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

Comment

Justice

15 October 2024

5 min read

Will clinicians and carers objecting to assisted death be treated as nuisances?

The risk and mental cost of forcing someone to act against their conscience.

Henna Cundill

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

A tired-looking doctor sits at a desk dealing with paperwork.

Francisco Venâncio on Unsplash.

After a formal introduction to the House of Commons next Wednesday, MP’s will debate a draft Bill to change UK legislation on Assisted Dying. Previously, a draft Bill was introduced in the Scottish Parliament in March 2024, and is currently at committee stage. Meanwhile, in the House of Lords, a Private Member’s Bill was introduced by Lord Falconer in July and currently awaits its second reading. These draft Bills, though likely to be dropped and superseded by the Commons Bill in the fullness of time, give an early indication of what provision might be made on behalf of clinicians and other healthcare workers who wish to recuse themselves from carrying out a patient’s end of life wishes on grounds of Conscientious Objection.

There are various reasons why someone might want to conscientiously object. The most commonly cited are faith or religious commitments. This is not to say that all people of faith are against a change in the law – there are some high-profile religious advocates for the legalisation of Assisted Dying, including both Rabbi Dr Jonathan Romain and Lord Carey, the former Archbishop of Canterbury. Even so, there will be many adherents to various faith traditions who find themselves unable to take part in hastening the end of someone’s life because they feel it conflicts with their views on God and what it means to be human.

However, there are also Conscientious Objectors who are not religious, or not formally so. Some people, perhaps many, simply feel unsure of the rights and wrongs of the matter. The coming debates will no doubt feature discussion of how changing the law for those who are terminally ill in the Netherlands and Canada has to lead to subsequent changes in the law to include those who are not terminally, but instead chronically ill. The widening of the eligibility criteria has reached a point where, in the Netherlands, one in every 20 people now ends their life by euthanasia. This troubling statistic includes many who are neurodivergent, who suffer from depression or are disabled. It is reasonable that, even if a Conscientious Objector does not adhere to a particular religion, they can be allowed to object if they feel uneasy about the social message that Assisted Dying seems to send to vulnerable people.

“You will often find that legislation that provides a right to conscientious objection is interpreted by judges these days in a way that seems to treat conscientious objectors as nuisances”

Mehmet Ciftci

Conscientious Objection clauses can themselves send a social message. A response to the Scottish Bill produced by the Law Society of Scotland notes concern over the wording of the Conscientious Objection clause, as it appears to be more prescriptive in the draft Bill than in previous Acts such as the Abortion Act of 1967. In the case of any legal proceedings that arise from a clinician’s refusal to cooperate, the current wording places the burden of proof onto the Conscientious Objector, stating (at 18.2):

In any legal proceedings the burden of proof of conscientious objection is to rest on the person claiming to rely on it.

The Bill provides no indication of what is admissible as ‘proof’. Evidence of membership of a Church, Synagogue, Mosque or similar might be the obvious starting point. But where does that leave those described above, who object on grounds of personal conscience alone? How does one meaningfully evidence an inner sense of unease?

The wording of the Private Member’s Bill, currently awaiting its second reading in the House of Lords, provides even less clarity, stating only (at 5.0):

A person is not under any duty (whether by contract or arising from any statutory or other legal requirement) to participate in anything authorised by this Act to which that person has a conscientious objection.

Whilst this indicates that there is no duty to participate in assisting someone to end their life, there remains a wider duty of care that healthcare professionals cannot ignore. Thus, a general feature in the interpretation of such conscience clauses in medicine is that that the conscientious objector is under an obligation to refer the case to a professional who does not share the same objection. This can be seen in practice looking at abortion law, where ideas around conscientious objection are more developed and have been tried in the courts. In the case of an abortion, a clinician can refuse to take part in the procedure, but they must still find an alternative clinician who is willing to perform their role, and they must still carry out ancillary care and related administrative tasks.

Placing such obligations onto clinicians could be seen as diminishing rather than respecting their objection. Dr Mehmet Ciftci, a Researcher at the McDonald Centre for Theology, Ethics and Public Life at the University of Oxford comments:

You will often find that legislation that provides a right to conscientious objection is interpreted by judges these days in a way that seems to treat conscientious objectors as nuisances who are just preventing the efficient delivery of services. They are forced to refer patients on to those who will perform whatever procedure they are objecting to, which involves a certain cooperation or facilitation with the act.

This touches everyone, even those who (if the Bill becomes law) will still choose to conscientiously object. Therefore, it is important to consider that the human conscience is a very real phenomenon, which means that facilitating an act that feels morally wrong can give rise to feelings of guilt or shame, even if one has not been a direct participant.

Psychologists observe that when feelings of guilt are not addressed, if they are treated dismissively or internalised, this can significantly erode self-confidence and increase the likelihood of depressive symptoms. But even before modern psychology could speak to the effects of guilt, biblical writers already had much to say on the painful consequences of living with a troubled conscience. In the Psalms, more than one ancient poet pours out their heart to God, saying that living with guilt has caused their bones to feel weak, or their heart to feel heavy, or their world to feel desolate and lonely.

If the Conscientious Objection clauses of the new Bill being proposed on Wednesday are not significantly more robust than those in the draft Bills proposed thus far, then perhaps that is something to which we should all conscientiously object? There is much to discuss about the potential rights and wrongs of legalising Assisted Dying, but there is much to discuss about the rights and wrongs of forcing people to act against their consciences too.