A petition for action on helmets

Link: Tell Jean Todt – Help Make Helmets Safer for Everyone

Since it’s pretty clear that the message of Michael’s tragedy hasn’t been picked up by those with the wherewithal to actually DO something, I’ve created a petition asking Jean Todt to commit the FIA to taking the lead on improving helmet safety.

Let’s get this done, so that when people strap helmets on, they can actually be confident they’re being protected!

Thanks so much!

Good news?

As my mom always said, “You make your bed, you gotta sleep in it”. So even though I was sure I’d written my last post having anything to do directly with the Michael Schumacher tragedy, I just want to answer the hundreds of questions I’ve already gotten as to the import of todays statement.

1) It is obviously good news that Michael has left the hospital. Because of the length of time since Michael’s injury, and of the specific role of an Intensive Care Unit (ICU) in supporting and monitoring the function of the body’s major systems, it’s almost certain that Michael has not simply been discharged from the ICU to a rehab, without having “transitioned” by a stay on the regular wards. I have never seen a head injury patient with a 5 month ICU admission be transferred directly to a rehab facility . . . but anything’s possible. 

Remember that there are lots of rehab facilities that can handle ventilated patients, so this transfer also says nothing about whether or not Michael is breathing spontaneously.

2) The moment Sabine announced that Michael had moments of eye opening, we knew he was no longer in a coma. BY DEFINITION. Coma = no consciousness, no eye opening. Open your eyes but unconscious, it’s a vegetative state. Add fluctuating signs of interaction with the environment, it’s a minimally conscious state.

So what does that mean? Sabine is a professional. At the beginning of April, she told us Michael had moments of awakening AND of consciousness. Once again, by saying this, she told us in almost clinically perfect language that Michael was no longer in a coma. She used two terms that only specialists actually distinguish; for laymen being awake and being conscious are the same thing. This language, then, clearly was used based on discussions with Michael’s care team, and reflected a highly accurate description of his minimally conscious state.

Now, we’re told, with what appears to be a bit of a triumphal air, that Michael is no longer in a coma. As stated above, THIS IS NOT NEWS. I cannot help but think that this is a highly cynical use of language, using the truth to convey an impression that is almost certainly false. I cannot but think that if Michael had emerged AT ALL from the minimally conscious state that Sabine so accurately described in April, we’d be told that Michael is leaving for rehab, that he is having problems expressing himself and will work hard to get better. Or that he’s having to learn to walk,read, write, etc all over again. But no, we’re told what we already know, and pretty much told to not ever expect further updates. Kinda like what I was thinking.

This all leaves a very bad taste in my mouth. And a huge space of sadness for Michael’s family, and for you, his fans.

A brief announcement

I’ve decided that I’m going to stop writing about Michael Schumacher, about his accident, and about what his situation may or may not be.

There’s not much more really to say. It leaves me with a leaden feeling in my gut that Michael is in his sickbed, and that more words aren’t going to help anybody with anything. And in terms of my blog, I think I’ve pretty much covered it all.

I’ll read all your comments as I’ve always done. Forgive the odd deletion – the criteria are fluid, and are highly dependent on whether they’re the first comments I read upon awakening, or rather in the near-euphoria of returning home after a long day at the hospital! Bear with me about that, and if a given deletion SEEMS illogical, trust me, it is. I in no way intend disrespect for your thoughts and for the fact that you actually WRITE stuff here. It still blows me away. But I’ll try to maintain a bit of decorum (totally arbitrary I know) in the comments, and will rely mostly on YOU to keep things civil. Or at least make the incivility so good that we all are dying to use it somewhere else. THAT would be worth it. And no, I’m not going to have an incivility contest. Hmm…

My interest in head injury, and in concussion in particular, remains, and will be a source of posts. The POTUS just had people to the White House to discuss this issue – there is a HUGE, almost evidence-based cultural tsunami going on, and its ramifications are enormous.

Anyway, see all of you soon.

Michael – five months on

First of all, I want to thank you all for your comments and questions since last week. We’ve got lots to talk about – today it’ll be a bit about Michael Schumacher’s situation, but I’m also going to be writing about the fascinating duel between Lewis and Nico . . . AND continue the series about trackside medical intervention.

I’m also looking at starting a video blog, as a way to better interact with you all. This will probably be through a YouTube channel; one of the things I want to do there is answer your questions in a more comfortable format. (If you’ve got questions you want answered, send them here to comments, and I’ll get to them once the v-log is up and running.

Tons of you have asked about Michael’s current status. Obviously I have no direct information. And I’m STILL considering that if there were good news to be had, we’d have been told. I can conceive of no possible reason that Michael’s entourage, understandably extremely protective of his (and their) privacy, would NOT tell his fans if significantly good things have happened. So as always, I’m speaking based essentially on the published and consensus epidemiology concerning outcome in severe head injury. And of course, as always, a reminder. Every caregiver working with a significant number of head injured patients has seen surprising and unexpected emergences. But these are rare, achingly rare.

