Dignity in Dying

I recently rejoined this charirty which campaigns for a change in UK law to allow assisted dying. I was prompted by wanting to support Debbie Purdy who has progressive MS. She is challenging the Director of Public Prosecutions to issue a statement about his policy towards people who accompany a loved one overseas to die. At present the only countries in the world to allow assited dying/assisted suicide are Belgium, Holland, Switzerland and the US state of Oregan. In Europe Holland and Belgium do not allow foreign nationals to use this law and so terminally ill UK citizens who wish to die at a time of their choosing have to travel to Switzerland and then anyone who accompanies them faces the risk of questioing and possible prosecution when they return to the UK. Purdy seeks a clarification in the law.

I have also recently read a really good book by Mary Warnock and Elizabeth MacDonald called Easeful Death and its provides a compelling argument for a change in the law here.

I have supported a change in the law for many years. Now my cancer is terminal I feel even more strongly. I dread, not dying, but dying after a long drawn out final illness and want the right to be helped to end my life at a time of my choosing. I find this subject strangely missing from discussion about living with advanced breast cancer…feel hesitant about raising it…as though somehow ‘letting the side down.’

I know some people have strong religious and moral objections on this issue…indeed it is the intervention of the Church of England in the Lords which stopped recent attempts to change the law. There is now sufficient evidence from the expeience of Oregan(10 years) that liberal legislation on assisted dying does not lead to a ‘sliippery slope’ and one of the benefits of a change in the law is actually improvements in palliative care.

I wonder if there are other people with breast cancer who feel equally strongly. I’d like to do some serious campaigning with Dignity in Dying, and at a personal level, nothing would lessen my distress more about the thought of what is to come than the knowledge that I could choose to die in dignity at time of my choosing…which could be earlier than a ‘natural’ death. I know that the exisiting law may enable pain controlwhich will make my last days ‘comfortable’ and ‘peaceful’ but what about those of us who don’t want the last weeks or the last few months thanks? I know the disability movement in general is heavily split on this issue and I suspect the cancer community is too.

I recently heard the beautiful story of friend of a friend in Holland with advanced cancer who had a big party the night before she used the law to die. What a way to go.

And finally in the words of John Keats:

Ode to a Nightingale

Darkling I listen; and, for many a time
I have been half in love with easeful death,
Called him soft names in many a mused rhyme,
To take into the air my quiet breath;
Now more than ever seems it rich to die,
To cease upon the midnight with no pain.

Jane

Jane,all that matters is you and what you want,you will not be letting the side down,for how can anyone begin to imagine each individuals situation and feelings regarding facing a terminal prognosis.I so wish things were different for you,your final words by John Keats I confess brought a tear to my eye as the reality of your situation hit home,thinking of you and wish you well in your campaign Doolally…x

We have an MSP up here in the Scottish Parliament, Margo MacDonald; she is a very formidable and strong woman. She started campaigning for a change in the law because she has Parkinson’s Disease and she feels that if she goes on to develop the worst form she should be allowed to die with dignity. She did a documentary on BBC Scotland last week about this issue. Margo is also a tireless supporter of better BC services and she supports the Scottish Breast Cancer Campaign which I joined recently and hope to get a bit more involved with when I get more time.

I watched my father die from dementia - during the last 7 days of his life he refused all food and drink and there is no doubt he wanted to go. The last year of his life was a living hell and during the last 2 days he was fitting twice an hour due to electrical impulses to the brain. My late mum believed in euthanasia over 30 years ago because she believed people should no have to die in fear and great pain. I am sure there are many others who feel like you Jane and I am not at all offended by you discussing it because the only thing certain in our lives is death.

I agree - I don’t fear death (tho I am not looking forward to it) - just pain and helplessness.

I read somewhere recently that there is going to be more effort to send dying patients home - would be good if enough assistance I suppose?

