Hold on Tight...

Lenore, yes, you can get a rx and "titrate away." Not so simple with some hospices, but you don't have to have hospice 1) at all or 2) around all the time. They work for you, if at all.

For some here, hospice has been a great help with a self-determined death. For others, it's been a hindrance.

Note also that a PCP or neuro not affiliated with your clinic can write morphine.

If you choose hospice, that is why I advise interviewing them as to their philosophy of things. Since you worked in hospice, I'm sure you know as well as anyone about "don't ask, don't tell" when it comes to the end of life.

For the record, it is not required that hospice be around for any variant of VSED, either. I think that is a myth propagated by the 60-to-0 notion (in terms of nutritional status) which is not generally going to be the variant used by PALS.

This is where communication in advance if not in real-time between the PALS & CALS is so important. There is a point where you measure food, drink, morphine and another point where you don't.

Of course, all this assumes the PALS has a duly-completed advance directive.

Lenore, I am just going to send more hugs as I don’t have any experience with this, nor can I get hospice unless it’s for a death wean from the vent. However, given my Brian’s current state of mind, he won’t be asking for a death wean, so that leave hospice out for me.

Hugs,

Sue

Hello. I was wondering what do you mean by “don’t ask don’t tell”?
Thanks for this discussion and the caring way it is lead.
Special good vibes to Lenore

My points were that hospice or not, you will
Need some medical involvement with Morphine and some prescribers are going to do some pretty close dose watching. To maintain comfort, you are also going to need some medical involvement with VSED. It is most likely to be available from hospice.

Don’t ask don’t tell us essentially the prescriber not getting overly involved in how Morphine is used with a terminally ill person. In cancer for example that is often the only thing between the patient and unbearable pain. If the amount used to treat pain happens to be lethal, so be it.

Thank you very much. I see the point. Here in France this amounts to finding the “ right” doctor and as in the us be with an understanding medical team.
I hope the two of you are with good people

I’d also like to respectfully add that those who “disagree” with self determination in end of life refrain from commenting please. I know the arguments and the outrage, but this is Brian’s end and no one else’s. Thank you.

This now takes the first place award for Best Thread in the world. Very real. Very kind.

My own little bit for your consideration: My PALS (an MD) opted for nothing. No tubes, no feeding, not even a drip for hydration. She allowed only a catheter, to make it easier to clean up after her. Her orders were consistent, "When I have air hunger, give me morphine, not oxygen." She did not want to live locked in.

Death by Dehydration gets mixed reviews. (Starvation doesn't count, really, because it takes 3-4 weeks to starve out.) A survey of hospice nurses in Oregon rated it 8 out of 10 for the gentlest way to go. But a doctor who helped his dad go through it for a week said his dad seemed quite agitated the whole time.

The info in this thread is soooo important and soooo right-on -point. Hospice works for YOU. If you get the sense they are not on your same page, then consider giving them the boot.

Big Idea One: Advanced Directives. But I note that a few PALS simply refuse to discuss the matter. IN THIS CASE, my advice is to draw up the papers completely, then have the PALS simply sign them when they're able.

Big Idea Two: ALS is destroying a life. DON'T let it destroy two. The survivor must prepare for surviving, including having the paperwork right and maximizing the insurance money, etc.

Big Idea Three: "Being of sound mind..." is the time to make decisions. If your PALS has totally lost all rational thought and the hospice team is not helpful, then the CALS might have to make some decisions that the others would disagree with.

I'll end with a Johnny Cash song:

You ask me if I'll get along / I guess I will, someway / I don't like it but I guess things happen that way
God gave me that girl to lean on / Then he put me on my own
Heaven help me be a man / And have the strength to stand alone / I don't like it but I guess things happen that way
You ask me if I'll miss her kisses / I guess I will, everyday / I don't like it but I guess things happen that way
You ask me if I'll find another / I don't know. I can't say / I don't like it but I guess things happen that way
God gave me that girl to lean on / Then he put me on my own
Heaven help me be a man / And have the strength to stand alone
I don't like it but I guess things happen that way

Laurie, I like your style and it looks to me that others do so as well. I don't see you running into trouble being frank and brave.

