Dr. Elizabeth (Lissa) McKinley is in the last few months of her life and is receiving hospice care at her home in Cleveland Heights. Lissa's sister Brent McKinley helps her up the stairs after the two spent some time outside writing.- Michael F. McElroy for The New York Times
Doctor Elizabeth (Lissa) McKinley is in the last few months of her life and is receiving hospice care at her home in Cleveland Heights. Lissa rests in a hospital bed set up in the living room while her hospice Nurse June Olson and sister Brent McKinley discuss her medication.- Michael F. McElroy for The New York Times
Doctor Elizabeth (Lissa) McKinley is in the last few months of her life and is receiving hospice care at her home in Cleveland Heights. Lissa's sister Brent McKinley organizes her medication.- Michael F. McElroy for The New York Times
After spending more than three decades as a medical oncologist, Dr. Kenneth Zeitler now works part-time to raise funds for a new Cancer Hospital - even after his own diagnosis. Zeitler receives some physical therapy with personal trainer Gwen Saint Romain before heading to work.- Travis Dove for the New York Times
After spending for more than three decades as a medical oncologist, Dr. Kenneth Zeitler now works part-time to raise funds for a new Cancer Hospital - even after his own diagnosis. Zeitler receives some physical therapy with personal trainer Gwen Saint Romain before heading to work.- Travis Dove for the New York Times
Dr. J. Andrew Billings at his home in Cambridge, Mass.- Gretchen Ertl for The New York Times
Dr. J. Andrew Billings and his wife Dr. Susan Block at their home in Cambridge, Mass.- Gretchen Ertl for The New York Times
How doctors die
This story appears in The New York Times 'Your Money' section on Wednesday, Nov. 20, 2013.
Brave. You hear that word a lot when people are sick. It’s all about the fight, the survival instinct, the courage. But when Dr. Elizabeth D. McKinley’s family and friends talk about bravery, it is not so much about the way Dr. McKinley, a 53-year-old internist from Cleveland, battled breast cancer for 17 years. It is about the courage she has shown in doing something so few of us are able to do: stop fighting.
This spring, after Dr. McKinley’s cancer found its way into her liver and lungs and the tissue surrounding her brain, she was told she had two options.
“You can put chemotherapy directly into your brain, or total brain radiation,” she recalled recently from her home in suburban Cleveland. “I’m looking at these drugs head-on and either one would change me significantly. I didn’t want that.” She also did not want to endure the side effects of radiation.
What Dr. McKinley wanted was time with her husband, a radiologist, and their two college-age children, and another summer to soak her feet in the Atlantic Ocean. But most of all, she wanted “a little more time being me and not being somebody else.” So, she turned down more treatment and began hospice care, the point at which the medical fight to extend life gives way to creating the best quality of life for the time that is left.
Dr. Robert Gilkeson, Dr. McKinley’s husband, remembers his mother-in-law, Alice McKinley, being unable to comprehend her daughter’s decision. “ ‘Isn’t there some treatment we could do here?’ she pleaded with me,” he recalled. “I almost had to bite my tongue, so I didn’t say, ‘Do you have any idea how much disease your daughter has?’ ” Dr. McKinley and her husband were looking at her disease as doctors, who know the limits of medicine; her mother was looking at her daughter’s cancer as a mother, clinging to the promise of medicine as limitless.
When it comes to dying, doctors, of course, are ultimately no different from the rest of us. And their emotional and physical struggles are surely every bit as wrenching. But they have a clear advantage over many of us. They have seen death up close. They understand their choices, and they have access to the best that medicine has to offer.
“You have a lot of knowledge, a lot of awareness of what’s likely to come,” said Dr. J. Andrew Billings from his home in Cambridge, Mass.
Dr. Billings, 68 and semi-retired, is an expert in palliative care, which can include managing pain, emotional support and end-of-life planning. He is also a cancer patient with a life-threatening form of lymphoma. Dr. Billings said that knowledge of what may be ahead can give doctors more control over their quality of life before they die — control that eludes many of us.
Research shows that most Americans do not die well, which is to say they do not die the way they say they want to — at home, surrounded by the people who love them. According to data from Medicare, only a third of patients die this way. More than 50 percent spend their final days in hospitals, often in intensive care units, tethered to machines and feeding tubes, or in nursing homes.
