Emily Johnston, MD, MS, thinks about death a lot.
“I wish we would stop saying people ‘lost a battle’ with cancer when someone dies,” she said.
Emily Johnston, MD, MS
Dr. Johnston specializes in pediatric oncology at Children’s of Alabama hospital. Conquering cancer, she believes, doesn’t simply mean surviving it—it should also include spending one’s final days with dignity.
“It is not about how hard a child and their family fought; it is about cancer being a hard disease to treat. Instead, many families fought to give their child high-quality time—time at Disneyland or with their siblings, to make their child comfortable, and to make sure their child knew they were loved,” said Dr. Johnston.
With support from the Women Who Conquer Cancer (WWCC) Career Development Award (CDA) from Conquer Cancer®, the ASCO Foundation, she is exploring ways to improve end-of-life care for children dying of cancer—the majority of whom, she explained, die in a hospital.
Though her study is in its early stages, Dr. Johnston is examining end-of-life care disparities for children with cancer and discovering ways to better support children, families, and caregivers.
“There are two patient experiences that have stuck with me for years. One was a teenager with relapsed cancer who’d been taken all over the country for phase I trials. He wanted to go back home and die, but his parents were [the ones] able to make decisions. Instead, he died in the intensive care unit after hours of compressions he did not want,” recalled Dr. Johnston. “I also remember, often, a toddler whose family wanted to get hospice involved as soon as her cancer relapsed, so they could establish relationships upfront. Hospice had a volunteer come to their house a few times a week to play with her older brother, so he got plenty of attention. She died at home surrounded by family.”
In her work, Dr. Johnston interviews bereaved parents, her peers in pediatric oncology, and hospice providers to assess their perspective on home vs hospital deaths. There is no scientific standard for a good death, but research has improved end-of-life cancer care for adults, most of whom prefer home hospice care, she said. Dr. Johnston’s study is an important step in providing the same expertise for pediatric patients.
“I think a lot about whether the teen and the toddler had good deaths, because each experience was what both sets of parents wanted,” Dr. Johnson said. “Many parents who lose children want desperately for their kids’ deaths to help others, so they are very interested in participating in research. Having metrics for end-of-life care will help us improve overall quality and create the standards of care. Better understanding which patients prefer to die at home and which prefer to die in the hospital will also help us better counsel families facing the death of their child.”
© 2019. American Society of Clinical Oncology. All rights reserved.