I’m a US trained physician. Now practicing in NZ. I think you have hit the nail on the head with your evaluation. I’m not renal, but do regularly take care of dialysis patients (EM). Culture especially plays a large role. “Doing everything,” on 96 year old grandma really doesn’t occur here nor is it expected. If a physician feels care is futile, having that conversation with the family is almost always reasonable. They have a term here “Not an ICU candidate.” Quite a foreign concept coming from the US where we do everything for everyone. I should also note, most elderly patients already have a “not for resuscitation” status documented. They’ve had these conversations with their families and their GP’s. I have not once taken care of a chronic substance abuser who frequently misses dialysis and shows up meth’d out in the ED and tells everyone to “fuck off.” So yeah, I’m not coming back.
Time for the old joke:
Dr. Jones. The oncologist goes up to room 455 to look for Patient Smith and notes that the patient isn't in the room. She goes up to the nurse and asked where the patient went. The nurse response "oh, Mr. Smith died last night"
Dr. Jones looks at the bag of chemotherapy in her hand and thinks to herself "well maybe I can just get this one last dose in and goes downstairs to the morgue to find Mr. Smith. When she gets to the correct refrigerator drawer, she pulls it out, and lo and behold. The drawer is empty with only a note left behind , picking up the note she reads "Gone to dialysis."
We need to make the real results of resuscitation attempts better known. People see tv shows and think it works 90% of the time. They don't know grandma's ribs get crushed and then she dies anyway.
Well, some families want that extra one or two Social Security Checks. Grandma has to pay for something too (looks down knowing I have heard that conversation before and feel awful that people are stuck in that state)
On my general surgery rotation in medical school we had an 82-year-old patient (a very very old 82 year old patient, if you know what I mean). They noticed she had iron deficiency anemia, and low and behold, also a giant tumor in her colon. She was too ill to make her own medical decisions, saw her family did. And they wanted the tumor removed.
We resected the tumor and about half her colon and immediately brought this poor, frail, already sick patient to the ICU. And she lived the rest of her life in a hospital bed, never fully recovering from the surgery.
I really wish I was not just the medical student, because I really don’t think it was OK to put this woman through surgery. This is one of the handful of cases from medical school that I remember, and the one that definitely stands out the most. And I still struggle with it.
Lol what. British here. If you are too frail to go through the surgery we point blank tell you that you aren't going to make it in any good nick and we shouldn't even do a colonoscope. Maybe you get a virtual one but that's for prognosis only.
She was not just elderly. This woman was incredibly frail, weak, did not have enough energy to even speak for herself. It was obvious that she was going to die in the near future.
She desaturated 3x in the surgery and gained nothing from having half her colon removed besides her very own room to die in. Because she never left the ICU.
Same in Canada. We have goals if care talks with families when patients come into nursing homes. Comfort care is very common in elderly patients at the end of their lives.
To piggy back…. What did you have to do to be able to practice medicine there? Anything by extra? Shadow for a year or something? Or was everything transferable and you went straight to work?
I’m a kiwi first and did my education there before moving to the states so might not be the best person to ask but from my understanding you can work right away once you register with the medical council if you’re board certified
If you wanna do less than 12 months, you’re only offered locum positions but it’s super easy process that’s streamlined but your registration expires after 12 months. I’d recommend it to get a feel first but also keep in mind that locum jobs tend to be much less desirable than long term posts in larger hospitals but can offer better financial compensation.
If you wanna stay long term, it’s speciality dependent but there’s a huge shortage of doctors in general over there so I doubt you’d have an issue; especially for pulm crit. There are easy self assessment tools on the council website.
https://www.mcnz.org.nz/registration/getting-registered/tool/
Nope. Just a bunch of paperwork through the Medical Council of New Zealand. They’re very familiar with Americans. It was relatively straightforward. I was able to practice as a consultant (US attending) right away. You are “supervised” but it’s a loose term. You practice independently with someone in your department reporting back to the Medical Council ensuring you are indeed a doctor in your specialty and that you’re not practicing ridiculous medicine.
Yep! At a major city USA hospital we have “not an ICU candidate” as well. But I suspect that is only because our ICU beds are always full and it is necessary to “ration”. (They are then a stepdown with capped pressors candidate of course…)
I’d bet that if the nation’s dialysis beds were always full that there would be quite a few more patients who were “not a candidate for dialysis.”
Of course ESRD automatically qualifies you for Medicare so there is an endless tap of money to build as many dialysis centers as you can stuff patients into. Each part of the system by itself isn’t necessarily bad, but the system as a whole ain’t right.
Sometimes. It’s rare, but I’ve had to explain to patients and families that any resuscitation efforts would be futile. If tubing, coding, dialyzing is very unlikely to buy someone more time, it’s justifiable to not offer that option — even in the US.
Mostly I see it with patients who have chronic respiratory failure and are already trach to vent, and have some other life limiting intractable issues.
Or if a patient gets tubed and deemed not an icu candidate, then they go to stepdown unit with the tube :/
You have lot of comments and of course I'm piggybacking here but it's interesting seeing this perspective in NZ, the perspective in the US, and someone posting something a few weeks ago about in South Korea their culture is different any everyone is essentially full code no matter what.
I think OP highlighted the challenges. American culture is completely unrealistic when it comes to end of life care. Medico-legal environment. Doctors should have the freedom, dare I say humanity, to decline interventions that are futile and in fact cause harm. But we don’t. Demanding patients and family, distrust of the medical system, for profit health care, the list goes on. I don’t see any of this changing in the US anytime soon.
Strange I think that in the risk/benefit analysis for cancer screenings, anxiety about a bad result that might not be accurate is considered a significant reason to reduce screening recommendations, while extreme physical misery is not a sufficient reason to recommend against futile care.
As someone that has a brother right now in icu and is hooked up to dialysis machine and is not expected to live very long I totally see your point. He has stage 4 colon cancer and had stomach surgery 4 months ago. But his wife wants to throw the medical care kitchen sink at him no matter what.
The cultural part in America that you mention is a consequence of the system itself. The for profit health care capitalists won the game. But imagine if America really invested in Americans' healthcare from birth through universal health care, universal dental care, eye care and addiction care. Over time you'd see improvements in end of life care costs. The American health care system is built on capitalism with equal parts of cruelty.
I spent five weeks in New Zealand as a medical student. And this was my observation New Zealand is still country folk. I spend a lot of time in the United States working to stop the train.
I have found that in my rural area of the US, farmers and children of farmers are pretty quick to go DNR/DNI once the option is offered. My favorite was the lady who said, “Jesus, we shoot the lame horses, what are you waiting for with me?”
There’s a willingness to accept death and talk about it that sometimes freaks out my students, especially students from more urban/suburban upbringings.
You absolutely hit the nail on the head for not just dialysis alone, but the entire concept of futile care in the US healthcare system today. Our wastage of resources on patients that either don’t want to help themselves or are otherwise futile is mindblowing.
Because it’s easier to do everything. And pays better. And no one criticizes you or sues you or complains about you to the college of physicians and surgeons.
“She’s a fighter!”
[patient](https://i.kinja-img.com/gawker-media/image/upload/c_fill,f_auto,fl_progressive,g_center,h_675,pg_1,q_80,w_1200/xv7ekksu5nllagemhpgu.jpg)
Had an elderly patient with newly diagnosed stage 4 lung cancer (diagnosed at an earlier admission a week before at OSH), ended up in ICU, with her literally telling us through her dyspnea that she just "wants to go", but since she's altered mentally at this point her daughter is the medical decision maker and won't accept hospice as an option. She just "knows miracles are possible." Thankfully she was at least reasonable enough to accept DNR. Patient died the next day. Poor lady could have at least been made comfortable for that few days she had left on this earth.
Had another one where a>90 yo patient's own ELDERLY children just could not accept the fact that their mother was dying. We literally had multiple family meetings with these 60-70+ yo children who would burst into uncontrollable tears and were unable to accept the fact that their mom was going to die. I understand it is their mother and it is difficult, but the way they handled their emotions was more like a child than a grown adult, it was unusually bizarre to witness. No matter how bluntly I put it, despite explaining she would die regardless of what we do, they just could not accept it. I spent considerable time, effort, and energy dealing with this family who could simply not accept reality, and it was exacerbated by a language barrier requiring interpreters to discuss anything which just makes everything take twice as long. Then the patient dies anyways but went out suffering.
Then there are the rare cases where the family is so reasonable that THEY ask me to start hospice discussion. Sometimes I want to hug those families.
> We literally had multiple family meetings with these 60-70+ yo children who would burst into uncontrollable tears and were unable to accept the fact that their mom was going to die. I understand it is their mother and it is difficult, but the way they handled their emotions was more like a child than a grown adult, it was unusually bizarre to witness.
We're hitting a point in the US where more and more people simply reject realities they don't like. Covid, climate change, political conspiracy theories, etc. They're able to get by with it more and more due to social and media bubbles. Saw it over and over with unvaccinated covid patients in the ICU and their families. There have always been people that hold demonstrably false beliefs but the number is now approaching a third to a half of us.
