Monday, November 24, 2014

The Challenge of Medical Empowerment

ABU DHABI – If people can make themselves healthy, should we blame them for getting sick? That is the stark question raised not only by broadening acceptance of the idea that people should assume some responsibility for their health by eating right, exercising, and so forth, but also by the exciting – and necessary – new trend toward patient empowerment.

Of course, the list of “good behavior” can get downright tiresome. But the question of personal responsibility is arising more and more.

“Don't blame me for being fat!” said Lizmari Collazo at the recent Medicine X Conference at Stanford University, where a group of researchers, doctors, and caregivers met to discuss (among other things) the new world of patient-generated health. To his credit, organizer Larry Chu also invited a group of patients: “Don't just talk about them,” was his message to the practitioners. “Talk with them!”

The conference discussed what is now becoming accepted wisdom. Rather than just reform health care, we should also figure out how people can maintain or regain their own health. They need to eat right (and in smaller amounts), stop smoking, drink less, and exercise and sleep more. And they should avoid too much stress, even as they follow all of these rules, monitor their vital signs, and share bio-data.

Statistically, this works. People who do these things are healthier on average. They are less likely to get cancer or to die of heart attacks; they will probably stay slim and live longer.

And, yes, society’s institutions should help them to do this. Schools should provide nutrition education (and healthy lunches). Businesses should encourage their employees to be healthy by providing discounts on insurance, offering team sports, and the like.

But suppose this fails. Suppose that, despite all blandishments, someone gets diabetes through some combination of behavior and genetics (even as other people with the same behavior do not). Should they now be blamed for developing diabetes and raising health-care costs? Or can they blame their parents or the state for their inability to be healthy?

Sometimes such things are simply bad luck – just as we used to think decades ago. It is important to remember that statistics is about generalities: For every 100 people who are 90% likely to be healthy, 10% will be unhealthy – and it may or may not be their “fault.” Yet we seem to be heading toward a world in which self-anointed saints and blamers face off against supposed sinners and suspects.

To be sure, it is worthwhile to foster healthy behavior, which will lower costs and improve many people's lives. But how far do we want to go? Where are the appropriate limits when it comes to encouraging good behavior? Can good behavior be encouraged without ever punishing bad behavior?

I suspect that different societies, cultures, employers, and governments will come up with different answers. In part, we need to feel comfortable with the reality that there is no environment perfect for everyone, and there are no perfect people. In a world of statistics, it is 100% likely that fewer than 100% of people will be happy. We try to mitigate bad luck, but we cannot eliminate it.

In practical terms, though, we would be wise to listen to Collazo’s plea: “I am not a fat blob, having [unhealthy] English breakfasts, who gave herself diabetes. I AM A HUMAN, AND I HAVE DIGNITY.”

Collazo identifies the problem for her – and for all of us: “Is there some diabetes that is preventable? I don't think anyone FULLY knows the answer to that. BUT SO WHAT? Does it mean I no longer deserve dignity if I do get it? If I ‘fail’ to ‘prevent’ it? Should I now be excommunicated from the population at large? Should I be made an ‘example’ to others? Should I be spoken of as a plague? As an unwanted thing in the world?”

We should remember the old saying: hate the sin, not the sinner. We can attempt to stop diabetes without rejecting diabetics, and to eliminate obesity without demonizing the obese.

Nowadays, people have more choices – and more opportunities to make the wrong choices – than ever before. Many people with health problems have other problems as well – whether caused by or causing their ill health. Statistically, that is a known association.

In the end, we need to acknowledge the outliers – the people who got diabetes by chance, not by fault. Yes, they may be a minority. But, for the sake of human dignity, we must allow every one of them to claim that statistical anomaly, even as we support each of them in trying to follow the path that statistics indicate could help them to lead healthier lives.

