Challenges in recognizing and discussing changes in a resident's condition in the palliative phase: focus group discussions with nursing staff working in nursing homes about their experiences.

BACKGROUND: Most nursing home residents have complex care needs, require palliative care and eventually die in these facilities. Timely recognition of changes in a resident's condition is crucial for providing appropriate care. Observations by nursing staff play a significant role in identifying and interpreting these changes. METHODS: Focus group discussions were conducted with nursing staff from ten nursing homes in the Netherlands to explore their experiences and challenges in recognizing and discussing changes in a resident's condition. These discussions were analysed following the principles of thematic analysis. RESULTS: The analysis of the challenges nursing staff face in identifying and interpreting changes in a resident's condition, resulted in three themes. First, that recognizing changes is considered complex, because it requires specialized knowledge and skills that is generally not part of their education and must partly be learned in practice. This also depends on how familiar the nursing staff is with the resident. Furthermore, different people observe residents through different lenses, depending on their relation and experiences with residents. This could lead to disagreements about the resident's condition. Lastly, organizational structures such as the resources available to document and discuss a resident's condition and the hierarchy between nursing home professionals often hindered discussions and sharing observations. CONCLUSION: Nursing staff's experiences highlight the complexity of recognizing and discussing changes in nursing home residents' conditions. While supporting the observational skills of nursing staff is important, it is not enough to improve the quality of care for nursing home residents with palliative care needs. As nursing staff experiences challenges at different, interrelated levels, improving the process of recognizing and discussing changes in nursing home residents requires an integrated approach in which the organization strengthens the position of nursing staff. It is important that their observations become a valued and integrated and part of nursing home care.

[The nurse's role in the process of advance care planning]. / De rol van de verzorgende en verpleegkundige in het advance care planning proces.

The COVID-19 pandemic and its impact on older and frail people underlines the importance of advance care planning (ACP). ACP is a dynamic communication process involving patients, families and healthcare providers, which serves to discuss and document wishes and goals for future care. Currently, ACP practice is often suboptimal. This implies that important decisions about care and treatment may need to be made acutely in crises. Many factors contribute to suboptimal ACP practice. One such factor is ambiguity regarding roles and responsibilities of different disciplines in the ACP-process. The perception that having ACP conversations is primarily a physician's task is a misconception. Specific skills that could contribute to a holistic and person-centered ACP-process are largely lacking in nursing curricula and therefore, may be insufficient and under-utilized. For instance, nursing staff could involve persons in conversations about meaning, quality of life, loss and grief as a part of ACP. Moreover, they may communicate a patient's wishes to other healthcare providers including physicians. Acknowledgement of this potential role, by physicians as well as by nursing staff themselves, is needed for ACP to become a truly interprofessional process.

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.

Incidence of pneumonia in nursing home residents with dementia in the Netherlands: an estimation based on three differently designed studies.

Pneumonia leads to considerable morbidity and mortality in nursing home residents with dementia. We assessed pneumonia incidence based on data from three different studies: (1) real-time national surveillance of healthcare-associated infections in nursing home residents in 2009-2015; (2) a randomized controlled trial in 2012-2015 to assess effects of a practical guideline in nursing home residents with dementia and pneumonia; and (3) a study in 2007-2010 to assess quality of dying in newly admitted nursing home residents with dementia. In national surveillance data, pneumonia incidence was calculated separately for psychogeriatric and somatic beds, as a proxy for residents with and without dementia. Weekly pneumonia incidence was significantly lower per 1000 psychogeriatric beds (3·9; 95% confidence interval (CI) 3·2-4·6) compared with 1000 somatic beds (5·7; 95% CI 5·1-6·3). Annual incidence per 1000 psychogeriatric beds was similar in national surveillance (range 78·9-117·1) and the trial (range 71·0-94·3), and significantly higher in newly admitted dementia residents (range 267·3-363·2). The incidence was highest during the first months after admission when compared with residents with longer stay. In conclusion, follow-up of pneumonia in newly admitted dementia residents may result in higher incidence, possibly due to higher risk in this population.

Verwijzen naar het hospice: verwijsgedrag van artsen en ervaren belemmeringen in Deventer en omgeving.

