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Hi all, so my MILs oxygen is up to 16 liters now. She’s gone from 12 to 16 liters in less than 2 weeks. My husband holds the health care POA. Her home machines go up to 20 liters (she has 2 machines that go up to 10 with a Y connector). Tonight I asked him if he has talked to his mom to see what she wants to do if and when 20 liters isn’t enough, I mean assuming she doesn’t pass on before it gets to that point and he said he hasn’t. The POA says no to everything-no DNR, no life-prolonging treatment, no machines. If MIL eventually needs 20 liters and then it becomes not enough......should there be a conversation to discuss what is next? She wants to be home so if 20 liters isn’t enough, it would be require hospitalization, I don’t know if she could go to a nursing home though? Or is a conversation not necessary because of the POA saying she wants no life-saving measures? For a few days I thought she maybe had 2 weeks left but she keeps surprising us all! I didn’t think it would get to where 20 liters isn’t enough but it looks like it’s entirely possible she’ll get to that point. Seems to me maybe the kids should talk about this with her? Or do we just assume that when she starts struggling at 20 liters that we give her Ativan and morphine and whatever happens, happens? Do we turn off the oxygen at that point? I just hate not knowing and if this was my mother, I would ask her what she wants us to do when 20 liters is not enough. Or will hospice tell us what to do? No one seems to be asking questions here. The health aide was supposed to come clean MIL today and didn’t show up and did anybody call? Nope, they assume she will come tomorrow even though The schedule is MWF.

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I'm kind of confused. A POA is in charge when the patient can no longer speak for themselves (coma, stroke, dementia, etc.).

You asked your husband if he has talked with his mom about what she wants to do when 20 liters isn't enough. From that statement, I would assume that your MIL is still mentally sharp (without dementia). If that's the case, NO POA would have any say in what happens. It is ONLY when the patient can't speak for themselves.

Your husband is health care POA. I would guess that the other POA is financial?

Since she is on hospice, they can help with the medications that can calm her labored breathing. Morphine is good for that. Small doses work wonders.
I would speak to the hospice nurse or the doctor connected with hospice about the oxygen.

It seems your husband's family are in a state of shock. They aren't thinking clearly because they know their mother is dying. Maybe they're burying their heads in the sand. You can guide them by referring them to the nurse and doctor. I don't know if they'd appreciate you talking with MIL or not.

I'm not sure that your MIL will survive much longer with the increased demand for O2. I've never heard of anyone going past 20 liters.

I'm sorry for your situation. You want answers and everyone is in "zombie mode".
May the Lord peacefully take your MIL and relieve her of her dire need for oxygen, then give comfort to you all.
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Reply to SueC1957
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Dear worriedinCali,

I'm so sorry, I know how stressful this situation is. I'm with you in that I would like to have much clarification as possible. People change their minds even with a DNR in place. If it is possible, try to have that conversation. In my own case, I really wished I had talked to my father more. We made one assumption and in the end I wasn't really comfortable with it. I have some regrets and maybe I wouldn't have if I only tried harder to ask more, listen more and do more for him.

Thinking of you and your family during this difficult time.
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Reply to cdnreader
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Sue has good points. It kind of shows why it can be important for advanced directives. Home oxygen machines are inadequate to hospital wall oxygen. Why? As flow becomes higher, the machines are stressed and cannot produce 100% output. At that point, maybe 80%. So turning up the flow means nothing. You can get one of those fingertip Sat monitors to see what I mean. And if you cannot keep it above 88% , then she is suffering. They were never built for high flows. A whole lot of nursing homes do not have piped in oxygen and rely on home compressor machines and I hope you see the point.
I assume MIL has pulmonary fibrosis and those end stage issues are the most difficult.
I have seen first hand that opiods and ativan are given first to alleviate the feelings of shortness of breath, then the oxygen can remain on or tapered off.
Ethically, MIL still has the power to make decisions, but the suffering of experiencing she is drowning will not be as great if you can indicate that hospice needs to see her ASAP.
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Reply to MACinCT
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In spite of the opioid abuse epidemic now in place, the use of morphine can have good results in these situations. Somebody who needs that amount of oxygen, in my opinion is in respiratory failure. Intubation is the next step for life support, that extends life, not quality. Although there can be complications to morphine, do not underestimate its ability to sooo relax these patients. Just my opinion.
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Reply to pearyb
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I see from postings that hospice is requesting increased meds and a drop in oxygen. Do not get pulmonary fibrosis confused with COPD. PF is far worse with symptoms and she is suffering. Without meds to keep her calm, she passes with feelings of strangulation and that would not qualify as comfort care. Once the meds take effect, then the oxygen can be decreased while she remains comfortable. Think quality of care rather than quantity of life. Yes she will get sleepy and any quality visitations shoul happen soon, but please don't hold out for one person who needs to travel for hours to get there.The end is coming near.
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Reply to MACinCT
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Your last paragraph about stopping feeding her jumped out at me.

