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.
BACKGROUND: People with learning disability (LD) have complex comorbidities that develop at an earlier age than the general population and with which they are now living longer. Identification, assessment and management of these conditions is important but challenging.
AIM: To develop resources with care staff to enable them to recognise and manage changes and decline in the health of a person with a LD.
METHODS: Two resources (PIP-LD and CIRC) were developed through undertaking a literature review; networking with experts; and collaborating with staff in the care homes for people with a LD. Care staff then used these resourcesto review their residents.
FINDINGS: The PIP-LD and CIRC were used in 39 care homes. The PIP-LD empowered staff to meet people's immediate health needs, and the CIRC helped them to recognise changes or a decline.
CONCLUSIONS: The combined use of the PIP-LD and the CIRC enabled care staff to recognise the signs and symptoms of each person's comorbidities early, and to identify and manage changes when their health declined.
Most people die when they are old, but predicting exactly when this will occur is unavoidably uncertain. The health of older people is challenged by multimorbidity, disability and frailty. Frailty is the tendency to crises or episodes of rapid deterioration. These are often functional or non-specific in nature, such as falls or delirium, and recovery is usually expected. Health-related problems can be defined in terms of distress and disability. Distress is as often mental as physical, especially for people with delirium and dementia. Problems can be addressed using the principles of supportive and palliative care, but there is rarely a simple solution. Most problems do not have a palliative drug treatment, and the propensity to adverse effects means that drugs must be used with caution. Geriatricians use a model called comprehensive geriatric assessment, including medical, functional, mental health, social and environmental dimensions, but also use a variety of other models, such as the acute medical model, person-centred care, rehabilitation, alongside palliative care. Features such as communication, family engagement and advance planning are common to them all. These approaches are often consistent with each other, but their commonalities are not always recognised. The emphasis should be on making the right decision at a given point in time, taking account of what treatment is likely to deliver benefit, treatment burden and what is wanted. Choices are often limited by what is available and feasible. Palliative care should be integrated with all medical care for frail older people.
This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed.
The number of elderly suffering from dementia and complex disabilities is gradually increasing in nursing homes, and they form a differentiated group that requires palliative care provided by practitioners in various disciplines from the time of their admission to improve the quality of their remaining lives. The purpose of this study was to explore an interdisciplinary care approach by nurses and related practitioners for the demented and complex-disabled elderly in nursing homes that focuses on palliative care based on an ethical point of view. A qualitative thematic analysis was conducted through in-depth interviews of 29 interdisciplinary practitioners working at 5 nursing homes. From them, 3 themes and 9 subthemes were extracted as the key results. First, practitioners set up cooperative care plans based on constantly tracking down clues to gradual functional deteriorations. Second, practitioners establish a cooperative committee to link residents and practitioners for responding to the subtle expressions of the elderly. Finally, practitioners maximize the opportunities for improving the quality of the elderly’s remaining lives. These results can be the basis for the first prototype in developing interdisciplinary practical guidelines for nursing home–specific palliative care and can provide new insights for the practical care concept of palliative care.
OBJECTIVE: The goal of this review is to analyse articles on the experience of surrogates who find themselves making end-of-life decisions for a relative with a major neurocognitive disorder in a nursing home.
DESIGN: An integrative review of the literature based on Whittemore and Knafl's method.
DATA SOURCES: This review used the CINAHL, PubMed, PsycInfo, Embase and Web of Science databases. A complementary search was also conducted via citation pearl searching, and the reference lists from the selected articles were manually verified.
REVIEW METHOD: The quality of the selected articles was assessed using the Crow Critical Appraisal Tool, and the data were extracted systematically and were then organised according to Mishel's uncertainty in illness theory. The data that did not correspond to any concept of the theory were excluded at this stage. Analysis was conducted using the method put forward by Miles, Huberman and Saldaña.
RESULTS: A total of 18 articles were selected: 11 qualitative, 5 quantitative and 1 using a mixed method, as well as 1 ethical argument. The subjects arising from the analysis of the articles were the types of decisions made, the support available for the surrogates, the role and involvement of the surrogates in the process and the factors that influence the decisions.
CONCLUSION: The results of this integrative review stimulate reflection on the needs of family members involved in making decisions, as well as on the nursing practice and research. Published literature is mainly from North America, and thus, more research is needed to better understand the impact of cultural and ethnic differences in the process, which was poorly covered by the existing literature. Also, exploring nurses' involvement in supporting surrogates may eventually better equip nurses for their interventions with surrogates.
