BACKGROUND: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers.
OBJECTIVE: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer.
METHODS: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support.
RESULTS: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services.
CONCLUSION: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.
OBJECTIVES: To compare aggressiveness of end-of-life (EoL) care for older cancer patients attributed to Medicare Shared Savings Programs with that for similar fee for service (FFS) beneficiaries not in an accountable care organization (ACO) and examine whether observed differences in EoL care utilization vary across markets that differ in ACO penetration.
DESIGN: Cross-sectional observational study comparing ACO-attributed beneficiaries with propensity score-matched beneficiaries not attributed to an ACO.
SETTING: A total of 21 hospital referral regions (HRRs) in the United States.
PARTICIPANTS: Medicare FFS beneficiaries with a cancer diagnosis who were 66 years or older and died in 2013-2014.
MEASUREMENTS: Outcome measures were claims-based quality measures of aggressive EoL care: (1) one or more intensive care unit (ICU) admissions in the last month of life, (2) two or more hospitalizations in the last month of life, (3) two or more emergency department visits in the last month of life, (4) chemotherapy 2 weeks or less before death, and (5) no hospice enrollment or hospice enrollment within 3 days of death. Analyses were adjusted for demographic and clinical characteristics of beneficiaries and practice characteristics.
RESULTS: Compared with beneficiaries not in an ACO, ACO-attributed beneficiaries had a higher rate of ICU admission during the last month of life (37.7% vs 34.0%; adjusted difference = +2.8 percentage points; 95% confidence interval (CI) = 1.0-4.6) but fewer repeated hospitalizations (14.5% vs 15.2%; adjusted difference = -1.7 percentage points; CI = -3.1 to -.3). Other measures did not differ for the two groups. Although the ICU admission rates tended to decrease as ACO-penetration rates increased (P < .01), ACO patients had higher rates of ICU admission than non-ACO patients in both medium and high ACO-penetration HRRs.
CONCLUSION: Cancer patients attributed to ACOs had fewer repeated hospitalizations but more ICU admissions in the last month of life than non-ACO patients; they had similar rates of other measures of aggressive care at the EoL. This suggests opportunities for ACOs to improve EoL care for cancer patients.
Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers' awareness of impending death and helping prepare them for the death of an elder with dementia.
In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples' ability to enact moral agency in making such decisions.
Aim: To examine factors that influence the health of older widows and widowers. The review question was: What is the evidence of the relationship between widowhood and health in older adults?
Design: Systematic review.
Data sources: Academic Search Elite, CINAHL, Medline (Ovid) and PubMed were searched for articles published between January 2013-December 2017.
Review methods: A systematic review of quantitative research with a qualitative thematic analysis.
Results: The selection process resulted in 12 studies. One of the themes that emerged was: emotional challenges related to experiences of bereavement, depression and anxiety, which was based on the sub-theme social support as the main strategy for coping with emotional pain and suffering. The second theme was: struggling with poor physical health. The findings indicate that healthcare professionals need knowledge and skills to deal with the health consequences of widowhood in old age. Building community teams can prevent emotional and physical health problems, as well as reduce mortality.
BACKGROUND: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase.
AIM: To identify the elements that nursing home residents' family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective.
DESIGN: Systematic review (PROSPERO no. 95581) with meta-aggregation method.
DATA SOURCES: Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied.
RESULTS: In all, 18 studies met inclusion criteria. A 'life crisis' often resulted in a changed need of care, and the transition towards palliative care was sustained by a 'patient-centered environment'. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident's end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care.
CONCLUSION: The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.
BACKGROUND: The number of old patients suffering from colorectal cancer rises. In clinical trials, old patients are underrepresented, and chemotherapy is significantly less often performed in elderly patients. We analyzed the impact of elder age for palliative chemotherapy in patients suffering from metastatic colorectal cancer, according to therapeutic drugs used, intensity of treatment performed, and therapeutic results.
