Yesterday I watched the BBC documentary, Terry Pratchett – Choosing to Die, where Sir Terry Pratchett explored the contentious issue of assisted suicide. The programme has created much controversy, in particular for filming the final moments of Motor Neurone Disease sufferer Peter Smedley, drinking his glass of poison at the Swiss clinic, Dignitas.
My own father died of MND in February this year so this was a hard programme for me to watch. But watch it I did. I have great admiration for Peter Smedley and his wonderful wife, Christine, and I defend their decision to wish to avoid a protracted illness, by ending his life far sooner than necessary but when he was still capable of travelling and physically able to take the liquid which would kill him. However I can’t help but wonder what the years ahead would have been like for this gracious, charming couple if they had decided to wait and see.
My dad was diagnosed with the disease in 1994 at the age of 60. I remember hearing the devastating news and, at the time, expecting his life to be over in a couple of years, at most. In fact he lived until 2011, dying peacefully in a hospice at the reasonably ripe old age of 76. In those years he saw the birth of my son, Rory, sat with him completing jigsaws, helped him to draw, read him stories, watched him grow up to be a young man.
His life wasn’t easy, he was virtually immobile in the latter years, but he never wanted his life to end. He endured the indignity of requiring help from carers to wash him and see to his needs, but was then able to sit in his wheelchair, paint, complete crosswords with my mum, watch the TV, listen to music, laugh and be part of a loving family.
I’m so grateful he didn’t decide to make things easier for everyone by choosing to end his life early; he would have missed out on so much. He knew the prognosis but, with the support of everyone around him, lived the life that was given to him to the best of his ability. In his final weeks he received care from excellent Macmillan Nurses and at the end, St Oswald’s Hospice in Newcastle upon Tyne made sure, with their outstanding palliative care, that he didn’t die a painful death. Mum was with him and he just slipped away.
I know there have been complaints about the BBC programme but I found it a very moving film and one which was also balanced. I cried watching Peter taking his own life, his words, “I understand” a constant reply to the questions he was asked regarding his decision. I felt desperately frustrated for the younger man, Andrew, an MS sufferer, who took the same decision to die when, to me, he seemed so full of life, enjoying the sights of Zurich. I wanted to shout, “Stay and enjoy Zurich! Savour every last drop of your life!”
But there was another man who was filmed who seems to have been forgotten in all the post-broadcast debate. Mick, the former taxi-driver, had been suffering from MND for seven years and had made the decision, with the support of his wife, to not take the suicide option. His wife wanted to care for him, they would take it in their stride and they had a fantastic hospice which would be there to care for him. His decision was just as brave as Peter and Andrews’: the progression of his MND is likely to be very hard for him.
I’m not entirely sure where I stand on the idea of euthanasia. I defend Peter and Andrew’s decision to end their lives, I think it sad they should have to travel to Switzerland in order to do this, but I’m also very wary of rushing into providing such a service as a matter of course here. If it had been available in the UK, if it had been the norm to have such an option, would my father have worried about being a burden and therefore taken his own life early?
I think, while the debate continues, the government should support palliative care services in this country so that they aren’t just relying on charitable donations. If everyone had good access to the kind of care my father received, then seeking an early date to shuffle off this mortal coil might not be so critical.
It must have been hard for you to watch. Some really valid points there, I have to say I feel the same way. I respect their decision, but part of me can't help feeling but what if you have some good years ahead? A very difficult one indeed. Emma
I think the important right to fight for with regards this issue is choice. People should have the right to make an informed choice. After all, if we can't own our own lives what can we own. But you raise another important issue too: Quality care. This should be available to everybody as a balance to the other alternative.
@Emma – It is difficult and I wouldn't want to come down on one side or the other with regard to this issue.
@Steve – I agree whole-heartedly but it needs to be carefully thought-out so that vulnerable people are protected. I remember my dad completed a 'Living Will' with the doctor at the hospice some years ago. He had strong views on not wanting to be resuscitated, didn't want to be fed with an internal tube etc. So he made his choices then. This was a good way to prevent being kept alive longer than you would wish.
Your dad had a fantastic disposition, which not only made his own life more bearable, but made it easier for everyone to care for him and be around him. Even last summer, he was fully engaged in our gathering and clearly delighted to see everyone. Not everyone is this fortunate; depression might be a huge possibility or perhaps fear. It's a very complicated issue indeed.
It is a tricky issue. Part of me says that we should be able to decide if we want to end things, but I know that there'll be families who abuse the situation and force their vulnerable members of the family to 'stop being a burden'.
The other problem is quality and payment of care. My mother has been jumping through hoops dealing with my dotty dad and trying not to lose her home in the process.
There seems to be a huge need for some joined up thinking, and transparent honesty regarding the economics of life.
What you say is absolutely on the nail Trish. I couldn't/didn't want to watch the programme I admit….and I'm not sure why….out of sight out of mind I suspect. The fact that your dad had those years and lived them with such grace is wonderful.
@Expat Mum – That's such an important factor, Toni. Dad was a cheerful, tolerant man and he had the constant love and care from my mum which made a huge difference. I did wonder whether the younger man in the film was probably suffering from depression which caused him to see no future for himself.
