Resident Death Research Articles

Are Your Quality Assessment and Assurance Documents Safe From Prying Eyes?

Are Your Quality Assessment and Assurance Documents Safe From Prying Eyes?

The relationship between caregivers’ perceptions of end-of-life care in long-term care and a good resident death

Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers' perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers' perceptions of a good resident death. This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death. Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers' perceptions of a good resident death. The findings of this study suggest that the critical role staff in LTC play in supporting caregivers' perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers' perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers' perceptions that residents were at peace when they died.

FACTORS ASSOCIATED WITH MORTALITY AMONG LONG-TERM CARE RESIDENTS TRANSITIONING TO AND FROM EMERGENCY DEPARTMENTS

Studies examining risk of death during acute care transitions have highlighted potential predictors of death during transition. However, they have not closely examined the relationships and directional effects of organizational context, care processes, resident demographics and health conditions on death during transition. By employing structural equation modeling, we aimed to 1) identify predictive factors for residents who died during transitions from long term care (LTC) to emergency departments (EDs) and back; 2) examine relationships between identified organizational, process and resident factors with resident death during these transitions; and 3) identify areas for further investigation and improvement in practice. We tracked every resident transfer from 38 participating LTC facilities to two included EDs in two Western Canadian provinces from July 2011 to July 2012. Overall, 524 residents were involved in 637 transfers of whom 63 residents (12%) died during the transition. Sustained dyspnea (in both LTC and the ED), sustained change in level of consciousness (LOC) and severity measured by triage score were direct and significant predictors of resident death during transition. The model fit the data, (x2 = 83.77, df = 64, p = 0.049) and explained 15% variance in resident death. Dyspnea and change in LOC in both LTC and ED needs to be recognized regardless of primary reason for transfer. More research is needed to determine the specific influences of LTC ownership models, family involvement in decision-making, LTC staff decision-making on resident death during transition, and interventions to prevent pre-death transfers.

Competing goods and fallacies of care: Moral deliberations at the end of life in the nursing home

While care is often either implicitly or explicitly conceived in terms of “doing good,” the morality of care is more complex than this association would suggest. Nursing home care, in particular, is both characterized by institutional demands for regulation and standardization, and the subjective practices of care workers. These can represent different notions of good care. Based on ethnographic fieldwork among people with dementia, family members and professional caregivers in nursing homes in the Netherlands, I present a case of a resident's sudden death, which revealed a fallacy of care. A fallacy of care refers to an uncritical approach to the “good” in care that overlooks its potentially harmful outcomes. I show that recognizing such fallacies is not only a matter of recognizing the “bad” that may result from “good” care, but of the friction between multiple “goods.” In this case, protocols and care practices advocate different notions of the good that coexist, compete, and exclude one another, producing moral distress and forming hierarchical, if contested relations.

État civil: Michelle Grangaud on Language Unrest

While Oulipian writing has generally been regarded as divorced from the militant causes espoused by twentieth-century avant-gardes, Michelle Grangaud’s work foments with politically conscious forms. One of the few women members of the group, she made anagrammatic composition the fulcrum of her procedural poetics, a close-up scrutiny of embodied and discursive phenomena. État Civil: Inventaires (1998) is exemplary for prying open the discourse of power (the registry of vital statistics), reclaiming its language, and releasing the potentiality of the inventory (an Oulipian topos amply explored by Georges Perec) as form. Taking hold of the categories used to index each resident (birth, marital status, and death), Grangaud’s text deploys a repertoire of tactics such as the anagram, serial disposition, and disfluency to unravel the matrix of life events and displace them alternatively onto social and linguistic relations. This essay focuses on understanding the use of Situationist détournement in Grangaud’s writing, not in the manner of memorial restitution—as Alison James has shown in her study of Perec’s infra-ordinary—but rather, as a means of contesting the power differentials that maintain the social order and its emphasis on private property, the patronym, and the law.

Self-feeding dependence incidence and predictors among nursing home residents: Findings from a 5 year retrospective regional study.

