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So today, we've got Dr. Mackenzie, Graham. Mackenzie is a senior research fellow at the centre and the welcomes in the ethics and Humanities.

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And of course, he's also a Uehiro alumni. He's currently part of the National Consortium of Intelligent Medical Imaging,

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investigating ethical issues arising from the collection, storage and sharing of digitised medical images.

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And that project is aiming to facilitate the ethical integration of A.I. enhanced clinical imaging into medical practise.

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And that project is still in its early stages. And so we're not going to hear about that now.

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Keep in mind, in case you were interested in that kind of thing, Mackenzie is working on that.

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But today we're going to hear about choosing now for later, precedent,

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autonomy and problem of surrogate decision making after severe brain injury. Take it away

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Mackenzie. Great. OK. Thanks, Dad. Yeah.

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So my name's Mackenzie. So today I'm going to talk a little bit about a group of patients with disorders of consciousness.

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So it's a if any of you have heard me speak before, you've probably heard a little bit about these patients.

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Kind of my previous research before I started doing stuff with AI was on these patients

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and I was interested in questions of understanding well-being in these patients.

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So this is a little bit different kind of project, which is sort of in its middle stages.

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We'll call it. So I'm interested in how we are to make decisions on behalf of these patients in kind of the weeks,

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the days, weeks and months just after their injury.

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So there's kind of a standard way that we approach these sorts of problems, which I'll talk about can be early going.

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And then I'll explain why. I think that is the standard approach has some problems, especially as it pertains to patients like this,

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I'll use them as kind of a heated theme to illustrate what I take to be some weaknesses in the standard view.

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And then I'll try and sketch out a bit of a way forward for how.

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How we can make decisions on behalf of these patients. So we'll get started with a case.

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That's a good place to start. OK, so Frieda is a 32 year old female.

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She suffered a severe traumatic brain injury when she was struck by a motor vehicle while riding a bicycle.

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So she's rushed to the hospital.  And her condition is stabilised by emergency physician, but she remains in a coma for about five days.

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You see, this is clearly a pre COVID kind of ICU.

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So her husband is acting as her surrogate decision maker and he's informed by her neurologist that her prognosis is uncertain.

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But the husband elects to continue life sustaining treatment because we are still kind of in the early going.

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So after about two months, Freeda has emerged from a coma. And unfortunately, she's diagnosed as having unresponsive wakefulness syndrome.

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This is also referred to as a vegetative state.

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So Frieda's not showing any evidence of awareness of herself or her environment during a bedside examination.

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So when doctors ask her to sort of follow up penlight with her,

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whether eyes or wiggle her toes or squeeze her fingers to command, she's not able to do any of this.

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So she's able to sort of move reflexively, but she's not able to do any kind of voluntary movement.

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She doesn't appear to understand language or anything like that.

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However, an EEG has detected a P300 signal in response to a recording of her voice.

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when you play recording of her voice beside her, we see a little a little bit of a brain signal.

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And this in the past is found to be predictive of recovery in our post-traumatic vegetative state.

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So there's some indication that maybe she'll make a recovery. But other than that, things aren't looking very good.

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So at this stage, after her injury, so this is sort of two months after her accident, it remains unclear to what extent Frieda might actually recover.

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So on the one hand, her husband believes that she wouldn't want to continue living in a severely disabled state like this.

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And he thinks this because she often talked about her grandmother's decline in the later

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stages of dementia and how she wouldn't want to live in a severely disabled state like this.

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So the husband thinks well actually maybe the best thing to do for her is to withdraw her from treatment.

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Her parents, on the other hand, believe that there's a reasonable chance of a meaningful recovery even still,

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and that with the right support Frieda could have an acceptable quality of life, even in a pretty severely disabled state.

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However, no one is really sure how to proceed.

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So sadly, this is, I think, a pretty indicative case for these kinds of patients.

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Things are often very uncertain for quite a long time until the patient sort of declares themselves.

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You might say.

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So It might take weeks, weeks or months, several months before we really get a clear sense of what we can expect from the patient in terms of recovery.

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But families have to make very difficult decisions on the basis of not a lot of evidence.

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And obviously, because these are oftentimes life or death decisions can be very difficult.

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So these are the kinds of patients I want to talk about today.

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But first, we'll do a little bit of background in disorders of consciousness just to kind of sit this here.

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So this is just kind of a basic diagram of how different disorders of consciousness can kind of be arranged along these three sorts of scales.

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So it's a collection of syndromes, disorders of consciousness that are kind of transitory.

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So typically you move from whom might need to [inaudible]  And then make a full recovery.

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Not usually. But when you do make a full recovery, kind of move through these stages.

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And after about four weeks, it's considered a prolonged disorder of consciousness.

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So the way we diagnose these disorders is that usually with a bedside behavioural tests.

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So we'll ask a patient to follow commands. So we'll say it's you can not understand what I'm saying.

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Wiggle your wiggle your toes or move your move your fingers.

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We'll ask you asking you turn to turn your head in a certain way or things like that.

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So patients in a coma down here in the bottom left of the laser pointer right here in a coma.

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You can see are not aware and they're not awake and they don't move.

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So these are patients eyes are closed, completely unaware of what's going on around them.

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So they're kind of at zero on the wakefulness scale. The awareness scale and the motor behaviour scale. VS patients.

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So this is the state that we think Frieda from the example is in.

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She is awake, so her eyes are open and these patients go through kind of sleeping, waking cycles.

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But they're not aware of anything that's going on around them. So they're kind of at zero in the awareness scale.

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And also, they don't they don't move kind of voluntarily.

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So we will sometimes see kind of reflexive movements from these patients, but they don't exhibit sort of voluntary motor behaviour.

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In about 2002, this was first this condition was first discovered and kind of in the 1970s.

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And then in about 2002, physicians started distinguishing between VS patients and MCS patients.

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So these are patients you can see are also awake and they go through intermittent kind of stages of awareness.

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So sometimes they're able to follow commands and sometimes they're able to, as you can see, also move volitionally, but sometimes they can't.

