Medical Disagreement - from real life, not hypothetical

Post by **Broomstick** » 2006-01-26 08:28pm

Please note: names and identifying information have been changed for all parties to protect privacy (and my continued employment)

I work in the US medical industry (and it is an industry, just like making steel or building houses or banking). I work in an area concerned with new medical technology, which is next door to the medical policy area. As a result, I occassionally relay questions/disagreements/other problems concerning both of the above subject areas. This is the one that came up today.

A concerned parent contacted us in regards to their child. Let's say they're father and son. Anyhow, the son is profoundly deaf. The child was fitted at a young age with a single cochlear implant, apparently without complications and with success in regards to improving his hearing. The health insurance company covered the cost of that implant, including the pre-implant evaluations, surgery, aftercare, and necessary rehabilitation/adjustment sessions afterwards. The boy is now five, able to speak intelligibly and understands much though not all spoken speech in quiet environments. Noisy environments are problematic, as they are for all hearing impaired people. The father states that he understands that his son has achieved a very positive outcome with the cochlear implant and is performing as well as any child with the underlying condition could be expected to perform.

Now the father wants a second cochlear implant for the boy. The child has already been screened by a teaching/reserach hospital and found to be a good candidate for a second implant. Meaning there is no medical reason standing in the way. His rationale for putting his child through another operation is that he believes a second implant will further improve the child's hearing, speech recongnition, and use of sound. He wants to do this as soon as possible, since the pre-adolescent years are absolutely critical to development of the brain, including the areas devoted to sound and language. The older the child, the less useful this intervention will be. In fact, the child is already past a great deal of the developmental "window" for these brain skills.

The hitch? Insurance won't pay for it.

The reasoning of the insurance company is more or less this: we pay for cochlear implants because there is no question that in patients meeting a specified list of criteria they do a very good job - they provide a level of hearing that markedly improves functioning. In fact, they are SO good at it that we even approve them for congenitally/early infancy deaf people who are far past being able to learn to recognize speech using one because it improves safety if people can perceive alarm bells, car horns, and so forth and take action to remove themselves from hazardous situations. We are happy to pay for very young children to have such an implant because they have the most to gain from it.

However, it IS a surgical procedure involving nerves and the skull. There are real risks. In addition to the usual risks of surgery involving bleeding, infection, and so forth, implanting a cochlear implant can and on occassion has resulted in damage to nerves controlling the face and the vestibular (balance) system. In all cases it forever destroys any residual function in the cochlea and other middle ear structures. These are not trivial risks, and of course we, as the insurance company, would be obligated to pay for the treatment/rehabilitation arising from any complications. There is a cost-benefit relationship to be considered here. There is no indication that a second implant greatly improves hearing. The few studies done indicate perhaps a 1-2% increase in speech recognition, and some improvement in sound recognition and directionality in noisy environments. While 1-2% is a real improvement, we are not convinced it is sufficient improvement to justify the risks and costs involved. Also, in the case of children, if you implant two such implants you may well destory the child's ability to utilize further improvements in cochlear implant technology down the line, in 10, 20 , 30 or more years when implants may improve significantly over the ones currently available... but if both cochlears have been surgically altered, neither may be suitable for next generation technology.

Thus, while we, the insurance company, were happy to pay for the first implant we will not pay for the second. You are, of course, welcome to appeal this decision. There are also clinical trials that may assist you in obtaining a second implant for your child. Also, you are, of course, free to raise the funds needed for this operation on your own and pay for it yourself.

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OK - why am I posting this? I thought it might be a nice change to post a real science/ethics/policy problem as opposed to a hypothetical. The department I work in deals with these questions every day. I thought it would be interesting to see where people stand on this one, particuarly the hard-of-hearing/deaf members of SD.net (even better if we have a cochlear implant user to weigh in)

So - are you with the father, trying to provide the very best for his child? The insurance company? Undecided?

The above information is all you are getting, by the way. Although I know somewhat more than I have revealed US medical privacy laws are extremely strict in these regards. Don't even bother to ask. If you feel you don't have enough information - tough. Because in real life in real medicine you never have all the information you want.

Discuss.

(By the way - this is not a test. There are no "right' or "wrong" answers)

wolveraptor · Post by **wolveraptor** » 2006-01-26 09:06pm

Obviously, I'm not going to trust numbers from the insurance company without listed, credible sources (I'm playing the role of the father here). Let's assume such sources are listed and that the issue is pretty much undisputed in the medical community: the hearing accuity increases by only a couple of percent.

