The right to die (updated)

Suicide law in Ireland has been a hot topic in 2013. Marie Fleming, an MS patient in the latter 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 to battle it out.

Attempted suicide is no longer a criminal offence 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 has 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, people with severe disabilities are denied the same treatment and is 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 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 in Ireland.

Suicide and assisted suicide is something that needs to be seen in the very personal context of time, the life and circumstances of the person looking for a way out. Sadly, this is something each family has to live with.

Nevertheless, questions do linger. Will my dignity be put to the test when 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 also had a lot to say about this. Newspapers, talk shows and anyone who had something to say about it, constructive or not, did. I myself have been openly asked if I can or want to include a partner, a doctor, a friend or someone else in my 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 to be assisted should I be unable to do so by my own hands. Dignity is indeed a big word when you need help around the clock to use the bathroom, shower, talk, eat etc. While I know my mum would help, I could not ask the same of other family members. It is not a morbid thought; it is a realisation that people should want to end their life in dignity, in style even when life becomes unbearable.

MS is 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 even, how they will be in a couple of hours. We might wake up with reduced vision in one eye or unable to walk. Or, we might feel pretty good right now but in an hour we might be so tired that we have to return to bed once again. Because of this uncertainty, we have to enjoy every minute of every day and live life with the precept ‘carpe diem’ tattooed on our forehead.

Because of its maliciousness, in my case, I want to show others that having MS is not the end of the road. Not yet. On the contrary, it is the beginning. It’s a scary journey, but one to be had either way.

Also, I want to add this to how Marie’s story is being played out in the press: incessant reporting about MS being a ‘terminal illness’.

According to Cancer.org,  “A terminal illness is an irreversible illness that in the near future will result in death or a state of permanent unconsciousness from which the person is unlikely to recover. Examples of terminal conditions include advanced cancers, multiple organ failures, or massive heart attacks and strokes. A terminal illness is defined as one in which the patient will die “shortly” whether or not medical treatment is given.” 

When I checked with RTÉ – our national television channel – why journalists continue to use the “terminal” reference, they advised me that they have to follow the jargon used by solicitors in court, despite the fact that people living with MS never refer to their illness as terminal. I am unaware if Marie’s solicitors used this terminology to add more drama to her wish, and if so, it was a poor choice.

It had a backlash however on MS branches and societies receiving calls and emails from worried people wondering if they were terminally ill, and families and friends thought they were not told the whole story about their loved one’s MS. I myself had people checking in with me because of the continued reference, while I have never called myself terminally ill.

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 check-up in the MS clinic, but I also see how others talk and are busy on their feet many years after being diagnosed. 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 decide whether or not assisted suicide is an option when someone is so obviously tormented. 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.

The right to life does not import the right to die according to the court. For all these reasons, I want to have a cure for multiple sclerosis to stop families being dragged to court for helping their relatives to die the way they want to. Too many great minds have perished with a total loss of dignity and understanding.

This has to end.

Now.

For more on this case, please read:
http://www.irishcentral.com/news/MS-sufferer-Marie-Fleming-has-chosen-how-she-will-die-despite-Supreme-Court-ruling-206092531.html

http://www.thejournal.ie/marie-fleming/news/

http://www.independent.ie/irish-news/courts/marie-fleming-says-state-should-pay-her-legal-costs-29449036.html


©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’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 Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

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6 thoughts on “The right to die (updated)

  1. This is a very relevant issue that not many are willing to approach. I believe at late stages of MS, it is quite possible to choose to end one’s life simply by refusing some kinds of care. The end, however, would most likely be quite uncomfortable and it could be seen as humane to ease the pain and hasten the process with medication. Lots of gray area in this subject.

  2. I read this shortly after you posted. First, you did a damn good job of presenting the issue.It needs to be talked about, so thank you for that.
    After much thought, I would want myself or another to have the right to a dignified death, on one’s own terms. My heart goes out to Ms Fleming. The the only issue I have with her particular request is that future safeguards be put in place to avoid malicious intent.
    It makes me weep to have her feel as if she is not worth anything anymore.

  3. I believe very strongly in a person’s right to die with dignity. I’ve chosen to euthanize pets who were near the end of their lives and clearly in pain; it’s an extremely difficult decision but ultimately, I think, the more compassionate one. Why shouldn’t competent adults be able to make this decision for themselves, and be supported / assisted by the people they trust? It seems very cruel that it is possible to provide such mercy to other animals but not to each other – not even when the person is able to tell us that they want to end their own suffering.

    On the other hand, I can also see the concern about people abusing legal euthanasia or assisted suicide in ways that harm vulnerable populations. It would be very difficult to try and legalize euthanasia / assisted suicide while also protecting these populations. I’d like to say that doesn’t mean we shouldn’t try, but there is a risk of increased human suffering while the law is being revised.

    I also have very personal reasons for being concerned about the thin line between euthanasia and suicide. Is there really any difference between a person suffering horribly and wanting to end their own life as a result of mental illness, and someone suffering horribly and wanting to end their own life as a result of medical illness? How do we determine who is making the decision to die in their right mind, and who needs to be protected from their own desires? I wish the solution were easy – especially that mental illness could be treated and the desire to end one’s own life could end with the suffering. While treatment can help a lot of people with mental illness, too many find that the available treatments just don’t work for them, or they don’t have access to treatment, period. I imagine this is similar to the dilemma people with MS and other chronic, progressive medical illnesses face.

    It’s a very complicated matter but it’s definitely worth discussing. I salute you for your courage in bringing up the topic, as well as the compassion and empathy you show in how you handle it.

  4. I know someone who has multiple sclerosis who is now totally dependent on someone helping her to do everyday activities. Her mental abilities are now also being affected by the disease. It’s really sad how quickly it progressed.
    I personally would like euthanasia to be legalised. I don’t think that it’s like suicide at all because suicide can be committed for a variety of reasons while euthanasia would only be for terminal patients who would die anyways, this would just be a more dignified way to leave the earth

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