Our Team (PI:Lisa Lindley) received multiple awards (R01, R56, administrative supplements) from the National Institutes of Health/National Institute of Nursing Research (NINR) to examine pediatric concurrent hospice care. The overall goal was to understand the impact of concurrent hospice care compared to standard hospice care in improving pediatric end-of-life outcomes. This project provided the much needed higher-level evidence about care delivery models by conducting a sophisticated and methodologically rigorous analysis of administrative data (e.g., Medicaid data). We created an unique nationally-represented data set stemming from the first-ever longitudinal investigation comparing the effectiveness of pediatric concurrent care versus standard pediatric hospice care to improve pediatric and family outcomes.
Although standard hospice services offer a family-centered model of care that can assist with symptom management, psychosocial care, respite, and bereavement support for the family, more recent care delivery models such as concurrent hospice care offer children and families additional support. Standard hospice care requires that a patient has a 6 month-to-live prognosis and discontinues all care related to their advanced, serious illness. Conversely, concurrent hospice care allows children and families the option to continue life-prolonging care while enrolled in hospice. The primary goal of concurrent hospice care is enabling pediatric patients with life expectancies of six months or less to transition more smoothly from life-prolonging care focused on comfort and quality of life. Life-prolonging care is defined as curative therapies, treatments, medications, and equipment related to the advanced, serious illness that postpones death. For example, a life-prolonging care need for a child with cancer at end of life might be the continuation of chemotherapy to reduce tumor size and provide pain relief. Life-prolonging care would be delivered by a non-hospice provider such as a pediatrician or pediatric specialist. Under the 2010 Affordable Care Act, Section 2302, all state Medicaid and Children’s Health Insurance Program (CHIP) plans including fee-for-service and managed care plans are required to provide pediatric concurrent hospice to eligible beneficiaries (i.e., under 21 years, 6-months to live prognosis).
There is a critical need for research focused on understanding the end of life prolonging care (EOLPC) needs of children and adolescents with serious, advanced illness. Our team is active in identifying, describing, and examining patterns of life prolonging care needs among children and adolescents in concurrent hospice care, using a comprehensive national Medicaid database. Our research provides the first-ever scientific investigation of concurrent hospice care using national data and sophisticated Big Data analytics.
The primary goal of concurrent hospice care is enabling pediatric patients with life expectancies of six months or less to transition more smoothly from life-prolonging care focused on comfort and quality of life.
R01 Parent Grant Award:
National Institutes of Health National Institute of Nursing Research R01NR017848
Effectiveness of concurrent care to improve pediatric and family outcomes at end of life
Bioethics Grant Award:
National Institutes of Health National Institute of Nursing Research R01NR017848 (Administrative supplement to Parent R01 award)
Effectiveness of Concurrent Care to Improve Pediatric and Family Outcomes