Pediatric oncology providers perceptions of barriers and facilitators to early integration of pediatric palliative care

Abstract

Background Pediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for pediatric patients to identify barriers and facilitators that might assist in understanding how care could be improved. Procedures Pediatric oncology providers were recruited to participate in four focus groups. A proposal for early integration of a pediatric palliative care team (PPCT) was presented and followed by a facilitated discussion. Data were analytically categorized into themes by three independent coders using constant comparative analysis and crystallization techniques. A consensus approach was used to indentify final themes. Results Barriers to the proposed care model of early integration of a PPCT included provider role, conflicting philosophy, patient readiness and emotional influence and were more prevalent in the physician participants compared to nurse practitioner, nursing, and social work participants. Facilitators included patient eligibility, improved patient care, education, and evidence-based medicine. Though all participants were invested in providing optimal patient care, physician participants believed the current standard of care model is meeting the needs of patients and family, while the nurse practitioner, nursing, and social work participants working on the same healthcare team believed the proposed care model would improve the overall care of children diagnosed with cancer. Conclusions Differing perceptions among healthcare providers regarding the care of children with cancer suggest that team functioning could be improved. Avenues for pilot testing early integration of PC could provide useful information for a next study.

Early Integration of Palliative Care for Children with High‐Risk Cancer and Their Families

“…As a result of this misconception, PPC is often offered at the end of an illness trajectory when no further curative or life‐prolonging options exist . This phenomenon is particularly evident in the field of pediatric oncology, in which PPO may be viewed as “giving up.” To the contrary, we strongly advocate that PPO is not exclusive to the dying process; rather the goal is to honor the process of living in the face of childhood cancer . With this philosophy in mind, it stands to reason that PPO can and should begin at the time of diagnosis of high‐risk cancer and not be reserved exclusively for disease relapse, progression, or EOL.…”

Determinants of Hospital Death for Taiwanese Pediatric Cancer Decedents, 2001–2010

“…Furthermore, pediatric oncologists in Western countries often feel insufficiently trained, inexperienced, and uncomfortable in referring or providing EOL care. 38 Taiwanese pediatricians in this situation may suffer more than Western pediatric oncologists because pediatric palliative care is a relatively young field in Taiwan. In fact, very few children dying of cancer receive hospice care, especially hospice home care.…”

Feasibility of Early Palliative Care Consultation for Children With High-Risk Malignancies

“…Dalberg et al. led a series of in‐depth focus groups with pediatric oncology practitioners (physicians, nurse practitioners, nurses, and social workers) regarding opinions on early involvement of palliative care teams . The physicians in particular voiced reservations, saying that most palliative care needs are addressed by the oncology team, and that palliative care involvement is inconsistent with cure and might lead to parental anxiety.…”

“…Pediatric palliative care is a relatively new medical subspecialty in which the focus is on providing relief from physical, emotional, social, and spiritual suffering in children and their families. There is a common misunderstanding among health care practitioners and families that palliative care services are reserved for terminally ill children . But the reach of palliative care is far broader, embracing and supporting chronically ill children and their families through the ups and downs of a serious illness .…”