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.

References:
  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


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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 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

Read more »

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



Links:

-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
Read more »

Friday, June 9, 2017

GeriPal Podcast: Vanessa Grubbs on Hundreds of Interlaced Fingers



Today's GeriPal Podcast features Vanessa Grubbs, a nephrologist and Associate Professor of Medicine at UCSF.  She has blogged before for GeriPal (here and here).

Vanessa talks with us about her forthcoming book titled, "Hundreds of Interlaced Fingers," to be released June 13, but available for pre-order now.

Dr. Grubbs' book tells the story of her journey from primary care to nephrology to palliative care, of falling in love with a man to donating a kidney to him to marriage, and of the journeys of the diverse, older, complex patients she's cared for with chronic kidney disease, who sometimes choose not to start dialysis.

She is one of the few, "palliative care" oriented nephrologists in the US.  We need more!

The transcript is below, though you'll miss Vanessa singing Prince if you only read!



Links:

Listen to GeriPal Podcasts on:

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Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: Alex, who's in the office with us today?

Alex: We have Vanessa Grubbs, who is Associate Professor of Medicine at the University of California, San Francisco. She is a nephrologist and she has a new book out that we're going to talk about today, Hundreds of Interlaced Fingers. Welcome to the GeriPal podcast, Vanessa!

Vanessa: Thank you so much, thank you for having me.

Eric: We all start off with the song. Do you have a song that Alex could sing?

Vanessa: Yeah. When he asked me this a few days ago I thought, "Well, I don't know if my favorite song of all time is appropriate for what you all are trying to do," but he said, "No, let's go for it." My favorite song of all time is “Adore” by Prince.

Eric: All right, you're going to join in!

Vanessa: Yeah, I'm going to try.

Eric: I need your help with this.

Vanessa: Let's get the falsetto.

Alex and Vanessa sing “Adore” by Prince.

Alex: Good enough for the podcast. Good enough for the podcast!

Eric: We got a band here!

Vanessa: Yes.

Alex: That was good, that was fun, that was good. All right, so you have this book, Hundreds of Interlaced Fingers. I love this cover.

Vanessa: Yeah, very exciting. Thank you. I didn't get to pick it, but yeah, thank you.

Alex: Tell us how did you decide to write a book? What happened here?

Vanessa: I think I started dreaming about the book in 2012, just having the thought, "Hmm, maybe I can write a book." Really it's all very unplanned. The book is really a narrative non-fiction and starting with the fact that when I was a primary care doctor I met my husband who had been on dialysis for about five years at that time. I went with him to a kidney transplant evaluation appointment and was just really surprised and taken aback at how the system was set up and the fact that I really knew nothing about it as a primary care doctor.

It was that particular experience that, one, made me want to write about it, but also put me into action mode. For him, I decided to give him one of my kidneys, and for everyone else I really wanted to transition my career a bit and do research in access to kidney transplant.

Once I went out to talk to local nephrologists, really I was just looking for a project, and he says, "You know, you should be a nephrologist for just one tough clinical year. You know, it will change your perspective and it will change how your work is perceived." I said okay and I applied for the fellowship program and they accepted me.

I was different in that I wasn't really thinking about going into nephrology at all. I was really pretty stunned and amazed at the kinds of things that happen within nephrology. I completely agree with that advice to go into the field, because it did completely change my perspective and it totally changes how I approach my research, but it also further inspired me to write. A lot of the stories that I write in the book are about patients, families and colleagues that I've encountered over the past decade.

A lot of the things are just in a way kind of disturbing to me and wanted to write about things to not only just get them out for my own benefit, but really to try to reach as wide an audience as possible, so that people can be aware of these issues and hopefully at least think about thinking about things differently, maybe doing things differently. Really kind of the ultimate message is that we don't always have to do the same thing all the time.

Eric: You don't hold back in this book either. You talk about your experiences both for good and bad, both personal and professionally.

Vanessa: Yeah.

Eric: How did you think about that? How much should you display or put out in the open?

Vanessa: Yeah, there's a lot of personal business in there. It is part memoir, and my kind of pledge when I started writing is that I would be honest, that I would be fully honest. Not only about things that have happened from others, but about my stuff too, good or bad, indifferent, I wanted to be honest about it. I don't know how much trouble that'll get me into, but hey, it's the truth, at least as how I see it, so I stand by it.

Eric: You paint very vivid scenes when I read your stories.

Vanessa: Thank you.

Eric: Do you have any writing background?