Let’s take a look at what’s called a “survival curve” for patients in a persistent vegetative state (PVS) after trauma:

Image

On the graph, we’ve got time (in months) along the bottom, and percent of patients along the yaxis. At time 0 (the day of injury), we’ve got 100% of the study population of patients in PVS. Just as a reminder, PVS means apparent wakefulness (eye opening, something resembling a sleep-wake cycle, etc) without signs of consciousness (awareness of self and/or the environment).

As we move left to right, we see three sub-populations opening up – from top to bottom, there are those who regain consciousness, those who die, and those who remain in a vegetative state. Michael is now 5 months post-injury, but for the sake of simplicity, let’s look at the 6 month mark. Look at the line indicated by the arrows. Notice how at 6 months, this line becomes very nearly horizontal.

This horizontal line says, in the most eloquent and desperately sad way, that after 6 months only a tiny tiny fraction of patients in PVS regain consciousness. In essence, persistence of the vegetative state or death are the primary outcomes remaining. The slope of the line separating “dead” from “persistent vegetative state” shows the approximate death rate of these patients – roughly 25-30% per year. And just to repeat what I’d said in an earlier post, essentially no one in a persistent vegetative state at ONE YEAR will ever regain consciousness.

If Michael is in a minimally conscious state (MCS, defined as the presence of objective, but fluctuating and inconsistently reproducible signs of either self-awareness or interaction with the environment), the outcomes are slightly better. There would then be a low, but real, possibility of improvement in the quality of consciousness over the next several months to years. That said, agonisingly few patients in an MCS at six months ever wind up speaking, walking, dressing themselves, etc.

As to the rumours of Michael being at home, they could easily be true, but I have no way of knowing. This would be the kind of information I’d assume would be EXTREMELY closely held, for obvious reasons.

There is no reason why this shouldn’t be possible. If Michael is still ventilator-dependent, taking Michael home would require a certain amount of equipment and the round-the-clock presence of a significant level of care, but thousands of ventilator-dependent patients are cared for at home. If Michael is breathing on his own, home care becomes even more feasible. As you can imagine, patients with prolonged severe disorders of consciousness require a high level of care, but this would be something that Michael’s family could organise with no major problems.

I’m quite afraid (and virtually certain) we will never have any good news about Michael. At this point, I rather dread seeing that the family has put out a press release. . .

Some important science on disorders of consciousness – part 2

Image

An MRI scanner

Imagine this: You’ve volunteered for a brain imaging experiment to help study consciousness. You come to the MRI suite, and lie down. The researchers put an IV drip in place, and then infuse a form of glucose that “lights up” the brain areas that are activated at any given moment. So far so good.

You’re told to close your eyes and imagine hitting a tennis ball back and forth with a partner. Sure enough, this consistently activates an area related to preparing the brain for motor activity (called the Supplementary Motor Area, SMA, in yellow below). Then you’re asked to imagine walking around your house, and to visualise all the things you’d see as you navigated like this. And once again, the corresponding area, called the Parahippocampal Gyrus, (PG, in green below) lights up. Here’s roughly what the images look like:

Image

Nothing unusual or unexpected here. But now let’s go a bit further with the technique.

Let’s now take a series of patients (54 to be exact) who have been diagnosed with either vegetative state (remember – that’s eye opening without any signs of conscious interaction with the environment) or a minimally conscious state (awake, but with fluctuating but consistent signs of consciousness), and let’s try the same experiment.

Incredibly, FIVE of these patients  (10%!) could manipulate brain activity in response to the researchers’ requests. These people were, in fact, obeying commands (“think about tennis”, “think about navigating”), but their response wasn’t behavioural, it was . . . metabolic; what’s crucial is that they clearly showed signs of consciousness.

This was an amazing finding, but the investigators took the work further still, and, using a very ingenious trick, what they revealed shocked the world of medicine.

Let’s quickly put you back into the fMRI machine. This time, here’s what I’m going to do. I’m going to ask you a simple, unambiguous question (like, do you have a brother?). I’m going to tell you to think “tennis” for YES, think “navigation” for NO. (Rather like using fMRI activation as a “blink once for yes, twice for no” kind of communication tool.) Turns out this works fine, with 100% accuracy with normal subjects.

I guess you see where I’m going with this. Let’s take one of the patients diagnosed as vegetative but who has shown the ability to “light up” his or her supplemental motor area or parahippocampal gyrus on demand. Let’s do the same thing with him. Let’s ask him or her questions – tennis if yes, navigation if no. What happens? Let me quote the researchers: “. . . for those five questions, the pattern (of activation) produced ALWAYS matched the factually correct answer.” 

