Wednesday, November 23, 2016

The Role of Cranberries in Preventing Urinary Tract Infections

Just in time for Thanksgiving, we are having a GeriPal podcast episode dedicated to the humble cranberry (click here to listen).

We discuss the use of cranberries to preventing urinary tract infections with Dr. Manisha Juthani-Mehta.  In addition to hearing about something called proanthocyanidin, we discuss her recent publication in JAMA on whether cranberry capsules decrease the presence of bacteriuria plus pyuria in older women living in nursing homes (spoiler alert - they don't).

If you want to read more about the paper, as well as a Cochrane review summarizing the evidence for cranberries to prevent urinary tract infections, please check out the following:

by: Eric Widera (@ewidera)


GeriPal Podcasts can be found on:

Transcript of the Podcast:

Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, we have a special guest with us today.

Alex: Who do we have today, Eric?

Eric: So we have Dr. Manisha Juthani-Mehta, who's with us. And can you, Manisha, just describe where you are and what you do?

Manisha: Absolutely! So I'm a faculty member at Yale School of Medicine. I'm an infectious diseases specialist. I've been doing research on infections in older adults for about the last 14 years and I'm also the ID (Infectious Diseases) Fellowship Program Director here.

Eric: And you have written a lot on geriatrics and palliative care infectious disease issues, especially writing about UTIs in older women. I remember a 2014 JAMA article. That is one of my favorite articles when it comes to UTIs and how to think about them in older adults. Is that right?

Manisha: Well thank you! I've never thought of myself as haven written so much, but it's nice to have a fan and somebody who actually knows your work.

Eric: We just had journal club on one of your articles, “The Effect of Cranberry Capsules on Bacteria Plus Pyuria Among Older Women in Nursing Homes”, just published in JAMA late last month.

Alex: It's topical! It's Thanksgiving!

Eric: It is Thanksgiving time.

Manisha: Exactly, that's why I think it's so timely, because people obviously are thinking about all the cranberry products that they love at Thanksgiving time.

Alex: It also stirred a little bit of a controversy online, but maybe before we get to that, we can just talk a little bit about why you decided to study this.

Manisha: Absolutely. So as you know, UTIs are certainly the most common infection diagnosed in older women in nursing homes. One of the main challenges is that it's so difficult to differentiate asymptomatic bacteria from a symptomatic UTI population because of the challenges with deciding what's a real symptom and what really is a clinically important UTI that deserves antibiotic treatment. And so I spent a number of years trying to figure out better ways to prevent, to diagnose, to manage UTIs and I started a couple of different pilot studies. The first one was looking at the feasibility of cranberry capsules in this population. And the reason we got there in the first place is because of a 1994 JAMA paper that looked at cranberry juice cocktail for prevention of UTI in older nursing home women.

That particular study, which was conducted in assisted living facilities and in nursing home residents showed that 10 ounces of cranberry juice cocktail was effective at reducing bacteria and pyuria in that population. But the reality is that it's so hard for so many women to actually drink 10 ounces of cranberry juice cocktail. Some of them complain about the taste, some of them don't like the glucose load, some of them are just are trying to avoid hydration, period, because of incontinence. And so this is why the idea of capsules was an appealing alternative.

Alex: Right, so you made these capsules. And how similar or different are the capsules from the kind of like folklore medicinal remedy out there of cranberry juice?

Manisha: So this is some of the challenge in the capsule literature and the capsule space in general. Capsules in the United States are not really regulated by the FDA. The FDA has some general guidance out there but there are manufactures that make products on the market that have all different combinations of what is in the capsule. Is it the actual full cranberry itself? Is it a component of the cranberry? And prior literature showed that 10 ounces of cranberry cocktail juice had 36 milligrams of proanthocyanidin, which is a type of tannin, or PAC for short.

So proanthocyanidin. P-A-C. So PAC was what is thought to be the important ingredient in cranberry juice, and it is thought to inhibit binding of e. coli to your epithelial cells or to bladder wall cells. So I used a product that specifically had 36 milligrams of PAC in one capsule. And the reason I did that was to try to mimic the juice trial that actually showed to be a benefit. Then based on a dosing study that I had done before this particular trial, it looked like we had a dose-dependent effect, where we looked at zero, one, two and three capsules, cranberry capsules with 36 milligrams of PAC in each one. And it looked like two capsules was the best dose to test. It seemed that we had more inhibition going on. It also seemed like that was the best dose that patients actually could take, and that's why we ended up testing the equivalent of 20 ounces of cranberry juice cocktail, so double what the 1994 study showed, or 72 milligrams of PAC.

Alex: This point you make about what, proanthocyanidin ... Say that five times fast. Proanthocyanidin. Proanthocyanidin. PAC, right? ... is that it inhibits binding of e. coli, which is the bacteria, most commonly, that causes UTIs. It inhibits the binding of that bacteria to the bladder wall. This is an important point that you bring up and I wonder whether that would affect bacterial replication within the bladder. In other words, does the bacteria need to bind to the bladder wall in order to proliferate and cause bacteria? Or is there something about the binding of the bacteria to the bladder wall that causes symptoms?

Manisha: Right, so I mean I think that's one of the challenges and nuances of this type of study. So to your point, this is supposed to inhibit binding, which is what is thought to then lead to an inflammatory response, more white blood cells, potentially then symptoms or what would potentially be an invasive cystitis or bladder infection. And so that's why binding has always been thought to be important in this whole pathway of UTI. The challenge in the study is what we did was look for whether the bacteria were present in the urine. So whether they were actually binding or not is difficult to tell, but certainly if they are present they could bind. And so that has always been a surrogate in all UTI research, is the presence or absence of these bacteria in the urine.

Eric: So just to restate what you did. This was a double blind, randomized, placebo-controlled study. So one group got placebo, the other group got these two oral cranberry capsules. They were nursing home patients. They were women. And they were English-speaking and all had to be 65 years and older. A whole bunch of nursing homes -21 different nursing homes near New Haven. What did you guys find?

Manisha: We screened over 5,000 patients in these 21 nursing homes. We enrolled 185 women and one of the biggest reasons that women were not able to be enrolled was because they just could not provide a clean-catch urine specimen. We were not allowed to catheterize patients to obtain urine specimens, because when you catheterize the patient, you could introduce an infection, and because these specimens were all collected when patients were asymptomatic, we couldn't justify that.

So we collected clean-catch specimens at baseline, and every two months, so a total of six other specimens, for the course of a year. And unfortunately, what we found was that the rate of bacteria plus pyuria in both groups ... in the control group and in the active cranberry capsule group ... was basically the same. So we controlled for a number of variables, but despite that, we were not able to show that over the course of a year there was any benefit.

Eric: You know, the adjusted results seemed like that one of the primary findings ... In a randomized control study, why the major focus on the adjusted results rather than just un-adjusted?

Manisha: It's interesting you ask that, because the un-adjusted results, which are also there in the supplement,that was actually what we wanted to present, because I think it's just intuitive for people to understand the un-adjusted results, which were also not significant. But in our statistical analysis plan, which was in the grant, in the protocol, all from the beginning, it was the adjusted results that were our primary outcome. And the reason that that's also important is that we took into account the level of incontinence, the amount of missing data that we had, so there were participants who could've provided one or two specimens, and they may have missed a specimen, then they may have provided another one, or any combination of that over the course of the entire study.

We also had people that dropped out because either they became hospice or died, or for other reasons decided they didn't want to take the capsules anymore. So to be able to account for all of that missing data, the adjusted analyses were important. What the adjusted analyses showed though was that it even brought the data more to the null.

Alex: You know, I want to ask also about the secondary outcomes that you looked at and specifically things like hospitalizations, gram negative bacteria, antibiotics for a suspected UTI, total anti- microbials. And if you just look at the numbers, yes, there are no statistical differences. But if you look at the percentages among treatment group for hospitalizations ... 40% rate per hundred person years versus the control group, 60%. Antibiotics for suspected UTI. 8% in the treatment group versus 11% in the control group.

Eric: You know, when we were talking about this in journal club it kind of struck us that there may be something here and that something may have more to do with symptomatic concerns that raise a level of hospitalization or antibiotic treatment, but we're just not ... We may not have the power to detect it or something along those lines. What are your thoughts about that?

Manisha: One of the reasons that we couldn't adjust for the secondary outcomes the same way that we did for the primary outcomes was because there was just a lot of variability in terms of the numbers of each of the different outcomes and each of those different categories that we looked at. And so there were a lot of confounders that actually ... looking at adjusted results would've been very deceptive. So what we presented were the raw numbers essentially, and the adjusted results.

And you're absolutely right. It looks like, well, could there have been something there? Is there something that we're not seeing? That's certainly possible, that if we had had a larger sample size, could that be the case? If you look at symptomatic UTIs alone, using a very strict definition, ten versus twelve symptomatic UTIs, we obviously didn't find any difference there. And that included people who were hospitalized or who were just treated in the nursing home alone. But I think that the secondary outcomes, although the numbers were in that direction, I just think that the level of co-morbid disease at baseline for these groups was different. And we couldn't do statistical comparisons there, just because there's too many different co-morbid conditions on which to compare.

