BACKGROUND: Cancer is the second leading cause of death globally, causing a substantial economic burden on cancer suffers and their families. The aim of this study is to explore the prevalence, determinants and consequences of catastrophic health expenditure (CHE) among urban and rural end-of-life (EOF) cancer patients in China.
METHODS: Using respondent-driven sampling and face-to-face interviews, field research was conducted with a specialist questionnaire. Data were collected on 792 cancer patients who died between June 2013 and June 2016 in China. The determinants of household catastrophic expenditure were identified by multivariate logistic regression.
FINDINGS: It is found that more than 80% of cancer patients received life-extending treatment. Extremely high rates of CHE were identified among EOL cancer patients, at 94.3% for urban families and 96.1% for rural families. After spending for health, 84.1% of urban and 91.1% rural EOL cancer patient households were impoverished, falling below the poverty line. For both urban and rural households, income was the most significant factor associated with catastrophic health expenditure (CHE). Health insurance did not adequately compensate for CHE. Rural families experienced higher CHE, lower levels of health care utilization, a different mix of health care access and higher rates of borrowing for out-of-pocket (OOP) health care expenditures than urban families. Both urban and rural households suffered long-term economic disadvantage due to CHE and borrowing for OOP medical care expenses.
CONCLUSIONS: EOL cancer patients experienced severe CHE, with families forced into poverty. With only about 1% of EOL cancer patients receiving palliative care, developing palliative care services and expanding the acceptance of palliative care in China is both urgent and essential. To help address impoverishment due to CHE, China should also develop targeted programs to reduce income inequality, especially rural-urban inequalities; increase access to health care; and accelerate health reform. Increasing the retirement age would provide households with more savings and wealth to withstand CHE.
Introduction: End of life care of terminally ill is a sensitive topic in our socio cultural ethos. In a country where Euthanasia policies are widely debated, dignified death is a desired form of death. Euthanasia literally means "good death". In India the debate still continues on practices related to euthanasia and its legalization until recently when the verdict on the passive euthanasia has been passed by the supreme court. In addition, lack of an effective palliative care system has led to complex situations towards the end of life. Globally, it is estimated that palliative care is needed in 40-60% of all deaths. However there is no training or facility to meet this demand.
Methodology: A focus group discussion (FGD) was carried out among 22 residents in a rural area of Tamilnadu to identify the social and cultural determinants of end of life care practices. A FGD guide was prepared and after an informed consent the study was undertaken. An in depth interview was carried out among a sub group of participants.
Results: The FGD and the IDI revealed several end of life practices in the rural areas such as Thalaikoothal, Feeding the ill with holy water and sand etc. The study also revealed the major determinants leading to such practices such as the social, and cultural beliefs in addition to economical and emotional factors.
Conclusion: Several factors determine the end of life decisions in a family ranging from economical to social and cultural factors. While we are examining these factors, it is important to strengthen the palliative care provision in the country by building capacity and integrating it in primary care.
Background: Little is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap.
Methods: Individual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients’ place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients’ socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs).
Results: We found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose–response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49–0.80; Model 2: APR range 0.79–0.98) and urban areas (Model 1: APR range 0.50–0.83; Model 2: APR range 0.98–0.99) were less likely to die there, compared to those who lived closer (i.e. = 10 min drive time). The effects were larger in rural areas compared to urban areas.
Conclusion: Geographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life.
Background: The quality of the dying experience among older adults should improve with a better understanding of the dying experience and its association with the place of death in Mainland China.
Objective: This study investigated the relationship between the dying experience and place of death among older Chinese adults in the context of an urban-rural bifurcated system.
Design: We used the end-of-life module data from the China Longitudinal Aging Social Survey conducted in 2014 and 2016 with an eligible sample of 352 decedents ages 60 and older. Facial expression and sadness at the end of life were indicators of the dying experience in the present study. We performed multiple regression models to examine the association between the place of death and dying experience after adjusting for an ecological array of factors at the individual, family, and community levels.
