Anyone watching "Terry Pratchett: Choosing to Die"

[MindyMacready]

Uncomfortable viewing.

Yet again very grateful for Mumsnet and so many grounded views rather than just the usual generalities you read on these issues. My mum had motor neurone disease and died in peace and with dignity in our home. Listening to the birds in our back garden and knowing the surrondings she'd lived in for years.

I think (and am in no way sure) that the right to die should be recognised, we are capable of more than fluffy thoughts, and it's wrong that people have to travel away from their homes and families at such a stressful time. But for every rightous article from a broadsheet hack bemoaning the lack of this 'right' we must, must, must focus on the living, the courage and the bravery of people across the country who live with dignity. The advances scientists are making and the role we can probably all play in supporting people we know who are poorly.

Riven and Aliceliddell are so right on this.

This is not a glorious right that should be celebrated, instead the issue should shine a spotlight on how we support people with amazingly challenging illnesses, perhaps it should be part of the answer, but we are in such trouble if we stop there.

One thing that did not come up in the programme was the amount of money if costs to use the services of Dignitas. I am led to believe the amount is about £10K.
The Swiss are considering making Dignitas unavailable to non Swiss nationals. What will the alternative be then as no other country will allow non nationals to use their services?

what brilliant, moving comments here.

You know......makes me think about my mum, who's right now struggling so hard through frightening, occasionally terrifying (for her) dementia, who, tonight told me on the phone that she can't get used to the idea that she wasn't here when Daddy died. (She was here, she just thinks she wasn't and it tears her up) She suffers and fights and tries to be ok, and tries to make sense of this increasingly confusing and frightening reality around her. It's so hard. For us her children and for her. What's it like for her? What would she do if she had the choice?

Just thinking out loud.

As you were.

It's sad that people sometimes feel they have no option other than AS. I work in palliative care and have seen the vast majority of people dying peacefully, but I realise that these are people who have access to that specialist care from a multi disciplinary team who support the individual and their family, and are also given a choice of where they die. All too often people are admitted to hospital as families are unable to cope with what is obviously a very frightening and stressful situation; care can be excellent in hospital but we are all aware that it often falls short of our expectations.

In an ideal world the care and support provided by hospices and other specialist palliative care services would be available to all dying patients as was the vision of the End of Life Care Strategy. It will be interesting to see how things move forward with NHS reforms. I fear it will not be for the better.

bebanjo - TP was making the documentary, not dying. He is still alive.

wmmc - my Mum had the same experience except it was the ICU nurses who upped the morphine dose, not us. She was given a large morphine bolus at about 6am (had been on it steadily for some time) and went downhill much faster after that. The previous day, she had removed her own feeding tube and told them to stop treatment - she had Had Enough. She was on a ventilator and wanted it removed but the consultant told her they couldn't do that as she would suffocate very nastily very quickly. I think that many places have an unofficial "let them go" practice, where morphine is used to depress the breathing and eventually stop the heart - I am glad that Mum was able to have that, because her pain was immense (terminal bowel cancer) and she hated hated hated being on the ventilator. :(

Stillchuckingit - they kept referring to it as "poison" but it's Nembutal which is also what they use to put pets to sleep (and execute US prisoners with in some states). It depresses the central nervous system to unconsciousness, coma and death. It's actually a pretty quick and humane way to go - but you're right it is indeed very upsetting to see a human being's life force extinguished like that.

thumbwitch - so sorry about your mum but so brave of the nurses to be able to support her decision to die.

Frankly if my DH or my children, or my parents for that matter were in constant pain and were dying anyway, I'd do it and bugger the consequences - no-one needs to go through weeks of pain if there is no good outcome, unless they choose to. :(

The fact is, in this country, unless you were likely to inherit pots of money, the law would probably be very quick to shrug it's shoulders, say 'we do not approve but we will not act' so it's of little consideration.

But for me it's more fundamental I think - end of life care is vital but once you are in that final stage and you are going to die anyway, does it matter to you if you die on Monday or if you hang on till Wednesday. It should be a choice and if your choose the former, you should be provided whatever assistance it takes to painlessly end your own life.

Very sad topic but actually wonderfully positive to think that people can still keep control of their own destiny at the end.

wmmc - I'm not sure that the law would shrug its shoulders IF someone reported it. IF no one said anything and the doctor signed off on the death certificate with no problems then I agree - but IF anyone should take it into their heads to suggest any suspicious circumstances, one could get into a hell of a lot of trouble. Sad but true. Apart from that, I totally agree with you.

thumbwitch - you are right. That decision made by the nurses, presumably with the support of a doctor who signed the bolus prescrition puts them in such an invidious position - but obviously done with the best interests of your mother who really expressed her wish to die.

