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International consensus-based policy recommendations to advance universal palliative care access from the American Academy of Nursing Expert Panels

Published:October 06, 2021DOI:https://doi.org/10.1016/j.outlook.2021.06.018

      Abstract

      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. On behalf of the Academy, these 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. Through improved palliative nursing education, nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative care nurses worldwide, nurses can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations. Part II herein provides a summary of international responses and policy options that have sought to enhance universal palliative care and palliative nursing access to date. Additionally, we provide ten policy, education, research, and clinical practice recommendations based on the rationale and background information found in Part I. 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.

      Keywords

      Introduction

      Universally accessible and integrated palliative care across the serious illness trajectory is globally recognized as a human right and essential aspect of universal health coverage (UHC) (
      • Knaul F.M.
      • Farmer P.E.
      • Krakauer E.L.
      • De Lima L.
      • Bhadelia A.
      • Kwete Jiang
      • X Arreola-Ornelas
      • H Gómez-Dantés
      • O Rodriguez
      • N.M Alleyne
      • G Connor
      • S R.
      • Hunter D.J.
      • Lohman D.
      • Radbruch L.
      • Del Rocío Sáenz Madrigal M.
      • Atun R.
      • Foley K.M.
      • Frenk J.
      • Jamison D.T.
      • Rajagopal M.R.
      Lancet Commission on Palliative Care and Pain Relief Study Group
      Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.
      ;
      United Nations (UN)
      Political declaration of the high-level meeting on universal health coverage. “Universal health coverage: moving together to build a healthier world.”.
      ; World Health Organization [
      World Health Organization (WHO)
      Strengthening of palliative care as a component of integrated treatment within the continuum of care.
      ,
      World Health Organization (WHO)
      Integrating palliative care and symptom relief into primary health care: a WHO guide for planners, implementers, and managers.
      a,
      World Health Organization (WHO)
      Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers.
      b). The Global Atlas of Palliative Care reports that only 12% of the global palliative care need is currently being met; 64% of countries have extremely limited or no provision of palliative care services; about 75% of unmet palliative care needs for adults are in low- and middle-income countries; roughly 7% of the world's population in need of palliative care are children; and more than 80% of countries have no or unacceptably low access to controlled essential medicines, such as opioids and benzodiazepines, for pain and symptom relief (). Researchers estimate that the global burden of serious health-related suffering (SHS) requiring palliative care at the end of life will escalate about 87% by the year 2060, disproportionately impacting those living in low-income countries, those age 70 and over, and other at-risk groups (
      • Sleeman K.E.
      • de Brito M.
      • Etkind S.
      • Nkhoma K.
      • Guo P.
      • Higginson I.J.
      • Gomes B.
      • Harding R.
      The escalating global burden of serious SHS: projections to 2060 by world regions, age groups, and health conditions.
      ;
      • Sleeman K.E.
      • Gomes B.
      • de Brito M.
      • Shamieh O.
      • Harding R.
      The burden of serious health-related suffering among cancer decedents: Global projections study to 2060.
      ). The COVID-19 pandemic has exacerbated suffering and mortality globally and, thus, the need for increased access to palliative care and palliative nursing for all populations at all stages of serious illness, from the time of diagnosis into bereavement (
      • De Lima L.
      • Pettus K.
      • Downing J.
      • Connor S.
      • Marston J
      Palliative care and COVID-19 series – Briefing notes compilation.
      ;
      • Rosa W.E.
      • Gray T.F.
      • Chow K.
      • Davidson P.M.
      • Dionne-Odom J.N.
      • Karanja V.
      • Khanyola J.
      • Kpoeh J.
      • Lusaka J.
      • Matula S.T.
      • Mazanec P.
      • Moreland P.J.
      • Pandey S.
      • de Campos A.P.
      • Meghani S.H.
      Recommendations to leverage the palliative nursing role during COVID-19 and future public health crises.
      ).
      The benefits of palliative care have been empirically validated and include the alleviation of patient symptom burdens and improvement of caregiver outcomes in serious illness (Dionne-Odom et al., 2015;
      • Quinn K.L.
      • Shurrab M.
      • Gitau K.
      • Kavalieratos D.
      • Isenberg S.R.
      • Stall N.M.
      • Stukel T.A.
      • Goldman R.
      • Horn D.
      • Cram P.
      • Detsky A.S.
      • Bell C.M.
      Association of receipt of palliative care interventions with health care use, quality of life, and symptom burden among adults with chronic noncancer illness: a systematic review and meta-analysis.
      ;
      • Kavalieratos D.
      • Corbelli J.
      • Zhang D.
      • Dionne-Odom J.N.
      • Ernecoff N.C.
      • Hanmer J.
      • Hoydich Z.P.
      • Ikejiani D.Z.
      • Klein-Fedyshin M.
      • Zimmermann C.
      • Morton S.C.
      • Arnold R.M.
      • Heller L.
      • Schenker Y.
      Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis.
      ); reduction of healthcare utilization and subsequent health costs (
      • Lustbader D.
      • Mudra M.
      • Romano C.
      • Lukoski E.
      • Chang A.
      • Mittelberger J.
      • Scherr T.
      • Cooper D.
      The impact of a home-based palliative care program in an accountable care organization.
      ); enhanced decision-making processes for patients and families (
      • Baik D.
      • Cho H.
      • Masterson Creber R.M.
      examining interventions designed to support shared decision making and subsequent patient outcomes in palliative care: a systematic review of the literature.
      ;
      • Connolly T.
      • Coats H.
      • DeSanto K.
      • Jones J.
      The experience of uncertainty for patients, families and healthcare providers in post-stroke palliative and end-of-life care: a qualitative meta-synthesis.
      ); and increased clinician satisfaction through additional expertise and assistance with clinically difficult cases (
      • Tartaglione E.V.
      • Vig E.K.
      • Reinke L.F.
      Bridging the cultural divide between oncology and palliative care subspecialties: clinicians' perceptions on team integration.
      ). Despite well-recognized advantages of palliative care access, global barriers remain varied and substantial. These obstacles include misunderstandings about palliative care; nonexistent or underdeveloped hospice and palliative care programs; opioid stigma and restrictive policies pertaining to international access and equitable distribution of internationally controlled essential medicines; lack of specialist palliative care training and human resources; cultural and/or religious stigma about death, dying, and palliative care; marginalization of poor, minoritized, and other underserved groups; lack of palliative care education for the public; an overemphasis on curative models of care; and other socioeconomic, political, and health inequities (;
      • Daniels A.
      • Downing J.
      Increasing access to children's palliative care education through e-learning: a review of the ICPCN experience.
      ;
      • Knaul F.M.
      • Farmer P.E.
      • Krakauer E.L.
      • De Lima L.
      • Bhadelia A.
      • Kwete Jiang
      • X Arreola-Ornelas
      • H Gómez-Dantés
      • O Rodriguez
      • N.M Alleyne
      • G Connor
      • S R.
      • Hunter D.J.
      • Lohman D.
      • Radbruch L.
      • Del Rocío Sáenz Madrigal M.
      • Atun R.
      • Foley K.M.
      • Frenk J.
      • Jamison D.T.
      • Rajagopal M.R.
      Lancet Commission on Palliative Care and Pain Relief Study Group
      Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.
      ).
      There are an estimated 28 million nurses globally who account for about 59% of the healthcare workforce (
      World Health Organization (WHO)
      State of the world's nursing 2020: investing in education, jobs and leadership.
      ). However, the roles and responsibilities of nurses in expanding access to both generalist and specialist palliative care are not always made explicit in the global health context (
      • Rosa W.E.
      • Davidson P.M.
      Coronavirus disease 2019 (COVID-19): strengthening our resolve to achieve universal palliative care.
      ;
      • Rosa W.E.
      • Krakauer E.L.
      • Farmer P.E.
      • Karanja V.
      • Davis S.
      • Crisp N.
      • Rajagopal M.R.
      The global nursing workforce: realising universal palliative care.
      ). This paper provides an overview of international responses and policy options that have been used to develop palliative care programs and services, the stance of the American Academy of Nursing, and ten key evidence-based recommendations across multiple domains of practice that can support nurses and invested partners and stakeholders to achieve enhanced palliative care access. This manuscript is the second of a two-part consensus statement. The first paper is entitled, "American Academy of Nursing Expert Panel Consensus Statement on Nursing's Roles in Ensuring Universal Palliative Care Access."