Talking about these matters with my PALS I too find this thread very important. He's at a point where he'd be okay to just not wake up. Which is something else altogether than being proactive about end-of-life decisions. Making decisions takes energy.

Laurie, if you would be so kind to delve into the importance of Bipap in making decisions I'd be very interested.
The backup rate if the machine is crucial to help him conserve energy, I think. Often during the night there are no spontaneous breaths for a long time. Do I understand correctly that going to sleep and not waking while wearing a mask is very unlikely until a very late stage?

I'm going to divide this into two posts on morphine at the end of life, one on BiPAP, and one on what happens with the CALS after that, since there's a lot to cover.

The medical involvement we had with morphine (remember, we did not have hospice) was a PCP contacted via computer who wrote it, who had seen Larry in the last year as is required, and had been writing codeine (that we used prn) for his cough, although that would not be a prerequisite.

I had the option of picking up the script or having it mailed. Then I had it filled and brought it home. Titration was totally up to us. And to clarify, that had nothing to do with our state's dignified death law, but was just a routine medical transaction.

I am aware that fewer docs write opoids these days because of hassles, but no laws or regulations of which I am aware prohibit the transactions I just described. The link in the preceding sentence allows you to click on each state's regulations.

I double-checked Minnesota's. The only caveat I see is that a doc will need to feel comfortable with characterizing air hunger, if the primary source of discomfort, as "intractable pain." If you have a doc who doesn't see that relationship, I would find another.

Again, I agree life is a little different in hospice, and processes/outcomes will vary. So I will repeat my suggestion that if you want/need hospice, understand up front what the prevailing wind will be, perhaps with a eye-to-eye question like, "Toward the end, [I/name] do<es> not want to suffer past what we consider to be the end of life; how does your agency handle that?" or whatever wording makes sense to you.

So my last point on VSED was that by the time someone is properly titrated in other respects, VSED is moot.

If no one is pushing food/liquid in the pre-death phase (why I noted there is a point when we stop pushing) and the PALS can see that the CALS/family is at peace, the PALS is already going to be naturally decreasing these, to the point that morphine and BiPAP titration layered on top, allow the death that reflects the P/CALS' preferences and values. I have seen a fair number of these "nature's way" deaths and they are not painful or prolonged.

I invite anyone uncomfortable discussing individual cases on the forums to PM me or leave me a visitor message and I will message you (you do not need to provide your email).

Best to all CALS on another manic Monday!
--Laurie

Laurie, I want to know if there would be any issues with titration of Morphine if not on hospice from any kind of legal standpoint. (Sorry to semi-hijack your thread, Lenore.)

For example, in Oregon we have “death with dignity” law. But my understanding of this is that if it is used when patient is not on hospice, the situation is treated as a coroner’s case (with potential prosecution of the surviving spouse). However, if the patient is on hospice at the time, everything is considered above board legally, (no coroner’s case, etc.).

I’m assuming the same might be true with morphine titration by a caregiver if not on hospice? I’m not sure about VSED. Thoughts?

Thanks everyone first for the reminder re staying in control of the hospice situation. Considering that hospice gave us morphine with 5 refills and no claim of intractable pain, I think we are in the right place so far.

Thanks for the beautiful words from Johnny Cash Mike. A soft spot in my heart for him for sure.

I will say, I did my hospice work in the 1990’s. At that point, we were still as a nation wresting with the notion of Brain Death. For Americans who may recall, the Nancy Cruzan case in which a brian dead woman’s family had to go through years of legal hells to get her tube feedings discontinued had not yet happened. No state had a right to die law.

So regardless of if legal realities were different in my state or not (they were not by much) I don’t feel that self determination in this matter had the popular legitimacy it does today. That’s good news because it might well help to explain the 5X refill. Those were once routinely dated for next available pick up time, at least around here.

Thanks Tillie for the notes on doseage- interesting.

