Carolyn Ellis and I have been partners for more than a decade. Shortly after we met in 1990, Carolyn sent me a draft copy of a book manuscript she had written entitled Final Negotiations (Ellis, 1995). The book described in detail the history of Carolyn's nine-year relationship with Gene Weinstein who died of emphysema in 1985 (Ellis, 1995). As I read through the chapter in which Carolyn told the story of her brother's death in an airplane crash, I felt as if all my senses were being pricked. I had never before read a social science article in which the researcher wrote from the source of her own grief, openly expressing what it felt like to be stricken so suddenly, refusing to gloss the layers of conflicting feelings, the exciting rush of adrenalin countered by the deadening fog of numbness, the waves of hope and despair, and finally, the struggle first to choke down, then to grope toward an understanding of the meaning of her suffering and loss.
In Northern Ireland, access to good quality palliative care is an accepted and expected part of modern cancer care. The “Transforming Your Palliative and End of Life Care”…
In Northern Ireland, access to good quality palliative care is an accepted and expected part of modern cancer care. The “Transforming Your Palliative and End of Life Care” programme “supports the design and delivery of coordinated services to enable people with palliative and end of life care needs to have choice in their place of care, greater access to services and improved outcomes at the end of their lives”. The purpose of this autoethnography is to share the author’s lived experience so that it might be used to improve services.
Autoethnography is employed as the research method. The author describes her experience of caring for father over the last six months of his life. She explores the tensions between the different players involved in the care of her father and the family and the internal conflict that developed within her as daughter, carer, care coordinator and doctor. Using multiple data sources, selected data entries were explored through reflexive, dyadic interviews to explore the experience and meaning in each story.
The author found that autoethnography was a powerful tool to give voice to the carer experience. Narration can be a powerful tool for capturing the authentic lived experiences of individuals and families and is a tool seldom utilised in integrated care. This account provides an insight into the author's expectations of integrated palliative care, as a designer and implementer and now an academic in integrated care and concludes with some reflections about the gap between policy and practice in palliative care services in Northern Ireland.
Autoethnography can be a powerful tool for capturing the authentic lived experiences of individuals and families and is an essential component of the quadruple aim.