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It kind of depends on when the assessment takes place.

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If we're able to diagnose someone as MCS, so MC.S. plus and, M.CS. minus relates to whether the patient can actually communicate or not.

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And then we see up at the very top is full consciousness. So like you and I, we're fully awake.

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We're fully aware and capable of volitional motor behaviour.

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So the patients I'm going to talk about today are these patients, CND patients.

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So only recently have these patients even begun to be recognised because it's very difficult to tell the difference between a CND patient and a VS

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patient. So these patients are awake. And as it turns out, they are aware.

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But because they don't exhibit any motor behaviour,

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it's very difficult to tell the difference between these two using only kind of behavioural scale.

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So, as they say, it's very difficult to to diagnose kind of NCS or CND.

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So about 40 percent of the time someone is diagnosed as being in a VS.

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This is a misdiagnosis. So we do the behavioural assessment.

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We think OK so this patient's totally not responsive if we reassess them.

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You know, a few days later, sometimes we end up getting them at a period where they're a little bit more aware.

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And then we're able to see that actually this patient is a NCS. So it's quite difficult to to get this right.

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So right. So this is usually done on the basis of a bed side assessment.

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And as I say, these are these are not perfect measures,

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but even amongst patients that are repeatedly diagnosed as being in the V.S. using these behavioural scales,

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studies have shown over the last decade or so, 10,

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15 years, have shown that about 15 percent, actually probably about 15 to 17 percent now of patients who repeatedly satisfy all of

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the diagnostic diagnostic criteria for being in a vegetative state are actually aware.

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So are actually CMD we would now call them. So the first kind of landmark study that showed this was in 2006 by Adrian Owen and colleagues.

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This was at Cambridge University. Now he's at the University of Western Ontario.

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So for those of you who are familiar with this research, basically what what they did was they put these patients in a FMRI scanner.

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So these patients had been repeatedly diagnosed as VS. They were put in an F MRI scanner and asked to imagine performing certain tasks.

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when instructed to do so. So here we can see kind of.

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An image of a healthy person's brain. Had sort of the normal shape, and this is one of the patients that suffered a traumatic brain injury.

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You can see there where the trauma occurred.

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So what they were asked to do was once they were in the in the scanner, asked to imagine playing tennis when they heard the word imagine.

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So we had healthy controls. When we ask someone to imagine playing tennis, we see activation the supplementary motor area right here.

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And if we if a patient was truly unconscious, we would expect to see nothing.

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But in about 50 percent of patients, as it turns out, we see very similar activation to an healthy participant.

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So they would ask them to imagine playing tennis for about 30 seconds. So you can do this for yourself.

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It requires a fair amount of focus to kind of sustain your attention on this particular task for that amount of time.

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So we would ask them to play. Imagine playing tennis for 30 seconds. Then they relax.

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And then the activation will go away. And they'd ask for then to imagine to play tennis again, the brain light up again.

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Tell them to relax. So they would do this kind of blocks of five.

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So the odds of this happening sort of just by chance, I would say, were slim to none.

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Especially with sort of repeat repeat scanning. So they in addition to the tennis task,

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they also ask them to imagine walking around a familiar room in their house or sort of walking around the streets of their neighbourhood.

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And this activates a whole network of brain areas in a healthy control.

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As we can see, a similar network within some patients that are diagnosis vegetated.

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So patients fitting this profile so behaviourally nonresponsive,

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yet able to demonstrate evidence of awareness and command following are called cognitive.

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That are said to have cognitive motive association. So they're aware, but they don't display any kind of motor behaviour.

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So these patients can encompass sort of a wide range of capacities.

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We know that they possess certain cognitive capacities just as an inference from what it would take to do kind of mental imagery task.

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So we know that they can understand language. We know that they're capable of sustaining their attention certain way.

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We know they have some degree of working memory because you remember the instructions and then carry them out.

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They have some degree of response selection so they can decide what to think about if you ask them to imagine playing tennis.

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They could have imagined something else, but they chose to imagine playing tennis. And a subset of patients.

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So a subset of this 15 percent has actually been able to use the mental imagery task to communicate as well.

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So in a paper in 2010 by Martin Montie and colleagues,

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they asked one of the patients who was really good at command following a series of yes or no questions.

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So they would ask him, is your name X? And the answer is yes.

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Imagine playing tennis. And if the answer is no. Imagine walking through your house.

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And so he was able to do this, use mental energy to communicate in kind of this basic.

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sort of way. So on the left, here is Scott Rally.

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And he was one of the kind of the first communicators using mental imagery.

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And on the right is Jeff Trombley. He was the first one to demonstrate awareness to the movie task, which I'll talk about a little bit later.

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So today, the vast majority of patients who have been able to demonstrate covert awareness have have had been what we would call chronic.

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Chronic disorders of consciousness. So it's only after several months or in that Scott's case,

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several years of being in what was considered a vegetative state, that they were able to demonstrate their awareness.

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So these patients were, as a general rule, physiologically stable.

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They were living in launch long term care or living at home with family members.

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So at this time, months or years after their injury, further recovery was pretty unlikely, although not necessarily impossible.

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There have been a handful of cases where someone has made a full recovery even after being in a vegetative state for for several months.

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But importantly for this discussion at this kind of chronic stage, end of life,

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kind of decisions tend not to be at the forefront for surrogate decision makers.

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So decisions about whether we're going to pursue aggressive treatment, such as brain surgery or whether going to war,

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whether we're going to insert a trick he asked me to or whether we're going to insert feeding tubes or things like that.

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These decisions are made kind of within the first 10 days of the first two weeks after injury.

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So for chronic patients like Jeff and Scott,

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the discovery of covert awareness probably wasn't going to make a huge difference to treatment decisions.

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Obviously, it's going to be important for lots of other reasons having to do with how we understand the welfare of these patients.

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But as far as treatment decisions, it probably doesn't make a huge difference. And so, not surprisingly,

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kind of discussions about whether we would whether these patients would now be withdrawn

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from treatment or whether this provided kind of a further motivation to keep them alive.

