for all of my children and during our summer vacation scheduled an hour to discuss its implications for my wife and me as we approach eighty. It was one of the most meaningful family discussions we have ever had. I encourage you to read this challenging and insightful book not only for your benefit but also for the well-being of all you love.