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MARIAN
GRANT believes her fellow baby boomers, all those
millions of 40- and 50-somethings preoccupied with
staying young, are ready to adopt a new mission. Join
the movement to change the way Americans die, she urges.
Let’s make “dying well” a national priority.
Is that
asking a lot of a generation that’s in major denial
about aging?
Grant, a
50-year-old nurse practitioner, suggests that boomer
power has already transformed the culture of healthcare.
Look, she says, at what’s happened to childbirth.
“When I
was born in 1956, it was a highly medicalized
procedure,” she says. “My mother was not conscious for
any of her three deliveries. My father was not in the
room. My mother wanted to breastfeed, and that was an
enormous hassle. In those days, you surrendered yourself
to the medical system, whether or not that was an
experience you wanted.
“Then,
over the years, individuals said, ‘Hang on, I want my
partner there. I want drugs—or I don’t want drugs. I
want it to be natural, or very medical. I want it to be
at home.’”
She says
patients should be able to discuss end-of-life options
the same way.
“Do you
want it to be a very medical experience? If you really
want to die at home, what would it take to make that
happen? Have you talked to your loved ones about your
wishes?”
Grant is
convinced that a boomer-driven movement can reclaim
death from high-tech machines in intensive care units.
As middle-aged Americans confront the tough clinical
realities of dying through their own parents’
experiences, they will insist that the final stage of
life becomes as personal and family-based as the first,
she says.
“We’re
the choice generation, right? We’re the ones who have 40
different types of mustard we can pick from. There are
not a whole lot of choices in the hospital at the moment
for people who are dying. You have to know enough to be
able to say ‘I need to see someone about pain
management. My mother isn’t comfortable and what are you
going to do about that?’”
Grant
coordinates palliative care as part of the geriatrics
department at Johns Hopkins Bayview Medical Center. Her
team includes a social worker, a physician and a
chaplain. Their goal is to make sure that patients’ last
days are as meaningful and pain-free as possible—and
that their loved ones are equally well served.
Palliative care helps reduce the physical, emotional and
spiritual suffering that can accompany serious illnesses
such as heart disease, dementia or cancer. Like hospice
care, palliative care seeks to lessen the severity of
symptoms rather than offer a cure. While hospice is
usually designed for the last six months of someone’s
life, palliative services offer comfort care to people
earlier in their illnesses. No particular therapy is
excluded.
Last
year, roughly one-third of all deaths in the United
States were under the care of a hospice program,
according to the National Hospice and Palliative Care
Organization. And although hospital-based palliative
care programs are increasing, there aren’t nearly enough
to serve the dying population’s needs, says Ira Byock,
55-year-old chairman of palliative medicine at Dartmouth
Medical School and author of Dying Well: The Prospect
for Growth at the End of Life.
“We have
a true public health crisis surrounding the way we care
for people at the end of life,” he says. “Although most
people would prefer to die at home, only 20 percent do.
About 60 percent die in hospitals, about 20 percent in
nursing homes....If we don’t make major changes in the
way we plan for the last chapter of life, the baby boom
generation is going to stress our health systems in ways
they have never been challenged before.
“Our
culture, and therefore our systems, are focused on
avoiding anything to do with incurable illness,
including frail aging, dying and care-giving. And
because we’re all so focused on avoiding them, when they
happen, they happen badly.”
‘A
personal approach’
MUCH of
Marian Grant’s job is educating folks on what lies
ahead. As a former marketing executive, she knows how to
tailor her pitches to a variety of audiences. When the
palliative care team started working at Bayview, for
instance, she realized the hospital staff could also use
her guidance. Too many physicians considered her offer
of palliative help an invitation to “give up” on
patients.
“When we
showed up, it was ‘Oh, we’re not ready for palliative
care. We still think we could save this patient,’” Grant
recalls. “So I’d ask, ‘Do you think he’ll go home?’
‘”Oh,
he’s never going to leave the hospital,” they’d say. “So
when are you waiting to call us? Two days before he
dies? Wouldn’t it be nice to call us two weeks before?
Maybe we’d get to know the family and could help them
make difficult decisions.” The palliative care team soon
had all the referrals it could handle.
Mary
Estes, 59, says the service “buoyed the family” during
the final illness of her father, Bob Estes.
“They
helped us come together to understand that this was not
a situation he was going to recover from,” she says. “It
was professionalism with a heart, a more personal
approach to medicine. It reminded me of when I was
growing up in Dundalk and the family doctor would come
to our house.”
During
Benjamin Trotta’s final illness, family and friends
phoned his son John for updates. Not only did Grant
write detailed e-mails about his father’s condition for
him to take to family meetings, she also suggested
questions he should ask.
“Miss
Grant would say ‘Didn’t you want to know about this or
that?’ And then it was apparent to me that ‘Yeah, I
really did’,” John Trotta, a 51-year-old Baltimore
County resident, says. “It was like we had some kind of
inside seat about what was going on.”
While
Grant talks about the potential of change, the nurse
practitioner also serves as an example of it. A
communications major in college, Grant spent her first
20 working years in marketing with Procter & Gamble.
After the company bought Noxell in 1989, she moved to
Baltimore, ultimately leading a global team that helped
establish two new products, Cover Girl Outlast and Max
Factor Lipfinity.
Eventually she became weary of the corporate world. Her
volunteer work at an AIDS group home and hospice in
Baltimore
began to claim more of her attention. After she and her
husband, writer Dale Keiger, finished a 250-mile bike
ride to raise money for AIDS, Grant finally pulled a
typical boomer move: She left a highly profitable career
to find work that was more spiritually rewarding.
Her
search led to nursing. In 2000, Grant received her
nursing degree from the John Hopkins University. Five
years later, working and attending school part time, she
earned her master’s degree and became licensed as an
acute-care nurse practitioner.
“I love
the complexity of working with really sick patients. But
I kept getting frustrated with how patients would die so
badly in the ICU,” she says. “Families would be
unprepared and patients would be unprepared. We would
chew up their last remaining days, doing stuff to them
when it turned out we couldn’t save them anyway. And
they’d be too sick to go home.”
Want a
choice
CAN
boomers keep their parents from spending their last days
with beeping machines and teams of strangers? Can they
encourage intimate family discussions about end-of-life
issues? Can they improve the process of life’s final
moments—creating a better system of care for themselves?
“The
generation who’s dying now is the ‘World War II,
Depression Era, Follow-the-Line, Do-What-You’re-Told,
Be-Grateful-for-What-You-Get’ people,” Grant says.
“We’re the people who are like ‘Unh-unh. I want to do it
my way, in a manner that fits my values. I want more
information—and I want you to give me answers.”
Grant
tells of a patient who, after consulting with her,
decided he wanted to stop the dialysis that was treating
his kidney failure and turn off the heart defibrillator
so that he could go home.
On his
last day in the ICU, the patient was surrounded by
family members who flew in from around the country when
they learned of his decision. He told tales they had
never heard about World War II and enjoyed a hamburger
his medical regimen had denied him. When he died at home
three days later, his daughter called to tell Grant that
he had gone peacefully, surrounded by those he loved.
“I feel
really great after a call like that,” she says. “This
man was going to die anyway. But rather than dying in
the middle of the night in the ICU with strangers there,
he had the chance to say ‘Goodbye’ and to be in a
comfortable place. He had some time to put his emotional
affairs, and any other business, in order.”
To
Marian Grant, that doesn’t look like such a bad way to
go. |
