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.
This literature review aimed to answer the focus question: are district nurses well placed to provide equitable end of life care (EOL) for homeless individuals? It focused on 10 primary research studies, from which two themes emerged and subsequently formed the basis of the discussion: (1) the difficulty in predicting disease trajectory in people who are homeless and (2) the gaps in existing systems. The main findings from these themes were a lack of education on the recognition of the dying and a general lack of knowledge of the complex challenges faced by and health needs of homeless people, which cause stigma from both the general public and health professionals towards these marginalised individuals. Further, there is certainly a lack of suitable places to deliver palliative and EOL care for people who are homeless. Available services are inflexible and have no tolerance for substance misuse, which creates an access barrier for homeless people in need of EOL care.
INTRODUCTION: Data-based research has rarely addressed advance directives (ADs) in community-dwelling Korean cancer survivors. The purpose of this study was to examine the relationship between AD treatment choices and decisional conflicts among low-income, home-based cancer management recipients.
METHOD: This study uses a cross-sectional, correlational design. The cancer survivors completed the questionnaires (Korean-Advance Directive model and Decisional Conflict Scale).
RESULTS: Among the 103 participants (average age 67.92 years), 56.3% had solid cancer. Hospice care was the most desired (68.9%), followed by hemodialysis (18.4%), cardiopulmonary resuscitation/ventilation support (15.5% for each), and chemotherapy (12.6%). Patients who were older, unmarried, unemployed, or underweight/obese; lived alone; or had lower education experienced greater decisional conflicts. In the multivariate analyses, no hospice preference was associated with greater decisional conflicts ( t = -2.63, p = .01).
DISCUSSION: Early integration of AD discussion with the nurse-led, home-based service for this vulnerable population could serve as a liaison for quality and continuity of cancer survivorship care.
CONTEXT: Completion of advance directives (ADs) enhances the likelihood of receiving goal-concordant treatments near the end of life. Previous research on community samples have shown that completion of ADs is less common in lower socioeconomic status demographic group; there is a paucity of such research in patients with cancer.
OBJECTIVES:: To study the effect of income and education on the completion of ADs.
HYPOTHESIS: Patients with cancer having lower incomes and education levels would be less likely to report completing ADs.
METHODS: We conducted cross-sectional analyses of data provided by patients (n = 265) enrolled in the Values and Options in Cancer Care clinical trial. Patients with advanced cancer reported whether they had (1) completed a living will or (2) designated a health-care proxy. Response options for both questions were yes (scored 1), no (scored 0), and unsure (scored 0). We studied the association of lower household income (=US$20 000) and education level (never attended college) with AD scores.
RESULTS: Patients with lower annual incomes had lower AD scores (estimate -0.44; confidence intervals [CI]: -0.71 to -0.16, P = .001); the association between higher educational attainment (some college or more) and completion of ADs was not statistically significant (estimate 0.04, CI: -0.16 to 0.24, P = .70).
CONCLUSION: Interventions to promote completion of ADs among lower income patients with serious illnesses are needed.
For most families, the preferred location of death for their child is home, yet most children still die in the hospital. Many children with life-threatening and life-limiting illness are medically dependent on technology, and palliative transport can serve as a bridge from the intensive care unit to the family's home to achieve family-centered goals of care. Palliative transport may also present an opportunity to prioritize cultural care and rituals at end of life which cannot be provided in the hospital. We describe a case series of pediatric patients from communities espousing markedly diverse cross-cultural values and limited financial resources. Specific cultural considerations at end of life for these children included optimizing the presence of the shared community or tribe, the centrality of healing rituals, and varied attitudes toward withdrawal of life-sustaining medical treatment. By addressing each of these components, we were able to coordinate palliative transport to enhance cross-cultural care and meaning at end of life for children with life-limiting illness.
Palliative care has demonstrated effectiveness in alleviating the biological, emotional, social, and spiritual symptoms that accompany serious illness, and improving quality of life for seriously ill individuals and their family members. Despite increasing availability, there are significant disparities in access to and utilization of palliative care, particularly among diverse, low-income, and community-dwelling older adults with chronic illness. Training frontline service providers is a novel approach to expanding access to palliative care among underserved elders. This article presents a process and outcome evaluation of a palliative care curriculum that was developed and piloted for geriatric case managers in a large urban area. We describe the background, planning, design, implementation, and preliminary outcomes associated with a pilot implementation of the curriculum. We conclude with implications for replicating efforts to enhance frontline providers' knowledge, skills, and self-efficacy in extending palliative care to communities that lack access to critical supports for their burdensome symptoms.
