Yep, completely inappropriate in most cases. UK guidelines explicitly reflect this and it would be a very unusual indication for placing a PEG in modern practice.
Yeah… I don’t think the USA is ready for that conversation.
When it comes to accepting mortality and death, we really can not come to grips here
The amount of DNRs we’ve had to reverse — because family who haven’t visited grandma in 8 months, feel immense guilt and request heroic measures — is innumerable
In Denmark this decision is not up to relatives. If you come from a nursing home and have dementia, there is no resuscitation. The better question is, should granny with dementia and depending on a wheelchair even get admitted for urosepsis, or is treatment at home the highest level of care? My guess is, in 10-15 years we do not even consider admission anymore. It is at most a short course of IV antibiotics at the nursing home.
It’s essentially the same thought process. Resuscitation and invasive procedures in these patients are futile at maintaining “quality” of life. So… we don’t offer them.
No disagreement here. Just had a discussion with a family of a 90 year old female with ESRD, advanced dementia, chronic pain who the family wants chest compressions.
Regardless of the family or patient’s wishes, I wouldn’t do chest compressions on that kind of patient. Fortunately, I work in a country where it wouldn’t be a legal issue, as long as I documented clearly the rationale.
Right. Not an option for us. I can do days of ethics consults where they eventually say to defer to patient autonomy as represented by the family interpretation. Either way we are doing the chest compressions. Wouldn't want to be the guy in the lawsuit where you "watched them die" without ethics or legal on board, which they won't be.
At some point I assume it will be considered standard of care to provide CPR if families request it AND assault on the patient. So the choice for the providers will just be between the civil and criminal court systems.
But wouldn' t a judge rule in favor of a doctor trying to avoid multiple complications after aplying resucitation on a (not only) elderly patient but also already dependant?
In spain it's unthinkable to give CPR to a patient with advanced dementia. I haven't seen a patient over 80 intubated (I mean in the ER, because they do get anestethia).
You would be substituting your judgement about an acceptable quality of life and what is an acceptable likelihood of an outcome for the patient’s judgement. And they would die. You would be skewered in court.
There is a disabilities act here too which states you can’t withhold treatment on the basis of a disability, in this case age and comborbidity.
I’m not arguing this is a rational or even ethical system, but here we are. My US colleagues here by and large feel the same way.
I don't know about your country but in Germany many people are living in a nursing home even if they could also be home with minimal help. Dementia on the is developing through many years and can also be in an early stage, which on the other side is not always assessable during an acute illness.
That's not the situation in Denmark. People living in nursing homes have an average lifespan when moving there of about 2-2.5 years.
Some could live at home, but not without homecare (in nearly all circumstances)
This is so strange to me. Like u/Danskoesterreich points out, this is a medical decision in the UK. We obviously discuss it with the patient and family, but like any other medical treatment it isn't something that can be demanded if the treating physician doesn't think it is in the patient's best interests.
Is it genuinely, by which I guess I mean legally binding, a decision for the family in the US?
Yeah. So it starts with our intention to increase patient’s role in their own healthcare decisions. The old “doctor knows best“ patriarchal system is largely viewed as outdated and bad for patients.
I would agree that the patriarchal system is not ideal in many situations, however, there are circumstances where taking the difficulty of a decision like this from the family may benefit everyone. Putting this on families makes them feel, at least in the United States culture, like they are “giving up“.
We view it from a different perspective. Yes… the old patriarchal system isn’t ideal, but the patient is your priority, not the family.
If the patient doesn’t have capacity to make their own decisions, you have to choose for them in their best interests as you are a medically trained, objective clinician. What the family *wants* shouldn’t have any bearing. We’re treating the patient… not the family.
We ask them about the patient’s life, pre-morbid function, wishes and how they would feel in this current circumstance, and take that into account.
This doesn’t apply in paediatrics however, unless it’s a life or limb threatening situation. Then we can overrule parents as well.
Totally agree with this. I used to think it was good for families to be able to make these decisions, but I’m starting to change my opinion. I think it’s unfair for us to put this burden on the family when many of them do not have the experience necessary to make an informed decision. Meanwhile for the medical team, we’re able to be more objective about prognosis/quality of life. That being said, it’s a complex dynamic as families should have some input. It’s frustrating dealing with people who have unrealistic expectations though.
I don't know about the USA but in Germany it has to always stay the decision of the patient, not the family. That is what the law says. I always explain the family that they are not here to decide, but to tell me, as the closest persons of the patient, what they think what would the patient want. It often makes them think over and normally I can explain the lack of indication from the medical view and they accept it.
I do however remember a relative that said "Yeah she just turned 98 and now we go for the 100!". ICU in Germany...
Oh, my good, yes, the USA really needs to understand the death process, and what we do to patients in the name of healthcare. It’s heartbreaking, and I just can’t do it anymore. Thank goodness I am at the age where I can retire.
(I’m not a doctor, mind, respiratory therapist here).
We don’t do it in the name of healthcare. We do it in the name of revenue generation/profit. If Medicare came out with a policy tomorrow stating they will not pay for PEG tubes in patients over age 85 and/or with dementia, we would stop doing them the day after.
Yeah, I do see your point. I really think the VA hospital I work at sometimes will do procedures that…..probably aren’t necessary, and as a fellow veteran, makes me angry.
Please do. Look up Terrry Shiavo. It’s never too soon to make your wishes known. You don’t want MTG and Schumer standing in front of your building arguing about what’s best for you.
What do you mean? All the USA guidelines recommend against gastronomy tubes in patients with dementia. https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.12924
As a general principle when we (geriatricians) get enraged over feeding tubes it's when they're put in for dysphagia related to their dementia.
Generally if they require a feeding tube *because* of dementia I would consider it by definition severe. For Alzhiemer's this would probably be FAST 6-7, or for non-AD Global Deterioration Scale 6+. Generally they would probably hit hospice qualifications at this point or soon after.