I’ll let that soak in for a moment.

These scientists just took a patient who’d been diagnosed as vegetative (and again, I’ll insist that this means NO CONSCIOUSNESS) and not only TALKED TO HIM, but actually got answers!

What are the implications? First of all, this study shows how hard it actually is to make a proper diagnosis of the vegetative state. Until now, this diagnosis relied on confidently stating that there is evidence of absence of consciousness, based on detailed and lengthy observation of the patient’s behavioural responses. But remember, these patients have severely damaged brains; the behavioural repertory of responses that they can show may often be so limited that none will be found. But this study emphasises that absence of (behavioural) evidence is NOT necessarily evidence of absence (of consciousness). The infinitely more sensitive “behavioural” response of metabolic brain activation could allow, in the future, clinicians to make this diagnosis with much more confidence. This obviously has enormous implications in terms of medical and ethical decision-making as concerns any given patient.

More importantly for us, this tool would appear to open up the possibility of actually communicating with some of these patients (a small minority at best, but still . . .). The current procedure is much too cumbersome, difficult, and expensive to use routinely, but it’s not too much of a stretch to imagine a future where helmet-sized mini-MRI machines are placed on the heads of patients with prolonged disorders of consciousness to allow their care team and loved ones to communicate with them.

There is a huge amount of fascinating and useful research being done on consciousness – both normal and disordered. Functional imaging is one of the most powerful tools in this quest for knowledge. As they say, watch this space.

Here’s a link to the original NY Times article about this research. The second contains a video by Liege’s own Steve Laureys (the lead researcher), explaining the technique. And the third is to a pdf of the original article, published in the New England Journal of Medicine.

http://www.nytimes.com/2010/02/04/health/04brain.html

http://thelede.blogs.nytimes.com/2010/02/04/doctor-demonstrates-method-of-speaking-with-vegetative-patients/?_php=true&_type=blogs&action=click&module=Search&region=searchResults&mabReward=csesort%3As&url=http%3A%2F%2Fquery.nytimes.com%2Fsearch%2Fsitesearch%2F%3Faction%3Dclick%26region%3DMasthead%26pgtype%3DHomepage%26module%3DSearchSubmit%26contentCollection%3DHomepage%26t%3Dqry575%23%2Flaureys&_r=0

http://www.nejm.org/doi/pdf/10.1056/NEJMoa0905370

Some important science on disorders of consciousness – part 1

Well Liège has made it into the news again!

The Coma Science Group here at our hospital, working with other centres,

has published another significant study of persistent disorders of consciousness. It’s worth having a look at this; in a subsequent post we’ll look at another very important paper by these researchers. I’ll also  place these reports into some kind of context in terms of Michael Schumacher’s situation (or more correctly, presumed situation).

First a link to an article about today’s study:

http://www.nytimes.com/2014/04/16/health/pet-scans-found-to-clarify-vegetative-state.html?hp

And a link to the article itself:

http://download.thelancet.com/pdfs/journals/lancet/PIIS0140673614600428.pdf?id=baaFobxDfjPxxfydMxPvu

The background

Remember how we said that the vegetative state is defined as a state where the patient shows signs of wakefulness (notably open eyes) without behavioural responsiveness (as a marker of consciousness or awareness). Because of the emotionally laden and ambiguous nature of the word “vegetative”, some, including the Coma Science Group, prefer to use the term “unresponsive wakefulness syndrome” (henceforth UWS) for this state.

The key in differentiating a patient with unresponsive wakefulness syndrome from a minimally conscious state is the presence in the latter of fluctuating signs of awareness, with consistent but intermittent appropriate responses to stimuli.

Distinguishing these states can be difficult, but is absolutely crucial, medically, socially, ethically and therapeutically. A patient who is genuinely in a UWS, has, by definition, no self awareness. No voices are recognised, no sensation of hunger, none of pain, none of thirst. This is why clinicians caring for patients in a UWS are authorised almost everywhere to withdraw medical support, if and when appropriate, (including food and water – remember this is not cruel because there is no hunger or thirst perceived) from UWS patients. This is not the case once the patient has demonstrated any consciousness at all. Prognostically, as we’ve mentioned previously, persistence of a clinically correctly diagnosed (and that’s the point here) UWS for one year after the inciting trauma pretty much means any meaningful recovery is impossible. On the other hand, a minimally conscious state raises the possibility of continued progress.

Unfortunately, it can sometimes be remarkably difficult to show conclusively what state the patient is in. The problem is double.