The aim of this regionally-based, retrospective study was to describe the incidence of self-feeding dependence and predictors among elderly patients admitted from 2008 to 2013 to 105 Italian nursing homes. Data reported in a regional database collected at the time of nursing home admission and every 6 months up to the resident's death were accessed. The self-feeding degree of dependence was the dependent variable; at the individual and nursing home levels, explanatory variables were those collected at nursing home admission and every 6 months. The structural equation model and the ordinal polynomial logit regression analysis were performed. A total of 13 175 records of residents when admitted to the nursing home and their following 69 341 records, were included. At the time of nursing home admission, 6496 residents (49.3%) reported a certain degree of dependence in self-feeding and showed slight worsening in their dependence every 6 months. At the individual level, the increased functional dependence raised the proportional odds ratios of approximately 4.36 times of an increased dependence in self-feeding; the degree of cognitive impairment, the lack of social interactions, the occurrence of pressure sores, comorbidities, as well as the clinical instability and time all raised the risk of self-feeding dependence progression. At the nursing home level, an increased number of beds emerged as a factor also increasing the proportional odds of dependence in self-feeding. Factors affecting self-feeding dependence are multi-faceted at the individual and at the nursing home levels.

A COMPARISON OF TWO INTERVENTIONS FOR PEOPLE WITH SEVERE DEMENTIA WHO WANDER: ISSUES AND INSIGHTS

Long term care (LTC) residents with dementia who engage in risky wandering experience adverse outcomes including weight loss, fatigue, injury from falls, resident to resident violence, becoming lost and death. Limited robust evidence currently informs best practice for managing risky wandering in LTC using non-pharmacological interventions. Two different behavioral interventions for these residents were separately trialed: 1) Supervised daily 30-minute outdoor walking sessions (n=7) and 2) Daily 20 minute indoor listening to preferred music sessions (n=10). Walking sessions were initiated and completed more frequently than music sessions (80% vs. 61%). The majority (90%) of commenced walking sessions lasted the full duration while only 60% of commenced music sessions lasted the full duration. Most music sessions were terminated because the participant removed the headphones (54%) or walked away from the speaker (32%). While staff were concerned that a tailored daily walk involving care staff would be difficult to manage with the care routines of the facilities, a similar concern about music sessions was not raised. Staff suggested a dedicated room was needed to implement the music intervention to avoid interruptions. Despite high intervention fidelity and staff and family commitment to the benefits of both interventions, neither intervention has immediate strong clinical applicability potential because of staff attitudes towards tailored programming, issues with the music delivery protocol, and questions about appropriate dose. Refinement of the interventions and implementation strategies will be discussed as methods to address clinical applicability and sustainability in the LTC setting.

“I WISH SOMEONE COULD TELL ME HOW IT FEELS (TO DIE)”: COMMUNICATION ABOUT DEATH AND DYING IN ASSISTED LIVING

Assisted living (AL) is increasingly a site of death, and anxiety about dying has been identified in long-term care residents, their families, and their care staff. Communication about end of life (EOL) in AL has been scripted largely in terms of advanced-care planning and post-death memorialization rather than the dying process itself. To address a gap in knowledge related to desired types of communication, we present a thematic analysis of data from in-depth interviews with 161 participants and 1,098 site visits at 4 diverse AL communities participating in a 5-year NIA-funded study (End-of-Life in Assisted Living: Links between Structure, Process, and Outcomes, R01AG047408-01A1). Interview participants included: 73 residents (mean age 86, 63% female, 62% white), 51 professional caregivers (71% female, 31% white), and 37 informal caregivers (72% female, 72% white). Residents were at least 85 years of age, had multiple chronic conditions, were diagnosed with a life-limiting illness, and/or used hospice. Participants revealed an array of communication behaviors related to resident death and dying (e.g., information seeking, topic avoidance, deflection through jokes). Tensions emerged when there were differences in levels of desire to talk about death and EOL among residents, informal caregivers, and staff. We present a typology of communication styles and delineate areas of participant concordance and discordance, with implications for reducing death anxiety and improving EOL services and supports in AL.

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

ObjectivesTo 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. DesignIn 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 Participants1094 residents in 239 LTCFs, about whom 505 physicians returned the questionnaire. MeasuresNumber 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. ResultsThe 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 ImplicationsThis 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.

Quantifying the excess risk of infant mortality based on race/ethnicity at the county level to inform Michigan's home visiting outreach plans.