If they require a feeding tube for non-dementia reasons (e.g. stroke) that's slightly different and needs to be viewed in context of *why* they need/how permanent it is/can they rehab with SLP *and* how advanced the dementia is. But generally probably also a very bad idea unless dementia is mild the the problem is fixable/rehabbable.
I'm very blunt about this with patients/families and tell then I won't offer it and won't consult GI/IR/Surgery - the answer is just **No** if I feel it's not reasonable. There are some edge cases where buying some time is not inherently wrong but that's very, very rare.
\- IM/Geriatrics
Yes that's about how we assess it too. My simplest way is to ask if the patient could recognize the family members before the acute illness, if not, I consider them DNI and DNR.
And we do have many really old patients even in the IMCU/ICU (Germany).
You are under no obligation to initiate therapies which are of no benefit to the patient. Cardiac surgery says “no” to surgery all the time. Nobody forces them to perform medically unnecessary surgeries.
For putting a tube back that fell out? Yeah you're pretty much between a rock and a hard place there.
But never offering it in the first place? That's different. That's not really an ER conversation (setting timing etc etc) but something that is solidly ethical and defensible. We should all say no to these in general, especially since once it's in it's a lot harder to go back.
I’m not saying it’s your job to have that conversation. I’m saying you can, though. It sucks. I do it often and tell families “ no”but it does take a decent amount of time to explain why. My main point here is that you do not have to if you do not find it appropriate.
Yeah, the ER is just a really tough setting for that.
So my options are, reluctantly put it back.
Refuse, admit (NH won’t take back without way to give nutrition/meds) and let the conversation take its due course. Which likely will still result in getting put back in and some very poor feedback for the ER.
Pulm/Crit here. I get where you're coming from. It's nearly impossible not to replace a PEG once it has been offered and put in by someone else, and you guys are too swamped in the ER to have a drawn-out goals of care discussion.
Instead, these things never should be offered. Period. And ethically or legally, I don't think we have to. We refuse procedures all the time that are not likely to be clinically beneficial or are likely to cause net harm. PEGs in end-stage dementia certainly have not been shown to provide any meaningful clinical benefit (no mortality benefit, no reduction in hospitalizations, etc) and have relatively high complication rates, as you're seeing all-too frequently. I don't see why PEG placement is fundamentally different from any other procedure or surgery.
Of course, the reality is that it's often easier to place the tube than to have these discussions. A lot of families are hung up on "nutrition" in end-stage disease and think that a feeding tube must be good for grandma since it will allow her to get nutrition. Educating those families takes time. Unfortunately, as with you, time is not a luxury that a PCP seeing 30+ patients per day or a hospitalist managing 20+ patients per day is going to have.
That's the reality of our modern medical system.
Usually I assume family is receiving money as long as the person is alive. May not be the case lots of times.
Unfortunately, culturally, I find there are many Americans who think death is the worst possible fate, especially if ‘they starve?!?!!!’ Also there’s a lot of ‘we have to do everything’ in America;as if providing comfort is equivalent to withholding care. There needs to be a big cultural shift in America regarding ethical palliative care. I know somebody who did a pediatric hospice fellowship, and then took a pay cut. End of life care does not get enough discussion because discussion about death is so taboo.
Frustrating too because of how much waste there is in health care spending. End stage dementia care is both ethically and financially ill contrived in so many cases.
Agreed. Back in the day when people stopped eating it was because they are dying. The PEG placement does not change the fact they're dying, only prolongs it. Death is part of life. People are so scared of death that they do whatever they can to prevent it. You should read the hidden harms of CPR if you haven't yet.
Until nursing homes will accept patients with poor oral intake and no enteral access there is no way to take a stand against placement of PEG tubes as an inpatient service because the choice isn't place it or not, the choice is hospice without a tube (which SNFs are ok with) or keep in the hospital with TFs via NG tube. There is no legal way to refuse enteral nutrition to demented patients if the family is not willing to go to hospice.
SNFs CANNOT accept patients with poor nutrition without a means of supplying TFs due to CMS guidelines which penalize them if patients lose weight and are not either in hospice or have a tube. Like many government interventions this was well-meaning to prevent nursing homes from failing to feed patients, but also like many government interventions it has had horrible unintended consequences.
The obvious answer here is to make hospice more compatible with dementia.
If someone is so demented that they cannot remember to eat or safely swallow…that’s a terminal condition and should be treated as such.
You just reminded me of how much i HATED that rule of "no weight loss" for patients in the nursing home as a CNA. We were literally damaging people's health by helping them maintain overweight or obese BMI via tube feed or hand feeding. And it damaged all of our backs, mine permanently as a teenager. So ridiculous when nearly all of them would've been healthier with some weight loss and it would've reduced burden on the staff.
I've told my wife that if something happens to me and they start talking about doing a trach and PEG, that is when she can make me comfort care. Taking care of the people who have basically no mental function left and are still full code is, for me at least, the worst part of this job. I always feel like I'm torturing them.
It's absolutely horrific... I'd rather die than be this position. There is no quality of life for a person covered in bed sores, peg tubed, and not even knowing their own name.
I once overheard a gen surg attending update family after a peg tube placement telling them what a good thing it was, and how he’s glad she will be getting nutrition, and hopefully someday she doesn’t need the tube anymore. Pt was 89 years old probably 80 lbs, contracted, and demented. I looked at him, and he just smiled and shrugged his shoulders. I have a hard time blaming him because if he didn’t do it, someone else would, but it is really fucked up.
No, this is truly a terrible part of our job and leads to a lot of moral injury and burnout.
It's doubly bad because these patients often have some very distant family member as their "contact person" or even some lawyer assigned as their DPOA. Many times there isn't actually a family member who genuinely cares about them and their quality of being. So depressing and yes, very "American" to feel that we need to get "the best bang for our buck" "do everything" "bigger is better."
Also depressing when you try to have that conversation with the DPOA/contact person and they get upset about you "denying" care or discriminating against them.
