Rassemblant les compétences d'experts, qui dialoguent avec celles et ceux qui travaillent chaque jour dans l'accompagnement, ce recueil examine les problèmes éthiques et pratiques soulevés notamment par le surconfinement des personnes âgées et dépendantes durant la pandémie, les risques de "glissement" suscités par les mesures de protection sanitaire, la restriction ou l'interdiction du toucher lors des visites, les modifications du regard porté sur le grand âge.
Bénévole d’accompagnement depuis 2007, j’interviens au domicile ou à l’Ehpad de Die (26) depuis 2010, après avoir accompagné des patients à l’unité de soins palliatifs. J’ai la chance d’avoir rencontré Mme A. à la demande de l’équipe mobile de soins palliatifs. Nous sommes plusieurs bénévoles auprès d’elle, depuis quelques années. Nous l’avons d’abord connue dans son appartement d’un quartier de Die, et depuis 4 ans, nous la visitons à l’Ehpad rattaché à l’hôpital. Par sa durée, cet accompagnement me rend témoin d’un lent dépouillement, fait de pertes successives soulignant sa solitude.
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BACKGROUND: There has been a rapid increase in the number of residential care/assisted living communities (RC/AL) that allow residents to die in place. The objective of this study was to examine the organizational characteristics of RC/AL communities that are associated with facility-level policies supportive of admitting and retaining residents in need of end-of-life (EOL) care.
METHODS: We used cross-sectional data from the 2010 National Survey of Residential Care Facilities. Organizational characteristics included structural factors, staffing levels, and other relevant facility-level policies. We examined descriptive statistics, binomial and multivariable multinomial regression models to determine the likelihood of 1) admitting and retaining, or 2) only retaining, as compared to 3) neither admitting nor retaining AL residents in need of EOL care.
RESULTS: A majority of residential care facilities 73.7% (n = 22,642) reported admitting and retaining residents at EOL. Yet, levels of skilled nursing care were generally low with 60.9% of these RC/AL communities reporting that registered nurses were not available, including hospice staff. In multivariable, multinomial regression models, organizational characteristics such as skilled nursing, hands-on contact hours from personal care aides, and policies allowing exemptions to self-evacuation rules were associated with increased likelihood of RC/AL communities admitting/retaining residents in need of EOL care.
CONCLUSION: Despite overall low levels of skilled nursing care, a nationally representative survey revealed that a majority of RC/AL communities admit and retain residents in need of EOL care. Staffing and exemptions from self-evacuation policies appear to be central characteristics associated with the provision of these services in RC/AL communities.
Context: Managing activities of daily living is important to people with advanced cancer or chronic obstructive pulmonary disease (COPD). Understanding disability in activities of daily living may inform service planning.
Objective: To identify the prevalence of disability in activities of daily living, associations and change over time, in older people with advanced cancer or COPD.
Methods: Secondary analysis of International Access, Rights and Empowerment (IARE) studies in adults aged =65 years with advanced disease in the UK, Ireland, and USA. Cross-sectional (IARE I & II) and longitudinal (IARE II, 3 timepoints over 6-months) data. Measures: disability in activities of daily living (Barthel Index), symptom severity (Palliative Outcome Scale), assistive device use (self-reported). Logistic regression was used to identify relationships between disability and age, sex, living alone, diagnosis, and symptom burden; Visual Graphical Analysis explores individual disability trajectories.
Results: 159 participants were included (140 cancer, 19 COPD). 65% had difficulty climbing stairs, 48% bathing, 39% dressing, 36% mobilising. Increased disability was independently associated with increased symptom burden (odds ratio [OR], 1.08 [95% CI:1.02-1.15], p=0.01) and walking unaided (z=2.35, p=0.02), but not with primary diagnosis (z=-0.47, p=0.64). Disability generally increased over time but with wide inter-individual variation.
Conclusion: Disability in activities of daily living in advanced cancer or COPD is common, associated with increased symptom burden, and may be attenuated by use of assistive devices. Individual disability trajectories vary widely, with diverse disability profiles. Services should include rehabilitative interventions, guided by disability in individual activities of daily living.
As they age, many people are afraid that they might become a burden to their families and friends. In fact, fear of being a burden is one of the most frequently cited reasons for individuals who request physician aid in dying. Why is this fear so prevalent, and what are the issues underlying this concern? I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear is misplaced; common conceptions of these values should be re-framed and re-examined. Practices that support a more community-centered type of autonomy can be found in dependency and dignity. This paper offers some practical examples of how to address common end-of-life situations that may cause anxiety to patients who are worried about being a burden. These practices include discussing expectations, both for care and how the relationship among the participants might change, and modeling respectful caregiving behaviors. Most difficult of all, though, includes cultural and societal attitude changes so that people recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
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.
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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.