In March 2009, my close friend and former Observer reporter, Kathleen McClain, entered hospice care after years of treatment for congestive heart failure. Doctors said there was nothing more they could do. So she stopped taking some heavy-duty heart medicines and prepared to die.
Then, something unexpected happened. With loving care in the peaceful surroundings at Levine & Dickson Hospice House in Huntersville, she not only didn’t die, she began to feel better. She celebrated her 57th birthday that September and ordered new fall clothes from Land’s End.
After 10 months – the longest time any patient had lived there – she was discharged. And she lived for 3 1/2 more years – a special gift of time for her, her family and her friends.
Through that experience, I learned what Dr. Atul Gawande describes in his latest book, “Being Mortal: Medicine and What Matters in the End.” Having once thought that hospice “hastens death,” Gawande discovered it can actually extend life and help improve what remains.
Gawande, a Boston surgeon and author of four New York Times’ best-selling books, will talk about his book in Charlotte Feb. 24 as part of the Learning Society of Queens lecture series. The event is sold out.
What the story ended up being about is, not what a ‘good death’ is, but what it means to lead a good life when you’re mortal, all the way to the very end.
Dr. Atul Gawande
In a telephone interview last week, Gawande said he visits Charlotte periodically because his wife of 24 years, Kathleen Hobson, has relatives in the area. Her uncle and aunt, Downie and Sally Saussy, live in Charlotte, and her parents, Jim and Nan Hobson, live in Asheville.
Gawande said he became interested in writing about end-of-life decisions as a way of making sense of “things that confuse me.” It came at a time when his own father, a surgeon in southern Ohio, had been diagnosed with a tumor in his brain stem and spinal cord. Gawande said he struggled with how to be a good son as well as a good doctor when facing terminal illness.
“Here I was a surgeon, in practice for more than a decade, and I still didn’t know what it meant to be competent at taking care of people’s problems I was not going to be able to fix,” he said. “…What the story ended up being about is, not what a ‘good death’ is, but what it means to lead a good life when you’re mortal, all the way to the very end.”
“Being Mortal” covers a lot of ground. The first half addresses where people live when they become too frail to remain in their own homes.
The second half addresses the discussions that ought to be made about the end of life and how doctors – and families – are reluctant to face them.
Gawande said he interviewed more than 200 patients and families and scores of professionals, such as geriatricians, palliative care physicians, hospice nurses and nursing home aides. He found their goals were different from those he shared with most doctors.
“I presumed that my No. 1 goal was to make people healthy,” he said. “…Why wouldn’t it be? But then we’re lost when health is not really possible anymore. What I came to understand (was that) well-being is larger than just survival. … Larger than that is asking ‘What are the reasons you want to be alive? What are the things you would not sacrifice in the course of trying to have more time? … That is the conversation I began to have with patients.”
In the United States, 25 percent of all Medicare spending is for 5 percent of patients in their final years of life. Most of that money goes for care in the last couple months and is of little apparent benefit.
In the book, he describes a colleague who was helping her father prepare for surgery to remove a spinal cord tumor. The surgeon had said the operation could leave him a quadriplegic. As the daughter drove home the night before the operation, she realized she hadn’t actually asked her father what he wanted. She turned around and went back.
She asked the question – “How much (are you) willing to go through to have a shot at being alive, and what level of being alive is tolerable for you?” And she was surprised by his answer: “Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.”
Complications arose after surgery, and he would become severely disabled. His daughter had to decide whether to allow a second operation. When doctors assured her that her father would be able to eat ice cream and watch football, she was able to say yes without feeling guilty. “He had already made the decision.”
From his visits with hospice and palliative care experts, Gawande said he learned how to start difficult conversations about the end of life. He asks questions such as “What are your fears?” and “What are your goals if time is short?”
When delivering bad news, he often starts with the words, “I am worried.” It conveys that the situation is serious but also that he is on the patient’s side. Family members can use the same words and ask the same questions.
Many people have told Gawande that they’ve used the stories in his book as a way to start difficult discussions about the end of life. Adult children or aging parents can refer to the people in the book and ask each other what they would have done.
“It’s just very powerful to ask, ‘What’s your understanding about where you are with your health,’ ” he said.
Gawande said he had that conversation with his father before he died in 2011 at 76, and he’s having it now with his mother, who’s 79 and living alone in rural Ohio. Her biggest fear is losing her freedom, and the nursing homes where some of her friends now live make her depressed, he said. So he’s shown her some of the places he wrote about, where she could get help without losing her freedom.
Knowing how to ask the questions, Gawande said, has led to “some of the most meaningful discussions I’ve had in my life.”