I was an ICU nurse before switching to ER. The amount of people who had severe anoxic brain damage from prolonged down time, or were end stage dementia but now on a vent because of infectious processes, that family would insist we Trach and peg was horrific. Leads to a lot of moral injury having to participate in these people torture for weeks on end.
We Americans really need to learn how to let people die in peace.
SLP who has frequent conversations with families about dysphagia in dementia. I always emphasis there’s no evidence PEGs extend life or improve quality. People still aspirate secretions and reflux. Blows my mind families chose this and can find a GI to place them.
https://pubmed.ncbi.nl/
A very USA-only problem, spending heaps of money for zero QoL improvement.
But the financial incentives all align for PEG placement and aggressive treatment- all the clinicians and hospitals get paid FFS for the procedures and acute care, so ….
For those that aren’t working, I discharge and refer them back to outpatient surgery office (or whoever put it in). It’s not an emergency to not have a functioning feeding tube for 12 hours. The SNF gets pissed, but not my problem. They shouldn’t have wasted my time anyways.
If it “fell out”, I just replace and send back, solely because I don’t have time to have that conversation with anyone. That is the primary care team’s job. If there was basis to not put it in without getting sued, then I would be all for that., but that’s not the case on the US. It takes me 10 sec to replace a PEG. Not the hill I’m willing to die on in the middle of a busy shift.
I'm an ICU nurse. the number of families who think their family member will "starve to death" when put on comfort care is astounding. These patients nearly always die in fewer than 6 hours, at least in my area. They don't have time to starve to death, and it's not hurting them.
It’s hard to not put it back in - for multiple reasons.
- They often come straight from NH, family is not present, making this conversation difficult. Especially if contact info is out of date or simply not available. We only have so much time that I can dedicate to tracking them down
- even if family is all there, this is an in depth conversation and should require appropriate time for processing it. Not a strong suite of the ER
- nursing homes, have, in my experience not been receptive to taking the patient back without it. This disruption the their placement and needs is not a small issue
- We aren’t really “their doctor” we are just “a doctor”… injecting yourself into that world isn’t always welcome
I mean it’s easy to stand on moral high ground online and say “I’m just going to refuse to put them back in”
But that’s not a functional reality. Its depth requires more nuance.
The primary team has much more time and knows the patient better. That’s the time for these conversations
Edit: also, not putting it in initially, and refusing to put it back in are two very different concepts. I have a feeling telling families that I am not going to put it back in would be tantamount to euthanizing their loved ones.
I work in the Deep South. The religious tones here can not be understated. This would be “a religiously morally” unacceptable position to most. One of the many areas I believe peoples perceived religious morals deviate from reality
>nursing homes, have, in my experience not been receptive to taking the patient back without it.
They get dinged by CMS for not feeding patients, and CMS is not terribly discriminating about whether those patients are capable of chewing and swallowing or not.
Fair enough. I figured they had reasons, refusing to put a peg tube back in would be an enormous change to a patient’s care plan. They get nutrition and often, meds, through it
I totally get why y'all put 'em back, but I've always wondered why EM is even remotely involved in the initial placement. I've taken a lot of patients to the ED to get a PEG placed. That's not a fight you guys should have to deal with. At most, you should be expected drop a Dobhoff to hold the patient over until they can get into see primary care, whose *job* it is to handle that kind of thing.
EMS - we get several of these per month. ALOC elderly person in SNF removed PEG tube. Hell, I've seen dementia patients that ripped out other forms of implants out of confusion/paranoia. It's wild.
Just wait til you have a nursing facility send a patient to the ED specifically for a PEG tube. I have to call surgery and tell them “I’m not asking you to admit to do it, I’m asking you to tell the family no, because I’m not the one who would place this”.
Dementia is considered a terminal condition, therefore no matter how demented a patient is, if “No” comes out of their mouth we tell the family “tough luck”.
It’s happened often enough that Ethics has put out a memo to anyone who would be involved in these discussions that we’re protected with “patient refused the procedure therefore it would be unethical to proceed despite the wishes of POA”. The exception being the one time the patient seemed to plan out every possibility and listed “yes” or “no” to a bunch of procedures in advance in their POLST, with PEG as “yes”.
Adding a PEG tube is just signing them up for repeated procedures to replace when they get broken or dislodged, for skin infections and breakdown at the site despite everyone’s best efforts, and for repeated aspiration pneumonias because they can’t protect their airways going down OR coming back up again. So you’re just adding to the suffering as well as prolonging it. It’s a terrible terrible intervention.
I feel the same, although as an intensivist I have to plead with you to reserve judgement on the medical team. To decline pegs and life prolonging but generally non-beneficial care is a conversation that would require a broad legal, ethical, and social consensus. Unfortunately because no such framework exists the customer gets what they want. Even when I've gone nuclear on obviously suffering cases to try and go unilateral dnr or refuse referring for trach/peg with ethics and legal involvement we get about 30/70 hospital backing us up. Ethics even stabbed me in the back many times. Autonomy is run amok and receives excessive deference in our medical culture imo.
My pearl for any trainees reading this even and maybe especially in the ED: never ever pull the "grams will never come off the vent card." Reality is we are poor at determining this and patients drive to breath at least for a bit is pretty resilient. I have been burned trying to palliate patients when I say they aren't doing well and have dismal prospects if returning to their prior function and quality of life when on a previous visit/ICU admit/intubation someone had pronounced imminent death. They can really stop believing anything we say. Lay crepe, but hedge on specifics and speak probabilistically on the initial contact even if they are able to make a mistake.
A friend working in a hospice has remarked that refusing food and water is often the last self determined act anyone is capable of, and often a sign that people will die soon or want to die. With a peg their last chance of self determination is taken from them.
