End of life protocols
January 7, 2022 10:18 AM   Subscribe

Content warnings: death, dying, corporeal stuff, general grossness, and family emotional agonies. If you're not up for it, do yourself a favor and pass this one by.

This was my question from a few weeks ago.

He got covid. It's been unimaginable hell. I've asked other people if this is normal for death and it is absolutely not. He's alternately half-comatose, coughing like you simply would not believe (I wish I could describe this better but it exceeds my ability to describe it), sleeping, or weeping as we try to handle hygiene from what we think is a combination of humiliation and pain.

He can't speak. He moans, cries, coughs. He is fully incontinent, cannot eat or drink, and yet is somehow having diarrhea every three hours. Despite very good care, he has bedsores. Crusts form over his eyes every couple of hours, and we wash them away with a warm washcloth.He cannot fully close his mouth and what phlegm does come up sits there until we clean it, clean the cannula if applicable, and apply Burts Bees. We moisten his tongue with a sponge.

This is a nonstop and he is in agony.

He is in a hospital bed at home with a nasal cannula oxygen thing we are not currently giving him (we sub treatments in and out based on what we think he needs.)

It is very, very hard to move him to keep him clean, even with health care professionals in the family who are here and helping out.

We have hospice care and get assorted advice from the rotating nurses ('He can't die until his blood pressure lowers. The steroid raises it artificially. Don't give it to him.') and then the next day some other person comes in and scolds us for not giving him the steroid. No one will raise the morphine (I think it's currently .5 to .75 every two hours as needed.)

I'm not going to go into all of the drugs he's taking - the main and most important ones are Lorazepam and Morphine. Others 'support his breathing' or 'lessen the dementia' (they refuse to believe his agonies are pain and not dementia. I'm sending them a video later.) Also, why would we want to support his breathing if he was not in distress? We're here to help him die a decent death and it. is. impossible.

This is a hypothetical ask. We know that that stopping drugs would be an ugly death. But he has been in hell for more days than I can even count. We know he wants to die. We know it. We were just told it could be anywhere from today to another week.

Understand please, this is not a plan...this is a question for those who have been through something like this: what was it like? A health care worker brought it up, and someone in my family asked me to follow up. Another family member has power of attorney and presumably can refuse any medical treatment they choose on his behalf.

If you feel any need to scold about this question...I would appreciate your restraining yourself.
posted by A Terrible Llama to Health & Fitness (38 answers total) 7 users marked this as a favorite
Best answer: Although the application of the Liverpool Care Pathway was sometimes carried out badly, when it was done well it successfully provided a good death for people in the situation you describe. I offer this version of it in case any of it is of use .
posted by plonkee at 10:52 AM on January 7, 2022 [6 favorites]

Best answer: In the home death I experienced, when it came down to the final days we absolutely made our own decision about what to give the patient and when. I no longer remember dosage information but if that morphine dose is low, reach out ASAP to the hospice hierarchy and insist that they increase it. (We were extremely grateful that the hospice we used was very helpful in this regard.)

I'm so sorry that you're going through this. I deeply remember the moment in our home death when I begged the universe to let this person die already. Sending you a virtual hug.
posted by BlahLaLa at 11:01 AM on January 7, 2022 [28 favorites]

Best answer: I'm so sorry for what you and your family are going through. I'm going to be blunt. Some people just die awful awful deaths and it isn't at all controllable or knowable. That's one of the reasons why the nurses can have completely different advice, because different people respond differently to meds or without them. One of the reasons Hospice gives family choices because it is impossible to predict what choices are meaningful to loved ones, even if the results of those choices may look (and often times do) look exactly the same or very similar. There are no wrong choices.

This is just a utter,awful slog , and then it continues to be
awful and then it's over.

Personally, I think what's most important is that you and your family have support you need, that the hospice team is listening and responding to you and your family. That the decision makers make the best decision that they can and are as comfortable with it as they can be.

You will get through. He will pass and this suffering will end. Take gentle care of yourself during this time.
posted by AlexiaSky at 11:03 AM on January 7, 2022 [4 favorites]

You have my deepest sympathies during this insanely difficult time for you.

