Provision Of Palliative Care Services Research Articles

Palliative care service provision and use among 2SLGBTQIA + individuals: a scoping review

ContextHealth inequities exist across the healthcare continuum, significantly impacting 2SLGBTQIA + individuals. Palliative care presents unique challenges for sexual and gender minorities due to socio-cultural, psychological, and systemic barriers. The objective of this scoping review was to synthesize existing research on palliative care use among 2SLGBTQIA + individuals and identify common themes in the literature.MethodsA literature review was conducted, focusing on articles published between 2010 and 2023 from the PubMed and CINAHL databases. Arksey and O'Malley's methodological framework for scoping reviews was applied to guide the review process.ResultsA total of 31 studies were identified. A significant portion of the research originated in North America, with little research from outside the USA. Palliative care and end-of-life care were most used to describe care, though these terms were often not clearly defined. All studies included a focus on sexual and gender minorities, but there was considerable variation in the terminology used and a noticeable paucity of literature specifically addressing the needs of transgender and gender non-conforming individuals, or use of an intersectional approach in analysis. Key themes identified in the literature include discrimination in palliative care settings, disenfranchised grief experienced by care partners, and a lack of training in palliative care settings concerning the unique needs of 2SLGBTQIA + people utilizing palliative care services.ConclusionsPeople identifying as 2SLGBTQIA + experience unique inequities in accessing and using palliative care services. To address these challenges, future initiatives should focus on developing identity-affirming palliative care settings, enhancing respect and support for care partners and found family, and ensuring healthcare providers are properly educated to provide care to this community. Future research is also needed that considers more diverse samples, as well as the impact of intersecting identities on the specific needs and challenges they face at end-of-life.

Assessment of needs, challenges, and re-design considerations for culturally sensitive provision and delivery of palliative care supports and services for older adults who prefer to age and die in place in diverse India.

As the global older adult population continues to grow, challenges related to managing multiple chronic conditions (MCCs) or multimorbidity underscore the growing need for palliative care. Palliative care preferences and needs vary significantly based on context, location, and culture. As a result, there is a need for more clarity on what constitutes palliative care in diverse settings. Our objective was to present an international perspective on palliative care in India, a culturally diverse and large ancient Eastern middle-income country. In this narrative review article, we considered three questions when re-designing palliative care for older adults aging-in-place in India: (I) what are the needs for palliative care for persons and their families? (II) Which palliative care domains are essential in assessing improvements in the quality of life (QoL)? (III) What patientreported measures are essential considerations for palliative care? To address these questions, we provide recommendations based on the following key domains: social, behavioral, psychological, cultural, spiritual, medical, bereavement, legal, and economic. Using an established and widely reported conceptual framework on aging and health disparities, we provide how these domains map across multiple levels of influence, such as individual or family members, community, institutions, and health systems for achieving the desired QoL. For greater adoption, reach, and accessibility across diverse India, we conclude palliative care must be carefully and systematically re-designed to be culturally appropriate and community-focused, incorporating traditions, individual preferences, language(s), supports and services from educational and health institutions, community organizations and the government. In addition, national government insurance schemes such as the Ayushman Bharat Yojna can include explicit provisions for palliative care so that it is affordable to all, regardless of ability to pay. In summary, our considerations for incorporating palliative care domains to care of whole person and their families, and provision of supports of services from an array of stakeholders broadly apply to culturally diverse older adults aging in place in India and around the globe who prefer to age and die in place.

Gender and Racial Differences in the Provision of Palliative Care Services Among Critically ill Necrotizing Fasciitis and Septic Shock Geriatric Patients: Analysis of a Nationwide Database in the United States.

