Addressing suffering involves taking care of issues beyond physical symptoms. Palliative care uses a team approach to support patients and their caregivers. This includes addressing practical needs and providing bereavement counselling. It offers a support system to help patients live as actively as possible until death.
Palliative care is explicitly recognized under the human right to health. It should be provided through person-centered and integrated health services that pay special attention to the specific needs and preferences of individuals.
Palliative care is required for a wide range of diseases. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%) and diabetes (4.6%). Many other conditions may require palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis.
Pain and difficulty in breathing are two of the most frequent and serious symptoms experienced by patients in need of palliative care. For example, 80% of patients with AIDS or cancer, and 67% of patients with cardiovascular disease or chronic obstructive pulmonary disease will experience moderate to severe pain at the end of their lives. Opioids are essential for managing pain.
Opioids can also alleviate other common distressing physical symptoms including breathlessness. Controlling such symptoms at an early stage is an ethical duty to relieve suffering and to respect a person’s dignity.
Insufficient access to palliative care
Each year an estimated 56.8 million people are in need of palliative care, most of whom live in low- and middle-income countries. For children, 98% of those needing palliative care live in low- and middle-income countries with almost half of them living in Africa.
Worldwide, a number of significant barriers must be overcome to address the unmet need for palliative care:
- national health policies and systems often do not include palliative care at all;
- training on palliative care for health professionals is often limited or non-existent; and
- population access to opioid pain relief is inadequate and fails to meet international conventions on access to essential medicines.
According to a WHO survey relating to noncommunicable diseases conducted among 194 Member States in 2019: funding for palliative care was available in 68% of countries and only 40% of countries reported that the services reached at least half of patients in need (1).
The International Narcotics Control Board found that in 2018, 79 per cent of the world’s population, mainly people in low- and middle-income countries, consumed only 13 per cent of the total amount of morphine used for the management of pain and suffering, or 1 per cent of the 388 tons of morphine manufactured worldwide. Although that was an improvement over 2014, when 80 per cent of the world’s population consumed only 9.5 per cent of the morphine used for the management of pain and suffering, the disparity in the consumption of narcotic drugs for palliative care between low- and middle-income countries and high-income countries continues to be a matter of concern (2).
Other barriers to palliative care include:
- lack of awareness among policy-makers, health professionals and the public about what palliative care is, and the benefits it can offer patients and health systems;
- cultural and social barriers, such as beliefs about death and dying;
- misconceptions about palliative care, such as that it is only for patients with cancer, or for the last weeks of life; and
- misconceptions that improving access to opioid analgesia will lead to increased substance abuse.
What can countries do?
National health systems are responsible for including palliative care in the continuum of care for people with chronic and life-threatening conditions, linking it to prevention, early detection and treatment programmes. This includes, as a minimum, the following components:
- health system policies that integrate palliative care services into the structure and financing of national health-care systems at all levels of care;
- policies for strengthening and expanding human resources, including training of existing health professionals, embedding palliative care into the core curricula of all new health professionals, as well as educating volunteers and the public; and
- a medicines policy which ensures the availability of essential medicines for managing symptoms, in particular opioid analgesics for the relief of pain and respiratory distress.
Palliative care is most effective when considered early in the course of the illness. Early palliative care not only improves quality of life for patients but also reduces unnecessary hospitalizations and use of health-care services.
Palliative care needs to be provided in accordance with the principles of universal health coverage. All people, irrespective of income, disease type or age, should have access to a nationally- determined set of basic health services, including palliative care. Financial and social protection systems need to take into account the human right to palliative care for poor and marginalized population groups.
As part of multidisciplinary teams, the nursing workforce should be trained in palliativecare skills, especially those who work with patients with serious illness.
Specialist palliative care is one component of palliative care service delivery. But a sustainable, quality and accessible palliative care system needs to be integrated into primary health care, community and home-based care, as well as supporting care providers such as family and community volunteers. Providing palliative care should be considered an ethical duty for health professionals.
WHO response
Palliative care medicines, including those for pain relief, are included in WHO Essential Medicines List and the WHO Essential Medicines List for Children. Palliative care is recognized in key global mandates and strategies on universal health coverage, noncommunicable diseases, and people-centred and integrated health services. WHO Guidelines for the pharmacological and radiotherapeutic management of cancer pain in adults and adolescents were released in 2019 (3).
In 2014, the first ever global resolution on palliative care, World Health Assembly resolution WHA67.19, called upon WHO and Member States to improve access to palliative care as a core component of health systems, with an emphasis on primary health care and community/home-based care. WHO’s work to strengthen palliative care focuses on the following areas:
- integrating palliative care into all relevant global disease control and health system plans;
- assessing the development of palliative care services;
- developing guidelines and tools on integrated palliative care across disease groups and levels of care, addressing ethical issues related to the provision of comprehensive palliative care;
- supporting Member States in improving access to palliative care medicines through improved national regulations and delivery systems;
- a special focus on palliative care for people living with HIV, including development of guidelines;
- promoting increased access to palliative care for children (in collaboration with UNICEF);
- monitoring global palliative care access and evaluating progress made in palliative care programmes;
- developing indicators for evaluating palliative care services;
- encouraging adequate resources for palliative care programmes and research, especially in resource-limited countries; and
- building evidence of models of palliative care that are effective in low- and middle-income settings.
(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