1. To describe the prevalence of lifetime trauma among persons in the last years of life and different patterns across gender.
2. To understand the association of lifetime trauma with physical ...symptoms, mental health, and social needs, and clinical implications for trauma-informed palliative care.
Older adults in the last years of life report a high prevalence of lifetime trauma, with different patterns by gender. Collective trauma was associated with worsened end-of-life physical symptoms and psychosocial well-being. Clinicians should adopt a trauma-informed approach to the care of seriously ill adults and consider the impact of past trauma when addressing end-of-life symptoms and psychosocial needs.
A better understanding of lifetime experiences of trauma among persons approaching the end of life could guide approaches to trauma-informed palliative care.
To determine 1) the prevalence of trauma among persons at the end of life, and 2) the association of lifetime trauma with end-of-life physical, mental, and social well-being.
We used nationally-representative Health and Retirement Study data, including adults age >50 who died while enrolled (N=4,338). Trauma was measured using a published 11-item traumatic events scale (categorized as 0-5+ events). End-of-life outcomes included validated measures of physical (pain, dyspnea, fatigue), mental (depression, life satisfaction), and social (loneliness, social isolation) needs. We report the overall prevalence of trauma and by gender, then the adjusted probability of each end-of-life outcome by trauma derived from multivariate logistic regression.
The mean age at death was 77 years (SD=11.1), 51% were female, and 83% of respondents reported at least one lifetime traumatic event (0 events: 17%; 1-2: 47%; 3-4: 27%; 5+: 9%). Men most commonly reported having a prior life-threatening illness (49%), a spouse or child having a life-threatening illness (31%), and weapons fired in combat (23%); women most commonly reported prior life-threatening illness (40%), a spouse or child having a life-threatening illness (39%), or a child dying (26%). After adjustment, collective trauma was significantly associated with pain (0 events: 51%; 1-2 events: 52%; 3-4 events: 59%; 5+ events: 59%), dyspnea (50%; 53%; 58%; 64%), depression (23%; 32%; 37%; 42%), life satisfaction (72%; 66%; 60%; 55%), and loneliness (12%; 17%; 19%; 27%), all p< 0.001.
Older adults in the last years of life report a high prevalence of traumatic events which are associated with multiple domains of end-of-life well-being. Clinicians should adopt a universal trauma-informed approach to overall end-of-life care and management of physical and psychosocial needs.
Managing Suffering and Distress / Scientific Research
1. Participants will be able to understand the associations between wealth and end-of-life symptom prevalence.
2. Participants will be able to evaluate how hospice or Medicaid enrollment modifies the ...impact of wealth on end-of-life symptoms.
This study found wealth-related disparities in the end-of-life experiences of older adults, with lower wealth linked to a higher likelihood of experiencing 6+ end-of-life symptoms. Medicaid enrollment seems to mitigate this disparity, suggesting certain programs can reduce these differences.
Prior research examined health disparities in end-of-life (EOL) based on race, ethnicity and college education. This study examines wealth-related disparities in EOL experience among older adults.
Our study aims to: (1) Assess EOL symptom prevalence and associations with wealth; (2) Determine if wealth's effect on EOL symptoms is modified by hospice or Medicaid enrollment.
The study included 9,509 Health and Retirement Study (HRS) participants who died between 2000 and 2020 at age 65+. Wealth was measured by RAND household net worth variable at the last core interview before death4,5, categorized into bottom quartile, two middle quartiles, and top quartile. End-of-life symptoms, reported by proxies at the exit interview, included 10 symptoms. Our primary outcome was a binary variable, indicating presence of 6+ EOL symptoms.
The mean age at death was 81 (SD 9); 55% women, 83% White, and 15% college graduates. Overall, 28% of descendants experienced 6+ EOL symptoms. Those with low wealth had higher likelihood of 6+ EOL symptoms compared to middle or high wealth groups (36% vs. 28% vs. 23%, p< 0.001). These differences persisted after adjusting for age, gender, marital status, race or ethnicity, and college education (low-middle wealth: aOR=0.69 (CI: 0.60-0.78); low-high wealth: aOR=0.56 (CI: 0.47-0.65)). There was no significant difference in the effect of wealth among those enrolled in hospice. Medicaid enrollment seemed to diminish the difference between low and middle wealth groups (not in Medicaid: aOR=0.74 (CI: 0.59-0.95); in Medicaid: aOR=0.90 (CI: 0.71-1.12), p for interaction=0.133).