ObjectiveMichigan’s infant mortality rate is consistently higher than the national rate, with persistent and significant racial/ethnic disparities. In Michigan, nine counties account for more than 80% of all infant deaths. A home visiting program serving low-income, first-time mothers in high-risk communities is one strategy to reduce infant mortality. The objective of this study was to quantify the risk of infant mortality based on race/ethnicity within Michigan’s highest-risk counties to guide outreach for home visiting services in these counties.MethodsTo maximize the efficiency of limited resources and to identify women at highest risk, we used decomposition to develop risk-based, county-specific estimates of excess infant deaths in nine Michigan counties using data from the 2007 to 2009 Michigan resident infant death file linked to the live birth/file.ResultsThe sample size for these counties was 200,610 live births and 1,836 infant deaths and for the reference population it was 195,180 live births and 1,133 infant deaths The study found that excess mortality varies among populations at the county level when compared to the reference population of infants born to Michigan mothers who attained more than a high school education and were at least 20 years of age at the infant’s birth. The excess risk of mortality was highest for African American infants in seven of the nine counties (56.5% to 132.8%) and for Hispanic infants (86.6%) and white infants (48.2%) in one county each.ConclusionEven with a longstanding commitment and legal mandate to reduce disparities and with efforts to improve outreach into high-risk areas, disparities persist. An improved understanding of the racial/ethnic disparities within communities was useful to focus outreach efforts on reaching women at highest risk as part of subsequent program enrollment.

A multilevel latent Markov model for the evaluation of nursing homes' performance.

The periodic evaluation of health care services is a primary concern for many institutions. We consider services provided by nursing homes with the aim of ranking a set of these structures with respect to their effect on resident health status. Since the overall health status is not directly observable, and given the longitudinal and multilevel structure of the available data, we rely on latent variable models and, in particular, on a multilevel latent Markov model where residents and nursing homes are the first and the second level units, respectively. The model includes individual covariates to account for resident characteristics. The impact of nursing home membership is modelled through a pair of random effects affecting the initial distribution and the transition probabilities between different levels of health status. Through the prediction of these random effects we obtain a ranking of the nursing homes. Furthermore, the proposed model accounts for nonignorable dropout due to resident death, which typically occurs in these contexts. The motivating dataset is gathered from the Long Term Care Facilities programme, a health care protocol implemented in Umbria (Italy). Our results show that differences in performance between nursing homes are statistically significant.

Family perceptions of care at the end of life in UK nursing care homes.

Over a fifth of the population of developed countries die in care homes. While studies are emerging on the outcomes of care in the last few weeks of life, few report on the experience as perceived by the family members. As part of a wider study to improve the delivery of end-of-life care, bereaved relatives of residents who had died in a care home/hospital were sent the Family Perception of Care Scale questionnaire to evaluate their experience of care provision for their relative in the last month of life. The Family Perception of Care Scale questionnaire was posted to bereaved relatives, from 37 nursing care homes in south-east England, 3-6 months following the resident's death. The questionnaires were posted over a 14-month period from 1 October 2009 to 31 November 2010. A total of 869 questionnaires were posted, with a 42% response rate. A global question within the Family Perception of Care Scale looking at the overall satisfaction with the quality of end-of-life care (Q24) indicated that bereaved relatives were satisfied with the care provided. Qualitative responses from family members highlighted some excellent care, although issues in relation to medical input, professional teamwork, last days of life and spiritual care remain problematic. Results provide an important insight into care provision at the end of life within these care homes. While some issues can be addressed through education, relationships and value-based issues are likely to be more difficult to address in light of increasing pressure of healthcare support for UK care homes.

The Wheat Bax Inhibitor-1 Protein Interacts with an Aquaporin TaPIP1 and Enhances Disease Resistance in Arabidopsis.

