Developing primary palliative care: community palliative care services are not sufficiently funded.
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ABSTRACT:
SUBMITTER: Levack P
PROVIDER: S-EPMC539883 | biostudies-literature | 2005 Jan
REPOSITORIES: biostudies-literature
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Developing primary palliative care: community palliative care services are not sufficiently funded.
Levack Pam P Dryden Helen H Paterson Fiona F
BMJ (Clinical research ed.) 20050101 7481
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Project description: Not available
| S-EPMC554951 | biostudies-literature
Project description:Background: Approximately 40 million people in need of palliative care worldwide, while 80% of them live in low- and middle-income countries. Kazakhstan, a low-to middle-income country with a reforming healthcare system, is committed to improving quality and accessibility of care for its 100,000 terminal patients in need of palliative care. Policy Options and Recommendations: To join the group of countries where palliative care is available, accessible, and affordable, Kazakhstan must integrate palliative services into the mainstream healthcare system at all levels, from primary healthcare to hospices, and from major cities to remote villages. Based on the evidence thoroughly collected directly from the Ministry of Health, authors propose a feasible set of recommendations regarding palliative policy, pain relief, infrastructure, workforce, and education, which could be implemented in LMICs beyond Kazakhstan. Conclusion: This study presents an analysis of challenges, recent developments, and needs of palliative care in Kazakhstan, including funding, policy, workforce, education, and infrastructure, providing an evidence base and recommendations for future development of palliative care in Kazakhstan and in other LMICs.
| S-EPMC10476099 | biostudies-literature
Project description:BackgroundThe need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services.AimTo gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care.DesignQualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group.ParticipantsGeneral practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK.ResultsGeneral practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care.ConclusionsTo sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care.
| S-EPMC9720421 | biostudies-literature
Project description:BackgroundIn order to provide responsive, individualised and personalised care, there is now greater engagement with patients, families and carers in designing health services. Out-of-hours care is an essential component of community palliative care. However, little is known about how patients, families and carers have been involved in the planning and design of these services.AimTo systematically search and review the research literature that reports on how out-of-hours palliative care services are provided in the community and to identify the extent to which the principles of co-design have been used to inform the planning and design of these services.DesignSystematic literature search and review.Data sourcesA systematic search for published research papers from seven databases was conducted in MEDLINE, PsycINFO, Embase, Emcare, PubMed, CINAHL and Web of Science, from January 2010 and December 2021. Reference list searches of included papers were undertaken to source additional relevant literature. A manifest content analysis was used to analyse the data.ResultsA total of 77 papers were included. The majority of out-of-hours services in the community were provided by primary care services. The review found little evidence that patients, families or carers were involved in the planning or development of out-of-hours services.ConclusionIncorporating patients, families and carers priorities and preferences in the planning and designing of out-of-hours palliative care service is needed for service providers to deliver care that is more patient-centred. Adopting the principles of co-design may improve how out-of-hours care scan be delivered.
| S-EPMC9843546 | biostudies-literature
Project description:BackgroundGlobally, more than 97% of children needing palliative care reside in low- and middle-income countries, where there is very limited access to palliative care. Several community-based palliative care programs focused on adults, have been described in resource limited settings, suggesting a simple and low-cost approach to providing palliative care. The implementation of community-based palliative care for children has not previously been described.ContextThis community case study describes the implementation of an innovative model of community-based palliative care program in and urban informal settlement, (Korail Slum, Bangladesh). The program is led by a local government hospital, with experience in community-based palliative care, in partnership with the local community.ProblemChildren with serious conditions in an urban unformal settlement do not have access to health services which address their medical, psychosocial and spiritual needs. This gap leads to a significant burden of preventable suffering for them and their families.SolutionA community-based palliative care program was implemented, which includes home care by trained community health workers, with support and supervision from palliative care nurses and physicians. The program's objective is to provide effective symptom management, clear communication about the child's condition with parents, and psychosocial support including support for basic needs. The program was free for families including medications, medical equipment, physiotherapy, and speech therapy. The program was monitored through regular assessments of quality of life using standardized tools (PedsQL Family Impact Module), as well as interviews and focus group discussions.Conclusion and lessons learnedA model of community-based palliative care for children can be implemented in an urban informal settlement. Program effectiveness is enhanced by community health workers who share language, culture, and life-experiences with the individuals they serve. Partnerships with local health care facilities and community groups strengthen the program's sustainability. Ensuring financial sustainability remains a challenge.
