Status
Not open for further replies.

Orloppig77

New member
Joined
Mar 24, 2018
Messages
7
Reason
CALS
Diagnosis
05/2017
Country
US
State
NC
My dad was diagnosed in May last year. Within 3 months he was in a wheelchair and 3 months after that his speech started to go. He is now in the end stage - no speech, no arms/legs, and unable to swallow. His FVC was 24% in January.

He had been using the trilogy mask at night, but over the last few weeks he started wearing it during the day. He's now unable to stand more than 30 seconds without the mask.

He is DNR, did not want tracheostomy ventilation and is hoping to pass as peacefuly as possible from respiratory failure, as opposed to something more painful like a pulmonary embolism or mucus plug.

My question is a difficult one. I'm wondering if that type of passing is possible as long as he wears the trilogy 24/7? My understanding is that it is programmed to deliver a certain volume of air with each breath.

Over the past few days he makes gagging sounds when we have to remove the mask (for suction, cough assist, etc.).

We decided against hospice because they said they would remove the trilogy and just dope him up on morphine. They also didn't cover some of the other machines he relies on.

Thanks for any guidance
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,263
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Very sorry about your dad, Charlotte.

If you skip any activity that entails removing the mask, that kind of passing is more likely sooner. However, the question is which would cause him more distress -- not getting suctioned or keeping the mask on; only he and you can decide that. And obviously he could have morphine prior to that point.

You mention a DNR order, but does he have an Advance Directive in place?

If you continue to remove clogs, and if the Trilogy is set with a backup rate (that's the setting where the machine will start a breath if he doesn't) or is on a mode where breaths are begun automatically on a set schedule, he may linger for quite some time, depending on how much nutrition and fluids he's getting.

That being the case, presuming an Advance Directive is in place, some of us have helped nature provide that peaceful death when there is not a clog or choking, by essentially providing sufficient morphine for comfort, gradually decreasing the pressure that the machine provides, and then removing the mask when the person is no longer triggering breaths on their own and will not experience any air hunger.

It is also possible to achieve this without modifying the Trilogy, the price of less finesse being the need to use more morphine than otherwise.

These options are similar to what hospice was offering you, except it's more family-directed, the Trilogy is not removed until there is no possibility of that causing discomfort, and is a matter of hours rather than possibly days or weeks. Withdrawal of life support is not considered active euthanasia and is sanctioned by most major religions, if that matters to you.

Again, I'm very sorry that your dad is at this point and can address any questions you have. The best guidance is in your heart, and in the things he has said to you.

Best,
Laurie
 

Orloppig77

New member
Joined
Mar 24, 2018
Messages
7
Reason
CALS
Diagnosis
05/2017
Country
US
State
NC
Thank you so much for your insights. He is using S/T AVAPS mode in the trilogy. Do you know if that setting provides a backup rate? Where would I check for that? I thought it only assisted him whenever he initiated a breath. We had always assumed that one night he would just stop initiating breaths and pass. I didn't realize the machine would take over.
 

Jhill

Distinguished member
Joined
Mar 13, 2016
Messages
166
Reason
Lost a loved one
Diagnosis
03/2016
Country
US
State
PA
So sorry you’re going through this with your dad.

My husband died six months after being diagnosed. At the end he was the same as your dad, not tolerating removing the trilogy for more than a few seconds. The day before he passed away he went into a comatose state. Late the next day we could tell the end was close so I choose to remove the dreaded mask. He passed away peacefully within a minute.

I hope this helps you.

Hugs to you
Joan
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,263
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
The "S/T" tells you that a backup rate has been set. So if his breaths per minute get below whatever the set backup rate is (usually 8-12), the machine will start initiating breaths (the IPAP pressure will flow into his mask often enough to make the breathing rate whatever the backup rate is).

That doesn't mean that he can't pass that way, since eventually he will be unable to breathe back out and retain CO2, but, as I say, it may be a while.

Like any of the other settings, you can change it. So hypothetically, you could remove the backup rate and leave all else the same. Or you could also reduce the AVAPS target, which determines how much air he gets with each breath. Often, shallower breathing is more comfortable nearer the end.

