Cet ouvrage aborde la nécessité de réfléchir ensemble au sens du prendre soin et du fait d'être soigné pour mettre en valeur l'importance d'une implication personnelle de chacun dans la relation en vue de soins de qualité.
[Extrait Résumé éditeur]
What does it mean to be vulnerable? Vulnerable groups of people are those that are disproportionally exposed to risk, but who is included in these groups can change dynamically. A person not considered vulnerable at the outset of a pandemic can become vulnerable depending on the policy response. The risks of sudden loss of income or access to social support have consequences that are difficult to estimate and constitute a challenge in identifying all those who might become vulnerable. Certainly, amid the COVID-19 pandemic, vulnerable groups are not only elderly people, those with ill health and comorbidities, or homeless or underhoused people, but also people from a gradient of socioeconomic groups that might struggle to cope financially, mentally, or physically with the crisis.
We read with interest the Editorial about redefining vulnerability in the era of coronavirus disease 2019 (COVID-19). The Editors recognise underserved and marginalised populations enduring the COVID-19 pandemic, and that the category of vulnerable individuals or groups is not fixed but evolves in response to policies that might create or reinforce vulnerability. When we ask what being vulnerable means, are we also creating the spaces needed to question what it means to be made vulnerable?
Introduction: Existing literature on attitudes toward end-of-life care (EoLC) covers the general public but has little information on the frail elderly population. The aim of the current study is to investigate the preferences of Chinese frail elderly home residents with respect to EoLC by conducting cross-sectional surveys.
Methods and analysis: Surveys, including resident and family versions, were developed based on the existing literature and our pilot interviews. The targeted participants were 400 frail elderly home residents (aged = 65 years old) and 200 family caregivers. Purposive sampling will be used as each elderly home will help to recruit five to 15 elderly participants for the study. Descriptive analysis and modelling will be used to examine preferences on EoLC and related factors, as well as to compare the responses of elderly home residents with those of their family caregivers.
Ethics and dissemination: The cross-sectional survey has obtained approval from the Institutional Review Board. Confidentiality and safety issues will be carefully observed. The results of the study will be disseminated through international conferences, peer-reviewed academic journal publications, and a report in plain language to be shared with elderly residential homes.
Introduction: Frail older people are known to have low rates of advance care planning (ACP). Many frail patients prefer less aggressive treatment, but these preferences are often not known or respected. Frail patients often have multiple hospital admissions, potentially providing opportunities for ACP.
Objective: To systematically review the literature concerning ACP with frail older people in the acute hospital, with particular reference to: (1) Does ACP improve outcomes? (2) What are the views of patients, relatives and healthcare professionals regarding ACP? (3) Does ACP currently occur? (4) What are the facilitators and barriers to ACP?
Design: Systematic literature review and narrative synthesis. Electronic search of MEDLINE, CINAHL, ASSIA, PsycINFO and Embase databases from January 1990 to May 2019 inclusive. Studies in the acute setting of populations with a mean age > 75 years, not focused on a disease-specific terminal condition were included.
Results: 16 133 articles were retrieved, 14 met inclusion criteria. No studies used an objective measure of frailty. One randomised controlled trial (RCT) found that ACP improves outcomes for older patients. Although 74%–84% of capacitous older inpatients are receptive to ACP, rates of ACP are 0%–5%; the reasons for this discrepancy have been little studied. The nature of ACP in clinical practice is unknown thus the extent to which it reflects the RCT intervention cannot be assessed. The outcomes that are important to patients are poorly understood and family and physician experiences have not been explored.
Conclusions: A better understanding of this area could help to improve end-of-life care for frail older people.
Frailty has recently emerged as a dominant concept against a backdrop of media and governmental narratives that frame the growing ageing population as an economic threat to the current configuration of health care in the United Kingdom (UK). Despite frailty's popularity amongst geriatricians and policy makers, the concept faces resistance from other health-care professionals and older people themselves. This paper draws on the Foucauldian idea of biopower; by suggesting that the contemporary emergence and utilisation of frailty represents a biopolitical practice a number or critical observations are made. First, despite biomedical experts acknowledging ambiguities in the definition of frailty, the concept is presented as a truth discourse. This is driven by the ability of frailty measurements to predict risk of costly adverse outcomes; the capability of frailty scores to enumerate complex needs; and the scientific legitimacy frailty affords to geriatric medicine. Consequently, frailty has become pervasive, knowable and measurable. Second, the routine delineation between frail and robust objectifies older people, and can be said to benefit those making the diagnosis over those being labelled frail, with the latter becoming disempowered. Last, studies show that frailty is associated with increasing wealth inequalities in the UK; however, experts’ suggested management of frailty shifts the focus of responsibility away from ideologically driven structural inequalities towards the frail older person, attempting to encourage individuals to modify lifestyle choices. This neglects the association between lifestyle opportunities and socio-economic deprivation, and the impact of long-term poverty on health. These observations, set against the contemporary political climate of economic austerity, cuts to public services and rationalisation of health resources, bring the urgency of a critical consideration of frailty to the fore.
