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.
BACKGROUND: Advanced care planning (ACP) is an essential component of quality palliative care in nursing homes. Despite the benefits associated with ACP in nursing homes, completion rates are low. Staff members' knowledge and attitudes toward ACP were found to be main determinants of ACP completion.
AIMS: To assess nursing home staff members' attitudes towards ACP and their association to different types of knowledge.
METHODS: A convenience sample of 138 nursing home staff members (69% female, 53% non-Jewish, 46% nurses) who reported having heard the terms advanced directives and durable power of attorney completed a structured questionnaire assessing attitudes toward ACP, subjective knowledge, and three types of objective knowledge (declarative, legal and procedural) regarding ACP, as well as socio-demographic and professional factors.
RESULTS: Participants expressed positive attitudes toward formal and informal aspect of ACP, although their subjective and objective knowledge in the topic was moderate. Hierarchical regression analyses revealed that the three dimensions of objective knowledge improved significantly the participants' attitude scores.
DISCUSSION: There is a need to integrate different types of knowledge in educational programs provided to nursing home staff members to improve their involvement in ACP initiatives with residents and family members.
Aim: To assess factors associated with home deaths in non-cancer elderly patients receiving home medical care by general practitioners.
Methods: A retrospective observational study was carried out in a primary care clinic in Tokyo. Patients who received home medical care and died between January 2010 and September 2017 were included in the analysis. Data from 119 non-cancer patients aged =65 years were collected between September and December 2017 using medical records. Patient characteristics, comorbidities, cognitive impairment, duration of home medical care, number of household members, patient's relationship with their primary caregiver, use of home care nursing services, and patient and family preference on place of death were obtained as independent variables. The main outcome was the place of death.
Results: Among the analyzed patients, 59.7% had impaired cognition and 47.1% expressed a preference for place of death. Patient–family congruence on the preferred place of death was 57.1% (kappa coefficient 0.39). Multivariate analysis showed that family preference for home death (adjusted odds ratio [aOR] 137.0, 95% CI 13.0–1443.8), cognitive impairment (aOR 4.26, 95% CI 1.12–16.2), death by non-infectious diseases (aOR 13.7, 95% CI 2.50–74.7) and living with more than two family members (aOR 4.79, 95%CI 1.38–16.7) were significantly associated with home deaths.
Conclusions: Family preference, rather than patient preference, was a facilitating factor for home death among non-cancer older patients receiving home medical care. As many patients receiving home medical care have impaired cognition, early end-of-life discussions with patients and decision-making support for caregivers should be promoted to realize their preferences on place of death.
En 2009, au Portugal, la fondation Calouste Gulbenkian met en place un programme de soins palliatifs à domicile sur le plateau mirandais, dans la région rurale de Tras-os-Montes. Ce projet a inspiré à la journaliste ce livre en deux parties : une réflexion à la fois intime et universelle, aux accents poétiques et philosophiques, sur la fin de vie, suivie des portraits d'individus mourants.
Background: Few studies have estimated planned home deaths compared to actual place of death in a general population or the longitudinal course of home nursing services and associations with place of death. We aimed to investigate trajectories of nursing services, potentially planned home deaths regardless of place of death; and associations of place of death with potentially planned home deaths and nursing service trajectories, by analyzing data from the last 90 days of life.
Methods: A retrospective longitudinal study with data from the Norwegian Cause of Death Registry and National registry for statistics on municipal healthcare services included all community-dwelling people who died in Norway 2012–2013 (n = 53,396). We used a group-based trajectory model to identify joint trajectories of home nursing (hours per week) and probability of a skilled nursing facility (SNF) stay, each of the 13 weeks leading up to death. An algorithm estimated potentially planned home deaths. We used a multinomial logistic regression model to estimate associations of place of death with potentially planned home deaths, trajectories of home nursing and short-term SNF.
Results: We identified four home nursing service trajectories: no (46.5%), accelerating (7.6%), decreasing (22.1%), and high (23.5%) home nursing; and four trajectories of the probability of a SNF stay: low (69.0%), intermediate (6.7%), escalating (15.9%), and increasing (8.4%) SNF. An estimated 24.0% of all deaths were potentially planned home deaths, of which a third occurred at home. Only high home nursing was associated with increased likelihood of a home death (adjusted relative risk ratio (aRRR) 1.29; CI 1.21–1.38). Following any trajectory with elevated probability of a SNF stay reduced the likelihood of a home death.
Conclusions: We estimated few potentially planned home deaths. Trajectories of home nursing hours and probability of SNF stays indicated possible effective palliative home nursing for some, but also missed opportunities of staying at home longer at the end-of-life. Continuity of care seems to be an important factor in palliative home care and home death.
