Wednesday, March 14, 2018

Should Concept of the "The Good Death" Be Buried? A Podcast with VJ Periyakoil

On this week's podcast, we talk with the authors of a Journal of the American Geriatrics Society (JAGS) article titled Should We Bury “The Good Death"?  As luck may have it, one of the authors is co-host Alex Smith, and the other is a leader in geriatrics and palliative care, VJ Periyakoil.   Alex and VJ's critique of the ‘good death’ was published alongside a paired commentary from Age and Ageing from the British Geriatrics Society.

So listen in and check out these two great articles:

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

Alex: This is Alex Smith.

Eric: And, we have another host with us today, Lynn Flint.

Lynn: Hello.

Eric: And Alex, who is our guest?

Alex: Today we have VJ Periyakoil who is joining us from the VA Palo Alto in Stanford, just about an hour south of us. Welcome to the GeriPal Podcast VJ.

VJ: Thank you so much for having me, it's a lot of fun to talk with you guys.

Eric: And, we have a really interesting topic today, the topic of the "good death." We'll talk a little bit about what that means and articles that you wrote in the Journal of American Geriatric Society and another article on Age and Aging on the similar subject. But, before we do that, we ask all of our guests, do you have a song for Alex to sing?

VJ: Absolutely, I love Adele so if Alex can sing "Hello" for me because I feel that that talks about ... that has a lot of relevance with life review and other palliative care topics so, Alex, take it away.

Alex: I am not Adele.

VJ: We can hardly tell Alex.

Alex: Just in case there was any question. But, I'll give it a try. [Singing]

Alex: That's a little taste.

VJ: That was amazing. That was amazing.

Eric: Well, there's more to come at the end of the podcast.

Eric: Alex is going to hit the highs.

Alex: We'll see.

Lynn: I thought that song was about somebody's phone not working. I don't know.

Eric: Who talks on the phone though? Is that like a text hello?

Alex: Well, Eric and I were wondering if this is hello from the other side, like a person's died and they're looking back.

Eric: So, VJ, why did you pick this song?

VJ: I love her voice. It has so many layers and it's just amazing so I'm a big fan. But, this song also has, sort of, palliative care relevance, exactly like Alex said, "hello from the other side." There's a lot of regret, which is one of the primary emotions we see with people as they are dying. And then she talks about love and forgiveness so, I felt like it was very appropriate for palliative care.

Eric: I always thought it was the other side of the pond. No?

Lynn: Oh.

VJ: That's right. That was another reason I picked it, because this is a companion article with our colleagues from UK so, I thought picking a UK singer would be appropriate.

Eric: Wonderful. So, Age and Aging for those who don't know is part of the British Geriatric Society, and Journal of American Geriatric Society or JAGS is associated with American Geriatric Society, so this is the perfect song VJ. Well done.

VJ: From now, it's just going to go south, this whole ... my contribution.

Eric: So, let's talk. Now, I'm going to turn Alex no longer into a guest, I mean a host. He's now a guest and Lynn Flint, also from UCSF is going to be co-host cause Alex co-authored a paper with VJ in the Journal of American Geriatric Society on the title ... get ready for this audience, "Should We Bury the Good Death?"

Lynn: Great title.

Eric: Great title.

Alex: Is it cheeky?

Eric: Interestingly-

Lynn: To use a British word.

Alex: To use a British word.

Eric: We're much less cheeky in their title in Age and Aging, It was “Reappraising the Good Death for Populations in the Age of Aging”. I got to say, I think you won out on the title guys.

VJ: And, they won out on the gravitas.

Eric: They did. So, maybe before we get into the topic, how did this come as an interest to you?

VJ: From my side, I have been taking care of patients as you guys have and been at the bed side of patients. I don't think I ever heard any specific patient talk about wanting to have a good death. People want reasonable dying experience. That is all the grief, and the joy that comes at the end of life as people are looking at their life in a whole different way. But, I never had a patient tell me, "please make sure that I have a good death." So, it's more about the dying and so I feel like this is more of a issue for the clinicians and not as much for the patients. I believe that was one sentiment. I'm curious to see what Alex thinks.

Alex: Yeah, I think that's absolutely right and clinically I think we've all had this experience and went through it ourselves most likely. In residency, you often feel like you are torturing patients. You're flogging them. Those are common phrases. And so you develop this concept, not explicitly, but implicitly through this, what they call a "hidden curriculum" that there is a bad way to die. And, you also, at the same time, develop a concept of what a good way to die is and that a good way to die is at home, without having CPR performed, without being in the intensive care unit. And I think many of the trainees that we work with have drank that Kool-Aid and come to training with that zeal for "I'm going to help people experience the good death and avoid the bad death."

Lynn: But not until I've done lots of things and I'm absolutely positive there's no more tests or interventions to do.

Alex: Right, there are different sides to it. There are those who believe that the good death ... that no death is a good death and that they have to do every test, leave no stone unturned and that has driven, in a large part, this sort of conveyor belt as Zitter described it when we had her on our podcast, of technological intervention and increasing medicalization of the dying process. But, there are others who are drawn to geriatrics and palliative care as disciplines who fight against that movement within our system.

Lynn: Well, the point that I was trying to make there was around, I think, attention that both of these articles get at, which is that it might actually be easier to ensure a "good death" if we really focus on it at the very end as opposed to making these big, broad sweeping changes to the system. Or, to the way that we care for patients who are dying and slowing down over a period of time.

VJ: I’d say that there is ... concurrently there is a need for both population health approaches at a very broad level, but also personalized strategies that fit the individual patient right in front of us. And I think that might be what you're getting at a little bit Lynn. In terms of, what is the right thing to do. And then the other question I often find useful in providing care is, at every step of the way, asking something very simple, which is, "who are we serving and what do they need?"

So, if I'm serving myself because I want to do one more CT scan just so I can see, or just so I can be less anxious, that's a different agenda right? Meaning I'm serving myself as opposed to, "what does this patient in front of you need?" And, it might be that they want the CT scan, which is a whole different issue, right. But it comes down to who is the patient at the given time and sometimes the doctor is the patient, meaning they're treating themselves more than treating the patient.

Eric: OK I'm going to take it a step back at this point. If you're gonna argue for burying the good death, how would you define, what does the phrase "good death” mean?

Alex: That's a good question. I think that's part of the problem with the good death, is that people develop ... sort of try to attribute to others what their own conception of the good death is. And one of the points that we argue in our paper and that Christian Pollack and Jane Seymour argue in the companion paper in Age and Aging, is there is no monolithic concept of the good death. The good death is highly individual and is highly influenced by your own personal experiences, your history, cultural attitudes, beliefs and behaviors, your social networks and relationships. And that, when we impose one standard of the good death, the good death is dying at home for example, as has been instituted in the UK, for example, as a quality metric. We actually constrain choice, autonomy and we don't allow for the tremendous diversity of perspectives and experiences that people bring to bear towards the end of life.

Eric: Well, in the UK is the quality metric where you die? Like, your preferred place of death, or is it-

Alex: Oh actually you're right. It's a preferred place of death, yeah. Which is good in a way because it's a match between goals and location rather than assigning it as a home based death. Although there is an increasing focus, I should say, talking to Christian and Jane Seymour about what's going on in the UK on death at home.

VJ: I'd say that even having a doctor ask that question is a huge step forward that we would even ask the patient where might be an ideal place for them to spend the last days, hours. And that then immediately personalizes the conversation and hopefully serves as a gateway for patients to tell us more about what matters most to them in a way that we can serve their needs to the extent we can. And as Alex said, we're really constrained by the system that we are in and to be mindful of that as well.

Eric: So there was another great JAGS article that just came out this week on the "Influences of Care Preferences of Older People”, lead author was Simon Etkind, I'm not sure if I'm pronouncing that right. But, I really like this article because it talked about the different influences on preferences including, they had a wonderful diagram showing that how family and care contacts, individual aspects and illness aspects all influence care preferences and probably one of the strongest influences is actually that family and care contact. So, it may not be enough just to ask people, where would you ... what's your preference of where you would want to die. Cause that may different also than what's possible, what other worries that they have. Because they talk about in this article how patients also, one of their leading things that they're concerned about is not being a burden to their family members as well.

Alex: Right, this is an incredibly important point here. When Karen Steinhauser did her landmark study, she actually titled it, "In Search of a Good Death," right. And then she did a survey, a national survey, of people with serious illness to caregivers and people who worked in hospice palliative care. She found that, yes, people felt it was important to die at home, which is always cited in studies. People want to die at home but there's a mismatch for dying in hospitals.

But, it was the seventh most important factor that patients ranked, right. Seventh most, and above that, factors like, not being a burden to people they love, having a sense of spiritual connection and getting right with God before dying. Those factors were higher, being free from pain. And so those factors might intervene if somebody can't be at home without burdening their loved one, without being in pain, hopefully not with the support of hospice. But you could see how that might lead to decisions that lead a person to not die at home. Because when we assume that the preferred place of death should be the top priority or that dying at home should be the top priority, we impose that decision on people, we're constraining their choice and not allowing for this, I'm just looking at this figure now, this whole larger context that the person resides in.

Eric: And we'll include that JAGS article in our podcast review on GeriPal website. And, going to Alex's point too, if I remember the Steinhauser study correctly, while family members and physicians viewed being free from pain highly important as far as a good death, patients valued being mentally clear more than being pain-free. Is that right?

Alex: That's right. I also believe that dying at home was ranked more highly by clinicians than by patients.

VJ: I think that as people get sicker, and we have data nationally that show that people's functional status declines significantly in the last two years of life right. And at that point, to me this individual view of what they want or your own personhood, sort of, becomes a little bit more translucent, if you will, and we ... at least in my experience I find myself providing care for a care unit. So it's not just about what the patient wants, it's also about what the family can support. And so this concept of a good death being at home sort of disintegrates, then, if is culturally a taboo for someone to die at home or the patient feels that this is a burden that their loved one just cannot do at this point because they're working and there's just one person working at home and therefore, they want to be some other place, be in the hospital or in the nursing home. So, I think that the care unit, to me, determines what is a reasonable course of action, as opposed to the individual by themselves, which is very different I think from when you and I are healthy and our choices are our choices. I don't know what you guys think about that.

Lynn: Well I have a question, this is all ... this is all really complicated. I'm looking at the figure, there's a lot of words and arrows and there's context and patients, and families and we talked a lot about trainees in the beginning, if we take away this concept that there is a good death, are we really expecting people to suddenly absorb all this complexity and take care of these really complicated patients?

VJ: I'd say, Lynn, that actually why the diagrams and the research might be complicated, to me it all comes down to something very simple. It's what matters to you. Who is in your life, who's providing care for you and for the doctors to know that, that social history that was recently on Twitter, that little meme that talked about the death of the physical exam. I think that the social history, the physical exam, the being at the bedside just, it's again, back to the basics and it's just the very simple stuff. We jump to the PET scan and the MRI and I think in that rush we sort of lose the very basic things. So to me, it's not at all complex. It's just very ... actually it's on the other end, it's very simple

Eric: And I'd add to that to say that, I'm not saying that physicians or trainees should abandon their moral responsibility to guide patients toward care that aligns with their goals and their values. And that often times patients may, unintentionally often, because they're on this treadmill of medicalization, believe they have to follow a pathway of care that includes highly intensive, aggressive measures, tests, treatments. And that we actually, we do have a moral responsibility to say, "hey, I worry about where that will lead, you said that, it was important to you to be with your family members, to be able to interact with them as much as possible, to get home, to work in your garden. Those things are what matter to you. Having this test, having this treatment, they don't really align with those goals”. So I think we do have a responsibility but it's a more nuanced responsibility.

