I have been feeling quite awry with myself in the last 14 months. Something of my natural order and understanding of hopefulness about living and survival has been challenged by recent experiences of loss that have come much closer to me than ever before in my life. I do not mean to sound morbid, or sorry for myself – as I often feel lucky to be in my second fifty years of life, before this has happened to me – but it has certainly felt profound, and brings me closer to understanding something about the practice of my music therapy colleagues working in palliative care, whom I much admire.
A mixture of close friend and family losses in 2010-2011, and also dear friends in music and music therapy have been part of this experience, and perhaps why I feel moved to reflect on the personal and professional together, and to recognise that hospice and palliative care colleagues are always faced with huge challenges to their personal-professional boundaries when they embark on this work. I have also got rather engaged in helping to set up placements in hospices in Aotearoa New Zealand (rather unconsciously in a way) and started attending more music therapy talks and day seminars on palliative care – some recent excellent ones at the XIIIth World Congress in Korea in July 2011. The timing of things is funny isn’t it?
My father Benedict died on 3rd June 2010 (NZ time) and 2nd June in the UK, and the experience of grieving for him with my family has been a starting point of this reflection. Some small examples of experiencing the value and power of arts in palliative care during my dad’s passing were very striking to me. I am reminded of Oliver Sacks quoting Nietzsche in A Leg to Stand on, where he observed that we have art "in order that we may not perish from the truth" (Nietzsche in Sacks, 1984, p. 81) and I certainly remember the idea of the arts and friendship creating survival, a curious sense of permanence and rescue last year when times were hard. Neither of my children Dori and Nino were able to attend their grandfather’s funeral as we live so far away now, but my sister Janet invited them both to record themselves playing a piece of music which could be shared at the start of the funeral (Dori a rich dark marimba piece True Colours by John Thrower, and Nino a guitar piece he had composed as a school assignment). It was a really touching way to include them, and it brought them very close for my mother Ann, siblings Janet, Wren, John and I as we walked in behind the coffin. When we were planning – by email and Skype – other music for the service, it was wonderful to discover that Benedict had told two of his granddaughters (my Dori, and her cousin Lucy) that he wanted Bach’s Air on a G String to be played – but nobody else. So the two granddaughters were able to say with great authority (backed by each other) that this was the music to play. We had a string quintet of three children and two grandchildren playing at the close of the service, confident in the knowledge that this was the piece (beloved by my dad in large part for its risqué connotations), that he wanted to be played.
My mum Ann, read to Benedict often in his last months, and a particular comfort to her was that she was reading poems from a children’s book, which included selections from Keats, Longfellow and Wordsworth, in the afternoon of his last day, and that process had soothed her especially. She wasn’t sure what to offer for them both in those challenging last weeks when he was very frail, but he loved reading, and she loved these poems, so it was a beautiful last offering. In reflecting back on each of these experiences, it is interesting that it was the bridge and connection between the living and the dying that seems so important in what the arts bring. It is such a natural and intrinsic part that I suppose I take it for granted, but I think this communication or sharing is what brings powerful support, relief, – joy even – during periods of intense sadness. You are losing somebody, yet the imagery, sound world, expressive capacity, memory, crystallization of intensity, whatever it is in the moment, paradoxically brings the loved person closer.
On a professional level, we have gained greatly in Aotearoa New Zealand from the international development of interest in music therapy within palliative care and oncology teams and the research that is growing in music therapy and music-medicine, and published in a wide range of professional journals. New Zealand Hospices, with international staff trained in Europe, Canada and America have had experience of the place of the arts and music therapy in particular, local clinicians are now reading the research, and we are delighted to see developments in employment and interest in student placements in the field in two of our main cities. Our most recent new placement at the West Auckland Hospice was initiated because members of the palliative care team there had attended a conference in Perth and were very impressed by a talk given by Louise Miles on Australian music therapy in hospice care. While attending the recent XIIIth World Congress in Seoul Korea, I witnessed an exciting range of papers that addressed all sorts of issues very helpful in informing a new field in New Zealand. For example, Lucy Forrest’s paper on multi-cultural approaches based on a study in Melbourne which brought to mind how valuable our learning on grief and care of the dying can be from non-Western cultures, ideas that were further exemplified by Sumathy Sundar’s and Gerhard Tucek’s roundtable presentation with Jorg Fachner exploring spirituality. Steph Thompson and Joy Allen’s respective presentations on group music therapy practice relating to women’s experience of breast cancer caught my attention and were highly illuminating (Thompson, 2011; Allen, 2011). Elisa Clark and Terry Blaine outlined their programme in New York State, to develop specialist support for student internships and this was particularly valuable guidance for me, in considering ways to develop student work in palliative care in NZ.