Alex: I'm kind of bummed about these results. I was hoping that cranberries, cranberry juice, cranberry capsules, proantho blah blah blah, PAC, whatever it is, would be effective because this is ... It's practically harmless. It's easy to take. It's pretty cheap. It doesn't spread antimicrobial resistance. How did you feel when you unblinded these results?

Manisha: I had several emotions, which I will tell you about. So the first is ... Obviously I've spent probably about eight years of my life studying this, so certainly I was hoping for a positive result. I think that as you said, it's a relatively harmless intervention and I was hopeful that for an infection that is so hard to diagnose and leads to over-prescription of antibiotics, that this would be a simple intervention that maybe could make a difference in these patients' lives. So certainly I was disappointed.

Having said that, I think that the cranberry capsule industry you've talked about is relatively cheap. Capsules in the free marketplace, or if you look at, let's say, a month's supply could be anywhere from something like six, seven, eight dollars, up to 200 dollars a month. And a lot of that has to with what is actually put in those capsules. Half the time I don't think consumers really know what's in them because they can market things without it having to be validated in a way that medications have to be. And so I think that consumers are a little bit victimized, I believe. And so I have had multiple patients, from people who have emailed me, who've given me anecdotal advice, and their own experiences, and there are people who feel strongly that they work for them. That whatever brand of product that they use really works for them. If they start taking it before getting a UTI or when the symptoms first start or something along those lines, that the capsules really work for them.

I think that ... My fundamental feeling is that cranberry products have been used and were used by Native Americans for thousands of years. When the pilgrims and first settlers came to the United Sates, they learned how to use the cranberry, which was one of the few fruits native to North America. They learned how to use it for a number of purposes, whether it be to prevent scurvy, whether it be to barter with Europe, and whether it be to prevent or treat urinary tract specific symptoms.

So I think that there are many women who will say that if they get symptoms of a UTI, if they start drinking cranberry juice, it will alleviate the symptoms. And so I have to believe that there's some anti-inflammatory effect or something that we have not identified in studies when we're looking at how much bacteria is in the urine. That's what most of the end points for most of the studies have been out there. If we look at that end point, most of the data does not suggest it works. But if we look at anecdotal information about what women say helps them, it seems that cranberry juice may prevent some of the burning that comes with the UTI.

Eric: So I got a question. I've never heard of Big Cranberry before but I saw a press release from the Cranberry Institute that took ... What's the right word?

Alex: Took issue? Took umbrage?

Eric: Yeah.

Manisha: Yes, I think would be fair.

Eric: I saw a press release from the Cranberry Institute that took issue with this study, and especially with the accompanying editorial, which basically said it's time to move on from cranberries for preventing urinary tract infections.

Manisha: That's correct.

Eric: Your thoughts or response to that?

Manisha: So I have to say that given that this was a negative trial, I did not anticipate so much interest in this trial. I thought that there might've been more interest if there was a positive study, but I think the concept of debunking a myth was interesting to many people in the lay press and was very disturbing to people in the cranberry industry. In terms of moving on from cranberries, I think it's fair to say that what we tested in our trial was cranberry capsules with a very high PAC content in nursing home women. And I think in my opinion, it is fair to say it's time to move on from cranberry in that population.

Eric: What do you think about the idea that this study did not test it in the right population, not those individuals with recurrent UTIs, but just women living in nursing homes who are older?

Manisha: Yeah, so I tried to do that in the dosing study that I did. What I did was, I said only if you have a history of UTI and I defined that very loosely and broadly, which was ... If you had documentation of you were treated for UTI in the last year, only then could you be enrolled in the study. And it's very interesting. People who have done research, a lot of people have found this. The minute you start studying a disease, it goes away. It's the best way for an illness to be cured is just to study it. So enrolling people with a history of UTI was virtually impossible. Now look at what we did in our study. We screened over 5,000 women and we didn't even make history of UTI a requirement. I should correct myself, not 5,000 women, but over 5,000 nursing home residents. Some of those were men, so they were excluded because they were men.

So again, what we were looking at was asymptomatic bacteria. That's really what we were looking at. That was our primary outcome. So it would've taken hundreds of nursing homes throughout the United States, for a much longer period of time probably, to be able to test that specific question.

I think that that question has been tested in younger populations, in other age groups of women, and I do think that the vast majority of literature that's out there using either juice or capsules ... The really good, well-done studies ... has more pointed in the direction of "it doesn't work." I think that one of the trials done in the last five years or so looked at a placebo drink and a cranberry juice cocktail drink and the rate of UTI went down in both arms, which would again suggest that hydration was a major factor. That just by hydrating, that is enough to drive down the rate of UTI in this population.

So I think that my study in and of itself, I don't think gives enough information in terms of moving on from cranberries. I do think that there are a lot of other studies though that have already suggested that in other populations.

Eric: Was bacteria plus pyuria the right outcome to look at?

Manisha: The 1994 study, that was the outcome they looked at. And that was the main study that really sent the cranberry industry off in terms of success for UTI prevention. And so one of the thoughts I have was that if we didn't use the exact same outcome that they used and had a positive result, we'd be critiqued for the fact that we had the wrong outcome. So I think that it is a challenge. I think symptomatic UTI would've been the ideal outcome, but the problem is that they're so few and far between that it would've required thousands of patients. So I think it's the best surrogate we have in a population that's very difficult to diagnose UTIs to begin with.

Alex: Great. All right, last question here. What cranberry product, if any, do you have at Thanksgiving?

Manisha: Well I like a bunch of different cranberry products, but I like syrups and sauces and things like that. But I'm open to all kinds of cranberry ... I like dried cranberries in salads. I like cranberry juice cocktail personally. I like cranberry juice in with selzer so. I'll try a number of different things. Whatever's available.

Alex: Eric? Do you ...

Eric: I got a question. Can I continue to eat Craisins?

Manisha: Absolutely! I love Craisins! I mean ...

Alex: Craisins are great, but you know, there's a ton of sugar in them.

Manisha: I tell people all the time, "You should eat ..." I mean see one of the things about the juice and dried cranberries and craisins, things like that, is that you at least enjoy them in the process. The thing about the capsules is there's really not much enjoyment. I mean, the reason you're taking them for a presumed health benefit. So that's my main dissatisfaction with it, and disappointment with it quite frankly. I wanted it to work.

Alex: Yeah, our Thanksgiving tradition is that my mom would open up a can of cranberries, canned cranberries ...

Eric: Ooh, and as it turns around and comes down as one solid ...

Alex: One solid gel mass that then gets sliced into little round circles. That is our Thanksgiving tradition. Cranberry in a can.

Manisha: Once a year.

Eric: Thank you very much for joining us today.

Alex: Thank you so much Manisha. This was treat.

Manisha: Thanks for having me.

Eric: So Alex, do you want to end this with maybe a song about cranberries?

Alex: Sure, so this a song by The Cranberries.

Eric: Ah, I should've known!

Alex: Right, so I think this is called “Linger”. I am unable to sing like The Cranberries. Let's just be clear. But I got a little bit of the chorus.

Alex plays “Linger” by The Cranberries.
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Tuesday, November 22, 2016

Palliative Care as the Standard of Care for Stem Cell Transplants

Today was a big day for palliative care.  Really big.  Why?   Because today we have the strongest evidence to date that integrating specialized palliative care into usual care not only helps those individuals with life-liming diseases like metastatic lung cancer, but also those undergoing potentially curative therapies.

In todays JAMA, El-Jawahri and colleagues describe a single-center randomized clinical trial of 160 adults hospitalized for hematopoietic stem cell transplantation.   These individuals either received specialist palliative care integrated along with usual transplant care or just usual transplant care.  Those assigned to palliative were seen by palliative care clinicians at least twice per week during hospitalization, with the focus primarily on addressing physical and psychological symptoms.

The usual course of stem cell transplant is one that includes worsened quality of life, increased symptom burden, and worsening mood, all of which were seen in the usual care group over the course of 2 weeks.  However, those assigned to palliative care had a smaller decrease in quality of life from baseline to week 2 compared with the usual care group.  These patients also had less depression, anxiety, and symptom burden during this time.  What is also impressive is that caregivers of patients receiving palliative care had a lower increase in mean depression scores in the first two weeks (although no significant change in quality of life).

Three months after the stem cell transplant, patients in the palliative care group had higher quality of life scores and less depression symptoms than those assigned to usual care, although there was no significant differences in anxiety, fatigue, or symptom burden.

