The research team at Flinders University’s new Research Centre for Palliative Care, Death and Dying led by Professor Jennifer Tieman (far left)

It is time we were all a lot more ageing and death literate, writes Rosie Bonnin.

Flinders University has launched the Research Centre for Palliative Care, Death and Dying in the lead up to this week’s Australia’s National Palliative Care Week. This year’s palliative care week theme for is ‘What Matters Most?’ and it addresses the need for us all to plan ahead for the end of our life and discuss our choices and what matters to us with our loved ones and health care professionals.

We are all unique in our own way, but we do have one thing in common: every one of us has a beginning and an end stage of life. Birth and death are a normal part of life, yet it seems we are much happier talking about birth than we are about death and dying. It is not surprising as over the past 100 years death has become much more medicalised and people have less experience of dying and death in the community.

Rosie Bonnin

In the past people expected to die naturally at home and all ages had everyday experiences of dying, death and bereavement. In Australia, the proportion of older people is increasing rapidly and in the next 25 years the number of deaths per year is expected to double.

Few of us like to think too much about the end of our lives however death is a part of life and perhaps it is now time we were all a lot more ageing and death literate and started talking more openly about the issues that we all will face.

Talking about death, dying, loss and bereavement and what people would want for the end stage of their life can be challenging as researchers at Flinders University’s CareSearch have found.

CareSearch is the major online source of end-of-life and palliative care evidence in Australia. Over the past 10 years, they have provided reliable online evidence-based information, tools and resources for health professionals and patients, carers and families as well as establishing the palliAGED online guidance and resources for the aged care sector.

The CareSearch team has long recognised the taboos around death and dying and the need to encourage more open discussions and improve death literacy in our community. Their Dying2Learn initiative conducted from 2015-2018 provided an environment that enabled open discussions around death and dying emphasising death is a normal part of life. They discovered that people were actually ready and keen to discuss these important issues.

Over 3,000 people participated in the free online MOOC (Massive Open Online Course) sharing their thoughts and learnings about all things ageing, caring, death and dying and bereavement. Participants actively shared their life experiences and ideas as well as the books, films, songs, videos and resources that have helped them learn and talk about death and dying.

The Research Centre for Palliative Care, Death and Dying will be led by Professor Jennifer Tieman, Mathew Flinders Fellow and CareSearch director. The centre will examine the issues of death and dying across the life course, across the community and across the health system.

At the opening of the centre, Professor Tieman said:

“With ageing and increasing chronic disease burdens, care for people who are coming to the end of their life will impact the whole health and social care system. We need to better understand how to recognise and address the needs of individuals, families, communities, health professionals and the health system as they face the reality of dying.

“Our research centre will explore the universal experience of death and dying and champion the contribution of palliative care to the person, the health professional and the health system.”

Flinders University’s new research centre agenda and the CareSearch and palliAGED teams will actively continue to promote and support high quality end-of-life and palliative care initiatives locally, nationally and internationally.

More information and resources on death, dying, loss and bereavement are available on the CareSearch and palliAGED websites. All information is free and available around the clock for everyone in the community to help us have the conversations that matter and support those living with a life limiting illness have quality of life to the end of their life.

For more information and access to resources, visit the research Centre for Palliative Care, Death and DyingCareSearch and palliAGED.

Rosie Bonnin is a research associate with CareSearch and palliAGED at Flinders University.

National Palliative Care Week runs from 19-25 May.

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