Title

Illness and end-of-life experiences of children with cancer who receive palliative care

Authors

Erica C. Kaye, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee.
Courtney A. Gushue, Department of Pediatrics, Le Bonheur Children's Hospital, Memphis, Tennessee.
Samantha DeMarsh, Ohio University Heritage College of Osteopathic Medicine, Cleveland, Ohio.
Jonathan Jerkins, Department of Pediatrics, Le Bonheur Children's Hospital, Memphis, Tennessee.
April Sykes, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee.
Zhaohua Lu, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee.
Jennifer M. Snaman, Department of Psychosocial Oncology and Palliative Care, Division of Pediatric Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.
Lindsay Blazin, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee.
Liza-Marie Johnson, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee.
Deena R. Levine, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee.
R Ray Morrison, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee.
Justin N. Baker, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee.

Abstract

BACKGROUND: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). METHODS: A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool. RESULTS: The majority of pediatric palliative oncology patients received experimental therapy (79.4%), with 40.5% enrolled on a phase I trial. Approximately one-third received cancer-directed therapy during the last month of life (35.5%). More than half had at least one intensive care unit hospitalization (51.4%), with this subset demonstrating considerable exposure to mechanical ventilation (44.8%), invasive procedures (20%), and cardiopulmonary resuscitation (12.1%). Of the 122 patients who died in the hospital, 44.3% died in the intensive care unit. Patients with late PC involvement occurring less than 30 days before death had higher odds of dying in the intensive care unit over the home/hospice setting compared to those with earlier PC involvement (OR: 4.7, 95% CI: 2.47-8.97, P < 0.0001). CONCLUSIONS: Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.

Publication Title

Pediatric blood & cancer

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