"For the Elderly, Being
Heard About Life’s End", (c) Jane Gross, The NY Times, May 5, 2008
Edie Gieg, 85, strides ahead of people half her age and plays a
fast-paced game of tennis. But when it comes to health care, she is a
champion of “slow medicine,” an approach that encourages less aggressive —
and less costly — care at the end of life.
Grounded in research at the Dartmouth Medical School, slow medicine
encourages physicians to put on the brakes when considering care that may
have high risks and limited rewards for the elderly, and it educates
patients and families how to push back against emergency room trips and
hospitalizations designed for those with treatable illnesses, not the
inevitable erosion of advanced age.
Slow medicine, which shares with
hospice care the goal of comfort rather than cure, is increasingly
available in
nursing homes, but for those living at home or in assisted living, a
medical scare usually prompts a call to 911, with little opportunity to
choose otherwise.
At the end of her husband’s life, Ms. Gieg was spared these extreme
options because she lives in Kendal at Hanover, a retirement community
affiliated with Dartmouth Medical School that has become a laboratory for
the slow medicine movement. At Kendal, it is possible — even routine — for
residents to say “No” to hospitalization, tests, surgery, medication or
nutrition.
Charley Gieg, 86 at the time, was suffering from a heart problem, an
intestinal disorder and the early stages of
Alzheimer’s disease when doctors suspected he also had
throat cancer.
A specialist outlined what he was facing: biopsies,
anesthesia, surgery, radiation or
chemotherapy. Ms. Gieg doubted he had the resilience to bounce back.
She worried, instead, that such treatments would accelerate his downward
trajectory, ushering in a prolonged period of decline and dependence. This
is what the Giegs said they feared even more than dying, what some call
“death by intensive care.”
Such fears are rarely shared among old people, health care
professionals or family members, because etiquette discourages it. But at
Kendal — which offers a continuum of care, from independent living
apartments to a nursing home — death and dying is central to the
conversation from Day 1.
So it was natural for Ms. Gieg to stay in touch with Joanne
Sandberg-Cook, a
nurse practitioner there, during her husband’s out-of-town
consultation.
“I think that it is imperative that none of this be rushed!” Ms.
Sandberg-Cook wrote in an e-mail message to Ms. Gieg. The doctor the Giegs
had chosen, the nurse explained, “tends to be a ‘do-it-now’ kind of guy.”
But the Giegs’ circumstances “demand the time to think about all the
what-ifs.”
Ms. Sandberg-Cook asked whether Mr. Gieg would want treatment if he was
found to have
cancer. If not, why go through a
biopsy, which might further weaken his voice? Or risk anesthesia,
which could accelerate her husband’s
dementia?
“Those are the very questions on my mind, too,” Ms. Gieg replied. The
Giegs took their time, opted for no further tests or treatment, and
Charley came back to the retirement community to die.
Such decisions are not made lightly, and not without debate, especially
in an aging society.
Many in their 80s and 90s — and their boomer children — want to pull
out all the stops to stay alive, and doctors get paid for doing a
procedure, not discussing whether it should be done. The costliest
patients — the elderly with chronic illnesses — are the only group with
universal health coverage under
Medicare, leading to huge federal expenditures that experts agree are
unsustainable as boomers age.
Most of that money is spent at certain academic medical centers, which
offer the most advanced tests, the newest remedies, the most renowned
specialists. According to the Dartmouth Health Atlas, which ranks
hospitals on the cost and quantity of medical care to elderly
patients,
New York University Medical Center in Manhattan, for instance, spends
$105,000 on an elderly patient with multiple chronic conditions during the
last two years of life; U.C.L.A. Medical Center spends $94,000. By
contrast, the
Mayo Clinic’s main teaching hospital in Rochester, Minn., spends $53,
432.
The chief medical officer at U.C.L.A., Dr. Tom Rosenthal, said that
aggressive treatment for the elderly at acute care hospitals can be
“inhumane,” and that once a patient and family were drawn into that
system, “it’s really hard to pull back from it.”
