Home Based Palliative Care

Telehealth technologies can enhance patients' and their families' access to high-quality resources in home-based palliative care. Nurses are deeply involved in delivering telehealth in home-based palliative care. However, no previous integrative systematic reviews have synthesized evidence on nurses' roles, facilitators, and barriers to implementing nurse-delivered telehealth in home-based palliative care. This integrative systematic review aimed to provide a comprehensive understanding of the roles of nurses and the multilevel facilitators and barriers to implementing nurse-delivered telehealth in home-based palliative care, which could inform future policy development, research, and clinical practice. This integrative systematic review was conducted using Joanna Briggs Institute methodological guidance. We followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines. We systematically searched articles published from January 1, 2014, to May 2024 in PubMed, Embase, Web of Science, CINAHL, and Cochrane Library. We included English-language; peer-reviewed; original; and qualitative, quantitative, and mixed methods studies that centered on nurse-delivered telehealth in home-based palliative care. We used the Mixed Methods Appraisal Tool to assess the quality of the included articles. Furthermore, 3 authors independently assessed eligibility, extracted data, and assessed the quality of articles. The entities to extract were identified by research questions of interest regardless of the type of study. We applied a convergent synthesis approach to integrate quantitative and qualitative data. Guided by the updated Consolidated Framework for Implementation Research (CFIR) 2.0, we synthesized the facilitators and barriers to implementing nurse-delivered telehealth in home-based palliative care. This integrative systematic review identified 4819 unique articles, including 34 papers encompassing 29 unique primary research studies. Innovations were mainly delivered by nurses (n=8) and nurse-involved multiprofessional teams (n=18). The roles of nurses in telehealth home-based palliative care involve palliative care nurses, community nurses, nurse coordinators, nurse coaches or nurse navigators, and nurse case managers. Guided by CFIR 2.0, facilitators and barriers to implementing nurse-delivered, telehealth, home-based palliative care were identified to 6 implementation levels and 20 constructs. The key facilitators included the COVID-19 pandemic, cost avoidance to the health care system, engagement of patients and their family caregivers, and so on. The barriers included a lack of reimbursement and payment mechanisms, technical problems, insufficiently trained health care providers, and so on. This integrative systematic review synthesizes evidence on nurses' evolving roles in telehealth home-based palliative care and identifies multilevel facilitators and barriers to nurse-delivered, home-based palliative care implementation. With the empowerment of telehealth technologies, nurses could establish a stronger professional identity and develop leadership in home-based palliative care. Nurses should leverage influence to promote nursing practice, clinical management, and policy support in the implementation of telehealth home-based palliative care. PROSPERO CRD42024541038; https://www.crd.york.ac.uk/PROSPERO/view/CRD42024541038.

PC-FACS

Cancer remains a leading cause of mortality globally, with the increasing cancer burden in both developed and developing countries, including India. Palliative care, which focuses on alleviating the symptoms and improving the quality of life for patients, plays a crucial role in cancer management. Despite its significance, the integration of palliative care into cancer treatment in India faces numerous challenges, particularly in rural areas where healthcare access is limited.This study aims to examine the role of palliative care in the comprehensive management of cancer patients, particularly in India. It seeks to explore the specific needs of elderly cancer patients, assess common barriers to effective palliative care, and evaluate the impact of home-based palliative care models in improving patient outcomes.Data was collected through a combination of literature review and patient surveys, focusing on cancer care and palliative needs in India. Assessment tools such as the Edmonton Symptom Assessment Scale (ESAS) and the Palliative Performance Scale (PPS) were employed to evaluate symptom burden and prognosis. The study also analysed operational strategies for implementing home-based palliative care and the role of multidisciplinary teams in enhancing care delivery.The study found that palliative care significantly improves the quality of life for cancer patients by addressing their physical, emotional, and social needs. Home-based palliative care emerged as an effective model, particularly for patients in rural areas, where access to specialised healthcare is limited. Challenges such as a lack of trained personnel, inadequate awareness of palliative care, and logistical difficulties in rural settings were highlighted. The use of assessment tools such as ESAS and PPS helped in better symptom management and tailoring care to individual needs.Palliative care plays a critical role in the holistic management of cancer patients, particularly in resource-limited settings like India. The study underscores the need for more widespread integration of palliative care into the healthcare system, with a focus on home-based care and interdisciplinary collaboration. Increased awareness, training, and policy support are essential for improving access to and the quality of palliative care services, enhancing the well-being of cancer patients across the country.