Let me know if you want help adjusting anything.
 

Orloppig77

New member
Joined
Mar 24, 2018
Messages
7
Reason
CALS
Diagnosis
05/2017
Country
US
State
NC
We also have a cough assist machine that he uses about 3 times a day (trying to avoid pneumonia, mucus plugs, etc.); I guess that would clear out any residual CO2?

Do you think our ALS clinic would prescribe morphine? Or is that something usually only done in hospice?

The more I think about it, the more hospice seems to make sense. We have plenty of family and friends supporting us, so we didn't see that hospice was going to be much help before.
 

KW1234

Distinguished member
Joined
Sep 28, 2016
Messages
269
Reason
PALS
Diagnosis
10/2016
Country
US
State
OR
I am on hospice and still use my AVAP. You might want to check with other hospice providers. My pulmonologist prescribed me a big bottle of morphine, low dose, before I went on hospice. Thee hospice team also provided high dose morphine. It supresses my ability to cough so I only use the low dose occasionally when thd pain levels affect sleep.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,263
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
It is true that hospice agencies have different policies in re the Trilogy, and how closely they are willing to track with the P/CALS' end of life plan.

No, unfortunately the suction, CoughAssist, etc. do not clear out excess CO2, which builds up when someone can no longer breathe it out.

If you opt for hospice, interview agencies with these points in mind, as you are the customer and can choose between agencies if >1 is in network in your service area, or can opt out for the time being or entirely. It is your choice.
 

Orloppig77

New member
Joined
Mar 24, 2018
Messages
7
Reason
CALS
Diagnosis
05/2017
Country
US
State
NC
We have a pulse oximeter, which measures oxygen saturation, but I guess there's no easy way to measure CO2? How will we know if there is CO2 build up? Today he said he was short of breath, even though he was wearing the mask.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,263
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
CO2 buildup manifests in signs like sleeping a lot, confusion, headaches, irritability. There are tests for it but testing doesn't make sense in the hospice phase.

As I mentioned, the Trilogy is not a "set and forget" machine, and your dad has progressed quickly. Likely, his settings should be adjusted for more comfort, to avoid "air hunger" as much as possible. I will PM you with my email in case you want help with that, or you can call the agency that provided the machine.

Best,
Laurie
 

Orloppig77

New member
Joined
Mar 24, 2018
Messages
7
Reason
CALS
Diagnosis
05/2017
Country
US
State
NC
Thanks again for all your guidance.

Things have progressed over the past few weeks and he's unable to stand us removing the mask for more than 5 - 10 seconds. We take it off for cough assist, suction, washing out his mouth, etc. He's really not showing any signs of CO2 buildup as near as I can tell - no excessive sleeping or confusion.

Is constipation normal at this stage? How often is often enough? His diet is still 6 containers a day of Jevity, plus we're giving him coffee and prune juice...

At the end of the day it's very difficult for him to blink his eyes for yes/no questions.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,200
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Constipation is an unwanted side effect of inactivity, insufficient hydration, and some medication. I would suggest a laxative. You can also give him some powdered magnesium mixed with water.

I'm sure others who have or are having constipation and using laxatives will post exactly what they are using.

Coffee and prune juice are good, too.

Some PALS have had to get intervention for constipation.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,491
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Orloppig77 Ask his doctor about drinking mineral oil... if it is possible. It can be mixed with drinks. It's an old home remedy that has worked when other haven't... even prescribed ones. Faster than laxatives. And there are mineral oil enemas. Not all drug stores have them but CVS has them if there is one near you. Again, if possible.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,200
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
"The use of harsher laxatives should always be discussed with a primary physician. They include hyperosmotic laxatives (suppositories), which draw water into the bowel from surrounding body tissues; lubricants, which use mineral oil to coat the stool but should not be used with even the slightest swallowing issues; and stimulant laxatives. A successful laxative for ALS patients has been docusate sodium (50 mg) with sennosides (8.6 mg), the generic version of Peri-Colace, which is widely available and inexpensive."

From ALS International.
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock
No Thanks