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.
The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
Ce récit documente comment des malades sont morts en FaceTime pendant l’épidémie de Covid. À partir d’une enquête de terrain que j’ai commencée en janvier 2020 dans le service de réanimation d’un hôpital de la côte Ouest des États-Unis, je raconte l’apparition de la Covid-19, la séparation des malades de leurs familles, la mort vécue sur l’écran des téléphones mobiles, ainsi que les différentes façons d’agir des soignants face à cette situation que, tous, s’accordèrent à trouver « horrible ».
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COVID-19 has truly affected most of the world over the past many months, perhaps more than any other event in recent history. In the wake of this pandemic are patients, family members, and various types of care providers, all of whom share different levels of moral distress. Moral conflict occurs in disputes when individuals or groups have differences over, or are unable to translate to each other, deeply held beliefs, knowledge, and values. Such conflicts can seriously affect healthcare providers and cause distress during disastrous situations such as pandemics when medical and human resources are stretched to the point of exhaustion. In the current pandemic, most hospitals and healthcare institutions in the United States have not allowed visitors to come to the hospitals to see their family or loved ones, even when the patient is dying. The moral conflict and moral distress (being constrained from doing what you think is right) among care providers when they see their patients dying alone can be unbearable and lead to ongoing grief and sadness. This paper will explore the concepts of moral distress and conflict among hospital staff and how a system-wide provider wellness programme can make a difference in healing and health.
Dans le contexte de confinement, notre mise en place de visioconférence de résidents auprès des familles et du psychologue traduit la sollicitude des équipes vis-à-vis des résidents. Cependant, le confinement a réactivé les angoisses archaïques emboîtées de l'ensemble du corps social, des soignants, des familles et des résidents en Ehpad, empêchant la prise en compte des adaptations nécessaires et différenciées selon le niveau de dépendance psychique.
Avec le confinement, les individus ont été tenus à distance physique les uns des autres et ont donc connu un isolement sans précédent, que cet isolement soit strictement individuel ou bien collectif. Chacun a donc été appelé à mobiliser ses propres capacités, ses propres ressources pour "tenir" dans un contexte d'isolement relatif et sans pouvoir se déplacer. Les professionnels en charge des personnes vulnérables ont largement utilisé les "technologies de la distance", comme le téléphone, pour maintenir les relations d'aide et de soin.
In the midst of COVID-19, the nation has become increasingly aware of the impact of social isolation on physical, social, spiritual, and psychological health. Older adults, especially those who are nearing the end of life, are already at higher risk of the detrimental effects of social isolation and loneliness. Novel social distancing rules imposed by governments and agencies during the COVID-19 pandemic have caused older adults to experience a degree of social isolation and loneliness that is unprecedented. This article highlights aspects of the social isolation and loneliness literature. Three cases of elderly patients who required medical care during the COVID-19 pandemic are presented. Common themes of factors contributing to social isolation in each of the health care delivery settings are described, and opportunities for creative interventions by health care providers are identified. As the pandemic continues to unfold and evolve, providers should aim to regularly assess patient risk of isolation and be proactive in preventing negative effects. Additionally, what is learned from health care providers' experiences delivering palliative care during a pandemic can be incorporated into daily practice as social isolation and loneliness are long-standing challenges for the elderly population.
The COVID-19 pandemic has resulted in unprecedented levels of social isolation which has negatively impacted older patients in particular on multiple levels. We present a case of an older patient with several complex psychosocial issues who was hospitalized and died from COVID-19. The social isolation required during the pandemic compounded patient and family stressors and diminished the patient's access to clinicians and to his usual support network and coping strategies. We describe how technology and tele-palliative care were utilized to reconnect the patient with clinicians and family and to provide clinical care that enhanced coping skills and support. Using telemedicine to restructure the approach to care was crucial in improving multiple domains of care and can be considered a resource for caring for older adults, especially during the challenging times brought on by the COVID-19 pandemic.
Due to isolation and social distancing to maintain patient and staff safety during the COVID-19 pandemic, an alternative to face-to-face interaction was needed. Nurses facilitated critical patient-family communication. Video conferencing applications aided socially distanced families to connect with dying loved ones. This article will explore the use of these popular apps.
