How to Die
By BILL KELLER
ONE
morning last month, Anthony Gilbey awakened from anesthesia in a
hospital in the east of England. At his bedside were his daughter and an
attending physician.
The surgery had been unsuccessful, the doctor informed him. There was nothing more that could be done.
“So I’m dying?” the patient asked.
The doctor hesitated. “Yes,” he said.
“You’re dying, Dad,” his daughter affirmed.
“So,” the patient mused, “no more whoop-de-doo.”
“On the other side, there’ll be loads,” his daughter — my wife — promised.
The patient laughed. “Yes,” he said. He was dead six days later, a few months shy of his 80th birthday.
When
they told my father-in-law the hospital had done all it could, that was
not, in the strictest sense, true. There was nothing the doctors could
do about the large, inoperable tumor colonizing his insides. But they
could have maintained his failing kidneys by putting him on dialysis.
They could have continued pumping insulin to control his diabetes. He
wore a pacemaker that kept his heart beating regardless of what else was
happening to him, so with aggressive treatment they could — and many hospitals would — have sustained a kind of life for a while.
But
the hospital that treated him offers a protocol called the Liverpool
Care Pathway for the Dying Patient, which was conceived in the 90s at a
Liverpool cancer facility as a more humane alternative to the frantic
end-of-life assault of desperate measures. “The Hippocratic oath just
drives clinicians toward constantly treating the patient, right until
the moment they die,” said Sir Thomas Hughes-Hallett, who was until
recently the chief executive of the center where the protocol was
designed. English doctors, he said, tell a joke about this imperative:
“Why in Ireland do they put screws in coffins? To keep the doctors out.”
The
Liverpool Pathway brings many of the practices of hospice care into a
hospital setting, where it can reach many more patients approaching
death. “It’s not about hastening death,” Sir Thomas told me. “It’s about
recognizing that someone is dying, and giving them choices. Do you want
an oxygen mask over your face? Or would you like to kiss your wife?”
Anthony
Gilbey’s doctors concluded that it was pointless to prolong a life that
was very near the end, and that had been increasingly consumed by pain,
immobility, incontinence, depression and creeping dementia. The patient
and his family concurred.
And so the
hospital unplugged his insulin and antibiotics, disconnected his
intravenous nourishment and hydration, leaving only a drip to keep pain
and nausea at bay. The earlier bustle of oxygen masks and thermometers
and blood-pressure sleeves and pulse-taking ceased. Nurses wheeled him
away from the wheezing, beeping machinery of intensive care to a quiet
room to await his move to “the other side.”
Here in the United States, nothing bedevils our discussion of health care like the question of when and how to withhold it. The Liverpool Pathway
or variations of it are now standard in most British hospitals and in
several other countries — but not ours. When I asked one American
end-of-life specialist what chance he saw that something of the kind
could be replicated here, the answer was immediate: “Zero.” There is an
obvious reason for that, and a less obvious reason.
The
obvious reason, of course, is that advocates of such programs have been
demonized. They have been criticized by the Catholic Church in the name
of “life,” and vilified by Sarah Palin and Michele Bachmann in the
pursuit of cheap political gain. “Anything that looks like an official
protocol, or guideline — you’re going to get death-paneled,” said Dr.
Ezekiel Emanuel, the bioethicist and expert on end-of-life care who has
been a target of the rabble-rousers. (He is also a contributing opinion
writer for The Times.) Humane end-of-life practices have quietly found
their way into cancer treatment, but other specialties lag behind.
The
British advocates of the Liverpool approach have endured similar
attacks, mainly from “pro-life” lobbyists who portray it as a back-door
form of euthanasia. (They also get it from euthanasia advocates who say
it isn’t euthanasia-like enough.) Surveys of families that use
this protocol report overwhelming satisfaction, but inevitably in a
field that touches families at their most emotionally raw, and that
requires trained coordination of several medical disciplines, nursing
and family counseling, the end is not always as smooth as my
father-in-law’s.
The less obvious problem, I
suspect, is that those who favor such programs in this country often
frame it as a cost issue. Their starting point is the arresting fact
that a quarter or more of Medicare costs are incurred in the last year
of life, which suggests that we are squandering a fortune to buy a few
weeks or months of a life spent hooked to machinery and consumed by fear
and discomfort. That last year of life offers a tempting target if we
want to contain costs and assure that Medicare and Medicaid exist for
future generations.
No doubt, we have a
crying need to contain health care costs. We pay more than many other
developed countries for comparable or inferior health care, and the
total bill consumes a growing share of our national wealth. The
Affordable Care Act — Obamacare — makes a start by establishing a board
to identify savings in Medicare, by emphasizing preventive care, and by
financing pilot programs to pay doctors for achieving outcomes rather
than performing procedures. But it is barely a start. Common sense
suggests that if officials were not afraid of being “death-paneled,” we
could save some money by withholding care when, rather than saving a
life, it serves only to prolong misery for a little while.
But I’m beginning to think that is both questionable economics and bad politics.
For
one thing, whatever your common sense tells you, there is little
evidence so far that these guidelines do save money. Emanuel has studied
the fairly sketchy research and concluded that, with the possible
exception of hospice care for cancer patients, measures to eliminate
futile care in dying patients have not proved to be significant cost-savers. That seems to be partly because the programs kick in so late, and partly because good palliative care is not free.
Even
if it turns out that programs like the Liverpool Pathway save big
money, promoting end-of-life care on fiscal grounds just plays into
fears that the medical-industrial complex is rushing our loved ones to
the morgue to save on doctors and hospital beds.
When
I asked British specialists whether the Liverpool protocol cut costs,
they insisted they had never asked the question — and never would.
“I
don’t think we would dare,” said Sir Thomas. “There was some very nasty
press here in this country this year about the Pathway, saying it was a
way of killing people quickly to free up hospital beds. The moment you
go into that argument, you might threaten the whole program.”
In
America, nothing happens without a cost-benefit analysis. But the case
for a less excruciating death can stand on a more neutral, less
disturbing foundation, namely that it is simply a kinder way of death.
“There are lots of reasons to believe you could save money,” said Emanuel. “I just think we can’t do it for the reason of saving money.”
During
Anthony Gilbey’s six days of dying he floated in and out of awareness
on a cloud of morphine. Unfettered by tubes and unpestered by hovering
medics, he reminisced and made some amends, exchanged jokes and
assurances of love with his family, received Catholic rites and managed
to swallow a communion host that was probably his last meal. Then he
fell into a coma. He died gently, loved and knowing it, dignified and
ready.
“I have fought death for so long,” he told my wife near the end. “It is such a relief to give up.”
We should all die so well.