Time to Remove Feeding Tubes from POLST: Podcast with Susan Tolle and Elizabeth Eckstrom

Alex: Have to have so much fun.

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

Alex: This is Alex Smith.

Lynn: This is Lynn Flint.

Eric: And Alex, who are our Skype guests on today?

Alex: Today we have some wonderful guests from up north. We have Susan Tolle, who’s the director of the Center for Ethics in Health Care at OHSU in Portland, Oregon. And also, as the chair of the Oregon POLST Committee, and a founding member of POLST, from back in the 1990s, welcome to the GeriPal Podcast, Susan.

Susan: It’s a pleasure to be here.

Alex: And we also have Elizabeth Eckstrom, who is chief of geriatrics at OHSU. Welcome to the GeriPal Podcast, Elizabeth.

Elizabeth: Thank you for having us today.

Eric: And Elizabeth, if I’m remembering correctly, you are also an okapi. Is that right?

Elizabeth: You’re the only one who remembers that, Eric.

Eric: Elizabeth has fame, because in a New York Times article, she was referenced as being a okapi … or as geriatrics as a whole was … Do you remember the line, Elizabeth?

Elizabeth: Something like “as rare and endangered as an okapi.”

Alex: What is an okapi?

Eric: It’s an African-like antelope. Is that right?

Elizabeth: I’m not sure it’s an antelope, but it’s a strange animal that I’ve never seen before. And probably will never see again, even in photos.

Eric: We will, and your name is now forever linked, thanks to that New York Times article in my brain to the okapi.

Lynn: Isn’t there a picture of an okapi in the fellows room? I think there is.

Eric: I think there is, yeah.

Lynn: There is.

Eric: Well, we’re going to be talking about your recent Journal of American Geriatrics story, your JAGS article, titled, “It’s Time to Remove Feeding Tubes from POLST Forms”. But before we do, we always start off with a song request. Do either of you have a song request for Alex?

Elizabeth: Well, in the spirit of trying to ensure that all of our older patients are allowed to eat the way they want to, we chose the song Eat It.

Eric: Alex, could you give us a little bit of Eat It?

Alex: [singing).

Alex: Well its something like that.

Elizabeth: Nicely done, Alex.

Eric: You are up to the late night working on that one, weren’t you, Alex?

Alex: Well clearly it really wasn’t late enough. But you get the idea.

Lynn: I never heard the words, and now it’s enunciated so clearly.

Alex: Well, there were a little bit of a tongue twister. It doesn’t matter if it’s broiled or fried.

Eric: It is a perfect song-

Alex: Close enough.

Eric: … for our topic today, which is feeding tubes and POLST forms. Before we go into the topic at hand, maybe we can just take, again, a step bock, like we usually do on this podcast. How did you both get interested in this as a topic?

Susan: Well, for a very long time, we’ve tried to be sure that whatever is on a POLST form, is going to make a difference for patients, and is going to result in them receiving the care they want, and avoiding treatments they don’t want.

And sometimes science tells us that changes are needed in the POLST form. As we learn more and more about the problems with feeding tubes and advanced dementia, it became clear that we needed to really rethink the original thinking in the ’90s, when we put it on the POLST form and obviously, other states followed.

It’s widely used, but its effectiveness may now outweigh the problems it’s causing.

Eric: Yeah, it always seemed like the outlier of the group, because it was one of those interventions which is usually not a urgent thing, like something we have to figure out in the emergency room. It’s something that we usually have to figure out at a hospital, or the nursing home. But it didn’t feel like an emergent issue like the other things on the POLST did.

Lynn: I totally agree. In my clinical experience, I feel like I always have described this as an extra or accessory option, on the POLST form. Because I could never imagine the first responders showing up and saying, “Stat!”

Eric: “Get a PEG!”

Lynn: “Get a PEG in this person.”

Alex: “Does somebody have the PEG kit! Quick!”

Lynn: Right. Exactly.

Elizabeth: Yeah, I feel the same way. I think that most of the time, it feels like a little different conversation. You’re talking about what would happen in an emergency, and then you have to say, “And would you want artificial nutrition?” And even the patient kind of says, “Well, that doesn’t have to happen right in the emergency, does it?”

