BACKGROUND: Preparation for an impending death through EOL (end-of-life) discussions and human presence when a person is dying is important for both patients and families.
OBJECTIVE: The aim was to study whether EOL discussions were offered and to what degree patients were alone at time of death when dying from Covid-19, comparing deaths in nursing homes and hospitals.
DESIGN: The national Swedish Register of Palliative Care (SRPC) was used. All expected deaths from Covid-19 in nursing homes and hospitals were compared with, and contrasted to, deaths in a reference population (deaths in 2019).
SETTING AND SUBJECTS: A total of 1346 expected Covid-19 deaths in nursing homes (n=908) and hospitals (n=438) were analyzed.
RESULTS: Those who died were of a more advanced age in nursing homes (mean 86.4 years) and of a lower age in hospitals (mean 80.7 years) (p<0.0001). Fewer EOL discussions with patients were held compared with deaths in 2019 (74% vs. 79%, p<0.001) and dying with someone present was much more uncommon (59% vs. 83%, p<0.0001). In comparisons between nursing homes and hospital deaths, more patients dying in nursing homes were women (56% vs. 37%, p<0.0001) and significantly fewer had a retained ability to express their will during the last week of life (54% vs. 89%, p<0.0001). Relatives were present at time of death in only 13% and 24% of the cases in nursing homes and hospitals, respectively (p<0.001). The corresponding figures for staff were 52% and 38% (p<0.0001).
CONCLUSION: Dying from Covid-19 negatively affects the possibility of holding an EOL discussion and the chances of dying with someone present. This has considerable social and existential consequences for both patients and families.
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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Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
In this personal reflection, as a Family Medicine resident at an Academic Center in Northeast Florida, as well as being a chronic illness patient myself, I explore the notion of dying alone and away from family. Although COVID-19 has changed the practice of medicine in many ways, prior to that, and before the instillation of hospital no-visitor policies and stay at home orders, I experienced a case of a patient dying alone in the hospital. These chronicles that case and the impact it had on me afterward in regard to my own family and how I hope the future of medicine can address this.
OBJECTIVES: Little is known about the relationship between loneliness and end-of-life (EOL) experience including symptom burden, intensity of care, and advance care planning among older adults.
DESIGN: Secondary analysis of the Health and Retirement Study (HRS).
SETTING: Population based.
PARTICIPANTS: Decedents older than 50 years who died between 2004 and 2014 (n = 8700). Exclusions included those who were ineligible for surveys assessing loneliness (n = 2932) or had missing or incomplete loneliness or symptom data (n = 2872).
MEASUREMENTS: Individuals were characterized as lonely based on responses to the three-item Revised University of California, Los Angeles Loneliness Scale in the most recent HRS survey before death. Outcomes were proxy reports of total EOL symptom burden, intensity of EOL care (eg, late hospice enrollment, place of death, hospitalizations, use of life support), and advance care planning. Results were expressed as adjusted odds ratios (aORs) with 95% confidence intervals (CIs).
RESULTS: One-third of 2896 decedents (n = 942) were lonely. After adjusting for demographics, socioeconomic status, multimorbidity, depressive symptoms, family and friends, and social support, loneliness was independently associated with increased total symptom burden at EOL (ß = .13; P = .004). Compared with nonlonely individuals, lonely decedents were more likely to use life support in the last 2 years of life (35.5% vs 29.4%; aOR = 1.36; 95% CI = 1.08-1.71) and more likely to die in a nursing home (18.4% vs 14.2%; aOR = 1.78; 95% CI = 1.30-2.42). No significant differences in other measures of intense care (late hospice enrollment, number of hospitalizations, or dialysis use) or likelihood of advance care planning were observed.
CONCLUSION: Lonely older people may be burdened by more symptoms and may be exposed to more intense EOL care compared with nonlonely people. Interventions aiming to screen for, prevent, and mitigate loneliness during the vulnerable EOL period are necessary.
OBJECTIVE: Providing care to a loved one with cancer places demands on caregivers that result in changes to their daily routines and disruptions to their social relationships that then contribute to loneliness. Though caregivers' psychosocial challenges have been well studied, loneliness - a determinant of health - has not been well studied in this population. This narrative review sought to describe the current evidence on loneliness among caregivers of cancer patients. We aimed to (1) define loneliness, (2) describe its prevalence, (3) describe the association between loneliness and health outcomes, (4) describe risks and consequences of loneliness among cancer caregivers, (5) identify ways to assess loneliness, and (6) recommend strategies to mitigate loneliness in this unique population.
