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Hospice Care for Children With Cancer: Where Do These Children Die?
Rachel Thienprayoon1, Simon C Lee, David Leonard
1*Department of Anesthesiology †Cancer and Blood Disease Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH ‡Department of Clinical Sciences §Harold C. Simmons Cancer Center, University of Texas Southwestern Medical Center ∥Children's Medical Center Dallas ¶Department of Pediatrics, Pauline Allen Gill Center for Cancer and Blood Disorders, Division of Hematology-Oncology, University of Texas at Southwestern Medical Center, Dallas, TX.
Insights
Many children with cancer enroll in hospice care. While most die at home or in hospice units, a significant portion disenroll and die in hospitals, impacting end-of-life care quality.
Area of Science:
- Pediatric Oncology
- Palliative Care
- End-of-Life Studies
Background:
- Hospice care is crucial for pediatric end-of-life care, particularly for children with cancer.
- Understanding the location of death for children in hospice is vital for quality of life and parental adaptation.
- Limited data exists on children's hospice enrollment duration and place of death.
Purpose of the Study:
- To describe the frequency of children with cancer remaining in hospice until death.
- To analyze the location of death for pediatric oncology patients enrolled in hospice.
- To investigate factors influencing disenrollment from hospice care.
Main Methods:
- Retrospective subanalysis of 202 consecutive pediatric oncology patients who died at a single center (2006-2010).
- Focus on 95 children enrolled in hospice with known locations of death.
- Data collected on hospice enrollment, duration, and place of death.
Main Results:
- Of 82 children with known death locations, 73% died at home or inpatient hospice.
- 18% died in oncology units, 6% in ICUs, and 2% in emergency departments.
- Median hospice length was 41 days; one-quarter disenrolled, dying in acute care.
Conclusions:
- A majority of pediatric oncology patients in hospice die at home or hospice units.
- A notable proportion of children disenroll from hospice, dying in acute care settings.
- Further research is needed to understand pediatric hospice experiences and reasons for disenrollment.
Abstract:
Hospice is an important provider of end of life care; many children who die of cancer enroll in hospice programs. How frequently such children remain in hospice to die at home, or disenroll from hospice and die in the hospital, has not been described. A child's location of death has important implications for quality of life and parental adaptation. This represents a subanalysis of a retrospective study of 202 consecutive oncology patients who died at a single center between January 1, 2006 and December 31, 2010. Of 95 children who enrolled in hospice, 82 had known location of death. Sixty (73%) died at home or an inpatient hospice unit, 15 (18%) died in the oncology unit, 5 (6%) died in the intensive care unit, and 2 (2%) died in the emergency department. The median length of hospice services was 41 days, twice the national median of 21 days reported in adults. One quarter of children disenrolled from hospice care, ultimately dying in an acute care setting. Further studies are warranted to explore the hospice experience in children, and to address modifiable factors that may impact a family's choice to withdraw from hospice care.
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