189- Understand that how you provide risk information has a significant impact on
patient interpretations of its meaning. “Informing an individual that he or she has a
chance of a particular occurrence of 1.3 in 10,000 compared to the general popula-
tion’s chance of 1 in 10,000 is not particularly impressive to most people. However,
if the format was such that the individual was informed that his or her risk is 30%
greater than that of the average individual, the situation is likely to be seen as
‘riskier,’ although the two situations are equivalent” (Bottorff et al. 1998 , p. 70).
Point out that while population frequencies contribute to estimating their personal
risk, they are not the “whole story” for the patient (O’Doherty and Suthers 2007 ). - Emphasize that risks are probabilities, not guarantees (O’Doherty and Suthers
2007 ). Try to help patients understand the uncertainties involved. - Be aware, as we’ve stressed in this chapter, that it is very difficult to communi-
cate objective risk to patients (Sivell et al. 2008 ). Bottorff et al. ( 1998 ) offer an
illuminating example: “Providing risk information about cancer to individuals
who may perceive themselves to be healthy, and who may or may not have
directly observed a close relative with the disease, requires these individuals to
engage in sophisticated abstract thinking. This issue becomes more pronounced
in situations where there is not effective therapy available or the information is
only relevant in considerations of possible future outcomes” (p. 69). - Assess patient reaction to risk information. Austin ( 2010 ) and Sagi et al. ( 1998 )
point out that risk perception is not equivalent to probability. As mentioned ear-
lier, risk perception actually involves both probability and adversity (or burden
of an outcome). So, one of your challenges is to assess how adverse a particular
outcome would be for your patient and to associate that adversity with the prob-
ability of the outcome occurring. Try working with your patient to identify all
short-term and long-range consequences of a particular outcome (medical, psy-
chosocial, financial, lifestyle, etc.) and its relative importance or likely impact
(O’Doherty and Suthers 2007 ). - Ask patients to summarize their understanding of their risk after you have given
them the information (e.g., “What is your understanding of the risk we’ve just
discussed?”). This will allow you to correct any inaccuracies and will provide
insight into their subjective perceptions of risk. - Explore patient feelings about their personal risk. Emotions may include fear,
anger, guilt, grief, shame, embarrassment, and lowered self-esteem (Bottorff
et al. 1998 ) and may include “difficulties confronting perceived lack of control
and seemingly irrevocable fate, desires to frame genetic information positively in
order to avoid despair and helplessness and seek hope, and efforts to reduce anxi-
ety by finding order in the face of fate and seeming randomness” (Klitzman
2010 , p. 445). Try an empathy response in which you reflect your patient’s feel-
ings. For example, “You’ve gotten very quiet since I gave you the information
about your risk. Are you feeling scared right now?” Be tentative with your empa-
thy as Klitzman ( 2010 ) noted, “Given that emotional conflicts may not be fully
conscious, providers should proceed very carefully in addressing them” (p. 445).
7.1 Communicating Information