Bax inhibitor-1 (BI-1) is an endoplasmic reticulum (ER)-resident cell death suppressor evolutionarily conserved in eukaryotes. The ability of BI-1 to inhibit the biotic and abiotic stresses have been well-studied in Arabidopsis, while the functions of wheat BI-1 are largely unknown. In this study, the wheat BI-1 gene TaBI-1.1 was isolated by an RNA-seq analysis of Fusarium graminearum (Fg)-treated wheat. TaBI-1.1 expression was induced by a salicylic acid (SA) treatment and down-regulated by an abscisic acid (ABA) treatment. Based on β-glucuronidase (GUS) staining, TaBI-1.1 was expressed in mature leaves and roots but not in the hypocotyl or young leaves. Constitutive expression of TaBI-1.1 in Arabidopsis enhanced its resistance to Pseudomonas syringae pv. Tomato (Pst) DC3000 infection and induced SA-related gene expression. Additionally, TaBI-1.1 transgenic Arabidopsis exhibited an alleviation of damage caused by high concentrations of SA and decreased the sensitivity to ABA. Consistent with the phenotype, the RNA-seq analysis of 35S::TaBI-1.1 and Col-0 plants showed that TaBI-1.1 was involved in biotic stresses. These results suggested that TaBI-1.1 positively regulates SA signals and plays important roles in the response to biotic stresses. In addition, TaBI-1.1 interacted with the aquaporin TaPIP1, and both them were localized to ER membrane. Furthermore, we demonstrated that TaPIP1 was up-regulated by SA treatment and TaPIP1 transgenic Arabidopsis enhanced the resistance to Pst DC3000 infection. Thus, the interaction between TaBI-1.1 and TaPIP1 on the ER membrane probably occurs in response to SA signals and defense response.

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care.

This study aimed to (1) explore how palliative care in long-term care (LTC) addresses the tensions associated with caring for the living and dying within one care community, and (2) to inform how palliative care practices may be improved to better address the needs of all residents living and dying in LTC as well as those of the families and support staff. This article reports findings from 19 focus groups and 117 participants. Study findings reveal that LTC home staff, resident, and family perspectives of end-of-life comfort applied to those who were actively dying and to their families. Our findings further suggest that eliciting residents' perceptions of end-of-life comfort, sharing information about a fellow resident's death more personally, and ensuring that residents, families, and staff can constructively participate in providing comfort care to dying residents could extend the purview of end-of-life comfort and support expanded integration of palliative principles within LTC.

Being a close family member of a person with dementia living in a nursing home.

To illuminate how family members of persons with dementia describe their own experiences, before and after placing their relative in a nursing home. In the Western world and with a growing population of older people, the number of persons with dementia increases. Family members often become carers in their own homes creating stressful and exhausting situation that eventually leads to relocating the person to a nursing home. This may lead to troubled conscience among family members. This is a qualitative study with descriptive design based on interviews with ten family members to residents with dementia at one small nursing home ward. Data were analysed using content analysis. Five categories were derived from data: relocating a person with dementia - a responsibility; visiting the resident - a relief or a burden; the participants taking part in and monitoring the residents' care needs; participants meeting their own needs; and thoughts about the future and resident's death. The result shows both positive and negative aspects of being a family member to persons with dementia. Family members described feeling relief as well as having a troubled conscience when placing a relative in a nursing home. They held themselves responsible for monitoring and evaluating the quality of the care. Family members expressed fearing a slow death for the person with dementia as well as for their own sake. Most felt well treated by the staff. Family members were responsible for relocating the residents to the nursing home. This in itself was found to cause feelings of moral concerns and generating troubled conscience. Staff at nursing homes needs to exercise family-centred care to benefit the persons with dementia, their family members and the staff themselves.

Factors promoting resident deaths at aged care facilities in Japan: a review.

Due to an increasingly ageing population, the Japanese government has promoted elderly deaths in aged care facilities. However, existing facilities were not designed to provide resident end-of-life care and the proportion of aged care facility deaths is currently less than 10%. Consequently, the present review evaluated the factors that promote aged care facility resident deaths in Japan from individual- and facility-level perspectives to exploring factors associated with increased resident deaths. To achieve this, MEDLINE, CINAHL, Web of Science and Ichushi databases were searched on 23 January 2016. Influential factors were reviewed for two healthcare services (insourcing and outsourcing facilities) as well as external healthcare agencies operating outside facilities. Of the original 2324 studies retrieved, 42 were included in analysis. Of these studies, five focused on insourcing, two on outsourcing, seven on external agencies and observed facility/agency-level factors. The other 28 studies identified individual-level factors related to death in aged care facilities. The present review found that at both facility and individual levels, in-facility resident deaths were associated with healthcare service provision, confirmation of resident/family end-of-life care preference and staff education. Additionally, while outsourcing facilities did not require employment of physicians/nursing staff to accommodate resident death, these facilities required visits by physicians and nursing staff from external healthcare agencies as well as residents' healthcare input. This review also found few studies examining outsourcing facilities. The number of healthcare outsourcing facilities is rapidly increasing as a result of the Japanese government's new tax incentives. Consequently, there may be an increase in elderly deaths in outsourcing healthcare facilities. Accordingly, it is necessary to identify the factors associated with residents' deaths at outsourcing facilities.

