Le Phare Enfants et Familles (Phare) est un organisme à but non lucratif qui oeuvre en milieu communautaire depuis vingt ans. Pour tenter d'approfondir les connaissances portant sur la prestation des soins palliatifs et de fin de vie (SPFV) en milieu communautaire, nous avons analysé notre expérience d'équipe. Parmi nos pratiques régulières, nous tenons une rencontre de débreffage à froid, c'est-à-dire de quelques jours à quelques semaines après chaque décès à la maison de soins palliatifs (MSP). Nous avons conduit 23 rencontres de débreffage au cours des quatre dernières années. Nous avons procédé à une analyse globale des thèmes abordés lors de chaque réunion, afin d'examiner l'expérience collective de l'équipe. Les thèmes principaux issus des rencontres des quatre dernières années ont été analysés et regroupés selon les défis et les succès rapportés par les participants.
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Le père d'Olivia, 10 ans, est malade. Atteint d'une maladie neurodégénérative, il ne peut plus monter les escaliers et est installé en bas, jusqu'au moment où il devra être hospitalisé et où il décidera de ne plus lutter. A travers le regard d'Olivia, heureuse d'être entourée de tous les siens et de son chat, entre les larmes et les rires, nous suivons le quotidien de la famille confrontée à la maladie et à la fin de vie.
CONTEXT: Most of the 20,000 US children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand location of death preferences for children and their families.
OBJECTIVE: To better understand location of death preferences in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children (0-18years).
METHODS: We searched English articles in PubMed, PsycINFO, and Embase published 2000-2018 for articles related to parental, child/adolescent, and provider preference for death location and articles that correlated death location with bereavement or quality of life outcomes.
RESULTS: The search results (n=877 articles and n=58 abstracts of interest) were reviewed and 34 relevant articles were identified. Parent, child, and provider preferences, bereavement outcomes, and associated factors all point to some preference for home death. These findings should be interpreted with several caveats: 1) Many studies are small and prone to selection bias, 2) Not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) Studies of bereavement outcomes are lacking.
CONCLUSION: Adequate resources are needed to ensure children can die in their chosen location - be that home, hospital, or free-standing hospice. This review highlights research areas needed to better understand death location preference and programs and policies that will support home death for those that desire it.
Introduction: The aim of our study was to investigate challenges faced by emergency physicians (EPs) who provide prehospital emergency care to patients with advanced incurable diseases and family caregivers in their familiar home environment.
Methods: Qualitative study using semistructured interviews with open-ended questions to collect data from 24 EPs. Data were analyzed using qualitative content analysis.
Results: We identified nine categories of challenges: structural conditions of prehospital emergency care, medical documentation and orders, finding optimal patient-centered therapy, uncertainty about legal consequences, challenges at the individual (EP) level, challenges at the emergency team level, family caregiver's emotions, coping and understanding of patient's illness, patient's wishes, coping and understanding of patient's illness, and social, cultural, and religious background of patients and families. EPs strengthened that the integrations of specialized prehospital palliative care services improved emergency care by providing resources to patients and family caregivers, enhancing the quality and availability of medical documentation and accessibility of aftercare in emergencies. Areas of improvement that were identified were to promote emergency physicians' knowledge and skills in palliative care, communication, and family caregiver support by education and training. Furthermore, structures for better care on-site, thorough medical documentation, and specialized palliative care emergency facilities in hospital and prehospital care were requested.
Conclusion: Prehospital emergency care in patients with advanced incurable diseases in their familiar home environment may be improved by training EPs in palliative care, communication, and caregiver support competences. Results underline the importance of collaborative specialized palliative care and prehospital emergency care.
Background: Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home.
Methods: This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state.
Discussion: The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process.
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.
BACKGROUND: Achieving the preference of place of care and place of death of patients is a quality marker in palliative care. From a recent study, around 30% of the Hong Kong general population wished to die at home. In our study, residential care home for the elderly (RCHE) was also considered as home. The objective of this study was to investigate the preference of place of care and place of death of terminal cancer patients who received palliative care service in Hong Kong. We would also investigate the facilitating and obstructing factors for home death. Common factors associating with the preference of home death would also be examined.
