We torture people before they die.
How that’s not the opening quote in Jonathan Rauch’s “How Not To Die” (The Atlantic, May 2013), I have no idea, but he gets there soon enough. Aretha Delight Davis is the speaker of this quote, and she’s even more direct than her husband, Dr. Angelo Volandes, who is working on a means of disrupting the current late-care medical treatment system through clearly narrated videos that show patients (and their families) exactly what doctors mean when they present complicated treatment options. “In the absence of complete information, individuals frequently opt for procedures they would not otherwise choose,” reads a study by Benjamin Moulton and Jaime S. King in The Journal of Law, Medicine & Ethics (all citations are from The Atlantic‘s article); according to Rauch, whose father suffered “an advanced and untreatable neurological condition,” knows all about this, about the way that “The Conversation happens less regularly than it should, and that, when it does happen, information is typically presented in a brisk, jargony way that patients and families don’t really understand.” Above all else that’s wrong with the medical system, this may be the worst: this is one of the most critical commercial services out there, and yet we understand so much less about it than anything else we purchase, and thereby trust doctors — who sometimes have ulterior motives, however laced with good intentions they may be — far beyond any rational decision-making point. It’s the same thing I see on Monday Mornings, another giddy David E. Kelly show about ethics (as with Boston Legal before it); yes, you will die without this treatment. With it, however, you may still die, may suffer extremely, may lose part of your brain (the very part that defines your personal identity), and, assuming everything works, may only extend your life by a short term. (And we haven’t even talked about the monetary costs yet.)
This article is not about death panels, and it’s not about throwing one’s hands up in the air and saying, “Oh, they’ve lived a good life.” It’s about ensuring that everybody has the ability to make an informed decision, without clouded talk of miracles, best-case scenarios, and a live-at-any-costs determination. People sometimes ask me what the point of theater is, well, go see Wit, see the scene involving a patient’s DNR (Do Not Resuscitate) order being ignored, and tell me that you should always listen to your doctor. All that Dr. Volandes wants to do, apparently, is to make sure that patients get to watch a ten-minute video (the first one he’s working with has to do with the treatment of those with late-stage dementia): not a high-budget production, but a no-nonsense, documentary-style approach that isn’t meant to sway the viewer in either direction so much as it is to make sure they understand what their quality of life will be — what it means to live without the ability to breath for oneself, or with advanced paralysis, or once your memory has left the building. (The majority of my memories of my grandfather are of him in late-stage Alzheimer’s. I can make a better decision as to how I would want to be treated should that ever happen to me.)
You’d think this would be a simple proposal to implement in hospitals; if Volandes’s motives were called into question, you could just put together an agreed-upon impartial panel to make this instructional video. After all, we watch training videos when we’re called to jury duty, another place where we make less-informed decisions about other people’s well-being; would it be so outrageous to see a few examples of the treatments themselves? After all, if you ask me if I want to live or die, I’m going to say live, but if you ask me if I want to live in constant pain for the rest of my life, after a six-part surgery in which two of my limbs will be removed and a catheter will be permanently inserted into my body, I might not be so hasty. (Then again, I might; it must be my choice. It must also be an informed choice.)
Unwanted treatment is a particularly confounding problem because it is not a product of malevolence but a by-product of two strengths of American medical culture: the system’s determination to save lives, and its technological virtuosity.
Although this is a battle that has no outright enemy, it’s apparently still difficult to find allies: Volandes is offering change, and people are, in general, resistant to change (especially when money is involved in this unfortunately capitalistic enterprise). “Anyone who questions medical maximalism risks being attacked for trying to kill grandma–all the more so if he mentions saving money. For all its talk of making the health-care system more rational and less expensive, the political system is still not ready for an honest discussion.” Though his videos are only seven minutes long, meant for iPad viewing, they’re not routinely used–only a few dozen hospitals (out of more than 5,700) have them, according to Rauch’s article. This, despite (or because of) the evidence from a clinical trial that he ran in which patients were either given a verbal description of advanced dementia or shown his video, in which over 20% more (86 to 64) were likely to choose comfort care–perhaps medicine, like politics, needs us to remain stupid in order for it to remain profitable. As we’ve seen with deadlocked policies or larded bills, that’s not a healthy system.
So consider this Atlantic article the first Conversation about The Conversation. Now, perhaps, you can make a more informed decision on whether you’d like to make an informed decision on your late-stage medical care; after all, it’s the unknown unknowns that’ll get you, if you let ’em.