Despite an increased focus on pediatric palliative and supportive oncology services in the United States, children with cancer may not be receiving high-quality end-of-life care.
Many children with advanced cancer report incredible pain, fatigue and nausea near the end of life, and more than 60% of children with cancer die in hospital, despite evidence that most families prefer to be at home .
Given this degree of unrelieved suffering, “there is an urgent need to compare the quality of [end-of-life] caring for children with cancer and participating in quality improvement initiatives,” write Emily Johnston, MD, MS, and colleagues in a recent comment published in Cancer.
Although there are almost 200 end-of-life quality measures focused on adults, there are only two specific to pediatrics, and both involve pain assessment in the ICU.
“None of the existing measures target seriously ill children who are close [end of life]which is problematic,” write Johnston, of the Cancer Survival and Outcomes Institute at the University of Alabama at Birmingham, and co-authors.
In their commentary, Johnston and colleagues propose a series of quality measures for end-of-life care for children with advanced cancer, divided into six domains:
Interdisciplinary care: assessment of financial needs and challenges, as well as psychological support for the child and family, palliative care and/or hospice services, and bereavement services after the death of the child.
Hospital policies and programs: remove restrictions on visiting hours, age and number at the end of life
Avoidance of medically intensive care at the end of life: forego intubation in the last 4 days of life, two or more emergency department visits in the last 30 days of life, and death in the intensive care unit
Meet patient preferences: provide end-of-life and place-of-death care that adheres to the wishes of the child and/or family, use home care to reduce travel time and length of stay in the hospital, and have a documented advance care plan. in the last 30 days of life
Communication: Providing advance guidance to families about the dying process and ensuring that families feel that the health care team is listening to their child’s needs, as well as communicating preferences directly with the child and family about prognosis and attention.
Symptom management: detection and management of physical symptoms during a health care visit in the last 30 days of life
These quality measures should be viewed as “an important first step” in evaluating end-of-life care for children with cancer, which requires further refinement, the authors note.
“There is a clear need for improvements in the care of dying children with cancer,” said Holly G. Prigerson, PhD, director of the Cornell Research Center for End-of-Life Care, Weill Cornell Medical College in New York City. , who was not involved in the comment.
Although this article advocates better articulating and measuring indicators of quality of care, as with most things, “the devil is in the details,” says Prigerson.
For example, she thinks symptom management metrics only scratch the surface.
“There is a great need for more nuanced assessments of psychological symptoms and measures that distinguish them from physical symptoms as a child’s life comes to an end,” he said. Medscape Medical News. “This is by no means child’s play! The field should learn from the work done to date in adults, but it will need major revision to be appropriate and impactful for children.”
Although most children with cancer do fairly well, cancer is the leading cause of predictable or early death in children, says Chani Traube, MD, a pediatric intensivist at Weill Cornell Medicine and NewYork-Presbyterian in New York City. York.
Given that, “one would think that only a small minority would die in my ICU, intubated and ventilated, with ongoing aggressive invasive medical therapies. But sadly, that is not the case,” he said. Medscape Medical News.
Traube says there are many reasons for this, but perhaps the most modifiable reason is lack of adequate access to high-quality end-of-life care. Furthermore, creating comprehensive quality measures for children’s end-of-life care is an incredible challenge.
“Death in children, in addition to being unusual, is very complicated, not only because of the family unit but also because of the variability of development,” explains Traube. “The care that should be given to a 2-year-old is very different than the care that should be given to a 15- or 16-year-old. However, they all fall into this type of pediatric basket.”
Traube says this commentary is helpful because it draws attention to this issue and “sets up some concrete anchor points, things that people who do end-of-life and palliative care for children need to be aware of.”
Funding for this research was provided by the National Cancer Institute, the St Baldrick Foundation, and the Conquer Cancer Foundation. Johnston, Prigerson and Traube have no relevant disclosures.
Cancer. Posted online August 25, 2022. summaries