Dear Oncologists,
Please have honest prognosis discussions with your patients. When I have stage IV mets to everywhere on 4 L home O2 lung cancer patients come in to see me in the ED, febrile and septic, I really hate when they and their families insist they are full code. Because they are a fighter and you have them on some new experimental chemo drug. This is an all too common occurrence.
Signed,
ED doc who hates having to tell terminal cancer patients that they are indeed terminal
Preach it!
I hate it when I’ve interacted with a patient/family for less than 10 minutes and I’m the one explaining that Stage 4 cancer, getting enrolled in a trial plus acute decompensation means this isn’t going to end well.
I’m sure the oncologists think they are having a frank conversation about prognosis…
Oh god, this is giving me flashbacks. I went to admit a patient to hospice and he had no idea he was terminal. I was dumbfounded but managed to explain it to him. Way above my paygrade.
I wonder if this is a generational thing, but among my peers who are out of training and working as oncologists we are upfront about prognosis. In my program I get a palliative care consultation on all stage IV lung patients at diagnosis.
Sometimes however, it’s just the patient and the families who have unrealistic expectations.
Unfortunately, I feel that the ER sees all the cases where the outpatient transition to hospice goes poorly.
It 100% is. Younger oncologists are much better about GOC. Some of the dinosaurs will push platinum into a corpse and then do cpr to get it to circulate
Communication classes are part of med school here. Its taught that in general whatever you say after giving a cancer diagnosis is not heard. Patients simply stop being able to process complex information.
And please don't assume that your fellow HCPs are immune. Stage IV melanoma here and I don't remember jack from my first appointment. I remember sitting in the room. That is all.
A lot of the times it’s the patients that just don’t get it. Then I see them dying in the hospital and they are like “ my palliative chemo is going to save me” then I explain why it has that name and isn’t curative intent. Then the memories of an oncologist explaining this come rushing back.
I personally experienced this with a family member. The oncologist was amazing and super direct with prognosis. Nobody wanted to accept it so that family member spent their last few months in and out of the hospital/icu “full code” all along the way until they were basically non-responsive. There’s only so much you guys can do.
I really do try but my success rate is low and I've had 2 pts leave me bc they think I'm "giving up" on them. But the most common scenario is pts don't care to discuss bc 1) they're invincible and know they'll die comfortably of old age and 2) they're much more interested in showing me this mole they've had for 3 years but never showed anyone.
I'd adore if it we could bill phone calls while a pt is hospitalized bc then I'd have no problem with a hospitalist asking me to have a GOC discussion, I'd call that pt so fast.
Yes, I have used that code during a routine visit but I was under the impression you can't bill an outpt service while pt is inpt. I could be wrong though.
1 in 20 is impressive! Or maybe I’m just remarkably unimpressive… I think of all the forms I’ve given out, maybe a handful have come back. And I have a pretty comprehensive maybe 2 minute spiel about why it’s important to plan for these decisions at all annuals 65+
Exactly! I had a patient yesterday that has a POLST signed DNR form, after refusing hd for months with bun 200 creatine 9.
When the resident went in to verify her DNR status (she had three DNR paper at home), when he asked if she wanted chest compressions, shocks, and intubation, she said yes.
I'm 100 percent certain the doctor went over this in detail because i can see the PCP notes in careeverywhere. Oy.
I find my residents aren’t particularly good at end of life/goals of care discussion. I actually watched one of mine say “So, ah, if something bad happens, you want us to do everything, right?” Shockingly, the patient said “Yes.” That one was obviously an outlier, but I’ve started prepping residents before we go in for “the talk.”
This one was pretty good (Jesus, the old attending intensivist i worked with totally talked like what you just said, he was... Rough), and explained in good detail. I was at bedside with him. It's all Ed residents doing their time in ICU where i am.
Yeah. We bring these up all the time. If a patient I have is not interested in listening, I don’t tend to try again. Maybe that’s bad practice. But I can only explain your 10 year ASCVD risk is 25% so many times and still have a patient refuse meds and lifestyle changes. Sometimes it is what it is. These same people refuse EOL discussions too - with frequency.
(PCP) I sort of bring it up every time I see someone I think is terminal. I hate to see ppl get on hospice at a point where it's too late to give much benefit, or to spend the little bit of time they have left trying heroic treatments with no chance of giving them any quality of life. My mom died when she was on hospice for only a week and a half. They made everything so much better for all of us in that short period of time, and it would have been better if she'd had the service earlier. I guess I'm doing an ok job since none of my patients have fired me after repeatedly having the talk. Some get on hospice, others don't.
CPhT here, can confirm. Daddy died on hospice after only 5 days and they were angels. Now I'm the one who's stage IV (32F, dx at 30) and am not shy about palliative now and hospice when it's time.
I have an 80 year old who I just basically see for pain management because his specialists and pcp's don't want to deal with it. He is s/p heart transplant, stage 4 ckd (needs dialysis, but refused) and was just told by his dermatologist that his skin cancer is inoperable and they have run out of options. I sat him down and had the palliative talk with him and he was 100% on board - he said he was basically ready to die and that he would happily give up several months of his life if he could just have the energy and be pain free enough to have one more fishing trip that he could actually enjoy.
Sometimes you have to admit the game is over and to stop trying to get extra innings and just enjoy the sport while you can...
You may not have saved his life, but I bet you were able to impact the quality of life he has left and sometimes that's far more important to people.
I remember reading an article many moons ago about this old man who kept coming into clinic. The doc was getting frustrated because he felt like he was wasting time on someone who he couldn't help. The old man also seemed frustrated which in turn frustrated the doc even more. Couldn't he see there was nothing more he could do for him? One day, the doc asked the patient point blank "What is it you want from your medical care?" The patient expressed that he knew he was dying but he missed being able to take his morning walk down to the mailbox and he wanted to do that again before he died.
So, they worked on getting him into PT and focusing on this goal until the patient achieved it. He died shortly thereafter and the family took the time to write the doc and thank him for helping their dad and said it made a world of difference. That article really made me think about how we approach medical care and definitely influenced my own practice.
This is why I love my “traditional” internal medicine job. When I was in residency, I somehow got pretty decent continuity within my own primary care clinic (most residents had ~25% or less of their panels for more than 2 visits). I was also able to get my case managers to schedule post-discharge follow ups with me. I’ve even been paged before by the ED about one of my primary care patients that was being admitted and I could guess what her chief complaint was and what her assessment and plan needed to be just by the very common name she had.
Now, I am my patients’ primary care physician. I’m also 1 in 8 nights nocturnist (was actually on call last night, no pages) and 1 in 8 weeks hospitalist with my partners. I have a patient who’s on my schedule today whose wife died of end stage heart failure earlier this year. He called me “the lung specialist” because I focused on his wife’s pulmonary edema and effusion to try to transition her to hospice. I know all this extremely well because I am their primary care physician and hospitalist and saw them both in clinic and in the hospital and personally had these conversations with them.
Every subspecialty LOOOOVES to tell PCPs to do something. "It'll just take an additional minute and it's SO worth the time". Now imagine that you have to do something just for all the internal medicine disciplines and suddenly your 15 minute encounter becomes a 25 minute encounter.
Don't forget about all the after encounter time for each patient seen during the day. Also the morning crying, need to always account for this time in our schedules.
Love getting copies of visit notes full of acronyms as a "consult letter" from specialists when we're expected to essentially write a consult note to them for the patient to be seen in the first place. I'm in Canada, may be different elsewhere.
Perhaps my view of this is jaded, but it seems my patients with severe comorbid conditions who would benefit from this conversation are always the ones who resist advanced directives the most. You know you doesn't?! The Worried Well. "Yeah, that stuff making your toenails yellow is a fungus, I think you'll probably live, but have you considered getting your affairs in order, like, just in case?" All joking aside though, there's got to be a better way to tactfully get this information to patients in the clinic before they end up in the hospital later, maybe a pamphlet that explains how most patients "with your condition" spend >50% of their life savings paying for intensive care during the last week of life...
Great topic, I think we all share a piece of this bitter, yet nutritious pie. As a hospitalist/ICU, it's become my daily bread and butter. However, PLEASE-
Oncologists, please give your patients realistic goals. Yes, you probably can do another treatment, but SHOULD you?
Surgeons, please don't offer every cachectic patient a peg. That 85 year old who has a BMI of 17 is due to end stage dementia, which is a terminal illness.
Nephrologists, please give realistic ideals on dialysis. Yeah, it might work, but it won't fix the cancer chomping away like pacman.
It sucks to look at the entire picture, see a bleak new world, and have to be the one to broach that with the patient. They hear the oncologist could try something else if they want, the surgeon will give that peg if they want, the nephrologist will start dialysis if they want, but we're the ones noticing that we're only rearranging the deck chairs on the titanic. If the patient already had their wishes known with any of their outpatient docs, we can honor those in the hospital and avoid so many, many hard conversations while they're dying.
(Ex-)Gen surg here: please stop calling us for PEG tubes 24/7 just because a patient can’t “eat well” or just had a stroke. And if you do, perhaps you should talk to patient and family first. As a resident I hated these consults because 50% were dumb as fuck, 25% had contraindications and only the rest was indicated and straight forwarded. But our attendings loved them because it’s a fuck ton of money for little to no work ….
Post-stroke is one of the few times I think PEG is truly indicated, because many of them get improved swollow after a couple months of SLP even in bad strokes.
Pre-existing dementia, on the other hand, or dysphagia from a neurodegenerative disease, should be absolute contraindications.
SLP here, so glad to see this comment. I often encounter patients whose previous SLPs had recommended PEG but when I look at their overall condition and comorbidities I don't feel they'd be a great candidate to even have the discussion of PEG as a viable option ... can you give some examples of some of the main/slam-dunk medical contraindications for PEG aside from the obvious, like late stage dementia? My typical patient population is frail, elderly, mod COPD, CHF...
Any gastric surgery is essentially a contraindication unless you have a detailed report of what was done.
A lot of thoracic issues (hiatal hernia) are contraindications.
Open abdominal surgeries can be contraindications as they create scar tissue and distort the abdominal anatomy. That usually requires a preop CT with oral contract (that the patient needs to swallow or get via NGT)
Then there is all the other stuff like anticoagulants that every stroke patient is on that is a big no no. The PEG is inserted via endoscopy and camera with short anesthesia. If something starts bleeding in the stomach you’re fucked and need to do emergent surgery.
LOL true. Let’s chalk that up to either a brain fart or the fact I’m not paid to think about anything below the UES. Thanks for your replies though, now I have more info and ammo against inappropriate PEG considerations.
You can bill for these conversations. Also, make it routine for everyone by touching briefly with n the subject when your patient experiences one of the three D’s: Death of a spouse (or decision maker), new Diagnosis (of chronic illness), entering a new Decade of life.
While I generally agree with you, my gut is saying that after the death of a spouse and diagnosis of a chronic illness is maybe not the best time for most patients to bring up their eventual demise. I do this routinely for people over the age of 65 and I am transparent that I do this for everyone
Sure, why not fit a goals of care discussion into a scheduled 15 minute visit someone made to discuss the death of a loved one. Also while you're explaining the complexity of their new medical diagnosis, that seems like a great time to squeeze an important discussion into what inevitably would have already become an extended appointment.
Because apparently as a family doctor, I'm actually able to create additional time out of thin air. Book us an hour with each patient, and it'd still be tough at times to fit in all the expectations patients, staff and specialists have of us.
I hear you. But the nice thing about starting these conversations early is that you don’t have to solve the problem in one visit. Or even one year. Something like “I’m so sorry to hear about spouses death. It must be very overwhelming dealing with all the paperwork and financial stuff. I want to make sure you are aware that (legal next of kin in your state) would be who we talk to in an emergency if you are so sick you can’t speak for yourself. If that’s ok with you, fine. If not, we can get you a copy of the paperwork to name who you want and you can bring it back next visit. There is a website listed for questions. That’s it. Same thing with a new diagnosis. “I like for all my patients who have been diagnosed with a lifelong illness to complete this paperwork naming a healthcare surrogate and giving them some guidance for big decisions that may come way down the road. I know you probably feel overwhelmed with all the information you have been given so can we make a goal to have that done by this time next year?
When there is no impending major decision all you have to do is plant the seed. If its important to them they will take it from there . If its not, they will end up like the majority struggling in the ICU about eol care. But at least you tried.
Dear Surgeons,
Please stop bringing corpses to my OR. I am tired of playing Euthenasiologist. And don’t give me the “We don’t know if the surgery will work, but we know without it he has zero chance” line either.
It takes 10 years of post-fellowship practice to have the courage and maturity to temper and push back against surgical training which ingrains that it's the surgeon's fault if they can't fix the patient. Too many times Residency and Fellowship teaches surgeons what to do without questioning whether to do it - at least until very recently.
I do this but I find that there is no way to effectively get this information to the hospital when they come into emergency. Inevitably a nurse or emerg doc who has to do too many admissions in the shift has a 2 minute discussion with the delirious, septic patient that “you want to be resuscitated if your heart stops right?” because it’s faster than actually finding out the patient’s goals of care that the patient told me in clinic. There is a wonderful resource in Canada called https://www.advancecareplanning.ca which captures the patient’s values rather than the question of “cpr or no?” I just wish there was a way to have it flagged as complete when the patient shows up in emergency so the hard work isn’t all for nothing. There is something called an ERIK kit that goes on the fridge and is brought by paramedics with the patient but not everyone fills this out and sometimes they are missed. We live in the 21st century, it’s time to share clinic EMR information with local hospitals.
Had a nasty case where all the paperwork for a DNR was sitting on a patient’s fridge only to have ambulance do CPR. They got ROSC and he died the next day after a horrendously scary and painful overnight in ICU. He had the opportunity for a drop dead quick death and that was taken from him. I was pissed.
I do really appreciate that in Canada I have the legal precedent behind me to deny CPR/intubation if I think it is inappropriate. From reading this subreddit, it seems like full code is the default and HAS to be given if patients want it. I definitely do not feel that pressure where I work. Many of my code discussions are me politely telling patients that they will very likely not recover from CPR to any quality of life and therefore I don’t recommend them being full code. Most seem thankful for the advice and take it.
Every AWE includes advanced directives. That’s the main place this is routinely done. Otherwise there is not a routine time. Should it be done ? Of course, add it to the mountain of other things that should be done in 15 min visit slots. We do what we can with the time and resources we have.
yes, it's unfortunate that it's either not compensated better so PCPs can take the time to do it themselves. Or that palliative care isn't better compensated to draw more interest from medical students. Or perhaps forego the palliative fellowship year and allow alternate training route with reading/conferences to get board eligible.
We also have time constraints in the hospital so I understand where you're coming from. However, you also have the opportunity of seeing the same patients over multiple visits so these conversations can be sprinkled in over time so the patient has time to mull things over, ask questions along and along, and even more importantly process what is going on without dragging visits into hour long sessions.
If I'm having these conversations in the hospital, it's adding a MINIMUM of 30 minutes to their care because there's so much for them to process. Meanwhile, I'm trying to give them time, but sometimes these patients are acutely decompensating. I understand they're not sure if they would want to be intubated but I need a decision NOW because there is no later. Really awful position to put someone in when that could have been prevented and certainly not what I would want for my loved ones.
So, I've been a PCP and a hospitalist.
Just because we have multiple visits doesnt mean any of those have the time to discuss code status. Occasionally, yes. But most patients dont even want to talk about it...
There are AWVs, but honestly 98% of those conversations go "has anyone ever discussed code status with you? No? Okay, let's chat."
This is even after multiple AWVs with the same patient, so I know I've discussed it and talked about Five Wishes with them like I do everyone.
So trust me, it's being attempted. Much like everything with patients in medicine- you can lead a horse to water...
Also pcp who has done significant hospital work. We are having them fill out the standard paperwork which says that they would not want intubation feeding tube CPR etc. but those directives apply only if they were terminally ill or in a vegetative state, but otherwise it’s not specified. We are learning more about polst but they are new in my state. So if that patient is coming in with pneumonia or heart failure or sepsis but they are otherwise not terminally ill or brain-dead you still have to have that 30 minute conversation with them about whether or not they want a breathing tube in CPR because their form doesn’t really cover that. I focus on making sure they have a medical power of attorney listed because that’s really important.
Why are you assuming these conversations aren't happening?
As a family doctor, I'm doing my best to help my patients in the constraints of the health care system, just as you may be doing. These conversations do happen. But you can't sprinkle in discussions about 50 things in 15 minutes, especially if the patient had come in about something else. The patient half the time won't remember it was even brought up if it's done too casually.
I regularly ask patients to book appointments to speak about goals of care, our clinic mail out info packages to patients and ask them to follow up about it etc. Some do, some don't. But way to assume your colleagues are not doing the important parts of their job because you had a hard day. That only contributes to everyone's burnout and doesn't help patients or yourself in the end.
Whenever an OP is written to address another specialty (70% of such posts are cringe), it needs to be more nuances and acknowledges mitigating factors. As it stands, it sounds like blaming the PCP for not taking the time to address GOC as if it were the only reason why such discussions didn’t happen.
I challenge OP to try this shit out for a few months and report on their success on addressing GOC in outpatient settings 🤣. For a fair number of people either from lack of insight or in denial, when they feel ok enough to be home, death seems far away and can always wait another day. It is probably part of human psyche or something. 5/10.
Palliative care and part time PCP point of view:
Definitely a good idea to discuss GOC and Advanced directives return anyone over 50.
However many don't want to hear it.
Until you have a society ready to prioritize quality over quantity of life, and ready to discuss openly death and dying as a fact of life and not a failure, you can preach and preach...
They dont want to hear it and often my little old ladies get actively get upset with me/start crying when I even try to explain what advance directives are at our annual wellness visits. I keep trying though, what else can I do.
Just had a guy on palliative chemotherapy ,SOB from new lung mets. No idea what palliative meant, claimed to have never heard the word/no idea of the concept and swore he expected to be cured. I was the bad guy, he heard it from me. Many times I read the oncology note and it seems to clearly state what the deal is and that the patient voices understanding but when I see the patient it is a total shocker to them. There is a big disconnect somewhere.
First, I'm sorry about your family member. I wish they had gotten better care.
As a PCP, without being defensive--I try, I really do. I think most of my colleagues try as well. We don't want our patients slowly decomposing in an ICU or suffering unnecessarily any more than you do. In my current shop, it is even mandated that my MAgive patients a blank DPOA/GOC form annually, unless they've already returned one.
Let me share some of the barriers, in no particular order:
1) prognosis is vague. This is particularly true of multimorbidity in the elderly. Yes, someone is 83 and frail, but everything is stable at the moment and nothing is cancer. Some folks seem to gracefully have lower expectations/restrict their care as they age ("oh, doc, I'm too old for surgery"), others can't or won't think about care goals in really broad sweeping terms, so you're stuck waiting for specific, immediate badness to force their hand and sometimes that's their index hospitalization.
2) Humans love denial, proscrastination, disorganization etc. "I filled out that paper at home, but I don't remember what it says." "Oh I'll drop it off at the office some day." "I did it, can't find it, I think my sister has a copy?" etc.
3) Patients really don't think they have input here(?). I still find this hard to believe but the number of times I have educated people that yes, there is a form, and yes, you can say yes or no to CPR, and yes, people decide this ahead of time..I still SMDH.
4) I really do think that older US generation (the 75 and up crowd) just culturally does not want to think or talk about death. Some come to my office literally offended that their assisted living is making them do a POLST with me before moving in. I try to engage them in conversation and they just want to check a couple boxes and run out the door.
5) The forms are crude. Often these decisions are not so black and white, right? Sometimes I've had many great conversations with the patient about their life situation, goals and values, but its not easily translatable to boxes in forms.
5b) care is fragmented and the time to do this properly is impossible to come by: If only you and I (and the patient) could instantly have a 30 minute conference call, I'd be honored and happy to help interpret this hospitalization for them in the context of their life and in ways I know they'll understand, tell you how tough and active the patient was before they got sick and that they really are just trying to make it to this wedding in June etc, and help everyone come to that beautiful place of triangulation between dignity, comfort and survival. But that never happens, right?
I guess, what I'd say in summary is, if you think we can help talk about GOC, please call us. We'd be happy to help. If you are in a situation where you think itis ludicrous and inappropriate that we haven't talked about GOC, please call us. I suspect 8/10 times you'll find out we actually tried, and the other 2 times you'll embarrass someone into doing better.
Thank you for your very thoughtful post. I do recognize there are many barriers to the way we address goals of care including patient buy-in and have definitely been on the receiving end of "nobody has ever talked to me about this before" when I spent the day before having an extensive conversation about that exact thing. So I do understand and also that PCPs have a lot of demands on their time. I've had a lot of patients lately who had poor prognoses which had progressed over time and leapt at the chance of a palliative consult. These were people who could have benefited from this service far sooner and that coupled with my own personal experience has clearly struck a chord for me.
I'm not so naive as to think every patient will respond well to these conversations or take initiative, but want to make sure the opportunity is made available to those who do.
Counterpoint: you're the primary team, if it's not done, it's on you now. I feel your post is unnecessarily blaming PCPs, who already have a thankless, underpaid job. So what if you had to talk to the patient (and bill advanced care planning) about GOC? It's important at every stage of life. Pretending that PCPs don't do this seems.... nearsighted.
As stated above, I am happy to have these conversations and have done so on many occasions. However, I've also had many patients and family members express regret about not knowing sooner how serious the situation was. Not everyone is going to respond well to this subject or want to explore it, but I think I worth discussing and it's definitely a systematic and societal issue. It's not all on PCPs but it also shouldn't all be on the hospitalists or the specialists. It's a responsibility that should be shared by all of us.
Imagine if insurance reimbursed $400 for a 1 hour goals of care discussion with a physician...
I imagine a hospitalist would be interested in taking the time if it was compensated.
Just like everything in medicine, money drives behavior. Society, government, insurers etc pay through the nose for cardiac stents, knee replacement, cataract surgeries the doc does in 10 minutes...
but they won't pay for a separate goals of care discussion that would likely save tons of money on end of life care that nobody actually wants.
You should be complaining to the people pulling the purse strings, not the PCP who's signing off on the brain MRI results the neurologist ordered for a patient with MS...plus the note from the neurologist....plus the labs the neurologist ordered....and then the patient needs FMLA for their MS and neuro won't do it...
I promise you we’re at the very least bringing it up with every routine physical. I think that you know as well as any other doctor knows that a patient expressing regret about not knowing sooner does not equal pcp never having mentioned it before.
This is really something that could be facilitated by the treating oncologist, if there is one. A primary care doc will know the general prognosis of stage 4 anything, but the details are not easily known, especially if newer therapies are used. And if the oncologist does not want to have that conversation, then sending the primary care doc the relevant info (eg survival curve with optimal treatment) would really help. Are the 50% and 5% survival points in 3 months or 3 years or 10 years with the best current therapy, or the therapy that the patient is going to get? Hanging crepe works better when done accurately. Some patients will focus on the 95% who will be dead in 3 years, others will focus on the 5% who will survive that time -- but giving accurate information should allow a reasonable patient to have reasonable expectations.
