The Power and Peril of the ICU
April 29, 2023 2:39 PM Subscribe
...nearly all of us want medical treatments to extend our lives for as long as possible, until we reach the threshold when the pain and suffering imposed by such treatments exceeds potential future gains in life and the pleasure and joy it would bring. Obviously, the difficult part is knowing when that threshold has been crossed.
"Obviously, the difficult part is knowing when that threshold has been crossed."
Naah. The tricky part is estimating (you never *know*) an appreciable time *before* the threshold. So you can still...
With recent health reversals it's been on my mind lately.
posted by aleph at 3:38 PM on April 29, 2023 [6 favorites]
Naah. The tricky part is estimating (you never *know*) an appreciable time *before* the threshold. So you can still...
With recent health reversals it's been on my mind lately.
posted by aleph at 3:38 PM on April 29, 2023 [6 favorites]
Yeah, I spent three days in the ICU on a ventilator last Thanksgiving weekend. Not COVID. But, super bad infection that shut my whole body down. Ventilator seems to have pressed on a nerve, so one side of my neck is still numb.
But I have family, who looked out for me, and I didn't die. There are three days I thankfully have no memory of, but what the doctors/nurses did worked. But, had it been even more prolonged...
Despite my NOT having any directives, (I still am sure I will live forever, or just drop dead), this shit makes me wonder. Hope I die before my brain gets old.
And props to the article for calling out the nurses. They do all the nasty work. I had two out of about 20 that I had a problem with. They are the best.
posted by Windopaene at 3:55 PM on April 29, 2023 [4 favorites]
But I have family, who looked out for me, and I didn't die. There are three days I thankfully have no memory of, but what the doctors/nurses did worked. But, had it been even more prolonged...
Despite my NOT having any directives, (I still am sure I will live forever, or just drop dead), this shit makes me wonder. Hope I die before my brain gets old.
And props to the article for calling out the nurses. They do all the nasty work. I had two out of about 20 that I had a problem with. They are the best.
posted by Windopaene at 3:55 PM on April 29, 2023 [4 favorites]
"And props to the article for calling out the nurses. They do all the nasty work."
Just spent a week in the Hospital, after M called 911 on me. Nurses were great with few exceptions but the worse jobs seem to be done by the "Nurse Assistant(s)". Though when they weren't available the Nurses stepped in. Obvious place to spend to improve the Nursing situation but a couple of Nurses told me (after I asked about the recent almost-Strike) that they got pay increases but the Number One request of more staff was turned down.
Though they probably meant more Nurses.
posted by aleph at 4:29 PM on April 29, 2023 [4 favorites]
Just spent a week in the Hospital, after M called 911 on me. Nurses were great with few exceptions but the worse jobs seem to be done by the "Nurse Assistant(s)". Though when they weren't available the Nurses stepped in. Obvious place to spend to improve the Nursing situation but a couple of Nurses told me (after I asked about the recent almost-Strike) that they got pay increases but the Number One request of more staff was turned down.
Though they probably meant more Nurses.
posted by aleph at 4:29 PM on April 29, 2023 [4 favorites]
I appreciate you drawing attention to that aleph. That was the one blind spot in the article for me: the people making the ICU run are nurse's aids, respiratory therapists, housecleaning staff. I am a nurse, nurses are great, and there are tons of invisible staff that make hospitals work (admin workers, clerks, dietary workers, lab techs, engineering workers, etc), but the workers most impacted in the last few years in the ICU, and least interviewed/profiled/photographed/elevated/heroized are mostly Black and or immigrants, are paid much less than doctors or nurses, received less PPE, less training in how to use PPE, and often were physically closer to infectious material and particles. Of course CNAs suffer the same moral distress as the ICU docs who write the orders, but have little agency in the workplace.
posted by latkes at 5:48 PM on April 29, 2023 [21 favorites]
posted by latkes at 5:48 PM on April 29, 2023 [21 favorites]
My dad was a textbook case of this. I'm told he had some kind of no extreme measures.. .something, paperwork, I don't know. But he went to the ER, my ever-hopeful mom, in charge of it all, said to save him, and the rest of his life was spent strung out on a ventilator in a "rehab hospital" (didn't work) for 18 months as a vegetable who probably had locked in syndrome until insurance refused to pay $200,000/month to keep him alive any more, forcing Mom to either go broke to keep him alive with no quality of life, or pull the plug. It was a slow nightmare.
