La fin de vie est devenue un enjeu important pour les EHPAD. Il est donc nécessaire de prendre son temps dans l'accompagnement des personnes en fin de vie, afin d'effectuer une prise en soins de qualité. Ce n'est qu'à ce prix qu'elle pourra atteindre son objectif, et permettre aux soignants d'être dans un idéal de soins.
What might the good life amount to at the margins of life? Taking our point of departure in Jonathan Lear’s notions of ontological breakdown and radical hope as well as the phenomenology of lived time, we explore hope within the institutional aging process in Denmark. Drawing on two ethnographic cases, Vagn and Thea, we propose a phenomenological and responsive hope emerging within complex temporalities. This is a relational hope to be included among the living, to be a human being among others. Importantly, it is neither optimistic nor naive but rather hope practiced in the face of devastating life circumstances.
L'interprofessionnalitéest un des pilliers qui contribuent à l'aide et à l'amélioration des soins donc particulièrement à l'accompagnement des personnes âgées en situation palliative. L'investissement de chacun et l'association des diverses compétences, fait en sorte que les résidents ne sont pas seuls dans cette ultime étape de leur vie et les collaborateurs participent activement à leur accompagnement. Grâce aux échanges, aux réflexions entre collaborateurs, les compétences différentes sont en fait complémentaires et enrichi chacun dans son parcours professionnel : "cela fait de nous ce que nous sommes aujourd'hui" selon Anna, rédactrice de cet article.
Qu'en est-il des personnes atteintes de la maladie d'Alzheimer, qui s'éloignent lentement du lien social ? L'auteur, sociologue, soutient que ces malades se désinvestissent du monde en réduisant leurs facultés mentales. Comment la famille et les soignants peuvent-ils les accompagner dans ce détachement du monde ? Le proche ou le soignant, qui prend le temps de regarder la personne atteinte de la maladie d'Alzheimer, la reconnaît alors dans son humanité et recrée ainsi du lien social.
L'auteure s'interroge sur l'alignement de la vieillesse sur les critères de la jeunesse avec la culture de l'anti ageing. Même sous le concept du "bien vieillir" se cache une norme en termes de santé, d'énergie, d'efficacité, difficile à atteindre pour la plupart des personnes âgées. Cette épreuve sociale s'ajoute à l'expérience du vieillissement et de la fragilité.
La personne qui vieillit, avec ses difficultés plus ou moins grandes, reste le sujet de son histoire et demande à être reconnue comme telle. La rencontre de la personne dans son plus grand dénuement déstabilise fortement. La reconnaissance d'une vulnérabilité récipropre pourrait être garante de la dimension éthique de la relation à l'autre. La vulnérabilité est ainsi du côté de l'interdépendance et de la responsabilité collective.
Context: Older and seriously ill Australians are often admitted to hospital in the last year of their life. The extent to which these individuals have considered important aspects of end-of-life (EOL) care, including location in which care is provided, goals of care, and involvement of others in decision making, is unclear.
Objectives: To determine, in a sample of older and seriously ill Australian inpatients, preferences regarding location in which they receive EOL care and reasons for their choice; who is involved in EOL decisions; disclosure of life expectancy; goals of care; and voluntary-assisted dying.
Methods: Cross-sectional face-to-face survey interviews conducted with 186 (80% consent) inpatients in a tertiary referral center aged 80 years and older; or aged 55 years and older with progressive chronic disease(s); or with physician-estimated life expectancy of less than 12 months.
Results: Home care was preferred (69%), given the perceived availability of family/friends, familiarity of environment, and likelihood of having wishes respected. If unable to make decisions themselves, inpatients wanted family to decide care alone (31%) or with a doctor (49%). Of those who had not discussed life expectancy, 23% wished to. Most (76%) preferred care that maintained quality of life and relieved symptoms. There was some agreement for being sedated at the EOL (63%) and able to access medication to end life (43%).
Conclusion: Most inpatients would prefer EOL care that maintains quality and relieves suffering compared with life extension and to receive this care at home. Family involvement in resolution and documentation of EOL decisions should be prioritized.
OBJECTIVES: To determine the effectiveness of advance care planning (ACP) in frail older adults.
DESIGN: Cluster randomized controlled trial.
SETTING: Residential care homes in the Netherlands (N=16).
PARTICIPANTS: Care home residents and community-dwelling adults receiving home care (N=201; n=101 intervention; n=100 control). Participants were 75 years and older, frail, and capable of consenting to participation.