Lower wealth at the end of life is associated with worse EOL experience. However, enrollment in Medicaid decreases the difference between low and middle wealth groups.
Our findings suggest that Medicaid may alleviate wealth-related end-of-life differences. Further studies are needed to determine if the wealth directly impacts EOL outcomes, or if its effects are mediated by functional decline.
Under served, under resourced populations/Models of palliative/hospice care delivery
Purpose
Purpose of this study was to determine the impact of Oral Mucositis (OM) on health-related quality of life (HRQoL) and quality of life associated symptoms and functions in patients undergoing ...hematopoietic stem cell transplantation (HSCT).
Methods
Prospective, non-interventional single-center observational study at a German tertiary teaching hospital. Inpatient allogenic and autologous stem cell transplant patients ≥18-year-old with high-dose chemotherapy. OM was assessed with the WHO Oral Toxicity Scale, pain according to the Numeric Rating Scale (NRS) and the performance status using the ECOG Score. QOL was captured with the EORTC QLQ-C30 and the QLQ-OH15 questionnaires.
Results
Forty-five stem cell transplant patients (20 autologous, 25 allogenic) were enrolled between August 2016 and February 2017. Twenty-six (58%, 95% CI: 42% - 72%) patients developed OM (10 grade I, 4 grade II, 8 grade III, 4 grade IV). OM affected patients suffered more from pain, sore mouth and sensitive mouth. A lower physical functioning (34.5 vs 7.5,
p
= 0.003) and a lower oral health-related quality of life (24.3 vs 7.7,
p
= 0.006) was found in patients with OM development. There was found a positive correlation between the grade of OM and the NRS-value (
r
= 0.93, 95% CI: 0.89–0.96,
p
< 0.001).
Conclusion
OM is associated with health-related quality of life and quality of life associated functions and symptoms. More research should be performed to find ways to prevent OM and to stabilize patients’ quality of life during HSCT.
The epidemiology of pain during the last years of life has not been well described.
To describe the prevalence and correlates of pain during the last 2 years of life.
Observational study. Data from ...participants who died while enrolled in the Health and Retirement Study were analyzed. The survey interview closest to death was used. Each participant or proxy was interviewed once in the last 24 months of life and was classified into 1 of 24 cohorts on the basis of the number of months between the interview and death. The relationship between time before death and pain was modeled and was adjusted for age, sex, race or ethnicity, education level, net worth, income, terminal diagnosis category, presence of arthritis, and proxy status.
The Health and Retirement Study, a nationally representative survey of community-living older adults (1994 to 2006).
Older adult decedents.
Clinically significant pain, as indicated by a report that the participant was "often troubled" by pain of at least moderate severity.
The sample included 4703 decedents. Mean age (SD) of participants was 75.7 years (SD, 10.8); 83.1% were white, 10.7% were black, 4.7% were Hispanic; and 52.3% were men. The adjusted prevalence of pain 24 months before death was 26% (95% CI, 23% to 30%). The prevalence remained flat until 4 months before death (28% CI, 25% to 32%), then it increased, reaching 46% (CI, 38% to 55%) in the last month of life. The prevalence of pain in the last month of life was 60% among patients with arthritis versus 26% among patients without arthritis (P < 0.001) and did not differ by terminal diagnosis category (cancer 45%, heart disease 48%, frailty 50%, sudden death 42%, or other causes 47%; P = 0.195).
Data are cross-sectional; 19% of responses were from proxies; and information about cause, location, and treatment of pain was not available.
Although the prevalence of pain increases in the last 4 months of life, pain is present in more than one quarter of elderly persons during the last 2 years of life. Arthritis is strongly associated with pain at the end of life.
National Institute on Aging, National Center for Research Resources, National Institute on Musculoskeletal and Skin Diseases, and National Palliative Care Research Center.
Abstract
Background
Many older adults experience decline in function, but maintain high levels of life satisfaction. The factors associated with high life satisfaction among those with functional ...impairment are not well understood.
Objective
Examine the proportion of older adults with functional impairment reporting high life satisfaction and the predictors of high life satisfaction.
