265family through the adjustment to a diagnosis or who guides the mourning of a family
member. We assist families who are robbed of future events, memories, or envisioned
life experiences. By providing anticipatory guidance as to how the process of grief
works, we help individuals and families adjust to the circumstances of their lives that
genetics has altered” (p. 96).
Douglas ( 2014 ) similarly states that, “Genetic counselors frequently meet with
patients who are bereaved. Being diagnosed with cancer, having a relative or child
die of a genetic condition, giving birth to a child with a disability, and experiencing
infertility, a miscarriage or a stillbirth are all examples of common genetic counsel-
ing contexts in which our patients are experiencing grief” (p. 695).
Grief occurs when individuals lose something important to them (e.g., the per-
fect baby, the loss of one’s health) (Djurdjinovic 2009 ; Gettig 2010 ). Grief is uni-
versal because we all experience losses in our lives, and we all go through a recovery
process (Gettig 2010 ). The grieving process, however, may take several years
(Gettig 2010 , p. 96) and, in some ways, may never be finished: “Years after the
onset of the disability, mothers describe feeling sad and wanting to take away the
disability from their children, while at the same time feeling content and happy and
loving their child just the way they are. These sorts of findings show us that the
traditional idea of ‘acceptance’ does not apply to parents of children with a
disability; instead, their happiness may co-exist with chronic sorrow” (Douglas
2014 , p. 697).
Patients may exhibit a variety of behaviors when they are grieving, and their
responses are affected by a variety of individual factors (e.g., temperament, person-
ality); personal, family, and cultural beliefs and practices; and religious/philosophi-
cal values (Gettig, 2010 ). Although patients experience and express their grief in
highly individualized ways and will vary in the sequence and timing of their grief
process, the following aspects of grief are fairly common (Gettig 2010 ; Ormerod
and Huebner 1988 ):
- Shock, especially when the loss is unanticipated. The patient may have a great
deal of difficulty accepting the meaning of a diagnosis (cf. Wool and Dudek
2013 ). - Denial that it really happened. “Denial allows a patient or parents to ‘take in’
only what they are capable of handling mentally, emotionally, and physically”
(Gettig, 2010 p. 103). As mentioned earlier in this chapter, genetic conditions
can be so traumatic that individuals will deny their existence. For example,
unless an infant has obvious physical abnormalities, the parents may act as if the
child is fine. A possible counselor response in this situation is: “I get the impres-
sion you think your baby will be fine. Yet, I also heard you say your doctor thinks
your baby has Down syndrome.” Your response allows your patient the opportu-
nity to either stay in denial or move forward. - Making “snap” decisions. Sometimes, people initially deal with their grief by
making rushed and/or extreme decisions. Such decisions usually are based almost
entirely on their emotions in the moment. For example, shortly after the birth of
a child with a genetic condition, a patient tells you she is going to have a tubal
9.3 Patient Affect