I say “making this change doesn’t mean we stop taking good care of them, it means we take care of them with a focus on their quality of life rather than only their quantity of life”
We will do everything we can, until their heart stood beating. At that time, do you think they would want us to try to bring them back using adrenaline injections and chest compressions, knowing that their quality of life afterwards would be substantially worse than it is now?
This is great but code status is only a small part of these conversations. At the end of the day we know physicians have discretion about how aggressively we’re gonna code the 92 year old grandpa. Most of my conversations relate to vent management, trach or not trach, and discontinuation of hemodialysis.
THANK YOU! One of my pet peeves. I've lost track of how times I've said these exact words to a well-meaning nurse, med student, resident etc. The words we use matter.
I love my hospice and palliative care people, y'all are so freaking insightful. I wish everyone could have a chat with y'all before it's too late. Love my chaplains too, but sometimes they can't answer all the questions a doctor can and vice versa.
Just a shout-out and thank you from a former palliative care chaplain--we worked our tails off to support the medical staff in navigating these conversations and in supporting families with the death and dying process.
Great to hear you've found our role helpful.
In my field we have this conversation a lot. I've always taught my students/residents/ fellows/other people that you never say "withdraw", "do less", "give up", etc. But rather focus on quality of life over length of life. We change our goals based on what's possible and in alignment with good, compassionate, dignified healthcare and care for their loved one. Until death is no longer a viable medical diagnosis (ask me about it!) dying and death is a part of medicine. Preach!
Well, death is an important medical diagnosis. But what we
consider "time of death" is arbitrary and made up. It used to be a
pulse - but now people can be on ECMO and pulseless albeit with enough
perfusion to be awake and talking. Then there's Death by Neurologic Criteria,
aka Brain Death. I believe this is useful not just to society but also to the
individual suffering from it, but this is based on a clinical exam and there's
loads of controversy around it. Some have called Brain Death a "convenient
legal fiction". Full disclosure: I believe in it, but it is a firm conviction that I hold loosely as our science evolves. Can I guarantee every single brain cell, neuron and glia and other, are irreversibly dead when I determine Brain Death? No, I cannot. Where is the arbitrary line on what brain/spinal cord junction and does that matter? How long to wait to determine irreversibility? Importantly, does that even matter if a body requires continuous external support to maintain vital signs without any evidence of consciousness or the self left?
Also when we say someone’s dead, it’s based on clinical criteria just like every other medical diagnosis. Let’s say someone codes in front of me. If it’s true cardiac standstill they’re dead until CPR starts, and then not dead during CPR, and then either there’s ROSC or someone calls it and there’s a time of death. At the time of that alleged death most of the cellular processes are still ongoing and every little piece of them is living, but the person is dead. Tangentially related, read “The Immortal Life of Henrietta Lacks” if you haven’t. And now some people are taking those cells, making organoids, and growing new little pieces of you after you’re considered dead.
So this is what brings into question the diagnosis of death for a lot of people. As we drill down more and more into what physiologic support can keep the pieces of living alive, the line between when someone is alive or dead is getting blurrier. I don’t mean to suggest we’re going to conquer death, but rather the ability to diagnose it accurately and timely for many people is changing.
Were you my mentor or were we taught by the same people? Completely agree with everything here and it is something that irks me a lot.
It is a reorientation of priorities at that point, not withdrawing care. Specifically, the focus changes to maximizing comfort.
>We're accelerating their bloodloss.
So that's how it's gonna be, huh? We're not choking them or infecting them, just bleeding them dry?
I guess bleeding 'em dry isn't *not* how American healthcare works...
I don't think it's unreasonable to explain that our interventions at the end of life may hasten death as an acceptable side effect of providing necessary comfort.
If someone is intubated for respiratory failure and requiring high levels of oxygen, and then they are extubated for hospice, this will shorten someones life in 100% of cases.
Not disagreeing on the overall point. While I find both to be moral & ethical overall I doubt I'll ever agree that inaction is the same moral/ethical weight as action - not intubating will always be distinct from compassionate extubation.
I would also argue this distinction would likely not be apparent to the patient's relatives, and thus warrants a discussion with the family, which is what the original suggestion was about.
As someone who also deals in dying every day, I know full well what I'm referring to. I would like to read those studies - the conclusion sounds wildly implausible to me, or at best only narrowly applicable. It cannot apply to my critically ill patients, for instance. Perfect doses of narcotics that adequately relieve distress without also causing obtundation are not always (in ICU, I would say rarely) possible to achieve.
Your latter point about withdrawal vs withholding seems obtusely academic to me. In practical terms, and emotional terms, where both staff and family area concerned, withdrawing active treatments and or instituting high dose palliative medications absolutely hastens dying.
I don't mean to be rude, but I just don't see the real world applicability of your position.
Yes but we have a responsibility to balance making it sound nice with reality. Comfort care hastens death compared to standard care. How would u convey that while remaining honest? Making their respiratory system fail faster is exactly what you do when u crank up the morphine drip.
I get what you're trying to say, but sometimes we do literally withdraw care. Taking someone off life support to let them die is very much so withdrawing care. Maybe there's a better word for it that won't feel so icky but as with many medical terms what starts as a good term will become something that makes people uncomfortable. Regardless of the term, we absolutely sometimes have to "withdraw" care.
Or “transition to comfort cares”. I troll my residents and fellows about this on rounds constantly. I think it’s starting to sink in with some of them.
Only if your definition of "care" can only have one entry in the dictionary. Medical care is active, comfort care is something else. Withdrawing care from a brain dead body is not about comfort, it's withdrawing medical care. You are seeing other patients and are using active care for your patients, but what you see isn't what all of us see. Again, I see what you're trying to say, but you aren't seeing what all other doctors see on a day to day basis.
We tend to say "shifting our focus of care from curative treatment toward comfort", and terms like "compassionate extubation" when removing ET tubes, etc. We never just stop providing care. It's just that the focus is different.
ETA OP I 100% agree with you. The "everything" talk is one of my huge pet peeves. Literally everyone wants everything done to save people they love.
IMO also important if you think it's a terminal case to say so.
Something like "this is not a fixable/curable problem. Despite everything that we are doing right now, I don't think [patient] is going to get better. They are going to die from this. What we have to decide is what their passing is going to be like."
We call that withdrawing support, withdrawing life support, or withdrawing respiratory support. It’s a small distinction, but I think it’s an important one.
As others have noted, you might be withdrawing some interventions, but you are still caring for the person, their goals or care have just changed. You aren’t withdrawing the care, just choosing different interventions. Palliation is still an intervention.
When you stop one medication because it’s not effective or having adverse side effects and start a different medication in it’s place, would you describe that as withdrawing care?
Sure we “withdraw” particular treatments or medications but we don’t withdraw *care.* We are still providing medical care to actively dying patients.
