Doctors' Secret for How to Die Right
This story has been edited from its original publication, you can read the full story here.
Dr. Ken Murray wrote an essay for the web-only magazine ZÃ³calo Public Square, thinking he’d be lucky to attract a few dozen readers and generate an online comment or two. Instead, the physician—a UC Davis medical-school graduate who taught family medicine at the University of Southern California—drew an avalanche of responses. In fact, what he wrote put him center stage in a swirling debate about life, death and doctors.
What did he reveal that was so groundbreaking?
He claimed that a vast majority of physicians make dramatically different end-of-life choices than the rest of us. Put simply, most doctors choose comfort and calm instead of aggressive interventions or treatments, he said. Another way to look at it is that doctors routinely order procedures for patients near the end of life that they would not choose for themselves.
What do doctors know that the rest of us don’t?
According to Murray, physicians have seen the limitations of modern medicine up close and know that attempts to prolong a life can often lead to a protracted, heartbreaking death.
Murray’s 2011 “How Doctors Die” was translated into multiple languages and written about in The New York Times, The Wall Street Journal, The Washington Post and The Sacramento Bee. Thousands of people commented on it via the scores of newspapers and blogs that reprinted it. Readers told of “near-dead relatives being assaulted with toxic drugs,” said Murray, being offered “painful procedures for no good reason.” Among the responses were hundreds of anecdotes from physicians and health-care professionals that backed Murray’s thesis.
“Most of the stories were heart-wrenching,” he said.
Data that proves the divide isn’t hard to find. Murray cites the Johns Hopkins Precursors Study, one of the longest longitudinal inquiries into aging in the world, which contains a running medical record of health statistics on a group of about 750 doctors, who were members of the Johns Hopkins University School of Medicine in Baltimore between 1948 and 1964. Through the years, the study has helped medical research correlate, for example, high blood cholesterol with heart attacks. But 15 years ago—with its participants in their 60s, 70s and 80s—the researchers began asking about end-of-life choices.
Dr. Joseph Gallo, director of the Precursors Study, was happy to explain how the data has continually found that doctors—by a vast majority—make different choices when faced with dire diagnoses. Physicians who choose the least procedures also tend to have advance directives, an important bit of paperwork that allows patients to choose a health-care proxy and determine in advance what interventions they do or don’t want if they experience a decline in health.
In one scenario where the study group was asked what their wishes would be if they had an irreversible brain disease that left them unable to recognize people or speak, “most people would want everything,” said Gallo, while about 90 percent of doctors “would say no” to CPR, a mechanical ventilator (breathing machine), and kidney dialysis. About 80 percent of the doctors would also say no to major surgery or a feeding tube, he said.
“It seems the more familiar you are with interventions, the less you want,” Gallo said point-blank.
Welcome to “the gap.”
Murray believes blame for the breach can be split three ways between bad physician-patient communication, unrealistic expectations on the part of patients, and their families and a health-care system that encourages excessive treatment. (Note: A quarter of all Medicare spending occurs in the last year of life.)
‘Don't tube me'
When you consider the large number of deaths Sutter Health’s Dr. James McGregor has witnessed in his decades as a Sacramento-area specialist in palliative care and hospice, it is poignant to see him almost overtaken with emotion while telling the story of Ella.
An elderly woman diagnosed with a terminal illness, Ella (not her real name) had strong feelings about not having any medical interventions as she neared her life’s end. She’d filled out her paperwork to this effect and made it official, with her husband serving as her health-care agent in the event that she became unable to make her own decisions. Soon came the inescapable point when Ella, stretched out on a hospital bed and near the end of life, began having difficulty breathing. One of her many doctors said to the husband, “She’s struggling so much. Don’t you want her on a respirator?” Thinking the doctor knew best, the husband gave his consent, and Ella was hooked up to a breathing machine.
That one moment’s choice turned into seven long days of regret.
Despite her wishes, Ella remained marginally alive in the intensive care unit with “tubes everywhere” and a machine breathing for her throughout the week. According to McGregor, the husband then had to take responsibility to withdraw care. “He was heartbroken,” said McGregor. “He felt he had betrayed his wife during her last week of life. … You could see such pain.”
McGregor, an expert in hospice care (which provides terminally ill patients with comfort rather than aggressive treatments) and palliative medicine (with its focus on relieving and preventing suffering), said Ella’s experience was probably more common than most people know.
