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Bioethicist Arthur Caplan is a big man with a gravelly voice and a reputation for blunt characterizations about health care conundrums. Speaking on the phone from his office at the University of Pennsylvania, he recently posed a question: "What would you do if your mother needed an expensive, painful operation that had only a one in a million chance of saving her?" Without pausing, he opined, "Most Americans would say ‘do it.' In this country, we are all about hope. We like miracles, and we don't like to leave people behind. These are strong cultural trends."
Aiming for miracles, however, can lead to debilitating therapies that continue after there is no hope; to dying patients being hooked up to feeding tubes and to ventilators; and to agonizing surgeries that cannot save them. "This is no way to die, with every technology imaginable being deployed, and a patient in pain in their finals days or weeks," says Laurie Jacobs , a gerontologist at Montefiore Medical Center in New York.
A Mid-Death Crisis
The idea of foregoing heroic efforts and new technologies to save dying patients is anathema for most Americans. It contradicts a core national conviction that innovation coupled with a can-do attitude can accomplish virtually anything. More importantly, heroic treatments sometimes work. One example: a well-known media figure being treated by University of Southern California oncologist David Agus was given a few months to live with advanced cancer and was receiving hospice care. Opting to try an experimental drug in early stage clinical trials, the patient made a miraculous recovery. Two years later he is still alive with a good quality of life. "He is working and with his children," said Agus.
Medical breakthroughs have led to a near doubling of human lifespan over the last century, from 47 years old in 1900 to nearly 80 years old today. Infectious diseases and bacterial infections that used to kill millions of people each year have been tamed, though not eliminated. Some cancers can now be treated or eradicated by detecting them early with scanners and other technologies, and surgeons can repair or even replace hearts, livers, eyes and other organs with remarkable precision and success.
Extreme technophiles believe that science will one day discover the fountain of youth and cheat death altogether. Inventor and futurist Ray Kurzweil believes that our consciousness will be downloaded into computers, giving us a kind of cyber-immortality. If that idea seems like science fiction, Harvard scientist David Sinclair co-founded a company called Sirtris (now part of GlaxoSmithKline) in Cambridge, Massachusetts that is testing a pill in FDA-sanctioned trials that may slow aging and increase lifespan. (The pill is a souped-up version of resveratrol, a natural substance in red wine that has shown some evidence of increasing the lifespan of mice and other animals) "Aging is a disease like any other," insists Sinclair. "It can be treated, if not cured."
Investing in Health
The health care industry now employs 14.3 million people, more than labor in manufacturing, and twice as many as the combined work forces in computing, mathematics, and engineering. Even in a recession with unemployment pushing 10 percent, jobs in the health sector are rising.
Health care in America will cost nearly $2.7 trillion this year—$9,000 per person—a $200 billion increase over last year. $763 billion of this is for Medicare and Medicaid alone, which is over eight times the federal spending for education. Medicare and Medicaid costs have now squeezed out Social Security and defense as the number one expenditure in the federal budget, consuming 21 percent of President Obama's 2011 suggested outlay of $3.5 trillion.
This extraordinary effort—and investment—to keep us alive and well may be one of the chief attributes that American civilization is remembered for, like the ancient Greeks are remembered for democracy and the Parthenon, and the ancient Chinese for the inventions of printing and gunpowder, and the Great Wall.
The entire juggernaut is being imperiled, however, by two realities that Americans do not want to face: one philosophical and one fiscal.
The Can-do v. Cost Conundrum
The first is admitting the inevitability that each of us will die, despite the wonders of technology (unless Kurzweil gets his way). While this is obvious, few of us think about mortality until grave illness or injury strikes, and as a culture we rightly celebrate dazzling discoveries as if they will one day conquer our imperfections, including aging and death. "The United States was founded on the ideal of the perfectability of mankind," says Duke health policy analyst Donald Taylor, "and that has served us well as a nation in most cases."
One way to look at the American health care experience is as an experiment to see how far a society can go towards making people if not perfect, then at least as healthy as possible, in spite of the sometimes self-destructive behaviors that undermine good health.
Which brings up the second conundrum—that this experiment has been conducted at an extraordinary cost given the increasingly marginal benefits in terms of outcomes and quality of life as death approaches.
For example, in the 1940s, the proliferation of low cost antibiotics such as penicillin saved millions of lives and transformed society. In the 2000s the creation of smart drugs such as Avastin—which acts in a novel way to choke off the blood supply to cancerous tumors—extends the lifespan of some cancer patients for only two months at a cost of about $55,000 for a year. Still, oncologists say that it improves a patient's quality of life more than other drugs.
As Americans our inclination is to give Avastin to everyone that it might help – an attitude that fits into our heroic-techno-medicine ethos, but also has contributed to the U.S. spending two to three times as much per capita as Britain, Canada, Japan and most other industrialized countries in the Organization of Economic Cooperation.
