Le jour où Lucien Fléchet meurt, quatre de ses amis à la retraite ont l'idée folle de choisir leur mort. Des plages de Miami aux falaises de l'Algrave en passant par la Suisse et le Cameroun, ils font face à des situations imprévisibles et à des rencontres loufoques.
Background: With increasing cost of healthcare in our aging society, a consistent pain point is that of end-of-life care. It is particularly difficult to prognosticate in non-cancer patients, leading to more healthcare utilisation without improving quality of life. Additionally, older adults do not age homogenously. Hence, we seek to characterise healthcare utilisation in young-old and old-old at the end-of-life.
Methods: We conducted a single-site retrospective review of decedents under department of Advanced Internal Medicine (AIM) over a year. Young-old is defined as 65–79 years; old-old as 80 years and above. Data collected was demographic characteristics; clinical data including Charlson Comorbidity Index (CCI), FRAIL-NH and advance care planning (ACP); healthcare utilisation including days spent in hospital, hospital admissions, length of stay of terminal admission and clinic visits; and quality of end-of-life care including investigations and symptomatic control. Documentation was individually reviewed for quality of communication.
Results: One hundred eighty-nine older adult decedents. Old-old decedents were mostly females (63% vs. 42%, p = 0.004), higher CCI scores (7.7 vs 6.6, p = 0.007), similarly frail with lower polypharmacy (62.9% vs 71.9%, p = 0.01). ACP uptake was low in both, old-old 15.9% vs. young-old 17.5%. Poor prognosis was conveyed to family, though conversation did not result in moderating extent of care.
Old-old had less healthcare utilisation. Adjusting for sex, multimorbidity and frailty, old-old decedents had 7.3 ± 3.5 less hospital days in their final year. Further adjusting for cognition and residence, old-old had 0.5 ± 0.3 less hospital admissions. When accounted for home care services, old-old spent 2.7 ± 0.8 less hospital days in their last admission.
Conclusion: There was high healthcare utilisation in older adults, but especially young-old. Enhanced education and goal-setting are needed in the acute care setting. ACP needs to be reinforced in acute care with further research to evaluate if it reduces unnecessary utilisation at end-of-life.
BACKGROUND: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents' end of life (EOL), dying and death as well as their own advancing age.
AIM: This study aims to analyse the challenges of caregiving adult children regarding their parents' end of life and the related burdens and barriers they report.
MATERIAL AND METHODS: Semi-structured interviews were conducted with 13 caregivers following a theory-based and tested guideline. The computer-aided coding and evaluation followed the structured content analysis approach.
RESULTS: The analysis showed three main themes: 'Confronting EOL', 'Communicating about death and dying' and 'Assisting in the terminal phase'. The respondents commented on burdensome demands and concerns about the future. Further, a strong underlying presence of intra- and interpersonal conflicts relating to EOL became apparent.
DISCUSSION: The results indicate several potential burdens for centenarians' caregiving offspring. They are confronted with a double challenge resulting from the combination of their own advanced age and experiencing the burdens of their parents' very old age. Further, some participants struggled with their own unclear perspective on the future because of the relative but unclear proximity of the parent's death. Multiple conflicts and overlapping conflict dimensions emphasise the potential of the EOL topic to influence the well-being of family caregivers and care recipients.
LIMITATIONS: The convenience sample used for the study may cause limitations, for example, the fact that persons with a formally lower educational status are not represented.
CONCLUSION: The findings suggest that interventions designed for family-related care situations should include topics like 'Finiteness and grief', 'Communicating about dying and death' and 'Decisions and dispositions at EOL'.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Cette "interruption volontaire de vieillesse", c'est avant tout un témoignage touchant pour comprendre le choix et le combat de Jacqueline Jencquel afin d'avoir le droit de terminer sa vie dignement et d'en choisir les conditions. Mourir avant d'être déjà à moitié mort, c'est la vision que défend une femme qui a passionnément aimé la vie et la liberté.