Institutional Bereavement Care for Fictive Kin: Staff Grief in CCRCs

PurposeThe purpose of this study was to explore approaches used by administrators to respond to grief and bereavement among staff after the death of a resident. MethodsContinuing care retirement community (CCRC) facilities (n = 10) were randomly selected from a larger study of 31 facilities. Open-ended interviews were conducted using a structured interview protocol. Qualitative methods, specifically thematic analysis, were used to analyze the interview data. FindingsEmergent themes suggest that LTC facilities have freedom in how to provide support for staff members, family members, and other residents after the death of a loved one. However, results show variations in methods for notifying staff of a resident's death, inclusion of direct care staff in caring for the deceased, providing memorial services, and offering grief/bereavement support. When speaking of the loss of a resident and ways to provide grief/bereavement support, only 3 of the 10 administrators discussed the importance of extending such services to the staff. ImplicationsCauses of staff burnout in the CCRC workplace is an unresolved issue. Research has shown that inadequate grief and bereavement support for staff contributes to factors associated with staff burnout and retention. Although administrators hold formal services after a resident has died, there are differences among facilities. It may be that organizations could improve bereavement services for staff.

Preparedness for Resident Death in Long-Term Care: The Experience of Front-Line Staff

ContextAlthough resident death is a common occurrence in long-term care, little attention has focused on how prepared certified nursing assistants (CNAs), who provide most of residents’ daily care, are for this experience. ObjectivesTo identify characteristics of the resident, CNA, and care context associated with CNAs’ preparedness for resident death and to determine differential patterns for emotional versus informational preparedness. MethodsOne hundred forty CNAs completed semistructured, in-person interviews concerning their experiences regarding resident death. The associations of CNA characteristics (e.g., personal end-of-life [EOL] care preferences), CNAs’ perceptions of resident status (e.g., knowledge of resident’s condition), and the caregiving context (e.g., support from coworkers and hospice involvement) with emotional and informational preparedness were examined by the use of bivariate and multivariate analyses. ResultsCNAs who reported that their resident was “aware of dying” or “in pain” expressed greater levels of both emotional and informational preparedness. CNAs who endorsed an EOL care preference of wanting all possible treatments regardless of chances for recovery were likely to report lesser emotional preparedness. More senior CNAs, both in regard to age and tenure, reported greater preparedness levels. Greater support from coworkers and hospice involvement also were associated with greater levels of both facets of preparedness, the latter in particular when hospice care was viewed positively by the CNA. ConclusionHaving more information about resident status and more exchange opportunities within the care team around EOL-related challenges may help CNAs feel more prepared for resident death and strengthen their ability to provide good EOL care.

Nursing home practices following resident death: The experience of Certified Nursing Assistants

This study examined certified nursing assistants' (CNAs) experiences of nursing home practices following resident death. Participants were 140 CNAs who had experienced recent resident death. In semi-structured, in-person interviews, CNAs were asked about their experiences with the removal of the resident's body, filling the bed with a new resident, and how they were notified about the death. The facilities' practice of filling the bed quickly was most often experienced as negative. Responses to body removal and staff notification varied, but negative experiences were reported by a substantial minority. Being notified prior to returning to work was associated with a more positive experience. Learning about the death by walking into a room to find the bed empty or already filled was the most negative experience. Study findings suggest that more mindful approaches to the transitions related to resident deaths would be valued by CNAs and could improve their work experience.

Push to Avoid Rehospitalization Has Unintended Outcomes

Push to Avoid Rehospitalization Has Unintended Outcomes