The right to die

Suicide law in Ireland has been a hot topic recently. Marie Fleming, a multiple sclerosis patient in the later stages of the illness, is seeking the right to commit suicide with the help of her long-term partner Tom Curran. She does not want her partner receiving criminal charges for assisting her in her dying wish, and went before the President of the High Court, Mr Justice Nicholas Kearns in Dublin.

Attempted suicide is no longer a criminal offense in Ireland since it was decriminalised in 1993. While self-harm is not seen as a form of attempted suicide, assisted suicide and euthanasia are still illegal under Irish law. This, however, was challenged at the High Court in December 2012.

Marie Fleming, 59 and former university lecturer, is in the last stage of MS, with very limited mobility and a variety of other symptoms. This type of MS is characterised by a gradual progression of the illness from its onset with no remissions all. Marie was diagnosed in 1986 and is now stuck in a wheelchair due to paralysed limbs and acute pain. It makes her dependent upon others for care and support, which means that major life changes were required.

Because of this, Mrs Fleming was looking to have the right to end her life the way she so wishes, with the help of a physician at a time of her choosing. Marie also argues that she wants it to be her own rational choice when she finds her life not to be valuable anymore. Mrs Fleming argues that the strict ban on assisted suicide is unconstitutional and goes against the European Convention on Human Rights (ECHR) since her dignity, autonomy and privacy is violated. Where able-bodied people are allowed to commit suicide, severely disabled people are denied the same treatment, and therefore discriminatory. Marie, as a result, wanted the Director of Public Prosecutions to issue guidance outlining which factors would be taken into account in deciding whether to prosecute assisted suicide.

As an MS patient myself, I try to understand why Marie Fleming wants to have legal rights to end her life the way she wishes to do. While I am nowhere near the stage Marie is in, it does beg the question why assisted suicide cannot be decriminalised.

It also makes me question my own future and wonder if there will be rights in place in regards to euthanasia if I would wish to end my life respectfully. I am firmly against suicide, and I fight hard to get nowhere near the stage Marie is in. Nevertheless, questions do linger. Will my dignity be put to the test until I draw my last breath? Will my family have to put up with me when they should lead their own lives, regardless of my illness and/or autonomy? Should whoever assisting me in my dying wish be sent to jail for helping me because the Irish constitution says so?

A competent adult has the right to refuse medical treatment even if death would be the outcome. Actively putting this death in the hands of another party is considered a totally different matter according to the three judges presiding over Mrs Fleming’s case. It “would be impossible to make sure the aged, the disabled, the poor, the unwanted, the rejected, the lonely, the impulsive, the financially compromised and emotionally vulnerable would not avail of this option to avoid a sense of being a burden on their family and society”.

“An absolute ban on assisted suicide is justified to protect vulnerable people from involuntary death and does not breach personal autonomy and equality rights under the Constitution and European Convention on Human Rights”.

For these reasons, the court rejected the constitutional claim and as Mr Justice Nicholas Kearns, with Mr Justice Paul Carney and Mr Justice Gerard Hogan, said, “unraveling “even a thread” of the ban, by even a limited constitutional finding in favour of Ms Fleming, would, or might, “open a Pandora’s box which thereafter would be impossible to close.”

Needless to say, the media had a lot to say about this. Newspapers, talk shows and anyone who had something to say about it, did. We were openly asked if we can include a partner, a doctor, a friend or someone else in our right to die. From my experience, most people said yes, euthanasia should be allowed in certain cases, including assisted suicide.

My native country allows euthanasia, and I have a clear wish myself that I would want to be assisted in some way should I be unable to do so with my own hands. Dignity is indeed a big word when you need help to use the bathroom, shower, prepare your own food etc. While I know my mum would definitely help, I could not ask the same of other family members. It is not a morbid thought; it is a realisation that people want to end their life in dignity, in style even.

Marie Fleming, MS patient

I do not deny that MS is not a vindictive illness. Uncertainty is an every single day issue because people with MS do not know which way they will wake up in the morning, or how they will be in a couple of hours. Because of this, we have to enjoy every minute of every day – carpe diem – and in my case, I want to show others that having MS is not the end of the road.