Objective: This study aimed to clarify visiting nurses' perspectives on critical practices to ensure they could advocate for patients who prefer to die at home.
Methods: Sixteen nurses, working at home-visit nursing agencies in Japan, participated in this study. Data were generated by interviews with the nurses and participant observations from nursing home-visits for six end-of-life cancer patients and were analyzed using content analysis.
Results: Five themes emerged: (1) nursing assessment, (2) support for comfortable daily life of the patient and their family, (3) advocating for the patient's views about continuing homecare until death, (4) supporting the patient's preparedness for death, and (5) coordination with other health professionals and related facilities for a comfortable environment for the patient. In addition, the nurses sometimes used humorous responses to death-related work to change the patient's melancholy thoughts.
Conclusion: The present study found that the participants advocated for the patient's views about continuing homecare until death while coordinating views between the patient and their family; they further supported the patient's daily life while helping them prepare for death to achieve their wish for death at home. In addition, our study uncovered the visiting nurses' unconscious practical wisdom of using humorous responses to death-related work to alleviate the patients' feelings of hopelessness. To develop practical wisdom for using humor effectively in end-of-life care, nurses need to verbalize unconscious practices, and accumulate empirical knowledge about nursing interventions using humor, including cultural attitudes, through case study analysis.
La relation entre les personnes soignées à domicile, leur entourage et les professionnels est ponctuée d'inconnu, d'inédit, de surprise. Nous vous soumettons quelques éléments de réflexion, en nous appuyant sur des situations concrètes, afin de décrypter "les comportements", identifier les enjeux possibles.
OBJECTIVES: The aim of this study was to investigate factors predictive for 'death at home' for patients admitted to an advanced medical home care unit in Stockholm, Sweden, with a focus on possible gender differences. In addition, place of death in relation to the patient's wishes was studied.
METHOD: A retrospective review of medical records of all 456 deceased patients, 233 men and 223 women, admitted to the unit during 2017 was performed. Data on age, diagnosis, living conditions, Swedish language skills, desired place of death (if stated) and place of death were retrieved from the patients' charts.
RESULTS: A total of 114 of 456 patients died at home (25%). The probability of 'death at home' was independent of gender, age, diagnosis, living conditions and Swedish language skills. In a binary logistic regression model, the only factor significantly associated with death at home was 'the wish to die at home' (p<0.001). In the study population, 154 patients (34%) had expressed a preferred place of death, 116 (75%) wanted to die at home and 38 (25%) wanted to die in hospice. Of all patients who expressed a preferred place of death, 80% (n=123) had their wishes fulfilled and there were no differences between the sexes.
CONCLUSION: This study indicates equal opportunities regarding the possibility to die at home for patients admitted to advanced medical home care. It emphasises the importance of asking patients where they want to be at the end of life, as it was the foremost prognostic factor for place of death.
Several studies have highlighted the significant role of families in end-of-life care. Carers' well-being may depend on how they experience the care and support provided to their loved ones. This study was conducted to investigate family caregivers' assessment of specialized end-of-life care in a sample of 119 close family members in Iceland. The response rate was 58.8% (n = 70). Furthermore, the aim was to assess the psychometric characteristics of the Icelandic version of Family Assessment of Treatment at the End of Life (FATE). Descriptive statistics were used to describe the characteristics of the data. Results indicate that good communication and understanding of all parties concerned are the foundation for family caregivers' satisfaction with end-of-life care. Participants were generally satisfied with the care provided, whereas some important aspects of care were rated as excellent. Evaluation of management of symptoms reported in this study should be given specific attention in future studies considering its unsatisfactory outcomes. Nurses need to be aware of the impact that physical suffering of the patient might have on the family caregivers. The Icelandic version of the Family Assessment of Treatment at the End of Life instrument is a psychometrically sound instrument useful for measuring caregivers' satisfaction with service provided at the end of life, although modifications would improve the instrument for use on this population.
Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia.
Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia.
Design: Narrative synthesis of qualitative and quantitative data.
Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017.
Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’.
Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.
AIM: This study aimed to develop a "family caregiver needs-assessment scale for end-of-life care for senility at home" (FADE) and examine its reliability and validity.
METHOD: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants' basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach's alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity.
RESULTS: In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: "Needs for adaptation to senility bereavement" and "Needs for essential skills in supporting a dignified death by senility." The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker-Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach's alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259-0.427 (p<0.001).
CONCLUSIONS: The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers' anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace.
Objectives: To assess the association between receiving the certified care workers’ home care service, which is provided by non-medical professionals prior to a patients’ death and the probability of a home death.
Design: Observational research using the full-time translated number of certified care workers providing home care service per member of the population aged 65 or above, during the year prior to patient’s death per municipality as an instrumental variable.
