Old 03-11-2019, 06:35 PM #1 (permalink)
dldugan's Avatar
Member
 
Join Date: 2018
City: Lafayette
State: Indiana
Country: US
Diagnosed: 09/2018
Interest: I have been diagnosed with ALS.
Posts: 174
dldugan is on a very distinguished roaddldugan is on a very distinguished road
dldugan dldugan is offline
Member
dldugan's Avatar
Join Date: 2018
City: Lafayette
State: Indiana
Country: US
Diagnosed: 09/2018
Interest: I have been diagnosed with ALS.
Posts: 174
dldugan is on a very distinguished roaddldugan is on a very distinguished road
Default Trilogy in Hospice??

I recall seeing a couple of posts saying hospice is not a possibility if one is on a BiPAP or CPAP. Is that correct.
dldugan is offline   Reply With QuoteReply With Quote
Thanks from
ReginaS (03-14-2019)
Old 03-11-2019, 06:41 PM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,960
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,960
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Trilogy in Hospice??

It depends on the hospice and some will not do trilogy even though they allow other non invasive ventilation.

You need to interview the hospices and see. The general rule is you can’t be trying to treat/cure the illness that you are getting hospice for. You can be treated for comfort / symptoms. I would argue respiratory support is a comfort measure but not all hospices see it that way
Nikki J is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to Nikki J For This Useful Post:
dldugan (03-11-2019), ReginaS (03-14-2019)
Old 03-11-2019, 06:46 PM #3 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,970
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,970
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Trilogy in Hospice??

No, it's not.

The only variable is that some hospices are squeamish about the Trilogy, since it can also be used with a trach, and they may need education.

But a hospice will not fund a PAP if you don't already have one, so as with all big-ticket equipment, take delivery before you enter hospice.
lgelb is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to lgelb For This Useful Post:
dldugan (03-11-2019), ReginaS (03-14-2019)
Old 03-11-2019, 09:12 PM #4 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 3,099
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 3,099
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Trilogy in Hospice??

The problem is that Medicare pays for rental of Trilogies....indefinitely. Once on Hospice, will they still pay the rental?
KimT is offline   Reply With QuoteReply With Quote
Thanks from
ReginaS (03-14-2019)
Old 03-11-2019, 09:19 PM #5 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,970
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,970
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Trilogy in Hospice??

Yes. They continue to pay for rental of all approved equipment as long as the person continues to meet criteria for needing it, just as they continue to pay all medical costs not associated with hospice.
lgelb is offline   Reply With QuoteReply With Quote
The Following 3 Users Say Thank You to lgelb For This Useful Post:
dldugan (03-11-2019), KimT (03-13-2019), ReginaS (03-14-2019)
Old 03-12-2019, 04:41 AM #6 (permalink)
Lkaibel's Avatar
Very Helpful Member
 
Join Date: 2016
City: Minneapolis
State: MN
Country: US
Diagnosed: 06/2016
Interest: I lost a loved one to ALS/MND.
Posts: 1,166
Lkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant future
Lkaibel Lkaibel is offline
Very Helpful Member

Lkaibel's Avatar
Join Date: 2016
City: Minneapolis
State: MN
Country: US
Diagnosed: 06/2016
Interest: I lost a loved one to ALS/MND.
Posts: 1,166
Lkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant futureLkaibel has a brilliant future
Default Re: Trilogy in Hospice??

Brian was in hospice when he started - very briefly on Trilogy. It was not even mentioned as an issue.
Lkaibel is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to Lkaibel For This Useful Post:
dldugan (03-12-2019), ReginaS (03-14-2019)
Old 03-12-2019, 11:27 AM #7 (permalink)
Senior Member
 
Join Date: 2014
City: Tucson
State: AZ
Country: US
Diagnosed: 12/2013
Interest: I have been diagnosed with ALS.
Posts: 903
azgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud of
azgirl azgirl is offline
Senior Member
Join Date: 2014
City: Tucson
State: AZ
Country: US
Diagnosed: 12/2013
Interest: I have been diagnosed with ALS.
Posts: 903
azgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud ofazgirl has much to be proud of
Default Re: Trilogy in Hospice??

I am on hospice with trilogy. They actually have been quite attentive about sending out their rt to monitor my needs. New mask, hoses, checking pressure, etc,.
azgirl is offline   Reply With QuoteReply With Quote
Thanks from
ReginaS (03-14-2019)
Old 03-13-2019, 12:12 AM #8 (permalink)
ReginaS's Avatar
New Member
 
Join Date: 2018
City: --
State: --
Country: USA
Diagnosed: 02/2018
Interest: I am a caregiver for someone with ALS/MND.
Posts: 29
ReginaS is on a very distinguished road
ReginaS ReginaS is offline
New Member

ReginaS's Avatar
Join Date: 2018
City: --
State: --
Country: USA
Diagnosed: 02/2018
Interest: I am a caregiver for someone with ALS/MND.
Posts: 29
ReginaS is on a very distinguished road
Default Re: Trilogy in Hospice??

