Five years after U.S. Sen. Mark Warner's mother died of Alzheimer's, he
is still haunted by what he might have done differently for her — if
only he had known her wishes.
When the disease first took hold of
Marjorie Warner in about 2000, her son was already a wealthy, self-made
businessman, on his way to being elected Virginia's governor the
following year. He prided himself on being a take-charge executive who
could solve tough problems.
But after his mother was stricken, none of his money or experience really mattered.
It
wasn't that Alzheimer's, which slowly destroys a person's memories and
cognitive abilities, was incurable. It wasn't that private nursing care
is pricey - his family had access to the best health care available.
What
gnawed at the senator then — and still does today — is that he, his
parents and his sister never had what he calls "the conversation" before
his mother became too ill in the waning years of her life.
The warning signs were there. Her own parents had died from the disease.
Still,
despite nagging worries about what was to come, they never had that
difficult but necessary conversation about how she wanted to approach
the last years of her life. How aggressive should her doctors be in
trying to extend her life? Would she want to be put on a feeding tube?
Nothing that would have helped guide them when decisions had to be made
about her advanced care.
"I think she was always afraid of getting
Alzheimer's. But there was never a question of 'When do you let go?'
'How many extraordinary additional actions do you take?' " Warner said.
"She came up from that generation of having that fear of being put in a
nursing home. I think a lot of people did."
His lingering
frustration is fueling an effort to pass legislation that would launch a
national campaign to encourage people to set up advanced-care plans.
His bill also would establish a new Medicare benefit to cover the cost
of professional counseling with health care professionals about
long-term care planning.
Two years ago, Warner and Sen. Johnny
Isakson, a Georgia Republican, introduced similar legislation that went
nowhere. In the coming weeks, he and Isakson will try again, introducing
a new care-planning bill.
Warner seldom talks at length about his
family. But he has spoken in more detail about his mother's disease,
hoping that his family's experience will help others see the importance
of his legislation.
"Everybody has got a personal story," Warner
said in a recent interview. "My story is my mom. For 11 years she had
Alzheimer's, and nine of those years, she couldn't speak."
The
Warners, who lived in the Connecticut city of Vernon, northeast of
Hartford, were a close-knit family, The senator describes his mom as a
1960s housewife, who in a later era would have had a professional
career. His father, now retired, worked in the insurance industry.
His mother's influence on him was immense.
He
credits her with sparking his love of reading, and his sense of
organization. He was the first in his family to graduate from college,
and he later earned a law degree from Harvard University.
Watching
the disease "chip away at her" was particularly hard, Warner said,
because — like him — she was an energetic, social person. "She loved
people."
After her diagnosis, Warner's father, Robert, and sister, Lisa, stepped in to take care of her at home.
"My
dad," Warner said, pausing. "I think the hardest thing I can imagine is
what he and my sister did for more than a decade. Taking care of her
24-7, with some additional help."
"Since we hadn't ever had the
full conversation, near the end — particularly for my dad and my sister —
it was harder to let go," he said. "There were times we were choosing
things in intensive care near the end that I just personally felt she
would have preferred..." Warner said, not completing his thought.
Marjorie Warner died Jan. 23, 2010, in her Connecticut home. She was 81.
The Warner family's experience is all too common, said Eric Sokol, a vice president of the Alzheimer's Foundation of America.
"Not
everyone has an opportunity to set up their wishes," Sokol said. "It's
an uncomfortable discussion. It's a topic not a lot of people want to
deal with."
A key element of Warner's legislation would compensate
doctors, nurses and other professionals to work as a team in discussing
with a patient his or her long-term desires, explain how a disease
would progress, and assist the patient in drafting a care plan. The
advanced directive, which makes clear what the patient wanted, would be
transferable to whatever state the patient might move to.
Warner said such planning also would involve clergy, should the patient want them included.
"This is something that would have been harder to talk about 10 or 15 years ago," he said.
Heeding
his own advice, Warner, 60, and his wife, Lisa, have discussed care
options for themselves, and the senator has prepared his own advanced
directive.
He's not certain how his bill will fare this session.
Past efforts have run into opposition because of the costs associated
with providing the services. His new bill has not yet been reviewed by
the Congressional Budget Office, so the cost estimates haven't been
determined. Some also worry about negative associations that come with
frank discussions about end-of-life care.
"There will always be
opposition," Warner said. "This is about saying 'Do you really want to
have a fourth time of resuscitation?' "
Warner has particular
disdain for former Republican vice presidential candidate Sarah Palin,
who falsely claimed that the 2009 Affordable Care Act included "death
panels" that would decide patients' fate.
Warner said Palin's
irresponsible comments scared people and set back serious consideration
about the importance of long-term care planning.
"It was just
awful," he said. "We're talking about expanding choices and not limiting
anyone access to health care…. It's about having a conversation."
Source: NewsLeader
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