Testing Options

Summary: Genetic Testing and Religion/Spirituality

In this case, Amanda was quiet when she walked into the room, allowing Ori and Tal private time. However, Amanda then focused on her personal agenda of communicating the diagnostic information to the couple as soon as possible. Indeed, Amanda did not seem to know how to respond to the couple when they shared that they had been praying. Similar to health care providers who shy away from inquiries that they fear may take them to “the brink of turbulent and unfamiliar waters” (Cohen et al., 2000), Amanda provides inadequate care. Given the serious information Amanda needs to communicate, perhaps she could have spent more time listening to and developing trust with the couple. Time may seem short, but “few pregnancy-related procedures are so urgent that time cannot be made for consideration of the faith implications of therapeutic options” (Anderson, 2002).

Perhaps Amanda could have explored the couple’s perspectives on prayer before launching into the diagnostic information. We do not know about Amanda’s personal viewpoints on religion/spirituality, or whether she has had previous experiences with prayer in the genetic counseling setting. One might argue, however, that Amanda has a moral obligation to attend to the couple’s spiritual needs within the framework of providing client-centered, respectful, and supportive genetic counseling. Sulmasy (2009) asserts that “when the patient is religious and the health care professional is not, the physician should take the initiative to make inquiries about the patient’s religious beliefs and be supportive and perhaps even to be encouraging of that patient’s beliefs. When the health care professional is religious and the patient is also religious, then both should be able to talk about religion in relationship to healing.”

Fowler (1981) suggests a question that may be helpful to engage clients on the topic of prayer: “When you pray, what do you feel is going on when you pray?” This question and the subsequent discussion might have helped Amanda better understand the Ori and Tal’s perspectives, fears, beliefs, and coping mechanisms. If she had known that the news of the baby’s abnormalities is what they fear most, she could have used additional counseling interventions to help them prepare to receive the unwanted news. Perhaps Amanda could have asked, “Could you share how prayer brings you comfort in difficult times?” or “In the past, how has your religion helped you through tough times?”

After that, what should Amanda do?

Sulmasy (2009) offers advice for physicians who uncover profound spiritual concerns and are uncertain about what to do next. Sulmasy suggests “the clinician can simply say, “It seems that these matters are serious and important. I’m very glad that I asked. Now we need to figure out how best to help you. I think it would be beneficial if a member of our pastoral care staff, Reverend Jones, were to come to see you. If it is OK with you I will let her know that we’ve had this conversation…” Rather than abandoning the couple, Amanda could have made this suggestion and welcome the expertise of a member of the clergy or a pastoral counselor. Ideally, the genetic and the pastoral counseling professionals will continue to work together with Ori and Tal to explore the couple’s thoughts about the pregnancy, next steps, and their future. “Families who are hesitant about their choices may find their paths made clear while reviewing their denomination’s doctrines with a spiritual leader” (Anderson, 2002). The genetic counselor should offer information and support, including grief, loss, and fetal hospice resources as appropriate.

Extended explicit discussions on religion and spirituality will generally not fall into the realm of the genetic counseling provider-client relationship. In depth elicitation of the client’s ‘spiritual story’ is best left to the pastoral counselor on the team. The Regent University Hope Research Project conducted by Davis et al. (n.d.) suggests four situations in which an in-depth, follow-up assessment of an individual’s religious and spiritual system is always warranted:

1) When religion and/or spirituality seems clinically relevant to the client/couple’s presenting problems and treatment goals;

2) When religion and/or spirituality is one of the primary informants of the client/couple’s worldviews;

3) When religion and/or spirituality appears likely to either facilitate or hinder therapeutic progress; and

4) When religion and/or spirituality is significantly impaired by the client/couple’s presenting problems.

When further religious and spiritual assessment is warranted or implied, topics to evaluate include, but are not limited to: metaphysical worldview, history, affiliation (past and current), experiences (past and current), values, meaning, beliefs, preferences, orthodoxy, deity/supreme being image(s), practices, value-lifestyle congruence, concerns, needs, struggles, coping style, prayer style, orientation (intrinsic/extrinsic), health, well-being, identity, maturity, and support system (Davis et al., n.d.).

Cohen et al. (2000) point out that due to disparities of power that operate in health care settings, it is important for providers to set ethical boundaries on their inquiries into patients’ religious concerns. Providers should not give patients the impression that the availability and quality of their treatment depends on whether they embrace certain religious commitments. Involving pastoral counseling as part of the care team allows patients to discuss their fundamental convictions freely. In some centers, pastoral counselors with expertise in genetic conditions, or genetics professionals with pastoral counseling training will be available. As the need for genetic services increases, there will be a commensurate need for more practitioners who are able to provide “pastoral genetic counseling” (Abdella, 2000). Inadequate numbers of pastoral counselors with sufficient education in clinical genetics currently exist (Boyle, 2004). Genetic counselors will likely need to reach out and create shared learning opportunities with local pastoral counseling departments and training programs. There are many potential topics suitable for case conferences, seminars, and invited lecture series to advance learning and skills development for practicing clinicians and trainees from both disciplines.

Amanda’s reasons for not exploring spirituality and religion with Ori and Tal are unknown to us. She may have felt uncomfortable approaching the subject. She may have been uncertain that she was the best person to speak with Ori and Tal about religion and spirituality. Or, she may have felt that discussion of religion/spirituality would not affect the outcome of her session. Regardless of the reason(s) why Amanda did not discuss religion and/or spirituality, the lack of conversation about religion and/or spirituality was detrimental. Perhaps Amanda could have encouraged this couple to tell her more about their baby’s spirit, Ori’s father, and their hopes and wishes for this baby. This approach could help Amanda build trust to facilitate an open discussion of the couple’s thoughts about Trisomy 13.

While religion and spirituality may be a challenging topic to explore, this case demonstrates that not exploring the topic makes the session even more difficult. Ideally, the genetic counselor will use one or more examples from this case to help facilitate discussion and exploration of religious and spiritual issues in genetic counseling sessions. When the client places strong emphasis on religion and/or spirituality and the genetic counselor is uncertain how to best incorporate them into the session, a referral to a hospital chaplain or a trusted member of the clergy in the community will always be appropriate.

Religion, spirituality, and genetic counseling are ideal topics for peer supervision sessions. It may be difficult to process the events of specific sessions due to blind spots caused by countertransference. The following are potential topics for discussion in a peer supervision setting. The questions should be considered privately by each participant before the group discussion.

  1. Have you ever discussed religion/spirituality with your genetic counseling colleagues? If so, what was the context for this discussion? If not, would this discussion be of interest? Why or why not?

  2. How often are you involved in genetic counseling sessions where the name of a divine being is implicated as a cause or a punishment for a genetic condition or a situation? Are there specific situations in your practice that tend to lead to discussions of a divine being? Would you like to see these topics arise in clinic more, or less, frequently? Why?

  3. How does gaining a deeper understanding of patients’ cultural and religious background enable genetic counselors to deliver more effective health care? Can you share any case examples?

 

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