Case Study #4: The Case of Rivka Cohen
Background
The city that surrounds Rivka Cohen sprawls and towers around her, but the Hasidic Jewish community that she moves in is so tightly knit that it feels like a village. Much of her life revolves around the neighborhood synagogue, her extended family, and their Hasidic Jewish community.
Rivka is six years old. She lives with her parents and four siblings in a house packed closely against her grandparent’s house next door. The Cohen house is awash in the smells of Mrs. Cohen’s cooking, the sounds of Yiddish prayer and conversation, and the laughter of children. The Cohens speak English fluently, but only when they must.
Rivka’s mother stays home full time to care for Rivka and her four siblings, ages 3, 7, 9, and 10. Rivka’s father, Mr. Cohen, works for a family business, and when not working he is usually at the synagogue praying, socializing, and consulting with the rabbi. The family receives Medicaid insurance.
Rivka was diagnosed with cystic fibrosis (CF) when she was twelve months old. At the time, the CF team recommended that her siblings have sweat tests, but her parents declined. The Cohens felt that their children’s health was in God’s hands. Rivka’s condition was stable then, and she and her mother attended regularly scheduled appointments with the CF team. Rivka’s father, while concerned, did not usually come to Rivka’s appointments.
When Rivka was 18 months old, she came to the clinic with an increased cough and weight loss. The team recommended that she be hospitalized. Rivka’s parents initially declined but agreed a week later after her cough had worsened.
At age 4, Rivka again went into the hospital for pneumonia. Mr. and Mrs. Cohen agreed to the admission. Once Rivka appeared to be responding to the IV antibiotics, her parents pressured the team to complete her course of antibiotics at home. Once home, the family continued to give her the antibiotics, but refused visiting nurse services because they did not want the neighbors to know about Rivka’s illness.
When Mrs. Cohen became pregnant with her fifth child, the team strongly suggested that she go for genetic counseling. After discussing the issue with their rabbi, Mr. and Mrs. Cohen decided not to have genetic testing. Again, they felt that, “whatever will be, will be.”
Today in the Clinic
Today, Rivka has come to the clinic for a routine follow-up appointment. This is her first visit since beginning school. Her respiratory status is good, but she’s having more frequent stools. After being questioned, Mr. and Mrs. Cohen admit that they don’t want the school to give Rivka the required enzymes. They haven’t told anyone at school that Rivka has cystic fibrosis. Today Rivka is being seen by the entire CF team, including the doctor, nurse practitioner, social worker, and nutritionist.
Rivka, her mom, and Ana the social worker approach this situation from totally different perspectives
Rivka:
“Back to the doctor again. Why do I seem to go more than my brothers and sisters? Everyone is nice here, but still, I’d rather stay home. I don’t like getting undressed. Or when they have to weigh me and measure me every time. And I really don’t like when they have to take my blood am not even sure why I am here. I know I have to take special pills before I eat. And sometimes I even have to take antibiotics in an IV. And that I cough more than other kids I know. But my mom hasn’t told me what I have. What I do know is that my mommy loves me very much”
Mrs. Cohen
“I knew something wasn’t right when Rivka had more frequent bowel movements. But now that Rivka is in kindergarten, my husband and I stopped the enzymes at school. It is no one’s business that she needs these enzymes. I just figured we could give her extra when she got home at the end of the day. I guess I figured wrong! I understand what the CF team explained…that she needs the enzymes with every meal. It is just nobody’s business. Even Rivka doesn’t know she has CF. Why should she? So she can worry and ask questions we cannot answer? It is God’s will that she has the CF…we will figure out what to do. I will talk to our rabbi; maybe the doctor can talk to him as well. I have to say that the team has been very good about explaining things to me and our rabbi, and very good about understanding our concerns. Like when we found out the enzymes Rivka needs aren’t Kosher. The team understood our dietary restrictions, and spoke to our rabbi. Once the rabbi understood she really needed these pills, he said it was fine. This CF isn’t great, but we will manage. We have faith in God and in our little girl”
Ana:
I knew that Rivka and her mother will show up today. They are always prompt, pleasant and appropriately concerned. Realizing that the parents don’t want Rivka to take the enzymes at school may be a bit of a problem. I know that they are so private about Rivka’s CF and this would draw attention to her personal needs. I am hopeful that after the doctor explains the importance of taking the enzymes with food, the family will agree. This may mean that they will discuss the issue with their rabbi before making a final decision. Our team has really grown to understand how the Cohen’s make medical decisions. Ultimately they do what is best for their child. But given the complexities of having a genetic disease within this closed community, they often seek the guidance of their rabbi. It is really a collaborative approach! I can see that Rivka going to school will raise numerous issues for Rivka and her family. Balancing their privacy with her special needs will be a challenge. I am hopeful that as usual, the family, in communication with their rabbi, will make the decisions that are in Rivka’s best interest
Your group is now hired to help the CF team design a more culturally effective approach to use to better manage Rivka bearing in mind the cultural complexities of her parent’s religious belief.
Discussion
Describe the cultural and religious belief of the Hasidic Jews?
What are the common health belief systems among this cultural community?
What are the health issues are seen in this community?
How important are the social determinants of health as they relate to management of care? Do they relate to cystic fibrosis?
What role does family and religion play in healthcare decision making process in this culture? What other sociocultural factors influences patient outcome in this culture?
Based on your knowledge of The Cohens family culture, what will your group suggest (what model of care) to the CF team to ensure a culturally competent care for Rivka and her family