Explainer
Comment
Death & life
6 min read

Dying well: what is neglected needs to be put right

How each of us can prepare ourselves and those we leave behind.

Matthew is the author of Your Last Gift – Getting Your Affairs in Order.

A group of grieving friends with their hands on each others backs.
The Good Funeral Guide on Unsplash.

In their November 2023 Theos report Love, Grief and Hope: Emotional responses to death and dying in the UK, Madeline Pennington and Nathan Mladin produce the surprising finding that, over the past year, one quarter of Brits had thought about their own death at least once a week. They go on to consider related emotional responses, chiefly fear. But, however often we think about death (maybe never), what do we do to prepare for the certainty of it, when we are used to making all sorts of preparations for practically everything else in our lives? 

First, we can, without being morbid, live our lives in broad terms in the consciousness that we are mortal (and, if you will forgive me as a classicist for delving into Latin, living ‘sub specie aeternitatis’ which means ‘from the standpoint of eternity’). Second, there are things we can do in terms of getting our house in order, both for our own peace of mind and for the benefit of our loved ones and those we leave behind. This is both spiritually and materially, though I would want to argue as a Christian that the whole of life (whether in this world or in the next) combines both aspects.  

Having had quite a feisty and competitive brother/sister relationship (with not a little ribbing from her about my own faith), we came to enjoy the warmest possible sibling love for and appreciation of each other. 

My dear sister Debbie died aged just 49 in July 2005. She had telephoned me only eight months before to tell me of the grim diagnosis of stage 4 lung cancer, saying that there were two things she needed to sort out: her will and her relationship with God. I replied (as a Christian and as a private client lawyer) that we could sort both those out. I referred Debbie to a vicar I knew in a church round the corner from where she lived. She was a bit hesitant, saying that, having kept God at arm’s length for all her life, wasn’t it a bit presumptuous now to be knocking on the vicar’s door? I suggested that she should think of it from his point of view, in terms of job satisfaction: that after all was precisely what he was there to do, telling people about God and helping them to find a personal faith.   

So that’s just what she did, coming to that faith herself following time with the vicar, with me and with other friends, in the February. And she died as a self-proclaimed Christian five months later. For me, the most precious thing apart from knowing that she would be with Jesus forever was this: having had quite a feisty and competitive brother/sister relationship (with not a little ribbing from her about my own faith), we came to enjoy the warmest possible sibling love for and appreciation of each other. 

Second, my mother, whose ideas of Christianity were never terribly clear, though she was a very faithful listener of my sermons, came to faith (as I saw it) just 12 days before she died in May 2010. It was at a home communion given by one of the local clergy team that, as she received the bread and/or the wine (I forget which), a most powerful voice within my spirit told me that she had received Jesus. And that night, by way of confirmation, my wife Annie had a very clear dream of my mother (it had to be her, wearing her most distinctive pink kaftan) dancing at the foot of the Cross. 

We lived just five minutes from Mum and, again, my early evening visits to see her, to chat, to read from the Bible and to pray were somehow transformed. While I am not sure that she had the same clear consciousness of having moved from darkness to light as had Debbie, I was quite clear that she had – and noted in my prayers at her funeral that at the end she had received Jesus. 

Third is my very close friend Jim who died aged just 67 in November 2020: I had talked to him about the Christian faith on a number of occasions, but he simply didn’t want to know. Then just one month before he died, in a telephone conversation with him in hospital Jim asked me to explain it, from a position of dire physical need and wanting to hear. I didn’t know how ill he was and, having explained the essence of Christian belief in very simple terms, prayed with him over the telephone.   

As it happens, Jim survived another month at home, during which time I was able to visit him four times and (now having been ordained) give him and his Christian wife Judi Home Communion, as well as pointing him to and talking about Mark’s Gospel and praying with him. His new faith led to a new intensity in our friendship. Jim was quite clear about his new relationship with Jesus, seeing himself as the lost sheep, on which I preached at his funeral, before (as a profoundly moving experience) conducting his burial. 

None of us of course knows for sure what happens after death. But Christians are by God’s grace given this ‘sure and certain hope’ of an eternity to be spent with Christ in God’s new creation. And it’s the clear Christian message that that eternity starts now, when we come to faith.  There’s a new relationship with God in Christ and, which is my experience, with our brothers and sisters in Christ, especially precious when those folk are close to us anyway.   

And then of course, perhaps most importantly, what is broken needs to be put right. 

That’s the spiritual aspect.  What of the material – by which I mean all the practical ‘stuff’: those who are left behind having to sort out our possessions, Inheritance Tax where payable and a whole host of other things?  It is a subject touched on in the Bible, perhaps surprisingly.  Consider Paul writing to Timothy that a person should provide for their relatives and especially close family), which I take it would include post-death as well as lifetime provision.  And then supremely of course Jesus in providing for his dear mother by entrusting her to his beloved disciple John.                        

In this context, I can do no more than make a few pointers, which with other suggestions I develop in my book.   

There are what I call ‘The Three Essentials’: Lasting Powers of Attorney in case of mental incapacity (for both property & financial affairs and health & welfare), Wills (including the all-important choice of executors) and funeral arrangements. Just 44 per cent of UK adults have made a will. 

Then there’s a host of other things, including appointing guardians for any minor children, providing for dependent relatives and making arrangements for pets.   What about access to digital assets, for example?  Let alone dealing with things about the home. 

And then of course, perhaps most importantly, what is broken needs to be put right - relationships, where forgiveness could be sought or given.  And, more widely, are there people you want to spend more time with, things you want to do or places to visit? 

My suggestion is that dying well embraces first of all the peace which comes from the belief that Jesus has died the death my sins deserve and consequently a restored relationship with God our Heavenly Father; and second, making what practical arrangements we can in advance, to ease the stress of those we leave behind in sorting out our affairs.  

 

Matthew Hutton is the author of Your Last Gift – Getting Your Affairs in Order.

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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