Saturday, July 22, 2017

Bringing Community Partners Together to Improve the Care of Older Adults: An Interview with Anna Chodos

For this week's podcast, we interview Anna Chodos, Assistant Professor in the Department of Medicine and Division of Geriatrics at UCSF, about her work in creating the Optimizing Aging Collaborative. The collaborative's goal is to enhance and unify care of older adults in the community by creating a unique partnerships between public, human service, and academic organizations.

The Optimizing Aging Collaborative at UCSF, which was founded in July 2015 as a Geriatric Workforce Enhancement Program (GWEP) by the U.S. Health Resources and Services Administration (HRSA).  The collaborative includes a broad array of experts to provide education and innovative services that address older adults’ health, social, and legal needs, that hopefully other cities can replicate.

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Transcript of the podcast:

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

Alex: This is Alex Smith.

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

Alex: Today we have Anna Chodos who is Assistant Professor in the Department of Medicine and Division of Geriatrics here at UCSF. Welcome to the GeriPal Podcast, Anna.

Anna: Thank you for having me.

Eric: Before we start off every podcast we asked our special guest to give Alex a song to sing. What song is it today?

Anna: It's Operator by Jim Croce. It's an oldie, but goodie.

Eric: And I heard you're gonna sing, too?

Anna: Yes.

Eric: Okay.

Alex: Alright.

Alex and Anna sing “Operator“ by Jim Croce.

Eric: Wonderful. So, Anna, we invited you to come on today to talk a little bit about what you're doing with something called the GWEP. Many of our listeners probably have never heard of that before.

Alex: GWEP?

Eric: GWEP? How do you pronounce it?

Anna: There is a linguistic divide in this country that some are GWEPers, some are GWEPers.

Eric: Yeah, is it pretty polarized?

Anna: It gets a little heated. The last national conference was a little rough.

Eric: So what is the G-WEP/GWEP?

Anna: We are a faction of this country brought together by a funding opportunity at HRSA to fund geriatricizing primary care and social services in this country to better serve older people. I think many of us may be more familiar with the idea of big G, little g geriatrics and this is really trying to hit hard on the little G geriatrics of getting geriatrics knowledge and skills into more people in the health care workforce. And, in this case, also the social service workforce, without necessarily only focusing on developing big G academic geriatrics or specialty geriatrics.

Eric: And what you're doing is you're doing both. You're doing teaching here at the academic university, but what's really interesting is you're also bringing this out into the community and working with a lot of community partners to deliver primary geriatrics and primary palliative care teaching to them. Is that right?

Anna: Yes, and other GWEPer, GWEPers will feel similarly that the call for this funding really incentivized people to do that, to be creative, to do integration between health care and community. And everybody's has looked different. There are 44 across the country, so many states have them, many cities have them, but it really incentivizes us to create reasons to work together, reasons to improve care for older people across those two service areas for older people. And the way it looked in our world, and I think probably ... I've not been here that long, but what I understand is that a lot of us have been working with community partners for a long time to try to improve care for older people or get more services for older people.

That's just such a part of what we do and how we keep older people healthy and well in the community that there was a lot already there to build on. But the really wonderful thing about this particular program now is that that's what we're supposed to be doing is working together, meeting regularly, having shared goals, having shared vision and outcomes around improving care for older people. So we work with Alzheimer's Association. We work with other non-profits like here in San Francisco, Open House, which serves and runs programs and does housing for older people who identify as LGBTQ. We work with Homebridge, which is a training organization for caregivers, usually funded by in-home supportive services. And we work very closely with probably the biggest partner, which is Department of Aging and Adult Services, which is our triple A here in San Francisco, or the way most of our social services are coordinated for older people, especially low-income and vulnerable.

The reason some of those partners are part of this particular program is the people we serve. Here in San Francisco we really wanted to make sure that any programing we were doing in any girding of our system and safety net for older people was gonna address the people that we have here and that's largely immigrant. Over half are three times the federal poverty level or below, which here is significant because it's a very high cost of living area. Of course, very notable and proud LGBTQ community. We also have about 30% of older adults who live alone.

And then a big call within all the GWEPs was to try to focus on adults with dementia and related diseases, so we've done that as well, but that's certainly a natural focus for us. We know that those are vulnerable older people. Hence, partnerships with Alzheimer's Association, DAAS, and Open House.
Eric: What do these partnerships actually look like? What does it mean to partner with someone?
Anna: Lot of exciting emails. No. Really it means meeting, it means going to their organizations, it means talking openly about how can we both do things that will advance our shared goals. Should we look for funding together? Like, working together.

Alex: Could you give an example?

Anna: Yes. And then the other thing is, sorry, is, of course, we do a lot of trainings together. We actually work on developing the bread and butter of what we're doing and trying to build competency in working with older people is knowledge transfer or teaching. We can probably end up talking a lot about whether or not that's the only thing we need to do, but that's where we're starting for the most part. And so we're working a lot with, for example, Alzheimer's Association and us to train another partner organization.

Sorry, we actually have so many that sometimes I forget to list them all. Little Brothers Friends of the Elderly, which is an international, or at least national organization that is a volunteer visiting program for isolated seniors. With them, Alzheimer's Association and us we sort of take turns and collaborate on training on topics, specifically more related to dementia and helping them work through a program that they're developing to address the needs of older adults living alone with dementia.

Because that has previously been challenging, especially when people don't have the skills or feel intimidated, as it were, by working with older people with dementia, and they know that's a highly vulnerable group so they were really invested in learning more about dementia and how to work with people with dementia and develop a program within their own organization of being able to do more outreach to them. They have a name for this program, Elder Navigator. They're working with other faculty at UCSF. It's a big program with a lot of tentacles and we get to get in the mix and help do some of the education and competency and self-efficacy building around working with older adults, so that ultimately those older adults will get more connected.

Eric: So there's a lot of talk in geriatrics and in palliative care about doing primary geriatrics or palliative care, which is often teaching primary care doctors and frontline health care professionals about how to deliver either one of those topics.

Alex: Although I think there is a distinction there in that when we talk about primary care, palliative care, it's usually like the primary care physicians or the oncologists. It's still a layer of, for the most part, physician specialists we're training.

Eric: Yes, and not community providers.

Alex: And not community providers, so this is somewhat distinct. This is almost a different level. It's like there's tertiary, secondary, primary, palliative care, and then very like what is zero?

Eric: Or maybe it goes to quaternary, like it's the top level. The thing that all of us should be trying to achieve or strive for is actually getting out of just this ivory tower, the physician's office, and into community partners 'cause they're the ones delivering the most amount of care.

Anna: Well, the thing that we've heard a lot and is, to me, totally at once sort of mind blowing and inspiring is the people who are absolutely on the front lines. In our community we have a bunch of, oh boy, aging and disability resource centers and these are meant to be little community hubs that people can walk in and get hooked up to resources or learn about stuff. Not necessarily get enrolled and do a bunch of paperwork, but just get some information. And a lot of the absolutely front line people feel like they need more help knowing how to work with older people. Just the basics like how do I talk to somebody who constantly comes in and tells me she's worried that they're poisoning her water? What am I supposed to do about that? Who am I supposed to connect with? How should I be responding?

Alex Can I ask a question?

Anna: Yeah.

Alex: How should they be responding?

Anna: Buy lots of bottled water and ... No! One thing is you need to know what the community mental health resources are. You need to be able to respond affectively and not necessarily to the content of a delusion. I know there's some skill there, but understanding that the person, if they weren't doing that the week before might actually be ill and reaching out to others to see, "Hey, maybe you should go see your doctor. Where is your doctor?"

But just the basics of what's dementia and how is that different than normal aging. It's not normal aging. Some of these pretty basic concepts. How might a mental health disorder look differently?

Eric: In an older adult.

Anna: And then again, we're all constantly learning about new resources from each other and the partnership. Through meetings, through having discussions about new training needs that we've identified because we did a training and somebody came to us saying, "Oh, we'd love another training in x, y, z." Talking to partners and then finding out, oh, there's this other organization that works on training people on pulse forms or advanced directives.

It's actually been really humbling to realize as a provider I do general primary care and geriatrics. I often feel alone, like why aren't I getting this person connected to services or even social workers who I work with constantly are having trouble. And then I talked to some of our partners and realized there was 10 other things we could have tried to connect that person to.

So I've realized we actually are in a, particularly here in San Francisco, a resource-rich place. That's not necessarily our problem, but the connections aren't happening and sometimes some people aren't recognizing things like maybe elder abuse or self-neglect or early dementia and aren't connecting people early enough or helping out enough. 'Cause a lot of times people hand you a pamphlet and say, "Call this place to get a caregiver," and there's a missed connection and nobody ever figures out why and it's because they have undetected cognitive impairment or whatever it is.

So I know I'm saying a lot of words, but I think generally the thing we're learning is that people want to serve older people really competently, really well, of course. Everybody who's gone into a social service field or a health care field has pride in the work that they do and wanna be doing a good job. But there's a lot of missed opportunity with older people not knowing what you don't know about very common things that affect older people and how you could connect them.

It is less glamorous than richly physiologically describing or medically describing a geriatric syndrome, but a lot of this basics and social service resources is extremely helpful and we get a lot of great feedback from people when we're able to train them.

Eric: We're probably not alone that we live in a city where there are these resources, but many of us, including myself, may not know what they all are. Do you have any hints or tips or tricks or lessons that you've learned over the course of the last couple years on how we can build those connections?

Anna: I think one is, and we're certainly doing this now, is a bit of inventory. Spending some time learning what's out there. I think some cities have done a better job in terms of creating usable central resources and I know that that's in motion and that's by no means our work. But encouraging social workers ... So a lot of places aren't gonna have geriatric social workers. We don't. So encouraging them to learn a little bit more about key issues with older adults and that would be particularly caregiver services and eligibility. Things to keep them independent in the community because that's what matters to older people, or adult day health programs, and long-term care issues.

That comes up a lot and you'll often get people saying, "Okay, well. We were thinking this weekend we would put her somewhere where she can be cared for better than we can care for her," and you're like, "Well, that's gonna be six more months." But encouraging people to learn ... I think people have to know what they don't know and know that they need to ask and learn. Of course, we like to show up and offer to do some teaching, too, and leave behind some resources.

