Tuesday, April 18, 2017

Sean Morrison on the Current State of Palliative Care

Today's GeriPal podcast features Sean Morrison, Geriatrician and Palliative Medicine physician, director of the National Palliative Care Research Center and the Hertzberg Palliative Care Institute at Mount Sinai in New York.

We talk with Sean about a new report titled, "How We Work: Trends and Insights in Hospital Palliative Care." This report was co-produced by the National Palliative Care Research Center and the Center to Advance Palliative Care. The report summarizes the current state of palliative care practice in the US.

Key excerpts the podcast (full transcript below):
Sean: I think the biggest finding is that palliative care teams on average are seeing almost 5% of hospitalized patients, but some teams are seeing up to 15% or 16%. And the right number is probably somewhere between 7.5% to 15% depending upon the makeup of the hospital.

Sean: We've seen really a tremendous growth in the number of advance practice nurses that are in the field. We've also seen a growth, you know, an accompanying growth in terms in of the number of physicians. But where we, as you said, we still have a lot of room for improvement is both in social work and in chaplaincy. And it's perhaps not surprising that those are the two disciplines where they can't bill for their services. And I think a large part of the lack of growth in those two areas is because of finances.

Sean: And clearly what I would really like to see is that number of programs who have a board certified physician or advance practice nurse in palliative medicine be at 100% or at least 95%. I can't think of any other specialty where we would accept the fact that, for example, somebody is practicing cardiology and works in a cardiovascular institute but is not board certified in cardiovascular medicine.

By: Alex Smith, @AlexSmithMD

List to GeriPal Podcasts on:


Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: And Alex, who is our guest today?

Alex: Today we have the Dr. Sean Morrison, who is director of the National Palliative Care Research Center and the Hertzberg Palliative Care Institute at Mount Sinai in New York. Welcome to the GeriPal Podcast, Sean.

Sean: Thanks, gentlemen. Good to be here.

Eric: And we start this off with our guest making a request to Alex for a song they'd like to hear.

Sean: Alex, could I have a song?

Alex: So I thought that in honor of you, Sean, who is a Beatles fan and made a wonderful joke about The Beatles and a group called The Beach Boys, I believe. They're some sort of historical group that was important in U.S. history, I understand.

Sean: You have a very good memory, Dr. Smith.

Alex: (laughs) At the recent Foley retreat, Sean was introducing Vince Mor, who is an esteemed palliative care researcher in his own right, and said, "Whenever Vince Mor publishes something, I feel like Brian Wilson (who is the front man for The Beach Boys) did when the Beatles published Sergeant Pepper's Lonely Hearts Club Band."

Eric: So let's hear a little of it!

Alex: So this is "When I'm 64" from that album. One of the few songs I can play from this concept album.

Alex sings “When I’m 64” by The Beatles.

Eric: That was great.

Alex: So we should dive into this report here, Sean. It's sponsored, as I understand it, by both by the National Palliative Care Research Center and CAPC, is that correct? The Center to Advance Palliative Care?

Sean: That is correct. Absolutely.

Eric: And the report is titled, "How We Work: Trends and Insights in Hospital Palliative Care." We'll have a link to the report on the GeriPal website. And really we're looking at trends between 2009 and 2015. Sean, do you want to give us, like, a brief overview about the report?

Sean: Sure, so this is a report that is based upon the National Palliative Care Registry, which is a joint product of the National Palliative Care Research Center and The Center to Advance Palliative Care, which is a voluntary database where programs throughout the United States input information about the structures and processes associated with palliative care delivery. And we've been collecting data over the past 10 years and this report really tracks some of the metrics associated with the growth of hospital palliative care in the United States.

Eric: You know, one of the first big findings that I saw was is that currently in 2015, 4.8% of all hospital admissions received a palliative care consult. And I was just impressed by that number, and per the report that number as increased from 2.7 of all admissions in 2009 to 4.8. Are there other things from this report that really stood out for you when you put it together?

Sean: I think there are a couple things beside that. Obviously as you know the growth in palliative care has been rather rapid in terms of the number of programs since, oh, 2005. And accompanying that has been a growth in the penetration of those programs into various hospitals. So first of all, I think the biggest finding is that palliative care teams on average are seeing almost 5% of hospitalized patients, but some teams are seeing up to 15 or 16%. And the right number is probably somewhere between seven and a half to 15 depending upon the makeup of the hospital.

I think the other thing that we've seen that is equally impressive is the growth of teams that now support a full interdisciplinary team of a physician, nurse practitioner or registered nurse, chaplain, or social worker - and social worker, sorry. And that that was a very small group of programs many years ago but is now increasing also, rather exponentially.

Alex: It's interesting there are a number of glass half-full glass half-empty story lines in here, aren't there? And I think there's tremendous, I was really impressed with the growth of interdisciplinary teams, and yet ... I'm flipping through trying to find it. Somewhere in here it says something like, "Of those teams," yeah, here it is, "Who are without a complete interdisciplinary team, 70% have no chaplain." So there's been tremendous growth particularly in the nurses as part of the interdisciplinary team, but there's still a lot of opportunity to increase chaplaincy support for palliative care teams.

Sean: Oh I agree completely, Eric. And I think one of the things we've seen is, exactly as you've pointed out, is that we've seen really a tremendous growth in the number of advance practice nurses that are in the field. We've also seen a growth, you know, an accompanying growth in terms in of the number of physicians. But where we, as you said, we still have a lot of room for improvement is both in social work and in chaplaincy. And I, it's perhaps not surprising that those are the two disciplines where they can't bill for their services. And I think a large part of the lack of growth in those two areas is because of finances.

Eric: Are there ways that we could address that?

Sean: I think there are a number of way that are addressing that. First of all, I think The National Consensus Project has pretty clearly stated that palliative care needs to be delivered by an interdisciplinary team that encompasses those four core disciplines: medicine, nursing, social work, and chaplaincy. That certainly not all patients need all of those team members, but all of those team members need to be available.

I think the moving that sort of idealistic consensus-driven document into actual practice is going to require things like accreditation. The Joint Commission now, in terms of their advance certification program, you can't have a palliative care team unless you have those four components and be certified by the Joint Commission. That's a step that we need to move forward with. That this is part, that we move palliative care from accreditation to certification.

The other piece that I think will help drive this is research. What clearly has helped promote the growth of palliative care in this country has been research that has demonstrated that it contributes to value. That it improves both patient quality of life and family well-being, at the same time doing so in a cost-effective manner. And I think when we look at, particularly spirituality, there is increasing evidence of the importance of spirituality to seriously ill patients and their families. There are beginning to be data about the impact of poorly addressed spiritual distress in that population, both on patient and on family well-being. And indeed some small data on it's effects on increasing health care costs. So I think we really do need concrete evidence-based data, which I think will exist and can be done, on the impact on both psychological and spiritual well-being on value in health care.

Alex: That's interesting. I think of my own clinical experience, anecdotally, sometimes there are days when we have no chaplaincy support or social work support. And we can do the consult but the quality of the consult is not as good. And I should also mention that, you know, a social worker could do the consult by themselves or the chaplain could the consult by themselves but the quality of the consult is not as good.

Sean: I couldn't agree more. We rely on the support of our social workers and our chaplains, both in terms of our patient care, but also in terms of the care of our interdisciplinary team. And that I don't think we could function as a palliative care institute without their input.

Eric: So the other thing I noticed is the demand for palliative care clinician seems really high. I read that in the report, 64% of palliative care programs are seeking additional staff. I think the nice part of where these trends are going, it sounds like the vast majority, 82% of physicians are board certified in palliative care, but when you get to advance practice nurses it's about half, registered nurses about half, social workers 30%, and chaplains 11. Part of that is that the chaplain's and social worker's certifications occurred within the last decade, but the advance practice nurses, they've had certifications well before even the physicians. But we're still not seeing a high percent of them being board certified.

Sean: Yeah, I mean I think you also put your finger on one of the major challenges for the field. Is that we don't have a workforce now that meets the current need for palliative care specialists across all four disciplines. And it is pretty clear that even though we are dramatically increasing the number of all four core disciplines who are entering the field of palliative care and becoming, as you said, board certified. We are still not going to meet the need. So what are we do about that?

