How do you handle potentially unethical care in the elderly?

[chessknt]

Since leaving academia I have encountered this less frequently but still see it from time to time. I find that everyone (including myself) ends up jsut pandering in these cases with large nursing/financial/emotional energy expenditure in this ultimately futile care. It got me wondering if this is universal--What is your general approach to potentially unethical care?

Let’s assume that the diagnosis is not obviously fatal so perhaps a perorated diverticulitis requiring washout x3 now on tpn or a massive stroke causing airway compromise in a 90+ year old who was 'healthy' prior to the incident. Lets assume they aren't stable for ltach dispo with ongoing hypotension/hypoxia issues, none of which are ever imminently life-threatening. Patient can understand what is going on but isn't able to make decisions.

I have found that the surrogates in these cases take an adversarial posture from the start of the case and usually view any attempt to address goals of care a verbal sparring match. Lawyers are usually mentioned early in the conversation and there is a stubborn refusal to acknowledge lack of progress as a bad sign. It isn't just a single provider as well but literally anyone involved that attempts to approach the patient in any fashion other than to provide limitless care is immediately assumed to be an enemy. I usually find it impossible to formulate any kind of therapeutic relationship because their assumption is that I am acting from a place of malice whenever I mention something bad that happened with their loved one.

Do you involve ethics? Just compartmentalize and inflict ongoing icu care on these poor unfortunately aware souls until they can be sent to ltach? Draw your own lines?

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[greatnt249]

There are a lot of variables involved when it comes to dealing with potentially angry/upset family members. Admittedly, I haven't had many interactions that I would call "adversarial" as you describe, but I find it helpful a lot of times when there seems to be a disconnect between what I am seeing clinically and what the family/surrogates are witnessing is to lead off with asking them their understanding of the current clinical situation, because what you think they understand about what is going on may be vastly different than what they actually do. You see "barely hanging in there even with full support"; they see "still alive and not getting worse." Maybe the only updates they have been getting is from nursing staff to that point that hasn't quite painted a picture of a poor prognosis. Maybe they had prior issues with the healthcare system in the past. Maybe they don't understand why "lack of progress" isn't a good sign. Maybe they interpret continued questions about goals of care as "having an agenda" or "ageism." Maybe they hear "goals of care" and reflexively interpret that to only mean "withdrawal of care." Maybe they're just adversarial by nature and think the only way to get what they want is to have to fight for it. If someone brings up lawyers, that's probably not the point where I would "draw my own lines." Some people are just going to be difficult no matter how much you try to understand where they're coming from. I've also found, interestingly, that the more aggressive personalities tend to come from the family members who were hardly anywhere to be found in the patient's life until the point they wound up in the hospital. We have a patient advocate where I work, and sometimes I've found it useful to get them involved myself to help mediate conversations.

 

[CCM-MD]

In my experience, a lot of the problem comes with physicians trying to be salespeople and trying to "sell" withdrawal of care to these families who eventually don't want to hear it at all. I do my best to teach my residents to not be salespeople but build a relationship with families and attempt to achieve their goals. You have to build a relationship with the patients family, most families want the best for their loved ones, as unreasonable as their goals may be. I have also noticed that physicians are sometimes wrong about predicting which patients are going to do poorly and which ones are going to do well in the ICU. I am sure we can all identify cases that we had thought were not going to survive and did, and patients that we thought were going to do fine and didn't. I try to keep my personal biases aside and try to achieve the goals of the patient's family, if they want to trach and PEG their severely brain injured 90 year old grandmother after understanding the prognosis and options available to them, thats on them.

I also think patient population/geographic location matters a lot. I am currently working in the south and previously worked in the midwest. In general patient families are very nice, though they may often not be well educated. When I worked in NYC, I was more likely to encounter entitled and rude families, but they were in general more educated.

 

[chessknt]

so what I am hearing is just compartmentalize and move on which has been the approach I see most commonly employed.

Part of the reason I made this thread is because I do wonder if we are being derelict in our duties to our patients who have to actually undergo Ongoing care and can’t tell us to stop. If a family is delusional in their belief of recovery (eg a miracle will happen) and this is a clear diagnosis without much wiggle room (like a cervical fracture or sah with catastrophic damage) and want to trach/peg a 90 year old ‘aware’ but dismissive of the poor prognosis we just have to accept this? What if there is clear expression in the past by the patient to not want to pursue prolonged life support but no formal documentation now making it ethically concerning to ignore this? No alternative options used by others? Maybe there are no other options but figured I’d at least do a reality check to make sure this is how everyone else proceeds in these thankfully rare scenarios.

 

[greatnt249]

If the family is truly dismissive of a poor prognosis, I would ask myself how we got to this point where we have such drastically different viewpoints looking at the same patient and try to figure out what it is that they're not understanding about what is going on. I'm not saying this to be patronizing or as if you're incapable of having these conversations. It's just, in my experience, usually there's an identifiable reason for the disconnect if you go looking deep enough. Basically you're just trying to look for something, anything, to work with to establish a relationship and indicate that you're on their side and also are trying to look out for everyone's best interests (within reason). Not "acting as salespeople" above is a good analogy.

Unfortunately, some people are just completely unreasonable no matter how hard you try to find out why, and they are the most frustrating. That's why I had mentioned the idea of if you have something like a patient advocate where you work, it might be useful to get them involved just to have a third party hear out concerns. Another thing that comes to mind and somewhat relates back to "not being salespeople" is how soon to establish the idea of goals of care. We all hear talk about futile end-of-life care, but to me that doesn't mean from the day of admission we have to decide that further escalation of care is futile. If a prognosis isn't looking good, I'll often tell the family what we know in the moment, what I'm worried about not going well and what would need to happen at the point things don't go well, and "read the room" as to how approachable they are to addressing goals of care. If I think they might push back on the idea of not escalating care further, I tell them to think about it, talk to loved ones, whatever they need to do, but not to feel like they need to make a decision right then and there. My impression is that pushback from families is given because they might perceive that they are being forced to make an immediate major decision.