I don't think anyone there at the moment really "got" that we were at That Moment of decision, from what it sounds like.
If I get ill while my mom is alive, this may happen to me. I have no one else close by who cares about me and is sure to stay in my life to be proxy. We've had That Conversation about how I don't want to be strung along and she says she gets it now, but it doesn't matter on your wishes or the paperwork compared to a crying relative right there.
posted by jenfullmoon at 6:20 PM on April 29, 2023 [8 favorites]
I don't think anyone there at the moment really "got" that we were at That Moment of decision, from what it sounds like.
If I get ill while my mom is alive, this may happen to me. I have no one else close by who cares about me and is sure to stay in my life to be proxy. We've had That Conversation about how I don't want to be strung along and she says she gets it now, but it doesn't matter on your wishes or the paperwork compared to a crying relative right there.
posted by jenfullmoon at 6:20 PM on April 29, 2023 [8 favorites]
I had a discussion with a Doctor in my last trip to the Hospital. For him, there was a difference between "extreme measures" and a ventilator. He was of the same opinion about "extreme measures" as me but he had different scenarios where the ventilator was a "good thing" as long as it was a short time thing. But I'm afear-d that the "short time" could get tangled up in regulations leaving me stuck with it in some facility for quite a while until somebody's money ran out.
posted by aleph at 6:44 PM on April 29, 2023 [4 favorites]
posted by aleph at 6:44 PM on April 29, 2023 [4 favorites]
I've had many talks with my sister about my advance directives, and even though I know she disapproved of some of them I trust her to act in accordance if the need arises. It's a real comfort
posted by The Underpants Monster at 7:40 PM on April 29, 2023 [3 favorites]
posted by The Underpants Monster at 7:40 PM on April 29, 2023 [3 favorites]
I had one grandparent who died relatively well. One.
so this? — …nearly all of us want medical treatments to extend our lives for as long as possible
No. Not nearly all of us. I think we, as a culture, as a society, would be able to have better conversations, create better options, when we publicly admit and agree that this is NOT what most of us want.
posted by Silvery Fish at 8:01 PM on April 29, 2023 [15 favorites]
so this? — …nearly all of us want medical treatments to extend our lives for as long as possible
No. Not nearly all of us. I think we, as a culture, as a society, would be able to have better conversations, create better options, when we publicly admit and agree that this is NOT what most of us want.
posted by Silvery Fish at 8:01 PM on April 29, 2023 [15 favorites]
There's a big brouhaha in Poland recently over the fact the husband of the Marshal of Sejm (the equivalent of the Speaker of the House) has been in ICU for two years when other people are kicked out for either rehab or hospice after three months max. This is in a single-payer system so the state is paying for keeping him vegetative, a different question of privilege than just people being able to stay alive as long as the money doesn't run out. Which seems its own kind of dystopian...
posted by I claim sanctuary at 10:55 PM on April 29, 2023 [8 favorites]
posted by I claim sanctuary at 10:55 PM on April 29, 2023 [8 favorites]
I also picked up this, and disagreed "…nearly all of us want medical treatments to extend our lives for as long as possible"
I think what he is actually observing is that nearly all of us have at least one close family member that wants medical treatments to extend our lives for as long as possible. By definition, he doesn't know what the patients he is treating want at all.
In the UK, as the article notes, things are somewhat different for various reasons, and I don't think we have long-term acute care hospitals. Most of the time, if there is no realistic prospect of leaving the ICU the hospital will suggest removing ventilation and the family will agree to it, sometimes after a period of disagreement and second opinions, further tests etc. But the court case he describes between a hospital and a family is something that happens here from time to time. The judge's decision will rest on what is in the best interests of the patient, including their previously expressed or implied wishes (in any form). It is a well-established legal principle that it is not always in the patient's best interests to remain alive
posted by plonkee at 1:59 AM on April 30, 2023 [3 favorites]
I think what he is actually observing is that nearly all of us have at least one close family member that wants medical treatments to extend our lives for as long as possible. By definition, he doesn't know what the patients he is treating want at all.