In effect making the decision to end a life by administering pain relief in massive quantities, by starving or dehydrating people, choosing not to resuciate. In any other circumstance that would result rightly in everyone involved being prosecuted. Yet another example of the Govt and The Courts refusng to make a decision and leaving medical practicioners in a legal grey area.

my ds step grandads just died from cancer and he was really bad ,and just befor he lost his power of speech he said you wunt let a dog suffer ,but yet we have to, he died at home too

Even after watching the programme, I'm still against the idea of assisted suicide. I know they commented in the programme that it would not "open a can of worms", but I'm not convinced and believe that people with a terminal illness would feel pressure to end their life rather than "burdening" their families. Rather than pushing for assisted suicide to be legalised, I think more effort should be placed on improving the availability of excellent end-of-life care and providing the correct level of support for those who need it to continue to have a good quality of life either at home or in a hospice setting.

My views are definitely coloured by what I see in my workplace - often people say that they would like to be "put-to-sleep" when things are bad, but with appropriate medication and support, things are often improved and allows people and their families to come to terms with a disease progression and allows the dying person to end any unfinished business. As others have said, once it gets past a certain point, a person does not have the capacity to make the decision and I would be concerned that either a dying person feels pressure to end their life earlier than they would probably want to so to prevent them becoming a burden on their families.

I didn't watch the tv program.

But on a personal note, my dad was diagnosed with Motor Neurone disease.

He deteriorated very fast after diagnosis and was wheel-chair bound and unable to speak within months. As a man who had once played semi-professional football and who had always been very fit and active, this state was barely tolerable.

He was lucky enough to be provided with, and able to use a 'lightwriter' (a keyboard which you could type into and then press a key to have a computerised voice say what you had just typed) and about a month before he died he typed out: "If I was my dog, I'd have been put down by now. I'd like to be my dog."

I do think there should be more appreciation for the fact that sometimes the physical act of continuing to exist can just be so terrible that you do just want it to be over. Not only for yourself, but for loved ones who are suffering because you suffer.

I agree entirely with iliketea. Many people say 'I want to die in manner of my choosing' - ie it's my life, my choice, why should anyone else interfere'. Many would agree.

But once a law exists that allows assisted suicide etc, then pressure can be put on someone with a degenerative condition that costs a lot of money and time in nursing care/social care or someone in extreme old age, that it's the decent thing to do. The arguments in favour are huge - bed-blocking, had a good life already, go before you get worse, take strain off your family, don't waste the money, don't be selfish. The only argument against it is 'I don't want to die'.

Please understand that I don't believe that anyone here would treat a member of their family like that, but the pressure on some elderly/ill people could be subtle, or they may feel guilty at taking up the nursing staff time.

Watching my father essentially slowly drown due to fluid on the lungs cause by small cell lung cancer (having given up smoking almost 40 years previously) was the most distressing, terrifying and heartbreaking experience of my life. Stroking his head and telling him how much I loved him whilst he fought for every breath was the only thing I could do for this man that I adored with all my heart. Watching someone utterly at the mercy of pain and suffering in the last days of their life knowing that the end is inevitable makes the worst thing to happen in life even more terrible.

I felt awful for feeling this but I remember going home from the hospital just a few hours before he passed away sobbing to my dh that i was terrified this would go on and on for weeks and his last weeks would be filled with the look of terror and pain he tried so bravely to hide. That night he passed away probably due to a heart attack from the strain on his body. There are conditions where there will simply be no conclusion but the inevitable and whilst i understand conditions such as dementia will need much consideration, legislation and an unenviable ethics decision to be made, there are illnesses that hold nothing but pain, fear and desperation in the final moments. If my dad had asked for assisted suicide and the option had existed, I would have supported his decision. I can't say it would have made the situation any less heartbreaking and make the grief any less but it may have spared him pain and suffering.

MindySimmons and Piggles I feel reluctant to comment in the light of your very distressing experiences but I can't help feeling it is outrageous in this day and age with the level of medical expertise available, that your repective fathers and families had to go through such appallingly distressing experiences.

I'm no expert, and perhaps it is naieve of me to question it, but I can't help asking WHY this is still happening in this day and age? Or that if more resources and expertise were invested in ameliorating the effects of these horrible diseases, that people wouldn't be driven to consider AD.

