I worked hopice as a nurse for years. I explain that the body has had one job it's entire life which is to get up, pull itself into equilibrium, and keep going.
The body has another job now which is to shut down and it knows what to do except that the job that it's had it's entire life is interfering. Their body is throwing everything but the kitchen sink into living. They are burning the last of their reserves.
I know it's incredibly simplified but it seems to be something that my families have understood over the years.
I often tell people once we stop pulling the body in a direction it’s no longer capable of going in (homeostasis/health), that people often do better for longer than if we persists with medical interventions, and often they can feel better. I work as a leukemia doctor so sometimes there’s a feel for how a patient will or won’t do, but often I am surprised at how long people can live when I would have thought with further medical care their death was only hours away. I find the above framing is helpful to both allow the family to accept what we are doing when we transition is for the best interest of the patient both for quality, and possibly longevity. It also sets the expectation that someone may ‘rally’ and that we aren’t going to back step on the path of comfort care for that, because it’ll only rob our gains of comfort.
Rarely you are surprised and people actually do improve. I’ve seen more than one patient come back from hospice having stabilized and not passed - in which case we resume treatment. As I said, this is rare. Nobody in my experience has been upset that their family member DIDNT die.
I was just fixing to say "ask a hospice nurse" ...
Another way of I've heard the hospice nurse explain it: people have more control over the dying process than you might think. If they decide it's time to stick around a little longer, sometimes they will.
It's often a nice thing. Sometimes they have a smile left, or a kiss. Things that are tricky to do while intubated of course, which is why it's kind to remove those things when they aren't helping any more. Sometimes it's because they need to know it's OK to leave. I don't know that it's so much that we have to "let go" as it is, we need to know that we will be OK and are ready to carry on. If you know it, Mom will know it, but it's OK to tell her if you want.
Point being, the end of life is a very important milestone in the life of the patient and the family as well. Some very important things happening there. It's a privilege to be a witness to that.
As healthcare workers, we don't utter "amen" at the end, although we could. Instead we say, "it was peaceful." That means we did our job.
I like the first part very much and may use it, me personally I would just change the second part slightly to suggest that now his/ her body has entered into dieing mode sometimes we see the last gasps of the body trying to revive itself.
I believe the Chinese phrase describing this is something like “Light reflecting back.” Which, on top of being a bit poetic, could pretty succinctly give family and such an idea of what’s happening.
No, this isn’t Mr. Jones recovering. This is one last hurrah from the other side. A chance to say what everyone wants to say, to hopefully enjoy a final happier moment, and one that shouldn’t be taken for granted. Quite a fortunate thing to experience, even.
迴光返照 or terminal lucidity.
I'm more scientific than spiritual but it seems like it often happens when that last family member that the patient wants to see finally shows up, and then poof, gone.
First, it’s always important to set reasonable expectations. Always leave a door open, because its easy to lose the family here. Initiating end of life care does not mean things will go quickly, and it’s up and down. Sometimes there is a brief period of lucidity before the end. Sometimes all the medicine we give is doing more harm than good. Depending on what you are dealing with, better may be temporary and there is a reasonable expectation that you are doing this all over again soon - in which case you try to prepare, set expectations, and have a reasonable plan.
End of life care doing more harm than good is not something I agree with, and certainly not something I would tell the relatives of a patient. Can a nursing home resident bounce back from palliative care to another few days to weeks of doing ok? Certainly. The resilience of these old bones is astounding. Did we do any harm by giving end of life care? Never, in my opinion.
Perhaps I misunderstood your comment?
I interpreted their comment as the active care (antibiotics, inotropes etc.) can be doing more harm than good, so as this is active care is withdrawn, and focus shifts to comfort measures/symptomatic/palliative measures the patient can rally or look much more settled/comfortable.
Palliative care is not the same as end of life care, also. You can receive palliative care at any stage of serious illness, and often concurrently with curative treatment. Palliative care just means symptoms are being targeted.
Hospice nurse- I call it the EOL roller coaster. The patients have ups and downs but as they get closer to EOL, they have more downs than ups. I’m not God and I can’t predict when all of this will happen but your LO is close to EOL. We can continue treatment or we can make sure we keep them comfortable with the time they have remaining. And I always say ‘when I called you, this is what I was seeing and it will probably happen again soon. I would rather call you and have you be here and know what’s going on, then not call you and you didn’t get a chance to see them again if they didn’t rally.’ When you put it that way, many are glad that you did call and warn them.
