Understanding the Most Common Diagnoses in Palliative Care

Palliative care is a crucial aspect of healthcare that focuses on improving the quality of life for patients and their families facing problems associated with life-threatening illness. It addresses suffering beyond just physical symptoms, taking a holistic, team-based approach to support patients and their caregivers. This includes managing practical needs, offering emotional and psychosocial support, and providing bereavement counseling. Palliative care aims to help patients live as actively and comfortably as possible until the end of life, affirming the human right to health and emphasizing person-centered, integrated services tailored to individual needs and preferences.

While palliative care is applicable to a wide range of conditions, certain diseases are more frequently associated with the need for this specialized care. Understanding the most common diagnoses in palliative care is essential for healthcare providers, patients, and families to ensure timely and effective support. This article delves into the prevalent conditions that necessitate palliative care, drawing from global health data and expert recommendations to provide a comprehensive overview.

Prevalent Diseases Requiring Palliative Care

Palliative care is not limited to any single disease; it is relevant for anyone facing a life-limiting illness. However, the majority of adults who require palliative care suffer from chronic diseases. According to the World Health Organization (WHO), the most significant categories of diseases driving the need for palliative care include:

Cardiovascular Diseases

Cardiovascular diseases represent the largest group of conditions necessitating palliative care, accounting for approximately 38.5% of adult cases. These encompass a range of heart and blood vessel disorders, such as heart failure, coronary artery disease, and stroke. Patients with advanced cardiovascular disease often experience debilitating symptoms like chest pain, breathlessness, fatigue, and anxiety, all of which can be effectively managed through palliative care interventions to improve their comfort and overall well-being.

Cancer

Cancer is another leading diagnosis in palliative care, affecting about 34% of adults in need. From diagnosis through treatment and beyond, palliative care plays a vital role in managing cancer-related symptoms and treatment side effects. This includes pain management, nausea control, fatigue management, and emotional support for patients facing various types of cancer at different stages. Palliative care ensures that patients with cancer maintain the best possible quality of life throughout their journey.

Chronic Respiratory Diseases

Chronic respiratory diseases, such as chronic obstructive pulmonary disease (COPD) and asthma, contribute to 10.3% of the palliative care need among adults. These conditions often cause persistent breathlessness, coughing, and fatigue, significantly impacting daily life. Palliative care for respiratory diseases focuses on symptom relief, improving breathing through various therapies, and enhancing patients’ ability to remain active and engaged in their lives.

AIDS (Acquired Immunodeficiency Syndrome)

While advancements in treatment have transformed HIV into a more manageable chronic condition, AIDS remains a significant diagnosis requiring palliative care, accounting for 5.7% of adult cases. Patients with AIDS may experience a variety of symptoms, including pain, infections, and weakness, particularly in advanced stages or when co-infections are present. Palliative care in the context of AIDS aims to alleviate these symptoms, provide psychosocial support, and improve the overall quality of life for individuals living with HIV/AIDS.

Diabetes

Diabetes, a widespread chronic metabolic disorder, contributes to 4.6% of the palliative care need. While often managed effectively, diabetes can lead to severe complications such as kidney failure, nerve damage, and cardiovascular issues, requiring palliative care in advanced stages. Palliative care for diabetes-related complications focuses on managing pain, addressing specific organ dysfunction, and supporting patients in maintaining their independence and comfort.

Children receiving palliative care

A healthcare team provides palliative care to children, highlighting the interdisciplinary approach and the focus on improving quality of life for young patients and their families facing serious illnesses.

Other Conditions

Beyond these major categories, numerous other conditions may necessitate palliative care, including:

Kidney Failure: Chronic kidney disease and end-stage renal disease often involve significant symptom burden, such as fatigue, nausea, and pain, requiring palliative care to enhance comfort and manage complications.
Chronic Liver Disease: Conditions like cirrhosis and liver failure can lead to debilitating symptoms, including pain, fluid buildup, and cognitive impairment, for which palliative care offers crucial support.
Multiple Sclerosis and Parkinson’s Disease: These neurological disorders are progressive and can cause a range of physical and cognitive symptoms that benefit from palliative care’s holistic approach to symptom management and quality of life improvement.
Rheumatoid Arthritis: Severe rheumatoid arthritis can lead to chronic pain, mobility limitations, and systemic complications, making palliative care valuable in managing symptoms and enhancing patient well-being.
Neurological Diseases: A broad spectrum of neurological conditions, including dementia, amyotrophic lateral sclerosis (ALS), and others, often require palliative care to address progressive symptoms and support patients and families.
Congenital Anomalies: Children born with severe congenital anomalies may require palliative care from birth to manage complex medical needs and improve their quality of life.
Drug-Resistant Tuberculosis: In cases of drug-resistant tuberculosis, palliative care can play a vital role in managing symptoms, improving comfort, and providing psychosocial support during prolonged and challenging treatment.