The New Math of Health Care:
The New York Times, in collaboration with American Public Media’s Marketplace, examines the soaring out-of-pocket costs of staying healthy, end-of-life care, and strategies for picking doctors and health plans. Read the whole series.
There is no statistical proof that doctors enjoy a better quality of life before death than the rest of us. But research indicates they are better planners. An often-cited study, published in 2003, of physicians who had been medical students at Johns Hopkins University found that they were more likely than the general public to have created advance directives, or living wills, which lay out specific plans for care if a patient is unable to make decisions. Of the 765 doctors studied, 64 percent had advanced directives, compared with about 47 percent for American adults over 40.
Patients and families often pay a high price for difficult and unscripted deaths, psychologically and economically. The Dartmouth Atlas Project, which gathers and analyzes health care data, found that 17 percent of Medicare’s $550 billion annual budget is spent on patients’ last six months of life.
“We haven’t bent the cost curve on end-of-life care,” said Dr. David C. Goodman, a senior researcher for the project.
The amount spent in the intensive care unit is climbing. Between 2007 and 2010, Medicare spending on patients in the last two years of life jumped 13 percent, to nearly $70,000 per patient.
The evidence is clear, Dr. Goodman said, that things could change if doctors “respect patient preferences and provide fair information about their prognosis and treatment choices.”
Sometimes that can be easier said than done, even for doctors. One day last month, as he sat through the first of several hours of chemotherapy at the Dana-Farber Cancer Institute in Boston, Dr. Billings said he had looked at statistical survival curves for his form of lymphoma.
“There are some dots that are very, very soon, and there are some dots that are a long ways off, and I hope I’m one of those distant dots,” he said.
Dr. Billings knows how important it is to have that information. As a palliative care doctor, he has spent a lifetime helping people plan their final days. Also, he is married to a prominent palliative care doctor, Dr. Susan D. Block.
“As a doctor you know how to ask for things,” he said. But as a patient, Dr. Billings said he had learned how difficult it can be to push for all the information needed. “It’s hard to ask those questions,” he said. “It’s hard to get answers.”
There is a reason for that. In his book “Death Foretold,” Nicholas A. Christakis, a Yale sociologist, writes that few physicians even offer patients a prognosis, and when they do, they do not do a great job. Predictions, he argues, are often overly optimistic, with doctors being accurate just 20 percent of the time.
But without some basic understanding of the road ahead, Dr. Anthony L. Back, a University of Washington professor and palliative care specialist, said even sophisticated patients could end up where they least want to be: the I.C.U. “They haven’t realized the implications of saying: ‘Yeah, I’ll have that one more treatment. Yeah, I’ll have that chemotherapy,’ ” Dr. Back said.
In Raleigh, N.C., Dr. Kenneth D. Zeitler has practiced oncology for 30 years. The son of a doctor and the father of two doctors, he learned 18 years ago that he had a brain tumor, which was removed. When the tumor recurred in 2004, he took the conservative route and decided against an operation — the risk of paralysis was too great. Dr. Zeitler, his wife and their two children mapped out a clear medical path, or so they thought.
Then in June, he woke up with the left half of his body paralyzed, after a low-risk biopsy caused a hemorrhage in his brain. “As a physician myself, when treating patients, I listened to this inner voice,” he said, but now he was mad at himself. “Instead of just saying ‘No, I won’t do this biopsy,’ I didn’t follow my instincts.”
Dr. Zeitler realized after his biopsy that saying no can mean more than turning down a procedure. It can mean dealing with something much harder: his family’s expectations that he will do whatever it takes to live and remain with them.
As transparent as Dr. Zeitler was with his family about his clinical care, he had walled off his deepest fears about losing pleasure in his daily life. He has since regained most physical functions and says he has had another chance to talk to his family. “As much as they’ll cry about me at every bar mitzvah and every wedding, I don’t want to be there if I’m just completely miserable psychologically and physically,” he said. “I’ve seen that. I don’t need that.”
Dr. Joan Teno, an internist and a professor of medicine at Brown University, says that often, even families like the Zeitlers, avoid the difficult conversations they need to have together and with doctors about the emotional side of dying.
“We pay for another day in I.C.U.,” she said. “But we don’t pay for people to understand what their goals and values are. We don’t pay doctors to help patients think about their goals and values and then develop a plan.”