OBJECTIVES: Despite growing interest in frailty as a significant public health challenge, comparatively little is known about how older adults perceive and experience frailty, limiting the effectiveness of strategies to improve frailty management and prevention. The objective of this study was to understand how older people, including frail older persons in residential aged care, perceive and understand frailty through an interpretive-descriptive qualitative study.
SETTING: Aged care facility, community-based university for older persons and an aged care auxiliary care group in a large metropolitan centre in South Australia.
PARTICIPANTS: 39 non-frail, prefrail, frail and very frail South Australian older adults.
METHODS: Seven focus groups were conducted. Participants completed one of two frailty instruments depending on setting and indicated whether they self-identified as frail. Data were analysed inductively and thematically by two independent investigators.
RESULTS: Frailty was described according to three schemas of (1) the old and frail: a static state near the end of life; (2) frailty at any age: a disability model; and (3) frailty as a loss of independence: control, actions and identity. In addition, a theme was identifying linking mindset, cognition and emotion to frailty. The term frailty was viewed negatively and was often implicated with personal choice. There was little correlation between frailty assessments and whether participants self-identified as frail.
CONCLUSIONS: Aside from a disability model, views of frailty as unmodifiable permeated older persons' diverse perspectives on frailty and are likely to impact health behaviours. To our knowledge, this is among the largest qualitative studies examining consumer perceptions of frailty and contributes a clinically relevant schema linking age, prevention and modifiability from a consumer perspective.
BACKGROUND: Frailty and palliative performance scores are 2 markers used in the measurement of functional decline in oncology and hospice care.
OBJECTIVE: To evaluate the frailty and palliative performance scores of a long-term care resident community and determine whether frailty and palliative performance scores can predict hospital readmissions (HR) and survivability of the long-term care resident.
METHODS: One hundred seventy-one long-term care residents from 2 urban facilities were evaluated for functional decline using the Clinical Frailty Scale (CFS) and Palliative Performance Scale (PPS). Sociodemographic, HR, and survival data for 1 year from study initiation were recorded.
RESULTS: The 171 long-term care residents, of lower socioeconomic status, primarily Medicare/Medicaid or dual-eligible, evaluated for functional decline using the CFS and PPS, had mean age of 73.1 years, 52.6% female, 94.7% African American, with 18.1% having HR and 87.1% surviving more than a year. There was a negative association between age and HR (P = .384). Among functional evaluation scales, CFS was positively associated with age (P = .013) but not PPS (P = .673). The residents scored 6.0 ± 1.2 on CFS and 52.8 ± 13.2 on PPS (%) with those residents readmitted to hospital having poorer outcomes. Readmission to hospital and survivability of the long-term care resident were both strongly associated with CFS (P = .001) and PPS (P = .001).
CONCLUSION: There is a strong association between the 2 markers used in the measurement of functional decline-Frailty measured by CFS and Palliative Performance Score measured by PPS. Frailty and palliative performance scores can strongly predict HR and survivability of the long-term care resident.
Objectives: This study examines different combinations of informal and formal care use of older adults and investigates whether these combinations differ in terms of need for care (physical and psychological frailty) and enabling factors for informal and formal care use (social and environmental frailty).
Methods: Using cross-sectional data from the Belgian Ageing Studies (survey, N = 38,066 community-dwelling older adults), Latent Class Analysis (LCA) is used to identify combinations of informal and formal care use. Bivariate analyses are used to explore the relationship between the different combinations of care use and frailty.
Results: Latent Class Analysis (LCA) identified 8 different types of care use, which vary in combinations of informal and formal caregivers. Older adults who are more likely to combine care from family and care from all types of formal caregivers are more physically, psychologically and environmentally frail than expected. Older adults who are more likely to receive care only from nuclear family, or only from formal caregivers are more socially frail than expected.
Conclusions: Older adults with a higher need for care are more likely to receive care from different types of informal and formal caregivers. High environmental frailty and low social frailty are related with the use of care from different types of informal and formal caregivers. This study confirms that informal care can act as substitute for formal care. However, this substitute relationship becomes a complementary relationship in frail older adults. Policymakers should take into account that frailty in older adults affects the use of informal and formal care.
