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.
Interrogeons-nous sur la condition faite aux plus âgés d'entre nous. Leur vulnérabilité n'est-elle pas le résultat d'une accumulation de faits sociaux qui nous rendraient tous vulnérables ? Solitude et isolement, regard méprisant, sentiment d'inutilité, bouc émissaire économique... Faut-il ajouter, dès lors que l'on entre dans le secteur médico-social, l'incompréhension totale du dispositif, la multiplication des intervenants, les parcours ératiques ?
We would like to thank Wen Yang Goh and Han Yee Neo for their interest in and valuable comments to our recently published article. They highlight key conceptual differences between geriatric assessment and comprehensive geriatric assessment and point to the distinction between vulnerability and frailty.
[Début de l'article]
OBJECTIVES: Evidence on associations between marital status and frailty is limited. The objectives of this study were to perform a systematic review for associations between marital status and physical frailty and to perform a meta-analysis to combine findings.
DESIGN: Systematic review and meta-analysis.
SETTING AND PARTICIPANTS: Community-dwelling older people with mean age =60 years.
METHODS: Systematic literature search using 5 databases was conducted in February 2019 to identify longitudinal and cross-sectional studies examining associations between marital status and Fried's phenotype-based frailty status. Additional studies were searched for by reviewing the reference lists of relevant articles and conducting forward citation tracking of included articles. Odds ratio (OR) of marital status and frailty was pooled using a random-effects meta-analysis. Subgroup analysis and analyses stratified by gender and marital status (married, widowed, divorced or separated, and never married) were completed.
RESULTS: A total of 1565 studies were found, from which 3 studies with longitudinal data and 35 studies with cross-sectional data were included. Although longitudinal studies suggested that married men had lower frailty risks than unmarried men while married women had higher frailty risks than widowed women, meta-analysis was not possible because of different methodologies. Meta-analyses of cross-sectional data from 35 studies including 80,754 individuals showed that unmarried individuals were almost twice more likely to be frail than married individuals (pooled odds ratio = 1.88, 95% confidence interval = 1.70-2.07). A high degree of heterogeneity was observed (I2 = 69%) and was partially explained by reasons for not being married and study location. Stratified analyses showed that pooled risks of frailty in the unmarried compared with the married were not statistically different between women and women (P for difference = .62).
CONCLUSIONS AND IMPLICATIONS: Three and 35 studies, respectively, were found providing longitudinal and cross-sectional data regarding associations between marital status and frailty among community-dwelling older people. A meta-analysis of cross-sectional data showed almost twice higher frailty risk in unmarried individuals compared with married individuals. Marital status should be recognized as an important factor, and more longitudinal studies controlling for potential confounding factors are needed.
Parkinson's disease and frailty are both common conditions affecting older people. Little is known regarding the association of the Clinical Frailty Scale with hospital outcomes in idiopathic Parkinson's disease patients admitted to the acute hospital. We aimed to test whether frailty status was an independent predictor of short-term mortality and other hospital outcomes in older inpatients with idiopathic Parkinson's disease.
METHOD: We conducted an observational retrospective study in a large tertiary university hospital between October 2014 and October 2016. Routinely measured patient characteristics included demographics (age and sex), Clinical Frailty Scale, acute illness severity (Emergency Department Modified Early Warning Score), the Charlson Comorbidity Index, discharge specialty, history of dementia, history of depression and the presence of a new cognitive impairment. Outcomes studied were inpatient mortality, death within 30 days of discharge, new institutionalisation, length of stay >= 7 days and readmission within 30 days to the same hospital.
RESULTS: There were 393 first admission episodes of idiopathic Parkinson's disease patients aged 75 years or more; 166 (42.2%) were female. The mean age (standard deviation) was 82.8 (5.0) years. The mean Clinical Frailty Scale was 5.9 (1.4) and the mean Charlson Comorbidity Index was 1.3 (1.5). After adjustment for covariates, frailty and acute illness severity were independent predictors of inpatient mortality; odds ratio for severely/very severely frail or terminally ill = 8.1, 95% confidence interval 1.0-63.5, p = 0.045 and odds ratio for acute illness severity: 1.3, 95% confidence interval 1.1-1.6, p = 0.005). The Clinical Frailty Scale did not significantly predict other hospital outcomes.
CONCLUSIONS: The Clinical Frailty Scale was a significant predictor of inpatient mortality in idiopathic Parkinson's disease patients admitted to the acute hospital and it may be useful as a marker of risk in this vulnerable population.
