Why we need more poetry in palliative care

Abstract

Objectives

Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research.

Methods

A narrative review approach was used, drawing on searches of the academic literature through Medline and on professional, policy and poetry websites to identify themes for using poetry in palliative care.

Results

I identified four themes for using poetry in palliative care. These concerned (1) leadership, (2) developing organisational culture, (3) the training of health professionals and (4) the support of people with serious illness or nearing the end of life. The academic literature was mostly made up of practitioner perspectives, case examples or conceptual pieces on poetry therapy. Patients’ accounts were rare but suggested poetry can help some people express powerful thoughts and emotions, create something new and feel part of a community.

Conclusion

Poetry is one way in which many people, including patients and palliative care professionals, may seek meaning from and make sense of serious illnesses and losses towards the end of life. It may have untapped potential for developing person-centred organisations, training health professionals, supporting patients and for promoting public engagement in palliative care.

Introduction

I was first provoked to consider the role of poetry in palliative care by an editorial for the Christmas 2013 BMJ. I like reading and writing poetry, but until then I had not questioned why so few journals published it. This edition, however, offered an explanation, or even a defence:

Unlike religion, animal work and poetry are routinely excluded from the journal because we’re frightened of opening the floodgates. (More people want to write poetry than read it. Discuss.) ¹

What a marvellous metaphor—‘Opening the floodgates’—as if editorial policy might somehow hold poets in check. The observation that more people like to write than read poetry is possibly true, but surely could the same be said of research papers? In fact, a search through the online archives of The BMJ revealed hundreds of articles mentioning poetry, including the obituaries of doctors who read or wrote it, and poetry collection reviews, but also a former editor’s quip:

We’ve been publishing bad science for years. But bad poetry would be a really new departure. ²

So if an editor’s problem is how to sort good research from the bad, how might poems be selected? One BMJ experiment was to use the acronym ‘POEMS’ (Patient Orientated Evidence that Matters) as a means of conveying clinical research results in short, pithy ways.³ These pieces appeared alongside the editor’s choice and seemed quite popular. For Christmas 2013, the journal commissioned Haiku poems—a Japanese form in three lines of text of five, seven and five syllables only to depict a moment of perception. These were to describe research findings, which it called ‘a poetic form of tweeting’.⁴ One poem by Jeremy Holmes shows the potential of weaving medicine and poetry together:

Fit, fruit-fed, no cigs:

Old able. Autumn leaves fall

Slowly, gracefully ⁴

Short poems are attractive, but to focus on brevity alone feels constraining. Poetry and research do share a craft in writing that seeks to represent reality, to generalise and catch an audience, but poetry is also vulnerable and elusive, puts into words what others sense but cannot convey, speaks to many meanings and, if it is good, survives far longer.

One example of an English poem with enduring appeal is Auden’s poem Funeral blues,⁵ which the film Four Weddings and a Funeral promoted further, which led to it being used more often at funerals.⁶ There are also many funeral poem websites to help people find the right one for loved ones.⁷ Outside of funerals, however, there seems some fear that poetry may be going out of fashion. It is difficult to find recent hard data on the epidemiology of poetry reading in the UK, but the proportion of people reporting reading it appears to have declined in the USA.⁸ These figures are tricky to interpret because the way poetry is read—more often on the internet or at performances—has also recently changed. But part of the response to suspicions of a declining interest has been a range of national and international initiatives to read, discuss and get poetry into the classroom in accessible forms.⁹ Stephen Fry—an English actor and broadcaster who has had an enormous Twitter following—has encouraged people to understand and write formal verse,¹⁰ while writer and broadcaster Clive James has published a popular collection of poems reflecting on his response to a life-threatening illness.¹¹

In this article, I use palliative care to explore the potential use of poetry in healthcare. As a multidisciplinary area of practice, palliative care seems particularly suited to poetry because its practitioners seek to work in an explicitly holistic and empathic therapeutic manner. It is also an area that promotes us to reflect on the loss of those we love or care for, and on our own deaths. The recent popularity of first-person narrative works about the end of life has emphasised the potential that powerful creative writing has to raise awareness of the importance of palliative care.^{12 13} This synthesis is informed by searches of Medline, the websites of poetry, professional, policy and other organisations, but is a narrative review and synthesis rather than a formal systematic review. It is best seen as a reflection on and proposal of themes for understanding how health professionals and patients may draw on and use poetry in supportive and palliative care.