“The culture has a built-in bias that everything that can be done will
be done,” Dr. Rosenthal said, adding that the pace of a hospital also
discourages “real heart-to-heart discussions.”
Beginning that conversation earlier, as they do at Kendal, he said,
“sounds like fundamentally the right way to practice.”
That means explaining that elderly people are rarely saved from cardiac
arrest by CPR, or advising women with broken hips that they may never walk
again, with or without surgery, unless they can stand
physical therapy.
“It’s almost an accident when someone gets what they want,” said Dr.
Mark B. McClellan, a former administrator of Medicare and now at the
Brookings Institution. “Personal control, quality of life and the
opportunity to make good decisions is not automatic in our system. We have
to do better.”
The term slow medicine was coined by Dr. Dennis McCullough, a Dartmouth
geriatrician, Kendal’s founding medical director and author of “My Mother,
Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring
for Your Aging Loved One.”
Among the hard truths, he said, is that 9 of 10 people who live into
their 80s will wind up unable to take care of themselves, either because
of frailty or dementia. “Everyone thinks they’ll be the lucky one, but we
can’t go along with that myth,” Dr. McCullough said.
Ms. Sandberg-Cook agrees. “If you’re never again going to live
independently or face an indeterminate period in a disabled state, you may
have to reorganize your thinking,” she said. “You need to understand what
you face, what you most want to avoid and what you most want to happen.”
Kendal begins by asking newcomers whether they want to be resuscitated
or go to the hospital and under what circumstances. “They give me an
amazingly puzzled look, like ‘Why wouldn’t I?’ “ said Brenda Jordan,
Kendal’s second nurse practitioner.
She replies with CPR survival statistics: A 2002 study, published in
the journal Heart, found that fewer than 2 percent of people in their 80s
and 90s who had been resuscitated for cardiac arrest at home lived for one
month. “They about fall out of their chairs when they find out the extent
to which we’ll go to let people choose,” Ms. Jordan said.
Kendal, where the average age is 84, is generally not a place where
people want heroics. Dr. George Klabaugh, 88, a resident and retired
internist, found himself at the center of controversy a few years back
when he tried to revive a 93-year-old neighbor who had collapsed from
cardiac arrest during a theatrical performance. Dr. Klabaugh, who was
unaware that the man had a “Do Not Resuscitate” order, said he regretted
his “automatic reaction,” a vestige of a professional training that
predisposes most physicians to aggressive care.
Ms. Jordan surveyed Kendal residents and found only one that wanted CPR
— Brad Dewey, 92, who dismissed the statistics. “I want them to try
anyway,” he said. “Our daughter saved a man on a tennis court. Who’s to
say I won’t recover?”
Some of the 400 residents, who pay $120,000 to $400,000 for an entry
fee, and monthly rent from $2,000, which includes all health care, pursue
no-holds-barred treatment longer than others. One woman, for example,
arrived with cardiac and pulmonary disease but was still capable of living
in her own apartment. First, she had
cataract surgery that left her vision worse. Next, during surgery to
replace a worn-out artificial hip, her thigh bone snapped. She spent a
year in bed and wound up with blood clots. Then she broke the other leg.
Only then, Ms. Jordan said, did the woman decide to forgo further
surgery or hospitalizations. The woman was too ill to be interviewed.
Some of those most in tune with slow medicine are the adult children
who watch a parent’s daily decline. Suzanne Brian, for one, was grateful
that her father, then 88 and debilitated by
congestive heart failure, was able to stop medications to end his
life.
“It wasn’t ‘Oh, you have to do this or do that,’ “ Ms. Brian said. “It
was my father’s choice. He could have changed his mind at any time. They
slowly weaned him from the meds and he was comfortable the whole time. All
he wanted was honor and dignity, and that’s what he got.”