New study asks: what should end of life look like?
Your mum is elderly, growing frailer and staring down a disease from which death is inescapable.
How does she want to live her life? What are her wishes for making her days the best they can possibly be? Does she want to avoid treatments that might do nothing but worsen her pain and suffering?
These are among the questions at the heart of a new research project examining community attitudes and preferences for care at the end of life.
Distinguished Professor Jane Hall, from the Centre for Health Economics Research and Evaluation at the University of Technology Sydney, will lead the project, which is funded by the National Health and Medical Research Council.
"This research focuses on the very important topic of care and quality of life at the end of our life. It will help ensure that health care services provide the best support for patients and their families," says Professor Hall.
“For people who are at advanced ages and have the sort of diseases where death is inevitable as a consequence of the disease, how do they want to live their lives? What will make quality of life the best possible for them?” she says.
People’s preferences for health care and treatment when they are younger, for example surgery or intensive chemotherapy for cancer, are very different from the choices they might make at the end of their lives, particularly if they are frail with multiple health conditions.
However, the current health system does not always recognise these preferences, and interventions to prolong life can instead cause additional grief to patients and families, and impose significant extra costs to the health system without improvements for patients.
“There are an increasing numbers of treatments that in some scenarios may come with some difficult and challenging side effects to live with. They come at great expense and sometimes only a very small chance of increasing longevity,” says Professor Hall.
“We know that a lot of health care costs are incurred in the last 12 months of life and particularly in the last three months. But the question is, are we delivering the best care or the most appropriate type of care to people in those final stages of life,” she says.
“While we might prefer to remain at home with supportive and palliative care, the reality is that we are much more likely to die in hospital than at home.”
The project will survey mid aged and older people in the community who are facing these types of decisions with elderly parents and other family members. It will attempt to quantify preferences based on different scenarios.
“We hope that the findings will contribute to the public debate on end of life care, and to the education and awareness of health care professionals in dealing with services,” says Professor Hall.
“The bottom line is that if we are spending a lot of money on end of life care but we are not delivering the best deal for the patients, we should be changing.”