ok ellencee, i'd truly like your opinion

[lkc15507]

What is the name of your state? NA

I am currently working on a request for insurance approval of a Speech Generating Device (SGD) for a 59 1/2 yr old lady with ALS. She is bed confined and has little gross or fine motor movement left. She was placed on hospice care 1 year ago (hospice = 6 month life expectancy). Provider of the device refuses to rent the device & insists on a one time purchase. Evaluation by a speech pathologist indicates the patient can use the device (with difficulty) for both basic and advanced communication needs. My conserns are multiple:
1.) What defines basic communication needs for a hospice patient?
2.) Looking at definitions of "medically necessary", "custodial", and "treatment", is the SGD appropriate for a hospice patient?
3.) Given progression of the disease, ALS, how long will the device be appropriate?
4.) SGD is considered a true prosthesis rather than durable medical equipment. Is inability of speech secondary to a terminal illness a true speech disability (for which an SGD is an approved device).
5.) Is the SGD a "treatment"? I ask because hospice is palliative in nature rather than curative.

This will be unpopular, but
6.) Is an expenditure of $8,000.00+ for a potentially custodial device appropriate in a patient with a life expectancy of 6 months--on hospice?

I ask because I am truly torn. I want to approve the device as I would love this lady to be able to communicate with her family in her last days. But, by the terms of the plan--medically necessary, treatment, prosthesis, vs. dme and custodial, I cannot approve. As I say, my biggest problem is "treatment" vs. "hospice". You are good at research. Find me something, please.

lkc15507

[ellencee]

lkc15507
I'll be glad to help you research it and I just read a great deal on ALS.
I've done so much work with hospice patients, I can tell you that here, the SGD would be considered treatment the same as IV fluids and urinary catheters or central lines. None of those are curative but are necessary for comfort and in meeting the goal of hospice care, which is to die at home (or in a hospice center) and to die with dignity and peace. I'm sure it is an expense that hospice would have to plead with the insurance provider, though, and for the reasons that you stated.

That is a tough decision. I'll do some research and post again, though it may be tomorrow!

EC

[ellencee]

lkc15507
I found several resources for the criteria for approval of payment and based on the information that you provided, I'd have to say the person does not meet the criteria for SGD classified as treatment and does not meet the criteria for SGD when classified as DME, either.

This site may help you in making your decision:
[url]http://www.tricenturion.com/content/Doc_View.cfm?type=lmrpArch&File=SPEECH~1.HTM[/url]

This device requires training in order to use it and practice in order to master the skills necessary to manipulate the device. I would infer that to mean that the potential for improvement in motor skills and cognitive skills was necessary in order for the criteria to be met.

From your stance, I'd make the decision to deny. From my stance as a volunteer, I'd see what the community had to offer this person.

EC

Ya'll know I gotta say "hi" . Hugs to you both! I haven't been around in months but got notification of some OLD OLD post, and it prompted me to visit around and just see what's been going on over here. I've truly been enjoying reading on freeadvice again! (first time back in months). You guys keep on keeping em straight!

hmmbrdzz

[lkc15507]

ellencee:

Thank you for your help. The link you provided lists criteria very similar to what we use, but, a couple definitions and specific phrasiology used in that link are clearer than many--I saved it and intend to use it. I had planned to check out the ALS Association, but had not gotten there yet. Your opinion of what I presented certainly prompted me to look much closer at that option today.

I do believe that this lady's family has been in contact with ALSA already and this is from where the recommendation for the SGD came in the first place. Unless I miss my guess, they need insurance determination / denial in order to qualify her for alternate funding. Rather than waste this lady's precious time futilely looking for a way to provide the SGD, I will do as I know I must and send adverse determination notice--quickly. Hopefully, that will allow ALSA what they need to supply the SGD. She doesn't have time to wait on a lengthy appeals process and I'm sure the provider is aware of this--i. e., I doubt they would waste their time unless they were aware of an alternate source of funding. I appreciate your help and honest input. It is very difficult to walk the "nurse vs. money" line and I can be subject to erring both ways. The nurse in me wanted to approve it enough that I fear I wasn't seeing the forest for the trees! That "outsider" opinion truly did get me looking in the proper direction today. In the meantime, I will continue looking into it in anticipation of an appeal. If you find more information, send it my way. Thanks again, and truce okay? I'll start behaving .

