Wednesday, July 15, 2009

WOULD YOU DIE FOR LOVE? Suicide Sweethearts?

With Help, Conductor and Wife Ended Lives By JOHN F. BURNS

LONDON — The controversy over the ethical and legal issues surrounding assisted suicide for the terminally ill was thrown into stark relief on Tuesday with the announcement that one of Britain’s most distinguished orchestra conductors, Sir Edward Downes, had flown to Switzerland last week with his wife and joined her in drinking a lethal cocktail of barbiturates provided by an assisted-suicide clinic.

Although friends who spoke to the British news media said Sir Edward was not known to have been terminally ill, they said he wanted to die with his ailing wife, who had been his partner for more than half a century.

The couple’s children said in an interview with The London Evening Standard that on Tuesday of last week they accompanied their father, 85, and their mother, Joan, 74, on the flight to Zurich, where the Swiss group Dignitas helped arrange the suicides. On Friday, the children said, they watched, weeping, as their parents drank “a small quantity of clear liquid” before lying down on adjacent beds, holding hands.

“Within a couple of minutes they were asleep, and died within 10 minutes,” Caractacus Downes, the couple’s 41-year-old son, said in the interview after his return to Britain. “They wanted to be next to each other when they died.” He added, “It is a very civilized way to end your life, and I don’t understand why the legal position in this country doesn’t allow it.”

Sir Edward, who was described in a statement issued earlier on Tuesday by Mr. Downes and his sister, Boudicca, 39, as “almost blind and increasingly deaf,” was principal conductor of the BBC Philharmonic Orchestra from 1980 to 1991. He was also a conductor of the Royal Opera House at Covent Garden in London, where he led 950 performances over more than 50 years.

Lady Downes, who British newspapers said was in the final stages of terminal cancer, was a former ballet dancer, choreographer and television producer who devoted her later years to working as her husband’s assistant.

“After 54 happy years together, they decided to end their own lives rather than continue to struggle with serious health problems,” the Downes children said in their statement.

British families who have used the Zurich clinic in the past have said that Dignitas charges about $6,570 for each assisted suicide.

Scotland Yard said in a statement on Tuesday that it had been informed on Monday “that a man and a woman” from London had died in Switzerland, and that it was “looking into the circumstances.” The information that prompted the police inquiry appeared to have been given voluntarily by the Downes family, which, Caractacus Downes said, “didn’t want to be untruthful about what had happened.”

“Even if they arrest us and send us to prison, it would have made no difference because it is what our parents wanted,” he said.

Attempting suicide has not been a criminal offense in Britain since 1961, but assisting others to kill themselves is. But since the Zurich clinic run by Dignitas was established in 1998 under Swiss laws that allow clinics to provide lethal drugs, British authorities have effectively turned a blind eye to Britons who go there to die.

None of the family members and friends who have accompanied the 117 people living in Britain who have traveled to the Zurich clinic for help in ending their lives have been charged with an offense. Legal experts said it was unlikely that that would change in the Downes case.

But British news reports about the Downeses’ suicides noted one factor that appeared to set the case apart from others involving the Dignitas clinic: Sir Edward appeared not to have been terminally ill. There have been at least three other cases similar to the Downeses’, in which a spouse who was not terminally ill chose to die with the other.

Sir Edward was known for his support for British composers and his passion for Prokofiev and Verdi. After studying at the Royal College of Music in London, he joined the Royal Opera House in 1952. His first assignment was prompting the soprano Maria Callas. He traveled widely as a conductor and became music director of the Australian Opera in the 1970s.

Friends of Sir Edward said that his decision to die with his wife did not surprise them. “Ted was completely rational,” said Richard Wigley, the general manager of the BBC Philharmonic. “So I can well imagine him, being so rational, saying, ‘It’s been great, so let’s end our lives together.’ ”

Jonathan Groves, Sir Edward’s manager, called their decision “typically brave and courageous.”

But even among those who support decriminalizing assisted suicide, Sir Edward’s death raised troubling questions. Sarah Wootton, chief executive of Dignity in Dying, said in a BBC interview that the growing numbers of Britons going abroad to die, and the manner of their deaths, made it more urgent to amend Britain’s laws. There are “no safeguards, no brakes on the process at all,” she said.

The British Medical Association voted this month against legalizing assisted suicide, or lifting the threat of prosecution from “friends and relatives who accompany loved ones to die abroad.” Last week, the House of Lords defeated a bill that would have allowed people, subject to safeguards, to travel abroad to help people choosing to die.

This article has been revised to reflect the following correction:

Correction: July 16, 2009
An article on Wednesday about the double assisted suicide of a distinguished British conductor and his wife at a clinic in Switzerland misstated British law on suicides. Assisting others to commit suicide is a criminal offense, not attempting suicide. (The prohibition on attempting suicide was decriminalized in 1961.).

White Man’s Last Stand MAUREEN DOWD

NYTimes/Washington

You can’t judge a judge by her cover.