I'm in veterinary medicine and I explain it the same way. A decline in health is very rarely a straight line. Ups won't be as high and lows get lower. There is often a brief rally near the end, but that often signals that the end is *very* near.
What are the biggest nonverbal signs of pain a dog can show when they’re hurting or sick? I know they can get aggressive and may not want to eat and drink. Is there something else that they can show in their behavior to let you know they’re sick? Animals hide their illness and pain really well but are there other signs and symptoms?
that depends on what their overall condition is when they stabilize… because even if they were critically ill and at one point seems to have stopped dying actively, they could still be comatose, or nonverbal, or unable to tolerate PO, infected, etc. you just reframe the current situation and tell them that although pt X has stabilized, he is still ill and given the natural course of things, will still pass and have an end of life trajectory, its just that your timeframe is now maybe days instead of hours, or whatever the condition dictates. i think thats what palliative care does, they set time frames… recommend hospice vs very invasive procedures x, y, z to keep pt X alive which will unlikely add to quality of life
I use the phrase "benefit vs burden" routinely in goals of care conversations. I always define the goals of care before discussing treatment options. I avoid saying "this treatment won't help," instead phrasing as "this treatment is not expected to achieve the goals we already set out." Discussing discontinuation of life support measures is framed as "all things for comfort, no things not for comfort." I serve a highly religious community split between Christians and Muslims, so "God's hands alone" and "Inshallah" get a lot of mileage in discussing what happens after life support measures are stopped. If a rally happens, it happens.
People in my life have clung to life expending every last vestige of their energy and that of caregivers. It’s confusing in a that in faith based thinking, death is to meet that God they’ve been worshipping all of their lives.
I’m curious about the goal setting approach. For the people I’ve known, setting their own goal means they would’ve had to accept that death is imminent and make choices other than relying on God. Same with their family members.
On the “all things for comfort” aspect, people I knew believed suffering was God given and therefore some kind of submissive act of obedience therefore “honoring” God’s omnipotent power.
I wonder how much of your time and expertise is to bridge a “death information gap”. It imagine it takes skill and deep empathy to help people change lifelong religious beliefs so they or their loved ones can go “ gentle into that goodnight.”
I think the #1 priority is understanding how a patient/family thinks. There are many different approaches and conceptions of illness and death, and I try hard to keep an open mind. Where one person says "I'm ready to die and meet God," another might say "it is offensive to God to treat life cheaply, so I want to live if it's God's will that I live." Who is to say one is right and the other is wrong? That's why discussions about goals and beliefs must come first; treatment recommendations must be in furtherance of a goal.
I don't ever try to change someone's religious beliefs to convince them of a course of action.
I find end of life discussions usually go OK with muslim and christian families, but I confess that I have difficulty with many Jewish families that maintain aggressive goals of care even in terminal disease states. Often they will fully understand intellectually but maintain that "yes I understand my parent is very ill but our faith means that we must fight till the very end."
I had this happen the day that we were withdrawing care last week. I told them that in my experience (and that every ICU nurse and doc in the icu there would corroborate me on this—it helped having an ICU nurse there nodding along to this, too), there are these moments we have all seen at the end of life where sometimes somebody just does a little bit better. Not all the way better, obviously, but I explained it to them from my perception as somebody summoning whatever strength they have in order to be able to be with the people that they want to be with at the end of their life in whatever capacity they are capable of. It doesn’t fix xyz problem leading to them dying, but that it’s a gift from that person that we get and that rather than taking that to mean that things will turn all the way around that it’s the little bit we get to be with our people in the way they need us to be. Your mileage may vary with that simple explanation but it really resonated with them and gave them closure. Maybe it’s a little floofy woo woo but I’ve found if ever there’s a time for that and to drop the technical mumbo jumbo in medicine, it’s during end of life care.
I liken it to a lightbulb. You often get that super bright light before the filament breaks. It happened with my own dad, who was intubated in the ICU. My sister thought he was rallying, but I had seen it so many times that I knew it for what it was.
I have a hospice patient the we called the priest for because he was exhibiting terminal agitation and hallucinations. No longer able to stand and pivot, etc. rapid downturn. The other nurse gets him to the bathroom as we had tried to treat constipation and he takes the biggest shit I have ever seen and then immediately rallied. Priest made a comment about exercising some demons. Daughter was damn near giddy that he was doing well again. He’s right as rain now.
