Dr. Burstajn's Response:

As a physician observing my own ventilator assisted father's treatment course since Mid-August 2000, many such patients are at risk for developing complications and need a high level of care best provided in hospital settings. The current reimbursement system demoralizes all concerned and risks disregarding patient wishes by rationalizing such care for patients as meaningless. In fact, from what I have observed, even severely debilitated ventilator assisted can have meaningful lives with hospital level comprehensive care. As America ages, we run the risk of becoming a society which treats some lives as more equal than others; unless, given our vast social resources, the reimbursement system changes in the direction of providing more resources rather than less.

Harold J.Bursztajn, M.D.
Associate Professor of Psychiatry
co-Director,Program in Psychiatry & the Law
Harvard Medical School

April 24, 2001, NY TIMES

Roosevelt Island, fanned by the breezes of the East River, is where sick people go to learn how to breathe.

One of them, on a recent morning, was Daniel Morrison, 55, who has multiple myeloma, a type of blood cancer.

Mr. Morrison, a patient at Coler-Goldwater Memorial Hospital, was lying in his bed, breathing through a tracheotomy tube in his throat. His upper body was swollen from complications of his disease, giving his face a ruddy, welcoming look. Next to his bed was a portable ventilator, which was off.

Dr. John Vecchione, head of the mechanical ventilator unit at the hospital, pressed on Mr. Morrison's arm, leaving a fingertip- shaped crater. His patient winced. "Did it hurt?" Dr. Vecchione asked.

"Yes," Mr. Morrison replied, his voice made harsh by the tube. Then his eyes widened and his dry lips parted into a half- smile. "They're making a robot out of me." In the neighboring bed was a man who became paralyzed after falling off a roof. A ventilator the size of a small refrigerator was connected to his tracheotomy tube, whooshing every time it delivered a breath.

Dr. Vecchione walked over and placed his hands on the patient's chest and abdomen, which were not moving in sync.

"This is paradoxical breathing," Dr. Vecchione said. "It is a sign of neurological injury."

All the patients in this unit have serious problems: emphysema, heart disease, spinal cord injury. Most will never again breathe independently. Yet, with ventilators, many will live for months or longer.

As the population ages and medical technology gets better, the number of patients in the United States receiving long-term mechanical ventilation has been rising, from 6,000 in the mid-1980's to at least 12,000 and perhaps 20,000 or more today, experts on critical care say.

The number of centers caring for these patients has also grown, from about 100 in 1990 to 240 today.

Their care is expensive; usually tens of thousands of dollars per patient per year. Some patients eventually recover to the point that they do not need ventilators, but doctors say the weaning process is tricky. Although some standard tests help determine when a patient is ready to be weaned, no perfectly predictive criteria exist, said Dr. Robert Kaner, head of the ventilator management team at New York Presbyterian.

Dr. Vecchione said the weaning process at Goldwater started from Day 1. In a "weaning room" with large bay windows and a view of an industrial section of Queens, respiratory therapists with hand-held computers closely monitor patients, checking breath volume and rate, pressure support and oxygen concentration.

"The longer they're on the vent, the more difficult it is to wean," said Dr. Vecchione. "Just like when an arm is in a cast. Once you take the cast off, the arm is weak."

He estimated that about one-third of his patients would eventually come off the ventilator, at least for some period of time.

Experts say that mechanical ventilation itself is associated with lung complications, including pneumonia and adult respiratory distress syndrome, a type of lung injury.

The faster the patients get off mechanical ventilation, and the smaller the size of their ventilator breaths, the better they are.

Weaning depends on many factors, including proper nutrition, nursing and physical therapy to prevent muscle contractures in bedbound patients, said Dr. Arthur Slutsky, an expert on mechanical ventilation at St. Michael's Hospital in Toronto.

There are also psychological factors. "If you've been on a ventilator for months, and it's lifesaving, you can imagine the fear and anxiety of getting off," Dr. Slutsky said. "Some people panic."

For some patients, weaning is impossible.

Amadalla Ireibi came to Coler-Goldwater two years ago after injuring his spinal cord in a car accident. He became paralyzed and required a ventilator to breathe.

"Everything you get here is very good," said Mr. Ireibi, 45. "I don't like it because it's the hospital, but the service is O.K."

Hanging close to his head was a snakelike tube, like the flexible stem of a reading lamp, which he blows into to call his nurses.

At one time, he used to spend three to four hours a day off the ventilator, and last summer he was able to go home to Brooklyn to visit his wife. Occasionally, he went to Manhattan to see friends or to conduct business. But he has been getting weaker and now uses the ventilator full time.

Down the hall, Larry Homolka, a 59-year- old Manhattan artist with advanced muscular dystrophy, was hooked up to a ventilator full time.

"I used to be productive every day," Mr. Homolka said, recalling the days when he lived in a four-story walk-up before a bout of pneumonia landed him at Goldwater six months ago. "I always found ways to do things."

For a while, he was able to get around the hospital in a motorized wheelchair with a portable ventilator, but since he started requiring supplemental oxygen, that privilege has been stopped. Regulations deem it a fire hazard.

"I feel like I've gone from a relatively independent to a very dependent situation," Mr. Homolka said. "Now I don't know what I'm going to do."

Though Coler-Goldwater, which started as a tuberculosis and polio hospital in 1939, has been treating ventilated patients for decades, most such centers in this area were started in the 1990's. Experts trace their growth to Medicare changes in 1983, when hospitals started being reimbursed based on each patient's diagnosis, rather actual treatment costs.

Under this payment system, it was unprofitable for hospitals to keep ventilated patients in intensive care units for more than about three weeks.

But some kinds of hospitals were exempted from this payment system, including long-term care centers, many of which started providing higher levels of care.

Hospitals for patients on ventilators were reimbursed their actual costs, but they also received government bonuses for operating below their projected costs. "There was an incentive to dump the sickest patients," said Edward Kalman, general counsel of the Association of Long-Term Hospitals, a consortium of 72 hospitals.

Many of these patients ended up at not-for-profit centers like Coler- Goldwater.

With the 1997 Balanced Budget Act, caps were placed on Medicare reimbursement to these hospitals. Now, the Health Care Financing Administration, which administers Medicare and Medicaid, is planning to switch long-term centers to the diagnosis-based payment system. While some hospitals welcome the change, others fear it will lead to cutbacks in an industry they say still needs to grow.

Tom Scully, executive director of the Federation of American Hospitals, said officials needed to find a payment system that would keep the long-term centers viable and operating. His group, a trade association, represents about 6,000 hospitals and long-term care centers.

Meanwhile, some health experts question whether chronic ventilation is the best treatment for many of the people who receive it. In 1997, a University of Chicago study of 133 patients at a chronic ventilator center found that 77 percent had died and only 8 percent were functioning independently after one year.

"These individuals endure months of intensive medical management and personal discomfort," the researchers, led by Dr. Shannon Carson, wrote in The American Journal of Respiratory and Critical Care Medicine.

But others say the prognosis is not so dismal. Dr. David Scheinhorn, director of research at Barlow Respiratory Hospital in Los Angeles, said recent research showed that 38 percent of 1,100 patients studied were alive after a year. The outcomes are poor, he said, but not as bad as some might think.

"No one in our society is willing to put Grandma out on an iceberg because she's no longer contributing," he said. "Somebody needs to take care of these people."