Article
Assisted dying
Care
Comment
Death & life
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.
An image of a woman wearing formal clothing is overlaid by a BBC logo, a programme logo, a sound wave illustration and a caption.
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
Joy
Psychology
5 min read

Dopamine-ing ourselves dilutes the real power of joy

Ditch being happy all the time.

Natalie produces and narrates The Seen & Unseen Aloud podcast. She's an Anglican minister and a trained actor.

Cartoon character Joy looks up with arms held open.
Inside Out's Joy.
Disney.

As I write this, I’m looking out of my window at endless grey. It has been raining almost constantly for several days. The garden is waterlogged, the apples are going mouldy on the tree and my dog, who has just come in, is sitting next to me and smelling of, well, wet dog. And it all looks pretty gloomy.  

One of my most climbed upon soap boxes is the oppressive myth of our age/western culture that we are all supposed to be happy all the time. If we’re not living our best life and posting photos of our happiness on social media, then shame on us. There seems to be a socially acceptable dopamine addiction running rampant – each swipe, like and tweet feeding our habit. 

As someone who lives with the albatross of depression weighing constantly around my neck, I find this compulsory pursuit of very public happiness somewhat trying. And call me Eeyore if you will, but I’d like to point out that sometimes it rains and there isn’t a rainbow. Just puddles. 

There is a place for sorrow and disappointment and frustration in real life, and dopamine-ing ourselves out of those experiences dilutes the real power of joy. 

I haven’t watched the new Inside Out film yet (See Henna Cundill’s great article on it) but the first one is a firm family favourite. It’s so deeply insightful and brilliantly unDisney. For anyone who hasn’t watched it yet, it’s a Disney animation of the adventures of the five core emotions (Fear, Anger, Joy, Disgust and Sadness) belonging to a young girl coping with moving with her parents to live in a new city. 

Happiness is candy floss and joy is a strong cup of tea. 

The main character is Joy. And she’s all about the happy. She refuses to allow Riley (the girl whose emotions they are) to be anything but happy. And that’s the set-up of the film. Joy fighting against the odds to keep Riley happy, even when she’s going through some really tough life stuff. And by the end of the film, it’s Joy who has grown because she recognises that Sadness has an important role in Riley’s life and that when Sadness takes the lead, Joy can join in, honestly, unsentimentally and sincerely. 

I can’t tell you how much I enjoyed seeing Joy’s bouncy, oppressive positivity being acknowledged as really annoying.  

The real strength of the film is that Joy grows from a character that I would call Happy into real Joy. Because, based on no good reasons at all, I have always thought of Joy as a more mature relative to happiness. To me, happiness is lighter, frothier and joy has greater depth and robustness. Happiness is candy floss and joy is a strong cup of tea. Happiness is still naïve while joy has been around the block a few times yet still hangs in there. Happiness is a powerful feeling that eclipses all else. Joy is mature enough to be in the same room as Sadness. 

You see, I also think of joy as a choice, not just a happy feeling. Like thousands of other people, I have benefited hugely from Cognitive Behavioural Therapy (CBT) which says that while you can’t choose your feelings, you can choose your thoughts. And it turns out that our feelings are reactions to our thoughts, not the other way around. 

For instance, if you are woken up in the middle of the night by a loud crash, how would you feel? If you feel scared, it’s probably because your first thought is that a burglar has broken into your home. If you turn over and go back to sleep, it’s probably because you know that the cat has knocked something off the kitchen table, again. Our feelings come after our thoughts, not the other way around. Which changes everything. 

We can’t tell ourselves to be happy, to be excited, to not be afraid. But we can choose our thoughts, what we allow to dwell in our minds. The pursuit of happiness then becomes about training the mind rather than mindlessly reaching for the next “feel good” dopamine hit.  

Joy grows up. She starts out bubblegum-happy-at-all-costs-annoying. And she matures into someone who’s patient and compassionate and strong. 

CBT rose to fame, as it were, during the latter years of the twentieth century and more recently, a lot of research has gone into the correlation of CBT within diverse religious frameworks, including Judaism, Taoism and predominantly, Christianity. The evidence suggests that religious belief has considerable positive impact on mental well-being and psychology. It seems that there is real joy to be found in the Unseen. 

And I don’t think that’s a surprise. The Bible is full of CBT once you start looking for it. For example, St Paul wrote a letter to a church in Philippi, while he was chained up in a prison cell. I think it’s fair to say he wasn’t Insta-ready yet he says (italicised translation my own) "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of living my best life in any and every situation, whether well fed or hungry, whether living in plenty or in want.” Isn’t that a secret we’d all like to learn? How to have real joy that is completely independent from our circumstances? 

St Paul is not saying don’t worry, be happy. He isn’t saying pretend everything is ok, put your head in the sand and act as if you haven’t a care in the world. He is far more realistic than that. He knows better than most people that real life is very complicated and often very painful. He’s saying that whatever our circumstances, we have a choice. A choice to let ourselves drown in anxiety and sorrow or to fill our minds with, “whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”  He is of course talking about the goodness and faithfulness of God and what pours out as a result of God’s lovingkindness. When I fill my mind, when I choose to think about such things, it means there is less room for despair and Joy has the space to dance.  

And this is why I think Inside Out is so good. Joy grows up. She starts out bubblegum-happy-at-all-costs-annoying. And she matures into someone who’s patient and compassionate and strong. Joy can hold you while you give airtime to Sadness, Disgust, Fear and even Anger. And she’s there to celebrate and commiserate with you when that’s done. This may not meet the need for a party-popper-emoji-style happiness, but I for one say, Yes, please, can I have some of that?