But the end-of-life choices Americans make are slowly shifting. Medicare figures show that fewer people are dying in the hospital — nearly a 10 percent dip in the last decade — and that there has been a modest increase in hospice care. At the same time, palliative care is being embraced on a broad scale, with most large hospitals offering services.
The Affordable Care Act could accelerate those trends. Ezekiel Emanuel, the former White House health policy adviser, has said he believes that new penalties for hospital readmissions under the law could improve end-of-life care, making it more likely “we make the patient’s passage much more comfortable and out of the hospital.”
Culturally there is movement too. For example, deathoverdinner.org, a website to help people hold end-of-life discussions, was started in August. The project’s founder, Michael Hebb, said more than 1,000 dinner parties had been held, including some at nursing homes.
The front door at Dr. McKinley‘s big house was wide open recently. Friends and caregivers came and went. Her hospice bed sat in the living room. Since she stopped treatment, she was spending her time writing, being with her family, gazing at her plants. Dr. McKinley knew she was going to die, and she knew how she wanted it to go.
“It’s not a decision I would change,” Dr. McKinley said. “If you asked me 700 times I wouldn’t change it, because it is the right one for me.”
Dr. McKinley died Nov. 9, at home, where she wanted to be.
Kai Ryssdal: Most Americans don’t die well, which is to say we don’t die the way we say we want—at home, surrounded by the people who love us. According to Medicare, only a third of patients die this way. More than half of us spend our final days in hospitals, often in ICUs tethered to machines and feeding tubes, or in nursing homes. But how about doctors? Do physicians have control over their own end of life care that eludes so many of us? From the Health Desk at WHYY in Philadelphia, Marketplace’s Dan Gorenstein visited with three doctors facing life-threatening illness.
His story begins outside Cleveland in the home of Dr. Elizabeth McKinley, where she is getting hospice.
DG: deep breath….breaths, ok, good….breaths
You hear that word a lot when people are sick.
But when Elizabeth McKinley’s family and friends talk about bravery, it’s not as much about the way McKinley – a 53 year-old internist has battled breast cancer.
It’s about doing what so few of us can; stop fighting.
LISSA: wow, Lissa that sounds good….does it?...That sounds nice and clear…
DG: Last spring, after McKinley’s cancer had found its way into her liver, lungs, and the tissue surrounding her brain, her doctor told her she had two options.
McKinley: “You can put chemotherapy directly into your brain, or total brain radiation.”
Lissa Blood pressure real quick.
McKinley: “I’m looking at these drugs head on and either one would change me significantly. I don’t want that.”
DG: What McKinley wanted was time with her husband--a radiologist-- their two college-aged kids, and another chance to soak her feet in the Atlantic Ocean.
McKinley: I want to have another summer with my family, maybeor a little more time being me and not, not being somebody else.”
DG: So after 17 years, McKinley stopped treatment for her cancer and started weekly hospice visits to be as comfortable as possible for the short time that’s left.
Her mother didn’t understand.
She asked McKinley's husband Chip Gilkeson if there wasn’t something more they could do.
Gilkeson: “and I almost, almost bite my tongue, to say, “Do you have any idea how much disease your daughter has?
DG: McKinley and her husband were looking at her disease as doctors, who know the limits of medicine.
Her mother was looking at her daughter’s cancer like a mother, clinging to the promise of medicine as limitless.
When it comes to dying it’s surely every bit as wrenching for doctors as it is for the rest of us.
But they have a clear advantage; they’ve seen death up close, they have access to the best medicine has to offer and they understand their choices better.
Billings: you have a lot of knowledge, a lot of awareness of what’s likely to come.
DG: That’s Andrew Billings.
DG: For 30 years, as a palliative care doctor he helped his patients manage pain, map out their treatment options and plan end of life care.
Billings 2:34 here we are in the infusion unit.
DG:...he’s the patient with a rare form of lymphoma.
Billings: 2:34 … I am hooked up to an intravenous line which is hooked up to a pump, which is hooked up to me through a port.
DG: Last month I spent time with Billings as he sat through the first of several hours of chemotherapy at Dana Farber in Boston.
Billings: 11:39 we’ve got harp music today it looks like, I’m going to waft up to heaven.
DG: In the six months he’s been diagnosed Billings says being a doctor has helped.
For example, he and his wife Susan Block – also a palliative care doctor – knew just what to do after a round of chemo this summer left him ravaged and exhausted.
Block says they asked for Ritalin, the drug often used for attention deficit disorder.
