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Arisanti, Nita, Dany Hilmanto, Elsa Pudji Setiawati, and Veranita Pandia. "The Need for Palliative Care in Primary Health Care." Review of Primary Care Practice and Education (Kajian Praktik dan Pendidikan Layanan Primer) 1, no. 3 (December 9, 2018): 103. http://dx.doi.org/10.22146/rpcpe.41691.
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.................... The access to palliative care in ends of life is one of the patients’ rights. Therefore it should be delivered into every level of health care for patients and family members. In some countries, palliative care is more frequent delivered in hospitals compare to primary health care, even though primary health care has a significant role in providing palliative care. Most families prefer to care for patients at home rather than in the hospital................................... The implementation of palliative care in Indonesia is still very limited to certain hospitals, even though doctors in primary care have great potential to offer such care to people in the community. Some of the factors contributing to the implementation are cultural and socioeconomic factors, patient and family perceptions, attitudes of service providers, lack of trained personnel, distribution of palliative care units, lack of consolidation and limited funds. As a result, patients with end-stage disease die in hospitals without receiving palliative care or dying at home with inadequate support................
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Taché, Stéphanie, Véronique Chapuis, Catherine Goehring, and Louis Loutan. "Access to palliative care in Bosnia-Herzegovina: a primary care issue." European Journal of General Practice 10, no. 1 (January 2004): 31–32. http://dx.doi.org/10.3109/13814780409094225.
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Cumming, M., F. Boreland, and D. Perkins. "Do rural primary health care nurses feel equipped for palliative care?" Australian Journal of Primary Health 18, no. 4 (2012): 274. http://dx.doi.org/10.1071/py11150.
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Community primary health care nurses in rural and remote settings are required to provide palliative care as part of their generalist role. They have limited access to specialist medical and nursing support and sometimes there are no resident GPs. A study consisting of a mailed survey and follow-up interviews was conducted to explore the experiences of these nurses and to determine how personally and professionally equipped they felt for palliative care service provision. Most participants were registered nurses experienced in nursing and in rural and remote settings, who juggled multiple generalist work roles. They had only occasional palliative care patients, and more than half had provided palliative care for a friend or family member. Some nurses found palliative care rewarding, others preferred not to have to do it. However, even those who did not enjoy working with palliative care patients often went beyond the ‘call of duty’ to support a home death if that was what the patient wanted. Three-quarters had attended palliative care education in the last 2 years but 88% wanted more education. Barriers to education included competing work roles, work load, geographical isolation and lack of backfill. Support from managers and peers was considered important, as was accessing timely and relevant clinical support.
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Hoe, Deborah, Yu-Hsuan Wang, Kate Meyers, and Susan Enguidanos. "PALLIATIVE CARE... WHAT’S THAT? : MEDICAID PATIENT-IDENTIFIED BARRIERS TO PALLIATIVE CARE." Innovation in Aging 3, Supplement_1 (November 2019): S917. http://dx.doi.org/10.1093/geroni/igz038.3342.
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Abstract Multiple studies demonstrate most consumers do not know about palliative care. And, since January 2018, California’s Medi-Cal Managed Care patients have been eligible for palliative care services under Senate Bill 1004 (SB 1004). Yet, the uptake of palliative care services has been underwhelming. The purpose of this study is to explore patient-centered barriers to palliative care. We recruited 27 adult Medicaid patients suffering from advanced cancer, chronic obstructive pulmonary disease, congestive heart failure, or liver disease, from community-based sites in Los Angeles, and conducted semi-structured qualitative interviews. Each participant was asked questions to elicit their knowledge about, and perspectives on, palliative care as well as their preferred communication approaches for receiving a referral to palliative care. The interviews were audio-recorded and transcribed verbatim. We used a grounded theory approach to guide our analysis of primary themes. Our findings indicated that the barriers to palliative care referrals among this population included lack of knowledge about palliative care and available services; the reliance on, and trust in, primary care physicians for information; language and cultural barriers; and patient believing they are neither old enough nor sick enough to need palliative care. This population also preferred direct contact, with in-person consultations more favorable than telephone calls. These findings emphasize the critical role primary care physicians play in advocating for safety net patients and the necessity for culturally sensitive education about palliative care. Promoting knowledge and understanding of palliative care among both primary care physicians and consumers is vital to ensuring access to care.
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Edelen, Connie, and Nicole Koesel. "Integration of oncology palliative care in a regional health care system." Journal of Clinical Oncology 32, no. 31_suppl (November 1, 2014): 34. http://dx.doi.org/10.1200/jco.2014.32.31_suppl.34.
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34 Background: Early incorporation of palliative medicine in cancer care has been shown to be associated with improved symptom control, quality of life, and patient and family satisfaction however integration in the outpatient setting remains deficient nationwide. Regional healthcare systems carry the additional challenge of providing consistent quality care across a diverse geographic area. We performed a retrospective review of oncology palliative care utilization in a regional healthcare system following the implementation of a fully integrated model of palliative care. Methods: In 2012, Levine Cancer Institute (LCI) and Carolinas Palliative Care collaborated to establish palliative care access across its 12-site regional cancer center. This was a transition from a vendor service to a fully embedded clinic at multiple LCI locations. The new model offered full time outpatient multidisciplinary services in addition to an inpatient oncology palliative care consult service. Standardization of care and early integration were augmented by the creation of symptom management guidelines and tumor treatment pathways with built in recommendations for palliative/supportive care. Results: New oncology palliative care referrals increased from 150 annually to over 475 in the first 12 months. The top diagnoses were lung (16%), breast (11%), and head and neck cancer (7.2%) with pain and symptom management as the primary reason for consultation. Ten symptom management pathways have been published for regional utilization, enabling primary palliative care and serving as a trigger for palliative specialist consultation. A toolkit was created to identify operational needs, clinical tools, and staffing at each site. Conclusions: The growth of oncology palliative care utilization by 317% demonstrates the success of a fully embedded program. This multidisciplinary model is being standardized across regional sites to ensure access to primary and secondary palliative care. Additional clinic sites and the application of telemedicine for rural areas are in development. Future research is needed to document outcomes associated with palliative care integration across the cancer trajectory in a regional healthcare system.
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Kuruvilla, Lisha, Greg Weeks, Peter Eastman, and Johnson George. "Medication management for community palliative care patients and the role of a specialist palliative care pharmacist: A qualitative exploration of consumer and health care professional perspectives." Palliative Medicine 32, no. 8 (May 25, 2018): 1369–77. http://dx.doi.org/10.1177/0269216318777390.
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Background: Pharmacists have a key role to play in optimisation of medication regimens and promotion of medication safety. The role of specialist pharmacists as part of the multidisciplinary palliative care team, especially in the primary care setting, is not widely recognised. Aim: To explore the perspectives of stakeholders about the gaps in the current model of community palliative care services in relation to medication management and to assess their opinions pertaining to the role of a specialist palliative care pharmacist in addressing some of those gaps. Design: Qualitative study utilising three focus groups involving 20 stakeholders. Thematic analysis was carried out using a framework approach and interpreted in the context of the Chronic Care Model for improving primary care for patients with chronic illness. Setting/Participants: Setting was a large regional Australian palliative care service. Participants included palliative care consumers and clinicians specifically patients, caregivers, physicians, nurses and pharmacists. Results: Five major themes emerged from the focus groups: access to resources, medicines and information; shared care; challenges of polypharmacy; informal caregiver needs and potential roles of a palliative care pharmacist. Gaps in access to medicines/resources, training for generalist practitioners, communication between treating teams and lack of support for patients and carers were cited as factors adversely impacting medication management in community-based palliative care. Conclusion: While community-based palliative care is an essential aspect of meeting the health care demands of an ageing society, the current model has several gaps and limitations. An appropriately qualified and skilled pharmacist within the palliative care team may help to address some of the gaps in relation to medication access and appropriateness.
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Lam, Daniel Y., Jennifer S. Scherer, Mark Brown, Vanessa Grubbs, and Jane O. Schell. "A Conceptual Framework of Palliative Care across the Continuum of Advanced Kidney Disease." Clinical Journal of the American Society of Nephrology 14, no. 4 (February 6, 2019): 635–41. http://dx.doi.org/10.2215/cjn.09330818.
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Kidney palliative care is a growing discipline within nephrology. Kidney palliative care specifically addresses the stress and burden of advanced kidney disease through the provision of expert symptom management, caregiver support, and advance care planning with the goal of optimizing quality of life for patients and families. The integration of palliative care principles is necessary to address the multidimensional impact of advanced kidney disease on patients. In particular, patients with advanced kidney disease have a high symptom burden and experience greater intensity of care at the end of life compared with other chronic serious illnesses. Currently, access to kidney palliative care is lacking, whether delivered by trained kidney care professionals or by palliative care clinicians. These barriers include a gap in training and workforce, policies limiting access to hospice and outpatient palliative care services for patients with ESKD, resistance to integrating palliative care within the nephrology community, and the misconception that palliative care is synonymous with end-of-life care. As such, addressing kidney palliative care needs on a population level will require not only access to specialized kidney palliative care initiatives, but also equipping kidney care professionals with the skills to address basic kidney palliative care needs. This article will address the role of kidney palliative care for patients with advanced kidney disease, describe models of care including primary and specialty kidney palliative care, and outline strategies to improve kidney palliative care on a provider and system level.
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Pugh, Arlanna, Heather Castleden, Melissa Giesbrecht, Colleen Davison, and Valorie Crooks. "Awareness as a dimension of health care access: exploring the case of rural palliative care provision in Canada." Journal of Health Services Research & Policy 24, no. 2 (April 2019): 108–15. http://dx.doi.org/10.1177/1355819619829782.
