ASCO Education

In this ASCO Education episode moderated by Dr. Rami Manochakian (Mayo Clinic), two-time cancer survivor and patient advocate Ms. Samantha Watson and medical oncologist Dr. Lidia Schapira (Stanford) discuss the multifaceted impact of high cancer care cost on patients and survivors. They also review communication strategies and resources oncology providers can offer to help alleviate financial toxicity. If you liked this episode, please subscribe. Learn more at education.asco.org, or email us at education@asco.org. TRANSCRIPT Dr. Rami Manochakian: Hello, and welcome to the ASCO Education Podcast Series. My name is Dr. Rami Manochakian. I'm a thoracic medical oncologist at the Mayo Clinic in Jacksonville, Florida. As today's host, I'll be moderating a discussion on what I believe is a very important topic when it comes to cancer care and its financial toxicity. I am very excited to have two wonderful guest speakers who are joining us today. Dr. Lidia Schapira, who's a medical oncologist with a focus and specialty in breast cancer and cancer survivorship. She's a professor of medicine and oncology and director of the Cancer Survivorship Program at Stanford University. We also have with us, Miss Samantha Watson. She's a two-time cancer survivor, patient advocate, and Managing Director of Stewardship at Expect Miracles Foundation, which is an organization dedicated to providing emotional and financial assistance to people with cancer. It's a pleasure to have you both with us today. Samantha Watson: Thank you so much for the opportunity. Dr. Rami Manochakian: Miss Watson, I'm going to start with you. Your story that I got to learn about is very inspiring. You had cancer twice as a young adult. You've gone through a lot. Can you tell us what was it like to go through that journey with two cancers, and a lot of treatments? Also, during that journey, definitely, you must have experienced a lot of financial and other social challenges. I'd like to hear more about that, please. Samantha Watson: So, I was a senior in college, and I'd had recurring knee pain that nobody could really diagnose for any reason. And it would come and go throughout my years of college. And finally, when I was a senior in college, I had extensive testing and they found Ewing sarcoma, which I had never heard of. My mom actually was an oncology nurse at Memorial Sloan Kettering. And so, I don't think it was on anybody's radar screen, but she understood the language way better than I did. What I came to learn was that Ewing sarcoma was typically diagnosed in boys under 20. And I was female and 21 at that time, and it was diagnosed about 300 times a year. So, I had no frame of reference for this. I had been around Sloan Kettering when I was a kid because my mom worked there, but I didn't know what it meant. I didn't know what cancer felt like. And I certainly did not know anybody else who had gone through it. But at that age and life stage, I was getting ready for my future. I was looking forward to graduating from college, I was looking forward to living on my own and everything stood still. So, the cancer was in my leg. When I was diagnosed, I went through nine months of high-dose chemotherapy. I went through a 12-hour surgery. I had to relearn how to walk and did a lot of PT. In that time, my friends graduated and they started moving forward and they started creating their lives. And I sat back and watched. I spent about four months at home after my treatment for Ewing's and I did my physical therapy. And I tried to figure out where to place cancer in my life as a young adult. And I went back to school and I had one semester left and I started to catch every cold that went around and strep. Just everything that goes around a college campus, I was constantly down and my doctors kept saying, 'Don't worry, your immune system just has been devastated by this chemo and you just need time to recover.' The day before my 23rd birthday, they did a bone marrow biopsy and found that I had Myelodysplastic syndrome, which was a very early form of leukemia. And a month before I graduated from college, I was told that I needed a bone marrow transplant. Thankfully, because the search was long, and did not really involve me as a patient, I was able to go back to school and graduate from college. I sort of closed that chapter and had a bone marrow transplant about three months later in August of 2001. And so, again, I was stuck in the hospital for months and months and months, watching all of my friends, again, graduate, go forward, get their jobs, and go on dates. And I sat back and watched and so my recovery, the second time, was very different because when I was freed from the hospital and able to sort of take my steps forward, I didn't really have anywhere to go. I had already graduated from school, I had not yet started working, and I have a very, very wonderful network of support from friends and family. But I wasn't really sure who I was and what I wanted to do. So, to make a long story a little bit shorter. I started working for a nonprofit organization feeling like there was something more I was supposed to be doing. One of the things I started to become aware of, in my own survivorship experience, was that the aftermath was really hard. And it was uniquely challenging as a young adult without very much financial stability, or no experience, really in the healthcare system on my own. But also, I didn't have any peers. Everyone that I had gone through treatment with had passed away with the exception of me being one person. So, I didn't have anyone to ask about this issue of young adult cancer and how to get my self-esteem back when I looked and felt different. And as I was sort of navigating these things, I got a bill in the mail for $275,000, which is an absurd number, anytime. But as a 24-year-old, who didn't really have any money in the bank. I mean, that was just completely impossible. Dr. Rami Manochakian: Absolutely. Wow! Samantha Watson: Yeah! So, very, fortunately, again, my mom was my best advocate. She spent two years fighting that bill, but I started to put the pieces together and realize that not only is survivorship hard, but it's financially challenging when you're on your own. And so, I put those two pieces together and created an organization called the Samfund to provide financial support to young adults once treatment has finished because what I kept hearing was that we all share this experience of feeling like we got pushed off a cliff. And then they threw all sorts of bills on top of us while we were down there. Dr. Rami Manochakian: Wow! Thank you. We're so glad you're with us after this many years. And you're doing well. That's wonderful, but definitely, I think what you've experienced on the other side, is what's after treatments. Dr. Schapira, we hear that term a lot, we as treating physicians, what does it mean to have financial toxicity and to go through it? Dr. Lidia Schapira: Well, first of all, I do think that Sam's story is so inspiring, and really illustrates what the lived experience is for so many people treated for and living with and beyond cancer. I think of financial toxicity as sort of an umbrella term that refers to the harm caused by the cost of receiving treatment for cancer. And the way that people are penalized with all of these bills that reflect a really difficult and broken healthcare system. I think of it in terms of the pain and suffering in a way caused by the burden of cost. So, there can be material aspects, such as new debt accumulation, selling or refinancing a home, a decline in income, having to take loans to pay for cancer treatments, and even bankruptcy. But there can also be psychological aspects, such as worrying about paying for treatment and being distressed. And there can be behavioral aspects, such as avoiding care or skipping doses of medications to save money. That is a story that we also hear as cancer clinicians. Dr. Rami Manochakian: Absolutely. I think you mentioned it, and I couldn't agree more with the burden. I mean, the patients have so much to worry about, the patients and the caregivers, about their journey, fighting cancer, going through treatment, and then adding that extra burden and worrying about day-to-day life, their kids, and their future. Definitely, that's a lot. Miss Watson, with you with the society or the organization that you're leading, you're getting a lot of calls from a lot of patients who need help. How are we doing in the last decade or so in this field, in this aspect? Samantha Watson: On the one hand, I take it as a very promising sign that we're talking about it, because when I got that $275,000 bill in the mail, if my mom had not been a nurse and known that system enough to navigate the appeals process and all of that, I would still be paying that bill off, if I hadn't already declared bankruptcy. Nobody was talking about it back then. Financial toxicity was not a term that anyone brought it. Nobody talked to us about our bills. So, I do think that conversations like this, and many others like it are very hopeful signs that we are headed in a good direction. That said, the costs are only getting higher and the economy is only getting harder, and I think we're starting to see the many ways in which this plays out for anyone who's touched by cancer. At the Samfund, we were focused on the young adult population. Two and a half years ago, we merged with an organization called Expect Miracles Foundation, and we still provide Samfund grants to young adults. But we also provide funding for innovative cancer research and hear from thousands of people every year who are diagnosed with all sorts of cancer diagnoses at all ages. One of the things that have become very clear to me is that young adults face financial toxicity in a unique way because they have a lot of things stacked on top of each other given their age and their life stage. But the issues really aren't unique to young adults at all. I think what we have seen is that financial toxicity affects essentially anybody who is diagnosed with cancer and/or as you said, is that the caregiver or family member and is directly impacted in that way too. So, I think, on the one hand, the problem is getting worse, but I do think it's hopeful that we're getting closer to finding solutions and at least a willingness to talk about this. Dr. Rami Manochakian: Thank you! Dr. Schapira, we live in an era of hope for patients with cancer. The number of drugs, the number of procedures or advancements in science, the research, and education really are great, and we're helping many patients live better and live longer. But that's of course, coming at a cost. I'm a lung cancer specialist. Half of our patients now with advanced cancer have their cancer harbor mutation that we prescribe some great treatments, very effective, but very expensive bills. I think when we talk about financial toxicity, there are so many aspects, there are the drugs, the pills, the infusion, the scan, and employment, can I keep up my bills? What can you tell us about the different aspects of financial toxicity? Dr. Lidia Schapira: As you say a lot of innovation is associated with a high price tag, and rising healthcare costs are being increasingly offloaded to patients by ways of rising premiums and out-of-pocket costs. So, when you talk about targeted treatments that bring a lot of hope, we also have to remember that with a rising number of prescriptions, some of the drug plans have tiered formularies, where expensive specialty drugs typically fall into the highest tier. And so, patients are often responsible for a percentage of the total cost of the drug, as opposed to a fixed co-payment. So, if we get more granular about this, we can say some of these drugs may cost in excess of $10,000 a month and are covered through some of these outpatient prescriptions as part of a health insurance plan. But in such cases, a patient who has a tiered formulary that requires a 20% coinsurance for a $10,000 oral cancer drug may have an out-of-pocket cost of about $2,000 a month. I'm just putting some figures to this because these numbers are very hard to manage for so many of our patients, and we're all in a bind. We all want this to be different. But this is the reality that we as oncology clinicians, and our patients and families face every day. Dr. Rami Manochakian: Absolutely. Thank you. We want and the patient wants the most effective treatment, regardless of cost. But then how can we integrate that into our shared treatment decision planning or making? Samantha Watson: I do think that there are things that we can do, I think it's really important to recognize that this is the responsibility of a group. It is not just a provider's responsibility to bring it up, because then as Dr. Schapira was saying, you have to know the details of every individual patient's insurance situation, and income situation, there are just so many variables that can affect people. And it's unreasonable to expect any one oncologist to keep track of all of that. So, as a patient, I recognize how big that ask is. At the same time on the patient side, I think it's one of these situations where patients don't know what we don't know. And as someone who is diagnosed with cancer, especially at an age when I have never had to advocate for myself before, I wouldn't have even known what questions to ask, I think when your doctor says, here's the drug I'm prescribing, you take it. And I think that even now, with all of the research that's been done, and all of the focus on financial toxicity, still most patients' inclination is to trust their doctor and not ask, is there a more affordable option, because there's still this perception, as you said that the most effective treatment is also the most expensive and nobody wants to sacrifice their chances of survival to save money. And so, I think in the end, this is a group discussion. I think there need to be financial navigators or patient navigators, if they are available to the patient. I also think that patients, caregivers, partners, parents, children sometimes, depending, can also be part of that conversation because, in everything that I have learned in the last 20-plus years, I still think that had someone tried to talk to me about my bills too early, I probably would have tuned it out. But that's not to say those conversations aren't important and sometimes somebody else in the room who can hear it better. And so, I think if this is a collaborative effort on the part of patients and providers and family members, and other professionals within the hospital, then absolutely it should play a part because there may be other ways to either manage the high cost of treatment or lower the cost altogether. And sometimes it requires getting creative, knowing if somebody is going to need to take time off work for these treatments or to deal with the side effects that could have a devastating effect because, in the end, financial toxicity isn't just about the cost of treatment. It's about the full financial impact with many moving parts and employment is one of them. So, I think it's really important also that this is an ongoing conversation, this is not a one-time conversation and people's situations change, and the ability to hear, and process information changes depending on where the patient is and how they're feeling on that day. And so, I think this is certainly an ongoing effort, but also has to include more people than just the provider and the patient alone. Dr. Rami Manochakian: I love it! I couldn't agree more. Here is a caveat or challenge, which I'm going to ask Dr. Schapira. As an oncologist. I couldn't agree more with what you're saying, but I don't know and maybe a majority of oncologists, Dr. Schapira, we don't know a lot about the cost, at least upfront, we know the drug is cost like this, or the scan or what's going to happen, but an individual, we don't know what's the patient insurance plan. I feel sometimes that I'm not able or equipped to discuss the cost of care up front. And that sometimes could create friction, because maybe we owe it to our patients to discuss. So, what do we do as oncologists or as oncology healthcare providers as a team? Dr. Lidia Schapira: You ask a wonderful, multifaceted question. So, the first thing I would say, and what I've spent my entire career doing is we need to be empathic listeners. And we need to create a safe space in our consultation and exam rooms so people can tell us what's on their mind. So, we may not be able to fix it but we need to be able to talk about this, if it is burdening our patient, just as we talk about any other toxic effect of the diagnosis and treatment. That's one thing we can do. We can do that by routinizing the conversation by asking at multiple points when somebody is ready, or before they're ready, perhaps talking to somebody in the family, we need to be thinking about it. But I think that it's complicated for us too because we are also stakeholders and we also are committed to treating patients with beneficence and advocating for justice, and we see all the harm that's been caused by the system where all of these burdens are placed on people at their most vulnerable time. And we all think it's not particularly fair. So, I think that part of the conflict for us is that we feel we could do more for each patient. We feel we would like to do more collectively for all of the patients under our care and the care of our colleagues. So, I think that part of that sensation, a feeling that we don't have sufficient power to fix it, may get in the way of us really collaborating in an open and empathic way with our patients who are experiencing these issues every day. We can think about what tests we order. We can think about the co-payments for the imaging tests. We can think about talking about whether or not they can afford those ancillary medications that we prescribe with great intentions to make their life more bearable. So, there's a lot we can do. There's a lot we can do. I think we need to support each other. We need to link arms and advocate together for a more just system, but we can't not do anything about it. Dr. Rami Manochakian: Thank you. This is, I think, very important. It really struck me when you say, look, even if we don't know, well, we're going to talk later on about resources and referring patients. But I do think that patients would like to see their oncologist or hear their oncologist or their treatment providers, or caring providers bring up the cost. I think just like we asked them about their side effects and about how are you doing and what's happening and quality of life. I think bringing that up, making them feel that we are with them on this journey, even in these details, which often don't come and I'm sure many of our listeners are interested in asking what resources are out there? Of course, each institution may have its own resources. But, generally speaking, what should we tell our patients? Where should they start from the patient caregiver? What resources are available to avoid or reduce financial toxicity? Samantha Watson: I think in order to answer that, I also want to reiterate something that Dr. Schapira said from the patients' side, because I think that oncologists don't have to have the answers, that is obviously asking way too much. I think sometimes just bringing it up or acknowledging that there is a cost to this and that it is going to have an impact on someone's life is exactly the validation that a patient needs because culturally, we don't really like to talk about money. We're not really all that comfortable talking about illness either. And so, when you put those two things together, it is a conversation that nobody wants to have. And so, what we hear from thousands of patients every year is that they are so ashamed by all of this. They feel like they have done something wrong. They feel like their doctors aren't going to get paid if they have an outstanding balance. And there's so much just misperception about how all of this works. I think just to bring it up to a patient to acknowledge it is so critically important. As one example, when we were trying to find ways to tell the story of young adult cancer and financial toxicity at the Samfund, we ended up using 'Cancer isn't free', as our tagline. And when the team of volunteers who came up with that presented it to me, I actually cried, they will tell you that I cried in a meeting when they told me that because it was exactly what we needed. I think, especially in the survivorship. Everyone, patients, family members, and friends assume that you're cancer free, and that, therefore you're fine. And so, to flip the script a little bit and say, 'Well, wait for a second, cancer