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

Abstract

Background Decisions about end-of-life care may be influenced by cultural and disease-specific features. We evaluated associations of demographic variables (race, ethnicity, language, religion, and diagnosis) with end-of-life characteristics (Phase I enrollment, do-not-resuscitate (DNR) orders, hospice utilization, location of death), and trends in palliative care services delivered to pediatric hematology, oncology, and stem cell transplant (SCT) patients. Procedure In this single-center retrospective cohort study, inclusion criteria were as follows: patients aged 0–35 who died between January 1, 2002 and March 1, 2014, and had been cared for in the pediatric hematology, oncology, and SCT divisions. The era of 2002–2014 was divided into quartiles to assess trends over time. Results Of the 445 included patients, 64% of patients had relapsed disease, 45% were enrolled in hospice, and 16% had received palliative care consultation. Patients with brain or solid tumors enrolled in hospice (P < 0.0001) and died at home more frequently than patients with leukemia/lymphoma (P < 0.0001). Patients who received Phase I therapy or identified as Christian/Catholic religion enrolled in hospice more frequently (P < 0.0001 and P = 0.03, respectively). When patient deaths were analyzed over quartiles, the frequency of DNR orders (P = 0.02) and palliative care consultation (P = 0.04) increased over time. Hospice enrollment, location of death, and Phase I trial enrollment did not change significantly. Conclusions Despite increases in palliative care consultation and DNR orders over time, utilization remains suboptimal. No increase in hospice enrollment or shift in death location was observed. These data will help target future initiatives to achieve earlier discussions of goals of care and improved palliative care for all patients.

Variations Among Physicians in Hospice Referrals of Patients With Advanced Cancer

“…Teno, personal communication, August 2015). [41][42][43][44][45] This disparity is likely a result of several factors, but may be explained in part by the use of palliative chemotherapy and blood transfusions late in the disease course, a practice that is shown to be effective 46 and desired, 47 but also cost prohibitive for hospice facilities. 48 Further work is required to identify cost-effective solutions to provide quality end-of-life care to these patients.…”

Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents

“…7 However, findings from studies of end-of-life care preferences, such as hospice, are mixed. While some suggest that hospice is rarely used, 7 others have described no differences 51 or higher hospice enrollment among Latino compared with non-Latino children with cancer. 52 Explanations for these discrepancies include community- and individual-level differences in perceptions of hospice services, language, and other sociodemographic variables, such as financial hardship, geographic separation, and intensity of medical needs.…”

Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life

“…(20, 21) Additionally, pediatric oncology patients who underwent HCT had a shorter time interval between completion of a do not resuscitate (DNR) order and death, were enrolled less often in hospice, and were less likely to die at home as compared to pediatric oncology patients who did not undergo HCT as a part of their treatment. (22)…”

“…Additionally, we explored differences in EOL features of AYA HCT patients based on their cause of death, regardless of location of death. This descriptive study builds upon very limited literature characterizing the demographic and EOL characteristics of AYA patients who have undergone allogeneic HCT,(20, 22) and to our knowledge it is the first study to assess the physical and psychological symptoms of this uniquely vulnerable patient population during the last month of life.…”