Can an effective end-of-life intervention for advanced dementia be viewed as moral?
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ABSTRACT:
SUBMITTER: Terman SA
PROVIDER: S-EPMC10941521 | biostudies-literature | 2024 Jan-Mar
REPOSITORIES: biostudies-literature
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Can an effective end-of-life intervention for advanced dementia be viewed as moral?
Alzheimer's & dementia (Amsterdam, Netherlands) 20240101 1
Many people dread prolonged dying with suffering in the terminal illness, advanced dementia. To successfully facilitate a timely dying, advance directives must be effective and acceptable. This article considers whether authorities, including treating physicians, can accept as moral, the effective intervention that ceases caregivers' assistance with oral feeding and hydrating. The article presents eight criticisms and "alternate views" regarding ceasing assisted feeding/hydrating. It draws on pe ...[more]
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Project description:We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia.
| S-EPMC10941533 | biostudies-literature
Project description:BackgroundMany people with dementia die in nursing homes, but quality of care may be suboptimal. We developed the theory-driven 'Compassion Intervention' to enhance end-of-life care in advanced dementia.ObjectivesTo (1) understand how the Intervention operated in nursing homes in different health economies; (2) collect preliminary outcome data and costs of an interdisciplinary care leader (ICL) to facilitate the Intervention; (3) check the Intervention caused no harm.DesignA naturalistic feasibility study of Intervention implementation for 6 months.SettingsTwo nursing homes in northern London, UK.ParticipantsThirty residents with advanced dementia were assessed of whom nine were recruited for data collection; four of these residents' family members were interviewed. Twenty-eight nursing home and external healthcare professionals participated in interviews at 7 (n=19), 11 (n=19) and 15 months (n=10).InterventionAn ICL led two core Intervention components: (1) integrated, interdisciplinary assessment and care; (2) education and support for paid and family carers.Data collectedProcess and outcome data were collected. Symptoms were recorded monthly for recruited residents. Semistructured interviews were conducted at 7, 11 and 15 months with nursing home staff and external healthcare professionals and at 7 months with family carers. ICL hours were costed using Department of Health and Health Education England tariffs.ResultsContextual differences were identified between sites: nursing home 2 had lower involvement with external healthcare services. Core components were implemented at both sites but multidisciplinary meetings were only established in nursing home 1. The Intervention prompted improvements in advance care planning, pain management and person-centred care; we observed no harm. Six-month ICL costs were £18 255.ConclusionsImplementation was feasible to differing degrees across sites, dependent on context. Our data inform future testing to identify the Intervention's effectiveness in improving end-of-life care in advanced dementia.Trial registrationClinicalTrials.gov:NCT02840318: Results.
| S-EPMC5541605 | biostudies-literature
Project description:BackgroundOf the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life.MethodsThe study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with 13 nurses from 12 nursing homes in Sweden. The results were analysed using thematic content analysis.ResultsThe nurses described communicative, relational and organisational challenges. One major issue involved difficulties communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons' relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia.ConclusionsThis study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.
| S-EPMC7981921 | biostudies-literature
Project description:BackgroundLewy body dementia (LBD) is the second most common neurodegenerative dementia in the US, presenting unique end-of-life challenges.ObjectiveThis study examined healthcare utilization and care continuity in the last year of life in LBD.MethodsMedicare claims for enrollees with LBD, continuously enrolled in the year preceding death, were examined from 2011-2018. We assessed hospital stays, emergency department (ED) visits, intensive care unit (ICU) admissions, life-extending procedures, medications, and care continuity.ResultsWe identified 45,762 LBD decedents, predominantly female (51.8%), White (85.9%), with average age of 84.1 years (SD 7.5). There was a median of 2 ED visits (IQR 1-5) and 1 inpatient stay (IQR 0-2). Higher age was inversely associated with ICU stays (Odds Ratio [OR] 0.96; 95% Confidence Interval [CI] 0.96-0.97) and life-extending procedures (OR 0.96; 95% CI 0.95-0.96). Black and Hispanic patients experienced higher rates of ED visits, inpatient hospitalizations, ICU admissions, life-extending procedures, and in-hospital deaths relative to White patients. On average, 15 (7.5) medications were prescribed in the last year. Enhanced care continuity correlated with reduced hospital (OR 0.72; 95% CI 0.70-0.74) and ED visits (OR 0.71; 95% CI 0.69-0.87) and fewer life-extending procedures (OR 0.71; 95% CI 0.64-0.79).ConclusionsThis study underscored the complex healthcare needs of people with LBD during their final year, which was influenced by age and race. Care continuity may reduce hospital and ED visits and life-extending procedures.
| S-EPMC11371273 | biostudies-literature
Project description:BackgroundDementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia.AimTo identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia.DesignSystematic review and narrative synthesis.Data sourcesElectronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia.ResultsThirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life.ConclusionEnd-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.
