Barriers of Healthcare Providers Against End-of-life Discussions with Pediatric Cancer Patients

Abstract

Objective: End-of-life discussions with patients can be one of the most difficult and stressful tasks for the oncologist. However, little is known about the discussions that healthcare providers have with patients in such situations and the difficulties they face. The primary end points of this study were to describe the contents of end-of-life discussion in the pediatric setting and the barriers to end-of-life discussion for pediatric patients, as perceived by pediatric healthcare providers. Methods: Participants were 10 healthcare providers. Semi-structured interviews were conducted, and the KJ method was performed to analyze the data. Results: We found 23 barriers against end-of-life discussion with pediatric cancer patients. These barriers were classified as follows: healthcare provider factors, patient factors, parent factors and institutional or cultural factors. In addition to barriers found in previous studies, some unique barriers were uncovered such as, 'Lack of confidence to face the patient after the discussion', 'Uncertain responsibility for treatment decision-making' and 'No compelling reason to discuss'. Healthcare providers actively discussed the purpose of treatment and the patients' wishes and concerns; however, they were reluctant to deal with the patients' own impending death and their estimated prognosis. Conclusions: End-of-life discussion with pediatric patients differs from that with adult patients.Further studies are required to analyze pediatric cases associated with end-of-life discussion and carefully discuss its adequacy, pros and cons.

Obstacles to the promotion of dialogue between parents, children and health professionals about death and dying in pediatric oncology

“…End-of-life discussions (EOLd) with patients have been reported as one of the most difficult and stressful tasks for an oncologist [12,13,14]. However, few studies have dealt with EOLd in the pediatric setting [12,15].…”

“…However, few studies have dealt with EOLd in the pediatric setting [12,15]. Physicians have been trained to maintain health and fight illness, but they are generally provided little guidance regarding communication with dying patients and their families [12,16].…”

“…The most significant difference is that parents play an important role in the communication with the pediatric patient [12,20,21]. However, parents are usually, though not always, gatekeepers or conduits for communication between health professionals and the sick child [12,22]. They decide what, when and how their child should be told about the illness [12,23].…”

“…However, parents are usually, though not always, gatekeepers or conduits for communication between health professionals and the sick child [12,22]. They decide what, when and how their child should be told about the illness [12,23]. When an end-of-life decision has to be made for a child, most parents, independent of their country of origin, seem to prefer a shared approach by their physicians over a paternalistic approach or an informed approach [24,25,26,27,28,29,30,31,32,33].…”

“…Some barriers to adequate EOLd were identified in previous studies irrespective of patient age or disease. Among them, healthcare provider factors (the lack of experience, discomfort with death and dying [12,38], lack of knowledge, uncertain prognosis [12,39], uncertain right time to address the issue [12,40] and reluctance to discussion [12,41] and patient and parent factors (the inability of patients to comprehend, lack of readiness, unrealistic expectations [12,40], family's opposition, [12,38] lack of familial acknowledgement of terminal condition [12,39], patient's willingness to protect other people and the inability to imagine a possible death [12,41]. So, Discussions of advance care planning frequently happen late in illness [37].…”