My Dad died at home from cancer - he & my Mum were GPs and I have long susspected that they had enough morphine stashed to ‘help’ him. I am sure other GPs ‘help’ patients in this way unofficially but a Holland type solution seems logical to me. I’m afraid I dislike all Religions and see them as divisive in most instances even anachronistic - but I consider myself moral and Humanitarian and support the idea of Dygnity in Dying.

Jo

We artificially prolong life by treating illnes and the symptoms of illness, so therefore, we should be allowed to artificially end life when symptoms become uncontrollable.

Good luck in your campaign, people power is underestimated.

J.

Long before my dx in 05 I had researched the Euthenasia Society. I fully support any endeavours to encourage euthenasia. Many the time it’s been said that animals wouldn’t be kept alive to suffer what humans have to suffer. All in the name of, what, God?? Don’t make me laugh.

Jane, and anyone else who wants to pursue Dignity in Dying, just carry right on and I’m behind you 100%. I’m a follower, not a leader, but if there’s anything I can do to help, just let me know.

Good luck to us all.
xx

Well done Jane for bringing up this subject - not something everyone wants to talk about, but talk about it we must. I never discussed the subject of dying until my dx with BC which brought the subject head on. Family wanted to shy away from the subject whenever I mentioned it - I really wanted to talk about it and get it out in the open and didn’t find their attitude very helpful. What is the point of shoving it under the carpet - surely life/death go hand in hand. After all, it will happen to each of us at some point surely as night follows day. Although I am a Roman Catholic, I totally support the argument for euthenasia - it should be the person’s choice whether they want to go down this route and if they feel it will leave them with the dignity they want in death, then surely they should be allowed to have their last wish.

Hi Jane, all - so glad you raised this. It must, absolutely must, be discussed. Our own deaths have not been prevented, merely postponed. But it is a thorny issue.

Some thoughts: I don’t think there has been an actual prosecution of anyone who has accompanied a loved one to Switz; I believe (can’t cite cases - research needed) that there have been charges brought against individuals helping people to die here, but I also vaguely think that they got off in the sense of not going to prison; however no-one should have to fear prosecution for an act of compassion.

I believe doctors have been prosecuted for assisting death - doctors are in a particularly difficult position; after Annie Lindsell brought attention to her plight in 1997 (motor neurone disease) there was a ruling, supposedly, that it was legal for doctors to use enough morphine to make the person comfortable even if it hastened death; however, I am not certain how clear that message is because for all I know there have been subsequent cases of the same kind, where you would suppose they didn’t need to be if this ruling had force. Perhaps there are difficulties establishing exactly what occurred in particular cases.

Hence I think, I fear, doctors are nervous about end of life, and that makes me fear that people may have to suffer because doctors are afraid of the law. I fear that raising the profile of these issues may have made matters worse for us in this regard - where once they may have been able quietly to help us die, now they fear that they will be charged, and prosecuted. Different cases have had different outcomes, as well, I think. So the situation absolutely must now be clarified.

Another thing that worries me is that, since doctors have the wherewithal to help themselves and their families, they are all right jack, so to speak; so they feel secure in the knowledge that they themselves will not suffer. So they forget that the vast majority of us are not in that fortunate position. I have thought of getting hold of some heroin when the time comes - know nothing about these things, but how hard can it be? - problem is, I do not wish to break the law, nor to encourage dealers - bet that bit will be censored.

I got a Living Will from Dignity in Dying - essentially declining treatment other than palliative when I reach that stage of moribundity such that what I call a tolerable life is over and I could head towards my grave if they leave me alone but would have to hang on if they use technology. I had difficulty getting friends to sign as witnesses because they morally judged me - they had the impression that I might be preparing to desert my children when, as I see it, I was trying to spare my family the agony of my excessively and artificially prolonged dying, and of having to carry a passenger when I am past my ‘best before’ date, which I would like to choose. My doctor accepted the will reluctantly, but brushed it off with unconvincing reassurances about my ending and what can be done - it is said, and I do not have personal experience of this, that the best palliative care is not adequate for some people who still live in agony before death delivers them. The rules have changed since I did this, and I haven’t got round to checking out if mine still stands or if I should change it.

