177too heavily on information provision at the expense of considering the couple’s
psychosocial circumstances. As she reflects, “It is not always (ever?) enough to
just give people genetic information. It is so very important to consider the con-
text in which patients receive the information” (p. 233). As you become more
comfortable and gain experience, you will be better able to discern what is most
relevant for each patient.- Be selective about the information you provide in a follow-up letter or medical
record. If you write patient letters, keep them relatively short and uncomplicated.
Roggenbuck et al. ( 2015 ) found that “a short letter [about 1.5-2 pages in length]
highlighting the basic facts related to the genetic condition may be more useful
to parents of diverse educational backgrounds and may support a positive emo-
tional adaptation at the time of a new diagnosis” (p. 645). The shorter letters
contained less technical jargon and simpler sentences. As medicine moves toward
electronic medical records, be aware that some written information (e.g., clinic
notes) can/will be accessed by patients. - Be strategic about deciding whether to give patients information they don’t want.
As discussed earlier in this chapter, some information is critical and must be
shared with a patient. There are situations, however, where it may be appropriate
to consider patient preferences. Researchers have found that a major ethical and
professional challenge is deciding whether or not to withhold information when
patients don’t want to hear it (Abad-Perotín et al. 2012 ; Alliman et al. 2009 ;
Bower et al. 2002 ; Gschmeidler and Flatscher-Thoeni 2013 ; McCarthy Veach
et al. 2001 ). For instance, some patients may resent being given a detailed
description of abortion when they have explicitly stated abortion is not an option
for them. We suggest you acknowledge a patient’s feelings about an option such
as abortion and then adjust the amount of information you provide. For example,
“I understand that you consider abortion to be an unacceptable option. I respect
your feelings about that. I just wanted to make sure you are aware that it’s an
option. Let’s talk about the options that will work for you.” - Regulate the rate at which you provide information. Refrain from lengthy state-
ments, especially when they contain threatening information. For example, say-
ing the following, “Your results are back and you do have the BRCA gene, but
there are a lot of things you can do to protect your health; you can have regular
mammograms, consider having prophylactic surgery, and continue to maintain a
good diet and exercise plan,” does not allow the patient room to process the test
result emotionally and cognitively. You need to give the patient time and space to
“catch up.” Proceed slowly so your patients can let the information sink in and
experience some of their initial feelings and thoughts before moving to the next
step. - Check patient comprehension. Periodically assess your patient’s understanding
of the information. For example, you might ask “What’s your understanding of
what we’ve just discussed?”
7.1 Communicating Information