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Will-to-live is defined as the psychological expression of one's commitment to life and the desire to continue living. It is an important indicator of subjective wellbeing. This study aimed to assess the will-to-live in frail older hospitalized patients and nursing home residents as well as to evaluate its association with physical frailty, tiredness of life, depression and wish-to-die. Between March and September 2021, we interviewed 186 older adults in six nursing homes and two acute geriatric wards across Belgium. Will-to-live was assessed using a single-item numeric rating scale from 0 to 5. A linear regression analysis was performed to assess the association between will-to-live and frailty (Clinical Frailty Scale) with adjustment for age, gender and setting. Mann-Whitney U test was used to evaluate the association between will-to-live and depression, tiredness of life and wish-to-die. Mean age was 85 (± 6.2) years. Mean score on the Clinical Frailty Scale was five (± 1.5) and four on the will-to-live (± 1.3). No statistical significant association was found between will-to-live and age (p = 0.991), gender (p = 0.272), setting (p = 0.627) and frailty (p = 0.629). Multiple linear regression showed no significant association with Clinical Frailty Scale (p = 0.660), after adjustment for age, gender and setting. Will-to-live was negatively associated with tiredness of life (p = 0.020) and wish-to-die (p < 0.001), but not with depression (p = 0.186). Both nursing home residents and older hospitalized patients expressed a strong or very strong will-to-live. Will-to-live was not associated with physical frailty as measured by the Clinical Frailty Scale. Nursing home residents with a weak will-to-live were more likely to have depressive symptoms. Most nursing home residents with a wish-to-die had also a low will-to-live, although some residents had both a high will-to-live and wish-to-die. [ABSTRACT FROM AUTHOR]

Background: To be able to provide high-quality palliative care, there need to be a number of organizational structures available in the nursing homes. It is unclear to what extent such structures are actually present in nursing homes in Europe. We aim to examine structural indicators for quality of palliative care in nursing homes in Europe and to evaluate the differences in terms of availability of and access to palliative care, infrastructure for residents and families, multidisciplinary meetings and quality improvement initiatives. Methods: A PACE cross-sectional study (2015) of nursing homes in Belgium, England, Finland, Italy, the Netherlands and Poland. Nursing homes (N = 322) were selected in each country via proportional stratified random sampling. Nursing home administrators (N = 305) filled in structured questionnaires on nursing home characteristics. Organization of palliative care was measured using 13 of the previously defined IMPACT structural indicators for quality of palliative care covering four domains: availability of and access to palliative care, infrastructure for residents and families, multidisciplinary meetings and quality improvement initiatives. We calculated structural indicator scores for each country and computed differences in indicator scores between the six countries. Pearson's Chi-square test was used to compute the p-value of each difference. Results: The availability of specialist palliative care teams in nursing homes was limited (6.1–48.7%). In Finland, Poland and Italy, specialist advice was also less often available (35.6–46.9%). Up to 49% of the nursing homes did not provide a dedicated contact person who maintained regular contact with the resident and relatives. The 24/7 availability of opioids for all nursing home residents was low in Poland (37.5%). Conclusions: This study found a large heterogeneity between countries in the organization of palliative care in nursing homes, although a common challenge is ensuring sufficient structural access to specialist palliative care services. Policymakers and health and palliative care organizations can use these structural indicators to identify areas for improvement in the organization of palliative care. [ABSTRACT FROM AUTHOR]

Background and Objectives With worldwide aging it is imperative to understand nurses' perceptions of tiredness of life (ToL) and their ways of dealing with an increasingly common phenomenon. Most research on ToL relates to older individuals' experiences. This study aimed to gain insight into nurses' (a) perceptions of, (b) attitude(s) toward, and (c) ways of dealing with ToL in older patients. Research Design and Methods Qualitative study with elements of constructivist grounded theory. Data were collected by means of semi-structured interviews between February 2016 and June 2017 with a purposive sample of 25 nurses working in home care and nursing homes. Results A careful consideration indicative of an oscillation between 3 levels (e.g., behavioral, cognitive, and affective) is present. The confrontation with persons having ToL instigates a cognitive process of searching to understand the state a person is in, which on its turn ensues in an emotional balancing between courage and powerlessness and a behavioral approach of action or dialogue. Discussion and Implications Our findings indicate that nurses aim to provide good care, sensitive to the older person's needs, but this process is not without ambiguity. This study provides nurse managers with valuable guidance to (a) support nursing staff in dealing with ToL, and (b) advance opportunities for emotionally sensitive care and (individual- and team-based) reflection. Finally, this study offers suggestions for education programs to incorporate ToL in curricula. [ABSTRACT FROM AUTHOR]