Setting:: The certified care workers’ home care service covered by the public long-term care insurance (LTCI) system in Japan.
articipants In total, 1 613 391 LTCI beneficiaries aged 65 or above who passed away, except by an external cause of death, between January 2010 and December 2013 were included in the analysis.
Primary outcome measures: Death at home or death at other places, including hospitals, nursing homes and clinics with beds.
Results: Out of all participants, 173 498 (10.8%) died at home. The number of patients who used the certified care workers’ home care service more than once per each month during 1, 2 or 3 months prior to the month of death numbered 213 848, 176 686 and 155 716, respectively. This was associated with an increased probability of death at home by 9.1% points (95% CI 2.9 to 15.3), 10.5% points (3.3 to 17.6) and 11.4% points (3.6 to 19.2), respectively.
Conclusions: The use of the certified care workers’ home care service prior to death was associated with the increased probability of a home death.
OBJECTIVE: While 60%-70% of people would prefer to die at home, only 14% do so. Families in a rural environment feel particularly unsupported in fulfilling this last wish of their loved one, which reflects the general shortage of health care workforce and resource allocation to institutions. The aim of this study was to describe the experience of families and nurses with extended rural palliative care to support dying at home.
DESIGN: Semistructured interviews were conducted with family members and nurses. Process data were included to describe the frequency and nature of contacts. The results were analysed using descriptive analysis.
SETTINGS: A rural town in Northern Victoria, Australia (Australian Statistical Geography Standard-Remoteness Area).
PARTICIPANTS: Ten family members and four nurses were interviewed.
MAIN OUTCOME MEASURES: Experience with the extended palliative care service and with the dying at home process.
RESULTS: All patients in the project died at home. The families were very positive about the extended palliative care; it increased their familiarity with dying, and had a positive impact on bereavement. The nurses were equally positive, but also commented on the need to debrief and on the heavy emotional toll the work takes.
CONCLUSIONS: Rural care support for dying at home can be realised. This study has demonstrated the positive impact of an end-of-life service, while at the same time pointing to concerns of the nursing staff on the suitability of the model of care. Health care workers and communities alike need to be educated and have conversations on end-of-life care.
Despite advances in the management of hematologic malignancies, a significant proportion of patients die of their disease. We used administrative databases in Ontario, Canada (between 2005 and 2013) to determine the number of days spent at home in the last 6 months of life. We studied the predictors of the median number of days at home (DAH) using quantile regression. For the 11,127 patients with hematologic malignancies who died, the median number of DAH in the last 6 months was 156 days. Patients with acute leukemias (p < .0001), women (p < .0001), and those requiring transfusions (p < .0001) spent the fewest DAH. Patients assessed by palliative care prior to their last 6 months were likely to spend more time at home (p < .0001). Providing additional supports for patients nearing the end of life, including earlier access to palliative care and continued transfusion support, may increase the likelihood that patients can die at home.
Le système de santé privilégie aujourd'hui la prise en charge de malades au domicile. Au-delà des interrogations d'ordre financier et structurel que cela implique, cela ne va pas sans questionner la notion de vulnérabilité du malade. Mais également la vulnérabilité de chacune des personnes agissant autour du malade au domicile.
[Début de l'article]
Aujourd’hui, pour des raisons de coûts, des raisons de choix, des raisons d’inclusion, des tas de raisons bien pensantes, le domicile individuel est considéré comme le lieu le plus approprié pour vivre le plus longtemps dans les meilleures conditions. On en parle souvent lorsqu’arrive le crépuscule de nos aînés. Mais il en va de même pour toute personne fragilisée par la maladie, longue et parfois avec une issue des plus défavorable. L’âge n’a rien à voir là-dedans.
Écrire un article sur ces questions de l’articulation du soin, de prendre soin, de la maladie, du domicile, de la famille… est un défi que je n’ai pas la prétention de relever. Mon expérience dans le champ du domicile, afin d’accompagner les personnes atteintes de pathologies neuro-évolutives, personnes jeunes, à rester chez elles, m’a appris une humilité sur ces questions que je souhaite entretenir. Parce que justement, comment définir l’intimité alors qu’elle est ce qu’il y a de plus singulier et de plus subjectif ? Je ne suis pas certaine d’être capable de définir la mienne. Car cette définition sera plus contextuelle que théorique. Je vais donc tenter, dans une démarche de questionnement éthique, d’approcher les différents concepts et de voir en quoi cette question du domicile nous semble insoluble alors qu’elle est simplement évidente.
