In the din of voices arrayed against health care reform, one word has come to symbolize the presumed evil of the reformers' plans: rationing.
Falling for the argument framed by their adversaries, advocates of health care reform have pooh-poohed the claim rather than address the truth that, in certain circumstances, "rationing" at the end of life is a good thing, preventing endless suffering endured by patients with terminal conditions who are subjected to treatments they never wanted in the first place.
Americans lucky enough to have good health insurance are overtested, overmedicated and overtreated. Republicans have tried to tie overtreatment to malpractice reform, suggesting that doctors today practice "defensive medicine" in order to prevent lawsuits. The Republicans' only solution to the problem of excessive spending is to limit malpractice lawsuits, but this ignores the medical industry's primary motivation: revenue.
To the anxious health care consumer, pharmaceutical companies market newly minted afflictions, and medical equipment manufacturers aggressively press physicians to add elaborate screening equipment and laboratory facilities to their practices, building in a profit motive for both the doctor and his or her supplier for the overprescription of tests and screenings.
Yet despite all this testing, medicating and screening, health care is already rationed in the U.S. "by ability to pay," Peter Singer, professor of bioethics at Princeton University, writes in the New York Times Magazine.
Singer offers a list of staggering statistics to prove his point: An estimated 20,000 people die each year because the U.S. does not have universal health care (13,000 in the 55 to 64 age group); millions of insured Americans can't afford drug or treatment co-payments; more than 60 percent of bankruptcies are caused by illness; a full 54 percent of Americans report not visiting a doctor when sick and not filling a prescription because of cost.
Because resources are finite, rationing will always be a part of any health care system, whether overseen by insurance companies or the government; and frankly, always should be -- but not like this.
According to a 2-year-old study by Consumer Reports, about 40 percent of the U.S. population has inadequate access to health care, all but ensuring an early death to those among the un- and under-insured who have a life-threatening condition. Among the remaining 60 percent, many receive far more health resources than they need or want, more than is even good for them.
Excessive medication, tests and treatments are not only costly; they do little to improve the nation's health (PDF). If this abundance of treatment and testing truly reaped a bonanza in national well-being, the U.S. brand of health care would have a higher rating among nations than the pitiful ranking of 37 awarded the U.S. health care system by the World Health Organization.
Among the most overtreated are people on Medicare, those with other comprehensive insurance coverage who have terminal diseases, or those who are among the very, very old. Nearly a third of Medicare spending, $67 billion, is spent on patients in the last two years of life, reports the Times' Timothy Egan, whether that life is ending from a terminal disease or old age.
Billed as prolonging life, too often the treatments to which these patients are subjected serve only to prolong their deaths, often in painful or traumatic ways. And many would choose to forgo such overtreatment, if only they had an option to do so.
Attempts to discuss the inevitable and complicated need for end-of-life rationing are rarely rewarded with reasonable debate, despite the topic's importance to the future of our medical system.
Most notably, President Barack Obama recounted the cost of his grandmother's hip replacement weeks before her death, only to find his honesty yielding terrible results. Reform opponents ran with the narrative that Obama wants to kill your granny, scaring reformers in Congress into dropping the article from a House version of the health care reform bill that would have funded end-of-life counseling.
And the topic nobody will touch is how better, more-ethical rationing can improve the health of Americans.
Of course, if it is to be done ethically, end-of-life rationing of medical resources must be monitored and considered carefully.
In his version of a health care reform plan, Dr. Ezekiel Emanuel, a bioethicist and member of the Federal Council on Comparative Effectiveness Research and who serves as a health adviser to President Obama, suggested the creation of a federal and regional entities that would, among other responsibilities, take on the determination of "best practices," surveying the effectiveness of treatments, defining the scope of coverage and advising doctors on what really works.
The intention of best-practices boards, recommended by Emanuel (who is the brother of White House Chief of Staff Rahm Emanuel), is to do just that: rein in excess testing, medicating and treatments. The idea of these boards was quickly twisted by the right into Sarah Palin's claim of planned government "death panels," effectively shutting down the rationing conversation.
More recently, reform opponents named Ezekiel Emanuel one of two "deadly doctors" for daring to discuss the costs of health care; the other is Robert Pearlman, a bioethicist at the Department of Veterans Affairs and author of Your Life, Your Choices, a 52-page end-of-life planning document that reform opponents have labeled a "death book for veterans," criticizing it as a malicious method of reducing costs at Veterans Affairs.
Both doctors have been so maligned, say fellow ethicists, that the American Society for Bioethics and Humanities was compelled to issue a press release (PDF) on Aug. 25 to defend them. It reads:
… these ethicists have been incorrectly portrayed as seeking to disenfranchise patients from the decision-making process and thereby hasten their deaths. Mischaracterizing the work of any of the thoughtful people who have tried to contribute to this debate, attributing to them nightmarish views for purely political purposes, not only perpetrates a heinous form of intellectual violence against those individuals, it denigrates bioethics as a profession, and more importantly, it does a profound disservice to the society that we seek to serve.
