In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age =50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50-64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research.
Aging adults (65+) with disability are especially vulnerable to coronavirus disease 2019 (COVID-19), and on contracting, they are a cohort most likely to require palliative care. Therefore, it is very important that health services-particularly health services providing palliative care-are proximately available. Treating the Melbourne metropolitan area as a case study, a spatial analysis was conducted to clarify priority areas with a significantly high percentage and number of aging adults (65+) with disability and high barriers to accessing primary health services. Afterward, travel times from priority areas to palliative medicine and hospital services were calculated. The geographic dispersion of areas with people vulnerable to COVID-19 with poor access to palliative care and health services is clarified. Unique methods of health service delivery are required to ensure that vulnerable populations in underserviced metropolitan areas receive prompt and adequate care. The spatial methodology used can be implemented in different contexts to support evidence-based COVID-19 and pandemic palliative care service decisions.
Background: Although advance care planning discussions are increasingly accepted worldwide, their ideal timing is uncertain and cultural factors may pertain.
Aim: To evaluate timing and factors affecting initiation of advance care planning discussions for adult patients in Japan and Taiwan.
Design: Mixed-methods questionnaire survey to quantitatively determine percentages of patients willing to initiate advance care planning discussions at four stages of illness trajectory ranging from healthy to undeniably ill, and to identify qualitative perceptions underlying preferred timing.
Setting/participants: Patients aged 40–75 years visiting outpatient departments at four Japanese and two Taiwanese hospitals were randomly recruited.
Results: Overall (of 700 respondents), 72% (of 365) in Japan and 84% (of 335) in Taiwan (p < 0.001) accepted discussion before illness. In Japan, factors associated with willingness before illness were younger age and rejection of life-sustaining treatments; in Taiwan, older age, stronger social support, and rejection of life-sustaining treatments. Four main categories of attitudes were extracted: the most common welcomed discussion as a wise precaution, responses in this first category outnumbered preference for postponement of discussion until imminent end of life, acceptance of the universal inevitability of death, and preference for discussion at healthcare providers’ initiative.
Conclusion: The majority of patients are willing to begin discussion before their health is severely compromised; about one out of five patients are unwilling to begin until clearly facing death. To promote advance care planning, healthcare providers must be mindful of patients’ preferences and factors associated with acceptance and reluctance to initiate advance care planning.
With services overburdened, healthcare professionals are having to decide who should receive treatment. Dave Archard says this is no excuse for wandering blindly into discrimination, but Arthur Caplan argues age is a valid criterion when supported by data.
Introduction: Poorer end-of-life (EOL) care for elderly cancer patients has been reported. We assessed the impact of age on 13 indicators for the quality of EOL care as well as adherence to 6 national quality indicators in gynaecological cancer patients.
Methods: Age-dependent differences in 13 palliative care quality indicators were studied in gynaecological cancer patients registered in the population-based Swedish Register of Palliative Care. Association between the patient’s age and each quality indicator was analyzed by logistic regression, adjusted for place of death where appropriate. Adherence to six national quality indicators determined by the Swedish National Board of Health and Welfare was estimated in all patients.
Results: We included 3940 patients with the following age distribution: 1.6% were 18–39 years of age, 12.3% 40–59 years, 37.2% 60–74 years, 28.9% 75–84 years and 20% were =85 years. Age-dependent differences in implementation rate were present for some of the 13 quality indicators. Compared to elderly cancer patients, younger patients were more likely to be cared for by a specialized palliative care service, more often informed about imminent death as well as assessed for pain. For most national quality indicators, the goal level was not met. Only for the ‘on demand prescription for pain’, the goal level was reached.
Conclusions: EOL care did not meet national quality indicators in this population-based data from Sweden, in particular in the elderly population. Elderly gynaecological cancer patients are at high risk of poorer EOL care without the involvement of specialized palliative care services. Palliative care services need to be implemented across all institutions of EOL care to ensure good and equal care.