Alex: Yeah, some would say, "What are you, a doctor, doing, doing this? What isn't this the domain of social work?" What's your response to that?

Anna: I think it's, for most of us in geriatrics, we know that the social determinants of health are half of the battle in terms of keeping people well and having a high quality of life. I don't think we can shut that out. I also think it means a lot and sometimes takes a lot to get to a place where some of these big resources are needed, so let's talk about what another living arrangement might look like or let's talk about what taking away driving responsibility might look like. And I don't think ... I agree ...
First of all, none of us have time to do all the things we're supposed to be doing in primary care and we all know that. So to add on, "I'm gonna counsel you now on caregiver educational strategies for dealing with dementia behaviors," which, at end of the day, is the most important thing you could do for that person and that family if there's dementia behaviors, is just not feasible and practical. But if you don't even know where to start, you're definitely missing an opportunity. I think you need to have at least a passing knowledge of some of these things 'cause it is the biggest issue facing that family and that patient, and the biggest thing you could do for that person's well-being is probably to address some of that stuff.

Alex: But really why a doctor?

Anna: Well, I'll give you an example. When I went to ... Not from my work, but from my personal life. When I went to my follow-up with my primary care physician, I followed up diligently for something that was no longer a problem so I basically sat down and told her that and she as like, "Okay, well, I guess we're done." And I agreed. She said, "So we have about 15 minutes. Could I ask you some questions?" And we literally reviewed two cases that she had coming up that afternoon of 90 year olds that she didn't know how to address. Not medical stuff, of course, social stuff.

One, she wanted to talk about driving. Another one, she wanted to talk about safety at home. And this is why. She has 30 years of primary care experience on me, but this is the issue most affecting the care and well-being of her ... Well, maybe not most, but my assumption. But clearly affecting the well-being of her patients and she doesn't know how to manage it. So that's why I feel like the little G geriatrics, getting that into primary care, is definitely important, and for us that does include the social stuff for sure.

Eric: It's interesting. We've got palliative care, we have primary, secondary, and tertiary. And geriatrics, we have big G, little G.

Anna: Yeah, it's a little simplified.

Eric: That's great. The big G geriatrics being like the academic geriatrics for the most part.

Alex: I guess big P, little P does not sound ...

Eric: Yeah, it doesn't. No, but here's the other [inaudible 00:17:38] we're talking about. Is it G-WEP or GWEP? Is it palliative or pa(ae)lliative? I think the key there is if you're from the United States, it's palliative. And if you're from Canada, it's pa(ae)lliative.

Alex: Like a pail.

Eric: Like a pail. But I don't think that's a hard and fast rule.

Alex: Yeah, maybe we should change this podcast to GeriPail.

Eric: That's what we should do.

Alex: For all you Canadians out there.

Anna: Welcome to the GeriPail podcast!

Alex: GeriPail podcast.

Eric: Wait, Anna, I have a question for you. You're getting funding to do this through GWEP?

Anna: Yes.

Eric: So what can you say to our listeners out there who are not getting funding to do this through GWEP?

Alex: Aside from get funding.

Eric: Right, aside from get funding. What would you say to those listeners?

Anna: Yeah, and I'd also say that is the generous and wonderful nature of this project is that it has allowed for that because I know, historically, that has not been the case and probably a lot of the reason why some of this work wasn't done before, 'cause it's not like people didn't know it needed to be done or weren't hoping to get it done.

One thing, actually, I'd recommend is all of the GWEPs, most of us have great websites. Okay, we're still working on ours.

Eric: Oh, I like that.

Anna: Thank you.

Alex: Do you know that you don't have to say the www anymore?

Anna: Yeah.

Alex: Yeah, I'm still doing that, but the young kids, they don't do that anymore.

Eric: No, they say “http//….”

Anna: They're more completist.


Anna: Yeah, Who engineered getting ... Anyway, I should look into the history of that. So a lot of us have great materials. Modules, like videos, handouts, ways to educate yourself. I think there's still an element of knowledge transfer that needs to happen. And then the other thing about the GWEPs that's been really interesting is they encourage a, they call rapid cycle quality improvement methodology to that work. In the areas where we are contributing to systems change to help formalize some of the knowledge and improved little G activities, we sort of try to rapidly, both implement a change, study it, and improve it.

There's a lot of materials around how to do a screening in your clinic. How to incorporate a quick fall screen and then incorporate a nurse specialist in geriatrics to manage falls and positive cognitive screens, things like that. Already in our two years, so limited experience, working with three different primary care settings and, within that, very different clinics. Everybody's approach is different.
There's no one solution for a primary care clinic because they're all so different, they all have different patient populations and they all have different workflows. So this is where, potentially, it gets a little dry for people to think about, but that's where the rubber meets the road. How are you gonna screen for cognitive impairment, in who, and how are you gonna track that, and then how are you gonna follow up on that, what does that look like? That's another big part of what we do.
I think a lot of the GWEPs have a lot of those materials online and that's actually the focus of our last year is to develop train-the-trainer materials so that we can expand our reach a little bit and empower organizations and primary care settings to train somebody within and have materials and then to really beef up our website and materials that people can use. So all of this is the federal government funded us to do it so we want people to have it.

Eric: I wanna back up a sec. Did you say we should be screening for cognitive impairment in primary care?

Anna: I did not say that. However, some places wanna do it and I salute them because I think it's a wonderful idea. I will say that that is actually one of our projects is not working with primary care, working with the community. Our Department of Aging and Adult Services and their in-home supportive services division, which is the caregiver division, so you have to have a functional impairment to get a caregiver, is gonna be screening everybody for cognitive impairment.
So one of our parts of our program was to help work with that idea and figure out how you could do that. How you could get that information through their system appropriately and have appropriate quality control and further evaluation as needed within their own organization and then feed that back to primary care, which is their goal. They felt really strongly that they wanted to see this better addressed and I think that's amazing because that's really gonna ... If we can reach those primary care doctors, which is part of our role to help them think through that and hopefully do it well, how are they gonna respond to that information?

Eric: Has that rolled out yet?
Anna: No. It's rolling out the beginning of the next calendar year, but it's pretty amazing, especially considering they have 22,000 clients.

Eric: Wow.

Alex: Aging and Adult Services?

Anna: Yeah, and the in-home supportive services, yeah.

Eric: Has 22,000 clients?

Alex: And all 22,000 will have cognitive screenings?

Anna: That's kind of the ideal, like they have a regular intake. However, obviously, I learned that you're not supposed to screen people who already have something, so things like that we won't need to screen people.

Alex: Right, right. If they already have dementia, then there's no need to screen them.

Anna: Presumably. Although, it's not ... The whole point is probably a lot of those people are undiagnosed.

Alex: That's probably a better target population where screening might make sense rather than a general primary care population because Aging Adult Services sees people who are highly likely to have cognitive impairment. But then the other tricky thing is then is there something you can do about it? What will the primary care doctor, once they know their patient has cognitive impairment, what will they do? How will that influence them? And then can you give them the ... What should they do?

Anna: Well, then the thing I hear from primary care is, "We don't have anywhere to send them. We don't have time to do an evaluation. We can't do anything about cognitive impairment anyway." So it depends on the setting. For some of them, we have developed like, here's how you work out cognitive impairment in our system. So not a theoretical, up to date article, but in here's who you might ... Like, click on this button to order this lab, like a very specific algorithm. Here's who you might refer. And then someone like me is very interested in using that information to advocate for more resources to address cognitive impairment and make a, as comprehensive as we can, care plan. 'Cause I personally don't agree that you can't do anything about it.

Eric: Are there one or two most salient lessons that you've learned over the course of the last two years of bringing little G out there in the community?

Anna: Yes. In our short time, we have had a tremendous experience. First of all, realizing how grateful people are for some knowledge addressing these topics, that they're really under-addressed. And how eager people are to be incredibly competent and good at what they do, so it's really well-received. And we have definitely, almost at every point, identified more need. I think we certainly have that feeling, who knows how far it will go, but of a tip of the iceberg kind of feeling of the need for this kind of knowledge and competency building.

And then the other lesson, clearly for us, has been the joys of partnering with people who are so committed to making sure older people have joy and dignity in their lives no matter where they are, no matter who they are, no matter what resources they have. So working with all of our amazing partners like Little Brothers, Homebridge, DAAS, UC Hastings that help us do medical legal practice work, Alzheimer's Association of course, social work schools, our nursing schools here. So on the academic side, everybody.

From the partnership side, we are just starting to evaluate that and asking people. They say that even in a field that they've worked for a really long time, the fact that we're all partnering together in this effort has opened more doors for them. And I think I'm more and more convinced that there really isn't enough resources to build the big G and that the little G is very much worth our time.

Eric: So what's next for GWEP?

Anna: Well, we have some big hills, not unknown to us here in beautiful San Francisco. But the big hills are, obviously, how sustainable and how real is federal funding gonna be for this sort of thing because-

Anna: Correct. But, yeah, his budget was not friendly to this idea of continuing to fund such programs so we are obviously carefully watching and advocating for ongoing funding for stuff like this. But for us, really, personally, as a program, our next is how far out should we be going. So if you look at other societies, communities that have other values and other organizational structures. Japan, Singapore, even frankly places like Utah where there's this tight social structure. There's a lot more lay people involved in detecting and addressing issues with older people and their idea of what you need to be a competent society to, again, bring joy and dignity to the lives of older people in their every day is bank tellers need to know what's going on because they make mistakes at the bank. Post office guys need to know what's going on because they're the ones who actually see older, isolated people.

There's a lot of amazing lessons to be learned there and I'm certainly passionate about that kind of work and how much I convince people who fund academic geriatricians to be doing that kind of stuff is really fascinating to us. And you guys think about the primary, secondary, tertiary, and I think we think of more of a nesting dolls concept of how many rings out are we gonna go in touching our community, making sure they're competent.

And probably the farthest out we've gone, and in collaborating with Brie Williams and her amazing work, is with our police department here in the city because they respond to a lot of crises with older people and making sure they know that there's certain considerations, like behavioral disturbance and dementia, that aren't criminal activity. Working with them in the context of a crisis intervention course and doing trainings was something that Brie Williams started, who's very involved in criminal justice.

