The impact of COVID-19 on palliative care workers across the world: A qualitative analysis of responses to open-ended questions.

OBJECTIVE: With over two million deaths and almost 100 million confirmed cases, the COVID-19 pandemic has caused a "tsunami of suffering." Health care workers, including palliative care workers, have been severely impacted. This study explores how the COVID-19 pandemic has impacted palliative care workers around the world and describes the coping strategies they have adopted to face their specific situation. METHOD: We conducted a qualitative analysis of written, unstructured comments provided by respondents to a survey of IAHPC members between May and June 2020. Free text was exported to MAX QDA, and a thematic analysis was performed by reading the comments and developing a coding frame. RESULTS: Seventy-seven palliative care workers from 41 countries submitted at least one written comment, resulting in a data corpus of 10,694 words and a total of 374 coded comments. Eight main themes are emerged from the analysis: palliative care development, workforce impact, work reorganization, palliative care reconceptualization, economic and financial impacts, increased risk, emotional impact, and coping strategies. SIGNIFICANCE OF RESULTS: The pandemic has had a huge impact on palliative care workers including their ability to work and their financial status. It has generated increased workloads and placed them in vulnerable positions that affect their emotional well-being, resulting in distress and burnout. Counseling and support networks provide important resilience-building buffers. Coping strategies such as team and family support are important factors in workers' capacity to adapt and respond. The pandemic is changing the concept and praxis of palliative care. Government officials, academia, providers, and affected populations need to work together to develop, and implement steps to ensure palliative care integration into response preparedness plans so as not to leave anyone behind, including health workers.

Impact of COVID-19 Pandemic on Palliative Care Workers: An International Cross-sectional Study.

OBJECTIVES: The COVID-19 pandemic and the measures taken to mitigate spread have affected countries in different ways. Healthcare workers, in particular, have been impacted by the pandemic and by these measures. This study aims to explore how COVID-19 has impacted on palliative care (PC) workers around the world. MATERIALS AND METHODS: Online survey to members of the International Association for Hospice and PC during the initial months of the COVID-19 pandemic. Convenience sampling was used. Statistical descriptive and contingency analyses and Chi-square tests with P < 0.05 were conducted. RESULTS: Seventy-nine participants (RR = 16%) from 41 countries responded. Over 93% of those who provide direct patient care reported feeling very or somewhat competent in PC provision for patients with COVID-19. Eighty-four felt unsafe or somewhat safe when caring for patients with COVID-19. Level of safety was associated with competence (P ≤ 0.000). Over 80% reported being highly or somewhat affected in their ability to continue working in their PC job, providing care to non-COVID patients and in staff availability in their workplace. About 37% reported that availability and access to essential medicines for PC were highly or somewhat affected, more so in low-income countries (P = 0.003). CONCLUSION: The results from this study highlight the impact of COVID-19 on the provision of PC. It is incumbent on government officials, academia, providers and affected populations, to develop and implement strategies to integrate PC in pandemic response, and preparedness for any similar future events, by providing appropriate and comprehensive education, uninterrupted access to essential medicines and personal protective equipment and ensure access to treatment and care, working together with all levels of society that is invested in care of individuals and populations at large. The long-term effects of the pandemic are still unknown and future research is needed to monitor and report on the appropriateness of measures.

Trends analysis of specialized palliative care services in 51 countries of the WHO European region in the last 14 years.

BACKGROUND: Service provision is a key domain to assess national-level palliative care development. Three editions of the European Association for Palliative Care (EAPC) Atlas of Palliative Care monitored the changes in service provision across Europe since 2005. AIM: To study European trends of specialized service provision at home care teams, hospital support teams, and inpatient palliative care services between 2005 and 2019. DESIGN: Secondary analysis was conducted drawing from databases on the number of specialized services in 2005, 2012, and 2019. Ratios of services per 100,000 inhabitants and increase rates on number of services for three periods were calculated. Analysis of variance (ANOVA) analyses were conducted to determine significant changes and chi-square to identify countries accounting for the variance. Income-level and sub-regional ANOVA analysis were undertaken. SETTING: 51 countries. RESULTS: Forty-two countries (82%) increased the number of specialized services between 2005 and 2019 with changes for home care teams (104% increase-rate), inpatient services (82%), and hospital support teams (48%). High-income countries showed significant increase in all types of services (p < 0.001), while low-to-middle-income countries showed significant increase only for inpatient services. Central-Eastern European countries showed significant improvement in home care teams and inpatient services, while Western countries showed significant improvement in hospital support and home care teams. Home care was the most prominent service in Western Europe. CONCLUSION: Specialized service provision increased throughout Europe, yet ratios per 100,000 inhabitants fell below the EAPC recommendations. Western Europe ratios' achieved half of the suggested services, while Central-Eastern countries achieved only a fourth. High-income countries and Western European countries account for the major increase. Central-Eastern Europe and low-to-middle-income countries reported little increase on specialized service provision.