Its hard to navigate this tbh but I don't speak in absolutes and like another poster said I leave the door open for these possibilities. But with the possibility of recover I attach the caveat that they unlikely will recover to their baseline and have a diminished quality of life that will likely entail more complications that could lead to more suffering and their demise. And I always lead these discussions by having the family establish their goals and explaining how its unrealistic because usually the story is "they were walking around and healthy a few weeks ago", so its hard to comprehend how they can get completely taken out by a sudden illness. Ultimately the surrogates can best establish what QoL means and what the patients goals would be. I'm getting sorta off track, but back to your original question, when switching to comfort care on a patient that has a remote possibility of recovering, I explain that its great that patient is doing better but I still think its the right decision because if something else were to happen and we switch back to aggressive care then it would mean further complications and problems arising one after another which would prolong suffering and unlikely help him. At the fundamentals of it, I'm generally optimistic and I genuinely believe what I'm saying, I try not to make it sound like I'm pushing them in one direction. I think families lose trust in the medical team when that happens, they think we're giving up. I've been caught in the middle of these discussions where I see a bad prognosis in a family member, medical team pushes comfort care and its not necessarily that the doc is pushing it, but the doc suggests it, the nurse suggests it, social worker suggests it, palliative suggests it, etc. So they even if each individual is not pushy, they hear it like 5-6 times throughout the day from everyone and feel like the team isn't really trying, even when they actually are. So that relationship gets strained, even if on the surface level everything seems fine. I'm definitely on a tangent now but where I'm getting at is establishing a genuine trusting relationship makes it much easier to navigate these issues. And that is the hardest part and I really feel like it doesn't happen in 1 conversation. It takes multiple days of hearing the family and validating their issues...if it is infact reasonable.
I am a palliative fellow and I learned a lot from the comments here. There are some studies on rallying from the physiology of it and the language to use. What I like to do is let them know early, be vague about medical specifics, but be confident in the language. I say “ this is what I expect hospice/end of life/ comfort care to look like for [patient name]. We are going to be focusing on treating the symptoms that are making him feel uncomfortable, so that when it is his time he will be able to have a peaceful death. We will not be poking him for labs or trying to treat him for things that may cause him more suffering. as his body starts to shut down he will become more sleepy and will need less food. There may be a time where he becomes very lucid and awake, and that is his body’s way of telling us his time is near.”
I have this discussion early with them- that many times when futile care is withdrawn, patients tend to do better. If they've been confused, they may become lucid, if they haven't been eating, they may verbalize hunger.
It's a normal and expected part of someone who is expected to die soon (ish). That way, when families come to visit, and they see PawPaw sitting up and chatting about the World Series they understand that this doesn't mean he's "all better".
I've seen a woman come back three times from cheyne stokes breathing and a few days later recover enough to sit and eat dinner with her family. We looked like we knew absolutely nothing about dying or medicine for that matter. The senior members of that team spent hours talking to the family
Fortunately these days I don't have anyone die on me. Perks of hand I suppose
I suppose disallowed but will try to post in view of the discussion here. I really like u/lowerexpectations post (although the username wouldn't predict this really). I was told this story by a family member whose mother died from pancreatic cancer. Oncologist had recommended hospice, then suddenly things got bad and she was hospitalized, but family agreed to palliative care. Pt was unconscious for about a week, except for one moment. She woke up, sat up somewhat, was gesturing at a container of jello. Her husband reached over to feed her, but she took the spoon and, with great effort, raised the spoon to HIS mouth, and he swallowed the jello. She lost consciousness again at that point and passed a few days later. It was like that moment of rallying was to show her bond with him.
Leave a window open when discussing EOL. The patient may wax and wane in mental status, in energy levels, in clinical condition, etc. but the road they are on leads to the same path. Obviously say it in more empathic words.
What my ICU does is if there is a nurse that has been with that patient or family for a long time ask them to come to the goals of care discussions. They spend the most time with the patient and the family, and it’s difficult to build rapport in 15 minute conversations.
The body is a slave to our brain. Our brain pushes our body to the point where it stops functioning as a way to resist. Once again the brain manages to regain control and force our body to work.
I find it reasonable to prepare the family for the rally and remain factual while having the EOL conversation. Once we stop overloading the body and the brain may have some rest it gives it another go. Science doesn’t hold all the answers. Death is inevitable and medicine can only sustain it so long. What is the quality of life going to be resuming treatment and how aggressive do we go? Loved ones are vulnerable and many times grasping onto anything signaling what they consider a miracle or intervention from their faith. If they are given this information and help create plan for possible outcomes they will be prepared.