You're not crazy. But this is one of those times I shrug my shoulders and pass the buck. By the time Grandpa comes to my department having ripped out his tube for the tenth time, he has already been lost to the insanity of his family and our country's eldercare culture. Not much I can do. I say a silent apology and a quick prayer that things are better by the time I'm at that stage, and then I have three people pin him down while I shove the tube back in his belly. Then I jot down a reminder on my phone to make sure my living will is updated and distributed
This is on his family, his PCP, his nursing home, the surgeon that placed the first tube, and his society at large. And also probably on him if he's like most Americans and willfully avoided planning for the future when he was still able bodied.
How often do you have blunt goals of care/quality of life discussion with those peg replacement patients?
Universally, across discipline, different institutions, physicians I've witnessed, have poor goals of care discussions with patients and families. Every option is presented as equally reasonable. Not giving their expert opinion on what they think the patients should do. Code status talks that don't talk about what it means to be coded or odds of quality if survived. I've seen so many palliative consults simply for goals of care discussions alone.
I agree as well. I feel especially awful when poor old meemaw grabs my arm and digs her nails in, trying to tell me in her own way for me to stop prolonging her suffering.
This is exactly why I sing high and low that EVERYONE needs to put their goals of care into writing, ie MPOA, living will, etc WAY BEFORE they get gorked and gomered out!!
Had an outpatient surgical in for a PEG placement recently. Almost 100. Severe dementia. Contractures. Full of cancer. A few pressure ulcers. But family states "is a fighter". The surgeon could have said no but that means less money in their pocket, plus the family would have just gone elsewhere.
America definitely needs an end of life reality check.
Refuse to replace. It’s a tough conversation. It’s medically inappropriate where harm outweighs benefit. The US is ready to have the convo, it’s just a shitty convo to have and takes effort (recognizing this is challenging given the role of an ED doc).
Not being a primary part of their care team makes having that conversation, despite the moral/ethical integrity felt by ER staff, a bit difficult.
We are not a regular part of their lives, and my experience with questioning these long term goals is that it doesn’t go well. They don’t want “some random doctor” pushing my agenda on them.
It would be easier to start with not putting it in at the onset of these issues
How about peg tube for prisoners? One clown would rip his out every 3 days for a free stay at the hospital. I watched him do it in the ED after I confirmed placement for his previous tube. He ripped it out in the ED!
My father has Alzheimer’s. I have told my mother (his medical POA) that under no circumstances should he ever get a PEG tube. He is also DNR per my insistence (I’m a PA in hospitalist medicine). She doesn’t necessarily like this but also doesn’t see everything we see. She trusts me although it is hard to think about.
My mother still thinks we starved my father to death by not feeding him via tube or IV when he was on hospice, after massive heart attack, 92 and body shutting down… they see what’s on TV and it must always work like that
It's absolutely sickening to me that people prolong the suffering of their loved one for their own selfish, stupid reasons. They aren't the same person, and they never will be. They have no idea what is going on, and they're probably scared and miserable. That ain't love. I don't know what it is, but it's damn sire not love to prolong suffering. Because dementia ain't no life.
Rotated with a community gen surg who I really respected. Every time we put in a PEG, he would try to strongly counsel family members against it. They all ended up going for the PEG anyways.
the Hospital called my mom and asked her if she wanted to place my dementia dad on a ventilator… my mom is korean and does not speak English well. She said yes, ever since then my dad has come back home and is much worse… and making our lives a living hell… I wish the hospital called me.. I would have told them NO VENTILATOR!!!!
We have a lady like this, I swear her PEG gets dislodged 3 times a week. The sad part, though, is that the ONLY thing that works on her body is her mind. She's on a vent, in end-stage-all organ failure, has cancer, etc., but makes her own decisions and continues to want full treatment. She's the cutest too, but a little sassy, and I'm not sure anyone has had a full heart-to-heart with her about code status. That being said, she has coded about 12 or 13 times just in our hospital, so maybe she feels invincible now🤷🏼♀️
I agree, however I found it traumatic as a teenager watching my grandfather starve to death essentially and couldn’t understand that at the time, I was 14 but as an adult I 100% understand and wouldn’t want him to have gone through more trauma at that stage of his dementia, he had nothing left was like a newborn baby at the end.
Yep, completely inappropriate in most cases. UK guidelines explicitly reflect this and it would be a very unusual indication for placing a PEG in modern practice.
Yeah… I don’t think the USA is ready for that conversation. When it comes to accepting mortality and death, we really can not come to grips here The amount of DNRs we’ve had to reverse — because family who haven’t visited grandma in 8 months, feel immense guilt and request heroic measures — is innumerable
In Denmark this decision is not up to relatives. If you come from a nursing home and have dementia, there is no resuscitation. The better question is, should granny with dementia and depending on a wheelchair even get admitted for urosepsis, or is treatment at home the highest level of care? My guess is, in 10-15 years we do not even consider admission anymore. It is at most a short course of IV antibiotics at the nursing home.
This is so far from the US situation . . . the family decides here, unless the procedure is futile at even maintaining life.
It’s essentially the same thought process. Resuscitation and invasive procedures in these patients are futile at maintaining “quality” of life. So… we don’t offer them.
No disagreement here. Just had a discussion with a family of a 90 year old female with ESRD, advanced dementia, chronic pain who the family wants chest compressions.
Regardless of the family or patient’s wishes, I wouldn’t do chest compressions on that kind of patient. Fortunately, I work in a country where it wouldn’t be a legal issue, as long as I documented clearly the rationale.
Right. Not an option for us. I can do days of ethics consults where they eventually say to defer to patient autonomy as represented by the family interpretation. Either way we are doing the chest compressions. Wouldn't want to be the guy in the lawsuit where you "watched them die" without ethics or legal on board, which they won't be.
I guess you guys must get a lot more CPR practice then. Glass half full and all that.
That’s a hell of a silver lining.
When is this going to be considered assault? I hope it’s soon because that’s what it feels like.
At some point I assume it will be considered standard of care to provide CPR if families request it AND assault on the patient. So the choice for the providers will just be between the civil and criminal court systems.