Two of my family members worked (in non-clinical jobs) for a number of years at a well regarded hospice in our area, which had an end of life unit demarcated in a local hospital for the last few days of life (previously the patient would be in a nursing home or at their residence). It appears that is not the situation in your case. They also had chaplains and social workers to assist the family. Of course even that may have been "in the before times", I don't know what is common today.

The closest I can come to an "answer" is that if it were not for all the super-human efforts being brought to bear for your loved one he would be in far more pain and distress, or might already have passed. The problem is non-clinical folks can't say, and I gather some of the clinical folks disagree.

In my mother's case (brain aneurysm in her sleep) I, as Healthcare POA, decided that brain surgery on an 83 year old woman would be beyond what she explicitly stated in the signed document. And, indeed, she passed in the hospital while I was out getting something to eat. My extreme sympathy and sorrow for you and all those involved is based on how completely opposite your situation is from how mine was.
posted by forthright at 11:14 AM on January 7, 2022 [3 favorites]

Best answer: I'm sorry for what you're going through. We went through hospice for my mom and just upping the dosage of morphine did a lot. I'm not sure why the hospice doesn't believe you that it's not pain, (perhaps it's a form of CYA?) but if you insist, maybe it will get them to see reason. We were told that she might last a week or two after we upped the morphine but it was only about 3 days. If we had tried the other methods, it would have only prolonged her suffering.

Get them to raise the morphine. It sounds like there is no quality of life, and this will ease his suffering, which is what it's for.
posted by thewumpusisdead at 11:18 AM on January 7, 2022 [29 favorites]

Best answer: Nthing that the family needs to insist they up the morphine, asap. I don't know why they are not already willing to do this! If he is not eating or drinking (particularly drinking), he will not last long, so why not relieve the pain during the time he has left. Shame on hospice if they don't help with this asap.
posted by gudrun at 11:33 AM on January 7, 2022 [5 favorites]

Best answer: I am so sorry you're going through this. Just adding to what others have said about hounding hospice for more morphine. As much as possible. What is the worst possible outcome of that? Death by overdose? If you've developed any kind of personal relationship with any of the hospice providers maybe talk to them directly and privately.

And if you can, pick up the morphine directly from a hospital/pharmacy. It is not unheard of for strong drugs to get "diverted" by staff along the way. Feel free to message me if you want to chat -- I went through a similar thing with my mother a few years ago.
posted by nixxon at 12:08 PM on January 7, 2022 [1 favorite]

Firstly, I'm so sorry for you and your family's suffering.

To me, it sounds like no one is really supporting you effectively in terms of the death process.

This is an out-of-left field suggestion, but it may help to contact a death companion or death doula in your area. My colleague is a death companion – a consultant who advocates for families, for the dying person, helps with red-tape, helps consolidate communication, acts as a hub of information. Like a midwife or doula, but for death. This is the resource they suggested as a starting point: https://inelda.org/find-a-doula/

The medical industry doesn't always approach death with the frank, direct acceptance you may need (for example, is it possible any of the nurses are attempting, even unconsciously, to prolong this person's life?) Having a separate, unbiased, not-emotionally-exhausted person who will advocate for you may help.

Whatever path happens, sending you and your family as much peace as is possible during this traumatic time.
posted by Uncle Glendinning at 12:09 PM on January 7, 2022 [5 favorites]

Best answer: It was bad and then it was over. It was the best we could have done. The morphine helped.
posted by teremala at 12:12 PM on January 7, 2022 [5 favorites]

If they really won't budge on the morphine dose, at least claim to go through it at the maximum rate so you can keep getting more.
posted by teremala at 12:15 PM on January 7, 2022 [1 favorite]

Response by poster: what's most important is that you and your family have support you need, that the hospice team is listening and responding to you and your family. That the decision makers make the best decision that they can and are as comfortable with it as they can be.

I wish I could say that hospice was supportive. They are kind. They didn't take the job because they are cruel people. But they give conflicting advice and they resist resist resist adding morphine. He's been on .5 to .75 ml morphine for several days.

