Trilogy End of Life Settings

[CHathaway]

My 83 yo mom was diagnosed in July and has declined rapidly. She’s on the Trilogy 24/7 and is on morphine with hospice care. As she declines, it makes sense to me the Trilogy settings would be adjusted (reduced volume and BPM). Our RT has been very helpful along the way but he does not recommend any adjustments. Anyone have experience with this? I want her to be comfortable.

 

[lgelb]

I'm sorry about your mom, but glad she has you to watch for her comfort.

Yes, depending on how close she is to the end and how much morphine is on board, you can turn off or reduce the backup rate, and reduce the target volume gradually. If you watch the screen when she breathes, you can see whether the backup rate is being triggered, what percentage of breaths are being triggered by the machine, and what volume she is attaining.

When she is at the end, sleeping, and breathing very shallowly, with 100% machine-triggered breaths (if you still have the backup rate on), you can remove the mask and turn off the machine for a peaceful passage.

I will PM you in case you have other questions.

Best,
Laurie

 

[lynnbr2]

Only the Pulmonary Doc would change the Rx held in the Trilogy. Can you set up a televisit?

 

[lgelb]

Lynn, all CALS should know how and why to change the settings, and I help many people do just that. It's just another part of customizing care to disease progression and individual considerations. ALS is not a "set and forget" proposition, especially as regards respiratory support. In addition, when PALS who require continuous BiPAP have uncontrolled coughing or choking, it can be very important to adjust the machine accordingly.

I have been working with the OP for her mom's comfort.

Best,
Laurie

 

[Bestfriends14]

I would be hesitant to start messing around with settings without input from a trained professional. We had an individual on the forum who swore up and down that he had respiratory onset of ALS. He took it upon himself to get his own bipap and do the settings on his own. Well, he started waking up with headaches and he was getting quite bad side effects from the machine. Not surprisingly (he had no ALS symptoms), it turns out he did not have ALS and because he had messed around with a bipap on his own, he was increasing his CO2, causing CO2 build up; that is incredibly dangerous. I would hate to see your mum have any further issues than she already has. Comfort is the name of the game with ALS. Please be careful.

No disrespect, Laurie.

 

[lgelb]

The OP's mom has passed in peace, aided by a significant settings adjustment, so out of respect I am closing this thread.

As to the member mentioned, I assisted him with his purchase and adjusted his initial settings, after which he did not have headaches and found improvement in other respects. Though he does not have ALS, he has a pre-existing lung condition that is amenable to BiPAP.

But a mistaken ALS diagnosis is unrelated to the need to individualize BiPAP settings at the start of therapy in ALS, and adjusting them along the way, including at the end of life.

I have helped many PALS and a few other pts with this over the years, and will continue to do so, guided by an empirical scientific approach (I have worked in health care for >40y and have discussed these algorithms with pulmos and cardiologists). I agree that it is not a random process but it is one that can improve quality and quantity of life.