Urging governments to relieve suffering and ensure the right to palliative care
|Working together to advocate access to palliative care as a human right:
- European Association for Palliative Care (EAPC)
- International Association for Palliative Care (IAHPC)
- Worldwide Palliative Care Alliance (WPCA) and
- Human Rights Watch (HRW)
- The Union for International Cancer Control (UICC)
Access to palliative care is a human right under the right to the highest attainable standard of physical and mental health. In certain cases where patients face severe pain, failure to provide palliative care can also constitute cruel, inhuman or degrading treatment. Palliative care can effectively relieve or even prevent this suffering and can be provided at comparably low cost.
Yet, the governments of many countries throughout the world have not taken steps to ensure patients can realize this right. In many countries palliative care is not available at all or access to it is very limited. This causes millions of severely ill or dying people to suffer from pain and other preventable or treatable symptoms. This is true not only for patients with cancer but also for those with advanced heart, lung or kidney diseases, and progressive neurological diseases or from treatment resistant infectious diseases such as HIV /AIDS or tuberculosis. Palliative care also offers improved quality of life even for people in late stage dementia.
A right for palliative care
Access to palliative care is a legal obligation, as acknowledged by United Nations conventions, and has been advocated as a human right by international associations, based on the right to the highest attainable standard of physical and mental health. In cases where patients face severe pain, government failure to provide palliative care can also constitute cruel, inhuman or degrading treatment. Palliative care can effectively relieve or even prevent this suffering and can be provided at comparably low cost.
Yet, the governments of many countries throughout the world have not taken adequate steps to ensure patients with incurable illnesses can realize the right to access palliative care.
Definition of Palliative Care
According to the definition of the World Health Organization (WHO), palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care is interdisciplinary in its approach and encompasses the patient, the family and the community in its scope. In a sense, palliative care is to offer the most basic concept of care – that of providing for the individual needs of the patient wherever he or she is cared for, either at home or in the hospital.
Palliative care affirms life and regards dying as a normal process; it neither hastens nor postpones death. It sets out to preserve the best possible quality of life until death.
The European Association for Palliative Care, the International Association for Hospice and Palliative Care, the Worldwide Palliative Care Alliance, Human Rights Watch and the Union for International Cancer Control
• cardiovascular diseases and cancer account for the majority of deaths in developed countries and that most patients will suffer from pain, fatigue and depression, or other symptoms such as dyspnea in the course of the illness,
• palliative care has been proven to offer effective interventions for these patients as well as for other patients with end stage chronic obstructive pulmonary disease (COPD) or renal failure, neurological diseases such as multiple sclerosis or amyotrophic lateral sclerosis (ALS) and late stage dementia,
• palliative care offers a unique model for innovative health and social policies offering a focus on patients’ preferences together with a holistic approach combining knowledge (e.g. on symptom relief), skills (e.g. on communication) and attitudes (e.g. to encounter each patient as an individual person with a rich history).
• for developing countries HIV/AIDS continues to be a major cause of death, that patients who die of HIV/AIDS often face debilitating symptoms and that a considerable percentage of patients who receive treatment continue to experience pain, fatigue and other debilitating symptoms,
• other infectious diseases such as malaria and tuberculosis may progress to incurable stages and that, in such cases, patients require palliative care,
• the implementation of palliative care services has been shown to make an impact in developing countries, alleviating suffering and improving quality of life in patients with HIV/AIDS or other diseases,
• many patients will require support with psychosocial or spiritual problems with the progression of their disease,
• palliative care can effectively relieve this suffering and can be provided at relative low cost,
• the benefits of palliative care are not restricted to end of life care, as an early integration of palliative care has been proven to improve quality of life and reduce the need for burdensome aggressive treatments,
• in spite of the proven effectiveness, access to palliative care is limited or non-existent in many countries, particularly in developing countries, leading to unnecessary suffering in millions of patients every year,
Call on governments to:
1. develop health policies that address the needs of patients with life-limiting or terminal illnesses
• develop comprehensive health care policies that provide for integrated palliative care, along with other forms of health services,
• ensure that the laws include support to the relatives of patients during the time of care and after the time of death.
2. ensure access to essential medicines, including controlled medications, to all who need them
• identify and eliminate unduly restrictive barriers which impede access to controlled medications for legitimate medical use,
• ensure that they develop an appropriate system for estimating their need for such medications so as to ensure that availability is guaranteed without interruption,
• ensure that they establish safe and secure distribution and dispensation systems so that patients can access the opioid medications regardless of their prognosis, place of treatment or geographic location.
3. ensure that healthcare workers receive adequate training on palliative care and pain management at undergraduate and subsequent levels.
• adopt the necessary changes in the training curricula for healthcare providers (medical, nursing, pharmacy, psychology, etc) at undergraduate levels to ensure that all healthcare workers obtain basic knowledge about palliative care and are able to provide it to patients regardless of where in the healthcare system they work,
• support the development and implementation of postgraduate and specialty palliative care programs so that patients with complex cases can receive appropriate care,
• ensure that adequate continuing education courses in palliative care are available to healthcare workers.
4. ensure the integration palliative care into healthcare systems at all levels.
• design and develop plans to create and implement palliative care units, groups and programs according to morbidity and mortality indicators, and population dispersion data.
The signatories and the representatives of the regional and international organizations
• governments worldwide to ensure that patients and their families can realize the right to access palliative care by integrating such care into healthcare policies, as well as ensuring access to essential medicines, including opioid analgesics, is assured.
• major international organizations and forums such as the Council of Europe, the European Union, the World Health Organization, the World Health Assembly, the World Medical Association and the International Council of Nurses to promote the right to palliative care.
• regional and national palliative care associations to support a palliative care philosophy that includes not only the development of specialist services but is centered around a public health approach.
• academic institutions, teaching hospitals and universities in developing and developed countries to train and motivate healthcare professionals working in primary care to integrate palliative care in their services.
Express the hope:
• that the general public recognizes the need for access to palliative care for all and supports the Prague Charter through participation of social and media activities and in signing the petition.
Please read the compelling true stories from all over the world which demonstrate the importance of palliative care being accessible to all who need it!
Please see also the Prague Charter Translations.
Open Society Foundations: Health and human rights – a resource guide
This comprehensive document provides in chapter 4 background information on the international legal covenants and resolutions that confirm palliative care as a human right. The document is available online and as a download pdf-file, in English, Russian, Spanish and some other languages.
United Nations. Universal declaration of human rights
Cruel, inhuman and degrading treatment is prohibited under article 5 of the Universal Declaration of Human Rights proclaimed by the United Nations (UN) in 1948.
United Nations. International covenant for civil and political rights
Cruel, inhuman and degrading treatment is also prohibited under article 7 of the International Covenant for civil and political rights from 1966.
United Nations. International covenant on economic, social and cultural rights
Failure to ensure access to palliative care violates the human right to the enjoyment of the highest attainable standard of physical and mental health, as specified in article 12 of the International Covenant on Economic, Social and Cultural Rights from 1966.
International Association for Hospice and Palliative Care. Joint Declaration and Statement of Commitment on Palliative Care and Pain Treatment as Human Rights
This declaration was released in 2009 and forms the basis of the Prague Charter.