Les éditeurs de la revue Etudes ont compilé une série d'articles publiés entre 2005 et 2011 sur la notion de "prendre soin" :
-Introduction d'Agatha Zielinski : Que signifie "prendre soin" ?
-Pour une médecine de l'incurable, Céline Lefève et Jean-Christophe Mino (Juin 2008)
-Violence de la maladie, entretien avec Claire Marin (Juillet 2008)
-Former de vrais thérapeutes, Jean-Christophe Mino, Marie-Odile Frattini, Emmanuel Fournier (Février 2011)
-L'éthique du Care, une nouvelle façon de prendre soin, Agatha Zielinski (décembre 2010)
-Postface de Patrick Verspieren, "Le pacte de soin" à partir de l'article "Malade et médecin partenaires" (Janvier 2005)
BACKGROUND: A critical barrier to improving the quality of end-of-life (EOL) cancer care is our lack of understanding of the mechanisms underlying variation in EOL treatment intensity. This study aims to fill this gap by identifying 1) organizational and provider practice norms at major US cancer centers, and 2) how these norms influence provider decision making heuristics and patient expectations for EOL care, particularly for minority patients with advanced cancer.
METHODS: This is a multi-center, qualitative case study at six National Comprehensive Cancer Network (NCCN) and National Cancer Institute (NCI) Comprehensive Cancer Centers. We will theoretically sample centers based upon National Quality Forum (NQF) endorsed EOL quality metrics and demographics to ensure heterogeneity in EOL intensity and region. A multidisciplinary team of clinician and non-clinician researchers will conduct direct observations, semi-structured interviews, and artifact collection. Participants will include: 1) cancer center and clinical service line administrators; 2) providers from medical, surgical, and radiation oncology; palliative or supportive care; intensive care; hospital medicine; and emergency medicine who see patients with cancer and have high clinical practice volume or high local influence (provider interviews and observations); and 3) adult patients with metastatic solid tumors and whom the provider would not be surprised if they died in the next 12 months and their caregivers (patient and caregiver interviews). Leadership interviews will probe about EOL institutional norms and organization. We will observe inpatient and outpatient care for two weeks. Provider interviews will use vignettes to probe explicit and implicit motivations for treatment choices. Semi-structured interviews with patients near EOL, or their family members and caregivers will explore past, current, and future decisions related to their cancer care. We will import transcribed field notes and interviews into Dedoose software for qualitative data management and analysis, and we will develop and apply a deductive and inductive codebook to the data.
DISCUSSION: This study aims to improve our understanding of organizational and provider practice norms pertinent to EOL care in U.S. cancer centers. This research will ultimately be used to inform a provider-oriented intervention to improve EOL care for racial and ethnic minority patients with advanced cancer.
Background: This retrospective cohort study aims to define the clinical findings and outcomes of every patient admitted to a district general hospital in Surrey with COVID-19 in March 2020, providing a snapshot of the first wave of infection in the UK. This study is the first detailed insight into the impact of frailty markers on patient outcomes and provides the infection rate among healthcare workers.
Methods: Data were obtained from medical records. Outcome measures were level of oxygen therapy, discharge and death. Patients were followed up until 21 April 2020.
Results: 108 patients were included. 34 (31%) died in hospital or were discharged for palliative care. 43% of patients aged over 65 died. The commonest comorbidities were hypertension (49; 45%) and diabetes (25; 23%). Patients who died were older (mean difference ±SEM, 13.76±3.12 years; p<0.0001) with a higher NEWS2 score (median 6, IQR 2.5–7.5 vs median 2, IQR 2–6) and worse renal function (median differences: urea 2.7 mmol/L, p<0.01; creatinine 4 µmol/L, p<0.05; eGFR 14 mL/min, p<0.05) on admission compared with survivors. Frailty markers were identified as risk factors for death. Clinical Frailty Scale (CFS) was higher in patients over 65 who died than in survivors (median 5, IQR 4–6 vs 3.5, IQR 2–5; p<0.01). Troponin and creatine kinase levels were higher in patients who died than in those who recovered (p<0.0001). Lymphopenia was common (median 0.8, IQR 0.6–1.2; p<0.005). Every patient with heart failure died (8). 26 (24%) were treated with continuous positive airway pressure (CPAP; median 3 days, IQR 2–7.3) and 9 (8%) were intubated (median 14 days, IQR 7–21). All patients who died after discharge (4; 6%) were care home residents. 276 of 699 hospital staff tested were positive for COVID-19.
