Do physicians discuss end-of-life decisions with family members? A mortality follow-back study.

OBJECTIVE: Deaths from chronic illness are often preceded by a potentially life-shortening end-of-life decision (ELD). Involving family in these ELDs may have psychosocial benefits for them and the dying person. This study aims to examine how often ELDs are discussed with relatives of the dying person and which characteristics determine their involvement in those ELDs. METHODS: A questionnaire survey was conducted in 2013 among physicians attending a large, stratified and representative sample of deaths (n = 6188) in Flanders. RESULTS: In 72.3% of ELDs preceding death, family of the dying person were involved. Discussion of an ELD with family members was more likely when the decision was also discussed with the dying person, the ELD was made with the explicit intention to shorten life, specialized palliative care was provided or death occurred in an ICU. CONCLUSIONS: Involving family in end-of-life decision making appears to be related to the type of formal care services involved, communication with the dying person and the motives behind the decision. PRACTICE IMPLICATIONS: Our findings suggest a need to further expand a palliative care approach with a focus on both the dying person and their family within and across a variety of health care services.

Does using the interRAI Palliative Care instrument reduce the needs and symptoms of nursing home residents receiving palliative care?

OBJECTIVE: This study aimed to evaluate whether using the interRAI Palliative Care instrument (the interRAI PC) in nursing homes is associated with reduced needs and symptoms in residents nearing the end of their lives. METHOD: A quasi-experimental pretest-posttest study using the Palliative care Outcome Scale (POS) was conducted to compare the needs and symptoms of residents nearing the end of their lives in the control and intervention nursing homes. Care professionals at the intervention nursing homes filled out the interRAI PC over the course of a year for all residents aged 65 years and older who were nearing the end of their lives. This intervention was not implemented in the control nursing homes. RESULTS: At baseline, POS scores in the intervention nursing homes were lower (more favorable) than in the control nursing homes on the items "pain", "other symptoms", "family anxiety", and the total POS score. Posttest POS scores for "wasted time" were higher (less favorable) than pretest scores in the intervention nursing homes. In the intervention nursing homes where care professionals did not have prior experience with the interRAI Long-Term Care Facilities (LTCF) assessment instrument (n = 8/15), total POS scores were lower (more favorable) at posttest. SIGNIFICANCE OF RESULTS: One year after introducing the interRAI PC, no reduction in residents' needs and symptoms were detected in the intervention nursing homes. However, reductions in needs and symptoms were found in the subgroup of intervention nursing homes without prior experience with the interRAI LTCF instrument. This may suggest that the use of an interRAI instrument other than the interRAI PC specifically can improve care. Future research should aim at replicating this research with a long-term design in order to evaluate the effect of integrating the use of the interRAI PC in the day-to-day practices at nursing homes.

Palliative care needs and symptoms of nursing home residents with and without dementia: A cross-sectional study.

AIM: The aims of the present study were: (i) to describe palliative care needs and symptoms of older adults anticipated to be in the last year of their life in Flemish nursing homes (Belgium); and (ii) to evaluate whether these needs differ between residents with and without dementia. METHODS: A cross-sectional study was carried out in 2014. Nurses and nursing assistants in 15 Flemish nursing homes (Belgium) completed the Palliative care Outcome Scale for 109 residents with palliative care needs. RESULTS: Pain, as well as other physical symptoms, was present in more than half of the nursing home residents according to caregivers. The most prominent needs occurred on psychosocial and spiritual domains, such as patient anxiety, support, finding life worth living and self-worth. Caregivers reported that residents with dementia experienced fewer physical symptoms apart from pain than did residents without dementia (coeffficient -0.73, 95% CI -1.18-0.84; P = 0.001. Furthermore, residents with dementia received higher scores on the items "support" (coefficient 0.75; 95% CI 0.15-1.34, P = 0.015), "life worthwhile" (coeffficient 0.58; 95% CI 0.090-1.07, P = 0.020) and "self-worth" (coefficient 0.58, 95% CI 0.13-1.03, P = 0.012). CONCLUSIONS: According to caregivers, residents with dementia experienced fewer other physical symptoms (e.g. nausea) than residents without dementia. This, however, might be a result of an underdetection of other symptoms in nursing home residents with dementia. Furthermore, most challenges in nursing homes lie within the spiritual and psychosocial domains of palliative care, particularly in people with dementia. These aspects should be integrated in the professional education of caregivers. Assessment tools might be of help to improve the identification of needs and symptoms. Geriatr Gerontol Int 2017; 17: 1501-1507.

Usefulness, feasibility and face validity of the interRAI Palliative Care instrument according to care professionals in nursing homes: A qualitative study.