Despite the best efforts of Republicans to root out any sign that Sonia Sotomayor has emotions that color her views on the law, the Bronx Bomber kept a robotic mask in place.

A wise Latina woman with the richness of her experiences would more often than not know that a gaggle of white Republican men afraid of extinction are out to trip her up.

After all, these guys have never needed to speak inspirational words to others like them, as Sotomayor has done. They’ve had codes, handshakes and clubs to do that.

So when Republican Senator Jon Kyl, without so much as a howdy-do, went at Sotomayor, and soon was asking her if she agreed with Barack Obama’s contention, when he voted against John Roberts, that a judge’s heart is important, the would-be justice was as adroit as her idol Nancy Drew.

“No, sir,” she said, indicating that the only bleeding-heart thing about her was the color of her jacket. She added that “it’s not the heart that compels conclusions in cases. It’s the law.”

President Obama wants Sotomayor, naturally, to bring a fresh perspective to the court. It was a disgrace that W. appointed two white men to a court stocked with white men. And Sotomayor made it clear that she provides some spicy seasoning to a bench when she said in a speech: “I simply do not know exactly what the difference will be in my judging, but I accept there will be some based on gender and my Latina heritage.”

The judge’s full retreat from the notion that a different life experience is valuable was more than necessary and somewhat disappointing. But, as any clever job applicant knows, you must obscure as well as reveal, so she sidestepped the dreaded empathy questions — even though that’s why the president wants her.

“We apply law to facts,” she told Kyl. “We don’t apply feelings to facts.”

She even used a flat tone when talking about the “horrific tragedy” of 9/11, when she was living near the World Trade Center. And she was mechanical in explaining to a grumpy Senator Orrin Hatch that banning nunchaku sticks did not dent the Second Amendment because the martial-arts weapons’ swing “can bust someone’s skull.”

Democratic Senator Chuck Schumer gamely tried to make the judge seem even more coldhearted. Recalling the sad plight of poor families from the Bronx who sued T.W.A. after a jet crashed off Long Island in 1996, he quoted the Bronx jurist’s dispassionate dissent: “The appropriate remedial scheme for deaths occurring off the United States coast is clearly a legislative policy choice, which should not be made by the courts.”

Schumer also cited the case of an African-American woman who filed suit after being denied a home-equity loan, even after the loan application was conditionally approved based on her credit report.

Sonia Legree ruled that the woman’s claim was filed too late, the same argument that the Supremes used on Lilly Ledbetter when she belatedly learned that her male coworkers were much better paid. President Obama has cited the Ledbetter decision as a reason the court needs a more “common touch.”

“The law requires some finality,” Sotomayor explained about her case, with an iciness that must have sent a chill up the conservative leg of Alabama’s Jefferson Beauregard Sessions III, even as it left Obama hanging out on an empathy limb.

Republican Lindsey Graham read Sotomayor some anonymous comments made by lawyers about her, complaining that she was “temperamental,” “nasty,” “a bit of a bully.” Then he patronizingly lectured her about how this was the moment for “self-reflection.” Maybe Graham thinks Nino Scalia has those traits covered.

But the barbed adjectives didn’t match the muted performance on display before the Judiciary Committee. Like the president who picked her, Sotomayor has been a model of professorial rationality. Besides, it’s delicious watching Republicans go after Democrats for being too emotional and irrational given the G.O.P. shame spiral.

W. and Dick Cheney made all their bad decisions about Iraq, W.M.D.’s, domestic surveillance, torture, rendition and secret hit squads from the gut, based on false intuitions, fear, paranoia and revenge.

Sarah Palin is the definition of irrational, a volatile and scattered country-music queen without the music. Her Republican fans defend her lack of application and intellect, happy to settle for her emotional electricity.

Senator Graham said Sotomayor would be confirmed unless she had “a meltdown” — a word applied mostly to women and toddlers until Mark Sanford proudly took ownership of it when he was judged about the wisdom of his Latina woman.

And then there’s the Supreme Court, of course, which gave up its claim to rational neutrality when the justices appointed by Republican presidents — including Bush Sr. — ignored what was fair to make a sentimental choice and throw the 2000 election to W.

Faced with that warped case of supreme empathy, no wonder Sotomayor is so eager to follow the law.

Why We Must Ration Health Care

NYTimes by PETER SINGER

You have advanced kidney cancer. It will kill you, probably in the next year or two. A drug called Sutent slows the spread of the cancer and may give you an extra six months, but at a cost of $54,000. Is a few more months worth that much?

If you can afford it, you probably would pay that much, or more, to live longer, even if your quality of life wasn’t going to be good. But suppose it’s not you with the cancer but a stranger covered by your health-insurance fund. If the insurer provides this man — and everyone else like him — with Sutent, your premiums will increase. Do you still think the drug is a good value? Suppose the treatment cost a million dollars. Would it be worth it then? Ten million? Is there any limit to how much you would want your insurer to pay for a drug that adds six months to someone’s life? If there is any point at which you say, “No, an extra six months isn’t worth that much,” then you think that health care should be rationed.

