Article
Assisted dying
Care
Creed
Death & life
5 min read

“Shortening death” sidesteps the real battle

We need to do more than protest bad deaths, we need to protest death itself, it's more than biological.

Tom has a PhD in Theology and works as a hospital physician.

A hand drapes over the side of an object out of shot.
Michael Schaffler on Unsplash.

What is “death”? It’s surprising the term has received little attention in the assisted dying discussion so far, because more hangs on the answer than one might expect. At a press briefing, Kim Leadbeater MP stated that the assisted dying bill she is proposing is about “shortening death, not ending life.” 

But what meaning does “death” have here? 

The current bill defines neither “death” nor “dying.” Granted, it implies a biological definition. The bill speaks of administering approved substances to “cause that person’s death” and of capacity and decision-making around “ending life.” These fit the understanding of death with which the medical profession operates—death is the point in time when the combined functions required for human life cease. It is a one-time event, the end of physiology, and so is recognised by a combination of physical signs.  

Death, then, is a diagnosis. 

So, too, “dying”—though here the waters are murkier. Setting aside sudden deaths, medical talk of dying takes us out of binary territory. Dying speaks of a process, of the “terminal phase.” Within medicine a diagnosis of dying heralds the expectation that a person’s death will occur within hours or days. And so, the focus shifts. The task of care is no longer the coordinated work of investigation, preserving life, and treating symptoms. Now attention is on bringing relief to the process of dying. 

The bill seems wise to much of this. Though definitions of death and dying are absent, the bill does define terminal illness—“an inevitably progressive condition which cannot be reversed by treatment” and from which the event of death “can reasonably be expected within 6 months.” And so, it clearly distinguishes terminal illness from biological death and, implicitly, from dying. 

Of course, terminal illness and biological death are related. Terminal illness is irreversible, and where terminal illness leads is death. Or, you might say, it leads to the end of life. Apart from the timescale of six months, the same may be said of ageing: ageing is irreversible, and where ageing leads is death. This is why Kim Leadbeater’s comment was puzzling to me. I suspect what she really meant was “shortening terminal illness.” If so, this is confusing because, within the framework of the bill, “shortening terminal illness” and “ending life” are identical. It seems she was getting at something else.

“It seems odd that in the name of eliminating suffering, we eliminate the sufferer.” 

Stanley Hauerwas

I suspect Kim Leadbeater was echoing a conviction at home in the Christian faith. That is, try as we might to keep death at a distance and restrict it to a faraway frontier, the life of human beings involves death. I don’t simply mean the biological death we witness—the deaths of friends, relatives, or even strangers. I mean death intrudes upon the way we experience life. Death is more than simply biological. 

The fear of death belongs in this category. For some, the impending loss of relationships and joys casts a shadow over life, giving birth to apprehension. Death is not simply a factual matter but something that exerts power and influence. Or take disease and illness. Built into the notion of terminal illness is the idea that the sickness borne by a human body will ultimately bring about that body’s death. That body already speaks of its death. Death is making itself felt in advance. 

And so, death is more than a biological event. Even living things can bear the marks of death. 

This is no novel claim. The creation account recorded in the Bible says that in the beginning, there was good. But an intruder appears. In the wake of humanity’s choice to go its own way rather than the way of its Maker, death arrives on the scene. And death is an imposter—not simply a physiological fact at the end of the road, but a destructive and alien presence in God’s good world. 

Understood in this way, death is not something that God intends humans simply submit to. Death is something to protest. This is why Kim Leadbeater’s comment gets at something important: this kind of death should be protested. The marks of death should not be accommodated, because they do not belong to the goodness of what God has made. 

At the heart of the Christian faith is God’s own ultimate protest against the force of death. Christians celebrate that God himself came in the man Jesus to “destroy death.” This is plainly more than biological. Jesus came to free humanity from the entirety of death’s grip. Hence why, when Jesus speaks of “eternal life” he means more than endless biological existence. He means liberation from all the havoc that death brings to bear within God’s world. To the Christian imagination, the power of death must be protested because God protested it first. 

