American Journal of Medical Genetics 4:213-214 (1979)
Editorial Comment: Informing Parents In this issue of the Journal, Hiroshi Shioni and Jun-Ichi Kadowaki of Japan present data from their country on parental dissatisfaction with the way in which they learned or were informed about their child’s potential mental retardation. This is a most important issue, for in spite of the extraordinary improvement of our knowledge of many biological aspects of the Down syndrome, the psychological aspects of managing and counseling such families are frequently neglected or are applied inadequately or improperly. The paper by Shiono and Kadowaki supports the need for improvement in this area. Perhaps the most important insight provided by this study is that physicians are exposed to frustration and anger by parents as they learn about the diagnosis. These feelings are enhanced when the physicians are perceived as paternalistic, as when they delay the informing interview or prescribe institutionalization. The latter observation has been reported in the United States also [Kranim, 19631 . Shiono and Kadowaki advocate telling early - a position which we have also represented for some time [Antley and Hwang, 19771. In addition to “good timing,” parents may also need means for dismissing the information for a time. Money [ 19751 has recommended that this be done by giving the diagnosis on a probabilistic basis. Such a tack allows physicians to inform early and to justify diagnostic procedures on the infant, while giving the parents time to deal with the disappointing news. In studies dealing with parental perceptions it is important to view the responses not only literally but also from a psychological point of view. Thus, a complaint about insensitivity while informing parents about their child’s impending death may be literally true or it may reflect directing of parental anger at the physician. Similarly, the report by parents that they were told of the diagnosis in a way making it difficult or impossible to distinguish their child from normal may indicate camouflaging of the diagnosis by the physicians and/or parental difficulty in processing the diagnostic information. Such difficulties occur frequently during periods of high anxiety [Money, 19751 and require expert anxiety management by the counselor. Camouflaging reduces counselor effectiveness because it avoids the hard conflict inherent in conveying such a serious diagnosis. We view this as a particularly destructive act because it feeds denial and prevents parents from recognizing the problem fully and planning to act on it. Not raising their anxiety may leave the parents passive and powerless, with the result that when they finally learn the real prognosis they tend to discount the physicians’ credibility and to focus excessive anger on them. Shiono and Kadowaki advocate full disclosure of diagnosis and prognosis. This is needed to provide good management of the child with Down syndrome [Zackey, 19791. Timing of such disclosure is important. Under ideal circumstances the parents should be told in several sessions in which information is given with careful regard to their readiness
0148-7299/79/0403-0213$00.800 1979 Alan R. Liss, Inc.
214
Antley
and ability to hear. Because of initial shock and anxiety, parents may not retain information given in a single interview, and we strongly advocate providing written information, not only to help the parents but to document full disclosure. It was of interest to learn that in Japan parents sought abortion so frequently after having a child with the Down syndrome. In Indianapolis we have noted that after prenatal diagnosis of an affected fetus and termination of the pregnancy parents frequently seek sterilization. A nagging doubt in our mind is whether this represents inadequate counseling or true understanding of all options and a well-informed decision. The Japanese studies and ours suggest need for further counseling to be sure the counselees understand the availability of prenatal diagnosis before depriving themselves of the ability to have normal children by rushing to abortion blindly or to irreversible sterilization. Both decisions are as regrettable as disregard for recurrence risk information, for, in the Down syndrome, prenatal diagnosis offers many parents an acceptable, legal, and safe reproductive option.
Ray M. Antley
REFERENCES Antley RM, Hwang DS: The Down syndrome - Modern genetic counseling. Continuing Education 14:56, 1977. Kraninin E: Families of Mongoloid Children; Washington, DC; Children’s Bureau, U.S. Department of Health, Education and Welfare, 1963. Money J: Counseling in genetics and applied behavior genetics. In Schaie KW, Anderson VE, McLearn GE, Money J (eds): “Developmental Human Behavior Genetics.” Lexington, Massachusetts: Lexington Books, 1975, pp 151-170. Zackey JT: Amniocentesis and the duty t o inform. Trial 15:14, 1979.
