Purpose: The USA has observed a significant increase in the use of palliative care for patients diagnosed with advanced cancer. However, it is unknown how geographic variation affects patients’ use of palliative care services. We examined temporal and demographic trends in receipt of and timing of palliative care by state and region.
Methods: A retrospective cohort study of the Surveillance, Epidemiology, and End Results (SEER)-Medicare database. Study sample included community-dwelling patients aged = 65 years with metastatic lung cancer who were diagnosed between 2001 and 2015. Cochran-Armitage trend test was used to evaluate temporal trends in receipt of and timing of palliative care by states and census region.
Results: The proportion of metastatic lung cancer patients who received palliative care ranged from 16.4% in Washington and 16.3% in Connecticut to 6.4% in Louisiana. From 2001 to 2015, use of palliative care increased from 3.2 to 29.8% in the West region, from 3.3 to 31.9% in the Northeast region, from 3.8 to 36.2% in the Midwest region, and from 0.9 to 23.3% in the South region (all P < 0.001). The median time from the date of cancer diagnosis to the date of first palliative care visit varied geographically, from 44 days in Utah to 66 days in California. Hospital-based palliative care was most common in these states.
Conclusion: The substantial geographic variation in the use of palliative care suggesting a need for additional research on geographic disparities in palliative care and strategies that might improve state-level palliative care delivery.
Background: As the mortality attributable to dementia-related diseases in the United States escalates, providing quality and equitable end-of-life care for dementia patients across care settings has become a major public health challenge. Previous research suggests that place of death may be an indicator of quality of end-of-life care. This study aims to examine the geographical variations and temporal trends in place of death of dementia decedents in the US and the relationships between place of death of dementia decedents and broad structural determinants.
Methods: Using nationwide death certificates between 2000 and 2014, we described the changes in place of death of dementia decedents across states and over time. Chi-square test for trend in proportions was used to test significant linear trend in the proportion of dementia decedents at difference places. State fixed effects models were estimated to assess the relationships between the proportion of dementia decedents at difference places and state-level factors, particularly availability of care facility resources and public health insurance expenditures.
Results: Dementia decedents were more likely to die at home and other places and less likely to die at institutional settings over the study period. There was wide inter-state and temporal variability in the proportions of deaths at different places. Among state-level factors, availability of nursing home beds was positively associated with rates of nursing home/long term care deaths and negatively associated with rates of home deaths. Medicaid expenditure on institutional long term supports and services was positively associated with rates of nursing home/long term care deaths and negatively associated with rates of home deaths. Medicaid expenditure on home and community based services, however, had a positive association with rates of home deaths.
Conclusions: There was a persistent shift in the place of death of dementia decedents from institutions to homes and communities. Increased investments in home and community based health services may help dementia patients to die at their homes. As home becomes an increasingly common place of death of dementia patients, it is critical to monitor the quality of end-of-life care at this setting.
BACKGROUND: Acute hospitalization is a frequent reason for live discharge from hospice. Although risk factors for live discharge among hospice patients have been well documented, prior research has not examined the role of neighborhood socioeconomic characteristics, or how these characteristics relate to racial/ethnic disparities in hospice outcomes.
OBJECTIVE: To examine associations between neighborhood socioeconomic characteristics and risk for live discharge from hospice because of acute hospitalization. The authors also explore the moderating role of race/ethnicity in any observed relationship.
RESEARCH DESIGN: Retrospective cohort study using electronic medical records of hospice patients (N=17,290) linked with neighborhood-level socioeconomic data (N=55 neighborhoods). Multilevel models were used to identify the independent significance of patient and neighborhood-level characteristics for risk of live discharge because of acute hospitalization.
RESULTS: Compared with the patients in the most well-educated and affluent sections of New York City [quartile (Q)4], the odds of live discharge from hospice because of acute hospitalization were greater among patients who resided in neighborhoods where lower proportions of residents held college degrees [Q1 adjusted odds ratio (AOR), 1.36; 95% confidence interval (CI), 1.06-1.75; Q2 AOR, 1.41; 95% CI, 1.07-1.84] and median household incomes were lower (Q1 AOR, 1.42; 95% CI, 1.10-1.85; Q2 AOR, 1.43; 95% CI, 1.10-1.85; Q3 AOR, 1.39; 95% CI, 1.07-1.80). However, these observed relationships were not equally distributed by patient race/ethnicity; the association of neighborhood socioeconomic disadvantage and risk for live discharge was significantly lower among Hispanic compared with white patients.
CONCLUSIONS: Findings demonstrate neighborhood socioeconomic disadvantage poses a significant risk for live discharge from hospice. Additional research is needed to clarify the social mechanisms underlying this association, including greater attention to the experiences of hospice patients from under-represented racial/ethnic groups.