As for being "derelict in duties" to patients who can't tell us to stop, the unfortunate reality is that this is why it's important to pick a power of attorney who you know and trust will look out for your best interests. You make mention of "clear expression in past to not pursue prolonged life support" but no formal documentation, how would you possibly verify this short of the POA telling you "yeah these were his/her wishes but I choose not to follow that"? If someone actually told me that, you can bet that not only would I be 1) demanding proof that they are actually the POA, but also that 2) ethics and potentially even legal would be made aware of the situation as well.

 

[chessknt]

If the family is truly dismissive of a poor prognosis, I would ask myself how we got to this point where we have such drastically different viewpoints looking at the same patient and try to figure out what it is that they're not understanding about what is going on. I'm not saying this to be patronizing or as if you're incapable of having these conversations. It's just, in my experience, usually there's an identifiable reason for the disconnect if you go looking deep enough. Basically you're just trying to look for something, anything, to work with to establish a relationship and indicate that you're on their side and also are trying to look out for everyone's best interests (within reason). Not "acting as salespeople" above is a good analogy.

Unfortunately, some people are just completely unreasonable no matter how hard you try to find out why, and they are the most frustrating. That's why I had mentioned the idea of if you have something like a patient advocate where you work, it might be useful to get them involved just to have a third party hear out concerns. Another thing that comes to mind and somewhat relates back to "not being salespeople" is how soon to establish the idea of goals of care. We all hear talk about futile end-of-life care, but to me that doesn't mean from the day of admission we have to decide that further escalation of care is futile. If a prognosis isn't looking good, I'll often tell the family what we know in the moment, what I'm worried about not going well and what would need to happen at the point things don't go well, and "read the room" as to how approachable they are to addressing goals of care. If I think they might push back on the idea of not escalating care further, I tell them to think about it, talk to loved ones, whatever they need to do, but not to feel like they need to make a decision right then and there. My impression is that pushback from families is given because they might perceive that they are being forced to make an immediate major decision.

As for being "derelict in duties" to patients who can't tell us to stop, the unfortunate reality is that this is why it's important to pick a power of attorney who you know and trust will look out for your best interests. You make mention of "clear expression in past to not pursue prolonged life support" but no formal documentation, how would you possibly verify this short of the POA telling you "yeah these were his/her wishes but I choose not to follow that"? If someone actually told me that, you can bet that not only would I be 1) demanding proof that they are actually the POA, but also that 2) ethics and potentially even legal would be made aware of the situation as well.

To answer your last part--I had one of these cases recently and had the POA tell me on my initial encounter that the patient wouldn't want to pursue (and this was her own words) "something with a less than 5% chance of success" or to require "prolonged life support" in one breath and then in the next tell me that the severe SAH with high cervical injury quad 85 year old is to be full code because she had a friend who had "the same diagnosis" and that her dad 'was a fighter' and his brothers lived to be >100 and recovered from serious illness late in their lives with no problem and he would never want to give up etc etc. When I approached the idea that not all injuries were the same and her friend was younger etc I was met with immediate hostility and accused of wanting to give up and that would not be acceptable and her sister who is a lawyer would be deeply involved etc etc. When I tried to pivot to re-focus on the previously stated goals not being compatible with trach/peg/full code I got the same response. I roped in palliative care who were promptly told to not be involved in his care in the future.

There was nothing written down beyond my own documentation of our conversation and he ultimately ended up with trach/peg and enough awareness to make me really uncomfortable with the entire thing.


As for the first part I am referencing delusional level belief as the problem. This isn't a communication or caring issue or me trying to force a timeline--it is willful disbelief to an extreme where refusal to accept reality has occurred and I have serious concerns about the POA's capacity to function as a true surrogate. I have encountered this about 5 times over the past year with COVID etc.

 

[SurfingDoctor]

I found pondering on the “ethics” of care... just leads to burnout.

We consult the Ethics Service (and Legal) left and right on the neurologically devastated children like once a week. I haven’t found it has really solved anything but increase the number of “debriefings” led by the employer designated psychologist.

The real answer to all of this is a removal of insurance covering futile care. Then if the family of grandpa Joe or lil Jimmy hooked up to machines, they can pay for it out of pocket. You’d see them change all their tunes real quick.

 

[CCM-MD]

I found pondering on the “ethics” of care... just leads to burnout.

We consult the Ethics Service (and Legal) left and right on the neurologically devastated children like once a week. I haven’t found it has really solved anything but increase the number of “debriefings” led by the employer designated psychologist.

The real answer to all of this is a removal of insurance covering futile care. Then if the family of grandpa Joe or lil Jimmy hooked up to machines, they can pay for it out of pocket. You’d see them change all their tunes real quick.

How many members of the Ethics Committee does it take to change a lightbulb? None. The Ethics Committee can't change anything.

Ethics is pretty universally useless.

 

[greatnt249]

As for the first part I am referencing delusional level belief as the problem. This isn't a communication or caring issue or me trying to force a timeline--it is willful disbelief to an extreme where refusal to accept reality has occurred and I have serious concerns about the POA's capacity to function as a true surrogate. I have encountered this about 5 times over the past year with COVID etc.

Yeah, those are the awful ones, and hopefully they're few and far between, but that doesn't take away any of the total soul-suck when you get one of those. There seems to be an inverse relationship between level of delusion and closeness of relationship with the patient; it's always the long-lost relative who shows up out of nowhere who starts creating chaos.

