L’auteur raconte sa reconstruction après la mort de Paula, sa compagne. Il témoigne de la douleur du deuil et de sa rencontre avec Chloé, avec qui il
partage désormais sa vie. Ce roman fait suite à "Jardins : saisons".
Marie Dorval travaille dans un établissement où vivent Suzanne, Tonton, Louise, tous âgés et plus ou moins touchées par la démence sénile ou d’autres maladies liées au vieillissement. Elle y croise également Marie-Paule, la fille d’une des résidentes qui vient quotidiennement donner un repas à sa mère. Roman autobiographique sur l’univers des maisons de retraite.
In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age =50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50-64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research.
The coronavirus disease 2019 (COVID-19) pandemic is causing unprecedented challenges for long-term care homes (LTCHs). There have been several clusters of severe acute respiratory syndrome coronavirus 2 infections within LTCHs and approximately half of all deaths in Canada at the time of writing have been in this setting.
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As more people live and die in the community despite complex health needs and functional impairment, the need for hospice increases. We found high and increasing penetration of hospice in community-based residential settings, compared with hospice use in private residences and nursing homes.
Background: Increasing utilisation of hospice services has been a major focus in oncology, while only recently have cardiologists realised the similar needs of dying patients with heart failure (HF). We examined recent trends in locations of deaths in these two patient populations to gain further insight.
Methods: Complete population-level data were obtained from the Mortality Multiple Cause-of-Death Public Use Record from the National Center for Health Statistics database, from 2013 to 2017. Location of death was categorised as hospital, home, hospice facility or nursing facility. Demographic characteristics evaluated by place of death included age, sex, race, ethnicity, marital status and education, and a multivariable logistic regression analysis was performed to analyse possible associations.
Results: Among 2 780 715 deaths from cancer, 27% occurred in-hospital and 14% in nursing facilities; while among 335 350 HF deaths, 27% occurred in-hospital and 30% in nursing facilities. Deaths occurred at hospice facilities in 14% of patients with cancer, compared with just 8.7% in HF (p=0.001). For both patients with HF and cancer, the proportion of at-home and in-hospice deaths increased significantly over time, with majority of deaths occurring at home. In both cancer and HF, patients of non-Hispanic ethnicity (cancer: OR 1.29, (1.27 to 1.31), HF: OR 1.14, (1.07 to 1.22)) and those with some college education (cancer: OR 1.10, (1.09 to 1.11); HF: OR 1.06, (1.04 to 1.09)) were significantly more likely to die in hospice.
Conclusion: Deaths in hospital or nursing facilities still account for nearly half of cancer or HF deaths. Although positive trends were seen with utilisation of hospice facilities in both groups, usage remains low and much remains to be achieved in both patient populations.
BACKGROUND: Considering social cognitive theory and current literature about successful advance care planning in nursing homes, sufficient knowledge and self-efficacy are important preconditions for staff to be able to carry out advance care planning in practice.
AIM: Exploring to what extent nurses' knowledge about and self-efficacy is associated with their engagement in advance care planning in nursing homes.
DESIGN: Survey study as part of a baseline measurement of a randomised controlled cluster trial (NCT03521206).
SETTING/PARTICIPANTS: Nurses in a purposive sample of 14 nursing homes in Belgium.
METHODS: A survey was distributed among nurses, evaluating knowledge (11 true/false items), self-efficacy (12 roles and tasks on 10-point Likert-type scale) and six advance care planning practices (yes/no), ranging from performing advance care planning conversations to completing advance directives.
RESULTS: A total of 196 nurses participated (66% response rate). While knowledge was not significantly associated with advance care planning practices, self-efficacy was. One unit's increase in self-efficacy was statistically associated with an estimated 32% increase in the number of practices having carried out.
CONCLUSIONS: Nurses' engagement in advance care planning practices is mainly associated with their self-efficacy rather than their knowledge. Further research is necessary to improve the evidence regarding the causal relationship between constructs. However, these results suggest that educational programmes that focus solely on knowledge might not lead to increasing uptake of advance care planning in nurses.
BACKGROUND: With a growing nursing home population suffering from chronic progressive illnesses and evolving patterns of comorbidities, end-of-life communication takes on a critical role to enable healthcare professionals to gather information about the resident's wishes for care at the end-of-life and organise the care plan accordingly.
AIM: To explore nurses' perspective about the process by which end-of-life communication impacts on the goal of end-of-life care in nursing home residents.
DESIGN: A qualitative descriptive research design based on thematic analysis was performed. Fourteen nurses involved in the care of residents during their last week of life were recruited across 13 Italian nursing homes and accounted for 34 semi-structured interviews. A combined approach of analysis that incorporated a data-driven inductive approach and a theory-driven one was adopted.
