Wednesday, November 22, 2017

Tom Gill on Distressing Symptoms, Disability, and Hospice

Restricting symptoms and disability in last year of life

by:Alex Smith @AlexSmithMD

In this week's GeriPal Podcast, sponsored also by the Journal of the American Geriatrics Society, we talk with Tom Gill, MD, Professor of Medicine at Yale.

With guest co-host Dan Matlock, MD, from the University of Colorado, we talk with Tom about his recent JAGS publication on the relationship between distressing symptoms, disability, and hospice enrollment.  Tom conducted this study in a long running cohort of older adults that has made a number of outstanding contributions to the GeriPal literature (see links).

Major points:

  • Restricting symptoms start 6 months before death, but most folks didn't enroll in hospice until 2 weeks before death
  • Disability increased markedly over the last months of life, and precipitated hospice use, but most hospice and palliative care programs are not set up to help with a persons daily needs.  There's a mismatch between the need for daily assistance and the hospice and palliative care services offered.

Tom's song request?  Stairway to Heaven.  This podcast was recorded at the recent Beeson meeting, an aging research meeting, near Albuquerque, New Mexico.  At the end, you hear about 30-40 of us singing the end of Stairway around a campfire.

As in singing, "And as we wind on down the road...:"

Nailed it!


Listen to GeriPal Podcasts on:



Alex: Welcome to the GeriPal Podcast, this is Alex Smith, and we have a special co-host with us today. We're coming to you from the Beeson meeting in Albuquerque, New Mexico, and we're joined today by Dan Mattlock, who is an Associate Professor at the University of Colorado. And welcome to the GeriPal Podcast as a co-host today, Dan.

Dan: Thank you very much, I'm excited to be here.

Alex: Terrific. And we have a special guest with us today at the Beeson Meeting. Beeson, for those of you who don't know, is a geriatrics and aging-focused research meeting of clinicians, and this year it's at a really fancy-schmancy nice resort near Albuquerque. And we're joined today by Tom Gill, who is Professor of Medicine at the Yale School of Medicine, and an extremely well-known geriatrician researcher. Welcome to the GeriPal podcast.

Tom: Thank you, Alex. I'm looking forward to our discussion.

Alex: Terrific. So, we usually start out with a song request. What would you like us to perform?

Tom: How about 'Stairway to Heaven?'

Alex: A terrific choice. We will give it our best shot.

Alex sings "Stairway to Heaven" by Led Zeppelin (Jimmy Page and Robert Plant).
So this is a podcast in a series of podcasts we're doing between Journal of The American Geriatric Society and GeriPal. And today we're going to talk about an article that is in early view on the JAGS website. And this is an article about restricting symptoms, disability, and hospice use from a long-standing cohort study that Tom has been running.

Do you want to tell us a little bit about ... Just to set it up for our audience, and mostly clinicians, why this study is important? What clinical question are you addressing here?

Tom: Yeah, we know that the use of hospice is ... Or, it's underutilized in a few ways. One is, a minority of older persons, or persons in general will take advantage of the hospice benefit. And second, length of stays in hospice are extraordinarily short. And, so from our perspective, it's a wonderful resource that's been underutilized.

Alex: Terrific. And could you tell us a little bit about the cohort in which you study this issue?

Tom: We assembled a cohort back in 1998 of 754 persons seventy or older living in the greater New Haven community. They were all living in the community, and they were all non-disabled. And we were interested in primarily trying to determine the mechanisms underlying the onset of new disability and functional decline over time. It was supposed to be a two, and then a three year study, but we've continued to follow this cohort for now twenty years, interviewing them every month.

Alex: Incredible study, and a number of important publications related right at the geriatrics/palliative care interface have come out of this. Audience members may be familiar with the study in the New England Journal about trajectories of disability towards the end of life, and Sarwat Chaudhry published a paper about restricting symptoms, and sort of delved into which specifics symptoms change in frequency towards the end of life.

Dan: Yeah, that's one of my questions from reading this. So, what is a restricting symptom, and how is that different from disability?

Tom: Sure. Every month we asked the participants two questions; Whether they've cut back on their usual activities because of an illness, injury, or other problem, or whether they've had to spend at least a half a day in bed because of an illness, injury, or other problem. And the reason for those questions was because that was going to be our mechanism to identify bad things that happened that didn't lead to a hospitalization.

This was the precipitating events project. We were interested in identifying the events that precipitate disability. Our prior work had focused almost exclusively on hospitalizations, but the majority of persons who became newly disabled were not hospitalized. So we thought there must be other bad things that are happening. So restricted activity was our mechanism to identify less severe events.

And then we were also interested in determining the reason for restricting activity. So, if someone said yes to either of those two questions, we asked a series of questions about specific symptoms, and for this study, we focused on fifteen of those that varied from shortness of breath, to osteoarthritic pain, to fatigue, et cetera. And if they said yes to the symptom, we asked whether that caused them to have the restricted activity. So we linked the two.

Dan: And then how did you define, or how did you assess disability?

Alex: And how was that different?

Dan: And how was that different?

Tom: Right, so we ... Every month during the same interviews we ask about thirteen different functional activities for basic ADLs. Bathing, dressing, walking, and transferring. And we asked them, at the present time, do you need help from another person to do those tasks? There are five IADLs and four mobility-related ... Or, three other mobility-related items.

Alex: Terrific. And in this specific ... This particular study, you looked at the relationship between hospice use amongst decedents, and there were about four hundred some odd decedents, and I think about 40% of them ended up using hospice. And you looked at the relationship between restricting symptoms, disability, and when they enrolled in hospice. Is that ...

Tom: So, the supposition was that there would be either no relationship between restricting symptoms and the use of hospice, or disability and the use of hospice, in part, again based on what we know of hospice, that it's generally underutilized. And we thought that folks were taking a disease-specific approach to the use of hospice, as opposed to focusing either on function, or on these restricting or troublesome symptoms.

So that was the underlying kind of premise, and we thought, "well, if doctors aren't putting much stock in these very important features, that might be an explanation in why hospice is not used to the extent that it might otherwise be.

Alex: And can you tell us what you found?

Tom: So, contrary to what we found, or what we thought, there was actually a fairly strong relationship between the occurrence of restricting symptoms in any one month, and the use of hospice. Restricting symptoms increased the use of hospice by 62% in any one month.

The relationship for each additional restricting symptom, I believe the increase was about 9%. And for disability, for each additional disabled activity was around 10 or 11%.

But, that has to be interpreted in the context of the median length of stay in hospice, which was only twelve days. So there were strong relationships between these exposures and the use of hospice, but hospice was used in more than half the participants in less than two weeks. So it was fairly late in the game.

Alex: And I think clinically, you know we're all clinicians, I think it makes sense intuitively that as somebody's symptoms progress, they're more likely to enroll in hospice. I remember early on in my clinical training in palliative medicine, David John Syracuse, one of my mentors, said, "you can ask patients, what is your body telling you?" And when your body is hurting and suffering, then that's often when they sort of make a change in their goals of care, and there's a shift and they might be more open to hospice.

Does that ring true with your clinical experience, Dan?

Dan: Oh, yeah, completely. I think ... And that actually was another question I have. So, did you ... If you started this in 1998, palliative care wasn't very pervasive at that time. Do you see any changes over time, or do you have enough people to look at that?

Tom: I think we did look at time as an interaction, and we probably were not powered to evaluate that. There was not an interaction for time. The hospice movement was still in place in the late 1990's. Palliative care as a field wasn't, but hospice care was. The cohorts aged, and I think the use of hospice is increased in part because of the aging of our underlying cohort.

Now, one thing I didn't mention early ... I mean, we looked every month for the last year of life for the prevalence and the severity of the symptoms and the disability, and they were relatively flat for the symptoms until about six months prior to death. And then the prevalence of restricting symptoms started increasing, and the severity of restricting symptoms increased. But it was really not until the last month or so in which hospice use started being used ... Hospice being used.

Alex: So, this twelve day thing, I've heard from hospices, this is something that they really would like to see increase. They would love to offer hospice for longer periods of time for folks. After looking at this, do you have thoughts on ways hospices could increase the number of days they are able to provide for people?

Tom: Well, I think this is where that palliative care field can ... If folks would avail themselves more to palliative care, not to hospice ... Because earlier in the last year of life, they're not ready to make a decision for hospice. But, I think they might make a decision for hospice sooner if they're already being cared for by a palliative care clinician.

And those discussions, they need to start earlier. The decision to opt for hospice is often not made overnight. It's a decision that needs to incubate, and perhaps be revisited over the course of many weeks and sometimes months. So as these symptoms increase, and these are all folks that had clearly terminal conditions, about ... A proportion had cancer, and another proportion had organ failure, and dementia. And frailty was actually the largest group. But there weren't that many differences within those conditions. So the results were fairly robust.

But I think earlier discussions in the context of palliative care I think might improve some of those statistics, and I'm not sure if that's where the field is heading.

Alex: Hopefully that's where the field is heading. I would say, that's the idea that we get people enrolled in palliative care from the time of diagnosis with serious illness. It's a little bit trickier in many of the older adults that we care for who don't have a clearly terminal condition, who have that frailty, who have multiple chronic conditions, who don't have a clearly terminal illness, who nonetheless are nearing the end of their lives.

