Rural Hospice Research Articles

TeleHospice: A Community-Engaged Model for Utilizing Mobile Tablets to Enhance Rural Hospice Care.

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. 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. 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. 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.

Telehospice: Implementation lessons from rural hospice care with mobile tablets.

6546 Background: In underserved rural communities, hospice personnel often travel great distances to reach patients, resulting in challenges to maintain access, quality, cost-effectiveness and safety. To address these disparities, the University of Kansas Medical Center piloted the country’s first TeleHospice (TH) service in 1998. Barriers such as technology limitations, costs and attitudes towards technology limited adoption (Cook et al., 2001). An updated academic-community project utilizes secure mobile videoconferencing to support TH services in Kansas’ frontier communities. Methods: Leveraging lessons learned from the early work, a secure cloud-based videoconferencing solution was chosen for ease of use. To maximize limited resources, the selection of hospice partners was guided by Gustafson et al.’s (2003) Organizational Change Manager, which also informed implementation gaps. The academic team partnered with Hospice Services, Inc., a leader in rural hospice care, providing services to 16 Kansas counties. Results: From February 2016 through January 2017, 116 TH encounters occurred, encompassing 707 attendees over 7,462 minutes. The most common TH uses to date have been: administrative (e.g., connecting hospice staff across 16 counties); professional-to-professional (e.g., connecting hospice nurses at homes to additional TH professionals); and family support (e.g., connecting adult children with loved ones). Initial use of videoconferencing for administrative purposes developed a comfort level in using it for clinical and family support purposes. For staff meetings alone, the hospice has saved approximately $2,500/month in travel, with TH staff noting increased morale driven by increased team communication. Conclusions: Compared with early work, technology advances and a community-centered approach have increased TH adoption. With decreasing budgets as well as rural hospice closures, innovative, cost-effective and community-driven approaches such as TH are needed to decrease disparities. As dissemination occurs in national hospice organizations, continued research is needed to understand best fit within frontier hospices, to inform future urban applications and to address reimbursement.

Lean, Green and Healthy: Landscape and Health

The Scandinavian firm CF Møller has been designing healthcare buildings to high acclaim since 1931. Guided by humanistic values from the outset, they have developed three design principles that they apply to every commission, to favour patients' empowerment in the healing process. Julian Weyer, one of the practice's current partners, sets out these principles and explains how they have shaped several of their recent projects in Denmark: from a rural hospice, to a city‐integrated care centre, to the country's largest hospital, townlike in scale and arrangement.

Strengths of Parents Caring for Their Children in Hospice/Palliative Care

Little is known about the strengths of parents caring for their child who is receiving hospice/palliative care in Kenya. The purposes of this study were (1) to identify the sources of strength parent caregivers of Kenya turn to when their child is receiving palliative/hospice care in the home, (2) t

University-Community-Hospice Partnership to Address Organizational Barriers to Cultural Competence.

Research documents a lack of access to, utilization of, and satisfaction with hospice care for African Americans. Models for culturally competent hospice services have been developed but are not in general use. Major organizational barriers include (1) lack of funding/budgeting for additional staff for community outreach, (2) lack of applications from culturally diverse professionals, (3) lack of funding/budgeting for additional staff for development of culturally competent services, (4) lack of knowledge about diverse cultures, and (5) lack of awareness of which cultural groups are not being served. A participatory action research project addressed these organizational barriers through a multicultural social work student field placement in 1 rural hospice. The effectiveness of the student interventions was evaluated, including addressing organizational barriers, cultural competence training of staff, and community outreach. Results indicated that students can provide a valuable service in addressing organizational barriers through a hospice field placement.

Rural Hospice in Kenya Provides Compassionate Palliative Care to Hundreds Each Year

Kenya is 1 of 9 sub-Saharan African countries with a population of more than 39 000 000 and a life expectancy of 58 years (Centers for Disease Control 2011). Human immunodeficiency virus/acquired immunodeficiency syndrome lower respiratory infections diarrheal diseases tuberculosis malaria and cancer are common causes of death in Kenya. To assist in meeting the needs of those with serious life-threatening illnesses 32 hospices and palliative care facilities have been built throughout Kenya to support patients and families (Kenya Hospices and Palliative Care Association 2013). In Chebaiywa Village located in Western Kenya the 26-bed Kimbilio Hospice (Kiswahili for refuge) was built in 2011 to assist the most vulnerable in the area. The purpose of this article is to describe how Kimbilio Hospice started the impact it has in the community and how it works with local and national hospitals and organizations to improve care throughout Kenya.

Patient safety incidents in hospice care: observations from interdisciplinary case conferences.