La pandémie à COVID-19 touche particulièrement les personnes les plus âgées et expose à un risque de mortalité les plus fragiles. Des mesures de confinement, de distanciation sociale et d’isolement ont été mises en place pour limiter la propagation virale. S’il existe un rationnel clair pour réduire la contagiosité de l’infection par ce biais, les conséquences néfastes de cet isolement social, en particulier pour cette population hétérogène, âgée et fragile sont difficiles à appréhender. En particulier, la rupture avec les structures habituelles de support et de soutien à domicile ou en institution, mais aussi le risque d’une diminution de « l’empowerment » de la personne âgée par rapport à ses propres décisions de santé et de vie sociale, imposent une vigilance particulière pour éviter un risque d’âgisme sociétal. Il peut ainsi exister, en regard de cette population particulière, des conflits de valeurs entre protection individuelle et collective, d’une part, et respect de l’autonomie et de l’indépendance, d’autre part. Cet article propose une réflexion éthique de la question du confinement des personnes âgées à risque de fragilités, s’appuyant sur des principes de l’éthique médicale, pour ouvrir les pistes de réflexion qui permettent une approche positive de la vulnérabilité, garante du respect de la dignité de la personne et de l’équité dans l’accès aux soins.
BACKGROUND: The COVID-19 pandemic has aggressively reached the most vulnerable, not only the elderly but also patients with chronic conditions such as cancer. In this study, we present the outlines of ethical thinking and the measures implemented to try to respect our basic values of care, in the specific environment of an oncology hospital.
METHODS: Our ethics committee created an ethical watch system based on 24/7 shifts to assist practitioners in their daily decisions. We discuss the challenges faced by patients with cancer during the pandemic, such as access to critical care and ethical dilemmas in the context of resource scarcity, as well as the issue of isolation of patients. We also debate the restrictions in access to oncology care in a health context strongly 'prioritised' against COVID-19.
RESULTS: In all areas of an ethical dilemma, either for sorting out access to critical care or for the dramatic consequences of prolonged isolation of patients, our common thread was our attempt to protect, whenever possible, the principles of deontological ethics by strictly resisting utilitarian pressure. Respecting democratic health decision-making processes is a cornerstone of ethically relevant decisions, including in the context of a sanitary crisis.
CONCLUSION: The role of an ethics committee related to real-life situations includes not only a reflexive perspective in respect of fundamental principles, but also the help to enlighten and resolve ethical dilemmas in complex clinical situations. This ethical watch team assists physicians in decision-making, promoting the supportive and palliative dimension of care with a holistic approach.
L’Espace national de réflexion éthique sur la maladie d’Alzheimer et les maladies neuro-dégénératives EREMAND, animé par l’Espace de réflexion éthique de la région Île-de-France, a conduit au début de l’épidémie de Covid-19 une enquête nationale pour identifier les difficultés rencontrées par les professionnels du grand âge et de l’autonomie, les familles et les bénévoles, et les initiatives que ceux-ci ont mises en oeuvre. Sept difficultés
majeures sont identifiées : l’isolement induit par l’interdiction des visites, le manque de matériels de protection et de tests, les difficultés des personnes en difficulté cognitive à comprendre les mesures pour éviter la propagation de l’épidémie, la soutenabilité de la surcharge de travail pour les professionnels, l’inquiétude des familles des résidents, les
situations complexes à domicile et les difficultés d’accès aux soins. Quatre initiatives sont mises en oeuvre : information et formation des équipes, compensation de l’interruption des visites, concertations et échanges entre professionnels, actions au bénéfice des personnes vivant à domicile. L’épidémie de Covid-19 est venue percuter le secteur du grand
âge à un moment très particulier de son histoire, de plusieurs années d’effort du secteur pour se réinventer autour de valeurs fortes. Elles ont été des ressources au cours de cette période de crise. Une ambitieuse loi grand âge et autonomie, apparaît dès lors, comme une nécessité.
The COVID-19 pandemic has disproportionately affected older adults, not only through greater risk of illness and death but also by exacerbating underlying distress related to aging and mortality. Older adults' struggles with loneliness, fear of dying, and the sequelae of untreated medical conditions are viewed through the lens of anticipatory grief, and coping and treatment strategies are offered.
Les généralistes au cours du confinement ont été très peu entendus. Les injonctions officielles répétées et mentionnées sur les autorisations de sortie étaient : n’allez pas chez votre généraliste si vous avez de la fièvre, ne vous rendez dans son cabinet qu’en cas d’urgence. Alors que les services d’urgence étaient débordés, (dont certains services de proximité qui ont été appauvris de façon drastique dans les années précédentes pour des raisons dites « économiques ») l’ARS et la CPAM donnaient alors la consigne aux généralistes de favoriser la téléconsultation devant la pénurie de masques (18 masques par semaine par généraliste à partager avec ses patients). Si la téléconsultation peut être utile pour le suivi des consultations et l’ interrogatoire des patients, elle ne remplacera jamais un examen clinique, ce qu’exprime un généraliste en la désignant comme du « secrétariat à distance ». Il était bien évident que très mal équipés, les généralistes étaient démunis devant une épidémie de cette ampleur.
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Objectives: Advance care planning (ACP) typically comprises formal preparations (i.e., living will and/or durable power of attorney for health care) and informal discussions with family members and health care providers. However, some people complete formal documents without discussing them with others. If they become incapacitated, their appointed decision makers may lack guidance on how to interpret or enact their formal wishes. We document the prevalence and correlates of this partial approach to ACP.
