Exactly right, Jane - both good end of life care AND the possibility to stop when you have had enough could and should co-exist without a problem.
The debate is always framed in a way that assumes that good end of life care replaces any need for choice at the end of life, so there's no need to address the problem of those for whom lack of pain is only one consideration in a good death.
The good end of life care is very far from widely available - I'm certainly not confident I would find it if I needed it - and the impression given by opponents that there will be a flood of assisted suicides for "trivial" causes, or pressure on the old or ill to submit to assisted suicide when they are not yet ready to - that is just not happening where it's available.
More people hang on to life to the last than wish to end it at a time of their own choosing - and both options should be open. And never do those promoting end of life care seem to get the mental distress at the loss of your self, the exhaustion of constant coping with illness and treatment just to hold back the unstoppable - only "unbearable physical pain".
I've probably said it before, but I do recommend Bert Keizer's book "Dancing with Mister D." - I lent my copy to someone and it never came home, sadly.
I think you've put your finger on a key thing in this debate...the notion that suffering is somehow a gift. Even if we are not religious I think this notion is deeply embedded in Christian tradition and internalised by many people and is hard to shake off..enduring treatment, being 'brave' are all expectations of the cancer community.
I am a member of Dignity in Dying and the latest newsletter is full of useful information including: a review of Commons debate in November; information about Early Day Motion 230; article by Esther Rantzen;report on media coverage recenttly; and a review of a book called Is there a Christian Case for Assisted Dying by Paul Badham...essential reading for Christians...leadership of the Church opposed to change in law but many ordinary churchgoers in favour.
Dignity in Dying campaigns both for a change in law on assisted dying and for improvements in end of life care generally. The experience of the state of Oregon shows that both are possible..one does not exclude the other.
I have the programme on the laptop and I'm working up the nerve to watch it, as I know it's going to be emotional - just the trailer gave me a lump in the throat.
Unfortunately, I think however powerful the drama or the support of patients, there are entrenched positions which aren't open to reasoned argument. I've lost count of how often I've heard the opinion that assisted dying is unnecessary because good palliative care gives pain control. It might (though I'm not that convinced) - but that doesn't address the mental distress that some people will feel at the loss of dignity and self. When you have to have someone wipe your bum, feed you, catheterise you - I want to go before then, even if I'm not in physical pain. And I find it hard to take that people need to consider assisted suicide before they're fully ready to go, in order to be physically able to travel to do it. That really does seem obscene. (Though not as obscene as religious groups who commend accepting suffering as a gift.)
I think there's a difference between thinking we might or might not want to use a law on assisted dying ourselves and supporting a change in the law in the UK to enable those who might want to use such a law to have that right. I want the law changed though I know in the end I might not use it.
There is such nonsense talked in general in the west these days about individual 'choice'... look at breast cancer...talk of choices about reconstruction, about treatments, about wearing a wig or not, about diet, about alternative medicines...and we all churn out words of 'respect' even though those choices are so socially bound and constricted.
Yet the one fundamental thing we do alone...dying...we don't really get choice when we have a terminal illness...unless we want to risk dodgy self inflicted methods. I know death too has its elements of social constructioon..well certainly the palliative care movement's talk of a 'good death' is but one example...but actually you don't get more alone than in dying. At least when you're born you've got your mum...
Jane, I've also known women on here die incredibly quickly too. I suppose to some degree that's where my anxiety lies.
I didn't know I was capable of going through the 'suffering' I've already done - did any of us here?
Of course everything should be up for discussion. I just have a feeling (no more) that we will know when it's 'enough' and we will know when it's 'our time'. I watched the programme from the part when she said she thought it was time now. I hope that that's the case.
I'm not sure either that I want to be videod dying - but I daresay at the time that's the least of it
I watched this early the next day because I could not sleep due to the pain of post radiotherapy problems. I think it was an exempilary piece of drama that will probably not get the recognition it deserves. My only concern is that it may not have the impact that it intended - I had always been very pro this type of action - advocating that we are kinder to our animals that we are to ourselves and I thought the programme would just reinforce that belief. However having watched this programme I am now not so sure that it is a route I support. I do not know that I could put my sons and partner through that experience. I am firmly in agreement that we should have choice but I don't think its one I would now make. What I would like to see is a brilliant level of palliative care available to all so that any departure is as comfortable as possible in the environment that we feel most at ease with. It is not an easy decision and a very personal one and every one is entitled to their own view - which is why choice is the vital thing that should come out of this
I thought this was a really moving drama and I too sat in tears through it.