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This is sort of not at the forefront for for surrogate decision makers kind of at this stage.

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However, it is at the forefront of thinking for patients and families in the acute stages after brain injury.

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So just the idea that potentially 15 percent of patients that are diagnosed as agitated might actually kind of covertly aware.

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That really complicates surrogate decision making.

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So, as I mentioned before, the potential for recovery within disorders of consciousness decline's kind of over time.

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So after a traumatic brain injury, it's very, very unlikely that a patient's going to recover consciousness 12 months after their injury.

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And for an anoxic brain injury, it's very, very uncommon for them to recover consciousness.

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Three months after the brain injury, but, of course, waiting this amount of time for things to become a bit more certain.

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It also eliminates certain kinds of treatment decisions that you might make.

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So usually withdrawal decisions are made kind of within the first few days.

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I think one study suggested that after brain injury, I think it was 50 percent of.

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Patients that were withdrawn were withdrawn within the first 72 hours.

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So usually these decisions are made quite early when things are very uncertain because we just don't

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know how these patients are going to do and kind of what their trajectory for recovery is going to be.

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And now when you throw into the mix this idea that, well, 50 percent of these patients might actually be conscious already or 50 percent

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of patients who appear to lack consciousness might actually be conscious.

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You can see how this would complicate decision making for surrogate decision makers.

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So, unfortunately, functional neuro imaging to detect over to where this is not sort of widely available right now.

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It only occurs at a handful of research institutions around the world.

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So this is not something that is accessible at kind of the typical hospital.

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So right now, it's only accessible in a research context.

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I'm part of that's due to sort of the expertise that's required to administer these kinds of tests and interpret the results.

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Part of it is due to just the lack of availability of MRI.

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So research, great f MRI, a potential resolution to this latter concern, as is the use of EEG and F years.

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That's electro Ancef, several graphy and functional near Infra-Red spectroscopy.

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These are other ways that we can assess consciousness so we can do kind of mental imagery with these other modalities.

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And these are portable. So these can be done at the bedside. So reduce the risk of moving patients around and and putting them in the scanner.

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So potentially using your imaging to assess COGAT awareness might become more widespread in the near future.

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But it was only in twenty eighteen that the American Academy of Neurology updated its practise guidelines and said

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that using functional MRI imaging was appropriate method of assessing the kind of Kovar awareness in patients.

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So prior to then, this was not something that they that they recommended doing.

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And now it's acceptable to do when there is kind of ambiguity with behavioural tests.

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So there's still a little bit of scepticism still about making this kind of a standard part of a diagnosis for these patients.

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But there's reason to think that it might become more spread, more widespread in the near future.

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But it's important to remember that oftentimes functionally imaging is going to return a negative finding.

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So, as I said, about 50 percent of patients that are scanned are able to demonstrate Kober awareness.

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That means that what? Eighty five percent don't demonstrate any evidence of covert awareness.

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However, that doesn't mean that they are conscious. It just means that they weren't able to do make a living.

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So it is possible that a patient could still be conscious, but they just weren't able to do the task.

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Because as it turns out, less than one hundred percent of healthy undergraduates aren't able to do mental imagery.

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So maybe that means that they are actually conscious. But more likely, it means that sometimes we get false negatives using this kind of test.

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OK, so the big question here that I want to talk about today, how should surrogates make decisions on behalf of behaviourally nonresponsive patients?

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So given that there is this uncertain trajectory and given that some patients might be covertly aware,

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but we don't know which ones they are, we really don't have a good sense of what life is like for these kinds of patients.

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They could be suffering.

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It could be that they may turn out to live an acceptable life if we just sort of give them enough time to declare themselves and keep them alive.

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Or maybe, like I say, they are experiencing sort of profound suffering.

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So given all of this uncertainty, what what should surrogate decision makers do?

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It's a difficult question. We'll try and get a bit of clarity.

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OK. So the standard view of surrogate decisions being adopted in sort of most legal statute uses a hierarchical framework.

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So the first thing that one ought to do as a surrogate decision maker is appeal to any advanced directives that exist.

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So when a formerly competent patient expresses a clear preference for or against a certain intervention.

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And they articulate this, an advance directive, the surrogate.

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Basically, all they have to do is see that his preferences is here to as much as possible.

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So if I write out I don't want one, under no circumstances do I want the tracheostomy,

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then my surrogate decision maker just needs to say, well, we don't we don't want to do that one.

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When the physician asks, should be, should we kind of go down that road?

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In many cases, however, there is no advance directive. People don't tend to write advance directives that often.

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So when no advance directive exists, the task of the surrogate is to make a substitute judgement on their behalf.

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So basically what they have to do is decide, as the patient would have decided for themselves in the circumstances if they were competent.

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So they kind of have to reconstruct sort of what the patient's motivations would have been.

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And the decision that they would have made for themselves if they could. So when a substitute judgement,

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is it possible either because we just don't know what the patient would have wanted or because there's no one around that really knows them?

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We we kind of fall to the the best interest standard,

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so we just make the decision that we think in a general sort of way would be in the patient's best interest.

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So this appeals to kind of a general conception of interest that most people could be expected to have the right.

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We are concerned about minimising suffering or we think most people would be concerned about restoring physical capacity.

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So we make decisions with an eye to restoring physical capacity, just sort of based on what a reasonable person would probably want for themselves.

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So it's a little less tailored to sort of the individual preferences of of the patient.

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OK. So that's the standard view. But in practise as surrogate decision making.

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Perhaps not surprisingly, often departs from the standard model.

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So surrogates will engage in conversations with physicians about what the patient's prognosis is and the possibility of their recovery or decline.

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They will weigh kind of the burdens of continued treatment on the patient. So he's the patient suffering physically, emotionally, mentally.

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What is their anticipated quality of life? So all of these are important considerations in sort of informing best interest or substituting judgement.

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But surrogates also sometimes will draw on beliefs about the patient's personality.

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So they might say things like, well, you know, Frieda was a real fighter and she wouldn't want us to give up on her or Frieda was very religious.

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And so she believed in sort of the preciousness of life.

