Dying is a subject most of us are reluctant to talk about – but would demystifying the process enable better care for the terminally ill?
What is happening to the brain when we are dying? How we can enhance function, mitigate losses and retain meaning?
Mary Potter Hospice has just held a symposium called The Dying Mind on the latest issues pertaining to palliative care.
Meera Agar – a professor of palliative medicine at the Sydney Institute of Technology – spoke at the symposium.
Read an edited snapshot of the conversation:
I suppose when people hear the words ‘palliative care’ they hear a death distance, but really it’s about living until you die.
The focus of palliative care is living well for the time that that person has, and that is living in the place where that person wishes to live – so keeping people at home, able to be with their loved ones is really critical.
These things to me sound like commonsense. Are they not done?
The hospital environments are often so focused on the medical care. And that’s not to say those things aren’t critically important. But these are some of the things that are seemingly so simple that sometimes they get forgotten.
Palliative care... people don't think about it a lot, do they? Dying is what happens to other people. Facing mortality is something that we put off. Do you think we need to start planning early or thinking about it a little earlier than we do?
I think, as a community there’s two parts to it. One is about the individual care that we may wish to have at that time. It’s about thinking what our values and wishes would be. And to regularly revisit that as our life circumstances change. But I think the other part of that is that we don’t have a community that’s willing to talk about these issues then the care of people who need palliative care is very isolated from the community.
And most people tell us that they want to be cared for in their home environment and spend as little time as possible in the hospital. Many express a wish to die at home. We need some passionate and co-ordinated communities who are willing to have those difficult conversations. People feel very isolated when they’re having that experience because they can’t talk with others, or they’re worried about what people might think or worried about upsetting people by having those conversations.
You led a ground-breaking trial – Australia’s first medicinal cannabis trial. And it focused on terminally ill cancer patients who had lost their appetite. Are those results out or is the trial still going?
The trial is just about to open. This trial is really the initial steps to understand some of the dose parameters. So we’ll be administering different doses of vaporised botanical cannabis and measuring appetite and some of the other related symptoms, such as hunger and taste. And measuring also the blood levels of the active compounds at the same time to try and get an understanding of how the active components in cannabis may mediate benefits in appetite… Loss of appetite is a very prevalent symptom [of cancer], yet we have very limited therapies to improve that. And the associated loss of weight is very distressing.