‘Most people actually want to die at home, not in a hospital or institution’

Dr Kenneth Hillman is Professor of Intensive Care, School of Clinical Medicine, University of New South Wales, Sydney. His TED talk in 2016 about death and dying racked up millions of views. It gets shared even now by people who come to terms with end-of-life questions. His book, ‘A Good Life to the End: Taking control of our inevitable journey through ageing and death’, takes this talk forward.In this interview with R Edwin Sudhir, he talks about the issues and possible solutions.
Are people more ready than before for end-of-life conversations?
This is a difficult question to answer. I’m closely involved in this area and, as such, meet and interact with people who spend time thinking and discussing the issue. I wouldn’t presume that this represents society as a whole. However, I do think there is more awareness about it in the media now and people are beginning to discuss it more openly. There are also variations between people of different countries about end-of-life issues according to religious, historical and cultural beliefs.
Are doctors now better trained to handle questions of patients and caregivers about end-of-life issues?
Certainly not in Australia. There is some teaching about Palliative Care as a medical specialty who work mainly with patients who have cancer but not with the elderly frail. Most of the needs of this group are not medical, emphasising support such as loneliness, home care, shopping and personal assistance. The medical curriculum emphasises curing and treating disease with conventional medicine. These clinicians are the role models, not those who care about end of life.
There is now a growing movement for Shared Decision Making (SDM), an attempt to determine the attitudes and beliefs of a person (i.e. who they are) and then translating those into genuine goals of care. This is different from the current Advance Care Directives which is a form stating things such as CPR which the person may or may not want.
SDM is an attempt to establish genuine equality in the relationship between patient and doctor so that the choices people make are a genuine reflection of the person. By empowering people, this may overcome the fact that doctors are not well equipped to discuss end-of-life issues.
What can governments do for terminally ill patients in terms of care homes and medical facilities?
It costs $5,000/day to support someone at the end of life in my Intensive Care Unit. There is a move internationally to provide excellent end-of-life care and support in the home. As well as a cost advantage, most people actually want to die at home, not in a hospital or institution. If governments could facilitate these choices by funding home support, it would be a great step forward in aligning care with patient wishes.
How can the private healthcare sector care for the terminally ill?
This depends on the nature of a country’s health system. In public systems, ideally care could be provided by the state without an increase in costs. In fact, it would save funding. Providing care through the private system means only the wealthy will be able to afford it.
The cost of caring for terminally ill patients can often be daunting. How can this be reduced?
Currently, there is a kind of conveyor belt, especially for the elderly who are dying. They become frailer as a normal part of ageing. Then, they are prone to sudden life-threatening events such as falls or infection. The ambulance is called; assessment in the emergency department; admission to hospital and finally, to the Intensive Care Unit.
The current data enables us to predict patients who are likely to die within 12 months. They are terminally ill and equipped with SDM, they can make rational decisions about what level of care they would prefer in view of their terminally ill state. In a private system, they would be responsible for escalation in care. A public system would mean everyone would share the costs. Either way, delivering futile care at the end of life is neither a sound economic decision nor is it consistent with the majority of people’s wishes in view of their prognosis.
Are we as a society ready for euthanasia? What are the main hurdles to making it more acceptable?
Many countries, including Australia, have now passed legislation enabling euthanasia under very strict conditions. The major hurdles are to overcome the inherent fear by society of the system being abused and becoming like the beginning of a eugenics movement. Nevertheless, governments have been convinced to pass legislation as a result of active public pressure.