A partir de son expérience et de témoignages, l'auteure explique ce qui fait la particularité de la dépendance psychique des personnes âgées atteintes de la maladie d'Alzheimer ou psychotiques qui vivent dans les Ehpad afin de réfléchir aux moyens de leur assurer le meilleur accompagnement possible.
Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.
Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.
Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).
Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.
AIMS: To describe advance care planning in nursing homes when residents with cognitive impairment and/or their next of kin participated and identify associated challenges.
DESIGN: A qualitative study of nine advance care planning conversations in four Norwegian nursing home wards. During the implementation of advance care planning, we purposively sampled residents with cognitive impairment, their next of kin and healthcare personnel. The implementation followed a "whole-ward" approach aimed at involving the whole ward in fostering an inclusive, holistic advance care planning discussion. Involving as many residents as possible, preferably together with their next of kin, were central.
METHODS: From observed and audio-recorded advance care planning conversations that took place from November 2015 to June 2016, we conducted a thematic analysis of the transcripts and field notes. Reporting adhered to the COREQ guidelines.
RESULTS: Residents actively relayed their preferences regarding healthcare and end-of-life issues, despite the cognitive impairment. Next of kin provided constructive support and conversations were largely resident-focused. However, involving residents was also challenging, findings included: residents' preferences were often vague, relevant medical information from healthcare personnel lacked and the next of kin were sometimes unaware of the resident's previously held preferences. Moreover, residents tended to focus more on the past and present than the future end-of-life care.
CONCLUSIONS: Residents with cognitive impairment can participate actively and meaningfully in advance care planning, if the healthcare personnel actively listens. However, several challenges can arise. Supported decision-making can improve communication and resident involvement, reinforcing a relational understanding of autonomy.
IMPACT: Persons with cognitive impairment should be invited to participate in advance care planning. Their participation may make its benefits and more person-centred care attainable to persons that are often not involved. Successful involvement of persons with cognitive impairment in advance care planning may rely on robust implementation.
Les troubles cognitifs sont fréquents chez les patients atteints de sclérose en plaques, avec des degrés d’intensité divers. Ils peuvent impacter de manière significative la vie quotidienne et professionnelle des patients, ainsi que leur qualité de vie. Le dépistage de ces troubles est donc important et les neurologues doivent s’investir dans leur évaluation afin de proposer une prise en charge adaptée. Les liens entre cognition et comportement sont souvent intriqués. Il peut être utile de rappeler le vocabulaire neuropsychologique définissant les différents symptômes les plus souvent observés dans la sclérose en plaques. Ceci permet aussi de visiter clinique et anatomie. Nous proposons un lexique qui définit 118 termes susceptibles d’aider les neurologues dans la compréhension des troubles de la cognition et du comportement chez leurs patients, de faciliter leur écoute dans un entretien, de prescrire quand il le faut une expertise de première ligne ou plus spécialisée, de lire des travaux scientifiques où ces données sont de plus en plus citées et de communiquer en utilisant un vocabulaire commun.
Le concept de thanatose fait du déni de l’angoisse de mort le primum movens de certains troubles cognitifs dans les démences des personnes âgées. Il met ainsi l’accent sur leur origine langagière et donc intersubjective. Il voit dans l’exclusivité accordée aujourd’hui à leur origine organique une dérive conceptuelle liée à ce déni. Son utilisation en synergie avec le modèle anatomoclinique met fin à cette exclusivité et lève le déni. Elle permet de distinguer parmi ces troubles ceux qui définitivement inintelligibles sont effectivement d’origine organique et ceux qui s’avérant finalement intelligibles sont liés à l’âgisme généré lui aussi par l’angoisse de mort. Admettre la nécessité de les disjoindre est un préalable indispensable à l’amélioration du pronostic de ces démences.
Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
PURPOSE: Understanding the end-of-life psychosocial needs of cancer patients at home is a knowledge gap. This study describes the trajectory of psychosocial symptoms in the last 6 months of life among cancer decedents who were receiving home care.
METHODS: Observational population-based cohort study of cancer decedents who were receiving home care services between 2007 and 2014. Decedents had to have at least one home care assessment in the last 6 months of life for inclusion. Outcomes were the presence of psychosocial symptoms (i.e., anxiety, loneliness, depression, social decline, caregiver distress, and cognitive decline) at each week before death.
