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.
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.
A partir de son expérience et de témoignages, l'auteure explique ce qui fait la particularité de la dépendance psychique des personnes âgées atteintes de la maladie d'Alzheimer ou psychotiques qui vivent dans les Ehpad afin de réfléchir aux moyens de leur assurer le meilleur accompagnement possible.
La loi Claeys-Léonetti modifie de manière importante les dispositions concernant la fin de vie. Elles ont pour objectif de mettre en avant les décisions et les choix des patients en rendant opposables leurs directives anticipées et en leur permettant d’opter pour une sédation profonde et continue maintenue jusqu’à la fin de la vie. Ces modifications mettent en jeu les pratiques des soignants, qu’ils soient médecins ou personnels soignants. Elles ont une répercussion particulière dans les Ehpad, où sont accueillis une grande proportion de sujets en perte d’autonomie et souvent dans l’incapacité d’énoncer leurs volontés. À partir d’un cas clinique, nous mènerons une réflexion sur les enjeux et les difficultés rencontrées afin de traiter cette situation où sont impliqués de nombreux intervenants.
Background: Timely palliative care in frail older persons remains challenging. Scales to identify older patients at risk of functional decline already exist. However, factors to predict short term mortality in older hospitalized patients are scarce.
Methods: In this prospective study, we recruited patients of 75 years and older at the department of cardiology and geriatrics. The usual gait speed measurement closest to discharge was chosen. We used the risk of dying within 1 year as parameter for starting palliative care. ROC curves were used to determine the best cut-off value of usual gait speed to predict one-year mortality. Time to event analyses were assessed by COX regression.
Results: On the acute geriatric ward (n = 60), patients were older and more frail (assessed by Katz and iADL) in comparison to patients on the cardiology ward (n = 82); one-year mortality was respectively 27 and 15% (p = 0.069). AUC on the acute geriatric ward was 0.748 (p = 0.006). The best cut-off value was 0.42 m/s with a sensitivity and specificity of 0.857 and 0.643. Slow walkers died earlier than faster walkers (HR 7.456, p = 0.011), after correction for age and sex. On the cardiology ward, AUC was 0.560 (p = 0.563); no significant association was found between usual gait speed and survival time.
Conclusions: Usual gait speed may be a valuable prognostic factor to identify patients at risk for one-year mortality on the acute geriatric ward but not on the cardiology ward.
Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.
Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.
Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).
Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.
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.
AIMS: To describe advance care planning in nursing homes when residents with cognitive impairment and/or their next of kin participated and identify associated challenges.
DESIGN: A qualitative study of nine advance care planning conversations in four Norwegian nursing home wards. During the implementation of advance care planning, we purposively sampled residents with cognitive impairment, their next of kin and healthcare personnel. The implementation followed a "whole-ward" approach aimed at involving the whole ward in fostering an inclusive, holistic advance care planning discussion. Involving as many residents as possible, preferably together with their next of kin, were central.
METHODS: From observed and audio-recorded advance care planning conversations that took place from November 2015 to June 2016, we conducted a thematic analysis of the transcripts and field notes. Reporting adhered to the COREQ guidelines.
RESULTS: Residents actively relayed their preferences regarding healthcare and end-of-life issues, despite the cognitive impairment. Next of kin provided constructive support and conversations were largely resident-focused. However, involving residents was also challenging, findings included: residents' preferences were often vague, relevant medical information from healthcare personnel lacked and the next of kin were sometimes unaware of the resident's previously held preferences. Moreover, residents tended to focus more on the past and present than the future end-of-life care.
CONCLUSIONS: Residents with cognitive impairment can participate actively and meaningfully in advance care planning, if the healthcare personnel actively listens. However, several challenges can arise. Supported decision-making can improve communication and resident involvement, reinforcing a relational understanding of autonomy.
IMPACT: Persons with cognitive impairment should be invited to participate in advance care planning. Their participation may make its benefits and more person-centred care attainable to persons that are often not involved. Successful involvement of persons with cognitive impairment in advance care planning may rely on robust implementation.