METHOD: We used evidence from articles listed in PubMed, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases, book chapters, and reports. Articles were reviewed for the following inclusion criteria: (1) published in English, (2) caregivers of cancer patients, (3) loneliness as a study variable, and (4) peer-reviewed with no restriction on the timeframe of publication. Caregivers were defined as relatives, friends, or partners who provide most of the care and support for someone with cancer.
RESULTS: Eighteen studies met inclusion criteria and were included in the analysis. Caregivers' experiences of loneliness can contribute to negative effects on one's social, emotional, and physical well-being. Social support interventions may not be sufficient to address this problem. Existing recommendations to mitigate loneliness include cognitive and psychological reframing, one-on-one and group therapy, befriending, resilience training, and technology-based interventions.
SIGNIFICANCE OF RESULTS: Limited attention to loneliness in cancer caregivers poses a twofold problem that impacts patient and caregiver outcomes. Interventions are critically needed to address loneliness as a determinant of health in caregivers, given their pivotal role in providing care and impacting health outcomes for people with cancer.
La pratique de l'assistance spirituelle en milieu hospitalier consiste, selon les textes législatifs, à répondre aux besoins spirituels du patient. Mais l'attente qu'éprouve un patient en fin de vie ne peut se réduire ni à un pur besoin, ni à un pur désir. A partir d'un travail anthropologique, philosophique et d'analyse des dialogues d'accompagnement, les notions d'hospitalité, de silence, de soin, de désir et d'éveil éclairent cette recherche. La présence siliencieuse répond en premier lieu à un appel exprimé par le patient. Cette hospitalité est un espace ouvert à une reconnaissance mutuelle de la vulnérabilité présente dans l'altérité. Le soin spirituel met en jeu le courage d'un travail intérieur. Il représente un secours capable de faire basculer la souffrance en clarté même en fin de vie ; il est une invitation au repos, à la confiance. Seul le silence peut signifier au patient, la nature de ce souffle qui l'habite et le transcende. Dans son accueil de l'impuissance, la présence silencieuse, comme soin spirituel, révèle la capacité d'éveil de la vie du patient jusqu'au dernier souffle comme un don.
Les services funéraires sont de plus en plus sollicités pour prendre soin des disparus et leur redonner vie et corps. Les mouvements psychiques qui accompagnent ces soins ont longtemps été déniés voire occultés. Pourtant il ne fait pas de doute que la rencontre avec le cadavre mobilise chez ceux qui y sont confrontés une dynamique subjective dont la logique est régie par l’émergence d’un monde fantasmatique propre à chacun. Les auteurs proposent d’explorer à partir d’une écoute clinique les enjeux de cette dynamique et le vécu de ces professionnels qui restent souvent livrés à leur propre solitude.
People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.
OBJECTIVES: This study examined trajectories of emotional functioning in three domains (depressive symptoms, emotional and social loneliness) for individuals who experienced spousal bereavement, and investigated cross-domain adaptation. We hypothesized that emotional difficulties after bereavement would be more detectable in emotional loneliness than depressive symptoms or social loneliness.
METHOD: Using latent class growth analysis, we modelled changes in depressive symptoms, emotional loneliness and social loneliness from 12 years pre- to 12 years post-bereavement on data from 686 older adults to identify trajectories indicating adaptive and maladaptive functioning in each domain.
RESULTS: Most participants reported depressive symptoms below the clinically relevant threshold by showing a resilient (15.5%) or a slightly elevated (53.5%) trajectory post-bereavement. One-third (31%) reported clinically relevant depressive symptoms. More than half of the sample reported emotional loneliness post-bereavement, varying form prolonged (17%), increasing and prolonged (28.3%), and chronically high (8.9%) levels. Remaining participants displayed resilience (13.5%) or recovery (32.3%). Social loneliness showed four trajectories: very low and resilient (43.3%), low and resilient (27.5%), increasing (20.2%), and chronically high (9%) levels. One third of participants maintained adaptive, whereas 12% displayed maladaptive, functioning across all domains post-bereavement.
DISCUSSION: An increase in emotional loneliness was the most commonly observed change after spousal bereavement. This highlights the central role of emotional loneliness in depression after bereavement.
We investigate how daughters' feelings of loneliness are impacted when widowed parents develop health limitations, and when daughters take on personal care tasks in response. Using longitudinal data from daughters of widowed parents drawn from the French Family and Intergenerational Relationships Study (ERFI, 1485 observations nested in 557 daughters), we assess (a) whether health limitations of widowed parents are associated with daughters' feelings of loneliness regardless of whether or not daughters provide personal care and (b) whether there is an effect of care provision on loneliness that cannot be explained by parental health limitations. Fixed effect regression analyses show that widowed parents' health limitations were associated with raised feelings of loneliness among their daughters. No significant additional effect of providing personal care to a widowed parent was found. Prior research on the impact of health limitations of older parents on the lives of their adult-children has focused mostly on issues related to informal caregiving. Our findings suggest that more attention to the psychosocial impact of parental health limitations-net of actual caregiving-on adult children's lives is warranted.