However, you stated two things; that early implantation is critical to development and that later implants might be superior. If the first statement is true, then later implants become useless, or nearly so. It would probably be better to have a second implant unless risks are above what is recomended for a non-vital surgery. Obviously, I'd take the advice of my doctor for the last piece of information. If the surgery is relatively low-risk, then I would find the insurance company's arguments fallacious and demand that they pay for the second implant. Of course, I have no idea what I could do to actually make them, but whatever.

Molyneux · Post by **Molyneux** » 2006-01-26 09:09pm

I'm really undecided...they both have good points.

Post by **Broomstick** » 2006-01-26 09:13pm

Molyneux wrote:I'm really undecided...they both have good points.

I respect your right to be undecided... but do consider in real life that SOMEONE is really going to have to make a decision here. As I said, there are no wrong and no right answers. At least in this case, it's not life-or-death.

Post by **Broomstick** » 2006-01-26 09:20pm

wolveraptor wrote:Obviously, I'm not going to trust numbers from the insurance company without listed, credible sources (I'm playing the role of the father here). Let's assume such sources are listed

Just for the record - ALL the written medical policies on which my company bases decsisions upon list ALL clinical trials and other research upon which the decision is based, in standard citation format, as well as the rationale behind the decision. So the father would be able to go to a library or the internet and access that information on his own. So the father should be able to independently verify the numbers on which this decision was based.

From time to time we also have people inform us of studies we were not aware of (usually they weren't published at the time we were making our decisions) and in some instances those new studies have led to a changes in conclusions and policy.

GrandMasterTerwynn · Post by **GrandMasterTerwynn** » 2006-01-26 11:15pm

A gain of a couple of percentage points isn't worth the risks and costs associated with a second operation. If a second implant doubled the boy's ability to hear and comprehend, then the parent would be in the right to pursue the second operation.

The Guid · Post by **The Guid** » 2006-01-27 03:33am

The few studies done indicate perhaps a 1-2% increase in speech recognition, and some improvement in sound recognition and directionality in noisy environments. While 1-2% is a real improvement, we are not convinced it is sufficient improvement to justify the risks and costs involved

Can I ask what that kind of improvement actually means in daily life? Does that 1 or 2% mean that the child can hear people better etc. really or is the difference negligible?

mr friendly guy · Post by **mr friendly guy** » 2006-01-27 05:12am

Basically no.

My view is that if

a) the treatment is relatively cheap and not complicated with benefits dubious or small, then yes, since you don't have that much to lose

b) treatment is expensive/complicated but known to have significant beneficial effects yes

c) treatment is expensive/complicated but beneficial effects are dubious or known to be minor at best, then no.

I really can't see an overriding clinical need for this. Even assuming that the 1-2% is statistically significant (the OP doesn't mention things like p-values or measures to determine whether it is just due to chance).

By all means if the family wants to be enrolled in a study seeing whether this will help the child (assuming such a study has ethical approval) or are willing to pay for it themselves, then by all means let them. However I can't justify devoting resources to treatment where the evidence suggests very little gain vs costs and potential costs (ie side effects).

Post by **Broomstick** » 2006-01-27 06:17am

wolveraptor wrote:However, you stated two things; that early implantation is critical to development and that later implants might be superior. If the first statement is true, then later implants become useless, or nearly so.

I wish to clarify something, because I think either I wasn't entirely clear, or you didn't quite get it.

The "crucial to development" part involves the brain. If the brain doesn't hear, then it reassigns (so to speak) those areas to other duties such as visual interpretation or, if the child speaks Sign, to language processing, and various other tasks. (The cool thing is that this has been scientifically confirmed)

If the brain hears, then those areas develop as usual, for sound processing.

This all takes place in the brain, however - not the ears. One working ear is quite sufficient to prompt this development. Which may be why children reap the greatest benefit from the initial implant and don't gain nearly as much from a second.

Post by **Broomstick** » 2006-01-27 06:26am

The Guid wrote:Can I ask what that kind of improvement actually means in daily life? Does that 1 or 2% mean that the child can hear people better etc. really or is the difference negligible?

You can always ask....

How much difference 1 or 2% is going to make depends on the person. For a muscian, for example, that could be a significant and important difference. For anyone who has a need to interpret speech. For someone who is blind as well as deaf, even a marginal improvement in hearing could significantly affect them.

In other cases, it would be a difference that might show up on a hearing test but have little effect in real life.