Introduction: Necrotizing fasciitis (NF) and sepsis shock (SS) are both severe and life-threatening conditions requiring specialized care, including palliative care (PC), to optimize comfort. However, data on the utilization of PC in this population, including racial and gender differences, are limited. Methods: We used the National Inpatient Sample (NIS) database from 2016 to 2020 to extract data on patients with NF and SS as well as PC utilization. Chi-squared tests and multivariate linear regression models were utilized to analyze relationships between categorical and continuous variables, respectively. Multivariable logistic regression was used to determine adjusted odds ratios (aORs) and 95% confidence intervals (CI) for various outcomes among various gender and racial groups. Mann-Kendall trend test was used to assess mortality trends over time. Results: Among the 11,260 patients with NF and SS, 2,645 received PC whereas 8,615 did not. Female patients had significantly higher odds of receiving PC versus males (aOR: 1.42, 95% CI 1.27-1.58). No significant racial differences in PC utilization were observed. Patients receiving PC had higher odds of in-hospital mortality (aOR: 1.18, 95% CI 1.03-1.35). No significant trend in in-hospital deaths was observed over the study period. PC was associated with significantly shorter length-of-stay and lower costs. Conclusion: Our study provides comprehensive insights, and identifies gender differences in PC utilization in NF and SS patients. Further research must aim to refine delivery strategies and address potential differences in PC.

End-of-life care in Germany between 2016 and 2020 - A repeated cross-sectional analysis of statutory health insurance data.

The Hospice and Palliative Care Act of 2015 aimed at developing and regulating the provision of palliative care (PC) services in Germany. As a result of the legal changes, people with incurable diseases should be enabled to experience their final stage of life including death according to their own wishes. However, it remains unknown whether the act has impacted end-of-life care (EoLC) in Germany. The present study examined trends in EoLC indicators for patients who died between 2016 and 2020, in the context of Lower Saxony, Germany. Repeated cross-sectional analysis was conducted on data from the statutory health insurance fund AOK Lower Saxony (AOK-LS), referring to the years 2016-2020. EoLC indicators were: (1) the number of patients receiving any form of outpatient PC, (2) the number of patients receiving generalist outpatient PC and (3) specialist outpatient PC in the last year of life, (4) the onset of generalist outpatient PC and (5) the onset of specialist outpatient PC before death, (6) the number of hospitalisations in the 6 months prior to death and (7) the number of days spent in hospital in the 6 months prior to death. Data for each year were analysed descriptively and a comparison between 2016 and 2020 was carried out using t-tests and chi-square tests. Data from 160,927 deceased AOK-LS members were analysed. The number of patients receiving outpatient PC remained almost consistent over time (2016 vs. 2020 p = .077). The number of patients receiving generalist outpatient PC decreased from 28.4% (2016) to 24.5% (2020; p < .001), whereas the number of patients receiving specialist outpatient PC increased from 8.5% (2016) to 11.2% (2020; p < .001). The onset of generalist outpatient PC moved from 106 (2016) to 93 days (2020; p < .001) before death, on average. The onset of specialist outpatient PC showed the reverse pattern (2016: 55 days before death; 2020: 59 days before death; p = .041). Despite growing needs for PC at the end of life, the number of patients receiving outpatient PC did not increase between 2016 and 2020. Furthermore, specialist outpatient PC is being increasingly prescribed over generalist outpatient PC. Although the early initiation of outpatient PC has been proven valuable for the majority of people at the end of life, generalist outpatient PC was not initiated earlier in the disease trajectory over the study period, as was found to be true for specialist outpatient PC. Future studies should seek to determine how existing PC needs can be optimally met within the outpatient sector and identify factors that can support the earlier initiation of especially generalist outpatient PC. The study "Optimal Care at the End of Life" was registered in the German Clinical Trials Register (DRKS00015108; 22 January 2019).

Using the Tasmanian Palliative and End of Life Care Policy Framework (2022) to assess service delivery in a rural general practice.

