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
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
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
Parkview Health in Fort Wayne
Health in Fort Waynelaunched 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.
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