title: A framework for integrated pediatric palliative care: being with dying.
abstract: Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges their limited life expectancy and severity of illness. Two case studies of children illustrate different approaches-one that aggressively applies all possible technologies to maximize chances of survival and another that focuses on the patient's overall quality of life and on healing rather than curing. The cases highlight characteristics of an integrated model of palliative care to address clinical, moral, and ethical uncertainties. This model integrates being with doing, provides for developing attunement and presence as capacities for being with children and their parents, and addresses challenges in the healthcare environment. Strategies for integrating palliative care into pediatric practice include listening, fostering respect for the child and parents across the organization, nurturing collaborative connections, managing uncertainty, tolerating ambiguity, making peace with conflict, and committing to self-care. Every pediatric nurse can play a role in making the vision of palliative care a reality integrated into the fabric of pediatric practice.
authors.affiliation: The Johns Hopkins University and Children's Center, Baltimore, MD 21250, USA. crushton@son.jhmi.edu
authors.forename: Cynda Hylton
authors.initials: CH
authors.lastname: Rushton
mesh_terms: D019985:Benchmarking; D002648:Child; D003220:Conflict, Psychological; D003299:Cooperative Behavior; D003659:Decision Making, Organizational; D005260:Female; D006040:Goals; D006694:Holistic Health; D006801:Humans; D007400:Interprofessional Relations; D015470:Leukemia, Myeloid, Acute / Q000451:nursing / Q000523:psychology; D008297:Male; D016294:Models, Nursing; D024802:Nurse's Role / Q000523:psychology; D010166:Palliative Care / Q000458:organization & administration* / Q000523:psychology; D010290:Parents / Q000523:psychology; D010348:Patient Care Team / Q000458:organization & administration*; D010371:Pediatric Nursing / Q000458:organization & administration*; D010687:Philosophy, Nursing; D011788:Quality of Life; D012648:Self Care; D012647:Self-Assessment; D035501:Uncertainty