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Live webchat with Sophie Pandit, Patron of 'Dignity in Dying' on Tuesday 9th November 1 - 2pm

(74 Posts)
RachelMumsnet (MNHQ) Thu 04-Nov-10 11:00:00

On Tuesday 9th November at 1pm, we'll be joined by Sophie Pandit, Patron of the campaigning organisation, Dignity in Dying.

Sophie helped her mother, Dr Anne Turner, who was suffering from a progressive terminal illness, to travel abroad to be assisted to die. The Turner family's story was then made into a BBC drama, A Short Stay in Switzerland.

Since Sophie's mother died, Sophie has been campaigning for the legalisation of assisted dying in the UK and is a Patron of the campaigning organisation Dignity in Dying.

Had assisted dying been legal in the UK, Sophie's mother would not have had to die so soon (she needed to be still physically able to travel abroad).

She may also have lived long enough to have seen Sophie become a mother herself. Join the discussion with Sophie next Tuesday, or send in your questions in advance to Sophie here.

fruitspooksandheBGBs Thu 04-Nov-10 14:39:17

This will just make me cry so I'll add my bit now. The last thing my mum ever said to me is 'I want to die' however I don't think she would have taken up the option to go abroad to die . she had terminal cancer and the months of watching her suffer were awful, how can that be right for people to have to suffer like that? We all knew what was happening we all knew there was no miracle, why couldn't she have been allowed to end it when she wanted before she became so ill she was delusional.
I don't think that anyone who is against legalising assisted dying can have been through watching someone slowly dying.

Sorry that wasn't a question more of a rant!

ShinySoloSparklySolo Thu 04-Nov-10 15:29:39

I agree fruitspooks. I watched my Dad die from cancer too and it got so harrowing for us. I'm not sure what I'd have done if he'd said he wanted to die sooner than was his time, and I'm not sure I could've done anything myself even though I would've wanted to help him IYSWIM?
There should be help for those that want to be released from life before their inevitable, painful death...we don't let animals suffer, why can't we have something legal in place to stop human suffering during terminal or even incurable but not terminal illness...

vinvinoveritas Thu 04-Nov-10 16:12:20

I have absolute sympathy for and empathy with Sophie. I watched my grandmother tell me she wished she could die as she suffered in the last stages of her pancreatic cancer.
However, I am personally against assisted dying being legalised in the UK because I fear that many vulnerable people will be at risk because of this. The number of elderly sick relatives who feel they need to die instead of burden their families, the number of people who are pressurised and coerced into it so people can inherit their estates upon their deaths, the list of potential situations where vulnerable people may end up terminating their lives early seems endless.

I would like to know how Dignity in Dying proposes, with a legalisation of assisted dying, a sensible plan to protect the many vulnerable elderly or unwell people who will be pressurised into early deaths themselves?

If all of these vulnerable people could be protected then I too would back assisted dying as I have seen too many people lose all dignity and die in a great deal of pain, but without real foolproof safeguards in place there is no way I would support such a campaign. Holland has encountered many such problems with the legalisation of assisted dying. I'd like to hear Sophie's views.

Thanks

sfxmum Thu 04-Nov-10 17:03:30

I have a great deal of sympathy with this cause, I watched my mother die of cancer just over 26yrs ago
She wanted to die and asked to die earlier than she did and the pain she was experiencing was quite unbearable, I wished I could have helped
I think it is important to have the option of good quality palliative care, which in my view allows for a dignified end as well as invaluable support for the family

I sometimes think that if I were to suffer from some degenerative disease which would rob me of all my faculties I would prefer to be able to die while still able to make decisions and before the suffering became unbearable to all concern

nevergoogle Thu 04-Nov-10 19:27:17

Hi,
I'd like to see some sensible process put together to allow people to be assisted to die and I understand it's a complicated issue of consent and capacity.

My concern with the Swiss method, is that i'm told that it's possible to check in the night before and be given your medication the next day, I'm also told that the person is expected to stand up if possible while taking the medication to allow it to work more quickly and that the whole process is filmed for legal reasons.
Is this close the reality of it?
If so, i'm not convinced of the dignity of this process.

Apparently the dutch have another process which allows people to live for 3 months in a unit for assessment to ascertain capacity etc.

What sort of process do you think would offer the most dignity?

ShinySoloSparklySolo Thu 04-Nov-10 22:49:22

My Dads care was, on the whole very good, but there is nothing dignified about having your 'nappy' changed as an adult, nothing.

whooosh Thu 04-Nov-10 23:52:54

Having seen many people suffer not only physically but mentally and "live" exist in a state which we really would not let an animal suffer,I am with Sophie.

I would like to know if Sophie could ever imagine the following situation becoming reality in the UK?

Before I am shouted down....As I am not preparing this for submission to anyone,let alone parliament,it is not an unflawed,or even fully explored/debated suggestion so please remember that.