Tom: But, I mean, palliative care need not be limited to the end of life, and again that's where the symptoms came in. The prevalence of symptoms, of these restricting symptoms, I believe was 20% a year prior to death, and then increased quite significantly in the last six months of life.

So, even if it's not obvious that someone is in that last phase of life, they clearly have a large burden of symptoms, and it would be I think to the patient's advantage to have input from clinicians who have expertise in palliative care. Because that extra layer of care in addition to their usual care I think could be quite beneficial.

Alex: And we'll have links to the article itself, and the terrific figures, because I think the figures really tell the story. And we're describing about sort of acceleration of symptoms and disability, and I want to touch on the disability point because I think that's important too. Showing that disability increases before somebody enrolls in hospice. And that ... Is hospice ... How well does hospice and palliative care provide for the needs of disabled older adults?

I know your study didn't address that directly, but it's certainly something that's worth commenting on.

Tom: And I believe that one of our prior ... We have a couple prior papers looking at hospice in the last year of life. Descriptively, looking at symptoms before and after the start of hospice, and the restricting symptoms are reduced after the start of hospice. And ... Difficult to make causal association, but the data were fairly compelling, in terms of the value added to hospice. That's what you would hope to expect.

The same is not necessarily for disability, at least the way we defined it, because it's the need for personal assistance. And that need is likely going to be maintained through the end of life.

Dan: Yeah, your question is a good one. I mean, hospice is great, but it can't do everything for everybody, and that's kind of a tough thing for people to realize sometimes when they're sick. And disability ... If somebody's home with their family with disability, they might not be getting everything they need in hospice.

Alex: Yeah, the major needs, palliative needs, moving away further from the end of life to people living with serious illness, and the older adult patients that we care for are often needs for daily assistance type care. And hospice doesn't provide that benefit. Palliative care doesn't provide that benefit. I think it's an argument for restricting of the healthcare system to better meet the needs of older adults who are living with serious illness, which includes not just symptoms, but also disability.

The systems were mostly designed around fifty year olds with cancer, but the way demographics are changing in this country, we really need to shift the symptoms to meet the needs of older adults we're caring for.

Anything else you want to say about this particular study, or point out to our audience? Any take home points that we haven't covered yet?

Tom: Well, it's just ... These are questions that we're addressing now that weren't on the radar screen twenty years ago. For a variety of reasons, this was not designed to be a study of death and dying, but because we followed this cohort for such a long duration of time, and the vast majority of our participants have died. And it is just fortuitous that we had collected all this data, and now can start addressing some of these questions. And we would welcome ideas from the palliative care community about other questions that these data potentially can help address, because I think they're quite unique.

We've completed almost 90,000 phone interviews over the past twenty years, and have had less than 5% attrition in this cohort for reasons other than death. And we go out to the home every eighteen months to do a very comprehensive evaluation. Evaluating cognition, and depressive symptoms, and physical performance, and things of that nature. So we often say we know these participants better than they know themselves.

Dan: I've got to say, that's one of the coolest things about this, is this cohort you've followed for twenty years. So, if four hundred people of them have died, and you enrolled seventy year olds twenty years ago, that means you must have a cohort of three hundred ninety year olds you're following. Is that true?

Tom: Well, for this study, because we needed to link the data to CMS to identify the hospice cases, I believe they were cases through 2014. So we only have, I think, sixty or so participants who have not yet died. And we are continuing to interview them, and we're planning to interview them all until they've died.

The other interesting footnote here is this project was my Beeson project from 1997. I had the good fortune of combining the Beeson winner Robert Wood Johnson Generalist Award, and this got the cohort assembled. And then we exhausted the money, and I'm one of the few Beeson scholars that spent the money before the three years were out. It was a very wise investment. And then we had the good fortune of getting an NIH grant that allowed us to continue to follow up, although when I applied for that NIH grant, we had enrolled five hundred participants and had followed them for about six months with monthly interviews. The biggest criticism, and it wasn't funded the first time around, was, we don't believe you can do this.

So we resubmitted the grant the next possible cycle, and we now had follow up for about thirteen months. And 99% completion rate for these interviews. Very little attrition rate. We says, "do you believe us now?" So we were funded on that second go-around.

But there were a few times during this twenty years in which the funds were almost on fumes, and we were able to patch things together and allow us to continue. And these participants were grateful for, because we were learning a lot about the course of disability, and a lot now about what's happening in the last phase of life.

Alex: Well, that's terrific. Thank you so much for joining us. We will again have links to the article itself, and is there a website for the cohort?

Tom: It's off our ... The Pepper Center, the Yale Pepper Center site. There'll be a little blurb on the pep study.

Alex: Terrific. We'll have that link as well. Thank you so much for joining as co-host, Dan.

Dan: Oh, it was my pleasure. This was fun.

Alex: And thank you so much for joining this JAGS/GeriPal podcast, Tom.

Tom: Thank you, Alex.

Alex: Alright, let's end with a little 'Stairway to Heaven.'

Alex sings "Stairway to Heaven" by Led Zeppelin (Jimmy Page and Robert Plant).

Read more »

Monday, November 20, 2017

What a Gatorade Bottle Taught Me About Functional Assessment

by: Leah B. Rorvig, MD, MS (@GeriPowerMD)

On the third day after my arthroscopic shoulder surgery, I was finally alone at home. My nausea had receded. And I wanted Gatorade. I went to the fridge, pulled out the bottle, and lodged it between my knees. I twisted and twisted with my left hand. I held the lid with a towel. No dice. It wouldn’t budge. Defeated, and still thirsty, I put the bottle back in the fridge. It is still there.

My ADL disability is temporary. I’m in a right arm sling 24 hours a day for the next 6 weeks, during which time I can’t drive or hold anything heavier than a cup of coffee in my right hand. But by next May (6 months from now) my surgeon says I’ll be back to surfing two or three times a week and, best of all, it is very unlikely that I will ever dislocate my right shoulder again (despite my love of sports like surfing and rock climbing). But as a clinical fellow in geriatrics, having a temporary ADL disability has profoundly impacted my perspective on my patients’ functional limitations.

Recently the daughter of a patient of mine (who happens to be in his 90s) told me that he would spend “hours” changing his hearing aid batteries. This gentleman had plenty of support around, and so my immediate response to the patient was “Why don’t you just ask someone to do it for you?” But now that I’ve experienced the shame and frustration of being unable to wash my own dishes—and even my own hair—I can’t believe I would ask such a naïve question so unthinkingly.

Is it necessarily shameful not to be able to wash your own dishes or change your own hearing aid batteries? Of course not. But in our society where self-reliance and independence are core pillars of adulthood, I think I’m not alone in experiencing my own loss of function as a threat to my self-worth.

Curious about what the literature has to say about how we as clinicians should help our patients cope with their declining functional status, I didn’t find much. Yes, I learned that unmet ADL need is associated with all kinds of bad outcomes, including increased risk of hospitalization and even increased mortality. Studies also find that depression in old age is a risk factor for disability, and it is a two-way street - disability is also risk factor for depression. Dissatisfied with what I found, I reached out to one of the leading researchers in my department, and he acknowledged there is very little research on how to manage or improve quality of life among those who already have disability.

What will I do differently as a result of my own unanticipated ADL disability? I’ll stop reflexively minimizing my patients’ functional decline and what it symbolizes. Instead of just asking my patients about their ADL impairments, I now feel I need to also ask about the experience of even having ADL impairments. And then I can begin the real work of understanding what might help those patients who are experiencing distress due to their functional disability. My guess is that it isn’t just an easier to open Gatorade bottle.

Read more »

Wednesday, November 15, 2017

Global Palliative Care Takes the Stage

by: Jessi Humphreys, MD (@jessi_humphreys)

Across the world, millions of individuals, largely from developing regions, suffer and die in pain, with no access to palliative care services or pain relief. This includes 2.5 million children dying annually with serious health-related suffering. This is inexcusable. We must intervene on this well-demonstrated inequality. Moreover, fixing this problem would be surprisingly cheap.

In the past, global health initiatives have had many key priorities: maternal and fetal mortality, immunizations and infectious diseases among them. The importance of these areas cannot be overstated (remember the damage that polio and small pox caused!). Global palliative care is one of the newest priorities. With increasing energy dedicated to chronic and life-limiting illness including oncologic disease, health care providers discovered that globally we lack the supportive care and pain relief to enable quality treatment of these diseases. In 2014, the WHO published the first-ever global resolution identifying palliative care as a core component of a well-functioning complete health system1.

In preparation for World Hospice and Palliative Care Day on Oct 14, the Lancet released a commission: Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage.2 This hot-off-the-press report presents the current burden of palliative care needs, the cost required to intervene, and recommendations for moving forward. It estimates that in 2015, 45% of deaths worldwide experience health-related suffering and a need for palliative care and pain relief. However, ~70-85% of patients lack access to these services. In other words, up to 38% of patients worldwide die in pain.