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Objectives In Canada, the rural elderly population is increasing in size, as is their need for palliative care services in these settings. This analysis aims to identify awareness-associated barriers to delivering rural palliative care services, along with suggestions for improving service delivery from the perspective of local health care providers. Methods A total of 40 semi-structured interviews with various formal and informal health care providers were conducted in four rural and/or remote Canadian communities with limited palliative care resources. Interview data were thematically coded using Penchansky and Thomas’ five dimensions of access (i.e. availability, (geographic) accessibility, accommodation, acceptability and affordability). Saurman’s recently added sixth dimension of access – awareness – was also identified while coding and subsequently became the primary focus of this analysis. Results Identified barriers to palliative care awareness and suggestions on how to enhance this awareness, and ultimately palliative care delivery, corresponded with three key themes arising from the data: limited palliative care knowledge/education, communication and coordination. Participants recognized the need for more palliative care education, open lines of communication and better coordination of palliative care initiatives and local resources in their communities. Conclusions These findings suggest that identifying the barriers to palliative care awareness in rural communities may be foundational to addressing barriers to the other five dimensions of access. A thorough understanding of these three areas of awareness knowledge, communication and coordination, as well as the connections between them, may help enhance how rural palliative care is delivered in the future.
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Beasley, Amy M., Marie A. Bakitas, Nataliya Ivankova, and Maria R. Shirey. "Evolution and Conceptual Foundations of Nonhospice Palliative Care." Western Journal of Nursing Research 41, no. 10 (June 6, 2019): 1347–69. http://dx.doi.org/10.1177/0193945919853162.
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The term nonhospice palliative care was developed to describe and differentiate palliative care that is delivered prior to the end of life. The purpose of this article is to better define and clarify this concept using Rodgers’s evolutionary concept analysis method. Attributes of nonhospice palliative care include (a) patient- and family-centered care, (b) holistic care, (c) interdisciplinary team, (d) early intervention, (e) quality of life-enhancing, (f) advanced care planning, (g) any age of the patient, (h) at any stage in illness, (i) care coordination, (j) concurrent curative treatment options, and (k) provided by primary and specialist providers. Nonhospice palliative care antecedents are serious illness, education, and access to services; consequences include benefits for the patient, family, provider, and health care system. Offering a clearly defined concept may allow for changes in health care to improve access to these services.
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Kananga, A. Mubeneshayi. "Coordination of Care Within a Mobile Palliative Care Team and Organization of a Continuing Education Program for Health Professionals in Palliative Care." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 62s. http://dx.doi.org/10.1200/jgo.18.36800.
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Background: In DR Congo (DRC), many cancer patients in the terminal phase of their condition have minimal access to palliative care. There is a combined effect of poverty, the deterioration of the health system and the absence of a well-defined national policy on palliative care. Patients are for the most part abandoned to the care of inexperienced family members. Founded in 2009, Palliafamilli aims to improve the quality of life of patients requiring palliative care in the DRC by providing visits and care for patients, by striving to increase access to palliative care in the region and by informing, raising awareness and mobilizing key national stakeholders. In September 2018, Palliafamilli will launch a mobile palliative care team (MPCT) in partnership with the general hospital of Ndjili in Kinshasa. The MPCT is an interdisciplinary team consisting of physicians, nurses, a psychologist and a project manager; all experienced in accompaniment, symptom management and palliative emergency. It has a consultancy role for professionals, patients and their caregivers. Aim: Through a African Cancer Fellowship award, I will visit a mobile team of palliative care from CHRU Besançon, France, for one month in May 2018 to gain experience in designing and implementing best practices for a mobile palliative care team. Methods: I will work closely with the mobile palliative care team of the Besançon Regional Hospital Center to gain experience regarding the coordination and care administration of palliative care within a mobile team. I will also learn about the different programs of continuing education for health professionals, make comparisons and adapt the programs to the reality of DR Congo. Results: With a view to promoting access to palliative care patients, I intend to learn from the host organization the best practices that they apply to overcome communication difficulties with the patient and their relatives which can constitute delays to access to adequate care. This delay is more marked for patients suffering from cancer because the evolution of their pathology is unpredictable. The main barriers are the insufficient knowledge of patients' needs and the opportunities offered by palliative care. Upon my return, I will adapt the best practices learned in France to the DRC context during the launch of the new mobile palliative care team. Conclusion: In Congo, a cross-cutting approach is required to provide patients with palliative care and pain relief, as resources are limited, many people are in need of care, and there are few nurses and doctors empowered to provide care. An effective approach is to involve community or volunteer caregivers supervised by health professionals, and Palliafamilli is successful due in its multidisciplinary and multisectoral approach, with adaptation to cultural, social and economic specificities and its integration with existing health systems, focusing on primary health care and community and home care.
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Nakanishi, Miharu, Asao Ogawa, and Atsushi Nishida. "Availability of home palliative care services and dying at home in conditions needing palliative care: A population-based death certificate study." Palliative Medicine 34, no. 4 (January 23, 2020): 504–12. http://dx.doi.org/10.1177/0269216319896517.
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Background: Avoiding inappropriate care transition and enabling people with chronic diseases to die at home have become important health policy issues. Availability of palliative home care services may be related to dying at home. Aim: After controlling for the presence of hospital beds and primary care physicians, we examined the association between availability of home palliative care services and dying at home in conditions requiring such services. Design: Death certificate data in Japan in 2016 were linked with regional healthcare statistics. Setting/participants: All adults (18 years or older) who died from conditions needing palliative care in 2016 in Japan were included. Results: There were 922,756 persons included for analysis. Malignant neoplasm (37.4%) accounted for most decedents, followed by heart disease including cerebrovascular disease (31.4%), respiratory disease (14.7%) and dementia/Alzheimer’s disease/senility (11.5%). Of decedents, 20.8% died at home or in a nursing home and 79.2% died outside home (hospital/geriatric intermediate care facility). Death at home was more likely in health regions with fewer hospital beds and more primary care physicians, in total and per condition needing palliative care. Number of home palliative care services was negatively associated with death at home. The adjustment for home palliative care services disappeared in heart disease including cerebrovascular disease and reversed in respiratory disease. Conclusion: Specialised home palliative care services may be suboptimal, and primary care services may serve as a key access point in providing baseline palliative care to people with conditions needing palliative care. Therefore, primary care services should aim to enhance their palliative care workforce.
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Lafond, Deborah A., Sabrina Bowling, Justine Mize Fortkiewicz, Cheryl Reggio, and Pamela S. Hinds. "Integrating the Comfort Theory™ Into Pediatric Primary Palliative Care to Improve Access to Care." Journal of Hospice & Palliative Nursing 21, no. 5 (October 2019): 382–89. http://dx.doi.org/10.1097/njh.0000000000000538.
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ElMokhallalati, Yousuf, Stephen H. Bradley, Emma Chapman, Lucy Ziegler, Fliss EM Murtagh, Miriam J. Johnson, and Michael I. Bennett. "Identification of patients with potential palliative care needs: A systematic review of screening tools in primary care." Palliative Medicine 34, no. 8 (June 7, 2020): 989–1005. http://dx.doi.org/10.1177/0269216320929552.
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Background: Despite increasing evidence of the benefits of early access to palliative care, many patients do not receive palliative care in a timely manner. A systematic approach in primary care can facilitate earlier identification of patients with potential palliative care needs and prompt further assessment. Aim: To identify existing screening tools for identification of patients with advanced progressive diseases who are likely to have palliative care needs in primary healthcare and evaluate their accuracy. Design: Systematic review (PROSPERO registration number CRD42019111568). Data sources: Cochrane, MEDLINE, Embase and CINAHL were searched from inception to March 2019 Results: From 4,127 unique articles screened, 25 reported the use or development of 10 screening tools. Most tools use prediction of death and/or deterioration as a proxy for the identification of people with potential palliative care needs. The tools are based on a wide range of general and disease-specific indicators. The accuracy of five tools was assessed in eight studies; these tools differed significantly in their ability to identify patients with potential palliative care needs with sensitivity ranging from 3% to 94% and specificity ranging from 26% to 99%. Conclusion: The ability of current screening tools to identify patients with advanced progressive diseases who are likely to have palliative care needs in primary care is limited. Further research is needed to identify standardised screening processes that are based not only on predicting mortality and deterioration but also on anticipating the palliative care needs and predicting the rate and course of functional decline. This would prompt a comprehensive assessment to identify and meet their needs on time.
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Johnston, Nikki, Clare Lovell, Wai-Man Liu, Michael Chapman, and Liz Forbat. "Normalising and planning for death in residential care: findings from a qualitative focus group study of a specialist palliative care intervention." BMJ Supportive & Palliative Care 9, no. 1 (August 3, 2016): e12-e12. http://dx.doi.org/10.1136/bmjspcare-2016-001127.
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BackgroundImproving access to palliative care for older adults living in residential care is recognised internationally as a pressing clinical need. The integration of specialist palliative care in residential care for older adults is not yet standard practice.ObjectiveThis study aimed to understand the experience and impact of integrating a specialist palliative care model on residents, relatives and staff.MethodsFocus groups were held with staff (n=40) and relatives (n=17). Thematic analysis was applied to the data.ResultsThree major themes were identified. The intervention led to (1) normalising death and dying in these settings, (2) timely access to a palliative care specialist who was able to prescribe anticipatory medications aiding symptom management and unnecessary hospitalisations and (3) better decision-making and planned care for residents, which meant that staff and relatives were better informed about, and prepared for, the resident's likely trajectory.ConclusionsThe intervention normalised death and dying and also underlined the important role that specialists play in providing staff education, timely access to medicines and advance care planning. The findings from our study, and the growing wealth of evidence integrating specialist palliative care in residential care for older adults, indicate a number of priorities for care providers, academics and policymakers. Further work on determining the role of primary and specialist palliative care services in residential care settings is needed to inform service delivery models.
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Tribett, Erika Lauren, Jordan Chavez, and Alison Morris. "Utilizing design theory to create a patient-centered palliative care model in cancer survisorship care." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): 164. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.164.
