Impact of Race and Ethnicity on End-of-Life Experiences for Children With Cancer

Abstract

Background: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood. Objective: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer. Methods: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015. Results: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity. Conclusions: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

“…Of the 42 included studies, 11 examined the impact of specialist paediatric palliative care, 44,48,57,58,62,64,66,70,73,74,88 14 explored factors affecting access 23,43,45,56,65,68,71,75,76,[78][79][80][81][82][83]89 and 17 studies investigated both 46,47,[49][50][51][52][53][54][55][59][60][61]63,67,69,72,77,[84][85][86][87]90 (see Table 1 for study characteristics). Using the MMAT, 25 studies were categorised as quantitative non-randomised, 12 as quantitative descriptive and 5 as qualitative stud...…”

Clustering of 27,525,663 Death Records from the United States Based on Health Conditions Associated with Death: An Example of Big Health Data Exploration

“…A US study showed that black children dying from cancer more often received CPR than white children. Hispanic children less frequently received cancer therapy 28 days prior to death than non-Hispanic children [31]. Moreover, palliative care clinicians seem more reluctant to discuss prognosis with black or Latino patients with cancer than with white patients [32].…”

“…Moreover, palliative care clinicians seem more reluctant to discuss prognosis with black or Latino patients with cancer than with white patients [32]. Several explanations for these racial differences have been hypothesized, including differences in preferences regarding life-sustaining treatments, but also a lower likelihood of end-of-life preferences being discussed and honored [31].…”

Palliative care considerations and practices for adolescents and young adults with cancer

“…[22][23][24] Furthermore, these factors may also play a part in how AYAs and their families view illness, death, the medical system, and decisions 25,26 about the care provided at EOL. 27,28 Developmentally, it is appropriate for AYAs to start exploring what values and belief systems are important to them, which may differ from those of their family of origin. With these important elements at play, health care providers should educate themselves and seek to provide culturally humble care to ensure that AYAs' wishes are considered.…”

“…For many patients and families, being given the choice to plan is just as important as the location itself. AYA patients most often prioritize their relationships with others when making EOL decisions, in addition to directing their medical treatment, defining their care plans, the information their family and friends receive, and how they wish to be remembered 5–57,59–61 . Parents of critically ill children who planned the location of death achieved a home death 72% of the time compared to only 8% of those who did not plan 46 .…”