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I WALKED past an open doorway in the southern Italian village of Paestum some years ago.
It was early evening and, inside the room opening directly onto the street, a body lay on a table surrounded by flickering candles. Grieving relatives sat either side; neighbours came in and out, paying their respects.
It was a strangely beautiful scene — and a far cry from the way most of us in Australia experience death and grieving.
A century ago, people expected to die at home, surrounded by family and the material objects that had framed their lives.
These days, most Australians die in hospital, often spending the last days of their lives surrounded by various high-tech devices and subjected to possibly painful and often futile interventions.
It may seem surprising, but we actually don’t know a lot about exactly where Australians die, as Bureau of Statistics mortality data does not cover place of death.
The Australian Institute of Health and Welfare cites figures showing 52% of deaths in 2008‒2009 were in admitted patients, a figure that had remained more or less stable over the previous decade.
But others, such as Sydney intensivist Professor Ken Hillman, have put the rate much higher.
“Up to 70 per cent of people now die in acute hospitals; surrounded by well-meaning strangers, inflicting all that medicine has to offer; often resulting in a painful, distressing and degrading end to their life”, he writes in his book, Vital signs: stories from intensive care.
Although increasing recognition of the importance of palliative care has led to an easier path for many patients and their families, dying at home remains relatively rare.
Palliative Care Australia says only 16% of Australians die at home, despite it being most people’s preferred option.
The picture is quite different in the US, where moves to remove death and dying from the hospital setting have steadily gained momentum over recent decades.
In the early 1980s, Americans died in much the same way we do now — more than half of them in hospital and only 15% at home — according to medical historian Professor David J Rothman writing in the New England Journal of Medicine last week.
But that situation has changed. Professor Rothman cites a large cohort study suggesting more than a third of elderly Americans may now die at home, while fewer than 25% die in acute care hospitals.
Centers for Disease Control and Prevention figures from 2007 put the proportion of the overall US population dying at home slightly lower at 25%, but similarly chart a substantial increase over the previous two decades.
Part of the reason for the higher rate of home deaths in the US may be the extensive free services for those receiving palliative care at home (provided they are eligible for that country’s Medicare insurance scheme, that is).
Palliative Care Australia has been critical of private health insurers for their unwillingness to cover such services here.
The medical advances of the last century mean many of us will continue to die in hospital — and for good reason. Where a hospital admission offers a reasonable prospect of a good outcome, few of us would choose to turn our back on that, for all the accompanying risk that we might die in an institutional setting.
For those where a good outcome is less likely, though, the equation may be a very different one.
From either a financial or a compassionate point of view, it’s hard to understand why we would fail to support people who wish to die in familiar surroundings, and in the care of the people they love.
Jane McCredie is a Sydney-based science and medicine writer.
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AS a further comment , the other factor in the transfer of dying from home to hopsital has been the gradual demise of the family doctor and regular home visits. Relatives need the support of the family doctor in the case of a loved one dying at home. The doctor often has known the patient for years and can provide emotional and medical support, as well as helping with the legalities, death certificates etc. Palliative services may not always be able to fulfill this role.
We are victims of our own success. As Jan states..
Prior to WW2, most people died at home, usually from disease taking its natural course, TB, heart failure, chest infsetions, acute infectious disease. The family doc supervised a dignified death, in slow motion.
Come the advent of scientific medicine, then the ICU, the death scene shifted to hospital, and now people want to give high tech medicine a go, regardless of the risks/outcomes. In my experience, it’s unusual for a family or patient bringing someone seriously ill to hospital to ask for palliative care, though its often accepted when discussed sensitively
This requires a consultant to be present, as registrars find it easier to push on with ICU/curative medicine.
The arrival of the emergency physician (consultant) present in ED 16/24, 7 days, and on call, has led to considerable gains, with a mature discussion of the options..
I see lots of families in ED who feel unable to manage the very end of life, despite good intentions. Agonal respirations are frightening, and families are frightened of giving “too much” morphine, lest they hasten death. Palliative care visits are great, but are not always available. The ED provides a common back-stop, imp Iroved by ED clinicians having both interest and training in Palliative care. It’s not likely we will be going backto death at home and coffins in the sitting room- we no longer accept letting “nature take its course” without intervention.
Having been through the process of my mother dying after a routine admission to a very reputable private hospital in Sydney went wrong (not as a result of medical intervention, just a very (un)lucky series of events), I have only praise for the staff that work in Intensive Care. A mature and informed discussion betwen my mother, my family and the Intensivist and the staff resulted in an outcome that can only be described as positive with respect to death. Facing a diagnosis that was sudden and not very appealing both my mother and the family chose to allow the illness to take its natural course which was fairly rapid. This decision was wholeheartedly endorsed by all the staff, particularly the ICU Specialist. I think every one was united that throwing excessive amounts of medical intervention at my mother may prolong the process, make it more harrowing and distressing for everyone involved and would not result in a favourable outcome anyway. Dignity in death is a topic that should be discussed more openly and promoted as an ideal for people facing an impending terminal diagnosis. I think the statistics show that a large majority of money that is spent on ones health during their lifetime occurs in the last six months of life! Perhaps we should look at allocating more investment in prevention and strategies for quality of life rather than merely sustaining a heartbeat at a persons death knell! I think the place of a persons death may not be as important as the manner in which they die. The responsibility for this does not lie just with the medical and paramedical staff but with the community perspective of death and what is most important to the person and their family … longevity at any cost or dignity.
A thought provoking article … Thanks.
Even when palliative services are involved , the big high tech hospital seems like the ” go to ” option. A friend was recently receiving palliative care in a hospice for an end stage respiratory condition, but in the last hours of his life was transferred to the ” Big Hospital” to be managed. What was going on ??
There is no doubt that death in Western countries has been ‘medicalised’ but this has occurred progressively over a number of generations, in the same way tht childbirth now occurs mostly in hospitals rather than at home. I guess in many ways, this is the result of the successes of modern medicine and the confidence people have in hospital care. Where death is inevitable it should occur ideally at home, or in a placeof the patients’s choosing but this requires the cooperation of relatives, who in my experience can be reluctant to take the responsibility. Palliative care services can provide home support in these cases, and the question should at least be asked .