My big reservation is that I do not want another person to be involved in my death - although I heard on the radio an account of a mother who sat beside her son who took a large dose of illegal heroin to end his life (can’t remember what he had but it was terminal and horrid) and I would have done that. She also said how peacefully he died. Bet that will be censored too. Wonder if there is a forum on which we can discuss this - maybe Dignity in Dying have one.

I am in total agreement with you Jane. What has always made me cross is if an animal is in pain, the vet will put him to sleep to end his misery and suffering, but human beings are expected to soldier on till the end, no matter how distressing the end is.

Good luck with your campaign.

Jules x

This is some subject, which a lot has been written and discussed about for many years. I think a lot of people have made a comparison to the abortion issue and how that in many peoples eyes has been abused. Will this be abused if legalised?

Jules are we animals? I dont think we are, we can speak we can have an opinion and be heard and consulted as to what we want.
I believe God made us and he ultimately decides when we leave this earth but i wouldnt say No to a few drugs to help me on my way. He has made the drugs so i have no problem in that.

My mum had secondaries at Dx but lived for 6 yrs. When she was told there was no more treatment she was relieved. I am thankful for the hospice she died in as i know if she had been in the teaching hosp they would have tried to keep her alive as they had done for the month before, diamorph assisted in her death.
My other friend died last year, i strongly believe taxotere killed her quickly as she should never have had it she was too weak with extensive liver spread… She said to me when i got her admitted to hosp, ‘wouldnt you think they could give me something to finish me off’
Having been a nurse and unfortunately in my life had the experience of being with family and friends nearing death i do not feel that the medics can force us to have treatment and we do receive assistance in dying. I would not want though to be able to ask for an injection to end it all.

Can I ask Jane, at what exact time is she going to ask to die? Does she see it as being wrong of the people on the secondary forum battling to stay here as long as possible?.

I am very confused over this issue.
I have known people at Dx with secondaries to refuse treatment and probably die a lot quicker than they would have done. Haven’t we all got a choice?

I know i am missing the main point in this and thats an injection to make us die but my question is AT WHAT TIME?

Some on here have just said ‘I agree with jane’ which is fine but have they read and thought deeply about this, its a mega mega issue.

I am just glad i have a faith and believe in eternity and can let God be in control and hope he gives me the strangth and courage when i need it as i aint one bit brave.

Nice we can share here and thanks Jane for bringing this up, sometimes we avoid death and how we will deal with it.

Rx

Liverbird, how do you come to terms with God deciding that children are left without mummy and the heartache of those He chooses must leave them. If He is responsible for making the drugs why doesn’t He make them a bit better? In fact why doesn’t He shortcut drugs and just make sure that we don’t get cancer?

I am 100% in support of freedom of choice of the individual, very very strongly and as such have felt that we all should have a right to choose how and when we end our lives. We can for our pets and it’s disturbing to me that we can’t offer the same compasion to our loved ones.

I do appreciate that the idea is offensive to some people’s ethical, moral and religious points of view and as such some do feel the right to deny that freedom to others and everyone is of course entitled to their own opinion but one persons opinion should not be able to dictate something as huge as quality of life for another person against their wishes, eg my religious beliefs should not be able to dictate that another dies in suffering.

Sorry if this is strongly put but we are much more than jut animals and we deserve at *least* as much freedom of choice for ourselves as we have four our pets etc.

Vertangie I agree, that is the point that I was trying to get across. Yes we are more than animals, we are human beings with feelings, thoughts etc. and we should have as MUCH freedom of choice, if not more, as we have for our pets, not what we have now which is less.

It is a choice, so why is it wrong to watch an animal suffer so is put to sleep to ends its torment, but its totally ACCEPTABLE to watch a human being suffer against there wishes, its inhumane.

