Is It Worth the Cost? : Some Ask If We Should Spend So Much Time, Money Prolonging the Lives of Dying Children
At 4 pounds, they are good-sized babies by today’s standards. But they are not healthy babies.
Their lips and limbs are bluish, their skin ashen from lack of oxygen, their blood so deprived it spurts blue-black when a vein is opened.
There is no question these babies are dying of heart-lung failure, and that makes them perfect candidates for ECMO, the controversial bypass machine.
For infants who need the machine, ECMO (Extra Corporeal Mechanical Oxygenation) can spell the difference between life and death.
Without ECMO, 90% of these babies die. With it, 90% live.
The question is: At $8,000 to $9,000 a day--or three to four times the cost of conventional hospital care--is it worth it?
As the technology becomes available to save more children’s lives, the larger issue becomes what moral obligation exists to use it.
Bioethicist Daniel Callahan calls this the “moral imperative” of medical progress: What can be known ought to be known, and what can be done morally ought to be done.
“Yet the seductive, compelling power of technology lies at a deeper level,” says Callahan, director of The Hastings Center, an ethics think tank in Briarcliff Manor, N.Y. “The real power of technology lies in its capacity to turn what seems fixed and unavoidable (death) into the malleable and contingent, open to radical change. . . . “
The most basic of all needs--the need to live--gives health care its powerful claim on resources. And that claim can be especially strong when it comes to society’s smallest, weakest and most innocent citizens--its newborns and children.
But at what price? The emotional costs of prolonging life are high for children and caretakers and can be counted in the number of sick children who live out their lives in U.S. hospitals.
The financial costs are growing at such a rate that ethicists as well as economists are beginning to ask whether the time has come to consider limiting patient care under certain conditions. Such is the case in Oregon, where the Legislature is struggling to implement a formula for reducing Medicaid care. In Europe, limiting care for very sick babies is already common practice.
In this country, says Dr. Sol Bernstein, chief of staff of County-USC Medical Center, “The allocation of scarce resources is the biggest issue we face. Clearly, there are not enough organ donors available, there are not enough intensive-care beds. . . . But as a nation, we continue to operate as if we have all the resources in the world when in fact we are running out.”
Health care costs will consume 37% of the nation’s gross national product by 2030, President Bush has warned. Last year alone, the United States spent $671 billion on health care. Of that, $2.6 billion went to pay the bills of newborns who needed intensive care, according to the American Hospital Assn.
For the most part, that money is readily spent. Children, especially infants, occupy a special place in society. They are cuddly bundles of unknown potential. And the particularly wrenching experience of losing a baby, says Callahan, is a poignant symbol of the very meaning of “premature death.”
The infant mortality rate for babies in the United States is worse than that of most other Western and developed countries.
Still, the number of very low-birth-weight babies who live continues to rise.
Before 1975, just 6% of very small, often premature, babies survived. Today, 80% to 85% live, according to a recent article in the New England Journal of Medicine, which reports that “all too often” these survivors suffer disorders like cerebral palsy, seizures and other neurological damage.
Callahan calls such babies “disasters of good intent.”
Because the technology exists to save extremely tiny babies and very sick children, Callahan and other ethicists ask, is there a moral duty to use it?
By all means, says James Atkinson, the pediatric surgeon who brought the high-tech ECMO program to Childrens Hospital of Los Angeles four years ago.
“But,” he cautions, “be prepared to turn off the technology the moment it becomes clear there is no hope for recovery.”
ECMO babies arrive at the hospital by helicopter. Most are “almost dead,” Atkinson says. Because many suffer heart attacks while they are being evaluated, they are usually hooked up immediately to one of the hospital’s four $40,000 bypass machines, elaborate pumps that do the work of heart and lungs.
“Our policy is to resuscitate them and then do a careful assessment within 24 or 48 hours,” Atkinson says. Those without hope--5% to 10% of more than 200 ECMO babies the hospital has treated--are disconnected and quickly die. “Our goal is not to deliver hopeless care just to produce a vegetative individual.”
But with ECMO’s high costs and intensive nursing requirements--a nurse for each baby and one for each machine--even a two-day tryout may be a waste of money, critics say.