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And so she would want us to continue going or free to believe that, you know, God would take care, take care of her.

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So we don't we don't want sort of medical technological kind of intervention.

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Surrogates might also consider a sort of the burdens on themselves or other members of

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the patient's family in deciding what would what would be best or they might think,

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well, what would I want in this situation if I was the patient? So, again, they're not making kind of a substitute judgement.

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They're thinking. What they would sort of prefer and using that to kind of inform their decision.

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So in reality, surrogate decision making is in practise.

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I should say it's kind of a mishmash of a whole bunch of different strategies, but there isn't really one sort of clear formula of that.

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Families tend to follow, and this can lead to conflicts and uncertainty about what to do either amongst families or between them.

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So adhering to the standard view of surrogate decision making does provide one way of resolving the conflict.

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So surrogate should make a substitute substituted judgement, a free this case.

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So based on the fact that she said she wouldn't want to live in a severely disabled state, she expressed this preference fairly clearly.

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What we ought to do is adhere to it and stop treating her.

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So I'm going to argue that the standard view of surrogate decision making has some flaws.

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The substituted judgement standard specifically assumes that once a patient uses decision making capacity,

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their past values and wishes become overheated.

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So what we need to do once a patient loses the capacity to make decisions for themselves is to think about what they

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wanted in the past or what they expressed in the past and and use that to sort of construct what we should do now.

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So I propose that a person can lose decision making capacity, but still retain sufficient mental capacities to allow them to have meaningful values

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and interest in these values and interests that should guide to a good decision,

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not necessarily their past. So I don't want to argue that past wishes or preferences or things like that are never relevant.

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I'm not arguing that we should never look to patients prior wishes or their advance records to decide what we should do.

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I think in some cases you should do that. I just want to more question why we tend to draw the line at the loss of decision making capacity.

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So why is it that once a patient decision making capacity, we care much, much less about their present interests or values?

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And we care much, much more about what they wanted in the past. So I want to question that.

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And then I want to go on to or how this might apply in cases of CND and I'll argue that patients

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with CND retain sufficient mental capacity to continue to have values and interests in the present,

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despite lacking Decision-Making capacity. OK.

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So any of you who are interested in medical ethics, you know that in Western medical ethics at least, is a very high value placed on digital autonomy.

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So because the burden of treatment is primarily borne by the patients,

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we think that patients have the right to choose which treatments they will and won't accept.

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So Surrogate Decision-Making kind of starts from this basic starting point.

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So when a patient can't be relied upon to make decisions for themselves about their treatment,

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how can we project their general right to make their own decisions? So if we can't decide for ourselves and the president,

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how can we sort of respect the importance of individual autonomy in decision making on their behalf?

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So we ask ourselves, what would the patient decide for themselves? I mean, this is a natural strategy to look at what the patient's prior wishes were,

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what they express when they were so competent and kind of build from that prior stage of companies.

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What we should do for them in the present. So our best alternative is to appeal to the choices that they made in the past.

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A highly influential articulation of this view comes from Dworkin in the book Lies to Me.

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So we'll talk a little bit more about working in his view of the economy.

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So for Dworkin well-being, our well-being depends on experiential interests and critical interest.

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So experiential interests are those things that value because we like the experience of doing them.

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So these are things that we think are exciting or enjoyable or pleasure. Also, it doesn't track perfectly with wisdom, find pleasurable.

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But these are things that we can join. We just kind of for the sake of doing.

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Critical interests, on the other hand, are concerned with things that we believe are generally genuinely important for a good life.

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So critical interests kind of capture what we think is really valuable and about what we should want from our lives.

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And if we didn't have these things, we'd be much worse off.

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So I might have an experience or interest in playing golf or hanging out with my my friends, because this is just something that I like to do.

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It makes me happy. It gives me pleasure. Conversely, having a sort of a good relationship with my siblings might be a critical interest.

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I think it's really important for a good life to have a good relationship with one's family or something like that.

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And in fact, people who don't have a good relationship with their family are sort of less well off.

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They're missing something that's important for a good life. So this is this is something about what's really valuable.

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I don't I don't like having a relationship with my family because it necessarily makes you happy, although it does.

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But the reason I'm doing it is because I think it's something that's genuinely important.

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So not only do we want to have sort of the right experiential interests and critical interests under work view,

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we also want these interest to be satisfied in the right way. Specifically, we want these things to kind of form a cohesive narrative.

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We want our experience to be ordered and the right kind of way to put this another way.

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We want to be on to work and to the authors of our own life.

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So it's in pursuing kind of critical interests that we that our decisions are shaped and we sort of construct the narrative shape of our life.

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So we want our lives to have the right kind of experiences and achievements, but we want them to have a certain kind of integrity.

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So in expressing our critical interests, we're sort of constructing the kind of people that we think we ought to be.

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So we're sort of forming this this coherent sort of narrative of ourselves, and we're living this out through our critical interest.

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So I think it's important for people to have good relations with their family and that kind of structures a lot of the decisions that I make.

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And this is why it's important for me to have autonomy, because it's through exercising my aton that I am able to sort of express my critical interest

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or satisfy my critical interests and sort of create this coherent narrative structure.

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And so one of the ways that we can see the importance of this sort of life

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narrative is actually when people are talking about the ends of their lives.

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So when people talk about kind of dying with dignity or, you know,

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I wouldn't want people to see me in a hospital bed or full of tubes surrounded by machines,

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because that's not the kind of person that I sort of want to be remembered as. So that's not the sort of person I see myself as E!

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So as much as we want our lives to fall, this sort of appropriate life narrative,

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we also want our guest to be kind of an appropriate last chapter to our life near.

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We want things to be sort of consistent across our lives with this sense of self that

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we created over the course of our lives and by living out our critical interests.

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So it's important for for work, and this is why autonomy is important and it's important that we're able to choose for ourselves,

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not because we're necessarily going to make the best decisions with respect to our well-being.

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In fact, he acknowledges that sometimes, well, oftentimes we make decisions that aren't in our best interests.

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The importance of autonomy for working is that it allows us to sort of author our own lives.