I think everybody realizes that. You guys see so many older adults just like I do, and it’s just really clear that for the most part, a lot of people don’t want them. So that’s a pretty easy decision. But in most situations, it doesn’t help. There’s just lots of research to show that particularly for dementia, it doesn’t provide any benefit whatsoever.

But, even for things like stroke, Alex had that nice article not too long ago, showing that even for things where we maybe thought there could be some effectiveness, there really isn’t.

Eric: Well, can we take a big step back? And I’m not sure if you can answer this, but why was it put on the POLST in the first place?

Susan: I can take responsibility. First of all, there was no data in the early 1990s that feeding tubes did not lengthen life or help heal bedsores, in the face of advanced dementia. We didn’t have any science that said, it didn’t work. And there was a general sense, well, if you need more calories, it probably is useful. And there was kind of an overall leaning in that direction.

There’s been such a big shift in the medical science that it seems like, why would you have considered it at this point? But if you turn back the clock far enough, the world looked different then.

There was also pressure about the ability to refuse artificial nutrition and hydration, and a fairly high bar to have in advanced made a statement that you didn’t want it, or you were presumed to want it.

We also at the time, had antibiotics on the form as a section. We removed that in 2011 because in the final 60 days of life, you got antibiotics at about the same rate, no matter what you marked on the form. We are learning that certain things that you might speak about significantly in advance of the end of life, are not as workable on the POLST form, don’t necessarily change the outcome. And are better off counseled at the time, in the context of that person’s illness.

So we walk down the garden path a little bit, and gradually began to realize this was doing more harm than good, by having people complete POLST forms, some of whom were marking, “I want to have a permanent feeding tube significantly in advance of having a stroke or another condition.” And then having that be what their family has to guide them, demanding of healthcare that a PEG tube be put in place because that’s what the POLST said in advanced dementia. And having healthcare professionals go, “This doesn’t work; we’re not putting it in,” causing distress and harm. We have no evidence that in Oregon, more feeding tubes are actually being placed. That’s not what’s happening. But there is more distress, confusion, and conflict.

Alex: In your paper, I believe you cited evidence of changes over time, and that in fact there are a number of folks now who are selecting things like … what is the … mismatched combinations. I wonder if you could talk a little bit about the concerns that that data raised.

Susan: Well, the biggest thing we’re seeing is that POLST is so widely used in Oregon, and at a growing rate across the country, and in other countries, that as use becomes more widespread, it moves from people who are the very sickest, having a POLST form, to sometimes people who are a little bit healthier, having a POLST form.

Now, the biggest swing we’ve learned from our geriatricians, and I should have collaborated with Elizabeth much sooner, is that the needs of frail elders, particularly with dementia and Parkinson’s, is a different trajectory than those dying of metastatic cancer, than those with relapsing illnesses like advanced lung disease and advanced heart disease.

And while often POLST is for people in the last year or two of life, for others in a frailty trajectory, we do need to think about the needs of those with advanced dementia and frailty, where a year or two appears not to be what matches their needs and their overall personal goals for many of those patients.

Elizabeth: So a lot of the times, you want to be able to have conversation and get the POLST form filled out, when somebody can still help make that decision. Which could be a number of years before they die, or before they get into that window of last one to two years of life. When I’m talking with patients who might have mild cognitive impairment or early dementia, I have the full conversation around, “What would your wishes be? I want to be sure I’m able to record those now.”

We tend to do the POLST form then, and it might be five years later that they actually reach the end of life. There’s been quite a big gap, and we want to follow their wishes as best as possible.

But sometimes, and I try to be pretty specific with my patients, that I want to complete a POLST form if they’re fairly clear, they would want to limit treatment. If somebody says, “Oh, I want to be Full Code, give me the tubes, give me everything,” they don’t really need a POLST, right? Because that’s what they’re going to get anyway. So, if somebody wants to have very aggressive treatment, I typically don’t complete a POLST with them, because that’s the default. That’s what they’re going to get. But when somebody says, “I’ve lived a good life, I want to be kept comfortable, I want to maintain quality of life as best as possible. But I don’t want all of these heroic measures.” That’s when we get out the POLST, and we fill it out, and really make sure that we can honor those wishes to limit treatment, and provide optimal care. But not necessarily some of those aggressive treatments that the person has very clearly said they don’t want.

