5.1 Human rights issues

The modern era has seen the articulation of a basic proposition: that palliative care should be viewed as a fundamental human right of all people. That proposition has been made in a context of, and in response to, clear inadequacies in the provision of palliative care around the world, absent or deficient national policies on pain and palliative care, restrictive opioid laws, and inadequate education of health professionals in all aspects of the care of people with life-limiting illnesses.

This chapter will examine:

Conscious of widespread deficits in the care of people throughout the world, the international pain and palliative care communities began, in recent years, to frame their advocacy in the language of rights. A series of declarations and statements emerged framing the provision of palliative care as a human right. These included the Cape Town Declaration (Mpanga-Sebuyira et al., 2003), the Korea Declaration (National Hospice and Palliative Care Associations, 2005), the Joint Declaration of and Statement of Commitment to Pain Management and Palliative Care as Human Rights (International Association for Hospice and Palliative Care (IAHPC) and the Worldwide Palliative Care Alliance (WPCA), 2008), the Panama Proclamation—Proclamation of Pain Treatment and the Application of Palliative Care as Human Rights (Latin American Federation of IASP Chapters and Foundation for the Treatment of Pain as a Human Right, 2008), the Lisbon Challenge (European Association of Palliative Care (EAPC), 2011) and the Prague Charter (EAPC, 2013).

These palliative care advocacy initiatives were concurrent to statements from within the international pain community. Indeed, as part of their response to the deficits around the world in pain management, clinicians, ethicists, and medical lawyers began, in the 1980s, to argue that pain management was a universal human right. To Michael Cousins, a past President of the International Association for the Study of Pain (IASP), ‘the relief of severe unrelenting pain would come at the top of a list of basic human rights’ (Cousins, 1999). These assertions were eventually followed by authoritative statements by multiple national and international pain associations articulating a right to pain management. Finally, the inaugural Global Day Against Pain in 2004 had as its theme ‘Pain Relief: A Universal Human Right’. Subsequent international declarations, including the Joint Declaration of and Statement of Commitment to Pain Management and Palliative Care as Human Rights (IAHPC and WPCA, 2008), the Proclamation of Pain Treatment and the Application of Palliative Care as Human Rights (Latin American Federation of IASP Chapters and Foundation for the Treatment of Pain as a Human Right, 2008), the Declaration of Montréal (International Pain Summit of the IASP, 2011), the WMA Resolution on the Access to Adequate Pain Treatment (World Medical Association, 2011), and The Morphine Manifesto (Pallium India et al., 2012) have all endorsed this approach.

A summary of these statements and declarations appears in Box 5.1.1.

While admirable in rhetoric and potentially strong tools of advocacy, do these statements have any foundation in human rights law? That foundation rests on two pillars: the international conventions on drug control and the international right to health.

The international drug control conventions were promulgated for a dual purpose: to monitor and control the use of both licit and illicit controlled substances. The International Narcotics Control Board (INCB), the body established to oversee compliance with the conventions, stated the importance of ensuring ‘adequate availability of narcotic drugs . . . for medical and scientific purposes while ensuring such drugs are not diverted for illicit purposes’ (INCB, 2010, p. iii). The Single Convention on Narcotic Drugs (1961) expressly reminds and obliges signatory nations that the medical use of opioids is indispensable to the relief of pain and suffering (United Nations Conference for the Adoption of a Single Convention on Narcotic Drugs, 1961).

Several UN conventions articulate a right to the provision of health care. The central and most general statement of this is contained in the International Covenant of Economic, Social and Cultural Rights (ICESCR) (UN General Assembly, 1966, Article 12). The right to health is articulated in several other conventions: Article 12, Convention on the Elimination of All Forms of Discrimination Against Women (UN General Assembly, 1979), Article 24, Convention on the Rights of the Child (UN General Assembly, 1989), Article 5(e), International Convention on the Elimination of All Forms of Racial Discrimination (UN General Assembly, 1965), and Article 25, Universal Declaration of Human Rights (UN General Assembly, 1948).

Given that pain management and palliative care fall within health care, the international right to health is a source of obligation on signatory governments in these areas. Other potential sources of a human rights foundation to palliative care emerge from the international conventions:

Assuming that the right to pain management and palliative care exists under international human rights law, what obligations flow from that right? It is important to note that the rights articulated in the international conventions rest on individual nations, not on clinicians. Signatory countries are mandated to appear before that committee to outline their fulfilment of the rights enumerated in the covenant, including the right to health.