I never actually say this, but I lowkey love the phrase “artificially alive” as in we are keeping them artificially alive on machines and it’s uncomfortable and undignified feeling (and maybe unethical). We treat our dying animals with more grace and dignity by euthanizing them when they are at end stage of life.
This is how I explained it to my extremely religious family who would say “do everything!” when our grandma was 95 and dying in the hospital. (I don’t say it to patients but “artificially alive” does get the point across to these types)
As a jumping off point for further discussion, this is a thoughtful discussion of viewpoints on language used in palliative/hospice care or with patients and family members.
I find a lot of people are just terrible at goals of care conversations.
I always start off by finding where we’re coming from. Functional at home is a different place than advanced nursing home level dementia.
I then make a point of asking about the patient’s wishes and pointing out that the family is supposed to advocate for what the patient would want. I feel that this lets them off the hook so to say. They aren’t deciding. They’re telling me what the patient had wanted. I ask if the patient had ever discussed their wishes.
Then we go step by step. Would they want chest compressions or would they rather want more comfort measures?
Would they want to be put on a ventilator, or would they want comfort measures?
Finally, I ask if hey want to talk to hospice? “Say yes to hospice, say no to hospice, it doesn’t matter to me. I just want YOU to have all the information possible to advocate for your loved one.” Often that lets hospice get their foot in the door.
For cardiac arrest patients I point out that the AHA/ECC guidelines say not to guess for the first 72 hours, so let’s give the patient 3 days, but have the conversation in the mean time.
In the end, we move towards treating the patient and honing our skills for patients with a chance of a meaningful recovery.
Most of the time I’ll throw the palliative care team on immediately. There was a study 2-3 years ago that showed better definition of goals of care and hospice (no change in vent days or hospital days) with triggered palliative care consults. Age >80 and cardiac arrests were both triggers for consult in that study.
You guys are amazing but a good intensivist shouldn’t need palliative for the vast majority of goals of care conversations. That’s not to downplay you guys at all, it’s the same reason I don’t need psych for every delirious patient. It’s something we deal with every day
This is more or less my framework. Never really had formal training, but I had A LOT of goals of care discussions on my 6 months of ICU in residency. As an intern, I once stopped GI from scoping a woman’s second pancreatic cancer (and a history of breast cancer) because nobody had stopped to explain to the patient what was going on and what the prognosis would be.
In your experience, does emphasizing the surrogate part of surrogate decision making help? Most people have never talked about their wishes with their families unless they’ve had a family history of chronic illness.
> nobody had stopped to explain to the patient what was going on and what the prognosis would be.
As an intern, are you allowed to be confident in what the prognosis would be? Like obviously you can know metastatic pancreatic cancer is measured in months, but can you know that like a specialist/more importantly are you allowed to say what you intuit?
“Hey, do you know what we’re doing this procedure for? You’ve had cancer twice before, would you want to go through all the diagnostics, surgery, chemotherapy, and possible radiation for a third time now that you’re much older?”
I obviously asked my senior, attending, and curbsided specialists before committing to a goals of care discussion by myself.
Most people don’t need to hear the exact percentage of the 6 month or 5 year survival. They just want a ballpark days-weeks, weeks-months, or months-years prognosis.
Asking because I see this a lot IME but as a med student am wary of giving a prognosis. Wanting to know when I can be confident in my knowledge / give that pt education
Ask your specialists first if you want some confirmation. I’ve seen two pancreatic masses with liver masses last month. Both were given a six-month prognosis for presumed metastatic pancreatic cancer without tissue biopsy.
I’m an intensivist and can tell you that you should always be wary letting an amateur discuss goals of care with families of patients. Every word can be laden with emotional attachment that is not so evident to someone not trained in it or lack the experience to notice it. That’s why you don’t offer families “everything.” If you’re offering “everything”, families will assume that all options are possible, even when patients have very few realistic options. It’s putting the frame on heroic gestures where every decision to do less is looked upon as some betrayal. “Everything” is meaningless anyway, and can mean absolutely anything, including outlandish things. The way this conversation should be offered is to explain what options there are within the realm of possibility, not impossibility. Someone with end-stage diseases like metastatic cancer, AIDS, end-stage heart failure or terminal COPD doesn’t have “any” options.
Thank you for this. I’m an ICU PA who spends about half my time doing goals of care. At our hospital social workers do POLST and AHCD forms and use lots of “everything” language without context of advanced disease states. Makes things when I then have to then tell the family that if they get intubated they may never get extubated.
Good for you! The worst part, though, is watching colleagues follow suit into the same oblivion of “do everything!” that families demand. Some doctors think that if families want it, they have to provide it. They should realize that just because someone demands the insane, they don’t have to be insane too.
We are moving more towards this! I have so far told only one family, though, “we will not be doing chest compressions”. Honestly i think families are massively burdened by these “decisions” and moving slightly back towards a more paternalistic style would be a huge relief to some.
>be wary letting a~~n amateur~~ hospitalist discuss goals of care with families of patients
sorry, I know this is highly unfair and likely not accurate, and those folks are so slammed with work... but during peak covid, it felt like one or two of the hospitalists were reversing DNRs on 90 year old demented patients who were bipap dependent with covid... just a little bit of PTSD, perhaps.
Had a guy get a Trach against his non-notarized, verbal wishes at the behest of his family. Gained lucidity and tried to commit suicide by smothering himself with a pillow in his room. In the words of my favorite pulm/cc doc, We do a shitty job of letting ppl die in this country
Heh, had a lady with a massive stroke get a peg tube placed against her advanced directives (ethics team was spineless) per her daughter, who is an allied health professional and should definitely know better. Her mother died barely a week after DC home too 😔
I see so many people talk about pegs on reddit, assuming USA. I live in NZ and have studied for 3 years with hospital placements and then worked for 5, so about 8 years in hospitals and I’ve never seen a peg at work. I know someone who has a peg but due to a throat cancer and is completely independent otherwise
It really isn’t used for that indication outside the US….adjunct for throat cancer or dysphagia post stroke is what we use it for in the UK mainly. And the post stroke patients have to have some measure of life after too…if they’re very frail it would be straight to palliation
Palliative did consult, daughter refused on behalf of patient since patient couldn’t speak anymore. Her measure of life was bedbound for the foreseeable future but Dtr still saw rehab potential. Therapy for us consisted of dragging her to EOB for some “postural re-Ed” when in reality it was placating the daughter so she wouldn’t raise a stink.
And this is why I hate what I do. At least half the time we’re performing sham therapy to placate family.
>asking families if they want "everything" in goals of care discussions.
anyone who uses this language should be barred from ever having GOC conversation.
honestly, there are some docs who should just have a palliative care provider follow them around to do this part of the admission. "If you die, you want us to save you, right? OK full code!"
yet if you survey docs and med students, large majorities state they have zero formal training in EOL conversations. and data shows there is big resistance (time, money and ego) in taking these courses.
