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Palliation in the age of chronic disease.

Sixty-one-year-old AT has recently been confined to a wheelchair by progressive osteoarthritis in his right hip, which causes him considerable pain. Formerly an active individual--an avid walker and weekend sailor--AT is equally distressed by his lack of mobility and loss of independence. A hip replacement, for which his insurance company would pay, would relieve his pain, increase his mobility, and significantly improve the quality of his life. He has thus decided to proceed with elective surgery.

AT considered himself in excellent health except for the degenerative joint disease, which has recently decreased his stamina. He was therefore surprised to learn that a preoperative blood count suggested he had chronic lymphocytic leukemia (CLL) and associated moderate anemia. A thorough workup confirmed the diagnosis of Stage III CLL, which is associated with a life expectancy of approximately twelve to forty-two months. AT's physicians can correct his anemia with periodic blood transfusions and believe that his CLL poses no significant acute contraindication to the proposed surgery.

Would hip replacement be considered inappropriate therapy for AT? What are the limits of palliation in the age of chronic disease?

At first glance this case is just a little too easy. Despite his shortened life expectancy, it's hard to imagine anyone would wilfully deprive AT of a hip replacement that would reduce his pain and improve the quality of his life. But lurking just beneath the surface of this easy entitlement is a question about how far we should go in pursuit of palliation.

A seventeenth-century usage of palliation is "to cloak or disguise." Surgery does exactly that in AT's case: hip replacement will allow this otherwise terminally ill patient a surgical veneer so that he may pursue his previous life for a short time. For a year or perhaps two he will again be independent and without chronic pain, yet a chronic and progressive illness will inevitably bring death. In light of this, is surgery a deceptive cloak--or one that provides warmth and new life?

The traditional view, which made this case seem so simple, is that AT's surgery is cut from cloth of the lifegiving sort. As physicians we have always wanted to cheat death and turn back the clock one moment at a time. It would be counter to our historical nature to see AT's surgery as anything but life-promoting. One can imagine a gleeful physician watch his rehabilitated patient walk without pain and hear once more of AT's weekend sailing exploits.

At the heart of such a physician-patient celebration is the briefly suppressed knowledge that this is their last victory before the final battle with leukemia. Given the surgery's success, both can willingly suspend disbelief and momentarily embrace the idea of a "cure." This sort of deception can continue as long as AT remains relatively asymptomatic from his leukemia. It persists because both physician and patient have a stake in their final victory together.

Under the cloak of such benevolent collusion a physician may fail to recognize that even technically successful surgery may not win the penultimate battle for a patient's life. If circumstances dictate that the pain relief and independence sought through surgery will be rapidly overtaken by a progressive leukemia, then despite its feasibility surgery might be injurious. The injury comes not from a failed hip replacement but rather from a failure to meet a patient's inflated preoperative expectations.

Confronted with the facts of this case it would be all too easy to see the surgery as therapeutic and fail to appreciate that it may ultimately be palliative in nature. When healing or making whole are even remotely or briefly within reach surgery seems appropriate. But when it is generously offered in the context of irremediable illness, the largess of the offer is misleading and evasive.

The distinction that should guide our understanding of AT's case then is whether surgery can achieve therapeutic or palliative goals. Given a three-year life expectancy, the surgery is clearly therapeutic. At six months we are less sure. Because palliation is a kind of masquerade, it is inherently deceptive; we have trouble judging it.

Palliation was once synonymous with end-stage cancer care in which efforts were circumscribed and limited to morphine, radiation, or hospice care. Time frames were short and goals were limited. But in our age of chronic illness, therapies once reserved for "curative" treatments can now be used in the service of palliation. We must not mislabel palliative services because they happen to employ advanced technology--an intervention should be defined as therapeutic or palliative based on the clinician's intent, not the sophistication of the technology employed.

Blurring the distinction between curing and caring raises important concerns in an era when palliation is no longer inexpensive and outcome instruments are perceived to be important. If a formerly "curative" therapy is used palliatively, outcome measures may categorize it as a failed therapy unless we recognize that it was never intended to cure. A cost-benefit analysis of AT's successful hip replacement might find it exorbitantly expensive if he were to live for (only) a year. But if the intent were recognized as being palliative, the surgery's success could be measured on more appropriate grounds that take into consideration the patient's independence and pain relief.

