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- Convey understanding and acceptance of your patients no matter what deci-
sion they make. Patients tend to approach genetic counseling decisions the way
they typically have approached big decisions in their past. So, it may be useful
to ask your patients to briefly describe their typical decision-making style
(e.g., “Think about an important decision you made in the past. How did you
go about making the decision?” or “How does the way you’re going about
making this decision compare with the way you’ve made other big decisions in
your life?”). - If patients are going about making a decision in an atypical way (e.g., rational
deciders who suddenly become very dependent and want you to tell them what
to do), this can be evidence that they feel overwhelmed or that some important
factor is in the way and needs to be discussed. Consider pointing out this discrep-
ancy and talking about how they are feeling. - Reassure patients that they do not have to make a final decision on the spot. Even
in prenatal counseling, where there may be a greater time pressure, usually a
patient or couple can go home and sleep on it. When feasible, offer patients the
option to take time to make decisions and encourage them to make one decision
at a time (Underhill and Crotser 2014 ). - Keep in mind that you have not failed as a genetic counselor if your patient
doesn’t make a decision. Remember, not deciding is a decision. It’s a decision
not to decide. This strategy allows time and/or a change in circumstances that
may help them choose an option or eliminate certain options (e.g., putting off a
decision regarding presymptomatic testing means the patient may develop
symptoms of a late-onset disorder; similarly, deferring a decision to have carrier
testing prior to conception to allow for consideration of PGD may lead to a situ-
ation where the patient has an unplanned pregnancy and no longer has this
option). It is important that you point out these consequences to indecisive
patients. - Explore with patients their reasons for making the decision. “Questions of a
reflective nature are crucial so as to ensure that the clients have gone through
an informed process of reaching a decision—the counselor thus focuses on the
process of the decision-making rather than the decision reached (Shiloh
1996)” (cited in Sarangi et al. 2004, p. 138). For example, “What will choos-
ing this option mean for you?”; “What do you see as the pros? The cons?”;
“Sometimes patients choose this option because it will... Is it possible this is
part of what’s motivating you to make this choice?” Encourage patients to be
honest about their motivation and to consider whether this is the motivation
they wish to have driving their decision (e.g., a patient who is rushing into a
decision before all the pertinent information is available because she dislikes
how anxious she feels). - Gently “question or challenge clients’ views that [may be] poorly reasoned,
misguided, or perhaps ethically questionable” (White 1997, p. 305). For
instance, a patient says, “I’m not going to share this information with my sister
because we don’t get along.” You may be able to engage a patient in a discussion
7 Providing Information and Facilitating Patient Decision-Making