The memory is seared in Dr. Richard Payne's mind. Formerly a neurologist and palliative and pain specialist at Memorial Sloan-Kettering Cancer Center in New York City, Payne was treating a middle-aged man, a one-time circus clown, for spinal chordoma, an extremely painful cancer. Payne knew his patient's chances of recovery were slim to none, despite being aggressively treated with surgery, radiation and chemotherapy.
Yet the patient, who never lost his sense of humor, would not accept the fact that he was going to die. He demanded expensive treatments and experimental drugs even though Payne told him there was virtually no chance of surviving. As the tumors enlarged and burst out of the skin of the man's back in painful wounds that became infected and putrid, the circus clown kept demanding maximum care—a futile, yet extremely costly decision.
"He retained his optimism that we would pull something out of our magic bags," recalls Payne , who is now a bioethicist at Duke University. "It was terribly frustrating, because we had nothing to offer him that was going to save him."
Payne confides that he was sympathetic to the man and his condition. But he also was emotionally torn by the reality of his role—of trying to guide a man into the reality of death who wanted to be saved at all costs.
Richard Payne's dilemma is shared by doctors and nurses every day in the United States as society copes with a modern conundrum that no one expected—the wondrous technologies that have boosted the average lifespan by nearly a decade since 1960, and have improved the quality of life for millions of people, can also be painful and unnecessary at the end of life.
This runs counter to a society that believes that bodies, like cars and other machinery, can be fixed—which is often true. Over the past several years medicine has been able to replace vital organs, target cancers with smart bomb pills, develop prosthetic limbs that sometimes rival the original parts, and develop predictive and preventive interventions based on an individual's genetic code.
This technological bounty also can keep dying people alive beyond any hope of recovery and for regaining the special human qualities that define life. These qualities are hard to define, and differ according to the person, but they tend to include attributes such as the use of hearing, sight and other senses; mobility; breathing on one's own; an ability to read and learn, and to interact in a meaningful way with family and friends; and a certain baseline of mental and physical acuity. Quality of life at the end of life is what's at stake in the health care debate.
Call it a mid-death crisis.
The Growing Cost of Dying
"We have the capacity to do so much with technology, but we can't figure out what to do and what not to do with it," says Harvard economist David Cutler, talking about very ill patients. The gap between mid-death and the capacity of technology to keep us alive artificially also has become increasingly expensive as America spends hundreds of billions of dollars a year to take care of the hopelessly ill. The last year of life alone cost Medicare $120 billion in 2009—more than the budgets of the U.S. Departments of Education and Homeland Security combined. This number is expected to double within a decade.
Much of this money is spent on care that patients don't want, or need. Indeed, the majority of people say that they would prefer to die at home with their loved ones. Yet 75 percent die in hospitals or nursing homes, with one in five hooked up to machines and tubes in intensive care units.
During the last six months of life, patients in some major medical centers spend on average more than 10 percent of their final time in hospital beds, and visit physicians over 50 times. Per capita, Medicare pays $50,000 per patient in the U.S. for the last year of life.
By comparison, Britain—which rations health care—spends only $50,000 per person for all care after age 65. Americans spend over $150,000 per capita for total care after age 65.
"To die well is the height of wisdom of life."
-- Soren Kierkegaard (1813-1855)
This outpouring of national wealth might be okay if we got substantially better results for our money than the British and people in other industrialized countries. But we don't. For life expectancy, the U.S. ranks only 23rd out of 27 for OECD (Organization for Economic Co-operation and Development) countries, which includes the U.S., most of Europe, Japan, Korea, Turkey, Australia, New Zealand and Canada.
Mortality rates in the U.S. for some areas, such as strokes and cancer, rank among the best, according to OECD figures – meaning fewer deaths. The U.S. ranks toward the bottom in mortality rates for diabetes, however, and 26th, second to the last, for the nation's infant mortality rate.
Japan beats the U.S. in almost every major category of measuring health care services and outcomes—life expectancy, mortality rates for most major diseases, and access to physicians (13.6 visits per capita per year in Japan compared to four visits in the U.S.)—all for about one-third the cost per citizen.
Something to Talk About
Last spring, it looked as if the U.S. might have a frank national discussion about how we die, and what we are getting for the lavish deployment of our national treasure on end-of-life care. In April 2009, President Obama told The New York Times that Americans need to have a "very difficult democratic conversation" about end-of-life care.
Topics that might have been included in that discussion range from a need to more aggressively educate the public about living wills and other end-of-life options; expand hospice and palliative care facilities; reform criminal and civil malpractice laws; and identify reasons for cost disparities among comparable medical centers for comparable care.
Then came the Tea Party summer of discontent, the suggestion that government would create "death panels," and Sen. Charles Grassley, R-Iowa, the ranking Republican on the Senate Finance Committee, accusing President Obama of wanting to "pull the plug on grandma." This chilled whatever good will had existed among lawmakers in Washington for discussing one of the core drivers of health care costs. "Nobody wants to talk about it," said Sen. Jay Rockefeller, D-W.Va., at the time to a reporter for The Fiscal Times. "They don't want to be called granny killers. It's so absurd."
