Caregiver & Elder Care News
Suffering at end of life getting worse, not better for
Family member asked whether the
dying person - age 50 plus - suffered pain, depression or periodic confusion
By Jenny Gold, Kaiser Health News
Feb. 3, 2015 - It’s been more than 15 years since the Institute of
Medicine released its
seminal 1997 report detailing the suffering many Americans
experience at the end of life and offering sweeping recommendations on
how to improve care. So has dying in America gotten any less painful?
efforts to build hospice and palliative care programs across
the country, the answer seems to be a resounding no. The number of
Americans experiencing pain in the last year of life actually increased
by nearly 12 percent between 1998 and 2010, according to
a study released Monday in the
Annals of Internal Medicine. In addition, depression in the
last year of life increased by more than 26 percent.
That’s the case even though guidelines and quality
measures for end-of-life care were developed, the number of palliative
care programs rose and hospice use doubled between 2000 and 2009.
“We’ve put a lot of work into this and it’s not
yielding what we thought it should be yielding. So what do we do now?”
asked study author Dr. Joanne Lynn, who directs the Center for Elder
Care and Advanced Illness at the Altarum Institute.
The study looked at 7,204 patients who died while
enrolled in the national Health and Retirement study, a survey of
Americans over age 50. After each participant’s death, a family member
was asked questions about the person’s end-of-life experience, including
whether the person suffered pain, depression or periodic confusion.
Those three symptoms were all found to have become more prevalent over
the 10-year analysis.
One reason, Lynn said, is that doctors are using a
greater range of high-tech treatments, which can lengthen the process of
dying without curing the patient. “We throw more medical treatment at
patients who are on their way to dying, which keeps them in a difficult
situation for much, much longer,” she said. “We’ve increased the number
of people put on ventilators and kept in hospitals, and we simply have
more treatments that are possible to offer.”
The majority of our research, she added, focuses on
wiping out diseases, rather than long-term supports or symptom
management for people with chronic conditions or disabilities associated
with aging: “Think about how much we invest in curing Alzheimer’s
disease, and how little we put into making the course of Alzheimer’s
Most physicians tend to under-treat pain and other
symptoms at the
end of life because they don’t recognize them or are hesitant
to talk candidly about the process of dying and the pain associated with
it, said Dr. Tim Ihrig, a palliative care physician at UnityPoint Health
in Fort Dodge, Iowa.
“A lot of practitioners aren’t honest. We fail to
empower patients with the truth,” said Ihrig. “In that setting, it’s
easier to continue to do procedures and diagnostics rather than having
that conversation, which is very honest and very difficult.”
Take a cancer patient who has stopped eating and is
writhing in pain, he said. An oncologist might recognize the person is
going to die, but rather than telling the patient, he or she begins
another round of treatment that causes more pain and suffering.
“We don’t have the vernacular in our society to
have the conversation about the end of life. People say, ‘I don’t want
to take away someone’s hope.’ But in a metastatic pancreatic cancer, for
example, we have to redefine what we mean by hope,” he said, citing one
of the most deadly cancers.
Often, those conversations aren’t happening until
the last days or hours of life, according to Ihrig.
Jonathan Keyserling, a senior vice president with
the National Hospice and Palliative Care Organization, points out that
half of all hospice patients receive hospice care for less than 30 days.
“If these patients had been under the care of a
hospice or palliative care program [earlier], their pain and symptoms
could have been brought under control for a much longer and sustained
period of time,” Keyserling said via email.
It’s possible, however, that caregivers interviewed
in the study simply reported more suffering, reflecting Americans’
changing awareness of pain and depression over the past decade.
“We’ve raised the expectation of better pain
management over the years, which may make [the caregivers interviewed]
more likely to report it,” says Rosemary Gibson, author of The Treatment
Trap and senior advisor at The Hastings Center, a bioethics think tank
based in New York. There are many more Americans diagnosed with
depression today than in 1998, she added, “so it’s not surprising that
people would report it more.”
Nonetheless, Gibson said, the country has a long
way to go in improving care at the end of life. The increase in
palliative care and hospice use over the last decade was just “an oasis
in the desert. We did nothing to stop the tsunami of overuse [of
aggressive treatments] and doing things to people at the end of life
that have no benefit.”
It’s time to pick up the speed of change, said
study author Joann Lynn.
“We are all going to pass through this part of our
lives, and we have a strong interest in its not being awful. So let’s
buckle down and get it right.”
This article was produced by Kaiser Health News with support from
The SCAN Foundation.
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