      International Responses and Policy Options to Enhance Universal Palliative Care Access

      Responses

      Several multi-level and multi-stakeholder responses to close global palliative care gaps are taking place worldwide. The following five areas with links to nursing are briefly highlighted, including symptom management and access to essential medicines, fostering international collaborations, the challenges to palliative care posed by COVID-19, both generalist and specialty palliative nursing workforce development, and developing country-specific national palliative care strategies.

      Symptom Management and Access to Essential Medicines

      The Lancet Commission on Global Access to Palliative Care and Pain Relief called for improved international policies to facilitate access to necessary opioid analgesics for the seriously ill while limiting nonmedical misuse (
      • Knaul F.M.
      • Farmer P.E.
      • Krakauer E.L.
      • De Lima L.
      • Bhadelia A.
      • Kwete Jiang
      • X Arreola-Ornelas
      • H Gómez-Dantés
      • O Rodriguez
      • N.M Alleyne
      • G Connor
      • S R.
      • Hunter D.J.
      • Lohman D.
      • Radbruch L.
      • Del Rocío Sáenz Madrigal M.
      • Atun R.
      • Foley K.M.
      • Frenk J.
      • Jamison D.T.
      • Rajagopal M.R.
      Lancet Commission on Palliative Care and Pain Relief Study Group
      Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.
      ). The commission envisioned a low-cost and universally available “essential package” to improve access to affordable opioids (e.g., morphine) and other medicines for common symptoms (e.g., shortness of breath, pain, nausea, vomiting). A widely accessible essential package is critical to support nurses in severely resource-constrained settings who may not otherwise be able to relieve patients’ SHS.
      COVID-19 has escalated shortages of opioids and benzodiazepines (e.g., midazolam) used during ventilation across global health systems (
      • Ahmed E.
      • Cleary J.
      • DeLima L.
      • Mattfeld E.
      • Pettus K.
      • Radbruch L.
      • Rajagopal M.R.
      Global availability of internationally controlled medicines – Briefing Note. Global Palliative Care and Covid-19 Series.
      ;
      • Pettus K.
      • Cleary J.F.
      • de Lima L.
      • Ahmed E.
      • Radbruch L.
      Availability of internationally controlled essential medicines in the COVID-19 pandemic.
      ). The World Health Organization (
      World Health Organization (WHO)
      Scoping document: WHO guidelines on ensuring balanced national policies for access and safe use of controlled medicines.
      ) is currently working on guidelines to improve access to essential medicines including opioid analgesics. These guidelines will replace the previous 2011 and 2012 controlled substance guidelines in light of more recent global disparities evidence. The guidelines development group is co-chaired by a nurse. The opioid addiction epidemic in countries like the United States have led to restrictive global policies in many parts of the world that complicate access to these controlled medicines for symptom management purposes (
      • Knaul F.M.
      • Farmer P.E.
      • Krakauer E.L.
      • De Lima L.
      • Bhadelia A.
      • Kwete Jiang
      • X Arreola-Ornelas
      • H Gómez-Dantés
      • O Rodriguez
      • N.M Alleyne
      • G Connor
      • S R.
      • Hunter D.J.
      • Lohman D.
      • Radbruch L.
      • Del Rocío Sáenz Madrigal M.
      • Atun R.
      • Foley K.M.
      • Frenk J.
      • Jamison D.T.
      • Rajagopal M.R.
      Lancet Commission on Palliative Care and Pain Relief Study Group
      Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.
      ).

