Palliative care is a vital approach to healthcare that enhances the quality of life for patients and their families facing challenges associated with life-limiting illness. This holistic method addresses suffering by going beyond mere physical symptoms, encompassing a spectrum of needs to provide comprehensive support. It employs a team-based approach, ensuring that patients and their caregivers receive multifaceted assistance, from managing practical necessities to offering bereavement counseling. Ultimately, palliative care aims to create a support system that enables patients to live as fully and actively as possible until the end of life.
Recognized as a human right, palliative care is an essential component of person-centered and integrated health services. This recognition emphasizes the importance of tailoring care to the unique needs and preferences of each individual, ensuring dignity and respect throughout their healthcare journey.
The necessity for palliative care spans a wide array of diseases, primarily chronic conditions. Cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%), and diabetes (4.6%) are among the leading illnesses requiring this specialized care for adults. Furthermore, conditions such as kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological diseases, dementia, congenital anomalies, and drug-resistant tuberculosis also frequently necessitate palliative interventions to manage symptoms and improve patient well-being.
Pain and breathlessness are frequently reported and severe symptoms for individuals needing palliative care. Alarmingly, studies indicate that around 80% of patients with AIDS or cancer, and approximately 67% of those with cardiovascular disease or chronic obstructive pulmonary disease, will endure moderate to severe pain as they approach the end of their lives. Opioids are critical medications in effectively managing pain and alleviating breathlessness, highlighting their essential role in palliative care. Early and effective symptom control is not only an ethical imperative to relieve suffering but also to uphold a person’s dignity during serious illness.
The Global Disparity in Accessing Palliative Care
Globally, an estimated 56.8 million individuals are in need of palliative care annually. A significant majority of these individuals reside in low- and middle-income countries, underscoring a stark disparity in access. For children requiring palliative care, the situation is even more pronounced, with 98% living in low- and middle-income countries, and nearly half of these children residing in Africa. This geographical imbalance highlights the urgent need to address global inequities in healthcare access.
Several significant barriers impede the widespread availability of palliative care worldwide:
- Lack of Integration in National Health Policies: Palliative care is frequently absent from national health policies and system frameworks, leading to underfunding and lack of prioritization.
- Limited Training for Healthcare Professionals: Education and training in palliative care for doctors, nurses, and other healthcare providers is often inadequate or non-existent, hindering the capacity to deliver effective care.
- Inadequate Access to Opioid Pain Relief: Restrictive regulations and logistical hurdles limit access to opioid medications essential for pain management, particularly in low- and middle-income countries, failing to meet international standards for essential medicine availability.
A young girl receiving palliative care, highlighting the need for global access to such care, especially in low- and middle-income countries where the majority of children in need reside.
A 2019 WHO survey encompassing 194 Member States on noncommunicable diseases revealed critical gaps. While 68% of countries reported some level of funding for palliative care, only a mere 40% indicated that services reached at least half of the patients in need. This substantial gap between funding availability and service reach emphasizes the challenges in translating policy into effective implementation.
Data from the International Narcotics Control Board in 2018 further illustrates the disparity. It was found that 79% of the world’s population, predominantly those in low- and middle-income countries, consumed only 13% of the total morphine used for pain and suffering management. This equates to a mere 1% of the 388 tons of morphine manufactured globally. While there was a slight improvement from 2014, where this population consumed only 9.5%, the significant imbalance in access to narcotic drugs for palliative care between wealthier and poorer nations remains a critical ethical and health equity concern.
Further obstacles hindering palliative care access include:
- Low Public and Professional Awareness: Lack of understanding among policymakers, healthcare professionals, and the general public about the definition of palliative care, its benefits, and who can benefit from it.
- Cultural and Social Beliefs: Cultural norms and societal views surrounding death and dying can create barriers to accepting and utilizing palliative care services.
- Misconceptions about Palliative Care: False beliefs, such as palliative care being exclusively for cancer patients or only appropriate in the final days of life, limit its broader application and acceptance.
- Concerns about Opioid Abuse: Unfounded fears that improving access to opioid analgesics will lead to increased drug abuse impede efforts to make these essential medicines readily available for legitimate medical purposes.
National Strategies to Enhance Palliative Care
National health systems bear the responsibility of integrating palliative care into the continuum of care for individuals living with chronic and life-threatening conditions. This integration should link palliative services with preventative measures, early detection initiatives, and treatment programs to ensure a holistic approach to patient care. At a minimum, effective national strategies should incorporate the following key components:
- Integrated Health System Policies: Policies that systematically incorporate palliative care services into the organizational structure and financial frameworks of national healthcare systems at all levels, from primary care to specialized hospital settings.