To turn these results into a change in clinical practice is going to take a fair amount of leg work.  As I mentioned in an editorial the I co-wrote with Preeti Melani, the current state of palliative care integration in the care of stem cell transplant patients is pretty much summed up with the finding that only two individuals in the control group received formal consultation despite a protocol that allowed patients, caregivers, or transplant clinicians to request palliative care involvement.   This argues that having palliative care just available for consultation may not be enough, rather we should be striving to make it a normal part of the stem cell transplant standard of care.

by: Eric Widera (@ewidera)

Here are the links to the palliative care articles published in this weeks JAMA, which includes a systematic review on palliative care:

Read more »

Saturday, November 19, 2016

Hallelujah: Integrating Primary Palliative Care In The ICU

There are a lot of ways one can imagine on how to integrate palliative care into the intensive care unit (ICU).   Some of these ideas don't work so well, like in a recent JAMA article that we discussed in a GeriPal post titled "Fast food-style palliative care consults found inneffective, may cause PTSD."   

In todays GeriPal podcast, we talk with ICU doctor and researcher, Bill Ehlenback, about some ways that may work, including a discussion of his recent study looking at a proactive palliative care rounding intervention.   Along the way, Alex takes us on trivia journey celebrating the work of Leonard Cohen.

For those who want a little deeper dive, here are some of the articles we discussed in the podcast:

by: Eric Widera (@ewidera)


GeriPal Podcasts can be found on:

Transcript of the Podcast:

Eric: Welcome to the GeriPal PodCast. This is Eric Widera.

Alex: And this is Alex Smith.

Eric: And Alex, we have a special guest on the line, don't we?

Alex: We do. We have a special guest. This is ... Wait, hold on. I was just thinking like is it, "ee-len-bach", "ellen-bach"?

Eric: Oh, yeah. I think, good question. So, the phonetic, I'd say "think of beer". So, "ale-in-bach". Ehlenback.

Alex: We have Bill Ehlenback, who's an assistant professor of medicine at the University of Wisconsin. He's a pulmonary and ICU critical care physician. He's interested in conducting research and outcomes after critical illness in older adults. Also interested in palliative care. I had the joy of getting to know Bill a little bit better at the recent Beeson Geriatrics Research Scholar meeting outside of Chicago and we had a great night not just learning about research, but also singing around a fire-pit until about one thirty in the morning.

Eric: So Bill I'm going to turn it over to you. We usually start off with a song. Do you have any requests for Alex?

Bill: You know, I think it would be timely if we could hear perhaps something from Leonard Cohen.

Eric: And in no way did we set Bill up to give us that answer.

Alex: No, we wouldn't do that.

Bill: Totally spontaneous.

Eric: So, Alex. A little Leonard Cohen.

Alex Plays "Hallelujah" by Leonard Cohen.Well I heard there was a secret cord that David played and it pleased the Lord, but you don't really care for music do you? Well it goes like this, the fourth of fifth, the minor fall, the major lift. The baffled King composing Hallelujah. Hallelujah. Hallelujah. Hallelujah. Hallelujah.

Well, Leonard Cohen. It's sad. He died last week. What an incredible songwriter. Couple interesting things I learned about Leonard Cohen recently through reading quite a bit online about him. Did you know that he died of a fall?

Bill: The geriatric syndrome right there.

Alex: He was 82 years old and he died of a fall, and died in the middle of the night. Another thing I learned recently is ... I listened to a podcast by Malcolm Gladwell called, his podcast called, "Revisionist History," and he had a segment called Hallelujah. And in that segment, he talked about how this song, "Hallelujah" by Leonard Cohen didn't just come out on paper as a great song, like many of, say, Bob Dylan's songs did. Leonard Cohen took five years to write this song, and he just kept reworking and reworking it. Even after he finished it and started performing it, he didn't quite get it right. It took years for it to get right. Actually was picked up and reworked by a guy from the Velvet Underground, and released on an obscure album that somebody in New York City happened to buy, and the house sitter for that person happened to play this album while he was house sitting. Do you know who that was? That was Jeff Buckley.

Eric: Ah, Jeff Buckley.

Bill: I was going to guess Jeff Buckley, that's how I first heard the song.

Alex: Yes, and so Jeff Buckley later played the song in a bar, and a Columbia Music executive heard him play and decided to sign him. Jeff Buckley played the song on his album "Grace." Amazing interpretation of the song.

Bill: Oh yeah.

Alex: And yet it still didn't catch fire. It wasn't until Jeff Buckley died around 1997 that people really started listening to his music, and they realized, this is an amazing song. And since then, it's been reinterpreted about 100 times, but it's this history of how some great works don't come out fully formed the first time. And some people, like Leonard Cohen, had to rework, rework, rework, as opposed to Bob Dylan, recent Nobel Laureate, who just has a vision and a dream, puts it down on paper and it's perfect the first time.

Eric: That's almost a good transition into our topic today. Because having done palliative care now for a little over a decade and trying to figure out how to integrate palliative care into the ICU, it feels like we've gone through a lot of revisions.

Alex: How are you going to work that in?

Bill: Nice. That's quite a segway.

Eric: Do you like that?

Alex: It's a good segway. I like that.

Eric: I just thought of that. There's been several recent public about integrative palliative care in the ICU.

Alex: Yeah, there was that study that we wrote about on GeriPal, "In N Out Palliative Care".

Eric: Yeah, recent JAMA study on critically ill ICU patients, where the protocol that they used, which included a palliative care physician doing informational sessions, it had no improvement in their primary outcomes. And there was a suggestion of increased PTSD symptoms.

Alex: I think so. There is a lot of controversy about that article. I'm sure you've read that one, Bill, and have some thoughts. But before we get to that, maybe we should talk about this article that you published. This is in Intensive Care Medicine and we'll put the link below after the post. The title is, "Perspective Study of Proactive Palliative Care Rounding Intervention in a Medical ICU". Bill do you want to tell us a little about what you did?

Bill: We sort of came at this project thinking about what kind of change could we make to practice that really is about the delivery about primary palliative care. So what kind of intervention could we think about that might get critical care doctors themselves to think about the palliative care needs of their patience, and perhaps think about them a little bit earlier.

We also thought about making, you know, creating an intervention that would be seen as non-threatening, if that makes sense? So, I think there is a occasionally and I think historically much more so, the potential for culture clash that you have groups of docs in the ICU and they see palliative care names, or physicians, or you know, other conditions as somehow being outside of the ICU.

So our intervention that we studied in a before and after implementation design, was essentially to prospectively identify patients at high risk for death, or imperative recovery, or high risk of having one that palliative care needs. And for those patients, during our intervention time frame, we had a very experienced palliative care nurse, simply interfaced with the critical care medicine team during their large, often slow disciplinary rounds in the morning.

Eric: I've been through a lot of different ICU rounds. The universal theme in the academic med center is usually they take three to four hours in length-

Bill: Yeah. Yeah.

Eric: And there's a lot of teaching going on. There's a lot of discussion. And sometimes for consultants it may not be the most efficient use of their resources just to hang out with the team for three to four hours. Was that an issue?

Bill: Absolutely. I think that is a very real challenge. You know, for this study, there really was collaboration, there really was partnership among a lot of different people and groups of people, and in particular we have the support of, you know, a very robust palliative care service who was ... And the individual nurse who really played the role of the intervention in the study, they have the ability and the willingness to essentially, during the six month intervention time frame, she spent the vast majority of her time in our main 24 bed ICU.

Eric: So what did the palliative care nurse actually do during this intervention?

Bill: Great question. So we review charts every morning. Myself, and some research staff. And so we would essentially contact her every morning during the intervention and say, "these patients in these beds met this inclusion criteria". So on day one, after we identified those patients, she would interface with the critical care team on rounds, and she would tell them, "I'm here because this patient met this trigger criteria." On the first day, that was essentially it. So she would listen to rounds. She often gets some additional information from the bedside critical care nurse. However, she did not interact with patients or families. So really it was an intervention aimed at increasing her communication with the critical care team. So, day one it was essentially, "I'm rounding with you on this patient because of this reason."

And on subsequent days, she might make a suggestion, like the nurse told her that, “the family has some concerns about this issue.” She would make observations on day four, five, or six, “[This patient] has been here for five days, have you guys thought about a family meeting?” She did not as a matter of course participate in family meetings. And I think one of the differences between this intervention and some prior interventions that have been published is that this did not have trigger criteria leading to a full palliative care consult, and in fact the number of palliative care consults requested, or the proportion requested, did not differ at all from the pre to the intervention time period.

But just that pretty simply intervention of the palliative care nurse on rounds, occasionally voicing some of these, you know, significant issues, particularly around family meetings, did prompt the team to hold family meetings much more frequently. Number of family meetings increased 60%. And for those patients where a documented family meeting happened, it happened the time from ICU admission to the meeting was 40% shorter during the intervention time period.

Alex: Wow. That's interesting. So just having the palliative care specialist there rounding with the team, not fishing for consults as we sometimes do, led to more family meetings, and family meetings that occurred earlier in the course of the critical care stay. And did you look at outcomes for these patients in the ICU?

Bill: I mean, we did see a significant reduction in total hospital length of stay. And when we looked at just the patients who ending up dying in the hospital, so the patients who did not survive to discharge, there was a significant reduction in hospital and ICU length of stay. You know, which we interpreted as saying that this intervention did seem to move decision making up front in a sense. We did not see differences in mortality rate. I don't think this changed the decisions that were being made. I do think that it likely changed the time frame around decision making, or around defining or perhaps changing the goals of care.

