Palliative Sedation
In this mini-sode, Devan and Tyler discuss palliative terminal sedation. What is it, who can get it, and what are the rules around it?
Transcript
0:46
All right, Devin we are going to do another mini episode about something that we're obsessed with this week.Hmm.Yeah, so what are you obsessed with this week?All right, so I have had this one in my back pocket so maybe not this week but I've been thinking about it for a few weeks because I was advising our staff on an issue, a little while back and it made me think gosh I really need to like write this stuff down.
1:13
I was surprised that I couldn't find.In the literature on this topic, I actually find that a lot in clinical ethics.Like there's a kind of Gap in what I think, most people would agree on as good practice and actually it that good practice being documented and published in the literature.
1:31
So yeah, I agree.Yeah, it happens so often.Especially we in clinical ethics.We kind of get maybe like rules of thumb or like best practices that everyone kind of agrees upon, but they're not published anywhere.Where?
1:46
Yeah, so Shape Up clinical offices.Start publishing this work because it's important I say to myself as I have this document in front of me that has a bunch of rules that I think are important but I've never seen written down.Okay, huh.So the topic that was brought up, was palliative, sedation.
2:04
So, have you ever heard of palliative, sedation?I have but palliative means symptom management, right?Right.And sedation means going to sleep, right?Good, so we can deduce from that.So you're so we're putting people to sleep to make them feel better, right?
2:23
Typically.So there's we want to be really precise palliative, sedation in general would just mean that sometimes we need to sedate patients in order to treat their symptoms.So if they're so agitated or they're in so much pain that they were having a hard time, treating them, sometimes the treatment that we give can also see Date and then can be to the point of unconsciousness.
2:49
Sometimes there's also terminal palliative, sedation and this just like it sounds means sometimes at the end of life pain is so intolerable that there's almost no way to treat it or really no other way to treat it.
3:05
Excuse me.There's no other way to treat it then completely sedating the patient to unconsciousness so that they can die more peacefully.Okay.So for example, we have somebody who has I don't know what's a really painful condition like bone cancer.
3:23
Yeah but the first thing I thought of to.Yep.Yeah so bone cancer is really, really painful and the normal pain medication isn't working is that the but the situation is, right?So it's actually not all that common.We can typically relieve pain symptoms at the end of life but there are some conditions that are just so painful that there's no way you Could give the amount of appropriate pain medication, without accidentally killing them, or hastening their death or putting them into an unconscious state.
3:54
So we want to be really careful when we do this, but there are times in which that is really the only way to manage symptoms is to sedate somebody so heavily that they become unconscious before they die.So so most hospitals will have some sort of policy on when this is acceptable and when it's not acceptable.
4:14
So we had a Question from staff about a patient who had come in with, that's a moderate dementia, but this was his only condition.This is his only illness, and he was getting a little aggressive with staff and he was in, he kind of chronic pain condition as well.
4:36
And we were palliating, the chronic pain condition, but his aggressive behavior was pretty intolerable to the staff of the time and to his wife.And she asked us to give him terminal, palliative, sedation, mmm.
4:53
So it's one thing I love about clinical ethics is that the layers?Just keep going and going, right?So we've got palliative, sedation.We were laying on Terminal, palliative, sedation, and then we're laying layering on Terminal palliative, sedation for a psychiatric condition.
5:15
Right?So dementia and then we're laying layering on palliative, see terminal palliative, sedation for a psychiatric problem, being requested by a surrogate.All right.Yes.
5:31
So you can maybe imagine why this made staff uncomfortable?Yeah, cuz so dementia is technically a terminal illness but you are not Terminal in the terminal phase until we project.
5:49
You have approximately six months of life or less.So in the state of Texas and in most places, this is the requirement.We can't call you terminal until you reach a state where Physicians would say it is predictable that you would die within the next six months.
6:07
So and how good our doctors about predicting whether there's six months left.Well, it sort of depends on the condition.So in general, not great, but not so far off.Its, it's not typical that a doctor would say.
6:23
Yeah, it makes sense to me, that you die in the next six months and then you live, 20 more years.That's pretty rare.Are they perfect or exact with this?I mean, six months is sort of an arbitrary line except that it counts for hospice.And it counts for the Addition of terminal.
6:40
So you are eligible for hospice.If doctors say, they think you only have six months or less to live or in the state of Texas.And in many other states, your living will or mpo, a, your medical power of attorney.Only kicks in when you are in the terminal phase of an illness.
