Wednesday, August 20, 2008

August Days

by Greg Simon, President, FasterCures

This August my days are focused on preparing to send my first born to college. Seven years ago this week, I was focused on a very different journey -- my father’s passage from this life at the age of 91 after a short struggle with small cell lung cancer. He died on August 27, 2001, a date notable because it spared him in his last days the trauma of seeing the calling card of 21st Century terrorism on September 11 that year.

I have thought often of my father’s death in the context of my work at FasterCures. He was a model of “compressed morbidity” – living long and dying quickly, rather than fading out over many years. He changed his behavior after a small heart attack in his fifties, brought on no doubt by smoking which he promptly quit. He walked home from his grocery store on Main Street every day for lunch and a nap. He ate healthy food, didn’t drink, and – in addition to the walking commute to the store – exercised by shadow boxing in front of the bathroom mirror every morning.

Despite his personal good habits, he became a victim of the healthcare system of small town America. When he complained about “tingling” in his legs, his doctor gave him Valium to which he promptly became addicted to the point of needing sleeping pills at night since he was medicated all day. When my sister and I discovered this we intervened to switch him to Motrin gradually until finally he didn’t need the Valium. A few months later on another doctor’s visit, the same doctor put him back on Valium.

The few times in his later years he was admitted to the hospital for minor operations, he was given Demerol which causes you to go psychotic if you are on Valium. But, of course, in those days of paper records (these days too, I should point out), the hospital didn’t know or negligently failed to notice or care that he was on Valium. They found out when orderlies had to chase him down the hall, trailing his feeding tubes, to get him back to bed. I once had to block him from trying to walk through a wall in his hospital room to what he thought was his dining room at home.

His cancer diagnosis brought a completely different set of challenges. First, it was amazing he was diagnosed at all. There were no oncologists in Blytheville, Arkansas then. Two doctors came over from Memphis twice a week on Tuesdays and Thursdays. As I testified at Sen. Kennedy’s hearing on cancer several months ago (before his own diagnosis), in Blytheville, you could only get cancer on Tuesday or Thursday. But with the diagnosis came the Scylla and Charybdis – chemo or radiation, since that was what the two doctors offered.

How was a patient 91 years old living in a small town supposed to make that decision? Fortunately my father knew people who knew people – that would be me. I called Al Rabson at the National Cancer Institute who was well-known in Washington for offering helpful advice on such matters. He reviewed my father’s records and X-Rays, reviewed the two doctors and their training and gave me the news. My father would die from this cancer but he did not need to be in pain, so skip the chemo, focus on radiation to keep the lungs clear enough to avoid pneumonia and enjoy the last months as much as possible.

Of course, giving effective pain medications to someone who has been addicted to Valium for years is not easy. We went through “pain patches,” Oxycontin and finally morphine. After six months, my father slipped into a coma which gave him release from the pain. After a few days, the hospice nurse – a most miraculous find in my small home town – told us “Your father is going to die in the next thirty minutes.” And as my mother and sister and I sat there, we experienced that ineffable but palpable difference when the quick becomes the dead.

I have often thought how different his death would have been if he and my mother had been on their own. How confused they would have been in dealing with the cancer; how painful the end could have become. I have thought too how strong he must have been to survive the bad medical care he received all his life in the Arkansas Delta and to still live to be 91.

It is simply not acceptable or tolerable that we still are killing people with medication errors in hospitals (both by giving them the wrong drug or by giving the “right” drug to the wrong person). It is inexcusable that the best cancer care is still available primarily only to people who know people – no matter how many people those people, including me, try to help.

My father didn’t live to see me launch FasterCures with Mike Milken five years ago. But his life and the circumstances of his leaving it launched me on this path and live with me every day. Through our work I hope we can improve the lives of people who don’t know people, of people who live in places where you can get cancer only on Tuesdays, and of people whose desires to live a full life and avoid a long, painful decline into death depends on the kindness of strangers.

1 comment:

Steve Davison said...

As a life long friend of Greg's and also as someone who attended his father's funeral, I am moved by this post. It captures two things perfectly: One is Greg Simon's ability to look at a situation (i.e. healthcare in America) and see it with clarity and communicate the complexities in a manner that enable the unintiated to see clearly as well.

Secondly it illustrates Greg's abiding love for his family and loved ones. Faster Cures and therefore the wider community is well served to have Mr. Simon as the guiding force behind such an important endeavor. Keep up the good fight Greg.

Steve Davison