Variables Influencing End-of-Life Care in Children and Adolescents With Cancer

Background: As the United States braces for full implementation of health care reform, the eyes of the nation are on Medicaid. The large number of newly eligible Medicaid beneficiaries may challenge health care resources and ultimately impact quality of care. This is a special concern among current Medicaid beneficiaries such as children with complex chronic conditions (CCCs) who have significant health care needs, especially at end of life (EOL). Yet, a comprehensive profile of these children is lacking. Objective: To understand the demographic and health characteristics, health care utilization, and expenditures among Medicaid children with CCCs at EOL. Methods: Our study used a retrospective cohort design with data from the 2007 and 2008 California Medicaid data files. Descriptive statistics were used to profile children in the last year of life. Results: We found a diverse group of children who suffered with serious, multiple chronic conditions, and who accessed comprehensive, multidisciplinary care. Most children had neuromuscular conditions (54%), cardiovascular conditions (46%), and cancer (30%). A majority (56%) had multiple CCCs. Children with CCCs received comprehensive care including hospital inpatient (67%), primary (82%), ancillary (87%), and other acute care services (83%); however, few children utilized hospice and home health care services (26%). Significant age differences existed among the children. Conclusions: The current California Medicaid system appears to provide comprehensive care for children at EOL. The underutilization of hospice and home health services, however, represents an opportunity to improve the quality of EOL care while potentially reducing or remaining budget neutral.

Section: Discussionmentioning

confidence: 99%

A Profile of Children with Complex Chronic Conditions at End of Life among Medicaid Beneficiaries: Implications for Health Care Reform

Lindley

Lyon

2013

“…6,11 From the pediatric perspective, the majority of children who die from cancer die in the initial treatment phase, in the hospital, in an ICU, while still receiving aggressive curative therapies (e.g., chemotherapy). [12][13][14][15][16][17] Preliminary evidence from adolescents at the end of life suggests that they prefer to die at home, yet the vast majority die in a hospital setting. 12 Furthermore, nearly 90% of children and adolescents who die from cancer do so while experiencing two to eight troubling symptoms.…”

Section: Introductionmentioning

confidence: 99%

End-of-Life Care Characteristics for Young Adults with Cancer Who Die in the Hospital

Keim‐Malpass

Erickson

Malpass

2014

Background: Evidence suggests nonelderly adults with cancer are likely to receive aggressive treatment in their last month of life and less likely to receive hospice and/or palliative services. Young adults with cancer (18-39 years) are a unique population, and little is known about the characteristics of their end-of-life care trajectories when they die in the hospital. Objective: The purpose of this descriptive pilot study was to explore the characteristics of death among young adults with cancer who died in a tertiary academic hospital in order to elucidate their end-of-life trajectories. Methods: A retrospective chart review was conducted among hospitalized young adults with a primary cancer diagnosis who died in the hospital within a 10-year period. Study variables were abstracted for quantification and medical record notes were reviewed for validation. Results: A review of 61 patient records indicate that young adults commonly received cancer treatment within weeks of death and that do-not-resuscitate orders were frequently written only when death appeared imminent. Palliative care teams were frequently consulted for management of physical symptoms but often within days of death and most commonly on the day of death. Conclusions: Findings suggest palliative care was initiated late in the care trajectory for young adults with cancer who died in the hospital. This study highlights the need for further inquiry into end-of-life care for young adults with cancer so that interventions can be developed to meet the physical, emotional, social, and spiritual needs of this unique group of patients, their families, and friends.

“…We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. Methods: We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. 2 and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death.…”

Section: Introductionmentioning

confidence: 99%

Race Does Not Influence Do-Not-Resuscitate Status or the Number or Timing of End-of-Life Care Discussions at a Pediatric Oncology Referral Center

Baker

Rai

Liu

et al. 2009

Background: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. Methods: We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. 2 and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who selfidentified as black or white. Results: We found no association between race and DNR status at the time of death (p ϭ 0.57), the proportion of patients with DNR order changes (p ϭ 0.82), the median time from DNR order to death (p ϭ 0.51), the time from first EOLC discussion to DNR order (p ϭ 0.12), the time from first EOLC discussion to death (p ϭ 0.33), the proportion of patients who enrolled in hospice (p ϭ 0.64), the time from hospice enrollment to death (p ϭ 0.2) or the number of EOLC discussions before a DNR decision (p ϭ 0.48). Conclusion: When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.