The content of the obligation on signatory countries in the provision of adequate pain management and palliative care can be gleaned from the Committee that oversees the ICESCR. In 2000, it issued a General Comment on the right to health (CESCR, 2000). In essence it stated that this right contained the following ‘interrelated and essential elements’: availability of health goods and services, accessibility of health services to all citizens, acceptability in terms of culture and religious beliefs, and quality in terms of skills and expertise. These foundation stones—availability, accessibility, acceptability, and quality—are useful points of reference in assessing the adequacy of any nation in the fulfilment of its obligations in the provision of palliative care.

The Committee went on to describe the ‘core obligations’ of all signatory nations, irrespective of resources. They included obligations to ensure access to health facilities, goods, and services on a non-discriminatory basis, to provide essential drugs, as defined by the WHO, and to adopt and implement a national public health strategy. Interpreting this Comment in the context of palliative care, this would oblige nations to ensure a universal access to services, the provision of basic medications for symptom control and terminal care, including analgesics, and the adoption and implementation of national pain and palliative care policies. In addition to the ‘core obligations’ the Committee also enumerated obligations ‘of comparable priority’. These included health education, access to information, and the provision of appropriate training for health professionals. In the context of palliative care, a ‘main health problem’ in all countries, this would obligate governments to ensure the education of health professionals in the principles and practice of palliative care and, further, provide access to the general community to information regarding it.

Do the obligations that derive from human rights law accord with recommendations articulated from other sources? And if so, is there a synergy between them? The first source is the WHO; the second is the international palliative care community itself. The WHO laid down minimum standards of palliative care expected of countries. Those standards included the adoption of national palliative care policies, ensuring the availability of essential medications, including morphine across all health-care settings and ensuring the education and training of health professionals. Those standards are consistent with the WHO ‘Public Health Strategy for Palliative Care’ (Sjernsward et al., 2007) and have been consistently replicated in the multiple statements and declarations by the principal international pain and palliative care representative bodies. Synthesizing these sources—the Committee overseeing the right to health care, the WHO, and the international palliative care community—a consensus begins to emerge. Whether as an obligation under international human rights law or as recommendations through the WHO and international palliative care bodies the content of that consensus includes the following:

Irrespective of the strength of the argument that the provision of palliative care constitutes a human right, it could only truly gain hold if the UN itself acknowledged its merit. The first and vital steps in that acknowledgement came in statements made by two UN Special Rapporteurs on human rights. In a statement made to the UN Human Rights Council in 2008, the Special Rapporteur on the Right to Health placed palliative care firmly within the obligations that derive from the international right to health:

Many other right-to-health issues need urgent attention, such as palliative care . . . Every year millions suffer horrific, avoidable pain . . . Palliative care needs greater attention. (Hunt, 2008)

Similarly, the UN Special Rapporteur on Torture in his report to the Human Rights Council in 2009 stated ‘the de facto denial of access to pain relief, if it causes pain and suffering, constitutes cruel, inhuman or degrading treatment or punishment’ (UN Human Rights Council, 2009) and that everything should be done to overcome all obstacles—regulatory, educational, and attitudinal—to the provision of palliative care and access to appropriate medications such as opioids. A similar statement was made by the Rapporteur in a report to the UN Human Rights Council in 2013 (UN Human Rights Council, 2013). In addition, the two Rapporteurs made a joint statement to the Chairperson of the Commission on Narcotic Drugs in 2008. After reviewing the inadequacies of pain management and palliative care around the world, they stated that under international human right to health governments should provide essential medicines and that the lack of access to such medication, including for pain management, was a global human rights issue (Nowak and Grover, 2009).

That statement then proceeded to make clear, practical recommendations for all nations that they:

These statements were a major breakthrough. They not only represent the most explicit linkage of human rights UN, but they also provide clinicians and advocates a clear statement of recommendations to present to the health ministries of individual countries.

From its foundation, the WHO has promoted the universal right to health care (WHO 1946). The WHO has stated that under its Access to Controlled Medicines Programme (ACMP), access to WHO Essential Medicines is part of a nation’s human rights obligations (WHO, 2011). Subsequent to the Montréal Statement on the Human Right to Essential Medicines (University of Montreal, 2005), the WHO requested the IAHPC prepare a list of Essential Medicines for Palliative Care (De Lima and Doyle, 2007).