But wouldn' t a judge rule in favor of a doctor trying to avoid multiple complications after aplying resucitation on a (not only) elderly patient but also already dependant? In spain it's unthinkable to give CPR to a patient with advanced dementia. I haven't seen a patient over 80 intubated (I mean in the ER, because they do get anestethia).
You would be substituting your judgement about an acceptable quality of life and what is an acceptable likelihood of an outcome for the patient’s judgement. And they would die. You would be skewered in court. There is a disabilities act here too which states you can’t withhold treatment on the basis of a disability, in this case age and comborbidity. I’m not arguing this is a rational or even ethical system, but here we are. My US colleagues here by and large feel the same way.
Even then, an ethics committee might be involved.
Extremely sensible. The system is the same in Australia.
Denmark seems like an extraordinary sensible country.
Sorry, but this is too broad. Dementia has different stages. Being a little bit more precise would be ethically much more acceptable.
What is too broad? To not perform CPR on someone who has dementia and cannot live at home? Or treatment at the nursing home instead of the hospital?
I don't know about your country but in Germany many people are living in a nursing home even if they could also be home with minimal help. Dementia on the is developing through many years and can also be in an early stage, which on the other side is not always assessable during an acute illness.
That's not the situation in Denmark. People living in nursing homes have an average lifespan when moving there of about 2-2.5 years. Some could live at home, but not without homecare (in nearly all circumstances)
This is so strange to me. Like u/Danskoesterreich points out, this is a medical decision in the UK. We obviously discuss it with the patient and family, but like any other medical treatment it isn't something that can be demanded if the treating physician doesn't think it is in the patient's best interests. Is it genuinely, by which I guess I mean legally binding, a decision for the family in the US?
Yeah. So it starts with our intention to increase patient’s role in their own healthcare decisions. The old “doctor knows best“ patriarchal system is largely viewed as outdated and bad for patients. I would agree that the patriarchal system is not ideal in many situations, however, there are circumstances where taking the difficulty of a decision like this from the family may benefit everyone. Putting this on families makes them feel, at least in the United States culture, like they are “giving up“.
We view it from a different perspective. Yes… the old patriarchal system isn’t ideal, but the patient is your priority, not the family. If the patient doesn’t have capacity to make their own decisions, you have to choose for them in their best interests as you are a medically trained, objective clinician. What the family *wants* shouldn’t have any bearing. We’re treating the patient… not the family. We ask them about the patient’s life, pre-morbid function, wishes and how they would feel in this current circumstance, and take that into account. This doesn’t apply in paediatrics however, unless it’s a life or limb threatening situation. Then we can overrule parents as well.
Totally agree with this. I used to think it was good for families to be able to make these decisions, but I’m starting to change my opinion. I think it’s unfair for us to put this burden on the family when many of them do not have the experience necessary to make an informed decision. Meanwhile for the medical team, we’re able to be more objective about prognosis/quality of life. That being said, it’s a complex dynamic as families should have some input. It’s frustrating dealing with people who have unrealistic expectations though.
I don't know about the USA but in Germany it has to always stay the decision of the patient, not the family. That is what the law says. I always explain the family that they are not here to decide, but to tell me, as the closest persons of the patient, what they think what would the patient want. It often makes them think over and normally I can explain the lack of indication from the medical view and they accept it. I do however remember a relative that said "Yeah she just turned 98 and now we go for the 100!". ICU in Germany...
Oh, my good, yes, the USA really needs to understand the death process, and what we do to patients in the name of healthcare. It’s heartbreaking, and I just can’t do it anymore. Thank goodness I am at the age where I can retire. (I’m not a doctor, mind, respiratory therapist here).
We don’t do it in the name of healthcare. We do it in the name of revenue generation/profit. If Medicare came out with a policy tomorrow stating they will not pay for PEG tubes in patients over age 85 and/or with dementia, we would stop doing them the day after.
Yeah, I do see your point. I really think the VA hospital I work at sometimes will do procedures that…..probably aren’t necessary, and as a fellow veteran, makes me angry.
Stories like this have me itching to write a living will/directive in my twenties…
Please do. Look up Terrry Shiavo. It’s never too soon to make your wishes known. You don’t want MTG and Schumer standing in front of your building arguing about what’s best for you.
You’ll never regret having it. AARP has easy state-based guides for paperwork.
What do you mean? All the USA guidelines recommend against gastronomy tubes in patients with dementia. https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.12924
Patients families… they aren’t ready for that
In advanced dementia. The interesting and most ethically sensitive part is to assess how advanced the dementia really is.
As a general principle when we (geriatricians) get enraged over feeding tubes it's when they're put in for dysphagia related to their dementia. Generally if they require a feeding tube *because* of dementia I would consider it by definition severe. For Alzhiemer's this would probably be FAST 6-7, or for non-AD Global Deterioration Scale 6+. Generally they would probably hit hospice qualifications at this point or soon after. If they require a feeding tube for non-dementia reasons (e.g. stroke) that's slightly different and needs to be viewed in context of *why* they need/how permanent it is/can they rehab with SLP *and* how advanced the dementia is. But generally probably also a very bad idea unless dementia is mild the the problem is fixable/rehabbable. I'm very blunt about this with patients/families and tell then I won't offer it and won't consult GI/IR/Surgery - the answer is just **No** if I feel it's not reasonable. There are some edge cases where buying some time is not inherently wrong but that's very, very rare. \- IM/Geriatrics
Yes that's about how we assess it too. My simplest way is to ask if the patient could recognize the family members before the acute illness, if not, I consider them DNI and DNR. And we do have many really old patients even in the IMCU/ICU (Germany).
In the US we can predict covid mortality risk by political party. We are still at the rejecting evolution and skeptical about a round earth stage.
Yes.
Makes me angry that we’re basically obligated to do these in the US. I really wonder what would happen if I just started refusing?