Background: Radiation monotherapy effectively relieves symptoms of esophageal cancer. Many studies have reported relief from dysphagia with this treatment; however, the degree of the dysphagia is subjective.
On the other hand, the length of outpatient management is objective. In this study, we investigated how radiation monotherapy can contribute to helping elderly patients with esophageal cancer remain as outpatients.
Methods: Between January 2010 and December 2017, we followed 42 patients aged >75 years who underwent radiation monotherapy for esophageal carcinoma. Of these patients, 36 were included in
the study. We retrospectively collected data on the patients’ characteristics, tumor extension around the circumference of the esophagus, medical procedures, prognosis, cause of death, and outpatient management
period. We also analyzed the relationships between the outpatient management period, the clinical stage, and the circumferential extension of the tumor.
Results: Of the 36 patients (26 males, 10 females), 27 were treated using doses of 60 or 66 Gy, and 9 received 40 or 50 Gy. The median survival period of the patients who died during the study was 14 months,
and their median period of outpatient management was 9 months. Eight of the 12 patients with tumors extending across four-fifths or the entire circumference of the esophagus required medical intervention to
administer nutrition. There were no significant differences in the period of outpatient management among the patients who died during the study in terms of clinical stage and horizontal location.
Conclusions: Radiation monotherapy may facilitate outpatient management; however, patients with tumors extending all or most of the circumference of the esophagus required an additional medical procedure.
Older adults' preference regarding where they want to spend their end-of-life (EOL) has been reported to be a significant predictor of the actual EOL location. Home-care nurses have often been reported to try involving single older adults' neighbours in the support network of the older adults (community involvement activities) to allow them to stay at home. Hence, nurses' community involvement activities may be among the significant factors of older adults' preference to stay at home during EOL. Therefore, this study explored home-care nurses' community involvement activities and its association with single older adults' EOL preference. A cross-sectional questionnaire survey was conducted with older adults (aged 65 years or older) who lived alone and used home-care nursing services for more than 6 months, their home-care nurses, and managers of their home-care nursing agencies. Questions included participants' characteristics, nurses' community involvement activities and older adults' preference to remain at home during EOL. We conducted multiple logistic regression analyses to explore the relationship between nurses' community involvement activities and older adults' preference to remain at home during EOL while controlling for their demographic variables. In total, 103 pairs of home-care nurses and single older adults from 27 home-care nursing agencies participated. Approximately 70% of older adults preferred to remain at home during EOL, and 50% of nurses implemented community involvement activities. Older adults' preference to remain at home during EOL was associated with implementation of community involvement activities (Odds Ratio [OR]: 3.4; 95% Confidence Interval [95%CI]:1.1-9.8), home-care nurses' higher practical clinical ability (OR: 1.4, 95%CI:1.0-1.8), and older adult's longer use of home-care nursing service (OR: 2.2, 95%CI:1.2-4.1). Community involvement activities may be essential in helping single older adults to stay at home as per their preference for EOL.
BACKGROUND AND OBJECTIVES: Nursing homes (NHs) care for 70% of Americans dying with dementia. Many consider deaths in NHs rather than hospitals as preferable for most of these residents. NH characteristics such as staff teamwork, communication, and other components of patient safety culture (PSC), together with state minimum NH nurse staffing requirements, may influence location of death. We examined associations between these variables and place of death (NH/hospital) among residents with dementia.
RESEARCH DESIGN AND METHODS: Cross-sectional study of 11,957 long-stay NH residents with dementia, age 65+, who died in NHs or hospitals shortly following discharge from one of 800 US NHs in 2017. Multivariable logistic regression systematically estimated effects of PSC on odds of in-hospital death among residents with dementia, controlling for resident, NH, county, and state characteristics. Logistic regressions also determined moderating effects of state minimum NH nurse staffing requirements on relationships between key PSC domains and location of death.
