Why talk about PVS recovery/misdiagnosis statistics?
Let me explain my reasons for bringing up these issues publicly.
My goal in bringing these issues to wider attention is to hopefully encourage people to hold the medical community accountable in several areas:
First, to study this issue more. There is much uncertainty, and many things we thought were certainties have been disproved. We obviously need more research in the area of consciousness, PVS and minimally responsive patients.
We also desperately need more research about medications and treatments that can help PVS patients recover more awareness and ability to communicate.
Secondly, to encourage a policy that living PVS patients continue to receive therapy and new treatments whenever possible rather than being relegated to a corner where they receive nothing other than simply being kept alive. In other words, treat every PVS patient as though they have at least some chance of recovery, even if small, rather than as though their chance is 0.
Research clearly shows that there is at least a small chance of recovery at the very least up to 36 months after injury. So don't treat living patients that have a chance of recovery as though they're already dead.
(I am choosing not to deal with the issue of when to justify the use or removal of specific treatments here, just saying don't treat them as 100% hopeless when they're not.)
Third, be honest with the families. Even a 1.6% chance of recovery is many times the acceptable 0.1% margin of error in judging someone completely unable to recover. Doctors should tell families the true chances and that there IS a chance, even if very small, of recovery. Instead, many try to push families into removing life-sustaining treatment by telling them the patient has absolutely no chance or almost no chance of recovery.
The difference between 0 or 0.01% chance and 1.6% or even a 11-14% chance is huge to some people. Even a 1.6% chance is significant. It won't seem like a big difference to some, but to others it will be hugely significant.
There is no reason not to give accurate statistics based on BOTH the original pool and the pool of patients with the same type and duration of injury as the patient currently has. People are smart enough to deal with that information and take both statistics into account when making their decisions.
Fourth, to encourage the development and use of more effective ways of allowing severely disabled patients to communicate and demonstrate awareness. This would lower the rate of misdiagnosis when patients actually are aware, but it is not plainly obvious to an outside observer.
Along with this goes higher standards in the amount and type of testing and observation before someone can be diagnosed as PVS in the first place. NOBODY should ever be diagnosed as in a permanent vegetative state by a doctor who has spent an hour or less with the patient, and certainly not only a month or three months after their injury. Yet this happens routinely.
Finally, I hope to encourage people to reconsider the standards used in removing life-sustaining treatment, and the judgments of valuation of life. I'll deal with this and some related questions in a separate post. I'm working on that one and will post it as a new article.
My goal in bringing these issues to wider attention is to hopefully encourage people to hold the medical community accountable in several areas:
First, to study this issue more. There is much uncertainty, and many things we thought were certainties have been disproved. We obviously need more research in the area of consciousness, PVS and minimally responsive patients.
We also desperately need more research about medications and treatments that can help PVS patients recover more awareness and ability to communicate.
Secondly, to encourage a policy that living PVS patients continue to receive therapy and new treatments whenever possible rather than being relegated to a corner where they receive nothing other than simply being kept alive. In other words, treat every PVS patient as though they have at least some chance of recovery, even if small, rather than as though their chance is 0.
Research clearly shows that there is at least a small chance of recovery at the very least up to 36 months after injury. So don't treat living patients that have a chance of recovery as though they're already dead.
(I am choosing not to deal with the issue of when to justify the use or removal of specific treatments here, just saying don't treat them as 100% hopeless when they're not.)
Third, be honest with the families. Even a 1.6% chance of recovery is many times the acceptable 0.1% margin of error in judging someone completely unable to recover. Doctors should tell families the true chances and that there IS a chance, even if very small, of recovery. Instead, many try to push families into removing life-sustaining treatment by telling them the patient has absolutely no chance or almost no chance of recovery.
The difference between 0 or 0.01% chance and 1.6% or even a 11-14% chance is huge to some people. Even a 1.6% chance is significant. It won't seem like a big difference to some, but to others it will be hugely significant.
There is no reason not to give accurate statistics based on BOTH the original pool and the pool of patients with the same type and duration of injury as the patient currently has. People are smart enough to deal with that information and take both statistics into account when making their decisions.
Fourth, to encourage the development and use of more effective ways of allowing severely disabled patients to communicate and demonstrate awareness. This would lower the rate of misdiagnosis when patients actually are aware, but it is not plainly obvious to an outside observer.
Along with this goes higher standards in the amount and type of testing and observation before someone can be diagnosed as PVS in the first place. NOBODY should ever be diagnosed as in a permanent vegetative state by a doctor who has spent an hour or less with the patient, and certainly not only a month or three months after their injury. Yet this happens routinely.
