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(Not that I have any serious illness but entering my 8th decade, I am
getting reconciled with the idea that I am in "the mortality zone" as
Tom Brokaw, now dealing with multiple myeloma, puts it. It really
infuriates me that the Catholic Church pressures politicians to oppose
"right to die" laws. I am no afraid of dying as I am of being subjected
to the trauma of a long and debilitating illness that only ends with death.)
NY Times Op-Ed, July 12 2015
Aid-in-Dying Laws Are Just a Start
By KATY BUTLER
cold March day, when she was 84 and suffering from congestive heart
failure, my beautiful mother went to the garage and measured her Camry’s
tailpipe, planning to buy a hose to fit it. She was grieving my father’s
recent death, living alone in Connecticut with occasional visits from
her three grown children in California, and suffering too much chest
pain and breathlessness to weed her beloved garden. “There is a
possibility for a timely escape,” she wrote in the journal I discovered
after her death. “And I will take it.”
She is hardly the first person to yearn to hurry death. The medieval
text “Ars Moriendi” (The Art of Dying) called it “the sin of
impatience.” But times have changed. As Medicare’s announcement last
week of plans to reimburse doctors for end-of-life discussions shows, a
once hidden conversation about medical autonomy and the downsides of
life-support technologies is exploding into the wider culture. In five
states, medical aid in dying is now legal, and bills permitting it have
been introduced in legislatures in more than half of the other states.
As with same-sex marriage and marijuana, the question may be not whether
the laws will change, but when.
I support freedom of choice. But after shepherding my parents through
their last years, I doubt that legalizing aid in dying alone will end
the current epidemic of unnecessary deathbed suffering.
The way the medical system handles death is broken, and requires bigger
fixes than freedom of consumer choice. Many of us will face quandaries
far too nuanced to be solved by aid-in-dying laws. My parents certainly did.
At the age of 79, my father suffered a devastating stroke. A year later,
he was hurriedly given a pacemaker, which prolonged his worst years
while doing nothing to prevent his slide into dementia and misery. When
he was unable to remember the names of all his children, my mother and I
tried, without success, to get his device painlessly deactivated. It was
heart-rending, but in harmony with our values. My father was a stoic.
While still mentally competent, he would not have chosen to end his
life. But he believed in letting nature take its course. My mother and
I, likewise, wanted nature to take my father from us, not an act of his
or our own hands.
Today, a slow, bumpy path to the grave like my father’s is common. About
seven out of 10 of us now live long enough to die from chronic
conditions like heart disease, emphysema, dementia, diabetes, cancer and
kidney failure.
Many will spend years in a “gray zone” where medical choices aren’t
black and white. We will each have to decide when to allow a natural
death and when to say yes to yet another medical technology that might
fend off death without restoring health: implantable defibrillators,
dialysis, feeding tubes, ventilators and the like.
We will need brave, truthful doctors willing to discuss when to stop
fighting for maximum longevity and explore, instead, what may matter
more to us. Like living independently at home for as long as possible.
Like forgoing treatments that are worse than the disease. Like managing
pain. Like living a meaningful life despite physical limitations, and
dying a good death, surrounded by one’s family.
This is the province of palliative care, currently medicine’s tin-cup
specialty. Its doctors integrate curative medicine, symptom management
and shared decision making. Their numbers are too small to meet the need
and their comparatively thin paychecks are often covered by
philanthropies rather than insurance. Adequately paying them requires
redirecting how Medicare money is spent.
Medicare currently pays meagerly for palliative care, hospice and home
nursing. It provides hospice care only to patients willing to forgo all
curative treatments. But it pays oncologists a 4.3 percent markup on
drugs they administer, some costing $10,000 a dose and prescribed after
a cure has become a pipe dream. It will pay over $100,000 for open-heart
surgery on a patient who may be too fragile to survive it.
This helps explain why a quarter of Medicare payments go for treatment
in the last year of life, often last-ditch attempts at cure rather than
care. But in a positive change, Medicare is currently selecting hospices
for a pilot program that will let some patients receive palliative care
without requiring them to forgo what are typically considered curative
treatments. And Medicare’s new willingness to pay for discussions of
end-of-life options is another good step.
Such programs may start to reduce the widely recognized problem of
overly aggressive medical treatment, and attendant suffering, near the
end of life. Studies have found that about a third of Medicare patients
have surgery in their last year of life, and 17 percent die in an
intensive care unit or shortly after a stay. Too many families have
cursed, in hindsight, the false hopes, unheld conversations and rushed
medical decisions that led them there.
And this matters because death is relational. It leaves an emotional
legacy. Everything we do affects those we love, including the manner of
our dying. Witnessing death in an intensive care unit often leaves
family members with depression, anxiety and complicated grief. So does
taking one’s life without saying goodbye.
That is why I am deeply glad my mother did not follow through on her
intentions that March day — and equally grateful she decided not to put
her fragile body through risky heart surgery that might have led her to
a nursing home or a death in an intensive care unit. Instead she died
naturally the following September, a month after she had a heart attack.
The memory of her last weeks under hospice care continues to enrich my
life. She’d been an uber-homemaker: competent, perfectionistic,
self-reliant and far more skilled in caring for others than in accepting
help. Yet the dependence she’d dreaded released in her a sweetness,
acceptance and wisdom that I’d never before known. She had time to say
goodbye to me, and to urge me to “cherish” my longtime partner, Brian.
“I love him for what he’s done for you,” she said.
In the hour of our deaths, most of us will yearn not to cut short our
time but for a “soft technology” of compassion, caring and interpersonal
skill. We will want to give someone our last words and final blessings.
We will probably hope to have someone we love at our side, to be
forgiven for things we regret and to be remembered. To truly die with
dignity, we will need good nursing, practical support, pain management
and kindness. All should be better reimbursed by Medicare.
Liberalizing aid-in-dying laws need not preclude any of this, but it
will not alone supply it. Dying rarely lends itself to workarounds. It
is a messy, nuanced, unpredictable, deeply human, labor-intensive
ordeal, and for most of us, it will always be so. It may involve
suffering and take time. We need to get honest about this, and pay
decently for it.
Katy Butler is the author of “Knocking on Heaven’s Door: The Path to a
Better Way of Death” and the administrator of the Slow Medicine group on
Facebook.
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