And I think there are three key solutions, or three solutions that we need to think about. The first is we need to think about insuring that every clinician who cares for a person with serious illness has the core knowledge and skills to provide primary palliative care. So that we can use palliative care specialists truly as specialists. So that's the first thing that has to happen.

The second thing that has to happen is, I think we need to begin to use the data that we have to target populations that most benefit from palliative care services. And I hate to say the work triage, but it's really about matching patient need with the knowledge and skills that specialist care provides.

And then I think the third issue, and to me the most important issue, and this is, I think one represented by your blog, is that we need to get beyond the specialty silos that quote, unquote are palliative care and geriatrics, and really need to think about the care of complex, seriously older adults from a population health perspective. And that as long as we continue to think about these within silos of geriatrics, palliative care, palliative medicine, cardiology, we're not going to be addressing the needs of this population. And so the idea that focusing two fields, geriatrics and palliative care, both on the needs of this population, targeting the high-risk individuals for specialist level care and expanding primary palliative care and geriatrics so that we raise the floor or the basement of care for this population of patients.

Alex: That's music to our ears! (laughs) So you know, I wanted to move back to an earlier point, you said that the appropriate ... targeting palliative care referrals is an important step, that was point number two. And that earlier you said that the right proportion of hospitalized patients who receive a palliative care consult is probably between somewhere between 7 and 15%. I'm interested in how you came up with that number.

Sean: I knew you were going to ask me that. So it, I must admit, it's a ballpark estimate.

And it's an estimate based largely on the work of both your group out at UCSF, we call that Mount Sinai West by the way, and the work of Amy Kelly here at Mount Sinai who have begun to look at the size of the population that has one or more serious medical illnesses, an element of functional impairment, and or cognitive impairment superimposed on that. Because I think that is the complex target population that palliative care geriatrics needs to address. And when you look at those estimates, it ranges from somewhere from about 5% of the overall Medicare population, slightly lower in a Medicaid population, and obviously higher in a dual-eligible population. So I think, sort of, the bottom line is that 5%, but the reality is in hospitals you tend to get a higher population or percentage of patients with serious illness being hospitalized.

And so I think that number goes up, and it probably goes up to about 15, 16% and I say that because if we look at palliative care programs that have been in business for a long time, have a pretty extensive program, have good penetration in the hospital, they're seeing about 15 to 16% of the hospitalized population. So that's where my number, that's where my estimate comes from.

Eric: That's great. There's also an interesting piece about readmissions and that 18, 14% of palliative care patients were readmitted to the hospital in 30 days of discharge. And that, by way of reference, all-cause readmissions were about 18%. And that, the palliative care patients we're seeing are likely more complex, more disabled, more cognitively impaired, more frail, more seriously ill than the all-cause. So that 14% is probably, you know, the 18% benchmark is probably not appropriate comparison for that 14%, so actually, we're probably doing pretty well at preventing readmission, which is actually a huge issue for hospitals and health systems.

Sean: I couldn't agree more, particularly since hospitals are now being penalized for unwanted and unnecessary readmissions. And I think what this speaks to is the ability of palliative care teams to identify patient's goals, to match treatments to those goals, and then to create an effective and safe discharge plan that allows patients to be cared for in the setting of their choice. And for most people that is not the hospital, so providing that added layer of support when people leave the hospital and go home, I think helps tremendously in terms of preventing those unnecessary and unwanted readmissions, for example, for a pain crisis, for a breathlessness crisis, because you ran out of medications, because there wasn't enough support in the home to take care of somebody with Alzheimer's disease and related functional impairment. So I'm not actually not terribly surprised by that finding, although some of my colleagues are

Alex: So I got a question. You know, seven years from now when we're revisiting this in our next podcast together, Sean, what do you think the trends are going to look like then?

Sean: That's a really good question. So let me step back and sort of take it from, you know, sort of the beginning of our report and just sort of walk through what I would consider to be the big changes or the big trends. I am cautiously optimistic that what we're going to see is the complete interdisciplinary team moving from 44% up until well over two-thirds of hospitals. I think there's always going to be hospitals that can't support a full team, largely because of their size. That, you know, if you're a small hospital you may not have that type of patient volume, but I would like to see the complete interdisciplinary team number move above 50% and into the 60s and I think that ... I think that will happen. I think that's a realistic goal for us.

I also think that consistent with what we've seen from 2009 to 2015 that palliative, the number of patients who are going to be dying in the hospital, I think, I hope to see decline as we do a better job of allowing people to be cared for in the setting of their choice. I think the number of people we see with cancer is probably gonna, probably going to stay around 20, 25% because that's where, that's the number of deaths that occur because of cancer in this country. And clearly what I would really like to see is that number of programs who have a board certified physician or advance practice nurse in palliative medicine be at 100% or at least 95%. I can't think of any other specialty where we would accept the fact that, for example somebody is practicing cardiology works in a cardiovascular institute but is not board certified in cardiovascular medicine. So that's number two, is the full interdisciplinary team.

And then I think the other big area where I would like to see growth, and I expect to see growth is in the penetration rate. That, again, as we talked about earlier, we don't actually know the right penetration, but we know it's above 4% and we know it's probably less than 15%. So I would really like to see the number, the percentage of patients seen by palliative care teams increasing and then leveling off. Those are the big trends that I think we will be seeing when we're talking again in about six years.

Eric: So I'm just completely impressed with how our satellite campus in New York, otherwise known as Mount Sinai-

Sean: Yeah, yeah, yeah.

Eric: (laughs) Is a really, you know, putting this together and really the great work that you're doing. I really encourage all of our listeners to take a look at this report. There's a lot of detail in there, including for me, one of my favorite graphs was that actually what the team staffing looks like, this core interdisciplinary palliative care team staffing, based on bed size from 2009 to 2015, so less than 150 beds, 150 to 499 beds, and greater than 500 beds. And you can kinda see how you compare, your program compares to these other programs based on your hospital size. Again, really useful information. I think we can talk a lot about, "Wouldn't it be great to have this, you know, full interprofessional staffing," but what this graph reminds me of, is that even a full staff, like some of these are point three of a chaplain or point six of an RN on a team. And what is the right make up for different size hospitals.

Sean: I think that's absolutely critical, Eric, and as I think that you point out at the very beginning of this podcast, one of the things about this report is it gives all of us in the field a pat on the back to show us how far we've come, but it really lays out where we need to go in the future because we are clearly not there yet.

Alex: Great, so I got one last question. How many programs are in this registry and if people want to be included what can they do?

Sean: That's a very good question. We have somewhere between 3 and 400 depending upon what year you're looking at. And if you would like to be included in the registry you can go to www.registry.capc.org and you will come up to the front page where you can register your program and input your data.

Alex: Terrific. Should we end with another verse?

Sean: I would love another verse, Alex, thank you.

Alex: Feel free to join in in the singing.

Sean: I will spare your listeners.

Alex sings “When I’m 64” by The Beatles.

Produced by: Sean Lang-Brown
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Wednesday, April 5, 2017

A Geriatrician Reviews Cicero’s “On Old Age”

by: Jeffrey M. Levine MD, AGSF

As a geriatrician entering the twilight of my career, I look to the philosophers of my field for guidance on how to navigate my own later years. In addition to contemporary texts and journals I turned toward the ancients and discovered a gem in the writings of Cicero, one of the greatest philosophers of the Roman Empire. The work is entitled De Senectute – Latin for “On Old Age.” Cicero wrote this in 44 BC, the year before he was executed at age 63 by Marc Antony’s henchmen for his alliance with Julius Caesar’s assassins and political opposition to the rulers of Rome.

On Old Age is an optimistic discussion of the spirit of man’s declining years, exploring the relationship with nature and outlining strategies to maximize the enjoyment of life. Old age and death are considered natural components of humanity. Unfortunately he does not discuss the point of view of women, a reflection of Roman culture in which the female gender had lower status – unable to vote or hold political office and largely relegated to managing the home.  This flaw, however, does not warrant dismissal of the work.

Born in 106 BC, Marcus Tullius Cicero spent his life intertwined with the politics of Rome, and is considered one of history’s greatest orators. His philosophical writings profoundly influenced Western civilization, including 18th Century Enlightenment theorists such as John Locke, David Hume, and others. Most of Cicero’s philosophical writings were completed after the death of Julius Caesar, when he spent two years peacefully writing in his villa in the ancient city of Tusculum, dictating much of his work to his devoted assistant Tiro, his former slave.