That's as far out as we've gone other than we do do ... I just came from a talk at a community center with older people, just talking with an older woman's health group. So that's, obviously, really important, too, to empower people and their caregivers and family, but we love to think really broadly and build more partnerships.

Thank you guys.

Eric: So how about we end with a little bit more of the song.

Alex and Anna sing “Operator“ by Jim Croce.

produced by: Sean Lang-Brown
by: Author's First and Last Name goes at end of post
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Thursday, July 13, 2017

Dying Behind Bars?

by: Carly Benner Zapata, MD, MPH (@carly_zapata7)

Last week’s issue of the New England Journal of Medicine featured an article authored by a physician at San Quentin Prison, a maximum-security correctional facility just 30 minutes north of San Francisco. In the piece, Dr. Vanjani describes the profound impact of incarceration on the health of prisoners, specifically related to discrimination, loss of social support, and lack of control over basic daily activities. This issue is particularly acute for those who not only live in prison, but who also have serious medical illness and will likely die in prison.

As Dr. Brie Williams and others have described, the prison population is aging quickly and the prison healthcare system (just like the rest of the US healthcare system) is struggling to manage the challenges that come with caring for the elderly1. The challenge is even more daunting in this setting because of the unique structural and social settings of prison. For instance, community-dwelling elders don’t have to worry about climbing onto the top bunk bed without a ladder (or falling down from it), hearing and following orders of a custody officer, or navigating the complex dynamics of the social hierarchy that dominates prison life.

Additionally, prisoners have functional and cognitive impairment at a younger age than their non-incarcerated counterparts, so much so that the research definition of an “older prisoner” is either 50 or 55 years and above, depending on the source2. Not only is caring for aging inmates logistically difficult, it is unbelievably expensive due to the increased healthcare costs for this particular population. Some figures estimate the cost per older prisoner in California at nearly $2 million per year3 (!). By comparison, the costs of caring for an older, seriously ill person in a skilled nursing facility is on the order of $75,000 annually.

There are currently two mechanisms in place to try to ease both the financial and ethical challenges of caring for the aging and seriously ill prison population, though both are far from sufficient in their current implementation. The first is a program known as compassionate release, through which prisoners can be freed before the end of their sentence if they have a terminal illness and are deemed to no longer be a threat to society. Forty-five states have compassionate release programs and no official program statistics are available, but anecdotally a very small minority of applicants are approved and released before they die. The second is the existence of prison hospice facilities, which are available in a minority of states. Prisoners in these facilities receive care similar to that available in other residential or home hospice programs and can also await a decision on their compassionate release applications in this setting. While there are not official numbers on cost savings for prison hospice patients, much of the exorbitant price tag for health care for the elderly and seriously ill is due to contract medical care provided outside the prison walls5, which is presumably no longer needed or wanted once an inmate chooses hospice.

I had the opportunity several months ago to spend time at California’s only prison hospice facility at the California Medical Facility (CMF) state prison in Vacaville, just outside of Sacramento. What struck me the most upon entering CMF was how similar the patients seemed to those I worked with daily at a major academic university hospital and how quickly I forgot that I was in a correctional facility at all. Mr. S was tall and thin in his hospital gown and pajama pants with short salt and pepper hair and big, brown, gentle eyes. His metastatic pancreatic cancer was made apparent to others by his profound jaundice. He broke into a radiant smile of perfect teeth as he introduced me to his wife, grandson and two corgis in the photos he had pinned to the white walls in his dorm style room. He was a veteran and addressed me alternately as ma’am and “doc,” telling me about his symptoms and worries just as any other hospice patient would have. His nurse stepped in to change his fentanyl patch and he smiled and thanked her. One of the pastoral care workers, inmates who are selected to provide assistance and companionship to the hospice patients and sit vigil (A whole other really interesting subject) while they are actively dying, poked his head in to say he’d be back with lunch in a little bit. Mr. S had applied for compassionate release with the hope of seeing his grandson and his dogs before he dies, “and my wife, I guess,” he said winking. Since arriving at CMF, his family has never been able to visit him. They live in Southern California and would have to drive over eight hours each way and between gas and a hotel in Vacaville have not been able to afford the trip.

This story is a common one in California and other states. Palliative care and geriatrics services are not widely available in the U.S. prison system. Only ten states currently offer any prison hospice programs, and most have limited capacities. As is the case for Mr. S, many families are not able to travel from hundreds of miles away to visit their loved ones in their last days of life. When hospice is not available, inmates often die in their cells without adequate treatment of their symptoms. This is not only suboptimal care, but also can be traumatic for other inmates who are present for the death and the time leading up to it. This suffering is largely invisible to free society, as prisoners are deliberately sequestered away from the rest of humanity. This, however, does not mean they are any less human or immune to the challenges that all seriously ill people face. Nor should it preclude prisoners from the basic human dignity of spending their last days of life free of pain and suffering as any of us would want for ourselves or our loved ones regardless of previous actions.

Incarceration is a necessary for some and prisoners will inevitably grow old and sick behind bars. However, it is incumbent upon society to continually evaluate whether our current system of imprisonment is ethically and financially justifiable. The end of life is a time when justice demands we place human dignity first through enhanced hospice resources and compassionate release, not additional taxpayer funded suffering.

  1. Williams BA, Goodwin JS, Baillargeon J, Ahalt C, Walter LC. Addressing the aging crisis in U.S. criminal justice healthcare. J Am Geriatr Soc. 2012 60(6)1150-6.
  2. Loeb SJ, Abudagga A. Health-related research on older inmates: An integrative review. Res Nurs Health 2006;29:556-565.
  3. Williams BA, Sudore RL, Greifinger R, Morrison RS. Balancing punishment and compassion for seriously ill prisoners. Ann Intern Med. 2011 19;155(2):122-6.
  4. Pollock, Jocelyn. Prisons Today and Tomorrow, Second Edition. Burlington: Jones and Bartlett Learning, 2005.
  5. California Department of Corrections and Rehabilitation. Inmates Sentenced Under the Three Strikes Law and a Small Number of Inmates Receiving Specialty Health Care Represent Significant Costs (Report 2009-107.2). Sacramento, CA: Bureau of State Audits, California State Auditor, 2010.

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Tuesday, July 11, 2017

Life After the Diagnosis: A Podcast with Steve Pantilat

On today's podcast, we interview Steve Pantilat about his new book "Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers."  Steve is a Professor of Medicine, the Department of Medicine at UC San Francisco, Kates-Burnard and Hellman Distinguished Professor in Palliative Care, and Founding Director, the UCSF Palliative Care Program.  

In his book, Steve writes to patients and family members coping with serious illnesses about the difficult decisions they face in a convoluted medical system, giving them practical advice on a wide range of common concerns.   We talk with Steve about how he came up with the idea of the book, his views on living well and what a "good death is", the role that hope plays in decision making, and the language that we use in medicine that can easily be misunderstood.

Steve can also be heard during his recent appearance at the Commonwealth Club of California (click here for the link) on on Forum with Michael Krasny on August 2, 10-11am PT.

Enjoy! Transcript is below.

Eric Widera, @ewidera

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 is in the office with us today?

Alex: We have a special guest today, we have doctor Steve Pantilat, who is the head of Paliative Care at UCSF, Professor of Medicine, Endowed Chair, he has a new book out called Life After The Diagnosis. This is a terrific book, Eric and I read it recently, we're excited to talk to him about it. Welcome to The GeriPal Podcast.

Steve: Thanks a lot. Really a pleasure to be here.

Eric: But before we go into the book, we always ask our guests, is there a song that you want Alex to sing?

Steve: "Running on Empty", Jackson Browne.

Alex: Jackson Browne, you're gonna join!

Eric: We are excited about this.

Alex: One more round and here we go.

Alex and Eric: Alex

Alex: Great choice of song! We need a little Jackson Browne, I think that's the first time we've done Jackson Browne.

Eric: I think so too!

Alex: So, Steve, your book, Life After The Diagnosis, published in February, and I heard it was on the anniversary of your father's death?

Steve: That's exactly right, yeah. Twenty-six years to the day, it turned out. Yeah.

Alex: So what prompted you to write a book? That seems like a big undertaking.

Steve: It is a big undertaking. People told me it was a labor of love, which is exactly right. Like you probably do, I get a lot of calls from friends, family, colleagues, you know, "My mom is sick, my grandmother, my aunt, what should I do?"

And these are people who are smart, they have access to Google, they have access to books, and journals, and so on. And yet, I realize they don't know what to do.

And I had the experience of realizing you could be helpful to people even if you're not their doctor, even if you're not taking care of them, and even if you don't know them well. There's a lot that we know in Palliative Care that can be really helpful to people who are sick, things you can't Google your way through.

And I realized that was helpful and I realized ... And then people would ask me, "So, this is great, so helpful, what book should I read that really helps me with this?" And I said, you know, there isn't one. So people said you should buy it - I mean, you should write it.

Alex: You should write it! Yeah.

Steve: So I said alright.

Alex: So what was the process like, writing this book?

Steve: I wrote the outline of it about ten years ago, this idea of like what should be in a book to help guide people with serious illness. But then it sat around for about six years or so and then ... Writing it was really developing an outline. I did a lot of dictation and then transcription and I worked with an editor all the way through, where I would dictate and transcribe and edit and then we did a back and forth on it. And then I developed a proposal, it was about sixty-five pages, three full chapters. Then I had to find an agent, that took about nine months to find an agent. They had great ideas for books they'd like me to write but-

Alex: But not the idea of the book I wanted to write.

Steve: I had to find the right agent. And then the agent said, "Okay, now revise your proposal," so I did that. And then he said, "Okay, I'll get back to you." And that took about six months or so to find a publisher. Once it was a publisher, it was like, "Hurry up and write the book." Then it's like, "In seven months, we want the book done." So then it was really like, writing, writing. Luckily, I had a detailed outline for every chapter, and then it was writing, writing, and then there was a bunch of back and forth after that before it's ready to be published.

Eric: And I remember from your book, there was a part of one of the chapters, you talked about if you had a poor prognosis or a life limiting prognosis, the things that you would and would not do. The thing that stands out for what you wouldn't ever want to do again was floss. So I learned something about you, Steve.

Alex: But I think on the list was write another book! Is that right?

Steve: Yeah, it is, yeah.

Alex: I would imagine going through this process, I would never want to write a book again.

Steve: It's funny, my agent said, "Usually within your book, there's the next book is buried within this book." And so I have some ideas about what I'd like to write about and although it's a difficult process, it's been really rewarding and I thought I'd like to do it. And I would indeed stop flossing. I hate it.

Alex: So one of the themes that you address head on, upfront in the book, is the idea that this is a book that Palliative Care and this book are about living well and not dying well. Can you say more about that?

Steve: Yeah. Which really occurred to me in writing the book but also in caring for patients is that our goal, my goal ... Our goal as a field is really to help people live well. And there's a lot of discussion about a good death and certainly, we want people to be peaceful and comfortable and dignified at the very end of life but that fundamentally, I see our job as to help people live well. And the challenge is, how do we live well?

It's really hard to make these decisions, decisions about chemotherapy, about whether you wanna be in a clinical trial, do you want a LVAD, do you want more procedures, do you want to be in the hospital, do you want a feeding tube, do you want to start dialysis? These are very difficult decisions about how we live well and what's important to us. And that's where we really help people, is to think about how they live their lives well.

Hopefully, that will lead to an end of life experience that is in fact more peaceful and comfortable. But that's not our goal, fundamentally.

Alex: There's a tension, I think, within the field of Palliative Care, and even a larger community that includes folks who are interested in end of life care, who are interested in ... People living with serious illness, around this specific issue, should the focus be on the death aspect, the dying well, the let's celebrate death, let's acknowledge it, let's ...

Eric: Redesign it?

Alex: Redesign it, make it a natural part of our existence. And then there are other folks who say, as you do in the book, you know what? It's natural, it's a normal evolutionary urge to fear death, right?

Steve: That's right, that's right. What I find is the discussion of end of life, to me, is most helpful because it helps us think about how we wanna live our life. So the fact that we are mortal, makes today urgent. And if contemplating the end and how we want to die helps us live today better, I find that to be really helpful and to not be afraid of that and to really face it and recognize our mortality. I find that conversation really helpful.

The fact of how I wanna die, do I wanna be on a beach, and what music do I want? My experience is it doesn't turn out that way. Like it's a lot different than that and it doesn't pan out that way and the focus being on the very end doesn't actually help you decide whether you wanna start dialysis or not. But that's the issue you have to deal with.

I've also been impressed that the people who most want to talk about death are healthy. And the people who are sick, that I take care of, they want to talk about living well. And so, in a book that I wrote for people with serious illness, it's about how do you live well.

And I guess the last thing I'll say is that, we talk about a good death but I don't see death as good. I've seen it only as being sad and filled with grief and loss, and nothing we do seems to make it good. And the tragedy ... I recently took care of a forty-two-year-old woman with an eight-year-old child in the hospital. She died in the hospital. People would say, "Oh, that's a bad death," but you know, what was bad is that she died. And if she had died at home, it wouldn't change the tragedy and the sadness and the grief and loss associated with her death.

She was comfortable, her family was with her. It was sad. And I don't see that being in the ICU would've made it a lot more tragic or that being home would've made it a lot less tragic. It was a really sad, grief filled experience for everyone. It's important to just acknowledge that piece of it.

And I also don't think we're gonna make death good enough that people sign up for it.

Alex: This builds into another major theme that you write about which is the role of hope and that hope changes. If we're not hoping for a good death, what are we hoping for? Could you say more about that?

Steve: Yeah. There's this idea that somehow if we talk about what's really happening, like how serious your prognosis is, or the fact that you have in fact a life limiting illness, that somehow that's gonna take away hope and so, let's not talk about it, we need to leave people with hope.

But I worry that what that leaves people with is false hope. And that fundamentally, false hope is no hope. And if we talk about hope, we can really promote it and we can encourage it and to recognize that people have hope, even when we take care of people who are days away from the end of life, who are actively dying. They still have hope for things that are meaningful to them. And by talking about it, we can really encourage people to have hope, and to build on and to recognize, yeah, there's hope for cure, sure. But there's hope for a lot of other things that can coexist within the hope for cure, or alongside that hope, and we can encourage that.

Eric: One of the stories that stood out to me was also in the false hope section of your book. It was Sergei. It was a eighty-year-old man who fought in Stalingrad, is that right?

Steve: Yeah, that's right, that's right.

Eric: And his wife had dementia and his hope was that she would get better?

Steve: She would get better, yeah. That her thinking would get better, that she would get more functional, and he just never wanna give up.

Eric: What's our role as clinicians? When we're faced with this, do we call it false hope?

Steve: That I would say is false hope, we know that dementia does not reverse. But what really impressed me with Sergei's story is when he explained being at Stalingrad and all these people who died and he ate frozen potato peels and he never gave up and he had hope and that's why he survived. And I realize that there was nothing I could say that would fundamentally change his hope in his wife getting better and I realize my role at that point was just to support him in that hope. And I also realize that his chance at Stalingrad was better than his wife's chance of getting better.

But, you know, there's a time to push and there's a time to accept and support and that was a time to accept and support.

Alex: And I like the statement, "Realistic prognosis focuses hope. They give patients reliable and realistic information they can use to make decisions." That was great. Focuses hope. Realistic prognosis focuses hope. Could you say more about the role of prognosis and prognosis communication?

Steve: Well, I'm talking to two experts on prognosis, I actually talk about the ePrognosis website-

Alex and Eric: We saw that!

Steve: -which I really like.

Alex: Thank you for that.

Eric: Alex came into my room and said, "He wrote about ePrognosis!"

Steve: It's a great website! It's really, really helpful to people and really makes it very practical and usable to think about and talk about prognosis. It's fundamental to what we do is to talk about prognosis, is for people to know what's going to happen in the future and what is realistic in the time that they have left. And it's hard to imagine you could make good decisions without that information about what you wanna do and how you wanna live your life and whether you accept certain therapies or what you choose to do in your life.

Eric: Floss.

Steve: Floss. Exactly! Exactly. It depends entirely on, "how long do I have?" I thought ... When I read the book, When Breath Becomes Air, which I think is really a tremendous book and very moving, very powerful; one thing that really struck me is how Paul Kalanithi speaks to this idea about what he would do based on his prognosis and that to really make a difference in science would require twenty years and he no longer had that. But if he had two years, he'd finish his residency. And if he had a year, there was a book he wanted to write. And how he made those decisions very explicit and then decided to have a child and this idea of this focus on legacy and how the prognosis really impacted the decisions he made and how he spent his time. That's true for all of us, about what it is we wanna do. And if we don't have that information, we're lost.

Eric: But didn't his oncologist refuse to give him a prognosis?

Alex: She did!

Steve: Yeah.

Alex: He said, "What's my prognosis? I wanna know my prognosis." And she said, "Absolutely not."

Steve: I talk about that in my book as well. Paul and Lucy had plenty of access to prognostic information and I'm pretty sure they figured it out. But what I tell ... Doctors say that a lot and I thought that was a very interesting ... Not what I suggest in the book. And I tell patients, look, your doctor will say, "I don't have a crystal ball, who really knows, prediction is hard." Yeah, all true, but you can say, "Give me a range. I mean, are we talking days to weeks, weeks to months, months to years?" Your doctor should be able to give you information like that.

Eric: Yeah, I'm always fascinated, there's so much uncertainty in medicine. Everything that we do, there is uncertainty. From the diagnosis to treatment plans, but nobody says, "Oh, you know, we don't have a crystal ball whether or not this Zosyn's gonna work for your pneumonia."

Steve: Right? Or whether you have pneumonia at all, right? Could be pneumonia or could be something else. Right, we're very uncomfortable and I get it. It's not a fun conversation to give someone a limited prognosis. Like how fun is that? But we're not here to have fun all the time, this is serious business that we're involved in.

Alex: Yeah, yeah. Another major theme that comes out in your book is this balance between quality of life and quantity of life. Could you talk a bit more about that?

Steve: In some ways, this is maybe the most important point is that the focus and the goal is really to have good quality of life and to have the best possible quality of life. And I what I tell people at the bedside is, "My goal is to help you live as well as possible for as long as possible. That's my goal."

People ... You know, their eyes light up. That sounds good to me. But we often give people this false choice, we say, "Do you want quantity of life or quality of life?" And it's somehow, if you want quantity of life, you have to accept all the possible interventions to attack your illness or to treat your illness. Every chemotherapy regimen, every procedure, and so on.

And what we know now is that, in fact, there comes a time when some of those things not only don't help you live longer but may actually ruin your quality of life. Chemotherapy in the last six months of life, for example.

And that somehow if you want quality of life, it means you're not gonna live quite as long. And what we know from Palliative Care, from the research, from the literature in our field, is that you can get both. And Palliative Care helps you live better and at least as long, maybe longer, but certainly no shorter, and you can live well and long. And part of my book, the point is to really get people to engage with and ask for and demand Palliative Care to live well and to live long.

Alex: I think there's a nice story about your grandmother and living long and living well. If you wanna read that for our listeners?

Steve: I'd love to, thanks.

"My Safta used to sign birthday cards with the wish that you should live to a hundred and twenty. Moses lived a hundred and twenty years. A traditional birthday wish is that you should have a long life, like Moses, the greatest teacher and leader of the Jewish people. But as she got older, my grandmother changed it a bit. In Hebrew, she switched just one letter, and the change in meaning was profound. Rather than saying, 'Live to one hundred and twenty,' she wrote, 'Live to one hundred like twenty. Live long and live well.'

My Safta understood that a good life is even more important than a long life. She lived that saying and declined chemotherapy when she was diagnosed with lung cancer at age ninety-three. Not all of us will live that long but we can all live the essence of that saying by living well."

Alex: And I would point out - this is important to know - that the book is filled with poignant stories that illustrate key points from your personal life and from all of the many patients that you've cared for. And that really adds a richness and brings it home in sharp focus for readers out there.

