A focus on end of life care

Public health researcher Dr Amy Waller works with local clinicians and patients to strategies to improve end of life care for people right around the globe.

Following her Bachelors degree in Psychology, Amy began working with the team at UON’s Centre for Health Research and Psycho-oncology (CHeRP, the Behavioural Research Unit of the Cancer Council NSW), with a focus on improving end-of-life care for people with cancer.

“Palliative Care Australia had released standards and guidelines suggesting they needed to improve the way people diagnosed with cancer were accessing palliative care.

“A lot of people who would have benefited were getting referred too late, and some were not getting referred at all.”

The team wanted to find a way to integrate assessment of all aspects of patients’ quality of life into routine care.

“We were looking at ways to identify people who had unmet needs in the area of symptom management, but also information needs, social needs and financial and legal aid.”

Amy had been working on the project for a year when she was offered the opportunity to integrate her work into a Behavioural Science PhD.

“I progressed with that program to the end point, where we actually implemented the resources and evaluated their effectiveness in oncology and palliative care services in the Hunter and Sydney region.

“From there the resources were disseminated across Australia.

“We still get requests from people to use the screening tool in different services. It’s been adapted to heart failure and there's also a group in the UK who have done some work in interstitial lung disease.”

Screening for Distress: an international opportunity

In 2010, Amy was awarded an international Post-Doctoral Fellowship with the University of Calgary, where she worked for two years on the Screening for Distress project, another national program designed to optimise care and services for people with cancer.

“We were working towards the idea of regularly assessing patient needs in the clinic and making sure their needs are being met by the right services at the right time.”

Facilitating talk around end of life care

Upon her return to Newcastle, Amy joined the University’s Priority Research Centre for Health Behaviour, where she worked alongside Laureate Professor Rob Sanson-Fisher in the continuation of her work in improvements of care for people with cancer facing the end of their life.

“We were focused on ways of facilitating appropriate end of life discussions – how can we get patients, families and health care providers to actually talk about these issues?”

Amy’s areas of interest diversified, as she began investigating these issues in older people, particularly those with progressive chronic diseases.

“There's sometimes hesitancy in talking about death and you do have some people who get uncomfortable and prefer not to talk about it.

“The vast majority of people tell us that they want their family involved in the decisions around their end of life care, which is great - if the family knows what the patient wants.

“The problem is people aren't always having these discussions.

“They may want to talk about it but they don't know how to bring it up. A lot of our work is providing information and some guidance to patients and families about how they can have these conversations.”

Educating health care providers, implementing change

Research has demonstrated that starting these discussions in a timely manner – rather than delaying them – leads to a less stressful and better informed experience.

“When these discussions only happen right at the end, and snap decisions have to be made without properly understanding the consequences, it can be traumatic.”

One key way to facilitate and encourage this ‘acceptance phase’ is to educate clinicians about best practice.

“We talk to doctors and nurses who have been treating patients for 30 years and they still say it’s the hardest conversation they'll ever have.

“So we’re looking at how we can best educate and implement ways to help health care professionals to have these conversations with patients and families.

“There needs to be consistency in how that happens, so that they feel confident and capable.”

Another means for intervention is via community aged care services.

“A number of older people in the community are already clients of these services.

“We’re working with providers to develop a program where they can go in and talk to their clients about these matters.

“Those discussions would happen in an ongoing manner, so plans get revisited every 6-12 months - sometimes people’s wants and needs change with time.

“We can then look at how that impacts on whether they get the care that they want and whether it improves their overall quality of life.”

Planting the seed

In 2015, Amy’s research attracted the prestigious Australian Research Council Discovery Early Career Research Award, enabling her to focus on the end of life care given to older people in the hospital environment.

“Around 52 per cent of Australians will die in hospital.

“We’re asking what the gaps are in the care that needs to be provided and what we can do to improve it.”

Amy and her team are visiting patients in hospital to conduct interviews around their awareness of care plans and whether they have engaged in end of life discussions with their families or clinicians. They’ll then use the data to develop new end of life care strategies.

“We’re just planting the seed and giving people the opportunity to have those discussions if they want to.

“We making sure that there's a bit of awareness in the community about this issue - so that when people come into hospital care, they're not trying to have the conversation at the last minute when they're already severely unwell.”

The University of Newcastle acknowledges the traditional custodians of the lands within our footprint areas: Awabakal, Darkinjung, Biripai, Worimi, Wonnarua, and Eora Nations. We also pay respect to the wisdom of our Elders past and present.