 

[FutureInternist]

THIS is why my wife is not my POA.

She would NEVER let then pull the plug... and we both know it.

In Residency, I actually had to have her as POA, but told her that if attending A said to pull the plug, then do it.
Now I got my best friend (IM doc) as my POA, and we are on the same page 🤞

 

[Siggy]

In my experience, a lot of the problem comes with physicians trying to be salespeople and trying to "sell" withdrawal of care to these families who eventually don't want to hear it at all. I do my best to teach my residents to not be salespeople but build a relationship with families and attempt to achieve their goals. You have to build a relationship with the patients family, most families want the best for their loved ones, as unreasonable as their goals may be. I have also noticed that physicians are sometimes wrong about predicting which patients are going to do poorly and which ones are going to do well in the ICU. I am sure we can all identify cases that we had thought were not going to survive and did, and patients that we thought were going to do fine and didn't. I try to keep my personal biases aside and try to achieve the goals of the patient's family, if they want to trach and PEG their severely brain injured 90 year old grandmother after understanding the prognosis and options available to them, thats on them.

I also think patient population/geographic location matters a lot. I am currently working in the south and previously worked in the midwest. In general patient families are very nice, though they may often not be well educated. When I worked in NYC, I was more likely to encounter entitled and rude families, but they were in general more educated.

This!

The only thing I try to sell on goals of care conversations is that we're trying to follow the patient's wishes for their care. The family member isn't the one pulling the plug, the patient is... and the family members are just advocating for their wishes.

In the same vein, I "sell" that palliative care/hospice is about making the patient comfortable. It's a change in the goal posts, but we still take care of the patient, just with the goal now being comfort.

...and you know what... if family "wants everything done" for the massive ICH patient or the post cardiac arrest patient with clear anoxic injury on CT? It doesn't take much time to consult for trach/peg/LTAC and it's some pretty easy 99291s. Similarly, if a family wants more time to make the decision... fine. no skin off my back. I have the same spiel for all cardiac arrest patients. "I don't think the patient will do well because of X, Y, Z. Guidelines state not to guess how the patient is going to do until 72 hours after the cardiac arrest (or being rewarmed if patient was chilled). I hope he proves me wrong, but if he doesn't, use the next 72 hours to discuss what his wishes would be."

My job isn't to sell the family on anything besides getting information and for them to advocate for the patient. I can't advocate for the patient's wishes... I've known them for all of an hour.

 

[Fart Daddy Smooth]

As for the first part I am referencing delusional level belief as the problem. This isn't a communication or caring issue or me trying to force a timeline--it is willful disbelief to an extreme where refusal to accept reality has occurred and I have serious concerns about the POA's capacity to function as a true surrogate. I have encountered this about 5 times over the past year with COVID etc.

This is it, I worked in one of the biggest LTACHs in the U.S. so I talked to many families of patients who were functionally vegetative but could still do short weaning trials. The common refrain was acknowledgement of the long odds, but the firm belief that their loved one was the 1/1000000 to make a recovery. So they’d languish for months and sometimes years before succumbing to decubitus ulcers/Pna/uti.

 

[IRattending2021]

To answer your last part--I had one of these cases recently and had the POA tell me on my initial encounter that the patient wouldn't want to pursue (and this was her own words) "something with a less than 5% chance of success" or to require "prolonged life support" in one breath and then in the next tell me that the severe SAH with high cervical injury quad 85 year old is to be full code because she had a friend who had "the same diagnosis" and that her dad 'was a fighter' and his brothers lived to be >100 and recovered from serious illness late in their lives with no problem and he would never want to give up etc etc. When I approached the idea that not all injuries were the same and her friend was younger etc I was met with immediate hostility and accused of wanting to give up and that would not be acceptable and her sister who is a lawyer would be deeply involved etc etc. When I tried to pivot to re-focus on the previously stated goals not being compatible with trach/peg/full code I got the same response. I roped in palliative care who were promptly told to not be involved in his care in the future.

There was nothing written down beyond my own documentation of our conversation and he ultimately ended up with trach/peg and enough awareness to make me really uncomfortable with the entire thing.


As for the first part I am referencing delusional level belief as the problem. This isn't a communication or caring issue or me trying to force a timeline--it is willful disbelief to an extreme where refusal to accept reality has occurred and I have serious concerns about the POA's capacity to function as a true surrogate. I have encountered this about 5 times over the past year with COVID etc.

I feel like sometimes there can be a lot of salesmanship going on in the ICU. Not saying you did that, but from talking to some of my patients, the salesmanship can be very, very pushy.

one of my cirrhotic patient in his 20s with no other medical history was really frustrated because the icu docs keep pushing the whole dnr/dni, no more blood transfusion on him. Appearently they somehow got him/his family to agree to it but the moment his hepatic encephalopathy got better he told me that those were not his wish. His code status got changed pretty quick. Thankfully to some pretty fancy intervention he survived to discharge even though i didn’t think he was gonna make it through the first night.

 

[blue.jay]

The real answer to all of this is a removal of insurance covering futile care. Then if the family of grandpa Joe or lil Jimmy hooked up to machines, they can pay for it out of pocket. You’d see them change all their tunes real quick.

This needs to be done. Regardless of communication issues and bias; on a universal level futile care is putting lot of stress on resources. In some decades there are going to lot of elderly people with very few young working population to support medicare. Justice and allocation of resources for everyone (which impacts survival and quality of life) should be a priority though it's not the job of a single physician. As a physician we can only be a patient advocate. All these ethical dilemmas only leads to physician burnout in the ICU.

