Aging & Longevity
Dying in America is Harder Than It
Has to Be – Institute of Medicine
First end-of-life conversation could
coincide with a cherished American milestone of getting a driver's
license at 16
Jenny Gold, KHN Staff Writer
17, 2014 - It is time for conversations about death to become a part of
life. That is one of the themes of a 500-page report, titled "Dying In
America," released Tuesday by the Institute of Medicine.
The report suggests that the first
end-of-life conversation could coincide with a cherished American
milestone: getting a driver's license at 16, the first time a person
weighs what it means to be an organ donor. Follow-up conversations with
a counselor, nurse or social worker should come at other points early in
life, such as turning 18 or getting married.
The idea, according to the IOM, is
to “help normalize the advance care planning process by starting it
early, to identify a health care agent, and to obtain guidance in the
event of a rare catastrophic event."
The 21-member IOM committee that
authored the report grappled with the fact that most Americans have not
documented their wishes for end-of-life care. A national survey in 2013
found that 90 percent of Americans believed it was important to have
end-of-life care discussions with their families, yet less than 30
percent had done so. Those who have had the discussions tend to be
white, higher-income, over 65, and have one or more chronic condition.
In response to these statistics,
the IOM offers a new “life-cycle model of advance care planning” that
envisions people having regular planning conversations as part of their
primary care, and at the diagnosis of any chronic illnesses or genetic
conditions. The conversation would continue at various turning points of
a disease, when spiritual counseling might be offered, and then again in
the final year of expected life.
The report also found that the
American health care system is poorly equipped to care for patients at
the end of life. Despite efforts to improve access to hospice and
palliative care over the past decade, the committee identified major
gaps, including a shortage of doctors proficient in palliative care,
reluctance among providers to have direct and honest conversations about
end-of-life issues, and inadequate financial and organizational support
for the needs of ailing and dying patients.
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Just talking about death and dying
can ignite fear and controversy: Five years ago, the health law’s
proposal for Medicare
to reimburse doctors for counseling patients about living
wills and advance directives became a rallying cry for Republican
opponents of the law who warned about so-called “death panels.” The
reimbursement provision was removed from the Affordable Care Act before
The IOM argues that the country
cannot afford to wait any longer to have a less heated conversation,
especially as the number of elderly Americans continues to grow with the
aging of the baby boom generation.
“At a time when public leaders
hesitate to speak on a subject that is profoundly consequential for the
health and well-being of all Americans, it is incumbent on others to
examine the facts dispassionately, assess what can be done to make those
final days better, and promote a reasoned and respectful public
discourse on the subject,” write Dr. Victor Dzau and Dr. Harvey Fineberg,
the current and former presidents of the IOM in a forward.
The report also addresses how to
palliative care – care that focuses on quality of life and
pain control for people with serious illnesses – more prevalent and
available to all patients.
Over the past decade, palliative
medicine has become a widespread specialty. But while 85 percent of
hospitals with more than 300 beds now have palliative care services,
many patients still may not have access to a specialist, including
those who are not hospitalized or who live in rural areas.
To address the shortage, the
committee writes, all clinicians regardless of specialty “should be
competent in basic palliative care, including communication skills,
interprofessional collaboration, and symptom management.”
Medical schools are currently
required to cover end-of-life care as part of their curriculum, but they
offer an average of just 17 hours of training over all four years. And
end-of-life care is not one of the crucial 15 topic areas for Step 3 of
the medical licensing exams, the final step to becoming a practicing
The committee calls for medical
schools, accrediting boards and state regulatory agencies to bolster
their end-of-life training and certification requirements.
The IOM is an influential body that
the health arm of the National Academy of Sciences. Its
mandate is to provide objective information to advise the public and
policy makers. IOM reports are sometimes undertaken at the request of
Congress, which can also fund the work. “Dying in America” was funded
privately, however, by “a public-spirited donor” who wishes to remain
anonymous, according to Dzau and Fineberg.
>> The report –
Dying in America
News release on report by National Academy of Sciences
This article was produced by Kaiser Health News with support from
The SCAN Foundation.