Neonatology and the Rights of Families



Pediatrics 2003;111:672-674.


William A. Silverman, MD
Key words: health care, medical economics, neonatology

Medical care the world over stands on the brink of a huge expansion of investment in health care in two possible directions: either need-driven coordinated expansion of labor-intensive continuing care and health maintenance for whole populations.or profit-driven independent expansion of capital-intensive technical repair, as an ultimately false alternative to continuing care, directed at profitable sub-groups in the population.

- Julian Tudor Hart 1


Several years ago, Daniel Callahan (Director of The Hastings Center: founded in 1969 for the study of value and the sciences) examined the implications of a frequently noted observation: "No matter how much money is spent, and no matter what the health gains, they never seem enough." 2 This worrisome image of insatiable demands led him to ask some fundamental questions about the "appropriate goals of medicine." Callahan was interested to see similar issues in debates about the environment, and, he concluded, there is a "need for a view of medicine that would be at once equitable and sustainable." Despite all of its excitement, he opined, modern medicine has become "increasingly and painfully unaffordable." "Just as we need a sustainable environment, we need a sustainable medicine."

Conservationists have argued that nature must be protected to serve human needs. With wise management of natural resources, according to this line of reasoning, there is no reason to expect that these assets will not be available to serve human ends indefinitely. However, as Callahan noted, the "belief of scientific medicine---like the corresponding belief of many conservationists---that nature is infinitely plastic and repairable, that technology can solve the problems of technology, and that progress can move forward in a straight line should now be seen as.patently self-deceptive." Callahan recommended against adopting "the kind of conservationism that sees nature as the kind of stuff for human manipulation, even in the name of health." In the end, he predicted, "medicine will need to find a benign equivalent of the conservationists' view of nature." And, he stressed, medicine should "adopt their long term perspective, recognizing that the great imperative is sustainability over generations, not just for the next few years."

Our country's $1.3 trillion-per-year disorganized approach to the provision of health care provides the most apposite current example of un sustainability. And there has been no dearth of critics of the confusion that resulted from a series of historical accidents. For example, the American job-based form of health insurance began fortuitously during World War II when wages were frozen by government edict. This stricture led employers to offer medical benefits in an effort to attract scarce employees. J.D. Kleinke, an economist, has recently charged 3 that this and similar unplanned events were largely responsible for the beginning of "a pernicious effect on consumers because it denies them choice and uncouples them from any awareness of the costs of treatment." The economic behavioral effects of the American arrangement, Kleinke asserts, are "deeply perverse and go a long way in explaining why the United States spends far more per-capita on medical care than any other nation in the world."

As currently structured, Kleinke charges, health care in the U.S. "is so rife with economic conflict that every attempt to simplify it actually complicates it further." And American doctors have been rendered relatively powerless amid dozens of layers of health care administration. Moreover, control is often in the hands of patients and their families, few of whom behave rationally during a medical crisis. "Even if physicians' clinical behavior could be analyzed and modeled fairly," Kleinke continues, "the sheer irrationality woven into the experience of major disease or injury produces chaotic perturbations in every patient's action and reaction."

"The creation of a standard benefits plan for health care in the U.S.," Kleinke asserts, " would result in enormous economies of scale." Unfortunately, he notes, "legions of benefits-consultants, brokers, claims-processing software companies, reimbursement-vendors and entrepreneurs of all shapes and sizes divert billions of dollars [every year] that are earmarked for medical care, as they preside over the oxymoron that is the U.S. health care 'system'."

A notable example of the conspicuous and eventually unsustainable disconnect between input and outcome is found in neonatal medicine. This relatively new specialty invented itself in the 1960s and grew very rapidly, particularly in the U.S., with no thought given to overall limits and goals. And the expense of neonatal intensive care has grown enormously (the outlay of this for-profit industry in our country was estimated in 1992 at $5.6 billion per annum 4 ). Now that the very smallest, marginally-viable neonates are rescued routinely, troubling questions have surfaced about the long term biological and social consequences of the immediate technical triumphs. 5 For example, parents, struggling to rear severely retarded children born after extreme prematurity, protest 6 that they were "made to feel like criminals for questioning" heroic medical treatment. Doctors are "out of touch with the harsh realities of our children's lives," they complain. "Where," they ask, "is a description of the months or years of grueling hospitalization with the associated gastrostomy tubes, jejunostomy tubes, and fundoplications; the tracheostomies, shunts, orthopedic, eye, and brain surgeries; hyperalimentation, oxygen tanks, and ventilators?" Similarly, medical accounting fails to recognize the frequency of emotional and financial breakdown in families caused by the extreme burdens of caring for developmentally retarded children with superimposed severe medical problems.

In addition to these disturbing long term results of unrestrained rescue, it is also clear that we have too many highly trained experts and an oversupply of technical resources when compared with other developed countries. 7,8 Some leaders in neonatology are now asking "Is more neonatal intensive care always better?" A way forward is suggested by a declaration in the Netherlands, 9 where it that has been decided on the basis of humane concerns, to stop active intensive treatment of the most immature infants (those born before 25 weeks' gestation.).

Callahan concluded his discourse with the assertion that a "sustainable medicine is necessary not simply because we cannot afford any other but also because it could help displace the goal-less, progress driven, never-happy medicine that grew out of [its] embrace of modernism." We need to understand "the social meaning of medicine and health care," he declared, "and the relationship of medicine to the cultures of which it is a part." In this regard, Mr. Justice Kirby of Australia also made some relevant comments (concerning the need to slow the headlong rush of modern medicine), 10

"My hope is that it won't be the epitaph of our generation that people will say: 'Here was a community which developed the most amazing, dazzling fields of science and yet proved themselves so indifferent or incompetent, that they didn't address the serious social and ethical consequences of what they were up to.' "


1 Hart JT. Two paths for medical practice. Lancet 1992;340:772-775.

2 Callahan D. False Hopes . New Brunswick, New Jersey: Rutgers University Press, 1999.

3 Kleinke JD. Oxymorons: The Myth of a U.S. Health Care System. New York: Jeffrey-Bass, 2001.

4 Winslow R. Infant health problems cost business billions. Wall Street Journal May 5, 1992.

5 Jobe AH. Predictors of outcomes in preterm infants: Which ones and when? J Ped 2001;138:153-156.

6 Culver G, Fallon K, Londner R, Montalvo N, Vila B, Ramsey BJ et al . Informed decisions for extremely low-birth-weight infants (letter). JAMA 2000;283:3201.

7 Lorenz JM, Paneth N, Jetton JR, den Ouden L, Tyson JE. Comparison of management strategies for extreme prematurity in New Jersey and the Netherlands: Outcomes and resource expenditure. Pediatrics 2001;108:1269-1274.

8 Thompson LA, Goodman DC, Little GA. Is more neonatal intensive care always better? Insights from cross-national comparison of reproductive care. Pediatrics 2002;109:1036-1043.

9 Sheldon T. Dutch doctors change policy on treating preterm babies. BMJ 2001;322:1383.

10 Editorial. What rules for embryology? Manchester Guardian Weekly 7 February 1981.


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