MATERIALS AND METHODS: We analyzed consecutive patients with metastatic colorectal cancer treated in palliative intention in our department. Assessed data included age (> 75 years), sex, comorbidity, site of primary tumor, k-ras-status, site and amount of metastasis, number and kind of chemotherapeutic agents used, number of consecutive therapy lines performed, dose intensity, toxicity, time between start and end of palliative chemotherapy, and overall survival. Prognostic variables were tested in uni- and multivariate analysis.
RESULTS: Ninety-seven patients (69 < 75, 18 > 75 years) were included. Age groups were well balanced according to site of primary tumor, k-ras-mutational status, localization, and number of metastatic sites. Cardial and renal comorbidity was more frequent in elderly patients. The median number of chemotherapeutic drugs used and lines of therapy performed did not differ between age groups, except of oxaliplatin, which was significantly less often used in old patients. Median survival did not differ between age groups (23.4 vs. 23.5 months). In multivariate analysis, only left-sided primary tumor and more than 3 lines of therapy performed were prognostic positive variables.
CONCLUSION: Old patients can profit from palliative chemotherapy to the same extent as younger ones.
OBJECTIVES: About 10% of those who lose a loved one in hospice or palliative care settings will experience a mental health condition characterized by severe, prolonged grief responses. Criteria for this condition have evolved; we refer to this condition as Complicated Grief (CG) because it is one of the more common names. While there are some indications of associations between CG and poor physical health, explorations of the association between CG and pain is limited. The main objective of this study was to explore whether pain levels are higher in those with CG than those without, using a large population-based samples of Japanese older adults.
METHOD: The study analyzed data from the Japan HOspice and Palliative care Evaluation (J-HOPE) study, a cross sectional study conducted in 2008 that examined the experiences and outcomes among adults throughout Japan who had lost a loved one within a palliative department or hospice setting, via self-report survey. We examined a subsample sample of 324 individuals aged 50 and above who completed a measure of CG.
RESULTS: Family members with high pain group had statistically significantly higher CG symptoms than those with low pain group (M = 66.95 vs. M = 52.05), an association which remained when controlling for demographic and loss-related factors.
CONCLUSION: We found preliminary evidence of an association between CG symptoms and pain, which should be explored in additional samples. Should this finding be replicated, the mechanism of this association could be explored and treatment could potentially address both CG and pain.
OBJECTIVES: This study examined trajectories of emotional functioning in three domains (depressive symptoms, emotional and social loneliness) for individuals who experienced spousal bereavement, and investigated cross-domain adaptation. We hypothesized that emotional difficulties after bereavement would be more detectable in emotional loneliness than depressive symptoms or social loneliness.
METHOD: Using latent class growth analysis, we modelled changes in depressive symptoms, emotional loneliness and social loneliness from 12 years pre- to 12 years post-bereavement on data from 686 older adults to identify trajectories indicating adaptive and maladaptive functioning in each domain.
RESULTS: Most participants reported depressive symptoms below the clinically relevant threshold by showing a resilient (15.5%) or a slightly elevated (53.5%) trajectory post-bereavement. One-third (31%) reported clinically relevant depressive symptoms. More than half of the sample reported emotional loneliness post-bereavement, varying form prolonged (17%), increasing and prolonged (28.3%), and chronically high (8.9%) levels. Remaining participants displayed resilience (13.5%) or recovery (32.3%). Social loneliness showed four trajectories: very low and resilient (43.3%), low and resilient (27.5%), increasing (20.2%), and chronically high (9%) levels. One third of participants maintained adaptive, whereas 12% displayed maladaptive, functioning across all domains post-bereavement.
DISCUSSION: An increase in emotional loneliness was the most commonly observed change after spousal bereavement. This highlights the central role of emotional loneliness in depression after bereavement.