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And that's why we really think autonomy is important.

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So once we leave our decision making capacity, we lose this power to author our own self narrative.

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So we can't really once we lose our decisionmaking capacity, we lose this sort of sense of ourselves and lose this coherent sense of self.

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And our decisions don't really kind of help to construct this narrative anymore.

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And at this time, once we lose decision making varsity,

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others don't need to sort of adhere to the decisions that we make because they're no longer autonomous decision.

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However, we still have a way to sort of preserve people's sort of self narrative, even after they've lost Decision-Making capacity.

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And we can do this by appealing to their past decisions. So decision that they made when they were competent so we can allow them to

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continue to sort of authored their own lives by appealing to their past decisions.

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And this is what Dworking calls precedent.

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So by respecting a person's precedent, autonomy, we allow them to shape their life narrative in the way that they did when they were competent.

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Not by respecting the decisions that they make now, but the decisions that they made in the past when they were still fully competent.

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So importantly, we ought to do this even if it appears to conflict with their best interests in the present.

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So even if honouring on incompetence, patient's past decisions, conflicts with what appears to be in their best interests,

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now we should side with their past interests because these are the interests that help to construct that life narrative that's that's so important.

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OK, so the best way to respect the president's autonomy is through an advanced directive says working in this.

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This seems to make sense if what we care about is sort of preserving a life narrative.

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Why not appeal to people's wishes and preferences that they wrote down?

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Unfortunately, only about 25 percent of people actually have advanced directives in the year, typically elderly people.

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So this wouldn't really apply to a lot of the kind of patients that we're talking about now.

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See these patients, because these tend to be sort of younger, middle aged patients.

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These are the kinds of people that tend to survive severe traumatic brain injury. And so they're unlikely to have advanced directives.

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Sort of a more general problem is that event directors often don't contain any meaningful information.

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So they're purposely drawn to try to cover as many possible situations as they can.

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But because they're so broad, we lose something in terms of specificity.

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So. Well, an advance directive might say something like you wouldn't want to have sort of a feeding tubes inserted into your body for any reason.

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What if this was only required for two days or something like that?

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So that level, that kind of granularity isn't always there in advance directives.

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Perhaps more problematically is that adventure executives are often uninformed.

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So people are filling them out. Studies indicate that they're they're quite susceptible to change over time.

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So what people articulate in advance directive tends to be just what they're feeling at the time.

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So it's not like. There's a lot of reflection that goes into this before the advance active is kind of created.

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It is sort of a time capsule, so to speak, of people's treatment preferences at a certain time.

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So there's we might be unsure about whether this reflects what the person would

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actually want when the time comes to to appeal to the advanced directive.

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So like advance directives I substituted, judgement is also taken to support precedent,

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autonomy, but it's susceptible to similar kinds of practical problems.

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So it has difficulty accounting for changes in people's preferences over time.

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So I might think sort of now that I wouldn't want to live with a severe disability,

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but then I'd become friends with someone with a severe disability and I get to see sort of what life is actually like for them.

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And I think, well, maybe being severely disabled wouldn't be as bad as I thought, or maybe I'd become severely disabled.

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And then I think, well, actually, being severely disabled isn't as bad as I thought.

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I do definitely change my preference from what it was before.

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So substituted judgement has some difficulty accounting for these changes and preferences.

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Surrogates also have a difficulty identifying where their own needs and values differ from those of the patients.

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So this is something that I kind of mentioned before. Introducing another party into the decision making introduces lots of sources of error and bias.

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So surrogates, they might not be able to clearly separate what the patient would have,

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would have decided what would be best for them versus what the surrogate kind of thinks that the patient would have decided.

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Surrogates are also susceptible to certain kinds of biases.

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So, for example, the status quo bias is where people just tend to not want to make any changes to treatment.

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So we don't want to withdraw and we just sort of let things stay as they are so that we don't have to make a decision.

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So this often happens in the cases, in cases of substituted judgement. So, again, by introducing another party, kind of introducing sources of error,

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bias and studies suggest next surrogates are only correct in sort of determining what a patient would want.

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About 60 percent of the time. So in these sorts of studies, we ask one person to say, you know what?

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What they would want in certain circumstances.

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Then we ask them, their surrogate decision maker, you kind of guess what they would have wanted and they only match up about 60 percent of the time.

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Of course, this is not a perfect measure of how surrogates actually work kind of in practise,

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but it suggests that surrogate decision making is by no means 100 percent accurate.

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OK. But I think there is in addition to these sorts of practical problems that you think maybe we can resolve with more

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education about the importance of advance directives or the kind of more more counselling for surrogate decision makers.

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These are sort of practical problems. We could get over. I think there's a deeper problem here.

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So recall that on the standard you the value of autonomy is grounded in the importance of being the author of one's own self narrative.

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So once a decision making capacity is lost, a person can't be a self author anymore.

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So we have to appeal to their past decisions and values. So a paradigm case of this is patients with advanced Alzheimer's.

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So these patients at a certain point have lost decision making capacity.

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And this has taken to be roughly contemporaneous with the loss.

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The kind of global loss of the ability to conceive of their critical interests so they no longer have this coherent sense of themselves.

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And they they can't sort of act out of kind of a genuine character anymore.

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So they've lost this sense of sort of who and who they are and what motivates kind of their their critical interests.

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And this happens at around the time that they lose Decision-Making capacity.

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And so the reason that losing decision making capacity is so important is because now they can't kind of author their own lives anymore.

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And this is why it's important to immediately move to consideration of their past interests,

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to allow them to kind of continue to offer their author their lives, because that's what we think is really important.

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So I want to suggest that patients with CNB are likely.

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I mean, we don't know this for sure because it would be quite difficult to verify but would likely have lost decision making capacity.

385
00:41:05,640 --> 00:41:13,080
But it seems possible that they still have the kinds of preferences and values which we think should shape decision making on their behalf.

386
00:41:13,080 --> 00:41:18,780
So they may have the capacity for genuine commitments even after losing Decision-Making capacity.

387
00:41:18,780 --> 00:41:23,700
So they might enjoy or genuinely value being part of a family group.

388
00:41:23,700 --> 00:41:29,040
They might value participating in scientific research and sort of benefiting future patients,

389
00:41:29,040 --> 00:41:33,510
even though they lack the capacity to make specific decisions about these kinds of things.

390
00:41:33,510 --> 00:41:42,840
So we wouldn't say to Scott, do you sort of consent to participating in this neuro imaging study because you don't think he has decision making?

391
00:41:42,840 --> 00:41:47,580
What this doesn't mean that he doesn't get sort of some value out of contributing to science,

392
00:41:47,580 --> 00:41:52,410
even if we don't think he could make a specific decision about this for himself.

393
00:41:52,410 --> 00:41:57,630
So these kinds of values don't seem to have anything to do with our life narrative.

394
00:41:57,630 --> 00:42:07,600
But they do seem genuinely important. So there's sort of a minor objection to the work and then a major objection to the work.

395
00:42:07,600 --> 00:42:12,490
To be honest, I'm not I'm not 100 percent sure which one I really want to make here.

396
00:42:12,490 --> 00:42:15,760
So the minor objection seems to be something like this.

397
00:42:15,760 --> 00:42:22,450
Maybe seeing these patients actually do still have something like decision making capacity, even though this is something we don't know.

398
00:42:22,450 --> 00:42:24,370
We can't really know.

399
00:42:24,370 --> 00:42:31,090
So in this case, the best thing to do to reflect their life near that would be to emphasise their present concerns whenever this happens.

400
00:42:31,090 --> 00:42:39,190
So really, the tension is between their past life narrative and the present life near.

401
00:42:39,190 --> 00:42:44,750
So I think Dorkin could maybe accommodate this because we're still sort of privileging the importance of life narrative.

402
00:42:44,750 --> 00:42:49,870
And the question is just how best that he thinks that it's the best way to do that.

403
00:42:49,870 --> 00:42:59,080
So a few of the past decisions, and I would suggest that maybe the best way to accommodate that is to deal with present sort of values.

404
00:42:59,080 --> 00:43:07,480
But ultimately, we're kind of agreeing that life here is important or sort of a primary importance or the more significant objection is that,

405
00:43:07,480 --> 00:43:12,000
look, life narrative is not the only reason that we care about autonomy.

406
00:43:12,000 --> 00:43:18,460
So even if CND patients don't have the capacity to continue to author their

407
00:43:18,460 --> 00:43:26,350
life narrative because they don't have this coherent sense of self anymore, surely they still have the kinds of values and interests that we think are

408
00:43:26,350 --> 00:43:33,130
important and ought to sort of inform ah ah decision making on their behalf.

409
00:43:33,130 --> 00:43:37,510
So forget about the fact that they're no longer the authors of their own lives.

410
00:43:37,510 --> 00:43:43,660
What we should be concerned about is sort of other important values that they might have in the present.

411
00:43:43,660 --> 00:43:47,320
Not so much on their sort of past wishes.

412
00:43:47,320 --> 00:43:54,000
And so this sort of objection would apply not only to see any patients with any kind of patient that lacks Decision-Making capacity.

413
00:43:54,000 --> 00:44:00,680
So is there any evidence for these kind of significant cognitive capacity in patients with CND?

414
00:44:00,680 --> 00:44:06,830
OK. So we said before the mental imagery task requires the exercise of a range of cognitive capacities.

415
00:44:06,830 --> 00:44:13,350
So things like sustained attention and language comprehension, all the things that you need to do to imagine playing tennis.

416
00:44:13,350 --> 00:44:20,210
And some patients have also participated in what I referred to before as the movie task.

417
00:44:20,210 --> 00:44:28,100
So in this in this experiment, patients were just told to widen the scanner and sort of attend to this suspenseful movie.

418
00:44:28,100 --> 00:44:33,000
So this was a short movie clip. I think we call Bang, You're Dead.

419
00:44:33,000 --> 00:44:39,000
And it was a Alfred Hitchcock kind of TV movie. So very quick plot summary, though.

420
00:44:39,000 --> 00:44:44,180
The little boy on the left. He thinks he's playing with a toy gun but he's actually playing with a real gun.

421
00:44:44,180 --> 00:44:48,000
So he's walking around, pointing it at people, pretending to shoot them.

422
00:44:48,000 --> 00:44:55,050
And as a viewer, this is very suspenseful.  you think Oh if he actually pulled the trigger, he might kill somebody.

423
00:44:55,050 --> 00:45:05,280
So there's a whole kind of series of experiments. But just to sort of to condense it, basically when a healthy person watches a movie like this,

424
00:45:05,280 --> 00:45:14,160
we see kind of characteristic pattern of activation in various parts of their brain having to do with sort of executive function.

425
00:45:14,160 --> 00:45:22,140
So this is this is a part of the brain. So a kind of system in the brain that allows us to sort of taking visual and auditory information

426
00:45:22,140 --> 00:45:29,910
integrated with our past knowledge to sort of get a sense of the state of play of the world around us.

427
00:45:29,910 --> 00:45:33,240
So help you pick healthy participants when they're watching this suspense movie.

428
00:45:33,240 --> 00:45:36,570
Their brains look like this one. Yes.

429
00:45:36,570 --> 00:45:42,240
Patient their brain with like that. So you would infer from that they were kind of experiencing anything.

430
00:45:42,240 --> 00:45:48,960
So they were getting a little bit of auditory information, but they weren't consciously experiencing anything but another patient.

431
00:45:48,960 --> 00:45:56,670
This is Jeff Trombley. His brain looked very similar to what we would expect from a healthy participant.

432
00:45:56,670 --> 00:46:01,530
So in a series of other kinds of experiments, which I won't get into.

433
00:46:01,530 --> 00:46:10,060
The researchers kind of took this to mean that Jeff was having at least a highly similar conscious experience to a healthy participant.

434
00:46:10,060 --> 00:46:16,110
So he was experiencing the movie in the same way you and I would. So he was experiencing the suspense of the movie.