Symptom Management in Common Palliative Care Diagnoses

Regardless of the specific diagnosis, pain and difficulty in breathing are among the most frequent and distressing symptoms experienced by patients requiring palliative care. For instance, studies indicate that a significant majority of patients with AIDS or cancer (80%), and a substantial proportion with cardiovascular disease or chronic obstructive pulmonary disease (67%), will suffer from moderate to severe pain towards the end of their lives.

Opioids are essential medications for managing moderate to severe pain in palliative care. They can also effectively alleviate other distressing physical symptoms, including breathlessness. Early and effective symptom control is not only an ethical imperative to relieve suffering but also a fundamental aspect of respecting a person’s dignity and ensuring the best possible quality of life when facing serious illness.

Addressing Insufficient Access to Palliative Care

Despite the clear need and benefits of palliative care for a wide range of diagnoses, access remains insufficient 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 more pronounced, with 98% of those needing palliative care living in resource-limited settings.

Several significant barriers contribute to this unmet need worldwide:

Lack of Integration into National Health Systems: Palliative care is often absent or poorly integrated into national health policies and systems, hindering its accessibility and availability.
Limited Training for Healthcare Professionals: Insufficient or non-existent training on palliative care for health professionals results in a lack of expertise and capacity within the healthcare workforce.
Inadequate Access to Opioid Pain Relief: Restrictive regulations and supply chain issues often limit access to opioid medications for pain management, particularly in low- and middle-income countries, despite international guidelines emphasizing access to essential medicines.
Low Awareness and Misconceptions: Lack of awareness among policymakers, healthcare professionals, and the public about the nature and benefits of palliative care, coupled with misconceptions about its scope and purpose (e.g., only for cancer patients or the imminently dying), further impedes its uptake.
Cultural and Social Barriers: Cultural and social beliefs surrounding death and dying can also create barriers to accepting and seeking palliative care.
Concerns about Substance Abuse: Misguided fears that improved access to opioid analgesia will lead to increased substance abuse can create unnecessary restrictions on essential pain relief medications.

Improving Global Palliative Care Access

To bridge the gap between need and access, countries must prioritize the integration of palliative care into their national health systems. This entails several key actions:

Developing and Implementing Supportive Policies: National health policies should explicitly include palliative care services, integrating them into the structure and financing of healthcare systems at all levels of care, from primary care to specialized services.
Strengthening Human Resources through Education and Training: Investing in the education and training of healthcare professionals across all disciplines is crucial. This includes embedding palliative care principles into core curricula for new professionals and providing ongoing training for existing practitioners, as well as educating volunteers and the public.
Ensuring Access to Essential Medicines: Medicines policies must guarantee the availability of essential medications for symptom management, particularly opioid analgesics for pain and respiratory distress, while implementing appropriate safeguards to prevent diversion and misuse.

Palliative care is most effective when introduced early in the course of a serious illness. Early integration not only enhances the patient’s quality of life but also has been shown to reduce unnecessary hospitalizations and the overall utilization of healthcare services. Palliative care should be considered an essential component of universal health coverage, ensuring that all individuals, regardless of income, disease type, or age, have access to these vital services. Financial and social protection systems must also recognize and uphold the human right to palliative care, particularly for vulnerable and marginalized populations.

The nursing workforce, as part of multidisciplinary palliative care teams, requires specialized training in palliative care skills, especially those working with patients facing serious illnesses. While specialist palliative care is a critical component, a sustainable and accessible system necessitates integration into primary healthcare, community-based care, and home-based care, supported by family members and community volunteers. Providing palliative care should be recognized as an ethical responsibility for all healthcare professionals.

WHO’s Role in Advancing Palliative Care

The World Health Organization (WHO) actively champions the global integration and expansion of palliative care. Palliative care medicines, including pain relief medications, are included in the WHO Essential Medicines List and the WHO Essential Medicines List for Children. WHO also recognizes palliative care in key global strategies related to universal health coverage, noncommunicable diseases, and people-centered health services. The WHO Guidelines for the pharmacological and radiotherapeutic management of cancer pain in adults and adolescents (2019) further exemplify this commitment.

In 2014, the landmark World Health Assembly resolution WHA67.19 urged WHO and Member States to improve access to palliative care as a core element of health systems, emphasizing primary healthcare and community/home-based care models. WHO’s ongoing efforts to strengthen palliative care focus on:

Integrating palliative care into global disease control and health system plans.
Monitoring the development of palliative care services worldwide.
Developing guidelines and tools for integrated palliative care across various diseases and levels of care, addressing ethical considerations.
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 access and evaluating progress in palliative care programs.
Developing indicators to assess palliative care service quality.
Advocating for adequate resources for palliative care programs and research, especially in resource-limited countries.
Building evidence for effective palliative care models in low- and middle-income settings.

By understanding the most common diagnoses requiring palliative care and addressing the barriers to access, we can work towards a future where palliative care is readily available to all who need it, ensuring dignity, comfort, and improved quality of life for individuals and families facing life-threatening illnesses worldwide.

References:

(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