During volunteer training sessions, Dr. Gregory Gramelspacher reads a poem by Jack Gilbert in which he wishes he had "crawled in among the machinery" at his wife's hospital bed to hold her so that she "would dimly recognize it was me carrying her to where she was going."
Such poetic imagery resonates with those who have done the sacred work of sitting with a dying person, said Gramelspacher, director of a newly adopted program at Wishard Hospital called No One Dies Alone. When enough volunteers are trained — perhaps as soon as this month — people who die at Wishard will not die alone, even when nurses are busy and family members are miles away.
Sometimes trauma strikes people who are traveling alone; other times family members can't do it all: They can't work, eat, sleep, and manage their families while keeping a bedside vigil at the hospital. In either case, the No One Dies Alone program offers relief for dying people as well as the families, friends, doctors, and nurses who care for them.
The relief of suffering is a basic goal of every doctor, yet it often competes with the need for painful medical treatment. At the end of life, though, relief from suffering should be paramount, Gramelspacher suggests. To hold a hand, offer ice chips, or tuck in a blanket is to bring a "loving presence," he said, and those small gestures can be profoundly meaningful at the end of life.
No One Dies Alone (NODA) was the brainchild of a nurse in Eugene, Ore., who planned to sit with a patient so he wouldn't die alone. But Sandra Clarke got busy, and her patient did die alone. Afterward, Clarke created NODA, and the program has spread from Eugene throughout the world.
Adam Campagna signed up for Wishard's two-hour NODA training because "some force was saying, 'Get down there and learn about it. If it's not for you, it's not for you.' " He appreciates the requirement that volunteers show religious neutrality, and he hopes to offer comfort when called upon to sit vigil at a bedside or help with volunteer scheduling.
Day-to-day NODA operations are handled by Dr. Thomas Whitehead, Wishard's Palliative Care program manager, who said 120 people completed two-hour training sessions late last year. However, in addition to NODA training, volunteers must also complete a hospital services volunteer orientation, which includes a tuberculosis vaccine, a criminal-history check, and some e-learning. "When they come out on the far end, they're ready to commit," Whitehead said. "If I get 10 more volunteers, and their availability matches up, I can launch almost immediately."
Up to 24 volunteers per vigil might be needed to work in three-hour shifts, either sitting solo or paired with another volunteer, Whitehead suggested. Between vigils, volunteers will stay engaged via monthly meetings at which they can discuss their experiences and learn more about palliative care — which focuses on relieving and preventing the suffering of patients.Many volunteers come to NODA because they were with loved ones at the time of death. "I was in the room when my best friend died of cancer," Whitehead said. "I was very humbled by the experience."
During training sessions, palliative care staff members take turns offering end-of-life information, and Gramelspacher often reads "By Small and Small: Midnight to 4 A.M." the poem written by Gilbert. Mary Smith-Healy might discuss what volunteers can expect at the end stage of life from a nurse's perspective, and Karen Estle might share her insights as the program's chaplain. For his part, Whitehead urges volunteers to "be honest, be yourself. Provide comfort. Hold a hand. Wipe a brow. Don't put yourself in the position to think, 'I wish I would have É' "
Parkview Health in Fort Wayne launched its No One Dies Alone program three years ago, and it's been "an incredibly popular volunteer program," said Eric Clabaugh, public information manager. The community is so aware of NODA, Clabaugh said, that the local media recently publicized the fact that a hospital staff member volunteered to sit vigil with a dying patient for an hour when no one else was available.
Volunteers are drawn to NODA because they believe that the end of life can be "less of a traumatic experience and more of a human experience," Gramelspacher said. "The analogy is often of a midwife to the dying — being a compassionate companion during a profoundly important and meaningful time."
NODA training sessions are 5:15-7:15 p.m. on the third Tuesday of each month, including Jan. 15, in Wishard's auditorium. Call 317-630-6118 for more information.
Palliative care: A gentler exit
Dr. Gregory Gramelspacher's focus as director of the oldest palliative care program in Indiana is to invert the ratios that currently rule end-of-life care in the United States: "Eighty percent of Americans say they want to be home at the time of death, surrounded by friends and family. But 80 percent instead die in a hospital."
Palliative care programs focus on providing patients with relief from the symptoms, pain and stress of a serious illness. The No One Dies Alone program is part of Gramelspacher's larger message about end-of-life care. If doctors were truly doing their jobs, he said, fewer people would die in hospitals; instead they would discuss their own last days well in advance. Their doctors would offer plans for end-of-life care right at home. A patient would see his imminent death as "an essentially human experience, not as a medical problem to be managed by doctors and nurses in a hospital," Gramelspacher said.
Too many Hoosiers who might have wanted a gentle exit at home instead wind up in intensive-care units because their doctors did not discuss end-of-life road maps, he suggests. Often Gramelspacher thinks to himself: "If anyone had been practicing medicine, he would have prevented this person from ever getting into the ICU." Doctors must step up, provide end-of-life road maps, and honor their vow to relieve suffering, Gramelspacher said.
"Our focus is to return death and dying to the community," he said, "to let more people die at home surrounded by family and friends." Other countries, including Canada, the United Kingdom, Australia, and New Zealand, are way ahead in this effort. In those nations, 70 percent of hospitals with 300 or more beds have palliative care units. "We're playing catch-up in this country," Gramelspacher said, and he credits Wishard's "enlightened leadership" with blazing the palliative trail in Indiana. The IU Simon Cancer Center on the IUPUI campus doesn't yet have a palliative care program.
"Sometimes I feel like I'm sticking my finger in a dike that's about to burst," Gramelspacher said, because families are clamoring for palliative care, but hospitals have been slow to provide it. "There are some aspects to the end of life that need expert attention by skilled health care providers, but primarily death and dying is a human experience, not a medical program to be solved with medicines or technology."
"We spend more on sickness care — we can't call it health care — than the rest of the world combined," Gramelspacher said, and he should know. He was team leader in Africa 15 years ago with the IU-Kenya medical program before starting Wishard's palliative care effort. He said that $9,000 for each of the 330 million U.S. citizens — or $2.9 trillion — is spent every year on care for people who die in American hospitals, but $500 million less — $2.4 trillion — is spent annually on end-of-life care elsewhere on the planet which Americans share with another 6.5 billion people. Those excessive U.S. dollars often buy lonely and painful hospital deaths, the opposite of what palliative care can offer.
Gramelspacher invokes Dame Cicely Saunders, the founder of the hospice movement in the United Kingdom, who said, "You matter to the last moment of your life." Palliative care is "not so much about death and dying as about life and living," Gramelspacher said. "It's not all doom and gloom. It's pushing the present moment."
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