Abstract
A three-year-old Yazidi girl named DS was among the many refugees who arrived in Germany between 2015 and 2016. Seven months before her arrival, she was diagnosed with hepatoblastoma in Iraq and was treated with five cycles of chemotherapy. Soon afterward, she and her mother fled Iraq, whereas her father and two brothers remained scattered across Iraq. By the time she arrived in a refugee camp in Germany, her tumor had spread throughout her abdomen and lungs. Due to the extent of her disease, surgery was not an option, but she was treated in our pediatric oncology center with additional chemotherapy. Unfortunately, the tumor did not respond. We transferred her to our inpatient pediatric palliative care unit together with her mother, and distant relatives and friends from the German Yazidi community accompanied them.
DS was born in rural northern Iraq. Despite the language barrier, we managed to adapt to each other's cultural nuances. Her mother told us vividly about her village customs. After some time, we even celebrated DS's birthday in the ward. But with her disease progressing, DS became weaker and her mother fell into utter despair. Even other women from her Yazidi community could not lift her spirits.
Then, one spring morning, DS passed away. Although her death was expected and she died peacefully with no noticeable suffering, her mother and female relatives immediately started crying, wailing, and tearing at their hair. DS's mother collapsed and vomited. The mourning was a sudden outbreak of emotion, more intense than anyone in the ward expected. Everyone on our team from the nurses and doctors to the psychologists and social workers was shaken. We were torn between wanting to stay with the bereaved to support them and being overwhelmed by the power of their lamentation.
We realized that even as an experienced team trained in palliative care, we simply could not endure much longer. We decided to implement shifts for staying in the room with the bereaved: shifts of eight minutes. After eight minutes, the team member in the room was gently relieved and another staff member took his place to support DS's mother and family. After eight minutes, staff members needed to center and regain their strength before they were ready to go back into the room and provide support. After three hours, the heightened expression of mourning decreased and wailing settled into crying, shouts quieted to whimpers, and DS's mother could lay her down on the bed.
Providing emotional support for grieving parents while managing the emotional strain of the job is everyday practice for caregivers in palliative care. When additional cultural factors that health professionals may be not accustomed to come into play, this balance may be destabilized. In our case, being confronted with a culturally different and intense way of mourning caused substantial emotional stress for the team in our pediatric palliative care unit, temporarily impairing our functional and professional abilities.
Our solution to cope with this sudden emotional stress was the implementation of shifts of only eight minutes. It turned out that this was the maximum time for the team members to stay operational and in control of their emotions. In retrospect, the team acknowledged this strategy as a useful way to manage the situation, and gives us the confidence to deal with similar challenges in the future.
For professionals in palliative care, this story is offered as one of many possibilities for retaining the emotional balance and functional abilities of a team, while honoring the cultural rites of mourning families. In addition, this brief reflection may serve as an example of how deep our cultural imprint runs and how much work may be needed to be truly respectful.