In the home hospice environment, issues arise every day presenting challenges to the safety, care, and quality of the dying experience. The literature pertaining to the safety challenges in this environment is limited. The study explored two research questions; 1) What types of patient safety incidents occur in the home hospice setting? 2) How many of these incidents are recognized by the hospice staff and/or the patient or caregiver as a patient safety incident? Video-recordings of hospice interdisciplinary team case conferences were reviewed and coded for patient safety incidents. Patient safety incidents were defined as any event or circumstance that could have resulted or did result in unnecessary harm to the patient or caregiver, or that could have resulted or did result in a negative impact on the quality of the dying experience for the patient. Codes for categories of patient safety incidents were based on the International Classification for Patient Safety. The setting for the study included two rural hospice programs in one Midwestern state in the United States. One hospice team had two separately functioning teams, the second hospice had three teams. 54 video-recordings were reviewed and coded. Patient safety incidents were identified that involved issues in clinical process, medications, falls, family or caregiving, procedural problems, documentation, psychosocial issues, administrative challenges and accidents. This study distinguishes categories of patient safety events that occur in home hospice care. Although the scope and definition of potential patient safety incidents in hospice is unique, the events observed in this study are similar to those observed with in other settings. This study identifies an operating definition and a potential classification for further research on patient safety incidents in hospice. Further research and consensus building of the definition of patient safety incidents and patient safety incidents in this setting is recommended.

Trend of urban-rural disparities in hospice utilization in Taiwan.

AimsThe palliative care has spread rapidly worldwide in the recent two decades. The development of hospice services in rural areas usually lags behind that in urban areas. The aim of our study was to investigate whether the urban-rural disparity widens in a country with a hospital-based hospice system.MethodsFrom the nationwide claims database within the National Health Insurance in Taiwan, admissions to hospices from 2000 to 2006 were identified. Hospices and patients in each year were analyzed according to geographic location and residence.ResultsA total of 26,292 cancer patients had been admitted to hospices. The proportion of rural patients to all patients increased with time from 17.8% in 2000 to 25.7% in 2006. Although the numbers of beds and the utilizations in both urban and rural hospices expanded rapidly, the increasing trend in rural areas was more marked than that in urban areas. However, still two-thirds (898/1,357) of rural patients were admitted to urban hospices in 2006.ConclusionsThe gap of hospice utilizations between urban and rural areas in Taiwan did not widen with time. There was room for improvement in sufficient supply of rural hospices or efficient referral of rural patients.

Hospice Patient Evacuation

This study was conducted to provide lessons learned from the experience of a small, rural hospice care organization to an actual crisis that required evacuation of the facility. A process improvement framework using the emergency response certification guidelines was used to first provide details of the incident, second analyze the effectiveness of disaster planning and response in response to an actual crisis, and third discuss the post-event review, lessons learned, and process improvement. This case study revealed 5 emerging themes-disaster can happen at the most inopportune times, facilities should focus on the most likely hazards, written agreements are needed even in small tight-knit communities, redundancy of resources is needed, and disaster planning and response is a process that should be continually improved.

Lessons from Rural Volunteer Hospices: Thinking Outside the Medicare Box (411-C)

1.Discuss creative approaches to providing hospice and palliative care to under-served populations.2.Describe the volunteer hospice model.3.Discuss the current state of rural hospices in California. Background. Once the only form of hospice in the United States, volunteer hospices have, since the Medicare hospice benefits, become a small minority. Little is known about their current model of care. Research objectives. Describe the current structure and practice of volunteer hospices in California. Methods. Qualitative, semi-structured, key-informant interviews of four volunteer hospice programs in a rural county in California Results. Volunteer hospices have developed innovative ways to provide comprehensive end-of-life care without Medicare hospice benefits, involving community partnerships, efficient resource utilization, and funding support from their community. Since volunteer hospices in the study were prohibited from providing skilled nursing, they focused on care-coordination; education and training of caregivers, volunteers, and the community; and provision of spiritual and bereavement care. Their utilization of existing nursing and pharmacy resources and community support allowed them to successfully provide care to rural, under-served, and low-resource areas. However, volunteer hospices felt alienated from the larger hospice community. Conclusion. The volunteer hospice model, without a reliance on Medicare hospice benefits, offers creative approaches to providing hospice and palliative care to under-served populations, such as the under-insured and those in nursing homes and rural areas. More engagement of volunteer hospices is needed in research and in national organizations. Implications for research, policy, or practice. Medicare-certified hospices can use the same approaches currently used by volunteer hospices to provide care to under-served populations not covered by or inadequately covered by their insurances. Structure and Processes of Care

Serving Families on the Frontline: Challenges and Creative Solutions in Rural Hospice Social Work

