Cookies on the ehospice website

We use cookies to ensure that we give you the best experience on our website. We also use cookies to ensure we show you advertising that is relevant to you. If you continue without changing your settings, we'll assume that you are happy to receive all cookies on the ehospice website. However, if you would like to, you can change your cookie settings at any time.

The last chapters of life

Author: Dr Ros Taylor, MBE, Clinical Director at Hospice UK
17 February 2017

In hospices and hospitals, bedside tables are rarely without a book. Dr Ros Taylor MBE began wonder what meaning lies behind reading choices when time was short.

Palliative care takes time, but often we simply don’t have it.

Yet the discipline expects us to navigate the inner world of the patient, discover what really matters to them, what makes them tick and what lifts their spirit as they stare death in the face. So how can we engage quickly and authentically?

Professor Harvey Chochinov, in his extensive research on what underpins dignity, has suggested that what is really key is to be seen by others as how you wish to be seen. Not as a frail, incontinent lady in Bed 6 but as a capable woman who used to be a remarkable headteacher. Not a weak, emaciated, irritable man in Bed 4 but an ace retired policeman with many brave stories to tell.

So how can we get to the heart of who our patients are in a moment?

It’s easy on a home visit. A story unfolds from the moment the doorbell is answered. The clutter or perhaps the tidiness, the colours, the pictures on the walls, the photographs, the pets, the birthday cards, the unwashed dishes – we instantly gather the evidence to understand the person and their predicament a little better.

But in hospital there are no such clues. Just a body and its symptoms. Or is there more? Can we retrain our observational powers that used to be so critical in medicine. There are the objects that the person brings with them, and it seems that these may be clues that need to be noticed and understood. Professor Allan Kellehear has explored the objects at the bedside in his research.

The many chosen objects often included something very unique about the person, or connected the person to their home.

My own study simply looked at the books people bought into the hospice, and more recently into the hospital. Over several years I noticed that many people had books at their bedside, even if they were too tired to read. I started to notice the titles, and with consent, took a photograph of the title and enquired about their book, to discover if there was meaning behind the choice.

The ensuing discussions were always insightful, funny, engaging and led quickly into what was playing on the patients mind.

I remember a lady of 83, dying of cancer of the oesophagus. She had Fifty Shades of Grey on the bedside table. It looked unlikely reading material and definitely worth a conversation! So much more revealing than talking about what she could and couldn't swallow!

I asked her if she was enjoying the book.

The nurses and doctors on the ward round with me winced with embarrassment. Dorothy answered that she hadn’t read it, but her daughter had brought it in to cheer her up! So we talked about her only daughter, who was unmarried, had depression and how worried Dorothy was about her.

The small talk about the book, led to big talk about her fears for her family and her sadness to leave her daughter. In an instant, we unraveled what mattered to Dorothy.

Over the last three years I have thematically analysed the types of reading material that people have consciously or unconsciously chosen to bring in to hospice or hospital for the last chapter of their life. The patients I spoke to were pleased and intrigued to talk about what was on the bedside table.

Optimism and hopefulness

The first theme relates to optimism and hopefulness. Examples includes Barack Obama’s ‘Audacity of Hope’ and Nelson Mandela’s ‘Long walk to Freedom’. These were often long books, unread, almost like a transitional object, a hopeful title that might magically change the future, bargaining for more time. John was reading ‘Unbroken’ by Laura Hillenbrand. The strapline on the cover had words like ‘survival’ ‘resilient’ and ‘redemption’. Strong words for a man who told me that he didn't believe the results of his scan, that he was going to beat his cancer.

Here and now

The second theme is here and now – car magazines, tabloid newspapers, Hello magazine. This seems to be an attempt to distract from the future, an attempt to stay with the frivolous, even though the person may not see the next instalment of the headline. Despite leaving the world, the present moment mattered.

Derek was reading a luxury yacht magazine. He would never sail again. Never reach his ambition of a part share in a yacht. He had weeks to live from his cancer of the pancreas. We talked about boats, holidays, things remembered.

The classics

The third theme is classics. Poetry and childhood favourites such as ‘Alice in Wonderland’. Somehow these titles were comforting, connecting people to safe times in the past. The poetry books were often read – a short attention span supported poetry as accessible, often with a bookmark at a favourite poem, sometimes earmarked for the funeral. Angela had selected poems by Rilke at her bedside. Ray was reading Bob Dylan lyrics and we talked about his favourite song, ‘Forever Young, when he knew, sadly, he was never going to be old.

The macabre

The fourth theme is the most fascinating – many people had macabre thrillers and crime novels with them, many with overt themes of death. Many patients hadn’t noticed these unnerving titles and hadn’t thought consciously how the books might relate to their own circumstances.

Mary had two books at her bedside. She was dying of bowel cancer and had recently heard that the chemo wasn't working. By her bed were two books by Peter James, ‘Not Dead Yet’ and ‘You are Dead’!

I noticed these immediately and picked up Not Dead Yet. I asked if this was about her. She laughed and hadn’t connected the title with her own situation. This led onto a really important conversation about her wishes for her remaining life, the conversations and reconciliations she was planning. Within two minutes of meeting Mary, we were able to discover what was really important now that her life could be measured in weeks.

In a similar vein, Arthur had a book called ‘Hold on Tight’ by Harlan Coben. I asked him what he was holding on to. He talked about his life, his wife, his fears, his regrets.

Other examples included ‘The Big Sleep’ by Chandler and ‘Lone Survivor’ by Luttrell. Dr Lucy Kalanithi, widow of the late neurosurgeon Paul Kalanithi, author of the best-selling memoir ‘When Breath Becomes Air’, said the thing that comforted Paul most during his illness was literature and poetry. My study really echoed this.

The clear message is that observation is a key skill and the ensuing small talk, about books, objects, photos, can quickly become big talk. It is said that doctors have lost the gift of normal chatter, of critical rapport, in the desperate race to gather symptoms and diagnoses. An insight into the person with the illness, rather than an insight into the illness itself teaches us so much more.

Some of this social chatter, observation of the micro-environment around the patient, may feel like a risk, but one worth taking if it helps us to understand the patients world, give a cue to identity and to develop warm engagement in the midst of suffering. In my experience, it is a shortcut to the essential!

This study was presented as an oral presentation at the 21st International Congress on Palliative Care in Montreal, October 2016, and forms the basis of a future longer publication.

Meanwhile, Bloodhound Books, an independent publisher of crime and thriller fiction is supporting Hospice UK with the proceeds from ‘Dark Minds, a collection of short stories from leading authors across the UK and internationally.

Share article

Article tags

See more articles in Research

Comments | 0 comments

Hide
There are currently no comments. To be the first to make a comment...


Add comment

Denotes required field

Your Name

Email

Comment


Top Jobs

Recommended Events