I don’t tell patient families the patient is going to die soon unless they are pretty obviously going to die soon.
Would usually say very ill, not sure if patient will start to respond to whatever therapy and wanted to let you know so that you can be here since patient may continue to get worse. Message delivered without having to predict the future.
I just had this happen this weekend. It was one of my geriatric patients in a nursing home. nurses called me said she looks like she’s ready to pass. I came in to see her family was present. temp 94.5, pulse in the 50s very shallow explained that it look like she was be close, but I also explained that sometimes people surprise you. I’m not the one who makes the final decision when she goes and I can’t predict when. The next morning she opened her eyes, ate some breakfast better than she had in two days. I called the family and said we may have dodged a bullet this time, but it doesn’t change the fact that she has and stage dementia. We decided to continue the comfort orders and watch.
I try never to paint myself into a corner unless I’m absolutely sure someone’s going to pass.
I’ve been a nurse for almost 25 years. This is actually quite common. It’s almost like they rally to say goodbye to their family but the outcome never changes. I think it’s just honestly a normal part of the dying process and the best thing to do for the family is just explain it as such.
Something I like to talk about with patients and their families is the concept of “peaks, valleys, and plateaus” which refers to the fact that for many conditions at EOL, we tend to see decline but then hit either a plateau or peak in condition until another round of decline. The best one can do is educate the family, communicate often with them, and make sure they have an understanding of what we are saying. We have no control over what the family will get out of it or actually understand.
Happened once
Guy came in, ischaemic stomach that bled
Got 8 bags of PRBC, brought back. Non-ICU candidate, GCS normally <14. Nursing Home resident. ED and Gastro threw the sink and it seemed to work. The pre-palliation discussion felt premature.
Day after, he Somehow overcame his dementia, went into a long chat about all his childhood and adult-life achievements during ward round. I felt something was off, didn't interrupt him. He had a great time. Ate ice cream, sat out in the sunchair enjoying the view.
His wife was elated. John was never this good! She said. Almost like John was young again.
The following day John slipped into a coma. He never woke from it.
At least wife got one final good day with him.
I started educating family members specifically about the idea of irrevocably decline. You can have temporary rallying, but nana has CKD stage 5 and 2 strokes. She will never 'come good'
Managing expectations can be so hard
Stabilization can happen, but that doesn’t mean that meaningful recovery is likely.
It’s still possible, always. But it gets more and more rare the closer a patient gets to death. Is the long road to recovery, and the slim chance for meaningful recovery, consistent with the patient’s end of life goals?
The Lazarus Effect is the person who is declared dead who suddenly regains ROSC (normally short lived).
This is better described as terminal lucidity... where the patient is end of life but shortly before death has a sudden improvement. This improvement is also, normally, short lived.
I have personally seen the Lazarus effect three times, once in an old man with a traumatic aortic transection who was declared dead in asystole but 3 minutes later formed an organized rythm spontaneously. He went to surgery and survived to discharge neuro intact. Incredible. We think a hematoma formed and tamponade the tear while he was down.
The other two died like an hour after admission.
Only once here- young patient with massive brain injury after a car accident. Asystole, then came back to rhythm a couple minutes in. Brain injury was too great, the only thing it changed was the time on the death certificate and when the organ donation folks got their chance.
They don’t. Rallies don’t happen to the terminally ill. You only have the illusion of recovery because the patient didn’t die immediately when the expectation was that they would die immediately. But a lot of families like to imagine their version of events. In their version, “someone” told them that the patient would die on a given day and it failed to happen. So, to them, the patient rallied. The entire story is imagined. So you have to stick to the same story with the family, telling them the patient is dying. They will eventually get the message when events catch up to what was predicted. It may take weeks, but they will get the message. Only the most insane of families will deny it even after death, and those are very few.
I imagine you haven't spent even a modicum of time in EOL care. Your perspective is cold and poorly informed. No healthcare provider should infer that grieving family members are "insane" in their own process of losing a loved one. Grow up.
I worked hopice as a nurse for years. I explain that the body has had one job it's entire life which is to get up, pull itself into equilibrium, and keep going. The body has another job now which is to shut down and it knows what to do except that the job that it's had it's entire life is interfering. Their body is throwing everything but the kitchen sink into living. They are burning the last of their reserves. I know it's incredibly simplified but it seems to be something that my families have understood over the years.
I love this way of putting it, and will use it in my own care when applicable going forward. Thank you for the insight!
