An electoral dilemma

As my readers will have gathered, I have reservations concerning legalising assisted suicide. At the last general election, at our local hustings I asked the candidates their views. Rather uninterestingly, all four of them agreed with the idea that people should be able to choose the time of their death, when they were in terminal pain. 

😏😎😌🙊

That didn't help me decide, and so I voted with my old inclinations. However the urbane Conservative, David Johnstone, was comfortably elected. But if the same is true this time, I shall face a dilemma. In the wake of Esther Rantzen's comments, Sir Keir Starmer, who is likely to the next Prime Minister, declared that he would give some government time for a private members' bill to legalise assisted dying. And so I wrote to the leader of the opposition.

"Dear Sir Keir

"I had hoped to kick the Tories out of this true blue constituency and vote in a Labour candidate, as I believed was achievable.  I was at one time a member of the Labour Party when it espoused truly socialist values and policies.  However your latest pronouncement that you would make government time available for a private member’s bill and that you were yourself in favour of legalising assisted dying/suicide has been the final straw for me. 

"I clearly don’t know where our election candidates will stand on the issue, though I know our present MP’s views, but I view a change in the law dangerous, both from the precedence set in other jurisdictions and the pressures it would put on the vulnerable, and a betrayal of our past record of upholding the sanctity of life.  I know you won’t change your mind in an election year when polling (which depends on the framing of the question - for example ‘Would you prefer a Labour or a Conservative government?’) seems to indicate a majority of voters sharing your view. 

"So, anyway, regretfully, I’m writing to inform you that you have lost at least one vote here. 

"By the way I have Motor Neurone Disease.

"Yours sincerely..."

 

I wonder what the Reform UK Party's policy about it is...!

What do you think of Esther?

"What do you make of Esther Rantzen?" asked my brother.

I knew what he was talking about, as no doubt all listeners of Radio 4's Today Programme would have done. Clearly the advocates of assisted dying, or specifically suicide, have launched the next round of their campaign, even enlisting the late Diana Rigg, whose resemblance to my wife was once commented on by an old welsh policemen, as a witness. The Today Programme devoted a great deal of airtime to the subject on a number of days. My reply to my brother was that I thought it was a good thing if we were more open about the subject of death and dying. After all they are events everyone without exception will come in contact with at some point or another. So the sooner we stop treating it as a taboo subject the better. However the dangers of legalising assisted suicide, are proved by places like Canada and Belgium.

In January this year I made a submission to the Parliamentary Health and Social Care Committee consultation on Assisted dying/assisted suicide:

"I am writing as an individual who was diagnosed with a rare form of Motor Neurone Disease twenty-two years ago and who has experienced the condition’s relentless deterioration since then. There are a number of my contemporaries who have survived that long. That, and witnessing the ravages of the disease on friends in our local MNDA branch plus an Ethics qualification from Oxford, is the extent of my expertise.

"My first observation is how positively my contemporaries, with short or longer prognoses, with the disease seize hold of life. Clearly there are some who, like Rob Burrows, devote themselves to fund-raising and creating awareness; while others enjoy the opportunities of life that come their way. What might have seemed a death sentence has proved a challenge to live.

"Secondly, I have recently discovered myself how expert professional care can enhance what is often portrayed as undignified dependence. Good caring can in fact add to quality of life. The sad thing however is that it is not something which the state will normally provide. Along with terminal palliative care, domestic social care must surely be a spending priority for any government that cares about the well-being of all its citizens. I’m fortunate to live an area of excellent MND provision and good, though not abundant, palliative care. But I understand that this is not equally spread through the country. If it were, I suspect it would reduce the fear of dying which must be a major motivator for assistance to ending one’s life.

"Ironically, in MND, according to the Association’s information sheet, How will I die?, those fears are greatly exaggerated: ‘In reality, most people with MND have a peaceful death. The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working.

‘Specialist palliative care supports quality of life through symptom control. practical help, medication to ease symptoms and emotional support for you and your family.

‘When breathing becomes weaker, you may feel breathless and this can be distressing. However, your health care professionals can provide support to reduce anxiety.

‘You can also receive medication to ease symptoms throughout the course of the disease, not just in the later stages. If you have any concerns about the way medication will affect you, ask the professionals who are supporting you for guidance.

‘Further weakening of the muscles involved in breathing will cause tiredness and increasing sleepiness. Over a period of time, which can be hours, days or weeks, your breathing is likely to become shallower. This usually leads to reduced consciousness, so that death comes peacefully as breathing slowly reduces and eventually stops’ (EOL5-How-will-I-die-2018, rev 2021).

"So this is a third and subtle danger of legalising assisted dying/suicide. It would increase people’s fear of the inevitable fact of death and dying. I think this can be one factor in explaining why, in jurisdictions which have introduced it, we see it being extended beyond the first strict limits. It is held out as an answer to this fearful fact, death, whereas in fact death and dying should be talked about in realistic terms, as normal, as concisely outlined by Dr Kathryn Mannix (https://www.bbc.co.uk/ideas/videos/dying-is-not-as-bad-as-you-think/p062m0xt). As she says, normally dying isn’t as bad as we think.

If the government should be doing anything, the first thing it might well do, is to promote informed education about dying of the sort exemplified by specialists such as Dr Mannix, as well as adequately funding her former specialism of palliative care. It should start with schools’ curricula. After all every child will have encountered death at some stage.

