January 15, 2003
Life's end doesn't need to be dark, speaker says
By GINNY MERRIAM of the Missoulian
In modern times, we've swept death into hospital and nursing home rooms and tried not to think about it. But true "dying" begins with the diagnosis of an incurable disease, months before, and can be a rich time of growth and closure, Missoula end-of-life specialist and physician Ira Byock told a Missoula audience Tuesday evening. "In fact, dying is a part of living," Byock told a standing-room-only crowd of about 100 people at Community Medical Center. "You're not dead until you're dead."
The door is open to opportunity at the end of life, he said. Chances abound for resolution, for exploring the meaning and purpose of life, for exploration of spirituality and communication with loved ones.
Relationships can come full circle and be completed by the simple chances to say, "Please forgive me," "I forgive you," "Thank you" and "I love you," Byock said.
"And then you can say goodbye," he said.
Those things happen, and they happen best, when people get the care they want. Everybody wants "the best care possible." And they want to know how they can get it.
"That's what people ask me, all the time, everywhere I go," said Byock, who travels as a speaker and advocate for quality care at the end of life and is a founder of the Missoula Demonstration Project, now called Life's End Institute. "That's what they want for themselves and their loved ones."
The exact features of care are different for everybody, Byock said. But people agree on many points. Studies show that the majority want pain and symptom management, clear decision making, preparation for death and affirmation as a whole person. Even though an illness has ravaged them physically, they want to feel valued to the end.
People want doctors to talk to them plainly and sensitively, and they want that to work two ways. "People want to feel listened to," Byock said.
A University of Washington survey found that while people want skills in medicine in their doctors, they also want emotional support, communication, advocacy and inclusion of their families, Byock said. Physician training is at the dawn of teaching and developing the non-scientific skills of doctors. "The list is simple," he said. "The care is hard."
As a nation, we can do better, Byock said. Even when hospice care is available to people, it's relegated to the very last days instead of being integrated into the last months. The average length of stay in hospice care is 30 days, and the median is 14. The Medicare hospice benefit is 180 days, written with the notion that six months is a beneficial length of time.
In November, the Last Acts national coalition of more than 1,000 groups released the first state-by-state study of how people die in the United States. It found that while 70 percent of people say they want to die at home, free of pain and surrounded by family and friends, 75 percent of us die in medical settings. Prolonged, persistent pain in nursing home patients was found at high levels. "Even after a decade or more of serious work," Byock said, "this report presents a dismal picture of how people are cared for and how we are dying."
However, Missoula is blossoming as the "demonstration site" of better and good care at life's end, Byock said. The Life's End Institute has brought many coalitions around the city. Now, at both hospitals and in medical sites around town, the same standard rating scale is used for pain. The Life Stories Task Force, begun to document stories of people's lives, became so successful it spun off as its own entity, Storykeepers. Missoula now has Stories and Stones, an annual story-oriented cemetery tour. The Caring Circles program brings people together to help with care of the frail or dying.
"We're reintegrating the fact of death into our lives," Byock said.
This week, a coalition of groups led by the Life's End Institute is holding events to celebrate Missoula's Choices Bank, an electronic repository of citizens' wishes for health care. Missoula is the first city in the country to have one form for every person and health care institution. It can be downloaded at www.choicesbank.org.
"Community is a verb," Byock said. "We practice what we preach here in Missoula, Montana."
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