This commentary uses the Tasmanian Palliative and End of Life Care Policy Framework (2022; the TPE Framework) to reflect upon palliative care services delivered by a rural Tasmanian general practice. Rural populations have challenges in accessing many healthcare services, including palliative care. General practitioners (GPs) and other primary healthcare workers are frequently relied upon to deliver palliative care in rural Australia. Palliative care is often needed before the end-of-life phase and patients prefer this to be delivered in the community or at home. GPs face challenges and barriers in continuing to deliver home-based palliative care services. All Medical Benefit Scheme billings for after-hours or home-based palliative care provided by the practice, between September 2021 and August 2022, were identified and patient demographic and clinical details collated. To further understand this data, nine GPs were surveyed to explore their attitudes to provision of palliative care service to the local rural communities they serve. These data highlighted several priority areas of the TPE Framework. The TPE Framework is used here to add to the shared understanding of palliative care service delivery in a rural community, and to see if GP's responses align with the priorities of the TPE Framework. Of the 258 after-hours and home-visits delivered over a 12-month period, almost 58% (n = 150) were for palliative care. Patients receiving palliative care were generally older than non-palliative patients visited (79.9 years vs. 72.0 years respectively; p = 0.004). Patients not at imminent risk of death (64.0%) were more frequently recipients of home-visits. Of the nine GPs responding to the survey, most intended to continue home visits for palliative patients. Disincentives to providing palliative care during home visits included a lack of time during the day (or after hours), low levels of interdisciplinary coordination or role-definition, and inadequate remuneration. Existing frameworks can be used as an implementation and evaluation guide to help understand local palliative care services. Using a Framework, a rural general practice in Tasmania reflected on their provision of palliative care services. Providing holistic palliative care services from a rural general practice is desirable and achievable with a coordinated, team-based approach. Access to and integration with specialist services remains a key component of community-based palliative care pathways.

Implementing advance care planning in palliative and end of life care: a scoping review of community nursing perspectives

BackgroundAdvance care planninganning (ACP) is a priority within palliative care service provision. Nurses working in the community occupy an opportune role to engage with families and patients in ACP. Carers and family members of palliative patients often find ACP discussions difficult to initiate. However, community nurses caring for palliative patients can encourage these discussions, utilising the rapport and relationships they have already built with patients and families. Despite this potential, implementation barriers and facilitators continue to exist. To date, no research synthesis has captured the challenges community nurses face when implementing ACP, nor the facilitators of community nurse-led ACP. Considering this, the review question of: 'What factors contribute to or hinder ACP discussion for nurses when providing care to palliative patients?’ was explored.MethodTo capture challenges and facilitators, a global qualitative scoping review was undertaken in June 2023. The Arksey and O’Malley framework for scoping reviews guided the review methodology. Six databases were searched identifying 333 records: CINAHL (16), MEDLINE (45), PUBMED (195), EMBASE (30), BJOCN (15), IJOPN (32). After de-duplication and title and abstract screening, 108 records remained. These were downloaded, hand searched (adding 5 articles) and subject to a full read. 98 were rejected, leaving a selected dataset of 15 articles. Data extracted into a data extraction chart were thematically analysed.ResultsThree key themes were generated: ‘Barriers to ACP’, ‘Facilitators of ACP’ and ‘Understanding of professional role and duty’. Key barriers were – lack of confidence, competence, role ambiguity and prognostic uncertainty. Key facilitators concerned the pertinence of the patient-practitioner relationship enabling ACP amongst nurses who had both competence and experience in ACP and/or palliative care (e.g., palliative care training). Lastly, nurses understood ACP to be part of their role, however, met challenges understanding the law surrounding this and its application processes.ConclusionsThis review suggests that community nurses' experience and competence are associated with the effective implementation of ACP with palliative patients. Future research is needed to develop interventions to promote ACP uptake in community settings, enable confidence building for community nurses and support higher standards of palliative care via the implementation of ACP.

Impact of the COVID-19 pandemic on the use of an inpatient and community palliative care service.

The COVID-19 pandemic disrupted the usual provision of healthcare, changing models of care, clinical loads, service provision and patient behaviour. This study assesses the impact of COVID-19 on community and inpatient palliative care service provision. A retrospective audit and comparison of service use conducted over two defined periods, before and during the COVID-19 pandemic, 2019-2020. The community palliative care service had a 9% increase in referrals, with a lower proportion of referrals (2.4%) from subacute/palliative care hospitals during the COVID-19 pandemic. Provision of care during the pandemic included less face-to-face contact with patients (24.1% versus 30.2% before), and markedly more contact with patients via videoconference (2.1% versus 0.1% before the pandemic). The community specialist palliative care service was busier during the pandemic period, and experienced a shift in mode of care delivery, while the inpatient unit experienced no difference in service use.

