Palliative care is a crucial aspect of healthcare that extends beyond addressing mere physical symptoms. It embodies a holistic, team-based approach aimed at enhancing the quality of life for patients and their families facing life-limiting illnesses. This comprehensive care model encompasses practical support, emotional and psychological well-being, and even bereavement counseling, ensuring patients can live as actively and comfortably as possible until the end of life.
Recognized as a fundamental human right to health, palliative care should be seamlessly integrated into person-centered healthcare services. These services must be tailored to respect individual needs and preferences, acknowledging the unique journey of each patient.
The spectrum of conditions necessitating palliative care is broad, with chronic diseases leading the demand. Cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%), and diabetes (4.6%) constitute the majority of cases in adults. However, palliative care is also vital for individuals suffering from kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disorders, dementia, congenital anomalies, and drug-resistant tuberculosis, among other conditions.
Pain and breathlessness stand out as the most prevalent and distressing symptoms for patients requiring palliative care. Alarmingly, a significant proportion of individuals with AIDS or cancer (80%), and those with cardiovascular disease or chronic obstructive pulmonary disease (67%) endure moderate to severe pain in their final stages of life. Opioid medications are indispensable in effectively managing pain and providing relief.
Beyond pain, opioids play a crucial role in alleviating other debilitating physical symptoms like breathlessness. Early and effective symptom control is not only an ethical imperative to minimize suffering but also a matter of respecting an individual’s dignity in the face of serious illness.
The Urgent Need to Bridge the Palliative Care Access Gap
Globally, an estimated 56.8 million individuals require palliative care annually, with a disproportionate number residing in low- and middle-income countries. For children, the situation is even more stark, with 98% of those in need living in resource-limited settings, nearly half of whom are in Africa.
Despite the evident need, significant obstacles hinder the widespread availability of palliative care:
- Lack of Integration in National Health Policies: Palliative care often remains absent from national health policies and system frameworks, relegating it to the periphery of healthcare priorities.
- Insufficient Training for Healthcare Professionals: Education and training in palliative care for doctors, nurses, and other health professionals are frequently inadequate or entirely lacking, limiting the workforce’s capacity to deliver this essential care.
- Inadequate Access to Opioid Pain Relief: Restrictive regulations and logistical barriers impede access to opioid medications, crucial for pain management, violating international agreements on access to essential medicines.
A 2019 WHO survey across 194 Member States revealed that while 68% of countries reported some funding for palliative care, only a meager 40% indicated that services reached at least half of the patients in need (1).
The International Narcotics Control Board’s 2018 findings further underscore this disparity: 79% of the world’s population, predominantly in low- and middle-income countries, consumed a mere 13% of the global morphine used for pain and suffering management – a mere 1% of the 388 tons manufactured worldwide. While a slight improvement from 2014, the gap in access to narcotic drugs for palliative care between high-income and resource-limited countries remains a critical concern (2).
Other significant barriers to palliative care include:
- Limited Awareness: Policymakers, healthcare professionals, and the general public often lack sufficient understanding of palliative care, its scope, and the profound benefits it offers to patients and healthcare systems alike.
- Cultural and Social Beliefs: Deep-rooted cultural and social norms surrounding death and dying can create resistance or misconceptions about palliative care.
- Misconceptions and Stigmas: Palliative care is often mistakenly perceived as being solely for cancer patients or only relevant in the very final weeks of life, hindering its timely integration into care plans.
- Fear of Opioid Misuse: Unfounded fears persist that improved access to opioid analgesics will inevitably lead to increased substance abuse, despite evidence supporting safe and responsible use in palliative care.
Empowering Countries to Enhance Palliative Care Services
National health systems bear the responsibility of integrating palliative care seamlessly into the continuum of care for individuals facing chronic and life-threatening conditions. This integration should commence early in the illness trajectory and be linked to prevention, early detection, and treatment programs. A robust palliative care framework necessitates, at a minimum, the following key components:
- Integrated Health System Policies: National health policies must explicitly incorporate palliative care services into the structure and financial frameworks of healthcare systems at all levels – from primary care to specialized hospital settings.
- Human Resource Development: Investing in strengthening and expanding the palliative care workforce is paramount. This includes comprehensive training for existing healthcare professionals, embedding palliative care education into the core curricula of all new health professionals (doctors, nurses, pharmacists, social workers), and educating community volunteers and the public to enhance support networks.
- Essential Medicines Policies: National medicines policies must guarantee the availability of essential medications for effective symptom management. Critically, this includes ensuring uninterrupted access to opioid analgesics for the relief of moderate to severe pain and respiratory distress, adhering to WHO guidelines and best practices for safe prescribing and dispensing.
Early integration of palliative care, ideally from the point of diagnosis of a serious illness, yields the most significant benefits. It demonstrably improves patients’ quality of life, reduces unnecessary hospitalizations, and optimizes the utilization of healthcare resources, leading to more efficient and patient-centered care.