Results: The urban–rural differences in the association between facial expression at death and place of death were identified (interaction term: ß = 0.16, p = 0.004). Among the decedents with a rural residence status, dying in a hospital was associated with a more peaceful facial expression at death than dying at home (p < 0.001). Among the decedents with an urban residence status, the place of death was not significantly related to the dying experience.
Conclusion: Although home is perceived as a common place for death, the findings revealed that dying at home was less positive for rural older adults compared with dying in hospital. Bridging the gaps between urban and rural areas is necessary for the reform and construction of health care and long-term care systems in China.
Background: Therapeutic cannabis is being more widely used by patients to manage multiple symptoms, but the patterns of use in the palliative care population are not well defined.
Objective: The primary aim of this pilot study was to describe the use of cannabis among patients attending a palliative care clinic (PCC).
Design: The study was a retrospective chart review of patients seen at four different interval points during 2017 and 2018 in an ambulatory palliative care setting.
Setting/Subjects: The study was conducted at a 396-bed rural academic medical center in the PCC, where the majority of patients have oncological diseases.
Results: Clinicians saw 299 unique patients during the four one-month time periods reviewed. Eighty-three patients (27%) reported use of any form of cannabis. The most common reasons for cannabis use were pain (n = 49, 59%), anorexia (n = 16, 19%), insomnia (n = 14, 17%), nausea (n = 13, 16%), anxiety (n = 8, 10%), and depression (n = 5, 6%). Twenty-six patients (31%) used cannabis for more than one symptom. Among the 83 patients using cannabis, 60 (72%) were also prescribed opioids with 32% on immediate-release only and 25% on both immediate- and extended-release opioids. These 60 patients on opioids and cannabis represent 33% of all patients prescribed opioids in this clinic. Tetrahydrocannabinol was present in 25% of the 73 urine drug screens.
Conclusions: Our data show a significant minority of patients in a PCC use cannabis. Further research should focus on more detailed information about formulation use, methods of ingestion, perceived efficacy, side effects, cost, and standardization of clinical practices. Given the prevalence of cannabis use, further research into its efficacy, side effects, and safety is needed, including whether patients with prior/active substance use receive more or less benefit or harm from cannabis use.
Many patients with cancer live in rural areas and research is lacking on the efficacy of palliative care programs in rural community settings. This pilot study was conducted in a primarily rural setting where healthcare professionals delivered palliative care to 52 mostly lower income patients with a variety of cancers. They were assessed for physical, financial, psychosocial and overall symptom intensity at baseline and at three consequent assessments. This pilot study demonstrated the potential efficacy of an outpatient palliative care program in a mostly rural setting in the reduction of physical, psychosocial, and overall symptom intensity in patients with cancer.
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.
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.
BACKGROUND: In rural communities, providing hospice care can be a challenge. Hospice personnel sometimes travel great distances to reach patients, resulting in difficulty maintaining access, quality, cost-effectiveness, and safety. In 1998, the University of Kansas Medical Center piloted the country's first TeleHospice (TH) service. At that time, challenges with broad adoption due to cost and attitudes regarding technology were noted. A second TH project was launched in early 2017 using newer technology; this article updates that ongoing implementation.
METHODS: The Organizational Change Manager was followed for the guided selection of the hospice partner. The University of Kansas Medical Center partnered with Hospice Services, Inc. (HSI), a leader in rural hospice care, providing services to 16 Kansas counties. Along with mobile tablets, a secure cloud-based videoconferencing solution was chosen for ease of use.
RESULTS: From August 2017 through January 2018, 218 TH videoconferencing encounters including 917 attendees occurred. Calls were made for direct patient care, family support, and administrative purposes. These TH calls have been shown to save HSI money, and initial reports suggest they may strengthen the communication and relationships between staff, patients, and the patient's family.
CONCLUSION: Finding innovative, cost-effective, and community-driven approaches such as TH are needed to continually advance hospice care. TeleHospice's potential to supplement and improve hospice services while reducing costs is significant, but continued research is needed to understand best fit within frontier hospices, to inform future urban applications, and to address reimbursement.
Background: Access to palliative care has been associated with improving quality of life and reducing the use of potentially aggressive end-of-life care. However, many challenges and barriers exist in providing palliative care to residents in northern and rural settings in Ontario, Canada.