Eric: I think there's a lot of important points for providers who do this too. You know, one section that resonated with me that I didn't even think of for some of those words, is that the phrases that we use as physicians and clinicians, including, as simple as something as being positive, like, "The blood culture was positive." To me, that makes sense! "Oh yeah, the blood culture is positive, we gotta do this workup." But you write it also, in the general public, positive can mean a good thing. Like, "Hey! The blood culture was positive!"

Steve: Right. Yeah. This really struck me, a patient I took care of very early in my career, during the early days of the AIDS epidemic, said, "Why do they say it's HIV positive? It's not positive. It's terrible." I thought, "You're right. You're exactly right." If the lymph nodes are positive, if the margins are positive, it's all bad news. And yet, if you were to listen to it, you would think it was somehow good.

Like progress. Like progressive illness, your illness has progressed. "Oh, that's great!" No, that's terrible. So I now think about this when I talk with my patients and I say, "Your heart failure is worse," rather than saying, your heart failure has progressed, or the cancer has progressed. Your cancer is worse because that's clear.

Eric: It's so hard, I remember one time I was talking to somebody, things were going great, we were gonna move him from the TCU to the ward, The Red General Ward, I said, "So, we're gonna move you today to the floor," and they were shocked!

Like, "You're gonna move him to the floor? What are you doing?"

Steve: Yeah. There are all these words that we use that are really ... this jargon that we use that's really crazy.

Alex: What was the other one? Ambulate?

Steve: Ambulate, right! So we know what that means, right? Ambulate, I mean if you think about it, it is a word that ... It's not quite walk, right? Ambulate just means sort of get across the room somehow and there's many ways to ambulate. You know, get out of bed and move around.

So we understand that but I always wonder what if family would think. You know, "We're gonna ambulate your mom three times today." I just have no idea what they think, is she gonna get an ambulance, is she gonna... like, who knows? And you realize that these shortcuts that we need in medicine to communicate effectively can really get in the way of talking with our patients.

Alex: On a related note, one of the key points you make here is about the use and abuse of the word dignity and how people from all sides of the spectrum, of many issues seem to claim that word for their own. Could you say a little more about the word dignity?

Steve: Dignity is one of those very loaded words that's in fact very personal. What you think of is your personal sense of dignity. And we use dignity, really, as you say, on many sides of the issue. So I think that where I first really noticed it was when people were talking about aiding dying. And people say, "Oh, the proponents of aiding dying say we have to respect the dignity of every individual to make that choice for themselves about the manner and timing of their death." So it's all about dignity.

But people who are against it say, "This violates our sense of human dignity. For people to end their lives, no matter what. And we should take care of them because human beings have this innate sense of dignity that would be violated by ending their life sooner."

And so you see how it goes both ways. And I've heard people in the ICU talking with family, saying, "We really wanna respect your loved one's dignity." Well what they mean is, we wanna withdraw life sustaining intervention because we think that what we're doing now is somehow violating their dignity and the family says, "Well, we want to protect their dignity by keeping them alive." And so we often use this word as a code for certain things. Like, respect your dignity by withdrawing interventions and what we should ... If we're gonna use that word, we really need to embed it in what the patient and family think of as dignity and their interpretation of dignity and try to support that idea, not our own.

Alex: So, Steve, another major point in the book that you emphasize is strong recommendation. That for people who are living with serious illness, that they forgo CPR in the event ... If they have a cardiac arrest and are dead. And in fact, I like these words that you use, "If despite CPR, you die, your final moments will have been spent at the center of a tornado and while a team works on your body, your family will be watching the horror or be banished from the room. In either case, they won't be with you, at your side, holding your hand." And I thought that was a very strong recommendation and an important recommendation that you make here. I wonder if you could say more about that.

Steve: I think there's a way in which people with serious illness think, "Why not? Why not just try it?" And the evidence really suggests that when your illness is very advanced, to the point that you die of it, CPR isn't really gonna help you. It's not gonna help you at all and you're gonna end up sicker. I think there's a way that people think it's like reset the computer. Like, "Eh, it's not working, let me just reset it, now it works better than before." But we all know that even if you survive CPR, you're gonna be worse off than you were and there are implications, maybe not for you, I think this idea that somehow it's suffering for the patient, I think is not right. We do CPR generally on people who have died. And so I don't see that there's a lot of added suffering to the person who's died but there is this impact on their loved ones who might be at the bedside. And we have to remember what their experience is as well.

CPR is ... It can be violent in its way. The chest compressions and the shocks and so on can be very violent and very distressing and it's ... Why would that be the memory that you want to leave behind? And yet, we have to recognize that people may see it in the context of lots of other care and that somehow being DNR and sort of saying, "I don't want CPR," may be saying a lot more than that and we have to be careful to remember that all we're saying is, "When you die, when your heart stops and you stop breathing, we will not try to revive you because it won't work. We'll let you die peacefully." But that has no bearing on all the other care that we will continue to provide. And we have to emphasize what we'll continue in the meantime and all the care we will provide to make sure people are comfortable and well cared for so that we don't see this decision about CPR at the very end as somehow implicating something more than it is.

Eric: That reminds me of another part of your book where you said something very poignant, "Treatments including surgery, chemotherapy, dialysis, LVAD, and others are not imbued with moral character." Can you tell me a little about that, what that means?

Steve: Yeah. There is a way that we talk to each other and talk with our patients about these interventions like dialysis as being good or bad. You know, dialysis would be ... I think dialysis would be really bad for this patient or, dialysis is not indicated, or chemotherapy would be terrible.

Eric: It's terrible, it's evil!

Steve: Right, it would be just a terrible thing to do. And at the end of the day, it's just an intervention. It has no moral quality one way or the other. Dialysis it just is this thing and for some people, it's incredible, it's lifesaving, it allows them to have a full and rich life, and for other people, it's just not helpful at all and it just adds to their suffering. But that's not because there's anything inherent to dialysis, it's just a tool we have to care for patients. And rather than talk about these interventions in terms of moral quality or good and evil, it's more helpful to just talk about, do they help you achieve your goals? What's your goal?

If your goal is to live well and to have a comfortable life, dialysis may help you do that, but there's good evidence that for a group of patients, it won't do that at all, it'll do the exact opposite. And so it's not ... And we sometimes use this language to try and convince people one way or the other, but it's much better to have a conversation that's based on your goals and values and what you hope to achieve and then see how these treatments will help you achieve that goal or not, rather than somehow imbue the treatment itself with some moral character. It's like, "Oh, you'd wanna avoid this evil thing." Dialysis is not evil. It just is.

Eric: Thank you, Steve, for joining us. Again, the book is called, Life After the Diagnosis, and maybe we can end with another verse?

Steve: Thanks a lot, it's been fun.

Alex and Eric: Gotta do what you can just to keep your love alive. Try not to confuse it with what you do to survive. In sixty-nine, I was twenty-one and I called the road my own. I don't know when that road turned, into the road I'm on.

Running on, running on empty. Running on, running blind. Running on, running into the sun but I'm running behind.

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Thursday, June 22, 2017

Making Friends with the Enemies of the People: an Interview with NY Times Reporter Paula Span

This week's GeriPal Podcast features NY Times journalist Paula Span about what we can do as educators, researchers, and as clinicians to collaborate with journalists and the media in general.  Some general timps that we discuss include:
  • It’s ok to pitch a story to journalists (even medical education ones) 
  • Tell them why this topic/story is important (or not)
  • Be available to reporters - they are often on a tight deadline
  • Speak in clear language.  That includes avoiding medical jargon like “comorbidities”
  • Journalists use twitter, so should you
  • Don’t forget, media comes in all shapes and sizes.
During Paula's extensive career as a reporter, she has written for the Washington Post, Philadelphia Inquirer, the Boston Globe, the Wall Street Journal, Newsweek, New York Magazine, Esquire, Parenting, Glamour, Ms and several city magazines. Paula currently writes at The New York Times for The New Old Age, and trains the next generation of journalists at the Columbia University Graduate School of Journalism.

Enjoy! Transcript is below.

Eric Widera, @ewidera

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: Alex, who's our guest today?

Alex: Today we have Paula Span who is a writer at The New York Times for The New Old Age and she also teaches journalism at Columbia.

Welcome to the GeriPal Podcast.

Paula: It is my high honor to be here.

Alex: It's so great to have you here.

Eric: Paula we start off with the guest asking for Alex to sing a particular song. You have a song for Alex?

Paula: I did. It's my old favorite, because I always so happy to hear a song that was not about a blue-eyed blond, that I asked him to sing Van Morrison's "Brown-Eyed Girl."

Alex sings "Brown-Eyed Girl" by Van Morrison.

Paula: He's leaving out the verse about how the brown-eyed girl got to make love in the green grass behind the stadium.

Alex: That will be at the end of the podcast.

Paula: Okay.

Alex: Exactly.

Eric: So Paula, you just gave a talk to us at UCSF on, I love this title, "Working with the enemies of the people".

Paula: I think it's actually even, "Making friends with the enemies of the people".

Eric: Making friends with the enemies of the people. I was fascinated by the talk, and you gave a lot of us some very helpful hints about how we can work with journalists, and the importance of it for our field. I remember you specifically saying, "Cause there will never be enough Pediatricians or Palliative Care doctors to meet the needs."

Paula: Ideally you would be having these conversations, one on one, with your patients face to face and their families, but there will never be enough of you and you know all this stuff that a country with an aging population needs to know. So we're are the translators and the middle people that can help get your research out, your message out, because our readers want to know this stuff too.

Alex: I was wondering if we could actually talk with our listeners on this GeriPal Podcast about a couple of things that we can do as educators, as researchers, as clinicians, in working with media. What do you find helpful when you're talking to us?

Paula: Well, probably the biggest single thing, is just to be available to respond. Reporters are usually not experts in healthcare, they need to talk to people who are, and they are always in a hurry -they're frequently in a hurry.

So, you'll send out a bunch of emails and if you will respond to me, even if you can't talk to me right away and let me know that we'll set up a time to talk, then at least I can relax a little bit and think, whew, there's somebody who will help me with this.

When people don't respond, I don't have time to pursue you, I just move on to the next person, and that opportunity often goes away.