6:59
So that's six months really matters legally.Even if we recognize that it can be a little squishy around the edges.So It's a best prediction.But dementia is really hard in that.
7:15
It's so hard to say with dementia exactly how much time somebody might have left.So there are stages of dementia that we associate with the sort of terminal phase.But this patient has what I would call moderate dementia and is probably not at the end stage of life, okay?
7:34
So maybe not terminal in the way that you described it, probably not.So the first question, It is, you know, so our Hospital only will do this under that condition.So and that I've never seen a hospital policy that didn't say that.So if you're going to give terminal sedation, it has to be in the terminal phase of an illness.
7:52
So that's sort of the first question is, you know, is he in the terminal phase of this illness?And what I'm hearing from staff is like, probably not, you know, he, he has had to mention for some time but we don't think he's at end-stage, dementia quite yet.
8:08
Gotcha.Okay.But despite that, his wife is requesting this sedation, right?And so this is, and this is not something we hear very often, right?So, typically, family members and less there in the medical field themselves, wouldn't just know what palliative sedation was so my very smart intern.
8:31
Googled just Googled palliative, sedation because she was also unfamiliar I think and she said, did you know, dr.Stall, I make her call me Doc, I'm just kidding.But I think she does call me back so she says dr.Saul did you know when you Google palliative sedation?One of the first things that comes up is a right to die website, that advocates for physician-assisted, death and says on that website.
8:56
That if you live in a state that doesn't allow for physician 8 and dying or Medical Aid in dying that you can instead request palliative, terminal sedation, Interesting.This reminds me of other topic.We covered in a previous episode about voluntary, stop V said, voluntary, stopping eating and drinking.
9:17
As another way of controlling end of Life Institute in places where physician-assisted, suicide, or physician Aid in dying is not legal in that jurisdiction.So, this is a different work around well, so this would be similar.
9:35
And, and remember in that Episode.We talked about the sort of again the staff being more or less comfortable with the idea of like aiding somebody and dying by relieving pain symptoms associated with stopping eating and drinking.So one difference there is that it's typically patient initiated.
9:53
So the patient him or herself says I want to stop eating and drinking so that I can die this case with palliative terminal.Sedation would be like that in that we would what was being requested was that we stopped feeding Seeing this patient so that he could die.
10:10
But in the meantime to sedate him.So that he wouldn't experience any of the associated pain or discomfort with stopping eating and drinking, okay?Interesting.And so, in the way that I understand V said or voluntary stopping eating and drinking is that the patient themselves is making that choice to not eat, right?
10:32
But in this situation, what you're describing is that we Care providers are sedating.The patient to the point that they're asleep, basically.And when you're asleep, you can't eat or drink and that will be actually the modality of their death.
10:48
So that's correct.So this makes it's one thing for a patient to ask for this.It still makes a lot of stuff uncomfortable, it's still more uncomfortable, that this is being requested by his wife.So then the question is, do you think that the patient would have wanted this?
11:04
And the staff is generally agreeing know No.I mean he has some pain issues, but now that were medicating him properly, they seem to be relieved.He was pretty agitated but we've been able to relieve that as well.So we're not really sure.Now that we've been able to relieve his pain and distress, there seems to be no reason to go this extra step, but she's requesting it and saying that, this is what she thinks he would want, or he would have wanted in a state in which he was not demented.
11:33
Hmm.Yeah.So if the condition and that justifies, Today's palliative sedation is intractable or uncontrollable pain.This, the case that you're presenting is that that condition doesn't apply and therefore, maybe palliative, sedation in general wouldn't even be appropriate exactly.
11:54
So we get to rule number one of O.R.These stalls rules.These are stalls rules for terminal sedation.We remember one, the patient must be experiencing uncontrollable.The or refractory symptoms, despite optimal treatment strategies.
12:13
So this is a treatment of Last Resort.You only give terminal palliative sedation if there's no other way to relieve the symptoms of pain and distress at the end of life.Yeah.Okay I can get on board with that first one.Does it require stalls rules?
12:31
Number one you've had a sedation.Does that require that all other treatment options have been exhausted and proved to fail.Well, yes and no.All other reasonable treatment options that the physician thinks would potentially work, so it's not any and everything.
12:50
You're not, you know, giving things for the sake of giving them, but the Physicians need to agree.Basically, we've tried everything that makes sense.In this particular case.Yeah, everything that's reasonable.Okay, great.Okay, so rule number two and I know people are going to slam you on this because I know people hate this phrase is is we have to follow the rule of double effect, okay?
