Talking about dying

This month the Royal College of Physicians has published a report bearing the title ‘Talking about dying: How to begin honest conversations about what lies ahead’ 

There is a concern that doctors and other healthcare professionals find it hard to talk to patients about dying. This reflects something that I have heard Iain McGilchrist  author of The Master and His Emissary: The Divided Brain and the Making of the Western World, say, i.e. that death is no longer freely talked about. It has become a difficult topic. We would now rather talk about sex than death, whereas in Victorian times it was the other way round. If this is true, then it is not just doctors and healthcare professionals, but the population at large who finds it difficult to talk about death, and especially to talk about death to people who are dying.

Earlier this year my mother died so I now have a heightened awareness of death and how we might approach it. The problem is that if you have never experienced the death of someone you love (or indeed anyone) before,  unless you make an effort to become informed before the event, which seems to be generally regarded as morbid, then you can only learn through hindsight. Reflection on my mother’s death this year has made me think I should have thought more about death before she died. I now realise that there are many ways in which I could have done this.

I recently read Paul Kalanithi’s autobiographical book, published posthumously, When Breath Becomes Air,  in which he records his experience of dying and how he prepares for his own death. The book highlights the importance of open communication about this experience not only with healthcare professionals, but also with family and friends.

Also this year, my research colleague and friend Mariana Funes, encouraged me to watch a number of videos on YouTube in which the presenters discuss the importance of preparing for death and talking about dying. In these videos the presenters consider changing approaches to the care of the dying (https://youtu.be/mviU9OeufA0 ), the need to make clear our preferences for end of life care (https://youtu.be/lkvKGafoyIY ) and why we should all talk about dying (https://youtu.be/nQ90MFMYnZg ). These are just three of the videos I have watched. There are many more.

And last week I watched on DVD the film ‘Awakenings’, based on Oliver Sacks’s book of the same name. Its tells the story of victims of an encephalitis epidemic many years ago who have been catatonic ever since and how treatment with a new drug, L-Dopa, brings them temporarily out of this catatonic state, hence the title ‘Awakenings’. What really struck me about this film was that the doctor realised before treating his patients with L-Dopa, that behind the catatonia is a person who can be reached and communicated with. This is what I wish I had more fully appreciated when my mother was dying.

My mother had dementia for eight years before she died. In the latter years it was not possible to communicate with her through conversation. We used to communicate through singing. Right till the last year of her life she could recognise her old music hall favourites, even though I was not sure that she knew me or understood anything I said to her.

Having watched ‘Awakenings’ I think I should have had more faith that she could ‘hear me’. I remember on the day before she died the District Nurse told me to go and sit with my mother and talk to her. I felt awkward about this. I hadn’t had a conversation with my mother, or really talked to her, for years. But I did what the nurse told me to and the last thing I said to my mother was that she was not to worry, she would not be moved from her home into a hospital (her wish was always to die in her own home) and she would not be left alone. At the time I wondered whether she had heard or understood me, but now, with hindsight, I think that she did, and that she knew I was her daughter and was reassured that she would die at home. My regret is that I didn’t talk to her more during her last weeks.

I hope the Royal College of Physicians’ report is widely disseminated and discussed. We should not wait until after the death of someone we love to learn how to talk about dying. As I wrote in a previous post, death should be a friend of life.

Death is a friend of life

The Self-Unseeing (by Thomas Hardy)

Here is the ancient floor,

Footworn and hollowed and thin,

Here was the former door

Where the dead feet walked in.

 

She sat here in her chair,

Smiling into the fire,

He who played stood there,

Bowing it higher and higher.

 

Childlike, I danced in a dream;

Blessings emblazoned that day;

Everything glowed with a gleam;

Yet we were looking away!

 

At some point in life, I expect most people will wonder what life’s all about, what it means, what’s the point? For philosophers, answering these questions can be life’s pursuit. For others, these questions may only become significant at certain points in life, such as with the death of a loved one.

I have just returned from a 4-day course with Iain McGilchrist, author of the ‘Master and his Emissary – the Divided Brain and the Making of the Western World’. For reasons which I will explain later in this post, I was keen to hear Iain’s thoughts about life, death and dying. So, at the very start of the first day, when he read Hardy’s poem, ‘The Self-Unseeing’, and said that Hardy was unique and had he not existed there would be a Hardy-shaped hole in the Universe, I knew it had been worth battling the snow and dreadful motorway conditions in the worst freeze that the UK has had for years, to get there.

In a recent discussion that Iain had with Jordan Peterson, Peterson said that death is a friend of life (in Iain’s words, a friend of being) and a necessary stage in life.

We all know we are dying from the moment we are born and of course many cells in our body die and are replaced during life, so a different Jenny Mackness stands before you today than did yesterday, last week or a few years ago.

But Iain McGilchrist’s view is that life is literally on its way out in relation to the way in which we live our lives and behave as social animals in today’s society. Birth, sex, the body and death are all suffering. There is a declining birth rate and sex is also on the decline. For example, 20-40% of young men express no interest in having a sexual partner. Sex has been objectified through the internet and robbed of its power through explicitness. There has been a death of ‘flirting’ and hysteria about ‘touching’ to the extent that teachers are afraid to touch the children they teach and nurses are similarly cautious about touching patients. There has also been some research to show a declining mother-infant relationship. (Schore, A.N. 1994)

Likewise death is no longer talked about. In Victorian times, death was talked about, but sex was not. Now it is the other way round. Doctors used to be present at death, as depicted in this painting.

The Doctor, Sir Luke Fildes,  http://www.tate.org.uk/art/artworks/fildes-the-doctor-n01522

Now death is often surrounded by machines. Unlike elephants and other animals who know how to mourn death (https://news.nationalgeographic.com/2016/08/elephants-mourning-video-animal-grief/), Iain McGilchrist believes that we no longer honour the reality of coming face-to-face with death, as we did in the past. Elephants seem to know and understand the reality of death.

The reason I was interested in this, is that my mother died just over a month ago. I have attended this Field & Field course twice before (each time writing up and sharing my notes), but this time I went with the specific purpose of creating a space in my life, to come to terms with the confusion I have felt about my mother’s death.

Although my mother required 24-hour care at the time of her death, she was not surrounded by machines and we were able to ensure that her wish to die at home in her own bed was respected and realised. Neither did she die alone, but was surrounded by those who understood that ‘death is a friend of life’.

I did not think of Hardy’s poem at the time of my mother’s death but a friend of my mother’s sent me Tennyson’s poem, Crossing the Bar, which we read at my mother’s Thanksgiving service

… and a friend of mine, sent me this beautiful music by Brahms, which we played at her service.

Iain McGilchrist’s stress on the importance of poetry, music and presence at a time of the death of someone you love, or indeed of anyone, resonated with me. I am fortunate to know at least two people who really understand this. As many testified at her death, my mother was unique. Had she not existed there would be a Betty-shaped hole in the Universe.

Reference: Schore, A.N. (1994). Affect regulation and the origin of the self: the neurobiology of emotional development. Lawrence Erlbaum, Hillsdale NJ.