RESULTS: Twelve themes described how end-of-life communication may contribute to adjust the care plan in nursing home according to the nurses' perspective. Five antecedents (i.e. life crisis or transitions, patient-centered environment, arising the question of possible dying, quality of relationships and culture of care) influenced the establishment and quality of communication, and five attributes depicted the characteristics and potential mechanisms of end-of-life communication (i.e. healthcare professional-resident and healthcare professional-family carers communication, knowledge of family carers' preferences, knowledge of residents' preferences, family carers and residents understanding, and shared decision-making), while curative-oriented and palliative-oriented care goals emerged as consequences.
CONCLUSION: This study provides insight into the nursing perspective of end-of-life communication between healthcare professionals and bereaved family carers of nursing home residents. Several factors influenced the occurrence and quality of end-of-life communication, which contributed to the transition towards palliative-oriented care by using and improving knowledge about family cares' and resident's preferences for end-of-life care, promoting family carers and residents understanding about prognosis and treatments available, and fostering shared decision-making.
BACKGROUND: In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dementia. This article investigates how ADs interventions in nursing homes strive simultaneously to behave in line with the principles of care ethics and with the intention to respond to legally binding instructions. Healthcare to dying residents with dementia in nursing homes is interpreted in light of the Regulation theory.
METHODS: Nursing home palliative care reference nurses were contacted through questionnaire. One hundred twenty-one addresses were reached, 69 responses were collected, giving a response rate of 57%. In order to deepen the understanding, 10 semi-directive interviews were conducted in 10 different nursing facilities with 12 palliative nurses.
RESULTS: Presently, Swiss nursing homes are lacking a model of AD suitable to people with dementia. The study sheds light on dissimilarities in the purpose assigned to ADs' procedure in the different facilities. Discrepancies in end-of-life care practices reveal more the influence of structural and organisational devices specific to each setting than conflicting views on end-of-life care principles. We analyse the interpretation of the Law and its implementation in the participating NHs as compromises that could be accounted for as a form of social regulation.
CONCLUSION: Dementia accentuates the uncertainty inherent to end-of-life trajectories. The implementation of standardised procedures aimed at collecting the wishes of the person deprived of his or her discernment is source of dissonances with regard to the multiple interests involved in these care situations. In this context, the drafting of ADs during end-of-life care in NH correspond to new normative constraints requiring new collective regulation actions.
Purpose: We studied the prevalence of medications of questionable benefit in the last 6 months of life among older nursing home residents with and without dementia in Germany.
Methods: a retrospective cohort study was conducted on claims data from 67,328 deceased nursing home residents aged 65+ years who were admitted between 2010 and 2014. We analyzed prescription regimens of medications of questionable benefit in the 180–91-day period and the 90-day period prior to death for residents with dementia (n = 29,052) and without dementia (n = 38,276). Factors associated with new prescriptions of medications of questionable benefit prior to death were analyzed using logistic regression models among all nursing home residents and stratified by dementia.
Results: A higher proportion of nursing home residents with dementia were prescribed at least one medication of questionable benefit in the 180–91-day (29.6%) and 90-day (26.8%) periods prior to death, compared with residents without dementia (180–91 days, 22.8%; 90 days, 20.1%). Lipid-lowering agents were the most commonly prescribed medications. New prescriptions of medications of questionable benefit were more common among residents with dementia (9.8% vs. 8.7%). When excluding anti-dementia medication, new prescriptions of these medications were more common among residents without dementia (6.4% vs. 8.0%). The presence of dementia (odds ratio [OR] 1.40, 95% confidence interval [95%CI] 1.32–1.48) and excessive polypharmacy were associated with new prescriptions of medications of questionable benefit prior to death (OR 4.74, 95%CI 4.15–5.42).
Conclusion: even when accounting for anti-dementia prescriptions, the prevalence of nursing home residents with dementia receiving medications of questionable benefit is considerable and may require further attention.
Background: A substantial number of older adults die in residential aged care facilities, yet little is known about the characteristics of and how best to optimise medication use in the last year of life.
Aim: The aim of this review was to map characteristics of medication use in aged care residents during the last year of life in order to examine key concepts related to medication safety and draw implications for further research and service provision.
Design: A scoping review following Arskey and O’Malley’s framework was conducted using a targeted keyword search, followed by assessments of eligibility based on title and content of abstracts and full papers. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, the scoping review protocol was prospectively registered to the Open Science Framework on 27 November 2018.