If he offers food and she accepts it then IMO he is doing the right thing, when she is ready to go she will not eat, not even to please him. You don't just decide to withhold food to hasten the end (I could have done that to my mother several years ago).
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Reply to cwillie
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I think that your MIL, your husband and his siblings and you need to have a conference with hospice and discuss the concerns that you voiced here. The hospice nurses are well trained in what to do in circumstances similar to yours and can give your MIL the best advice and assistance. Watching a loved one die is never easy especially when they die so slowly.

May the God of Comfort be with your MIL, you, your husband, and his family and give all of you the strength and wisdom to do what is best for your MIL.
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Reply to DeeAnna
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Worried,
You said;
"Tonight I asked him (your husband) if he had talked to his mom to see what she wants to do if and when 20 liters isn't enough.....and he said he hadn't."

"When I first asked my husband about it he tried to change the subject before I even got the complete sentence out!"

"At times I don't know if I'm being unreasonable and controlling."

It sounds like your husband doesn't want to deal with it or be POA and that he doesn't want your involvement.

You are a very responsible woman and have already handled nearly the same situation with your own mother.

It doesn't sound as though you both are on the same page. It also sounds like your husband is shutting YOU down.

It's hard to step back when something needs to be done and you are a responsible person, used to taking charge and getting things resolved.

But that sounds like what you need to do. You are pushing when they don't want to be pushed. As hard as it is, I would back off and let them handle it the way they want to.

I sympathize. I'm a nurse and I'm used to interviening for my patients also.
They don't seem to want your intervention. I'm sorry. It's your MIL who will suffer.
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Reply to SueC1957
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I was finally able to ask my husband what the hospice nurse said and he said she didn’t say much, just that they want her to start taking the morphine to help eliminate her suffering and he said she couldn’t articulate to him why they wanted to lower the oxygen down to 12 liters. My BIL seems to think that MIL has it in her head that the morphine is going to make her go to sleep and die because when they got the grim prognosis from the lung dr in February, my SIL asked him what the end will be like and he said she would be medicated, she would go to sleep and not wake up again.

I have to be honest, when MILs partner called, he was crying a bit and he said she wasn’t doing well and he made it sound like hospice wanted to euthanize her! Now I know they don’t do that but I couldn’t figure out why we would sedate her with morphine and turn the oxygen down/off unless the plan was to speed up her death. It made little sense because she’s still with us, she’s alert when awake. He made it sound like it would be what they did with MILs mother when her IPF battle was over, they gave her morphine and turned off the oxygen. She was far worse than MIL was though. But that’s not actually what hospice is suggesting. They just want to eliviate the suffering. I’ve experessed my concern about the suffering on this forum for a while now, she has been suffering and I am so glad it’s finally being addressed. (Long story short, MILs partner was refusing the morphine and anxiety meds up until a few weeks ago, was even telling family that he threw them away! She was suffering at night, anxiety and shortness of breath and all he did was sit and hold her hand) And there is no reason to keep the oxygen at 16, I don’t know why the nurse couldn’t explain that to my husband. She’ll now be given morphine 3 times a day but I don’t think the oxygen will be lowered yet, my husband thinks she needs it that high since her lungs are so bad. So that’s where we are tonight.
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Reply to worriedinCali
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Worried, I'm so sorry the family is going through this.

The NIH publishes a detailed overview on the current guidelines at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2707160/

It is very long and pretty technical; but even if you just skim through it I hope it will reassure you all, especially MIL's partner, that the medical establishment is doing its best to find the right way forward. Treating end-stage COPD - there's just nothing simple about it. No clear right answers. All everyone is trying to achieve is the avoidance of needless fear and suffering.

That said, if your MIL's partner and even more so if MIL herself feels they're being rushed or hustled, they have every right to say no. I wasn't impressed, for example, to read the recommendation to withdraw feeding; not unless MIL has stopped wanting to eat, that is.

The morphine option is also difficult; but it truly isn't as simple as keeping her quiet while she dies. Morphine is effective in improving the quality of respiration; so as well as making the patient feel less stressed/distressed, it increases the overall uptake of oxygen.

I was very lucky on this point. My mother was px'd oral morphine, and she was able to indicate whether or not she wanted to take it. She chose to only on a couple of occasions in the very last days of her life, and not in fact at the end. I was never put in the position of having to decide for her - as I say, very lucky.

So, if it's possible, in the first instance - ask MIL. If she can't answer, then it should be possible for the partner to request a trial and, if he isn't confident that it is helping, then to stop.

It is incredibly important for his peace of mind as well as that of the rest of the family that they don't feel they're being pushed, and that they do feel free to be guided by what MIL is showing them. If she can lead the decision, great. If not, they should feel free to try the initial dose of morphine. It is NOT the same thing as knocking her on the head.
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