Starting the end-of-life conversation

Jan 23 2018

Dr Amy Waller

The majority of Australian cancer patients nearing the end of their life would prefer to do so in the location of their choice, however new research shows only 7% of patients are having this key conversation with their doctor.

Led by Dr Amy Waller from the University of Newcastle’s (UON) Priority Research Centre for Health Behaviour, the study surveyed oncology outpatients on their preferences for end of life (EOL) care to better understand patient choices and inform future care models.

“Discussions around end of life care are sensitive but should be of paramount importance as they ensure patients’ choices are expressed and understood by their family and healthcare team, and that patients and families know what to expect and have appropriate support during such an emotional time.

“Around 93% of patients we surveyed emphasised the significance of being able to die where they choose. Despite preferring to be at home or in a hospice facility, studies show patients are more likely to spend their final days in a hospital environment,” Dr Waller said.

Based at the HMRI Building as a member of HMRI'S Public Health Research Program, Dr Waller and a team found more patients had discussed EOL preferences with their support person than their doctor, however the majority indicated they would like their doctor to ask about preferred location of care.

“What this tells us is that there need to be better processes in place to ensure these conversations are happening between patient and doctor in a timely and sensitive way.”

Overall, 47% of patients indicated a preference to be cared for either in their own home or the home of a relative, 34% indicated a preference to be cared for in a hospice or palliative care and 19% in hospital.

People’s choices were often influenced by the perceived impact on the family, likelihood of having wishes respected, or access to expert medical care.

“Supporting people’s wish to die at home instead of at a hospital may reduce costs to the system, however this may come at a significant personal cost to the patient and family, who aren’t always prepared and capable of managing such complex needs.

“It also means that those without informal carers might need support from community palliative care services, and currently there are not enough to go around,” Dr Waller said.

The researchers hope their work will contribute to future discussion around the importance of EOL care, and inform care process to ensure the needs of patients are met.

“By giving patients an opportunity to articulate their choices to key individuals early, we can better ensure a personalised and more comfortable transition at the end of their life.”