And I agree with VJ, a lot of this is re-training people to be less like, oh you have to ask about each of these individual domains to actually thinking about it, you need to be more like a taxi driver or a barber who will just ask you questions like, so who are you? So where are you from? So what do you like to do? What's important to you?

Eric: Okay, so there's a lot of talk in the field of palliative care and in geriatrics of measuring what matters. There's actually a white paper on measuring what matters in palliative care. I'm hearing that the concept of the good death as a monolithic thing is not something we should be aiming for. What's the opposite of monolithic ... polylithic, is that a thing?

Alex: I don't know.

VJ: That sounds like a new religion there.

Eric: Polylithic good deaths. Do we have to throw the whole concept away because what I'm hearing is that there is good deaths but it's individualized. And how, is there a way to measure that? That we're doing a good job in following people's values.

VJ: I think before going into measurement, I feel like we need to think a little bit more about the process. And to me, going back and layering on what Alex was talking about, it's going back to the basics and practicing not just high-tech medicine but also concurrently high-touch medicine where you know who you're treating. And then this other, the moral obligation and the ethical obligation that Alex was talking about. To me, if I don't have that ethical responsibility to my patient, that's the day I'll get replaced by a computer algorithm, right. And so, to me, it's really important to separate out the options that patients have available to them. And separate the options from the opinion that we have. What is our expert opinion based on, clinical practice and conferring with other colleagues and people come to us for our expertise. So if we withhold expertise and let them do their own thing in an unformed fashion, I don't think you're doing anyone any favors. But I'm curious to see what you guys think about that.

Eric: Well I mean, I think that's great. Medicine, though, is ... in palliative care, we're moving more and more towards measuring things so if it's high-touch, next week there'll be a quality metric on how many times I touched the patient. Be constantly touching them.

Lynn: Ew.

VJ: Hashtag MeToo.

Lynn: Exactly.

Alex: Let me say this, I think the holy grail that... from putting on the researcher hat. And the research community in palliative care is developing a metric for goal-aligned care. We don't have this metric. We don't know how to develop it. We don't know how to assess it. But I think that's what everybody's after because at its heart, right, as Diane Meyer's says, palliative care is about lining treatment with goals. But how do you measure that? I think that's a challenge for our research community at this time. But you can see how that goal is very individualized.

Eric: I'm just going to go back to the article, sounds like the UK is a little bit ahead. Even if the metric of preferred place of death may be suboptimal because it's just one thing and I think we can argue about preferred, in the context of their care and everything else, but at least it's something that we can see, is the care aligning with their preferences?

Alex: Yeah.

VJ: I'd say that it would be hard to compare UK with US because of the health care system being so different. So a preferred place of death might make a lot of sense where they have universal health care whereas, though we have the affordable care act, there is much more work that needs to be done here, so it's very easy to ask patients what their preferred place is but it may not always be feasible. For example, many patients will tell you when they are, especially when they are of the young old, right, from 65-74, they'll be like, "I never ever, ever want to be in a nursing home". But then we know that reality is not always that easy. So in one sense, unless until we have healthcare systems in place and we want people to be able to die at home, how are we going to support them? Where is the workforce that is claimed to be able to do that? That's a whole separate issue and without that, it's almost unfair to compare ourselves to the UK in the sense that we don't have that infrastructure, the way seem to do.

Eric: Well I was actually shocked in your article that more people in England die in the hospital and die in nursing home ... more people die at hospitals, not in nursing homes than in the US. What's going on there?

VJ: Alex and I had the "ah-ha" moment, that was exactly right so we actually reached out to Christian and Jane and asked, "is this really true?". So, Alex, if you want to talk a little bit about what you did after that?

Alex: That’s absolutely right. We were surprised about that too and they said, no, this information is correct. There are a high proportion of people who are dying in hospitals in the UK and I think that's part of the driving factor by making preferred place of death a quality metric because so many people prefer to die at home. But as we've said earlier, they may have other priorities that are higher. The system is aware that deaths at home are less expensive than deaths in the hospital.

VJ: I think you put your finger on the most important point here, Alex, in the sense that the elephant in the room is, what is the cost, right, of all these procedures? The cost of providing care at the bedside, the home health aide cost and who is going to foot that bill. Because we look at ... every year, now you have this report that comes out saying the health care costs are escalating and so there is this collective national anxiety of who's going to pay the bill. And listen, until we take a good hard look at where's all this money going, and where should we redirect it in a way that we can provide preference sensitive care, I think it'll be hard to solve it. You know we could think about metrics but unless there's a system change, what we measure is going to keep telling us that what we are doing is not exactly ideal.

Eric: Yeah, the last thing I have, just that I want to hear your opinion about, is this like the good death also seems like, to me, is a concept rooted around, ways people died 20 or 30 years ago. Where death was rather quick versus now where, we have an aging population, where multi-morbidity plays a larger role. Where neurodegenerative diseases like dementia, where people ... the process of dying is no longer over days or weeks, or even months, it may be over years. And just focusing on one thing, where someone died, misses the whole point. Like Joan Teno's work on how the hospital, our medical system just churns people through. We can get the home but they may only be home for like three days. So, I just want to hear your opinions on that.

VJ: Two comments. One is to think about, when does dying begin? Right, what does that mean? When is that process for a given patient and are we prolonging life with quality or are we prolonging the dying process and then bringing the patient into that. So, that's one aspect of it. And then, the work that MedPack is doing with post acute care, looking at all the aspects of on all the organizations that provide care, so when hospitals discharge patients quicker and sicker, where do they go and making everyone sort of accountable, I think that's a great step in the right direction.

Alex: Yeah, and just to build on that ... I think actually, the Age and Aging editorial does an even better job than we do at hammering on this point, that the demographics of dying and the end of life have changed. And the system, as you said, is antiquated and is constrained around this old sort of dying trajectory of cancer. People have an acute illness and die. But, it is not, it is not set up for older adults with multi-morbidity, with frailty, with disability, with dementia, cognitive impairment who are experiencing a much more prolonged trajectory of symptoms, of suffering, of need for assistance with daily activities. And that we need a massive reorganization of services to deliver palliative care to the population that needs it most and our systems, as they're currently set up, for providing care to those patients are wholly inadequate.

Lynn: I'm still thinking about the trainees.

VJ: Someone has to Lynn.

Lynn: I'm thinking about it because I think they're the ones who end up feeling this tremendous stress of our system that can't deliver the things that they really want for their patients. And I worry, a little bit, that if we sort of take away this idea that there can be a good death, that they'd need more concrete guidance. The people who are doing the front line care, at least in the academic hospitals, need to have a little more simplicity and sort of, what to be focusing on for their patients.

An example being, an intern can have a patient who is on "comfort care" in the hospital and they can really easily know how to avoid tests and interventions for that person. But I observe them really struggling with the patient who might be in the hospital and have frailty and ADL, need for ADL support and maybe they have pneumonia and they want to try to get through it but they don't want you to do too much to them. Keep them as comfortable as you can doctor while they're here. People really struggle with those in between situations where, in fact, the preferences are really personalized and unique. And I find that that's really hard for learners.

Eric: Response?

Alex: Well, I'll respond by saying ... I think med students are capable of tremendous complexity and-

Lynn: I'm not saying… they're simple minded.

Alex: But I think our system has trained them to appreciate complexity in immunology. Complexity in neural function and cellular pathways. But we haven't done a good enough job of teaching them the complexity of social interactions, individual preferences and how to communicate with patients in order to elicit those goals, values, and preferences to align treatment with those goals. And how to align treatment when those goals ... when it's complex. When the focus is on preserving function, not preserving life at all costs or preserving comfort at all for all costs.

Eric: Well said.

VJ: Yeah really well said. I would add to that and say, I mean Lynn I think you raise a really good point in how does one teach this in a way that people are not really confused. And how do you teach this to a medical student who is taking care of a patient in the medicine wards for the first time. To me, it's a zoom in, zoom out approach. I think we do really well with zooming in. You know, chase the pathology, get the blood cultures. Give the right antibiotic, look at the map and send the patient to the ICU.

We do really well with zoom in and intensity. But I think what we don't teach as much is the zoom out and put this patient in the context of their life trajectory. For example, things like, how old were your parents when they died? Who do you know in your family who has lived beyond a certain age. Some very simple questions that will allow us to do some prognostication and then be able to say okay, for this particular episode we will zoom in. But then I also want you to give me a zoom out plan in terms of what you want to do and when there's conflict between the zoom in and zoom out, that's where the uncertainty is. So, I don't know if that answers your question at all a little bit, but ... and I'm glad to redo this if I need to Eric, but tell me if that makes sense.

Eric: We never edit any of our podcasts.

Alex: Yeah what are you talking about?

Eric: Well, with that VJ, I just want to thank you and Alex for being on this podcast.

Alex: Thank you VJ.

Eric: As well as the authors of the Age and Aging paper, Christian Pollack and Jane Seymour and my co-host today Lynn Flint.

Alex: Thank you Lynn.

Lynn: Thank you.

VJ: Thank you.

Eric: Alex, do you want to send us off with a little song?

Alex: Sure thing. [Singing]

Alex: Alright, that’s enough of that.

Eric: Well, I want to thank all our listeners for joining us on the GeriPal podcast. This podcast is coming out during the American Academy of Hospice Palliative Medicine, AAHPM, HPNA and SWHPN Meeting in Boston. So we all look forward to seeing everybody and on Thursday, if you're in Boston, we have our annual Pali-Med-GeriPal party that starts at 9 o'clock. You can hashtag HPM party to see where we are at.

Alex: Bye folks.

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Tuesday, February 27, 2018

Tim Quill on voluntary stopping eating and drinking

By: Alex Smith, @AlexSmithMD

For this week's GeriPal podcast we are honored to be joined by Tim Quill, palliative care physician and bioethicist from the University of Rochester, New York.  Dr. Quill has pushed our nation to seriously grapple with the issue of physician aid in dying with a remarkably thoughtful and measured approach.  We talk with Dr. Quill on this podcast about voluntary stopping eating and drinking, and a paper on this topic he recently published in JAMA Internal Medicine.

As noted in the podcast, I am deeply ambivalent about physician aid in dying.  I find voluntary stopping eating and drinking (VSED) to be far more acceptable.  Some of this has to do with the acceptability of positive and negative acts (positive act - giving a patient a prescription for lethal medication; negative act - not inserting a feeding tube in a patient who refuses to eat and drink).  Some of this just has to do with the time course:  patients who stop eating and drinking must have the resolve and dedication over time.  And they can change their minds.

