Let's have a big conversation in Ireland - open, honest and balanced
By Dr Kevin Fitzpatrick, Director - EPC, International and HOPE Ireland
Brendan O'Connor has thought about Bernadette Forde's death more deeply than most. (Ireland's Sunday Independent 3 May 2015), though his conclusions are still wrong.
Forde was failed, miserably. But not by the lack of a euthanasia/assisted suicide law. That is still the wrong answer to the right questions.
For a 'big conversation' about the complex subject of euthanasia/assisted suicide to work, it must be open, honest and balanced at all turns, not just in rare articles by more intelligent journalists - who still go badly wrong.
O'Connor chose to reinforce the dreadful idea that 'this, or any disabled life is not worth living'. The vast majority of people with multiple sclerosis do not commit suicide or even want to (never mind the rest of us disabled people). It is not just because Forde was battling multiple sclerosis that she fell into despair, enough to want to commit suicide. By all reports, she had no real nursing care let alone very good palliative care; and she was isolated from her family apart from one niece.
Disabled people are a minority amongst those who come to suicide. Tragically, it is mostly younger, non-disabled men who find themselves in what is surely the loneliest place on the planet. But when we can we try to help them, prevent the ultimate act of despair.
So again and again, why is our reaction to disabled people so different from when an otherwise 'healthy' person says 'I am going to commit suicide'? The insidious notion that obviously a disabled life is not worth living is so, so dangerous and damaging. It is actually rank disability discrimination. And it is the other side of the terrible coin of treating disabled people as 'useless mouths'. Look what cashing that coin led to in Germany.
This poster (from around 1938) reads: "60,000 Reichsmark is what this person suffering from a hereditary defect costs the People's community during his lifetime. Fellow citizen, that is your money too.
We all wish for the 'velvet cushion death' O'Connor describes - but we must not romanticise it. Not every relative gathered at every bedside is there out of pure love. Not everyone gets to have a home death - in our time, not even many do.
The 'dying role' is extremely important. I commend O'Connor for having read Ira Byock; would that more journalists took his lead. But our rituals are not merely some shallow attempt to comfort ourselves. The shallow idea is that we are more sophisticated in our time. That is the mistake Frazer famously made in the Golden Bough. Beware the 'god' of science. We do not become better people by developing more science. These rituals reflect something that can be described as the 'majesty' of death, its role in our lives. Today, we too often treat death as though it were like stepping off a bus. In a Kleenex generation everything is disposable.
To his credit, O'Connor speaks about some of these 'higher-level' concerns: how dying in our own clothes, at home, and done well, can be a profound and intimate death, for the loving living, maybe even for the person dying. That is where the majesty of death can lie.
Forde committed suicide. That she was left in such a state, where she came to believe suicide was her only option, is terrible. That is 'our' failure. Not that she should have committed suicide in a foreign death clinic at ten grand a pop, or that a law, endangering so many others to death should be absent.
Some disabled people, especially when so isolated, unsupported, come to believe there only option is death - which is no choice at all of course. Respecting and understanding their fears of a painful death or of not wishing to be a burden on others, we have do so much better. Anyone faced with such isolation must have good palliative care: including proper pain-control, but also proper nursing. Social care is important too, and genuine human support perhaps most of all. These are what help a person to a different view of what is left of life.
We must oppose legalising euthanasia/assisted suicide for reasons of the terrible consequences that have come where laws have been passed. Even a minimal scratch at the surface reveals all the dangers inherent in such laws. The evidence is overwhelming and that is where the 'big' conversation needs to be honest.
Bernadette Forde deserved better. But the better she deserved was absent.
The rest of us, disabled people especially, also deserve better, but the easy acceptance that our disabled lives are not worth living is not it. Nor is the easy jump to the false notion that the only, right answer to suffering is to end the life of the sufferer, and to give all those involved legal immunity.
Join Kevin for a free conference and the launch of HOPE Ireland in Dublin 6th June CLICK HERE for details!