Eric: Yeah, it is interesting. A couple of months ago, we actually had a podcast on dementia directives, including what would I want now, what would I want if my dementia progresses to a moderate or advanced stage? It almost seems like we need the same thing for POLSTs and dementia. “This is what my POLST is now. But when I move to a moderate or severe stage, this is what my POLST should be.” And I can imagine if that was me, my wishes, if I had early dementia, may be very different than my wishes when I have advanced dementia.

Susan: And Eric, we need to keep in mind POLST is for tonight found down. What is EMS supposed to do? What are our colleagues in the emergency department supposed to do? It is not for, if I get more advanced dementia.

That’s a different POLST form with your surrogate, with your advanced directive, to change what it says from, for example, limited interventions. And you want to go back to the hospital but you can keep your intensive care unit, to “I want the focus on my comfort near the end.”

Eric: Yeah, I was just thinking about what Elizabeth was talking about, though. So having this discussion with people with early dementia, knowing that it may progress over the next five years, the next decade. And starting to have that discussion with them.

I can imagine that, especially around the diagnosis of something like dementia, you have a lot of fear. And a lot of questioning about, “What would life be like in two to five years?” Are they filling out that POLST form for what they imagine they will be in five years? Or are they filling out that POLST form for, “Oh, tonight if something happens to me, this is what I want EMS to do.” I would worry about which one are they actually, are they filling it out correctly for what you’re intending it to be, which is EMS stopping by your door tonight?

Elizabeth: Yeah, I think a lot of people who are in that situation are thinking about the future. They are thinking about what might happen as they get closer to the end. And, we certainly do counsel that, “Now, would you be okay with this if something happened tonight? Is this still what you would want if something happened tonight?”

And if they’re not okay with it for tonight, we say, “Okay, let’s put this on hold. Let’s fill out how you want it to be now. But then make sure that your surrogate decision maker understands how your wishes might change.” And that happens a fair bit, actually. Most of the time, patients don’t want feeding tubes anyway, which is great. So that one doesn’t change. But maybe they do want to be limited interventions. But, and so we fill it out that way. But then they can state fairly clearly, “As my disease progresses, I want to be kept comfortable. If things aren’t going well, please don’t keep taking me back to the hospital. Don’t put me in the hospital for pneumonia.” And then we can write those things down; that can be part of the advanced directives. And then later, with the family member, the surrogate decision maker, we can do a new POLST, when it is time to change them, to comfort measures only.

So it does require a fair bit of finesse. But, we want the POLST to be accurate for what your health is now, and what your values are now. But we also want to make sure that we’ve laid the groundwork for what you might want down the road. And that’s more part of the advanced directive that we can then convert into a new POLST, with the surrogate decision maker.

Susan: And there is such a tremendous need for education. For education of healthcare professionals, and for education of the public. The idea of how do advanced directives and POLST work together, is a topic that can cause enormous confusion for the general public. Why do I need two documents? Why do I need, why can’t I just use POLST to plan clear into my future? And not understanding that POLST is medical orders. It guides EMS on a protocol, and tells them what to do in a crisis. CPR, yes/no. Intubate, yes/no. Transport to the hospital, yes/no. And that is a real branch point that has a profound impact on location of death. Because if you don’t go back to the hospital, you won’t die there.

Lynn: This is Lynn. I wondered if I could pause us for a minute. I’m acting like I’m on a phone call here, saying that I’m Lynn. Anyway, what does come into my mind when I think about the folks who might end up with a POLST that sits around for five years, are a couple of basic questions in line with that education piece.

Number one, how often should we be circling back and readdressing and filling out a new POLST with folks who have an advancing illness? And is it something that we can just hand to families to take a look at, and then return back when they’re done filling it out?

Susan: Please don’t hand it to patients.

Alex: We want to make sure we got that on record?

Susan: This is a medical order. Do you hand them a sheet to write their own antibiotics? That is how we should think about this. And, I worry when people talk about time, and revisiting POLST orders. Because it is so much more related to event.

You can have revisited your POLST and had a wonderful conversation with your healthcare professional last week. And now you have had a major stroke. And the whole issue of revisiting in the context of your health status changing, moving to a higher level of care, needing more assistance with activities of daily living. All of those things are often triggers for a deeper conversation.

