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.