High Intensity of End-of-Life Care Among Adolescent and Young Adult Cancer Patients in the New York State Medicaid Program

Abstract

Background Little is known about the care that adolescent and young adult (AYA) cancer patients receive at the end-of-life (EOL). Objective To evaluate use of intensive measures and hospice and location of death of AYA cancer patients insured by Medicaid in New York State. Design Using linked patient-level data from the New York state cancer registry and state Medicaid program, we identified 705 Medicaid patients who were diagnosed with cancer between the ages of 15 and 29 in the years 2004–2011, who subsequently died, and who were continuously enrolled in Medicaid in the last 60 days of life. We evaluated use of intensive EOL measures (chemotherapy within 14 days of death; intensive care unit care, >1 emergency room visit, and hospitalizations in the last 30 days of life), hospice use, and location of death (inpatient hospice, long-term care facility, acute care facility, home with hospice, home without hospice). Results 75% of AYA Medicaid decedents used at least one aspect of intensive EOL care. 38% received chemotherapy in the last 2 weeks of life; 21% received intensive care unit care, 44% had >1 emergency room visit, and 64% were hospitalized in the last month of life. Only 23% used hospice. 65% of patients died in acute care settings, including the inpatient hospital or emergency room. Conclusions Given high rates of intensive measures and low utilization of hospice at the EOL among AYA Medicaid enrollees, opportunities to maximize the quality of EOL care in this high risk group should be prioritized.

Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life

“…Compared to younger children, AYA oncology patients have higher rates of hospitalization, more frequent Intensive Care Unit (ICU) admissions, and receive more chemotherapy treatments during the last 30 days of life. (8, 9) Likely due, in part, to the intensity of treatment received at the EOL, AYA oncology patients also experience a myriad of physical and psychological symptoms, and many of these symptoms are poorly recognized, understood, and treated. (10–13) Control of symptoms in pediatric and AYA patients at the EOL is important as parental perceptions of suffering are associated with distress (14) and may complicate parental bereavement.…”

End-of-Life Transitions and Hospice Utilization for Adolescents

“…Meanwhile, the number of youth with life-limiting conditions is increasing, and determining appropriate end-of-life care transitions (meaning transitions between multiple care providers and environments of care) can be particularly challenging secondary to the increased intensity of service provision and clinical uncertainty that occur during the time period preceding death. 3–6 Thus, adolescents represent a particularly vulnerable population at the end of life.…”

“…Nearly three-forths of young people who die do so in an acute or intensive care setting without comprehensive palliative or hospice care management and are at risk for numerous burdensome transitions between multiple providers at the end of life. 3,5,7–11 To this end, the holistic model of care that hospice provides represents an opportunity for patient- and family-centered end-of-life care for young people. 12–14 Hospice care offers a comprehensive approach to end of life for those with life expectancy of 6 months or less, which incorporates symptom management, psychosocial and spiritual needs, life review, and continued goal setting.…”

End‐of‐life care among adolescent and young adult patients with cancer living in poverty

“…Specifically, as young patients cope with a poor prognosis, they also must face profound losses, including the inability to find partners, nurture families and careers, and grow old. 10,11 Poverty compounds the challenges faced by AYA patients in the United States; approximately one-fifth of young adults in the United States live in poverty. [6][7][8][9] Patients, caregivers, and even clinicians experience young people's deaths as tragic events and departures from the natural order of life.…”