The father did make the argument that having two gives you a "spare", so if one stopped functioning the child would still be able to hear. Of course, you then have twice the batteries and twice the maintenance of external hardware, which, under the written medical policies governing all prosthetics, the insurance company will be obligated to pay for. The significance of having a "spare" depends upon the robustness of the implants and I don't know how hardy they are.

Admiral Valdemar · Post by **Admiral Valdemar** » 2006-01-27 08:56am

As a person who can sympathise somewhat with the father (I, myself, have had multiple operations in the past to restore hearing to my right ear), I think I have to side with the insurance company on this one.

My reasoning? When I was offered the chance to have tricky groundbreaking surgery on my ear after a tympanoplasty using a skingraft from my neck failed (the ear drum perforated again, IIRC which was originally caused by a growth in the middle-ear that resulted in a total mastoidectomy), I refused on the risks presented to me by yet another ENT consultant. The position was thus; if I had new artificial middle-ear bones implanted made from a special polymer and regrafted my ear drum, I may attain proper hearing in that ear again. But, and there always is one with these, it would mean a sizeable risk in losing the 50% or so hearing I already had in that ear if things didn't go to plan (think the surgery was a good half-dozen hours in length) among with the usual problems with surgery. A hearing aid was even prescribed which was a horrible clunky thing as the NHS doesn't really give you the best unless you're devoted, which I surely wasn't as I happened to know a hearing aid does jack when the problem is with signal amplification to the brain, not sensitivity of my hearing cilia.

With that knowledge, I rejected the move despite my faith in the surgeon offering to do the op. who also worked in R&D of new ENT technology. I had originally been promised by a previous consultant that there would be no worry and that my hearing would be back perfectly or at least sufficiently to enable me to enroll in the RAF (ironically, the guy who said this was also an ex-RAF officer). That wasn't the case though.

So, back to this situation, I would side against the father given the risks involved. Whereas in my case I could have had significant hearing improvement that may came with a real risk still, here there seems to be too little a pay off for what could otherwise ruin the child's health as it is and take away any future chance at using new technology instead.

The insurance company is right to voice these concerns, and despite the father wanting what's best for his son - as any good father should - he is also blinding himself to the bigger picture. Having a facial palsy or losing getting an inner ear infection would be very real risks not worth a possible 1-2% hearing increase.

Elheru Aran · Post by **Elheru Aran** » 2006-01-27 11:48am

GrandMasterTerwynn wrote:A gain of a couple of percentage points isn't worth the risks and costs associated with a second operation. If a second implant doubled the boy's ability to hear and comprehend, then the parent would be in the right to pursue the second operation.

I agree with this. The boy seems to have regained some hearing with the implant he already has; one or two percent will not assist that significantly. Mind you, I myself would leap at the chance to regain *any* of my hearing; however, even I'd be leery of something that promised such a minimal benefit. It's just not worth the money they'd be spending. Better to leave it for now, and perhaps later when the technology's better, then go for it, but right now he seems to be doing fine (by your account) with the one he already has.

Incidentally, I was the subject of a cochlear implant operation back in... '94, 95 or so. Unsuccessful due to extreme ossification of the cochlea, left me with a large scar behind my ear and a dent in the bone, but aside from that nothing.

Well, I do occasionally still set off the metal detector at the airport...

Zero · Post by **Zero** » 2006-01-27 12:53pm

The potential benefits don't seem to outweigh the potential costs. It seems like there's a reasonable chance that the boy could lose significant functioning should something go wrong, and besides just that, 1-2% isn't a lot of benefit. Would the kid even really gain much from it? I believe the insurance company is in the right on this one.

wolveraptor · Post by **wolveraptor** » 2006-01-27 02:02pm

Why is the insurance company obliged to pay for batteries and ancilliary equipment to the 2nd implant, instead the surgery only? Also, how much does this type of surgery cost? What is the percentage of error or unwanted complications?

tharkûn · Post by **tharkûn** » 2006-01-27 05:43pm

I'm with the insurance company. The cost/benefit seems to side with not doing the second implant. A 1-2% increase should not be life changing and the arguement that future options might be limited carries real weight.

I date a deaf girl and have a good bit of contact with the ASL community (which grudingly includes a few implants); people can certainly get by and lead full lives without any hearing at all. The slight inceases don't seem compelling to me; I have yet to note terribly much difference among the almost deaf even though their level of hearing ranges far more than 2%.

mingo · Post by **mingo** » 2006-01-28 08:48pm

I have to go with the insurance company here too, for all the stated reasons already noted. One more reson though. The insurance company is a BUSINESS. They're trying to make money. This is how they continue to provide services for people other than this man and his son. Now, if we had national healthcare, were making a profit was not an issue, I might have more things to consider, as is I think the insureance company has been very fair.

