The "E" word? what are your opinions?

[Jo1958]

I don't think it's up to me unless it's about me, if you are in a position to ask and have the conversation about end of life care and what it means then do and get it written up and signed, now.

So many of us put it off until it is too late to do anything about our personal wishes and values, such a shame as then it's up to someone else and none of us want the responsibility of deciding for someone else.

If you are talking to your children about it then get them to decide for themselves, get it written down, signed and be a part of their lives ongoing, when their circumstances change then they are re-write and re-sign the paperwork, it is our own responsibility to take care of ourselves.
With best wishes from Jo

 

[zeeeb]

It's possibly the hardest topic of all.

I am so pro-euthanasia for myself. I totally know what I want if i should ever get a terminal illness, and I've made it clear to my parents, my sister, my partner (who was bought up catholic and struggles terribly with the concept), and when my children are old enough, it will be made clear to them (they are only 3 and 5 now).

My mum is EXACTLY the same as me in her thoughts on the matter. We have talked about this topic for years, since I was in school, watching my 3 grandparents go through 3 different end of life scenarios "strokes, alzheimers, and normal healthy old age".

I know how she feels, but she hasn't the strength to actively make those decisions right now at the beginning of her alzheimers journey while she's suffering depression. She wishes there was a simple form she could sign, a big red button she could push "when the time comes" and it'll all just happen. Not that simple.

Last time she told me that "anything i could do for her when the time comes, she would be eternally grateful". I said to her "I think you need to go and get the DNR tattoo then mum" and i was met with a shocked look on her face, and then I said "i'm serious mum?" If that's what you want, you need to make some hard moves now, face up to dad and make him realise you are serious, stop taking the cholestorol medication, because a heart attack would be a much easier way out. And do it while you still have mental competence. You can't expect me to do it for you, i'll end up in jail". I have 2 young children, i can't go to jail.

she hasn't spoken of it since.

It's hard, because I know deep down, her thoughts are the same as mine. But she's just been emotionally trampled all over and doesn't even feel that she has the right to decide what she's having for tea tonight, let alone the right to end her life if she wants. I wish she had more inner strength, but she just doesn't at the moment.

I've spoken to dad (who is a bit death-phobic) and told him that i need to see her living will, and medical directives, and if it's not clear in that, then they need to go back to a lawyer and put it in place, so that if in the next decade or 2, the euthanasia laws change, that we are not powerless. Because I couldn't think of anything worse, than her following my grandmother in law and living til she's 97 after having AD for 40 years!!! Hell on earth.

 

[Chemmy]

That's a really interesting conversation you had with your mum, Zeeeb, and I was fascinated with her reaction when you put the ball firmly back in her court (which was exactly the right thing to do).

Giving her the option to stop taking medications now is quite a proactive step and a good test of her resolve; if she's not prepared to do that, I can't see she's actually as committed as she says. Like we've said before, there's a world of difference between the hypothetical and reality.

I think that's what would put me off the tattoo - too difficult to back out once it's done if I changed my mind.

 

[Christin]

I do agree it is the hardest decision of all.

When my FIL reached final stages, his will to live seemed extraordinarily strong, even though he had repeatedly told us he wanted to die for several years. On a good day, about a year before he died, he did actually manage to tell me, that when he went to sleep he wanted to wake up again.

Personally, I don't believe in the E word.

 

[SisterAct]

Dad (86) has VAD and is desperate to live a normal life (cant walk now). He is unaware that he has it and we have never told him as it was one of his two worst fears in his life. (The other was going into a NH!). He tells us that his day centre is full of people with 'Old Timers' and if he ever gets like that to shoot him. Well I don't possess a gun and I don't think I could do it anyway and I always think some good comes out from bad. We have learnt so much more about Dads early life and 'played' a part(s) in it.

He has a DNR with "Unless the Doctors think differently" on his POA as a way of clinging onto his life and to avoid my sister and I having to make any 'difficult' decisions - bless him.
We are in favour of euthansia but for ourselves if we need it not Dad, as he hasnt the capacity and and we couldnt stand the guilt. We are hoping that nature takes its course!

FIL (86) has registered with Dignitas but they say he is not ill enough. He tries persuading them again all the time and continually talks about suicide and purposely flunks his mini mental test.......sometimes I could kill him!!

Sorry that was only a feeling........wouldn't do it I just find life so unfair sometimes.

