Sunday, 6 May 2018

The case for physician assisted dying - one MSer’s view

If reading about death and MS is too difficult for those of you with the disease, please skip this piece. I do not want to offend or hurt anyone. This is just my view.


Over the past few months, the BartsMS blog has published views on legally assisted dying from two neurologists who specialise in treating those with multiple sclerosis. Prof Giovanonni writes he wants legally assisted suicide in the UK as an option for him and his family, but as a healthcare professional he does not “want to go near it.”
Prof Coles, who also is a Church of England priest, does not support it becoming legal in the UK. He believes suicide leaves deep wounds in those left behind; worries vulnerable people will - inadvertently - feel pressured by such a law and he wants to offer “hope that life with disability and dependence is worthwhile and valuable, that all life is precious.”
Now comes my turn. I have had MS for the past eight years. Caveat: so far, my MS is relapse-remitting and is fairly mild. Each day I do not have to contend with severe symptoms and pain - knowing there is a good chance tomorrow maybe even worse. That said, MS has brought me despair and depression. It haunts me - and it haunts my future.
I have always supported physician-assisted suicide. But before my MS diagnosis, if you asked me why - I would have mumbled something about individual choice. To be honest, I hadn’t given the subject much thought. Why would I? I was healthy and fairly young.
Then I was diagnosed with MS. Just before my 43rd birthday, I suffered a severe brainstem attack which left me semi-paralysed on my right side and partially blind. As I sat in my hospital bed trying to guide a fork full of shepherds pie into my mouth and watching as it spilt all over my hospital gown - something inside shifted. I suddenly realised my life ahead would very likely include disability.
Physically I recovered from that attack. Emotionally - it took longer. In an attempt to grapple with my diagnosis, I started meeting others with MS - including those with advanced MS. It was then the cruel realities of the disease became apparent: from breathing to bladder struggles, the pain and the reliance on constant care. Would I be able to cope living like this? More importantly, would I want to?
I don’t think I would. This is why I have come to believe, very strongly, there should be a law in the UK which allows medically assisted dying for those with a terminal, incurable disease. Clearly, there is a need. According to Dignitas, one British person every eight days travels to their clinic in Switzerland to die. Nearly 60% are women and the most common reason for pursuing assisted suicide is having a neurological disease (47%).
It is also, to me, a question of equality. A trip to Dignitas or to other suicide centres in Switzerland costs more than £10,000. What happens to those who can not afford it? I think it is wrong that only those who are better-off can choose to die with the help of a doctor.
Finally, it is also a question of quality of life - and death. As readers of this blog know, MS can be a wretched, awful disease. If my MS becomes too severe, I want the choice to be able to die in peace - in my own bed. I also do not want the burden of care to fall onto my partner and my family.
To put it bluntly, I want a good death. Knowing a law was in place to allow a physician to help me - would be a huge relief to me.

I would be very curious to know what others with MS believe on this subject. As I wrote earlier, my view is merely that - just a view. Please let me know what your thoughts are. We are all on an unknown path.
By Rachel Horne (MSer & Journalist)

14 comments:

  1. Throughout my adult life I have thought, off and on, about people having a “legal” choice to end their life. When I was younger, and before my MS diagnosis, I had a different scale of what was an unacceptable quality of life (QoL) and therefore at what point I would want to end my life.

    As for what I consider now to be unacceptable for my own QoL – some combination of the inability to feed myself, lack of swallowing reflex, inability to communicate, uncontrolled pain, minimal or no functional vision.

    I do understand the concerns that some disabled people could be pressured into ending their life by making them feel they are a burden or that they have to comply with someone else’s definition of a good QoL. My eldest niece has severe physical (tetraplegia) and communication (deaf and non-verbal) disabilities but has a good QoL.

    Adults should be allowed to reach their own conclusion about the circumstances in which their QoL becomes unacceptable and they wish their life to come to and end.

    While this post is about actively ending one’s life, there are pro-active choices we can already make in the UK about refusing treatment. You can make Advance Decisions now to refuse specific treatments (including life-sustaining treatments) at a point in the future. Each treatment to be refused should be named as well as the circumstances in which you want to refuse treatment. An advance decision is legally binding as long as it complies with the Mental Capacity Act, is valid and applies to the situation.

