L 'affaire de notre confrère de Normandie mis en cause pour avoir utilisé du midazolam à domicile a agi comme un détonateur. Comme une soudaine prise de conscience du fait que l’on meurt aussi chez soi et que l’on doit pouvoir bénéficier des mêmes soins et accompagnement, quel que soit le lieu.
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BACKGROUND: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.
METHODS: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties.
RESULTS: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.
CONCLUSIONS: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, 'outside the box' thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.
Doctors, nurses, and family caregivers worldwide are facing tough decisions concerning the supply and administration of medications to manage symptoms when patients are dying from covid-19 or other conditions in the community or care homes. Proposed changes in practice aimed at ensuring adequate end-of-life symptom control need careful consideration alongside appropriate training and support.
Updated UK advice, including NICE rapid guidance on managing covid-19 symptoms in the community, reiterates the importance of prescribing medications in advance of need for pain, nausea and vomiting, agitation, and respiratory secretions. These drugs may be administered if needed by visiting doctors or nurses, as is already well established in some countries. However, this practice is being overhauled radically in response to the pandemic.
Purpose: To determine the use of avoidable medications in end-of-life patients living at home when they were moved from the general practice setting to the palliative medicine physician (T1) and before death (T2).
Methods: This retrospective longitudinal study describes the prevalence of end-of-life patients cared for at home between April 2016 and December 2018 receiving preventive and symptomatic drug treatments. Socio-demographic data, diagnosis and drug treatments for each patient were collected in a web-based Case Report Form.
Results: The study sample comprised 1565 end-of-life patients with a median age (25–75 percentile) of 79.8 (72.5–85.3 years). All patients were treated with symptomatic drugs, and there were significantly fewer patients from T1 to T2 with at least one preventive medication at end of life (92.1% and, 60.8%, p < 0.0001). There was a significant variability between the palliative care physicians in the mean numbers of avoidable preventive medication (1.5–3.9 at T1 and 0.4–2.7 at T2, p = 0.06) prescribed.
Conclusion: More than half end-of-life patients living at home still receive avoidable medications. Drug prescription needs to be improved and palliative care setting could have an important role in reducing potentially inappropriate prescriptions. Emphasizing the positive aspects of stopping medicines, shared criteria with de-prescribing guidelines for potentially inappropriate medication in end-of-life patients and multidisciplinary discussion with involvement of patient and family caregivers could be useful to rationalize drug therapy.
Les causes de rupture du maintien au domicile de personnes en fin de vie sont souvent liées à l’épuisement des proches et au sentiment d’insécurité. L’objectif de cette étude est de connaître les attentes envers le médecin généraliste (MG) de l’aidant principal d’une personne en phase palliative avancée au domicile. Il s’agit d’une étude qualitative sur la base de dix entretiens semi-directifs menés avec un guide d’entretien auprès de proches de personnes décédées. Les enregistrements ont fait l’objet d’une analyse de contenu. Les principales attentes envers le MG concernent sur le plan technique, un ajustement des thérapeutiques ; sur le plan organisationnel, une disponibilité importante ainsi qu’un lien entretenu avec les différents intervenants et les structures notamment de soins palliatifs ; sur le plan relationnel, une écoute et une information sur l’évolution de la maladie ; sur le plan décisionnel, le respect de la volonté du patient. Les résultats sont discutés à partir de trois concepts adaptés au MG, à savoir la capacité d’adaptation de sa pratique et de son savoir-être, l’anticipation des situations d’urgence et de l’évolution de la maladie, et enfin l’assurance d’une continuité des soins qui passe notamment par leur permanence et leur coordination. Les moyens dont dispose le MG paraissent insuffisants pour assurer le maintien à domicile devant la charge que représente un patient en phase palliative avancée. La diffusion de la démarche palliative au domicile et l’optimisation de l’interprofessionnalité auprès des personnes en fin de vie au domicile et de leurs proches sont à développer. L’enjeu est le respect de la demande du patient de mourir à son domicile.
Les difficultés financières, l’absence de couverture sociale et la pénurie médicale contribuent à ce que, en Ouganda, de nombreux malades et leurs familles soient livrés à eux-mêmes. Pourtant les équipes soignantes et les associations se mobilisent pour diffuser la culture palliative dans le respect des diversités culturelles. Très autonomes dans leur expertise clinique, les infirmières dispensent des soins et vont à la rencontre des patients à domicile.
PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics.
METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement.
RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations.
CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.
BACKGROUND: Patients with advanced non-small cell lung cancer greatly care about where they will die. Most people in Japan preferred their location of death as their homes. But only 8.2% of patients with cancer spend their last days at home with palliative care in Japan. Many patients with cancer are still going to spend their last days at a hospital (81.7%).
OBJECTIVE: We examined the survival times of such patients according to their place of death; that is, whether they died at home, at a hospice, or at a hospital, and investigated patient characteristics.
RESULTS: Among the 313 patients recruited, 214 were analyzed in this study: 90, 49, and 75 received hospital-based, home-based, and hospice-based palliative care, respectively. The patients who died at a hospice exhibited significantly longer survival than those who died at hospital (estimated median survival time, 420 days [95% confidence interval [CI]: 325-612 days] versus 252 days [95% CI: 201-316 days]; P < .0001). The characteristics of patients did not differ significantly according to place of death.
