OBJECTIVE: To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries.
DESIGN: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during the previous 3 months were sent a questionnaire.
SETTINGS AND PARTICIPANTS: 761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland.
METHODS: The Family Perception of Physician-Family Communication (FPPFC) scale (ratings from 0 to 3, where 3 means the highest quality) was used to retrospectively assess how the quality of end-of-life communication with treating physicians was perceived by relatives. We applied multilevel linear and logistic regression models to assess differences between countries and LTCF types.
RESULTS: The FPPFC score was the lowest in Finland (1.4 ± 0.8) and the highest in Italy (2.2 ± 0.7). In LTCFs served by general practitioners, the FPPFC score differed between countries, but did not in LTCFs with on-site physicians. Most relatives reported that they were well informed about a resident's general condition (from 50.8% in Finland to 90.6% in Italy) and felt listened to (from 53.1% in Finland to 84.9% in Italy) and understood by the physician (from 56.7% in Finland to 85.8% in Italy). In most countries, relatives assessed the worst communication as being about the resident's wishes for medical treatment at the end of life, with the lowest rate of satisfied relatives in Finland (37.6%).
CONCLUSION: The relatives' perception of the quality of end-of-life communication with physicians differs between countries. However, in all countries, physicians' communication needs to be improved, especially regarding resident's wishes for medical care at the end of life.
IMPLICATIONS: Training in end-of-life communication to physicians providing care for LTCF residents is recommended.
Objectives: Many older adults in long-term care (LTC) experience acute health crises but are at high risk of transfer distress and in-hospital morbidity and mortality. Residents often complete advance directives (ADs) regarding future care wishes, including directives for hospital transfers. This study aims to estimate the prevalence of, and adherence to, “no transfer to hospital” ADs in LTC, and to explore the circumstances leading to transfers against previously expressed directives.
Design: We conducted a mixed methods study in 10 nursing homes in Nova Scotia, Canada. A total of 748 resident charts and Emergency Health Services (EHS) database notes were reviewed from 3 time periods spanning implementation of a new primary care model, Care by Design (CBD).
Measures: ADs were divided into those requesting transfer to hospital vs on-site management only, which were then analyzed in relation to actual hospital transfers. Reasons for EHS calls, management, and qualitative data were derived from the EHS database. Resident variables were obtained from LTC charts. Measures were compared between time periods.
Results: ADs were complete in 92.4% of charts. Paramedics were called for 80.5% of residents, and 73.6% were transferred to hospital, 51.3% of whom had explicit ADs to the contrary. The majority of those were transferred for fall-related injuries, followed by medical illness. Unclear care plans, symptom control, and perceived need for investigations and procedures all influenced transfer decisions.
Conclusions/Implications: The use of “no transfer to hospital” directives did not appear to impact the number of residents being transferred to acute care. Half of those transferred to hospital had explicit ADs to the contrary, largely driven by fall-related injury. The high incidence of injury-related transfers highlights an important gap in advance care planning. Clarifying transfer preferences for injury management in advance directives may lead to better end-of-life experiences for residents and improve effective resource utilization.
AIMS AND OBJECTIVES: The aim of this study was to explore the experiences and processes of advance care planning (ACP) discussions in older residents of a long-term care institution.
BACKGROUND: ACP can facilitate discussion about end-of-life care and help to identify individual's views, wishes and beliefs about dying at a time when they have the cognitive capacity to reflect on and/or make such decisions.
DESIGN: A qualitative study was conducted.
METHODS: Twenty-eight older adults in a long-term care institution participated in person-to-person interviews using an ACP booklet, which included topics such as life review, healthy habits and behaviors, and end-of-life care issues and information. The discussions were recorded and thematic analysis was used to analyze the qualitative data. The Standards for Reporting Qualitative Research (SRQR) checklist was followed.
RESULTS: Three themes were identified. First, participants identified that ACP could help to ensure that they achieved their view of a 'good death'. Second, the process of ACP bought up difficult decisions that many participants expressed uncertainty about making. Third, participants' ability and willingness to plan for end of life were shaped by considerations about their family members' needs, views and potential role as their future carer.
CONCLUSIONS: The ACP process involved not only personal ideas about good death but also families' concerns. Uncertainty and lack of information created difficult barriers Relevance to clinical practice: Healthcare professionals could address the concept of good death, deliver information for their concerns, and promote communication with family members. This article is protected by copyright. All rights reserved.
