An exploratory study on the barriers to pediatric palliative care programs and their relationships to funding

Abstract

Barriers to reimbursement for end-of-life care are systemic throughout the United States. The 2003 Institute of Medicine’s (lOM) report. When Children Die: Improving Palliative and End-of-Life Care for Children and Families, addressed the complexity of reimbursement issues and recommended further research. This study, a sequential mixed methods design, used quantitative techniques and a qualitative, phenomenological approach. The quantitative phase addressed the research question: Does the reimbursement of services for the delivery of pediatric palliative care differ between types of funding, and is funding related to directors’ perceptions of obstacles to the delivery of care? The qualitative phase addressed the research question: What are the barriers that CHI PACC directors’ experience in their roles and how do they overcome them? Phase I, a non-experimental, descriptive correlation study identified frequencies and proportions of programs that acknowledged reimbursement barriers and their relationships to funding sources, and their overall ratings of harriers to deliver pediatric palliative care. The convenience sample for this study was comprised of 37 respondents from an accessible population of 130 health professionals who were named specifically from a list and were in the role of administrators, directors, or coordinators of palliative care services in a health care facility in the United States. Data were obtained through a self-report instrument. Bivariate descriptive analysis was done using Version 10 of SPSS. A summary of the results included the top three items rated as the most severe barriers for staff to provide care and were (1) the staff being unaware of community funds that may be accessible for palliative care, (2) staff being unaware of foundation funds available within their organization that could be used for palliative care, and (3) the lack of standardized competencies for staff to provide pediatric palliative care. The top three items rated as the most severe perceived obstacles in providing care were (1) the association of hospice or palliative care with death, (2) physicians’ reluctance to make referrals for pediatric palliative care, and (3) the family’s reluctance to accept palliative care. Other key findings included that the majority of palliative care services reimbursed were for physical care services versus psycho-social services, that there was a significant relationship between some of the specific staff barriers and perceived obstacles, and that there was a significant negative relationship between reimbursement for private insurance with perceived obstacles (r = -.449, p<.05), but not for Medicaid or private donations. Phase II was an interpretive, phenomenological study conducted to better understand the barriers to the implementation of these programs as seen from the experiences of the directors of six federally funded demonstration programs located within the United States. Data were collected using in-depth, semi-structured interviews that were audio-taped, transcribed and interpreted using van Manen’s method of thematic analysis. The three themes that emerged were: “Leaders and Labyrinths,” “ Making Change of Dollars and Sense,” and “We Are Just Soldiers.” Participants described experiences that reflected challenges in finance, access, communication, and education. Each of the themes was directly linked with the quantitative findings and supported in the literature and indicate a need for further attention on pediatric palliative care in education, practice, research, and policy.