      Fostering International Collaborations

      Nurses are an integral part of many international palliative care collaborations underway and are actively integrating a nursing perspective into partnership planning and policy advocacy. In May 2019, The Berlin Declaration affirmed the collaborative organizational commitments of the International Association for Hospice & Palliative Care (IAHPC), International Children's Palliative Care Network (ICPCN), and Worldwide Hospice Palliative Care Alliance (WHPCA) to partner with regional and national associations to: (a) identify progress and challenges in their respective settings; (b) provide information on high-level developments affecting palliative care practices and policies; and c) ensure the delivery of consistent messaging to United Nations (UN) agencies, regional/national associations, providers, and users (
      • Connor S.R.
      • De Lima L.
      • Downing J.
      • Ling J.
      • Quilliam P.
      • Radbruch L.
      The Berlin Declaration: A collaborative roadmap to advance global hospice and palliative care.
      ). In addition, international academic institutions and interprofessional leaders recently merged resources to initiate and advance an interdisciplinary working group to advocate universal palliative care and pain relief access through the ; (
      • Rosa W.E.
      • White M.T.
      • Ahern L.N.
      • Cleary J.F.
      • Grant L.
      • Martin K.
      • Mwebesa E.
      • Ntizimira C.
      • Stoltenberg M.
      • Abedini N.C.
      An interdisciplinary working group to advocate universal palliative care and pain relief access.
      ).

      COVID-19

      Palliative care and palliative nursing have long been an aspect of public health emergency and humanitarian crisis management (Institute of Medicine [
      Institute of Medicine (IOM)
      Guidance for establishing crisis standards of care for use in disaster situations: A letter report.
      ,
      Institute of Medicine (IOM)
      Crisis standards of care: Summary of a workshop series.
      ,
      Institute of Medicine (IOM)
      Crisis standards of care: A systems framework for catastrophic disaster response: Volume 1: Introduction and CSC framework.
      ;
      • Knaul F.M.
      • Farmer P.E.
      • Krakauer E.L.
      • De Lima L.
      • Bhadelia A.
      • Kwete Jiang
      • X Arreola-Ornelas
      • H Gómez-Dantés
      • O Rodriguez
      • N.M Alleyne
      • G Connor
      • S R.
      • Hunter D.J.
      • Lohman D.
      • Radbruch L.
      • Del Rocío Sáenz Madrigal M.
      • Atun R.
      • Foley K.M.
      • Frenk J.
      • Jamison D.T.
      • Rajagopal M.R.
      Lancet Commission on Palliative Care and Pain Relief Study Group
      Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.
      ;
      • Lamontagne F.
      • Fowler R.A.
      • Adhikari N.K.
      • Murthy S.
      • Brett-Major D.M.
      • Jacobs M.
      • Uyeki T.M.
      • Vallenas C.
      • Norris S.L.
      • Fischer 2nd, W.A.
      • Fletcher T.E.
      • Levine A.C.
      • Reed P.
      • Bausch D.G.
      • Gove S.
      • Hall A.
      • Shepherd S.
      • Siemieniuk R.A.
      • Lamah M.C.
      • Kamara R.
      • Guyatt G.H.
      Evidence-based guidelines for supportive care of patients with Ebola virus disease.
      ;
      • Matzo M.
      • Wilkinson A.
      • Lynn J.
      • Gatto M.
      • Phillips S.
      Palliative care considerations in mass casualty events with scarce resources.
      ;
      ). Palliative care access has become increasingly urgent since the onset of the novel SARS-CoV-2 virus and in anticipation of future public health emergencies. Throughout the pandemic, advocates have called for increased international awareness for all nurses, nurse employers, and interdisciplinary and intersectoral partners to:
      The IAHPC, ICPCN, WHPCA, and the Palliative Care in Humanitarian Aid Situations and Emergencies Network (PalCHASE) brought together 124 experts from 27 countries to disseminate global palliative care recommendations across a host of topics, including recommendations for the international nursing community (
      • De Lima L.
      • Pettus K.
      • Downing J.
      • Connor S.
      • Marston J
      Palliative care and COVID-19 series – Briefing notes compilation.
      ). Moreover, these groups provided a joint webinar series to further develop and foster knowledge for the international palliative care community (
      International Association for Hospice and Palliative Care (IAHPC)
      Resources relevant to palliative care and COVID-19.
      ).

      Generalist and Specialty Palliative Nursing Workforce Development

      Community health workers and volunteers are critical to health, social, and palliative care delivery in many low- and middle-income countries (LMICs). Nurses can assume leadership roles in advocacy, training, orienting, and building workforce capacity of palliative care knowledge and skills among all clinicians and community health workers. In addition, nurses at all levels are well-positioned to partner with multisector stakeholders to ensure the delivery of high-quality interdisciplinary palliative care (

      Dahlin, C., Coyne, P.J., & Ferrell, B.R. (Eds.). (2016). Advanced practice palliative nursing.New York, NY: Oxford University Press.