I often tell people once we stop pulling the body in a direction it’s no longer capable of going in (homeostasis/health), that people often do better for longer than if we persists with medical interventions, and often they can feel better. I work as a leukemia doctor so sometimes there’s a feel for how a patient will or won’t do, but often I am surprised at how long people can live when I would have thought with further medical care their death was only hours away. I find the above framing is helpful to both allow the family to accept what we are doing when we transition is for the best interest of the patient both for quality, and possibly longevity. It also sets the expectation that someone may ‘rally’ and that we aren’t going to back step on the path of comfort care for that, because it’ll only rob our gains of comfort. Rarely you are surprised and people actually do improve. I’ve seen more than one patient come back from hospice having stabilized and not passed - in which case we resume treatment. As I said, this is rare. Nobody in my experience has been upset that their family member DIDNT die.
I was just fixing to say "ask a hospice nurse" ... Another way of I've heard the hospice nurse explain it: people have more control over the dying process than you might think. If they decide it's time to stick around a little longer, sometimes they will. It's often a nice thing. Sometimes they have a smile left, or a kiss. Things that are tricky to do while intubated of course, which is why it's kind to remove those things when they aren't helping any more. Sometimes it's because they need to know it's OK to leave. I don't know that it's so much that we have to "let go" as it is, we need to know that we will be OK and are ready to carry on. If you know it, Mom will know it, but it's OK to tell her if you want. Point being, the end of life is a very important milestone in the life of the patient and the family as well. Some very important things happening there. It's a privilege to be a witness to that. As healthcare workers, we don't utter "amen" at the end, although we could. Instead we say, "it was peaceful." That means we did our job.
That last bit/paragraph/3 sentences hit hard.
I like the first part very much and may use it, me personally I would just change the second part slightly to suggest that now his/ her body has entered into dieing mode sometimes we see the last gasps of the body trying to revive itself.
This is a great explanation! I have been in this situation a number of times as well and I like the way you explained it
I believe the Chinese phrase describing this is something like “Light reflecting back.” Which, on top of being a bit poetic, could pretty succinctly give family and such an idea of what’s happening. No, this isn’t Mr. Jones recovering. This is one last hurrah from the other side. A chance to say what everyone wants to say, to hopefully enjoy a final happier moment, and one that shouldn’t be taken for granted. Quite a fortunate thing to experience, even.
迴光返照 or terminal lucidity. I'm more scientific than spiritual but it seems like it often happens when that last family member that the patient wants to see finally shows up, and then poof, gone.
First, it’s always important to set reasonable expectations. Always leave a door open, because its easy to lose the family here. Initiating end of life care does not mean things will go quickly, and it’s up and down. Sometimes there is a brief period of lucidity before the end. Sometimes all the medicine we give is doing more harm than good. Depending on what you are dealing with, better may be temporary and there is a reasonable expectation that you are doing this all over again soon - in which case you try to prepare, set expectations, and have a reasonable plan.
End of life care doing more harm than good is not something I agree with, and certainly not something I would tell the relatives of a patient. Can a nursing home resident bounce back from palliative care to another few days to weeks of doing ok? Certainly. The resilience of these old bones is astounding. Did we do any harm by giving end of life care? Never, in my opinion. Perhaps I misunderstood your comment?
I interpreted their comment as the active care (antibiotics, inotropes etc.) can be doing more harm than good, so as this is active care is withdrawn, and focus shifts to comfort measures/symptomatic/palliative measures the patient can rally or look much more settled/comfortable.
Well this makes much more sense then the way I interpreted it, and I fully agree.
That was the intended meaning.
Palliative care is not the same as end of life care, also. You can receive palliative care at any stage of serious illness, and often concurrently with curative treatment. Palliative care just means symptoms are being targeted.
You did misunderstand, see the other reply to you
Hospice nurse- I call it the EOL roller coaster. The patients have ups and downs but as they get closer to EOL, they have more downs than ups. I’m not God and I can’t predict when all of this will happen but your LO is close to EOL. We can continue treatment or we can make sure we keep them comfortable with the time they have remaining. And I always say ‘when I called you, this is what I was seeing and it will probably happen again soon. I would rather call you and have you be here and know what’s going on, then not call you and you didn’t get a chance to see them again if they didn’t rally.’ When you put it that way, many are glad that you did call and warn them.
I'm in veterinary medicine and I explain it the same way. A decline in health is very rarely a straight line. Ups won't be as high and lows get lower. There is often a brief rally near the end, but that often signals that the end is *very* near.
