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Letter to the Editor
Chicago Tribune
Published Aug. 15, 2009
By Loretta Downs
I was quoted in Anne Moore’s fine piece and very proud to be in her
story. For the last 20 years, I have been a companion to people dying.
In the 80s it was friends with AIDS, then my aged family. Now 60, I have
sat at the bedside of countless friends of all ages, hospice patients
and nursing home residents who were living the end of their lives. We
have to do a better job of preparation.
The economic expense of prolonging death is small compared to the
emotional, spiritual and physical costs we incur treating death like a
disease. It is time we accept and support the process of dying the way
we have come to regard the process of giving birth.
We prepare for birth in advance. We train midwives and doulas. We offer
choices. We teach classes on how to give birth. We share birth with
those we love so no one is born alone. We address the physical pain. We
design comfortable birthing rooms that feel like home in the
institutions where birth occurs. We cherish the experience despite the
necessary unpleasantness that comes with it. We do not fear it; we honor
it.
It is time we face death with the same openness and support we give to
birth. We need to talk about death, the universal, inevitable experience
we will all have. We need to prepare throughout life because death does
not only come to the old. We need to know why “Pull the plug!”, “Just
bury me in the backyard!”, and “My lawyer knows where everything is,” do
not constitute useful advance directives.
Like sex education, we need to be teaching the philosophy of hospice
care in our high schools. We need to require courses in caring for the
dying in all the schools that train professionals to care for the sick.
Most of us will not die at home. We need to create comfortable private
rooms in the institutions where death occurs, providing sacred space for
vigil time where loved ones can gather to hold hands, to say goodbye, to
say I love you, to be there.
It is time we leave this life with as much love and support as we come
in. When we do, the benefits to everyone will far exceed the costs.
Loretta Downs
Family Carer, Hospice Volunteer, Gerontologist,
Founder, Chrysalis End-of-Life Inspirations
President, Chicago End-of-Life Care Coalition
Getting Health Care Healthy
Accepting Death Outside the Hospital
By Anne Moore
Chicago Tribune Aug. 5, 2009
Minneapolis Star Tribune Aug. 28, 2009
Harry and Louise must die
We could save billions in healthcare if we could accept death
and say goodbye outside the hospital
By Anne Moore
Salon.com
August 5, 2009
Next year we'll spend $17 billion in Medicare money on an oxymoron:
preventing inevitable death. So forget for a moment the plans coming out
of Washington. Curing health care is not a question of Obama's blue pill
or Obama's red pill. The answer may be no pill at all.
At the end of our long and increasingly longer lives, when we are
terminally ill and in the last months of life, we must accept our body's
decline, face our own mortality, gather our family and say goodbye. Say
no to feeding tubes, ventilators, resuscitators, the isolation of the
intensive-care unit.
End-of-life care eats up 12 percent of U.S. health-care dollars. That's
not money spent getting well and extending life, that's money spent
preventing and easing death in terminally ill patients. Indeed, 30
percent of Medicare's costs are spent in the last year of life.
Where does the money go? Hospitals. Half of us die in hospitals, 20
percent of us in ICU beds, which cost 10 times as much, on a daily
basis, as hospice care.
Don't blame hospitals or physicians. We check in, we ask to be saved.
We are the problem. We are Harry and Louise, the fictional suburban
couple who keep cropping up in TV ads, paid for by health industry
groups. In 1994, they criticized government involvement in President
Bill Clinton's health-care plan, and now in 2009 they support government
reform in President Barack Obama's plan. In each case, Harry and Louise
embody and fan our fears about limiting care. They want it all -- every
choice, every procedure. Harry and Louise must die.
How did we get into this mess? The 30 percent end-of-life spending rate
hasn't changed since the 1970s, when Medicare began tracking it. We've
been dying poorly -- at great expense -- for decades.
We did this to ourselves. We moved death out of homes and into
hospitals, and once there left poor or no instructions.
Besides, accept death? We're Americans! We're hard-wired to live fully
and richly. We certainly will not go gently into that good night.
Every day we cheat death. We buy automobiles with air bags on all sides,
wear helmets when we bike and face infants backward in car seats. Many
of us feel most alive flirting with death: We jump out of airplanes,
surf with sharks and ski off-piste. We expect to be rescued from an
avalanche and miracles to happen in the ER. How do we know? We've seen
it on TV.
That we fear death is understandable. Among human experience it's the
sole unknown.
But when it comes to dying, we act the same: We call 911 and leave
decisions to medical professionals. We do everything medically possible
to prevent death. We get hooked up. Do we fend off death? Nope.
In a study of terminally ill patients, one group received preventive
care until death. The other group chose to be treated for pain with
drugs, typically morphine, in a hospice setting. Which group lived
longer? Patients treated only for pain lived 29 days more.