435
00:46:16,110 --> 00:46:21,480
So what can we infer about his cognitive capacities based on this?

436
00:46:21,480 --> 00:46:28,140
So there's a few different things. One of the most important is that he retains his capacity for executive function so he can take in kind of

437
00:46:28,140 --> 00:46:34,980
sensory information and organise it in this way to sort of understand what's going on in the world around him.

438
00:46:34,980 --> 00:46:38,160
There's also evidence that he possesses sort of a theory of mine.

439
00:46:38,160 --> 00:46:43,770
So he can he can understand that other people are thinking and thinking things that might be different for him.

440
00:46:43,770 --> 00:46:53,610
This is this is critical to understanding that the characters in the movie don't realise that the gun isn't isn't a toy.

441
00:46:53,610 --> 00:46:57,750
So he's able to he's able to understand that other people have thoughts as well.

442
00:46:57,750 --> 00:47:06,000
And perhaps he's capable of organising all of these thoughts into kind of a temporal order in order to follow the plot.

443
00:47:06,000 --> 00:47:12,000
So this is a this is kind of a host of fairly high level cognitive capacities,

444
00:47:12,000 --> 00:47:16,000
which are required to sort of attend to a movie and the same with an healthy person.

445
00:47:16,000 --> 00:47:24,900
So we can infer that these sorts of things are present in at least some CND patients.

446
00:47:24,900 --> 00:47:31,990
So there's some evidence that CND patients may have the kinds of values and interests which ought to inform circuit decision.

447
00:47:31,990 --> 00:47:38,070
Sorry. So I skipped over a little bit there. So the idea is that because they have these sophisticated cognitive capacities,

448
00:47:38,070 --> 00:47:45,340
they have the capacity for certain kinds of values and interests, so similar values and interests.

449
00:47:45,340 --> 00:47:49,020
So because they're capable of organising their thoughts in a certain kind of way,

450
00:47:49,020 --> 00:47:57,330
maybe they have sort of an interest in their lives going in a certain kind of way because they're able to infer thoughts and other people.

451
00:47:57,330 --> 00:48:03,050
This greatly expands kind of how they can how they can understand how people are interacting with them.

452
00:48:03,050 --> 00:48:07,350
And this creates a possibility for different kinds of values and interests as well.

453
00:48:07,350 --> 00:48:10,850
Beyond just self narrative.

454
00:48:10,850 --> 00:48:19,940
So does this make a difference to how surrogate decision makers should actually make decisions on behalf of these patients?

455
00:48:19,940 --> 00:48:23,990
So is there a reason to think that a patient with cognitive motor and dissociation,

456
00:48:23,990 --> 00:48:31,010
if they have these other kinds of if they could potentially have other kinds of important interests,

457
00:48:31,010 --> 00:48:36,890
like an interest in spending time with their family or participating in an important scientific research?

458
00:48:36,890 --> 00:48:41,000
Is there any reason to think that their interests, by and large, are any different than they were pre injury?

459
00:48:41,000 --> 00:48:50,780
So if we think, well, look, on Dworkin's view, someone like Frieda wouldn't have wanted to go on living based on her past wishes.

460
00:48:50,780 --> 00:48:54,530
And as it turns out, she doesn't want to go on living based on her present wishes.

461
00:48:54,530 --> 00:48:57,350
So maybe this doesn't really make a difference.

462
00:48:57,350 --> 00:49:04,310
So is there any reason to think that interest, their interest actually would have changed pre and post injury?

463
00:49:04,310 --> 00:49:10,250
Well, there's some evidence for this. So this is on the left, Tony Clinton and on the right.

464
00:49:10,250 --> 00:49:14,240
Kevin Weller. So these are both our patients in the lock and state.

465
00:49:14,240 --> 00:49:19,860
So locking patients, I take to be an illustration of the potential for response shift.

466
00:49:19,860 --> 00:49:28,370
So this is the idea that people's important preferences and expectations for life can shift significantly over time.

467
00:49:28,370 --> 00:49:38,150
In light of changes to their circumstances. So research suggests that many healthy people wouldn't want to go on living if they were locked in.

468
00:49:38,150 --> 00:49:43,820
So, all right, patients that are locked in are completely conscious.

469
00:49:43,820 --> 00:49:50,030
They're fully cognitively intact, just like you and I, but they're completely incapable of movement usually,

470
00:49:50,030 --> 00:49:54,830
except for kind of movements of the jaw or up and down movements of their eyes.

471
00:49:54,830 --> 00:49:59,870
There are some cases of patients that are sure to truly walk in and they can't move at all.

472
00:49:59,870 --> 00:50:05,310
That's a little bit rarer than sort of classic walk ins. I like these patients are.

473
00:50:05,310 --> 00:50:10,500
So, as I said, about 36, 40 percent of patients wouldn't want to go on living a walk, etc.,

474
00:50:10,500 --> 00:50:18,000
but about 40 percent of patients are participants in this study are unsure about whether they want to go on living with walk ins.

475
00:50:18,000 --> 00:50:31,000
However, perhaps surprisingly, one study has shown that 72 percent of patients with locked in syndrome that were surveyed self report as being happy.

476
00:50:31,000 --> 00:50:36,090
So they they think that their lives are going, you know, pretty well.

477
00:50:36,090 --> 00:50:42,630
Not all of them say that they would want to be sort of resuscitated in the event of a heart attack.

478
00:50:42,630 --> 00:50:54,180
A small percentage of them kind of would still think they would consent to euthanasia if it were offered to them, something like five percent of them.

479
00:50:54,180 --> 00:50:58,440
So there are these these statistics should be taken with, I think,

480
00:50:58,440 --> 00:51:06,810
with a pinch of salt so they could reflect a selection bias on these patients were taken from sort of a support group of locked in syndrome patients.

481
00:51:06,810 --> 00:51:09,930
So maybe there was some self selection here.

482
00:51:09,930 --> 00:51:17,810
The kind of patient that one participated in the study about happiness and locked in syndrome tend to be happier.

