August 6, 2010 10:58 PM
Hospice - when it's time to let go
A remarkable article and one I think every one could benefit from reading as each of us has faced or will face end-of-life questions with loved ones. Based on his own experience,
Atul Gawande, an American surgeon and journalist, shows us how - though most people hope for a peaceful and dignified death at home - so many end up in a very different sort of struggle.
You might want to print this out to read yourself and share with others. At 12,000 words, this is a long, thoughtful and multi-faceted look at the dynamics set in motion when a patient receives a diagnosis of cancer and the medical community goes to work to solve it.
Gawande's observation is that unless the right questions are asked in the beginning, a person who turns out to be terminally ill may end up on a treatment treadmill that will rob the last years of life of the quality they would have wished for had they been encouraged to reflect when it would have made a difference.
Letting Go
What should medicine do when it can't save your life?
Modern medicine is
good at staving off death with aggressive interventions--and bad at
knowing when to focus, instead, on improving the days that terminal
patients have left.
Sara Thomas Monopoli was
pregnant with her first child when her doctors learned that she was
going to die. It started with a cough and a pain in her back. Then a
chest X-ray showed that her left lung had collapsed, and her chest was
filled with fluid. A sample of the fluid was drawn off with a long
needle and sent for testing. Instead of an infection, as everyone had
expected, it was lung cancer, and it had already spread to the lining of
her chest. Her pregnancy was thirty-nine weeks along, and the
obstetrician who had ordered the test broke the news to her as she sat
with her husband and her parents. The obstetrician didn't get into the
prognosis--she would bring in an oncologist for that--but Sara was
stunned. Her mother, who had lost her best friend to lung cancer, began
crying.
The doctors wanted to start treatment right away, and that
meant inducing labor to get the baby out. For the moment, though, Sara
and her husband, Rich, sat by themselves on a quiet terrace off the
labor floor. It was a warm Monday in June, 2007. She took Rich's hands,
and they tried to absorb what they had heard. Monopoli was thirty-four.
She had never smoked, or lived with anyone who had. She exercised. She
ate well. The diagnosis was bewildering. "This is going to be O.K.,"
Rich told her. "We're going to work through this. It's going to be hard,
yes. But we'll figure it out. We can find the right treatment." For the
moment, though, they had a baby to think about.
"So Sara and I
looked at each other," Rich recalled, "and we said, 'We don't have
cancer on Tuesday. It's a cancer-free day. We're having a baby. It's
exciting. And we're going to enjoy our baby.' " On Tuesday, at 8:55 P.M., Vivian Monopoli, seven pounds nine ounces, was born. She had wavy brown hair, like her mom, and she was perfectly healthy.
The
next day, Sara underwent blood tests and body scans. Dr. Paul Marcoux,
an oncologist, met with her and her family to discuss the findings. He
explained that she had a non-small cell lung cancer that had started in
her left lung. Nothing she had done had brought this on. More than
fifteen per cent of lung cancers--more than people realize--occur in
non-smokers. Hers was advanced, having metastasized to multiple lymph
nodes in her chest and its lining. The cancer was inoperable. But there
were chemotherapy options, notably a relatively new drug called Tarceva,
which targets a gene mutation commonly found in lung cancers of female
non-smokers. Eighty-five per cent respond to this drug, and, Marcoux
said, "some of these responses can be long-term."
Words like
"respond" and "long-term" provide a reassuring gloss on a dire reality.
There is no cure for lung cancer at this stage. Even with chemotherapy,
the median survival is about a year. But it seemed harsh and pointless
to confront Sara and Rich with this now. Vivian was in a bassinet by the
bed. They were working hard to be optimistic. As Sara and Rich later
told the social worker who was sent to see them, they did not want to
focus on survival statistics. They wanted to focus on "aggressively
managing" this diagnosis.
Read more at The New Yorker
This is also an article about
hospice services, which help support terminal patients at home. In 2005, 1/3 of all US deaths were under the care of a hospice program. And the average length of service was 57-59 days.
See also
History of Hospice Care
Posted in Death and dying, Health | Permalink
Comments
This is the most important article you have ever linked to from you site. I read the entire article. Thank you.
Posted by: Imajackson | August 8, 2010 12:48 AM
My husband is a part time hospice chaplain and I'm a volunteer. Thank you for giving me more insight than I already had into this important aspect of end of life care. Too many people don't realize what a blessing hospice can be for their loved ones. Thanks for sharing.
Posted by: Drewe Llyn Jeffcoat | August 8, 2010 2:46 PM
This was an excellent article--very thought provoking. I read the entire article, and it made me think about my Mom and Dad and my in-laws and decisions that we will inevitably face as they grow older. And of course you never know when you might face those decisions as a young person just like Sara and Rich.
Posted by: Karen E. | August 8, 2010 3:49 PM
I used to be very supportive of Hospice but have learned that Hospice's original compassionate mission has, in a number of instances, been corrupted and infiltrated by euthanasia enthusiasts. My doctor told me that Hospice is "the Culture of Death".He told me about a patient who was sedated into unconsciousness unnecessarily. My friend who worked as an LPN at a senior citizen lifecare facility said Hospice patients were given generic morphine when they didn't need it - part of the protocol when Hospice took over their care. Terri Schiavo was denied the right to hydration and nutrition at the Woodside Hospice in Florida and Fr. Frank Pavone who visited her said he could see she was suffering. Many more instances are documented at the links below.
http://www.hospicepatients.org/articles-from-heart-of-ron-panzer.html
Go to the bottom of this Wikipedia page to find hot links such as “Hospice a Trojan Horse for Euthanasiaâ€,. “Hospice Nurse: I Don’t Kill†and 2 articles about Terri Schiavo..
http://wik.ed.uiuc.edu/index.php/Hospice_movement#Critics_and_their_rationale
Posted by: Judy | August 9, 2010 9:28 AM
Judy -
I so appreciate your contribution.
Before I read this article, I was of the opinion that Hospice was just about morphining patients to death. I no longer think that and plan to ask for hospice for myself and use it for my family if the need arises. However, I am making sure my family reads this article and your links so that they will be able to supervise hospice.
As much as I hate the concept of Obamacare's death panels, I also hate the American way of death, which so often involves way too much over-intervention. I for one do not want to die in a hospital with my family trying fanatically to hold on to me. When it's time to go, I want them to let me go. And I want to be ready to let someone go when it is time as well.
As believers, I don't know why we have such problems with this.
I felt that this article went a long way to explaining why the medical establishment behaves s it does - because it's their job to solve problems. And I felt empowered to make better decisions when the time comes.
Thanks for your input too as it will help all of us make better decisions.
Posted by: Barbara | August 9, 2010 11:47 AM
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