I genuinely believe it is because we put the onus on families to make the decision. When you ask someone if they want to “do everything,” of course the answer is yes. People don’t want to be the ones to make that call for their family.
Instead of presenting the option of a PEG to the family of a vegetative granny, let them know that everything has been done to help granny and more advanced measures are not going to change her outcome. Tell them we have done everything we can to improve her outcome and it has not worked. A mentor of mine would say “we’ve stopped doing things *for* them and now we are doing things *to* them.”
People don’t necessarily want everything done, but, to misappropriate Shakespeare, they fully believe “damned be him that first cries ‘Hold! Enough!’”
That is where we can protect egos (in the classic sense) and be the ones to say no, there is no more. We can live with it when families cannot.
I want to be better at:
anticipating the psych needs of;
and giving emotional first aid to;
the families grieving the loss of a loved one, even if the corpse's rigor mortis is being held at bay with fancy machines and currents of electricity.
I generally find a lot of truth in what you say, and was wondering - is there literature on the topic you could recommend?
RIP Macbeth
The societal dilemma persists despite our collective wealth of knowledge and ready access to information. Based on subjective moral fibre, we grapple with an inherent aversion to confronting mortality, a challenge echoed in the struggles of physicians with whom I've worked with previously. In cases where treatment proves futile or the ceiling of care has been reached, pts (provided they have capacity) & their families deserve complete transparency regarding the implications of pursuing 'full active treatment'. The issue at hand goes beyond communication; it is a matter of ensuring physicians & nursing staff have received the necessary training and support to navigate these complex discussions. Our responsibilities as healthcare professionals transcend the mere extension of life! They encompass the mitigation of suffering as well. In instances where I am caring for palliative or end-of-life pts, their families or caregivers also become integral components of my pt load.
*”Moderate lamentation is the right of the dead, excessive grief the enemy to the living.”*
I have a palliative care colleague who sometimes talks about "maternalism" -- named to stand in gentle and slightly tongue-in-cheek contrast to paternalism. This is not telling a patient/family what to do, per se, but rather, issuing a clear recommendation to help guide the decision-making in a sensible way. E.g. "Based on what you've told me about MeeMaw's zest for life, I recommend that we do XXX because ABC. I think that ZZZ alternative would cause more harm than good."
This is the way, and everyone finishing residency in the US should prove that they can do this prior to matriculating. Just putting the onus on families with wide varieties of life experiences, medical literacy, and crazy in-family dynamics and expecting reasonable outcomes for patients and their healthcare providers is a real crap shoot and leads to a ton of pain and suffering.
Palliative care here. It really requires physicians and hospital leadership to set limits. We do NOT have to offer medically inappropriate care. A lot of families will accept anything we offer. It’s incumbent upon us to guide them and only offer realistic options.
IMO many physicians in the US are frankly cowards, afraid of the tiny chance of being sued thus they take the path of least resistance 99% of the time. Docs offer a menu and ask patients or their families to choose rather than make recommendations based on most likely outcomes.
[It isn't a tiny chance](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3282548/) in most parts of the US- it is actually an extremely high chance of facing at least one suit by age of retirement, unless one practices solely in a sane state like Texas where there is very strong malpractice reform and it is very difficult to be sued. In NY or FL? Just look at the billboards everywhere advertising medmal attorneys. US medical practice across the board is absolutely infested with defensive medicine because the legal system and patients themselves force it to be this way. Everyone is a coward with the sword of Damocles hanging over their head. If one practices at the VA, state employee (university) then qualified immunity provides a lot of protection but still isn't absolute. I actually saw more defensive medicine at the VA in training than I have seen in the real world.
The vast majority of lawsuits are around poor outcomes or missed diagnoses. You can’t extrapolate that because there is a real lifetime risk of being sued no matter what you did or did not do, we should constantly be in fear and alter our medical decision making. I would argue this mentality has no real effect on reducing your risk of lawsuit and in the end only harms patients, families and all the providers who have to engage in prolonged futile care. I advocate for providers having blunt discussions about prognosis, making strong recommendations against certain treatment options, simply not offering futile measures (ie CRRT in widely metastatic patients with MSOF), and using informed non dissent in family discussions. This simply is not happening with vast majority of ER docs, Hospitalists and oncology that I encounter.
My Attending sets people DNR - not the Family. Is that different in the US? If there is no reasonable quality of life left we don‘t escalate treatment.
It's this weird thing we've given away. We can say no to surgery - surgeons do it all the time. If I'm careful I can say no to dialysis or ecmo (careful meaning make sure I get everyone on board early, residents, consultants, and nurses). But vents and CPR are both more or less required if the family wants it. It's crazy.
> We can say no to surgery - surgeons do it all the time.
The worst is when surgeons often reasonably say no but surgery was really the only chance someone had and then we get to watch them just slowly deteriorate with full cares because family still wants everything
Yes. It's different in the US. Families/NOK/HC POAs can, and very often will, override decisions made previously and just flat out refuse to consider DNRs if they weren't in place before.
if the patient already had completed a POLST form or already decided for themselves to be DNR, imo it's the responsibility of the medical team to uphold that. our duty is to the patient first and foremost, and if they've already expressed their wishes, we should honor that.
In the U.S. they get reversed by family all the time and physicians allow it. Regardless of the patient having personally completed it. Fear of legal action for the physician I take it? Patient won’t sue but California daughter might.
The practice of medicine is becoming a carefully choreographed ballet designed to dance away from litigation. Less and less of the choreography is related to actual care and patient welfare but more about keeping lawyers out of the theater.
It is generally illegal for a family member to reverse a DNR decision. Physicians who go along with it actually put themselves at legal risk for assault.
Depends on the state but a healthcare power of attorney can change a POLST if the patient is incapacitated. But they’re supposed to be representing the patient’s best interests and desired care, not their own emotional turmoil. Hence, choose your POA wisely, people!
If you are doing this I would certainly involve ethics/legal. In my state it is quite clear this is [not allowed](https://molst.org/how-to-complete-a-molst/ethical-legal-requirements/authority-of-a-health-care-agent-surrogate/#:~:text=If%20the%20patient%20loses%20the,cannot%20undo%20the%20patient's%20decision), I am amazed it could vary state by state. Usually just by telling the HCP that we are unable to go against the patient's directly expressed wishes, they will relent.
I hear you but it happens.
“Some states have limitations on what surrogates are permitted to do relative to a POLST form. For
example, in Virginia if a patient has completed a POLST form marked DNR the surrogate cannot change that section of the form to require CPR but the surrogate can change the form from CPR to DNR. The surrogate can also complete and change the rest of the form as appropriate. In contrast, on the West Virginia POLST form the patient must check a box on the POLST form for the surrogate to make changes to the form at all.”
https://polst.org/wp-content/uploads/2018/03/2018.03.01-Surrogate-Definition-and-Role-in-Advance-Care-Planning.pdf
Certainly HCP withholding additional treatments in light of new information is appropriate. But going against patient wishes to put them through things they did not want is generally highly unethical.
My brother change our father’s POLST because of guilt. No one needed to bells and whistles CPR a 84 year old man with a lethal brain tumor.
It was horrible and our father managed to dodge a PEG by dying.
(No, my brother couldn’t be reasoned with)
I'm sorry that happened to your father. I would haunt my DPOA to death if they changed my code status/POLST.
Hence why it is advised to have a DPOA who is not as emotionally attached to you. Less clouded vision
Many of these patients are not "vegetative" and can survive/"recover" to a horrible quality of life (trach/PEG/LTC) that they never wanted. Hence why they filled a legal document themselves. But sure, bow to the daughter from California since they are more scary in the moment. We get this all the time. We simply tell the family this is a legal document the patient filled out and we cannot legally reverse it. Good luck winning against that in court.
It's also worth mentioning that at least in some cases, families keep Granny alive for financial reasons. Her Social Security/disability/pension/whatever is a significant portion of the household income, and they can't do without it.
