Has Parkinsons UK got an official view on voluntary euthanasia during the terminal stages of the condition? Its surprising just how many countries have provision for their own citizens in certain circumstances. Bearing in mind the accute distress suffered by certain sufferers as documented on the forum perhaps its a topic that should be actively addressed and more widely discussed by the membership
Thank you for bringing this subject up in the forum, it is high time it was discussed here. Let me make it clear that I am 100% in favour of Euthanasia, having said where I stand I don’t give much for your chances of getting even a reasonable debate going.
In my humble opinion there are far to many PD sufferers who won’t even admit to having PD, the general public still do not understand the full implications of living with the disease. To give a couple of personal events I’ve been laughed at because of my speech. and I was at a dear friends funeral the wake being held in a pub I walked from one room to another to get a sandwich on passing a chap he remarked here’s someone who started early inferring that because my balance was shot that I was drunk. Now to the thorny question of how can I be sure my wishes will be carried out firstly I have donated my brain to Parkinson’s brain bank then I have given my daughter Lasting power of attorney both physical and financial also I have made my will, so I am as sure as I possibly can be that my wishes will be carried out and that i am not being pushed down the path of euthanasia may be in the fortunate position of being able to trust my daughter implicit ally, but there are other ways such as solicitors , family doctor priest and other people who could help’ so I say come on people discuss this and shout parkinson from the roof tops, more talk = more understanding = more funding = more research= more hope for the future. on a very personal level, when I am unable to sort out my own bodily functions then it is time I wasn’t here.
When my Husband was first diagnosed with PD during a discussion of how he may progress, he said that he would not want to carry on living when his PD got really bad. This is a view he still holds after several years of his diagnosis. He said straight away that he would travel abroad,whilst he was still able to travel, to end his life. He has a LPA and his will drawn up with his wishes in there…his attitude is that if an animal was suffering we wouldn’t hesitate to stop it’s suffering so why should he be expected to “live” with no quality to his life? I think that a proper debate and discussions should take place to discuss voluntary euthanasia…Families especially spouses are left in a no win situation as the law stands…I don’t want to see my Husband suffering when his life gets to that point but don’t feel that I would want to him going abroad to end his life…but it would be too heartbreaking for me and our Family to stand by and watch his suffering…it’s a no win situation for any of us…so I thoroughly support more debate on this very painful subject…
I would totally agree that this is a debate that is sadly lacking for people with Parkinson’s and is probably true of other medical conditions too.
I am not totally up to date but I know that some efforts have been made to address the whole issue of dying with dignity, assisted dying etc as in this example:
However there is one crucial point that I think makes efforts like this meaningless to those of us with Parkinson’s and that is the parameters are always about those considered terminally ill.
Advanced stage Parkinson’s may be unbearable to an individual but I doubt he or she would be considered terminally ill by the general understanding of the term, since Parkinson’s is not on the whole considered a life shortening condition. To include Parkinson’s would, in my view create a whole new set of issues culminating in where do we draw the line?
Again in my opinion there are two other factors that are likely to mean any debate might well take a long time to get off the starting blocks they are
Generally most people are not comfortable talking about death and dying even though it comes to us all and
We know that Parkinson’s is not well understood and unless and until that changes, I think itwould be next to impossible to get it seen as a ‘terminally ill equivalent’
I am not naturally pessimistic, but unless something happens of earth shattering proportions I can’t see much change happening for a very long time,
I was in favour of voluntary euthanesia until very recently. What has changed my mind is the slippery slope effect, apparent in Canada and Belgiunm which has resulted in ‘voluntary’ euthanesia for the mentally ill, children and elderly people who cannot afford the care they need.
You are quite right to raise concerns such as this, which ties in with my comment about where do we draw the line. I have also heard of people in terrible torment and wanting to die but that episode passes and the wish to die weakens. However we are not good at discussing death and dyiing or seeing it as part and parcel of life, having a proper debate may help create a healthier attitude to a subject so many find difficult.
Sorry This is precisely the sort of ill defined comment /vague assertion that serves to confuse the issue-- where is the written evidence that backs up your assertion? ??? And we are not talking about the mentally ill, children and elderly people who cannot afford the care they need, we are talking about people suffering in the final stages of Parkinsons disease. Where you are correct is that its a contentious issue rife with lots of false information, but with proper safeguards and well defined legislation I don’t see a problem. In a free society we don’t impose on others how to live-why should we impose on them how they chose to die while they are still of sound mind?
While I don’t disagree with you Grober and I accept the debate you are wanting is about end stage Parkinson’s and the right to choose how you die, this cannot be seen in isolation. It is a very emotive subject with strong opinions on both sides. You are, of course right, decisions need to be made on hard evidence but people form their own personal views from many sources. Their views may not be backed by the written evidence you want to see and you may feel that unsubstantiated views confuses the issue and serves no purpose in your wish for proper debate, but they are entitled to those views wherever they are from and it’s not for anyone else to suggest they are not valid or serve no purpose. Maybe rather than look at the bald comment made and see it as in effect worthless, you might instead take such comments and do some research to find out if there is any supporting evidence. You could then bring your findings to the forum as a considered response and that may or could contribute to your wish to get a full discussion going.
I’m sorry if you think I was being vague. I suggest you read this article on Canada: Most-read 2022: Why is Canada euthanising the poor? | The Spectator.
Belgium legalised euthanasia for minors in 2014. There is no lower age limit. the implications of that trouble me.
I agree with you 100% Grober.
Why should anyone have to continue living in extreme pain and has been for some time, simply because someone else feels they “should”.