 

[chessknt]

This needs to be done. Regardless of communication issues and bias; on a universal level futile care is putting lot of stress on resources. In some decades there are going to lot of elderly people with very few young working population to support medicare. Justice and allocation of resources for everyone (which impacts survival and quality of life) should be a priority though it's not the job of a single physician. As a physician we can only be a patient advocate. All these ethical dilemmas only leads to physician burnout in the ICU.

Yep. The patient that spurred this post is still in the ICU hospital day 30+ now. Needing too much care for LTAC with poor secretion clearance requiring rescue maneuvers at least daily, intermittently hypotensive etc. Hospital is full and boarding ICU patients in the ER for the past week yet this 90 year old is snug in bed delirious as F, trach/peg. Family has a lawyer visit every few days to actively discourage any further goals of care discussion. Palliative care signed off shortly after consult after being fired by the family.

 

[SurfingDoctor]

Yep. The patient that spurred this post is still in the ICU hospital day 30+ now. Needing too much care for LTAC with poor secretion clearance requiring rescue maneuvers at least daily, intermittently hypotensive etc. Hospital is full and boarding ICU patients in the ER for the past week yet this 90 year old is snug in bed delirious as F, trach/peg. Family has a lawyer visit every few days to actively discourage any further goals of care discussion. Palliative care signed off shortly after consult after being fired by the family.

See in cases like this, there should be a mechanism that requires home health. Actually from an insurance standpoint, it’s far more cost effective to provide Telehealth with a provider in contact with a home health nurse than take up an ICU. Granted finding home health nursing can be tricky, but barring that, if you want grandpa Joe to be alive, you’re gonna have to get in with some elbow grease and take care of him at home, or split the difference in costs. Either or, no third option.

It is interesting though that after 100,000 years of dying of old age (or any terminal disease for than matter) at home being completely normal, it only took 100 years for it to be considered abnormal. I blame the Internet (just cause it’s always my scape goat).

I think it’s always reasonable to put limitations on care though. Like grandpa Joe can get 10 mcg/min of Norepinephrine as a buffer and if his body gives up, well there it is.

 

[blue.jay]

See in cases like this, there should be a mechanism that requires home health. Actually from an insurance standpoint, it’s far more cost effective to provide Telehealth with a provider in contact with a home health nurse than take up an ICU. Granted finding home health nursing can be tricky, but barring that, if you want grandpa Joe to be alive, you’re gonna have to get in with some elbow grease and take care of him at home, or split the difference in costs. Either or, no third option.

It is interesting though that after 100,000 years of dying of old age (or any terminal disease for than matter) at home being completely normal, it only took 100 years for it to be considered abnormal. I blame the Internet (just cause it’s always my scape goat).

I think it’s always reasonable to put limitations on care though. Like grandpa Joe can get 10 mcg/min of Norepinephrine as a buffer and if his body gives up, well there it is.

Sometimes I feel it's just pure selfishness. Can't you look back and realize that you've lived 90 years which is more than average adult lifespan (even in rich countries). I'll feel back for a kid with terminal illness or young adult starting a family in ICU under such circumstances. These issues just make my blood boil, wasting human resources, dollars, taking up a bed for what? This guy is going to die in few days (any ways) and even if he survives his quality of life will be so miserable he will wish he died; but it's the family which is making these decisions.

I wonder if there are other reasons why family wants these elderly ppl alive, to get their social security paycheck ? Or do they truly unconditionally love their mom/dad/grandpa/grandma ?

 

[SurfingDoctor]

Sometimes I feel it's just pure selfishness. Can't you look back and realize that you've lived 90 years which is more than average adult lifespan (even in rich countries). I'll feel back for a kid with terminal illness or young adult starting a family in ICU under such circumstances. These issues just make my blood boil, wasting human resources, dollars, taking up a bed for what? This guy is going to die in few days (any ways) and even if he survives his quality of life will be so miserable he will wish he died; but it's the family which is making these decisions.

I wonder if there are other reasons why family wants these elderly ppl alive, to get their social security paycheck ? Or do they truly unconditionally love their mom/dad/grandpa/grandma ?

QOL is very hard to judge and honestly I don’t typically consider it. I mean, I don’t live their life so how would I know what they consider “quality”. Most studies in the topic have the families stating the same point (at least in pediatrics). And the resources, well, for better or worse, we don’t live in a resource limited society, so that’s a tough sell. Now expenditures, sure. I mean, 50% of all healthcare expenditures are spent on only 5% of patients. Then it becomes a societal ROI, but that is a system issue and one that so far the system hasn’t felt like addressing. I suspect that is because the US system is more privatized and therefore, if there’s a dollar to be made in keeping near dead people alive longer, then there will be a way for the system to monetize it to support it and avoid in have to dealing with the perceived right or wrong. That’s just a hunch.

To your other points, some people just have a hard time letting go. Like real hard. I have seen some weird s—t. People taking their dead child home and turning down the thermostat to like 50 degrees to try to preserve the body, taking a dead body to a park to spend the day. Grieving can be very challenging for some.

Either way, I think physicians perseverating on it only leads to their own agony.

 

[Radetzky]

Out of interest, what would happen in the US system if you, say, refused to provide ICU services to a patient you deemed to be inappropriate? Does this ever happen? I ask because this is a daily occurrence in the system that I work in.

 

[chessknt]

Out of interest, what would happen in the US system if you, say, refused to provide ICU services to a patient you deemed to be inappropriate? Does this ever happen? I ask because this is a daily occurrence in the system that I work in.

Several things at different times. Immediately what would happen is whoever was trying to transfer the patient to you would transfer the patient to a different hospital and you would probably be reported. Next there may or may not be a malpractice lawsuit filed for abandonment. Third you would have to answer to someone in medical staff. Last you might have to answer to the medical board of your state.

