Medicine, Ethics, and the Law

By Douglas Cohen

Sydney, Austral ia

A DVANCES IN MEDICAL technology allow us to keep alive for longer and longer infants who

are born with gross and noncorrectable malformations or who are excessively premature. Many of these children are clearly going to be severely and perma- nently retarded. Furthermore, as medical care becomes increasingly expensive in terms of equipment, staffing, ongoing care, and continuing support of the physically and mentally handicapped, we are forced to consider the appropriate allocation of available resources. Quite literally, decisions have to be made about life and death. Is it always appropriate to provide all possible support for children with gross and irreparable malformations, and, if so, for how long, accepting that this may mean excluding other emi- nently salvageable children from receiving optimal treatment?

If we take the view that every attempt should be made to salvage a majority of such children, adequate provision must be made for their ongoing care in terms of both financial and emotional support of the family to enable them to cope with the problems that they will have to face.

The alternative is to accept that some discretion may be exercised as to whether all possible treatment should be offered in every case. If so, then we need to have clear guidelines that are acceptable to a majority of reasonable people that allow options to be exercised by parents and doctors that are within the legal framework. ffF-undamental to the legality and morality of all

medical intervention is the requirement for informed consent. This implies that the patient or, in the case of a child, the parents will be provided with sufficient information to enable them to make a rational deci- sion. It must be stressed that in the majority of cases, the decision will be in favor of life. Only in exceptional circumstances can nontreatment resulting in death be considered preferable to life.

From The Children's Hospital, Sydney, Australia. Presented at the 20th Annual Meeting of the Pacific Association

of Pediatric Surgeons, Seattle and Rosario, WA, April 26 to May 1, 1987.

Address reprint requests to Douglas Cohen, FRACS, University Teaching Unit, The Children's Hospital, PO Box 34, Camperdown NS W 2050, Australia.

�9 1988 by Grune & Stratton, Inc. 0022-3468/88/2305-0012503.00/0

Parents have a major but not an exclusive part to play in the decision-making process. In general, they will be morally committed to the continuing welfare of their child. They will enjoy the greatest benefits from their child and will endure the greatest emotional and financial cost. However, it must be recognized that their emotional involvement may understandably impair their judgment, and even with adequate expla- nation, they may not clearly comprehend the long-term consequences of their decisions. In most cases, such decisions will be substantially influenced by the views held by the attending doctor and the way in which these are expressed.

When the decision involves the withdrawal or nonin- itiation of treatment, it is important that it should be adequately supported by the use of appropriate consul- tants or by involving a properly constituted hospital ethics committee.

It is usually helpful to involve the nursing staff caring for such patients in the decision-making pro- cess. Parents may also wish to consult other members of their family or their religious leader. They must always be given every opportunity and ample time to formulate their views.

One further important point needs to be made. It is recognized that there are widely differing views within the community on these emotive issues. It is eminently proper and desirable that informed public debate should be encouraged on the various complex and contentious issues that are involved so that decisions that will be made are likely to have the support of a majority of the community. It is essential, however, to distinguish between informed public debate and the need for privacy in individual instances. The deeply tragic features of these cases and the contentious nature of decisions that must be taken pose great temptations for the media. Sensational reporting cou- pled with emotive expressions of opinion from persons not involved other than by a commitment to some general thesis, however worthy, can harass and impede the judgement of those charged with the duty of compassionate decision making. It also assaults the privacy of parents and families at a time when their burdens are already too much to bear.

It has become reasonably clear who should share in such decision making. An appropriate consensus will almost invariably be reached by a full and free discus- sion between parents and their physician, supported by appropriate medical, nursing, and family consultation.

436 Journal of Pediatric Surgery, Vol 23, No 5 (May), 1988: pp 436-438

MEDICINE, ETHICS, AND THE LAW 437

If the final decision seems inappropriate, there must always be the power for hospital ethics committees or for the courts to intervene. In practice, this should rarely be necessary.

While every case obviously requires individual con- sideration, the basic underlying principles have been well stated in a much quoted judgement I concerning an infant born with Down's syndrome and duodenal atre- sia where the parents had refused consent for surgery. The English Court of Appeal stated, "I t devolves on this Court to decide whether the life of this child is demonstrably going to be so awful that, in effect, the child must be condemned to die." An operation was ordered to relieve the intestinal obstruction. However, the Court went on to say, "There may be cases of severe proved damage where the future is so certain and where the life of the child is bound to be so full of pain and suffering that the Court might be driven to a different conclusion." The door had been left open.

