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.  

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.

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief