A Human Rights Treaty Finally Recognizes the Right to Palliative Care
By Gabriela B. de Luca
For years, international conventions have protected the rights of children, women, and people with disabilities—groups recognized as vulnerable to marginalization and human rights violations. Yet the rights of older persons, who are susceptible to the same violations, have been woefully neglected in the human rights framework. Finally, there’s a sign that this is beginning to change.
In late June, the Organization of American States released a resolution in which member countries adopted the Inter-American Convention on the Human Rights of Older Persons. It was immediately signed by Argentina, Brazil, Chile, Costa Rica, and Uruguay, and completed in record time, with drafting efforts initiated in 2012 and final text approved in 2015.
The convention recognizes that older persons should enjoy all existing human rights and fundamental freedoms on an equal basis, and is based on general principles including dignity, independence, proactivity, autonomy, and full and productive integration into society.
The resolution couldn’t be timelier. Advances in science, technology, and medicine have helped make the older population one of the most rapidly growing age groups in the world. Yet older persons are often denied access to health, social benefits, work, food, and housing. They bear a disproportionately large burden of chronic, life-limiting, and incurable illnesses, and they often experience severe, debilitating pain.
This is the first instrument of its kind to explicitly refer to palliative care. It requires countries to provide access to palliative care without discrimination, to prevent unnecessary suffering and futile procedures, and to appropriately manage problems related to the fear of death. It also mandates that countries establish procedures to enable older persons to indicate in advance their will and instructions with regard to health care interventions.
The convention defines palliative care as:
the active, comprehensive, and interdisciplinary care and treatment of patients whose illness is not responding to curative treatment or who are suffering avoidable pain, in order to improve their quality of life until the last day of their lives. Central to palliative care is control of pain, of other symptoms, and of the social, psychological, and spiritual problems of the older person. It includes the patient, their environment, and their family. It affirms life and considers death a normal process, neither hastening nor delaying it.
The resolution is not without its flaws, however. For instance, it does not address important legal aspects of palliative care, such as concerns related to inheritance laws and the future of the patient’s property, access to social benefits, patient confidentiality, and the care of children and grandchildren. These legal concerns are closely tied to emotional distress during end-of-life care, and addressing them is part of palliative care’s holistic approach.
The Inter-American Convention established a follow-up mechanism to monitor progress in implementing its provisions. Countries must submit periodic reports to a committee of experts, and people or NGOs may submit petitions concerning any violation of the convention’s provisions.
The convention will enter into force as soon as two signatory countries ratify it, which is expected to happen soon. Once it does, human rights advocates in Latin America will finally be able to rely on a legally binding instrument to demand accountability for the failure to respect older persons’ rights.
But the effects of the convention could reverberate even further, helping to interpret the human rights of older people elsewhere in the world. For example, it comes at a critical moment to influence the African Regional Human Rights System, which is currently in the process of considering a draft Protocol on the Rights of Older Persons in Africa. And it strengthens civil society’s long-standing call for a UN convention on older persons, which was repeatedly raised during this year’s sixth session of the UN Open-Ended Working Group on Ageing.
We hope that the Inter-American Convention can set an important precedent for the drafting of other human rights instruments that include the right to palliative care. From the right to decide about end-of-life care, to relief from unnecessary suffering, to the need for adequately trained health professionals, palliative care is a human right the world must come to recognize.
Gabriela B. de Luca is a program officer for law and health with the Open Society Public Health Program.