What in the World Are We Saying?

Vocabulary isn’t policy, but policy should help improve vocabulary.

Imagine yourself living with a chronic infection and-after trying your best to adhere to the recommended course of treatment-being told by your doctor: “You have failed your medication. The most we can do now is salvage therapy.”

Excuse me, but who failed whom? Or rather, what failed whom? And isn’t “salvage” what is done following a shipwreck to save the cargo that might be useful elsewhere?

Having sat through a number of HIV/AIDS presentations on managing antiretroviral therapy, I still find my nerves on edge anytime I hear phrases such as “the patient failed the treatment.” It is as if the treatment were something in and of itself that can place demands on patients, set expectations of response, and give a failing grade to patients who do not measure up. It clearly puts technology in the driver’s seat, rather than the patient or the prescriber.

The activists who put HIV infection on the policy map before it even had a formal name, and who aggressively opposed finger-pointing names such as GRID (gay-related immunodeficiency disease), showed us a lot about how the naming of conditions can make all the difference in the world. The advocates for budget increases learned that naming a support program after a sympathetic infected child (ie, Ryan White) changed Congressional dynamics, even though the majority of the funds would go to the same adults in need of care who had been rejected in prior years. So where is our auditory sensitivity about therapeutic regimens?

The meaning of failure. No therapy is perfect, despite some advertisement to the contrary. Every prescribed treatment has both expected benefits and potential negatives. Despite the best research, our knowledge of the complexities of HIV infection remains incomplete. There is no guarantee that any one medication or combination of medications will be suitable indefinitely, and there is no guarantee that we have the answers that can ensure a 60-year, or even a 40-year, lifespan for every infected person.

Yes, sometimes a lack of response to a prescription medication is due to nonadherence to treatment on the part of the patient, sometimes because of a lack of understanding of the medication schedule, avoidance of adverse effects, priorities in life greater than a medication schedule, inability to tell the prescriber that the prescription won’t be filled, or any one of a dozen other issues and confounders. But nonadherence is not failing the medication, although it may be a sign of communication failure between physician and patient. Setting up any technology, whether it is a specific pharmaceutical or surgical procedure, as if it sits in judgment on those for whom it is used, is ceding humanity to machines in a very frightening way.

What about salvage? The use of the term “salvage therapy” presents another set of conundrums, because in the absence of an effective medication, it is not clear what the “shipwreck” is and what components are being rescued and for what purpose. The use of the word “salvage” in this context appears to imply that some elements of life, or some quality of life, are being pulled from the disaster of a drug regimen that has not achieved its end. But all therapies eventually run out of energy or cease to have an impact. Human life does come to an end. Implying that we are obliged to salvage some semblance of life when disease processes (and sometimes, advancing age) combine to make cure impossible and management extremely difficult fits with another image that is difficult, that of prolonging life.

There is some potential that salvage therapy means doing whatever might be attempted to keep a person alive as long as possible so we don’t have to face the limits of our ability to eliminate all human ills. If that is what salvage means, it is a sign of our continuing delusions of grandeur within the healing professions and should be excised at once!

As care providers, we do want to extend “quality years of life” for as long as we can, with the understanding that no 2 persons will have exactly the same definition of a quality year of life. But many of us-providers and patients alike-are coming to the realization that the indefinite continuation of heart and lung function (both of which can be sustained by medical devices for a fairly long time) does not fully equate to our concept of “living.”

So, by salvage, do we really mean palliative care? Some patients and some physicians, nurses, and other caregivers have made explicit the limits of active intervention in cancer and other serious diseases, while acknowledging that it is essential to ensure continuing care that includes relief from pain, nutrition as desired and possible, hydration, human contact, and emotional and spiritual care-in other words, ongoing efforts that allow each patient to come to the close of life with dignity.

If this is not what is meant by salvage, then what does this word imply? To encourage enrollment in experimental therapies so we can learn from the dying? This may indeed be a meaningful end-of-life contribution by a patient, but research has been inappropriately pushed on patients as if they owed us something in exchange for what benefit we might offer. But calling that salvage does not communicate the real issue: our present level of knowledge does not allow us to fully treat or control the disease in those we care for. To such patients, we should be saying, “If-and only if-you wish to do so, you might participate in some tests of different medications, or a combination of medications, that will likely help others more than it will help you.” This may be salvaging something good out of a bad situation, but we as caregivers need to be careful that we don’t imply that the patient is what is being salvaged.

Or by salvage do we mean taking extraordinary steps with multiple medications to attempt control of the virus? In this sense, salvage therapy may mean doing whatever might be attempted in order for the patient to sustain a meaningful life. If this is our meaning, then salvage therapy should only be done in careful consultation with the patient after sharing all of the facts and be based on our clear understanding of his or her values and desires.

Where does policy come in? This Policy Watch column is not about federal health policy, or even that at any governmental level. The policy I am talking about is the investment of resources to accomplish an agreed on purpose for a specific group. While public policy does involve government, every organization makes policy for its employees and clients, and each of us makes (unstated) policy decisions about how we will expend our resources and time. The policy needed is similar to policies often decried as being merely politically correct in its language about others. Those decrying such “PC talk” are usually people who have not been on the receiving end of medical science’s degrading or belittling terminology or have not been excluded in someway because of a label, such as race or gender discrimination in the workplace. Patients are often not in any position to think about the semantics of messages swirling around them: they are just trying to live. Some patients may not even be able to speak when words such as “salvage” and “failed” are being used. But no one should ever be labeled as having not measured up to a medication or be treated in someway as reclaimable junk.

We as clinicians-and as a society-need personal and institutional policies that attend to the subtleties of such language and reenforce the current reality that technology does not always measure up to what humans expect and to the belief that humanity will be sustained, even if interventionist medication is no longer suitable or available. We should be telling our patients whose treatment has failed “Today’s medications no longer work for you (technology has failed). The therapies we can offer now are primarily those of comfort, as you define and request them. What can I do to help?”

Perhaps the implication of these words is hard for us to face, but it is a more honest message.