Wednesday, June 15, 2011

Terry Pratchett on dying

By the sweat of your brow you will eat your food until you return to the ground,
since from it you were taken;
for dust you are and to dust you will return."
To be human is to die. The story of Adam tells us both of death's inevitability and of the age-old quest to find the way back to Eden, our innate yearning to believe that our return to the clay does not have to be the final word.  But there have always been those stoics who turn their back on hope and embrace the finality without delay.  Socrates drank hemlock, Cleopatra clasped the asp to her breast, Van Gogh shot himself, and those who see the end approaching sometimes prefer to jump across the gap instead of waiting for it to close.

No doubt, too, there have always been those who have been willing to help them on their way, quietly, without drawing attention to the fact.  But in the twenty-first century, ethical and medical changes are combining to bring this process out into the open as never before.  On Monday the BBC fuelled the euthanasia debate by broadcasting "Terry Pratchett: Choosing to Die".  Pratchett, the best-selling author and Alzheimer's sufferer, argued in favour of the right to choose the time and manner of one's own death.  In the course of the documentary, he met three men with terminal conditions, two of whom had chosen to travel to the Swiss clinic, Dignitas, to die. 

When I heard this film was in the pipeline, my first reaction was to side with the blogger Dr Peter Saunders, who writes frequently on this subject.  Why is the BBC "acting as cheerleader" on this matter? (he asks).  I think he is right about this, and it is very difficult to see how the BBC can defend itself against this charge.  Bishop Michael Langrish has made the very reasonable suggestion that a film about the hospice experience would help to balance the debate - perhaps someone at the BBC will take note. 

But we can still take the programme on its merits. I can understand why a broadcaster would go with this angle rather than an "anti" argument or a straight documentary, and it's not just about trying to pull in the viewers. This programme will stimulate debate in a way that no other format would, and that has to be a good thing.  Sir Terry proves to be a sympathetic and engaging guide.  His compassion and liking for his three subjects is as genuine as any reader of his books would expect.  The film is worth watching just for the reactions of Terry and his PA Rob as they visit Dignitas, the one bewildered and intrigued, the other deeply uncomfortable and desperate to be somewhere else.  But the landmark is the moment where we are allowed to witness Peter, a MND sufferer, spending his last moments with his wife before drinking the fatal cocktail.  Not everyone will agree with the appropriateness of broadcasting this, but if it had to be filmed, this would be the way to do it.  This programme is essential watching for anyone who will not be too distressed by it.

Now, a couple of cautions. The first is to say that this is not the all-out propaganda job that Peter Saunders and others are suggesting.  The film raises as many questions about euthanasia as it seeks to answer.  The Dignitas process, in particular, is by no means the idyllic end that some of its supporters seem to believe, and neither the presenter nor the film-makers attempt to whitewash this.  Pratchett himself, although he praises the staff on hand at the death, has some serious doubts about Dignitas as an experience. Let's just say that watching this film will not leave you feeling that choosing to die is a piece of cake.

The other caution is the opposite one.  Terry Pratchett, the genial, softly-spoken host, is much more than he seems at first sight.  Arriving on the public scene in the early 80s in the guise of a writer of very silly books, he has over the years become hugely influential.  His silly books are a potent articulation of a worldview that embraces humane values along with good old-fashioned humanism and a touch of anarchy.  If the number of books he has sold is anything to go by, a lot of people find it quite attractive.  I should confess at this point that he is one of my favourite novelists.  I love his humour, sympathy, passion and cynicism.  I may not agree with his views on religion and existence but, heck, if anyone was going to convince me that belief is whatever you want it to be and that reason is supreme, then it would be him.  This master storyteller isn't just making this film for your interest. He wants to persuade you, and he has the power to do it.

So should we let him persuade us?  Is it better to return ourselves to the dust rather than wait for it to happen?  Christian attitudes to suicide are not what they were.  The earlier view of suicide apparently derives from Aquinas, who ruled, with characteristic dispassion, that suicide was the worst of all sins because there was no opportunity to repent, a view of sin which seems, to this non-expert at least, to be close to Pelagianism.  Augustine said that suicide was murder, but this hardly justifies the medieval practice of burying suicides with the unbaptised in unconsecrated ground, something which seems to be more about primitive horror and superstition than about theology. Now we are more likely to view those who take their own lives with compassion, as fellow-travellers who have found life East of Eden too much to bear. 

Modern Christian debate about suicide is more likely to be concerned with the protection of vulnerable lives.  This is where "assisted dying" comes in, and where it gets complicated.  If euthanasia was legalised, how do we make sure that only those who have genuinely given their consent are helped to die? How do we avoid a situation where the presumption is that you will he "helped" once you reach a certain stage? How do we protect the helpers from becoming, effectively, killers? Terry Pratchett doesn't fudge these questions but ultimately, for him, they are not sufficient to stop us from legalising assisted dying.  Others may be less convinced.

