Edward L. Schor

A Framework of Pediatric Hospital Discharge Care Informed by Legislation, Research, and Practice

To our knowledge, no widely used pediatric standards for hospital discharge care exist, despite nearly 10 000 pediatric discharges per day in the United States. This lack of standards undermines the quality of pediatric hospital discharge, hinders quality-improvement efforts, and adversely affects the health and well-being of children and their families after they leave the hospital. In this article, we first review guidance regarding the discharge process for adult patients, including federal law within the Social Security Act that outlines standards for hospital discharge; a variety of toolkits that aim to improve discharge care; and the research evidence that supports the discharge process. We then outline a framework within which to organize the diverse activities that constitute discharge care to be executed throughout the hospitalization of a child from admission to the actual discharge. In the framework, we describe processes to (1) initiate pediatric discharge care, (2) develop discharge care plans, (3) monitor discharge progress, and (4) finalize discharge. We contextualize these processes with a clinical case of a child undergoing hospital discharge. Use of this narrative review will help pediatric health care professionals (eg, nurses, social workers, and physicians) move forward to better understand what works and what does not during hospital discharge for children, while steadily improving their quality of care and health outcomes.

Transition: changing old habits.

Transitioning patients from pediatric to adult care is an issue of increasing concern, especially when it involves children with chronic conditions that are congenital or complex.1 Care of these children often requires the special expertise of pediatric subspecialists in addition to ongoing primary care. Pediatric specialists and generalists anticipate that patients will age out of their care, yet many adult medicine practitioners do not feel comfortable assuming responsibility for young adults chronically ill with pediatric disorders. A growing array of strategies and interventions are being designed to facilitate this transition, yet they all may not be necessary. The conclusion that a transition to adult care is indicated is generally based on traditional age cutoffs rather than science. Although it would be a significant change, pediatric subspecialists could reframe their services as condition-specific rather than age-specific care and continue to provide care to their aging patients over the life course in conjunction with adult primary care physicians. There is no consensus on the appropriate upper age of pediatricians’ patients or when youths become adults. Adulthood is more a social construct than a developmental stage. It has no readily identifiable markers such as those that define puberty, the beginning of adolescence. As a socially defined stage of life, there exists great variability about who is considered legally an adult. Even the assumption of “adult” responsibilities, that is, responsibility for meeting one’s own basic needs, does not consistently signify adulthood, although perhaps success at that endeavor would count as being an adult. Imaging studies of the brain demonstrate that adult brain size, especially that of the frontal cortex, is attained between the … Address correspondence to Edward L. Schor, MD, The Lucile Packard Foundation for Children’s Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301. E-mail: edward.schor{at}lpfch.org

Supporting Self-Management of Chronic Health Problems

Adoption of a comprehensive model for self-management support (SMS) in pediatric care has the potential to improve health outcomes and to reduce utilization, costs, and caregiver burden. Self-management is “the daily activities that individuals undertake to keep illness under control, minimize its impact on physical health status and functioning, and cope with the psychosocial sequelae of the illness.”1 It also includes the health behaviors that prevent disease and promote health. Children with chronic or complex physical, developmental, behavioral, or emotional conditions are a unique population for whom self-management activities are valuable, although sometimes burdensome, everyday responsibilities (Table 1).2 Implicit in the assumption of these responsibilities is the understanding that families and children, to the extent they are willing and able, are active participants in care provision. View this table: TABLE 1 Self-Management Skills and Activities The increasing prevalence and duration of chronic illness have produced a growing burden of self-management for children and families and a greater need for an array of supports for them. These are termed “self-management supports” (Table 2) and encompass “the systematic provision of education, supportive interventions, encouragement and assistance to enhance families’ skills and confidence in health promotion and the management of their children’s health problems”.3 Child health care professionals are well positioned to provide these supports. View this table: TABLE 2 SMSs for Families Although SMS has been a component of adult chronic care for decades, research suggests that it remains underdeveloped and underutilized in pediatric care. There are few data on the extent of SMSs currently provided as part of chronic care or in the context of well-child care. Bright Futures mentions self-management in the chapter on adolescent visits.4 Many … Address correspondence to Holly K.M. Henry, PhD, Lucile Packard Foundation for Children’s Health, 400 Hamilton Ave, Suite 340, Palo Alto, CA 94301. E-mail: holly.henry{at}lpfch.org

Reshaping pediatric practice.