And the more we have what I call baby steps, in advanced care planning, the easier it is on patients and families, and the clearer surrogates are in the case of advanced dementia, on what their loved ones wanted.

Eric: All right, going back to the question about the PEG tube. I completely get the literature around advanced dementia. Doesn’t improve weight, nutrition parameters …

Alex: Does not.

Eric: …does not, worsens pressure ulcers, does not improve survival. That makes a good case to take it out of the POLST. However, people get PEGs for a lot of other reasons, including head and neck cancer patients, where there’s some survival quality of life data; ALS patients, where there’s survival, some quality of life data. Again, none of this is great. But it does show potential benefit there.

We’re talking about stroke patients, where there is some maybe improved mortality statistics with PEGs. But it seems like outcomes are the same, or worse.

Alex: Functional outcomes, in particular.

Eric: Functional outcomes. And that goes back to Alex’s article, too, where there are high rates of mortality and death. But a previous randomized controlled trial showed maybe mortality benefit with a PEG tube.

Are those reasons to keep PEGs on the POLST? Because it’s not just advanced dementia where people are getting them.

Susan: Absolutely. It’s not that there isn’t a place for feeding tubes. Dialysis is not on the POLST form. Transfusions are not on the POLST form. There are plenty of medical treatments that may, in a specific situation, be absolutely appropriate. But they are individualized to the situation, and they are not something that is usually given in a time of crisis, with presumed consent that you would want it unless you have said “no,” the way CPR is.

Patients with ALS clearly live longer with a feeding tube. They also are cognitively intact and can participate in an informed consent decision about the placement, and surgical consent forms are signed after discussion for every one of these PEG tube placements. This isn’t something that’s just going to happen because you wrote it on a POLST Form. If you said “yes,” if you said “no.”

Susan: We also have not talked about permanent vegetative state. But people can certainly live decades with a feeding tube.

Eric: Yeah.

Susan: S there are times where it meets one of the goals of medicine, if not both, to extend life or reduce suffering. Where it doesn’t is in advanced dementia. It meets neither.

Lynn: I have a question. I always think about the artificial nutrition space on the POLST form that’s taking up really important real estate. What’d you do with the extra space?

Eric: What type of chocolate do you want? Dark or milk?

Susan: We actually-

Eric: A really important question.

Susan: … expanded the options and clarification related to surrogates. We know that POLST forms, about 1/7th of all forms submitted every month to the Oregon Registry, are revisions of an existing form. And later forms are often completed by surrogates. So the more we know who your surrogate was in the original conversation, who knows what, and exactly whether they’re actually appointed on an advanced directive or a default surrogate, we brought back and included parent of a minor, because while it’s very uncommon for POLST to be used in dying children, there wasn’t a place that seemed like it felt like a fit for parents who were involved.

So we use that real estate to do much more to clarify the standing of surrogates and their involvement in the conversation.

Eric: That’s fabulous. One of the biggest things we face is this issue of the unbefriended, or underrepresented older adult, where we’re just struggling to figure out who can help make decisions. So having more access to that is fabulous.

Alex: I wanted to ask about national variation in POLST or MOLST or whatever they’re called in different states. Do you have a sense of how many states currently have the artificial nutrition category on their POLST form?

Susan: Well, Oregon started the program. And we had both antibiotics and POLST on the form. When we removed antibiotics, we knew for four years this was coming. And we advised many states, including our colleagues in California, that this was not very effective. And they never put it on the California POLST form.And a number of other states that had antibiotic sections, removed it from their POLST forms. Some POLST forms are in statute in legislation, and nimbleness is not the name of the game in those states. So they remain on the POLST form to this day. But because everything started originally with the Oregon POLST form, other states commonly, no matter what of the 11, I believe, different names there are for POLST across the United States, have a feeding tube section on the POLST form. So we are the first to remove it.

Alex: The first to remove it. What sort of pushback have you heard from, Eric mentioned one counter argument, which is ALS, and other diseases where feeding tubes might help prolong life, and you gave a great counter argument to that. I’m wondering what other forms of pushback you’ve received about this? Are there folks who say, “Well, where does it end? If you trim the antibiotics now, we’re going to trim off the feeding tubes and artificial nutrition? Are we next going to trim off the goals of care section, because that is something that maybe you don’t have to decide upon in an emergency either. And be left solely with Code status form.” The POLST is a glorified code status form.