In the current U.S. debate over health care reform, “rationing” has become a dirty word. Meeting last month with five governors, President Obama urged them to avoid using the term, apparently for fear of evoking the hostile response that sank the Clintons’ attempt to achieve reform. In a Wall Street Journal op-ed published at the end of last year with the headline “Obama Will Ration Your Health Care,” Sally Pipes, C.E.O. of the conservative Pacific Research Institute, described how in Britain the national health service does not pay for drugs that are regarded as not offering good value for money, and added, “Americans will not put up with such limits, nor will our elected representatives.” And the Democratic chair of the Senate Finance Committee, Senator Max Baucus, told CNSNews in April, “There is no rationing of health care at all” in the proposed reform.

Remember the joke about the man who asks a woman if she would have sex with him for a million dollars? She reflects for a few moments and then answers that she would. “So,” he says, “would you have sex with me for $50?” Indignantly, she exclaims, “What kind of a woman do you think I am?” He replies: “We’ve already established that. Now we’re just haggling about the price.” The man’s response implies that if a woman will sell herself at any price, she is a prostitute. The way we regard rationing in health care seems to rest on a similar assumption, that it’s immoral to apply monetary considerations to saving lives — but is that stance tenable?

Health care is a scarce resource, and all scarce resources are rationed in one way or another. In the United States, most health care is privately financed, and so most rationing is by price: you get what you, or your employer, can afford to insure you for. But our current system of employer-financed health insurance exists only because the federal government encouraged it by making the premiums tax deductible. That is, in effect, a more than $200 billion government subsidy for health care. In the public sector, primarily Medicare, Medicaid and hospital emergency rooms, health care is rationed by long waits, high patient copayment requirements, low payments to doctors that discourage some from serving public patients and limits on payments to hospitals.

The case for explicit health care rationing in the United States starts with the difficulty of thinking of any other way in which we can continue to provide adequate health care to people on Medicaid and Medicare, let alone extend coverage to those who do not now have it. Health-insurance premiums have more than doubled in a decade, rising four times faster than wages. In May, Medicare’s trustees warned that the program’s biggest fund is heading for insolvency in just eight years. Health care now absorbs about one dollar in every six the nation spends, a figure that far exceeds the share spent by any other nation. According to the Congressional Budget Office, it is on track to double by 2035.

President Obama has said plainly that America’s health care system is broken. It is, he has said, by far the most significant driver of America’s long-term debt and deficits. It is hard to see how the nation as a whole can remain competitive if in 25 years we are spending nearly a third of what we earn on health care, while other industrialized nations are spending far less but achieving health outcomes as good as, or better than, ours.

Rationing health care means getting value for the billions we are spending by setting limits on which treatments should be paid for from the public purse. If we ration we won’t be writing blank checks to pharmaceutical companies for their patented drugs, nor paying for whatever procedures doctors choose to recommend. When public funds subsidize health care or provide it directly, it is crazy not to try to get value for money. The debate over health care reform in the United States should start from the premise that some form of health care rationing is both inescapable and desirable. Then we can ask, What is the best way to do it?

Last year Britain’s National Institute for Health and Clinical Excellence gave a preliminary recommendation that the National Health Service should not offer Sutent for advanced kidney cancer. The institute, generally known as NICE, is a government-financed but independently run organization set up to provide national guidance on promoting good health and treating illness. The decision on Sutent did not, at first glance, appear difficult. NICE had set a general limit of £30,000, or about $49,000, on the cost of extending life for a year. Sutent, when used for advanced kidney cancer, cost more than that, and research suggested it offered only about six months extra life. But the British media leapt on the theme of penny-pinching bureaucrats sentencing sick people to death. The issue was then picked up by the U.S. news media and by those lobbying against health care reform in the United States. An article in The New York Times last December featured Bruce Hardy, a kidney-cancer patient whose wife, Joy, said, “It’s hard to know that there is something out there that could help but they’re saying you can’t have it because of cost.” Then she asked the classic question: “What price is life?”

Last November, Bloomberg News focused on Jack Rosser, who was 57 at the time and whose doctor had told him that with Sutent he might live long enough to see his 1-year-old daughter, Emma, enter primary school. Rosser’s wife, Jenny, is quoted as saying: “It’s immoral. They are sentencing him to die.” In the conservative monthly The American Spectator, David Catron, a health care consultant, describes Rosser as “one of NICE’s many victims” and writes that NICE “regularly hands down death sentences to gravely ill patients.” Linking the British system with Democratic proposals for reforming health care in the United States, Catron asked whether we really deserve a health care system in which “soulless bureaucrats arbitrarily put a dollar value on our lives.” (In March, NICE issued a final ruling on Sutent. Because of how few patients need the drug and because of special end-of-life considerations, it recommended that the drug be provided by the National Health Service to patients with advanced kidney cancer. )

There’s no doubt that it’s tough — politically, emotionally and ethically — to make a decision that means that someone will die sooner than they would have if the decision had gone the other way. But if the stories of Bruce Hardy and Jack Rosser lead us to think badly of the British system of rationing health care, we should remind ourselves that the U.S. system also results in people going without life-saving treatment — it just does so less visibly. Pharmaceutical manufacturers often charge much more for drugs in the United States than they charge for the same drugs in Britain, where they know that a higher price would put the drug outside the cost-effectiveness limits set by NICE. American patients, even if they are covered by Medicare or Medicaid, often cannot afford the copayments for drugs. That’s rationing too, by ability to pay.

