Background/Significance: Quality palliative/EOL care is a dynamic process moderated by individual values, knowledge and preferences for care. Low perceived competence/discomfort can adversely affect palliative/EOL care provided to the dying. These skills are rarely natural and must be first assessed, then learned. The need to address complex illness care requires that clinical staff recognize the limits of their professional expertise and the need for collaboration across disciplines.
Methods: This descriptive study electronically surveyed participants using the End-of-Life Questionnaire (EOLQ) (Montagnini, Smith & Balistrieri, 2012). The EOLQ consists of 28 specific questions on knowledge, skills and attitudes with subscale items related to seven domains of palliative/EOL care. There were 4 open-ended questions to ascertain issues deemed important by participants, and ten demographic items. Interdisciplinary professionals from 25 pediatric and adult hospital units participated in the study. Quantitative data analysis was descriptive and correlational in nature. Qualitative data analysis identified themes with sub-themes of participant concerns.
Results: Participants in the study (N=1200) included physicians, nurses, respiratory therapists, physical and occupational therapists, social workers, pharmacists, chaplains, and child-life health care professionals. Twenty-five nursing units participated averaging a 27% response rate. Quantitative data analysis revealed that overall perceived competency in palliative/EOL care for all respondents was moderately high (x̅ = 3.68; r= 1-5). Subscale analysis revealed that self-perceived EOL competency behaviors were significantly lower compared to knowledge and attitude competencies (p<.0001). Perceived EOL Care competencies were significantly influenced by educational preparation (p<0.0001), years in current practice (p<0.0001), acuity level of unit population (p<0.0001), role on treatment team (p<0.0001) and physician specialty (p<0.0002). Significant differences in individual and team behaviors were found for physicians, nurses, respiratory therapists, and social workers (p<.05). When team behaviors were compared according to nursing unit acuity level significant differences were found in attitude, knowledge and symptom management between adult ICU and adult acute care nurses (p<.00001). Qualitative analysis (N=475) identified 7 major themes with sub-themes: 1. Communication (59.6%) with sub-themes related to communication between patient/family and physician, between services and disciplines, between shifts and sooner palliative care team consultation; 2. Decision-making (50.1%) with sub-themes related to concerns regarding code status, transition/withdrawal of care and managing conflicts; 3. Educational needs of patients and providers (38.5%) with sub-themes related to patient/family education about the dying process, code status and definitions of comfort vs palliative care, as well as provider education regarding how to have realistic prognosis/EOL discussions, code status and EOL medications treatment; 4. End-of-life Care needs (31.8%) with sub-themes related to symptom management, family support and providing a peaceful environment, 4. Ethical concerns (17.1%) with sub-themes about futility of care, honoring wishes and managing family disagreements, 6. Satisfaction of PC and EOL Care (39%) with sub-themes recognizing patient/family and provider satisfaction with care given, and 7. Spiritual and Cultural Care (19%) with sub-themes addressing staff understanding and sensitivity to family preferences.
Conclusions: This study provided baseline measurements and direction to new research initiatives in the provision of palliative/EOL care. The results indicated that educational needs related to the provision of competent palliative/EOL care may be different depending on the hospital unit acuity level, patient population, experience level of staff, and professional role. Interventions should be focused on improving communication, collaboration and decision-making behaviors between the disciplines and with the patients and family members, with earlier palliative care consultation and involvement when needed. The longer-term aims beyond this study are to 1) to educate all staff caring for patients with advanced illness about palliative and end-of-life care issues; 2) to improve end-of-life care planning for hospitalized patients including increased communication and collaboration with the community and clinic settings; 3) to develop health care providers abilities for initiating an earlier and more collaborative approach with the Palliative Care team regarding end-of-life issues in the acute setting; and 4) to provide direction to new research initiatives in the care of patients and their families who are facing life-limiting illness situations.