Introduction: This study assessed the feasibility of integrating telehealth-assisted home-based specialist palliative care (TH-SPC) into a rural community setting.
Methods: This was a prospective mixed-methods pilot study conducted in rural Victoria, Australia. Newly engaged adult patients and their caregivers of a community palliative-care service received video consultations with metropolitan-located specialist palliative-care physicians, alongside standard care. Those eligible patients who failed to receive TH-SPC were treated as a control group upon analysis. Data were collected over three months and at 30 days prior to death. Feasibility outcomes included efficiency of process, user satisfaction, clinical outcome and health-care metrics.
Results: A total of 21 patients completed the study, with an average age of 70.4 years and an average survival of 5.8 months. Fourteen patients received TH-SPC, and seven received standard care alone. Patient–caregiver feedback for TH-SPC showed a high level of overall satisfaction. Compared to standard care, the TH-SPC group demonstrated less functional decline from baseline at two weeks (Australia-modified Karnofsky Performance Status: –1.35 vs. –12.30, p = 0.067) and three months (8.48 vs. –10.79, p = 0.04) after the intervention. At 30 days prior to death, functional status remained better in the TH-SPC group, with fewer per capita community palliative-care nursing visits (5.46 vs. 9.32, effect size = 0.7), general practitioner visits (0.13 vs. 3.88, effect size = 1.34) and hospital admissions (0.02 vs. 0.2, effect size = 0.65).
Discussion: TH-SPC was successfully integrated into rural community-based palliative care, with potential benefits in performance status preservation and health-care resource utilisation.
BACKGROUND: One of the poorest countries in the world, Malawi's palliative care system is under-resourced, and one-third of the population is food-insecure.
AIMS: This study describes the lived experience of female palliative care patients, and their caregivers, and aimed to: (1) analyse their physical, spiritual and mental health needs; and (2) analyse best palliative nursing practice for patients at the end of life. An unexpected finding was the impact of food insecurity on the women and their caregivers.
METHODS: We conducted interviews with 26 women who at the end of life and 14 of their caregivers. All were participating in a community palliative care programme offered by an AIDS support organisation in Kasungu, Malawi. We used deductive qualitative analysis to organise identified themes using the four pillars of food security: availability, access, utilisation and stability.
FINDINGS: All study participants experienced challenges with food security.
CONCLUSIONS: We offer policy recommendations for palliative care nurses, and other allied health professionals.
Background: Widespread community engagement in advance care planning (ACP) is needed to overcome barriers to ACP implementation.
Objective: Develop, implement, and evaluate a model for community-based ACP in rural populations with low English language fluency and health care access using lay patient navigators.
Design: A statewide initiative to improve ACP setting/subjects—trained in a group session approach, bilingual patient navigators facilitated 1-hour English and Spanish ACP sessions discussing concerns about choosing a surrogate decision maker and completing an advance directive (AD). Participants received bilingual informational materials, including Frequently Asked Questions, an AD in English or Spanish, and Goal Setting worksheet.
Measurement: Participants completed a program evaluation and 4-item ACP Engagement Survey (ACP-4) postsession.
Results: For 18 months, 74 ACP sessions engaged 1034 participants in urban, rural, and frontier areas of the state; 39% were ethnically diverse, 69% female. A nurse or physician co-facilitated 49% of sessions. Forty-seven percent of participants completed an ACP-4 with 29% planning to name a decision maker in the next 6 months and 21% in the next 30 days; 31% were ready to complete an AD in the next 6 months and 22% in the next 30 days. Evaluations showed 98% were satisfied with sessions. Thematic analysis of interviews with facilitators highlighted barriers to delivering an ACP community-based initiative, strategies used to build community buy-in and engagement, and ways success was measured.
Conclusion: Patient navigators effectively engaged underserved and ethnically diverse rural populations in community-based settings. This model can be adapted to improve ACP in other underserved populations.
BACKGROUND: Pain and symptom management is critical in ensuring quality of life for chronically ill older adults. However, while pain management and palliative care have steadily expanded in recent years, many underserved populations, such as rural older adults, experience barriers in accessing such specialty services, in part due to transportation issues. The purpose of this systematic review is to examine the specific types of transportation-related barriers experienced by rural older adults in accessing pain and palliative care.