A global assessment of access to pediatric palliative care for children with cancer in resource-constrained settings.

87 Background: Pediatric palliative care reduces suffering, improves communication, and enhances quality of life for children with complex disease, especially children with cancer. Despite a disproportionate burden of pediatric cancer in resource-constrained settings) the provision of pediatric palliative care services is limited. We aim to describe the global landscape of palliative care services for pediatric hematology/oncology patients using data from the Abbreviated PrOFILE (Pediatric Oncology Facility Integrated Local Evaluation), a 360-degree evaluation tool assessing care capacity and guiding the development of an improvement strategy in institutions caring for children with cancer. Methods: One hundred and twelve institutions across 23 countries completed the Abbreviated PrOFILE from 2019-2021. We extracted data from questions regarding pediatric palliative care personnel and training, medications for symptom management, and patient outcomes. Results were stratified by World Bank income level. Results: The analyzed hospitals were from low (LIC) (6), lower-middle (LMIC) (34), upper-middle (UMIC) (55), and high (HIC) (17) income levels. They self-identified as primarily cancer hospitals (19%), children’s hospitals (22%), general hospitals (45%), and pediatric oncology institutions (12%). Access to specialists varied by income level with 71% of HICs, 41% of UMICs, 32% of LMICs, and 17% of LICs reporting almost always having access to palliative care specialists. These specialists were more likely to have formal education in childhood cancer in HIC (59%) compared to low- and middle-income countries. Oral morphine was reported available in 100% of HICs, 76% of UMICs, 27% of LMICs, and 33% of LICs. Injectable morphine had similar results with 100% of HICs, 96% of UMICs, 41% of LMICs, and 33% of LICs reporting almost always having availability. Ibuprofen, acetaminophen, dexamethasone, ondansetron, metoclopramide, omeprazole, diazepam, phenobarbital, and phenytoin were reported as almost always or frequently available in at least 50% of institutions in each income level. End-of-life and bereavement services were less available in LICs (17%), LMICs (18%), and UMIC (36%) than HICs (53%). Following completion of the Abbreviated PrOFILE tool, 50% of the regional cohorts set a priority to improve supportive, palliative, or end-of-life care. Conclusions: Access to pediatric palliative care services varies by income level. Despite increased need for palliative services in LMICs, there is less access to trained providers and essential medications, especially in those with decreased resources. These results will inform the implementation of improvement interventions among institutions providing care for children with cancer.

Challenges in Palliative Care Provision in Ethiopia: An Exploratory Qualitative Study.

The prevalence of chronic illnesses is increasing at an alarming rate in Ethiopia. However, the existing palliative care service is not adequate to address the palliative care need of the patients and their families. This demands the need to explore, among other things, the challenges in palliative care provision. Thus, this article aimed to examine the challenges of palliative care provision in Ethiopia. The study considered Ethiopia as a case and examined the topic using a qualitative exploratory design. The data used in the study were collected through 29 in-depth interviews and 5 focus group discussions with health professionals and other stakeholders and analyzed using thematic analysis technique with ATLAS-ti 7.0 computer software. This study explored patient-related, provider-related, health system-related and partnership-related challenges/gaps in palliative care in Ethiopia. Patient-related factors include, delay in seeking medical care, lack of awareness of disease conditions, discontinuation of treatment due to inability to pay, a lack of follow-up care by considering cancer diagnosis as end of life/death and preferring dying at home. Provider-related challenges include lack of awareness of palliative care, lack of pre-service/in-service training for health professionals, absence of palliative care in the curricula of health programs and scarcity of research information on palliative care in Ethiopia. Health-system challenges include lack of drug, reagent shortage, limited chemotherapy and radiotherapy services, and weak facility-community linkage. Finally, lack of collaborators between governmental and non-governmental organizations was seen as a challenge to the provision of palliative care in Ethiopia. The study revealed that the challenges to palliative care provision in Ethiopia include patient-related factors, provider-related factors, health facility-related factors and partnership-related factors. Therefore, it is vital to take these challenges into account in order to improve the current palliative care service provision in Ethiopia.