483
00:51:17,810 --> 00:51:25,590
And on the left, Tony Nicholson was involved in kind of prolonged case about.

484
00:51:25,590 --> 00:51:29,190
Sort of whether it was legal for him to be allowed to die.

485
00:51:29,190 --> 00:51:32,940
So he was not happy in in his in his condition.

486
00:51:32,940 --> 00:51:40,110
And he very much wanted to end his life. So I'm not suggesting that locked in syndrome all locked into Indian patients or happen by any means.

487
00:51:40,110 --> 00:51:47,190
But I am suggesting that this is a case where we might think that, you know, life would be truly awful.

488
00:51:47,190 --> 00:51:51,540
But once we actually get into that situation, maybe it wouldn't be so bad.

489
00:51:51,540 --> 00:51:57,570
So, again, locked in syndrome is very different from calling about an association.

490
00:51:57,570 --> 00:52:02,820
Locking patients do have some capacity for communication, which,

491
00:52:02,820 --> 00:52:10,440
with the exception of the very few patients who have used ephemera to communicate as individuals, by and large, can't communicate.

492
00:52:10,440 --> 00:52:13,980
So there's definitely a difference between those patient groups.

493
00:52:13,980 --> 00:52:20,000
But I just want to suggest that there is the potential that a patient sort of past wishes to

494
00:52:20,000 --> 00:52:25,950
not go on living with a severe kind of disability like CND or like locked in syndrome.

495
00:52:25,950 --> 00:52:32,740
Those actually might change once they're actually in that situation. OK.

496
00:52:32,740 --> 00:52:40,300
So to get back to the main question, how should surrogates make decisions on behalf of behavioural nonresponsive patients?

497
00:52:40,300 --> 00:52:47,350
So I think surrogate decision makers should be cautious about placing too much weight on patients past desires and values.

498
00:52:47,350 --> 00:52:54,000
They should place a greater weight on their present values, concerns and desires, reflecting the ways they can still engage with the world.

499
00:52:54,000 --> 00:53:01,870
So I've argued that there's some evidence that patients with covert Awareness could retain the capacity for critical interest in the present,

500
00:53:01,870 --> 00:53:05,500
i.e. they could have a sense of what's meaningful and valuable in life for them.

501
00:53:05,500 --> 00:53:09,640
And that may be different from their past critical injuries.

502
00:53:09,640 --> 00:53:17,740
So I think this gives a reason to question the authority of their past critical interest in decision making on their behalf.

503
00:53:17,740 --> 00:53:23,710
I think that even if we want to grant that shaping one's life narrative is important.

504
00:53:23,710 --> 00:53:29,170
I don't think it should necessarily be a primary importance because the other kinds of values are important as well.

505
00:53:29,170 --> 00:53:34,570
And these values that these patients can still have are important as well.

506
00:53:34,570 --> 00:53:38,890
So patients pass critical interest may have reflected how they wonder lights go in the past,

507
00:53:38,890 --> 00:53:46,750
but it may not reflect how they want their lives to go in the present. Now, there's no doubt that in the absence of communication with these patients,

508
00:53:46,750 --> 00:53:52,270
it's a it's a significant challenge to sort of discern what actually would be in their best interest in the present.

509
00:53:52,270 --> 00:53:59,830
So what these so I say they might be capable of having certain kinds of values or interests in the present that should govern decision making.

510
00:53:59,830 --> 00:54:07,000
What these desires and values actually are is going to be really hard to determine without direct communication.

511
00:54:07,000 --> 00:54:14,470
So we can make kind of general inferences from similar patients. So like locked in patients.

512
00:54:14,470 --> 00:54:17,080
That's that's one potential option.

513
00:54:17,080 --> 00:54:29,150
There are different kinds of sort of qualitative assessments being developed of well-being in patients with disorders of consciousness.

514
00:54:29,150 --> 00:54:34,310
We should probably think about how these patients are likely to be experiencing their condition right now,

515
00:54:34,310 --> 00:54:38,910
maybe based on the kinds of ways that they reacted to situations in the past.

516
00:54:38,910 --> 00:54:40,460
As there is some evidence to suggest,

517
00:54:40,460 --> 00:54:49,490
the way people feel with kinds of crises or difficulties does sort of transfer over pre and post disability others.

518
00:54:49,490 --> 00:54:51,710
There's no question that it's going to be very difficult.

519
00:54:51,710 --> 00:55:02,450
And I think maybe we need to be open to the possibility that for some patients, continued life is not necessarily going to be in their best interests.

520
00:55:02,450 --> 00:55:09,710
But the but the takeaway is that we should be focussing on their present interest rather than their past wishes.

521
00:55:09,710 --> 00:55:15,530
So obviously, there's a need for continued development, for tools to assess well-being in noncommunicative patients,

522
00:55:15,530 --> 00:55:22,520
because even as the ability to communicate with them grows, the majority of patients probably won't be able to communicate with them directly.

523
00:55:22,520 --> 00:55:31,780
So we need to find some way to kind of get at these these values that are important to them in the present.

524
00:55:31,780 --> 00:55:39,680
OK. Very brief summary. So the standard view of circuit decision making places significant emphasis on respecting patient autonomy.

525
00:55:39,680 --> 00:55:44,400
So when a patient loses competence, their past desires and wishes become authority.

526
00:55:44,400 --> 00:55:47,870
And the reason this is, is because self authorship is really important.

527
00:55:47,870 --> 00:55:53,420
But somewhat authorship isn't the only reason we care about making your own decisions contract working.

528
00:55:53,420 --> 00:55:58,370
So these other considerations, I suggest, ought to inform surrogate decision making.

529
00:55:58,370 --> 00:56:04,850
And CND patients are one example of a patient group that could continue to have these values and interests in the present.

530
00:56:04,850 --> 00:56:13,130
And so when we're thinking about how we should be making decisions on behalf of these patients, we should focus on the present rather than the past.

531
00:56:13,130 --> 00:56:17,420
Thank you very much. All right.

532
00:56:17,420 --> 00:56:20,898
Thank you. We will be here all along, Mackenzie. Oh, you OK?