L’auteur raconte sa reconstruction après la mort de Paula, sa compagne. Il témoigne de la douleur du deuil et de sa rencontre avec Chloé, avec qui il
partage désormais sa vie. Ce roman fait suite à "Jardins : saisons".
Marie Dorval travaille dans un établissement où vivent Suzanne, Tonton, Louise, tous âgés et plus ou moins touchées par la démence sénile ou d’autres maladies liées au vieillissement. Elle y croise également Marie-Paule, la fille d’une des résidentes qui vient quotidiennement donner un repas à sa mère. Roman autobiographique sur l’univers des maisons de retraite.
There are many additional considerations when treating older adults with cancer, especially in the context of palliative care. Currently, radiation therapy is underutilised in some countries and disease sites, but there is also evidence of unnecessary treatment in other contexts. Making rational treatment decisions for older adults necessitates an underlying appraisal of the person's physiological reserve capacity. This is termed 'frailty', and there is considerable heterogeneity in its clinical presentation, from patients who are relatively robust and suitable for standard treatment, to those who are frail and perhaps require a different approach. Frailty assessment also presents an important opportunity for intervention, when followed by Comprehensive Geriatric Assessment (CGA) in those who require it. Generally, a two-step approach, with a short initial screening, followed by CGA, is advocated in geriatric oncology guidelines. This has the potential to optimise care of the older person, and may also reverse or slow the development of frailty. It therefore has an important impact on the patient's quality of life, which is especially valued in the context of palliative care. Frailty assessment also allows a more informed discussion of treatment outcomes and a shared decision-making approach. With regards to the radiotherapy regimen itself, there are many adaptations that can better facilitate the older person, from positioning and immobilisation, to treatment prescriptions. Treatment courses should be as short as possible and take into account the older person's unique circumstances. The additional burden of travel to treatment for the patient, caregiver or family/support network should also be considered. Reducing treatments to single fractions may be appropriate, or alternatively, hypofractionated regimens. In order to enhance care and meet the demands of a rapidly ageing population, future radiation oncology professionals require education on the basic principles of geriatric medicine, as many aspects remain poorly understood.
Cause of death is an important outcome in end-of-life (EOL) research. However, difficulties in assigning cause of death have been well documented. We compared causes of death in national death registrations with those reported in EOL interviews. Data were from The Irish Longitudinal Study on Ageing (TILDA), a nationally representative sample of community-dwelling adults aged 50 years and older. The kappa agreement statistic was estimated to assess the level of agreement between two methods: cause of death reported in EOL interviews and those recorded in official death registrations. There was moderate agreement between underlying cause of death recorded on death certificates and those reported in EOL interviews. Discrepancies in reporting in EOL interviews were systematic with better agreement found among younger decedents and where the EOL informant was the decedents' partner/spouse. We have shown that EOL interviews may have limited utility if the main goal is to understand the predictors and antecedents of different causes of death.
BACKGROUND: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people.
METHODS: A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases.
RESULTS: Twenty-three service users and 5 informal carers participated in individual interviews across the cases. Two focus groups were held with an additional 12 participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were 'outsiders,' the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health.
CONCLUSION: These end-of-life care service models operated in a space between the healthcare system and the person's life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact.
BACKGROUND: In recent years the use of time to death (TTD) variables in the modeling of individual health expenditures has been of interest to health economics researchers. The aim of this study was to investigate the effect of age and TTD on hospital inpatient expenditure (HIE).
METHODS: We used a claims database from Iran Health Insurance Organization of Tehran city that includes considerable proportion of Tehran residents and contains information on insured individuals' HIE. We included HIE of all insured decedents (30 to 90 years old) who died during March 2013 and March 2014 (n=1018). No sampling was required. According to the decedents' date of death, we extracted their last 24 months HIE. The period of time March 30, 2011 until March 30, 2014 (3 years) was used to guarantee a full 24 months of observations for decedents. A two-part econometric model was employed to investigate the effect of age, TTD, and some demographic variables on probability and conditional amount of individuals' hospital expenditure. Stata software (version 16.0) was used for data processing and analysis.
