Why My Care Matters: improving death literacy in aged care
A blog post by Professor Jennifer Tieman, Flinders University Lead at ELDAC
Australians are often uncomfortable talking about death. We like to think there is no good time to mention it. By talking about death ‘too early’ we risk upsetting people, but we are also afraid to talk about it ‘too late’ at the risk of being impolite. Sometimes we like to think that by not talking about death, we are doing a favour to the people around us, even when those people around us are very unwell or are obviously approaching the end of life.
Aged care workers who are caring for older people at the end of life are often familiar with death, but just like most Australians, they can also feel uncomfortable talking about it. In some ways this is unsurprising, given most qualifications required to be an aged care worker do not have a compulsory module covering palliative care or end of life care, and as such, the first time an aged care worker might come across these important skills is on the job, where they might also be confronted with caring for a person who is dying for the first time.
About 80% of Australians use an aged care program at some stage before their death, and more than a third of all Australian deaths will take place in residential aged care, making aged care inevitably involved in both end of life care and palliative care. While palliative care is just starting to be acknowledged as a core part of aged care, workers in the sector have been providing palliative care and caring for older people through to the end of life and into the bereavement phase throughout their careers. Despite this, many aged care workers, just like many Australians, are often uncomfortable talking about death with the people they care for, and this reluctance is often a barrier to providing quality care, particularly person-centred end of life or palliative care that is based on the older person’s wishes.
My Care Matters is a national campaign designed and developed by ELDAC to improve death literacy and death awareness in the aged care sector, primarily amongst aged care staff working in residential aged care and home care. The campaign includes a series of new resources that take a story-driven approach for aged care workers, gently introducing them to examples of end of life care and palliative care that they might already be familiar with through their work. These resources can be used by individual aged care workers or shared in a workplace to support aged care workers to feel more comfortable talking about death and dying with their colleagues, the people they care for and their families.
The campaign uses a combination of fictional and real-life stories from aged care sites around Australia and over the following year will cover topics including the normality of death, palliative care in aged care, using evidence and learning from others, recognising diversity, and caring for yourself as an aged care worker. It is intended to acknowledge aged care workers for the work they are already doing, and to show the importance of caring for themselves to protect against the impact that caring for people who are dying can have.
The campaign will take a staged approach to releasing new resources, starting with the ‘Part of Life’ campaign that aims to help aged care workers to think about death as a normal part of life, and to grow their familiarity and comfort in addressing the topic in their workplace and with the people they care for. Many aged care workers are already comfortable talking about end of life with the people they care for and acknowledge that doing so can help the person receiving care to feel they have some control over the decisions made about their care as they reach the end of life.
There are also opportunities to get involved in the campaign by sharing your thoughts about end of life in our online survey, signing up for campaign updates, or becoming a Campaign Champion to share campaign resources with your workplace. We are all advocates of good quality palliative care, and My Care Matters gives aged care workers an opportunity to share how their work in caring for older people at the end of life is critical to the older people they care for, their families, and the community.
You can find out more about My Care Matters on the ELDAC website where you can also learn more about the Part of Life promotion including our free resources.
Professor Jennifer Tieman, Flinders University and Technology and Innovation Lead at ELDAC