 

[jenniferpa]

To add to what Zeeb said. The mother of my husbands best friend was diagnosed with AD and actually went downhill really quite quickly. When it got to the point where she didn't know her husband at all, he arranged for them to both move so that they would be near their daughter, got her into a wonderful nursing home and then simply stopped all his medication for his heart condition, ate all the food he wasn't supposed to have after his triple bypass and did in fact die of a heart attack before his wife.

 

[massolina]

I know that if I develop dementia I want out as soon as I no longer can no longer communicate and I lose my dignity and become incontinent, that is it. My best friend has promised me that he would never let me go on like that and I trust him to do that for me. I must be on my own here but once a human being loses the qualities that make them such, ie independance ,reason, intelligence the ability to communicate feed themselves swallow for Gods sake then I would have no problem pulling the plug. I often read on here of people in their 90s whose families are delighted when they pull through after a downturn. WHY???? I adore my father but have a horrible feeling that should he become a gibbering shell of what he was once ,an intelligent, dignified man I would feel nothing but disgust that a human being is reduced to that so if it were me, point me to the Exit door. I'd rather choose my time and take a dignified departure. At least that way I will have beaten the disease in fact beaten the whole system.

 

[snedds57]

I think someone mentioned it in the thread but my understanding is that someone dementia wouldn't have the option to opt for a trip to Dignitas, because of the issues around capacity. After all given the number of times people with dementia change their mind how would you be absolutely sure they understood, or more importantly could retain, the information around such a massive decision especially if made very early on. Personally, I would like to have the choice if faced with a terminal illness but just hope the situation never arises and I pass away quietly in the night (though friends would say quietly isn't a normal occurrence for me!!)

 

[Butter]

Both my Godmother and my mother managed to take matters into their own hands and stopped eating and stopped drinking. They both had dementia. My mother's CH manager told me that the longest they had had a resident survive not eating and drinking was 22 days. My mother survived 4 days.

But I did make it clear that I did not want her admitted to hospital where she would have had intravenous fluid, nutrition and antibiotic. I made it clear that I thought taking her to A and E (as had happened once before) and then admitting her to a ward to 'make her well' was not OK. I said she needed pain relief and that was all.

I had this conversation in front of her loudly and when it finished and I told her I would be back soon she said loudly and clearly 'that will not be soon enough'.

She died the next evening.

 

[JoJoH]

I watched my mum die of cancer and I know the point where she was ready to let go of life. Unfortunately she had been admitted to a general medical ward in a hospital who refused to give her morphine for her pain because the drug might cause her death, even though it was clear that death was not far away. I would happily have given it to her myself if it was legal to do so. I loved my mum and I knew when she was ready to go and I would have done anything to end her pain. (We managed to get mum into a hospice where they were not afraid of using morphine - she died peacefully a few days later)

In an ideal world we would all hope that there would be someone to help us on our way when we are ready and not before. And that raises two problems:
1. What if those closest to us don't have our best interests at heart and choose to end things for us before we are ready?
2. With illnesses like Alzheimers where the sufferer does not have a clear mind, how can anyone tell when the patient is ready to go?

We all have different tolerances of things - what might seem unbearable to us may not seem so to someone else, so it is hard to make choices for other people even with the best intentions. Some people want to die almost as soon as they are diagnosed with a degenerative illness, others choose to cling on to every last moment of life no matter how painful or undignified. And our own values change over time and with different circumstances. We might choose a point now beyond which we think life would be intolerable, but would we still feel the same when we get to that point? And would we be able to tell anyone if we had changed our mind?

In principle I am not opposed to euthanasia but the legal safeguards that must be in place to protect people are extremely complex and I'm not sure that it is something that is suited to illnesses like Alzheimers, however much we might wish it for ourselves and our loved ones.

 

[Dazmum]

I agree absolutely with what you have said Jojo. My uncle has three types of cancer, and was admitted to a hospice just before Christmas 2009. When he was diagnosed as terminal, he sat in our lounge and said what he didn't want was for my aunt, his second wife, to go through what he did when nursing his first wife, also with cancer, and he didn't want to linger.