As opposed to looking at outcomes such as morbidity and mortality, the report measures the global burden of severe health-related suffering, which is illness-related suffering that compromises physical, social or emotional functioning. They also introduce the concept of a SALY (suffering adjusted life year), in contrast to a DALY (disability adjusted life year) or QALY (quality adjusted life year). This shifts the narrative, framing global palliative care and the alleviation of suffering as an ethical imperative, independent of economic outcomes. From the perspective of human rights, all individuals deserve the right to die with dignity, even if there is no financial gain. There are also economic arguments, and hypotheses that patients with less suffering have the ability to contribute more, but this is not what drives our responsibility to right this inequality.

The primary recommendation of the report focuses on the lowest-cost essential palliative care package that could alleviate suffering. This package includes key medications, basic equipment, and human resources that would be required for the delivery of care.

Considering that the majority of patients in need of care in this study had suffering related to pain, access to morphine was a primary focus for intervention. In studying over 170 countries, of the roughly 300 metric tons of oral morphine equivalent,

Oral morphine is off-patent and cheap; it is estimated that one million dollars per year would provide adequate pain control to all children under 15 years-old in the world. Meeting the global opiate shortfall for children and adults would total $145 million (assuming a price discount that has been gifted to wealthier countries). Lower income countries are frequently sold medications at higher costs as compared to their higher income cousins. These costs, however, are uniformly low when compared to the $12.8 billion in global health aid the United States contributed in 2016,3 or the $100 billion the world’s governments spend on enforcing drug prohibition annually.

Other than economic concerns, the barriers to morphine access within low and middle income countries are largely legal and systemic. Many countries do not legally allow patient access to morphine, and often only allow access to morphine in the hospital. As a result, patients may have access to pain control in the hospital, but then are sent home to suffer and die in agony.

Underlying the systemic and legal barriers is what has been called an “opiate-phobia,” a deep-seated fear about potential misuse of opiates, fed in part by the visible opiate epidemic in the United States. It is assuredly wise to be mindful of excessive opiate use and have systems in place to prevent opiate misuse. However, in developing countries where access to morphine has increased in conjunction with improved palliative care, we have reassuringly not seen a concomitant increase in opiate use disorders. Uganda serves as an encouraging success story. Advocates overcame legal barriers and enabled mid-level providers to prescribe opiates. Through extensive policy change, and widespread education, they created a network of outreach services and revolutionized their delivery of palliative care services, largely to patients in their homes.

As a call to action, the commission proposes a multi-pronged approach characteristic of global health initiatives. It calls for increased nursing and provider training, improved access to off-patent affordable oral and injectable morphine, and the recognition that an integrated, comprehensive, and universal health coverage system must include palliative care.

This commission reminds us to be angry, and hopeful. It is appalling that millions of people die in pain, and that this suffering is disproportionately layered on those living in poverty. It is striking that only one million dollars would allow children globally to die without pain, while Americans spend nearly 3000 times this amount on Halloween candy annually. But we are also uniquely empowered and able to close this gap in inequitable palliative care and pain relief. This is one of those diminishingly rare opportunities where solving a problem would be both ethical and affordable. We need to get to work.

  1. WHO | Palliative Care Fact Sheet. WHO Palliative Care Fact Sheet. Accessed October 24, 2017.
  2. Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report. The Lancet. October 2017. doi:10.1016/S0140-6736(17)32513-8.
  3. Financing Global Health 2016: Development Assistance, Public and Private Health Spending for the Pursuit of Universal Health Coverage. Accessed October 24, 2017.

Read more »

Monday, October 30, 2017

Skin Failure: A New Paradigm

by Jeffrey M. Levine MD, AGSF, CWSP

Skin failure is an emerging concept that deserves wider acceptance, particularly in the palliative care setting. Clinicians have long recognized that skin failure exists, but adoption of the name has been limited due to lack of a universally accepted definition. Terms such as Kennedy Terminal Ulcer (KTU), Skin Changes at Life’s End (SCALE), and the Trombley-Brennan Terminal Tissue Injury (TB-TTI) have been advocated to describe skin breakdown in patients who are dying. However this nomenclature does not fit into the clinical course of wounds that have similar characteristics in patients who recover from critical illness but have residual pressure injury. The term 'skin failure' assembles these phenomena into an easily understandable and more clinically accurate term.

Pressure ulcers are often associated with lapses in quality of care.  However, there is growing recognition that pressure ulcers can occur in circumstances when risk is recognized and prevention measures are implemented. We now have improvements in life-support technologies in intensive care, hospital, and rehabilitation settings applied to an increasingly high-risk population that effectively prolongs life, negating terminology that implies imminent mortality. I propose clarification of nomenclature through recognition of skin failure as a clinical syndrome that shares similar mechanisms with other organs. This includes a conceptual framework that some pressure ulcers, whether or not associated with mortality, are unavoidable consequences of skin failure.

I propose the following definition: “Skin failure is the state in which tissue tolerance is so compromised that cells can no longer survive in zones of physiological impairment that include hypoxia, local mechanical stress, impaired delivery of nutrients, and buildup of toxic metabolic byproducts"(Levine, Adv Skin Wound Care 2017).

Skin, the largest organ of the body, performs a variety of complex functions. If skin no longer fulfills its role maintaining vasomotor tone, body temperature and water balance, and ceases protecting the body from infection and mechanical trauma, it is failing. In this model the KTU and SCALE are manifestations of skin failure. Skin failure can account for the high rate of breakdown in the setting of multi-organ system failure in the ICU, and wounds that occur at the end of life. By folding these observations into the spectrum of skin failure, quality deficit implications are removed and the terminology becomes more accurate.

Recognition of skin failure will lay the foundation for common nomenclature and open new directions for research. From a clinical perspective this terminology provides more accurate classification of an identified disease state that will facilitate data collection for research and improve quality measurement. In an era of data driven, outcomes oriented, value based care, it is time to create a unified approach to skin failure – a phenomenon that occurs in the course of acute and chronic illness as well the end of life when the body is shutting down. Identification of skin failure is especially important in the palliative care setting when the body is breaking down and cure is not the goal. 

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

Due to popular demand I am delighted to announce that there will be a second live presentation of Dr. Elizabeth Ayello’s and Dr. Jeffrey Levine’s webinar, titled Unavoidable Pressure Injuries, Terminal Ulceration, and Skin Failure: Where Are We and Where Are We Going? at 3:00 PM ET on Thursday, November 16, 2017.

This webinar will review the evolution of concepts regarding unavoidable PI, terminal ulcers, and skin failure and define current concepts and terminologies as they exist today.  This webinar will also review the evidence for each concept, state current CMS regulations and guidance regarding these concepts and suggest a path for the future.

This second live session is available to the first 2,000 registrants so register today!  1 hour of multidisciplinary CE is also available!

For more information on the webinar and how to register please visit:

If you are unable to attend the live webinar or are interested in viewing previous webinars that were presented in 2015, 2016 and this year please visit the following website to access the recordings and handouts:

Read more »

Friday, October 27, 2017

Implicit Bias and Its Impact in Geriatrics, Hospice and Palliative Care

On this week's podcast, we have invited Dr. Kimberly Curseen to talk about how implicit bias influences us as providers in geriatrics, hospice, and palliative care, as well as the role of that cultural competence and cultural humility should play in our practice.  Kimberly Curseen, M.D. is an Associate Professor of Internal Medicine at Emory School of Medicine and Director of Outpatient Supportive/Palliative Care, Emory Healthcare.

Here is Dr. Curseen introducing implicit bias in the podcast:
"The way I like to think about it, implicit bias is the subconscious thoughts that we have that actually influence our behavior and we do this all the time. We're not completely conscious or behave in conscious ways about our environments. It's that first reaction, that first thought or assessment that we make of a situation or a person, that informs the way we behave. The explicit bias is when we're actually conscious of our assessment of a situation or of a person and then we behave based on what our preconceived notions are, or our thoughts. Everyone has implicit biases and they impact us all the time, 24 hours a day. It's part of how we function in the world."
Another  great resources on implicit bias includes Dr. Curseen's interview with CAPC on the site "Palliative In Practice"

So to learn more, listen to the podcast, or read the transcript below.


Listen to GeriPal Podcasts on:

by: Eric Widera (@ewidera)


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

Alex Smith: This is Alex Smith.

Eric Widera: Alex, who is our guest today?

Alex Smith: Today our guest is Kim Curseen who is associate professor of internal medicine at Emory School of Medicine and Director of outpatient supportive and palliative care at Emory Healthcare. Kim, welcome to the GeriPal Podcast.

Kim Curseen: Hi, thank you for having me.

Eric Widera: We start off all these podcasts by a song request for Alex. Do you have a song?

Kim Curseen: Yes. I would like "Closer to Fine" by the Indigo Girls.

Alex sings "Closer to Fine" by the Indigo Girls.

Alex Smith: For the rest of the song, you've gotta listen to the end of the podcast. We said I'd try that in a lower octave because I have a little cold, but I ended up going for it. I think I got a few of the notes, here and there.

Eric Widera: Kim we invited you to join us on the GeriPal Podcast because I came upon a CAPC, Center to Advanced Palliative Care, post. Actually on their blog,, where you discuss implicit bias and its impact on palliative care. I was hoping that we could talk a little bit about that, both how it impacts palliative care, hospice and geriatrics. Thanks for joining us today.

