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

Abstract

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.

Introduction

Evidence-based advocacy is essential to inspire the political will that is necessary to support the development and implementation of national palliative care (PC) policy and practice. National policy underwrites the delivery of the publicly funded services needed to relieve serious health-related suffering (SHS) at the population level. Palliative specialists are in a unique position to advocate for such policy due to their wealth of expertise that combines clinical experience and interprofessional collaboration. Advocacy gives clinicians opportunities to strategically address PC gaps beyond the microlevel.

Pettus and De Lima previously discussed a “vital feedback loop between [evidence-based] advocacy and clinical practice” to improve PC integration across settings.¹ The purpose of this article is to leverage this vital feedback loop and empower champions with facts about evidence-based PC advocacy to advance policy change at all levels of governance. The ten tips provided combine skills inherent to the palliative specialist role, as well as strategic partnership and coalition building, data sharing in easily understandable ways, storytelling about firsthand patient care experiences, and being knowledgeable about both national and global PC policies (Table 1).

Table 1.

Top Ten Tips for Evidence-Based Advocacy

Tip 1: The palliative specialist's voice is critical—use the skills you already have.

Tip 2: Stand together—use a consensus-based definition of “palliative care” that emphasizes integration to engage diverse stakeholders and consistently represent the field.

Tip 3: Be ready to explain the value of PC.

Tip 4: Advocate for PC as a component of the right to health.

Tip 5: Reference international law and multilateral conventions, resolutions, and political declarations that call for universal access to PC.

Tip 6: Quantify the scope of unmet needs and identify public policy gaps.

Tip 7: Actively participate in organizations that advocate for PC to maximize impact and reduce duplication.

Tip 8: Embed advocacy into different aspects of training and professional development to prepare the primary health care and palliative workforces.

Tip 9: Know the data demonstrating that publicly provided PC can address social injustice and remedy health inequities.

Tip 10: Expand your circle of influence: make new friends by advocating for PC at clinical and interprofessional forums outside your direct circle of concern.

PC, palliative care.

Tip 1: The Palliative Specialist's Voice Is Critical—Use the Skills You Already Have

Taking time for advocacy work may appear optional or even frivolous in the context of understaffed teams with urgent, unmet clinical care needs. However, unless specialists participate in advocacy, the availability of resources to support PC delivery will remain limited and inadequate. Palliative specialists are uniquely positioned for advocacy because they can combine science with personal stories as authentic lived experience. They know about patients and families confronting serious illness, inequitable access to PC services, and the economic, social, and political factors at play in the clinical setting. Presenting decision makers with compelling stories of both relieved and unrelieved suffering, data showing the magnitude of the problem, and evidence-based cost-effective interventions can initiate and sustain change.

Expert communication is the foundation of effective PC.^2–5 Palliative specialists' abilities to foster relationships with patients and families are essential skills when working with policymakers and other key stakeholders. Policymakers are humans, too, with their own goals. Many have had firsthand experience with serious illness. Elicit the policymaker's needs and values through relationship building to demonstrate how the advocacy “asks” are aligned with what they hope to accomplish in public life. In other words, use the skills you already have.

Tip 2: Stand Together—Use a Consensus-Based Definition of “Palliative Care” That Emphasizes Integration to Engage Diverse Stakeholders and Consistently Represent the Field

Expanding access to PC requires a shared understanding across different sectors about what PC is and what service delivery entails. A consensus-based definition can help provide audiences with a more consistent understanding of PC's benefits. There are a number of definitions available. The National Consensus Project definition notes that PC is beneficial at any stage and describes it as “an interdisciplinary care delivery system designed to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering to optimize quality of life for patients, their families, and caregivers.”⁶ A global definition, created through a consensus process led by the International Association for Hospice & Palliative Care (IAHPC),⁷ describes PC as “the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families, and their caregivers.”⁸ The IAHPC definition has several important components that may be second nature to palliative specialists, but must be explained clearly to less familiar stakeholders. Fluency with the components below will assist champions to succinctly address various aspects of PC based on the policy gap being addressed and the policy maker at hand. As per the IAHPC definition,⁸ PC

• includes prevention, early identification, comprehensive assessment, and management of physical issues, including pain and other distressing symptoms, psychological distress, spiritual distress, and social needs, and whenever possible, these interventions should be evidence based;

• provides support to help patients live as fully as possible until death by facilitating effective communication, helping them and their families determine goals of care;

• is applicable throughout the course of an illness, according to the patient's needs;

• is provided in conjunction with disease-modifying therapies whenever needed;

• may positively influence the course of illness through amelioration of SHS and improvement in the quality of life for patients and caregivers;

• intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process;

• provides support to the family and the caregivers during the patient's illness and during their own bereavement;

• is delivered recognizing and respecting the cultural values and beliefs of the patient and the family;

• is applicable throughout all health care settings (including place of residence and institutions) and at all levels (primary to tertiary);

• can be provided by professionals with basic PC training; and

• requires specialist PC with an interdisciplinary team for referral of complex cases.

