Why we need a human rights framework for the end of life

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Sharon Youngsmall

A United Nations (UN) Convention on the Rights of the Dying and Seriously Ill could improve global standards for all people at the end of life, proposes Sharon Young of Kingston University.

End of life care provision varies widely throughout the world. Standards of care available to the dying and seriously ill depend upon the resources and priority afforded them by each nation state, which is in turn influenced by political, economic, social and cultural factors. Similarly, the options for individuals to self-determine the manner and timing of their death vary, and are dependent upon statutory provision in law and healthcare policy.

Palliative care, recognised as a medical specialism in Britain since 1987, has greatly advanced and improved end of life care in Western nations. A palliative care framework, where resources are available provides the opportunity for high quality care to the dying individual and their family that may help relieve suffering at the end of life and provide some dignity in dying. However, this approach is often outside the remit of many less developed countries especially those with a weak economy and infrastructure where out of necessity the needs of the living are prioritised.

The relative argument

Nation-states express different cultural and social attitudes towards death and dying. There are also political and economic implications of defining and implementing a framework for end of life based upon a palliative care approach that would be universally acceptable to all nations. Different approaches to death and dying are classed as relative; this ‘relative critique’ is illustrated when comparing a model of palliative care that promotes dignity for the dying in the Western world with deaths from the recent Ebola crisis in Western Africa.

By May 2015 the total number of Ebola cases surpassed 27,000. During this outbreak, UK media broadcast graphic pictures of individuals dying in distress; there was limited or no personal support or relief from suffering nor adequate equipment to manage contagion risks or house the dying. How can Western nations promote high quality palliative care as a global aspiration when people are dying horrific, undignified deaths in large numbers without access to the most basic care and sanitation?

The World Health Organisation has loosely attempted to define a model of Palliative Care as

“an approach that improves the quality of life of patients and their families facing the problem 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”.

However, this definition is highly dependent upon the will and ability of individual states to make resources available. It is also subject to interpretation and is fraught with ambiguities and limitations on a number of different levels; what is quality of life? What is classed as life- threatening illness? What is suffering? Impeccable assessment, by whom? What treatment is available? This prompts the question: is there another solution?

A universal solution

Notions of ‘rights’ have been evident throughout time, but the Universal Declaration on Human Rights adopted by the UN in 1948 was the first global framework to set out “a common standard of achievement for all peoples and all nations”. It proclaims “recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family”.

Human rights, like palliative care, could be criticised as primarily serving Western interests and admittedly some nations are less able to comply with these standards due to limited resources, but this declaration is important as an international mechanism that aspires to recognise a set of universal principles based on a common understanding of humanity. Dying is a personal experience that emerges from historical, social, cultural and political processes and discourses that have changed over time, but this does not negate the body as a natural entity.

Sociologist Bryan Turner suggests a theory of human rights could be defended through an understanding of the body based upon human frailty as a universal feature of human existence; we are all human, we are all vulnerable and we will all die. Turner suggests that a notion of collective sympathy arises from our vulnerability as human beings and uses this to implicitly ground human rights in a common social act of recognition. This theory could explain why human rights are necessary and why they are universal.

A human rights framework

Having ‘a right to’ something is a frequently heard expression in modern society. It suggests there are an increasing number of values deemed worthy of protection and that these values are recognised and legitimised by the addition of a ‘rights’ label. The apparently rapidly expanding core of social and moral controversies framed as human rights claims may reflect social, cultural, and ethical factors. People are also assigned particular categories such as women, children and the disabled who each demand their own set of rights protection and therefore the list of human rights grows longer.

An example of the proliferation of human rights discourse is evident in UK healthcare policy; the NHS Constitution for England (2013) uses a rights framework in regard to the care of both living and dying patients. It states that all patients have “the right to be treated with dignity and respect, in accordance with your human rights”.

Through its Human Rights Instruments, the United Nations defines global frameworks that increasingly address and protect the personal issues of vulnerable people, for example the Convention on the Rights of Persons with Disabilities (2006) and the Optional Protocol to the Convention on the Rights of the Child on the sale of children, child prostitution and pornography (2006). Various mechanisms exist at national, regional and international levels to ensure enforcement and monitor compliance of these human rights obligations.

I propose that a UN Convention on the Rights of the Dying and Seriously Ill would improve the experience of dying for all individuals and promote universal standards for a more dignified death. This global framework on end of life that takes account of social, cultural, political, and economic differences would be drafted by an international, interdisciplinary UN committee. The resulting convention would be grounded in respect for common humanity and the frailty of the dying.

Sharon Young
@SyPhD

References

Turner, Bryan S. (1993) Outline of a Theory of Human Rights. Sociology 27(3):489-512

Sharon Young is a final year PhD student of Politics and Human Rights at Kingston University. She has a background in healthcare and an MA in Human Rights.

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