In the UK, as the article notes, things are somewhat different for various reasons, and I don't think we have long-term acute care hospitals. Most of the time, if there is no realistic prospect of leaving the ICU the hospital will suggest removing ventilation and the family will agree to it, sometimes after a period of disagreement and second opinions, further tests etc. But the court case he describes between a hospital and a family is something that happens here from time to time. The judge's decision will rest on what is in the best interests of the patient, including their previously expressed or implied wishes (in any form). It is a well-established legal principle that it is not always in the patient's best interests to remain alive
posted by plonkee at 1:59 AM on April 30, 2023 [3 favorites]
I'm told he had some kind of no extreme measures.. .something, paperwork...
Probably a DNR order.
I’ve always wondered how one actually got a DNR enforced. I mean, I’ve never encountered any way to have a DNR legally and permanently attached to my being in a way that any doctor, EMT, etc. will know (and hopefully obey) my wishes.
posted by Thorzdad at 4:41 AM on April 30, 2023
Probably a DNR order.
I’ve always wondered how one actually got a DNR enforced. I mean, I’ve never encountered any way to have a DNR legally and permanently attached to my being in a way that any doctor, EMT, etc. will know (and hopefully obey) my wishes.
posted by Thorzdad at 4:41 AM on April 30, 2023
I’ve always wondered how one actually got a DNR enforced. I mean, I’ve never encountered any way to have a DNR legally and permanently attached to my being in a way that any doctor, EMT, etc. will know (and hopefully obey) my wishes.
If you are in the US, it is getting better, but it’s not comprehensive. If you are part of a medical care system with the full electronic records portal, every doctor and office in network has access to that… and everyone outside does not.
I wonder if you could create a custom Medical ID pendant for that? Not sure if it would be honored without the set of specific instructions and a signature.
posted by Silvery Fish at 5:56 AM on April 30, 2023
If you are in the US, it is getting better, but it’s not comprehensive. If you are part of a medical care system with the full electronic records portal, every doctor and office in network has access to that… and everyone outside does not.
I wonder if you could create a custom Medical ID pendant for that? Not sure if it would be honored without the set of specific instructions and a signature.
posted by Silvery Fish at 5:56 AM on April 30, 2023
I learned the hard way that medical science has myriad ways of keeping someone "alive" if the family wishes to. This is why everyone, regardless of how old you are, should have a living will, advance medical directive, and a health care proxy with someone you trust will advocate for your wishes when you are unable to. It wasn't great having to be the one to tell the hospital to begin palliative care for my father, but the paperwork made it clear this was what he wanted.
posted by tommasz at 6:02 AM on April 30, 2023 [4 favorites]
posted by tommasz at 6:02 AM on April 30, 2023 [4 favorites]
I see the wisdom in this, I do. It’s complicated for me by the fact that my mother woke up from a coma she was not supposed to wake up from, according to the neurologists. She’s still here, a decade+ later, still peculiar, irascible, and very much awake. Sometimes doctors know more than they say, but other times they know less.
My dad avoided the ICU, but spent more time in hospitals in his last year than anyone enjoys. My conversations with his geriatrician (he was lucky to have one) were really illuminating. He explained to me that hospital care is now mostly provided by inpatient specialists who are most comfortable staying in their lane, and their lane isn’t necessarily end of life conversations. My dad, surrounded by experts, was only really willing to hear the words “hospice” and “palliative care” from him. His journey highlighted for me the importance of trust and time in such conversations. Those things aren’t readily accessible to hospital teams.
posted by eirias at 6:58 AM on April 30, 2023 [4 favorites]
My dad avoided the ICU, but spent more time in hospitals in his last year than anyone enjoys. My conversations with his geriatrician (he was lucky to have one) were really illuminating. He explained to me that hospital care is now mostly provided by inpatient specialists who are most comfortable staying in their lane, and their lane isn’t necessarily end of life conversations. My dad, surrounded by experts, was only really willing to hear the words “hospice” and “palliative care” from him. His journey highlighted for me the importance of trust and time in such conversations. Those things aren’t readily accessible to hospital teams.
posted by eirias at 6:58 AM on April 30, 2023 [4 favorites]
After going through my father's death (which was quick but painful from a "superbug" infection after colon cancer surgery) my remaining family (Mom, brother, and I) had a long conversation about our wishes. We all agreed that we didn't want to be on life support for an extended time. So, when my mom had dementia and went into a care facility, we had a DNR on file and a bright pink POLST (Physicians order for Life Sustaining Treatment) form posted several places in her room. When an aide found her unresponsive one evening, that was it. No drama. My brother and I were comfortable with our decision. She had "left" us months before and we knew what she wanted.
