Easing of Suffering in Children With Cancer at the End of Life: Is Care Changing?
- 1 April 2008
- journal article
- pediatric oncology
- Published by American Society of Clinical Oncology (ASCO) in Journal of Clinical Oncology
- Vol. 26 (10), 1717-1723
- https://doi.org/10.1200/jco.2007.14.0277
Abstract
In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life. Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort). In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002). Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.Keywords
This publication has 44 references indexed in Scilit:
- Care-Related Distress: A Nationwide Study of Parents Who Lost Their Child to CancerJournal of Clinical Oncology, 2005
- Cancer-Related Deaths in Children and AdolescentsJournal of Palliative Medicine, 2005
- Initial Hypoglycemia and Neonatal Brain Injury in Term Infants With Severe Fetal AcidemiaPediatrics, 2004
- The symptoms of dying childrenJournal of Pain and Symptom Management, 2003
- Poland: The Status of Pediatric Palliative CareJournal of Pain and Symptom Management, 2002
- End of Life in HIV-infected Children Who Died in HospitalDeveloping World Bioethics, 2002
- How Children Die in HospitalJournal of Pain and Symptom Management, 2000
- Understanding of Prognosis Among Parents of Children Who Died of CancerPublished by American Medical Association (AMA) ,2000
- Symptoms and Suffering at the End of Life in Children with CancerNew England Journal of Medicine, 2000
- A Controlled Trial to Improve Care for Seriously III Hospitalized PatientsJAMA, 1995