Why do some people choose to die alone?

End-of-Life Accompaniment and Lone Deaths

Nobody chooses to die alone, right? Wrong. Some people plan very carefully to make sure they die alone. But why? Helping answer that question is sociologist Dr Glenys Caswell from Nottingham University.

This interview was originally recorded for our podcast: Episode 23 End-of-Life Accompaniment and Lone Deaths.

You seem perfectly placed to talk to us about this because, you know, we make that big presumption that it would be such an awful, dreadful thing if one was to die alone. And I know, obviously, you’ve spent pretty much a couple of years looking at the social management of lone deaths. So the question, I think, to begin with is what have you discovered are the reasons that a person might actually choose to die?

Now that’s really quite a complicated question to answer I think. What I have discovered over the last years while researching dying alone and people’s choices and decisions around how they wished to end their lives, is that dying alone is actually a very complex thing.

When we talk about it in normal, everyday conversation, we talk about it as if there’s nothing unexpected about it – we know what we’re talking about when we say someone dies alone – we know what we mean. But once you actually start to look at this and unpick it a bit, I came to realise that in actual fact, there are a number of different ways in which people can die alone.

I have carried out more than one research project with the issue of dying alone at its heart, and I’ve talked to older people who live on their own about their views. I have talked to people who’ve been bereaved about the experience of someone they cared about dying. I have talked to nurses in particular, and most specifically palliative care nurses who look after people who are dying about their experiences and views around this issue.

But I’ve also talked to people who work in roles such as funeral directors, funeral celebrants, local authority workers, people who deal with the situation where a person has died and they have no one to take charge of the post death details. There’s no one to register the death. There’s no one to organise a funeral.

And I’ve also carried out some documentary analysis of things such as, for example, coroner cases where someone’s died alone at home and their body hasn’t been found for an extended period of time, and also a news media review. And looking at all the data from these different groups I’ve come to realise that there are various different ways in which people can be said to die alone. Now, I’m not putting these forward as kind of fixed groups or fixed categories. There is very much a kind of overlap between categories, and there’s very much a porous boundary between the different groupings.

The first one I like to describe is what I call a lone death, and that’s where someone lives on their own, has lived on their own for quite a long time. They have virtually no social contacts, perhaps no family or the family have moved away, or they’ve lost contact with them. And when they die, their body is not found a very long time. Sometimes even a period of years. And cases like this, of course, are reported in the newspaper. And the ones that I call lone death have occurred when the body is found, not because someone has noticed they are missing, but because bailiffs have come to the house, most likely because of unpaid bills, possibly because of something like a water leak or some kind of structural issue with the accommodation.

These I call lone deaths. They are rare, but they do happen. I tend to think of people who have died in this way, as people who have already, before their biological death, taken themselves through a process almost of social death, where they have withdrawn from society, where they have no social agency any longer, so that when they cease going out and about, when they cease doing the things that they normally did, no one actually notices. And that’s how it comes about, that it can be a really long time before their body is found. I think it’s the immediate human reaction, isn’t it, to think that’s terrible, that’s awful. But I’m not so sure that it’s terrible or awful for the person in that situation.

There was one case in particular, and that this was a case which initially sparked off my interest in this kind of topic. And it was a case of a retired nurse who had died. She wasn’t found, I think, for about five years because, of course, it can be quite difficult to judge how long it is. And she was found because of a water leak in her flat, which went through into the flat below. And when I was thinking about it and reading the coverage, which was just as we’ve been describing, what came into my head was, well, perhaps when she felt unwell, as a nurse who’d worked in the big local hospital, she knew what it would mean if she was to summon help and she was perhaps taken to the emergency department. It was perhaps better for her as a private person to stay at home rather than die on a trolley in the local A&E. And it may not have mattered to her what happened to her body after death.

That’s very interesting because you could also, could you not, equate that to a hospice as well? Maybe that particular person may have felt, well, I don’t want a sort of long death, being cared for, not being able to do anything for myself. I’d rather have those things contained in a home setting. Is it the home setting that’s key to this?

If I refer to some of the interviews I have done with older people who live on their own. Obviously people have different views, but there was a group of 13 interviews that I did, and there was a kind of a subset within that of three or four people who felt that dying wasn’t the worst thing that could happen to them.