Background: It remains unclear whether the end-of-life (EOL) treatment/environment impacts on survival after anticancer treatment in terminally ill women with ovarian carcinoma (OC).
Objective: The aim of this investigation was to clarify how long those women actually survived after their last anticancer treatments and their hallmarks.
Setting, Design, and Measurements: Between 2003 and 2011, 79 terminally ill women with OC were retrospectively analyzed as a single institutional study. Postcancer treatment survival (PCS), defined as the duration between the last date of the abovementioned “cancer treatment” and that of death from any cause, was analyzed on stratification by type of supportive care or where patients spend their EOL. Inverse probability of treatment weighting (IPTW)—adjusted Kaplan–Meier and Cox regression analyses were employed to compare PCS between the two groups.
Results: The median PCS of patients was 10.8 weeks. In the multivariable analysis, the performance status and EOL place retained their significance as independent prognostic factors of poorer PCS (performance status [2–3/0–1]: hazard ratio [HR] = 3.279 [95% confidence interval; CI 1.967–5.586; p < 0.0001], EOL place [hospital/home hospice]: HR = 0.574 [95% CI 0.355–0.913; p = 0.0188]). In the IPTW-adjusted cohort, the median PCS rates were 15.0 and 9.7 weeks in patients of home/hospice and hospital groups, respectively (p = 0.04). Also in the IPTW cohort, the EOL place retained its significance (IPTW-adjusted: HR [95% CI]: 1.548 [1.009–2.374], p = 0.045, multivariable adjusted with IPTW: HR [95% CI]: 1.670 [1.077–2.588], p = 0.022).
Conclusion: Our current data may be hypothesis generating; it is possible that the EOL environment is a crucial prognostic factor for survival after anticancer treatment.
OBJECTIVES: Goal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver-patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. The study aimed to explore how the congruence between caregiver-patient preferred and actual locations of death influenced well-being in bereavement.
METHODS: Mixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient about 4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision-making, Core Bereavement Items (CBI), Health Related Quality of Life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process.
RESULTS: Patient preference-actual location congruence occurred for 53%; caregiver preference-actual location congruence occurred for 74%; caregiver-patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The Acute Separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver-patient location congruence, (2) caregiver-patient location incongruence, and (3) location informed bereavement.
CONCLUSIONS: Congruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver-patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers' sense of coherence and well-being in bereavement.
Advance care planning is spreading globally, but it is still a difficult task for healthy, community-dwelling Japanese residents. In Japan, it is called “life discussion,” and the first step is a discussion on goals, values, and preferences of medical care among family or other close persons, as knowledge on this topic is limited. This study aimed to explore the factors associated with the degree of engagement in life discussions among friends and family in depopulated areas. In 2 areas of Japan, 2466 individuals (aged 40-79 years) participated in this survey. Health/life habits, such as collecting health information and participating in some community activities, were significantly associated with the discussions more than attitude to medical/long-term care and community. Additionally, it was discussed how local governments could intervene to encourage advance care planning in depopulated areas. In conclusion, health habits or attitudes for care such as preference and desire for care among community-dwelling adults were associated with engaging in the discussions. It was proposed that local governments should motivate individuals to consider end-of-life experiences from a first-person perspective for creating advance care planning directives, and nurses could facilitate the discussion when death is imminent.
Mounting evidence supports oncology organizations' recommendations of early palliative care as a cancer care best practice for patients with advanced cancer and/or high symptom burden. However, few trials on which these best practices are based have included rural and remote community-based oncology care. Therefore, little is known about whether early palliative care models are applicable in these low-resource areas. This literature synthesis identifies some of the challenges of integrating palliative care in rural and remote cancer care. Prominent themes include being mindful of rural culture; adapting traditional geographically based specialty care delivery models to under-resourced rural practices; and using novel palliative care education delivery methods to increase community-based health professional, layperson, and family palliative expertise to account for limited local specialty palliative care resources. Although there are many limitations, many rural and remote communities also have strengths in their capacity to provide high-quality care by capitalizing on close-knit, committed community practitioners, especially if there are receptive local palliative and hospice care champions. Hence, adapting palliative care models, using culturally appropriate novel delivery methods, and providing remote education and support to existing community providers are promising advances to aid rural people to manage serious illness and to die in place. Reformulating health policy and nurturing academic-community partnerships that support best practices are critical components of providing early palliative care for everyone everywhere.