I must say it’s been rough. I kind of hate that we are dealing with hospice now. I hate talking about Morphine. I hate that Medicare does not pay for Riluzole for people in hospice because it is a life prolonging treatment. It’s all closer to the end.

Oh, and ask away Wendy, good question! We pretty much intend to stay on hospice if at all possible. I mean, where the heck else will we get some of the goodies they have? Brian has warm stones therapy tonight! Paid, yes PAID by Medicare.

As promised, here is part 2 [BiPAP titration] as relates to the concept of morphine titration. What happens afterward is in the next post, so please read them both.

If someone is on BiPAP for all or most of the time, and has a backup rate set, death while wearing the mask in sleep is somewhat unlikely, though not impossible.

The reason for this is that less energy is expended in sleep, and the backup rate, combined with the "target volume" that is most often part of the settings, then provides, of course, a minimum level of air volume each minute.

So as long as the PALS has enough musculature to process the air that the machine provides, and settings are optimal, s/he will likely not experience fatal respiratory insufficiency in sleep. However, CO2 that the body can no longer get rid of as healthy people do, is probably building up over time, leading to headaches, loss of appetite, irritability, restlessness, etc.

So in addition to titrating morphine (discussed in my previous post), the CALS can peacefully withdraw BiPAP. First is the morphine, then the BiPAP, so the PALS is completely comfortable.

Of course, before either is undertaken, for someone who is already dying, final words should be exchanged so that all can be at peace. When you read about prolonged death, typically someone is "fighting." This is what can be done when the PALS has finished the fight. The value of self-directed death is that you know when needs to be said, has been. The best gift you can give someone is the death they hope for.

As morphine is increased (through a tube, by mouth, or injected), as one or more doses, the CALS can gradually reduce the target volume (Vt or Va), still with a backup rate, though the backup rate may never have been triggered up to this point in the disease. At some point, the person will fall and stay asleep.

Sometimes, CALS do not change the BiPAP settings, which could prolong life.

Either way, when breaths are very shallow and all are being triggered by the BiPAP, (as can be seen on the data screen or just by looking), that would signify that only the machine, via the backup rate, is sustaining life.

Then, once the mask is removed and the machine turned off, that gift is given.

Karen, good question, I answered in another thread, but not in this one.

I had Larry's advance directive in the bedroom. When I called 911 to report his death, we got paramedics (who pronounced and then wanted to see the directive; it was quite visually obvious that Larry had been dosed with morphine recently), followed by cops who had obviously chatted with the paramedics off camera, followed by the coroner's designate (who never came up to the apt. but was dealt with by the cops, also off camera).

NOTE: if we had been in a state or country less tolerant of self-directed death, I would have cleaned up a little more and simply stated [truthfully] that he died while sleeping. If you want this kind of death and are not sure how to do it, message me.

As soon as the lead paramedic glanced at the directive, he said he was sorry for our loss and that was that. That's why I say, keep it handy if you're not using hospice. It would have been stickier if I did not have it, guaranteed.

As for my interaction with the cops, it wasn't much -- a matter of form-filling. There was no judgment or interrogation. They did ask our son for his ID, which I found interesting, since no one asked for mine, but he was wearing his habitual black hoody...they were very nice and offered to stay with us until the hearse arrived, but there was no need, so I sent them on their way.

The coroner's designate off camera released the body and the cops then called the cremation facility, using the number I gave them, to tell them they could pick up the body. Meanwhile, I set in motion the brain and other donations that Larry gave for research; a pathologist was sent to the facility to do the harvesting prior to the cremation.

All this took < an hour.

So, yes, while the coroner's designate was called out because it was a home death sans hospice, I never saw him or her.

The doc who wrote the morphine, Larry's PCP, was on vacation, so her PA signed the death cert based on his chart, which of course had the morphine in it, and the correspondence about getting it, only a week before, when I had first thought death was near.

--Laurie

To clarify, the reg mentions "intractable pain," but that isn't part of the rx, just part of the documentation that would come up if the doc were ever audited.