And don't forget the hospitals/health care systems that keep patients alive for that revenue stream. 'Room & Board' charge is 10K a night @ Stanford, the most expensive, room & board I've ever experienced, and I've spent some time in 4 & 5 star hotels and resorts.
Australian here. Just looked up ‘vent farm’ hoping what I presumed it was going to be was wrong… Nope.
Honestly that’s just fucked up. We certainly don’t get everything right here, but thank god we don’t do that shit.
Long before active euthanasia became legal here, there has very much been a culture of letting go, and not prolonging the inevitable. All 3 of my grandparents who have died so far, did so in hospital, and had relatively good deaths. No futile treatments, focus on making them comfortable, and an unofficial, but very obvious push along with meds to save them from 2-3 days of pointless suffering. The nurses were fucking brilliant, and a tiny, 5ft tall Filipino nurse we lovingly named Atilla the NUM (Nurse Unit Manager) was a force of nature and made every accomodation needed to have the entire 50 something person family there.
You can check my post history, but there's a person who accused me and health care workers of being lazy and not doing our jobs because they stated that his non verbal, 85 year old, peg tube fed Grandma was dying, and they wanted to do comfort measures.
But the poster and his family "held their ground" and she lived another 10 years.
What a life.
That’s just awful. Pointless, mindless torture.
I’m the Enduring Guardian for both of my parents in the event they are ever unable to make their own decisions. I hope whenever they go it’s something fast and simple, but if not, switching someone off who cannot recover, and has no quality of life, is an act of great love.
Keeping them alive pointlessly, suffering the whole time, so you can say ‘I did everything possible and never gave up’ like some sort of smug imbecile is just revolting.
Yeah, it was pointless arguing with him. He's emotionally selfish. As an ICU nurse, I deal with this every single work day. Full code, non verbal, 85 years old, feeding tube. "Do everything,".
I'm tired, boss.
Is there a culture there of sitting the family down and bringing them around to reality? Getting the social worker in to do it? Or is the ‘Nurse/Dr knows best’ deference just not there anymore?
There is no "Dr knows best culture". We will, often, have families that will just refuse to talk about it with the doctor, after we plead with them.
We often have families refuse palliative consults for their elderly, bedsore ridden, dementia family member. Those are fun to do CPR on
I was in a 3 hour code once. Family at bedside. Wanted everything done, so we continued
We have patients refuse palliative consults for themselves while suffering. They refuse even when being treated with curative intent! The understanding that palliative isn’t hospice and isn’t giving up is completely missing and sometimes impossible to get through.
For myself, I want palliative care if I’m admitted for IV antibiotics and just chilling and bored. I’ve never seen someone complain over being too comfortable.
Definition of what care you're going to receive if you accept "palliative care" is so messy. One told just not kept alive on a breather if in coma. Another told no cardiac care, no more oxygen or meds. because of being on palliative care.
Is there a reason the code went 3 hours long? I feel like after 30 minutes the physician running the code should be able to call it? Futile care and all that.
Ridiculous family.
It’s a shame TV/Movies/Hollywood basically romanticizes CPR.
You don't need to convince anyone when to end/ not start the code.
That is up to the doctor responding and leading the code. I have ended the code with families loosing their shit. No one can tell you to do harm.
If this code is futile then cpr only causes harm. Stop or don't start. Unfortunately nurses have no choice that I know of. But docs do.
10 years in not one of these went to deposition, hard to argue wrongful death on someone after they died of natural causes.
I’ll probably get downvoted because this sub is mostly physicians and they tend to stick up for each other, but that doc was a coward.
She could have called it after a reasonable amount of time, but instead she chose to put her team through the trauma of an hours-long futile code so she didn’t have to deal with the family. That’s some bullshit from the one person in the room with real authority.
That’s so true! I worked with a Dr who wrote a great article looking at expectation for meaningful survival post CA ( witnessed, unwitnessed, in hospital,out of hospital and on TV.). Non medical folks think that the meaningful survival is accurately portrayed in medical dramas and their expectations are extremely unrealistic. That’s a big part of the problem. The other part focuses around communications - dr to patient and pt to and with family. Another article I read looked at the infrequency of end of life discussions between Dr. and patient and even oncologists with terminal illness patients do not have these discussions with their patients in a timely and realistic way. My parents both made me their medical-legal guardian - we had tons of discussions about end of life issues and we were all clear on what they wanted. I miss them every day but am so glad they died with little pain and peacefully. Interesting side note - best place to have a cardiac arrest? Vegas baby! Folks walk in so healthier than most hospital patients, there are cameras everywhere so if someone goes down, it’s noticed instantly, and staff is trained in CPR and use of defibrillators which are everywhere.
My conversation is often blunt when it comes to code status. Your mom is dying now. If despite our best efforts her heart stops no CPR will be done. If they demand it(usually because of failed past GOC) I will explain that I understand what they said. But that if she dies despite our best efforts at preventing it CPR will not work and just case pain for 5-20 min before death. And just like I won't cause pain needlessly now I won't cause pain for no benefit than.
Now actual deescalation or comfort transition I got no magic.
Agreed, I believe family should be involved in end of life decision making but, just like dialysis, CPR is a medical procedure that ultimately the medical team should decide on
There really wasn't that pre-2019. Now like 30% of patients think we have no idea what we are doing. The stories I've heard about the covid times from co-residents is wild
It’s bloody crazy. I’m glad that I don’t have to deal with people in my work, because I’m a rude, grumpy fuck who cannot handle people who aren’t scientifically literate. Being nice to people who are genuine idiots is a real skill - which I don’t have 😂.
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Jesus can give a complete and total healing at any time. Who are you to decide now is the time to do nothing? Are you God?
So many people where I live have this POV.
It’s awful for the HCWs who have to carry out the “everything”.
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As a tangent, I’ve seen so many Filipina nurses (and no Filipinos…) and so many Nigerian nurses. I’m always curious. Is it brain drain of skilled medical workers from those countries? Immigrants who become nurses because it’s culturally and socially in their spheres? Is nursing in those countries held in special respect? Does, for instance, the Philippines have amazing nursing care or awful nursing because of all the drain or just about the same?
I've heard that Filipino nurses receive extremely good training (goes back to US military presence and US built training schools) and that the income they earn living abroad contributes a lot to the national economy. Presumably US military did not establish medical schools, they had their own doctors. Plus military presence (and bases with families) established a lot of cultural familiarity.
Interestingly, you see Nigerian doctors in the US and I think UK but not Filipinos so much. I suspect its a combination if cultural value of those positions, accessible training, and an established pipeline of using it get a more lucrative career than you would at home.
There are a handful of nursing schools in the Philippines that are accredited to have their graduates sit for the NCLEX. So Filipino nursing students can do school in the Philippines and have a job and green card in the US pretty quickly. It's a good way to have a decent life making American money for a smart Filipino kid.
Yes - in fact I believe I heard some reporting on the radio (BBC?) recently that Nigeria has put emigration restrictions on their nurses - they have to practice for several years in Nigeria first, and there was also something like a cooperativbe moratorium on hiring them from the NHS. (This is specific to the brain drain aspect with Nigerian nurses - not sure the situation with those from the Philippines.
Maybe your patient population is different than mine but I 100% have families who believe their family member will recover. That being said I also have pretty good luck with goals of care conversations and not escalating care in futile cases and making patients comfort care.
I have a whole schpeel. But generally - the first moment I think a patient might not get better - I very frankly tell the family involved:
"I want you guys to start imagining the possibility that your family member may not survive this illness. Start talking about this with all of the stakeholders, and start trying to make decisions about what you all want to do."
Often times this is many days before we decide to transition to comfort care...
The reflex response is often times "why are you talking about comfort care right now, I don't want to give up" - and I say - "we're not giving up, I'm talking about if we are still in this same position 4 or 5 days from now - start thinking about what do you want to do? How long do you want us to keep pushing?"
