CCAR RESPONSA
Contemporary American Reform Responsa
77. Dangers of Surgery Correcting Congenital Craniofacial
Malformations
QUESTION: A twenty-six-year-old man was born with
Apert’s syndrome, a disorder which is known as craniofacial dysostosis. This illness is found in a severe form in my patient, Albert. His strange appearance frightens children. He can not chew food properly. His nasal airway is small, so he can not breathe through his nose. He is disturbed and he suffers from many colds, etc. due to poor breathing. Surgery would correct some of these problems and improve his appearance. A social service agency favors surgery and would pay for it.
It is not entirely clear whether this individual wishes to have the surgery. His
intelligence is limited as he is educably retarded. His mother is very much dependent on him for companionship and transportation, and has cared for him all his life. The risks of the operation are formidable and might lead to blindness, meningitis, seizure disorder and coma, or even death. The issues in this situation are the following: Albert, due to his limited intellect and his long standing physical deformity, may experience little impact from this extensive surgery and its attendant risks. In addition, the potential sacrifice and suffering the mother will experience are also disquieting. Finally, the expenses to achieve this result will be tens of thousands of dollars, and perhaps more if there are complications. Is it appropriate to proceed? (Dr. L. Hurwitz, Pittsburgh, PA)
ANSWER: A number of different questions have been raised by this
case. The first is the extent to which one should risk someone’s life for an operation whose results, because they are principally psychological, will not be known in advance. The social agency, which will pay for the extensive surgical procedure, feels that it will be beneficial. However, the patient and his mother have their doubts, each for different reasons. Jewish tradition indicates that one should not wound one’s self or endanger one’s life. In fact, it stipulates that an individual should remove all possible dangers from himself (Deut. 4.9; 4.15; Ber. 32b; B. K. 91b; Yad Hil. Rotzeah Ushemirat Hanefesh 11.4; Hil. Shevuot 5.57; Hil. Hovel Umaziq 5.1). However, later responsa agree that even if there is considerable risk in the surgical procedure, it may be taken if there is a small chance that a cure will be effected (Jacob Reisher, Shevut Yaakoq III, 75; Hayim Grodzinski Ahiezer, Yoreh Deah 16). The recent Chief Rabbi of Israel, Untermann, sanctioned such an operations solely on the grounds that the chance of success was greater than possible failure (Address to the Congress of Oral Law, Jerusalem, August, 1968; several articles in Noam have also discussed this matter (Vol. 12, 13, etc.).
The patient may, therefore, undergo the operation even if the risk
involved is considerable as long as some medical benefit is likely.
The second
question deals with of the relationship of mother and child. What role should this play in our decision? We shall view this first from the point of view of the child’s continued responsibilities to her parent. There is considerable discussion in the traditional literature of this matter. It deals with two aspects of a child’s responsibility towards parents. One is the fiscal responsibility. This rests upon children generally, but of course, not in this case. The other aspect deals with the emotional dependence of the parents upon the child. Conflict in this area often became acute when an adult child moved away from his parents for marriage or another reason. Our tradition stressed the child’s independence through comments on Biblical tales which dealt with this theme, as for example Genesis 2.24, “Therefore shall a man leave his father and his mother…,” and on God’s command to Abraham, “Get yourself out of your country and from your family and from your father’s house.. ” (Gen. 12.1). The rabbinic interpretation of these citations provided for independence of the child from his parents, although the rabbis felt the need to defend Abraham (M. Ber., 6.4; Genesis Rabbah, II, p. 369). The medieval Sefer Hassidim stated that any son who had made financial provisions for his parents was free to move (#564, p. 371). When dealing with a sick parent, or one who was mentally incapacitated, there was a difference of opinion between Maimonides and Rabad. Both agreed that the son may need to leave the parents, but Rabad felt that the obligation of emotional support remained with the son (Derishah to Tur Yoreh Deah 240). The Shulhan Arukh followed Maimonides in this matter (Yoreh Deah 240.10). Clearly the son remains responsible for the physical and mental welfare of his parents unless an extraordinary difficult situation makes this impossible.
The normal situation of a child leaving a home in order to marry presents
potential problems. It is a mitzvah for a father to assure the marriage his children (Kid. 29a ff; Ket. 52b; San. 93a). We will not consider the matter of choice of mate, which has been discussed at great length in the literature. Marriage, with the normal move from the original home, is considered a mitzvah (Kid. 29a), and the traditional literature insists that a father is obliged to guide the child toward independence. In our case, the mother is similarly duty bound to assure her son’s independence, or at least to take him as far as possible. He, in turn, must continue to support his mother emotionally and help her according to his ability. The mother’s fear of the child’s independence should not be a factor in any decision about this operation.
The third issue concerns the resources to be expended upon this individual.
The social agency obviously feels that the money spent in this fashion will enable him to be less of a public charge both now and later in life. Jewish tradition lauds expenditures for this purpose. When Maimonides listed degrees of charity, the highest prepared the individual to be independent (YadHil. Matnat Aniyim, 10.7 ff).
Some doubts have been
expressed whether the individual involved would actually be able to benefit from the operation and make the psychological adjustment to his new, improved status. That clearly is a matter of judgment which only a physician with considerable experience can decide. However, the surgeon should see himself primarily as the agent who sets the stage for possible future improvement. Unless this has been done, no improvement is possible. This willingness to take a chance and to risk failure is a basis of many aspects of life and religious life. For example, the entire notion of atonement connected with the yamim naraim and especially Yom Kippur, suggests that we ma be forgiven for past errors and begin anew; yet, there is no guarantee of such improvement. True repentance is sought, but the goal remains allusive (Yom. 86b; YadHil. Teshuvah 1.1 ff).
Tradition would have us note the problems
connected with this operation. However, if the surgeon feels that it will be successful, and beneficial to the patient then the risk should be taken.
February 1984
If needed, please consult Abbreviations used in CCAR Responsa.