Un guide pratique et parfaitement à jour pour répondre à toutes vos questions : Comment embaucher une aide à domicile ? Comment aménager son logement et bénéficier de la téléassistance ? Comment choisir l'établissement d'accueil le mieux adapté ? Quel est le coût d'un EHPAD ? Quelles sont les aides financières ? Quels congés pour aider un proche dépendant ? Quelle protection juridique pour une personne fragilisée ?
BACKGROUND: Annually, across the world a substantial number of dependent children experience the death of a parent through life-limiting illness. Without support, this has long-term implications for children's emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying.
AIM: To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent's death.
DESIGN: A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and open-ended questions were asked about the features of support provided; open-ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data.
RESULTS: 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z=-5.767, p<0001). Twenty-two per cent of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an underused resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers.
CONCLUSIONS: Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents and children are needed.
La stigmatisation contemporaine de la vieillesse s'étend à celle de la dépendance et de la fin de vie. C'est dans ce contexte social que les EHPAD accueillent les personnes âgées psycho dépendantes dans ce qui constituera pour la majeure partie d'entre elles, leur dernier lieu de vie. Alors qu'ils doivent envisager la fin de vie des résidents comme un devoir d'accompagnement solidaire, d'humanité dans la continuité de la vie, ils sont aussi tenus d'assurer l'effectivité des droits de la fin de vie. Dans leurs missions tout est question de juste mesure. La nécessité médicale est d'autant plus raisonnée que son bénéficiaire est fragilisé par le grand âge, la psycho dépendance et l'approche de la fin de vie. Prendre soin sans obstination déraisonnable mais aussi sans abandon arbitraire s'interprète à la lumière des principes juridiques, déontologiques et éthiques. Prendre soin en préservant le plus longtemps possible l'autonomie du résident, c'est garantir l'utilisation effective des outils juridiques de loi du 22 avril 2005 mais aussi ceux des lois du 4 mars 2002 et du 2 janvier 2002.
OBJECTIVE: A growing and increasingly vulnerable population resides in assisted living. States are responsible for regulating assisted living and vary in their requirements. Little is known about how this variability translates to differences in the dying experiences of assisted living residents. The objective of this study is to describe assisted living residents' end-of-life care trajectories and how they vary by state.
DESIGN: Observational retrospective cohort study.
SETTING AND PARTICIPANTS: Using Medicare data and a methodology developed to identify beneficiaries residing in larger assisted living communities (25+ beds), we identified a cohort of 40,359 assisted living residents in the continental United States enrolled in traditional Medicare and who died in 2016.
METHODS: We used Medicare data and the Residential History File to examine assisted living residents' locations of care and services received in the last 30 days of life.
RESULTS: Nationally, 57% of our cohort died outside of an institutional setting, that is, hospital or nursing home (n = 23,165), 18,396 of whom received hospice at the time of death. Rates of hospitalization and transition to a nursing home increased during the last 30 days of life. We observed significant interstate variability in the adjusted number of days spent in assisted living in the month before death [from 13.6 days (95% confidence interval [CI] 11.8, 15.4) in North Dakota to 24.0 days (95% CI 22.7, 25.2) in Utah] and wider variation in the adjusted number of days receiving hospice in the last month of life, ranging from 2.1 days (95% CI 1.0, 3.2) in North Dakota to 13.8 days (95% CI 12.1, 15.5) in Utah.
CONCLUSIONS AND IMPLICATIONS: Findings suggest that assisted living residents' dying trajectories vary significantly by state. To ensure optimal end-of-life outcomes for assisted living residents, state policy makers should consider how their regulations influence end-of-life care in assisted living, and future research should examine factors (eg, state regulations, market characteristics, provider characteristics) that may enable assisted living residents to die in place and contribute to differential access to hospice services.
BACKGROUND: Palliative Care (PC) is indicated in patients with functional dependency and advanced care needs in addition to those with life-threatening conditions. Older trauma patients have PC needs due to increased risk of mortality and poor long-term outcomes. We hypothesized that older trauma patients discharged alive with poor outcomes are not easily identified nor receive PC interventions.
METHODS: Prospective observational study of trauma patients 55 years or older. Patients with poor functional outcomes defined by discharge Glasgow Outcome Scale Extended (GOSE) 1-4 or death at 6-month follow-up were analyzed for rate and timing of PC interventions including goals of care conversation (GOCC), do-not-resuscitate (DNR) order, do not intubate (DNI) order, and withdrawal of life supporting measures. Logistic regression was performed for having and timing of GOCC.