The IAHPC consensus-based definition also identifies actions that governments can take to improve PC service integration across health and social care settings (Table 2), providing a practical platform for advocacy. Critical to this tip is the need to differentiate PC from hospice in contexts where the two are structured differently with regard to eligibility, available services, and financing.

Table 2.

Government Actions for Improved Palliative Care Integration

To achieve PC integration, governments should do the following:

1. Adopt adequate policies and norms that include PC in health laws, national health programs, and national health budgets.

2. Ensure that insurance plans integrate PC as a component of programs.

3. Ensure access to essential medicines and technologies for pain relief and PC, including pediatric formulations.

4. Ensure that PC is part of all health services (from community health-based programs to hospitals), everyone is assessed, and all staff can provide basic PC with specialist teams available for referral and consultation.

5. Ensure access to adequate PC for vulnerable groups, including children and older persons.

6. Engage with universities, academia, and teaching hospitals to include PC research as well as PC training as an integral component of ongoing education, including basic, intermediate, specialist, and continuing education.

Source: Radbruch et al.⁸

Tip 3: Be Ready to Explain the Value of PC

PC is one of the few health care services that has been shown to improve quality of life for patients with SHS while reducing avoidable spending in both high-resource and resource-constrained settings.⁹ Evidence-based advocacy will help policymakers appreciate that the benefits of PC can help to address many systemic problems, such as

• alleviating health-related suffering for people living with serious illness^10,11;

• reducing caregiver burden, thus contributing to a more productive workforce¹²;

• increasing clinician satisfaction by providing additional assistance with difficult cases¹³;

• improving symptom management, thereby reducing costly and potentially burdensome emergency department visits and hospitalizations¹⁴; and

• enhancing treatment decision making for patients and families, thus mitigating outcomes that impair patient function or increase the need for long-term services and supports.^15,16

An effective advocate must be able to explain PC in such a way that all parties can understand the benefits to patients, family caregivers, health care providers, and systems, considering both individual and public health level outcomes.

Tip 4: Advocate for PC as a Component of the Right to Health

PC access is fundamental to the right to life, to the highest possible standard of physical and mental health, and to ensuring freedom from cruel inhumane treatment.¹⁷ PC aligns with the ethical foundations of all human rights—namely, universality and dignity. Thus, PC services should be available to all those in need and not just patients fortunate enough to live in certain catchment areas.

International human rights law establishes standards and obligations that United Nations (UN) member states are bound to follow.^17–19 UN member states fulfill or violate these standards both through specific acts (of commission) and by failure to act (omission). Parties to multilateral treaties commit under international law to respect, protect, and fulfill human rights, including the right to the highest attainable standard of health. Governments that fail to take positive action to integrate PC into their health system—thereby tolerating unmet needs and unrelieved SHS—fail to protect and fulfill their populations' rights to life and health, etc. PC advocates who understand the human rights framework can (1) identify these failures and (2) provide expert advice to address these omissions by improving PC integration.

Tip 5: Reference International Law and Multilateral Conventions, Resolutions, and Political Declarations That Call for Universal Access to PC

Even when working at the national level, consider how the international normative framework of laws, resolutions, and political declarations supports your advocacy. Global PC advocacy is guided by a theory of change that views statements and commitments articulated in multilateral resolutions, high-level political declarations (adopted at UN meetings), conventions, and expert opinion stipulated in the reports of UN Treaty Bodies as authoritative. The consensus language in the texts of these agreements signals that UN member states, through their governments, recognize the salience of certain issues for the health and well-being of their populations.²⁰

PC's previously glaring absence from those texts has signaled both PC's lack of salience and the willingness of governments to outsource it to the private, faith-based, and philanthropic spheres. However, UN resolutions adopted over the past six years—as a result of concerted advocacy—now urge member states to integrate PC into public health initiatives and health policies in all settings (Table 3). PC champions should leverage these authoritative documents as they engage in advocacy.

Table 3.

