Marieke Henrica Johanna Van Den Beuken – Van Everdingen

Background: Dry mouth is a disruptive symptom in patients with life-limiting illnesses. It has one of the highest symptom burdens in palliative care and a significant impact on quality of life. Nonetheless, dry mouth remains an underacknowledged and undertreated symptom with limited evidence-based interventions. Aim: To examine the quality and content of guidelines for the treatment of dry mouth in patients with life-limiting illnesses. Design: A systematic review of clinical practice guidelines was conducted (preregistered in PROSPERO in 2023). PRISMA reporting guidelines were followed. The search strategy involved 4 scientific databases and 9 guideline databases, targeted searches and stakeholder outreach for 183 countries/regions. Quality and content were analysed using the AGREE II instrument and directed content analysis, respectively. Data sources: Seventy-two clinical practice guidelines from 42 countries across 6 continents were included. Results: Only two guidelines were recommended for use based on the AGREE II quality appraisal. Four main themes emerged from the content analysis: (1) Assessment of dry mouth by medical history, oral examination and measuring instruments ( n = 32, n = 36 and n = 19 guidelines respectively); (2) Oral care ( n = 68); (3) Management by treating causes ( n = 40), saliva substitutes ( n = 66) and stimulants ( n = 62), diet ( n = 45), and medication ( n = 40); and (4) Patient and family involvement ( n = 43). Conclusion: Despite differences in quality and comprehensiveness of guidelines for treatment of dry mouth in palliative care, many care practices are shared worldwide. This review highlights the need for methodologically robust guidelines with a strong evidence base that specifically focus on dry mouth.

Background: Continuous palliative sedation (CPS) and continuous opioid infusion (COI) are two widely used interventions to relief suffering and manage symptoms in the terminal phase. National guidelines exist for both. This study investigated guideline deviations in a hospital setting. Aim: The main objective was to assess the prevalence of deviations from the Dutch guidelines for CPS and COI, potentially leading to inappropriate care. The secondary objective was to investigate whether involvement of the palliative consulting team and pain team resulted in less guideline deviations. Design: Patient records from hospitalized patients who deceased between December 2022 and December 2023 who received CPS and/or COI as end-of-life care, were retrospectively analysed. Results: 101 patients who received CPS and 129 patients who received COI as end-of-life care were included. In patients receiving CPS, clinically relevant guideline deviations were found in 52.5% of patients, mostly related to change in opioid dose of COI during CPS and other opioid-related use during CPS. In 76.7% of the patients with COI, one or more guideline deviations were found. These were mostly related to opioid (starting) dose and use of morphine in patients with impaired renal function. Involvement of the palliative consulting team and pain team resulted in slightly less guideline deviations. Conclusion: This evaluation on CPS and COI guideline deviations found one or more deviations in the majority of patients. Further research and training is required to identify methods to improve knowledge and improve the use of the guidelines on CPS and COI as end-of-life care.

Purpose: To explore informal caregivers’ experiences and preferences regarding decision-making and care processes following the Spinal Phenol IN Glycerol (SPING) block as non-operative pain management in frail older care recipients with a hip fracture. The aim is to improve the care process of the SPING block and improving communication with and support for informal caregivers. Methods: A single-center qualitative study was conducted at Amphia Hospital (the Netherlands) using semi-structured interviews. Informal caregivers of frail, older patients with hip fracture treated with SPING block were purposively sampled until saturation was reached. Interviews were audio-recorded and transcribed verbatim for thematically analysis. Results: Four dominant themes were identified: (1) Pain relief as a core treatment priority; (2) Complex decision-making and the caregiver’s moral burden; (3) Emotional toll and coping with witnessing decline; and (4) Shifting roles and long-term caregiving burden. SPING block was viewed as an acceptable, often preferred non-operative pain management. Informal caregivers valued rapid analgesia and the possibility of early discharge yet described insufficient communication and uncertainty around long-term effects. The caregiving burden extended beyond hospital discharge, with many reporting distress and role conflict. Conclusion: Informal caregivers prioritize effective analgesia, compassionate communication and continuity of care when navigating decisions about SPING block in the context of frailty and end-of-life care. These findings underscore the importance of integrated, multidisciplinary protocols that facilitate timely decision-making, align with patient goals and address caregiver needs across care settings. Prospective studies are warranted to evaluate patient-centered outcomes of SPING block and its long-term analgesic effects.

Background: Identifying hospital inpatients who are approaching the end of life is essential for providing optimal palliative care. The study aims to determine the prevalence of hospital inpatients with a potentially limited life expectancy (< 12 months) using the surprise question, and to assess the extent of specialist palliative care team (PCT) involvement in this population. Methods: On the 16 ^th of April 2021, we conducted a multi-center, cross-sectional, nationwide study in Dutch hospitals using a flash mob design. Nurses and physicians independently answered the surprise question (SQ) for all adult hospital inpatients: “Would you be surprised if this patient died within the next 12 months?”. If answered negatively, they were then asked to indicate if they estimated life expectancy to be less than 3 months, and whether PCTs were involved. Results: In total, 48 of 68 (70%) Dutch hospitals participated in the study. Nurses and physicians filled out 16,607 questionnaires regarding 8,768 patients. Of 8,768 patients, 80% were admitted because of non-malignant diseases. Physicians answered the SQ negatively for 2,826 (35%) patients. Physicians indicated that PCT was involved in 6% of these patients and that PCT referral was considered useful for another 6%. For patients with an estimated life expectancy < 3 months (n=582), these proportions increased to 15% and 13%, respectively. Conclusions: A third of all hospital inpatients had a possible life-limiting condition and may benefit from palliative care and advance care planning. Future studies should focus on exploring the palliative care needs of hospital inpatients and possible benefits of timely implementation of palliative care.