Despite two decades of palliative care services, there remains numerous barriers to patient and caregiver use of palliative care. For many years, policymakers believed lack of funding for palliative care was the primary obstacle to accessing palliative care services. In 2017, we undertook a randomized controlled trial to test the effectiveness of a home-based palliative care (HBPC) program within accountable care organizations and in partnership with an insurance company that covered the cost of HBPC. After 20 months, we had recruited just 28 patients. This symposium will: (1) describe outcomes from various approaches undertaken to engage primary care physicians and recruit patients and their caregivers into this trial; (2) present barriers to HBPC referral identified from a qualitative study of primary care physicians; (3) present findings from a qualitative study of patient- and caregiver-identified barriers to HBPC; (4) describe physician and patient barriers to research participation; and (5) discuss implications of these findings for researchers and healthcare providers. Information presented in this symposium will inform researchers and policy makers about challenges and facilitators to recruiting patients, caregivers, and physicians to participate in research studies as well as inform healthcare practitioners of potential obstacles to increasing patient access to HBPC.

The COVID-19 pandemic disrupted palliative care globally, but its impact on home-based palliative care (HBPC) within universal healthcare systems, particularly in Asian contexts, remains understudied. Taiwan's National Health Insurance system supports a well-established HBPC program. This background offers a unique lens to examine how interdisciplinary teams adapted HBPC delivery during different pandemic phases. This qualitative study used telephone-based semi-structured interviews with 14 HBPC providers from two medical centers: one in a rural area and one in an urban area. Transcripts were analyzed using inductive thematic analysis. The study design and reporting were guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). Four themes related to the impact of the COVID-19 pandemic on the delivery of HBPC were identified: (1) variation in impacts across time, (2) divergent views of the impact on the uptake of HBPC, (3) difficulties in providing adequate care under restrictions, and (4) disrupted care coordination. Despite Taiwan's well-established palliative care programs, HBPC delivery faced ethical, clinical, and coordination challenges during the pandemic. This experience reveals an urgent need to strengthen virtual care infrastructure, establish clearer interdisciplinary coordination protocols, and provide sustained support for caregivers. These lessons should inform future public health preparedness strategies to ensure that infection control measures do not come at the expense of holistic, patient- and family-centered palliative care.

Bridging the gap and developing a home-based palliative care model for cancer patients

InstitutionRoyal Melbourne Hospital – Parkville, Victoria, AustraliaBackgroundAlthough population surveys suggest that 60–70% of Australians would prefer to die at home, only 14% of them achieve this. This is comparatively low...

Purpose of ReviewTo summarize key recent evidence regarding the impact of Home-Based Palliative Care (HBPalC) and to highlight opportunities for future study.Recent FindingsHBPalC is cost effective and benefits patients and caregivers across the health care continuum.SummaryHigh-quality data support the cost effectiveness of HBPalC. A growing literature base supports the benefits of HBPalC for patients, families, and informal caregivers by alleviating symptoms, reducing unwanted hospitalizations, and offering support at the end of life. Numerous innovative HBPalC models exist, but there is a lack of high-quality evidence comparing specific models across subpopulations. Our wide literature search captured no research regarding HBPalC for underserved populations. Further research will also be necessary to guide quality standards for HBPalC.

BackgroundMost French people (71%) would like to die at home, but only one out of four actually do. While the difficulties inherent in the practice of home-based palliative care are well described, few studies highlight the resources currently used by general practitioners (GPs) in real life. We have therefore sought to highlight the resources actually used by GPs providing home-based palliative care.MethodsTwenty-one GPs of different ages and practice patterns agreed to participate to this qualitative study based upon semi-structured interviews. They were recruited according to a purposive sampling. Transcripts analysis was based upon General Inductive Analysis.ResultsThe resources highlighted have been classified into two main categories according to whether they were internal or external to the GPs. The internal resources raised included the doctor’s practical experience and continuous medical education, personal history, work time organization and a tacit moral contract related to the referring GP’s position. External resources included resource personnel, regional assistance platforms and health facilities, legislation.ConclusionThis study provides a simple list that is easy to share and pragmatic solutions for GPs and policymakers. Home-based palliative care practice can simultaneously be burdensome and yet a fulfilling, meaningful activity, depending on self-efficacy and professional exhaustion (burnout), perhaps to a greater extent than on medical knowledge. Home-based palliative care promotion is a matter of social responsibility. The availability of multidisciplinary teams such as regional assistance platforms and Hospitalization at Home is particularly important for the management of palliative care. Policymakers should consolidate these specific resources out of hospitals, in community settings where the patients wish to end their life.