RESULTS: Residents with dementia in NHs with higher PSC scores in communication openness had lower odds of in-hospital death. This effect was stronger in NHs located in states with higher minimum NH nurse staffing requirements.
DISCUSSION AND IMPLICATIONS: Promoting communication openness in NHs across nursing disciplines may help avoid unnecessary hospitalization at the end of life, and merits particular attention as NHs address nursing staff mix while adhering to state staffing requirements. Future research to better understand unintended consequences of staffing requirements is needed to improve end-of-life care in NHs.
Background: Advance Care Planning is recommended for people with end-stage kidney disease but evidence is limited. Robust clinical trials are needed to investigate the impact of advance care planning in this population. There is little available data on cost-effectiveness to guide decision makers in allocating resources for advance care planning. Therefore we sought to determine the feasibility of a randomised controlled trial and to test methods for assessing cost-effectiveness.
Methods: A deferred entry, randomised controlled feasibility trial, incorporating economic and process evaluations, with people with end-stage kidney disease, aged 65 years or older, receiving haemodialysis, in two renal haemodialysis units in Northern Ireland, UK. A nurse facilitator helped the patient make an advance care plan identifying: a surrogate decision-maker; what the participant would like to happen in the future; any advance decision to refuse treatment; preferred place of care at end-of-life.
Results: Recruitment lasted 189 days; intervention and data collection 443 days. Of the 67 patients invited to participate 30 (45%) declined and 36 were randomised to immediate or deferred advance care plan groups. Twenty-two (61%) made an advance care plan and completed data collection at 12 weeks; 17 (47.2%) were able to identify a surrogate willing to be named in the advance care plan document. The intervention was well-received and encouraged end-of-life conversations, but did not succeed in helping patients to fully clarify their values or consider specific treatment choices. There was no significant difference in health system costs between the immediate and deferred groups.
Conclusions: A trial of advance care planning with participants receiving haemodialysis is feasible and acceptable to patients, but challenging. A full trial would require a pool of potential participants five times larger than the number required to complete data collection at 3 months. Widening eligibility criteria to include younger (under 65 years of age) and less frail patients, together with special efforts to engage and retain surrogates may improve recruitment and retention. Traditional advance care planning outcomes may need to be supplemented with those that are defined by patients, helping them to participate with clinicians in making medical decisions.
Trial registration: Registered December 16, 2015. ClinicalTrials.gov Identifier: NCT02631200.
INTRODUCTION: Care homes provide nursing and social care for older people who can no longer live independently at home. In the UK, there is no consistent approach to how information about residents' medical history, care needs and preferences are collected and shared. This limits opportunities to understand the care home population, have a systematic approach to assessment and documentation of care, identifiy care home residents at risk of deterioration and review care. Countries with standardised approaches to residents' assessment, care planning and review (eg, minimum data sets (MDS)) use the data to understand the care home population, guide resource allocation, monitor services delivery and for research. The aim of this realist review is to develop a theory-driven understanding of how care home staff implement and use MDS to plan and deliver care of individual residents.
METHODS AND ANALYSIS: A realist review will be conducted in three research stages.Stage 1 will scope the literature and develop candidate programme theories of what ensures effective uptake and sustained implementation of an MDS.Stage2 will test and refine these theories through further iterative searches of the evidence from the literature to establish how effective uptake of an MDS can be achieved.Stage 3 will consult with relevant stakeholders to test or refine the programme theory (theories) of how an MDS works at the resident level of care for different stakeholders and in what circumstances. Data synthesis will use realist logic to align data from each eligible article with possible context-mechanism-outcome configurations or specific elements that answer the research questions.
ETHICS AND DISSEMINATION: The University of Hertfordshire Ethics Committee has approved this study (HSK/SF/UH/04169). Findings will be disseminated through briefings with stakeholders, conference presentations, a national consultation on the use of an MDS in UK long-term care settings, publications in peer-reviewed journals and in print and social media publications accessible to residents, relatives and care home staff.