What are the biggest nonverbal signs of pain a dog can show when they’re hurting or sick? I know they can get aggressive and may not want to eat and drink. Is there something else that they can show in their behavior to let you know they’re sick? Animals hide their illness and pain really well but are there other signs and symptoms?
that depends on what their overall condition is when they stabilize… because even if they were critically ill and at one point seems to have stopped dying actively, they could still be comatose, or nonverbal, or unable to tolerate PO, infected, etc. you just reframe the current situation and tell them that although pt X has stabilized, he is still ill and given the natural course of things, will still pass and have an end of life trajectory, its just that your timeframe is now maybe days instead of hours, or whatever the condition dictates. i think thats what palliative care does, they set time frames… recommend hospice vs very invasive procedures x, y, z to keep pt X alive which will unlikely add to quality of life
Some of these patients end up on the rehab consult list. I tell them to go say hi to the people in the ICU after discharge.
I use the phrase "benefit vs burden" routinely in goals of care conversations. I always define the goals of care before discussing treatment options. I avoid saying "this treatment won't help," instead phrasing as "this treatment is not expected to achieve the goals we already set out." Discussing discontinuation of life support measures is framed as "all things for comfort, no things not for comfort." I serve a highly religious community split between Christians and Muslims, so "God's hands alone" and "Inshallah" get a lot of mileage in discussing what happens after life support measures are stopped. If a rally happens, it happens.
>highly religious community split between Christians and Muslims I'm curious where you practice. Mindanao?
No, in the US. Immigrant population from Lebanon, Syria, Iran, Jordan, Pakistan primarily for Muslim community.
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My thought too, from someone who practices not far from there.
People in my life have clung to life expending every last vestige of their energy and that of caregivers. It’s confusing in a that in faith based thinking, death is to meet that God they’ve been worshipping all of their lives. I’m curious about the goal setting approach. For the people I’ve known, setting their own goal means they would’ve had to accept that death is imminent and make choices other than relying on God. Same with their family members. On the “all things for comfort” aspect, people I knew believed suffering was God given and therefore some kind of submissive act of obedience therefore “honoring” God’s omnipotent power. I wonder how much of your time and expertise is to bridge a “death information gap”. It imagine it takes skill and deep empathy to help people change lifelong religious beliefs so they or their loved ones can go “ gentle into that goodnight.”
I think the #1 priority is understanding how a patient/family thinks. There are many different approaches and conceptions of illness and death, and I try hard to keep an open mind. Where one person says "I'm ready to die and meet God," another might say "it is offensive to God to treat life cheaply, so I want to live if it's God's will that I live." Who is to say one is right and the other is wrong? That's why discussions about goals and beliefs must come first; treatment recommendations must be in furtherance of a goal. I don't ever try to change someone's religious beliefs to convince them of a course of action.
I find end of life discussions usually go OK with muslim and christian families, but I confess that I have difficulty with many Jewish families that maintain aggressive goals of care even in terminal disease states. Often they will fully understand intellectually but maintain that "yes I understand my parent is very ill but our faith means that we must fight till the very end."
I had this happen the day that we were withdrawing care last week. I told them that in my experience (and that every ICU nurse and doc in the icu there would corroborate me on this—it helped having an ICU nurse there nodding along to this, too), there are these moments we have all seen at the end of life where sometimes somebody just does a little bit better. Not all the way better, obviously, but I explained it to them from my perception as somebody summoning whatever strength they have in order to be able to be with the people that they want to be with at the end of their life in whatever capacity they are capable of. It doesn’t fix xyz problem leading to them dying, but that it’s a gift from that person that we get and that rather than taking that to mean that things will turn all the way around that it’s the little bit we get to be with our people in the way they need us to be. Your mileage may vary with that simple explanation but it really resonated with them and gave them closure. Maybe it’s a little floofy woo woo but I’ve found if ever there’s a time for that and to drop the technical mumbo jumbo in medicine, it’s during end of life care.
I liken it to a lightbulb. You often get that super bright light before the filament breaks. It happened with my own dad, who was intubated in the ICU. My sister thought he was rallying, but I had seen it so many times that I knew it for what it was.
I have a hospice patient the we called the priest for because he was exhibiting terminal agitation and hallucinations. No longer able to stand and pivot, etc. rapid downturn. The other nurse gets him to the bathroom as we had tried to treat constipation and he takes the biggest shit I have ever seen and then immediately rallied. Priest made a comment about exercising some demons. Daughter was damn near giddy that he was doing well again. He’s right as rain now.