Although providing direct care to residents with dementia, long-term care (LTC) home staff of registered nurses', registered practical nurses', and personal support workers' involvement in end-of-life decision-making is rarely acknowledged. The purpose of this study was to examine barriers and facilitators to LTC home staff involvement in end-of-life decision-making for people with advanced dementia. We report on the barriers to staff involvement in decision-making. Using an interpretive descriptive design, four major barriers to staff involvement in decision-making were identified: (a) the predominance of a biomedical model of care; (b) a varied understanding of a palliative approach; (c) challenging relationships with families; and (d) a discomfort with discussing death. Findings suggest that the predominant biomedical model in LTC homes, while important, must be imbued with a philosophy that emphasizes relationships among residents with dementia, family and staff.
Since the early 1990s, long-term care policies have undergone significant transformations across OECD countries. In some countries, these changes have responded to the introduction of major policy reforms while in others, significant transformations have come about through the accumulation of incremental policy changes. This book brings together evidence from over 12 years of care reforms to examine changes in long-term care systems occurring in OECD countries. It discusses and compares key changes in national policies and examines the main successes and failures of recent reforms. Finally, it suggests possible policy strategies for the future in the sector.
Origine : BDSP. Notice produite par IRDES qR0xBJl8. Diffusion soumise à autorisation
This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
Origine : BDSP. Notice produite par IRDES R0x8nEsH. Diffusion soumise à autorisation
Le présent article reprend les principales conclusions d'une étude visant à dresser un premier bilan de l'accompagnement bénévole en centre de soins de longue durée et à en faire l'évaluation. Il est l'occasion de revenir sur le rôle et la contribution des bénévoles dans l'accompagnement de fin de vie et de s'interroger sur la place des soins de fin de vie dans les établissements de soins de longue durée - les conditions particulières dans lesquelles l'accompagnement se fait, les difficultés rencontrées et les réponses qui peuvent y être apportées.
The purpose of this study was to analyse the consistency and extent of palliative content across high-level guiding documents related to the care of persons residing in Canadian long-term care homes. A systematic search was conducted examining documents at the national level and across five provinces (Alberta, Ontario, Saskatchewan, Manitoba, and Quebec). Twenty-five documents were selected based on inclusion criteria from 273 documents identified in the systematic search. The majority of these documents were created nationally (48%) or in Ontario (28%). Documents varied in palliative topics discussed, and long-term care was discussed minimally. A minimal number of palliative care guiding documents were found. Long-term care specific documents were absent, and all documents lacked consistency on palliative topics. It is imperative that palliative principles are present and consistent in high-level documents in order to improve the quality of life and care for long-term care residents across Canada.
The average expected lifespan in Canadian long-term care (LTC) homes is now less than two years post-admission, making LTC a palliative care setting. As little is known about the readiness of LTC staff in Canada to embrace a palliative care mandate, the main objective of this study was to assess qualities relevant to palliative care, including personal emotional wellbeing, palliative care self-efficacy and person-centred practices (e.g. knowing the person, comfort care). A convenience sample of 228 professional and non-professional staff (e.g. nurses and nursing assistants) across four Canadian LTC homes participated in a survey. Burnout, secondary traumatic stress and poor job satisfaction were well below accepted thresholds, e.g. burnout: mean = 20.49 (standard deviation (SD) = 5.39) for professionals; mean = 22.09 (SD = 4.98) for non-professionals; cut score = 42. Furthermore, only 0–1 per cent of each group showed a score above cut-off for any of these variables. Reported self-efficacy was moderate, e.g. efficacy in delivery: mean = 18.63 (SD = 6.29) for professionals; mean = 15.33 (SD = 7.52) for non-professionals; maximum = 32. The same was true of self-reported person-centred care, e.g. knowing the person; mean = 22.05 (SD = 6.55) for professionals; mean = 22.91 (SD = 6.16) for non-professionals; maximum = 35. t-Tests showed that non-professional staff reported relatively higher levels of burnout, while professional staff reported greater job satisfaction and self-efficacy (p < 0.05). There was no difference in secondary traumatic stress or person-centred care (p > 0.05). Overall, these results suggest that the emotional wellbeing of the Canadian LTC workforce is unlikely to impede effective palliative care. However, palliative care self-efficacy and person-centred care can be further cultivated in this context.
