The taboo of death, dying and doulas

I had written this article by early afternoon on 8 September and thought, ‘Great, that’s it, it is done’. Then the first notification came, and I switched on the news - the Queen had died.

Ah the irony. I had just written a piece all about the need to talk openly about death and dying and the news coverage was full of death and dying. Talk of a country in mourning, expressions of grief and sorrow, signs, speeches and symbols of death.

It made me wonder was I wrong in what I had written? Perhaps yes on some level but, equally, I think at times we find it easier to speak of death and dying when the person is somewhat removed from our day-to-day lives. When the subject is closer to home we can struggle more, understandably of course as it is more personal. And, unlike other cultures or previous times, death and dying has become medicalised, taken out of local communities, shielded in secrecy.

It’s often been viewed that there are three no-go areas of discussion at a dinner party - sex, politics and death. In recent times the landscape has shifted – funny social media satire on politicians makes for likely conversation fodder and Jane Austen-style dramas are full of corset-ripping romps that get chewed over by guests.

However, the taboo around death prevails in society. We still struggle to talk about it openly. Even when a pandemic brought death closer to home than ever, with new total numbers of deaths daily and the media sharing heart breaking stories of families unable to be together for final moments.

There are people out there, much like myself, banging gently on a drum to encourage conversation, considered care at the end of life and bereavement support. These include many wonderful hospices, bereavement counselling organisations and individuals and charities such as Macmillan and Marie Curie who have many different strands to support end-of-life patients.

There are also books being written that share experiences - Dr Kathryn Mannix is palliative doctor and writes sensitively yet frankly about what the moments of the dying process may look like. Psychotherapist Julia Samuels Grief Works is a needed companion to bereavement, in that reading the case studies allows you to realise that something that feels so isolating is full of shared experiences. The Do Lectures produced DO/DEATH/For a life better lived, which covers much of the process before the death, in the immediate aftermath and beyond. I am heartened by celebrities and recognisable faces speaking out about death and bereavement. Richard E Grant’s honest updates of his grief on Twitter are humbling, Cariad Lloyd inviting people to share stories of loved ones who have died on her podcast Griefcast and Deborah James who generously shared with followers her journey including her final months and weeks.

And then there are the death doulas, a small cohort who will go into homes to support the ill person and their families or loved ones. “An end of life what?!” have often been the words that greet me when I talk about the work of an end-of-life or death doula.

The support varies, mainly dependant on the doula and their skillset. It may include practical support such as cooking or cleaning. This allows the family more time to be together or for loved ones to focus on something more meaningful. It could be they help with funeral planning and legal matters, so that at a time when everything feels so overwhelming there’s someone to help guide through the paperwork and plans.

An end-of-life doula may also be able to offer emotional support, offering a space in which the ill person can speak about their feelings, concerns, or anything difficult they don’t feel able to share with those closer to them. The role may involve enabling and supporting conversations around death, care wishes or to air anything the situation brings up for families.

When I think about the power of what these conversations offer I think of A Monster Calls, by Patrick Ness, when the tree explains to Connor: “If you speak the truth”, the monster whispered in his ear, “you will be able to face whatever comes”.

I have heard it said that if you speak of death and dying you are inviting it in; manifesting it in some dark and magical way. I’ve spoken about winning the lottery or being in the audience of an intimate Sheffield gig by the Arctic Monkeys and these things are yet to happen and probably never will.

However, one day I will die. And I’d like to know that at my funeral people dance to Stevie Wonder and wear bright colours.

What I think is the most important in it all is that people have space to tell people how they feel, process anything they feel they may need or want to explore before it is too late. Regrets can make grief more difficult, any opportunity to lessen that feels important to those who are left behind.

Doulas are slightly better known in supporting births, this frankly is not surprising as we are far more comfortable talking about the beginning of life than the ending of it. Both things, our birth and death, we only get to do once (or once in our current form, depending on your religious groundings).

However, it is possible to have far more say and input into how we die and how we may be celebrated after death. There are of course limitations of control, but if we were willing to be more open to talking about death and dying there could be much more potential for a more thoughtful and fulfilling death.

This leads me back to where this started, the Queen’s death with all the symbolic gestures - flag at half mast, BBC news reporters dressed in black, carousels of footage of her life - allows for a clear sense of grief and mourning. We are all aware that there is a somewhat collective sense of death and its impact.

Death is quite literally paraded in front of us, it is not hidden, minimised or shielded away from consciousness.

Perhaps if this can continue to seep into our conscious and allow us to speak more openly with each other, and if the context allows, we can all have a death fit for a queen.