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164 Background: Palliative medicine (PM) is an essential component of survivorship care from point of diagnosis. While PM is philosophically committed to supporting patient and family survivorship goals, very few programs incorporate patient and family input into the formation of a patient-centered model of care for symptom management and quality of life. We utilized design theory to develop novel interventions for primary and specialist PM delivery. Methods: Baseline data collected in Fall 2014 revealed a need for assistance navigating support services as well as barriers to PM integration including branding, lack of primary palliative skills, and poor understanding of outcomes of PM integration. In February 2015, we convened a multidisciplinary group of 25 patients, family members, oncology clinicians and experts in patient experience and health services research, to evaluate current state data and formulate ideas for optimizing PM to support symptom management and quality of life. During a 1-day workshop, the group generated interventions for primary and specialist PM. Small teams were assigned to pilot projects based on these recommendations. Proposed solutions are being tested from July - October 2015. Results: The design team generated five focus areas for meeting patient needs and overcoming barriers: standard processes for access to PM, education on primary PM, rapid reporting of outcomes, relationship-building with referring clinicians, and improved access to primary and specialist palliative resources. Three interventions are being developed to address these: 1. A subspecialist “hub” that allows single referrals and streamlined access to supportive care, 2. a novel two-question probe about goals conducted by the oncologist, and 3. a peer support system between PM social work and nursing staff to proactively manage patients with complex needs. Conclusions: Patient and family-centered PM mandates a novel approach. Design theory allows for clear delineation of problem areas, generation of multiple solution sets, and rapid testing and refinement prior to large-scale adoption. A participatory design approach emphasizes user values and limitations and creates values-based solutions.
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Tieman, J. J. "Filters and hubs: shortening the distance to palliative care evidence." Australian Journal of Primary Health 18, no. 4 (2012): 268. http://dx.doi.org/10.1071/py11103.
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Palliative care is an integral part of the care provided by GPs and other primary health care providers, and as Australia’s population ages and the palliative care needs of patients with end stage organ failure are recognised, this area of care is likely to increase. Using a knowledge translation framework, two strategies have been used to develop resources to support those providing palliative care in the community. PubMed searches on a range of common palliative care topics and incorporating a palliative care filter provide an easy and validated mechanism to retrieve relevant literature. A ‘GP Hub’ offers knowledge, skills and practical advice for GPs who provide palliative care in the community. Both resources are freely available within the CareSearch website, ensuring immediate access to palliative care information and evidence when it is needed.
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Hui, David, and Eduardo Bruera. "Models of Palliative Care Delivery for Patients With Cancer." Journal of Clinical Oncology 38, no. 9 (March 20, 2020): 852–65. http://dx.doi.org/10.1200/jco.18.02123.
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Palliative care has evolved over the past five decades as an interprofessional specialty to improve quality of life and quality of care for patients with cancer and their families. Existing evidence supports that timely involvement of specialist palliative care teams can enhance the care delivered by oncology teams. This review provides a state-of-the-science synopsis of the literature that supports each of the five clinical models of specialist palliative care delivery, including outpatient clinics, inpatient consultation teams, acute palliative care units, community-based palliative care, and hospice care. The roles of embedded clinics, nurse-led models, telehealth interventions, and primary palliative care also will be discussed. Outpatient clinics represent the key point of entry for timely access to palliative care. In this setting, patient care can be enhanced longitudinally through impeccable symptom management, monitoring, education, and advance care planning. Inpatient consultation teams provide expert symptom management and facilitate discharge planning for acutely symptomatic hospitalized patients. Patients with the highest level of distress and complexity may benefit from an admission to acute palliative care units. In contrast, community-based palliative care and hospice care are more appropriate for patients with a poor performance status and low to moderate symptom burden. Each of these five models of specialist palliative care serve a different patient population along the disease continuum and complement one another to provide comprehensive supportive care. Additional research is needed to define the standards for palliative care interventions and to refine the models to further improve access to quality palliative care.
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Taylor, Johanna, Alison Booth, Bryony Beresford, Bob Phillips, Kath Wright, and Lorna Fraser. "Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review." Palliative Medicine 34, no. 6 (May 2, 2020): 731–75. http://dx.doi.org/10.1177/0269216320908490.
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Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000–2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Results: An evidence base of mainly low- and moderate-quality studies ( n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children’s symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life.
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de Nooijer, Kim, Yolanda WH Penders, Lara Pivodic, Nele J. Van Den Noortgate, Peter Pype, and Lieve Van den Block. "Specialist palliative care services for older people in primary care: A systematic review using narrative synthesis." Palliative Medicine 34, no. 1 (September 28, 2019): 32–48. http://dx.doi.org/10.1177/0269216319874978.
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Background: There is recognition that older people with incurable conditions should have access to specialist palliative care services. However, it remains unclear which activities and outcomes these services entail for older people in primary care and to which patients they are provided. Aim: The aim of this review was to identify the criteria for referral to specialist services; who provides specialist palliative care; through which activities and with which frequency; which outcomes are reported; and which suggestions are made to improve services. Design: Systematic review of the literature and narrative synthesis. Quality appraisal and selection of studies were performed independently by two researchers. Participant characteristics, intervention features, outcome data and suggestions for improvement were retrieved. Data sources: Embase, Medline, Web of Science, Cochrane, Google Scholar, PsycINFO and CINAHL EBSCO databases (until June 2019). Results: Ten eligible articles, three qualitative, three quantitative, three mixed-method and one narrative review, were identified. Referral criteria were mainly based on patient characteristics such as diagnosis. The specialist services involved a variety of activities and outcomes and descriptions were often lacking. Services could be improved regarding the information flow between healthcare professionals, greater in-depth palliative care knowledge for case managers and social workers, identification of a key worker and support for family carers. Conclusion: The limited evidence available shows areas for improvement of the quality of and access to specialist services for older people, such as support for family carers. In addition, this review underscores the need for comprehensive reporting of interventions and the use of consensus-based outcome measures.
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Knaul, Felicia Marie, Virginia Townsend LeBaron, Mariana Calderon, Hector Arreola-Ornelas, Afsan Bhadelia, Eric Lewis Krakauer, Marta Ximena Leon, Diederik Lohman, Karla Petersen O'Farrill, and Liliana De Lima. "Developing palliative care capacity in Colombia and Mexico." Journal of Clinical Oncology 32, no. 31_suppl (November 1, 2014): 103. http://dx.doi.org/10.1200/jco.2014.32.31_suppl.103.
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103 Background: Access to pain relief and palliative care often is limited or absent in low-and-middle-income countries (LMICs). Consequently, millions of patients with cancer and other serious illnesses in LMICs suffer needlessly. Multiple stakeholders have joined efforts to enhance the delivery of palliative care, develop national plans, and advocate for improved policies and regulations in Colombia and Mexico with applications to other LMICs. Methods: In Mexico and Colombia, efforts to improve access to palliative care focus on regulatory frameworks, finance, delivery, research and capacity-building, as per World Health Organization recommendations. In Colombia, health and educational institutions have partnered with non-governmental organizations to advise the Ministry of Health (MOH) and Senate. In Mexico, a range of governmental, legislative and private institutions are developing a National Palliative Care Plan. Results: Colombia: Laws passed in 2010 and 2013 require palliative care be available for all cancer patients. The allowable length of opioid prescriptions has been extended from 10 to 30 days, strong opioids must be freely available, and the MOH requires at least 1 pharmacy per State be able to dispense opioids 24/7. Mexico: Amendments to the health law introduced palliative care and pain management as a right for people with terminal illness. The government plans a new digital system to make opioid prescribing more efficient and secure, and the pharmaceutical industry is developing systems for monitoring production and supply. Yet, in both countries, palliative care training is mandatory in less than 5% of medical schools and innovative materials are being developed to train practicing primary care personnel. Conclusions: To meet palliative care needs in LMICs, novel approaches are required to develop and implement national plans, train healthcare providers, educate government officials, and advocate for policies that improve equitable access. Exemplary work in Colombia and Mexico illustrate effective strategies to improve palliative care delivery in LMICs.
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Tadipatri, Ramya, Amir Azadi, Madison Cowdrey, Samuel Fongue, Paul Smith, Evangelia Razis, Maria Boccia, and Ekokobe Fonkem. "QOLP-03. NEURO-ONCOLOGY PALLIATIVE CARE SURVEY OF PHYSICIANS IN SUB-SAHARAN AFRICA." Neuro-Oncology 22, Supplement_2 (November 2020): ii175. http://dx.doi.org/10.1093/neuonc/noaa215.728.
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Abstract BACKGROUND Early access to palliative care is a critical component of treating patients with advanced cancer, particularly for glioblastoma patients who have low rates of survival despite optimal therapies. Additionally, there are unique considerations for primary brain tumor patients given the need for management of headaches, seizures, and focal neurological deficits. METHODS We conducted a survey of 109 physicians in Sub-Saharan Africa in order to determine level of understanding and skill in providing palliative care, types of palliative care therapies provided, role of cultural beliefs, availability of resources, and challenges faced. Demographic data including age, gender, and prior training was collected and analyzed using ANOVA statistical testing. RESULTS Among the participants, 48% felt comfortable in providing palliative care consultations, 62% have not had prior training, 52% believed that palliative care is only appropriate when there is irreversible deterioration, 62% expressed having access to palliative care, 49% do not have access to liquid opioid agents, 50% stated that cultural beliefs held by the patient or family prevented them from receiving, palliative care, and 23% stated that their own beliefs affected palliative care delivery. Older providers (age > 30) had a clearer understanding of palliative care (p = 0.004), were more comfortable providing consultation (p = 0.052), and were more likely to address mental health (p < 0.001). CONCLUSIONS Palliative care delivery to glioblastoma patients in Sub-Saharan Africa is often delayed until late in the disease course. Barriers to adequate palliative care treatment identified in this survey study include lack of training, limited access to liquid opioid agents, and cultural beliefs. Challenges most often identified by participants were pain management and end-of-life communication skills, but also included patient spirituality and psychological support, anxiety and depression, terminal dyspnea, ethics, and intravenous hydration and non-oral feeding.