Successful advance care planning relies heavily on effective communication between the elderly and their families, care managers, and social workers. However, care managers and social workers are often not adequately prepared to conduct such discussion. The aim of the present study was to identify the specific challenges facing Japanese care managers and social workers when involvement in advance care planning. Two focus group discussions were held between August and November 2017, involving eleven care managers and three social workers employed at two long-term care facilities actively pursuing advance care planning initiatives. Four main themes were identified, through content analysis, as barriers and facilitators: client readiness, communication, variation-rich client individuality, and difficult-to-explain end-of-life options. This study revealed the importance of building rapport with the residents and their families in order to assess their readiness to discuss care options and preferences. Obstacles included lack of medical knowledge of care managers and social workers. Study findings suggested that a multi-disciplinary team, facilitated by care managers and social workers, was fundamental to achieving the goals of advance care planning.
Background: Nursing staff caring for people with dementia have a crucial role in addressing palliative care needs and identifying changes in health status. Palliative care for people with dementia is complex and requires specific competences. A lack thereof may lead to unnecessary hospitalizations, poor symptom control and undesirable burdensome treatments. Understanding what nursing staff need to provide palliative care specifically for people with dementia facilitates the development of tailored and feasible interventions.
Objective: To investigate what is known from the literature regarding the needs in providing palliative dementia care as perceived by nursing staff working in home care or in long-term care facilities and to establish an integrated conceptualization of these needs.
Design: A scoping review method combined with thematic analysis methods.
Data sources: Bibliographic databases of PubMed, CINAHL and PsycINFO were searched for primary research studies.
Review methods: Guidelines from the Joanna Briggs Institute were utilized as a framework for setting up and conducting the scoping review. Eligible articles considered nursing staff’s perceived needs in providing palliative dementia care at home or in long-term care facilities. Two authors assessed eligibility based on title and abstract, assessed full texts for selected records and assessed the quality of included articles. Thematic analysis methods were used to identify themes from relevant study findings, which were integrated to form a conceptualization.
Results: Of the 15 articles that were included, most used qualitative methods (N = 13) and were conducted in long-term care facilities (N = 14). Themes reflecting nursing staff needs on a direct care-level concern recognizing and addressing palliative care needs (such as comfort), verbal and non-verbal communication, challenging behaviour and familiarity: knowing and understanding the person with dementia. On more distant levels, themes involve a need for interdisciplinary collaboration, training and education and organizational support.
Conclusion: A comprehensive overview of nursing staff perspectives on providing palliative care for people with dementia demonstrates interdependent needs related to recognizing and addressing palliative care needs, communicating, handling challenging behaviour and building close care relationships. These care-related needs occur within workplace and organizational contexts. Organizational support is considered insufficient. Yet, healthcare organizations have the authority to fulfil a facilitating role in implementing nursing interventions tailored to nursing staff needs. Areas for further research include home care settings, the psychosocial and spiritual domains of palliative dementia care, advance care planning and family involvement.
The literature on ethics in health care that explores the moral concerns of care providers typically focuses on registered health professionals and ethical dilemmas in acute and primary care. Far less attention has been paid to the long-term care (LTC) environment and non-registered, direct care workers. To address this gap, this research examined the moral concerns of personal support workers (PSWs) who provide direct care to residents. Data were collected during a 5-year participatory action research project to formalize palliative care programs in LTC homes. Eleven focus groups explored PSWs’ experiences providing palliative care in LTC homes, their challenges and learning needs (n = 45). In-depth secondary analysis of these focus groups found that PSWs experienced moral dilemmas. Two main moral dilemmas were ensuring that residents don’t die alone; and providing the appropriate care based on residents’ wishes. Their organizational constraints coalesced around policies, hierarchy, time, and balancing residents’ needs.
BACKGROUND: End-of-life conversations are rarely initiated by care staff in long-term care facilities. A possible explanation is care staff's lack of self-efficacy in such conversations. Research into the determinants of self-efficacy for nurses and care assistants in end-of-life communication is scarce and self-efficacy might differ between care staff of mental health facilities, nursing homes, and care homes. This study aimed to explore differences between care staff in mental health facilities, nursing homes, and care homes with regard to knowledge about palliative care, time pressure, and self-efficacy in end-of-life communication, as well as aiming to identify determinants of high self-efficacy in end-of-life communication.
METHODS: Two cross-sectional Dutch studies, one in mental health facilities and one in nursing and care homes (PACE study). Nurses and care assistants were invited to complete a questionnaire in 2015. Multivariable logistic regression analyses were performed to identify determinants of high self-efficacy.