Dr. Art Kellermann, associate dean for public policy at Emory School of Medicine in Atlanta, recently wrote of a woman who came into his emergency room in critical condition because a blood vessel had burst in her brain. She was uninsured and had chosen to buy food for her children instead of spending money on her blood-pressure medicine. In the emergency room, she received excellent high-tech medical care, but by the time she got there, it was too late to save her.

A New York Times report on the high costs of some drugs illustrates the problem. Chuck Stauffer, an Oregon farmer, found that his prescription-drug insurance left him to pay $5,500 for his first 42 days of Temodar, a drug used to treat brain tumors, and $1,700 a month after that. For Medicare patients drug costs can be even higher, because Medicare can require a copayment of 25 percent of the cost of the drug. For Gleevec, a drug that is effective against some forms of leukemia and some gastrointestinal tumors, that one-quarter of the cost can run to $40,000 a year.

In Britain, everyone has health insurance. In the U.S., some 45 million do not, and nor are they entitled to any health care at all, unless they can get themselves to an emergency room. Hospitals are prohibited from turning away anyone who will be endangered by being refused treatment. But even in emergency rooms, people without health insurance may receive less health care than those with insurance. Joseph Doyle, a professor of economics at the Sloan School of Management at M.I.T., studied the records of people in Wisconsin who were injured in severe automobile accidents and had no choice but to go to the hospital. He estimated that those who had no health insurance received 20 percent less care and had a death rate 37 percent higher than those with health insurance. This difference held up even when those without health insurance were compared with those without automobile insurance, and with those on Medicaid — groups with whom they share some characteristics that might affect treatment. The lack of insurance seems to be what caused the greater number of deaths.

When the media feature someone like Bruce Hardy or Jack Rosser, we readily relate to individuals who are harmed by a government agency’s decision to limit the cost of health care. But we tend not to hear about — and thus don’t identify with — the particular individuals who die in emergency rooms because they have no health insurance. This “identifiable victim” effect, well documented by psychologists, creates a dangerous bias in our thinking. Doyle’s figures suggest that if those Wisconsin accident victims without health insurance had received equivalent care to those with it, the additional health care would have cost about $220,000 for each life saved. Those who died were on average around 30 years old and could have been expected to live for at least another 40 years; this means that had they survived their accidents, the cost per extra year of life would have been no more than $5,500 — a small fraction of the $49,000 that NICE recommends the British National Health Service should be ready to pay to give a patient an extra year of life. If the U.S. system spent less on expensive treatments for those who, with or without the drugs, have at most a few months to live, it would be better able to save the lives of more people who, if they get the treatment they need, might live for several decades.

Estimates of the number of U.S. deaths caused annually by the absence of universal health insurance go as high as 20,000. One study concluded that in the age group 55 to 64 alone, more than 13,000 extra deaths a year may be attributed to the lack of insurance coverage. But the estimates vary because Americans without health insurance are more likely, for example, to smoke than Americans with health insurance, and sorting out the role that the lack of insurance plays is difficult. Richard Kronick, a professor at the School of Medicine at the University of California, San Diego, cautiously concludes from his own study that there is little evidence to suggest that extending health insurance to all Americans would have a large effect on the number of deaths in the United States. That doesn’t mean that it wouldn’t; we simply don’t know if it would.

In any case, it isn’t only uninsured Americans who can’t afford treatment. President Obama has spoken about his mother, who died from ovarian cancer in 1995. The president said that in the last weeks of her life, his mother “was spending too much time worrying about whether her health insurance would cover her bills” — an experience, the president went on to say, that his mother shared with millions of other Americans. It is also an experience more common in the United States than in other developed countries. A recent Commonwealth Fund study led by Cathy Schoen and Robin Osborn surveyed adults with chronic illness in Australia, Canada, France, Germany, the Netherlands, New Zealand, the United Kingdom and the United States. Far more Americans reported forgoing health care because of cost. More than half (54 percent) reported not filling a prescription, not visiting a doctor when sick or not getting recommended care. In comparison, in the United Kingdom the figure was 13 percent, and in the Netherlands, only 7 percent. Even among Americans with insurance, 43 percent reported that cost was a problem that had limited the treatment they received. According to a 2007 study led by David Himmelstein, more than 60 percent of all bankruptcies are related to illness, with many of these specifically caused by medical bills, even among those who have health insurance. In Canada the incidence of bankruptcy related to illness is much lower.