And for some people, this is the three or four people I referred to, they felt that it would be better to die alone at home, and they weren’t too worried how long it was before their body was found. That to them was preferable to becoming engaged in the healthcare system in being, as they viewed it, potentially forced to go into a care home. So for them, it wasn’t a big issue. Other people, of course, in the group were concerned about how long it would be before their body was found. Some took pre-emptive measures like having milk delivered in the view that the person delivering the milk could notice if it was left on the doorstep.

That’s interesting.  It makes me wonder, of course I’m no expert, but whether the sort of living wills type of preplanning approach comes in here, where one must completely respect somebody that wishes to to die that way, may not want to be accompanied, may be a private person, as you say, but it is quite gruesome if you discover that person and you’re not ready for it, or if there is an emergency situation with leakage from a flat above or something like that, or they’re literally right behind a door and people can’t get through the door, that sort of thing. Do you think maybe the solution to that, whilst respecting their wishes, is to have this sort of, I don’t know, plan whereby the authorities or statutory people would have a checking mechanism every now and again without intruding on their privacy? Or is that rather fanciful on my part?  

I can see the attraction of that. And for some people, I think perhaps the idea of some kind of advance directive might be a good thing. It might answer their needs. But I think one thing I would say with regard to that is that the study you initially referred to, the one funded by the Leverhulme Trust that has only recently finished, we put together in that a number of case studies of people who had died alone at home and not been found for an extended period of time. Now, a couple of those it had been years, and we’ve already spoken about the sort of lone death. But for most of the people, their bodies were found after a period of a couple of days, up to two or three months. One of the things that was interesting about this group of people is that they were none of them, especially old. The oldest person was, I think, 73. And it was interesting, too, that there was very little engagement. They had very little engagement with the health services. For example, one of the men had been seeing his GP because of high blood pressure, I think it was. But, he’d reported to his GP that he found taking the medication very difficult. He stopped ordering repeat prescriptions. So after he had died several years later, something like eight years later, his GP in his report to the coroner had said that they presumed that he had stopped taking the medication.

So while I can see the attraction of a system whereby there’s a possibility of checking in on people, and a possibility of people having a system in place which details what they might be willing to have in terms of care and support to what they might not be willing to have, I think I mean, I can’t put any numbers on this, but I think for a large number of people in this situation, they just don’t engage with services. They are kind of flying under the radar, if you will, GP services, social services are not particularly aware of them.

Yes, and I guess most of the study took place, I think, from August 2018 through to July 2020, but by July 2020 we’d had a period of lockdown by then, and our social circumstances had changed obviously, by virtue of distance, isolation and the need to stop the spread of Covid. What changes did you notice towards the tail end of that study were brought about because of Covid? Because, if people want to be on on their own anyway and they’re choosing that way, did Covid change anything or was it almost invisible as far as you can tell, just with that particular small period in mind?

Well, I think as far as the study we’re talking about here is concerned, I think Covid didn’t make any difference in that we were looking back on deaths that had occurred previously, so all the deaths that formed part of our case studies had occurred before the coronavirus pandemic began.

It’s interesting you mentioned this because as I said earlier, there are several groupings that I’ve identified when it comes to dying alone, and the group of people who are found after sort of days or weeks, I call them dying alone at home, where they live alone, they die alone at home, and they’re found a bit later. But they’re found because somebody notices that they’re missing. So it might be a neighbour who notices that they haven’t been putting the bins out or going to the shop, so somebody comes and finds them. Then there’s a grouping of people who choose to die alone and sort of take active steps for that to occur.

Then there are people who are alone at the moment that they die. And this is, I think, probably the largest group of people who die on their own, in the sense that if you talk to people who support dying people, nurses in particular, they will tell you so many stories about how the family are keeping vigil around the bed, supporting the person, talking to them, and then the family go away to get a cup of tea or to make a phone call and the person dies. And that is so common.

The last grouping that I’ve identified is what I’m calling  lonely dying. Now, that builds on the work of the sociologist Norbert Elias, and that of Allan Kellehear; a situation where somebody may be surrounded by people, but they’re not the right people, so that they’re dying surrounded by people – they’re not dying alone technically – but they feel as if they’re alone, they feel lonely.

And it’s very much struck me, particularly in the early days of the pandemic when people were dying in hospital surrounded by people, but people wearing what must, if you’re confused and distressed, potentially look like spaceman garments, all the PPE, and with no family members there, that probably lonely dying is the thing that would be most pertinent. And obviously, it’s the thing that is concerning for families. And of course, as time passed, hospitals, nurses, doctors put a lot of effort into trying to find ways to alleviate that situation, whether it’s through the use of technology when it’s working,or having a designated nurse to sit with the person. But I think  lonely dying  is a difficult category because there’s only one person who knows the dying person is feeling lonely. And of course we’re not in a position we can’t ask them questions about that.