Eric: It sounded like you guys created a practical intervention that could potentially be sustained. And improvements and some significant outcomes including length of stay in the ICU. Are you guys still doing it after the 6 months?

Bill: Yeah, see that's a great question. This is a pretty substantial time commitment of a professional on the palliative care team, really that means it’s a pretty substantial resource commitment. So one thing that we explored or thought about was, are there other ways of moving family meetings a little bit earlier in the stay? And so one change that we made right off the bat, was we actually developed a process, a protocol, by which our health unit clerks start the process of scheduling meetings essentially automatically. So instead of waiting for some member of the critical care team to start the process with the family, and the nurse, and the social work, and the unit clerk of trying to find a time and coordinate a meeting, we sort of turned that on its head a little bit. So the expectation is that, unless somebody is expected to have a really short stay, our goal as a unit is to have high quality sit down interdisciplinary family meetings by the third day.

Eric: Interesting. So you changed the norm?

Bill: Yeah.

Eric: So the expectation is a family meeting. Yeah.

Bill: The other thing we did, which is actually kind of exciting. Because of what we had found in this study, and because of what Randy Curtis and his group out of Seattle showed with the randomized trial of a communication facilitator ... We, and by we I mean myself and Toby Campbell, the head of our palliative care group, and Anna Moore, who's the manager of nursing in our intensive care unit, made a case to our hospital administration to say, "here is a novel, evidence based intervention that can have some really palpable benefits in patient care by reducing non-beneficial or loss-beneficial care." And so we actually just hired, and obviously it was relatively long process of getting approval and listing positions, but we just hired two full-time nurse communication coordinators for the four-bed ICU. So these are experienced critical care nurses who are currently undergoing pretty prolonged, and I think relatively intensive, communications skills training, some palliative care training coordinated by, again, this multi-disciplinary group.

Eric: And what do these nurses do actually? Are they trainers, or do they...

Bill: Some of the details of implantation I think are going to evolve. But the idea is that ... And I'll also mention we did measure, in our study, we did measure family outcomes, including depressive and PTSD symptoms as well as family rating of the quality of death and dying for patients who died. And we did not see any significant differences. We saw a signal of reduced PTSD symptoms from family, but it was not statistically significant. And one of the way we interpreted that, is that our intervention I think did move, communication did move, family meetings up, but I don't think it necessarily had any impact on the meetings themselves. And I think we know from the literature, and I think anecdotally in practice, there is just a lot of variability of how family meetings are carried out in the intensive care unit. And I think as the evidence basis evolved, I think we can say that there is variability in quality. You know, I think we can objectively say that these meetings should include discussions of prognoses beyond mere short term survival. But these meetings should have discussion of patients’ values, and preferences in the context in which they live their lives.

And so, essentially these nurse communicators are going not only play a role in planning, timing and setting up family meetings, but they're actually going to have a role within the family meetings. I think the vast majority of our meetings in the ICU are still going to be led by members of the critical care team, whether the attending, the fellow, the nurse practitioner.

But we're hoping to develop a culture, and really support the skill development of these nurse communicators so they can also play a vocal role in these meetings. For example, one of the things I think about is if there is a family meeting taking place and there's a lot of very detail discussion of the medical facts ... Maybe it's me. I've automatically and accidentally I've switched into pathophysiologic lecture mode-

Eric: Right.

Bill: And the family is getting the blank look on their face.

Eric: I've never seen that happen before.

Bill: No, right? It's totally ... It's hard to believe, right, that it could ever happen?

But, our vision is that April or Andrew, these are the individuals who have taken these new roles, will be empowered to say, "you know, maybe we can step back and see what the family's understanding of everything is. Or perhaps this might be a good time to hear about our patient as a person, or what she might tell us about what's going on."

Eric: I got a controversial question for you. A lot of what you're doing sounds like it's improving primary palliative care skills of ICU, integrating primary palliative care ... Is there a role, still, for interdisciplinary palliative care consultations in the ICU?

Bill: Yeah, and I would say absolutely. And I also want to acknowledge, you said it's a controversial question. I think even among the critical care docs who do research in this area, or who are very interested in this area, I do think there's still a lot of diversity of opinion about how much palliative care in the ICU should be primary palliative care delivered by the ICU team and how much of it really should be delivered by a palliative care specialist.

Personally, I think ... There's a couple ways that I think about it. One, I think if all high risk patients required a palliative care consult, if I think about it on a population level, national level, even just thinking about every large hospital, every academic hospital, I do think there's sort of practical limitations to what could be achieved certainly today, but perhaps even in the future, I don't know. But I think there is a practical consideration. Personally, I think that there is absolutely a role ... In my own practice, I try to deliver high quality primary palliative care, but there are absolutely situations where I feel like I need help. I need an expert, I need someone who does this all the time. And so, it's still a huge service to be practicing in a hospital, practicing in an ICU, where you have that support of expert palliative care providers. And I don't know what the ideal split would be. Is it 80% primary palliative care by intensivists? Is it 20% consultant involvement? I don't know how that breaks down in any given ICU, but I do think that's still an absolutely needed service.

Alex: If you had to give one suggestion to our listeners based on this research that you've done, so they can change their practice in the ICU, I guess, what would that be?

Bill: Yeah, I don't think there ... I think the state of the evidence are it exists right now, thinking about the article that we published, and really all the literature that I'm aware of, I don't know that we can say that there is one model, that is the best model, that should implemented in every ICU. What I would say is, and I think the work that we've done, I think that it demonstrates that this is one way to improve the way we deliver palliative care in the ICU. I think in critical medicine, we are at the point where the culture has changed. I think we all agree, or we just about all agree, about the incredible critical importance of the palliative care needs of our patients and their families. But even as we have these professional societies, and the guidelines, and the very strongly worded, "you should meet these needs," I think in reality we're not doing a great job in many or most of our ICU's. So the take home I would recommend is to think about your own ICU, think about your own unit, and really evaluate how well you are doing this. And one easy metric, I think, kind of as a first step, is really to say, "How are we doing with family meetings? How early are they happening?" And I think I would advocate also trying to confront the question of, "What is communication? What does a family meeting mean?" Because I think there is still some disagreement about the role of standing at the bedside at rounds, and giving the family an update, and I do think there's some intensivists who sort of think as that being analogous to a family meeting, where I think that it’s actually very very different.

So I think I would say there's not one solution for every ICU. But I think we are at the point where this is an important realm for quality improvement, and thinking about, are we having family meetings, are we holding them early? And if not, drawing from the literature to look at I think the variety of interventions that may have value, may be effective.

Alex: That's perfect.

Eric: Bill, thanks for that excellent discussion. Alex, do you have any other fun facts for us?

Alex: So one other fun fact about Leonard Cohen and this song Hallelujah. A couple months ago I was reading an article in New York Times about how Hallelujah was overplayed. And that if you look at any major T. V. show there's some episode that incorporates the song, Hallelujah. And they actually linked to all these YouTube clips from these different series, you know, The West Wing, et cetera. Leonard Cohen asked for moratorium on Hallelujah.

Eric: Really?

Alex: Actually toward the end of his life.

Eric: So that's why I never heard of it on Game of Thrones?

Alex: Yeah, right. It'll be in the next season. But despite that, we'll play it one more time in honor of Leonard Cohen. One more verse.

Alex Plays "Hallelujah" by Leonard Cohen.
But baby I've been here before. I've seen this room and I've walked this floor. You know I used to live alone before I knew you. And I've seen your flag on the marble arch, but love is not a victory march. It’s a cold and broken Hallelujah. Hallelujah. Hallelujah. Hallelujah. Hallelujah.

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Friday, November 11, 2016

Honoring Veterans

This Veterans' Day, stop and think about the World War II Veteran. The average veteran of WWII is now over 85 years old.  Currently 500 WWII veterans die every day. The "Greatest Generation" is in need of geriatric palliative care.

The next WWII veteran that you care for, ask them if they have been on an Honor Flight. If you have not heard about Honor Flights, read more about this amazing program here.  I once had the pleasure to see an Honor Flight arrive to Reagan National Airport (DCA) and the entire airport stood in applause.  It was truly moving as the leader of the group asked the terminal to cheer for these heroes.

The Honor Flight takes veterans and flies them (with medical volunteer support) to DC to see the WWII memorial on the mall (the program has expanded to Korean and Vietnam Wars' veterans as well.)  The WW II memorial was not completed until 2004, and by the time it was finally dedicated, many veterans who had waited for decades hoping to travel to the monument were too sick to make a long drive.  Earl Morse, a physician assistant and retired Captain and pilot with a group of 12 other pilots flew a group of veterans to DC, and in 2005 the Honor Flight was born. By 2012 the program had transported over 98,500 veterans to DC and the program has 127 hubs in 41 states and 20,000 veterans flew in 2015. Flights are accompanied by medical personal and assistants and other volunteers and no veteran is ever charged for the experience.