The economics of death and dying highlighted that environmental factors negatively influence healthcare sustainability. Therefore, this study conducted a system-based literature review to identify the negative externality of environmental damages on global healthcare reforms. Based on 42 peer-reviewed papers in the field of healthcare reforms and 12 papers in the field of environmental hazards, we identified 25 factors associated with death and dying and 15 factors associated with health-related damages across the world respectively. We noted that environmental factors are largely responsible to affect healthcare sustainability reforms by associating with the number of healthcare diseases pertaining to air pollutants. The study suggests healthcare practitioners and environmentalists to devise long-term sustainable healthcare policies by limiting highly toxic air pollutants through technology-embodied green healthcare infrastructure to attained efficient global healthcare recovery.
OBJECTIVE: The aim of the study is to compare the hope of rural and urban inhabitants in the terminal stage of a neoplastic disease covered by stationary hospice care.
MATERIAL AND METHODS: The study was carried out among patients in the terminal phase of a neoplastic disease. They were patients of both 24-hour and daily palliative and hospice care units throughout the country. The study group consisted of 246 patients, average age - 59.5, the youngest respondent was 18 and the oldest - 90. The B. L. Block (NCN-36) test, prepared for people struggling with serious life-threatening diseases, was used. Comparison of the results with regard to the place of residence was based on the test Friedman ANOVA and Kendall compatibility factor. The general comparison of hope in individual dimensions and globally with the division into the degree of urbanization, was based on the Kruskal-Wallis test.
RESULTS: On the basis of factor analysis, 4 scales constructed from 8 items branch were distinguished. The following scales are used to study hope in the situational dimension - health, the telek-temporal dimension - goals, the spiritual dimension - religious beliefs and in the emotional-affective (affective) dimension - motivations.
CONCLUSIONS: The strength of hope in people in the terminal phase of cancer, residing in villages, settlements, small, medium and large cities, was similar and depended on its magnitude. Of all the manifestations of hope, the greatest variation in results occurred in the subjects when they encountered serious problems and difficulties. The inhabitants of medium-sized cities were characterized by a higher hope at that time.
Background: The “Promoting Resilience in Stress Management” intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Aim: Utilizing data from a randomized clinical trial of Promoting Resilience in Stress Management versus Usual Care, we examined whether response to Promoting Resilience in Stress Management differed across key sociodemographic characteristics.
Design: Adolescents and young adults with cancer completed patient-reported outcome measures of resilience, hope, benefit-finding, quality of life, and distress at enrollment and 6 months. Participants were stratified by sex, age, race, and neighborhood socioeconomic disadvantage based on home address (Area Deprivation Index scores with 8–10 = most disadvantaged). Differences in the magnitude of effect sizes between stratification subgroups were noted using a conservative cutoff of d > 0.5.
Setting/participants: participants were 12 to 25 years old, English-speaking, and receiving cancer care at Seattle Children’s Hospital.
Results: In total, 92 adolescents and young adults (48 Promoting Resilience in Stress Management, 44 Usual Care) completed baseline measures. They were 43% female, 73% 12 to 17 years old, 64% White, and 24% most disadvantaged. Effect sizes stratified by sex, age, and race were in an expected positive direction and of similar magnitude for the majority of outcomes with some exceptions in magnitude of treatment effect. Those who lived in less disadvantaged neighborhoods benefited more from Promoting Resilience in Stress Management, and those living in most disadvantaged neighborhoods benefited less.
Conclusion: The “Promoting Resilience in Stress Management” intervention demonstrated a positive effect for the majority of outcomes regardless of sex, age, and race. It may not be as helpful for adolescents and young adults living in disadvantaged neighborhoods. Future studies must confirm its generalizability and integrate opportunities for improvement by targeting individual needs.
Guest deaths are an inevitable aspect of the hospitality industry. In Study 1, participants read a vignette in which the previous guest died of natural causes, suicide, or homicide. Those who learned of a death (a) saw the room as less valuable, (b) opted to stay in a more basic room in which no death occurred, despite both rooms being offered for free, and (c) anticipated feeling uneasy when imagining an overnight stay. In Study 2, we investigated the persistence of this bias. Perceived room value and anticipatory well-being can be expected to return to baseline levels only many years after the death event. Similar to “stigmatized properties” in real estate, these data confirm an irrational and recalcitrant cognitive bias surrounding consumers’ views of death-affected hotel rooms.