METHODS: A hospital-based cross-sectional questionnaire survey was conducted in a local palliative care unit from 3 December 2018 to 10 January 2019. Univariate analysis was performed to evaluate factors associated with the preference of home death.
RESULTS: Total 72 patients were recruited. Overall, 22 (30.6%) patients wished to die at home ideally. After concerning reality and different choices, only 13 (18.1%) patients preferred home death. The most common chosen facilitating factor for home death was to provide support to carers (12 patients, 92.3%). Five patients (38.5%) chose it as the most significant facilitating factor for home death. It was inconclusive for the most common chosen and most significant obstructing factor for home death. There were no statistically significant factors found to be associated with the preference of home death.
CONCLUSIONS: The preference of home death of terminal cancer patients in Hong Kong is low. We hope that understanding more of the obstructing and relieving factors for home death can facilitate home death in the future.
Background: Home care workers (HCWs)-including home health aides, personal care aides, and other direct care workers-provide functional and other essential support that allows older, disabled, and seriously ill people to live at home. As a growing number of patients are aging and dying at home, HCWs are increasingly providing care at the end of life (EOL). Although prior qualitative studies have shown that patient death is an impactful and challenging experience for HCWs, the majority of HCWs receive almost no training on EOL issues.
Objective: The goal of this scoping review is to identify intervention studies describing training of HCWs in EOL issues to map types of training and to assess the degree to which existing efforts address HCW health and well-being.
Design: Our scoping review covered three databases and focused on articles published in English since 2000.
Results: Of the 393 articles screened, 26 underwent full-text review and 6 met inclusion criteria. Only one article discussed training designed for and implemented with HCWs exclusively. Other trainings simultaneously targeted multiple kinds of workers. Supporting HCWs in reducing their stress and improving their coping skills was substantially addressed in only one article, although HCWs' emotional needs were addressed less centrally in several others.
Conclusion: Our findings suggest that there is a paucity of EOL training interventions tailored specifically to the experiences and positioning of HCWs. We recommend that future intervention studies address the multiple facets of HCWs' stress related to patient death to improve EOL care in the home.
BACKGROUND: No study has yet been performed on the importance of the rate of pure "attended deaths at home," excluding examined deaths subjected to a postmortem examination. Therefore, in the present study, we investigated actual state of pure "attended deaths at home," in order to provide reference data for the future development of end-of-life care at home.
METHODS: We performed a detailed survey in Yokohama City according to the type of death, age, and underlying cause of death in cases of home deaths, based on the detailed version of the Vital Statistics Survey Death Forms. Then, we divided deaths occurring in each municipality in Kanagawa Prefecture into two categories: "examined deaths" or "attended deaths," which were also stratified by the place of death, based on the Vital Statistics, and data on number of death cases subjected to postmortem examination from the Kanagawa Prefectural Police Headquarters.
RESULTS: In 2013, the survey in Yokohama City showed large differences in age distribution and cause of death between examined and attended deaths. In 2014, home deaths accounted for 15.7% of all deaths in the prefecture, whereas the overall proportion of attended deaths at home was 6.9%.
CONCLUSIONS: We should utilize the rate of pure "attended deaths at home" for objective outcome indicator.
Context: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting.
Objective: To identify modifiable factors associated with the comfort of dementia patients dying at home and families’ satisfaction with care.
Methods: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin<35g/L, enteral feeding or pneumonia were recruited from a palliative homecare programme. Independent variables included demographics, medical information and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients’ comfort while the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers’ satisfaction two months post-bereavement. Gamma regression identified factors independently associated with comfort and satisfaction.
Results: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [ß(95% CI)=1.823(0.660 – 2.986), p=0.002] was positively associated with comfort, while opioid prescription (89.6%) [ß(95% CI)=-2.179(-4.107- -0.251), p=0.027] and >1 antibiotic courses used in the last 2 weeks of life (77.2%) [ß(95% CI)=-1.968(-3.196 – -0.740), p=0.002] were negatively associated. Independent factors associated with families’ satisfaction with care were comfort [ß(95% CI)=0.149(0.012 – 0.286), p=0.033] and honouring of medical intervention preferences (96.0%) [ß(95% CI)=3.969(1.485 – 6.453), p=0.002].