isn't free,' opened up so many conversations. We certainly didn't get any closer to lowering the cost of cancer, but not carrying around the weight of this shame and just fundamental discomfort in asking for help after treatment especially, it just opened up more conversations, and we saw so many young adults and other people take a deep breath. And so, I think bringing up these conversations, even if they don't lead to immediate solutions is a really important first step. And so, with that in mind, I would say that any nonprofit hospital has to have a financial assistance program. They don't always advertise it very well and they don't always make it very easy to find on the websites. Some hospitals do a better job than others, but these programs are there. The parameters vary, as you said, depending on the hospital and its resources. But I think as a starting point, anyone who's interfacing with that patient should at least say, 'If you're struggling financially, if a bill comes in that you don't know how to handle, please give a call to this.' It can either be the patient assistance program, a financial navigator, whatever your particular hospital calls it, and just give the person the resources that they can access it when they're ready. So, I think that's a really important first step and a doable one, because it's a referral, nobody has to become an expert in that particular program just to know that it exists and to share that contact information. The other thing I would say is that there are many, many more patient advocacy groups now than there were 10 years ago, and certainly than there were 20 years ago. And so many of the people that find us as one example, find us in a Google search. So, anyone that is looking for help with finances, help with bills, cancer bills, I mean, there are all sorts of combinations of words they can search for, they will find the groups that they need. They just don't always know that they're supposed to search for it. I think, again, bringing up this conversation, whether it's put in clinical terms like financial toxicity, or more informally, like, 'Hey, how are you doing? How's your job? How's your stress level?' Trying to gauge what their biggest challenge is, can sort of inspire them to go home and seek out the resources they need. But until these conversations even start, they don't know what they don't know. Dr. Rami Manochakian: Absolutely, thank you! These are very helpful. Dr. Schapira, on our end, the providers, what tools and resources can we go to help us, clinicians, discuss financial toxicity more comfortably with patients? Dr. Lidia Schapira: First, I would say to be comfortable in just talking about it and being open and receptive. The second is to build some expertise in the team. We don't have to carry this. We need to be part of the solution but we don't have to have all the fixes. I think the idea of financial navigation is gaining traction with our colleagues. There are some people who actively are embarking on research, including a very interesting randomized control trial of a financial navigation intervention that's currently underway. So, I think that we need to have people who are available to us that we can call, who can help patients understand their bills, who can help patients find sources, perhaps that can help them with payment, to find the nonprofits or charitable organizations, that can help them fill out forms, help them with legal aid, if that's what they need, help them apply for pharmaceutical assistance or health insurance. All of these are very concrete tasks, and we need to have some capacity in a cancer team to deliver these. And I think for us, as oncologists, what I would love to leave us with is the idea that we can't wait. There is an urgency of getting all these things implemented. And we can do it in any number of ways, but it's something we absolutely need to deliver to our patients. Dr. Rami Manochakian: Absolutely. Thank you for bringing that up. As you both mentioned, it's very good that we're talking about it more. I'm remembering a patient of mine who told my social worker, and kudos to all the wonderful social workers and case managers out there, these patients advocates out there are a very important part of the team, not just the doctors, the nurses, the others. They're looking after the patient in so many aspects. I remember my social worker telling me, well, the patient did say, 'Please don't bring this into much detail to Dr. Manochakian.' And when she asked her why? And she said, 'Well, because I don't want him to worry about that part. Let us worry about this part.' That struck me. The patient doesn't want me to worry about her or his financial toxicity. I mean, of course, we need to but I don't want to make it sound like the sky is blue. That, yes, that should be something easy. No, it's not easy. An important challenge is time. A lot of time the social worker would tell us, 'Well, we also understand that you don't have time for it. Your visit with the patient is 30 minutes or an hour. We do know that in the community, sometimes visits are shorter, you don't want to just ask and then change the topic. And if you ask for a candid conversation about financial toxicity, it's gonna take time. Where do you have that time?' So, I don't know. Dr. Schapira, if you have a solution for that, or an idea because it is, I think a major challenge is time and this is maybe where the social worker and other people help. But this conversation needs time and there is in this day and age in health care, there is not much time. Dr. Lidia Schapira: My short answer to that is we need to build teams that have the capacity to absorb these issues, just as we've learned to deal with other difficult conversations and other difficult topics that are such an important part of people's lives. And remember that this just doesn't affect cancer care. There may be other specialists, there may be primary care physicians who were also there trying to assist patients and families, and there may be other decisions that are linked to whether or not they receive cancer care, or what kind of cancer care they receive. So, I think that we're all in this together and my take home is that we all need to have this capacity in our settings wherever we deliver cancer care. Samantha Watson: One thing I would add also is that cancer is not a single appointment, right? We all know that. I probably spent more hours in the clinic, the years of my treatment, than I did in my own house. So, we have a lot of opportunities to do this. I'm thinking about the many days either inpatient or outpatient, when, for example, a nutrition specialist would come and see me because I couldn't eat and my weight was dropping, and everybody was concerned about that. And on some days, I just didn't want to hear it, I wasn't hungry, I couldn't stomach whatever she was trying to give me. But on other days, I took it and was ready to try and put the weight back on and take her suggestions, and I was just in a different frame of mind. And so, I think that if there is a social worker, a financial navigator, somebody who can make some of these referrals to organizations and to assistance programs within the hospital, that even joins one of the appointments for the last five minutes, or pokes their head in every so often to check-in. We have a lot of different opportunities to do that because most people also are spending time inpatient. And so, I think this probably also is a learning opportunity, right? We see what works. And we see we will learn from this because we're figuring this out in real-time. And hopefully, five years from now, 10 years from now, we will look back on this time when we started to have these conversations and try out different strategies and get to the root causes of some of these issues, and we will have figured out solutions. But I think for right now we just need to try. Dr. Rami Manochakian: Well, thank you. This has been really very insightful from both of you. I really appreciate everything you share today. As we are reaching the end of this podcast, I'd like to ask each one of you to give all these wonderful patients and caregivers, anyone who's involved in cancer care out there, a final message. I'll start with you, Miss Watson. Samantha Watson: One of the things that we have touched on in this conversation is that financial toxicity is not limited to the cost of treatment, and therefore the experience is not only felt while someone undergoes treatment. It extends well into survivorship. It extends to employment issues. It extends especially for young adults to family building challenges, which can be very expensive. And this is an ongoing issue but the thing that I would leave people with is that there is a way through it. I have done this work for 20 years. I have heard thousands upon thousands of very similar stories, not just about profound financial struggle, but about resilience and about determination. And if this is just a matter of connecting the dots, and we know that there are some resources out there, we have to make sure patients know about them. We have to arm providers, social workers, and other professionals with the confidence and the information to share but I think if we can do that well, and when we do that well, we have already seen that, especially in the young adult community, which is the one that I know best, so many of these incredible patients go on to live very happy and wonderful lives. And if I have an example, I had my bone marrow transplant almost 21 years ago. I have dealt with plenty of side effects and a lot of bills. I've been happily married for 15 years. I have a career that I love, and I'm a mom to two beautiful children. So, with the right support, and with the right mechanisms and conversations in place, people absolutely can move forward through this. Dr. Rami Manochakian: Thank you! Dr. Schapira? Dr. Lidia Schapira: My final comment is that we have learned a lot through research and through conversations, we know that there are some who are at greater risk for financial toxicity and harm, and those who are the younger patients are the ones with lower income, particularly black rural patients. So, we need to redouble our efforts. We need to do this with compassion. We need to do this as part of the work that we do. We need to involve people who have special