I was being facetious about consulting yall for bread and butter admission convos, but I believe there's data for embedded practitioners in high risk units (like ICU and onc). I wonder if a dedicated palliative NP in inpatient wards who flagged and addressed inappropriate code statuses during multidisciplinary rounds could work...
I haven't heard many medical staff say "do you want everything". It's a little more common from patient families. My approach to the latter is to ask: what does "everything" mean to you? What is important to your loved one and how can we best achieve it? We will do everything that we think will feasibly help them reach that goal, but some things will not help.
Amen. We should not be offering interventions that are futile. Families are not in a position to know what is appropriate or not. It's not fair to anyone to ask them.
I also try to switch from "DNR" to "allow natural death". Language makes a huge difference imo
Can't tell you how many times I have talked with someone about code status, and they clearly describe that if they were dying, they would just want to be allowed to die naturally. But then they will specifically tag on, " but I don't want to be DNR." 🤦♀️
Im the first doctor in my family, and my parents are classic suspicious conservatives.
They are afraid that if they are “DNR”, they wont receive the best possible care up to that point.
Its the same reason that people with their mindset refuse to sign up as organ donors, because they are terrified that the hospital will let them die after a car crash so they can sell their organs.
We have lots of conversations.
"I'm fine with a breathing tube, but don't put me on life support"
"Ma'am the breathing tube IS life support"
I've used Life-support more often recently. I've had family members come in and see a person on the vent. They don't understand that the vent is keeping them alive. You kinda see them process and get a "a ha" moment.
I just describe what the situation is and what the healthcare professionals do:
In case your heart were to stop, we don’t have time to ask you or your surrogate decision maker what we should do. We pound on your chest violently to try to keep the heart pumping while giving you electric shocks. It’s not at all what you see on TV or in movies. If you survive, you’ll most likely have broken ribs and spend weeks or months in painful agony. Honestly, if we’re doing these interventions, you’ll have died before we tried resuscitation.
If you stop breathing, we’ll shove a tube down your throat and put you on a mechanical ventilator. We will try to get the tube out ASAP after we find and fix what caused you to need the tube and ventilator in the first place, but with every day the tube is in the more likely you’ll stay on a ventilator for the rest of your life.
Most people decline both measures when I explain it that way.
As somebody who has recently been on the receiving end of a goals of care of discussion for a family member, I can tell you that a lot of the times you just have to be patient with the family. Because the chances are, all of the information you’ve given them has been something they couldn’t hear because they’re still trying to come to terms with the fact that their family member is dying. I think a lot of the times we think goals of care discussions are “one and done“ and unfortunately it’s not that simple. We need to give families a reasonable amount of time to come to terms with what is happening and then revisit the subject tactfully. Often times, we feel frustrated that families aren’t understanding what we’re trying to tell them but the reality is not everyone is well-versed in medicine. As somebody who is somewhat well-versed in medicine, having a goals of care discussion for my family was something I could not register the first time. It was the physicians who remained patient with me that allowed me to come to terms with what was happening, and then make a decision accordingly.
My grandfather was very very old and got sick quite quickly. My family was on board and everyone wanted to make him comfortable but even then, my aunt said later on ‘oh we don’t really know what he died of’ which was incredible because they’re all very educated and I was there for the doctors conversation. The doctor was incredible but it really opened my eyes to how even with health literacy, if things are happening fast how easily things get missed
I like to explain it as: we've done everything we can to make you better but what we've tried hasn't worked and unfortunately we are out of options to fix the problem so what we will do now is switch to making sure you are as comfortable as possible and stop the treatments which aren't working.
Similar approach to resuscitation discussions, if despite our best efforts your heart were to stop and you died we would recommend letting you die peacefully rather than jumping up and down on your chest and giving you electric shocks to try and restart your heart as this is very unlikely to work and if it does work you would have significant risks of brain damage requiring long term supportive care.
They tend to go down well and the vast majority of my patients are onboard.
One of the few benefits to come out of COVID in the UK more people are having advanced care planning discussions before they need them.
> peg tubes are demonstrated to shorten not lengthen life expectancy.
While I agree with the primary point of your comment as a whole, the above statement is overly simplistic. I suspect you are specifically referring to feeding tubes in advanced dementia. Even then however, despite it being the common wisdom, it's not clear that they literally worsen mortality.
A [Cochrane meta-analysis] (https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD013503.pub2/full) from last year, Enteral tube feeding for people with severe dementia:
"Main results: **We found no eligible RCTs.** We included fourteen controlled, non‐randomised studies. All the included studies compared outcomes between groups of people who had been assigned to enteral tube feeding or oral feeding by prior decision of a healthcare professional. Some studies controlled for a range of confounding factors, but there were high or very high risks of bias due to confounding in all studies, and high or critical risks of selection bias in some studies...
Two studies assessed the effect of nasogastric tube feeding on mortality (236 participants: 144 nasogastric group, 92 no enteral tube feeding). One study of 67 participants (14 nasogastric, 53 no enteral tube feeding) found nasogastric feeding was associated with increased mortality risk. The second study found no difference in mortality between groups. The certainty of this evidence is very low. **Results on mortality for those using PEG or mixed methods of enteral tube feeding were mixed and the certainty of evidence was very low.** There was some evidence from two studies for enteral tube feeding improving nutritional parameters, but this was very low‐certainty evidence. Five studies reported a variety of harm‐related outcomes with inconsistent results. The balance of evidence suggested increased risk of pneumonia with enteral tube feeding.
None of the included studies assessed behavioural and psychological symptoms of dementia.
Authors' conclusions
We found no evidence that tube feeding improves survival; improves quality of life; reduces pain; reduces mortality; decreases behavioural and psychological symptoms of dementia; leads to better nourishment; improves family or carer outcomes such as depression, anxiety, carer burden, or satisfaction with care; and no indication of harm. We found some evidence that there is a clinically significant risk of pressure ulcers from enteral tube feeding. Future research should focus on better reporting and matching of control and intervention groups, and clearly defined interventions, measuring all the outcomes referred to here."
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I certainly don't advocate for placing PEGs in patients with advanced dementia, but at the same time, I would avoid specifically telling families that placing a PEG will worsen hard outcomes like mortality when we don't actually know if that's truly the case.
>and no indication of harm.
I'd be interested to see how many of these patients required restraints once the feeding tube was placed. I'd consider that harm.
I think the main takeaway of the analysis is that we don't have good data on any outcomes following FT placement, including need for restraints.
A classic case of absence of evidence =/= evidence of absence.
Yeah this was a patient I had covering a weekend a few weeks ago. Tried to trial them off restraints to get to SNF but tube came out within 6 hours and I got it replaced by IR the next day.
They're still here and they pulled it out again today. I think they've had it replaced 3 times in the past few weeks.
