So why aren’t we more open? When asked, most people have clear preferences for the care they want at the end of their life. But rarely do we have open, systematic conversations that lead to effective end-of-life care plans. A 2014 report by The Grattan Institute found that 70 per cent of people in Australia want to die at home yet only about 14 per cent do so. That’s less than half the rate in other comparable countries like France, New Zealand and the United States, where about 30% of people over 65 die in their own home.
Increasingly, people are dying at an older age. They are also more likely than their forebears to know that they are going to die in the relatively near future. But we aren’t taking the opportunity to help people plan to die well. Towards the end of life, many experience a disconnected, confusing and distressing array of services, interventions and relationships with health professionals. Many do not get enough palliative care. Often, this is because people haven’t discussed the support they would like as they die.
In Australia, dying has become institutionalised. Horsfeld et al, stated that “The concept of a good death has been superseded by the concept of a managed death, one that requires professional support and knowledge … and takes place in a hospital, or more rarely a hospice, resulting in modern death becoming cellular, private, curtained, individualised and obscured.”
So what is a ‘good’ death?
Of course, this is a highly personal concept that will vary between individuals, but there are some commonalties to be found when people are asked this question:
- To know when death is coming and to understand what can be expected
- To be able to retain control of what happens
- To be afforded dignity and privacy
- To have control over pain relief and other symptom control
- To have choice and control over where death occurs (at home or elsewhere)
- To have access to information and expertise of whatever kind is necessary
- To have access to any spiritual or emotional support required
- To have access to hospice care in any location including home, not only in hospital
- To have control over who is present and who shares the end
- To be able to issue advance directives that ensure wishes are respected
- To have time to say goodbye, and control over other aspects of timing
- To be able to leave when it is time to go and not to have life prolonged pointlessly
We would encourage everyone to have these important discussions with their loved ones and access the wealth of information available on this topic (The Palliative Care Australia website is a great place to start). When the time comes, knowing their wishes will give you the confidence to make the appropriate decisions and peace of mind that you’ve done the right thing.
The Italian writer, Umberto Eco, said it was “necessary to meditate early, and often, on the art of dying to succeed later in doing it properly just once.” Wise words indeed.