METHODS: Studies were searched through the following 10 databases: Abstracts in Social Gerontology, Academic Search Premier, CINAHL, MEDLINE, PsycINFO, SocINDEX with Full Text, Cochrane Database of Systematic Reviews, Nursing & Allied Health Database, Sociological Abstracts, and PubMED. Studies were chosen for initial review if they were written in English, full text, included older adults in the sample, and examined pain/palliative care/hospice, rural areas, and transportation. A total of 174 abstracts were initially screened, 15 articles received full-text reviews and 8 met the inclusion criteria.
RESULTS: Findings of the 8 studies identified transportation-related issues as major access barrier to pain and palliative care among rural older adults: specifically, lack of public transportation; lack of wheelchair accessible vehicles; lack of reliable drivers; high cost of transportation services; poor road conditions; and remoteness to the closest pain and palliative care service providers.
CONCLUSION: Results suggest that rural older adults have unique transportation needs due to the urban-centric location of pain and palliative care services. Implications for practice, policy and research with older adults are discussed.
Background: Options available to Canadians at the end of life increased with the legalization of medical assistance in dying (MAiD). Bill C-14 modified the Canadian Criminal Code allowing individuals who meet very specific criteria to receive a medical intervention to hasten their death. June 2019 marked 3 years since the legislation has changed and while met with favour from most Canadians who believe it will provide enhanced options for quality of life at the end of life, there remains much debate over both its moral implications and practical components. Little is known regarding the Canadian healthcare provider experience with MAiD, in particular in rural and remote parts of the country such as northwestern Ontario.
Objectives: The purpose of this study was to explore physicians' experiences in Northwestern Ontario with MAiD. The geographic location of this study is of particular significance as physicians in rural and remote parts of Canada face unique challenges in the provision of high-quality palliative and end-of-life services. This qualitative research focused on developing a better understanding of physicians' perceptions and practices with MAiD, in particular regarding access, decision-making, provision of service and role clarity.
Methods: The researchers employed an exploratory qualitative research approach, using 1 semi-structured focus group and 18 semi-structured interviews comprising 9 set of questions. Data were collected through audio-taped semi-structured interviews, in person and by telephone.
Findings: Four distinct but interconnected themes emerged from thematic analysis of the transcripts of the focus group and interviews: physician perception of patient awareness, appreciation and understanding of MAiD; challenges providing true choice at end of life; burgeoning relationships between palliative care and MAiD; and physician recommendations.
Conclusion: The results of this study provide a snapshot of the Northwestern physician experiences with MAiD and contribute to the growing body of work exploring these issues on a national scale. MAiD is highlighted as both a rewarding and challenging experience for physicians in Northwestern Ontario in this study.
PURPOSE: To examine differential associations between health literacy (HL) and end-of-life (EOL) care expenditures by rurality.
METHODS: This cross-sectional study included all urban and rural counties in the United States. County-level HL data were estimated using 2010 US Census and 2011 American Community Surveys data; EOL expenditures in 2010 were derived from the Dartmouth Atlas of Health Care database. Hierarchical generalized linear regressions were used to assess associations between HL and EOL care, controlling for county-level characteristics and focusing on rurality (with areas classified as urban, rural micropolitan, or rural noncore).
FINDINGS: Of 3,137 US counties, 100 (3.2%) counties where 7.6 million Americans live had low HL (LHL). Counties with LHL had significantly higher average expenditures in the last 6 months of life and during terminal hospitalization than counties with high HL (HHL) (both P < .001). There was a statistically significant interaction between HL and rurality (P < .001). EOL expenditures were significantly higher in LHL counties than HHL counties in urban areas, while no such relationship appeared in rural areas. Average estimated EOL expenditures among LHL counties decreased by rurality ($16,953, $14,939, and $12,671 for urban, rural micropolitan, and rural noncore areas, respectively), while average estimated expenditures in HHL counties were around $14,000 in each of these areas.
CONCLUSIONS: HL and EOL expenditures were inversely associated with urban America but unrelated to rural areas. Counties with HHL had constant expenditures regardless of rurality. Interventions targeting HL may help reduce EOL expenditures and rural-urban disparities in EOL care.
OBJECTIVES: This study aimed to explore health professional, patient, family, and caregiver perceptions of palliative care, availability of palliative care services to patients across South Dakota, and consistency and quality of palliative care delivery.
METHODS: Six focus groups were conducted over two months. Participants included interprofessional healthcare team members, patients, family members of patients, and caregivers. Individuals with palliative care experiences or interest in palliative care were invited to participate. Recruitment strategies included emails, flyers, and direct contact by members of the Network. Snowball sampling was used to recruit participants.
