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.

Dimensions of suffering and the need for palliative care: experiences and expectations of patients living with cancer and diabetes and their caregivers in Mexico - a qualitative study.

OBJECTIVES: Over 40 million people in low-income and middle-income countries (LMICs) experience serious health-related suffering (SHS) annually and require palliative care. Patient and caregiver experiences of SHS in LMICs are understudied despite their importance in guiding palliative care provision. Diabetes and cancer are the second-leading and third-leading causes of death in Mexico, causing a significant SHS burden on patients, families and health systems. This study examines SHS and palliative care from the point of view of patients with cancer and diabetes and their caregivers. DESIGN: A qualitative descriptive study based on in-depth telephone interviews was conducted between August 2021 and February 2022. Data were analysed through inductive thematic analysis. PARTICIPANTS: Overall, 20 patients with end-stage cancer, 13 patients with diabetes and 35 family caregivers were interviewed individually. SETTING: Participants were recruited from two family medicine clinics and a pain clinic in Mexico City. RESULTS: Seven themes emerged: (1) suffering as a multifaceted phenomenon, (2) diversity in perceptions of suffering, (3) different coping strategies, (4) need and perceived importance of relief from suffering, (5) barriers to accessing services to relieve suffering, (6) demand for the health sector's active and humane role in addressing suffering and (7) preferences and need for comprehensive care for relief from suffering. The primary coping strategies included family companionship, protective buffering and faith-based support. Participants lacked knowledge of palliative care. They expressed the importance of relief from suffering, viewing it as the health sector's responsibility and requesting more humane, personalised care and access to medicines and pain clinics. CONCLUSIONS: The multifaceted nature of SHS highlights the health system's responsibility to provide high-quality palliative care. Policies to enhance access to palliative care should integrate it into primary care, redesigning services towards patient and caregiver biopsychosocial and spiritual needs and ensuring access to medicines and competent health personnel.

Palliative care need in the Eastern Mediterranean Region and human resource requirements for effective response.

Integration of palliative care into health care systems is considered an ethical responsibility, yet no country in the Eastern Mediterranean Region (EaMReg) has achieved integration. Data on palliative care need and cost are crucial forEaMReg health care planners and implementers in the region. Using data from the Lancet Commission on Palliative Care and Pain Relief, we estimated the number of people in each EaMReg country who needed palliative care in 2015 and their degree of access. In three countries, we estimated the number of days during which an encounter for palliative care was needed at each level of the health care system. This enabled calculation of the number of full-time equivalents (FTEs) of clinical and non-clinical staff members needed at each level to administer the essential package of palliative care recommended by WHO. In 2015, 3.2 million people in the EaMReg needed palliative care, yet most lacked access to it. The most common types of suffering were pain, fatigue, weakness, anxiety or worry, and depressed mood. To provide safe, effective palliative care at all levels of health care systems, between 5.4 and 11.1 FTEs of trained and supervised community health workers per 100,000 population would be needed in addition to 1.0-1.9 FTEs of doctors, 2.2-4.3 FTEs of nurses, and 1.4-2.9 FTEs of social workers. Data from our study enables design of palliative care services to meet the specific needs of each EaMReg country and to calculate the cost or cost savings.

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.

Identifying Core Domains to Assess the "Quality of Death": A Scoping Review.

CONTEXT: There is growing recognition of the value to patients, families, society, and health systems in providing healthcare, including end-of-life care, that is consistent with both patient preferences and clinical guidelines. OBJECTIVES: Identify the core domains and subdomains that can be used to evaluate the performance of end-of-life care within and across health systems. METHODS: PubMed/MEDLINE (NCBI), PsycINFO (ProQuest), and CINAHL (EBSCO) databases were searched for peer-reviewed journal articles published prior to February 22, 2020. The SPIDER tool was used to determine search terms. A priori criteria were followed with independent review to identify relevant articles. RESULTS: A total of 309 eligible articles were identified out of 2728 discrete results. The articles represent perspectives from the broader health system (11), patients (70), family and informal caregivers (65), healthcare professionals (43), multiple viewpoints (110), and others (10). The most common condition of focus was cancer (103) and the majority (245) of the studies concentrated on high-income country contexts. The review identified five domains and 11 subdomains focused on structural factors relevant to end-of-life care at the broader health system level, and two domains and 22 subdomains focused on experiential aspects of end-of-life care from the patient and family perspectives. The structural health system domains were: 1) stewardship and governance, 2) resource generation, 3) financing and financial protection, 4) service provision, and 5) access to care. The experiential domains were: 1) quality of care, and 2) quality of communication. CONCLUSION: The review affirms the need for a people-centered approach to managing the delicate process and period of accepting and preparing for the end of life. The identified structural and experiential factors pertinent to the "quality of death" will prove invaluable for future efforts aimed to quantify health system performance in the end-of-life period.