We had a showdown with them earlier today and I got the doctor's email address so that, unbelievably, so I can illustrate to her what we are describing is pain and suffering and not delirium. So I'm going to film my father's most painful moments on a freaking iPhone.

This is the second time I've had to resort to recording sound files to prove conditions to them what they can't witness them on the ground in the thirty minutes they are here, because extremes come and go. Now, video, to get them to do what they are specifically and clearly being asked to do: up the fucking dosage.

Trust me it's not a lack of assertiveness. There's also some kind of pissing contest among hospice works that none of us give a shit about.

This is the third time we've been told he's going today and then at the end of the meeting the woman was like, 'maybe a week'. My mother will throw her own head at them by then.
posted by A Terrible Llama at 12:18 PM on January 7, 2022 [10 favorites]

Best answer: I'm so sorry you aren't getting the support I would expect you to get from a hospice organization. The hospice we worked with when my dad was dying 100% upped his morphine so that he was essentially sleeping 24/7; they knew he was at the end and just keeping him comfortable seemed to let his body complete the dying process. Once his morphine increased, he never really regained consciousness but they told us that going in. It was their recommendation. And yeah, our experience was very similar to thewumpusisdead: once the morphine increased, he lived maybe 2 1/2 days after. But before that he was clearly in pain and uncomfortable.

Just read your update: my dad was in the hospice facility when he died. Maybe they're resisting because your dad is at home (NOT SAYING THAT'S OKAY)? I wonder if the fear of someone in the household using morphine is keeping them/some of them from increasing the dose? I know your family wants your dad to die at home. I really hope you're able to get the hospice to see reason.
posted by cooker girl at 12:21 PM on January 7, 2022 [3 favorites]

That's absolutely unacceptable. The hospice should have an MD medical director, take it straight to them. On the small chance you're in CT, memail me.
posted by cobaltnine at 12:45 PM on January 7, 2022 [3 favorites]

Response by poster: the hospice should have an MD medical director

I'm pretty sure this is the ding dong I have to email the video file to. I had to verbally manhandle her to get her email address for the video "so we could all be on the same page and have the same visibility and transparency into the reality of the experience."

There may be some pissing contest beneath the scenes of our family members who are RNs, and one who has been an RN nurse director at an elder care/nursing home for decades, and so we have expectations and pointed questions they're surprised by and usually they just drift in, drop meds and leave? But people really should be checking their egos at the door.

And everyone has an opinion. Take the steroids. No wait don't. Take the delirium meds. Don't. Why didn't you give him the delirium meds?

Like I said - they are not mean people. We are not mean to them. But the people on the ground are mostly disempowered from making major decisions, seem thrown off by being questioned (and they have to be questioned--if nothing else, they give different advice and reasoning.) If my dad has an episode at 3AM and we didn't get permission to increase the morphine we're screwed.

Thanks for listening to rant #4.
posted by A Terrible Llama at 1:09 PM on January 7, 2022 [11 favorites]

Best answer: I am a nurse but not a hospice nurse. End-of-life care for adults is outside my professional experience and I'm neither qualified nor licensed to offer advice about specific treatments or medication regimens.

My limited experience with end-of-life care involves neonates born with anomalies that are incompatible with life. In those cases, we provide comfort care, meaning we relieve pain or anything that looks like it might be pain; provide warmth, dim lighting, and quiet; and encourage skin-to-skin human touch. No vital bodily functions are supported; for example, if it looks as though the baby is having trouble breathing, we treat the symptoms arising from that trouble (agitation, etc.) but don't try to maintain the function of breathing artificially.

With the caveat that I know nothing about your father's medical history or the purpose for which his current medications are prescribed, it sounds like maybe he's receiving both comfort care (morphine, lorazepam, mouth swabs, hygiene) and treatment of disease (steroids, dementia medications) and those two different kinds of care may be working at cross purposes.

When you do speak with the medical director, who is absolutely the correct person to involve, it might be helpful to frame the conversation by saying that you want comfort care and only comfort care provided to your father even if that hastens his death and that you would appreciate a layman's explanation of what role each medication plays in the provision of that comfort-only care. The more times you can say that you understand clearly that more morphine might mean he passes sooner, the better.