RESULTS: Our results demonstrated that the month-based TTDs especially near months before death of decedents (TTD1 to TTD10) significantly affected both probability and conditional amount of HIE. One month before death incurred more HIE than the rest of the months. A further interesting finding is that after including TTD, age variable as a conditional driver of HIE loses its direct effect on decedents' HIE, but age TTD interaction effect on HIE is still positive and statistically significant.
CONCLUSION: The results confirm that TTD as a proxy of mortality indicator has a considerable effect on decedents' HIE. The age variable has not directly affected decedents' HIE but indirectly and through its interaction with TTD has a statistically significant effect on HIE. In addition to age, policy-makers should consider TTD to make better predictions of future HIE.
Vieillir demande de construire de nouvelles normes de vie et de nouvelles valeurs. Cela exige d'être soi, d'avoir le temps et son temps à soi. Les différences du durée entre l'état normal et la crise pathologique tendent à s'amenuiser, et les crises sont de plus en plus fréquentes. C'est le rapport au temps et aux normes de vie qui est profondément modifié quand on vieillit. Réfléchir à la hierarchisation de ses désirs, c'est être conscient de ce qui est essentiel pour soi et ce qui l'est moins.
Dans un EHPAD, Alexandrine, 85 ans, Gisèle, 80 ans et Marie-Thérèse, 100 ans, veulent se venger des hommes qui les ont maltraitées. Dès lors, les histoires du passé et les projets de meurtre s'invitent dans leur quotidien, que ce soit dans les parties de Scrabble, les promenades dans le parc ou les séances de kiné. Marie Laborde décrit les aléas du grand âge à travers ses héroïnes autour desquelles gravitent personnel médical et vieux Casanova lubriques.
Alors que nous tous prenons de l'âge naturellement, parler du vieillissement relève quasiment du tabou. Si d'aventure, on en parle, c'est pour proposer des remèdes suggérant qu'un ensemble d'inconvénients, et pas des moindres, nous attendent. Rien d'étonnant alors que beaucoup de préjugés soient véhiculés sur ce sujet, préjugés auxquels ce livre propose de répondre d'un point de vue psychologique.
Effectivement, la psychologie du vieillissement, vue du côté de la santé – car une psychothérapie vise la santé psychique – est rarement abordée. L'auteur, fait part ici, aussi bien d'exemples émanant de son expérience clinique avec des patients âgés que de la formation des jeunes psychologues à l'Université. Ainsi, nombreux sont les sujets abordés en se plaçant tantôt du côté de la personne concernée, vieillissante ou déjà âgée, tantôt du côté du clinicien.
L'aspect sociétal quant à notre rapport au vieillissement et à la mort est également évoqué et une comparaison avec d'autres cultures est proposée. Le lecteur verra qu'on peut tout à fait parler de l'âge avec humour, car avant tout, la façon dont nous vieillissons nous révèle ce que nous sommes réellement. Nous écouter demande d'acquérir une certaine distance par rapport à nous mêmes et surtout exige de la bonne humeur, source de sérénité.
Ce livre se lit à tout âge, car il n'y a pas d'âge pour vieillir.
Les connaissances anciennes et nouvelles de la notion d'éternité sont regroupées dans cette BD très concise et très claire permettant de comprendre la recherche actuelle et les enjeux philosophiques des choix de recherche par rapport à la mort.
Background: Globally, the number of deaths is estimated to increase to 74 million per year by 2030. Place of death (PoD) is increasingly being recognized as an important aspect of end-of-life care. However, recent trends in PoD in Japan, one of the super-aged societies, are unknown.