Multilateral Commitments to Universal Palliative Care Access

The 2014 unanimously adopted World Health Assembly Resolution 67.19 urged UN member states to “develop, strengthen and implement … palliative care policies to support the comprehensive strengthening of health systems to integrate evidence-based, cost-effective and equitable palliative care services in the continuum of care …”29

The Human Rights Council Resolution on the Rights of Older Persons calls for the “prevention of and protection against violence and abuse, social protection, food and housing, right to work, equality and nondiscrimination, access to justice, education, training, health support, long-term and palliative care, lifelong learning, participation and accessibility” to support the aging population in enjoying their human rights.40

The Inter-American Convention on the Rights of Older Persons is the only example of international law that explicitly stipulates a right to PC based on intrinsic dignity.41 This is a regional instrument, however, and along with global conventions such as the Convention on the Rights of Persons with Disabilities,42 can serve as a template for integration of an adequate human rights standard in any global convention on the rights of older persons, as is currently being considered at the UN Open-Ended Working Group on Ageing.43 Clinician advocacy from around the world would be most welcome at this meeting and can be presented as part of the record.

The Astana Declaration on Primary Health Care 201844 updates the Alma-Ata Declaration of 1978,45 adding PC to that cornerstone document's previously authoritative spectrum of essential services, which ended with rehabilitation.

The UN General Assembly 2019 High-Level Political Declaration on UHC “recognize[d] that [UHC] implies that all people have access, without discrimination, to nationally determined sets of the needed promotive, preventive, curative, rehabilitative and palliative essential health services …”46 This emphasis on PC as a component of comprehensive UHC was also stressed during the 141st Assembly of the Inter-Parliamentary Union in October 2019.47

UHC, universal health coverage; UN, United Nations.

Tip 6: Quantify the Scope of Unmet Needs and Identify Public Policy Gaps

SHS requiring PC was not quantified until 2018.⁹ The now well-noted abyss of unmet needs revealed and exposed by media coverage during the coronavirus disease 2019 (COVID-19) pandemic has made suffering, death, and dying much more visible to audiences that too often ignore the circumstances of seriously ill persons. In this way, the pandemic has made previously hidden SHS visible, publicizing the private realms of illness and death in ways that can no longer be relegated to the cultural peripheries.

The Lancet Commission on Global Access to Palliative Care and Pain Relief quantified SHS and calculated unmet needs by using morbidity and mortality data based on health conditions and existing demographics.^9,21 Any stakeholder can calculate SHS for their country from the Lancet Commission data platform on the IAHPC website and generate data on metrics, such as opioid consumption, measured against an accepted benchmark standard.²² In this case, lack of opioid availability where it is needed is a proxy for SHS. Calculating these data at the appropriate level (local, regional, or national) provides useful arguments for discussions with decision makers.

Tip 7: Actively Participate in Organizations That Advocate for PC to Maximize Impact and Reduce Duplication

PC champions should join organizations that advocate at all levels of governance (from local to global). In the United States, organizations such as the National Coalition for Hospice and Palliative Care,²³ the Patient Quality of Life Coalition,²⁴ and the Coalition to Transform Advanced Care,²⁵ among others, recognize the importance of local and national advocacy and are invested in multistakeholder engagement and partnerships. These coalitions champion policies that emphasize access to and quality of specialty PC, as well as training of all clinicians in essential primary PC skills. In addition, coalitions and their member organizations, such as the Center to Advance Palliative Care,²⁶ provide toolkits and resources to help guide policy advocacy and to define and measure quality in ways that advance PC.²⁷

Other organizations with a global mission provide resources that are essential to PC development, particularly in resource-constrained settings and countries.^7,28 Furthermore, advocacy through coalitions and large organizations expands champions' ability to reach large and influential audiences. For instance, the IAHPC⁷ is accredited by the UN Economic and Social Council (ECOSOC), allowing the advocacy team to register delegations for UN meetings and participate through interactions with representatives of member states (for additional information on how PC nongovernmental organizations can evaluate their eligibility for ECOSOC consultative status, visit: http://csonet.org/index.php?menu=30).

Tip 8: Embed Advocacy into Different Aspects of Training and Professional Development to Prepare the Primary Health Care and Palliative Workforces

The World Health Assembly Resolution 67/19, “Strengthening of palliative care as a component of integrated treatment throughout the life course,” adopted in 2014, urges UN member states to ensure that PC training is integrated at all levels of clinical education.²⁹ The formal recognition of PC as an area of specialization has been identified as a critical factor in the field's development and strengthens PC's credibility as a scientific discipline.