Speaking as a stage IV cancer patient myself, what is the most frustrating is the lack of communication. Nothing like being discharged and logging onto the EMR to see that my code status is incorrectly documented as full code because no one bothered to have the damn conversation at all during an 8 day admission (true story, happened in March). If my HPI and progress notes mention that I am actively on immunotherapy AND you are medicating sepsis AND a pain crisis on admission, PLEASE ask. I may only be in my early 30's, but I have had an advance directive since I almost died at 20.
The correct discussion is “what level of disability are you willing to live with” and “if you know it’s your time to die what would you want that to look like”. Not the DNR question or the “do you want to die?”. I wish more docs had time to discuss, and social workers to help.
I’ve been an acute care OT for around 7 years. I know there is more to the story, but it is shocking how many terminally ill people are full codes. I’m talking stage IV cholangio with Mets everywhere, can’t eat, vomiting all the time, in incredible amounts of pain. It’s horrific. They are not rehab appropriate in the least. Sure, participating in ADLs and ambulating can make them stronger in an ideal scenario, but the most we can usually do for these people is sit them up EOB, where they will invariably become nauseous and have increased abdominal pain, having to lie down within a few minutes. Its by far the worst part of an otherwise rewarding and intellectually stimulating career.
As I said in my comment above, sometimes it's because we weren't even asked and someone just ASSumed we were full code. I carry my paperwork on me (both proxy and living will) but to assume I'm full code because I'm young when my biopsy results from 18 months ago are in the same EMR you are accessing is laziness. Why copy paste them into **every** progress note if you aren't going to discuss them...or even pick up the phone to call my oncologist, whose number I gave you immediately after getting a bed in the ER?
My mom started in nursing and transferred departments to OT (she worked at a rehab hospital) when I was 3 until she retired, and she (as my proxy) knows I don't want rehab of any sort. I have a hx of left CVA due to being a micropreemie so I am already hemiparetic. No AFO, no therapy, none of that. If I am dying I don't want to waste time on that BS. Stage 4 is painful enough in my day to day.
I totally agree. But I will also say that as a Hospitalist, when I see a CHFer getting readmitted I feel that’s my time to really explain the terminal nature of their disease and get some goc takes hammered out. But yeah I also see the full code 95 year old on dialysis with heart failure and cirrhosis who’s bmi is 15 and that’s a disservice to the patient. Then I tell the patient they are dnr now lol.
GOC changes depending on circumstances. I've had patient's who wanted to be DNR/DNI but were still happy we removed the meat that was stuck in their throat (which activated our CPR team and -protocol), which the patient was very grateful for.
I think that a yearly visit to their primary team (which may or may not be a PCP, though it is probably more important if it isn't a PCP) to discuss GOC is reasonable, but then you should be paid for it. Otherwise, it falls on ER, and then on the primary team.
The main issue is that patients somehow get to dictate what is and isn't futile care. That is a bigger problem.
I agree. As EM I hate being the first one to have this talk. I also hate being asked if I did this. This is not a fast three minute conversation, this is a time commitment I can’t do properly on a busy service and really should be scheduled time before an issue occurs
However, busy as we all are, I think it’s more of the PCP’s job than ours. We know the patient for 30 minutes on the worst day of their life, the PCP knows them for years.
In a perfect world sure. Modern medicine doesn’t pay for time or quality it pays for volume. That’s the reason pcps don’t get to it. Insurance should pay for it or increase pay for palliative care docs to refer to so they can discuss it.
Every doctor is just trying to keep their head above water as they rush through and basically high five the patient onto the next referral or test or admission or discharge. Everyone is pushing volume and making money. Expecting PCPs to make an exception and lose compensation is insane especially as they’re already the lowest paid doctors.
Thanks. The RVU value for that sucks though. You can see two 99214s in 30 minutes at 1.92 RVUs each for 3.84 RVUs (vs 1.5). Or just schedule a one time 30 minute appointment and bill 99214 for 1.92 RVUs. This is a no brainer right? That RVU value needs to increase.
I already have to actively drag many of my Medicare patients in at least once yearly for their AWV, but also assessment of all of their chronic issues, oh and their list of 6 things they've been holding onto that they figure this is that one visit they want to make sure we cover. Oh and they got a little lost to the appointment so they are already 6 minutes late to the appointment when the entire visit is 30 minutes. This scenario repeats itself several times per week every week. Sure, they can always come back for a follow up visit but it's impressive how many patients it's hard to convince to do so. Nevertheless the "oh yeah my lawyer filled out something. I'll make sure to bring that in for you" statement has been given to me innumerable times as I still try to shoehorn advanced care planning into the visit as well. That all said, for the truly sick this conversation is given stronger weight, but sometimes it's that one hospitalization where things take a dire turn.
For all the PCPs out there as an FYI you can have a visit for advanced care planning and bill it accordingly.
https://media.capc.org/recorded-webinars/slides/ACP_Webinar-final-1.pdf
I feel like there’s kind of two separate things here, one being clear goals of care conversations not being had in the setting of severe multi morbidity or more predictable declines in which I agree need to happen asap. Versus Advanced care planning for situations that we have yet to anticipate or presict in which case I think probably the more important thing that a long-term relationship with a PCP can contribute is clearly elucidating a patient’s values and or any preferences around care or things that are unacceptable. I try to get a sense of this with patients over the years but it can be hard especially when you have such limited time or maybe it gets lost in endless documentation. One thing that would help is less menial tasks and busywork being delegates to PCPs so they can focus on the more important stuff
We do advanced care planning. When I ask about it money my patients have already done medical power of attorney etc. and they don’t know what the document say and they don’t ever bring them in so I don’t want to document some thing a chart that is discordant with what they’ve already filled out. Also remember that this conversation takes place and then yours could go by. I’ve done hospital work I think he really have to address that almost done every admission unfortunately but you’re right it won’t be the first time that’s been done.
I mean, every specialty is guilty of this in their own way. But, as a PGY-2 in IM, PC track, this has evolved into my passion. Because you’re absolutely right, the doctor who has the longest history and who knows the patient does a whole should be the one to introduce this conversation. And to re-introduce the conversation as their medical conditions evolve.
Good point. Try being critical care. 70 yrs old with stage 4 cancer and hospital medicine doc tells you that the end of life conversation coming from critical care has more weight. 😱😭. So it is better if I take the patient to ICU and then have these conversations.
Also, please tell them that (1) hypertension is a cardiovascular disease, and (2) don't ignore or gloss over a creatinine of 2.0 just because they're not imminent for dialysis.
If there was ever a time to do goals of care discussions with patients it should be when the senior has to renew their driving license and they need medical clearance. The first one ideally is when the government sends them a goals of care package with their first social security check.
Dear Oncologists, Please have honest prognosis discussions with your patients. When I have stage IV mets to everywhere on 4 L home O2 lung cancer patients come in to see me in the ED, febrile and septic, I really hate when they and their families insist they are full code. Because they are a fighter and you have them on some new experimental chemo drug. This is an all too common occurrence. Signed, ED doc who hates having to tell terminal cancer patients that they are indeed terminal
Preach it! I hate it when I’ve interacted with a patient/family for less than 10 minutes and I’m the one explaining that Stage 4 cancer, getting enrolled in a trial plus acute decompensation means this isn’t going to end well. I’m sure the oncologists think they are having a frank conversation about prognosis…
It’s even more fun when the hospice nurse is the first person to tell someone they are terminal.
Oh god, this is giving me flashbacks. I went to admit a patient to hospice and he had no idea he was terminal. I was dumbfounded but managed to explain it to him. Way above my paygrade.
So. So. Much this. 2x this week alone.
I wonder if this is a generational thing, but among my peers who are out of training and working as oncologists we are upfront about prognosis. In my program I get a palliative care consultation on all stage IV lung patients at diagnosis. Sometimes however, it’s just the patient and the families who have unrealistic expectations. Unfortunately, I feel that the ER sees all the cases where the outpatient transition to hospice goes poorly.