Cross Country Comparison of Expert Assessments of the Quality of Death and Dying 2021.

CONTEXT: Few efforts have attempted to quantify how well countries deliver end-of-life (EOL) care. OBJECTIVES: To score, grade, and rank countries (and Hong Kong and Taiwan) on the quality of EOL care based on assessments from country experts using a novel preference-based scoring algorithm. METHODS: We fielded a survey to country experts around the world, asking them to assess the performance of their country on 13 key indicators of EOL care. Results were combined with preference weights from caregiver-proxies of recently deceased patients to generate a preference-weighted summary score. The scores were then converted to grades (from A-F) and a ranking was created for all included countries. RESULTS: The final sample included responses from 181 experts representing 81 countries with 2 or more experts reporting. The 6 countries who received the highest assessment scores and a grade of A were United Kingdom, Ireland, Taiwan, Australia, Republic of Korea, and Costa Rica. Only Costa Rica (upper middle) is not a high income country. Not until Uganda (ranked 31st) does a low-income country appear on the ranking. Based on the assessment scores, twenty-one countries received a failing grade, with only two - Czech Republic (66th), and Portugal (75th) - being high income countries. CONCLUSION: This study provides an example of how a preference-based scoring algorithm and input from key stakeholders can be used to assess EOL health system performance. Results highlight the large disparities in assessments of the quality of EOL care across countries, and especially between the highest income countries and others.

Comprehensive value-based cancer care in India: Opportunities for systems strengthening.

Cancer has been one of the leading causes of death in India in the past decade. The growing cancer burden has generated an unmet need to identify and address gaps in the healthcare system to enable access to affordable and quality cancer care for all in a manner that enhances the value of care. This paper provides an overview of the value-based care approach, identifies areas for enhancing the objectives of value-based care through multi-characteristic and multidimensional consideration of patient centricity and proposes health system strategies to improve comprehensive value-based care in India within the current context, focusing on implications for women's cancers. The core characteristics of patient centricity - heterogeneity and complexity - are detailed to complement and expand on previously defined aspects of value-based care. Comprehensive value-based cancer care can serve as a test case and proof of concept for the rest of the health system in India and focusing on women's cancers as a starting point can mandate attention to gender-responsive and transformative design and implementation.

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.

Patient-Reported Outcomes in Health Economic Decision-Making: A Changing Landscape in Oncology.

Cancer causes significant death and disability globally. However, costs of more personalized cancer care continue to climb, while access to basic cancer screening and treatment is not available to much of the world. This chapter provides an overview of the status of patient-reported outcomes (PROs) in cancer clinical care and research. PROs are valuable for health care and health economic decision-making at institutional, regional, national, and international levels. PRO data should be considered along with cost and survival data when approving new therapies. PRO data can also be helpful when assessing existing treatment options for patients, particularly for drugs with minor outcome and toxicity differences. Finally, PROs can be useful in reimbursement algorithms to ensure delivery of quality cancer care in value-based financing environments. The authors advocate for reframing the concept of health value, aligning PRO measures with societal values, and broadening the definition of society to extend beyond national boundaries.

Avoidable Mortality: The Core of the Global Cancer Divide.

Purpose The incidence of infection-associated cancers and lethality of cancers amenable to treatment are closely correlated with the income of countries. We analyzed a core part of this global cancer divide-the distribution of premature mortality across country income groups and cancers-applying novel approaches to measure avoidable mortality and identify priorities for public policy. Methods We analyzed avoidable cancer mortality using set lower- and upper-bound age limits of 65 and 75 years (empirical approach), applying cancer-specific and country income group-specific ages of death (feasibility approach), and applying cancer-specific ages of death of high-income countries to all low- and middle-income countries (LMICs; social justice approach). We applied these methods to 2015 mortality data on 16 cancers for which prevention is possible and/or treatment is likely to result in cure or significant increase in life expectancy. Results At least 30% and as much as 50% of cancer deaths are premature, corresponding to between 2.6 and 4.3 million deaths each year, and 70% to 80% are concentrated in LMICs. Using the feasibility approach, 36% of cancer deaths are avoidable; with the social justice approach, 45% of cancer deaths are avoidable. Five cancer types-breast, colorectal, lung, liver, and stomach-account for almost 75% of avoidable cancer deaths in LMICs and worldwide. Conclusion Each year, millions of premature cancer deaths could be avoided with interventions focused on four priority areas: infection-associated cancers, lifestyle and risk factors, women's cancers, and children's cancers. Our analysis of the global burden and the specific cancer types associated with avoidable cancer mortality suggests significant opportunities for health systems to redress the inequity of the global cancer divide.