The dying decision: choice, coercion and community

A Japanese drama about medical assistance in dying, Plan 75, reveals a lot about our relationlessness.

Sian Brookes

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 2023 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

Ageing

Care

Change

Death & life

20 September 2024

6 min read

A Tolkien poem helps a nurse understand the ravages of dementia

'Not all who wander are lost.'

Helen Cowan

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

An elderly woman wearing headphone looks up and to the side with a big smile.

Playlist for Life

Not all who wander are lost.

Often written on a care home wall, on an inspirational poster, these words are usually set against a forest background, or compass, for added effect. They have also been used as the title of a conference paper discussing so-called smart trackers for people with dementia, whilst, Not all who wander need be lost is the title of a concise guide to navigating the heartbreaking challenges when a loved one is diagnosed with Alzheimer’s disease or other dementia.

As a care home nurse for more than ten years, I have seen residents wander - not lost but “walking with purpose”, as it is sometimes known in the caring community. “Nobody gets up and walks without a reason,” says Suzanne Mumford, Care UK's Head of Nursing, Care and Dementia; perhaps they are easing pain, or boredom, or looking for something that they can’t describe. I remember residents exploring, enquiring into self-made mysteries solvable only by themselves, examining everything from door handles to another resident’s buttons, even escaping with surprising speed. Walking with them, often in silence, can bring a sense of relief, comfort and companionship.

What I didn’t know was that this is a quotation from a poem by JRR Tolkien, published in The Fellowship of the Ring seventy years ago. The actual line is - “Not all those who wander are lost”.

All that is gold does not glitter,
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.

From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.”

We first hear this poem in Chapter Ten of Book One, as Frodo reads it in the postscript of a letter from Gandalf. As I read it, the imagery of being lost, withered, frost-bitten, in darkness, burned and broken, speaks something, in poetic picture language, of the ravages of dementia, the harrowing losses, the valley of tears. It brings to mind residents unaware of familiar objects or surroundings, looking straight through loved ones without a flicker of recognition, losing also language, continence, mobility and the ability to swallow.

The TV presenter Fiona Philips recalled an agonising decline in her mother as she succumbed to Alzheimer’s, describing how, in the final stages, her mother “spent whole chunks of time just sitting and staring ahead, only able to give out a series of sounds”. Fiona herself now lives with dementia. “'It’s devastated my family and it’s the biggest health and social care challenge we face as a country,” she says.

I once interviewed retired doctor Jennifer Bute, who lives with dementia. She talked of time travel (perceiving herself as living in a time from her past); disorientation to place and person; frightening hallucinations when old memories are seemingly ‘unlocked’; and ‘emotional unzipping’ when agitation and anxiety increase, often in the late afternoon or evening in something poorly understood as a symptom, known as ‘sundowning’.

Yet there is something more to this poem – each of the pains has a promise – not all who wander are lost; the old that is strong does not wither; and, most poignantly, deep roots are not touched by the frost. In dementia, it is true that deep roots are untouched, that an enduring aspect of a person’s identity never truly withers, though it may be mostly unseen. Something remains. Oliver Sacks the famous neurologist emphasised that, even in the late stages of Alzheimer’s, the person is still ‘alive inside’ (the inspiring documentary with this title is recommended). In stunning real-life stories, he has shown how music appears to ‘call back the self’, awakening moods, memories and thoughts that had seemingly been lost. He refers to music’s extraordinary ‘neural robustness’ and describes one man, unable to tie his tie or find his way to the stage, yet able to perform a perfect piano solo. In one life-affirming, must-watch, tear-jerking video, gospel music was shown to enliven, calm, focus and engage a man simply known as Henry.

Watch Henry

Singing can “provide islands of arousal and awareness like nothing else can”, according to Alicia Clair, Professor of Music Therapy. I’ve seen singing bring the person into the present for a passing moment, illuminating a face that seemed far away. One otherwise-silent lady completed the chorus of ‘Daisy, Daisy’ before descending into dementia again. Others have laughed, clapped, danced, embraced and even shed a silent tear during music therapy sessions, when music elicits memory. Doll therapy meanwhile has sometimes restored and revealed a sense of nurture, purpose, care and pride, with residents feeding their new friend before accepting their own food, folding its clothes and taking care of it cradled in their arms. Though it divides opinion, a doll can preserve dignity if it de-escalates agitation or engagement in physical or verbal abuse; a sense of dignity also comes from the person being able momentarily to give care rather than receive it.

“From the ashes a fire shall be woken, A light from the shadows shall spring; Renewed shall be blade that was broken,” continues Tolkien's poem, and, though not the original intention, these powerful images of renewal and restoration paint a picture of something known as “paradoxical lucidity”, or unexpected cognitive lucidity and communication in some patients with severe dementia, especially around the time of death (though sometimes long before).

Anecdotes are recorded of “unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiologic dementing process”. Some scientists are seeing them as a paradigm shift in the understanding and perhaps even treatment of dementia. I will never forget when a woman in the late stages of dementia, with little spoken language, was brought back to the nursing home weeks after hospital admission; she had been perilously ill. With bright eyes, she took my arm and, as if the mist had cleared for a moment, spoke warmest words of thanks to me for helping her on the day she collapsed. In another fleeting and irreproducible moment, a lady wished me happy birthday, before continuing her silent walk around the home. Witnessing such an event is ethically and emotionally transformative.

The concept of remaining ‘alive inside’ even when abilities, language and memory are eroded by dementia is taken to the next level in Christianity, which teaches that life continues even after death itself. The Bible speaks of new life beyond the grave; the fire shall be woken, a light shall spring. And there will be a crown (and the gold will glitter). The Crown of Life is referred to, being bestowed upon "those who persevere under trials." Dementia is one of life’s severest trials; a cross to bear. In the 1912 hymn “The Old Rugged Cross”, another cross is spoken of, being the cross of Christ at his crucifixion. Clinging to that cross, living out a Christian life, the hymnwriter wrote of “exchanging the cross for a crown” at life’s end. After ashes, hope awaits the Christian.

Playlist for Life is a charity encouraging people to create playlists for people living with dementia.

Playlist for Life