expertise in this and bring them into our cancer team. And we too, I think, need to feel that this is a general fight that we all need to get involved in to make cancer treatments, and particularly the novel, cutting edge cancer treatments more accessible for everybody who comes to our care, and without burdening them for the rest of their life with the consequences of treatment. Dr. Rami Manochakian: Thank you! You couldn't have said it any better. I do like to mention here also since this is an ASCO podcast, I'd like to highlight the efforts by ASCO, the American Society of Clinical Oncology, and many other societies to be fair out there in their advocacy efforts with Congress, with the government about what can be done more also at a higher level to try to increase access in more effective, more affordable health care. And this was very insightful. I'm positive, it's very helpful for many listeners, patients, and caregivers out there. As you both mentioned, to further highlight the importance of keep talking about these topics, to tell every patient out there that help is there. But you need sometimes to remind yourself to ask for help. Don't be ashamed of talking about financial toxicity, bring it up. We as healthcare providers know we're not doing a great job yet at it, but we need to help each other patients and healthcare providers, and all the team members to talk about this topic more and see how we can help. The conversation needs to be continued about financial toxicity for patients, cancer survivors, continue to communicate, share the resources, and definitely, I think the future will be better. It needs time, but hopefully, we can get there slowly. Thank you so much, both of you Dr. Schapira and Miss Watson. Thank you so much to our wonderful ASCO staff. Thank you to our listeners. We appreciate you tuning in to this episode of the ASCO Education Podcast. Have a good day everyone. Unknown Speaker: Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

In the second of this two-part conversation Drs. Patrick Loehrer and David Johnson sit down with Dr. Deborah Schrag, the current Chair of the Department of Medicine at Memorial Sloan Kettering Cancer Center to continue the discussion of her roles as a leader, researcher, oncologist, public health expert, and more. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org. TRANSCRIPT Dr. Dave Johnson: Hi everyone, welcome back to Oncology, Etc. an ASCO educational podcast. My name is Dave Johnson. I'm at UT Southwestern Medical Center in Dallas. And I'm here with my good friend Dr. Pat Loehrer who serves as a director of Global Oncology and Health Equities at Indiana University. In the second half of our conversation with Dr. Deborah Schrag, the current chair of Medicine at Memorial Sloan Kettering Cancer Center in New York. In part one, we heard about Dr. Schrag's early life and background, as well as the importance of affordable cancer care and much more. Let's jump back into the conversation and hear about her current goals and initiatives at Memorial Sloan Kettering. I have a question for you. Jumping ahead a little bit. But I mean, you're such a role model for all of us. But you're now in a very powerful position as head of medicine at the preeminent cancer center in the world. So, I'd be interested in knowing what are your top initiatives? What did you come to this role wanting to do short-term and long-term? I'd be curious to hear from you about that. Dr. Deborah Schrag: Yeah. So, I have lots of specific initiatives, all the things that are probably very similar across medical cancer centers. We have to figure out the role of immuno-oncology. We have to figure out the role of CAR T-cell Therapy. There are lots of specific things, but let me tell you about three sort of overarching principles and things that I think we need to think about. So, one of the reasons why I decided to leave my job where I really focused on training researchers and building a research program to lead a department of medicine that has a mix of clinicians, educators, and investigators is that there's really a profound sense of exhaustion and disconnection. I'll use the word even burnout or people get the sense of losing the joy in the practice of medicine. And as corny as it sounds, and I know I'm going a little corny here, Dave. But I really want to help bring back and connect people to the joy in the practice of medicine. It's the joy that we experience when we crack a tough case, when we help a patient, when our patients make us laugh, when our patients and their families make us cry, when they drive us bananas, when they cook us food that is inedible, just reconnecting us to the joy, to the stories. I really wanted to try to be a different kind of leader because I felt that I could make a contribution to the field of academic medicine in general and oncology in particular, by working with faculty to set them up to tap into that joy, because I know they all started with it. I know they all went into medicine because they care about those human stories, because they do want to make a difference. This past week, a fellow intern of mine who you may know, passed away. His name was Paul Farmer. He was the head of Partners in Health and he was an infectious disease physician. There's a book about him by Tracy Kidder that's really moving. There's also a documentary about him called, Bending the Arc, which I would highly recommend. Paul was an incredible inspiration, just incredible, but he brought so much joy to the practice of medicine. I remember when Paul was going to some of the poorest places on the planet, specifically Cange, Haiti. He got an idea that he needed to bring chemotherapy because there were large cancers that were untreated. And he wanted to get leftover chemotherapy from the Dana-Farber. So, in the 1990s, when I was a fellow, he would ask me whether I could get him any leftover Taxol. I was like, 'Paul, I can't do that. It's not safe. You can't take leftover Taxol to Cange'. And he said, 'Deb, just wait, the drugs will be oral soon, and then I'll get it'. But guess what? Paul came back to me in 1999, and capecitabine had been approved. The oral equivalent of 5-FU. He held my feet to the fire. He said, 'Every time you have a dead patient, if there's any leftover capecitabine, I want you to get it for me'. Inspirational leadership, connecting people to the joy in the practice of medicine. I would say that's number one. There's no one simple formula or way to do that. It's hard work. It requires a team I think a lot more teamwork into the practice of medicine. I think we're coming out of a hard two years where we've been confined to Zoom boxes. But it's a lot easier when we can sit together in a room and have a pizza and a beer on a Friday afternoon. But we have to figure this out, and we will, step by step. The other big thematic area, I think, has to do with the patient experience. Dave, I mean, when I started out as a fellow, patients with advanced lung cancer were living for 10 months, 10-12 months, that was a pretty good run with advanced metastatic non-small cell lung cancer. Well, these days, it's 2-3 years, and there's even quite a tale of patients who were living 4-5 years. And that is a long journey. It's no longer the 800-meter sprint, it's a half marathon, turning into a marathon and even an ultra-marathon. So, the way we deliver care needs to change. So, we're really rethinking here, how we deliver care. So, as an example of some, if you go back to the 80s and 90s, cancer chemotherapy was something that happened in the hospital. And in the last quarter century, we've transitioned that to an outpatient practice. I think in the next quarter century, we won't transition all of it, but we will transition a lot of it to home. As an example, I'm struck by when patients undergo IVF, they get handed some Lupron and are taught how to self-administer Lupron every day, so they can undergo a fertility cycle. But when those same women get breast cancer, they have to come into the clinic and sit and wait and take half a day off of work to get the same Lupron. The same is true for men with prostate cancer. Why is that? It's because of policies, and it's not safety, it's not patient-centered. So, I think we have an opportunity to change the patient experience. I think we'll be able to give immunotherapy at home, and HER-2 agents at home. We have to do the trials and make sure that it's safe, but we have to make cancer care more patient-centric and improve the experience. And that's just essential when it's a marathon that we're asking our patients to run, not these 12-month sprints. Families need this also. So, those are a few of the challenges that I want to take on. Joy in medicine, patient experience, and of course, the physician-scientist pathway needs to be strengthened. Dr. Pat Loehrer: I love it. You can imagine between Dave and me, I think that resonates so much about having joy in medicine. I've not heard other people talk about that, but I really think that's an important vocation. But I'm going to ask you something else too because, in the efforts of being joyful and being a role model for that, there's the other side of it, where you can't actually let your hair down, and really be depressed, if you will, or down because you can't let the other side see that. And so, who do you lean on if you will, your confessor that you can talk to when you're feeling down when you're trying to fight the anti-joy part of your job? Dr. Deborah Schrag: I have lots of friends outside of medicine. And I've always found that that's really helpful to make time for friends outside of medicine. They help connect me to humor and other things. I'm coming up on a big high school reunion. My high school classmates and I still meet for picnics in Central Park. And there are about 120 in our graduating class. And I think we'll have about 110 of us getting together. We still have picnics with 40-50 people attending. So, there's nothing like old friends from childhood who now do all kinds of different things. So, that's really helpful. But I've also found that my mentors and colleagues who trained me and who know me really well, are a great source of advice. So, leaders in academic medicine, and I've always found that I've been able to get advice from people who were senior and leaders, people such as Dr. Mayer, Dr. Benz, Dr. Jim