Hey hummbrdzzz (right number of m's & z's?)! Did you just fall off the face of the earth or what? Hope you've been well. Drop a line now & then. Good to hear from you.

lkc15507

PS ellencee--I just read the other post where we agreed I have to say--I agree completely! Regardless of my having been a bit ornery in the past, I wouldn't have posted you this question unless I thought I would get a good informative response. Take care and thanks again. lkc15507

[ellencee]

lkc15507
Truce is fine with me as long as we agree to keep sharing opposing viewpoints minus the personal jabs or any hostility. Sometimes, I need to hear the other side in order to see the whole picture and make a decision based on the total concept instead of partial concept. Lord knows, I can be stubborn, but when I do see the light, I follow!

I'm not finding anything to contradict the progressiveness of ALS or to contradict the need to have the ability to progress in order to successfully use a SGD.

I have made contact with a provider of SGDs and am waiting to hear back from the associated speech therapist(s) department. They are checking around to see what areas have donated SGDs or reconditioned SGDs (basically just cleaned according to guidelines and verified as functioning without problem). Joy, the proprietor, told me that for an ALS patient to successfully use SGDs, it isn't just one type that the patient will require but a succession of SGDs that meet the deteriorating level of functioning, ie. adaptive keyboard, to mouthpiece SGD, to passively placed SGD. Based on the information I gave her from your post, she did not see the expense being justified, either.

This is relatively new territory for me, so I'm learning as I go. Keep me up to date, please and I'll be sure to do the same for you.

Thanks,

EC

[lkc15507]

ellencee:

Of course we will continue to have opposing viewpoints! I wouldn't have it any other way either, but as I said, I will behave! LOL.

Now, that aside, you are proving to be a God-send here. In between taking the time for a little fun on the boards and checking back here, I am working not only on this case but many many other things. I'm sure that within the appropriate time frames, I could slog out some research, but not timely enough to benefit this lady. Heck, it's taking long enough for me to convince my nurse mind that this patient doesn't qualify--in the meantime, I'm wasting her time to find an alternate source of the SGD if what I suspect is correct about the ALS Association being prepared to fund / provide it. SGD's are easy enough for a stroke patient, head injury or what-have-you, but the hospice aspect really throws a new slant on this. If I'm wrong about the ALS Association being prepared to fund this, I really want ideas. Believe, me, I don't mind losing one like this on appeal--especially if it is in time to benefit this lady. But first, I've had to make sure that my interpretations of all those earlier points are correct before I can correctly issue adverse determination. Your information so far is wonderful in that area. As I said, based on your information and that which I already have, I think the best course is to make that adverse determination and move on to the next steps--helping find alternate funding / sources for the SGD and wait for an appeal. Keep the info coming though, if you find it. Even though I think adverse determination is inevitable, that still takes time and must go through internal procedure--I won't be sending it for several days even in the best of circumstances, so anything you find could be useable.

Also, what you mention about one device not being appropriate as the disease progresses had certainly occurred to me. I suspect that the device will need to be upgraded with progression. One other thing I am looking into is asking the network DME provider to purchase one of these devices for rental since the provider is unwilling to work with me in that area. Again, all info and ideas appreciated. PS--you're learning quite well as you go! I knew your research ability and knowledge would be invaluable here.
lkc15507

[lkc15507]

Well, I find myself doing my usual posting to my own post or clarification editing. But, I must. Someone reading is bound to question why would I mention rental of the equipment if the patient is ineligible for purchase of the equipment? Technically, rental is ineligible as well under the same criteria that purchase is ineligible. However, again, the source of my angst in this situation--hospice--MIGHT allow for a reasonable rental of this type of equipment under a hospice care plan, with the discretionary approval of the plan administrator. Believe me it would be much easier to recommend to the plan a rental price vs. a purchase price on this device. Such a discretionary recommendation would need to benefit both patient and plan. At a reasonable rental price, under a hospice care plan, simple employee relations might be a benefit to the plan. In a nutshell, the device would not be covered as a rental if not covered as a purchase, however, a reasonable recommendation could be made to the plan by the plan administrator.

lkc15507

[ellencee]

lkc15507
Your clarification tweaked my memory--I forgot to ask you a question.

Who is funding the hospice care? Some hospice care is paid by contributions and thereby only subject to the policies of the individual hospice organization. Some hospice care is funded by Medicare and thus subject to Medicare guideline approval of Hospice benefits.

Who's funding the Hospice benefits?

Thanks!
EC

[lkc15507]

Originally posted by ellencee
lkc15507
Your clarification tweaked my memory--I forgot to ask you a question.

Who is funding the hospice care? Some hospice care is paid by contributions and thereby only subject to the policies of the individual hospice organization. Some hospice care is funded by Medicare and thus subject to Medicare guideline approval of Hospice benefits.

