This paper recommends more public discussion, including an education campaign, about the limits of health care as death approaches and the need to focus on end-of-life care.
This report is about how, where and with whom we die. The baby boomers are growing old, and in the next 25 years the number of Australians who die each year will double. People want to die comfortably at home, supported by family and friends and effective services.
But dying in Australia is more institutionalised than in the rest of the world. Community and medical attitudes plus a lack of funds for formal community care mean that about half of Australians die in hospital, and about a third in residential care. Often they have impersonal, lingering and lonely deaths; many feel disempowered. Seventy per cent of people want to die at home, yet only about 14 per cent do so. People are twice as likely to die at home in countries such as New Zealand, the United States, Ireland and France.
Increasingly people die when they are old. They are also more likely than their forebears to know that they are going to die in the relatively near future. But we are not taking the opportunity to help people plan to die well. In the last year 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 do not discuss the support they would like as they die. 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 good death gives people dignity, choice and support to address their physical, personal, social and spiritual needs. This would happen more often with three reforms. First, we need more public discussion about the limits of health care as death approaches, and what we want for the end of life. Second, we need to plan better to ensure that our preferences for the end of life are met. Third, services for those dying of chronic illness need to focus less on institutional care and more on people’s wishes to die at home and in homelike settings.
For more people to die at home, investment in community-based support is needed. Doubling the number of people who are able to die at home will cost $237 million a year, but the same amount could be released from institutional care funding to pay for it.
Despite widespread assumptions about the cost of end-of-life care, only about $5 billion a year is spent on the last year of life for older people in a health budget of $100 billion. But only about $100 million is spent on helping people to die at home. A change in focus will not save much, but will help more people to die well.
The voluntary euthanasia debate often clouds this issue. But voluntary euthanasia and assisted suicide are rare, even in jurisdictions that permit them. Instead, this report is about ensuring that when death inevitably comes for each of us, we die comfortably, in surroundings we would choose. We need the courage to promote mature discussions about a topic that many dislike, but that we cannot avoid.