When a Washington Post journalist asked Daniel Zemel, a Washington rabbi, what he thought about federal agencies putting a dollar value on human life, the rabbi cited a Jewish teaching explaining that if you put one human life on one side of a scale, and you put the rest of the world on the other side, the scale is balanced equally. Perhaps that is how those who resist health care rationing think. But we already put a dollar value on human life. If the Department of Transportation, for example, followed rabbinical teachings it would exhaust its entire budget on road safety. Fortunately the department sets a limit on how much it is willing to pay to save one human life. In 2008 that limit was $5.8 million. Other government agencies do the same. Last year the Consumer Product Safety Commission considered a proposal to make mattresses less likely to catch fire. Information from the industry suggested that the new standard would cost $343 million to implement, but the Consumer Product Safety Commission calculated that it would save 270 lives a year — and since it valued a human life at around $5 million, that made the new standard a good value. If we are going to have consumer-safety regulation at all, we need some idea of how much safety is worth buying. Like health care bureaucrats, consumer-safety bureaucrats sometimes decide that saving a human life is not worth the expense. Twenty years ago, the National Research Council, an arm of the National Academy of Sciences, examined a proposal for installing seat belts in all school buses. It estimated that doing so would save, on average, one life per year, at a cost of $40 million. After that, support for the proposal faded away. So why is it that those who accept that we put a price on life when it comes to consumer safety refuse to accept it when it comes to health care?

Of course, it’s one thing to accept that there’s a limit to how much we should spend to save a human life, and another to set that limit. The dollar value that bureaucrats place on a generic human life is intended to reflect social values, as revealed in our behavior. It is the answer to the question “How much are you willing to pay to save your life?” — except that, of course, if you asked that question of people who were facing death, they would be prepared to pay almost anything to save their lives. So instead, economists note how much people are prepared to pay to reduce the risk that they will die. How much will people pay for air bags in a car, for instance? Once you know how much they will pay for a specified reduction in risk, you multiply the amount that people are willing to pay by how much the risk has been reduced, and then you know, or so the theory goes, what value people place on their lives. Suppose that there is a 1 in 100,000 chance that an air bag in my car will save my life, and that I would pay $50 — but no more than that — for an air bag. Then it looks as if I value my life at $50 x 100,000, or $5 million.

The theory sounds good, but in practice it has problems. We are not good at taking account of differences between very small risks, so if we are asked how much we would pay to reduce a risk of dying from 1 in 1,000,000 to 1 in 10,000,000, we may give the same answer as we would if asked how much we would pay to reduce the risk from 1 in 500,000 to 1 in 10,000,000. Hence multiplying what we would pay to reduce the risk of death by the reduction in risk lends an apparent mathematical precision to the outcome of the calculation — the supposed value of a human life — that our intuitive responses to the questions cannot support. Nevertheless this approach to setting a value on a human life is at least closer to what we really believe — and to what we should believe — than dramatic pronouncements about the infinite value of every human life, or the suggestion that we cannot distinguish between the value of a single human life and the value of a million human lives, or even of the rest of the world. Though such feel-good claims may have some symbolic value in particular circumstances, to take them seriously and apply them — for instance, by leaving it to chance whether we save one life or a billion — would be deeply unethical.

Governments implicitly place a dollar value on a human life when they decide how much is to be spent on health care programs and how much on other public goods that are not directed toward saving lives. The task of health care bureaucrats is then to get the best value for the resources they have been allocated. It is the familiar comparative exercise of getting the most bang for your buck. Sometimes that can be relatively easy to decide. If two drugs offer the same benefits and have similar risks of side effects, but one is much more expensive than the other, only the cheaper one should be provided by the public health care program. That the benefits and the risks of side effects are similar is a scientific matter for experts to decide after calling for submissions and examining them. That is the bread-and-butter work of units like NICE. But the benefits may vary in ways that defy straightforward comparison. We need a common unit for measuring the goods achieved by health care. Since we are talking about comparing different goods, the choice of unit is not merely a scientific or economic question but an ethical one.

As a first take, we might say that the good achieved by health care is the number of lives saved. But that is too crude. The death of a teenager is a greater tragedy than the death of an 85-year-old, and this should be reflected in our priorities. We can accommodate that difference by calculating the number of life-years saved, rather than simply the number of lives saved. If a teenager can be expected to live another 70 years, saving her life counts as a gain of 70 life-years, whereas if a person of 85 can be expected to live another 5 years, then saving the 85-year-old will count as a gain of only 5 life-years. That suggests that saving one teenager is equivalent to saving 14 85-year-olds. These are, of course, generic teenagers and generic 85-year-olds. It’s easy to say, “What if the teenager is a violent criminal and the 85-year-old is still working productively?” But just as emergency rooms should leave criminal justice to the courts and treat assailants and victims alike, so decisions about the allocation of health care resources should be kept separate from judgments about the moral character or social value of individuals.

Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people’s values on that too. One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.

This is the basis of the quality-adjusted life-year, or QALY, a unit designed to enable us to compare the benefits achieved by different forms of health care. The QALY has been used by economists working in health care for more than 30 years to compare the cost-effectiveness of a wide variety of medical procedures and, in some countries, as part of the process of deciding which medical treatments will be paid for with public money. If a reformed U.S. health care system explicitly accepted rationing, as I have argued it should, QALYs could play a similar role in the U.S.

Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.

This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. That implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition.

The QALY tells us to do what brings about the greatest health benefit, irrespective of where that benefit falls. Usually, for a given quantity of resources, we will do more good if we help those who are worst off, because they have the greatest unmet needs. But occasionally some conditions will be both very severe and very expensive to treat. A QALY approach may then lead us to give priority to helping others who are not so badly off and whose conditions are less expensive to treat. I don’t find it unfair to give the same weight to the interests of those who are well off as we give to those who are much worse off, but if there is a social consensus that we should give priority to those who are worse off, we can modify the QALY approach so that it gives greater weight to benefits that accrue to those who are, on the QALY scale, worse off than others.

The QALY approach does not even try to measure the benefits that health care brings in addition to the improvement in health itself. Emotionally, we feel that the fact that Jack Rosser is the father of a young child makes a difference to the importance of extending his life, but his parental status is irrelevant to a QALY assessment of the health care gains that Sutent would bring him. Whether decisions about allocating health care resources should take such personal circumstances into account isn’t easy to decide. Not to do so makes the standard inflexible, but taking personal factors into account increases the scope for subjective — and prejudiced — judgments.

The QALY is not a perfect measure of the good obtained by health care, but its defenders can support it in the same way that Winston Churchill defended democracy as a form of government: it is the worst method of allocating health care, except for all the others. If it isn’t possible to provide everyone with all beneficial treatments, what better way do we have of deciding what treatments people should get than by comparing the QALYs gained with the expense of the treatments?

Will Americans allow their government, either directly or through an independent agency like NICE, to decide which treatments are sufficiently cost-effective to be provided at public expense and which are not? They might, under two conditions: first, that the option of private health insurance remains available, and second, that they are able to see, in their own pocket, the full cost of not rationing health care.

Rationing public health care limits free choice if private health insurance is prohibited. But many countries combine free national health insurance with optional private insurance. Australia, where I’ve spent most of my life and raised a family, is one. The U.S. could do something similar. This would mean extending Medicare to the entire population, irrespective of age, but without Medicare’s current policy that allows doctors wide latitude in prescribing treatments for eligible patients. Instead, Medicare for All, as we might call it, should refuse to pay where the cost per QALY is extremely high. (On the other hand, Medicare for All would not require more than a token copayment for drugs that are cost-effective.) The extension of Medicare could be financed by a small income-tax levy, for those who pay income tax — in Australia the levy is 1.5 percent of taxable income. (There’s an extra 1 percent surcharge for those with high incomes and no private insurance. Those who earn too little to pay income tax would be carried at no cost to themselves.) Those who want to be sure of receiving every treatment that their own privately chosen physicians recommend, regardless of cost, would be free to opt out of Medicare for All as long as they can demonstrate that they have sufficient private health insurance to avoid becoming a burden on the community if they fall ill. Alternatively, they might remain in Medicare for All but take out supplementary insurance for health care that Medicare for All does not cover. Every American will have a right to a good standard of health care, but no one will have a right to unrationed health care. Those who opt for unrationed health care will know exactly how much it costs them.

One final comment. It is common for opponents of health care rationing to point to Canada and Britain as examples of where we might end up if we get “socialized medicine.” On a blog on Fox News earlier this year, the conservative writer John Lott wrote, “Americans should ask Canadians and Brits — people who have long suffered from rationing — how happy they are with central government decisions on eliminating ‘unnecessary’ health care.” There is no particular reason that the United States should copy the British or Canadian forms of universal coverage, rather than one of the different arrangements that have developed in other industrialized nations, some of which may be better. But as it happens, last year the Gallup organization did ask Canadians and Brits, and people in many different countries, if they have confidence in “health care or medical systems” in their country. In Canada, 73 percent answered this question affirmatively. Coincidentally, an identical percentage of Britons gave the same answer. In the United States, despite spending much more, per person, on health care, the figure was only 56 percent.

Peter Singer is professor of bioethics at Princeton University. He is also laureate professor at the University of Melbourne, in Australia. His most recent book is “The Life You Can Save: Acting Now to End World Poverty.”

The next hacking frontier: Your brain?

