Where is love?

Mike Chapman 'Christ Child'

 

HOLY INNOCENTS DAY

The first words we were taught in Latin
Were amo, amas, amat, amamus, amatis, amant:
Verb, transitive; meaning love.
Outside the church on Trafalgar Square
Stands a great block of Portland Stone
With a carved new-born baby soft and smooth
Lying not in Christmas card manger
But on a rough bed of rock.

Round the plinth is inscribed:
‘In the beginning was the word…
And the word became flesh
And dwelt among us’.
Look once more at the naked baby
His cord has not even been cut
He lies without defences and alone
Can this truly be the Word made flesh?

Naked new borns lie in Mariupol’s wreckage
Mothers weep for their Infants in al-Shifa
With ash grey dust their only shroud
‘What kind of a country is afraid of hospitals
and maternity wards and destroys them?’
Is it leaders lusting to unleash
Their fear full fury while they can?
Wounded they see not neighbour but stranger,

Not brother but alien, animal, pest
To be butchered, mortared, missiled from our land.
We are the chosen inhabitants of this place
Pity we can’t afford, we dare not open our eyes
To the mothers drowning in agony
To children scraping away the rubble
Wailing for lost baby brother Isa
Loved in Gaza’s hell. Are you here, Emmanuel?

28th December 2023

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.

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. 

They really aren't

OK, so temperamental televisions channels are a minor inconvenience, but some things which are portrayed as "simple" are far more significant. You could say they're a matter of life and death. I've met Katherine Araniello a couple of times. She's a conceptual artist, and she's thoroughly disabled. She appeared on 4Thought TV in the summer, talking about suicide.

Today she wrote a thought-provoking extended comment on Facebook, to which I responded:

Assisted suicide – The continual debate

What concerns me is the constant bombardment of how terrible it is if one does become disabled or they have a terminal illness and the negative imagery this places on anyone who isn't fit and healthy. People who are living with disabilities and terminal illness are in fear of their own lives being ended prematurely when they go into hospital because of the viewpoint that someone who is so ill or so physically dependent on others cannot possibly want to live – There are cases in which disabled/terminally ill people are in hospital and the only reference to them is the function of their body – e.g. it may be that they are on full-time ventilation – they require 24-hour assistance – and it is these people who are rendered as having no quality of life. There are cases in which such lives have been taken over by the medical world who believe that it is fair to not resuscitate someone who is so ill or disabled. These are the facts and these are the fears and these are the realities of the 21st-century that we are living in –

Earlier Katherine had made a comment about fascism, and I began my response from there:

• • Michael Wenham 

    Interesting, isn't it, that our society dislikes "travellers" - one of Hitler's target-groups? And I gather there are attempts to exclude the holocaust from history syllabuses for fear of "offence". I've just watched "Band of Brothers" withits horrific concentration camp scene. "Ah, but we could never get to that HERE!" Well, it began in Germany with doctors dispensing with the absolute sanctity of life. The phrase "the right to death has a sinister history: it recalls vividly the entire reasonableness of the successful campaign in Germany during the 1910s through to the 20s and 30s to convince the medical profession that “assisted dying” or “sterbehilfe” for those with an impaired “quality of life” (to use a modern expression which also has sinister historical overtones) as morally acceptable: a book published 13 years before Hitler took power, The Permission to Destroy Life Unworthy of Life, Binding and Hoche’s Die Freigabe der Vernichtung Lebensunwerten Lebens, together with Jost’s Das Recht auf den Tod (The Right to Death) [remember Sir Terry’s “right to die"?] had a huge influence on the German medical profession and without doubt paved the way for the Nazi euthanasia programme" (William Oddie). It probably wouldn't get that far here, but we should be warned that there are dangers in the idea of compassion. That's how the Nazis portrayed euthanasia.

    
    
  • But you're right, Katherine, that there is a sustained negative portrayal of disability and dependence, which is both insulting, untrue and creates an atmosphere of fear. Actually we ARE ALL dependent, interdependent, and it's NOT degrading or demeaning to need help. We need to embrace that reality, not run away from it and try to scare others into running away too. "No man is an island" is true. You and I are pretty much 100% dependent on others, but your life is amazingly fulfilled, it seems to me, frustrating but fulfilled.
    
    The mantras of "compassion" and "my right" sound simple, but they aren't. Things never are; they really aren't!

Hi ho! Hi ho! It's off to ... I go!

Tomorrow I'm off to the dentist for the second time within six days.  I'm not worried about it - really not - because of my experience last time. I've waxed lyrical before about the virtues of this NHS provision of 'special needs' dentistry. There's a local one-woman clinic attached to our GP Health Centre, but for more difficult procedures (such as the awkward tooth extraction I needed) they play safe by referring you to the hospital or to a larger clinic.

So last Friday Jane took me over to the Didcot Special Access clinic to be seen by another dentist there. I presume that this has the benefit of having other dentists and nurses at hand - as well as the adjacent cottage hospital - should complications arise. They didn't of course. In fact, Sarah, my dentist, was brilliant. Jane and she got me into the chair. She administered some tingly sort of cream and then injected. I don't enjoy injections, but it was fine, first on the inside and then on the outside of the gum. A few minutes of conversation and then it was cooked. Out came the pliers. A firm manipulating of the tooth back and forth, and then she asked the nurse to hold my head, since my muscle control is somewhat deficient. Firmer wiggling of the tooth and it was out, all in one piece. I inspected it, and I have to confess it was a mouldy specimen. "Better out than in," was Sarah's verdict.

I was anticipating trouble when the anaesthetic wore off, but I needn't have taken even the one ibrupofen I did. I was sent home with instructions and a gauze pad in case it began to bleed. But in fact the oozing was minimal. The whole operation was a success. And so tomorrow I'm off to have a filling sorted. There's of course no way a private company would provide this sort of service - for children and adults with all sorts of disabilities, for people with Down's Syndrome, for autistic children, and for people like me. We can't 'nip on to the chair', swallowing is a problem and breathing when you're tipped back can be too. It takes time to deal with patients with special needs. Health insurance wouldn't take them on. And private companies want profits. So the National Health Service is a necessary blessing.

What struck me about the whole experience were two things. One was what a difference trust in your medical practitioner makes. From our first consultation I felt Sarah knew her business and I could trust her. Although she didn't insist, her advice to have the tooth out was sound and proved correct. That trust leads to the second thing which is the difference that fear, or the lack of it, makes. I wasn't worried then, and I'm even less worried now, about opening my mouth and being entirely vulnerable to someone else poking sharp instruments and woodworking tools into my maw right under my very awake eyes.

When I put on facebook that I was going to have a tooth out, the sympathetic messages came pouring in: "Ouch!' "Good luck!" etc, all implying that I was to undergo an ordeal, all reinforcing the fear-full myth. Someone told me yesterday that over 95% of what we fear never happens, so that we waste an enormous amount of nervous energy in pointless worry. Fear is a great paralyser. What's disturbing is that much of our culture breeds fear. The insurance industry is fuelled by fear. What if your house fell down? What if you couldn't pay your mortgage? (Wasn't that what the banks said when they sold useless protection plans?) The media are full of scare stories (remember avian flu?). We're frightened to let children play in the streets. And of course some campaigns fuel our fear of pain and dying. It doesn't need to be so.