Focus on the social service and health care needs of rural dwellers has emerged due to changing demographics and advocacy efforts. All rural health providers are faced with numerous unique challenges. As a valuable part of hospice teams, social workers are well equipped to have an integral role in understanding and addressing the specific challenges in end-of-life care in rural communities. In this study, a Web-based survey was completed by 339 hospice social workers spanning 40 states in the United States. Both quantitative and qualitative methods and data analysis strategies were utilized. The results reveal environmental and cultural challenges impacting social work practice. The results also unveil solutions and suggestions for addressing challenges such as creative use of resources and increased collaboration within the local resident, health care, and social work communities. Implications include potential strategies for enhanced social work practice in rural areas, yielding a quality end-of-life care for individuals and families.

It Takes a Whole Community: The contribution of Rural Hospice Volunteers to Whole-Person Palliative Care

Although volunteers are widely acknowledged as important members of the palliative care team, their unique contribution to whole-person care has not been well documented or theorized, especially in rural communities. We conducted a focused ethnography in a small rural community, asking key community informants about their understanding of the role of hospice volunteers with dying people and their families. Our results show that these volunteers inhabit a unique third culture of care that fuses elements of formal care with the informal visiting of friends and neighbours. Their role is shaped to a community context where dying is not a private medical event, but rather a whole-person-in-community event, and where care is offered as a natural expression of the interdependence and reciprocity that characterizes rural community life. Our results are a reminder that it takes an entire community to care for the dying, and that hospice volunteers are a crucial link in the network of care that allows people to die with dignity and quality of life.

The Healing Story: Therapeutic Applications of Narrative Medicine in Primary Palliative Care (317)

1.Define and describe narrative theory and epistemology: the story way of knowing.2.Demonstrate the complementary nature of a narrative healthcare model to the biomedical model currently used in both acute and end-of-life settings.3.Discuss the framework for a narrative approach to hospice and palliative care based on the presenters' 15 years of experience and an ongoing 4-year research project with one patient using a grounded qualitative methodology. “I could feel the angels during the night come and scrape that dirt back off my coffin and pull my coffin back out of that hole” (T. Strickland, 2008). Although palliative care is an interdisciplinary model that strives for whole person care, the actual delivery of that care remains framed in a biomedical and economic system that emphasizes the reduction of patients and families to a list of problems to be distributed and solved in a nonambiguous manner. However, much of the experience of persons with chronic, progressive, incurable illness takes place outside the realm of biomedicine (note that suffering and healing have no DSM and CPT codes). And the interventions that are difficult to quantify (eg, pastoral care, psychosocial counseling, and vigiling) are often undervalued in a data-driven team care model. Narrative medicine is a relationship-centered model of care that expands technologically focused biomedicine to encompass psychosocial, cultural, and existential dimensions. By harnessing the power of story, multiple diagnostic and therapeutic options that are particularly suitable to patients with incurable illness emerge. Narrative medicine situates the physical condition in the larger context of a person's life, thus creating a space in which the patient and the caregivers can consider the role illness plays in their individual and communal life story, a space, we believe, in which physical pain, exacerbated by existential suffering, can be mitigated. Theresa Strickland's story-changing impact on a small, rural hospice began as a desperate attempt to reduce the number of frantic phone calls by a patient described as both deeply troubled and troublesome, and evolved into a 4-year qualitative study. Video and transcript excerpts will be used to demonstrate her remarkable and eloquent transition from multidimensional suffering to meaning. Specific listening skills helpful in clarifying layers of meaning, such as attending to character, conflict, tone, pace and metaphor, will be illustrated. The presentation will include theory, research, and practice in support of a narrative medicine framework that complements the biomedical model and enhances contemporary care. All Domains

A Survey of Hospices' Use of Complementary Therapy

As people live longer with chronic illnesses, the need for hospice services will increase. Complementary therapies have been shown to increase ease, relieve pain, and improve quality of life; all relevant for people with chronic illness at the end of their lives. The first aim of this study was to identify complementary therapy services available to, and provided for, clients receiving hospice care in Nevada and Montana. The second aim was to identify differences in those therapies for urban and rural hospice clients. Using a descriptive survey design, data were collected from surveys sent to all hospice administrators in Nevada and Montana (N=54). A 50% (n=27) response rate was obtained. Most (70.4%, n=19) of the participating hospices offered complementary therapy; slightly more than half (52.9%, n=9) provided the services for less than 25% of their clients. No significant differences were found between rural and urban hospices.