| S-EPMC8637358 | biostudies-literature
Project description:IntroductionOlder adults with Alzheimer's disease and related dementias (ADRD) often face burdensome end-of-life care transfers. Advanced practice clinicians (APCs)-which include nurse practitioners and physician assistants-increasingly provide primary care to this population. To fill current gaps in the literature, we measured the association between APC involvement in end-of-life care versus hospice utilization and hospitalization for older adults with ADRD.MethodsUsing Medicare data, we identified nursing home- (N=517,490) and community-dwelling (N=322,461) beneficiaries with ADRD who died between 2016 and 2018. We employed propensity score-weighted regression methods to examine the association between different levels of APC care during their final 9 months of life versus hospice utilization and hospitalization during their final month.ResultsFor both nursing home- and community-dwelling beneficiaries, higher APC care involvement associated with lower hospitalization rates and higher hospice rates.DiscussionAPCs are an important group of providers delivering end-of-life primary care to individuals with ADRD.HighlightsFor both nursing home- and community-dwelling Medicare beneficiaries with ADRD, adjusted hospitalization rates were lower and hospice rates were higher for individuals with higher proportions of APC care involvement during their final 9 months of life. Associations between APC care involvement and both adjusted hospitalization rates and adjusted hospice rates persisted when accounting for primary care visit volume.
| S-EPMC10523969 | biostudies-literature
Project description:ObjectiveKorea's transition into a super-aged society brings to the forefront the escalating dementia prevalence and the consequent rise in mortality, highlighting the need for effective end-of-life (EOL) care strategies. Despite legislative advancements, gaps remain in addressing the medical and ethical challenges of EOL care for patients with advanced dementia, particularly in evaluating treatment options like nasogastric tube (NGT) use and mechanical ventilation (MV). This study investigates the attitudes of the general population (GP) and clinicians in Korea towards EOL treatment decisions.MethodsA cross-sectional, web-based survey was conducted among 500 members of the GP and 200 clinicians from a university hospital. Case vignettes were used to assess attitudes towards EOL treatment decisions, specifically focusing on NGT and MV use, and to explore the influencing factors.ResultsThere was a notable difference in favorable attitudes toward NGT withdrawal between the GP (62.2%) and clinicians (39.0%). Otherwise, both groups showed higher acceptance of MV withholding (82.2% [GPs] and 82.5% [clinicians]) when informed of the patient's verbal intention regarding life-sustaining treatment (LST), and attitudes were more positive with written advance directives. Also, it was decreased when patient intentions were unclear.ConclusionThe results suggested the need to consider NGT as a medical intervention requiring a risk-benefit analysis. Although LST decision-making in patients with advanced dementia is still limited in Korea, this study showed the shared recognition among the GP and clinicians of the importance of EOL treatment decisions that consider patient wishes and quality of life for patients with advanced dementia.
| S-EPMC11513861 | biostudies-literature
Project description:ImportanceNursing home residents with advanced dementia have limited life expectancies yet are commonly subjected to burdensome interventions at the very end of life. Whether sex-specific differences in the receipt of these interventions exist and what levels of physical restraints and antibiotics are used in this terminal setting are unknown.ObjectiveTo evaluate the population-based frequency, factors, and sex differences in burdensome interventions and antibiotic therapy among nursing home residents with advanced dementia.Design, setting, and participantsThis population-based cohort study from Ontario, Canada, used linked administrative databases held at ICES, including the Continuing Care Resident Reporting System Long-Term Care database, which contains data from the Resident Assessment Instrument Minimum Data Set, version 2.0. Nursing home residents (n = 27 243) with advanced dementia who died between June 1, 2010, and March 31, 2015, at 66 years or older were included in the analysis. Initial statistical analysis was completed in May 2017, and analytical revisions were conducted from November 2018 to January 2019.ExposureSex of the nursing home resident.Main outcomes and measuresBurdensome interventions (transitions of care, invasive procedures, and physical restraints) and antibiotic therapy in the last 30 days of life.ResultsThe final cohort included 27 243 nursing home residents with advanced dementia (19 363 [71.1%] women) who died between June 1, 2010, and March 31, 2015, at the median (interquartile range) age of 88 (83-92) years. In the last 30 days of life, burdensome interventions were common, especially among men: 5940 (21.8%) residents were hospitalized (3661 women [18.9%] vs 2279 men [28.9%]; P < .001), 2433 (8.9%) had an emergency department visit (1579 women [8.2%] vs 854 men [10.8%]; P < .001), and 3701 (13.6%) died in an acute care facility (2276 women [11.8%] vs 1425 men [18.1%]; P < .001). Invasive procedures were also common; 2673 residents (9.8%) were attended for life-threatening critical care (1672 women [8.6%] vs 1001 men [12.7%]; P < .001), and 210 (0.8%) received mechanical ventilation (113 women [0.6%] vs 97 men [1.2%]; P < .001). Among the 9844 residents (36.1%) who had a Resident Assessment Instrument Minimum Data Set, version 2.0, completed in the last 30 days of life, 2842 (28.9%) were physically restrained (2002 women [28.3%] vs 840 men [30.4%]; P = .005). More than one-third (9873 [36.2%]) of all residents received an antibiotic (6599 women [34.1%] vs 3264 men [41.4%]; P < .001). In multivariable models, men were more likely to have a transition of care (adjusted odds ratio, 1.41; 95% CI, 1.33-1.49; P < .001) and receive antibiotics (adjusted odds ratio, 1.33; 95% CI, 1.26-1.41; P < .001). Only 3309 residents (12.1%; 2382 women [12.3%] vs 927 men [11.8%]) saw a palliative care physician in the year before death, but those who did experienced greater than 50% lower odds of an end-of-life transition of care (adjusted odds ratio, 0.48; 95% CI, 0.43-0.54); P < .001) and greater than 25% lower odds of receiving antibiotics (adjusted odds ratio, 0.74; 95% CI, 0.68-0.81; P < .001).Conclusions and relevanceIn this study, many nursing home residents with advanced dementia, especially men, received burdensome interventions and antibiotics in their final days of life. These findings appear to emphasize the need for sex-specific analysis in dementia research as well as the expansion of palliative care and end-of-life antimicrobial stewardship in nursing homes.
