Homer’s book clubs often lead to intense discussion among small groups, but it’s not often that a book leads to a wider town conversation. This fall on Sept. 18 the Friends of the Homer Public Library held what could be called a mega book club: a standing-room only talk at the library on Atul Gawande’s “Being Mortal: Medicine and What Happens at the End.”
Cosponsored by Hospice of Homer, the month before hospice and the library lent out copies of Gawande’s book. People came not only to hear a panel of experts discuss the book — about half had read it themselves.
That event has stimulated a wider community conversation of how we can be more supportive of aging and the end of life. At 6 p.m. Tuesday, hospice holds the third in a series of discussions about “Being Mortal” that expands on September’s talk.
“It is a discussion, but also to see if there’s anything we can do to facilitate, if there’s anything we can do to make our community more open for people who are aging or in the process of dying.” said Darlene Hilderbrand, executive director of Hospice of Homer.
Gawande, the author of three previous books based on his experience as a surgeon at Brigham and Women’s Hospital, Boston, ventures into undiscovered country for doctors. How can doctors shift from treating sickness to helping patients and families deal with death?
“We have come to medicalize aging, frailty and death, treating them as if they were just one more clinical problem to overcome,” the late Oliver Sacks wrote about ‘Being Mortal.’ “However, it is not only medicine that is needed in one’s declining years, but life — a life with meaning, a life as rich and full as possible under the circumstances.”
Three panelists with backgrounds in aging and dying spoke on Sept. 18: Kathy Carssow, the adult emergency coordinator for the Center; Brad Hughes, an artist and longtime hospice volunteer; Dr. Rob Downey, medical director for South Peninsula Hospital’s Long Term Care home, and Nancy Lander, a retired social worker.
Carssow called “Being Mortal” a call for change. Gawande advocates a shift in the philosophy of health care less about ensuring health and survival and more about continuing well being. The book tackles a basic question: What makes life worth living?
“Our ultimate goal is not a good end but a good life to the very end,” she said.
Downey told an anecdote about his first hospice patient, a 55-year-old man. Close to dying, the man wanted to see Downey — but not for medical care. He wanted to give him a gift of a birdhouse. He found the man and his family were peaceful.
“Everybody was surrounding him and loving him after being dealt a difficult blow,” Downey said. “That kind of embodies what hospice does. … This isn’t about struggling. The die is cast — he has to deal with the intensity of death.”
At the same time, dying people lose vitality, independence and capacity, and what can emerge is “the beloved American ability to John Wayne our way through things,” Downey said. “We are forged to fight death. That’s what happens in medical school.”
Hughes said he would offer a different perspective to Carssow and Downey.
“They get to speak science and truth. I get to say whatever I want,” he said.
When he was a boy, Hughes said he questioned why he should have to go to school and learn when all that would happen was he would die. His mother told him not to ask questions like that. At 20, Hughes said he woke up in a rowboat, “if you use that metaphor that life is a river,” he said.
“I realized I was in something I didn’t have control of. You’re going down the river and the river can be really nice, or it can get rapids and rocks and narrow canyons and all sorts of scary things can be happening,” he said. “At the end is a set of waterfalls you’re going to go over.”
Added to that, Hughes said he realized people are loaded with emotions they can’t understand, “frightening, like cave man reptilian stuff.”
Hughes said he got a new perspective when he happened to see “Bradshaw: On Family,” by John Bradshaw, on TV.
“It was like the whole program was just for me. I got to understand from him the emotional system is like a digestive system. It digests experience and produces wisdom,”
That’s what’s needed in end-of-life care, he said.
“It’s not enough to take care of someone’s physical needs. People are suffering because they’re lonely, sad, helpless and vulnerable,” Hughes said. “Until our society comes to the point with our emotional life, we’re not going to do anything right.”
Lander said in talking about aging and dying, the first person people have to talk with is themselves, see how they feel.
“If you know how you feel, you’re going to be much more able about how you will talk with your loved ones,” she said.
“Being Mortal” inspired her, Lander said.
“The advocate in me was totally awakened,” she said. “I see this book as a total call for action.”
In questions and comments from readers that night, the discussion led to what individuals and the community can do.
Elise Boyer is an Alaska Court System mediator who helps provide services for families trying to figure out what to do with aging parents.
“This book made me shake with energy,” she said. “One of the things I see is fear. Everyone is afraid to see that person go. We’re all going to be in those rooms. You’re going to have those conversations at some point.”
“The discussion is most powerful when it plays out earlier. The most poignant situations are the ninth-inning discussion,” he said.
Having that discussion helped him deal with his aging parents, said Mark Robinson, a retired music teacher.
“It didn’t make the passing easier, but it made the process so much easier for us,” he said.
People should not only think about having those discussions with their parents, but with their children, Robinson said.
Downey said he had two messages for the discussion of “Being Mortal.”
“My first is, this is a tremendous privilege. I want to acknowledge that Dr. Gawande’s book is really remarkable. I think it’s his humility that sets him apart,” Downey said.
The second message is that all the people involved in dying — the patient, the family, the physician and society — all lose function.
“Any community needs a whole host of players that are looking out for individuals and families as they make their transition from life,” Downey said. “I was utterly moved by the book and reminded of the need to be an advocate and a participant, and these amazing things that can happen when the patient and everyone else feels a sense of enrichment and peace — and just relief.”
“Being Mortal: Medicine and What Matters in the End,” by Atul Gawande, Metropolitan Books, hardcover, $26.
Available to borrow at Hospice of Homer and the Homer Public Library or on sale at the Homer Bookstore.
A continued discussion of “Being Mortal,” 6-7:30 p.m. Tuesday, Dec. 1, at Hospice of Homer, 265 Pioneer Ave., Suite 3. Bring ideas and passion to the conversation on what we can do to make the lower Kenai Peninsula more supportive of aging and the end of life. For more information, call hospice at 235-6899.
Lina LePage speaks at 1 p.m. Dec. 4 for the Parkinson’s Support Group meeting at the Homer Senior Center. LePage works for social services at South Peninsula Hospital and will talk about end-of-life choices and decisions.
“Grief in the Holidays,” 5:15-6:45 p.m. Dec. 8, Hospice of Homer. A discussion and support group for people coping with grief and loss over the holidays.
Hospice of Homer membership drive. Through December.