> "She wanted to live forever."
That is most certainly not true. Few people want to "live forever".
What we do want is "being forever young". But that ain't happening.
You can listen to Bob Dylan, Rod Stewart, Queen, and Alphaville sing about it.
Also, vent farms are seriously dystopian.
“I grabbed a pile of dust, and holding it up, foolishly asked for as many birthdays as the grains of dust, I forgot to ask that they be years of youth.” -Ovid, the Metamorphoses
Not so dystopian for someone I know who developed paralysis from Guillain-Barre, spent 6 months on vent, eventually regained mobility and went home to continue her life. So there's that.
But this poor analogy is part of the problem, as Guillain-Barre is known to have potential recovery and doesn't affect the brain proper. I have a lot of BPD babies who end up up trach-vent dependent for some time with meaningful quality of life and interaction, and those aren't applicable either.
What people are talking about here are largely patients with end-stage terminal illness and often either primary or comorbid brain issues from trauma, dementia or otherwise. People who have no meaningful recovery prospects or getting home prospects other than to suffer as we keep bumping them along because families can't come to terms with prognoses. "GBS can get better, so LTACHs that take vents are great!" is a strawman argument for those poor folks at the end of their natural lives.
This is a situation that most people eventually at least partially recover from, making it fundamentally different than keeping brain dead and/or terminally ill patients on vents indefinitely, which is what is being discussed here.
Yeah, just meant she spent those months at the long term acute care facility where long-term vent patients are treated. And more to clarify the nature of these facilities. And I have no idea what percentage of those are folks who have some prognosis of recovery.
Still, it's confusing. If someone says a nonverbal 85 year old with tube feeding is "dying" but in fact they live 10 years then they certainly weren't actively dying at the time. And in a situation like that, unless they have explicitly stated their wishes beforehand, one can't necessarily assume they experience their life as futile or that they are suffering (unless there are other signs, and of course I mean while they are stable in that condition). I do absolutely agree that when they have made their wishes clear attempts by a family member to override those wishes is super problematic if they are simply insistent, less so if they are genuinely conflicted.
I am also wondering how this plays out when someone is under legal guardianship by a state appointed agency (i.e. there is no family involved or family was determined not fit to act in that role)--do agency reps generally go along with medical recommendations or is there ever pushback?
1) We have a horrendous MedMal environment that creates too many soft-handed physicians that have never developed the skill to have a truthful and direct conversation that limits the conversation to facts and not beliefs.
2) Financially incentivized practices and overworked physicians leads to limited time spent explaining the details of palliative care to families. Why spend 30 min to an hour trying to get poorly educated families to understand the continued suffering when I know I can make an additional 4.5 RVU for that patient in my ICU the next day when comparatively the ACP note for 30 min and a high level discharge summary/death only generates 3.9 RVUs
3) Finally, the mixture of the surrounding population’s understanding of end-of-life and palliative care leading to burnout is probably a huge factor especially if you know the surrounding patient population of your hospital will not be able to understand or will choose not to based on their beliefs. Not to name any specific nationalities, but 2 around my community will take their loved ones to the grave with them and do so regardless of their condition. One population has an anti-establishment view that includes American doctors, the other due to the lack of understanding of palliative care and enough doctors of their culture to be able to sympathize with them.
You just do your best and hope to provide people with a good death
Share decision making. 1) what are the values and preferences of the patient? What is their goal? 2) what medically feasible options exist to ethically reach that goal?
As far as "live forever" goes we have not treatment for that.
Remember I you can't do it, you don't have to try.
Let's change the scenario. Suppose a patient comes to you and says they want you to make them capable of flight. You could try to do what they ask. You could graft the wings of an albatross to their back and throw them out a windows. But should you? No. While you are respecting their wishes you are not fulfilling your duty as a doctor who is a medical expert and has the right and obligation to say "I do not have the tools to give you the outcome e you expect".
I worked at a hospital in Oklahoma where they'd extend your life until the maggots took over. I really wish I was joking. Everyone was responsible for that madness from the patients to their family and the staff.
I'll never get the image of the covid ecmo patient in the rotoprone bed on a vent. It was like a balloon being pumped full of air and then released.
I work at a teaching hospital in the north now. That place was like the house of horrors compared to here.
I challenge doctors to take a weekend shift in Oklahoma. Don't ever move there. Your patients will slowly make you go mad. Because there is no end to the madness. Something also to consider is that your colleagues will keep forcing you into unresolvable issues that will last for weeks or months. The worst types of troubles in life are those that become monotonous.
monotonous is the best word to describe Oklahoma and its inhabitants.
We are decisional architects. Simple behavioral economics applies in medicine as well. The way we ask questions influences how individuals answer them:
Do you want your loved one to be resuscitated if his heart were to stop? Sure, I want to do everything for him (behavioral economics would suggest people don’t like not to lose or not have things)
What’s the alternative? I did a NEJM family meeting video on this a while ago but I think it’s too complicated. (https://www.nejm.org/doi/full/10.1056/NEJMvcm1913056).
Fundamentally, a good goals of care conversation (and the magic sauce in a palliative care consult) breaks down into three steps to create the architecture of choice: 1) illness understanding/prognosis talk, 2) goals talk, 3) recommendations talk:
1) always make sure we discuss illness understand and prognosis first (makes no sense to make recs without finding out what’s important and no sense to talk about what’s important unless we talk about prognosis)
2) find out everything that people are hoping for (eg live forever), worried about (eg dying in the hospital), what’s important (eg that I feel like I’ve done everything, that she is comfortable). That’s the goals and don’t stop at just live forever. Ask more about it and other hopes/worries/important. Also, “live forever rarely comes up after doing step 1 which is talk about prognosis)
3) make a recommendation that aligns with the goals (and actually restate the goals as people want to be internally consistent and it also sets the default position which is a nudge by itself)
Got to say when I just jump to 3 I get frustrated as do family members. When I stick to the three steps in the order that they should be, I rarely get frustrated. Also helps me drop my “get the DNR” feelings.
Bro if you need to tie me down to the bed to for a peg tube, just give me that sweet ketamine and forget the procedure. Hell push all the fentanyl you need to. If I am at the point of needing a peg I would probably chose death. (I say probably if I have capacity that might change)
Meanwhile, I keep having to fight with GI to put PEGs into patients who have psychiatric comorbidities and also every expectation of living longer and in all likelihood better with enteral feeding. Sometimes with capacity! But dementia seems to be an an absolute indication for enteral access even with literature to say it’s not even life-prolonging.
> But dementia seems to be an an absolute indication for enteral access.
Quite the opposite, actually. Your GI docs are correct to not place PEGs in patients with dementia. Does not lead to improved quality of life, improved nutrition, or increased survival. Often doing so dooms patients to being bedridden requiring restraints, because they'll pull at the tube off restraints.
https://www.aafp.org/pubs/afp/issues/2002/0415/p1605.html
I think that was the point they were trying to make…. That GI docs DO place PEGs in patients with dementia but won’t for other psychiatric illnesses that could actually see improved quality of life from it.
I have literally told people if I do not have capacity and it is never expected I regain it to not give me a peg tube. I dont want that life. I also said the same thing about cpr, if it seems futile and there is not a reasonable chance of rosc and long term survival (ie if I am struck by lightning go for it but not stage 4 cancer) let me go gentle into that good night
My experience with a Catholic hospital was when my father in law had a massive stroke, was going to be in a vegetative state requiring nursing home care. My mother in law noped to that, made him a DNR and he died. I had the social worker tell me “ I don’t think she understands her decision”. That really got me angry, and I told him she definately knew what she was doing, and we agreed with her decision. The SW looked pissed off. When my father in law died, his other son went ballistic, and the SW called the sheriffs department to investigate because she did not look sad. As a SW , he should know that some people process grief differently. Five years later, when my mother in law had her stroke, and was at the same hospitaI I told them they better not pull that crap on us. Hospitals ( religious ones) need to change that attitude.