When pediatrician Donald Berwick became Administrator of the Centers for Medicare and Medicaid Services, he brought with him a simple framework to reorganize that agency and through it the US health care system.1 The “Triple Aim” sets 3 goals: (1) reducing per capita costs of health care, (2) improving the experience of care by addressing quality and satisfaction, and (3) improving the health of populations. Combined, these aims redefined the role of the Centers for Medicare and Medicaid Services from financier of health care services to public fiduciary and change agent. They also are likely to reshape the role and organization of pediatrics in the United States. Despite its reputation as a low-cost service, child health care will be examined for overuse and inefficiencies. Preventive care will be scrutinized. Interventions will target the small group of children who account for the majority of health care expenditures,2 and there will be greater interest in modifiable social factors that ramp up the costs of care for many children. And despite their low incomes relative to other specialists, pediatricians in the United States will not be immune from payment reform and possibly reduced reimbursement. Pediatricians will experience increasing pressure to reduce variations in the quality of care among neonates and children with chronic and complex health problems who are at heightened risk for poor outcomes.3 Recent shifts in the prevalence of a number of pediatric morbidities are placing new demands on child health care providers for which they may be … Address correspondence to Edward Schor, MD, Lucile Packard Foundation for Childrens Health, 400 Hamilton Ave, Suite 340, Palo Alto, CA 94301. E-mail: edward.schor{at}lpfch.org

Apples and Oranges: Serious Chronic Illness in Adults and Children

Healthcare in the US is designed primarily for adults, and this paradigm creates some obstacles for child healthcare providers, especially those caring for children with chronic health problems. Chronically ill adults and children share a number of similar service needs, and adult chronic care models are valuable guides to developing children’s health services. However, important differences exist, and strategies to address those of special importance to children need to be built into the healthcare system. Nowhere are these differences more pronounced than in the case of serious chronic illness. Serious chronic diseases among adults are relatively common, and a few highly prevalent conditions, such as cardiovascular diseases, cancer, diabetes, and chronic respiratory diseases, comprise the majority of disorders. Notably, these conditions have an insidious onset and course, and are consequences of a lifetime of health risk behaviors or exposures to adverse social factors, as well as a natural sequel of aging. They are rarely caused by a single etiologic agent. The course of many of these disorders typically is one of slow but relentless decline of functioning leading to death. The most prevalent pediatric chronic conditions (eg, asthma, obesity, and some behavioral disorders) are similar in course regardless of their age of onset, but the myriad other “serious ongoing physical health conditions” for which pediatric subspecialty care is necessary are not. Most of these conditions are chronic in their course, but their etiology does not reflect the accumulation of insults common to many adult chronic conditions. The majority have their onset very early in life and are congenital, genetic, or result from physiological insults often limited to the time of birth. Although their etiology may be singular, their impairment may involve a constellation of body systems, often in unique and rare ways. Serious pediatric chronic illnesses are, therefore, not as frequently progressive as adult chronic conditions, and their occurrence is less often preventable.

Authors' response: re: Differing opinions on upper age limit for pediatrics

Drs White and Cooley are leaders in the field of care transition whose work I highly respect. They are correct that the solution to providing care to older adolescents and young adults with chronic health problems who have required pediatric subspecialty care is multifaceted. My suggestion that pediatric subspecialists continue to care for their patients … E-mail: edward.schor{at}lpfch.org