      ;
      • Ferrell B.R.
      • Paice J.A
      Oxford textbook of palliative nursing.
      ). Long-term, sustainable academic practice partnerships between LMICs and high-income countries are essential to support palliative nursing capacity building, mutual learning, and palliative care development worldwide (
      • Malloy P.
      • Ferrell B.
      • Virani R.
      • Mazanec P.
      Promoting palliative care internationally: building leaders to promote education, practice, and advocacy.
      ; ;
      • Rosa W.E.
      • Male M.A.
      • Uwimana P.
      • Ntizimira C.R.
      • Sego R.
      • Nankundwa E.
      • Byiringiro S.
      • Nsereko E.
      • Moreland P.J.
      The advancement of palliative care in Rwanda: Transnational partnerships and educational innovation.
      ).
      Nursing education standards vary from country to country. A number of models have been used in countries such as Romania, Serbia, Kenya, Rwanda, Uganda, and Zambia to facilitate access to undergraduate and graduate education in palliative nursing at generalist and specialist levels, particularly in LMICs (
      • Grant L.
      • Downing J.
      • Luyirika E.
      • Murphy M.
      • Namukwaya L.
      • Kiyange F.
      • Atieno M.
      • Kemigisha-Ssali E.
      • Hunt J.
      • Snell K.
      • Murray S.A.
      • Leng M.
      Integrating palliative care into national health systems in Africa: a multi-country intervention study.
      ;
      • Milicevic N.
      • Haraldsdottir E.
      • Lukic N.
      • Baskott J.
      • Rayment C.
      • Downing J.
      Palliative care development in Serbia, five years after the national strategy.
      ;
      • Mosoiu D.
      • Mitrea N.
      • Dumitrescu M.
      Palliative care in Romania.
      ;
      • Snell K.
      • Leng M.
      • Downing J.
      • Barnard A.
      • Murray S.
      • Grant L.
      A palliative care curriculum toolkit: A practical guide to integrative palliative care into helath professional education.
      ). Global educational initiatives, such as the End-of-Life Nursing Education Consortium (ELNEC), have demonstrated scalability and adaptability to promote global access to generalist and specialist palliative care competency development across nursing and advanced practice nursing specialties in both high- and low-resource countries. As a result of their advocacy since 2000, over 30,720 nurses and other health and social care professionals have completed an in-person train-the-trainer or online ELNEC training course (
      End-of-Life Nursing Education Consortium (ELNEC)
      End-of-Life Nursing Education Consortium (ELNEC) fact sheet.
      a). These trained professionals represent all fifty United States and 100 countries. Through ELNEC's influence on educational policy, over 500 undergraduate and 200 graduate programs in schools of nursing have accessed ELNEC online curricula. This has led to more than 50,000 nursing students completing the online course. Since initiated, it is estimated that
      End-of-Life Nursing Education Consortium (ELNEC)
      End-of-Life Nursing Education Consortium (ELNEC) fact sheet.
      a) trainers have returned to their countries and settings to educate over 738,500 nurses and other health and social care providers.
      End-of-Life Nursing Education Consortium (ELNEC)
      ELNEC support for nurses during COVID-19.
      b) has also been vital to developing globally accessible nursing-specific palliative care educational resources to address COVID-19 needs across a host of clinical practice, research, and policy domains.

      Developing a Country-Specific National Strategy

      Although the generation of evidence in one country does not always translate to another, many governments and national associations are responding to the need for increased strategic planning related to palliative nursing and enhanced palliative care access. In low-income countries, such as Uganda, scopes of practice for nurses who received six months of advanced education in palliative care and pain relief were expanded to include evidence-based prescribing of morphine. Outcomes included a significant increase in community-based palliative nursing care access throughout the country (
      • Knaul F.M.
      • Farmer P.E.
      • Krakauer E.L.
      • De Lima L.
      • Bhadelia A.
      • Kwete Jiang
      • X Arreola-Ornelas
      • H Gómez-Dantés
      • O Rodriguez
      • N.M Alleyne
      • G Connor
      • S R.
      • Hunter D.J.
      • Lohman D.
      • Radbruch L.
      • Del Rocío Sáenz Madrigal M.
      • Atun R.
      • Foley K.M.
      • Frenk J.
      • Jamison D.T.
      • Rajagopal M.R.
      Lancet Commission on Palliative Care and Pain Relief Study Group
      Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.
      ). In the upper middle-income nation of Lebanon, nurses have been at the forefront of advancing national strategic palliative care responses. For example, the mandate leading to the development of the National Committee for Pain Relief and Palliative Care in Lebanon in 2011 was co-authored by a palliative nurse. Currently, the Vice President of the committee is a nurse and nurse members are active in spearheading initiatives on behalf of the committee's five working groups, including education, policy, research, service, and opioids (
      • Daher M.
      Palliative care in Lebanon. Where are we now? Where are we going?.
      ;
      World Health Organization Eastern Mediterranean Regional Office Palliative Care Expert Network
      Summary of actions to date.
      ).
      High-income countries like Australia have advanced a national palliative care strategy with admirable success over the past decade, acknowledging the need for more nurses to be educated in palliative care (). In the United States, the
      American Nurses Association & Hospice & Palliative Nurses Association
      released a call to action emphasizing the need for every nurse to deliver generalist palliative care, regardless of setting. Recommendations per the ANA and HPNA (2017) for the United States include, but are not limited to: (a) adopting the ELNEC curricula as the standard for generalist palliative nursing education, (b) petitioning accreditation bodies to increase palliative care content on pre-licensure exams, (c) advocating for specialty organizations to develop position papers and resources that support generalist palliative nursing and generalist advanced practice palliative nursing, (d) including nurses at decision-making and policy-making tables to address palliative care needs, and (e) funding palliative care models and research to advance palliative nursing across settings.