UNLABELLED: PHYSICIANS' REFERRAL PATTERNS AND PERCEIVED BARRIERS IN THE DEVENTER REGION IN THE NETHERLANDS: OBJECTIVE: To examine physicians' perceived referral patterns and barriers to referral of terminally ill patients to a hospice (institute). DESIGN: Survey study among physicians practicing in hospital and other settings in the region of Deventer, The Netherlands, in 2011-2012. METHOD: We translated two available American instruments into Dutch. The questionnaire assessed hospice referral, knowledge about hospice, attitudes and barriers and reasons not to refer. We queried physicians who had referred patients to the local hospice about expectations and suggested areas for improvement with two open-ended items. RESULTS: In total, 240 physicians received the questionnaire. The response rate was 47%. The physicians were generally positive about hospice care. They indicated experiencing few barriers in hospice referrals, but 32% of the physicians (21% of those practicing in the hospital, and 39% in other settings), indicated the patient being unready as a strong barrier. Half of the physicians (51%) believed that hospice is being underutilized and 22% (35% and 14%, respectively) thought that they would refer more frequently if they had more knowledge about hospice care. Of the physicians, 35% answered all six knowledge questions correctly. Communication with the hospice may be improved. CONCLUSION: Despite positive attitudes toward hospice care, it may be underutilized due to poor knowledge and communication with the hospice. Perhaps, this is also due to limited patient-physician communication on prognosis, which further research may address.

Interventions to Promote End-of-Life Conversations: A Systematic Review and Meta-Analysis.

CONTEXT: Although several interventions aimed to promote end-of-life conversations are available, it is unclear whether and how these affect delivery of end-of-life conversations. Measuring the processes associated with high-quality end-of-life care may trigger improvement. OBJECTIVES: To estimate the effect of interventions aimed to promote end-of-life conversations in clinical encounters with patients with advanced chronic or terminal illness or their family, on process indicators of end-of-life conversations. METHODS: Systematic review with meta-analysis (PROSPERO no. CRD42021289471). Four databases (PubMed, CINAHL, PsycINFO, and Scopus) were searched up to September 30, 2021. The primary outcomes were any process indicators of end-of-life conversations. Results of pairwise meta-analyses were presented as Risk Ratio (RR) for occurrence, standardized mean difference (SMD) for quality and ratio of means (ROM) for duration. Meta-analysis was not performed when fewer than four studies were available. RESULTS: A total of 4,663 articles were scanned. Eighteen studies were included in the systematic review and 16 entered at least one meta-analysis: documented occurrence (n = 8), patient-reported occurrence (n = 4), patient-reported-quality (n = 4), duration (n = 4). There was significant variability in settings, patients' clinical conditions, and professionals. No significant effect of interventions on documented occurrence (RR 1.54, 95% CI 0.84-2.84; I2 91%), patient-reported occurrence (RR 1.52, 95% CI 0.80-2.91; I2 95%), patient-reported quality (SMD 0.83, 95% CI -1.06 to 2.71; I2 99%), or duration (ROM 1.20, 95% CI 0.95-1.51; I2 65%) of end-of-life conversations was found. Data on frequency were conflicting. Interventions targeting multiple stakeholders promoted earlier and more comprehensive conversations. CONCLUSION: Heterogeneity was considerable, but findings suggest no significant effect of interventions on occurrence, patient-reported quality and duration of end-of-life conversations. Nevertheless, we found indications for interventions targeting multiple stakeholders to promote earlier and more comprehensive conversations.

[Evaluation of a family booklet on comfort care in dementia by professional and family caregivers]. / Een handreiking voor familieleden over palliatieve zorg bij dementie: evaluatie door zorgverleners en familieleden.

Families of nursing home residents with dementia are usually involved in care and treatment decisions. To this end, family needs to be informed on the course of the dementia and possible palliative care. Based on a Canadian booklet, we developed an adapted version for use in the Netherlands. Elderly care physicians (n = 30), nurses (n = 38), and bereaved families (n = 59) evaluated the booklet and possible implementation strategies. All respondents confirmed that in general, there is a need of an information brochure on comfort care and end-of-life issues for families. Most (93%) families believed they would have found the booklet useful when received earlier. Compared to the physicians, nurses more frequently found the booklet useful to most or all families (p = 0.04). Acceptance, as measured on an 8-item scale, was highest among families and lowest among physicians. Overall usefulness was often perceived as high (means 7.9 to 8.3; scale range 0-10; SD 0.9 to 1.4) and did not differ across groups of respondents (p = 0.29). All respondents agreed that professional caregivers should have a role in providing the booklet. Additionally, half (53%; no difference across groups) favoured availability of the booklet through families' own initiative; some already before admission. In conclusion, there is a high need for written information on palliative care. The booklet is highly appreciated. A further improved version may support professional and family caregivers in practice.

Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families.