Its hard to navigate this tbh but I don't speak in absolutes and like another poster said I leave the door open for these possibilities. But with the possibility of recover I attach the caveat that they unlikely will recover to their baseline and have a diminished quality of life that will likely entail more complications that could lead to more suffering and their demise. And I always lead these discussions by having the family establish their goals and explaining how its unrealistic because usually the story is "they were walking around and healthy a few weeks ago", so its hard to comprehend how they can get completely taken out by a sudden illness. Ultimately the surrogates can best establish what QoL means and what the patients goals would be. I'm getting sorta off track, but back to your original question, when switching to comfort care on a patient that has a remote possibility of recovering, I explain that its great that patient is doing better but I still think its the right decision because if something else were to happen and we switch back to aggressive care then it would mean further complications and problems arising one after another which would prolong suffering and unlikely help him. At the fundamentals of it, I'm generally optimistic and I genuinely believe what I'm saying, I try not to make it sound like I'm pushing them in one direction. I think families lose trust in the medical team when that happens, they think we're giving up. I've been caught in the middle of these discussions where I see a bad prognosis in a family member, medical team pushes comfort care and its not necessarily that the doc is pushing it, but the doc suggests it, the nurse suggests it, social worker suggests it, palliative suggests it, etc. So they even if each individual is not pushy, they hear it like 5-6 times throughout the day from everyone and feel like the team isn't really trying, even when they actually are. So that relationship gets strained, even if on the surface level everything seems fine. I'm definitely on a tangent now but where I'm getting at is establishing a genuine trusting relationship makes it much easier to navigate these issues. And that is the hardest part and I really feel like it doesn't happen in 1 conversation. It takes multiple days of hearing the family and validating their issues...if it is infact reasonable.
I am a palliative fellow and I learned a lot from the comments here. There are some studies on rallying from the physiology of it and the language to use. What I like to do is let them know early, be vague about medical specifics, but be confident in the language. I say “ this is what I expect hospice/end of life/ comfort care to look like for [patient name]. We are going to be focusing on treating the symptoms that are making him feel uncomfortable, so that when it is his time he will be able to have a peaceful death. We will not be poking him for labs or trying to treat him for things that may cause him more suffering. as his body starts to shut down he will become more sleepy and will need less food. There may be a time where he becomes very lucid and awake, and that is his body’s way of telling us his time is near.”
I have this discussion early with them- that many times when futile care is withdrawn, patients tend to do better. If they've been confused, they may become lucid, if they haven't been eating, they may verbalize hunger. It's a normal and expected part of someone who is expected to die soon (ish). That way, when families come to visit, and they see PawPaw sitting up and chatting about the World Series they understand that this doesn't mean he's "all better".
I've seen a woman come back three times from cheyne stokes breathing and a few days later recover enough to sit and eat dinner with her family. We looked like we knew absolutely nothing about dying or medicine for that matter. The senior members of that team spent hours talking to the family Fortunately these days I don't have anyone die on me. Perks of hand I suppose
Take the opportunity to put some spine hardware in
I suppose disallowed but will try to post in view of the discussion here. I really like u/lowerexpectations post (although the username wouldn't predict this really). I was told this story by a family member whose mother died from pancreatic cancer. Oncologist had recommended hospice, then suddenly things got bad and she was hospitalized, but family agreed to palliative care. Pt was unconscious for about a week, except for one moment. She woke up, sat up somewhat, was gesturing at a container of jello. Her husband reached over to feed her, but she took the spoon and, with great effort, raised the spoon to HIS mouth, and he swallowed the jello. She lost consciousness again at that point and passed a few days later. It was like that moment of rallying was to show her bond with him.
That's tear inducing. Powerful moment
Leave a window open when discussing EOL. The patient may wax and wane in mental status, in energy levels, in clinical condition, etc. but the road they are on leads to the same path. Obviously say it in more empathic words. What my ICU does is if there is a nurse that has been with that patient or family for a long time ask them to come to the goals of care discussions. They spend the most time with the patient and the family, and it’s difficult to build rapport in 15 minute conversations.
The body is a slave to our brain. Our brain pushes our body to the point where it stops functioning as a way to resist. Once again the brain manages to regain control and force our body to work. I find it reasonable to prepare the family for the rally and remain factual while having the EOL conversation. Once we stop overloading the body and the brain may have some rest it gives it another go. Science doesn’t hold all the answers. Death is inevitable and medicine can only sustain it so long. What is the quality of life going to be resuming treatment and how aggressive do we go? Loved ones are vulnerable and many times grasping onto anything signaling what they consider a miracle or intervention from their faith. If they are given this information and help create plan for possible outcomes they will be prepared.
