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Rationing of medical care under study

Doctors seeking plan as costs soar

A group of doctors and medical ethicists, including physicians from Brown and Harvard universities, is working to develop national guidelines for the rationing of expensive intensive-care unit treatment -- and to get doctors to openly admit they withhold care from patients who would benefit the least. Physicians and nurses too often make rationing decisions based on their own biases or their hospital's financial condition, members of the task force say. This happens most often with ICU care, which accounts for 20 percent of all hospital costs, or $142 billion in 2001.

The group is tackling one of medicine's most pressing problems -- the soaring cost of care, how to pay for it, and who should get it. But its work is expected to be controversial. In Oregon, the one state that rations medical care for the poor, the program took a decade to implement and has outraged patients and doctors. "Most physicians don't want to admit they engage in it, but the truth is bedside rationing happens all the time," said Dr. Mitchell Levy, chairman of the task force, a Brown Medical School professor, and director of the medical ICU at Rhode Island Hospital. "There's nothing wrong with it; it shouldn't be taboo. We should do it wisely."

In an informal national poll of 620 intensive care physicians last year, 55 percent of doctors said they've withheld medication, tests, or services because they felt the cost outweighed the potential benefits to the patient, the Society of Critical Care Medicine, a professional group of intensive care doctors, found. Seventy-four percent said they would withhold care from a patient who would not benefit much so they could provide it to a patient who would benefit more.

Levy took these results and persuaded Eli Lilly and Co., which is concerned that doctors are rationing its sepsis drug Xigris because of its high cost, to give his group a $1.8 million grant. Brown Medical School has appointed an impartial observer to watch for conflict-of-interest, and Levy said the group won't make recommendations regarding Xigris.

It will not be easy to get physicians, hospital administrators, and the public to agree on which patients deserve expensive care and which don't.

Some hospitals, for example, deny Xigris, which costs about $7,000 for several days of treatment, to patients with less than three months to live. But Charles Inlander, president of the People's Medical Society, a national nonprofit medical consumers' organization, said he disagrees with that approach. "What if the person is an official who has a huge and important foreign policy decision to make in the next three months," he said. "Should you still make the decision not to treat them even if they don't have long to live?"

Inlander, who was appointed to the task force to represent patients, said hospital executives shouldn't be the ones to decide how to ration care. Since they must earn a profit, they have an inherent conflict of interest. "My fear is that care will go to people who can pay," he said. "Rationing these days is built around age, race, and economic status. It's done under the table. It's a very important issue to face head-on. But any standards they set up still have to be accepted by the public."

Members of the task force said rationing has occurred for years, but may be becoming more prevalent because the cost of medical care is growing more rapidly and certain resources, such as ICU beds, are dwindling. The number of ICU beds shrank to 52,968 in 2001, a 7.2 percent drop in six years, because they're so expensive for hospitals to run and staff.

"We're making triage decisions all the time about who deserves to be in the ICU," said Dr. Andrew Villanueva, director of the medical ICU at Lahey Clinic in Burlington. He said that often the most care goes to the patient whose family "pushes the hardest."

Villanueva and other physicians in Boston-area ICUs deny that they withhold care based on cost. But they acknowledge that they do consider cost when patients don't have long to live.

Last month, a 75-year-old woman with incurable cancer was wheeled into the ICU at Tufts-New England Medical Center, said Dr. Stanley Nasraway. She had just a few months to live, and to complicate matters she had needed emergency surgery.

Her family wanted aggressive care, including artificial life support, so that's what Nasraway was providing. The danger was that she could develop a life-threatening infection; if she did, Nasraway knew he might have to stop. The treatment is one of the most expensive drugs to hit hospitals in years. "You don't just roll out a $6,800 drug for someone whose prognosis is less than six months, when the adverse effects can be significant, and the patient is terminally ill," said Nasraway, director of the surgical ICU unit and co-director of the cardiothoracic ICU.

The tough question is how to decide which patients get expensive care. Should a patient's age matter? Should doctors use more resources on a terminally ill 12-year-old than on a terminally ill 80-year-old?

Oregon created a list of medical conditions and treatments, ranking them for their effectiveness, cost, and value to society. Preventative care, such as mammograms and prenatal visits, are at the top of the list, while untreatable ailments, ranging from the common cold to end-stage cancer, fall to the bottom. About 700 conditions are on the list and the state pays to treat 550 of those.

But the public was outraged in 1999 when the state refused to pay for a liver-lung transplant for an 18-year-old with cystic fibrosis. The state covered lung transplants and liver transplants but said the combination was not on the list because it's unproven. Public donations eventually raised enough money to pay for the $250,000 operation, but Brandy Stroeder died before doctors could find healthy organs.

Beginning this fall, Levy's group, called the Values, Ethics, and Rationing in Critical Care Task Force, will take a different approach.

The group is gathering data for a series of journal articles, to be published within the next year, defining rationing and discussing models for it. The task force will also conduct focus groups with doctors and nurses and develop a computer program that will allow hospitals to plug in various treatments and compute how many lives their expenditures will save.

The 20-member task force, which Levy organized at the end of last year, also includes Dr. Robert Truog, a Harvard Medical School professor and chief of the division of critical care medicine at Children's Hospital.

But the second step will be far more difficult: How does the group decide how much money saving a life is worth? Levy said that question will be answered by ethicists, economists, physicians' patients groups, and politicians at a series of conferences. Hospitals and doctors can develop rationing policies on their own and don't need federal approval.

Federal officials, debating whether Medicare should cover dialysis, first assigned a dollar figure to a year of life during the 1970s, said Peter Ubel, author of the pro-rationing book "Pricing Life." They arrived at $50,000, the cost of a year's worth of dialysis for a patient with advanced kidney disease. As a result, policy-makers and researchers have used this number to advise doctors, hospital administrators, and state and federal Medicaid and Medicare officials about whether particular treatments are worth paying for.

Ubel, who is at the University of Michigan, believes that number is too low. Based on public opinion surveys, he thinks a year of life is worth closer to $150,000 to $200,000. But, he said, using a hard and fast number is "just so cold." Society should consider emotional factors too, he said, such as whether we want to provide all possible care to veterans because they defended the country.

Many policy specialists say that coming up with national rationing guidelines will be too hard, partly because guidelines become obsolete with new treatments and new studies about their effectiveness for certain groups of patients.

And even though parallels exist between the right-to-die movement of the 1970s, which was ultimately successful, and the rationing movement, Ubel said there's a key difference. The right-to-die movement -- which made the secret practice of withdrawing life support from patients in irreversible comas acceptable -- was a populist uprising about patients' rights.

"We thought, `How can we take people off ventilators?; it's crazy. Now it's commonplace," Ubel said. "Rationing is a much harder sell. The benefits to the public -- lower taxes -- are far more indirect."

Liz Kowalczyk can be reached at kowalczyk@globe.com.

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