In order to explore frailty subtypes and find their associated risk factors, we conducted cross-sectional surveys of 5,341 seniors aged 60 and over in China using the Frailty Index (FI) scale. We identified four frailty subtypes, namely multi-frail, cognitive and functionally frail, psychologically frail and physiologically frail. Old age and low education level were the common risk factors among the four subtypes. Being widowed, divorced or unmarried was a risk factor for multi-frail, cognitive and functionally frail and psychologically frail, and male sex was a protective factor against cognitive and functionally frail and psychologically frail subtypes. Having a harmonious relationship with family was a protective factor against multi-frail, and fewer visits to the elderly by their children was a risk factor for psychologically frail. Dissatisfaction with their housing was a risk factor for cognitive and functionally frail, psychologically frail and physiologically frail, and a pension being the main source of income was a risk factor for cognitive and functionally frail and psychologically frail. Exercising every day was a protective factor against multi-frail and cognitive and functionally frail, and a lower level of physical activity was a risk factor for all four frailty subtypes. Our findings confirm the heterogeneity of frailty and suggest that different frail elderly individuals need more targeted care interventions.
Background: Hospital Emergency Departments (EDs) experience high presentation rates from older adults residing in Aged Care Facilities (ACFs), yet very few intervention studies have addressed the care needs of this population group. We designed and implemented a nurse-led model of care for older adults from ACFs, and determined its impact on patient outcomes.
Methods: This 12-month pre–post intervention study was conducted during 2013–2014, with follow-up during 2015–2016. Participants included all older adults presenting from ACFs to the ED of Mater Hospital Brisbane (MHB), Australia. Frailty status was determined using the Clinical Frailty Scale (CFS).
Results: All participants were frail (n = 1130), with 19% severely frail, 55% very-severely frail, and 26% terminally ill. The intervention resulted in several improvements in patient outcomes, including significant reductions in ward admissions and 28-day representation rates.
Conclusion: Significant improvements can be achieved by integration of an acute frail older person service into an ED.
Background: Frailty is a clinically recognizable state of reduced resilience to stressors and increased vulnerability to adverse outcomes. The majority of studies have focused on the prevalence and risk factors of frailty, while the incidence of frailty has not been well documented, especially in less developed regions including China—a country that has the largest aging population in the world. We investigated the incidence of frailty among non-frail Chinese older adults by sociodemographic characteristics, disease burden, and geographic region.
Methods: Participants were 4939 adults aged =60 years from the China Health and Retirement Longitudinal Study, a cohort study of a nationally representative sample of middle-aged and older community-dwelling adults from 28 provinces in China. Frailty was assessed by an adapted version of the well-validated Fried’s physical frailty phenotype, in which five criteria were included: weakness, slowness, exhaustion, physical inactivity, and shrinking.
Results: Over an average of 2.1 years of follow-up (10,514.2 person-years), the weighted incidence rate of frailty was 60.6 per 1000 person-years; the incidence rate was 28.8 and 86.6 per 1000 person-years for those who were initially robust and prefrail, respectively. Participants who were older and widowed, had lower education and household income, lived in rural areas, and had higher burden of chronic conditions had higher frailty incidence. Frailty incidence ranged from 44.8 per 1000 person-years in the Southeast to 93.0 per 1000 person-years in the Northwest.
Conclusions: Incidence rate of frailty was 60.6 per 1000 person-years among community-living Chinese adults aged = 60 years. Substantial sociodemographic and geographical disparities exist in frailty incidence.
Cet ouvrage de la collection "Espace éthique" regroupe des contributions sur la notion de vulnérabilité, notamment sur les problèmes et les opportunités posés par son usage dans la société. Ainsi, une politique de protection des personnes vulnérables peut, dans le même temps, être une source d'exclusion. Les auteurs estiment que cette nouvelle éthique peut être positive à condition de ne pas verser dans l'apologie de la vulnérabilité.
Background: Advance care planning (ACP) is a process that enables individuals to describe, in advance, the kind of health care they would want in the future, and has been shown to reduce hospital-based interventions at the end of life. Our goal was to describe the current state of ACP in a home-based primary care program for frail homebound older people in Vancouver, Canada. We did this by identifying four key elements that should be essential to ACP in this program: frailty stage, documentation of substitute decision-makers, and decision-making with regard to both resuscitation (i.e., do not resuscitate (DNR)) and hospitalization (i.e., do not hospitalize (DNH)). While these elements are an important part of the ACP process, they are often excluded from common practice.
