Researchers to study compliance with end of life decisions

The University of Newcastle has been granted half a million dollars from the National Health and Medical Research Council and the Cancer Council NSW to investigate adherence to patients’ preferences in end of life care.

Laureate Professor Robert Sanson-Fisher, University of Newcastle

The University of Newcastle has been granted half a million dollars from the National Health and Medical Research Council and the Cancer Council NSW to investigate adherence to patients’ preferences in end of life care.

Laureate Professor Robert Sanson-Fisher, Director of the University’s Centre for Health Behaviour and co-leader of Hunter Medical Research Institute’s Public Health program, will lead the research study titled ‘Who decides and at what cost’. 

The project, which brings together a multidisciplinary team of researchers from the areas of health, law, bioethics, health economics and biostatistics, will study the degree to which health providers and other decision-makers accurately reflect patients’ end of life wishes.

In particular, the research will address community concerns about the care of terminal cancer patients who may be offered more therapy at the end of life than they might want if their views were sought.

“People who receive end of life care consistent with preferences are said to experience higher quality of life, and lower physical and psychological distress,” Professor Sanson-Fisher said.

“However, patient preferences often aren’t clearly communicated to health providers and families, who become surrogate decision-makers. Health providers then have to rely on the perceptions and personal views of the surrogates rather than the patients themselves,” he said.

Prof Sanson-Fisher said the research would consider the important issue of effective decision-making by cancer patients, their families, or surrogates, and oncologists. 

“There are many critical decisions to be made, yet many people are unable to make some or all decisions as they approach the end of their lives.

“Planning can make a crucial difference. Some people will experience serious illness in the form of acute emergencies. However, it’s more common for serious illness to come in the form of a set of chronic and progressively disabling conditions,” he said. “What if we started by accepting that illness and end-of-life occur?” 

Prof Sanson-Fisher said just as families carefully prepare for the birth of a child, so too should the community plan for end of life.

The study’s results will inform strategies to improve awareness of end of life care options and advance care planning within the community.  

Earlier this year, a study conducted by Associate Professor of sociology Alex Broom from the University of Queensland, reported that the desire of doctors and their patients to maintain hope may sometimes cause harsh life-prolonging treatments to be pursued, when best practice would be to focus on palliative care.

A/Prof Broom and his team, said doctors found it very emotionally challenging to discuss stopping life-prolonging treatment with their patients and families, especially very young children and felt a moral imperative to try anything in terms of treatments.

This finding is very significant considering that recent evidence shows that earlier referral to palliative care can extend life expectancy for some patients.

A/Prof Broom said a key reason for the delay was that many doctors were more comfortable as ‘diseases-beaters’ than as bearers of bad news. The results of Broom’s study were published in the journal, Social Science and Medicine.

Tags: acd, cancer, end of life, robert-sanson-fisher, university-of-newcastle,

1 thought on “Researchers to study compliance with end of life decisions

  1. It is a fact that most families do not discuss end of life care issues until the very last minute if not when the individual has already lost mental capacity. Yet it is the same family members who become surrogate decision makers. The inconsistencies regarding states legislation in Australia is a major drawback and harmonisation of the laws at national level is required. This needs to be supported by an approach to training of members to advocate for completion and use of advance care directives. There have been enough words regarding advance care directives and its now time for action.

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