Navigating this moral maze is going to take a long time and a lot of hard thinking.  But at this early stage one thing we should be honest about is that it is going to happen.  If, for the time being, we stick with Pratchett's own term, "assisted dying", whether we like it or not, we have to see that the advance of medical technology makes it inevitable.  It is modern medicine, one of the benefits of living outside Eden, that has brought us to to the point where assisted dying is such a red-hot question.  It is not that hard to foresee a future in which medicine advances to the point where the moment of dying can be delayed almost indefinitely.  Whether this is such a good thing is open to question. Do we really want a future filled with ward upon ward of patients in suspended animation without end, from whose minds the spark has flown but whose bodies have no need to die?  This sounds less like Adam and more like the curse of Cain, for ever condemned to wander in the world, without hope or release. Death may be our doom, but because we are but dust, there are worse things than dying.  And, for the Christian, there is nothing to fear from death.  There is no way back to Eden, but there is another place, at the end of the journey, where there is no more death.

But the fact that it is going to happen does not absolve us from asking ourselves the hard questions about it.  For example, are we comfortable with the idea of an assisted dying industry?  It seems somehow disturbing to contemplate, and quite ironic that, for somebody, the way they choose to labour by the sweat of their brow will be to help the rest of us return to dust. On the other hand, we already have people making money out of education, residential care, public services, and of course, the funeral industry itself.  Why not then, legitimise the business of dying?  We need some sophisticated ethical thinking to cope with this and to understand what sort of society we are becoming. 

And who helps the person to die? The Dignitas model is that the patient must administer the drug themselves, in order to ensure freedom of choice.  However, the whole point of "assisted dying" is that someone assists, and the patient does not do it alone.  Can we really call this a free choice when someone is alongside, waiting and expecting you to end your life?  How do we protect both the subject and the helper from involuntary euthanasia? It is a sure bet, that if assisted dying ever becomes legally available in this country it will be only a short time before the first legal case in which someone is accused of "assisting" against the patient's will. 

Having said all that, we need to very clear that "assisted dying" does not mean the same thing as "assisted suicide". Sir Terry insists that he only wants to help those who are already on the way, and we should stick with that distinction.  One of the most hair-raising things about Dignitas is the proportion of patients who have had no terminal illness, but have gone there because they are "weary of life".  Most of these have had some physical handicap which has made them feel that their life is not worth living.  This is not assisted dying, because these people are not dying, except in the sense that we are all returning to the dust, a thought which, while true, is nothing but despair. If you knew someone who wanted to kill themselves, even someone that you loved, would you help them do it, or would you try to stop them, and hope desperately to find a way to help them hope again, to embrace life to the best of their ability? Different people will answer that differently, but I go for hope every time, the hope that we find in Jesus Christ.  My heart goes out to people who feel their life isn't worth living, but my heart and head say there's got to be a better way.

For this reason, I hope the UK will always oppose a Dignitas-style service. But Terry Pratchett has a point that needs to be taken seriously and deserves a proper debate.  We may be doomed to die, but God has given the children of Adam and Eve the tools to make this mortal world a better place to live in and, we suppose, to die in too.

9 comments:

Ray Barnes said...

Having already voiced my opinion on Mouse's post on this subject earlier today, I have little to add except that only the individual who wishes to die can really know whether for him or her there is no other alternative.
Despair you say is not the last word, I disagree, i think real despair, when all hope of any sort of bearable existence has gone is very much the 'jumping off' point.
There are people who can live without even the tiniest vestige of dignity remaining to them, but most I believe would loathe to have to endure such an existence.
If the choice to make one's own exit before the final humiliation can be made clearly and without any pressure from any other source, who are we to deny a desperately sick individual the right not to be an inanimate living corpse.

Gurdur said...

Very good, bery thoughtful and balanced post. You're definitely getting better and better at such analysis, if I may say so; I would point out a couple of things though, if I may, which were not covered.

The Christians accusing Sir Terry Pratchett of "having an agenda" appear not to understand irony, or the pot/kettle adage. As for the accusation of the BBC acting as "cheerleader", on the whole I think that's nonsense. The BBC was more than happy to cover Mother Theresa and the Indian hospice thing at the time; the BBC does news and interest stories, not whatever some group with an agenda (the anti-Pratchett Christians) want. The BBC has done hospices in the past, and a far more intelligent riposte would have been for the bishop etc. to offer to help the BBC do a new program on them -- or for the CofE to make one themselves. The CofE does have massive resources, after all, no matter how negligently neglected.