Proper palliative care serves the goals of medicine. At a time when we are ever more concerned with providing access to basic care to all, it is important that palliative measures receive their due. Moreover, patients whose chronic diseases are the product of tertiary care are entitled to palliative efforts that might temper their conditions. The same individuals who came to expect acute care from their physicians have every right to expect commensurate care for their resultant chronic conditions.

The possibilities for confusion about palliation are limitless unless physicians recognize that they will care for more patients like AT with technologies they once reserved for making people well. By clearly distinguishing therapy and palliation, we can ensure that patients receive the care they require, even when cure is no longer possible.

Joseph J. Fins is visiting associate for medicine, The Hastings Center, and fellow in medicine, New York Hospital-Cornell Medical Center.

The is something maddening about cases of this kind. Why do I say that? There is, in principle, no way of giving a sensible answer to the dilemma posed by AT's case. It is not that we lack sufficient details about the clinical situation; they seem clear enough in this case. What we lack is any sense of the economic context in which the case is set.

If AT is not given his hip replacement, what would the money saved be used for? Or put another way, if AT is given what he needs, what will be taken from the needs of someone else to pay for it? Or, as an economist might put it, what are the "opportunity costs" of spending money on Mr. AT's hip replacement? Might we not spend it better on, say, Mrs. AT's need for reconstructive surgery after a mastectomy for her breast cancer, or for their grandson LT's need for a well-trained mathematics teacher in his third grade class?

Yet increasingly, in the name of cost containment and the efficient use of scarce resources, cases like this are being discussed. My instinct is to say we should refuse to discuss them altogether, or even to take them seriously, unless that can be done within a meaningful economic context and rational health care system. As the case is given us--knowing nothing about the context--the argument could reasonably go many ways. What are the standards of comparison to be?

I could argue, for instance, that AT should be denied the hip replacement because that money could surely be spent on someone even more in need of relief from pain and suffering than he is. Or I could argue, as the British seem to do, that even if high-technology medicine should in general be restricted to nonelderly patients, hip replacement displays a good cost-benefit ratio simply because the costs of caring for a bedridden or otherwise immobile patient will likely be even higher. Still again, I could argue (consistent with my general views) that caring and palliation should always have the highest priority and that, on those grounds alone, the hip replacement is justifiable (while an expensive experimental treatment to save his life from the leukemia would be less so).

Yet I believe each of those arguments becomes meaningless without understanding the economic context in which the problem arises. I assume that this patient is an American. If so, then as Norman Daniels long ago enlightened us, there is no good reason for AT or his physician to give up any expensive treatment in our open-ended, crazy health care system. There is rarely any assurance the money saved will be put to better use.

In the end, just these kinds of cases show how necessary it is that we move to a closed universal health care plan, and that as part of it we put in place a priority system of the kind being advanced in Oregon. Unless we have come to some collective decisions on relative priorities in the health care system as a whole (or at least within coherent sub-parts), we will have no basis whatever for sensibly deciding cases like that of AT. I think it would be perfectly appropriate to take age into account in a priority system--but utterly inappropriate to do so in an ad hoc way with economically contextless decisions.

Unless we know how the money might otherwise be spent, we know nothing of value about such cases. We should refuse to talk about them and just urge AT's physician to get the hip replacement for his patient however he can, no holds barred. The present system in fact rewards those physicians and patients who act as if only the needs of this patient here and now count. Their behavior is rewarded both because our present system legitimates, in the name of health, the most unbridled self-interest, and also because, if self-interest is not pursued, any sacrifice made may result in no alternative good whatever. Of course that is about as silly and unfair a way to run a health care system as can be imagined. It just happens to be the way we do things in this country.

Daniel Callahn is director of The Hastings Center.
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Title Annotation:Case Studies; Commentary
Author:Fins, Joseph J.; Callahan, Daniel
Publication:The Hastings Center Report
Date:Jan 1, 1992
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