Very, very different. Which, to be fair, may mean that my doctors aren’t doing it…or it may mean that they’re doing it in a way which feels clear and communicative to them, but it’s not landing with the patient and family.
You know, the other thing that’s occurring to me now is that, while I do appreciate the anecdotes, I think the personal experiences of Dopers probably don’t mirror those of the population as a whole, and what’s right for them is probably not right for many (if not most) Americans.
I think many Dopers are the type to get online and research all the different options and want to know about them from their doctor and then make a decision. But, actually, I would not be surprised if a majority of my patients cannot even read in their native language, let alone in English. They certainly haven’t researched beforehand or even know how to go about finding more information. I actually think many of them don’t even really understand how to take their medications, and more than that, I think they lack a sense of “agency” when it comes to health care . . . they are somewhat passive and can be a bit helpless as well*.
So I think that’s another wrinkle in this issue.
*I do not mean this as a criticism of my patients at all. While I do find it frustrating at times, I also understand that the difficulties with providing health care to this demographic is basically a systems issue and not really a personal one
So, sorry, I’ve wandered a bit, but, back to the OP:
You say:
So what is stopping you from doing this? Are you not allowed to, by facility policy or by standards of practice or by law? You say that doctors should be able to do this, which I’m interpreting as saying that now, in the US, doctors can’t, unlike in the UK. Is that so?
Also, I just this minute heard on the news that Medicare approved the proposal for payment for end of life discussions. Does this change anything? Will you be more likely to have these discussions now that you can bill for them, instead of a procedure or intervention?
OMG, I totally can imagine that they think it’s clear and the patient/family does not, and if patient/family doesn’t have a good advocate or is somewhat passive/intimidated and doesn’t pipe up and say, “what? I don’t understand, explain this again” (and I know that is hard as hell to do because doctors always seem busy [they are always busy] and vaguely irritated to have to be talking to you . . . )
This is turning into thread drift, but I have had more than one situation where I really thought the patient got it and they definitely did not. In one situation, I had to call a patient to give them a very serious diagnosis (the patient made it clear she wanted to know ASAP). I used a phone translator in the patient’s language, asked her if she had questions at the end, and she made a statement which made it seem like she understood. However, when she returned for a clinic visit with her family, it was beyond clear that she actually had no idea what her diagnosis was, and the family was understandably pissed. Maybe the patient actually had undiagnosed dementia? I don’t know, I really thought I was clear.
Anyways, this has happened to me more than once. So, I can imagine that there may be vast gulfs of communication between patient and doctor.
Another classic is having an intern telling the 70-year-old, hard of hearing, CHF patient about to be discharged, “okay your weight is 185 kg weigh yourself every morning if you weigh more than 187 take an extra lasix okay?” And of course the patient just nods and says yes because he is scared and doesn’t want to look dumb and just wants to go home already.
On the other hand, I have to say, I don’t think it’s fair to expect the doctor to do all the explaining for some of these things . . . PCPs are already stretched so thin, and some people need A LOT of time to learn things (which you can’t bill for). I think the ideal bridge is what you do, WhyNot, as a nurse educator. Especially in the home. I cannot even imagine how many re-admissions and “failures” of therapy you have helped to prevent. You guys have a really difficult and thankless job, so thanks for everything you do.
Okay sorry I’ll stop with the off-topic.
So, I’m honestly not sure why we have this “rule,” but the unofficial rule, at least at my facility, is that we offer the patient or family resuscitation and intubation. I often say that I advise against it, but I always offer it. Not sure if others have other experiences.
Right now I don’t actually bill per patient and so am not really as crunched to see as many patients per day as possible, so I try to have DNR discussions with those that I think need it (mostly my few geriatric patients and my few metastatic cancer patients. I have a couple of others that probably could use it, but honestly I’m pretty green to medicine and it’s harder for me to do that with certain people). I am glad that PCPs can now bill for it though. In general, I would like it if we could reimburse more for time spent thinking/reading/researching about a patient’s care (whether it’s chart review or looking up trials) and time spent in patient discussion. I would love if some of the money that we spend on procedures can be directed more this way.
Yeah, it’s hard, no doubt. Medicare requires us to ask about Advance Directives and DNRs at our first visit, which is really the worst time to talk about it, before that relationship develops. I use that first visit to ask, so I can document, if they already have any ADs, but I do have to remember to bring it up again once they trust me enough to have a real discussion about it. And I can only educate about DNR. After that, they still have to have another discussion with an MD to actually get one. I can’t tell you how many people tell me they don’t want CPR, but can’t actually bring themselves to tell their doctor that. And without that order, I have to break ribs if it comes down to it, even if I know they don’t want it. Stupid system.
So much yes. I just got 30 pages of notes on a 3 day hospital stay, with 9 different consults. And that was the abbreviated version, without labs and test results. Patient described in one note as “An unfortunate 53 year old man.” I’m not sure if the doctor meant to say that, but it was actually a perfect adjective. There’s no way to read this file in anything under an hour and really make sense of such a complicated case. You should absolutely be paid for that time. (As should I; I’m not paid for that, either.)
Right. UK experience incoming.
TLDR: I don’t know about elsewhere but the NHS both in England and Scotland did a very good job with my father.
Do remember that the NHS operates across the UK, not just England.
