Dr Craig Sinclair from the School of Psychology at UNSW Science has been awarded $956,000 from the National Health and Medical Research Centre (NHMRC) for a project that will investigate ways to improve advance care planning.

“It’s important to understand and respect peoples’ wishes at the end of their lives,” Dr Sinclair said.

“Conversations about end of life are sometimes considered ‘morbid’ or associated with ‘giving up’. We need to focus on trying to normalise these discussions and ensure that people are aware of their rights and have some say in their future health care treatment before they may be unable to speak for themselves.” 

The project will make recommendations on how people can become more knowledgeable on treatments available and feel comfortable having conversations about end of life planning with family and carers. It will also address how health practitioners can communicate end of life planning with culturally and linguistically diverse groups.

Dr Sinclair said the project aims to make advance care planning more accessible for older adults by working closely with community aged care providers, who provide care within the Commonwealth home care packages scheme.

Discussions with family

Dr Sinclair believes more needs to be done to assist people in discussing planning for end of life with their family.

“Sometimes people are keen to be able to make their wishes known and stay in control of their care but uncertainty about their own health conditions, struggles in getting clear information or fear of upsetting their families by ‘talking about dying’ make it difficult.” 

Research undertaken by the project will investigate the best way to position a person developing a plan as the expert, supplemented by advice from health professionals.

Dr Sinclair said that planning in this way not only provides people with confidence in having conversations with their family but can also reduce the stress experienced by families as they are less likely to have to ‘guess’ what their loved one would or would not want.

The project will also investigate ways to assist culturally and linguistically diverse groups facing additional barriers in accessing information to develop end of life plans.

Communicating plans with health professionals

The project will look at ways to communicate a person’s end of life wishes to health professionals and community aged care coordinators.

“There are currently gaps in the communication systems between hospitals and the aged care sector, making it difficult to know where an advance care directive should go, and for hospitals to even know if a patient has one,” Dr Sinclair said.

“We will work with closely with community aged care providers who provide care within the home care packages scheme to ensure that recommendations are translated into practice.”