Kim Curseen: Thank you. I appreciate it.

Eric Widera: Maybe we can actually take a step back. What is implicit bias? Is there an explicit bias? How should we be thinking about this?

Kim Curseen: The way I like to think about it, implicit bias is the subconscious thoughts that we have that actually influence our behavior and we do this all the time. We're not completely conscious or behave in conscious ways about our environments. It's that first reaction, that first thought or assessment that we make of a situation or a person, that informs the way we behave. The explicit bias is when we're actually conscious of our assessment of a situation or of a person and then we behave based on what our preconceived notions are, or our thoughts. Everyone has implicit biases and they impact us all the time, 24 hours a day. It's part of how we function in the world.

Eric Widera: Are there any clinical scenarios for our readers who tend to be sort of more clinically minded, that you come to mind where this has been an issue?

Kim Curseen: Well, you think specifically about your older population. I think it happens all the time. You know you walk into the room and you see a patient and their child, and the natural tendency is to talk to the child. Even though you don't mean to, you kind of talk to the patient like, "Hi, how are you?", and then once you get into the meat of the conversation, instead of having this sort of triad conversation, you end up having this diad conversation and the patient's sort of left out and you don't mean to, you just assume or you make assumptions about, just subconsciously. If you have a husband and wife there, and maybe they're an older couple that you end up talking to the man or directing your conversation and you have to be very mindful not to do that.

I said in the blog that I work with a really great male nurse and often when I walk in the room with him, the patients look at him and I see this like fight, they're like, "Why am I looking at him? She's the doctor." They'll even say, "You're the doctor." These are just the things that happen throughout the day that if you're not kind of mindful of them, impact the way we communicate with patients, cause us sometimes to miss critical points.

Alex Smith: There are all sorts of implicit biases, right? I've taken the implicit bias test.

Eric Widera: There's a test?

Alex Smith: There's a test. Kim, could you tell us about the test?

Eric Widera: Is it something you pass?

Alex Smith: Right.

Kim Curseen: No, there are lots of different tests for implicit bias, but the test basically asks you series of questions and I'm not sure which test you actually took, Alex.

Alex Smith: I took the one out of Harvard where you have, you hit one key on one side of the keyboard and one key on the other side of the keyboard, associated with an image on the screen. For example, I most recently took the one about young and old people, and it would be young and good on one side of the screen, and old and bad on the other side of the screen. Then you cycle through words that were meant to either good or bad, and then they'd flip them so that you'd have the young and bad, and old and good sort of words together, and they time your reaction between seeing the image and inputting the correct key. It was more, I have to say, I'm in the vision of geriatrics here. I had a strong preference for young people, which conversely stated is a strong preference against old people.

Kim Curseen: Well, that goes along with our culture. I mean that's what you're taught, that's what you're ingrained with. We to start people got to know the white coat isn't magical. There's nothing magical in being geriatrician or palliative care doctor who really feels very important about patient centric care and advocating for your patients so that's what you do. Your implicit bias is kind of there so you can think what you like and feel the way you like, but it matters how you translate it into what you do. If you recognize that, that's the case, then you do things very deliberately to try to overcome those biases. You recognize when maybe you are talking to the patient's family versus the patient. You recognize your feelings about going into a room maybe with a frail elder that's not able to talk and how you're going to manage them or how engage or how much you actually try to engage that person in the conversation. We all have these things and the question is, now that we have them, what do we do about it?

Alex Smith: Right. Right, so much of it is about, in taking this test, we were joking early about can you pass? Like I failed, but the point of the test isn't pass or fail and it's not passing judgment on you. It's really about, I think a lot of this is about, isn't it about the sort of the environment in which you grow up in and the fact that we pick up all of this sort of cultural residue, which imparts a bias in us against old people and in favor of young people because we're constantly bombarded with messages that youth is desirable and good, and aging is to be avoided and bad, and that seeps into our subconscious and it comes out and can be actually demonstrated via this test, but it's not anything that like I should, I get an F for.

Kim Curseen: I mean, it just tells you what it is and so there's no way for you to ever address anything if you're not quite sure where you are. Participating in test like that should be a tool for self reflection and you can see, "This is my unconscious bias, so how is that manifesting in my practice or even is it manifesting in my practice? And then what are those deliberate behaviors I can employ to make sure whatever my unconscious bias is isn't filtering down into my practice and getting in between me and good care plans."

Alex Smith: I think it's really common sense that the first step would be awareness of implicit bias. That makes sense.

Eric Widera: Let me ask you about the first step then is. The first step is awareness. What are the common implicit biases that I should be thinking about to be aware from, because I can imagine there, there's a lot.

Alex Smith: Right, in particular, there are clinical care in geriatrics and palliative care.

Kim Curseen: Sure. Again if you're helping to work with the population that of course, the larger ones that are different in ethnicity, financial, educational, personal background, religion, political, all of these things that make up all that patients that we're seeing and because when patients come to the office, we in geriatrics and palliative care, a lot of what we do is talking, sort of getting to know people. As you're getting to know people, they're not just sticking to their disease states. They're letting you into different aspects of their life. If you have a patient that comes in maybe and they are dressed what we would consider shabbily or they come and they have a history of drug abuse or alcohol abuse, or they come and express views, political views. That happens quite a bit in my clinic, about what's going on in the world because they're talking to their provider, they feel free to talk to you.

All of those things, we're developing a natural dialogue so if you're aware, you understand yourself and you spend some time trying to figure out, what are the things that trouble me? What are the things that are keeping me? When a patient says this or they look this way, what are my responses? We all have those things like there, I always lack because what bothers somebody doesn't bother another person and even your most wonderful accepting people have that thing, we all have that thing that we have a difficult time abiding. All have that thing that strikes us at our very core whether we are aware of it or not.

Alex Smith: The first step is awareness. Now after awareness, we can try and overcome our implicit biases because we want to strive to overcome them. We believe that we should be treating old and young people similarly. We believe that we should be treating men and women similarly. We should believe we should be treating people of different ethnic, religious backgrounds similarly. Is there any evidence to show that being aware and attempting to overcome it, is effective? In other words.

Kim Curseen: Yes.

Alex Smith: Yeah.

Kim Curseen: There are signs that show that once physicians and healthcare providers are made aware of their biases, that they have the ability to change them. That's the beautiful thing about in implicit bias, that you can, if you are made aware of it, that gives you the opportunity to employ techniques to change it. There's this really wonderful test that showed people pictures of African-Americans and when Caucasian people first looked at these pictures, they all looked the same, had very difficult time trying to distinguish, but being shown the pictures repeatedly, they were able to start to pick out specific characteristics. Then it became more personal and so by the end of the exercise, I was able to show that in the beginning, everybody sort of looked the same. By the end of the exercise with repeated exposure with the person actually being aware, they were actually able to make distinctions and it seemed more personal so the idea who you setup the idea of being area, that this could be an issue, gives you the ability to transform and change. When people are doing diversity training or implicit bias testing, that's the basis.

Eric Widera: As providers, I'm going to give an example. I'll give an example on a far spectrum. Somebody walks in and let's say it's a patient I'm caring for on our palliative care service and they have a tattoo of a swastika on their shoulder.

Kim Curseen: Yes.

Eric Widera: I will have an implicit bias right there automatically the second I see it.

Alex Smith: You might have an explicit bias.

Eric Widera: I will have both the implicit and explicit bias. How should I react to that? I'm going to have an emotion, and that's probably in the color how I think about this person.

Kim Curseen: Yeah, actually you're a human being. You get to have those emotions so what I think is really important is to be mindful of it. What are you really upset about, because you walk in, you see the swastika on the patient and do you know at what point in their lives did they got it? What do you actually really know about that patient other than that you see that there? We actually don't so what we're reacting to is how that makes us feel. As an African-American woman, if I see that, then that brings up issues of fear and anger and frustration, until I have all of these emotions that have a lot to do with me, but not so much to do with them.

Once I'm able to recognize them, I'm able to recognize, "Okay, this is my issue and I'm okay to feel like this so am I going to be able to do what I need to do?", because once you're able to name it, then you're able to compartmentalize it and say, "You know what, this is how I feel so I'm going to need to pay in order to take care of them." I'm going to need to, instead of relying on my natural communication style and the natural, the things that are actually warm- warm and fuzzy and, that's not going to be automatic so I'm going to have to be very deliberate in my behavior. Deliberate in my questions about asking about concerns, deliberate in my body language and being very aware of myself when I'm talking to this individual to then try to do some perspective taking about figuring it, well, what actually is the story. If I walk in the room, you have a Swastika on your arm, they don't get up and leave, then maybe things are all right. Maybe that was a time in their life that they regret. Maybe they actually feel that way but they're in trouble now.

Am I going to be able to do this? Then I also have to be very honest with myself. If I cannot do this, then I need to own that too and be able to get them to a person who can, but none of that happens unless I do the work upfront. I'm realizing number one, what's tattooed on their arm is what's tattooed on their arm but what I'm going to through is my issue and has something to do with me, and I need to work that out because that patient can't work that out right then. Does that make sense?

Eric Widera: Yeah.