RESULTS: Five hundred forty one nurses and care assistants completed a survey; 137 worked in mental health facilities, 172 in nursing homes, and 232 in care homes. Care staff at mental health facilities were the most knowledgeable about the World Health Organization’s definition of palliative care: 76% answered 4–5 out of 5 items correctly compared to 38% of nursing home staff and 40% of care home staff (p < 0.001). Around 60% of care staff in all settings experienced time pressure. Care staff had high self-efficacy regarding end-of-life communication with patients: the overall mean score across all facilities was 5.47 out of 7 (standard deviation 1.25). Determinants of high self-efficacy were working in a mental health facility, age > 36, female, with formal palliative care training, and knowledge of the palliative care definition.
CONCLUSION: Mental healthcare staff knew more about palliative care and had higher self-efficacy in end-of-life communication compared to nursing and care home staff. Educating care staff about providing palliative care and training them in it might improve end-of-life communication in these facilities.
Long-term care (LTC) planning is important in helping the older people tackle their future needs better. The needs for LTC services represent generational characteristics as they may be different between the current and upcoming cohorts of older adults. However, very few studies have examined the cohort differences in terms of their expected utilisation of LTC services, while understanding the patterns is crucial in helping policy makers prepare for the development of LTC services. This study fills the research gap by examining the plans and expectations for LTC services of 1,613 middle-aged and older persons in Hong Kong with data collected from a telephone survey. By applying the Andersen Model to examine LTC expectations, this study analyses the LTC needs and plans of the middle-aged and older cohorts of Hong Kong adults, as well as their associated factors, with a multiple logistic regression method. Both gender and birth cohort were examined individually and in combination. Birth cohort and gender have been found to exert an impact on all aspects of LTC needs and planning to varying degrees. The findings are interpreted and contrasted with those of a key study based in the West, with reference to the contextual characteristics of Hong Kong. This study furthers the scholarly understanding on LTC needs and planning and their cohort effect, and draws evidence-based recommendations for LTC development in Hong Kong, a rapidly ageing East Asian society.
The impact that providing care to ageing parents has on adult children's lives may depend on the long-term care (LTC) context. A common approach to test this is to compare whether the impact of care-giving varies between countries with different LTC coverage. However, this approach leaves considerable room for omitted variable bias. We use individual fixed-effects analyses to reduce bias in the estimates of the effects of informal care-giving on quality of life, and combine this with a difference-in-difference approach to reduce bias in the estimated moderating impact of LTC coverage on these effects. We draw on longitudinal data for Sweden and Denmark from the Survey of Health, Ageing and Retirement in Europe (SHARE) collected between 2004 and 2015. Both countries traditionally had generous LTC coverage, but cutbacks were implemented at the end of the 20th century in Sweden and more recently in Denmark. We use this country difference in the timing of the cutbacks to shed light on effects of LTC coverage on the impact care-giving has on quality of life. Our analyses show that care-giving was more detrimental for quality of life in Sweden than in Denmark, and this difference weakened significantly when LTC coverage was reduced in Denmark, but not in Sweden. This suggests that LTC coverage shapes the impact of care-giving on quality of life.
OBJECTIVES: This article reports findings on the usability and staff use of 5 condition- specific pamphlets of high prevalence in long-term care (LTC): dementia, heart failure, chronic obstructive pulmonary disease, renal failure, and frailty. The pamphlets were created in response to residents', families', and staff's recommendations for activating early reflections and communication about end-of-life care.
DESIGN: A mixed-method (qualitative and quantitative) survey design was used. Step 1 collected survey data on the usability of the pamphlets. Step 2 collected survey data on pamphlet use.
SETTINGS AND PARTICIPANTS: Two nurses with specialized palliative care training, 2 resident/family representatives, 10 condition-specific specialists, and 33 LTC palliative leads reviewed the pamphlets for usability prior to distribution. A total of 178 LTC home staff in 4 participating LTC homes reported on pamphlet use.
MEASURES: Specialists and resident/family representatives were asked to provide open comments and LTC home palliative leads were asked to complete a survey on the accuracy, readability, and relevance of the pamphlets. After 6 months of distribution, all staff in participating LTC homes were asked to complete a survey on pamphlet use, usefulness, and comfort with distribution.