OBJECTIVES: In Canada, the rural elderly population is increasing in size, as is their need for palliative care services in these settings. This analysis aims to identify awareness-associated barriers to delivering rural palliative care services, along with suggestions for improving service delivery from the perspective of local health care providers.
METHODS: A total of 40 semi-structured interviews with various formal and informal health care providers were conducted in four rural and/or remote Canadian communities with limited palliative care resources. Interview data were thematically coded using Penchansky and Thomas' five dimensions of access (i.e. availability, (geographic) accessibility, accommodation, acceptability and affordability). Saurman's recently added sixth dimension of access - awareness - was also identified while coding and subsequently became the primary focus of this analysis.
RESULTS: Identified barriers to palliative care awareness and suggestions on how to enhance this awareness, and ultimately palliative care delivery, corresponded with three key themes arising from the data: limited palliative care knowledge/education, communication and coordination. Participants recognized the need for more palliative care education, open lines of communication and better coordination of palliative care initiatives and local resources in their communities.
CONCLUSIONS: These findings suggest that identifying the barriers to palliative care awareness in rural communities may be foundational to addressing barriers to the other five dimensions of access. A thorough understanding of these three areas of awareness knowledge, communication and coordination, as well as the connections between them, may help enhance how rural palliative care is delivered in the future.
CONTEXT: Hospice utilization is an end-of-life quality indicator. The Deep South has known disparities in palliative care that may affect hospice utilization.
OBJECTIVES: To evaluate the association among Deep South patient and hospital characteristics and hospice utilization.
METHODS: This retrospective cohort study evaluated patient and hospital characteristics associated with hospice among Medicare cancer decedents aged >=65 in 12 southeastern cancer centers between 2012-2015. We examined patient-level characteristics (age, race, gender, cancer type, and received patient navigation) and hospital-level characteristics (board-certified palliative physician, inpatient palliative care beds, and hospice ownership). Outcomes included hospice (within 90 vs 3 days of death). Relative risks (RR) and 95% confidence intervals evaluated the association between patient- and hospital-level characteristics and hospice outcomes using generalized log-linear models with Poisson distribution and robust variance estimates.
RESULTS: Of 12,725 cancer decedents, 4,142 (33%) did not utilize hospice. "No hospice" was associated with non-white (RR 1.24, 95% CI 1.17, 1.32) and non-navigated patients (RR 1.17, 95% CI 1.10, 1.25), and those at a hospital with inpatient palliative care beds (RR 1.15, 95% CI 1.10, 1.21). "Late hospice" (20%; n=1,458) was associated with being male (RR 1.31, 95% CI 1.19, 1.44) and seen at a hospital without inpatient palliative care beds (RR 0.82, 95% CI 0.75, 0.90).
CONCLUSION: Hospice utilization differed by patient and hospital characteristics. Patients who were non-white, and non-navigated; and, hospitals with inpatient palliative care beds were associated with no hospice. Research should focus on ways to improve hospice utilization in Deep South older cancer patients.
BACKGROUND: Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity therapy (DT) has clear feasibility but inconsistent efficacy. DT could be led by nurses or chaplains, the 2 disciplines within palliative care that may be most available to provide this intervention; however, it remains unclear how best it can work in real-life settings.
OBJECTIVE: We propose a randomized clinical trial whose aims are to (1) compare groups receiving usual palliative care for elderly patients with cancer or usual palliative care with DT for effects on (a) patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness); and (b) processes of delivering palliative spiritual care services (satisfaction and unmet spiritual needs); and (2) explore the influence of physical symptoms and spiritual distress on the outcome effects (dignity impact and existential tasks) of usual palliative care and nurse- or chaplain-led DT. We hypothesize that, controlling for pretest scores, each of the DT groups will have higher scores on the dignity impact and existential task measures than the usual care group; each of the DT groups will have better peaceful awareness and treatment preference more consistent with their cancer prognosis than the usual care group. We also hypothesize that physical symptoms and spiritual distress will significantly affect intervention effects.