RESULTS: Our cohort included 27,295 unique cancer decedents (30,368 assessments), of which 58% died in hospital. Fifty-six percent were older than 74, and 47% were female. The prevalence of all symptoms increased approaching death, except loneliness. Social decline (48%-78%) was the most prevalent psychosocial symptom, though loneliness was reported in less than 10% of the cohort. Caregiver distress rose over time from 15%-27%. A third of the cohort reported issues with cognitive impairment. Multivariate regression showed that physical symptoms such as uncontrolled pain, impairment in independent activities of daily living, and a high level of health instability all significantly worsened the odds of having a psychosocial symptom in the last 3 months of life.
CONCLUSION: In this large home care cancer cohort, trajectories of psychosocial symptoms worsened close to death. Physical symptoms, such as uncontrolled pain, were associated with having worse psychosocial symptoms at end of life.
PURPOSE OF REVIEW: The purpose of this review is to describe ethical and legal issues that arise in the management of patients with disorders of consciousness ranging from the minimally conscious state to the coma state, as well as brain death.
RECENT FINDINGS: The recent literature highlights dilemmas created by diagnostic and prognostic uncertainties in patients with disorders of consciousness. The discussion also reveals the challenges experienced by the disability community, which includes individuals with severe brain injury who are classified as having a disorder of consciousness. We review current guidelines for management of patients with disorders of consciousness including discussions around diagnosis, prognosis, consideration of neuropalliation, and decisions around life sustaining medical treatment.
SUMMARY: In the setting of uncertainty, this review describes the utility of applying a disability rights perspective and shared decision-making process to approach medical decision-making for patients with disorders of consciousness. We outline approaches to identifying surrogate decision makers, standards for decision-making and decision-making processes, specifically addressing the concept of futility as a less useful framework for making decisions. We also highlight special considerations for research, innovative and controversial care, brain death, organ donation, and child abuse and neglect.
Yoga was developed >5,000 years ago as a comprehensive system of health and well-being for the mind, body, and soul. The word is believed to derive from the Sanskrit root "yuj" meaning to bind, yoke, union, and/or to concentrate one's attention. In health care, it often serves as a complementary mind-body practice, and it is increasingly being integrated into cancer care. It can be performed in the privacy of one's home through DVD or web-based programs or through group practices led by instructors who are often experienced working with students with medical issues. Most published evidence regarding yoga for seriously ill patients involves breast cancer survivors or breast cancer (stages I-IV) patients undergoing cancer treatment with a preserved functional capacity (ECOG <3). There is limited data examining its effectiveness or feasibility in children or for those with terminal cancer.
BACKGROUND: Facing the relentless worsening of their condition, ALS patients are required to make decisions on treatments and end-of-life care. A cognitive impairment showed to be a negative prognostic factor in ALS patients, perhaps affecting the ability to make informed decisions. Notwithstanding its crucial role, the capacity to consent to treatment (CCT) has never been evaluated in these patients.
OBJECTIVES: To assess the CCT in an ALS cohort in comparison to a control group, and to study the effects of demographic and clinical variables on this high-level cognitive function.
METHODS: 102 ALS patients and 106 healthy controls (HC) were enrolled. CCT was assessed using the MacArthur Competence Assessment Tool for Treatment (MAC-CAT-T) and the performance was classified into the three CCT outcomes (full credit, partial credit, no credit). Cognitive and psychological variables were assessed by MMSE, phonemic fluencies, Frontal System Behavioural Scale (FrSBe), and ALS Depression Inventory (ADI). Clinical and demographic variables were analyzed as possible predictors of the MAC-CAT-T outcomes. After a 1-year follow-up, CCT and neuropsychological assessments were repeated.
RESULTS: Most ALS patients (i.e., from 75 to 83% according to the different sub-items) retain full CCT. However, a subpopulation of the ALS patients showed a reduced CCT with respect to the HC. Age, education, phonemic fluency, and depression appeared related to the CCT outcomes. After 1 year, only the reasoning items worsened.