Palliative specialists are responsible for generating new and robust knowledge as well as increasing uptake of practice. They are also usually charged with managing the most challenging clinical cases. Additionally, palliative specialists ensure that appropriate standards of care are applied when they consult with medical teams in other disciplines. Given these responsibilities, it is imperative that basic, intermediate, and specialist PC education includes advocacy training to strengthen the vital feedback loop between advocacy and clinical practice.¹

Tip 9: Know the Data Demonstrating That Publicly Provided PC Can Address Social Injustice and Remedy Health Inequities

It is imperative to raise the visibility of health inequities and articulate how PC can aid in closing dire SHS gaps. Experts have identified several ways that publicly funded and universally accessible PC can diminish inequities, particularly for low-income and underserved groups.⁹ Strategies include options requiring fewer resources in settings with underfunded health care budgets, such as community-led initiatives. For instance, the Essential Package, developed by the Lancet Commission on PC and Pain Relief, is a recommended list of cost-effective PC and pain relief interventions (e.g., medications and equipment) to be used across health delivery settings and in the home to reduce SHS health expenditures, protect patients and families, and promote safe, effective, PC health service delivery.⁹ The Essential Package would cost low-income countries about $2.16 USD per capita per year at lowest reported international medicine prices or just over 1% of total low- and middle-income countries' per capita health expenditure.⁹ Relevant PC data to support evidence-based advocacy efforts include^9,30–32 the following:

• Only 12% of the global PC need is currently being met.

• Sixty-four percent of countries have no or very limited provision of PC.

• Roughly three-quarters of the unmet adult PC needs are in low- and middle-income countries.

• About 7% of the world's population in need of PC every year are children.

• Over 80% of countries have nonexistent or unacceptably low access to controlled essential medicines (e.g., opioids) for pain and symptom relief.

• By 2060, the estimated global burden of SHS at the end of life will increase nearly 87%, disproportionately affecting persons living in poverty, those over the age of 70, and other at-risk groups.

The COVID-19 pandemic has further highlighted the urgent need to advocate at all levels of governance for PC policies that promote equity for marginalized populations, such as LGBTQ+ identified communities, minoritized racial and ethnic groups, persons experiencing homelessness, and those deprived of liberty and the incarcerated, among others.^33–36 As PC specialists seek to alleviate SHS in the clinical setting, a broader understanding of inequity and injustice can guide service-, institutional-, and system-level changes through everyday advocacy.

Tip 10: Expand Your Circle of Influence: Make New Friends by Advocating for PC at Clinical and Interprofessional Forums Outside Your Direct Circle of Concern

Just as PC itself is inherently interdisciplinary, effective PC advocacy is broad based and participatory. The COVID-19 pandemic has revealed that health care providers across all disciplines and settings can benefit from the inclusion of PC to provide more holistic person-centered care to patients with serious illness and their families. With these newfound relationships, PC advocates are better positioned to work with their policy-oriented counterparts in other specialties, focus areas (e.g., disability, aging, and chronic and noncommunicable diseases), and communities (e.g., caregivers and faith-based organizations). This kind of multistakeholder work, which reflects the PC ethos of stepping out of professional silos,³⁷ is creating a global movement that will ultimately motivate policymakers to take action. PC advocacy calls for an all-hands-on-deck approach that entails befriending others who can help push this rather large rock of universal PC access and integration up the hill. Sisyphus could not do it alone and neither can we!^38,39

Conclusion

The palliative specialist voice is needed at all levels of governance. Palliative specialists know the suffering of their patients from the daily encounters in their bedside provision of care. They know which groups in their country do not have equitable access to PC and why. PC specialists know about the burden of unrelieved suffering among both patients and their caregivers. They can explain that this suffering includes not only the physical burden from unrelieved symptoms or the emotional burden from watching a loved one die but also the financial burden from lost income when symptom relief is inadequate. PC specialists can give examples of how PC can save money by reallocating scarce resources more appropriately, preventing futile and potentially harmful treatment interventions, and providing support for caregivers who are losing income when they have dropped out of the workforce. The power of evidence-based advocacy by palliative specialists should be strategically and consistently added to the chorus of patients, caregivers, and other health care professionals calling for a world free from SHS.

Funding Information

Dr. Rosa is funded by the National Cancer Institute (NCI) Cancer Center Support Grant P30 CA008748 and NCI award number T32 CA009461.

Author Disclosure Statement

No competing financial interests exist.