There’s No Place Like Home: Honoring Death Location Preference with Palliative Transport

Introduction: Limited research has been conducted on death location preference in the pediatric population; consequently, investigating patient and family preference is critical, as some prefer home as a death location for their children and may be unaware of this possibility. Interdisciplinary coordination can help medical providers honor these wishes.

Case Description: Baby Z is a 10-month-old male, hospitalized due to worsening cancer in the setting of no available curative options. Throughout his disease trajectory, his mother’s stoicism was misunderstood for lacking prognostic awareness. However, she recognized that these new symptoms were due to his disease worsening. She lovingly chose to protect him from cardiopulmonary resuscitation while hoping other interventions might improve quality of life. Despite these efforts, his symptoms intensified. When told Baby Z was dying, his mother shared her wish for Baby Z to die at home, 135 miles away. Through interdisciplinary collaboration, the pediatric palliative care (PPC) physician quickly arranged for same-day home transport: bedside nursing provided memory making, pleural drain and central venous line care, and pre-medications; oncology assisted with prescriptions; pharmacy provided en-route comfort medications; and transport services recommended essential personnel and coordinated preferred ambulance for palliative transport. Transition of care to a local hospice was completed upon destination arrival, where the nurse’s presence allowed for timely handoff and, importantly, seamless symptom control. They later provided anticipatory guidance of the dying process. Baby Z died within 24 hours of arrival at home, surrounded by his family. During a bereavement call, his mother endorsed relief that Baby Z was home for his death.

Discussion: The signs and symptoms of actively dying children must be recognized and communicated effectively to families. Transparent communication allows families the opportunity to share death location preference. When home is preferred, transport can be difficult to arrange given complex care plans and unpredictable timelines for dying patients. Detailed checklists can aid in successful transport planning, which may include the following: memory making; spiritual care; anticipatory guidance; en-route comfort medications; equipment; formula and diapers; reviewing destination conditions, such as paved roads, parking access, and large pets; and assessing if any present family members disagree with the care plan. As such, interdisciplinary coordination can aid in smooth and quick transition from hospital to home.

Conclusion: Given limited research on death location preference, providers should maintain open and transparent communication as the dying process is assessed, which may allow for early identification of death location preference. Interdisciplinary teams should be ready to assist in transition of care from the hospital setting to the home in order to best meet the needs of a dying child and their family.