I am a Kaiser patient and have an Advanced Directive on file with them. My brother has a copy and a copy is in my "what to do when I die) book. I want to be as sure as possible that I don't have my life prolonged if I become severely disabled, etc. (PLEASE DON'T TAKE THIS AS APPLYING TO ANYONE OTHER THAN MYSELF). I can't stand the idea of needing constant care or even assistance--I am a crabby loner who has been single all my life and would be really unhappy if I had to go into care for any length of time (it would be torture--I was in a rehab hospital for less than a week after my car accident and it was a nightmare for me). Frankly, I would rather have them err on the side of letting me go to early. As fiercely as I assert my right to not have my life prolonged, I would defend another's right to a life with whatever level of care they need to go on as long as they wish.
My point here is that as uncomfortable as these kinds of conversations and preparations are--it is the very best thing you can do for yourself and your loved ones.
posted by agatha_magatha at 8:43 AM on April 30, 2023 [2 favorites]
I am a Kaiser patient and have an Advanced Directive on file with them. My brother has a copy and a copy is in my "what to do when I die) book. I want to be as sure as possible that I don't have my life prolonged if I become severely disabled, etc. (PLEASE DON'T TAKE THIS AS APPLYING TO ANYONE OTHER THAN MYSELF). I can't stand the idea of needing constant care or even assistance--I am a crabby loner who has been single all my life and would be really unhappy if I had to go into care for any length of time (it would be torture--I was in a rehab hospital for less than a week after my car accident and it was a nightmare for me). Frankly, I would rather have them err on the side of letting me go to early. As fiercely as I assert my right to not have my life prolonged, I would defend another's right to a life with whatever level of care they need to go on as long as they wish.
My point here is that as uncomfortable as these kinds of conversations and preparations are--it is the very best thing you can do for yourself and your loved ones.
posted by agatha_magatha at 8:43 AM on April 30, 2023 [2 favorites]
Very interesting to read the history of ICUs, and how prevalent they are in the United States! There is always something new to learn about how fucked up our system is.
Since I live in the US and I'm young, the conversation I have had with loved ones about my death was - if I die due to gun violence, feel free to make a huge political stink in my honor.
I (nurse) have had a few patients who decided they were ready to die after they had passed some threshold of not being considered competent to make their own medical decisions. So the patient was refusing all treatment, meanwhile they were not on Do Not Resuscitate/Do Not Intubate orders and we couldn't get those orders updated without working with their non-local family, who wasn't really prioritizing the patient and weren't available to talk with us... painful all around.
posted by Emmy Rae at 2:20 PM on April 30, 2023 [3 favorites]
Since I live in the US and I'm young, the conversation I have had with loved ones about my death was - if I die due to gun violence, feel free to make a huge political stink in my honor.
I (nurse) have had a few patients who decided they were ready to die after they had passed some threshold of not being considered competent to make their own medical decisions. So the patient was refusing all treatment, meanwhile they were not on Do Not Resuscitate/Do Not Intubate orders and we couldn't get those orders updated without working with their non-local family, who wasn't really prioritizing the patient and weren't available to talk with us... painful all around.
posted by Emmy Rae at 2:20 PM on April 30, 2023 [3 favorites]
After going through my father's death (which was quick but painful from a "superbug" infection after colon cancer surgery) my remaining family (Mom, brother, and I) had a long conversation about our wishes. We all agreed that we didn't want to be on life support for an extended time. So, when my mom had dementia and went into a care facility, we had a DNR on file and a bright pink POLST (Physicians order for Life Sustaining Treatment) form posted several places in her room. When an aide found her unresponsive one evening, that was it. No drama. My brother and I were comfortable with our decision. She had "left" us months before and we knew what she wanted.
This is an example I suggest everyone follow. Advanced directives are useful in as much as they precipitate/facilitate conversations with the people who will ultimately make decisions for us, but in my experience are rarely referenced by providers. I don't think any of my parents doctors ever glanced at their advanced directives that were scanned into their medical records. I had to keep asking my dad's doctor to find it but it seemed to take a lot of clicks to get to in EPIC. Also if you have a DNR in your medical record, then have surgery, they will remove the DNR and may forget to re-instate it. Or if you have a DNR in your medical record but end up in a facility that doesn't use the same electronic medical record, no one will see it.