This study explores how Danish students experience returning to school following parental bereavement. Eighteen focus group interviews with 39 participants aged 9 to 17 years were conducted. All participants had experienced the loss of a primary caregiver. Data collection was divided into two phases. In Phase I, 22 participants from four grief groups were interviewed 4 times over the course of a year. During Phase II, confirmatory focus groups were undertaken with the 17 participants. This article explores findings related to the four themes of initial school response, long-term support, challenges within the class, and academic challenges. The study found that (a) students struggle to reconnect with classmates following the return to school and often feel alone, (b) schools fail to have guidelines in place for what they are allowed to do if becoming sad the class, and (c) schools seem to forget their loss as time passes.
Objective: This study identified the predictors of incident loneliness in a group of seriously ill older adults (aged 65+) receiving home care.
METHOD: Existing data collected with the Resident Assessment Instrument for Home Care (RAI-HC) were utilized. A cohort of clients (N = 2,499) with two RAI-HC assessments and no self-reported loneliness at time 1 were included. Self-reported loneliness, upon reassessment, was the outcome of interest. Clients with a prognosis of less than six months or severe health instability were included.
RESULTS: The average length of time between assessments was 5.9 months (standard deviation = 4.10). During that time, 7.8% (n = 181) of the sample developed loneliness. In a multivariate regression model, worsening symptoms of depression, a decline in social activities, and not living with a primary caregiver all increased the risk of loneliness.
SIGNIFICANCE OF RESULTS: These results highlight how changes in psychosocial factors over time can contribute to loneliness, which can inform clinicians as they seek to identify those who may be at risk for loneliness.
The discourse of dying alone is negatively weighted and models of a good death identify not dying alone as a key outcome. Understanding why dying alone is viewed negatively and its effects on care is a priority. In separate focus groups with long-term care residents, family caregivers, and staff, we identified evidence for four different perspectives on the importance of presence at the time of death. However, while each individual had their own unique perspective on dying alone, the predominant view expressed across respondent groups was that having human connection near the end of one’s life was important.
The number of parents who have lost their only child (PLOCs) has increased annually with the implementation of the birth control policy in mainland China. This study aimed to investigate the mental health status of PLOCs and the influence of social support and resilience. Study 1 recruited 100 PLOCs and 88 nonbereaved parents, and compared differences in depression, anxiety, and loneliness. Study 2 investigated the influence of social support and resilience on the mental health of PLOCs via a mediating model. Results indicate that PLOCs reported more anxiety and depression symptoms than nonbereaved counterparts. Perceived close family support, objective support, and resilience negatively predicted anxiety and depression. In addition, perceived close family support was found to influence mental health via resilience. The current findings reveal that losing an only child has long-term negative impacts on the mental health of PLOCs. However, perceived close family support and objective support can protect their mental health either directly or indirectly via resilience.
Les dernières grandes lois promulguées fin 2015 et début 2016 (loi d'adaptation de la société au vieillissement et loi de modernisation du système de santé) ont confirmé le soutien par les pouvoirs publics du "domicile, en tant qu'indication de première intention pour le soin et l'accompagnement des personnes vulnérables". Ce numéro spécial permet d'appréhender le domicile dans toute sa diversité. Le lecteur aura accès à : - Une tribune de Serge Guérin, sociologue, "Penser la société de la longévité pour sortir de l'opposition domicile/maison de retraite" ; - Des interviews de Florence Leduc, Présidente de l'association Française des aidants, et d'un adhérent du champ du domicile qui nous parle des questions éthiques liées à ce sujet ; - Des témoignages sur des expériences innovantes comme l'EHPAD hors les murs ou le projet "voisinons ensemble" ; - Le point de vue des fédérations du domicile et des partenaires libéraux sur l'intervention à domicile d'ici 2028 ; - Les préconisations de la FEHAP.
Origine : BDSP. Notice produite par EHESP qFR0xGp8. Diffusion soumise à autorisation
L’histoire de Jeanne nous parle non seulement du sentiment de solitude et des blessures invisibles d’un groupe familial mais aussi d’une sollicitude possible des soignants et d’une famille envers une personne âgée désespérée qui va y puiser, à la fin de sa vie, un sentiment de sécurité et peut-être une consolation. La confrontation à des histoires de vie compliquées, chaotiques, parfois très éloignées des représentations idéalisées de familles exemplaires, unies et solidaires, peut être une source de réflexion et d’enrichissement personnel et professionnel.