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.

Conviction politics is changing morality

Political dialogue gives way to animal-like culture war.

Barnabas Aspray

Barnabas Aspray is Assistant Professor of Systematic Theology at St Mary’s Seminary and University.

A severed doll head, resembling Donald Trump, lies on dirty ground.

Max Letek on Unsplash.

“We're gathering 100 MILLION signatures to OVERTURN Trump's wrongful conviction!”

I received this SMS message, along with a link, on Monday 10th June. It was the fourth message of its kind I’d received since the verdict convicting former US President Donald Trump of felony. This time, out of curiosity I followed the link. I found a lot of words in capital letters conveying a sense of extreme urgency, but I did not find any evidence or argument for the injustice of the verdict.

Trump’s conviction has been met with a torrent of reactions from people across the political spectrum. Everyone sees the event as an episode in the upcoming US election in which Trump plans to run for president. For those on the left, it’s final and conclusive proof that he is unfit for office; the evidence is clear, the courts have decided, end of story. For those on the right, it’s a further sign of the depraved depths to which the Democrats will go to discredit him; the jury was rigged, and the whole thing was a political stunt to win the election. The legitimacy of the court ruling is something nobody on the left questions and nobody on the right admits.

To me, these responses are another sign of the ever-widening gap between left and right that eats up all common ground, even the rule of law. Political victory now takes priority over truth or justice – or perhaps more accurately: victory for my side is identical with truth and justice. To concede anything to the opposing side is seen, not as praiseworthy, but as betrayal.

My comments in what follows are nonpartisan: I want to point to what is true of both sides equally: the failure of dialogue and its replacement by a warfare mentality. This change affects even what we consider moral and admirable behaviour. It is not only a problem in the US. Ever since Brexit, things have become increasingly polarised in the UK as well.

That is what “culture war” means. War and dialogue are opposites; war is what happens when dialogue has failed.

Formerly in Western nations, rival political parties offered different means to achieve the same end: a flourishing society of justice, peace, prosperity, and freedom. Politicians disagreed but they respected each other. They had faith in the political process in which they all participated. Consider as an example the letter George Bush Senior left Bill Clinton after losing the 1992 US election.

“Your success now is our country’s success,” he wrote. “I am rooting hard for you. Good luck.”

The fact that he was now president was more important than which political party he belonged to.

In such a cohesive society, the legal system was a trusted arbitrator whose decisions would be accepted by victor and loser alike. This does not mean the system was perfect. Everyone knew that justice could sometimes miscarry. But the public did not see themselves as qualified to judge that either way. How could they expect to know more than the jury?

What we are witnessing now is a return to a more animal-like state in which the goal is that my team wins no matter what. If the arbitrator rules in favour of my tribe, they are seen as executing justice. If they rule against my tribe, their ruling must by definition be unjust.

That is what “culture war” means. War and dialogue are opposites; war is what happens when dialogue has failed because both sides have been unable even to “agree to disagree.”

Reasoned debate is seen as no longer effective in light of the vile underhanded tactics of the other side (but not, of course, of my side).

In dialogue, both sides aim to uncover the truth even if the truth turns out not to be what I wanted or thought. Prioritizing the truth means that I might realise I was wrong and concede the point, even at some material cost. For example, in a property dispute, I might become persuaded of the truth of my opponent’s case and give up my claim. That may be painful, but winning was less important than justice being done. In dialogue, both ‘sides’ are really on the same side because they both ultimately want the same thing.

In war, on the other hand, the goal is to defeat the enemy and it makes no difference whether they are right or wrong – or rather, it is assumed without question that they are wrong. If words are used in war, they are weapons in disguise, not meaningful communications.

This transformation from dialogue to war changes morality itself. You are now judged, not by the sincerity of your pursuit of truth, but by how loyal you are to your tribe. Even to take seriously the opposing position is viewed like reading a propaganda flyer dropped from a Nazi airplane: don’t even read it, it will only twist your mind!

Even seven years ago, fans of Jordan Peterson were fond of the phrase “all I want is to have a reasoned debate.” Regardless of your opinion of Peterson or of whether he exemplified this, those who used this phrase revealed a desire for dialogue rather than war. But today, many of those same followers no longer say that. Now they say, “the left is out to get us and must be stopped” and their counterparts say, “the right is out to get us and must be stopped.” Reasoned debate is seen as no longer effective in light of the vile underhanded tactics of the other side (but not, of course, of my side).

What do we want from our political opponents? We want them to listen to us and to take our arguments seriously.

What role can Christianity have in this polarised society? Sadly Christians are often seen as part of the problem rather than the solution: sold out to one political party. But we should be clear that Christianity does not sit neatly on either side of the divide. That does not mean Christians should be moderate or “centrist,” as if none of the issues matter much. Christianity comes down strongly on many things, but those are spread across the political spectrum. The way Christians vote depends on which issues they judge to be the most important or pressing in the current circumstances.

Second, Christians are called to make peace in time of war. “Blessed are the peacemakers,” Jesus said, “for they will be called children of God.” Christians are called build bridges rather than burn them, to seek common ground rather than trying to obliterate their opponents. This can start with showing love and respect for the person behind the argument; by celebrating our common humanity before trying to argue a point.

Third, it means exemplifying the kind of attitude we want to see in our opponents. “In everything do to others as you would have them do to you,” Jesus told his disciples. What do we want from our political opponents? We want them to listen to us and to take our arguments seriously. We want them to stop making cheap caricatures of us and represent us at our best. We want them to break out of their echo chambers and read news from a variety of political leanings. We want them to open themselves to persuasion and be prepared to change their minds. Jesus suggests leading by example and doing those things first.

Fourth and finally, the Christian’s allegiance is to truth and justice above any tribe, any agenda. The real political situation is almost certainly complex, with much to be said for and against both sides. There are awkward facts that don’t fit our own political position; let’s admit them. The Christian commitment to truth means being ready to acknowledge the weaknesses, failings, and faults on our own side before we point the finger. It’s hard, I know. I am not perfect at it myself. But it’s a more Christlike moral standard to aim for than that of the culture warrior who excels at demolishing the enemy.

Restoring dialogue won’t be easy and may come at a high personal cost. But the cost is greater if we don’t try. My own desire is to see Christians taking the lead in the restoration process and showing the world what Christlike peacemaking can accomplish.