13:15
But or I'll rephrase because it's only actually applicable to a couple of the double effect rules.We cannot give terminal palliative, sedation with the intent of causing the patient's death.Okay, so are the intent of palliative, terminal sedation should be to relieve the symptoms of pain.
13:37
All right, so this is why we sedate people is because that's the only thing that's going to help relieve their pain symptoms or their distress symptoms, but we can't be doing it with the intention of killing them, right?Okay.So are you okay with that particular?Yeah?Yeah, yeah, I'm on board with we do what we ought not to Color patients, right?
13:57
Yeah, and I get so we should have a whole episode on double effect because it's it's more complicated than that.And I know people are going to give me a push back on this, but in general we this is not what we're trying to do.The intent of the of the sedation is to relieve pain.
14:13
Sometimes not to hasten the death of the patient.And in this case, it's pretty clear that the wife of this patient.Her goal is actually to end the patient's life in a more controlled and peaceful way and that's not a bad idea.Intention, it's just that that's not what we do in the state of Texas or in most other states, particularly those that don't allow physician-assisted suicide.
14:35
That's right.So there's only a handful of those.So in every other state you have to mind this rule.Yeah.So intentions matter I'm on board with that one.Okay.All right.Rule number three is I'm calling proportionality.Okay, it's related but slightly differently.
14:52
Articulated in that.I want to say the level of sedation That should be as little as needed to relieve the patient's symptoms.So we're not maxing out pain medication simply for the fact for the goal of putting him under or making him unconscious, we level up, right?
15:11
So we try typically at a palliative care team will do this.I'll get this to a second, but you give what you think would be an adequate.You don't want to start too low, because a lot of these drugs take a while to kick in.So you don't want to, you know, start so low that It's not going to do anything and you can't actually get them pain relief for several days that would be bad but you don't want to Max it out first go you want to give what you think is reasonable and then ratcheted up.
15:37
If that's not working, you don't want to immediately sort of just knock them out unconscious giving pain relief, right?And so the the phrase that we hear all the time in the hospitals that they titrate, right?That they are titrating the medication to the the symptoms.
15:54
Okay.All right, I'm on board with that one, too.This one also isn't working for us in this case because it seems like the goal, even if the goal is not to hasten death, the goal shouldn't be simply to induce coma or deep sleep, but it should again be to relieve symptoms.So, we need to make sure that we're doing that appropriately.
16:11
All right.Rule number four.I'm calling terminology and we sort of already hit on this but you need to have consensus that the patient is in a terminal phase of their illness.Okay?So that rule of six months again.And actually for palliative, sedation, or terminal palliative, sedation, most agree that the patient should actually be imminently dying like even more so than six months they need.
16:36
If you're going to stop feeding them or giving them hydration and nutrition, they need to be pretty close to death.Probably even closer than six months.So this is kind of debated but I think actually, it shouldn't merely be six months.It might it should be more like days to weeks at best, okay?
16:54
Because, because it, Well, actually potentially be, the not feeding them that will be the cause of their death.And we don't want that to be the case, right?Okay.So again, we ought not to kill our patient, a lot of these sort of hit on this.All right, the rule number five is we need to get appropriate consent.
17:15
So the patient or their legal representative has to be aware of a few things.So this, the kind of components of informed consent that the patient does have an irreversible illness.That the patient could die in this unconscious State while sedated and that palliative sedation is the sort of root we're going.
17:34
So this isn't necessarily a problem in this case but there is some worry in the literature that I found that you know we might be not well explaining what the goals of palliative sedation are.So we want to make sure that that's the case and in any case and as maybe especially this case, we'd want to check in about why the legal representative, why the surrogate is choosing this?
17:55
All right, so what are the motivations?What are the intentions?What do they think?The patient him or herself would have wanted?And we should do a whole episode about this because I think it's really fascinating, but in a case like with this patient, where he actually seems to have, no intent to die.But his surrogate.
18:11
His wife is saying, if he prior to his dementia, he would have said, this was an intolerable state, but in his demented State, he's saying no, I'm fine.Which, which person the before person or the current person wins out in the That debate.
18:28
Yeah, that's that.That needs to be a whole different because, yeah, that gets really complicated really quickly.When you start talking about, current persons versus past persons in terms of wishes and interests and that's tough though.
