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Agitation near the end of life with dementia: An ethnographic study of care.

ABSTRACT: BACKGROUND AND OBJECTIVES:Agitation is common in people living with dementia especially at the end of life. We examined how staff interpreted agitation behavior in people with dementia nearing end of life, how this may influence their responses and its impact on the quality of care. RESEARCH DESIGN:Ethnographic study. Structured and semi-structured non-participant observations (referred to subsequently in this paper as "structured observations") of people living with dementia nearing the end of life in hospital and care homes (south-east England) and in-depth interviews with staff, conducted August 2015-March 2017. METHODS:Three data sources: 1) detailed field notes, 2) observations using a structured tool and checklist for behaviors classed as agitation and staff and institutional responses, 3) staff semi-structured qualitative interviews. We calculated the time participants were agitated and described staff responses. Data sources were analyzed separately, developed continuously and relationally during the study and synthesized where appropriate. RESULTS:We identified two main 'ideal types' of staff explanatory models for agitation: In the first, staff attribute agitated behaviors to the person's "moral judgement", making them prone to rejecting or punitive responses. In the second staff adopt a more "needs-based" approach in which agitation behaviors are regarded as meaningful and managed with proactive and investigative approaches. These different approaches appear to have significant consequences for the timing, frequency and quality of staff response. While these models may overlap they tend to reflect distinct organizational resources and values. CONCLUSIONS:Care worker knowledge about agitation is not enough, and staff need organizational support to care better for people living with dementia towards end of life. Positional theory may help to explain much of the cultural-structural context that produces staff disengagement from people with dementia, offering insights on how agitation behavior is reframed by some staff as dangerous. Such behavior may be associated with low-resource institutions with minimal staff training where the personhood of staff may be neglected.

SUBMITTER: Sampson EL

PROVIDER: S-EPMC6808497 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Agitation near the end of life with dementia: An ethnographic study of care.

Sampson Elizabeth L EL Stringer Aisling A La Frenais Francesca F Higgins Shanlee S Doyle Mary-Jo MJ Laybourne Anne A Livingston Gill G Leavey Gerard G

PloS one 20191023 10

<h4>Background and objectives</h4>Agitation is common in people living with dementia especially at the end of life. We examined how staff interpreted agitation behavior in people with dementia nearing end of life, how this may influence their responses and its impact on the quality of care.<h4>Research design</h4>Ethnographic study. Structured and semi-structured non-participant observations (referred to subsequently in this paper as "structured observations") of people living with dementia near ...[more]

PMID: 31644549

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Project description:Patients with advanced-stage cancer are receiving increasingly aggressive medical care near death, despite growing concerns that this reflects poor-quality care.To assess the association of aggressive end-of-life care with bereaved family members' perceptions of the quality of end-of-life care and patients' goal attainment.Interviews with 1146 family members of Medicare patients with advanced-stage lung or colorectal cancer in the Cancer Care Outcomes Research and Surveillance study (a multiregional, prospective, observational study) who died by the end of 2011 (median, 144.5 days after death; interquartile range, 85.0-551.0 days).Claims-based quality measures of aggressive end-of-life care (ie, intensive care unit [ICU] admission or repeated hospitalizations or emergency department visits during the last month of life; chemotherapy ?2 weeks of death; no hospice or ?3 days of hospice services; and deaths occurring in the hospital).Family member-reported quality rating of "excellent" for end-of-life care. Secondary outcomes included patients' goal attainment (ie, end-of-life care congruent with patients' wishes and location of death occurred in preferred place).Of 1146 patients with cancer (median age, 76.0 years [interquartile range, 65.0-87.0 years]; 55.8% male), bereaved family members reported excellent end-of-life care for 51.3%. Family members reported excellent end-of-life care more often for patients who received hospice care for longer than 3 days (58.8% [352/599]) than those who did not receive hospice care or received 3 or fewer days (43.1% [236/547]) (adjusted difference, 16.5 percentage points [95% CI, 10.7 to 22.4 percentage points]). In contrast, family members of patients admitted to an ICU within 30 days of death reported excellent end-of-life care less often (45.0% [68/151]) than those who were not admitted to an ICU within 30 days of death (52.3% [520/995]) (adjusted difference, -9.4 percentage points [95% CI, -18.2 to -0.6 percentage points]). Similarly, family members of patients who died in the hospital reported excellent end-of-life care less often (42.2% [194/460]) than those who did not die in the hospital (57.4% [394/686]) (adjusted difference, -17.0 percentage points [95% CI, -22.9 to -11.1 percentage points]). Family members of patients who did not receive hospice care or received 3 or fewer days were less likely to report that patients died in their preferred location (40.0% [152/380]) than those who received hospice care for longer than 3 days (72.8% [287/394]) (adjusted difference, -34.4 percentage points [95% CI, -41.7 to -27.0 percentage points]).Among family members of older patients with fee-for service Medicare who died of lung or colorectal cancer, earlier hospice enrollment, avoidance of ICU admissions within 30 days of death, and death occurring outside the hospital were associated with perceptions of better end-of-life care. These findings are supportive of advance care planning consistent with the preferences of patients.