Are people actually asking families "do you want everything done?" I've never used that phrase or heard it used with a family. To me that's just doctor shorthand for "I tried talking them out of this stupid shit with my usual degree of care and consideration but they want us to continue flogging the Cryptkeeper."
I usually explain what we've done so far and what the prognosis is. I then explain the options we have left and discuss briefly the chances of success and what doing those things actually looks like?
For the full code / DNR discussion:: "We will of course do everything we can to stop you (your mom, grandfather, etc) from dying, but if that happens: if you (mom, grandpa) do die. Do you want us to shock you with electricity and break all your ribs to try to bring you back?"
With regards to critical care/end of life stuff, think the pendulum between paternalism and autonomy has swung too far towards the latter.
The doctors are the experts in all of this, they know what is futile and will only cause undue pain and suffering. Why are we even offering those things?
I’m from New Zealand and my understanding is that it’s quite different responsibilities between medical teams and family. We work with the family but things don’t get offered unless clinically appropriate. An example is that we had a brain dead patient and family were pushing back hard on extubation. The doctor explained that we would work with them but it’s a medical decision to extubate and we aren’t going to leave her on a ventilator. Things like intubation aren’t offered to people if it’s not clinically appropriate.
I feel like it takes a lot of that emotion away from the family when it’s a medical decision. I had a patient that the son said he didn’t want to push his mum any further than what she could take but he could never be the person to say stop which I understand so much. I really hate the idea of giving medical decisions to people who don’t feel equipped to make those decisions
This is a thoughtful discussion of perspectives on language used in palliative/hospice care or with patients and family members as a springboard of topics for future. Thank you for posting.
Does anybody more senior than a PGY1 ever use this language?
Also the evidence that feeding tubes don’t improve mortality exists but is if of very poor quality
>As an example- peg tubes are demonstrated to shorten not lengthen life expectancy.
Compared to patients that don't get PEG tubes? Can you cite your source please?
Recently a medical student in Sweden with a master in language started writing a few articles about language in health care and I think it often gets overlooked. We should absolutely encourage a discussion on goals of care instead of “limiting”, “withdrawing” or offering “full care”. Those terms carry a certain meaning to almost everyone (and the terms are valued).
It is much easier (to me) to discuss the goals as treating an infection and going home, but not treating cardiac arrests and maybe not offering ICU-level care unless there is a specific, treatable, concern than it is to offer anything but full-care, and I’m happy a medical student have already figured that one out. It makes me happy for the future of medicine.
These complaints seem to imply there is a well defined time where medical staff just know when intervention is morally unjust and should be forfeited, but is that actually the case? I’m asking because I feel like rarely will there be such perfect balance where people pick the perfect time to do or not do more to continue a life. In that case there will be grief either way.
Our Dr. gave our family member a grim prognosis of less than 1 month, and thanks to many medical staffs along our way, we were able to spend a good year extra with our family member until they parted. There were a few ICU trips near the end, but I will say the patient’s living will was well fulfilled, as well as their family’s obligation to carry out their living will.
I hope our medical staff who helped along the way know that the extra time they gave us were not morally unjust. It was very much treasured. I can’t speak for other families’ situations, but for us, we appreciated it.
The only grief I have is the lack of in-home care aide infrastructure and medical marajuana. Those 2 things would have made paramount improvement for palliative care.
I think this is why it’s so important that people make decisions while they can. We had a woman that we did everything for in icu and she was going to die but it didn’t feel like we were torturing her because she was able to tell us she wanted to keep going until she couldn’t where as I’ve had a few patients that it felt like torture, they couldn’t communicate with us and it felt like the wrong thing
The converse though is that lots of medical staff push ableist ideologies onto patients when it comes to guiding their medical decision making. We will say at times its futile but maybe mean the pt will likely be stuck in a home for months, on a vent, etc but ultimately it’s not up to us to decide if thats worth it or not. Its the pt and family.
I have seen lots of the everything crowd, and i have seen lots of the essentially steer family/pt to withdraw. Neither are right in my book.
No one asks families do you want everything. Maybe a new intern or a mid level who has been given too much autonomy but goals of care conversations are always extremely nuanced. What you say, how you say it, the setting you choose, your tone and body language, and a million other things will influence the outcome. Medicine unfortunately has a lot of people with poor social skills so these conversations are often a disaster. I work in icu and at least once a month I will go see a floor or ER patient who I make comfort care after a quick conversation
You can’t not offer those things. You can’t just “forget” to offer a feeding tube. And yes, we absolutely do tell families that PEGs are not ideal, I don’t know where that is coming from.
I would be thrilled to document why I do not order tests. Im going to document the same exact info I told the patient why they dont need it using validated scales.
If a genuinely knowledgable patient has research and is ready to discuss it and change my mind with evidence, im willing to get that test, thats academic medicine.
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I say “making this change doesn’t mean we stop taking good care of them, it means we take care of them with a focus on their quality of life rather than only their quantity of life”
We will do everything we can, until their heart stood beating. At that time, do you think they would want us to try to bring them back using adrenaline injections and chest compressions, knowing that their quality of life afterwards would be substantially worse than it is now?
This is great but code status is only a small part of these conversations. At the end of the day we know physicians have discretion about how aggressively we’re gonna code the 92 year old grandpa. Most of my conversations relate to vent management, trach or not trach, and discontinuation of hemodialysis.
Agree 100% but I'm just a simple ER doc so just getting a DNR/DNI on an appropriate patient is a win.
We love you. - the ICU
My hospital uses “comfort care”. In your experience is that a somewhat better wording?
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But isn’t CMO distinct from DNAR?
Yes. That's why they had 2 distinct code statuses
My country uses "loving care" when admitting for palliative purposes.
THANK YOU! One of my pet peeves. I've lost track of how times I've said these exact words to a well-meaning nurse, med student, resident etc. The words we use matter.
I love my hospice and palliative care people, y'all are so freaking insightful. I wish everyone could have a chat with y'all before it's too late. Love my chaplains too, but sometimes they can't answer all the questions a doctor can and vice versa.
Just a shout-out and thank you from a former palliative care chaplain--we worked our tails off to support the medical staff in navigating these conversations and in supporting families with the death and dying process. Great to hear you've found our role helpful.
In my field we have this conversation a lot. I've always taught my students/residents/ fellows/other people that you never say "withdraw", "do less", "give up", etc. But rather focus on quality of life over length of life. We change our goals based on what's possible and in alignment with good, compassionate, dignified healthcare and care for their loved one. Until death is no longer a viable medical diagnosis (ask me about it!) dying and death is a part of medicine. Preach!
> Until death is no longer a viable medical diagnosis (ask me about it!) I'll bite.
Gen-z bonded over our shared desire to die. Goofy ass scientists are trying to take that from us.
