13 Mar, 13 | by BMJ
It is perhaps stating the obvious that the best mode for exercising human rights is while still alive: as the Vikings stated rather bluntly in their eddaic saga Hávamál, “there is nothing the dead can do” (1). So it was with some sadness that I read, and re-read, the submission of the Irish Commission of Human Rights to the Irish Supreme Court in an appeal seeking protection from prosecution in assisted suicide.
The case relates to a woman with advanced multiple sclerosis and her husband, who were the subject of a documentary screened on Irish television earlier this year. Their story is very moving, their relationship clearly firm and loving, and the ongoing deterioration of her neurological status clearly very challenging.
No clinicians looking after patients with chronic diseases could fail to empathise with the difficulties of the position of this couple and certainly would wish to offer them the support and possibilities that modern care could offer, from palliative care through pain services to support. Equally, the couple could be assured that any refusal of life-sustaining or supporting treatment would be honoured. Their physicians would also try to reassure the couple that their stated belief in the documentary that pain management shortens life is not true.
The background in Ireland is one of a country coming to grips with the increasingly open recognition of the trauma of suicide, responsible for at least three times more deaths than those caused by road traffic accidents. In this, it mirrors growing awareness and government strategies in the United Kingdom and elsewhere.
Yet little of this painful backdrop is reflected in the documentation from our Human Rights Commission: if the commission is working on some unstated dichotomization of suicide into “rational” and “irrational,” this is a distinction that sits better in the world of forced-choice “certainty” of legal rulings than among the reality of the complex interactions between the human condition and health.
The approach of the Commission lawyers to the decriminalisation of suicide smacks of legalism rather than of the broader issues at play. The decriminalisation of suicide was a humane approach to this issue, aimed at avoiding stigma and further hurt in terms of both completed suicide and attempted suicide, and emphasising the need for help and support for people in this situation. It was certainly never seen to be an expression of a societal desire to extend access to suicide as a human right, or to position suicide as an act that equality legislation might facilitate.
Yet this is precisely what the lawyers seek to argue. Drawing on Irish case law for disabled people whereby barriers previously prevented them from clearly beneficial and positive opportunities—the ability to testify in camera or to plead in a different level of court, which might offer them the possibility of a lower level of penalty—they argue that it is an affront to equality not be allowed to have the same access to end their lives as able-bodied people who can carry out the act of suicide themselves.
To suggest that access to suicide for the able-bodied might constitute an unjustified advantage over those with disability stretches the fabric of societal discourse to breaking point and beyond. It also threatens to undermine public support for human rights by weakening trust in proportionality within the Irish Human Rights Commission.
The zeal of the Human Rights Commission to use arguments in favour of this position is exemplified by their use of a landmark ruling in 2002 of the European Court of Human Rights, Pretty v UK. This determined that a ban on assisted suicide was not a breach of human rights: you would be hard-pressed to extract this central fact from the submission of the Human Rights Commission.
The legal team then turned to the UN Convention on the Rights of Persons with Disability. Despite mentioning at the outset the interlinked nature of the four cardinal principles—equality, autonomy, participation, and solidarity—the submission then pursued the first two themes at the expense of the latter two. The dangers of an unfettered hegemony of autonomy is well-recognised in philosophy and clinical ethics and is blindingly obvious here.
Indeed, the use of the phrase “ultimate expression of autonomy” for ending one’s life is also unhappy. While “ultimate” in literal terms of being the last action, it is not ultimate in terms of the best or highest exercise of autonomy, as autonomy can clearly no longer be practised after that point.
Human rights are an important aspect of healthcare, although it can be challenging to navigate between the hierarchies of rights, sometimes in conflict with each other.
A national commission for human rights is an important component of formulating a balanced societal response to supporting the recognition and nurturing of human rights. However, a national brief mandates due consultation, proportionality, and inclusivity in potentially divisive matters. This is particularly important in terms of legal issues since the law is anethical by nature and its deliberations often black and white in nature.
It is a pity for human rights in Ireland that the Human Rights Commission chose a legalistic and unbalanced approach to this issue. The commission might usefully have liaised with clinicians and ethicists in developing its submission, as the complexities of permissive attitudes to assisting in death for those with disability might then be more obvious to the commission and its lawyers.
Perhaps more to the point is the low profile on the commission’s website of activity relating to a more relevant aspect of the UN charter to people with disability, that of the right to the highest attainable standard of healthcare. Access to services for people with disabling illness, such as stroke, is very poor by European standards; the forthcoming national audit of dementia is also likely to make depressing reading; and palliative services for non-cancer illnesses are still under-developed.
Developing a sharp focus on access and equality for those with disability to these services would restore trust in this potentially important vehicle for human rights in healthcare in Ireland.
1. O’Neill D. Learning from the Vikings: Hávamál and occupational rehabilitation, Occup Med, 2013 (in press)
Desmond O’Neill is a consultant physician in geriatric and stroke medicine, and a co-principal investigator in the Irish National Audits of Stroke Care and Dementia Care.