- Human Resource Development: Policies focused on strengthening and expanding the palliative care workforce. This includes specialized training for current healthcare professionals, embedding palliative care education into the core curricula for all new health professionals, and educating community volunteers and the general public to broaden support networks.
- Essential Medicines Policy: A robust medicines policy that guarantees the consistent availability of essential medications for symptom management, with a particular focus on opioid analgesics for effective pain relief and management of respiratory distress.
Palliative care demonstrates the greatest effectiveness when introduced early in the course of a serious illness. Timely integration not only significantly improves the patient’s quality of life but also demonstrably reduces unnecessary hospital admissions and the overall utilization of healthcare services, leading to more efficient and patient-centered care.
Adherence to the principles of universal health coverage is crucial for palliative care. Equitable access dictates that all individuals, irrespective of their income level, disease type, or age, should have access to a nationally defined set of fundamental health services, which must include palliative care. Financial and social protection systems need to explicitly acknowledge and uphold the human right to palliative care, especially for vulnerable and marginalized population groups who often face the greatest barriers to accessing care.
Nurses, as integral members of multidisciplinary healthcare teams, require specialized training in palliative care skills. This is particularly important for nurses working with patients facing serious illnesses, as they are frequently at the forefront of providing direct patient care and support.
Specialist palliative care represents one crucial facet of service delivery. However, a truly sustainable, high-quality, and broadly accessible palliative care system necessitates integration across various healthcare settings. This includes primary healthcare facilities, community-based services, home-based care programs, and robust support systems for informal caregivers such as family members and community volunteers. Providing palliative care should be recognized as a fundamental ethical duty for all healthcare professionals, reflecting a commitment to alleviating suffering and promoting patient well-being.
WHO’s Global Leadership in Palliative Care
The World Health Organization (WHO) plays a pivotal role in advancing palliative care globally. Palliative care medicines, including essential pain relief medications, are included in both the WHO Essential Medicines List and the WHO Essential Medicines List for Children, signifying their importance in global healthcare. Palliative care is also prominently featured in key global mandates and strategies concerning universal health coverage, noncommunicable diseases, and the development of people-centered and integrated health services, highlighting its centrality to WHO’s global health agenda. Furthermore, the WHO Guidelines for the pharmacological and radiotherapeutic management of cancer pain in adults and adolescents, released in 2019, provide critical guidance for pain management in palliative settings.
In 2014, the landmark World Health Assembly resolution WHA67.19, the first global resolution specifically 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 crucial roles of primary healthcare and community/home-based care in expanding access. WHO’s ongoing efforts to strengthen palliative care are concentrated in several key areas:
- Integrating Palliative Care into Global Health Plans: Ensuring palliative care is systematically incorporated into all relevant global disease control strategies and health system development plans.
- Assessing Palliative Care Service Development: Monitoring and evaluating the progress of palliative care service development across countries to identify gaps and areas for improvement.
- Developing Guidelines and Tools: Creating evidence-based guidelines and practical tools for integrated palliative care across diverse disease categories and levels of healthcare, while also addressing ethical considerations related to comprehensive palliative care provision.
- Improving Access to Palliative Care Medicines: Supporting Member States in enhancing access to essential palliative care medications through improved national regulations and streamlined delivery systems, particularly focusing on overcoming barriers to opioid availability for pain management.
- Focus on Palliative Care for HIV: Special attention to palliative care needs of people living with HIV, including the development of specific guidelines to address their unique requirements.
- Promoting Pediatric Palliative Care: Collaborating with UNICEF to advocate for and expand access to palliative care for children globally, recognizing their distinct needs.
- Monitoring Global Access and Progress: Tracking global palliative care access trends and evaluating the effectiveness of palliative care programs to ensure continuous improvement.
- Developing Evaluation Indicators: Creating standardized indicators to assess the quality and impact of palliative care services, enabling data-driven program enhancements.
- Encouraging Resource Allocation: Advocating for adequate resource allocation for palliative care programs and research, particularly in resource-constrained countries, to foster sustainable development.
- Building Evidence-Based Models: Generating evidence on effective palliative care models suitable for implementation in low- and middle-income settings, ensuring culturally appropriate and contextually relevant approaches.
(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
