SCIENTIFIC discoveries and advances in modern medicine mean that today we are less likely to die suddenly from common ailments that might have killed our predecessors, but more likely to die slowly from chronic conditions such as cancer, organ failure and dementia.
Right now, more than 110,000 Australians need assistance at the end of their lives, challenging the capacity of our healthcare system to manage them.
Australia’s ageing population and changes in the patterns of disease are leading to massive growth in the numbers of people requiring care towards the end of their lives, often when they have lost the capacity to decide for themselves what that care might include.
“Quality of death” is a controversial topic for many people.
While medicine and science have eliminated many diseases and prolonged our life expectancy, death is eventually inevitable for us all.
As we seek to manage the quality of the end of our lives, we should all have an interest in building a system that preserves our dignity and ensures that our last days reflect our personal preferences.
It makes good sense to plan for impending birth. It increases the chance of good health while reducing fear and stress. Planning helps the family to develop a shared sense of responsibilities and values. There is a growing school of thought that suggests we could start accepting that chronic illness and end-of-life occur and plan for them in the way we currently plan for the start of life.
What lessons could we derive from childbirth and parenting classes?
There are calls to support the development of a national plan for the preparation of people and family caregivers when they are “expecting” to approach the other end-of-life’s continuum, comparing end-of-life to childbirth.
Planning can make a crucial difference to the “quality of death”.
People who receive end-of-life care consistent with their own preferences are said to experience higher quality of life, and lower physical and psychological distress.
However, because of lack of advance planning, patient preferences often aren’t clearly communicated to providers and family members who become surrogate decision makers.
Providers then have to rely on the perceptions and personal views of the surrogates rather than the patients themselves.
This is a complex moral situation and the complexity is, in part, derived from the spectrum of how well the surrogate’s views align with the patient’s preferences.
Up to 10per cent of our national healthcare resources are spent on procedures that patients at the end of their lives may not want.
The University of Newcastle has been granted almost half a million dollars from the National Health and Medical Research Council and the Cancer Council NSW to investigate patients’ actual preferences in relation to end-of-life care.
The research study, entitled Who decides and at what cost, will involve a multidisciplinary research team looking at the complex blend of clinical, legal, behavioural, bioethics, health economics, biostatistics and information technology issues that impact on this important issue.
The consideration of advance care directives is an important but sensitive and often difficult matter in healthcare.
The research will consider the important issue of effective decision making by cancer patients, their families or surrogates, and oncologists.
The research will also address community concerns about the care of terminal cancer patients who may be offered more therapy during end-of-life care than they might want if their views were sought.
This will be the first study 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.
This information will inform strategies to improve awareness of end-of-life care options and advance care planning within the community. As more and more Australians look forward to a longer life and, potentially, an extended end-of-life, research into patient choice and planning is critical to helping the community make important decisions about who decides, and at what cost.
Laureate Professor Robert Sanson-Fisher is director of the University of Newcastle Centre for Health Behaviour, and co-leader of the HMRI Public Health Program.