First of all, there is the fluctuating nature of awareness. Episodes of interaction can appear randomly, or might be associated with a certain time of day, the presence of certain people, etc. The key is to do sufficient evaluations, sufficiently often, to reliably ascertain what the patient’s best level of awareness is.

Second, let’s remember that these patients have suffered devastating brain damage, whether caused by trauma (as is the case with Michael), infections, massive strokes, global anoxia, etc. This means that these patients will almost always have severe restrictions in their ability to show their responses to external (and internal) stimuli – spastic limbs which preclude reliable movements, visual or auditory deficits, etc.

Because of this, current guidelines for the management of patients with prolonged disorders of consciousness are becoming more and more insistent as to the FREQUENCY and QUALITY of the evaluations that are done. Standardised measurement scales are used, and the training necessary to administer them are well defined. Despite this, doubt remains at the edges between the diagnoses. Help is clearly needed to reliably diagnose the presence of these difficult-to-demonstrate degrees of awareness.

The study published today is an attempt to validate the use of imaging techniques, in addition to clinical evaluation, to help determine whether a patient is or is not AWARE.

The study

Steve’s study looked at the ability of two imaging techniques, FDG PET scanning and fMRI imaging, to help distinguish between UWS and minimally conscious states. FDG PET images show brain areas that are actively using glucose. This is known to correlate with activity in those same areas. FDG PET images show the pattern of brain activity at rest. On the other hand, fMRI images look for use of oxygen in the brain. It is particularly useful to do when asking the subject to do a mental task – whether visualising something, imagining something, or DOING something moving fingers, pressing buttons, etc).

It is also known with high confidence that certain brain areas show normal activity in normally conscious patients, essentially no activity in UWS patients, and intermediate (but significantly reduced) activity in patients who are minimally conscious.

This study looked at the reliability of using activity in these areas to help confirm the diagnosis made clinically, and to help determine the patient’s prognosis.

Briefly, the study showed that FDG PET imaging is highly correlated with a previously validated (and widely if not universally used) clinical scoring scale. Importantly, one third of patients (13 of 41) diagnosed clinically as being in a UWS were shown by FDG PET to have activity in centres associated with awareness. Over the next year, nine of these 13 patients (remember, they were classified clinically as UWS!) had moved “up” to a clinical diagnosis of minimal consciousness or better, while of those with an imaging “confirmation” of UWS had terribly dismal outcomes. Of these 26 patients, 35% were still unconscious after one year . . . and 56% were dead. This shows that these images may well sensitively show the possibility of awareness, and seem to contain the same prognostic information that a clinical diagnosis of minimally conscious state contains. Further the numbers track what I’ve said in previous posts in terms of prognosis.

It is absolutely vital that we understand what the study didn’t show. It did NOT show that these 32% of patients were aware, or conscious. It showed that these patients, who clinically were felt to be unconscious, “had cerebral activity compatible with consciousness” (the authors’ words). But importantly, these patients had significantly better CLINICAL courses subsequently than those in whom PET confirmed an absence of activity compatible with consciousness.

Conclusion: it’s looking like at some point in the not distant future FDG PET imaging may well be a standard test in addition to clinical scoring, to determine whether awareness is or is not present in patients with disorders of consciousness. Remember: 1) it’s not yet fully validated, meaning more research is necessary before making this a standard tool with fully accepted statistical notions of reliability and validity; 2) until it IS validated, it remains a research tool.

Implications for Michael Schumacher

Actually, to the extent that Michael has been reliably shown clinically to have signs of awareness/consciousness (this would appear to be the case based on direct quotes of Sabine Kehm), this type of imaging would have no real utility, as a diagnosis of minimally conscious state would then have been made clinically.  On the other hand, my next post will deal with another paper by our Coma Science Group, one with fascinating clinical and even philosophical implications.

 

 

“Moments of consciousness and awakening”!!!

Well today is a superb day.

Sabine has told us two incredibly important things, things that not only inform us as to where we are, but open up rather more optimistic possibilities than some of the darker options we’ve considered until now, based on not knowing.

I want to repeat, because it’s important to fully understand what will follow, that while “wakefulness” and “consciousness” usually are pretty much one and the same, after the brain is injured, the two can be dissociated. What do I mean?

Assuming that the terms are being used and translated correctly (and Sabine is a consummate professional and wouldn’t get this wrong), awakening refers to (at least) the appearance of . . . being awake. Basically that means eyes open. And as I mentioned before, this eye opening can even be cyclic, following what looks just like a sleep-wake cycle (even if not synchronised to real day-night hours).

Wakefulness WITHOUT consciousness is the definition of a vegetative state. The eyes are open, but there’s no interaction with the environment. If Sabine had “only” said that Michael was showing wakefulness, it would mean that he is not comatose. That in itself is a damned sight “better” than persistent coma, not just in terms of life expectancy, but in terms of the chances of neurologic improvement.