“I’ve seen patients die in the ICU with every line going, everything, and the family can’t even get close to them.”
Indeed, though most people want to pass away at home surrounded by loved ones, 70 percent die in a hospital, nursing home or long-term-care facilities after a long struggle with advanced cancer, heart failure, incurable disease or the multiple incapacities of old age.
When asked about the gap and why doctors don’t tend to find themselves hooked to respirators in ICUs at the end of their lives in the manner of Ella, McGregor was somber.
“Often the question isn’t framed well,” said McGregor, as in, “’We have two options here: We can go full-court press, or we can aggressively manage your symptoms and keep you comfortable. What would be quality of life for you?’”
Physicians, he said, tend to choose option No. 2, because they’ve seen what they’ve seen, and “they know one intervention can start a whole cascade.”
Dr. Kevin Ryan, a retired physician and a self-published author, puts it a different way: “Doctors have seen [death and dying] from every vantage point except it personally happening to them.
“When you’re close to the fire, you know what it is to get burned.”
Medicine and hospitals exists to fight disease and death, goes the thinking, so if a patient dies, the doctor has failed.
McGregor remembered a clinical-skills class he’d taken in medical school that imparted a first-person list of steps a physician should take that concluded with the words “if the patient dies, I failed.”
“We’re supposed to do things, we’re supposed to fix things,” said McGregor. “Physicians can feel powerless if they can’t offer something, and it’s difficult for them to talk about the options that are not the aggressive ’making you healthy’ options. … A physician can feel he’s failed a patient when he says, ’Well, you can go to hospice.’”
Indeed, a report published last year in the New England Journal of Medicine found that 69 percent of lung-cancer patients and 81 percent of colorectal-cancer patients did not report understanding from their doctor that chemotherapy was not at all likely to cure their cancer.
But it runs two ways, said McGregor.
The patient or the family can often come in with vastly unrealistic expectations, sometimes reinforced by popular culture. Many see CPR, for example, as a sure-bet lifesaver, but in truth, it is rarely effective. “There’s a popular misperception that medicine can fix everything,” he said. “And there’s also a sense of entitlement sometimes—’You should give me everything.’”
Sadly, another reason physicians sometimes “do everything” with terribly ill patients is fear of malpractice lawsuits.
“I believe it is a factor,” said McGregor. The other doctors interviewed agreed. “Sometimes, [physicians] just say, ’OK, we’ll give you everything,’ even though we know it’s not going to help” as a way of not becoming entangled in a legal action from a family member who thought more procedures were merited, he said.
As for his own end-of-life wishes, if faced with a terminal illness, his wish is to die at home without interventions and with the assistance of hospice.
“I joke that I have DNR, DNAR and AND tattooed on my chest,” said McGregor (do not resuscitate, do not attempt resuscitation, allow natural death).
“Just don’t tube me,” he clarified.
‘No way are they doing that to me'
Dr. Michael GuntherMaher, the medical director for the Sacramento and Roseville Kaiser tells the story of Sophie.
An 88-year-old African-American woman, Sophie (not her real name) checked into Kaiser a few months back with a history of rapid weight loss and an infection called sepsis, said GuntherMaher. “We did some tests and found she was anemic. We scanned her abdomen … and we found a mass. It was very clear she had cancer,” he said.
Initially, Sophie said she wanted the doctors to do everything possible to save her life, said GuntherMaher. At the family’s strong urging, the hospital proceeded to pull out all the stops with interventions and drugs. “And this woman just slowly died in the ICU with a tube down her throat,” he said. “The family finally said, ’Take her off the machine.’ It was a very difficult and protracted ending to her life when there was no reasonable hope any of it would work.”
GuntherMaher, who had been asked to consult on Sophie’s case in his role as a palliative specialist, reflected that the woman had given up the chance to return to Oakland to die peacefully in her own surroundings, “around friends and family who wanted so much to visit her, to say goodbye. … That opportunity was completely lost,” he said.
“I have a lot of stories like this,” he said. “The hospital is full of them.”
GuntherMaher views Sophie’s case as an example of what he refers to as the chaos that accompanies many end-of-life scenarios.