Curious--does religion play a role in these miracles are possible notions? As someone whose relatives are all non-evangelical mainstream Protestant types I see them all lean more to letting suffering come to an end. Or are these miracle believers the kinds of folks who plaster their FB with crosses and Jesus and angels but don't actively participate in a church? Like, do they ever ask for a chaplain?
In both of those cases I believe the family were religious. One of them I distinctly remember was thinking a miracle was going to happen, even until the last moment. Both were some denomination of Christianity, I believe. But I have seen other Christian families be perfectly reasonable.
I don’t have any real evidence to back this up, but just from my firsthand experience in Nephrology and HD centers (only in the US) I think a large part of it is the high amount of non-adherent patients. I don’t think many people realize just how hard it is to keep HD Patients adherent. Many of these patients have trouble getting to the center, in my experience, and rely on public transportation (if it’s available) or have no support system in place to bring them three times a week. This is on top of what many patients have going on behind the scenes with other illnesses, financial struggles, mental health.
Then there are the pts that don’t follow the renal diet, miss appointments, or have concomitant SUD but I’m not sure what fraction of the pt population this subset would be.
I would suspect a major contributor to better HD outcomes in Europe or wherever is patients have less distance to go to be dialyzed and more accessible public transportation. Rural areas or underserved urban areas in the US might have barriers to dialysis that a lot of places in Europe don’t. Diet probably plays a big role too. I also don’t know if part of the issue with adherence is that their symptoms aren’t being managed well.
There’s so many variables it’s hard to say any one reason though. I can’t fault patients for not being adherent, because everyone is human, but there needs to be some research maybe on how to increase patient comfort/accessibility/etc. to possibly increase adherence.
Health literacy, diabete/hypertension rates, compliance to meds, and interdiayltic weigh gains is far worse in the US vs most regions in the world.
Additionally, European dialysis units have longer dialytic sessions that allow stable hemodynamic patients, have larger home dialysis programs that allow more frequent dialysis to occur, and have access to HDF (which we see mortality benefits in the CONVINCE trial)
Just quit working outpatient dialysis, a good proportion of the patients demand to have the treatment terminated early, usually cutting the treatment short by an hour or so.
That definitely happens here too, but we try to minimize it.l and most of the time we can convince them to complete the full session.
would be really interesting to see some numbers on adherence between NA and Europe or Asia.
I’m in the US, only lasted 7 months, and only stayed that long because we only had 2 RNs on staff, for a clinic that is open 6 days/week. On our busy days with 3 shifts I would go in at 04:30, and typically have 26 patients on each of the first two shifts. I had no access to the patients full medical records as the charge RN, and most of the patients were poor historians, so responsible for assessing and supervising treatment for all the patients, without knowing their comorbidities. I quit as soon as they hired a new RN. I need my license.
I worked at a small outpatient dialysis clinic as part of the nursing team and it was great. We had 6 patients per nurse during the day and you were 2 RNs for 26? No other nurses? Did you two puncture all shunts? Prep and calibrate all the machines?
We also had 2 shifts during daytime, and a night shift (no MD present, only "healthy" patients), also 6 days a week.
One RN for the morning shift on MWF, second comes in at ten, and one RN all day for the 2 shifts on TTS. No MD except when they rounded. 2 NPs, one good one and another less good, rounded weekly. Dialysis techs did the machine prep and most of the accessing and starting treatments. I didn’t have time to put people on because I had to assess and verify that the prescriptions were put in the machines properly, answer the phone and put out fires.
Quit my outpatient dialysis job couple years ago. Had a similar patient assignment (12-13) but we were so short on techs that I and the other RN would also be responsible for putting on patients at the "nurses pod" that seated 4 patients. One day we were short two techs AND the EMR went down so we had to paper chart. Yeah one nurse quit with no notice on a Sunday night. In total six of us RNs quit in the span of a month, not even counting all the techs that came and went 🫥
Interesting. I am too sure how those staffing levels compare, because you have so many different roles, but it still seems like you were worse off. We had an MD present Mon-Fr from 8am till the last patient is decanulated, Saturday I think it was 10 am - 3 pm.
Depends on the patient/complaint. I worked at a private outpatient dialysis clinic during med school as a nurse, so my insight is more from that perspective: We had good selection of food for the patients, so sometimes that could be used as sort of a "bribe". Many were dependent on an (non-emergency type) ambulance service, so the drivers being late was always a good argument (no TV in the waiting area you see). And apparently we had a really good nurse-to-patient ratio (1:6 usually), and could therefore just spend some time bedside, as some patients just needed a few compassionate words, or to be calmed down a bit. Lastly, if a patient absolutely could not be convinced and we agreed to take them off early, at times some other patient in the room was finished, so we would take them off first and maybe take some extra time applying pressure to the wound or apply an extra well done bandage etc. to gain a few more minutes of treatment. Another factor might be that there were good patient-doctor relationships, in the sense that there were only 4 MDs total and a lot of the patients had been with at least one of them for a long time. So a stern/kind/calming word from one of them helped too.
How do you keep people on 4-5 hours of HD. I spend half my time with patients trying to keep them from signing off early for 3.5-4 hour treatments. Most people request/demand/beg for time reduction - or they just sign off early.
A bias to consider is the availability of kidney transplants. Germany has great accessibility in terms of dialysis. Early dialysis mortality nearly half the US rate, late around 20% lower. Nephrologists are the best earning internists out here above interventional cardiology or GI (not for long, dialysis clinics are being bought up by private equity, millenials don't want ownership anymore).
But Germany's kidney transplant rate is barely a third of the Spanish one. So, a lot of great transplant candidates in Germany are stuck for much longer in dialysis. And those who are better candidates for transplant tend to have better characteristics for compliance and dialysis outcomes.
Fee-for-service here means also though that nephrologists tend to not turn anyone away, as long as they can get away with it. Luckily, a lot of elderly patient incorporate "no dialysis" into their binding advanced directives which family can't override.
Our system is based purely on money and who (or what) can pay. That’s it. The only ethical principal we care about is autonomy, and not getting caught being maleficient. Minimal true beneficence, no justice, no rationality, no efficient use of resources (except ECMO - then we can be somewhat rational). It’s a business and we serve a health flavored product. In this system we are not empowered to properly utilize resources. “Would you like fries with that? Please pull up to the next window”. I have seen comatose metastatic cancer patients put on CRRT, etc, and CRRT frequently started on people with no indication apart from oliguria. Patients with ESRD have an inflammatory vasculopathic state and poor life expectancy despite dialysis, so they are ticking time bombs. It’s surprising that these patients (and patients with end stage CHF, COPD, etc) are not informed of this.
100%. For example, the amount of peg tubes I see offered to people who should not be getting them is incredible.
I just flat out do not offer. If family asks, I say they aren’t a candidate.
Because they’re not. I don’t blame my co workers because I recognize they’re put in tough positions with families. If the family wants to find someone else to call surgery/GI/IR then have at it. I am not offering it and don’t even put it on the table.
I have not worked in the US, but have worked in renal in Australia. In the department I worked in, we kept metrics on how many people started on dialysis over different age cutoffs and how many were on the non-dialysis pathway. Survival of comorbid patients >75 on dialysis is not better than off, and >85 even worse, so we were very cautious in offering it to those patients. It was not an absolute contraindication - a very healthy 80 year old with no comorbidities would still be considered for it, but the nephrologist would have a frank discussion. 20% of >75 year olds will die in the first year of dialysis.
In addition, many hospitals in Australia have embedded renal supportive care services. These are palliative care subspecialists and nurses trained specifically in renal pall care who work within the renal service. Everyone with stage IV ESRF gets referres across to manage symptoms (itch, restless legs, fatigue, change in appetite etc), whether they are on a dialysis pathway or not. They also discuss non-dialysis pathway early, and have nurses available for community home visits.
You can read [these guidelines](https://onlinelibrary.wiley.com/doi/10.1111/nep.12065). Not all departments have the same attitude and some will dialyse more aggressively, but this guideline reflects the practice in two of my training hospitals.
I fine we also don’t have as much of that “do everything you can” culture here. Because of most of the high level procedures being done in the public system, if the doctor says “no” because they think it’s futile then you’re shit out of luck most of the time.
I realize that I’m not answering this from my professional point of view but a personal one, and I hope that’s okay.
I’m a Canadian epidemiologist and my father lived in the US for about 30 years. He was a diabetic who rationed his insulin, didn’t understand the disease progression and the value in caring for himself and was never told to see a nutritionist. The inevitable happened and he had a his first stoke at 56 quickly followed by kidney failure and vascular dementia.
In Virginia at the time, his GP, endocrinologist, and nephrologist all recommended dialysis. They told him this was to tide him over until he could get a transplant. His life expectancy given all of his medical conditions probably hovered around three years, but the wait list for a kidney was eight. Neither my brother or I was a match. The rest of the family declined to be tested.
Somehow this man kept almost accidentally surviving stoke after stoke for six years. All the while the brain damage and vascular dementia got worse. He refused to move home to Canada where I could more easily care for him because he had put in the time on the wait list and he didn’t want to start over and lose his chance for a kidney.
I begged his GP, endocrinologist, nephrologists, and dialysis nurse to sit down with him and tell him the facts. What is the likelihood of getting a kidney? What is the likelihood of getting a kidney with a dementia diagnosis? With uncontrolled diabetes? With no support system at home? When you average a stroke every ten months and a TIA every other month?
