"Silk" on assisted dying

Last night I watched Monday's episode of BBC1's Silk. I much enjoy this series with its combination of courtroom and human drama. The two rival/colleague QCs are Martha Costello and Clive Reader; the machiavellian head clerk of chambers is Billy Lamb (who has prostrate cancer). This last episode was based on the "contentious" theme of assisted suicide. I thought it was well done with the exception of the rather cartoon portrayal of the Catholic counsellor. It was a bit too easy in my view to make the family involved Catholics.

Maxine Peake and Rupert Penry-Jones

The case centred on seventeen-year old, Jo, who had been injured and left tetraplegic in a car crash. She is killed by a lethal combination of her drugs, accelerated with whisky. Her mother is in court for her murder, having rung the police just after the event and confessed. Clive Reader prosecutes for the Crown; Martha Costello defends. In court, Reader gives a fair account of the arguments against euthanasia, primarily to protect the vulnerable (the disabled, the elderly, the painfully ill). Costello's defence is to argue that Sheila the mother was acting at her daughter's request. Naturally the emotional weight was on her side. That is the role that Maxine Peake (Costello) is consistently given - the humane face of the law. She's the one who tugs at the heart strings, as well as having a razor sharp brain. And it's the easy side of the argument. The arguments against seem hard-headed and cold by comparison.

Until, that is, one hears the real news from Belgium that its parliament has approved voluntary euthanasia for terminally ill children of any age - with parental consent and after counselling. I have recently read this comment: "We all know about very ill children and adults who have had to endure extreme weakness,  debilitation and are nearing the end of their lives, for whom there are no quick and easy answers. Should ending their life be an option? There are some who think so, and continue to campaign for 'death with dignity' whilst dismissing... concern about 'a slippery slope' to full-blown euthanasia. It is only 12 years since Belgium legalised euthanasia for adults. They know that British society is not ready to legalise euthanasia - so they are adopting a 'softly softly' approach, starting with 'assisted dying' for terminally ill patients able to make a reasoned decision" (Lyndon Bowring). It won't be long before we hear about Margot McDonald and Lord Falconer promoting bills for just that in the Scottish and Westminster parliaments respectively.

Silk's resolution to the legal conundrum was rather neat. In my view it was a vindication of the validity of the law as it stands. Had the mother been responsible for her daughter's death with nothing but her own word that it was her daughter's wish, she could well have been found guilty of murder. As it transpired, she had not been involved; Jo's youngest brother had carried out the girl's instructions and his mother lies to protect him. And the Crown Prosecution Service decided not to take any further action. It illustrated what I call the justice and mercy of the present law. Justice demands that life should protected and that the taking of life should prevented. Mercy takes motive into account; hence the guidelines for prosecution allow for compassion as a mitigation. Ending someone's life must never be a matter of economics or convenience. The reaction of the two QCs to the case was one not of triumph or defeat but of emotional  wreckage. Nothing is more shocking than the taking of life, whatever the reason.

Talking of dying

Yesterday Jane and I went to Woodley near Reading - No, let me start one or two steps back from there. I'm a great admirer of Dr Kate Granger. She is one brave person, though she wouldn't bless me for saying so! Here's what she wrote about herself:
"I am a 31 year old Elderly Medicine Registrar working in Yorkshire in the UK. Nothing unusual about that really. But I am also a cancer patient, a terminally ill one with a very rare and aggressive form of sarcoma. On my blog I muse about current issues especially relating to end of life care, communication and patient centredness. I also write about my experiences as I approach the end of my life.

"I have written 2 books, The Other Side and The Bright Side. We sell these with all profits being donated to the Yorkshire Cancer Centre Appeal in Leeds. See my website for more details – http://www.theothersidestory.co.uk". 

I challenge you to read her latest blog post without being moved and inspired (apologies again, Kate!): Dear Cancer Part 2. Anyway it was while researching some talks that I came across her comments about the Liverpool Care Pathway, which was rubbished inter al by the Daily Mail (no surprise there!). Her comments last November in contrast to the media hysteria were unsurprisingly extremely well informed and balanced. For example, "When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well informed, emotionally supported relatives, making the grieving process that little bit easier." 

Sue Ryder House, Nettlebed

So that was step 1. Then Jane and I went to an MNDA tea put on by the local Sue Ryder Hospice at Nettlebed (once the home of none other than Ian Fleming) where our hostess, Lynn Brooks, mentioned a consultation afternoon being put for the Leadership Alliance for the Care of Dying People by Sue Ryder, in response to Lady Neuberger's More Care Less Pathway report which led in July to the Health Minister's scrapping the Liverpool Care Pathway and looking for an alternative approach. Was anyone interested? We were - and so we applied and got the last two places.  Step 2.

So, yesterday afternoon we drove across the Downs and along the motorway to Reading. Step 3. The Alliance was set up, I think, by a palliative care consultant in Oxford in order to produce a constructive way forward post-Neuberger, and it draws together parties from all over the health sector, from the Royal Colleges and NHS to those involved specifically in terminal care such as hospices. There were about 56 of us there on seven tables. Only a few of us were current "service users" and carers like Jane and me, though in the end all of us will be. It was an unusual experience being in a room where everyone was at ease talking about death and dying, but not a bad or morbid one - rather like the increasingly popular Death Cafés, I imagine. In fact one of the common themes that emerged from every table was the importance of communication, between the professionals and the patients (and if appropriate their families). I tend to agree with Kate Granger's ideal that a palliative care specialist should be present when someone is given a terminal diagnosis, or if not then at the next appointment. 