The conversation still needs to happen—and quickly—as the nation braces for the tsunami of baby boomers that beginning in 2011 will reach age 65. By 2030, they will swell the ranks of seniors from the current 13 percent of our population to nearly 20 percent.
The Technology Factor
Caring for the dying in the age of technological medicine has always been expensive, with the percentage of Medicare spent on end-of-life care holding steady at about one-quarter of its budget since the 1970s. Yet the actual dollar amount has grown fourteenfold since then, when treatments, hospital stays, and other care delivered in the last year of life cost $3,600 per person (adjusted for inflation), compared to the $50,000 figure today.
The bulk of the additional $44,400 has been spent on deploying the raft of new technologies and discoveries made since 1970. Other contributing factors include administrative costs that are over three times that of Canada and most European countries , and financial incentives that reward physicians and hospitals for using more, not fewer gadgets, tests, drugs and procedures. Doctors in the U.S. are paid fees for each service they order, and most medical centers are paid according to categories of care—the more categories, the more money is made.
Another major undercurrent has been a potent attitude among Americans that disease, and possibly even death, can be conquered. For baby boomers in particular, there is a powerful sense that they can preserve their youth and vitality. For most of the last century we've lived through the age of techno-heroic medicine, when the imperative was to deploy everything we've got to fix a person when something goes wrong. This paradigm continues today as headlines trumpet the latest life science breakthroughs and Dr. House continues a long tradition of physician-warriors conquering disease on television.
A Better Way to Die
For end-of-life care, however, attitudes are beginning to shift as a strong grass-roots movement is advocating an alternative to high-tech with the rise of palliative and hospice care, where only symptoms are treated, and the patient is kept comfortable. "We know how people die, the glide paths, but we haven't applied this knowledge very well," says Dartmouth gerontologist Dennis McCullough, who has worked with the old and dying, and their families, for over 30 years and recently wrote the book "My Mother, Your Mother: Embracing "slow medicine," the compassionate approach to caring for your aging loved ones."
Nearly every major medical center in the U.S. now offers hospice care, though most patients in hospice end up staying there for less than a week before they die. Even so, Duke health care analyst Donald Taylor says that hospice care on average shaves off $2,300 in end-of-life costs per patient . Another study at the Mount Sinai School of Medicine saw savings of up to $5,000 per patient for those who died in the hospital using palliative care rather than aggressive care.
Political preferences aside, almost all accept the hospice approach as long as the choice comes from the patient and the family, and not from the government. "I'm all for palliative care, I'm against hastening care. It should be an individual choice," says Bobby Schindler, a Tea Party activist and brother of Terri Schiavo, who in 1990 suffered severe brain damage that left her in a persistent vegetative state, according to her doctor. This led to a bitter legal and political battle when her husband wanted to remove her feeding tubes against the wishes of Schindler and his family.
Yet old ways die hard, says bioethicist Daniel Callahan , author of "Taming the Beloved Beast: How medical costs are destroying our health care system." "We need to change some fundamental values, to realize there are limits to technology."
The question of who gets to play God with our health care is a particularly difficult subject for Americans. Unlike Europeans and to some extent Canadians, Americans are not used to being told "no." Many of us have a strong faith in science and technology to solve problems, and have a strong distrust of the government making decisions and rationing care. We also have a powerful health care lobby that will fight any efforts to substantially reduce their revenues.
"Less is more heroic," says McCullough. "You finally have to face your end, and you should be in human hands for this. We have gone too far to the other end of the spectrum, to high tech care; we need to rebalance this."
Internist Richard Payne agrees, recalling his patient, the circus clown. "In my view he had no quality of life and his friends and family had a hard time visiting him because of the smell," Payne says. "We tried to get him into a hospice program, to get him home, but he wouldn't go. We were obligated to treat him if he asked for it, but here he was in a hospital isolated from a family that loved him—which made things worse for him and for those of us caring for him. The day before he died he told me that maybe these last few months weren't worth it. I felt so horrible for him. It is something I will never forget."
As this five-part series progresses, the idea of an American-style solution to the issues of cost and dignity will be explored, with a starting point being the enormous gap between what people want—to die with dignity with their families, preferably at home—and what actually happens. The Fiscal Times will offer a detailed examination of the death dilemma in America: its causes; the politics; how other cultures and countries treat death; and solutions. We invite you to participate in a discussion that has yet to truly happen in our nation about how we die, and how we want to die in the 21st century.
Click here for part two of this five-part series.
David Ewing Duncan’s most recent book is "Experimental Man: What one man’s body reveals about his future, your health, and our toxic world."
Click here for part two of this five-part series.
Click here for part three of this five-part series.
Click here for part four of this five-part series.
Click here for part five of this five-part series.