Written in dialogue form, Cicero's friend Cato is chosen as the principal speaker. Dialogues were a common format in Greek and Roman philosophical writings, having been used by Plato and Socrates. Cicero chose Cato because he was a man who reached the age of 84. Cato addresses the inquiries of Laelius and Scipio, two younger men in their 30’s who seek advice on how best to grow old.  Laelius asks Cato:
“(Y)ou will have rendered us a most welcome service… since we hope, indeed wish, at all events, to become old, we can learn of you, far in advance, in what ways we can most easily bear the encroachment of age.”
Cato answers as a stoic – a school of philosophy holding that a wise man should be indifferent to both pleasure and pain, and submissive to natural laws. As such he welcomes the decline of sensual pleasure, replacing it with intellectual and aesthetic enjoyment. Underpinning his answer is that the quality of one’s old age depends upon investments made in earlier years, particularly in one’s health, bodily strength, friendships, and memories of “deeds worthily performed.” He firmly believes that old age has a rightful place in man’s life:
“I am wise because I follow Nature as the best of guides and obey her as a god; and since she has fitly planned the other acts of life's drama, it is not likely that she has neglected the final act as if she were a careless playwright.”
Cato cites old men such as Plato, who “died, pen in hand, in his eighty first year,” and others who were productive into their nineties and early hundreds. He compares old age to a brave and victorious horse who just won an Olympic trophy.

Through Cato, Cicero defines four reasons why old age appears to be unhappy: 1) It withdraws us from active pursuits; 2) It makes the body weaker; 3) It deprives us of physical pleasures; and 4) It is not far removed from death. He then addresses each reason, arguing for enjoyment and appreciation for old age, particularly in the area of intellectual enrichment:
“It is not by muscle, speed, or physical dexterity that great things are achieved, but by reflection, force of character, and judgement; in these qualities old age is usually not only not poorer, but is even richer.”
Cicero however did not know of dementia the disease, referring to memory loss in old age as superstition, as when Cato says:
“I certainly never heard of any old man forgetting where he had hidden his money! The aged remember everything that interests them, their appointments to appear in court, and who are their creditors and who their debtors.”
Through Cato, Cicero advises to live all phases of life to the fullest, guarding against regret. He recommends that all men “…make a proper use of his strength and strive to his utmost, then assuredly he will have no regret for his want of strength…. In short, enjoy the blessing of strength while you have it and do not bewail it when it is gone, unless, forsooth, you believe that youth must lament the loss of infancy, or early manhood the passing of youth. ”

In his discussion of death, Cato first expresses belief in the immortality of the soul, which was placed inside mortal men by the gods to care for the earth. However he concedes the possibility that the soul may indeed perish along with the body, but is still preserved in the sacred memory of words and deeds.

Whether or not the soul is immortal, Cato firmly accepts the phenomenon of death, with old age as the final scene in life’s drama. In his closing words of advice to his young friends he states, “For these reasons…, my old age sits light upon me… and not only is not burdensome, but even happy.” How different is our contemporary culture that abhors old age and death, where marketing and technology promote false promises of prolonged youth and endless life.

The practice of medicine in the Roman Empire was largely based on the Greek tradition of humoral balance, and relied upon herbal medicines, prayers, and some surgical procedures. Of course there was nothing in the way of artificial life support, a phenomenon based upon science and technology that was developed the 20th Century. Modern medicine is largely structured upon preservation of life at all costs – a philosophy that simply does not apply to many of our patients, particularly when it incurs needless suffering in advanced age. We can learn so much from Cicero’s outlook, not only with medical decisions to prolong life, but in how we structure our own lives in preparation for old age, and how we live it from day to day.

* * * * * * * * * * * * * * * *

For a complete copy of Cicero's On Old Age click here.

For a good reference on the life of Cicero Click here.  

For an engaging novelized trilogy on Cicero's life see Robert Harris's books entitled Imperium, Conspirata, and Dictator.

For an excellent introduction to the topic, see The Cambridge Companion to Greek and Roman Philosophy, edited by David Sedley.  

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Tuesday, April 4, 2017

GeriPal Podcast: Laura Hanson on Improving Advanced Dementia Care in Nursing Homes

Today's GeriPal podcast features Laura Hanson, Geriatrician and Palliative Medicine physician at the University of North Carolina, Chapel Hill.  Laura discusses her recent JAMA RCT of a goals of care intervention for nursing home residents with advanced dementia.

Here is a link to the decision aid, including video.

Key excerpts from the podcast:
Laura: That is followed by an in-person discussion. I want to emphasize that, because I think that a video decision aid alone without anchoring to the clinicians who are actually delivering care is not going to be as powerful.
We did have a number of family caregivers who said, "I can't choose between function and comfort." That, I think, tells us something about what families want from us and what they're hoping for for the care of somebody with late stage dementia. It allows us to think about the things that we do that might actually cause functional deterioration, like overmedication, or prolonged hospitalization with time in bed that then can turn around and result in a functional impairment that otherwise wouldn't have occurred. I take that to heart as a clinician.
We conducted this study in a time period and in a location when population health was not a priority. It's important to recognize that moving forward with the emergence of population health and with new quality standards for nursing homes that will penalize them for readmissions, as well as hospitals. This is a high risk, high transfer population, and there may be new incentives for physicians to become more involved in, at least, the transitional care of this advanced dementia population. 

By: Alex Smith, @AlexSmithMD

GeriPal Podcasts can be found on:


Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: Alex, who is our guest today?

Alex: Today, we have Laura Hanson, who is Professor of Geriatric Medicine and Palliative Care at the University of North Carolina, Chapel Hill. Welcome to the GeriPal PodCast, Laura.

Laura : It is an honor to be here in this beautiful place.

Alex: Laura, we usually ask our guests to start off with a song. Do you have a request?

Laura : I have a planted request for Carolina In My Mind.

Alex: Planted!

Eric: We would never ...

Alex: We'd never ...

Eric: Never!

Alex: Never, never. For our listeners, let's just be clear, that's fake news! Maybe ...

Alex: Maybe there was some discussion.

Laura : Let's be fair. One of my favorite songs when I'm traveling away from home.

Alex: That's good. Carolina In My Mind by James Taylor.

Alex, Ericand Laura sing “Carolina in My Mind” by James Taylor. 

Alex: Nice!

Laura : Thank you.

Alex: That's great. I think you're the second guest to sing along.

Eric: Yeah.

Alex: That's great. We admire your courage.

Laura : Oh, I thought it was a requirement.

Alex: No, no. It should be. Maybe going forward.

Eric: We only tell people after.

Laura : Oh, got it, got it.

Alex: Today, we're going to talk about the study that you published in JAMA. I think this came out online last year, but in print this year, is that right? Something like that. Published online November 28th, but post ... Anyway, this really terrific study in JAMA, “Effect of Goals of Care Intervention for Advanced Dementia, Randomized Clinical Trial.” To dive into this study, maybe first, could you tell us a little bit about why there was a need for a study like this?

Laura : Interestingly, the idea for this study came out of a previous study that I did, trying to address decision making about feeding in advanced dementia. When we did that study, where we were talking about a specific issue in advanced dementia, a lot of the people that we worked with, family caregivers and nursing home care providers said, "Please, do something about goals of care, because we can't really talk about feeding options, if we're not talking about the big picture."

Eric: What did you do in the study?

Laura : In this study, what we did was spend a huge amount of time in nursing homes with family caregivers and with people with advanced dementia. We identified a group of nursing homes in North Carolina that were willing to let us come in and do research there. We randomized those nursing homes into intervention and control sites. The intervention sites got a video decision aid about goals of care in advanced dementia, followed by a structured care plan meeting with the nursing home staff and the family caregiver, to talk about goals of care and how it might affect the treatment plan. In the control sites, we had a control video and a regular care plan process.

Alex: I want to dive into this idea of this video intervention a little bit more, because I think this is fascinating. There wasn't, I think, a whole lot of detail, as you'd imagine, in the written text about what that video intervention was about. You described what it was about, but there wasn't a lot of meat on the bones about what is this intervention? Could you tell us a little bit more about what the intervention consisted of?