But Sabine has also told us that Michael is showing signs of consciousness. My lord, the brain is an amazing organ. And Michael a remarkable man. What does this consciousness probably look like? It consists of episodes of clear, purposeful interaction with the environment, and/or clear signs of awareness of self, even if these signs are not constantly present. For example, if Michael smiles when a member of his entourage talks to him – reproducibly and consistently on at least a few occasions. Or following people with his eyes. Or trying to communicate, or obeying simple commands. Any of this constitutes objective signs of contact between the “outside” and the “inside”. This then would be a minimally conscious state. And that is about the best news we could possibly get right now.

Why? Because of what it means for everyone – Michael himself, his loved ones, and his fans. It means that Michael may well see, hear, and feel the love that’s around him. That he is, in some very real way, HERE. It means his life expectancy has now improved VERY significantly. And last, but perhaps most important, it opens up a very real chance for further improvement. This would mean spending more time “in touch” with his surroundings, and also improvement in the quality of the interaction. How incredibly positive!

This means rehab, lots of rehab. Michael is used to working hard. Getting that brain to learn new ways of doing things, stimulating it, forcing it to handle data, and all the while working hard to build him up again physically. All very exciting. And very good.

Don’t get me wrong – this is a very important step, but we don’t want Michael to stay like this. But this is a very very very big step.

We all need to thank the team taking care of Michael as well as the people around him, for their devotion and patience. Everyone is going to need to be patient – for weeks, months, maybe years.

But if you’re even the slightest bit spiritual, it’s time cast a look upwards and mouth the words “thank you”.

I should have known . . .

It’s fairly evident that I really REALLY need to clarify what I meant, and what I didn’t mean, by my comments concerning “errors in judgment”. I see that I’m being quoted a lot, in lots of outlets. That’s not a problem of course, but it becomes problematic when what i wrote is turned into something that I most certainly did not say.

1) I am strictly referring to the period of management BEFORE Michael was admitted to Grenoble. As I said on 30 December, the people taking care of Michael in Grenoble can take care of any member of my family any day. They are professional and more than competent. This is an impressive team and they deserve to be recognised as such.

2) I am in no way criticising ANY member of the care team(s) dispatched to fetch Michael on the slope, nor of those involved in transferring him from Moutiers to Grenoble. As I made clear, prehospital medicine is difficult under the best of conditions. It’s not hard to imagine the added stress faced by the guys on the slopes, confronted with a clearly injured mega-star, and what must have been a VERY difficult entourage to manage. I don’t have sufficient facts of any kind, and it’s neither my job, my business, nor my intention to question the individual medical care provided by my colleagues.

What then exactly AM I saying, and almost as importantly, WHY am i saying it here, and why now? These are valid questions, and they deserve an answer.

3) I am very clearly criticising a system that allows head injured patients to be brought to non-neurosurgical centers, in the absence of other clear reasons to do so.

4) The failure to adequately control an agitated patient prior to flight, as well as the delays in adequate control of the airway likely indicate insufficient training, insufficiently robust protocols, and perhaps insufficient experience under difficult circumstances (again, a mega-star patient with a difficult, demanding and perhaps even frankly hostile entourage). I am very clearly criticising a system that allows this to happen.

5) It is impossible to quantify the impact of the above on outcome in Michael’s case. Obviously. It is also obvious that someone whose neurosurgeon, the day after the trauma, describes his condition as “hematomas left, right and centre” is likely not to do particularly well. This should be obvious, at least to the “journalists” who disingenuously (at best!) implied that I said that Michael’s current situation is because of these aspects of his initial care. The delay in admission to a neurosurgeon, as well as deferred airway control, cannot have been good for a severely injured brain. Especially in a situation where the intracranial pressure has risen so high that parts of the brain are literally being squeezed out of the cranial vault. That said, in terms of prognosis, this likely pales in significance compared to the 2000-and-some-odd joules of impact energy against that goddamned rock.

The world of medicine, including the practice of prehospital medicine, has become more and more evidence- and protocol-based. This requires constant attention to new developments, and elaboration of consensuses that are often universal (for example, the algorithms of basic and advanced life support). Intense and rigorous adherence to these protocols, with the training that this implies, has been shown to very favourably impact on the outcome after trauma. I will simply say that the French have been remarkably, and unexplainably, recalcitrant to this notion of protocol-based medicine.

Why have I said this now?

I want to make it clear that the furthest thing from my mind was causing Michael’s family added pain. Malpractice? Hey, I work in Europe, which is far from having gone as nuts as the USA with this. In any event, I don’t give a shit about MAL practice. What I’m concerned with is GOOD practice. I want people who’ve not thought about it previously to now think, before heading down the hill on their skis or boards, “am I going to be well looked after, by people with sufficient knowledge, skills and maturity, if I have an accident”? And I want the answer to be yes. Wherever, whenever.