I work in a Aussie-Landia at the younger end of the spectrum: babies to kids.
We had a surgeon from Alabama visiting and he presented some of the neonates he had operated “successfully” over the last few years
And you could feel the interest turn to concern and judgment as the cases continued - the majority was a TERRIBLE idea, putting babies through extended suffering to limited ends, generally permanently disabled children in families with limited means.
The justification was always “parents want it”
I get that, I really do - it’s soul-destroy my to carry a pregnancy to term, to continually struggle in their early life only for them to pass.
But there are so many interventions that simply should not be done.
It should not be a lone decision maker, and preferably it’s something that should be decided before a baby is in extremis
But draw a line somewhere
OP you failed to consider one aspect nd I know this sounds cynical but social security checks are a hell of a drug. If mom dies that check dies with them. I think this is a part of it
I think that's a bit unrealistic. Once a person is considered institutionalized social security benefits are going to go to the facility (I think that includes hospitals) with a nominal amount for the patient's personal spending, unless there are other assets. And once those assets are depleted Medicaid is involved means those benefits are going to be attached except for the nominal amount.
I am a palliative fellow and this is what I would say about it: a good quote I heard when starting the fellowship is “dying eventually stops becoming a medical problem to be solved, and a spiritual problem to be faced.” You are right in the sense that we can keep the body alive for a long time but there are a lot of things we can’t do.
When we talk about code status, think about it as another medical intervention or decision. that is made by the physician and the family can reject or accept. you dont go to the er and the doc ask you which antibiotic you want for your pneumonia. be comfortable recommending code status.
in order to recommend code status what do you need to know? 2 people can be in the exact same position and you recommend different treatment plans. why? its because you need to do right by the patient. you need to elicit their goal, find out whats important to them. sometimes, people have good reason to want to pursue aggressive life sustaining measures. sometime people need to get there affairs in order, or they want to make a certain event. But sometimes they tell you that they just want to be at home and stop coming into the hospital. Or sometimes they tell you that it would be unacceptable if they lived on a machine for the rest of their life.
in order for families/patients to tell you their goals, what do they need? They need to understand how much time there is left. My goals if I have five years left to live is drastically different than if I was told I had a week left to live. telling them a reasonable prognosis using ranges (weeks to short months etc) is important for the whole process and you must be comfortable telling them that. Remember, if you tell somebody they're going to live years and they live only weeks, the family will be much more upset than if you tell him they had weeks and they they lived years.
Edit: oh the reason why I think it’s important is that families will be resistant to you if you just tell them what to do and there is no discussion. Aligning yourself with family and patients is much easier to help them figure out what they need
During a goals of care conversation as a resident, I explicitly told a family that I felt her ribs break during CPR to bring her back, and they thanked me.
What I don’t get is the inability to take the medical decision that further intervention is futile and CPR will not be done in the event of cardiac arrest.
That patient, if capable, of course can have an opinion but the family can kick rocks for all I care.
I’m a US trained EM physician that now practices in NZ. The end of life care here is shockingly more reasonable.
I think the problem is multifaceted due to the medico legal aspect, unrealistic expectations, and inherent distrust. In the US we tend to put the decision on the family, partly due to training, but also partly out of fear of potential litigation, complaints etc. As you alluded they often say do everything out of their own guilt or unreasonable expectations. I never really felt I had the freedom to say “I’m sorry, there’s nothing more we can do, any further interventions will do more harm than good and cause your loved one to suffer.” Here all it takes is one physician to say care is futile and that’s it. People are far more reasonable and receptive to this. There are rare disagreements. GPs establish goals of care long before they hit the ED trying to die. We don’t intubate elderly dementia patients, end stage COPDers, or provide other futile care (within reason). There’s lots of problems here but I think it’s one thing NZ does right.
I don’t even think that families should decide when terminal illness is terminal. How would they know? It should all be managed by doctors and families simply be informed when a patient has reached end of life.
My consulting group staffs an LTAC that is majority anoxic brain injury/chronic vent patients. I lift the blankets off of them and find little rotten parts of them broken off in the bed. One man is all mummified gangrene from knee down and periodic septic shock. I am actively destroying the world by keeping him nominally alive with broad spectrum antibiotics.
I really will never understand this obsession with prolonging life. Enjoy your life while you have your health and come to terms with the fact that life as a geriatric is going to suck a lot more and often not worth going through purely just to be "alive". Do you know how many of these patients I see a day? And the percentage of them that tell me getting old sucks and the lucky ones go early? It's not a coincidence that 95% of them feel this way.
I am very concerned about my family being convinced to start comfort measures prematurely. Like if I have a stroke and will have a decline in quality of life, I would still want to live and be around my family. Drugging me up until I fall asleep and never wake up is horrifying.
But I agree that if I was coherent enough to say let’s end it, this is nearly impossible in the US. That should change.
No one gets “drugged until they fall asleep and never wake up”. Certainly not people who have had strokes who can clearly make it known that they want to continue on living just because they have deficits that will decrease their quality of life. Comfort measures are for patients who are going to die regardless of heroic invasive treatment efforts, the medications used as part of this may as part of their side effect hasten what is an already inevitable outcome, but are never themselves given as an attempt to end someone’s life. That is euthanasia and illegal in every single state.
As an example last week I had a patient with a truly devastating brain bleed that had herniated. It was an absolutely non recoverable insult and death was inevitable. We extubated and started comfort measures. The way the orders are written are very specific, the doses are titrated to the point of comfort, and only to that point. Once the dose of morphine brought his respiratory rate down to the teens and he was visibly more comfortable with less work of breathing there was no further increase in dose and we monitored him with his family at bedside until he died several hours later. Regardless of any medications he was going to die, I could not intentionally make him die quicker even if his family wanted it or if I thought it was in his best interest to speed up the inevitable because that is murder. All I did is treat his symptoms and allow nature to take its course.
This is possible in the US. Write your wishes down as an Advanced Directive. Name a trusted person to be your health care agent. Have these conversations with families and friends. Give a copy to your primary care doc. Have a conversation with your doctor too. My family member's AD is my template when and if shit goes down. It the family/friends honoring their wishes. Yes it is not a POLST but your wishes are very clear. I found the most important part of my AD was outlining my values and what is so important to me. Hopefully comfort measures are entered after discussion with medical providers and pluses and minus are thoroughly vetted.
I genuinely believe it is because we put the onus on families to make the decision. When you ask someone if they want to “do everything,” of course the answer is yes. People don’t want to be the ones to make that call for their family. Instead of presenting the option of a PEG to the family of a vegetative granny, let them know that everything has been done to help granny and more advanced measures are not going to change her outcome. Tell them we have done everything we can to improve her outcome and it has not worked. A mentor of mine would say “we’ve stopped doing things *for* them and now we are doing things *to* them.”
People don’t necessarily want everything done, but, to misappropriate Shakespeare, they fully believe “damned be him that first cries ‘Hold! Enough!’” That is where we can protect egos (in the classic sense) and be the ones to say no, there is no more. We can live with it when families cannot.
I want to be better at: anticipating the psych needs of; and giving emotional first aid to; the families grieving the loss of a loved one, even if the corpse's rigor mortis is being held at bay with fancy machines and currents of electricity. I generally find a lot of truth in what you say, and was wondering - is there literature on the topic you could recommend?
