J.T. van der Steen

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.

When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings

Background: Little is known about dying peacefully with dementia in long-term care facilities. Dying peacefully may be influenced by characteristics of the palliative care provided and characteristics of the long-term care setting. If so, dying peacefully may serve as a quality indicator for palliative care in dementia. Aim: This study aims to describe whether residents with dementia in Dutch long-term care facilities die peacefully and to assess which characteristics of the resident, the palliative care provided and the facilities are associated with dying peacefully. Design and Setting: We analysed existing data from the Dutch End of Life in Dementia study, collected between January 2007 and July 2010 in 34 long-term care facilities in the Netherlands. We used descriptive statistics and Generalised Estimating Equation models. Results: The sample consisted of 233 residents with dementia. Family members indicated that the resident died peacefully in 56% of cases. This percentage ranged from 17% to 80% across facilities. Residents were more likely to die peacefully if they had an optimistic attitude, if family found that there were enough nurses available and if residents died in facilities with a moderate (versus no) perceived influence of religious affiliation on end-of-life decision-making policies. Conclusions: Only half of the residents with dementia in Dutch long-term care facilities die peacefully, as perceived by relatives. In addition to residents’ optimistic attitude, facility characteristics are associated with dying peacefully, which suggests that ‘the percentage of relatives who indicate that the patient died peacefully’ can function as a quality indicator.

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.

Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation

Introduction Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive. Methods To support families in Canada, a booklet was developed to aid decision making on palliative care issues. For reasons of cost effectiveness and promising effects, we prepared for its implementation in Italy, the Netherlands and Japan. Local teams translated and adapted the booklet to local ethical, legal and medical standards where needed, retaining guidance on palliative care. Using qualitative content analyses, we grouped and compared adaptations to understand culturally sensitive aspects. Results Three themes emerged: (1) relationships among patient, physician and other professionals—the authority of the physician was more explicit in adapted versions; (2) patient rights and family position—adding detail about local regulations; and (3) typology of treatments and decisions. Considerations underlying palliative care decisions were detailed (Dutch and Italian versions), and the Japanese version frequently referred to professional and legal standards, and life-prolongation was a competing goal. Text on artificial feeding or fluids and euthanasia was revised extensively. Conclusions Providing artificial feeding and fluids and discussing euthanasia may be particularly sensitive topics, and guidance on these subjects needs careful consideration of ethical aspects and possible adaptations to local standards and practice. The findings may promote cross-national debate on sensitive, core issues regarding end-of-life care in 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.

Treatments in patients dying with dementia: a cross-cultural perspective

1. Cohen M, Levin SH, Gagin R et al. Elder abuse: Disparities between older people’s disclosure of abuse, evident signs of abuse, and high risk of abuse. J Am Geriatr Soc 2007;55:1224–1230. 2. Dong X. Medical implications of elder abuse and neglect. Clin Geriatr Med 2005;21:293–313. 3. Fulmer T, Paveza G, VandeWeerd C et al. Dyadic vulnerability and risk profiling for elder neglect. Gerontologist 2005;45:525–534. 4. O’Brien J, Thibault J, Turner L et al. Self-neglect: An overview. J Elder Abuse Negl 1999;11:1–19. 5. Longres JF. Self-neglect among the elderly. J Elder Abuse Negl 1995;7: 87–105. 6. Dong X, Gorbien M. Decision-making capacity: The core of self-neglect. J Elder Abuse Negl 2005;17:19–36.

Erratum - Development of a practice guideline for optimal symptom relief for patients with pneumonia and dementia in nursing homes using a Delphi study (vol 30, pg 487, 2015)

randomized, placebo‐controlled, double‐blind, phase 2 trial. Neurology. 2015;84:2161‐2168. 3. Chou RC, Kane M, Ghimire S, Gautam S, Gui J. Treatment for rheumatoid arthritis and risk of Alzheimer’s disease: a nested case‐control analysis. CNS Drugs. 2016;30:1111‐1120. 4. Watson K, Symmons D, Griffiths I, Silman A. The British Society for Rheumatology Biologics Register. Ann Rheum Dis. 2005;64:iv42‐iv43. https://doi.org/10.1136/ard.2005.042499 5. Romero JP, Benito‐Leon J, Mitchell AJ, Trincado R, Bermejo‐Pareja F. Under reporting of dementia deaths on death certificates using data from a population‐based study (NEDICES). J Alzheimers Dis. 2014;39(4):741‐748.