      Policy Options

      Nurses are primed at an international level to expand practice and policy roles and engage multisector stakeholders to achieve palliative care for all in need as an aspect of UHC (
      All-Party Parliamentary Group on Global Health (APPG)
      Triple impact: How investing in nursing will improve health, improve gender equality and support economic growth.
      ;
      • Crisp N.
      • Brownie S.
      • Refsum C.
      Nursing and midwifery: The key to the rapid and cost-effective expansion of high-quality universal health coverage.
      ;
      International Council of Nurses (ICN)
      Nurses: A voice to lead: Health for all.
      ,
      End-of-Life Nursing Education Consortium (ELNEC)
      End-of-Life Nursing Education Consortium (ELNEC) fact sheet.
      ;
      • Rosa W.E.
      • Hannaway C.J.
      • McArdle C.
      • McManus M.F.
      • Alharahsheh S.T.
      • Marmot M.
      Nurses for health equity: Guidelines for tackling the social determinants of Health. Qatar, UAE: World Innovation Summit for Health.
      ;
      World Health Organization (WHO)
      State of the world's nursing 2020: investing in education, jobs and leadership.
      ,
      • Rosa W.E.
      • Hannaway C.J.
      • McArdle C.
      • McManus M.F.
      • Alharahsheh S.T.
      • Marmot M.
      Nurses for health equity: Guidelines for tackling the social determinants of Health. Qatar, UAE: World Innovation Summit for Health.
      ). As nurses advocate for the human right to palliative care they should make concerted efforts to develop multisector partnerships to lead and promote a palliative nursing agenda throughout health systems, long-term care, and community-based settings. Using evidence-based advocacy is critical to palliative care integration and funding that will support program development and palliative care clinician training (
      • Rosa W.E.
      • Pettus K.I.
      • De Lima L.
      • Silvers A.
      • Sinclair S.
      • Radbruch L.
      Top ten tips palliative clinicians should know about evidence-based advocacy.
      ).
      Nurses should be aware of the data showing that publicly funded palliative care can mitigate health inequities and improve the quality of healthcare for at-risk and marginalized populations (
      • Knaul F.M.
      • Farmer P.E.
      • Krakauer E.L.
      • De Lima L.
      • Bhadelia A.
      • Kwete Jiang
      • X Arreola-Ornelas
      • H Gómez-Dantés
      • O Rodriguez
      • N.M Alleyne
      • G Connor
      • S R.
      • Hunter D.J.
      • Lohman D.
      • Radbruch L.
      • Del Rocío Sáenz Madrigal M.
      • Atun R.
      • Foley K.M.
      • Frenk J.
      • Jamison D.T.
      • Rajagopal M.R.
      Lancet Commission on Palliative Care and Pain Relief Study Group
      Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.
      ). Options discussed here include policies related to education, clinical practice, research, leadership, and advocacy. There are several policy levers that can be used to advance dialogues and measurable outcomes regarding palliative care availability. For instance, both clinican-oriented and publicly-directed education can raise awareness of palliative care benefits at individual and societal levels, eliciting increased fiscal support and funding streams can assist in program development, and capacity building can promote additional human resources to deliver palliative care services. These policy levers should be considered while reflecting on the policy options addressed below, as well as the consensus-based recommendations provided at the conclusion of this paper.

      Education for All Stakeholders

      Education of the public, policy makers, and clinicians from diverse specialties is fundamental to advancing nursing's role in achieving universal palliative care access. This includes nurse-led dissemination of education to ensure that interdisciplinary health and social care colleagues properly understand the tenets of palliative care. It is important to know where palliative care falls within the pervasive biomedical system, and to develop familiarity with insurance and reimbursement models. Education should also describe how to best engage collaboration between specialist palliative nurses and general care clinicians, teams, and other specialists. Nurses must be equipped to educate policymakers, health leaders, investors, relevant non-governmental organizations (NGOs), and the public about palliative care, including how it can alleviate SHS and improve physical, cognitive, and social function for those confronting serious illness. Furthermore, educational policies should support palliative care that fully engages all relevant disciplines (e.g., nursing, medicine, social work, chaplaincy, pharmacy) and is inclusive of robust partnerships with non-nursing organizations.

      Clinical Practice and Research

      In addition to the generalist skills discussed previously (e.g., symptom management, advance care planning), nurses’ communication training across global settings must be enhanced to ensure they are able to elicit patients’ and families’ goals, values, and preferences while considering health literacy and language sensitivity and adequately addressing ethical challenges (
      • Ferrell B.
      • Buller H.
      • Paice J.A.
      Communication skills: Use of the interprofessional communication curriculum to address physical aspects of care.
      ;
      • Koch A.
      • Mantzouris S.
      Nurses' role in providing comprehensive communication, prognostication, and palliative care during the COVID-19 pandemic.
      ; Moir et al., 2015;
      National Academies of Sciences, Engineering, and Medicine
      Health literacy and palliative care: Workshop summary.
      ). Nurses must respond sensitively to patients’ and families’ cultural and spiritual needs, providing respectful care that is reflective of the community being served (
      • Fang M.L.
      • Sixsmith J.
      • Sinclair S.
      • Horst G.
      A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review.
      ). Policies must promote palliative nurse training adapted to the given context and patient population in order to yield positive outcomes. For instance, young adults with cancer have unique needs and perceptions related to palliative care (
      • Avery J.
      • Mosher P.J.
      • Kassam A.
      • Srikanthan A.
      • D'Agostino N.
      • Zimmermann C.
      • Castaldo Y.
      • Aubrey R.
      • Rodrigues C.M.
      • Thavaratnam A.
      • Samadi M.
      • Al-Awamer A.
      • Gupta A.
      Young adult experience in an outpatient interdisciplinary palliative care cancer clinic.
      ). Increased funding mechanisms for nurse-led palliative care research, particularly at the intersection of health inequities for at-risk groups, is essential to the development of evidence-based interventions that empirically demonstrate effective palliative nursing outcomes, as well as associated socioeconomic and humanistic impact.
      Given their inherent biopsychosocial training, nurses are well-positioned to promote a truly holistic approach to symptom management that is in alignment with palliative care philosophy. This includes the use of complementary and integrative medicine (CIM) interventions to alleviate the anxiety associated with SHS and mitigate the intensity of a broad range of symptoms (
      • Katseres J.
      • Rosa W.E.
      Integrative nursing in palliative care and end-of-life.
      ;
      • Keegan L.
      • Drick C.A.
      Peaceful transitions at the end of life.
      ;
      • Meyer M.A.
      • Ring M.
      Complementary and integrative therapies in palliative care.
      ). Researchers have shown that CIM education in palliative care is feasible, enhances communication and palliative care clinical skills, and facilitates person-centered care (
      • Ben-Arye E.
      • Keshet Y.
      • Livas M.
      • Breitkreuz T.
      Crossing the death threshold: experiencing multi-disciplinary end-of-life integrative oncology training.
      ;
      • Ben-Arye E.
      • Portalupi E.
      • Keshet Y.
      • Bonucci M.
      • Can G.
      • Kading Y.
      • Samuels N.
      • Livas M.
      • Gressel O.
      • Silbermann M.
      • Breitkreuz T.
      Enhancing palliative care with mindful touch: Impact of a manual and movement therapy training program in an international multidisciplinary integrative oncology setting.
      ). Although access to CIM has many challenges, including limited global availability in resource-constrained settings, lack of insurance coverage, and high cost, palliative nurses may be pivotal in expanding its pragmatic use in practice. For example, educating caregivers to provide holistic symptom management interventions may improve comfort measures. Policies that promote CIM training, use, and empirical validation should be enacted wherever possible.