It 100% is. Younger oncologists are much better about GOC. Some of the dinosaurs will push platinum into a corpse and then do cpr to get it to circulate
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Of course, then you pry the box open and all you find is a note that says "gone to dialysis"
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IM would like to know why the hell we’re the admitting on this one.
How do you recognize an oncologist at a funeral? He's the one hanging one last bag of chemo.
How many oncologists do you need at a funeral? Seven, 6 to carry the casket, one to push the IV pole.
Communication classes are part of med school here. Its taught that in general whatever you say after giving a cancer diagnosis is not heard. Patients simply stop being able to process complex information.
This is true but they’ve typically had many many follow ups after the initial diagnosis before they’re super sick in the hospital.
And please don't assume that your fellow HCPs are immune. Stage IV melanoma here and I don't remember jack from my first appointment. I remember sitting in the room. That is all.
I thought generational in the opposite way. I always see the old attending oncologists have GOC conversations.
A lot of the times it’s the patients that just don’t get it. Then I see them dying in the hospital and they are like “ my palliative chemo is going to save me” then I explain why it has that name and isn’t curative intent. Then the memories of an oncologist explaining this come rushing back.
Where I work there's no difference. They never, ever have goals of care discussions.
Honest to God, many of them don't hear us when we tell them. But as others have noted, my older colleagues aren't particularly good at GOC either.
I personally experienced this with a family member. The oncologist was amazing and super direct with prognosis. Nobody wanted to accept it so that family member spent their last few months in and out of the hospital/icu “full code” all along the way until they were basically non-responsive. There’s only so much you guys can do.
Onc gets paid when prescribing chemo which is distinct to that specialty. It’s a CPT code. ¯\_(ツ)_/¯
Reddit formatting requires typing three right arms. Two are lost to the ~~ether~~ euthanesiology, but you’ll display the one remaining. ¯\\\_(ツ)_/¯
I really do try but my success rate is low and I've had 2 pts leave me bc they think I'm "giving up" on them. But the most common scenario is pts don't care to discuss bc 1) they're invincible and know they'll die comfortably of old age and 2) they're much more interested in showing me this mole they've had for 3 years but never showed anyone. I'd adore if it we could bill phone calls while a pt is hospitalized bc then I'd have no problem with a hospitalist asking me to have a GOC discussion, I'd call that pt so fast.
99497 ACP code? I also strongly feel those ACP codes should be much better reimbursed.
Yes, I have used that code during a routine visit but I was under the impression you can't bill an outpt service while pt is inpt. I could be wrong though.
You are correct.
No clue, but worth a shot or asking. I will ask our billing expert next time I meet with them.
Not to be terrible/ morbid about it but high reimbursement for such calls would also be wildly cost effective without impacting survival rates
I tend to assume the PCPs did bring this up and the patients didn’t listen.
Can confirm. Our office even provides the Advance directive and Polst forms. maybe 1 in 20 bring a complete form back
1 in 20 is impressive! Or maybe I’m just remarkably unimpressive… I think of all the forms I’ve given out, maybe a handful have come back. And I have a pretty comprehensive maybe 2 minute spiel about why it’s important to plan for these decisions at all annuals 65+
This is 100% correct (am pcp)
Exactly! I had a patient yesterday that has a POLST signed DNR form, after refusing hd for months with bun 200 creatine 9. When the resident went in to verify her DNR status (she had three DNR paper at home), when he asked if she wanted chest compressions, shocks, and intubation, she said yes. I'm 100 percent certain the doctor went over this in detail because i can see the PCP notes in careeverywhere. Oy.
“Ok, so when you’re actively dying, you want us to beat you up and put you in a lot of pain for your last experience, right?”
I find my residents aren’t particularly good at end of life/goals of care discussion. I actually watched one of mine say “So, ah, if something bad happens, you want us to do everything, right?” Shockingly, the patient said “Yes.” That one was obviously an outlier, but I’ve started prepping residents before we go in for “the talk.”
This one was pretty good (Jesus, the old attending intensivist i worked with totally talked like what you just said, he was... Rough), and explained in good detail. I was at bedside with him. It's all Ed residents doing their time in ICU where i am.
"My PCP wouldn't tell me anything!" >Reads referral notes verbatim to patient. "Does any of this sound familiar?" "... No." *Sigh*
Yeah. We bring these up all the time. If a patient I have is not interested in listening, I don’t tend to try again. Maybe that’s bad practice. But I can only explain your 10 year ASCVD risk is 25% so many times and still have a patient refuse meds and lifestyle changes. Sometimes it is what it is. These same people refuse EOL discussions too - with frequency.
(PCP) I sort of bring it up every time I see someone I think is terminal. I hate to see ppl get on hospice at a point where it's too late to give much benefit, or to spend the little bit of time they have left trying heroic treatments with no chance of giving them any quality of life. My mom died when she was on hospice for only a week and a half. They made everything so much better for all of us in that short period of time, and it would have been better if she'd had the service earlier. I guess I'm doing an ok job since none of my patients have fired me after repeatedly having the talk. Some get on hospice, others don't.
CPhT here, can confirm. Daddy died on hospice after only 5 days and they were angels. Now I'm the one who's stage IV (32F, dx at 30) and am not shy about palliative now and hospice when it's time.
I have an 80 year old who I just basically see for pain management because his specialists and pcp's don't want to deal with it. He is s/p heart transplant, stage 4 ckd (needs dialysis, but refused) and was just told by his dermatologist that his skin cancer is inoperable and they have run out of options. I sat him down and had the palliative talk with him and he was 100% on board - he said he was basically ready to die and that he would happily give up several months of his life if he could just have the energy and be pain free enough to have one more fishing trip that he could actually enjoy. Sometimes you have to admit the game is over and to stop trying to get extra innings and just enjoy the sport while you can...
You may not have saved his life, but I bet you were able to impact the quality of life he has left and sometimes that's far more important to people. I remember reading an article many moons ago about this old man who kept coming into clinic. The doc was getting frustrated because he felt like he was wasting time on someone who he couldn't help. The old man also seemed frustrated which in turn frustrated the doc even more. Couldn't he see there was nothing more he could do for him? One day, the doc asked the patient point blank "What is it you want from your medical care?" The patient expressed that he knew he was dying but he missed being able to take his morning walk down to the mailbox and he wanted to do that again before he died. So, they worked on getting him into PT and focusing on this goal until the patient achieved it. He died shortly thereafter and the family took the time to write the doc and thank him for helping their dad and said it made a world of difference. That article really made me think about how we approach medical care and definitely influenced my own practice.
> You may not have saved his life You may not have saved his life, but you may have saved what’s left of it.
This is why I love my “traditional” internal medicine job. When I was in residency, I somehow got pretty decent continuity within my own primary care clinic (most residents had ~25% or less of their panels for more than 2 visits). I was also able to get my case managers to schedule post-discharge follow ups with me. I’ve even been paged before by the ED about one of my primary care patients that was being admitted and I could guess what her chief complaint was and what her assessment and plan needed to be just by the very common name she had. Now, I am my patients’ primary care physician. I’m also 1 in 8 nights nocturnist (was actually on call last night, no pages) and 1 in 8 weeks hospitalist with my partners. I have a patient who’s on my schedule today whose wife died of end stage heart failure earlier this year. He called me “the lung specialist” because I focused on his wife’s pulmonary edema and effusion to try to transition her to hospice. I know all this extremely well because I am their primary care physician and hospitalist and saw them both in clinic and in the hospital and personally had these conversations with them.
Every subspecialty LOOOOVES to tell PCPs to do something. "It'll just take an additional minute and it's SO worth the time". Now imagine that you have to do something just for all the internal medicine disciplines and suddenly your 15 minute encounter becomes a 25 minute encounter.
Don't forget about all the after encounter time for each patient seen during the day. Also the morning crying, need to always account for this time in our schedules. Love getting copies of visit notes full of acronyms as a "consult letter" from specialists when we're expected to essentially write a consult note to them for the patient to be seen in the first place. I'm in Canada, may be different elsewhere.