Data Sources: We searched MEDLINE, EMBASE, AMED, CINAHL and Cochrane databases to identify peer-reviewed studies published between 1937 and 2018, written in English and looking at medication use in individuals living in aged care facilities within their last year of life.
Results: A total of 30 papers were reviewed. Five key overarching themes were derived from the analysis process: (1) access to medicines at the end of life, (2) categorisation and classes: medicines and populations, (3) polypharmacy and total medication numbers, (4) use of symptomatic versus preventive medications and (5) ‘inappropriate’ medications.
Conclusion: Number of prescriptions or blunt categorisations of medications to assess their appropriateness are unlikely to be sufficient to promote well-being and medication safety for older people in residential aged care in the final stages of life.
Background: There is insufficient high-quality evidence to suggest that palliative care education can impact care home settings.
Aims: To identify, appraise and synthesise all available evidence on the barriers and facilitators to providing palliative care education in residential and nursing care homes and to generate recommendations to increase the effectiveness of future palliative care education programmes in care homes.
Methods: A rapid review searching CINAHL, Medline and ProQuest. One author screened full-text articles for inclusion. Any uncertainties were discussed with a second author.
Findings: Twenty-two articles were included in the full review. Analysis of the included articles revealed the following overlapping themes: structural systems; cultural and personal issues; and knowledge translation issues with interaction.
Conclusion: Addressing the barriers and facilitators when designing palliative care education programmes for care homes will lead to more successful outcomes.
Un jeune garçon qui a des difficultés scolaires (DYS) apprend que son grand-père, atteint de la maladie d'Alzheimer, va être placé en maison de retraite. Il décrit le passé d'explorateur de son grand-père puis décide avec son camarade de classe, un garçon émigré d'Irak, de sauver son grand-père en partant à la recherche de la grand-mère disparue.
Background: Increased awareness of the clinical course of nursing home residents with advanced dementia and advance care planning (ACP) has become the cornerstone of good palliative care.
Objective: The aim of our study is to describe changes in ACP in the form of physician treatment orders (PTOs), symptom prevalence and possible burdensome interventions among nursing home (NH) residents who died between 2004–2009 and 2010–2013
Methods: Retrospective study
Results: The number of PTOs regarding forgoing antibiotics or parenteral antibiotics, forgoing artificial nutrition or hydration or forgoing hospitalisation doubled between 2004–2009 and 2010–2013 (38.1% vs. 64.9%, p < 0.001; 40.0% vs. 81.7%, p < 0.001; 28.1% vs. 69.5%, p < 0.001, respectively). PTOs were also done significantly earlier in 2010–2013 than in 2004–2009. The prevalence of distressing symptoms and possible burdensome interventions remained unchanged, although the prevalence of consistency with the PTOs was high.
Conclusion: Despite the increased number of PTOs, this had little effect on symptom prevalence and possible burdensome interventions experienced by NH residents in the last days of life.
Objectives: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.
Methods: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly discriminatory staff-reported instruments.
Results: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia, and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24 to 27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = .03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia, and 48% in residents without dementia (P < .001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = .04; other stages of dementia, P = .04; without dementia, P < .001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < .001) and without dementia (P = .003), while the presence and severity of dementia moderated this association (P = .03). Developing “other clinical events” was not associated with comfort.
Conclusions: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia, which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia.
Religion and culture play important roles in influencing end-of-life communication among the elderly. However, little is known about end-of-life communication among elderly nursing home residents. A qualitative study involving a sample of 13 elderly residents of a non- government nursing home in the north of Peninsular Malaysia was conducted to investigate residents' attitudes and ideas about their end-of-life preferences. Thematic analysis was performed to identify major themes emerging from the interviews. This study found that elderly residents actively avoided end-of-life communication, but that their cultural and religious beliefs remained of paramount importance. It is hoped that these findings will provide a platform upon which to improve current nursing home care in Malaysia.
BACKGROUND AND OBJECTIVES: Transitioning to a nursing home (NH) is a major life event for 1.4 million NH residents in the United States. Most post-acute NH admissions plan for rehabilitation and discharge home, but with nearly 70% of NH residents being palliative care (PC) eligible, many evolve into long-term placements secondary to poor health and associated decline in function and/or cognition. This article describes the perceptions of NH PC-eligible residents and families transitioning to life in a NH.
METHODS: Residents at 3 NHs in Northern California (N = 228) were screened for PC eligibility. A convenience sample of PC-eligible residents and their family members (n = 28) participated in qualitative interviews that explored the experience of living as a NH resident with serious illness. Data were analyzed using grounded theory methodology.
