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

Article

Assisted dying

Care

Culture

Death & life

13 November 2024

8 min read

The deceptive appeal of assisted dying changes medical practice

In Canada the moral ethos of medicine has shifted dramatically.

Ewan Goligher

Ewan is a physician practising in Toronto, Canada.

a doctor consults a tablet against the backdrop of a Canadian flag.

Once again, the UK parliament is set to debate the question of legalizing euthanasia (a traditional term for physician-assisted death). Political conditions appear to be conducive to the legalization of this technological approach to managing death. The case for assisted death appears deceptively simple—it’s about compassion, respect, empowerment, freedom from suffering. Who can oppose such positive goals? Yet, writing from Canada, I can only warn of the ways in which the embrace of physician-assisted death will fundamentally change the practice of medicine. Reflecting on the last 10 years of our experience, two themes stick out to me—pressure, and self-deception.

I still remember quite distinctly the day that it dawned on me that the moral ethos of medicine in Canada was shifting dramatically. Traditionally, respect for the sacredness of the patient’s life and a corresponding absolute prohibition on deliberately causing the death of a patient were widely seen as essential hallmarks of a virtuous physician. Suddenly, in a 180 degree ethical turn, a willingness to intentionally cause the death of a patient was now seen as the hallmark of patient-centered doctor. A willingness to cause the patient’s death was a sign of compassion and even purported self-sacrifice in that one would put the patient’s desires and values ahead of their own. Those of us who continued to insist on the wrongness of deliberately causing death would now be seen as moral outliers, barriers to the well-being and dignity of our patients. We were tolerated to some extent, and mainly out of a sense of collegiality. But we were also a source of slight embarrassment. Nobody really wanted to debate the question with us; the question was settled without debate.

Yet there was no denying the way that pressure was brought to bear, in ways subtle and overt, to participate in the new assisted death regime. We humans are unavoidably moral creatures, and when we come to believe that something is good, we see ourselves and others as having an obligation to support it. We have a hard time accepting those who refuse to join us. Such was the case with assisted death. With the loudest and most strident voices in the Canadian medical profession embracing assisted death as a high and unquestioned moral good, refusal to participate in assisted death could not be fully tolerated.

We deceive ourselves if we think that doctors have fully accepted that euthanasia is ethical when only very few are actually willing to administer it.

Regulators in Ontario and Nova Scotia (two Canadian provinces) stipulated that physicians who were unwilling to perform the death procedure must make an effective referral to a willing “provider”. Although the Supreme Court decision made it clear in their decision to strike down the criminal prohibition against physician-assisted death that no particular physician was under any obligation to provide the procedure, the regulators chose to enforce participation by way of this effective referral requirement. After all, this was the only way to normalize this new practice. Doctors don't ordinarily refuse to refer their patients for medically necessary procedures; if assisted death was understood to be a medically necessary good, then an unwillingness to make such referral could not be tolerated.

And this form of pressure brings us to the pattern of deception. First, it is deceptive to suggest that an effective referral to a willing provider confers no moral culpability on the referring physician for the death of the patient. Those of us who objected to referring the patient were told that like Pilate, we could wash our hands of the patient’s death by passing them along to someone else who had the courage to do the deed. Yet the same regulators clearly prohibited referral for female genital mutilation. They therefore seemed to understand the moral responsibility attached to an effective referral. Such glaring inconsistencies about the moral significance of a referral suggests that when they claimed that a referral avoided culpability for death by euthanasia, they were deceiving themselves and us.

The very need for a referral system signifies another self-deception. Doctors normally make referrals only when an assessment or procedure lies outside their technical expertise. In the case of assisted death, every physician has the requisite technical expertise to cause death. There is nothing at all complicated or difficult or specialized about assessing euthanasia eligibility criteria or the sequential administration of toxic doses of midazolam, propofol, rocuronium, and lidocaine. The fact that the vast majority of physicians are unwilling to perform this procedure entails that moral objection to participation in assisted death remains widespread in the medical profession. The referral mechanism is for physicians who are “uncomfortable” in performing the procedure; they can send the patient to someone else more comfortable. But to be comfortable in this case is to be “morally comfortable”, not “technically comfortable”. We deceive ourselves if we think that doctors have fully accepted that euthanasia is ethical when only very few are actually willing to administer it.

We deceived ourselves into thinking that assisted death is a medical therapy for a medical problem, when in fact it is an existential therapy for a spiritual problem.