Methods: This was a cross-sectional, observational study of data abstracted from 200 randomly selected patient electronic medical records between July 1 and September 30, 2017. We describe the association between demographic characteristics, comorbidities, and four key elements of ACP documentation and decision-making as documented in the clinical record using bivariate comparison, a logistic regression model and multiple logistic regression analysis.
Results: In 73% (n=146) of the patient records, there was no explicit documentation of frailty stage. Sixty-four per cent had documentation of a substitute decision-maker. Of those who had their preferences documented, 90.6% (n=144/159) indicated a preference for DNR, and 23.6% (n=29/123) indicated a preference for DNH. In multiple regression modeling, a diagnosis of dementia and older age were associated with documentation of a DNR preference, adjusted odds ratio (AOR) = 4.79 (95% CI 1.37, 16.71) and AOR = 1.14 (95% CI 1.05, 1.24), respectively. Older age, male sex, and English identified as the main language spoken were associated with a DNH preference. AOR = 1.17 (95% CI 1.06, 1.28), AOR = 4.19 (95% CI 1.41, 12.42), and AOR = 3.42 (95% CI 1.14, 10.20), respectively.
Conclusions: Clinician documentation of some elements of ACP, such as identification of a substitute decision-maker and resuscitation status, have been widely adopted, while other elements that should be considered essential components of ACP, such as frailty staging and preferences around hospitalization, are infrequent and provide an opportunity for practice improvement initiatives. The significant association between language and ACP decisions suggests an important role for supporting cross-cultural fluency in the ACP process.
BJECTIVES: Older people approaching end of life are commonly prescribed multiple medications, many of which may be inappropriate or futile. Our objective was to examine the effect of applying the STOPPFrail, a recently developed deprescribing tool, to the medication regimens of older patients with advanced frailty.
DESIGN: Randomized controlled trial.
SETTING: Two acute hospitals in Ireland.
PARTICIPANTS: Adults 75 years or older (n = 130) with advanced frailty and polypharmacy (five or more drugs), transferring to long-term nursing home care.
INTERVENTION: A STOPPFrail-guided deprescribing plan was presented to attending physicians who judged whether or not to implement recommended medication changes.
MEASUREMENTS: The primary outcome was the change in the number of regular medications at 3 months. Secondary outcomes included unscheduled hospital presentations, falls, quality of life, monthly medication costs, and mortality.
RESULTS: Intervention (n = 65) and control group (n = 65) participants were prescribed a mean (plus or minus standard deviation [SD]) of 11.5 (±3.0) and 10.9 (±3.5) medications, respectively, at baseline. The mean (SD) change in the number of medications at 3 months was -2.6 (±2.73) in the intervention group and -.36 (±2.60) in the control group (mean difference = 2.25 ± .54; 95% confidence interval [CI] = 1.18-3.32; P < .001). The mean change in monthly medication cost was –$74.97 (±$148.32) in the intervention group and –$13.22 (±$110.40) in the control group (mean difference $61.74 ± $26.60; 95% CI = 8.95-114.53; P = .02). No significant differences were found between groups for any of the other secondary outcomes.
CONCLUSION: STOPPFrail-guided deprescribing significantly reduced polypharmacy and medication costs in frail older people. No significant differences between groups were observed with regard to falls, hospital presentations, quality of life, and mortality, although the trial was likely underpowered to detect differences in these outcomes.
Aim: To evaluate person-centeredness in nursing homes from the perspective of frail older persons, before and after implementing an educational intervention about palliative care.
Design: A crossover design.
Methods: Forty-four older persons living in nursing homes were interviewed. A convergent mixed-method was used to analyse data.
Results: The older persons expressed feelings of unsafety related to shortcomings in staff. These shortcomings implied that the responsibilities of everyday activities and making the residents' existence more bearable were transferred to the next of kin. The dropout rate related to death and not enough energy was considerably high (51%) even though one of the inclusion criteria was to have enough energy to manage a 1-hr interview. This result supports previous research describing the difficulties in retaining older persons in research and indicated that the dose of the intervention was not sufficient to improve person-centred care.
BACKGROUND: An increasing number of the ageing population worldwide is at risk of becoming frail and incapacitated. This has the potential to impact not only on the well-being of individuals but also on the sustainability of healthcare systems.
OBJECTIVE: The aim of this study was to explore the views and experiences of frailty from the perspective of primary care professionals, including nurses, who work directly with older people within the community.
METHODS: A qualitative approach with a descriptive phenomenological methodology was used, which focused on exploration of primary care professionals' current experiences of early detection and prevention of the onset of frailty. Four multi-professional focus groups were held with a total of thirty-three primary care professionals who worked with older people as part of their daily role. Participants included district nurses, general practitioners, home care workers, physiotherapists and social workers.