I'm so sorry for the experience you're having right now, and I'm wishing your dad a peaceful end of life.
posted by jesourie at 1:32 PM on January 7, 2022 [27 favorites]

More morphine should help with diarrhea too so definitely pursue that. I’m so sorry you’re having this experience.
posted by nouvelle-personne at 1:52 PM on January 7, 2022 [4 favorites]

Best answer: Like I said - they are not mean people. We are not mean to them.

Be mean. My mother was an ICU nurse, we've all been around hospice for grandparents. She was around when I was in the ICU and was a plain old bitch when it came down to things like this.

Get your supervisor on the phone right now, Call the attending right now, Demand no holds barred to meet your demands. Be mean and brutal. Wake people up. Fuck them.

Be strong. Hope it ends soon.
posted by zengargoyle at 2:15 PM on January 7, 2022 [14 favorites]

Sent you a mefi mail
posted by cda at 2:17 PM on January 7, 2022 [1 favorite]

Best answer: Strongly second zengargoyle. Being uncomfortably assertive, even aggressive, may be necessary.

When my father was in hospice, I had to threaten to withdraw him unless he got *less* morphine. The dose they had him on made him insensate. When they finally put him on the on-demand pain pump I'd been begging for, he used far less and was able to visit with family and tie things up with his publisher, both of which he very much wanted to do.

I had repeatedly pestered them prior to this and gotten nowhere. After finally making that threat, they still dragged their feet and I had to tell the medical director, nope. This happens by tomorrow or we're out.

They didn't want to lose the revenue. As much as many of the individual workers are not "mean", often decisions are made based on money.

Also, people who work in extremely stressful situations do tend to become numb as a way of coping. Your medical director may not *want* to know how much pain your father's in.
posted by Flock of Cynthiabirds at 2:39 PM on January 7, 2022 [6 favorites]

This is what my mother's good death looked like. After she'd stopped eating for a day or two, all medications including BP meds and diuretics but not her fentanyl were stopped on a Tuesday. She was administered adequate morphine to deal with the additional discomfort caused by the the stopping of the drugs. By the following Sunday she was unconscious, and she died on the next Wednesday , as per her GP's expectations. It was very humane and what she herself wished for.
posted by Thella at 2:58 PM on January 7, 2022 [6 favorites]

I’m sorry this is happening. I have no idea if this comment will be at all helpful or germane or if it’s a possibility but gosh, my Dad spent his last few days on Propofol and I think it made things really easy on him.
posted by ftm at 3:11 PM on January 7, 2022 [3 favorites]

Best answer: Is there another hospice provider you can change to? While that may seem daunting, what you are describing is 100% the opposite of what we experienced with my mom. They brought us a whole bag full of comfort drugs to keep in the fridge well before they were needed, including morphine and haldol, and never questioned our request to increase the dosage near the end. We also stopped all meds that weren't comfort related, and once she stopped wanting food or liquids only swabbed her mouth. She died within a couple days.

We also had the moaning "is it pain or dementia" thing going on, once to the point that we had the nurse come in the middle of the night to help us, because we just couldn't figure it out. Of course when the nurse got there she completely perked up and even made a joke. The minute he left, she went back to moaning. It was.... very strange. But we let the nurse listen over the phone, and he added haldol I think at that point. They were literally willing to do almost anything to make things easy. And we didn't skimp on dosage or giving things when they seemed like they were needed instead of when the clock said.

I am so so sorry. This is the worst. I hope he can let go soon, and that if he doesn't, that you can find a supportive hospice. I am tearing up thinking about this situation, not because someone will die, we will all die, but because there are living people who could be helpful but aren't. That's just the worst.
posted by dpx.mfx at 3:25 PM on January 7, 2022 [7 favorites]

Medical director, stat. Introduce yourself as Dr. So-and-So if you have to. I’m so sorry.
posted by 8603 at 3:28 PM on January 7, 2022 [1 favorite]

Response by poster: it sounds like maybe he's receiving both comfort care (morphine, lorazepam, mouth swabs, hygiene) and treatment of disease (steroids, dementia medications) and those two different kinds of care may be working at cross purposes.

