Opinion: Supporting a death-literate Australia

If more Australians are to spend their last weeks and days at home, with care provided by an informal carer, our society will need to improve its ‘death literacy.’

Most of us will at some point in our lives will provide support and care for someone who is coming to the end of their life as part of ageing or as a result of disease or illness, writes Professor Jennifer Tieman.

Jennifer Tieman

People who are seriously ill or dying often say they wish to be cared for and die at home with the people they love and in familiar surroundings. Remaining at home is made much more likely where there is someone, or a group of people, who is willing to provide care and support for the dying person. Family, friends, work colleagues and neighbours all have taken on a caring role.  

This approach makes socio-economic sense too. There is a growing awareness of the impacts of ageing and dying on the health system and aged care industry as well as on individuals, communities and society. In 2014, the World Health Assembly passed a resolution calling for member states to strengthen palliative care as a component of comprehensive care across the life course.

But where there is a will there needs to be a way and in this sense it means that if more Australians are to spend their last weeks and days at home, with care provided by an informal carer, our society will need to improve its ‘death literacy.’   Over the past decade or so, there has been a many different initiatives to build awareness and develop societal skills, knowledge and capacity upskill society accordingly and long may this continue. 

We have learned that good communication, planning and knowledge are all critical to enable carers to provide care but carers also need to receive emotional and physical support to be able to continue caring. Carers have highlighted that they need three types of support: instrumental (practical assistance), emotional (relieving the care burden and allowing family carers to maintain own activities) and information (frequent information about prognosis and expected complications).  

A new web resource

To this end, a new web resource has been established to empower informal (family) carers. CarerHelp is an initiative led by St Vincent’s Hospital Melbourne’s Centre for Palliative Care in partnership with Flinders University’s CareSearch, University of Technology Sydney and Carers Australia, the peak body for unpaid carers in Australia.  

For the first time, family carers have access to a comprehensive and dedicated online resource covering all aspects involved in caring for a terminally-ill parent, partner or friend so that they are as prepared as possible and can reflect on their experience and contribution as rewarding and important. 

CarerHelp is a web portal offering an extensive range of advice and support for Australians  who have taken on the role of caring for a terminally-ill parent, partner or friend.   It addresses the information needs that carers have advised are important when someone is coming to the end of their life – what to expect as a terminal illness progresses, the practical aspects of caring, how to access community services and the obligatory legal and financial considerations involved in caring, dying and funerals.

The information is available through a library of videos and downloadable information in article, factsheet and checklist format for family carers. It was developed in conjunction with a large group of family carers and community organisations who shared their knowledge and experiences with the project team.  

The website includes a page called Carer Voice which hosts a series of videos featuring carers who reflect on their own real-life experiences, offering insight into all parts of the carer experience from deciding whether you are the right person to provide care, to how to cope with grief and loss. 

Caring for someone can involve medication management, financial and legal issues, system management and general care and support and the CarerHelp website covers all these bases.

CarerHelp was built by the Australian Family Carer Toolkit Project and was funded by the Australian Government Department of Health.

*Professor Jennifer Tieman Director of the Research Centre in Palliative Care, Death and Dying at Flinders University and Director and Chief Investigator of the CareSearch project 

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