In this series, The Arts in Palliative Care, we look at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.
Victoria Swan, Music Therapist at Demelza Hospice Care for Children, South-East London, UK.
Memory making is an important part of end-of-life care as it can provide families with positive shared experiences, creating lasting memories that can be treasured for years after a baby has died. At Demelza Hospice Care for Children, staff adapt our care and support to meet the social and cultural needs of the children and families who access our services. A one-week-old baby and his mother arrived at Demelza for end-of-life care. I introduced myself, offering to provide music therapy sessions as part of the infant’s care. The main objective of these sessions was to offer a private space to reflect, and a creative opportunity for mother-infant interaction, amid the trauma of birth and imminent death.
During the first of twelve sessions, the mother held her baby whilst I sang, supporting her to play and sing to her baby. By session three, the mother began to share lullabies from her childhood in Nigeria. The mother explained that in her culture, when a person dies they still exist but now inhabit the spirit world where they can be at peace, taking their place among the protective ancestors. From here they may be reincarnated and live another life. She described an important death ritual involving musicians who sing to guide the ‘spirit’ of the deceased, enabling them to be initiated into the group of ancestors.
When the baby died four weeks later, the mother asked me to sing to him in the bereavement suite to fulfil the role of spirit guide. I had not entered the bereavement suite before and I felt nervous. As a mother myself, I considered the impact on my wellbeing. I am not medically trained but did explore these feelings in my clinical supervision.
I entered the room and was immediately struck by the intensity of the cold. How had I not thought about how cold it would be? I looked at the baby’s lifeless body in a Moses basket, wrapped in handmade blankets, and was relieved to see he looked peaceful. I began to sing, accompanying myself with the acoustic guitar. Once I began to play the intended purpose of the music filled my mind. I felt honoured to offer this unique intervention. The music was reflective, gentle, and included themes from our twelve sessions when the baby boy was alive.
“You don’t know how much this means to me.”
The mother’s response after I had played to her baby in the bereavement suite.
This grieving mother desperately wanted her baby’s next life to be healthy, happy and long, in such contrast to this life. Her faith led her to believe the music enabled the baby to fulfil his mother’s wishes for him. This experience has led me to reflect that it is essential that all professionals in palliative care take a broader view around cultural elements of death. There should be an emphasis on skilful and compassionate communication with the families we support, and the professionals we all work alongside, to value, promote and enable cultural difference. It was a priority and responsibility to respect and adapt to this mother’s emotional, spiritual and cultural beliefs as part of her baby’s end-of-life care and bereavement support.
Pavlicevic, M. ed. Music Therapy in Children’s Hospices: Jessie’s Fund in Action (2005) London, Jessica Kingsley Publishers.
Links and resources
- Contact Victoria by email.
- Jessie’s Fund (a charity that helps children with serious illness, complex needs, and communication difficulties through the therapeutic use of music).
- British Association of Music Therapy.
- Connect with Demelza at:
- Demelza website.
- Demelza Youtube.
- Twitter @DemelzaHospice
Read more post in the Arts and Palliative Care series on the EAPC Blog.