ticing physicians can fill this gap (Hilden et al., 2001; Khaneya and Milrod, 1998; Sahler et al., 2000). In current medical care structures, providers are tied to particular sites and services (i.e., cardiology or intensive care unit). A family will see different chaplains, social workers, and providers at different sites and on different shifts, and often loses contact with these individuals upon discharge. Even when palliative care or pain teams are involved, their communication over time and sites is discontinuous. Furthermore, in rural regions the wide geographic distribution of dying children makes it untenable for them to be aided by palliative care programs based in metropolitan centers.

Unfortunately, fragmentation also occurs where established palliative care services are available. Although it has not been studied formally, one reason seems to be undefined channels of communication between the family and care providers. In most instances, direct care problems (e.g., development of new symptoms) should be addressed to a home care team. However, families may communicate these problems to personnel more familiar to them at the treatment center. In these situations, fragmentation can result from a failure of one health care team to give prompt notification of the clinical problem to the other. Although less common nowadays, the inability to provide certain interventions in the home setting (e.g., local blood bank policies proscribing transfusions outside a licensed hospital) also can result in fragmentation of care and the need to travel from home to the medical facility. Poor working relationships or communication channels between in-home care providers and the hospital may result in difficulty gaining readmission for management of difficult symptoms during the final stage.

There are some models in place or in the planning stages to remedy these problems. At Boston Children’s Hospital the Pediatric Advanced Care Team (PACT) coordinates the essential elements of end-of-life care across the continuum of inpatient, outpatient, and home care settings for children with limited life expectancy. The goals of PACT are to improve family and caregiver communication, lessen pain and suffering, and emphasize meaningfulness during the end-of-life period. Interventions have focused on four main areas: (1) patient care, (2) education, (3) bereavement, and (4) outreach. As of 2000, the program had consulted on 80 patients, and the experience so far suggests that caregivers and families value the service. In a survey of providers following each consult, all physicians and nurses and 93 percent of psychosocial clinicians found the consults helpful (Wolfe, 2000).

The Pediatric Palliative Care Project at Children’s Hospital and Regional Medical Center in Seattle, Washington, is another model, begun in 1998 and funded by the Robert Wood Johnson Foundation (http://www.seattlechildrens.org/pedpalcare/). It is evaluating the use of symptom control algorithms, a decisionmaking and charting tool, and a case man-

The National Academies of Sciences, Engineering, and Medicine
500 Fifth St. N.W. | Washington, D.C. 20001

Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement