Random Thoughts from a Restless Mind

“We often think of medicine the way we think of math. We go through the diagnostic process and at the end we get an answer.”*

The modern era of computer-assisted medical diagnosis and computerized medical records began at the University of Vermont in the early 1980’s. I was a medical student at UVM from 1982 to 1986, and my professor Larry Weed, M.D. is occasionally credited as the “father” of computerized medicine. Dr. Weed and I engaged in several epic “battles”, publicly disagreeing about the place of computers in the down and dirty acts of medical diagnosis and treatment. My problem, then and now, was the very premise upon which he based both his work and his conclusions, that the education and experience of a living, breathing doctor was not a match under any circumstances with the power of mathematics in a beeping, buzzing computer. And this was in 1983!

Fast forward to, say, 2003. The term “outcome-based medicine” is starting to be in vogue, the new darling of both the academic intelligentsia and the Beltway policy wonk set, an infatuation that rests on the notion that this concept is somehow new. A cognitive breakthrough. Revolutionary. A way of thinking that will surely improve medical care in the United States while simultaneously saving countless Billions of dollars. If only we would embrace the power of math–the answer’s right in front of us–we would surely succeed! And yet “outcome-based medicine” isn’t really all that new. Dr. Weed used the example of serum lipids and heart disease, medicine vs. cardiac bypass surgery, with years survived as the outcome and diagnostic data as the input to his programs. Heck, the granddaddy of all medical trials, the Diabetic Retinopathy Study, was nothing if not “outcome-based medicine” and it was published in 1978!

“In math, you can check your results by flipping to the answer key in the back of the  book. Medicine is rarely that certain”. When doctors treat a patient the “answer” is the outcome. Did my patient get better? Does he see better after I removed his cataract? Did she live? We evaluate the input on the left side of the “equation” only when the output, the outcome, arrives on the right side of the equal sign. Unlike math where the laws of the equation remain ever constant, in medicine the equation takes place in the black box of a real, live, patient.

“We make our diagnoses based on likelihood and risk.”* On the front side of the equation, where data and diagnosis are the input, doctors are in many ways number crunchers or risk managers. Here it is possible that Dr. Weed’s computers might come in handy, but even here the softness of the data, the input, weakens the power of his math. Did the patient give his entire history to his doctor? Did he forget something? Did he tell the truth, or did he relay what he WISHED was the truth?  Did the doctor hear everything the patient said? Did she have enough time to ask the next follow-up question? Was every sign that would make the diagnosis more secure present at the time of THAT particular exam? Were the right tests ordered and were the results all conclusive and consistent enough to place all of the information in a tight silo of clinical characteristics so that some medical math might apply?

There is a certain arrogance in the notion that our education and our experience are sufficient to make a diagnosis, sufficient to choose and implement the correct treatment, whatever either may be. It is, however, an arrogance built on decades of results, each year bringing better outcomes than the last. It is difficult to quantify and validate this position because it is difficult to evaluate the nuances built into both sides of the medical equation, the diagnostic input and even the outcome output. In math a “2” is ALWAYS a “2”, no matter where one finds it in an equation; the quadrantic equation never lies, and it is always solved if you follow the rules. In medicine a “2” is only sometimes a “2”; it is just as likely to be a “2ish” on both sides of the equation, and it is startling and maddening when you realize that this is usually the case.

The arrogance of medicine, built on history, is exceeded only by the arrogance of those who would impose strict math on the practice of medicine. For these people, the Beltway policy wonks and omniscient pundits, a “2” is always a “2”. Why shouldn’t it be? That’s the way it works in the budget and on Wall Street. Look what happened when people wished that “2” was really a “4” when they signed their mortgage papers! If only we could get doctors (and hospitals) to follow these strict guidelines on how to take care of diseases A, B, and C. We could have better, healthier people and spend less money! All of this is true, of course, as long as a “2” is always a “2”. I hate to sound all mysterious and “in the group” and all, but have you noticed how few people who feel this way about the practice of medicine have ever actually practiced medicine?

We are imperfect beings, both we who are doctors and we who are patients. Until we have diagnostic tools like that of “Bones” on the original Star Trek, that magic hand held wand he would sweep over the stricken on the Enterprise, it will be impossible to look at medicine as we look at math. We will always be uncertain to some degree about everything that is on the left side of the equal sign. Every “2” necessarily “2ish”. Did we get the right diagnosis? Did we get the right result? Did we get the best possible outcome? “Uncertainty is the water we swim in. Often we can’t know if the answer was right, only if it was right enough.”* Medicine is not math because the answer key at the back of the book will always be printed out of focus, slightly blurred and not sharp.

Is that a “2”? Dammit, Jim, I’m  doctor, not a mathematician!

*Lisa Sanders, M.D., New York Times Magazine, 4 October 2009

I was the best-loved grandson in the history of all mankind!

My birthday is January 7th, 1960. Gama was “born” about a year later–I couldn’t get my one year old tongue around the word “grandma” and it came out “Gama”. Now, the White family is really big on precedent, and since grandchild number 1 called Mom’s mother Gama, Gama it was for everybody. Subsequent grandchildren, great-grandchildren, friends, neighbors, heck a few Romans who lent an ear for all I know called Jane Knopf “Gama”. (This precedent thing turned out to be not so good in the next generation when my nephew, grandchild number three, called my parents “Bam” and “Grump” and it wasn’t allowed to stick, but that’s another story.)