RESULTS: Three hundred fifteen (54%) of 585 patients had poor outcomes. Of patients who died, 94% had GOCC compared with 31% of patients who were discharged with GOSE 3 or 4. In patients who died, 85% had DNR order, 18% had DNI order, and 56% had withdrawal of ventilator. Only 24% and 9% of patients with GOSE of 3 or 4, respectively, had DNR orders. Fifty percent of the patients who were dead at 6-month follow-up had GOCC during initial hospitalization. The median time to DNR in patients that died was 2 days compared with 5 days and 1 day in GOSE 3 and 4 (p = 0.046). Age, injury severity scale, and preexisting limited physiological reserve were predictive of having a GOCC.
CONCLUSION: The PC utilization was very high for older trauma patients who died in hospital. In contrast, the majority of those who were discharged alive, but with poor outcomes, did not have PC. Development of triggers to identify older trauma patients, who would benefit from PC, could close this gap and improve quality of care and outcomes.
L'auteur pose que la capacité à se reconnaître comme vulnérable concerne la personne dans son ensemble. Il met l'accent sur le fait que le corps, celui du malade ou celui du soignant, est au coeur de nombreux enjeux.
With various serious illness, patients experience high levels of functional loss, deconditioning, and dependency for activities of daily living (ADLs). This can lead to social isolation, depression, caregiver breakdown, and institutionalization. This fast fact wil review the benefits and challenges of palliative rehabilitation.
[Début de l'article]
L'auteure a suivi durant huit mois la vie de neuf résidents d'un habitat collectif pour personnes âgées. Située dans la région lyonnaise, cette structure accueille des personnes atteintes de la maladie d'Alzheimer et de différents troubles psychiatriques. Les notes prises au jour le jour reflètent avec humour les soins et les difficultés qui caractérisent le quotidien de ces patients.
Confrontés à des soins exigeants, parfois vitaux, quelle place reste-t-il pour la réflexivité et la considération de ce qui resiste en soi. La sensation d'une mise en impasse, vécue seul ou à plusieurs, peut alors traverser tous les acteurs. Dans ce contexte, un travail de conflictualité appellerait une déconstruction patiente pour chaque acteur, dans la sécurité d'un partenariat soignant-soigné et un exercice interdisciplinaire.
BACKGROUND: Dependence is a common life experience and innate condition for human beings due to their bodily and relational essence, but in contemporary society, it has become a stressful condition. Care dependence is central to nursing, and patients with advanced cancer are often dependent on care. Understanding nurses' perceptions of care dependence can contribute to awareness of the impact it has on nurses.
OBJECTIVE: The aim of this study was to explore palliative care nurses' experiences and perceptions regarding patient dependence.
METHODS: Sixteen nurses taking care of dependent patients in a palliative care center in Rome were interviewed. Giorgi's descriptive phenomenological method was used.
RESULTS: Nurses caring for dependent patients transcend the boundaries of dependence. Care dependence is an experience of powerlessness and regression. A patient's life in dependence is precarious, as they have to overcome the daily limits of life. Taking care of dependent patients requires nurses to manage the unmanageable and to know and to embrace change from within in order to build positive relations of personal closeness and reciprocal self-giving.
CONCLUSIONS: Nurses should be aware that self-transcendence and the consequent positive relations could make the difference in the experience of care dependence and promote personal growth for both patient and nurse. Positive and transcending relationships can transform care dependence into the opportunity to find meaning and purpose in life.
IMPLICATIONS FOR PRACTICE: The study highlights what nurses feel in caring for dependent patients. Understanding nurses' perceptions is important to delineate a proper caring for dependent patients.
Opiophobia is one of the principal causes of opioids' under-prescription in palliative care. From periods of abuse to times where their use was banned - which is still the case in some countries - the history of opioids is complex and it partially explains opiophobia. One of the main concern about the use of opioids is the risk of -dependence. Furthermore, scientific literature is not clear on this subject, in particular due to the fact that the scientific community has not yet come to an agreement on the terminology. This article shows, on the basis of specific studies, the predominance of opiophobia among the population and it outlines an historic overview of the use of opioids. In the last section, it focuses on the concept of dependence and the difficulty of measuring it in chronic opioid therapies.
Background: Terminally ill cancer patients' worsening symptom distress and functional impairment may signal disease deterioration, thus facilitating their accurate prognostic awareness (PA). However, the joint roles played by symptom distress and functional impairment in association with cancer patients' accurate PA remain unexplored.
Methods: We used hierarchical generalized linear modeling to assess associations between our five identified worsening conjoint symptom-functional states and accurate PA in a convenience sample of 317 terminally ill cancer patients over their last six months.