INTERVENTION: Adjusted Respecting Choices ACP program.
MEASUREMENTS: The primary outcome was change in patient activation (Patient Activation Measure, PAM-13) between baseline and 12-month follow-up. Secondary outcomes included change in quality of life (SF-12), advance directive (AD) completion, and surrogate decision-maker appointment. Use of medical care in the 12 months after inclusion was also assessed. Multilevel analyses were performed, controlling for clustering effects and differences in demographics.
RESULTS: Seventy-seven intervention participants and 83 controls completed the follow-up assessment. There were no statistically significant differences between the intervention (-0.26±11.2) and control group (-1.43±10.6) in change scores of the PAM (p=.43) or the SF-12. Of intervention group participants, 93% completed an AD, and 94% appointed a decision-maker. Of control participants, 34% completed an AD, and 67% appointed a decision-maker (p<.001). No differences in the use of medical care were found.
CONCLUSIONS: ACP did not increase levels of patient activation or quality of life but did increase completion of ADs and appointment of surrogate decision-makers. It did not affect use of medical care.
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.
OBJECTIVES: To elicit decisions that diverse older adults and surrogates perceive as serious, difficult, or important and explore what helped them make those decisions.
DESIGN: Focus groups (N=13) in which participants were asked to recall serious, difficult, or important medical decisions and what helped them make those decisions.
SETTING: Clinics, support groups and senior centers.
PARTICIPANTS: Diverse English- and Spanish-speaking older adults (age: mean 78, range 64-89) and surrogates (age: mean 57, range 33-76) (29% African American, 26% white, 26% Asian or Pacific Islander, 19% Hispanic) (N=69).
MEASUREMENTS: We used thematic analysis to analyze transcripts.
RESULTS: We identified 168 decisions. Older adults from all racial and ethnic groups frequently recalled cancer treatment decisions and decisions about chronic illness management. Surrogates described decisions about transitions in care and medical crises. Older adults valued self-sufficiency and maximizing survival and relied on personal experiences as often as medical advice. In all racial and ethnic groups, surrogates valued avoiding suffering for loved ones.
CONCLUSION: Diverse older adults and surrogates perceive life-threatening illness and day-to-day decisions about chronic disease to be serious, difficult, and important. The surrogates' goal of avoiding suffering of older adults may differ from older adults' priorities of self-sufficiency and maximizing survival. Clinicians should support older adults and surrogates in identifying important and difficult decisions and learn about the values and information sources they bring to decision-making. With this knowledge, clinicians can customize decision support and achieve person-centered care.
BACKGROUND: Older adults prefer comfort over life-sustaining care. Decreased intensity of care is associated with improved quality of life at the end-of-life (EOL).
OBJECTIVES: This study explored the association between advance directives (ADs) and intensity of care in the acute care setting at the EOL for older adults.
METHODS: A retrospective, correlational study of older adult decedents (N = 496) was conducted at an academic medical center. Regression analyses explored the association between ADs and intensity of care.
RESULTS: Advance directives were not independently predictive of aggressive care but were independently associated with referrals to palliative care and hospice; however, effect sizes were small, and the timing of referrals was late.
CONCLUSION: The ineffectiveness of ADs to reduce aggressive care or promote timely referrals to palliative and hospice services, emphasizes persistent inadequacies related to EOL care. Research is needed to understand if this failure is provider-driven or a flaw in the documents themselves.
BACKGROUND: Patient-centered care for older adults with CKD requires communication about patient's values, goals of care, and treatment preferences. Eliciting this information requires tools that patients understand and that enable effective communication about their care preferences.
METHODS: Nephrology clinic patients age = 60 years with stage 4 or 5 nondialysis-dependent CKD selected one of four responses to the question, "If you had a serious illness, what would be important to you?" Condensed versions of the options were, "Live as long as possible;" "Try treatments, but do not suffer;" "Focus on comfort;" or "Unsure." Patients also completed a validated health outcome prioritization tool and an instrument determining the acceptability of end-of-life scenarios. Patient responses to the three tools were compared.
RESULTS: Of the 382 participants, 35% (n=134) selected "Try treatments, but do not suffer;" 33% (n=126) chose "Focus on comfort;" 20% (n=75) opted for "Live as long as possible;" and 12% (n=47) selected "Unsure." Answers were associated with patients' first health outcome priority and acceptability of end-of-life scenarios. One third of patients with a preference to "Focus on comfort" reported that a life on dialysis would not be worth living compared with 5% of those who chose "Live as long as possible" (P<0.001). About 90% of patients agreed to share their preferences with their providers.