 

[chessknt]

QOL is very hard to judge and honestly I don’t typically consider it. I mean, I don’t live their life so how would I know what they consider “quality”. Most studies in the topic have the families stating the same point (at least in pediatrics). And the resources, well, for better or worse, we don’t live in a resource limited society, so that’s a tough sell. Now expenditures, sure. I mean, 50% of all healthcare expenditures are spent on only 5% of patients. Then it becomes a societal ROI, but that is a system issue and one that so far the system hasn’t felt like addressing. I suspect that is because the US system is more privatized and therefore, if there’s a dollar to be made in keeping near dead people alive longer, then there will be a way for the system to monetize it to support it and avoid in have to dealing with the perceived right or wrong. That’s just a hunch.

To your other points, some people just have a hard time letting go. Like real hard. I have seen some weird s—t. People taking their dead child home and turning down the thermostat to like 50 degrees to try to preserve the body, taking a dead body to a park to spend the day. Grieving can be very challenging for some.

Either way, I think physicians perseverating on it only leads to their own agony.

I don't think it is that hard to judge at all once you get to the edge cases. If someone can't meaningfully interact with the world (massive stroke or head trauma, vegetative, so debilitated from an abdominal catastrophe and elderly they would never be expected to rehab) they have no quality of life by any definition. They would have quantity of life.

You can't take a dead body home in the USA to my knowledge outside of some specific religious ceremonies and even then I imagine a church is involved....

I agree thinking about it leads to distress but at the end of the day we are the ones directing ongoing care and all the discomforts that come with it to someone who can't tell us to stop. It strikes me as a shallow argument that you are only following orders and thus couldn't do anything but it ultimately ends up feeling like that because there does not seem to be anyone deviating from that practice and thus it is 'the standard of care' to which we are all held.

 

[SurfingDoctor]

I don't think it is that hard to judge at all once you get to the edge cases. If someone can't meaningfully interact with the world (massive stroke or head trauma, vegetative, so debilitated from an abdominal catastrophe and elderly they would never be expected to rehab) they have no quality of life by any definition. They would have quantity of life.

You can't take a dead body home in the USA to my knowledge outside of some specific religious ceremonies and even then I imagine a church is involved....

I agree thinking about it leads to distress but at the end of the day we are the ones directing ongoing care and all the discomforts that come with it to someone who can't tell us to stop. It strikes me as a shallow argument that you are only following orders and thus couldn't do anything but it ultimately ends up feeling like that because there does not seem to be anyone deviating from that practice and thus it is 'the standard of care' to which we are all held.

Except that's your belief. That doesn't mean that's the family's belief. That's the rub.

To your second point, that's absolutely wrong and again based on your belief, except that belief is legally incorrect. When someone dies, the body is released to the family (most families opt however to release to a funeral home... ie they consent to it). States may vary, but generally speaking, a family can take the body home and keep it there till it is buried or cremated. I have literally seen it happen on numerous occasions. Look it up, its probably important to know your states rules if you pronounce people dead.

 

[SurfingDoctor]

Out of interest, what would happen in the US system if you, say, refused to provide ICU services to a patient you deemed to be inappropriate? Does this ever happen? I ask because this is a daily occurrence in the system that I work in.

It happens. There are legal loopholes and state mandates that can protect you (or not... ie, you need to talk to your hospital's legal department before you pursue that course). I have had several colleagues unilaterally withdraw on pediatric patients. I guess to their personal benefit, because the family didn't see the benefit. Most end up in court, though I've never seen a successful malpractice suit to date. Some specific cases have also lead to legal changes at the state-level that bar that from happening.

One of the reasons, that brain death isn't a legal definition of death in New Jersey if the family refuses the diagnosis on the grounds of "insert whatever reason... but say religion".

A legal quirk means you can be dead in New York but alive in New Jersey

“You’d think who’s alive and who’s dead would be one of the few questions on which all of American society could have clarity and consistency on.”

qz.com

 

[chessknt]

Except that's your belief. That doesn't mean that's the family's belief. That's the rub.

To your second point, that's absolutely wrong and again based on your belief, except that belief is legally incorrect. When someone dies, the body is released to the family (most families opt however to release to a funeral home... ie they consent to it). States may vary, but generally speaking, a family can take the body home and keep it there till it is buried or cremated. I have literally seen it happen on numerous occasions. Look it up, its probably important to know your states rules if you pronounce people dead. Hospitals have been sued for not releasing bodies properly.

See I don't understand how there can be disagreement on that. It is delusional to think that inability to interact with the world represents quality in any form. Families might lie about existing in a vegetative state as being OK in order to justify ongoing care for some reason but that doesnt make it meet the definition of quality.

For the second point you are right which is astonishing, never seen it. I would add the caveat that my responsibility to a patient ends at death and the laws about what happens to bodies are fun to know about but ultimately not part of my job.

 

[SurfingDoctor]

See I don't understand how there can be disagreement on that. It is delusional to think that inability to interact with the world represents quality in any form. Families might lie about existing in a vegetative state as being OK in order to justify ongoing care for some reason but that doesnt make it true.

For the second point you are right which is astonishing, never seen it. I would add the caveat that my responsibility to a patient ends at death and the laws about what happens to bodies are fun to know about but ultimately not part of my job.

Your perception doesn't make it a reality for others though. I get that you don't get that though and its probably not worth discussing further. However, no one is going to stop you from charging that hill...

 

[chessknt]

Your perception doesn't make it a reality for others though. I get that you don't get that though and its probably not worth discussing further. However, no one is going to stop you from charging that hill...

That level of snark needed here? Did I read the wrong forum and is this SPF now?

