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To Hurt and To Heal.

Is Life Ever a Failure? To Hurt and To Heal. University of California Media Extension Center. 45 minutes (Part I) and 60 minutes (Part II). $410 each (VHS)

If I were to imagine the ideal characteristics a teaching videotape on ethical issues in neonatology would have, they would be these: It should be emotionally engaging, as the cases themselves almost always are. It should be in documentary format and give ample exposure to the actual persons involved; my students and I can try to supply the ethical analysis. There should be separate exposure to the interlocking but different perspective of physicians, parents, and nurses. It would be useful to include the frequent tilt of physicians toward aggressive treatment; the emotional roller-coaster experienced by parents, who live with cycles of hope and despair; and the conflicting sympathies of nurses who often feel caught in the middle of dilemmas they understand but feel powerless to resolve. There should be sufficient data to allow discussion of what Nancy Rhoden has described as the "ethics of uncertainty" and which I take to be the central dilemma presented by difficult neonatal cases: the necessity (unless one is going to treat every infant until the situation becomes hopeless) of deciding when to discontinue treatment, knowing at the time one discontinues that there may be some very slight chance that further treatment would result in an infant who is not severely disabled.

Laura Sky, a Toronto filmaker, has produced and directed two videotapes entitled To Hurt and to Heal that come very close to meeting all these characteristics. Since much if not all of the footage was shot in Canada, there is no discussion of the 1984 Child Abuse amendments that play a role of varying and debated importance in U.S. settings; but this in no way diminishes the usefulness of the films. In fact, a discussion of the ethical issues raised by the films would serve as an instructive prologue for a discussion of the moral appropriateness of the U.S. rules.

The two tapes are very different in structure. Part I consists of an engrossing interview with a couple one year after the death of their infant son, Jean-Andre, who was born thirteen weeks premature and then treated in an Intensive Care Nursery (ICN) until he died six weeks later. The parents worried increasingly that their son was being overtreated, but also felt increasingly unable to intervene. The mother describes how she heard contradictory prognoses from different doctors, and began to lose trust in what they were telling her. Toward the end, the parents did request that treatment be stopped, but the doctors refused. The parents report being told by the doctors, "We don't want anyone to ever think we're giving up."

Some of the force of the tape comes from the parents' open and guileless personalities. They are far from being pugnacious or testy; some who watch may feel they erred on the side of forbearance and forgiveness toward the medical personnel. The interview of the parents is essentially unedited and the couple tell the story of the six weeks with almost no prodding. Like many real-time taped interviews, the pace is occasionally less than crisp, but the content is fascinating throughout.

Part II is a well-paced and skillfully edited montage of interviews with parents, nurses, and physicians. The first is an articulate mother of a pretty, young, blonde-haired girl, Alyona, who was successfully treated as an infant for a major cardiac defect and seems delightfully normal now. In one way this case was not well-selected: the parents were told their daughter would either survive the surgery and be normal (20% chance) or she would die. To choose treatment under those circumstances was not morally problematic. It would have been more useful to have filmed a child who weighed 550 grams at birth and, after a prolonged and difficult course of treatment, had made a nice recovery.

By contrast, there follows an extended interview with a mother and father as they care at home for their perhaps six- to eight-month-old son Jordan, who was born at twenty-seven weeks gestational age, suffers from severe bronchopulmonary dysplasia, and is attached at all times to a respirator. It is not clear if he will ever be free of the respirator, and the constant need to suction his tracheostomy chains one or the other parent to his bedside around the clock. The parents' deep ambivalence permeates the interview. Their comments seem nicely unrehearsed. At one point Sky asks, "What's the limit of what you can do?" Almost simultaneously the mother replies, "We've reached it," and the father replies, "We've never reached it."

Perhaps the most arresting interview in Part II is with an ICN nurse who is very conflicted about her work. She complains that parents and nurses have very little say about treatment, that, "I feel angry...I feel like crying, quitting...hitting the doctors, fighting back." She states that, "I love my work [but] sometimes all I do is inflict pain." At one point she does cry as she describes her "constant state of conflict," and notes her "love-hate relationship with the respirator...our machine, the machine of the ICU." Another nurse describes how some doctors are able to be honest with parents while others are not, and explains the great burden these latter put on the nursing staff.

The tape concludes with interviews with two neonatologists, one of whom has lost an infant of his own. Both men seem very sensitive to the psychological and ethical dimensions of their work, and both obviously struggle with the limits of medical hegemony. The younger of the two physicians sounds very nonpaternalistic in his general attitude but comments that, "I don't feel it's right for parents to make the decision alone."

The second, middle-aged physician tells of a case where he initially disagreed with the parents, who wanted to withdraw care, but finally came around to their opinion. Sky softly but pointedly asks him, "Is it ever true that life is a failure?" He comments in his reply that, "Anybody who's pushing for continuing treatment has to accept the responsibility for the long-term outcomes." That is a noble sentiment, but we are left to wonder how much it really means when parents, not physicians, must take home a seriously impaired infant to care for the rest of its life.

The best thing that can be said about these tapes is that they are intellectually honest. No person inteviewed is portrayed unsympathetically, yet the portrayals are rich enough to permit analysis. The ICN nurse in Part II expresses sentiments that are important to hear from an insider, yet ICN nurses to whom I showed the tape felt she was too onesided and appeared "burned out." But burned-out staff are a fact of life in critical care units, and they become burned-out for good reasons. The neonatologists leave one wondering how much parental discretion in decisionmaking they actually allow. I showed both tapes to the interdisciplinary ICN staff at our hospital; both stimulated vigorous discussion and some disagreement, but no one thought there was anything unfair or unrepresentative about the material presented. I count that as strong praise.

Good videotapes on health care ethics should engage the emotions, yet allow for careful conceptual analysis. To Hurt and To Heal succeeds on both counts and should become a teaching classic. Charles M. Culver is professor of psychiatry and the Elizabeth DeCamp McInerny Professor of Medical Ethics at Dartmouth Medical School, Hanover, NH.
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Author:Culver, Charles M.
Publication:The Hastings Center Report
Article Type:Video Recording Review
Date:Jul 1, 1989
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