Elizabeth Barrette (ysabetwordsmith) wrote,
Elizabeth Barrette

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Spectrum of Consent

If you have been reading and discussing the poems "When Someone Is Vulnerable" and "Through Weakness and Vulnerability," then you know they deal with issues of capacity and consent. One of the crucial references had gone offline, as noted in the second poem.

[personal profile] thnidu has saved the day by reminding me of the Wayback Machine, which had an archive of the page with the terrific discussion of impaired capacity and consent as existing along a spectrum. While the particular context was aimed at guarding the ethics of human research with regard to individuals with impaired or absent consent, it generalizes to other contexts in which important decisions must be made but someone has less than ordinary ability to do so.

Let's look at some examples from the article and discuss how those relate to Turq...

Decisional Impairment

* Situational vs. disorder-related impairment
(e.g. emergency room, “institutions,” vs. stroke)
* Global vs. specific impairment
(e.g. sedative overdose vs. paranoid psychosis)
* Static vs. progressive vs. episodic vs. time limited impairment
(e.g. severe mental retardation vs. Alzheimer’s disease vs. manic depressive disorder vs. TBI)
* Acute vs. persistent impairment
(e.g. stress, or hypoxia secondary to asthma or acute pain vs. mental retardation or autism)
* Universal
(e.g. therapeutic misconception, inadequate disclosure)

Situational aspects include being indoors, dealing with medical issues, and being around medical personnel. (Other authorities such as police are often triggers, but Turq has known Ansel long enough now that he usually doesn't freak just because Ansel is a cop.) Disorder-related impairment is Prolonged Duress Stress Syndrome and possibly other complications from Turq's extensive abuse and neglect. The former are triggers for the latter.

PDSD is a specific rather than a global impairment. It makes some things difficult or impossible, but has little or no effect on others. Turq seems fine with everyday tasks (eating, washing, toileting, dressing, etc.) so long as he has access to the resources. That he often does not is more due to poverty and discrimination than PDSD. The main impact of the PDSD is that he panics indoors, which is a huge (temporary) disability. But he has actually adapted amazingly well and managed to meet most of his needs outdoors.

PDSD is a long-term but variable problem, probably best described as "episodic" on the scale above. Turq has good days and bad days. The day in these two poems is not good, but he's survived worse such as the first encounter with Ansel. On good days, he makes pretty good decisions. On bad days, he has a lot more trouble thinking clearly. His ability to trust people or seek help is badly damaged, but he still understands the value of those things. So Turq does better with assisted decision-making than he would alone, even if it's uncomfortable for everyone, and he also does better than some other characters who are more aloof and/or hostile.

Turq's condition falls somewhere between acute and persistent. It is a long-term problem which has sharp spikes of increased impairment, but over time, his condition is improving because his environment is much better now and he has some support. So he is significantly impaired now, but not always to a high degree, and he will not always be this wrecked. This means that Turq needs support now so that he can make the best decisions feasible under the circumstances (which often won't be the best on the menu) and thereby heal enough that eventually he will not need more than average support. He does not need someone to take total or permanent control of his life, and after his awful experiences with bad foster parents and mad scientists, attempting too much control over him would be a disaster.

There are no universal impairments as Ansel and Ethan refrained from making technical errors in caregiving. It's just a bumpy ride because of Turq's PDSD and how that interacts with the current context to create an episode of acute distress. As if being stabbed by an attacker and then shredded by a reflexive teleport weren't bad enough. 0_o

Spectrum of Consent

Consent is not a pair of pigeonholes. It is a spectrum, with no ability on one end, impaired ability in the middle, and full ability on the far end. In this case, Turq has normal or near-normal ability to make many decisions, with increasing impairment as the triggers pile up. Medical decisions are going to be hard on him for a while.

Something the article does not discuss, but my poems do, is the role of supportive people in helping boost decision-making capacity. Ansel and Ethan weren't able to get Turq to where he could say yes to everything that would have been helpful, but they did shoulder him up enough that he could tolerate things he would not have been able to do without their support. A key goal of assisted decision-making is to help someone reach higher than they could alone. Aiming for a better decision and better outcomes is the result of that, but it's the underlying improvement in capacity that has the most important impact. Especially with a variable condition like Turq's, that kind of support helps him go through decisions and strengthen his mental muscles so that over time, he'll be able to take more of his own weight. Doesn't apply to static or progressive conditions, but does to anything which can heal.

Consent is also task specific. The factors discussed in the example include complexity, risk, and personal benefit. Notice that Turq has managed to tolerate some things that were unfun but still less bad then this incident. Sometimes he just needs a nudge, and Ansel is good at that. But there are specific areas where Turq has a great deal of difficulty right now, and his threshold of tolerance for anything medical is alarmingly low. In other areas like navigation, he's able to do things like find safe places to panhandle, even though he's not good at the begging part. His impairment clusters around the areas of greatest violation, and outside that, he's functional. Another very helpful thing Ansel has been doing is encouraging and supporting Turq in making his own decisions in those healthy areas, like choosing what to eat. The more practice Turq gets with normal things like that, the more that bolsters his recovery. He can use the parts that still work to shore up the ones that are limping.

Also on the above illustration is the ability to appoint someone else as proxy. That's what Ethan was fishing for right at the beginning: with Turq unconscious, did he have anyone else listed as proxy or had he stated any advance directives? Those are ways of ferreting out what someone would want when they can't say so. Turq is still too messed up to be explicit about this yet, but his ongoing relationship with Ansel carries a lot of implicit trust. Once Turq woke up, he was terrified of the situation but not for instance thinking that Ansel meant him harm. So Turq was panicky and balky, but not combative and also not issuing a blanket refusal. He was, clumsily and painfully, able to tolerate some amount of Ansel and Ethan making decisions for him earlier and walking him through the pros and cons of later decisions after he woke up. The real questions are whether either of them will be able to get more preferences out of Turq later and/or whether he'll let them help the next time he needs it. Those are the determining lines in whether he accepts their decisions.

Here's a little triangle diagram that includes identification of vulnerable parties. T-America does much better at this than L-America does. It only took Ansel a couple of minutes after making direct contact with Turq to figure out that something traumatic had happened to him (beyond the fact that Turq was then coughing up his lungs) and engage trauma-informed care. It wasn't enough to keep Turq from lashing out the last time Ansel went too far, but was enough to impress on Turq that Ansel was trying not to hurt him. And that became the seed of what has grown into a very promising relationship. Similarly, Ethan recognized the issues from Ansel's summary and Turq's symptoms, and handled Turq as gently as possible. A whole handful of other folks in Bluehill have also recognized Turq as some kind of trauma survivor, and made allowances accordingly. This doesn't mean vulnerable parties never get abused, as Turq did earlier, but rather the mesh is finer and statistically speaking over time people do tend to spot and help them.

Now let's look at the risk-benefit analysis. Like consent, benefit exists on a spectrum. Things can provide no benefit, some benefit, or great benefit. They can also have a low chance of benefit, moderate, or high. Medical care, if effective, can provide excellent benefits. That's why Ansel and Ethan did everything they could to raise Turq's tolerance for it. This is different from trying to force something to do something you think is a good idea, without caring how they feel about it -- which is ruinous to people with PDSD and bad for anyone. Conversely, it is vital to remember that some things don't work as well for soups as for ordinary people, or at least, require different methods or medications to solve the same problem. Fluid replacement is high benefit and highly effective. A blanket is moderate benefit and highly effective. Petting is variable.

Likewise, harm and risk can be imagined in incremental or spectral ranges. What is the amount of harm that could result? What is the percentage chance that actual problems will manifest? Here it is necessary to consider, again, that mental conditions or superpower status may complicate or even contraindicate things which would be helpful to other people. Fluid replacement is typically a low-risk treatment; for Turq (and consequently, his caregivers) the risk is considerably higher due to past medical abuse.

Here's a spectrum of protection that shows who has influence over what happens. It has the patient at one end, and another party at the other. In the middle is assisted decision-making or some other form of shared influence and responsibility. Turq spends a lot of time somewhere in the middle, but is panicky about going to the end where someone else has authority over him. Historically the latter hasn't gone well for him most of the time. But remember, most people don't make decisions alone even though they may have the right to do so. The bigger the decision or the smaller their familiarity with the subject area, the more likely people are to seek advice or delegate a decision. People who've had good experiences with doctors often delegate most or all their health decisions to their doctor, betting that trained judgement will outclass their own. Ansel does this routinely and rarely quibbles. That used to be fine but no longer is; he needs to put up some defenses due to his soup status, and is very lucky that Ethan knew to warn him of that.

This spectrum shows approvability, that is, how justifiable it is to do something. The lower the risk, the higher the benefit, the more approvable something is. Higher risk and/or lower benefit reduce the approvability. This can vary considerably for different people, and especially, between soup and nary. In regard to the fluid replacement example, notice Ethan's very explicit steps in walking Turq through the advantages, accepting Turq's input, and then adjusting the threshold at which that treatment's benefit outweighs its risk for this individual. "Almost bled to death" is definitely justified, even though it threw Turq into a panic -- he probably would've lost some brain cells due to sluggish circulation without it -- whereas overheating would be "try really hard to sink the temperature with ice first." With that information in hand, Turq was able to flounder his way to approving emergency-only use; he hates it, but is willing to tolerate it to avoid something worse like brain damage. A blanket has nearly no risk, aside from the small chance of tangling in it, and thus is an excellent choice. Petting is variable, and Ansel did his best to negotiate that verbally and nonverbally to the extent of Turq's ability to process the conversation and communicate his own needs. There will be times when Turq needs touch and may not be able to ask for it; or can't bear touch and may not be able to articulate that; so those impairments put more weight on Ansel's skill at interpreting both body language and whatever words Turq can get out. You can also see Ethan specifically prompting Turq with two preferred stop signals (say no or push him away) before ruling out one (don't hit). And that kind of teaching in the moment is one reason why T-America has a much lower rate of assault on medics: they give people better options. Mindless flailing in pain or panic still causes injuries to caregivers, but there is a lot less hitting because some idiot wouldn't listen or the patient didn't know how to stop them if necessary.

So that's how responsible first responders navigate first an unconscious patient and then one with impaired consent as they try to balance his physical and psychological needs. They may not always extrapolate correctly, but the principles and the processes are sound.  Here is a handbook about assisted decision-making.

And just as a personal example: I suck at math. Therefore I delegate important math to someone who is actually good at it, so that it will generally get done right. Things like taxes and balancing checkbooks need to be accurate. For minor things, I do it myself, and I have some tricks to compensate somewhat for the anti-knack. It's good practice, and if I screw up, the damage is small and can usually be fixed. You may have seen me goof on a price or line count in the poetry fishbowl; it's easily fixed by saying "Writer can't count, here is the accurate number and you get a discount or a refund." When it's my mistake, I typically fix it in the customer's favor. I carry money in amounts that I can handle. If I miscount, it's unlikely to be worse than frustrating or embarrassing.  While I have the right to do all of my own finances and other math, I choose not to.  Most of the time I do okay as long as I respect the limits of the brain I am wearing. Choosing to ignore those limits tends to produce a failure rate higher than I consider acceptable. I have been saying this since about the time I started school, and especially, in junior high and high school. I married into the damn math like I damn well said I would, so there. Nyah.
Tags: fantasy, fishbowl, how to, poetry, reading, safety, writing
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