A conversation everyone should have—and too often don't

Want to reduce cases of doctors desperately trying to save the lives of people on the verge of dying despite them not wanting such aggressive treatment? Stop paying for it.

That's the somewhat radical idea of a Harvard Medical School doctor who is trying to change the way his physician brethren—and their patients—deal with often difficult end-of-life issues.

"Hospital systems should not be paid for medical care that is delivered to patients that is documented that they never wanted," said Dr. Angelo Volandes. "When people get care at the end of their life they just don't want, that's a medical error."

Volandes might have a tough time gaining widespread acceptance for the idea of withholding payments—a least for now. But after watching patients receive treatments that do little beyond delaying the inevitable, he is waging a crusade to get people and their families to have what he calls "The Conversation," a frank discussion about death, and how much or how little effort they want from doctors to keep them alive when they're terminally ill.

Senior with daughter
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Volandes' new book, "The Conversation," lays out what he calls "a revolutionary plan for end-of-life care" that could save seriously ill patients and their families unnecessary physical and emotional pain from the use of extreme lifesaving measures.

"Without this open conversation about death, patients are traumatized needlessly, leaving their families with the emotional scars of witnessing the hyper-medicalized death of their loved ones," Volandes wrote in his book.

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"Fifty years ago, most people died at home surrounded by their loved ones; most deaths today occur in health care institutions where patients are surrounded by strangers. By most accounts, this transformation of death from a natural process occurring at home has been disastrous," he said.

The book's dust jacket ominously notes that, "Two-thirds of Americans die in health care institutions tethered to machines and tubes at bankrupting costs, even though research shows that most prefer to die at home in comfort, surrounded by loved ones."

Tools for taking control

In addition to stories about actual patients in those situation, Volandes' book contains information about tools that people can use to take control over the treatment they receive or don't receive. Those tools include livings wills, which describe what kind of medical care you would want if you're unable to speak for yourself, and health-care proxies, which identify who will speak for you in such cases.

A 2013 study by Pew Research found that 35 percent of all adults reported having "put their wishes for end-of-life decisions into writing, whether in an informal document (such as a letter to a relative) or a formal, legal one (such as a living will or health care directive)."

But that same study found that 57 percent of adults said they would tell their doctors to halt treatment if they "had a disease with no hope of improvement and were suffering a great deal of pain. And 52 percent said "they would ask their doctors to stop treatment if they had an incurable disease and were totally dependent on someone else for their care."

In an interview with CNBC, Volandes said the need to have a conversation and to make decisions about end-of-life treatments "applies to anybody who has to deal with the health-care system, which is essentially all of us."

Normally, he said, "It takes a crisis for people to really wake up to it."

Getting more people to have this conservation could significantly reduce unnecessary health-care costs incurred toward the end of life to the tune of many billions of dollars, he said.

Spending on people in the last year of their lives is dramatically higher than on other patients. About $125 billion, or $1 out of every $4 spent by Medicare, the federal government health coverage program for the elderly, goes toward medical treatment toward the end of beneficiaries' lives.

That big number is particularly striking because only around 5 percent of Medicare beneficiaries die each year

That potential savings would only increase in coming years, said Volandes, citing predictions of a marked spike in the number of Americans with dementia, which would boost costs, as the population ages for his assumption.

In those cases, in the absence of advance planning by an individual and their family, Volandes said, "it's not going to be the patient making these decision, it's the family member."

Tough talk to have

He acknowledged that having a conversation about end-of-life measures such as cardiopulmonary resuscitation, and the consequences of not receiving it, does not come easily to many people.

"I think it's difficult for families because they don't know what might happen" to a loved one in the future, he said.

But waiting to discuss those issues until they actually need to be decided can make things worse.

"I think it's extremely difficult for families, because families are often forced into this position at the worst time," Volandes said. "And I blame doctors."

Volandes doesn't exempt himself from this finger-pointing. Doctors often know the treatment and procedures they are administering to terminally ill patients are ultimately futile, costly and the source of pain and stress.

