Court discussions of life and death

I know it won't be the end of the story, but I was pleased, if not surprised, on Wednesday that the Supreme Court dismissed the appeals of Paul Lamb and Jane Nicklinson and upheld the DPP's appeal against "Martin's" demand for more definition about assisted suicide. Having met him I am aware of how painful and frustrating Tony Nicklinson's life had become, but demanding an effective change in the law to enable doctors to end life, in other words to legalise euthanasia, would be in my view to open the door to a world of danger to vulnerable people of all ages.

The spin put on the verdict by Dignity in Dying (formerly the Voluntary Euthanasia Society), I imagine, was that it was all about the Court saying Parliament must get on and clarify the issue (which 2 of the 9 judges said ought to be done now, 3 out of 9 said sometime, and 4 disagreed). After all Parliament has discussed it a number of times in the last ten years. In truth the judgement upheld the law as it now stands. However Lord Falconer is putting forward the second reading of a bill to legalise assisted suicide for terminally ill people on 18th July in the House of Lords. That bill would not help people in Paul Lamb and the late Tony Nicklinson's situations, as it would apply only to people with a confirmed prognosis of less than six months, but its champions are keen on it partly because it would erode the principle of the sanctity of life enshrined in law.

Recently I was asked to write a short piece for a photographic exhibition. This what I wrote.

'“Everyone knows they’re going to die one day

 but society tries hard to duck it

 so we need stubborn truth-tellers who will sparkle and shout

before they kick the champagne bucket.”

 (Kate Fox on Kate Granger)

I imagine almost everyone who receives a diagnosis of a 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 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.

The campaign for assisted dying/suicide feeds on and fuels our fear – our natural fear of pain, of dying, of the unknown. It destroys hope and trust. And that is toxic to society.

The disabled, chronically ill and the elderly experience another fear – of being regarded as disposable burdens. Of course there aren’t yet calls for us to be 'put down', but it's not hard to see how that might be offered as a 'treatment' – saving medical and care costs.

Don't mistake me. MND, as a newly diagnosed friend recently observed to me, is a 'bugger', as are other 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, the turning point for the 16-year old Pi Patel, alone with the terrifying Bengal tiger, 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 befriend it that he discovers his ultimately successful survival strategy. 'And so it came to be: Plan Number Seven: Keep Him Alive.'

In her blog Dr Kate Granger addresses her advanced cancer. “Being positive though, through tear-filled eyes there are also some exciting things I really want to live for on the horizon. I’m not going to let you stop me achieving those goals.”

Call us “people with MND”, not “sufferers” or “patients”. We’re not victims. There is still life after diagnosis, however short or long. It’s still an adventure. We’re not dead yet.'

In the public eye

I really don't enjoy being in the public eye, but Jane and I were on Channel 5's evening news tonight: http://www.youtube.com/watch?v=227RAHqVDiA#t=12. We'd been interviewed about assisted suicide, which is in the UK news again because there's an appeal case before the Supreme Court basically seeking to legalise the practice for some. It's really a continuation of the Tony Nicklinson and Paul Lamb case, arguing for doctors killing an incapable terminally ill patient who wants to die because of "necessity".

The filming took about three hours - the clip they edited (well, I must say) played for less than two minutes. I hope it provided some evidence that not everyone with a "terminal condition" and very few disabled people want euthanasia legalised. I think Channel 5 got on to us because of an item we'd done for Yahoo News a couple of months ago which came on line last week. You can see Jane and me and the dogs here: Terminally ill man on why life is our greatest gift (Yahoo). (Jess has since been put down.)

There are many reasons why relaxing our laws to allow even a limited intentional taking of life is a bad idea. But they of course lack the emotional punch and sentimental appeal of horror stories. For myself I am always slightly suspicious of highly coloured accounts of personal suffering. They seem to me to be attempts to persuade by-passing the intellect. Of course the end of life is an emotional subject, and emotion should play its part, but if we abandon reasoned discussion we make ourselves prey to all kinds of prejudice and irrationality.

So what are my reasons for devoutly hoping that the nine Supreme Court judge reject this latest assault on the sanctity of life? Here are some notes.

Unintended consequences

I don't suppose the legislators who, acting from the best of motives, brought in the Abortion Law foresaw that it would become a charter for disposing of many thousands of babies with Down's Syndrome or a cleft palate.

Hard cases

Make bad laws. Our system combines case law and legislation. The place for considering ethical issues as hard and complex as this is Parliament, not the law courts.

Compassion?

Yes, I have compassion for people in pain and disabled and terminally ill. Tony Nicklinson said to me the difference between himself and me was that I could commit suicide if I wanted. It's not actually true. But compassion doesn't really mean killing someone. It means sticking with them through pain. It means relieving their symptoms and minimising their pain. It means good palliative care.

