Key is knowing when to stop
Professor Stephen Leeder
31 January 2007
Patients seeking escape - even euthanasia - from disabling and painful illness raise questions about how the health system will respond to the growing numbers with serious and continuing illnesses.
The advances in preventing and managing heart disease, stroke, diabetes, respiratory disorders and cancer since the mid-'60s are reflected in improved survival rates and a general increase in life expectancy. Heart disease is the most spectacular example, where, from a peak in 1966, death rates have fallen by 70 per cent. In the 1960s, sudden death from heart attack was common among working men. Now, most deaths from heart disease occur among people over 70.
With these successes have come challenges: the care of people with serious and continuing illnesses, and knowing when to stop seeking to prolong life. Solutions to both are within easy reach. But to clarify the possibilities for action it is helpful to unpack what is going on with these conditions that have changed so much in the past four decades.
With heart disease, through prevention we have decreased the number of people suffering and dying from it; there has been an absolute decline in incidence reflected in the fall in numbers of sudden deaths. And we have become smarter at treating it: there is still a lot of unprevented heart disease, but the prospects of more trouble-free years of life are much brighter as a result.
For those who have survived heart disease where once they would have died, there is a lifelong medical commitment.
Although rehabilitation and continuing care for patients leaving hospital after, say, their first heart attack, are known to be effective, surprisingly few patients - perhaps fewer than one in five - embark on such programs. The same applies to patients with emphysema and similar problems. One reason for this small participation rate is that these services are not available in many places. Many will receive good care from their general practitioners and community nurses, but were rehabilitation and continuing care a mainstream clinical activity, there would be street marches of protest that it is so scarce.
What is needed is a scaling up of these post-hospital care programs so they are available to all who want them. New private health insurance provisions will begin in April to support community care, and we will need to ensure that equivalent services are available to public patients.
The second challenge is more subtle: it concerns knowing when to stop treating people whose chronic disease race has been run. Patients speak of their fear of being unable to obtain palliative care if admitted to hospital in crisis at a stage in their illness where they do not wish to have further high-tech care.
A man with emphysema with whom I spoke recently told of splendid family support. But now, he and his wife felt that the next time he had an acute flare-up and could no longer stay at home, they did not want high-tech rescue at hospital. Instead, he wanted medical care consistent with his dying peacefully.
The way services are configured, faced with this man in crisis, ambulance and emergency hospital staff will seek to prolong his life. Not knowing him, not treating him energetically is a risk that they cannot take. They must give him the benefit of the doubt.
An electronic medical record that portrayed the patient's condition, made bold and plain where he or she was in the disease trajectory, and documented the patient's wishes, would go a long way to overcoming this problem. The idea should surely appeal to everyone, including those who run hospitals strapped for resources. Avoiding two weeks of intensive care for someone who does not want it makes sense from every angle.
As the number of older people with chronic illnesses increases, and as we become ever more successful in turning critical threats to life into health problems that need continuing care (but extend quality and quantity of life for us), our health care services need radically to scale up formal rehabilitative and continuing care programs.
We need also to allow people with these problems the dignity of deciding when enough is enough, not then abandoning them medically or refusing to admit them to our hospitals, but responding to their wishes with appropriate, supportive but non-heroic hospital care.
This first appeared as an opinion piece in The Sydney Morning Herald on 31 January 2007.
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