CONCLUSIONS: This is a preliminary report suggesting that the large majority of ALS patients can retain full ability to choose between treatment options. However, demographic and neuropsychological variables may affect CCT, pointing to the need for special attention to the consent disclosure in this disease.
Aging adults (65+) with disability are especially vulnerable to coronavirus disease 2019 (COVID-19), and on contracting, they are a cohort most likely to require palliative care. Therefore, it is very important that health services-particularly health services providing palliative care-are proximately available. Treating the Melbourne metropolitan area as a case study, a spatial analysis was conducted to clarify priority areas with a significantly high percentage and number of aging adults (65+) with disability and high barriers to accessing primary health services. Afterward, travel times from priority areas to palliative medicine and hospital services were calculated. The geographic dispersion of areas with people vulnerable to COVID-19 with poor access to palliative care and health services is clarified. Unique methods of health service delivery are required to ensure that vulnerable populations in underserviced metropolitan areas receive prompt and adequate care. The spatial methodology used can be implemented in different contexts to support evidence-based COVID-19 and pandemic palliative care service decisions.
Some disability rights advocates criticise prenatal testing and selective abortion on the grounds that these practices express negative attitudes towards existing persons with disabilities. Disability rights advocates also commonly criticise and oppose physician-assisted suicide (PAS) and euthanasia on the same grounds. Despite the structural and motivational similarity of these two kinds of arguments, there is no literature comparing and contrasting their relative merits and the merits of responses to them with respect to each of these specific medical practices. This paper undertakes such a comparison. My thesis is that a number of potentially significant weaknesses of the expressivist argument against reproductive technologies are avoided when the argument is used against PAS. In particular, I try to show that three common criticisms of the expressivist argument applied to reproductive technologies, whatever merit they have, have even less merit when they are used to reply to the expressivist argument applied to PAS. This is important because the expressivist argument applied to the end of life scenario does not get as much attention as the argument applied to the beginning of life scenario, and yet it has a relatively stronger position.
Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence.
Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care.
Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974).
Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included.
Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom (n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support).
Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.
Objective: Given a large number of community-based older adults with mild cognitive impairment, it is essential to better understand the relationship between unmet palliative care (PC) needs and mild cognitive impairment in community-based samples.
Method: Participants consisted of adults ages 60+ receiving services at senior centers located in New York City. The Montreal Cognitive Assessment (MoCA) and the Unmet Palliative Care Needs screening tool were used to assess participants’ cognitive status and PC needs.
Results: Our results revealed a quadratic relationship between unmet PC needs and mild cognitive impairment, controlling for gender, living status, and age. Participants with either low or high MoCA scores reported lower PC needs than participants with average MoCA scores, mean difference of the contrast (low and high vs. middle) = 2.15, P = 0.08.
Significance of results: This study is a first step toward elucidating the relationship between cognitive impairment and PC needs in a diverse community sample of older adults. More research is needed to better understand the unique PC needs of older adults with cognitive impairment living in the community.
En 2013, le Conseil d’éthique de la Fédération genevoise des établissements médico-sociaux (Fegems) émettait des recommandations relatives au "Respect des volontés du résidant atteint de troubles cognitifs", que la Revue internationale de soins palliatifs reprend ci-après dans son intégralité. En effet, les enjeux éthiques soulevés par les soins – entendus au sens large – aux personnes souffrant de troubles cognitifs restent malheureusement d’actualité. C’est la raison pour laquelle ce même conseil a publié en 2019 des nouvelles recommandations intitulées « Petit manuel d’anticipation en EMS : le projet d’accompagnement et les directives anticipées ». Dans cette publication, le Conseil d’éthique souligne, à travers des exemples concrets, l’importance de l’anticipation dans l’accompagnement de la résidante ou du résidant. L’anticipation joue un rôle déterminant parce que la pratique montre que beaucoup de résidant-e-s se sentent inconfortables lorsqu’ils doivent envisager une incapacité de discernement future et que les professionnel-le-s se sentent mal à l’aise et se demandent quand et comment les informer, ainsi que leurs proches, de leurs droits. En outre, le domaine des directives anticipées est complexe et technique, en raison des exigences légales et des difficultés d’interprétation qu’il comporte. Le Conseil d’éthique est convaincu que le projet d’accompagnement est l’outil le mieux adapté pour appréhender la vie de la résidante ou du résidant dans l’EMS, et pour donner une assise cohérente à d’autres dispositifs tels que le projet de soins anticipé ou les directives anticipées.
