Fragments and Silences: Rethinking Narrative in End-of-Life Care

Joe Wood considers the role – and limitations – of narrative in end-of-life care by way of hospice pioneer, Cicely Saunders.

 

Death is taboo. We live in a death-denying society. You can’t just talk about…death.

In death and dying research, the prevalence of these sorts of ideas is often taken for granted and, it is assumed, we need to do more to encourage people to talk and to tell their stories.

But we do talk about dying, all the time. We say our phone is dead, that we nearly died laughing, or that we’re dying to do something. And we keep a check on who’s dead – when a celebrity dies their book sells out and music downloads increase.

The bits of death we don’t talk about are those we understandably find distressing. When we ask how someone died, we want to know the medical cause rather than hear about the laboured breathing or incontinence of the process of dying. We’ll talk about a funeral but not necessarily about seeing a dead body. Most obviously, we won’t always talk openly about how sad we feel when someone is dying or has died.

For my part, I understand why people might not want to dwell on things that are painful or upsetting. Death is the ending of something and endings always have some element of sadness that the death positivity movement can’t quite capture. Endings are often also difficult to write.

Much is made of the benefit of narrative in both end-of-life care and the medical humanities. Talking about death is important for communicating what you want to happen to your body and your possessions when you die: it allows us to plan for the worst. Talking to those you love can also affirm relationships and resolve old differences.

Cicely Saunders, the subject of my own PhD, was one of the first doctors to advocate talking to people who are dying as if they are normal people because they are normal people. The act of narrating and being listened to is important for many dying and bereaved people because it allows them to take ownership of a situation in which the odds are against them. In medicine, and in palliative care in particular, this has been formalised into interventions such as life review or dignity therapy in which narrating is seen as consolidating and affirmative. What is initially a conversational narrative, a narrative for now, is recorded as part of an individual’s legacy, becoming a narrative forever.

Saunders is often acknowledged as the founder of the modern hospice movement, which eventually became palliative care. She championed the need for better care for dying people with the term of ‘total pain’, the idea that when you are dying of a terminal illness your physical pain is bound up with other psychological, social and spiritual pain or distress. She first articulated it in 1963 by describing a conversation with Mrs Hinson, a patient she cared for at St. Joseph’s Hospice, Hackney:

One patient gave me more or less the following answer when I asked her a question about her pain, and in her answer she brings out the four main needs that we are trying to care for in this situation. She said, “Well doctor, the pain began in my back, but now it seems that all of me is wrong.” She gave a description of various symptoms and ills and then went on to say, “My husband and son were marvellous but they were at work and they would have had to stay off and lose their money. I could have cried for the pills and injections although I knew I shouldn’t. Everything seemed to be against me and nobody seemed to understand.” And then she paused before she said, “But it’s so wonderful to begin to feel safe again.” Without any further questioning she had talked of her mental as well as her physical distress, of her social problems and of her spiritual need for security. (Saunders, 1964)

Those scholars who have paid attention to Saunders’ idea of ‘total pain’ claim it is based on narrative or tied to biography (Clark, 2000; Gunaratnam, 2012). Saunders made hundreds of recordings of conversations with dying people who, it is implied, were only able to communicate their complicated interlocking problems through the cumulative medium of narrative: And this, and this, and this….

And yet, when you look, as I have, through Saunders’ archives and through the transcripts of the so-called patient narratives you notice two things. Firstly, that for every Mrs Hinson there are dozens of patients who are more interested in talking about their next meal or their bedpan and who offer no grand narrative opportunity for Saunders. Secondly, that her transcripts read more like fairly patrician interviews with Saunders actively leading the conversation or being faced with polite 1960s deference to authority.

Saunders is clearly interested in her patients’ narratives in as much as ‘total pain’ assumes a holistic context-driven understanding of each patient. In her written papers in medical and nursing journals she does give lengthy narrative accounts of certain patients, which are fascinating and compelling. However, she is more likely to demonstrate a situation using a short quote. Mrs Hinson is often reduced to ‘all of me is wrong’, others to ‘it was all pain’, ‘I was in a vice’ – quotes that gesture towards a set of circumstances but don’t delineate them.

These work as fragments of a larger whole narrative which is implied but incommunicable. Moreover, fragments of narrative acknowledge how the written narratives collected by Saunders can never record all the non-verbal details such as touch or intonation which might also contribute to Saunders’ methods of listening. Fragments also allow more space for those who cannot or will not narrate their problems more fully (a frequent blind spot of recent conceptions of narrative medicine) and permit the silences which Saunders as often refers to in her writings but which are not always picked up in the clinical literature.

Narrative is not uncontested in medical humanities – have a look particularly at Sara Wasson’s recent article on fragments and chronic pain – but I suppose my provocation is that good end-of-life care, which is so much about the whole person whose life-story is coming to an end, might also be based as much on a single utterance that reduces an individual’s experience to a few anonymous words but, in leaving the rest silent, allows their experience to be communicated more universally.

 

Joe Wood is a PhD candidate in English Literature at the University of Glasgow, Dumfries Campus, examining the conceptual background to the idea of ‘total pain’ used by the hospice pioneer, Cicely Saunders. He is part of the Glasgow End of Life Studies Group and the Glasgow Medical Humanities Network. Twitter: @JoeCSMH and @EndofLifeStudy

 

Clark, D. (2000) ‘Total pain: the work of Cicely Saunders and the hospice movement’, American Pain Society Bulletin, 10(4), pp. 13–15.

Gunaratnam, Y. (2012) ‘Learning to be affected: Social suffering and total pain at life’s borders’, Sociological Review, 60(SUPPL. 1), pp. 108–123. doi: 10.1111/j.1467-954X.2012.02119.x.

Saunders, C. (1964) ‘Care of patients suffering from terminal illness at St Joseph’s Hospice, Hackney, London’, Nursing Mirror, (14 Feb), pp. vii–x.

 

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