The law of the jungle

Here I am sitting in Cornerstone (my favourite coffee shop), enjoying a peaceful cup of coffee. I've just put up on its Facebook page pictures taken at Tuesday's friendly AGM. And now I've noticed on Peter Saunders' blog that the BBC is putting out another programme this coming Tuesday about patients in a permanent vegetative state, and my heart sank, especially when I read how it's billed: "There are thought to be as many as 5000 such people in the UK. The working party will look at concerns that assessment and diagnosis of patients is not consistent across the country and will ask whether the cost of long term care is affordable to the NHS. Ann Alexander examines calls for a reform of the process to end the life of such patients where their families believe their loved one would no longer wish to be alive. The programme reveals how some hospitals appear unaware of the law and hears how the process can be lengthy and costly, putting families under further strain"(Peter's italics). As Peter comments, the old specious euphemisms. (There was rather a witty Mac cartoon in The Telegraph on the subject.)


You can see the way the argument's running. This Monday it was, "Individuals should be allowed to choose when they die (only when their lives are unbearable, of course)." Next Tuesday it will be, "Oh yes, and did we forget to mention those who can't choose? Can we afford them? No. They're very expensive to keep. So let's put them down." The argument flows from choice to non-choice so easily, from patient's decision to family's wish so seductively. "Surely they have no quality of life?" You may remember this was something I touched on in Chapter 21 of I Choose Everything, "Compassion costs":


"With the discovery that we can have some form of communication with some patients in a persistent vegetative state (deep and long-lasting unconsciousness), one of the first questions journalists asked was whether that meant one could get an answer to the question, ‘Do you want to go on living?’ They expected, I think, to be told No, and that this would solve the dilemma of keeping comatose patients expensively alive, but the surprising truth they heard was that the vast majority of ‘locked-in’ patients (perhaps the nearest one can get to a conscious vegetative state) want to stay alive. Contrary to the account in the film, Jean-Dominique Bauby, who authored The Diving Bell and the Butterfly merely by a movement of an eyelid, did not ask for his life to be ended. Just down the road from where we once lived, in Stepping Hill Hospital is a 26-year old mother locked in her body, Michelle Wheatley, who steadfastly wants to live. There is, it seems, a deep-seated instinct to stay alive, and actually to keep alive. We don’t naturally stand and do nothing when someone tries to jump under a train. Something tells us that life is precious. We know it’s good to be alive, even when it’s hard. We value life, rightly."

Who's next? I wonder. The senile who can no longer express themselves at all? Can we afford their care costs? "No doubt they'd rather be dead." I'm sure the Radio 4 programme will have people claiming that ending the lives of deeply comatose patients is only compassionate. But I'm afraid it's not compassion. It's economics, and it's the law of the jungle, the survival of the fittest.  


I reflected on Monday on the irony of Choosing to Die immediately following Springwatch. The latter is presented by jolly, jocular personalities, full of the joys of spring and new life; the former by the saturnine Mr Pratchett, presiding with melancholy solemnity over death. Where's the link? I thought. Then I remembered the pictures of the young buzzards and barn owls who consumed their weaker siblings. "It's the way of things," Chris Packham explains in lugubrious tones. "They have to survive, when their normal food runs short or when the owls can't hunt because of the rain." It's the law of the jungle, but not the law of community. We don't live in the jungle - do we? Individualism brings death; community brings life. And the law of community is love.  

Compassion isn't feeling sorry for someone or yourself;
it's staying with them through their suffering to the very end.

Commission and omission

I wrote a red-hot post about the Terry Pratchett programme yesterday, and then thought I'd see if the Guardian might like it. And so I did, and they did. This was the result: Comment is free: Choosing to Die.

Did you know that today is World Elder Abuse Awareness Day? Funnily enough, it's not been mentioned on the BBC or in the media. I only discovered this from Peter Saunders' blog, which is excellent on medical ethics and policy. In his post today he writes: "It is often argued that legalising euthanasia or assisted suicide would be a recipe for elder abuse. Given the vulnerability of many older people, who already feel themselves to be a financial, emotional or care burden on others, this is a powerful reason for not changing the law. 
"There are too many people already who have an interest, financial or otherwise, in an older person’s death. Let’s not give them any encouragement. And let’s work to honour, protect and uphold the older members of our community." 

