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.

13 thoughts on “Talking about dying

  1. John Mackness October 19, 2018 / 3:40 pm

    I’m sure you are right Jenny. Death is a natural process – both words are important. It’s natural that we are born, grow, mature and die. And possibly more important death, which of course can be very upsetting, is an inevitable process and its inevitability means that its impact can be rehearsed. Part of this rehearsal is to talk about it.

  2. Gordon Lockhart October 19, 2018 / 4:26 pm

    My wife suffered a cardiac arrest this summer while we were on holiday in Scotland and died a few days later with profound brain damage. My sons and I were extremely impressed by the nursing staff in palliative care at Dumfries Hospital who encouraged us to talk to my wife as they did, even though there was no obvious response. The doctors went to great lengths explaining the details of care and offering us choice where possible. When the time came and my wife stopped breathing I was even hugged by a nurse – all on the NHS!

  3. jennymackness October 19, 2018 / 4:44 pm

    I am so very sorry to hear of your wife’s death Gordon. You must still be reeling from her loss. I found it a very confusing time when my mother died. I simply had not thought about death enough beforehand to prepare me for the event, even though she was 92 when she died.

    My mother lived on the Solway Coast in southern Scotland, near Dalbeattie and Dumfries and her initial diagnosis for dementia was at Dumfries Hospital. I fully agree about the wonderful care that Scotland provides for the elderly. My mother received daily visits from carers for eight years, all paid for by social services. In her final years she was visited four times a day and in the final week of her life Macmillan nurses provided 24-hour care, again all paid for. Her care was superb and a wonderful support to me and my family since we live a two hour drive away.

    Like you, I was also consulted by my mother’s doctor in her final weeks, who gently advised me of the choices to be made and the best course of action to take, which was principally to let my mother die in peace – her time had come. I was so impressed by how he did this.

    I still think about my mother every day, but I do not grieve for her. I am grateful for her life and for the wonderful care she received.

    Thank you for sharing your experience, which is even more resonant given the Dumfries connection.

  4. scottx5 October 19, 2018 / 5:37 pm

    Thanks Jenny. Not sure I’m a fan of death as a natural process or of it being a disaster. Regardless, death, as you say, is unavoidable and the silence around it leaves dying people cut off and gone before they are gone.
    There’s also the problem of medical people being the keepers of the knowledge of death. I was told by a doctor who knows nothing of my case that I had no right to claim an experience of death because, obviously, I wasn’t dead. (Ironically, medical records back me up but that was a doctor’s opinion and OTHER doctors can be wrong).
    Thinking about this, my memory focuses on a very few who mattered at what felt at the time was the end and they were all family and one nurse who was on relief to cardiology from the children’s cancer ward. So maybe the important thing before leaving for good is to be able to say good bye to those who know you?

  5. jennymackness October 19, 2018 / 6:49 pm

    Thank you Scott for your comment. I’m not sure what death is, if it isn’t a natural process. I can see that it might be untimely and a painful process, but ultimately the end of life comes to us all in one way or another? I suppose if it isn’t a ‘natural’ process, then it is an inevitable process.

    Maybe your doctor was someone who could benefit from reading The Royal College of Physicians report 🙂

  6. Gordon Lockhart October 19, 2018 / 8:12 pm

    Thanks Jenny and for your interesting account of superlative care in Scotland. Both my mother and her twin sister lived to be 100 in Edinburgh care homes – think I’ll move up there! Scott mentions the importance the importance of goodbyes. It saddens me that circumstances never allowed this in all my experiences of the death of loved ones.

  7. scottx5 October 19, 2018 / 9:08 pm

    Jenny, agree that death is definitely a natural process that people find difficult to talk about and that unwillingness to deal with the subject leaves those dying, in a sense, abandoned to deal with alone when they most need compassionate support. In my case, the doctors have run out of things they can do to “fix” my heart and I’ve finally had to tell them to relax and let me go on living with the damage and not feel like they’ve failed me. Mistakes were made and this in part makes them hesitant to mention death–the other part might be their unwillingness to seem like they’ve given up on me? Who knows?

    From a different view, I have a friend with cancer who’s undergoing chemo and radiation and for all the theorizing I find it almost impossible to talk about death with her. Will read the report.

    Nice version of Cyndi Lauper’s Time after Time:

  8. jennymackness October 20, 2018 / 5:23 pm

    Scott, I cannot imagine how it must be to be in your position. I am fortunate to be in very good health. But I know that despite this, I am getting older (eighth decade now!) and so whilst I have been dying since the day I was born, death feels nearer these days. I am making plans for this now and talking to my children about it. I have found that my mother’s death has helped me to understand better how I might need to approach the end of life. All the best to you. Jenny

  9. scottx5 October 20, 2018 / 7:33 pm

    Jenny, thanks for your comments. I do have to remember my life has been returned to me twice–by chance and by luck. It makes me too angry to discuss the system so I’ll leave it beyond noting that medical care here is a perfect example of organized ignorance of itself. Feedback goes in and disappears and anything that might seem like criticism, or even valid observation, is fed into dialog utility that’s clearly designed to lead you to understand how wrong you are. Black box I think it’s called.

    Have read about half of the report and love the evidence of a system that seeks out learning. Most medical people are in themselves intelligent and curious and it might be the profession that drives them to indifference? Found this report on the net, my next read:

    A Design Thinking, Systems Approach to Well-Being
    INTRODUCTION TO THE WORKSHOP

    “The mental health and well-being of health professionals is a topic that is “broad,
    exceptionally relevant, and urgent to address,” said Zohray Talib, member of the workshop
    planning committee who helped lead the charge. Stress in the health professions is “so
    ubiquitous, it is almost inevitable.” It is both a local and a global issue, and affects professionals in all stages of their careers, said Talib. To explore this topic, the Global Forum on Innovation in Health Professional Education (the Forum) held a 1.5 day workshop, titled A Systems-Approach to Alleviating Work-Induced Stress and Improving Health, Well-Being, and Resilience of Health Professionals Within and Beyond Education.”

    https://www.nap.edu/catalog/25151/a-design-thinking-systems-approach-to-well-being-within-education-and-practice

  10. aarondavis1 October 21, 2018 / 12:34 pm

    Thank you for sharing Jenny.

    I think that I was probably in denial as I watched my mother die of cancer. The biggest shock was the body transformation. I cannot think of any film (I have not seen Awakenings) that authentically reflects this. Maybe I was naive? Not sure what I did expect. Was a challenge none the less.

    Something that you might be interested in (if you have not already come upon it in the past) is this podcast capturing Sacks’ last days:

    If possible, click to play, otherwise your browser may be unable to play this audio file.

    One of the most moving things I have listened to.

    Originally published in Read Write Collect

  11. jennymackness October 25, 2018 / 10:18 am

    Thank you Aaron for sharing the Oliver Sacks podcast with me. We are lucky to have this technology through which to capture these recordings/thoughts that are important to us. I recorded (video and audio) my mother a number of times during the last years of her life. Even in the last stages of dementia she could still sing extremely well, even though she couldn’t hold a conversation. I also (before the dementia really set in) interviewed her about her life and found out all sorts of things that I didn’t know. I realise that probably my own children don’t know much about my early life and aspirations.

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