Dr. David Goodman, a Dartmouth Medical School professor, in 2013 co-authored a study published in the Journal of American Medical Association that found that while there had been an increase in the use of hospice services over the prior decade, there also had been an increase in the use of intensive care units. The study found that while more people were going to hospice, many were going there just for a few days after being in the ICU.

Goodman has cited the case of his colon cancer-stricken sister, who died while undergoing a medical procedure just a day before she was supposed to enter hospice and spend her final days there.

"Poor communication leading to unwanted care is epidemic in many health systems," Goodman said at the time the JAMA report was issued. "The patterns of care observed in this study reflect needlessly painful experiences suffered by many patients, including my sister, and other friends and family members of the research team,"

Early in Volandes' book, he writes about being a young resident and treating a 78-year-old, terminally ill lung cancer patient, a mine worker and immigrant from Ukraine whose condition left him "too confused to have a lucid conversation," and who "lacked family members to guide his decision-making."

"So his medical plan was the default for all patients: Do everything possible to keep him alive," Volandes wrote.

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Volandes in his book writes about what was done to the man, whom he calls Taras, over a 48-hour period that began when Taras stopped breathing, and a "Code Blue" was called by his nurses.

Volandes gave the man CPR, during which "all I could hear and feel were the cracking of his ribs with practically each chest compression," he wrote. Soon afterward he stuck a long needle four times into the sac around Taras' heart in an unsuccessful effort to draw out fluid.

Once Taras was stabilized, Volandes said to an another resident, "I can't believe we just did all that to a man who has one foot in the grave."

The next day, when Volandes saw Taras, "he had a tube or catheter in almost every part of his body," Volandes wrote, and also had had a hole cut into the wall of the sac around his heart so that fluid wouldn't build up.

Over the next two days, Taras' heart stopped three more times and, miraculously, the ICU team had bought him back each time. But ultimately he died 48 hours after the first Code Blue was called.

"Whatever the next new fix is, nature eventually takes her inexorable course," Volandes wrote.

Doctors part of the problem

Volandes, in an interview, said, "I hope people become outraged when they read about some of the stories," which detail other cases of extreme lifesaving measures applied to terminally ill patients.

But Volandes is also hoping that doctors' behaviors change, and that they go out of their way to discuss end-of-life treatments with their patients and their families long before a crisis point is reached.

"When I look at some of these doctors, some of my colleagues who have 10 years out of medical school, they weren't trained to have this conversation," Volandes said. "They were trained to be 'the medical expert.'"

"More often than not, the doctor's not going to bring it up," Volandes said.

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Doctors are uncomfortable discussing the topic, he said. In his book, he writes about himself at times having used medical jargon that obscured the fact that there was no hope of a patient surviving her disease.

During talks he gives on the subject at hospitals around the country, he said, families of patients who received lifesaving treatment even as they were in their last days often weep as they "say how horribly we as a health-care system failed them."

Videos in Hawaii

For Volandes, part of that practice includes his work for the nonprofit group he co-founded, Advance Care Planning Decisions, whose services include a series of videos with the purposes "of educating and improving decision-making for all patients."

Since 2013, the Hawaii Medical Service Association has been operating a program that uses the group's nearly 50 videos at all of that state's hospitals and hospices as well as most of Hawaii's skilled-nursing facilities. The program has led to an increase in the number of patients who fill out advance-care planning documents and who opt for hospice care.

Data provided to CNBC shows that at the Hilo Medical Center in Hawaii, the percentage of seriously ill, "last-stages" patients who filled out a form indicating their medical care wishes was less than 5 percent at the end of 2012, right before the videos were introduced.

When the videos began being used by nurses and social workers while talking to patients about their wishes, the percentage more than doubled in the first quarter of 2013, and later grew to as high as nearly 45 percent of all such patients by the middle of 2014.

Similarly, just over 5 percent of last-stages patients were referred to hospice care in the time period right before the videos started being used. There was a significant increase in the number of such patients going to hospice after the videos were introduced—by mid-2014 about 22 percent of such patients received a hospice referral.