Context: Better understanding of clinicians' skill communicating with their patients and of patients' trust in clinicians is necessary to develop culturally sensitive palliative care interventions. Race/ethnicity, socioeconomic status, and religiosity have been documented as factors influencing quality of communication and trust.
Objectives: The objective of this study was to explore associations of seriously ill patients' race/ethnicity, socioeconomic status, and religiosity with patients' ratings of the quality of clinicians' communication and trust in clinicians.
Methods: An observational analysis was performed using baseline data from a multicenter cluster-randomized trial of a communication intervention. We enrolled consecutive patients with chronic, life-limiting illnesses (n = 537) cared for by primary and specialty care clinicians (n = 128) between 2014 and 2016 in outpatient clinics in Seattle, Washington. We assessed patient demographics (age, gender, race/ethnicity, education, income, and self-rated health status), Duke University Religion Index, Quality of Communication Scale, and Wake Forest Physician Trust Scale. We used probit and linear regression and path analyses to examine associations.
Results: Patients providing higher ratings of clinician communication included those belonging to racial/ethnic minority groups (P = 0.001), those with lower income (P = 0.008), and those with high religiosity/spirituality (P = 0.004). Higher trust in clinicians was associated with minority status (P = 0.018), lower education (P = 0.019), and clinician skill in communication (P < 0.001).
Conclusion: Contrary to prior studies, racial/ethnic minorities and patients with lower income rated communication higher and reported higher trust in their clinicians than white and higher income patients. More research is needed to identify and understand factors associated with quality communication and trust between seriously ill patients and clinicians to guide development of patient-centered palliative care communication interventions.
The process of dying pronounces inequities, particularly for structurally vulnerable populations. Extending recent health geography research, we critically explore how the 'places' of formal healthcare settings shape experiences of, and access to, palliative care for the structurally vulnerable (e.g., homeless, substance users). Drawing on 30 months of ethnographic data, thematic findings reveal how symbolic, aesthetic, and physical elements of formal healthcare 'places' intersect with social relations of power to produce, reinforce, and amplify structural vulnerability and thus, inequities in access to care. Such knowledge may inform decision-makers on ways to enhance equitable access to palliative care for some of societies' most vulnerable population groups.
Aim: This study aimed to compare the quality of life (QoL) of cancer patients, with an Eastern Cooperative Oncology Group (ECOG) performance of 3-4, in contact with or without contact, with a specialized palliative care unit (PCU) at a low-resource governmental cancer hospital, as well as studying the impact of this contact on the QoL in their caregivers.
Materials and Methods: Hospitalized patients with an ECOG performance of 3 or 4 and their primary caregiver were asked to participate in this observational study. Patients in contact with the specialized PCU and their closest caregivers formed Group A, while patients and families without this contact formed Group B. Contact was mainly one consultation. The patients were asked to complete the Palliative Care Outcome Scale (POS), and the caregivers were asked to complete the Hospital Anxiety and Depression Scale (HADS) and the distress thermometer (DT).
Results: There was no statistically significant difference between the median POS values of the patient groups, neither regarding the total sum nor per any item. There were also no statistically significant differences between the median HADS values and median DT values when comparing the caregivers to Group A and B.
Conclusion: Consultation with a specialized PCU at this tertiary referral center did not alter the QoL of patients with an ECOG performance of 3-4 nor did it affect the psychological well-being of their caregivers. We argue that monitoring prescribed treatment and follow-up is a necessary component of PC.
OBJECTIVES: To identify patterns of access to and use or provision of palliative care services in medically underserved and vulnerable groups diagnosed with cancer.
DATA SOURCES: Google Scholar, PubMed, MEDLINE, and Web of Science were searched to identify peer-reviewed studies that described palliative care in medically underserved or vulnerable populations diagnosed with cancer.
CONCLUSION: Disparities in both access and referral to palliative care are evident in many underserved groups. There is evidence that some groups received poorer quality of such care.
IMPLICATIONS FOR NURSING PRACTICE: Achieving health equity in access to and receipt of quality palliative care requires prioritization of this area in clinical practice and in research funding.
OBJECTIVE: To describe the barriers and facilitators of end-of-life (EOL) care for Veterans without stable housing (VWSH) as perceived by Veterans at 1 VA medical center and EOL care staff.
DESIGN: Qualitative descriptive study. Secondary applied content analysis of data from interviews and focus groups in our parent study.
SETTING/PARTICIPANTS: VA Puget Sound Health Care System and VWSH.
RESULTS: The core emergent theme in the words of Veterans and health-care workers was "meet me where I am," a statement of what many Veterans want most from their health care. Barriers and facilitators often reflected the presence or absence of important factors such as relationship and trust building, care coordination and flexibility, key individuals and services, and assistance in navigating change.