Vanessa: No, I remember taking one class in college, just really being… I think I wrote a lot of bad poetry to get through medical school, but no real formal training until I really started thinking seriously about writing this book. As a research person I do a lot of scientific writing, but what I love about this kind of writing for a general audience is the artistic license that you have to be pretty with the writing and not just the medical terms. That's what I really enjoy about it.

Alex: You've picked out a passage for us. This gets one into one of the major themes in the book that comes in sort of more towards the end a bit, about the intersection of nephrology and palliative care, which is a fascinating intersection and kind of a frontier area within the field of palliative care. Do you want to set up this passage for the listeners?

Vanessa: Yeah, sure. I'm going to read a little bit from the chapter called “Three Ladies” where I describe one patient who really started me down the trajectory of wanting to really focus on renal palliative care. Then two other patients that I was involved with their care, who had very, very different experiences in terms of dialysis and end of life issues. I'm going to read a little bit about one of these first, the second woman.

When I met Mrs. Durante in the pre-dialysis clinic she was spending most of her time in a wheelchair, since a long, complicated hospitalization three years prior left her there. The long hospital stay was followed by an ever longer stay in a nursing home, which she said felt like torture and nearly killed her. She never wanted to go back.

She was only 63 in chronological years, but as I read her medical record and looked at the frail, listless-appearing woman before me, biologically she seemed closer to her mid 70's. She'd had strokes, she'd had surgery on the bones of her neck to release the hold they had on her spinal cord. She had heart failure, diabetes, so when she sat facing the fork in the road to complete kidney failure, she was unwavering in her refusal of dialysis. She'd had enough, she said.

Perhaps dialysis would not be beneficial in terms of adding quality or length to her life, I said and proposed conservative management of her kidney failure. We would treat the symptoms of kidney failure as they arose, without dialysis, accepting that eventually she would pass from kidney failure, if one of her many other health problems didn't take her first.

Her pale blue eyes widened in surprise, as if she expected me to argue with her, perhaps as the nephrologist who had seen her before me did. "Don't say that, you will die without dialysis."

"I'd rather die than go through that."

"Don't say that. It won't be so bad."

"No, no, no, I don't want it."

Instead, I had inadvertently called her bluff. Her poker face was exposed. "Well maybe a little dialysis," she conceded. She chose peritoneal dialysis and her daughter Josephina would help her do it. Jo was the youngest of Mrs. Durante's three daughters and completely devoted to her.

I agreed that peritoneal dialysis was a perfectly rational choice too, and was happy to support her in that decision as well. I had softened from my original all or nothing way of thinking about dialysis. If very old or very sick, then don't start it. If already on it and the patient becomes very old or very sick, then stop it. The problem with all or nothing is that most, in my experience, tended to opt for all in the off chance, or even delusional hope that all will restore the body to where it was before everything fell apart, or at least prolong its existence for a few more weeks, days, hours.

Alex One of the pieces you talk about in relation to these stories is, what is palliative care for people with renal failure? What does this mean? Because it's not morphine, it's not a morphine drip. It's not a lot of the standard treatments that are available for people with cancer, for example. It has to do with reducing pill burden, matching treatments to patient's goals. Could you talk a little bit about what does this mean? What is there at that intersection?

Eric: It's not all or none, it's not continue dialysis or you're a quote-unquote a palliative care patient.

Alex: Right.

Vanessa: Right. I think as I've gone along in the field, my thinking about it is changing because of just seeing more and more patients. I think the entire field has a really long way to go. In part I think dialysis itself it just kind of lulls into this space where we think, "Okay, they started dialysis, so we're done," but there's lots and lots of literature out there that shows that people who are dealing with kidney failure on dialysis have lots of symptom burden that we are, for the most part, not doing a great job at taking care of. Then when we think about all the advance care planning and end of life things, we're just not really addressing it at all, which is sad because a good 20% of our patients, our dialysis patients, die every single year. I think we're just creating a lot of unnecessary suffering when we refuse to acknowledge that and really address it.

Eric: I'm always impressed on service, on the palliative care service, when I talk to individuals. They may be dealing with other things besides their dialysis, they may have metastatic cancer, they may absolutely refuse other life-sustaining treatments. "I don't want to go back to the hospital, but dialysis, yeah, I want to continue that," because it's their community, what they've been living with for the past five years. It's the people that they enjoy, they talk to, it's their social environment.

