$3.38m for dementia research

Laureate Professor Rob Sanson-Fisher will lead a multi-disciplinary team in dementia research with $3.38 million in federal funding, just announced.

The project titled 'Australian Community Of practice in Research in Dementia' (ACcORD) was one of six Dementia Research Team Grants worth $35.6 million just announced by the National Health and Medical Research Council (NHMRC).

ACcORD will explore barriers to service delivery, evaluate the current legal impediments and look at implementing new measures for consistently assessing unmet needs. Clinicians, biostatisticians, health economists, legal experts and consumer representatives will take part, some of whom have previously worked outside the field.

Director of the University of Newcastle's internationally recognised Centre for Health Behaviour and co-leader of HMRI's Public Health Program, Professor Sanson-Fisher has more than 35 years' experience leading ground-breaking research projects in this field. 

In a time fraught with high emotions and where crucial decisions need to be made, Professor Sanson-Fisher's research is setting the global benchmark for clinical practice guidelines and training for doctors to help reduce the emotional impact of terminal illnesses on patients and their families.

This includes spearheading a research project that analyses international approaches and cultural differences to end-of-life care, a study identifying communication and perception gaps between doctors, patients and families, as well as developing an internet-based system that keeps patients, families and caregivers on the same page.

"The nature of terminal illnesses, like cancer or cardiovascular disease, is that many people do not want to have the discussion about death, because there is fear that voicing this discussion is like jinxing or giving up, and will only increase stress on the patient," Professor Sanson-Fisher said.

"In actual fact, research shows that planning for death helps ease depression and anxiety. People who receive end-of-life care consistent with preferences are said to experience higher quality of life and lower physical and psychological distress," he said.

"Our research delves into the many areas of decision making that emerge towards the end-of-life, from treatment choices to legal parameters on who makes the decisions to quality of life preferences such as where and how you would like to be housed and who you would like to look after you.

"However, patient preferences often aren't clearly communicated to doctors and families, who become surrogate decision-makers. Providers then have to rely on the perceptions and personal views of family members rather than the patients themselves, at a time when the family members are incredibly stressed.

"There is increasing evidence to show that terminal cancer patients are receiving more treatments at the end-of-life than they might want if their views were sought. Planning helps reduce fear and stress, and helps everyone develop a shared understanding and sense of responsibility and values."

It is Professor Sanson-Fisher's aim to reshape thinking surrounding dying, so that preparations are as thorough for end-of-life as the other end of the spectrum – childbirth.

"With ageing population expected to increase, it is paramount that we begin to view preparation for end-of-life as a process as important as preparing for the birth of a baby. Improving end-of-life preparation has implications across many different sectors and industries, from government to legal to psychological, medical and aged care."

Professor Sanson-Fisher's Consensus Guidelines for Medical Practitioners on breaking bad news originally set the international benchmark for helping patients, families and doctors through the delicate and often heartbreaking discussion of how they would like their final days to play out.

An inaugural Director of the National Cancer Control Institute and New South Wales Cancer Education Research Program, Professor Sanson-Fisher has published more than 400 peer reviewed research papers on improving public health outcomes in the areas of behavioural science, cancer control and Indigenous health. This service was recognised when he was awarded the Officer of the Order of Australia for his work.

The Centre for Health Behaviour and the multidisciplinary research team for the Who Decides and at What Cost study brings a unique blend of clinical, legal, behavioural, bioethics, health economics, information technology and biostatistics expertise.

The study builds on the Centre's extensive experience and successes, and uses new research methodologies such as video, films and live scenarios to explore reactions and educate practitioners.

The Who Decides and at What Cost Study will be the first in the world to provide clinically relevant data on the degree to which providers and surrogate decision makers accurately reflect cancer patients' end-of-life decisions over time.

The study will also try to address evidence-based practice gap, which shows what clinicians should be doing and identifying where they are not meeting best practice and why they are not.

Professor Sanson-Fisher is also working on a study that analyses and compares approaches to end-of-life care in Australia, Japan, Vietnam and Korea.

"One of the interesting early indications from the initial international findings is that there appears to be universal consistencies surrounding discussions on dying," Professor Sanson-Fisher said.

"You would expect there to be variations between Japan, which is perceived as being a hierarchical society, compared to Vietnam which is considered a socialist society, versus Australia, a traditional family-dominated medical environment, where questioning medical practice is considered more common. However, there isn't much difference".

"Surprisingly however, advanced directives are much more common in Japan than they are here in Australia. So we are looking at research into why that might be and whether or not patients in Australia would like to have advanced directives.

Studies by Sanson-Fisher have indicated that patients with advanced, incurable cancer have high levels of unmet needs, especially in relation to the areas of psychological and medical communication and information.

Professor Sanson-Fisher believes that these unmet needs are largely driven by a gap between clinicians' expectations and a patient's expectations.

"An oncologist might tell a patient that a certain treatment might 'work'. The patient will interpret that as meaning the treatment will extend their life by years, but the oncologist actually means extending their life by three months," says Professor Sanson-Fisher.

Perception plays a key role, according to Professor Sanson-Fisher, who believes it is not so much about what is in the plan – but in the interpretation of what the patient would want. 

"Doctors often talk about 'good' cancers, but most people think there are no good cancers to have. Oncologists deal with horrible situations every day and for patients this might be their first encounter with cancer.

"Their perceptions are completely different because they live in different worlds, but it's essential that we bridge this communication and perception gap for all parties' sake.

The timing of when to have the discussions is also being investigated, with Sanson-Fisher and his team developing frameworks that will assist caregivers to recognise the point at which psychosocial and emotional responses to patients' needs require specialist intervention.

"We're also researching when and how patient's advanced directives and patient preferences change over time. I have certainly seen patients say I don't want treatment when they are not a patient and then when they are a patient they say 'give me everything you've got'."

Sanson-Fisher and his team are currently trialling an internet-based research system to bridge this gap for leukaemia patients.

"Leukaemia and its treatment is a complex area. Blood cancers are much harder to understand and the decisions about what treatment plan to follow are therefore much harder.

"The internet-based information system outlines what treatment they are using, what the decisions and consequences are and what they can do to manage it.

"The site gives leukaemia patients, their families, their support team and their health team access to a central site any time they like to help everyone feel as though they are on the same page."

With 7.6 million people dying from cancer worldwide every year alone, Professor Sanson-Fisher is leading the way in helping the last goodbye become an easier one.

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.