RESULTS: Forty-six participants included patients, family members, caregivers and interprofessional health care team members. Most participants were Caucasian (93.3%) and female (80%). Six primary themes emerged: Need for guidance toward the development of a holistic statewide palliative care model; Poor conceptual understanding and awareness; Insufficient resources to implement complete care in all South Dakota communities; Disparities in the availability and provision of care services in rural SD communities; Need for relationship and connection with palliative care team; and Secondary effects of palliative care on patients/family/caregivers and interprofessional healthcare team members. Significance of Results: Disproportionate access is a principle problem identified for palliative care in rural South Dakota. Palliative care is poorly understood by providers and recipients of care. Service reach is also tempered by lack of resources and payer reimbursement constraints. A model for palliative care in these rural communities requires concerted attention to their unique needs and design of services suited for the rural residents.
Background: Patients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people’s response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use post-discharge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness.
Methods: Community Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC tele-consult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness.
Discussion: This is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients’ symptoms and care partner burden.
PURPOSE: For individuals with cancer, palliative care improves quality of life, mood, and survival. Rural residents experience limited access to palliative care. In eastern North Carolina, a rural area, little is known about access to inpatient cancer-related palliative care. This study describes access to inpatient palliative care and developed a predictive model of who was most likely to be admitted to an inpatient facility without a palliative care provider.
METHODS: A descriptive, exploratory design was used to examine demographics, clinical variables, and inpatient admissions from 2017 and 2018, in a major regional teaching hospital system that included 8 hospitals (7 rural hospitals). Descriptive statistics and a binary logistic regression were used to analyze data.
FINDINGS: The mean age was 62.2 years (N = 2,161, range: 18-88, SD = 15.52): 49.4% were female, 54% lived in a rural county, and 44.4% were black. The outlying rural hospitals, with no palliative care providers on staff, had 388 admissions (18%). Only gender (P = .0128), county (P < .0001), and age (P < .05) contributed to the logistic model. The predicted probability of being admitted to an inpatient facility with a palliative care provider is higher for younger males living in urban counties. That probability decreases with age regardless of the gender or type of county.
CONCLUSIONS: These findings highlight the limited availability of inpatient palliative care for those with cancer. Women, older adults, and rural residents are more likely to be admitted to 1 of the 7 rural hospitals with no palliative care provider on staff.
BACKGROUND: Despite the advances in End-of-life (EOL) cancer care, disparities remain in the accessibility and utilisation of EOL cancer care resources. Often explained by socio-demographic factors, geographic variation exists in the availability and provision of EOL cancer care services among EOL cancer decedents across urban versus rural settings. This systematic review aims to synthesise mortality follow-back studies on the patterns of EOL cancer care resource use for adults (>18 years) during end-of-life cancer care.
METHODS: Five databases were searched and data analysed using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Inclusion criteria involved; a) original research; b) quantitative studies; c) English language; d) palliative care related service use in adults (>18 years) with any malignancy excluding non-melanoma skin cancers; e) exclusive end of life focus; f) urban-rural focus. Narrative reviews and discussions were excluded.
RESULTS: 24 studies met the inclusion criteria. End-of-life cancer care service utilisation patterns varied by rurality and treatment intent. Rurality was strongly associated with higher rates of Emergency Department (ED) visits and hospitalisations and lower rates of hospice care. The largest inequities between urban and rural health service utilisation patterns were explained by individual level factors including age, gender, proximity to service and survival time from cancer diagnosis.
CONCLUSIONS: Rurality is an important predictor for poorer outcomes in end-of-life cancer care. Findings suggest that addressing the disparities in the urban-rural continuum is critical for efficient and equitable palliative cancer care. Further research is needed to understand barriers to service access and usage to achieve optimal EOL care for all cancer patient populations.
The purpose of this quality improvement project was to evaluate a statewide initiative promoting Advance Care Planning (ACP) to educate and support multidisciplinary ACP educators and provide tools to start ACP conversations in a predominantly rural state of the Upper Midwest. Individual objectives were to (1) motivate people of different professions and backgrounds to support the vision and (2) implement a system to educate and maintain a pipeline of ACP educators in appropriate methodologies to enable ACP in distant communities. The Advance Care Planning: Quality Conversations coalition was formed in 2015 to improve health care across the life span. The Reach-Effectiveness-Adoption-Implementation-Maintenance framework was applied to evaluate the project. Outcome variables were measured before, during, and after program implementation through service statistics and a questionnaire. Participation in the coalition's membership team between September 2015 and September 2019 ranged from 18 to 36 with a median of 27 and mode of 27. At least 20 different professions were represented. The coalition provided funds for educating 9 ACP instructors and 180 facilitators according to the Respecting Choices–First Steps ACP program. The coalition's mission has generated sustained interest for 4 years. Key elements and obstacles to implementing a statewide coalition were identified.