Who's funding the Hospice benefits?

Thanks!
EC

Private insurance, self-funded employer group, ERISA plan. Same one making this determination regards the SGD. Let me throw this at you. Received today, dated 10/02/03, a hospice nursing eval / assessment -- indicates "patient using communication board to express feelings" .... "emotionally doing much better".

This is a Medicare approved hospice provider. Yet, as I said, funded at this time by private insurance. The patient does not have any other secondary coverage. This plan is the sole coverage. She did not qualify for Medicare disability or Medicaid. (Don't get me started on that as that is a whole 'nother ballgame!) Thanks again, ellencee for your interest and hard work. lkc15507

[ellencee]

well--here's a 180 degree turn--if she's using a communication board, then I vote for approving the next step in SGD and requiring that subseqent levels of SGD to be funded from another source like the ALSA--if that's an option for you.

With the speech pathology report, I inferred that she was beyond being able to use a communication board.

EC

[lkc15507]

Originally posted by ellencee
well--here's a 180 degree turn--if she's using a communication board, then I vote for approving the next step in SGD and requiring that subseqent levels of SGD to be funded from another source like the ALSA--if that's an option for you.

With the speech pathology report, I inferred that she was beyond being able to use a communication board.

EC

I think you may misinterpret my last information. She does utilize the proposed device as well as more primitive devices at this point in time. However, once again, the key question is whether there is expected improvement in the patient's condition by providing the SGD or is expected progression of the disease likely to preclude a decision of medical appropriateness for a hospice patient? I. E. treatment vs. palliative care? I think I have clearly stated that I am all for funding of this device from where ever it may be found. I just don't think it likely to be found in the pocket of her private plan. I apologize if my usage of "I' vs. a more appropriate term such as "we" or "the Plan" has caused angst. I personalize dilemmas such as this, but do not mistake, I am well aware of all parties involved. I will attempt to explain again, what I think you readily acknowledged earlier. Given this lady's disease progression, this "treatment" may well be inappropriate to her ultimate prognosis and care.

lkc15507

[ellencee]

lkc15507

OK--I did misinterpret your last post.

I can find nothing that disputes this resource: Lippincott Manual of Nursing Practice, 7th edition;and,I have read tons of information in other books and online.

Death usually occurs within 3-5 years of diagnosis.
Treatment is pallative and symptomatic.
Communication aids: mechanical speech aid or communication board; then, a code of eye blinks which must be developed while the patient can still use a mechanical speech aid or communication board.

Since the client has a communication board, a mechanical speech aid would be a duplication and would shift the emphasis away from the need to be prepared for the next, inevitable step--the eye blink code.

Is inability of speech secondary to a terminal illness a true speech disability (for which an SGD is an approved device).

--I believe the answer to that would be 'no'; in this situation,
it is a sign of the progression of the disease that indicates the level of deterioration of the lower motor neurons (nerves leading from the spinal cord to the body) and possibly the upper motor neurons (nerves leading from the brain to the medulla or spinal cord).

5.) Is the SGD a "treatment"? I ask because hospice is palliative in nature rather than curative.

--It is a pallative treatment and not a curative or potentially improving treatment. In this situation, I believe it would be a contraindicated pallative treatment if an additional SGD were provided instead of working towards the goal of maintaining communication as long as possible. In order to facilitate communication ability as long as possible, the client and the family need to be developing and practicing the eye blink code.

At this point, I would have to say 'that's my final answer'--denied; not in the best interest of the client and constitutes a duplication of SGD already provided.

I don't think you need to wrestle with your conscious any longer over this. I feel kind of relieved of any guilt, too, now that I accept that to continue SGD communication and fail to develop and practice an eye blink code is not in the best interest of the client.

Legally, I believe you are justified in making the denial. Morally, I believe it is in the best interest of the client for you to deny the expense.

What say ye?
EC

[lkc15507]

ellencee:

Thanks for the additional information / confirmation. I read that last post of mine today and it sounds a bit testy. I didn't mean it that way, I only wanted to get across that the decision has to be made in accordance with the plan, rather than how my other answers sounded like I was free to choose. Since you haven't been able to find anything to the contrary, nor have I, the decision must be to deny the charge for the SGD. I have looked further into the ALSA option and I am reasonably sure that they will be able to provide her one. That helps.

Well, I'm off to the woods for a few days. I intend to completely clear my head of decisions I don't like until Tuesday. Thanks again, ellencee.

Take care,
lkc15507