Unfortunately, this rebuttal only contributes to a back-and-forth over the unsubstantiated charges that have come to characterize the debate over reform; it does little to address the dire problem of uninsured and underinsured Americans. With the way in which we currently ration health care now framed out of the conversation, we are left without a practical discussion of how to better distribute medical services.
The subject of rationing produces more heat than light, according to Humphrey Taylor, a former pollster for the British government. Health care reform is "fiendishly complicated," Taylor says. The public is "often strongly influenced by political rhetoric that varies from the accurate to the simplistic to the completely false," he explains. Social conservatives, for instance, have leveraged unfounded fears that allowing people choices in the scope of treatment they will accept while they are dying will encourage the elderly and terminally ill to "just die already."
Take, for instance the sad case of Barbara Wagner of Oregon, a 64-year-old lung-cancer patient whose death has become a cause celebre of opponents of health care reform.
Under headings like "Oregon Offers to Pay to Kill but not Treat Cancer Patient," and "This is What Government Rationed Health Care Looks Like," Wagner's story went viral in the conservative blogosphere. In 2008, Wagner petitioned her insurer, a public health plan offered by the state of Oregon for people ineligible for Medicare or Medicaid, for coverage of a $4,000-a-month experimental drug prescribed by her doctor.
The Oregon Health Program denied her request with an unsigned, indelicate letter that listed her treatment alternatives: palliative care (pain management), end-of-life care through a hospice, and/or use of the state's Death with Dignity law, which permits terminal patients to end their lives. There's no question that her request could have -- and should have -- been handled with more compassion.
"I got a letter in the mail that basically said if you want to take the pills [to end your life], we will help you get that from the doctor, and we will stand there and watch you die," Wagner said at the time. "But we won't give you the medication to live."
But a recent study of Tarceva, the drug prescribed by her doctor, showed little difference in the extension of life experienced by patients who took the drug: the median survival rate of patients like Wagner who took the drug was one month longer than those who took a placebo. After a raft of publicity, the drug-maker, OSI Pharmaceuticals, offered Wagner the drug for free. She died less than three months later.
We will never know what conversation Wagner had -- or should have had -- with her doctor regarding the end of her life, or how long she could have lived without the drug. What we do know is that a woman who was close to death did not want to die, was not ready to die and was led to believe that the drug denied her was her last chance to live.
And thanks to the bureaucratic insensitivity of OHP administrators (who have since enacted a more compassionate policy for contacting patients who petition for exceptional care), Wagner thought the state of Oregon would rather kill her for $50, the cost of lethal drugs, than let her live for $4,000.
In truth, it appears the greatest indignity Wagner suffered at the hands of her state insurance program and her doctor was their apparent failure to prepare her for imminent death.
"Most doctors do not excel at delivering bad news, decades of studies show, if only because it goes against their training to save lives, not end them," Anemona Hartocollis writes in the New York Times. A patient's hope for more time is often wrongly encouraged by the limited promise of aggressive treatments or experimental drugs. These aggressive treatments can rob them of any chance to make peace with death.
Palliative care, the treatment of pain in the dying, has over the past 10 years become more available to patients who wish to die "without being tormented by excessive medical care."
Still, aggressive remedial treatment is often the rule, despite evidence that a majority of seniors, when informed of their choices, don't want expensive, aggressive treatment. In a 2002 survey published in the Archives of Internal Medicine, 60 percent of seniors, when asked if they would like aggressive, intermediate or least-aggressive treatment, chose the least-aggressive method for treating a terminal disease. This finding is corroborated by a 2006 study that shows seniors would prefer to die at home instead of in a costly hospital or nursing home.
Yet many are deprived of finishing their lives on their own terms, due to a lack of counseling services that inform the dying of their options or of adequate pain management that prevents seniors from dying the way they want to.
"Palliative-care specialists often talk about wanting to curb the excesses of the medical machine, about their disillusionment over seeing patients whose bodies and spirits had been broken by the treatment they had hoped would cure them. But their intention … was not to limit people's choices or speed them toward death," writes Hartocollis.
Certainly the cost savings of allowing the dying to make their own treatment choices are secondary to successful fulfillment of patients' last wishes. But choice does mitigate excessive costs.
There are ethical and painless ways to contain the cost of universal health insurance and to ethically limit the effects of rationing. By providing a public option that competes with private companies, disparities in cost could be eliminated.
And if Medicare, as well as a new public plan, was allowed to negotiate lower drug prices with pharmaceutical companies, U.S. drug costs would fall more into line with those paid by other industrialized nations.
Overall, competition would slow the escalation of medical costs across the board. And by offering seniors and terminal patients a choice in how they die, the American people stand to improve their own lot in two important ways: greater control over their own lives, and the freeing up of medical resources for those who need them most.
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Ann Neumann is writing a book about death, grief and travel. She lives in Red Hook, Brooklyn, N.Y. She authors the blog Otherspoon.
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