Inpatient utilization and disparities: The last year of life of adolescent and young adult oncology patients in California

Abstract

AYA oncology decedents were admitted for 40 days in their last year of life. Subgroups with high utilization had distinct sociodemographic and clinical characteristics, and nonspecialty center admissions increased as death approached. This demonstrates the need for palliative care at nonspecialty centers. Future studies need to determine whether these patterns are goal-concurrent, include high utilizers, and monitor the effects of health care reform. Cancer 2018;124:1819-27. © 2018 American Cancer Society.

Place of death for patients with cancer in the United States, 1999 through 2015: Racial, age, and geographic disparities

“…45 Black patients are less likely to have do-not-resuscitate orders, 46 are less likely to have family care at home, 47 and to have lower rates of use of home hospice. Previous research regarding place of death has been limited primarily to patients aged ≥65 years, omitting young Americans, who may have very different treatment courses and are more likely to receive aggressive care 50,51 and die in a hospital. 49 Unfortunately, there has been little research focused on American Indian patients, who were shown in the current study to have significant place-of-death disparities in home and hospice death.…”

“…Age disparities are poorly studied in terms of hospice use and place of death. Previous research regarding place of death has been limited primarily to patients aged ≥65 years, omitting young Americans, who may have very different treatment courses and are more likely to receive aggressive care 50,51 and die in a hospital. 52 For example, one study using Medicare claims demonstrated that the hospital death rate for patients with cancer was 22% in 2010 53 ; the current study, which included all patients who died of cancer in the United States in 2010, indicated that this rate was higher at 28%.…”

End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice

“…8,32,33 Other factors, including a patient's age, family/cultural ethnicity and preferences, discipline of health care provider, and type of treatment center, may also further influence AYA patients' overall experiences of end-of-life care. 8,[34][35][36] One qualitative study of Mexican oncologists highlighted that they preferred to broach end-of-life topics only once they had determined curative treatment options had been unsuccessful. 34 Although little research has explored this, the timing of these conversations may also vary between diagnosis groups; one article reported that end-of-life discussion for North American AYAs with leukemia/lymphoma was more likely to occur in the last seven days of life, compared to patients with either a solid tumor (89 days) or central nervous system/brain tumor diagnoses (37 days).…”

“…Finally, research highlights the differences in care outcomes that can emerge according to whether end-of-life conversations are held earlier (e.g., before the last 30 days of life or not 35,36,38 ). However, little is known about AYAs' preferences for place of death, or the impact of actual place of death on AYAs' families.…”

“…However, one of the most significant gaps in this domain is research linking the potential impact of discussing various psychosocial and quality of life-related end-of-life topics on AYAs' psychosocial, family, and communication-based outcomes. Given that research has linked the discussion of medical/treatment-related end-of-life preferences to differences in the actual end-of-life care AYAs receive, 35,36,38 it stands to reason that AYAs who have the opportunity to discuss the psychological, social, existential, and quality-of-life-related aspects of their lives may also experience better outcomes in these domains. Future research should explore the impact of these discussions, and the impact of having them earlier in the treatment trajectory.…”