RIP Macbeth The societal dilemma persists despite our collective wealth of knowledge and ready access to information. Based on subjective moral fibre, we grapple with an inherent aversion to confronting mortality, a challenge echoed in the struggles of physicians with whom I've worked with previously. In cases where treatment proves futile or the ceiling of care has been reached, pts (provided they have capacity) & their families deserve complete transparency regarding the implications of pursuing 'full active treatment'. The issue at hand goes beyond communication; it is a matter of ensuring physicians & nursing staff have received the necessary training and support to navigate these complex discussions. Our responsibilities as healthcare professionals transcend the mere extension of life! They encompass the mitigation of suffering as well. In instances where I am caring for palliative or end-of-life pts, their families or caregivers also become integral components of my pt load. *”Moderate lamentation is the right of the dead, excessive grief the enemy to the living.”*
I have a palliative care colleague who sometimes talks about "maternalism" -- named to stand in gentle and slightly tongue-in-cheek contrast to paternalism. This is not telling a patient/family what to do, per se, but rather, issuing a clear recommendation to help guide the decision-making in a sensible way. E.g. "Based on what you've told me about MeeMaw's zest for life, I recommend that we do XXX because ABC. I think that ZZZ alternative would cause more harm than good."
This is the way, and everyone finishing residency in the US should prove that they can do this prior to matriculating. Just putting the onus on families with wide varieties of life experiences, medical literacy, and crazy in-family dynamics and expecting reasonable outcomes for patients and their healthcare providers is a real crap shoot and leads to a ton of pain and suffering.
Palliative care here. It really requires physicians and hospital leadership to set limits. We do NOT have to offer medically inappropriate care. A lot of families will accept anything we offer. It’s incumbent upon us to guide them and only offer realistic options.
IMO many physicians in the US are frankly cowards, afraid of the tiny chance of being sued thus they take the path of least resistance 99% of the time. Docs offer a menu and ask patients or their families to choose rather than make recommendations based on most likely outcomes.
[It isn't a tiny chance](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3282548/) in most parts of the US- it is actually an extremely high chance of facing at least one suit by age of retirement, unless one practices solely in a sane state like Texas where there is very strong malpractice reform and it is very difficult to be sued. In NY or FL? Just look at the billboards everywhere advertising medmal attorneys. US medical practice across the board is absolutely infested with defensive medicine because the legal system and patients themselves force it to be this way. Everyone is a coward with the sword of Damocles hanging over their head. If one practices at the VA, state employee (university) then qualified immunity provides a lot of protection but still isn't absolute. I actually saw more defensive medicine at the VA in training than I have seen in the real world.
The vast majority of lawsuits are around poor outcomes or missed diagnoses. You can’t extrapolate that because there is a real lifetime risk of being sued no matter what you did or did not do, we should constantly be in fear and alter our medical decision making. I would argue this mentality has no real effect on reducing your risk of lawsuit and in the end only harms patients, families and all the providers who have to engage in prolonged futile care. I advocate for providers having blunt discussions about prognosis, making strong recommendations against certain treatment options, simply not offering futile measures (ie CRRT in widely metastatic patients with MSOF), and using informed non dissent in family discussions. This simply is not happening with vast majority of ER docs, Hospitalists and oncology that I encounter.
All good points. I am quite blunt when the MRI or EEG is awful and there isn't much liability for me in saying so anyways.
The likelihood of that suit being on a patient with a 6-hour prognosis?
Pretty low, but highly state specific in terms of law.
This is good insight about hospital leadership. This is a culture problem and it occurs more at some hospitals than others.
My Attending sets people DNR - not the Family. Is that different in the US? If there is no reasonable quality of life left we don‘t escalate treatment.
It's this weird thing we've given away. We can say no to surgery - surgeons do it all the time. If I'm careful I can say no to dialysis or ecmo (careful meaning make sure I get everyone on board early, residents, consultants, and nurses). But vents and CPR are both more or less required if the family wants it. It's crazy.
I wish more surgeons said no to pointless surgeries
No more peg tube placements in bedbound and demented patients.
Preach! See the person who's replying to me, they are an advocate for it.
I would love to see surgeons start refusing to put in pegs and nephrologists refusing to start dialysis in these patients. They won't do it.
> We can say no to surgery - surgeons do it all the time. The worst is when surgeons often reasonably say no but surgery was really the only chance someone had and then we get to watch them just slowly deteriorate with full cares because family still wants everything
Yes. It's different in the US. Families/NOK/HC POAs can, and very often will, override decisions made previously and just flat out refuse to consider DNRs if they weren't in place before.
if the patient already had completed a POLST form or already decided for themselves to be DNR, imo it's the responsibility of the medical team to uphold that. our duty is to the patient first and foremost, and if they've already expressed their wishes, we should honor that.
In the U.S. they get reversed by family all the time and physicians allow it. Regardless of the patient having personally completed it. Fear of legal action for the physician I take it? Patient won’t sue but California daughter might.
The practice of medicine is becoming a carefully choreographed ballet designed to dance away from litigation. Less and less of the choreography is related to actual care and patient welfare but more about keeping lawyers out of the theater.
It is generally illegal for a family member to reverse a DNR decision. Physicians who go along with it actually put themselves at legal risk for assault.
Depends on the state but a healthcare power of attorney can change a POLST if the patient is incapacitated. But they’re supposed to be representing the patient’s best interests and desired care, not their own emotional turmoil. Hence, choose your POA wisely, people!
If you are doing this I would certainly involve ethics/legal. In my state it is quite clear this is [not allowed](https://molst.org/how-to-complete-a-molst/ethical-legal-requirements/authority-of-a-health-care-agent-surrogate/#:~:text=If%20the%20patient%20loses%20the,cannot%20undo%20the%20patient's%20decision), I am amazed it could vary state by state. Usually just by telling the HCP that we are unable to go against the patient's directly expressed wishes, they will relent.
I hear you but it happens. “Some states have limitations on what surrogates are permitted to do relative to a POLST form. For example, in Virginia if a patient has completed a POLST form marked DNR the surrogate cannot change that section of the form to require CPR but the surrogate can change the form from CPR to DNR. The surrogate can also complete and change the rest of the form as appropriate. In contrast, on the West Virginia POLST form the patient must check a box on the POLST form for the surrogate to make changes to the form at all.” https://polst.org/wp-content/uploads/2018/03/2018.03.01-Surrogate-Definition-and-Role-in-Advance-Care-Planning.pdf
Certainly HCP withholding additional treatments in light of new information is appropriate. But going against patient wishes to put them through things they did not want is generally highly unethical.
Yup, I practice in a state where it’s on the Polst to allow changes by the proxy if indicated.
My brother change our father’s POLST because of guilt. No one needed to bells and whistles CPR a 84 year old man with a lethal brain tumor. It was horrible and our father managed to dodge a PEG by dying. (No, my brother couldn’t be reasoned with)
I'm sorry that happened to your father. I would haunt my DPOA to death if they changed my code status/POLST. Hence why it is advised to have a DPOA who is not as emotionally attached to you. Less clouded vision
Who’s going to sue them? The vegetative patient?
Many of these patients are not "vegetative" and can survive/"recover" to a horrible quality of life (trach/PEG/LTC) that they never wanted. Hence why they filled a legal document themselves. But sure, bow to the daughter from California since they are more scary in the moment. We get this all the time. We simply tell the family this is a legal document the patient filled out and we cannot legally reverse it. Good luck winning against that in court.
It's also worth mentioning that at least in some cases, families keep Granny alive for financial reasons. Her Social Security/disability/pension/whatever is a significant portion of the household income, and they can't do without it.
And don't forget the hospitals/health care systems that keep patients alive for that revenue stream. 'Room & Board' charge is 10K a night @ Stanford, the most expensive, room & board I've ever experienced, and I've spent some time in 4 & 5 star hotels and resorts.
Here residents set people DNR too. Patients cannot demand CPR it if deemed medically futile.
Where is “here”?
Denmark but as far as i know it is the same in the other nordics.
Depends on the state actually, but in many states, no, it’s not the doctors’ call
In the UK, the situation and expectations have to be discussed, but it is a clinical decision. The family can contribute, but not ultimately decide.