Background: Patients with advanced cancer often have emotional problems such as inadequate coping, fear of new metastases, or the prospect of enduring physical suffering. Some will need professional emotional support to cope with these problems. Accurately identifying these patients requires a thorough understanding of their characteristics. Aim: To assess the need for emotional supportive care in patients with advanced cancer who have emotional problems, and their associated sociodemographic, disease-related, clinical, and psychosocial characteristics. Design: Prospective multicenter observational study on experienced quality of care and quality of life in patients with advanced cancer and their relatives. Setting/Participants: Baseline data were used of 892 patients with advanced cancer who had emotional problems. Results: In total, 92% of the patients with advanced cancer had emotional problems and 33% of these had emotional supportive care needs. Most patients without emotional supportive care needs had contact with an oncology nurse (70%), while a minority received additional psychosocial support. Our multivariable logistic regression analysis shows that fatigue (odds ratio [OR]: 2.65, 95% confidence interval [CI]: 1.82-3.86), pain (OR: 1.50, 95% CI: 1.07-2.12), and less social support (OR: 0.95, 95% CI: 0.91-0.99) were associated with having emotional supportive care needs. Conclusions: One-third of patients with advanced cancer who have emotional problems in the eQuiPe study report emotional supportive care needs. Oncologists and oncology nurses should be aware that emotional supportive care needs are more common in patients with advanced cancer who experience increased pain, fatigue, or decreased social support in addition to their emotional problems. The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

Background/Objectives: Spinal Phenol IN Glycerol (SPING) block is a novel palliative pain treatment for the non-operative management of proximal femur fractures (PFFs) in older adults living with frailty. Effective pain management that aligns with patient preferences and minimizes opioid use is critical in this setting. This study evaluated the patient, safety, and process outcomes of SPING block in this population. Methods: A retrospective cohort study was conducted in a suburban teaching hospital from March 2021 to June 2024, which included sixty-eight older adults living with frailty that suffered from a PFF and received SPING block. Data were collected from the Electronic Patient Records. The patient living situation was visualized with a Sankey diagram. Changes in pain scores and opioid use were assessed using the Wilcoxon Signed Rank test. Results: The median patient age was 89 years (Interquartile range (IQR) 83–92). Most were severely or terminally ill (American Society of Anesthesiologists (ASA) ≥ 4, 72%) and had cognitive impairment or dementia (68%). SPING block was effective in 93% of patients, significantly reducing median pain scores (4 [IQR 3–5] to 0 [IQR 0–1], p < 0.001) and opioid use (15 mg/day [IQR 4–30] to 0 mg/day [IQR 0–0], p < 0.001). Within 24 h, 84% could sit upright and 44% could transfer between their bed and chair. The median time to discharge was one day (IQR 0–3), with a median survival of 13 days (IQR 7–44). Conclusions: This study supports SPING block as a viable option for older adults living with frailty suffering from a PFF who opt for non-operative management in a palliative setting. SPING block for PFFs in a palliative setting offers effective pain relief, reduces opioid use, and enables mobility for older adults living with frailty. Follow-up is essential to monitor efficacy and safety. Prospective studies are needed to confirm these findings.

Introduction: This study aimed to assess the effect of integrated palliative care (IPC) on potentially inappropriate end- of-life care and healthcare-costs in the last 30 days of life in the Netherlands. Methods: Nationwide health-insurance claims data were used to assess potentially inappropriate end-of-life care (≥2 emergency room visits; ≥2 hospital admissions; >14 days hospitalization; chemotherapy; ICU admission; hospital death) and healthcare-costs in all deceased adults in IPC regions pre- and post- implementation and in those receiving IPC compared to a 1:2 matched control group. Results: In regions providing IPC deceased adults (n = 37,468) received significantly less potentially inappropriate end-of-life care post-implementation compared to pre-implementation (26.5% vs 27.9%; p < 0.05). Deceased adults who received IPC (n = 210) also received significantly less potentially inappropriate end-of-life care compared to a matched control group (14.8% vs 28.3%; p < 0.05). Mean hospital costs significantly decreased for deceased adults who received IPC (€2,817), while mean costs increased for general practitioner services (€311) and home care (€1,632). Discussion: These results highlight the importance of implementation of integrated palliative care and suitable payment. Further research in a larger sample is needed. Conclusion: This study shows less potentially inappropriate end-of-life care and a shift in healthcare costs from hospital to general practitioner and home care with IPC. Academic Disciplines: Medicine; Nursing; Health economics Research Sample: Deceased adults

Objectives: This study aimed to develop the conversation tool “I-HARP for COPD” for timely identification of palliative care needs in Dutch patients with chronic obstructive pulmonary disease (COPD).Methods: An iterative and participatory research design was used to develop “I-HARP for COPD”. There were 2 phases to the development of “I-HARP for COPD”: content development and testing. A review of current literature, parallel focus groups, and a questionnaire among experts were used to develop the content of “I-HARP for COPD”. “I-HARP for COPD” was then assessed by health-care professionals (HCPs) in clinical practice for understanding, difficulty, and relevance.Results: A total of 46 HCPs, 6 patients, 1 informal caregiver, and 1 bereaved informal caregiver participated in this study. “I-HARP for COPD” included 14 screening questions, additional in-depth questions, and recommendations to address identified needs. The content of “I-HARP for COPD” was accepted by 86.2% of the HCPs.Significance of results: “I-HARP for COPD” was successfully developed for providing guidance in the palliative care of Dutch patients with COPD and their informal caregivers. By supporting HCPs with “I-HARP for COPD”, they are better able to timely identify and direct palliative care needs.