      Organizational Leadership and Advocacy

      Palliative nurses should be included in strategic planning at institutional, local, regional, national, and international levels to ensure palliative care priorities are integrated throughout health and social care services to meet individual and population health needs. Nurses need to be developed and supported as leaders in alignment with the Nursing Now campaign and the WHO Year of the Nurse and the Midwife, which can often be challenging within more hierarchical systems and cultures (
      All-Party Parliamentary Group on Global Health (APPG)
      Triple impact: How investing in nursing will improve health, improve gender equality and support economic growth.
      ;
      • Crisp N.
      • Brownie S.
      • Refsum C.
      Nursing and midwifery: The key to the rapid and cost-effective expansion of high-quality universal health coverage.
      ; ;
      • Rosa W.E.
      • Hannaway C.J.
      • McArdle C.
      • McManus M.F.
      • Alharahsheh S.T.
      • Marmot M.
      Nurses for health equity: Guidelines for tackling the social determinants of Health. Qatar, UAE: World Innovation Summit for Health.
      ;
      World Health Organization (WHO)
      State of the world's nursing 2020: investing in education, jobs and leadership.
      ,
      World Health Organization (WHO)
      The WHO global strategic directions for nursing and midwifery (2021-2025).
      ). Nurses are integral to improved public health education regarding the definition and appropriate uses of palliative care. Engaging national and international associations, such as the ICN and WHO, to support required generalist palliative nursing skills and pathways for palliative care service formation and advancement is essential to facilitate a substantive response from local organizations, schools of nursing, and health systems. Interdisciplinary and multisectoral collaboration to enact and promote evidence-based advocacy efforts Iis key (
      • Rosa W.E.
      • Pettus K.I.
      • De Lima L.
      • Silvers A.
      • Sinclair S.
      • Radbruch L.
      Top ten tips palliative clinicians should know about evidence-based advocacy.
      ).

      The Academy's Position

      The affirms the urgent need for nurses worldwide to fully engage and assume leadership roles in ensuring universal access to palliative care. The person-, family-, and community-centered philosophy and practice of palliative care reflects and elevates the vision, mission, and values of the Academy (). Advancing the roles and responsibilities of nursing to ensure universal palliative care access is aligned with the Academy's 2021-2022 Policy Priorities (Table 1;
      American Academy of Nursing (AAN)
      Academy policy priorities.
      ). Furthermore, the recommendations of this consensus paper align with several objectives of the Academy's 2021-2024 Strategic Plan (), including but not limited to:
      • Goal 1, Objective 1: Disseminate, through collaborative partnerships with key policy stakeholders, nursing knowledge that will inform sound and sustainable transformation addressing wellness, health promotion, behavioral health, and serious illness.
      • Goal 2, Objective 2: Amplify the voice of nursing science in national and global conversations setting the direction of health and health care research priorities.
      • Goal 3, Objective 3: Convene dialogues to generate creative and collaborative solutions to complex challenges in health and health care.
      • Goal 4, Objective 3: Leverage opportunities to raise diverse perspectives that elevate nursing and the Academy's inclusivity.
      Table 1Alignment of Palliative Nursing and the American Academy of Nursing's 2021-2022 Policy Priorities.
      Academy Policy Priorities 2021–2022

      ()

      Examples Related to Palliative Nursing Care

      Advance Health Equity and Champion WellnessIndividualize palliative care services through a person-centered approach

      Increase the role and visibility of nurses to improve palliative care integration throughout the care continuum

      Deliver high-quality palliative care to populations at-risk (e.g., neonates, infants, children, and older persons; persons experiencing homelessness; incarceration; cognitive, physical, and/or mental disabilities; substance use; and minoritized identities of race, ethnicity, culture, sexuality, and gender)

      Assess and attend to the social determinants of health as a component of holistic palliative nursing

      Promote Innovation and SustainabilityAdvocate that nurses be legally protected to practice to the full extent of licensure and education

      Promote novel nurse-led initiatives in schools, places of work and worship, and community centers

      Increase development and uptake of nurse-led telehealth models and other emerging technologies where available throughout the palliative care continuum

      Leverage local models of palliative care delivery that are suited to the context and utilize available resources

      Invest in palliative nursing research, science, and leadership development

      Reduce Patient, Provider, and System BurdenOptimize quality palliative nursing care starting at the time of serious illness diagnosis

      Prioritize patient, family, and community values in care planning and decision-making