Alex: Is it helpful for us to suggest other names, if we're not ...?

Paula: Yes. You have other responsibilities, clearly, besides talking to reporters, so if you're busy, you're traveling, you're on vacation, or I've happened to ask you something that you're not all that knowledgeable about, to send me on to somebody who is; to give me that person's email or give me that person's cellphone, or even make the introduction via email, is hugely helpful.

It's really helpful to some people, the text of relevant studies, if you had them handy, because often Times reporters are not subscribers and all we can see is the abstract. So if you want us to know what's in the study, we should know that, to have someone send it to you, is really helpful too.

Alex: One of the other things that you emphasized is speaking in clear language, not using medical jargon. It's so ingrained in us to speak in this language, it's so hard to break out from it.

Is there a way that you can emphasize that point to our listeners?

Paula: Partly that's my job, is to be the translator. My personal trigger word is comorbidities and I will stop an interview right in the middle, or even in the middle of a sentence and say, "Wait, no one is going to understand what that means."

Why would you not think about it. You talk like this all the time. You have your own language but I would just say, "Could you rephrase that? Could we just say people with multiple health problems?"

Alex: So you're saying multi morbidity is not a better word.

Paula: Not better. Morbidity it's not a word in common parlance. Sickness is, disease, any of those things.

Alex: What's the word for pamphlet?

Paula: It was called a "Deprescribing Patient Empowerment Intervention."

Alex: But they meant pamphlet.

Paula: Well possibly they meant brochure, but what they meant was some printed thing. It was one of my personal favorites. Or even things like, food insecurity, as opposed to hunger, which I grant you are not precisely the same thing but it's close enough.

Because if readers get confused by the language you're using, it's not just that they're confused, they'll just stop. They'll just stop reading or listening, this is not for me, and they'll click off. All the work you did to educate the reporter and all the work that the reporter did to try to be ... It just goes away.

Alex: Right. Can we talk about, in academics, a lot of us are used to publishing papers, and we get the proofs, and we read through them, and we make corrections, and then we send it back to the editors, but there's a different sort of process with an article in New York Times or any sort of reporter. You don't, for example, share the exact content of what you did publish.

Paula: Right. I do what you do with an editor. We'll send it back and forth and work on the wording and stuff, but what I can't do, and people in medicine ask me to do because it seems like a normal thing to them is, "Yeah, I'd be happy to see the article before it's published." What they mean is, "I'll try to help you make it accurate".

They're not trying to control me, or censor me, but I can't do it. Ethically, when I think something's ready for publication, it goes from me to my editor and not to anybody else. Because if I make this exception for a Geriatrician, or a Palliative Care Specialist, I have to do it for anybody that asks.

Any politician, anybody who's going to call a lawyer, anybody who's going to tweet nasty things about me. We just don't invite negotiation. I will review things with you for accuracy, I won't let you rewrite yourself, and I won't let you control what I write. It's part of the independence of the press, you have to guard this.

Alex: You're looking for both accuracy as a journalist, but also our judgment on "Why is this important?" Is that right?

Paula: Why is this important? Or do you think I'm actually ... I've had people say, "I don't think you should be following the line that you're following. You're not understanding what the issue is." Or, "You're going off on a tangent." Or, "You're giving undue attention to something that's really trivial and off-topic."

Not only do I want to get the numbers right and get your quotes right, but I want to understand the issue, and I'm not an expert, and you are. So if you think I'm barking up the wrong tree, I would appreciate your telling me why. Maybe I'll make a change, or maybe my editor will, or maybe we'll proceed anyway, but I'll be better informed. I do, I want your perspective and not just the facts ma'am.

Alex: Now how can people get in touch with you if they have important articles that they want to share, that they think might be news worthy?

Eric: Or journalists in general?

Alex: Journalists in general?

Paula: Our email are usually, or Twitter handles, or Facebook links are usually on the article, or not to find out. Anybody can google me and find three different working emails for me. I have a website because I have a book that I promoted. Journalists are not hard to get to. There's no reason not to get in touch with them. The worst their going to say is, "I don't think so, but thanks." Or "Stay in touch, maybe they'll be another idea." We're always looking for ideas.

Eric: Are journalists on social media like Twitter?

Paula: Yeah. I think, virtually, the entire staff of The New York Times is on Twitter, Facebook a little less. I don't do Instagram personally because I'm not a visual person but yeah ...

Eric: But you've had leads for articles from Twitter?

Paula: Oh yeah. I've had leads from the GeriPal blog.

Alex: I've heard about that before!

Paula: From other people from your shop Tweeting. I use Facebook as a way to find subjects, human subjects, that put a human face on an issue. So I'll post, "Anybody knows somebody who's being treated with this drug?" Or, "Have you had this illness, and what was your experience? I'm trying to find people to talk to me."

Yeah, we're all over it.

Eric: Why are journalists on Twitter? It seems like most of them are, is there a reason behind that?

Paula: Because it's what we do. You traffic in information. Journalists are terrible gossips. Any newsroom is just full of gossip because that's why you do, you don't turn it off when it's not about the President. Share what you know, and people have opinions, people want other people to see their story, so I always post my column and other people post their work. We read each other, it's just part of the sea that you swim in.

Alex: You said something about journalists; that you're always on a deadline, it's always ... short piece of information. Twitter is conducive to that. You just get the little headline. The concise punchline. You don't have to wade through something.

Paula: I was actually a little disappointed when they started allowing photographs. I just want the facts. Now, of course, I'm used to it, and I like them. It becomes an issue somewhat because we're supposed to be skeptical but also non-partisan. Devoted to truth but not promoting a particular candidate or point of view. You have to careful of your Twitter presence or your social media presence, not to look like you're in some camp or other.

Eric: How do you decide what's news worthy? You must get pitched all the time, what are the key elements?

Paula: I say it's like pornography, it's very hard to define but you'll know it when you see it. It's a sense that there may not be a whole new subject but there was some new thing to say about it. Some study that confirms what people have always thought, or some study that shows that it's not what people thought, or a growing number of people with x problem, or some new program that addresses a long standing problem.

There will always be some service articles that are just about, "How do you choose a nursing home? When do you need a Geriatrician? What's a Geriatric Care Manager?" There will always be some of those because there's a new cohort every few years that needs that information. Aside from that, your editor will have this attitude whether they say or not, like why are you telling me this now? You have to have a reason of "Why now?"

Alex: The other thing you talked about, when you were with us for Grand Rounds is - media comes in all shapes and sizes.

Paula: Right.

Alex: Can you tell us a little bit about that? What you meant?

Paula: It used to be so much easier, and I know that people are returning my calls and responding to my emails, and thank you, if that was you, not of my winning personality but because of those three words; New and York and Times, but now the media universe is vastly broader and people are doing good health and science reporting in a number of places that did not exist ten years ago. Places with names like Buzzfeed, or Vox, or The Daily Beast. STAT News is only two years old. ProPublica. Some of these are non profit so that's a new model.

So, just because someone is calling you and they are not from The LA Times, or The Boston Globe, doesn't mean that they don't have an audience, that they are don't have an expertise, and that's not a good place for you to give an interview or to share your research.

One of your colleagues told me today that she got a call from a reporter for Nautilus and she didn't know what it is, but I know what it is. It's a well regarded science magazine, and she was right to have the interview with Nautilus, even though there was no Nautilus ten years ago. Now there is.

Alex: I wanted to ask you about The New Old Age, if we could, which is a terrific, the best aging and care giving column in the US, and it's consistently been so. So I know it's evolved over time from being a blog to a twice monthly column.

Paula: Right.

Alex: I wanted ask you, what stories in The New Old Age you are most proud of?

Paula: Well, I don't know if this might not have been the one that got the most circulation but we did a couple of columns about these agist prejudice that exists within long term care facilities. There was a very upscale, continuing care retirement community in Norfolk, VA. As usual, it was a sort of tiered service, so there was an independent living, an assisted living, and a nursing home section. They had a beautiful waterfront view dining room, and at one point they decided that only independent living people could use it, and the assisted living and the nursing home residents had to use their own dining rooms, which caused this huge uproar about how unfair it was.

People had paid boatloads of money to be in this facility and their children got a lawyer, they were very angry, they got in touch with me and also the local paper in Norfolk. Did several stories on this. Eventually, management backed down, but meanwhile, the Department of Justice decided that this was a violation of the Fair Housing Act, and they leveed ... they had a big fine, but a fine on the ownership. They also went after another place that I wrote about. We felt like we did good there.

Alex: Right. You helped people. What is coming out? Or do you want to give our readers some sense of ideas that are peculating, that they might expect to see in the next few months.

Paula: I think not too much, cause then someone will scoop me. So I think I'll just keep that to myself if you don't mind.

I have this long lead time. I can only publish twice a month, so someone else can come and write about it in The Washington Post or The Wall Street Journal next week, and then it'll look like I'm a follower instead of a leader.

So, I think I won't.

Alex: Yeah, the news cycles fast.

Eric: How do you come up with all these stories?

Paula: I thought initially, I can do this for maybe three years and then I'm gonna run out of material; not true. I read many of the journals. I read JAGS, I read New England Journal, I read JAMA and JAMA Internal Medicine, and various public relations people at various places are always pitching me ideas. Many of which are unsuitable but some of which work and then researchers themselves get to know me and tell me what they're working on, and also nobody with an elderly parent is safe within 50 yards of me. Any story you tell me, I'm likely to say, "Hey, can I talk to your mother about that?"

So it comes from a variety of places, but it is not running out. Since I've here, the list has gotten much longer.

Eric: So if we pitch a story, is that bothersome for a reporter? Or are they looking for that? Or is it a mixture depending?

Paula: Right. Don't pitch me about the appointment of your new staff person; because I don't care about that. Don't tell me that this is a good story because next week is National Alzheimer's Week; because I don't care about formal weeks, months, or years. Don't pitch me stuff about Pediatrics please. Know what I do.

Aside from that, I think ... I'm happy to hear from people who have ideas because there's a constant need for material. If it's something smart and interesting, if I've done something on it, I can't do it again for a while, but I'm not mad to hear from people who have good ideas about Geriatrics and Palliative Care. I can't always oblige, I only have 25 columns a year now. It was easier when we posted twice a week, or three times a week on the blog.