United States: Overview of Cancer Pain and Palliative Care

Purpose: To examine differences in site of death and costs of services by primary diagnosis for patients receiving home-based palliative care as compared to usual care at the end of life verity of illness, service use, and site of death. Design and Methods: A nonequivalent group design was employed with 298 terminally ill patients diagnosed with cancer, CHF, or COPD enrolled. The treatment group received an interdisciplinary home-based palliative care program and the comparison group received usual Kaiser Permanente services. Data collected included patient demographics, se- Results: Among all diseases, patients enrolled in palliative care were more likely to die at home. Enrollment in palliative care was significant associated with cost reductions for patients with cancer, COPD, and CHF. No significant difference was found between diagnostic groups in terms of magnitude of cost savings. Implications: Provision of interdisciplinary home-based palliative care at end of life can effectively increase the likelihood of dying at home for patients with CHF, COPD, and cancer while realizing significant COSt savings.

Background: Prospectively tracking errors can improve patient safety but little is known about how to successfully implement error reporting in a home-based palliative care context. Aim: Explore the feasibility of implementing an error reporting system in a home-based palliative care program in Toronto, Canada, and describe the possible factors that may influence uptake. Design: A convergent mixed-methods approach was used. Participants prospectively documented errors using a novel reporting tool and completed monthly surveys. Following the reporting period, we conducted a semi-structured interview exploring participants’ experiences and perceived factors influencing reporting behaviors. Error, survey, and interview data were analyzed separately, then integrated for comparison. Setting and participants: Thirteen palliative care physicians from a single home-based palliative care organization in Toronto, Canada anonymously reported errors between October 2021 and September 2022. Of these, six participated in the exit interview. Results: Participants reported 195 errors; one-third (n = 65) involved internal staff or systems. Three themes describe the factors impacting the likelihood of reporting errors: (1) High levels of cognitive burden decreases the likelihood of error reporting; (2) Framing errors as opportunities to learn rather than reason for punishment improves likelihood of error reporting; (3) Knowing that error data will improve patient safety motivates individuals to report errors. Conclusions: Physicians are amenable to error reporting activities so long as data is used to improve patient safety. The collaborative nature of care in a home-based palliative care context may present unique challenges to translating error reporting to improved patient safety.

ED02.05 Palliative Care in Iran

Background: Due to the COVID-19 pandemic, many community palliative healthcare providers shifted from providing care in a patient’s home to providing almost exclusively virtual palliative care, or a combination of in-person and virtual care. Research on virtual palliative care is thus needed to provide evidence-based recommendations aiming to enhance the delivery of palliative care during and beyond the pandemic. Aim: To explore the experiences and perceptions of community palliative care providers, patients and caregivers who delivered or received virtual palliative care as a component of home-based palliative care during the COVID-19 pandemic. Design: Qualitative study using phone and video-based semi-structured interviews. Data were analyzed using thematic analysis. Setting/participants: A total of 37 participants, including community palliative care patients/caregivers (n = 19) and healthcare providers (n = 18) recruited from sites in Ottawa and Toronto, Ontario, Canada. Results: Overall, participants preferred in-person palliative care compared to virtual care, but suggested virtual care could be a useful supplement to in-person care. The findings are presented in three main themes: (1) Impact of COVID-19 pandemic on community palliative care services; (2) Factors influencing transition from exclusively virtual model of care back to a blended model of care; and (3) Recommended uses and implementation of virtual palliative care Conclusions: Incorporating virtual palliative care into healthcare provider practice models (blended care models) may be the ideal model of care and standard practice moving forward beyond the COVID-19 pandemic, which has important implications toward organization and delivery of community palliative care services and funding of healthcare providers.

Recruitment and retention are common challenges in clinical trials, particularly with older adults and their caregivers who often benefit from palliative care but have significant strain from caregiving. In recent years, there has been an expansion in home-based palliative care programs, especially for patients with dementia. Because these programs often rely on physicians or advanced practice nurses, they are quite costly and may be difficult to staff due to workforce shortages. We created a novel program of home-based palliative care for patients with advanced dementia and their families, which centers around a community health worker, a social worker, and a nurse. We report on challenges our trial encountered and corresponding solutions. We enrolled 30 patients and their 30 caregivers in our pilot trial of home-based palliative care. We found two significant barriers to enrollment: (1) the electronic health record was insufficient to determine the severity of patients' dementia; and (2) rates of follow-up survey completion were low, with completion rates at 6 months between 14 and 44%. We created an iterative training process to determine dementia severity from electronic health records and applied person-centered approaches to improve survey completion. Electronic health records are not set up to include discrete fields for dementia severity, which makes enrollment of older adults with dementia in a clinical trial challenging. The strain of caring for a loved one with advanced dementia may also make participation in health-services research difficult for patients and their families. Novel approaches have the potential to counteract these challenges, improve recruitment and retention, and ultimately improve care for people with dementia and their caregivers.