My father (of whom I have written anon) developed dementia some years ago. At the end of 2013 he became jaundiced. At the start of 2014 he was admitted to a NHS hospital and they found that the duct that leads to the pancreas was blocked. He was 88 at the time. They put in a stent to relieve the jaundice and took scans. The scans showed cysts or growths on the pancreas. One had pressed against the duct and blocked it. As the jaundice had gone, he was released from the hospital. We spoke to a surgeon at a follow-up meeting and he advised us that the surgery would be very difficult for someone even half his age, and at his age he would most likely not survive, so they were not going to operate. He was taken ill at Christmas and went first to a hospital and then to a local (NHS) hospice where he died in late January. The hospice care was absolutely wonderful. There was a high ratio of staff to patients. He had a private room with some personal effects - none of which were stolen or ‘went missing’. The visiting hours were very good, and communication between the hospice and my mother was excellent. We got The Call one morning and two hours later he died. They looked after my mother wonderfully, and followed up with excellent pastoral care.
I’m sorry that your father took ill and passed, but I am so happy to hear that you had what sounds like the best possible experience under the circumstances. I know you and your mother are busy, but if you haven’t communicated to the hospice workers how much you appreciated their care, I’m sure they’d love to hear it. People who work in palliative care have difficult jobs, and I think that oftentimes a major incentive to work for them is knowing that they do make an impact in times like this.
Some questions, if you don’t mind:
- Did you ever meet with a medical oncologist? If you did, was chemo offered?
- How “functional” was your father at the time of his diagnosis? I know he had dementia, but was he self-sufficient bathing, toileting, eating? was he able to walk?
- Did you feel the care he received was appropriate and adequate?
- Did anyone talk to you about DNR?
- Do you know other people in similar situations? If so, and if you could relate their experiences as much as you think they would be comfortable with, I would be interested.
Thank you for sharing.
[QUOTE=WhyNot;18826669
So much yes. I just got 30 pages of notes on a 3 day hospital stay, with 9 different consults. And that was the abbreviated version, without labs and test results. Patient described in one note as “An unfortunate 53 year old man.” I’m not sure if the doctor meant to say that, but it was actually a perfect adjective. There’s no way to read this file in anything under an hour and really make sense of such a complicated case. You should absolutely be paid for that time. (As should I; I’m not paid for that, either.)[/QUOTE]
Ugh, preach girl. I am really thinking about going into a field that is very chart-review heavy, but it really does bother me that, after an hour of chart review, I can only bill the same as a surgeon who quickly reviews the vitals, labs, presses on the patient’s belly and then says, “no surgery indicated.” (as is my understanding of billing, which is very rudimentary. Also nothing against surgeons who have really difficult jobs that I could never, ever do with lots of liability. I’m just a little bitter that I get neither the status nor money :)).
Certain groups in the US have been subject to various medical abuses in the past so the notion that doctors are NOT making decisions in their best interests has some basis in fact among those folks. It’s not just about financial costs, it’s also a fear of being seen as disposable, not worth as much as someone else, and less valued by society.
Yes, and no respectively. Surgery was required.
Apart from the dementia, the first time around he was reasonably functional; the second time, not really.
More than adequate.
We already had one in place.
We were very fulsome in our praise to the staff at the time.
It is a complicated problem and entails decisions I would not wish on anyone. However, I do query your claim that cost is not a factor. I believe it most likely is a factor, it’s just a factor your are unlikely to find written down on a memo or an individual care plan.
Must not have been the VA, or it would have been 300 pages! :rolleyes:
snort If it was the VA, I’d still be calling for a discharge note, give up after 14 phone calls, and ask the patient if I could read the discharge paperwork that hopefully they sent home with him. :rolleyes:
Only indirectly, if at all. All the funding is done through block contracts and global budgets; doctors don’t stand personally or institutionally to gain or lose because the service is being taken up by one patient rather than another. I suppose it’s not impossible that at different times they are more conscious of pressures on bed numbers, and patients in less acute circumstances who may be having to wait longer, but I don’t see how any doctor is going to be even tempted to think “The sooner this patient dies, the sooner that patient gets their operation”.
I should add, the one potentially contentious cost-related element would be ultra-expensive cancer drugs that are likely to extend life only by a short period and which would normally not be considered cost-effective enough to be made universally available in the NHS. Drugs that have met the cost-effectiveness criterion (currently a maximum of £30k for an extra year of life) must be paid for by the NHS if a doctor prescribes them, but for these few expensive drugs, like Herceptin, there is a separate central budget, which may or may not be all used up for the year at the point a doctor might choose to prescribe them.
CRRT (continuous renal replacement therapy) usually isn’t either. The one time I saw someone go off CRRT and be discharged from the hospital alive, that person came back within a matter of hours and died on that admission. I do know that it’s done on critically ill children who cannot be hemodialyzed, usually with very good results.
I’ve seen many references to critically ill public figures getting CRRT (they don’t use that term but I know what they’re talking about; I’m pretty sure Lamar Odom is or has been on it in recent days) and the one time I’ve heard of someone getting it and recovering was Dr. Ian Crozier, the WHO physician who got and survived Ebola. He was on it for almost a month. :eek:
I had my will written up about 10 years ago (which reminds me that I need to update it) and it did include an advance directive. Funny thing is, just a few days later, I went to the ER with an injury and they asked me as a matter of routine, and I replied, “I know most people my age don’t even think about them, but in my case, the answer is yes.”
p.s. I’ve never worked in a place that offered ECMO; it seems to work best for newborns as a bridge until they can have an otherwise incompatible with life heart defect repaired.
I, too have seen things like people in their 90s with late-stage Alzheimer’s who were on cholesterol meds. :rolleyes: Hospice, too. Get real.