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.

Top Ten Tips Palliative Care Clinicians Should Know About Providing Care for People With Disabilities.

Palliative care (PC) clinicians are well poised to help people with disabilities (PWD) live well in the context of serious illness. PC prioritizes person-centered care with a focus on function, autonomy, and quality of life. This approach aligns with principles of high-quality care for PWD. An understanding of the unique experiences and needs of PWD can advance the delivery of comprehensive, equitable PC for this population. In this article, we provide 10 tips to help PC clinicians develop an informed disability lens in their approach to care.

Mapping Palliative Care Availability and Accessibility: A First Step to Eradicating Access Deserts in the Low- and Middle-Income Settings.

OBJECTIVE: Palliative care is unavailable and/or inaccessible for the majority of people in low- and middle-income countries (LMIC). This study aims to determine the availability and accessibility of palliative care services in Malaysia, a middle-income country that has made good progress toward universal health coverage (UHC). METHOD: Publicly available data, and databases of registered palliative care services were obtained from governmental and nongovernmental sources. Google Maps and Rome2Rio web-based applications were used to assess geographical disparities by estimating the median distance, travel time, and travel costs from every Malaysian district to the closest palliative care service. RESULTS: Substantial variations in availability, components, and accessibility (distance, time, and cost to access care) of palliative care services were observed. In the highly developed Central Region of Peninsular Malaysia, specialty care was available within 4 km whereas in the less-developed East Coast of Peninsular Malaysia, patients had to travel approximately 46 km. In the predominantly rural East Malaysia, basic palliative care services were 82 km away and, in some instances, where land connectivity was scarce, it took 2.5 h to access care via boat. The corresponding median travel costs were USD2 (RM9) and USD23 (RM114) in Peninsular Malaysia and East Malaysia. CONCLUSION: The stark urban-rural divide in the availability and accessibility of palliative care services even in a setting that has made good progress toward UHC highlights the urgent need for decentralization of palliative care in the LMICs. This may be achieved by capacity building and task shifting in primary care and community settings.

Palliative Justice Post-COP27.

The climate crisis is a planetary existential threat, disproportionately affecting the poorest populations worldwide. People in low- and middle-income countries (LMICs) experience the most detrimental consequences of climate injustice, endangering their livelihoods, safety, overall wellbeing, and survival. Although the 2022 United Nations Climate Change Conference (COP27) put forth several internationally salient recommendations, the outcomes fall short to efficiently tackle the suffering that exists at the intersection of social and climate injustice. Individuals with serious illness living in LMICs have the highest burden of health-related suffering globally. In fact, more than 61 million people experience serious health-related suffering (SHS) each year that is amenable to palliative care. Despite this well-documented burden of SHS, an estimated 88-90% of palliative care need is unmet, the majority in LMICs. To equitably address suffering at individual, population, and planetary levels in LMICs, a palliative justice approach is crucial. The interplay of human and planetary suffering requires that current planetary health recommendations be expanded to incorporate a whole-person and whole-people perspective that recognizes the need for environmentally conscious and community-based research and policy initiatives. Conversely, palliative care efforts should incorporate planetary health considerations to ensure sustainability in capacity building and service provision. In sum, the optimal health of the planet will remain elusive until we can holistically recognize the value of relieving all suffering due to life-limiting conditions, as well as the value in preserving the natural resources of countries in which all people are born, live, age, suffer, die, and grieve.

Enhancing the education of paediatric nurses: A positive step towards achieving sustainable development goals.

AIM: The aim of this discursive paper was to describe and expound on how paediatric nurses will be able to address the needs of children and adolescents through the lens of selected Sustainable Development Goals (SDGs) in Rwanda. DESIGN: A discursive analysis of SDGs relating to the roles of paediatric nurses in the context of Rwanda. METHODS: A discursive method using SDGs as a guiding framework is used in this paper. We drew on our own experiences and supported them with the available literature. RESULTS: A collection of contextually relevant examples of how paediatric nurses will be able to address the needs of children and adolescents through the lens of selected SDGs in Rwanda was discussed. The selected SDGs expounded on were: no poverty, good health and well-being, quality of education, decent work and economic growth, reduced inequalities, and partnerships for the goals. CONCLUSIONS: There is no doubt that the paediatric nurses in Rwanda play undeniable key roles in attaining SDGs and their targets. Thus, there is a need to train more paediatric nurses with the support of the interdisciplinary partners. Collaboratively, this is possible in the bid to ensure equitable and accessible care to the current and future generations. PUBLIC CONTRIBUTION: This discursive paper is intended to inform the different stakeholders in nursing practice, research, education and policy to support and invest in the advanced education of paediatric nurses for attainment of the SDGs.