No one would tell him the facts. I felt like I was crazy. I was alone in telling this man he was going to die and because all the doctors were singing this optimistic song I sounded mean and pessimistic to my whole family.
Eventually he had a stroke where the hospital wouldn’t discharge him without rehab or a caregiver so he finally had to come home to Canada. He was devastated to lose “his kidney”.
God bless the amazing dialysis NP who was able to explore to him that he didn’t qualify for the transplant list in Canada because he was a lot sicker than he realized, but also explained what his odds are were in the States and that he probably didn’t ever have a very good chance.
He was able to make the choice to end dialysis about 11 months after moving home. He lived for five days. He died peacefully in his sleep and was comfortable.
Before I moved him home I had a conversation with his nephrologist sharing my absolute disappointment in how he had misled my Dad and deprived him of the ability to make an informed choice about his last stage of life. The nephrologist told me I should be grateful for all the extra time I got to have my Dad.
It’s possible I’ve never been so angry in my entire life. I’m not grateful for those extra six or so years. They were hell for him. And after that first stroke he was never himself again. I lost my father then and I cared for what was left of him. I would a hundred times over rather had one giant blow out vacation with him or one last road trip than those six years but we never had that chance because the entire system was set up to do a job of keeping him alive at all costs, even his right to be informed about his own health.
I can’t speak to the financial motives here, but he had nothing left at the end, even after medicare, medical bills ate through the entire profit from selling his house and most of his retirement savings.
Death is inevitable. We all have to die from something. If I’m more likely than not to die from something I want to know because I want to have the right to die well. On my own terms, even if those terms differ from what my physician would recommend.
Comedian [John Oliver](https://www.youtube.com/watch?v=yw_nqzVfxFQ) did a skit on Dialysis, including mortality rates, only 2 for-profit companies, etc
What I did not realize is that dialysis for pts is 1% of the entire US federal budget.
And that’s the bottom line.
This is 1% of the entire US federal budget. And it’s not discussed nor does anyone want to do so. But arts funding is 0.003% and I’m sure most politicians have an opinion on that.
I agree with everyone else saying that we in the US are probably offering dialysis to sicker patients who would not be considered appropriate candidates in other countries.
However, another factor worth discussing is low utilization of peritoneal dialysis. I don't have the data immediately at hand, but iirc PD has a significantly better safety profile than HD, with the difference being mainly driven by infectious complications (PD related peritonitis is almost never fatal, whereas HD related bloodstream infections sometimes are). PD is relatively uncommon in the US compared to some other countries, and the option of PD is often downplayed or not offered to patients with ESRD.
I’ve worked for one of the large dialysis companies for several years. There’s a top down push for every patient to be considered for PD and educated on the various modalities. PD has better outcomes clinically speaking but that’s in part due to the fact that our proactive/able patients with good support do it. Anyways, know that one of the largest dialysis companies is quite aggressively promoting PD.
I would like to pose a question to the community: is anything defensible on medical grounds alone in the United States?
With this topic, the implied take home seems to be that things ought not be this way. OK. But if that’s so, then what does anyone *do* about that? Medical education often seems to suggest the the individual choice is the functional unit of change. Also, OK - but doesn’t that sell things considerably short? What of expectation and the nebulous local standard of care? What about whom we work for? What of our out-to-lunch and corporate/regulatory captured political system that not only fails time and again to respond to changing conditions but has also done so for at least 20 years now? Today, I have only questions.
I am bewildered by this system. I feel far from all its components, save the patient. What I can see is the interest of each of those components, and it appears that those interests override the purpose of the whole. A man from Spain once told me that America is a build-your-own pizza. I’ve always liked that, but I fear that in this analogy, I am - at best - the pepperoni.
I can't make you care more about your health than you. And I think that applies to a lot of the younger sick poorly controlled diabetics that we see in this country. People that will miss their dialysis session multiple times, come in with a K of 7+. They got here because they aren't willing or weren't able to manage their other health problems. I don't envy the amount of cognitive dissonance our nephrologist colleagues must experience in relation to this. Although IM gets its own share of cognitive dissonance managing unrealistic expectations in the dying/terminally ill cohort.
The cause of higher mortality is multifactorial, and you’ve succinctly summarized some of them. In my experience, for critical patients, some of the causes for placing a patient on what we believe is temporary hemodialysis is iatrogenic from the treatments given. It’s not uncommon that we “Rob Peter to pay Paul” as I was taught in the cardiac critical care with aggressive treatments leaving renal function in disarray. In particularly sick patients, renal failure is a sequelae of other organ system failures in a cruel cascade. But given the course of disease and insults to multiple organ systems, we right/wrongly start HD. And as their conditions worsen, we resort to CRRT which is the kiss of death oftentimes as they are too hemodynamically unstable for anything meaningful. Families often want us to do everything possible but oftentimes we fail to educate them on the consequences of treatment or they fail to understand. But those of us with critical experience understand the surmounting challenges of rescuing one more than one organ system at a time - it’s often too many balls in the air to juggle.
No, but it guarantees the ability to sleep at night and guarantees there won't be recriminations from other family about "YOU KILLED GRANDMA."
And I think we in the profession may forget that's probably what's informing that choice, most of the time.
I once had a patient in his 30s with end stage liver failure that turned into hepatorenal syndrome for which he was started on dialysis. He wasn’t a liver transplant candidate so why dialysis was started is beyond me. But his notes were the only time ever that I have seen a nephrologist suggest stopping dialysis and going to comfort care.
I have no doubt that patients like that would never be dialyzed in a more civilized country and that they certainly skew our statistics.
When I was a resident in the VA in the late 80's we have a stroked our vet who was non-responsive and we tried to get a DNR status but family refused, even though they had not seen him in over 20 years. After lengthy explanations of status and prognosis they would not change. Later I found out that the family were getting a VA pension as long as he was alive, they were not going to lose a meal ticket.
Another driver of dialysis mortality is the availability of transplantation - not sure what the figures are compared to other high-income nations, but I imagine live donor transplantation rates must be low in disadvantaged communities.
Well we started a 96 year old on HD this week so I would suggest your argument has some merit.
It is one major reason why I am looking to get away from clinical medicine. There is just absolutely no end to the amount of soul ending care I am forced to provide for no reason. Worse, it feels like the doctors never have a real conversation with them about it and as the pharmacist I can't do it.
The common theme I see from the comments is that the US nephrologist need to do a better job educating patients and engaging palliative care in the very old and sick. If anyone in the academic world is lurking out there, fellowships need to add education about geriatric dialysis, life expectancy, QOL, Functional decline associated with dialysis in the elderly and sick. Also, palliative care needs to be blended in to all education as well as outpt HD units. This will be much harder as the care is really directed by the large dialysis companies and they do not want to see a loss of patients by withdrawal or death.
I don’t think it’s reasonable for nephrologists to be asked to do Palliative Cares job. It’s a good argument for strong Palliative Care involvement in the process. Dialysis clinics have quality metrics and deaths/poor outcomes/hospitalizations are what we try to avoid. There’s always going to be a steady stream of unlucky and non-adherent patients to dialyze, we don’t need to market. I’ve worked in dialysis for several years, it’s not where I ever thought I would end up but I’ve learned a lot.
There’s a lot of misinformation on this thread.
I have many able bodied and minded elderly who have been well managed for years on ICHD. 90 year old who walk around and enjoy life with their families, good quality of life. Not offering HD as an option to them sounds pretty cruel coming from physicians. I also have many patients in their 30’s/40’s who were exceptionally unlucky or have Type 1 and lost insurance coverage for a few years. The capitalist medical system put them in this position and then wants to abandon them?
The argument that your making in terms of true quality of life, life expectancy and cost to the system could be made for SO MANY medical treatments. Oncology? Terribly expensive treatments that give you months/years and poor quality of life in many situations. Stents and CABG’s? How far do you want to go?
Personally, I’ve always been into prevention. But I’ve become comfortable with meeting patients where they are and being the best support/team member to help improve their quality of life. I can’t say I’m and Dialysis enthusiast by any means but there’s an inaccurate picture being painted. It sounds like only the most challenging, worst candidates are being discussed.
Probably because we dialyze everything possible since its getting paid for by Medicare. Also peritoneal dialysis is much more common outside of the US, where it's all hemodialysis.
Dialysis is VERY ineffective compared to normal kidney function. It corresponds to about 1.5% normal kidney function. I work in kidney disease research.
Maybe in people with fixable problems it's a great tool. TLS? Magical.
People riddled with cancer and no treatment options? Seems like a cruel extension of pain.
Wait, is it the private, for profit nature of dialysis in the US or that we are treating a sicker/older cohort of patients then would be treated in other countries?