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Desai, Anjali V., Virginia M. Klimek, Kimberly Chow, Andrew S. Epstein, Camila Bernal, Kelly Anderson, Molly Okpako, et al. "1-2-3 Project: A Quality Improvement Initiative to Normalize and Systematize Palliative Care for All Patients With Cancer in the Outpatient Clinic Setting." Journal of Oncology Practice 14, no. 12 (December 2018): e775-e785. http://dx.doi.org/10.1200/jop.18.00346.
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Background: Prior work to integrate early palliative care in oncology has focused on patients with advanced cancer and primarily on palliative care consultation. We developed this outpatient clinic initiative for newly diagnosed patients at any stage, emphasizing primary (nonspecialist) palliative care by oncology teams, with enhanced access to palliative care specialists. Methods: We piloted the project in two medical oncology specialty clinics (for patients with myelodysplastic syndrome and GI cancer, respectively) to establish feasibility. On a visit-based schedule, patients systematically reported symptoms, information/decision-making preferences, and illness understanding. They also participated in discussions of their core values with their oncology nurse. Oncology teams were first responders to palliative care needs, whereas specialists were available for clinician support and direct patient consultation. Results: All 58 eligible patients were enrolled. In both clinics, patient self-reports documented a heavy symptom burden. Information/decision-making preferences and illness understanding levels varied across patients. Patients prepared new advance directives. Oncology nurses documented discussions of core values. Requests for palliative care consultation decreased over time as oncology teams embraced their primary palliative care role with coaching from the specialists. Clinic workflow and patient volume were maintained. Conclusion: Our pilot experience suggests that in outpatient oncology clinics, a structured, scheduled, and systematic approach is feasible to deliver palliative care to newly diagnosed patients with cancer at any stage and throughout their illness trajectory. This novel approach identified important, actionable palliative care needs, relying primarily on oncology teams to respond to these needs, while enhancing access to palliative care specialist input. Expansion to additional clinics will allow evaluation of scalability and generalizability, along with measurement of a broader range of important outcomes.
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Martz, Kim, Jenny Alderden, Rick Bassett, and Dawn Swick. "Outcomes Associated With a Nurse-Driven Palliative Care Screening Tool in the Intensive Care Unit." Critical Care Nurse 40, no. 3 (June 1, 2020): 23–29. http://dx.doi.org/10.4037/ccn2020702.
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Background Access to specialty palliative care delivery in the intensive care unit is inconsistent across institutions. The intensive care unit at the study institution uses a screening tool to identify patients likely to benefit from specialty palliative care, yet little is known about outcomes associated with the use of screening tools. Objective To identify outcomes associated with specialty palliative care referral among patients with critical illness. Methods Records of 112 patients with positive results on palliative care screening were retrospectively reviewed to compare outcomes between patients who received a specialty palliative care consult and those who did not. Primary outcome measures were length of stay, discharge disposition, and escalation of care. Results Sixty-five patients (58%) did not receive a palliative care consult. No significant differences were found in length of hospital or intensive care unit stay. Most patients who experienced mechanical ventilation did not receive a palliative care consultation (χ2 = 5.14, P = .02). Patients who were discharged to home were also less likely to receive a consult (χ2 = 4.1, P = .04), whereas patients who were discharged to hospice were more likely to receive a consult (χ2 = 19.39, P < .001). Conclusions Unmet needs exist for specialty palliative care. Understanding the methods of identifying patients for specialty palliative care and providing them with such care is critically important. Future research is needed to elucidate the factors providers use in their decisions to order or defer specialty palliative care consultation.
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den Herder-van der Eerden, Marlieke, Benjamin Ewert, Farina Hodiamont, Michaela Hesse, Jeroen Hasselaar, and Lukas Radbruch. "Towards accessible integrated palliative care." Journal of Integrated Care 25, no. 3 (July 3, 2017): 222–32. http://dx.doi.org/10.1108/jica-03-2017-0006.
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Purpose Literature suggests that integrated palliative care (IPC) increases the quality of care for palliative patients at lower costs. However, knowledge on models encompassing all integration levels for successfully implementing IPC is scarce. The purpose of this paper is to describe the experiences of IPC leaders in seven European countries regarding core elements, facilitators and barriers of IPC implementation and provides recommendations for future policy and practice. Design/methodology/approach A qualitative interview study was conducted between December 2013 and May 2014. In total, 34 IPC leaders in primary and secondary palliative care or public health in Belgium, Germany, Hungary, Ireland, the Netherlands, Spain and the UK were interviewed. Transcripts were analysed using thematic data analysis. Findings IPC implementation efforts involved a multidisciplinary team approach and cross-sectional coordination. Informal professional relationships, basic medical education and general awareness were regarded as facilitators of IPC. Identified barriers included lack of knowledge about when to start palliative care, lack of collaboration and financial structures. Recommendations for improvement included access, patient-centeredness, coordination and cooperation, financing and ICT systems. Originality/value Although IPC is becoming more common, action has been uneven at different levels. IPC implementation largely remains provisional and informal due to the lack of standardised treatment pathways, legal frameworks and financial incentives to support multilevel integration. In order to make IPC more accessible, palliative care education as well as legal and financial support within national healthcare systems needs to be enhanced.
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Flood, Nora, and Colleen Rivard. "Disparities in access to palliative care for patients treated for gynecologic oncology." Journal of Clinical Oncology 36, no. 34_suppl (December 1, 2018): 136. http://dx.doi.org/10.1200/jco.2018.36.34_suppl.136.
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136 Background: Palliative care intends to improve quality of life for patients with life-threatening illness, but ethnic and linguistic minority patients have worse outcomes with palliative care. Methods: This is a single institution retrospective chart review of patients with an advanced stage or recurrent gynecologic malignancy who were seen in the clinic from 2010 to 2015. Women were defined as being from a minority group if they met one of the inclusion criteria including English not the primary language, race other than white, ethnically Hispanic/Latina, or their country of origin was not the United States. We then compared rates of referral to palliative care between those women who were deemed to be minority women as compared to those who were non-minority. We also compared the time to referral between these two groups. Results: Our study included 277 women of which 20% were categorized as minority. Demographic data between the two groups were well matched with the exception that minority women were diagnosed at a younger age and were more likely to have cervical cancer. Although not statistically significant, more minority women were referred to palliative care than non-minority (79% vs. 89%, p=0.08). In contrast, fewer minority patients were referred to palliative care at least 3 months prior to death when compared to non-minority patients (50% vs. 38%, p =0.10). There was no difference between referral location [inpatients (35% vs. 36%) and outpatients (65% vs. 64%, p=.92)] in minority versus non-minority patients. There was also no significant difference in those patients entering hospice while admitted to the hospital. Minority patients had significantly more cancer-related hospitalizations per year (0.6 vs 1.0, p value 0.02). Conclusions: Our study shows that there is a tendency towards later referral to palliative care for minority patients as compared to non-minority patients. Although more minority patients are referred to palliative care, they are hospitalized for cancer related symptoms at a significantly higher rate suggesting that perhaps their utilization of palliative care services is suboptimal.
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Bowlby, Lynn, Robin Turner, David Casarett, Fred Johnson, Ebony Boulware, Jason Webb, and Morgan Bain. "Integration and expansion of palliative care work force." Journal of Clinical Oncology 35, no. 31_suppl (November 1, 2017): 126. http://dx.doi.org/10.1200/jco.2017.35.31_suppl.126.
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126 Background: The specialty of Hospice and Palliative Medicine has grown out of the need for care of patients who are living longer with cancer and other serious illness and struggle with symptoms, decisions and care. Cancer patients and others often do not have access to Palliative Care services due to availability or accessibility of PC services. Since 2012, fellowship training is required for board eligibility but available programs do not meet the workforce need. As described by Weissman and Meier, viewing Palliative care services in the context of a primary, secondary or tertiary focus , allows for the expansion of these services outside of the traditional fellowship training. With additional intensive training, it is possible that experienced physicians can fill workforce gaps by providing primary palliative care in the providers practice area such as a clinic. Methods: The faculty member who will participate in a yearlong training program based in the Palliative Care Clinic is the Director of the Outpatient Clinic. This clinic is the center of the Duke resident ambulatory experience for the duration of their training. The complexity of these patients is high and often the DOC is the only place that these patients receive care. The Palliative Care training program will provide the faculty member the opportunity to see patients in the cancer center with board certified palliative care physicians. There will be 3 areas of focus for the trainee: clinical experience, didactic information and mentorship from a board certified palliative care provider around faculty identified cases from her own practice. Results: We have developed a yearlong intensive training program for experienced faculty to gain skills in Palliative Care. Conclusions: 1. It is hoped that this will allow for integration of primary palliative care into patient care areas where there is no formal palliative care program. 2. Integration of Palliative Care principles in the clinic to address symptoms of chronic severe illness as well as difficult conversations with more confidence and skill. 3. Earlier palliative care management–develop a systematic approach to assessing needs in high risk populations ie. Hospital Discharge reviews, now commonly done at the clinic.
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Bickel, Kathleen E., Kristen McNiff, Mary K. Buss, Arif Kamal, Dale Lupu, Amy P. Abernethy, Michael S. Broder, et al. "Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and Palliative Medicine Guidance Statement." Journal of Oncology Practice 12, no. 9 (September 2016): e828-e838. http://dx.doi.org/10.1200/jop.2016.010686.
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Purpose: Integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to specialist palliative medicine. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices. Methods: An expert steering committee outlined 966 palliative care service items, in nine domains, each describing a candidate element of primary palliative care delivery for patients with advanced cancer or high symptom burden. Using modified Delphi methodology, 31 multidisciplinary panelists rated each service item on three constructs: importance, feasibility, and scope within medical oncology practice. Results: Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); Communication and Shared Decision Making (79%); and Advance Care Planning (78%). The lowest proportions were in Spiritual and Cultural Assessment and Management (35%) and Psychosocial Assessment and Management (39%). In the largest domain, Symptom Assessment and Management, there was consensus that all symptoms should be assessed and managed at a basic level, with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain. Within the Appropriate Palliative Care and Hospice Referral domain, there was consensus that oncology practices should be able to describe the difference between palliative care and hospice to patients and refer patients appropriately. Conclusion: This statement describes the elements comprising high-quality primary palliative care for patients with advanced cancer or high symptom burden, as delivered by oncology practices. Oncology providers wishing to enhance palliative care delivery may find this information useful to inform operational changes and quality improvement efforts.
