Nearly two-thirds of children and teens with terminal cancer receive intense care at the end of life, often in hospitals and intensive care units, a U.S. study suggests.
Certain patients, including kids under age 5 and teens aged 15 to 21 as well as ethnic minorities and patients with blood malignancies were more likely to receive aggressive care than other children, the study also found.
“The rates of medically intense end-of-life care we found in our study and the disparities we found raise the question: Are we providing a palliative approach to end-of-life care for these patients?” said lead study author Dr. Emily Johnston of Stanford University School of Medicine in California.
“I hope this study makes pediatric oncologists and others taking care of these patients reflect on the end-of-life discussions they are having, particularly with these high-intensity groups,” Johnston said by email. “I also hope it lets families experiencing the loss of a child due to cancer know that there are different ways for that death to happen, so they can think about and advocate for what is best for their child and their family.”
Many adult patients with cancer who know they are dying choose less intense care, and aggressive treatment is associated with worse outcomes for families and caregivers, Johnston and colleagues write in Pediatrics. But less is known about treatment choices for children, Johnston told Reuters Health.
For the current study, researchers examined data on 3,732 patients age 21 years or younger who died of cancer in California from 2000 to 2011.
Researchers examined the intensity of medical interventions at the end of life by looking at how often patients had cardiopulmonary resuscitation (CPR), intubation, intensive care unit (ICU) admissions or dialysis within 30 days of death. Researchers also looked at how often patients had intravenous chemotherapy within 14 days of death and how many patients died inside hospitals.
Overall, 63 percent of patients died inside hospitals and 20 percent were admitted to ICUs.
Children were more likely to receive aggressive interventions at the end of life when they lived closer to a hospital, or when they received care at a hospital that wasn’t a specialized cancer center, the study found.
One limitation of the study is that the results also may not reflect what would happen outside California, or represent more recent trends in end-of-life care, the authors point out. Researchers also lacked data on how patient and family preferences or other factors might have influenced care decisions.
“We do not know a lot about how the end-of-life experience of children impacts on family bereavement outcomes,” said Dr. Joanne Wolfe, co-author of an accompanying editorial and director of pediatric palliative care at Boston Children’s Hospital.
“Some earlier studies have shown that the child’s experience of pain impacts bereaved parents’ long-term outcomes including anxiety and depression,” Wolfe said by email.
Communication is also key, said Dr. Kim Beernaert of Ghent University and Vrije Universiteit Brussel in Brussels, Belgium.
“We know that communication and information about decision making, treatment options, prognosis etc. is very important for how bereaved parents cope afterwards,” Beernaert, who wasn’t involved in the study, said by email.
With the right information and support for parents and families, many children who die in a hospital might be able to die at home instead, said Dr. Amos Bailey of the UCHealth Palliative Care Clinic at the Anschutz Cancer Pavilion in Aurora, Colorado.
“However, it is physically and emotionally challenging to care for a loved one in the home through death, and parents and children may feel more comfortable and safe in a hospital where it is likely they have been admitted before and come to trust and depend on staff,” Bailey, who wasn’t involved in the study, said by email.
“It will be important to understand if more parents or children would want to die at home or out of a hospital if they were supported,” Bailey added.
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