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.

Article

Character

Comment

17 April 2024

5 min read

Work isn’t working, it’s killing us

We mistake the nature of work and our purpose within it.

Cameron Wiltshire-Plant

Cameron is a curate in Leicestershire

Two people sit beside each other working on laptops, One looks askance to the other who frowns.

Resume Genius on Unsplash.

What is work for? In our individualist society we perhaps might zoom in on the minutiae of the specific role that we fulfil. Work is for the success of the company I work for, work is for building up my CV, work is to earn money enough to live, work is for seeing people I don’t have to live with. But what about work? The burden that humans have always had to gather enough resources to provide for themselves. We are mistaking the nature of work and our purpose within it, and it is beginning to kill us.

Each of the recent generations have had different, and askew, attitudes to their work. Baby boomers- those who got a job and a sensible haircut in the 60s, conceived work as a contract. They worked well at almost anything and the reward was home ownership, resources to provide for a family, and saving for leisure. The purpose of their work is the lifestyle it creates. To some extent, their successors in Gen X had the same perception and the same contract- stick at any industry and the reward will be generous enough to make the graft worth it.

But what happens when that contract is broken? When work no longer leads to those rewards? The Millennial answer is to seek out work that gives purpose, to accept the reward will not be fulfilling and so to find the purpose in the end of the work itself. Even if that means a lifetime of renting and scrimping, because the reward is not to be found in the payment.

A slow generational drift from the true purpose and boundaries of work has left us confused about its point and struggling to engage.

The Gen Z answer to this broken contract is the most fascinating of all; a reluctance to work at all. There is ‘quiet quitting’ whereby you do as little as possible whilst remaining employed, ‘bare minimum Mondays,’ and, of course, ‘lazy girl jobs.’ The purported aim of this generation is to find jobs where they can work from home, do almost nothing, and still receive a generous salary. Others are living the ‘soft life.’ They move in with mum and dad (usually boomers who have run the rat race and received the benefits of the contract) and do something creative part-time, earning little but doing little. It's a bit of the old baby boomer attitude seeking pleasure outside work but without the corresponding work ethic or career mindset.

On top of this is the mental health crisis, which prevents many of Gen Z from working, with one in three non-graduates out of work with mental health conditions. Bosses receive calls from parents of those in their 20s explaining that their children are too unwell to work.

I suggest that these things are linked, and a slow generational drift from the true purpose and boundaries of work has left us confused about its point and struggling to engage. We must look outside ourselves to understand what work was created for. In Genesis, the Christian origin story, God conceives work as a place of dignity and purpose. What Adam and Eve did in the garden mattered- they were the leaders of creation, and God even gave them the responsibility of naming other creatures. Humans were made to have responsibility, made to express this in their work. Even in the drudgery of repeated physical, administrative, or household tasks, we have the freedom to find purpose. We can take pleasure and pride in making things, fixing things, restoring things, even if just to the state they were in when we cleaned last week.

Find the purpose in the making, fixing, restoring, the very task itself.

The ‘quiet quitting’ of Gen Z or the dry contract of the boomers will not cut it. Even in jobs we don’t like, or tasks we find overwhelming, the same reframing is needed, perhaps even more so. Work itself brings purpose, and that is worth giving our whole selves to, otherwise listlessness and sadness will get us. We were made to find purpose and joy in the task of whatever is in front of us, no matter how simple.

Millennials have swung the pendulum too far in the other direction. Yes, this generation have found the importance of purpose in their work. But only in work that has an end outside of itself. Work has been created with an internal, permanent purpose. Suggesting that meaning only comes from employment with obvious altruistic ends means that any other kind of work, domestic or employed, is devoid of this meaning. The same listlessness ensues in any role not found to have such an end.

St Paul elevates work explicitly even beyond this created place of purpose. In his letter to a church in Colossae, he writes, ‘Whatever you do, work at it with all your heart, as working for the Lord, not for human masters.’ In other words, work is an act of worship, acting as if the task we are completing is for God, and putting the requisite effort in.

Of course, this is a massive challenge. How many of us put as much work in to satisfy our bosses as we would if they were the ultimate director of our eternal destiny? But it does redeem those moments where we wonder what the point of what we’re doing is, who will see it, and if it is really worth doing properly at all. God sees. God knows. And that makes it worth doing properly.

Paul also makes it clear here that work is not just what we get paid for. Work is everything we do that is not rest. Whatever we do - employed, at home, inrelation to our families. And this allows those who cannot work, in an employment sense, to take part in God’s purpose for humanity by working in a way in which they can. Whether it’s caring for a relative, nurturing a tiny veg patch, creating a piece of art, or hoovering the carpet. Find the purpose in the making, fixing, restoring, the very task itself. Do it as if God were watching. And feel yourself become more human.