Results: The majority of our participants (70.1%-76.3%) had accurate PA in their last six months. This proportion did not increase as death approached but varied significantly by the five identified distinct symptom-functional states. Participants in the four worst symptom-functional states (moderate/profound symptom distress with mild/profound functional impairment) had a higher likelihood of accurate PA than those in the best state (mild symptom distress with high functioning). Participants with severe or profound symptom distress (states 3 and 5) had a substantially higher likelihood of accurate PA than those with moderate symptom distress (states 2 and 4).
Conclusion/Clinical Implications: Terminally ill cancer patients' five distinct conjoint worsening symptom-functional states were differentially associated with their likelihood of accurate PA. Health care professionals should cultivate these patients' accurate PA when they are still free from severe symptom distress and functional impairment, effectively manage symptoms for those suffering from severe/profound symptom distress, and facilitate their psychological-spiritual adjustment to acknowledge their poor prognosis and the accompanying challenges of end-of-life care decisions to maximize quality of life and achieve a good death.
Un avis récent du Comité consultatif national d'éthique (CCNE)  éclaire les soubassements éthiques de la politique d'accompagnement du vieillissement. Le champ de son questionnement est vaste. Aussi, nous avons fait le choix de nous focaliser sur un des aspects : la "concentration" des personnes âgées entre elles dans des établissements dits d'hébergement qui sont devenus, souvent à leur corps défendant, leurs résidences définitives et jusqu'à la fin de leur vie. (R.A.).
Origine : BDSP. Notice produite par EHESP I7ntR0xk. Diffusion soumise à autorisation
Since the early 1990s, long-term care policies have undergone significant transformations across OECD countries. In some countries, these changes have responded to the introduction of major policy reforms while in others, significant transformations have come about through the accumulation of incremental policy changes. This book brings together evidence from over 12 years of care reforms to examine changes in long-term care systems occurring in OECD countries. It discusses and compares key changes in national policies and examines the main successes and failures of recent reforms. Finally, it suggests possible policy strategies for the future in the sector.
Origine : BDSP. Notice produite par IRDES qR0xBJl8. Diffusion soumise à autorisation
This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
Origine : BDSP. Notice produite par IRDES R0x8nEsH. Diffusion soumise à autorisation
Les auteurs se sont entretenus avec Régis Aubry, chef de service de soins palliatifs à l'hôpital de Besançon et membre du Comité consultatif national d'éthique (CCNE) depuis 2012. Ensemble, ils évoquent les évolutions médicales, organisationnelles et politiques en lien avec la fin de vie.
CONTEXT: Discussions regarding values and goals of care are central to providing quality palliative care. An inability to hear during these sensitive discussions may significantly impair the quality of care provided yet hearing loss (HL) is not formally addressed in these settings nor in programs designed to assist practitioners gain advanced communication skills.
OBJECTIVE: To gain an understanding of hospice and palliative care practitioners' experiences with HL and its impact on the care provided.
METHOD: SurveyMonkey questionnaire eliciting whether and how HL impacted care provided with an open-ended question asking for descriptions of a situation where HL created a problem in communication with an older patient. Responses were analyzed using Constant Comparative techniques.
RESULTS: Of 510 respondents, 464 (91%) reported HL had some or great impact on the quality of care provided, 449 (88%) noted encountering a situation where HL impaired communication with an older adult, and 99 of these participants (22%) provided a specific example. The overarching theme was "Diagnostic and Treatment Uncertainty." Non-mutually exclusive categories underpinning this theme included: Unable to get needed information, Misinterpreting level of understanding, Patient misunderstanding of instructions, and Goals-of-care errors.
CONCLUSION: HL impacts the quality of care provided to persons with serious illness by disrupting the identification, assessment, and treatment of the physical, psychosocial and spiritual symptoms an individual is experiencing. HL should be formally addressed in programs designed to develop skills in conducting sensitive conversations. Practitioners should screen for HL, use practices that facilitate comprehension, and use assistive listening devices as needed.
Ce livre fait le point sur la réflexion éthique, philosophique et psychanalytique pour parvenir à appréhender la souffrance humaine face à l'approche de la mort tout en fournissant des repères sur ce que vit la personne en situation palliative.
We use two historical data sources - the Health and Retirement Study and the Medicare Current Beneficiary Study - to consider the patterns in older Americans' severe disability and their use of long-term services and supports (LTSS) by age and socioeconomic status. We then use a dynamic microsimulation model to project how the effects of various interventions to support those with severe disabilities and their caregivers would be distributed across the income distribution. The interventions that we examine fall into three broad classes : tax credits for caregiving expenses, respite care for people in the community with family caregivers, and new social insurance programs. Within each broad class of policies, we examine how sensitive outcomes are to changes in policy details (such as, in the case of tax credits, deductible levels, refundability, and income phase-outs).
Origine : BDSP. Notice produite par IRDES H8rkR0xB. Diffusion soumise à autorisation