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Lobo, Hannabel Hyacinth, and J. Chandrika. "Interdisciplinary Approach to Palliative Care: A Survey of Tools and an Affordable Technique." Journal of Computational and Theoretical Nanoscience 17, no. 9 (July 1, 2020): 3952–57. http://dx.doi.org/10.1166/jctn.2020.8995.
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Palliative care is a multidisciplinary approach to health care for individuals with life limiting illnesses. Its primary focus is to prevent and relive suffering from symptoms related to the illness through early identification, correct assessment and treatment of symptoms such as pain and other physical, psychosocial and spiritual problems. Researchers on palliative care have concluded that increased adaptation of tools enhances identification of patients who would benefit through palliative care and hence provide adequate care suitably. The two significant challenges are introduction of early palliative care and symptoms relief. With advances and easy access to smart phones, opportunities exist for providing improved health care to cancer patients with cost-effective and targeted care coordination. This paper presents a survey of tools designed for palliative care and a feasible framework for designing an Intelligent Multi-Agent System which provides palliative care patients with immediate and proactive medical services through monitoring and diagnosis, therapy and consultation using personal computers and Smart Phones.
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Perri, Giulia-Anna, Nada Abdel-Malek, Aysha Bandali, Haddas Grosbein, and Sandra Gardner. "Early integration of palliative care in a long-term care home: A telemedicine feasibility pilot study." Palliative and Supportive Care 18, no. 4 (February 18, 2020): 460–67. http://dx.doi.org/10.1017/s1478951520000012.
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AbstractObjectivePalliative care plays an essential role in enhancing the quality of life and quality of death for residents in long-term care homes (LTCHs). Access to palliative care specialists is one barrier to providing palliative care to LTCHs. This project focused on palliative telemedicine, specifically evaluating whether integration of early palliative care specialist consultation into an LTCH would be feasible through the implementation of videoconferencing during routine interdisciplinary care conferences.MethodThis was a mixed-methods evaluation of a pilot program implementation over 6 months, to integrate early palliative care into an LTCH. There were two pilot communities with a total of 61 residents. Resident demographics were collected by a chart review, and palliative telemedicine feasibility was evaluated using staff and family member surveys.ResultsFor the 61 residents, the average age of the residents was 87 years, with 61% being female and 69% having dementia as the primary diagnosis. The mean CHESS (Change in Health, End-Stage Disease, Signs, and Symptoms) and ADL (Activities of Daily Living) scores were 0.8 and 4.0, respectively, with 54% having a Palliative Performance Scale score of 40. Seventeen clinical staff surveys on palliative teleconferences were completed with the majority rating their experience as high. Ten out of the 20 family members completed the palliative teleconference surveys, and the majority were generally satisfied with the experience and were willing to use it again. Clinical staff confidence in delivering palliative care through telemedicine significantly increased (P = 0.0021).Significance of resultsThe results support the feasibility of videoconferencing as a means of palliative care provision. Despite technical issues, most clinical staff and families were satisfied with the videoconference and were willing to use it again. Early integration of palliative care specialist services into an LTCH through videoconferencing also led to improved self-rated confidence in the palliative approach to care by clinical staff.
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Miller, Elizabeth M., Joanne E. Porter, and Rebecca Peel. "Palliative and End-of-Life Care in the Home in Regional/Rural Victoria, Australia: The Role and Lived Experience of Primary Carers." SAGE Open Nursing 7 (January 2021): 237796082110362. http://dx.doi.org/10.1177/23779608211036284.
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Introduction Palliative support services (generalist or specialist) can provide much-needed assistance to carers who are providing palliative and end-of-life care in their homes, but access to such services in regional and rural areas of Australia is poorly understood. Objectives This study aimed to explore the role and lived experience of primary carers who are providing palliative and end-of-life care in the home in regional/rural Victoria, Australia. Methods Nine female participants, of whom six were bereaved between 7 and 20 months were interviewed using a semistructured interview technique. Each interview was audio-recorded, transcribed verbatim, and analyzed thematically. Results Two themes emerged: “ Negotiating healthcare systems” which described the needs for multidisciplinary supports and “ The caring experience” which discussed daily tasks, relationships, mental and physical exhaustion, respite, isolation, medication management, and grief and loss. Findings show that regional/rural carers have an added burden of travel stress as well as feeling overwhelmed, isolated, and physically and emotionally exhausted. Carers would benefit from greater flexibility for short-term respite care. The engagement of specialist palliative care services assisted the participants to navigate the health care system. Some participants did not understand the value of palliative care, highlighting the need for general practitioners to conduct early conversations about this with their patients. Education is needed to build capacity within the primary palliative care workforce, confirming the importance of timely referrals to a specialist palliative care practitioner if pain or symptom control is not effectively managed. Conclusion Providing palliative and end-of-life care in the home is an exhausting and emotionally draining role for unpaid, primary carers. Multiple supports are needed to sustain primary carers, as they play an essential role in the primary health care system.
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Clark, Joseph, Elvis Amoakwa, John Blenkinsopp, Florence Reedy, and Miriam Johnson. "What are the opportunities for cancer care and related research in primary care? A qualitative study of the views of patients, carers, and practice staff." British Journal of General Practice 69, suppl 1 (June 2019): bjgp19X703505. http://dx.doi.org/10.3399/bjgp19x703505.
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BackgroundResearch to identify the role of primary care in cancer care is important. However, trials in primary care are difficult.AimTo understand how patients, families, and primary care clinicians view their role in cancer care and identify opportunities for cancer primary care research.MethodQualitative study embedded within a feasibility cluster randomised controlled trial of a primary care based needs assessment intervention. The Supportive Cancer Needs Survey (SCNS) was the main outcome. In-depth interviews with patients/carers and focus groups with primary care staff explored views on cancer care and trial participation. Data were recorded, transcribed verbatim, and analysed thematically by three independent researchers.ResultsFifteen cancer patients and three carers were interviewed and four focus groups (n = 11) were conducted. Three themes were generated satisfaction with current care; key time-points for improved cancer care; and information and research. Satisfaction with current care among patients was high in spite of 72% reporting at least one moderate-high unmet need at baseline. Most patients undergoing cancer treatment were unsure when to access primary care. Patients and carers highly valued proactive contact from their practice following diagnosis though this was uncommon. Post-oncology discharge was a key time-point for information needs and support for patients. Patients were reluctant to consider palliative care in spite of palliative care needs. Some felt therapeutic benefit from completing study measures.ConclusionPatients are satisfied with cancer primary care despite unmet needs. Palliative care is poorly understood by many who may benefit. Research participation may benefit some patients.
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Collins, Anna, Sue-Anne McLachlan, Mike Hill, Sue Collins, and Jennifer Philip. "A randomised phase II trial testing the acceptability and feasibility of a narrative approach to public health communication to increase community engagement with palliative care." Palliative Medicine 34, no. 8 (June 19, 2020): 1108–17. http://dx.doi.org/10.1177/0269216320932766.
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Background: Communities have limited understanding of palliative care, creating barriers to informed choice around consideration of a full range of care options in the event of serious illness. Few empirically tested interventions are available to educate community about palliative care, and ultimately improve timely access to these services. Aim: To test the acceptability (primary outcome), and feasibility of a narrative approach to public health communication seeking to improve attitudes to possible access to palliative care in the event of serious illness. Design: Randomised phase II trial with six parallel experimental conditions. Outcomes tested included measures of acceptability, feasibility and change in attitudes to possible access to palliative care post-intervention. Contrasts planned for exploratory testing included format, message content and narrator. Setting/participants: Community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups. Results: A narrative approach to public health communication was found to be acceptable to community members, and feasible to deliver online. Exploratory data suggested it immediately improved attitudes towards possible access to palliative care in the event of serious illness, with the narrative detailing a description of the evidence delivered by a healthcare professional appearing to be the most promising strategy. Conclusions: This study provides preliminary data to inform a future, longitudinal trial evaluating effectiveness and ultimately other evidence-based, public health approaches to improve community engagement with palliative care. Further studies are required to confirm the generalisability of findings to a broader representative sample and other settings including internationally.
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Yang, Grace M., Siqin Zhou, Zhizhen Xu, Stella SL Goh, Xia Zhu, Dawn QQ Chong, Daniel SW Tan, et al. "Comparing the effect of a consult model versus an integrated palliative care and medical oncology co-rounding model on health care utilization in an acute hospital – an open-label stepped-wedge cluster-randomized trial." Palliative Medicine 35, no. 8 (September 2021): 1578–89. http://dx.doi.org/10.1177/02692163211022957.
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Background: The benefit of specialist palliative care for cancer inpatients is established, but the best method to deliver specialist palliative care is unknown. Aim: To compare a consult model versus a co-rounding model; both provide the same content of specialist palliative care to individual patients but differ in the level of integration between palliative care and oncology clinicians. Design: An open-label, cluster-randomized trial with stepped-wedge design. The primary outcome was hospital length of stay; secondary outcomes were 30-day readmissions and access to specialist palliative care. ClinicalTrials.gov number NCT03330509. Setting/participants: Cancer patients admitted to the oncology inpatient service of an acute hospital in Singapore. Results: A total of 5681 admissions from December 2017 to July 2019 were included, of which 5295 involved stage 3-4 cancer and 1221 received specialist palliative care review. Admissions in the co-rounding model had a shorter hospital length of stay than those in the consult model by 0.70 days (95%CI −0.04 to 1.45, p = 0.065) for all admissions. In the sub-group of stage 3-4 cancer patients, the length of stay was 0.85 days shorter (95%CI 0.05–1.65, p = 0.038). In the sub-group of admissions that received specialist palliative care review, the length of stay was 2.62 days shorter (95%CI 0.63–4.61, p = 0.010). Hospital readmission within 30 days (OR1.03, 95%CI 0.79–1.35, p = 0.822) and access to specialist palliative care (OR1.19, 95%CI 0.90–1.58, p = 0.215) were similar between the consult and co-rounding models. Conclusions: The co-rounding model was associated with a shorter hospital length of stay. Readmissions within 30 days and access to specialist palliative care were similar.