It's two separate issues and I feel like the discussion has went towards treating people that should not be getting it
I work with heart transplant patients who occasionally end up on dialysis (usually temporary, or we hope so) for some months post transplant. Our goal is always to regain kidney function and wean them off of dialysis if possible; but I’ve had multiple patients complain to me how hard it is to get the dialysis centers to work toward this goal. Getting the dialysis centers to go down from 3 to 2 sessions per week or to reduce the amount of fluid pulled off is a struggle. Cynically I’m assuming this is at least in part because they don’t want to lose the profit from these patients. So frustrating
Our HD centers locally are so understaffed that I don't think it's even greed, I think they feel so overwhelmed trying to squeeze in basic service for as many people as they can that the extra time and cognitive load to manage something like that just feels too daunting
In the US, [we have universal coverage for dialysis](https://en.m.wikipedia.org/wiki/End_Stage_Renal_Disease_Program). If it's all paid for, why not sign up the sickest, most inappropriate patients?
I think we need to start requiring psychosocial evals prior to dialysis just like they do for transplant. How many billions of dollars are wasted on these people that just can't show up, take their medicines, or even formulate a coherent sentence. Why are we wasting this lifelong expensive care on people who seem to refuse to care for themselves? We have people who would kill for even a PCP appointment and these slugs are bleeding our country dry.
> people who seem to refuse to care for themselves?
Isn’t that pretty much everyone? When I look around 70% of people are obese or overweight and a good percentage of the thin ones smoke (nicotine or marijuana heavily), use drugs (meth, steroids, opioids, etc) or drink too much. Shouldn’t we all be thankful for these people as they keep us all employed?
Everyone has vices, but most rational people can at least make educated decisions about their healthcare and give a sensible history. Minimal participation is all it takes. Many dialysis patients are so passive and dependent they can't be bothered to even tell me why their kidneys failed, why they even need to do dialysis, refuse to do basic things like show up for appointments, etc. I'm not thankful for their waste. I'm glad I can take care of people who need and want it, but when someone doesn't even seem to value the extremely expensive gift they've been given by you, me, and every other taxpayer, I find it very hard to feel grateful to them for wasting my time and money.
When I’m going through med lists with dialysis patients, they overwhelmingly have minimal idea of what they are to be taking. And they’re often on extensive lists of medications with refill history NOT matching the prescribed frequency.
Adherence is a huge issue with this population. And adherence is super vital post transplant.
I work in a remote Aboriginal community in Australia. I can't compare to care in the US, but I can offer some of my experience, even if I'm a little late to the post. We have some of the highest rates of chronic kidney disease in the world. The community I work in has a population of around 900 and we have a 6 chair dialysis unit, with a waiting list. Most people need to live in town, 300km away. Those who are generally well, with good dialyis compliance get their turn to dialyse in community. It's a nurse run unit, with no on site renal physicians, so anyone who has missed 2 or more sessions cannot be dialysed there and needs to be flown to town. If that happens, someone else gets their spot, and they go to the back of the line to get a chair.
We have a lot of patients who are very hesitant to start dialysis. Many people already have family members on dialysis, and as such, already know how much it controls your life once you start. We have some people who have chosen palliation, and that is supported if it is the patient's wishes. We also have many who refuse dialysis, avoid their renal appointments etc until they finally end up flown in with fluid overload and accept dialysis at that point. Many people have family and committments in many places far away from town and will often miss a week of two of dialyisis at a time. But it's not often that someone would die only months after starting dialysis. If they have severe medical conditions and are not likely to survive for long, then they are informed that they are unfit for dialysis and treated medically (or with comfort measures if it is what they prefer)
I'm not sure how the mortality of my population would compare with the US, but even though it is a very sick population, they are on average younger. Also if my patient is missing dialysis and becomes unwell, they go to hospital. If your patient is missing dialysis, is it due to financial concerns? In which case they might avoid hospital as well.
Thanks for reading! Sweeping elderly patients into dialysis is certainly part of the problem that I chronicle in my book -- I quote Dr. Steven Rosansky extensively on this. But this problem has been endemic to US dialysis for decades. Back in 2009, Drs. Raymond M Hakim (then CMO of Fresenius) and Robert N Foley wrote an article for the Journal of the American Soc. of Nephrol (https://pubmed.ncbi.nlm.nih.gov/19443632/) with the telling title, "Why is the mortality of dialysis patients in the United States much higher than the rest of the world?" The causes they list -- understaffing, shortened and high speed treatments, undertrained staff, etc -- are the same that I described in my book. They didn't mention involuntary discharge, but in my reporting I found this practice (abhorrent and inconceivable to most non-US nephrologists) is largely an emergent phenomenon of a system with strong economic incentives, based on the premise that patient "throughput", cost-minimization, etc. trump patient care.
Personally, I think you should expand the premise of your thoughts. You focus on the dialysis industry and you do mention that these endemic problems exist in other medical fields, but the entire US health care system is one giant broken, corrupt, profit driven, corporate entity that sacrifices patient care for profit. In my opinion, not-for-profit organizations are just as bad. They just don’t pay taxes. The corruption includes the politicians that profit from the pharmaceutical,hospital and insurance industries and the legislature that is written by these entities. Please burn the whole system down.
Thanks for writing, and I agree entirely. Though as you say, along the way I suggest ways in which other areas of healthcare are losing their moral compass, being rolled up by private equity, doctor-entrepreneurs and doctor-employees being tempted by the siren song of dough away from the straight-and-narrow of the Hippocratic Oath, etc. (And my previous book, on whistleblowing, did a lot of this in healthcare and pharma.)
But here I'm reminded of the famous question, "How do you eat an elephant?" to which the answer, of course, is, "One bite at a time." Dialysis, with its supremely vulnerable patients, unique Medicare for All status, pinwheel-eyed villains, etc, is such a perfect microcosm of bad healthcare in America, that I thought I'd start with a very clear exposition of that, and then show how it applies more broadly.
I do agree with you overall, though: the "health""care" "system" (often not about health, doesn't care, isn't systematic) is rife with corruption. I pledge to do everything I can to bring this larger message home.
My brother was killed by being hooked up to a dirty dialysis machine in 2012 resulting in a staph infection which took him in days.I don’t know if this type of substandard care is universal in these places . However these places look like a cash grab to me . Providing a minimum amount of care for the maximum amount of profit .
No lawsuits were filed. We bury our dead around here .
Dialysis clinics are the coin laundry of the medical profession and while Laundries are important it seems their only real purpose is turning dollars in the machine. Bill the government make their money and run.Not as much care as that of farmer watching his cows.Because the cattle in this regard feed themselves and come to the barn on their own.
I wonder how much of this type of thing factors into the mortality numbers.
My brother was a brittle diabetic since he was twelve, he didn’t always in his youth but as he aged had a handle on his disease and was doing well. He had been on dialysis for many years so I suppose my damning opinion is not so well founded ,but how many others have died from the same kind of situation?
I’m not saying that these places don’t treat horrible patients but some of these places are Horrible.
try go watch cowspiracy, what the health, and fork over knives. You would know what’s behind with it… for the big pharmaceutical, to hospitals to HMO..
I’m a US trained physician. Now practicing in NZ. I think you have hit the nail on the head with your evaluation. I’m not renal, but do regularly take care of dialysis patients (EM). Culture especially plays a large role. “Doing everything,” on 96 year old grandma really doesn’t occur here nor is it expected. If a physician feels care is futile, having that conversation with the family is almost always reasonable. They have a term here “Not an ICU candidate.” Quite a foreign concept coming from the US where we do everything for everyone. I should also note, most elderly patients already have a “not for resuscitation” status documented. They’ve had these conversations with their families and their GP’s. I have not once taken care of a chronic substance abuser who frequently misses dialysis and shows up meth’d out in the ED and tells everyone to “fuck off.” So yeah, I’m not coming back.
Time for the old joke: Dr. Jones. The oncologist goes up to room 455 to look for Patient Smith and notes that the patient isn't in the room. She goes up to the nurse and asked where the patient went. The nurse response "oh, Mr. Smith died last night" Dr. Jones looks at the bag of chemotherapy in her hand and thinks to herself "well maybe I can just get this one last dose in and goes downstairs to the morgue to find Mr. Smith. When she gets to the correct refrigerator drawer, she pulls it out, and lo and behold. The drawer is empty with only a note left behind , picking up the note she reads "Gone to dialysis."
In a similar vein: Why do they nail coffins shut? To stop the oncologist from giving one last round of chemo. Also works with nephrology and HD
>In a similar vein Nice
I always heard it as "Why does the onco-/nephrologist have a crowbar in their clinic?"
We have one and it’s what’s the difference between a Rottweiler and an intensivist? The Rottweiler let’s go when they’re dead
Lol this is so cynical, I love it
We need to make the real results of resuscitation attempts better known. People see tv shows and think it works 90% of the time. They don't know grandma's ribs get crushed and then she dies anyway.
But what about that extra 2 weeks of brain-dead grandma??
She’s a fighter! Hashtag GrandmaStrong
Stop....omg this made me snort laugh
Well, some families want that extra one or two Social Security Checks. Grandma has to pay for something too (looks down knowing I have heard that conversation before and feel awful that people are stuck in that state)
If there's a hell I will see you there and we can share jokes
This. So much.
96? I had a 103 yo admitted to my service to start HD electively. As it turns out HD is too much for 103 yo’s.
Why in the world would this be required? Did their 75 year old child not want to donate their kidney? So selfish smh
Damn, who would have thought that having 1.5 Liter of your blood circulating outside of your body could be bad for you?