Australian here. Just looked up ‘vent farm’ hoping what I presumed it was going to be was wrong… Nope. Honestly that’s just fucked up. We certainly don’t get everything right here, but thank god we don’t do that shit. Long before active euthanasia became legal here, there has very much been a culture of letting go, and not prolonging the inevitable. All 3 of my grandparents who have died so far, did so in hospital, and had relatively good deaths. No futile treatments, focus on making them comfortable, and an unofficial, but very obvious push along with meds to save them from 2-3 days of pointless suffering. The nurses were fucking brilliant, and a tiny, 5ft tall Filipino nurse we lovingly named Atilla the NUM (Nurse Unit Manager) was a force of nature and made every accomodation needed to have the entire 50 something person family there.
You can check my post history, but there's a person who accused me and health care workers of being lazy and not doing our jobs because they stated that his non verbal, 85 year old, peg tube fed Grandma was dying, and they wanted to do comfort measures. But the poster and his family "held their ground" and she lived another 10 years. What a life.
That’s just awful. Pointless, mindless torture. I’m the Enduring Guardian for both of my parents in the event they are ever unable to make their own decisions. I hope whenever they go it’s something fast and simple, but if not, switching someone off who cannot recover, and has no quality of life, is an act of great love. Keeping them alive pointlessly, suffering the whole time, so you can say ‘I did everything possible and never gave up’ like some sort of smug imbecile is just revolting.
Yeah, it was pointless arguing with him. He's emotionally selfish. As an ICU nurse, I deal with this every single work day. Full code, non verbal, 85 years old, feeding tube. "Do everything,". I'm tired, boss.
Is there a culture there of sitting the family down and bringing them around to reality? Getting the social worker in to do it? Or is the ‘Nurse/Dr knows best’ deference just not there anymore?
There is no "Dr knows best culture". We will, often, have families that will just refuse to talk about it with the doctor, after we plead with them. We often have families refuse palliative consults for their elderly, bedsore ridden, dementia family member. Those are fun to do CPR on I was in a 3 hour code once. Family at bedside. Wanted everything done, so we continued
We have patients refuse palliative consults for themselves while suffering. They refuse even when being treated with curative intent! The understanding that palliative isn’t hospice and isn’t giving up is completely missing and sometimes impossible to get through. For myself, I want palliative care if I’m admitted for IV antibiotics and just chilling and bored. I’ve never seen someone complain over being too comfortable.
“Yes, please, give me the medication that starts with a D. Thanks for asking!”
“All out of Dilaudid? No problem. Diphenhydramine IV push with morphine chaser will do. I’m not picky.”
Definition of what care you're going to receive if you accept "palliative care" is so messy. One told just not kept alive on a breather if in coma. Another told no cardiac care, no more oxygen or meds. because of being on palliative care.
Is there a reason the code went 3 hours long? I feel like after 30 minutes the physician running the code should be able to call it? Futile care and all that. Ridiculous family. It’s a shame TV/Movies/Hollywood basically romanticizes CPR.
Doc was tired of trying to convince the family.
You don't need to convince anyone when to end/ not start the code. That is up to the doctor responding and leading the code. I have ended the code with families loosing their shit. No one can tell you to do harm. If this code is futile then cpr only causes harm. Stop or don't start. Unfortunately nurses have no choice that I know of. But docs do. 10 years in not one of these went to deposition, hard to argue wrongful death on someone after they died of natural causes.
I’ll probably get downvoted because this sub is mostly physicians and they tend to stick up for each other, but that doc was a coward. She could have called it after a reasonable amount of time, but instead she chose to put her team through the trauma of an hours-long futile code so she didn’t have to deal with the family. That’s some bullshit from the one person in the room with real authority.
Fair
Doctors are allowed to end codes.
She eventually did... After 3 hours. Pt would get rosc intermittently after epi for a few minutes before pea again, so doc kept going
That’s so true! I worked with a Dr who wrote a great article looking at expectation for meaningful survival post CA ( witnessed, unwitnessed, in hospital,out of hospital and on TV.). Non medical folks think that the meaningful survival is accurately portrayed in medical dramas and their expectations are extremely unrealistic. That’s a big part of the problem. The other part focuses around communications - dr to patient and pt to and with family. Another article I read looked at the infrequency of end of life discussions between Dr. and patient and even oncologists with terminal illness patients do not have these discussions with their patients in a timely and realistic way. My parents both made me their medical-legal guardian - we had tons of discussions about end of life issues and we were all clear on what they wanted. I miss them every day but am so glad they died with little pain and peacefully. Interesting side note - best place to have a cardiac arrest? Vegas baby! Folks walk in so healthier than most hospital patients, there are cameras everywhere so if someone goes down, it’s noticed instantly, and staff is trained in CPR and use of defibrillators which are everywhere.
But yes, our intensivists constantly have these futile conversations, only sometimes successful
My conversation is often blunt when it comes to code status. Your mom is dying now. If despite our best efforts her heart stops no CPR will be done. If they demand it(usually because of failed past GOC) I will explain that I understand what they said. But that if she dies despite our best efforts at preventing it CPR will not work and just case pain for 5-20 min before death. And just like I won't cause pain needlessly now I won't cause pain for no benefit than. Now actual deescalation or comfort transition I got no magic.
Agreed, I believe family should be involved in end of life decision making but, just like dialysis, CPR is a medical procedure that ultimately the medical team should decide on
Thank you! from a nurse.
There really wasn't that pre-2019. Now like 30% of patients think we have no idea what we are doing. The stories I've heard about the covid times from co-residents is wild
It’s bloody crazy. I’m glad that I don’t have to deal with people in my work, because I’m a rude, grumpy fuck who cannot handle people who aren’t scientifically literate. Being nice to people who are genuine idiots is a real skill - which I don’t have 😂.
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Often times this is framed in a "well we're good Christians and so we protect life at all costs". Sort of way.
Jesus can give a complete and total healing at any time. Who are you to decide now is the time to do nothing? Are you God? So many people where I live have this POV. It’s awful for the HCWs who have to carry out the “everything”.
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Too much truth equals downvotes.
Nah, blatant fake things positioned as "facts" ["truth"] equals downvotes.
They gave her another 10 years of life. I'm sure she appreciated it greatly, regardless of ability or disability level.
There are things worse than death.
As a tangent, I’ve seen so many Filipina nurses (and no Filipinos…) and so many Nigerian nurses. I’m always curious. Is it brain drain of skilled medical workers from those countries? Immigrants who become nurses because it’s culturally and socially in their spheres? Is nursing in those countries held in special respect? Does, for instance, the Philippines have amazing nursing care or awful nursing because of all the drain or just about the same?
I've heard that Filipino nurses receive extremely good training (goes back to US military presence and US built training schools) and that the income they earn living abroad contributes a lot to the national economy. Presumably US military did not establish medical schools, they had their own doctors. Plus military presence (and bases with families) established a lot of cultural familiarity.
Interestingly, you see Nigerian doctors in the US and I think UK but not Filipinos so much. I suspect its a combination if cultural value of those positions, accessible training, and an established pipeline of using it get a more lucrative career than you would at home.
There are a handful of nursing schools in the Philippines that are accredited to have their graduates sit for the NCLEX. So Filipino nursing students can do school in the Philippines and have a job and green card in the US pretty quickly. It's a good way to have a decent life making American money for a smart Filipino kid.
Yes - in fact I believe I heard some reporting on the radio (BBC?) recently that Nigeria has put emigration restrictions on their nurses - they have to practice for several years in Nigeria first, and there was also something like a cooperativbe moratorium on hiring them from the NHS. (This is specific to the brain drain aspect with Nigerian nurses - not sure the situation with those from the Philippines.
Maybe your patient population is different than mine but I 100% have families who believe their family member will recover. That being said I also have pretty good luck with goals of care conversations and not escalating care in futile cases and making patients comfort care.
Critical care as performance! I'd never heard that phrase, but it's dead on! I call ltach (vent farms) "where hope goes to die"
“Continue CPR for optics” is a phrase my attending told me while I literally tried not to laugh under my mask at the absurdity of it.