Admiral Valdemar · Post by **Admiral Valdemar** » 2006-01-28 08:55pm

Even with an NHS, they don't throw money at things they feel would not get a return on investment, as Broomstick has mentioned elsewhere with a second prosthesis being cash out of your pocket usually, to use another example. While it may not be a business, a national health service has to stay in the black and get value for money for everyone, and not risk ruining a kid's future prospects and wasting money simply for an emotive father.

tharkûn · Post by **tharkûn** » 2006-01-28 09:46pm

I have to go with the insurance company here too, for all the stated reasons already noted. One more reson though. The insurance company is a BUSINESS. They're trying to make money. This is how they continue to provide services for people other than this man and his son. Now, if we had national healthcare, were making a profit was not an issue, I might have more things to consider, as is I think the insureance company has been very fair.

National Healthcare actually tends to fund less "elective" procedures than private insurance. With private insurance you can always bump up premiums to partially offset elective costs; in some cases you can even switch to a plan (with higher premium) that will cover elective procedures (though pre-existing condiition caveats make this rare and hard to do).

Under nationalized care the total amount of money in the pot doesn't increase in any way if you cover elective procedures; given that so many superior things are out there to spend money on (i.e. more mammograms, shorter wait times for seeing a GP, etc.) this scrapes the bottom of the barrel in terms of budgeting priorities. Good American insurers tend to pay for more than most nationalized health systems, the big problem is for those Americans who don't have good insurance.

mr friendly guy · Post by **mr friendly guy** » 2006-01-28 11:11pm

mingo wrote:I have to go with the insurance company here too, for all the stated reasons already noted. One more reson though. The insurance company is a BUSINESS. They're trying to make money. This is how they continue to provide services for people other than this man and his son. Now, if we had national healthcare, were making a profit was not an issue, I might have more things to consider, as is I think the insureance company has been very fair.

I have to agree with AV on this one. Even in national healthcare where profit isn't the issue, we still expect decent returns for our "investment".

Post by **Broomstick** » 2006-01-29 10:45am

tharkûn wrote: National Healthcare actually tends to fund less "elective" procedures than private insurance.

This is getting a little off track, but what the hell, it's my thread, isn't it?

I'm getting more and more uncomfortable with the word "elective". What the hell do we mean by that? Who gets to decide? Same with "medically necessary"

Is rehabilitation after a stroke (as one example) elective or medically necessary? How much rehab is "medically necessary" vs. "we won't pay for more than X sessions, even if you feel it would improve things immensely" And "elective" isn't the same as "cosmetic". I'd think of "elective" as "not necessary for survival, but could improve function." vs. cosmetic which is "make it look prettier".

On the other hand, even the Evil Insurance Empire acknowledges that sometimes "make it look prettier", while not necessary to improve function, sometimes IS important. Which is why, when I needed surgery on my face, the insurance company approved the use of a plastic and reconstructive surgeon rather than a general surgeon. Had that same nasty thing been anywhere else on my body it would have been the general surgeon and if you want the resulting inch and a half long scar (That's, uh, about 4 cm for you metric folks) to look better pay for it yourself. Because it was on my face, though - oh, yeah, let's make this look good. OK, somewhere in there is an acknowledgement that appearances count, especially on the face.

The point I think I'm circling around here is that circumstances do have an effect on what is "necessary" vs. "elective" vs. "cosmetic". I went back and re-read the policy on prostheses in general at my company and found it interesting that while they would pay for a sophisticated hydraulic knee for an artificial leg in a younger, active person they would require justfication for one in an elderly person - the rationale being that if you were looking at someone who through age and illness was so debilitated they weren't likely to leave their home much, if at all, they'd only pay for a less sophisticated prosthesis, one adequate for smooth level floors but not the sort of limb that could handle, say, hiking outdoors. The reasoning being that they'd only pay for that if the person was going to be using that capability. They also, as a general rule, will not pay for the new "C-leg" with the computer-controlled knee and adjusting gait - but mentioned they'd give consideration for people if it could be justified based on the unique needs of their profession. Also (and this is interesting) if they had primary responsibility for a child or children under 6 years of age (if you don't know why - ask any parent) the insurance company would also consider the more sophisticated prostheses than they would otherwise cover.