At the age of 65,(or upon confirmed diagnosis of a life-limiting/terminal/severely disabling etc we are all issued,along with our bus pass our "right to die" pass.
When we decide the time is right,we have to submit our pass,witnessed by GP plus nurse/A.N Other.
We then have a 3 month "cooling off" period where maybe there is counselling available but moreover a signing-on type procedure to ensure that the patient is still clear on their wishes and wants to proceed.
When the time comes,my "wish" would be that the patient had the choice (home or hospital)of where they could end their life with dignity,surrounded by whomever they wished,without the fear that their loved ones may be punished.

As I have said,this is clearly a rather simplistic view but feel as strongly that we have a right to live,we should also have a right to die without having to resort to the stress and strain of travelling abroad or worse still,the stigma and hideousness of suicide.

I have no desire to be a burden on society,my child or care staff in my dotage,or God forbid sooner.
I don't want to have to beg my child to smother me with a pillow because there is no alternative.
I have no desire to suffer the indignity of having my nappy changed,not be able to make simple decisions such as which TV channel I want to watch.If I am struck by a degenerative illness,I want to be able to choose how long I do,or don't "hang on."

I could ramble on about this for pages but I sincerely hope that during my lifetime a law is passed which will allow those, who so desire, to die with dignity.

ShinySoloSparklySolo Fri 05-Nov-10 09:48:04

Very good post whooosh.

EdgarAirbombPoe Fri 05-Nov-10 13:16:13

my question: does she support euthanasia for people beyond the point where they can give consent? if so under what circumstances?

i definitely support Sophies endeavour in general terms - people should not be forced to live if they don't want to.

Avocadoes Fri 05-Nov-10 14:40:44

Are MN also going to have a webchat with someone who will put the case against assisted dying? Or is MN campaigning on one side of this debate?

thefirstmrsDeVeerie Fri 05-Nov-10 20:04:55

I watched my 14 year old DD suffer and die from cancer nearly 5 years ago.

We were incredibly lucky to have a wonderful support system from nurses she knew and trusted. She was able to be at home and had a place available at a hospice ( 15mins away) so she neednt go into hospital (she really didnt want to go).

Her pain was better controlled at this time than at any other time in her long illness. She was also able to recieve platlet transfusions so she wouldnt bleed to death.

How many other children, let alone adults are able to receive this sort of end of life care? I work with the team responsible for her care and I know that their funding has been cut.

Despite my darling having a 'good' death she suffered a great deal and I had worked out what I would do if I had to. I would have been willing to go to prison for it. I was lucky, I didnt have to take that chance.

I dont know if I have added much to the debate and I dont really know what to ask but this is such an important issue. End of life care is a lottery it seems. People shouldnt be scared about what is going to happen to them.

I had the priviledge of caring for and advocating for my DD. Not everyone is able to do this or has someone to do it on their behalf.

whooosh Fri 05-Nov-10 23:22:10

TMFDV (apologies for acronym).
Firstly,I am so sorry for your loss as there can be no greater than losing a child.I am sorry you had to witness her suffering as again,as a Mother,we are supposed to "make it better".It is a truly helpless feeling when we can't make it better (having experienced the same despair but different situation.
It is very interesting,as sad as it is,to hear a story which involves a young person.It think "we" generally associate assisted dying with the older members of society.
I would like to think that I could have made the ultimate unselfish decision that you had thought through/planned had her care not been as good as it was near the end.
You are a truly brave woman and your story should surely add weight to the campaign for the right to a dignified death at the time of our choosing.
Thank you for posting this and I sincerely hope that life is as good as it can be for you after losing your daughter.

vinvinoveritas Sat 06-Nov-10 15:13:50

I think assisted dying already happens, though, whoosh. My daughter died after months of pain- I made the awful 'decision' to not continue with treatment. I thought that she would just 'go' but that's not how it happened at all. She had an awful lot of morphine administered by a nurse 'so she didn't feel any pain'- by my calculations (she only weighed 10kg) it was enough to facilitate and speed her death.

I still, even with my life experience of people suffering, cannot accept legalisation as a viable solution. I just can't see how vulnerable members of society can be sufficiently safeguarded, and that is what I'd love to hear Sophie explain while she is here.

thefirstmrsDeVeerie Sat 06-Nov-10 15:17:58

Thank you Whooosh.
I often think of how awful it must be for older people in my DD's situation. As her mother I had certain legal rights to information etc and had a lot of say in her care.

Who can do this for adults? Relatives do not have rights to information or even to stay with their loved ones in hospital. I could make sure my DD was fed and clean and cared for because I stayed with her every day she was in hospital.

No wonder so many people fear what will happen to them when the become terminally ill.

If everyone could have the care my DD had perhaps we wouldnt need laws to allow assisted death. Because people would know that their pain would be managed, they could be where they wanted to be with those they love around them (or not if they chose).

As a mother I also knew if I had to do something it would be totally right, I knew I would be doing the best thing. As a relative or friend how could you ever feel that sure? Its too much to ask of someone.

I hope that things can change for the better. Its a part of medicine that is ignored and underfunded.

thefirstmrsDeVeerie Sat 06-Nov-10 15:21:02

I meant to say, thank you because when I have admitted this in other places I have been accused of being no better than a murderer.