Race-conscious serious illness communication: An interpersonal tool to dismantle racism in practice and research.

BACKGROUND: Racism significantly contributes to inequitable care quality and outcomes for people of color with serious illness, their families, and their communities. Clinicians use serious illness communication (SIC) to foster trust, elicit patients' needs and values, and deliver goal-concordant services. Current SIC tools do not actively guide users to incorporate patients' experiences with racism into care. OBJECTIVES: 1) To explicitly address racism during SIC in the context of the patient's lived experience and 2) to provide race-conscious SIC recommendations for clinicians and researchers. METHODS: Applying the conceptual elements of Public Health Critical Race Praxis to SIC practice and research through reflection on inclusive SIC approaches and a composite case. RESULTS: Patients' historical and ongoing narratives of racism must be intentionally welcomed in physically and psychologically safe environments by leveraging empathic communication opportunities, forging antiracist palliative care practices, removing interpersonal barriers to promote transparent patient-clinician relationships, and strengthening organizational commitments to strategically dismantle racism. Race-conscious SIC communication strategies, skills, and examples of talking points are provided. DISCUSSION: Race-conscious SIC practices may assist to acknowledge racial dynamics within the patient-clinician encounter. Furthermore, race-conscious SIC may help to mitigate implicit and explicit bias in clinical practices and the exclusionary research cultures that guide them.

Bridging gaps to universal palliative care access in Chile: serious health-related suffering and the cost of expanding the package of care services.

Background: The Lancet Commission on Palliative Care (PC) and Pain Relief quantified the burden of serious health-related suffering (SHS), proposing an Essential Package of PC (EPPC) to narrow the global PC divide. We applied the EPPC framework to analyze PC access in Chile, identify gaps in coverage, and provide recommendations to improve PC access. Methods: Total SHS and population in need of PC was estimated using official 2019 government data. We differentiated between cancer and non-cancer related SHS given guaranteed Chilean PC coverage for cancer. We calculated differences between the Chilean PC package and the Lancet Commission EPPC to estimate the cost of expanding to achieve national coverage of palliative care. Findings: In 2019, nearly 105,000 decedent and non-decedent Chileans experienced SHS with a lower-bound estimate of 12.1 million days and an upper-bound estimate of 42.4 million days of SHS. Each individual experienced between 116 and 520 days of SHS per year. People living with a cancer diagnosis had PC access with financial protection, accounting for almost 42% of patients in need. People with non-cancer diagnoses-about 61 thousand patients-lacked PC coverage. Expanding coverage of the EPPC for all patients in need would cost just above $123 million USD, equivalent to 0.47% of Chilean National Health Expenditure. Interpretation: Achieving universal PC access is urgent and feasible for Chile, classified as a high-income country. Expanding PC services and coverage to the EPPC standard are affordable and critical health system responses to ensuring financial protection for patients with SHS. In Chile, this requires closing large gaps in PC coverage pertaining to patients with non-cancer conditions and treatment of symptoms that go beyond pain. Our research provides an empirical approach for applying the Lancet Commission SHS framework to estimate the cost of achieving national universal PC access anchored in a package of health care services. Funding: This research was partially funded by the Chilean Government through the Fondo Nacional de Ciencia y Tecnología (Fondecyt Regular) grant number 1201721, the U.S. Cancer Pain Relief Committee grant AWD-003806 awarded to the University of Miami and by the University of Miami Institute for Advanced Study of the Americas. We acknowledge NIH/NCI award P30CA008748.

Characterizing caregiving supportive services use by caregiving relationship status.

