by Daniel Callahan
The Hastings Center
Reproduced from Progress in Palliative Care 2000;8:3-4.
by kind permission of the author and Leeds Medical Information, The
University of Leeds.
Justice, Biomedical Progress, and Palliative Care
A remarkable, troubling, and little observed truth is that the need for palliative care is far greater now than in the past. It is remarkable in the sense that one might intuitively have expected, given medical progress, for it to be less needed. But as is well known, people die more drawn-out deaths now than earlier, thanks to the conquest of most infectious diseases, which brought swifter death, and the rise of degenerative diseases, which bring slower death.
It is a troubling truth because it is never easy to accept the mixed blessings of progress, so often beneficial in one respect and harmful in another. It is (or, at least until recently, was) a little observed truth because the de facto primacy that modern medicine has given to cure, not care, obscured what was happening when cure ran out, as of course it always does at some point. That many developing nations, which manage at least a few tertiary medical centres, often provide no budget at all for opioids, is a kind of stark reminder of the neglect of palliative care.
While it is surely the case that palliative care, as a basic medical need and a growing sub-specialty, is coming once again into its own, its relationship to biomedical progress has been too little examined. If it is in great part that progress which has created the need for more widespread, accessible, and sophisticated palliative care, we might well ask: but just how much more progress of this kind should we want? Do we want the kind of progress that makes for harder, slower, and more expensive deaths %en% even if there is good palliative care waiting at the end? Would that really be progress?
In partial response to that question, I state a basic conviction. The greatest importance of palliative care medicine is not simply the benefit it can bring at the end of life, but its recasting of the goals of medicine, trying to better balance care and cure, and in all of life not just at its end. Because of the priority given to cure, progress has been defined most generally as a reduction of mortality rates. Death was made the enemy and modern medicine was thought to have the answer to that: get rid of it.
One result was, as noted, the change in the nature of dying, from fast to slow. The other result has been a steady, almost uncontrollable rise in healthcare costs. Death is indeed forestalled, but then more people experience lives marked by chronic, usually incurable, disease and disability. Increasingly, medical progress is generating a gap between what is technologically possible and what is economically affordable. Technological progress %en% of late, especially with pharmaceuticals %en% is the main driver of cost escalation, but it is a progress that brings amelioration rather than cure, and too often a small amelioration at a high cost. A disturbing trend, moreover, is now becoming more pronounced: only the wealthiest people and most well-endowed healthcare systems can afford much of the progress. Rationing is not simply being talked about: it is appearing, even if usually hidden.
I draw from this trend a disturbing thought. Medical progress itself may be the greatest threat to global health justice, creating a kind of medicine that grows more and more unaffordable for the majority. To be sure, one response will go, most new technologies begin expensively %en% recall the history of TV sets, or dialysis %en% and then come down in price. True enough, but then the population on which they are used almost always expands, more than offsetting the declining cost per unit. It is, therefore, not the individual technology costs that should catch our eye. It is the ensemble, or aggregate, of the technological costs that count. And there the distinct historical trend is an overall increase in healthcare costs. Moreover, as happens even with palliative care, once thought low-tech in nature, new technologies are brought in where none of any consequence existed before.
There is a still more serious rejoinder to my line of thought. Should we halt the development of new technologies simply on the grounds that they may add to healthcare costs? It is hard to say that. Even if everyone does not get the technology, many will %en% and perhaps in the long run all can afford it. Perhaps so, but that may not happen, and there has been a steady rise in technologies that not all can afford, whether the AZT "cocktail," utterly unaffordable in poor countries, or coronary by-passes, hardly available outside of the developed nations.
Is there any way out here? My own bias is this: it is better to have poorer and older technologies that are available to all, than better and more recent technologies that must be rationed. A fair and general allocation of healthcare resources, even with less than up-to-date technologies, is better than a system creating a massive technological gap between rich and poor.
This is only to say that justice and unconstrained progress are no longer wholly compatible. When the progress persistently moves beyond a country's ability to pay for it, justice is hurt. The rich will not suffer, but everyone else will. Most needed is what I call a "sustainable medicine." By that phrase I mean a medicine that accepts death as part of the human condition, that is not obsessed with the struggle against disease, that understands progress as learning better how to live with, and die with, mortality as a fundamental mark of the human condition.
A revived palliative care medicine, drawing medicine back to its roots, moves in precisely that direction. It opens the way for a medicine that better balances life and death, curing and caring. It no less opens the way for a palliative medicine that is not just a new medical sub-specialty but a way of thinking about medicine's goals in a more penetrating way. The long-sought goal of a compression of morbidity %en% a long life marked by good health right up until the time of death %en% still makes sense. It is now within reach. It requires a greater orientation to health promotion and disease prevention, not more high technology medicine. Palliative care at the end of an otherwise healthy life is preferable to such care when life has been excessively extended.
Daniel Callahan, a co-founder of The Hastings Center, is now Director of its International Programs. His most recent book is False Hopes: Overcoming the Obstacles to a Sustainable, Affordable Medicine (Simon & Schuster/Rutgers University Press).