Is death a taboo subject?

You’re the one reading a blog about death and dying

  • Do you feel you’ve accessed something prohibited?
  • Are you fighting to break free from social custom?
  • Are you reading this in incognito mode scared that someone might look over your shoulder?

I think death and dying can be an incredibly difficult subject to discuss. The myriad of issues that surround the topic can be scary and divisive.

Death is difficult to nail down in part because there are no experts. We all get one shot. We are all rookies.

Whether we approach it as a religious or spiritual event, an atheistic end or an agnostic question mark, nothing can be more personal than how our lives end.

In many countries death has been complicated by increased life-expectancy and the growing availability of medication and technology that can extend life, but the certainty of death still underpins all of our lives.

But is it a taboo?

I don’t think so. I talk about death every day. In my role as a campaigner for legalised assisted dying, with Dignity in Dying, and in helping people plan for the death that’s right for them, with the charity Compassion in Dying.

Of course my view might be unduly influenced by how I spend my time but I find myself encountering a surprising number of people who also work with death and dying on a daily basis who perpetuate the “taboo” myth.

It’s not unusual for end-of-life specialists to lament society for not dealing with death “properly”, blaming the advent of secularism and unrealistic media portrayals. The necessity of overcoming the so-called taboo has apparently never been more urgent yet it feels we are always on the crest of a wave that doesn’t quite break.

A conspiratorial analysis could invoke Foucauldian discourse, where those in power — doctors — have recognised the need for better end-of-life dialogue but have (perhaps unconsciously) branded death as taboo in order to retain control of the parameters of the discussion. Validation for this comes through the fact that there are still some death related topics that remain off-limits.

Take for instance the determination of those who campaign from within the palliative care sector to limit debate on assisted dying. This is a fundamental end-of-life issue that the majority of people support, yet some doctors repeatedly disregard the public’s calls for law change. So much for open discussion.

A more optimistic view might be to see the labelling of death as taboo as a well-intentioned, but slightly misplaced effort to improve the way society, and individuals, cope with an impending demise. But it’s not clear to me how reproving the public for their current behaviour will lead to something better.

This is especially true when we know there is much room for improvement within the healthcare system itself. Compassion in Dying receives many calls from people who have tried to instigate a conversation about their preferences for their end of life and have come up against resistance from clinicians.

We are dealing with a two-sided coin. So if we want an open culture around death and dying we need to be looking beyond the rudimentary conclusion that “people just don’t want to talk about it”.

Listening matters

To test out some ideas, at the end of last year we asked people at a nearby (non death-related) office some questions about the work we do.

I was pleasantly surprised to see that the majority of people we surveyed think about death as much as I do.

I don’t believe anything is a more powerful driver to making life meaningful than reflecting on the fragility of it.

But these results suggest a huge disconnect between people’s own experiences and their perception of society as a whole — those who thought about death the most often were the people most likely to regard it as a societal taboo.

Our unscientific findings are remarkably similar to more robust polling. A 2016 Dying Matters poll found that 64% of people feel comfortable discussing dying with family and friends, yet 73% feel “people in Britain” are uncomfortable discussing it. We also know that 82% of people have strong feelings about how they want to be cared for at the end of life. But in spite of this just 4% of us have planned for our treatment and care in a legally binding way.

We need to better understand what lies beneath these incongruous results.

While I’m sure there are many contributory factors, I fear that referring to death as a taboo issue is fanning the flames and risks creating a self-fulfilling prophecy.

When the end-of-life sector talks about the need to “break the taboo”, that’s a potentially quite intimidating gauntlet to throw down. Is it really surprising that people might be reluctant to share their thoughts with others if they are under the impression nobody will want to listen?

A more productive approach might be to simply emphasise how conversations around death and dying are perfectly routine and valuable, reflecting what the majority of people actually believe.

Thinking about our survey, there was one comment that stood out to me…

This is really interesting. Thank you for asking us what we think!

Perhaps that’s the key thing to take away. People are capable of thinking about death, but are they being given sufficient opportunities to articulate those thoughts?

Not talking is not the same as not wanting to talk. Creating these opportunities might be uncomfortable, it might take time, it might lead to a challenging discussion, but it isn’t that the point?

Does this make death a taboo?

No, it makes it ripe for conversation.

Want to help us change the culture of death and dying? We’re always looking for interesting articles or blogs to publish, let us know if you want to write something: @lloydmriley