We address many aspects of this issue on the podcast, including:

  • Who is VSED appropriate for?
  • What can patients expect?
  • How does VSED compare to other "options of last resort?"
  • What is the role of palliative care?
  • Should hospice's deem a patient eligible if they would not have a less than six month prognosis if they continued to eat and drink?
  • When should a psychiatrist be involved?
  • What if the suffering is not physician, but social or psychological?
  • Is VSED legal?
  • Should clinicians routinely offer VSED to all patients with serious illness as an option?

How do you feel about this topic?  Feel free to respond in the comments, or on Twitter!

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

Alex : This is Alex Smith.

Eric : And, Alex, who is our special guest today?

Alex : Today we have Tim Quill, who is well known and probably known to all of our listeners. He is a well known palliative care physician from the University of Rochester in Rochester, New York, and past president of the American Academy of Hospice and Palliative Medicine, researcher, among many other great things. Welcome to the GeriPal podcast Tim.

Tim : I'm very happy to be here.

Eric : We've got an exciting topic to talk about today, voluntary stopping of eating and drinking. A JAMA IM article that you wrote. But, before we go into that article, do you have a song request for Alex?

Tim : I have a random thought about Knock, Knock, Knocking on Heaven's Door.

Eric : There was no preemptive discussion about that one.

Alex : No, never.

Eric : Never. We would never. [Singing].

Alex: So, voluntary stopping and eating and drinking among people with serious illness, this is a weighty topic.

Eric: I got a question. How did you get interested in this topic because you've written about other very similar topics before?

Tim : I think this comes up as a topic as you are searching for options for people who don't have good options. Again, we're talking about people at the very, very end of life who are saying, "You know, I'm getting near the end. I'm not sure I can put up with this any longer. I've been dying a long time. What are my options?"

So, physician assisted death has gotten a lot of press around this but a lot of these folks might not even qualify for that. We're searching for ways to help them that might be acceptable to society and to the profession and this is one of the things that came up.

Alex : Do we have any idea how common this is currently?

Eric : And when we say "this", what actually is voluntary cessation of eating and drinking?

Alex : Maybe we should start there. What is voluntary stopping of eating and drinking?

Tim : So, I'll tell you first what it's not. It's not the normal kind of loss of drinking and eating ability that comes at the very end of life. These are also people who are very sick but they are physically capable of eating and drinking, but they are tired of dying. It's going on too long. They make a willful decision to stop eating and drinking in an effort to hasten their death. Generally takes about one to two weeks, depending on how sick and debilitated you are going in, and it also can take a lot longer if you're not really really disciplined because not drinking is really hard.

Eric : So maybe taking a couple sips here or there if you have a really dry mouth?

Tim : Yeah. Truthfully, you really have to spit it out if you really want it to go as quickly. It can go not just weeks but months. I have had patients who were sipping here and there and trying to do this and it went on way too long. So, can sip but then you got to spit it out. It's really for people who are super disciplined, generally people who like to be in charge or in control of their lives and who don't have probably the options that they would like to have.

Eric : Alright. So, for most states for physician assisted dying, physician assisted suicide, whatever we want to call it, there's a prognosis ... In the state of California, you have to have a prognosis of less than six months. Are we thinking the same for voluntary stopping of eating and drinking or is it eligible for others?

Tim : I think in general you're thinking the same thing but it is potentially eligible to others. Probably the most common situation which would be on the edges of this prognostic issue is somebody who has early dementia, sees down the road something that they are dreading and don't want any part of. They need to act before they really lose capacity. So, again, this would be controversial, but their prognosis might be, if they were given ongoing support, quite a big longer than six months. They could still do this within most people's thinking, including mine.

Alex : I also wonder if it's a potential option for people with other neurodegenerative diseases. I'm thinking in particular of patients who reside in states where physician aid in dying is legal but you have to be able to self-administer the medication. Right?

Tim : Yeah. One of my early cases where we did this was a patient of mine with ALS. He had had a brain tumor about 30 years ago, had radiation, did very well, big motorcycle rider. But then, developed a degenerative brain disease that looked very much like ALS. He went along for a very long time but then wanted to have some option to escape and eventually chose stopping eating and drinking, which he did on our palliative care unit. For him, eating and drinking was quite an ordeal. Even if he lived in a state where assisted dying was legal, I don't think he could've self-administered sufficient amount of medication to do it. Again, it was an option for him.

Again, in these cases, we are trying to find the least bad way to respond. None of these are particularly elegant, but they're for people who don't have good options really. None of the options are particularly uplifting in a certain way.

Eric : You call these "last resort options" in the paper. Can you give our audience a idea of what are the last resort options?

Tim : Sure. There are a number of them depending on where you live, but the ones that are easiest to comprehend are if you're on life support you can go off of life support even if your desire is to die sooner. Ten percent or 15 percent of people on dialysis die because their situation changes and they choose to stop dialysis. So, that would be stopping life support, which would be a last resort. You wouldn't want somebody to do that on a bad day or when they're going through a period of depression. You want people to carefully think it through.

Then there's palliative sedation. Again, mild levels of palliative sedation probably don't hasten death at all. They're just part of normal palliative care. But, when you get into heavy sedation for things like delirium or things like maybe bleeding out toward the very end of life or those kinds of things, you're really talking about something that may hasten death by a small amount. Again, you want to have safeguards for that. The safeguards for sedation are different than this because this is an option for people who lose capacity.

Then there's stopping eating and drinking. There would be physician assisted death in the states where it's legal. In other states it may be done under the radar screen much more risky. Then, if you happen to live in Canada, all of Canada now, you have the option of voluntary active euthanasia. So, there are a range of options. Safeguards are quite similar for these, although they may be different in some of the details. But, they're all, I say, last resorts because they really all end in a patient's dying sooner.

Alex : Focusing in a little bit more on the voluntary stopping eating and drinking. What are sort of the aspects of voluntary stopping eating and drinking compared to some of these other options that might be attractive to some people and what are some of the aspects that ... I had one patient who said, "What about the eating part? Can I continue eating?" I said, "No, that's actually part of the voluntary stopping eating and drinking."

Tim : If you're a foodie, this is going to be a hard thing to do. But, point in fact, most people ... The stopping eating is relatively easy because you get ketotic relatively quickly and then you lose your appetite. On the other hand, the stopping drinking is very hard because you get really, really dry and your desire to moisturize, to get something wet in, is very strong so you have to really take it in and spit it out. So, again, it takes a tremendous amount of will power to do this.

It also takes a while. The good part is in that first week or maybe a little longer, whatever mental capacities you have, they're still there. So, there's a good opportunity for a lot of the good hospice goodbye stuff, saying goodbye to family and making contact and making amends and all that. Then, the later phases gets a little tougher because you tend to become delirious. You lose the ability to maybe think as clearly. Again, tricky part to this is, as you lose capacity, you might then think, "I'm pretty thirsty and I'd like to have something to drink." So, you have to sort of think through those kinds of challenges in advance.

It's not fast enough, though, for people who are having severe, overwhelming physical suffering. Right? It's just ... Two weeks that it takes is way too long. So, this is really for people who are tired of dying, by and large.

Eric : I can only imagine the challenge of somebody who is absolutely 100 percent sure they want to go ahead with this, they get delirious and then they're requesting food and fluid. How do you handle that? I can only imagine in a nursing home, the drive for people just to give them fluid, or a caregiver at home. How do you deal with that?

Tim : I think because it's something you can anticipate, first of all, you talk it through in advance. "How should we handle it if you lose the ability and you want a drink?" You try to make a decision in advance with a patient and family. "How are we going to handle this?" ... and the staff, for that matter. Now, again, if it's your palliative care staff, you probably have more of an advantage of really having a long term relationship and thinking it through. Whereas, if you're in a nursing home and they're trying to do this there, it may not be doable there because it so goes against the culture of most nursing homes.

Having said that, you think it through in advance. If a patient, though, really says, "I'm changing my mind. I'm really thirsty," you let them change their mind. If they then get un-delirious and say, "Geez. I really wish you didn't do this." ... So, sometimes people have to try this a couple of times before they make it through. I don't know that you can have 100 percent hard and fast rules here. You're trying to do the best you can to keep the patient in charge about what's going on.

Eric : Has anybody ever gotten mad at you for actually giving some fluid and then coming out of it again and wondering, "Why did I just go through all that?"

Tim : You know, how many cases have I had in my career? Maybe five or seven cases in my career, and it's never happened in mine. But, I do know of cases where it has happened. I also know of cases where people have, these are with colleagues of mine, where they for whatever reason either weren't clear enough with the patient or the patient couldn't stick with the program, where it really went on way too long. I think that's a disaster. I think there's added suffering that goes with this. You just don't want to go through that unless you're really clear about what you're getting into.

Eric : Going back to Alex's first question. How often does this happen? Because, I'm thinking back in my own ten year career in palliative care, I think we've seen it once or twice where we've formally called this voluntary cessation of eating and drinking. Is it just happening a lot and we just don't know about it or is it just really rare?

Tim : I think it's fairly rare. It's fairly hard to do. I think, also, people who don't know a lot, don't know it. So, there's a question about, let's say you live in a state like New York where I live and somebody would really prefer to have physician assisted death but you can't do it because it's illegal or you live in a place where it's legal but you can't do it because you can't live with that. Do you actually tell people about this as an option or should you withhold that information? Again, some of that will turn on your own ethical stance on whether this is permissible. Is this in the realm of something that doctors should support? Again, does a patient then have to discover it for themselves? It seems to me that's pretty unfair because we've done a lot of thinking about this and these are folks who are very desperate to find some kind of a response to their situation.

Again, like with physician assisted death, many people with knowledge that they could do this, choose to live a lot longer but they don't feel trapped. This is another one of those escape valves that you know you could initiate at a future time if you want to do it. Now, if your disease is dementia, that's tricky because if you postpone it too long and you lose capacity, then you really can't do this. So, there's a little bit of a catch-22 with dementia.

Alex : You mentioned earlier the role of palliative care in these cases so I'm interested to hear more about the role of palliative care and hospice, in particular, in caring for some of these patients, particularly those patients who have a prognosis of longer than six months. I'm thinking about hospice here. Until they stop eating and drinking, and then their prognosis is less than six months. What, ethically and in practice, are hospices doing in those situations?

Tim : So, first of all, whatever your prognosis is, if you're thinking about this option, somebody with serious palliative care experience should be involved with you because most people think about this stuff and the answer most of the time is intensifying palliative care. Right? Most people want to know there could be an option, you intensify palliative care, it sort of fades into the background. Again, when people are thinking about this in earnest, make sure they're getting first rate palliation. But then let's say they decide they might want to in the future and then you get down to the "I want it now" situation. Let's say they still don't qualify for hospice because they're not more likely than not to die in the next six months if their disease follows its natural course. Well, what we generally do is, again, we go through this big consent process, second opinions, and then we start the process. Once we start the process, we get hospice involved because then their prognosis is two weeks.