    I hadn’t really thought about Advance Decisions until recently when a friend went through a really tough time. PML resulted in locked-in syndrome. I don’t know whether, in hindsight, my friend would have created Advance Decisions to refuse treatments such as assisted breathing and artificial nutrition & hydration but it has clarified my own views about the circumstances in which I would want to refuse specific treatments. I am currently in the process of discussing my thoughts with my medical team before creating the legally binding document.

    Anyway, back to pro-active life ending – suicide is a word heavy with negative connotations - preventing someone from ending their life peacefully and with dignity is akin to torturing them by keeping them alive against their will. I hope that I don’t have to endure years of very poor quality of life because the law prevents someone from carrying out my wishes to put me out of my misery.

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  2. I can understand that you may want to make suicide easier if that is your choice and you might feel right now you would choose suicide as an option. A good death with friends and family around you with a doctor giving the final dose of legal medication as an MSer I think is rosy tinted spectacles. I’m really well too with my MS and I anticipate getting really ill /disabled at some point and that might include mental illness. I don’t want additional pressure to commit doctor aided suicide. I wouldn’t trust a doctor who felt it was part of his job to help me kill my self.

    If I did want to commit suicide (and I hope I am never so mentally ill to feel that way) illegal opiates are widely available in my town. Anyone can have a good death at the hands of a heroin dealer, friends who have OD’d and lived have told me it was utterly painless and liberating. But it’s not just you is it - it’s all the other people around you and the medical staff. I think I might be coming across very harshly but personal choice for you has a significant impact on others.

    As an MSer people’s view of my disabilities has been affected by the court battles for the right to die. I’ve had people assume I will want to have this so called choice. I don’t want it, I don’t want doctors to have it and I don’t want the Tory state to push people into death anymore than they are doing now. To assume that the impact will be benign and as you think it will be is a high risk strategy and I don’t want to be part of the experiment. Thanks but no thanks

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  3. I wholeheartedly agree. I supported assisted dying for decades before my diagnosis. My mother was also in favour of it long before her drawn out decline into being bedridden and unable to speak or swallow. Thankfully she had, with my help, completed an Advance Decision which prevented tube feeding and this allowed her to die. However palliative care was poor and she suffered a lot. Her last years would have been so much happier if she had known that the decision to die was hers to take and it would have enabled her to enjoy what time she had without the constant anxiety of what would happen next.

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  4. I totally agree with you Rachel. As an MSer who just missed out on the DMTs when I turned SPMS the same year as they became available, and am now more advanced, I definitely agree. I am just about able to be independent and cope on my own, but as my walking ability is disappearing and my arm strength is poor, I can see myself needing full-time care within the next 5 years or so. I do not want to be dependent on randomly appearing care workers arranged by an underfunded social services. I want to be able to choose whether I wish to continue with this life or not. On my own terms. Keep up the campaigning!

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  5. Well said Rachel and I'm completely with you. I've got as far as talking with close family and friends (fortunately, we are all like-minded). In the UK 'Compassion in Dying' compassionindying.org.uk provide excellent information about power of attorneys and advance decisions. So that's sorted.
    Taking the idea of a 'good death' even further their sister charity dignityindying.org.uk campaign for the right of people to die sooner (with help) rather than suffer longer.
    I appreciate it's a minefield for medics and can understand Prof G's viewpoint. As to the answer? I don't know. I guess we can only speak for ourselves and quietly respect the personal decisions of others.



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  6. Where is the Patient confidentiality?

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    Replies
    1. Her exhusband wrote a play about her. It could all be made up, but who am I to know

      Delete
  7. I totally agree Rachel, and also with the comments of Annonie, Laura, Sarah & Anonymous. I don't think it's beyond us as a society to be able to protect the very vulnerable, while allowing those who wish to die, when they're ready, to do so. For myself, I value quality of life above quantity & see no point in prolonging my life just because it is possible. I appreciate that my interpretation of the level of QoL I am prepared to accept may shift as my disease progresses & I adapt to it, but again, I don't think it is beyond us to develop a flexible approach to this that allows for a change of mind & continues to protect the vulnerable.

