Palliative Care Consultation in Pediatric Stem Cell Transplant

Abstract

Purpose: The purpose of this project was to investigate the feasibility of a proposed practice change to integrate early palliative care consultation that would promote transcendent comfort in children and adolescents with advanced or high-risk cancers or other non-malignant diseases undergoing hematopoietic stem cell transplantation (HSCT). Background and Significance: Hematopoietic stem cell transplantation (HSCT), a modality used to treat a variety of advanced cancers and other serious non-malignant diseases in children and adolescents, may have significant symptom distress. The goal of enhanced comfort is the utmost concern of children and adolescents undergoing HSCT and their families (Mayer, Tighouart, Terrin, Stewart, Peterson, Jeruss, & Parsons, 2009). Multiple pediatric professional organizations have set a standard to promote relief of symptom distress and promote quality of life and enhanced comfort (AAP, 2000; Freibert & Huff, 2009). Clinical research on the effectiveness and benefits of interventions to relieve symptom distress is paramount to expanding the evidence base of pediatric palliative care and the science of HSCT in prioritizing comfort. Methods: A single-site, feasibility study was used to examine the primary aims of (1) willingness of patients and families of a vulnerable population to receive the palliative care intervention, (2) willingness of the health care team to refer families, (3) resource allocation, and (4) family and provider satisfaction. Secondary aims included evaluation and concordance of comfort from parent and child perspectives. A convenience sample of 12 families (child undergoing HSCT and their parent) were enrolled on the study. Data collection included referral and enrollment patterns, and time and resources required for palliative care interventions. Additional data included child self-report and parental reports of their child's comfort at baseline, T1 (~14 days following HSCT), and T2 (~ 30 days following HSCT). Family and provider satisfaction were measured at the end of enrollment. Findings: 100% of eligible families were referred and consented to participate (N = 12). Each family received a minimum of one visit per week, however, an average of 3 visits per week were made. Visits ranged from 15 minutes to 2 hours, depending upon individual circumstances. The top interventions requested or required, in addition to standard HSCT care interventions, included supportive care counseling, massage therapy, aromatherapy, play therapy, acupuncture, acupressure, and other integrative medicine techniques. Children and adolescents consistently rated comfort as "very good", however, parents tended to rate their child's level of comfort lower. There were 3 deaths of participants during the study. Families and providers expressed high satisfaction with this approach to care. Conclusion: This intervention is a novel approach to providing early palliative care services with curative intent therapy. Early palliative care intervention was well received by providers and families of children undergoing HSCT. Parents rate their child's level of comfort somewhat lower than child self-report, however, distress of parents impacts the entire family system thus interventions aimed at improving the child's comfort may improve parental distress and support better family functioning. Early palliative care services helped palliative care practitioners better meet the needs of the families who experienced the death of their child. Because of this additional support, end of life was peaceful and coordinated. This approach to care will be integrated as a standard of care for HSCT at the study site.