Laura : Sure. We tried to create a technological intervention that would work in nursing homes. For those of you who don't work in a nursing home environment, this is an environment where Wi-Fi is not available. This is an environment where many healthcare providers, especially people like nursing assistants or frontline nurses are told, "Don't get on the computers."

What we did was develop a short, 18 minute video that could be delivered on several different platforms, so that it would be flexible enough to be available in the nursing home setting. In that video, we talk about what dementia is. We talk about what goals of care are. We talk about how choosing a goal of care is essential to frame a treatment plan. We tell three stories. We have three stories about three people with advanced dementia whose families chose a different goal in order to guide care and how those stories unfold.

Then we also talk about the role of the family decision maker for whom this video is really intended, and the challenges that they might face as they attempt to speak in the voice of the person with dementia in making these hard choices. That is followed by an in-person discussion. I want to emphasize that, because I think that a video decision aid alone without anchoring to the clinicians who are actually delivering care is not going to be as powerful.

Alex: Right. That's so helpful to have a clear picture there of what the content of the video is. When you say, "There are three stories," I could image that one would be a comfort-oriented approach, exclusively. One might be some sort of limited interventions, and one might be focused on prolonging life as much as possible. Is that the idea of the three different pathways there?

Laura : That's, basically, the idea, except for that middle pathway, which some people call limited intervention, and for those of you who use a POLST paradigm, that's often the language that's used. We found that language when we were developing the video to be too negative. It sounds like taking away, which is something that I have learned not to do in decision making with family caregivers. Instead, we described that middle pathway as a focus on function. Being lest concerned about life prolongation, perhaps somewhat less concerned about comfort, but concerned about supporting the function of the person with dementia.

Eric: I had a chance to actually watch the video and the way it's presented, the middle one, the function one sounded quite reasonable ...

Laura : Attractive?

Eric: ... for most people, including potentially those who want to focus more on comfort. You can imagine that it's attractive. "Oh yeah, I'd love to see my loved one regain some function." For people with advanced dementia, how realistic is that pathway? What did people actually choose?

Laura : Interestingly ... I appreciate your characterization of that middle pathway, and I do think that there are a lot of families who are interested in something like a middle pathway for dementia care, but the reality is that two thirds of these families chose comfort right upfront. They chose comfort as their top priority. By the end of the study, it was a significantly higher number, more than three quarters choosing comfort as their top priority.

We did have a number of family caregivers who said, "I can't choose between function and comfort." That, I think, tells us something about what families want from us and what they're hoping for for the care of somebody with late stage dementia. It allows us to think about the things that we do that might actually cause functional deterioration, like overmedication, or prolonged hospitalization with time in bed that then can turn around and result in a functional impairment that otherwise wouldn't have occurred. I take that to heart as a clinician.

Alex: I wonder for our listeners, is it possible to view this video?

Laura : It is.

Alex: Is it available online?

Laura : It is. This was developed with your tax dollars and is freely available. It's currently available on the UNC Palliative Care website. People can look at it there. It's available on Vimeo, you can just search Dementia Goals of Care. It's available, or it will be available, I should say, it's going through the clearing process now on the Ottawa Health Research Institute website. That is the largest clearinghouse for decision aids anywhere in the world.

Alex: We'll have a link on the GeriPal Podcast to the video. The decision aid ... the structured interview or what happens after the video, is that available?

Laura : That will be available. It is going through the Ottawa process. Once it goes through the Ottawa process, it will be posted on their website. It's a guide for a structured decision that, when you do see it, you will think is quite simplistic, but basically asks that the conversation begin with a description of the person with dementia themselves and the family's understanding of their health state. Then a discussion of the goals options, followed by a discussion of the implications for treatment plans, so fairly straightforward.

Eric: Did it work?

Laura : We think it did. The intervention was very exciting to deliver, very engaged family caregivers with it. I take that to heart, because it has be acceptable and interesting for them. Basically, what we found in terms of the outcomes, our primary outcomes were focused on the quality of communication and decision making itself. No matter what is chosen, is the experience of communication improved by this intervention? The families said that it was. That overall, the families with the intervention experienced a better quality of communication with nursing home providers, and specifically experienced better quality of communication about end of life concerns.

The families in the intervention group also felt that they and the nursing home staff were in stronger agreement on the primary goal of care that was guiding the treatment plan, which is helpful. It impressed me, because there were still, in the control group, a significant group of people who felt that they weren't on the same page. That's pretty poignant to feel about someone you love who's being cared for in a nursing home.

We also found some downstream effects of it. Some of them surprising. Some secondary outcomes that we didn't particularly expect to affect. One was that we saw in the chart reviews, there was actually more palliative care content to the treatment plans for the intervention group, so the nursing home staff actually did more in modifying treatment plans than we expected.

Alex: What was included in the palliative care content?
Laura : Palliative care content for us, which is something that I had to develop a measure for, is asking if 10 different domains of palliative care are addressed anywhere in the treatment plan. Five of those domains are specific treatment decisions that are relevant to dementia care and five are domains of palliative care, like physical symptom management, emotional distress management, spiritual caregiving. We saw an increase in that content.

The more downstream consequences were that we saw the intervention participants actually more frequently had a MOST form, which is our version of the POLST completed. We'd never ever in the intervention mentioned POLST. We gave no instructions in that realm, but the goals of care decision aid fairly easily tracks. We had a number of the nursing home staff who were in the intervention sites say, "Hey, we could use this in order to complete MOST forms with families." Then we also saw a reduction in hospitalization for this population with the intervention, which again, we didn't particularly expect, but we're excited to see.

Alex: And yet, when Ericasked, "Did it work?" You said, "We think it did." Are there some aspects in which the study surprised you and ways in which it didn't work?

Laura : Some of the things that were not affected by the intervention were in the areas of general satisfaction with care and the management of symptom distress. When we asked families, "If either of those things changed or improved with the intervention, we didn't see anything." That lack of effect is something that I'm now thinking about a lot in research moving forward. Thinking really seriously about how we can help people who have advanced dementia actually experience better comfort and experience better care for symptom distress. I think that's an area that's really untapped in dementia care.

Eric: Who was actually involved in these conversations? Because in many nursing homes, physicians are not often present.

Laura : That was true here. The leadership in nursing homes is just what it sounds like. It's nurses. Nurses, very typically, led these conversations, and social workers were not far behind, very much involved. It's very powerful, if a nursing facility also has an advanced practice provider, so a nurse practitioner, or a physician assistant who's on site. If they were, they would typically be involved, but that's the minority of nursing facilities.

Physicians, I'm sad to say, were absent. We could not, despite a concerted effort in the study protocol, to notify physicians when their families were participants, to notify physicians when these meetings were taking place. I have to say I know some of these physicians personally, but for them this is outside that standard of practice so far that it was not possible to change that. We didn't predicate the intervention on physician participation, but that is another area for our future work. Thinking about how physicians can become more involved.

Eric: Were they involved in the most sightings?

Laura : Yes.

Eric: Somehow this got back to them.

Laura : That is correct. That's often how nursing home care works, where nurses are frontline. If nurse practitioners or PA's are available, they're also frontline. Decision making takes place and physicians back that decision making up.

Alex: Reminds me of hospice. Nurses, frontline say, "I need this medication, can you sign these prescriptions?" Yes, doctor signs them. They're back line on the front lines. It's interesting, because there's two sides to the physician involvement piece here. On the one hand, they weren't involved, and there may be opportunity for an even bigger effect, if they were involved and were able to communicate effectively.

On the other hand, this is real world, because most physicians aren't involved in nursing homes. If you had all of your physicians gangbuster involved, then it might have raised questions about how generalizable is the study? Maybe these are some handpicked academic affiliated nursing homes, or something that are quite different from other nursing homes around the country. There's some interesting angles to that aspect.

Laura : That is true. We designed it to be delivered in real world settings and these are not academically affiliated nursing homes, for the most part. They represent a very typical spectrum of nursing homes from some that are exceptional and have a strong investment in dementia care, to many that are very typical, ordinary nursing homes and match national standards, but don't go above that.