Aujourd’hui la définition de la vulnérabilité comme caractéristique, voire comme catégorie, est sans cesse en évolution au sein de notre société. Car elle traverse à un moment ou à un autre chacun d’entre nous, que notre monde tourne en carré et que l’immobilisme, l’épuisement, l’individualisme entre autres restent encore des incontournables caractéristiques de notre fonctionnement sociétal…
Plus qu’une illusoire santé, voire la possibilité de guérir ou encore de prolonger la vie à tout prix, la finalité du soin pourrait se définir comme la volonté d’essayer de faire du bien à une personne malade, au moyen d’une technicité nécessaire qu’il est du devoir moral de tout soignant de maîtriser. Le bénévole d’accompagnement utilise lui aussi une certaine technicité de par la formation qu’il reçoit de son association : on peut le considérer comme une sorte de soignant. Quant au bien visé, il s’agit d’évidence du bien « médical », c’est-à-dire de celui qui concerne directement le pouvoir-être au monde de la personne et non pas un bien matériel quelconque, ce qui serait d’ailleurs beaucoup plus simple. C’est admettre que cette action convoque nécessairement l’éthique puisqu’il n’existe aucune norme, aucun code qui puisse indiquer quel est ce bien que l’on cherche à faire à la personne dont on s’occupe.
Lorsqu’il s’agit de fin de vie et de soins palliatifs apparaît clairement la vraie nature du soin : c’est une médiation qui vise à permettre à une personne malade (mal habitus : je n’habite plus bien le monde) de ne plus l’être. Un cancéreux métastatique, si on l’aide à continuer de pouvoir exister (et non seulement vivre), pourra habiter le monde comme une personne à part entière.
Mais les choses se compliquent car, si l’on y regarde de près, force est de constater qu’aucun soin en général, qu’aucune technique, ne peut s’exonérer d’une certaine impudeur et d’une exposition de l’intimité du malade…
Le maintien à domicile des personnes gravement malades et en fin de vie ainsi que des personnes âgées fragilisées va augmenter considérablement ces prochaines années. Cette évolution est liée à des causes démographiques, à l’organisation des soins, aux politiques de santé ainsi qu’à des désirs individuels. Mais finir sa vie à domicile reste un choix qui engage une solidarité intergénérationnelle, familiale et sociétale, qui relève à la fois d’un bénévolat naturel, celui des proches, et d’un bénévolat organisé, celui des associations. Cet accompagnement représente un défi pour JALMALV car le cadre et les conditions d’accompagnement ne sont pas les mêmes qu’en institution. Ce bénévolat nécessite donc une réflexion et une formation pour pouvoir identifier les spécificités d’un accompagnement à domicile.
Le domicile est le lieu de vie habituel de la personne malade. C’est là qu’elle a vécu, souvent depuis de longues années, parfois presque toute sa vie. Ce lieu évoque une partie de son histoire, il est rempli de souvenirs personnels. C’est aussi un lieu qui lui assure sécurité et intimité. D’une certaine façon, c’est pour lui un cocon protecteur. Quand il accueille chez lui un bénévole d’accompagnement, celui-ci est en quelque sorte son « invité ». Il sera plus à l’aise pour parler de lui-même, de son vécu, de ses expériences, de ses émotions. Il sera plus enclin à faire des confidences.
Certes, les institutions, et en particulier les EHPAD, insistent sur le caractère privé de la chambre du résident et sur la nécessité de lui garantir une certaine intimité…
Le congrès JALMALV d’Antibes en mars 2018 a fait ressortir dans sa réflexion sur l’accompagnement à domicile un faisceau de craintes, une sorte de peur diffuse, qui ferait de cette forme de bénévolat une « conduite à risques » aux plans juridique, sociologique et personnel. Il semblait, pour certains, que passer le seuil du domicile nous fasse entrer dans un monde à part, beaucoup plus instable que celui de l’hôpital. Ni la réflexion de fond sur l’intime ni les quelques expériences que j’ai des visites à domicile ne me conduisent dans cette direction. Ce d’autant moins que, toujours, nous savons faire partie d’un tout : le réseau de soins, l’hospitalisation à domicile qui nous encadre et nous soutient.
Je choisirai de traiter de l’intime comme lieu de la rencontre et non de l’intime-pudeur, la part de soi que l’on cache. Si la première acception est bien entendue, la seconde le sera de facto… Dans l’intime de moi-même, c’est-à-dire au plus profond de moi, en amont des barrières que l’éducation, la société, la culture ont établies, se trouve le lieu privilégié de la rencontre gratuite : l’intime est par excellence le lieu du « nous ». On est intime avec quelqu’un, pas tout seul. Et cet état fait l’économie de la conquête, des visées sur l’autre, des plans sur la comète, du remplissage « mondain ». C’est donc un état qui s’oppose totalement à « l’intrusion ». Être invité à entrer chez l’autre, dans sa maison, est bien un partage de l’intime, le mien, le sien.