Dr Peter Saunders

Peter Saunders is one of our nation's doughtiest defenders of human life. What the media world prefers to forget he constantly reminds us of. He is often in the front line of contumely and personal animosity. For example, I listened to a rather shrill Margo MacDonald accusing him of scuppering her euthanasia bill in the Scottish Parliament on the Nolan programme on Sunday night, as part of the BBC's three-day Pratchett Fest.

The MNDA had asked if I'd like to participate in the discussion, but as I don't trust my voice under stress at that time of night, I instead sent this email, which Stephen Nolan read out. It said it better than I'd have been able to, and expressed the widespread feeling that the BBC is really not presenting a balanced viewpoint on matters of life and death:
"I have PLS (Primary Lateral Sclerosis), a rare form of MND. My prognosis is slow but inevitable. I'm not exactly looking forward to it, but neither am I frightened by it.  I understand you're discussing Terry Pratchett's TV programme broadcast tomorrow.

"As my voice is even more rubbish at this time of night than usual, I'm just emailing.

"Obviously I've not seen the programme, and so I can't comment on specifics.  But I'm concerned about it because it sounds as if it will be one-sided with a gesture towards another view. For one thing it's presented by Terry Pratchett whose views are well known after his Dimbleby lecture. He's known to be campaigning for the legalisation of assisted dying, or suicide.  And it's been widely trailed that it will show a death of someone with MND in the Dignitas facility in Zurich in favourable terms. This could be regarded as encouraging others to do the same.

"I understand that the BBC admits this is not an unbiased programme. I'm all for a debate on the subject, but I'd like to know if the BBC has plans for a programme presented by an opponent of legalising assisted suicide. Otherwise it seems it's not being impartial, which it surely should be.

"The large majority of disabled people in a recent Comres poll indicated they were opposed to legalising assisted dying. The reason is because we fear pressure being put on us as we are costly and less valuable ("a burden").  Were assisted suicide to be legalised, no doubt its proponents would argue under great safeguards, experience has shown in places like Holland that involuntary termination of life follows - and the reason seems to me that life is no longer considered inviolable. 

"Terry Pratchett's mantra is "My life, my death, my choice". The trouble is that my choice has consequences for others - health professionals, carers, the vulnerable and the rest of society. It's taken our society a long time to stop even the state taking life. I don't want to return to the days when life is ours for the taking."

Commiserations - or celebrations

There's a great temptation if you have a degenerative condition to feel sorry for yourself. Or for your carer to feel sorry for him/herself, as usually they're your husband or wife. We were at two very different events on Saturday: one was an MNDA Coffee Morning across the village at our friends', John and Jean; the other was a ruby wedding lunch for some old friends, David and Margaret. You would have thought that the atmosphere was quite different in the morning and afternoon - one subdued and the other up-beat.

However not so. As well as friends and neighbours, there were four of us there who had MND at various points of progression, Jean herself, David the herb farmer, Maria the shopper, and me. Three of us were out in the garden, and, yes, we did talk about our frustrations and the lessons we'd learned, but it wasn't a moany sort of conversation. It was companionable, and at times jokey. One of us commented that she'd learned humility and patience; another that he'd learned impatience! I think we might have thinking about the same phenomenon: we've been discovering how impatient we are. I'm lucky as I'm the only one whose upper motor neurone disorder has so far left my hands and arms intact. But even that leaves me frustrated.

One of us talked about the dark times he experienced on occasions, but also of the enjoyment he derived from friends' visits. We could all identify with that. John and Jean's house was buzzing for two and a half hours, full of conversation and full of life - and in our corner with a lot of laughter.

So it wasn't all that different from the 40th wedding anniversary party on our friends' farm. Their best man and four bridesmaids were all there. Friends had come from both ends of the country. The marquee buzzed with conversation; the groom's speech was jokey and serious. And of course the food was excellent.

Life is for celebrating, not for moaning about. There's a very positive article by Geoff Morris, who has MS which you can read on line, about the depressing Terry Pratchett programme due to be shown tomorrow evening. I think he has seen a preview and knows what he's talking about. He describes it as a Saccharine picture of suicide. It raises the very real issue of whether the film encourages suicide - which is of course against the law, against the royal law of love, and against life which should be cherished as the most precious of gifts. And of course it raises the questions of what the BBC is up to showing it, and when it will show the opposite as a balance.

Friday Night Theology

I hope Marijke won't mind me reproducing this article from "Friday Night Theology", which I loved.