Conclusion: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honouring medical intervention preferences, such as those with palliative intent associated with patients’ comfort determined families’ satisfaction with care.
BACKGROUND: Only a small number of patients have utilized the home-based end-of-life care service in Shanghai that has been offered since 2012. This study explores how home-based end-of-life care is delivered in community health service centers in Shanghai and examines the difficulties in the delivery of the care.
METHODS: This was a qualitative study in which data were collected from interviews and analyzed using qualitative content analysis. Nineteen health care providers with experience in delivering home-based end-of-life care in 12 community health service centers were recruited. The interviews were conducted between August 2018 and February 2019.
RESULTS: Four themes emerged from the interviews: (i) Patients under home-based end-of-life care: Patients receiving the care were cancer patients with less than 1 year of life expectancy. The criteria for patients were broad. (ii) Service structure: The service was delivered regularly by the physicians and nurses using the approaches of home visits and/or telephone follow-ups. (iii) Service process: The service consisted of multiple components, including monitoring the patient's condition, managing the patient's symptoms, giving daily care instructions, performing nursing procedures, and giving psychological support. However, most of the care focused on monitoring the patients and managing their physical discomfort. (iv) Difficulties in delivering care: Being unable to provide the service and feeling powerless when facing psycho-spiritual problems were the two major difficulties. Three factors contributed to the suspension of the service: The gap between the service and the needs of the patients, a lack of patients, and low work motivation. The demand that the truth be concealed from the families and their attitude of avoiding talking about death were the key factors of the failure of psycho-spiritual care.
CONCLUSIONS: Several issues should be addressed before the service can be further developed, including fully understanding the needs and preferences of local patients and their families, securing more financial support and a better supply of drugs, delivering better training for staff, and ensuring greater rewards for individuals and institutions providing the service.
Comment les associations d'accompagnement peuvent-elles répondre aux demandes de conventionnement faites par les Ehpad, puis mettre en oeuvre et pérénniser le partenariat signé et co-construit ? Ces associations sont-elles prêtes à relever le défi de l'accompagnement au domicile des personnes âgées seules et vulnérables qui vont être de plus en plus nombreuses dans les années à venir ?
Background: The World Health Assembly urges members to build palliative care (PC) capacity as an ethical imperative. Nurses provide PC services in a variety of settings, including the home and may be the only health care professional able to access some disparate populations. Identifying current nursing services, resources, and satisfaction and barriers to nursing practice are essential to build global PC capacity.
Objective: To globally examine home health care nurses' practice, satisfaction, and barriers, regarding existing palliative home care provision.
Design: Needs assessment survey.
Setting/Subjects: Five hundred thirty-two home health care nurses in 29 countries.
Measurements: A needs assessment, developed through literature review and cognitive interviewing.
Results: Nurses from developing countries performed more duties compared with those from high-income countries, suggesting a lack of resources in developing countries. Significant barriers to providing home care exist: personnel shortages, lack of funding and policies, poor access to end-of-life or hospice services, and decreased community awareness of services provided. Respondents identified lack of time, funding, and coverages as primary educational barriers. In-person local meetings and online courses were suggested as strategies to promote learning.
Conclusions: It is imperative that home health care nurses have adequate resources to build PC capacity globally, which is so desperately needed. Nurses must be up to date on current evidence and practice within an evidence-based PC framework. Health care policy to increase necessary resources and the development of a multifaceted intervention to facilitate education about PC is indicated to build global capacity.
While care is often either implicitly or explicitly conceived in terms of "doing good," the morality of care is more complex than this association would suggest. Nursing home care, in particular, is both characterized by institutional demands for regulation and standardization, and the subjective practices of care workers. These can represent different notions of good care. Based on ethnographic fieldwork among people with dementia, family members and professional caregivers in nursing homes in the Netherlands, I present a case of a resident's sudden death, which revealed a fallacy of care. A fallacy of care refers to an uncritical approach to the "good" in care that overlooks its potentially harmful outcomes. I show that recognizing such fallacies is not only a matter of recognizing the "bad" that may result from "good" care, but of the friction between multiple "goods." In this case, protocols and care practices advocate different notions of the good that coexist, compete, and exclude one another, producing moral distress and forming hierarchical, if contested relations.
