Beyond mortality: Assessing pediatric palliative needs


Beyond mortality: Assessing pediatric palliative needs


Murtha TD; Gielissen K; Marquez A; Prozora S; Massaro S


Journal of Palliative Medicine




human; child; female; male; diagnosis; controlled study; palliative therapy; pain; major clinical study; conference abstract; patient referral; neonatal intensive care unit; needs assessment; hematology; oncology; pediatric intensive care unit; resident; general practitioner; hospital patient; questionnaire; morbidity; mortality; bone marrow transplantation; heme; nausea; surgery; tertiary health care


Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often inaccurately based on mortality data, specifically the incidence of complex chronic conditions (CCC) at the time of death. These rates based on mortality vary among pediatric patients from 27-60% nationally, with 21% of US pediatric deaths being directly attributable to a CCC. Aim: This study seeks to understand the palliative care needs of an inpatient pediatric population, which we hypothesize will be substantial. Design: A cross-sectional survey was performed using a palliative care referral questionnaire, identifying the following characteristics among pediatric inpatients: 1) serious, life-limiting diagnosis, 2) frequent admissions and escalating care requirements, 3) persistent, poor symptom control, 4) need to clarify the goals of care, or 5) none of the above apply. Setting/Participants: Senior pediatric residents completed the palliative care needs assessment for pediatric patients upon admission to Yale New Haven Children's Hospital in the Fall of 2015. Patients admitted to the pediatric intensive care unit (PICU), hematology, oncology, and bone marrow transplant unit (Heme/Onc/BMT), and to the general medical units under a hospitalist, primary care physician, or subspecialty physician were included. Neonatal intensive care unit and exclusively surgical (non-PICU) patients were excluded. Results: 273 questionnaires were completed over 3 weeks. Nearly 45% of patients (n =122) met at least one palliative care referral criterion. Most patients were identified as having a serious illness (74%), with 70% meeting additional palliative care referral criteria (63/90). In fact, 21% of patients with a serious, life-limiting diagnosis met all four criteria (n = 19). On note, poor symptom control was reported in 55% of patients with positive surveys, comprising 25% of all patients surveyed (67/273), some of whom did not have a serious, life-limiting diagnosis. Data was further evaluated based on location of admission, with 75% of PICU patients (44/59), 56% of Heme/Onc/BMT admissions (25/45), and 31% of general/subspecialty patients meeting at least one palliative care referral criterion. Conclusions: This study identifies a considerable need for palliative care among pediatric inpatients at a tertiary care children's hospital. The results are consistent with national trends among dying patients, but the current study acts to supplement the existing literature by characterizing the need for palliative medicine based on morbidity among living patients. This approach allowed for recognition of the 25% of pediatric inpatients suffering from poor symptom control, such as pain or nausea, who could benefit from pediatric palliative care consultation. Furthermore, these data help to clarify where palliative care services are most urgently needed within the hospital, and can guide the distribution of resources.


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August 2018 List



Murtha TD; Gielissen K; Marquez A; Prozora S; Massaro S, “Beyond mortality: Assessing pediatric palliative needs,” Pediatric Palliative Care Library, accessed February 26, 2024,