But no, I'm happy to hear from people. I don't think ... You hear a certain amount of grousing about getting pitches from flacks. Flacks being the unflattering word for public relations people. It's usually because they're so off base. Don't send me stuff about fashion. Have you ever looked at anything I've done? If it's something about what I actually do, I'm pleased to have that connection.

Alex: Right.

Alex: Where do you see journalism evolving?

I mean, The New York Times went through this evolution. They were describing yesterday where had 60 blogs at one point.

Paula: We had 60 blogs at one point because it seemed that blogs were going to be the savior of print media. Then that turned out not to be true. Now we're doing a lot virtual reality, a lot of video, a lot of specialized digital sections. If I knew that, I could be a rich person. All that we know is that people are trying everything all over.

Alex: A lot of innovation.

Paula: Just a lot of innovation. Some of them are gonna fly and some of them are gonna die. Who would've thought that Jeff Bezot would help resuscitate the Washington Post and yet it's going, great guns. Yet other places that are 100 years old, and just look anemic.

I teach grad students and Entrepreneurial was not a word we ever used to use for journalists. That was someone else's problem. You write the stories, someone else will figure out how to market them, how to publish them, how to distribute them, now that could be part of your role too.

So it's really uncertain. It's kind of scary, and kind of exciting, and I don't know if that's a poached curse which probably is not really a curse, "May you live in interesting times." These are interesting times if you're a reporter.

Eric: Is it a depressing time? Exciting time? To be a reporter? What's the ... ?

Paula: Both, because people are getting laid off in droves. There are many fewer newspaper reporters than there were 20 years ago. If you're an older person like me, I'm trying not to be coy about my age, so I'll be 68 this summer. To be 68 and be a working journalist, I am so lucky. I just feel lucky every day.

On the other hand, my students are going out and they're doing really extraordinary stuff and I'm so proud of them. They're negotiating all this. It's normal to them.

They don't remember some bygone day when you signed on to be a reporter at a paper and you were there for 30 years. Who does that? So they're just everywhere, trying everything, and that's kind of cool to see.

Eric: You have a fair amount of people who listen to us, who are also medical educators, they do research but it's not the typical research in journals. But they're doing really innovative stuff as far as, trying to change how med students talk about end of life issues, or palliative care issues, or developing new geriatric curriculum.

Is there an intersection between that and journalists?

Paula: There could be, if what you eventually you come up with is something that consumers will need to know and use. If you're mostly working within the profession, it's a little too inside baseball and I'm going hae trouble getting ordinary people who are not medical students, or medical educators to pay attention.

But if it's going to end up helping people with their Advanced Care Planning, or it's going to end up with some kind of checklist that people could use, something that the public could use, as well as medical people could use, then maybe.

These things about what's a story, what's not a story, are highly subjective. What interests one person, might not interest another. It's not like there's some kind of algorithm that I could suggest, "Yes, that is something the New York Times would like. No, that is not." It's how it hits a certain person on a certain day.'

Eric: Well, I feel like most of the stuff that I read, and that really impacts me is not about a population but, you write about a single person.

Paula: I try to do that whenever I can, it's the bait. How do you get somebody to read a story about a disease they don't have, a condition they'd never thought of, a trend that they may or may not be part of, how do you lure them in? One time honored way that reporters do this is to put a human face on an issue or a trend.

So if I'm writing about the enormous increase in the number of older adults who are living together without being married, in couples. The data is really interesting but I have to find that couple. I used Facebook to find this couple in Philadelphia that they take care of each other's health, they are each other's health care proxy, they share the cost of their two homes, they go to concerts and theater, and they're not married. I needed those people.

Eric: So Alex, how about you end this with a song?

Alex: You want to join me in the chorus?

Eric: I'll do a little bit of it.

Alex: Oh yeah! This is the verse that Paula requested

Alex and Eric sing "Brown-Eyed Girl" by Van Morrison.

transcript edited by: Sean Lang-Brown

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Saturday, June 17, 2017

How to Recommend to Stop Cancer Screening: An Interview with Nancy Shoenborn

What should you say to your older patient when it's time to stop cancer screening?

This week's GeriPal Podcast features Nancy Shoenborn, Assistant Professor of Medicine at Johns Hopkins.  Dr. Shoenborn published a paper in JAMA Internal Medicine this week on older adults perspectives on cancer screening cessation, and using life expectancy to justify stopping screening.

The graphic above gives some nice quotes of older adults in reaction to the Choosing Wisely Statement, "Don't Recommend Cancer Screening if Patient is Not Likely to Live 10 Years."  38/40 pariticipants in this study objected to this statement!

The majority of our discussion was focused on this puzzling set of facts:
  • Older adults in this study were OK with clinicians advising them to stop cancer screening
  • But most did NOT want clinicians to use Life Expectancy as a justification for stopping

Makes you think, huh?  The major reason for stopping screening is because it's unlikely to benefit more than harm over the course of the patient's life time.  But they don't want to hear it that way.

The most acceptable phrase to participants was, "This test will not help you live longer."

This makes intuitive sense, and is more of a positive framing about possibility of life extension than a statement about prognosis.

Enjoy!  Transcript is below.

-Alex Smith, @AlexSmithMD


-Shoenborn and colleagues: Older Adults Views and Preferences about Cancer Screening Cessation
-Choosing Wisely Cancer Screening and Life Expectancy

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 is our guest today?

 Transcript of the podcast:

Alex: Today we have Nancy Schoenborn, who is an assistant professor of medicine at Johns Hopkins. Welcome to the GeriPal Podcast.

Nancy: Thank you so much for having me, it's a pleasure to be here.

Alex: Today we're gonna talk to you about an article that you published in JAMA Internal Medicine on older adults' views and communication preferences about cancer screening cessation. But before we do that we usually ask our guest to give us a song request. Do you have an artist or a song request Nancy?

Nancy: Anything Beatles.

Alex: Anything Beatles. We love the Beatles, we get a lot of Beatles requests, but we haven't done this one yet. This is Obladi-Oblada.

Alex sings “Ob-La-Di, Ob-La-Da” by The Beatles.

Eric: Nice.

Alex: Brah.

Eric: Brah? What does brah... brother?

Alex: Brah?

Eric: So Nancy, you just had a publication in JAMA Internal Medicine and, Alex already mentioned it, it's older adult's views and communication preferences about cancer screening cessation. Before we talk about that article I was hoping just, how did you get interested in the subject?

Nancy: I have been interested in thinking about how to talk to older adults around the topic of life expectancy and how to incorporate that into decision making, and one of the very commonly relevant decision making areas is about cancer screening. So, that's been the topic I've been thinking a lot about. We had a study about a year ago, also published in JEMA Internal Medicine, looking at providers' perspective on this topic and so, this was a fun project where we got to ask how older adults think about it.

Alex: Interesting, can you tell us a little bit more about what the providers' perspective was? Just to sort of, by way of setting up this current piece asking patients.

Nancy: Yeah, so we did an interview study of 28 premier care providers and asked them how they thought about life expectancy and how they thought about stopping cancer screening in older adults. And what they said was that they think about the older adults' life expectancy quite common, but they were somewhat uncomfortable recommending that they stop cancer screening, even if they have a limited life expectancy. Often if the patient were relatively younger, the patient demanded continued screening they often gave in. That was one of the findings and they secondly they rarely verbalized their consideration about life expectancy to the patients. It was something they consider but didn't really discuss explicitly with the patient.

Alex: That's terrific so, help us set up the need for the current study. Why do we need to turn from the doctors' perspectives to the older adults?

Nancy: It was actually a direct link. So one of the reasons the clinicians mentioned that they thought stopping screening was reasonable but, they didn't actually put it into action because the patients wanted to continue screening and they were worried that the patients might react negatively if they recommended that they stop. So, we got that result and thought, "Well why not go to the patients and ask them what they think about these recommendations on using life expectancy to inform screening decisions." So that's the background of how I got interested in this project.

Alex: So tell us a little bit about what you did.

Nancy: So we interviewed 40 older adults living in the community. We recruited from four different clinical programs. Some were house-call programs where they were home bound. Some were patients where they were dual eligible older adults, and we really wanted to get a wide range of patients with a wide range of life expectancy. So some were ambulatory clinic patients where they were relatively younger and healthier, but we also tried really hard to get the older, the more functionally impaired participants as well, to get their views.

Alex: So, you had a diverse group of older adults. Diverse in terms of life expectancy, in terms of background. Tell us what you asked them.

Nancy: We asked them about two different areas. First we asked them how they thought about the decision to stop screening. So, would the ever consider that, and how they would react if their clinician recommended that to them. And secondly we asked about communication. So, what are some of the preferred ways for a clinician to recommend to patients to stop screening?

Alex: And what did you find in terms of the first issue? Is it all right for these folks if their docs recommend stopping screening?

Nancy: The short answer is yes. We found that many of our participants were very open to the idea of stopping screening. Some of them have already decided to stop and, the rest are very open and came up with scenarios in which they would consider stopping, and more importantly they were very positive towards such a recommendation. Especially if there was a trusting relationship. So they did not think negatively of their doctor or trust them any less if the doctor recommended to them that they stop screening. Even among the ones who would continue to screen, they did not think any less of the doctor for recommending that they stop.

Alex: That is interesting, especially since the doctors, as you said before, were reluctant to bring up stopping screening with their patients in part because they were worried it would jeopardize their relationship with their patients, is that right?

Nancy: That's right. So I find that this result is really reassuring, is my hope, to the clinicians that, look if you have a good relationship where the patient already trusts you, having this recommendation come up really would not jeopardize that, according to what we found in this study.

Eric: And how do they feel about the concept of life expectancy?

Nancy: That was a little bit more tricky. So we found that the older adults thought using age, and using their health status and functional status to help make decisions about cancer screening was a great idea. They did not really make the connection that all those things were directly linked to life expectancy. So, when we showed them a recommendation using the specific term of life expectancy, they were, I would say more perplexed on where that came from, and didn't really perceive a connection between life expectancy and cancer screening.