In the modern era, the WHO has expressly linked the overall right to health care with certain aspects of care, including pain management and access to analgesia. They did so expressly in a major document: Ensuring Balance in National Policies on Controlled Substances: Guidance for Availability and Accessibility of Controlled Medicines (WHO, 2011). That document was followed shortly thereafter by a landmark collaboration between the WHO, the INCB, and the UN. They jointly released recommendations for nations to ensure they accurately report their opioid requirements for medical purposes to the INCB and a guide for nations on estimating those requirements (INCB et al., 2012).

There are several counterarguments to the proposition that pain management and palliative care are basic human rights. The first is the nature of human rights themselves. For some nations the concept of individual human rights is contrary to a view of a collective view of society whereby the paramount obligation of a government is the collective welfare of the people and society rather than necessarily meeting the needs of an individual. A response to that argument in the context of palliative care would be, given that mortality is universal and that the caring for individuals with serious illness will come to most members of society at some point, the provision of adequate palliative care services fulfils both an individual-based view of society and a collective one.

The second is the danger of arguing in isolation. Any discussion about access to palliative care services must be predicated upon the fulfilment of many other interrelated needs of a person with a serious life-limiting illness—water, sanitation, warmth, bedding, and a habitable environment. It would be artificial to separate ‘a right to palliative care’ from a general right to health, housing, water, and sanitation—social determinants of health that are inadequate in many communities living in low socioeconomic conditions. That interconnectedness was made express by the General Comment on the right to health (CESCR, 2000). The other perspective that needs broadening is the sense of palliative care itself. Rather than sitting in isolation, the discipline of palliative care articulates well with broader public health approaches of promotive, preventative, curative, and rehabilitative health.

The third is misunderstanding. That these rights demand perfection. They do not. They simply ask of governments to pursue the fulfilment of these rights progressively. That these rights are Western ideals and are unattainable in nations of limited resources. Studies have clearly shown that the provision of palliative care services including palliative care education, policy development, and legislative reform to ensure availability of essential palliative care medications are neither expensive nor unsustainable. Indeed, the growth of palliative care services in resource-poor environments demonstrates their feasibility and the application of basic strategies can provide much benefit.

The final contrary argument is that the above discussion is largely confined to the direct obligations on governments, not individual clinicians. That is true. To examine the obligations of clinicians in any society one must look at both the professional responsibility of a health professional to a patient and the legal framework of the country. In terms of professional responsibility one could argue that there is a universal obligation on doctors to manage the pain of their patients. Certainly, the Declaration of Montréal (International Pain Summit of the IASP, 2011) sponsored by the IASP, included this obligation on health professionals. Indeed, there is a direct connection between obligations on national governments and clinicians. The lack of fulfilment by the former makes it impossible for the fulfilment by the latter. If the infrastructure of pain management—availability, accessibility, education—is absent then it is extremely difficult for doctors to adequately respond to the pain management needs of their patients. Beyond ethical obligations, obligations that may arise from a legal right emerge from the domestic laws of that country.

There are few things more elemental than pain, they tell us of the fundamental equality, the fundamental dignity that all of us should enjoy. (Longstaff, 2012)

The basic argument linking pain management, palliative care, and human rights has moved from advocacy and assertion to action. In numerous discussions, workshops, and submissions on the subject of pain management and palliative care, a foundation argument has been the universality of these issues and the responsibility of governments, morally and legally, to do better in providing adequate access to these services. Those arguments can be made significantly more robust where there is a clear foundation not only in evidence-based practice but also in human rights law. In addition to strengthening the argument, an approach based on human rights carries with it a coherent structure upon which to assess the performance of any individual nation in its provision of palliative care.

How can this approach be used practically? There are multiple points of possible application. A human rights perspective may be incorporated in:

In the modern world, the universality of mortality has not been met by a universality of response. For patients with life-limiting illnesses, there remains widely divergent access to palliative care services, availability and accessibility of analgesic medication, and training of health professionals in this area. A study in 2011 by the WPCA reported that, out of the world’s 234 countries, only 136 (58%) have one or more hospice or palliative care services available to seriously ill people and their families and carers (WPCA, 2011). Many nations are either poorly engaged or simply unresponsive to these needs. An approach based on human rights has emerged in the interrelated disciplines of pain management and palliative care. That approach has a clear foundation in international human rights law. It has been acknowledged by the WHO, the World Medical Association, and from within the structure of the UN itself and remains an important agent for advocacy, change, and development.

It is clear that palliative care services worldwide are inadequate to meet the needs of patients with life-threatening and life-limiting illness and there is much work to be done to ensure that palliative care is accessible, available, and affordable to people needing this care. A human rights approach to facilitate development of these services provides a strong foundation plan for the implementation of palliative care services within countries.