This is at 100% at least half of it, and we've pressed them on the difference between comfort care and treatment. We don't want him treated. We want comfort care only. We repeat this over and over. We are very very very clear. We ask that every single thing be written in the file so there are no misunderstandings.

And yet.

Medical director, stat. Introduce yourself as Dr. So-and-So if you have to. I’m so sorry.

I like this and don't mind doing it and can generate the cold voice where needed. I have done it, will do it again. We have a couple of actual doctors who could pull this cold voice on our behalf as well.

I feel terrible for people who don't have the emotional, physical, financial, professional, familial, resources that we do. I do not know how people do this. We are the lucky ones. And that is deeply fucked up.

We are considering withdrawing everything but morphine and lorazepam, or maybe all.

One thing I'm wondering is whether it is okay for us to just say, okay, no more. And stop giving him anything.

You'd be delighted to hear how many different reactions there are to this!
1)He'll be too stressed to die
2) his death will be a hideous gory mess
3) all comfort will be removed and all of your efforts to give him a dignified death will be for naught.
posted by A Terrible Llama at 5:48 PM on January 7, 2022 [8 favorites]

Best answer: Eff their many opinions.

I say you vent your frustrations and anger on the Medical Director and every other manager-level hospice person in your path. You know your dad. Everyone who knows him is in agreement. Hospice can get on board or at the very least get out of your way.

Hospice had prescribed my mom a small amount of morphine for comfort in the last week of her life. She was already in a nursing home, so they coordinated with the nursing staff. During her final hours, I made sure we kept to the schedule of a small dose every hour. I held fast even after I was interrogated by one of my mom's nurses because he didn't think she needed it as she "wasn't showing distress" despite her rapid breathing. Then he declared that he wouldn't give her the dose because "one day I will need to stand in front of God and say I haven't murdered anyone". He would however, bring it to me and watch me administer it. (?!?!?!)

At that point I couldn't care less if he legit thought I was murdering her, I was going to make damn sure she wasn't in distress and was comfortable. I told him to bring me the morphine.

All this to say: Showing distress is not comfortable. Your dad is in distress. Hospice is failing to provide comfort care. Go after them.

This is such a terrible situation. I'm so so sorry.
posted by jenquat at 9:00 PM on January 7, 2022 [8 favorites]

Best answer: I'm so fucking sorry that you're going through all of this. A big problem right now is that everybody is short-handed and you may be dealing with subs or newly placed hospice nurses. Your best bet is to take names and titles and keep a list of who you are speaking with and when.

Be difficult and tell whoever is there that you want the direct contact info for your father's hospice case manager. That person will be able to directly communicate with the doctor. Tell the CM that you are NOT SATISFIED with the care your dad is receiving, he is uncomfortable and suffering and this is incompatible with the compassionate end-of-life care you expect for him. Further, you expect that his comfort care meds will be calibrated accordingly. You can call them in the middle of the night -- it doesn't matter what time. If he has bedsores that are not being tended to and Medicare is paying his way, they can get dinged and not paid. It's a legit big deal.

Christ, I can't apologize enough for you having to deal with this on top of everything else. Rattle cages and make noise. If your dad's CM isn't responsive, call the main office for whatever agency you're dealing with and ask to speak with the regional manager. The beauty of hospice is that they all have phones 24/7. Source: my best friend is a hospice CM. She would be horrified if one of her cases was going like this.

I wish I could help you from here to take some stress off your shoulders. Please LMK if I can do anything for you - you know where to find me. Big, big hugs.
posted by dancinglamb at 1:57 AM on January 8, 2022 [7 favorites]

Best answer: My dad was in a nursing home with hospice care from an outside organization and we had a single hospice nurse and he was terrible. Thanks to encouragement from people here on the green, I called the hospice place to explain that my dad was suffering, and we weren’t getting enough support, and a new nurse got sent out that very day and she was shocked that he was not getting enough morphine and not getting it regularly and my dad died within three days. And I feel so guilty but I honestly thought I was supposed to do what the hospice nurse told me even though it was obvious to me that that nurse was ignoring/minimizing my dad’s discomfort.