I do want to mention one other thing about the physician involvement, though, that's interesting to think about for the future. We conducted this study in a time period and in a location when population health was not a priority. It's important to recognize that moving forward with the emergence of population health and with new quality standards for nursing homes that will penalize them for readmissions, as well as hospitals. This is a high risk, high transfer population, and there may be new incentives for physicians to become more involved in, at least, the transitional care of this advanced dementia population.

Eric: I can imagine that brings up that tension, as far as what outcomes we should be looking at. Your primary outcome what the quality of communication. I think, for healthcare systems, what they're probably more interested in is potentially satisfaction, but realistically transfers to the hospital care that is expensive and may not offer a whole lot of benefit to individuals with advanced dementia. How should we think of when we're looking at these studies, what outcomes are the most important to look at?

Laura : Wasn't it nice that we had an impact on several different outcomes? That was helpful. That being said, I have chosen to put shared decision making front and center. I think that's really essential for people who do research in this area, as well as for people working in clinical practice with people who have later stage dementia. If we don't get the shared decision making right, we cannot impact hospitalization, at least not in a way that's healthy and sustainable. Because if we don't get the shared decision making right, then what we're doing is simply working out a mechanism to, apparently, take something away from people with advanced dementia.

I would argue that the real goal is to anchor the care of people with advanced dementia in nursing homes with higher and higher quality care there, so that the idea of an emergency department as the only source of relief from distress is eliminated from the repertoire. Shared decision making has to take place first, before those kinds of choices can be meaningfully made. It's not to say it's the only outcome that matters, but it has to be part of the package.

Eric: This is terrific. Taking a step back, bigger picture. What do you think is the direction that nursing homes need to move in order to make a palliative approach to care the standard approach in nursing homes for residents with dementia? If you agree with that statement.

Laura : I do agree with that statement. My wishlist is very long.

Eric: Right.

Laura : I'm a little worried about my answer running over time for this podcast. I think one of the most essential priorities ... and I just mentioned this, is to enrich the nursing home environment itself, which is both the home and the primary source of healthcare for most people with late stage dementia in the U.S. To enrich that environment with palliative care expertise. There are a lot of different ways that we might think about doing that. One way is to have palliative care consultation that's robust and readily accessible in that environment. Very few places anywhere in the United States have that yet, but there are places that are working on that.

Another way to do that is to make palliative care quality metrics more of a focus for how nursing home providers are rewarded and supported. Some of that's starting to occur, as well. Then the third way to do it is to think about really lifting the skillset in the nursing home staffing profile, so that can be done through training, although that's fraught, because the staff turnover rates in many nursing homes are well above 50% per year.

Eric: Wow, that's high.

Laura : It's really ... it means that education, literally, exits the building.

Eric: Yeah.

Laura : Training built with systems changes may be successful. I think more viable is to actually place a higher level practitioner in that environment. There's a good amount of research that says, when advanced practice providers are available, people who can do advanced care planning, who can do more skilled medical assessment and who can do prognostication, which is unique to advanced practice providers and physicians, you get a lot of the outcomes that you want.

Eric: Yeah.

Alex: Let's say I'm a nursing home, I'm listening to this podcast and I really want to try out this video. Do I have to wait for the Ottawa ...

Laura : No. No.

Alex: Give me a couple of steps of what I could do.

Laura : Yeah, a couple of options. One is to use it directly off of Vimeo right now. That's perfectly fine and available. Another is that people can contact me directly, and because of the difficulty of delivery of even video across the internet in nursing homes, I'm happy to send ... oh, this sounds so old-fashioned, a CD-ROM, a DVD, a paper copy.

Alex: Betamax.

Laura : Exactly. Exactly. Because that may be, frankly, what education specialists in nursing homes need in order to be able to use this material, and we're happy to provide it.

Alex: Wonderful.

Eric: That's great. Did you work with the other folks who are making advanced care planning videos around the country, like Angelo Volandes?

Laura : I am doing some work with Angelo now, but I didn't at the beginning of this project. The interesting thing really is the technological limitations in nursing homes and wanting something that was very low cost, very low health literacy, which is very important in the research environment. It's another long discussion, but basically, in the nursing home environment, you need to pay a lot of attention to low health literacy in order to be successful, and wanting something that can be developed in a way that it could be delivered in this very simple way. Yeah, now Angelo and I are collaborating and doing some work together, which is exciting.

Alex: What's the next step for this research?

Laura : What we're doing now is actually taking to heart some of the failed outcomes, the area of lack of effect on symptom distress. I'm working on a model project of dementia palliative care for individuals with late stage dementia who land in the hospital. We're testing that model to see if we can have some impact on some of the outcomes that we were not able to affect when we focused exclusively on goals of care as our primary intervention.

Eric: Great.

Alex: Great.

Eric: Any other questions?

Alex: Should we have another verse?

Eric: That sounds wonderful.

Alex: Let's do the one with the word dying in it.

Alex, Eric and Laura sing “Carolina in My Mind” by James Taylor.

Produced by: Sean Lang-Brown
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Saturday, April 1, 2017

Make April Fools Great Again

In a shocking turn of events, early this morning President Donald Trump posted the following tweet:

In what can only be described as utter chaos inside the beltway right now, what appeared to be an impromptu press briefing (although likely long planned out), the White House Press Secretary, Sean Spicer, elaborated on the joke: “We nailed it!  Period”

Apparently, Paul Ryan was also in on the joke, as he was quoted as saying: “You should see the looks on your faces.  Priceless! Do you really think that we want to repeal the ACA and make millions of people lose their insurance?   For god sakes, we are the party of family values.”

Pundits from across the political spectrum are hailing the impressive stunt.  Sarah Palin was overheard saying “I thought my April Fools’ joke of Death Panels was good, but this.  This was impressive.”

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Tuesday, March 28, 2017

Muriel Gillick: On Being Old and Sick in America's Health Care System

On this weeks GeriPal podcast, we have invited Muriel Gillick to discuss the state of our current health care system for older adults as they journey through our health care system. Dr. Gillick is a professor of medicine at Harvard Medical School, geriatrician, and palliative care clinician. She is also an author of multiple books, including one that will be coming out in October called "Old and Sick in America: The Journey Through the Health Care System."  Here is a link to an article about blacklisting performers by the House Un-Amarican Activities Committee  in the 1950's (including Pete Seeger).

GeriPal Podcasts can be found on:

by: Eric Widera (@ewidera)


Transcript of the podcast:

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

Alex: This is Alex.

Eric: And Alex, who's our guest today?

Alex: Today, we have Muriel, who comes to us from Boston, where she's a professor of medicine at Harvard Medical School. She's a geriatrician and a palliative medicine physician. I had the pleasure of learning quite a bit from Muriel during my residency in Boston. She's well-known author. I really enjoyed her book "The Denial of Aging and Other Dangerous Fantasies." She's also a celebrated author in major medical publications such as the New England Journal around tube feeds and other issues. Welcome to the GeriPal Podcast, Muriel.

Muriel: Thank you, Alex.

Eric: So, Muriel, we usually start off by our guests giving Alex a song they'd like to hear Alex sing.

Muriel: Sure. I thought maybe Alex could try Pete Seeger song, my old folk hero from my childhood.

Alex: Great. This is "Get Up and Go."

Alex plays ìGet up and goî by Pete Seeger.

Alex: Perfect song for geriatrics. How about that? I didn't know there was such a song. Muriel, can you tell us more about Pete Seeger and why you chose that particular song?

Muriel: Pete Seeger was a man who always stood up for what he thought was right, and he always came up with a tune and words to express what he thought made a difference. He kept on doing that until he died in his 90s, still married to the love of his life. Both personally and professionally and politically, I think he's a tremendous role model.

Alex: Mm-hmm (affirmative). Muriel, you have a new book coming out this fall, is that right?

Muriel: That's right.

Alex: What is the title of that book?

Muriel: It's called "Old and Sick in America: The Journey Through the Health Care System."

Alex: Do you want to tell us a little bit more about what the book is about?