Conclusions: This study identifies older patients with frailty as being particularly vulnerable and reinforces government policy to protect this group at all costs.
PURPOSE OF REVIEW: This review seeks to identify the current prevalence of potentially life-limiting respiratory conditions among those who have experienced homelessness, incarceration or had criminal justice involvement, and current developments in, and barriers to, delivery of supportive and palliative respiratory care to these populations. These structurally vulnerable populations are known to be growing, their health behaviours more risky, and their morbidity and mortality higher, with evidence of accelerated ageing.
RECENT FINDINGS: Most studies identified investigated prevalence of respiratory conditions, which were found to be high. In contrast, only one study directly explored supportive and palliative care (in a prison population) and none considered or addressed palliative and end-of-life needs of these populations, or mechanisms to address them. There was an absence of qualitative work and studies of the impact on, or role of, family, friends or informal networks.
SUMMARY: There is a need for evidence-based interventions to reduce the risk of communicable respiratory conditions and a greater understanding of disease trajectories and management for these vulnerable populations, including provision of accessible appropriate supportive, palliative and end-of-life care.
In order to plan the right palliative care for patients and their families, it is essential to have detailed information about patients' needs. To gain insight into these needs, we analyzed five Italian local palliative care networks and assessed the clinical care conditions of patients facing the complexities of advanced and chronic disease. A longitudinal, observational, noninterventional study was carried out in five Italian regions from May 2017 to November 2018. Patients who accessed the palliative care networks were monitored for 12 months. Sociodemographic, clinical, and symptom information was collected with several tools, including the Necesidades Paliativas CCOMS-ICO (NECPAL) tool, the Edmonton Symptom Assessment System (ESAS), and interRAI Palliative Care (interRAI-PC). There were 1013 patients in the study. The majority (51.7%) were recruited at home palliative care units. Cancer was the most frequent diagnosis (85.4%), and most patients had at least one comorbidity (58.8%). Cancer patients reported emotional stress with severe symptoms (38.7% vs. 24.3% in noncancer patients; p = 0.001) and were less likely to have clinical frailty (13.3% vs. 43.9%; p < 0.001). Our study confirms that many patients face the last few months of life with comorbidities or extreme frailty. This study contributes to increasing the general knowledge on palliative care needs in a high-income country.
Background: Pancreatic cancer primarily affects older adults and is associated with a high morbidity and mortality. Identifying frail patients with advanced pancreatic cancer (APC) helps to mitigate the risks of chemotherapy (CT). The modified Frailty Index (mFI) is an 11-point deficit measure used to identify frail patients. Although validated in surgical fields, it has not been assessed in an APC population.
Methods: A retrospective cohort study evaluated consecutive patients, aged =65 years, diagnosed with APC from 2011 to 2016 and treated with first line palliative-intent CT. mFI was categorized as: 0, 1, 2 and = 3. Descriptive analysis was completed comparing patient characteristics, CT toxicity, response to treatment, and overall survival (OS) by mFI score.
Results: 87 patients with APC received palliative CT. Median age was 71 (65–88), 54% male. A mFI score of 0, 1, 2, and = 3 occurred for 20 (23%), 28 (32.2%), 25 (28.7%) and 14 (16.1%) patients respectively. Patients with mFI scores of 0–1 were more likely to receive: 5-fluorouracil, irinotecan and oxaliplatin. CT toxicity, emergency room (ED) and urgent cancer clinic (UCC) presentation, and hospitalization length did not differ by mFI. Longer OS was associated with better ECOG and receipt of combination CT.