One can define three categories of children in whom the question of nontreatment or termination of treat- ment might be considered.

1. Duty to treat: This category covers the great majority of cases.

2. Duty not to treat: Those for whom there is no hope--infants born dying, eg, those with anencephaly, or destined to die, eg, those with severe forms of myelomeningocele or terminal malignancy.

3. Option to treat: Management will be determined by a number of variables relating to various quality of life parameters such as degree of physical mobility, independence in taking nourishment and maintaining basic hygiene, potential for intellectual and effective participation in human experience, exposure to con- tinuing pain and suffering, and the likelihood of the child receiving reasonable care, attention, and affec- tion.

It must be recognized that nontreatment has dif- ferent meanings to different physicians. To some it means only the withholding of surgery. To others, it means ordinary feeding and comfort, appropriate anal- gesia but no surgery, oxygen, intravenous fluids, or antibiotics. Others, again, would sedate the child heavily and either withhold feedings or institute so- called demand feedings, which, in practice, means almost no feeding. Where limited sustaining treatment is given, there will be indefinite, sometimes prolonged, period of deterioration and possible suffering for the infant and a similar period of psychologic strain for parents, physicians, and nursing staff as they wait for and wish for the child to die. When virtually all treatment is withheld, large doses of sedatives given, and nutritional support reduced, there is an abbre- viated period of waiting for the infant to die.

Ethicists have emphasized that the sanctity with which we endow human life may work to the detriment of those unfortunate individuals whose lives hold no prospect except suffering. 2 It is pointed out that an animal dying slowly and painfully will be mercifully relieved from its misery, while a human being, even with inferior mental capacity in similar painful cir- cumstances, may have to endure his/her hopeless condition until the end and may even have that end postponed by the latest advances in medical science.

While recognizing that euthanasia does occur, it is difficult for most physicians to accept such practices in the real-life situation. It must be clearly understood that, in all developed countries, active euthanasia is equatable with homicide and could undoubtedly be treated by the law as such. Proponents of euthanasia attempt to compare it with abortion, but there are major differences. While abortion is legal in some form in most countries, euthanasia is not. Also, the neonate has a separate physical existence and thus has indepen- dent moral as well as legal claims for care and support. Also, parental acceptance of the infant as a real person is much more developed after birth.

Most physicians prefer to turn to terminal palliative care as an alternative. Admittedly, it is not a perfect substitute. However, doctors would appear to be on sound legal grounds in giving substantial but not lethal doses of analgesics to patients requiring such palliation even though it is known that the effect will be to shorten life. The English courts have laid down that, "The first purpose of medicine is the restoration of health. If this can no longer be achieved, there is still much for a doctor to do and he is entitled to do all that is proper and necessary to relieve pain and suffering, even if the measures he takes may incidentally shorten life. ''3 It is an inescapable fact that we do not strive to save all lives. I do not find this fact discomforting. Provided such decisions are taken on reasonable and logical grounds, it is the manner in which nontreatment is conducted rather than the issue of nontreatment or the withdrawal of treatment that is important.

Criteria have been laid down for the management of children with the severer forms of myelomeningocele." Such infants are fed, kept warm, comfortable, and as free from pain as possible, but they are not tube fed or given antibiotics or offered surgery. More than 90% of this carefully selected group are dead within 6 months of birth.

While it is not feasible to lay down similar guidelines for all children with major noncorrectable defects, I do believe that an intelligent pediatrician aided by caring colleagues can make similar correct decisions and manage them in a comparable way without placing either him/herself or the parents at risk.

438 DOUGLAS COHEN

The best interests of the child must always be the primary consideration.

Finally, one must emphasize the needs of parents whose infants die or are dying, often in the midst of a network of modern technology. The child and the parents must not be depersonalized. There is a neces- sity at such time to give parents, particularly mothers, the opportunity to hold their dying or dead babies. They need a quiet room to spend time privately with their child who cannot or should not have its life

prolonged; to cry, to receive comfort, to pray if they wish, and to hold their child who is too seriously handicapped to continue living.

REFERENCES

1. Templeman, Lord Justice: Re. B. (a minor). Royal Courts of Justice, August 7, 1981

2. Singer P: Sanctity of life or quality of life. Paediatrics 72:128, 1983

3. Devlin, Justice: R. v. Adams. The Times, April 10, 1957 4. Lorber J: Spina bifida cystica. Arch Dis Child 47:854, 1972