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Chumbley, K. "139 What are the Barriers and Facilitators to Effective Advance Care Planning (ACP) in Residential Care Settings for Older People?" Age and Ageing 50, Supplement_1 (March 2021): i12—i42. http://dx.doi.org/10.1093/ageing/afab030.100.
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Abstract Introduction ACP is recommended for all people approaching the end of life but there is an inequality in access to ACP for care home residents. In North East Essex there has been an Electronic Palliative Care Coordination system (EPaCCS) in place for 6 years, currently without care home staff access capability. The aim of this study was to investigate ACP within care homes within this context. Method A qualitative study, with semi-structured interviews with fourteen senior care home staff from ten care homes across North East Essex. The interview transcripts underwent thematic analysis regarding facilitators and inhibitors to effective ACP. Results Four overarching themes were identified. These were relationships, communication, healthcare systems and attitudes. Care home staff considered ACP to be part of their role but perceived their work in this area to be separate from that performed by other health care professionals. The care home staff awareness of ACP done by other health care professionals was limited. Care home staff were aware of the EPaCCS, but only a minority perceived it to impact on residents care. All interviewees were keen to have access to the EPaCCS. Many of the facilitators and barriers to effective ACP in this locality are consistent with those found in prior literature. Having an EPaCCS within the area did not alleviate a perceived barrier of poor communication. Relationships between staff, residents, families and health care professionals remain the most common facilitators to ACP, with continuity of care from primary care, specialist palliative care and paperwork tools remaining important. Conclusion To overcome the inequity of access to ACP for residents in care homes interventions could be commissioned to address current barriers. These could include communication skills training, aligned primary care and community services as well as technological support for communication with family and access to EPaCCS.
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Santhosh-Kumar, Cheruppolil R., Deborah Gray, Stephanie Struve, Carol Huibregtse, and Qiaofang Chen. "New primary palliative care (PC) model for community cancer clinics (CCC)." Journal of Clinical Oncology 34, no. 26_suppl (October 9, 2016): 159. http://dx.doi.org/10.1200/jco.2016.34.26_suppl.159.
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159 Background: Our CCC serving a mixed rural/urban population is part of a large integrated healthcare system in Eastern WI. The closest PC specialist/team is 45 miles away at one of the tertiary care facilities. To fill this service gap we implemented a primary PC model. An initial outpatient palliative care family conference (OFC) and use of cancer nurse navigators (CNN)are hallmarks of this program. Methods: The VLCC, housed in a standalone facility is staffed by two medical oncologists and one radiation oncologist and has an infusion center and a full-fledged radiation oncology unit with support staff, including cancer nurse navigators, research nurses, social workers, a clinical psychologist, a pharmacist, a nutritionist, a therapy dog and a chaplain. Specialized pain management teams and services like acupuncture and hypnotherapy are readily available in the community. The patients have had access to multiple clinical trials since 2004. A team of a physician champion, a CNN and a social worker prioritized the needs and designed a program with support from system leadership. A CNN took additional training in PC. Funding from a research grant provided support for an occupational therapist (OT). Difficulties in communication was identified early as a barrier to integration of PC. OFCs were designed and conducted to discuss multiple domains of palliative care and referrals were made to different services. Pre and post enrollment surveys were administered. The following flow diagram was used (see Table). Results: In 2015, of 334 new patient visits for all stages of cancer, 32 were managed through the new PC model. Patient satisfaction scores were near 100%. Detailed methodology and data analyses will be presented. Conclusions: A successful new model of early integration of PC that is easily replicable in communities without access to specialist PC services is presented. [Table: see text]
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Tribett, Erika Lauren, Kavitha Ramchandran, Joshua Fronk, Judy Passaglia, Kelly Bugos, Manuela Kogon, Lori Klein, et al. "Palliative Care Always as a massive open online course (MOOC) to build primary palliative care in a global audience." Journal of Clinical Oncology 34, no. 26_suppl (October 9, 2016): 123. http://dx.doi.org/10.1200/jco.2016.34.26_suppl.123.
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123 Background: Primary palliative care (PC) is critical to improve access to PC from the point of diagnosis. Still, barriers exist to providing primary PC worldwide, including a lack of awareness, time, and training. Interactive online learning experiences can help overcome these. This project describes a massive open online course (MOOC)--Palliative Care Always--designed to build primary PC skills in a global audience. Methods: A team of PC providers and online instructional experts developed 12 modules that included: patient scenes, brief lectures, empathy exercises, and Google Hangout discussions. Course objectives included awareness of PC, practicing effective communication skills, basic symptom assessment and management. The target audience included oncology clinicians; secondary audience included patients and families. The MOOC launched January-April 2016. Participant engagement, satisfaction and self-reported knowledge were assessed through pre- and post-surveys. Multiple choice assessments captured knowledge gain. Follow-up assessments will be distributed three months post-MOOC. Results: By April 2016, the course reached 1,300 participants from 91 countries. 54% were from the US, followed by India, Brazil, and Canada. 76% were healthcare professionals, the majority being nurses (40%), physicians (19%) and social workers (13%). The remaining 24% included patient, caregivers, and others interested in PC. Top reasons for enrolling were interest in PC, personal growth and job relevance. On average, 27% of enrollees actively engaged week-over-week. Eighty-six percent of respondents were “very satisfied” with the amount learned, and over 50% cited learning “a great deal” in: communicating difficult news, goals of care, psychosocial and hospice care. 93% cited being “very likely” to recommend the course. Conclusions: Interactive MOOC experiences have the potential to build PC awareness, primary skills and global PC networks. Upcoming iterations will incorporate: accommodations for varying levels of PC knowledge; additional opportunities for interaction between participants, including social networks; blended learning; and evaluation of impact on practice and healthcare outcomes.
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Jess, Mia, Helle Timm, and Karin B. Dieperink. "Video consultations in palliative care: A systematic integrative review." Palliative Medicine 33, no. 8 (June 12, 2019): 942–58. http://dx.doi.org/10.1177/0269216319854938.
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Background: There is extensive need for palliative care worldwide, but access to care remains inadequate, especially for non-cancer patients. Video consultations are a promising tool in the provision of home-based palliative care, but an overview of evidence solely on video consultations in palliative care is lacking. Aim: To review and synthesize current evidence regarding the use of video consultations in general and specialized palliative care to various patient groups. Design: A systematic integrative review with a narrative synthesis was undertaken in accordance with PRISMA (2009) guidelines. PROSPERO #: CRD42018095383 Data sources: PubMed, Embase, CINAHL, and PsychINFO were searched for primary research articles published between 2005 and 2018. In addition, reference lists of included articles were hand searched. Results: The search resulted in 813 articles; 39 articles were included in the review, consisting of mixed methods ( n = 14), qualitative ( n = 10), quantitative ( n = 10), and case studies ( n = 5). The studies mainly focused on specialized palliative care to adult patients with cancer in high income countries. Through data analysis, six themes addressing advantages/disadvantages and facilitators/barriers were identified: (1) Redesign of care, (2) Communication, (3) User perceptions, (4) Technology, (5) Privacy issues, and (6) Economic implications. Conclusion: Using video technology in palliative care has both advantages and disadvantages. However, evidence beyond the focus on specialized palliative care and patients with cancer is limited. Future research should focus on how and when video consultations might replace in-person specialized palliative care and video consultations in general palliative care, in low and middle income countries; and involve patients with a non-cancer diagnosis.
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Williams-Reade, Jackie, Angela L. Lamson, Sharon M. Knight, Mark B. White, Sharon M. Ballard, and Priti P. Desai. "The clinical, operational, and financial worlds of neonatal palliative care: A focused ethnography." Palliative and Supportive Care 13, no. 2 (October 29, 2013): 179–86. http://dx.doi.org/10.1017/s1478951513000916.
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AbstractObjective:Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center.Method:In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families.Results:Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support.Significance of results:The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.
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Enguidanos, Susan, Anna Rahman, Deborah Hoe, and Kate Meyers. "PROVIDER-IDENTIFIED BARRIERS TO PALLIATIVE CARE FOR MEDICAID PATIENTS." Innovation in Aging 3, Supplement_1 (November 2019): S689. http://dx.doi.org/10.1093/geroni/igz038.2540.
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Abstract In January 2018, California enacted Senate Bill 1004, which requires Medicaid (or Medi-Cal in California) managed care providers to offer home-based palliative care (HBPC) to their seriously ill patients. Since then, enrollment in HBPC has been lower than projected, which means many across the state continue to suffer without the pain and symptom management and psychosocial support available from a palliative care team. This study elicited clinician-perceived barriers to access to HBPC by Medi-Cal patients. We conducted a qualitative study comprising 25 individual interviews with a range of healthcare leaders and practitioners. Interviews were audio-recorded and transcribed verbatim. Using a grounded theory approach, we analyzed transcripts to determine primary themes. Our findings identified a myriad of access barriers to HBPC for the Medi-Cal population, including lack of physician knowledge about HBPC programs and benefits, a physician office structure that hampers the provision of HBPC education (i.e., one physician per office), cultural and language barriers among both physicians and patients, physicians’ lack of time, and competing demands on physicians. Providers also identified patient-related barriers, including cultural mismatch between HBPC providers and patients, trust issues related to the health-care system, and the complex challenges facing some patients such as lack of adequate and safe housing, behavioral health problems, and limited access to services that meet basic needs. These findings underscore the need for multiple approaches to increase physician education and awareness of HBPC and HBPC Medi-Cal benefits, develop culturally appropriate HBPC services, and develop programs that improve patients’ palliative care health literacy.
