Second Opinion: We need to change the narrative on end-of-life care

The touching video by Donal Walsh, the heroic Kerry teenager who died earlier this year, was a stand-out moment in efforts to combat the heartbreak of suicide in Ireland. He illuminated afresh the trauma of suicide, responsible for at least three times as many deaths as road-traffic incidents.

I was surprised at how little this sad context featured in media coverage of the recent legal action by Marie Fleming and her partner, Tom Curran, seeking to establish suicide as a human right. The subject of a moving RTÉ documentary, the ongoing deterioration of her neurological status is clearly very challenging.

No doctor could fail to empathise with her difficulties and would wish to ensure the support and possibilities of modern care, from palliative care through pain services to psychological support. Equally, she could be assured that any refusal of life-sustaining treatment would be honoured.

A particular concern in the case, however, was the approach of the Irish Human Rights Commission in its submission as amicus curiae (friend of the court).

The remit of the commission is broad, presumably including all those affected by suicide, as well as those who might be affected by any change in its status.

Decriminalisation
Decriminalisation of suicide was a humane response, aimed at avoiding stigma and further hurt for both completed and attempted suicide, and promoting help and support.

It was never seen as expressing a societal desire to view suicide as a “human right” that might be facilitated by the Constitution’s Article 40.1 on equality.

Yet this is precisely what the commission argued. Drawing on Irish case law that removed barriers for people with disabilities to beneficial and positive opportunities – to testify in camera or to plead in a different court which might offer a lower penalty – the commission argued that it was an affront to equality for them not to have the same access to end their lives as able-bodied people who can carry out the act of suicide unaided.

This stance stretches the fabric of societal discourse to breaking point and beyond, and is likely to weaken public trust in proportionality within the Irish Human Rights Commission.

Its argument progressed to a landmark judgment of the European Court of Human Rights that a ban on assisted suicide was not a breach of human rights: one would be hard-pressed to extract this central fact from its submission.

Cardinal principles
Next was the UN Convention on the Rights of Persons with Disability. Despite mentioning at the outset the interlinked nature of its four cardinal principles – equality, autonomy, participation and solidarity – the first two themes were pursued at the expense of the second two.

The dangers of an unfettered hegemony of autonomy are well recognised in clinical ethics and are obvious here.

The phrase “ultimate expression of autonomy” for ending one’s life reflects this. 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 it can clearly no longer be exercised after that point.

Human rights are an important aspect of healthcare, but it is often challenging to navigate between conflicting demands. A national commission for human rights should be helpful in formulating a balanced response. However, this mandates education, consultation, proportionality and inclusivity in potentially divisive matters, an approach not evident in the commission’s submission.

Indeed, at a recent conference of the commission and the Law Society that reviewed the topic, I was disturbed by how under-informed some of the legal speakers were about current medical knowledge and practice, in particular relating to ageing and professional attitudes to palliative care. This is worrying, as occult ageism and prejudice against disability may engender negative attitudes to end-of-life care.

Highest standard of healthcare
The commission would do better to consider end-of-life issues under a key aspect of the UN charter of human rights: the right to the highest attainable standard of healthcare.

Access to services for people with disabling illness, such as stroke and dementia, is poor by European standards, and palliative services for non-cancer illnesses remain underdeveloped.

Building on previous work on access to and equality in health services for those with disabilities might better promote trust in this important vehicle for human rights in healthcare, as well as nurturing a therapeutic and kinder vision of our future.

Prof Des O’Neill is a consultant in geriatric and stroke medicine