I can testify to just how important the Honor Flight can be.  So many WWII veterans returned home after the war and never discussed the difficulties they experienced. Many families decribe how "Dad was different after returning from the Honor Flight, as if a weight was lifted from his chest." One patient had been so looking forward to the flight which was the last thing on his "bucket list."  He died within days of his return, happy. The advice of one veteran to another was "Don't wait, go as quickly as you can."

But what do you do for the frail aging veteran for whom even an air trip would be too hard?  This is where the promise of technology can really make a difference. Honor Everywhere uses virtual reality technology to bring the frail veteran on a virtual trip to DC.  Instead of attempting a long arduous journey, the Honor Flight experience is brought to the veteran in his or her own home, or assisted living or nursing home. The veteran  is (virtually) greeted by cheering crowds at the airport as the Honor Flight arrives to DC, and then experiences a trip to the Iwo Jima Memorial, Arlington National Cemetery, and finally the World War II Monument. Watch the video. The veteran can feel like he has traveled, without ever leaving home or the bed.

If you care for terminally ill veterans, ask them if the Honor Flight would be important for them.  If it is and they are too frail to go, think about setting up an Honor Everywhere virtual visit.

This makes a difference!

by: Paul Tatum

Photo credits: of the Central Missouri Honor Flight 2012 at the World War II monument and second photo is from the Honor Everywhere website video of the virtual experience.
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Wednesday, November 2, 2016

Sweet Little Lies: Is it Ever Ok to Lie to Our Patients?

Truth telling is an ethical pillar of medicine. But, are there instances when it is ever ok to lie to a patient?  In this episode of the GeriPal podcast we explore the use of deception and lies in modern healthcare, from those sweet little “therapeutic lies” commonly used in dementia care to withholding a diagnosis like terminal cancer.

While we don't pretend to know all the answers, we do have some wonderful resources that have helped shape our thoughts on the use of lies and deception in medicine:

by: Eric Widera (@ewidera)


GeriPal Podcasts can be found on:

Transcript of the Podcast:

Eric: Welcome to the GeriPal podcast, this is Eric Widera.

Alex: This is Alex Smith.

Eric: Before we start, Alex, do you want to give us a little song?

Alex: Yes, this is an appropriate song given the topic of today. "Tell Me Lies" or "Little Lies" I think it's called.

Alex plays “Little Lies” by Fleetwood Mac.
"Tell me lies, tell me sweet little lies, tell me lies. Oh no, no, you can't disguise, you can't disguise. Tell me lies, tell me sweet little lies."

Alex: The topic today is "Sweet Little Lies." Eric, is it ever appropriate to lie to a patient?

Eric: I remember being taught in med school that no, the fundamental principle is medicine is trust and the trust that we build with our patients and their family members. Lying is bad.

Alex: Lying is bad. Is it really so black and white? Maybe we need somebody else to help us think through us. I'd like to introduce Kathryn Eubank, who is here at UCSF and is the Ethics Steward. She has some experience that she's going to share with us, not just clinical experience but also we're going to rely on her ethics background as we talk about this issue of whether it's ever appropriate to lie to our patients. Welcome, Kathryn.

Kathryn: Thank you. Thanks for having me.

Eric: Is it ever okay to lie to our patients?

Kathryn: No, I think Eric is right. We're taught from very early on in medical school that the basis of our relationship with our patients is trust and absolute truth-telling. I think we may have all used… is it lying?... definitely falsehoods, or little white lies at times with our patients.

Eric: Sweet little lies.

Kathryn: Maybe sweet little lies. We have had some cases where we do this specifically with patients who may not understand that they're being lied to. I think it's probably most often used in pediatrics and dementia care with older adults.

Alex: Let's start with one end of the spectrum because I think there is a spectrum here about lying in those. Some of these are sweet lies, or I think what we sometimes call therapeutic fibbing, therapeutic fibs. Then the other end are things that are really nefarious, intended-to-harm lies. There's a spectrum in between. Maybe we could start with talking about some things on one end of the spectrum that are the sweet little lies, variety.

Eric: What would be an example of a therapeutic lie?

Alex: What about those black mats that we have that we've seen in nursing homes? They're actually tiles that are black, outside of the elevator.

Eric: I've seen those.

Alex: What's the idea there?

Eric: I think they are to prevent people with dementia from crossing it because they fear it's a cliff. People often put them in front of elevators or doors going to stairs, because it's supposed to create some type of fear that they're approaching a cliff, so they back off and wander somewhere else.

Alex: What do you think about those, Kathryn? Ethically are those acceptable?

Kathryn: Yeah, that would definitely fall in the realm of what we would call deception. I think what we're intending there is that we believe that we're acting in the patient's best interest by preventing other things that we may not fee are as beneficial for the patient. If we don't block them from going on the elevator, then what happens?

Eric: They wander outside and they may get hit by a bus or ...

Kathryn: Yeah. Then we might have other ways to block them from going on the elevator. Most we would not choose to have, either restraining a patient, tying them down, or giving them medications to do that. I guess we would say, if you're going to weigh out risk and benefit, maybe that's the lower risk, the lesser of the 2 evils.

Alex: What we choose for our patients, sometimes we're choosing the deceptive method as the least restrictive method or the least potentially harmful method for the patient.

Eric: Is that a lie or is that something less than a lie?

Kathryn: Well, it's absolutely deception. There's no question that we plan to deceive when we lay out those black tiles for the patient.

Eric: Well, what's the difference between a lie and deception then?

Kathryn: I think some people would say a lie is something that's verbal, spoken or written in some way, whereas deception is much broader than that. A lie can be deception, but deception would encompass more than that. Deception is even me withholding something from you, the thing that I don't tell you.

Alex: Other examples of this. What about just common, every day that seem to be more accepted. When we mix medicines and apple sauce and give them to patients with dementia, that is deceiving them because we're not telling them that there's medicines in here. The idea is to get their medicines into them mixed in a substance that they want to eat, is it?

Kathryn: Seems benign, but here's what I think is interesting. If that was a younger person with a mental disorder, we could not do that without either some type of informed consent from a guardian if they were present, or we have to go to court before we can force medications on them.

Somehow we're very paternalistic to these older adults who we think have this almost childlike demeanor and that we're going to hide their meds in their apple sauce, and we don't ask necessarily permission to do that. We're making that unilateral decision to do it.

Eric: I'm going to turn it up just a notch, then. We had a patient who, he was in his 60s, with a metastatic cancer to the brain, he's got a big lesion right next to the hippocampus, couldn't remember anything past 5 minutes, so you'd have a discussion with him about his cancer, and 5 minutes later he would completely forget.

He was undergoing radiation therapy. Every morning the intern had to go talk to him about why he had to go and wake up from his sleep, get ready to go to the radiation treatment center to get this lesion treated. Every time it was an emotional catastrophe for him. It was the first time that he found out that he had cancer, and at some point people were questioning, "What are we doing to him? Should we not tell him he has cancer?"

I guess that's again, more deception than lie at that point, or potentially coming up with a therapeutic fib of where he's actually going.

Kathryn: I think that some of the same principles would apply that we use with other patients. Is there somebody that you could check with before you deceived him?

Eric: He had no family, but good point, could have asked a family member.

Alex: Interesting. There might be something about going to family members to obtain permission to lie to loved ones with dementia, or in this case cancer affecting the brain. Well, I guess the other thing that I was taught, we lamented how even 10 years before our training doctors would routinely not tell people about their cancer diagnosis.

Oftentimes it was a family member who said that they shouldn't be told because it would be too hard for them to hear. In that case you'd have somebody who we have reviewed it with a family member, the family member said, "Don't tell them." Should we not tell them? What's different?

Kathryn: Time is different. I mean, honestly, that was an accepted thought at some point. I do wonder about that with these dementia patients, if we'll look back at this 20 years later and say, "What were we doing, thinking that it was okay to lie to these patients."

Alex: The norms have changed over time and what was acceptable then is no longer acceptable. Some of these sweet little lies that we partake in now may no longer be acceptable normatively in 20 years. What about these, sometimes the lie or the deception brings the surroundings into that patient's world view.

What I mean by this is, for example, in Europe there are some nursing home residences, long-term care facilities, where they recreate an environment that existed 20, 30, 40, 50 years ago because those are the memories that people with dementia retain. That's entering into their world view in a way. They might have things like a bus stop, an old-time bus stop that they go stand at.

There's no bus that's ever going to come. We're deceiving them, but they feel like they're acting out their daily lives as they are experiencing them in the world as they see it, which is the world of 50 years ago.

Eric: Yeah, or some of the dementia villages where they have full grocery stores, bus stops, big open gardens, but it's all enclosed so you can't leave. It's somewhat real, but it's somewhat like the Truman show, where everybody is in on it that this is all fake.

Kathryn: Is it fake? We have cases where we're definitely doing fake things with patients with dementia. We have a patient that needs to go pay his rent, so we set up a false landlord for him where he can take his play money up to the fake landlord in the hospital and pay his rent. That is a very fake situation. There's nothing real about that, but the dementia villages are not fake.