      Foster self-stewardship models for nurses to sustain them in delivering palliative care and minimize burnout and moral distress
      These recommendations also advance previous policy work of the Academy, including recommendations to expand nursing's role in responding to global pandemics (
      • Corless I.B.
      • Nardi D.
      • Milstead J.A.
      • Larson E.
      • Nokes K.M.
      • Orsega S.
      • Kurth A.E.
      • Kirskey K.M.
      • Woith W.
      Expanding nursing's role in responding to global pandemics 5/14/2018.
      ) and to strengthen the public health infrastructure and protect the health of communities and populations (
      • Kub J.
      • Kulbok P.
      • Miner S.
      • Merrill J.
      American Academy of Nursing Policy: increasing the capacity of public health nursing to strengthen the public health infrastructure and to promote and protect the health of communities and population.
      ).
      The following recommended actions are consistent with
      World Health Organization (WHO)
      Strengthening of palliative care as a component of integrated treatment within the continuum of care.
      ,
      World Health Organization (WHO)
      Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers.
      ,
      World Health Organization (WHO)
      Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers.
      ) acknowledgment of palliative care access as a human right, the findings and recommendations of the Lancet Commission report (
      • Knaul F.M.
      • Farmer P.E.
      • Krakauer E.L.
      • De Lima L.
      • Bhadelia A.
      • Kwete Jiang
      • X Arreola-Ornelas
      • H Gómez-Dantés
      • O Rodriguez
      • N.M Alleyne
      • G Connor
      • S R.
      • Hunter D.J.
      • Lohman D.
      • Radbruch L.
      • Del Rocío Sáenz Madrigal M.
      • Atun R.
      • Foley K.M.
      • Frenk J.
      • Jamison D.T.
      • Rajagopal M.R.
      Lancet Commission on Palliative Care and Pain Relief Study Group
      Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.
      ), and multiple international initiatives and reports to raise the status and profile of nursing to achieve UHC (
      All-Party Parliamentary Group on Global Health (APPG)
      Triple impact: How investing in nursing will improve health, improve gender equality and support economic growth.
      ;
      • Crisp N.
      • Brownie S.
      • Refsum C.
      Nursing and midwifery: The key to the rapid and cost-effective expansion of high-quality universal health coverage.
      ;
      International Council of Nurses (ICN)
      Nurses: A voice to lead: Nursing the world to health.
      ; ;
      • Rosa W.E.
      • Hannaway C.J.
      • McArdle C.
      • McManus M.F.
      • Alharahsheh S.T.
      • Marmot M.
      Nurses for health equity: Guidelines for tackling the social determinants of Health. Qatar, UAE: World Innovation Summit for Health.
      ;
      World Health Organization (WHO)
      State of the world's nursing 2020: investing in education, jobs and leadership.
      ,
      World Health Organization Eastern Mediterranean Regional Office Palliative Care Expert Network
      Summary of actions to date.
      ). Indeed, achieving universal palliative care access through the optimization of the nursing workforce is a global public health priority of the highest order.

      Recommendations

      The AAN supports nurses, policy makers, government representatives, professional associations, and interdisciplinary, intersectoral, and community partners working in all settings and nations to take evidence-informed action on the following recommendations (Table 2). Stakeholders include but are not limited to:
      • Global organizations and campaigns, such as the WHO, ICN, IAHPC, WHPCA, ICPCN, PalChase, Sigma Theta Tau International Honor Society of Nursing, Commonwealth Nurses and Midwives Federation (CNMF), Nursing Now, Consortium of Universities for Global Health (CUGH), and International Society of Nurses in Cancer Care (ISNCC);
      • Regional nursing and palliative care organizations, such as the Hospice & Palliative Nurses Association (HPNA), African Palliative Care Association (APCA), Asia Pacific Hospice Palliative Care Network (APHN), European Association of Palliative Care (EAPC), Asociación Latinoamericana de Cuidados Paliatives (ALCP), and WHO Collaborating Centres for Nursing & Midwifery;
      • International ministries of health; national/international nurse leaders and non-nurse partners and organizations; and all schools and registered programs of nursing.
      Table 2American Academy of Nursing Expert Panel Consensus-Based Recommendations on Nursing's Roles and Responsibility to Ensure Universal Palliative Care Access
      Encourage global nursing and interprofessional associations, as well as health organizations and initiatives, to call for primary/generalist palliative nursing education that is contextually relevant to various global regions as core pre-licensure requirements for the world's 28 million nurses, community health workers, and interdisciplinary partners. This education should include the development and dissemination of culturally, linguistically, and health literacy appropriate communication training, including advance care planning. Education objectives must be clear, actionable, and evidence-based to provide palliative nursing for all persons with serious illness across the lifespan, as well as for caregivers and social support systems. Education must be informed by the needs and values of the individuals, families, and communities being served.
      Partner with WHO Collaborating Centres for Nursing & Midwifery and other regional networks to provide necessary palliative care continuing education programs, advocacy training, nurse mentoring, and access to necessary technology for practicing nurses to expand palliative care competency and program development. Continuing education in evidence-based complementary and integrative medicine use should be promoted where contextually and culturally appropriate to enhance nonpharmacological symptom management approaches in palliative nursing.
      Advocate for all governments and ministries of health to invest time, resources, nursing leadership, and funding toward the development of palliative nurse specialists to lead local, regional, and national palliative care clinical practice, nurse-led research, and policy development. With strategic investment, palliative nurse specialists can be integral to palliative care workforce capacity building in all settings and systems.
      Encourage NGOs and other academic service partnership initiatives working internationally, as well as governments and health ministries, to add palliative nurses to their administration and leadership to integrate palliative nursing as a fundamental component of global public health strategies. These efforts should contribute to improved person-centered models of both individual and population-level health and social care; enhanced health promotion, management of communicable and noncommunicable diseases, and acute and long-term health disaster responses; and the provision of high-quality palliative nursing care services at all levels of health and social care engagement.
      Urge global policy makers, health ministries, and multisector leaders to create strategic plans that leverage qualified nurses’ and advanced practice nurses’ education, training, and skillset in all practice settings. These strategies include the rapid expansion of safe access to high-quality palliative nursing services through measurable policies, especially through evidence-based independent palliative care interventions at the qualified nurse and advanced practice levels (e.g., nurse prescribing of symptom management medications).
      Call for global leaders, within and beyond nursing, to increase nursing presence on health and social care decision-making bodies, boards, task forces, and in health ministries to promote nursing input on population palliative care needs assessments and innovations to improve palliative care access. All stakeholders must increase leadership and partnership opportunities for palliative nurses in international palliative care policy work, in the development of crisis standards of care, and recognize nursing as a vital component of worldwide organizational strategic planning to effectively integrate the palliative nursing perspective to alleviate SHS and improve associated outcomes.
      Advocate with governments, policy makers, and health ministries for improved palliative care outcomes research, economic benefit analyses, and the development and adoption of reimbursement models that include payment for nursing care. These improvements include evidence-based palliative care integration throughout health and social care settings and reimbursement for palliative care nurses’ contributions adapted to local needs and context.
      Collaborate with health and social care, faith-based, and other interdisciplinary professional organizations, including nursing as a trusted healthcare profession, to engage all populations in discussions, research, and education pertaining to palliative care to support patients across the lifespan, as well as their families and communities, to effectively address SHS and raise public health knowledge of palliative care and palliative nursing.
      Partner with the WHO, UN Office on Drugs and Crime, local governments, health ministries, and palliative care and nursing organizations to address access barriers to internationally controlled essential symptom management medications, particularly in LMICs and other resource-poor settings, and enact nurse-led solutions (e.g., improved palliative nursing education, expanding nursing scopes of practice, nurse prescribing).
      Ensure nurses promote palliative care within a human rights, health equity, and social justice framework to assure dignity, respect, humility, transparency, and ethical care for all human beings experiencing the consequences of SHS. Particular attention should be paid to populations at-risk due to poverty, homelessness, incarceration, mental illness, substance use, disabilities, marginalization, and minoritized social identities.