Are Rural Hospices at a Financial Disadvantage? Evidence from California

Concerns have been voiced about financial pressures faced by rural hospices, because of possible implications for hospice access in rural areas. To assess whether financial performance differs between existing urban and rural hospices, we used the 2003 California Office of Statewide Health Planning and Development survey to compare revenues, costs, and profitability (with and without charitable donations). We adjusted for factors related to financial performance, including agency size, years in operation, profit status, whether hospices were freestanding or chain-, home-health-, or hospital-based, and the proportion of patients by insurance type and referral source, race/ethnicity, and diagnosis. One hundred forty-four (91%) hospices were urban, and 14 (9%) were rural. Mean values per patient for total revenue, total cost, and post-tax profit were $7203, $7440 and −$256, respectively, for urban hospices and $6726, $6274 and $452, respectively, for rural hospices. Compared with urban hospices, rural hospices were at least as profitable per patient-day (+$33, P = 0.15). They were significantly more profitable (+$47, P = 0.05) when charitable donations were excluded. In summary, we found that in California, rural hospices fared no worse financially than urban hospices. These counterintuitive findings underscore the need to examine urban-rural hospice financial differences using a national sample.

Barriers to Pain Management: Caregiver Perceptions and Pain Talk by Hospice Interdisciplinary Teams

As patients are cared for in their homes by family caregivers, several challenges arise in effective pain and symptom management. Despite hospice's reputation as the gold standard for terminal care, there is still a need to improve pain management practices, including challenges that caregivers face, related to pain assessment, reluctance and fear of administering medication, noncompliance with pain medicine regimens, and hesitance to report pain. The hospice philosophy of care promotes service for both patients and their family by an interdisciplinary team, and total pain management is a goal of this care. The aim of this control phase of a larger National Cancer Institute-funded mixed methods study was to understand the current practice of hospice assessment and collaboration on informal caregiver issues related to pain management. This study of 30 hospice caregiver–patient dyads from one rural hospice found that 87% of caregivers indicated concern with at least one question on the Caregiver Pain Medicine Questionnaire. Interdisciplinary team discussions for 23 of the dyads were recorded over nine months for a total of 86 sessions. Although caregiver concerns were identified with the Caregiver Pain Medicine Questionnaire by the research team, there was only one discussion of caregiver pain-related concerns during the hospice team meeting. This despite the finding that 38% of the time involved in a patient discussion is spent on pain-related talk. These findings indicate an opportunity for improvement by hospice teams through focusing on caregiver assessment and intervention.

Providing hospice care in rural areas: Challenges and strategies

Hospices in rural settings face challenges in the provision of hospice care as a result of their location and the size of their service area population. To ascertain the challenges that hospices face in serving rural communities, researchers conducted in-depth case studies of four different models of hospice care in rural areas. The authors describe strategies used by the case study hospices and recommend policies that could increase access to hospice care for rural Medicare beneficiaries and other rural residents. National initiatives to improve end-of-life care need to consider the special challenges faced by rural hospices.

Depression in Rural Hospice Family Caregivers

Informal, family caregivers assume an overwhelming responsibility to care for the dying in the home. Although not a long term situation, the outcomes for family hospice caregivers often have negative consequences with minimal mental health resources available in rural settings. Diagnosis and treatment of depression in caregiving has been underdiagnosed. Few studies have identified depression and treatment specifically in hospice family caregivers. The purpose of this study was to determine if informal, hospice, family caregivers in rural settings were depressed and if so, were the caregivers receiving treatment for depression, either by conventional or non-conventional interventions. The descriptive study included 30 hospice family caregivers who reported on symptoms of depression. Forty percent of the hospice caregivers were depressed with only 17% receiving treatment for depression. Future studies should include exploring interventions and outcomes of depression to improve rural health care in caregivers. Key Words: Rural, Hospice, Caregiver, Depression, Conventional Treatment, Non-conventional treatment

Providing care at the end of life: do Medicare rules impede good care?

Providing care at the end of life: do Medicare rules impede good care?

Factors associated with length of stay in a mid-sized, urban hospice

A recent study by Frantz et al. investigated the relationship between length of stay (LOS) and several factors in a small, rural hospice and found significant differences in LOS by primary physician specialty, referral source, and diagnosis (American Journal of Hospice & Palliative Care, March/April 1999). The purpose of the present study was to replicate and extend the Frantz et al. study in a midsized, urban hospice setting and to examine the relationship of LOS with additional variables, such as living status, discharge status, race, and religion. Significant differences in LOS by gender, diagnosis, physician specialty, referral source, type of insurance, living status, and discharge status were found. No significant differences in LOS were found by race, religion, and place of death. Results are interpreted in the light of previous research findings regarding LOS and in the context of the sample size. Strategies are suggested for increasing patients' LOS.