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The New York Times/ - Politics, Sex, 30 de Março de 2012
CLIPPING INTERNACIONAL (Supreme Court)
Taking Responsibility for Death
I WAS standing by my 89-year-old mother’s hospital
bed when she asked a doctor, “Is there anything you
can do here to give me back the life I had last year,
when I wasn’t in pain every minute?” The young
medical resident, stunned by the directness of the
question, blurted out, “Honestly, ma’am, no.”
And so Irma Broderick Jacoby went home and lived
another year, during which she never again entered a
hospital or subjected herself to an invasive, expensive
medical procedure. The pain of multiple degenerative
diseases was eased by prescription drugs, and she
died last November after two weeks in a hospice, on
terms determined by explicit legal instructions and
discussions with her children — no respirators, no
artificial feeding, no attempts to buy one more day for
a body that would not let her turn over in bed or
swallow without agony.
The hospice room and pain-relieving palliative care
cost only about $400 a day, while the average hospital
stay costs Medicare over $6,000 a day. Although
Mom’s main concern was her comfort and dignity, she
also took satisfaction in not running up Medicare
payments for unwanted treatments and not leaving
private medical bills for her children to pay. A third of
the Medicare budget is now spent in the last year of
life, and a third of that goes for care in the last month.
Those figures would surely be lower if more
Americans, while they were still healthy, took the
initiative to spell out what treatments they do — and do
not — want by writing living wills and appointing health
care proxies.
As the aging baby boom generation places
unprecedented demands on the health care system,
there is little ordinary citizens can do — witness the
tortuous arguments in the Supreme Court this week
over the constitutionality of the Affordable Care Act —
to influence either the cost or the quality of the
treatment they receive. However, end-of-life planning
is one of the few actions within the power of individuals
who wish to help themselves and their society. Too
few Americans are shouldering this responsibility.
Of course many people want more aggressive
treatment than my mother. And advance directives
aren’t “death panels”; they can also be used to ensure
the deployment of every tool of modern medicine.
They can be changed or withdrawn at any time by a
mentally competent person.
But public opinion polls consistently show that most
Americans, like my mother, worry about too much
rather than too little medical intervention. In a Pew
Research Center poll released in 2006, only 22
percent said a doctor should always try to save a
patient’s life, while 70 percent believed that patients
should sometimes be allowed to die. More than half
said they would tell their doctor to end treatment if they
were in great pain with no hope of improvement.
Yet only 69 percent had discussed end-of-life care with
a spouse; just 17 percent, or 40 percent of those over
65, had done so with their children. One-third of
Americans had a living will and even fewer have taken
the more legally enforceable measure of appointing a
health care proxy to act on their behalf if they cannot
act for themselves.
The latter omission is especially disturbing because by
2030, more than 8.5 million Americans will be over 85
— an age at which roughly half will suffer from
Alzheimer’s disease or some other form of irreversible
dementia. For many members of the baby boom
generation — more likely to be divorced and childless
than their parents — there may be no legal next of kin.
Without advance directives, even a loving child may be
ignorant of her parent’s wishes. My mother remained
conscious and in charge of her care until just a few
days before she died, but like most women over 85,
she was a widow. My younger brother died of
pancreatic cancer two weeks before she did. It was an
immense comfort to me, at a terrible time, to have no
doubts about what she wanted.
My mother drew up her directives in the 1980s, when
she was a volunteer in the critical care lounge of her
local hospital. She once watched, appalled, as an adult
daughter threw a coffeepot at her brother for
suggesting that their comatose mother’s respirator be
turned off. Because the siblings could not agree and
the patient had no living will, she was kept hooked up
to machines for another two weeks at a cost (then) of
nearly $80,000 to Medicare and $20,000 to her family
— even though her doctors agreed there was no
hope.
The worst imaginable horror for my mother was that
she might be kept alive by expensive and painful
procedures when she no longer had a functioning
brain. She was equally horrified by the idea of family
fights around her deathbed. “I don’t want one of you
throwing a coffeepot at the other,” she told us in a
half-joking, half-serious fashion.
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