Review
Assisted dying
Life & Death
5 min read

The dying decision: choice, coercion and community

Plan 75 reveals a lot about our relationlessness, says Siân Brookes as she reviews the Japanese drama about medical assistance in dying

Sian Brookes is studying for a Doctorate at Aberdeen University. Her research focuses on developing a theological understanding of old age. She studied English and Theology at Cambridge University.

In a retirement home, a older person sings karaoke while the person behind waves a hand.
Chieko Baishô plays Michi.
Happinet.

“Being able to choose when my life will end provided me with peace of mind. With no feelings of doubt. She led a good life on her terms, people will say”.  

In Chie Hayakawa’s recent dystopian drama Plan 75, these are the words of a silver-haired, wrinkled woman in a promotional video for the eponymous plan – a government scheme which offers all over 75-year-olds the option of a pain-free death at the time of their choosing.  

And yet for Michi, an older lady toying with the decisions around Plan 75 it doesn’t really feel like it is her choice which matters at all. Whether it is the $1,000 grant offered as an incentive to die, the luxury amenities on offer at the Plan 75 facility promoted in leaflets and magazines, or the young person employed to gently guide the candidates towards their death (but whose real job it is to make sure they follow through with it), this is a world which has a clear agenda – to rid society of older people. Indeed, it is clear that this is a vision of a world which believes it is better for old people to die than to put financial burdens on the economy or their families, and this is a culture willing to subtly coerce individuals to accept and act on that belief.  

Plan 75 reveals an interesting point at the heart of the MAiD (Medical Assistance in Dying) debate. One of the primary reasons that MAiD is so attractive is the ability to take back control of one’s life and death, yet what happens when that seeming control isn’t really within the individual’s own control at all? For Plan 75, what is marketed as giving control back to older people, is really just a twist on a more sinister political policy to pressure individuals to sacrifice their “burdensome” lives for the greater good. Of course, this is a common argument for rejection of assisted suicide. This is the dangerous ‘slippery slope’, where MAiD begins as an option only for those who desperately need it to relieve intense physical suffering. Yet it quickly becomes a tool to remove people whose lives no longer seem worth living due to societal expectations and opinions, rather than any objective reality.  

Do we ever truly choose to die totally independent of the expectations of those around us? 

For many, this problem can be appeased through strict legal controls over MAiD – as long as the powers that be are regulated, MAiD is still OK. As long as it is the individual who maintains control over their own death (and not the state), the goal of personal autonomy is maintained and all is well. And yet this perspective fails to ask the question - is such control over our own death ever actually possible? Do we ever truly choose to die totally independent of the expectations of those around us? In a world which places so little value on old age, can older people really make choices unaffected by that (deeply flawed and inhumane) logic? And, indeed - the elephant in the room – no matter how much we try to control death, in the end is it not death that ultimately controls us? As fundamentally finite beings we can never escape it completely – it will always find us one way or another. Ultimately, we will all have to face the reality of death when it comes to us. Complete control and autonomy are never truly possible. 

In light of this unveiling, the possibility that complete choice and autonomy around death isn’t really an attainable goal, what better options might we pursue? 

Where previously we would find comfort and hope in being loved, known and held by others in our death, now all too often this isn’t the case. 

One thing is clear in Plan 75, the isolation and loneliness of older people in a society that has rejected them is deeply problematic. The movie primarily follows the stories of Michi, who lives alone with no family and Yukio Okabe, an older man totally estranged from his remaining family. Both face life, and are facing death, alone. We live in a world where increasingly we are forced to face death alone. When our final days and hours rarely happen in the family home, surrounded by our loved ones, but in faceless institutions devoid of lifelong meaningful relationship the sense that we are no longer doing death together as a society is acute. Where previously we would find comfort and hope in being loved, known and held by others in our death, now all too often this isn’t the case.  

At the same time, there is no doubt that our modern world is unceasingly committed to the ideal of individual personal agency and autonomy – “She led a good life on her terms”. As a myriad of philosophers and theologians have commented, belief in human autonomy has come to replace belief in God. And MAiD is one area which reveals this to be the case most acutely. Where previously we would turn to God to find comfort in the face of our finitude, instead now we turn to ourselves – the last hope we find in the face of death is our individual ability to control it.   

Death and health should be a corporate phenomenon – when one person is ill, all of society is ill. 

The German theologian Eberhard Jüngel described death in this broken world as “the occurrence of complete relationlessness”. In fact, Jüngel suggests that as human beings we are first and foremost made up of our relationships – we are truly human not by how we self-define in isolation but how we relate – how we relate to the God who made us, and how we relate to other people. This need for relationship is found most acutely in the face of death. As Ashley Moyse points out in his book, Resourcing Hope for Ageing & Dying in a Broken World, death and health should be a corporate phenomenon – when one person is ill, all of society is ill. And so, as death increasingly becomes the journey of the individual – when we face death in isolation from others and in isolation from God no wonder we feel such a strong desire towards control, towards ending our lives prematurely, towards science to help us avoid any more pain than we can bear alone. 

In Plan 75 we see glimmers of hope in the possibility of relationship. As Michi and Yukio find rare moments of human connection with a long-lost nephew, with a young person working for Plan 75, with another older person going through the same questions around mortality you can’t help but feel deeply uncomfortable with their choice to apply for the scheme. It is in the hints of love, physical touch, smiles exchanged, even a simple conversation shared between two people that suddenly MAiD seems so disconnected with the hope that life still has to offer through relationship. Perhaps if we could imagine a world where death became no longer an occurrence of complete relationlessness, but a locus for relational dependence, for familial connection, for leaning on God and not ourselves, the need for MAiD would feel a little less necessary. It would be a world with a little more hope. 

Article
Assisted dying
Life & Death
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. Radio 4’s 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.