Palliative care is an essential aspect of healthcare that addresses suffering beyond just physical symptoms. It adopts a holistic, team-based approach to support patients and their caregivers, focusing on enhancing quality of life for individuals facing serious illnesses. This encompasses managing practical needs, offering emotional and psychological support, and providing bereavement counseling. Ultimately, palliative care aims to help patients live as actively and comfortably as possible from the point of diagnosis onwards, not just at the end of life.
Recognized as a human right to health, palliative care should be integrated into person-centered healthcare services, tailored to the unique needs and preferences of each individual. It is not limited to end-of-life situations but is relevant from the moment of diagnosis of a life-limiting illness. Understanding which diagnoses necessitate palliative care is crucial for ensuring timely and effective support for patients and their families.
Wide Range of Diagnoses Necessitating Palliative Care
Palliative care is not diagnosis-specific and is beneficial across a broad spectrum of illnesses. While often associated with cancer, the reality is that a significant majority of adults requiring palliative care suffer from other chronic conditions. Cardiovascular diseases constitute a large portion (38.5%), followed by cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%), and diabetes (4.6%).
However, the scope of diagnoses requiring palliative care extends much further. Conditions such as kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological diseases, dementia, congenital anomalies, and drug-resistant tuberculosis can all lead to significant suffering and reduced quality of life, making palliative care a vital component of patient management.
Children receiving palliative care
Alt text: A compassionate nurse provides attentive palliative care to a child, highlighting the importance of holistic support for young patients facing serious illnesses.
A key aspect of many diagnoses requiring palliative care is the presence of distressing symptoms. Pain and breathlessness are particularly prevalent and severe. For instance, it’s estimated that 80% of patients with AIDS or cancer, and 67% of those with cardiovascular disease or chronic obstructive pulmonary disease, will experience moderate to severe pain as their conditions progress. Effective symptom management, often involving opioids for pain relief, is a core ethical responsibility of healthcare providers to alleviate suffering and uphold patient dignity from the point of diagnosis throughout the illness trajectory.
Addressing Insufficient Access to Palliative Care Following Diagnosis
Despite the clear need across numerous diagnoses, access to palliative care remains woefully inadequate globally. An estimated 56.8 million people annually require palliative care, with a disproportionate number residing in low- and middle-income countries. For children, the disparity is even starker, with 98% of those in need living in these resource-limited settings, particularly in Africa.
Several systemic barriers contribute to this unmet need, hindering patients from receiving necessary palliative care after diagnosis:
- Lack of Integration in National Health Policies: Palliative care is often absent from national health policies and systems, leading to a lack of prioritization and funding.
- Limited Training for Healthcare Professionals: Education and training on palliative care are frequently insufficient or non-existent for healthcare providers, limiting their ability to deliver this essential care.
- Inadequate Access to Opioid Pain Relief: Restrictive regulations and logistical challenges impede access to opioid medications, crucial for managing pain and other distressing symptoms in many diagnoses requiring palliative care.
WHO surveys reveal that while funding for palliative care exists in 68% of countries, services reach at least half of those in need in only 40% of nations. Furthermore, global opioid consumption for pain management highlights a stark inequality. In 2018, the majority of the world’s population, primarily in lower-income countries, consumed a mere fraction of the morphine available, underscoring the significant access gap.
Other obstacles further complicate the delivery of palliative care after diagnosis:
- Low Awareness: Policymakers, healthcare professionals, and the general public often lack understanding of what palliative care entails and its benefits for both patients and healthcare systems.
- Cultural and Social Barriers: Cultural beliefs surrounding death and dying can create resistance to palliative care approaches.
- Misconceptions: Pervasive myths, such as palliative care being solely for cancer patients or only relevant in the final weeks of life, limit its appropriate and timely application from diagnosis onwards.
- Concerns about Opioid Abuse: Misguided fears that improved opioid access will automatically lead to increased substance abuse further restrict availability for legitimate medical purposes in palliative care.
What Countries Can Do to Improve Palliative Care Access Post-Diagnosis
National health systems bear the responsibility of integrating palliative care into the continuum of care for individuals diagnosed with chronic and life-threatening conditions. This integration should commence from the point of diagnosis and be linked with prevention, early detection, and treatment programs. Key components of effective integration include:
- Health System Policies: Implementing policies that embed palliative care services within the structure and financing of national healthcare systems at all levels, ensuring its availability from primary care to specialized settings.
- Human Resource Development: Investing in strengthening and expanding the palliative care workforce through training programs for existing healthcare professionals, integrating palliative care education into core curricula for new professionals, and educating volunteers and the public.
- Medicines Policy: Establishing medicines policies that guarantee the availability of essential medications for symptom management, particularly opioid analgesics for pain and respiratory distress, from the time of diagnosis.
Palliative care yields the greatest benefits when initiated early in the course of illness, ideally at the point of diagnosis. Early integration of palliative care not only significantly enhances patients’ quality of life but also demonstrably reduces unnecessary hospitalizations and the overall utilization of healthcare services.
Palliative care provision must adhere to the principles of universal health coverage. Every individual, regardless of income, diagnosis, or age, deserves access to a nationally determined set of basic health services, including palliative care, from the moment a diagnosis requiring such care is made. Financial and social protection systems must acknowledge the human right to palliative care, particularly for vulnerable and marginalized populations.
Nurses, as integral members of multidisciplinary teams, require specialized training in palliative care skills, especially those working with patients facing serious illnesses.
While specialist palliative care plays a crucial role, a sustainable, high-quality, and accessible system necessitates integration into primary healthcare, community-based care, and home-based care settings. Support for informal caregivers, such as family and community volunteers, is also essential. Providing palliative care should be recognized as an ethical imperative for all healthcare professionals, starting from the moment of relevant diagnosis.
WHO’s Role in Strengthening Palliative Care Globally
The World Health Organization (WHO) plays a pivotal role in advancing palliative care worldwide. Palliative care medicines, including pain relief medications, are included in both the WHO Essential Medicines List and the WHO Essential Medicines List for Children. 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. WHO guidelines, such as those for managing cancer pain, provide evidence-based recommendations for effective palliative care practices.
Following the landmark 2014 World Health Assembly resolution WHA67.19, WHO actively supports Member States in improving palliative care access as a core component of health systems, emphasizing primary healthcare and community/home-based care models. WHO’s efforts to strengthen palliative care are focused on:
- Integrating palliative care into global disease control and health system plans.
- Assessing the development of palliative care services worldwide.
- Developing guidelines and tools for integrated palliative care across various diagnoses and care settings.
- Supporting Member States in enhancing access to palliative care medicines through improved regulations and delivery systems.
- Focusing on palliative care for specific populations, such as people living with HIV and children (in collaboration with UNICEF).
- Monitoring global palliative care access and evaluating program progress.
- Developing indicators for assessing palliative care service quality.
- Advocating for adequate resources for palliative care programs and research, particularly in resource-limited countries.
- Building evidence for effective palliative care models in low- and middle-income settings.
By addressing these critical areas, WHO is working to ensure that individuals diagnosed with conditions requiring palliative care receive the comprehensive and compassionate support they need to live with dignity and the best possible quality of life.
