195genetic counseling (pp. 228–232), and we encourage you to review these models for
use in facilitating patient decision-making.
Danish and D’Augelli (1983) created a rational decision-making model based
on three major assumptions: (1) it is useful to break decisions down into relevant
factors and to weigh each factor according to each alternative (option); (2) a sys-
tematic model helps to decrease anxiety about a decision and helps to put the fac-
tors involved in a decision into greater perspective; and (3) a rational model
includes emotions as a relevant factor, which helps patients deal with the vague-
ness that feelings often bring to decision-making situations. Their model includes
the following steps (which can be written down as they are discussed with a
patient):
- Patient briefly describes her or his situation and decision(s) to be made.
- Patient and counselor brainstorm or consider all possible alternatives
(options). - Brainstorm all possible relevant factors (e.g., medical, familial, cultural, psycho-
social, financial, ethical, values, etc.). Try to be as comprehensive as possible,
including short- and long-term factors, and break global factors into specific
ones (e.g., feelings could be broken down into relief, guilt, anger, depression,
etc.). Try to bring to the surface irrational factors that patients may be reluctant
to acknowledge (e.g., “Having an affected child might mean that I’m a failure as
a parent”). - Evaluate each alternative. Does it either satisfy or prevent each factor?
- Patient indicates the most important of the identified factors.
- Patient determines the most desirable and best alternatives. The desirable alter-
native is the one that attracts the patient the most; the best alternative is the one
that is in the patient’s best interest in the long run, although it may not be desir-
able at first glance. - Clarify and review the decision and revise it as new factors arise.
The following example illustrates the Danish and D’Augelli decision-making
model.
Patient Situation
Your patient is a 31-year-old woman whose mother and maternal grandfather were
affected with early-onset familial Alzheimer disease (EOFAD). The patient’s mother
developed symptoms in her late 50s and recently died at age 62. Prior to her death,
genetic testing confirmed a mutation in the PSEN1 gene. Your patient is married and
has one child, age 2. She and her husband would like to plan additional pregnancies.
The patient’s primary care physician suggested she seek genetic counseling and
testing prior to becoming pregnant. You have explained the autosomal dominant
inheritance of the EOFAD in the patient’s family and discussed options for predic-
tive testing. The testing would be straightforward as the disease-causing mutation in
this family is known. Together you identify the alternatives (her options) and the
relevant factors that might be influential in her testing decision, as shown in
Table 7.1.
7.3 A Rational Decision-Making Model for Genetic Counseling Patients