Interprofessional shadowing, whereby medical students take on the role of another profession, is an effective interprofessional education (IPE) method to promote interprofessional teamwork. Palliative care is an ideal setting for IPE as multidisciplinary teams work together to deliver holistic patient care. This brief report explores junior doctors' experiences in shadowing nurses to provide care to patients in a hospice setting in New Zealand. We conducted semi-structured interviews with six participants to find out the impact that this shadowing experience had on their professional development and feasibility of incorporating this activity into the undergraduate medical curriculum. Inductive thematic analysis revealed that shadowing a nurse for two days increased participants' awareness of the nursing role and gave them the opportunity to develop a personal relationship with their patients, both of which made participants actively reflect on the value of IPE and the way they practice medicine. Participants considered the palliative care setting as conducive to IPE and saw the value of incorporating interprofessional shadowing into the undergraduate medical curriculum.
CONTEXT: The aging of the world's population increasingly calls on older people to care for their cancer relatives. This scenario confronts clinicians involved with end-of-life care with an imposing challenge: elderly family caregivers could have a different perception of the burdens associated with assistance compared to their younger counterparts. Palliativists need to know what limits and resources of these new age categories of caregivers could be for a global management of dying patients with cancer and their family.
OBJECTIVES: To evaluate the caregiver burden in family caregivers supporting dying patients with cancer in order to compare the differences between 2 different caregivers age groups (younger vs elderly population).
METHODS: This is a cross-sectional study. A total of 174 family caregivers of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into 2 subgroups aged <65 (younger group) and =65 years old (elderly group).
RESULTS: Compared with younger caregivers, the elderly group reported significantly higher scores in the CBI-developmental subscale (P = .009) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. No further differences were found between the 2 age groups in the other CBI scores (time-dependent, physical, social, emotional, and overall score).
CONCLUSION: Elderly caregivers are at high risk for experiencing developmental burden. This finding could prompt mental health professionals to pay greater attention to the value that assistance to the family member can have on their personal story and on that of the family or couple.
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.
OBJECTIVE: The EORTC QOL Group has recently completed the cross-cultural development and validation of a standalone measure of spiritual well-being (SWB) for cancer patients receiving palliative care: the EORTC QLQ-SWB32. The measure includes four scales: Relationships with Others, Relationship with Self, Relationship with Someone or Something Greater, and Existential, plus a Global-SWB item. This paper reports on further research investigating relationships between sex, age and SWB for patients receiving palliative care for cancer-adjusting for other socio-demographic, clinical and function variables, including WHO performance status and EORTC QLQ-C15-PAL emotional and physical function scores.
METHODS: Cross-sectional data from the validation study were used, and chi-square, independent t tests, Mann-Whitney U tests and multiple regression analyses applied.
RESULTS: The study included 451 participants with advanced and incurable cancer, from 14 countries. Adjusted analyses found better scores for female participants than males on three of the four EORTC QLQ-SWB32 subscales; Relationship with others, Relationship with Someone or Something Greater and Existential plus Global-SWB. Older age was positively associated with better Relationship with Self.
CONCLUSION: The findings from our participants suggest that it might be beneficial if healthcare providers seeking to address patients' spiritual needs pay particular attention to male patients, younger patients and those with poor emotional functioning.
Le vieillissement de la population constitue un enjeu de plus en plus présent dans la société et les médias québécois. Souvent présenté sous un jour alarmiste, il est dépeint de façon peu nuancée en occultant la multitude de ses réalités. Pourtant, vieillir ne signifie pas faire rupture avec son passé pour entrer dans une catégorie à part de la population. au contraire, Le vieillissement s’inscrit le plus souvent dans la continuité d’une existence marquée par son individualité et par son appartenance à différents groupes. Les recherches récentes en gérontologie sociale nous mettent en garde contre la propension à réduire l’identité des aînés à la seule dimension de l’âge.