Griffin, and also junior colleagues. I now increasingly as I get old, I rely more and more on my trainees and my mentees. So, some of the folks I know best are people who I trained. So, I'll just give you one example. Many of you may know Ethan Basch. We worked together when we were both just coming up. I was an assistant professor. He was a couple of years behind me. I mentored him. Well, he's now chief of the Division of Oncology at UNC. He and I have written lots of grants together. We're really partners now. But it's been a lifelong professional friendship. Sometimes when I just need to let my hair down, I get on the phone with Ethan, and yeah, there's a little bit of commiserating. But I'll give you an example that runs through Dave. Some really valuable experiences had to do with being asked to serve on committees. I think it's great. I just want to give a shout-out to ASCO. Some of my earliest professional relationships were with superstars that I met through ASCO. So, people like Joe Simone, reading his Simone's Maxims everyone needs to read Simone's Maxims if you haven't. There was a guy by the name of Christopher Desh, who sadly passed on. But he was an ASCO member who practiced at the Virginia Commonwealth University back in the late 1990s. Boy, did that guy understand the joy in medicine, some of the early folks who started QOPI. Being introduced to those individuals who practiced in different parts of the country and who had different kinds of challenges - having that sort of rich network has been incredible. At some point, I think through such a connection, maybe it was through Dr. Mayer, I was referred to Dr. Johnson, who was then running the American Board of Internal Medicine committee that wrote the oncology exam. I participated in that for a few years that was led by Dr. Johnson. And I met incredible people on that committee, including Dr. Johnson, just Dr. Johnson's stories could inspire anyone and get them back on track just in terms of the humor and the joy and the love, and really the pride in the profession. But I met Jamie Von Roenn that way, who's now leading educational efforts at ASCO, she was on that committee. Lynn Schuchter became a good friend of mine as a result of that. So, I would just say, sometimes you need to get out of your own space. And sometimes I need to get out of Dodge, as they say, I need to get out of New York, get out of Boston, and being connected to colleagues across the country has been so rewarding. I have a network of friends at other institutions who I rely on. Serving on external advisory boards is a great place to meet people. Study section, if anyone has the opportunity to be on study section. That's a fabulous opportunity. So, I think participating in peer review, showing up at meetings, serving on ASCO committees, or ASH or AACR. These are really important experiences. And I will say in my leadership role, I'm really trying to make it clear to faculty that I encourage them to take time to participate in these activities and attend these events and even travel because the traveling is important, too. I could not have gotten the same dose of Dave Johnson, if I had not actually gone to the meeting, spent all day writing board review questions, and then having a nice meal afterward. That was part of the experience. I don't know what you would say, Dave, but that was my view. Dr. Dave Johnson: So, one of the things that Osler talked about was the fellowship of the profession, and how important it is to have those relationships. Even if one can't physically be with that individual, developing that spiritual relationship is really critically important. I'm so glad you brought this up and expanded on it in the way you did because I think it's absolutely critical to retain the joy of medicine. It's our colleagues, as well as our patients that make it such a marvelous, majestic profession, in my view. Dr. Pat Loehrer: I was going to just add something if I could. So, Deb, replace me on the ABIM, just to let you know, because we had certain slots on there. One of the not sure if it was the rules or guidelines that were mandated is that everyone needed to take the oncology boards, even though we wrote the questions, we had to take the test. And you knew that and you had such unbridled enthusiasm for this. I still remember this deeply, and that not only did you recertify for the oncology board, but you also studied to take the medicine boards too. Your love of medicine is so contagious. And I'm sure everyone at Memorial benefits from this. Dr. Deborah Schrag: Thank you. That's very nice to say. I do, I love the stories. I've been rounding with the house staff on the inpatient service. I think both of you know, inpatient oncology, as we're able to do more and more in the outpatient setting, our inpatients are very, very sick. And we often get a front-row seat to what I would call the social determinants of health challenges. In other words, if you've got relatives and resources, you may be able to be at home. But if you have severe pain or symptoms, and you lack the relatives, or you live on a fifth floor, walk-up, or just don't have the resources to get the home care that you need, you're more likely to be in our hospital. But as I round with the house staff, I find myself asking them to tell me more about the patient stories. Because when I round and they tell me that it's a 74-year-old with peritoneal carcinomatosis, jaundice, and abdominal pain. I'm so old that I've seen so many hundreds of those patients and the management hasn't changed very much. But what's really the privilege is to understand the journeys that got people where they are, and to learn a little bit about who these people are. I try to do that when I round with house staff and I find that it makes the experience better for them. I have to say that I do worry about how we train young physicians in oncology because what they see on the inpatient side is really the hardest of the hard, that's obviously less true in a leukemia service, where they're delivering lots of curative therapy or a stem cell transplant service. But in solid tumor oncology, it's really hard. I think it's something we have to have to tackle. We have to rethink education and medical oncology. I'm hoping that we're going to do that. That's also on the bucket list, by the way. I think we have to do that as a profession. And I know both of you are passionate champions and advocates for education, as is ASCO. But I think it's really imperative that we do that if we are to keep attracting talent. And then I just want to make one more point, which is that New York City is one of the most diverse places in the United States. I don't know about the planet, because I don't know the whole planet. But in the United States, we are incredibly diverse. But the oncology workforce does not yet look like that. So, we have a lot of work to do to train a much more diverse workforce. We're doing well with respect to gender, very well. We're literally about 50/50, we may even have a little bit higher proportion of women on the faculty here at MSK. And I think that's true nationally as well. But with respect to Blacks and Hispanics, and other underrepresented communities, Native Americans, we've got a long way to go. And we have a pipeline problem. And that's going to be hard. But it's hard work that we have to do, and I know you guys are working on that in your own centers as well. Dr. Dave Johnson: Let me follow up on that. What attributes are you looking for in trainees and newly hired faculty? Whether they be junior or senior faculty? What are the characteristics or attributes you seek that you think predict, or certainly you want your individuals to possess? Dr. Deborah Schrag: We all want people who have everything, but I would say creativity, the willingness to take risks, and the ability to ask a question. I say this to the trainees, frankly, I say it to my own children as well. 'It's okay, take a harder course. Yes, you may get a B minus by trying something new and different, that doesn't play to your strengths. But try something new. Take risks. Yes, the trial may fail. Yes, you may not get that grant.' But I think a willingness to take risks, a willingness to put yourself out there, a willingness to stretch. I'm also looking for people who can work in teams because there is no aspect of medical care that happens in MSK, I suspect that it's also true that maybe medicine in Antarctica, but even medicine in Antarctica is probably a team sport. Medicine has become a very complicated team sport. It's a very complicated dance with pharmacists, nurses, and APPs. It takes a village to give a course of immunotherapy. It is very complicated. And so, when people like to control things and like to do everything themselves, they're going to have a hard time. And that's true I find for teaching, laboratory investigation, wet lab, dry lab, most good, impactful, important science in oncology these days, clinical trials, wet, dry, all of it gets done in teams. Teams that have people with different levels of training, different skill sets, early stage, late stage, people who are quantitative, people who can write, people who can program, people who can do lab experiments, and people who know what an organoid is. People who know how to program an in R. All different kinds of skill sets but they have to be able to work in teams. People who can't do that are going to struggle to achieve maximum impact. I'm not saying that there isn't room at the end for the occasional genius person who likes to work solo. But that's not really what we need to move the needle. So, I need team players. I think there is a big emphasis on collegiality. Of course, we want smart and we want brilliance. But sometimes a drop less brilliance and a drop more collegiality and being able to work together in a team, it goes a long way and it's the difference between doing something impactful and not. That's what I look for. I also think that it takes all different kinds of people. And no one has to excel at everything, but it's great for people to be able to excel at something. So, passion, drive, and ability to ask questions, and not being afraid to occasionally fail and having some tolerance for that and trying to make sure that leaders are able to tolerate that, too. We have to be able to. Dr. Dave Johnson: Yeah, I think those are great