And as mentioned in the article, no advanced directive can anticipate every possible outcome. My friend who just died of brain cancer said she wanted 'no tubes' - thinking of feeding tubes and intubation, but no one had mentioned the idea of a rectal catheter delivering medication & hydration. To my mind, such an intervention violated her intent, but her partner disagreed. No way to know since my friend could no longer speak.
In my parents' final years, providers turned first to my parents words - even as it was clear their capacity was waning - and then to me to decide each potential intervention - generally framed with the assumption that they would want that intervention. I was lucky we had had dinner table conversations my whole life where my mom would say things like, "Pull the Plug!". During each of my dad's hospitalizations in his last years he made a point to say he had lived a good life and didn't need to continue on. I understood the intent of their wishes and as a nurse had a lot of knowledge of what that intent might mean in real life - a piece missing for most people asked to make these decisions.
The POLST is like a one page and highly specific advanced directive that doctors DO read and follow, but is initiated once you are within 6 months of death, again, often completed by or at least with a family member. In the US, close and deep social ties with trustworthy people of good judgement is the key to a good death for most.
posted by latkes at 4:35 PM on April 30, 2023 [4 favorites]
This is an example I suggest everyone follow. Advanced directives are useful in as much as they precipitate/facilitate conversations with the people who will ultimately make decisions for us, but in my experience are rarely referenced by providers. I don't think any of my parents doctors ever glanced at their advanced directives that were scanned into their medical records. I had to keep asking my dad's doctor to find it but it seemed to take a lot of clicks to get to in EPIC. Also if you have a DNR in your medical record, then have surgery, they will remove the DNR and may forget to re-instate it. Or if you have a DNR in your medical record but end up in a facility that doesn't use the same electronic medical record, no one will see it.
And as mentioned in the article, no advanced directive can anticipate every possible outcome. My friend who just died of brain cancer said she wanted 'no tubes' - thinking of feeding tubes and intubation, but no one had mentioned the idea of a rectal catheter delivering medication & hydration. To my mind, such an intervention violated her intent, but her partner disagreed. No way to know since my friend could no longer speak.
In my parents' final years, providers turned first to my parents words - even as it was clear their capacity was waning - and then to me to decide each potential intervention - generally framed with the assumption that they would want that intervention. I was lucky we had had dinner table conversations my whole life where my mom would say things like, "Pull the Plug!". During each of my dad's hospitalizations in his last years he made a point to say he had lived a good life and didn't need to continue on. I understood the intent of their wishes and as a nurse had a lot of knowledge of what that intent might mean in real life - a piece missing for most people asked to make these decisions.
The POLST is like a one page and highly specific advanced directive that doctors DO read and follow, but is initiated once you are within 6 months of death, again, often completed by or at least with a family member. In the US, close and deep social ties with trustworthy people of good judgement is the key to a good death for most.
posted by latkes at 4:35 PM on April 30, 2023 [4 favorites]
"...often completed by or at least with a family member. In the US, close and deep social ties with trustworthy people of good judgement is the key to a good death for most."
And for those of us without such we'll have to cope the best we can.
posted by aleph at 5:15 PM on April 30, 2023 [1 favorite]
And for those of us without such we'll have to cope the best we can.
posted by aleph at 5:15 PM on April 30, 2023 [1 favorite]
Both of my parents had advanced directives and I had the POA to make decisions for my mother when she was in late stage cancer treatment. I will say that everyone involved with my parents in their last days respected their wishes. With my dad, while he was waiting to be transferred to hospice, he was in a Baptist hospital. The nurse told us straight up, they do not respect DNR/advanced directives here and if he flatlines we are required to try to revive him. However, the attending let us know that the patient or family could request monitoring devices be removed. My dad, despite the vast amounts of morphine he was on for the pain, got what the doctor was saying immediately and asked for that. My mom didn't quite get it but neither Dad nor I wanted to explain with the doctor and nurses in the room. Sure enough, two days later he passed quietly after Mom and I went to lunch.
With my mom, she was at a Jewish hospital and eventually hospice, they were very respectful and helpful with explaining things and what things would me. Like explaining in detail what it means to be on a feeding tube, and so forth. It was much easier than the dance we had to do with Dad. So not only do you need to make sure you have an advanced directive and family that will respect it, you have to make sure you don't get stuck in one of the many religious hospitals that will ignore your wishes.
