Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children

Most pediatric clinicians aspire to promote the physical, emotional, and developmental well-being of children, hoping to bestow a long and healthy life. Yet, some infants, children, and adolescents confront life-threatening illnesses and life-shortening conditions. Over the past 70 years, the clinician's response to the suffering of these children has evolved from veritable neglect to the development of pediatric palliative care as a subspecialty devoted to their care. In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. We conclude by highlighting challenges remaining for the next generation of pediatric palliative care professionals to address

Parents' Perspectives on the School Experiences of Children with Cancer

Interviews with 59 parents of school age children with cancer indicate problems children encountered in returning to school: missing significant amounts of school due to illness and treatments, teasing by classmates and peers, and strained relations with teachers. Most parents report that despite missing much school their child was caught up with schoolwork, suggesting that academic difficulties are not paramount. Most parents also report receiving substantial help from sympathetic and competent educators. However, parents also indicate that some teachers were insensitive to their child's condition, while others were overprotective, suggesting the need for a delicate balance in defining appropriate teacher behavior. A responsive yet normalizing school environment can be facilitated by vigorous and proactive partnerships among the medical staff, family, and school system.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/68682/2/10.1177_027112148600500405.pd

Cost Analysis and Policy Implications of a Pediatric Palliative Care Program

ContextIn 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the child's life expectancy.ObjectivesWe assessed the change from before PFC enrollment to the enrolled period in 1) health care costs per enrollee per month (PEPM), 2) costs by service type and diagnosis category, and 3) health care utilization (days of inpatient care and length of hospital stay).MethodsA pre-post analysis compared enrollees' health care costs and utilization up to 24 months before enrollment with their costs during participation in the pilot, from January 2010 through December 2012. Analyses were conducted using paid Medicaid claims and program enrollment data.ResultsThe average PEPM health care costs of program enrollees decreased by $3331 from before their participation in PFC to the enrolled period, driven by a reduction in inpatient costs of$4897 PEPM. PFC enrollees experienced a nearly 50% reduction in the average number of inpatient days per month, from 4.2 to 2.3. Average length of stay per hospitalization dropped from an average of 16.7 days before enrollment to 6.5 days while in the program.ConclusionThrough the provision of home-based therapeutic services, 24/7 access to medical advice, and enhanced, personally tailored care coordination, PFC demonstrated an effective way to reduce costs for children with life-limiting conditions by moving from costly inpatient care to more coordinated and less expensive outpatient care. PFC's home-based care strategy is a cost-effective model for pediatric palliative care elsewhere

Children’s Experience of Symptoms: Narratives through Words and Images

Children who live with a complex chronic or life-threatening illness face extraordinary challenges. Whether they are receiving disease-oriented treatment (aimed at potential cure or prolongation of life) or palliative treatment—or both concurrently—our challenge is to enhance their comfort and minimize their distress. Symptom management is thus a critical component of pediatric palliative care. Symptoms may be either physical or psychological in nature (or a confluence of both) and their effective management has a direct impact on the child’s quality of life. This article provides an integrative overview of children’s experience of selected physical and psychological symptoms, as expressed through their words and images. Understanding their perspectives is an essential component in the design and provision of optimal symptom management. Included, as well, are examples from siblings—a reminder of the profound impact of illness on these children who also “live” the experience, albeit in a different way. The symptoms that are described are pain, nausea and vomiting, fatigue, weakness, seizures, hair loss, depression, and anxiety. Although psychological symptoms are often inextricable from the physical, they may also present independently as part of the overall illness experience