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.

Article

Comment

Justice

Leading

Politics

7 July 2025

5 min read

The consequences of truth-telling are so severe our leaders can’t admit their mistakes

When accountability means annihilation, denial is the only way to survive

Leah Brown

Leah is a campaigner for restorative practices and founder of The WayFinders Group.

Baroness Casey.

BBC.

Why do our leaders struggle so profoundly with admitting error?

Media and inquiries regularly report on such failures in the NHS, the Home Office, the Department of Work and Pensions, HMRC, the Metropolitan Police, the Ministry of Defence, and so many more public institutions. Often accompanied by harrowing personal stories of the harm done.

In a recent white paper (From harm to healing: rebuilding trust in Britain’s publicly funded institutions), I defined “harm” as a holistic concept occurring where physical injury or mental distress is committed and sustained and explained that harm is generally something that is caused, possibly resulting in injury or loss of life.

When we look at harm from an institutional perspective, structural power dynamics inevitably oppress certain groups, limit individual freedoms, and negatively affect the safety and security of individuals. But when we look at it through the lens of the individuals who run those institutions, we see people who often believe that they are acting in good faith, believe that their decisions won’t have a significant impact, who don’t have time to think about the decisions they are making, or worse still, prefer to protect what is in their best interest.

Even well-intentioned leaders can become complicit in cycles of harm - not just through malice, but through their lack of self-awareness and unwillingness to put themselves in the shoes of the person on the receiving end of their decisions.

Martin Luther King Jr supposedly said, “the ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” In contemporary politics, leaders are neither selected nor (largely) do they remain, because of their humility. Humility is synonymous with weakness and showing weakness must be avoided at all cost. Responsibility is perceived as something that lies outside of us, rather than something we can take ownership of from within.

So, why do leaders struggle so profoundly with admitting error?

The issue is cultural and three-fold.

First, we don’t quantify or systematically address human error, allowing small mistakes to escalate.

We then enable those responsible to evade accountability through institutional protection and legal barriers.

Finally, we actively discourage truth-telling by punishing whistle-blowers rather than rewarding transparency. Taken together, these create the very conditions that transform errors into institutional harm.

Nowhere is this plainer than in Baroness Casey’s recent report on Group-based Child Sexual Exploitation and Abuse that caused the Government to announce a grooming gangs inquiry. In this case, the initial harm was compounded by denial and obfuscation, resulting not just in an institutional failure to protect children, but system-wide failures that have enabled the so-called “bad actors” to remain in situ.

Recently, this trend was bucked at Countess of Chester Hospital where the police arrested three hospital managers involved in the Lucy Letby investigation. Previously, senior leadership had been protected, thus allowing them to evade accountability. Humble leadership would look like acting when concerns are raised before they become scandals. However, in this case, leadership did act; they chose to bury the truth rather than believe the whistle-blowers.

Until we separate admission of error from institutional destruction, we will continue to incentivise the very cover-ups that erode public trust.

The answer to our conundrum is obvious. In Britain, accountability is conflated with annihilation. Clinging onto power is the only option because admitting error has become synonymous with career suicide, legal liability, and is tantamount to being hanged in the gallows of social media. We have managed to create systems of governing where the consequences of truth-telling are so severe that denial is the only survival mechanism left. We have successfully weaponised accountability rather than understanding it as the foundation of trust.

If Rotherham Metropolitan Borough Council had admitted even half of the failures Alexis Jay OBE identified in her 2013 report and that Baroness Casey identifies in her 2025 audit, leaders would face not only compensation claims but media storms, regulatory sanctions, and individual prosecutions. It’s so unthinkable to put someone through that that we shrink back with empathy as to why someone might not speak up. But this is not justice. Justice is what the families of Hillsborough have been seeking in the Public Authority (Accountability) Bill: legal duties of candour, criminal offences for those who deliberately mislead investigations or cover-up service failures, legal representation, and appropriate disclosure of documentation.

Regardless of your political persuasion, it has to be right that when police misconduct occurs, officers should fear not only disciplinary action and criminal charges. When politicians admit mistakes, they should face calls for their resignation. Public vilification is par for the course. Being ejected from office is the bare minimum required to take accountability for their actions.

The white paper shows that the cover-up always causes more damage than the original error. Institutional denial - whether relating to the Post Office sub-postmasters, the infected blood scandal victims, grooming gang victims, Grenfell Towers victims, Windrush claimants, or Hillsborough families - compounds the original harm exponentially.

In a society beset with blame, shame, and by fame, it is extraordinary that this struggle to admit error is so pervasive. Survivors can and will forgive human fallibility. What they will not forgive is the arrogance of institutions that refuse to acknowledge when they have caused harm.

The white paper refers to a four-fold restorative framework that starts with acknowledgment, not punishment. The courage to say “we were wrong” is merely the first step. Next is apology and accountability followed by amends. It recognises that healing - not just legal resolution - must be at the heart of justice, treating both those harmed and those who caused it as whole human beings deserving of dignity.

Until we separate admission of error from institutional destruction, we will continue to incentivise the very cover-ups that erode public trust. I was recently struck by Baroness Onora O’Neill who insisted that we must demand trustworthiness in our leaders. We cannot have trustworthiness without truth-telling, and we cannot have that without valuing the act of repairing harm over reputation management. True authority comes from service, through vulnerability rather than invulnerability; strength comes through the acknowledgement of weakness not the projection of power.

We must recognise that those entrusted with power have a moral obligation to those they serve. That obligation transcends institutional self-interest. Thus, we must stop asking why leaders struggle to admit error and instead ask why we have made truth-telling so dangerous that lies seem safer.