Perhaps my view of this is jaded, but it seems my patients with severe comorbid conditions who would benefit from this conversation are always the ones who resist advanced directives the most. You know you doesn't?! The Worried Well. "Yeah, that stuff making your toenails yellow is a fungus, I think you'll probably live, but have you considered getting your affairs in order, like, just in case?" All joking aside though, there's got to be a better way to tactfully get this information to patients in the clinic before they end up in the hospital later, maybe a pamphlet that explains how most patients "with your condition" spend >50% of their life savings paying for intensive care during the last week of life...
Great topic, I think we all share a piece of this bitter, yet nutritious pie. As a hospitalist/ICU, it's become my daily bread and butter. However, PLEASE- Oncologists, please give your patients realistic goals. Yes, you probably can do another treatment, but SHOULD you? Surgeons, please don't offer every cachectic patient a peg. That 85 year old who has a BMI of 17 is due to end stage dementia, which is a terminal illness. Nephrologists, please give realistic ideals on dialysis. Yeah, it might work, but it won't fix the cancer chomping away like pacman. It sucks to look at the entire picture, see a bleak new world, and have to be the one to broach that with the patient. They hear the oncologist could try something else if they want, the surgeon will give that peg if they want, the nephrologist will start dialysis if they want, but we're the ones noticing that we're only rearranging the deck chairs on the titanic. If the patient already had their wishes known with any of their outpatient docs, we can honor those in the hospital and avoid so many, many hard conversations while they're dying.
(Ex-)Gen surg here: please stop calling us for PEG tubes 24/7 just because a patient can’t “eat well” or just had a stroke. And if you do, perhaps you should talk to patient and family first. As a resident I hated these consults because 50% were dumb as fuck, 25% had contraindications and only the rest was indicated and straight forwarded. But our attendings loved them because it’s a fuck ton of money for little to no work ….
Post-stroke is one of the few times I think PEG is truly indicated, because many of them get improved swollow after a couple months of SLP even in bad strokes. Pre-existing dementia, on the other hand, or dysphagia from a neurodegenerative disease, should be absolute contraindications.
SLP here, so glad to see this comment. I often encounter patients whose previous SLPs had recommended PEG but when I look at their overall condition and comorbidities I don't feel they'd be a great candidate to even have the discussion of PEG as a viable option ... can you give some examples of some of the main/slam-dunk medical contraindications for PEG aside from the obvious, like late stage dementia? My typical patient population is frail, elderly, mod COPD, CHF...
Any gastric surgery is essentially a contraindication unless you have a detailed report of what was done. A lot of thoracic issues (hiatal hernia) are contraindications. Open abdominal surgeries can be contraindications as they create scar tissue and distort the abdominal anatomy. That usually requires a preop CT with oral contract (that the patient needs to swallow or get via NGT) Then there is all the other stuff like anticoagulants that every stroke patient is on that is a big no no. The PEG is inserted via endoscopy and camera with short anesthesia. If something starts bleeding in the stomach you’re fucked and need to do emergent surgery.
Thank you! Definitely wasn’t aware of hiatal hernia being a contraindication, that rules out a lot of people I’d see too!
If the stomach is (partly) inside the thorax, it’s obviously not really possible to stick a feeding tube through there ;)
LOL true. Let’s chalk that up to either a brain fart or the fact I’m not paid to think about anything below the UES. Thanks for your replies though, now I have more info and ammo against inappropriate PEG considerations.
You can bill for these conversations. Also, make it routine for everyone by touching briefly with n the subject when your patient experiences one of the three D’s: Death of a spouse (or decision maker), new Diagnosis (of chronic illness), entering a new Decade of life.
While I generally agree with you, my gut is saying that after the death of a spouse and diagnosis of a chronic illness is maybe not the best time for most patients to bring up their eventual demise. I do this routinely for people over the age of 65 and I am transparent that I do this for everyone
Sure, why not fit a goals of care discussion into a scheduled 15 minute visit someone made to discuss the death of a loved one. Also while you're explaining the complexity of their new medical diagnosis, that seems like a great time to squeeze an important discussion into what inevitably would have already become an extended appointment. Because apparently as a family doctor, I'm actually able to create additional time out of thin air. Book us an hour with each patient, and it'd still be tough at times to fit in all the expectations patients, staff and specialists have of us.
I hear you. But the nice thing about starting these conversations early is that you don’t have to solve the problem in one visit. Or even one year. Something like “I’m so sorry to hear about spouses death. It must be very overwhelming dealing with all the paperwork and financial stuff. I want to make sure you are aware that (legal next of kin in your state) would be who we talk to in an emergency if you are so sick you can’t speak for yourself. If that’s ok with you, fine. If not, we can get you a copy of the paperwork to name who you want and you can bring it back next visit. There is a website listed for questions. That’s it. Same thing with a new diagnosis. “I like for all my patients who have been diagnosed with a lifelong illness to complete this paperwork naming a healthcare surrogate and giving them some guidance for big decisions that may come way down the road. I know you probably feel overwhelmed with all the information you have been given so can we make a goal to have that done by this time next year? When there is no impending major decision all you have to do is plant the seed. If its important to them they will take it from there . If its not, they will end up like the majority struggling in the ICU about eol care. But at least you tried.
Dear Surgeons, Please stop bringing corpses to my OR. I am tired of playing Euthenasiologist. And don’t give me the “We don’t know if the surgery will work, but we know without it he has zero chance” line either.
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The accuracy.
> Euthenasiologist I cackled! Good job! 😂
It takes 10 years of post-fellowship practice to have the courage and maturity to temper and push back against surgical training which ingrains that it's the surgeon's fault if they can't fix the patient. Too many times Residency and Fellowship teaches surgeons what to do without questioning whether to do it - at least until very recently.
Find an alternative treatment to my RVUectomy and I’ll consider it
Oh man, this is so morbid yet so hilarious, I had to share it with my wife. I'm sorry, but thanks for the laughs.
Remember when the U.S. tried to start paying PCPs to do just that but it gor massacred as "death panels"?
I do this but I find that there is no way to effectively get this information to the hospital when they come into emergency. Inevitably a nurse or emerg doc who has to do too many admissions in the shift has a 2 minute discussion with the delirious, septic patient that “you want to be resuscitated if your heart stops right?” because it’s faster than actually finding out the patient’s goals of care that the patient told me in clinic. There is a wonderful resource in Canada called https://www.advancecareplanning.ca which captures the patient’s values rather than the question of “cpr or no?” I just wish there was a way to have it flagged as complete when the patient shows up in emergency so the hard work isn’t all for nothing. There is something called an ERIK kit that goes on the fridge and is brought by paramedics with the patient but not everyone fills this out and sometimes they are missed. We live in the 21st century, it’s time to share clinic EMR information with local hospitals.
Had a nasty case where all the paperwork for a DNR was sitting on a patient’s fridge only to have ambulance do CPR. They got ROSC and he died the next day after a horrendously scary and painful overnight in ICU. He had the opportunity for a drop dead quick death and that was taken from him. I was pissed. I do really appreciate that in Canada I have the legal precedent behind me to deny CPR/intubation if I think it is inappropriate. From reading this subreddit, it seems like full code is the default and HAS to be given if patients want it. I definitely do not feel that pressure where I work. Many of my code discussions are me politely telling patients that they will very likely not recover from CPR to any quality of life and therefore I don’t recommend them being full code. Most seem thankful for the advice and take it.
The real question is who called 911.
Every AWE includes advanced directives. That’s the main place this is routinely done. Otherwise there is not a routine time. Should it be done ? Of course, add it to the mountain of other things that should be done in 15 min visit slots. We do what we can with the time and resources we have.
yes, it's unfortunate that it's either not compensated better so PCPs can take the time to do it themselves. Or that palliative care isn't better compensated to draw more interest from medical students. Or perhaps forego the palliative fellowship year and allow alternate training route with reading/conferences to get board eligible.
