support, and facilitation of safe transitions between care settings (Morrison and Meier, 2004). Palliative care programs began to emerge in hospitals in the late 1980s and have evolved to include programs focused on intensive care, long-term care, community-based care, and pediatric care. Between 2000 and 2005, these programs increased by 96 percent in United States hospitals (AHA, 2007). The demand for these services will continue to rise with the aging of the baby boomer population and the evolution of health care innovations that extend life by preventing and treating both acute and chronic illnesses.
The National Consensus Project, chaired by Betty Ferrell, PhD, RN, FAAN, which represents four Coalition organizations (the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, and the National Hospice and Palliative Care Organization) has developed and disseminated the Clinical Practice Guidelines for Quality Palliative Care in 2004 and 2009.These guidelines serve as a national standard for informing providers, policy makers, and consumers about the attributes of high-quality palliative care (National Consensus Project for Quality Palliative Care, 2009).
Patients with palliative care needs often have multiple providers and use several different institutions. This scenario is especially true in pediatrics. To ensure continuity and avoid fractured care, it is essential that the care follow the patient and family. Palliative care provides aggressive symptom management, coordination of care, and psychosocial support with improved linkages to all sites of care (Remke, 2007). A designated “key worker,” supported by an interdisciplinary team, is essential to caring for these patients and families in a holistic way (Field and Behrman, 2003). Often this key worker is a nurse who can bring in other members of the team as needed. Nurses are experts in coordinating both the physical and psychosocial care; so they are ideal providers to serve as key workers to provide continuity of care across the continuum of care and through various settings.
An example of this model is the Pain and Palliative Care Program at Children’s Hospitals and Clinics of Minnesota that provides palliative care to inpatients, patients in their homes, and in a palliative care clinic. The nurse who is the key worker visits patients wherever they are, and assists with care coordination, medication reconciliation, and transition arrangements. These interventions take place in any location, including other inpatient facilities. These “continuity visits” encourage consistency and smooth transitions across sites of care.