Hospice Care for Children With Cancer

Abstract

Hospice is an important provider of end of life care; many children who die of cancer enroll in hospice programs. How frequently such children remain in hospice to die at home, or disenroll from hospice and die in the hospital, has not been described. A child's location of death has important implications for quality of life and parental adaptation. This represents a subanalysis of a retrospective study of 202 consecutive oncology patients who died at a single center between January 1, 2006 and December 31, 2010. Of 95 children who enrolled in hospice, 82 had known location of death. Sixty (73%) died at home or an inpatient hospice unit, 15 (18%) died in the oncology unit, 5 (6%) died in the intensive care unit, and 2 (2%) died in the emergency department. The median length of hospice services was 41 days, twice the national median of 21 days reported in adults. One quarter of children disenrolled from hospice care, ultimately dying in an acute care setting. Further studies are warranted to explore the hospice experience in children, and to address modifiable factors that may impact a family's choice to withdraw from hospice care.

Trends in End-of-Life Care in Pediatric Hematology, Oncology, and Stem Cell Transplant Patients

“…Similar to prior studies, we observed that patients who died with brain and solid tumors more often enrolled in hospice and died at home compared to those with leukemia. As supportive care has improved, patients with hematologic malignancies in this series were not more likely to die from early, unanticipated toxicities, which could impact the opportunity for palliative care.…”

“…When providers focus on the palliative care needs of children with cancer, families report better preparedness for the end of life, improved quality of life, and decreased suffering . Previous research explored the relationship of gender, race, ethnicity, religion and diagnosis with palliative care services and aggressiveness of care at the end of life for adult and pediatric cancer patients . Research has shown that parents and clinicians prefer that a patient's end‐of‐life care and death occur at home .…”

“…[9][10][11] Previous research explored the relationship of gender, race, ethnicity, religion and diagnosis with palliative care services and aggressiveness of care at the end of life for adult and pediatric cancer patients. [12][13][14][15][16][17][18][19][20][21] Research has shown that parents and clinicians prefer that a patient's end-of-life care and death occur at home. [9,11,22,23] This was more likely to occur when a palliative care team was involved; [11] however, cultural and religious preferences may influence these decisions.…”

End-of-Life Care for Hispanic Children

“…There is a need to ensure culturally competent, high-quality end-of-life care for diverse children (O’Mara & Zborovskaya, 2016; Periyakoil, Neri, & Kraemer, 2015; Thienprayoon et al, 2015) Improving our knowledge of the characteristics of children and their families that influence end-of-life care utilization will assist nurses, other clinicians, and policy makers to address the specific needs of Hispanic children, while ensuring children and their families receive quality end-of-life care. Therefore, the purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children.…”

Importance of palliative care in pediatric oncology

“…Childhood cancer is rare, however, for the past year, has constituted the leading cause of death among children [1]. Cancer and its treatment bring repercussions for the child life and their family, causing a variety of symptoms and difficulties, and impose changes in habits, restrictions, isolation, removal of routine activities such as playing, lack of contact with friends, recurrent hospitalizations, even after the acute phase of treatment, which cause intense pain [2].…”