Prof Hawking's "pet" theory ("You would let your dog suffer") is one quarter right, three quarters wrong. We had Jess put down because her life was miserable, but also because she became doubly incontinent, was likely to incur costly vet's bills, was no longer much fun to have around. 3 of 4 reasons were to do with our discomfort, not hers.

Defence of the vulnerable

I'm not concerned for myself - although I don't look forward to the process of dying - but I am concerned for the vulnerable, the disabled who don't have a voice, the depressed, for the elderly who are at risk through dementia or frailty - for those who are increasingly regarded as a burden on their families, on society, on our nation's resources. It's those people our laws should protect. The court case seems to me to be about people who are far from vulnerable. They actually are strong-willed, if desperate, and well supported.

Hippocratic oath v necessity

As I understand it, one request in this case is for health professionals (such as doctors and carers) to be allowed to take someone's life or to assist in their suicide: so for example allowing my doctor to administer a lethal injection at my request. That opens the door to doctors ceasing to be healers and carers, and becoming dealers in death. That is one of the most valuable safeguards in the DPP's Guidelines on Prosecution in respect of Assisted Dying. I guess that's why the BMA is against a change in the law.

As events proved, there was no necessity for a doctor to end Tony Nicklinson's life. He could refuse treatment and ask for only symptom control and pain relief.

Discriminatory

All of us may refuse treatment: none of us may demand treatment. To allow one class - ie. paralysed - to demand would discriminate against others and set a precedent for any to demand "treatment" as we wished.

Justice and mercy

The present Suicide Act protects the absolute primacy of life - but allows room for mercy with the discretion of prosecutor, judge and jury. It has worked, and it isn't broken. Don't try and change it.

Fear

The disabled fear a change in the law. We feel at risk. We don't want to be endangered.

Many ageing people fear it. The majority of elder abuse takes place in the home or in care homes.

The campaign for euthanasia encourages fear. It feeds on our natural fear of pain, of dying and of the unknown. And it fuels that fear.

Fear is toxic to a healthy society.

Rights

Rights only come with responsibilities. My right to life, or to death, can't be isolated. If my demanding the right to die endangers the lives of others, then my responsibility to them trumps my choice.

'My life'

Actually life isn't our possession. We are part of life.

Religion

Everyone has a philosophy of life. Mine informs my view, just as anyone else's affects theirs. However, my objections are pragmatic. I'm concerned about the consequences of eroding the law for our society. I'm concerned about cheapening life - reducing it to a commodity. I'm concerned about protecting the vulnerable. I don't want our country to go the way of Belgium, where they're moving towards euthanising children, or of Holland when we could face 13,000 assisted suicides a year. I'm concerned that we never see euthanasia as an easy way to reduce our NHS and care costs.

The Supreme Court

During the week our new 'Supreme Court' incurred the wrath of consumer groups by ruling in favour of the banks about overdraft charges. The court ruled that the Office of Fair Trading didn't have the power to investigate banks charging for unauthorised overdrafts. That means that they can go on charging - and won't have to pay back the £billions they've made from it. Personally that doesn't seem unreasonable to me. I don't quite see why savers should subsidise spenders. (I was going to say spendthrifts; but that wouldn't be fair on many who go into the red.)

Meanwhile Gary McKinnon's hope not to be extradited to the US for hacking into the Pentagon's computer in his hunt for UFOs has been disappointed with the Home Secretary's refusal to block the extradition. It may be that the extradition treaty is a bit unequal, but I don't believe he has less prospect of a fair trial over there than here. I hope that the judges listened to the Chief Rabbi's thought for the day on Friday (http://downloads.bbc.co.uk/podcasts/radio4/thought/thought_20091127-1046a.mp3). 'In the long run a system must be fair if it is to survive' was how he ended. He was talking about justice. He said there's only one verse in the Hebrew Bible which tells us the reason for which God chose Abraham, from whom Judaism, Christianity and Islam all trace their belief in one God - which is Genesis 18.19 'For I know him, that he will command his children and his household after him, and they shall keep the way of the LORD, to do justice and judgment'. He said that the word judgment ('mishpat') means legal justice, but the word 'sedaqa' translated in the AV as 'justice' in fact has no exact English equivalent. It combines both justice AND charity. Another translation says 'righteousness', but that sounds a bit religious to me. It reminds me of Portia's speech in The Merchant of Venice,which I've mentioned before: 'The quality of mercy is not strained...It is an attribute to God himself;
And earthly power doth then show likest God's
When mercy seasons justice.' I hope that his Asperger's Syndrome is taken into account whereever his trial takes place, that justice is tempered with mercy.

Today is Advent Sunday. Part of the collect (prayer) for today goes: 'that in the last day, when he shall come again in his glorious Majesty, to judge both the quick and the dead, we may rise to the life immortal'. That must be the ultimate Supreme Court. It's good news that 'he' is Jesus Christ, who perfectly combines sedaqa and mishpat. The best thing one can do is to throw oneself on His mercy, I reckon.