After-death reporting by proxies on end-of-life outcomes is used in research and can also be used to target institutions directly to improve practice. We compared the scores of family caregivers and nurses on two End-of-Life in Dementia Scales (EOLD) scales: Symptom Management (SM; range 0-45) over the last 3 months of life and Comfort Assessment in Dying (CAD; range 14-42). Higher scores represent better outcomes. Four Dutch nursing homes retrospectively enrolled 48 decedents with dementia. Total mean scores for family caregivers and nurses were 28.7 (SD 9.6) versus 25.2 (SD 12.7) for the SM and 31.7 (SD 5.5) versus 32.8 (SD 8.2) for the CAD. Mean item scores also did not differ much. Concordance Correlation Coefficients were 0.42 (SM) and 0.04 (CAD). Mean evaluations of end of life with dementia corresponded reasonably well between family and professional caregivers, but correspondence of individual observations was poor to moderate, suggesting serious differences in individual ratings but little systematic difference.

[Measuring quality of life in nursing home residents with severe dementia: psychometric properties of the QUALID scale]. / Het meten van kwaliteit van leven bij ernstig demente verpleeghuisbewoners: psychometrische eigenschappen van de QUALID-schaal.

The Quality of Life in Late Stage Dementia (QUALID) Scale is an instrument to measure quality of life in patients with severe dementia over the last week by means of an interview with a nurse or nurse aid. We interviewed nurse aids on 48 patients with severe dementia in two nursing homes in The Netherlands to determine the psychometric properties of the Dutch translation of the QUALID. Test- retest reliability was good with an Concordance Correlation Coefficient (CCC) of 0.82, (95% Confidence Interval, CI 0.70 - 0.90); interrater reliability was moderate, with an CCC of 0.49 (CI: 0.17-0.72). There was a significant, but low correlation between QUALID ratings and discomfort ratings as observed with the Discomfort Scale-Dementia of Alzheimer Type (DS-DAT), amounting 0.32 (CI: 0.04 - 0.56). The QUALID seems appropriate for measuring quality of life in patients with advanced dementia, when one and the same rater monitors a patient over time in a longitudinal study.

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.

Benefits and pitfalls of pooling datasets from comparable observational studies: combining US and Dutch nursing home studies.

Different research groups sometimes carry out comparable studies. Combining the data can make it possible to address additional research questions, particularly for small observational studies such as those frequently seen in palliative care research. We present a systematic approach to pool individual subject data from observational studies that addresses differences in research design, illustrating the approach with two prospective observational studies on treatment and outcomes of lower respiratory tract infection in US and Dutch nursing home residents. Benefits of pooling individual subject data include enhanced statistical power, the ability to compare outcomes and validate models across sites or settings, and opportunities to develop new measures. In our pooled dataset, we were able to evaluate treatments and end-of-life decisions for comparable patients across settings, which suggested opportunities to improve care. In addition, greater variation in participants and treatments in the combined dataset allowed for subgroup analyses and interaction hypotheses, but required more complex analytic methods. Pitfalls included the large amount of time required for equating study procedures and variables and the need for additional funding.

[Pneumonia mortality risk in patients with dementia: nursing home physicians' use and evaluation of a prognostic score]. / Kans op overlijden aan een pneumonie van patiënten met dementie: gebruik en beoordeling van een prognostische score door verpleeghuisartsen.

A validated prognostic score for mortality risk 14 days after antibiotics treatment of nursing home residents with dementia and pneumonia is available. Of the nursing homes contacted, 96% was prepared to participate in a clinical impact analysis to examine usefulness of the score in practice. After randomising nursing homes, physicians of 27 homes in the intervention group were asked to complete a questionnaire and use the score for the next case of pneumonia; the control group comprised physicians of the 27 other homes who only completed the questionnaire. The 38 respondents from the control group who all reported about a single patient did not differ from the respondents of the intervention group (31 physicians enrolled 34 patients). Only in 24 cases did physicians calculate the score. For 79% of those patients, the score was (at least somewhat) useful, but mostly to train prognostication competencies and for better documentation of prognosis; frequently treatment decisions had already been made. Of the total group of respondents, the majority was positive about the use of prognostic scores in general, but no-one in the participating homes had any experience with it. The prognostic score is potentially useful for an important group of patients with pneumonia, but further implementation research and inclusion of prognostic instruments in training curricula is needed.

[End-of-life with dementia in Dutch antroposofic and traditional nursing homes]. / Zorg aan het levenseinde bij bewoners met dementie in antroposofische en reguliere verpleeghuizen. Een pilot studie.

