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Context Specialized pediatric palliative care (PPC) services have become more common in urban pediatric hospital settings, although little is known about palliative care specialist involvement. Objectives The objective of this study was to compare circumstances before death in children who spent their last days of life in an inpatient pediatric hospital setting, with or without PPC provider involvement during their inpatient stay. Methods Retrospective chart review of medical records of children for the last inpatient stay that resulted in death at a children's hospital setting between January 2012 through June 2013. The setting was a free-standing, 385-bed tertiary care children's hospital. Results Charts were reviewed for 114 children between 0 and 18 years of age, who were hospitalized for at least 24 hours before their death. Half of the children who died as inpatients were infants (median age five weeks). Children who received an inpatient PPC consult (25% of the sample) experienced 1) a higher rate of pain assessments, 2) better documentation around specific actions to manage pain, 3) greater odds of receiving integrative medicine services, 4) fewer diagnostic/monitoring procedures (e.g., blood gases, blood draws, placements of intravenous lines) in the last 48 hours of life, and 5) nearly eight times greater odds of having a do-not-resuscitate order in place at the time of death. Conclusion The integration of a PPC team was associated with fewer diagnostic/monitoring procedures and improved pain management documentation in this study of 114 children who died as inpatients.

In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert clinician–educators in HPM defined the initial competency-based outcomes for HPM fellows (General HPM Competencies). Concurrently, these experts recognized and acknowledged that additional expertise in pediatric HPM would ensure that the competencies for pediatric HPM were optimally represented. To fill this gap, a group of pediatric HPM experts used a product development method to define specific Pediatric HPM Competencies. This article describes the development process. With the ongoing evolution of HPM, these competencies will evolve. As part of the Next Accreditation System, the Accreditation Council of Graduate Medical Education uses milestones as a framework to better define competency-based, measurable outcomes for trainees. Currently, there are no milestones specific to HPM, although the field is designing curricular milestones with multispecialty involvement, including pediatrics. These competencies are the conceptual framework for the pediatric content in the HPM milestones. They are specific to the pediatric HPM subspecialist and should be integrated into the training of pediatric HPM subspecialists. They will serve a foundational role in HPM and should inform a wide range of emerging innovations, including the next evolution of HPM Competencies, development of HPM curricular milestones, and training of adult HPM and other pediatric subspecialists. They may also inform pediatric HPM outcome measures, as well as standards of practice and performance for pediatric HPM interdisciplinary teams.

Nearly 2000 children die due to a malignancy in the United States annually. Emerging data suggest that home is the desired location of care for children with cancer at end of life. However, one obstacle to enrollment in a pediatric palliative care (PPC) home care program may be fear that distressing symptoms at end of life cannot be adequately managed outside the hospital.To compare the symptom distress and quality-of-life experience for children who received concurrent end-of-life care from a PPC home care program (PPC/Oncology) with that of those who died without exposure to the PPC program (Oncology).We conducted a retrospective survey study of a cohort of bereaved parents of children who died of cancer between 2002 and 2008 at a U.S. tertiary pediatric institution.Sixty bereaved parents were surveyed (50% PPC/Oncology). Prevalence of constipation and high distress from fatigue were more common in the PPC/Oncology group; other distressing symptoms were similar between groups, showing room for improvement. Children who received PPC/Oncology were significantly more likely to have fun (70% versus 45%), to experience events that added meaning to life (89% versus 63%), and to die at home (93% versus 20%).This is the first North American study to assess outcomes among children with cancer who received concurrent oncology and palliative home care compared with those who received oncology care alone. Symptom distress experiences were similar in groups. However, children enrolled in a PPC home care program appear to have improved quality of life and are more likely to die at home.

The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings.To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes.Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support).Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P 0.001-0.031). Almost all siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals.How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes.

Pediatric palliative care (PPC) aims to promote quality of life for children and their families through prevention and relief of physical and psychosocial symptoms. Little is known about how PPC/hospice services impact health care resource utilization in an uncertain financial landscape.The study objective was to compare pediatric hospital health care resource utilization before and after enrollment in a home PPC/hospice program.The study was a retrospective administrative data analysis.The study took place in a pediatric multispecialty hospital. Data were analyzed for 425 children ages 1-21 years who received home-based PPC/hospice services between 2000 and 2010.Hospitalization and emergency room (ER) administrative data were examined to determine whether or not there were changes in total number of hospital admissions, length of stay (LOS), and hospital billed charges before compared to after PPC/hospice exposure.There was no change in average total number of admissions pre-/post-PPC/hospice exposure; however, we found a significant increase in hospital/ER admissions for children with cancer diagnoses with longer exposure to PPC/hospice services. There were statistically significant reductions in LOS and total charges for hospital-based care; reductions were more pronounced in the noncancer group. Noncancer patients with at least six months of PPC exposure showed a significant decrease in total LOS from pre- to post-program admission by an average of 38 days, and an average decrease in total hospital charges of nearly $275,000.Enrollment in home-based PPC/hospice was associated with lower hospital and ER LOS and total hospital charges as compared with the period prior to enrollment for children with noncancer diagnoses.

OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.