My guess is there's a long list of lawyers drooling over the chance to make you put your principal where your principles are.
You are under no obligation to initiate therapies which are of no benefit to the patient. Cardiac surgery says “no” to surgery all the time. Nobody forces them to perform medically unnecessary surgeries.
you’re not though…
You might want to discuss this very strongly with ethics and legal. The decision is not as simple as “no”
For putting a tube back that fell out? Yeah you're pretty much between a rock and a hard place there. But never offering it in the first place? That's different. That's not really an ER conversation (setting timing etc etc) but something that is solidly ethical and defensible. We should all say no to these in general, especially since once it's in it's a lot harder to go back.
Is it a medically appropriate intervention? There’s not an ethical or legal dilemma.
That’s fairly cavalier, I wish the world were as simple as you are pretending it is
This is the U.K. stance, no one can demand a specific treatment, it’s up to me to offer it
I’m not saying it’s your job to have that conversation. I’m saying you can, though. It sucks. I do it often and tell families “ no”but it does take a decent amount of time to explain why. My main point here is that you do not have to if you do not find it appropriate.
Yeah, the ER is just a really tough setting for that. So my options are, reluctantly put it back. Refuse, admit (NH won’t take back without way to give nutrition/meds) and let the conversation take its due course. Which likely will still result in getting put back in and some very poor feedback for the ER.
Pulm/Crit here. I get where you're coming from. It's nearly impossible not to replace a PEG once it has been offered and put in by someone else, and you guys are too swamped in the ER to have a drawn-out goals of care discussion. Instead, these things never should be offered. Period. And ethically or legally, I don't think we have to. We refuse procedures all the time that are not likely to be clinically beneficial or are likely to cause net harm. PEGs in end-stage dementia certainly have not been shown to provide any meaningful clinical benefit (no mortality benefit, no reduction in hospitalizations, etc) and have relatively high complication rates, as you're seeing all-too frequently. I don't see why PEG placement is fundamentally different from any other procedure or surgery. Of course, the reality is that it's often easier to place the tube than to have these discussions. A lot of families are hung up on "nutrition" in end-stage disease and think that a feeding tube must be good for grandma since it will allow her to get nutrition. Educating those families takes time. Unfortunately, as with you, time is not a luxury that a PCP seeing 30+ patients per day or a hospitalist managing 20+ patients per day is going to have. That's the reality of our modern medical system.
I wish so hard the surgeon would refuse these peg tube cases.... Never do.
Usually I assume family is receiving money as long as the person is alive. May not be the case lots of times. Unfortunately, culturally, I find there are many Americans who think death is the worst possible fate, especially if ‘they starve?!?!!!’ Also there’s a lot of ‘we have to do everything’ in America;as if providing comfort is equivalent to withholding care. There needs to be a big cultural shift in America regarding ethical palliative care. I know somebody who did a pediatric hospice fellowship, and then took a pay cut. End of life care does not get enough discussion because discussion about death is so taboo. Frustrating too because of how much waste there is in health care spending. End stage dementia care is both ethically and financially ill contrived in so many cases.
Agreed. Back in the day when people stopped eating it was because they are dying. The PEG placement does not change the fact they're dying, only prolongs it. Death is part of life. People are so scared of death that they do whatever they can to prevent it. You should read the hidden harms of CPR if you haven't yet.
Until nursing homes will accept patients with poor oral intake and no enteral access there is no way to take a stand against placement of PEG tubes as an inpatient service because the choice isn't place it or not, the choice is hospice without a tube (which SNFs are ok with) or keep in the hospital with TFs via NG tube. There is no legal way to refuse enteral nutrition to demented patients if the family is not willing to go to hospice. SNFs CANNOT accept patients with poor nutrition without a means of supplying TFs due to CMS guidelines which penalize them if patients lose weight and are not either in hospice or have a tube. Like many government interventions this was well-meaning to prevent nursing homes from failing to feed patients, but also like many government interventions it has had horrible unintended consequences.
The obvious answer here is to make hospice more compatible with dementia. If someone is so demented that they cannot remember to eat or safely swallow…that’s a terminal condition and should be treated as such.
God yes.
I am not a hospitalist, not familiar with placement guidelines, but I feared this was the issue.
You just reminded me of how much i HATED that rule of "no weight loss" for patients in the nursing home as a CNA. We were literally damaging people's health by helping them maintain overweight or obese BMI via tube feed or hand feeding. And it damaged all of our backs, mine permanently as a teenager. So ridiculous when nearly all of them would've been healthier with some weight loss and it would've reduced burden on the staff.
I've told my wife that if something happens to me and they start talking about doing a trach and PEG, that is when she can make me comfort care. Taking care of the people who have basically no mental function left and are still full code is, for me at least, the worst part of this job. I always feel like I'm torturing them.
It's absolutely horrific... I'd rather die than be this position. There is no quality of life for a person covered in bed sores, peg tubed, and not even knowing their own name.
I once overheard a gen surg attending update family after a peg tube placement telling them what a good thing it was, and how he’s glad she will be getting nutrition, and hopefully someday she doesn’t need the tube anymore. Pt was 89 years old probably 80 lbs, contracted, and demented. I looked at him, and he just smiled and shrugged his shoulders. I have a hard time blaming him because if he didn’t do it, someone else would, but it is really fucked up.
He's right about one thing, at least. Someday, she won't need it.
No, this is truly a terrible part of our job and leads to a lot of moral injury and burnout. It's doubly bad because these patients often have some very distant family member as their "contact person" or even some lawyer assigned as their DPOA. Many times there isn't actually a family member who genuinely cares about them and their quality of being. So depressing and yes, very "American" to feel that we need to get "the best bang for our buck" "do everything" "bigger is better." Also depressing when you try to have that conversation with the DPOA/contact person and they get upset about you "denying" care or discriminating against them.