Death, disease and disaster can inflict anyone, anywhere and at any time. While occurrence of such an event could be absolved of any selective strike, the outcome reflects otherwise. Historical deprivations experienced by certain populations have caused more bereavement and sorrow to them than those who have experienced lesser or no deprivation. Therefore, the process which shapes the factors to yield such a result is important and needs to be understood for any policy suggestions and programmatic inputs. Loss of pregnancy and newborn inflicts sorrow and bereavement across space, time and social labyrinth. The degree of bereavement is likely to reduce with time, but space and social context govern the response to it. Therefore, factors contributing to the differentials vary in their demographic, social and economic characteristics. The loss of pregnancy and newborn remains inadequately addressed. Family and community play a significant role in coping. While the developed countries have institutional structure to address coping with the loss, the South Asian countries rely heavily on the family and the community for such support. The present review examines these trajectories across social groups.
Plus que le conflit, ce qui peut être problématique, voire destructeur, c'est son mode de résolution et surtout le cadre dans lequel celui-ci se déroule. Si l'environnement est dédié à la défiance, le conflit peut être problématique. En revanche, si c'est la confiance qui prédomine alors les différents interactants savent qu'il se situe dans un cadre bienveillant et, dès lors, si les arguments échangés sont bien à discuter, ils ne portent pas en eux de charge délétère.
BACKGROUND: There is evidence that social and contextual factors such as living alone are associated with outcomes in cancer patients. However, little is known about their influence on the use of palliative chemotherapy in metastatic colorectal cancer (mCRC). In this study, we examined social and contextual factors, including marital status, having children, and distance to a cancer center, for their association with the use of chemotherapy in patients with mCRC.
METHODS: A cohort of patients with mCRC diagnosed from 2006 to 2010 in Saskatchewan was evaluated. Logistic regression analyses were performed to assess the relationship between the variables and use of chemotherapy.
RESULTS: Of 569 patients, 326 (57%) received chemotherapy significant differences were noted between the chemotherapy versus no chemotherapy groups with respect to age (62 vs. 76 y), poor performance status (18% vs. 58%), comorbid illness (24% vs. 63%), low albumin (61% vs. 89%), anemia (61% vs. 87%), elevated alkaline phosphatase (53% vs. 84%), elevated creatinine (6% vs. 11%), hyponatremia (20% vs. 14%), primary tumor resection (61% vs. 47%), metastasectomy (21% vs. 9%), mean distance to cancer center (98.7±113.6 vs. 127.8±124.6 km), married/partnered (67% vs. 33%), and having children (64% vs. 36%). On multivariate logistic regression analysis, low performance status (odds ratio [OR], 5.1; 95% confidence interval [CI]: 3.1-8.1), not having children (OR, 3.3; 95% CI: 1.78-6.2), hyponatremia (OR, 2.9; 95% CI: 1.6-5.1), elevated alkaline phosphatase (OR, 2.9; 95% CI: 1.8-4.8), and low albumin (OR, 2.2; 95% CI: 1.2-3.8) were correlated with low rates of chemotherapy use.
CONCLUSIONS: Our results showed that the use of chemotherapy in patients with mCRC significantly varies between those with and without children.
BACKGROUND: Cancer imposes substantial burdens on cancer suffers, their families and the health system, especially in the end of life (EOL) of care patients. There are few developing country studies of EOL health care costs and no specialist studies of the disparities in cancer treatment and care costs by geographical location in China. We sought to examine geographical disparities in the types of cancer treatments and care costs during the last 3 months of life for Chinese cancer patients.
METHODS: Using snowball sampling and face-to-face interviews, field research was conducted with a specialist questionnaire. Data were collected on 792 cancer patients who died between July 2013 and June 2016 in China. Total EOL health care costs were modeled using generalized linear models (GLMs) with log link and gamma distribution.
RESULTS: Total health care costs were highest for urban (US$12,501) and western region (US$9808) patients and lowest for rural (US$5996) and central region (US$5814) patients. Our study revealed about 40% of the health care expenses occur in the last three months of life, and was mainly driven by hospital costs that accounted for about 70% of EOL expenditures. Patients faced out-of-pocket expenses for health care, with the ability to borrow from family and friends also impacting the type of treatment and health facility. Life-extending treatments per cancer patient was about two times that of patients receiving conservative treatments.Urban patients were more likely to receive life-extending treatments, financed by higher incomes and a greater capacity to borrow from family and friends to bridge the gap between health insurance reimbursements and out-of-pocket expenditures. Cancer patients in western region and urban area were significantly more likely to access hospice care.
CONCLUSIONS: We found significant urban-rural and regional disparities in EOL types of cancer treatment, utilization of medical care and the health care expenditures. The EOL cancer care costs imposed heavy economic burdens in China.We recommend better clinical guidelines, improved EOL conversations and fuller information on treatment regimes among patients, family caregivers and doctors. Policies and information should pay more attention to palliative care options and the socio-cultural context of cancer care decision-making by family.