Objective: To analyze trends in PoD in Japan over two decades.
Design: Population-based retrospective observational study.
Setting: All deaths reported in Japan, 1998-2017. PoD was defined as hospital, nursing home, or own home.
Results: All Japanese decedents (~22.6 million) over the past 20 years were analyzed. The proportion of hospital deaths was consistently high (>80%), with a significant decreasing trend from the mid-2000s. Although the proportion of deaths at home decreased in the first half of the study period, they later increased. There was a low proportion of deaths in nursing homes compared to other places of death; however, the proportion increased continually throughout the study period, particularly among women. In 2015, more women died in nursing homes than at home. Although the proportion of hospital deaths declined in the second half of the study period, their overall number continued to increase, reflecting an increase in total deaths in Japan.
Conclusions: This study highlighted rapid changes in trends in PoD in Japan, and the need to consider affordable end-of-life care in Japan as well as other countries with aging populations. The findings from this long-term epidemiological study provide important insights on this issue.
Accumulating evidence suggests that a dementia diagnosis, for many, triggers feelings of grief, and often marks the first of many losses that will be experienced by both the person who has received the diagnosis and their loved ones, as the disease progresses. Previous research has also revealed that carers who report higher levels of pre-death grief are at greater risk of complicated grief after their loved one has died. Despite this evidence, appropriate bereavement support for people bereaved by dementia is a significant unmet need.
The Bereaved by Dementia project was delivered collaboratively by Cruse Cymru and Alzheimer’s Cymru to address the bereavement needs of people bereaved by dementia throughout Wales. This paper draws on an independent evaluation of the Bereaved by Dementia Project conducted by Aston University and the University of Bristol. We summarise our main findings, recommendations, and suggestions for future research.
In the increasingly complex world of modern medicine, relationship-centered, team-based care is important in geriatric cardiology. Palliative cardiovascular care plays a central role in defining the scope and timing of medical therapies and in coordinating symptom-targeted care in line with patient wishes, values, and preferences. Palliative care addresses advance care planning, symptom relief and caregiver/family support and seeks to ameliorate all forms of suffering, including physical, psychological, and spiritual. Although palliative care grew out of the hospice movement and has traditionally been associated with care at the end of life, the current model acknowledges that palliative care can be delivered concurrent with invasive, life-prolonging interventions. As the population ages, patients with serious cardiovascular disease increasingly suffer from noncardiac, multimorbid conditions and become eligible for interventions that palliate symptoms but also prolong life. Management of implanted cardiac support devices at the end of life, whether rhythm management devices or mechanical circulatory support devices, can involve a host of complexities in decisions to deactivate, timing of deactivation and even the mechanics of deactivation. Studies on palliative care interventions have demonstrated clear improvements in quality of life and are more mixed on life prolongation and cost savings. There is and will remain a dearth of clinicians with specialist palliative care training. Therefore, cardiovascular clinicians have a role to play in provision of practical, "primary" palliative care.
BACKGROUND: To provide appropriate cost-effective care for an ageing population, realignment of care provision to conditions common in advanced age, notably, dementia and multi-morbidities is required. The use of outcome measures in practice may enable this.
AIM: A collaborative baseline audit was undertaken to understand how best to implement outcome measures into services for people with dementia across clinical settings.
METHODS: An academic institution set up a 6-month collaborative baseline audit in 11 English sites. Measures comprised: symptoms/concerns (Integrated Palliative care Outcome Scale for Dementia); Phase of Illness; functional status (Australia-modified Karnofsky Performance Scale); and dementia severity (Functional Assessment Staging).
FINDINGS: Measures were completed at first assessment for 225 people with dementia across nine sites. Their completion promoted comprehensive assessments, but challenges also existed, including recording the prevalence/severity of non-physical symptoms by proxy.
CONCLUSIONS: The joining together of clinical academic expertise enabled mobilisation of expert knowledge into and from clinical practice.