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Engel, A. "Cancer Council NSW - Policy and Advocacy: “I Care For Palliative Care” Campaign to Increase Government Investment in Specialist Palliative Care Services." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 172s. http://dx.doi.org/10.1200/jgo.18.50500.
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Background and context: I Care for Palliative Care Campaign was developed and delivered by the Cancer Council NSW between November 2015 and July 2017. This advocacy campaign was developed in recognition of the fact that the state had fewer palliative physicians and palliative care nurses than were needed to meet the palliative care demands of the NSW community. This meant that some people with life-limiting cancer were being denied quality of life and were unable to die in the place of their choosing. Moreover, Aboriginal people remained disadvantaged by limited access to specialist palliative care that fits with their community values, beliefs, rituals, heritage and place. Aim: The primary aim of the campaign was to secure additional funding from the NSW Government for an additional 10 FTE palliative physician positions; an extra 129 FTE palliative care nurse positions; and provision of culturally-appropriate specialist palliative care services to Aboriginal people. Strategy/Tactics: Various tactics were used, including collection and sharing of engaging community stories via media and online channels, mobilizing community support via training and events, and targeted engagement of key decision-makers and members of parliament (MPs), which took into consideration marginal electorates, personal experiences with cancer, and geography, noting the issue disproportionally impacts regional and rural communities. An online and offline “pledge” activity was also used, providing both the public and MPs with an opportunity to support the campaign. Program/Policy process: Meetings, the pledge activity, collection and presentation of stories and community-events were all incorporated into a program of activities over the campaign period to engage decision-makers and ultimately influence the policy-making process. Outcomes: An independent qualitative evaluation confirmed that the campaign was undoubtedly a success. It noted that the campaign created an environment in which the NSW government made a historic decision to provide an additional $100 million in funding for palliative care services over four years. Without the campaign, palliative care could well have lost out to other healthcare and government spending priorities. What was learned: The campaign confirmed the power of personal stories as an effective campaign tactic to influence decision-makers. Empowering volunteers to generate local media coverage also resulted in significantly greater coverage for the campaign. The “pledge” activity for MPs was also an effective tactic that brought together the issue, the politician and our brand. Aspects to be improved include simplifying our policy ask, evaluating the resources we invest in key decision makers versus less influential MPs, and assessing how we better integrate political context and political experts into our campaign planning and governance.
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Bazargan, Mohsen, Sharon Cobb, Shervin Assari, and Lucy W. Kibe. "Awareness of Palliative Care, Hospice Care, and Advance Directives in a Racially and Ethnically Diverse Sample of California Adults." American Journal of Hospice and Palliative Medicine® 38, no. 6 (February 4, 2021): 601–9. http://dx.doi.org/10.1177/1049909121991522.
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Background: Numerous studies have documented multilevel racial inequalities in health care utilization, medical treatment, and quality of care in minority populations in the United States. Palliative care for people with serious illness and hospice services for people approaching the end of life are no exception. It is also well established that Hispanics and non-Hispanic Blacks are more likely than non-Hispanic Whites to have less knowledge about advance care planning and directives, hospice, and palliative care. Both qualitative and quantitative research has identified lack of awareness of palliative and hospice services as one of the major factors contributing to the underuse of these services by minority populations. However, an insufficient number of racial/ethnic comparative studies have been conducted to examine associations among various independent factors in relation to awareness of end-of-life, palliative care and advance care planning and directives. Aims: The main objective of this analysis was to examine correlates of awareness of palliative, hospice care and advance directives in a racially and ethnically diverse large sample of California adults. Methods: This cross-sectional study includes 2,328 adults: Hispanics (31%); non-Hispanic Blacks (30%); and non-Hispanic Whites (39%) from the Survey of California Adults on Serious Illness and End-of-Life 2019. Using multivariate analysis, we adjusted for demographic and socio-economic variables while estimating the potential independent impact of health status, lack of primary care providers, and recent experiences of participants with a family member with serious illnesses. Results: Hispanic and non-Hispanic Black participants are far less likely to report that they have heard about palliative and hospice care and advance directives than their non-Hispanic White counterparts. In this study, 75%, 74%, and 49% of Hispanics, non-Hispanic Blacks, and non-Hispanic White participants, respectively, claimed that they have never heard about palliative care. Multivariate analysis of data show gender, age, education, and income all significantly were associated with awareness. Furthermore, being engaged with decision making for a loved one with serious illnesses and having a primary care provider were associated with awareness of palliative care and advance directives. Discussion: Our findings reveal that lack of awareness of hospice and palliative care and advance directives among California adults is largely influenced by race and ethnicity. In addition, demographic and socio-economic variables, health status, access to primary care providers, and having informal care giving experience were all independently associated with awareness of advance directives and palliative and hospice care. These effects are complex, which may be attributed to various historical, social, and cultural mechanisms at the individual, community, and organizational levels. A large number of factors should be addressed in order to increase knowledge and awareness of end-of-life and palliative care as well as completion of advance directives and planning. The results of this study may guide the design of multi-level community and theoretically-based awareness and training models that enhance awareness of palliative care, hospice care, and advance directives among minority populations.
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Kaba, Mirgissa, Marlieke de Fouw, Kalkidan Solomon Deribe, Ephrem Abathun, Alexander Arnold Willem Peters, and Jogchum Jan Beltman. "Palliative care needs and preferences of female patients and their caregivers in Ethiopia: A rapid program evaluation in Addis Ababa and Sidama zone." PLOS ONE 16, no. 4 (April 22, 2021): e0248738. http://dx.doi.org/10.1371/journal.pone.0248738.
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Introduction In Ethiopia there is an extensive unmet need for palliative care, while the burden of non-communicable diseases and cancer is increasing. This study aimed to explore palliative care needs and preferences of patients, their caregivers, and the perspective of stakeholders on service provision in palliative programs for women, mostly affected by cervical cancer and breast cancer. Methods A rapid program evaluation using a qualitative study approach was conducted in three home-based palliative care programs in Addis Ababa and Yirgalem town, Ethiopia. Female patients enrolled in the programs, and their primary caregivers were interviewed on palliative care needs, preferences and service provision. We explored the views of purposely selected stakeholders on the organization of palliative care and its challenges. Audio-taped data was transcribed verbatim and translated into English and an inductive thematic analysis was applied. Descriptive analyses were used to label physical signs and symptoms using palliative outcome scale score. Results A total of 77 interviews (34 patients, 12 primary caregivers, 15 voluntary caregivers, 16 stakeholders) were conducted. The main physical complaints were moderate to severe pain (70.6%), followed by anorexia (50.0%), insomnia, nausea and vomiting (41.2%). Social interaction and daily activities were hampered by the patients’ condition. Both patients and caregivers reported that programs focus most on treatment of symptoms, with limited psychosocial, emotional, spiritual and economic support. Lack of organizational structures and policy directions limit the collaboration between stakeholders and the availability of holistic home-based palliative care services. Conclusions Although female patients and caregivers appreciated the palliative care and support provided, the existing services did not cover all needs. Pain management and all other needed supports were lacking. Multi-sectorial collaboration with active involvement of community-based structures is needed to improve quality of care and access to holistic palliative care services.
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Mitchell, Sarah, Victoria Maynard, Victoria Lyons, Nicholas Jones, and Clare Gardiner. "The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics: A rapid review to inform practice and service delivery during the COVID-19 pandemic." Palliative Medicine 34, no. 9 (July 31, 2020): 1182–92. http://dx.doi.org/10.1177/0269216320947623.
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Background: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control. Aim: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics. Design: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence. Data sources: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020. Results: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to ‘systems’ (community providers feeling disadvantaged in terms of receiving timely information and protocols), ‘space’ (recognised need for more care in the community), ‘staff’ (training needs and resilience) and ‘stuff’ (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations). Conclusions: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.
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Kananga, A. Mubeneshayi. "The Integration of Palliative Care in DR Congo “A Model Of Sustainability”: A Field Study." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 171s. http://dx.doi.org/10.1200/jgo.18.36900.
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Background and context: In DR Congo, many cancer patients in the terminal phase of their condition have minimal access to palliative care. There is a combined effect of poverty, the deterioration of the health system and the absence of a well-defined national policy on palliative care. Patients are for the most part abandoned to the care of inexperienced family members. Driven by the fact that the number of palliative patients has been increasing steadily over the past five years, the Palliafamilli association and its partners have taken leadership in the fight for palliative care. The major issue that blocks palliative care in RD Congo is the lack of knowledge about palliative care both in the population and even in health professionals. Most patients are treated at home with strong family involvement in many aspects of care. Aim: To promote good health practices at the community level and equip them with the knowledge and means to prevent their health problems, with a focus on palliative care and to contribute to the implementation of the Strategy for Strengthening the Health System of DR Congo by facilitating a program of access to palliative care for the entire Congolese population. Strategy/Tactics: During the last 7 years, we have organized conferences, congresses, various training sessions on pain management, sensitization activities, capacity building courses and advocacy activities within the Ministry of Health for national palliative care guidelines. Program/Policy process: - The organization of two International Congress of Palliative Care in Kinshasa in April 2013 (550 participants) and September 2015 (700 participants) - Training of 3 health professionals on the palliative approach in Uganda (2013) - Participation at the Second Francophone Palliative Care Congress in Montreal 2013 - A palliative care training course at the University of Kinshasa in 2015 (115 participants) - The organization of the International Colloquium of Pediatric Palliative Care in Kinshasa in 2015 - Participation in the 4th International Francophone Congress of Palliative Care in Geneva (2017) - Participating in the drafting of national guidelines for palliative care within the Ministry of Health (2017) - Capacity building for two members of PalliaFamilli thanks to the scholarship offered by the UICC. What was learned: In DR Congo, palliative care and pain relief require a cross-cutting approach, as resources are limited, many people are in need of care, and there are few nurses and doctors empowered to provide care. An effective approach is to involve community or volunteer caregivers supervised by health professionals, and Palliafamilli is successful due in its multidisciplinary and multisectoral approach, with adaptation to cultural, social and economic specificities and its integration with existing health systems, focusing on primary health care and community and home care.