Of course, while all this was going on, my husband was pushing me to advocate better for my parents and get more intensive treatment. Which made me realize that when I get ill, I cannot relying on him to respect my wishes regardless of what I have written down or what we've discussed. So that's a whole new thing to think about.
posted by teleri025 at 7:58 PM on April 30, 2023 [3 favorites]
With my mom, she was at a Jewish hospital and eventually hospice, they were very respectful and helpful with explaining things and what things would me. Like explaining in detail what it means to be on a feeding tube, and so forth. It was much easier than the dance we had to do with Dad. So not only do you need to make sure you have an advanced directive and family that will respect it, you have to make sure you don't get stuck in one of the many religious hospitals that will ignore your wishes.
Of course, while all this was going on, my husband was pushing me to advocate better for my parents and get more intensive treatment. Which made me realize that when I get ill, I cannot relying on him to respect my wishes regardless of what I have written down or what we've discussed. So that's a whole new thing to think about.
posted by teleri025 at 7:58 PM on April 30, 2023 [3 favorites]
my husband was pushing me to advocate better for my parents and get more intensive treatment
At the most generous and polite, I would say he was pushing you to advocate differently for your parents, but in reality I think he was (without malice) pushing you to advocate worse, and what you actually did was better.
I'm sorry that he was unsupportive. I also suspect that my husband would advocate for me differently to how I would want, when push came to shove, as he weighs the costs and benefits differently to me.
posted by plonkee at 3:59 AM on May 1, 2023 [3 favorites]
At the most generous and polite, I would say he was pushing you to advocate differently for your parents, but in reality I think he was (without malice) pushing you to advocate worse, and what you actually did was better.
I'm sorry that he was unsupportive. I also suspect that my husband would advocate for me differently to how I would want, when push came to shove, as he weighs the costs and benefits differently to me.
posted by plonkee at 3:59 AM on May 1, 2023 [3 favorites]
Not to downplay your experience, aleph, but it sounds like you may have been on "the floor" rather than in "the unit." That is, your illness was not severe enough to warrant ICU admission and could be handled on a general medical-surgical or medical-telemetry floor.
On the Floor, nurse's aides really do handle a huge amount of patient care, because the nurse-to-patient ratio really doesn't allow much time outside of those tasks which must be done by a nurse and cannot be delegated to an aide. A "good" floor ratio might have 1 nurse covering 5 patients, with more predatory for-profit hospitals routinely and grossly exceeding that. In these situations, aides end up doing a lot of personal care in the form of hygiene, feeding, and toileting.
In my job in the ICU, aides are still important (they're never not), but the profundity of illness means that many of those activities of daily living -- eating, going to the bathroom, etc. -- are abrogated in some way. A nurse's side would and should not be doing oral care on an intubated patient, or placing and managing a urinary catheter or rectal tube. Nor would they be managing tube feedings through any of the various tubes used to deliver nutrition.
This is, of course, assuming an aide is even available. Many times in my career I've worked shifts without aides or with such a bare minimum staffed as to be functionally non-existent. To address latkes' point here, there is absolutely an erasure of the working class people who keep hospitals running in favor of a narrative made up of "doctors and nurses" (or more often "doctors"). There have been many times though -- particularly during the pandemic -- where I and other nurses have been our own aides, respiratory therapists, and housekeeping, among other jobs.
I'm part this is why articles such as this one irk me. It presents a physician-centric narrative where the rest of the constellation of healthcare workers are given (literally) a one sentence acknowledgement. Particularly since the article is written by an attending physician, I have to roll my eyes a bit at the pathos over goals of care discussions with families, which are far too often carried out by residents and fellows and far too often in a brisk and cursory manner, leaving those of us actually at the bedside to offer explanations and apologetics for what just transpired. This article is better than most because it at least acknowledges both the moral injury life-extending measures cause to nurses and others providing direct patient care, as well as the discomfort causes by the basic care necessary to maintain a human body. Yet it still quickly shifts into the passive voice when talking about patients being "prodded and turned," dialyzed, ventilated, stuck for labs, and any other the rest of the violations of bodily autonomy common in healthcare, as those are things that just happen but themselves and not but the action of the rest of us medical hoi polloi.