Fourthly, the dangers of coercion, in my experience, are not so much external as internal. It’s often rightly observed that prolonged pain is worse for the engaged spectator than for the sufferer. If you care for someone, seeing them struggling is barely tolerable. You may wish to see their struggle over, but underlying that wish is your own desire to be spared more of your own horror show. The person who is ‘suffering’ however has that EOL5-How-will-I-die-2018, rev 2021 strong survival instinct, common to all humans, and is more concentrated on living than dying. Having said that, when you are depressed, as might be natural, that instinct gets temporarily eclipsed. Then you need protection from your own dark sky. It is at such times that your other inner demons emerge: your sense of being a burden - to your family, to your friends (if you have any), to the NHS and to the state purse; your fear of losing your savings and of leaving nothing to your loved ones; your fear of pain and of dying (exaggerated by popular mythology), and your sense of suffering, heightened by your depression. 

"For most of us with long incurable diseases, it’s these internal perceptions that are most coercive, although they can be easily compounded or even exploited from outside. I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important to our society and worth caring for. ‘Any man’s death diminishes me...’ and so we will value it to the end."

I'm grateful that when I received my 'motor neurone disorder' diagnosis, which was initially frightening, I couldn't be tempted to opt for an early death. Instead of one Christmas with my family (as I warned them), I've enjoyed 22 more Christmases. That was the law against suicide fulfilling its safeguarding function, protecting the vulnerable, as I was then. Contrary to my preconceptions, my form of MND (PLS) is very gradual and I've been able to live a full if increasingly limited life, thanks to my wife, Jane, who cares for me 100% 24 hours a day seven days a week. 

My view is still that legalising assisted dying/suicide has more cons than pros. The better choice is to invest in hospice and palliative care, so that everyone may have access to pain and symptom care in the last years of their life.

 

Coronavirus complacency

I am, regrettably, as readers of this blog will have realised, increasingly becoming that unattractive creature, a grumpy old man. Perhaps it's exacerbated by the frustration of lockdown added to disability. My usual sunny disposition seems to hide beneath the clouds. But I hope you'll allow me another moan.

One recent Sunday night as I brushed my teeth I heard this unpalatable interchange between Stephen Nolan and his guest on his Radio 5 Live show. It went something like this. Esther Rantzen, who was his guest, she of Childline and Silverline and That's Life had been arguing, I gather, that people over 70 whatever their state of health or fitness should confine themselves to their homes even when others were being allowed out as the epidemic eased off. She advanced good reasons for her thesis, and of course callers agreed and disagreed. Then Stephen Nolan asked:

"SN How tough are you finding it all?

"ER  Do you want the truth...? Promise you won’t tell anyone...? 

Like Michael Palin this morning, Michael Palin said. Getting up and finding you haven’t got an alarm clock waking you at 7, suddenly finding you haven’t got to get up and do this and that and the other, suddenly being able to reflect a little bit, about the crucial things in life, the most precious things in life, having an opportunity just to write things down for your grandchildren, it’s such an extraordinary opportunity. 

The Queen talked about having time to reflect, and I’m hoping we come out of this with some idea about what life is really for and about, who the people are in our lives, about what the world is for. (You know when someone quotes Michael Palin and the Queen it's a weak idea that needs propping up.)

"SN  I’ve spoken to you a number of times over the years… Here’s the truth about me. I agree with you. I’m working 7 days a week around the clock for the last 20 odd years. You know what this business is like….

I’ve seen more of my house in the last 5 or 6 weeks than in 5 or 6 years. And do you know what? I kinda enjoy it. I enjoy the simplicity of not rushing out to work, and looking up and seeing the colour of the sky, and having a bit of time for me and a bit of time to think. Now I wouldn’t want it to go on for ever, but actually it’s not that bad - for me.

"ER. And we’ve watched a beautiful spring, the sunniest April since records began. I know it’s a disaster because it’s global warming and all that, but it’s been so beautiful…. I think it’s the workaholics like you are and I used to be this is a very useful splash of cold water to make us recognise that actually we were cutting out of our lives the things that make life worth living."

Well, it was a very lovely piece of homespun philosophy - with which I partly agreed - but I'm afraid it annoyed me. It was so coy and complacent. These very well-fed broadcasters who without doubt have very nice houses (probably more than one), investments and savings, and who are continuing to earn and can look forward to triple-locked pensions as well as occupational schemes, can afford to enjoy "the extraordinary opportunity" of lockdown. But there are many more who can't. There are millions more who are struggling and will be much worse off after this whole thing is "part of history".

March saw a rise in rainforest deforestation in the Amazon of 30% in March compared to last year, while the rest of the world was distracted with COVID-19. Also contributing to the problem of climate change, large areas of blanket bog in Northern Ireland were set on fire last week. As Ms Rantzen, put it, lightly, "it’s global warming and all that". The virus will be nothing compared to the effects of global warming. That would the real "disaster".

Photo: BBC TV

And the ones who will suffer from it are not the generation of the post-war baby boomers or the preceding generation. It's the very ones who are bearing the brunt of the present enforced restrictions, and will for decades to come be paying for the necessary but seemingly unending stream of £ billions of government expenditure in the face of the virus. I can understand why the government toyed with the idea of "herd immunity" which would have at least culled many of us pensioners and perhaps shortened the pandemic's grip here. (However I'm glad they changed their tune since it seems a particularly unpleasant way to die.)  

To give him his due, before the news Stephen Nolan did give a nod to the younger generation who are hit hardest: the single parents' restricted to their urban flats, workers in the gig economy, the millions whose work had suddenly gone, those hoping to buy their first home. They can't afford to admire the spring-time; they have to work all hours merely to survive. They can't rely on foodbanks and charity for ever. Their lives will never be the same. Their personal economies will not recover. We have personal security but we have very probably impoverished the next generation and their children. The least we can do for them is to act as decisively as we have been scared by COVID-19 into doing in the face of climate change - "led by the science". We may yet be able to save them at least from climate catastrophe.