Large differences in the organization of palliative care in nursing homes in six European countries: findings from the PACE cross-sectional study.

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.

Consensus on treatment for residents in long-term care facilities: perspectives from relatives and care staff in the PACE cross-sectional study in 6 European countries.

BACKGROUND: In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, from the perspective of relatives and care staff. Another aim was to assess which factors are associated with reporting that full consensus was reached, from the perspective of care staff and relatives. METHODS: In Belgium, England, Finland, Italy, the Netherlands and Poland a random sample of representative long-term care facilities reported all deaths of residents in the previous three months (n = 1707). This study included residents about whom care staff (n = 1284) and relatives (n = 790) indicated in questionnaires the degree of consensus among all involved in the decision or care process. To account for clustering on facility level, Generalized Estimating Equations were conducted to analyse the degree of consensus across countries and factors associated with full consensus. RESULTS: Relatives indicated full consensus in more than half of the residents in all countries (NL 57.9% - EN 68%), except in Finland (40.7%). Care staff reported full consensus in 59.5% of residents in Finland to 86.1% of residents in England. Relatives more likely reported full consensus when: the resident was more comfortable or talked about treatment preferences, a care provider explained what palliative care is, family-physician communication was well perceived, their relation to the resident was other than child (compared to spouse/partner) or if they lived in Poland or Belgium (compared to Finland). Care staff more often indicated full consensus when they rated a higher comfort level of the resident, or if they lived in Italy, the Netherland, Poland or England (compared to Finland). CONCLUSIONS: In most countries the frequency of full consensus among all involved in care decisions was relatively high. Across countries care staff indicated full consensus more often and no consensus less often than relatives. Advance care planning, comfort and good communication between relatives and care professionals could play a role in achieving full consensus.

Care staff's self-efficacy regarding end-of-life communication in the long-term care setting: Results of the PACE cross-sectional study in six European countries.

BACKGROUND: An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions among long-term care staff in Europe and related factors. OBJECTIVES: Firstly, to describe and compare the self-efficacy level of long-term care staff regarding end-of-life communication across six countries; secondly, to analyse characteristics of staff and facilities which are associated to self-efficacy towards end-of-life communication. DESIGN: Cross-sectional survey. SETTINGS: Long-term care facilities in Belgium, England, Finland, Italy, the Netherlands and Poland (n = 290). PARTICIPANTS: Nurses and care assistants (n = 1680) completed a self-efficacy scale and were included in the analyses. METHODS: Care staff rated their self-efficacy (confidence in their own ability) on a scale of 0 (cannot do at all) to 7 -(certain can do) of the 8-item communication subscale of the Self-efficacy in End-of-Life Care survey. Staff characteristics included age, gender, professional role, education level, training in palliative care and years working in direct care. Facility characteristics included facility type and availability of palliative care guidelines, palliative care team and palliative care advice. Analyses were conducted using Generalized Estimating Equations, to account for clustering of data at facility level. RESULTS: Thde proportion of staff with a mean self-efficacy score >5 was highest in the Netherlands (76.4%), ranged between 55.9% and 60.0% in Belgium, Poland, England and Finland and was lowest in Italy (29.6%). Higher levels of self-efficacy (>5) were associated with: staff over 50 years of age (OR 1.86 95% CI[1.30-2.65]); nurses (compared to care assistants) (1.75 [1.20-2.54]); completion of higher secondary or tertiary education (respectively 2.22 [1.53-3.21] and 3.11 [2.05-4.71]; formal palliative care training (1.71 [1.32-2.21]); working in direct care for over 10 years (1.53 [1.14-2.05]); working in a facility with care provided by onsite nurses and care assistants and offsite physicians (1.86 [1.30-2.65]); and working in a facility where guidelines for palliative care were available (1.39 [1.03-1.88]). CONCLUSION: Self-efficacy towards end-of-life communication was most often low in Italy and most often high in the Netherlands. In all countries, low self-efficacy was found relatively often for discussion of prognosis. Palliative care education and guidelines for palliative care could improve the self-efficacy of care staff.

Physician Visits and Recognition of Residents' Terminal Phase in Long-Term Care Facilities: Findings From the PACE Cross-Sectional Study in 6 EU Countries.

OBJECTIVES: To describe the relation between physician visits and physicians' recognition of a resident's terminal phase in long-term care facilities (LTCFs) in Belgium, England, Finland, Italy, the Netherlands, and Poland. DESIGN: In each country, a cross-sectional study was conducted across representative samples of LTCFs. Participating LTCFs reported all deaths of residents in the previous 3 months, and structured questionnaires were sent to several proxy respondents including the treating physician. SETTING AND PARTICIPANTS: 1094 residents in 239 LTCFs, about whom 505 physicians returned the questionnaire. MEASURES: Number of physician visits, the resident's main treatment goal, whether physicians recognized the resident's terminal phase and expected the resident's death, and resident and physician characteristics. RESULTS: The number of physician visits to residents varied widely between countries, ranging from a median of 15 visits in the last 3 months of life in Poland to 5 in England, and from 4 visits in the last week of life in the Netherlands to 1 in England. Among all countries, physicians from Poland and Italy were least inclined to recognize that the resident was in the terminal phase (63.0% in Poland compared to 80.3% in the Netherlands), and residents in these countries had palliation as main treatment goal the least (31.8% in Italy compared to 92.6% in the Netherlands). Overall however, there were positive associations between the number of physician visits and the recognition of the resident's terminal phase and between the number of physician visits and the resident having palliation as main treatment goal in the last week of life. CONCLUSIONS AND IMPLICATIONS: This study suggests that LTCFs should be encouraged to work collaboratively with physicians to involve them as much as possible in caring for their residents. Joint working will facilitate the recognition of a resident's terminal phase and the timely provision of palliative care.