Sharon May 7th, 2008
The idea that we might for an extended crisis be effectively on our own is something that gets you one of two reactions. 1. “OMG! I’d better do something about this” or 2. “Yeah, it’ll never happen”. Now not everyone has the same reaction time. I completely ignored Y2K, never bought any plastic sheeting or duct tape after 9/11, and was too young for the duck and cover drills.
Now for a long time the “It’ll never happen” folks had the majority - but that may be coming to an end. After all, there’s something about seeing your own military blocking people trying to walk out of New Orleans and folks screaming for help in the superdome while the government serenely ignores them that does point up the “maybe we should have a plan” idea.
I’ve seen this myself, as people move from thinking “Sharon’s that whack-job apocalyptic nut” to “Well, she may be a whack-job apocalyptic nut, but she’s kinda right about some stuff…” ;-).
Here’s a new bit of news on this subject. From the Medical Journal _Chest_ comes a study that tries to deal with the hard questions of how to allocate scarce resources in a time of epidemic or other large scale medical crisis. There’s an AP summary here as well. And let’s just say that it didn’t precisely make my day to know that when there are difficulties with allocation of scarce resources, those with “severe mental impairment” (which is not clearly defined in the study or the article) will be on the list of people to be denied treatment, since my eldest son pretty clearly fits that definition.
There rest of the list includes:
_People older than 85.
_Those with severe trauma, which could include critical injuries from car crashes and shootings.
_Severely burned patients older than 60.
_Those with severe mental impairment, which could include advanced Alzheimer’s disease.
_Those with a severe chronic disease, such as advanced heart failure, lung disease or poorly controlled diabetes.
Now first off, I’d like say that I think that the project of triage is necessary, and unpleasant, and it is probably good that guidelines are being established. I’m not demonizing this one report, or the doctors that made it. I’m also aware that Eli would have to be very sick and have a high likelihood of death before this protocol was even relevant…probably.
Let’s be clear - this report does not say they would deny treatment to anyone with the above conditions, but that a combination of these conditions and a high likelihood of death already would cause triaging. The reason I am concerned here, besides my personal investment, is that triage sometimes has to move down the chain - that is, a plan that carefully limits rationing works only when there still remain substantial supplies. If supply chains tighten further, then you have to ration more stringently - and a set of guidelines for rationing that starts the process are likely to continue being part of the reasoning as rationing gets tighter. So, for example, if mid-way through a crisis supplies begin to be limited, the above parameters are implemented. But when supplies get really tight there has to be a mechanism for deciding how what remains gets allocated - and if we’ve already downgraded the elderly, mentally disabled and chronically ill, that does point out the next move.
The unfortunate truth is that you end up triaging one way or another - that is, if you have a limited supply of medical resources and no certainty that you will be resupplied, you can use them all up on early arrivals, and thus triage by when you show up, or you can find some other way to ration. Just because I’m fairly horrified by the idea that in a pandemic or other widespread medical crisis my kid might not be treated doesn’t mean that I think that the doctors doing this aren’t trying to address a difficult concern.
All of us may be doing some ugly triage at some point or another, as we sort out what resources in our communities are salvageable. There is no way not to sort things out when there are limits on resources - one way or another, when needed items are scarce, you make choices about how to use them. We often imagine that unconsciously going forward and using things up until they run out isn’t a form of triage, but, of course it is - and usually an inequitable one. The reality is that rationing of some sort is almost always a better solution than not rationing, when you run into absolute scarcity. And sometimes, the choices will be bad - there will be no way to make one without hurting someone.
So I don’t think that this report is fundamentally a bad thing. We do need a triage plan. But we also need to fill in some steps before triage, and make sure those who have to implement strategies know when to go to triage, and when not to.
You see, the problem with applications like this is that they do get complicated. And in the heat of things, complexity tends to fall by the wayside. Medical studies have suggested that this is quite common, for example, that thousands of medical deaths are caused each year simply because in the heat of things, it is difficult for doctors and nurses to remember to do every single necessary step to minimize risk. Doctors and nurses are human beings, and make ordinary human errors.
So a fairly complex way of sorting people out (evaluating both their likelihood of death and their quality of life/lifespan, giving each a score and then having a designated person make a decision) has a solid chance of going wrong when the crisis occurs when the designated person is not there, the chart is buried in the wrong office and no one has the key and the person who went through the training once six years ago has to make the decisions. And it would be pretty easy for those decisions to translate, in a crisis to: we don’t have any resources for the elderly, sick, disabled or mentally impaired, or for triage protocols to be implemented before they are necessary.
And, of course, because the poor are more likely to fall into many of these categories, they are likely to be disproportionately allowed to die in such a crisis. This is largely because of our present system of health care rationing, which sorts us out by ability to pay. That is, people who are already being rationed out of care will then be penalized for this. I think it is worth noting that those who are most likely to be victims don’t look just like my middle class, white kid. Heck, I could probably fake it if he were sick enough, and lie about his situation. But it is harder to lie to doctors about your diabetes, your cancer, your skin color or to conceal your or your child’s obvious severe disability.
This protocol may or may not become part of the SOP at hospitals around the nation. But there’s a good chance that at some point, some kind of triage protocol will be implemented, and some sad, horrible choices will be made. It is even possible that such a protocol will never be misused - that good choices always will be made honorably. But it is also possible that they will not. The truth is that we ration right now by ability to pay - and that the people we ration to tend not to be very politically powerful. So maybe, just maybe we have to be very, very careful about the assumptions we are nurturing under the auspices of preparedness.
This is also a reminder (in case we needed one) that rather than prepare and adapt for oncoming crises, our society tends to choose the easiest ways to mitigate potential harm, rather than the most comprehensive ones. Despite years of awareness of the possibility of epidemics or widespread disaster, it is always easier to claim that no one could have forseen this, and to under-prepare. It is always easier to let the most vulnerable people in a society slide - they don’t protest very loudly in many cases. It is easier to let the levees crumble than to allocate money to protect mostly very poor and very black people. It is easier to talk about rationing for the disabled and elderly in a crisis than to come up with a plan for ensuring their needs are met.
Thus Hurricane Katrina became the ultimate expression of who we value: “Own a private car, or die…oh, and it is just a coincidence that you aren’t white…” In a sense, I give this report credit - it at least opens up discussion and analysis of who we value, rather than leaving it unspoken, but just as deadly. But I also recognize the risk of sending messages about who we value that get twisted into much more explicit, even more troubling messages. The triage protocol may be necessary - but it is also necessary to ask “are we doing everything we can to ensure that this protocol’s use will be minimized?” In this case, we are not. US preparedness for medical disaster is woefully inadequate.
I think this document represents another expression of who we value in a society. For those of us who value lives differently, who do our own calculations in different ways, it is a reminder that again, we may be on our own. There may be no point in rushing Grandma to a hospital in a crisis, if she will be refused treatment. Those of us with vulnerable family and friends may need to do more to ensure that they don’t become sick in the first place, or that plans exist for their support. We may need to create community structures for the care of those who would be turned away who don’t have family to care for them.
More important, for all that it is necessary to have triage strategies, it is worth noting that the scale of the disaster depends on our prior expressions of what and who we value. That is, it is far less likely that this kind of ugly triage will have to ever occur if we actually allocate adequate resources both to preventatives and to responses. It is true, as the report notes, that the idea of unlimited resupply is impossible. It is not true that hospitals couldn’t have a greater degree of preparedness, larger stockpiles and, perhaps, plans for hospice care and community based care of those they cannot serve.
There is often a tendency in a crisis to jump far too rapidly to the idea of triaging. And it certainly is a balancing act, a difficult set of choices, and waiting too long is potentially disastrous too. But too often, I see people who understand the crisis we face assuming that we must give up on the hope of addressing injustices, or for caring for certain people. The idea is that crisis comes and we’re immediately reduced to a world in which every choice is life or death - that is, we are immediately thrust into the world in which a bite of food shared condemns me to death, we are immediately transformed into a world where we are sered of such lofty goals as justice or the protection of the weak, and we enter into a blind struggle for survival.
The problem is that even in great exigency, the world is more complicated than that. And the problem of seeing a coming scarcity in a world of great abundance is that you sometimes miss the fact that there’s still enough abundance to allow for a less urgent, less scarce view of the world. That is, we are, in the rich world, still a long way away from the struggle for survival. To give up on our struggle to protect the weak along with the strong would be premature - easier, yes, but wrong. And it is still within our powers to create a low energy society that never requires much of that sort of ugly triage - if we choose to prioritize the resources.
But this is also an important reminder - the priorities of institutions and governments are not my priorities. If I want to be sure that my family and those I care about are cared for, I must rely on *my* priorities, allocating what resources I can as I see fit. This is true on a personal level - that is, I should prepare specifically to care for my son at home in a crisis (actually, the point may be kind of moot, since my local hospital would be completely overwhelmed and I should prepare to care for all my family at home), and that I should be looking about my community for those who are likely to fall through the cracks.