Solving the Global Crisis in Access to Pain Relief: Lessons From Country Actions.

Annually, more than 61 million people worldwide experience about 6 billion days of serious health-related suffering that could be alleviated with access to palliative care and pain relief. However, palliative care is limited or nonexistent in most parts of the world. The access abyss is so stark that 50% of the world's poorest populations live in countries that receive only 1% of the opioid analgesics distributed worldwide. By contrast, the richest 10% of the world's population live in countries that receive nearly 90% of the opioid pain relief medications.The Lancet Commission on Global Access to Palliative Care and Pain Relief developed a framework to measure the global burden of serious health-related suffering and generated the evidence base to address this burden.We present the inequities in access to pain relief and highlight key points from country responses, drawing from and building on recommendations of the Lancet Commission report "Alleviating the Access Abyss in Palliative Care and Pain Relief-An Imperative of Universal Health Coverage" to close the access abyss in relief of pain and other types of serious health-related suffering.

Palliative care in Africa: a scoping review from 2005-16.

Since the last comprehensive review on the development of national palliative care in Africa was undertaken 12 years ago, in 2005, we did a scoping review of peer-reviewed, published articles on palliative care development between 2005-16 for each African country. The scoping review was conducted by assessing the medical literature and including local expert recommendations of suggested articles. We did a basic quality assessment of the articles using the journals' impact factor, journal quartile, and the number of citations as suitable metrics for quality consideration. Articles published in English, Spanish, Portuguese, and French that mentioned at least one dimension of WHO's palliative care public health strategy (implementation of services, education, policies, or medicine availability) and vitality (activity by professionals or advocates) were included. Of the 518 articles found, 49 met the inclusion criteria. Information on 26 (48%) of 54 African countries was found. Most services were concentrated in Kenya, South Africa, and Uganda, and 14 (26%) countries showed an increase in services during this timeframe. Stand-alone palliative care policies exist in Malawi, Mozambique, Rwanda, Swaziland, Tanzania, and Zimbabwe. Postgraduate diplomas in palliative care are available in Kenya, South Africa, Uganda, and Tanzania. Restricted access to opioids, prescriber restriction laws, and a low prevalence of morphine use remain common barriers to adequate palliative care provision. Although information on palliative care is unevenly distributed, the available information showed an increased development of palliative care services in a subset of African countries. Despite this growth, however, there is still minimal to no identified palliative care development in most African countries.

Opportunities for Palliative Care in Public Health.

In May 2014, the World Health Assembly, of the World Health Organization (WHO), unanimously adopted a palliative care (PC) resolution, which outlines clear recommendations to the United Nations member states, such as including PC in national health policies and in the undergraduate curricula for health care professionals, and highlights the critical need for countries to ensure that there is an adequate supply of essential PC medicines, especially those needed to alleviate pain. This resolution also carries great challenges: Every year over 20 million patients (of which 6% are children) need PC at the end of life (EOL). However, in 2011, approximately three million patients received PC, and only one in ten people in need is currently receiving it. We describe this public health situation and systems failure, the history and evolution of PC, and the components of the WHO public health model. We propose a role for public health for PC integration in community settings to advance PC and relieve suffering in the world.

Palliative care development in Latin America: an analysis using macro indicators.