Providers' Understanding of Cancer Aetiology and Supportive Features for Indigenous Palliative Cancer Care Service Provision in Kenya.

Palliative care is a fundamental component of providing people-centred health services to cancer patients. However, the primary pillars of indigenous palliative care such as provider understanding of cancer, its aetiology, and features are undocumented. We sought to understand Traditional Health Providers (THPs) understanding of cancer aetiology, and the functional features that support indigenous palliative cancer care service provision in Kenya. The study used a mixed methods cross-sectional design. A semi-structured questionnaire was administered to 193 THPs, who self-reported to manage cancer patients. The findings were enriched and validated through member checking in 6 focus group discussions and five journey mapping in-depth interviews. Despite diversity in culture and experience among the indigenous providers in Kenya, their description of cancer etiology and their management practices and primary goal were similar. Cancer was consistently described as a deadly life-deforming disease by 61.1% of THPs (n = 118/193) and attributed to chemicals and toxins in the body 41.5% (n = 80). The indigenous palliative-care system was reported to be characterized by five tiered levels of care, diversity in expertise and experience, shared and consultative process (60%) and family involvement in medical decision (59.5%). Herbal regimen (60.1%) was found to be the cornerstone of informal palliative care blended with nutrition management 78.2% (n = 151), lifestyle changes 63.7% (n = 123) and counseling services 55.9% (n = 108). Payments for service were arbitrarily made in cash or in kind. The features of indigenous palliative care services are informed by the providers' distinctive cultural terms and descriptions of cancer and cancer aetiology. Shared and consultative protocols, regimen exchange, referral to cascaded care, and caregiver involvement were all important palliative-care clues to saving and enhancing lives. The features provide context for development of indigenous palliative care framework, engagement of policy makers, and promotion of culturally-inclusive indigenous palliative care model for adoption.

A Rapid Review of Uses and Outcomes of Telehealth Care in Rural and Remote Regions in the United States.

As telehealth expands and becomes an increasingly important provision of palliative care and hospice services, the understanding of the uses and outcomes of this care delivery platform in rural communities is warranted. This rapid review aims to highlight the practice, policy, and research implications of telehealth in rural regions. Using a systematic approach for accessing and synthesizing available publications, this review included 22 articles published between January 2020 and January 2023. Telehealth was used with adult and pediatric populations diagnosed with serious illnesses. Acceptance of this type of care delivery was noted in adults and children, but not all found telehealth a valuable mechanism for care. Telehealth services included but were not limited to direct communication between the provider and the patient/caregiver, medication management, and a peer-to-peer consultant role for rural palliative care and hospice teams. Of those studies addressing provider-centered outcomes, noise level, interruptions, missed appointments, and challenges with providing emotional support were reported. Organizational barriers, such as the lack of financial support, were noted for pediatric hospices. Individuals living in rural communities require more frequent, immediate, and specialized attention over their illness trajectory. Practice, policy, and research implications are identified to consider the next steps for telehealth delivery of palliative care.

Towards the Provision of Palliative Care Services in the Intensive Coronary Care Units: Nurses' Knowledge, Training Needs, and Related-Barriers.