      Conclusion

      Globally, nurses are at the forefront of health and social care services for all populations, in acute care and community-based settings, and amid disaster response and worldwide public health crises such as COVID-19. The biopsychosocial, ethical, and humanistic training of nurses positions them to responsibly deliver generalist palliative care and identify the need for specialist palliative care across all nursing specialties. The American Academy of Nursing calls for nurses to provide and promote palliative nursing education, as well as to lead and partner in policy and decision-making locally, nationally, and internationally to increase access to appropriate and acceptable palliative care services that optimize the alleviation of SHS. To the extent they are implemented, our recommendations will considerably strengthen the efforts of the global nursing workforce and health and social care systems at large while improving the quality of care for all people in all nations through enhanced palliative nursing education, clinical practice, research, and policy development.

      Author contribution

      William E. Rosa (Conceptualization, Writing- Original Draft, Writing Review & Editing, Supervision), Harleah G. Buck (Writing- Review & Editing, Supervision), Allison P. Squires (Writing- Review & Editing, Supervision), Sharon L. Kozachik (Writing- Review & Editing, Supervision), Huda Abu-Saad Huijer (Writing- Review & Editing), Marie Bakitas (Writing -Review & Editing), Juli McGowan Boit (Writing- Review & Editing), Patricia K. Bradley (Writing- Review & Editing), Pamela Z. Cacchione (Writing- Review & Editing), Garrett K. Chan (Writing- Review & Editing), Nigel Crisp (Writing -Review & Editing), Constance Dahlin (Writing -Review & Editing), Pat Daoust (Writing -Review & Editing), Patricia M. Davidson (Writing -Review & Editing), Sheila Davis (Writing- Review & Editing), Myrna A.A. Doumit (Writing- Review & Editing), Regina M. Fink (Writing -Review & Editing), Keela A. Herr (Writing- Review & Editing), Pamela S. Hinds (Writing- Review & Editing), Tonda L. Hughes (Writing- Review & Editing), Viola Karanja (Writing -Review & Editing), Deborah J. Kenny (Writing- Review & Editing), Cynthia R. King (Writing- Review & Editing), Hester C. Klopper (Writing- Review & Editing), Ann R. Knebel (Writing- Review & Editing), Ann E. Kurth (Writing- Review & Editing), Elizabeth A. Madigan (Writing- Review & Editing), Pamela Malloy (Writing- Review & Editing), Marianne Matzo (Writing- Review & Editing), Polly Mazanec (Writing- Review & Editing), Salimah H. Meghani (Writing -Review & Editing), Todd B. Monroe (Writing -Review & Editing), Patricia J. Moreland (Writing- Review & Editing), Judith A. Paice (Writing- Review & Editing), J. Craig Phillips (Writing -Review & Editing), Cynda H. Rushton (Writing- Review & Editing), Judith Shamian (Writing- Review & Editing), Mona Shattell (Writing- Review & Editing), Julia A. Snethen (Writing- Review & Editing), Connie M. Ulrich (Writing- Review & Editing), Dorothy Wholihan (Writing- Review & Editing), Lucia D. Wocial (Writing- Review & Editing), Betty R. Ferrell (Writing -Original Draft, Writing- Review & Editing)

      Acknowledgments

      This consensus paper represents the work of the Palliative Care & End-of-Life; Global Nursing & Health; Aging; Bioethics; Child, Adolescent & Family; Cultural Competence & Health Equity; LGBTQ Health; and Quality Health Care Expert Panels. The authors acknowledge the assistance provided by all contributing members of the respective Expert Panels, the American Academy of Nursing Board of Directors, the Academy's Senior Director of Policy, Christine Murphy, MA, and the Academy's Policy Assistant, Sonya Desai. Thank you to Professor Julia Downing, PhD, MMedSci, BN (Hons), RGN, Chief Executive, International Children's Palliative Care Network, and Professor, Makerere University, Uganda, for her consultation and guidance. William E. Rosa is funded by the National Cancer Institute (NCI)/NIH Cancer Center Support Grant P30 CA008748 and the NCI award number T32 CA009461.

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