Vanessa: Yeah, dialysis is a funny thing, because I think because it can happen in the outpatient setting, it's looked upon very differently than hospital interventions and things like being intubated and being on feeding tubes and that kind of thing. Dialysis is, this is just what we do. "As long as I go to dialysis, I'll be okay." That's the attitude that a lot of people have, without really realizing that it's still end-stage kidney disease and it's still taking its toll.

I think that's really what sets nephrology and palliative care apart from particularly oncology, where it's a little bit more predictable what prognosis is for people. Rather than nephrology, our population is just so diverse that it's really hard to predict it. Our default does tend to be just, "Let's just keep going."

Eric: With that said, one of your fastest growing populations, they're elderly, nursing home patients, who in your book you quoted, "They don't do very well."

Vanessa: Right, and there is a growing body of literature, mostly from Europe, where they've shown that people who are 75 and older and have serious illnesses besides end-stage kidney disease, particularly dementia, ischemic heart disease, they are not likely to gain any survival benefit from dialysis. They'll probably live just as long without dialysis as with it.

Then there's this issue of the quality of life. Dialysis is hard, it's hard on the body, particularly the older the body is. There is this question of, are we doing the right thing for people by putting them on dialysis just because they have kidney failure?

Eric: The other thing that your book made me think about, because you talked a lot about the different in your book about hemodialysis and peritoneal dialysis. I can't even imagine the last time I saw a patient on peritoneal dialysis.

Vanessa: Right.

Eric: But you also quote that other countries are very different in that. Can you expand a little?

Vanessa: Yeah, a lot of other countries have a much larger prevalence of people on peritoneal dialysis. In part because it's a lot cheaper and people ... That is the attitude that if you want to continue living you will do peritoneal dialysis because hemodialysis is so expensive and you can't afford it, so this is what you do.

In this country my experience is it's more like, "Well, do you want to do your dialysis every day at home or do you want to come to the center where the nurses and doctors will take care of you?" There's no limitation on - sky is the limit - in terms of what we'll spend.

I think a lot of people out of fear, like feeling like they can't possibly do peritoneal dialysis at home, which is another misperception, but also just feeling like somehow because it does cost more, or because the nurses and technicians and doctors are more often involved, that it's somehow better.

Eric: Could it also be how we're framing the issue to our patients?

Vanessa: Exactly.

Eric: Because I would imagine there may be a financial interest for dialysis centers and others to choose one over the other.

Alex: Money! What?

Vanessa: You’re getting into to all the stuff. You're getting into all of it. You know, I do touch on all of this stuff in the book, but I think, yes. When dialysis first became a thing there was a shortage of chairs, but now as the population of people with end-stage kidney disease grows, so do the number of dialysis facilities. There's no shortage of chairs and it is big business.

Eric: 30 billion dollars, is that what I read? Somewhere around there in your book?

Vanessa: Oh gosh.

Alex: Is big business.

Eric: Big business.

Alex: There is that quote from one of the nephrologists, "I would dialyze a dead tree if I could bill for it." Something like that?

Vanessa: Yeah, and granted, I think the system is currently set up for ... I mean there's some pretty perverse incentives, but at the end of the day, for the most part, I do have to say, because I do believe that most of us, most nephrologists, are really doing things that we feel are in the best interest of our patients, and are not so much thinking about the dollars. But at the end of the day we get paid more for seeing people on dialysis than we do in the clinic. The more we see them on dialysis, the more we get paid, so yeah.

Alex: It probably has to do as well with sort of the unconscious. Like they're influenced in ways they can't even appreciate, by the financial factors. That's something Sharon Kauffman's written quite a bit about. There's like this invisible hand that sets up the terms and the conversation in the room, that the doctors and patients aren't even aware of, but a lot of decisions had been made structurally before.

Vanessa: Right. I think too a lot has to do with what we are exposed to. There's several studies that have shown that people who, like in nephrology training, if they're not really exposed to peritoneal dialysis or home hemodialysis, they tend not to talk about these things to patients. One, because they'll be giving away their patients, but two, they don't really know what to say about it. I think all of that does factor into the fact that the vast majority of our patients with kidney failure are on in-center hemodialysis in this country.

Eric: That discussion about unconscious bias, or potentially conscious biases or systems issues that lead us towards certain outcomes for a certain population, also brings up issues that you also deal with your book, is… disparities in care. Particularly, one of the things I learned is black people on average, wait an additional two years for transplant than white individuals. Is that right?

Vanessa: Yes.

Eric: You talk about a fair amount of other disparities in care. Can you expand on that a little bit more?