Objectives: To explore the influence of hospital and patient characteristics on deaths at home among inpatients facing impending death.
Method: In this historical cohort study, 95,626 inpatients facing impending death from 362 hospitals in 2011 were recruited. The dependent variable was the place of death. The independent variables were the characteristics of the hospitals and the patients. A two-level hierarchical generalized linear model was used.
Results: In total, 41.06% of subjects died at home. The hospital characteristics contributed to 29.25% of the total variation of the place of death. Private hospitals (odds ratio [OR] = 1.32, 95% confidence interval [CI] = 1.00-1.75), patients >65 years old (OR = 1.48, 95% CI. = 1.42-1.54), married (OR = 3.15, 95% CI. = 2.93-3.40) or widowed (OR = 3.39, 95% CI. = 3.12-3.67), from near-poor households (OR = 5.16, 95% CI. = 4.57-5.84), having diabetes mellitus (OR = 1.79, 95% CI. = 1.65-1.94), and living in a subcounty (OR = 2.27, 95% CI. = 2.16-2.38) were all risk factors for a death at home.
Conclusion: Both hospital and patient characteristics have an effect of deaths at home among inpatients facing impending death. The value of the inpatient mortality rate as a major index of hospital accreditation should be interpreted intrinsically with the rate of deaths at home.
OBJECTIVES: To facilitate care at the end of life at home, support from family caregivers is crucial. A substantial number of these family caregivers also work. Work in relation to care for terminally ill patients has received limited attention. To better understand the context in which these family caregivers provide care, we provide a detailed overview of the situation and experiences of family caregivers of terminally ill patients at home, with and without paid work.
METHODS: We used a pooled cross-section of data from the Dutch Informal Care Study, collected in 2014 and 2016. All working and non-working family caregivers of terminally ill patients at home were included (n=292).
RESULTS: Working family caregivers reported more care tasks, and shared care tasks with others more often than non-working caregivers. No differences between working and non-working caregivers were found in negative and positive experiences. Non-working caregivers provided care more often because the care recipient wanted to be helped by them or because there was no one else available than working caregivers. About 70% of the working caregivers were able to combine work and family caregiving successfully.
CONCLUSIONS: Working and non-working family caregivers of terminally ill patients at home have similar burden and positive experiences. Working family caregivers vary in their ability to combine work and care. Although the majority of working family caregivers successfully combine work and care, a substantial number struggle and need more support with care tasks at home or responsibilities at work.
Self-expandable metallic stent (SEMS) is a preferred option to relieve dysphagia and to palliate patients with incurable esophageal or gastro-esophageal junction (GEJ) cancer. Health Related Quality of Life (QoL) represents a clinically relevant outcome measure in research focused on palliation of patients with advanced GI cancer. In this context, home visits by a nurse carry the potential to offer important advantages. Eighty patients with incurable esophageal or GEJ cancer were randomized to either standard follow up or to an intervention containing regular home visits by a nurse. The primary outcome variable QoL was assessed by EORTC QLQ-C30 and OES-18 before insertion of SEMS, and at 2, 7 and 12 weeks thereafter. Secondary outcomes were; need for re-interventions, number of patients receiving palliative oncological therapy and overall survival. Sixty-six males and 13 females, with a median age of 71, were included. Self-reported overall QoL was significantly higher in the intervention group (P = 0.03). The organ specific module OES-18 revealed a significant reduction in dysphagia by the intervention (P = 0.03) as well as fewer eating disabilities (P = 0.04). No differences were observed in secondary outcomes except for overall survival, where the median survival was increased from 114 to 183 days by the active intervention (P = 0.02). Home visits by a nurse seem to play an important palliative role after placement of SEMS in patients with incurable esophageal or GEJ cancer by improving QoL and may carry the potential to increase overall survival.
BACKGROUND: Little is known regarding healthcare for cancer patients treated mainly at home during the month before they die. The aim of this study was to provide information on how they were treated and what were their causes of death.
METHODS: This population-based observational study analysing information obtained from the French national healthcare data system (SNDS) included adult health insurance beneficiaries treated for cancer who died in 2015 after having spent at least 25 of their last 30 days at home.