Those of you who know me a little know that if I’ve contributed anything to motorsport medicine, it’s been mainly down to education and training. The book, the systematic simulation exercises at every Grand Prix, etc. Doctors are nothing if not people who never stop, and never want to stop, learning. I think we need once again to make sure that people who do prehospital medicine, who routinely face life-threatening situations, are sufficiently trained, equipped, and mature, to carry out their duties impeccably.

With that in mind, I need to send a quick and heartfelt shout out to General Zin and the medical team at the Grand Prix of Malaysia. These guys have created a society for motorsport and traffic medicine, with a goal to fostering best practice in the community of caregivers doing this type of medicine. BRAVO!!! These guys are tops, and have been for some time. To illustrate how “on it” they are, they have the only circuit medical centre to be ISO certified. And they’re my friends!

It’s just a pity that the national federations are left alone to carry out initiatives like this (needn’t remind you of my attempts at organising an international society!), without leadership from Paris. Again Mr. Todt, it’s not because you gave your mates fancy titles that they have, by magic, acquired competency in this field. Motorsport medicine is stagnating, and will continue to do so as long as there is a total lack of leadership from the top.

Odds and ends

Well it’s been a long time, hasn’t it? As always, I follow your comments closely, both here and on Twitter, and I think it’s time to address some of the points that have been raised recently, and perhaps clarify a few definitions (nothing new here, pretty sure this stuff was covered in earlier posts) – simply because I’ve got a feeling that we’ll be hearing some of them at some point in the not-distant future. More on this later.

WEIGHT LOSS

I’ve been asked about the report that Michael has lost 25% of his pre-accident weight.

This is entirely possible, and in fact, probable. A few factors explain this. First, the initial injury, operations, and those few harrowing weeks when Michael’s life itself hung in the balance, minute-to-minute. This kind of situation subjects the body to a tremendous level of stress. Not psychological stress, mind you, but physical stress, accompanied by liberation of massive quantities of stress hormones. These hormones evolved for the “fight or flight” response, and were designed by evolution to promptly mobilise fuel for action. They do this by causing (among other things) breakdown of muscle to form amino acids, which the body can use as fuel. The problem is that when these stress hormones remain present for too long, it becomes very difficult if not impossible to replace the lost muscle mass, at least in the short term.

So Michael’s muscle mass was already fairly significantly depleted by the time sedation was stopped. At this point, what is usually called disuse atrophy starts eating away at the muscles. Since a patient in coma has very little, if any, movement, the muscles lose the mechanical stimulus that is a major factor in maintaining them during normal day-to-day activity. And although coma patients get intensive physical therapy, this is aimed at preventing the joints from stiffening, not at maintaining (or building) muscle mass.

There may well be a more subtle contributing factor as well. You see, the normal brain kicks out growth hormone at night, during our sleep. This hormone helps the body to build and maintain itself, notably by helping the muscles take up protein. It is entirely possible, even probable, that this pulsed pattern of secretion is lost (any neurosurgeons reading this, or neurologists, anyone in the know, just jump in!) in patients who no longer have sleep-wake cycles. It’s even possible that secretion of the hormone falls to very low levels chronically. This would also have the effect of taking away an important “trophic” stimulus.

Happily, the consequences are not particularly dramatic, at least immediately. To be blunt, a patient in coma doesn’t really NEED his or her muscles . . . with the exception of the diaphragm. The diaphragm, which like the heart is pretty much always active, resists atrophy rather better than other muscles, but it does atrophy. And having a machine doing the breathing for you is one of the best ways to see how disuse atrophy affects the diaphragm too. Unfortunately, and assuming (as I have until now) that Michael is being ventilated by a respirator, there is probably some degree of diaphragmatic atrophy at this point.

Now remember where Michael is coming from – one of the fittest, toned, and conditioned 45 year-old men on the planet. This means that if and when he can be weaned from mechanical ventilation, re-training his diaphragm shouldn’t be problematic. As for the rest of his muscle mass, should he awaken, the same ferocious appetite for pushing himself will no doubt lead him back to most of his former superb condition.

TRANSFER

I’ve also been asked why Michael hasn’t been transferred to a unit closer to his home.

Obviously I have no idea of the answer to this question, but several factors need to be considered.

First, from a medical point of view, once we’re out of the phase with dramatic and life-threatening elevated intracranial pressure, and barring other significant problems causing physiologic instability, the patient can be transferred arbitrarily far. The transfer needs to be prepared carefully, of course, but even hours-long flights are possible with intubated, ventilated patients such as Michael. So why is he still in Grenoble? I’m basing myself on the notion that Michael is still in the Intensive Care Unit, and is still being ventilated.