Editorial Comment: Informing Parents In this issue of the Journal, Hiroshi Shioni and Jun-Ichi Kadowaki of Japan present data from their country on parental dissatisfaction with the way in which they learned or were informed about their child’s potential mental retardation. This is a most important issue, for in spite of the extraordinary improvement of our knowledge of many biological aspects of the Down syndrome, the psychological aspects of managing and counseling such families are frequently neglected or are applied inadequately or improperly. The paper by Shiono and Kadowaki supports the need for improvement in this area. Perhaps the most important insight provided by this study is that physicians are exposed to frustration and anger by parents as they learn about the diagnosis. These feelings are enhanced when the physicians are perceived as paternalistic, as when they delay the informing interview or prescribe institutionalization. The latter observation has been reported in the United States also [Kranim, 19631 . Shiono and Kadowaki advocate telling early - a position which we have also represented for some time [Antley and Hwang, 19771. In addition to “good timing,” parents may also need means for dismissing the information for a time. Money [ 19751 has recommended that this be done by giving the diagnosis on a probabilistic basis. Such a tack allows physicians to inform early and to justify diagnostic procedures on the infant, while giving the parents time to deal with the disappointing news. In studies dealing with parental perceptions it is important to view the responses not only literally but also from a psychological point of view. Thus, a complaint about insensitivity while informing parents about their child’s impending death may be literally true or it may reflect directing of parental anger at the physician. Similarly, the report by parents that they were told of the diagnosis in a way making it difficult or impossible to distinguish their child from normal may indicate camouflaging of the diagnosis by the physicians and/or parental difficulty in processing the diagnostic information. Such difficulties occur frequently during periods of high anxiety [Money, 19751 and require expert anxiety management by the counselor. Camouflaging reduces counselor effectiveness because it avoids the hard conflict inherent in conveying such a serious diagnosis. We view this as a particularly destructive act because it feeds denial and prevents parents from recognizing the problem fully and planning to act on it. Not raising their anxiety may leave the parents passive and powerless, with the result that when they finally learn the real prognosis they tend to discount the physicians’ credibility and to focus excessive anger on them. Shiono and Kadowaki advocate full disclosure of diagnosis and prognosis. This is needed to provide good management of the child with Down syndrome [Zackey, 19791. Timing of such disclosure is important. Under ideal circumstances the parents should be told in several sessions in which information is given with careful regard to their readiness
0148-7299/79/0403-0213$00.800 1979 Alan R. Liss, Inc.
214
Antley
and ability to hear. Because of initial shock and anxiety, parents may not retain information given in a single interview, and we strongly advocate providing written information, not only to help the parents but to document full disclosure. It was of interest to learn that in Japan parents sought abortion so frequently after having a child with the Down syndrome. In Indianapolis we have noted that after prenatal diagnosis of an affected fetus and termination of the pregnancy parents frequently seek sterilization. A nagging doubt in our mind is whether this represents inadequate counseling or true understanding of all options and a well-informed decision. The Japanese studies and ours suggest need for further counseling to be sure the counselees understand the availability of prenatal diagnosis before depriving themselves of the ability to have normal children by rushing to abortion blindly or to irreversible sterilization. Both decisions are as regrettable as disregard for recurrence risk information, for, in the Down syndrome, prenatal diagnosis offers many parents an acceptable, legal, and safe reproductive option.
Ray M. Antley
REFERENCES Antley RM, Hwang DS: The Down syndrome - Modern genetic counseling. Continuing Education 14:56, 1977. Kraninin E: Families of Mongoloid Children; Washington, DC; Children’s Bureau, U.S. Department of Health, Education and Welfare, 1963. Money J: Counseling in genetics and applied behavior genetics. In Schaie KW, Anderson VE, McLearn GE, Money J (eds): “Developmental Human Behavior Genetics.” Lexington, Massachusetts: Lexington Books, 1975, pp 151-170. Zackey JT: Amniocentesis and the duty t o inform. Trial 15:14, 1979.