Aim: The purpose of this study was to examine access to palliative care and associations with the use of end-of-life care in a decedent cohort of northern and southern, rural and urban, residents.
Design: Using linked administrative databases, residents were classified into geographic and rural categories. Regression methods were used to define use and associations of palliative and end-of-life care and death in acute care hospital.
Setting/Participants: A decedent cancer cohort of Ontario residents (2007-2012).
Results: Northern rural residents were less likely to receive palliative care (adjusted odds ratio [OR] = 0.90, 95% confidence interval [CI]: 0.83-0.97). Those not receiving palliative care were more likely to receive potentially aggressive end-of-life care and die in an acute care hospital (adjusted OR = 1.20, 95% CI: 1.02-1.41).
Conclusions: Palliative care was significantly associated with reduced use of aggressive end-of-life care; however, disparities exist in rural locations, especially those in the north. Higher usage of emergency department (ED) and hospital resources at end of life in rural locations also reflects differing roles of rural community hospitals compared with urban hospitals. Improving access to palliative care in rural and northern locations is an important care issue and may reduce use of potentially aggressive end-of-life care.
The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.
BACKGROUND: Chronic lung diseases, such as COPD, are a growing health concern within the veteran population. Palliative care programs have mainly focused on the needs of people with malignant disease in the past, however the majority of those worldwide needing palliative care have a non-malignant diagnosis. Additionally, palliative care provision can often be fragmented and varied dependent upon a patient's geographical location. This study aimed to explore palliative care provision for veterans with non-malignant respiratory disease, and their family carers, living in a rural area of America.
METHODS: Qualitative study involving a convenience sample of 16 healthcare professionals from a large veteran hospital in Boise, Idaho. Data collection consisted of 5 focus groups which were transcribed verbatim and analysed using thematic analysis.
RESULTS: Healthcare professionals perceived that a lack of education regarding disease progression enhanced feelings of anxiety amongst veterans with NMRD, and their family carers. Additionally, the uncertain disease trajectory impeded referral to palliative and hospice services due to healthcare professionals own ambiguity regarding the veteran's prognosis. A particular barrier also related to this particular patient population, was a perceived lack of ability to afford relevant services and a lack of local palliative service provision. Healthcare professionals expressed that a compounding factor to palliative care uptake was the perceptions held by the veteran population. Healthcare professionals expressed that alongside aligning palliative care with dying, veterans also viewed accepting palliative care as 'surrendering' to their disease. Findings indicated that telemedicine may be a beneficial platform to which palliative care can be provided to veterans with NMRD, and their family carers, in rural areas using a digital platform.
CONCLUSION: Non-malignant respiratory disease is a life limiting condition commonly experienced within the veteran population. A new model of palliative care utilising a dynamic digital platform for this particular veteran population may provide an optimal way of providing efficient holistic care to areas with limited palliative services.
OBJECTIVE: To examine a rural-serving HBPC program's 12-year experience and historical trends to inform future program direction and expansion.
BACKGROUND: There is limited information about longitudinal trends in mature hospital-based palliative care (HBPC) programs serving racially diverse rural populations.
METHODS: This is a retrospective cross-sectional study of operational and patient-reported outcomes from the University of Alabama at Birmingham (UAB) Center for Palliative and Supportive Care (CPSC) inpatient (n=11,786) and outpatient (n=315) databases from October 2004 to March 2016.
RESULTS: Inpatients were a mean age of 63.7 years, male (50.1%), white (62.3%), general medicine referred (19.5%), primarily for goals of care (84.4%); 47.1% had "do not resuscitate/do not intubate" status and 46.9% were transferred to the Palliative Care and Comfort Unit (PCCU) after consultation. Median time from admission to consultation was three days, median PCCU length of stay (LOS) was four days, and median hospital LOS was nine days. Increased emergency department and cardiology referrals were notable in later years. Outpatients' mean age was 53.02 years, 63.5% were female, 76.8% were white, and 75.6% had a cancer diagnosis. Fatigue, pain, and disturbed sleep were the most common symptoms at the time of the visit; 34.6% reported mild-to-moderate depressive symptoms. Of patients reporting pain (64.8%), one-third had 50% or less relief from pain treatment.