suggestions. We're getting near the end of our time today, and we have a lot more questions to ask. But what's your biggest fear, as the head of the Department of Medicine, looking to the future, what causes you to lose sleep at night? Dr. Deborah Schrag: I think the business of medicine. If medicine turns into something that feels just like [inaudible] work, and losing physicians, if we don't respect physicians' need to take care of themselves, to take care of their families, and yeah, to find that joy, then we will not attract the top talents. I think we need great minds and great hearts and people from all walks of life to enter the profession, because that's the talent that we need, to quote my friend, Paul Farmer, 'Bend the arc'. And you know, we need to bend Kaplan-Meier curves in the right direction. And we need the talent to come into the profession, and if they see that we are not happy and not thriving, the next generation is going to go elsewhere. I don't want to begrudge my wonderful endocrinology colleagues. We need people to tackle diabetes, and we need great surgeons and great anesthesiologists, too. So, it's not just oncology. In medicine, I'm responsible for all kinds of discipline. And boy, we need a lot of cardio-oncologists because we've created all kinds of new challenges. So, it's all of the sub-disciplines of medicine, but I think physician well-being and attracting talent to the field is really essential and making sure that the business side of medicine doesn't take over and destroy the core promise and premise of academic medicine. It is a spectacular profession and calling, and it has led to so many advances that have really changed the world. And we have to, I think, preserve the good in that. My fear is that that gets further eroded. Dr. Pat Loehrer: Just one last question from me. Thank you for all your wonderful comments. But I think I have to ask this because it's such an unusual thing as they brought up at the beginning that you're the first female Head of Medicine at Memorial and Lisa DeAngelis is the first Physician in Chief. And so, although there is gender equity in medicine, there is not gender equity and leadership around the academic world. And this is a very unique situation there. Can you reflect a little bit about the significance of this and perhaps, lessons learned, particularly if you're speaking to a younger version of yourself or a young woman who's thinking about a career? What are the lessons between you and Dr. DeAngelis mean? Dr. Deborah Schrag: I'm not sure I've been at it long enough to have lessons. I'm just so grateful. So, I'm not in the generation that was a trailblazer. I'm a beneficiary. So, I've had the privilege of being trained by Dr. Jane Weeks, by Dr. Judy Garber. I, myself, had so many great mentors who were women. I would say to women, that you can have it all. You just may not be able to have it all at once. Women and men have to make choices. Can you have a lab and be a laboratory investigator? Yes. Can you do that and have a family? Yes. I think running a high-power lab and having a gigantic clinical practice and running clinical trials, I think the three-legged stool and the so-called triple threat is really, really hard. But I think it's hard for women and men. What I would also say to women is you don't have to be the boys - be yourself. I think the best advice I can give to leaders is to be authentic. Because everyone, men, women, people smell a phony and no one likes to phony. So, I think if you know how to partner, you understand that it's a team sport. I think women do that really well. So, I think being authentic, and I think women need to hear that, you don't have to emulate male role models. You have to be yourself. I would love to emulate the two of you. I have to thank both of you because the Indiana Miracle and Dave from his Vanderbilt days, Vandy, as Dave likes to call it, from his Vanderbilt days to his Texas days, like, the two of you are such incredible thought leaders and inspirational leaders in oncology, but I can't be you. The best we can be is sort of the best version of ourselves but we can be inspired by the great qualities that we see in other leaders and carry a little bit of that with us. So, I think that goes for women and for men. Dr. Pat Loehrer: Thank you! Well said, and I appreciate the thoughts. We've kind of gone through this and we're going to have to wrap it up. One of the questions that we often times ask our visitors is if there's a book that they're reading, a documentary that they're watching, a movie they're seeing, or anything you'd recommend? Dr. Deborah Schrag: That's a good question. So, yes, actually. One of the ways that I learn about leadership that I find, actually a fun way that's both relaxing and educational, is to read a biography. I love reading biographies. I'm going to name two. And these are popular books - for scholars these may not be. First really fun book is 'The Splendid and the Vile', by Erik Larson. It's a book about Winston Churchill in 1940, and how he has to try to persuade the United States to enter World War Two, but it's really about a particular year in history and Winston Churchill. Dr. Dave Johnson: It's a great book. Dr. Deborah Schrag: It's called, The Splendid and the Vile. I just learned so much about leadership from that book and the decisions that Winston Churchill makes in his bathtub. So, just read that book and think about what Winston Churchill does in his bathtub. I can't lead from my bathtub, I live in a New York City apartment, but that's one. Then more recently, I guess there's a little German theme happening here, is, The Chancellor. It's about the life of Angela Merkel. It's long, I haven't finished it yet. But it's incredible. What a story, East Germany, her leadership style, how she studies chemistry, how she rises. It's a fantastic book. It's called, The Chancellor. So, I will recommend that one. Then the last one, my beloved nephew who's like a son to me. He's about 36 years old, and he has ALS. And he's completely paralyzed. He is on a vent and he has two little kids. But he released a documentary that actually won at the Tribeca Film Festival called, Not Going Quietly, which is about a cross-country trip that he made. He's a pretty inspirational character, despite the fact that my nephew was completely locked in, he communicates only with his eyes. He is living a remarkable life. I think that documentay, I know this is a shameless plug for my nephew, but he's a pretty inspirational character. I don't necessarily agree with 100% of his policy prescriptions and recommendations. But there are lots of ways to make meaning in the world. So, that's another documentary. Dr. Pat Loehrer: That's incredible. Thank you so much for sharing that. I'm going to look it up. People think cancer is the worst thing you can get but there are worse diseases to have. Dr. Deborah Schrag: Yeah, I think this one might change your idea. And then I would also say Paul Farmer's Bending the Arc. I think for young physicians who haven't seen that movie, I would recommend Bending the Arc. Dr. Pat Loehrer: Thank you. Dr. Deborah Schrag: Thank you! It's been great to chat with you. Dr. Pat Loehrer: It's great. So, that's all the time we have for today. And I really want to thank you, Deb, for joining us and for all your insight. It's been wonderful. I also want to thank all our listeners for tuning in to Oncology, Etc. This is an ASCO Education podcast where we'll talk about just about anything and everything, if you've heard. If you have an idea for a topic or guest you'd like to see on the show or a host that you would like not to see on the show, just email us at education@asco.org. Thanks again. And Dave, I just have a riddle for you here. How do you make an octopus laugh? Dr. Dave Johnson: Show him your picture. Dr. Pat Loehrer: Ten-tickles. That's all we have for today. You guys have a good evening. Take care. Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

In part one of a two-part conversation, Drs. Patrick Loehrer and David Johnson sit down with Dr. Deborah Schrag to discuss her roles as a leader, researcher, oncologist and public health expert. The current Chair of the Department of Medicine at Memorial Sloan Kettering Cancer Center in New York, Dr. Schrag discusses the joy and passion she has found throughout her career, and more. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org. TRANSCRIPT Dr. Pat Loehrer: I'm Pat Loehrer. I'm the Director of the Center of Global Oncology and Health Equity at Indiana University. Dr. David Johnson: Yes. And hello, I'm David Johnson. I'm at UT Southwestern in Dallas, Texas. Dr. Pat Loehrer: And welcome to another version of Oncology, Etc. Dr. David Johnson: Yeah, great guest today, before we get started with our guests, though, Pat, what are you reading these days? What can you recommend to me? Dr. Pat Loehrer: Well, I'm reading Jamie Raskin's book, which is about his son and about the insurrection. It's really a wonderful read so far, particularly I think about the family nature and how much he deeply respected his son who unfortunately committed suicide. Dr. David Johnson: Right before one of the impeachment trials as I recall, right? Dr. Pat Loehrer: It was right before the January 6 insurrection. Dr. David Johnson: Yeah, terrible situation. I have a book I've been meaning to recommend for a while. It's one that I've given to all the chief residents I've worked with over the last several years. And today's guests made me think about this book. It's entitled, Osler: Inspirations from a Great Physician. It's written by Charles Bryan, who's the former Chair of Medicine at the University of South Carolina in Columbia. Dr. Pat Loehrer: You trained with Osler, didn't you? Dr. David Johnson: I was a couple of years behind him. He was my senior resident. For anyone who's an Oslerphile, it's a great book to have. But even if you're not, it's got some wonderful lessons to be learned about how to interact with one's colleagues, and a lot of information about leadership, which is why it made me think of today's guest, Dr. Deborah Schrag who we're really excited to welcome to Oncology, Etc. Dr. Schrag is the Chairman of the Department of Medicine at Memorial Sloan Kettering Cancer Center in New York. She's a highly accomplished healthcare leader, clinician-researcher, and expert in