Home-Based Palliative Care Study

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.

BackgroundHome-based care is a fundamental component of the Kerala model of palliative care, which has received global recognition. The study explores the experiences of palliative care providers caring for a vulnerable community of patients. Findings may assist in identifying gaps and replicating Kerala’s palliative care model in other settings.MethodsThis descriptive qualitative study was conducted among palliative care providers (PCPs) and other stakeholders working with the Pain and Palliative Care Project of the National Health Mission (NHM), Thiruvananthapuram District, Kerala. Three Focus Group Discussions and 21 In-Depth Interviews were conducted among a purposively sampled group of participants including palliative care providers and patients. The validity of the data was ensured by data triangulation and member checks using standard methodologies. All interviews were audio recorded and thematic analysis was done using the Braun & Clarke method.ResultsPCPs experienced a multitude of positive and negative experiences and challenges. They found contentment in establishing an intimate relationship with patients and their families, getting the opportunity to deliver need-based quality care, crossing the hurdles of social acceptance and creating opportunities from challenges; giving them a feeling of satisfaction and self-worth. Challenges faced by caregivers included a lack of acceptance from patients/families, stress, burnout, and helplessness. Additionally, although the program was running efficiently in the community, palliative care providers faced administrative, organizational, and personal barriers that they felt impeded their contributions.ConclusionsThe study gives an in-depth illustration of the challenges and ambivalent experiences of palliative care providers working under Kerala’s home-based palliative care programme, providing care to a vulnerable section of society. The caregivers themselves represent an underprivileged community of nurses who struggle to provide the highest possible care despite the challenges and difficulties.

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.

Heart failure affects 6.5 million Americans, with 1 million hospitalizations annually, a 22% readmission rate, and $31 billion in health care costs. Palliative care decreases symptom burden, readmissions, and costs. Many elderly patients have difficulty recognizing and reporting heart failure symptoms to their providers in a timely manner. Self-management tools with color-coded zones (green = "all clear," yellow = "caution," red = "take action") help patients recognize and respond to heart failure symptoms and reduce readmissions. The purpose of this quality improvement project was to develop, implement, and evaluate a low-literacy zone tool for heart failure self-management with home-based palliative care patients. An interdisciplinary palliative care team developed this zone tool. Health literacy was prescreened with the Newest Vital Sign instrument. Nurses provided the zone tool to patients and caregivers and instructed them in use of this tool for daily self-monitoring. In postimplementation surveys, participants rated the zone tool as easy to understand and helpful in recognizing and reporting symptoms. This project demonstrated feasibility of a new zone tool for heart failure self-management, resulting in a practice change for this home-based palliative care program. The interdisciplinary team eventually developed similar zone tools for cancer, cirrhosis, chronic obstructive pulmonary disease, dementia, and frailty self-management.

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.

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.

Understanding the temporal trends in the place of death among patients in receipt of home-based palliative care can help direct health policies and planning of health resources. This paper aims to assess the temporal trends in place of death and its determinants over the past decade for patients receiving home-based palliative care. This paper also examines the impact of early referral to home-based palliative care services on patient's place of death. Survey data collected in a home-based end-of-life care program in Toronto, Canada from 2005 to 2015 were analysed using a multivariate logistic model. The results suggest that the place of death for patients in receipt of home-based palliative care has changed over time, with more patients dying at home over 2006-2015 when compared to 2005. Also, early referral to home-based palliative care services may not increase a patient's likelihood of home death. Understanding the temporal shifts of place of death and the associated factors is essential for effective improvements in home-based palliative care programs and the development of end-of-life care policies.

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

Palliative care aims at improving the quality of life of a patient who is suffering from a chronic serious ailment like that of advanced cancer. Nobody wants to be away from his/her own family, especially when it’s known, he has limited days to live in this world. A patient gets the best treatment when it’s given in his own home and that too by his close ones. When palliative care is provided at the patient’s home, it provides a sense of safety, privacy, confidentiality and peace of mind for the patient. Specialist home-based palliative care improves symptom control, health-related communication and psychosocial support. It helps in better preparing the patient and the family members to accept death. It is provided by a team of trained members which includes doctor, nurse, social worker, volunteers, physiotherapist etc. They pay regular visits at the home of the patient and provide necessary health care to the patient. Considering the increasing cost of treatment of chronic illnesses, it’s sometimes hard on the part of the family to continue treatment in a hospital or hospice. It’s especially true in scenarios where population are not protected financially, in countries like India. The family members also play a vital role in home-based palliative care. They get trained from the team to learn the basics of palliation. Home based palliative care needs to be integrated into regular home health care services.

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.

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...

Background: An interdisciplinary palliative care team began exploring evaluation tools used to assess changes in the knowledge, skills, and attitudes of learners participating in clinical learning experiences on an interdisciplinary palliative care consult service. This article will review existing evaluation tools, examine the themes that emerge, discuss their strengths and limitations, and make recommendations for continued development in the field. Methods and Findings: A literature search was performed using the MEDLINE database. Search terms included combinations of the following: interdisciplinary education, assessment/evaluation, and palliative care or palliative care assessment/test. Four hundred eighty-seven articles were captured during the initial search. Articles that focused on student readiness for interdisciplinary education and team self-assessments of current interdisciplinary collaboration practices were excluded. Nine articles were included in the review. Evaluation tools varied in terms of learner type, assessment type, and frequency. No tool was comprehensive in the assessment of knowledge, skills, and attitudes or truly interdisciplinary. Conclusions: There is a lack of comprehensive and interdisciplinary evaluation tools in the published literature. Further research should be conducted to develop a tool that meets the needs of learners in clinical experiences within an interdisciplinary service.

Public Awareness and Perceptions of Palliative and Comfort Care