And here I can already hear the screams of disgust and spittle flowing at my next statement.
Those who loudly scream and shout that you should not be able to take your life because it is “Gods” choice to decide when to end it, is asinine in the extreme.
If one of my relatives is suffering in extreme pain with no prognosis of it getting any better, if asked I would certainly help them to acquire peace.
I carry a DNR ( Do Not Resuscitate) card with me. I am not prepared to being kept alive on machines.
People do not seem to realize that not only is it the person going through the extreme pain and misery, it basically destroys their whole family.
Of course there are exceptions in every situation, and you would have to ensure that, that is really what the persons wishes over a time period of talking to them and their loved ones.
Oh, and before you ask, I used to consult on suicides anonymous and life line, and in the vast majority of cases, approximately 97%, you can talk them “out of it”
Most times people just want to have someone listening to them and what they are going through.
The times when we got most calls was over Christmas/New Year and Easter.
Hi everyone, ,
Thank you all for sharing your thoughts on this very sensitive topic.
We believe that people with Parkinson’s, their carers and families should be able to exercise their right to access effective health and social care services at every stage of the condition, including at the end of life.
This should always involve timely provision of good quality information so people know what support is available at every stage and how they can get it.
We neither support nor oppose a change in the law to allow assisted suicide. Our position is neutral because we recognise that people with Parkinson’s have a wide range of personal beliefs on this issue.
For more information on our policy regarding end of life and assisted suicide, please visit our website, ou can also download our full policy statement via this link: (End of life and assisted suicide | Parkinson's UK.
Assisted suicide is only for those who have mental capacity and are in a position to travel. Better by far to make an advanced care plan and have POA in place so no unnecessary medical intervention can be made. Also bear in mind that quality of life for those in complex phase can be very variable and mental capacity will most likely be seriously compromised. This is a complex situation for which there is no easy solution
This organisation is actively campaigning at the moment in the uk x
That’s great to hear.
Hi i have had pd for 20yrs 10yrs dbs I’m 52 i agree with you . You don’t let your pet suffer so why have we. But i have one question say you have private pension & life insurance would they pay out.
As someone newly diagnosed suffering mental health issues related to anxiety, but as yet still totally capable physically - no balance issues, no speech issues, very little difficulty in performing intricate tasks with my hands - talk of euthenasia and life reaching the point where it is not worth living is not something I feel ready to contemplate. I kind of hope that being 58 now, something age related will kill me before life becomes intolerable.
All that I will say is that if I ever get so bad that I dont want to live anymore, I would want to be allowed to die peacefully. But it needs to be my choice. Beyond that I am not yet ready to get my head around how bad it might get yet. Am not ready to look in detail at the end stage symptoms
Welcome to the Parkinson’s UK forum.
We have a supportive and friendly community here so I’m sure our members will be quick to welcome you too. Being newly diagnosed with Parkinson’s can be really tough and it affects everyone in different ways, this includes a range of mental health issues. As well as the support you can find here, we have a lot of information on mental health along with tips on how to manage it via our website which can be found here: Parkinson's and mental health | Parkinson's UK
On the topic of euthanasia, we appreciate that this is a very sensitive topic and I have shared our views on this on this thread: Voluntary euthanasia - #11 by Reah
If you need any further support or information on this topic, please do not hesitate to contact our helpline team on 0808 800 0303.
First of all I want to welcome you to the forum. I read your introductory post and I have to say it made me smile when you apologised for being verbose. I have long had a love of words and even a cursory look at some of my posts will show you they are often quite lengthy. I don’t set out to write so much they just seem to grow. I would just say to you don’t feel you need to apologise, it is your forum too and you are free to write whatever you want the same as anyone else. People will either read the whole thing, skim read it or stop and move on if it doesn’t hold their interest. I never cease to be amazed at how many read my longer replies to the end and then go to the trouble of commenting. So carry on posting in whatever way suits you best.
I am writing my main reply however to the post you put on the voluntary euthansia thread, in particular where you wrote (quote) ‘…am not yet ready to get my head around how bad it might get yet. Am not ready to look in detail at the end stage symptoms’
When you are newly diagnosed it can be a very strange and confusing time and for many not a little bit scary too. Things do settle down but given what you’ve written I thought it worth mentioning at this early stage for you something I have written many times on the forum ie there is no right or wrong way to living with Parkinson’s, only the way that is right for you. In most people progression of the condition is slow and you have time to adapt and adjust. There is no reason at all why you should be thinking end stage at the moment, and maybe you never will if that is what your way turns out to be. The trick, skill or art of living with Parkinson’s in my opinion is actually very simple - do what feels right for you, be true to yourself and you won’t go far wrong. It is simple but not always easy to work out when trying to come to terms with this new world that often turns everything on its head. The key for me, and again this turns up in so many of my posts because it is so important to how I manage my own Parkinson’s and that is to keep positive and I work hard to maintain that even when Parkinson’s throws in a curved ball or two. So carry on reading the posts on the forum if you wish, but remember they cover a huge range of subjects and questions and it may be worth being a bit selective at this stage to posts that may help you find your Parkinson’s feet. You wrote you are not ready to look at how bad things might get etc, that is actually true in my opinion, of living with Parkinson’s in general. You will find a lot of things can be quite testing - when and how do you tell people? Some can’t even bring themselves to say the word Parkinson’s let alone see it in relation to themselves. Should you start meds or delay? What happens next? etc etc. Any and all questions can only really be addressed when you are ready to face them - and that time will come but it may take longer than you think.
I wish you well as you navigate these early days.