Most people die when they are old, but predicting exactly when this will occur is unavoidably uncertain. The health of older people is challenged by multimorbidity, disability and frailty. Frailty is the tendency to crises or episodes of rapid deterioration. These are often functional or non-specific in nature, such as falls or delirium, and recovery is usually expected. Health-related problems can be defined in terms of distress and disability. Distress is as often mental as physical, especially for people with delirium and dementia. Problems can be addressed using the principles of supportive and palliative care, but there is rarely a simple solution. Most problems do not have a palliative drug treatment, and the propensity to adverse effects means that drugs must be used with caution. Geriatricians use a model called comprehensive geriatric assessment, including medical, functional, mental health, social and environmental dimensions, but also use a variety of other models, such as the acute medical model, person-centred care, rehabilitation, alongside palliative care. Features such as communication, family engagement and advance planning are common to them all. These approaches are often consistent with each other, but their commonalities are not always recognised. The emphasis should be on making the right decision at a given point in time, taking account of what treatment is likely to deliver benefit, treatment burden and what is wanted. Choices are often limited by what is available and feasible. Palliative care should be integrated with all medical care for frail older people.
BACKGROUND: Rapid frailty screening remains problematic in primary care. The diagnostic test accuracy (DTA) of several screening instruments has not been sufficiently established. We evaluated the DTA of several screening instruments against two reference standards: Fried's Frailty Phenotype [FP] and the Adelaide Frailty Index [AFI]), a self-reported questionnaire.
METHODS: DTA study within three general practices in South Australia. We randomly recruited 243 general practice patients aged 75+ years. Eligible participants were 75+ years, proficient in English and community-dwelling. We excluded those who were receiving palliative care, hospitalised or living in a residential care facility.We calculated sensitivity, specificity, predictive values, likelihood ratios, Youden Index and AUC for: Edmonton Frail Scale [EFS], FRAIL Scale Questionnaire [FQ], Gait Speed Test [GST], Groningen Frailty Indicator [GFI], Kihon Checklist [KC], Polypharmacy [POLY], PRISMA-7 [P7], Reported Edmonton Frail Scale [REFS], Self-Rated Health [SRH] and Timed Up and Go [TUG]) against FP [3+ criteria] and AFI [> 0.21].
RESULTS: We obtained valid data for 228 participants, with missing scores for index tests multiply imputed. Frailty prevalence was 17.5% frail, 56.6% pre-frail [FP], and 48.7% frail, 29.0% pre-frail [AFI]. Of the index tests KC (Se: 85.0% [70.2 - 94.3]; Sp: 73.4% [66.5 - 79.6]) and REFS (Se: 87.5% [73.2 - 95.8]; Sp: 75.5% [68.8 - 81.5]), both against FP, showed sufficient diagnostic accuracy according to our pre-specified criteria.
CONCLUSIONS: Two screening instruments - the KC and REFS, show the most promise for wider implementation within general practice, enabling a personalised approach to care for older people with frailty.
It is estimated that 11.1 million people in the United States are living with serious illness, and most people with serious illness need palliative care. Quality palliative care incorporates culturally sensitive care, and with the increasing diversity in the United States, it has become even more critical that nurses and health care professionals be prepared to meet the unique needs of those living within the diverse and underserved populations of this country. Advocating for access to palliative care for the seriously ill, culturally respectful care at the end of life, and honoring values, practices, and beliefs are essential roles of the nurse. This article presents 4 examples of individuals from diverse and potentially vulnerable US populations who face unique challenges as they deal with their life-limiting diseases and face end of life.
The management of medications in persons with frailty presents challenges. There is evidence of inappropriate prescribing and a lack of consensus among healthcare professionals on the judicious use of medications, particularly for patients with more severe frailty. This study reviews the evidence on the use of commonly prescribed pharmacological treatments in advanced frailty based on a questionnaire of prescribing practices and attitudes of healthcare professionals at different stages in their careers, in different countries. A convenience sample of those attending hospital grand rounds in Ireland, Canada and Australia/New Zealand (ANZ) were surveyed on the management of 18 medications in advanced frailty using a clinical vignette (man with severe dementia, Clinical Frailty Scale 7/9). Choices were to continue or discontinue (stop now or later) medications. In total, 298 respondents from Ireland (n = 124), Canada (n = 110), and ANZ (n = 64) completed the questionnaire, response rate 97%, including 81 consultants, 40 non-consultant hospital doctors, 134 general practitioners and 43 others (nurses, pharmacists, and medical students). Most felt that statins (88%), bisphosphonates (77%) and cholinesterase inhibitors (76%) should be discontinued. Thyroid replacement (88%), laxatives (83%) and paracetamol (81%) were most often continued. Respondents with experience in geriatric, palliative and dementia care were significantly more likely to discontinue medications. Age, gender and experience working in nursing homes did not contribute to the decision. Reflecting the current literature, there was no clear consensus on inappropriate prescribing, although respondents preferentially discontinued medications for secondary prevention. Experience significantly predicted the number and type discontinued, suggesting that education is important in reducing inappropriate prescribing for people in advanced states of frailty.
