My grandfather died in my arms and it was one of the most meaningful experiences of my life. Pa was a determined, some might say stubborn man who was buried on what would have been his 95th birthday. A farmer, his body had been strengthened by years of hard work and it seemed he hung onto life with an anxious desperation. In the end Pa died peacefully in the residential aged care facility where he had lived for three years, in the town that was his home all his adult life. Having been an infrequent visitor due to living away for work, I had the honour of being with Pa when he died, keeping a solo vigil in the hours before his death. As a Social Worker with a focus on palliative care and ageing, I curiously watched the approaches of the different aged care workers in the time leading up to Pa’s death and the time immediately after he died, wondering how the carers grew to understand death care. Some workers seemed at peace in the space of death providing gentle care, others avoidant and less comfortable in the presence of death, inspiring me to commence a PhD to seek to understand more about how residential aged care workers approached caring for people as they die.
In my research I was honoured to speak to residential aged care workers about their relationship with death, how they find meaning when a resident they care for dies, and how their relationship with death impacts on the end-of-life care that they provide. Through the course of my research I discovered each of us carries what I call a Death Story, a narrative around death and dying that informs how we make sense of, and respond to, death. Our own unique Death Story informs whether we perceive death as a tragedy or a relief; what we consider as a ‘good’ death; what we consider is the ‘right’ age to die; how we ‘should’ prepare for death; and our beliefs about what happens after we die.
For residential aged care workers who work in the presence of death, Death Stories can help make sense of their own and others’ mortality and create a framework to understand their belief system and values around death and dying. Our unique Death Stories are formed throughout our lives in relationship with our environment, developed through our exposure to beliefs within our family of origin; our culture; our ethnicity; religion and spiritual contexts; exposure to death on TV, movies and video games; and experiences of the death of family and friends and the meanings we have assigned to these deaths. Our Death Stories serve as a lens, a way in which we look at dying, and how we respond and behave in the presence of death. Aged care workers commence work with existing Death Stories and these dynamic narratives evolve in complex and unique ways. Each day, workers face their own mortality, the death of loved residents, as well as peer and organisational narratives. Using a metaphor, in the context of residential aged care, our Death Stories act as a kind of backpack we carry with us into every occasion of care and ultimately influence how present we are able to be with people as they die. For some, their Death Story backpack sits lightly and feels comfortable as it holds wisdom from experience that positively contributes to death care. For others, their Death Story contains confronting experiences of death that make the metaphorical backpack heavy, creating a distraction when caring for people who are dying.
The narratives and belief systems we have around death are often unconscious, leaving us potentially unaware of the nuances of our belief system and how this may inform our thought processes and behaviour in the presence of death. Australia’s medicalised, and at times hidden approach, to death may lead to a lack of open conversations about dying, leaving us little opportunity to explore our own framework and meaning-making around death and dying. I was curious in the study to explore how these unexamined Death Stories impact on workers, particularly in the early years of their career in aged care when workers are likely to encounter many firsts in the everyday provision of care. The first time a loved resident dies, the first time a worker has the responsibility of caring for a person who was dying, the first time a worker sees a dead body, and the first time a worker provides post-mortem care can be potentially challenging for new workers. These situations are meaning laden life events, ones that may not be anticipated at the start of work within aged care and ones that can trigger previously unexamined meaning-makings and unexpected responses to death.
Each year in Australia approximately 60,000 people die in residential aged care, making up around 1/3 of all deaths of those over 65 years of age (1;2). Whilst 60,000 per year can seem like an overwhelming, perhaps impersonal number, each singular unit of that figure represents a person who is experiencing one of the most meaningful times of their life, their death. Each unit is a person who has formed relationships and meaningful connections with others throughout their life and connections with those who have cared for them in aged care. Of these 60,000 people who have died, some will be cared for by workers who are participating in caring for a dying person for the first time, seeing a dead body for the first time, or grieving a resident whose connection was particularly meaningful, adding to each workers Death Story and filling their metaphorical backpack.
With the Royal Commission into Aged Care Quality and Safety promoting discussion on how we approach quality-of-life in aged care perhaps how we approach and ensure quality of death requires greater consideration. Initiatives such as Advance Care Planning and growing societal and personal expectations that people die in a way that is meaningful and unique to them have commenced this discussion. Perhaps reflection on each worker’s Death Story can provide insight into the quality provision of end-of-life care as well as providing a key to promoting a sustainable and retained workforce so workers, particularly new workers, can be better supported as they explore their own relationship with death.
Acknowledgement: This article represents preliminary results from her PhD research and Liana feels much gratitude to the Residential Aged Care Facilities and the individual workers who have participated in the study.
Liana Green is a Social Worker with a clinical background in palliative care, oncology, ageing and clinical education. She is in the final year of her PhD candidature at the Research Centre for Generational Health and Ageing at the University of Newcastle, Australia, and is supervised in her PhD by Dr Meredith Tavener and Professor Julie Byles. Liana can be contacted via email at Liana.Green@uon.edu.au
- Palliative Care Australia, Royal Commission needs to investigate quality of palliative care in aged care, in Palliative Care Australia Terms of Reference for the Royal Commission into Ageing service and safety. 2018. p. 1-2.
- Broad, J.B., et al., Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics.[Erratum appears in Int J Public Health. Int J Public Health. 2013 Apr;58(2):327]. International Journal of Public Health, 2013. 58(2): p. 257-67