RESULTS: Among the cancer patients who died in 2015, 25,463 (20%) were included [mean age (±SD) 74±13.2 years, men 62%]; 54% of them died at home. They were slightly older (75 vs. 73 years) than those who died in hospital, had less frequently received hospital palliative care during the year preceding their deaths (19% vs. 41%) and had less often used medical transport (41% vs. 73%) to an emergency department (8% vs. 62%), to hospital-based (11% vs. 17%) or community-based (16% vs. 12%) chemotherapy, to a general practitioner (73% vs. 78%) or to a community-based nursing service (63% vs. 73%). However, when they consulted a general practitioner (median 3 visits vs. 2) or a nurse (median 22 nursing procedures vs. 10) during their last month of life, visits were more frequent. The leading cause of death was tumour, which represented 69% of deaths at home vs. 74% of deaths in hospital.
CONCLUSIONS: In France, home management during the last month of life is uncommon and even when it is occurs, in one out of two cases patients pass away in a hospital setting. This study is an interrogation on medical choices, given the wish of many of the French to die at home and placing their choices in an international perspective.
BACKGROUND: Advanced Parkinson's disease (PD) is a multidimensional neurodegenerative condition with motor and non-motor symptoms contributing to increasing disability and decreasing quality of life. As the disease progresses, patients may become homebound and estranged from neurological care, with dire consequences. We describe the increasing epidemiologic burden of and individual risks faced by patients with palliative-stage PD and their caregivers.
METHODS: With the aim of mitigating these risks, we designed and iterated two models of interdisciplinary home visits to maintain continuity of care and illuminate the unmet needs and barriers to care faced by this population. We describe both models in detail, with data on feasibility and patient-centered outcomes achieved in the initial model, and baseline characteristics of participants in the ongoing expanded model. Finally, we illustrate the scope and common themes of such palliative care-informed home visits with two cases.
RESULTS: The pilot model involved over 380 visits with 109 individual patients. Among those patients, PD severity worsened by nearly 12 points annually on the Unified Parkinson's Disease Rating Scale (UPDRS), without a corresponding decline in quality of life. In an ongoing study of the second iteration of the model, 52 patient-caregiver dyads have completed their initial visit, with 44% bearing a diagnosis of dementia and the majority requiring an assistive device or being bedbound. Two cases highlight the critical importance of thorough medication reconciliation and home safety assessment in the comprehensive evaluation and management of such patients.
CONCLUSIONS: As our population ages, therapies increase, and the number of individuals living with advanced PD and related disorders grows, so too does the imperative to recognize and address the palliative care needs of such patients and families. For many, home may be a viable, and perhaps optimal, site for this care.
In Sweden, patients in early palliative stages of illness are cared for in primary care and often offered home care. Many are older and at risk for malnutrition, but little is known about their symptom burden and nutritional problems. This cross-sectional study divided older patients in home care into those with and without risk for malnutrition and compared symptom burden in the 2 groups. Participants were patients in Stockholm County (n = 121) in early palliative stages of disease cared for at home by primary care professionals from 10 health-care centers. The Mini Nutritional Assessment (MNA) was used to identify risk for malnutrition. Symptoms and/or nutritional status in patients with and without risk were assessed with the Functional Assessment of Anorexia/Cachexia Therapy (FAACT), Patient-Generated Subjective Global Assessment Short Form (PG-SGA), and Edmonton Symptom Assessment System (ESAS). Forty-two percent of the patients were at risk for malnutrition (MNA). Appetite (P = .012), tiredness (P = .003), and anxiety (P = .008) were worse in these patients than in those without risk (ESAS; significance level, P = .015). Patients at risk were also more concerned about how thin they looked (P = .006), agreed more strongly that their family or friends were pressuring them to eat (P = .000; FAACT; significance level, P = .029), had a higher symptom burden (P = .005), had lower physical activity (P = .000), and more lost weight over time (P = .032; PG-SGA; significance level, P = .040). This study adds a more detailed picture of the symptom burden in older patients at risk for malnutrition. Such information is needed to identify risk for malnutrition earlier and improve patients’ health.