How to Die
By BILL KELLER
Published: October 7, 2012 New York Times
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 significatne 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.
Is there a good way
to deliver bad news?
BY STEPHANIE BEASLEY
THE BALTIMORE SUN, 10/1/2006
I never understood what it felt like physically, until I had to go through it. It’s like a pain in your chest,” says Dr. Rhonda S. Fishel, associate chief of surgery at Sinai Hospital in Baltimore, who has a rare cancer. She says that patients often remember more about how their doctor broke painful news than they do the diagnosis.
When her partner, Mickey Barron, was diagnosed with breast cancer in 2001, Dr. Rhonda Fishel accompanied her to the oncologist’s office. As an experienced surgeon, Fishel was no Stranger to the delivery of bad news. She was the one who jotted notes furiously as the doctor discussed treatment options, while Barron’s mind struggled just to get past the word “cancer.”
“He was going on about treatments, and I was gone,” Barron recalled. “I was too Stressed out.”
Four years later, when Fishel was diagnosed with a rare cancer called uterine sarcoma, it was Barron’s turn to listen carefully as her partner sat numbly.
“I never understood what it felt like physically, until I had to go through it. It’s like a pain in your chest,” said Fishel, 51, who has reduced her hours as associate chief of surgery at Sinai Hospital in Baltimore and director of its intensive care unit since being diagnosed and treated.
Fishel is convinced that patients often remember more about how their doctor broke bad news than they do about their diagnosis.
“You go into these rooms knowing that you’re going to destroy people’s lives,” Fishel said. Yet she has heard of colleagues who deliver bad news from the doorway of a patient’s hospital room and then quickly back out.
It’s a concern shared by other physicians who have developed a protocol for delivering news that they know will be devastating. “It acknowledges the fact that giving bad news is very hard and doctors aren’t taught those skills,” said Dr. Walter Baile, chief of psychiatry at the MD
Anderson Cancer Center in Houston. terminology at their patients. Baile said it’s also critical to choose a location that’s comfortable for the patient and to pay attention to the patient’s emotions as he receives the information
“The most important thing is to make an empathetic statement, to say something like, ‘I can see that you weren’t expecting bad news,’ or ‘wish’ statements like, ‘I wish there was something I could do.’ That’s very different from saying, ‘There’s nothing I can do,’ because that’s abandonment,” he added.
Fishel relies heavily on the SPIKES Philosophy in a presentation she gives to young doctors and medical students titled, “Giving and Receiving Bad News: Lessons I’ve Learned.”
Fishel learned of SPIKES from a friend — an oncologist using it with her own patients. Fishel developed her talk after a nephew in medical school asked her to speak to his class last summer. Having received her own cancer diagnosis by this time, she decided to develop something more substantive than the usual jargon-filled lecture accompanied by the gory pictures that medical students love.
“I thought a more relevant talk for young, upcoming physicians was bad news,” she said.
Here she parts company with Baile, who said he’s reluctant to give presentations to young medical students who don’t have the experience to put SPIKES into context.
“If you teach it too early in the medical career, before they’ve had patients, it really doesn’t make much sense to them. I think that students can learn it, but whether they retain it is the question,” Baile said.
Jay Bhatt, president of the American Medical Student Association, disagreed. “I don’t think that it’s ever too soon to understand human interactions, human emotions and how that impacts people’s health,” he said.
KNOWN AS SPIKES, which stands for “Setting, Perception, Invitation, Knowledge, Empathy and Strategy/summary.” It emphasizes skills that Baile says are useful for physicians who have to deliver bad news.
As part of the six-step process, Baile says, physicians should take their time when delivering news to ensure that patients understand what is being said. Too many doctors, he says, toss too much medical
This is the protocol developed by oncologists and psychiatrists for delivering bad news to patients:
S — Setting Pick a private location.
P — Perception Find out how the patient views the medical situation.
I — Invitation Ask whether the patient wants to know.
K— Knowledge Warn before dropping bad news.
E — Empathy Respond to the patient’s emotions.
S — Strategy/summary Once they know, include patients in treatment decisions.
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