Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Memory - Outcome Predictions

Question:

Dear Kathy M.,

The son of a friend of mine is in a coma and the family is being told that when (if) he wakes up, he "won't remember anything." The doctors say the reason is that his brain stem was badly damaged. I'm inclined to disagree because he will blink when you ask him questions such as what football team he likes. You can say "Blink if you like such-and-such a team" and he will -- and we know it's the team he really liked.

Also when certain people come in the room and he hears their voices, his heartbeat and pulse rate go up. His Dad asked him to blink if he wanted to watch cartoons, and he did. His eyes will focus now and he watched TV for a short time. I don't think this would be happening if he didn't remember certain things. And, if he is remembering things now, why wouldn't he remember at least some things, when he wakes up?

Wilma A.


Kathy's Response:

Dear Wilma,

This question cuts to the quick of some of the serious issues we all need to deal with in the area of "outcome predictions." Doctors, neuropsychologists, and others make these predictions all the time!

They are made at various stages of the recovery process too, I might add -- not just when someone is in a coma. As a community of persons with brain injury, family members, and the professionals who are trying to help us, I hope we can start to make some progress in this area, because it's badly needed!

Whether the results of an outcome prediction is that a family buys a burial plot, or that a neuropsychology assessment deems a person "too impaired" to return to their old line of work, the fact is that these outcome predictions have real effects on the lives and futures of real people! Personally, I feel we need we would all be wise to rearrange our paradigms a bit, on the whole issue of outcome predictions for persons with brain injury!

Walking, talking "vegetables"

In my experience, and in the experience of many persons with brain injury with whom I work, too many of these predictions end up being way off the mark!

You would be amazed at how many stories I've heard over the years about the unlikelihood that a person will survive, let alone flourish (hundreds of stories by now, I would guess). On some of the e-mail support lists I'm on, we actually joke about the predictions persons with brain injury and their families were given about the likelihood they would either die or "become vegetables." From where I sit, I've never met so many walking, talking, intelligent, productive "vegetables"!

Since most doctors who deal with us in the early stages only work with people with brain injury during the acute stage of recovery, I seriously doubt they are aware of the progress people can make. If they were, they would not be so quick to make predictions like the one you heard. I know the medical team that worked with me early on has no idea what my life is like now!

Just last week, I spoke with the mother of a young man who told me she was advised to buy his burial plot when he was in coma (four years ago). Well. . . I met this young man at a two-day conference (which he attended the entire time, by the way). We joked about things, talked about his future, and when I asked him how his memory was, he proudly recited his activity schedule. He reads and writes, walks and talks, has some difficulties of course, and his short-term memory is poor. But he can evidently can learn and is motivated to be more independent, so his mother and I are now talking about "next steps." Hopefully we won't have to deal with that segment of the medical establishment which seems to want to argue that he may be "too impaired" to learn to take more independent care of himself, implying that it's as good as its going to get.

How these predictions affect all of us

As a person with brain injury and as an advocate for others, some of these stories make me very angry! Even though the doctors may be thinking they are doing families a favor by lowering their expectations, as it were, I'm confident that these kinds of predictions often inflict a profound pain and hopelessness on the family and the person with the injury! Some of these predictions mean the family and the person miss opportunities to explore helpful and productive strategies for recovery. They can also result in painful, ineffective and unnecessary "adjustment counseling" for the persons with the injury, as well.

I wish more of the focus were on all the practical things that can be done to help the person through the various stages of recovery. Also, that families were put in touch with other families and persons with the injury who have battled back and made it!

The good news is that our state Brain Injury Associations and many of the new e-mail support and discussion lists available on the Internet are more in touch with ways to get this information. Some of us are chipping away at the medical establishment (at conferences and symposiums, and the like), but these other sources may be our best hope until this kind of information starts coming from the medical community.

Many of the doctors I've talked to about this try to explain these predictions by arguing that they are statistically based and are motivated by the desire to not give anyone false expectations (or a favorite word is "unrealistic" expectations). While I understand this logic and this sentiment, I don't think it always has the effect they are reaching for, and it may be doing more overall harm than good.

Statistics

We often here that the people who beat the odds (their outcomes are contrary to the prediction) are "exceptions." Perhaps. I don't track "the statistics," which is what the medical community must be using. Frankly, based on the number of times I've personally seen or heard about the off-target predictions, I question whether the statistics they're using could possibly be accurate. If anyone knows of a long-term outcome study that is the basis for "the statistics,' please feel free to share it with me. I've looked for such a study and haven't been able to find one.

Examples

There are many examples of "beating the odds" I've heard of personally. There's Jenny, whose family was told she would likely be in an Alzheimer's type nursing home for the rest of her life (she just moved into her own apartment).

There's Barbara, who was never supposed to be able to practice law again (perhaps work again, in any capacity), who ended up representing clients in court under the ADA -- that is, until she decided to go back to graduate school to get her Masters Degree in Journalism.

And of course, there's the mom who actually had to fight to get her money back on the burial plot she was counseled to buy for her son! There are others!

When we get these "predictions"

When we hear that a person will not be able to do certain things, we need to ask precisely what is meant. When the doctor said he "won't remember anything" I would ask what this means. "Anything" recent? "Anything" past? "Anything at all"?

The next question would be on what basis this prediction is based. I'm curious, what the doctor's specialty is, who told the family this. Neurosurgery? Neurology? Physiatry? Neuropsychology? This might make a difference. Of course, there are differences in the experience and competence of individuals within each of these specialties, but each type of professional approaches brain injury from a different angle, too, and some medical specialties have more experience with long-term recovery than others, in my experience.

Having a healthy skepticism doesn't hurt either. Now, there's a fine line between being a healthy skeptic and being in denial or having false expectations. Getting to the truth in these matters is an art, I believe. And it takes time! Also networking. Also fact-finding and research! Healthy skepticism and hope go hand-in-hand, in my view. Coupled with knowledge about how others have battled back, outcomes may be possible about which the doctors may simply be unaware!

The battle back

After the family realizes that the person is indeed going to live, the next hurdle is finding productive, effective (and cost-effective) therapy, support and/or skills training that maximizes the person's cognitive potential. Physical therapy is usually available and is funded by insurance companies. Cognitive therapy or compensatory skills training is another matter!

A recent trend is for insurance companies to argue that "cognitive therapy" and "cognitive rehabilitation" is experimental (justifying their refusal to pay for it, of course). Those of us who have received good cognitive rehabilitation, however, know it works! It may take more TIME than the funding will pay for. The results may be more incremental than funders feel the cost justifies. And it may not be in the kind of straight-line path people need to see to justify plodding forward. Everyone (including the person with the injury) may run out of time, money and patience. But these are separate issues from whether or not cognitive therapy or cognitive skills training works!

All I can tell you is that if a loved one of mine were in the shoes of your friend and her son, I would be skeptical about virtually any and all outcome predictions I heard. I would talk to other families who have "walked the walk" -- particularly families who were given similar outcome predictions. I would network with families and persons with brain injury on one or more of the Internet e-mail discussion and support lists. And I would listen to the voice of common sense you are evidently hearing, Wilma.

Yes, your son's friend appears to be remembering things. Yes, this would indicate to me that he may be able to remember certain things when he "wakes up." Am I a doctor? No. Do I have any formal training in medicine, neuropsychology or speech pathology? No. But like you, I am a good observer and have learned to write awesome "Memory Notes." My experience as a person with brain injury who now helps others who have brain injury, is that you are likely right!

Hope this helps!

Kathy M.

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