BACKGROUND: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people.
METHODS: A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases.
RESULTS: Twenty-three service users and 5 informal carers participated in individual interviews across the cases. Two focus groups were held with an additional 12 participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were 'outsiders,' the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health.
CONCLUSION: These end-of-life care service models operated in a space between the healthcare system and the person's life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact.
Aim: To determine if frailty is associated with poor outcome following in-hospital cardiac arrest; to find if there is a “frailty threshold” beyond which cardiopulmonary resuscitation (CPR) becomes futile.
Methods: Retrospective review of patients aged over 60 years who received CPR between May 2017 and December 2018, in a tertiary referral hospital, which does not provide primary coronary revascularisation. Clinical Frailty Scale (CFS) and Charlson Comorbidity Index were retrospectively assigned.
Results: Data for 90 patients were analysed, the median age was 77 (IQR 70-83); 71% were male; 44% were frail (CFS > 4). Frailty was predictive of in-hospital mortality independent of age, comorbidity and cardiac arrest rhythm (OR 2.789 95% CI 1.145–6.795). No frail patients (CFS > 4) survived to hospital discharge, regardless of cardiac arrest rhythm, whilst 13 (26%) of the non-frail (CFS = 4) patients survived to hospital discharge. Of the 13 survivors (Age 72; range 61–86), 12 were alive at 1 year and had a good neurological outcome, the outcome for the remaining patient was unknown.
Conclusion: Frail patients are unlikely to survive to hospital discharge following in-hospital cardiac arrest, these results may facilitate clinical decision making regarding whether CPR may be considered futile. The Clinical Frailty Scale is a simple bedside assessment that can provide invaluable information when considering treatment escalation plans, as it becomes more widespread, larger scale observations using prospective assessments of frailty may become feasible.
Background: Frailty is a natural consequence of the aging process. With the increasing aging population in Mainland China, the quality of life and end-of-life care for frail older people need to be taken into consideration. Advance Care Planning has also been used worldwide in long-term facilities, hospitals and communities to improve the quality of end-of-life care, increase patient and family satisfaction, and reduce healthcare costs and hospital admissions in Western countries. However, it has not been practiced in China.
Research objective: This study aimed to evaluate the effectiveness of a modified Advance Care Planning intervention in certainty of end-of-life care, preferences for end-of-life care, quality of life concerns, and healthcare utilization among frail older people.
Research design: This study used a quasi-experimental design, with a single-blind, control group, pretest and repeated posttest approach.
Participants and research context: A convenience sample of 74 participates met the eligibility criteria in each nursing home. A total of 148 frail older people were recruited in two nursing homes in Zhejiang Province, China.
Ethical considerations: The study received ethical approval from the Clinical Research Ethics Committee, the Faculty of Medicine, and The Chinese University of Hong Kong, CREC Ref. No: 2016.059.
Findings: The results indicated the Advance Care Planning programme was effective at increasing autonomy in decision making on end-of-life care issues, decreasing decision-making conflicts over end-of-life care issues, and increasing their expression about end-of-life care.
Discussion: This study promoted the participants’ autonomy and broke through the inherent custom of avoiding talking about death in China.
Conclusion: The modified Advance Care Planning intervention is effective and recommended to support the frail older people in their end-of-life care decision in Chinese society.
Background: The use of formalized criteria (or triggers) for palliative care services (PCSs) has been associated with increased use of PCSs in the intensive care unit (ICU).
Objective: To explore the utility/validity of frailty as a trigger for providing PCSs.
Design: This is a prospective cohort study.
Setting/Subjects: Older adults (age =50 years) admitted to ICUs were enrolled.
Measurements: We measured frailty using the Clinical Frailty Scale. We reviewed electronic health records for the presence/absence of six evidence-based triggers, the use and quality of specialty palliative care (SPC), and markers of primary palliative care (PPC). We used descriptive statistics to describe the differences in PPC, SPC, and six-month mortality by frailty and by the presence/absence of triggers.