Vanessa: Yeah, I think that was one of the issues that I was so taken aback when I first went with my husband to his transplant evaluation. He is black, and you know, just to listen to people talk, I just felt like, "Why are you all surprised that there are race disparities in kidney transplant? Look at how this is set up."

Eric: Yeah.

Vanessa: Yeah, and feel like there's just a lot of things in place that could be overcome if we wanted to, to make us have more equal access to kidney transplant. I do think people are thinking about it and trying. Like for example, a new rule went into place in December 2014, which basically said that regardless of when you get referred for kidney transplant, once they've determined that you're an eligible candidate, it dates back to when you started dialysis. Which does kind of even the playing field a little bit, because there's at least one landmark study a long time ago that showed that blacks were slower to get through to each step in the process to transplant.

Even for my husband, it was a year after he started dialysis before he was referred, and he had to bring it up. His nephrologist didn't bring it up to him. One of the things I talk about in the book is, I mean it's good, that rule is great and it does help, but it doesn't go far enough, because people can be listed for kidney transplant long before they get to the point of needing dialysis.

Since the waiting time, how long you're in line waiting for a kidney, is still one of the most important factors, it really matters when you get on that list. Because of our system and who has access to care, it is different for different people to have one, access ... I think just starting with one, knowing that you have any kind of chronic kidney disease. Most people are unaware of it. Then having access to a nephrologist, because only a nephrologist can refer you to kidney transplant. Then they have to, that person has to look at you, think about transplant as an option for you, and actually make the referral. There's lots of places in there, where there's room for just the racism on a system level, but then biases, conscious or unconscious, on a personal level.

Alex: Mm-hmm (affirmative), it's really interesting, speaking of what we started with, about how you're very honest in this book about the journey that you've taken, and sort of investigating these racial disparities in nephrology care. Early one you'd written an essay that was called “Good for Harvest, Bad for Planting,” is that right?

Vanessa: Yes.

Alex: You talk about how you sort of have been on a journey of discovery of all the multiple levels at which this complex process plays out, that results in disparities. I wonder if you could say a little bit more about that.

Vanessa: Yeah, that article was published in Health Affairs, the narrative matter section, in 2007. My husband and I had surgery in 2005, so it has been a full 12 years since our surgery and he's doing very well. But that article, I wrote it as a primary care doctor. One of the things that I acknowledge in the book is that I didn't have it 100% right, because I didn't know and you have to be, or at least I had to be on the other side of things to see all the actual nuances that go into people getting a kidney transplant.

Still, I believe at the end of the day, if we wanted to make it more accessible and more equitable, we could. Because we've shown that we can, we did it with dialysis.

Alex: Right. What are some of the steps that you think we should take to make the next step in addressing and eliminating those disparities?

Vanessa: Particularly for transplant access?

Alex: Mm-hmm (affirmative).

Vanessa: I think the more, I guess automated we could be, the better it could be. For example, take it out of the hands of individuals and some of that will mean that we have to overcome our kind of silos and electronic medical records and things. For example, if there was a national repository that kept up with people's lab results and lab testing, then patient could be informed directly about where their kidney function is and have a little trigger to, "You should talk with your doctor about this."

Also, if nephrologists were given that trigger as well, and then ask, "Why haven't you referred this person?" I think it would just force people to think about things. I think that would be an important step towards correcting our problems.

Eric: I'd like to ask about, not just the big things, but the little things that we can do in each of our practice. I was particularly struck by, is it okay if I read a little bit of your book?

Vanessa: Sure, sure.

Eric: One passage, and I'll read it here.

Medical school trains us to begin each case the same, however many year old, black, white, Asian, Hispanic, girl, boy, man, woman. The past medical history… blah, blah, blah, presented to the clinic emergency room with this or that or the other. This day I purposefully left out race. A 26 year old man with no significant past medical history presented to the clinic with proteinuria and microscopic hematuria.

I couldn't even get through the patient's medical history, which might give us clues to why the patient had proteinuria and tiny amounts of blood in his urine, before the most brilliant of fellows in my group raised his hand, "What's his race?" He asked. "Green," I said.

Vanessa: Yeah, I did. It was kind of lost on him, but yeah.

Alex: When I am next on the wards and the palliative care service, or the geriatric service, like, how should I respond? How should we be teaching people how to give that one liner?

Vanessa: I do think we need to get out of the habit of mentioning race in those first lines, because I do think it automatically paints a picture. We can't help it, we're human being and if someone starts telling us a story we develop an image of that. In medicine it starts shaping our differential for what could possibly be going on with the person.

