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

Assisted dying

Care

Comment

Politics

7 May 2025

4 min read

Assisted dying is not a medical procedure; it is a social one

Another vote, and an age-related amendment, highlight the complex community of care.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

Graffiti reads 'I miss me' with u crossed out under the 'mem'

Sidd Inban on Unsplash.

Scottish Parliament’s Assisted Dying bill will go to a stage one vote on Tuesday 13th May, with some amendments having been made in response to public and political consultation. This includes the age of eligibility, originally proposed as 16 years. In the new draft of the bill, those requesting assistance to die must be at least 18.

MSPs have been given a free vote on this bill, which means they can follow their consciences. Clearly, amongst those who support it, there is a hope that raising the age threshold will calm the troubled consciences of some who are threatening to oppose. When asked if this age amendment was a response to weakening support, The Times reports that one “seasoned parliamentarian” (unnamed) agreed, and commented:

“The age thing was always there to be traded, a tactical retreat.”

The callousness of this language chills me. Whilst it is well known that politics is more of an art than a science, there are moments when our parliamentarians literally hold matters of life and death in their hands. How can someone speak of such matters as if they are bargaining chips or military manoeuvres? But my discomfort aside, there is a certain truth in what this unnamed strategist says.

When Liam McArthur MSP was first proposed the bill, he already suggested that the age limit would be a point of debate, accepting that there were “persuasive” arguments for raising it to 18. Fortunately, McArthur’s language choices were more appropriate to the subject matter. “The rationale for opting for 16 was because of that being the age of capacity for making medical decisions,” he said, but at the same time he acknowledged that in other countries where similar assisted dying laws are already in operation, the age limit is typically 18.

McArthur correctly observes that at 16 years old young people are considered legally competent to consent to medical procedures without needing the permission of a parent or guardian. But surely there is a difference, at a fundamental level, between consenting to a medical procedure that is designed to improve or extend one’s life and consenting to a medical procedure that will end it?

Viewed philosophically, it would seem to me that Assisted Dying is actually not a medical procedure at all, but a social one. This claim is best illustrated by considering one of the key arguments given for protecting 16- and 17- year-olds from being allowed to make this decision, which is the risk of coercion. The adolescent brain is highly social; therefore, some argue, a young person might be particularly sensitive to the burden that their terminal illness is placing on loved ones. Or worse, socially motivated young people may be particularly vulnerable to pressure from exhausted care givers, applied subtly and behind closed doors.

Whilst 16- and 17- year-olds are considered to have legal capacity, guidance for medical staff already indicates that under 18s should be strongly advised to seek parent or guardian advice before consenting to any decision that would have major consequences. Nothing gets more major than consenting to die, but sadly, some observe, we cannot be sure that a parent or guardian’s advice in that moment will be always in the young person’s best interests. All of this discussion implies that we know we are not asking young people to make just a medical decision that impacts their own body, but a social one that impacts multiple people in their wider networks.

For me, this further raises the question of why 18 is even considered to be a suitable age threshold. If anything, the more ‘adult’ one gets, the more one realises one’s place in the world is part of a complex web of relationships with friends and family, in which one is not the centre. Typically, the more we grow up, the more we respect our parents, because we begin to learn that other people’s care of us has come at a cost to themselves. This is bound to affect how we feel about needing other people’s care in the case of disabling and degenerative illness. Could it even be argued that the risk of feeling socially pressured to end one’s life early actually increases with age? Indeed, there is as much concern about this bill leaving the elderly vulnerable to coercion as there is for young people, not to mention disabled adults. As MSP Pam Duncan-Glancey (a wheelchair-user) observes, “Many people with disabilities feel that they don’t get the right to live, never mind the right to die.”

There is just a fundamental flawed logic to equating Assisted Dying with a medical procedure; one is about the mode of one’s existence in this world, but the other is about the very fact of it. The more we grow, the more we learn that we exist in communities – communities in which sometimes we are the care giver and sometimes we are the cared for. The legalisation of Assisted Dying will impact our communities in ways which cannot be undone, but none of that is accounted for if Assisted Dying is construed as nothing more than a medical choice.

As our parliamentarians prepare to vote, I pray that they really will listen to their consciences. This is one of those moments when our elected leaders literally hold matters of life and death in their hands. Now is not the time for ‘tactical’ moves that might simply sweep the cared-for off of the table, like so many discarded bargaining chips. As MSPs consider making this very fundamental change to the way our communities in Scotland are constituted, they are not debating over the mode of the cared-for’s existence, they are debating their very right to it.