The above kvetching is not entirely a tangent. I fully agree with the writer in the insidious effects of market-driven healthcare (this I don't think the linked article about "more likely to receive invasive procedures" is as really as persuasive as presented). However, framing the discussion in terms of what is essentially call for individual physicians to contemplate whether or not a participant patient really needs ICU admission while vaguely handwaving handwaving towards structural issues is frustrating. Such an approach diagnoses the problem, but then absents itself from the harder conversation about what, exactly, it would mean to have a "radical reimagining of our healthcare system" would look like, leaving others to again do the dirty work.
As this is not the first time I've read this sort of article, it's easy to see why specific radical changes are left vague (other than arguing against advanced directives?). They would necessarily entail telling families upfront that they're loved one is going to die and that medical professionals are not going to intervene. This both undermines the mystique of modern healthcare, which is supposed to routinely provide miracles, but would also mean that a percentage of patients who might actually recover will die. It's a conversation that no one wants to have. Such a conversation might be easier if everyone in healthcare were not so overworked, meaning redesigning the system to improve the ratio of patients to physicians, nurses, etc., so that meaningful and in-depth disgusting can happen. Making that change, however, would really entail an absolute reorganization of American healthcare, and one that capitalist forces in medicine, business, and government have actively fought against.
posted by Panjandrum at 9:26 AM on May 1, 2023 [1 favorite]
On the Floor, nurse's aides really do handle a huge amount of patient care, because the nurse-to-patient ratio really doesn't allow much time outside of those tasks which must be done by a nurse and cannot be delegated to an aide. A "good" floor ratio might have 1 nurse covering 5 patients, with more predatory for-profit hospitals routinely and grossly exceeding that. In these situations, aides end up doing a lot of personal care in the form of hygiene, feeding, and toileting.
In my job in the ICU, aides are still important (they're never not), but the profundity of illness means that many of those activities of daily living -- eating, going to the bathroom, etc. -- are abrogated in some way. A nurse's side would and should not be doing oral care on an intubated patient, or placing and managing a urinary catheter or rectal tube. Nor would they be managing tube feedings through any of the various tubes used to deliver nutrition.
This is, of course, assuming an aide is even available. Many times in my career I've worked shifts without aides or with such a bare minimum staffed as to be functionally non-existent. To address latkes' point here, there is absolutely an erasure of the working class people who keep hospitals running in favor of a narrative made up of "doctors and nurses" (or more often "doctors"). There have been many times though -- particularly during the pandemic -- where I and other nurses have been our own aides, respiratory therapists, and housekeeping, among other jobs.
I'm part this is why articles such as this one irk me. It presents a physician-centric narrative where the rest of the constellation of healthcare workers are given (literally) a one sentence acknowledgement. Particularly since the article is written by an attending physician, I have to roll my eyes a bit at the pathos over goals of care discussions with families, which are far too often carried out by residents and fellows and far too often in a brisk and cursory manner, leaving those of us actually at the bedside to offer explanations and apologetics for what just transpired. This article is better than most because it at least acknowledges both the moral injury life-extending measures cause to nurses and others providing direct patient care, as well as the discomfort causes by the basic care necessary to maintain a human body. Yet it still quickly shifts into the passive voice when talking about patients being "prodded and turned," dialyzed, ventilated, stuck for labs, and any other the rest of the violations of bodily autonomy common in healthcare, as those are things that just happen but themselves and not but the action of the rest of us medical hoi polloi.
The above kvetching is not entirely a tangent. I fully agree with the writer in the insidious effects of market-driven healthcare (this I don't think the linked article about "more likely to receive invasive procedures" is as really as persuasive as presented). However, framing the discussion in terms of what is essentially call for individual physicians to contemplate whether or not a participant patient really needs ICU admission while vaguely handwaving handwaving towards structural issues is frustrating. Such an approach diagnoses the problem, but then absents itself from the harder conversation about what, exactly, it would mean to have a "radical reimagining of our healthcare system" would look like, leaving others to again do the dirty work.