[Début de l'article]
Les aîné-es trans sont une population en devenir constituée d’individus aux identités, réalités et trajectoires très diversifiées. Cet article basé sur une recension des écrits, présente tout d’abord cette diversité, notamment en ce qui a trait à l’âge, tant à l’appartenance générationnelle qu’à l’âge du début de la transition. On y traite ensuite de la santé physique des aîné-es trans, soit des problèmes et des besoins de santé qui leur sont propres, puis des barrières auxquelles ils et elles se heurtent dans leurs démarches pour avoir accès à des soins et des services de santé adéquats. Le texte relève certaines difficultés comme l’isolement et le manque de soutien qui sont souvent le lot des aînés trans ainsi que les obstacles dans leur accès aux services sociaux et aux soins liés au vieillissement. L’article propose des pistes d’action pour les personnes professionnelles dans le domaine de la santé et des services sociaux et se conclut sur des pistes de recherche.
As the median age of practicing physicians increases, ethical dilemmas due to age-related cognitive decline among clinicians will become ever more pressing. Compelling data show that despite acknowledgement of their duty to protect the public, physicians often fail to report themselves, their colleagues, or their physician-patients when cognitive decline appears to impact medical practice adversely. As such, efforts to educate physicians about ethical obligations and various tactful methodologies to report themselves or others seem ineffective. Illustrated by a case report of age-related cognitive decline in a practicing physician, practical recommendations are made both to develop and validate cognitive screening in middle-aged physicians, presumably before the onset of age-related cognitive decline.
BACKGROUND: There is a heterogeneous literature on healthcare utilization patterns at the end of life. The objective of this study is to examine the impact of closeness to death on the utilization of acute hospital-based healthcare services and some primary healthcare services and compare differences in gender, age groups and major causes of death disease specific mortality.
METHODS: A matched case-control study, nested in a cohort of 411,812 subjects, linked to administrative databases was conducted. All subjects were residents in the Friuli Venezia Giulia Region (Italy), born before 1946, alive in January 2000 and were followed up to December 2014. Overall, 158,571 decedents/cases were matched by gender and year of birth to one control, alive at least one year after their matched case's death (index-date). Hospital admissions, emergency department visits, drug prescriptions, specialist visits and laboratory tests that occurred 365 days before death/index-date, have been evaluated. Odds Ratios (ORs) for healthcare utilization were estimated through conditional regression models, further adjusted for Charlson Comorbidity Index and stratified by gender, age groups and major causes of death.
RESULTS: Decedents were significantly more likely of having at least one hospital admission (OR 7.0, 6.9-7.1), emergency department visit (OR 5.2, 5.1-5.3), drug prescription (OR 2.8, 2.7-2.9), specialist visit (OR 1.4, 1.4-1.4) and laboratory test (OR 2.7, 2.6-2.7) than their matched surviving counterparts. The ORs were generally lower in the oldest age group (95+) than in the youngest (55-74). Healthcare utilization did not vary by sex, but was higher in subjects who died of cancer.
CONCLUSION: Closeness to death appeared to be strongly associated with healthcare utilization in adult/elderly subjects. The risk seems to be greater among younger age groups than older ones, especially for acute based services. Reducing acute healthcare at the EOL represents an important issue to improve the quality of life in proximity to death.
Palliative care research has largely focused on patients with disease specific conditions such as advanced cancer, cardiac or pulmonary diseases. As patients age, however, they often develop chronic conditions that may lead to decreases in health-related quality of life or symptoms such as pain and dyspnea. As the population ages, the prevalence of patients with multi-morbidity also increases but these patients may not be identified as having palliative care needs.
En 2017, 606 000 personnes sont décédées en France. La moitié avait plus de 83 ans et un quart plus de 90 ans. L'âge moyen au décès ne cesse d'augmenter depuis cinquante ans. Il est passé de 72 ans pour les femmes décédées en 1967 à 83 ans pour celles décédées en 2017, et de 64 à 76 ans pour les hommes sur la même période. Depuis 1967, le nombre de décès de nouveau-nés a été divisé par six.