| S-EPMC10034310 | biostudies-literature
Project description:PURPOSE:To evaluate whether the early identification of patients who may benefit from palliative care impacts on the use of palliative, community and acute-based care services. METHODS:Between 2014 and 2017, physicians from eight sites were encouraged to systematically identify patients who were likely to die within one year and would were thought to benefit from early palliative care. Patients in the INTEGRATE Intervention Group were 1:1 matched to controls selected from provincial healthcare administrative data using propensity score-matching. The use of palliative care, community-based care services (home care, physician home visit, and outpatient opioid use) and acute care (emergency department, hospitalization) was each evaluated within one year after the date of identification. The hazard ratio (HR) in the Intervention Group was calculated for each outcome. RESULTS:Of the 1,185 patients in the Intervention Group, 951 (80.3%) used palliative care services during follow-up, compared to 739 (62.4%) among 1,185 patients in the Control Group [HR of 1.69 (95% CI 1.56 to 1.82)]. The Intervention Group also had higher proportions of patients who used home care [81.4% vs. 55.2%; HR 2.07 (95% CI 1.89 to 2.27)], had physician home visits [35.5% vs. 23.7%; HR 1.63 (95% CI 1.46 to 1.92)] or had increased outpatient opioid use [64.3% vs. 52.1%); HR 1.43 (95% CI 1.30 to 1.57]. The Intervention Group was also more likely to have a hospitalization that was not primarily focused on palliative care (1.42 (95% CI 1.28 to 1.58)) and an unplanned emergency department visit for non-palliative care purpose (1.47 (95% CI 1.32 to 1.64)). CONCLUSION:Physicians actively identifying patients who would benefit from palliative care resulted in increased use of palliative and community-based care services, but also increased use of acute care services.
| S-EPMC6994244 | biostudies-literature
Project description:Palliative care (PC) benefits patients with serious illness including end-stage liver disease (ESLD). As part of a cluster randomized trial, hepatologists were trained to deliver primary palliative care to patients with ESLD using an online course, Palliative Care Always: Hepatology (PCA:Hep). Here we present a multimethod formative evaluation (feasibility, knowledge acquisition, self-efficacy, and practice patterns) of PCA:Hep. Feasibility was measured by completion of coursework and achieving a course grade of >80%. Knowledge acquisition was measured through assessments before and throughout the course. Pre/post-course surveys were conducted to determine self-efficacy and practice patterns. The hepatologists (n = 39) enrolled in a 12-week online course and spent 1-3 hours on the course weekly. The course was determined to be feasible as 97% successfully completed the course and 100% passed. The course was acceptable to participants; 91.7 % reported a positive course experience and satisfaction with knowledge gained (91.6%). The pre/post knowledge assessment showed an improvement of 6.0% (pre 85.9% to post 91.9%, 95% CI [2.8, 9.2], P = 0.001). Self-efficacy increased significantly (P < 0.001) in psychological symptom management, hospice, and psychosocial support. A year after training, over 80% of the hepatologists reported integrating a variety of PC skills into routine patient care. Conclusion: PCA:Hep is feasible, acceptable, and improves learner knowledge and confidence in palliative care skills. This is a viable method to teach primary PC skills to specialists caring for patients with ESLD.