The study objective was to explore the characteristics of rural general practice which exemplify optimal end-of-life (EOL) care from the perspective of people diagnosed with cancer, their informal carers and general practitioners (GPs); and the extent to which consumers perceived that actual EOL care addressed these characteristics. Semi-structured telephone interviews were conducted with six people diagnosed with cancer, three informal carers and four GPs in rural and regional Australia. Using a social constructionist approach, thematic analysis was undertaken. Seven characteristics were perceived to be essential for optimal EOL care: (1) commitment and availability, (2) building of therapeutic relationships, (3) effective communication, (4) psychosocial support, (5) proficient symptom management, (6) care coordination and (7) recognition of the needs of carers. Most GPs consistently addressed these characteristics. Comprehensive EOL care that meets the needs of people dying with cancer is not beyond the resources of rural and regional GPs and communities.
Objective: To ensure that a standardized method of continuous symptom monitoring was available to hospice patients enrolled at our institution.
Patients and Methods: The Palliative/End-of-Life/Assessment/Care Coordination/Evidence-Based Program (PEACE) seeks to enhance the provision of hospice care through symptom control and patient support. We conducted a quality improvement initiative between November 1, 2015, and March 31, 2017, following Define-Measure-Analyze-Improve-Control methodology to improve hospice care at a rural hospice. The gap in our current hospice model was a standardized method of continuous symptom monitoring. We aimed to explore ways in which technology-assisted care coordination could enhance end-of-life and hospice care. We measured continuous symptom assessments through co-developed condition management protocols (CMPs), technology-assisted care pathways (TACPs), nursing visits, length of stay, respite days, and satisfaction survey data from patients, caregivers, and hospice staff. At baseline, no continuous symptom monitoring was being performed. Baseline data for our enrolled population was compared with data from patients who were eligible, but opted out.
Results: We monitored 50 patients using CMP and TACP. The mean ± SD number of skilled nursing visits per patient in the enrolled population compared with those who were eligible but opted out was 13.7±7.6 vs 14.2±10.5, respectively. In response to the survey question, “Because of the overall program, I felt supported and confident at home,” 74% (37 of 50) of patients and caregivers answered, “always.”
Conclusion: PEACE enhanced hospice care through symptom control and patient support through CMP and TACP. PEACE is a unique and feasible care platform for hospice patients, with high patient and caregiver satisfaction.
Context: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts.
Objectives: The objective of this qualitative study was to learn from the experiences of rural hospice nurses caring for children at the end of life using telehealth modalities to inform palliative communication.
Methods: Voice-recorded qualitative interviews with rural hospice nurse telehealth users inquiring on nurse experiences with telehealth. Semantic content analysis was used.
Results: Fifteen hospice nurses representing nine rural hospice agencies were interviewed. Nurses participated in an average of eight telehealth visits in the three-months prior. Nurses were female with mean age 38 years and average 7 years hospice nursing experience. Five themes about telehealth emerged: accessible support, participant inclusion, timely communication, informed and trusted planning, and familiarity fostered. Each theme had both benefits and cautions associated as well as telehealth suggestions. Nurses recommended individualizing communication, pacing content, fostering human connection, and developing relationships even with technology use.
Conclusions: The experiences of nurses who utilize telehealth in their care for children receiving end of life care in rural regions may enable palliative care teams to understand both the benefits and challenges of telehealth use. Nurse insights on telehealth may help palliative care teams better honor the communication needs of patients and families while striving to improve care access.
Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time.
Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data.
Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time.
Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.
Globally, 40 million people need palliative care; about 69% are people over 60 years of age. The highest proportion (78%) of adults are from low- and middle-income countries (LMICs), where palliative care still developing and is primarily limited to urban areas. This integrative review describes strategies used by LMICs to establish palliative care in rural areas. A rigorous integrative review methodology was utilized using four electronic databases (Ovid MEDLINE, Ovid Emcare, Embase classic+Embase and CINAHL). The search terms were: ‘palliative care’, ‘hospice care’, ‘end of life care’, ‘home-based care’, ‘volunteer’, ‘rural’, ‘regional’, ‘remote’ and ‘developing countries’ identified by the United Nations (UN) as ‘Africa’, ‘Sub-Saharan Africa’, ‘low-income’ and ‘middle- income countries’. Thirty papers published in English from 1990 to 2019 were included. Papers were appraised for quality and extracted data subjected to analysis using a public health model (policy, drug availability, education and implementation) as a framework to describe strategies for establishing palliative care in rural areas. The methodological quality of the reviewed papers was low, with 7 of the 30 being simple programme descriptions. Despite the inclusion of palliative care in national health policy in some countries, implementation in the community was often reliant on advocacy and financial support from non-government organizations. Networking to coordinate care and medication availability near-patient homes were essential features of implementation. Training, role play, education and mentorship were strategies used to support health providers and volunteers. Home- and community-based palliative care services for rural LMICs communities may best be delivered using a networked service among health professionals, community volunteers, religious leaders and technology.
