Journal of Genetic Counseling~ VoL 3, No. 4, 1994
Letters to the Editor
Niflings are Nephews and Nieces To the Editor:.
A composite word to describe both aunts and uncles already exists. Try introducing "avuncular" to your family and see how it flies. Those who tackle crossword puzzles on a regular basis are probably already familiar with it. I looked it up in several dictionaries and saw a variety of definitions, some dealing only with uncles and some with both uncles and aunts. It is usually listed as an adjective, although I have heard it used as a noun in several presentations at ASHG meetings.
Vickie L. Venne, M.S. Myriad Diagnostic Services, Inc. 390 Wakara Way Salt Lake City, Utah 84108
Living with Patients' Decisions To the Editor:
In a recent article, Begleiter and Rogers (1994) report on the dilemmas faced in counseling a couple who, when faced with increasingly abnormal findings on serial ultrasound, elected not to pursue amniocentesis. The authors contend that this couple was unable to make the appropriate decision regarding the amniocentesis because of their grieving reaction over the ultrasound findings. They question whether a more directive approach should have been used to "guide the family toward options that would provide them with the greatest benefit." In reviewing this case, consideration must be given to the concepts of benefit, the appropriateness of the couple's decision, how denial influences decisions, and appropriate counselor interventions. 341 1059-7700/94/1200-0341507.00/1 © 1994 National Society of Genetic Counselors, Inc.
342
Letters to the Editor
It is important to recognize that benefits are subjective. F r o m the perspective of a medical professional, possible "benefits" to the family of the knowledge include having time to prepare, being able to make appropriate decisions should an obstetric emergency arise, and having another opportunity to make decisions regarding continuation of the pregnancy. However, we must recognize that the family may have a different value system, and may not wish to know the full information at that time. The medical profession recognizes that some information is of such consequence that patients must be counseled before they are allowed to receive it. This is true of protocols for testing for Huntington disease and HIV. Just as we would not presume that a patient with clear thinking would always want the results of these tests, we must afford our prenatal patients the same respect. Regarding decision-making, the authors express concern over the situation in which the "family is unable to make decisions consistent with their life style, values, and cultural ideology." They consider the mother's statement that she was too overwhelmed and confused at the time of the diagnosis to c o m p r e h e n d the implications as a reason for the counselor to guide the family toward more testing. This family clearly stated at the outset that they had strong religious beliefs. The decisions that they made were consistent with these beliefs. In this case, pursuing the amniocentesis or terminating the pregnancy may have been less consistent with the couple's values. H a d this same couple chosen one of the latter options, would the same concern over their decision-making ability have been raised? Certainly, the existence of denial in a prenatal diagnosis setting is an important issue. Denial is a normal part of the grieving process. Although this defense mechanism may prevent a couple from realizing the full implications before making a decision, an attempt on the part of the counselor to interfere with a normal process may have an even worse effect. This may be especially true in the case of a couple who is continuing a pregnancy, since they must cope with the diagnosis without knowing the baby. The authors consider this case to involve an ethical conflict between autonomy and beneficence. The facts presented in this case do not demonstrate this conflict. This case does, however, illustrate the frustrations of counselors who have an intellectual appreciation of the implications of the situation. They must then care for a couple who is denying the information or, in another manifestation of the grieving process, is expressing anger. As the authors recommend, it behooves us to learn all that we can about the decision-making process that clients undergo and about the most appropriate counselor interventions. In a recent article, Lubinsky (1994)
Letters to the Editor
343
presented some strategies that counselors may find helpful when faced with this situation in the future. In this way, both client and counselor will be more comfortable with the ultimate decisions and outcomes. Sharon Sunta~ M.S. Boonton, N e w Jersey 07005
REFERENCES Begleiter ML, Rogers JC (1994) Genetic counseling for a family with two distinct anomalies: A case report of a neural tube defect and 5p-syndrome in a fetus. J Genet Counsel 3(2):87-93. Lubinsky MS (1994) Bearing bad news: Dealing with the mimics of denial. J Genet Counsel 3(1):5-12.