I am haunted by that failure, and I will never get a do over. I am sorry you are in a similar situation. You’ve gotten a lot of good advice already. I just want to confirm that sometimes you have to demand a different approach. That sucks, but sometimes that is the reality. I feel for you.
posted by Bella Donna at 6:50 AM on January 8, 2022 [4 favorites]

I am so sorry you are experiencing this.

If it were me I would call and state clearly you need to speak to both the medical director and the MD. I would make clear you expect to do this within an hour. If these two don't take the reins and establish a clear plan that all the nurses stick to, and that addresses the misery you are all going through, I would start calling other hospice agencies to ask who is free to start today.

I would expect a steadily increasing morphine regimen and not much else. Are you comfortable giving the morphine yourself and gradually increasing the dose?
posted by latkes at 7:27 AM on January 8, 2022 [3 favorites]

Best answer: To your specific question, it is absolutely ok to withdraw all meds, food and water now. I did the same for my mother on hospice last year. She did not die quickly and it was very hard to watch but it's what made sense. And it's clear all treatments and even water were only prolonging her pain.

My guess is it's worth keeping the morphine going in increasing doses in the case of your father.

So a script for hospice is "We have decided to stop all medications except morphine. Please discontinue and stop mentioning these medicines." And "His pain is not being managed adequately. How much can we increase the morphine frequency and dose today?"
posted by latkes at 7:34 AM on January 8, 2022 [7 favorites]

Often physician-to-physician communication can be more forceful and get things done more effectively (shouldn't be the case but is). Are there other physicians who were perhaps involved in your dad's care prior to hospice, like a PCP or neurologist, who could advocate to the hospice on your dad's behalf? I am a PCP and this is a page I would not be mad about receiving on the weekend (on the contrary, I would want to be involved).
posted by telegraph at 7:48 AM on January 8, 2022 [5 favorites]

Response by poster: Thanks so much for all of your advice, thoughts, and support.

He passed away this morning, peacefully,

After the excitement has died down, at any time, anyone who comes across this is welcome to ask me anything.
posted by A Terrible Llama at 1:43 PM on January 8, 2022 [21 favorites]

I am so sorry for your loss. I know you did everything you could for him.
posted by Bella Donna at 1:45 PM on January 8, 2022 [4 favorites]

You did great. All of this sucks. I'm sorry you had to suffer.
posted by obol at 1:58 PM on January 8, 2022 [3 favorites]

Best answer: I'm sorry for your loss, and in awe that you worked so hard and suffered so much so that he could indeed go peacefully. Your labor -- emotional, physical, literal and metaphorical -- was all that stood between him and an impersonal, institutionalized death. May his memory be a blessing.
posted by BlahLaLa at 3:52 PM on January 8, 2022 [3 favorites]

I'm so sorry for your loss and I'm sure you're so relieved that he was able to pass peacefully. All the best to you and your family.
posted by cooker girl at 4:35 PM on January 8, 2022 [2 favorites]

Best answer: Oh, my heart breaks. I read this last night sitting at the bedside of my father, who is also dying. I had no words of advice though. What an awful situation you were in. I am glad that it was peaceful in the end.
posted by SLC Mom at 4:47 PM on January 8, 2022 [5 favorites]

Oh, thanks for updating us. I'm so sorry. I've been thinking and worrying about you and him. I'm glad his suffering is over and that at the end there was some ease. Wishing you/the family rest and peace.
posted by gudrun at 6:46 PM on January 8, 2022 [2 favorites]

Response by poster: I am haunted by that failure, and I will never get a do over.

I know I'm going to wish I did a lot of things different or better or faster or slower or whatever (someone mentioned that in an answer in my previous Ask). I won't get a do over in the sense that I don't think I'll see another such wretched death again. My family members who have previously been present at deaths have assured me that it is not usually quite as agonizing..

I'm going to look at it like this: every person who shared their stories in these threads may help some stranger we never know about, and those people will take some of this generously-given advice and they will be my do-over, even if it's only one person or one facet or one decision they make.

So try not to be haunted and I will try too.
posted by A Terrible Llama at 7:24 AM on January 9, 2022 [25 favorites]

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