As this is not the first time I've read this sort of article, it's easy to see why specific radical changes are left vague (other than arguing against advanced directives?). They would necessarily entail telling families upfront that they're loved one is going to die and that medical professionals are not going to intervene. This both undermines the mystique of modern healthcare, which is supposed to routinely provide miracles, but would also mean that a percentage of patients who might actually recover will die. It's a conversation that no one wants to have. Such a conversation might be easier if everyone in healthcare were not so overworked, meaning redesigning the system to improve the ratio of patients to physicians, nurses, etc., so that meaningful and in-depth disgusting can happen. Making that change, however, would really entail an absolute reorganization of American healthcare, and one that capitalist forces in medicine, business, and government have actively fought against.
posted by Panjandrum at 9:26 AM on May 1, 2023 [1 favorite]
Wow, I need to proofread before posting.
posted by Panjandrum at 3:10 PM on May 1, 2023
posted by Panjandrum at 3:10 PM on May 1, 2023
It's a bit weird to me that the author seems somewhat dismissive of advanced medical directives. I know they aren't a panacea.
Well, my now-wife and I decided we basically had to get married after I was severely injured and the ER ignored my directives and refused to honor my then-partners fully executed power of attorney[1]. They basically told her straight up "Not wife? No say. Get out.". So my experience is either don't trust the directives or have an on-call lawyer who will show up in any random ER 7/24/365 to enforce your rights.
[1] yes, yes...I could have sued and spent a lot of money to maybe possible one-day say "SEE! I WAS RIGHT!". You first.
posted by kjs3 at 8:46 PM on May 2, 2023 [2 favorites]
Well, my now-wife and I decided we basically had to get married after I was severely injured and the ER ignored my directives and refused to honor my then-partners fully executed power of attorney[1]. They basically told her straight up "Not wife? No say. Get out.". So my experience is either don't trust the directives or have an on-call lawyer who will show up in any random ER 7/24/365 to enforce your rights.
[1] yes, yes...I could have sued and spent a lot of money to maybe possible one-day say "SEE! I WAS RIGHT!". You first.
posted by kjs3 at 8:46 PM on May 2, 2023 [2 favorites]
I’ve always wondered how one actually got a DNR enforced. I mean, I’ve never encountered any way to have a DNR legally and permanently attached to my being in a way that any doctor, EMT, etc. will know (and hopefully obey) my wishes.
Enforced? Dunno.
But I have a mildly disturbing number of friends with some variation of "DNR" tattooed on their chests, with varying amounts of flourish. Including one who has the whole text "DO NOT RESUSCITATE" as a calligraphy spiral over her sternum.
posted by kjs3 at 8:56 PM on May 2, 2023 [1 favorite]
Enforced? Dunno.
But I have a mildly disturbing number of friends with some variation of "DNR" tattooed on their chests, with varying amounts of flourish. Including one who has the whole text "DO NOT RESUSCITATE" as a calligraphy spiral over her sternum.
posted by kjs3 at 8:56 PM on May 2, 2023 [1 favorite]
The Atlantic: The Medical Care That Helps No One: My 10 years as an ICU nurse have shown me that futile care is confusing and traumatic for family members, demoralizing for doctors and nurses, and dehumanizing for patients.
My 10 years as an ICU nurse have shown me that futile care occurs everywhere, and that it is confusing and traumatic for family members, demoralizing for doctors and nurses, and dehumanizing for patients. My experience has also shown me that most Americans are not prepared for what can happen in an ICU. As health-care professionals, we need to pull back the curtain; as a society, we need to encourage people to have difficult conversations and make difficult decisions about what forms of care are acceptable to them, long before the moment of crisis.posted by jenfullmoon at 8:59 AM on May 11, 2023 [1 favorite]
Hopeless codes are one thing, but what disturbs me more—and happens more often—is providing intensive care to people who have lost the ability to communicate or move, who will not recover but are prevented from dying. Because of powerful drugs that boost blood pressure and normalize cardiac function, and machines that perform the work of vital organs, preventing someone from dying immediately is far easier than returning them to health.
Because people can live long-term on ventilators, receiving medication and nutrition through feeding tubes, many patients can be stabilized, survive, and leave intensive care only to live on in limbo, able to do literally nothing but lie in bed, many of them permanently unconscious, sometimes with eyes open but completely unable to communicate or move. Meanwhile, medical professionals clean them, suction their oral and tracheal secretions, turn them, draw their blood, and treat every irregularity in their blood work or vital signs. In this context, the inabilities to breathe, move, eat, and communicate are not problems that must be solved; rather, they become baseline conditions that factor into the discharge plan.
« Older Provocation | "The writing was on the wall. It is now written in... Newer »
This thread has been archived and is closed to new comments
posted by BrotherCaine at 3:16 PM on April 29, 2023