What’s the point of all this? I ask not as a suicidal prelude or remark of self-indulgent philosophy, but after two days at the Association of American Medical Colleges (AAMC) annual meeting in Philadelphia, I am finding myself asking, what is our endgame here?
As conference delegates, as academics, as doctors, as a research journal—what’s the goal that we’re driving at? And I ask out of an increasing suspicion that whatever it is, it’s completely the wrong one.
In the very first keynote speech of the conference Valerie Williams, the chair of the AAMC board of directors, gave a metaphor-stretching speech in which we were all invited to join her in the “Dance of Change” (apparently it’s a tango, FYI). Exactly what the required change may be was rather secondary to the centrality of the metaphor in her speech, but many of the ensuing talks have sought to put sequins on the dancers she provided and look at specific areas that are in need of change.
And as I have listened to these talks I have realised that very few of the proposals arising “need” change. Change would be nice, change would be in some sense an improvement, but necessary?
And then my cynicism became full blown incredulity after a “thought leader session” on small data given by a computer science professor at Cornell Tech, NYC, called Deborah Estrin.
In her talk she looked at the data collected on us every day through our mobile phones, spending choices, computer use, and so on and asked if such data could be used for health ends. By way of an example she gave us her 90 year old father whose demise and death she believed could have been predicted, if not prevented by his cardiologist, by using the GPS in his phone to track his decreasing mobility, the spending on his credit card to note his changing nutrition, and his email use to show his decreasing engagement with his family.
She introduced the concepts of “leverage” and “patient manipulation” that the data would enable and envisaged a dystopian future where our cable viewing could be logged to see how sedentary we are.
I think a fair portion of the room breathed a sigh of agreement when the first question from the audience came: “Isn’t this just, erm, a bit creepy?”
But it wasn’t the decidedly questionable ethics alone of the talk that gave me pause for thought. As I walked out of the conference centre mere moments later I was presented first hand with Philadelphia’s very serious problem of homelessness. Sitting, quite literally, on the conference centre steps was a man with a sign begging for money for insulin. Was he genuine? Who knows, but it’s possible. Just 30 yards later I passed another man with sign asking for help to “fix his life.” Exactly what needed fixing was not mentioned but some basic first aid and mental health problems presented immediately.
The juxtaposition of the talk and the city begged some very big questions. Exactly how much of our time and effort (and when I say “our” I mean the BMJ as part of the entire health economy as much as anybody else) is spent trying to add mere hours of existence at the end of well-cosseted and lengthy lives, at the expense of any quality of life at all for other people?
And I ask this not as a do-gooder, socialist, or a justice campaigner, but because for all the billions spent on the achingly incremental increases to life-expectancy over the millennia, do we really see a great increase in the sum total of human happiness or does every generation merely strive to reach marginally increased expectations from the last and maintain happiness in so doing.
We are told that we may be witnessing the first generation to die at an age younger than their parents. Why is that, of itself, a bad thing?
Looking at a history of humanity beyond medicine, is love expressed so much better now than by Shakespeare? Do we laugh so much harder than the Ancient Greeks at Aristophanes? Do we celebrate with more joy than a hundred days’ feasting in Rome? Or is the medical world measuring human progress merely by longevity at all costs?
And so going back to the AAMC’s talk, small data is something we can go after. It is something that may stretch a 90-year old’s life ever further. But does that mean we should, and what are we not doing instead?
It’s so easy to be mawkish and sentimental about these things that I want to dismiss what I’m writing as simplistic teenage sophistry given ballast by an unusually stark contrast of futuristic research talks and a major homeless epidemic.
So let’s put it in a less clear cut example of longevity versus life. Two weeks ago, a friend of mine became a father. A joyous occasion for all involved. A small group of us wished to meet up in the long tradition of new fathers to wet the baby’s head with a glass of scotch and cigar.
Except that in the city of New York, where I live, public health laws are such that this action is completely illegal in a public place. And so it was that celebrating the birth of this man’s daughter was done hiding from police behind a park monument—a group including local church pastors, respected businessmen, and charity founders was reduced to hiding behind the proverbial bike sheds like teenagers.
This example is rather less stark than my experience at the AAMC. I understand the harms of tobacco and alcohol. I am all too aware of the benefit and the importance of public health measures. But I am also aware of a creeping and increasing concern that our ever growing desire to add incontinent days to what will likely be a long life, may prevent me from actually living it in the meantime.
Which in turn takes us back to the start—when we talk of change to health systems, academic medicine and education, when we look at what can be done to lengthen lives, and when we decide what it is we will publish in the BMJ, it’s worth asking the question—what’s the point of all this? Because if it’s just about numbers on a life expectancy statistic, it may well not be worth it.
This is not to ignore the great medical work that is being done and that has been done raising quality of life, the world over, for hundreds of years. But a substantial proportion of what we do seems to address merely quantity of life and I’m increasingly unconvinced that it’s a worthwhile endeavour.
Edward Davies is US news and features editor, BMJ.