First of all, it clearly shows that his entourage is totally confident with the quality of care Michael is receiving.

It’s important to remember that Intensive Care Unit (ICU) beds are a very limited resource. Every day intensivists are asked to admit critically ill patients to units whose beds are all filled. This requires TRIAGE – deciding who has the best chance of being improved by being admitted to the unit. The “chronically critically ill”, patients like Michael who depend on technology (a ventilator) to stay alive, are a tremendous conundrum for ICU personnel. As time goes on (more detail below), it becomes less and less likely that Michael will emerge to any significant extent. Therefore, I think it is inevitable that should the status quo continue, the ICU staff may well, at some point in the not-distant future, decide that the patient they’ve just been asked to admit has a higher need for that bed than Michael, given his clinical situation and prognosis. This then could be a reason to organise a transfer – to a private clinic, or to an ICU-like environment that his entourage could build at his home.

Lastly, as I’ve mentioned furtively here and there, I think that serious lapses in judgement were evident during Michael’s initial management (I have this from usually impeccable sources who have access to this information). Because these lapses could (and almost certainly did) worsen the outcome in Michael’s case, it is possible that the staff at Grenoble feel duty-bound to NOT place any pressure on the family to transfer out, despite the terribly dismal prognosis . . . because of the clear (but unquantifiable) contribution of medical misjudgement to that prognosis.

(RE) DEFINITIONS

I think it’s useful to look at a few definitions again, briefly, for when this all starts to get talked about in the press, as I’m sure it will be fairly soon.

Brain Death: A brain-dead patient is dead. There is objective, demonstrable, and irreversible cessation of ALL brain function. When you use arteriography (special x-rays that show the arteries and the flow in them) to look at the blood flow to the brain, you see that there is NO BLOOD FLOW AT ALL inside the cranial vault. There is no reaction to any stimuli except for simple reflexes (which originate at the spinal level), and the patient will not breathe spontaneously, even when carbon dioxide levels are elevated. There are no living brain cells in the skull. None. At all. Families do not have to approve disconnecting these patients, as they actually are no longer patients, they are . . . dead. These are the patients who become, under certain well-defined circumstances, organ donors. Because the brain, all of it, is needed for the body to survive satisfactorily, the hearts of brain dead patients will not continue to beat more than a few days or weeks (a few cases of longer circulatory persistence have been described but this is vanishingly rare), despite the most aggressive treatment possible.

Coma: coma is defined as a state where the patient shows neither wakefulness nor awareness. So the patient in a coma has closed eyes, shows no evidence of a “sleep/wake” cycle, and shows absolutely no sign of any awareness of (or interaction with) either the environment or him/herself. Even painful stimuli fail to cause meaningful interaction. Depending on the areas that are damaged, these patients may or may not breathe on their own. That said, they will essentially always be intubated, and then tracheotomised, to prevent episodes of airway obstruction caused by the brain being unable to coordinate the muscles of the tongue, pharynx and voice box. They are initially fed by a tube passed through the nose to the stomach, and later (as is no doubt the case with Michael) by a tube placed directly into the stomach or small intestine through the abdominal wall. Usually a coma is defined as persistent when it has lasted more than two months after the precipitating event. For info, I assume this is Michael’s current status.

Whereas brain death is inevitably followed by circulatory death within days to weeks, patients in a persistent coma have somewhat brain function, especially in areas associated with maintenance of physiological stability (body temperature, blood pressure, water volume, etc). This means that the life expectancy for a comatose patient who does not improve neurologically is measured in months to a relatively few years. Once again, the brain is necessary to integrate those of the body’s activities which contribute to a normal lifespan.

Persistent vegetative state: here we must distinguish two things that almost always go together: wakefulness and awareness. Patients in a persistent vegetative state show signs of “wakefulness”, in that they have periods of spontaneous eye opening, and can even show cycles that resemble sleep-wake cycles. They are, however, unaware. There is a total, rigorous lack of any sign of self awareness (including pain, other than reflex responses, thirst, etc) or of the environment. These patients often breathe for themselves.

A vegetative state is defined as persistent when it lasts two months after the precipitating event. As we’ve mentioned previously, the longer one remains in a vegetative state, the less the likelihood of emerging, and the higher the chances of severe sequelae if the patient does in fact emerge. Most definitions consider the vegetative state to be permanent one year after the injury.

Patients who are in a persistent/permanent vegetative state have lifespans that are measured in months to a few years. This depends on baseline function (extraordinary in the case of Michael, of course), the quality of nursing care, and other imponderables. They usually die of respiratory or urinary infections. Longer survivals have been described, but are exceptional.