18:43
Yeah, interesting, but so rule number of what do we want to rule number five, Sol's rules, and number five.So this one is basically that this, that this decision to pursue palliative, sedation is okay, for a surrogate to Quest.If these conditions are met right.
19:00
Yep.And then number six, the final rule, I like calling them rules, okay?Because it sounds very legal and mandatory is that you need to support, you need to consult supportive and palliative care.So, most most hospitals will have a team.
19:17
Gosh, I hope so.I know they don't all but hopefully you have a supportive and palliative, care team, whose job it is to think about appropriate levels of pain medication.Ian support people with gold making at the end of their lives.Like these sorts of things, they are the best team to administer palliative, terminal sedation, but also to work with families about whether this is appropriate or not for the patient.
19:43
Yeah, so one of the hospitals that I do Consulting with actually renamed their palliative care, team to the advanced illness management team.So interesting, I kind of liked.Yeah.Because part of what we think about with palliative care, is that provision that they're working with serious illness conversations, right?
20:01
Right?Yeah.Well, good.Alright.So those six rules answer the questions presented in your case, well, so in our case, at least as it was initially presented to me, almost None of these conditions had been met.Okay, so the patient we didn't think was terminal.
20:18
We thought the intent was to end his life.We thought it wasn't, we weren't at that proportional stage yet where we had actually tried things that were working.And so we didn't need to ratchet them up.There was consent, although I will say and this is sort of, I think unfortunate when it was brought to the wife's attention that ethics was reviewing the case, she immediately kind of retracted her Request and said, oh no, never mind.
20:46
I don't like as if we were the ethics beliefs, or she was somehow going to get in trouble, and that's to me and unfortunate reaction because I think it says something about about how people think about ethics, but I do know.What do you think?Yeah, I present ethics specially in the clinical setting.
21:02
When people are like well who are you and what are you doing?I just generally described it as we're here.Our team is here to help make difficult decisions and so yeah.Yeah, we often get that that misconception that we're there as the police or tell people what is right and wrong, which really, is not the role of clinical ethics.
21:22
Yeah.Or to somehow, like, get people in trouble for asking for things, there is no, so it kept people kept asking me, is it okay for her to ask, this asked for this?And I kept saying she can ask for anything, right?It's our job to say whether she can receive have it or not, right?
21:38
Have it or not if we want to fulfill that request, but you should never feel like you're going to Trouble for asking, for something for your, loved one or yourself, while in the hospital.All right?You know, there are some Physicians who are like, oh gosh, they, you know, went on dr.Google.
21:53
And now there, but I actually think that's a minority of people.We want people to be involved and to ask questions.That's appropriate.So what she asked for?Wasn't something we could do, but it wasn't an appropriate question.Yeah.Yeah, good.Yeah.What an interesting topic.
22:09
I bet there's going to be a lot of comments and Feedback about stalls rules.Well, I hope so.And actually can I throw out one more thing that actually I realized after the case.Yeah, resolved that I didn't quite think about.
22:26
I realized that there is a big debate about whether existential suffering.Counts in these cases.Yeah, that's actually I've been involved in cases where that was the case and maybe that's a topic for another episode as well.
22:44
This idea of existential suffering terminal existential suffering, right?So just a, just a tease, the listeners.It's, I think most people would agree that if somebody was at the end of their life and they were experiencing just unbearable intractable suffering, I don't think there are many people who would say it's not.
23:03
Okay, to sedate them to the point where they're they fall asleep, so they don't experience that pain.All right, that'd be weird to demand.Somebody experienced horrible pain.At the end of their lives.But what is much more debated is whether existential suffering by?
23:19
Which we mean they're just like kind of experiencing such mental anguish, right?It maybe isn't physical but it is so existential so destructive cycle, like psychologically and emotionally.Yeah.And usually that's about the fear of death or it might be about just other life circumstances, it does that count.
23:38
Cuz they're pretty distressed and and often very anxious and we can control some of those symptoms.But you know sometimes not all of our suffering is physiological pain suffering, right?We all recognize that we can be in terrible suffering that isn't necessarily biologically-based, although, maybe I'll get pushed back on that to maybe it's all somehow biologically-based, but should that also be should people like that.
24:03
Also be potentially receiving palliative, sedation.And I think some people will say No and some people will say yes.So that's that's a debatable topic.Yeah, great topic.I thanks big fan of stalls rules.Thanks cool.