RESULTS: Our study provides insights into the experiences of transitioning to a NH from the perspectives of PC-eligible residents and their families. These data describe how PC-eligible residents and their families experienced disempowerment as they perceived being left out of decisions to go to a NH, loss of autonomy once at the NH, dealt with the realization that they would not be going home, and described perceived barriers to going home.
DISCUSSION AND IMPLICATIONS: The inclusive and person-centered model of care that PC provides naturally empowers residents and family members. Adequate provision of PC services, together with changes in policy related to NH culture and benefit management, could improve the experience of transitioning to a nursing home.
The aim of this study was to compare the symptomatology, palliative care outcomes, therapeutic procedures, diagnostic tests, and pharmacological treatments for people with dementia (PWD) and without dementia (PW/OD) admitted to Spanish nursing homes.
DESIGN: This was a cross-sectional study which is part of a long-term prospective follow-up of elderly people performed in nursing homes to measure end-of-life care processes.
PARTICIPANTS: 107 nursing home patients with advanced or terminal chronic diseases were selected according to the criteria of the Palliative Care Spanish Society.
SETTING: Two trained nurses from each nursing home were responsible for participant selection and data collection. They must have treated the residents and had a minimum seniority of 6 months in the nursing home.
MEASUREMENTS: Sociodemographic data; Edmonton Symptom Assessment Scale; Palliative Care Outcome Scale; and prevalence of diagnostic tests, pharmacological treatments, and therapeutic procedures were evaluated.
RESULTS: Pain, fatigue, and nausea were found to be significantly higher in the nondementia group and insomnia, poor appetite, and drowsiness were significantly higher in the dementia group. Patient anxiety, support, feeling that life was worth living, self-worth, and practical matters management were higher in the nondementia group. Regarding drugs, use of corticoids was higher in the nondementia group, while use of anxiolytics was higher in the dementia group. Diagnostic procedures such as urine analysis and X-ray were higher in the dementia group.
CONCLUSIONS: Differences in symptom perception, diagnostic tests, and pharmacological procedures were found between patients with and without dementia. Specific diagnostic tools need to be developed for patients with dementia.
AIMS: New Zealanders dying in public hospitals or hospices are increasingly being discharged and admitted-to-die in aged residential care (ARC) facilities as hospitals and hospices struggle to meet demand. This study sought to investigate how care is delivered to patients admitted-to-die in an ARC facility.
METHODS: A mixed-methods case study including a clinical notes review of seven patients who died in one ARC facility within three months of admission and a focus group with ARC facility staff and visiting professionals from other organisations.
RESULTS: The clinical notes review showed a high burden of palliative care symptoms that constituted specialist palliative care, provided by ARC staff plus professionals from other organisations. Focus group data showed those involved were willing, but expressed significant concern about lack of structure and funding.
CONCLUSIONS: As our increasing and aging population reaches end-of-life, New Zealand hospitals/hospices will not be able to provide ongoing specialist palliative care and admission-to-die in ARC facilities may be a viable alternative. However, ARC facilities are not set up or staffed to provide specialist palliative care of those admitted-to-die. A specific model of care that is funded appropriately is required.
OBJECTIVES: We investigated trends in end-of-life hospitalizations among nursing home residents (NHR) over 10 years and looked at differences between age groups and sexes as well as the length of terminal hospital stays.
STUDY DESIGN: Retrospective cohort study based on health insurance claims data of the AOK Bremen/Bremerhaven. All NHR aged 65 years or more who died between 2006 and 2015 were included.
MAIN OUTCOME MEASURES: We assessed the proportions of decedents who were in hospital on the day of death and during the last 3, 7, 14 and 30 days of life, stratified by two-year periods. Multiple logistic regressions were conducted to study changes over time, adjusting for covariates.
RESULTS: A total of 10,781 decedents were included (mean age 86.1 years, 72.1 % females). Overall, 29.2 % died in hospital, with a slight decrease from 30.3 % in 2006-2007 to 28.3 % in 2014-2015 (OR 0.86; 95 % CI 0.75-0.98). Of the 3150 terminal hospitalizations, 35.5 % lasted up to 3 days and the mean length of stay decreased from 9.0 (2006-2007) to 7.5 days (2014-2015). When looking at the last 7, 14 and 30 days of life, no changes over time were found. Male sex and younger age were associated with a higher chance of end-of-life hospitalization in almost all analyses.
CONCLUSIONS: End-of-life hospitalizations of NHR are common in Germany. There has been a small decrease during recent years in the proportion of in-hospital deaths, but not of hospitalizations during the last 7, 14 and 30 days of life. This might be explained by shorter durations of hospital stays.