Despite the notable benefits of palliative care (PC) for patients with chronic diseases, its delivery to people with cardiac problems, particularly in the Middle East region (EMR), remains a critical issue. There is a scarcity of research assessing nursing staff's needs and knowledge in providing PC to cardiac patients in the EMR. This study aimed to assess the level of knowledge and needs of PC among nurses towards the provision of PC in intensive coronary care units (ICCUs) in the Gaza Strip, Palestine. It also identified the barriers to the provision of PC services in ICCUs in the Gaza Strip. A hospital-based descriptive quantitative cross-sectional design was adopted to collect data from 85 nurses working in ICCUs at four main hospitals in the Gaza Strip. Knowledge about PC was collected using a developed questionnaire based on the Palliative Care Quiz Nursing Scale (PCQN) and Palliative Care Knowledge Test (PCKT). PC training needs and barriers were assessed using the PC Needs Assessment instrument. Approximately two-thirds of nurses did not receive any PC educational or training programs, which contributed to their lack of PC knowledge. Most nurses would like to enroll in PC training programs, such as family support and communications skills courses. Nurses reported that there was a high demand for PC guidelines and discharge planning for patients with chronic illnesses. Insufficient healthcare professionals' knowledge about PC and a staff shortage were the main barriers to integrating PC into the Gaza healthcare system. This study suggests incorporating PC into nursing curricula and in-service training, and it covers both basic and advanced PC principles. Intensive coronary care unit nurses need knowledge and training about PC, guidance, and support to provide appropriate care to patients with cardiovascular issues.

Barriers and Facilitators of Palliative Care in Older Adults With Heart Failure: A Qualitative Content Analysis.

Objectives: The progressive and unpredictable course of heart failure (HF) has made the provision of palliative care (PC) services to older adults with HF a serious challenge. This study aimed to explain the barriers and facilitators of PC in older adults with HF. Methods: This qualitative study was conducted using the content analysis approach. A sample of 15 participants, including 6 patients, 2 family caregivers, and 7 healthcare team members (4 nurses, a psychiatric nurse, a nutritionist, and a PC physician) were selected by purposive sampling over 10 months (November 21, 2020 to September 1, 2021). The data were collected using semistructured in-person interviews until data saturation and analyzed with conventional qualitative content analysis. Results: The findings revealed the main category of "neglecting the provision of PC," with 4 subcategories of "weak organizational structure," "poor social support," "older adults' and healthcare teams' poor knowledge," and "limited financial resources" as the barriers of PC and the main category of "enjoying support potentials" with 3 subcategories of "the cooperation of the government, benefactors, and nongovernmental organizations," "empathy from the family and relatives," and "benefiting from the presence of healthcare workers" as PC facilitators. Conclusions: The findings of this study explained the barriers and facilitators of PC in older adults with HF. Removing the barriers and supporting the facilitators give older adults with HF better access to PC. Therefore, to expand PC centers for older adults with HF, health system officials, and policy-makers should pay attention to organizational infrastructures and remove the barriers at organizational, social, educational, and economic levels with the cooperation of governmental organizations, benefactors, and nongovernmental organizations.

Development of a palliative care lecture series for hematology-oncology fellows.

e24112 Background: Many major organizations endorse provision of palliative care (PC) services for patients with advanced cancers from both oncologists and PC specialists. While ACGME has outlined core PC competencies, PC education during hematology-oncology (HO) fellowship is highly variable, and many fellows feel inadequately trained. We assessed whether incorporation of a PC lecture series could improve fellows’ self-perceived preparedness in basic PC skills. Methods: In this educational quality improvement initiative, current HO fellows at an NCI-designated cancer center received lectures on PC topics. Members of both the HO and hospice and palliative medicine fellowship programs met to discuss key components of a PC curriculum and identify available experts. Seven multidisciplinary faculty members delivered eight one-hour video-recorded virtual lectures to HO fellows over a three-month period. Lecture videos remained available online for later viewing in the event of fellow absences. Within a few weeks both pre- and post-lecture series, HO fellows completed surveys addressing their level of preparedness on a 5-point scale (from 1-not at all prepared to 5-extremely prepared) in performing several key skills. Two-tailed paired t-tests were performed to analyze pre/post changes in fellows’ level of preparedness. Results: Eleven fellows participated in the PC lecture series. Fellows’ level of preparedness increased across several PC topics (Table). The greatest increases were in creating a survivorship plan, converting from one opioid to another, and managing pain in a patient at risk for a substance use disorder. Fellows ranked individual lectures as very helpful to their learning, especially lectures on management of GI symptoms (4.9 +/- 0.3), pain management with opioids (4.8 +/- 0.4), and communication (4.5 +/- 0.5). Conclusions: Incorporation of a structured PC didactics series into HO fellowship is feasible, perceived as very useful, and associated with increased self-perceived preparedness. While more longitudinal and hands-on PC experience would likely promote HO fellows’ PC skills more deeply and durably, dedicated PC lectures are an important adjunctive component that can be easily incorporated into HO fellowship education. [Table: see text]

Hospice and Palliative Care for Patients in the Intensive Care Unit: Current Status in Countries Other than Korea.

