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

Inequities and gaps in palliative care access are a serious impediment to health systems especially 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. In this paper, an updated methodology - SHS2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. 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. The discussion 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.

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.

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.

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.

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.

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.

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 1st (2012) and 2nd (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 five (29%) to nine (53%); Percentage of medical schools with palliative care as an independent subject at the undergraduate level grew from 4.2% to 17.1%; 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 = 0.48; Rs2 = 0.34); and with morphine equivalence/capita (Rs1 = 0.61; Rs2 = 0.72), but not associated with the existence of a national plan (p1 = 0.234; p2 = 0. 074). Using the ALCP Index-II, Uruguay, Chile, Costa Rica, Panama, Brazil, and Argentina ranked the highest while the other ranked in the middle or lowest groups. Uruguay registered the highest score (7.5), Honduras the lowest (-3.59). 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.

Palliative Medicine Specialization in Latin America: A Comparative Analysis.

BACKGROUND: Formal recognition of palliative medicine as a specialty has been one of the main drivers in the development of palliative care. AIM: To provide a comparative, comprehensive overview on the status of palliative medicine as medical specialty across Latin America. METHODS: We conducted a comparative study of 19 Latin American countries. Key informants and persons in charge of the specialization training programs were identified and interviewed. We collected data on general recognition as specialty (title, process of certification) and on training program characteristics (title, start year, requirements, training length, and type full time or part time). RESULTS: Eight of 19 countries (42%) Argentina, Brazil, Colombia, Costa Rica, Ecuador, Mexico, Paraguay and Venezuela reported palliative medicine as medical specialty. Thirty-five (sub)specialization training programs in palliative medicine were identified in the region (eight as a specialty and 27 as a subspecialty), the majority in Colombia (43.5%) and Brazil (33.7%). A total of 20% of the programs have yet to graduate their first cohort. Length of clinical training as specialty varied from two to four years, and from 520 hours to three years for a subspecialty. CONCLUSION: Despite long-standing efforts to improve quality of care, and significant achievements to date, most Latin American countries have yet to develop palliative medicine as medical specialty. Specialty and sub-specialty training programs remain scarce in relation to regional needs, and the programs that do exist vary widely in duration, structure, and content.

Top Ten Tips Palliative Clinicians Should Know About Evidence-Based Advocacy.

The escalating global burden of serious health-related suffering makes the need for funded policies that integrate palliative care (PC) into the continuum of services more urgent than ever. Palliative specialists are uniquely positioned to merge their clinical expertise with empirical evidence to advocate for improved PC delivery. There is a vital feedback loop between advocacy and clinical practice that palliative specialists can leverage to influence key stakeholders and decision makers and bridge PC policy deficits. Sustained interdisciplinary partnerships are critical to evidence-based PC advocacy that addresses resource gaps, social injustice, and unmet and disparate needs. Although PC advocacy may appear optional or even frivolous at times, it is an essential skill for any practitioner working to improve care for seriously ill individuals and their families. This article highlights 10 pragmatic tips that palliative specialists can use to advocate for policy changes that enhance PC access and equity at institutional, local, national, and global levels.

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.

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.

Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

Availability of Internationally Controlled Essential Medicines in the COVID-19 Pandemic.

Section 2 of the 2019 World Health Organization Model List of Essential Medicines includes opioid analgesics formulations commonly used for the control of pain and respiratory distress, as well as sedative and anxiolytic substances such as midazolam and diazepam. These medicines, essential to palliative care, are regulated under the international drug control conventions overseen by United Nations specialized agencies and treaty bodies and under national drug control laws. Those national laws and regulations directly affect bedside availability of Internationally Controlled Essential Medicines (ICEMs). The complex interaction between national regulatory systems and global supply chains (now impacted by COVID-19 pandemic) directly affects bedside availability of ICEMs and patient care. Despite decades of global civil society advocacy in the United Nations system, ICEMs have remained chronically unavailable, inaccessible, and unaffordable in low- and-middle-income countries, and there are recent reports of shortages in high-income countries as well. The most prevalent symptoms in COVID-19 are breathlessness, cough, drowsiness, anxiety, agitation, and delirium. Frequently used medicines include opioids such as morphine or fentanyl and midazolam, all of them listed as ICEMs. This paper describes the issues related to the lack of availability and limited access to ICEMs during the COVID-19 pandemic in both intensive and palliative care patients in countries of all income levels and makes recommendations for improving access.

Mapping Pediatric Palliative Care Development in the WHO-European Region: Children Living in Low-to-Middle-Income Countries Are Less Likely to Access It.

CONTEXT: Approximately 170,000 children in need of palliative care die every year in Europe without access to it. This field remains an evolving specialty with unexplored development. OBJECTIVES: To conduct the first regional assessment of pediatric palliative care (PPC) development and provision using data from the European Association for Palliative Care atlas of palliative care 2019. METHODS: Two surveys were conducted. The first one included a single question regarding PPC service provision and was addressed by European Association for Palliative Care atlas informants. The second one included 10 specific indicators derived from an open-ended interview and rating process; a specific network of informants was enabled and used as respondents. Data were analyzed and presented in the map of the figure. RESULTS: Data on PPC service provision were gathered from 51 of 54 (94%) European countries. Additional data were collected in 34 of 54 (62%) countries. A total of 680 PPC services were identified including 133 hospices, 385 home care services, and 162 hospital services. Nineteen countries had specific standards and norms for the provision of PPC. Twenty-two countries had a national association, and 14 countries offered education for either pediatric doctors or nurses. In seven countries, specific neonatal palliative care referral services were identified. CONCLUSION: PPC provision is flourishing across the region; however, development is less accentuated in low-to-middle-income countries. Efforts need to be devoted to the conceptualization and definition of the models of care used to respond to the unmet need of PPC in Europe. The question whether specialized services are required or not should be further explored. Strategies to regulate and cover patients in need should be adapted to each national health system.

Palliative Care Advocacy: Why Does It Matter?

Evidence-based advocacy within the United Nations system for integration of palliative care into primary health care is essential to inspire and nurture the political will necessary to support the development and funding of national palliative care policy. National policy is, in turn, essential to underwrite clinical delivery that leaves no patient behind. Although International Association for Hospice and Palliative Care (IAHPC) has engaged in advocacy since its inception, the board decision to prioritize advocacy as part of the organization's strategic plan has taken it to a more formal level. This piece summarizes the content of the basic advocacy course released for IAHPC members, defines palliative care and advocacy, distinguishes advocacy from lobbying, discusses how an international organization such as the IAHPC advocates for palliative care at the global level, and clarifies the vital feedback loop between advocacy and clinical practice.