More than half of children with cancer die in the hospital
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Key takeaways:
- Children with cancer died at home less often than adults.
- Rates of in-hospital deaths varied by race and ethnicity.
Children with cancer died at home less often than adults, according to study results.
Children with racial or ethnic minority backgrounds more often died in hospitals than non-Hispanic or white children, results showed.
Researchers from multiple institutions analyzed trends in the place of death for children diagnosed with cancer between 2003 and 2020.
Investigators used data from the CDC Wide-Range Online Data for Epidemiologic Research (CDC WONDER) database to evaluate correlations between place of death and key decedent characteristics — including age, sex and race — for ICD 10 codes C00-C96 and D00-D49, which cover the most common causes of cancer mortality in children and adolescents.
The analysis included 36.889 children (mean age, 10.64 years; 56.1% male) who died of cancer. About half (52%) died in the hospital, 39.3% died at home, 6.1% died in outpatient medical facilities, 2.2% died in hospice and 0.5% died in nursing facilities.
Compared with white children, those of other races appeared more likely to die in the hospital. The difference appeared statistically significant for Asian (OR = 1.79; 95% CI, 1.62-1.97) and Black children (OR = 1.6; 95% CI, 1.51-1.7) but not American Indian children (OR = 1.11 (95% CI, 0.91-1.36).
White children died at home at a significantly higher rate than Black (OR = 0.49; 95% CI, 0.46-0.52), Asian (OR = 0.52; 95% CI, 0.47-0.58) or American Indian children (OR = 0.64; 95% CI, 0.52-0.79).
Compared with non-Hispanic children, Hispanic children appeared nearly twice as likely to die in the hospital (OR = 1.88; 95% CI, 1.78-1.97) and about half as likely to die at home (OR = 0.51; 95% CI, 0.48-0.54).
Overall, children aged 5 to 9 years died in the hospital less frequently than those aged 1 to 4 years (OR = 0.74; 95% CI, 0.7-0.79).
“We hope this study galvanizes qualitative exploration of the nature of death for pediatric patients with cancer,” researcher Edward Christopher “Chris” Dee, MD, resident physician in radiation oncology at Memorial Sloan Kettering Cancer Center, told Healio. “What does it mean for a child to ‘die well?’ How can we help patients who are dying experience death in a way that is concordant with their goals and values?”
Healio spoke with Dee about the findings, the potential explanations for these trends and the need for more research on this topic.
Healio: What motivated you to conduct this study?
We know there are differences and disparities across the spectrum of cancer care. However, less is known about disparities at the end of life — particularly for pediatric patients with cancer. We recognize that place of death is only one factor that can contribute toward what it means to have a "good death," and that such decisions ultimately should be individualized for each patient's specific needs and preferences. However, population-based data may give us insight into how to better frame, ask, answer and respond to questions about disparities for pediatric patients with cancer.
Healio: How did you conduct the study?
Dee: We used publicly available CDC WONDER data, which represent national mortality and population information. The data are de-identified but do include information regarding age, ICD-10 code associated with cause of death, and location of death. Most other details are not included to protect patient privacy. This database is the perfect way to analyze trends in place of death over time in the United States.
Healio: How does the rate of deaths at home among children compare to that of adults, and why may they be different?
Dee: We found lower rates of death at home among children when comparing the findings of this study to findings from prior studies. Our prior work suggests an increase in home and hospice deaths among various groups of adult. Although not directly explored in our study, these findings may be due in part to the complexity of death of a child — including the immensity of the emotions and human suffering involved. The great challenges patients and families face may be better addressed in the context of a health care system or hospital. We underscore, however, that location of death ultimately should be personalized. Our role as care providers is to elicit those preferences and to help patients achieve those goals — that is, death that is consistent with their values and preferences.
Healio: What are the potential implications of these findings?
We hope this work stimulates research that is inclusive in scope and considers the experiences of patients who are minoritized on the basis of race, ethnicity, language, religion or other factors. The differences or disparities demonstrated in our paper should invite further exploration of whether what it means to ‘die well’ is different across cultures in the U.S. and globally.
Healio: What advice would you offer oncologists?
Dee: Always keep patients and families at the center of conversations about death. We must do our best to ascertain and help to support end-of-life goals. We also must be mindful that what it means to have a "good death" for us may not be congruent across cultures or based on one individual’s preferences. It is not our job to impose our own values; rather, we need to help patients at the end of life experience deaths that are consistent with their values.
References:
For more information:
Edward Christpher “Chris” Dee, MD, can be reached at deee1@mskcc.org..
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