We have one hospice service in town that treats trilogy as 'life extending measure' and won't allow/pay for it. Another hospice service supposedly sees it as comfort measure. I still have to call them and confirm.

Does anyone have a list of good questions to ask hospice services when you need them for an ALS patient?

Thanks!!!
ReginaS is offline   Reply With QuoteReply With Quote
Old 03-13-2019, 07:32 AM #9 (permalink)
Member
 
Join Date: 2016
City: Pittsburgh
State: Pa
Country: US
Diagnosed: 11/2011
Interest: I am a caregiver for someone with ALS/MND.
Posts: 475
pittsburghgal is just really nicepittsburghgal is just really nicepittsburghgal is just really nicepittsburghgal is just really nicepittsburghgal is just really nice
pittsburghgal pittsburghgal is offline
Member
Join Date: 2016
City: Pittsburgh
State: Pa
Country: US
Diagnosed: 11/2011
Interest: I am a caregiver for someone with ALS/MND.
Posts: 475
pittsburghgal is just really nicepittsburghgal is just really nicepittsburghgal is just really nicepittsburghgal is just really nicepittsburghgal is just really nice
Default Re: Trilogy in Hospice??

Frank is now on hospice and there was no problem about the Trilogy. He also has a trach but does not intend to use the Trilogy in vent mode. They agreed with us that it was needed for comfort.

Sharon
pittsburghgal is offline   Reply With QuoteReply With Quote
Thanks from
ReginaS (03-14-2019)
Old 03-13-2019, 01:04 PM #10 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,970
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,970
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Trilogy in Hospice??

Regina, I was trying to find one of the recent threads where we listed questions to ask and haven't yet. Basically, what is your approach to helping out (who shows up to do what), what is the philosophy and practice around the end of life (is it "stop measuring morphine" on request, or still regimented, for example, and how closely they will work with you, the CALS, vs. their own protocols), if there is a religious component, does it mesh with yours, etc. And of course if the Trilogy is supported when used non-invasively.

I would test their ALS knowledge and comfort level. Whether by asking or stating, they should know that supplemental oxygen in ALS generally shortens life since it accelerates CO2 retention, but is sometimes used palliatively.

It is really about your comfort with them as with any health professional. You don't have to articulate everything as much as listen/watch. If the person they send to explain their services is not a clinical professional, that's a red flag, too.

Generally, not-for-profit hospices are best. And there is a database with federal information to compare them.

Last edited by lgelb : 03-13-2019 at 01:17 PM
lgelb is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to lgelb For This Useful Post:
dldugan (03-13-2019), ReginaS (03-14-2019)
Old 03-13-2019, 02:06 PM #11 (permalink)
New Member
 
Join Date: 2016
City: Houston
State: Texas
Country: Usa
Diagnosed: 1/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 76
ARCG is on a very distinguished roadARCG is on a very distinguished road
ARCG ARCG is offline
New Member
Join Date: 2016
City: Houston
State: Texas
Country: Usa
Diagnosed: 1/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 76
ARCG is on a very distinguished roadARCG is on a very distinguished road
Default Re: Trilogy in Hospice??

My husband is on hospice and has a trilogy, He had the trilogy before he went on hospice, it is non-invasive. Hospice has been a welcome addition as I had no medical background when this began and was basically responsible for educating myself, finding resources and forging a path, the last few years, pretty much on my own. It is nice to have a responsive group of medical professionals a phone call away.
ARCG is offline   Reply With QuoteReply With Quote
Thanks from
ReginaS (03-14-2019)
Reply

Tags
bipap, cpap, hospice, trilogy


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
hospice and trilogy Kathy K General Discussion About ALS/MND 0 02-19-2018 05:35 PM
Trilogy soonerwife General Discussion About ALS/MND 12 01-19-2017 07:12 PM
Hospice and trilogy BlueandGold General Discussion About ALS/MND 27 01-07-2017 01:21 PM
Medicare coverage of trilogy in hospice nebrhahe53 General Discussion About ALS/MND 12 10-22-2015 11:59 AM
Hospice and Trilogy Drewsmom General Discussion About ALS/MND 21 08-25-2015 09:40 AM


All times are GMT -5. The time now is 01:22 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016