ABSTRACT
OBJECTIVES: The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients' unmet needs and quality of life (QoL)-related concerns. METHODS: Participants from all 4 groups were approached within 2 months after the patient's admission to the home hospice care unit. Participants completed Edmonton Symptom Assessment Scale (ESAS) and Measure Yourself Concerns and Wellbeing (MYCAW) questionnaires, for patient's QoL-related concerns. Qualitative analysis of short narratives was conducted using ATLAS.ti software for systematic coding. RESULTS: In total, 78 participants completed the study questionnaires: 24 patients, 22 informal caregivers, 22 palliative HCPs, and 11 family physicians. Informal caregivers gave higher scores (i.e., greater severity) than patients for fatigue on ESAS (p = 0.009); and family physicians lower scores than patients for ESAS drowsiness (p = 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%, p = 0.02); lower scores for gastrointestinal concerns (p = 0.048); and higher scores for overall function (p = 0.049). Qualitative assessment identified a gap between how patients/informal caregivers vs. palliative HCPs/family physicians regard emotional-spiritual themes, including discussing issues related to death and dying. SIGNIFICANCE OF RESULTS: The findings of the present study suggest that exploring a multifaceted cohort of home hospice patients, informal caregivers, palliative HCPs, and family physicians may provide insight on how to reduce communication gaps and address unmet needs of patients, particularly regarding emotional and spiritual concerns. CONCLUSIONS: While the 4 groups were similar in their scoring of patient QoL-related concerns, there were discrepancies for some concerns (e.g., patient fatigue) and expectations regarding the need to discuss emotional and spiritual concerns, including on death and dying. Educational initiatives with programs providing training to all 4 groups may help bridge this gap, creating a more open and collaborative hospice care environment.
ABSTRACT
In this paper, we describe the case study of a 27 year-old Arab female patient receiving palliative care for advanced breast cancer who was referred to complementary medicine (CM) consultation provided within a conventional oncology department. We explore the impact of the integrative CM practitioners' team of three family physicians and one Chinese medicine practitioner on the patient's well-being and specifically on the alleviation of her debilitating hot flashes and insomnia. This quality of life improvement is also affirmed by comparing the Edmonton Symptom Assessment Scale (ESAS) and Measure Yourself Concerns and Well-being (MYCAW) questionnaires administered at the initial and follow-up assessment sessions. In conclusion, we suggest that family physicians trained in evidence-based complementary medicine are optimal integrators of holistic patient-centered supportive care. The inclusion of trained CM practitioners in a multi-disciplinary integrative team may enhance the bio-psycho-social-spiritual perspective, and provide additional practical therapies that improve the quality of life of patients confronting cancer.