Article

Assisted dying

Care

Comment

Death & life

9 January 2024

6 min read

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.

Explainer

Comment

Holidays/vacations

Mental Health

Psychology

Time

12 July 2024

7 min read

How to get the best time out of your downtime

The joys and perils of taking time out for summer holidays.

Roger Bretherton

Roger is a Clinical and Coaching Psychologist.

A pair of sunglasses beside a swimming pool.

Jakob Owens on Unsplash.

For the first few days of any summer holiday there seems to be something wrong with my brain. Having looked forward for months to the moment when I can finally down tools and get some rest, having yearned for weeks to be free of the relentless schedule of emails and meetings, the moment finally arrives and I, well… hate it. I’ve wanted to stop for ages and then when I get the chance, I don’t want to. The flywheel momentum of the to-do list somehow carries over into the holiday and turns the first few days into an obsessive nightmare of drivenness.

This usually manifests in the agitation of wanting to rest while being unable to do so. My schedule says stop but my mind hasn’t got the memo. Instead of gently sculling across the pool, I’m swimming time trials through an obstacle course of inflatable beds and dayglo sea creatures. My family is quick to remind me that the languid currents of the pool were designed for relaxation, not for achieving a personal best. ‘It’s called the lazy river, Dad, not Verstappen at the Nürburgring.’ It makes me laugh, but it doesn’t make me stop. Nor does it stop them shouting things like ‘He’s taking the apex’, and ‘Dad’s got DRS’ from their sun loungers every time I sluice past.

In the old days, psychiatrists used to call it the Sunday Neurosis, the mild state of agitated low mood that afflicted people on their day off. The inescapable feeling that we should be doing something on days when there is nothing to do. The realisation that we’re not quite sure who we are when we are freed from the daily demands we can easily resent. I don’t know what you have planned for the summer- a beach party in the Bahamas or an Airbnb in Bridlington or the classic post-Covid staycation- but if you’re planning to take a break of any kind there are a few things you should perhaps keep in mind to make the best of it.

If we must work full throttle to the final hour – we may have to accept that we’ll spend the first few days on holiday getting used to being on holiday.

First. Slow down slowly.

We have a tendency to think that life can change at the speed of thought. Just because our diaries say holiday, doesn’t mean that our bodies are working to the same schedule. The autonomic nervous system that governs our state of physiological arousal largely operates automatically. It isn’t synched to our Outlook calendar and can’t deliver relaxation on demand, no matter how much we would like it to. Psychotherapist Deb Dana likens changing our state of physiological arousal to taking a lift down a few floors. It takes time to move from a highly active state, to a more relaxed and connected way of being. It doesn’t happen at the flick of a switch and we only agitate ourselves more thinking it should. She says we should befriend our nervous system. Instead of impatiently asking ourselves why we aren’t more relaxed, we should simply ask whether we need to be this agitated right now. And if we don’t, accept that it may take us some time to adapt to a less demanding environment.

When it comes to holidays, this suggests we should allow ourselves some time to acclimatise. Our bodies don’t automatically relax the moment they hit the beach, or hike the mountains, or lie under canvas - they need some time. We can do this before the holiday starts, by slowly decelerating as time off approaches. Like a car approaching a junction, if we want to stop smoothly, we might want to hit the brakes long before we reach the stop sign. And if we can’t do that – if we must work full throttle to the final hour – we may have to accept that we’ll spend the first few days on holiday getting used to being on holiday. It may not make us a pleasure to be with, but we can at least understand that it’s just how our bodies work. We are not droids, there isn’t an off switch on the back of our heads.

On holiday, we can take time to savour the experience of living- to be in our bodies, not just use them.

Second, get into your body (and out of your mind).

There’s a reason people spend so much time on holiday exercising their bodies: surfing, climbing, walking, riding. And weird stuff too, that you’d never dream of doing at home. One time in Normandy we booked a hand-pumped locomotive and huffed/puffed our way up and down a railway line for an afternoon. If I didn’t have the blisters to prove it, I’d think I’d dreamed that. Why do we do these things? Because it feels good to be aware of our bodies. Even my laps around the lazy river had a certain logic to them.

Many of us spend most of our time in disembodied thought. We can sometimes feel like the involuntary participants in a workplace time and motion study, in which worth is measured by output. It doesn’t matter where you work – home, school, office, a boat, the woods – sooner or later a spreadsheet will find you. You can run, but you cannot hide your data. And the impact this has on us is that we tend to be more aware of whether we have hit our targets than we are of the toll these targets take on our bodily wellbeing. Just recently I was asked to support a management team going through a stressful restructuring. One guy claimed he didn’t feel the stress of it- he just got on with the job. But when I sympathetically suggested he might be paying for it with his body, the litany of physical ailments he produced sounded like the list of side effects in a 1980s pharmaceutical commercial. He didn’t think he was stressed, but his body kept the score.

Let’s face it, going on holiday itself is stressful. It’s ranked 42 on the Holmes-Rahe Life Stress Inventory, just above ‘minor violations of the law’. Apparently packing for Marbella is more stressful than being pulled over by the cops. But it’s worth it if it creates a space in which we can de-stress, a space in which we can remember that we have a body, a body that needs to be looked after. Of all the benefits of bodily awareness – the positive sense of how our body feels, not the crippling consciousness of how it looks – perhaps the greatest is its capacity to turn off the hyperactive judgement of our minds. On holiday, we can take time to savour the experience of living- to be in our bodies, not just use them.

If we are defined by our output, who do we become when our output drops to zero?

Third. Make time to connect.

What happens when we slow down and learn to live in our bodies again? We become open to connection: socially, emotionally, even spiritually. Back to Deb Dana. She notes that when we take that slow elevator down from the souped-up state of busyness to a more relaxed and open state of mind, we activate the ventral vagal nervous system. She calls it our ‘home away from home’- which seems especially apt for being on holiday. In this state we are happier to be seen by others and therefore to be in relationship with them. Whether it’s a conversation while walking, or an evening card-game, or a meal together, all of them offer a chance for us to dwell in our home away from home in connection with others.

One of the things that can keep us so obsessively busy, is that we are not always sure who we would be if we stopped. We’re not certain we have a right to exist when we’re not being productive. If we are defined by our output, who do we become when our output drops to zero? This is why for thousands of years the practice of rest has been enshrined in spiritual practices. Without space to detach ourselves from the hectic pace of life we will inevitably confuse who we are with what we do. The Judeo-Christian tradition called it sabbath, not just a day of rest, but a way of being in which there is nothing left to prove. Holidays can offer us that opportunity, if we are willing to take it. Because after all what do we call someone who becomes more relaxed and embodied and connected? I think: more human.