BACKGROUND: Nursing homes are important locations for palliative care. High quality palliative care requires an evaluation of the different care needs of the nursing home residents. The interRAI Palliative Care instrument is a comprehensive assessment that evaluates the needs and preferences of adults receiving palliative care. OBJECTIVES: This study aims to evaluate the usefulness, feasibility and face validity of the interRAI Palliative Care instrument. DESIGN: A qualitative study was conducted, based on the abductive reasoning approach. SETTING: Fifteen nursing homes in Flanders (Belgium). PARTICIPANTS: Calls for participation were sent out by four umbrella organizations of Flemish nursing homes (Belgium) and at a national conference for nursing home staff. Nineteen care professionals (nurses, certified nursing assistants, psychologists, physiotherapists, quality coordinators and directors) of 15 nursing homes voluntarily agreed to participate in the study. METHODS: During one year, care professionals evaluated the needs and preferences of all nursing home residents receiving palliative care by means of the interRAI Palliative Care instrument. Data on the usefulness, feasibility and face validity of the interRAI Palliative Care instrument were derived from notes, semi-structured interviews and focus groups with participating care professionals and were thematically analyzed and synthesized. Data were gathered between December 2013 and March 2015. RESULTS: In general, the interRAI Palliative Care (interRAI PC instrument) is a useful instrument according to care professionals in nursing homes. However, care professionals made a series of recommendations in order to optimize the usefulness of the instrument. The interRAI PC instrument is not always feasible to complete because of organizational reasons. Furthermore, the face validity of the instrument could be improved since certain items are incomplete, lacking, redundant or too complex. CONCLUSIONS: Findings highlight the importance of adapting the content of the interRAI Palliative Care instrument for use in nursing homes. Furthermore, the use of the instrument should be integrated in the organization of daily care routines in the nursing homes. Tackling the critical remarks of care professionals will help to optimize the interRAI Palliative Care instrument and hence support palliative care of high quality in nursing homes.

Agitation in dementia and the role of spatial and sensory interventions: experiences of professional and family caregivers.

AIM: There is a growing interest in environmental interventions to complement the psychosocial approaches to cope with agitation in dementia. The aim of this study was to present this evidence from literature and research to care practitioners and family carers in order to gather their reflections. In this way, we can identify experienced gaps in care practice and define needs for further research. METHOD: A framework with seven types of environmental interventions for agitation in dementia was developed through literature review, referring to the impact of light, smell, noise, temperature, nature, colour and spatial configuration. This framework guided three expert panels, respectively, with family caregivers of persons with dementia (N = 5), professional home care workers (N = 12) and professional caregivers working in nursing homes (N = 10). RESULTS: All caregivers stressed the impact of agitation on their quality of life and on the quality of life of the person with dementia. Most caregivers were familiar with the impact of daylight, natural elements and domestic smells. Caregivers were unfamiliar with the specific effects of bright light therapy and were interested in more research on the effectiveness of light, temperature and spatial configuration. They stressed the individuality of agitation in dementia. CONCLUSION: Caregivers already use sensory and spatial interventions to manage agitation, and they are interested in knowing more about feasible effective interventions. Caregivers need to be informed on the possible benefits of sensory environmental factors on coping with agitation. To this end, it is very useful to take the experiences of caregivers into account.

Study protocol for 'we DECide': implementation of advance care planning for nursing home residents with dementia.

AIM: To evaluate the effects of 'we DECide', an educational intervention for nursing home staff on shared decision-making in the context of advance care planning for residents with dementia. BACKGROUND: Advance care planning (preparing care choices for when persons no longer have decision-making capacity) is of utmost importance for nursing home residents with dementia, but is mostly not realized for this group. Advance care planning consists of discussing care choices and making decisions and corresponds to shared decision-making (the involvement of persons and their families in care and treatment decisions). DESIGN: This quasi-experimental pre-test-post-test study is conducted in 19 nursing homes (Belgium). Participants are nursing home staff. METHODS: 'We DECide' focuses on three crucial moments for discussing advance care planning: the time of admission, crisis situations and everyday conversations. The 'ACP-audit' assesses participants' views on the organization of advance care planning (organizational level), the 'OPTION scale' evaluates the degree of shared decision-making in individual conversations (clinical level) and the 'IFC-SDM Questionnaire' assesses participants' views on Importance, Frequency and Competence of realizing shared decision-making (clinical level). (Project funded: July 2010). DISCUSSION: The study hypothesis is that 'we DECide' results in a higher realization of shared decision-making in individual conversations on advance care planning. A better implementation of advance care planning will lead to a higher quality of end-of-life care and more person-centred care. We believe our study will be of interest to researchers and to professional nursing home caregivers and policy-makers.

Informed palliative care in nursing homes through the interRAI Palliative Care instrument: a study protocol based on the Medical Research Council framework.

