On Death and Dying was one of the hardest books I have ever read. The subject matter was, obviously, in part the reason for this. But there was more than just the topic that made this a difficult book. Elisabeth Kübler-Ross wrote this book at the end of the sixties, almost some fifty years ago and there is much about the world that has changed, and some of what she describes can become difficult to apply to the world we know now. Some level of personal experiences and beliefs that seemed to go against some aspects of the book and the people within its pages also made some aspects of the reading difficult.
Hospitals (at least in the places that are part of the ‘first world’) do not entirely resemble what Kübler-Ross speaks of. They may not be perfect, may be over populated and overly busy, but some of the aspects of them has changed greatly, namely the way the family members of the patients are handled, and also the way that patients themselves are treated and what is available to them to help them not be so alone. Of course, a lot of this changed thanks to the work of people like Kübler-Ross and although the change made it hard to look at her work as being entirely usable in today’s hospitals, it was in itself an enlightening way to see what exactly had changed throughout the years.
That aside, the fifty years since this book was written, show in a myriad of way throughout the pages. Someone I talked to this about joked that ‘People don’t die the same anymore’, but I do think there is a difference in how a lot of the aspects of dying are approached in today’s society, and not all of them are changes that occurred because of research done on this topic. Some, simply happened because the world, our society, changed and evolved. One of the most often evoked worry of the dying in the book is that their spouse is having to take on responsibilities that were not theirs before: for men they worry about their wives looking after the financial and business side of things; for women they worry of leaving their husbands to have to do everything around the household and look after the children.
Gender roles were still strongly enforced and respected when Kübler-Ross wrote this book. Nowadays they are slowly—but surely—being forgotten. Women work, men raise children and for the most part no one bats an eyelid at it all. As such it could be quite difficult, and extremely jarring to fully understand the worry of these patients who felt like they were putting on their husbands too much or not feeling confident that their wives could handle the business they were leaving behind. I think that, as someone who sees themselves as a feminist and stands against gendered stereotypes, these parts were particularly hard to get through. It made me angry because, surely, surely it shouldn’t have been that way. I had to remind me when this book was written several times to get through these particularly bits. Similarly, the heavy emphasis on religion, Christianity I should say, was troubling to me. It was this tacit understanding that bar a few exceptions (there is mention of a Jew at one point), this was the religion that everyone shared, that was accepted as the norm and, in a way expected. Again, this is something that from my personal experience has changed and I cannot imagine that researchers would so easily involve members of the clergy in their research as Kübler-Ross did back then. Finally, the last outdated, rage-inducing part of this book was the use of the word ‘negro’ that felt so out of place and so wrong in the context that it made me extremely uncomfortable and judging how hard as a world we have to fight against racism if it might be a plan to edit such words out of texts that are supposed to be open-minded.
Now all these things aside, On Death and Dying made for a truly interesting read, not least of all because it reveals the origins of what we take now for granted as the five stages of grief: denial, anger, bargaining, depression, and acceptance. Nowadays these are applied to any grief, but when Elisabeth Kübler-Ross developed and first talked about them, she was not talking about the grief of the living, of those that stay behind, she was talking of the grief of those that are dying and know that they are going to lose everyone and everything that they grew close and worked towards in their lifetime. In this the book holds several revelations. First of all, when studying grief, I had always struggled with the stage of bargaining, and more importantly with when it came in the process. When looking at the grief I had experienced, bargaining suddenly didn’t come after anger, or at least not in the way textbooks had presented it to me. And also it seemed to apply only to cases where the grieving person had known that the deceased had been dying and could not be applied so easily to sudden and violent deaths. Seeing it as a part of the stages that the dying goes through made tremendously more sense.
But more than anything, On Death and Dying made me look at dying in a way that would have been impossible without experiencing it myself or working on the wards where these people spent their last hours, days, months or years. I did not find it as scary as I thought, or as difficult. Instead it made me understand some things attached to my own grief attached to the friend I had to watch die recently. I understood more about what she went through (and how she struggled) and I truly wish that I had read this book earlier. I think, simply, Kübler-Ross asks us to be more human, to look at people and see them as a person no matter their state or their pain. And it should sound an easy enough thing to do but we are famously bad as a race to see things from a point of view that is not our own and in that, her work is tremendously important.
I don’t know if I could handle working with the dying as she did, for I found their stories in turn heart breaking and frustrating, but I have learnt a great deal for learning this book. Not least of all that hope is something we should be able to carry with us until the very end. I had never considered that the dying too grieve, for it is something so little talked about. But now all I can think is, of course they do. It seems now like such obvious a thing that I can but be grateful as this book for how it opened my eyes. I cannot imagine anyone who works with terminally ill patients who should not read this book. They made find it difficult in places, as I did, for our world has changed, but the lesson that it carries, the wisdom within its pages has no need to change, because no amount of time passed will ever make it entirely irrelevant.