PROSPERO REGISTRATION NUMBER: CRD42020171323; this review protocol is registered on the International Prospective Register of Systematic Reviews.
BACKGROUND/OBJECTIVES: Experts have suggested that patients represented by professional guardians receive higher intensity end-of-life treatment than other patients, but there is little corresponding empirical data.
DESIGN: Retrospective cohort study.
SETTING AND PARTICIPANTS: Among veterans aged 65 and older who died from 2011 to 2013, we used Minimum Data Set assessments to identify those who were nursing home residents and had moderately severe or severe dementia. We applied methods developed in prior work to determine which of these veterans had professional guardians. Decedent veterans with professional guardians were matched to decedent veterans without guardians in a 1:4 ratio, according to age, sex, race, dementia severity, and nursing facility type (VA based vs non-VA).
MEASUREMENTS: Our primary outcome was intensive care unit (ICU) admission in the last 30 days of life. Secondary outcomes included mechanical ventilation and cardiopulmonary resuscitation in the last 30 days of life, feeding tube placement in the last 90 days of life, three or more nursing home-to-hospital transfers in the last 90 days of life, and in-hospital death.
RESULTS: ICU admission was more common among patients with professional guardians than matched controls (17.5% vs 13.7%), but the difference was not statistically significant (adjusted odds ratio = 1.33; 95% confidence interval = .89–1.99). There were no significant differences in receipt of any other treatment; nor was there a consistent pattern. Mechanical ventilation and cardiopulmonary resuscitation were more common among patients with professional guardians, and feeding tube placement, three or more end-of-life hospitalizations, and in-hospital death were more common among matched controls.
CONCLUSION: Rates of high-intensity treatment were similar whether or not a nursing home resident with dementia was represented by a professional guardian. This is in part because high-intensity treatment occurred more frequently than expected among patients without guardians.
Continuity of care (COC) has been emphasized in research on terminal cancer patients to increase the quality of end-of-life care; however, limited research has been conducted on end-stage renal disease patients. We applied a retrospective cohort design on 29,095 elderly patients with end-stage renal disease who died between 2005 and 2013. These patients were identified from the National Health Insurance Research Database of Taiwan. The provider Continuity of Care Index (COCI) and site COCI were calculated on the basis of outpatient visits during the 6-12 months before death. We discovered that increases in the provider COCI were significantly associated with reductions in health expenditures after adjusting for confounders, especially in inpatient and emergency departments, where the treatment intensity is high. Higher provider and site COC were also associated with lower utilization of acute care and invasive treatments in the last month before death. Provider COC had a greater effect on end-of-life care expenditures than site COC did, which indicated significant care coordination gaps within the same facility. Our findings support the recommendation of prioritizing the continuity of end-of-life care, especially provider continuity, for patients with end-stage renal disease.
Objectives: Determine feasibility, acceptability, and preliminary effects of the Palliative Care Social Worker-led ALIGN (Assessing & Listening to Individual Goals and Needs) intervention in older persons admitted to Skilled Nursing Facility (SNF) and their caregivers.
Design: A pilot pragmatic randomized stepped wedge design of ALIGN versus usual care in three SNFs.
Setting and Participants: One hundred and twenty older adults and caregivers (optional) with advanced medical illnesses.
Measures: Primary outcomes were feasibility and acceptability. We collected exploratory patient-/caregiver-centered outcomes at baseline and three months and conducted a medical record review at six months to assess documentation of Advance Directives (AD). We also collected exploratory health care utilization data, including hospitalizations, mortality, and hospice utilization.
Results: Of 179 patients approached, 120 enrolled (60 ALIGN patients with 15 caregivers and 60 usual care patients and 21 caregivers). Four intervention patients refused ALIGN visits, 8 patients died or discharged before initial visit, and 48 intervention patients received ALIGN visits, with [about] 80% having caregivers participating in visits, regardless of caregiver study enrollment. Quantitative exploratory outcomes were not powered to detect a difference between groups. We found 91% of ALIGN patients had a completed AD in medical record compared to 39.6% of usual care patients (p < 0.001). Qualitative feedback from participants and SNF staff supported high acceptability and satisfaction with ALIGN.