Shalom in the home

10 June 2011

Three years ago, my dad passed away following a long illness. He died in the house he built, overlooking the trees he planted, cared for by the doctor he mentored and the family he raised. Collectively we did well in honouring him in the final stage of life. Family, friends, and carers - each contributing to the best of their ability. Peace in the house.  

Last weekend, the author Diane Athill described her care home: "This place is a dream. I'd been here for about a week and I thought: 'What is it about this place that's so marvellous?' And I realised, it is goodness - an extraordinary feeling of goodness. None of these people are anything but genuinely kind. That's the secret of a decent place."  

There's been little peace recently as far as the topic of caring for the elderly is concerned. A report earlier this year on healthcare revealed an attitude - both personal and institutional - which fails to recognise the humanity and individuality of the elderly and to respond to them with sensitivity, compassion and professionalism. A survey of residential care homes and providers of outreach services found that older people face isolation, a lack of community and funding. The drastic public sector cuts and disastrous manoeuvres in privatisationcontribute to an increased sense of vulnerability in the already vulnerable.  

In his final book The Radical Disciple, John Stott reflects on the final part of life: "We come into this world totally dependent on the love, care and protection of others. We go through a phase of life when other people depend on us. And most of us will go out of this world totally dependent on the love and care of others… It is part of the design, part of the physical nature which God has given us."  

We all have a lot to gain in the season of parent-care, as Dr Emily Ackerman explores in A Time to Care. The transformative element does not merely concern our heart and home. It is wider than that. In ancient Greece, the oikos referred to the house and everything included, such as extended family, slaves and farmland. Nomos means act, law, or principle. The Ancient Greeks first combined these two roots to form oikonomia. Eventually, the word 'economy' was born, which literally means "the principles to maintain our house". Whether that "house" is government or family is relative.  

There is a Christian imperative to develop good practice and challenge political and entrepreneurial malpractice. For poor care for the elderly is not only a tragedy, but also a scandal. Bishops have rightly called for rightdecisions and a new framework of trust. We need a vision and ardent advocacy concerning our collective 'house-keeping'. And in view of the ageing society, we need a long-term commitment. Demographic projections indicate there will be more than 11 million people over the age of 65 within 10 years. 

God's word gives us a glimpse of shalom in the community: "Once again men and women of ripe old age will sit in the streets of Jerusalem, each of them with cane in hand because of their age. The city streets will be filled with boys and girls playing there."   The imagery is one of communal wellbeing, shalom. Collectively - government, service providers, families and community - we need to do well.  

And, as far as the household of faith is concerned, caring for, and advocating on behalf of the elderly is an intrinsic part of radical discipleship.

Marijke Hoek, coordinator Forum for Change

An afternoon with friends

On Wednesday afternoon the local MND Association branch visited Aston Pottery for a demonstration and then for tea. These are really good afternoons when those of us with MND and friends and families spend time together.

Watching the demonstration

Although it was windy, the rain held off and from time to time the sun came out. Aston Pottery is near Witney and produces its unique brand of tableware, and also has an Aladdin's cave of a gift shop and a big beautiful café. The 18 of us started with the pottery (I believe it's technically known as slipware) demonstration given by Marian, one of the potters. She showed us the processes from pouring to completion - well, not all of them, I seem to remember that there are 27 separate processes in all, taking over two days. She was, I must say, an excellent teacher - well organised, expert and enthusiastic about her subject. I certainly ended with a great appreciation for the skill of the potters and decorators and the vision behind the whole enterprise.

Marian at work

It's amazing how split-second some of the timings need to be: for example, too short and the teapot handle is hollow, too long and the spout is solid. And there's no mass-production here. It all depends on the human factor. I was especially impressed by the glazing process, which is dipping the article into a suspension of four minerals for a few seconds. As it dries the design is completely covered in the creamy deposit. Only after the final firing at 1100+˚C does the deposited suspension melt into a micro-layer of glass.

After the wonders of potting, we proceeded to the joys of eating some of the locally made cakes and having tea from, of course, Aston pottery.

This is always the best part of such afternoons, when you sit and talk (or just smile) with your friends, and enjoy what you might call fellowship. In one way it's tinged with sadness, as you're aware of friends who have died since we began going. But there's also that great optimism and humour which is oddly a mark of the Association members. Anyway the slabs of cake were vast - and delicious.