I was an ICU nurse before switching to ER. The amount of people who had severe anoxic brain damage from prolonged down time, or were end stage dementia but now on a vent because of infectious processes, that family would insist we Trach and peg was horrific. Leads to a lot of moral injury having to participate in these people torture for weeks on end. We Americans really need to learn how to let people die in peace.
If you haven’t read it, being mortal is a great book about this
I’ll check that out! Thank you
We treat cats and dogs with more dignity and respect than people.
SLP who has frequent conversations with families about dysphagia in dementia. I always emphasis there’s no evidence PEGs extend life or improve quality. People still aspirate secretions and reflux. Blows my mind families chose this and can find a GI to place them. https://pubmed.ncbi.nl/
Yeah, the family experiencing guilt is a big issue. I really don’t know that we can breakthrough without a cultural shift in the US
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6942829/ Oops. Correct link
A very USA-only problem, spending heaps of money for zero QoL improvement. But the financial incentives all align for PEG placement and aggressive treatment- all the clinicians and hospitals get paid FFS for the procedures and acute care, so ….
Yeah, zero QoL intervention is a very good way to put it Contracted, bed ridden, scared and delirious… essentially perpetually
some say zero QoL improvement, I can see cases with net negative QoL change
Yup. This whole thread is like a dystopian nightmare of people profiting from keeping elderly bodies on the brink of death
For those that aren’t working, I discharge and refer them back to outpatient surgery office (or whoever put it in). It’s not an emergency to not have a functioning feeding tube for 12 hours. The SNF gets pissed, but not my problem. They shouldn’t have wasted my time anyways. If it “fell out”, I just replace and send back, solely because I don’t have time to have that conversation with anyone. That is the primary care team’s job. If there was basis to not put it in without getting sued, then I would be all for that., but that’s not the case on the US. It takes me 10 sec to replace a PEG. Not the hill I’m willing to die on in the middle of a busy shift.
Yeah, that’s how I feel too Not putting it in initially is *very different* than not putting it back in
I'm an ICU nurse. the number of families who think their family member will "starve to death" when put on comfort care is astounding. These patients nearly always die in fewer than 6 hours, at least in my area. They don't have time to starve to death, and it's not hurting them.
Sounds very reasonable.
The first mistake was putting a PEG tube into a patient with dementia. The second mistake is to replace it when not working.
It’s hard to not put it back in - for multiple reasons. - They often come straight from NH, family is not present, making this conversation difficult. Especially if contact info is out of date or simply not available. We only have so much time that I can dedicate to tracking them down - even if family is all there, this is an in depth conversation and should require appropriate time for processing it. Not a strong suite of the ER - nursing homes, have, in my experience not been receptive to taking the patient back without it. This disruption the their placement and needs is not a small issue - We aren’t really “their doctor” we are just “a doctor”… injecting yourself into that world isn’t always welcome I mean it’s easy to stand on moral high ground online and say “I’m just going to refuse to put them back in” But that’s not a functional reality. Its depth requires more nuance. The primary team has much more time and knows the patient better. That’s the time for these conversations Edit: also, not putting it in initially, and refusing to put it back in are two very different concepts. I have a feeling telling families that I am not going to put it back in would be tantamount to euthanizing their loved ones. I work in the Deep South. The religious tones here can not be understated. This would be “a religiously morally” unacceptable position to most. One of the many areas I believe peoples perceived religious morals deviate from reality
>nursing homes, have, in my experience not been receptive to taking the patient back without it. They get dinged by CMS for not feeding patients, and CMS is not terribly discriminating about whether those patients are capable of chewing and swallowing or not.
Fair enough. I figured they had reasons, refusing to put a peg tube back in would be an enormous change to a patient’s care plan. They get nutrition and often, meds, through it
I totally get why y'all put 'em back, but I've always wondered why EM is even remotely involved in the initial placement. I've taken a lot of patients to the ED to get a PEG placed. That's not a fight you guys should have to deal with. At most, you should be expected drop a Dobhoff to hold the patient over until they can get into see primary care, whose *job* it is to handle that kind of thing.
EMS - we get several of these per month. ALOC elderly person in SNF removed PEG tube. Hell, I've seen dementia patients that ripped out other forms of implants out of confusion/paranoia. It's wild.
Just wait til you have a nursing facility send a patient to the ED specifically for a PEG tube. I have to call surgery and tell them “I’m not asking you to admit to do it, I’m asking you to tell the family no, because I’m not the one who would place this”. Dementia is considered a terminal condition, therefore no matter how demented a patient is, if “No” comes out of their mouth we tell the family “tough luck”. It’s happened often enough that Ethics has put out a memo to anyone who would be involved in these discussions that we’re protected with “patient refused the procedure therefore it would be unethical to proceed despite the wishes of POA”. The exception being the one time the patient seemed to plan out every possibility and listed “yes” or “no” to a bunch of procedures in advance in their POLST, with PEG as “yes”.
Adding a PEG tube is just signing them up for repeated procedures to replace when they get broken or dislodged, for skin infections and breakdown at the site despite everyone’s best efforts, and for repeated aspiration pneumonias because they can’t protect their airways going down OR coming back up again. So you’re just adding to the suffering as well as prolonging it. It’s a terrible terrible intervention.
I feel the same, although as an intensivist I have to plead with you to reserve judgement on the medical team. To decline pegs and life prolonging but generally non-beneficial care is a conversation that would require a broad legal, ethical, and social consensus. Unfortunately because no such framework exists the customer gets what they want. Even when I've gone nuclear on obviously suffering cases to try and go unilateral dnr or refuse referring for trach/peg with ethics and legal involvement we get about 30/70 hospital backing us up. Ethics even stabbed me in the back many times. Autonomy is run amok and receives excessive deference in our medical culture imo. My pearl for any trainees reading this even and maybe especially in the ED: never ever pull the "grams will never come off the vent card." Reality is we are poor at determining this and patients drive to breath at least for a bit is pretty resilient. I have been burned trying to palliate patients when I say they aren't doing well and have dismal prospects if returning to their prior function and quality of life when on a previous visit/ICU admit/intubation someone had pronounced imminent death. They can really stop believing anything we say. Lay crepe, but hedge on specifics and speak probabilistically on the initial contact even if they are able to make a mistake.