This state of affairs is further complicated by the fact that while the insurance company overall might be willing to cover something, when they write the particular group-coverage policies the purchaser may elect not to have certain things covered, or to cover things that ordinarially aren't covered. So a particular employer (who is usually buying the health insurance) might opt NOT to cover certain treatments that most other purchasers choose.

Which is why the idea of making "consumers" into "more responsible users of health care" that the current administration is pushing is so bogus. For 90% of the people with any coverage at all, individuals do NOT have control over their health care coverage in the US. Because the individuals do not choose, their employer chooses what health care coverage they can have, and the only options are to either take it or leave it. If your employer decides to buy HMO coverage you have an HMO - and not any HMO in the area but one particular HMO you yourself don't get to pick out. If your employer elects one of those new high-deductible/savings-account plans, that's what you get. If your employer decides not to provide coverage you're just out and out fucked.

If you TRULY want to make health care into a free market system then you must untie it from employment - EVERYONE purchases their own policies independant of employers (with probably some provision made for the indigent and the incapcitated). But there is as little political will to do that in this country as to institute an NHS. Maybe even less.

tharkûn · Post by **tharkûn** » 2006-01-29 11:53am

This is getting a little off track, but what the hell, it's my thread, isn't it?

I was replying to another post, if ever I stray too far down the rabbit trail, feel free to call it it off, mistress of the thread.

I'm getting more and more uncomfortable with the word "elective". What the hell do we mean by that? Who gets to decide? Same with "medically necessary"

As am I. Like it or not we live in a superficial society which does value beauty and other things not needed to live a healthy life. Many things which are not "medicly necessary" will help you lead a better life. That doesn't change the fact that an insurance company has scarce funds for paying for all medical care, and even more limited funds for most NHS pools; and certain things simply are less important than others.

If you TRULY want to make health care into a free market system then you must untie it from employment - EVERYONE purchases their own policies independant of employers (with probably some provision made for the indigent and the incapcitated). But there is as little political will to do that in this country as to institute an NHS. Maybe even less.

I purchase my health insurance outside of my employer because I know too much about healthcare. Long term, I do not see how employer sponsored healthcare can survive. It will be increasingly harder to run on a money in/money out basis. The current US insurance system, ignoring the HMOs and the like for now, was more or less built up during WWII as an end run around wage controls. Like the now debilitating pension plans from the same era, the system simply cannot cope with modern labor reality.

drachefly · Post by **drachefly** » 2006-01-30 11:44am

That 1-2% -- was it percentage points or percent of hearing?

Like, if the first implant brought him to 10%, would the second implant bring him to 11-12% or to 10.1 or 10.2%?

If it's percentage points, then if the first implant left him at like 5%, then it's debatable. Otherwise, I'd say hold out for better tech.

Post by **Broomstick** » 2006-01-30 07:43pm

I purchase my health insurance outside of my employer because I know too much about healthcare.

How in the hell can you afford to do that?

Long term, I do not see how employer sponsored healthcare can survive.

Neither do I. I just hope we don't wind up with something worse.

Post by **Broomstick** » 2006-01-30 07:45pm

drachefly wrote:That 1-2% -- was it percentage points or percent of hearing?

Like, if the first implant brought him to 10%, would the second implant bring him to 11-12% or to 10.1 or 10.2%?

The measure used in this case was percentage of words comprehended using only hearing. The first implant resulted in the kid picking up about 50% of spoken language in a quiet environment.

A second implant, based upon current data, would increase his comprehension to about 51-53% word comprehension under similar conditions.

tharkûn · Post by **tharkûn** » 2006-01-30 08:39pm

How in the hell can you afford to do that?

I bought the policy the day I was old enough to sign for it. It also helps that I have no habits which increase premiums. When I have to meet with my agent I come with a small binder full of the relevant acturial numbers. I also have an odd deductable which doesn't kick in for PM, but scales up quite high before taking over full coverage (and I keep ~.8 times everything I'd need to pay in rolling CDs earmarked for emergency).

Aside from that, frankly it is expensive and is the second largest line item (third if you lump all investments togethor) in my budget. However I view it as an investment. Running the numbers; good healthcare young compounds at a phenomenal rate when I reach retirement. I only have one body, it is extremely costly to fix, and I'm willing to pay to keep it going strong.

Neither do I. I just hope we don't wind up with something worse.

Aye to that. Right now I learn towards the Singapore model, with some reservations, but I'd take Canadian over going after either the British model or some of the more idiotic libertarian ones.