BACKGROUND: Recently, the Latin American Association for Palliative Care developed 10 indicators to monitor the development of palliative care and enhance the development of regional and national strategies. AIM: To compare the status of palliative care development across Latin American nations using the Latin American Association for Palliative Care indicators and to classify the countries into three levels of palliative care development. METHODS: A secondary analysis using the following indicators (number of indicators in each category): Policy (1), Education (3), Service Provision (3), and Opioids (3). A Latin American Association for Palliative Care Index was constructed adding the standard score (z-score) of each indicator. SETTING/PARTICIPANTS: Nineteen Spanish and Portuguese-speaking countries of Latin America. RESULTS: Indicators significantly associated with the number of palliative care services per million inhabitants included: the proportion of medical schools with palliative care at the undergraduate level (p = 0.003), the number of accredited physicians working in palliative care (p = 0.001), and opioids consumed per capita (p = 0.032). According to the Latin American Association for Palliative Care Index, Costa Rica registered the highest score (8.1). Three ranking groups were built to measure palliative care development; Costa Rica, Chile, Mexico, and Argentina ranked in the high group, while Bolivia, Honduras, Dominican Republic, and Guatemala ranked in the lowest group. CONCLUSION: Most of the Latin American Association for Palliative Care indicators are useful for assessing national levels of palliative care development. These indicators may be applicable to other world regions. Additional studies are needed to evaluate the specificity of each indicator.

Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology.

CONTEXT: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. OBJECTIVES: In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. METHODS AND RESULTS: The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. CONCLUSIONS: The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.

Sexual risk-taking behaviour among HIV outpatients in Argentina.

HIV prevention strategies must be based on evidence of risk behaviours among people with HIV infection. This study aimed to determine the demographic, behavioural and self-reported disease/treatment variables that predict sexual risk behaviour, defined as unprotected intercourse with a partner of unknown or negative HIV status, among HIV-infected outpatients in Buenos Aires, Argentina. Two hundred consecutive outpatients (response rate 76.5%) participated in a self-complete cross sectional survey. The majority (49.5%) identified as heterosexual, and most were on antiretroviral therapy (ART) (75.5%). Undetectable viral load was currently achieved by 63%. Unprotected intercourse with a person of unknown or discordant status in the previous three months was reported by 20%. In multivariate analysis, risk was associated with lower distress from physical symptoms (p=0.012), greater distress from psychological symptoms (p=0.038) and being on treatment had borderline association with risk (p=0.058). The data reveal an important link between self-reported experience of disease, and treatment, with risk. Secondary prevention, care and treatment should not be conducted in isolation from each other if outcomes are to be optimised.

How to Advance Palliative Care Research in South America? Findings From a Delphi Study.

CONTEXT: Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. OBJECTIVES: To develop a set of recommendations to advance PC research in SA. METHODS: Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. RESULTS: 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant. CONCLUSION: Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.

Palliative Care in Latin America: Are We Making Any Progress? Assessing Development Over Time Using Macro Indicators.

BACKGROUND: Monitoring and reporting palliative care development serves to identify progress as well as remaining challenges for improvement. AIM: To report on the updated status of palliative care development in Latin America, develop and apply a new index to measure progress, and enable cross-country comparisons. METHODS: We conducted a secondary analysis of the data collected for the first (2012) and second (2020) editions of the Atlas of Palliative Care in Latin America using indicators on Policy, Education, Access to Medicines and Service Provision. The ALCP indicators were reviewed and the ALCP Index-II was constructed adding the z-score for each indicator and used to rank the countries' development as High, Moderate or Low. SETTING/PARTICIPANTS: Seventeen Latin American countries. RESULTS: The number of countries with a national palliative care plan increased from 5 (29%) to 10 (59%); Percentage of medical schools with palliative care as an independent subject at the undergraduate level grew from 4.2 to 15.4%; Distributed Opioid Morphine Equivalence increased from 6.6 to 7.1 mg/capita; and Number of services increased from 1.5 to 2.6/million. The number of palliative care services was correlated to the proportion of medical schools which included palliative care (Rs1=0.3; Rs2=0.31); and with morphine equivalence/capita (Rs1=0.61; Rs2=0.72), and with the existence of a national plan (p2=0.005). With the standardization of the indicators, three groups ranked by development were identified Uruguay, Chile, Costa Rica, Argentina Panama, and Brazil ranked the highest while the other ranked in the middle or lowest groups. According to the ALCP Index-II, Uruguay registered the highest score (7.5), Honduras the lowest (-3.7). The dispersal in the values was larger than the one registered in 2012, showing more heterogeneity. CONCLUSION: Significant advances in palliative care development in Latin America have been achieved. The ALCP-II Index is useful for assessing and comparing palliative care development across countries.

How Universal Is Palliative Care in Colombia? A Health Policy and Systems Analysis.

