What we were told about Hospice at the clinic

[ReneeM]

Yesterday, my husband went to his first clinic. It is a MDA/ALS clinic in southeast Michigan.

Everyone was very nice and kind and my husband did feel better after hearing everyone evaluate him.

I brought up the subject of Hospice because I see him going downhill very fast. And since I work, I wanted to see if it would help since he can no longer feed himself nor can he wipe himself after going to the bathroom.. He can walk only a few steps without assistance and is completely hunched over unless he uses a lot of energy to straighten up. Even though we do have family who has said they want to help...I wanted to get additional help to fill in perhaps 2-3 hours 2 or 3 days during the day while I'm at work.

However, the social worker didn't want to "go that route" yet because she said if we go into hospice that would stop home care for services like PT, Speech and Respiratory.. not to mention insurance wouldn't want to pay for a bipap or peg (which are probably coming soon)

I thought hospice treats ALS differently than the usual "hospice" case.

Karl's Medicare doesn't start until Feb (5 month wait). They also didn't understand why he doesn't have Medicare right away. My husband is only 57 and applied for SSDI and was accepted within 2 weeks but his case worker said benefits don't start paying for 5 months... including Medicare.

I apologize for all the questions, but I'm a bit confused from what they told me and reading all the wonderful things here that people have to say about hospice care.

 

[trfogey]

Given how recently your husband was diagnosed, I'm not surprised that the social worker discouraged you from going into hospice right now. Once you go on hospice, it's up to the hospice organization to manage your care and they are going to put severe restrictions on what medical resources that your husband will get (since they are paying for them). And since they are being paid a fixed fee for those services, they don't have the ability to bill to recover the costs of much of the specialized equipment and treatment that PALS need.

No power wheelchair -- way too expensive. My power chair cost three-quarters of what hospice gets paid for a whole year of services to me. They might rent you a manual wheelchair.

No AAC equipment (alternative and augmented communication, speech replacement devices) -- too expensive. The typical Dynavox AAC device costs about a quarter of what hospice gets paid for a year.

No computer accessibility equipment (headmouse, eyegaze, etc.) -- too expensive. Eyegaze costs as much as a Dynavox AAC device.

No PEG -- life-extending surgery. Plus, insurance/Medicare won't pay for both hospice and hospitalization in the same month for treatment of the "terminal" condition.

No BiPAP -- same as PEG (life-extending treatment). Not to mention that PALS need specialized BiPAP machines (S/T mode is a must), so standard sleep apnea BiPAPs (the cheap ones) are off the table.

The standard rule of thumb for PALS and hospice is to get all the expensive optional/ancillary equipment and the recommended life-extending measures (PEGs and BiPAPs) in place before going on hospice. Hospice care is comfort care for the person who is dying, not a replacement for active measures aimed at life extension or adaptation to disability.

By going on hospice at this point, you're essentially putting your husband at the mercy of the local ALSA/MDA loan closets for equipment that might be the difference in whether his quality of life is what you and he want it to be. You might want to check with a few other ALS families in your area have fared with loaner equipment before you decide to forgo getting your own. My experience with my local loan closet was horrible -- three cheap items requested and none were available. Your local groups may be better, but are you certain of that? I would be, if I were you.

If your husband goes on hospice at this point, you and he will pay a substantial price in aggravation, frustration, and heartache, as well as out-of-pocket costs that your insurance company or Medicare would have picked up prior to going on hospice. While things are still in flux, it's better not to box yourself in by adding someone else with veto power into the medical decision-making process, especially when that someone has its own agenda and financial considerations involved.

 

[Katie C]

Just to add to what trfogey said... this would be a good time to go over your insurance carefully to see what they do and do not cover. It varies widely. We happened to have Kaiser and since they have their own hospice we were able to retain access to Glen's neuro, etc through his entire illness. Other companies aren't going to have that, but perhaps will have broader options as far as hospice companies, adaptive equipment, etc. But a really good place to start is to know what you are and are not covered for.

 

[notme]

HI

THere is the 5 month wait on MONEY--but NOT on Medicare, I believe. Look at the ALSA site. They discuss just this issue.

 

[ReneeM]

Thank you all for your input. I have a better understanding of hospice versus medical care with my insurance carrier.

Notme.... Karl's SSDI approval letter came with his medicare card ... however is states that Medicare starts the same month your benefits start which is February... I looked this up on Medicare website and SS website... there is nothing to indicate that Medicare can start any sooner... because Karl is only 57...

If he were over 60 it would be a different matter.

Thanks again for everyone's input...we do have homecare coming next week to asses what he needs.

 

[Miss]

Medicare and SSDI payments do start at the same time. I'm not sure that would be any different if you were over 60. It would only matter if you were already 65.

 

[KC2U2]

check with the ALSA and social worker about state programs. I get 50 hours a week of home health care through a state program that has spots reserved for PALS, Gina can still work full time

 

[notme]

If you haven't done so, check into medicaid, too. It can help while you wait for the medicare. Most that qualify for medicare/SSDI also qualify for Medicaid.

Sorry--I must have misread something. I thought they'd waived the waiting period on medicare with ALS. I knew there was still the 5 month wait for $.

 

[Okie2]

Waiting period for Medicare is waived for ALS people. I got my ssdi letter and 3 days later got Medicare card in mail.

 

[Miss]

Check the start date on the medicare card. We got my husband's card within days of the SSDI filing, but it didn't start for 5 months.

 

[Okie2]

You are right, I had forgotten. I did not apply for ssdi until I had been off work for 4 months so it all came due at the same time. Money and Medicare.

 

[Jason's Dream]

What they are saying about surgeries and equipment in regards to getting onto hospice is correct. All of that has to be done prior to hospice. Because hospice is only given a lump sum from medicare and usually it is not enough to care for the patient, so certain things are not covered while in hospice. A cough assist machine is especially tricky in hospice. Also, were you to go to the hospice, you would need to get off hospice just to be seen, etc.

As far as the Disability and Medicare. My husband was 37 at the time of diagnosis. We walked the papers into the social security and he had disability and medicare within the month. Also it was "retrograded" back to the onset of his disease, which meant that any time he went to the ER to try to figure out what he had, etc, was all covered under Medicare. I would talk to your case worker at the social security office, as well as the social worker with the ALSA. The one social worker we have in Indiana is awesome and such an advocate for all the PALS in our state.

Hope this helps.

 

[mysticunicorn66]

My sister is only 54. She was already on SSDI prior to her diagnosis of ALS. When we applied for Medicare, they made her Part A effective date retroactive back to the day she was eligible for SSDI. Part B effective date is different though and is May of this year. Only because the local Social Security office was unsure of how to deal with ALS, I called the toll-free national number and spoke to that person to find out what I needed to apply for Medicare on sis's behalf. That representative told me that all I needed was a copy of her medical records and the name of dr, address of dr who made the ALS diagnosis and the date of onset. They made me an appt with the local office and also sent to the office the policy on processing claims for ALS people.

 

[michael0314]

Hospice policies vary from one agency to the next. My hospice nurse is getting me a bipap and has set up appointment with pulmanary doctor to get the settings. There are also arranging for a wheel chair van, its just a loaner but still not something normally covered for hospice.

 

[ReneeM]

Thanks everyone

Your information is so valuable. I don't know where else I would go to get all the helpful advice!