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Szekendi, Marilyn K., Jocelyn Vaughn, Beth McLaughlin, Carol Mulvenon, Karin Porter-Williamson, Chris Sydenstricker, and Mary Williamson. "Integrating Palliative Care to Promote Earlier Conversations and to Increase the Skill and Comfort of Nonpalliative Care Clinicians: Lessons Learned From an Interventional Field Trial." American Journal of Hospice and Palliative Medicine® 35, no. 1 (April 7, 2017): 132–37. http://dx.doi.org/10.1177/1049909117696027.
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While the uptake of palliative care in the United States is steadily improving, there continues to be a gap in which many patients are not offered care that explicitly elicits and respects their personal wishes. This is due in part to a mismatch of supply and demand; the number of seriously ill individuals far exceeds the workload capacities of palliative care specialty providers. We conducted a field trial of an intervention designed to promote the identification of seriously ill patients appropriate for a discussion of their goals of care and to advance the role of nonpalliative care clinicians by enhancing their knowledge of and comfort with primary palliative care skills. At 3 large Midwestern academic medical centers, a palliative care physician or nurse clinician embedded with a selected nonpalliative care service line or unit on a regularly scheduled basis for up to 6 months. Using agreed-upon criteria, patients were identified as being appropriate for a goals of care conversation; conversations with those patients and/or their families were then conducted with the palliative care specialist providing education, coaching, and mentoring to the nonpalliative care clinician, when possible. All of the sites increased the presence of palliative care within the selected service line or unit, and the nonpalliative care clinicians reported increased comfort and skill at conducting goals of care conversations. This intervention is a first step toward increasing patients’ access to palliative care to alleviate distress and to more consistently deliver care that honors patient and family preferences.
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Sampey, Libby, Anne M. Finucane, and Juliet Spiller. "Shared electronic care coordination systems following referral to hospice." British Journal of Community Nursing 26, no. 2 (February 2, 2021): 58–62. http://dx.doi.org/10.12968/bjcn.2021.26.2.58.
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In Scotland, the Key Information Summary (KIS) enables health providers to access key patient information to guide decision-making out-of-hours. KISs are generated in primary care and rely on information from other teams, such as community specialist palliative care teams (CSPCTs), to keep them up-to-date. This study involved a service evaluation consisting of case note reviews of new referrals to a CSPCT and semi-structured interviews with palliative care community nurse specialists (CNSs) regarding their perspectives on KISs. Some 44 case notes were examined, and 77% of patients had a KIS on CSPCT referral. One-month post-referral, all those re-examined (n=17) had a KIS, and 59% KISs had been updated following CNS assessments. CNSs cited anticipatory care planning (ACP) as the most useful aspect of KIS, and the majority of CNSs said they would appreciate KIS editing access. A system allowing CNSs to update KISs would be acceptable to CNSs, as it could facilitate care co-ordination and potentially improve comprehensiveness of ACP information held in KISs.
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Gorey, Kevin M., Emma Bartfay, Sindu M. Kanjeekal, Frances C. Wright, Caroline Hamm, Isaac N. Luginaah, Guangyong Zou, Eric J. Holowaty, Nancy L. Richter, and Madhan K. Balagurusamy. "Palliative chemotherapy among people living in poverty with metastasised colon cancer: facilitation by primary care and health insurance." BMJ Supportive & Palliative Care 9, no. 3 (August 23, 2016): e24-e24. http://dx.doi.org/10.1136/bmjspcare-2015-001035.
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BackgroundMany Americans with metastasised colon cancer do not receive indicated palliative chemotherapy. We examined the effects of health insurance and physician supplies on such chemotherapy in California.MethodsWe analysed registry data for 1199 people with metastasised colon cancer diagnosed between 1996 and 2000 and followed for 1 year. We obtained data on health insurance, census tract-based socioeconomic status and county-level physician supplies. Poor neighbourhoods were oversampled and the criterion was receipt of chemotherapy. Effects were described with rate ratios (RR) and tested with logistic regression models.ResultsPalliative chemotherapy was received by less than half of the participants (45%). Facilitating effects of primary care (RR=1.23) and health insurance (RR=1.14) as well as an impeding effect of specialised care (RR=0.86) were observed. Primary care physician (PCP) supply took precedence. Adjusting for poverty, PCP supply was the only significant and strong predictor of chemotherapy (OR=1.62, 95% CI 1.02 to 2.56). The threshold for this primary care advantage was realised in communities with 8.5 or more PCPs per 10 000 inhabitants. Only 10% of participants lived in such well-supplied communities.ConclusionsThis study's observations of facilitating effects of primary care and health insurance on palliative chemotherapy for metastasised colon cancer clearly suggested a way to maximise Affordable Care Act (ACA) protections. Strengthening America's system of primary care will probably be the best way to ensure that the ACA's full benefits are realised. Such would go a long way towards facilitating access to palliative care.
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Armstrong, Megan, Caroline Shulman, Briony Hudson, Niamh Brophy, Julian Daley, Nigel Hewett, and Patrick Stone. "The benefits and challenges of embedding specialist palliative care teams within homeless hostels to enhance support and learning: Perspectives from palliative care teams and hostel staff." Palliative Medicine 35, no. 6 (March 29, 2021): 1202–14. http://dx.doi.org/10.1177/02692163211006318.
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Background: People residing in UK homeless hostels experience extremely high rates of multi-morbidity, frailty and age-related conditions at a young age. However, they seldom receive palliative care with the burden of support falling to hostel staff. Aim: To evaluate a model embedding palliative specialists, trained as ‘homelessness champions’, into hostels for two half-days a month to provide support to staff and residents and facilitate a multidisciplinary approach to care. Design: An exploratory qualitative design. Setting/participants: Four homeless hostels in London, UK, including nine hostel managers/support staff and seven palliative care specialists (five nurses and two social workers). Results: Benefits to introducing the model included: developing partnership working between hostel staff and palliative care specialists, developing a holistic palliative ethos within the hostels and improving how hostel staff seek support and connect with local external services. Challenges to implementation included limited time and resources, and barriers related to primary care. Conclusion: This is the first evaluation of embedding palliative care specialists within homeless hostels. Inequity in health and social care access was highlighted with evidence of benefit of this additional support for both hostel staff and residents. Considering COVID-19, future research should explore remote ways of working including providing in-reach support to homelessness services from a range of services and organisations.
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Bickel, Kathleen Elizabeth, Kristen K. McNiff, Mary K. Buss, Arif Kamal, Dale Lupu, Amy Pickar Abernethy, Michael S. Broder, et al. "Defining high-quality palliative care in oncology practice: An ASCO/AAHPM Guidance Statement." Journal of Clinical Oncology 33, no. 29_suppl (October 10, 2015): 108. http://dx.doi.org/10.1200/jco.2015.33.29_suppl.108.
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108 Background: When integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to subspecialty palliative medicine for referral. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices. Methods: An expert steering committee developed a list of 966 palliative care service items, divided into nine domains, each describing an aspect of palliative care delivery for patients with advanced cancer. Using a modified Delphi methodology, 31 multi-disciplinary panelists ranked each service item according to importance, feasibility and scope. Results: Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); Communication and Shared Decision-Making (79%); and Care Planning (78%). Lowest proportions were in: Spiritual and Cultural Assessment and Management (35%) and Psychosocial Assessment and Management (39%). In the largest domain, Symptom Assessment and Management, there was consensus that all symptoms should be assessed and managed at a basic level with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea and pain. Under the domain of Appropriate Palliative Care and Hospice Referral, there was consensus that oncology practices should be able to describe the difference between palliative care and hospice to patients and refer patients with an expected survival of under 3 months or poor performance status (Zubrod 3-4) to hospice. Conclusions: This statement describes high-quality palliative care for patients with advanced cancer or high symptom burden, as delivered by oncology practices. Oncology providers wishing to enhance palliative care delivery may find the guidance useful to inform operational changes and quality improvement efforts.
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Morris, Alison, Erika L. Tribett, Sandy Tun, Marcy Winget, Douglas W. Blayney, and Kavitha Ramchandran. "From PRO screening to improved wellness: A nurse-led intervention." Journal of Clinical Oncology 33, no. 29_suppl (October 10, 2015): 72. http://dx.doi.org/10.1200/jco.2015.33.29_suppl.72.
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72 Background: Emotional and physical distress in cancer patients is underreported and undertreated. In effort to address this, the Quality Oncology Practice Initiative (QOPI) requires patients to be screened for emotional well-being and pain by their second oncology visit. This project details one cancer center’s quality improvement initiative to: (1) utilize patient reported outcomes (PRO) screening to identify patient distress, (2) develop adaptive nurse-led algorithms to assess and intervene for unmet needs. Methods: In June 2015, we launched electronic collection of PROs using the Patient Reported Outcome Measurement Instrument System (PROMIS) global screen. Screening is completed via EMR patient portal prior to first return visit and 30-day intervals thereafter. A nurse-led algorithm categorizing distress was developed with evidence-based clinical pathways for care. Pathways optimize primary palliative care and referrals to specialist palliative services when appropriate. In August 2015, we will randomize four nurse navigators in gynecologic oncology to test the algorithm and make adaptations for scaling cancer center wide. We will assess the percent of patients screening positive for distress and the rate of primary palliative care interventions (e.g., symptom management and psychosocial support). We will also assess rate of referral to specialist palliative teams. Finally, we will interview a subset of patients to compare self-reported need, clinical management of needs, and whether needs were managed to the patient’s satisfaction. Results: We expect to report on adoption and adaptation of the algorithm for disease-specific groups. We will also report rates of primary palliative care interventions, referrals to specialist palliative care and PROs. Conclusions: Standard screening using PROs and clinical care pathways may foster early identification and management of patient’s psychosocial and physical needs. Support for oncology nurses to lead assessment and connect patients with resources is an opportunity to incorporate primary palliative care into oncology practice. The use of structured, adaptive, novel algorithms is a promising approach to meet patient needs and improve access to supportive resources.