Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

Abstract

WHAT'S KNOWN ON THIS SUBJECT: Palliative care is an increasingly important element of pediatric care for children with noncurable, terminal conditions. Freestanding hospices represent one model of care provision; however, little research on this approach has been conducted. WHAT THIS STUDY ADDS:This report documents the experience of North America' s first freestanding hospice over 15 years to better understand the characteristics of children and families enrolled and to establish baseline information for future studies and program planning. abstract OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children' s Hospice (CPCH) is North America' s first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS:A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS:The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%).CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric lifethreatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served. Pediatrics 2014;134:e765-e772 Dr Siden conceptualized and designed the study, guided the analysis, and reviewed and revised the manuscript; Ms Chavoshi drafted the initial manuscript, carried out the analysis, and finalized the manuscript; Ms Harvey was responsible for data review and entry and database management; Ms Parker reentered data and reviewed data for accuracy; Ms Miller reviewed and revised the manuscript and provided content pertaining to program description and budget; and all authors approved the final manuscript as submitted.www.pediatrics.org/cgi

Shifting Focus in Pediatric Advance Care Planning: From Advance Directives to Family Engagement

“…To expand our understanding of PPC outcomes, we undertook a retrospective study of the Canuck Place Children's Hospice (CPCH) program over a 15-year period, reviewing the medical charts of the 672 children on the CPCH program from 1995 to 2010. 5 As a secondary analysis, we examined the role played by ongoing, routine ACP discussions in family decisions to forgo resuscitation attempts at the end of life in terminally ill children regardless of the presence of AD/DNAR orders. We found that many families requested Full Code intervention, but there were few actual resuscitation attempts.…”

“Let's Bring Her Home First.” Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care

“…13 A high frequency of non-oncological and neurological conditions has also been demonstrated by other groups. 10,13,15,18,19 Still, this group of patients is largely underrepresented in the literature on pediatric palliative care. 20 Families with children having diagnoses other than cancer report a lack of support in the medical system and benefit particularly from pediatric palliative care services.…”

“…This is in contrast to other populations described, although these publications cover a longer time range. 11,15,24 One reason for this disproportion may also be that, in recent years, robust structures of specialized outpatient centers and networks for patients with, for example, cystic fibrosis or Duchenne muscular dystrophy have evolved. 25,26 These centers provide outpatient care from childhood to often adulthood and have been instrumental, for example, for the routine implementation of noninvasive positive pressure ventilation in these patients.…”

Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands

“…The range of symptoms experienced in paediatric palliative care differ however in cancer and non-cancer patients [ 22 ]. Taken into account that the majority of children in palliative care in North America have non-cancer diagnoses [ 23 , 24 ] it should be stated that this study does not cover the full range of symptoms that may be encountered in paediatric palliative care.…”