RESULTS: Professional views encompassed typical patterns of ageing, loneliness, presence of comorbidity, disability and end of life, with social conditions prevalent in most frailty they encountered. Three main themes emerged: the psychosocial nature of frailty, late detection of frailty and barriers to the feasibility of prevention. Physical frailty was considered a constituent part of ageing, which recognised the presence of a skills gap related to the detection of the early signs of frailty. Present health and social care systems are not designed to prevent frailty, and the competencies required by health and social care professionals are not usually included as part of their training curricula. This may hinder opportunities to intervene to prevent associated decline in ability of older adults.
CONCLUSIONS: To enhance the early assessment of frailty and the planning of preventive multi-factorial interventions in primary care and community settings, training and effective detection strategies should be incorporated into the role and daily care activities of primary care professionals.
IMPLICATIONS FOR PRACTICE: Using a multidimensional assessment instrument can help primary care professionals to identify older people who are frail or may become frail. In order to be able to carry out this properly strong inter-professional collaboration is needed. In addition, interventions aimed at preventing frailty or adverse outcomes of frailty should be tailor-made and thus should meet the needs and wishes of an older person.
BACKGROUND: The best possible care for frail older patients at the end of life can require the integration of geriatric and palliative approaches, possibly with different accentuations at different times. General practitioners (GP) are particularly important in this context: they provide patients with low-threshold primary care close to their homes and provide both general palliative care and geriatric services.
OBJECTIVE: What are the challenges for GPs in caring for frail older patients at the end of their lives?
MATERIAL AND METHODS: A secondary data analysis of 52 qualitative interviews was carried out, which were serially obtained at 4 points in time over a period of 18 months with 14 family doctors. In addition, one focus group with five GPs took place. The analysis was carried out according to the principles of grounded theory.
RESULTS: The results show that GPs see the care of frail older patients at the end of their lives through a) the growing number of older people, b) multimorbidity and complexity of the problem areas, c) the integration of geriatric and palliative approaches, d) the high average age of general practitioners and the lack of junior staff and e) the problem of ensuring care in rural areas as a major challenge. The practical transition between geriatric and palliative care is considered by GPs to be fluid and there is a desire for more integration of both disciplines.
CONCLUSION: In this study GPs perceived a large overlap between geriatric and palliative care. Both approaches should be offered for a selection of patients as a combined service. In the future a systematic network between GPs and geriatricians in practices, clinics, and day clinics will be necessary.
INTRODUCTION: Patients with multimorbidity plus additional impairments (eg, mobility limitations, disability, cognitive impairments or frailty) are at the highest risk for poor healthcare outcomes. Advanced care planning (ACP) provides patients and their surrogates the opportunity to discuss their goals, values and priorities for healthcare-particularly in the context of end-of-life care. ACP discussions promote more person-centred care; however, it is currently underused. There is a tremendous need for systematic, scalable approaches to individualised ACP that promotes patient and family engagement. Here we describe the study protocol for a randomised effectiveness trial of a nurse navigator and informatics intervention designed to improve the documentation and quality of ACP discussions.
METHODS AND ANALYSIS: This is a randomised, pragmatic, effectiveness trial; patients aged 65 years and older who have multimorbidity plus impairments in either physical function (eg, mobility limitations or disability) or cognition, and/or frailty within an affiliated Accountable Care Organization were eligible. The electronic health record was used to develop an automatic prescreening system for eligible patients (n=765) and participants were randomised in a 1:1 ratio to either the nurse navigator-led ACP pathway or usual care. Our primary outcomes are documentation of ACP discussions within the EHR along with the quality of ACP discussions. Secondary outcomes include a broad range of ACP actions (eg, usage of ACP billing codes, choosing a surrogate decision-maker and advance directive documentation). Outcomes will be measured over 12 months of follow-up.
ETHICS AND DISSEMINATION: This study has been approved by the appropriate Institutional Review Boards and is guided by input from patient and clinical advisory boards. The results of this study will inform a scalable solution to ACP discussions throughout our healthcare system and statewide.
Comment vieillir en Ehpad ou en USLD dans un monde étrange où il n'y a que des "vieux", où la majorité des résidents ont des troubles cognitifs ? Comment se sentir vivant, existant, malgré la fragilité et les troubles ? Comment garder une place dans la société ? Rencontrer ces personnes nous fait découvrir le monde autrement, entrer dans un autre espace-temps. Leur fragilité nous confronte à l'essentiel de la vie : être avec, dans le moment présent, authentiquement.