Every year more than 20,000 people with dementia die in Dutch nursing homes and this number steadily increases. Therefore, the importance of good end-of-life care for these patients including physical, psychosocial and spiritual care is evident. Although the training standards for Dutch nursing home physicians and nurses share a common standard, the philosophy of a nursing home may affect end-of-life care strategies for the residents. We compared end of life of nursing home residents with dementia in two anthroposophic and two traditional nursing homes in a retrospective study using the most specific instrument available: the End-of-Life in Dementia scales (EOLD). Family caregivers completed the EOLD questionnaire. There was no difference in mean Satisfaction With Care scale scores between both types of nursing homes: 32.9 (SD 4.3) and 31.6 (SD 4.9), respectively. The anthroposophic nursing homes had significant higher scores on the 'Symptom Management' ((32.9 (SD 7.5) versus 26.9 (SD 9.5)), and 'Comfort Assessment in Dying' scales (34.0 (SD 3.9) versus 30.8 (SD 5.8)) and on its subscale Well Being (7.7 (SD 1.2) versus 6.7 (SD 2.1)). Our results suggest that death with dementia was more favourable in anthroposophic nursing homes than in regular homes. The results inform further prospective studies on nursing homes how this and other philosophies are translated into daily nursing home practice, including decision making in multi-disciplinary teams, family consultation, and complementary non-pharmacological therapies.

Dementia severity, decline and improvement after a lower respiratory tract infection.

OBJECTIVE: To assess decline and improvement in functional characteristics, cognition and restraint use after a lower respiratory tract infection (LRI) and describe variation by dementia severity. DESIGN: Two prospective cohort studies. SETTING: Nursing homes in the Netherlands and in Missouri, USA. PARTICIPANTS: 227 Dutch and 396 Missouri nursing home residents with dementia and LRI who were treated with antibiotics. MEASUREMENTS: We compared functional characteristics (Activities of Daily Living [ADL], bedfast status, pressure ulcers, incontinence), cognition and restraint use 3 months after an LRI with status 1 to 2 weeks before diagnosis. RESULTS: Residents with LRI frequently declined on all measures, but many also improved, including those with severe dementia. On the measures where residents could still decline further, residents with severe dementia showed higher variability than residents with less severe dementia. This was most obvious for bedfast status and restraint use. CONCLUSIONS: Compared with less severely demented residents, residents with severe dementia showed more decline on measures where they still had room for change. However, on these measures, residents with severe dementia also improved more often. LRI does not necessarily lead to deterioration even in individuals with severe dementia.

[Dying with dementia: what do we know about it?]. / Sterven met dementie: wat weten wij ervan?

Death with dementia is increasingly common, yet research on end of life with dementia and end-of-life care for such patients has been sparse. This article reviews recent studies in this area, most of which were done in US nursing homes. Research focused on five domains: prognosis, decision making, treatment, patient's health and suffering, and family's circumstances and satisfaction with care. Prognostication focused on developing risk scores for mortality within 6 months or a year, and while decision making was usually studied qualitatively, the other three domains were largely covered by a series of small, retrospective studies. Future direction in research is discussed, including the ongoing CASCADE project in Boston and the Dutch End of Life with Dementia Study (DEOLD). Both of these prospective studies in nursing home residents assess decision making, as well as factors associated with family's satisfaction and patient suffering. These studies will provide insight into interventions that are most likely to improve end of life care of patients with dementia in the respective countries and elsewhere.

[A cross-cultural study of physician treatment decisions in relation to demented nursing home patients who develop pneumonia]. / Een cultuurvergelijkend onderzoek naar behandelbesluiten van artsen met betrekking tot demente verpleeghuispatiënten met pneumonie.

This qualitative interview study in The Netherlands and North Carolina (US) found that physician treatment decisions are influenced by contextual differences in physician training and healthcare delivery in the US and The Netherlands. Dutch physicians treating nursing home residents with dementia and pneumonia assumed active, primary responsibility for treatment decisions while US physicians were more passive and deferential to family preferences, even in cases where they considered the families' wishes inappropriate. Dutch physicians knew their patients well and made treatment decisions based on what they perceived was in the best interest of the patient while US physicians reported limited knowledge of their nursing home patients due to a lack of contact time. Efforts to improve care for patients with poor quality of life who lack decision-making capacity must consider the context of societal values, physician training, and the processes by which physicians negotiate patient and family preferences.

[Treatment of pneumonia in nursing home residents with severe dementia: for residents with poor prognosis, a more reserved approach in The Netherlands and more active treatment in the United States]. / Behandeling van pneumonie bij verpleeghuispatiënten met ernstige dementie: terughoudender beleid in Nederland en actiever beleid in de verenigde Staten naarmate de prognose ongunstiger is.