Alex Smith: I think it pushes it to yet another level when they make racist comments towards a physician that changes the stakes because then you're not talking about, it's not less of a question about, "Well, you know, is it possible that they regret having this tattoo? Was it a mistake? Was it done on a dare?", whatever, to okay, now this person is really into it and they clearly believe or clearly stating sort of aggressive racist language. Anyway, we digress.

Kim Curseen: You know, but that brings up a very good point and say, like love gum palliative care, not palliative care for super awesome people or palliative care for non-racist people.

Alex Smith: Right.

Kim Curseen: I mean everybody gets this. The qualifications about who the character or the person isn't in the definition and there's a lot of time to work out, a lot of time for social injustice, but we're in a different sphere. Not here, not here, this is the time in people's lives, depending on where they are that they get care regardless of their background so I kind of think about it everybody walks in clean and you get to have this because you're a person that exist. That's the qualification and that's how I've been able to sort of navigate it and get through it because I'd be honest with you, I've heard some stuff over the years, I continue to.

Eric Widera: Yeah, so we talked earlier about how culture influences like our implicit biases around age, gender, race. I'm just thinking about research publications that come out, like African-American's use less hospice care at the end of life and how those publications also potentially influence how I think about a particular group like African-Americans and hospice use. How should I be incorporating that information and thinking about it when I meet individuals of particular groups?

Kim Curseen: Now that's a really great question. Yeah, you watch things like on CNN and it's like, "Oh, African-Americans love Cheetos.", and I'm like, "Oh, gosh, I love Cheetos, I didn't know that.", like I've been, I know, I go to these lectures and I'm taking notes. I'm like, "Dang, is that what we believe? I did not, nobody told me that in the meeting."

Eric Widera: I like Cheetos.

Kim Curseen: The larger point is that those studies are trying to help us with cultural competence so giving you maybe some background and the way you should think about them is that when you are interacting with people and you're getting to your block points and you're trying to figure out, well, why is it like that? What is it? What sort of the disconnect? What could be the reasoning? How might they be sort of working through these problems when you're thinking about populations and how to develop educational materials. Things kind of on a macro level, how do you develop services that are going to really serve a community? However, when you get down to person to person, then cultural competence may not be as helpful as something called cultural humility. Cultural humility is the ability to meet another person and despite all the things that you heard, still be able to be open to allowing them to tell their own story and allowing them to define themselves in the way in which they define themselves.

I always use an example, me and my cousin. When you think about how I define myself, if you ask me, "Kim, what are the three things that make you, you?" I'll probably say, doctor, service and probably now mom, but I might have said African-American.

Eric Widera: I thought you were going to say podcaster.

Kim Curseen: Not podcaster. If you ask my cousin who, we were raised very similarly, she might say Native American, because we belong, we have family that belongs to a tribe and no, I define myself as African American. She defines herself as Native American. She might say, writer or mystic. All the things that are kind of important to her, but we're both raised the same way so if you come and talk to me and you assume that we think the same way, there are going to be barriers kind of in the way and way we relate. If I'm seeing myself first as a doctor and you're talking to me about end of life issues, I probably want to know what the statistics are, right? That matters to me. How was this working, and that's the conversation you could have, the sort of medical detailed conversation about the pros and con, and I might make my decision that way.

If you talk to my cousin and you start talking to her about the pros and cons, she's like, "No, the universe is going to take care of it. No, I understand what you're saying, but it's very important to me to do it this way. All the medical information, the world, not going to make a doggone difference.", because that's not the way she defines herself. Then, oh, my gosh, if you start talking about just deviant and maybe there's a mistrust. That's a reason why she wants you to do everything then you've really missed the boat because she doesn't even define herself as African-American, but we're very close. This happens a lot with religion. All kinds of things.

I always laugh, if you speak to my brother, my younger brother in Ebonics, you're the coolest person alive. You speak to my other brother, he's offended. The question is, we can all be, even people who look like you. People in your neighborhood. It depends where we belong to a lot of different cultures and a lot of different groups and throughout our lives. The importance of these things shift and change, and even when we're stressed, how we might define ourselves when we are well, what's important to us when we're well like maybe logic and science and money and status, and then you get sick. Then maybe religion and spirituality is more important. The conversation shifts and the way that person that you've been taking care of all this time, is now making decisions that you don't understand. You don't understand them because we're being competent and be culturally competent, this is how they should make it according to the book of, their book of ethnicity.

I read the chart and that's how they should do it, but right now, they are defining themselves differently. Their ethnicity is moved down and something else has taken its place and the only way you're going to know that is by talking and asking questions and being open, to recognizing that you don't know everything about a culture, how somebody even views it. Even people within the same culture or the same religion or the same political views, hear things from the pulpit or read their topics and interpret them slightly differently because they have different meaning. One thing I think is really important that sometimes people will use the different cultures or the different way they identify themselves, just sort of cope with situations. We sometimes think that here's the culture and then you're going to behave the way because of the culture versus this is how I feel. Now I'm going to take my culture and wrap my culture around that to help me deal with what I'm feeling at the time. Do you guys have time for a quick story?

Alex Smith: Yeah.

Eric Widera: Yeah.

Alex Smith: Tell us a story, Kim.

Kim Curseen: This is one of my favorite of all times because I learned a lot, that he was taking care of a Muslim family from Yemen and the father had Jakob-Creutzfeldt Disease and it was moving very, very fast and the hospital was amazing. They allowed him to stay in the hospital. They took great care. They didn't want to rush the family but it was clear that he was declining and that we were not, this was going to, we were not going to be able to save his life and everybody desperately wanted. This is three months in the hospital. Everybody desperately wanted to make him comfortable. People were worried that he was suffering. The hospital had been very lenient because they were trying to be respectful so they had, finally we were going to have this big family meeting. The wife kept saying, "No, we need to keep going. I don't want him to leave." Even her children were saying, "Mom, maybe we should.", and she's like, "No, no, no."

They got an imam to come and very prominent person in the Muslim community to come into this family meeting with his wife and his sons and the imam said to her, "It's okay. I think we should make him comfortable." I mean you would have to see what we were looking at, and everybody was just assuming that she was going to say, "Yes, okay then it's fine. I've heard from my religious leaders. I've heard from the men in my community. My son believes this." Do you know what she said?

Alex Smith: What did she say?

Kim Curseen: She said no. She sat there and listened, because that was not the point. The point was, and we had been listening, was that was her husband and they'd been married over 50 years and she didn't know what she was going to do without him and she wasn't ready. When she was ready, then we took him home with hospice and it wasn't until then. You know, that's a basic thing that we all kind of understood but we functioned on and we behaved as if that the only thing she was was a Muslim woman and we forgot that yeah, she's a Muslim woman but she's also a wife and she's also a mother and she wasn't ready to lose the love of her life.

Eric Widera: What do you think we could do as geriatricians, palliative care, hospice providers to actually make sure that we have room to talk about all those things that influence how they make decisions, all those things that they care deeply about?

Kim Curseen: The biggest thing is to ask and when we were doing the social history, when you first meet somebody, the beautiful thing about doing outpatient is that you end up, you have time and you have time to get to know people so when you are discussing all their medical issues, finding out, "Tell me about yourself. If you were feeling better, what would you be doing?" All the things you can learn in palliative care, geriatrics to ask what's important to you but in a conversation away, you share the pictures, you learn about the children, you ask about the family. You ask, you make a concerted effort to find out who they are but the deal is you also have to show a little bit of yourself as well. We work really, really hard in medicine to kind of come up with checklists and protocol and if we come up with the right checklist, this is all I'm going to do well, but the true magic I think in palliative care and in geriatric care is really the care. What people are responding to is at the end of the day, it's just two people in the room and they need help and you've got help and it's a relationship.

If you're going to approach it that way, it gives you valuable information about the person. When you're not sure, ask. Hey, you're deciding to do this. Help me understand why.

Eric Widera: Right, don't assume.

Kim Curseen: Right, and when you ask that question and then usually I say, "You know what, please help me understand why because I want to support you and if this is how it has to be, I'm never going to lie to you if I don't think it's a great idea but at the end of the day, I'm here to help you reach your goal whatever that goal is." Sometimes, I say, "I'm down.", depending on who I'm talking to but that's really what it is to create a relationship. They know that push comes to shove, you have their back whether they choose what you want or not. You're willing, you're open to it. It doesn't mean you have to agree, but you would have, if you're going to practice this kind of medicine and be true to what you say you are, you have to be willing to practice when it's easy and when it's more difficult, when it goes against your grain sometimes and if a person's a lot, or how you want it to be.

Eric Widera: I can imagine in the case that you described is sometimes just asking how does your religion make you think about your husband's care or what you should get? Just throwing out a tester.

Kim Curseen: Yeah, and people will answer you. One thing people love to do is talk about themselves. If you are sincere and authentic and you are asking, they'll tell you.

Alex Smith: Yeah, and curious.

Kim Curseen: Yeah.

Alex Smith: I got one last question for you. What you told us to do a thing about implicit bias, like being mindful of it, naming it, working kind of through how you want to respond, it feels like a lot of work too. Do you have a ritual or something that you do before you go into a patient's room to help you remind yourself to kind of do that work?

