Palliative care is an essential aspect of healthcare that addresses suffering beyond just physical symptoms. It adopts a comprehensive, team-based approach to support patients and their families facing serious illnesses. This support extends to practical needs and bereavement counseling, aiming to help patients live as actively and comfortably as possible until the end of life. Recognizing palliative care as a fundamental human right to health is crucial. It should be integrated into person-centered health services, respecting individual needs and preferences, ensuring dignity throughout the patient journey, from diagnosis onwards.
Understanding Palliative Care: Beyond Physical Symptoms
Palliative care distinguishes itself by focusing on the holistic well-being of individuals. It acknowledges that suffering encompasses more than just physical pain. A multidisciplinary team typically delivers palliative care, including doctors, nurses, social workers, and other specialists. This team collaborates to address the diverse needs of patients and their caregivers. This includes managing pain and other distressing symptoms, but also providing emotional, social, and spiritual support. Practical assistance, such as navigating healthcare systems and accessing resources, is also a key component. Furthermore, palliative care extends support to families, including bereavement counseling to help them cope with loss. The overarching goal is to enhance the quality of life for both the patient and their family, ensuring the patient can live as fully as possible, even when facing a life-limiting illness.
Palliative Care: A Human Right and Global Imperative
The World Health Organization explicitly recognizes palliative care as an integral part of the human right to health. This recognition underscores its importance as a fundamental healthcare service that should be accessible to everyone in need. Palliative care is not limited to any single disease; it’s relevant for a wide spectrum of conditions. While it’s often associated with cancer care, the reality is that the majority of adults requiring palliative care suffer from other chronic illnesses. Cardiovascular diseases represent a significant portion (38.5%), followed by cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%), and diabetes (4.6%). Beyond these, conditions like kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological diseases, dementia, congenital anomalies, and drug-resistant tuberculosis can also necessitate palliative care interventions to improve quality of life.
Children receiving palliative care
Addressing Pain and Suffering: Core of Palliative Care
Pain and breathlessness stand out as the most prevalent and distressing symptoms for patients requiring palliative care. Statistics reveal that a significant majority of patients with serious illnesses will experience moderate to severe pain. For instance, around 80% of individuals with AIDS or cancer, and approximately 67% of those with cardiovascular disease or chronic obstructive pulmonary disease, will suffer from considerable pain towards the end of their lives. Opioid medications are recognized as essential for effective pain management in these situations. However, their role extends beyond pain relief. Opioids can also effectively alleviate other debilitating physical symptoms, such as shortness of breath. Providing timely and effective symptom control is not just a matter of medical best practice; it is an ethical imperative. It is our duty to alleviate suffering and uphold a person’s dignity throughout their illness, ensuring comfort and respect from diagnosis through to end-of-life care.
The Global Gap in Palliative Care Access
Despite the clear need and recognition of palliative care as a human right, a significant global gap exists in access to these services. Estimates indicate that annually, 56.8 million people worldwide are in need of palliative care. A disproportionate number of these individuals reside in low- and middle-income countries, where healthcare resources are often limited. For children, the disparity is even more pronounced, with 98% of children needing palliative care living in these resource-constrained nations, with almost half residing in Africa.
Several significant barriers contribute to this unmet need for palliative care globally:
- Lack of Integration into National Health Policies: Many national health policies and systems fail to adequately incorporate palliative care as a core component of healthcare services.
- Limited Professional Training: Education and training in palliative care for healthcare professionals are often insufficient or entirely absent from curricula.
- Inadequate Access to Opioid Pain Relief: Populations in many regions lack sufficient access to opioid medications for pain management, contradicting international guidelines on essential medicines.
- Low Awareness and Misconceptions: A lack of understanding persists among policymakers, healthcare providers, and the public regarding the nature and benefits of palliative care for patients and healthcare systems.
- Cultural and Social Barriers: Cultural and social beliefs surrounding death and dying can create obstacles to accepting and utilizing palliative care services.
- Misconceptions about Palliative Care Scope: Misconceptions, such as the belief that palliative care is solely for cancer patients or only relevant in the final weeks of life, limit its appropriate utilization.
- Concerns about Opioid Abuse: Unfounded fears that improved access to opioid analgesics will lead to increased substance abuse further hinder the availability of essential pain relief medications.