Muriel: I want to understand kind of from the bottom up why our system is the way it is. Instead of talking about economic theories and incentives, I start with the experience of patients. My focus is on the oldest and sickest and frailest of people. I talk about what happens to them when they get sick, whether they go to the doctor's office, where most medical care begins, whether they go to the hospital, where most older people end up at some point along the way, or whether they go to the skilled nursing facility for rehab. They have certain kinds of typical experiences, and so I tell a lot of stories about the kinds of experiences that people have and then seek to explain why things happen the way they happen. We love to believe that it's because everybody is working in the best interests of patients, and there's a little bit of that, but sometimes the interests of device manufacturers and drug companies and physicians and hospital systems and the FDA and Medicare all conspire to shape the experience that people have. If we want our patients to have a better experience as they journey through the health care system, we need, I believe, to understand the way all these players interact.

Eric: This relates to a story from your book you were just telling us about. It was a patient named Barbara. Barbara was a 70-year-old woman who developed symptoms of heart failure and went to her primary care doctor expecting to be given more medication for her heart failure. Instead, she was sent to the hospital for observation, because home care would've been too difficult to organize. At the hospital, she wasn't able to see her own doctor. Instead, she saw a hospitalist. Can you tell us more? Why was that?

Muriel: In part because it was very useful for a primary care doctor, as much as they at some level like to see their patients in the hospital, they also find it a monumental nuisance and inconvenient and disruptive to their schedules to have to go to care for hospitalized patients, and they're quite happy to have somebody else take care of their sickest patients. Hospital administrators found that it's very efficient to have hospitalists and may save them money.

Alex: Just to summarize what happens next with Barbara, the hospital referred her to an academic teaching hospital, though she might need dialysis or a stent, even though she previously told her doctor she didn't want either of those things. Because it wasn't in her medical record that they had, they actually sent her to this new hospital?

Muriel: As it turned out, this woman had had several meetings with a nephrologist and had decided unequivocally that she would never ever undergo dialysis. The other reason that the physicians at the community hospital felt she should go to the downtown teaching hospital was she might need a cardiac catheterization, even though she had had a cardiac catheterization several years earlier and a stent placement, and had decided that never again would she undergo this procedure. However, they were very forceful in the emergency room, so she was sent to a teaching hospital. There are a variety of reasons that had nothing to do with what was in Barbara's best interest that she ended up not at the community hospital, certainly not at home, in the teaching hospital and with a hospitalist caring for her.

Alex: And it doesn't stop there. Barbara was having a hard time in an unfamiliar, new teaching hospital environment, and then was given an antidepressant. Tell us more about that.

Muriel: She was pretty distraught to be in the hospital, and so they started her on an antidepressant. Two days after she'd been admitted to the hospital, when her son came to visit her, he was horrified to find his usually very organized, coherent mother ranting and raving and then whispering to him that the woman in the bed next to her was a spy.

Alex: Oh, boy.

Muriel: He spoke to the physicians caring for her and found out pretty quickly that she was on a variety of medications, one of which was an antidepressant, and he commented that, "Oh, she'd been on that antidepressant before and it had made her wacko the last time." But the team in the hospital didn't know about that. Why didn't they know about that? They didn't know about that because they had an electronic medical record and her doctor had an electronic medical record, but those two systems didn't talk to one another. But because she was confused, the house officer, who's trying to be a good doctor, has got a whole battery of tests. They got blood tests, they got a chest X-ray, they even got a head CT scan. They got a urine test. Why did they get all those tests? In part because they had the capacity, the technological capacity to obtain those tests. Some of what was driving what was done when Barbara got confused was technology, the interest that physicians have in providing technology, the interest the device manufacturers have in selling their machines to hospitals, the interest then in hospitals using the equipment that they have.

Eric: This reminds me of a quote that I think I heard just last where somebody was saying, "We never knew health care was so complex." I can see things are not going well for Barbara, and I'm guessing things are not going to go well for her from here on out as well. How do you deal with this complexity? There's all these interests, including the interests of patients and family members, who sometimes demand high-tech sometimes low-touch care. What is the solution to all this?

Muriel: There's no simple fix. In this particular case, I think that there is one factor that stands out above all the others as playing a major role in the experience that patients like Barbara have, and that's actually Medicare. Medicare has the capacity to influence, to some extent, all these different players that I've been talking about. Many of the things that Medicare has done have been beneficial. Sometimes things haven't worked out quite the way we planned. First of all, the creation of Medicare itself. At the time Medicare was instituted, a little over half of older people had health insurance. That meant that once Medicare was introduced, you had a vast increase in the number of hospitalizations of older people. People came in to have surgical procedures that they had been putting off or neglecting or just not doing because they couldn't afford them. The first way that Medicare made a difference in the lives of older sick patients is by enabling them to have effective treatments.

The other really dramatic way in which Medicare influenced what happens to older people when they get sick is through prospective payment. That is, initially in the early days, doctors and hospitals just billed and Medicare paid. This proved to be a rather costly way of doing business. Medicare came up with the idea of saying that hospitals will get paid a fixed amount based on the particular conditions. Basically, if you came in as my patient Barbara did with heart failure, you were expected to have a, let's say, five-day hospitalization, and that's how much Medicare was going to pay the hospital. If you managed to discharge Barbara sooner, you made a profit. If you kept her longer, you lost money.

Alex: I think this is part of the reason that palliative care has experienced explosive growths in US hospitals. Because the data is fairly clear that palliative care shortens lengths of stay.

Muriel: Mm-hmm. The other effect that it had was that it basically created the skilled nursing facility. When I was a resident, there were nursing homes and those were places that people went to live for the duration of their lives. There was basically no such thing as short-term post-acute rehabilitation. That was a whole industry that was created by the Medicare program introducing prospective payment, because our old, sick, frail patients might not need intravenous Lasix anymore or intravenous anything, but as we all know, they might be de-conditioned and still a little delirious and certainly not able to make it at home on their own, so they have to go somewhere. But if they stayed in the hospital, they would be outstaying their DRG determined allocation of time, so what better thing to do than to put them someplace else. Hence, we have the skilled nursing facility. That's just another example of a really profound way in which Medicare influenced the experience of our sickest, frailest patients.

Eric: Hospice too.

Muriel: Medicare created a hospice program in the 1980s. Yes, that was another legislative innovation, and that to a large extent changed how people die and where people die. Now well over 40% of Medicare patients who die are enrolled in hospice, at least at the time of death.

Eric: Do you know how they came up with six months as the eligibility?

Muriel: I don't.

Eric: It sounds like we have a very complex system that we're dealing with right now. Your case of Barbara is really highlighting how complex it is with lots of potential different interests. What is my question?

Alex: What's an individual to do? What can we do? Do we throw up our hands and say "It's too complicated"? How do we effect change?

Muriel: There are in principle a number of changes that could make a difference that involve changes in the Medicare program that could ripple through this entire system. Medicare pays for almost all of residency training, either through direct allocation of money or indirectly to hospitals, subsidizing them for the costs of trainees. Even though Medicare continues to pay the lion's share of the costs of residency training, there is absolutely no requirement created by CMS, the Centers for Medicare and Medicaid Services, about what residency training has to include. Medicare without being tremendously prescriptive and saying you must have this curriculum, you must do that, could say you must make sure that your residents have competence in communication skills, discussion prognosis. They must spend time working on an interdisciplinary team. They must have some exposure to palliative care.

You don't have to be prescriptive in saying that you have to have this curriculum, but you can indicate that residents need to acquire certain expertise that those of us who care for old, sick, frail, palliative patients know it is absolutely essential and that we know is not universally provided in residency programs. That's one of the relatively modest things that Medicare could do that wouldn't cost the federal government any money, that could make a difference in the way we train the next generation of physicians.

Alex: Muriel, as you can tell listening to this podcast, is a thought leader and public intellectual I would say, thinks deeply about these topics. I have been thinking as I've been reading some of the work you've been sending me in preparation for this book about this larger idea of the care ecosystem and how there are these larger forces, both from industry, from government, in terms of regulatory bodies and patients, et cetera, who are functioning, as you say in your articles, to maintain the status quo. One of the things I do is serve on this California Technology Assessment Forum panel that evaluates evidence and cost effectiveness of new drugs and devices.

One of the themes that's recurred through several of these meetings is that the patient interest groups that are supposed to represent the perspectives of the patients have been bought out to some extent by pharmaceutical companies, by device manufacturers who are funding those interest groups. There's an artificial seeming alignment between patients and device and drug manufacturers, when in fact, left to their own without any conflicts of interest, patients might say something very different from what they say in public. I absolutely agree there are these larger forces, and I worry that they're being manipulated to achieve the ends of big business, Big Pharma, device manufacturers.

