Matchmaking scheme solves Tay-Sachs problem.
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As patients near the end of life, their spiritual and religious concerns may be awakened or intensified. Many physicians, however, feel unskilled and uncomfortable discussing these concerns. This article suggests how physicians might respond when patients or families raise such concerns. First, some patients may explicitly base decisions about life-sustaining interventions on their spiritual or religious beliefs. Physicians need to explore those beliefs to help patients think through their preferences regarding specific interventions. Second, other patients may not bring up spiritual or religious concerns but are troubled by them. Physicians should identify such concerns and listen to them empathetically, without trying to alleviate the patient's spiritual suffering or offering premature reassurance. Third, some patients or families may have religious reasons for insisting on life-sustaining interventions that physicians advise against. The physician should listen and try to understand the patient's viewpoint. Listening respectfully does not require the physician to agree with the patient or misrepresent his or her own views. Patients and families who feel that the physician understands them and cares about them may be more willing to consider the physician's views on prognosis and treatment. By responding to patients' spiritual and religious concerns and needs, physicians may help them find comfort and closure near the end of life.
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A screening program for the detection of Tay-Sachs disease (TSD) carriers in the ultra Orthodox community of Ashkenazi Jews has operated in Israel since 1986. The purpose of this program is the prevention of marriages of 2 heterozygotes. The screened individuals are mostly couples in the engagement process or students in religious high schools. Two mandatory requirements guide this program. First, anonymity of the tested individuals who are identified only by code numbers; second completion of the test results of couples in the engagement process within a few days. The screening program is performed by the determination of hexosaminidase A (Hex A) activity in serum which is repeated in serum and leukocyte extracts in couples where both partners were found in the heterozygote range in the initial tests. The minimal carrier frequency was estimated to be 1:26 or higher, which is higher then in the general Jewish Ashkenazi population. This higher carrier frequency apparently stems from the fact that most members of this community originate from central Europe where the TSD carrier frequency was previously reported to be the highest in the Ashkenazi population. Since the beginning of the screening program no TSD child has been born to newlywed couples of this community in Israel.
Medical researchers must continue to develop and test non-blood oxygen-transport products. Resources provided by the Jehovah's Witness Hospital Assistance Line must be consulted. Sickle cell researchers must continue to test non-blood treatment. Information about non-blood treatments must be disbursed. Ways to enhance parental comfort as the laws further and further support children's best interest must be provided. Information regarding cultural diversity must be disseminated. Hospitals and healthcare agencies that have not done so must institute the use of ethics consulting or ethics committees. Nurse ethicists must continue development of the role of educating staff; mediation, arbitration and negotiation; problem solving; obtaining legal opinion; providing patient, family, or staff advocacy; and helping to reduce suffering on the part of the providers. Difficult ethical decisions should continue to be debated. Were the staff X Med Center correct in overriding parental wishes and breaking tenets of their faith? In the doctor's, nurse's, lawyer's, and judge's view they were. The child, now eight years old, is alive and well. The stroke resolved, and imminent death averted. The parents' and child's views are not presently available. Whether the family is suffering from the child's loss of his relationship with God, or are secretly relieved in their hearts that they are not, like Rita Swan, mourning their dead son, is unknown. What is known, is that this was a difficult case for all involved, and that such cases will continue to present themselves in the future.
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A recommendation for pastoral care representation on hospital ethics committees (HEC) is commonplace in the literature, but the rationale for this recommendation (and the actual practice) often is assumed or unarticulated. The authors propose a holistic anthropology which acknowledges the bodily, psychological, and spiritual aspects of all persons as a starting point for discussing the reasons for pastoral care representation. The spiritual aspect of the human person is described together with the role of the clinical chaplain on the HEC. The qualifications, skills, and training required for the HEC representative are also provided.
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