Kim Curseen: Yeah, yeah. Right before I'm able to go into a patient's room, especially if I'm worried that maybe it might be somebody that pushes some internal buttons because of my own baggage, I'll often stop and take stock of how I'm feeling and all the things in my head I want to say, I say them. Outside, I look really quite calm but I'm saying this, I'm actually arguing, I'm definitely down and I get all that out. Then I take a few seconds to know, to think about what am I really mad at and I think that's really important. You do have to take a minute to sort of get your mind right, "What am I really upset about?" If I can't walk in the room, then I don't walk in the room right then. That's hard because we all have time pressures, but if you take all that in there with you and it goes wrong, you know how hard it is to sort of in our profession to kind of recover from that if the interaction was bad.

I do that. When I'm actually inside of the room, I spend a good portion, a lot of time and energy in being very aware of my body and my body language, so if my inclination is to pull back, I actually lean forward. All the opposite things that I'm to do, like I'm in Bizzaro World, I end up doing the opposite. One of the things I like to do is if I'm really uncomfortable, I'll sit but I'll put my hands under my thighs and I can gauge that when they're starting to say something and I'm about to pull back, I can feel the pressure and that tells me to move forward.

It sounds like it's a lot of prep work but for me, it allows me to be conscious and aware and I'm constantly checking. I'm checking and I'm going through, almost like going back to palliative care one on one, do this, are you doing this, are you doing that. After a while, if the behavior's deliberate, then I can start to relax. The other thing, the mental exercises, what is the thing we have in common. You're about to walk into a room, what is the thing we have in common? I know. We all want, who's ever in the bed or who's ever sat in the chair to feel better. Okay, so we have something in common.

Now we may not agree with how to get there but we got that in common. If you're there working for that purpose and I'm working for that purpose, there has to be a middle ground. There has to be a middle ground and that allows me to open my mind. If I walk in there with an agenda that it has to be a certain way, it fails, but if I walk in with an open mind that we have to get somewhere and I'm willing to give, and it's a negotiation and it's a partnership, then all that pressure that I feel to get them to my side, all that kind of goes away and now, I'm aligned with the patient or the family to reach a purpose.

It doesn't have to be my way but it has to be a way and then make the decision. Whatever that way is, then we're invested and no matter what it is, we're going to do what we can to make it work.

Eric Widera: Well, I want to really thank you for joining us today.

Alex Smith: Thank you so much, Kim.

Eric Widera: I encourage our readers, go to the CAPC website to read a little bit more. We have some other great stories and tips on that blog site. Alex, do you want to finish this off with a little song?

Alex Smith: Let's do it.

Eric Widera: Okay.

Alex sings ìCloser to Fineî by the Indigo Girls.

Kim Curseen: That was great.

Read more »

Tuesday, October 10, 2017

Gretchen Schwarze on Uncertainty, Scenario Planning, and American Pie

This week's GeriPal podcast features vascular surgeon, researcher, and bioethicist Gretchen Schwarze from the University of Wisconsin.  We talk with Gretchen about her recent NEJM paper titled, "Managing Uncertainty: Harnessing the power of scenario-planning."

What is scenario planning?  Does it sound like something a lawyer would talk to you about (a la "estate planning?")

Here is Dr. Schwarze introducing scenario planning in the podcast:
The idea behind scenario-planning, which is what our paper is about, is that it's not just about showing the limits of what's possible, but also the story that unfolds along the way. I agree with you, physicians hate this idea of uncertainty, because we don't want to be wrong, but we're not asking people to be certain. What we're asking people is to tell a story that's plausible and that shows that there are limits on what's possible to happen.

It's not just where you end up, but the different things that will happen along the way, because if I think about my patient in the ICU who is in respiratory failure after surgery, I don't know how that's gonna go. He might get better and he might not. But I have to tell you, if the respiratory failure gets better, I can tell a pretty solid story about that's gonna look like and how things are gonna be six months from now, a year from now, based on what I know about the patient. If the respiratory failure doesn't get better, I can tell a pretty good story about that as well.

We're not asking people to predict the future, but rather to tell a story that allows patients to understand a series of events that are likely to happen, once you've identified where there's uncertainty. 
That should tickle your fancy for more, so listen to the podcast, or read the transcript below.

Of note, Gretchen would have joined in singing American Pie, but the Skype connection was sadly not conducive to musical ensembles recorded over a distance.  You'll have to catch us together at a meeting for live rendition!


By: @AlexSmithMD


Listen 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 do we have as our guest today?

Alex: Today, we are joined via the Skype line from the University of Wisconsin, Gretchen Schwarze.

What? Eric just said something.

Eric: No. Did I?

Alex: He just gave me a look like, "What did you just say?"

Eric: No, I was looking at the dials.

Alex: Oh, I thought you were looking at me.

Eric: No, the dials.

Alex: We're going to start over.

Eric: The dials. We're going to start over.

Gretchen: I feel like I'm on Wayne's World.

Eric: Yeah, you are.

Alex: Maybe we should include that. That's not a bad intro. Should we just keep going? Let's keep going, okay.

Eric: So, Alex, let's recover from our poor intro. Gretchen, we start off all these podcasts with our special guests giving Alex a song to sing. Do you have a song for us today?

Gretchen: Alex, can you sing 'American Pie'?

Alex: Alright, we're gonna do a little 'American Pie'.

Alex sings ‘American Pie’ by Don McLean.

Oh, we're gonna have to stop there.

Eric: Oh, I'm guessing we'll do more of that at the end of this podcast.

Alex: At the end of the podcast. To finish that introduction, today we have Gretchen Schwarze, who's joining us from the University of Wisconsin, where she's a vascular surgeon, an associate professor of surgery, she's a bio-ethicist as well as a surgeon. She wrote a terrific piece in the New England Journal of Medicine that we're gonna talk to her about today, it's titled, 'Managing Uncertainty: Harnessing the power of scenario-planning'. Welcome to the GeriPal Podcast!

Eric: And I swear, I'm not giving Alex a dirty look right now, Gretchen.

Alex: There's no dirty looks. I can't read your looks, I've no idea. Because we have the video off, we have no idea what kind of funny faces Gretchen is making towards us right now.

Eric: We can imagine.

Gretchen: I'm just joining in.

Alex: So, let's see, how should we start this off. You start off this paper with an interesting quote from Peter Drucker, 'The greatest danger in times of turbulence is not the turbulence, it is to act with yesterday's logic'. What is that about?

Gretchen: What is this about? I think this idea of how we make decisions often forgets that, when people are making decisions in healthcare, they assume that tomorrow is gonna be much like the day before. We forget that when people come in sick, the fact that yesterday is not gonna be what happens in the future isn't really something we talk about. We use other types of language and I think people sort of still hold on to where they were before that, they need a frame shift, in order to really understand the context of what we're talking about.

Alex: I'm busy searching ... We have to cut this out, we're gonna cut this section-

Gretchen: Is there a lot of editing involved in this-

Alex: There's a lot of editing, there's so much editing-

Eric: Although, if it's funny, we're gonna keep it in.

Gretchen: I don't think people want an hour of me laughing.

Eric: We actually find the more humor in our podcasts, the better it is.

Alex: Isn't this already better than ... You also did a podcast with NEJM, right? For their author-

Gretchen: I have to say, the tone was really different-

Alex: Wasn't it different, see? There was no singing, there's no laughter-

Gretchen: No, but there was a lot of sweating on my part that was very nerve-racking doing that podcast.

Eric: Did you do this article as part of the podcast? I actually missed that.

Gretchen: Yeah, I mean, that's a really cool thing that NEJM does, they ask their authors to talk about their article, which is cool. But it's a pretty high-stakes thing, you get all about eight minutes, and it's not with somebody you know, it's with the editor of the journal. It feels very scary. And then it's over and you think, "Did I even say anything intelligible?"

Alex: Right. What I was looking up while we were kind of looking at each other was ... This quote also reminds me of a paper by Alvin Feinstein called 'The Chagrin Factor', that was published something like twenty or thirty years ago, probably more than that, where he writes that clinicians tend to act on the basis of their last mistake. They are acting with yesterday's information. Often, it's not just experience alone, but it's yesterday's bad experience in particular that guides them.

Gretchen: Yeah. I might say that this is similar and then also distinctly different in that we forget that patients with a lot of chronic illnesses have this life that they're living outside of the hospital. Someone that shows up with metastatic cancer and a new surgical problem, you think, "How could they not know this is going the wrong way?" And yet, they're living with it. We need to understand that they're coming at it with a different frame of reference, but also help them to understand this frame shift for them. That tomorrow is not gonna be like yesterday and so how do we strategically move forward in tomorrow without using the story of yesterday to misinform how the future is gonna move forward.

I actually think Joanne Lynn does the best with this notion about yesterday's logic. Her theory of it is that we have this mental model of health and wellness and that being healthy is being normal. And then you get an illness and then you're not normal and then medical care is used to fixed your illness and then you're normal again, which of course works great for appendicitis. But it doesn't work well at all for people with multiple chronic illnesses and it certainly doesn't work well for old, frail people with a surgical problem.

I do think that this idea of what was regular yesterday not being part of the future is a really important thing we need to get across in a way that people can understand it and not that we're banging them over the head with a big club about it.