Method: Using multinomial logistic regression models and data from a U.S. sample of 4,836 older adults in the 2018 wave of the National Health and Aging Trends Study (NHATS), this brief report evaluated associations between social integration indicators and the odds of completing (a) both discussions and formal plans (two-pronged ACP), (b) discussions only, (c) no ACP, and (d) formal ACP only (reference category). We adjust for demographic and health characteristics established as correlates of ACP.
Results: A minority (15%) of NHATS participants reported formal plans without having discussed them. Indicators of social isolation (e.g., smaller social networks and fewer social activities) increased the odds of engaging in formal planning only compared to two-pronged ACP. Socioeconomic disadvantage and probable dementia reduced the odds of having end-of-life conversations, whether as one’s only preparation or in tandem with formal preparations.
Discussion: Socially isolated persons are especially likely to do formal planning only, which is considered less effective than two-pronged ACP. Health care professionals should recognize that older adults with few kin may require additional support and guidance when doing ACP.
Older people living alone has been reported to be socially isolated and suffering from loneliness. Although spiritual care is a core element of end-of-life care for older people, a clear-cut definition of spirituality has not been established yet. It remains unclear how spirituality is perceived by heath care professionals and how spiritual care is delivered in the end of life. Also, most of the previous studies on perspective of older people living alone targeted women, while very few researches shed light on the experience of older men. The aim of the present study was to investigate the spirituality of older men living alone near the end-of-life. We conducted group interviews targeting 30 care managers and individual in-depth interviews to 15 older men living alone. Qualitative content analysis was used. Five main themes emerged: worthlessness and hopelessness, autonomy and independence, comfort and gratitude, past experiences, and well-being indicator. Our findings provide important additional information that can help clinicians, nurses and care managers achieve better patient-centered care for older men living alone and enhance their dignity. Our investigation found that Japanese older men living alone were enjoying their autonomous status and freedom, despite wide spread negative views of them. Their spiritual health was found to be enhanced through gratitude to everyone with whom they had crossed paths in their life, yearning for the presence of a female companion, and confirming their health measurements were comparative or better than those of others in the same age group.
Rose presented for her first visit to our rural oncology clinic with systolic blood pressure of 220 mm Hg and diastolic 110 mm Hg. She waved my concerns aside with an impatient swipe of her arm. She was there, she wanted me to know, only to talk about her lung cancer.
She cast her steely gaze on me. Did I have her records? I assured her that I did, and that I had done my homework. The records told me that she had first been seen at the tertiary center 2 hours away, where they had established the diagnosis. She had then been referred to me at our rural site to start treatment closer to her home. The disease was locally advanced, stage III, and inoperable. The tertiary center recommended concurrent chemotherapy with radiation or enrollment in a clinical trial.
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As countries are affected by coronavirus disease 2019 (COVID-19), the elderly population will soon be told to self-isolate for “a very long time” in the UK, and elsewhere. This attempt to shield the over-70s, and thereby protect over-burdened health systems, comes as worldwide countries enforce lockdowns, curfews, and social isolation to mitigate the spread of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2).
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BACKGROUND: Social isolation is a risk factor for poor health that influences the well-being older adults.
OBJECTIVE: We compare advance care planning (ACP) engagement of older adults who were severely socially isolated, socially isolated, and not socially isolated.
DESIGN: Cross-sectional analysis of the 2012 National Health and Aging Trends Study (NHATS).
SETTING: United States of America.
PARTICIPANTS: A total of 2015 older adults (aged =65 years) randomly selected from a representative sample of community-dwelling Medicare beneficiaries to participate in an ACP module as part of an annual in-person interview.
MEASUREMENTS: We classified participants in three groups: severely socially isolated, socially isolated, or not socially isolated. ACP refers to three (yes/no) questions regarding whether a participant had a: (1) prior discussion about care preferences in the case of serious illness (EOL Discussion); (2) durable power of attorney (DPOA); and (3) advance directive (AD). We performed logistic regression analyses to examine the association between social isolation and ACP.
RESULTS: Approximately 23% of older adults were either severely socially isolated or socially isolated. Older adults who experienced social isolation were less likely to engage in ACP than those who were not socially isolated. In adjusted analysis, older adults who were socially isolated had lower odds of having an EOL discussion (adjusted odds ratio [AOR] = 0.65; 95% confidence interval [CI] = 0.49-0.87) or having a DPOA (AOR = 0.71; 95% CI = 0.53-0.96) compared to those who were not socially isolated.
CONCLUSION: Social isolation is associated with lower engagement in ACP. Clinicians should identify older adults who are at risk for or experience social isolation as they may benefit from targeted ACP efforts.