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Old 08-13-2015, 12:35 PM #1
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Default Hospice and Trilogy

So at some point my Pals is going to have to transition from home health to hospice. He already has a Trilogy that he uses all night and some during the day. Some of the hospice companies I have spoken with said he would need to transition back down to a bipap in order to receive hospice. That they consider the Trilogy to be too aggressive. Is that the norm? Should I keep calling other companies? I would just like some experience with this.

Thanks!
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Old 08-13-2015, 12:48 PM #2
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Default Re: Hospice and Trilogy

Yes keep calling. Different hospices have different rules. How hard it will be to find the right hospice is impossible to say as they vary so widely. Ask at your clinic , support group and/ or ALSA/ MDA to see if anyone has any leads
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Old 08-13-2015, 03:20 PM #3
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Default Re: Hospice and Trilogy

Drewsmom, not sure if you're talking about in home hospice care or in a hospice placement? Our in-home hospice Executive Director called Trilogy and had the local rep come and do a full staff in-service training the very first week Jesse was in Hospice.
We had called a local hospice facility just checking in case of emergency but they did not take patients on Trilogy's or Pegs. He/we prefer he stays at home anyway.
In our state there is a state Medicare office that certifies hospice services, both in home and outside facilities. You might check.
Keep calling, that's no excuse!

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Old 08-13-2015, 04:25 PM #4
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Default Re: Hospice and Trilogy

Trilogy is just the two machines, BiPAP and Vent, in one case. It can be set to just BiPAP so they shouldn't have a problem with that. The BiPAP settings may have more choices but it is no more "aggressive" treatment than other new brands of BiPAP. It is still BiPAP. One possible concern might be that if you have the Trilogy, transitioning to different settings with more ventilation support including full ventilation might be tempting even if it requires a trach. If hospice will be involved in paying for it, the higher price of the Trilogy will be a concern.
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Old 08-13-2015, 07:45 PM #5
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Default Re: Hospice and Trilogy

One of the agencies called me back today to say that they had to get "approval" for the trilogy coverage, but thought it was going to happen. They are going to come tomorrow to just go over the benefit of hospice and hopefully help my Pals see the need to go ahead and make the transition. The other 3 I called were much more difficult. One agency said we had to have 2 different physicians agree that he was ready for hospice and even then would not do the trilogy. Another company said they would have to transition him back down to a bipap but that he could not keep the trilogy.
Yes - this is just for in home hospice. Not a facility.

It's strange that they all kind of do their own thing.
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Old 08-13-2015, 09:34 PM #6
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Default Re: Hospice and Trilogy

Interesting - we were told hospice can come in at any time because of the nature of ALS. It doesn't follow the normal guidelines of 6 months or less.
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Old 08-13-2015, 10:14 PM #7
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Default Re: Hospice and Trilogy

My hubby has been on hospice for more than 18 months now. He has had his Trilogy for almost two years. He is on my employer provided insurance. We pay the monthly copay for the Trilogy that is separate from the monthly hospice copay.
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Old 08-13-2015, 10:36 PM #8
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Default Re: Hospice and Trilogy

When I my husband went on hospice, he already had the trilogy in place, something I learned on this forum, make sure all your gear is in place before hospice. Anyhow, they tried to tell me that they wouldn't cover the trilogy, and I kindly but firmly explained that unlike other diseases, ALS was terminal regardless of trilogy use, so it was a comfort measure not a lifesaving measure for my husband, and in the same breath explained that while I was exhausted from caring for my husband, I had enough energy to fight for him if they wanted to take it away. I also explained that since there are so many hospice companies to choose from, I was sure I could find one that would cover it. They left it alone and didn't give me any more grief over it. Be tough, and the key I think is the comfort aspect of the trilogy settings.
Good luck!
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Old 08-13-2015, 11:31 PM #9
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Default Re: Hospice and Trilogy

Drewsmom, if you both like the hospice and want them to help you, by all means. But no one "has" to transition to hospice. Not everyone does. If your PALS does not see the "need" at this moment, it is not something I would push, unless you can identify something in his current care that only hospice can address. That doesn't sound like the case. Researching agencies isn't the same as signing up.

It comes down to what you both agree what is most important...how will you get there? If hospice is part of the near-term answer, so be it. But then it is not a necessity, only an informed choice.
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Old 08-14-2015, 09:22 PM #10
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Default Re: Hospice and Trilogy

I'm a bit stunned and sorry to say this as it sounds harsh but:
Do these hospice agencies think that if they take over services and say no trilogy they are doing him a favour by simply helping him go fast?

I hope you can find one that will work with you if you want to use hospice. I really like how Grace got the point across, I would try that!
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Old 08-15-2015, 01:25 AM #11
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Default Re: Hospice and Trilogy

Tillie, the hospice thing here is heavily Medicare-driven and the original paradigm was for cancer, later AIDS. So they are not used to BiPAPs much. The spinal cord injury pts and other neuro dz tend to go back and die in rehab facilities/acute care/SNFs so again hospice is not as familiar w/ respiratory support. COPD is usually more oxygen and honestly, BiPAP is under-used in that group.

So, literally, a lot of hospices don't know much about BiPAP and whenever there's a knowledge gap, their reflexive concerns about reimbursement (it's a very torturous thing) can kick in. I don't think anyone in a legit hospice wants someone to jettison equipment and die faster, since they get paid by the month. I will only say that no one should rely on hospice to adjust the BiPAP.
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Old 08-15-2015, 02:54 AM #12
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Default Re: Hospice and Trilogy

Thanks Laurie, I admit the systems you all have to work through over there really confuse and overwhelm me sometimes!

I thought that if you already had that equipment when going on hospice they weren't reimbursing anything. I admit I don't understand it at all
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Old 08-15-2015, 07:07 AM #13
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Default Re: Hospice and Trilogy

A lot of equipment from medicare is rented Tillie or rent to own rather than bought for us outright so if that is the case hospice or the PALS would need to keep paying the rental
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Old 08-15-2015, 09:30 AM #14
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Default Re: Hospice and Trilogy

I studied health administration in a master's program that I dropped after Krissy died. We studied different healthcare systems around the world.

The US doesn't have a "system" at all, Tillie. A significant minority of Americans, millions of us, have no medical coverage whatsoever and so only see a doctor when we go to the emergency room. A lot of poor people go to ER's for tiny things that could have been easily prevented. Then they get sent an expensive bill and can't pay it. "Medical bankruptcy" is a real problem in America.

A year after Krissy died. I found a DME company on my national credit report. My credit rating was lowered, thus leading to denial of credit and high interest rates. I called the company and discovered that I was supposed to be paying monthly rental fees for a BiPap. I found the mask in a box in the garage and mailed it in with several hundred dollars--enough to pay for the thing!

Most of my life, I had no problems with healthcare because I was covered by the military. But with ALS, doctors and DME companies sent bills not only to the military (Tricare), but also to the VA and also to Medicare. Medicare doesn't cover the whole cost, so I was in a quandary wondering how to pay bills. Many times I just gave up and paid cash to stop the frustration. And in the US, medicine is expensive.
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Old 08-15-2015, 02:25 PM #15
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Default Re: Hospice and Trilogy

I came across this site a couple of weeks ago that may be helpful: hospice patients alliance.org

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