Participatory After Death Care in a Children’s Hospice

Author Kelly Oldham – Kelly is Paediatric Palliative Care Nurse Practitioner and Lead for Hospice in the Home at Hummingbird House Children’s Hospice Queensland.

 

Hummingbird House (HH) is Queensland’s only Children’s Hospice, offering a community approach to palliative care services for children, young adults and their families. Care at the hospice can be from the point of diagnosis through to the end of the child’s life, including After Death Care (ADC) and bereavement support. This article will discuss how ADC at HH has grown and developed – particularly towards what we call ‘participatory ADC’ – since the service opened nearly five years ago, and the importance and impact of this care for the many families that are introduced to us.

HH has adopted a public health approach to death and dying and within this model of care invites families to have the control and confidence to approach the death of their child in a way that is uniquely fitting for them. Since opening HH has provided participatory ADC for 127 children and their families either in the hospice building or in the child’s own community. During this often-precious time, the family and their community are supported with an unhurried approach to spend time with their child’s body and, honouring them in a way that is appropriate, which may include cultural and spiritual practices in the hours to days following, as the family prepare to say farewell. This additional time allows families to create and share precious memories and to begin the initial process of mourning.

 

The impact of this care is best described in the words of a Mother who experienced, with her family, ADC at HH, ‘the difference this service makes is that it gives your heart a chance to catch up with what your mind knows has happened’ (Bonne Utz, Mother to Frankie). Frankie died at Hummingbird House when he was eight months old. Frankie’s parents Bonnie and Brendan along with siblings Lilly and Molly stayed close to Frankie’s body at HH for one week after his death. During this time the family were supported to rest, take time and create memories. Bonnie remembers this time fondly and says, ‘for as long as we wanted, we were able to continue touching, talking to and holding our beautiful boy’. The team supported the family to gently step into the space of planning a goodbye ceremony for Frankie, which was held on the rooftop garden at the hospice. It was a beautiful ceremony to honor Frankie’s life in a way the family wished and in a familiar and supportive environment in which all the family could stay together.

The care during this period cannot be hurried; families need time to rest, pause and reflect on their child’s life in a way that is uniquely honoring to them. This may include cultural practices or personalized ritual and meaning making. For Jenna and Steven there was no more fitting place for their Son Archie’s funeral than under the Mango tree in the hospice backyard. Archie had spent the final hours of his life in this space with his parents and twin brother Henry, under the stars on a warm summers evening. As a family who embraced the outdoor lifestyle, they wished for Archie, who had spent his life in hospital, to experience being outdoors and under the warm Australian night sky. Archie died aged five months as the sun was rising, his funeral, a community led gathering took place six days later under the mango tree as the sun was setting.

The death of a child is profound, and nothing can reduce the pain of loss and grief. The importance of space and time for families to experience what is happening without being rushed and moved along within a system is vital. What is witnessed at HH when time and space is gifted is a natural pause to find a breath and a moment to reflect. Within these moments of reflection, we see pain and grief sitting naturally alongside love and joy. When families are given supported time and space, they can create beauty and meaning that can lay down the foundation for taking the next steps into a future in which their child is no longer physically present. This type of care supports families to lean into their pain and with this we witness time and time again families finding their breath and stepping into a space of mourning and creation to honour their child’s life.

 

When Jax Edwards died in 2019 his family honored Jax by ensuring every aspect of his farewell was a representation of the life he lived. Their acts of ritual and meaning making included the customization of his coffin which the family spray painted themselves to ensure Jax was held within their love and just the right shade of blue.

The role for HH during the ADC period is often one of guidance – sometimes families and communities do not know what the possibilities are because as a society we have become accustomed to accepting a medical approach to death and dying. What we at HH call ‘participatory ADC’, where families are full active participants, with control and confidence, and with new information, possibilities, and decision-making capabilities, has the potential of a ripple effect within a community and can be far reaching. As families share their experiences and we hear of siblings, cousins and school friends who have been involved go back into their schools and community, teaching their peers and elders how to approach death with connection rather than isolation.

 

 

Photos courtesy of Hanneke (HH Volunteer photographer) and Elham Day (HH Family and Community Support Manager).