‘In the din of medicine, what are the voices of our patients, what are our voices, that they become so hard to hear?’ (1)
Last week I spent a truly enlightening day at Manchester University’s Medical School. I was there to contribute to a day of seminars on the topic of Significant Illness, run by Dr. Sarah Collins. Brilliant and inspiring, Sarah is course director for the MSc Medical Humanities and Senior Lecturer in Communication. Students come to Significant Illness sessions to hear former/current patients talk about their experiences of living with a ‘significant illness’. Two women came to speak about being diagnosed and treated for cancer. I was there to discuss patient/carer/doctor dialogue and palliative care, but also, as the first poet to visit the centre, to run poetry workshops exploring poems about the body.
The day was all about communication. It was set in the Consultation Skills Learning Centre, where Sarah teaches Clinical Communication. She aims to encourage a relaxed and informal atmosphere. There was lots of food and drink provided, to sustain us throughout the day, and we needed it. The talks are frank and can be distressing, but Sarah provided a safe place for everyone, including the students, to talk openly about their views. We started with a discussion in small groups about what ‘palliative’ means. I admitted to the students that I have always interpreted ‘palliative’ as a hopeless word. Its connotations for me are negative and desperate. The medical students however, saw its meaning change, and adopt different levels of significance depending upon the age of the patient. If the word was attributed to a child, they understood my interpretation, but when applied to an elderly person, then the word became more positive. ‘Palliative’ became about making people ‘comfortable’, about enhancing the quality of a life, however limited, not a failure to save one.
In workshops that followed we discussed poems about diagnosis by Raymond Carver, Sharon Olds, Jon Glover. I had to remind myself I was not working with creative writing students, so acute was their understanding of the texts, so engaged were their responses.
One thing that really struck me is how much I assumed the students inherently understood the patient experience. I was surprised how much they welcomed not only the poems but also Debbie’s story, about her diagnosis and treatment for breast cancer. I began to realise she was telling them something ‘new’, when she explained the impact of diagnosis, on her and her husband. I expected a medical student to already appreciate the range of emotional reactions, or to foresee what oncologist Samir Guglani, Director of Medicine Unboxed has described as the ‘charged world of the medical encounter’ (2) This is not a negative observation. I’m beginning to understand, that just because it’s happened a lot in my family, not everyone has experienced ‘death’ and ‘dying’. For some medics, the world of hospitals may be their first encounter with serious illness and bereavement.
Poet and editor Jon Glover, has written about living with Multiple Sclerosis in his collection Magnetic Resource Imaging. He and I have talked about the ‘alien world’ of the hospital, and people’s behaviour within it.
He says: ‘I am always amazed that they (medics) can seem interested, calm, helpful, sympathetic, gracious when they have just said something that changes one’s life. And they have said it to five people that morning and five more that afternoon, no doubt. And then they go home to tea.’
The poems led to an interesting discussion about how to communicate ‘bad news’. How acceptable is it for doctors to reveal their ‘human’ side? With that come questions of vulnerability, professionalism and respect. In a telephone call with Samir Guglani, I told him about the consultant who came to see my husband and I within an hour of our daughter’s death. She had been part of the team trying to save her, or rather prolong the little life Ella had left, at what was a very traumatic time in intensive care. Whilst talking to us, she began to cry, but abruptly stopped herself. She said she was being unprofessional. I wanted her to cry. We had looked to doctors all through Ella’s life for advice and help and knowledge. For them to cry, surely that would prove to my husband and I, that what had happened was terrible? We shouldn’t have to accept it. I felt cross that she chose to censor her response. When explaining this to Samir, he asked me to consider what right did she have, to intrude on our grief in that way? Could it be be detrimental if she was to place her own sadness upon us?
On sharing this with the students, they agreed that ‘getting it right’ was challenging in the complex world of communication within hospitals. They were keen to overcome it, find an answer. In the end, we decided that time was an important factor. Although time is the most difficult thing to claim more of, we agreed it was needed for initial reactions to be understood, not misunderstood, between doctor and patient. Time spent in a room with a clinician is almost suspended in some way, it doesn’t feel real, especially at that moment of explaining bad news. There is almost a freezing of time, when the patients’ senses become extremely heightened. Glover’s poem ‘Back to the Diagnosis’ ends with him leaving the room, after an appointment with his consultant, and going ‘out to the corridor/and the waiting room and the files and the right time.’
After a writing workshop in the afternoon, where students read poems about all kinds of bodies by Jo Shapcott, Jean Sprackland, Neil Rollinson and Clare Best, they then began to write their own ‘body poems’. The day ended with a reading from Her Birth. I read to medical students and clinicians, writers and writing students from the city, actors who are ‘simulated patients’ at the hospital, as well as music and art therapists from hospitals in Manchester. The setting was the most unusual I’ve read in so far: mock consultation rooms, where the students learn and practice. Nothing like a full-size skeleton as backdrop.
The students seemed keen for more days like this, where they are given the opportunity to learn from ‘the voices of our patients’ and express themselves creatively. I spent the day with intelligent young people, who absorb a vast amount of knowledge daily. They learn intensely, but many of them miss literature. There is ‘no time’ for it in their studies and yet they feel they could learn so much from it. It was wonderful to see the students responding so vibrantly to the poems they read and heard that day. I am very grateful to Sarah for inviting me to the centre, and for letting me devise workshops for the day. It was a day of learning for everyone involved, myself included and it felt so positive to be using poetry in this way. It was a privilege to spend time with the students. I will leave you with some of their revealing thoughts about the day.
“As a former literature and languages student, it was really refreshing to dip back into that world an indeed learn more about the bridge between art and medicine. I feel that my arts degree has truly enriched my view of our world and of people and of ‘the human condition’ – and as such has added so much to my study of medicine – coming to the reading has enabled me to reconnect with this.” (Olivia George, Year 2 Medical Student)
“It was really nice to have something involving literature as this is an interest of mine that it is hard to explore while doing a medical degree.” (Sam Button, Year 2 Medical student)
“I believe that introducing the power of poetry into medical education can make a difference in the way medical students approach their patients….Coming to the session really helped me consider how we as medical professionals can make a difference to families affected by bereavement – empathy is fundamental for healthcare workers and this form of poetry really helped me revisit its importance. The role of poetry is hugely underestimated in medicine and medical communication – needs to be promoted and encouraged!” (Sargam Vohra, Year 3 medical student)
“I really enjoyed attending the workshop. It was very comforting to listen to poetry about medical conditions. Being a medic means I think about medicine for a long time, so it can sometimes get overwhelming. But looking at medicine through poetry is healing and restoring. I think poetry gives medicine a more humane perspective. The workshop gave me an opportunity to think deeply and philosophically. I would love to attend more workshops like this.” (Zarat Queen, year 2 medical student)
“An interesting session……relevant to our studies but also cathartic and helpful personally. A useful reminder of why we are going into medicine! Something different, enriching our experience of the course.” (Bethany Butcher, Year 2 medical student)
“We were taken through a whirlwind tour of real patient experiences of hospital life and treatment at the same time as considering the ethical, emotional and philosophical aspects to debilitating illness, death and bereavement. As well as being fantastically enjoyable throughout, it was a brilliant way to introduce second year students to the lay person views and the importance and significance of understanding death and the roller-coaster ride involved for patients.” (Matthew May, 5th year medical student)
Dr Sarah Collins and I during the post-reading Q&A
Notes: Quotes (1) & (2) from ‘The Art Of Medicine: Medicine’s Human Voices’ by Samir Guglani, The Lancet, Vol 384, Sept, 2014