If you're going to the grocery store, they're picking up their coffee and their bread, or if they're going to the hairdresser, they really get their hair dressed. It's not a fake hair-dressing. Is it truly artificial or not? Is that the same level of lying as me completely playing make-believe like I would with my 4-year-old nephew or niece?

Alex: This gets at an underlying issue about treating older adults as younger children, which has already come up a couple times today. The other article that's been in the news recently is about doll therapy, for patients with dementia, where they give them a doll. The people with dementia hold it and cuddle it.

It's not clear if they're treating it as a doll or whether they're treating it as a baby and they can't quite tell that it's a doll because they're life-like dolls. In any case the issue is, are we treating them as children who play with dolls and not as older adults deserving of respect and esteem?

Kathryn: How does that compare? We know that for pet therapy, and we have plenty of research on pet therapy that that definitely can calm patients, that they find it comforting. They can form a relationship with that cat or puppy that wanders in the nursing home. There are even those studies that show that those animals are sensitive to that patient's needs. On days they're having a rough day they may spend more time on that person's bed.

Are we using the baby doll because it's cheaper and easier for us than the pet, which is somewhat less respectful to that patient than the ability to form a real relationship with an animal.

Eric: We don't have answers to these questions yet, but maybe ... We've talked about some of the considerations. One of the considerations is, would family approve or this, or a patient's loved ones, surrogate decision makers? Another consideration is what are the alternatives? One of the things that might be helpful as we think about this is to push the envelope even more, ratchet up another notch.

We had a situation at one of our hospitals where a patient with dementia was given a letter by some well-meaning providers, and this letter was addressed from an organization that this patient had worked for previously. The letter was encouraging that patient to make the transition from the hospital to the long-term care facility. It didn't work out so well, did it?

Kathryn: No, unfortunately, the patient realized that they had not worked for that organization for some time. Even though it was very well-intentioned, which was to make this transition easier so that the patient could adjust to it much easier than, for instance, their transition into the hospital, it actually ended up creating a lot of confusion both for the patient, because they were confused of why this organization would send them a letter 20 years after they knew they didn't work for them anymore.

Then also for the staff who weren't sure what to do. Once the patient realized the deception, do you double down on the deception and try to convince them that it's real, or do you back off? Then what have you done with that trust with the patient if you say, "We're sorry, it's not real."

Eric: I guess that's the problem with deception and lies is you run the risk of destroying any trust that's built up between healthcare providers and patients if the deception fails.

Alex: Right. If you're caught in the lie it doesn't look so good for the healthcare provider and can erode that trust. The other important piece that you bring out here is that the deception may have a pernicious quality in that it erodes the values of the healthcare providers who are trying to do their best in a difficult situation, so that over time they might feel uncomfortable lying and participating in this deception, or it may make it easier for them to deceive other patients.

Kathryn: Well, you're teaching them to stop listening to that inner voice that says, "We shouldn't go there." It gets duller and duller and duller over time if you ignore that thing that says, “this is not the right thing to do.”

Eric: Right, it may erode their integrity and their honesty, and that may compromise their ability to be the best physicians or whatever kind of healthcare providers they are.

Kathryn: If I deceive [a patient] in this situation because I think I'm really, honestly I'm doing this in the best interest of the patient, then why can't I not tell the guy he has cancer if I think it's going to be stressful to him? I can make him have a good life till the end, without ever telling him he had cancer.

Eric: Then the question is, because I feel like after listening to this conversation that there are these small little lies, therapeutic fibs, individual with severe dementia who thinks his wife is still around but she died 10 years ago. Where not every day you want to remind them that the love of their life is dead, where there may be a role in participating in this therapeutic fib versus going down all the way to the other side where it feels very uncomfortable where there are some lies that go too far.

Not telling the patient that they have metastatic cancer or are dying because one of their family members wants to protect them. Where do we draw this line?

Alex: I don't know that there's a line that you can draw. It seems that it might be more helpful to think of, what are the considerations at stake? I think we were coming up with a list here. We added to that list, what is the effect on other healthcare providers? How many people are needed to maintain this fiction and what's the corrosive effect there? Which would argue against lying unless it's one of the only choices available in order to protect the patient's best interest.

Kathryn: I think another point that was brought up, too, is that we have to have a way to better assess what their true capacity and dementia level is before we lie. You might think that they're going to fall and go along with that, but in these cases where they're not quite that far along then you have really created a lot of anxiety and mistrust with them.

Eric: I'm sure this situation comes up even in everyday nursing care across nursing homes throughout the US. "What are you putting in my applesauce? There's something in here?" They're picking up on that and that builds mistrust between the patients and the nurses.

Kathryn: Would this be something you could think about beforehand and say, "I've been diagnosed with dementia. I still have my faculties about me and can make decisions." Would you sign an advance directive that says, "If it comes down to restraining me or deceiving me, I'm okay with just deceive me. Don't give me those drugs."

Alex: That's a creative idea, an advance directive for deception. I like it.

Eric: It sounds like, to summarize what I'm hearing, it's important first that we figure out, "Does this person have the ability to make their own decisions?" Whether or not they actually want to hear the news or not, assessing their level of capacity, their ability to make autonomous decisions. For instance, the patient with cancer, asking them how much information that they want to know.

Individuals with advanced dementia, severe dementia, also assessing what would it take also to create that deception and the harms and the risks of doing so.

Kathryn: I think, in general, in the system what we want are checks and balances. We know historically that when clinicians are doing things with the very best of intentions, if they're the only one that's so focused on that, they can get this tunnel vision and they're not seeing the full picture and they go down the wrong pathway.

Part of that checks and balances has been that we very highly honor patient autonomy or a court has to step in and give permission for that, or a surrogate has to step in and give permission for that, or an ethics committee steps in and gives permission for that. There are checks and balances to make sure that your desire to do well by me does not go askew.

Eric: With that probably comes transparency, that it should be clear to everyone involved what's going on and then if people are upset about it or feel uncomfortable about it, that there's some way that they could appeal?

Kathryn: Mm-hmm (affirmative).

Alex: Another scenario that I read about in this book, "The Moral Challenge of Alzheimer's Disease" by Stephen G. Post, is this story called "The Last Tango in Paris." The story is of 2 residents of a dementia care unit, a man with earlier stage dementia and a woman with more advanced stage dementia. This woman is a widower and she believes that this man, other resident, is her husband. She keeps buying him gifts and treating him as if he is her husband.

The man is enthralled by this and asks permission of the higher-ups at the nursing home if he can quote/unquote "cohabitate" with her. This would be, as he says, his last tango in Paris. The nursing home administration goes to the woman's daughter and asks her for permission for her mother to cohabitate with this other resident.

She refuses, flat-out refuses, and says, "No. This does not respect my mother and who she is as a person. She was very faithful to her husband her whole life. Sleeping with this other man who she thinks is her husband but who is not, dishonors who she is and doesn't respect who she is as a person." Heartbroken, this resident of the dementia care unit was eventually hospitalized, developed pneumonia and died, his relatives say, of a broken heart.

What do you think about this scenario? What are the considerations at stake here? Should the nursing home administration have argued more forcefully for allowing them to cohabitate or not?

Eric: Be part of the deception.

Alex: Be part of the deception, right.

Kathryn: Right. I think you have to separate this out from the other issue that's taking place in the nursing homes right now about whether older adults are allowed to have a sex life. I think this is separate from that because of the deception. Does she call the man by her husband's name?

Alex: They didn't mention it in the story. How would that change your perspective?

Kathryn: Honestly I'm not sure how much it would, but it would clearly mean that she really, truly ... That's different to saying, "I have a new relationship and now I think he's my husband because that's the kind of relationship I have with men. I don't sleep around with men. I think he's my husband. I've just remarried again." I do think that's different than saying, "This is Henry, my long-lost husband."

Alex: My understanding is she thought this person was her husband.

Eric: The "ick" factor for me would be if he was pretending to be her husband, which would seem ...

Kathryn: It's taking sexual advantage ... You could take this same scenario and move it out of there into any other adult situation…

Eric: A dark corner in a bar, where you think ...

Kathryn: We would not think this was okay.

Alex: Right, an inebriated person or somebody who's been given some one of these date rape drugs, for example, to make them forget, a temporary dementia, so to speak. It would seem abhorrent.

Kathryn: It would be abhorrent.

Alex: It would be abhorrent, but in this case you're talking about maximizing happiness. Another consideration that people have raised is this idea of maximizing happiness for people who are in this state permanently. It's not a temporary state.

Kathryn: Would she be just as satisfied buying him gifts, having dinner with him, spending the evening with him, or did she truly want the sexual relationship? I think that matters, too.

Alex: Right.

Eric: I think that goes back to the Truman Show is, the premise of the Truman Show is that you created this false environment for this individual where his life was perfect. He was happy. There were no lots of ups and downs, though, in his life. I think that there is something to uncertainty, not knowing where things go, and downs, too. If we just try to create the perfect, happy environment for people with dementia with no periods of sorrow or sadness, I doubt anybody in this room or listening to this radio show would want to live a life like that.

