Being Seen as a Unique Person is Essential in Palliative Care at Home and Nursing Homes: A Qualitative Study With Patients and Relatives.

CONTEXT: Incorporation of a palliative care approach is increasingly needed in primary care and nursing home care because most people with a life-limiting illness or frailty live there. OBJECTIVES: To explore patients' and relatives' experiences of palliative care at home and in nursing homes. METHODS: Generic qualitative research in a purposive sample of patients with an estimated life expectancy of <1 year, receiving care at home or in a nursing home, and their relatives. Data is collected through semi-structured interviews and thematically analyzed by a multidisciplinary research team. RESULTS: Seven patients and five relatives participated. Three essential elements of palliative care and their contributing factors emerged: 1) be seen (personal attention, alignment to who the patient is as a person, and feeling connected) 2) information needs (illness trajectory and multidimensional symptoms and concerns, and 3) ensuring continuity (single point of contact, availability of HCPs, and coordination of care). Patients and relatives experienced loss of control and safety if these essentials were not met, which depended largely on the practices of the individual health care professional. CONCLUSION: In both primary care and nursing home care, patients and relatives expressed the same essential elements of palliative care. They emphasized the importance of being recognized as a unique person beyond their patient status, receiving honest and clear information aligned with their preferences, and having care organized to ensure continuity. Adequate competence and skills are needed, together with a care organization that enables continuity to provide safe and person-centered care.

Healthcare professionals' perceived barriers in providing palliative care in primary care and nursing homes: a survey study.

Background: Palliative care in primary care and nursing home settings is becoming increasingly important. A multidimensional palliative care approach, provided by a multiprofessional team, is essential to meeting patients' and relatives' values, wishes, and needs. Factors that hamper the provision of palliative care in this context have not yet been fully explored. Objectives: To identify the barriers to providing palliative care for patients at home or in nursing homes as perceived by healthcare professionals. Design: Cross-sectional survey study. Methods: A convenience sample of nurses, doctors, chaplains, and rehabilitation therapists working in primary care and at nursing homes in the Netherlands is used. The primary outcome is barriers, defined as statements with ⩾20% negative response. The survey contained 56 statements on palliative reasoning, communication, and multiprofessional collaboration. Data were analyzed using descriptive statistics. Results: In total, 249 healthcare professionals completed the survey (66% completion rate). The main barriers identified in the provision of palliative care were the use of measurement tools (43%), consultation of an expert (31%), estimation of life expectancy (29%), and documentation in the electronic health record (21% and 37%). In primary care, mainly organizational barriers were identified, whereas in nursing homes, most barriers were related to care content. Chaplains and rehabilitation therapists perceived the most barriers. Conclusion: In primary care and nursing homes, there are barriers to the provision of palliative care. The provision of palliative care depends on the identification of patients with palliative care needs and is influenced by individual healthcare professionals, possibilities for consultation, and the electronic health record. An unambiguous and systematic approach within the multiprofessional team is needed, which should be patient-driven and tailored to the setting.

Validation of the Dutch version of the Edmonton Symptom Assessment System.

BACKGROUND: The Utrecht Symptom Diary (USD) is a Dutch and adapted version of the Edmonton Symptom Assessment System, a patient-reported outcome measurement (PROM) tool to asses and monitor symptoms in cancer patients. This study analyses the validity and responsiveness of the USD and the cutoff points to determine the clinical significance of a symptom score. METHODS: Observational longitudinal cohort study including adult in- and outpatients treated in an academic hospital in the Netherlands who completed at least one USD as part of routine care (2012-2019). The distress thermometer and problem checklist (DT&PC) was used as a reference PROM. Content, construct and criterion validity, responsiveness, and cutoff points are shown with prevalences, area under receiver operating characteristic (ROC) curve, Chi-squared test, Wilcoxon signed-rank test, and positive and negative predictive values, respectively. RESULTS: A total of 3913 patients completed 22 400 USDs. Content validity was confirmed for all added USD items with prevalences of ≥22%. All USD items also present on the DT&PC demonstrated a good criterion validity (ROC >0.8). Construct validity was confirmed for the USD as a whole and for the items dry mouth, dysphagia and well-being (P < .0001). USD scores differed significantly for patients when improving or deteriorating on the DT&PC which confirmed responsiveness. Optimal cutoff points (3 or 4) differed per symptom. CONCLUSION: The USD is a valid 12-item PROM for the most prevalent symptoms in cancer patients, which has content, criterion, and construct validity, and detects clinically important changes over time, in both curative and palliative phase.