CONCLUSIONS: These findings suggest that to improve health care for VWSH, interventions must be multifaceted, including a suite of support services, flexibility and creative problem-solving, and adaptations in communication approaches. The authors offer specific recommendations for improving EOL care for VWSH based on these findings.
An estimated 1.5 billion people across the globe live with chronic pain, and an estimated 61 million people worldwide experience unrelieved serious health-related suffering. One-sixth of the global population lives in India, where approximately 10 million people endure unrelieved serious health-related suffering. The state of Kerala is home to Pallium India, one of the most sophisticated palliative care programs in the country. This private organization in Trivandrum provides palliative and hospice care to underresourced populations and emphasizes holistic pain treatment. The current project features the pain stories of six patients who received treatment from Pallium India. Basic patient demographic information was collected, and a Pallium India staff member who was fluent in Malayalam and English asked questions about each patient's pain experience. Pain narratives illustrate the substantial impact of Pallium India's home visit program and the role of total pain assessment in delivering high-quality palliative care.
Les soins palliatifs peuvent-ils exister dans un continent où règne le dénuement ? Ne peut-on envisager autrement l'accompagnement des mourants ? Etre avec, parler, entourer physiquement, sont, aussi, une manière d'aider à franchir le passage vers le pays des ancêtres.
BACKGROUND: Palliative care aims to reduce physical suffering and the emotional, spiritual, and psychosocial distress of life-limiting illness. Palliative care is a human right, yet there are vast disparities in its provision: of the 40 million people globally in need of palliative care, less than 10% receive it, largely in high-income countries. There is a particular paucity of data on palliative care needs across the spectrum of incurable disease in Ethiopia.
OBJECTIVES: The aims of this research were to assess the overall burden of life-limiting illness, the costs associated with life-limiting illness, and barriers to accessing palliative care in Ethiopia.
DESIGN: Mixed-methods case-series.
SETTING/SUBJECTS: One hundred adults (mean age: 43.7 ± 14 years, 64% female) were recruited at three outpatient clinics (oncology, HIV, noncommunicable disease) and hospice patient homes in Ethiopia.
MEASUREMENTS: Four internationally validated questionnaires were used to assess physical symptoms, psychosocial distress, and disability. In-depth interviews gauged poverty level, costs of care, and end-of-life preferences. Qualitative data were analyzed by thematic content, quantitative data by standard descriptive, frequency and regression analyses.
RESULTS: In oncology, 95.5% of the population endorsed moderate or severe pain, while 24% were not prescribed analgesia. Importantly, 80% of the noncommunicable disease population reported moderate or severe pain. The mean psychosocial distress score was 6.4/10. Severe disability was reported in 26% of the population, with mobility most affected. Statistically significant relationships were found between pain and costs, and pain and lack of well-being. Very high costs were reported by oncology patients. Oncology withstanding, the majority of subjects wished to die at home. Oncology patients cited pain control as the top reason they preferred a hospital death.
CONCLUSION: There are extensive unmet palliative care needs in Ethiopia. Untreated pain and high costs of illness are the major contributors to psychosocial distress and financial crisis in this Ethiopian population.
BACKGROUND: Site of death is an important quality indicator for patients with terminal illness. Racial and ethnic disparities exist in the quality of end-of-life care. This study explores the site of death of patients admitted for and dying of complications of acute neurovascular events in a hospital network in an urban, low-income, predominantly minority community.
METHODS: This is a retrospective cohort study of patients admitted to 1 of 3 general hospitals that are part of an academic medical center in Bronx, New York, with the diagnosis of acute ischemic stroke, intracerebral hemorrhage, or subarachnoid hemorrhage who died during the index admission or were discharged with hospice services. The main outcome was location of death (palliative care inpatient unit [IPU] at the medical center or hospice services at discharge vs death on any other IPU).
RESULTS: A total of 655 patients admitted with acute neurovascular events from January 1, 2009, to March 1, 2015, died or were discharged with hospice services and were included in the analysis. Of those patients, 238 (36.3%) were black, 233 (35.5%) were Hispanic, and 184 (28.1%) were white. A total of 178 (24.4%) died on the palliative care unit or were discharged with hospice services, including 55 black patients (23.1%), 52 (28.3%) white patients, and 53 (22.7%) Hispanic patients. These differences were not statistically significant, even when controlling for confounders.
CONCLUSION: This study did not show a difference in site of death in our institution by race or ethnicity, which is considered an important quality end-of-life care metric.