The question is how to protest death. Within the framework of the bill, shortening death or terminal illness is identical with ending life. This is the only form protesting death can take. 

But the Christian faith makes a far more radical claim: God alone overcame death by dying. This is the point: Jesus was the one—the only one—who emerged resurrected victor in the contest with the power of death. In seeing his death and resurrection, an unshakeable hope emerges. Death is not the victor. And this hope stands above our present experience of death—in whatever form—and, at the same time, calls us to join the protest. 

Ethicist Stanley Hauerwas once wrote: “it seems odd that in the name of eliminating suffering, we eliminate the sufferer.” I have deliberately avoided discussing suffering, not least because it would take me too far afield. Yet Hauerwas has put his finger on what I’m getting at. Protesting death—in the big sense—belongs to the Christian faith. Protesting suffering and pain, economic and racial injustice, fractured relationships and broken societies, are all part of this protest. But can eliminating those who live within the shadow of death be part of this protest? I think not. The Christian faith believes there is only one who can overcome death in this way, and that is God himself—who has already done it.

Review
Books
Care
Comment
Psychology
7 min read

We don’t have an over-diagnosis problem, we have a society problem

Suzanne O’Sullivan's question is timely
A visualised glass head shows a swirl of pink across the face.
Maxim Berg on Unsplash.

Rates of diagnoses for autism and ADHD are at an all-time high, whilst NHS funding remains in a perpetual state of squeeze. In this context, consultant neurologist Suzanne O’Sullivan, in her recent book The Age of Diagnosis, asks a timely question: can getting a diagnosis sometimes do more harm than good? Her concern is that many of these apparent “diagnoses” are not so much wrong as superfluous; in her view, they risk harming a person’s sense of wellbeing by encouraging self-imposed limitations or prompting them to pursue treatments that may not be justified. 

There are elements of O-Sullivan’s argument that I am not qualified to assess. For example, I cannot look at the research into preventative treatments for localised and non-metastatic cancers and tell you what proportion of those treatments is unnecessary. However, even from my lay-person’s perspective, it does seem that if the removal of a tumour brings peace of mind to a patient, however benign that tumour might be, then O’Sullivan may be oversimplifying the situation when she proposes that such surgery is an unnecessary medical intervention.  

But O’Sullivan devotes a large proportion of the book to the topics of autism and ADHD – and on this I am less of a lay person. She is one of many people who are proposing that these are being over diagnosed due to parental pressure and social contagion. Her particular concern is that a diagnosis might become a self-fulfilling prophecy, limiting one’s opportunities in life: “Some will take the diagnosis to mean that they can’t do certain things, so they won’t even try.” Notably, O’Sullivan persists with this argument even though the one autistic person whom she interviewed for the book actually told her the opposite: getting a diagnosis had helped her interviewee, Poppy, to re-frame a number of the difficulties that she was facing in life and realise they were not her fault.  

Poppy’s narrative is one with which we are very familiar at the Centre for Autism and Theology, where our team of neurodiverse researchers have conducted many, many interviews with people of all neurotypes across multiple research projects. Time and time again we hear the same thing: getting a diagnosis is what helps many neurodivergent people make sense of their lives and to ask for the help that they need. As theologian Grant Macaskill said in a recent podcast:  

“A label, potentially, is something that can help you to thrive rather than simply label the fact that you're not thriving in some way.” 

Perhaps it is helpful to remember how these diagnoses come about, because neurodivergence cannot be identified by any objective means such as by a blood test or CT scan. At present the only way to get a diagnosis is to have one’s lifestyle, behaviours and preferences analysed by clinicians during an intrusive and often patronising process of self-disclosure. 