| S-EPMC6704739 | biostudies-literature
Project description:BackgroundDementia is a leading cause of death for older adults and is more common among persons from racial/ethnic minoritized groups, who also tend to experience more intensive end-of-life care. This retrospective cohort study compared end-of-life care in persons with and without dementia and identified dementia's moderating effects on the relationship between race/ethnicity and end-of-life care.MethodsAdministrative claims data for 463,590 Medicare fee-for-service decedents from 2016 to 2018 were analyzed. Multivariable logistic and linear regression analyses examined the association of dementia with 5 intensive and 2 quality of life-focused measures. Intensity measures included hospital admission, ICU admission, receipt of any of 5 intensive procedures (CPR, mechanical ventilation, intubation, dialysis initiation, and feeding tube insertion), hospital death, and Medicare expenditures (last 30 days of life). Quality of life measures included timely hospice care (>3 days before death) and days at home (last 6 months of life). Models were adjusted for demographic and clinical factors.Results54% of Medicare decedents were female, 85% non-Hispanic White, 8% non-Hispanic Black, and 4% Hispanic. Overall, 51% had a dementia diagnosis claim. In adjusted models, decedents with dementia had 16%-29% lower odds of receiving intensive services (AOR hospital death: 0.71, 95% CI: 0.70-0.72; AOR hospital admission: 0.84, 95% CI: 0.83-0.86). Patients with dementia had 45% higher odds of receiving timely hospice (AOR: 1.45, 95% CI: 1.42-1.47), but spent 0.74 fewer days at home (adjusted mean: -0.74, 95% CI: (-0.98)-(-0.49)). Compared to non-Hispanic White individuals, persons from racial/ethnic minoritized groups were more likely to receive intensive services. This effect was more pronounced among persons with dementia.ConclusionsAlthough overall dementia was associated with fewer intensive services near death, beneficiaries from racial/ethnic groups minoritized with dementia experienced more intensive service use. Particular attention is needed to ensure care aligns with the needs and preferences of persons with dementia and from racial/ethnic minoritized groups.
| S-EPMC9588556 | biostudies-literature
Project description:Background and aimEnd-of-Life (EOL) decision-making in paediatric critical care can be complex and heterogeneous, reflecting national culture and law as well as the relative resources provided for healthcare. This study aimed to identify similarities and differences in the experiences and attitudes of European paediatric intensive care doctors, nurses and allied health professionals about end-of-life decision-making and care.MethodsThis was a cross-sectional observational study in which we distributed an electronic survey to the European Society of Paediatric and Neonatal Intensive Care (ESPNIC) members by email and social media. The survey had three sections: (i) 16 items about attitudes to EOL care, (ii) 14 items about EOL decisions, and (iii) 18 items about EOL care in practice. We used a 5-point Likert scale and performed descriptive statistical analysis.ResultsOverall, 198 questionnaires were completed by physicians (62%), nurses (34%) and allied health professionals (4%). Nurses reported less active involvement in decision-making processes than doctors (64% vs. 95%; p < 0.001). As viewed by the child and family, the child's expected future quality of life was recognised as one of the most critical considerations in EOL decision-making. Sub-analysis of Northern, Central and Southern European regions revealed differences in the optimal timing of EOL decisions. Most respondents (n = 179; 90%) supported discussing organ donation with parents during EOL planning. In the sub-region analysis, differences were observed in the provision of deep sedation and nutritional support during EOL care.ConclusionsThis study has shown similar attitudes and experiences of EOL care among paediatric critical care professionals within European regions, but differences persist between European regions. Nurses are less involved in EOL decision-making than physicians. Further research should identify the key cultural, religious, legal and resource differences underlying these discrepancies. We recommend multi-professional ethics education to improve EOL care in European Paediatric Intensive Care.
| S-EPMC9872024 | biostudies-literature