“Accurate descriptions of sex chromosome differences are critical, the decisions potentially regrettable, and the long-term outcomes devastating if a termination is based on the misinformation,” that the patient later discovers to be misinformation for instance, “that any of these conditions is comparable to Down’s Syndrome” (Biesecker r 2001:2) Conversely, it is also important not to minimize the odds of a potentially fatal genetic condition like Tay Sachs disease.
Providers are obliged to obtain useful up-to-date information and to ensure parents have adequate opportunity to consider their decision with the help of an experienced healthcare provider, preferably in medical genetics, and if necessary, a counselor who is attuned to the cultural assumptions and needs of the couple’s population group, and religious beliefs. Certain populations might have a different view and understanding of the real difficulty of raising a child suffering from a heritable disorder, or even the concept of heritability of common disorders.
Attitudes toward abortion, desires for biological children, religious beliefs, attitudes toward disability and human variation, and social norms about prenatal testing outcomes are likely influences upon the couple’s decision, and all of these attitudes should be discussed in a culturally sensitive manner, as must practical issues such as money and social support. Thus, healthcare providers have an obligation to explore the meaning the information has for women and their partners to help decision-making within a culturally meaningful context and practical context.
Having access to knowledge or speaking with individuals from the couple’s population group, especially if different from the counselor’s own can be valuable, to gain a better understanding of the belief systems and support systems open to the couple in dealing with a child with serious medical complications or the aftermath of an abortion. Of course, not all women experience depression after abortion. However, “grief reactions that accompany therapeutic abortion for medical or genetic reasons are similar to grief reactions that accompany a spontaneous abortion” or miscarriages, regardless of when the therapeutic abortions are performed (Rosenfeld 1992:1). “The woman and her partner experience the same stages of grieving as families whose child died unexpectedly. The grieving process may be complicated by family and friends who may have been unaware of the pregnancy, who may be ambivalent or who may not recognize the grieving process” as legitimate, or simply because the couple lacks social support to articulate grief (Rosenfeld 1992:1). Understanding how grief, loss, and the unborn are viewed by the couple’s community and faith structure is part of the counseling and treatment — no grief is generic.
What may make the grieving process more difficult is that “traditional elements of grieving, such as funerals or memorial services, are seldom observed” after a medically necessary abortion in some cultures and “the parents may be uncertain about their ability to have healthy children,” or it may have been suggested that they do not, given their genetic history (Rosenfeld 1992: 1). “Strong beliefs regarding abortion may prevent medical professionals and friends from providing counseling and support, which may complicate the family’s grieving process,” as may a lack of access to counseling, and “the incidence of depression appears to be increasing in women and their spouses who choose abortion because of genetic or medical reasons” who do not have access to counseling (Rosenfeld 1992:1). Carrying the child to term is not necessarily the ‘answer’ however, but finding a release for the couple and creating resources where there may seem to be none may be a need that a health care provider may have to address, along with the post-surgical treatment following an abortion.
However imperfectly it is disseminated, via phone, or arranging for another appointment at a later date, follow-up counseling is just as essential as follow-up physical care. Many counselors believe “the couple should be advised not to have another child until the grieving process has been completed. Counseling should be directed at helping the couple overcome feelings of guilt, feelings of decreased self-worth and feelings of defectiveness. Referral to support groups may be helpful or the use of non-judgmental counseling and support structures that are accessible within the couple’s own community (Rosenfeld 1992:1). Providing advice about creating such groups within communities without access to the more extensive array of options in urban locations should be a long-term goal pursued by the health care community.
Earlier diagnosis of fetal anomalies, allowing a first-trimester the psychologic impact of abnormal genetic findings will hopefully make the process easier. But no matter how fast and far science progresses, a “competent and effective genetic counselor must recognize and deal with the psychological defense mechanisms which affected persons and parents of affected children use to cope with the strain of genetic disease in the family” (Murray 1976:12). Regardless of background, the grief processes of “denial, guilt, hostility, grief and mourning and the psychology of defectiveness are all potent emotional factors that must be dispelled or worked through before parents should make reproductive decisions. If the counseling experience is to be satisfactory, the counselor must help parents meet the immediate and long-term social needs of affected individuals in addition to their medical needs” (Murray 1976: 12).
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