It isn't just my 'perception.' There are people who actually try to tackle a definition on this Definition, Measures, Applications, & Facts as an overview with surveys addressing it from the patient's perception. Vegetative state is typically where one end of the spectrum is since people in that would score 0s. I get there is granularity you can't capture with these tools but it seems like you essentially have no floor by just embracing that there is no difference between quality/quantity and that we can't find a scenario where it would be a clear case.

 

[IRattending2021]

That level of snark needed here? Did I read the wrong forum and is this SPF now?

It isn't just my 'perception.' There are people who actually try to tackle a definition on this Definition, Measures, Applications, & Facts as an overview with surveys addressing it from the patient's perception. Vegetative state is typically where one end of the spectrum is since people in that would score 0s. I get there is granularity you can't capture with these tools but it seems like you essentially have no floor by just embracing that there is no difference between quality/quantity and that we can't find a scenario where it would be a clear case.

Ok this is going to be really controversial. One of my biggest fear is locked in syndrome and my personal wish is to have a TV stick in front of me while trached and pegged so I can at least see the world. Just because someone cannot interact with the world doesn’t necessarily mean they want to stop support.
Now if I for sure no longer able to cogitate (loss of neocortex) then I rather be gone, but everyone’s got their own wish. I think we shouldn’t apply our wishes over patient’s.

 

[Radetzky]

Forget about trying to estimate quality of life. Icu care is painful and distressing. The question is is the prospect of recovery back to the kind of quality of life they want, whatever that may be, high enough to justify the suffering we inflict. Most of the time in these situations the answer is no.

 

[CCM-MD]

See I don't understand how there can be disagreement on that. It is delusional to think that inability to interact with the world represents quality in any form. Families might lie about existing in a vegetative state as being OK in order to justify ongoing care for some reason but that doesnt make it meet the definition of quality.

For the second point you are right which is astonishing, never seen it. I would add the caveat that my responsibility to a patient ends at death and the laws about what happens to bodies are fun to know about but ultimately not part of my job.

Quality of life is subjective. There can definitely be disagreement on that.

 

[CCM-MD]

Forget about trying to estimate quality of life. Icu care is painful and distressing. The question is is the prospect of recovery back to the kind of quality of life they want, whatever that may be, high enough to justify the suffering we inflict. Most of the time in these situations the answer is no.

Again, that is subjective. While you might believe it is “not worth” going through painful and distressing ICU care, for a minuscule prospect of recovery, not everyone feels that way.

When approaching end of life situations as a physician it is critical to not let personal opinions on what decision should be made get in the way.

 

[SurfingDoctor]

That level of snark needed here? Did I read the wrong forum and is this SPF now?

It isn't just my 'perception.' There are people who actually try to tackle a definition on this Definition, Measures, Applications, & Facts as an overview with surveys addressing it from the patient's perception. Vegetative state is typically where one end of the spectrum is since people in that would score 0s. I get there is granularity you can't capture with these tools but it seems like you essentially have no floor by just embracing that there is no difference between quality/quantity and that we can't find a scenario where it would be a clear case.

Sorry, I didn’t mean to sound snarky. It’s pretty evident to me however that this conversation is... futile.

 

[Radetzky]

Again, that is subjective. While you might believe it is “not worth” going through painful and distressing ICU care, for a minuscule prospect of recovery, not everyone feels that way.

When approaching end of life situations as a physician it is critical to not let personal opinions on what decision should be made get in the way.

I see you point. However, I think that if a patient or family expresses what kind of life they would like to return to and our medical opinion is, we do not have a good chance of achieving that, then it is absolutely appropriate to let your personal opinion guide this.

 

[CCM-MD]

I see you point. However, I think that if a patient or family expresses what kind of life they would like to return to and our medical opinion is, we do not have a good chance of achieving that, then it is absolutely appropriate to let your personal opinion guide this.

I think we've found exactly where we disagree. Your view is very paternalistic in allowing a physician's personal opinion of a "good chance" supersede a patient's choice. A "good chance" is very subjective. I see patients almost on a daily basis that don't have a good chance of survival but some do well. We are not gods and don't have the capability of predicting what a patient's outcome is going to be with absolute certainty. I am sure you and I have both seen patients that the entire treatment team has not expected to have a favorable outcome, but have surprised us by doing well.

Our role as a physicians is to present the facts and discuss options with patients. If there's a bad chance of achieving a patient's goal but they or their surrogate decision makers still want to proceed, then that is their prerogative. We are their guides, but the ultimate choice remains theirs.

 

[Siggy]

Several things at different times. Immediately what would happen is whoever was trying to transfer the patient to you would transfer the patient to a different hospital and you would probably be reported. Next there may or may not be a malpractice lawsuit filed for abandonment. Third you would have to answer to someone in medical staff. Last you might have to answer to the medical board of your state.

Meanwhile the ethics board at your hospital will completely reiterate and back up the fact that you don't have to provide futile care. Of course they're like the nurses who question whether a patient really needs to come to the ICU... as in no where to be found when being questioned by peer review, the medical board, or in a deposition.

 

[chessknt]

I think we've found exactly where we disagree. Your view is very paternalistic in allowing a physician's personal opinion of a "good chance" supersede a patient's choice. A "good chance" is very subjective. I see patients almost on a daily basis that don't have a good chance of survival but some do well. We are not gods and don't have the capability of predicting what a patient's outcome is going to be with absolute certainty. I am sure you and I have both seen patients that the entire treatment team has not expected to have a favorable outcome, but have surprised us by doing well.

Our role as a physicians is to present the facts and discuss options with patients. If there's a bad chance of achieving a patient's goal but they or their surrogate decision makers still want to proceed, then that is their prerogative. We are their guides, but the ultimate choice remains theirs.