Alex: Is that something you’ve heard? What else have you heard in terms of counter arguments to this decision?

Susan: Well, the data would suggest that if you were trimming off a section, it would be CPR, not the interventions and scope of treatment section.

Alex: Why is that?

Susan: That’s where the power of POLST is in a profoundly strong association between what is marked in section B, and where you die. And the level of return to emergency departments, aggressiveness of treatment, and for POLST-appropriate patients remembering that POLST is an out-of-hospital order set that a full arrest in the field in someone who is POLST appropriate, is going to have a much lower rate than the general public might realize of successful resuscitation. Perhaps 3%.

So the real action is in section B of whether or not you want the focus of your treatment to be on your comfort, you’d prefer to stay in your current setting if that is possible. And your comfort can be managed. You’d like to go back to the hospital and have the easy things fixed. Or you can keep your intensive care unit language, and if you can get to me before I arrest, I understand my odds are better, and I would want another round of intubation and intensive care, with my COPD or advanced heart failure.

So that allows some real categorization of what people really want, and the data is incredibly robust. Though there has never been a randomized control trial that what you mark is profoundly associated with location of death.

Elizabeth: But I don’t know that you’d want to take CPR right off the form. It could mean there are a lot of people who are going back to get these completely worthless resuscitations, and make everybody miserable. Hopefully, that’s not going to happen.

Susan: But if I have to choose!

Eric: If you have to choose.

Susan: If Alex was making me choose, I’d take A away before I take away B. But EMS is never going to let us do that.

Alex: But within Oregon, was there controversy about this? Were there people who stood up for keeping the artificial nutrition portion on the POLST form? And what did they have to say?

Susan: What’s exciting in this whole conversation, we spent over a year and went to all corners of our state, and all kinds of different groups. Whether it’s the statewide meeting of palliative care leaders; whether it’s ethics leaders; whether the geriatricians weighed in; whether it’s EMS; and the responses were a little different.

From our palliative care colleagues, the only argument we got back for keeping feeding tubes, was “It’s the easiest place to start the conversation about POLST.”

Alex: Oh, to start?

Lynn: Start with that.

Alex: I never do that.

Lynn: No, that’s…I don’t start with that.

Susan: No, [crosstalk 00:30:15]-

Alex: I always get to that portion of the POLST form, like, “Oh, I just have this sinking feeling inside, like, how am I going to relate this to all the stuff we just talked about?”

Eric: It’s usually a recommendation I give, based on what they filled out in section B. You don’t want this.

Susan: So that was the pushback we had from some palliative care colleague. Emergency medicine, both EMS in the field and our emergency department colleagues, said, “Why on earth did you ever have this on the POLST form? We never look at it anyway.”

Lynn: Right.

Eric: Right.

Susan: And, our geriatrics colleagues did acknowledge a higher rate of conflict by having people able to mark that they wanted a permanent feeding tube. And then not having anyone willing to place it, and creating some tension and conflict. That was also the case with a number of hospitalists.

Susan: Since the form has rolled out, there has been universal strong support in all quadrants of our state for the changes that have been made.

Alex: And when was it rolled out?

Elizabeth: January 2nd.

Alex: Oh wow, fresh.

Eric: Yeah, fresh.

Lynn: One month in.

Alex: One month in.

Lynn: Yeah.

Eric: Last question from me. In some states there’s been a pushback against POLST from certain religious organizations. Was there any pushback on this, or maybe push forward on this from religious organizations in Oregon?

Susan: In Oregon, our colleagues in Catholic healthcare have always believed that informed consent was an important part of any feeding tube conversation or discussion. And so there was not any particular weigh-in in one direction or another of getting rid of it on the form. Since it would be part of an in-depth, informed consent discussion before placement, just as it is now.

Eric: I said last question, but I got one more question. Can you identify the singular person who first mentioned “This should be hot pink”? The POLST form. Going way back.

Susan: Me?

Eric: It was you?

Susan: Yes.

Lynn: Oh, that’s really a celebrity status.

