End of life discussion-is it necessary?

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.

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.

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.

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.

Thank you all. I don’t know if it’s denial or just not wanting to deal with the reality of the situation. When I first asked my husband about it yesterday he tried changing the subject before I even got the complete sentence out! The reason I mentioned him POA is because with her illness-pulmonary fibrosis-no one can tell us how it will end and if decisions have to be made, my husband is the POA so I thought he should know what she wants. We don’t know if she will be alert and of sound mind until the very end or if she will become comatose and unresponsive, we don’t know if she will pass before she needs 20 liters and that is part of the reason why it’s my opinion that this conversation needs to happen. At times I don’t know if I’m being unreasonable and controlling—my mother has COPD & is on oxygen and I have had years to come to terms with it and she has told me exactly what she wants so when the time comes I know what has to done and I am ok with it—whereas MIL was diagnosed only 16 months ago and has declined extremely fast since February and we are all still coming to terms with it. I’m a take charge kind of person and I don’t want to overstep my bounds, I’ve already had to bring to light things her partner has said and done, his views on hospice and morphine and getting rid of her stuff even though she’s asked him not to until after she’s gone. she does have & use regularly a pulse oximeter. She usually stays around 94-95 but it’s been dropping into the 60s& 70s and if it doesn’t come back up within a few minutes she takes some Ativan. When she went on hospice, we weren’t involved, they came to MILs house and there was no family involvement. I wish we had all been there. My husband has no idea who the hospice people are and who is supposed to be called when they don’t show up. If MIL declines and isn’t able to make decisions for herself, the 3 kids will be left to decide amongst themselves and it could get ugly, I don’t know if all 3 are willing to give her a peaceful passing or if the other 2 would be in favor of calling an ambulance and having her hospitalized for the rest of her days, with a tube down her throat unable to talk. We know MILs partner is not in favor of a peaceful passing so that could be an issue. Seems to me it would be best for all involved if we knew what SHE wants because there would be no fight over what to do. MAinCT yes I see that point you were making, thank you for that information, I wasn’t sure if nursing homes could provide higher oxygen levels or breathing tubes. MILs own mother passed from the same thing and she was in a nursing home, I have no idea what her oxygen needs were though, but they weren’t as high as MILs. I think having a family meeting with hospice is a great idea, if my husband can’t bring himself to have this kind of talk with his mom, maybe a group discussion with hospice with be easier. This whole thing is like a roller coast ride, up and down, up and down.

Hospice did not come today and they did not call. Am I right to think that this is unacceptable? They are supposed to come MWF to clean MIL. Supposedly MILs partner called today and a nurse is supposed to call tomorrow. So it’s been 3 days since MIL was cleaned! If they don’t come tomorrow, it will be 4 days. The only person MIL is comfortable with, isn’t physically able to clean her. I am assuming the holiday has something to do with their absence! I wish someone would have called to let us know that no one was coming, we could have tried to figure something out I’m sure.

Also I had thought, after reading the POA, that it was clear that MIL wanted comfort care and would be medicated at the end. We wouldn’t prolong life. But if she’s at 16 liters oxygen now and nobody has actually asked her what she wants.....I guess I am confused now. And if she’s still alert and of sound mind, like one of you pointed out, she might change her mind and want us to take life-saving measures if it gets to that point.

Worried, in your shoes, I would err on the side of calling the hospice org ( if you know who they are) . I know you have no standing, but perhaps you could speak to their chaplain or social worker and explain your concerns.

Is your husband always this timid? Is he afraid of the partner?

Worried, I think I posted on your earlier thread that I would check my notes on the dangers of high liter flow rates. I've just done so, found the notation, but all I wrote from discussion with (I believe) the DON in March, 2018 was that they didn't want to raise the liter flow above 6 L. They didn't even want to put Dad on 11 liters, as he had been at one time in the hospital.

One of the concerns was an imbalance, similar to that experienced over a decade ago in a major breakdown. At that time, he was in respiratory failure, but wasn't keeping oxygen in his body long enough before it was exhaled, so the treating doctors (probably his pulmonologist) felt it appropriate to reverse the liter flow.

This was accomplished through a medically induced coma, and "switching" control of oxygen in his body to reverse the inhale/exhale ratio, so that oxygen was retained in his system longer.

I was also told this March that Dad's body was shutting down; although it wasn't stated, I believe that was a concern of increasing the liter flow as well, i.e., since it would be reversing a natural process.

It's hard now to even conceive of someone on 16 liters of flow.

MAC offers good insight into the "value" of increased liter flow. At the rehab facility, there was also no wall infused oxygen; they had only the stationary concentrators, which would have had to be connected to produce greater than 6 liter flows.