Muriel: I think you're right, and I think that some of the only ways to prevent that kind of manipulation is through regulation. Another example of manipulation, a very direct one, is that we have direct-to-consumer advertising of drugs and devices in this country. New Zealand is the only other country in the world that allows this. Every other developed country, and probably others as well, think that it is illegal, unethical, immoral, whatever you want to call it, all of the above, to have direct-to-consumer advertising. There are things that we allow in our system that arguably we shouldn't allow.

Alex: And we have to be worried about what may be ahead with Secretary Price and the administration championing reduced regulation. They don't want to get in the way between doctors and patients, and they want to have maximal choice, but I think what's behind a lot of that movement is greater freedom and less regulation for pharmaceutical and device manufacturers to influence care decisions that doctors and patients don't even realize they're being influenced as they're watching these commercials, reading advertisements in the medical literature.

Muriel: Some of the regulations potentially would be federal, but others could be introduced by hospitals. For example, it used to be the case that drug representatives routinely entered hospitals and peddled their wares to physicians there. After Jerry Kassirer wrote a book about doctors being on the take and there was a lot of publicity about the influence of the pharmaceutical industry on physicians ... Now that's not the consumer directly. This is through the intermediary, the physician, who is after all the prescriber. After a lot of adverse publicity about that, many regulations were introduced at a state level saying that you have to disclose gifts and things that you get as a physician from the pharmaceutical industry, and introduced at the hospital level saying no pharmaceutical representatives are allowed into the building. A lot of that I think has made a difference.

One of the things that I learned in fact in my book, which shows how hard it is to keep up with how the ecosystem tries to right itself all the time, there are many fewer drug reps today than there were in 2007 at the height of the drug rep time. Now there's still a lot. There used to be 100,000. Now there are only 63,000 in the United States. But what the pharmaceutical industry has done instead is that they try to lobby, work with, influence the pharmaceutical and therapeutic committees of hospitals, because they realize that those committees determine the hospital formulary. Perhaps the reason that my patient Barbara got the particular drug that she got was because that was the drug that was on the formulary. They influence the hospital formulary both so as to ensure that their drugs are dispensed in the hospital. Hospital business is maybe, I can't remember whether it's ... it's a relatively modest fraction of all of drugs. But patients go home with prescriptions.

Alex: Oh, boy, do they!

Muriel: And in fact, we know that our older patients, that about 40% of them go home with between five and eight drugs. Another close to 40% go home with nine or more drugs. They tend to keep taking those medicines that were prescribed in the hospital. After all, they were sick when they went in and they're hopefully well when they leave, and maybe it had something to do with this new improved drug regimen. The drug industry is very much interested in hospital formularies, not just because of what happens in the hospital but because of what's going to happen after a person is discharged. That's a long-winded way of saying that just as there are ways to assure that drug companies don't influence physicians directly in the way that they often did in the past, and there are in principle ways of assuring that they don't influence patients directly through direct-to-consumer advertising, and there are ways to keeping them out of hospitals. There might also be ways to regulate this new avenue that they'd come up with of interfering or affecting or educating the members of hospital P & T committees.

Eric: What should our role be as geriatricians, as palliative care doctors, and other clinicians, nurse practitioners, nurses, social workers, what should our role be in this health care ecosystem?

Muriel: It depends whether you want to take a political role. Do you want to pick a cause and say now you've learned that P&T committees are being manipulated, at least in some instances, by drug companies? You want to work with your hospital to make sure that your particular hospital has conflict of interest regulations that really decrease the degree of influence that pharmaceutical companies can have. If that's your particular crusade, that's what you could do. One of the other things I was going to say about the patient that I was discussing was that she might not have had all the bad things happen to her that in fact happened to her if she hadn't been hospitalized in the first place, but also even if she had been hospitalized, if she'd been in an ACE unit, an Acute Care for the Elderly unit. I read an interesting article that asked the question: Where are all the ACE units?

Eric: Yeah.

Muriel: It said there is evidence now, a fair amount of evidence, that they're effective. They don't decrease the risk of iatrogenesis, of delirium, of falls, of incontinence, and so forth to zero, not by a long shot. But they are beneficial to the kinds of patients that we're talking about to a great extent here on this program. Yet they are very few of them. Why are there very few of them? That gets back to a different player that I haven't talked about which is the hospital CEO, who's interested in the bottom line and has an accounting system where you have an "every boat on its own bottom" philosophy. It fails to look at the interaction of the different parts of the hospital.

At one of the institutions where I gave care for many years, they closed the only in-patient palliative care unit in the city, and shortly thereafter, although they say there was no relationship other than a temporal one, they introduced a liver transplant program. The in-patient palliative care program, while perhaps beneficial to the whole hospital in terms of decreasing costs, by itself was not breaking even. The liver transplant unit, given the reimbursement at the time for liver transplants, was a moneymaker for the hospital.

Eric: Sure.

Muriel: Another crusade one could have as a clinician wanting to do something is, if you conclude that what would make most sense for your patients is to have an ACE unit or an in-patient palliative care unit or a home care program, to lobby within your institution for that. If you're more politically inclined, I'm not sure the feds are going to be the place to go these days, but depending on what state you're in, there may be a lot of state programs that try to change the delivery system for our oldest, frailest patients. No simple fix.

Alex: Yeah. We usually finish with a song too, but before we get back to the song, I understand that Pete Seeger was at one time blacklisted. Can you say a little bit more about that?

Muriel: Many, many performers in the United States were blacklisted in the McCarthy era in the early '50s.

Alex: What does that mean, blacklisted?

Muriel: They weren't able to perform on television or in public venues. Made it very difficult to earn a living. Pete Seeger was a protest singer even back then, and so he wasn't able to give concerts and charge for tickets. Instead, he did things like visit elementary schools. That's when I first saw him as a kid. He came to my school. I don't think he was singing about "Get Up and Go" at that point in time.

Alex: Weren't some journalists blacklisted last week from a press conference? I'm just saying. I'm just saying there are some parallels there.

Eric: We got to watch out, Alex, and our podcast.

Alex: Who knows. He'll come after the GeriPal Podcast next.

Alex plays ìGet up and goî by Pete Seeger.

Produced by: Sean Lang-Brown

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Thursday, March 23, 2017

Quality & Safety Consideration for Patients with a POLST or Living Will

Do We Ask for Permission to Treat First? Or Treat first & Ask Questions Later?

Figure 1: This resuscitation card links to a video by the patient explaining their care preferences:https://vimeo.com/user44599014/review/188926708/25b475b740 The password is: 911.

As we are educated on the ethical & financial concerns surrounding end-of-life care, we are informed by Institute of Medicine that end-of-life care is broken and accounts for $170 billion in annual spending (1). This projection will exceed $350 billion in less than 5 years. To better align patient wishes, living wills & POLST (Physicians Orders for Life-Sustaining Treatment) are necessary documents and processes. Whether you like them or not they are here to stay are we need to assure provider competency.  Additionally, Medicare now reimburses for advance care planning conversations in the office or via telemedicine. In the past, Physicians have tried to embrace living wills and more recently, the POLST paradigm has emerged to the national forefront. POLST & POLST-like processes have grown rapidly, which has outpaced the ability of states to educate to ensure the safe & effective utilization of this process.  Both living wills & POLST have limitations but are good documents with many benefits and are very much required to allow patients to preserve their autonomy (2,3).  How these documents are applied by others, in clinical situations, such as critical illness, has led to the unintended consequences of both “over” & “under” resuscitation.  By way of their success, we have essentially introduced a new patient safety risk which has no quality oversight.  As a result, we now must recognize these risks & act to protect patient wishes and outcomes.