I don't intend for this to be argumentative or nitpicky but consider the following scenario:

93 year old, bedbound after fall with head trauma with trach/peg, never done anything since then except breathe and withdraw to pain for the past 2 months after discharge. Now comes in with hemodynamic instability, has massive PE from presumed DVT, full code, has cardiac arrest in the ER. Cleared for anticoagulation again by neuro/neurosurgery. Do we get the ECMO circuit out because 'you and I have both seen patients that the entire treatment team has not expected to have a favorable outcome, but have surprised us by doing well'? Just completely ignore clinical reality for the unicorn belief of a good outcome?

I don't think anyone would offer ECMO in that scenario but if it were a 40 year old that is a completely different scenario--why?

 

[Radetzky]

I think we've found exactly where we disagree. Your view is very paternalistic in allowing a physician's personal opinion of a "good chance" supersede a patient's choice. A "good chance" is very subjective. I see patients almost on a daily basis that don't have a good chance of survival but some do well. We are not gods and don't have the capability of predicting what a patient's outcome is going to be with absolute certainty. I am sure you and I have both seen patients that the entire treatment team has not expected to have a favorable outcome, but have surprised us by doing well.

Our role as a physicians is to present the facts and discuss options with patients. If there's a bad chance of achieving a patient's goal but they or their surrogate decision makers still want to proceed, then that is their prerogative. We are their guides, but the ultimate choice remains theirs.

I definitely respect everyone’s counter opinions, interesting discussion for sure. And I realise I practice in a different system.

However i don’t think one can focus on the handful of cases that ‘surprised people’ and ignore the more important denominator, which is the large majority of patients that are harmed in the process. I suppose we disagree in how we regard that denominator and how much harm we’re doing there. I agree that once we present options to patient we should respect their wishes, but if we think something is not going to achieve recovery in the way the patient wants we shouldn’t offer it, the same way we wouldn’t offer antibiotics to something we think is a viral infection.

In uncertain cases I think it’s also useful to come to an agreement beforehand to try something for a limited period of time, and explain that if, so for example in 2 days (or whatever, as long as it’s a definitive point), it hasn’t made any difference then that’s nature’s way of saying it’s not going to work and we should stop. I’ve found people get on board with this but again, the cultural environment I practice in is different.

 

[turkeyjerky]

I definitely respect everyone’s counter opinions, interesting discussion for sure. And I realise I practice in a different system.

However i don’t think one can focus on the handful of cases that ‘surprised people’ and ignore the more important denominator, which is the large majority of patients that are harmed in the process. I suppose we disagree in how we regard that denominator and how much harm we’re doing there. I agree that once we present options to patient we should respect their wishes, but if we think something is not going to achieve recovery in the way the patient wants we shouldn’t offer it, the same way we wouldn’t offer antibiotics to something we think is a viral infection.

In uncertain cases I think it’s also useful to come to an agreement beforehand to try something for a limited period of time, and explain that if, so for example in 2 days (or whatever, as long as it’s a definitive point), it hasn’t made any difference then that’s nature’s way of saying it’s not going to work and we should stop. I’ve found people get on board with this but again, the cultural environment I practice in is different.

Also, IMO many (all?) of the cases in which people cite unexpectedly good outcomes, the poor prognosis is related to the severity of the acute condition, rather than the patient’s underlying comorbidities or functional status.

 

[BicepsTriceps]

I found pondering on the “ethics” of care... just leads to burnout.

We consult the Ethics Service (and Legal) left and right on the neurologically devastated children like once a week. I haven’t found it has really solved anything but increase the number of “debriefings” led by the employer designated psychologist.

The real answer to all of this is a removal of insurance covering futile care. Then if the family of grandpa Joe or lil Jimmy hooked up to machines, they can pay for it out of pocket. You’d see them change all their tunes real quick.

This 👆

Ridiculous amount of cost is wasted on elderly patients who have no functional capacity and no quality of life.
Medicare for all is nice in theory but it will never work with the status quo.

If we can make providing care only to patients with functional prognosis a thing we would save tons of money.
The process can be streamlined and refined as we go (2-3 physicians evaluation ... etc).

You're not unethical if you refuse to rehab this cachectic 90 year old with his 5th admission in 3 months due to another fall and decreased oral intake.
People are not supposed to live for ever. We should normalize telling family members that their 90 year old grandma Karen is approaching her end of life and it's time to comfort her at home until she meets her creator.

You need to protect physicians from these bull**** lawsuits as well. I can't have my judgement clouded by fear of a frivolous lawsuit.

I love ICU but huge part of me doesn't want to do it as I don't want to physically assault elderly people when they're dying (Intubation, lines, tubes...).

 

[CCM-MD]

@chessknt @economycian @turkeyjerky

You guys make good points. And I obviously agree we shouldn't be putting someone like that on ECMO.

 

[nikolaite]

I can’t help but be reminded of that book The House of God while reading this thread.

It looks like the main problem here is due to the disconnect between cost and care. If a patient’s family actually had to address the cost, they would likely decline ICU or other invasive measures for their beloved elderly. The major issue with even starting down that road is the way the information on hospital pricing for service is hoarded like gold. Many colleagues tell me that when they encounter self-pay individuals in the ER or PCU asking for pricing, they don’t even know who to talk to help. One told me that social work went to the billing office and printed off the entire code/price database for a patient, but that she couldn’t even help the patient use the 50-ish pages to figure out what the care was costing. Other providers view patients or family inimically asking about cost in order to make care decisions.

I don’t think there is a current infrastructure to deal with the problem at hand...so it will likely persist...with medicos facing the burnout and personal pain that comes with seeing patients suffer on futilely in the ICU.