Colombia's health sector reform has been recognized for its universal health (UHC) coverage scheme. However, this reform evolved without palliative care (PC), thereby omitting a core element of UHC. In this paper, we analyze the Colombian health system reform and health policies in relation to PC. We present the history, innovations, successes, and shortcomings of the reform and summarize the lessons learned to strengthen efforts leading to PC integration. Our analysis is based on the WHO public health framework for PC (policy, access to medicines, education, service provision). For several years and especially during the last decade, the government enacted laws and regulations to improve access to essential medicines and to integrate PC. Relative to other countries in Latin America, Colombia was the first to launch a PC service and to accredit palliative medicine as a specialty, the second to establish a national PC association and one of the few countries with a specific PC law. However, data shows that there are still too few services to meet the PC needs of approximately 250,000 adult patients annually. Our analysis shows that the country's failure to integrate PC most likely is a result of limited health worker education. Advocacy efforts should include deans of schools and provosts, in addition to policy makers and regulators. Other possible factors affecting uptake and implementation of existing national policies are civil unrest and limited collaboration between government offices. Additional research is needed to evaluate the impact of these and other related factors on PC integration in Colombia.

Advancing Global Palliative Care Over Two Decades: Health System Integration, Access to Essential Medicines, and Pediatrics.

CONTEXT: Between 2000 and 2020 Open Society Foundations was one of very few funders that supported global palliative care development and advocacy. OBJECTIVES: To describe progress made in three priority areas-the integration of palliative care into public health systems, access to controlled medicines, and pediatric palliative care-during those 20 years. METHODS: Activities and developments between 2000 and 2020 on global integration of palliative care into health systems, access to and availability of controlled medicines, and pediatric palliative care are described and analyzed. RESULTS: Major progress has been made in each area. Whereas in 2000, integration of palliative care into public healthcare systems was on the agenda in just a few pioneering countries, by 2020 a global consensus had emerged that palliative care should be integral to all health systems including in universal health coverage and countries were increasingly taking steps to integrate it into national health systems. While limited availability of these medicines was barely recognized as a public health or drug control issue in 2000, it had become an important priority in global drug policy debates by 2020 and numerous countries had taken steps to improve access to these medicines. Pediatric palliative care, available mostly in a small number of wealthy countries in the 1990s, has seen rapid growth, especially in low- and middle-income countries, and now has a solid foothold in all world regions. CONCLUSION: Despite this progress, significant challenges remain as funding for palliative care advocacy is limited, the overdose crisis in the US has recently had a chilling effect on efforts to improve availability of opioid analgesics, and economic crises related to the COVID-19 pandemic create uncertainty over the future of universal health coverage.

Optimizing the Global Nursing Workforce to Ensure Universal Palliative Care Access and Alleviate Serious Health-Related Suffering Worldwide.

CONTEXT: Palliative care access is fundamental to the highest attainable standard of health and a core component of universal health coverage. Forging universal palliative care access is insurmountable without strategically optimizing the nursing workforce and integrating palliative nursing into health systems at all levels. The COVID-19 pandemic has underscored both the critical need for accessible palliative care to alleviate serious health-related suffering and the key role of nurses to achieve this goal. OBJECTIVES: 1) Summarize palliative nursing contributions to the expansion of palliative care access; 2) identify emerging nursing roles in alignment with global palliative care recommendations and policy agendas; 3) promote nursing leadership development to enhance universal access to palliative care services. METHODS: Empirical and policy literature review; best practice models; recommendations to optimize the palliative nursing workforce. RESULTS: Nurses working across settings provide a considerable untapped resource that can be leveraged to advance palliative care access and palliative care program development. Best practice models demonstrate promising approaches and outcomes related to education and training, policy and advocacy, and academic-practice partnerships. CONCLUSION: An estimated 28 million nurses account for 59% of the international healthcare workforce and deliver up to 90% of primary health services. It has been well-documented that nurses are often the first or only healthcare provider available in many parts of the world. Strategic investments in international and interdisciplinary collaboration, as well as policy changes and the safe expansion of high-quality nursing care, can optimize the efforts of the global nursing workforce to mitigate serious health-related suffering.

Integrating palliative care in public health: the Colombian experience following an international pain policy fellowship.

Access to palliative care is insufficient in many countries around the world. In an effort to improve access to palliative care services and treatments, a public health approach as suggested by the World Health Organization was implemented in Colombia to improve opioid availability, increase awareness and competences about palliative care for healthcare workers, and to include palliative care as a component of care in legislation. As a result, opioid availability has improved, a mandatory palliative care course for medical undergraduate students has been implemented and a palliative care law is being discussed in the Senate. This article describes the strategy, main achievements and suggestions for implementing similar initiatives in developing countries.