That was nice.

vinvinoveritas Sat 06-Nov-10 15:25:47

by he way thefirstmrsDeVeerie I am so sorry for your loss and completely understand the powerless and very distressing position you found yourself in sad I hope my posts are not disrespectful. I just have concerns, personally, about the viability of actually legalising it. For all the people it could help, there may be twice the number of vulnerable people whose lives will end early for the wrong reasons. That's my concern.

thefirstmrsDeVeerie Sat 06-Nov-10 15:49:28

Not at all vinvino.

Its a very complex issue. I would far rather end of life care was improved so no one would have to contemplate ending their lives through fear and pain.

But I am also aware of how 'lucky' we were so can see totally why people want the laws changed.

I have a disabled child and work with severely disabled children and my OH is disabled so from that point of view I have strong reservations.

Things are not right the way they are. I just dont know how they can be made right. This is a conversation we have to have.

WilfShelf Sat 06-Nov-10 18:50:35

TFMDV, thank you for your post. I will think of your daughter tonight, even though I never knew her, and I will think of you demonstrating such courage with her.

I have not (yet) lost any close relatives or friends to terminal illnesses, although my DH saw both his parents die long slow painful, undignified deaths. The palliative care was as good as it could be, but I think symptom control and pain relief can only go so far. It is not only pain, but the loss of human dignity that matters.

I think another stage has to be reached before we go down the route of legalising assisted dying, and that is that death needs to be more evident, discussed, understood, seen. And in particular, it needs to be clear what kind of deaths people die when suffering, for example, from advanced cancer or nervous system illnesses. People don't want to know, or think about this. And I don't just mean the awfulness of it, but also where possible, the peaceful, well-managed versions.

Until we can have an open debate about what death really IS, we can't really have an open debate about how to manage it. I think it is like birth, in that we neither want to send people off into a cave to do it by themselves, nor to completely medicalise it. We need knowledge, experiences, evidence in the public realm not sequestered in the medical literature, or arcane ethical discussions which bear no relation to people's experience. And the voices of the dying must be heard, somehow.

I am also equally clear however, that I think that the only voices to be heard cannot only be those with direct experience of others' dying or those who know they are dying. It is precisely because they are so directly involved that they cannot be the only ones to hold the decision making power: they will not be able to judge dispassionately about such difficult ethical decisions. For the same reason, I think those with religious views cannot claim moral superiority either.

sarah293 Sun 07-Nov-10 16:59:12

Message withdrawn

thefirstMrsDeVere Sun 07-Nov-10 20:30:26

Yes, thats what I meant to say, Riven, but got a bit sidetracked. Thanks for putting it more sucinctly smile

prettybird Mon 08-Nov-10 09:25:34

What is your view on living wills/advance directives? How can we make them more enforceable?

I need to do one for myself: I have the evidence in my won family of what happens when you don't get round to it, in that my parents had produced living will just before going on holiday to India but hadn't got round to signing them (fortunately they did sign their Powers of Attorney just before going) where my mum had an accident which included a frnoto temporal head injury. Even though she made (with hindsight) about a 70-80% recovery, even if she had subsequently signed it, it could have been challenged becasue of the head injury. What makes it evn more distressing is that 3+ years on she has now developed (they think) a rare form of early (and rapid) onset fronoto temporal dementioa which means that she is deteriorating rapidly and even though she retains all her memories, she doesn't have the emotional understading to recognise why dad can't look after her any more and why she needs to be in a home (she falls all the time as she has lost the ability to balance). Even the home is struggling to cope with her. Her quality of life is now zero. She cannot engage intellectually with anyone or anything. She cannot, because of the nature of the damage, get pleasure from anything. It's a case of just watching as she continues to deteriorate and (hopefully sooner rather than later ) die - with no pleasure for anyone involved, just sadness. It's not what she would have wanted.

I don't have a question, I just wanted to add my support. People should have the right to end their lives if they are ill and will not recover.

And my hearts go out to all of you who have nursed ill children and parents. I'm truly sorry for all you have lost.

bigcar Mon 08-Nov-10 17:46:27

I'm so torn on this. I watched both my parents die from cancer and have seen the pain, helplessness and lack of dignity even with relatively good palliative care. I don't think personally, having given this one hell of a lot of thought, that I want a death like that for myself, given the choice I would like to choose when to go.

But, I still worry about how you can legislate to offer enough protection to vulnerable people, there just seem too many variables, too many different conditions. I do worry that assisted death would start to become a cheaper alternative to good palliative care.

If assisted death became law, how would you envisage it working best? Living wills, opt in, opt out or some other way? What would happen to people with learning disabilities, how would their voice be heard/accounted for?

Deemented Tue 09-Nov-10 06:00:13

I do believe everyone should have the right to decide when they want to die. I also think that before this ever happens, we as a society need to stop thinking of death as such a taboo subject and start looking at it as the natural part of life it so obviously is.

I guess my question is - given that we as a nation are so afraid of death, do you realisticly think that this will ever become law? I'm in my early thirties and i can't honestly see it happening in my lifetime, as much as i think it should.

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