Dying by Stages

I read an article which I felt was vindicating. I have long maintained that handing out prognosis to Multiple Myeloma patients is a dangerous and even reckless practice. Dr. Vincent Rajkumar, a professor at the Minnesota May Clinic recently authored an article which speaks to the difficulty of offering a prognosis in Multiple Myeloma cases. My own prognosis, ratified by a total of five separate VA physicians, gave me six months to live. The opinions and prognosis’ were delivered in February of 2008.

The effect of the prognoosis on me was devastating. It affected me both intellectually and emotionally, and was a primary reason for me to seriously consider a death with dignity. Looking back on how long I have made it past my expiration date causes me to wonder how many deaths might have been precipitated by bad guesses about a person’s longevity.  I don’t mean just people who sought suicide in one or more forms, but who simply failed to apply willpower to their case, allowing themselves to simply give in. I know that my diet was affected; chemotherapy had so changed my taste that food lost a lot of appeal. That I was continually nauseous made eating even less inviting. But on a pragmatic basis, I also was able to tell myself “what the hell, I’m about to die so what’s the point?” This same attitude was promulgated across a wide and diverse set of subjects.

A death prognosis takes the wind out of one’s sails. It defeats the power of hope, a strong tool in the arsenal of cancer fighting. I know it did for me, and the ways it affected me are so many that I think it’s impossible to list or describe them all.

Of course people want to know what their chances are. Since a prognosis is basically an educated guess based on a patient’s condition and applied to statistical information, it seems more sane for physicians to explain that there is no way to accurately ascertain someone’s moment od demise. Instead, give the patient a clear and unfiltered look at the statistics while providing the clear disclaimer that this is a bell curve, and as many who meet its guidelines are outnumbered by those who don’t. Doctors need to be able to look their patients in the eye and speak the truth saying “I don’t know.”

There is a school of thought in medicine that in order to maintain patient confidence, a physician cannot show weakness. They need to be authortarian, albeit gently so. But to do that is a fallacy. Doctors play a guessing game when it comes to treatments for their patients, and as often as their choices turn out right, as many or more turn out wrong. Fortunately, for many Multiple Myeloma patients who need treatment, most of the available choices can have a positive effect. But the fact is, that each case presents its own set of conditions that definitely indicate a totally custom approach to treatment, and one in which the physician is willing to make changes on the fly depending on the response to therapy in the patient.

Many of my posts here on Deludia have spoken to the problem of offering prognosis –and physician treatment recommendations not specifically customized to the individual patient. My opinions have caused me to be banned from some information dispensers, but much of that blocking has faded for two reasons. While still condemning in nature, my anger has gone. This has happened because I have had the time to understand both my cancer and the people who’ve been treating me. I can see the pressures that treatment providers are under, as well as the sources of those pressures. Perhaps that’s the primary reason I am now considered a viable poster. My vitriol is gone. But another facet is that as research continues, the ideas I championed (and still do) are becoming ratified by mainstream experience and research.

Basing a prognosis on staging, or even using staging as a significant element of those considered to form a prognosis, is a mistake. And thank God for that, otherwise I wouldn’t be here to write about this.