Living wills require interpretation. POLST does not and is an immediately activated medical order set. So can we correctly interpret living wills and can we trust the POLST becomes a question. Most living wills are created by attorneys years in advance prior to the onset of medical conditions.  The POLST are completed by other providers (ex. Social Workers or admission nurses) & signed by physicians who may or may not have been involved in the conversation.  So, how do frontline physicians (such as Pre-hospital, Emergency Medicine, Trauma and Hospitalist physicians) interpret these during a brief interaction? Specifically, Emergency Medicine physicians do not know these patients or families & have no established trusts or report, yet, within seconds, are expected to understand the patient’s wishes to either accept or decline life-saving interventions based upon a form.  Of what is often documented, the “Full Code” appears understood.   However, with a do not resuscitate order, things are less clear.  Further, with POLST, there are many combinations of treatment options, which make the water muddier.

The TRIAD (The Realistic Interpretation of Advance Directives) studies have questioned whether or not providers understand what to do with Living wills, do not resuscitate & POLST orders.   It questions whether we are trampling on patient wishes to better control costs.  We need to figure out who is better off with a living will vs. a POLST.  We need to set quality standards & abide by them universally for both the living will & POLST.   More importantly we need to standardize Goals of Care conversations, so they are balanced & can accurately predict the patient’s wishes.  That information then requires the ability to be conveyed to a totally different & disconnected medical provider in a safe & effective manner that ensures no patient safety risk to the actual patient.

Volandes, Wilson & El-Jawahri have performed pioneering work with clinician to patient video. It has been shown that clinician to patient educational videos can help patients make informed decisions about CPR (4,5,6).   So, could we then utilize patient to clinician video testimonials to help providers make informed medical decisions for patients in a safe & effective manner?   In March 2017, the Journal of Patient Safety released the TRIAD VIII Study.  This was a Multicenter Evaluation to Determine If Patient Video Testimonials Can Safely Help to Ensure Appropriate Critical vs. End of Life Care.   From this work, we can now say that we can do things better to ensure we get it right for patients.    Figure 1 is just an example of how we can bring patients back into the actual decision-making process.

With patient video clarification, we can now hear from patients, in their voice and expressions, when they are critically ill & receive their guidance rather than providers guessing after reviewing a form that may or may not have been completed correctly. We know that forms when not fully completed lead to errors in treatment(8). We know that POLST forms can be discordant with patient wishes (9).  Resuscitations are complex & physicians need to know what to do initially in the first seconds to 15 minutes of an event.  Furthermore, the physicians comfort in the process to trust and act on what is documented is of paramount importance. Paper forms at present do not do this well or provide the necessary level of assurance to Physicians.  We still need POLST & living wills but we also need to hear from the patients to clarify the patient’s wishes. With emerging technologies, we also need to be able to incorporate patient to clinician video in a safe & cost effective manner.

In conclusion, we have a safety problem with living wills & POLST documents. TRIAD VIII presents an opportunity to do better. The traditional treat first and ask questions later approach is already being challenged by the development of malpractice litigation. To do what is right for patients, we need to embrace both living wills & POLST & be sure we set quality standards for their completion & understanding.  We must also investigate patient to clinician video and technologies to allow the clinicians to hear from the patient to accurately guide their care.

  1. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. National Academies of Sciences, Engineering, Medicine. September 17, 2014. Available at: http://www.nationalacademies.org/hmd/Reports/2014/Dying-In-America-Improving-Quality-and- Honoring-Individual-Preferences-Near-the-End-of-Life.aspx. Accessed January 3, 2016.
  2. Nicholas LH, Langa KM, Iwashyna TJ, et al. Regional variation in the association between advance directives and end-of-life Medicare expenditures. JAMA. 2011;306:1447-53.
  3. Fromme EK, Zive D, Schmidt TA, et al. Association between Physician Orders for Life- Sustaining Treatment for Scope of Treatment and in-hospital death in Oregon. J Am Geriatr Soc. 2014;62:1246-51.
  4. Volandes AE, Paasche-Orlow MK, Mitchell SL, et al. Randomized controlled trial of a video decision support tool for cardiopulmonary resuscitation decision making in advanced cancer. J Clin Oncol. 2013;31:380-6.
  5. Wilson ME, Krupa A, Hinds RF, et al. A video to improve patient and surrogate understanding of cardiopulmonary resuscitation choices in the ICU: a randomizedcontrolled trial. Crit Care Med. 2015;43:621-9.
  6. El-Jawahri A, Paasche-Orlow MK, Matlock D, et al. Randomized, controlled trialof an advance care planning video decision support tool for patients with advanced heart failure. Circulation. 2016;134:52-60.
  7. Mirarchi FL, Cooney TE, Venkat A, et al. TRIAD VIII: Nationwide Multicenter Evaluation to Determine Whether Patient Video Testimonials Can Safely Help Ensure Appropriate Critical Versus End-of-Life Care. J Patient Saf. 2017 Feb 14 [Epub ahead of print] PubMed PMID: 28198722.
  8. B Clemency et al. J Am Med Dir Assoc 18 (1), 35-39. 2016 Sep 28. Decisions by Default: Incomplete and Contradictory MOLST in Emergency Care.
  9. Hickman SE, Hammes BJ, Torke AM, Sudore RL, Sachs GA. The Quality of Physician Orders for Life-Sustaining Treatment Decisions: A Pilot Study. J Palliat Med. 2016 Nov 1 [Epub ahead of print].

Ferdinando L. Mirarchi, D.O. has disclosed that he is the Principal Investigator of the TRIAD research series. He has an independent medical practice that focuses on advance care planning. He further discloses that his patients receive an ID Card depicted in this publication.

Kate Aberger MD, was a study site Principal Investigator for the TRIAD VIII study and has no further disclosures.

by: Ferdinando L. Mirarchi and Kate Aberger
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Thursday, March 16, 2017

Navigating end of life issues for those with no known family and friends

Consider the following scenario:

A previously independent 80 yo gentleman develops a catastrophic illness.  His mental status is poor due to strokes during his illness and it is unlikely he’ll recover the ability to meaningfully interact with the world.  However, he also has severe lung disease and he needs a tracheostomy with the ultimate plan of going to to a long-term ventilator facility.  It is unlikely he would ever leave the vent facility.  He has no family members, no friends.

Should he get a trach?

In most facilities, my sense is that the answer is yes.  The logic is that unless we have clear and overwhelming evidence that a patient does not want a specific intervention, death is always the worst outcome and thus must be avoided at all costs.

However, I wonder if this logic is flawed.  If we have 100 patients in this scenario, it is very possible that some of them would want the trach.  But it also seems quite likely that most would not want the trach, feeling that it would prolong a life that they feel has no value.  Our current system implicitly suggests that keeping someone alive in a state they don’t ever want to be in is not nearly as bad as allowing death for someone who values life regardless of their ability to interact with the world.

For me, both errors feel equally egregious.  And the current system which implies that any death is worse than keeping someone alive against their will feels one-sided.

Consider an analogous situation from a very different field:

When a new employee elects to save for retirement, the default option is often a low-risk, low-return money market fund, which experts agree is the wrong answer for the vast majority of new (mostly young) employees.  However, the low-risk option was the safest (prevented lawsuits from employees if a default high-risk option lost money).  However, having an overly “safe” default, contributed to the very predictable problem of most people not having enough retirement savings.

There are increasing efforts to try to create defaults that are more likely to be better choices for most people.  So, a new employee of a certain age will be given a default that is tied to their most likely retirement date (“life cycle” fund).  For young people, these are likely to be more aggressive funds that have a high proportion of their money in stocks.  It is likely that some young people who are very risk averse will end up in a retirement fund that embraces more risk than they are comfortable with.  However, by using what is most likely to work for most people, I believe that this new approach is probably helping more people than it hurts.

Coming back to medicine, I wonder if a “reasonable person” standard would be better than our current default of doing something unless there is clear evidence that a patient doesn’t want the intervention.  Instead of saying, “If we don’t know whether he’d want this, we have to do it,” how about “What would most people in his situation want?”  That way, the burden of evidence is not on one side to say he would not want this, but on both sides to get a sense of what is most likely what this patient would want. In a situation where we don’t know what an individual patient would want, it seems reasonable that we make the assumption that he is an “average” person who would want what most people want.

Just as having an overly safe default retirement option leads to predictable problems, I think our current paradigm of do everything unless we have clear evidence to the contrary, is likely leading to the predictable error of sustaining a life that many patients don’t want. A more nuanced approach where we look at what most people would want would decrease the errors.

by: Sei J. Lee
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