Background/objectives: Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death. Design and setting: In a proportionally stratified randomly selected sample of long-term care facilities in six European Union countries, nurses and long-term care facility management completed structured after-death questionnaires within 3 months of residents' death. Measurements: Nurses assessed pain/dyspnoea with Comfort Assessment in Dying with Dementia scale and checked opioid prescription by chart review. We estimated opioid underuse per country and per symptom and calculated associations of opioid underuse by multilevel, multivariable analysis. Results: Nurses' response rate was 81.6%, 95.7% for managers. Of 901 deceased residents with pain/dyspnoea reported in the last week, 10.6% had dyspnoea, 34.4% had pain and 55.0% had both symptoms. Opioid underuse per country was 19.2% (95% confidence interval: 12.9–27.2) in the Netherlands, 25.2% (18.3–33.6) in Belgium, 29.3% (16.9–45.8) in England, 33.7% (26.2–42.2) in Finland, 64.6% (52.0–75.4) in Italy and 79.1% (71.2–85.3) in Poland (p < 0.001). Opioid underuse was 57.2% (33.0–78.4) for dyspnoea, 41.2% (95% confidence interval: 21.9–63.8) for pain and 37.4% (19.4–59.6) for both symptoms (p = 0.013). Odds of opioid underuse were lower (odds ratio: 0.33; 95% confidence interval: 0.20–0.54) when pain was assessed. Conclusion: Opioid underuse differs between countries. Pain and dyspnoea should be formally assessed at the end-of-life and taken into account in physicians orders. [ABSTRACT FROM AUTHOR]

Aim The aim of this study was to explore how nurses and care-assistants (nursing staff) working in six Flemish nursing homes experience and describe their involvement in grief care. Background Although grief in older people is widely described in literature, less is known about how nursing staff in nursing homes offer and perceive grief care. Design A qualitative research design with elements of constructivist grounded theory was used. Methods Loosely structured face-to-face interviews were done with fourteen nurses and care-assistants. Data were collected from October 2013-March 2014. Interview transcripts were analysed using the Qualitative Analysis Guide of Leuven ( QUAGOL) method with support of NVivo 10. Findings Grief care in nursing homes is characterized by a complex tension between two care dimensions: (1) being involved while keeping an appropriate distance; and (2) being while doing. Nursing staff described key enablers and influencing factors for grief care at the level of both the individual and the organizational context. Conclusion Findings suggest an established personal sensitivity for grief care considered from the nursing staff points of view. Nevertheless, a common denominator was the necessity to further develop a supportive and multidisciplinary grief care policy ingrained in the existing care culture. Suggested components of this grief care policy are: (a) centring attention on non-death-related loss and the cumulative nature of loss in residents; (b) building capacity by means of reflective practices; and (c) the importance of self-care strategies for nursing staff. Furthermore, the findings from this study point towards a need for education and training. [ABSTRACT FROM AUTHOR]

Context: Symptom management is essential in the end-of-life care of long-term care facility residents.Objectives: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.Methods: A postmortem survey in Belgium, The Netherlands, and Finland: staff and family carers completed the End-of-Life in Dementia-Comfort Assessment in Dying scale, rating 14 symptoms on a one-point to three-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale, and total scores at a group level and inter-rater agreement and percentage of perfect agreement at a resident level.Results: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia-Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement κ ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.Conclusion: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities. [ABSTRACT FROM AUTHOR]

Objectives To validate a newly developed multiple symptom self-assessment tool in nursing homes. Design Thirty prevalent symptoms identified in the literature were classified by a 2-round Delphi procedure to a top 10 of the most relevant, burdensome symptoms. Because no existing symptom scale fully covered this top 10, we developed a new scale, consisting of a horizontal numerical scale for the top 10 symptoms, with the possibility to add and rate 3 other symptoms. This scale was validated. Setting and participants Hundred seventy-four participants, mean age 85 (±5.94) years, were recruited from 7 nursing homes (86%) and 3 acute geriatric wards (14%). Methods To test the construct validity, participants with and without a palliative status were enrolled. Participants completed the Symptom Assessment to Improve Symptom Control for Institutionalized Elderly (SATISFIE) scale on day 0 and day 1 (intrarater reliability). Nurses completed the scale on day 0 (inter-rater reliability). Descriptive statistics described the characteristics of the study population and symptom scores. Differences in symptom scores between palliative and nonpalliative participants were analyzed with the Mann-Whitney U test. Intrarater and inter-rater reliability were calculated by means of an intraclass correlation coefficient. Factor analysis searched for possible symptom clusters. Feasibility was evaluated by measuring the assessment time and by providing a questionnaire for the nurses. Results In the nonpalliative group (n = 130), the highest self-rated median scores were pain on day 1 [median 3, interquartile range (IQR) 0–5] and pain on day 2. In the palliative group (n = 44), the highest median self-rated scores were fatigue on day 1 [median 5 (IQR 0–6)], lack of energy on day 1 and 2 [both median 5 (IQR 0–8)]; and depressed feeling on day 2 [median 3 (IQR 0–5)]. Nurse assessments median scores were the highest for depressed feeling [median 5 (IQR 1–7)], fatigue [median 4.5 (IQR 0–6.5)], and lack of energy, [median 3 (IQR 0–6)] in the palliative group. In the nonpalliative group, none of the median scores was 3 or more. Intraclass correlation coefficients for intrarater reliability varied between 0.65 and 0.89 and for inter-rater reliability (patients-nurses) between 0.18 and 0.63. Mean assessment time for nurses was 2.0 minutes [standard deviation (SD) = 1.01]. For participants, it decreased from 10.5 minutes (SD = 5.41) at the first assessment to 7.5 minutes (SD = 3.72) at the second assessment. Nurses determined the SATISFIE instrument to be useful, applicable in daily practice, and sufficiently comprehensible for the patients. Conclusions The SATISFIE scale is a valid and feasible instrument for regular, multiple symptom assessment in institutionalized older persons. [ABSTRACT FROM AUTHOR]

Objectives Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level. Design and Methods To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. Conclusion Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes. [ABSTRACT FROM AUTHOR]