Alex: I wonder if we could go around and briefly summarize just 1 take-home message that our listeners could take away from this discussion. I'll start. I think this idea of the pernicious quality, the corrosive effect on the virtues of, not the patient but the care providers, and all those who have to engage in the deception, is something that needs to be taken into consideration here.

Is this eroding their honesty and integrity in ways they might not appreciate because its happening so subtly. That bleeds over into the way that they approach other patients.

Kathryn: I think one of the take-homes for me as I've thought about it is that there are reasons that we have these checks and balances in the system. As well-intentioned as we may be at times, I think that those balances need to remain there in some form or another. If we're going to use deception I think we should try to follow the same guidelines that we've set up for other things.

There needs to be some type of informed consent that's involved if we're going to do it, whether that's from a patient themselves, if possible, or from a surrogate or a court system. Part of it is because I feel like the dementia patients are being treated differently than other patients. Somehow we think it's okay in this population while it would never be in a younger adult, like with mental disease.

Eric: For me I guess the main take-home is I'm just going to pause more before I think about therapeutic deception. Is it the right thing? Or do you use something else? Instead of using deception, maybe just inquiring more about how they see the world and just validating their experiences. Alex, that was a great question. Maybe you can just end this off with a song as well.

Alex: This song starts out with one of my favorite lines from The Eagles, "City girls just seem to find out early."

Alex plays “Lyin’ Eyes” by The Eagles.
"City girls just seem to find out early, how to open doors with just a smile. Rich old man and she won't have to worry, she'll dress up all in lace and go in style. You can't ..."

Sorry, I'm advancing this.

"You can't hide your lying eyes, and your smile is a thin disguise. I thought by now you'd realize, there ain't no way to hide those lying eyes."

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Monday, October 31, 2016

Aligning Quality and Cost Savings Through Home Based Palliative Care

by:  Timothy Poore (@TimCPoore)

More than 90% of non-institutionalized people over the age of 65 in the United States receive health insurance through Medicare.(1) Of the money Medicare spends on individuals, it spends nearly one quarter in the final year of one’s life, and the majority of that money is spent on hospitalizations.2,3  With much talk during this election season about entitlement reform and the looming bankruptcy of Medicare, a study recently published in The Journal of Palliative Medicine is of particular interest, offering insight on how Medicare could save money by focusing on end-of-life care at home.

Cost Savings of Home Based Palliative Care

Dana Lustbader and colleagues conducted a retrospective study, comparing costs of care and resource utilization during the final year of life for patients who were enrolled in a home based palliative care program, and those who received usual care.  All patients included in this study received their care from ProHEALTH Care (a multispecialty physician practice in the New York metropolitan area), died between October 1, 2014 and March 31, 2016, and had 12 months of continuous Medicare claims data prior to their death.

Here are some specifics of the Home Based Palliative Care Program used in this study:

  • Staffed by 6 nurses, 2 social workers, 2 doctors, 1 data analyst, 3 administrative staff, and 12 volunteers
  • Each nurse follows 90 patients on a team with a social worker and a palliative care physician
  • Each patient gets approximately one home visit and two telephone calls per month with extra outreach as needed
  • Program provides 24/7 telephone coverage by one of the program physicians
  • Patients include homebound frail elders, those with advanced heart failure, COPD on home oxygen, metastatic cancer, or severe dementia

What did they find?

Of the 651 patients who died during the 18-month study period, 82 were enrolled in the Home Based Palliative Care Program and 569 received usual care.  When comparing the 2 groups, the authors found that for those receiving Home Based Palliative Care:

  • Medicare costs in the final year of life were $10,435 lower
  • The cost per patient during the final 3 months of life was $12,000 lower (largely driven by a 35% reduction in utilization of Medicare part A)
  • Hospital admissions were reduced by 34% in the final months of life
  • Hospice utilization and length of stay on hospice were both significantly higher (35% and 240% respectively)

Lastly, they found that being on Home Based Palliative Care was associated with a very high likelihood of dying at home (87%) as compared with a national rate of 24% for all Medicare beneficiaries.

The Take Home 

Nearly 90% of adults say that they would prefer to receive end-of-life care in their homes if they were terminally ill, yet only a small proportion of Medicare beneficiaries die in their homes.(2,4)  This study shows that a home-based palliative care program can decrease unwanted hospitalizations, increase the chances of dying in one’s home, and improve utilization of hospice services, all with a significant savings in cost.

Hospital-based palliative care programs have been growing rapidly across the country, largely due to the mounting evidence of improved quality and costs savings.   Maybe it is time we focus some of those expansion efforts on providing care for patients where they actually want it – in their homes.

Additional References

  1. US Department of Health and Human Services Administration on Aging. “A Profile of Older Americans: 2015.”
  2. Kaiser Family Foundation. Sep. 26, 2016. “10 FAQs: Medicare’s Role in End-of-Life Care.”
  3. Gerald F. Riley and James D. Lubitz, “Long-Term Trends in Medicare Payments in the Last Year of Life,” Health Serv Res 2010;45 (2): 565-76
  4. Joan M. Teno et al., “Change in End-of-Life Care for Medicare Beneficiaries,” JAMA 2013;309(5):470-77.

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Friday, October 28, 2016

Can your Emergency Physician find your Advance Directive?

by: Ryan Van Wert, MD

Providing high quality emergency care to individuals with serious, life-limiting illness starts with an understanding of their treatment goals and care preferences above all else.  Speaking as a critical care physician, this is absolutely essential information to have at the time of an emergency. It helps me to formulate a plan to provide the best possible care for an individual in the context of their wishes. It also helps to frame care recommendations when speaking to families, and to support them through the difficult task of speaking for a loved one who cannot be heard. So I was very interested to see two recent publications in the Journal of Palliative Medicine relating to accessibility of advance care planning (ACP) documents in the emergency department (ED).

The first study from Angelo Volandes’ group looked at 104 elderly individuals presenting to the ED at an academic medical center. Participants were asked about whether they had completed any ACP documents, and the electronic chart was then reviewed for the presence of these documents or current code status in the chart. Fifty-nine (59) percent of participants reported completing some form of ACP document.  The majority were living wills (52%) and healthcare power of attorney (54%), with fewer having DNR (38%) or MOLST (6%) forms.

Did the ED provider have access to these documents? The short answer is no. Only 8% of participants had a current code status in the chart, and only 13% had any form of advance care documentation locatable in the EHR. Of the 13 people who said they had given a copy of ACP documents to the hospital previously, only 31% could be found in the EHR, and of the 69 participants whose primary care provider was affiliated with the institution only 19% had current code status or ACP documentation available in the EHR.

The second study comes from Rebecca Sudore and colleagues, who conducted a survey of 86 ED providers at an academic medical center and county hospital about ACP documentation. First to note, this survey had an 81% response rate, which is impressive (note the compensation for participating was a $5 gift card) and I think speaks to the importance of this topic to ED providers. Not surprisingly, 95% of ED providers agreed or strongly agreed that ACP documentation is important for patient care. Seventy-four (74) percent of ED clinicians reported needing access to this information once or more a week, and 43% reported needing it five or more times per week. Only 31% of providers said they agreed or strongly agreed with the statement “I am confident I can find patients’ ACP documentation in the current EMR when it exists”. And if they could find it only 55% thought the ACP information could be used to provide patient care. The respondents were also permitted to make suggestions on how to improve ACP document availability. These included having ACP information in one consolidated place, and highly visible “on the main screen” avoiding having to “sift through notes.”

These publications give us a window into the use and availability of ACP documentation in EDs. Those of us providing front line emergency and critical care are likely not surprised by the results, but the quantitation is valuable. There are clear barriers to the accessibility of ACP documents, and in a healthcare provider’s ability to utilize the information effectively.  Let’s now take a step back for a moment and think about the process of advance care planning. This is no easy task for individuals or families. The decisions are difficult, emotional, and require an individual to be vulnerable and brave. Once documented, an individual should find comfort and solace in the fact that an ED physician will know their preferences and provide care that is consistent with these wishes. The fact that we are not providing our patients with this assurance is the most troubling aspect of these findings. This is a patient safety issue, and a true disservice to our most vulnerable patients.

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Thursday, October 27, 2016

Keep Your Hands to Yourself

This week’s GeriPal podcast is all about mechanical ventilation and dementia.  In particular, we discuss a new article in JAMA IM which concluded that the use of mechanical ventilation for nursing home residents with advanced dementia doubled from 2000 to 2013 without a substantial improvement in survival.    We also talk about a recent JAGS article about integrating palliative care in the nursing home.

by: Eric Widera (@ewidera), Alex Smith (@alexsmithmd), and Ken Covinsky (@geri_doc)
 Note: GeriPal Podcasts can be found on:

Transcript of the podcast:

Ken: Welcome to Geripal Podcast number three. Alex, do you want to start us with a song? I was thinking, in honor of Bob Dylan's receiving the noble prize in literature, how about some musical literature Alex?

Alex: Oh, Bob Dylan. I don't think I have any Dylan on hand. But what I do have is “Keep your hands to yourself” by the The Georgia Satellites. We'll do Dylan next time.

