Life-prolonging and life-terminating treatment of severely handicapped newborn babies: a discussion of the report of the Royal Dutch Society of Medicine on "Life-Terminating Actions with Incompetent Patients: Part I, Severely Handicapped Newborns."

• Author: Jochemsen, Henk

In 1988 the KNMG (Royal Dutch Society of Medicine) published a discussion paper written by a special committee about life-terminating actions with incompetent patients entitled "Part 1: Severely Handicapped Newborns."(1) All those involved in medicine, medical ethics, and medical law were invited to submit their reactions. In 1990 a more definitive report(2) was published in which the committee had integrated the reactions received as far as they were considered to be an improvement. This report is the first of a number of articles dealing with incompetent patients; publications about comatose patients and other categories of incompetent patients will follow. The ethical acceptability of terminating medical treatment and life-terminating actions for newborns with severe disabilities is the central issue in the first report.

The aim of this article is to give a short summary of the KNMG report, based on the report's own summary, and discuss the position it defends.

Summary of the KNMG Report

In the report the phrase life-terminating actions is defined as "all acts of physicians aiming at the death of an incompetent patient, irrespective of the question whether it concerns the application of euthanatics, paintreatment, withholding or withdrawing a treatment or anything in between." Because the definition of euthanasia in the Netherlands implies the free request of the patient, the term euthanasia is not used for life-terminating actions with incompetent patients.

In the present practice of neonatal intensive care, life-terminating actions almost exclusively consist of the withdrawal of life-sustaining treatment or care. The discussion paper of 1988 mentions ten cases of actively terminating the life of a newborn (i.e., zero to three months) by the application of euthanatics. By contrast, there were about three hundred cases of life-terminating actions by withdrawal of life-sustaining treatment. In the final report these statistics are not mentioned.

Decisions about the termination of a life are generally decisions made by a team of physicians; the influence of parents and nurses is relatively small. The main reason for terminating the life of a newborn with severe disabilities appears to be the prognosis that the baby almost certainly is not viable or almost certainly will have an unliveable life. However, the criteria for determining when life is "unliveable" differ from one hospital to another and from one physician to another, both with respect to medical and nonmedical criteria (e.g., psychological factors and ethical considerations of the physician, situation of the parents).

The report defends the moral stand for life-terminating actions when they concern either the forgoing of certain treatments or the active killing of a baby. The latter is considered acceptable only in situations when life-prolonging treatment is terminated in anticipation of the death of the baby, but contrary to expectations the baby doesn't die. In such cases it can be morally defensible to administer euthanatics, according to the report.

In the performance of life-terminating actions, certain "requirements for careful medical practice" should be met. In all cases there should be certainty, according to general medical practice, about the diagnosis underlying the prognosis. As long as this certainty is lacking, the committee considers it permissible to keep the patient alive by artificial means, in spite of the medical-ethical rule in dubio abstine (in case of doubt refrain from treatment), provided the treating physician is willing to forgo life-sustaining treatment and possibly terminate the patient's life if the final prognosis appears to be that the condition is terminal. This prognosis should not just be based on personal experience and intuition, but it should also correspond with the statistics available.

With respect to the prognosis that there is no real chance to survive, more consensus within the profession is desirable. The unliveable life prognosis should be defined more precisely because of its more subjective character. In this regard the profession should develop a generally accepted frame of reference that will enable the determination of the character, seriousness, and extent of the newborn's expected disabilities. The definition of what should or should not be called an unliveable life is not merely a task of the profession. According to the committee, society at large should participate in this task.

The application of such general criteria should, in individual cases, always leave the necessary liberty to do justice to those concerned, especially the parents. For a responsible decision about life-terminating actions, a careful decision-making procedure is also considered necessary. Especially the opinion of the parents should be an important element in weighing the interests. Also, nurses should be more involved in the decisionmaking.

Particularly if the parents and the attending physician do not agree, consultation with an experienced and independent colleague by this physician is considered indispensable. The responsibility, however, remains with the attending physician. Also, in view of good terminal care the life-terminating action should be performed by the physician and should be done lege artis. Therefore, according to the committee, the information about the necessary prescriptions should improve. A final requirement for careful ,medical practice is for the attending physician to write an account of the facts and considerations leading to the decision.

With respect to the concept of medically futile treatment, the committee notes a clear distinction in interpretation between physicians and lawyers. According to physicians, the unliveable life prognosis can make life-sustaining treatment medically futile. According to lawyers, only strictly medical factors may play a role in the judgment of whether a treatment is medically futile. According to the committee, it is necessary to resolve this difference in opinion as soon as possible, since it hinders the possibility of controlling life-terminating actions.

A second difficulty is the lack of a guarantee that a physician who terminates the life of a patient according to the requirements will not be prosecuted. As long as the government does not provide such a guarantee, the committee considers it unrealistic to expect that physicians will correctly record the cause of death in cases of the termination of a patient's life. The committee considers it desirable to take life-terminating actions out of the sphere of criminal law. Instead, it proposes a requirement of an internal evaluation before such an action is performed and the possibility of review by a medical disciplinary court after the action.

The Central Moral Problem

This reaction to the KNMG report will concentrate on a central moral problem in the report. The question is whether there is a moral difference between withholding or withdrawing life-sustaining medical treatment that results in the patient's death and the active termination of the patient's life by means of euthanatics. Both cases concern seriously and incurably ill people.

Life-Term ina ting Actions

The KNMG report gives the following definition of life-terminating actions: "all acts of physicians aiming at the death of an incompetent patient irrespective of whether it concerns the application of euthanatics, pain-treatment, withholding or withdrawing a treatment or anything in between." This definition of life-terminating actions in itself already implies some very important choices. Withholding or withdrawing life-sustaining treatment is classified together with active killing if both actions aim at the death of the patient. So, when the report speaks of withholding or withdrawing a treatment as a life-terminating action, apparently it has to be presumed this is done with the intention that the patient die.

Furthermore, it is stated (though this is in the appendix that deals with the criticism...