OBJECTIVE: To describe differences in the treatment of pneumonia and in the association of treatment with prognosis in Dutch and American nursing home patients with late-stage dementia. Design. Prospective studies in The Netherlands and the American state of Missouri. METHOD: In 61 Dutch nursing homes and 36 in Missouri, severely demented patients with pneumonia were included in the periods October 1996-July 1998 and August 1995-September 1998 respectively. Data was collected on their state of health, comorbidity, symptoms of pneumonia and treatment aspects such as antibiotic use, hospital admission and relief of symptoms. Comparisons were made between treatments in both countries and between groups of patients with a similar probability of mortality within 2 weeks. RESULTS: A total of 328 Dutch and 280 American patients were selected. Antibiotics were more frequently withheld in The Netherlands (in 33% of patients) than in Missouri (24%). Differences in antibiotic use were more pronounced in patients with a poor prognosis (56% versus 15%). Dutch patients were more frequently dehydrated but were less likely to receive rehydration therapy than American patients, with a larger difference in patients with a poor prognosis (2% versus 63%). Treatments to relieve symptoms that were provided more often in patients with a poor prognosis (in 20-26%) were: oxygen (both countries), and in The Netherlands also opiates, and hypnotics, sedatives or anxiolytics. CONCLUSION: In The Netherlands, curative treatment was frequently withheld in patients with severe dementia and pneumonia, and even more frequently when the prognosis was poorer. Conversely, treatment in Missouri was more active in patients with a poor prognosis. Despite more frequent palliative treatment goals in The Netherlands, treatments to relieve symptoms were provided infrequently and inconsistent with this approach. These insights may be helpful for decision-making in the treatment of pneumonia in patients with severe dementia.

[Effects of a stepwise approach to behavioural problems in dementia: a cluster randomised controlled trial]. / Stapsgewijze aanpak van probleemgedrag bij dementie.

OBJECTIVE: To investigate whether implementation of a stepwise multidisciplinary intervention ('STA OP!' ['STAND UP!']) is effective in reducing behavioural problems and depressive symptoms in nursing home residents with advanced dementia. DESIGN: Cluster randomised controlled trial. METHOD: We implemented the STA OP! protocol on the intervention units by training the entire multidisciplinary team. This team was trained in all 6 steps of the protocol during five 3-hour sessions. Professionals working on the control unit received training on general technical nursing skills, dementia management and pain, but then without the stepwise component. All elderly care physicians were given additional training in pain management in patients with dementia, based on the guidelines on pain in vulnerable older people. Measurements were taken at baseline, and after 3 and 6 months. We used longitudinal 'multilevel' techniques to correct for clustering of data (e.g. at unit level) for statistical analysis (Dutch Trial Register: NTR1967). RESULTS: A total of 288 residents with dementia were included, from 12 nursing homes (21 units): 148 in the intervention group in 11 units and 140 in the control group in 10 units. On the units where the STA OP! protocol was used there was a significant decline in agitation, neuropsychiatric symptoms and depression compared with the control units at 6 months. Furthermore, use of anti-depressive medication was significantly lower on the intervention units (odds ratio: 0.32; 95% CI: 0.10-0.98). CONCLUSION: This cluster RCT revealed that the stepwise multidisciplinary intervention STA OP! is effective in reducing behavioural problems and use of psycho-pharmaceuticals in nursing home residents with dementia.

European palliative care guidelines: how well do they meet the needs of people with impaired cognition?

OBJECTIVE: Numbers of people dying with cognitive impairment (intellectual disability (ID), dementia or delirium) are increasing. We aimed to examine a range of European national palliative care guidelines to determine if, and how well, pain detection and management for people dying with impaired cognition are covered. METHODS: Questionnaires were sent to 14 country representatives of the European Pain and Impaired Cognition (PAIC) network who identified key national palliative care guidelines. Data was collected on guideline content: inclusion of advice on pain management, whether cognitively impaired populations were mentioned, assessment tools and management strategies recommended. Quality of guideline development was assessed with the Appraisal of Guidelines Research and Evaluation (AGREE) instrument. RESULTS: 11 countries identified palliative care guidelines, 10 of which mentioned pain management in general. Of these, seven mentioned cognitive impairment (3 dementia, 2 ID and 4 delirium). Half of guidelines recommended the use of pain tools for people with cognitive impairment; recommended tools were not all validated for the target populations. Guidelines from the UK, the Netherlands and Finland included most information on pain management and detection in impaired cognition. Guidelines from Iceland, Norway and Spain scored most highly on AGREE rating in terms of developmental quality. CONCLUSIONS: European national palliative care guidelines may not meet the needs of the growing population of people dying with cognitive impairment. New guidelines should consider suggesting the use of observational pain tools for people with cognitive impairment. Better recognition of their needs in palliative care guidelines may drive improvements in care.