How many Christians have actually bothered talking with Pratchett? Not all that many, not at the top; but straight off I could name you one CofWales clergyman who both talks to Pratchett and also makes films - a perfect resource for the bishop in question if he wanted a film on hospices and the issues there (such as the cessation of aggressive treatment in hospices). Now wouldn't that be brilliant?

Betcha 10 pounds suchlike will never happen, and the bishop, the main Christian group bitching about the issue, and others, simply go on complaining and expecting the BBC to come round and wipe their boots.

Charlie said...

Thanks for the helpful critiques. Gurdur, I thought Michael Langrish's comment wasn't too reactionary at all. Maybe he could have been more constructive but to be honest, a programme by him wouldn't be half as good as the Pratchett one.

RevdKathy said...

I would love to live in Terry Pratchet's world where everyone was mature, wise and emotionally sound enough for this to be a good decision. But the truth is I know (and have known) many people who would choose death not because they wanted it for themselves, but because they felt they 'ought to' for the sake of children, grandchildren or a society that couldn't afford to care for them - people with chronic low-self-esteem because of a lifetime of various forms of abuse (including emotional, which is so hard to identify and therefore protect against).

I yearn for a day when there are no broken, vulnerable people who would feel subtly pressurised by things like poor palliative care, costs for nursing and residential care taking the family home, and just a general sense of personal worthlessness that they'd choose this reluctantly thinking they were being 'kind'.

We have little enough palliative care. Most of that is already paid for by charitable funding (which is something we should be ashamed of). Would that funding dry up if people could choose death instead, from a sense that “they had better do it, and decrease the surplus population”.

How long before “Permitted to choose to die” became “Expected to choose to die”?

tootallburd said...

Thank you for a very well presented post. I chose not to watch as I had seen a similar programme before and had also watched the programme Terry made about Alzheimer's in a previous broadcast.
I have great sympathy with those who wish to choose their own time of death ,understandable because it is an unknown and we are so afraid of suffering. But as someone who nursed terminally ill people for many years, including my Father, dying is not as scary as we imagine. Yes, illness is sometimes painful and unpleasant ,and we would like to avoid it, we would also like to avoid painul and unpleasant situations in life but we are often surprised by the effect on our characters,as christians we attribute this to God teaching us perseverance and patience, and terminal illness is no different. In my experience in caring for folk during ther last days and hours, God is big enough and wise enough to take us through this experience,just as we expect him to be with us in any other.
We are frightened because we are not in control, but as the old evangelist Moody said ,if you are about to travel to another country, you get out the maps and plan your journey. Perhaps as christians, we should try to talk more openly about death in our churches and support one another through shared experience of sickness. We are not immortal, we will die,we should prepare for the journey, rather than opt out. A very interesting subject which will no doubt be debated always...see you at the wedding of the Lamb sometime!

Revjean said...

Beautifully written post Charlie. I didn't see the program but you have given us enough to go on. It's a hard subject but every time we give permission for a n animal to die it's one I revisit. I am still not sure about how it could best be permitted but I am closer to death than you by quite a long way and I hope that in the event of my getting an incurable wasting desease that someone close to me would forgive my taking the easy way out. Notvsaying I would but I would like the option.

Charlie said...

Thanks all for the good comments. I should probably clarify the comment about hope (@ray). It's important that we don't condemn those who commit suicide or who want to: the only proper response to that is compassion for those who have reached that point, recognising that we all might be there one day.
My point really is that there's a difference between having compassion for someone who is suicidal, and actually helping them to do it. All suicides, by defintion, believe their life is not worth living. But sometimes those around them feel that it is: that's what I meant by helping them to find hope.

Ray Barnes said...

Thankyou Charlie for expanding on your views, and while I do see how distressing and negative the absolute determination to die may be for those around him/her, I still maintain that it is utterly impossible for anyone but the sufferer to know when the ultimate depth has been reached.
I repeat that total loss of dignity (physical, not mental) is many peoples' concept of Hell. I have known someone in such a state and would not ever accept it for myself if any other alternative were possible. The only "hope" I can see in such a situation would be for a miracle.
'Hens teeth' comes to mind.

David said...

Just a couple of thoughts.

i. As Ray says, 'total loss of dignity' is many people's idea of hell. Working with people who have massive physical and mental handicaps - who literally would die without almost-constant support - has completely thrown open my mind on this subject. They are living what, for others, is hell; but they are not finding it hellish.

ii. I've had several people (mostly people I knew fairly well) tell me they want to/think they should kill themselves. I didn't help, none of them did so, and now they are all very glad of it. That's why euthanasia should only ever even be considered in cases of incurable degenerative disease. But it's the finality of the issue that makes it so difficult to even discuss - there are no half measures.