Not all hospices will do this. Our hospices, because we've talked it through with them and they've now had a couple of cases with us or maybe even more than a couple if you look at the community, and so they kind of know what to expect. Sometimes they go to an acute hospice unit. Sometimes they go to an acute palliative care unit. If you go into an acute unit to do it, you've got to get the whole staff thinking it all through and make sure they can support. Can the staff conscientiously object individually? There are a lot of issues doing it in an institutional setting but it can be done.

We do a lot of other really tough things in institutional settings like palliative sedation to unconsciousness. If you can do that, if you can talk that through and think it through, you can talk through and think through this, in my opinion.

Alex : Many of the symptoms that hospice and palliative care providers might be treating here are thirst, confusion, I would assume?

Tim : There's the symptoms before it's getting started that are motivating the decision and then there's symptoms that get added on because of this process. Again, the symptoms beforehand tend to be more on the ... It's not overwhelming pain or shortness of breath. It's not a physical emergency. It's more tiredness of dying. It's more debility. "I can't stand this anymore. I feel like I've gone on way longer than I want to go." Or, "I'm so fearful about the next phase" in the case of dementia. So then, that's that part of the assessment.

Then there's, once they get started, and again, then it becomes thirst in the early going, increasing debility, and potentially confusion.

Eric : How do you manage thirst? That seems like a very tricky one?

Tim : There's artificial saliva. There's different kinds of water solutions. But, the key is, rinse your mouth out and spit it out. Rinse and spit, rinse and spit.

Eric : I'm guessing we're also restricted on some of the treatments that we have. For instance, like pain, you're probably not going to be starting an IV morphine drip because that gives them artificial hydration. Is that right?

Tim : Yes. Well, at least on our palliative care unit, as people are approaching ... In the sicker inpatient units, you have a lot of people who are on a lot of stuff of different kinds. They are suddenly dying and sometimes all the stuff we're giving them to palliate them is prolonging dying. So, we are then super concentrating, talking to our pharmacist about how can we get the key ingredients here in the most concentrated form so we don't prolong this process. Now again, if it's a good process, they're enjoying themselves, then that's fine prolonging it. But if they get to this end stage, we're trying not to do that.

I think it's the same issue. A patient that we allowed this option recently was on a lot of different medications for heart failure and other things. We peeled back a lot of that. We tried to make judgements about which pieces of that were really necessary to keep her comfortable. Then, as she really got sicker, we peeled the rest of those off as well. So, you're really paying attention to the total volume of other medicines and things that you're giving the patient.

Alex : Now, we should talk about depression and other psychiatric illnesses, but I think depression in particular because it's so common and the desire to die is so common. Do you think referral to a psychiatrist is necessary? I mean, in my perspective, clinicians should be able to evaluate for depression and it's not necessary. What do you think about that?

Tim : I think in the majority of cases where chronic psychiatric illness is not part of the puzzle and the patient doesn't have anorexia nervosa, there are certain diseases that would be kind of red flags here that I think a good experienced palliative care person could provide the second opinion. I think a second opinion is very critical. I think an independent second opinion is a really good idea because the potential for countertransference in this things. But then I think if you get a patient whose had long standing depression or any history of anorexia nervosa or those kind of things, then I think getting a psychiatric opinion is a smart idea. Now, finding a psychiatrist who is willing to see such a patient, isn't going to be frightened away by how sick these patients are, I think, can be difficult in some circumstance because you really need an experienced psychiatrist to help you out there. I do think that can be helpful.

We had a patient who, this was not a stopping eating and drinking, this was somebody who was feeding tube dependent who wanted to stop her feeding tube ... long standing serious psychiatric illness. I said, "Look, we'll allow you to stop your feeding tube but, before we do that, what we'd like you to do is to have a trial of what we think is a better anti-depressant than what you're on. If you give us a month or six weeks of doing that and you still want this, we'll support you 100 percent." At the end of a month or six weeks, the patient's feeling good and has no interest in this at all. So, I do think we have to be a little cautious about this particularly in areas of major psychiatric illness. If there is a question of that, getting a good psychiatrist involved is key.

Eric : Another practical question, I can imagine if you go through this process, let's say, again, we go to one end of the spectrum. That person with mild dementia who decides to go through this process. You think they have capacity. They actually do it. What do you do when they die as far as the death certificate? Do you put end stage dementia or is that ... In California, if we go ahead with physician assisted suicide, there's explicitly ... It says you don't put in the word suicide in there. What do you do here?

Tim : Well, I'll answer your question with a question first. It's the old saw, you know. What do we put when a debilitated cancer patient stops being able to eat and drink and dies? What do they die of? Do they die of cancer or dehydration? Do we put dehydration? Well, sometimes we do. But, it's really cancer they're dying of. Again, I don't think it's problematic to put dehydration. I don't think I would put voluntary stopping eating and drinking on the death certificate just because you don't want the family to have to get into a huge thing with an inexperienced medical examiner. How do you tell the truth about these things? I suppose you could put dehydration they died of and then put whatever they're major disease was that was motivating this as the main cause. The immediate cause of death might be dehydration, but the major cause would be their underlying cancer or their underlying whatever the disease was.

Alex : I want to ask, too, about when we should discuss this with patients. There are some who would say we should never discuss it with patients. There are some who would say if the patient brings it up, then we could present this as one among any last resort options after first, of course, exploring the reasons for that request. Then there are other who would say this has to be routinely offered to patients who have a limited prognosis.

Tim : I'm chuckling because I've ... My answer to his makes ... There's nobody who's happy with my answer to this except for me. The answer is, to me, offering this to every patient who is dying is nuts. First of all, there are going to be people who are terrified. "Why in the world are you telling me about this? What are you trying to tell me here?" To me, there are people for whom this is so far out of their realm of desire or radar screen or personal experience that it would be abhorrent to them and why put them through that when they're already going through enough. To me, it's nuts.

Having said that, when people are talking about, "what are my options?", I think definitely this should be discussed with them because so few people really know about it as an option. It actually is an option for a wider range of patients than you often think, particularly those who are really tired of dying. So, I think those folks who are wondering what my options might be, they might prefer to have physician assisted death but it might not be available in their state or they might not qualify. I think this is an ace in the hole. Again, my own experience is that people knowing about this very infrequently activate it but they feel less trapped in the process.

Then you have the people looking and need something now and I think then you're looking at all the options that are there. Even if you're a person who couldn't provide this, I think you could have some debate about whether you should tell people, "Some people allow this option." Again, I'm not sure about that, but it seems kind of rough to have patients have to discover this for themselves because it's a little counterintuitive.

Alex : In terms of specificity, when you're saying patients are asking, "What are my options?", it's not "What are my options now that I have serious cancer." It's, "What are my options because I want to end my life early." It's specifically in response to a request to die.

Tim : That's correct. "What are my options if I want to speed this process up if I'm really getting to the end of my rope here?" Again, a lot of people are interested in this hypothetically just in general. I think if they bring it up, then I think talking about their options is fine. There's a smaller number who really are thinking, "I'm serious. I really need to know because I'm getting near." I think they really need to know what they're options are and which ones you can support. Then, an even smaller number who actually activate this at the very end.

Eric : When I'm thinking about this, from an ethical standpoint, I very much get ... In your paper you do a great job talking about the legal parts, how we should be thinking about this from an ethics part. I'm thinking about those people with mild dementia. If we go even further down the spectrum, let's say you have somebody who doesn't have a life limiting illness who is having the same type of intractable suffering whether it be physical, existential, whatever it is, that motivates these people to pursue this. Is there a line where you say no, this person is no longer eligible for this because they don't have a life limiting illness? I mean, life in itself is a life limiting illness, but when you think about this, how do you think about the ethics of that? Where do you draw the line if there's a line to be drawn?

Tim : So, people draw different lines here. I feel most secure when I have an anchor of a serious physical illness as a big piece of the puzzle because that's what I do. I deal with physical illness. I'm not a psychiatrist. Having said that, I know that a lot of people who want this have often very chronic physical illnesses. They have debility. It's not a cancer. It's not an overwhelming pain or overwhelming symptoms but there are physical aspects to it and they're often extremely debilitated. For them, I think, again, it's a mix of psychic suffering and spiritual suffering and physical, which it always is in everybody, but here a more even mix.

The more it's a more pure psychic suffering or social suffering, then I just feel like, boy, I'm really out of my league here. In those circumstances, if somebody was talking to me in earnest about this, I would say, "Look, I'm not at all comfortable here. We're going to have to get some psychiatrists involved to help us understand this. I don't know that I can participate in this because, at the end of the day, I have to be able to wake up in the morning and live with it, too." Also, I think without the anchor of some serious physical illness and serious physical components of the suffering, we're in a different realm, maybe not a medical realm. Again, maybe there should be other people who are able to do that. I don't know.

Now, again, people don't need ... One of the things that's interesting about this, you don't really need a doctor to do this. Right? There's not a lot medical about it except for the assessment at the start and maybe palliating the symptoms toward the very end. Having said that, I think even if we decided the best way to do this is to have a secret society or maybe even not a secret society, you still want doctors to be involved in that assessment and to help in the process of palliating. There's so many times when people just need to talk about this and they need to not feel trapped. Those are people we can really help and that's what we do, right, most of the time in palliative care?

Alex : Absolutely. We should touch ... My last question is about legal issues and your paper touches extensively on this issue. My sort of overall take is that this just hasn't been tested legally but it's not illegal as far as we know.

Tim : Correct. Correct. Yeah. It's not illegal. It hasn't been tested and it would be really hard to prosecute a doctor for doing this. So, again, because it's really such a high percentage in a patient's own hands, you'd really have to commit the patient to the hospital against their will in these circumstances. Now, if it was a pure psychiatric illness, I think you could make an argument for a trial of that, okay? I might be interested in doing that. I might do that in certain circumstances. But if a person has a serious underlying physical illness, that makes this understandable. It makes it very imaginable. I don't think there's a lot of legal jeopardy in this.

A vigorous prosecutor, some evangelist might go after you, but I don't think the risk is really high.

Alex : My sense is that the courts would be reluctant to interfere in this sort of case because, as you say, so much of this is on the patient in making their own decision.

Eric : Are there other things that you would like to talk about, Tim, before we end with Alex signing a little bit more of the song?

Tim : I think this is something it takes a little while to wrap your mind around. I do think it does provide some options for people who don't have good options. Again, as I imagine myself in those kinds of circumstances, it would be something that would give me solace if I had early dementia, that I could maybe have some choices about something like this. Again, whether I'd activate it or not, I don't know. I do think it is an important option and it's much more patient controlled than any of the other options, which I think makes it good in that regard.

Alex : Yeah. If I could just build on that, I'm deeply ambivalent about physician aid in dying but not nearly as ambivalent about voluntary stopping eating and drinking. I think part of that is exactly what you said. So much of this is on the patient. It's the physician not forcing something on the patient like a tube so they can have nutrition or hydration. That sort of negative act is much more appealing than the positive act of writing a prescription to help somebody end their life.

Tim : Yeah. I agree with you. I do think, though, you really want that same careful evaluation that you would do because you were scared in the other zone with these patients. You don't want it to be too hard but you don't want it to be too easy. You really want to make sure that they're really sure because this ends up at the same place.

Eric : Well, how about we end of a little bit more of the song, Alex?

Alex : Sure. Ends at the same place. Knocking on Heaven's Door. Thank you so much for joining us, Tim. This was a terrific interview and we really appreciate you joining the GeriPal podcast.

Tim : It was my pleasure. [Singing]

Eric : We don't get a lot of GnR time on this podcast, so love that. I just want to thank everybody for listening to the podcast. We'll see you next week. Thanks everyone.
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Tuesday, February 20, 2018

Hypoglycemia in Hospice: A Podcast with Laura Petrillo

For this weeks podcast, we talk with Laura Petrillo, lead author of a recent paper published in JAMA IM titled “Hypoglycemia in Hospice Patients With Type 2 Diabetes in a National Sample of Nursing Homes”. Laura is a palliative care physician and researcher at Massachusetts General Hospital and Harvard Medical School.

Laura's finding should serve as a wakeup call for anyone caring for individuals on hospice living in nursing homes. They found that 1 in 9 nursing home patients with type 2 diabetes experienced hypoglycemia. So take a listen and tell us what you think in the comment section on this GeriPal post.

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

Alex : This is Alex Smith.

Sei : And this is Sei Lee.

Eric : Sei, today again you our-

Alex : What are you, Sei? Are you a guest?

Sei : A ghost. Guest and host.

Alex : Guest and host. You're a ghost again.

Eric : And we have a very special guest with us. Right, Alex?

Alex : Why is it always a special guest? Is it ever not a special guest, Eric?

Eric : It's a very special guest. It's always a very special guest.

Sei : But this guest is more special than others.

Alex : Extra special guest today. Laura Petrillo, who's junior faculty at Massachusetts General Hospital and Harvard Medical School.

Laura : Hey, guys.

Alex : Welcome back.

Laura : Thanks. So glad to be here.

Eric : We got a great topic today around diabetes, hypoglycemia and hospice patients, but before we get into that, Laura, we always ask our very special guests for a song request. You got one?

Laura : Yeah, well, I was thinking, just to stay on topic, maybe Pour Some Sugar On Me?

Eric : Oh, what a great diabetes song.

Alex : So we'll do it? Let's do it. [Singing]

Eric : Great Song! Great song choice, Dr. Petrillo.

Laura : Sweet rendition.

Eric : Let's chat about this article, which I think the song choice was very appropriate for. “Hypoglycemia In Hospice Patients With Type 2 Diabetes In a National Sample of Nursing Homes”, published in JAMA IM in December 2017. Maybe before we go jump into the article, what got you interested in this subject?

Laura : It was kind of an open question when patients go on hospice or start receiving hospice services in the nursing home, what does that care look like? Increasingly, people are dying in nursing homes and skilled nursing facilities and we don't really have a great sense, we have some sense about how pain control is for hospice patients on hospice in nursing homes, but then what are nursing home facilities doing in terms of the management of chronic illnesses once someone goes on hospice? So it was wide open, we didn't really have any clear indication. We all had our stories, our anecdotes, about people being continued on their chronic meds, but wanted to see what the data looked like and happened to have this rich data set of veteran nursing home patients to be able to ask this question.

Sei : This actually started for me, talking with another former colleague, actually current colleague I guess, Bree Johnston. And she talked about how one of the things that was really interesting was the dynamic in hospice where the primary care doctors who are the ones who had been taking care of the diabetes for these patients that are being enrolled in hospice for many years and the idea of undoing some of their long-standing diabetes regimen was actually difficult for them. When I published something with Bree, some of the reviews that we got was how there was no data to support our assertion that this is a problem, that diabetes care in hospice is just hunky dory. What I realized from those comments was that we needed to actually have data to say how is diabetes care in hospice going.

Laura : I was just gonna add the other piece of context is that the American Diabetes Association recently started addressing some of this in their annual guidelines to recommend relaxing glycemic targets, but we don't really have the ability to track those temporal trends to say where guidelines adhere to just knowing that's the direction that the guideline-directed care is going, what actually is happening in real life.

Alex : So all the research that you're gonna talk about today is really pre-guideline?

Laura : It is formally. I think the American Geriatric Society, there's also ... Blanking on the name of a society related to long-term care.

Eric : AMDA.

Laura : That actually have this as part of their guidelines for some time. It wasn't totally new, but it was new to the American Diabetes Association guideline within the last couple of years.

Eric: So what did you guys actually do?

Laura : This is a retrospective cohort study and we had about 20,000, a little over 20,000, hospice patients in between the years of 2006 and 2015 and we just looked at how often patients who were on hospice experienced hypoglycemia. Either blood glucose less than 70 or severe hypoglycemia, blood glucose less than 50, while they were on hospice. We looked at 180 days. We had to use a competing risk of death 'cause, as you could imagine, this was a population that was dying very quickly so we wanted to include people for as long as they would contribute data, but acknowledge that this was another major outcome that these patients had.

Alex : You can't really have hypoglycemia if you're dead, can you?

Laura : Yeah, the ultimate hypoglycemia.

Sei : Very profound hypoglycemia.

Alex : Profound hypoglycemia.

Eric : So what was the median survival for these folks? How long did they actually survive?

Laura : Within 100 days of admission, 83% of patients were dead. So if you look at the survival, if you look at the curves in our graphs, they're all about the hypoglycemia, but they also had the competing risk of death. If you look just grossly at the curves, within about 30 days you're actually getting close to that 80% mark.

Eric : It looks like median length of stay was 10 days. Half of these folks died within 10 days.

Alex : That strikes me as ... In general, for hospice and most hospice in this country's at home and the median length of stay is still somewhere around two weeks, something like that. It makes sense to me that it's probably shorter in CLCs who have a major role in offloading hospitals from patients who would otherwise be dying in the hospital.

Eric : You mentioned this word CLC. I'm not sure most of our audience knows what a CLC is.

Alex : That's a good point.

Eric : Do you wanna describe what it is?

Alex : Who's that for?

Eric : Anyone.

Sei : CLC stands for Community Living Center. It is the VA word for VA-run nursing homes. These are all VA nursing homes attached to VA medical centers.

Eric : Many of these places have dedicated hospice units with dedicated hospice teams that take primary control of the patients. Do we have any data on the cohort that you looked at? Were these dedicated hospice units? Were they just hospice, it could have been dedicated, it could have not been dedicated? I'm just thinking back to your issue of when you were talking with Bree Johnston of it's hard sometimes to change primary care providers, but when the hospice team is the primary care provider, we may need to think this may be the best case scenario.

Sei : We don't have national data on the proportion of hospice units that were dedicated or not, but in general, I would agree with you that this is probably a closer to the best case scenario than what much of the American nursing home hospice landscape looks like.

Laura : Yeah, this was, what? Like 14? How many nursing homes are included in this data, Sei?

Sei : I believe it's a little under 120. I think it's around 114 or something like around there.

Alex : So it's a lot of facilities. And how many patients in your study?

Laura : Well, it's 20,329 hospice patients. The way that we identified hospice patients was actually just by an administrative code. They're coded as either being short stay nursing home patients, long stay nursing home patients, or hospice patients. That was how we identified our patients, but among those 114 or 120 nursing homes how they implement hospice is almost certainly variable, whether just that you switch nurses, whether it's that you go to a different floor. We definitely don't have granular data on that.

Alex : Just so I understand, you then collected blood sugar readings on all these 20,000 hospice patients?

Laura : Mm-hmm. Yeah.

Sei : Yes, sir.

Laura : We didn't collect blood sugars. They were-

Eric : You didn't go out and do finger sticks on everybody?

Alex : You didn't do that? No? For science.

Sei : We were able to link the VA laboratory result data. All VAs have a way of centrally collecting laboratory data and point-of-care data, laboratory data, like finger sticks, is collected as well.

Eric : What did you guys find?

Laura : We found that about one in nine patients ... We took only the patients who had type 2 diabetes and we looked at that duration of time that they were on hospice. We found that one of nine nursing home patients on hospice with type 2 diabetes experienced hypoglycemia with a glucose of less than 70 during that time on hospice and one in 20 experienced severe hypoglycemia, so glucose less than 50.

We also looked a little bit at how often they had glucose testing and on average, patients had about .7 glucose tests a day. If you think about a type 2 diabetic patient on insulin, they typically would be having, what, five glucose tests, six glucose tests a day. This is significantly lower, but it wasn't zero. And in addition to experiencing hypoglycemia, they continued to have the testing through death.

Alex : So what's the big deal here? You got a patient who has diabetes. They've been on insulin their whole lives ... Not their whole lives. Well, it depends on the type of diabetes they have. They've been on insulin for years and now they're reaching the end of their life and do you really wanna have a conversation with them about taking them off insulin after you've talked about all of these other intense things? Maybe it's easier to just leave them on. Check the sugar once or twice a day instead of three times a day and let nature take it's course.

Laura : I think that is a fair approach, but then you also wanna back way off on the amount of insulin that you're using and I think that that's what we're seeing didn't necessarily happen for these folks. I think the fear, if you take someone completely off insulin, in addition to having to have that conversation and belabor the point that they're dying, you have to also contend with the possibility of hyperglycemia, which we also looked at. But you worry that if you let people ride in the 400, 500, 600 range that they're gonna become dehydrated, that they may develop hyperasthmatic states that could be problematic in their own right. I think that's a little bit of the worry. What would happen if we stopped things completely? I think there's a goldilocks middle ground here where you don't necessarily stop things completely. You're not quite as aggressive as you once were. I don't know how much sense it makes to go for an A1C target in this crowd. I think you're thinking more along the lines of what are the general glucose ranges that I'm going for? And maybe you try a new insulin regimen that has backed off the previous regimen and then you see how that does and adjust from there, with the minimum amount of monitoring necessarily.

But the reason it's important is you don't want people to be hypoglycemic. Hypoglycemic feels crappy, so you feel weak, sweaty, confused, shaky, dizzy, all these things. If our goal is quality of life and comfort on hospice, then experiencing hypoglycemia, and I don't know what less than 70 necessarily feels like, but less than 50 almost certainly feels crappy, and we don't wanna do that to people.

Eric : What about the opposite? What about hyperglycemia? These providers are just trying to prevent the opposite, which is really high sugars causing also symptoms. One in 10 patients had hyperglycemia. What was hyper, again? Greater than ...

Sei : 400.

Laura : Hyper is greater than 400, and it was roughly similar. It was one in 10 were experiencing hyperglycemia and we didn't really put a ceiling on that or grade how high the hyperglycemia was.

Eric : Shouldn't we just worry about that just as much?

Laura : The thing that we don't totally have is exact data. No one has done the study to say how do you feel, sir, while your glucose is 60? How do you feel while your glucose is 420? So I don't think we actually know what the symptomatic relationship is. I think we have a slightly better sense that hypoglycemia is symptomatic. I think if I were managing hospice patients' insulin I would try to get somewhere in the middle of those two ranges. I think part of the reason that we looked at hyperglycemia at all is just to say for the patients who are off insulin, is their glucose wild? Are they experiencing glucoses in the thousands all the time? And we didn't find that. We found that there is some hyperglycemia that is part of the routine experience of patients and might reflect some pulling back, but it wasn't like people had pulled back so much that patients were up in the several hundreds most of the time.