Dear Rx, no one has just said,…I agree with Jane…people have given reasons and comments for their particular stance and I am sure people have posted with a great deal of thought and deeply too,to suggest that people havent is I feel is a little condescending.As regards one particular point you made
quote…Does she see it as being wrong of the people on the secondary forum battling to stay here as long as possible?
…I am sure Jane will answer for herself,but Jane posted about her own personal thoughts and feelings ,and of her way of looking to the time ahead and how she would wish to deal with her own personal situation and hasn’t suggested that this be a way for anyone else just as an option for herself ,I dont think for one moment anyone would comment on anyones decision facing their death unless brought up here as a question,for they are all individual and seen with the respect and admiration they each merit I found this statement somewhat alarming.Sorry Rx ,It has taken a lot for me to say this ,but I just had to express my feelings on those particular points you made,Doolallyxx

I’m still reeling from the revelation that God makes drugs. Personally I’d always thought it was companies like Roche and Burroughs Wellcome who rake in the profits.

Good luck JaneRA, I fully support the aims of Dignity in Dying, and if you need petitions signed etc then get in touch.

L x

I am sorry longden if i upset you but what i am asking is when do you decide to ask to die?
I did know when i posted what i did that it would upset some people regarding God as some are non believing.
I thought very very deeply about what i wrote and its something i come too from vast experience of being with dying patients and family and friends. It was not meant to upset anyone AT ALL. Sometimes i feel people don’t like the mention of faith God or an after life on here but we are all entitled to our views and that for me is a big part of my life and my belief on an after life.

God gives men the capbilites to advance in science etc there is no need to be sarcastic L.

Again we are all entitled to our point of view and apologies if it isnt the same as everyone elses but i have to be true to myself.

Life is more interesting if we disagree ‘nicely’

Rx

i hope that when my time comes ,i can go with dignity ,and free from pain ,as some of you know .i lost my sister and a brother in law on the same day in march this year …one died at home with his family and my dear sister in a hospice ,both went peacefully ,with help from morphine drives ,i know they bump up the dosage near the end ,its never nice to watch someone you love die is it ,my own poor mothe rwho died when i was very young died in agony ,drugs have come a long way since then .i really think its an indevidual choice as how to die ,i myself want to go without suffering if possible ,bad enough to be in pain everyday now .it all boils down to choice . makes you think though dosnt it ,given the choice i know what id do .lynn x

I know Rx,Life is more interesting if we disagree nicely,Im glad you see it that way,guess im just feeling a bit protective of Jane,which she would no doubt scold me for but still,like you said thank God(yes i do believe in God,in a non religious way but in a personal spiritual way if that makes sense,sorry rambling now)…we can all agree to disagree ,take care and best wishes…Doolally.

But Ruth you can do both…you can continue all available treatments to stay alive while your quality of life is good and some of us with secondaries will want to continue treatment when our quality of life is not good at all. I’ve been living well with mets since 2003 and I’m hoping this will continue for a long while. I love my family, I love life and I’m pain free but I also agree with Jane when my situation changes I do not want a prolonged and painful death. I was with my Mum when she died, April this year, I have no religious beliefs, faith, whatsover but was comforted to some degree that most of the time my Mum was dying she was relatively peaceful and it was a quick death.

Here is my story.I joined the Voluntary Euthanasia Society many years ago and lodged a ‘Living Will’ with my GP.When I was dx with this filthy thing I reminded my daughter of this and she was distraught and begged me to tell the doctor I wanted to retract it.Because I was causing so much pain I did this and she came with me to the doctor.I support anyone’s right to make this decision but for me I felt it would be the last thing I could do for the family if they knew I had stayed as long as possible.I have given my daughter a witnessed letter saying that if I am suffering and there is a way to ease my passing then that is what I want,it is up to her to use it.It would be a very brave person who could accompany a loved one to Switzerland and return alone and a very unusual person who could ask it of someone they love.We ought to have the choice here I think.The poem Jane quotes talks about,‘where youth grows pale and spectre thin and dies’.Keats wasnt talking about suicide but his despair at the premature death of his younger brother and his certainty that TB would claim him too [as it did when he was only 25].I’m not sure what I’m saying really except that I think we should have the right to choose but should take responsibility for the effects of our choices on those who have to live with them.Vx