| S-EPMC8948550 | biostudies-literature
Project description:Primary palliative care is a fundamental aspect of high-quality care for patients with a serious illness such as dementia. The clinician caring for a patient and family suffering with dementia can provide primary palliative care in numerous ways. Perhaps the most important aspects are high quality communication while sharing a diagnosis, counseling the patient through progression of illness and prognostication, and referral to hospice when appropriate. COVID-19 presents additional risks of intensive care requirement and mortality which we must help patients and families navigate. Throughout all of these discussions, the astute clinician must monitor the patient's decision making capacity and balance respect for autonomy with protection against uninformed consent. Excellent primary palliative care also involves discussion of deprescribing medications of uncertain benefit such as long term use of cholinesterase inhibitors and memantine and being vigilant in the monitoring of pain with its relationship to behavioral disturbance in patients with dementia. Clinicians should follow a standardized approach to pain management in this vulnerable population. Caregiver burden is high for patients with dementia and comprehensive care should also address this burden and implement reduction strategies. When these aspects of care are particularly complex or initial managements strategies fall short, palliative care specialists can be an important additional resource not only for the patient and family, but for the care team struggling to guide the way through a disease with innumerable challenges.
| S-EPMC8791082 | biostudies-literature
Project description:IntroductionFederal recommendations for providing quality family planning services were published in 2014 and included preconception care (PCC). This paper aims to describe the prevalence of PCC delivery among publicly funded clinics, prior to the recommendations.MethodsPrevalence of providing occasional or frequent PCC in the last 3 months and having written protocols for recommended PCC screenings were estimated in 2015 using survey data collected from a nationally representative sample of publicly funded clinic administrators (2013-2014, N=1,615). Analyses included examination of differential distributions of outcomes by clinic characteristics (p<0.05) and multivariable regression.ResultsPrevalence of occasional or frequent PCC delivery was 81% for women and 38% for men. The percentage of clinics with written protocols for specific PCC screenings ranged from 74% to 88% (women) and 66% to 83% (men). Prevalence of having written protocols for all PCC screenings was 29% for women and 22% for men. Characteristics negatively associated with having written protocols for all PCC screenings for women and men (respectively) were as follows: not receiving Title X funding (adjusted prevalence ratio [APR]=0.6, 95% CI=0.50, 0.76; APR=0.6, 95% CI=0.47, 0.77) and being a community health center (APR=0.5, 95% CI=0.37, 0.72; APR=0.5, 95% CI=0.30, 0.67); health department (APR=0.7, 95% CI=0.61, 0.87; APR=0.6, 95% CI=0.49, 0.76); or hospital/other (APR=0.6, 95% CI=0.50, 0.79; APR=0.6, 95% CI=0.43, 0.75) (versus Planned Parenthood).ConclusionsProvision of PCC appears to differ by clinic characteristics and by interpretation of the phrase "preconception care," suggesting opportunities for education and improvement.
| S-EPMC5379123 | biostudies-literature
Project description:ObjectivesThe aim of this study was to map existing emergency medical services (EMS) and palliative care literature by answering the question, what literature exists concerning EMS and palliative care? The sub-questions regarding this literature were, (1) what types of literature exist?, (2) what are the key findings? and (3) what knowledge gaps are present?DesignA scoping review of literature was performed with an a priori search strategy.Data sourcesMEDLINE via Pubmed, Web of Science, CINAHL, Embase via Scopus, PsycINFO, the University of Cape Town Thesis Repository and Google Scholar were searched.Eligibility criteria for selecting studiesEmpirical, English studies involving human populations published between 1 January 2000 and 24 November 2022 concerning EMS and palliative care were included.Data extraction and synthesisTwo independent reviewers screened titles, abstracts and full texts for inclusion. Extracted data underwent descriptive content analysis and were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews guidelines.ResultsIn total, 10 725 articles were identified. Following title and abstract screening, 10 634 studies were excluded. A further 35 studies were excluded on full-text screening. The remaining 56 articles were included for review. Four predominant domains arose from included studies: (1) EMS' palliative care role, (2) challenges faced by EMS in palliative situations, (3) EMS and palliative care integration benefits and (4) proposed recommendations for EMS and palliative care integration.ConclusionEMS have a role to play in out-of-hospital palliative care, however, many challenges must be overcome. EMS provider education, collaboration between EMS and palliative systems, creation of EMS palliative care guidelines/protocols, creation of specialised out-of-hospital palliative care teams and further research have been recommended as solutions. Future research should focus on the prioritisation, implementation and effectiveness of these solutions in various contexts.
| S-EPMC10030966 | biostudies-literature