Design
Cross-sectional cohort study.
Setting
Health and Retirement Study.
Subjects
A total of 7,287 community-dwelling participants, 65 years or older, who completed the leave-behind questionnaire in 2014 or 2016.
Methods
The main predictor was having difficulty or needing help in performing Activities of Daily Living (ADL). The primary outcome was reporting high life satisfaction, defined using a three-item Diener scale. Significant factors were identified using modified Poisson regression models adjusted for demographic characteristics.
Results
Those with no ADL impairment were more likely to report high levels of life satisfaction than those with ADL difficulty or ADL dependence (54.4 vs 38.6 vs 27.6%, P < 0.001). Among those with ADL dependence, we identified several factors associated with high life satisfaction, including: not being lonely (38.2 vs 23.2%, ARR = 1.6 (1.2, 2.2)), satisfied with family life (35.1 vs 12.8%, ARR = 2.7 (1.6, 4.4)), and satisfied with financial situation (40.8 vs 16.6%, ARR = 2.5 (1.8, 3.6)). Similar associations were present among those with ADL difficulty.
Conclusions
A substantial proportion of older adults with ADL impairment report high life satisfaction, and it is associated with social and economic well-being. Understanding the factors associated with high life satisfaction can lead to clinical practices and policy guidelines that promote life satisfaction in older adults.
ABSTRACT
BACKGROUND
It is unknown whether subjective assessment of social status predicts health outcomes in older adults.
OBJECTIVE
To describe the relationship between subjective social status and ...functional decline in older adults.
DESIGN
Longitudinal cohort study.
SETTING
The Health and Retirement Study, a nationally representative survey of community-dwelling older adults (2004-2008).
PARTICIPANTS
Two thousand five hundred and twenty-three community-dwelling older adults.
MAIN MEASURES
Self-report of social status (SSS), categorized into three groups, reported by participants who marked a 10-rung ladder to represent where they stand in society. Four-year functional decline (new difficulty in any of five activities of daily living, mobility decline and/or death)
KEY RESULTS
Mean age was 64; 46% were male, 85% were white. At baseline, lower SSS was associated with being younger, unmarried, of nonwhite race/ethnicity, higher rates of chronic medical conditions and ADL impairment (P < 0.01). Over 4 years, 50% in the lowest SSS group declined in function, compared to the middle and highest groups (28% and 26%), P-trend <0.001. Those in the lowest rungs of SSS were at increased risk of 4-year functional decline (unadjusted RR = 1.91, CI 1.–9-2.46). The relationship between a subjective belief that one is worse off than others and functional decline persisted after serial adjustment for demographics, objective SES measures, and baseline health and functional status (RR 1.36, CI 1.08–1.73).
CONCLUSIONS
In older adults, the belief that one is in the lowest rungs of social status is a measure of socioeconomic distress and of significant risk for functional decline. These findings suggest that self-report of low subjective social status may give clinicians additional information about which older adults are at high risk for future functional decline.
Objectives
To determine the long‐term survival and independence of individuals with stroke and percutaneous endoscopic gastrostomy (PEG) tube placement.
Design
Retrospective cohort study.
Setting
A ...longitudinal nationally representative community‐based sample of older adults.
Participants
Individuals with stroke who had a PEG tube placed (N = 174, mean age 79, 51% female, 29% African American).
Measurements
Functional status before incident stroke was determined based on data from the Health and Retirement Study (HRS), a national longitudinal survey of community‐dwelling older adults, from 1993 to 2012. Hospitalizations for stroke and PEG placement were determined according to Medicare claims. HRS participants were interviewed, and outcomes of survivors interviewed in the 2 years after hospitalization are described. Survival and functional and eating ability of the cohort were examined. Groups were compared according to age and prestroke functional disability in activities of daily living (ADLs) because it was hypothesized that ADL disability would predict worse outcomes.
Results
In the 2 years after hospitalization, overall mortality was 66%. Fifteen participants survived and regained independent ADL function (9%). Of those who survived to a follow‐up interview, 33 (56%) could not eat independently, and 31 (53%) required assistance to walk across the room. Age of 85 and older was associated with worse outcomes (10% vs 29% at 2 years, P < .001), but baseline ADL disability was not.