Conclusion: This is the first assessment of the mFI in an APC population receiving CT. The mFI score did not correlate with toxicity, ED/UCC visits, hospitalization length or OS. Ongoing assessment of tools that accurately identify frailty in patients with APC is critical to help better select candidates for aggressive CT.
BACKGROUND: The COVID-19 pandemic has placed unprecedented strain on health-care systems. Frailty is being used in clinical decision making for patients with COVID-19, yet the prevalence and effect of frailty in people with COVID-19 is not known. In the COVID-19 in Older PEople (COPE) study we aimed to establish the prevalence of frailty in patients with COVID-19 who were admitted to hospital and investigate its association with mortality and duration of hospital stay.
METHODS: This was an observational cohort study conducted at ten hospitals in the UK and one in Italy. All adults ((=18 years) admitted to participating hospitals with COVID-19 were included. Patients with incomplete hospital records were excluded. The study analysed routinely generated hospital data for patients with COVID-19. Frailty was assessed by specialist COVID-19 teams using the clinical frailty scale (CFS) and patients were grouped according to their score (1-2=fit; 3-4=vulnerable, but not frail; 5-6=initial signs of frailty but with some degree of independence; and 7-9=severe or very severe frailty). The primary outcome was in-hospital mortality (time from hospital admission to mortality and day-7 mortality).
FINDINGS: Between Feb 27, and April 28, 2020, we enrolled 1564 patients with COVID-19. The median age was 74 years (IQR 61-83); 903 (57·7%) were men and 661 (42·3%) were women; 425 (27·2%) had died at data cutoff (April 28, 2020). 772 (49·4%) were classed as frail (CFS 5-8) and 27 (1·7%) were classed as terminally ill (CFS 9). Compared with CFS 1-2, the adjusted hazard ratios for time from hospital admission to death were 1·55 (95% CI 1·00-2·41) for CFS 3-4, 1·83 (1·15-2·91) for CFS 5-6, and 2·39 (1·50-3·81) for CFS 7-9, and adjusted odds ratios for day-7 mortality were 1·22 (95% CI 0·63-2·38) for CFS 3-4, 1·62 (0·81-3·26) for CFS 5-6, and 3·12 (1·56-6·24) for CFS 7-9.
INTERPRETATION: In a large population of patients admitted to hospital with COVID-19, disease outcomes were better predicted by frailty than either age or comorbidity. Our results support the use of CFS to inform decision making about medical care in adult patients admitted to hospital with COVID-19.
BACKGROUND: Coronavirus disease 2019 (COVID-19) has a substantial mortality risk with increased rates in the elderly. We hypothesized that age is not sufficient, and that frailty measured by preadmission Palliative Performance Scale would be a predictor of outcomes. Improved ability to identify high-risk patients will improve clinicians' ability to provide appropriate palliative care, including engaging in shared decision-making about life-sustaining therapies.
AIM: To evaluate whether preadmission Palliative Performance Scale predicts mortality in hospitalized patients with COVID-19.
DESIGN: Retrospective observational cohort study of patients admitted with COVID-19. Palliative Performance Scale was calculated from the chart. Using logistic regression, Palliative Performance Scale was assessed as a predictor of mortality controlling for demographics, comorbidities, palliative care measures and socioeconomic status.
SETTING/PARTICIPANTS: Patients older than 18 years of age admitted with COVID-19 to a single urban public hospital in New Jersey, USA.
RESULTS: Of 443 admitted patients, we determined the Palliative Performance Scale score for 374. Overall mortality was 31% and 81% in intubated patients. In all, 36% (134) of patients had a low Palliative Performance Scale score. Compared with patients with a high score, patients with a low score were more likely to die, have do not intubate orders and be discharged to a facility. Palliative Performance Scale independently predicts mortality (odds ratio 2.89; 95% confidence interval 1.42-5.85).