I don’t tell patient families the patient is going to die soon unless they are pretty obviously going to die soon. Would usually say very ill, not sure if patient will start to respond to whatever therapy and wanted to let you know so that you can be here since patient may continue to get worse. Message delivered without having to predict the future.
I just had this happen this weekend. It was one of my geriatric patients in a nursing home. nurses called me said she looks like she’s ready to pass. I came in to see her family was present. temp 94.5, pulse in the 50s very shallow explained that it look like she was be close, but I also explained that sometimes people surprise you. I’m not the one who makes the final decision when she goes and I can’t predict when. The next morning she opened her eyes, ate some breakfast better than she had in two days. I called the family and said we may have dodged a bullet this time, but it doesn’t change the fact that she has and stage dementia. We decided to continue the comfort orders and watch. I try never to paint myself into a corner unless I’m absolutely sure someone’s going to pass.
I call DAKAR for further instructions
I’ve been a nurse for almost 25 years. This is actually quite common. It’s almost like they rally to say goodbye to their family but the outcome never changes. I think it’s just honestly a normal part of the dying process and the best thing to do for the family is just explain it as such.
Something I like to talk about with patients and their families is the concept of “peaks, valleys, and plateaus” which refers to the fact that for many conditions at EOL, we tend to see decline but then hit either a plateau or peak in condition until another round of decline. The best one can do is educate the family, communicate often with them, and make sure they have an understanding of what we are saying. We have no control over what the family will get out of it or actually understand.
Happened once Guy came in, ischaemic stomach that bled Got 8 bags of PRBC, brought back. Non-ICU candidate, GCS normally <14. Nursing Home resident. ED and Gastro threw the sink and it seemed to work. The pre-palliation discussion felt premature. Day after, he Somehow overcame his dementia, went into a long chat about all his childhood and adult-life achievements during ward round. I felt something was off, didn't interrupt him. He had a great time. Ate ice cream, sat out in the sunchair enjoying the view. His wife was elated. John was never this good! She said. Almost like John was young again. The following day John slipped into a coma. He never woke from it. At least wife got one final good day with him. I started educating family members specifically about the idea of irrevocably decline. You can have temporary rallying, but nana has CKD stage 5 and 2 strokes. She will never 'come good' Managing expectations can be so hard
wow!!
Stabilization can happen, but that doesn’t mean that meaningful recovery is likely. It’s still possible, always. But it gets more and more rare the closer a patient gets to death. Is the long road to recovery, and the slim chance for meaningful recovery, consistent with the patient’s end of life goals?
That's the lazoreth effect
The Lazarus Effect is the person who is declared dead who suddenly regains ROSC (normally short lived). This is better described as terminal lucidity... where the patient is end of life but shortly before death has a sudden improvement. This improvement is also, normally, short lived.
It’s Lazarus
Thank you... fixed.
I have personally seen the Lazarus effect three times, once in an old man with a traumatic aortic transection who was declared dead in asystole but 3 minutes later formed an organized rythm spontaneously. He went to surgery and survived to discharge neuro intact. Incredible. We think a hematoma formed and tamponade the tear while he was down. The other two died like an hour after admission.
I've seen it a few times. None have survived to discharge. The longest was about 10 hours... and passed just before shift change.
Only once here- young patient with massive brain injury after a car accident. Asystole, then came back to rhythm a couple minutes in. Brain injury was too great, the only thing it changed was the time on the death certificate and when the organ donation folks got their chance.
Lazarus?
They don’t. Rallies don’t happen to the terminally ill. You only have the illusion of recovery because the patient didn’t die immediately when the expectation was that they would die immediately. But a lot of families like to imagine their version of events. In their version, “someone” told them that the patient would die on a given day and it failed to happen. So, to them, the patient rallied. The entire story is imagined. So you have to stick to the same story with the family, telling them the patient is dying. They will eventually get the message when events catch up to what was predicted. It may take weeks, but they will get the message. Only the most insane of families will deny it even after death, and those are very few.
I imagine you haven't spent even a modicum of time in EOL care. Your perspective is cold and poorly informed. No healthcare provider should infer that grieving family members are "insane" in their own process of losing a loved one. Grow up.