Eric: I hear this every day working on the consult service too is, are we sure that they're not gonna get back to where they were yesterday, or that life is not gonna return to the way it was yesterday, rather than this new normal, it sounds like you're talking about. I heard it today, we never know. Yeah, he's in the ICU on multiple pressors getting CVVH and he just had a monstrous stroke, but maybe there's a small chance, I've been surprised before.

Gretchen: Yeah. There's a bunch of things you said there, Eric. The first is this idea of, when you talk about what this person is gonna get back to, all you're talking about is the outcome. You're not actually talking about the journey to that outcome. I would suggest that the story of how you get there, back to the way he was before, is as important as where you're gonna end up, because the story allows patients to understand what's involved. When I see there's a 5% chance of getting back home after this operation, I do not mean that there's a 5% chance of getting back home after this operation tomorrow exactly like you were yesterday.

The idea behind scenario-planning, which is what our paper is about, is that it's not just about showing the limits of what's possible, but also the story that unfolds along the way. I agree with you, physicians hate this idea of uncertainty, because we don't want to be wrong, but we're not asking people to be certain. What we're asking people is to tell a story that's plausible and that shows that there are limits on what's possible to happen.

It's not just where you end up, but the different things that will happen along the way, because if I think about my patient in the ICU who is in respiratory failure after surgery, I don't know how that's gonna go. He might get better and he might not. But I have to tell you, if the respiratory failure gets better, I can tell a pretty solid story about that's gonna look like and how things are gonna be six months from now, a year from now, based on what I know about the patient. If the respiratory failure doesn't get better, I can tell a pretty good story about that as well.

We're not asking people to predict the future, but rather to tell a story that allows patients to understand a series of events that are likely to happen, once you've identified where there's uncertainty. Uncertainty, at least for my patients, post-op in the unit is often about their respiratory failure.

Alex: These are post-op patients, right?

Gretchen: The storytelling we like to do is before surgery, because surgeons are all about this decision of 'should we operate or should we not operate'. In our mind, we liked the idea of using scenario-planning before surgery, so we can use it to help us decide whether to do surgery or not do surgery, or consider some other strategy. But you could imagine that you could use scenario-planning with a patient in the ICU where there isn't a decision to be made. Where you just start off with, "Your father was admitted to the ICU yesterday with a severe pneumonia, I'm not sure how things are gonna go. Let me tell you what might happen in the best-case scenario." And in the best-case scenario, you would say, "This respiratory failure gets better, but let me tell you what that looks like, if the respiratory failure gets better." In the worst-case scenario, it's something very different than that, the respiratory failure doesn't get better, but there's all this other stuff that goes along with it, not just the outcome.

Eric: Do you also then think about actually doing a more specific prediction, like which of those scenarios is more likely?

Gretchen: Yeah. I think that's actually a very nice way to use it, that's not how Peter Drucker and Pierre Wack, the economists we talk about in our paper use it, they're just trying to find a bunch of plausible scenarios. But I think for healthcare decision-making, it's really helpful to have a best and a worst and then to say, "Given what I know about you, given that before your dad came into the hospital, he was using a walker and he needed oxygen during the day and his kidneys were working, but not all that great, this is what I think is most likely. This is how I see things going."

So it doesn't you require to say, "I know exactly what's gonna happen," but it does help generate multiple frames of reference that allow people to understand the consequences of the context, meaning patients' health before things and then, how little events along the way determine the outcome.

Alex: Maybe for our listeners, some have not actually read the article, scenario planning. That doesn't sound very medicine-y. And you mention that it may have come from ... Is it economics literature?

Gretchen: Yeah. This is really funny, I think all of us spend a lot of time looking for better predictive models and nomograms. In surgery, we do this all the time, we love our risk calculator. I think the kind of information that we tell patients is all in this probabilistic language. Interestingly, in a lot of businesses they don't actually use that raw probabilistic language. For years, the economists were sort of held out as these people who were constantly misleading the managers.

If you have a business, like Shell Oil is the business where they started this, and so the economists say, "There's a 50% chance that there'll be a coup in Iran and there's an 80% chance that we'll find oil in blah blah blah." And what they did is, they took all of this probabilistic information and generated possible stories of what might happen, based on this information.

It's funny to me that this happens a lot in business. In fact, I was giving a lecture two weeks ago. I was giving the Memorial Art Lucas Lecture at Wash U, and Art's daughter Kate was sitting in the audience, and she said, "You know what? I work for the National Security Administration, you're doing the security planning. This is how we tell the government, how to use the data that we're giving them. We don't just say, 'There's a 50% chance that there's gonna be an attack in New York'. We get all the data together and then generate these scenarios, so that the people who are using this information can think strategically and plan ahead".

So it's kind of funny to me that this is not an unfamiliar thing in other disciplines and it is surprising to me that we haven't used it in healthcare, because you would think that physicians are kind of like the economists here. We're the people with this information and the economists are talking to managers, but we're talking with patients, so we need to help them interpret this information in a way that's usable. Instead, we just plop a whole bunch of statistics on them.

Eric: Are there certain fundamentals that you're supposed to do in scenario planning?

Gretchen: That's a hard one, it has this sort of blessing and a curse feeling to it, where it seems really easy to be like, "In the best-case scenario...", but actually generating these scenarios can be really challenging. And if you look at what they do in business, the economists spend like five months with loads and loads and loads of data, trying to generate a story, and here you are in the ICU with a little bit of data trying to tell the right story.

The way I think about it is, I mean I do think that having some sort of sign post with best, worst and most likely, is very helpful. And then I think about, what would it look like if everything went well? And if I know that I have somebody in front of me who's on a ventilator, who doesn't look like they're gonna get off the ventilator for a few days, I just start there. What does that story look like? Because I've seen a lot of people on a ventilator get better and I know what that's like, but they're not home the next day. So I use the stories from my experience to generate this best-case scenario, knowing that where the uncertainty is, is whether their respiratory failure is gonna get better. Does that make sense, it's really hard to explain.

Alex: No, it's great. It's almost like explaining this scenario using as few numbers as possible, right?

Gretchen: Yeah. We don't love using the numbers and a lot of people will be like, "Oh, I do that all the time, I just told some lady in the office that the best-case scenario is, she has a 75% chance of not getting off the operating table." That's not it.

Alex: 75% of not getting off the operating table. I can't even straighten that out.

Eric: I know you've talked to a lot of physicians about that and especially in academics, we don't even like qualitative data, we want quantitative data. How do people accept the idea of storytelling or interpreting data for patients?

Gretchen: The bottom line is that someone has to interpret the data and it would be nice if the people who... I have lots of patients that I say, "You have a 50% chance of dying from this operation, and I'll be honest with you, I have a real sense of what that looks like." And I have a sense of what that looks like when they don't die and I have a sense of what that looks like when they do die.

If I'm saying to the patient, "You have a 50% chance of dying in the operating room," and the patient, in turn, interprets that as, "I have a 50% chance of going home tomorrow after this operation," then we've really failed the patient to not interpret these statistics in a way that has meaning for them.

I hear what you're saying, everybody loves the numbers and we just need to be more precise-

Alex: They're comforting.

Gretchen: No, I think that the idea behind the numbers is that they're data-driven and it keeps us all on the same page so we all tell the same thing. But that's not what this does. This is something that allows us to say, "I have these numbers and I know these numbers, but I want to help you use these numbers. So let me help you use these numbers by interpreting them for you."

Now, conveniently, that's what the damn economists do, they're interpreting that data for the managers. I don't know why everybody's like, "Oh, this is so squishy, feely," I don't know any happy, squishy, feely economists, they are a hard bunch of people.

Eric: And I could also imagine that the worst-case scenario is actually not the 50% chance of dying in the operating room, because you don't see a lot of people actually dying in the operating room, do you?

Gretchen: Yeah, and actually, people like that outcome. Patients don't think that that's such a bad outcome, because you go to sleep and never wake up, but honestly, when I see that the surgery has a 50% mortality, I do not mean that people die in the operating room, I've been a surgeon for twenty years, I've seen four intra-operative deaths. I mean that you sit in the ICU for three weeks after you operation and we do all this stuff to you and you never wake up and finally, your family says, this is not okay and we withdraw life-sustaining treatments. That's what it means to have a 50% mortality, if they die.

Honestly, what it means to survive it, is a lot of stuff.

Eric: And that's what I really liked about your article, it's really talking about what the process looks like to get to the outcome that they're potentially hoping for, their goals, what's important to them.

Gretchen: I also think it keeps us from having to be right about the outcome. That it's the experience along the way that allow patients in the future to understand where you might be.

I think a lot of patients will say, "That best-case scenario is fine with me, I am willing to move forward and do this operation for that best-case scenario." But I think what strategy does, at least for surgical patients is, if things don't go as well as we hope for, they might recognize earlier on that, most likely, worst-case is where we're headed and say, "That was never okay with him. We talked about what that story looked like ahead of time and he was pretty clear that's not okay."

It does do this forecasting thing that allows us to get a little more insight about the patients themselves, because they can talk with you about those stories and how they feel about those stories, but it also allows us to recognize later on, when things aren't heading the way we had wanted to.