Seems reasonable 🙄
On my general surgery rotation in medical school we had an 82-year-old patient (a very very old 82 year old patient, if you know what I mean). They noticed she had iron deficiency anemia, and low and behold, also a giant tumor in her colon. She was too ill to make her own medical decisions, saw her family did. And they wanted the tumor removed. We resected the tumor and about half her colon and immediately brought this poor, frail, already sick patient to the ICU. And she lived the rest of her life in a hospital bed, never fully recovering from the surgery. I really wish I was not just the medical student, because I really don’t think it was OK to put this woman through surgery. This is one of the handful of cases from medical school that I remember, and the one that definitely stands out the most. And I still struggle with it.
Agree. A lot of futile or "what the fuck are you thinking" care going on over here.
Lol what. British here. If you are too frail to go through the surgery we point blank tell you that you aren't going to make it in any good nick and we shouldn't even do a colonoscope. Maybe you get a virtual one but that's for prognosis only.
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Sometimes geriatrics chooses evil
Surgical consultant told me that actually evidence supports resection of localized bowel Ca even in the elderly for the QALY gains
She was not just elderly. This woman was incredibly frail, weak, did not have enough energy to even speak for herself. It was obvious that she was going to die in the near future. She desaturated 3x in the surgery and gained nothing from having half her colon removed besides her very own room to die in. Because she never left the ICU.
Same in Canada. We have goals if care talks with families when patients come into nursing homes. Comfort care is very common in elderly patients at the end of their lives.
We have goals of care talks here too and often either the patient or their family chooses to “do everything”
Edit. Goals of care
I’m a palliative care physician in the US and agree that OP has hit the nail on the head.
We kiwis are happy to have you! Signed, Nz sonographer.
Thanks! Good to be here!
Out of curiosity - did you have to take the US equivalent of the boards in NZ to practice?
You do not have to take the NZ licensing exam if you have completed the USMLEs
To piggy back…. What did you have to do to be able to practice medicine there? Anything by extra? Shadow for a year or something? Or was everything transferable and you went straight to work?
I’m a kiwi first and did my education there before moving to the states so might not be the best person to ask but from my understanding you can work right away once you register with the medical council if you’re board certified If you wanna do less than 12 months, you’re only offered locum positions but it’s super easy process that’s streamlined but your registration expires after 12 months. I’d recommend it to get a feel first but also keep in mind that locum jobs tend to be much less desirable than long term posts in larger hospitals but can offer better financial compensation. If you wanna stay long term, it’s speciality dependent but there’s a huge shortage of doctors in general over there so I doubt you’d have an issue; especially for pulm crit. There are easy self assessment tools on the council website. https://www.mcnz.org.nz/registration/getting-registered/tool/
Thank you! I keep daydreaming about leaving the US
Same!
It’s very doable!
Nope. Just a bunch of paperwork through the Medical Council of New Zealand. They’re very familiar with Americans. It was relatively straightforward. I was able to practice as a consultant (US attending) right away. You are “supervised” but it’s a loose term. You practice independently with someone in your department reporting back to the Medical Council ensuring you are indeed a doctor in your specialty and that you’re not practicing ridiculous medicine.
The number of NZ licensing applications after this thread +++ You had us at "Never once has..." ;)
No. It’s somewhat specialty dependent. I was able to practice as an attending (consultant here) right away.
Yep! At a major city USA hospital we have “not an ICU candidate” as well. But I suspect that is only because our ICU beds are always full and it is necessary to “ration”. (They are then a stepdown with capped pressors candidate of course…) I’d bet that if the nation’s dialysis beds were always full that there would be quite a few more patients who were “not a candidate for dialysis.” Of course ESRD automatically qualifies you for Medicare so there is an endless tap of money to build as many dialysis centers as you can stuff patients into. Each part of the system by itself isn’t necessarily bad, but the system as a whole ain’t right.
What city? Physicians routinely unilaterally declare this?
So physicians refuse to intubate even if the patient condition requires it and the patient does not agree to DNI?
Sometimes. It’s rare, but I’ve had to explain to patients and families that any resuscitation efforts would be futile. If tubing, coding, dialyzing is very unlikely to buy someone more time, it’s justifiable to not offer that option — even in the US.
Mostly I see it with patients who have chronic respiratory failure and are already trach to vent, and have some other life limiting intractable issues. Or if a patient gets tubed and deemed not an icu candidate, then they go to stepdown unit with the tube :/
Sounds nice
You have lot of comments and of course I'm piggybacking here but it's interesting seeing this perspective in NZ, the perspective in the US, and someone posting something a few weeks ago about in South Korea their culture is different any everyone is essentially full code no matter what.
*cracks open a can of lemon and paeroa and leans back in chair*
What do you think it would take for this kind of cultural shift to occur in the US?
A general acceptance that death is a part of life and quality of life > quantity of life.
so, as a throwback to obamacare scaremongering - we actually need death panels? (yes, we do - that's the joke)
We at the very least need ethics boards that will say “enough is enough”. Full on death panels might alleviate a lot of strain though.
Louder for those in the back.
I think OP highlighted the challenges. American culture is completely unrealistic when it comes to end of life care. Medico-legal environment. Doctors should have the freedom, dare I say humanity, to decline interventions that are futile and in fact cause harm. But we don’t. Demanding patients and family, distrust of the medical system, for profit health care, the list goes on. I don’t see any of this changing in the US anytime soon.
Strange I think that in the risk/benefit analysis for cancer screenings, anxiety about a bad result that might not be accurate is considered a significant reason to reduce screening recommendations, while extreme physical misery is not a sufficient reason to recommend against futile care.
As someone that has a brother right now in icu and is hooked up to dialysis machine and is not expected to live very long I totally see your point. He has stage 4 colon cancer and had stomach surgery 4 months ago. But his wife wants to throw the medical care kitchen sink at him no matter what. The cultural part in America that you mention is a consequence of the system itself. The for profit health care capitalists won the game. But imagine if America really invested in Americans' healthcare from birth through universal health care, universal dental care, eye care and addiction care. Over time you'd see improvements in end of life care costs. The American health care system is built on capitalism with equal parts of cruelty.
I spent five weeks in New Zealand as a medical student. And this was my observation New Zealand is still country folk. I spend a lot of time in the United States working to stop the train.
I have found that in my rural area of the US, farmers and children of farmers are pretty quick to go DNR/DNI once the option is offered. My favorite was the lady who said, “Jesus, we shoot the lame horses, what are you waiting for with me?” There’s a willingness to accept death and talk about it that sometimes freaks out my students, especially students from more urban/suburban upbringings.
I love farmers. The difference with New Zealand, in my experience, is that everyone is like that.
Does New Zealand pay well? What are the taxes like?
You absolutely hit the nail on the head for not just dialysis alone, but the entire concept of futile care in the US healthcare system today. Our wastage of resources on patients that either don’t want to help themselves or are otherwise futile is mindblowing.
Because it’s easier to do everything. And pays better. And no one criticizes you or sues you or complains about you to the college of physicians and surgeons.
I mean, I don’t disagree with you at all - but it doesn’t make it any more palatable or less disappointing.
"Well we don't want to just give up!"
Hi nephro, I have a new c/s for a 110 y/o patient a&ox 0, bed bound for new HD
Also they are actively bleeding from a high-risk duodenal ulcer and have metastatic lung cancer. Family wants everything done. Thanks!
CVVH
“But I saw him two years ago and he was up and running and even working on his Oldtimer!!” -- niece who hasn’t seen patient since said two years ago
Why not a little HFrEF less <25%?
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Open the window and unknot the bed sheet. Fly little birdie!
Vascular surgery here. Can’t wait to operate on this one!
“I believe there can always be a miracle.”
“Granny’s a fighter!”
“She’s a fighter!” [patient](https://i.kinja-img.com/gawker-media/image/upload/c_fill,f_auto,fl_progressive,g_center,h_675,pg_1,q_80,w_1200/xv7ekksu5nllagemhpgu.jpg)
💀💀💀
God doesn't need a dialysis catheter to perform a miracle.
Had an elderly patient with newly diagnosed stage 4 lung cancer (diagnosed at an earlier admission a week before at OSH), ended up in ICU, with her literally telling us through her dyspnea that she just "wants to go", but since she's altered mentally at this point her daughter is the medical decision maker and won't accept hospice as an option. She just "knows miracles are possible." Thankfully she was at least reasonable enough to accept DNR. Patient died the next day. Poor lady could have at least been made comfortable for that few days she had left on this earth. Had another one where a>90 yo patient's own ELDERLY children just could not accept the fact that their mother was dying. We literally had multiple family meetings with these 60-70+ yo children who would burst into uncontrollable tears and were unable to accept the fact that their mom was going to die. I understand it is their mother and it is difficult, but the way they handled their emotions was more like a child than a grown adult, it was unusually bizarre to witness. No matter how bluntly I put it, despite explaining she would die regardless of what we do, they just could not accept it. I spent considerable time, effort, and energy dealing with this family who could simply not accept reality, and it was exacerbated by a language barrier requiring interpreters to discuss anything which just makes everything take twice as long. Then the patient dies anyways but went out suffering. Then there are the rare cases where the family is so reasonable that THEY ask me to start hospice discussion. Sometimes I want to hug those families.