Palliative care delivery must be grounded in the principles of universal health coverage, ensuring equitable access for all individuals regardless of income, disease type, or age. Every person should have access to a nationally determined set of basic health services that includes palliative care. Financial and social protection systems must recognize and uphold the human right to palliative care, especially for vulnerable and marginalized populations who often face the greatest barriers to accessing essential services.
Nurses, as integral members of multidisciplinary palliative care teams, require specialized training in palliative care skills. This is particularly crucial for nurses working directly with patients facing serious illnesses, whether in hospitals, community settings, or home-based care. Nursing diagnosis in palliative care plays a pivotal role. Nurses are at the forefront of patient assessment, identifying physical, psychological, social, and spiritual needs. Through careful assessment and nursing diagnosis, nurses contribute significantly to developing individualized care plans, proactively managing pain and other distressing symptoms, and advocating for patient preferences and goals.
Specialist palliative care services represent one component of a comprehensive palliative care system. However, for sustainable, high-quality, and accessible palliative care, integration into primary healthcare, community-based services, and home-based care models is essential. Furthermore, providing palliative care should be recognized as a fundamental ethical duty for all healthcare professionals, reflecting a commitment to patient well-being and dignity.
WHO’s Global Response to Advance Palliative Care
Palliative care medicines, including essential pain relief medications, are included in the WHO Essential Medicines List and the WHO Essential Medicines List for Children, signifying their global importance and recommended availability. Palliative care is also explicitly recognized within key global mandates and strategies related to universal health coverage, noncommunicable diseases, and people-centered integrated health services, highlighting its central role in achieving global health goals. The WHO Guidelines for the pharmacological and radiotherapeutic management of cancer pain in adults and adolescents, released in 2019 (3), further demonstrate WHO’s commitment to evidence-based guidance in this field.
In 2014, the landmark World Health Assembly resolution WHA67.19, the first global resolution on palliative care, urged WHO and Member States to prioritize improving access to palliative care as a core component of health systems. The resolution emphasized the critical role of primary healthcare and community/home-based care in expanding reach and ensuring equitable access. WHO’s ongoing efforts to strengthen palliative care are strategically focused on the following key areas:
- Integration into Global Health Agendas: Actively integrating palliative care into all relevant global disease control and health system plans and frameworks to ensure its mainstreaming across healthcare priorities.
- Service Development Assessment: Systematically assessing the development and availability of palliative care services worldwide to identify gaps and areas for targeted improvement.
- Guideline and Tool Development: Developing evidence-based guidelines and practical tools for integrating palliative care across diverse disease groups and levels of care, while also addressing the complex ethical considerations inherent in providing comprehensive palliative care.
- Medicines Access Improvement: Supporting Member States in enhancing access to essential palliative care medicines, particularly opioid analgesics, through improved national regulations, streamlined delivery systems, and addressing barriers to availability.
- HIV and Palliative Care Focus: Maintaining a special focus on palliative care for people living with HIV, including the development of specific guidelines to address their unique needs and challenges.
- Children’s Palliative Care (with UNICEF): Collaborating with UNICEF to promote increased access to palliative care for children, recognizing their distinct needs and vulnerabilities in the context of serious illness.
- Global Monitoring and Evaluation: Monitoring global palliative care access and rigorously evaluating progress made in palliative care programs to track advancements and identify areas requiring further attention.
- Indicator Development: Developing robust indicators for evaluating the quality, effectiveness, and reach of palliative care services to ensure accountability and continuous improvement.
- Resource Mobilization: Encouraging the allocation of adequate resources for palliative care programs and research, with a particular emphasis on resource-limited countries where the need is greatest and resources are often scarce.
- Evidence-Based Models: Building a strong evidence base for palliative care models that are demonstrably effective and sustainable in low- and middle-income settings, promoting context-appropriate and culturally sensitive approaches.
By addressing these multifaceted challenges and implementing comprehensive strategies, countries can move towards ensuring that palliative care, including effective pain management and robust nursing care guided by nursing diagnosis, becomes a reality for all who need it, upholding their right to health and dignity in the face of serious illness.
(1) Assessing national capacity for the prevention and control of noncommunicable diseases: report of the 2019 global survey. Geneva: World Health Organization; 2020. Licence: CC BY-NC-SA 3.0 IGO.
(2) The Report of the International Narcotics Control Board for 2019 (E/INCB/2019/1) https://www.incb.org/documents/Narcotic-Drugs/Technical-Publications/2019/Narcotic_Drugs_Technical_Publication_2019_web.pdf
(3) WHO Guidelines for the pharmacological and radiotherapeutic management of cancer pain in adults and adolescents. https://www.who.int/publications/i/item/who-guidelines-for-the-pharmacological-and-radiotherapeutic-management-of-cancer-pain-in-adults-and-adolescents