Alex plays “Keep your hands to yourself” by The Georgia Satellites.

Eric: We thought it would be good to talk about a new article that just came out in JAMA IM I think a week ago. “Association of Increasing Use of Mechanical Ventilation Among Nursing Home Residents With Advanced Dementia and Intensive Care Unit Beds.”.

Ken: Oh, that's a mouth full. So, I was really stuck by one finding in this study and I wonder what you two think of this. It said, "from 2000-2013 the chance that a patient with advanced dementia will get mechanical ventilation doubled. And presumably the illnesses haven't changed over this time. So that for some reason, we are using this procedure, this highly invasive procedure twice as often in people with advanced dementia. And you know, not only that, it varies wildly depending on what hospital a patient goes to. So, it's not necessarily based on how sick they are. There is some feature of the hospital that seems to be dictating whether or not they got this procedure.

Eric: Yeah, It did seem that a big feature of that was just the number of ICU beds the hospital had or added.

Alex: Right, if you build it they will come. You know, which raises a question for me. This study focused on patients with advanced dementia, are ICUs also admitting more patients with heart failure, more patients with X Y and Z, serious conditions as well. We can't answer that with this data. But if you build it they will come sort of issue is well known within critical care. The more ICU beds the hospital has the more they are filled with patients with serious illness, including those with advanced dementia. So, I think that's one of the factors, but it doesn't explain what you were talking about which is: there seems to be differential use of the ICU for people with advanced dementia based on the hospital. And there is something more there about the norms and culture of those hospitals that they couldn't penetrate with this large data set sort of study. But it probably has to do with whether they introduce goals of care discussions early in the course of illness for patients with advanced dementia versus late, versus never. Right? (laugh)

Ken: But one would hope that regardless of how you feel, how often this procedure should be used… One would hope the decision about whether a patient with advanced dementia is subjected to mechanical ventilation is based solely on patient benefit, that you think they will be better with that. And it appears that a huge part of what's driving the decision is if you show up in a hospital that has a lot of ICU beds, you end up in an ICU and then what are you going to do? When you are in the ICU, you go on a ventilator. So, that doesn't seem to be a good reason to be doing this procedure on patients.

Eric: Yeah, and I guess that was the surprising things for me. My assumption up to this point was if you had pneumonia or are in a nursing home you could potentially treat that pneumonia in a nursing home and prognoses may look very similar between those who get admitted to a hospital and those who don't, to the point where we are thinking about mechanical ventilation. My thought was, they are in respiratory distress, they either need it or they don't. One will improve survival (mechanical ventilation), because the other person is going to die without it. I think this study begins to question that because there has been a doubling in the use of mechanical ventilation but also there was no improvement in one year mortality.

Ken: Well, that was striking Eric. So they did this really interesting analysis; they looked at the hospitals that were in the top 10% of using this procedure and then they looked at the hospitals that were the least likely to use it, the bottom 10%. You would think, okay well maybe there is a cost here, it's an uncomfortable procedure, it's scary, buy maybe some patients gain a longer life because of this. But that's not what happened. There was absolutely no difference in survival between hospitals that use this a lot and use it a little. So this seems to be doing nothing for patients, this increased use of mechanical ventilation. It seems like: is this all harm and no benefit?

Alex: It depends on what the outcomes are when you are assessing harms and benefits. You could see that there are some patients who do survive the mechanical ventilation, that ICU stay, who have benefited from being in the ICU - but this isn't a randomized control study. We can't know that for sure. But my concern is - I don't allow that there are some patients who benefit - but I would say that the harms and the risks to patients are serious and we have alternatives that likely are more comfortable for patients who have advanced dementia, for whom an ICU stay is debilitating, frightening, and often leads to death in any case.

Ken: Yeah, I think one has to be careful about when you have a large epidemiologic study like this, one can't always go down to an individual patient and say that based on what this big study says, we know what's right for every individual. Because, when we practice medicine we have to base it on evidence but then we have to modify that evidence by the person right in front of us. And sometimes there are very good reasons why the evidences doesn't apply. Sometimes when patients are put on mechanical ventilation in this situation there may really be a belief that the patient is going to benefit but it may actually be the case that they are not benefiting at all and may they are even being harmed. Putting them on simple oxygen without the ventilation, treating them with antibiotics and supporting them maybe there is just as much of a chance of survival as with mechanical ventilation, but without all the horrible suffering that goes along with it.

Eric: I can clearly remember multiple patients that I worked with whose goals are very much focused on survival. Now, even in a state of being bed bound, in a nursing home, that they will would want life sustaining intervention such as; mechanical ventilation; or anything else; including dialysis, that they have stated in their past preferences when they have talked with individuals, like family members, and they may have even written an advanced directive. So, for those individuals, how should we think about mechanical ventilation for them?

Ken: I find that a really hard question, Eric. And I am interested how the two of you discuss this issue when you are attending on palliative medicine. I mean I think the way I have come to think about it is, we need to really honor patients and families who length of life is really important to them and they want to do all they can to live as long as possible but we also have to be honest about the limits of medical intervention. So that it's sometimes believed these interventions that are potentially life prolonging are life prolonging in all instances. In fact it's the case that sometimes dialysis, for example, is not prolonging and sometimes mechanical ventilation is not life prolonging. That sometimes medicine has its limits and that sometimes our ability to prolong life is very limited. And advanced dementia is probably a situations that epitomizes that. This study really calls into question whether this procedure even is achieving its goal.

Eric: Maybe akin to the early studies looking at feeding tubes. Where the underlying thought before the early studies were, of course feeding tubes prolong survival, how could they not? They are adding nutrition to this individual. It must increase survival. Everything that has come out shows that it doesn't. Well, likely because they are dealing with the disease they are dying from, rather than, they are just not getting enough nutrition.

Ken: That's a really good point with respect to advanced dementia, is that when patients get these complication we think of it as the complication that is hurting them. The complications are signs of how bad their dementia is and how much it has progressed. And treating the complication does not treat the underlying dementia. The treatment of advanced dementia is primarily palliative. The medically invasive things often, would do more harm than good. I think there is also a bias - that I think is really common - that when a procedure has been done and the patient does okay after the procedure, there is an assumption that the procedure helped. So that, you are put on a ventilator and you are live. Therefore, the ventilation saved your life. This study suggests that's probably in fact not happening. We don't know what would have happened to that one person if we didn't put them on a ventilator. But it's generally possible, and this study suggests that it's likely that if the patient wasn't put on the ventilator, they would have survived as well. But they would have survived without that trauma.

Eric: My last questions is, what do we do with this data? How can we improve the lives of individual with advanced dementia, living in nursing homes, when it seems like we have developed a healthcare system that is really good at achieving its results that it’s getting, which is -and this comes from other data from Joan Teno - is that the system is very good at churning through patients. Getting them transitioned between multiple settings in the last six months, month, of life and really focusing on hospice care maybe in just the last three days of life.

Alex: I think that there are several answers. One is that we need to understand the problem better. So if we had more research to understand what's actually going on in the nursing home. And some of that is more qualitative, asking the “why is this going on?” sort of questions that are hard to answer with a secondary data set study like this. But we already know that there is some low hanging fruit here. The primary approach to caring for patients with advanced dementia in nursing homes should be palliative, palliative, palliative, palliative, and that's just not the case. And some of that has to do with cultural issues, some of it has to do with reimbursement and financial incentives for nursing homes. But we need to do a better job of incorporating a culture of palliative care in nursing homes in the United States. And that's, I think, is the first place to start, and we don't need more evidence before we start doing that.

Eric: The need is definitely there. One out of four residents will die in a nursing home. For palliative care, palliative care is now in more than 90% of hospitals with more than three hundred beds, palliative care is being integrated into clinics and cancer centers. Palliative care programs are being developed for home based palliative care. There is a dearth of palliative care outside of hospice and nursing homes. The field of palliative care has to think of models, where we can actually deliver palliative care in these settings.

It just reminds me of a recent article that came out in JAGS that we wrote about in GeriPal just a week ago. The study looked at data from two palliative care provider organizations that were subsidiaries of hospice agencies, and they identified those patients who got palliative care consultations in North Carolina and Rhode Island. And what they found was those individuals who got palliative care consultations had reduced hospitalizations in the last seven days of life, last thirty days of life, last six days of life, reduced ED visits in the last thirty and sixty days of life and fewer burdensome transitions, including going to the hospital and the ICU.

So, I think that an important part of this is as palliative care providers and organizations, we also have to start thinking about the nursing home as an important place where palliative care needs to take place. Not just primary palliative care by nursing home providers but giving specialty level palliative care to these individuals as well, when they need it.

Ken: Oh, this is a provocative study. I mean it is impressive how the [inaudible 14:06] in our group just keeps adding to our knowledge on how to better care for patients with dementia.

Eric: And if you want the link to the article it will be on the GeriPal website, as well as other articles that we cited during this podcast. Alex, can you give us one more verse?

Alex plays “Keep your hands to yourself” by The Georgia Satellites.

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