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    1. Commentedrobot 5x

      Why on earth should we blame society for low-cost junk food?! We all live in marvellous capitalist free markets don't we, where services follow consumer demand. People WANT to eat junk food and they can. Perhaps you meant that government should regulate the fast food industry, or even legislate against it?

      The problem is EXACTLY one of personal choice; there are a few very clearly identified high-risk behaviours for developing type 2 diabetes. Diet and exercise are the largest. If people engage in the risky behaviour they will probably develop the condition, and then face a (shortened) lifetime trying to manage a chronic disease.

      Encouraging positive behaviour is not the same thing as blame, especially when there can be such awful consequences for individuals and society.

      ps. Nathan - I agree.

    2. CommentedNathan Coppedge

      There may not be environments that are perfect for everyone, but there are environments that are fairly ideal for individuals. And many people fit into categories that allow benefits in areas that are not provided by medicine, such as purely ethical / developmental advice.

      These kinds of categories and environments benefit by psychologizing landscape / PR / interface not just for corporatization and logos, or just ergonomics (this being a sign that things are not moving as fast as some people think), but also highly specialized visual stimulus, and the kind that is based on real understanding.

      In this sense, perhaps what I am reaching for is a "general brand" which uses necessary corporations such as medicine or education to reach into consumer categories for the sake of a citizenship-identity parallel.

      There is potential not just for complexity, but for perfection, in the offering of consumer services. And part of this is creating a large number of functional categories. In saying this, I mean to suggest that virtualism shouldn't alienate people from consumerism----and I underscore similar sentences to mean that info-identity is ALREADY not to be impinged by corporate dispositions or assumptions. This is not ONE APPROACH, but rather a creative-minded assessment of the APERTURE TO THE OPTIMUM. It's sometimes about intermediate categories which have not been allowed to exist. Like the functional permanent pen, with purchased ink---modular refills were supposed to be workable decades ago. One thing to do is to make disposable culture more integrated with the permanent objects on the landscape---whether these objects are industry, the middle class, or citizenship concepts.

      The role of consumerism is a clear pointer to how health habits might change in relation to statistical relevance: if the consumer feels like his or her intellectual or cultural values are respected, there may be less need to cater to "disposable values" like fast food or trashy entertainment. While to one person or agency this trashy entertainment is what greases the wheels for mass markets, I find the appeal of the "object itself" unconvincing.

      And when mass consumerism becomes a flexible idea that offers many categories, people feel sophisticated enough to be getting close special attention without diabetics treatments. In my view, much is psychology and TLC. If there are some business executives who develop diabates later in life, sometimes I suspect that it is only because they are outliers who saw fit to eat poorly or not exercise. If we treat these examples as the prima candidates because they have so much leverage, it does a disservice to all the people whose baseline qualia could change.

      Philosophically, diabetes, like intellectual schizophrenia, is a substantive issue, solved by solving large social problems. If this were not the case, it would be an immaterial disease that didn't depend on an specific eating pattern. Yet, according to documentation, that is not the case.

      Heeding my advice is paying attention to qualia, not of victims, but of the substantive reasons for being alive. Like who receives wise advice, or who is considerate when they are enjoying themselves, without making some kind of cruel commitment.

    3. CommentedS vd Niet

      Please quit the attempt to capture people in terms of statistics.

      We can't simply treat people with diabetes as 'guilty until proven innocent' because the majority of people with diabetes allegedly have the disease due to their own behaviour. As a reminder, the opposite is our default presumption in court.

      And, more importantly, if you want a realistic breakdown, you will find myriad causes of the diseases for every individual (e.g. natural dispositions, behaviour, in turn heavily influenced by the way he was raised, and why not blame society that offers him $1-junkfood). In fact, to come up with a realistic breakdown is all but impossible.

      So it's no good to cook up an ethical code of conduct with statistics, so as to 'incentivize' people to behave accordingly. Instead, I agree with Larry Chu: talk with(!) them. Appeal to reasons, not incentives.