Palliative care advocacy using the international human rights framework
The modern human rights movement has played an increasingly important role in establishing the duty of governments to make effective health services available without restriction or discrimination. Whether through UN resolutions calling for the scale-up of anti-retroviral treatment for HIV, constitutional litigation to lift restrictions on reproductive health care, or laws protecting the right of people with mental illness to live in the community, human rights advocates have been steadfast allies to those in the public health community advancing access to effective, evidence-informed health services.
Palliative care represents a new and promising frontier for human rights advocacy. The right to full human dignity, which lies at the core of all international human rights treaties, clearly cannot be enjoyed by those suffering unrelieved yet treatable pain. Whether governments intentionally inflict pain through torture, allow it to persist by maintaining unnecessary and ill-informed restrictions on pain medication, or fail without justification to provide the necessary training to health workers to administer pain medication, they undermine the dignity of those who suffer as a result. Freedom from treatable pain is fundamental to health care, but it is also about more than health care: it is about the ability to live and flourish as a full and respected member of society.
Human dignity finds expression in numerous specific guarantees of international law, such as the right to the highest attainable standard of health (Article 12 of the International Covenant on Economic, Social and Cultural Rights [ICESCR]) and the right to be free from torture and cruel, in human or degrading treatment or punishment (Article 7 of the International Covenant on Civil and Political Rights [ICCPR]). These are legally binding treaties that have been ratified by nearly every nation on earth. Their provisions are reflected in many national constitutions and are enforceable at the national level through litigation and at the regional international level through a variety of treaty-monitoring mechanisms, complaints procedures, and courts.1
The precise content of Article 12 of the ICESCR and Article 7 of the ICCPR (and their equivalent provisions in other human rights instruments) has been interpreted over time by courts, UN bodies, and human rights experts. While there have been some references to palliative care in this jurisprudence, there remains much work to be done in strengthening international, regional, and national human rights jurisprudence to recognise the human rights of those needing palliative care.2
In a recent statement to the Human Rights Council, Paul Hunt, the United Nations Special Rapporteur on the Right to the Highest Attainable Standard of Health noted that ‘palliative care needs greater attention’ and called on the Council to use the occasion of World Hospice and Palliative Care Day (October 11, 2008) to give palliative care ‘the attention it richly deserves.’ Hunt noted regulatory barriers to pain-relieving drugs that fail to strike the right balance between protecting people from drug dependence and meeting genuine medical needs (UN Human Rights Council, 2008). While Article 7 of the ICCPR has not been specifically interpreted to include access to palliative care, both the (non-binding) European Charter of Patients’ Rights and the Declaration on the Promotion of Patients’ Rights in Europe situate access to palliative care within the right to be free from unnecessary suffering. Human rights treaties have also been interpreted to guarantee access to palliative care without discrimination based on age or race.
Of course, the rights of people with life-limiting illnesses are not limited to relief from pain or even access to health services. Palliative care emphasises all aspects of a person’s life, which should include the enjoyment of a full range of legal and human rights. For this reason, an increasing number of hospices and palliative care programmes are beginning to integrate legal support into their services to assist patients with issues such as writing a will, planning for guardianship of children, and gaining access to social benefits. The stress and abuse that can result from not having a will, a plan for the continued care of one’s children, or a social grant to which one is legally entitled can be as serious an affront to human dignity as the denial of pain medication. Palliative care is unique and visionary in its recognition of the full physical, emotional, moral, and spiritual needs of patients. This makes it a perfect fit for a wide range of human rights advocacy.
The recent statement by Paul Hunt comes at a time of increasing mobilisation by the palliative care community to use human rights tools to advance their cause. In August 2008, a group of palliative care advocates issued a Joint Declaration and Statement of Commitment on Palliative Care and Pain Treatment as Human Rights. This Declaration has gained widespread support and is available for sign-on at www.hospicecare.com/resources/pain_pallcare_hr/. It represents not only a promising new tool to advocate for the rights of patients, but also a symbol of the power of partnership between the palliative care and human rights communities.
Author
Jonathan Cohen, LLB, MPhil, directs the Law and Health Initiative of the Open Society Institute’s Public Health Programme. From 2002-06, he was a researcher with the HIV/AIDS and Human Rights Program at Human Rights Watch, where he conducted numerous investigations of rights violations linked to the AIDS epidemics in sub-Saharan Africa, southeast Asia, and North America. Jonathan, who has degrees from Yale College, the University of Cambridge, and the University of Toronto, acknowledges Mary Callaway, Tamar Ezer, Dr Kathleen M. Foley, and Diederik Lohman for their contributions to the ideas contained in this article.
Contact: Jonathan Cohen
Email: jcohen@sorosny.org
End notes
See ‘Using human rights mechanisms’, in Open Society Institute and Equitas, Health and Human Rights: A Resource Guide, online at: www.equalpartners.info/Introduction/intro_4HRMechs.html.
2 See ‘Which are the most relevant international and regional human rights standards related to palliative care?’, in OSI and Equitas, Health and Human Rights: A Resource Guide, online at: www.equalpartners.info/Introduction/intro_4HRMechs.html.
References
UN Human Rights Council (2008) Statement by Paul Hunt: UN Special Rapporteur on the Right to the Highest Attainable Standard of Health. March 11, 2008.