Eric: It is celebrity! I love it. It’s about design thinking, and thinking about how we can, instead of just doing the usual forms, these white forms that just get lost everywhere, the hot pink is impressive.

Lynn: Here’s palliative care trivia. Do you know the name of the particular shade of hot pink?

Eric: Oh, I’ve had to order it several times.

Lynn: Yeah.

Eric: Is there like a 5 in it? Something … no?

Lynn: No. Pulsar Pink.

Eric: Pulsar Pink.

Lynn: Is my understanding.

Susan: Correct! However, Oregon has taken Pulsar Pink out of the center, and only has pink around the border, because of quality issues in photocopying and scanning and transmission to the Registry.

Alex: Oh, interesting. With the pink in the middle, overlying the words itself, the scan sometimes didn’t come through as accurately as if you had black and white text.

Eric: But you have to order specific paper, then, more specific paper in Oregon, than just going to a print place and ordering-

Lynn: Some paper company-

Eric: Pulsar Pink.

Elizabeth: … has got a beautiful pink border.

Susan: But the pink border is for those who are still using paper. Some of our colleagues in nursing facilities and to easily spot the form, and it helps with EMS on the refrigerator, in the home of patients with hospice. And for those who are now electronic, you can just take a pink highlighter and go around the edge with pink. And-

Eric: That’s awesome.

Susan: That’s working out great because we’re trying to be bilingual, paper and electronic.

Alex: That’s terrific. So I’m going to join the physician what is it, Leadership Council Call tomorrow for the California Compassionate Care Coalition, and argue that we should remove the artificial nutrition section from the California POLST, which is probably the largest registry in the country.

Elizabeth: Great.

Alex: Any advice? Other than what we’ve talked about? What was the hook for people?

Susan: Well, it depends. If you’re EMS, you’re already hooked.

Alex: Right.

Susan: You think it makes no sense at all, and why on earth was it on there?

Alex: Yeah.

Susan: And, the growing scientific data about how confusing this is for families, to be offered the option in the context of advanced dementia. And that there is always an informed consent discussion prior to the placement of a feeding tube. That it will not be something that’s going to happen into the crisis.

Elizabeth: And after a month of having the new forms here in Oregon, there’s been no pushback. Everybody loves it. So if you tell the California folks that, hopefully it’ll be a no-brainer.

Alex: We’ll see.

Eric: We’ll see.

Alex: It’s a contentious bunch. They love to argue!

Susan: Well, that’s a lot about history. The amount of emotion in taking the pink out of the center of the form, was actually quite high.

Alex: That is-

Susan: And change comes slowly. People just get very attached to what they’re used to, and the way they’re used to having these conversations. And so, pushing science a little farther forward, can sometimes take a while. And it did take us four full years of going around the state and negotiation, to get the antibiotics section off the form.

Elizabeth: So this one only took a year, which means you got better at it.

Susan: We got better at it, and the data was pretty strong.

Eric: I can imagine the big Pulsar Pink lobbyists really pushing hard against this change.

Lynn: I have to go now, because I have to sell some stock.

Eric: Quick Lynn! Quick! Move away from Pulsar Pink.

Well, I want to thank you both for joining us. This was an absolutely wonderful discussion. I learned a lot, and it’s really amazing, how Oregon and what you’ve done, really, has been in the forefront of how we’re thinking about these decisions in the rest of the states.

Alex: Yeah.

Eric: Again, a very big thank you.

Alex: Thank you, Susan. Thank you, Elizabeth.

Eric: Maybe before we end, though, Alex, you want to give us a little bit more of Eat It?

Alex: [Singing]. Sorry, it’s too funny. [Singing]. I can’t play; I’m laughing too hard. This part is great. Maybe I can bridge with this. [Singing].

Eric: Is this going to be the national POLST theme song after this? Hot pink, and Eat It by Weird Al.

Alex: [Singing]. All right, there we go.

Eric: Yay! [crosstalk 00:38:32]. Again, a very big thank you, and thank you to all of our listeners for joining us this week. We look forward to having you next week.

Alex: Bye folks. Thanks.

Lynn: Bye. Thank you.

Elizabeth: Bye.

Susan: Take care. Thank you.

Elizabeth: Thanks so much.

Alex: That was terrific. Thank you so much.