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Paper highlights initiatives and interventions
Initiatives have been sustained over time
About 12 years ago, Cynda Hylton Rushton, PhD, RN, FAAN, and others at Johns Hopkins set about to examine the issue of nurse self-care and the quality of care being delivered in pediatric palliative care. These individuals wanted to foster a culture of self-care, and as a consequence, developed four interventions for the pediatric unit. The description of those initiatives and the level of participation in the initiatives was captured in a published paper titled "Interdisciplinary Interventions to Improve Pediatric Palliative Care and Reduce Health Care Professional Suffering."1
The first step in the development of these initiatives was to conduct an assessment of the quality of care that was being delivered, at a baseline level.
"The impetus for the assessment was a question about, were we providing the kind of quality care that we aspired to in our institution," Rushton recalls. "And so we undertook a process of talking with clinicians and patient families to see where we were doing a good job and where we had opportunities for improvement."
Four initiatives developed
To improve the quality of care given to dying children and their families, the Johns Hopkins Children's Center (JHCC) had developed a pediatric palliative care program, the study notes.
However, the initial assessment found "significant distress among health care professionals," according to the paper. Rushton and her team set about developing programs toward the goal of alleviating this distress.
The assessment survey was developed "after a thorough review of the literature on family-centered care and ethical guidelines for the treatment of children near the end of life, addressed issues specific to pediatric decision-making, as well as a wide range of ethical and legal issues in end-of-life care," the article states.
"Although the needs assessment underscored the importance of caregiver suffering, its not a new concept," the authors write. "Suffering and loss are intrinsic and inevitable dimensions of caring for children with life-threatening conditions."
According to the article, "the team's underlying hypothesis is simple: Health care professionals will provide better care and support to seriously ill children and their families when they feel supported personally and professionally in their work."
The action plan developed by the JHCC included the following goals:
The first initiative in the quality improvement program was the establishment of the Compassionate Care Network (CCN), which "provides an open forum for interdisciplinary networking and education."
The goal of the CCN was to "to integrate palliative and end-of-life care information and expertise across all units in the Children's Center." Recruitment targeted "key clinicians and leaders in the JHCC," with attention focused on recruiting diverse disciplines. At the time the paper was published in 1996, there were 69 members of the CCN, including physicians (22%), nurses (49%), social workers (13%), child life specialists (8%), and other health care professionals (7%).
"In its first two years, the network sponsored three intensive training sessions and held six quarterly meetings," the article states.
The second intervention was the organization of Palliative Care Rounds (PCR), which were "monthly educational sessions [that] used the familiar model of attending rounds." To accomplish this, the health care providers identified a patient case "that exemplified the need for palliative care and/or end-of-life care."
"Often, a physician resident or fellow presented the medical facts of the case, the goals of care for the patient, and members of the interdisciplinary team shared psychosocial, emotional, and spiritual information about the patient and family."
The 79 participants reported the PCR program provided reinforcement of their mission, by stating such things as "learned feelings of other team members" and "shows need for pastoral care perspective," and "learned specific ways to help patient and family in terminal phase."
The third initiative was patient care conferences (PCC), interdisciplinary team meetings that were "designed to help identify and clarify goals and plans for care for individual patients."
The format for the PCC included "patient demographics, reason for the conference, summary of the child's illness, identification of patient/family/staff needs and issues, creating a palliative careplan, formulating a discharge plan, and follow-up."
"The Family Care Coordinator (FCC) played a vital role in case finding and in implementing the patient care conference intervention," the article states, and this "highly competent and respected nurse" had responsibility for "identification of family needs and actual or potential conflicts between families and the health care team."
The fourth initiative centered around bereavement debriefings, and the format was adapted from the "traditional critical incident stress debriefing model."
"Initially designed to address responses to unusual situations, the sessions were adapted to help health care professionals realize that the physical, emotional, social, and spiritual responses they experience after patient deaths were normal, natural responses to situations they regularly encounter."
Rushton says the initiatives developed and implemented by her team have been sustained over time, and the team was pleased with the results.
The "environment of interdisciplinary support" established by the initiatives allowed the health care professionals "a safe forum within which to experience interdisciplinary dialogue that witnessed and honored emotions, intellectual confusion, shared vulnerability, and grief," according to the article.