Results: In a study population of 302 older adults, mean (standard deviation) age 67.2 years (10.5), 151 (50%) were frail and 105 (34.8%) had =1 trigger for PCSs. Of the 151 (55.6%) frail patients, 84 had no triggers for PCSs, despite a 46.4% six-month mortality in this group. Patients with =1 trigger had higher rates of SPC than those without (39.1% vs. 18.3%, p < 0.001); frail patients also had higher SPC than nonfrail patients (32.5% vs. 18.5%, p = 0.006). Patients with =1 trigger had higher rates of PPC than those without (66.7% vs. 44.2%, p < 0.001); no statistically significant difference in PPC was found by frailty (56.3% vs. 47.7%, p = 0.134).
Conclusion: The rates of PCSs and six-month mortality by frailty are consistent with frailty being a valid trigger for PCSs in ICUs; the high prevalence of frailty relative to triggers suggests that ways to increase PCSs would be needed.
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]
OBJECTIVE: At the end of life, the need for care increases. Yet, for structurally vulnerable populations (i.e., people experiencing homelessness and poverty, racism, criminalization of illicit drug use, stigma associated with mental health), access to care remains highly inaccessible. Emerging research suggests that enhancing access to palliative care for these populations requires moving care from traditional settings, such as the hospital, into community settings, like shelters and onto the street. Thus, inner-city workers (ICWs) (e.g., housing support and community outreach) have the potential to play pivotal roles in improving access to care by integrating a "palliative approach to care" in their work.
METHOD: Drawing upon observational field notes and interview data collected for a larger critical ethnographic study, this secondary thematic analysis examines ICWs' (n = 31) experiences providing care for dying clients and garners their perspectives regarding the constraints and facilitators that exist in successfully integrating a palliative approach to care in their work.
RESULTS: Findings reveal three themes: (1) Approaches, awareness, and training; (2) Workplace policies and filling in the gaps; and (3) Grief, bereavement, and access to supports. In brief, ICWs who draw upon harm reduction strategies strongly parallel palliative approaches to care, although more knowledge/training on palliative approaches was desired. In their continuous work with structurally vulnerable clients, ICWs have the opportunity to build trusting relationships, and over time, are able to identify those in need and assist in providing palliative support. However, despite death and dying is an everyday reality of ICWs, many described a lack of formal acknowledgement by employers and workplace support as limitations.
SIGNIFICANCE OF RESULTS: Findings contribute promising practices for enhancing equitable access to palliative care for society's most vulnerable populations by prioritizing front-line workers' perspectives on how best to integrate a palliative approach to care where structurally vulnerable populations live and die.
Patients with frailty experience substantial physical and emotional distress related to their condition and face increased morbidity and mortality compared with their nonfrail peers. Palliative care is an interdisciplinary medical specialty focused on improving quality of life for patients with serious illness, including those with frailty, throughout their disease course. Anesthesiology providers will frequently encounter frail patients in the perioperative period and in the intensive care unit (ICU) and can contribute to improving the quality of life for these patients through the provision of palliative care. We highlight the opportunities to incorporate primary palliative care, including basic symptom management and straightforward goals-of-care discussions, provided by the primary clinicians, and when necessary, timely consultation by a specialty palliative care team to assist with complex symptom management and goals-of-care discussions in the face of team and/or family conflict. In this review, we apply the principles of palliative care to patients with frailty and synthesize the evidence regarding methods to integrate palliative care into the perioperative and ICU settings.
Background: Frailty is characterised by increased vulnerability to falls, disability, hospitalisation and care home admission. However, it is relatively reversible in the early stages. Older people living with frailty often have multiple health and social issues which are difficult to address but could benefit from proactive, person-centred care. Personalised care planning aims to improve outcomes through better self-management, care coordination and access to community resources.
Methods: This feasibility cluster randomised controlled trial aims to recruit 400 participants from 11 general practice clusters across Bradford and Leeds in the north of England. Eligible patients will be aged over 65 with an electronic frailty index score of 0.21 (identified via their electronic health record), living in their own homes, without severe cognitive impairment and not in receipt of end of life care. After screening for eligible patients, a restricted 1:1 cluster-level randomisation will be used to allocate practices to the PROSPER intervention, which will be delivered over 12 weeks by a personal independence co-ordinator worker, or usual care. Following initial consent, participants will complete a baseline questionnaire in their own home including measures of health-related quality of life, activities of daily living, depression and health and social care resource use. Follow-up will be at six and 12 months. Feasibility outcomes relate to progression criteria based around recruitment, intervention delivery, retention and follow-up. An embedded process evaluation will contribute to iterative intervention optimisation and logic model development by examining staff training, intervention implementation and contextual factors influencing delivery and uptake of the intervention.
