Thinking Outside the Box: Meeting Parents Where They Are, in Places You Thought You'd Never Go

Introduction: Children who die of cancer often receive hospice services. This maximizes the likelihood of a peaceful death at home and honoring the child’s and family’s preferences for EOL care. One barrier to hospice care is the perception that acceptance of hospice services is congruent with “giving up” hopes for a cure and prolonged life.

Case Description: A 6 year-old boy with high risk, multiply recurrent neuroblastoma was followed for nearly 3 years by the pediatric palliative care (PPC) team at our center. At initial relapse, he was treated at a different center, far from home. With subsequent relapses, per his parents' preference, he received cancer care at yet another, distant hospital, returning home between treatments. This limited our PPC team’s ability to assess and treat his symptoms and support his family in person. Significant symptoms over the last 2 years of his life were cancer pain, nausea, vomiting, constipation, and anorexia. The family’s goals were to continue to treat his cancer with as little toxicity as possible and achieve remission. The oncology and PPC teams perceived that he was suffering from many of the treatments, but his parents were not open to stopping cancer directed therapy nor involving hospice when these options were offered on several occasions. There is no mechanism for children <18 years of age to have an outpatient Do Not Resuscitate (DNR) order in Wisconsin, thus, we typically create a community DNR letter for children who are not receiving hospice services near the EOL. This patient’s parents declined our offer to provide such a letter. PPC staff consulted with the county medical examiner (ME) and learned that a full investigation into the patient's death would likely ensue if this child were to die at home without hospice, but that an investigation might be avoidable if a physician from the PPC team were available to pronounce the child dead in the home. Per the ME, having a letter describing the child’s case in advance would be helpful, however, the parents denied permission to provide medical information to the ME. Ultimately, the patient died peacefully at home and a PPC physician and nurse practitioner traveled to his house to pronounce death and facilitate transfer of the body to a funeral home.

Discussion: Coordinating care for a child dying at home without hospice services felt unfamiliar. We worried that the child might suffer unnecessarily at EOL, and that his family might be traumatized by a formal investigation into the cause of his death.

Conclusion: Although the care provided to this child felt fragmented to the PPC and oncology teams, the PPC team's persistence in addressing his needs provided continuity and flexibility, which led to a peaceful death at home on the family’s terms.