“A lot of life changes go on in the later years, and families are ill-prepared,” he said. “There’s illness. People are in and out of hospitals or nursing homes. They’re in these places, even though they used to think, ’I never wanted it to be like that.’ But there they are. And it’s chaotic.”
It was a desire to help make order out of such end-of-life turmoil that led GuntherMaher on the path to his current post at Kaiser.
“I think most people … what they have is fear,” he said. “They’re afraid. They’re confronted. There’s unfinished business. They can’t accept that things will come to an end this way because they’re so not ready.”
This state of mind, he said, often lays the ground for patients or their families to go for whatever procedures are offered, however aggressive.
GuntherMaher believes patients should be able to choose for themselves whether or not to undergo treatments near the end of life. “I’m all for people choosing,” he said, “as long as it’s informed.”
Asked why doctors die different, as in Murray’s thesis, GuntherMaher responded, “Doctors are different.”
“As a group, we tend to be on the end of the spectrum where you find capable, intelligent people. So, if you take [such] people and expose them to these complexities and these difficulties over and over again, they’re going to take that and process it.
“The other thing we [doctors] are able to do is reconcile the physiology issues, the biology failing, with the more difficult slippery human issues. What is a life? What is death? What’s it all about? We’re confronted with that on virtually a daily basis. Nobody else in our society is, except maybe pastors.”
GuntherMaher said the physicians he hangs out with are in the hospital daily and “most of them who have been vocal about [interventions near the end of life] have basically said, ’No way are they doing that to me.’”
It was no surprise to find that GuntherMaher’s end-of-life choices echo that of other doctors in the Johns Hopkins’ study. In fact, he’d gathered his three 20-something children just a few months ago for a meeting about his wishes. His son and daughter were with there in person and “We got my daughter and son-in-law on FaceTime on the iPad,” he said. GuntherMaher pulled out his advance directive and showed his children a POLST form. Physician Orders for Life-Sustaining Treatment forms state what kind of medical treatment seriously ill patients—usually already in the hospital or a nursing facility—want for themselves.
“I think it provided a good opportunity for us to be a family and talk about something meaningful together and practice compassionate listening and thoughtful speaking with one another,” he said, “and consider for a moment that time is precious.”
Among other things, GuntherMaher told them, “I don’t want to be resuscitated if my heart stops. I don’t want to be on a mechanical ventilator. When my time comes, I want to die in my own home.”
‘Medicine can't fix everything'
Dr. Jeffrey Yee stands before his students—gray button-down shirt, khakis and a pocket pager—with all the friendly charisma of a social-science professor. But he’s a doctor who takes time from his paid duties as a general internist to teach elderly and chronically ill patents about advanced directives and POLST forms. Yee’s audience in early September consisted of 14 elderly patients—many of whom looked to be struggling with chronic disease or cancer.
Yee, who testified in 1997 on behalf of POLST before the state Legislature, led his students through a PowerPoint presentation on advance directives and the importance of naming a health-care agent or proxy. He and a nurse practitioner even performed a skit where the two played siblings with different interpretations of what a doctor recommended should be done with a mom on life support.
“We try to get people to consider the issues beforehand, to have conversations,” Yee said before the class. “We try to get people to experience the tensions and trade-offs they very well may face in the future.”
Launched six months ago, Yee’s group-education project is one of many approaches being taken across the country to better inform people about their options. Modeled after a much-lauded program at Gundersen Lutheran Medical Center in Lacrosse, Wis., which proactively encourages hospitalgoers to fill out advance directives, Yee’s patients are invited to attend the two free classes by their doctor if their medical record triggers them as age 60 with a chronic illness (diabetes, heart failure, lung problems) or if they are simply 70 or older.
Yee doesn’t use “end-of-life” terminology or the word “death” in his seminars. Nor does he discuss specific procedures and their possible outcomes. “When you reduce it to a conversation about ’this procedure succeeds this amount of time,’ that doesn’t really give you the big picture,” he said. “What number should it be that you say, ’This is a low chance of success’?” he asked. If you’re 95, he said, you might answer that question differently than if you are 30 and have three kids.
Interestingly, Yee—the youngest doctor interviewed—was the only local physician who didn’t immediately say he would decline interventions if he himself was faced with a terminal illness. “It depends on the situation,” he said. “I don’t know that I could specify that so specifically now.”
