Intruding in private tragedies
Intruding in private tragedies
Abstract and Keywords
This chapter presents a 1988 commentary on the growing public interest in decisions involving the fate of very small or severely malformed neonates. It says that parents' agony over treat or let-be decisions should remain within the circle of family and family doctor.
The American system of bioethical committees… must be the ultimate cop-out: An exercise in buck-passing…The most important people in the negotiations, namely the baby and its parents seem to have the least influence on the decisions.
In the recent past, a treat-or-let-be decision after the birth of a very small or seriously malformed baby was made quietly by the parents guided by information provided by their doctor. Somewhere along the way from then to now, and with increasing frequency, these private agonies have been transformed into public spectacles. The sensational trial of Leonard Arthur,2 several years ago, on a charge of attempted murder was a revealing example of the noisy entry of new players on the neonatal scene. Self-appointed moralists demonstrated that they were now prepared to play a highly visible and pre-emptive role in treat-or-let-be deliberations.
Public opinion at the time of the trial at Leicester agreed with the jury in rejecting the uninvited intrusion. A MORI poll3 indicated that 86% (of 1953 respondents) agreed that if a doctor, with parents’ consent, allowed a malformed newborn baby to die, he should not be found guilty of murder. There was little support for doctors alone (4%) or law courts (2%) to have a say whether a markedly handicapped baby lives or dies. Notwithstanding public support for parents’ primary role in these difficult decisions, the pleas of those directly involved seemed to be drowned out in the cacophony of voices claiming to speak for the extremely small or malformed neonate. Loud arguments about intervention are now made frequently in court rooms, on printed pages, and in television broadcasts. Melodramatic aspects of family tragedies are exploited shamelessly—especially in the United States.
A warning about the oppressive influence of meddlers was issued several years ago by the New York Court of Appeals.4 , 5 In a case involving parents who elected conservative rather than surgical treatment for their infant born with major neural tube defects (spina bifida, hydrocephalus (p.24) and microcephaly), the court affirmed that ‘a most private and most precious responsibility is vested in parents for the care of their child’. The ruling accepted the premise that the choice to forego surgery (after consultation with neurosurgeons, social worker and clergy) was made with love and thoughtfulness. A lawsuit to displace the primary responsibility of these parents was dismissed as an ‘offensive action’.
The hospital-based ‘infant bioethics committee’6 is charged with the task of resolving inevitable disagreements that arise when trying to decide whether or not to forego life-sustaining treatment for a severely compromised neonate. On the surface, the democratic process does seem a reasonable way out of the ethical difficulties: After a full review of the facts, committee members from several disciplines vote by secret ballot. But this facile solution is an example of bioethical reductionism: It reduces complex ethical dimensions to simple processes and procedures. Churchill reminds us7 that any decision, no matter how clearly justified in terms of ethical theory, must be persuasive to the person who is the moral agent. ‘The assumption that ethical decision-making can be approached as a standard exercise,’ he notes, ‘ignores the vast range of human beliefs, sentiments and traditions which make the moral problem what it is, especially when these beliefs, sentiments and traditions resist precise articulation or formulation as problems to be solved.’
The shift of decision-making power from parents and personal doctors to infant bioethics committees results in a dilution of responsibility for decisions (pp. 53–57). The ‘move is disturbingly close to the approach used by modern multinational corporations (‘all but the most elementary decisions require information, specialised knowledge or experience of several or many people’).8 Malign consequences that have occurred as the result of decision-by-committee in the business world are well documented. Where is the evidence that would make us believe the fate of families with a malformed newly-born infant should be left to the ‘vicissitudes of group dynamics among doctors, lawyers, ministers, ethicists and representatives of handicapped groups who bear no consequences’ of the treatment decision?9
Who speaks up for the right to a humane and dignified death? A mother of a malformed infant who died at three months of age argued10 that it is inappropriate for strangers to be part of the agonising treat-or-let-be decisions. Some events in life are simply so personal, so private that compassion and good sense demand they be left within the circle of family and family doctor. Parents, she advised, should be left to work out their enormous difficulties as best they can. Alone.
Fourteen years after the agonising affair in Leicester (noted above), an equally wrenching life-and-death drama was enacted in the US. The (p.25) American incident took place in 1994 at East Lansing, Michigan, after a doctor’s wife went into preterm labour at an estimated 25–26 weeks of gestation.1 The staff neonatologist conferred with the parents before delivery, and explained that intensive measures would, very likely, be necessary to rescue the expected fetal-infant. Both parents feared that heroic intervention would subject their extremely premature baby to prolonged and unacceptable pain and suffering. They requested that resuscitation not be attempted at the time of birth.
A male infant was delivered several hours later by Caesarean section; gestational age was estimated at 25 weeks, birthweight was 780 grams, and the newborn was described as ‘lifeless and dark.’ A physician’s assistant intubated the baby, began mechanical ventilation, and brought him to the neonatal intensive care unit where he was placed on a ventilator. When the parents came to the unit and saw that intensive intervention was underway, they asked to be left alone with their son. The professional staff left the room. A short time later a nurse reported that the father had disconnected the ventilator and the mother was holding her moribund baby. The staff elected ‘not to intervene at this time;’ and the infant died a short time later, while in his mother’s arms.
The father was arrested and charged with manslaughter. In January 1995, he was tried and quickly acquitted on the first ballot taken by the jurors.2 A law student, who served as the jury foreman, later said that the disenfranchisement of the parents, disclosed in the trial, left her frightened at the thought of ever having children.
Modern medicine’s fearsome power, recognised by the Michigan jury, is not confined to the field of neonatology. For example, one survey of the hospital experiences of seriously-ill patients revealed that doctors frequently failed to comply with their patients’ express wishes not to be resuscitated.3 A programme was devised to improve communication about the preference to forego cardiopulmonary resuscitation. The experimental plan was tested in a randomised trial (p. 182). The hopes for improvement were not realised: there was no important increase in physician–patient agreement about ‘do not resuscitate’ orders. The disappointed researchers were left to wonder ‘what elements of context and culture of health care might have to be altered, to ease suffering… and avoid inappropriate treatment?’ This anxiety about present-day medicine’s never-say-die zeal is completely justified. Note, for instance, that the policy for mandatory resuscitation of cardiac arrest by the emergency medical service in one American city,4 excludes only persons who have been decapitated, those who exhibit rigor mortis, or have signs of physical decomposition!