DISCUSSION: The CPSC, which serves a racially diverse rural population, has demonstrated robust growth. We are poised to scale and spread our lessons learned to underserved communities.
BACKGROUND: There is little scholarship on culturally safe approaches to palliative care, especially for rural Indigenous clients. Thus, it is important to articulate how cultural safety can be enacted to support rural Indigenous Peoples and communities at end of life. We sought to identify strategies described in existing literature that have potential to deepen our understanding of culturally safe approaches to palliative care within rural and small-town settings in Canada.
METHODS: We searched for peer-reviewed and grey literature about Indigenous palliative care in rural and small-town settings in Canada, United States, New Zealand, and Australia. Medline, CINAHL, and Embase were searched. We thematically analyzed 22 resulting articles to address our interest in culturally safe approaches to palliative care in rural/small-town and on-reserve contexts.
RESULTS: The following themes were extracted from the literature: symbolic or small gestures; anticipating barriers to care; defer to client, family and community; shared decision-Making; active patient and family involvement; respectful, clear, and culturally appropriate communication; community ownership of services; empower cultural identity, knowledge, and traditions; and, policy.
DISCUSSION: Culturally competent practices can improve Indigenous palliative care services; however, they do not result in decolonized care. Strategies include: symbolic or small gestures; anticipating barriers to access; deferring to the client, family, and community members; and, collective decision making and family involvement. Culturally safe approaches contribute to institutional or organizational change and decolonized care. Strategies include: involvement of patient and family in service planning; reflection about individual and systemic racism; community ownership of services and; recognizing distinct Worldviews that shape care.
CONCLUSIONS: Culturally safe strategies invite decolonization of care through awareness of colonialism, racism, and discrimination. They invite commitment to building partnerships, power sharing, and decision-making in the delivery of care. Culturally competent activities may catalyze the adoption of a cultural safety framework; however, mislabeling of cultural competency as cultural safety may contribute to organizational inaction and a watering down of the spirit of cultural safety.
PURPOSE: Several studies have identified differences in end-of-life (EOL) care between urban and rural areas, yet little is known about potential differences in care processes or family evaluations of care. The purpose of this study was to examine the relationship between rurality of residence and quality of EOL care within the Veterans Affairs health care system.
METHODS: This study was a retrospective, cross-sectional analysis of 126,475 veterans who died from October 2009 through September 2016 in inpatient settings across 151 facilities. Using unadjusted and adjusted logistic regression, we compared quality of EOL care between urban and rural veterans using family evaluations of care and 4 quality of care indicators for receipt of (1) palliative care consult, (2) a chaplain visit, (3) death in an inpatient hospice unit, and (4) bereavement support.
FINDINGS: Veterans from rural areas had lower odds of dying in an inpatient hospice unit compared to veterans from urban areas, before and after adjustment (large rural OR 0.73, 95% CI: 0.70-0.77; P < .001, small rural OR 0.81, 95% CI: 0.77-0.86; P < .001, isolated rural OR 0.87, 95% CI: 0.81-0.93; P < .001). Differences in comparisons of other quality of care indicators were small and of mixed significance. No significant differences were found in family ratings of care in fully adjusted models.
CONCLUSION: Receipt of some EOL quality indicators differed with urban-rural residence for some comparisons. However, family ratings of care did not. Our findings call for further investigation into unmeasured individual characteristics and facility processes related to rurality.
This study explored the context effect in the relationship between capital (income, social support, and cultural capital) and changes in global meaning. We interviewed a sample of 352 bereaved Chinese elders from 18 communities in rural China and conducted hierarchical linear modeling for data analysis. The effects of social support and cultural capital in terms of traditional Chinese culture on changes in global meaning differed across communities. Social support earned its credit in buffering function against bereavement, whereas traditional Chinese culture posed a risk of elevating negative global meaning. More social support and positive global meaning are reliable predictors for enhancing the psychological health of bereaved elders.