public health and population science. Deborah received her medical degree from Columbia University and completed her residency in internal medicine at Brigham and Women's. She obtained her medical oncology training at Dana-Farber in Boston and also received an MPH degree from the Harvard School of Public Health. After a brief stint on the faculty at DFCI and Brigham and Women's, she joined the division of gastrointestinal Oncology at Memorial Sloan Kettering, where she was an associate member and Associate Professor of Public Health and Medicine. In 2007, I believe it was, she returned to Dana-Farber and Brigham, where she continued her work focused on improving the delivery, quality, and effectiveness of cancer care. While there, she served as chief of the Division of Population Sciences until this past year when she returned to Memorial to chair the Department of Medicine. I also think she's the first woman to hold this position, but we'll learn about that momentarily. Deb is internationally recognized as a pioneer for her work engaging patients in reporting outcomes as a way to improve care. She has led pragmatic trials using informatics strategies to optimize patient and clinician wellbeing, efficiency and quality, and equity of care. In short, she's a true superstar, leading the department, the major department, in one of the world's foremost Cancer Institutes. Deb, welcome to Oncology, Etc. Thank you so much for accepting our invitation. This is a relatively new oncology podcast, but already, we're known for our incisive, deeply penetrating questions. So, I have a question for you to start off. Do you have any carpentry skills? Dr. Deborah Schrag: Absolutely none whatsoever, Dave. None. Dr. David Johnson: I'm disappointed. It's my understanding that Schrag is German for cross or a slant and people who build cross-legged tables. So, I was hoping, my house was destroyed recently, and I'm looking for replacement furniture, and I was hoping you might be able to help me. Dr. Deborah Schrag: I apologize. But I'm not going to be able to help. The name, you're correct, though, David, is a German name. So, my family does hail from Germany and they made malt, which is the major ingredient in beer. I'm not sure where the name comes from. But they ran malt factories and shipped malt all over to all the beer, before there were craft beer distilleries, that's what they did. Dr. Pat Loehrer: That may come in handy by the end of this podcast, by the way. Dr. Deborah Schrag: Could be. Dr. David Johnson: Well, speaking of your family, tell us a little bit about your background and where you were raised, and your family members. Dr. Deborah Schrag: Sure! I'm glad you asked that because I really have been very influenced by where I grew up. And as I think about it, experiences that go back to first grade got me where I am today. So, I am from New York City. I grew up in Manhattan in the 1970s. And as you may know, that was a pretty rough time in the history of New York, what's often referred to as the 'bad old days', although it didn't feel that way to me. But I started out attending New York City public schools. And at that time in my neighborhood on the Upper West Side of Manhattan, my first-grade class had about 45 students, and one teacher, there were about five or six of us who spoke English, and everyone else was a recent Puerto Rican immigrant. I pretty much sat in the corner and read to myself. Now I didn't stay in the public school system for long, but I saw in first grade, how things weren't fair. And I saw and felt my own privilege, acutely. And even as a little kid, I had that sense. Eventually, my parents transferred me to private school later on. And there were kids in the neighborhood who didn't have the same privileges that I did. But living in New York, you walk around, you're confronted with disparities every day. We still see it today with homelessness on the streets. At that time, there was a lot of alcoholism and the use of drugs. And they were two blocks north that were safe to walk and two blocks east that were not safe to walk. So, this really stuck with me from a very early age. As a student in summer jobs, I worked lots of interesting jobs. I started at 14 scooping ice cream at Baskin Robbins, I worked at a famous Deli in New York called Zabar's, selling coffee. Lots of interesting jobs that I worked during holidays and vacation times. But one of my first jobs was working in an organization called the Floating Hospital, which was a big old ferry boat that circumnavigated Manhattan, and it provided a summer camp. And we would take 1800 people on a boat around Manhattan every day. And my job was to do lead testing. And I learned how to stick kids, test them for lead because there were incredible amounts of lead poisoning in New York City in the early 1980s. And then we would work on tracing the kids and these were toddlers, two-year-old, three years old. There were many families who were living in homeless shelters in New York City in the early 1980s. And that was really the beginning of my interest in public health and inequities. And really the marriage of medicine and public health. That had a deep and long-lasting impression on me and really stayed with me throughout my career. That early experience, I think it propelled me into medicine and to medical school and also to marry medicine and public health. Dr. Pat Loehrer: Tell me a little bit, Deb, about your parents. Dr. Deborah Schrag: Sure! My mother was born in the United States. She was a teacher who many years later after having three children went to law school and she became a litigator. And actually, her boss was Rudolph Giuliani. My father is a child of World War II. He was a child of German Jewish parents who had to flee the Nazis. Probably the most interesting story is that my paternal grandfather was an OB-GYN. So, I am a fifth-generation physician. My paternal grandfather was an OB-GYN at Charité, which is a very famous Hospital in Berlin. He was the head of OB-GYN there in the 1930s. But he had, I think he was half Jewish, and the Gestapo asked him to leave and he had to leave. He was an expert in version, which is essentially flipping babies and the setting of placenta previa. He then left for Lebanon, where he was in the French Resistance and had a thriving OB-GYN practice in Beirut, Lebanon, during World War II. And at night, there was a curfew, and he was part of the resistance and passed secrets around from the Russians to the French, so very dramatic. My father was born in this setting, and arrived as a new immigrant to the United States in the 1940s, where it was very hard to be a child whose parents had a German accent, given the prejudice against Germans at that time, but also went to New York City public schools, had a tremendous opportunity. It's really kind of the classic New York immigrant success story. You know, arrived in the United States with the shirts on their back and managed to work their way to a better life and achieve success and good education through public education for all their offspring. I will also say that my father had a public health stint. He worked in North Carolina as an alternative to going and serving in the Vietnam War, he was in the Public Health Service. And he worked in North Carolina in the textile mills and worked on a disease called byssinosis, which is also known as the brown lung. It's an occupational health disease that affects textile mill workers. As a child, I spent many dinners, hearing about byssinosis and brown lung, and black lung. I think at an early age I really came to understand how the world wasn't fair, and how it was instilled in me early on that it was important to work to try to make things better, particularly for people who didn't have privilege. And I think when you come from an immigrant family, and you realize how much privilege has been bestowed on you, that really leaves an indelible mark. I have to say, as Chair of Medicine at MSK, it is staggering to me the proportion of faculty here at MSK, but also at Dana-Farber, where I worked previously, we have lots and lots of immigrants who've been able to accomplish just amazing things through just motivation and drive and energy and creativity. And so, I'm a big believer in how much immigrants have powered this country. Dr. Pat Loehrer: Deborah, are your parents still alive? Dr. Deborah Schrag: My parents are still alive. They're both in their early 80s. And they both still live on the Upper West Side of Manhattan. So, I'm very privileged and fortunate to have living parents. Dr. Pat Loehrer: I can imagine the pride that they have for you. Dr. David Johnson: I just want to jump in and let our listeners know that Deb mentioned Charité in Berlin. That's the home of multiple Nobel laureates that all of us would know like Ernst Chain, who was one of the individuals involved in the development of penicillin, but Paul Ehrlich, Robert Koch, Hans Krebs, and for cancer doctors, Otto Warburg, among others. So, it truly is a world-renowned institution. Dr. Deborah Schrag: Well, my paternal grandfather was famous for this technique called version, which essentially involves putting your stethoscope next to the uterus, figuring out where the placenta was, and then essentially trying to flip the baby without disrupting the placenta or causing any harm, which required incredible skills with a stethoscope because you had to appreciate, I guess, the placental vessels. I'm not aware that this skill is still in existence, it was an important skill to have in the 1930s. When, if you did a C-section, there was a high probability of endometritis. So, you could save the baby, but you would often lose mom to endometritis. Or you could save mom, but you might not save the baby. So, at that time it was a big deal, but thankfully no longer. Dr. David Johnson: This is why we call it an Oncology, Etc. Our listeners didn't know that we're gonna get OB information in this particular podcast. Dr. Deborah Schrag: Or a digression on the history of medicine. I do find that, you know, I am inspired by the generations that came before me. I think it's also true that there are many physicians who are first-generation physicians in their families and some of us are privileged to have lots of healthcare professionals and sort of feel it as a calling. Dr. David Johnson: I think of you with many, many