Story Highlights

Scientists can use thoughts to operate computers, wheelchairs and Twitter

As tech develops, risk of "brain hacking" become more real, scientists say

Neurosurgical Focus article says risks are slim now

But security "should proceed in lockstep with the technology," expert says


WWW.WIRED.COM

Hackers who commandeer your computer are bad enough. Now scientists worry that someday, they'll try to take over your brain.

In the past year, researchers have developed technology that makes it possible to use thoughts to operate a computer, maneuver a wheelchair or even use Twitter -- all without lifting a finger. But as neural devices become more complicated, and go wireless, some scientists say the risks of "brain hacking" should be taken seriously.

"Neural devices are innovating at an extremely rapid rate and hold tremendous promise for the future," said computer security expert Tadayoshi Kohno of the University of Washington.

"But if we don't start paying attention to security, we're worried that we might find ourselves in five or 10 years saying we've made a big mistake."

Hackers tap into personal computers all the time. But what would happen if they focused their nefarious energy on neural devices, such as the deep-brain stimulators used to treat Parkinson's and depression, or electrode systems for controlling prosthetic limbs?

According to Kohno and his colleagues, who published their concerns July 1 in Neurosurgical Focus, most devices carry few security risks. But as neural engineering becomes more complex and more widespread, the potential for security breaches will mushroom.

"It's very hard to design complex systems that don't have bugs," Kohno said. "As these medical devices start to become more and more complicated, it gets easier and easier for people to overlook a bug that could become a very serious risk. It might border on science fiction today, but so did going to the moon 50 years ago."

Some might question why anyone would want to hack into someone else's brain, but the researchers say there's a precedent for using computers to cause neurological harm. In November 2007 and March 2008, malicious programmers vandalized epilepsy support Web sites by putting up flashing animations, which caused seizures in some photo-sensitive patients.

"It happened on two separate occasions," said computer science graduate student Tamara Denning, a co-author on the paper. "It's evidence that people will be malicious and try to compromise peoples' health using computers, especially if neural devices become more widespread."

In some cases, patients might even want to hack into their own neural device. Unlike devices to control prosthetic limbs, which still use wires, many deep brain stimulators already rely on wireless signals. Hacking into these devices could enable patients to "self-prescribe" elevated moods or pain relief by increasing the activity of the brain's reward centers.

Despite the risks, Kohno said, most new devices aren't created with security in mind. Neural engineers carefully consider the safety and reliability of new equipment, and neuroethicists focus on whether a new device fits ethical guidelines. But until now, few groups have considered how neural devices might be hijacked to perform unintended actions. This is the first time an academic paper has addressed the topic of "neurosecurity," a term the group coined to describe their field.

"The security and privacy issues somehow seem to slip by," Kohno said. "I would not be surprised if most people working in this space have never thought about security."

Kevin Otto, a bioengineer who studies brain-machine interfaces at Purdue Universty, said he was initially skeptical of the research. "When I first picked up the paper, I don't know if I agreed that it was an issue. But the paper gives a very compelling argument that this is important, and that this is the time to have neural engineers collaborate with security developers."

It's never too early to start thinking about security issues, said neural engineer Justin Williams of the University of Wisconsin, who was not involved in the research. But he stressed that the kinds of devices available today are not susceptible to attack, and that fear of future risks shouldn't impede progress in the field. "These kinds of security issues have to proceed in lockstep with the technology," Williams said.

History provides plenty of examples of why it's important to think about security before it becomes a problem, Kohno said. Perhaps the best example is the Internet, which was originally conceived as a research project and didn't take security into account.

"Because the Internet was not originally designed with security in mind," the researchers wrote, "it is incredibly challenging -- if not impossible -- to retrofit the existing Internet infrastructure to meet all of today's security goals." Kohno and his colleagues hope to avoid such problems in the neural device world, by getting the community to discuss potential security problems before they become a reality.

"The first thing is to ask ourselves is, 'Could there be a security and privacy problem?'" Kohno said. "Asking 'Is there a problem?' gets you 90 percent there, and that's the most important thing."

Ensign's mistress may decide future

Politico Victoria McGrane and Manu Raju


Cindy Hampton once held the keys to John Ensign’s heart.

Now she might hold the key to his career.

Doug Hampton — Ensign’s former chief of staff and the husband of his mistress — has called on the Nevada Republican to resign, saying that he’s guilty of both sexual harassment and wrongful termination.

But to make those charges stick, Cynthia “Cindy” Hampton herself must step forward and accuse her former lover and longtime employer of making unwanted advances or creating a hostile work environment, lawyers and ethics experts say.

And so far, she is the only participant in the love triangle to remain silent on the matter.

“The harassment claim has to come from the person harassed,” said Stan Brand, a congressional ethics expert and former general counsel of the House. “I don’t think the Senate Ethics Committee or anybody else in the Senate can begin an investigation of that nature without a complainant, nor should they.”

Ensign appears to have survived the initial stages of his sex scandal, telling the Las Vegas Sun Monday that he intends to remain in office and run for reelection in 2012.