Conclusion
In this community‐based sample, individuals who had had a stroke and a PEG tube placed had high mortality, and survivors were unlikely to be functional or mobile or to recover eating ability after hospitalization. A palliative care discussion including goals of care should occur before PEG tube placement is considered.
Context Most hip fracture care models are grounded in curative models where the goal is to return the patient to independent function. In many instances, however, hip fractures contribute to ...continued functional decline and mortality. While the negative impact of hip fractures is appreciated once they have occurred, what is less understood is what proportion of older adults have high illness burden prior to experiencing hip fracture and might benefit from geriatric palliative care. Objectives Using data from the Health and Retirement Study linked to Medicare claims (January 1992 through December 2010), we sought to understand the extent of premorbid illness burden prior to hip fracture. Methods Characteristics were based on the interview before hip fracture. Features used to indicate need for geriatric palliative care included evidence of functional and medical vulnerability, pain and depression. Results 856 older adults who experienced a hip fracture were compared to 851 age, gender and race-matched controls. Older adults with hip fractures had significantly more premorbid functional vulnerability (ADL dependent 25.7% vs 16.1% (p<0.001) ; dementia 16.2% vs 7.3% (p<0.001) ; use of helpers 41.2% vs 28.7% (p<0.001) ). They also experienced more medical vulnerability (multimorbidity 43% vs 29.8% (p<0.001) ; high healthcare utilization 30.0% vs 20.9% (p<0.001); and poor prognosis 36.1% vs 25.4% (p<0.001) in controls). There was no difference in premorbid pain and depression between subsequent hip fracture patients and controls. Conclusion A significant proportion of older adults have evidence of functional and medical vulnerability prior to hip fracture. For these individuals, integration of geriatric palliative care may be particularly important for optimizing quality of life and addressing the high morbidity experienced by this population.
1. To compare the psychosocial needs of spouses of persons living with dementia in the last years of life to spouses of persons with no cognitive impairment in the last years of life.
2. To ...understand clinical and policy-level strategies that can address the unique psychosocial needs of spouses of persons living with dementia prior to the death of their partners.
Spouses of persons living with dementia (PLWD) in the last years of life experience worsened loneliness, depression, and life satisfaction, compared to spouses of persons with no cognitive impairment in the last years of life. Clinical and policy approaches are needed to support the unique psychosocial needs of spouses of PLWD in the years prior to their partner's death.
Spouses of persons living with dementia (PLWD) in the last years of life may be at risk for psychosocial distress in the years prior to their partner's death.
To compare the psychosocial well-being of spouses of PLWD to spouses of persons with no cognitive impairment (PNCI) nearing the end of life.
We used a nationally-representative married couples cohort from the Health and Retirement Study (2006-2018), including spouses interviewed within 2 years of death of their partner (N& # 3f1,113), and who had data before and after the death of their partner (N & # 3f885). Cognitive impairment of partners included: No Cognitive Impairment (PNCI), Cognitive Impairment Not Dementia (CIND), and Dementia (PLWD). Outcomes included validated measures of loneliness, social isolation, depression, and life satisfaction. We used multivariable logistic regression to determine 1) the adjusted prevalence of each outcome among spouses, and 2) the change in outcomes for spouses before and after their partner's death.
Spouses were on average 73 years old (SD: 10), 66% women, 7% Black, 7% Hispanic, 24% married to persons with CIND, and 19% married to PLWD. After adjustment, in the two years prior to their partner's death, spouses married to PLWD experienced more loneliness (PNCI: 8%, CIND: 10%, PLWD: 18%; p< 0.003), depression (21%; 27%; 28%, p-value=0.18), and less life satisfaction (74%; 68%; 64%; p< 0.01). Spouses of PLWD were not more socially isolated. After death, bereaved spouses had similarly high prevalence of psychosocial outcomes across cognitive status (for example, loneliness 2 years after death: PNCI: 50%, CIND: 53%, PLWD: 47%).
Spouses of PLWD experience profound psychosocial distress years prior to the death of their partner, compared to spouses of PNCI nearing the end-of-life. Robust upstream clinical and policy-level programs to address psychosocial needs for spouses of PLWD in the years prior to death are needed.
Loss, Grief, Bereavement / Disease specific management
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