Although it wasn't in my notes, I vaguely recall receiving advice on the same issue as MAC raised on the "value" and efficacy of higher liter flow rates.


Worried, Sue makes good points about POA authority, and distinguishes between a legal/financial vs. a medical authorization to make decisions. I don't recall w/o reading older posts whether or not the partner, who seems to be in control, was also designated as proxy under a Living Will or other medical decision making document.

Personally, I think that the partner's biased position on end of life is doing no good, and that as you suggest, the family should have a meeting. I think it's time to stand up to him. Your MiL really can't have much quality of life at this point, and since she still is cognizant, she has a right to make decisions w/o the domination of the partner.

And I would call hospice and "ream them out!" There's no excuse for not calling to cancel an appointment.

I think you're wise and your actions to address issues are very appropriate. Don't back down to the partner; I don't believe his decisions are in anyone's best interests.

Your MIL deserves some peace and a comfortable exit strategy, not one dominated by his own opinion independent of what's best for MIL.

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.

I think what she means by POA is the paperwork not the assigned person. My Moms POA read like a living will.

My question would be, has her hemoglobin been checked. This determines how much oxygen is carried from her lungs to her organs. If its really low, not sure if increasing the oxygen will help.

Hi all. Just read all the responses and just I was finishing up, MILs partner called me crying, the hospice nurse is recommending we turn down the oxygen and give MIL all the meds and let her go. He wanted my hubby to call the nurse and get it straight from the horses mouth and then call his siblings and tell them. So he is on the phone with the nurse now.

MILs partner doesn’t have POA. Hes 2nd when it comes to executor of the estate but for everything else, my husband is POA and if he can’t or won’t, it goes to his sister and then brother. My husband is the kind of person that doesn’t plan ahead, he always says we’ll deal with it when the time comes. Anyway I will update as soon as I know what’s happening.

Joann29 I don’t think her hemoglobin has been checked, as far as I know, the nurse just checks her blood pressure and other vital signs and asks about bowel movement and urine output. There is a trust, my husband is executor. There is a living will, my husband is first then MILs partner is. Then there is a health POA, I don’t know if counts as advanced directives or not, my husband is first then his sister then his brother.

Garden artist, thank you so much for that information. The hospice nurse told my husband that her oxygen should be lowered back down to 12. It was 12 for awhile and 2 weeks ago it was at 14 and now for about a week it’s been at 16 IIRC. I wasn’t able to be present for the phone call, had to take the kids and keep them out quiet and out of dads way since it was such a serious conversation. So far all I know is that hospice says she needs to start taking the morphine and they want to lower the oxygen back down to 12. This means to me that she would likely be in a sleep-like state because her oxygen levels were dropping into the 60s/70s at 12 liters and she visibly struggled to breath. The medication required to control her breathing would make her sleep I assume? My mom is a retired nurse and her oxygen is at 3 liters now and she can’t even believe MILs is so high! I have thought MILs body was shutting down for over a month now. We stopped by last night to bring her cake from my nephews birthday party. Kids and I stayed in the car because one was sleeping, my husband was just going to run in and drop it off but he ended up staying for 15 minutes, I didn’t think much of it at the time but now I realize, she must have been in bad shape!! I asked how she’s doing and he said “the same” but today when we were out with friends, he asked if there is some sort of stigma about morphine amongst people our parents age because last night he tried talking her into taking the morphine again and she still won’t. So that’s why I think she must have been struggling last night. We know her partner has scared her into not taking it! He think they want her to take it so she will die!

So anyway my husband did call his siblings & tell them what hospice said. Don’t know what their response was. I believe my SIL was headed straight there after they talked, but my BIL away busy (go figure. That’s another rant for another day!). Hubbg went over to MILs house about an hour ago to talk to her about the morphine and he said that if her partner won’t give it to her, we will probably have to take turns staying over there. My SIL told him that MILs partner is really stressed out and we need to support him. He told her doesn’t know what he’s (partner) been telling her, that we’ve offered to help multiple times and he doesn’t take us up on it. I told him 2 weeks ago that his emotional well being is important and that if he can’t handle It anymore, he needs to tell one of the kids because she is their mother and they need to step up and help. Don’t be afraid to ask for help. But he wasn’t having any of it. We probably wouldn’t be in this situation if there was better communication in this family! MILs partner should have never been in charge, we should have all met with hospice on day 1 and had a plan. At least that’s how I would have done it if it was up to me. Nobody communicates with hospice, we get information from MILs partner and he is clearly telling people different things. I ask him a lot of questions so I can try to get an idea what is going on and where she is at in the dying process. And it’s been up and down, some days he says she ate a good meal and talked all morning, some days he said she had a rough night and couldn’t breathe. Some days he says the nurse says she declining but he doesn’t give a straight answer as to why, he always says “her breathing”. My husband said they probably won’t lower the oxygen but they will start the morphine. I’m hoping he’ll give me more information when he gets home.