@Sarah – again, really valid points. My parents had a lot of worry with regard to obtaining the right care: the low wages of carers in general meant that some individuals weren't up to the job. Yet it cost my parents, and the local authority, a lot of money to obtain such services. In the last few months my dad was assessed again (more form filling and hoop jumping) when he eventually received free nursing care.
Joined up thinking – absolutely.
@Libby – I don't think it's on iPlayer anymore but it's worth trying to catch it when it's next on. Despite what some critics said, I thought the topic was very well handled and seeing Terry Pratchett and his assistant visibly moved by the experience was compelling.
I suppose if your dad or anyone else was getting treatment on the NHS if euthanasia were legal then maybe there might be pressure on terminally ill patients to sort of do the decent thing and not be a burden so that might be rife for abuse. But I think euthanasia should be legal in theory at least.
I can understand how hard it must have been for you to watch, and I am really glad for you all that your Dad did not make that decision and was still with you for many more years.
This debate has been going on for years in Switzerland, and I do not quite know where I stand either. All I can say is that it must take an enormous amount of courage to do this.
My father lived much longer than expected and he didn't suffer so much as to make me think that this would have been a good option for him, or us. But for some it may be.
@EmmaK – I think this is where Im standing too: I have no problem with the legal right to die but I'm concerned if that euthanasia was commonplace, money and efforts might, over time, drift away from care for the elderly and palliative care.
@Funky Wellies – I agree. My heart went out to the two men in the programme, and their families. There is no easy answer.
@Kelloggsville – You're right, for some it may well be the best thing. I just wished, for the two men who went to Switzerland to end their lives, they had been able to hold off a little longer as they still seemed to have a life worth living in the short term. But, of course, to make the journey and take the decision, they needed to be physically and mentally fit enough. Catch 22. So sad.
Yes I think for all the reasons listed above this will be debated legally for many many more years. It is an impossible responsibility to be THE ONE to make it law and then worry about the abuse. Such a hard one. Too hard.
@Madame SG – Indeed, too hard. Interesting to note from the comment by Funky Welllies that in Switzerland the debate still rages on, probably because there are pros and cons on each side.
Ow. So hard to watch that so soon after losing your own dad. But you're right, a really important discussion that should be had. I hate the idea of people being forced into a decision for fear of being a 'burden' – especially in the US, where long-term care is rarely guaranteed, often inadequate (unless you're fabulously wealthy) and can run a middle-class family into bankruptcy very quickly. On the other hand, I hate the idea of someone being forced to suffer a prolonged and/or painful death against his/her will when medical science can provide gentle and comfortable ways to end life. It is an intensely personal decision, too. I have always said that, as long as I can read and enjoy people around me, I would like to be around (assuming I wasn't in too much pain.) But many others wouldn't be able to tolerate the lack of independence. Such a conundrum, in the midst of all our modern technology, we can't seem to get the question of how to die sorted out….
It must have been a painful watch for you, I read another blogger's take on it but I didn't watch it myself, I know it's on iplayer but I just haven't got the will to watch xxx
@MsCaroline – Thanks so much for such a detailed reply, Caroline. There don't seem to be any easy answers and it would seem in the US the thorny issue of cost is even more of a problem than here.
@auntiegwen – I thought it would be a painful watch but it was actually more thought-provoking than anything.
I thought that my views on euthanasia were pretty cut and dried but your Dad's story has made me seriously rethink it.
You can't help wonder how many people would choose what they perceive to be the easy option when they may have many good years left in them.
I also worry that some people may even be pushed (or slightly nudged) to making this decision if it were readily available on the NHS.
Food for thought indeed, and I am glad that your Dad got the care to enable him to live his last years so well. xx
@Very Bored – I'm so touched, Wendy, that the story of my dad's experience should make you think again. I was talking to my mum this morning and, although she had many years of caring for my dad which was physically exhausting, she wouldn't have had it any other way. Every last moment together was precious.
A contentious one Trish! My own thoughts are that it has to be a decision made entirely by the individual. Personaly I have a horror of being demented and slowly starving to death in an old folks home, as so many do – as my aunt, in fact, did.
I'd fight for my right to choose euthenasia everytime.
@Macy – I know, it's so contentious and I can't decide which way I want to lean! I'm so sorry about your Aunt. I think as long as any move towards allowing euthanasia goes hand in hand with resources going towards palliative care then I think yes, it has value.
I just wish the chaps in the film had been able to have longer before taking their own lives: which, I suppose if we had a Dignitas clinic in the UK, would have made the decision easier for them. Maybe this idea of a Living Will, which my dad drew up, is worth promoting as a third way. Dad would not have been resuscitated or tube-fed if his condition had got to that stage so he still had some choice about his right to die.
As long as you don't go through insufferable pain and you manage to hold on to your human dignity, it must be possible to hold on to the very end. I think it's a very personal decision.
@Nora – Maybe that's the answer. If a government is going to put into practice some kind of assisted suicide arrangements, then match it with top-notch pain free terminal care so that every individual has the choice to end their days in the way they wish.
a lovely, considered post. But you have to be pro choice. I don't think it would ever become "the norm", the instinct to cling on to life is so strong, i am certian it would only be a select few who would choose this option.
X