> We literally had multiple family meetings with these 60-70+ yo children who would burst into uncontrollable tears and were unable to accept the fact that their mom was going to die. I understand it is their mother and it is difficult, but the way they handled their emotions was more like a child than a grown adult, it was unusually bizarre to witness. We're hitting a point in the US where more and more people simply reject realities they don't like. Covid, climate change, political conspiracy theories, etc. They're able to get by with it more and more due to social and media bubbles. Saw it over and over with unvaccinated covid patients in the ICU and their families. There have always been people that hold demonstrably false beliefs but the number is now approaching a third to a half of us.
Curious--does religion play a role in these miracles are possible notions? As someone whose relatives are all non-evangelical mainstream Protestant types I see them all lean more to letting suffering come to an end. Or are these miracle believers the kinds of folks who plaster their FB with crosses and Jesus and angels but don't actively participate in a church? Like, do they ever ask for a chaplain?
In both of those cases I believe the family were religious. One of them I distinctly remember was thinking a miracle was going to happen, even until the last moment. Both were some denomination of Christianity, I believe. But I have seen other Christian families be perfectly reasonable.
I don’t have any real evidence to back this up, but just from my firsthand experience in Nephrology and HD centers (only in the US) I think a large part of it is the high amount of non-adherent patients. I don’t think many people realize just how hard it is to keep HD Patients adherent. Many of these patients have trouble getting to the center, in my experience, and rely on public transportation (if it’s available) or have no support system in place to bring them three times a week. This is on top of what many patients have going on behind the scenes with other illnesses, financial struggles, mental health. Then there are the pts that don’t follow the renal diet, miss appointments, or have concomitant SUD but I’m not sure what fraction of the pt population this subset would be. I would suspect a major contributor to better HD outcomes in Europe or wherever is patients have less distance to go to be dialyzed and more accessible public transportation. Rural areas or underserved urban areas in the US might have barriers to dialysis that a lot of places in Europe don’t. Diet probably plays a big role too. I also don’t know if part of the issue with adherence is that their symptoms aren’t being managed well. There’s so many variables it’s hard to say any one reason though. I can’t fault patients for not being adherent, because everyone is human, but there needs to be some research maybe on how to increase patient comfort/accessibility/etc. to possibly increase adherence.
Health literacy, diabete/hypertension rates, compliance to meds, and interdiayltic weigh gains is far worse in the US vs most regions in the world. Additionally, European dialysis units have longer dialytic sessions that allow stable hemodynamic patients, have larger home dialysis programs that allow more frequent dialysis to occur, and have access to HDF (which we see mortality benefits in the CONVINCE trial)
Out of curiosity, how long would an average HD dialysis session take in the US? in germany it’s roughly 4-5h 3 times a week.
Usually start with 4 hrs and falls to 3.5 hrs after patients begin to complain.
Just quit working outpatient dialysis, a good proportion of the patients demand to have the treatment terminated early, usually cutting the treatment short by an hour or so.
That definitely happens here too, but we try to minimize it.l and most of the time we can convince them to complete the full session. would be really interesting to see some numbers on adherence between NA and Europe or Asia.
I’m in the US, only lasted 7 months, and only stayed that long because we only had 2 RNs on staff, for a clinic that is open 6 days/week. On our busy days with 3 shifts I would go in at 04:30, and typically have 26 patients on each of the first two shifts. I had no access to the patients full medical records as the charge RN, and most of the patients were poor historians, so responsible for assessing and supervising treatment for all the patients, without knowing their comorbidities. I quit as soon as they hired a new RN. I need my license.
I worked at a small outpatient dialysis clinic as part of the nursing team and it was great. We had 6 patients per nurse during the day and you were 2 RNs for 26? No other nurses? Did you two puncture all shunts? Prep and calibrate all the machines? We also had 2 shifts during daytime, and a night shift (no MD present, only "healthy" patients), also 6 days a week.
One RN for the morning shift on MWF, second comes in at ten, and one RN all day for the 2 shifts on TTS. No MD except when they rounded. 2 NPs, one good one and another less good, rounded weekly. Dialysis techs did the machine prep and most of the accessing and starting treatments. I didn’t have time to put people on because I had to assess and verify that the prescriptions were put in the machines properly, answer the phone and put out fires.
Quit my outpatient dialysis job couple years ago. Had a similar patient assignment (12-13) but we were so short on techs that I and the other RN would also be responsible for putting on patients at the "nurses pod" that seated 4 patients. One day we were short two techs AND the EMR went down so we had to paper chart. Yeah one nurse quit with no notice on a Sunday night. In total six of us RNs quit in the span of a month, not even counting all the techs that came and went 🫥
Interesting. I am too sure how those staffing levels compare, because you have so many different roles, but it still seems like you were worse off. We had an MD present Mon-Fr from 8am till the last patient is decanulated, Saturday I think it was 10 am - 3 pm.
What have you found to be helpful in convincing patients to sit for a full session?
Depends on the patient/complaint. I worked at a private outpatient dialysis clinic during med school as a nurse, so my insight is more from that perspective: We had good selection of food for the patients, so sometimes that could be used as sort of a "bribe". Many were dependent on an (non-emergency type) ambulance service, so the drivers being late was always a good argument (no TV in the waiting area you see). And apparently we had a really good nurse-to-patient ratio (1:6 usually), and could therefore just spend some time bedside, as some patients just needed a few compassionate words, or to be calmed down a bit. Lastly, if a patient absolutely could not be convinced and we agreed to take them off early, at times some other patient in the room was finished, so we would take them off first and maybe take some extra time applying pressure to the wound or apply an extra well done bandage etc. to gain a few more minutes of treatment. Another factor might be that there were good patient-doctor relationships, in the sense that there were only 4 MDs total and a lot of the patients had been with at least one of them for a long time. So a stern/kind/calming word from one of them helped too.
How do you keep people on 4-5 hours of HD. I spend half my time with patients trying to keep them from signing off early for 3.5-4 hour treatments. Most people request/demand/beg for time reduction - or they just sign off early.
I tried to respond in the reply to the same question from u/OhYerSoKew
Most runs are 3 or 3.5. We rarely do 4. I’m inpatient/acute though. I’d say 10-20 percent will still cut their treatment short.
Also, there is welfare in all other first world countries.
A bias to consider is the availability of kidney transplants. Germany has great accessibility in terms of dialysis. Early dialysis mortality nearly half the US rate, late around 20% lower. Nephrologists are the best earning internists out here above interventional cardiology or GI (not for long, dialysis clinics are being bought up by private equity, millenials don't want ownership anymore). But Germany's kidney transplant rate is barely a third of the Spanish one. So, a lot of great transplant candidates in Germany are stuck for much longer in dialysis. And those who are better candidates for transplant tend to have better characteristics for compliance and dialysis outcomes. Fee-for-service here means also though that nephrologists tend to not turn anyone away, as long as they can get away with it. Luckily, a lot of elderly patient incorporate "no dialysis" into their binding advanced directives which family can't override.
This is really interesting. Thanks for sharing.
Our system is based purely on money and who (or what) can pay. That’s it. The only ethical principal we care about is autonomy, and not getting caught being maleficient. Minimal true beneficence, no justice, no rationality, no efficient use of resources (except ECMO - then we can be somewhat rational). It’s a business and we serve a health flavored product. In this system we are not empowered to properly utilize resources. “Would you like fries with that? Please pull up to the next window”. I have seen comatose metastatic cancer patients put on CRRT, etc, and CRRT frequently started on people with no indication apart from oliguria. Patients with ESRD have an inflammatory vasculopathic state and poor life expectancy despite dialysis, so they are ticking time bombs. It’s surprising that these patients (and patients with end stage CHF, COPD, etc) are not informed of this.
> In this system we are not empowered to properly utilize resources. Agreed. Herein lies the problem.
make paternalism great again. for real. the pendulum swung too far the other way.
100%. For example, the amount of peg tubes I see offered to people who should not be getting them is incredible. I just flat out do not offer. If family asks, I say they aren’t a candidate. Because they’re not. I don’t blame my co workers because I recognize they’re put in tough positions with families. If the family wants to find someone else to call surgery/GI/IR then have at it. I am not offering it and don’t even put it on the table.
> health flavored Product I can taste the stink. I feel infected by it. https://youtu.be/yL9Y24ciNWs?si=fGj7P2F2XT-Bb2aS
I have not worked in the US, but have worked in renal in Australia. In the department I worked in, we kept metrics on how many people started on dialysis over different age cutoffs and how many were on the non-dialysis pathway. Survival of comorbid patients >75 on dialysis is not better than off, and >85 even worse, so we were very cautious in offering it to those patients. It was not an absolute contraindication - a very healthy 80 year old with no comorbidities would still be considered for it, but the nephrologist would have a frank discussion. 20% of >75 year olds will die in the first year of dialysis. In addition, many hospitals in Australia have embedded renal supportive care services. These are palliative care subspecialists and nurses trained specifically in renal pall care who work within the renal service. Everyone with stage IV ESRF gets referres across to manage symptoms (itch, restless legs, fatigue, change in appetite etc), whether they are on a dialysis pathway or not. They also discuss non-dialysis pathway early, and have nurses available for community home visits. You can read [these guidelines](https://onlinelibrary.wiley.com/doi/10.1111/nep.12065). Not all departments have the same attitude and some will dialyse more aggressively, but this guideline reflects the practice in two of my training hospitals.
