P3B010: “my Home Away from Home”: The Role of Community Support in End-of-life and Bereavement Experiences for International Patients and Families

Introduction: Patients who travel internationally for care are a distinct population in pediatric palliative care. Patients with rare and life-limiting diseases not commonly treated in their native country may subsequently face end-of-life issues far from their support systems. While returning home remains an important goal, this is not always possible for patients with high burden of disease or unclear outcome. We highlight a case wherein multidisciplinary healthcare teams and local communities supported a foreign national patient and her family through treatment and end-of-life care, including bereavement following the patient’s death. Her foreign national identity was central in her palliative care and family bereavement.

Case Description: A 20-year-old female who was diagnosed in her native country of Uganda with metastatic alveolar rhabdomyosarcoma sought care at our academic medical center. She underwent multimodality treatment with surgery, chemotherapy, and radiation but unfortunately had disease progression and was transitioned to comfort care. Throughout their 9-month hospital stay, the patient and her family met regularly with our palliative care team with 53 documented visits. Goals of care discussions addressed her preferred location of death and travel limitations for both returning to Uganda or family visiting the United States. These discussions were revisited throughout her admission and worsening prognosis. As the patient neared end-of-life, she was unable to return home due to symptom burden. The family’s Ugandan nationality served as a point of connection throughout their hospital stay: elements from home were incorporated in her palliative care, art/music therapy, and chaplaincy visits, and the family built a support system with frequent hospital visits from the local Ugandan and broader African network. After the patient’s death, these local communities supported the family in bereavement, with her funeral drawing Ugandans from all over the United States. The patient’s perceived community of support was illustrated in a photo album she created showcasing family, healthcare teams, and local visitors, which she continued building through the last weeks of life.

Discussion: Medical teams have gone to admirable lengths to anticipate advance care planning needs and facilitate palliative and hospice services globally. When returning home is not feasible, ample opportunity remains to improve the end-of-life and bereavement experiences for foreign national patients and families. This patient’s foreign heritage remained a central identity that care teams were able to recognize and honor in providing family-centered care during treatment, end-of-life, and bereavement. It served as a point of connection that expanded the family’s community while geographically isolated from prior support systems, and enabled communal support, grief, and healing.

Conclusion: This case illustrates the opportunity for individualized psychosocial care and community support for foreign national patients and families who may be unable to return home at the end-of-life.