At a pre-conference workshop "Music Therapy and Oncology: International Clinical and Research Perspectives in Care across the Lifespan" on July 4th, it was impressive to see how practitioner values and delicate care for meaning and feeling for patients and families was interwoven with a real dedication to find valuable evidence for practice across all the music therapists presenting from four continents. I suspect that oncology and palliative care is one of the most ethically challenging areas in which to consider conducting research studies, and within the group of presenters, were offered highly respectful and creative approaches to controlling experimental studies within this population (Burns, 2011; Gao, 2011) and indeed for collating results of studies conducted in different countries, to create stronger effects (O’Callaghan & Magill, 2009). But in addition, excellent arguments were shared amongst presenters for re-negotiating the hierarchy of evidence, specifically because of the huge benefits of qualitative research bringing practice values and research approaches into close alliance. Claire O’Callaghan took these ideas further in her contribution to the Congress’s Spotlight Session on research, highlighting the way that music therapy’s research in palliative care has been able to raise the respect of qualitative studies in medical settings (O’Callaghan, 2011).
Returning to the personal, as I write this I am listening to the second movement of Tchaikovsky’s Piano Trio in A minor Op 50, "Tema con Variazioni", with playing full of vitality and interaction, recorded in 2009 by The Willow Trio (three young musicians who attended MusicWorks chamber courses in Hampshire, UK throughout their teens). I do not properly know this work, but I have fallen in love with the theme that Tchaikovsky weaves through the variations. The surprising emphasis on the second beat at the end of the two-bar phrases (bars 2, 4, 8 & 10) makes me smile and irresistibly invites movement.
I am also delighted by how the variations are portrayed by these young musicians and am reminded of the way that rhythmic subtlety, register and tonal colour of the three instruments can transform the original theme and characterize such different pictures of feeling. The pianist in the trio is Jacob Barnes, a very close childhood friend of our daughter Dori (from age four onwards) and our families have shared intimately and joyfully over fifteen years living in Canterbury, UK (from 1991-2005). Jacob died at the age of 21 in April this year, after managing the symptoms and treatment for leukaemia over nearly two years, an incredibly difficult and distressing journey for him. This has created a huge and terrible loss for Jacob’s family and indeed for so many of us who have loved him growing up.
Yet during his dying, Jacob did a remarkable thing with his musicianship that consoled, supported and inspired everyone around him. His love for chamber music was well known to his parents, friends, teachers and colleagues at the Royal Academy of Music in London where he had been progressing through his professional training as a pianist. Whenever the illness and treatments permitted him, Jacob was practising and performing, very often chamber works, and he decided with his family that he would continue a series of concerts in his last four months, after discovering the illness had resumed following his bone marrow transplant (a really shocking discovery at Christmas of 2010). We were not able to be present at the concerts, but Cherry and Jonathan, his parents, have sent recordings, and we have shared many, many reflections with family and friends on the amazing impact of the process of the concerts and Jacob’s playing with others. I spoke to Jacob on the phone and Skype a few times during those months, and he was so immediate and in-the-present about the music he was sharing with friends and eloquent about how valuable it was to him to keep involved in the thing he so passionately loved. Tributes by his friends in a memorial on Facebook after his death referred to how moved they were to play with him, that the music created was at a new depth and meaning, a rare and deeply memorable experience, also shared by audience members who have heard the concerts, live and recorded.*
I have recently read and re-read The Year of Magical Thinking as Joan Didion tried to make sense of her husband’s sudden and very untimely death. I was aware of my own attempts at magical thinking with Jacob, arranging to send him daily postcards from New Zealand in January and February this year, thinking we could somehow keep him alive as long as we kept writing them. It was curious, because although there was something desperate in doing this, it had a consoling effect for me personally: there was a value in making a time each day to think, to choose the picture and the words, to compose and reflect. I wonder if music therapy in palliative care sometimes has something of bargaining about it too? Despite the gravity of illness, we can still make this afresh now, immediately, and the live-li-ness of the experience holds in the memory, keeps the living quality of our shared experience, and then of course preserves and consoles the bereaved after a relative or close friend has died. Oncology and palliative care colleagues write with abundantly more expertise and knowledge of such processes, but perhaps readers will forgive my slightly naïve insights discovering this personally for the first time.