We didn't think he would last that Christmas, and we went to see him and wrote him cards to say how much we cared for him. He rallied in the hospice due to their wonderful care, and was discharged to a nursing home, which my aunt and her step daughter were put under much pressure by a social worker to find. It was awful, and one day he phoned my aunt in tears, she made arrangements for him to come home, where he has been ever since, bed bound and getting more frail day by day. He wants todie very much. He was a vet, and he says if he had seen an animal as ill as him he would have put it to sleep. My aunt, who is 77, looks after him so amazingly well, with carers coming in three times a day, but it has worn her out, I have no idea how she keeps going; she says that some days she sits on the stairs and counts to ten. Even though he does sometimes hallucinate, he still has the capacity to know and say that he would like to die, as although he has my aunt with him all the time, and can watch his beloved cricket and rugby, he has no quality of life and it breaks my heart to see how he deteriorates, he's one of the most intelligent and witty people I have ever met, and it saddens me that what he said he didn't want to happen is happening. In the earlier days, there was an experimental drug for prostate cancer and he wanted to be part of the trial for it, but the risk was heart failure. He has a dodgy heart too, and as a result was refused, but he said he would prefer to go that way than what was the more likely scenario, but he wasn't allowed. I really think that he should have been allowed to do what he wanted then. He sometimes says to my aunt, 'I think I'm going to die today' and she just says oh ok, alright then'.

 

[LadyA]

The whole question is quite sticky isn't it? I know my husband's GP has even advised me that at this stage, he would advise me not to even get blood tests done for him - Wm tends to bleed a lot, and finds giving blood distressing, and the Doctor just said that his quality of life at the moment is better than they had hoped for, and it's largely down to the care he gets at home - and in his opinion, we'd be as well to leave him alone, and let him enjoy his life. So he gets antibiotics for chest infections and that's about it.

The danger of abuse of euthanasia is I think a biggie - and not even so much from families. Care costs the State so much. Once legalised, my fear would be that pressure would be felt by families not to have an elderly loved one costing so much to maintain. And once the door has been chinked open for terminally ill and elderly - what about children born with disabilities? Who decides? The parents? The doctors? The State? Just my fears about it - maybe unjustified, but maybe not either, with health services under so much pressure.

 

[robertjohnmills]

Hi my view on the issue

I always find this argument about Euthanasia a strange one.

Firstly it is the paradox that medicine extends life beyond its natural length yet refuses to accept the responsibility as the decay eventually sets in. Secondly and ironically, it is a modern thing this fear of death; rather than embracing and celebrating it. Lastly in many countries around the world and even in two states of the USA it is legally practised and so we are hardly breaking moral and ethical ground here.

Rather it is the conservative and unsympathetic behaviour of the do gooders who want to let their prejudice override the comfort and wishes of those seeking dignity.

And before I hear those screaming mental capacity; yes I do however think it should only be conducted upon those with full mental capacity!!!

 

[jimbo 111]

I have followed this debate with great interest
It is not often that a subject such as this gets a response that lasts for so long,
the original question was
“ The E word What are Your opinions?????
For me the answer is straightforward - No , whether it be for physical
disablement or dementia
My opinion was rather different when I was in my 50-60’s Then I was
definitely for the Yes vote
Now I am in my 80’s. I am thank God still of sound mind , but in those
intervening years I have witnessed many deaths ,my parents , my siblings ,
As well as other relatives and friends In fact I am the only one still alive
In my family circle
They have died from many ailments
The one that concerns me most is the death of my wife two years ago
She suffered with Alzheimer’s with all the loss of mental and physical ability , she died from a silent heart attack
From the day she was admitted to hospital they told me there was absolutely no chance of survival and at most she had two days to live
She lived for over a fortnight before she died
For all of her problems before the heart attack , she fought desperately
for her life , She had never discussed any thing about the E Word or what her wishes were But for the life of me I could never have agreed to the termination of her life
Like many people ,I know who have done so in those silent moments I said to her ,please don’t continue to suffer let go and rest in peace
I have no wish to face the terrible consequences of advanced AD ,and have told my sons I do not wish any medical intervention to prolong my life
Ironic isn’t it really to say that with conviction , but the quality of my life must have been prolonged with all the pills I take for blood pressure heart, etc
Uppermost in my mind nowadays is that its all very well for me to say what I want , but it is my sons who will have that responsibility not me ] Daily I read on TP of the enormous guilt some members have in putting their parents into care homes God knows what guilt they would be feeling if even following their parents wishes they were the ones who made the final decision
I am not particularly religious but I know it is against Gods will and my convictions that I could agree the ' E’' end
I pray daily that one day my wife and I will be together again , and I know that would never be if I committed suicide even if it was wrapped up in fancy words like euthanasia , assisted death or whatever I see her fight for life and cannot ignore it
Jimbo 111

 

[putsch]

This is so so difficult. Here are some related life experiences that leave me very doubtful.

My Mother said all her life "shoot me if I get like that". Now at 91 & with dementia I interpret her as saying "one more day" - anything for one more day -she's not able to be specific but it is pretty clear from her behaviour. And that's even now after a major stroke. So "living wills" and all that - well they are all very well at the time but when the moment comes?