Sei : I think, for me, the takeaway here is that diabetes care in hospice patients, like in almost every other part of medicine, the default is always to keep things the way they were. And this is a situation where by the fact that these patients are in hospice, they are going to do worse, eat less, and therefore, we have to actually actively say, "No, what you were on before is probably going to harm you as the days go on." So we actually have to talk about and maybe decrease diabetes medications up front, as soon as they enter hospice, but then as they progress in hospice, actually make a very active effort to modulate and decrease diabetes medications as patients approach the end of their lives.

Eric : Well, I did some research prior to this and just looking at what other people were saying, and I'm not gonna mention names, but one person said, "If medications are not improving quality of life in hospice, it doesn't make sense to use them. There are many newer medications that don't cause lows and control the highs. They cost more, but you don't have to monitor the patients as much." Should we just be changing to more costly medications that are better tolerated?

Sei : I would say, as with any newer medications, the answer is maybe. I think some of the newer medications that they may be talking about are things like SGLT2 drugs. It is possible, but I think with any new medications starting them on a new patient there are idiosyncratic reactions. Patients may actually not like them, and so it's always, I think, hard to think about, oh, this patient is seriously ill, they're being enrolled in hospice, and so we're going to start a new medication on them. To me, feels like that's a tough ... That's something that I think would probably not generally do.

Eric : With a median survival of 10 days.

Sei : Exactly. I would be thinking more about how do we just tail back on what we are already doing.

Alex : Well, let me present an alternative perspective here. Earlier I had said what's the big deal? Why don't you just keep them on insulin? I was being facetious, but let me present the alternative, an alternative approach, which is what the heck are we doing? We shouldn't be testing any of these patients for their blood sugar. We should be taking them all off of insulin, off of all of their diabetes medications. They're dying. They're dying and we've had the tough conversation. Let's just take them off of it, stop checking, stop medicating.

Laura : Here's the thing. When we looked at who was treated with insulin in our cohort, it was the patients who had higher hemoglobin A1Cs to start with and, interestingly, their survival was actually longer, which made me wonder if these were some of the more chronically I'll patients on hospice as opposed to the more precipitous cancer patients on hospice, so maybe more like dementia, high burden of comorbid illness. And so the continuation of insulin actually may have been appropriate given how the survival curves for these patients are slightly different. I think, just to respond to the earlier point about should we start a more expensive medication? That, to me, doesn't strike me as the antidote to self-control. I think you should just still, the message should still just be pull back and find somewhere in the middle, and I don't think that means that you still have to test these patients every day, but maybe do a little bit of troubleshooting initially and then use common sense and as appetite and intake goes down, continue to dial back the insulin.

Eric : And what would you have middle? We're looking at like 150 to 300?

Laura : Sure. Fine.

Sei : Yeah. I think what I was going to say to Alex’s black and white comments is that even though black and white comments make for snappy podcast banter-

Alex : What?

Eric : We would never. We would never go that low, Sei.

Sei : Black and white is generally not a great way of providing patient-centered care. I think what we've shown in terms of both the hypoglycemia and the hyperglycemia means that we actually have to take individual patients one at a time and that we don't want to stop all treatments because I think as, Laura, you mentioned before, being at 500 for days, weeks on end probably is not gonna feel great. And then being below 50 doesn't feel good, so we really want to try to focus on that middle range and really with the long-term focus being on symptoms as opposed to individual numbers.

Laura : And this is something that hasn't come up yet and it just bears pointing out once is we're not just looking at lows and highs, hypoglycemia and hyperglycemia. If you back up in life and think about why people are using insulin or glucose lowering meds in general, it's like you try to avoid the immediate symptoms of hypoglycemia, but long-term you're trying to reduce glucose levels to prevent long-term complications so the microvascular, macrovascular complications. That's clearly not our goal here, so this hyperglycemia is something that's entering into the conversation when you're trying to think purely from the symptom point-of-view, but it's not like those are the two sides of the coin. Generally speaking, throughout life, the two sides of the coin are balancing hypoglycemia and the symptoms of being on insulin with the long-term benefit that you're getting and that's just completely off the table here. I think it's obvious, but it kind of bears saying.

Eric : All right, so three practical suggestions for people who are admitting someone to a hospice unit on how to deal with diabetes.

Laura : I would definitely review their prior medication regimen and their hemoglobin A1C, not necessarily draw a new one, but just see what you're starting with. If it's somebody who has had really difficult to control diabetes and has required insulin for a long time, this would be the person who I would avoid immediately just dropping the insulin off the med list.

The second would be just to then pull back and just acknowledge that things are gonna be different now. That we're aiming for a much more relaxed kind of goal in terms of our glycemic targets. I don't have the prescription to say take your insulin dose and reduce by 50% or anything. Use common sense, but just pull back.

Eric : But it sounds like it's okay to hang out in the 150s, 300s.

Laura : Absolutely.

Sei : Absolutely.

Eric: And a third recommendation?

Laura : And then the third recommendation would be also to back off on monitoring, but if, say, you did continue insulin in someone where you thought they may be continuing to drop off in terms of their intake and you've pulled also back on your monitoring and you start to notice that they're dizzy and confused, that's the time to do the finger stick as this symptom-guided thing. Similarly, if you've stopped insulin or stopped medications in someone and you've noticed that they are experiencing other symptoms of dehydration, then maybe you've gone too far. So just using symptom and patient guided rather than lab-guided monitoring, as we do with pretty much everything in hospice, to sort of help you plan.

Alex : And, Sei, anything to add to that? Maybe about preferences and goals here and how you talk to family members about these medication decisions.

Sei : Yeah, I think the only thing that I would add is anticipatory guidance. And I think this actually dovetails nicely with a lot of other things that hospice already does, about talking to families about what they can expect. And I feel like this is a topic that we can bring up and that's actually going to be probably one of the earlier things. A lot of the anticipatory guidance is what happens in the last 48 hours of life, what are the last 24 hours of life. But this is actually probably something that's going to happen much earlier and you can let people know that because of the underlying disease process, the patient in hospice is probably going to be eating less, and will probably likely need less and less diabetes medicines and that this is normal. So that when that comes, it doesn't have that huge emotional impact of, "Oh, my gosh. Dad's always been on this medicine and now he no longer needs it." Hopefully, this will give everyone a time to process that this is normal and that is actually what they can and should expect.

Eric : And are you guys planning to take a look at this data outside of the VA? The nice thing about the CLC, the VA's nursing home, is it's not a fragmented health care system. Often times, for a CLC hospice, in it the primary team is the hospice team, versus in a normal nursing home is that you have a provider who's taking care of the nursing home patient. Hospice is this additional layer of support and there may be communication issues between the two. And there may be those issues of their primary care provider may not make those changes to their insulin. Any thoughts on next steps?

Laura : I think it's a really ripe area for investigation. We're not personally investigating it now, but I think that it'd be great to replicate and you would definitely wanna stratify by whether management is being guided by someone within the facility versus visiting hospice. I think there's just so many areas to say how is the quality of hospice management going in skilled nursing facilities that it's absolutely worthy of further investigation.

Eric : Well, I wanna thank you for joining us, Dr. Petrillo.

Alex : Thank you.

Laura : Yeah, thank you for having me.

Alex : Good to have you on.

Eric : And our guest host, Sei. Thank you for ...

Alex : Thank you, Sei.

Sei : Thank you for inviting me. It was great to sing.

Eric : How about we end with a little bit more of the song?

Alex : End with a little more of Pour Some Sugar On Me. Is this the high point or the low point of the singing on the GeriPal podcast? I'm not sure. [Singing]

Eric : I just love how Sei's one line is, "Pour some sugar on me," and he's looking at the lyrics the entire time.

Sei : I thought you were gonna go onto red light, yellow light, green light, go. Crazy little woman on a one night show!

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Friday, February 16, 2018

2018 GeriPal-Pallimed Party at the Annual Assembly

by Christian Sinclair (@ctsinclair)

Every February the questions start rolling in, "When is the GeriPal-Pallimed party?" Just so you know and can mark it on your calendars from here to eternity, it has a standing reserved spot on Thursday night at 9pm local time the week of the Annual Assemblies of the American Academy of Hospice and Palliative Medicine (AAHPM), the Hospice and Palliative Nurses Association (HPNA), and the Social Work Hospice & Palliative Care Network (SWHPN) (but just to be clear it is not an official part of either the meeting). And as always, feel free to invite and bring any colleagues or new friends with you as this is not an exclusive crowd.

So for 2018, that means you should clear off the evening of March 15th. We will, of course, be doing our traditional pub crawl starting at Sonsie at 9pm. Around 10pm we will likely be moving on to the next destination. Like always though, these are rough estimates of time, so if you want to know the details, follow the hashtag #HPMparty on Twitter. You can also find information and people talking before, during and after the event on the Facebook Event page.

And new this year, we are adding an event! Get ready for the first ever #HPMparty Escape Room! We are partnering with Escape the Room Boston to reserve three different themed rooms over five time slots from 7:20 to 9:40. (We can open up a later one if the demand is high!) You can always join up with the pub crawl before or after (or not at all, if that is not your thing!). No need to buy anything or sign up for anything if you are just doing the pub crawl.

ESCAPE ROOM DETAILS: Each room holds 8-12 guests where you will work together solving puzzles and clues with excellent communication skills (honed as excellent hospice and palliative care clinicians of course). It will cost $30 per person and we only have around 60 slots, so sign up soon! All of the Escape Rooms are reserved exclusively for us, so you will be working with fellow clinicians and not somebody on their first date...awkward! You will want to get to the Escape room 15 minutes ahead of your scheduled time and it takes 15 minutes by car and 20 minutes by train. Be on time! Once your room starts you will be there no longer than 70 minutes (60 to finish the room and 10 to wrap up). If you are good you’ll be done early!

Example: Reserve the 9:00pm time slot. Leave for Escape the Room Boston at 830 to get there by 845. Do the Escape room at 9p and be done at 10p, take pics and leave!

Ways to follow the party from near or far:
#HPMparty twitter feed
#HPMparty Facebook Event Page

And if you are not already doing it - Follow Pallimed on Facebook, Twitter and Instagram and Follow GeriPal on Facebook, Twitter and your favorite podcasting app.

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Tuesday, February 13, 2018

Palliative care in nursing homes: Podcast with Caroline Stephens

Many in palliative care (including us) have argued that the default care model in nursing homes should be a palliative approach.  Revealing indeed, therefore, to talk with nurse researcher Caroline Stephens about her publication in JAGS where she studied palliative care-eligibility and POLST completion for nearly 200 residents of 3 San Francisco area nursing homes, finding:

  • 70% of nursing home residents were palliative care-eligible, but other than 2 patients on hospice, none were receiving consultative palliative care
  • 99% of residents had completed a POLST, but almost no one remembered filling it out
Listen to the podcast for more, including answer to questions: What does palliative-care eligible mean?  How could they fill out a POLST but not remember it, did they all have dementia?  What is Campbell's law, and does it have anything to do with his soup?  