I worry, particularly with older patients ... You operate on them and they don't do well, but they don't do well right away. They just have a bump after a bump after a bump. It's like, "We just need to fix the pneumonia, we just need to fix the UTI, we just need to fix the bleeding stomach," and I think the families take a long time to understand that that is sliding very slowly and agonizingly towards an outcome the patient didn't want. Because they always assume that, and this isn't unreasonable because I think we help them assume this, that we can fix the pneumonia and they're gonna be right where they were before the pneumonia happened.

Eric: How do you handle scenario planning, if you're using best-case/ worst-case, you can talk about if, we go ahead with surgery what's the best-case/ worst-case. Do you also present the best-case/ worst-case of an alternative, of what if we didn't do surgery?

Gretchen: Yeah. For surgeons, every time we enter a room, we're like, surgery/ not surgery, surgery/ not surgery. That is our MO in the world. At least, when I talk to surgeons about it, we spend a lot of time thinking about surgery or another treatment strategy. And that other treatment strategy can be actually very broadly perceived from best medical management, or some operation that is not so complex, but potentially can palliate symptoms, it can be comfort-focused palliative care. I do like the idea that it shows two possible treatment strategies and then stories that go along with the two treatment strategies. I don't think it has to be done that way, but at least for surgeons, who are always thinking about a treatment decision, that's a helpful way to think it through.

Alex: How does this idea of scenario planning mesh with your prior qualitative work, where you described this idea of this surgical compact between surgeons and patients, that, if you agree to the surgery, you're agreeing to this entire post-operative course, whatever you say be damned, kind of like an Ulysses' contract, 'tie me to the mast, I want to hear the sirens, ignore whatever I have to say'.

Gretchen: I might not describe it quite that way, Alex.

Alex: It's so much more poetic when you describe it that way.

Eric: Wasn't it like a covenant?

Gretchen: That's a very long and complicated discussion, and I do think that ... We've spent a ton of time listening to surgeons talk to patients before major high-stakes surgical decisions and I certainly understand how this conflict in the ICU happens after surgery, because the surgeon has actually spent a lot of time really going through all of these terrible things that could happen with surgery, and the patient says, "Yeah, I want to do it." And so the surgeon misunderstands that as, "Oh, the patient's committed to these other things that would happen after surgery, like intubation and all of these other possible risks that I disclosed, the patient's up for it."

I actually don't think that's how the patient conceives of it, the patient thinks, "It's a risk, but driving in my car is a risk and it's not gonna happen." It's almost like a misunderstanding about what's possible after surgery and how tolerable that is for the patient and whether the patient is really willing to trade off some very burdensome treatment in order to reach a certain goal.

Those conflicts show up in the ICU, because the surgeon thinks that the patient had a specific goal and that that goal is still possible, and by agreeing to all of these risks, the patient has said, "Yeah, that burdensome treatment is okay with me as well." You could imagine that, if I told you a story about what happened when everything went well, and that story included a week and a half in the ICU, which is not unusual for some people who come in really sick and the patient said, "That's not okay with me," that the surgeon might say, "Huh. I can't get yo to this outcome without that. So maybe we need to rethink whether surgery is right for you."

Eric: And the sorts of surgery where scenario planning is most applicable are vascular surgery, because older patients are often multi-morbidity, frailty, dementia, disability, at-risk, also trauma surgery, any other areas?

Gretchen: Yeah, there is nothing that says it can't be done in other areas. As a researcher, I like the idea of checking it out, before we say, "Go do it."

We taught 25 surgeons here at AW to use scenario planning and our best-case/ worst-case communication tool, and they were cardiac surgeons, vascular surgeons, thoracic surgeons, acute care general surgery surgeons and then we had them do it with patients in our study. We had twenty patients enrolled in our study and they had all of those illnesses that you just described. We had patients facing TAVR, we had CABG aneurysms, a lot of frail, older people with acute abdominal processes, like colonic obstruction, that kind of thing.

We actually went to the patients' families after their decision, we went to their house to talk to them about how they liked best-case/ worst-case, and literally, people would just go and pull the graphic aid that it comes with, out of their drawer and say, "You know what, I was in the hospital, the surgeon used this and it really helped us."

Eric: Wow.

Alex: Wow.

Gretchen: Even Father Andrew, who is in this New England Journal article ... Andrew is not actually his actual name, we changed it, but he was a priest and his niece was very kind to interview with us three months after he died and she said that she took the graphic aid on a trip around the country to see family. She said she used the graphic aid to explain to them, why they made the decisions that they did about how to take care of him when he was so sick.

Eric: When we're thinking about scenario planning, best-case/ worst-case, I know you have a great video online, too, that we can see our best-case/ worst-case scenario and we can link to that, is that right? Is that online?

Gretchen: Yeah! If you just google best-case/ worst-case whiteboard video, it comes right up.

Eric: Great. Would you suggest that we use graphic aids in addition to verbal storytelling?

Gretchen: I teach it with a graphic aid and, invariably, I find myself in a room without a graphic aid using my hands, lifting up high, like, "This is what the best case is." Worst case is like down by my knees.

It's easier with a graphic aid, but I actually think patients really love having something to hold onto. And we taught it so that you jot down a few little notes next to best and worst and most likely, so that they can use it to remember things later. I think patients and families really love having this thing to hold onto, because it allows them to use the stories to communicate with other people, but also to communicate amongst themselves. It provides a really nice strategy to give them good recall about what happened.

I like the graphic aid a ton, I recognize how it can be a little tedious, but I think that the patients and families really get a lot out of it.

Eric: When I first heard about your best-case/ worst-case scenario, I started using it on palliative care consults. I actually think it's a very helpful framework. I never knew the term 'scenario planning' and that's what I was practicing. It's something that I want to continue to work on and actually do more, because I think that the storytelling part actually really resonates with patients, and also residents.

When I talk to residents about thinking about a case, what's the best case, what's the worst case, it helps them figure out, "Oh yeah, this is why we would do this, or this is why we wouldn't do this."

Alex: And they do have information to share with patients, they realize. The residents. Often they say, "I'm in a data-free zone, I don't know, there's too much uncertainty here."

Gretchen: Right. It helps us put boundaries around the limits of what's possible. I think people who are trained in palliative care can do this very naturally without much training at all, though it does require some sort of thinking about what it means to create a good story.

My colleague Toby Campbell here, he was just doing this in his office for patients with lung cancer, talking to them about chemotherapy. Then the two of us got together and were like, "Wow, we should try to find a way to structure this, that we can teach it to other people." It'd be really nice to take a syringe full of Eric Widera and Alex Smith and Toby Campbell and just inject it into everybody, but you can't.

Eric: That wouldn't be nice. Terrible idea.

Gretchen: This is a strategy that I think people can learn and I would say that some of the surgeons in my city, they weren't fabulous communicators, but they did a really good job with this. They really did things that I'm like ... I audio-recorded them and I want to just lift it up and show my mom, like, "Look what we did! Look at this boy, he's really getting it."

That's exciting to me, that we can develop the framework that other people could use, who aren't just naturally talented at doing this.

Eric: Maybe for me and our listeners, are there a couple of key parts of storytelling that we should keep in mind when we're doing a best-case/ worst-case scenario or ... Now I'm blanking out ... Scenario planning.

Gretchen: Yeah. Best and worst case you can start off with this idea of, what would it look like if everything went well. And worst case is sort of, what would it look like if everything went poorly. I actually think, most likely is probably the piece, where you really have to use sort of all of your clinical expertise to try and get that story right, which doesn't mean anybody is gonna hold you to the story, but that's probably the one that really requires some real tailoring to the patient in front of you.

I always think about, "Where are we now? What does the treatment look like, what does this thing we're proposing look like?" And then think through, "What does it look like in the short term? Where are they? What's their quality of life? What other therapies that could be burdensome are gonna come up?" And then follow it up at the end of this story with some sort of long-term statement about it, like, "Given who you are and given that you were just barely making it at home and you had bad COPB and you have this metastatic cancer, I really have a hard time seeing you get back to home. I think what's most likely, is that you'll be in a nursing home and what's most like is that the cancer is gonna catch up with you and we've got months."

You guys in palliative care are so good at giving estimates about survival that aren't so down and precise that people are like, "You're wrong." But I like this sort of 'days-months, months-years, years-years' kind of thing that you can use with most likely. Sort of really try to embed some prognostic information into the story.

Eric: And I really like how it forces us to remember, it's not just the outcome, best case he lives, worst case he dies. It's everything that goes along with that, the process.

Gretchen: Right. Although, that's how my husband conceives the best-case/ worst-case. He's a transplant surgeon, he's like, "Best case you live, worst case you die." "Oh, awesome!"

Alex: It's easy, I learned it. I'm a master at this technique!

Eric: Zero or one.

Alex: Zero or one, right.

Eric: We don't need stories! That's data, right there.

Alright, Alex, how about you finish us off. Gretchen, thanks for joining us today.

Alex: Thank you so much, Gretchen, that was terrific.

Gretchen: Thanks, guys. What a blast!

Alex: We pick up where we left of.

Alex sings ‘American Pie’ by Don McLean.

Produced By: Eric Widera
Read more »