CONCLUSIONS: Patients who died at a hospice or at home exhibited significantly longer survival than those who died at a hospital for advanced non-small cell lung cancer.
Background: Palliative care is associated with improved symptom control and quality of life in people with heart failure. There is conflicting evidence as to whether it is associated with a greater likelihood of death at home in this population. The objective of this study was to describe the delivery of newly initiated palliative care services in adults who die with heart failure and measure the association between receipt of palliative care and death at home compared with those who did not receive palliative care.
Methods and Results: We performed a population-based cohort study using linked health administrative data in Ontario, Canada of 74 986 community-dwelling adults with heart failure who died between 2010 and 2015. Seventy-five percent of community-dwelling adults with heart failure died in a hospital. Patients who received any palliative care were twice as likely to die at home compared with those who did not receive it (adjusted odds ratio 2.12 [95% CI, 2.03–2.20]; P<0.01). Delivery of home-based palliative care had a higher association with death at home (adjusted odds ratio 11.88 [95% CI, 9.34–15.11]; P<0.01), as did delivery during transitions of care between inpatient and outpatient care settings (adjusted odds ratio 8.12 [95% CI, 6.41–10.27]; P<0.01). Palliative care was most commonly initiated late in the course of a person's disease (=30 days before death, 45.2% of subjects) and led by nonspecialist palliative care physicians 61% of the time.
Conclusions: Most adults with heart failure die in a hospital. Providing palliative care near the end-of-life was associated with an increased likelihood of dying at home. These findings suggest that scaling existing palliative care programs to increase access may improve end-of-ife care in people dying with chronic noncancer illness.
Background: It is widely reported that carers who provide care for a family member with dementia endure physical and psychological burdens. Not only do they fulfil an important role for the person with dementia but also for the wider society. This study aims to explore the experiences of carers who provide end-of-life care for a person with late-stage dementia at home.
Method: Semi-structured interviews were conducted with 17 current carers and 6 past carers of a family member with late-stage dementia. Data was analysed using interpretative phenomenological analysis.
Results: Four super-ordinate themes were identified which described the challenges faced by carers at different stages of their care giving journey: (1) The experience of dementia grief; (2) Parenting the parent; (3) Seeking support; (4) Death, dying and life after death.
Conclusion: Dementia grief was experienced by carers as a result of a relationship change and an inability to recognise the person with dementia as their mother, father or spouse. A role transition ensued resulting in the carer adopting the role of parent. Carers expressed a desire to provide care for the person with dementia at home until the time of death; however, support is required in this area at both individual and community level. Family carers require education to help identify the dying phase which will assist to minimise the shock of death. Strong evidence suggests that the burden of care may leave family carers poorly equipped to adapt to life after the death of the person with dementia. Greater pre-death support is required to facilitate a better post bereavement adjustment.
AIM: To evaluate the feasibility of a structured nurse-led supportive intervention and its effects on family caregivers in end-of-life care at home.
BACKGROUND: Family caregivers are crucial in end-of-life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers' burden and improve preparedness. However, few nurse-led interventions are available to support family caregivers in end-of-life care at home.
DESIGN: We will perform a cluster randomised controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group.
METHODS: The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self-Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019.
IMPACT: Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end-of-life care.
Objective: Evaluate trends in place of death for patients with head and neck cancers (HNC) in the U.S. from 1999 to 2017 based on the CDC WONDER (Wide-ranging Online Data for Epidemiologic Research) database.
Materials/methods: Using patient-level data from 2015 and aggregate data from 1999 to 2017, multivariable logistic regression analyses (MLR) were performed to evaluate for disparities in place of death.
Results: We obtained aggregate data for 101,963 people who died of HNC between 1999 and 2017 (25.9% oral cavity, 24.6% oropharynx/pharynx, 0.4% nasopharynx, and 49.1% larynx/hypopharynx). Most were Caucasian (92.7%) and male (87.0%). Deaths at home or hospice increased over the study period (R2 = 0.96, p < 0.05) from 29.2% in 1999 to 61.2% in 2017. On MLR of patient-level data from 2015, those who were single (ref), ages 85+ (OR 0.78; 95% CI: 0.68, 0.90), African American (OR 0.73; 95% CI: 0.65, 0.82), or Asian/Pacific Islanders (OR 0.66; 95% CI: 0.54, 0.81) were less likely to die at home or hospice. On MLR of the aggregate data (1999–2017), those who were female (OR 0.87; 95% CI: 0.83, 0.91) or ages 75–84 (OR 0.79; 95% CI: 0.76, 0.82) were also less likely to die at home or hospice. In both analyses, those who died from larynx/hypopharynx cancers were less likely to die at home or hospice.
Conclusions: HNC-related deaths at home or hospice increased between 1999 and 2017. Those who were single, female, African American, Asian/Pacific Islander, older (ages 75+), or those with larynx/hypopharynx cancers were less likely to die at home or hospice.
INTRODUCTION: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people's own homes.
OBJECTIVE: To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.
DESIGN: A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.
SETTING: A hospice in the North East of England, operating in the community, through volunteers.
PARTICIPANTS: Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).
RESULTS: Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.
CONCLUSIONS: Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.
We examined people’s preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (= 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting “choosing who makes decisions about your care” as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.
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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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: 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.