Although most patients prefer dying at home, patients whose condition rapidly becomes critical need care in the intensive care unit (ICU), and it is rare for them to die at home with their families. Therefore, interest in hospice and palliative care for patients in the ICU is increasing. Hospice and palliative care (PC) is necessary for all patients with life-threatening diseases. The following patients need palliative care in the ICU: patients with chronic critical illnesses who need tracheostomy, percutaneous gastrostomy tube, and extracorporeal life support; patients aged 80 years or older; stage 4 cancer patients; patients with specific acute diseases with a poor prognosis (e.g., anoxic brain injury and intracerebral hemorrhage requiring mechanical ventilation); and patients for whom the attending physician expects a poor prognosis. There are two PC models-a consultative model and an integrative model-in the ICU setting. Since these two models have advantages and disadvantages, it is necessary to apply the model that best fits each hospital's circumstances. Furthermore, interdisciplinary decision-making between the ICU care team and PC specialists should be strengthened to increase the provision of hospice and palliative care services for patients expected to have poor outcomes and their families.

Proposal for improving access to palliative care by enhancing primary care services in an upper middle-income country.

Primary care doctors play an important role in providing palliative care as they are often the first point of contact for most healthcare needs in the community. This mixed-method study aims to 1) determine the accessibility of palliative care services in Malaysia, an upper middle-income country with universal health coverage, 2) explore the knowledge, challenges and opportunities faced by primary care doctors in providing palliative care and 3) identify if minimum standards for palliative care service are clearly defined, available and achieved in primary care facilities. Data on availability of palliative care services will be sourced from governmental and non-governmental databases and reports. Accessibility will be examined by estimating the distance, travel time and cost to the nearest facility offering palliative care services from various locations throughout Malaysia. In-depth interviews will be conducted with primary care doctors to explore their knowledge, challenges and opportunities in providing palliative care. Alongside, a survey will be conducted to evaluate whether components of palliative care services are available in primary care facilities using the Minimum Standard Tool for Palliative Care from India, which covers all the domains recommended by the World Health Organization. All findings will be inductively analysed and integrated, followed by a strengths, weaknesses, opportunities and threats analysis and a threats, opportunities, weaknesses and strength analysis with relevant stakeholders. The mapping study will provide empirical data on availability and accessibility of palliative care services in Malaysia. The qualitative inquiry will provide insights on the experiences and concerns of primary care physicians in providing palliative care in the community settings. The survey meanwhile will provide real-world data on availability of basic palliative care service components in the primary care facilities. Findings will facilitate development of framework and policies aiming to optimise provision of sustainable palliative care services at the primary care level in local settings.

Development of a complex intervention (safe and secure) to support non-western migrant patients with palliative care needs and their families.

International evidence supports the benefits of early use of palliative care, although the best use of services is often under-utilised among Danish migrants. The study aims to develop a theoretically informed, evidence-based intervention to increase support in palliative care service provision among non-western migrant patients with a life-threatening disease and their families in Denmark. The overall approach was guided by the United Kingdom Medical Research Council framework for developing and evaluating complex interventions by involving stakeholders for example patients, family caregivers, and healthcare professionals. The intervention was developed iteratively by incorporating theory and evidence. Evidence was synthesized from a systematic review, semi-structured interviews, and group discussions with patients (n=8), family caregivers (n=11), healthcare professionals (n=10); and three workshops with migrants (n=5), social and healthcare professionals (n=6). The study took place in six different settings in two regions across Denmark. The safe and secure complex intervention is a healthcare professional (e.g. nurse, physiotherapist, or occupational therapist) led patient-centred palliative care intervention at the basic level. The final intervention consists of three components 1. Education and training sessions, 2. Consultations with the healthcare professional, and 3. Coordination of care. This study describes the development of a supportive palliative care intervention for non-western migrant patients with palliative care needs and their families, followed by a transparent and systematic reporting process. A palliative care intervention combining multiple components targeting different stakeholders, is expected that safe and secure is more suitable and well customized in increasing access and use of palliative care services for non-western migrant families in Denmark.

