Two months before Joe Clark died of colon cancer at age 31, a doctor gently told him it was time to stop treatment.
He had suffered through more than a year of
chemotherapy that produced painful sores in his mouth, last-ditch major
abdominal surgery had left behind excruciating scar tissue, and hope had
dried up. But the end of treatment had a surprise effect on Clark and
his wife.
Amanda
Evans-Clark reads a book with her daughter, Mira, 2, in Carmel, Ind.
The book features voice recordings from her husband, Joe Clark. He died
of advanced colon cancer at 31, after a year of chemotherapy and
last-ditch major abdominal surgery. The decision to end treatment had a
surprise effect on Clark and his wife. Michael Conroy / Associated Press
"It was a whole new way of thinking to wrap our
minds around," his widow, Amanda Evans-Clark recalled. No more "fight
mode," she said. "We finally felt like we were allowed to live."
When to stop aggressive treatment is one of the
most wrenching decisions in cancer care. Medical guidelines say dying
cancer patients shouldn't get harsh and painful treatment, but new
research suggests it happens almost all of the time.
During their last month alive, three out four
cancer patients younger than 65 got too-aggressive treatment and only a
handful got comfort-based hospice care instead, according to the recent
study.
There are many reasons why, but one of them is
this, said University of Chicago palliative care specialist Dr. Monica
Malec: "There's nearly nothing harder than being faced with a patient
who's begging you not to give up on them."
Dying patients and their families are sometimes
in denial about their illness, and sometimes don't understand the
limitations of medical treatment, the researchers and other specialists
say. Related: Americans Get Overtreated to Death
Those misunderstandings can often be avoided if
doctors begin end-of-life conversations early in the process of treating
patients whose cancers are likely to be deadly. But those talks often
never happen, Malec said, or they don't happen until the situation has
progressed to crisis, because they're just too difficult.
The new study is an analysis of health claims
data involving more than 28,000 cancer patients who died between 2007
and 2014. Their end-of-life treatment included hospitalizations,
chemotherapy and invasive procedures. Fewer than one in five patients
received hospice care.
"There are hundreds, if not thousands, who
undergo too much therapy and too much suffering for every one person
that we have who ends up having a miracle," said Dr. Otis Brawley, the
American Cancer Society's chief medical officer.
The study was presented Monday in Chicago at the American Society of Clinical Oncology's annual meeting.
Dr. Ronald Chen, the study's lead author and a
cancer specialist at the University of North Carolina in Chapel Hill,
said the decision is still a struggle, even when he knows hospice might
be the right choice. "If I can offer chemotherapy or if I can offer
radiation treatment, then I'm not giving up hope," he said.
Wendy Sparks of Oklahoma City says watching her
elderly mother and younger sister both die of cancer within the last
three years changed her thoughts about end-of-life treatment.
Her mother stopped chemo after her doctor
assured her that ending treatment didn't mean giving up. But her sister,
Nikki Stienman, kept up the treatment and suffered severe side effects
from what her sister thinks was a needless final round of chemotherapy
before she died at 38 of metastatic lung cancer in 2013.
"You're not giving up if you don't do
treatment," Sparks said. "You're still fighting for your life, in a
different way. You're fighting to have good days." Related: Cancer Doctors Avoid Saying it's the End
Dr. Andrew Epstein, a palliative care expert
with the oncology society, said the new research, which echoes studies
in older cancer patients, is important because less is known about
end-of life care for younger patients.
Too few doctors know about hospice, which is among the best but most underused resources, he said.
But abandoning treatment and seeking hospice
care is sometimes seen as surrendering, especially with young patients,
said American Cancer Society's Brawley. "When you're dealing with young
people, in their 40s, 50s, even 60s, it's just so difficult to accept
that this person is going to die," he said.
Joe Clark, an Orlando, Florida businessman, was
diagnosed in 2011, two days before his 28th birthday and two months
before his wedding. Instead of a honeymoon, he had chemotherapy.
The treatments seemed to work, until a year
later, when shortly after his wife learned she was pregnant, tests
showed the cancer had spread aggressively.
"No one uses the words like, 'incurable,'"
Evans-Clark said. "We said what's next, and I remember hearing, 'you're
going to be on chemotherapy, and we said, 'How long?' And they said,
'indefinitely.'" She recalls turning to look at her husband, "and he
just broke down crying."
The couple created a blog detailing their cancer ordeal. In an entry
four months before he died, next to a photo of nine pill bottles on his
night table, Clark wrote, "I don't want to take any of them, but the
doctor says I have to ... This isn't what they said was supposed to be!
I'm supposed to enjoy all the small moments; all the ones that seem to
matter the most, yet we let them slip from our attention so quickly.
Because of the treatment plan, I can't even do that." Related: It Pays off to Talk About Dying
Evans-Clark remembers agonizing discussions with
her husband about quantity versus quality of life. Major abdominal
surgery failed to stop cancer's spread. Chemo had caused mouth sores and
there were problems with the ostomy bag that replaced his diseased
intestines.
"I remember looking at him and he was so thin,
and he was so depressed, and everything that made him a man ... had been
taken from him," she said.
They moved to Indianapolis, where a doctor finally sat them down and said, "I don't think this is worth it any more."
It was an epiphany.
Clark starting receiving comfort care at a
hospice center that felt more like home than a hospital, where he could
finally focus only on spending time with his wife and baby daughter.
"I was able to be his wife versus being the one
pushing all the meds," Evans-Clark said. "I was only given two more
months with him but I would say they were some of the best months I had
with him."
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