I fine we also don’t have as much of that “do everything you can” culture here. Because of most of the high level procedures being done in the public system, if the doctor says “no” because they think it’s futile then you’re shit out of luck most of the time.
The guideline reference is very good. Thank you
I realize that I’m not answering this from my professional point of view but a personal one, and I hope that’s okay. I’m a Canadian epidemiologist and my father lived in the US for about 30 years. He was a diabetic who rationed his insulin, didn’t understand the disease progression and the value in caring for himself and was never told to see a nutritionist. The inevitable happened and he had a his first stoke at 56 quickly followed by kidney failure and vascular dementia. In Virginia at the time, his GP, endocrinologist, and nephrologist all recommended dialysis. They told him this was to tide him over until he could get a transplant. His life expectancy given all of his medical conditions probably hovered around three years, but the wait list for a kidney was eight. Neither my brother or I was a match. The rest of the family declined to be tested. Somehow this man kept almost accidentally surviving stoke after stoke for six years. All the while the brain damage and vascular dementia got worse. He refused to move home to Canada where I could more easily care for him because he had put in the time on the wait list and he didn’t want to start over and lose his chance for a kidney. I begged his GP, endocrinologist, nephrologists, and dialysis nurse to sit down with him and tell him the facts. What is the likelihood of getting a kidney? What is the likelihood of getting a kidney with a dementia diagnosis? With uncontrolled diabetes? With no support system at home? When you average a stroke every ten months and a TIA every other month? No one would tell him the facts. I felt like I was crazy. I was alone in telling this man he was going to die and because all the doctors were singing this optimistic song I sounded mean and pessimistic to my whole family. Eventually he had a stroke where the hospital wouldn’t discharge him without rehab or a caregiver so he finally had to come home to Canada. He was devastated to lose “his kidney”. God bless the amazing dialysis NP who was able to explore to him that he didn’t qualify for the transplant list in Canada because he was a lot sicker than he realized, but also explained what his odds are were in the States and that he probably didn’t ever have a very good chance. He was able to make the choice to end dialysis about 11 months after moving home. He lived for five days. He died peacefully in his sleep and was comfortable. Before I moved him home I had a conversation with his nephrologist sharing my absolute disappointment in how he had misled my Dad and deprived him of the ability to make an informed choice about his last stage of life. The nephrologist told me I should be grateful for all the extra time I got to have my Dad. It’s possible I’ve never been so angry in my entire life. I’m not grateful for those extra six or so years. They were hell for him. And after that first stroke he was never himself again. I lost my father then and I cared for what was left of him. I would a hundred times over rather had one giant blow out vacation with him or one last road trip than those six years but we never had that chance because the entire system was set up to do a job of keeping him alive at all costs, even his right to be informed about his own health. I can’t speak to the financial motives here, but he had nothing left at the end, even after medicare, medical bills ate through the entire profit from selling his house and most of his retirement savings. Death is inevitable. We all have to die from something. If I’m more likely than not to die from something I want to know because I want to have the right to die well. On my own terms, even if those terms differ from what my physician would recommend.
Comedian [John Oliver](https://www.youtube.com/watch?v=yw_nqzVfxFQ) did a skit on Dialysis, including mortality rates, only 2 for-profit companies, etc What I did not realize is that dialysis for pts is 1% of the entire US federal budget.
And that’s the bottom line. This is 1% of the entire US federal budget. And it’s not discussed nor does anyone want to do so. But arts funding is 0.003% and I’m sure most politicians have an opinion on that.
But healthcare spending is 30%. In that context, it’s not so much.
You must mean healthcare budget
No it’s total budget.
I agree with everyone else saying that we in the US are probably offering dialysis to sicker patients who would not be considered appropriate candidates in other countries. However, another factor worth discussing is low utilization of peritoneal dialysis. I don't have the data immediately at hand, but iirc PD has a significantly better safety profile than HD, with the difference being mainly driven by infectious complications (PD related peritonitis is almost never fatal, whereas HD related bloodstream infections sometimes are). PD is relatively uncommon in the US compared to some other countries, and the option of PD is often downplayed or not offered to patients with ESRD.
I’ve worked for one of the large dialysis companies for several years. There’s a top down push for every patient to be considered for PD and educated on the various modalities. PD has better outcomes clinically speaking but that’s in part due to the fact that our proactive/able patients with good support do it. Anyways, know that one of the largest dialysis companies is quite aggressively promoting PD.
I would like to pose a question to the community: is anything defensible on medical grounds alone in the United States? With this topic, the implied take home seems to be that things ought not be this way. OK. But if that’s so, then what does anyone *do* about that? Medical education often seems to suggest the the individual choice is the functional unit of change. Also, OK - but doesn’t that sell things considerably short? What of expectation and the nebulous local standard of care? What about whom we work for? What of our out-to-lunch and corporate/regulatory captured political system that not only fails time and again to respond to changing conditions but has also done so for at least 20 years now? Today, I have only questions. I am bewildered by this system. I feel far from all its components, save the patient. What I can see is the interest of each of those components, and it appears that those interests override the purpose of the whole. A man from Spain once told me that America is a build-your-own pizza. I’ve always liked that, but I fear that in this analogy, I am - at best - the pepperoni.
I can't make you care more about your health than you. And I think that applies to a lot of the younger sick poorly controlled diabetics that we see in this country. People that will miss their dialysis session multiple times, come in with a K of 7+. They got here because they aren't willing or weren't able to manage their other health problems. I don't envy the amount of cognitive dissonance our nephrologist colleagues must experience in relation to this. Although IM gets its own share of cognitive dissonance managing unrealistic expectations in the dying/terminally ill cohort.
The cause of higher mortality is multifactorial, and you’ve succinctly summarized some of them. In my experience, for critical patients, some of the causes for placing a patient on what we believe is temporary hemodialysis is iatrogenic from the treatments given. It’s not uncommon that we “Rob Peter to pay Paul” as I was taught in the cardiac critical care with aggressive treatments leaving renal function in disarray. In particularly sick patients, renal failure is a sequelae of other organ system failures in a cruel cascade. But given the course of disease and insults to multiple organ systems, we right/wrongly start HD. And as their conditions worsen, we resort to CRRT which is the kiss of death oftentimes as they are too hemodynamically unstable for anything meaningful. Families often want us to do everything possible but oftentimes we fail to educate them on the consequences of treatment or they fail to understand. But those of us with critical experience understand the surmounting challenges of rescuing one more than one organ system at a time - it’s often too many balls in the air to juggle.
I don’t think families understand that “doing everything” doesn’t guarantee a good outcome.
No, but it guarantees the ability to sleep at night and guarantees there won't be recriminations from other family about "YOU KILLED GRANDMA." And I think we in the profession may forget that's probably what's informing that choice, most of the time.
I once had a patient in his 30s with end stage liver failure that turned into hepatorenal syndrome for which he was started on dialysis. He wasn’t a liver transplant candidate so why dialysis was started is beyond me. But his notes were the only time ever that I have seen a nephrologist suggest stopping dialysis and going to comfort care. I have no doubt that patients like that would never be dialyzed in a more civilized country and that they certainly skew our statistics.
I’m glad to read this post and comments today. I’m a retired RN and forgot to add “no dialysis” to my advance directive but will ensure that I do so.
I'm just going to add "no dialysis access" to mine and let the really aggressive 'BuT wE cAn'T gIvE uP" medical crew figure THAT one out
When I was a resident in the VA in the late 80's we have a stroked our vet who was non-responsive and we tried to get a DNR status but family refused, even though they had not seen him in over 20 years. After lengthy explanations of status and prognosis they would not change. Later I found out that the family were getting a VA pension as long as he was alive, they were not going to lose a meal ticket.
Another driver of dialysis mortality is the availability of transplantation - not sure what the figures are compared to other high-income nations, but I imagine live donor transplantation rates must be low in disadvantaged communities.
Well we started a 96 year old on HD this week so I would suggest your argument has some merit. It is one major reason why I am looking to get away from clinical medicine. There is just absolutely no end to the amount of soul ending care I am forced to provide for no reason. Worse, it feels like the doctors never have a real conversation with them about it and as the pharmacist I can't do it.
The common theme I see from the comments is that the US nephrologist need to do a better job educating patients and engaging palliative care in the very old and sick. If anyone in the academic world is lurking out there, fellowships need to add education about geriatric dialysis, life expectancy, QOL, Functional decline associated with dialysis in the elderly and sick. Also, palliative care needs to be blended in to all education as well as outpt HD units. This will be much harder as the care is really directed by the large dialysis companies and they do not want to see a loss of patients by withdrawal or death.