BACKGROUND: Informal caregivers of older adults experience a high degree of psychosocial burden and strain. These emotional experiences often stem from stressful tasks associated with caregiving. Caregiving supportive services that provide assistance for stressful tasks are instrumental in alleviating caregiving burden and strain. Research is limited on what types of supportive services caregivers are utilizing by relationship status and their source of information regarding these services. We sought to characterize caregiving supportive services use by caregiver relationship status. METHODS: We analyzed cross-sectional data from the 2015 National Study of Caregiving limited to caregivers of older adults ≥65 years of age. Caregiver relationship status (i.e., spouse, child, other relative/non-relative) was the independent variable. Type of supportive service and source of information about supportive services were the dependent variables. Bivariate analyses were performed to examine the association with caregiver relationship status and associations between use of caregiving supportive services and caregiver and care recipient characteristics. Among service users, we measured associations between caregiver relationship status, type of supportive services used, and source of information about supportive services. RESULTS: Our sample consisted of 1871 informal caregivers, 30.7% reported using supportive services. By caregiver relationship status, children had the greatest use of supportive services compared to spouses and other relatives/non-relatives (46.5% vs. 27.6% vs. 25.9%, p = <0.01, respectively). Among users of services, there were no differences in type of services used. Spouses primarily received their information about services from a medical provider or social worker (73.8%, p = <0.001). CONCLUSION: Our findings highlight the need to ensure that other caregiving groups, such as spouses and other relatives/non-relatives, have access to important supportive services such as financial support. Medical providers and/or social workers should be leveraged and equipped to provide this information and refer to services accordingly.

Can You Hear Us Now? Equity in Global Advocacy for Palliative Care.

Evidence-based advocacy underpins the sustainable delivery of quality, publicly guaranteed, and universally available palliative care. More than 60 million people in low- and middle-income countries (LMICs) have no or extremely limited access to either palliative care services or essential palliative care medicines (e.g., opioids) on the World Health Organization Model List. Indeed, only 12% of the global palliative care need is currently being met. Palliative care advocacy works to bring this global public health inequity to light. Despite their expertise, palliative care practitioners in LMICs are rarely invited to health policymaking tables - even in their own countries - and are underrepresented in the academic literature produced largely in the high-income world. In this paper, palliative care experts from Bangladesh, Colombia, Egypt, Sudan, Uganda, and Zambia affiliated with the International Association for Hospice & Palliative Care Advocacy Focal Point Program articulate the urgent need for evidence-based advocacy, focusing on significant barriers such as urban/rural divides, cancer-centeredness, service delivery gaps, opioid formulary limitations, public policy, and education deficits. Their advocacy is situated in the context of an emerging global health narrative that stipulates palliative care provision as an ethical obligation of all health systems. To support advocacy efforts, palliative care evaluation and indicator data should assess the extent to which LMIC practitioners lead and participate in global and regional advocacy. This goal entails investment in transnational advocacy initiatives, research investments in palliative care access and cost-effective models in LMICs, and capacity building for a global community of practice to capture the attention of policymakers at all levels of health system governance.

The 2nd Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to support equity in palliative care access.

OBJECTIVE: On October 5-6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: "Leave No One Behind - Equity in Access to Palliative Care." We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3-4, 2022. METHODS: Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines. SIGNIFICANCE OF RESULTS: The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.

Top Ten Tips Palliative Care Clinicians Should Know About Delivering Antiracist Care to Black Americans.

Racial disparities, including decreased hospice utilization, lower quality symptom management, and poor-quality end-of-life care have been well documented in Black Americans. Improving health equity and access to high-quality serious illness care is a national palliative care (PC) priority. Accomplishing these goals requires clinician reflection, engagement, and large-scale change in clinical practice and health-related policies. In this article, we provide an overview of key concepts that underpin racism in health care, discuss common serious illness disparities in Black Americans, and propose steps to promote the delivery of antiracist PC.

The ICN Global Nursing Leadership Institute: Integrating the SDGs into Leadership and Policy Development.

