Article
Assisted dying
Comment
4 min read

Assisted Dying logic makes perfect sense but imposes a dreadful dilemma

The case for assisted dying appeals to choice and autonomy, yet not all choices are good. It means vast numbers of people will face a terrible choice as their life nears its end.

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

A black and white picture shows a woman head and shoulders, she is looking up and to the side in an unsure way.
Anastasiya Badun on Unsplash.

Two broad cultural trends have led us to our current debate over assisted suicide. 

One is the way consumer choice has come to be seen as the engine of successful economies. Emerging from Adam Smith’s theories of rational choice based on self-interest, given a boost by Reaganomics and Thatcherite thinking in the 1990s, the provision of a range of choice to the consumer is usually argued, with some logic, as key to the growth of western economies and the expansion of freedom.  

The other is the notion of individual autonomy. Articulated especially in the past by figures such as John Locke and John Stuart Mill, the idea that individuals should be free to choose to dispose of their property, their time and their talents as they choose, as long as they don’t harm anyone else, has become standard moral fare in the modern world.  

Put these two together, and the logic of assisted dying makes perfect sense. What can be wrong with offering someone a choice? Why should the state restrict individual freedom to end your life in the way you might decide to do so? 

Yet expanding choice is not always good. Forcing an employee to choose between betraying a colleague or losing their job is not a fair choice. There are some choices that are unfair to impose upon people.  

Assisted dying will lead us to this kind of choice. Imagine a woman in her eighties, living in a home which is her main financial asset, and which she hopes to leave to her children when she dies. She contracts Parkinson’s or dementia, which will not kill her for some time, but will severely limit her ability to live independently (and remember about of third of the UK population will need some kind of longer-term care assistance as we get older). At present, her only options are to be cared for by her children, or to sell her house to pay for professional care.  

With the assisted suicide bill, a third option comes into play – to end it all early and save the family the hassle - and the money. If the bill passes, numerous elderly people will be faced with an awful dilemma. Do I stay alive, watch the kids’ inheritance disappear in care costs, or land myself on them for years, restricting their freedom by needing to care for me? Or do I call up the man with the tablets to finish it soon? Do I have a moral duty to end it all? At present, that is not a choice any old person has to make. If the bill passes, it will be one faced by numerous elderly, or disabled people across the country. 

Even though the idea may have Christian roots, you don’t have to be religious to believe the vulnerable need to be protected

Of course, supporters of the bill will say that the proposed plan only covers those who will die within six months, suffering from an “inevitably progressive condition which cannot be reversed by treatment.” Yet do we really think it will stay this way? Evidence from most other countries that have taken this route suggests that once the train leaves the station, the journey doesn’t end at the first stop - it usually carries on to the next. And the next. So, in Canada, a bill that initially allowed for something similar was changed within five years to simply requiring the patient to state they lived with an intolerable condition. From this year, there is a proposal on the table that says a doctor’s note saying you have a mental illness is enough. In the same time frame, 1,000 deaths by assisted dying in the first year has become 10,000 within five years, accounting for around 1 in 20 of all deaths in Canada right now. Some MPs in the UK are already arguing for a bill based on ‘unbearable suffering’ as the criterion. Once the train starts, there is no stopping it. The logic of individual choice and personal autonomy leads inexorably in that direction.  

Of course, some people face severe pain and distress as they die, and everything within us cries out to relieve their suffering. Yet the question is what kind of society do we want to become? One where we deem some lives worth living and others not? Where we make numerous elderly people feel a burden to their families and feel a responsibility to die? In Oregon, where Assisted Dying is legal, almost half of those who opted for assisted dying cited fear of being a burden as a factor in their decision. Or would we prefer one where the common good is ultimately more important than individual choice, and where to protect the vulnerable, we find other ways to manage end of life pain, putting resources into developing palliative care and supporting families with dependent members – none of which will happen if the option of assisted dying is available.  

Even though the idea may have Christian roots, you don’t have to be religious to believe the vulnerable need to be protected. Changing the law might seem a small step. After all, doctors routinely administer higher doses of morphine which alleviate pain and allow a natural death to take its course. Yet that is a humane and compassionate step to take. To confront numerous people, elderly, disabled and sick with a dreadful dilemma is one we should not impose upon them.  

Article
Ageing
Care
Change
Death & life
6 min read

A Tolkien poem helps a nurse understand the ravages of dementia

'Not all who wander are lost.'

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.