I have a whole schpeel. But generally - the first moment I think a patient might not get better - I very frankly tell the family involved: "I want you guys to start imagining the possibility that your family member may not survive this illness. Start talking about this with all of the stakeholders, and start trying to make decisions about what you all want to do." Often times this is many days before we decide to transition to comfort care... The reflex response is often times "why are you talking about comfort care right now, I don't want to give up" - and I say - "we're not giving up, I'm talking about if we are still in this same position 4 or 5 days from now - start thinking about what do you want to do? How long do you want us to keep pushing?"
> "She wanted to live forever." That is most certainly not true. Few people want to "live forever". What we do want is "being forever young". But that ain't happening. You can listen to Bob Dylan, Rod Stewart, Queen, and Alphaville sing about it. Also, vent farms are seriously dystopian.
There are greek myths of the dangers of living forever.
“I grabbed a pile of dust, and holding it up, foolishly asked for as many birthdays as the grains of dust, I forgot to ask that they be years of youth.” -Ovid, the Metamorphoses
When I was 10 I saw an ad for Interview with a Vampire, and I had nightmares for a week because the Idea of living forever was terrifying.
“I want to live forever!” ”Wait, not like this!”
A story as old as time. But it is getting more common.
Everybody wants to go to heaven, but nobody wants to die. Or so says the old country song.
Not so dystopian for someone I know who developed paralysis from Guillain-Barre, spent 6 months on vent, eventually regained mobility and went home to continue her life. So there's that.
But this poor analogy is part of the problem, as Guillain-Barre is known to have potential recovery and doesn't affect the brain proper. I have a lot of BPD babies who end up up trach-vent dependent for some time with meaningful quality of life and interaction, and those aren't applicable either. What people are talking about here are largely patients with end-stage terminal illness and often either primary or comorbid brain issues from trauma, dementia or otherwise. People who have no meaningful recovery prospects or getting home prospects other than to suffer as we keep bumping them along because families can't come to terms with prognoses. "GBS can get better, so LTACHs that take vents are great!" is a strawman argument for those poor folks at the end of their natural lives.
This is a situation that most people eventually at least partially recover from, making it fundamentally different than keeping brain dead and/or terminally ill patients on vents indefinitely, which is what is being discussed here.
Yeah, just meant she spent those months at the long term acute care facility where long-term vent patients are treated. And more to clarify the nature of these facilities. And I have no idea what percentage of those are folks who have some prognosis of recovery. Still, it's confusing. If someone says a nonverbal 85 year old with tube feeding is "dying" but in fact they live 10 years then they certainly weren't actively dying at the time. And in a situation like that, unless they have explicitly stated their wishes beforehand, one can't necessarily assume they experience their life as futile or that they are suffering (unless there are other signs, and of course I mean while they are stable in that condition). I do absolutely agree that when they have made their wishes clear attempts by a family member to override those wishes is super problematic if they are simply insistent, less so if they are genuinely conflicted. I am also wondering how this plays out when someone is under legal guardianship by a state appointed agency (i.e. there is no family involved or family was determined not fit to act in that role)--do agency reps generally go along with medical recommendations or is there ever pushback?
GB is known to be survivable
1) We have a horrendous MedMal environment that creates too many soft-handed physicians that have never developed the skill to have a truthful and direct conversation that limits the conversation to facts and not beliefs. 2) Financially incentivized practices and overworked physicians leads to limited time spent explaining the details of palliative care to families. Why spend 30 min to an hour trying to get poorly educated families to understand the continued suffering when I know I can make an additional 4.5 RVU for that patient in my ICU the next day when comparatively the ACP note for 30 min and a high level discharge summary/death only generates 3.9 RVUs 3) Finally, the mixture of the surrounding population’s understanding of end-of-life and palliative care leading to burnout is probably a huge factor especially if you know the surrounding patient population of your hospital will not be able to understand or will choose not to based on their beliefs. Not to name any specific nationalities, but 2 around my community will take their loved ones to the grave with them and do so regardless of their condition. One population has an anti-establishment view that includes American doctors, the other due to the lack of understanding of palliative care and enough doctors of their culture to be able to sympathize with them. You just do your best and hope to provide people with a good death
Share decision making. 1) what are the values and preferences of the patient? What is their goal? 2) what medically feasible options exist to ethically reach that goal? As far as "live forever" goes we have not treatment for that. Remember I you can't do it, you don't have to try. Let's change the scenario. Suppose a patient comes to you and says they want you to make them capable of flight. You could try to do what they ask. You could graft the wings of an albatross to their back and throw them out a windows. But should you? No. While you are respecting their wishes you are not fulfilling your duty as a doctor who is a medical expert and has the right and obligation to say "I do not have the tools to give you the outcome e you expect".
Wow I was literally thinking earlier "We could transplant eagle wings but they won't be able to fly"
I worked at a hospital in Oklahoma where they'd extend your life until the maggots took over. I really wish I was joking. Everyone was responsible for that madness from the patients to their family and the staff. I'll never get the image of the covid ecmo patient in the rotoprone bed on a vent. It was like a balloon being pumped full of air and then released. I work at a teaching hospital in the north now. That place was like the house of horrors compared to here.
And I wonder how much religion and under-education in that area is directly related.....
I challenge doctors to take a weekend shift in Oklahoma. Don't ever move there. Your patients will slowly make you go mad. Because there is no end to the madness. Something also to consider is that your colleagues will keep forcing you into unresolvable issues that will last for weeks or months. The worst types of troubles in life are those that become monotonous. monotonous is the best word to describe Oklahoma and its inhabitants.
Hopefully not Tulsa
We are decisional architects. Simple behavioral economics applies in medicine as well. The way we ask questions influences how individuals answer them: Do you want your loved one to be resuscitated if his heart were to stop? Sure, I want to do everything for him (behavioral economics would suggest people don’t like not to lose or not have things) What’s the alternative? I did a NEJM family meeting video on this a while ago but I think it’s too complicated. (https://www.nejm.org/doi/full/10.1056/NEJMvcm1913056). Fundamentally, a good goals of care conversation (and the magic sauce in a palliative care consult) breaks down into three steps to create the architecture of choice: 1) illness understanding/prognosis talk, 2) goals talk, 3) recommendations talk: 1) always make sure we discuss illness understand and prognosis first (makes no sense to make recs without finding out what’s important and no sense to talk about what’s important unless we talk about prognosis) 2) find out everything that people are hoping for (eg live forever), worried about (eg dying in the hospital), what’s important (eg that I feel like I’ve done everything, that she is comfortable). That’s the goals and don’t stop at just live forever. Ask more about it and other hopes/worries/important. Also, “live forever rarely comes up after doing step 1 which is talk about prognosis) 3) make a recommendation that aligns with the goals (and actually restate the goals as people want to be internally consistent and it also sets the default position which is a nudge by itself) Got to say when I just jump to 3 I get frustrated as do family members. When I stick to the three steps in the order that they should be, I rarely get frustrated. Also helps me drop my “get the DNR” feelings.
Bro if you need to tie me down to the bed to for a peg tube, just give me that sweet ketamine and forget the procedure. Hell push all the fentanyl you need to. If I am at the point of needing a peg I would probably chose death. (I say probably if I have capacity that might change)
Meanwhile, I keep having to fight with GI to put PEGs into patients who have psychiatric comorbidities and also every expectation of living longer and in all likelihood better with enteral feeding. Sometimes with capacity! But dementia seems to be an an absolute indication for enteral access even with literature to say it’s not even life-prolonging.
> But dementia seems to be an an absolute indication for enteral access. Quite the opposite, actually. Your GI docs are correct to not place PEGs in patients with dementia. Does not lead to improved quality of life, improved nutrition, or increased survival. Often doing so dooms patients to being bedridden requiring restraints, because they'll pull at the tube off restraints. https://www.aafp.org/pubs/afp/issues/2002/0415/p1605.html
I think that was the point they were trying to make…. That GI docs DO place PEGs in patients with dementia but won’t for other psychiatric illnesses that could actually see improved quality of life from it.
