By My Bedside - a printable resource

If you’ve ever sat by the bedside of someone who wasn’t up to responding, you will know the frustration of the “not knowing”. Who has visited? Is this the third time they have heard this music today? Do they need other support that just hasn’t been offered?
This resource is designed to be available at the bedside for all the support that a medical chart can’t give.
It’s a booklet where visitors can make a note of who has visited, what they talked about, and what else is going on in the world.
I’ve used a blank notebook for this several times, but this booklet gives you prompts - especially handy when everything is stressful.
It’s free for you to print out and use, as many times as you wish.

Creatives Up Close is a series of occasional online conversations with creative human beings from Central Victoria and further afield.

Tune in to a variety of discussions about death and dying, making things and any other topics that take our fancy.
Hosting duties shared between Central Victorians Deb Wain, Amanda Collins and Susie Marcroft.

Planning around your death.

These are the books on death and dying that I would recommend you have a look at. Some are "not for everyone". Some are more challenging than others. But all are useful in some way. I hope they give you what you need.

Dying to Ask… What’s Elisabeth Kübler-Ross’s book all about?

 I have decided to start my series of reviews of books on death and dying with the original – Elisabeth Kübler-Ross (EKR)’s On Death and Dying. It’s a classic in the field, and is still referred to today, often by people who haven’t read it or revisited it in years. I wanted to see how well it stands up in the light of everything we know and understand today about death and dying.

On Death and Dying is fundamentally an account of a four-year-long series of weekly conversations with American hospital patients who had been diagnosed with terminal illnesses. As well as including several transcripts of conversations, EKR highlights the lessons learned from these seminars, as she calls them. It is generally considered to be a groundbreaking work in the field of death and dying, much as Oliver Sachs’ The Man Who Mistook His Wife for a Hat unveiled the field of psychiatry to the world.  In 1969, in a world of new technologies, especially in medicine, Elisabeth Kübler-Ross brings the focus back to the human being, a radical move at the time of writing.

It doesn’t take long before you realise that this book really is over fifty years old. The inherent sexism of the language she uses, and the assumptions EKR makes around class, religion, race and gendered norms sit a long way from the kinds of academic works we are used to in 2023. This is unsurprising, given that in 1969, only 8% of all medical students were women in the US. (In 2015, interestingly, just 34% of US doctors were women. But we digress.) The book is notable now for the view it gives us of 1960’s life in middle America, from the point of view of families who could afford hospital care. These people seem to be predominantly white, and usually married. The academic “he” used to describe all patients (unless EKR is talking about a specific woman) is both alienating and distracting. And the fact that she usually describes doctors as “he” when she herself is an MD seems ludicrous.

The trope that EKR is known for is the famous “five stages” (denial, anger, bargaining, depression, and acceptance) which have been analysed and applied to almost everything from grief to chocolate cake. EKR herself describes the stages as “an attempt to summarize what we have learned from our dying patients in terms of coping mechanisms at the time of a terminal illness.” The stages are lightly touched upon, sometimes illustrated with transcripts of conversations, and form just under 100 pages of the book, but have gone on to inspire countless other works.

What EKR and her team of theology students discovered is a universality to death and dying. Human beings can find it difficult to acknowledge the truly important. They need to be seen, heard and acknowledged as people in their own right, and to have a say in important decisions. The dying value kindness, and need to feel their dignity can be preserved. And they need to be allowed to detach from the world in order to die in peace (“decathexis”).

While some sections of On Death and Dying are disastrously archaic (she makes many assumptions about gender roles in households, for example), there is a good deal that was exciting and innovative in 1969. EKR warns against speaking about God to the newly bereaved, which would have been quite a departure from the accepted norms, and still is, in many parts of the world today. She also emphasised that the dying and their families need human support, but not necessarily that of a professional, which would have been considered a challenge to the medical profession.

The experience of coming face to face with mortality in a hospital setting was not something that had been studied in any depth before this work, and EKR’s gathering of interviews and observations made public a good deal of new information at the time. Many of the concepts she highlighted are still considered best practice today. These include:

A focus on the patient as a human being

Preferring plain speaking to confusing euphemisms

Remembering that the present moment is what we have

The value of preserving the dignity and autonomy of the patient as much as possible

So. Why read On Death and Dying? Well, it shows us how far we have come in five decades. (And possibly, how little has actually changed in terms of what people need when they are dying.) The transcripts of interviews are interesting, if you’re into ethnographic studies.

Avoid it if you’re…not a fan of academic works. Also, if the phrase “breadwinner” makes you gnash your teeth. The unrelenting blinkeredness (think class, gender, race, you name it) that was so common at the time can make this text hard going for a modern reader. There are plenty of great modern guides out there that won’t have you shrieking at the thought of a husband coming home after a hard day at work expecting to be ‘served’ by his wife.  Because of the serious subject matter, EKR can be quite dry in places.

I’m hoping this series of reviews will show you that death can be a laughing matter in the right hands (Laurie Kilmartin, I’m looking at you).

There you have it.

Elisabeth Kübler-Ross’s iconic book On Death and Dying.

You can get it at your library. Don’t rush out and buy it.

The Book:          ON Death & Dying; What the Dying Have to Teach Doctors, Nurses, Clergy & Their Own Families

The Author:       Elisabeth Kübler-Ross

The Year:            1969

The country:      US

Number of pages: 262 plus appendices