Block: 8:43 most patients I don’t think would know to ask about could we try some Ritalin to use for this fatigue. And yet I know and Andy knows because of our fields that that’s a really great drug. And that it makes a huge difference in being more part of the living while you’re there.
DG: Being as comfortable as you can is a lesson for everyone to learn says Dr. Diane Meier from the Center to Advance Palliative Care at Mt. Sinai Hospital in New York.
Meier: The people who feel better, who are less anxious, whose pain is controlled they’re not using up all their bodily energy just to get through the day. So I think we are pretty convinced that it will help us live longer as well.
DG: As a doctor, Billings has had a level of control few patients ever get.
But even Billings – whose cancer is in remission - hit the same wall so many other patients do…he doesn’t have a great handle on his prognosis.
Billings: I’ve looked at the survival curves and I don’t know which dot I am. But there are some dots that are very, very soon, and there are some dots that are a long way off and I just hope I’m one of those.
DG: If anyone can coax a prognosis out of his doctor, it’s Billings – with 30 years treating patients at the end of life.
But even he couldn’t.
Billings: It’s hard to ask those questions, it’s hard to get answers.
DG: It turns out doctors don’t like to talk about the end.
Studies show few offer patients a prognosis, and when they do, they often overestimate the time someone has left.
In fact, the better a doctor knows his patient, the rosier the prognosis.
Billings says it’s the doctor’s responsibility to help patients get their bearings.
Billings: I think they need to give a prognosis which can be very simple like, ‘you know you have a very serious illness and I wonder if you’ve thought about it getting worse. In other words you don’t need to go right to ‘you’re a dead ducky. Don’t buy any green bananas.
DG: When physicians don’t layout the road ahead, University of Washington Professor of Medicine Dr. Anthony Back says a patient can end up where they least want to be: the ICU.
Back: “Many of those people have ended up in those places because they haven’t realized the implications of saying “yeah, I’ll have that one more treatment. Yeah I’ll have that chemotherapy.”
DG: Patients and families often pay a high price for these difficult and unscripted deaths, psychologically and economically.
The Dartmouth Atlas Project found nearly 20 percent of Medicare’s $550 billion annual budget is spent on the last six months of life.
Atlas senior researcher David Goodman did the analysis.
Goodman: 19:!0 the evidence is very clear, that if we respect patient preferences most patients will choose less aggressive care and care that costs less.
DG: But what sounds simple can be difficult…even for doctors.
Zeitler: :12 – I’m Ken Zeitler. I’m now 64and I’m a medical oncologist.
DG: Zeitler lives in Raleigh, North Carolina
He is the son of a doctor, the father of two doctors and a cancer specialist.
He was diagnosed 18 years ago with a brain tumor.
Consistently, Zeitler and his family have mapped out a clear medical path.
Then last June, he woke up with the left half of his body paralyzed after a low-risk biopsy caused a hemorrhage.
Zeitler hadn’t fully explained to his family losing control of his body was one of his deepest fears…and he regretted it.
Zeitler: As a physician I did have to listen to this inner voice. In this case you know I was enraged, I hadn’t listened to those. I felt like you know I’d screwed myself.
DG: Zeitler realized afterwards saying “no,” can mean more than turning down a procedure.
It can mean dealing with something much harder, the emotional pull of family who want you with them, no matter what.
Zeitler: quality of life means different things to different people. And you have to decide for yourself, I guess with your family, but ultimately it’s a personal decision.
DG: Over the last decade, there are signs that the end-of-life choices we make are slowly shifting.
Medicare figures show fewer people are dying in the hospital, and there has been a modest increase in hospice care.
And you’ve people like Elizabeth McKinley back in Cleveland – a person who just acknowledges what’s in front of her.
McKinley: People always tell me, you know, you’ve got other options. I don’t feel like I have other options. I think my option is to figure this out and go forward.
DG: Since this spring, friends and caregivers have come and gone, McKinley’s hospice bed right in the living room.
Her daughter calls it meeting death at the front door.
McKinley liked that expression.
McKinley: Yeah, I think, I think allowing death to be at the front door allows us to talk more about life, in reality. Cause I think that’s what we’re talking about.
DG: McKinley’s goal was to find a way to maximize a good life.
In her final days, friends and families say she did.
Elizabeth McKinley died November 9th, at home, where she wanted to be.
I’m Dan Gorenstein for Marketplace.