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  8. One of the best post on Barts blog

    Totally agree with you

    1º You have ms (you know what is like)

    2º No COI (there is no money to be made in death patients)

    Thats why some Neuro dont aprove it

    Thanks for posting

    Obrigado

    Luis

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  9. Totally agree!
    I can only speak for germany but here the government prevents assisted suicide since ever.
    In my opinion this is against "human dignity" as stated in article 1 of the german consitution " Human dignity shall be inviolable. To respect and protect it shall be the duty of all state authority."

    There is also a religious and economic view on this issue. And both are disgusting to the core. I wont got deeper into the religious arument as it would take to much space in here but the economic one is as reprehesible. If you keep a person alive you ensure the flow of currency which keeps a economy alive. And I don't talk about pharmaceutical companies but mainly for the social industry which will happily make you suffer to stay alive.

    Think of alle the caretakers, psyholgist, neurologists and others who receive money, appreciation and admiration from your suffering.
    Viva collectivism! Reject individual diginity!

    D-I-S-G-U-S-T-I-N-G

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  10. Healthy doctors opinions on what sick patients should do with their lives is like men opinions on feminism: You can have one, but noone really cares.

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  11. I think if you've been leading an emotionally hollow life filled with crippling anxiety about progression but everyone tells you you're "fine" you should be able to push the button but I know few would agree with me. . .

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  12. I make a distinction between suicide and controlled death.

    I have a very close friend whose son committed suicide because of the demons in his head (as a young teenager, he was raped and sexually abused by a "pillar of the community"). Despite all the love in the world from his mum, brother and wider family and friends, his pain was so great that he could only find peace in a bottle of pills. Her son's death ripped the heart out of my friend, so I have witnessed first hand the absolute devastation that suicide can cause.

    In my opinion, choosing to end one's life with the assistance of physicians is not suicide; it is merely choosing to bring forward one's own expiry date. I have had many long talks with my husband, parents, siblings and close friends about this subject, so there is no doubt as to my wishes, if/when I reach the limit of my tolerance. Thankfully, they're all of a similar opinion.

    As a society, we are extremely arrogant about the "sanctity" of human life (well, First World human life anyway!), so various lofty people (both secular and religious) believe that they know best and we mere mortals have neither the intelligence or moral maturity to exercise our right to self-determination. As a libertarian, I've always been pro-choice; and I think it is obscene that people with no understanding of the lives of others, should have the power to block those people's rights to life or death.

    Ever since I was old enough to think about life, the universe and everything else, I've had extremely strong feelings about what I consider to be a life worth living and, for me, there is a huge distinction between living and merely existing. Inflating and deflating my lungs and having a heart that continues to beat is not the definition of life for me.

    Obviously there is a very real concern that some vulnerable people will be coerced into ending their lives and there absolutely should be a process to screen for that, but that alone is no reason to prevent non-vulnerable people with sound minds from choosing to escape their own personal hell. By not allowing physicians to assist their patients to have good deaths, moral crusaders subject ill and/or disabled people to absolutely awful final months and years. For someone who has no physical ability to end their life, they are reliant on their loved-ones to help them, which in addition to the terrible emotional and ethical burden, also incudes the fear of prosecution (CPS "advice" and precedent notwithstanding). Added to this is the distress of choosing HOW to end one's life. I certainly do not want to take the wrong dose of something which fails to kill me, but causes me agony and immense distress, not to mention what that would do to my loved-ones and the probable burden on the first responders.

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  13. Here in the U.S., there are some states that have legalized physician-assisted suicide. However, to qualify, you must be within 6 months of death. I have no quality of life and am in bed due to disability and excruciating pain from MS, severe bowel issues and numerous herniated discs. I probably have years left before a natural death occurs. My doctor says I have depression and probably would not assist me, anyway. But, I am pretty sure that if I was healthy, I would be very happy and in love with life. Why not let the patient decide? Most of us are in control of or faculties and know when to say enough is enough.

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