As a former teacher, I frankly think that the process of dying should find a place on the secondary curriculum. I'm not sure where it would fit in! Perhaps citizenship. Talking about what will happen to everyone seems a better use of time than debating the pros and cons of euthanasia, which only serves to increase fear of dying. Far better to break the taboo we nurture concerning death. Isn't time we were open about this great fact of life, rather than be scared stiff of it?

I imagine almost everyone who receives a diagnosis of a terminal or potentially terminal condition experiences some moments of fear.  I was no exception.  I was diagnosed with Motor Neurone Disease in the same year that Diane Pretty had died in the publicity of her court cases.  I was under no illusion as to what MND meant.  I knew it was life-limiting and life-ending.  In particular I had some fears about the manner of dying I could expect.  These were fuelled by the campaign surrounding such people as Ms Pretty, which portrays those with similar conditions as 'sufferers' and 'victims' and drip-feeds horror stories to the media - with the effect of exacerbating public fear.  

Don't mistake me.  MND, as a newly diagnosed friend recently observed to me, is a 'bugger', as are most neurological and terminal diseases.  I suppose, for that matter, most dying is too - which of course none of us avoid. 

In Yann Martel's remarkable novel, The Life of Pi, which I'm reading at the moment, the turning point for the 16-year old Pi Patel, alone with the terrifying Bengal tiger named in error, Richard Parker, on a lifeboat in the Pacific Ocean comes with a discovery. 
'I must say a word about fear.  It is life's only true opponent.  Only fear can defeat life.  It is a clever, treacherous adversary, how well I know.  It has no decency, respects no law or convention, shows no mercy.  It goes for your weakest spot, which it finds with unerring ease.  It begins with your mind, always….
'… Every part of you, in the manner most suited to it, falls apart.  Only your eyes work well.  They always pay proper attention to fear.
'Quickly you make rash decisions.  You dismiss your last allies: hope and trust.  There, you've defeated yourself.  Fear, which is but an impression, has triumphed over you' (chapter 56).  It's as he accepts the tiger's presence, loses his fear and starts to face it up and almost to befriend it that he discovers his ultimately successful survival strategy. 'And so it came to be: Plan Number Seven: Keep Him Alive.'

(My beef with the campaign for assisted dying/suicide is that it feeds on and fuels people's fear - our natural fear of pain, of dying, of the unknown.  We're told stories to increase our fear of the big beast, death. And that is toxic to society. We lose our trust and our hope. We run scared of dying and lose our humanity.)

The great joy for me yesterday was seeing in the flesh what the media seems to conceal rather than celebrate: the whole range of people from paramedics, nurses and doctors, to managers, befrienders and social carers whose ambition was to ensure that the journey towards death is neither solitary nor fearful. Talking can never remove the beast, but it can tame it. And that's why we should not be afraid to utter the very words, "death" and "dying". There's an excellent organisation called "Dying Matters" - no more concerned with the euthanasia debate than was yesterday's workshop, but working to break our society's unhealthy paralysing terror of death. It's neither sectarian nor political. It can be found at http://dyingmatters.org/. It seeks to promote discussion and public acceptance of dying.

This is a time of year when euphemisms such as "passing" or "becoming another star in the sky" seem particularly inappropriate. We remember those who faced the raw reality of death in war. Death is no less real in peacetime. Let's face it, not run from it. Ultimately Pi Patel survives and Richard Parker disappears, never to be seen again.


As we drove home, the wispy clouds were starting to catch pink hues from the setting sun, and it was nearly dark as we arrived home. 

Have you heard...?

the one about swine 'flu:
I rang the swine flu hotline today, but all I got was crackling.

And the one about life:
Life is a sexually transmitted disease with a terminal outcome.

I'm grateful to a research doctor for the first and a retired professor for the second.

Friends (and foes)

I'm aware that you may get the impression from this blog that having MND is not much more than an inconvenience with a possibly unpleasant end. You need to remember that my variation is Primary Lateral Sclerosis, the sort that affects the upper motor neurons (i.e. in the head, as opposed to the spine, I think), which is one of the slowest types. One person I know who has it reckoned it just prolonged the agony, but the truth is that it also allows you longer to enjoy life. So I'm grateful to a lovely widow who commented on my last but one post, Jane, who provided the link to the blog which she and her husband, Richard, kept in the 21 months between his diagnosis of pulmonary onset ALS and his death. (It's www.linketty.zoomshare.com .) That gives you more of a measure of the potency of MND at its most rampant.

Someone else whom I've I had contact with recently is Jerry Lyons. With Del Deanus he's co-writing Del's story. Del was a promising football player with Spurs Youth, and went on to management. A couple of years ago, he was diagnosed with MND, and he's just begun a blog (Visit http://delsstory.blogspot.com/ to read it. But please don't stop reading mine!)

We were a bit worried after my last sunny post, as Jane had seen no sign of our friendly goldfish. We didn't think a heron would have found them that quickly, but feared that some predatory newt lurking in the pond's muddy depths had finished them off, for breakfast, dinner and tea. I know that they have a predilection for tadpoles. Nature can be ruthless. The garden is alive with the sounds of birds, including baby sparrows in the next door garage roof and starlings under our tiles. One morning it was full of alarm calls as the stealth bomber sparrow hawk swooped in on a raid. It was seen off by an angry blackbird, but I fully expect to see an unfortunate ball of feathers seized before my eyes while I sit at the laptop in the dining room one of these days.

Oh yes, I almost forgot. At teatime yesterday Bryan, home to sort out my laptop's airport, inspected the pond carefully and eventually found six happy goldfish. Panic over!