IMPLICATIONS FOR PRACTICE: Describing the illness progression and the signification of palliative care to the resident with a NCD and their surrogate decision makers, as well as discussing end-of-life care preferences as early as possible are all nursing interventions that could potentially enhance surrogates' end-of-life decision-making process.
OBJECTIVE: Bereavement can result in unresolved and prolonged grief, often termed prolonged grief disorder (PGD). The impact of PGD on cognitive functioning is poorly understood. The aim of the study was to compare the cognitive decline, assessed by repeated measures of different cognition domains, between persons with normal and PGD and a non-grieving reference population in a 7-year follow-up study.
METHODS: The study sample comprised 3126 non-demented persons, mean age: 64 years, of the Rotterdam Study. Participants were classified into three groups: no grief (reference group, N = 2,582), normal grief (N = 418), and prolonged grief disorder (N = 126). Participants were assessed with the Complicated Grief Inventory and underwent cognitive testing (Mini-Mental State Examination [MMSE], Letter-Digit Substitution test, Stroop test, Word fluency task, Word learning test). Analyses were adjusted for baseline cognition and depressive symptoms; persons with major depressive disorders were excluded.
RESULTS: Compared with the reference group, participants with PGD showed a decrease in global cognitive function, MMSE scores, and World learning test (immediate and delayed) over time. Participants with normal grief did not show a stronger cognitive decline in any of cognitive tests than the reference group.
CONCLUSIONS: Participants with PGD showed a stronger cognitive decline than the reference group during 7 years of follow-up. This suggests that PGD is a risk factor for cognitive decline, but this study cannot detect the psychobiological mechanism underlying this longitudinal association.
De par mon enfance et adolescence au Maroc, j'ai été profondément marquée par les fragrances et rituels de beauté. De cette beauté intégrée à la culture qui se vit comme un partage, j'ai pris conscience de l'impact du toucher dans les hammams et de la magie opérée par les savants dosages d'huiles aromatiques ou essentielles. Après une expérience d'animation en gériatrie, j'ai développé de nombreux ateliers autour des cinq sens à travers des ateliers de pâtisserie, des rencontres autour de parfums et des soins esthétiques. J'ai pu constater l'impact des activités sensorielles sur les malades atteints de troubles cognitifs.
Research on marital status-gender differences in later-life trajectories of cognitive functioning is scarce. Drawing on seven waves of data from the Hispanic Established Population for the Epidemiologic Study of the Elderly, this research uses growth curve models to examine later-life dynamics of cognitive functioning among married and widowed older men and women of Mexican descent (aged 65+; N = 3329). The findings demonstrate that the widowed, regardless of gender, had lower initial levels of cognition but a less steep cognitive decline across waves, compared to married men. Age and socioeconomic resources accounted for these marital status differences in levels and rates of change in cognitive functioning completely among widowed men and partially among widowed women. Moreover, net of all the factors, married women had a slower cognitive decline than married men. This study also shows that health and social integration might shape cognitive functioning among older adults of Mexican descent.
Plusieurs CSSS du Québec réfléchissent sur l’organisation des soins et services en santé mentale pour la clientèle âgée afin de mieux les desservir. Certains ont souligné leur intérêt à implanter un modèle organisationnel de services en santé mentale qui s’apparente à celui du CSSS Cavendish-CAU. Ce modèle, en place depuis plus d’une dizaine d’années, fut développé grâce à l’expertises cliniques et aux meilleures pratiques dans le domaine. Avant d’exporter ce modèle novateur de services, il apparaissait important d’analyser son évolution à travers le temps. Une analyse détaillée de plusieurs sources de données (ex. documents de travail, entrevues individuelles, focus groups, etc.) a permis de constater que les services imaginés en 1999 ont passablement changés. Cette analyse souligne plusieurs transformations positives telles que l’amélioration du continuum de soins, l’augmentation et la diversification du panier de services, mais également des changements de paradigmes et de pratiques sont questionnables. Le Plan d’action (2005) du MSSS a évacué deux concepts fondamentaux des services spécialisés en santé mentale 60 ans et plus (SSSM60+), soit l’autonomie psychosociale et les comportements à risques qui sont à la base d’une intervention plus sociale que médicale. Une attention particulière doit être accordée à ces concepts afin de les remettre à l’avant plan dans l’offre de services.
Purpose: The objective of this pilot study is to evaluate the (1) applicability of a 15-hour attending-taught psychoeducational intervention in a retrospective cohort and (2) feasibility of a trainee-taught intervention in a prospective cohort of patients with gynecologic cancer to help manage cancer-related cognitive impairment (CRCI).