Informed by theory from environmental gerontology, this study investigates how assisted living residents who are approaching end of life navigate and experience space. Since its development, environmental gerontology has moved beyond the concept of person-environment fit to encompass aspects of place attachment and place integration, processes by which inhabited impersonal space becomes a place of individual personal meaning and this person-place relationship evolves with changing needs. Our study is a secondary data analysis of in-depth interviews completed with the first 15 residents (mean age 88, range 65-103; 8 white and 7 black) recruited from four diverse assisted living communities in metropolitan Atlanta. Using interpretative phenomenological analysis, we identify five overarching themes within and across assisted living communities and their subthemes. Findings show that participants experience a neutral theme of shrinking space, negative themes of confinement and vulnerability, and positive themes of safety and intimacy. Results dovetail with other phenomenologically based environmental gerontology research from community-dwelling populations that indicate behavioral changes to accommodate aging and health decline. Findings have implications for interventions to improve place integration in AL and enhance residents' quality of life at end of life, including developing strategies to promote small meaningful journeys within context of shrinking life space.
OBJECTIVE: To measure and assess differences by educational level in the place of death for cancer patients, and to determine whether patterns of geographical disparities are associated with access to palliative care services in the municipality of residence.
METHOD: We analysed the death certificates of adults (older than 24) who died of cancer (ICD-10 C00 to C97) in Spain during 2015, either at home, in hospital or in a long-term care centre. Of the 105,758 individuals included in the study population, 75.2% lived in one of the 746 identifiable municipalities (more than 10,000 inhabitants). This individual database was combined with three economic databases at municipal level and with a directory of palliative care resources published by the Sociedad Española de Cuidados Paliativos. Multilevel models were estimated to predict the place of death according to individual characteristics. Generalised least squares regression models were then applied to the municipal effects estimated in the first stage.
RESULTS: The probability of dying in long-term care centre decreases as levels of education increase; the probability of dying at home, rather than in hospital, is higher for patients with higher education. Dying in hospital is an urban phenomenon. There are large differences between Spanish regions. Access to palliative services is only of marginal significance in accounting for the systematic differences observed between municipalities.
CONCLUSIONS: Developing specific plans for palliative care, with an active role being played by primary care teams, may help improve end-of-life care in Spain.
The present investigation sought to explore the difference in death anxiety between two different samples of students who studied at the same university in Lebanon in 1998 and 2015. Based on the changes in the social, economic, and political conditions that took place over these 17 years, it is possible to predict the change in death anxiety during this period. The participants in the 1998 study included 228 undergraduates, whereas the 2015 sample consisted of 292 students. All participants responded to Templer’s Death Anxiety Scale (DAS). Sex-related differences on the DAS were statistically significant in the 1998 group where women obtained a higher mean than the men. The t-test was significant at 0.001. Among women, the 2015 group obtained a significantly lower mean score than did their female counterparts in the 1998 group, whereas the difference between the two years in men was not significant. In sum, the hypothesis of the study was partially verified, i.e., a change in death anxiety level in some groups has happened as a result of the passage of time and other factors. In this case, death anxiety may be considered a fluid entity influenced by different environmental conditions.
Health care spending in the months before death varies across geographic areas but is not associated with outcomes. Using data from the prospective multiregional Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) study, we assessed the extent to which such variation is explained by differences in patients' sociodemographic factors, clinical factors, and beliefs; physicians' beliefs; and the availability of services. Among 1,132 patients ages sixty-five and older who were diagnosed with lung or colorectal cancer in 2003-05, had advanced-stage cancer, died before 2013, and were enrolled in fee-for-service Medicare, mean expenditures in the last month of life were $13,663. Physicians in higher-spending areas reported less knowledge about and comfort with treating dying patients and less positive attitudes about hospice, compared to those in lower-spending areas. Higher-spending areas also had more physicians and fewer primary care providers and hospices in proportion to their total population than lower-spending areas did. Availability of services and physicians' beliefs, but not patients' beliefs, were important in explaining geographic variations in end-of-life spending. Enhanced training to better equip physicians to care for patients at the end of life and strategic resource allocation may have potential for decreasing unwarranted variation in care.
The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and space. In this paper, we report on a long-term ethnographic study of a Pediatric Palliative Care Team (PPCT). Using the concepts of spatiality and temporality; Deleuze's concepts of smooth and striated spaces; Innis's concepts of space and time biases; Foucault's concept of heterotopian space-places with multiple layers of meaning; and a related concept of heterokairoi-moments in time with multiple possibilities-we consider how the PPCT constructs and reconstructs meaning in the midst of chaos, ethical dilemmas, and heartbreaking choices.