We start out with this really broad differential, and every detail changes it. If I say a 26 year old, I'm automatically not thinking about geriatric conditions. If you say man, I'm automatically not thinking about things related to women, and if you mention race, then I'm automatically picturing that person and associating whatever I think about that race, whether I'm aware of it or not. That colors the differential too and narrows it in a way that I think really limits our thinking and at the end of the day, probably does a disservice to our patients.

Alex: I remember one of the most important lessons I learned in residency was, I won't have assumed a race. I was called out by the patient, rightfully so, and it made me rethink the vast majority of times when people actually put that in their one liner, did they ask?

Vanessa: Right.

Probably not.

Eric: Probably not. How does the patient self-identify?

Alex: Yeah.

Vanessa: Right.

Alex: It has important implications, not just for medical presentations, but also as you note in the book, how we can't calculate standardized values for blood tests for creatinine, for renal function for example, which might be based on race. Or pulmonary function, there are several examples that I remember learning in medical school. We had an adjustment factor for the patients.

Vanessa: Right.

Eric: Creatinine clearance! Right, we have an adjustment factor? Didn't that work?

Vanessa: I don't think so. I was really upset about it, particularly as I went into nephrology and realized the implications of it. One important implication is for kidney transplant referral, because you have to have an estimated function of this is the glomerular filtration rate. 20 ml a minute of blood flowing through your kidneys, every minute of every day, that is when you can be referred for kidney transplant. Whereas above 60 ml a minute is considered relatively normal.

When the unadjusted GFR is 20, the race, like if black factor can be more like 25. In my own experience I've seen the different between 25, a GFR of 25 and 20 can be years. Again, years that a person could have been on the wait list.

I think, I had an opportunity to ask one of the people very involved in the equation about did they, what was the thought in terms of putting a race label on it? The conversation didn't go so well, but basically it comes from muscle mass. It's supposed be a proxy for muscle mass, because the more muscle you have, the more creatinine and therefore it's going to make your kidney function really higher than it would be if you didn't have such great muscle mass.

But because it was a small study, my thing is it was only a couple of hundred people and they were only white and black. From that, you're making an assumption on an entire population and you're leaving out a lot of people.

Eric: A lot of people.

Vanessa: A lot of people.

Eric: Yeah.

Vanessa: That gets into other groups, like I have several American Samoan patients, or my Hispanic patients. They're like, "So where do I fit in?" I just think it gets into a lot of weirdness about our American history around race and I don't think the average clinician is really thinking, "Oh, my patient is black." Not, "Oh, do they have large muscle mass?" Or, "Does my non-black patient have large muscle mass and should I be using this adjusted equation or not?" I just don't think most of us are that thoughtful about it, because we like an easier path.

Alex: Are those equations still used?

Vanessa: Oh yeah, definitely.

Alex: So antiquated, right? It's like they institutionalized-

Vanessa: Yes.

Alex: -right? Like a form of race-based decision making that makes no sense. It should be based on muscle mass if that what you're trying to present. Right?

Vanessa: Right, you would think, but yeah. I think we have a lot of hangups about race within medicine, which is curious to me because we're supposed to be so science driven.

Eric: Right. I learned so much more from your book and love the fact that you painted these really beautiful, vivid stories.

Vanessa: Thank you.

Eric: When does your book come out?

Vanessa: It comes June 13th, and this is from Harper Collins Amistad. You can pre-order now directly from the publisher, or you can also go to Amazon or the indies like Books A Million, Barnes and Noble.

Eric: Do you have a national tour? Are you going to other places?

Vanessa: It's not completely national, but I am doing a lot of radio, TV, book signings, along the west coast, particularly L.A., Portland, Seattle. I'm doing some things in Chicago, Atlanta, as well as national things through New York.

Eric: Great. We'll have a list of those places on the GeriPal website associated with the podcast.

Vanessa: Wonderful.

Vanessa: I'll be, I've had a blog, thenephrologist.com, for three years now, but I'll be expanding that to be a full website with the same name and all. I'll have a page that will feature all of my various events as well as they come up.

Alex: Terrific. Should we do a little more Prince?

Eric: Wonderful.

Vanessa: Are we going to start at the-

Alex: Yeah, we'll start at the top again.

Vanessa: Really? You won’t do the verse?

Alex and Vanessa sing “Adore” by Prince

Vanessa: Okay. I thought we were going to get into the verses, man.




produced by: Eric Widera
transcript edited by: Sean Lang-Brown
post by: Alex Smith
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