This might be palatable if this outlay offered substantial medical outcomes in the U.S. As reported in Part One of this series Part One of this series, for some illnesses, such as cancer and stroke, mortality rates in the U.S. are better, though not dramatically so, while we rank near the bottom for diabetes and infant mortality. Life expectancy in the U.S. also comes out near the bottom compared to other members of the OECD—ranking 23 out of 27.
Outcomes in the U.S. are impacted by large immigrant populations and by a sizable group of people who lack health insurance, both of which lead to higher mortality rates and a lower life expectancy. And some European countries don't count all of their sizable populations of "guest workers," who in general tend to have lower survivability rates than the general population. Still, these numbers make it hard to argue, as some do, that by spending substantially more on health care the U.S. has achieved significantly better results.
The Dartmouth Bombshell
In 2008, researchers at Dartmouth Medical School released a study offering one explanation for this quality gap. Using the costs of end-of-life care for Medicare as an example, they discovered that substantial disparities exist among hospitals in different regions of the U.S. For instance, among the top hospital in the U.S., end-of-life costs at the UCLA Medical Center in Los Angeles average $93,842 per capita, while those at the Mayo Clinic in Rochester, Minnesota cost only $53,432.
These findings prompted Peter Orszag, director of the Congressional Budget Office, to tell the New York Times: "How can the best medical care in the world cost twice as much as the best medical care in the world?"
The researchers conclude that more is not necessarily better. "We have found that having more beds, machines and doctors increases the volume and cost of care without any benefit to the patient," says pediatrician and Dartmouth Atlas of Health Care co-investigator David Goodman. "If facilities are built, they are used, whether or not they improve care."
Some economists blame this on the fee-for-service system that pays doctors and hospitals for each procedure and test they order or perform. This adds an incentive for health care providers to pile it on, whether to make more money, amortize the costs of new machines and technologies, or to satisfy the requests and expectations of patients. "Sometimes patients get endless amounts of testing or treatments that they don't need," says Harvard economist David Cutler. "They end up with supply or fee-driven care. We could spend a lot less and get the same outcomes."
Hospitals that do not use fee for service, such as Mayo and the Cleveland Clinic, appear to order fewer tests and procedures at the end of life without impacting outcomes or the quality of care, according to the Dartmouth researchers. Mayo keeps patients in the last six months of life in the hospital 35 percent fewer days than at the University of California at Los Angeles, and patients at Mayo see doctors less than half the number of times than at UCLA. Some experts contend that the U.S. could save $700 billion a year if hospitals like UCLA acted more like Mayo.
"We are on salary, without bonuses," says Marc Harrison, Chief Medical Operations Officer at the Cleveland Clinic, which spent slightly more than Mayo on the last two years of life, with equally good outcomes. "We are not paid fee for service. Maybe if I am paid fee for service in the back of my mind I know I get extra pay for helping people more."
A fear of lawsuits also contributes to doctors and hospitals spending more money. "Medical liability causes physicians to over-order and to over-do to avoid lawsuits," says geriatrician Laurie Jacobs of New York's Montefiore Medical Center. "Many times the physician has no prior relationship with the patient, so there is a trust issue. Hospitals have liability issues, too." Tort reform has been a rallying cry for doctors for years as the cost of malpractice insurance increases in direct proportion to the costs of malpractice lawsuits.
More May be Better
Last year, UCLA defended its high-intensive—and more costly—brand of medical care by insisting that the Dartmouth study did not factor in the large population of the poor and unusually large population of very sick patients that come to their facility as a last resort. Dartmouth also reported only deaths, said officials from UCLA, and did not take into account those who survived.
Citing a studyby the Journal of the American Heart Association that tracked patients and spending in six California hospitals, including UCLA, researchers found that the differences in cost of care for heart failure was less than suggested in the Dartmouth study. The six-hospital study also concluded that for heart failure patients, the facilities that spent the most money seemed to save the most lives—a sharp contradiction to the Dartmouth study. The hospitals that used more health care resources six months after the patients first arrived for care had one-third fewer deaths than the other hospitals in the study. (Individual hospitals were not identified).
"Sometimes more medical care is better," acknowledged Dartmouth's Elliott Fisher, a lead investigator at Dartmouth, speaking to the New York Times, "but the question is when." He admitted that the California study did a better job of identifying patients who would benefit from more intensive care.
Finding the right balance between too much and too little care is excruciating and highly personal for physicians, patients and families—which is one reason that we don't talk about this at a national level. This reluctance is mirrored by a political reluctance to have a meaningful debate among our elected leaders.
"Death has become the enemy," says Donald Taylor. "This leads us to not think about dying. We don't plan our deaths well, and we are often caught by surprise when someone is dying. Then we throw everything we've got at it in an often futile attempt to save them."
Part three of this five-part series will investigate and discuss the politics of end-of-life care in the wake of last year's "death panels" imbroglio and the scaling back of expectations about health care reform.