Case #3 Version 1

Assume for this case you are the social worker for an adult internal medicine clinic. Dr. Z, a pulmonary medicine specialist refers one of her cystic fibrosis patients to you for counseling. What follows is the available information dictated to you as a part of the referral:

"Thanks for agreeing to see this patient. Janet is a 24 year old mother of two children, John aged 4 and Anita aged 2. I have been following her since her pediatrician referred her to adult medicine when Janet turned 18. At the time Janet was referred to me, she was moderately affected by her cystic fibrosis (her lung capacity was 70% of predicted), and against my advice she chose to have children. Although I cannot say the course of her disease was accelerated by the pregnancies, it seems apparent to me that the demand of parenting her two children have been highly detrimental to her ability to get adequate rest and stay with a demanding disease management regime. At the current time, Janet's pulmonary capacity has deteriorated to 55% of predicted capacity, her bouts of hospitalization are becoming more frequent, and she is rapidly approaching the point of candidacy for a lung transplant. Janet and I have discussed her prognosis for this surgery, and although she is a favorable candidate for the surgery her prognosis for survival beyond the next few years is guarded at best. I think someone needs to talk with Janet about her future plans for her children, and I feel personally ill-equipped to do so. On this basis and my personal confidence in you Janet has agreed to begin these conversations, her primary concerns are how she might prepare her children for her death. Although Janet is a very determined and basically optimistic person, she acknowledges that the odds of her surviving long enough to raise her children are not good. What makes this conversation particularly difficult is that we cannot really predict the course of her illness: she may die from an uncontrollable lung infection or bleed in the next year, may slowly deteriorate over the next 5 years, survive a lung transplant and live into middle and even old age, or not survive the lung transplant surgery.

I wish I could tell you more about Janet's social history and family situation. I know that she worked part-time at a library up until the birth of her second child, and that she attended community college for two years. Although I see Janet frequently, her husband rarely accompanies her and she tells me that her younger sister (a community college student) provides child care during her clinic visits. Janet describes her husband as a workaholic who has become even less present at home as her disease has progressed. Janet lists her religion as Jewish, but she has never discussed her convictions or beliefs with me. Janet's parents are still living, but I have not met them and I am under the impression that they are not involved much in the care of Janet's children. Again, thanks for agreeing to see this patient."