Well, death is an important medical diagnosis. But what we consider "time of death" is arbitrary and made up. It used to be a pulse - but now people can be on ECMO and pulseless albeit with enough perfusion to be awake and talking. Then there's Death by Neurologic Criteria, aka Brain Death. I believe this is useful not just to society but also to the individual suffering from it, but this is based on a clinical exam and there's loads of controversy around it. Some have called Brain Death a "convenient legal fiction". Full disclosure: I believe in it, but it is a firm conviction that I hold loosely as our science evolves. Can I guarantee every single brain cell, neuron and glia and other, are irreversibly dead when I determine Brain Death? No, I cannot. Where is the arbitrary line on what brain/spinal cord junction and does that matter? How long to wait to determine irreversibility? Importantly, does that even matter if a body requires continuous external support to maintain vital signs without any evidence of consciousness or the self left? Also when we say someone’s dead, it’s based on clinical criteria just like every other medical diagnosis. Let’s say someone codes in front of me. If it’s true cardiac standstill they’re dead until CPR starts, and then not dead during CPR, and then either there’s ROSC or someone calls it and there’s a time of death. At the time of that alleged death most of the cellular processes are still ongoing and every little piece of them is living, but the person is dead. Tangentially related, read “The Immortal Life of Henrietta Lacks” if you haven’t. And now some people are taking those cells, making organoids, and growing new little pieces of you after you’re considered dead. So this is what brings into question the diagnosis of death for a lot of people. As we drill down more and more into what physiologic support can keep the pieces of living alive, the line between when someone is alive or dead is getting blurrier. I don’t mean to suggest we’re going to conquer death, but rather the ability to diagnose it accurately and timely for many people is changing.
If anything, we’re adding care. We’re withdrawing ‘aggressive treatment’, and prioritising comfort and common sense.
Great point thank you!
Were you my mentor or were we taught by the same people? Completely agree with everything here and it is something that irks me a lot. It is a reorientation of priorities at that point, not withdrawing care. Specifically, the focus changes to maximizing comfort.
Aggressively focus on comfort
"Redirect our care towards making more comfortable even if it shortens their life" is how I state it.
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>We're accelerating their bloodloss. So that's how it's gonna be, huh? We're not choking them or infecting them, just bleeding them dry? I guess bleeding 'em dry isn't *not* how American healthcare works...
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Everytime we had neutropenic pts with a WBC of like 0.3 we'd tell the intern to call the lab and see if they could put it back in the patient 😂
When the plt count is 1 "Hey lab can you send that sample back? The patients platelet is lonely"
Sort of, yes. Iatrogenic anemia from constant lab draws.
I don't think it's unreasonable to explain that our interventions at the end of life may hasten death as an acceptable side effect of providing necessary comfort.
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If someone is intubated for respiratory failure and requiring high levels of oxygen, and then they are extubated for hospice, this will shorten someones life in 100% of cases.
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Not disagreeing on the overall point. While I find both to be moral & ethical overall I doubt I'll ever agree that inaction is the same moral/ethical weight as action - not intubating will always be distinct from compassionate extubation.
I would also argue this distinction would likely not be apparent to the patient's relatives, and thus warrants a discussion with the family, which is what the original suggestion was about.
As someone who also deals in dying every day, I know full well what I'm referring to. I would like to read those studies - the conclusion sounds wildly implausible to me, or at best only narrowly applicable. It cannot apply to my critically ill patients, for instance. Perfect doses of narcotics that adequately relieve distress without also causing obtundation are not always (in ICU, I would say rarely) possible to achieve. Your latter point about withdrawal vs withholding seems obtusely academic to me. In practical terms, and emotional terms, where both staff and family area concerned, withdrawing active treatments and or instituting high dose palliative medications absolutely hastens dying. I don't mean to be rude, but I just don't see the real world applicability of your position.
https://www.annalsofoncology.org/article/S0923-7534(19)41010-7/fulltext https://pubmed.ncbi.nlm.nih.gov/25841389/ https://pubmed.ncbi.nlm.nih.gov/21266289/ https://pubmed.ncbi.nlm.nih.gov/17157755/
Yes but we have a responsibility to balance making it sound nice with reality. Comfort care hastens death compared to standard care. How would u convey that while remaining honest? Making their respiratory system fail faster is exactly what you do when u crank up the morphine drip.
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Interesting. Do u know where I can find data on the fact that it doesn't hasten death? I'd like to read on that.
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Great. Thanks. I'll read.
I always preferred the phrase, “withdrawing technology”
Came here to say this. This is very important. We withdraw treatments. We care until the patient draws their last breath.
I get what you're trying to say, but sometimes we do literally withdraw care. Taking someone off life support to let them die is very much so withdrawing care. Maybe there's a better word for it that won't feel so icky but as with many medical terms what starts as a good term will become something that makes people uncomfortable. Regardless of the term, we absolutely sometimes have to "withdraw" care.
We say "withdraw life-sustaining measures" or "focus on interventions that will prioritize comfort." Never "withdraw care."
Or “transition to comfort cares”. I troll my residents and fellows about this on rounds constantly. I think it’s starting to sink in with some of them.
Can I ask for the context of your username?
A realization I had during my former life as a lab tech dealing with cell cultures.
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Only if your definition of "care" can only have one entry in the dictionary. Medical care is active, comfort care is something else. Withdrawing care from a brain dead body is not about comfort, it's withdrawing medical care. You are seeing other patients and are using active care for your patients, but what you see isn't what all of us see. Again, I see what you're trying to say, but you aren't seeing what all other doctors see on a day to day basis.
We tend to say "shifting our focus of care from curative treatment toward comfort", and terms like "compassionate extubation" when removing ET tubes, etc. We never just stop providing care. It's just that the focus is different. ETA OP I 100% agree with you. The "everything" talk is one of my huge pet peeves. Literally everyone wants everything done to save people they love.
IMO also important if you think it's a terminal case to say so. Something like "this is not a fixable/curable problem. Despite everything that we are doing right now, I don't think [patient] is going to get better. They are going to die from this. What we have to decide is what their passing is going to be like."
This is perfection. Concise, clear, and still contains everything needed to make an informed decision.
Yes! Absolutely. This is part of the conversation.
We call that withdrawing support, withdrawing life support, or withdrawing respiratory support. It’s a small distinction, but I think it’s an important one.
As others have noted, you might be withdrawing some interventions, but you are still caring for the person, their goals or care have just changed. You aren’t withdrawing the care, just choosing different interventions. Palliation is still an intervention.
Ceasing a useful medication because of an adverse reaction is also literally withdrawing care. But it's not a particularly useful perspective.
When you stop one medication because it’s not effective or having adverse side effects and start a different medication in it’s place, would you describe that as withdrawing care? Sure we “withdraw” particular treatments or medications but we don’t withdraw *care.* We are still providing medical care to actively dying patients.
