Addressing Child Custody Concerns of Parents with Life-Limiting Illness

Custody concerns are a major source of psychosocial distress among single parents with life-limiting illness. Although children are increasingly living in diverse household structures, the current health care system is not designed to meet the unique needs of single parents or nontraditional families. Patients with unaddressed custody concerns can experience psychological suffering during treatment and at the end of life. Lack of clarity and resolution regarding guardianship may also result in additional hardship for their grieving children. We present the case of a 36-year-old-female with metastatic breast cancer, who was the single mother of four children. Despite significant concerns about her children's well-being, the patient did not complete legal guardianship processes. She experienced immense distress at the end of her life due to an unresolved custody plan. This case demonstrates the need for addressing custody and guardianship concerns with seriously ill patients early in the illness trajectory. While clinicians need not become experts on custody and guardianship themselves, understanding the impact of custody concerns-and the barriers to their resolution-can substantially improve end-of-life care for patients and better equip surviving family for the changes that lie ahead.