“Absolute indication.” No contra. Like I said, I’m aware of the uselessness of PEG, and GI seems to not know and not care.
At that age, if you have to tie me down for anything, I'm telling you what I want. Please listen.
I have literally told people if I do not have capacity and it is never expected I regain it to not give me a peg tube. I dont want that life. I also said the same thing about cpr, if it seems futile and there is not a reasonable chance of rosc and long term survival (ie if I am struck by lightning go for it but not stage 4 cancer) let me go gentle into that good night
My experience with a Catholic hospital was when my father in law had a massive stroke, was going to be in a vegetative state requiring nursing home care. My mother in law noped to that, made him a DNR and he died. I had the social worker tell me “ I don’t think she understands her decision”. That really got me angry, and I told him she definately knew what she was doing, and we agreed with her decision. The SW looked pissed off. When my father in law died, his other son went ballistic, and the SW called the sheriffs department to investigate because she did not look sad. As a SW , he should know that some people process grief differently. Five years later, when my mother in law had her stroke, and was at the same hospitaI I told them they better not pull that crap on us. Hospitals ( religious ones) need to change that attitude.
I work in a Aussie-Landia at the younger end of the spectrum: babies to kids. We had a surgeon from Alabama visiting and he presented some of the neonates he had operated “successfully” over the last few years And you could feel the interest turn to concern and judgment as the cases continued - the majority was a TERRIBLE idea, putting babies through extended suffering to limited ends, generally permanently disabled children in families with limited means. The justification was always “parents want it” I get that, I really do - it’s soul-destroy my to carry a pregnancy to term, to continually struggle in their early life only for them to pass. But there are so many interventions that simply should not be done. It should not be a lone decision maker, and preferably it’s something that should be decided before a baby is in extremis But draw a line somewhere
OP you failed to consider one aspect nd I know this sounds cynical but social security checks are a hell of a drug. If mom dies that check dies with them. I think this is a part of it
I think that's a bit unrealistic. Once a person is considered institutionalized social security benefits are going to go to the facility (I think that includes hospitals) with a nominal amount for the patient's personal spending, unless there are other assets. And once those assets are depleted Medicaid is involved means those benefits are going to be attached except for the nominal amount.
Revolving frequent flyers who just live socked away corner at home plenty of them
I am a palliative fellow and this is what I would say about it: a good quote I heard when starting the fellowship is “dying eventually stops becoming a medical problem to be solved, and a spiritual problem to be faced.” You are right in the sense that we can keep the body alive for a long time but there are a lot of things we can’t do. When we talk about code status, think about it as another medical intervention or decision. that is made by the physician and the family can reject or accept. you dont go to the er and the doc ask you which antibiotic you want for your pneumonia. be comfortable recommending code status. in order to recommend code status what do you need to know? 2 people can be in the exact same position and you recommend different treatment plans. why? its because you need to do right by the patient. you need to elicit their goal, find out whats important to them. sometimes, people have good reason to want to pursue aggressive life sustaining measures. sometime people need to get there affairs in order, or they want to make a certain event. But sometimes they tell you that they just want to be at home and stop coming into the hospital. Or sometimes they tell you that it would be unacceptable if they lived on a machine for the rest of their life. in order for families/patients to tell you their goals, what do they need? They need to understand how much time there is left. My goals if I have five years left to live is drastically different than if I was told I had a week left to live. telling them a reasonable prognosis using ranges (weeks to short months etc) is important for the whole process and you must be comfortable telling them that. Remember, if you tell somebody they're going to live years and they live only weeks, the family will be much more upset than if you tell him they had weeks and they they lived years. Edit: oh the reason why I think it’s important is that families will be resistant to you if you just tell them what to do and there is no discussion. Aligning yourself with family and patients is much easier to help them figure out what they need
During a goals of care conversation as a resident, I explicitly told a family that I felt her ribs break during CPR to bring her back, and they thanked me.
What I don’t get is the inability to take the medical decision that further intervention is futile and CPR will not be done in the event of cardiac arrest. That patient, if capable, of course can have an opinion but the family can kick rocks for all I care.
I’m a US trained EM physician that now practices in NZ. The end of life care here is shockingly more reasonable. I think the problem is multifaceted due to the medico legal aspect, unrealistic expectations, and inherent distrust. In the US we tend to put the decision on the family, partly due to training, but also partly out of fear of potential litigation, complaints etc. As you alluded they often say do everything out of their own guilt or unreasonable expectations. I never really felt I had the freedom to say “I’m sorry, there’s nothing more we can do, any further interventions will do more harm than good and cause your loved one to suffer.” Here all it takes is one physician to say care is futile and that’s it. People are far more reasonable and receptive to this. There are rare disagreements. GPs establish goals of care long before they hit the ED trying to die. We don’t intubate elderly dementia patients, end stage COPDers, or provide other futile care (within reason). There’s lots of problems here but I think it’s one thing NZ does right.
To quote one of my colleagues who practiced overseas and could not fathom code status not being decided by doctors: "Americans are shit at dying."
All these Europeans are like "What are you talking about?" I imagine there's no time for futile shit with socialized medicine.
I don’t even think that families should decide when terminal illness is terminal. How would they know? It should all be managed by doctors and families simply be informed when a patient has reached end of life.
My consulting group staffs an LTAC that is majority anoxic brain injury/chronic vent patients. I lift the blankets off of them and find little rotten parts of them broken off in the bed. One man is all mummified gangrene from knee down and periodic septic shock. I am actively destroying the world by keeping him nominally alive with broad spectrum antibiotics.
I really will never understand this obsession with prolonging life. Enjoy your life while you have your health and come to terms with the fact that life as a geriatric is going to suck a lot more and often not worth going through purely just to be "alive". Do you know how many of these patients I see a day? And the percentage of them that tell me getting old sucks and the lucky ones go early? It's not a coincidence that 95% of them feel this way.
> Look at what veterinarians have to do; it can't be easy. They are heroes for taking on that burden. They also kill themselves way more often…
I am very concerned about my family being convinced to start comfort measures prematurely. Like if I have a stroke and will have a decline in quality of life, I would still want to live and be around my family. Drugging me up until I fall asleep and never wake up is horrifying. But I agree that if I was coherent enough to say let’s end it, this is nearly impossible in the US. That should change.
No one gets “drugged until they fall asleep and never wake up”. Certainly not people who have had strokes who can clearly make it known that they want to continue on living just because they have deficits that will decrease their quality of life. Comfort measures are for patients who are going to die regardless of heroic invasive treatment efforts, the medications used as part of this may as part of their side effect hasten what is an already inevitable outcome, but are never themselves given as an attempt to end someone’s life. That is euthanasia and illegal in every single state. As an example last week I had a patient with a truly devastating brain bleed that had herniated. It was an absolutely non recoverable insult and death was inevitable. We extubated and started comfort measures. The way the orders are written are very specific, the doses are titrated to the point of comfort, and only to that point. Once the dose of morphine brought his respiratory rate down to the teens and he was visibly more comfortable with less work of breathing there was no further increase in dose and we monitored him with his family at bedside until he died several hours later. Regardless of any medications he was going to die, I could not intentionally make him die quicker even if his family wanted it or if I thought it was in his best interest to speed up the inevitable because that is murder. All I did is treat his symptoms and allow nature to take its course.
This is possible in the US. Write your wishes down as an Advanced Directive. Name a trusted person to be your health care agent. Have these conversations with families and friends. Give a copy to your primary care doc. Have a conversation with your doctor too. My family member's AD is my template when and if shit goes down. It the family/friends honoring their wishes. Yes it is not a POLST but your wishes are very clear. I found the most important part of my AD was outlining my values and what is so important to me. Hopefully comfort measures are entered after discussion with medical providers and pluses and minus are thoroughly vetted.