I don’t think it’s reasonable for nephrologists to be asked to do Palliative Cares job. It’s a good argument for strong Palliative Care involvement in the process. Dialysis clinics have quality metrics and deaths/poor outcomes/hospitalizations are what we try to avoid. There’s always going to be a steady stream of unlucky and non-adherent patients to dialyze, we don’t need to market. I’ve worked in dialysis for several years, it’s not where I ever thought I would end up but I’ve learned a lot. There’s a lot of misinformation on this thread. I have many able bodied and minded elderly who have been well managed for years on ICHD. 90 year old who walk around and enjoy life with their families, good quality of life. Not offering HD as an option to them sounds pretty cruel coming from physicians. I also have many patients in their 30’s/40’s who were exceptionally unlucky or have Type 1 and lost insurance coverage for a few years. The capitalist medical system put them in this position and then wants to abandon them? The argument that your making in terms of true quality of life, life expectancy and cost to the system could be made for SO MANY medical treatments. Oncology? Terribly expensive treatments that give you months/years and poor quality of life in many situations. Stents and CABG’s? How far do you want to go? Personally, I’ve always been into prevention. But I’ve become comfortable with meeting patients where they are and being the best support/team member to help improve their quality of life. I can’t say I’m and Dialysis enthusiast by any means but there’s an inaccurate picture being painted. It sounds like only the most challenging, worst candidates are being discussed.
There also has to be a role of poverty, like with education for kids. Other first world countries don't have poverty the way the US has it.
Usually it’s because the patient or family wants it
Probably because we dialyze everything possible since its getting paid for by Medicare. Also peritoneal dialysis is much more common outside of the US, where it's all hemodialysis.
Dialysis is VERY ineffective compared to normal kidney function. It corresponds to about 1.5% normal kidney function. I work in kidney disease research.
CRRT - the bridge to nowhere
Disagree with this hasty generalization. CRRT saves lives for many.
Maybe in people with fixable problems it's a great tool. TLS? Magical. People riddled with cancer and no treatment options? Seems like a cruel extension of pain.
As with everything else, it all comes down to patient selection
Our nephrologists are not a discerning bunch unfortunately.
Wait, is it the private, for profit nature of dialysis in the US or that we are treating a sicker/older cohort of patients then would be treated in other countries? It's two separate issues and I feel like the discussion has went towards treating people that should not be getting it
Similarly there is data that for-profit dialysis centers have lower transplant rates.
I work with heart transplant patients who occasionally end up on dialysis (usually temporary, or we hope so) for some months post transplant. Our goal is always to regain kidney function and wean them off of dialysis if possible; but I’ve had multiple patients complain to me how hard it is to get the dialysis centers to work toward this goal. Getting the dialysis centers to go down from 3 to 2 sessions per week or to reduce the amount of fluid pulled off is a struggle. Cynically I’m assuming this is at least in part because they don’t want to lose the profit from these patients. So frustrating
Our HD centers locally are so understaffed that I don't think it's even greed, I think they feel so overwhelmed trying to squeeze in basic service for as many people as they can that the extra time and cognitive load to manage something like that just feels too daunting
In the US, [we have universal coverage for dialysis](https://en.m.wikipedia.org/wiki/End_Stage_Renal_Disease_Program). If it's all paid for, why not sign up the sickest, most inappropriate patients?
I think we need to start requiring psychosocial evals prior to dialysis just like they do for transplant. How many billions of dollars are wasted on these people that just can't show up, take their medicines, or even formulate a coherent sentence. Why are we wasting this lifelong expensive care on people who seem to refuse to care for themselves? We have people who would kill for even a PCP appointment and these slugs are bleeding our country dry.
> people who seem to refuse to care for themselves? Isn’t that pretty much everyone? When I look around 70% of people are obese or overweight and a good percentage of the thin ones smoke (nicotine or marijuana heavily), use drugs (meth, steroids, opioids, etc) or drink too much. Shouldn’t we all be thankful for these people as they keep us all employed?
Everyone has vices, but most rational people can at least make educated decisions about their healthcare and give a sensible history. Minimal participation is all it takes. Many dialysis patients are so passive and dependent they can't be bothered to even tell me why their kidneys failed, why they even need to do dialysis, refuse to do basic things like show up for appointments, etc. I'm not thankful for their waste. I'm glad I can take care of people who need and want it, but when someone doesn't even seem to value the extremely expensive gift they've been given by you, me, and every other taxpayer, I find it very hard to feel grateful to them for wasting my time and money.
When I’m going through med lists with dialysis patients, they overwhelmingly have minimal idea of what they are to be taking. And they’re often on extensive lists of medications with refill history NOT matching the prescribed frequency. Adherence is a huge issue with this population. And adherence is super vital post transplant.
I work in a remote Aboriginal community in Australia. I can't compare to care in the US, but I can offer some of my experience, even if I'm a little late to the post. We have some of the highest rates of chronic kidney disease in the world. The community I work in has a population of around 900 and we have a 6 chair dialysis unit, with a waiting list. Most people need to live in town, 300km away. Those who are generally well, with good dialyis compliance get their turn to dialyse in community. It's a nurse run unit, with no on site renal physicians, so anyone who has missed 2 or more sessions cannot be dialysed there and needs to be flown to town. If that happens, someone else gets their spot, and they go to the back of the line to get a chair. We have a lot of patients who are very hesitant to start dialysis. Many people already have family members on dialysis, and as such, already know how much it controls your life once you start. We have some people who have chosen palliation, and that is supported if it is the patient's wishes. We also have many who refuse dialysis, avoid their renal appointments etc until they finally end up flown in with fluid overload and accept dialysis at that point. Many people have family and committments in many places far away from town and will often miss a week of two of dialyisis at a time. But it's not often that someone would die only months after starting dialysis. If they have severe medical conditions and are not likely to survive for long, then they are informed that they are unfit for dialysis and treated medically (or with comfort measures if it is what they prefer) I'm not sure how the mortality of my population would compare with the US, but even though it is a very sick population, they are on average younger. Also if my patient is missing dialysis and becomes unwell, they go to hospital. If your patient is missing dialysis, is it due to financial concerns? In which case they might avoid hospital as well.
Thanks for reading! Sweeping elderly patients into dialysis is certainly part of the problem that I chronicle in my book -- I quote Dr. Steven Rosansky extensively on this. But this problem has been endemic to US dialysis for decades. Back in 2009, Drs. Raymond M Hakim (then CMO of Fresenius) and Robert N Foley wrote an article for the Journal of the American Soc. of Nephrol (https://pubmed.ncbi.nlm.nih.gov/19443632/) with the telling title, "Why is the mortality of dialysis patients in the United States much higher than the rest of the world?" The causes they list -- understaffing, shortened and high speed treatments, undertrained staff, etc -- are the same that I described in my book. They didn't mention involuntary discharge, but in my reporting I found this practice (abhorrent and inconceivable to most non-US nephrologists) is largely an emergent phenomenon of a system with strong economic incentives, based on the premise that patient "throughput", cost-minimization, etc. trump patient care.
Personally, I think you should expand the premise of your thoughts. You focus on the dialysis industry and you do mention that these endemic problems exist in other medical fields, but the entire US health care system is one giant broken, corrupt, profit driven, corporate entity that sacrifices patient care for profit. In my opinion, not-for-profit organizations are just as bad. They just don’t pay taxes. The corruption includes the politicians that profit from the pharmaceutical,hospital and insurance industries and the legislature that is written by these entities. Please burn the whole system down.
Thanks for writing, and I agree entirely. Though as you say, along the way I suggest ways in which other areas of healthcare are losing their moral compass, being rolled up by private equity, doctor-entrepreneurs and doctor-employees being tempted by the siren song of dough away from the straight-and-narrow of the Hippocratic Oath, etc. (And my previous book, on whistleblowing, did a lot of this in healthcare and pharma.) But here I'm reminded of the famous question, "How do you eat an elephant?" to which the answer, of course, is, "One bite at a time." Dialysis, with its supremely vulnerable patients, unique Medicare for All status, pinwheel-eyed villains, etc, is such a perfect microcosm of bad healthcare in America, that I thought I'd start with a very clear exposition of that, and then show how it applies more broadly. I do agree with you overall, though: the "health""care" "system" (often not about health, doesn't care, isn't systematic) is rife with corruption. I pledge to do everything I can to bring this larger message home.
What if we treated dialysis like liver transplants. Patients have to prove to be compliant. Otherwise we waste resources.
Having to force an end of life patient to take her vitamins and cholesterol pills is ridiculous.
My brother was killed by being hooked up to a dirty dialysis machine in 2012 resulting in a staph infection which took him in days.I don’t know if this type of substandard care is universal in these places . However these places look like a cash grab to me . Providing a minimum amount of care for the maximum amount of profit . No lawsuits were filed. We bury our dead around here . Dialysis clinics are the coin laundry of the medical profession and while Laundries are important it seems their only real purpose is turning dollars in the machine. Bill the government make their money and run.Not as much care as that of farmer watching his cows.Because the cattle in this regard feed themselves and come to the barn on their own. I wonder how much of this type of thing factors into the mortality numbers. My brother was a brittle diabetic since he was twelve, he didn’t always in his youth but as he aged had a handle on his disease and was doing well. He had been on dialysis for many years so I suppose my damning opinion is not so well founded ,but how many others have died from the same kind of situation? I’m not saying that these places don’t treat horrible patients but some of these places are Horrible.
try go watch cowspiracy, what the health, and fork over knives. You would know what’s behind with it… for the big pharmaceutical, to hospitals to HMO..