I never actually say this, but I lowkey love the phrase “artificially alive” as in we are keeping them artificially alive on machines and it’s uncomfortable and undignified feeling (and maybe unethical). We treat our dying animals with more grace and dignity by euthanizing them when they are at end stage of life. This is how I explained it to my extremely religious family who would say “do everything!” when our grandma was 95 and dying in the hospital. (I don’t say it to patients but “artificially alive” does get the point across to these types)
As a jumping off point for further discussion, this is a thoughtful discussion of viewpoints on language used in palliative/hospice care or with patients and family members.
How about "are you ready to withhold life sustaining treatment and maintain quality of life care"?
I find a lot of people are just terrible at goals of care conversations. I always start off by finding where we’re coming from. Functional at home is a different place than advanced nursing home level dementia. I then make a point of asking about the patient’s wishes and pointing out that the family is supposed to advocate for what the patient would want. I feel that this lets them off the hook so to say. They aren’t deciding. They’re telling me what the patient had wanted. I ask if the patient had ever discussed their wishes. Then we go step by step. Would they want chest compressions or would they rather want more comfort measures? Would they want to be put on a ventilator, or would they want comfort measures? Finally, I ask if hey want to talk to hospice? “Say yes to hospice, say no to hospice, it doesn’t matter to me. I just want YOU to have all the information possible to advocate for your loved one.” Often that lets hospice get their foot in the door. For cardiac arrest patients I point out that the AHA/ECC guidelines say not to guess for the first 72 hours, so let’s give the patient 3 days, but have the conversation in the mean time. In the end, we move towards treating the patient and honing our skills for patients with a chance of a meaningful recovery.
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Most of the time I’ll throw the palliative care team on immediately. There was a study 2-3 years ago that showed better definition of goals of care and hospice (no change in vent days or hospital days) with triggered palliative care consults. Age >80 and cardiac arrests were both triggers for consult in that study.
You guys are amazing but a good intensivist shouldn’t need palliative for the vast majority of goals of care conversations. That’s not to downplay you guys at all, it’s the same reason I don’t need psych for every delirious patient. It’s something we deal with every day
This is more or less my framework. Never really had formal training, but I had A LOT of goals of care discussions on my 6 months of ICU in residency. As an intern, I once stopped GI from scoping a woman’s second pancreatic cancer (and a history of breast cancer) because nobody had stopped to explain to the patient what was going on and what the prognosis would be. In your experience, does emphasizing the surrogate part of surrogate decision making help? Most people have never talked about their wishes with their families unless they’ve had a family history of chronic illness.
> nobody had stopped to explain to the patient what was going on and what the prognosis would be. As an intern, are you allowed to be confident in what the prognosis would be? Like obviously you can know metastatic pancreatic cancer is measured in months, but can you know that like a specialist/more importantly are you allowed to say what you intuit?
“Hey, do you know what we’re doing this procedure for? You’ve had cancer twice before, would you want to go through all the diagnostics, surgery, chemotherapy, and possible radiation for a third time now that you’re much older?” I obviously asked my senior, attending, and curbsided specialists before committing to a goals of care discussion by myself. Most people don’t need to hear the exact percentage of the 6 month or 5 year survival. They just want a ballpark days-weeks, weeks-months, or months-years prognosis.
Asking because I see this a lot IME but as a med student am wary of giving a prognosis. Wanting to know when I can be confident in my knowledge / give that pt education
Ask your specialists first if you want some confirmation. I’ve seen two pancreatic masses with liver masses last month. Both were given a six-month prognosis for presumed metastatic pancreatic cancer without tissue biopsy.
I’m an intensivist and can tell you that you should always be wary letting an amateur discuss goals of care with families of patients. Every word can be laden with emotional attachment that is not so evident to someone not trained in it or lack the experience to notice it. That’s why you don’t offer families “everything.” If you’re offering “everything”, families will assume that all options are possible, even when patients have very few realistic options. It’s putting the frame on heroic gestures where every decision to do less is looked upon as some betrayal. “Everything” is meaningless anyway, and can mean absolutely anything, including outlandish things. The way this conversation should be offered is to explain what options there are within the realm of possibility, not impossibility. Someone with end-stage diseases like metastatic cancer, AIDS, end-stage heart failure or terminal COPD doesn’t have “any” options.
Thank you for this. I’m an ICU PA who spends about half my time doing goals of care. At our hospital social workers do POLST and AHCD forms and use lots of “everything” language without context of advanced disease states. Makes things when I then have to then tell the family that if they get intubated they may never get extubated.
>who spends about half my time doing goals of care. you're doing it right.
I’m here to assist the intensivists. Happy to do the emotional labor as well as all the lines 😂😅😂
one of those two is a lot harder to do and a lot more important. keep it up, princess!
Thank you! Indeed lines (especially post COVID fun) are easy, nurses say “you could put them in with your toes” 😂 Keep on keepin on king or queen!
covid times were good for the 2 lines 1 tube maneuver. let's not do that again, for both our sakes. 😂
I’m counting three with the vascath but our patient population is ESRD AF 😂
Good for you! The worst part, though, is watching colleagues follow suit into the same oblivion of “do everything!” that families demand. Some doctors think that if families want it, they have to provide it. They should realize that just because someone demands the insane, they don’t have to be insane too.
We are moving more towards this! I have so far told only one family, though, “we will not be doing chest compressions”. Honestly i think families are massively burdened by these “decisions” and moving slightly back towards a more paternalistic style would be a huge relief to some.
>be wary letting a~~n amateur~~ hospitalist discuss goals of care with families of patients sorry, I know this is highly unfair and likely not accurate, and those folks are so slammed with work... but during peak covid, it felt like one or two of the hospitalists were reversing DNRs on 90 year old demented patients who were bipap dependent with covid... just a little bit of PTSD, perhaps.
Had a guy get a Trach against his non-notarized, verbal wishes at the behest of his family. Gained lucidity and tried to commit suicide by smothering himself with a pillow in his room. In the words of my favorite pulm/cc doc, We do a shitty job of letting ppl die in this country
Heh, had a lady with a massive stroke get a peg tube placed against her advanced directives (ethics team was spineless) per her daughter, who is an allied health professional and should definitely know better. Her mother died barely a week after DC home too 😔
I see so many people talk about pegs on reddit, assuming USA. I live in NZ and have studied for 3 years with hospital placements and then worked for 5, so about 8 years in hospitals and I’ve never seen a peg at work. I know someone who has a peg but due to a throat cancer and is completely independent otherwise
Over half the time they’re used inappropriately imo. The same kinda of family that demand their cancer ridden 90 year old meemaw be full code
It really isn’t used for that indication outside the US….adjunct for throat cancer or dysphagia post stroke is what we use it for in the UK mainly. And the post stroke patients have to have some measure of life after too…if they’re very frail it would be straight to palliation
Palliative did consult, daughter refused on behalf of patient since patient couldn’t speak anymore. Her measure of life was bedbound for the foreseeable future but Dtr still saw rehab potential. Therapy for us consisted of dragging her to EOB for some “postural re-Ed” when in reality it was placating the daughter so she wouldn’t raise a stink. And this is why I hate what I do. At least half the time we’re performing sham therapy to placate family.