BACKGROUND: Nursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC. METHODS: This study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP 'Mood' of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes. DISCUSSION: This is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology based on the MRC framework. This approach improves the study design and implementation and will contribute to a higher generalizability of results. The final result will be a psychometrically evaluated CGA for nursing home residents receiving palliative care. TRIAL REGISTRATION: ClinicalTrials.gov NCT02281032. Registered October 30th, 2014.

A comparative analysis of comprehensive geriatric assessments for nursing home residents receiving palliative care: a systematic review.

BACKGROUND/OBJECTIVES: Nursing homes become important locations for palliative care. By means of comprehensive geriatric assessments (CGAs), an evaluation can be made of the different palliative care needs of nursing home residents. This review aims to identify all CGAs that can be used to assess palliative care needs in long-term care settings and that have been validated for nursing home residents receiving palliative care. The CGAs are evaluated in terms of psychometric properties and content comprehensiveness. DESIGN: A systematic literature search in electronic databases MEDLINE, Web of Science, EMBASE, Cochrane, CINAHL, and PsycInfo was conducted for the years 1990 to 2012. SETTING: Nursing homes. PARTICIPANTS: Nursing home residents with palliative care needs. MEASUREMENTS: Psychometric data on validity and reliability were extracted from the articles. The content comprehensiveness of the identified CGAs was analyzed, using the 13 domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. RESULTS: A total of 1368 articles were identified. Seven studies met our inclusion criteria, describing 5 different CGAs that have been validated for nursing home residents with palliative care needs. All CGAs demonstrate moderate to high psychometric properties. The interRAI Palliative Care instrument (interRAI PC) covers all domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. The McMaster Quality of Life Scale covers nine domains. All other CGAs cover seven domains or fewer. CONCLUSIONS: The interRAI PC and the McMaster Quality of Life Scale are considered to be the most comprehensive CGAs to evaluate the needs and preferences of nursing home residents receiving palliative care. Future research should aim to examine the effectiveness of the identified CGAs and to further validate the CGAs for nursing home residents with palliative care needs.

Family caregiver perspectives on social relations of elderly residents with dementia in small-scale versus traditional long-term care settings in the Netherlands and Belgium.

AIMS AND OBJECTIVES: To provide insight into family caregiver perspectives on social relations within the 'caregiving triangle' between family caregiver, professional caregiver and elderly resident with dementia. Results were compared between traditional versus small-scale long-term care settings in the Netherlands and Belgium. BACKGROUND: Residential dementia care is shifting towards a more holistic and person-centred approach. Until now, little is known about family caregiver perspectives. DESIGN: A quasi-experimental longitudinal design. METHODS: This study was part of a larger research project focusing on the quality of life of residents with dementia in traditional and small-scale settings (n = 179). This study focused on family caregivers related to these residents (n = 64). They filled in a questionnaire containing 25 items (baseline and after 12 months) related to their perspectives on the interaction within the 'caregiving triangle'. Analyses were performed using mixed models and logistic regression. RESULTS: Compared to traditional settings, family caregivers of relatives with dementia living in small-scale settings had more contact with the professional caregivers, were more satisfied with this contact and felt that staff paid more attention to their feelings as family members. They also reported that staff showed better listening skills towards the residents. Furthermore, compared to those in Belgium, family caregivers in the Netherlands perceived staff to be less hurried and more accepting of help from family and felt that staff more often takes the resident seriously. CONCLUSION: In the move towards more person-centred care for residents with dementia, this study finds preliminary evidence for the importance of integrating the family perspective. RELEVANCE TO CLINICAL PRACTICE: Gaining more insight into the perspectives of family caregivers on the social relations within the 'caregiving triangle' may provide knowledge about the importance of the social system surrounding elderly residents with dementia and can provide pointers for future research.

The quality of the caregiving relationship in informal care for older adults with dementia and chronic psychiatric patients.

The present study focuses on the dyadic relationship between a family carer and a patient. Besides clarifying the quality of the caregiving relationship in two populations of chronically ill patients, this investigation examines whether patient characteristics, carer characteristics and network characteristics are predictive of relationship quality in dementia caregiving. Partners, children or children-in-law caring for a relative suffering from dementia (N = 144) and partners or parents of persons suffering from chronic mental illness (N = 77) were interviewed with a semi-structured questionnaire. The measurement of relationship quality is based on the literature of Expressed Emotion and covers two dimensions: the level of criticism and the level of warmth. In general, the relationship between a carer and his or her chronically ill relative was marked by a low level of conflict or criticism and a high degree of warmth. The main predictors of a poorer relationship quality were disturbances in the patient's behaviour and the carer's perception of these disturbances. Our results suggest that, rather than limiting investigations to the burden experienced by the family carer, future research and interventions on chronically ill patients should focus on the quality of the carer-patient relationship and its determinants.