Thank you MAinCT. So essentially if we were ignore hospices recommendation and we left the oxygen at 16 and administered Ativan (its actually lorezaphan) she is suffering?
I know PF and COPD are not the same.
This is definitely no way to live, she has been bed-bound since Easter Sunday. Has lost control of her bladder so she lays on a pad all day. She can’t have a bowel movement unless someone inserts a suppository. She uses the mask instead of the nasal canula now because her breathing is so bad. She’s only been taking the lorezapham when her oxygen levels drop and don’t come back up on their own. To me that is a suffering life.

Fortunately we don’t have to wait hours for family to arrive, all 3 children and MILs siblings are all local. If they aren’t willing to arrive in a timely manner, it’s on them.

Just looked at the trust papers and my husband has a durable power of attorney with MILs partner as backup, and a durable POA for healthcare with his sister as first alternate and brother as second alternate.

Does hospice stop sending a home health aid when the end is near? Could that be why no one showed up on Friday? I think the nurse came Thursday, I just can’t help but wonder if something was brought up then and MILs partner didn’t tell us. When they called yesterday, they were told the nurse would call today and she did. I got the impression that hospice has been recommending this path for a week or two. They suggested he stop feeding her 2 weeks ago or so, and it didn’t go over well at all.

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).

My understanding from my FIL is that morphine will help dry up the secretions that give the gurgling sound when they breathe. The sleepiness is a happy effect of the drug. I'd much rather feel dry and sleepy when passing than feel like I was drowning.

I'd suspect that hospice fears aspiration pneumonia was the reason they suggested stopping feeding. Pneumonia is ok too - there's a fever you treat with Tylenol while the bacteria grows in the body, particularly fast this close to death. Again, you get sleepy from the fever. Not a bad way to go at all.

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.

The oxygen stuff is complicated, Worried; it has to do with keeping blood gases in balance and other complicated stuff. It's not as simple as "higher oxygen is better".

To your MIL’s LO, hospice IS wanting to euthanize her. He doesn’t want the morphine because it does mean she will die. I’m not sure I disagree with him, you have to understand his feelings and viewpoint.

When the ‘morphine drip’ arrives death is on it’s heels. I’ve seen many families get to this point and back away and I understand completely. Hospice is NOT a purely natural death. I worked in oncology in the 1980s and 1990s before hospice became a branch of the medical establishment. (Yes, we did the hospice care in the hospital and it just had no name at that time.) I felt at the time it was ‘kinder’ to get it over with (and if there are organs shutting down and inability to absorb oxygen that IS death looming), but as I get older I’m unsure that the medical establishment has the right to interfere AND what exactly is their underlying motivation?

Comfort measures should be the aim. But the medical establishment in 2018 is not the one from 1985. The population has exploded and resources are at a premium....

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.

Thank you Countrymouse. Hospice is definitely not rushing anything, they are making suggestions that IMO are reasonable and in line with comfort care. I don't know why they wanted her partner to stop feeding her, as I've said many times to him hospice is here to speed up the process. I can only speculate based on what I've observed but it appears to me that she's no longer able to properly digest food and she cannot be without oxygen long enough to take a bite. One bite makes her levels drop down into the 60s or 70s. Whether or not that justifies the suggestion to stop feeding her, I don't know. I do know that on Thursday night she did not touch her dinner. Can't say I blame her, it was sitting on the kitchen table when we got there and was probably left over from lunch (or it was her uneaten lunch). Her partner gave it to her about 20 minutes after we got there, didn't warm it up either and about 10-15 minutes later, MIL asked me to heat it up which I did and it was never touched, when we left it had been discarded on the bedside table, still covered in the paper towels it was wrapped in when I first saw it in the kitchen. I do agree with what someone else said earlier-that when she is ready to stop eating, she will stop accepting food completely, she won't accept it to keep us hapy. So we will continue to offer food. I struggle with that on the opposite end as her partner--I don't worry about her dying because we didn't feed her, I worry about causing discomfort or that heaven forbid, she choke! (that already happened about a month ago and it scared the beejezus out of me!). It sounds to me like hospice is fully aware of her levels dropping and that the only medication being administered is lorezepham (I kept saying ativan thinking they were the same but now i am told they are not and its lorezepham she is on) and only when her levels drop and its happening more frequently. The morphine is to be administered 3 times a day and its, from my understanding, to keep her breathing controlled so that it doesn't just drop and she suffers unnecessarily. MIL is ok with this, my husband talked to her and its only being administered because she agreed to it. There is no morphine drip at this time, just oral drops 3 times a day. As far as I know, they aren't bringing in a drip.