My father died a peaceful death from cancer of the oesophagus (not very pleasant - he had swallowing and breathing difficulties) in an RC hospice, surrounded by his family (who were also supported wonderfully by the staff). Throughout his stay, he was treated as an individual and with complete dignity. He could look out of his bed at a beautiful garden, the night before he died he was offered a shot of whisky and ginger cake (he couldn't indulge but appreciated the gesture) and his pain and other distressing symptoms were managed well. Despite very distressing symptoms, he achieved a good death, in his own time.

The tragedy is that this superlative level of palliative care is so rarely available and cannot be relied upon.

Has anyone mentioned that the older man (Peter) was extremely wealthy, and could presumably have had access to any amount of a high standard of palliative care either in his home or in a private hospice...?the end he chose was still preferable to him. So it doesn't all come down to money, availability, or the fear of being a burden.

I also wanted to respond to Riven's earlier comment about Andrew (the younger guy with MS) and his feeling life was not worth living as his condition deteriorated. The fact is that men have a far greater suicide rate than women, and statistics show that women with young children very rarely commit suicide, so it is difficult to compare his situation with a mother of young children, even if their conditions are similar.

I think it also has to be remembered that what is bearable for some is unbearable for others.

Stillchuckingit, my father did die in a hospice, with beautiful grounds, lovely food and devoted care - but he just hated being cared for. He didn't want some strange woman washing him, he didn't want to be confined to bed and have all his family fawning over him (some of the ones he hadn't seen for years included). No matter how devoted an genuine they may be there is still something that a lot of people find deeply off putting about those who work in palliative care - that the would prefer not to have the attention of those who work with death. Just because those who did the paid caring think it was a good death doesn't necessarily mean that the person who died would have done.

LordSucre, my point is that, as disabled people, the only demand we make which is taken seriously is the right to die. Enormous amounts of energy and airtime is devoted to these arguments. At the same time, we are constantly required to demonstrate our eligibility for any benefits, parking, etc. We're then 'passed' as 'genuine', 'vulnerable', 'deserving' of toleration. I can't get in eitherof my local bookshops. I can't use my local rail station which now has high speed trains. Not high speed for me, because I have to go to another station to get access. I can't see my dd's art work at her school. The most effective treatment for my condition is not available on NHS, so I use benefits to pay for private healthcre, which I despise. I could go on. And on. And on. But all I'm offered is admiration for my courage in exercising my 'right' to die. Actually, I had been planning to live first.

Lions, I made that point too. He was wealthy, and also his wife really didn't want him to do it, but she respected his decision as his own.

So the cost of care, or of being a burden, or of wanting to release his loved ones, clearly were not the reasons.

Personally, I think it's a bit disrespectful of anybody to suggest that they know best when other people should die (ie, at the very bitter end). My own personal experience of people with these views are that they are often religious, and that their religious beliefs are informing their view on 'sanctity of life'.

That's fine for them, but not fair on the general population in a secular society.

I agree that end of life care should be drastically improved, but who is going to pay for this? There are any number of crises facing public services and we can't fund them all without raising taxes, which nobody wants the gvt to do.

Even with the best hospice care being available, some people would rather be dead than live on to the natural end. They don't owe anybody an explanation imo - if I wanted to die for whatever reason, that would be my personal wish and frankly none of anybody else's business apart from of course, my loved ones and my doctors. I'm afraid I would utterly detest the idea of a religious person telling me that in fact I was wrong and that my life had value - when the best and only judge of that is me.

Well-said Morris.

Alice I think it is awful that you have such difficulties and feel so badly treated. I am really sure that most people in general society think you should be treated fairly and have the same opportunities as the majority in . I still can't see why anyone shouldn't have the right to decide on their OWN life, not anyone else's.

Fair enough, but I don't think this is about other people, with religious beliefs or not, deciding what you do with your life

It's about having the resources and proper care available should you wish to die naturally. All too often, it just doesn't exist.

Babyreindeer my father didn't want to be in position where he had to be nursed by others either - but having contracted the disease - it was the best choice available to him. No-one wants to contract a terminal disease - but it happens.

As for those "working with death" - many of them are ordinary doctors and nurses who have come from other areas of nursing but who have found working with people at the end of life to be genuinely fulfilling. I don't find anything "offputting" or "morbid" about that. Death is an important part of life.

Finally, I find your last comment rather offensive

"Just because those who did the paid caring think it was a good death doesn't necessarily mean that the person who died would have done."

This is nothing to do with what the nurses and doctors thought. I happen to know - because we asked him and he told us - that my father was happy with his choice and because he was, we, his family, were as well.

What Morris said

What aliceliddell said