Discussion: Whilst personalised care planning can improve outcomes in long-term conditions, implementation in routine settings is poor. We will evaluate the feasibility of conducting a cluster randomised controlled trial of personalised care planning in a community population based on frailty status. Key objectives will be to test fidelity of trial design, gather data to refine sample size calculation for the planned definitive trial, optimise data collection processes and optimise the intervention including training and delivery.
BACKGROUND: People experiencing structural vulnerability (e.g. homelessness, poverty, racism, criminalization of illicit drug use and mental health stigma) face significant barriers to accessing care at the end-of-life. 'Family' caregivers have the potential to play critical roles in providing care to these populations, yet little is known regarding 'who' caregivers are in this context and what their experiences may be.
AIM: To describe family caregiving in the context of structural vulnerability, to understand who these caregivers are, and the unique challenges, burdens and barriers they face.
DESIGN: Critical ethnography.
SETTING/PARTICIPANTS: Twenty-five family caregivers participated. Observational fieldnotes and semi-structured interviews were conducted in home, shelter, transitional housing, clinic, hospital, palliative care unit, community-based service centre and outdoor settings.
RESULTS: Family caregivers were found to be living within the constraints of structural vulnerability themselves, with almost half being street family or friends. The type of care provided varied greatly and included tasks associated with meeting the needs of basic survival (e.g. finding food and shelter). Thematic analysis revealed three core themes regarding experiences: Caregiving in the context of (1) poverty and substance use; (2) housing instability and (3) challenging relationships.
CONCLUSION: Findings offer novel insight into the experiences of family caregiving in the context of structural vulnerability. Engaging with family caregivers emerged as a missing and necessary palliative care practice, confirming the need to re-evaluate palliative care models and acknowledge issues of trust to create culturally relevant approaches for successful interventions. More research examining how 'family' is defined in this context is needed.
The older Italian population is posing a challenge in the number of deaths for coronavirus disease 2019 (COVID-19). According to previous data from China, pre-existing health conditions dramatically increase the risk of dying from COVID-19. The presence of multiple diseases in older patients may be considered as a mark of frailty, which increases the person's vulnerability to stress and impairs the multisystemic compensatory effort to restore homeostasis. The clinical complexity associated with the management of frailty may increase the risk of complications during infection as well as the lack of the early recognition of atypical symptoms. There is an urgent need to share expertise and clinical management skills with geriatricians as well as the need for early diagnosis to start treatment at the earliest convenience in the community, with the aim to avoid the collapse of intensive care units.
The current coronavirus disease 2019 (COVID-19) pandemic has put significant strain on all aspects of health care delivery, including palliative care services. Given the high mortality from this disease, particularly in the more vulnerable members of society, it is important to examine how best to deliver a high standard of end-of-life care during this crisis. This case series collected data from two acute hospitals examining the management of patients diagnosed with COVID-19 who subsequently died (n = 36) and compared this with national and local end-of-life audit data for all other deaths. Our results demonstrated a shorter dying phase (38.25 hours vs. 74 hours) and higher rates of syringe driver use (72% vs. 33% in local audits), although with similar average mediation doses. Of note was the significant heterogeneity in the phenotype of deterioration in the dying phase, two distinct patterns emerged, with one group demonstrating severe illness with a short interval between symptom onset and death and another group presenting with a more protracted deterioration. This brief report suggests a spectrum of mode of dying. Overall, the cohort reflects previously described experiences, with increased frailty (median Clinical Frailty Scale score of 5) and extensive comorbidity burden. This brief report provides clinicians with a contemporaneous overview of our experience, knowledge, and pattern recognition when caring for people with COVID-19 and highlights the value of proactive identification of patients and risk of deterioration and palliation.
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.