I care passionately about the right to assisted dying and think the law in the UK should be changed. If you think so too then write to your MP and ask him/her to sign Early Day Motion (EDM) number 230 which will allow a discussion on assisted suicide...this will be possible because Parliament is debating a new Coroners and Justice Bill which will modernise the 19761 Suicide Act. If you want to see an example of an appropriate letter go to http://www.dignityindying.org.uk for ideas on what to write.
In the drama Julie Walters (playing Anne Turner) said that when there is a liberal law then terminally ill people feel comforted by just knowing it is there, even though many choose not to use it. How right she is(was).
As far as terminal breast cancer is concerned my hospice nurse also tells me that most people with advanced breats cancer die quickly. This offers me little personal comfort because quite bluntly I have raed the details of many people dying on these forums, drawn out over months and weeks of suffering which personally i would find intolerable. (My tolerance level of suffering might not be yours but I'm not talking about you..I'm talking about me) I would like the option of 'ceasing upon the midnight with no pain' even if that means going a fedw days, a few weeks, a few months earlier.
By and large it is organised religious groups and powerful radical disability groups which obstruct proposed changes in the law. I think there are cohenret arguments to be made to both these opponents and they should be squarely opposed. The expereince of those countries which have introduced assisted suicide (e.g. US state of Oregon) is that, contrary ot the fears of opponents, liberal law in this area does not lead to 'slippery slopes' or people being forced into suicide...quite the reverse in fact.
It is tragic that people in the UK have to go to Switzerland if they want an assisted suicide. That takes courage which I do not have.
I only saw the last half of this. Even tho I have secondaries I never think of this as an option for me, as my BCN told me that death tends to come quite quickly when one has breast cancer. I'm actually really pleased she told me that, because at least I havn't had this particular nightmare.
Several things struck me, one of those was why on earth does the last taste you have, have to be bitter. Why can't they change the taste of those drugs. I was amazed that it acted so very quickly, I had absolutely no idea that this would be the case.
Overall my main one worry is one of pressure. Pressure from relatives or friends. Pressure to carry out this option so as not to be a burden. That's the major part I find worrying, because after all that would be the ultimate abuse, if not murder. I also believe in a similar clinic in Sweden a woman with no physical health issues but long term mental health issues was helped to die.
It's certainly a difficult one and I would not wish to suffer for years with this kind of illness. I think having to travel to Switzerland might be a test of desperation. After all most of us would want to die comfortably probably in our own beds surrounded by loved ones.
I watched it, for a while but both me and my OH began crying so switched over. I personally know this would not be my choice, as I feel there is a possiblity to have a reasonable quality of life fairly close to the end, and I want to die where I am comfortable.
If I suffered a degenerative illness, like this lady and a previous program I watched where a real trip to Switzerland was filmed, I may consider it.
I don't think it is wrong or right, simply a choice that should be open to us all who are in facing a terminal disease with no hope of a cure and an end that can be lingering. I do believe it should be able to be carried out in the UK, under strict circumstances.
I have dogs, and the last gift I have given some of them in the past has been to hold them in my arms, in surroundings they know and feel comfortable in, and give them all my love right to absolute end. The last one I had to do this with, despite it all, wagged his tail one last time. He knew I did it for him, even though it broke my heart and he forgave me.
Shame we can't do the same for ourselves if it how we want to end things.
I watched this programme - what I could see of it through a haze of tears. So terribly sad for two such brilliant minds (her husband previously) - both doctors - excellent givers to society - to finish their lives at the hands of such a terrible illness. I agree totally with her choice, the only thing that maddens me with this whole issue is the fact that anybody wishing to end their life has to travel to Switzerland to die in a cold, impersonal room that has no reference to their own life and home comforts. How much nicer for that individual to end their days in the familiar surroundings of their own home, with whoever they want there and their own GP that knows them personally. Disgusting that this is not available here. I thought we were a civilised country that once led the world! x Jacq x
Thank you for all your thoughts so far.
Soprano....I agree choice would be a good thing.
Belinda......I am so pleased you are doing well, and hope you continue to do so, I think your post reflects my thoughts exactly....you do have to be very couragous to make that decision and to see it through.
Jennywren.......Yes '' Good Death'' is an important phrase....I agree, the programme was dealt with sympahatically, and highlighted both the individuals view and the family's.
Lanterna........In put into ''End of Life choices '' I believe are very important.....this is one of the reasons I believe in Living Wills, choices are given in regard to treatments so they should be availabe for ' End of life '' too.........pleased to see you are full of beaniness.
Westside Sue......Your post moved me so much, how true your comment....'' If my friend was a dog, her family would be had up for animal cruelty. ''....your poor friend has lost her dignity.....which I think brings the phrase '' Dying with Dignity ' into thought......if dignity has been lost and quality of life is nil there should be a choice. I hope your friend finds the peace she wants and does not continue to suffer as she is.
