Kate Binnie, yoga teacher and music therapist, writes:
In his brilliant book Being Mortal (2015) Atul Gawande calls for all healthcare professionals working with patients at the end of life to “help people to end their stories on their own terms”. He asks how we can do this if we don’t put the time into asking people about their stories and finding out what their terms are? These aren’t usually about medications and interventions, but about how they have lived and what is important to them. What has happened between the first and last breath, and what does it all mean?
The principles of palliative care which Gawande updates and reinforces half a century after Cicely Saunders’s founding work are, in fact, relevant wherever conversations about illness, loss, suffering, grief and death are happening i.e. across health and social care settings, in our homes and communities. At its core, palliative care is putting the individual’s experience first so that each experience of loss, death and dying is handled with authenticity, or what Buber described as the I-Thou relationship. This communication is vitally important for the patient and their family, whether it be a neonatal unit where a baby with underdeveloped lungs is struggling to survive; a surgery where a middle aged man talks with his GP about what turns out to be chronic lung disease; a care home where frailty and dementia take their toll; or in hospital geriatric wards piled up with people who can’t get home.
I work as a music therapist in a hospice where the majority of patients we see have cancer. Most of these cancer patients are in their sixties, seventies or eighties, but a significant minority are younger. Some have neurological conditions like motor neurone disease or advanced Parkinson’s, and many have COPD or advanced heart failure. Many older patients have several co-morbidities and may be struggling with cancer, diabetes, chronic arthritis and depression, for example. My role is to work with patients and their families who are struggling to cope with and adjust to what’s happening to them. We’re working towards finding out what their stories are, what they mean, and how to end them as well as possible for all concerned. Part of the time I see outpatients who visit day hospice usually during the last year or so of life, and I also work on the ward where people come for short periods for symptom control, or to die. A significant majority of these patients struggle with their breathing and anxiety – the two are inextricably interlinked and highly prevalent in most advanced disease. I don’t have any useful medical tools: just a violin and my voice. I also have a guitar and a ukulele, a mouth organ, a couple of drums and a Tibetan bowl. I have yoga and mindfulness techniques, and a psychodynamic training. Although talking often happens, music is the conduit and container for our sessions and often words are wrapped up in music and become a song. My job is to use all this stuff to form a relationship with the person in front of me, whether that is for one hour only or over several months. It’s not a ‘task-based’ job where a wound can be dressed or an injection given, and often I wish that it were. I spend a lot of time sitting in silence with people watching them breathe, modelling slow, calm regular breaths, or listening to them talk, or playing or singing for them as they rage or cry, go off to sleep, or while a canula or other medical intervention happens. There are also intensely creative, collaborative moments of song-writing where the end result is something said, sung and recorded for those left behind, something important and honest, loving and true. Most of the time we are employed with what are known as the Tasks of Dying: “ Forgive me, I forgive you, thank you, I love you, Goodbye.” As Havi Carel recently said in her inaugural lecture, being diagnosed with a life-threatening illness is a “violent invitation to philosophise” – I guess my role is to help facilitate this.
Getting involved with Life of Breath has made me think more closely about the importance of breath, breathing and breathlessness in palliative care. I have long used yoga-based breathing techniques in music therapy to down-regulate anxiety, to settle and relax, which in turn “opens the door” to therapeutic relationship and process. I agree with the Life of Breath project that breathlessness is the less glamorous, poorly-funded cousin of pain, and from my clinical and academic knowledge I see that physical pain at least can be well treated whereas breathlessness cannot – and it is just as ubiquitous, complex, and hard to measure as pain in many conditions that we will die from.
I recently began thinking about the connection between the first and last breath that we take. In the hospice we all know the journey will end with the last breath. Sometimes this last phase goes on and on, the patient and family living for days or weeks in a liminal state where the breath is as irregular and fragile as a butterfly.
I often feel like I’m part of a team of midwives supporting a person’s safe passage from one stage of being to another; in this work the cyclical nature of things is very apparent. At birth breath begins, and at death breath ends. We take about 7 million breaths per year. Average life expectancy in the developed West is about eight years, so that’s over 560 million breaths in one lifespan. At the beginning and end of life, these breaths may be fraught with dangers and uncertainty – here breath is not taken for granted.
I met a German music therapist at a conference a few years ago who worked with premature babies. She used the sung voice to babies in incubators whose lungs were dangerously underdeveloped. Her research showed that ‘parent-preferred’ (i.e. culturally appropriate) lullabies reduced heart and respiration rate and increased the sucking reflex. Singing to the babies made them breathe more regularly and easily. The butterfly breath became steadier, stronger and less fragile. It also gave parents a way of being with their baby that improved their outcomes and promoted bonding.
In the hospice, I have found that ‘lullament’ (lullaby/lament) works similarly at the very end of life as the patient moves towards their last breath, their family gathered around them, watching with their own bated breath for their loved one’s chest to rise and fall for the last time. Sometimes the butterfly breath disappears without the family noticing, or when they are in the loo or making a cup of tea. It slips away. Sometimes breathing is a fight, secretions causing a hideous rattle that can cause choking and distress for patient and family. If a patient is agitated, delirious and fighting for breath this end stage can be traumatic for all concerned. Patient, family and staff become locked into a triangle of anxiety where nurses move fast with tight lips and families panic and want to know what to do. The patient is trapped in a private battle to keep breathing. At times like these, I sometimes get called in to use music to soothe patient and family and ease the passage towards death. The idea is to hold the situation in music, to make something beautiful out of something scary, to bring together the family and patient and ensure that the last hours and the family’s memory of the death (which affects bereavement outcomes) are as good as they can be.
The first time I was called in by the desperate doctor to do this, I was terrified. I hadn’t a clue. The man in front of me was dying from mesothelioma, an aggressive malignancy of the lungs caused by asbestos exposure. He was trying to get out of bed on emaciated legs, dressed only in a nappy, clutching at his oxygen mask, gasping for breath. His partner and daughter were in position on either side of the bed: they were not related and the tension between them was palpable. They were almost fighting to be first in his field of vision, to be the most loved and the most involved. The poor man was just desperate to breathe: he couldn’t speak but he was crying out for space. I spoke first to the young daughter. Tears were rolling down her cheeks. I settled first her, then the wife, into chairs beside the bed, and the daughter held onto her Dad’s hand, soothing, stroking and reassuring. “That’s right” I sang, just as I would to a crying baby, “it’s all right”. I perched on the end of the bed with my guitar, singing what I could see and feel and imagine. I sang for all three of them and what they might mean to each other. I can’t remember what words I used, but they would have been to do with love, letting go, settling, soothing. The song would have been in a minor key (lament) and in three-time (lullaby). Gradually, the patient settled, resting back into the bed, allowing the mask to stay on and the oxygen to flow. I sang to him to breathe in, out, to let go, to relax. When all was calm, I crept out as if I had settled a fractious baby that might wake again at any moment. I was sweaty and drained. Later that day the man died, but his wife and daughter both found me to say how much that intervention had changed their perception of his death. I sensed their relationship may have shifted a little too, having gone through this profound experience together.
As we are (ideally) born, taking our first breath loved and treasured in a safe and individualised environment, so we would wish to take our last, however many breaths we may take in between.
Kate is a music therapist and yoga practitioner who works with patients suffering from anxiety, breathlessness and pain. She works independently and at two palliative care hospices and Maggie’s cancer centre in Oxford.