Capable and revised
Friday, November 14 2008
This is a revision of an earlier post, because some people get too hung up on sex (“ewww”) to appreciate the main idea. The original post is still valid, but this should help clarify the essential ideas.
So, anyway. The question of a right to health care is related to another problem: our health care system ignores a lot of pretty ordinary rights that sick people ought to enjoy. Some folks assume sick people are demanding additional rights, when what we really want are the rights that everybody else enjoys. Privacy, for example, has been a big one, and so efforts like HIPAA and Patient’s Bill of Rights are worthy (but imperfect). More generally though, the sick person is often treated as if their illness can and should prevent them from enjoying their basic humanity. If you don’t know what I’m talking about, bear with me.
This isn’t another rights post – not exactly – but I want to point out one approach to rights, in which questions of rights begin with the question, what is a human? This approach has its roots in Aristotle, but more recently has been argued by Martha Nussbaum. In her essay, “Human Capabilities”, she argues that “the central goal of public planning should be the capabilities of citizens to perform various important functions”.
The sorts of things she has in mind are being able to live a normal lifespan, being able to move about, being able to obtain adequate nourishment and shelter, having opportunities for sexual satisfaction, being able to laugh, to play, to enjoy recreational activities. She draws a distinction between capabilities and functions; “can a person do it?” is a different question from “is the person doing it?” The problem is that too often we presume that because someone isn’t doing it means she can’t do it – especially when it comes to matters of women’s equality. If we assume a person can’t do something as a matter of biology or gender, we don’t have to worry about laws or rules or mores that keep them from doing it in practice.
But “can” and “is” are also a pretty important question, from the point of view of a chronically ill person. A lot of times, sick people are treated as if all other aspects of the patient’s life take a back seat to the illness. Maybe that makes sense for acute illness, but for the chronically ill person that can mean ignoring broad swathes of one’s humanity for years at a time. There are a lot of activities I have been told not to do, or not to worry about, only to discover much later that I could and should have been doing them all along – that I would have lived a much fuller, much more human life for having done it.
Nowhere is this more obvious than inside most hospitals. Hospital patients get saddled with a bunch of assumptions about what they can and can’t do. These assumptions aren’t always justified, and sometimes they’re counterproductive. For example, exercise: most hospitals aren’t designed with any area for patients to exercise, but exercise is an effective way to help prevent pneumonia and aid healing. So patients are left to walk endless circuits of their hall floor, which is tedious as it is uncomfortable (all those open doors – yikes). Or going outside: most hospitals have no provision for letting their patients get some fresh air and a little sunlight, even though sunlight has a proven effect on mood and regulating sleep cycles. These are just a couple of demonstrably counter-productive examples; there are a lot more that are unjustified, but more controversial. I have found – and I think most sick people will find – that time inside the hospital is a much more tolerable experience once I am willing to challenge some of these assumptions. Granted, some of them are necessary – but a lot are not, or at least flexible. That is, the more I’m able to assert myself and claim an identity beyond that imposed by the hospital, the less dehumanizing and demoralizing the experience is.
This, I think, is generally true of medicine as a whole: we are often told to accepts trade-offs in which biology takes precedence over our own notions of what makes for a meaningful life. If you’ve been told you absolutely have to take prednisone despite all the awful side effects, you know what I mean. I don’t think we should look to the medical community to change their priorities, but nor should we fear to live our lives in ways meaningful to us, by whatever standard we use. That means looking at our care and treatment in terms of the broad contours of our lives, and not narrowly focusing on biology. Of course, many lucky people will find the two aligned nearly perfectly – but that shouldn’t prevent others from their own good life. Ideally, our health care system would empower patients to exercise this kind of authority – but that would take systemic reform more ambitious than most people realize.
I’m not arguing that Nussbaum’s approach gives us the best understanding of rights. I do think it raises some interesting and difficult questions for the health care system in this country, and these are questions we ought to be asking. In a perfect world, our medical system would reflect and appreciate the diverse ideas in our society as to what constitutes a good, meaningful life. But we don’t live in that world. In the real world, sick people are too often treated as either biologic failures or raw commodities, with our essential humanity a secondary and distant concern. It’s left to us to insist that we be treated as ordinary humans, with everything that entails.
I think your posts are very valid. I chuckled at the sex post, but while thinking more about it, I remembered being in the hospital after my pregnancy ended with a stillborn baby and having my husband crawl up in bed with me. I had a single room and when the nurse came in she just apologized. Would that be appropriate in a double room? Probably not. Would any sick person benefit from a cuddle with a loved one? Absolutely!
I love your blog. Thanks for writing!
Ileana – I’m sorry for your loss, but I’m glad you got to cuddle. I can’t imagine not being allowed to cuddle under those circumstances. In a perfect world, anyone facing such an emotional blow would have a private room. Thanks for your comments.