Weaving Palliative Care Into the Tapestry of Pediatrics

Joetta D. Wallace, MSN, RN, NP-C, CHPPN; Rebekah Halpern, MPAS; Divya-Devi Joshi, MD; Theodore Zwerdling, MD

Disclosures

Journal of Hospice and Palliative Nursing. 2015;17(5):434-441. 

In This Article

Abstract and Introduction

Abstract

Since the 2003 Institute of Medicine report When Children Die proclaimed that early integration of palliative care would benefit children through the trajectory of an illness, disease, or condition, children's hospitals have strived to create pediatric palliative care programs. An innovative model will describe a highly successful pediatric palliative care program established initially with nursing staff at relatively lowcost. Recognizing thatmany of the principles of palliative care are inherent in established health care roles, the goal was to formally incorporate these concepts into direct caregivers' practice. It will be shown that this "role enhancement" can be very beneficial, especially for beginning programs. Through education and practice opportunities, palliative care principles can be infiltrated to the bedside with improved acceptance. Begun with philanthropic funds and completely operationally funded after 5 years, the number of patients and families soared, overutilization of invasive interventions plummeted, visits to the emergency department and hospital admissions decreased, and staff/family satisfaction rose. Palliative care woven into the skill set of health care professionals enhances care delivery across the continuum for children with life-threatening and/or complex chronic conditions with the goal to live optimally while combating the rigors of illness so they may recover, live better longer, or die gently.

Introduction

Palliative care (PC) in pediatrics differs from PC in adults owing to the need to consider the child's developmental level, spectrum of diagnoses, physiology and trajectory of disease process, family issues/dynamics, and the parent-child dyad. Initially, with the Institute of Medicine 2003 report When Children Die[1] and subsequently with their 2015 Dying in America: Improving Quality and Honoring Individual Preferences,[2] it is agreed that early integration of PC would benefit children through the entire trajectory of the disease process. This would include those who will be cured of their underlying condition, those expected to live with an incurable condition for a prolonged period of time, as well as those who are expected to die of their condition. Multiple models of PC delivery, ethical concerns, educational requirements, and modes of communication within care delivery teams have been evaluated for this population.[3–13]

The delivery of PC particularly in the pediatric hospital setting continues to be a challenge for multiple reasons. It is particularly difficult to consider death or stopping aggressive treatment in children.[14,15] In pediatrics, PC is being incorporated earlier in the continuum of the disease process, requiring broader acceptance by health care professionals.[16,17] Frequent admissions, discharges, and readmissions of children with complex, chronic conditions require collaboration with subspecialists and available community resources to assure continuity of care. These all contribute to making pediatric PC a very involved and complex process.[18]

The specialty of PC is relatively new, and the myth of it being "all about dying" has not yet been completely dismantled.[19–21] Although pediatric PC is gaining momentum over the last decade, the practice and acceptance continues to evolve.[4,22,23] These factors make implementation of a program as complex as PC especially difficult when funding and resources are limited.

Beginning in 2008, this institution had a vision of the child-family dyad being supported by the same team throughout their disease trajectory, from prenatal to intensive care to home. Not unlike other similar hospitals, this 383-bed children's and women's hospital with 8000 visits per year had financial constraints for nonreimbursed services, and there was initial reluctance to identify and financially support designated staff for a PC program. Also, at this time, there was a paucity of PC professionals with pediatric expertise.

Hospital leaders and staff in critical areas recognized the need for a process to facilitate communication between health care providers and families and between the various care team members to optimize symptom management and collectively empower the patient/family in decision making. While recognizing that PC is a specialty field like any other medical specialty, it was believed that many of these issues could be comprehensively addressed using PC principles and that minimal dedicated staff could initially enable infiltration of PC concepts into all dimensions of patient care. The goal was to lay the groundwork for a future intradisciplinary dedicated team of boarded or certified PC professionals.[10,24–26]

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