Conclusion and Clinical Implications: A pragmatic trial of the ALIGN intervention is feasible and preliminary effects suggest ALIGN is effective in increasing AD documentation. Further research is warranted to understand effects on caregivers and health care utilization. The current model for SNF does not address the palliative care needs of patients. ALIGN has potential to be an effective, scalable, acceptable, and reproducible intervention to improve certain palliative care outcomes within subacute settings.
Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.
Methods: Mortality follow-back postal survey.
Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).
Participants: Informal carers (ICrs) of decedents who had received palliative care.
Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).
Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief.
Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden.
Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.
OBJECTIVES: To describe changes in the occurrence of restricting symptoms at the end of life from 1998 to 2019 and compare these changes according to the condition leading to death.
DESIGN: Prospective longitudinal study.
SETTING: Greater New Haven, CT.
PARTICIPANTS: A total of 665 decedents from a cohort of 754 community-living persons, 70 years or older.
MEASUREMENTS: The occurrence of 16 restricting symptoms was ascertained during monthly interviews. Information on the conditions leading to death was obtained from death certificates and comprehensive assessments that were completed every 18-months. For each restricting symptom, adjusted rates (per 100 person-months) were calculated separately for six multiyear time intervals.
RESULTS: From 1998 to 2019, rates decreased for five (31.3%) restricting symptoms (difficulty sleeping; chest pain or tightness; shortness of breath; cold or flu symptoms; and nausea, vomiting, or diarrhea), increased for three (18.8%: arm or leg weakness; urinary incontinence; and memory or thinking problem), and changed little for the other eight (50.0%: poor eyesight; anxiety; depression; musculoskeletal pain; fatigue; dizziness or unsteadiness; frequent or painful urination; and swelling in feet or ankles). The decrease in rates was most pronounced for shortness of breath, with a reduction from 15.0 (95% credible interval = 11.7-18.6) in 1998 to 2001 to 8.2 (95% credible interval = 5.9-10.5) in 2014 to 2019, yielding a rate ratio (95% credible interval) of 0.92 (0.86-0.98). When evaluated according to the condition leading to death, the results were similar, with 10 of the 13 statistically significant rate ratios representing decreases in rates over time and only 3 representing increases.
CONCLUSION: The occurrence of most restricting symptoms at the end of life has been decreasing or stable over the past two decades. These results suggest that end-of-life care has been improving, although additional efforts will be needed to further reduce symptom burden at the end of life.
BACKGROUND: Place of death is important to patients and caregivers, and often a surrogate measure of health care disparities. While recent trends in place of death suggest an increased frequency of dying at home, data is largely unknown for older adults with cancer.
METHODS: Deidentified death certificate data were obtained via the National Center for Health Statistics. All lung, colon, prostate, breast, and pancreas cancer deaths for older adults (defined as >65 years of age) from 2003 to 2017 were included. Multinomial logistic regression was used to test for differences in place of death associated with sociodemographic variables.
RESULTS: From 2003 through 2017, a total of 3,182,707 older adults died from lung, colon, breast, prostate and pancreas cancer. During this time, hospital and nursing home deaths decreased, and the rate of home and hospice facility deaths increased (all p < 0.001). In multivariable regression, all assessed variables were found to be associated with place of death. Overall, older age was associated with increased risk of nursing facility death versus home death. Black patients were more likely to experience hospital death (OR 1.7) and Hispanic ethnicity had lower odds of death in a nursing facility (OR 0.55). Since 2003, deaths in hospice facilities rapidly increased by 15%.
CONCLUSION: Hospital and nursing facility cancer deaths among older adults with cancer decreased since 2003, while deaths at home and hospice facilities increased. Differences in place of death were noted for non-white patients and older adults of advanced age.