Life as an Extreme Sport

Dax [August 16]

“No doctor is skilled enough to treat a man without his consent.”

This is an amazing experience. I’m not sure how else to categorize it. And for me, it’s intensely personal, as well. Pain management was nearly non-existent when Dax was injured, and has come forward leaps and bounds since the 1970s. And it is in large part through the activism of Dax and people like him that this has happened; awareness has increased to the point that those of us who suffer debilitating pain can receive the treatment we need, and can live relatively normal lives. I can’t imagine being asked to endure what Dax did, even for a day, and yet not only did he do it, but he emerged from it strong enough to continue arguing for the benefit of others.

I wondered in my last entry if Dax still felt the way he did the last time I’d read anything; that he still wished the doctors would have allowed him to die. After all, he has a successful life, a legal practice, a wife, friends. It took seven years for him to regain a quality of life he thought was worth living for, and that was simply too high a price to pay.

I can’t say I blame him. Sulfamonolode and wet to dry bandages aren’t used any more, considered too barbaric. And no wonder! A topical antiseptic across raw wounds that felt like pouring alcohol on or allowing bandages to dry and adhere to the wound to yank it off again. Debridement in a tank full of chlorox and water doesn’t sound fun, either; I wonder if they still use that? My one experience on a burn ward, during my pre-med days, there was actually a severely burned boy there; about 75% 3rd degree burns from a frat party gone wrong. He, at least, was being kept sedated and under wet wraps and this sort of…goop, for lack of better word, was covering his open wounds. Last I’d heard, he’d made a decent recovery.

Listening to what Dax had to go through, I am struck by the thought that, so often, what is done in medicine is not done with the best interest of the patient in mind. It’s done with the best interest of the health care professionals in mind, or the lawyers, or the hospital itself – but not the patient. The patient is simply there to endure whatever is being done to him or her, and even in this day and age there is so often no choice in what’s being done – being dismissed AMA is much harder than people make it sound like it is.

It also strikes me that Dax simply was not given the opportunity to communicate. Communication has been a recurrent theme this course, and this case is a consummate illustration of miscommunication.

Interestingly, Dax doesn’t think autonomy is a one-way street. He does feel that it’s two way, and that doc’s do not have a right to force treatment, just as patients don’t have the right to force doctors to perform procedures they don’t believe in. While, when I’m arguing for autonomy, I often find myself making similar argument, things like the controversy over the Plan B pill make me hesitate to throw my lot full in. If a woman desperately needs an abortion for, say, medical reasons, but the only person with any training for 100 miles has opted to no longer perform abortions, who is right? Whose autonomy reigns supreme? Autonomy might be a two-way street, but it’s still one where head-on collisions can and so often do occur. We really have got to move beyond autonomy as an answer; there is simply too much, too many situations, where it is not feasible, where it does not solve conflict.

He who controls the knowledge has power, and because of this Dax rather adamantly believes that doctors should not be the only ones with authority to perform certain procedures; they should not, in fact, control the knowledge. (And around here I’ve got scribbled in the margin that he has an excellent understanding of JS Mill, although of course I didn’t write down precisely what prompted that note.) It was, however, around here that Dax told his feeding tube story, and the joy in his voice as he talks about this, to this day, is amazing – and it’s because he had control.

Control is often an important issue for patients. They are in a situation without knowledge, where their body is out of their control, with doc’s operating on esoteric knowledge that, informed consent dreams aside, no patient can hope to immediately understand. As patient, you begin fighting for whatever you can control, in these situations – even if it is a small and simple thing. Not eating. Not having a feeding tube inserted.

As a person, then, in a place of both power and negotiating ability, it must be exceedingly important to remember to cede as much control as possible to the party who feels they are without (which, I would wager, is the patient the majority of the time).

The entire Dax case brings me back to wondering if informed consent is truly possible, and the old saw of whether or not you can truly give consent without having a medical degree? These days, especially, it seems like many doctors will just throw every possible amount of information and option at you, and leave you to figure out what to do – often with the aide of the ever-unreliable internet. I’m hearing more and more arguments against the idea, and that it’s simply a cop-out for doctors; I don’t know if I would go this far, but I do think it’s the sign of a litigious society that it’s such a major issue. Well, and I wonder if we shouldn’t coach it in terms of informed consent so much as proper information for consent.

I’m thankful I was able to thank Dax in person; as I’ve said, he’s someone who, stranger to me, has had a huge impact in the quality of my own life. I’m also glad I was able to clear up the misconception that I was Colleen; rather unpleasant to be confused for her, although given I was sitting behind her I understand why. But since I actually agree with most of what Dax says, and find myself squabbling over minutiae and splitting hairs (well, I’d argue that discussions of autonomy aren’t minutiae, but I will conceded that they are highly esoteric and not important to the everyday person), it was good to not have the association of “person with RSD” and “handicapped person” together.

Unfortunately, there are not a lot of answers in Dax’s presentation, as there are not in his case. The questions of autonomy, consent, and medical knowledge – they are still as much up in the air now as they ever were. Perhaps the difference is simply that they are indeed out in the air, being discussed and thought about, instead of not questioned at all.