ABCD Exchange : Summer 2003 : Letter From The President

Letter From The President

Joanne Lynn, M.D.

Here's a quick question for a medical ethics class: Should society pay for a pill that would extend life five years? Suppose the pill only cost $1, and only had to be taken once every year? Then the answer seems clear. But what if the cost of the pill is $25,000? Then what does society do? Clearly, at some point all the easy rhetoric about "no price on a human life" comes up against the simple calculus of what we can generate in funds for life-extension. People generally agree that we can not end up paying that sum for millions of people, but it is much harder to agree on what to do if such a pill really existed but could not be given to all.

The implantable cardiac defibrillator (ICD) has created such a "pill" for real-life debates on what we can afford and what we cannot.

People who are not very sick with heart disease actually have a substantial chance to live longer with an ICD like the one made famous by Vice President Cheney. Like him, most people do well for a long time, after an initial surgery and adjustments. However, the device and process is extraordinarily costly. The device alone is about $25,000, and putting it in and getting it adjusted just about doubles that. The expenses in the ensuing years are not really reduced, so this is an "add on" cost.

Indeed, since patients live longer, this device not only costs a great deal, but the longer lives also cost a great deal (especially since the patients are sick with heart disease and with other conditions associated with aging). More to the point, there are a lot of us who qualify. According to one study, as many as 4 million Americans qualify right now, and 400,000 more will qualify each year. Of course, patients who are "almost" as sick as those in the study will probably prove to have the same good effect, so the numbers are almost certainly too low. But they are enough. Imagine that it took five years to catch up with the current demand - that would be 400,000 newly qualified patients and 400,000 of the back-log (1/5 of 2 million). Those 800,000 folks would cost $50,000 each, for a total cost of $40 billion.

Washington’s policymakers are used to billions flashing by -- but it is a huge amount, especially given the financial straits of Medicare and Medicaid. Most of the money would be spent in Medicare, since most people who ever get heart disease have it as they age.

Medicare will have to fund many more ICDs, so we will have to find ways to dodge the cost bullet. First, we will have to deal with a rash of stories of grim complications and problems, all of which will fade away as we get better at dealing with these devices. We will think that some patients might refuse the device, given the possibility of problems. Don't count on it. Up against dying, most patients take the treatment, especially when it increases your chances of living longer. Although the device is annoying, its worst ill effects stop when it is turned off (from outside the body), so people will take the risk.

We will hope that some other constraint, like availability, will keep costs down, but that too will be transient. As with other technologies, the cost of the device itself is likely to go down as production goes up, but any such reduction will be offset by the numbers involved. Cutting the cost of the device to zero would still leave us spending more than $20 billion new dollars for installation and upkeep!

This device is not alone. All the wonderful devices and miraculous drugs that we welcome with enthusiastic headlines (and our increased appropriations for NIH) come with substantial costs, even when they work well to prolong life.

We cast about for some arbiter of our use of these things. Is there a principled way to decide that some developments are "just not worth it?" In our current system, we cannot even ask this question. By law, Medicare must cover everything that is an improvement in medical care. No group has been given any authority to consider costs – if care is clearly better, Medicare is to provide it.

This is a societal crossroads. If we continue to agree to treatments that bankrupt Medicare, our largest and most reliable social service agency, we risk disassembling security for old age and our community commitment to care for one another in our late years. We will then become less egalitarian and less community-oriented. If we instead find a way to step back and carry on a thoughtful discourse about the nature of old age, the merits of life-prolongation and deaths from frailty (instead of sudden death from heart rhythm disorders), and the limits of finance and physiology, then perhaps we would shore up our commitment to care for one another in old age and keep at least that part of the care system community-owned and operated – and secure and reliable.

If that means that only a small segment of people receive implanted defibrillators under Medicare and others go without, we'd honor the principles that led to using such expensive technology where it does the most good. At present, we even have to put these devices into demented persons, because that is what equality for the disabled has seemed to require. Who among us would want society to spend $50,000 on a life-extending device, implanted when we are suffering from dementia? Surely, most of us would want society first to have guaranteed good nursing care. However, getting a society that can make any choice, without also sanctioning inadequate care for vulnerable people, is challenging.

We have long tolerated rising health care costs and have found ways to incorporate them into our budgets. We have rather deliberately tolerated barriers to long-term care, home health care, prescription drugs, and self-care education. Now we have to confront the possibility that something effective, flashy, and desirable is just too costly. Will we learn to put even medical care within a budget, at least for Medicare, or will we destroy it? That is what is at stake. If we want to do the latter, we need better headlines, more vigorous debate, and more research on costs and quality. We need to convene town hall meetings and health services delivery research, and wait for a while on our enthusiasm for molecular biology and genomes. In short, we must learn how to live in a community bounded by shared goals and limits, and we must relearn the fact that it is not just how many days we have to live, but how we live the days we have.

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This content is provided by Americans for Better Care of the Dying. For more information, visit www.abcd-caring.org.

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