Poetry in leadership

The first point to make is how good leaders often master the effective use of poetic form. These two quotes by Dame Cicely Saunders, a pioneer of the palliative care movement, illustrate this and have been reproduced widely:

You matter because you are you, and you matter to the end of your life. ¹⁴

How people die remains in the memory of those who live on. ¹⁵

One reason for this is the poetic rhythm in these phrases that reaches out, taps into our minds and stays there. Cicely Saunders recognised the importance of creative writing and poetry, and published on this topic. In fact, a book she edited to celebrate 21 years of St Christopher’s Hospice, which she founded, was full of the writing and poetry of her patients and staff.¹⁶ It is not clear that she formed a judgement about its quality. She just knew that it was one part of the process of care that could do good.

Bravery with words is arguably a necessary part of leadership. A former English Prime minister Gordon Brown chose Cicely Saunders for a case study in his recent book Courage.¹⁷ He also reproduced one of her patients’ poems In the midst of life by Sidney Reeman, which she had published,¹⁶ to illustrate the gradual process of drawing close to death. This in turn prompts the question: when was the last time you heard a healthcare leader using a poem to make a point?

Poets, however, have always used poetry to make a political point, and in some countries simply writing has been a punished political act. The Irish Nobel prize winner Seamus Heaney describes how he recognised the power of new Irish poems in the 1960s to depict familiar scenes of potato farming and establish them as a valid subject matter.¹⁸ The British poet laureate Carol Ann Duffy has questioned the position of women,¹⁹ while Blake Morrison has criticised in ironic manner the behaviour of bankers and their bonuses.²⁰ Established poets do not generally write on one theme, but there is nothing to stop health professionals, patients and their advocates from using their familiarity with palliative care to convey its importance in poetry or even draw attention to a lack of access to good care for some populations.

Many have written in a persuasive way to promote poetry in palliative care, but here are two points from three leaders: David Roy in an eloquent editorial speaks of the need ‘to mobilise the poets’.²¹ He distinguishes between the published poets whom we should attract to promote palliative care and the unpublished poets—the practitioners—who should not be afraid to use poetry in their everyday conversations to nurture their patients. Jack Coulehan and Patrick Clary have written a landmark paper in which they explore the use of poetry as reflective learning to sustain staff through demanding work,²² and more recently, Jack Coulehan conceptualised how poetry and writing may be one way of enabling people to reconnect with small elements of everyday life so acquiring meaning and deep hope.²³

Poetry to develop organisational culture

The second theme is the culture of organisations that leadership creates and sustains. Would it be possible to use poetry as a kind of ‘glue’ to connect individuals together in more person-centred and caring institutions? As already described, Cicely Saunders included creative writing in the work of St Christopher’s Hospice,¹⁶ and an analysis of its arts service suggested this was one way of fostering patients’ hope, engagement in enjoyable social activities and of creating a sense of community.²⁴

Arts in healthcare programmes seem better developed in the USA than elsewhere, but in the UK this area is gradually gaining ground. The Nuffield Trust in particular has championed the role of arts in both healthcare and public health systems.²⁵ A 2007 Department of Health Working Group review,²⁶ a 2013 Royal Society of Public Health Report²⁷ and the All-Parliamentary Group on Arts, Health and Wellbeing²⁸ also review a wide range of arts services operating across many organisations. Each suggests that the arts should be seen as integral to health and that information about their use promoted and disseminated more concertedly. But two of these reports^{26 27} also reveal the need for more robust and well-designed research ideally in studies using conceptual models and qualitative methods to capture the specific effects on individuals, compared where possible with those who did not receive the intervention. Often poetry appears as an option within an art intervention, but one specific and interesting published example is provided by nursing staff at The Aberdeen Royal Infirmary. They sought engagement with their patients, visitors and the wider community using short poems on postcards stationed at particular points around the hospital.²⁹ The invitation to read and submit more poetry led to the submission of 100 new ones as well as the involvement of local poets in hospital readings. Another well-known initiative is ‘Poems in the Waiting Room’, a charity working in England and New Zealand to provide poetry cards to hospitals and health clinics.³⁰

Poetry for health professionals and trainees

The third theme is how poetry may help health professionals and trainees sustain empathy for their patients and engagement in their work. In the USA, Rita Charon has led the study of literature within medical education.³¹ She proposes that reading literature can help clinicians better understand the impact serious illnesses have on peoples’ lives, how clinical actions may further influence experiences in positive and negative ways, how patients’ stories may be understood as ‘illness narratives’ and how these are best listened to or elicited.³¹ Less has been written about the specific benefits of studying poetry, but Bromberg makes the case that it also sharpens analytic skills and allows the acceptance of ambiguity.³² An initiative to provide every doctor qualifying in Scotland in 2014 with a collection of poetry about medicine elicited the advice from one former BMJ editor:

You cannot be a good doctor without some appreciation of, and infusion, of poetry.³³

Ratcliffe also recently observed that attending poetry workshops gave health professionals a sense of improved well-being and a much needed space to reflect on their lives.³⁴

So could more health professionals write and submit poetry? Radwany and colleagues describe how staff can use team meetings to write poems in collaboration with poets to honour their patients.³⁵ A number of databases and organisations provide texts that might be useful for personal reflection and group teaching (box 1). Several medical journals do accept original poetry, and the international Hippocrates Poetry and Medicine competition that has been held annually since 2010 produces collections that include a growing number of poems about palliative care practice.³⁶

Box 1. Educational resources for poetry in medicine.

Organisations

• Association for Medical Humanities https://amh.ac.uk/

• Institute for Poetic Therapy http://www.poetrytherapy.org

• Lapidus https://lapidus.org.uk/

• Literature Arts and Medicine Database http://litmed.med.nyu.edu/Main?action=new

• National Alliance for Arts, Health and Well-being http://www.artshealthandwellbeing.org.uk/what-is-arts-in-health/national-alliance-arts-health-and-wellbeing

Some medical journals accepting poetry

• Annals of Internal Medicine http://annals.org/aim/pages/authorsinfoadlibitum

• Journal of General Internal Medicine http://www.jgim.org/

• JAMA http://jamanetwork.com/journals/jama/pages/instructions-for-authors

• Neurology http://www.neurology.org/site/misc/auth2.xhtml#REFLECTIONS

Poetry for people with serious illness or nearing the end of life

The final theme is how poetry may provide spiritual and psychological benefit for those who are very ill or nearing the end of life. For many people, poetry is just not their thing or school experiences have put them off, but for others early teaching may leave a kernel of interest, perhaps only dimly perceived, which can be returned to and opened later in life. For example, Tamba describes using traditional Japanese Haiku and Tanka techniques to compose new poems that acknowledge the achievements and anxiety of his dying patients and their families’ grief.³⁷ Some like Clive James¹¹ have always written poetry and may return to this after a serious illness. For those who enjoy reading poetry, discussing or writing it can become a means of expressing emotion, making sense of events and putting a biographical story together. Clare Wilmot, Medical Director of North Country Home in New Hampshire, lived through a serious malignant illness that left her exhausted, dispirited and unable to care for herself.³⁸ She describes what happened when, under the care of the palliative care team, the poet in residence at Shands Centre in Florida spent an hour helping with her writing.

Little by little I built up a compendium of poems that addressed what I was suffering. I shared these with the poet and eventually my family. The feedback was enchanting and encouraged another round of verse. The quality of the poetry was no measure of its effectiveness, but the effect of writing resulted in my being able to eat, because the act of expressing myself left me feeling better at mealtimes.³⁸

Pennebaker has long proposed that expressive writing can allow people to deal with difficult emotions in a way that helps coping and brings coherence in the face of disruptive events.³⁹ A review of the evidence in health suggested that ‘Finding one’s voice via poetic means can be a healing process because it opens up the opportunity for self-expression not otherwise felt through everyday words’.⁴⁰

However, the evidence base for formal poetry therapy is mostly case reports or expert opinion from the USA, suggesting the need for more robust qualitative research.⁴¹ This would mean the more systematic collection of reflections like those from Claire Wilmot.³⁸ One other interesting example of using poetry is a short poem as a mantra to help patients manage their breathing as one part of a palliative care package for breathlessness.⁴² Poetry for the relatives and friends of people who are nearing the end of life was not a focus for this review, but it is an area warranting further investigation. As well as providing solace to caregivers one narrative analysis study has shown how it may be possible by synthesising caregivers’ journal entries to create poems that give insight into the sense of chaos, anxiety and hope they experience.⁴³

So I hope I have explained why we need more poetry in palliative care and why poetry need not be seen solely as an extracurricular pursuit. In an increasingly secular world, poetry can be an important way of seeking meaning, finding some pleasure in situation, a connection with others and a means of raising awareness of the importance of good medical and supportive care. It might also be useful for sustaining health professionals’ well-being through good leadership and organisational culture, and as a method for wider public engagement. More comprehensive and robust models for the evaluation of arts in healthcare are now emerging.⁴⁴ I propose we are now at the point where we should develop and introduce imaginative poetry interventions and study their effects more systematically. It is time to try ‘Opening the floodgates’ just a bit.