When I first heard Sen. Ted Kennedy had been diagnosed with a brain tumor my heart sunk to my heels.  That’s what happens these days when I hear about any family hit by the same devastating disease that took my father’s life just over six years ago.  The news stirs painful memories and a deep empathy that's hard to articulate.

Being a frequent news item, Sen. Kennedy’s condition keeps bringing me back to a year I’d like to forget, but cannot and should not.  Yesterday, for instance, The New York Times ran “The Story Behind Kennedy’s Surgery,” a report on how Sen. Kennedy came to choose surgery at Duke University when his doctors at Massachusetts General Hospital advised against it.  It reminded me of my own family's recurring struggle to make a decision and then to live with it. 

The story also reminded me of a news magazine show, 60 Minutes I think, that profiled Duke University’s brain cancer research just weeks before my father died.  My father, in no condition to even move from his bed, became convinced he needed to go to Duke because of the rosy picture they painted on their progress.  At that point, I had a good sense for the state of brain cancer research, and I felt quite certain Duke exaggerated their performance.  Maybe Duke thought they were doing good by spreading hope.  (Then again, maybe they were just trolling for more research dollars.)  But in my home that evening, Duke gave my father false hope for a reprieve and put my family in the very awkward position of denying him that hope.  

The story on Duke was, in my opinion, a very public example of the medical community not playing straight with terminal patients.  Many doctors think it’s best to keep hope alive.  However, Marilynn Marchione recently reported on new research that suggests honesty is still the best policy.  The research shows that patients with doctors that discussed end-of-life care were no more likely to be depressed, less likely to spend their last days in a gloomy hospital, less likely to pursue futile and expensive treatments, and their families were more likely to be at peace.  That was certainly my family’s experience.  In fact, any time a doctor failed to shoot us straight it resulted in far more emotional stress for my family. 

The year my father died was filled with plenty of other experiences that exposed me to the best and the worst in America’s health care system.  The truth is, those experiences, above anything else, are what motivate me to pursue and promote health care reform.  

With all that said, you might think I would be in favor of a controversial bill recently passed by the California Assembly that requires health care providers to give dying patients straight answers.  I certainly understand the motivation behind the legislation.  Patients and their families do deserve straight answers when death becomes all but certain.  But, as a patient, I certainly don't trust California lawmakers or any other lawmaker to put end-of-life words in my doctor's mouth.  Indeed, lawmakers have no business directing personal conversations between a patient and their doctor.  Please, let's leave that to the medical schools, medical societies, a doctor's own conscience, and let's not forget the patient's responsibility too.