There is also self-deception with respect to the cause of death. In Canada, when a patient dies by doctor-assisted death, the person completing the death certificate is required to record the cause of death as the reason that the patient requested euthanasia, not the act of euthanasia per se. This must lead to all sorts of moments of absurdity for physicians completing death certificates—do patients really die from advanced osteoarthritis? (one of the many reasons patients have sought and obtained euthanasia). I suspect that this practice is intended to shield those who perform euthanasia from any long-term legal liability should the law be reversed. But if medicine, medical progress, and medical safety are predicated on an honest acknowledgment about causes of death, then this form of self-deception should not be countenanced. We need to be honest with ourselves about why our patients die.

There has also been self-deception about whether physician-assisted death is a form of suicide. Some proponents of assisted death contend that assisted death is not an act of deliberate self-killing, but rather merely a choice over the manner and timing of one's death. It's not clear why one would try to distort language this way and deny that “physician-assisted suicide” is suicide, except perhaps to assuage conscience and minimize stigma. Perhaps we all know that suicide is never really a form of self-respect. To sustain our moral and social affirmation of physician-assisted death, we have to deny what this practice actually represents.

There has been self-deception about the possibility of putting limits around the practice of assisted death. Early on, advocates insisted that euthanasia would be available only to those for whom death was reasonably foreseeable (to use the Canadian legal parlance). But once death comes to be viewed as a therapeutic option, the therapeutic possibilities become nearly limitless. Death was soon viewed as a therapy for severe disability or for health-related consequences of poverty and loneliness (though often poverty and loneliness are the consequence of the health issues). Soon we were talking about death as a therapy for mental illness. If beauty is in the eye of the beholder, then so is grievous and irremediable suffering. Death inevitably becomes therapeutic option for any form of suffering. Efforts to limit the practice to certain populations (e.g. those with disabilities) are inevitably seen as paternalistic and discriminatory.

There has been self-deception about the reasons justifying legalization of assisted death. Before legalization, advocates decry the uncontrolled physical suffering associated with the dying process and claim that prohibiting assisted death dehumanizes patients and leaves them in agony. Once legalized, it rapidly becomes clear that this therapy is not for physical suffering but rather for existential suffering: the loss of autonomy, the sense of being a burden, the despair of seeing any point in going on with life. The desire for death reflects a crisis of meaning. We deceived ourselves into thinking that assisted death is a medical therapy for a medical problem, when in fact it is an existential therapy for a spiritual problem.

We have also deceived ourselves by claiming to know whether some patients are better off dead, when in fact we have no idea what it's like to be dead. The utilitarian calculus underpinning the logic of assisted death relies on the presumption that we know what it is like before we die in comparison to what it is like after we die. In general, the unstated assumption is that there is nothing after death. This is perhaps why the practice is generally promoted by atheists and opposed by theists. But in my experience, it is very rare for people to address this question explicitly. They prefer to let the question of existence beyond death lie dormant, untouched. To think that physicians qua physicians have any expertise on or authority on the question of what it’s like to be dead, or that such medicine can at all comport with a scientific evidence-based approach to medical decision-making, is a profound self-deception.

Finally, we deceive ourselves when we pretend that ending people’s lives at their voluntary request is all about respecting personal autonomy. People seek death when they can see no other way forward with life—they are subject to the constraints of their circumstances, finances, support networks, and even internal spiritual resources. We are not nearly so autonomous as we wish to think. And in the end, the patient does not choose whether to die; the doctor chooses whether the patient should die. The patient requests, the doctor decides. Recent new stories have made clear the challenges for practitioners of euthanasia to pick and choose who should die among their patients. In Canada, you can have death, but only if your doctor agrees that your life is not worth living. However much these doctors might purport to act from compassion, one cannot help see a connection to Nazi physicians labelling the unwanted as “Lebensunwortes leben”—life unworthy of life. In adopting assisted death, we cannot avoid dehumanizing ourselves. Death with dignity is a deception.

These many acts of self-deception in relation to physician-assisted death should not surprise us, for the practice is intrinsically self-deceptive. It claims to be motivated by the value of the patient; it claims to promote the dignity of the patient; it claims to respect the autonomy of the patient. In fact, it directly contravenes all three of those goods.

It degrades the value of the patient by accepting that it doesn't matter whether or not the patient exists.

It denies the dignity of the patient by treating the patient as a mere means to an end—the sufferer is ended in order to end the suffering.

It destroys the autonomy of the patient because it takes away autonomy. The patient might autonomously express a desire for death, but the act of rendering someone dead does not enhance their autonomy; it obliterates it.

Yet the need for self-deception represents the fatal weakness of this practice. In time, truth will win over falsehood, light over darkness, wisdom over folly. So let us ever cling to the truth, and faithfully continue to speak the truth in love to the dying and the living. Truth overcomes pressure. The truth will set us free.