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What Are National Strategies and Frameworks for Palliative Care?
Introduction and Scope of the Problem
In 2014, the World Health Organization (WHO) called on members to develop and implement policies to ensure evidence-based, effective, and equitable palliative care is integrated into national health services as an element of the continuum of care. Yet palliative care remains inaccessible to most. Per a 2019 WHO global survey, palliative care is reported as being available to about 50% of patients in need through home-based or institution-based care in approximately 40% of countries ( Fig. 74.1 ). In middle- to low-income countries, availability ranges from 10% (community- or home-based care settings) to 19% (institution-based care). In most countries, palliative care services are not integrated within national health systems; health care professionals have not been provided with knowledge or skills in the core palliative care domains of pain and symptom assessment and management, communication, and care coordination; access to opioids in many parts of the world is limited; and most persons with serious illness and their families are frequently unfamiliar with the benefits of palliative care and how and when to access it. Globally, development of palliative care has been largely influenced by local resources and practices, inconsistent government and philanthropic funding, and recommendations and guidelines from specialty societies. This chapter reviews barriers that need to be overcome to achieve universal access to high-quality palliative care, summarizes the state of palliative care development globally, describes published national strategies and frameworks to promote palliative care, and examines key aspects that have been linked to successful outcomes.
What Are the Barriers to Accessing High-Quality Palliative Care?
Each year an estimated 57 million people are in need of palliative care, 76% of whom live in low- and middle-income countries. Ninety-eight percent of children needing palliative care live in low- and middle-income countries, with almost half of them living in Africa. Worldwide, only about 14% of people who need palliative care currently receive it. With the aging of the global population and the rising burden of noncommunicable diseases and some communicable diseases, the need for palliative care will continue to increase. Barriers to accessing high-quality palliative care can be categorized into six areas:
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Workforce
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Education
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Infrastructure and implementation
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Medication availability
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Knowledge base
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Misperceptions, attitudes, and beliefs
Workforce
Workforce shortages prevent many seriously ill patients and their families from accessing or using palliative care services. The number of palliative care specialists falls far short of what is necessary to serve the current population. The World Hospice and Palliative Care Association (WHPCA) has estimated that approximately 2 million health care workers would be needed to care for a daily census of over 5.6 million patients just for the last 80 days of life. At present, there are only 400,000 health care workers engaged in delivering palliative care globally, leaving a gap of 1.6 million. In the United States alone, it is estimated that the gap between the current supply and the hypothetical demand to reach mature physician staffing levels approaches 11,000 individual physicians working full time in palliative medicine. At present, the number of U.S. physicians graduating from fellowship training programs cannot keep up with physician retirements. Similar shortages exist across core palliative care disciplines, such as nursing, social work, and chaplaincy.
Education
The global supply of palliative care specialists falls far short of what is necessary to serve the current population of patients with serious illness and their families. Meeting the needs of the seriously ill will require that most patients and families receive palliative care from their primary treating physicians (e.g., oncologists, cardiologists, primary care providers), with specialist-level palliative care reserved for the most complex patients and families. With few exceptions (e.g., Australia), formal systems of accessible primary- and specialist-level palliative care do not exist. Furthermore, the core palliative care competencies of expert pain and symptom management, skilled communication, and psychosocial assessment remain, at best, a small part of health care professionals’ training programs throughout the world. As a result, the vast majority of clinicians and trainees have either rudimentary or no skills in these areas, which negatively affects patient and family outcomes. Expanding training in the core palliative care domains for all clinicians will be a key step toward resolving the shortage in the palliative care specialist workforce. Whereas palliative care curricula exist to address these knowledge and skill gaps, there is no consensus on the amount of training needed and most of the existing educational programs are only in English.
Public education and awareness is also needed. International research suggests that palliative care is poorly understood among the general public, with varying levels of awareness and understanding of palliative care globally. Among high-income nations (the location of the majority of surveys), knowledge of palliative care appears greatest in the UK, Australia, and New Zealand, where public surveys demonstrate that most can define palliative care, and poorest in the United States, where recent surveys revealed that upward of 70% of respondents are unable to define the specialty. In addition to general education about palliative care, caregivers of persons with serious illness also need extensive training and education on the specifics of caregiving, including personal care, symptom management, and management of an actively dying patient, yet few formal resources for this training and education are currently available.
Infrastructure and Implementation
The existing palliative care infrastructure needs to be enhanced and new models of care delivery are needed, particularly for patients living at home, in nursing homes, and in rural areas where access to specialist-level palliative care is extremely limited. The development of palliative care internationally, with rare exceptions, has been at the local level, driven by champions, and dependent on community funding and resources, private sector philanthropy, and volunteers. Existing palliative care programs are often stretched to capacity due to staffing constraints, and thus they often triage services to the most complex patients or those closest to the end of life. This triage limits access to palliative care for many patients and families who could otherwise benefit from it. Without policy support for palliative care and accompanying funding mechanisms, growth is restricted to whatever is achieved by local leaders and their community resources. Reaching the large numbers of people requiring palliative care services will require formal government policies that integrate palliative care into existing health care systems, including primary, acute home-based, and long-term care.
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