A 2019 WHO survey across 194 Member States regarding noncommunicable diseases revealed that while 68% of countries reported funding for palliative care, only 40% indicated that services reached at least half of the patients in need. Data from the International Narcotics Control Board in 2018 highlights a stark disparity: 79% of the world’s population, primarily in low- and middle-income countries, consumed only 13% of the morphine used globally for pain and suffering management. While this represents a slight improvement from 2014, the imbalance in access to narcotic drugs for palliative care between wealthier and poorer nations remains a serious concern.
Strengthening Palliative Care Systems: A National Responsibility
National health systems bear the responsibility for integrating palliative care seamlessly into the continuum of care for individuals facing chronic and life-threatening conditions. This integration should link palliative care with prevention, early diagnosis, and treatment programs, ensuring a holistic approach from the point of diagnosis. At a minimum, this integration necessitates several key components:
- Integrated Health System Policies: Implementing policies that embed palliative care services within the structure and financing of national healthcare systems at all levels of care, from primary to specialized settings.
- Human Resource Development: Developing and expanding human resources through comprehensive training programs for existing healthcare professionals. Integrating palliative care education into the core curricula for all new health professionals, and educating volunteers and the public to enhance community support.
- Essential Medicines Policy: Establishing a medicines policy that guarantees the consistent availability of essential medications for symptom management, with a particular focus on opioid analgesics for pain and respiratory distress relief.
Palliative care demonstrates the greatest effectiveness when introduced early in the course of an illness, ideally at the point of diagnosis of a serious condition. Early integration of palliative care not only demonstrably improves the quality of life for patients but also contributes to reducing unnecessary hospitalizations and the overall utilization of intensive healthcare services. Palliative care delivery must adhere to the principles of universal health coverage. Every individual, irrespective of their income, disease type, or age, deserves access to a nationally determined set of basic health services, which unequivocally includes palliative care. Financial and social protection systems must acknowledge and uphold the human right to palliative care, especially for vulnerable and marginalized populations. Nurses, as integral members of multidisciplinary teams, require specialized training in palliative care skills, particularly those working directly with patients facing serious illnesses. While specialist palliative care constitutes a vital component of service delivery, a sustainable, high-quality, and accessible palliative care system necessitates integration into primary healthcare, community-based care, and home-based care settings, alongside robust support for informal caregivers such as family members and community volunteers. Providing palliative care should be regarded as a fundamental ethical obligation for all healthcare professionals.
WHO’s Commitment to Palliative Care
The World Health Organization (WHO) actively champions the global expansion and integration of palliative care. Palliative care medicines, including crucial pain relief medications, are included in both the WHO Essential Medicines List and the WHO Essential Medicines List for Children, signifying their importance in basic healthcare provision. Palliative care is explicitly recognized in key global mandates and strategies concerning universal health coverage, noncommunicable diseases, and people-centered integrated health services. In 2019, WHO released comprehensive guidelines for the pharmacological and radiotherapeutic management of cancer pain in adults and adolescents, providing evidence-based recommendations for effective pain control.
In 2014, the landmark World Health Assembly resolution WHA67.19, the first global resolution dedicated to palliative care, urged WHO and Member States to prioritize improving access to palliative care as a core element of health systems. The resolution emphasized the critical role of primary healthcare and community/home-based care in expanding access. WHO’s ongoing work to strengthen palliative care focuses on several key areas:
- Integration into Global Health Plans: Integrating palliative care considerations into all relevant global disease control and health system planning initiatives.
- Service Development Assessment: Regularly assessing the development and progress of palliative care services worldwide to identify gaps and areas for improvement.
- Guideline and Tool Development: Developing evidence-based guidelines and practical tools for integrated palliative care across diverse disease groups and levels of care, while also addressing ethical considerations in comprehensive palliative care provision.
- Medicines Access Support: Supporting Member States in enhancing access to essential palliative care medicines through improved national regulations and efficient delivery systems.
- HIV Palliative Care Focus: Maintaining a special focus on palliative care for individuals living with HIV, including the development of tailored guidelines to meet their specific needs.
- Pediatric Palliative Care Promotion: Actively promoting increased access to palliative care for children, collaborating with UNICEF and other partners to expand services for young patients.
- Global Access Monitoring and Evaluation: Systematically monitoring global palliative care access and rigorously evaluating the progress of palliative care programs to ensure effective implementation.
- Indicator Development: Developing specific indicators to effectively evaluate the quality and impact of palliative care services.
- Resource Mobilization: Encouraging the allocation of adequate resources for palliative care programs and research, particularly in resource-limited countries where the need is greatest.
- Evidence-Based Model Development: Building a robust evidence base for palliative care models that are demonstrably effective and adaptable to the unique challenges of low- and middle-income settings.