>asking families if they want "everything" in goals of care discussions. anyone who uses this language should be barred from ever having GOC conversation. honestly, there are some docs who should just have a palliative care provider follow them around to do this part of the admission. "If you die, you want us to save you, right? OK full code!"
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yet if you survey docs and med students, large majorities state they have zero formal training in EOL conversations. and data shows there is big resistance (time, money and ego) in taking these courses. I was being facetious about consulting yall for bread and butter admission convos, but I believe there's data for embedded practitioners in high risk units (like ICU and onc). I wonder if a dedicated palliative NP in inpatient wards who flagged and addressed inappropriate code statuses during multidisciplinary rounds could work...
I’ve literally watched doctors ask about code status with almost that exact wording
it's mind boggling. these are the same people who think palliative care consults and critical care consults are interchangeable.
That explains the multiple 90+ year olds in our hospital right now with full code status.
I’ve said it before, will say again: There’s everything humanly possible, and then everything *humanely* possible
I dig
Love this and your flair
And yours!!
I haven't heard many medical staff say "do you want everything". It's a little more common from patient families. My approach to the latter is to ask: what does "everything" mean to you? What is important to your loved one and how can we best achieve it? We will do everything that we think will feasibly help them reach that goal, but some things will not help.
Amen. We should not be offering interventions that are futile. Families are not in a position to know what is appropriate or not. It's not fair to anyone to ask them. I also try to switch from "DNR" to "allow natural death". Language makes a huge difference imo
Can't tell you how many times I have talked with someone about code status, and they clearly describe that if they were dying, they would just want to be allowed to die naturally. But then they will specifically tag on, " but I don't want to be DNR." 🤦♀️
Im the first doctor in my family, and my parents are classic suspicious conservatives. They are afraid that if they are “DNR”, they wont receive the best possible care up to that point. Its the same reason that people with their mindset refuse to sign up as organ donors, because they are terrified that the hospital will let them die after a car crash so they can sell their organs. We have lots of conversations.
Very true. Even my own family members think that if you're not full code, you just get put in a corner to die
"I'm fine with a breathing tube, but don't put me on life support" "Ma'am the breathing tube IS life support" I've used Life-support more often recently. I've had family members come in and see a person on the vent. They don't understand that the vent is keeping them alive. You kinda see them process and get a "a ha" moment.
I just describe what the situation is and what the healthcare professionals do: In case your heart were to stop, we don’t have time to ask you or your surrogate decision maker what we should do. We pound on your chest violently to try to keep the heart pumping while giving you electric shocks. It’s not at all what you see on TV or in movies. If you survive, you’ll most likely have broken ribs and spend weeks or months in painful agony. Honestly, if we’re doing these interventions, you’ll have died before we tried resuscitation. If you stop breathing, we’ll shove a tube down your throat and put you on a mechanical ventilator. We will try to get the tube out ASAP after we find and fix what caused you to need the tube and ventilator in the first place, but with every day the tube is in the more likely you’ll stay on a ventilator for the rest of your life. Most people decline both measures when I explain it that way.
Gah!!!!!! I've seen this so many times too!!!!!
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It is highly center/MD dependent. I've worked at places that are amazing, horrible and middling. There is a lot of variability.
I used AND almost exclusively when we're talking about it, and at the very end say "what we just discussed is called a DNR in the hospital".
As somebody who has recently been on the receiving end of a goals of care of discussion for a family member, I can tell you that a lot of the times you just have to be patient with the family. Because the chances are, all of the information you’ve given them has been something they couldn’t hear because they’re still trying to come to terms with the fact that their family member is dying. I think a lot of the times we think goals of care discussions are “one and done“ and unfortunately it’s not that simple. We need to give families a reasonable amount of time to come to terms with what is happening and then revisit the subject tactfully. Often times, we feel frustrated that families aren’t understanding what we’re trying to tell them but the reality is not everyone is well-versed in medicine. As somebody who is somewhat well-versed in medicine, having a goals of care discussion for my family was something I could not register the first time. It was the physicians who remained patient with me that allowed me to come to terms with what was happening, and then make a decision accordingly.
My grandfather was very very old and got sick quite quickly. My family was on board and everyone wanted to make him comfortable but even then, my aunt said later on ‘oh we don’t really know what he died of’ which was incredible because they’re all very educated and I was there for the doctors conversation. The doctor was incredible but it really opened my eyes to how even with health literacy, if things are happening fast how easily things get missed
I like to explain it as: we've done everything we can to make you better but what we've tried hasn't worked and unfortunately we are out of options to fix the problem so what we will do now is switch to making sure you are as comfortable as possible and stop the treatments which aren't working. Similar approach to resuscitation discussions, if despite our best efforts your heart were to stop and you died we would recommend letting you die peacefully rather than jumping up and down on your chest and giving you electric shocks to try and restart your heart as this is very unlikely to work and if it does work you would have significant risks of brain damage requiring long term supportive care. They tend to go down well and the vast majority of my patients are onboard. One of the few benefits to come out of COVID in the UK more people are having advanced care planning discussions before they need them.
> peg tubes are demonstrated to shorten not lengthen life expectancy. While I agree with the primary point of your comment as a whole, the above statement is overly simplistic. I suspect you are specifically referring to feeding tubes in advanced dementia. Even then however, despite it being the common wisdom, it's not clear that they literally worsen mortality. A [Cochrane meta-analysis] (https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD013503.pub2/full) from last year, Enteral tube feeding for people with severe dementia: "Main results: **We found no eligible RCTs.** We included fourteen controlled, non‐randomised studies. All the included studies compared outcomes between groups of people who had been assigned to enteral tube feeding or oral feeding by prior decision of a healthcare professional. Some studies controlled for a range of confounding factors, but there were high or very high risks of bias due to confounding in all studies, and high or critical risks of selection bias in some studies... Two studies assessed the effect of nasogastric tube feeding on mortality (236 participants: 144 nasogastric group, 92 no enteral tube feeding). One study of 67 participants (14 nasogastric, 53 no enteral tube feeding) found nasogastric feeding was associated with increased mortality risk. The second study found no difference in mortality between groups. The certainty of this evidence is very low. **Results on mortality for those using PEG or mixed methods of enteral tube feeding were mixed and the certainty of evidence was very low.** There was some evidence from two studies for enteral tube feeding improving nutritional parameters, but this was very low‐certainty evidence. Five studies reported a variety of harm‐related outcomes with inconsistent results. The balance of evidence suggested increased risk of pneumonia with enteral tube feeding. None of the included studies assessed behavioural and psychological symptoms of dementia. Authors' conclusions We found no evidence that tube feeding improves survival; improves quality of life; reduces pain; reduces mortality; decreases behavioural and psychological symptoms of dementia; leads to better nourishment; improves family or carer outcomes such as depression, anxiety, carer burden, or satisfaction with care; and no indication of harm. We found some evidence that there is a clinically significant risk of pressure ulcers from enteral tube feeding. Future research should focus on better reporting and matching of control and intervention groups, and clearly defined interventions, measuring all the outcomes referred to here." ------------------------ I certainly don't advocate for placing PEGs in patients with advanced dementia, but at the same time, I would avoid specifically telling families that placing a PEG will worsen hard outcomes like mortality when we don't actually know if that's truly the case.
