Industry Insights from Paul Meade, M. Sc, MPH
There have been some recent announcements in the early detection of Alzheimer’s disease that will help patients determine the onset of early-stage disease. By combining imaging technology with some in vitro diagnostics that looks at specific biomarkers, physicians can provide some patients early warning signs of Alzheimer’s disease. But there is still one important issue to deal with at this time. There is no really effective cure for this dreaded disease.
So the question is: when do you want to know? As medicine advances and newer and more effective diagnostics tools become readily available, the ability to detect diseases earlier can mean we have more time to treat such disorders. On the other hand, if there are no effective means of treating these diseases, do we really want to know? Proponents of earlier diagnosis state that knowing what is inevitable helps a person better prepare for such eventualities, such as getting one’s will in order, deciding to do many things that were put off for years, travel more to visit loved ones, etc. Whereas opponents state that knowing about an impending disease that cannot be treated or controlled only leads to heightened anxiety and depression. So what’s the right answer? Of course, it depends on the person.
If individuals are free to choose when to know about their predisposed condition, should we continue to pursue early detection of as many diseases as we can despite lack of readily available treatment? Does this make good economic sense in a growing healthcare budget? Does it make good moral sense in an open and transparent society? Does the healthcare delivery system pay for such early detection tests, or should that be borne out by the person who wants to know? And what about family members? Should a family member force such a test on an aging parent so they can decide an appropriate course of action, such as a nursing home? Would employers suddenly offer early retirement to an individual predisposed to a debilitating disease for which there is no known cure? There are many ethical issues to deal with when offering people very early detection of serious disorders, such as Alzheimer’s disease. As the ancient Chinese proverb states, “Be careful what you wish for.”
As patients rely more and more on their health care provider to offer proper counseling around some of these moral dilemmas, it is vital that our providers seek the necessary training to offer solutions to ethical issues, and are given adequate time to spend with patients to explain some of the choices confronting them. Thought leaders in the medical community need to expand their disease expertise to include counseling in the early detection of untreatable diseases, as well as some of the unintended consequences. This way, when to know can become a better informed decision.