Providing Hospice Care for Children: An Organizational Study It is estimated that approximately 90% of children who may benefit from hospice care never receive it, and as few as 40% of hospice organizations such as community-based hospice and home health agencies offer care to children. Yet, little is known about the organizations that provide hospice care to children, although they are a critical determinant to access of hospice care. Even though the physical and psychosocial benefits of using hospice care are well-supported in the literature, children's'lack of access to hospice care is a cause for concern. However, fundamental knowledge about hospice organizations that provide care to children is lacking. We do not know where care is provided by hospice organizations, the types of organizations providing hospice care to children, and the types of services offered to children and their families, and how these may have changed over time. This is increasingly important given the trend of terminally ill children returning home to die. Improving our understanding of hospice organizations is critical to expanding access to hospice care for children. In addition, there is emerging evidence that institutional pressures faced by hospice organizations may influence whether care is provided to children. At the same time, hospice organizations face financial performance pressures to generate revenues and manage expenses related to high-cost patient populations such as children. These institutional and financial pressures can conflict and affect whether or not hospice organizations provide care to children. In our dynamic health care environment, these relationships can change over time. Understanding the relationships between institutional and financial pressures and their impact on provision of care to children is critical to expand access to hospice care. Therefore, the proposed study seeks to describe the provision of hospice care to children, and to examine the effects of institutional forces and financial performance on provision of hospice care to children while controlling for organizational and market factors. This study will employ a retrospective, longitudinal design that utilizes data from the California hospice and home health agencies between the years 2002 through 2008. The unit of analysis is the hospice organization. Two analyses will be conducted: one descriptive analysis, one multivariate generalized estimating equations (GEE) regression analysis. By investigating hospice care for children, this study will target an AHRQ priority population, and address the AHRQ strategic goal of improving access to care. This study will have significant policy relevance and impact. The findings of the proposed organizational study will inform the development of policies aimed at expanding access and delivery of hospice care for children. Therefore, understanding and improving access to hospice care will offer terminally ill children and their families the opportunity to receive comprehensive and individualized care that promotes comfort, peace, and dignity at the end of life.
This study will have significant policy relevance and impact, as several states have debated eliminating hospice care from Medicaid programs, while others have trimmed services and delayed payments;and as unemployment worsens, more families are losing their employer-sponsored health insurance, including hospice benefits (Holahan &Garrett, 2009;Johnson et al., 2008;Johnson et al., 2010;Tuch, 2009). These changes create an uncertain funding environment for hospice organizations, especially for those that provide care for children. The findings of the proposed organizational study can inform the development of policies aimed at expanding access and delivery of hospice care for children.
| Lindley, Lisa C (2013) Trends in services among pediatric hospice providers during 2002 to 2008. Am J Hosp Palliat Care 30:68-74 |
| Lindley, Lisa C; Mark, Barbara A; Daniel Lee, Shoou-Yih et al. (2013) Factors associated with the provision of hospice care for children. J Pain Symptom Manage 45:701-11 |