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Despite education and professional preparation, age and diagnosis discrimination persists in health care. A case scenario describes discrimination that could have resulted in untimely death without advocacy and intervention by 1 informed professional. Nurses must identify their own attitudes and behaviors associated with age, diagnosis, and their role within the interprofessional team to identify when discrimination may be occurring and claim their responsibility as advocate to ethically intervene on behalf of patients and families when appropriate.
OBJECTIVES: To explore how psychology trainee death concerns and ageist behavior relate to their willingness and desire to work with older adults.
METHOD: Trainees (N = 104; 80.8% women) completed the Death Thought-Accessibility Measure, Relating to Older People Evaluation (ROPE), Death Anxiety Scale-Extended (DASE), and Beck Anxiety Inventory (BAI) and rated their willingness and desire to work with older adults and their willingness to obtain training on how to work with older adults.
RESULTS: Pearson correlations showed that salience of death-related thoughts, death anxiety (but not general anxiety), and negative behaviors toward older adults were significantly negatively associated with trainees' willingness and desire to work with older adults. Regressions revealed that negative behaviors toward older adults was the strongest factor associated with willingness and desire to work with older adults, whereas positive behaviors toward older adults was the strongest factor associated with being willing to obtain training in working with older adults. Death anxiety and salience of death-related thoughts positively correlated with each other and were each positively associated with negative behaviors toward older adults.
CONCLUSION: Helping graduate trainees become more comfortable with mortality and changing negative behaviors toward older adults may increase their interest in gerontology and geriatrics.
Long-term care (LTC) planning is important in helping the older people tackle their future needs better. The needs for LTC services represent generational characteristics as they may be different between the current and upcoming cohorts of older adults. However, very few studies have examined the cohort differences in terms of their expected utilisation of LTC services, while understanding the patterns is crucial in helping policy makers prepare for the development of LTC services. This study fills the research gap by examining the plans and expectations for LTC services of 1,613 middle-aged and older persons in Hong Kong with data collected from a telephone survey. By applying the Andersen Model to examine LTC expectations, this study analyses the LTC needs and plans of the middle-aged and older cohorts of Hong Kong adults, as well as their associated factors, with a multiple logistic regression method. Both gender and birth cohort were examined individually and in combination. Birth cohort and gender have been found to exert an impact on all aspects of LTC needs and planning to varying degrees. The findings are interpreted and contrasted with those of a key study based in the West, with reference to the contextual characteristics of Hong Kong. This study furthers the scholarly understanding on LTC needs and planning and their cohort effect, and draws evidence-based recommendations for LTC development in Hong Kong, a rapidly ageing East Asian society.
OBJECTIVES: Although a national consensus exists on the need to increase the rates of advance care planning (ACP) for all adults, racial/ethnic differences in ACP have been consistently observed. This study investigated the intersection of racial/ethnic differences and the number of chronic health conditions on ACP among middle-aged and older adults in the United States.
METHOD: Responses from 8,926 adults from the 2014 wave of the Health and Retirement Study were entered into multilevel hierarchical logistic regression analyses with generalized linear mixed models to predict ACP focused on assigning a durable power of attorney for healthcare (DPOAHC) and having a written living will after adjusting for covariates.
RESULTS: We found a significant positive relationship between the number of chronic health conditions and ACP. Non-Hispanic Blacks/African Americans and Hispanics were less likely to engage in ACP than non-Hispanic Whites/Caucasians. Racial/ethnic disparities were even starker for completing a living will. The number of chronic health conditions had a greater effect for Hispanics than non-Hispanic Whites/Caucasians on ACP through assigning a DPOAHC and having a living will. The initial disparity in ACP among Hispanics with no chronic health conditions decreased as the number of chronic health conditions increased.
CONCLUSION: Our findings suggest that more chronic health conditions increase the likelihood that Hispanics will complete ACP documents. These ACP differences should be highlighted to researchers, policymakers, and healthcare professionals to reduce stark racial/ethnic disparities in ACP. A comprehensive and culturally caring decision-making approach should be considered when individuals and families engage in ACP.