As the first grandchild in my Mom’s family I had the perfect set-up, and the fact that I was the first male in a generation didn’t hurt one bit. My brother was born 17 months after I was, and with the two of us so close together it was apparently a burden for my folks. Turned out to be quite a break for me, though, because my brother was born in May, and at the end of June I was shipped out to stay with Gama and Gramp at the Jersey Shore, the first of countless solo visits with my grandparents. Thus began a most privileged relationship with my maternal grandparents, especially with my beloved Gama.

It’s hard to describe, especially in these days of ultra mobility where extended families live apart, how critical it was to be loved by a family member without condition. Accepted and supported with no strings attached. Time spent with Gama was time spent in a guilt-free bubble. You behaved because it just felt so good to be in that bubble, and if you misbehaved forgiveness came in waves a very brief instant after any punishment. I visited my grandparents for weeks at a time, especially in the summer. My aunt Barbie, 16 years my senior, made it OK for the rugrat to be around even though I was clearly messing up her “only child” status in the house. Those were good times. I had a very special and unique relationship with Gama and Gramp. If I close my eyes and it’s very quiet I can still hear them…”Dar”.

Apparently everyone in my family saw what a special relationship I had with them and sought to preserve and protect it. It does no good to share any dark family secrets, but it seems that all was not as warm, loving, and tranquil as it appeared to me. It never is, eh? In fact, I was the last to discover any of the family’s darker secrets, long after my siblings, long after the cousins 10 and 12 years my junior. I was 30 when my aunts visited us in New York at the end of my residency years when I became aware of how much I’d been “protected” from over the years, protection so effective that any present day revelations cannot dim or diminish the memories of my life with Gama.

We lost Gramp when I was around 17. when he succumbed to his nth heart attack. That whole time is really just a blur, from the phone call I took in Rhode Island with the news from my uncle to the memorial service in Miami where I stood next to Barbie as she tried to read her farewells. What I remember–indeed all I really remember clearly–is Gama saying over and over, “I didn’t get to say ‘goodbye’.” I didn’t get to say ‘goodbye’ either. Maybe that’s why I can still hear Gramp every now and again…”Dar.”

Gama stayed in Florida at King’s Creek for a couple more years, living in the same apartment I’d visited so many times before. I even made one last solo visit when I brought my new college buddy “Kid” for a week of spring break fun during freshman year. Every family seems to have one adult who’s cool, don’t they? Yours does. Admit it. There’s a parent or an uncle or a grandmother who’s just cooler than all of the other adults, right? Well, in our family it was Gama. My Gama was cool! As the years went by as more and more of our friends got to know her it seemed she just got cooler, but it turns our that Gama was ALWAYS cool. She entered college as a pre-med student in the days when women did not become doctors. Almost got away with it, too, until her mother found out and transferred her into education. She dated the gay boys when she was younger because they took her to the best clubs and they were the best dancers (and she didn’t have to worry about getting pawed on the train home from New York).  Yup, Gama was cool.

After a few solo years in Miami Gama moved in with my folks in Rhode Island, spending several months each year with my aunts and their kids in Florida. She never really called us just by name, it was alway “MY Dar”, my Ran, my Tracey, my Kerstin. My Jenny, Rick, Mike or Ed. All eight grandchildren now clearly had a unique and special relationship with Gama as she was now living with all of us. She was still my biggest fan, my brother Randy’s defender (Ran was the “black sheep” by choice when we were younger), Tracey’s cheerleader and Kerstin’s confidant. Even though I can’t describe them as well I know that each of my Florida cousins had some version of the same specialness.

Some time ago, I was in my early thirties, Gama fell and broke her hip. Word came from the hospital that she was failing–a broken hip is often the end for older women. Beth called me on the way to the OR, on my way to do cataract surgeries. Numb, stunned, I couldn’t think. I did what we have always done in my family, I went to work. It was Beth who knew better, who cancelled my patients and put me on a plane to Miami, Continental through Greensborogh, North Carolina. Beth who let everyone know that I was on the way, alerting everyone in Florida when I was delayed in Greensborogh so that Barbie knew where to to leave the message. I sat sobbing in the airport after the  gate attendant told me Gama had died. I wouldn’t get to say goodbye.

My Mom and I spoke at the memorial service representing the children and grandchildren, Mom all icy control, me crashing and burning and choking my way through. I told one of my favorite stories, the one about the little girl who was standing in front of her grandfather’s casket, stomping her feet, clearly angry. “He can’t be dead. I wasn’t done with him yet!” That’s very much how I felt when Gramp died, and I think if we’d had the chance to ask Gramp he would have told us that he wasn’t really all that done with US when he died, either. I definitely wasn’t done with Gama, either, but Gama was done with us. She was ready to go, so long after Gramp left, so long living alone among all of her special kids. I said then, and I still wish today, that she just hadn’t been in so much of a hurry. I never got a chance to say goodbye.

Maybe that’s why even now, when it’s very quiet, if I close my eyes, I can still hear her…”Dar.”