I watched my grandmother die from throat cancer, she often wrote down that she just wanted to die....that was 33 years ago.
I watched my friend die from secondary breast cancer 2 years ago....2 months before her death she decided she didn't want visitors...a wish I respected, when she went into the hospice the decision on visitors was made for her by her husband.....although she appeared to be pleased to see people....I often wonder if she would of rather people remembered her as she was before that stage.
Hope you all continue to be full of beaniness!
I saw the programme and was moved to tears as I have a friend with a progressive illness who wants to go to Switzerland. Unfortunately, her health is now so poor she is unfit to fly, and due to her incontinence and other indignities, she is unable to be driven that far. I saw her on Saturday and she was in tears, had enough, desperately wanting to die. She took all her anti depressants on Saturday night, hoping to end her life, but she's still with us! As she is not in pain as such, she has no access to barbiturates or opiates. Incidentally, her anti depressants are not for depression, but to tranquilise her a bit as she was very aggressive at one point.
My friend is confined to an electric wheelchair, has to use a hoist to get from her chair to her bed, cannot drink a cup of tea except in a toddlers beaker and through a straw. Sometimes she struggles even to get the straw to her lips due to her tremors. She struggles to control her fingers enough to operate her electric wheelchair. She is catheterised. She has bowel problems. She chokes. She vomits. She talks in a drunken fashion. She gets confused. She lacks the concentration required to read or watch television. She is housebound. She sees very few people except carers - and that costs them more than they get in DLA etc. She has the indignity of having to have strangers wash her, shower her, empty her catheter bag etc. She has no privacy left and is a shadow of her former self.
Watching her decline, watching her suffer and her angst at watching her family suffer along with her, has only served to reaffirm my belief we should have the choice. There should be choice, but the decision should be assessed by medical professionals in order to prevent abuse.
If my friend was a dog, her family would be had up for animal cruelty.
Didn't see the prog but...why on earth would it be "selfish" to decide you'd had enough? It's your life, your treatment, your death.
I would like to have a bit of input into the endgame, just as I expect an involvement with treatment.
Stay bouncing and full of beaniness, girls!
I watched it - against my better judgement, as still in secondary denial on a certain level - and was mightily impressed. It dealt with the subject in a sympathetic and realistic way (based on true story anyway) especially pertaining to immediate family. My other half and I had many and varied interesting and important discussions throughout. The issue should be about choice and the phrase 'good death' was used, which I think is important.
Also bouncing beanily...
Hi Karen..I didn't see the programme but as someone with secondaries I know I couldn't make the trip abroad to die. I personally don't think it's a cowards way out though..quite the opposite and I'm much too much of a coward. I hope to have some say in my death, when to stop treatments etc. I do think the person with the illness is the one who should have the final say, I don't think that's selfish at all. I know if the shoe was on the other foot and it was my husband who had terminal cancer and he'd had enough of pain and living I would fully support him in any decision he made...for me that support would be out of love for my husband and I wouldn't see it as a selfish act on his part. When I was first diagnosed I couldn't ever believe there would be a time when I wouldn't want to carry on and have every treatment going thrown at me. Having lost friends I'm now (I hope) older and wiser and can think there may come a time in the future when I'm much too tired and in too much pain to want to carry on living with the help of more chemo. (At the moment I'm full of beans and feeling well but realistic.) Best Wishes...xx
Yes I did watch it, and I was moved to tears.
Part of my work brings me into contact with people with progressive illnesses of many types, and i know that one of the things that is important to to most people I meet is that they retain their dignity - progressive neuro muscular and dementia diseases can rob people of their true self, and leave them as a shadow of the person their family and friends knew. The lady that the programme was based on knew what was in store for her, and chose not to accept that destiny. I applaud her courage - it's not for everyone, and I agree we should all fight for our health, life and love - but progressive illness can be, for some people a step too far. A choice would be a good thing.
Did anyone watch this moving story featuring Julie Walters this evening?
I have always thought I was in support of euthunasia, believing everyone with a terminal/chronic illness has the right to decide when to end their life themselves....believing also that people would be making this decision when they are absoluately certain that they have no more quality of life or will soon be reaching a point when they have none.
Now I have started to question some of things I previously believed to be right.
I felt it was better for family's last days with you to be spent happily....and for the family to remember you that way rather than drugged up, on drips etc.,.......
But is it actually a cowards way out.....and one that actually causes more grief to the family than if you'd died naturally?
I also belived that if you are the one suffering and living with the illness you should be allowed to decide when you'd had enough.......or is that selfish?