But his behavior has frustrated his Republican Senate colleagues — asked Tuesday whether he’d support Ensign in 2012, Senate Minority Leader Mitch McConnell (R-Ky.) said Ensign “will have to speak to those issues himself” — and the possibility of a contentious and embarrassing civil case still looms.

It’s just not clear which kind.

Ensign’s behavior in the Hampton affair so thoroughly blurred the lines between sexual, familial, professional and financial boundaries that experts are at a loss to figure out what kind of legal or ethics case Ensign could face if his former mistress pressed one — or if the Senate ethics panel decides to go ahead with its own probe.

“I’ve never had a case like that,” said Washington lawyer Lynn Andretta, who mediates sexual harassment cases in the District of Columbia.

In a two-part television interview with a Las Vegas Sun columnist last week, Hampton accused Ensign of asking him to quit his high-paying job on the Senate staff last spring to help cover up the affair — and to avoid the unpleasantness of having the two men work side by side.

He went on to claim that Ensign allowed Cindy to keep her job as Ensign’s campaign treasurer for weeks longer — but used her employment as “leverage” to continue the affair.

While the Hamptons have legal counsel, neither of them has filed a lawsuit or an ethics complaint yet — and Hampton has refused to say what the couple plans to do.

In the meantime, the nonpartisan Citizens for Responsibility and Ethics in Washington has asked the Federal Election Commission, the Justice Department and the Senate Ethics Committee to probe the allegations and the distribution of nearly $100,000 in gifts from Ensign’s wealthy parents to the Hamptons.

“Given that Sen. Ensign conducted an affair with a campaign employee who is married to a member of his office staff, and that both individuals were terminated, apparently for reasons related to the affair, the Select Committee on Ethics should immediately open an investigation into this matter,” CREW’s complaint said.

“It’s one thing to be a creep. It’s another to be a harasser, to abuse your position of power,” said former federal prosecutor Melanie Sloan, CREW’s executive director. She contends that there are enough questions swirling around Ensign to warrant an ethics probe, pointing out that the Ethics Committee can investigate without Cindy Hampton making a formal complaint.


And if the Ethics Committee were to do so, she said, it could force both Hamptons to testify under oath.

“The Hamptons obviously don’t look wonderful here either, neither one. But they’re not the public figures,” she added. “Really every other senator — expect for maybe David Vitter — must be cringing from the humiliation of it. It looks bad for all senators when a senator behaves like this.”

Ensign has denied that he harassed his mistress, claiming that the affair was entirely consensual. And Ensign has accused Doug Hampton — once one of his best friends — of trying to shake him down.

Calls to lawyers representing both Ensign and the Hamptons weren’t returned. The Senate Ethics Committee refused to comment.

Under local, state and federal law, employers are not allowed to use the threat of termination to extort sex or other personal favors from their employees.

The Ethics Committee has three legal paths for investigating allegations of harassment or wrongful termination: Title VII of the 1964 Civil Rights Act, Senate Rule 42 and the Congressional Accountability Act of 1995, a law passed in the midst of the Bob Packwood scandal. Packwood, a Republican from Oregon, resigned from the Senate in 1995 after the ethics panel voted to recommend his expulsion based on allegations that he had harassed more than 10 women, including staffers and campaign workers.

It remains unclear whether either of the Hamptons was actually terminated — and if so, why.

If Cindy Hampton was fired because she refused to continue the affair, that would be a clear case of what lawyers call “quid pro quo” sexual harassment, in which an employee suffers an employment action — firing or demotion — for refusing to submit to the unwelcome sexual advances.

But experts say the charge could also apply in cases where a sexual relationship started voluntarily — or possibly if Doug Hampton’s career was threatened.

“Some courts have made clear that supervisors can’t basically date an employee and then, upon their breaking up, fire them,” said Fatima Goss Graves, senior counsel with the National Women’s Law Center.

Sexual harassment can also come in the form of a “hostile working environment,” which would include conduct — including but not limited to sexual advances — that makes an employee so uncomfortable she has to leave her job, even if she isn’t technically forced to by the supervisor.

GOP senators rallied behind Ensign when he returned after initially admitting the affair. But as McConnell’s response indicated Tuesday, that support has become increasingly tepid.

Sen. Lindsey Graham (R-S.C.) said an investigation into Ensign “isn’t high on my list” of priorities, adding, “I guess if it got in the land of a crime, it’d be a problem — but I don’t see any evidence of that.”

Like most Republicans, Sen. John Thune (R-S.D.) — who took Ensign’s spot as Republican Policy Committee chairman — sounded uneasy about the situation and what else may be coming down.

“I think up to now, he’s done a good job of dealing with it,” Thune said.

“I don’t know what else may be out there, but I’m just not prepared to make any comment about that. I think, you know, this thing will play itself out, and he’ll do the right thing. I have that confidence.”

But it’s far from clear what Republicans think the right thing is. Some Republicans privately predict Ensign might have to step down if the allegations of sexual harassment are proven to be true.