Testing Options

Case Study

Amanda recently began working as the only genetic counselor in a high risk prenatal care center. Today, Amanda is meeting with Ori and her husband Tal, who were referred for ultrasound findings of cleft lip, congenital brain malformation (no cerebellum), heart anomalies, and intrauterine growth retardation in the fetus (26 weeks gestation). Before the session, Amanda is told by the geneticist and cardiologist that the fetus probably has Trisomy 13 and is not expected to survive until birth. Amanda’s role is to share this information with the couple, assess whether they would like to proceed with any testing, and develop a plan for next steps. Amanda plans to provide psychosocial support and to discuss amniocentesis with the couple.

When Amanda walks into the room to greet Ori and Tal, she finds the couple with their heads bowed down. After a minute of silence, Ori and Tal look up and explain to Amanda that they felt a prayer was needed before the genetic counseling session. Amanda feels nervous, but smiles warmly. Then, she launches into breaking the bad news. When the couple hears that the baby is likely to have a chromosomal condition, Ori shakes her head and cries out, “That it is not possible!” Ori tells the genetic counselor that the baby is the reincarnation of her father who passed away only 5 months ago. At the end of his life, Ori’s father had severe heart problems and Alzheimer’s disease. Although she would not dare say this to anyone, Ori had feared that her baby would have the same problems as her father.

Amanda is not sure what to think, believe, or respond to this unexpected explanation. She debates in her head whether she should discuss amniocentesis with the couple. Amanda rationalizes that if she dwells on discussing testing options, she would not be respecting Ori and Tal’s beliefs. She asks the couple if they would like to speak to the geneticist. Tal, who has been quiet, says that he and his wife don’t want any testing and they don’t want to see any more specialists. “We must not disturb the baby’s spirit.” Ori and Tal rise to leave. Amanda is speechless.

Personal Reflections

  • What are your first reactions to this case?

  • Have you ever experienced a situation like this? What were the similarities to this session? What were the differences?

  • What are the potential personal and/or religious reasons for Amanda’s feelings of uncertainty?

  • Did this situation cause you to question your knowledge, skills, ability and/or willingness to effectively serve all patients?

  • What assumptions have you made about Ori and Tal?

  • What thoughts do you have about further exploring the context of this couple’s religious and spiritual beliefs and practices?

  • What are your personal views toward religion and spirituality?

  • Write down any questions you typically ask about clients’ religion and/or spirituality. Why do you ask these specific questions?

  • What are your thoughts about the role of prayer in health care settings in general, and specifically in the genetic counseling setting?

  • How did you feel when Ori said the baby was a reincarnation of her father? Why do you think you felt that way?

  • Do you consider yourself to be religious or spiritual? If so, consider whether your religiosity/spirituality has changed over time and in specific situations.

  • What is your personal experience with receiving “life-changing” news? What was the role of your own religious or spiritual views in receiving and coping with the news, and dealing with any associated decisions and consequences?

 

 

 

 

 

 

 

 

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