Eric: And you specifically used the choosing wisely statement, right? "Don't recommend cancer screening if a patient is not likely to live ten years." All but two did not like that statement, is that right?

Nancy: They did not like that statement, for a number of reasons. And I think it's a very complex concept for them to understand. Some thought the idea of ten years is a very long time frame, so how can you predict that? Some thought it was a very definitive and didn't really give any room to consider uncertainty. Some were really questioning this idea why you wouldn't benefit right away from screening, and that it's a delayed benefit, that was very confusing for them. Some thought the framing of that phrase was very negative, and so… but yes, you're right. Throughout they didn't really like that language.

Eric: And, correct me if I'm wrong, at the very beginning of the study, you actually told them that cancer screening takes ten years to benefit, in most cases, is that right?

Nancy: We gave them overview of why we do screening. We specifically say it takes up to ten years to benefit. So, if someone passes away before then, that person doesn't get the benefit but could still be harmed. We say those specific words. But I think that shows us these are unfamiliar concepts to the public, and so even with a brief explanation, a lot of them still didn't seem to wrap their heads around it towards the end of the interview.

Alex: So the unfamiliar concept is the lag time to benefit concept, or the life expectancy concept, what is unfamiliar?

Nancy: I would say both are unfamiliar to them. That age and health status and functional status are actually direct inputs we use to predict life expectancy, and the older adults thought each of them were very important cancer screening. But they did not make the connection that those are directly linked to how we estimate life expectancy, and they therefor did not think life expectancy itself was related to cancer screening.

Eric: So how do patients want us to talk to them about cessation of cancer screening?

Nancy: They seem to respond the most positively to mentions around their health status. So one of the scripts that we tested was something like, "Miss Jones, after what I know of you, I think given these medical conditions that you have, based on what we know of people similar to you and have these health conditions, and how they function from day to day like you, the harms of screening really outweighs the benefits and my recommendation is that you don't get another screening test now. How does that sound to you?" And so that script was the most often positively received, because they perceive that it was very personalized to their individual health conditions, but didn't really alarm them with specific mentions of life expectancy.

Eric: Do they not want us to talk about life expectancy at all?

Nancy: We asked that specifically in the interview, and I would say with a very split answer about, you know it's always hard to give quantitative estimates in such a small sample, but there was a significant portion that did want to discuss life expectancy explicitly. So we said, "You know, it's not the only thing that doctors think about, but knowing that it's one of the factors your doctor considered in making a recommendation about cancer screening, do you think the doctor should then talk about life expectancy.", and some people said yes, because they think it's important to have an honest and open conversation. Other people said no because they, either didn't believe it could be predicted, or that it was too depressing to talk about.

Alex: Your study also examines some specific ways of phrasing the life expectancy question. One way is, "This test would not help you live longer." An alternative is, "You may not live long enough to benefit from this test." Can you tell us about their responses to those different phrasings.

Nancy: That's very interesting that the first phrase, "This test won't help you live longer," was viewed much more positively across the board than the second phrase. That was interesting to me to realize the same information can be framed in such different ways and lead to such different receptence from the older adults, and so they liked the first one much better.

Alex: So I remember I had an experience in residency, where I had a primary care patient, and I said, "Congratulations, you don't need mammography anymore." And she said, "Why not?"

Eric: Balloons started coming down from the ceiling. Wooo!

Alex: No, the temperature in the room dropped, no balloons. I didn't know why she was dismayed, she said, "Why, doctor?" I said, "Well, because you're not gonna live long enough to benefit." That didn't work at all.

Eric: Smooth.

Alex: That was terrible. So yeah, personally this rings true to me. "You may not live long enough to benefit from this test." is just a rather abrupt way to bring up the concept of life expectancy in the concept of cancer screening, where you're sort of not forewarned that that's... people aren't thinking about life expectancy when they're thinking about mammography. They're think about, "Cancer bad. Test for it, take it out." So it's kind of abrupt to suddenly introduce the concept of life expectancy in those terms. However, it's interesting that they were receptive to the idea of, "This test would not help you to live longer," which is more about the ability of the test to help them, rather than whether they would benefit from the test in a given life expectancy.

Eric: Feels like a more positive frame.

Alex: It does, yeah.

Eric: Live longer.

Alex: Right, it sort of aligns more with the goals of most people who have been screened for cancer.

Eric: Now Nancy, you've talked to providers, you've talked to patients, and it feels like, honestly in my practice, I deal with very sick people, we just don't even bring it up. I never talk to people about my recommendation for cancer screening because, it's not even in the realm of issues that is important at that time. Do people want these decisions to be brought up or, is it, like somebody who is dying in the ICU and you don't think dialysis is going to help at all to don't even ask, because if we ask, then they think, "Oh, maybe it will be helpful, because they're even mentioning it."

Nancy: That's really interesting. I would say from both the providers' perspective we have that mention. Some providers approach this by omitting it from the discussion, so they don't bring it up anymore unless the patients ask. From the patients' perspective there was also a subset who preferred a shorter explanation where they just want to hear the recommendation. They didn't need an explanation and then, at least one or two participants said, "Just don't bring it up." So that certainly did come up from both groups. I think the challenge is, so much emphasis on screening and primary care is part of a lot of quality indicators. A lot of the EMRs have this come up and prompt providers. So, for the people who do want to have a discussion we still want to help understand what are the best ways for clinicians to talk about this with them.

Eric: So tell me, how has your practice changed after doing both of these studies? How do you deal with this?

Nancy: That's a great question. I think I always come up and say something that, like we tested in the script during the interview I tell them my recommendation, I tell them that it takes ten years to benefit, and I kind of leave it there. I don't necessarily say that they won't live ten years, so I say, "It takes a long time, up to ten years to benefit and, at this point I think there's a lot of harms that can come up that outweighs the benefits, and I think we should focus on their other, more active issues.” Then, I always check in and see how they feel about that. I would say most of the time they're really happy with not needing to get more testing, but I would also say, in all honesty they are a subset who have strong feelings and they still want to continue screening, and so sometimes I say, "Let's talk about this on another occasion." and so it still really depends. I wouldn't say this is a perfect application to all patients, and they all 100% agree to stop screening either.

Alex: Brings up an interesting point. To what degree would you say this cancer screening decision in older adults is a preference-sensitive decision? Now we've certainly talked about how life expectancy is an important component of whether or not patients will receive a net benefit over the harms and risks of cancer screening. But tell us about, should this be something that patients have a strong role in deciding, and what are the boundaries around that?

Nancy: That's a great question, and I think here I'm kind of weighting into opinions rather than what the paper necessarily showed, and I think this may cause controversy depending on who you ask. On the one hand I can see that, with all of these estimates of benefits, harms, life expectancy, they're all done in a large population, and any time we're applying a population level data to an individual patient, there's always some degree of uncertainty, and so with that it's hard to be super definitive, unless it's extreme cases, to say, "Well I know for sure you, miss Jones, will not benefit from this test, ever."

And so in light of that uncertainty I think it's always good to assess the patient's preference and see how they decide about the decision. That being said, I also don't think it should be totally left up to the patient. I think they actually seek guidance from the clinician so, what I've done, and again, that's my opinion, is to give a recommendation based on the evidence but still make a shared decision, eliciting patient preferences.

Alex: It's an interesting situation here, that you raise in your discussion that, the decision to stop cancer screening may well be based on a short life expectancy for the patient in front of you, as best the clinician can estimate, and yet the patients that you interviewed for this study, these 40 folks, are generally saying they don't want to hear that important piece of background information that goes into the decision to stop cancer screening. Is that a fair assessment?

Nancy: That is a fair assessment, and I think that my motivation for this study and for future studies is, how then is the clinician supposed to deal with this apparent dilemma 'cause I think they can sometimes feel caught in the middle, between the language and the guidelines, and what the patient preference may be.

Alex: Yeah, it also raises an important ethical issue that often comes up about how much do we respect the preferences, wishes, desires of patients, the public, people. If you ask people, "Do you want to know, and be involved in, choice of antibiotics?" They will say, "Absolutely, I want to know everything about all of the antibiotic choices, including risks, harm, benefits, side effects." But we don't do that, as a society. We made a choice that that is not the ethical norm. Although that is the preferences of most people, we don't go into that level of detail. So patient preferences are important to consider but, I think, as you know here, they are not the end all be all. There are other factors to consider.

Nancy: I definitely agree with that. I think it's one of the factors, and I think my job, when I feel there is an appropriate answer, whether it's to screen, or to stop screening I try to say that clearly, and say, "My recommendations for such and my reasons are such." However, there's also a practical aspect of have patients say, "If you're not gonna order this PSA then, we're gonna go to our urologist to order it." Next couple days… the persistent ones may find someone to order it, even if it's not me, and so it's also a balance of my relationship with them and having the opportunity to continue that counseling conversation, versus just a, "Fine, go see your urologist."

So it is a tough thing, in each individual case, but I think the positive thing and, I hope, reassuring thing, for clinicians to take from this result is that the trust between the patient and the clinician really means a lot. One of the quotes that really stood out to me, that we included in the paper, was about a female patient. She was one that, had I would say relatively low health literacy, and the quote, it was something about that she started out demanding mammography after her clinician told her she didn't need one anymore, and she said, "Why not, I'm still human, why not another mammography, why does it matter how old I am?" And the doctor gave an explanation that, to me was not particularly comprehensive. Basically, he said something like, "Miss so and so, you're gonna be fine. You don't need another one." And then she said, "Okay, I accepted that."

Even though she started out so adamant, she changed her mind because she trusted this doctor, and he was a good doctor to her, and so that showed me the power of the relationship between the doctor and the patient, and I hope that the clinicians can take away from this study that that's their strong suit, and from that they can really achieve a lot, and hope to alter some of the preferences that may be inappropriate, and can accomplish that was my hope.

Eric: Great. Well, congratulations again on the paper, Nancy. We will have a link to it on the GeriPal website along with the transcript of this interview. Alex, do you want to give us a little bit of a, couple chords?

Alex: Thanks again, Nancy.

Alex sings “Ob-La-Di, Ob-La-Da” by The Beatles.

transcript edited by: Sean Lang-Brown
by: Alex Smith
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