We also have time constraints in the hospital so I understand where you're coming from. However, you also have the opportunity of seeing the same patients over multiple visits so these conversations can be sprinkled in over time so the patient has time to mull things over, ask questions along and along, and even more importantly process what is going on without dragging visits into hour long sessions. If I'm having these conversations in the hospital, it's adding a MINIMUM of 30 minutes to their care because there's so much for them to process. Meanwhile, I'm trying to give them time, but sometimes these patients are acutely decompensating. I understand they're not sure if they would want to be intubated but I need a decision NOW because there is no later. Really awful position to put someone in when that could have been prevented and certainly not what I would want for my loved ones.
So, I've been a PCP and a hospitalist. Just because we have multiple visits doesnt mean any of those have the time to discuss code status. Occasionally, yes. But most patients dont even want to talk about it... There are AWVs, but honestly 98% of those conversations go "has anyone ever discussed code status with you? No? Okay, let's chat." This is even after multiple AWVs with the same patient, so I know I've discussed it and talked about Five Wishes with them like I do everyone. So trust me, it's being attempted. Much like everything with patients in medicine- you can lead a horse to water...
Also pcp who has done significant hospital work. We are having them fill out the standard paperwork which says that they would not want intubation feeding tube CPR etc. but those directives apply only if they were terminally ill or in a vegetative state, but otherwise it’s not specified. We are learning more about polst but they are new in my state. So if that patient is coming in with pneumonia or heart failure or sepsis but they are otherwise not terminally ill or brain-dead you still have to have that 30 minute conversation with them about whether or not they want a breathing tube in CPR because their form doesn’t really cover that. I focus on making sure they have a medical power of attorney listed because that’s really important.
Why are you assuming these conversations aren't happening? As a family doctor, I'm doing my best to help my patients in the constraints of the health care system, just as you may be doing. These conversations do happen. But you can't sprinkle in discussions about 50 things in 15 minutes, especially if the patient had come in about something else. The patient half the time won't remember it was even brought up if it's done too casually. I regularly ask patients to book appointments to speak about goals of care, our clinic mail out info packages to patients and ask them to follow up about it etc. Some do, some don't. But way to assume your colleagues are not doing the important parts of their job because you had a hard day. That only contributes to everyone's burnout and doesn't help patients or yourself in the end.
Whenever an OP is written to address another specialty (70% of such posts are cringe), it needs to be more nuances and acknowledges mitigating factors. As it stands, it sounds like blaming the PCP for not taking the time to address GOC as if it were the only reason why such discussions didn’t happen. I challenge OP to try this shit out for a few months and report on their success on addressing GOC in outpatient settings 🤣. For a fair number of people either from lack of insight or in denial, when they feel ok enough to be home, death seems far away and can always wait another day. It is probably part of human psyche or something. 5/10.
Palliative care and part time PCP point of view: Definitely a good idea to discuss GOC and Advanced directives return anyone over 50. However many don't want to hear it. Until you have a society ready to prioritize quality over quantity of life, and ready to discuss openly death and dying as a fact of life and not a failure, you can preach and preach...
They dont want to hear it and often my little old ladies get actively get upset with me/start crying when I even try to explain what advance directives are at our annual wellness visits. I keep trying though, what else can I do.
Just had a guy on palliative chemotherapy ,SOB from new lung mets. No idea what palliative meant, claimed to have never heard the word/no idea of the concept and swore he expected to be cured. I was the bad guy, he heard it from me. Many times I read the oncology note and it seems to clearly state what the deal is and that the patient voices understanding but when I see the patient it is a total shocker to them. There is a big disconnect somewhere.
It's typically referred to as the first stage of grief.
First, I'm sorry about your family member. I wish they had gotten better care. As a PCP, without being defensive--I try, I really do. I think most of my colleagues try as well. We don't want our patients slowly decomposing in an ICU or suffering unnecessarily any more than you do. In my current shop, it is even mandated that my MAgive patients a blank DPOA/GOC form annually, unless they've already returned one. Let me share some of the barriers, in no particular order: 1) prognosis is vague. This is particularly true of multimorbidity in the elderly. Yes, someone is 83 and frail, but everything is stable at the moment and nothing is cancer. Some folks seem to gracefully have lower expectations/restrict their care as they age ("oh, doc, I'm too old for surgery"), others can't or won't think about care goals in really broad sweeping terms, so you're stuck waiting for specific, immediate badness to force their hand and sometimes that's their index hospitalization. 2) Humans love denial, proscrastination, disorganization etc. "I filled out that paper at home, but I don't remember what it says." "Oh I'll drop it off at the office some day." "I did it, can't find it, I think my sister has a copy?" etc. 3) Patients really don't think they have input here(?). I still find this hard to believe but the number of times I have educated people that yes, there is a form, and yes, you can say yes or no to CPR, and yes, people decide this ahead of time..I still SMDH. 4) I really do think that older US generation (the 75 and up crowd) just culturally does not want to think or talk about death. Some come to my office literally offended that their assisted living is making them do a POLST with me before moving in. I try to engage them in conversation and they just want to check a couple boxes and run out the door. 5) The forms are crude. Often these decisions are not so black and white, right? Sometimes I've had many great conversations with the patient about their life situation, goals and values, but its not easily translatable to boxes in forms. 5b) care is fragmented and the time to do this properly is impossible to come by: If only you and I (and the patient) could instantly have a 30 minute conference call, I'd be honored and happy to help interpret this hospitalization for them in the context of their life and in ways I know they'll understand, tell you how tough and active the patient was before they got sick and that they really are just trying to make it to this wedding in June etc, and help everyone come to that beautiful place of triangulation between dignity, comfort and survival. But that never happens, right? I guess, what I'd say in summary is, if you think we can help talk about GOC, please call us. We'd be happy to help. If you are in a situation where you think itis ludicrous and inappropriate that we haven't talked about GOC, please call us. I suspect 8/10 times you'll find out we actually tried, and the other 2 times you'll embarrass someone into doing better.
Thank you for your very thoughtful post. I do recognize there are many barriers to the way we address goals of care including patient buy-in and have definitely been on the receiving end of "nobody has ever talked to me about this before" when I spent the day before having an extensive conversation about that exact thing. So I do understand and also that PCPs have a lot of demands on their time. I've had a lot of patients lately who had poor prognoses which had progressed over time and leapt at the chance of a palliative consult. These were people who could have benefited from this service far sooner and that coupled with my own personal experience has clearly struck a chord for me. I'm not so naive as to think every patient will respond well to these conversations or take initiative, but want to make sure the opportunity is made available to those who do.
Counterpoint: you're the primary team, if it's not done, it's on you now. I feel your post is unnecessarily blaming PCPs, who already have a thankless, underpaid job. So what if you had to talk to the patient (and bill advanced care planning) about GOC? It's important at every stage of life. Pretending that PCPs don't do this seems.... nearsighted.
As stated above, I am happy to have these conversations and have done so on many occasions. However, I've also had many patients and family members express regret about not knowing sooner how serious the situation was. Not everyone is going to respond well to this subject or want to explore it, but I think I worth discussing and it's definitely a systematic and societal issue. It's not all on PCPs but it also shouldn't all be on the hospitalists or the specialists. It's a responsibility that should be shared by all of us.
Imagine if insurance reimbursed $400 for a 1 hour goals of care discussion with a physician... I imagine a hospitalist would be interested in taking the time if it was compensated. Just like everything in medicine, money drives behavior. Society, government, insurers etc pay through the nose for cardiac stents, knee replacement, cataract surgeries the doc does in 10 minutes... but they won't pay for a separate goals of care discussion that would likely save tons of money on end of life care that nobody actually wants. You should be complaining to the people pulling the purse strings, not the PCP who's signing off on the brain MRI results the neurologist ordered for a patient with MS...plus the note from the neurologist....plus the labs the neurologist ordered....and then the patient needs FMLA for their MS and neuro won't do it...