Project description:Background and objectivesThe clinical progression of severe dementia frequently leads to situations where surrogate decision makers must quickly make choices about potentially burdensome treatments that offer limited clinical benefit. We examined whether the number of decision makers and their access to advance directives were related to treatment choice for patients with severe dementia in comparison to those with normal cognition.Research design and methodsWe retrospectively linked survey responses about end-of-life treatment decisions to Medicare claims for Health and Retirement Study respondents dying between 2002 and 2015 whose next-of-kin reported a need for surrogate decision making. We estimated multivariable logistic regression models to study measures of aggressive care in the last 6 months of life; in-hospital death, burdensome transfers, and burdensome treatments.ResultsCompared to patients who were cognitively normal near the end of life (n = 1 198), patients with severe dementia (n = 722) were less likely to experience burdensome treatments (18% [95% confidence interval {CI} 14-21] vs 32% [95% CI 29-35]), burdensome transfers (20% [95% CI 17-24] vs 30% [95% CI 27-33]), and in-hospital death (24% [95% CI 20-28] vs 30% [95% CI 26-33]) when surrogates were involved. Rates of burdensome treatments, transfers, or in-hospital death for decedents with severe dementia did not vary with single versus multiple decision makers or when decision makers were informed by advance directives. However, among decedents with normal cognition, a single decision maker informed by an advance directive was associated with the lowest rates of burdensome treatments and in-hospital death.Discussion and implicationsSurrogate decision makers made similar choices around end-of-life care for patients with severe dementia regardless of the number of decision makers and availability of advance directives. However, both advance directives and single decision makers were associated with less aggressive care for cognitively normal decedents.

Project description:IntroductionPeople living with dementia in care homes can benefit from palliative approaches to care; however, not all will require specialist palliative care. The generalist aged care workforce is well placed to provide most of this care with adequate training and support systems in place, but little is known about their experiences.ObjectiveTo describe staff perspectives on providing quality end-of-life care for people living with dementia in residential care and their families.MethodsFocus groups and semi-structured interviews were conducted with residential aged care managerial and frontline staff in Australia who were caring for residents living with dementia and end-of life needs. A comprehensive, then snowballing sampling strategy was used in participating care homes. Transcripts were analyzed using reflexive thematic analysis.ResultsFifteen semi-structured interviews and six focus groups were undertaken with 56 participants across 14 sites across two Australian states. Five themes were identified: putting the resident at the center (creating homes not hospitals, knowing the individual, a case management approach); articulating goals to grant wishes (initiating the conversation, broadening death literacy, avoiding hospitalization); a collective call to action (staffing the home, recognizing deterioration and escalating issues, communication channels and engaging GPs, managing medications, psychosocial supports); educating to empower staff (governance and guidance, mentoring juniors, self-care); and facilitating family acceptance (setting expectations, partnering in care, access at all hours).DiscussionAged care staff are committed to providing person-centered palliative and end-of-life care for people living with dementia, recognizing the intrinsic value of each resident, regardless of their declining state. Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team, access to targeted palliative and end-of-life education and training, and engaging families as key priorities to providing high quality care in care homes.

Project description:ObjectiveTo analyze whether acute care patients with dementia are more or less likely to receive each of five aggressive medical services near the end of life, compared with patients without dementia.Data sourcesTwo years of Veterans Affairs (VA) and Medicare utilization data for all 169,036 VA users nationwide age 67 and older who died between October 1, 1999 and September 30, 2001.Study designWe performed a retrospective analysis of acute care stays discharged in the final 30 days of life. The main outcome measure was the patient's likelihood of receiving each of five aggressive services (intensive care unit [ICU] admission, ventilator, cardiac catheterization, pulmonary artery monitor, and dialysis), controlling for demographic and clinical factors in probit regressions.Principal findingsThere were 122,740 acute-stay discharges during the final 30 days of life, representing 94,100 unique patients (31,654 with dementia). In probit models comparing acute care patients with and without dementia, patients with dementia were 7.5 percentage points less likely to be admitted to the ICU (95 percent confidence interval [CI], 6.9-8.1; percent of stays with ICU admission=36.8 percent), 5.4 percentage points less likely to be placed on a ventilator (95 percent CI, 5.0-5.9; percent of stays with ventilator use=17.1 percent), 0.7 percentage points less likely to receive cardiac catheterization (95 percent CI, 0.6-0.8; percent of stays with cardiac catheterization=2.7 percent), 1.4 percentage points less likely to receive pulmonary artery monitoring (95 percent CI, 1.2-1.5; percent of stays with pulmonary artery monitoring=2.6 percent), and 0.6 percentage points less likely to receive dialysis (95 percent CI, 0.4-0.8; percent of stays with dialysis=4.6 percent).ConclusionsDuring the final 30 days of life, acute care patients with dementia are treated substantially less aggressively than patients without dementia. Further research is warranted to determine the causes and appropriateness of these patterns of care.

Dataset Information

Agitation near the end of life with dementia: An ethnographic study of care.

Publications

Agitation near the end of life with dementia: An ethnographic study of care.

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