CONCLUSIONS: Older adults with advanced CKD have diverse treatment preferences and want to share them. A single treatment preference question correlated well with longer, validated health preference tools and may provide a point of entry for discussions about patient's treatment goals.
BACKGROUND: Half of nursing home residents (NHR) suffer from dementia. End-of-life hospitalizations are often burdensome in residents with dementia. A systematic review was conducted to study the occurrence of hospitalizations at the end of life in NHR with dementia and to compare these figures to NHR without dementia.
METHODS: A systematic literature search in MEDLINE, CINAHL and Scopus was conducted in May 2018. Studies were included if they reported proportions of in-hospital deaths or hospitalizations of NHR with dementia in the last month of life. Two authors independently selected studies, extracted data, and assessed quality of studies.
RESULTS: Nine hundred forty-five citations were retrieved; 13 studies were included. Overall, 7 studies reported data on in-hospital death with proportions ranging between 0% in Canada and 53.3% in the UK. Studies reporting on the last 30 days of life (n = 8) varied between 8.0% in the Netherlands and 51.3% in Germany. Two studies each assessed the influence of age and sex. There seem to be fewer end-of-life hospitalizations in older age groups. The influence of sex is inconclusive. All but one study found that at the end of life residents with dementia were hospitalized less often than those without (n = 6).
CONCLUSIONS: We found large variations in end-of-life hospitalizations of NHR with dementia, probably being explained by differences between countries. The influence of sex and age might differ when compared to residents without dementia. More studies should compare NHR with dementia to those without and assess the influence of sex and age.
AIMS: Older patients with life-limiting illness (LLI) and limited life expectancy (LLE) continue to receive potentially inappropriate medicines, consequently deprescribing is often necessary. However, deprescribing in this population can be complex and challenging. Therefore, we aimed to investigate the evidence for outcomes of deprescribing interventions in older patients with LLI and LLE.
METHODS: Studies on deprescribing intervention and their outcomes in age =65 years with LLI and LLE were searched using PubMed, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and Google Scholar. Medication appropriateness was primary outcome, while clinical and cost-related outcomes were secondary. Eligibility, data extraction and quality assessment were followed by a narrative synthesis of data.
RESULTS: Of nine studies (1371 participants), three reported on primary outcome. One study showed a significant reduction in medication inappropriateness by 34.9% (p<0.001) from admission to close-out, the second achieved 29.4% (p<0.001) and 15.1% (p=0.003) reduction at 12 and 24 months respectively. The third reported that their intervention stopped (17.2%) and altered the dose (2.6%) of high risk medications. Commonly reported clinical outcomes were mortality (n=3), quality of life (n=2) and falls (n=2). Outcomes in terms of cost were reported as overall cost (n=2), medication cost (n=1) and health care expenditure (n=1).
CONCLUSIONS: Our findings suggest that deprescribing in older patients with LLI and LLE can improve medication appropriateness, and has potential for enhancement of several clinical outcomes and cost savings, but the evidence needs to be better established.
This study is on the effects of spousal loss among older adults who continue to live independently after bereavement. Little longitudinal studies focus on this group, which is of special interest, since in many countries, care policy and system reform are aimed at increasing independent living among older adults. Using longitudinal data from a Dutch public data repository, we investigate the effects of spousal loss on psychological well-being, perceived quality of life, and (indication of) yearly health-care costs. Of the respondents who had a spouse and were living independently (N = 9,400) at baseline, the majority had not lost their spouse after 12 months (T12, n = 9,150), but 2.7% (n = 250) had lost their spouse and still lived independently. We compared both groups using multivariate regression (ordinary least squares) analyses. The results show that spousal loss significantly lowers scores on psychological well-being and perceived quality of life, but we found no effect on health-care costs.
INTRODUCTION: Two-thirds of chronically ill patients do not have an advance directive. The primary aim of this study was to develop an intervention to increase the documentation of advance directives in elderly adults in an internal medicine resident primary care clinic. The secondary aims were to improve resident confidence in discussing advance care planning and increase the number of discussions.
METHODS: The study was a pre- and postintervention study. The study intervention was a 30-minute educational session on advance care planning. Study participants were patients aged 65 years and older who were seen in an internal medicine residency primary care clinic over a 6-month period and internal medicine residents. Clinic encounters were reviewed for the presence of advance care planning discussions before and after the intervention. Resident confidence was measured on a Likert scale.