You know, it’s fascinating to talk to you, particularly from that social management side, because – and I talk about this sometimes on the podcast – I remember when my brother died at twenty-four, this was in Gloucestershire; I was in London,   so there was a bit of to-ing and fro-ing because one of my children was being born at the time – both ends of life. And I remember when when finally it got to that moment in a palliative care situation, which, of course, as you know, is very hard to predict when the actual moment of of dying will occur. And I thought to myself, was I there in time? I seemed to be there in time but I’m not sure. I think he hung on for me. You know, we say those things, don’t we? You’ve got me thinking, especially with that distinction between being alone and being lonely, even potentially with people around you. I suppose even through my own experience, it’s got me thinking that the dying person, in a sense as well perhaps, feels the pressure of having to die in a certain way because of the people around them. Do you think that’s true?  

I think that is a possibility. It’s so hard to know, isn’t it? But talking to palliative care nurses about the situation we’ve spoken about – where the family are present, they leave the bedside and the person dies – some nurses will say that they believe that, within a limited extent, the person has some choice about when they die. And it can be almost a release of tension when the family leave the bedside, as if the family are holding them in life rather than allowing them to go. And of course, some people do explicitly say to someone they care about who is dying, you know, it’s okay for you to go now.

Yes, permission, sort of. Oh, that’s fascinating. And you do know what, Glenys, I could talk to you for hours and hours with the breadth of your study and experience. Absolutely fascinating. But I’m going to ask you one question, which I hope you don’t deem unfair, because it’s not directly related to this. But obviously, as the Art of Dying Well, we’re always talking about what actually dying well means. So as a sociologist, I just wanted to ask you, what do you consider to be dying well?

Well, that is such a huge question.

That’s why I said unfair, potentially, I grant you that, it is a very tough question.  

Yes. I mean, I think it’s one of those things that very much depends on the people involved. Well, as a sociologist, obviously, I see the group of people rather than just the individual. And when you think about how we make decisions, so often we might be making a decision about our-self and our own health, and potentially our own death. But we do tend to make decisions in a in a relational way in which we consider the people around us. So I think dying well or a good death, I think it very much depends on the people involved. And I think it depends on so many different aspects of their lives.

We can sometimes, I think, forget that death is much more than a medical event. We can become focussed very much on ensuring that somebody has the medical and nursing care they need. And obviously that is so important. And the medical profession these days has so much to offer dying people, and pain relief – physical pain relief is so important. But there are also other things going on, because when an individual dies, unless they have kind of withdrawn themselves from society, that death is going to affect so many people. And I think dying well needs to take account of that fact. And it needs to happen in a way that is good for all the people who are most closely involved. And I think one of the problems that we have is that because we don’t talk about it very much, we don’t always necessarily know what those around us would want, what what they would prefer.

And of course, it’s the case, isn’t it, that when we’re thinking about potentially our own deaths, we want to spare the people we care about suffering so we might make decisions not based on what we ourselves would want, but on what we think might be best for the people around us.

I think if we were able to have open, honest conversations with each other about what would be best, for example, dying at home, it’s thought – and surveys tend to support this view- that people prefer to die at home. But then as people come closer to the end of their lives, you know, perhaps as they become older, perhaps they become frail, and perhaps they have some kind of terminal   illness diagnosis, their view might change because they might be worried about their partner living in that house after they’ve died there; they might be worried about the effect on on their partner or their children of having to look after them. They’re seeing their potential death in that space and the effect it might have on the people around them. And I think it’s different for for different people.

Yes, very true, very true. And thank you for taking that on, I appreciate that, that was my  and  finally question. Well look, Dr Glenys Carswell, thank you so much for helping us understand lone deaths a little bit better and to move outside our preconceptions and our projections, and to understand about being alone versus being lonely. I think it’s been absolutely fascinating. And thank you for bearing with me in this in this technologically fraught era where we have to do all manner of things to talk to one another. So for our listeners, if you hear a bit of an echo there, that’s because we’ve been to-ing and fro-ing haven’t we Glenys, to get we get this to you. But thank you ever so much. Do stay in touch with us. I’m sure we’ll be back in touch with you to tap on your expertise again, if you don’t mind. That would be great.  

Well, thank you very much for the opportunity to speak about my work.