As a side note, I want to add though that the media reported about Mrs Fleming in quite an annoying way by continuously referring to her illness as ‘terminal’. True, when you check the meaning of ‘terminal illness’ it means “a disease that cannot be cured or adequately treated and that are reasonably likely to cause death to the patient in a relatively short time. This term is most commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular usage, it indicates a disease that will eventually kill the victim. For example cancer, heart disease, Lesch-Nyhan Syndrome, Ebola Hemorrhagic Fever.”

Despite the fact that people living with MS  never refer to their illness as being terminal, solicitors decided to use the word ‘terminal’ in court. What solicitors say in court, the media has to use the same terminology. It had a backlash on MS societies receiving calls from worried people, asking about the ‘terminal’ wording. Families and friends thought they were not told the whole story about their loved one’s MS. I myself had people questioning my own MS and honesty because they heard the media say that MS is a ‘terminal illness.’ Solicitors did not realise the impact it would have on others living with MS.

Absolutely, sometimes MS feels like a terminal illness, and it might get worse quickly. On the other hand, it also may stay level for decades. I see people much worse than I am when I have my medical checkup in the MS clinic, but I also see how others walk, talk and on their feet. Being ‘terminally ill’ is a phrase for people dying of cancer, not people living with an illness like MS. There are few cases where direct death was caused by MS.

In the end, the truly sad thing is courts denying people the right to live their own life and deal with death when someone is so obviously hurting. I wished the Catholic Church and criminal courts would stay out of something so personal. Sanctity of life is a personal matter, what you or I see in this is not up to a court to decide. Not now, not ever.

Signature Willeke-Maya

blog-awards-2018_winners-gold-mpu-e15637780089692018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland

◾ MyTherapyApp: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017
◾ MyTherapyApp: Best MS Blog for Simplicity 2018
◾ Everyday Health: Top 10 MS Blog of 2018
◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2018. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and with appropriate and specific direction to the original content.

11 thoughts on “The right to die

  1. It’s her choice to die or not, not anyone else. She is the one suffering, not the people who are determining whether it is “wrong” or not. It’s nobody’s business.

    1. Exactly, it is just sad that Marie had to go to court to get her wish granted, making it a public issue. Everyone has their own idea about it, I just hope that she can find a way to keep living, and if not, that her family will not be dragged to court over it.

  2. Thanks for such a well-balanced and thought out approach to this difficult subject. As a sociologist, I have done a good deal of research with people with MS and I think that your view is pretty representative.

    1. Thank you Jean! I wanted to write about this sooner but always put it off because it’s such a difficult subject.

      While I think assisted suicide should be decriminalised, I also want to say that life is so special, so great if only you let it. I do not say so because of religious views, because I think the Catholic Church should stay out of this. However I know that life is more precious than we often think it is.

      For those reasons I wished I knew Mrs. Fleming. She is a remarkable woman for taking on the criminal court, but what makes her believe her life is not valuable anymore? Why does she feel inadequate? (I always wonder about things like this because I love psychology so much).

      1. I agree that Mrs Fleming is remarkable and brave. I certainly can’t speak for her but my sense is that, for some people, knowing that they have a right to die if things become intolerable is what’s important and gives a feeling of control in the face of unmanageable pain.
        As you well know, no two cases of MS are the same but, for a small percentage, the road can be very tough and overwhelming with no let up. Mrs Fleming seems to fit that category and I can definitely understand her position, given the few people I have met who have been down that path. But, on the whole, I think most would agree that life is more precious that we very often realise ~ MS or not!

    1. Absolutely! It’s very hard cheering for one or the other. Unfortunately there is no middle ground according to the judges who denied Mrs Fleming her request.

  3. This is a difficult one. As a person with MS, I would be much happier if I knew that in the future, if it were the case that I became seriously disabled, I could terminate my life with help. I find it hard to believe that it is beyond the wit of man to come up with some answer to this, without compromising the vulnerable…

    1. Isn’t it just so, Sue? Nobody wants to live a life full of physical pain, stuck in a wheelchair all day while having to rely on others for every single thing. I do not know in how far religion is involved in the laws against assisted suicide but I will try to find out. Politics and religion have no place in matters like this. They do not walk in our shoes and therefore don’t know what life is like as a disabled person. Protecting the vulnerable is only seen from their standpoint, not from ours.

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