Although they experience high rates of chronic illness, low-income minority communities have traditionally underutilized palliative care services compared to whites and those with higher incomes. One reason for this trend is lack of screening by community providers. We utilized a community-based participatory research approach to develop and implement an innovative multidomain palliative care screening tool in aging service agencies. Participants were aging service providers and clients in the East and Central Harlem neighborhoods of New York City, which are characterized by high poverty, largely African American and Latino populations, disproportionally high rates of chronic conditions, and limited health-care access. Screening tool development included reviewing existing measures and obtaining feedback from an expert panel, aging service providers, and older adults. We developed a 22-item tool covering 3 domains of palliative care need (physical symptoms, emotional concerns, and goals of care), which can be administered in 10 to 15 minutes. Sixteen providers at 2 aging service agencies were trained to use the tool over a 3-month pilot period. The tool showed evidence of feasibility of implementation, with 44 older adult clients screened. Providers reported high acceptability, 36% of clients screened positive, and the majority accepted referrals to outpatient palliative care clinics. The screening tool has the potential to increase palliative care utilization among underserved community-dwelling older adults and may improve their quality of life, potentially in communities worldwide. Future work should examine the psychometric proprieties of the tool, examine predictors of positive screens, explore its impact on clinical outcomes, and expand its reach.
La prise en charge de la fin de vie et de la mort n’est pas exceptionnelle dans les situations de grande précarité. Une étude descriptive rétrospective a été réalisée, analysant les dossiers de 18 personnes décédées entre le 1er juin 2013 et 15 juillet 2016, ayant en commun d’avoir été prises en charge au sein d’un établissement accueillant des personnes sans domicile. L’objectif principal était de relever les principales caractéristiques médico-psycho-sociales. L’âge moyen lors du décès était de 54,8 ans. Il existait une surreprésentation des conduites addictives et des maladies chroniques. Les principales causes de décès étaient l’évolution d’une néoplasie et les complications liées à l’alcoolisme. Cinq personnes ont bénéficié de l’évaluation par une équipe mobile de soins palliatifs et 6 d’un questionnement éthique. Dix sont décédées en milieu hospitalier dont 5 dans un service pratiquant les soins palliatifs. L’errance rend difficile le suivi médico-social. La coordination et la formation des intervenants est nécessaire afin d’assurer une prise en charge optimisée. Trois cadres syndromiques ont été identifiés permettant de cibler les actions entreprises. La communication entre les professionnels du champ de la précarité et des soins palliatifs est essentielle pour définir le projet de vie de ces patients.
Cancer is associated with disease-related and treatment-related symptoms. Little is known about the symptom experience of black individuals with advanced cancer especially those with limited financial resources. Therefore, the purpose of this study was to explore the symptom experience of black adults with advanced cancer living in poverty. This qualitative descriptive study focused on the perspectives of the participants experiencing at least two symptoms related to cancer. A purposive sample of 27 individuals receiving care at a public hospital in a southeastern city participated in the study. Semi-structured audiotaped interviews were conducted by two research interviewers. Content analysis was used to develop themes to describe the symptom experience. Two main themes emerged in terms of the participants' symptom experiences: (1) "living in pain," which included the overwhelming experience of pain, both physical and emotional, and (2) "symptoms associated with functioning in everyday life." Participants frequently used the context of activities in their daily lives to explain symptoms, including the effect of symptoms on the activities of eating, moving and doing, and communicating. People with advanced cancer work to negotiate a high frequency of multiple distressful symptoms of severe-to-moderate severity. Information gained from this study can help guide research in symptom science and provide direction for clinicians working with this minority group.
Familiarity with principles of palliative care, supportive care, and palliative oncological treatment is essential for providers caring for cancer patients, though this may be challenging in global communities where resources are limited. Herein, we describe the scope of literature on palliative oncological care curricula for providers in resource-limited settings. A systematic literature review was conducted using PubMed, Embase, Cochrane Library, Web of Science, Cumulative Index to Nursing and Allied Health Literature, Med Ed Portal databases, and gray literature. All available prospective cohort studies, case reports, and narratives published up to July 2017 were eligible for review. Fourteen articles were identified and referenced palliative care education programs in Argentina, Uganda, Kenya, Australia, Germany, the USA, or multiple countries. The most common teaching strategy was lecture-based, followed by mentorship and experiential learning involving role play and simulation. Education topics included core principles of palliative care, pain and symptom management, and communication skills. Two programs included additional topics specific to the underserved or American Indian/Alaskan Native community. Only one program discussed supportive cancer care, and no program reported educational content on resource-stratified decision-making for palliative oncological treatment. Five programs reported positive participant satisfaction, and three programs described objective metrics of increased educational or research activity. There is scant literature on effective curricula for providers treating cancer patients in resource-limited settings. Emphasizing supportive cancer care and palliative oncologic treatments may help address gaps in education; increased outcome reporting may help define the impact of palliative care curriculum within resource-limited communities.