I join international friends and colleagues in being so very sad at the recent loss of our champion, music therapist, organist, viola player, PhD supremo, professor, writer, chair of many organizations and events, and cherished friend of so many of us, Tony Wigram. Many of us on this side of the globe were incredibly sorry not to be able to go to Tony’s funeral, and to share our loss with Jenny, Michael, David and Robert his close family, and music therapy friends in the UK. However it was an appropriate place to be at this time – a World Federation of Music Therapy Congress – an organization to which Tony has made so many lasting contributions over twenty or more years, including being one of its Presidents. There was a real consolation joining with colleagues round the world, remembering Tony in his many roles and acknowledging the extent of his contribution. As I finish this column I have learnt of the recent publication of a new Cochrane Review on music therapy in cancer care by Joke Bradt, Cheryl Dileo, Denise Grocke and Lucanne Magill (August, 2011): Tony would have been delighted at this next exciting step in music therapy research evidence.
My abiding memory of Tony and of Jacob, my young friend above, is the vividness of their presence as musicians – pianists and passionate communicators both. Despite finding very little that is understandable about their loss in recent months, hearing music that reminds me of them, or listening to actual recordings or film of their playing makes them rush back into the present. Thank you, Tony and Jacob, for bringing music and people into such strong and compassionate connection and for loving what you did as musical communicators. It is - and will continue to be - such an inspiration.
*Jacob Barnes’s family has established a scholarship for chamber music in his name at the Royal Academy of Music, London, to help future music students with a special commitment to ensemble musicianship. Please contact the author if you would like further information or to make a donation.
Allen, J. (2011). The effectiveness of group music psychotherapy in improving the self-concept of breast cancer survivors. Proceedings of the 13th WFMT World Congress of Music Therapy, July 5-9th 2011 in Seoul, Korea.
Bradt, J., Dileo, C., Grocke, D. Magill, L. (2011). Music interventions for improving psychological and physical outcomes in cancer patients. Cochrane Database of Systematic Reviews (Online) ISSN: 1469-493X, 2011 Aug 10; (8); Cochrane AN: CD006911; PMID: 21833957
Burns, D. (2011). Music therapy research, North America (review of historical and current research studies, quantitative and qualitative). Pre-conference Workshop: ‘Music therapy and oncology: international clinical and research perspectives in care across the lifespan.’ 13th WFMT World Congress of Music Therapy, July 4th 2011 in Seoul, Korea.
Blaine, T. & Clarke, E. (2011). Hospice music therapy internship training for students and supervising clinicians. Proceedings of the 13th WFMT World Congress of Music Therapy, July 5-9th 2011 in Seoul, Korea.
Didion, J. (2005). The Year of Magical Thinking. London: Fourth Estate.
Fachner, J., Magill, L., Sundar, S. & Tucek, G. (2011) Music Therapy and spirituality in healthcare: multicultural theories, approaches and research [Roundtable]. Proceedings of the 13th WFMT World Congress of Music Therapy, July 5-9th 2011 in Seoul, Korea.
Forrest, L. (2011). Meeting the needs of a culturally diverse community in palliative and bereavement care: implications and considerations for music therapy. Paper to the 13th WFMT World Congress of Music Therapy, July 5-9th 2011 in Seoul, Korea.
Gao, T. (2011). Music therapy in oncology in China (review of current work and clinical practices and related research studies). Pre-conference Workshop: ‘Music therapy and oncology: international clinical and research perspectives in care across the lifespan.’ 13th WFMT World Congress of Music Therapy, July 4th in Seoul, Korea.
O’Callaghan, C. & Magill, L. (2009) Effect of music therapy on oncologic staff bystanders: A substantive grounded theory. Palliative Support Care, 7, 210-228.
O’Callaghan (2011). Practice-based research in oncology and palliative care. Proceedings of the 13th WFMT World Congress of Music Therapy, July 5-9th 2011 in Seoul, Korea.
Sacks, O. (1984). A Leg to Stand On. London: Duckworth.
Thompson, S. (2011). The impact and effect of group music therapy for women with breast cancer. Paper to the 13th WFMT World Congress of Music Therapy, July 5-9th 2011 in Seoul, Korea.
Hoskyns, Sarah (2012). Professional and Personal Thoughts on Music, Loss and Palliative Care. Voices: A World Forum for Music Therapy. Retrieved May 15, 2013, from http://testvoices.uib.no/?q=fortnightly-columns/2011-professional-and-personal-thoughts-music-loss-and-palliative-care