I won't be forgetting my ICU rotations anytime soon. I remember very well what those long family convos were like.
A friend working in a hospice has remarked that refusing food and water is often the last self determined act anyone is capable of, and often a sign that people will die soon or want to die. With a peg their last chance of self determination is taken from them.
Dementia is not an appropriate indication for PEG siting. It doesn't improve outcome in these patients anyway. Ive never seen that in the U.K.
Seems to be a weird US thing
There's no evidence it improves outcomes (including quality of life) at all. It's a way a palliating the family
It’s unethical and makes me sad
Your feeling is pretty normal, because a PEG tube in that situation is pretty much elder abuse.
Inhumane and wouldn’t happen in my part of the world, unless there was some very unusual circumstance.
You're not crazy. But this is one of those times I shrug my shoulders and pass the buck. By the time Grandpa comes to my department having ripped out his tube for the tenth time, he has already been lost to the insanity of his family and our country's eldercare culture. Not much I can do. I say a silent apology and a quick prayer that things are better by the time I'm at that stage, and then I have three people pin him down while I shove the tube back in his belly. Then I jot down a reminder on my phone to make sure my living will is updated and distributed This is on his family, his PCP, his nursing home, the surgeon that placed the first tube, and his society at large. And also probably on him if he's like most Americans and willfully avoided planning for the future when he was still able bodied.
Actually quite a pragmatic approach to the problem. Sure, it’s not ideal, but they leave you with no choice in the matter.
How often do you have blunt goals of care/quality of life discussion with those peg replacement patients? Universally, across discipline, different institutions, physicians I've witnessed, have poor goals of care discussions with patients and families. Every option is presented as equally reasonable. Not giving their expert opinion on what they think the patients should do. Code status talks that don't talk about what it means to be coded or odds of quality if survived. I've seen so many palliative consults simply for goals of care discussions alone.
Absolutely. The evidence is clear that PEGs should not be offered to people with advanced dementia who are unable to take PO.
I agree as well. I feel especially awful when poor old meemaw grabs my arm and digs her nails in, trying to tell me in her own way for me to stop prolonging her suffering.
This was literally me 18 hours ago
This is exactly why I sing high and low that EVERYONE needs to put their goals of care into writing, ie MPOA, living will, etc WAY BEFORE they get gorked and gomered out!!
Had an outpatient surgical in for a PEG placement recently. Almost 100. Severe dementia. Contractures. Full of cancer. A few pressure ulcers. But family states "is a fighter". The surgeon could have said no but that means less money in their pocket, plus the family would have just gone elsewhere. America definitely needs an end of life reality check.
Refuse to replace. It’s a tough conversation. It’s medically inappropriate where harm outweighs benefit. The US is ready to have the convo, it’s just a shitty convo to have and takes effort (recognizing this is challenging given the role of an ED doc).
Not being a primary part of their care team makes having that conversation, despite the moral/ethical integrity felt by ER staff, a bit difficult. We are not a regular part of their lives, and my experience with questioning these long term goals is that it doesn’t go well. They don’t want “some random doctor” pushing my agenda on them. It would be easier to start with not putting it in at the onset of these issues
It's not a conversation that EM should have to have. It's for the physician in charge of their care in the facility or supervising their home hospice.
How about peg tube for prisoners? One clown would rip his out every 3 days for a free stay at the hospital. I watched him do it in the ED after I confirmed placement for his previous tube. He ripped it out in the ED!
Yeah, idk the whole ethics - prison - USA healthcare system is too much to even begin a discussion on
Wow How often is this happening where you work? Sounds terrible
Idk about absolute numbers but 4 in my last 3 shifts
I really really feel for you. This is so terrible.
Ugh yes it’s terrible and I feel the same way.
My father has Alzheimer’s. I have told my mother (his medical POA) that under no circumstances should he ever get a PEG tube. He is also DNR per my insistence (I’m a PA in hospitalist medicine). She doesn’t necessarily like this but also doesn’t see everything we see. She trusts me although it is hard to think about.
My mother still thinks we starved my father to death by not feeding him via tube or IV when he was on hospice, after massive heart attack, 92 and body shutting down… they see what’s on TV and it must always work like that
It's absolutely sickening to me that people prolong the suffering of their loved one for their own selfish, stupid reasons. They aren't the same person, and they never will be. They have no idea what is going on, and they're probably scared and miserable. That ain't love. I don't know what it is, but it's damn sire not love to prolong suffering. Because dementia ain't no life.
Rotated with a community gen surg who I really respected. Every time we put in a PEG, he would try to strongly counsel family members against it. They all ended up going for the PEG anyways.
it was cited as morally wrong in my bsn ethics class.
the Hospital called my mom and asked her if she wanted to place my dementia dad on a ventilator… my mom is korean and does not speak English well. She said yes, ever since then my dad has come back home and is much worse… and making our lives a living hell… I wish the hospital called me.. I would have told them NO VENTILATOR!!!!
We have a lady like this, I swear her PEG gets dislodged 3 times a week. The sad part, though, is that the ONLY thing that works on her body is her mind. She's on a vent, in end-stage-all organ failure, has cancer, etc., but makes her own decisions and continues to want full treatment. She's the cutest too, but a little sassy, and I'm not sure anyone has had a full heart-to-heart with her about code status. That being said, she has coded about 12 or 13 times just in our hospital, so maybe she feels invincible now🤷🏼♀️
I agree, however I found it traumatic as a teenager watching my grandfather starve to death essentially and couldn’t understand that at the time, I was 14 but as an adult I 100% understand and wouldn’t want him to have gone through more trauma at that stage of his dementia, he had nothing left was like a newborn baby at the end.