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Hospices can effectively care for terminally ill children, but require specialized approaches. Key differences include prioritizing family support, emphasizing home care, and increasing education on childhood death.
Area of Science:
- Pediatric Palliative Care
- Thanatology
- Health Services Research
Background:
- Current healthcare models inadequately address the needs of terminally ill children and their families.
- Pediatric hospice care requires unique considerations compared to adult hospice services.
- A 1979 feasibility study informed the understanding of these specialized needs.
Purpose of the Study:
- To identify the specific characteristics and needs of hospice care for terminally ill children.
- To evaluate the feasibility and appropriateness of hospice models for pediatric end-of-life care.
- To highlight areas for improvement in pediatric terminal care services.
Main Methods:
- Analysis of statistical data from a pediatric hospital feasibility study.
- Confidential interviews with healthcare professionals in hospital and community settings.
- Qualitative and quantitative data synthesis to identify care gaps and requirements.
Main Results:
- Existing services are insufficient for terminally ill children and their families.
- Hospice care is as suitable for children as for adults, with distinct emphasis areas.
- Family support, home care facilitation (e.g., day care), and education are critical components.
Conclusions:
- Pediatric hospice care necessitates a strong focus on comprehensive family support due to profound grief.
- Home-based care, augmented by services like day care, is crucial for pediatric patients and their families.
- There is a significant need for enhanced professional and public education regarding childhood terminal illness and bereavement.
- Further research is essential across all facets of pediatric terminal care.
Abstract:
This paper identifies the special characteristics needed by hospices caring for terminally ill children. It is based on a feasibility study conducted in 1979 for a pediatric hospital in New York City. From the analysis of statistical data and confidential interviews with health care professionals in the hospital and in the community, the study concludes that the needs of terminally ill children and their families are not being met currently and that the hospice is as appropriate for children as for adults. Three major differences in emphasis are noted, however. First, support of the family suffering the death of a child is of prime importance, because the grief is devastating and long lasting and because the number of family members affected is usually large. Second, the hospice emphasis on home care is even more imperative for children than for adults as it more significantly benefits both child and family; home care can be facilitated through supplementary care components such as day care. Third, there is a major need for both professional and public education in caring for terminally ill children and their families and in coping with childhood death. The author concludes that further research is needed in all aspects of pediatric terminal care.
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