Hospice focuses on comforting the terminally ill patient and family, at
a health facility or at home, the last six months of life. If a
terminally ill person in hospice stops breathing, they die. If their
heart stops, they die. If they stop eating, they'll die within weeks.
If a terminally ill person who's hospitalized stops breathing, they're
intubated. If their heart stops, they're resuscitated. If they stop
eating, a feeding tube is implanted. Death is prevented, life is
extended -- but the person is still terminally ill with cancer, or
kidney disease, or heart disease or diseases of the brain.
Medical experts say feeding tubes extend life for those who, in the
past, would die naturally, without medical intervention. When people
near death, some can't swallow, some with dementia don't recognize food,
others aren't interested in eating. In many nursing homes, when a
patient doesn't eat, the choice is to accept end-of-life hospice care or
be fitted with a feeding tube.
Loss of appetite is simply a stage in dying. Dying patients stop eating,
sleep a lot and typically die within two weeks, of dehydration. It can
be a gentle death.
Why should we care which path people take? Well, it comes out of our
pockets. Medicare is funded by payroll taxes, and 75 percent of those
who die each year are 65 or older, enrolled in Medicare. If we died more
gently, we'd cut spending.
How? We ask terminally ill people how they want to die.
Asking doesn't happen often enough, say medical experts who specialize
in care for the dying. Terminally ill patients and their families need
to make end-of-life choices, but they're often not asked to make them in
a hospital setting. When no one asks, and no one answers, guess what?
Hospitals provide aggressive, life-extending care.
That kind of care for the terminally ill hospital patient "is a
preventable category of expenditure," says Dr. Julie Goldstein, section
chief of clinical ethics and palliative medicine at Advocate Illinois
Masonic Medical Center. "It's a preventable tragedy to the patient, and
to the system."
Goldstein says many patients, when asked by physicians whether they want
to die in a hospital or at home with loved ones, "have, of course,
chosen home." That's not always the case, she says. But what's important
is that families be given the choice.
Let's look beyond the financial cost: If you spend your last days in the
ICU, you're necessarily cut off from most people because of risk of
infection. There's no sofa or extra bed for those who want to be with
you as you die. You die alone.
If you spend your last days in hospice care, your family can come and
go. They can sit beside your bed and read to you, or tell you a story.
Is it messy to die at home? Yes. So is birth. We give birth at home; we
YouTube births. We need to do the same for death. We need to welcome it
again into our homes.
For 20 years, Loretta Downs, president of the
Chicago End-of-Life
Coalition, helped people die in a hospice setting. When her mother was
settled into a Chicago nursing home in 2000, Downs noticed the residents
either went off to the hospital and never returned, or died quite
publicly, in shared rooms. Downs envisioned a private place within the
nursing home for residents in their last days of life, with enough space
for family to gather, an extra bed for overnight visits, space for
residents in wheelchairs to come by.
Nursing home directors agreed, and provided dedicated space: a double
room outfitted with one hospital bed and cozy furnishings for visitors.
Downs named it the Chrysalis Room, for the transformational place
caterpillars create before turning into butterflies. Chrysalis Rooms
have been replicated in a dozen nursing homes in the U.S., says Downs,
and more are in the works.
Downs used the room she helped create in 2006 when her mother was dying.
"I moved in. It felt like home. Residents visited; so did nursing home
staff, family and friends. Visiting the dying helps others die," she
says. "We've hidden death."
Better deaths, better parties?
When I was a little girl, I went with my family to a lot of wakes. Most
of my very large family -- I have 50 first cousins -- lived within a few
hours' drive, from Washington to Boston. French, Irish, Catholic: There
were a lot of us, and some of us died. For three days and nights, we
waked the dead. The coffin was open, and there was a stepped platform
beside it, so little tykes like me could view the dead.
My cousins and I would dare each other to touch the body. Usually the
hands. Dare you to move his fourth finger. Just a little. Or we'd stick
coins in the lining. We'd plot and plan and giggle. The only admonition
I ever recall hearing was from my Grammy, a New Yorker through and
through: "Oh, youze kids."
Was there sadness? Of course. But what I remember, fondly, was being in
the embrace of family for several days and nights, celebrating the dead,
comforting the grieving. My uncles told stories, my older cousins
brought us along to the neighborhood bar. I can still remember the
feeling of my scratchy dress on my legs as I swung them from the high
bar stool. "Youze again?" the bartender would tease.
We can change. We can die with dignity and love, less expensively. We
can put our fears to rest. Fill out a living will; say no to excessive
care. Own the way you die. And die as you lived, surrounded by family
and friends.
This article is reprinted with permission from
Salon.com.
Anne Moore is a Chicago journalist.
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