Finally, I hope to encourage people to reconsider the standards used in removing life-sustaining treatment, and the judgments of valuation of life. I'll deal with this and some related questions in a separate post. I'm working on that one and will post it as a new article.
Copyright 2009. All rights reserved.
Posted by purple_kangaroo at 3:35 PM[Permanent link]
6 Comments:
As I've posted recently, I do have some things going on IRL and haven't been writing much at all on my blog lately, in response to your posts or otherwise.
You may notice that I recently completely reworked a post because I agreed that some of your criticisms of the way I approached the issue were valid, and I've done that sort of thing several times in response to your arguments.
I am not ignoring you and will respond when I get a chance . . . but as I told you both in e-mail and on my blog, other things in my life besides blogging or discussing this particular issue are needing to take priority right now.
Robert--I think I've replied to all your posts on my blog up to this one. I will try to get to this one in the next few days.
Some of it is stuff I've covered and given support for in previous posts; some of it I will have to do a little more research on and that will take some time.
Thanks for laying out your comment so clearly, Robert. I'll try to do the same so I don't miss anything.
If I ever do inadvertently miss responding to a point, feel free to drop me a note. It was probably either unintentional or a differing understanding of what the most relevant points being discussed were.
First let me say that this particular post was supposed to be sort of a summary/follow-up to my other posts, so I didn't re-argue or provide evidence for points I'd already covered extensively in earlier posts.
PK: There is much uncertainty, and many things we thought were certainties have been disproved.
Robert: What uncertainty? And exactly which "things" have been disproved?
Are you actually suggesting there is no uncertainty in our understanding of consciousness itself, and of PVS? Almost every article on PVS, even the various studies and task force articles, mentions that there's still much we don't know about states of consciousness. We don't know exactly how consciousness and awareness work and we can't measure them, for one thing. That certainly adds some uncertainty to any discussion of consciousness.
A number of things have been disproved but the main ones I was thinking of were the fact that nobody was "supposed" to recover from PVS, MCS or a coma after a very long period of time, and yet we have well-documented cases where people have. Sergeant David Mack and Donald Herbert and Sarah Scantlin are a few examples.
Also, we have well-documented cases of people who were believed to have no consciousness and no chance of ever having it, yet they did. The children with hydranancephaly who are completely missing the parts of their brain that are supposed to regulate vision and awareness, for example, and yet they can see and are aware, disprove many assumptions about what is and isn't possible.
Almost every resource agrees that there is significant disagreement and uncertainty about the exact definition of a PVS or a vegetative state. All seem to agree about the difficulty of making a diagnosis of PVS in the first place.
Conciousness is a continuum, and so there are grey areas where you can't be certain whether someone is "in" or "out of" a state of consciousness that fits with a particular name or diagnosis. Several of the articles I've quoted noted that many doctors don't like to even attempt to make a determination of who is or is not in a vegetative state because of the nature of consciousness, but laws regarding life-sustaining treatment make this kind of judgement call necessary.
As the British Medical Association says, "Current methods of diagnosing pvs cannot be regarded as infallible."
PK: We also desperately need more research about medications and treatments that can help PVS patients recover more awareness and ability to communicate.
Robert: The only research that really looks promising involves the use of stem cells. And we all know how the President and the Republican party feels about this subject. (This is not a political statement - I'm actually pro-republican - I just think the party is terribley confused when it comes to "freedom" and the "right to life".)
Actually, there's quite a bit of research going on about various drugs and treatments that are showing promise. For instance, the Royal Hospital for Neuro-disability's INTERNATIONAL WORKING PARTY REPORT ON THE VEGETATIVE STATE listed 4 potential treatment areas that show promise: Structured Sensory Stimulation,
Sensory Regulation, Drugs (specifically cholinergic agonists, catecholaminergic agonist, and dopaminergic agents), and Brain/Brain Stem Stimulation.
I would also like to see something like the SMART program being more widely available and used. I think it would be an interesting possibility to have a law that some extensive and more reliable testing such as the SMART program or the guidelines laid out in some of the PVS task force reports should be used to try to more conclusively rule out consciousness before life-sustaining treatments are removed.
PK: In other words, treat every PVS patient as though they have at least some chance of recovery, even if small, rather than as though their chance is 0.
Robert: This philosophy, when applied to anoxic patients, is exactly why we we have so many PVS patients in the first place. At some point, we all have to admit that we can't save everyone and that death is a part of life.
Again, I was talking in regards to the way living patients are treated, and specifically said I was not in this case dealing with the continuing or removal of life-sustaining treatments. This article by Dr. Paul McHugh contains an anecdote about a Dr. A. that illustrates this well. I'm primarily talking about the way patients are treated and interacted with when their life-sustaining treatment is not being or has not yet been removed.