CONCLUSIONS: Preadmission Palliative Performance Scale independently predicts mortality in patients hospitalized with COVID-19. Improved predictors of mortality can help clinicians caring for patients with COVID-19 to discuss prognosis and provide appropriate palliative care including decisions about life-sustaining therapy.
There are many additional considerations when treating older adults with cancer, especially in the context of palliative care. Currently, radiation therapy is underutilised in some countries and disease sites, but there is also evidence of unnecessary treatment in other contexts. Making rational treatment decisions for older adults necessitates an underlying appraisal of the person's physiological reserve capacity. This is termed 'frailty', and there is considerable heterogeneity in its clinical presentation, from patients who are relatively robust and suitable for standard treatment, to those who are frail and perhaps require a different approach. Frailty assessment also presents an important opportunity for intervention, when followed by Comprehensive Geriatric Assessment (CGA) in those who require it. Generally, a two-step approach, with a short initial screening, followed by CGA, is advocated in geriatric oncology guidelines. This has the potential to optimise care of the older person, and may also reverse or slow the development of frailty. It therefore has an important impact on the patient's quality of life, which is especially valued in the context of palliative care. Frailty assessment also allows a more informed discussion of treatment outcomes and a shared decision-making approach. With regards to the radiotherapy regimen itself, there are many adaptations that can better facilitate the older person, from positioning and immobilisation, to treatment prescriptions. Treatment courses should be as short as possible and take into account the older person's unique circumstances. The additional burden of travel to treatment for the patient, caregiver or family/support network should also be considered. Reducing treatments to single fractions may be appropriate, or alternatively, hypofractionated regimens. In order to enhance care and meet the demands of a rapidly ageing population, future radiation oncology professionals require education on the basic principles of geriatric medicine, as many aspects remain poorly understood.
Aging adults (65+) with disability are especially vulnerable to coronavirus disease 2019 (COVID-19), and on contracting, they are a cohort most likely to require palliative care. Therefore, it is very important that health services-particularly health services providing palliative care-are proximately available. Treating the Melbourne metropolitan area as a case study, a spatial analysis was conducted to clarify priority areas with a significantly high percentage and number of aging adults (65+) with disability and high barriers to accessing primary health services. Afterward, travel times from priority areas to palliative medicine and hospital services were calculated. The geographic dispersion of areas with people vulnerable to COVID-19 with poor access to palliative care and health services is clarified. Unique methods of health service delivery are required to ensure that vulnerable populations in underserviced metropolitan areas receive prompt and adequate care. The spatial methodology used can be implemented in different contexts to support evidence-based COVID-19 and pandemic palliative care service decisions.
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: Although advance care planning discussions are increasingly accepted worldwide, their ideal timing is uncertain and cultural factors may pertain.
Aim: To evaluate timing and factors affecting initiation of advance care planning discussions for adult patients in Japan and Taiwan.
Design: Mixed-methods questionnaire survey to quantitatively determine percentages of patients willing to initiate advance care planning discussions at four stages of illness trajectory ranging from healthy to undeniably ill, and to identify qualitative perceptions underlying preferred timing.
Setting/participants: Patients aged 40–75 years visiting outpatient departments at four Japanese and two Taiwanese hospitals were randomly recruited.
Results: Overall (of 700 respondents), 72% (of 365) in Japan and 84% (of 335) in Taiwan (p < 0.001) accepted discussion before illness. In Japan, factors associated with willingness before illness were younger age and rejection of life-sustaining treatments; in Taiwan, older age, stronger social support, and rejection of life-sustaining treatments. Four main categories of attitudes were extracted: the most common welcomed discussion as a wise precaution, responses in this first category outnumbered preference for postponement of discussion until imminent end of life, acceptance of the universal inevitability of death, and preference for discussion at healthcare providers’ initiative.
Conclusion: The majority of patients are willing to begin discussion before their health is severely compromised; about one out of five patients are unwilling to begin until clearly facing death. To promote advance care planning, healthcare providers must be mindful of patients’ preferences and factors associated with acceptance and reluctance to initiate advance care planning.
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.