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

Economics

Leading

Politics

Wisdom

8 May 2025

5 min read

When someone makes a claim, ask yourself these questions

How stories, statistics, and studies exploit our biases.

Alex Edmans

Alex is a professor of finance, and an expert in the use and misuse of data and evidence.

A member of an audience makes a point while gesturing.

On the other hand...

Antenna on Unsplash.

“Check the facts.”

“Examine the evidence.”

“Correlation is not causation.”

We’ve heard these phrases enough times that they should be in our DNA. If true, misinformation would never get out of the starting block. But countless examples abound of misinformation spreading like wildfire.

This is because our internal, often subconscious, biases cause us to accept incorrect statements at face value. Nobel Laureate Daniel Kahneman refers to our rational, slow thought process – which has mastered the above three phrases – as System 2, and our impulsive, fast thought process – distorted by our biases – as System 1. In the cold light of day, we know that we shouldn’t take claims at face value, but when our System 1 is in overdrive, the red mist of anger clouds our vision.

Confirmation bias

One culprit is confirmation bias – the temptation to accept evidence uncritically if it confirms what we’d like to be true, and to reject a claim out of hand if it clashes with our worldview. Importantly, these biases can be subtle; they’re not limited to topics such as immigration or gun control where emotions run high. It’s widely claimed that breastfeeding increases child IQ, even though correlation is not causation because parental factors drive both. But, because many of us would trust natural breastmilk over the artificial formula of a giant corporation, we lap this claim up.

Confirmation bias is hard to shake. In a study, three neuroscientists took students with liberal political views and hooked them up to a functional magnetic resonance imaging scanner. The researchers read out statements the participants previously said they agreed with, then gave contradictory evidence and measured the students’ brain activity. There was no effect when non-political claims were challenged, but countering political positions triggered their amygdala. That’s the same part of the brain that’s activated when a tiger attacks you, inducing a ‘fight-or-flight’ response. The amygdala drives our System 1, and drowns out the prefrontal cortex which operates our System 2.

Confirmation bias looms large for issues where we have a pre-existing opinion. But for many topics, we have no prior view. If there’s nothing to confirm, there’s no confirmation bias, so we’d hope we can approach these issues with a clear head.

Black-and-white thinking

Unfortunately, another bias can kick in: black-and-white thinking. This bias means that we view the world in binary terms. Something is either always good or always bad, with no shades of grey.

To pen a bestseller, Atkins didn’t need to be right. He just needed to be extreme.

The bestselling weight-loss book in history, Dr Atkins’ New Diet Revolution, benefited from this bias. Before Atkins, people may not have had strong views on whether carbs were good or bad. But as long as they think it has to be one or the other, with no middle ground, they’ll latch onto a one-way recommendation. That’s what the Atkins diet did. It had one rule: Avoid all carbs. Not just refined sugar, not just simple carbs, but all carbs. You can decide whether to eat something by looking at the “Carbohydrate” line on the nutrition label, without worrying whether the carbs are complex or simple, natural or processed. This simple rule played into black-and-white thinking and made it easy to follow.

To pen a bestseller, Atkins didn’t need to be right. He just needed to be extreme.

Overcoming Our biases

So, what do we do about it? The first step is to recognize our own biases. If a statement sparks our emotions and we’re raring to share or trash it, or if it’s extreme and gives a one-size-fit-all prescription, we need to proceed with caution.

The second step is to ask questions, particularly if it’s a claim we’re eager to accept. One is to “consider the opposite”. If a study had reached the opposite conclusion, what holes would you poke in it? Then, ask yourself whether these concerns still apply even though it gives you the results you want.

Take the plethora of studies claiming that sustainability improves company performance. What if a paper had found that sustainability worsens performance? Sustainability supporters would throw up a host of objections. First, how did the researchers actually measure sustainability? Was it a company’s sustainability claims rather than its actual delivery? Second, how large a sample did they analyse? If it was a handful of firms over just one year, the underperformance could be due to randomness; there’s not enough data to draw strong conclusions. Third, is it causation or just correlation? Perhaps high sustainability doesn’t cause low performance, but something else, such as heavy regulation, drives both. Now that you’ve opened your eyes to potential problems, ask yourselves if they plague the study you’re eager to trumpet.

A second question is to “consider the authors”. Think about who wrote the study and what their incentives are to make the claim that they did. Many reports are produced by organizations whose goal is advocacy rather than scientific inquiry. Ask “would the authors have published the paper if it had found the opposite result?” — if not, they may have cherry-picked their data or methodology.

In addition to bias, another key attribute is the authors’ expertise in conducting scientific research. Leading CEOs and investors have substantial experience, and there’s nobody more qualified to write an account of the companies they’ve run or the investments they’ve made. However, some move beyond telling war stories to proclaiming a universal set of rules for success – but without scientific research we don’t know whether these principles work in general. A simple question is “If the same study was written by the same authors, with the same credentials, but found the opposite results, would you still believe it?”

Today, anyone can make a claim, start a conspiracy theory or post a statistic. If people want it to be true it will go viral. But we have the tools to combat it. We know how to show discernment, ask questions and conduct due diligence if we don’t like a finding. The trick is to tame our biases and exercise the same scrutiny when we see something we’re raring to accept.

This article is adapted from May Contain Lies: How Stories, Statistics, and Studies Exploit Our Biases – and What We Can Do About It
(Penguin Random House, 2024)
Reproduced by kind permission of the author.

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