RESULTS: Two hundred ninety-five eligible patients were seen in the clinic from January 1, 2017, to June 30, 2017, and included in the analysis performed between 2017 and 2018. The mean number of documented advance care planning discussions increased from 2.24 (95% confidence interval [CI]: 1.0-4.9) during the preintervention period to 8.94 (95% CI: 5.94-13.24]) during the postintervention period (P = .0011). Following the intervention, residents overall reported increased confidence in discussing advance care planning.
CONCLUSION: A relatively modest intervention to increase advance care planning discussions is feasible in an internal medicine primary care clinic and can improve the confidence of residents with end-of-life discussion.
This article describes the Lee Geropalliative Caring Model (GCM), a situation-specific theory that guides geropalliative care, defined as the care of older adults in the last 2 years of life. Underpinned by the theory of human caring, the GCM offers a framework for achieving the person/family outcome of well-being by suggesting caring interventions within 4 priority domains: aligning care, keeping safe, comforting body/mind/spirit, and facilitating transitions to persons with late-stage illness, including frailty and dementia. The GCM can be used to inform practice, policy, education, and research.
Proton pump inhibitors (PPIs) have become the agents of choice for acid-related diseases. In some clinical situations, PPI therapy by oral or intravenous route may be difficult especially among elderly and patients in palliative care. Off-label PPI subcutaneous injection could be the last alternative to improve patient relief, despite limited published data. We report a case of linitis plastica, peritoneal carcinomatosis and occlusive syndrome who suffered from painful regurgitations which rapidly improved after subcutaneous pantoprazole. No related adverse effects were observed during PPI therapy. Despite some limitations, this report suggests that off-label subcutaneous pantoprazole could be an interesting alternative route when intravenous infusion may be difficult or harmful for elderly and patients in palliative care. Nevertheless, clinical safety and efficiency data on larger populations are needed to validate this use in such population.
Objectives: To assess the association between receiving the certified care workers’ home care service, which is provided by non-medical professionals prior to a patients’ death and the probability of a home death.
Design: Observational research using the full-time translated number of certified care workers providing home care service per member of the population aged 65 or above, during the year prior to patient’s death per municipality as an instrumental variable.
Setting:: The certified care workers’ home care service covered by the public long-term care insurance (LTCI) system in Japan.
articipants In total, 1 613 391 LTCI beneficiaries aged 65 or above who passed away, except by an external cause of death, between January 2010 and December 2013 were included in the analysis.
Primary outcome measures: Death at home or death at other places, including hospitals, nursing homes and clinics with beds.
Results: Out of all participants, 173 498 (10.8%) died at home. The number of patients who used the certified care workers’ home care service more than once per each month during 1, 2 or 3 months prior to the month of death numbered 213 848, 176 686 and 155 716, respectively. This was associated with an increased probability of death at home by 9.1% points (95% CI 2.9 to 15.3), 10.5% points (3.3 to 17.6) and 11.4% points (3.6 to 19.2), respectively.
Conclusions: The use of the certified care workers’ home care service prior to death was associated with the increased probability of a home death.
Objectives: In 2015 we identified three profiles of adaptation following spousal bereavement: Vulnerables; Copers and Resilients (Spahni, Morselli, Perrig-Chiello, & Bennett, 2015 ). However, adaptation to spousal bereavement is a dynamic process. Thus, we examine the trajectories of the same participants longitudinally over two years. We identify the stability and change in profiles of adaptation to widowhood; probability of stability and change; factors that influence trajectories in profile membership.
Methods: Data stem from a longitudinal questionnaire study of 309 older widowed people. The questionnaire included five measures of well-being, serving as the dependent variables of this analysis, and measures of personal resources and contextual factors, including social support, marital happiness, psychological resilience, and demography. Data was analysed using latent transition analysis of the variables loneliness, hopelessness, depressive symptoms, life satisfaction, and subjective health.
Results: The analysis replicated the three Wave 1 profiles as the best theoretical fit: Vulnerables; Copers; and Resilients. Stability was most common, but some participants moved to more or less adaptive profiles, the former being more frequent. Younger age, longer time since widowhood, new life perspectives facilitated adaptation. Those transitioning to less adaptive profiles were more likely to be women and older. Discussion: The path to adaptation was not linear. Many of the explanatory variables contributed both to positive and negative adaptation. These include previous caring experience, education, psychological resilience and personal strength. This suggests these explanatory variables do not act in isolation but are likely to interact with each other, and with other, yet not measured, factors.