RESULTS: The pamphlets were reportedly accurate, relevant, and easy to understand. Following 6 months of availability, most staff in LTC had read the pamphlets, found the information useful, and planned to share them. However, half of the staff questioned their role in pamphlet distribution and most had not distributed them. Regulated staff (ie, staff affiliated with a regulated profession) expressed more comfort sharing the pamphlets than care aides and support staff.
CONCLUSIONS/IMPLICATIONS: Condition-specific pamphlets appear to hold promise in providing residents and families with relevant information that may activate early reflections and conversations about end-of-life care. However, structured implementation strategies, training, and discussions are required to improve staff comfort with distribution and explore roles in distribution and follow-up.
Background and Objectives: To examine the relationship between hospital diagnoses associated with hospital transfers of long stay nursing home residents, ratings of avoidability of transfer, and RN-identified quality improvement opportunities.
Research Design and Methods: Prospective clinical demonstration project, named OPTIMISTIC, with trained RNs embedded in nursing homes that performed root cause analyses for 1,931 transfers to the hospital between November 2014 and July 2016. OPTIMISTIC RNs also rated whether transfers were avoidable, identified quality improvement opportunities, and recorded hospital diagnoses. Resident characteristics were obtained from Minimum Data Set assessments. Relationships between six hospital diagnoses commonly considered "potentially avoidable" and OPTIMISTIC RN root cause analysis findings were examined. Facilities were participating in the OPTIMISTIC demonstration project designed to reduce hospital transfers during the study period.
Results: Twenty-five percent of acute transfers associated with six common diagnoses were considered definitely or probably avoidable by project RNs versus 22% of transfers associated with other diagnoses. The most common quality improvement opportunity identified for transfers rated as avoidable was that the condition could have been managed safely if appropriate resources were available, a factor cited in 45% of transfers associated with any of the six diagnoses. Problems with communication among stakeholders were the most commonly noted area for improvement (48%) for transfers associated with other diagnoses. Many other areas for quality improvement were noted, including earlier detection of change in status and the need for understanding patient preferences or a palliative care plan.
Discussion and Implications: Although some nursing home transfers may later be deemed potentially avoidable based on post-transfer hospital diagnosis from Medicare claims data, OPTIMISTIC nurses caring for these residents at time of transfer categorized the majority of these transfers as unavoidable irrespective of the hospital diagnosis. Multiple quality improvement opportunities were identified associated with these hospital transfers, whether the transfer was considered potentially avoidable or unavoidable.
This article deals with ethical issues intrinsic to long-term care, emphasizing those that relate to the daily practice of the physician. First, some general issues are considered, followed by a brief discussion of nursing home care and home care, the two most common service systems that apply to patients receiving long-term care. For the most part, this article focuses on the ethical issues involved for patients who live with such care rather than those concerning the death of long-term care clients. The author argues that the balance needs to shift to more attention to these everyday matters.
BACKGROUND: To promote better care at the end stage of life in long-term care facilities, a culturally appropriate tool for identifying residents at the end of life is crucial.
OBJECTIVE: This study aimed to develop and validate a prognostic tool, the increased risk of death (IRD) scale, based on the minimum data set (MDS).
DESIGN: A retrospective study using data between 2005 and 2013 from six nursing homes in Hong Kong.
SETTING/SUBJECTS: A total of 2380 individuals were randomly divided into two equal-sized subsamples: Sample 1 was used for the development of the IRD scale and Sample 2 for validation.
MEASUREMENTS: The measures were MDS 2.0 items and mortality data from the discharge tracking forms. The nine items in the IRD scale (decline in cognitive status, decline in activities of daily living, cancer, renal failure, congestive heart failure, emphysema/chronic obstructive pulmonary disease, edema, shortness of breath, and loss of weight), were selected based on bivariate Cox proportional hazards regression.
RESULTS: The IRD scale was a strong predictor of mortality in both Sample 1 (HRsample1 = 1.50, 95% confidence interval [CI]: 1.37–1.65) and Sample 2 (HRsample2 = 1.31, 1.19–1.43), after adjusting for covariates. Hazard ratios (HRs) for residents who had an IRD score of 3 or above for Sample 1 and Sample 2 were 3.32 (2.12–5.21) and 2.00 (1.30–3.09), respectively.
CONCLUSIONS: The IRD scale is a promising tool for identifying nursing home residents at increased risk of death. We recommend the tool to be incorporated into the care protocol of long-term care facilities in Hong Kong.