 

[SurfingDoctor]

I don't intend for this to be argumentative or nitpicky but consider the following scenario:

93 year old, bedbound after fall with head trauma with trach/peg, never done anything since then except breathe and withdraw to pain for the past 2 months after discharge. Now comes in with hemodynamic instability, has massive PE from presumed DVT, full code, has cardiac arrest in the ER. Cleared for anticoagulation again by neuro/neurosurgery. Do we get the ECMO circuit out because 'you and I have both seen patients that the entire treatment team has not expected to have a favorable outcome, but have surprised us by doing well'? Just completely ignore clinical reality for the unicorn belief of a good outcome?

I don't think anyone would offer ECMO in that scenario but if it were a 40 year old that is a completely different scenario--why?

93 year old on ECMO? Hard pass.

Incidental, I had a colleague who used ECMO for ECPR on a 14 year old renal transplant patient who arrested on the floor from a PE. That, amongst other cases, has definitely proven to me that ECMO for ECPR is a terrible idea.

 

[chessknt]

93 year old on ECMO? Hard pass.

Incidental, I had a colleague who used ECMO for ECPR on a 14 year old renal transplant patient who arrested on the floor from a PE. That, amongst other cases, has definitely proven to me that ECMO for ECPR is a terrible idea.

Ecpr in general is rough except for the few times when it seems to actually do something useful. Resource costs outweigh benefits by far imo.

We all agree 90 year olds on ecmo is insane but how did that become a universally agreed line in the sand for life support in the elderly? If the family says do everything why doesn’t that include ecmo?

 

[SurfingDoctor]

Ecpr in general is rough except for the few times when it seems to actually do something useful. Resource costs outweigh benefits by far imo.

We all agree 90 year olds on ecmo is insane but how did that become a universally agreed line in the sand for life support in the elderly? If the family says do everything why doesn’t that include ecmo?

In my experience and in general... there is a vast difference between taking something away and not having it in the first place.

I think ECMO becomes an incredibly sticky subject when what you've deemed reversible... ends up not being so. If you think whatever the cause (PE leading to global brain ischemia) isn't reversible, then don't do it in the first place.

I also have memories of a pediatric BMT patient who we put on ECMO. Her lungs never recovered... but we did awaken her sedation enough to say goodbye to her family... I still don't know if that was a good outcome or not. How many of her is worth a good outcome? That's a great question... but one I choose not to think about too much... cause I like Bourbon.

 

[Radetzky]

Does anybody have good experience with ecmo for ecpr? I’ve read wildly conflicting data and not sure what to think about it’s usefulness (or lack).

 

[PTPoeny]

Does anybody have good experience with ecmo for ecpr? I’ve read wildly conflicting data and not sure what to think about it’s usefulness (or lack).

Reasonably good experiences. Mostly post-op hearts.

 

[chessknt]

Reasonably good experiences. Mostly post-op hearts.

Well that isn’t ecpr in the traditional sense then. Ecpr as most understand it is when Ems finds a dead person outside and brings them in to the Er still dead with cpr in progress and instead of calling the code at 20-40 minutes like the good old days they cannulate for ecmo and leave them on it for a tragically long time to see what kind of neurological recovery is going to (not) happen.

 

[Radetzky]

Well that isn’t ecpr in the traditional sense then. Ecpr as most understand it is when Ems finds a dead person outside and brings them in to the Er still dead with cpr in progress and instead of calling the code at 20-40 minutes like the good old days they cannulate for ecmo and leave them on it for a tragically long time to see what kind of neurological recovery is going to (not) happen.

Yeah that’s what I was referring to.

this is the most recent study I’ve seen

Extracorporeal cardiopulmonary resuscitation in out-of-hospital cardiac arrest: a registry study - PubMed

In a population-based registry, 4% of OHCAs were treated with extracorporeal-CPR, which was not associated with increased hospital survival. Early ECMO implantation may improve outcomes. The initial rhythm and ROSC may help select patients for extracorporeal-CPR.

pubmed.ncbi.nlm.nih.gov

Although it seems outcomes may be slightly better if you initiate ecmo prehospital. There are some interesting photos of someone getting cannulated in the louvre.

 

[PTPoeny]

So only OHCA? We consider it ECPR when we cannulate before ROSC for in hospital arrests as well. I'm pretty sure this matches the ELSO definitions and what they use in their outcome data.

Re-reading my original comment, I didn't specify that the kids had arrested before cannulation so I apologize if that was your confusion.

https://www.elso.org/Portals/0/Files/PDF/ELSO%2520Database%2520Definitions%25202018-2-1.pdf&ved=2ahUKEwjXqZu02pPxAhUYFzQIHSUZDbcQFjABegQIBBAG&usg=AOvVaw3of9C_uGFlJ6ohx93KpHwY

Well that isn’t ecpr in the traditional sense then. Ecpr as most understand it is when Ems finds a dead person outside and brings them in to the Er still dead with cpr in progress and instead of calling the code at 20-40 minutes like the good old days they cannulate for ecmo and leave them on it for a tragically long time to see what kind of neurological recovery is going to (not) happen

 

[chessknt]

So only OHCA? We consider it ECPR when we cannulate before ROSC for in hospital arrests as well. I'm pretty sure this matches the ELSO definitions and what they use in their outcome data.

Re-reading my original comment, I didn't specify that the kids had arrested before cannulation so I apologize if that was your confusion.

https://www.elso.org/Portals/0/Files/PDF/ELSO%2520Database%2520Definitions%25202018-2-1.pdf&ved=2ahUKEwjXqZu02pPxAhUYFzQIHSUZDbcQFjABegQIBBAG&usg=AOvVaw3of9C_uGFlJ6ohx93KpHwY

I think the majority of the data for it is related to OOHA in the adult population and how I was taught about it.

 

[chocomorsel]

I suspect this is more of a problem in good old United States of America.