Methods: Adults with any stage gynecologic cancer who completed chemotherapy and reported cognitive complaints were eligible. Additionally, the screening criteria of Functional Assessment of Cancer Therapy–Cognition (FACT-Cog) perceived cognitive impairment (PCI) subscale score <59 was used in the prospective cohort. Validated patient-reported outcomes including FACT-Cog and Patient-Reported Outcomes Measurement Information System (PROMIS) Applied Cognition Abilities and General Concerns were measured before and after the intervention.
Results: Twelve patients underwent an attending-taught intervention between 2011 and 2014. Significant improvements in mean FACT-Cog PCI (+6.1, P < .048), quality of life (+2.4, P = .04), and total score (+9.8, P = .03) were demonstrated, while there was no significant change in mean FACT-Cog perceived cognitive abilities. Ten patients underwent a trainee-taught intervention in 2017. No significant changes in mean FACT-Cog subscale or total scores were seen. Significant improvements in PROMIS Applied Cognition Abilities (+8.2, P = .01) and PROMIS Applied Cognition General Concerns were demonstrated (-8.0, P < .01).
Conclusions: Our psychoeducational intervention demonstrates applicability to patients with gynecologic cancer reporting CRCI and supports the feasibility of more widespread training based on improvements in validated patient-reported outcomes related to cognition.
OBJECTIVES: Given the limited evidence regarding the longitudinal impact of widowhood on cognitive function in later life, the present study aimed to investigate the longitudinal effect of widowhood status on cognitive change among Korean older adults.
METHODS: The study sample was drawn from a nationally representative data set, the Korean Longitudinal Study of Ageing (KLoSA); it consisted of 3,660 Korean adults aged 60 and over who were married at baseline. Our dependent variable, cognitive function, was measured by the Korean version of the Mini-Mental State Examination (K-MMSE). Widowhood status was measured with the combination of widowhood status and duration. Growth curve models were constructed using five waves of the KLoSA (2006-2014) to examine the longitudinal trajectories of cognitive changes.
RESULTS: In the unadjusted model, widowed older adults had significantly lower cognitive function than their nonwidowed counterparts regardless of widowhood duration. Adjusting for covariates, results from the growth curve models showed that widowed older adults with widowhood duration 4 to 6 years had a significantly steeper decline in cognitive function than nonwidowed older adults (P < 0.05).
CONCLUSIONS: These findings suggest that widowhood is detrimental for late-life cognitive function. Further research is required to understand the mechanisms underlying this relationship. Policy and practice implications are discussed according to the cultural context.
Cognitive decline and dementia have become major concerns for many individuals reaching later life within contemporary Western societies. This fear of decline is central to the social divide between the third age embodying ideals of maintained health, activity and lifestyle choices, and the fourth age, a social imaginary encompassing the irreversible decline associated with ageing. In this article, we explore how brain-training technologies have become successful by relying on tensions between the third and fourth ages. We review current debates on the concepts contained in brain training and examine the emphasis on the moral virtue of ‘training the brain’ in later life as an extension of fitness and health management. We underline the limited consideration given to social positioning within old age itself in the literature. We further argue that using brain-training devices can support a distancing from intimations of dementia; a condition associated with an ‘ageing without agency’. Drawing on Bourdieu, we use the concept of distinction to describe this process of social positioning. We discuss the impact that such ‘technologies of distinction’ can have on people with dementia by ‘othering’ them. We conclude that the issue of distinction within later life, particularly within the field of cognitive decline, is an important aspect of the current culture of active cognitive ageing.
Purpose: Advance care planning (ACP) performed by regular staff, which also includes patients with cognitive impairment and their next of kin, is scarcely studied. Thus, we planned an implementation study including key stakeholders (patients, next of kin, and health care personnel) using a whole-ward/system approach to ACP. We explored how they experienced ACP and its significance.
Patients and methods: This qualitative study is part of a mixed-method implementation study of ACP. In four nursing homes, we did qualitative interviews and audio-recordings of meetings. We completed 20 individual semistructured interviews with participants soon after ACP conversations. The interviews included patients with cognitive impairment, their next of kin, and health care personnel. We also conducted four focus group interviews with staff and managers in the nursing homes and audio-recorded four network meetings with the project teams implementing ACP.
Results: All participants appreciated taking part in ACP. Patients and next of kin focused more on the past and present than future treatment preferences. Still, ACP seemed to contribute to a stronger patient focus on end-of-life conversations. More generally, ACP seemed to contribute to valuable information for future decision-making, trusting relations, improved end-of-life communication, and saving time and resources.
Conclusion: Safeguarding a strong patient focus on ACP and fostering a person-centered care culture in nursing home wards seem to be achievable through implementation of ACP that includes regular staff, patients with cognitive impairment, and their next of kin.