We have had a long term patient over the years whom the staff had become very attached to. There were many challenging family dynamics. Her parents were in a refugee group here in Wichita, Kansas and migrated from Central Africa and their language was Swahili.
Our patient had CP and short gut syndrome and had been a frequent patient of the Pediatric Service line for many years. She had a beautiful smile and spirit. She was always a happy girl. Her mom loved doing her hair in beautiful braids and also liked feeding her, which required frequent hospitalizations due to aspiration pneumonia. This was how she was able to show love to her daughter and also represented health in their culture.
This last admission proved to be quite challenging. She was admitted and stayed with us until her death, 5 months later. There were ethics consults, family meetings and nurse/physician meetings on how to proceed with the care of this child. Many emotions and our own values challenged her care.
Nicole set up many of these meetings and spent long hours with the parents and locating interpreters to make sure the family was understanding since they both spoke two different dialects of the Swahili language. When the decision was finally made to put her on comfort care, Nicole made sure that everyone was represented at the meeting with the family and also made sure that there was an interpreter who could relay the conversation to both the father and the mother. Nicole then proceeded with the help of our Chaplain group to ensure that the funeral arrangements were made and that the cost was covered for the family prior to her death. She also made sure that she was dressed in a beautiful white gown and that she was wearing a crown per mom's request.
After the death of this patient, Nicole set up a debriefing for the staff so they could meet with our Chaplain and made sure there was some closure around this patient.
The love and care, even though there were times of frustration, was a beautiful testament to our nursing profession and her beautiful spirit.
The nursing and physician team, through Nicole's leadership, have learned and are becoming more culturally sensitive to our patients and their families while trying to maintain medical care.