“For the cost of one of those ECMO beds, I can care for two or three other sick children,” says Sherry Hirschberg, nursing coordinator of the toddler wing of Childrens Hospital. “There is a question of how far we should support such loss leaders when our other needs are so great.”
“Eighty percent of the problems we face with ECMO are political,” Atkinson concedes. But the ethics of the program, he adds, are clear-cut. “We’re saving babies to lead healthy lives, to be contributing members of society. And we’re doing it in three or four weeks, instead of the three months other kids spend in conventional hospital care.”
Officially, there is no rationing of health care in this country. Unofficially, it happens all the time.
“Before I can even order tests on patients, it has to be cleared by somebody in financial services,” says one pediatrician, who practices in several Los Angeles County hospitals. “When we see somebody in the emergency room, I have to look at their insurance to see how much we can treat them. Can I order all the tests I need to find out what’s wrong? Often, I cannot, and that child pays the price.”
Nurses complain routinely that patients are sent home when their insurance companies want them to leave, not when they are well. “We are forced to send sick kids home all the time,” says nurse Hirschberg. “The beds don’t cool off before they’re filled with even sicker kids.”
In intensive-care nurseries, babies with no medical hope of recovery are occupying high-priced beds for weeks, even months. At the same time, parents are telling Congress how their dying children have no access to care.
In June, a well-heeled Washington couple testified that $2 million in medical insurance was not enough to cover their child’s expenses. Gregory Hauptman, a lawyer, and Dr. Joan Conry, a pediatric neurologist, described to the Senate Labor Committee how quickly their resources were consumed by their 2-year-old daughter’s medical bills.
Leann, the youngest of the couple’s three children, was born with the rare degenerative bone disease osteopetrosis.
Fourteen months in intensive care used up all of Leann’s benefits. Despite help from Medicare and donations of experimental drugs, her parents face hundreds of thousands of dollars in medical bills, Hauptman says.
“Medical resources are in short supply. Everybody knows it and everybody says it,” says Dr. Miriam Wilson of Los Angeles County-USC Medical Center and Women’s Hospital. “But in the hospital setting, the staff will do everything they can to save a child. The intent is to save the patient, despite the eventual prognosis, despite the cost.”
The state of Oregon could be the first to put an end to that intent if it wins federal approval for the nation’s first health care rationing plan. Applying the Oregon Formula to all Medicaid services, the state would allocate state-of-the-art medicine to the state’s poor according to the principles of net benefit.
Theoretically, the plan should offer the greatest benefit to the greatest number of people. But in practice, critics say, it will be ethically tricky to apply and prove no friend to mothers and children who are now the primary beneficiaries of that state’s Medicaid program.
For example, Oregonians without private insurance who have terminal cancer or end-stage AIDS would be given “comfort care” but nothing more. There would be no state money for treating the common cold or hemorrhoids or for saving premature babies who weigh less than 17.5 ounces.
According to a spokeswoman for Oregon’s Health Care Commission, ailments that would be excluded include those who would get better on their own and those unlikely to get better at all.
William Goldie, a pediatric neurologist and chairman of Childrens Hospital’s ethics committee, is among a growing group of physicians who favor “something like” the Oregon plan, but with careful medical supervision.
“There is no question that people today don’t receive the ultimate medical care because of rationing, but it’s a random and abstract rationing,” says Goldie. “The Oregon Formula holds out some hope for a rational and logical plan.”
Among the ethical dilemmas that might be avoided under the Oregon Formula are the sort faced daily by Goldie and his colleague, Dr. Antonio Galvis, in the hospital’s intensive-care units. “I’m so used to dealing with the life-or-death issues, the withholding of support, the DNRs (Do Not Resuscitate orders) . . . but I am always, always in personal conflict,” says Galvis, “when we are certain there is no hope but maintain a patient for months and months, knowing we must provide first-class care.
“Every time I tell a family their little child is going to die, a small part of me dies too,” says Galvis. “But I do not believe that the intensive-care unit is where they should come to die. These beds should be for the children who will live, those who have a chance.”