Despite the invidious nature of this diagnostic process, more and more people are willing to subject themselves to it. Philosopher Robert Chapman looks to late-stage capitalism for the explanation. Having a diagnosis means that one can take on what is known as the “sick role” in our societal structures. When one is in the “sick role” in any kind of culture, society, or organisation, one is given social permission to take less personal responsibility for one’s own well-being. For example, if I have the flu at home, then caring family members might bring me hot drinks, chicken soup or whatever else I might need, so that I don’t have to get out of bed. This makes sense when I am sick, but if I expected my family to do things like that for me all the time, then I would be called lazy and demanding! When a person is in the “sick role” to whatever degree (it doesn’t always entail being consigned to one’s bed) then the expectations on that person change accordingly.  

Chapman points out that the dynamics of late-stage capitalism have pushed more and more people into the “sick role” because our lifestyles are bad for our health in ways that are mostly out of our own control. In his 2023 book, Empire of Normality, he observes,  

“In the scientific literature more generally, for instance, modern artificial lighting has been associated with depression and other health conditions; excessive exposure to screen time has been associated with chronic overstimulation, mental health conditions, and cognitive disablement; and noise annoyance has been associated with a twofold increase in depression and anxiety, especially relating to noise pollution from aircraft, traffic, and industrial work.” 

Most of this we cannot escape, and on top of it all we live life at a frenetic pace where workers are expected to function like machines, often subordinating the needs and demands of the body. Thus, more and more people begin to experience disablement, where they simply cannot keep working, and they start to reach for medical diagnoses to explain why they cannot keep pace in an environment that is constantly thwarting their efforts to stay fit and well. From this arises the phenomenon of “shadow diagnoses” – this is where “milder” versions of existing conditions, including autism and ADHD, start to be diagnosed more commonly, because more and more people are feeling that they are unsuited to the cognitive, sensory and emotional demands of daily working life.  

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help.

O’Sullivan rightly observes that some real problems arise from this phenomenon of “shadow diagnoses”. It does create a scenario, for example, where autistic people who experience significant disability (e.g., those who have no perception of danger and therefore require 24-hour supervision to keep them safe) are in the same “queue” for support as those from whom being autistic doesn’t preclude living independently. 

But this is not a diagnosis problem so much as a society problem – health and social care resources are never limitless, and a process of prioritisation must always take place. If I cut my hand on a piece of broken glass and need to go to A&E for stiches, I might find myself in the same “queue” as a 7-year-old child who has done exactly the same thing. Like anyone, I would expect the staff to treat the child first, knowing that the same injury is likely to be causing a younger person much more distress. Autistic individuals are just as capable of recognising that others within the autism community may have needs that should take priority over their own.   

What O’Sullivan overlooks is that there are some equally big positives to “shadow diagnoses” – especially as our society runs on such strongly capitalist lines. When a large proportion of the population starts to experience the same disablement, it becomes economically worthwhile for employers or other authorities to address the problem. To put it another way: If we get a rise in “shadow diagnoses” then we also get a rise in “shadow treatments” – accommodations made in the workplace/society that mean everybody can thrive. As Macaskill puts it:  

“Accommodations then are not about accommodating something intrinsically negative; they're about accommodating something intrinsically different so that it doesn't have to be negative.” 

This can be seen already in many primary schools: where once it was the exception (and highly stigmatised) for a child to wear noise cancelling headphones, they are now routinely made available to all students, regardless of neurotype. This means not only that stigma is reduced for the one or two students who may be highly dependent on headphones, but it also means that many more children can benefit from a break from the deleterious effects of constant noise. 

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help. I suspect the rise in people identifying as neurodivergent reflects a latent cry of “Stop the world, I want to get off!” This is not to say that those coming forward are not autistic or do not have ADHD (or other neurodivergence) but simply that if our societies were gentler and more cohesive, fewer people with these conditions would need to reach for the “sick role” in order to get by.  

Perhaps counter-intuitively, if we want the number of people asking for the “sick role” to decrease, we actually need to be diagnosing more people! In this way, we push our capitalist society towards adopting “shadow-treatments” – adopting certain accommodations in our schools and workplaces as part of the norm. When this happens, there are benefits not only for neurodivergent people, but for everybody.

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