My first encounter with palliative care was as a teenager working in a local care home. It was a lovely place where staff put on activities such as cake decorating and hockey games (played exclusively with walking sticks). End-of-life patients were also supported; people made an effort to sit and speak with them, and I read one woman’s letters aloud to her.
Yet despite all of this, I never managed to shake the sense that residents who were actively dying felt separated from the rest of the home, and indeed society at large—shut off into private rooms and forgotten by former friends. This instinct to separate the dying from the rest of the population seems to be mirrored in hospitals. A group of medics I spoke with said that, if possible, their first move when a patient was imminently dying was to put them into a private side room. Naturally, the patient’s own privacy was highlighted as a reason for this, but they emphasised that this course of action was also important for other people around them.
Death may be universally upsetting. But this instinct to privatise and remove it from public life is not universally practised in other cultures. There is something taboo about death in the British consciousness, that views it as unfit for public consumption.
The anthropologist Julia Lawton’s work in an NHS hospice highlights the isolating nature of death. Lawton gives a painful and vivid account of the death of a woman called Annie. Annie had initially hoped to die at home, but a desire for privacy led her to seek hospice care; having a recto-vaginal fistula, she wanted to spare her family from witnessing her body degrade. Once in the hospice, as she struggled with incontinence, bodily fluids and the accompanying smells, she was gradually more and more isolated, moving from wards full of patients to her own private side room. Visits became infrequent, and she died alone. It wasn’t a need for specialised care that drove the nature of this solitary death—it was shame.
Annie’s story demonstrated the particular challenges that accompany losing control of a body in Britain. Lawton argues these fears surrounding “dirty” dying stem from our country’s Protestant, individualistic tradition, which sees having a controlled and private body as an essential component of being a person. This sense of dehumanisation as the body degrades was evident in how patients talked about themselves, using animal metaphors to describe their situation: they “smelled like dog shit”, and argued in their final days, “you wouldn’t put a dog through this.”
I also found this when I spoke to medical students for my social anthropology degree. They emphasised the importance of preserving the individual person in death; “preserving them”—as if their identity was somehow threatened by the process of dying. This may be why so many people feel reluctant to give control to others at the end of their lives, and why most of us will know of an elderly person who waited far too long to accept additional support in the face of illness. In one way or another, bodily control is seen as a key aspect of being a person, despite being largely impossible to maintain in the messy business of dying.
This is not, of course, entirely a Protestant, British problem—but Catholic cultures, such as the Italians and the Spanish, put significantly more effort into looking after their ill and elderly within their own communities. It’s important to remember that our view of the self, and aversion to bodily fluids, is far from universal. Perhaps the most famous deviation from this is in Melanesia, in the Pacific, where the anthropologist Marilyn Strathern discovered being a “person” is quantified by relationships with others, not just a concept of the self. When personhood is less contained, bodily fluids no longer carry the same taboo. This isn’t primal instinct—it’s cultural context.
This is why we separate the dying from the living in this country. If the dying sit between person and non-person, then there is no place for them in ordinary society. Even outside of side rooms and care homes, home deaths tend to involve only a small circle of immediate family and hospice professionals. We’re also far less likely to care for our own relatives in this country, particularly in comparison to Asian cultures—indeed, a former head of a nursing home I spoke to suggested cultural backgrounds were a defining factor in how often people visited their relations. British culture may yearn to shut death into a neat sterile box, but all we tend to achieve is to remove it from public view.
Because this is rarely possible, we are often poorly equipped to deal with the messy and difficult realities of dying. We cling to our individualistic values by encouraging people to make an array of choices about the manner in which they would like to die. A key feature of terminal care in this country is what the NHS terms Advance Care Planning, or ACP: a series of conversations and paperwork all designed to encourage patients to put forward preferences on the manner of their death, from where they want to be, to what kind of care they wish to receive. This all has the ultimate, end goal of creating what the NHS terms a “personalised” approach to end-of-life care.
Yet, despite the huge amount of importance placed on choice, the actual process of “choosing” isn’t the triumph of individual agency that you might expect. In her study of end-of-life care, Erica Borgstrom highlights that everything from the wording of these questions to the layout of these forms dictates to patients and their families how to engage with the process of dying. And although NHS guidance is very clear that these conversations should never be forced upon patients, Borgstrom highlights that in practice, doctors and nurses regularly, albeit gently, refer patients back to these questions and paperwork where they haven’t engaged with them, and guide them through the process of filling them in.
Sometimes then, when patients make decisions about death, it is because the end-of-life bureaucratic process presents this as something they are supposed to do. And this doesn’t even begin to touch on those who won’t engage with these questions (of which there are many) for the simple reason that they do not want to accept that they are dying. This is absolutely not to say medical practitioners are wrong to present these choices, but it does highlight that institutions shape individual choices far more than we realise.
You’d think that when people do get around to filling in these forms, they consider themselves and how they feel most comfortable dying. Yet Borgstrom’s work highlights this is rarely the case. When pressed on making decisions about death, she says the majority of terminally ill patients are concerned with what is most convenient for their families, not themselves, even in cases of quite serious estrangement. When we encourage people to choose, people rarely choose themselves. So even though our relationship with our bodies and minds is very different on the surface to other more relational cultures, when it comes down to our final moments, western individualism does not triumph. Outside of many of our other cultural values, there is perhaps a primal instinct to think relationally.
The notion of choosing a death to convenience others will instinctively make many people uncomfortable, particularly in the context of assisted dying. However, relational thinking around death shows up rather unexpectedly in real-world accounts of euthanasia. Francis Norwood’s work on assisted dying in the Netherlands emphasises that only nine in 10 people who begin the process of euthanasia actually proceed with it. This is partly because doctors actively attempt to slow the pace of proceedings down. However, she demonstrates that the lack of follow-through in Dutch euthanasia is largely a result of the community that conversations around dying builds.
The assisted dying process involves medical professionals gathering friends and family together and providing them with a framework through which they can talk about death. Somewhat ironically then, giving people the ultimate individual choice of when and how they should die enables them to re-establish deep connections with others that make them want to live. It is a sad result of western cultural values that the ill and the elderly are so isolated in the first place—however, this does demonstrate that assisted suicide, beyond giving people choice, provides them with a way to share death with those closest to them.
Dying in Britain can be a desperately lonely business. Yet even in a culture obsessed with personal choice and individual autonomy, our connection to others seems to hold the most meaning at the end of our lives. The debate around assisted dying may be divisive, but in many ways, it is a minor miracle that a country with such a deep-rooted inability to confront death has managed to move conversations about dying out of hospital side rooms to the arena of public debate. The concept of assisted dying might actually be what finally pushes our society to do the uncomfortable but necessary work of facing death.