METHODS: We are conducting a 3-arm, pre- and posttest, randomized, controlled 4-step, stepped-wedge design to compare the effects of usual outpatient palliative care and usual outpatient palliative care along with either nurse- or chaplain-led DT on patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness). We will include 560 elderly patients with cancer from 6 outpatient palliative care services across the United States. Using multilevel analysis with site, provider (nurse, chaplain), and time (step) included in the model, we will compare usual care and DT groups for effects on patient outcomes and spiritual care processes and determine the moderating effects of physical symptoms and spiritual distress.
RESULTS: The funding was obtained in 2016, with participant enrollment starting in 2017. Results are expected in 2021.
CONCLUSIONS: This rigorous trial of DT will constitute a landmark step in palliative care and spiritual health services research for elderly cancer patients.
This study aims to enrich the knowledge of the effects of traditional Chinese culture on bereavement outcomes among older Chinese, and to examine the moderating role of occupation in the relationship between traditional culture and bereavement outcomes. A sample of 352 older Chinese in widowhood was interviewed by quota sampling. A scale of faith in traditional Chinese culture was developed and confirmed by factor analysis. Complicated grief (CG) functioned as the outcome variable. Results showed that faith in traditional culture did affect CG among the sample, and previous occupation moderated the effect of traditional culture on CG. That is, the effect of faith in Chinese culture on CG is stronger in the non-peasant group than the peasant group. The results broaden the knowledge of spousal bereavement in a Chinese context. Services such as death education and occupational therapy were recommended according to this study.
The goal of the presented research was to investigate if wisdom plays a mediating role in the relationships between meaning in life and the attitude toward death in the period of middle and late adulthood. A study was carried out that included 567 persons aged 40 to 75 years. Three measures were used: Personal Meaning Profile, Three-Dimensional Wisdom Scale, and Death Attitude Profile-Revised. The conducted analyses allowed the authors to confirm the mediating role of wisdom in the relationships between meaning in life and fear of death as well as death avoidance in persons during the period of middle and late adulthood.
OBJECTIVES: This study aims to identify heterogeneous depressive symptom trajectories among the widowed elderly in China, to explore predictive variables of latent class membership, and to detect between-classes differences in life satisfaction across time.
METHOD: Data of 198 individuals widowed between 2011 and 2013 were drawn from The China Health and Retirement Longitudinal Study (CHARLS), a nationally representative survey. Latent class growth analysis was employed to identify depressive symptom trajectories across 2011, 2013, and 2015, and a three-step auxiliary approach was applied to detect predictive variables of latent class membership. Mixed Analysis of Variances was followed to make between-class comparisons on life satisfaction across time.
RESULTS: Four grieving trajectories were identified: resilient (54.6%), chronic grief (23.7%), depressed-improved (11.6%), and chronic depression (10.1%). Older age, living exclusively with spouse before widowhood, and agricultural Hukou were significant predictors of depressed-improved, chronic grief, and chronic depression patterns, respectively. Life satisfaction in all groups except for the resilient one remained stable across time, and that of the chronic depression group was significantly lower than those of all the remaining groups.
CONCLUSION: Consistent depressive symptom trajectories during late-life widowhood exist across nations while the specific culture, values, and resources in the Chinese context may have contributed to a particularly high proportion of the chronic grief trajectory. More efforts should be made to identify patterns with predictors before support are provided, and interventions need to be tailored to target specific needs in each subgroup of the elderly during their transitions to widowhood.
Increased mortality after spousal bereavement has been observed in many populations. Few studies have investigated the widowhood effect in a traditional culture where the economy is underdeveloped. The reasons for the widowhood effect and its gender dynamic are not well understood. In this study, we assessed whether the widowhood-associated excess mortality exists and differs by gender and living arrangement in rural China. We used a six-wave panel of data derived from rural people over 60 years old in the Chaohu region of China. Cox regression analyses suggest that there was a positive effect of spousal loss on mortality for older rural Chinese and this effect was gender different. Our findings also suggest that living with adult children after spousal loss played a protective role in reducing the risk of older men's death, though it tended to increase older men's mortality risk in general.