We're joined on this podcast by Sei Lee, MD, regular guest host and as it happens senior author on the nursing home study, and Lynn Flint, MD, palliative care physician with extensive experience working in nursing home settings.


By: Alex Smith, @AlexSmithMD


Listen to GeriPal Podcasts on:


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

Alex : This is Alex Smith.

Eric : And Alex, we have a couple more people in our room today.

Alex : We have a crowded room today. We're even out of microphones, we're going have to share. We have a guest whose article we're going discuss, and that's Caroline Stephans. She's an Associate Professor of Nursing at the UCSF School of Nursing. And she first authored the article we're going talk about today, "Palliative Care Eligibility, Symptom Burden, and Quality of Life in Nursing Home Residents". Welcome to the GeriPal Podcast, Caroline.

Caroline : Thank you, it's exciting to be here.

Alex : And senior author on that study is Sei Lee, who's a frequent host. And today he's hoguest? Ghost? Guest host?

Sei : I like ghost.

Alex : We also have Lynn Flint in the room, who's Associate Professor of Medicine and palliative care physician here at the San Francisco VA and UCSF. Welcome to the GeriPal Podcast, Lynn.

Lynn : Thank you.

Eric : So we start off with all of our podcasts with a song request. Do you have a song request for us, Caroline?

Caroline : I do. I put Alex on the spot and I asked him to sing the song called "From His Window" by John Smith. It's from a film "The Life in the Years". It's just a beautiful story about a son who had to watch his father slowly deteriorate from Alzheimer's disease.

Alex : We're just gonna do a snippit to start. [Singing]

Alex : We'll stop there and listen to the rest.

Eric : So, what movie was this from?

Caroline : It's a film called "The Life in the Years", and it's just a ... It's part of a community initiative to improve care for older adults.

Eric : The topic that we're gonna be talking about today is your JAMA IM paper that Alex mentioned in the beginning, "Palliative Care Eligibility, Symptom Burden, and Quality of Life in Nursing Home Residents." Which is a really GeriPal topic. We're integrating nursing home care, and palliative care ... How did you get interested in this subject?

Caroline : I think I was meant to go into geriatrics. I was a very young childhood caregiver. Both my parents were in their late forties when I was born. They were part of the World War II generation. My mother was institutionalized when I was six, and my father, who was this World War II generation guy, had to raise this young girl by himself. And he ended up developing dementia when I was in middle school. I was a very young caregiver for a very long time, and then later become the conservator for both of them as they were both institutionalized. And I watched both of them slowly decline from dementia, and also get stuck in the revolving door of the emergency room, because they couldn't get the care they need when they needed it.

And palliative care was in its infancy at the time. This was 25, 30 years ago, and really, no one knew the conversations that needed to be happening about what goals and values and preferences that they had. So, I've since been a clinician, a geropsychiatric advanced practice nurse, and gerontological nurse practitioner. I've consulted in over a hundred nursing homes in three states, and this has just been a passion of mine. So this was a wonderful opportunity to conduct the first prospective evaluation of nursing home resident palliative care needs.

Eric : And what got you interested in actually doing this study? Because, I mean, it sounds like you've been to a lot of nursing homes. Everything is going swimmingly, right, with geriatrics and palliative care in these nursing homes?

Caroline : Definitely not.

Eric : No? Lots of integration of palliative care?

Caroline : No, definitely not.

Eric : No?

Caroline : No, not at all. It's actually been ... My original focus was on vulnerable populations at high risk for poor care transitions. So, people that get stuck in the revolving door of the emergency room, like my parents. You know, they have a simple urinary tract infection, and land in a hospital, and our care system is so focused on ... More care is often perceived as better care, and that's not necessarily the case with older adults.

I'm part of a community collaborative of nursing homes and health systems on trying to reduce emergency room use and hospitalizations, with the Medicare focus on reducing hospital re-admissions. And we found that so much of the hospital re-admissions were focused on unmet palliative care needs. Even as I was talking with this group of 14 nursing homes about, so, how many palliative care-eligible residents do you think you have in your facility? Many of them thought, eh, maybe 15, 20 percent.

Alex : Oh.

Caroline : So this was an opportunity to actually do a deep dive and figure out ... And when I said, "Well, actually," Diane Meyer at Mount Sinai says, "Almost every nursing home admit is a palliative care admit." And there was this gasp in the room as we started talking further. And they said, "Oh, well, they're not all dying. They're not ready for hospice." And I said, "Well, there lies the knowledge gap." And so that's what prompted this palliative care quality initiative. We screened all 228 residents in these three nursing homes, just to see who was palliative care-eligible, what their symptom burden was, what's some quality of life issues that they were facing, and also what the family members were facing.

Alex : And how ... Let's get a little more detail about your sampling. These are three nursing homes in Northern California?

Caroline : Yes.

Alex : Can you say anything more about these nursing homes? Community, academic? What kind of nursing homes were these?

Caroline : These are all community-based nursing homes. One was a not-for-profit facility, part of a larger continuing care retirement community. And then two were smaller for-profit facilities.

Alex : Great. And tell us how you ... You said you screened people to see who was eligible for palliative care. How did you determine which of these nursing home residents was eligible for palliative care?

Caroline : That's a real challenge. There aren't any standardized tools out there, so we pulled from the Interact Toolkit, from Joe Ouslander's great work. And we used a tool called the "Identifying Residents Who May Be Eligible for Hospice or Palliative Care" comfort orders. We feel that this is actually a really conservative estimate, because these are actually getting folks that are really sick. And through interviewing the directors of nursing, and the minimum data set coordinators, as well as reviewing all of the charts for all 228 patients, that's how we came up with our determination of who was palliative care-eligible.

Eric : And can you give us an example, or describe a little bit about this tool? Who are the patients that get identified by this tool? Or what kind of questions are in it?

Caroline : It's based on disease severity, diagnoses of dementia, heart failure, diabetes, cognitive status.

Eric : In general, do we have an idea of how long ... What the prognosis is for somebody who screens positive for this tool?

Caroline : No.

Eric : Or is it needs-based? Like, they have certain symptom needs, and that's how they screen positive?

Caroline : Some of it is symptom needs. Some of it is based on being sent back and forth, having multiple emergency room visits or hospitalizations. Being on dialysis. So, there's a variety of different characteristics that would make someone eligible based on this tool.

Eric : Great. Can we link to it from our website?

Caroline : Sure, that's part of the Interact Toolkit.

Eric : Great. We'll have a link to that from our GeriPal website.

Alex : So, you screen these residents in these nursing homes to see who is palliative care-eligible. How many people were palliative care-eligible? They said 15 percent, or some people and nursing home directors said 15 percent. Diane Meyer says everybody. What did you find with the screening tool?

Caroline : So we screened all 228 residents in these three facilities, and found that 157 of them, or almost 70 percent of them, were palliative care-eligible. And that really blew the group out of the water when we revealed that.

Alex : Right. That's a large proportion.

Eric : Did any of them disagree when you told them that?

Caroline : I think we'd been working on improving quality of care processes, and just discussing the importance of unmet palliative care needs. So when we presented our findings to the work group, they ... I think it resonated. Some of them were pretty surprised, but I think a lot of them were coming around and understanding the difference between palliative care and hospice.

Alex : Yeah, so, 70 percent palliative care-eligible in these nursing homes. At least probably 50 percent of them were already getting palliative care consults. Is that right?

Caroline : No.

Alex : No?

Caroline : None of them were receiving any form of palliative care consults, or any kind of palliative care services.

Alex : Zero? None?

Caroline : Zero. And only two were on hospice.

Alex : Wow.

Eric : So there was absolutely no palliative care going on?

Caroline : The only palliative care that any nursing home resident was receiving was if they were in the hospital, and they were seen by a palliative care consultant in the hospital.

Alex : That's bad.

Caroline : But I think it speaks to the lack of services, and the lack of providers available to provide this service.

Lynn : What does palliative care-eligible, or what did palliative care-eligible mean to you in this study?

Caroline : It meant that they had some form of serious illness, or high-level symptom burden, that required some additional support and conversations about goals, and values, and preferences.

Lynn : So, really, this is a person who could benefit from a palliative care consultation?

Caroline : Absolutely.

Alex : Well, okay, they may not have had palliative care. But at least they all had advance directives or POLST forms completed?

Caroline : There lies a very interesting finding. We found that ... We looked at all of the POLST, the Physician Orders for Life Sustaining Treatment. We wanted to see what was the completion rate of the POLST, and we found that virtually 99 percent of all of our residents who were palliative care-eligible had a POLST.

Alex : Ah, there we go. There's hope.

Lynn: Done.

Alex : Good. That's the end of the story?

Caroline : No, not exactly.

Alex : No?

Eric : It's like you read the article beforehand, Alex!

Caroline : But what was interesting, because we did conduct some interviews with families and residents, just a smaller subsample. And what we found was that very few of these individuals remembered ever completing this bright pink form, or having a conversation-

Alex : Is that because they have dementia?

Caroline : No, because we were even asking family members, and they said, "Oh..." Some of them, when we triggered them with, "Do you remember that bright pink form?" "Oh, I think I remember signing something." But, again, there was just ... It spoke to the fact that a box was being checked, because there was a huge push in California to complete the POLST. But I think the process is getting lost. And so there was this valiant effort to make sure that preferences were being documented. But I'm not sure that the process of actually having multiple conversations, ongoing conversations about goals and values and preferences was actually happening.

Sei : So, is this like, you get admitted to the hospital, and they put this mound of paperwork in front of you, and they're like, "Sign here. Initial here. Check this box. Sign here. Congratulations, you've just completed a POLST." That's sad.

Caroline : Exactly. And what we were also finding is that not only was the bright pink form part of a large admissions packet that was just part of an assembly line of papers that needed to be completed, it was also just speaking to the fact that, oftentimes, these conversations might have actually happened in the hospital, prior to admission to the nursing home. And the palliative care team in the hospital might have spent five hours having a conversation and clarifying goals.

But then, unfortunately, when the person got admitted to the facility, the need to have, again, these regulations, or the perceived regulations to have to have a POLST ... It almost unraveled all five hours of conversation. And that wasn't the norm, per se, but the few instances where there were residents that had a palliative care consult in the hospital ... Sometimes it was getting unraveled when they got to the nursing home.

Eric : Well, it's really fascinating that you mention that, because a couple podcasts ago, we had Kara Bischoff on looking at how we are doing with POLST completion in our palliative care services. And what she found is that we are being consulted for a whole lot of goals and care discussions, but we actually rarely complete POLSTs.

Alex : It's like the opposite for us, right? We're having all these conversations in depth, but we're not completing the POLSTs. The nursing home were getting the POLSTs done, but they can't remember ever having a conversation. So it must not have been a very detailed conversation.

Eric : So, if only we could combine the two-

Alex : Right. Sei's got a question.

Sei : So, I was just looking ... My new favorite thing about this is Campbell's Law. I don't know if you guys have heard about it.

Alex : No.

