Palliative Care as a Human Right
The concept of a right to palliative care has emerged over the past 20 years. It has been advocated for and expanded upon in journal articles, statements, resolutions, and international declarations. It has been put forward as a response to some of the common barriers facing effective palliative care delivery. However, the right must have a clearly defined legal basis if it is to be of relevance. It is most commonly linked to the international right to health. This is, in part, reflective of the influence which the international palliative care community has had on this topic. This post seeks to explore the concept of palliative care as a human right. This requires consideration of the legal foundations as well as how the content of the right has been defined over time. Naturally, there are challenges in identifying a right to palliative care and it is therefore necessary to reflect on avenues for future development.
The Basis of a Right to Palliative Care in International Law
Palliative care engages a range of human rights including the right of autonomy, bodily integrity, equality, and protection from inhuman or degrading treatment. However, it is the right to health which has had a central role in providing a legal basis for the right to palliative care. Brennan (2007; 2008), and Gwyther et al. (2009) among others have proposed that the international right to health can be interpreted in a manner which implies a right to palliative care. This emphasis on the right to health is also echoed in several palliative care declarations.
The starting point in considering the right to health is the Universal Declaration of Human Rights (UDHR). Article 25 of the UDHR provides that ‘Everyone has the right to a standard of living adequate for the health of himself and of his family…’. The right to health is also asserted in the International Convention on the Elimination of All Forms of Racial Discrimination, the Convention on the Elimination of All Forms of Discrimination against Women, and the Convention on the Rights of the Child.
Of particular importance to this discussion is the International Covenant on Economic, Social, and Cultural Rights (ICESCR). Article 12 of the ICESCR sets out that ‘The State Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.’ Ireland is a signatory of the ICESCR and is therefore bound to protect the right to health. It is however a right of progressive realisation meaning that steps taken to protect and promote the right must be commensurate with the resources of the State. Accordingly, the right is somewhat aspirational. Guidance on the interpretation of the right to health was set out by General Comment No. 14, issued by the Committee that oversees the Covenant. The General Comment sets out an obligation on States ‘to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, … to preventive, curative and palliative health services’. This reference to palliative services emphasises the connection between the provision of palliative care and the right to health. It is therefore not surprising that this interpretation is cited favourably by the international palliative care community.
Advocating for a Right to Palliative Care
Palliative care declarations have been described as a new form of intervention (Inbadas et al. 2016) and serve as a focal point for defining palliative care priorities. Several of these declarations have called for the recognition of a right to palliative care. An early example of this was the Cape Town Declaration of 2002 which arose from the founding of the African Palliative Care Association. This asserted that ‘Palliative care is a right of every adult and child with a life-limiting disease’.
Subsequent milestones in this debate include the 2004 International Working Group from the European School of Oncology, 2005 Korea Declaration, 2008 Panama Proclamation, 2008 Joint Declaration and Statement of Commitment to Pain Management and Palliative Care as Human Rights, 2011 Lisbon Challenge, 2013 Prague Charter, 2014 World Health Assembly Resolution, and the 2014 Mumbai Declaration. The Panama Proclamation was the first to really engage with the legal framework and described the right to pain treatment and palliative care as implicit in the UDHR, the WHO Constitution, and General Comment No. 14.
Across these declarations, several key themes emerge and provide a sense of the architecture and content of the right to palliative care. Consequently, it would be necessary to respond effectively to the following elements to deliver on the right:
- Ensure the availability of appropriate drugs, including opioids
- Establish and integrate education programmes on palliative care at all levels
- Ensure the provision of palliative care at all levels of care
- Establish comprehensive health care policies which guarantee sufficient palliative care
- Ensure equitable access to palliative care
The earlier declarations addressed these themes in a relatively broad manner whereas much more detailed engagement is visible in the Prague Charter and the World Health Assembly Resolution. These declarations have a valuable advocacy role but there is a substantial challenge in moving from an abstract consideration of the right to locating the right in the domestic framework.
The Challenge of Developing a Right to Palliative Care
Brennan et al. (2008) identified five difficulties in promoting an international human right to palliative care. There are challenges posed by the practical application of socio-economic rights; a danger of misinterpretation; a danger of arguing in isolation; a tension between public health imperatives and human rights; and the problem of enforcement. The latter point highlights the lack of effective enforcement mechanisms if the right is grounded in the international right to health. There are no relevant powers of enforcement or sanction. Instead, any oversight is merely persuasive in nature. A further challenge is the status of international declarations. The declarations have brought attention to the argument but do not provide the type of sustained engagement which is necessary to bring about change at the national level.
Avenues for Development
It is important to recognise that palliative care is a human rights issue which has both a national and an international dimension. At the international level declaring that there is a human right to palliative care is an important tool for advocacy. Brennan et al (2008) also suggested that there is an element of intention here. It signals that palliative care is ‘no longer a luxury of resource-rich nations, it is a universal right with an international responsibility.’ There is still much to do at the international level, including greater engagement with the UN Special Rapporteur (SR) on the Right to Health. Moreover, there has been some discussion of a UN Convention on the Rights of Older Persons and this may provide an opportunity to recognise a right to palliative care. In this respect, in 2015 the Inter-American Convention on Protecting the Human Rights of Older Persons became the first treaty to explicitly articulate a right to palliative care.
There are of course limitations associated with a right to palliative care which is grounded in the international right to health. At the national level it is therefore important to reflect on the legal framework, which is composed of legislation, case law, and the Irish Constitution. This provides a rich basis for substantial human rights engagement. The norm defining role of the legal framework can therefore provide a valuable resource at the domestic level in delivering on the content of the right to palliative care. This can be achieved by reflecting on rights of equality, autonomy, bodily integrity, and protection from inhuman or degrading treatment. In this way, the combination of rights can be drawn upon as a tool for advocacy but may also serve to interrogate the standards of palliative care provision.
As palliative care continues to grow in importance it is essential that the national and international palliative care communities have a clear voice in these debates and take an active role in shaping legislation and professional regulations. The palliative care community should not become the passive subject of regulation but should utilise all facets of the legal framework to best achieve and deliver on their goals.
Frank Brennan, Liz Gwyther, and Richard Harding, ‘Palliative Care as a Human Right’ (Open Society Institute 2008)
Liz Gwyther, Frank Brennan, and Richard Harding, ‘Advancing Palliative Care as a Human Right’ (2009) 38(5) Journal of Pain and Symptom Management 767
Hamilton Inbadas, and others, ‘Palliative Care Declarations: Mapping a New Form of Intervention’ (2016) 52(3) Journal of Pain and Symptom Management 7