Anne and Rachael facing us, with the Durkins

In the café

I forgot to mention that I'd been to the MND Clinic in Oxford on Monday morning, to see my new consultant, Kevin Talbot. There I'd been greeted by Anne, the Association visitor, and then was seen by Rachael Marsden, the clinic coordinator, who gave me a peak-flow

breath test and a quick interview, before I went in to see Professor Talbot. He agreed with Dr Donaghy's diagnosis of PLS (where the upper motor neurones are affected). He had a student there, which was interesting as he explained my symptoms to her. It's an excellent set-up.

It was nice seeing Anne and Rachael again at Aston on Wednesday afternoon. It feels like integrated care.

The good bunny

I was reminded of this true incident by recent news stories. Early one summer morning in 1976 a young couple was going down from Watford to the Isle of Wight. On the A3 road near Micheldever, the two-door beige Morris Minor they'd been conned into buying by a very nice (apparently) man started to steam. As they had a sleeping baby in a carry-cot on the back seat, they pulled over to the edge of the road. They hurriedly took the carry-cot out of the car, and then the young husband opened the bonnet. The engine was scalding hot. The radiator cap was fizzing like an angry pressure-cooker. Using a cloth, he gradually released the cap. The radiator was completely empty.

Of course, this was in the days before mobile phones. There weren't any buildings in sight. Vehicles occasionally sped past, but it was very early. They were bound to miss the ferry. Then a Ford Escort passed them, stopped up the road and reversed. An attractive woman of about their age, casually dressed, got out and walked back. "Can I help?" she asked. Having explained their predicament, she told them there was a garage a mile down the road and offered to take one of them to it. They gratefully accepted the offer. Leaving his wife looking after the baby, the husband went with her and got a container of water, and was then driven back to their car. They thanked their rescuer, and as she drove off, the husband said to the wife, "Did you see the badge on the back of her car?" She hadn't. It looked like this:

 

"You know," he said, "I think we've been rescued by a bunny girl." Presumably she'd been working till the early hours in Park Lane. Now, then, as today, bunnies were despised by men as objects of exploitation and fantasy, and by feminists as willing accomplices of male exploitation, and by respectable people as merely immoral. 

I happen to know this story's true because Jane and I were the couple, and the baby was our new daughter. We actually made the Isle of Wight ferry, and reached Jane's parents safe and sound. I bought some radiator additive to seal the hole - which helped but didn't ultimately solve the problem. So eventually we sold our liability. We never saw our rescuer again. I'd like to think she might read this, and hear me say, "Thank you."

I can't say I applaud the reopening of the Playboy Club in Mayfair this month after 30 years. I could understand Slut-walk marcher Bea Campbell's ire at bunnies as symptomatic of male exploitation: "dressing as Hugh Hefner wants" (Today programme). However, I still reflect, "Who do you suppose was neighbour to that couple stranded on the A3?"

Here we go again, Aunty

Summer must be a-coming in. The season of media-created news. Last night I saw a trailer for the BBC's latest salvo in their campaign for the legalisation of euthanasia, fronted by millionaire author Terry Pratchett, about people wanting to decide when to die. We've already been told that it will include a scene in which a man with Motor Neurone Disease is assisted in committing suicide at - yes, you've guessed it - the European euthanasia capital, Zurich's Dignitas facility. This is appears in direct contravention of the World Health Organisation's guidelines about media portrayal of suicide: "Don’t publish photographs or suicide notes. Don’t report specific details of the method used. Don’t give simplistic reasons. Don’t glorify or sensationalize suicide."   


There's an excellent comment in the Christian Medical Comment on the subject, which I do urge you to read. Peter Saunders asks questions which really do need answering, about the impartiality of the BBC on this issue. To balance the repeated programmes advocating and sympathetic to assisted suicide, where are the equivalent about hospice and palliative care? Where are the programmes about the people with terminal conditions who have chosen to live rather than take their lives? Where are the programmes about Matt Hampson, Alison Davies, Kate Allatt, Katherine Araniello? Where are the programmes about disabled people's fears about the consequences of legalisation? Where was the feature about Scope's survey - see my post - ?  


What do we do about the broadcasting medium which we fund through the licence fee - when it doesn't follow even its own guidelines? What does "public interest" mean? Does it mean titillating the public's interest-buds as the tabloids argue? Or does it mean acting in the public's best interests?


However, let me acknowledge a good public interest programme on Radio 5 Live last night: Depression in cricket. It includes Marcus Trescothick talking about his depression, and Matthew Hoggard - and Kevin Saxelby talking about his brother, Mark, who committed suicide. A thoughtful programme.