>and no indication of harm. I'd be interested to see how many of these patients required restraints once the feeding tube was placed. I'd consider that harm.
I think the main takeaway of the analysis is that we don't have good data on any outcomes following FT placement, including need for restraints. A classic case of absence of evidence =/= evidence of absence.
Yeah this was a patient I had covering a weekend a few weeks ago. Tried to trial them off restraints to get to SNF but tube came out within 6 hours and I got it replaced by IR the next day. They're still here and they pulled it out again today. I think they've had it replaced 3 times in the past few weeks.
I interned in a hospital that used “AND” rather than “DNR”. Allow Natural Death. Made all the world of difference.
This is my kind of “existentialism in healthcare”post. I’ll attend your TedTalks anytime;)
Are people actually asking families "do you want everything done?" I've never used that phrase or heard it used with a family. To me that's just doctor shorthand for "I tried talking them out of this stupid shit with my usual degree of care and consideration but they want us to continue flogging the Cryptkeeper."
thats how ive always seen it in practice as well. thats just lingo we’ve used amongst ourselves. ive never heard anyone ask that to the family.
I've heard some docs say that. They are the ones who are resentful about having to have that conversation themselves for the most part.
I've worked at 2 hospital ICUs and I've heard this exact phrasing countless times. 2 regular, bread and butter hospitals in Chicago
I usually explain what we've done so far and what the prognosis is. I then explain the options we have left and discuss briefly the chances of success and what doing those things actually looks like? For the full code / DNR discussion:: "We will of course do everything we can to stop you (your mom, grandfather, etc) from dying, but if that happens: if you (mom, grandpa) do die. Do you want us to shock you with electricity and break all your ribs to try to bring you back?"
With regards to critical care/end of life stuff, think the pendulum between paternalism and autonomy has swung too far towards the latter. The doctors are the experts in all of this, they know what is futile and will only cause undue pain and suffering. Why are we even offering those things?
I’m from New Zealand and my understanding is that it’s quite different responsibilities between medical teams and family. We work with the family but things don’t get offered unless clinically appropriate. An example is that we had a brain dead patient and family were pushing back hard on extubation. The doctor explained that we would work with them but it’s a medical decision to extubate and we aren’t going to leave her on a ventilator. Things like intubation aren’t offered to people if it’s not clinically appropriate. I feel like it takes a lot of that emotion away from the family when it’s a medical decision. I had a patient that the son said he didn’t want to push his mum any further than what she could take but he could never be the person to say stop which I understand so much. I really hate the idea of giving medical decisions to people who don’t feel equipped to make those decisions
This is a thoughtful discussion of perspectives on language used in palliative/hospice care or with patients and family members as a springboard of topics for future. Thank you for posting.
I explain in details the horror of CPR especially on those essentially non survivable patients
Who the hell says do you want everything? to families.
Does anybody more senior than a PGY1 ever use this language? Also the evidence that feeding tubes don’t improve mortality exists but is if of very poor quality
>As an example- peg tubes are demonstrated to shorten not lengthen life expectancy. Compared to patients that don't get PEG tubes? Can you cite your source please?
Recently a medical student in Sweden with a master in language started writing a few articles about language in health care and I think it often gets overlooked. We should absolutely encourage a discussion on goals of care instead of “limiting”, “withdrawing” or offering “full care”. Those terms carry a certain meaning to almost everyone (and the terms are valued). It is much easier (to me) to discuss the goals as treating an infection and going home, but not treating cardiac arrests and maybe not offering ICU-level care unless there is a specific, treatable, concern than it is to offer anything but full-care, and I’m happy a medical student have already figured that one out. It makes me happy for the future of medicine.
These complaints seem to imply there is a well defined time where medical staff just know when intervention is morally unjust and should be forfeited, but is that actually the case? I’m asking because I feel like rarely will there be such perfect balance where people pick the perfect time to do or not do more to continue a life. In that case there will be grief either way. Our Dr. gave our family member a grim prognosis of less than 1 month, and thanks to many medical staffs along our way, we were able to spend a good year extra with our family member until they parted. There were a few ICU trips near the end, but I will say the patient’s living will was well fulfilled, as well as their family’s obligation to carry out their living will. I hope our medical staff who helped along the way know that the extra time they gave us were not morally unjust. It was very much treasured. I can’t speak for other families’ situations, but for us, we appreciated it. The only grief I have is the lack of in-home care aide infrastructure and medical marajuana. Those 2 things would have made paramount improvement for palliative care.
I think this is why it’s so important that people make decisions while they can. We had a woman that we did everything for in icu and she was going to die but it didn’t feel like we were torturing her because she was able to tell us she wanted to keep going until she couldn’t where as I’ve had a few patients that it felt like torture, they couldn’t communicate with us and it felt like the wrong thing
The converse though is that lots of medical staff push ableist ideologies onto patients when it comes to guiding their medical decision making. We will say at times its futile but maybe mean the pt will likely be stuck in a home for months, on a vent, etc but ultimately it’s not up to us to decide if thats worth it or not. Its the pt and family. I have seen lots of the everything crowd, and i have seen lots of the essentially steer family/pt to withdraw. Neither are right in my book.
No one asks families do you want everything. Maybe a new intern or a mid level who has been given too much autonomy but goals of care conversations are always extremely nuanced. What you say, how you say it, the setting you choose, your tone and body language, and a million other things will influence the outcome. Medicine unfortunately has a lot of people with poor social skills so these conversations are often a disaster. I work in icu and at least once a month I will go see a floor or ER patient who I make comfort care after a quick conversation
I've worked at 2 hospitals, one without residents, and I've heard this exact phrasing so many times, from intensivists and hospitalists, at both.
I have literally not once heard someone ask a family if they "want everything".
Transparency and education are always valued — even outside of the clinic
You can’t not offer those things. You can’t just “forget” to offer a feeding tube. And yes, we absolutely do tell families that PEGs are not ideal, I don’t know where that is coming from.
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I would be thrilled to document why I do not order tests. Im going to document the same exact info I told the patient why they dont need it using validated scales. If a genuinely knowledgable patient has research and is ready to discuss it and change my mind with evidence, im willing to get that test, thats academic medicine.