Minimally conscious state: here, as with the vegetative state, there is wakefulness. But here, there are signs, inconsistent, variable, but clear, objective, and reproducible signs of awareness: interaction with the environment and/or of self. Like what? Eye tracking, motor responses, smiling, turning the head consistently to voices, etc. Or appropriate reactions to stimuli. This state can also be persistent; it is significant because it represents the first stage out of the vegetative state on the continuum towards normal consciousness . . . and the first interactions the entourage sees from their loved one.

Minimally conscious patients also have a severely shortened life expectancy, but not quite as dismal as for “deeper” levels of disordered consciousness.

PERSONAL NOTE

I always knew Michael was adored. I spent years at circuits drenched in red by the ferrari caps, flags, and shirts, and all of that for Michael. I’m still staggered by the depth and persistence of his fans’ love for him. And whereas I worried more than a bit about what was going to happen when and if really bad news got announced, I’ve realised that perhaps the lack of status updates has given us all a chance to move on a bit, to process what’s happening, and to start to . . . detach. And I think this is probably one of the unexpected “benefits” to the media strategy chosen by Michael’s family. Somehow, I get the feeling that people are going to be ok, no matter what happens, because they’ve now had the time to process this all. I just regret that to get here, you’ve all had to work through feeling abandoned. That will go away too. I hope.

Only a miracle

So now the Telegraph is reporting that the doctors caring for Michael have told his family that “only a miracle can save him”.

1) doctors, no matter their spiritual bent, do NOT talk to patient’s families about miracles saving anyone. Ever. From a practical viewpoint, this gives a patient’s family absolutely NO useful information on which to act. It provides hope, yes, but not for anything with any medical reality. And this hope will then cloud all subsequent decision-making.

A statement like this is more than ambiguous – it lets each recipient interpret it in his or her own context, the opposite of clear precise information. What would the care team mean with a statement like this? Are they saying “let’s wait a bit more for the miracle”? Or are they saying “miracles don’t happen in reality so we’re pretty much out of hope”?

I can only guess that what this report means by “save” is “recover sufficiently to have meaningful interactions with his loved ones”. So you see why this is kinda a dumb thing to say. And why it is impossible for me to imagine doctors EVER communicating like this with a grievously injured patient’s family.

If something like this WAS said, I can only try to “reverse engineer” it, and from there consider what they were saying and how it’d be said.

1) If there is now clinical, radiologic, physiologic and other data that leads to the conclusion that a resumption of any meaningful consciousness at all is impossible (see? no mention of miracles), they would be VERY unambiguous with this. In a situation like this, there must be no guesswork – NONE on the part of the medical team, who need to put the data together and reach an unquestioned and unquestionable conclusion. In this situation, ANY ambiguity in communication with the family is disastrous. They will often cling to any hope left, and this conversation is going to be, tragically, THE conversation that finally (and gently and compassionately) needs to remove all hope. This is crucial. If the message is misunderstood, it will almost inevitably lead to major problems, conflicts and tension subsequently.

Let me just say here that medical ethics allow, and virtually require, doctors to refuse to provide treatments they reasonably consider to be futile. My neighbour cannot show up at the hospital and demand that a surgeon remove her appendix. And in the above situation, where there is incontrovertible evidence of damage so severe as to make resumption of consciousness impossible,  doctors can certainly undertake the process of “therapeutic de-escalation”. Even if the patient’s family insists that “everything be done”, if there is NOTHING left to be done, there is no requirement to do anything more. At that point the patient’s family can make other care arrangements. It’s obviously critical to avoid this kind of situation, so once again you see the need for perfectly clear, concise information, with no ambiguity. Families need time to accept this, whether it’s in intensive care, or oncology, or genetic anomalies, and so on. But with open honest and clear communication, this will happen.

Please note that this is NOT the situation for a patient in a persistent vegetative state, at least not necessarily. This is the situation for a patient whose condition is even WORSE. The essential point is that the impossibility of recovery has to be as certain as current medical science can be AND that this certainty be transmitted to the family.

2) if the clinical situation is desperate, but not without all hope, the family would be told this, with as close to numerical precision as possible. In a situation where there is hope, it mustn’t EVER be taken away. On the other hand, families need to know, at the most basic level, that most patients like this get better, or that a few get better, or that really VERY few do. That 60%, or 20%, or 1% get better. No talk of miracles.

As I mentioned a few posts ago, if this conversation has happened, if Michael’s family has been told that it is extremely unlikely that he recover “satisfactorily”, then it is quite possible that the “several steps of separation effect” between hospital personnel and the press could have led to this kind of language appearing in these articles.

And again, despite a day during which we’ve been told Michael is breathing on his own AND that it would take a miracle to save him, we know nothing more than we knew yesterday or the day before.