Using six waves of longitudinal data (2001–2015) collected in Anhui, China (N = 2,131) and generalized estimating equations (GEE) models, this study fulfilled several objectives. First, the study compared the widowed to the married to examine if the transition to and duration of widowhood contributes to changes in depression. Second, the study examined if the bereavement-depression relationship is a process that precedes widowhood or is an abrupt change following the death of a spouse. Third, the study examined if social resources influence the bereavement-depression relationship. The study found that there is pre-widowhood effect on depression and that the widowhood event also contributes to increases in depression. Levels of post-widowhood depressive symptoms peak during the first six months bereavement and taper off within 25 months. Controlling for social support, contact with children, and living arrangements does not change the bereavement-depression relationship. The findings support Attachment Theory, which suggests that the loss of a spouse leads to emotional isolation that cannot be overcome with kin-based social support and social integration.
Palliative care is supportive medical care - at any age, diagnosis, or stage of illness - focusing on providing patients with relief from the symptoms, pain, and stress of a serious illness to improve uality of life. Americaâ€™s Care of Serious Illness 2015 State-By-State Report Card on Access to Palliative Care in Our Nationâ€™s Hospitals demonstrated the importance of palliative care. This report highlighted the need for each state to â€œcreate a multidisciplinary advisory board and/or task force to conduct a landscape analysis of available palliative care services to determine state capacity and develop appropriate recommendations for improving access to quality palliative care. Recent Wisconsin Senate and Assembly bills failed to pass pursuant to Senate Joint Resolution 1 in March 2018.
BACKGROUND: Lung cancer is the leading cause of cancer deaths globally. Individuals are diagnosed at an advanced stage with limited life expectancy.
OBJECTIVES: To explore potential health disparities in hospice utilization and length of stay (LOS) in a diverse sample of patients with lung cancer.
METHODS: Demographic and clinical information as well as data for hospice utilization and LOS was extracted from electronic health records. Data were analyzed using descriptive statistics, 2 tests, and an analysis of variance test.
RESULTS: Data from 242 patients were analyzed. In the sample, 33% (n = 80) were Black and 51% (n = 124) lived in a rural county. At the time of data collection, 67% of the sample was deceased and 36% (n = 86) chose to enroll in hospice. No disparities were found for race, age, gender, or rural/urban dwellers in hospice enrollment. No disparities were found for race, gender, or rural/urban dwellers for hospice LOS. Age was associated with hospice LOS ( P = .004). Those who were older were more likely to have a longer LOS.
CONCLUSION: Hospice utilization and LOS were low for all groups with lung cancer in a geographically and racially diverse region of the United States. Given the rates of mortality in lung cancer, discussions about the goals and benefits of hospice care may be beneficial and should be part of an ongoing dialogue throughout the disease trajectory.
PURPOSE: Providing specialized palliative care support to elderly patients in rural areas can be challenging. The purpose of this study was to gain a preliminary understanding of the experience of using mobile web-based videoconferencing (WBVC) for conducting in-home palliative care consults with elderly rural patients with life-limiting illness.
METHODS: This was a descriptive, exploratory, proof-of-concept study with a convenience sample of 10 WBVC visits. A palliative care clinical nurse specialist (PC-CNS), in the home with the patient/family and home care nurse (HC-N), used a laptop computer with webcam and speakerphone to connect to a distant palliative care physician consultant (PC-MD) over a secure Internet connection. Data was collected using questionnaires, interviews, and focus groups.
RESULTS: Analysis of qualitative data revealed four themes: communication, logistics, technical issues, and trust. Participants reported they were comfortable discussing concerns by WBVC and felt it was an acceptable and convenient way to address needs. Audiovisual quality was not ideal but was adequate for communication. Use of WBVC improved access and saved time and travel. Fears were expressed about lack of security of information transmitted over the Internet.
CONCLUSIONS: Using WBVC for in-home palliative care consults could be an acceptable, effective, feasible, and efficient way to provide timely support to elderly rural patients and their families. Having a health care provider in the home during the WBVC is beneficial. WBVC visits have advantages over telephone calls, but limitations compared to in-person visits, suggesting they be an alternative but not replacement for in-person consultations.