Caring for persons at the end of life has dramatically changed in the last 20 years. Improved chronic illness management and aggressive life-sustaining measures for once-fatal illnesses have significantly increased longevity. People with life-limiting illnesses and their families are asked to make complex and difficult decisions about end-of-life, palliative, and hospice care. The purpose of this study was to discover and describe the culture care expressions, patterns, and practices influencing rural Appalachian families making decisions at the end of life. The qualitative, ethnonursing research method was used to analyze data from 25 interviews. The 4 themes discovered provide insights that could help improve this underserved population's access to palliative and hospice care, which in turn could help them experience a dignified death. Recommendations for health care providers could help reduce rural Appalachians' health disparities and promote meaningful, culturally congruent end-of-life care.
Purpose: St. Gabriel’s Hospital (SGH) in Namitete, Malawi, has a Home-Based Palliative Care program of 60 community health workers (CHWs) to support rehabilitation work. Over 5 years, these CHWs received support through annual rehabilitation training programs. The study explores the nature of the CHWs’ roles and factors affecting the program’s sustainability.
Subjects: Participants were home-based palliative care CHWs at SGH (n = 60).
Methods: This is a mixed-methods study including qualitative and quantitative data and analysis methods. Data were collected from training surveys, focus group discussion material, field and home-visit observation checklists.
Results: Results showed that 59% of the CHWs traveled = 5 km to visit patients. 100% of the 57 patients had participation restrictions. Following trainings, 93.3% of the CHWs felt more prepared. Qualitative analysis revealed four themes: (1) Empowerment and Motivation; (2) Barriers to care; (3) Communication and Network; (4) Scope of practice and Self-Perception of impact.
Conclusion: This study illuminated important aspects of the CHWs’ work: empowerment through training, burden of travel, and altruism. Future studies could include impact of CHW-to-caregiver training, patient outcome measures following care, and future training needs.
Significance: This study provides a unique perspective of the successes, barriers, and motivations of home-based CHWs in Malawi.
Rose presented for her first visit to our rural oncology clinic with systolic blood pressure of 220 mm Hg and diastolic 110 mm Hg. She waved my concerns aside with an impatient swipe of her arm. She was there, she wanted me to know, only to talk about her lung cancer.
She cast her steely gaze on me. Did I have her records? I assured her that I did, and that I had done my homework. The records told me that she had first been seen at the tertiary center 2 hours away, where they had established the diagnosis. She had then been referred to me at our rural site to start treatment closer to her home. The disease was locally advanced, stage III, and inoperable. The tertiary center recommended concurrent chemotherapy with radiation or enrollment in a clinical trial.
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Background : Despite significant developments in palliative care in recent decades, we still find important differences in access to and delivery of care in rural Norway.
Objective : The aim of this study was to explore what healthcare professionals consider necessary to provide equality in care for palliative patients in rural areas.
Methods : A qualitative approach with focus group discussions and individual interviews with 52 health professionals was used, starting with 5 uniprofessional focus groups of general practitioners and nurses/cancer nurses, followed by 5 interprofessional groups and 6 individual interviews. Interview transcripts were analyzed thematically.
Results : We found local variations in organization, competence and access to palliative care, and challenging geographical conditions. It was essential to be proactive, flexible and willing to go the extra mile, but this may conceal the need for a stronger focus on competence and organization of palliative care. Access to written guidelines and practical tools was important, as was forming palliative teams for particular situations.
Conclusions : palliative care needs strengthening in rural areas, and increased competence for all healthcare professionals is vital to increase equality in care. Geographical conditions require locally adapted solutions. Access to guidelines and interprofessional collaboration are essential.
Implications for Practice : Rural palliative care needs in Norway are improving, as exemplified by at least 1 cancer nurse assigned to each local authority, and access to guidelines and palliative tools and interprofessional collaboration.