A friend told me the other day about a former Dutch colleague of hers whose mother was adamant she wanted the daughters to permit her to euthanise herself when the time came. 3 times she summoned them with a few weeks notice and 3 times she retracted!

I have worked in probate law for a few years and nothing however low would surprise me any more about the greed of children who want to get their hands on parents property and cut others out even to the extent of hastening their end.

And yet I think its crazy to keep people alive at enormous financial and emotional expense to families and the State when the same money could help the young and fit to live safe and fulfilling lives.

What is the answer? I truly don't know and most of the debates are loaded from the start and don't look at the full picture.

 

[Butter]

This is dead serious. And I think you are right at the sharp edge here. My husband (VasD and possible Alzheimers and much loved and respected by me) did a lot of work on The Assisted Dying Bill. He went into it believing we need some version of Dignitas in the UK. He came out of it with more equivocal views: he listened carefully to a number of people with horrendous disabilities but qualities of life that they maintained that they alone should have autonomy over.

 

[Witzend]

If I could help my poor mother on her way now, I would. It has been a living death for her for years now. She is not enjoying anything, or having any fun. She doesn't know any of her family. She has not a clue about anything. She has zero dignity. She does not want to be bothered with anything - even being washed or dressed or 'toileted' is a trial and upsetting for her. But she must endure all these every day. She is 96 and has had AD for God knows how long - at least 12 years. Of course she does not have capacity to decide any big E question for herself, and has not for ages. But I know 100% that it what her former self would have wanted. She would have been aghast and appalled to see what she has turned into.

I would feel differently if she were apparently contented and was getting any enjoyment out of anything. But I have been visiting care homes for many years now - for FIL and an aunt as well as my mother - and have seen so many poor old souls in late stages, permanently confused or agitated or very obviously unhappy - or all three - and yet I wouldn't mind betting many of them were/are on cocktails of meds for all sorts - to keep them 'healthy' - for what?? My mother is not on any, because her general 'health' is good, but if she were, we would ask for them to be stopped.

Even if I were religious, which I am not, I would wonder what sort of God would think it wrong that anyone in the sort of state my mother is in should be helped to go peacefully to sleep and never wake up.

Because I have seen so much of late stage dementia I am probably biased on this, but often, when I read of this or that life-preserving drug being denied to someone younger and entirely compos mentis, because of cost, and then I think of all the vast resources spent on deliberately and actively keeping miserably demented elderly people alive, I do wonder. (That is of course a different thing from actively helping them to go.). But if anyone is reasonably contented in their dementia, and is still enjoying anything, then that is a whole different matter.

 

[Weary]

Yes i am in favour of it . Ive watched my darling MIL in her living hell for the last 2 years with severe Alzheimer's. She lives in a confusing frightening world where she is convinced no one visits her ever. She doesnt know her family or understand anything or anyone. She cant walk and is always in discomfort from her osteoporosis and past breaks from falls. She hardly eats, has no quality of life , doesnt enjoy anything, has no dignity and no hope and constantly cries. Thats not life and its not worth living.

I only pray to God if i ever get it someone will kindly put me out of my misery.

 

[zeeeb]

It's hard, because many people who have to endure the process of alzheimers feel the same, and then we all have friends and relatives who've endured the process of cancers or heart disease, and they fight so hard for life.

I feel guilty for being jealous of someone who dies of a heart attack on behalf of my mum. I hope that a quick heart attack takes her before she has to endure decades of what is to come. It's mind boggling that the best outcome for my mum, is the worst case scenario for many others' mums.

 

[Miss Merlot]

Yes I am in favour - objectively speaking - and would certainly want it for myself, not just if I had dementia, but any crippling illness.

If MIL said she wanted it, I would jump for joy, if I thought she would remember the fact she said it the next day! But as Jeanette says, she enjoys life and doesn't have insight into her condition, even if her old self would be horrified by how she is today.

It is so difficult though with something like Alzheimers - how could we know ever know she really meant what she said...?

If I could push a theoretical button and have her have a massive heart attack or something, I would - no question about it. But in real life, no I would never even hint at the idea, even if that was what would be best for me and my husband, and ultimately her long-term.

DNR though - if the question was put to me and OH, we would both say not to resuscitate. What would we be resuscitating her for but for further decline, distress and demise...? It would be kindest for her to go now, at a stage where she still has some element of pleasure in life and a sliver of dignity left.