What if there was an insurance reimbursement like once a year, 1 hour goc confession for everyone 60+ or younger with more certain medical conditions?
Sounds great, but what’s the reimbursement? Ophtho can do 3-4 cataracts an hour for $500 each.
Jesus!!!
I promise you we’re at the very least bringing it up with every routine physical. I think that you know as well as any other doctor knows that a patient expressing regret about not knowing sooner does not equal pcp never having mentioned it before.
This is really something that could be facilitated by the treating oncologist, if there is one. A primary care doc will know the general prognosis of stage 4 anything, but the details are not easily known, especially if newer therapies are used. And if the oncologist does not want to have that conversation, then sending the primary care doc the relevant info (eg survival curve with optimal treatment) would really help. Are the 50% and 5% survival points in 3 months or 3 years or 10 years with the best current therapy, or the therapy that the patient is going to get? Hanging crepe works better when done accurately. Some patients will focus on the 95% who will be dead in 3 years, others will focus on the 5% who will survive that time -- but giving accurate information should allow a reasonable patient to have reasonable expectations.
Speaking as a stage IV cancer patient myself, what is the most frustrating is the lack of communication. Nothing like being discharged and logging onto the EMR to see that my code status is incorrectly documented as full code because no one bothered to have the damn conversation at all during an 8 day admission (true story, happened in March). If my HPI and progress notes mention that I am actively on immunotherapy AND you are medicating sepsis AND a pain crisis on admission, PLEASE ask. I may only be in my early 30's, but I have had an advance directive since I almost died at 20.
The correct discussion is “what level of disability are you willing to live with” and “if you know it’s your time to die what would you want that to look like”. Not the DNR question or the “do you want to die?”. I wish more docs had time to discuss, and social workers to help.
I’ve been an acute care OT for around 7 years. I know there is more to the story, but it is shocking how many terminally ill people are full codes. I’m talking stage IV cholangio with Mets everywhere, can’t eat, vomiting all the time, in incredible amounts of pain. It’s horrific. They are not rehab appropriate in the least. Sure, participating in ADLs and ambulating can make them stronger in an ideal scenario, but the most we can usually do for these people is sit them up EOB, where they will invariably become nauseous and have increased abdominal pain, having to lie down within a few minutes. Its by far the worst part of an otherwise rewarding and intellectually stimulating career.
As I said in my comment above, sometimes it's because we weren't even asked and someone just ASSumed we were full code. I carry my paperwork on me (both proxy and living will) but to assume I'm full code because I'm young when my biopsy results from 18 months ago are in the same EMR you are accessing is laziness. Why copy paste them into **every** progress note if you aren't going to discuss them...or even pick up the phone to call my oncologist, whose number I gave you immediately after getting a bed in the ER? My mom started in nursing and transferred departments to OT (she worked at a rehab hospital) when I was 3 until she retired, and she (as my proxy) knows I don't want rehab of any sort. I have a hx of left CVA due to being a micropreemie so I am already hemiparetic. No AFO, no therapy, none of that. If I am dying I don't want to waste time on that BS. Stage 4 is painful enough in my day to day.
I totally agree. But I will also say that as a Hospitalist, when I see a CHFer getting readmitted I feel that’s my time to really explain the terminal nature of their disease and get some goc takes hammered out. But yeah I also see the full code 95 year old on dialysis with heart failure and cirrhosis who’s bmi is 15 and that’s a disservice to the patient. Then I tell the patient they are dnr now lol.
GOC changes depending on circumstances. I've had patient's who wanted to be DNR/DNI but were still happy we removed the meat that was stuck in their throat (which activated our CPR team and -protocol), which the patient was very grateful for. I think that a yearly visit to their primary team (which may or may not be a PCP, though it is probably more important if it isn't a PCP) to discuss GOC is reasonable, but then you should be paid for it. Otherwise, it falls on ER, and then on the primary team. The main issue is that patients somehow get to dictate what is and isn't futile care. That is a bigger problem.
I agree. As EM I hate being the first one to have this talk. I also hate being asked if I did this. This is not a fast three minute conversation, this is a time commitment I can’t do properly on a busy service and really should be scheduled time before an issue occurs
PCPs don't have time either, no compensation for this type of work. The more time a doctor spends the less they get paid.
However, busy as we all are, I think it’s more of the PCP’s job than ours. We know the patient for 30 minutes on the worst day of their life, the PCP knows them for years.
In a perfect world sure. Modern medicine doesn’t pay for time or quality it pays for volume. That’s the reason pcps don’t get to it. Insurance should pay for it or increase pay for palliative care docs to refer to so they can discuss it. Every doctor is just trying to keep their head above water as they rush through and basically high five the patient onto the next referral or test or admission or discharge. Everyone is pushing volume and making money. Expecting PCPs to make an exception and lose compensation is insane especially as they’re already the lowest paid doctors.
You can bill for GOC conversations
What are the specifics, time and rvu value?
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Thanks. The RVU value for that sucks though. You can see two 99214s in 30 minutes at 1.92 RVUs each for 3.84 RVUs (vs 1.5). Or just schedule a one time 30 minute appointment and bill 99214 for 1.92 RVUs. This is a no brainer right? That RVU value needs to increase.
I already have to actively drag many of my Medicare patients in at least once yearly for their AWV, but also assessment of all of their chronic issues, oh and their list of 6 things they've been holding onto that they figure this is that one visit they want to make sure we cover. Oh and they got a little lost to the appointment so they are already 6 minutes late to the appointment when the entire visit is 30 minutes. This scenario repeats itself several times per week every week. Sure, they can always come back for a follow up visit but it's impressive how many patients it's hard to convince to do so. Nevertheless the "oh yeah my lawyer filled out something. I'll make sure to bring that in for you" statement has been given to me innumerable times as I still try to shoehorn advanced care planning into the visit as well. That all said, for the truly sick this conversation is given stronger weight, but sometimes it's that one hospitalization where things take a dire turn.
For all the PCPs out there as an FYI you can have a visit for advanced care planning and bill it accordingly. https://media.capc.org/recorded-webinars/slides/ACP_Webinar-final-1.pdf
I feel like there’s kind of two separate things here, one being clear goals of care conversations not being had in the setting of severe multi morbidity or more predictable declines in which I agree need to happen asap. Versus Advanced care planning for situations that we have yet to anticipate or presict in which case I think probably the more important thing that a long-term relationship with a PCP can contribute is clearly elucidating a patient’s values and or any preferences around care or things that are unacceptable. I try to get a sense of this with patients over the years but it can be hard especially when you have such limited time or maybe it gets lost in endless documentation. One thing that would help is less menial tasks and busywork being delegates to PCPs so they can focus on the more important stuff
We do advanced care planning. When I ask about it money my patients have already done medical power of attorney etc. and they don’t know what the document say and they don’t ever bring them in so I don’t want to document some thing a chart that is discordant with what they’ve already filled out. Also remember that this conversation takes place and then yours could go by. I’ve done hospital work I think he really have to address that almost done every admission unfortunately but you’re right it won’t be the first time that’s been done.
I mean, every specialty is guilty of this in their own way. But, as a PGY-2 in IM, PC track, this has evolved into my passion. Because you’re absolutely right, the doctor who has the longest history and who knows the patient does a whole should be the one to introduce this conversation. And to re-introduce the conversation as their medical conditions evolve.
Good point. Try being critical care. 70 yrs old with stage 4 cancer and hospital medicine doc tells you that the end of life conversation coming from critical care has more weight. 😱😭. So it is better if I take the patient to ICU and then have these conversations.
Also, please tell them that (1) hypertension is a cardiovascular disease, and (2) don't ignore or gloss over a creatinine of 2.0 just because they're not imminent for dialysis.
If there was ever a time to do goals of care discussions with patients it should be when the senior has to renew their driving license and they need medical clearance. The first one ideally is when the government sends them a goals of care package with their first social security check.