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Andersons pediatric cardiology 273

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with the physician's repeated mention of termination after parents stated they declined to terminate.25 This study also found that parents sought second opinions if they viewed the physician as not being knowledgeable on the diagnosis, or not compassionate In one study based in the United States, the majority of those who sought second opinions continued care with the second cardiologist.26 It is important to be aware of these issues and to clarify the parents’ comprehension regularly during a counseling session in order to avoid misunderstandings Couples should be given nondirective counseling in order to make the best decision for their unique social, cultural, and religious situations Counselor Self-Awareness Is Required to Limit Bias Evidence suggests that counselors do not provide unbiased information—Kon et al found that physician recommendations for hypoplastic left heart syndrome (HLHS) management were based on what the physicians’ affiliated hospital provided, even if they believed that higher survival rates would be achieved with a different procedure.39 Physicians must also be aware of the surgical/interventional outcomes in their own center and results and alternative treatment strategies available in other centers accessible to the patient and openly provide this information to parents The experience of the counselor may bias how information is presented Kon et al found that surgeons, intensivists, and cardiologists are more likely to recommend surgical options over comfort care compared with neonatologists at the same facility.39 The team approach to counseling may be more balanced than counseling by a single individual It is important that the counselor is aware that the parent may have very different views to him/her, including religion, background, education, and family circumstances, among other factors that will influence decision making Arya et al found that 54% of parents opposed termination for religious or moral reasons, while only 2% of physicians opposed termination for the same reasons.19 Almost half of physicians and nurses surveyed stated they would terminate the pregnancy if their child was prenatally diagnosed with HLHS.40,41 These predictions of termination by medical personnel are higher than the published termination rates for HLHS.42,43 The physician's personal opinion of pregnancy termination and whether they think they would choose termination of pregnancy if in a similar situation are hypothetical, related to their personal circumstances, and cannot be extrapolated to or be allowed to influence the couple being counseled Conversely, if a physician is not comfortable with counseling regarding termination for major CHD, he/she might arrange for such counseling by another Acknowledging parents’ autonomy can make couples feel that their opinions and decisions are being respected and allow for true informed consent Physicians must also be aware of their own views regarding neurodevelopmental delay (NDD) for patients with CHD In an international study of physicians, Paladini et al found that approximately half of physicians discussed the association of NDD and CHD with parents regardless of the type of CHD, while 32% discussed this association in selected cases.44 The majority of respondents were aware of the association between NDD and CHD; however, there was a large geographic difference in physicians’ prenatal counseling In North America, 92% of physicians reported discussing the risk of NDD regardless of the type of CHD, while 42% of physicians in Europe, and 22% in Asia did the same The authors note that it is of interest that despite the North American physicians reporting discussing NDD much more frequently, the termination of pregnancy rates in that geographic region are significantly lower than in Europe and Asia

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