End-of-life care: Nobody ever wants to talk about it
But doctors and insurers might finally force patients to plan.
Updated:
Few people are eager to discuss dying.
Hospitals, doctors and insurers
in New York, however, are increasingly pressing patients to decide in
advance whether they want high-tech interventions when death seems near,
even if they prolong life only for a short time and at great cost to
the health system.
"Somehow we have to change the public dialogue. Why can't you talk
about death?" asked Dr. Kenneth Davis, president and chief executive of
the Mount Sinai Health System, speaking at The Atlantic magazine's annual health care forum in March.
Doctors, hospital officials and policymakers around the country are
proposing new measures to encourage—perhaps even require—people to sign
legal documents known as advance directives, which spell out which
interventions a patient wants for end-of-life care so that families
aren't forced to make assumptions.
The push to complete advance directives is presented as a pro-patient
way to spare people the pain of medical interventions that may be
futile. But high-tech exits can hurt hospitals and insurers, too. An
estimated 25% of Medicare spending nationally is on end-of-life care.
Likewise, the national percentage of chronically ill Medicare
patients who died in hospitals was 25%, according to a Dartmouth Atlas
of Health Care study on Medicare spending in 2010. But in Manhattan,
that 2010 rate was nearly 44%, and among a group of 23 teaching
hospitals, the rate at Mount Sinai was the highest.
Dr. Davis would like the federal government to require Medicare
beneficiaries to sign the directives as a condition of enrollment. Dr.
Davis declined to say whether he believes that is likely to happen.
"I can't tell you how many times this conversation takes place about
end-of-life care: One child says one thing, the second child says
another, and the wife says something else. No one knows what Dad wants.
So you do everything," said Dr. Davis.
No one knows how much of the intense medical care now given at the
end of life is unwarranted, or how many patients would have refused that
care if they had signed a directive. But widespread concern about cost
is driving the push to get the paperwork rolling earlier.
To entice patients to sign advance directives, some New York state
proposals call for paying people to sign them, paying higher
reimbursements to physicians who get patients to complete them, and
setting up insurance plans with lower co-pays for people who fill out
the forms.
New York's high rate of in-hospital deaths is particularly
frustrating for Mount Sinai, which has a much-praised palliative care
program. That approach to dying, with an emphasis on the patient's
comfort and home care, is very different from the high-tech
interventions typical of an intensive care unit.
"Some studies have described a death in an ICU tethered to machines
as a fate worse than death," said Dr. Sean Morrison, director of Mount
Sinai's Hertzberg Palliative Care Institute.
Following the feds
Mount Sinai will soon expand palliative care to all hospitals in its
3,000-bed system, and is doing everything it can to publicize the need
for advance directives. It recently received a $10 million gift to fund
the formation of the Patty and Jay Baker National Palliative Care Center
at Mount Sinai, which will support public policy, education, training,
national outreach and research on access to such care.
On the national front, a bipartisan U.S. Senate bill sponsored by Tom
Coburn, R-Okla., and Chris Coons, D-Del., would pay Medicare enrollees
an incentive, likely around $75, for signing the documents.
Insurers have also weighed in. Excellus BlueCross BlueShield in
Rochester pays members $25 for completing a health care proxy, one kind
of advance directive, as part of its wellness incentive program, said
Dr. Patricia Bomba, vice president and medical director, geriatrics.
Excellus also pays physicians an enhanced reimbursement rate to engage
in shared decision making with seriously ill patients about completing a
Medical Orders for Life-Sustaining Treatment form and to develop a care
plan to support those medical orders, she said.
Time to sign?
Commercial insurers typically follow Medicare's lead on payments, so a
system of financial incentives could become the norm. That troubles some
advocates.
"Dying in an ICU is a bad thing, everyone would agree," said Carol
Levine, director of the United Hospital Fund's Families and Health Care
Project. "On the other hand, foreclosing your options when you don't
know what your medical situation would be to save a little money is a
bad idea."
Critical care medicine once saved her husband's life, she added,
giving him extra years with his family before he died. Advance directive
documents "are only as good as the conversation that precedes them,"
she said, meaning that people should talk frankly with their family
members and doctors about what kind of care they would want in various
situations.
Dr. Thomas Madejski, an upstate internist and palliative care
specialist who is assistant treasurer of the Medical Society of the
State of New York, said he wasn't opposed to financial incentives. But
he finds the documents most useful for patients who are extremely ill.
Even then, if a spouse does not want to let go, it can be difficult to
withhold hospital care. Hospitals almost never enforce directives if
they are pressured by a family member to continue treatment.
"I had a gentleman who had had a number of strokes, who had dementia,
an aortic aneurysm, and still his wife wanted everything done," Dr.
Madejski said. "He had a long, lingering death, three years in a nursing
home and repeated hospitalizations."
He estimated the cost of the man's care at more than $400,000. "I
felt bad for the guy, and I never had a clear sense of where the wife
was coming from," he said.
"Fortunately, these cases are rarer than they were," Dr. Madejski
added. "But we have a lot to do to educate the general population that
we all pass away at some point."
Correction: Excellus BlueCross BlueShield pays members
$25 for completing a health care proxy, and pays doctors a higher rate
to discuss a Medical Orders for Life-Sustaining Treatment form with
seriously ill patients. Those facts were misstated in an earlier version
of this article originally published online on June 3, 2014.
A version of this article appears in the June 2, 2014, print issue of Crain's New York Business as "Nobody wants to ever talk about it".
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