Reflections of volunteer counselors working remotely during the COVID-19 pandemic-Implications for policy and practice.

We reflect on our experience of running a remote volunteer counseling service, known as the Counseling Collective, to support patients and their families during the second wave of the COVID-19 pandemic in Cape Town, South Africa, and the learning and implications for practice and policy regarding the effective utilization of volunteers during a crisis or disaster context. The Beta SARS-Co-2 variant dominated the second COVID-19 wave which gained momentum in December 2020, as public sector health teams prepared to deescalate services over the South African summer season. The ferocity with which the wave hit the city soon made it clear that volunteers would be needed to assist with counseling services as the Beta variant caused serious disease, resulting in a significant upswing in hospitalisations and deaths. Four counselors and a colleague with oversight responsibilities of the volunteers reflected on the service we provided. This was done with the benefit of hindsight a year after the activities of the Counseling Collective were wrapped up. Virtual volunteers are a largely untapped resource in the South African health care system. Much is to be gained by using this underutilized resource to deliver patient-centred services, especially in times of crisis. Networks of retired and self-employed health professionals, particularly nurses,-skilled volunteers-are a valuable resource and can be deployed for critical work using their versatile skillsets, in public health emergencies. Telephonic consultations are a useful modality for providing quality care and need to be built into the business of health services. Skills to conduct such consultations and for the provision of palliative care services need to be mainstreamed into the skillsets of health professionals. Public health disaster plans should include a blueprint for the rapid recruitment and deployment of volunteer counselors to assist permanent staff in providing crucial patient-centred care.

COVID-19 and the current state of palliative care in the United States.

Palliative care is becoming increasingly pertinent to be strengthened across health systems around the world, and the United States is not an exception. The emergence of the COVID-19 pandemic has disrupted provision and access to palliative care among patients with serious and complex illnesses, critically ill persons, and their families in the United States. Prior to the emergence of the pandemic, the United States faced a number of challenges ranging from racial discrimination, a stressed medical workforce, a lack of passable reimbursement for palliative care, and legal barriers, among others. Unfortunately, these issues have gotten worse amid the pandemic. This further revealed the need to invest more in innovative strategies that will ensure the provision of palliative care services during public health emergencies. In this article, we comment on the current state of palliative care in the United States.

The use of telehealth in the provision of after-hours palliative care services in rural and remote Australia: A scoping review.

BackgroundAccessing quality palliative care, especially at the end of life is vital in reducing physical and emotional distress and optimising quality of life. For people living in rural and remote Australia, telehealth services can be effective in providing access to after-hours palliative care.ObjectiveTo review and map the available evidence on the use of telehealth in providing after-hours palliative care services in rural and remote Australia.MethodScoping review using Arksey and O’Malley methodological framework. Findings are reported in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Scopus, Web of Science, CINAHL Complete, Embase via Ovid, Emcare via Ovid, and Medline via Ovid databases were searched. Peer-reviewed studies and grey literature published in English from 2000 to May 2021 were included.ResultsTwelve studies were included in the review. Four main themes were identified: 1) Stakeholder perceptions of service; 2) benefits to services and users; 3) service challenges; and 4) recommendations for service improvement.ConclusionTelehealth can connect patients and families with healthcare professionals and enable patients to continue receiving care at home. However, challenges relating to patients, service, staff skills, and experience need to be overcome to ensure the success and sustainability of this service. Improved communication and care coordination, better access to patient records, and ongoing healthcare professional education are required.ImplicationsProtocols, comprehensive policy documents and standardized operating procedures to guide healthcare professionals to provide after-hours palliative care is needed. Ongoing education and training for staff is crucial in managing patients’ symptoms. Existing service gaps need to be explored and alternative models of after-hours palliative care need to be tested.