Another program that could result in narrowing the gap between physicians and everybody else on end-of-life choices is dubbed ROYL, short for The Rest of Your Life.
Dr. Philip Lisagor, a retired cardiothoracic surgeon and chief medical officer for ROYL in Reno, Nev., had a realization toward the end of his career: “It struck me that nobody was talking to patients with serious illnesses about what was happening,” he said.
“A specialist would come in with some high-tech procedure and send them back to the referring doctor. Something else would happen to the patient, and they’d be off for another procedure. Doctors weren’t talking to each other or to their patients.
“A game is played,” he said.
Lisagor noted that the profit motive should not be overlooked when discussing why the gap exists, and so many doctors often encourage interventions they themselves wouldn’t choose. “The health-care industry makes a huge amount of money on end-of-life care,” said Lisagor. Indeed, about 27 percent of Medicare’s annual $327 billion budget—$88 billion—now goes to care for patients in their final year of life.
“Everyone in the system profits from more procedures,” said Lisagor, “including doctors, hospitals, pharmaceutical companies, people down the line in diagnostic centers and etc. … It’s an enormous issue.”
Since retiring, Lisagor and colleagues set up the ROYL program, an online organizational system that walks people through “all the documents and information necessary for you to plan your life and health aging.” ROYL (www.theroyl.com) encompasses financial, emotional and physical issues in addition to medical and end-of-life planning. He hopes to beta test at a skilled nursing facility in the Reno area soon and, eventually, take the program out to the country.
Some believe pilot programs like Yee and Lisagor’s will fasten together with other sweeping trends—the growth in hospital-based palliative-care programs, increased use of POLST forms, an uptick in the number of people dying in hospice care—and create a seismic shift in how America, and not just its doctors, faces death.
Nudging along that transformation could be the huge numbers of baby boomers who have begun turning 65 (about 8,000 per day) and, thus, looking at their final chapter of life. In the social realm, members of this inimitable generation may set their sights on experiencing better deaths than the often-troubling ones they have been seeing their parents undergo. On the economic front, the boomers present a major financial incentive for addressing the issue, since Medicare costs for this single generation are projected to skyrocket if end-of-life scenarios remain status quo.
Though a proposal to reimburse doctors for talking about end-of-life choices with patients was ultimately left out of the Affordable Care Act (thanks to Sarah Palin’s 2009 charge that such conversations amounted to “death panels” for “grandma”) many, like Ken Murray, think that controversy actually got people finally talking and thinking about end-of-life matters.
“There’s a cultural change taking place across the country,” said Murray, the doctor with the oft-reprinted essay. “The taboo is unraveling. People want to talk about this. … It’ll take time, but I believe it’s happening.”
The physicians interviewed for this story also tended to agree that things were improving in the end-of-life care realm.
“I do think it’s getting better,” said McGregor. “I think what people need to understand is that there is the possibility of having a comfortable death, of mending relationships and dying surrounded by loved ones. People need to understand this as a real and viable option.
“And they need to understand that medicine can’t fix everything.”
Will better communication, reasonable expectations and a hoped-for future health-care system where financial incentives no longer skew toward senseless interventions help narrow Murray’s gap and increase the possibility for more “good” deaths?
Naturally, the doctors hope so.
But perhaps Dr. GuntherMaher’s patient Clarice, can best give testament.
In her early 60s, Clarice (not her real name) was diagnosed in February with kidney cancer. “She was not curable,” he said. After doing some tests, “We told her, ’This is not looking good. You have advanced cancer, and you’re too weak to undergo chemotherapy, which means you don’t have any reasonable options for beating this.’”
Clarice appreciated the candor, said GuntherMaher.
“She has a spiritual belief system. She has a healthy marriage, healthy relationships with her kids, and she said, ’I’ll be OK with this. I want to go home and be with my family and let them take care of me. I can still enjoy some time with them.’”
She left the hospital and went into hospice, said the doctor. “I spoke to her daughter yesterday, and they’re flying her sister home from Guam. … The family is coming together. The children are saying, ’I’m dropping everything to be with Mom.’ There’s a time in life when you just do that.”
In other words, Clarice accepted her fate and prepared for her own good death. She knew what she wanted. She made her choices. She embraced a truth about dying that most physicians already know all too well: Often doing less allows so much more.