This article is one in a series in which contributing authors discuss how the United Nations (UN) Sustainable Development Goals (SDGs) are linked to everyday clinical issues; national public health emergencies; and other nursing issues, such as leadership, shared governance, and advocacy. The 2030 Agenda for Sustainable Development, a 15-year plan of action to achieve the goals, was unanimously adopted by all UN member states in September 2015 and took effect on January 1, 2016. The Agenda consists of 17 SDGs addressing social, economic, and environmental determinants of health and 169 associated targets focused on five themes: people, planet, peace, prosperity, and partnership. The SDGs build on the work of the UN Millennium Development Goals, which were in effect from 2000 to 2015. The current article discusses the International Council of Nurses Global Nursing Leadership Institute and its integration of the SDGs into a global leadership and policy development program.

American Academy of Nursing Expert Panel consensus statement on nursing's roles in ensuring universal palliative care access.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. Part I of this consensus paper herein provides the rationale and background to support the policy, education, research, and clinical practice recommendations put forward in Part II. On behalf of the Academy, the evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter. The authors recommend greater investments in palliative nursing education and nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative nurses worldwide. By enacting these recommendations, nurses working in all settings can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations.

Preventing Violence to Achieve Peaceful and Inclusive Societies.

This article is one in a series in which contributing authors discuss how the United Nations (UN) Sustainable Development Goals (SDGs) are linked to everyday clinical issues; national public health emergencies; and other nursing issues, such as leadership, shared governance, and advocacy. The 2030 Agenda for Sustainable Development, a 15-year plan of action to achieve the goals, was unanimously adopted by all UN member states in September 2015 and took effect on January 1, 2016. The Agenda consists of 17 SDGs addressing social, economic, and environmental determinants of health and 169 associated targets focused on five themes: people, planet, peace, prosperity, and partnership. The SDGs build on the work of the UN Millennium Development Goals, which were in effect from 2000 to 2015. The current article highlights SDG 16: "Promote peaceful and inclusive societies for sustainable development, provide access to justice for all, and build effective, accountable, and inclusive institutions at all levels."

Nurses Promoting Inclusive, Safe, Resilient, and Sustainable Cities and Communities: Taking Action on COVID-19, Systemic Racism, and Climate Change.

This article is one in a series in which contributing authors discuss how the United Nations (UN) Sustainable Development Goals (SDGs) are linked to everyday clinical issues; national public health emergencies; and other nursing issues, such as leadership, shared governance, and advocacy. The 2030 Agenda for Sustainable Development, a 15-year plan of action to achieve the goals, was unanimously adopted by all UN member states in September 2015 and took effect on January 1, 2016. The Agenda consists of 17 SDGs addressing social, economic, and environmental determinants of health and 169 associated targets focused on five themes: people, planet, peace, prosperity, and partnership. The SDGs build on the work of the UN Millennium Development Goals, which were in effect from 2000 to 2015. The current article highlights SDG 11-making "cities and human settlements inclusive, safe, resilient and sustainable."

Nurses and Midwives as Global Partners to Achieve the Sustainable Development Goals in the Anthropocene.

PURPOSE: To highlight ongoing and emergent roles of nurses and midwives in advancing the United Nations 17 Sustainable Development Goals by 2030 at the intersection of social and economic inequity, the climate crisis, interprofessional partnership building, and the rising status and visibility of the professions worldwide. DESIGN: Discussion paper. METHODS: Literature review. FINDINGS: Realizing the Sustainable Development Goals will require all nurses and midwives to leverage their roles and responsibility as advocates, leaders, clinicians, scholars, and full partners with multidisciplinary actors and sectors across health systems. CONCLUSIONS: Making measurable progress toward the Sustainable Development Goals is critical to human survival, as well as the survival of the planet. Nurses and midwives play an integral part of this agenda at local and global levels. CLINICAL RELEVANCE: Nurses and midwives can integrate the targets of the Sustainable Development Goals into their everyday clinical work in various contexts and settings. With increased attention to social justice, environmental health, and partnership building, they can achieve exemplary clinical outcomes directly while contributing to the United Nations 2030 Agenda on a global scale and raising the profile of their professions.

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.