What do you make of Esther?

A campaigner’s call to change an assisted dying law got family calling MND sufferer Michael Wenham. Here he shares why such legalisation will increase people’s fear of dying.

Michael Wenham

Michael Wenham lives with a motor neurone disorder, Primary Lateral Sclerosis. He blogs at My Donkey Body.

Today Programme post about Esther Rantzen's comments.

BBC.

"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 over 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.

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.

In January this year I made a submission to the Parliamentary Health and Social Care Committee consultation on assisted dying/assisted suicide. Here’s some of that submission.

“I am writing as an individual who was diagnosed with a rare form of Motor Neurone Disease (MND) 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.

"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. 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.

Finally, 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 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 per cent. 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.

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Economics

23 October 2024

1 min read

Budgeting for discontent

The Chancellor can't please everyone, but is contentment possible?

Paul Valler

Paul Valler is an executive coach and mentor. He is a former chair of the London Institute for Contemporary Christianity.

A woman stands behind a lectern against a blue and red backdrop.

Chancellor Rachel Reeves speaks at a recent event.

HM Treasury.

As the Chancellor Rachel Reeves seeks to raise billions in this Autumn budget, the news media are all over the downsides. Poor pensioners freezing during winter and businesses complaining of the tax burden are political headlines. Tough choices must be made, but we are rarely happy when it comes to money.

Economic discontent is ironically a cultural norm in first world countries. In the west we have become used to what psychologists call the hedonic treadmill – adjusting our expectations to any new benefits and finding ourselves wanting even more, to try to maintain the same level of happiness. It’s a mentality that dooms us to discontent. Socrates said, ‘He who is not contented with what he has, would not be contented with what he would like to have.’

Contentment seems to be a forgotten virtue today, and increasingly elusive in a society striving for happiness through wealth. Yet being content in life is a more valuable form of wealth than money. There is something enormously attractive about a tranquil state of mind and heart. Contentment does not mean passive acquiescence; there is a noble side to being passionately discontented about something that is unjust – especially when we are fighting for others. William Wilberforce demonstrated that with his campaign for the repeal of laws allowing slavery.

Our personal challenge is to be content in ourselves, whatever the circumstances. Oscar Wilde said, ‘True contentment is not having everything, but being satisfied with everything you have.’ Practising paying attention to what we do have and being thankful for it. That attitude of gratitude is a recognised way to lift our mood and strengthen our resilience. But thankfulness doesn’t solve every problem. Warm words may help warm hearts, but they don’t heat cold homes. Although gratitude is proven to improve our wellbeing, it’s not enough to compensate for all the problems of life. Because here’s the deal; life is tough and then you die, and there are many worse things than economic woes.

Pain, grief and loss are all too common, and they can test our resilience beyond what feels like our ability to endure. Chronic physical or mental illness for example; or being permanently disabled. Or the life-sapping effort to parent children with special needs; or caring for a parent/partner with dementia - especially when it goes on and on. Sometimes horrible events happen like violent abuse, or the deep grief of relationship breakdown or bereavement. This level of suffering pushes us to the end of ourselves, to the place where something more than psychological self-help is needed. What is the secret of contentment then?

I don’t envy the Chancellor, and I do not trivialise the very real challenges raised by having to make tough economic choices.

This is where the secular and the Christian worldview are radically different. Secular philosophers call people to show their own self-sufficiency and superior reason when enduring suffering. This can feel principled and stoic, but it lacks empathy and hope. Christianity accepts the reality of our own weakness and insufficiency, recognising that we can’t fix everything ourselves. Instead of trusting in humanity, we choose to trust God both for this life and the life to come. And this trust and hope is linked to a deeper form of contentment, which transcends pure rationality.

Of course, sceptics say this is just psychological comfort from an imaginary friend, and it doesn’t make sense, because surely any good God would not allow us to suffer in the first place. But any realist must acknowledge that a lot of human suffering comes from the damaging exercise of our own free will. Wars and slavery are examples. If God were to override our free will, we would be robbed of the authentic capacity to love, which makes us fully human. The coexistence of free will, suffering and God is a complex issue.

The experience of millions of Christ followers is that trusting God is much more than imaginary comfort. God is real and prayer changes things; the most ordinary, natural and chance experiences can be affected by it. And prayer changes us. In our vulnerability, if we choose to trust God something changes, we begin to relax, things become a bit easier to bear. In fact, the apostle Paul claimed that Christ’s power was perfected in his own weakness.

Contentment is a strange peace that comes from trusting God in the middle of difficult circumstances. One of the great old hymns was written by a man who lost his four daughters in an accident at sea, and also lost all his money in a fire. The refrain says, ‘It is well, it is well with my soul.’ This isn’t denial or delusion, it is the inner sense of quietness that God can give. Only an eternal perspective allows for that kind of contentment.

I don’t envy the Chancellor, and I do not trivialise the very real challenges raised by having to make tough economic choices. Britain is clearly in a place where some stringent fiscal discipline is needed, and that will inevitably cause some hardship and difficulties. But in the face of all the discontent that is so freely shared in the news, there is another way to respond. Instead of complaining about our flawed Government or moaning about our circumstances, we can change our perspective to put our trust in the ultimate Authority. And in doing so can find a peace that the world cannot give. Contentment is a treasure beyond the wealth of nations.