Letters to the Editor
Niflings are Nephews and Nieces To the Editor:.
A composite word to describe both aunts and uncles already exists. Try introducing "avuncular" to your family and see how it flies. Those who tackle crossword puzzles on a regular basis are probably already familiar with it. I looked it up in several dictionaries and saw a variety of definitions, some dealing only with uncles and some with both uncles and aunts. It is usually listed as an adjective, although I have heard it used as a noun in several presentations at ASHG meetings.
Vickie L. Venne, M.S. Myriad Diagnostic Services, Inc. 390 Wakara Way Salt Lake City, Utah 84108
Living with Patients' Decisions To the Editor:
In a recent article, Begleiter and Rogers (1994) report on the dilemmas faced in counseling a couple who, when faced with increasingly abnormal findings on serial ultrasound, elected not to pursue amniocentesis. The authors contend that this couple was unable to make the appropriate decision regarding the amniocentesis because of their grieving reaction over the ultrasound findings. They question whether a more directive approach should have been used to "guide the family toward options that would provide them with the greatest benefit." In reviewing this case, consideration must be given to the concepts of benefit, the appropriateness of the couple's decision, how denial influences decisions, and appropriate counselor interventions. 341 1059-7700/94/1200-0341507.00/1 © 1994 National Society of Genetic Counselors, Inc.
342
Letters to the Editor
It is important to recognize that benefits are subjective. F r o m the perspective of a medical professional, possible "benefits" to the family of the knowledge include having time to prepare, being able to make appropriate decisions should an obstetric emergency arise, and having another opportunity to make decisions regarding continuation of the pregnancy. However, we must recognize that the family may have a different value system, and may not wish to know the full information at that time. The medical profession recognizes that some information is of such consequence that patients must be counseled before they are allowed to receive it. This is true of protocols for testing for Huntington disease and HIV. Just as we would not presume that a patient with clear thinking would always want the results of these tests, we must afford our prenatal patients the same respect. Regarding decision-making, the authors express concern over the situation in which the "family is unable to make decisions consistent with their life style, values, and cultural ideology." They consider the mother's statement that she was too overwhelmed and confused at the time of the diagnosis to c o m p r e h e n d the implications as a reason for the counselor to guide the family toward more testing. This family clearly stated at the outset that they had strong religious beliefs. The decisions that they made were consistent with these beliefs. In this case, pursuing the amniocentesis or terminating the pregnancy may have been less consistent with the couple's values. H a d this same couple chosen one of the latter options, would the same concern over their decision-making ability have been raised? Certainly, the existence of denial in a prenatal diagnosis setting is an important issue. Denial is a normal part of the grieving process. Although this defense mechanism may prevent a couple from realizing the full implications before making a decision, an attempt on the part of the counselor to interfere with a normal process may have an even worse effect. This may be especially true in the case of a couple who is continuing a pregnancy, since they must cope with the diagnosis without knowing the baby. The authors consider this case to involve an ethical conflict between autonomy and beneficence. The facts presented in this case do not demonstrate this conflict. This case does, however, illustrate the frustrations of counselors who have an intellectual appreciation of the implications of the situation. They must then care for a couple who is denying the information or, in another manifestation of the grieving process, is expressing anger. As the authors recommend, it behooves us to learn all that we can about the decision-making process that clients undergo and about the most appropriate counselor interventions. In a recent article, Lubinsky (1994)
Letters to the Editor
343
presented some strategies that counselors may find helpful when faced with this situation in the future. In this way, both client and counselor will be more comfortable with the ultimate decisions and outcomes. Sharon Sunta~ M.S. Boonton, N e w Jersey 07005
REFERENCES Begleiter ML, Rogers JC (1994) Genetic counseling for a family with two distinct anomalies: A case report of a neural tube defect and 5p-syndrome in a fetus. J Genet Counsel 3(2):87-93. Lubinsky MS (1994) Bearing bad news: Dealing with the mimics of denial. J Genet Counsel 3(1):5-12.