PURPOSE: Although it is accepted that in general spousal caregivers of patients with cancer are under high emotional and physical strain, little is known about the quality of life specifically among spousal caregivers of older cancer patients. The aim of the current study is to explore the emotional toll of spousal caregivers of cancer patients aged 65-85 years.
METHODS: This study surveyed 242 spousal caregivers of patients = 65 years old, diagnosed with cancer, treated with curative or palliative intent, and within 6 months of treatment at enrollment. Standardized measures completed by the caregivers included depression measure (Geriatric Depression Scale); distress (Distress Thermometer); and social support (the Cancer Perceived Agents of Social Support). Logistic regression analyses were used in order to identify the predictor of clinical depression and distress. The analyses were adjusted for patient (sociodemographic, functional performance, and medical status) and caregiver (sociodemographic and social support) factors.
RESULTS: Among the caregivers, the frequencies of clinical depression and distress were 16.5% and 28% respectively. Increasing patient age and time from diagnosis were associated with reduced levels of caregiver depression. Higher levels of friends and spousal support (support from the patients) were associated with non-clinical levels of depression and distress.
CONCLUSION: Increasing patient age and caregiver's perceived spousal support may both have a positive effect on caregivers' levels of depression. This can be utilized by clinicians in the process of empowering older patients and their spousal caregivers to confront the challenges of cancer treatment into advanced old age.
BACKGROUND: Little is known about the patterns of end-of-life (EOL) health care for older Mexican-Americans with or without a diagnosis of Alzheimer's disease and related dementias (ADRD). Our objective was to investigate the frequency of acute hospital admissions, intensive care unit (ICU) use, and ventilator use during the last 30-days of life for deceased older Mexican-American Medicare Beneficiaries with and without an ADRD diagnosis.
METHODS: We used Medicare claims data linked with survey information from 1,090 participants (mean age of death 85.1 years) of the Hispanic EPESE. Multivariable logistic regression models were used to estimate the odds for hospitalization, ICU use, and ventilator use in the last 30-days of life for decedents with ADRD compared to those without ADRD. Generalized linear models were used to estimate risk ratio for length of hospital stay (LOS).
RESULTS: Within the last 30-days of life, 64.5% of decedents had an acute hospitalization (59.1% ADRD, 68.3% no ADRD), 33.9% had an ICU stay (31.3% ADRD, 35.8% no ADRD), and 17.2% used a ventilator (14.9% ADRD, 18.8% no ADRD). ADRD was associated with significantly lower hospitalizations (OR=0.67, 95% CI=0.50-0.89) and shorter LOS (RR=0.77, 95% CI=0.65-0.90).
CONCLUSION: Hospitalization, ICU stay, and ventilator use are common at the end of life for older Mexican-Americans. The lower hospitalization and shorter LOS of decedents with ADRD indicate a modest reduction in acute care use. Future research should investigate the impact of EOL planning on acute-care use and quality of life in terminally ill Mexican-American older adults.
This perspective review considers analytic features of the design of a longitudinal trial regarding antimicrobial therapy in older terminal cancer patients receiving palliative care. We first overview antimicrobial use at the end of life; both the potential hazards and benefits. Antimicrobial prescribing should consider both initiation as well as cessation of medications when analyzing the burden of medications. Approaches to decision making regarding antimicrobial use are presented and the importance of health literacy in these decision processes. We next present aspects of both feasibility and comparative trial design with a health literacy intervention to reduce antimicrobial use in older terminal cancer patients receiving palliative care. Considerations to clustered randomization and given that infections can reoccur over a trial period, we share suggestions of longitudinal modeling of clustered randomized trial data.