This article discusses a recent ruling by the German Federal Court concerning medical professional liability due to potentially unlawful clinically assisted nutrition and hydration (CANH) at the end of life. This case raises important ethical and legal questions regarding a third person's right to judge the value of another person's life and the concept of 'wrongful life'. In our brief report, we discuss the concepts of the 'value of life' and wrongful life, which were evoked by the court, and how these concepts apply to the present case. We examine whether and to what extent value-of-life judgements can be avoided in medical decision-making. The wrongful-life concept is crucial to the understanding of this case. It deals with the question whether life, even when suffering is involved, could ever be worse than death. The effects of this ruling on medical and legal practice in Germany are to be seen. It seems likely that it will discourage claims for compensation following life-sustaining treatment (LST). However, it is unclear to what extent physicians' decisions will be affected, especially those concerning withdrawal of CANH. We conclude that there is a risk that LST may come to be seen as the 'safe' option for the physician, and hence, as always appropriate.
BACKGROUND: Increasing life expectancy for people with an intellectual disability (ID) is resulting in more persons with cancer and a greater need for end-of-life (EoL) care. There is a need for knowledge of health care utilisation over the last year of life to plan for resources that support a high quality of care for cancer patients with ID. Therefore, the aims of the study were to compare (1) health care utilisation during the last year of life among cancer patients with ID and cancer patients without ID and (2) the place of death in these two groups.
METHODS: The populations were defined using national data from the period 2002-2015, one with ID (n = 15 319) and one matched 5:1 from the general population (n = 72 511). Cancer was identified in the Cause of Death Register, resulting in two study cohorts with 775 cancer patients with ID (ID cohort) and 2968 cancer patients from the general population (gPop cohort).
RESULTS: Cancer patients with ID were less likely than those without ID to have at least one visit in specialist inpatient (relative risk 0.90, 95% confidence interval 0.87-0.93) and outpatient (0.88, 0.85-0.91) health care, during their last year of life. Those with ID were more likely to have no or fewer return visits than the patients in the gPop cohort (5 vs. 11, P < 0.001), also when stratifying on sex and median age at death. Most cancer patients with ID died in group homes or in their own homes and fewer in hospital (31%) as compared with cancer patients in the gPop cohort (55%, 0.57, 0.51-0.64).
CONCLUSIONS: Older cancer patients with ID were less likely to be assessed or treated by a specialist. This may suggest that people with ID have unaddressed or untreated distressing symptoms, which strongly contributes to a decreased quality of EoL care and a poor quality of life. There is a need to acquire further knowledge of the EoL care and to focus on adapting and evaluating quality indicators for older cancer patients with ID.
Après un point sur les théorisations de la mort propre, je m'arrêterai sur la question de la pensée de leur propre mort par des sujets psychotiques et/ou présentant un déficit cognitif. Enfin, je reprendrai la question du côté des professionnels et de leurs difficultés à penser la fin de vie de "leurs" résidents et à se représenter comment ceux-ci pensent, ou non, leur propre mort.
[Extrait de l'intro.]
Pour certaines personnes à l'approche de la mort, la désorientation leur permettrait de revisiter leur histoire "sans filtre" en toute authenticité, comme un exercice de "réparation" consistant en quelque sorte à s'affranchir de certains de leurs actes au regard du contexte et des usages de l'époque pour se réconcilier avec leur passé et mourir en paix.
Comment vieillir en Ehpad ou en USLD dans un monde étrange où il n'y a que des "vieux", où la majorité des résidents ont des troubles cognitifs ? Comment se sentir vivant, existant, malgré la fragilité et les troubles ? Comment garder une place dans la société ? Rencontrer ces personnes nous fait découvrir le monde autrement, entrer dans un autre espace-temps. Leur fragilité nous confronte à l'essentiel de la vie : être avec, dans le moment présent, authentiquement.