Sei : It's from a social psychologist from the 1970s, and it states that the more any quantitative social indicator is used for decision making, the more subject it will be to corruption pressures, and more apt it will be to distort and corrupt the processes it is intended to monitor. Now, this is brought up in terms of school testing. So, when you start measuring ... If you use testing to monitor how things are going, that's okay. But if you actually put teachers' pay involved in it, and make it very high stakes, it will be much more likely to corrupt what it is being intended to monitor. And here, it feels like that's the same thing that's happening with the POLST completion forms. If we are just using it to monitor, then its okay. But when actually people are being graded on it, it is corrupting the process of the advanced care planning that it's supposed to do, and thereby actually distorting what we are trying to measure, observe, and improve.

Eric : I guess the question for you, Caroline, is, in California, what is the regulations around POLSTs for nursing homes? Is it that they just have to present it to families? You can't be forced to complete a POLST.

Caroline : No, there's just a huge quality improvement push to have. But some of the nursing homes have taken that to heart - that every single resident needs to have a POLST. And not every single person needs to have a POLST. But-

Eric : I've actually heard that before from other nursing homes. "Oh, everybody has to complete a POLST." And we have to inform them that, no, if somebody doesn't want to complete a POLST, they don't need to complete a POLST.

Caroline : Right. And I think what was fascinating with us is that, when you think our population of palliative care-eligible folks, 47 percent, almost 48 percent of them, preferred full treatment, 28 percent requested selective or limited treatment, and 25 percent desired comfort-focused treatment.

Eric : On the POLST?

Caroline : On the POLST. So when you think about the population that we were dealing with, and almost half of these palliative care-eligible folks were wanting full treatment, and if these conversations were actually happening, how would these numbers have changed?

Eric : I guess, going back to the larger question, the eligibility ... We're talking a lot of about goals of care, but were symptoms a big issue in this group?

Caroline : Yes. When we asked residents, almost 70 percent of nursing home residents in this population, usually or always experienced bothersome symptoms in the last week, and 82 percent of them reported that symptoms were severe, or very severe.

Eric : Do we have any idea of what kind of symptoms they were dealing with?

Caroline : It was ranging from pain, shortness of breath, constipation-

Alex : So, if a resident couldn't respond, then the family responded?

Caroline : Correct. Right.

Alex : So, these weren't nurses rating. These were either patients or families.

Caroline : Exactly. And what was an interesting finding was that the symptom burden was perceived differently between these two groups. Which is not necessarily unexpected, and we know this from the literature. But I think, when you think about 64 percent of families thought that there loved ones usually or always experienced bothersome symptoms in the past week, but it was much higher when the residents answered that question.

Alex : So you had the same group answer the same questions?

Caroline : Right.

Alex : So, patients and their family members?

Caroline : Yeah, and a higher proportion of residents than families also rated symptoms as severe or very severe. So, 82 percent of residents rated very severe symptoms, whereas only 60 percent of families.

Lynn : It's a good thing the surveyors weren't there at the same time.

Caroline : True, true.

Eric : Why is that?

Lynn : Surveyors look at similar metrics when they're coming in and doing their inspections in nursing homes, and a particular measure is pain. And there's a huge focus from state surveyors and other surveyors on how well is pain being managed. And this is sounding very different than the results that I hear of nursing home surveys.

Alex : So, several of us have worked in palliative care and nursing homes, and I'm just interested to hear what your perspective is on palliative care consultations in nursing homes versus primary palliative care in nursing homes. Where do we go from here? Are we ready? Should we have consultative services in all nursing homes for specialized palliative care?

Caroline : Good question, and that's actually the area of my current focus research. We're looking at how we can improve access to palliative care using technology, because we don't have enough providers to do it. And we're actually trying to improve to the primary palliative care skills of the nursing home staff, but also providing Just in Time consultation, and additional supports to families and the residents, using a palliative care consultant like Dr. Lynn Flint here.

Alex : Aha.

Eric : Lynn, are you doing this currently?

Lynn : I will be, yes, providing video consultations with patients and/or families.

Alex : Video consultations?

Lynn : Yeah.

Alex : So how does that work? You wheel in a computer?

Caroline : Yeah, a computer. An iPad.

Alex : An iPad. And then you have Dr. Flint on the iPad talking with a patient and their family?

Caroline : Yeah, and the family can be in North Carolina, they can be at home, or they can be right there at the bedside.

Alex : Wow.

Caroline : Also engaging with the nurse there at the facility, and there's the ability to share documents, so you can bring the POLST up and have a guided conversation. And we’re in the pilot phase right now of testing this intervention, so it's, I think, been really instrumental in helping to clarify thoughts and perceptions and reducing the anxiety of families, because one of our earlier studies found that families, oftentimes, shoot from the hip, when they panic when there's this major change in crisis.

And because that anticipatory guidance hasn't happened in terms of understanding what the natural trajectory of the illness is, and what to expect when someone's dying from dementia, they oftentimes think that they need to send the person to the hospital, because that's the best thing for them. And when they can actually see the power of the visual through the video, and seeing how Mom, who's had three hospitalizations for pneumonia, is really deteriorating, it changes their perception on, perhaps, what they want to do.

Alex : That's fascinating. I imagine that in-person palliative care consult would be the best, and the video consult, you lose something, right? Because you don't have the person there, human, in the room, you lose the opportunity for a therapeutic touch. You still can have eye contact, which is an advantage of video over an audio consult. And certainly you can do it over distances, it's more feasible, this, that, and the other. But, it's probably ... I assume it's better than no palliative care consult. But I wonder how much is lost in that shift from in-person consult to video consult.

Caroline : That's a good question. And we're certainly ... There's really no way to assess that at this point, because there aren't enough palliative care providers to be on-site in the nursing home providing this in-person ... There's certainly advanced practice nurses and physician assistants who tend to be more on-site in facilities who have some background and training in having these conversations.

But having the palliative care expert who can ... We've had some great stories of a resident who was supposed to meet with the palliative care doc, and had to go to dialysis before we could schedule the visit. We actually followed the resident to the dialysis center with the video, and the family member, this was the first time the family member had ever seen their loved one getting dialysis, and to watch them slowly get tired as the process went on. But then, transportation showed up, and we had to end the consult. But, he went back to the nursing home, the doc was able to have a conversation with the family about goals, and values, and preferences, and then the patient patched back in when they got to the facility. So, in some respects, if this had been just an in-person visit, it would have never happened.

Alex : Yeah.

Caroline : So, the flexibility of using technology was really helpful, and you had people in four different locations being able to provide services that wouldn't have otherwise been received.

Eric : Yeah, it reminds me of the podcast we did with Michael Fratkin, who also suggested there ... It's not just drawbacks, but there's some potential pluses, including that it gives this sense of ... Or it gives the control to patients about where they want to have this consult. Is it in their bedroom? Is it in their room in the nursing home? Is it in some other room in the nursing home where they feel more comfortable? Again, giving them that sense of control.

Caroline : I think that control piece is really important. We do have a high level of cognitive impairment in the nursing home setting, and this ends up being a major support for the families who are really struggling watching their loved one die from dementia. Hence our choice of song that Alex sang at the beginning. But, I think what's really important in this population is that, oftentimes, it's very difficult to get families and doctors or providers in the same location at the same time to have these discussions. And it's sometimes held just over the phone, if that. And so, having this ability to have a video visit, and also, families that live at a distance. And I've been a long distance caregiver before, and you feel like, oh, can you just treat them as much as you can until I get there? That's oftentimes, you know, the daughter that's in ... Or there's family conflict. So you have the daughter that sees Mom on a regular basis, who lives here in the Bay Area, and the other daughter that lives on the East Coast. So, when they can both get on the same page, and see Mom, and see what she looks like, and have a better understanding of what the symptom burden that the individual is facing.

Eric : So, we have a lot of different people who listen to our podcast, but let's say there's somebody from a nursing home listening in. What three things, based on the research that you've done already and what you've experienced, what three things should we work on?

Caroline : I think, as clinicians, it's really important to understand who this individual was prior to the dementia, or the serious illness taking over, and understanding what is it ... And helping families understand, what is it that their loved one would want if they were able to step back and look at their current situation? Number two, understanding what's the trajectory of the illness, and what's their prognosis, and how can we best support them. And part of that support is also making sure that we are managing their symptoms properly.

Eric : Good. And the third?

Caroline : And the third, the POLST isn't the end all and be all in terms of being completed. And recognizing that it's a process, it's not just a check box.

Eric : Great.

Alex : Lynn, I think you had something to say in addition.

Lynn : As a nursing home doc, and the reason I sort of raised the survey issue, is that it does make me think about the challenges that are inherent in doing community-based participatory research - that you are uncovering things that constitute areas for nursing homes to improve. And I wonder how you're planning to present these results, and engage with the nursing homes over this.

Caroline : We've actually presented the results to the nursing homes, and it was very well received, and it was just an eye-opening experience. And they have since made substantial changes to assessment processes, and even how they complete the POLSTs, or not complete the POLSTs, if that's the case.

Eric : So, can you give us an example of what they've done differently in the nursing homes?

Caroline : I think one of the things that the nursing homes have done differently is recognizing the fact that, clearly, while many of these people may be there for sub-acute rehab, many of them have a lot of symptom management needs, and many of them, more care isn't necessarily better care. Or putting in a feeding tube in someone with advanced dementia is not necessarily the right thing to do. We've shared the Choosing Wisely campaign, and talking about that. There's been a big shift, and so the hospice referrals have gone up, for instance.

Eric : Good. Thanks.

Sei : I think it's important for us to realize that when we are able to provide better palliative care in the nursing home, one real benefit may be that there are fewer unnecessary, inappropriate ER transitions. But, equally likely is that we'll find this huge reservoir of unmet symptom needs, which will actually require more services, more palliative care docs, more nurses, more nurses' aids, to really take better care of our patients. And until we do the hard work to figure out what those needs are, we really won't know what we'll find, and how we're going to fix that problem.

Lynn : I wonder if you think that these palliative care questions should be added to the MDS.

Caroline : Well, it's interesting. There's actually a question on the MDS that asks, "What's the person's prognosis in six months?" Or “Whether they have a prognosis of less than six months”. And in this population, we found that only 3.8 percent had a prognosis of less than six months.

Alex : As reported.

Caroline : As reported. And I think this is purely a regulatory issue, because if that box is checked, they have to be referred to hospice. And if-

Eric : They have to, or they should?

Lynn : I think they have to make a recommendation, or notify the provider. Correct?

Caroline : Exactly. So if the conversations aren't happening, they don't check that box, even though it's clear that this person has less than six months to live, because that cascade of other services, and the challenges of how hospice is organized, financed, delivered, in the nursing home setting. A lot of families have to make a difficult decision to have to pay room and board, because, you know, and it just costs too much money. So they'll opt to stay on Medicare rehab for the next 20, 90 days, even though, clearly, their loved on is dying. So there's a lot to be fixed.

Eric : Well, thanks for joining us today.

Alex : Thank you, everybody.

Caroline : Thank you.

Eric : Alex, do you want to end with a little bit more of that song?

Alex : Sure. I'm just gonna pick it up and do the chorus here. [Singing]
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