Background: The increasing population of very old intensive care patients (VIPs) is a major challenge currently faced by clinicians and policymakers. Reliable indicators of VIPs' prognosis and purposefulness of their admission to the intensive care unit (ICU) are urgently needed.
Methods: This is a report from the Polish sample of the VIP1 multicentre cohort study (NCT03134807). Patients = 80 years of age admitted to the ICU were included in the study. Information on the type and reason for admission, demographics, utilisation of ICU procedures, ICU length of stay, organ dysfunction and the decision to apply end-of-life care was collected. The primary objective was to investigate the impact of frailty syndrome on ICU and 30-day survival of VIPs. Frailty was assessed with the Clinical Frailty Scale (= 5 points on a scale of 1-9).
Results: We enrolled 272 participants with a median age of 84 (81-87) years. Frailty was diagnosed in 170 (62.5%) patients. The ICU and 30-day survival rates were equal to 54.6% and 47.3% respectively. Three variables were found to significantly increase the odds of death in the ICU in a multiple logistic regression model: SOFA score (OR = 1.16; 95%CI 1.16-1.24), acute mode of admission (OR = 5.1; 95%CI 1.67-15.57) and frailty (OR = 2.25; 95%CI 1.26-4.01).
Conclusion: Measuring frailty in critically ill older adults can facilitate making more informed clinical decisions and help avoid futile interventions.
Background: In-Home Supportive Services (IHSS) cares for millions of Medicaid-eligible older adults who are often homebound and socially isolated. Advance care planning (ACP) can be challenging for this population, and IHSS programs may play an important role.
Objective: To explore the feasibility of an IHSS ACP program for frail older adults.
Design: Semistructured focus groups.
Setting/Subjects: ifty IHSS stakeholders (20 administrators, 9 case managers, 13 in-home caregivers, and 8 clients) participated in 10 focus groups in San Francisco.
Measurements: Qualitative thematic content analysis by two independent coders.
Results: Four main themes emerged: (1) Unmet needs: patients' wishes unknown during a medical crisis, lack of education/training for clients and staff; (2) Barriers: conflict of interest and potential medical overreach of IHSS caregivers, lack of billing avenues, time limitations, and cultural, literacy, and language barriers; (3) Facilitators: leveraging established workflows, available technology, and training programs; and (4) Implementation: use a tailored, optional approach based on clients' readiness, focus on case managers not caregivers to prevent conflict of interest; use established intake, follow-up, and training procedures; consider cultural and literacy-appropriate messaging; and standardize easy-to-use procedures, simple scripts, and educational guides, within established workflow to support case managers.
Conclusions: An IHSS ACP program is important and feasible for Medicaid-eligible, frail older adults. Implementation suggestions for success by IHSS stakeholders include focusing on case managers rather than in-home caregivers to prevent conflict of interest; tailoring programs to clients' readiness, literacy, and language; creating educational programs for IHSS staff, clients, and community; and standardizing easy-to-use guides and procedures into IHSS workflows.
In this article we critically evaluate an argument against state-sanctioned euthanasia made by David Velleman in his 1992 paper 'Against the right to die'. In that article, Velleman argues that legalizing euthanasia is morally problematic as it will deprive eligible patients of the opportunity of staying 'alive by default'. That is to say, those patients who are rendered eligible for euthanasia as a result of legislative reform will face the burden of having to justify their continued existence to their epistemic peers if they are to be perceived as 'reasonable'. We discuss potential criticisms that could be made of the argument, and consider how a defender of the view might respond. Velleman's argument is particularly interesting as it is a consequentialist argument against state-sanctioned euthanasia, challenging the many consequentialist arguments that have been made in favour of legalizing the procedure. We conclude by suggesting that further research on the question of unfair burdens is important to adequately evaluating the potential harms of legalizing euthanasia for patients at the end of life.
Dans un contexte mondial où les disparités d’accès à la santé sont flagrantes et où l’accès aux opiacés et à la prise en charge palliative demeure largement inexistant, des professionnels de la santé s’engagent pour améliorer l’accès aux soins palliatifs pédiatriques. Sollicitée par des partenaires et disposant d’une expertise forte sur la thématique des soins palliatifs pédiatriques au travers de ses collaborateurs, l’organisation non gouvernementale Médecins du monde-Suisse a lancé fin 2014 un programme pour en favoriser l’accès dans quatre contextes : à Kinshasa en République démocratique du Congo, à Yaoundé au Cameroun, à Lomé au Togo et à Managua au Nicaragua. Le projet vise à renforcer des initiatives locales en soins palliatifs pédiatriques, contribuer à la pérennisation des offres de soins et favoriser des échanges au sein d’un réseau de professionnels aussi bien du nord que du sud tout en impliquant les institutions hospitalières et ministérielles.