PK: Doctors should tell families the true chances and that there IS a chance, even if very small, of recovery.
Robert: "Really? I don't know how much experience you have with doctors, but the ones I've seen haven't been compelled to tell me much of anything. . . . my doctor doesn't have time to discuss every possibility with me. . . . What you really seem to be advocating is that people shouldn't trust a doctor's advice."
Well, yes and no. I think people are responsible for their own health and for getting the best information they can. I have had a lot of poor experiences with doctors and definitely believe in getting a second opinion on major issues, especially if something doesn't seem right about the diagnosis or prognosis.
Any doctor who doesn't discuss various available treatment options that would be appropriate in the patient's situation is probably not a very good doctor, wouldn't you agree? Especially if the patient is asking about alternative treatments. I believe the law requires that.
Even the best doctor doesn't know everything, though, and they are not infallible. I think it's dangerous to treat them as though they are. If I hadn't questioned my doctors and pushed for better treatment, I'd probably be in a wheelchair today.
PK: Instead, many try to push families into removing life-sustaining treatment by telling them the patient has absolutely no chance or almost no chance of recovery.
Robert: If you have any evidence to support this claim, I'd sure like to see it, because as far as know, doctors are usually the ones who want patients to remain on life support.
A few of many examples of doctors telling families a patient had no hope whatsoever when that wasn't true (some of these are related to PVS and others only to the issue of doctors giving no hope when hope might have been warranted): Charlotte Wyatt, the Webb family, Tony Sakac and myself. I've heard and seen many anecdotal accounts of this sort of thing.
When I was diagnosed with extremely severe fibromyalgia and CFS(along with a number of other health issues), my doctors just told me there was no treatment and the only things they offered me were classes on pain management and a handout on life in a wheelchair. Oh, and maybe narcotics if I wanted them.
Turns out there were lots of other treatment options available and my prognosis was much better than I was initially told. I went on from being barely able to function both physically and mentally to having a nearly normal life--but only because I refused to accept the hopeless prognosis I was given and pursued other opions. I'm not saying this is the case in all situations, but it does happen.
I've run out of time for now, so I'll have to come back to this later.
Hi, Robert! Just a quick note at the moment, but I wanted to clarify the difference between hydrocephalus and hydrancephaly or hydranencephaly (the terms seem to be interchangeable.
In hydrocephaly, the fluid in the brain compresses the brain but brain mass is still present.
In hydrancephaly there is essentially no cerebral cortex. The fluid is not compressing a brain that is there; there's no brain matter to compress.
According to what we know of the human brain, a person with hydrancephaly should have no awareness, vision or responsiveness whatsoever because they do not have a cerebral cortex. Yet somehow, inexplicably and contrary to all medical knowledge, some people with hydrancephaly can see, respond and be aware of their environment at some level.
According to this (extremely technical) article about hydrancephaly, the differentiation between hydrancephaly and other conditions that can cause the appearance of it (such as severe hydrocephalus) is that in hydrancephaly there is absolutely no cerebral cortex or cortical mantle.
I talked to the mother of a hydrancephalic child who has some awareness, and she calls it "life without a brain" which seems to be a pretty accurate way of describing it.
Many ethicists do not consider hydrancephalic infants to be truly human at all and some, such as Dr. Cranford, advocate that they should be used for organ donation. My earlier posts about hydrancephaly discuss in some detail several studies that follow hydrancephalic children who defied all odds and actually proved that they were able to see, respond, etc. You should check out those studies if you are interested in brain damage and functionality.
Here's an excerpt from the article linked in the first paragraph of this comment: The most common diagnostic problem is differentiation among hydranencephaly, extreme hydrocephalus, alobar holoprosencephaly and porencephaly. Some spared cortical mantle should still be seen with porencephaly and alobar holoprosencephaly. Serial sonograms may be necessary to evaluate an evolving intracranial process. Extreme hydrocephalus may be difficult to differentiate form hydranencephaly if a falx remnant is present4. The presence of even minimal frontal cerebral cortex, however, indicates extreme hydrocephalus instead of hydranencephaly4. At autopsy, differentiation can be made by examining the lining of hte cystic structures. Leptomeninges will be found in hydranencephaly while ependyma lines the ventricular system in hydrocephalus4. Magnetic Resonance Imaging may serve as an additional means for confirming the ultrasound diagnosis.
You can certainly tell that there's brain damage from imaging tests; I've never claimed otherwise.
What I've said and will continue to say is that you can't tell for certain a person's level of consciousness or awareness from their brain stucture.
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