talents. But one of the things that I think stood out to me is, many years ago, you were in the van, talking about the financial cost of health care. I remember a very influential paper you wrote in the New England Journal, talking about the cost of treating GI cancer, colon cancer in particular. But where did your interest in that particular aspect of health care begin? What was the stimulus there? I mean, obviously you had a lot of stimulus from your family. What else? Dr. Deborah Schrag: That's really interesting. This is a little bit of a history of oncology. At that time, I was an assistant professor and assistant attending in the GI oncology service, seeing lots of patients with colorectal cancer. And we were working on a clinical trial of a drug called ImClone C225. And that was the name of the protocol. And we were putting patients in that clinical trial. And you know what? This drug was working. We were getting excited and the drug was moving ahead. We looked at the Phase 1 data and we launched Phase 2. We had meetings with the research protocol nurse and the research assistants, team meetings, and I would say there were about 50 people who were aware between the GI oncologists and the nurses and all the research assistants. You guys know that it takes a village and even though the villages were smaller then and it wasn't a particularly large trial, there are many, many people involved and everyone had the sense that this drug might be working. Just for context for our younger listeners, this is back in the early aughts, and basically, the drug that we had to treat colorectal cancer was 5-FU in many different formats and Irinotecan. And that was it. Some people thought mitomycin might work a little bit, but it was so horrible that it really barely worked. But that was what we had in our bag of tricks. So, the fact that we had this ImClone drug that eventually came to be known as Cetuximab, was remarkable. So, here's what happened. It turned out that this is the drug made by the company ImClone. And there were some shenanigans, some insider trading. And one of the people caught up in insider trading, in addition to some people involved with the company itself was none other than Martha Stewart, sort of the famous homemaker who still publishes magazines to this day. And you may know that she actually did some time in federal prison as a result of insider trading on this drug. I remember being a junior attending, and all the people involved in the trial and all the cancer professionals, we all knew this was working. But everyone respected the confidentiality of the situation, of the patients, and all the integrity that goes into academic medicine. And I remain inspired by the integrity of all the professionals, the doctors, the residents. These were not affluent people. I can tell you. we were not paying research assistants a whole hunk of money. They investigated every trade made by this company. There were absolutely no shenanigans or improprieties from the hard-working folks who helped bring this drug to market. So, as this was going on, we had many patients who were not eligible for the trial who were interested in getting the trial. So, of course, we followed as this drug got FDA approved and came to market. You could check me but I believe it was February 2004, it was FDA approved. It came out with a huge price tag. It was approximately $10,000 per month. I was mad because I was taking care of regular New Yorkers at that point. I had public school teachers, I had patients on Medicare and they couldn't afford the 20% copay. Because $10,000 a month for Cetuximab, if you have a 20% copay and you're New York City, public school cafeteria worker, is not yet eligible for Medicare with a typical plan that a New York City public school system employee would have, that was $2,000 a month. And that did not work for one of my patients who is essentially what we used to call a lunch lady. I was so mad that I decided to channel that anger into writing what I think is a perspective for the New England Journal called, "The Price Tag on Progress". I wrote that piece. I know that many, many people and many of my esteemed colleagues have continued to work in that area and do research on the economics of drug pricing and there are many, many experts. I didn't stick with that. Not that it's not interesting, and not that it's not important. It's incredibly interesting and important, but I felt that the solution needed to happen in the legislature, state legislature, federal legislature. I think that this is about social policies, and we need to advocate for appropriate health insurance programs to make it possible for people to get coverage when they have catastrophic illnesses, and we need to think about the entire approach to drug pricing in this country. I still think that's important. I'm not convinced that what we need is more research on the topic. I think we need more policymaking and laws on the topic. I think we're still dealing with this. I'm sad to say that it's been nearly 20 years since I wrote that perspective. But I think it was motivated by frustration, not being able to get my patient what she needed, and many patients thereafter. And just the incongruity between some people benefiting from insider trading and all the good people who were doing the right thing. Dr. Pat Loehrer: I just want to throw in one thing if I can. Len Saltz, who's one of your partners, it was a piece of that trial that he presented at ASCO talking about ImClone C225. And ironically, it had a 22.5% response rate. And Len said, it's a bummer that ImClone didn't call it C995. Dr. Deborah Schrag: You have no idea how often we used to talk about that, joke about that in the clinic. I have another good story about that drug, which I think really illustrates something I believe and I think it's actually something that Osler said but it's also something I have to say I learned from both of you. And it has to do with listening to your patient. So, I had a patient named Matthew, who was a young man, 34 years old. He walked into my clinic with a diagnosis of diffuse metastatic colorectal cancer with multiple bilateral pulmonary metastases, which came to light when his tennis game was off. He was, at that time, an early employee of a newly started company called Google. And he was working on advertising algorithms, and Matt got the drug Cetuximab. And unfortunately, he was on it for quite some time. He was on it for about five or six months. But eventually, it was pretty clear that we were coming to the end of the road. And he and his wife planned a vacation. This was part of his end-of-life process planning. It was their fifth wedding anniversary in the Berkshires. We worked so hard to get Matt to the Berkshires to a beautiful inn, and on Saturday night, my pager goes off, and Matt cannot sit up. He's weak. And he'd been complaining of terrible fatigue for weeks, to me, and I really hadn't quite figured out why Matt was so fatigued. I mean, I just didn't understand it. And we get into this inn and I get a call from the Berkshire Medical Center, a small community hospital, 'Dr. Schrag, your patient is here. He's so weak and he can't sit up.' 'What's going on?' The ER doctor says, 'Well, he has a Chvostek sign', which is a sign of severe hypocalcemia. 'So, call me back with the calcium.' The calcium is low. Well, I think those of your listeners who are closer to medical school know that when the calcium is low, you have to check the mag. And Matt's magnesium was 0.2. And he got some magnesium in the Berkshire Medical Center. And all of a sudden, he felt great. He was able to go on and enjoy the second half of his fifth anniversary weekend at the Berkshire Inn and he came back. And I felt terrible because he'd been complaining to me of fatigue for six weeks and I hadn't checked his magnesium. I was like, 50 bilateral pulmonary metastases on chemotherapy. That's a fatigue explanation. Suffice it to say that we went on to start checking magnesium on everyone getting Cetuximab. Now mind you, the drug is FDA approved and FDA labeled at this point. So, we started checking magnesium, and we find that it was low. I start getting on the phone and calling my mentors. I called Dr. Bob Mayer, who was the head of my fellowship director and was like a revered mentor to me. 'Hey, Bob, does anyone up there in Boston have low magnesium from Cetuximab?' 'We don't check magnesium.' I said, 'But can you check?' I started calling around and that's a great example of the community of oncology. We are a community. I just started working the phones and calling friends and saying 'You guys checking magnesium for any of these folks on Cetuximab?' Suffice it to say, we figured out that their EGFR receptors in the ascending loop of Henle - so, again, back to biology and pathophysiology - the drug Cetuximab was blocking reabsorption of magnesium in the kidney, and it was Cetuximab that caused a terrible magnesium wasting. Oral magnesium did not work. You had to give it intravenously, repeatedly. And we helped eliminate fatigue for a bunch of patients. About six months later, I showed up at ASCO with these little cardboard slides and a little poster back in the corner and put up our little case series, very little. But I'm proud to say that we changed the label of Cetuximab and it's now on the label that it causes hypomagnesemia. It might be one of my more cited papers, paradoxically. But I think it's a principle that really has stuck with me, and I've tried to impart it to all the students and residents and fellows, 'Listen to your patients because - I think it comes from Osler- they're telling you something. We have to pay attention.' Again, I have never forgotten that. But really listening and trying to figure out how we can use our understanding of pathophysiology and what our patients tell us to ask questions and not just accept dogma and try to figure out what we can do. And you know, I couldn't have figured that out on my own. I happened to find a really smart nephrologist who happened to be able to sort of go to animal models and knew the right studies and the right people to talk to. Dr. David Johnson: It's one of the reasons why we are a multidisciplinary specialty. And we use the expertise of our colleagues. I think that's such a wonderful example of listening to one's patient and it really profoundly impacted our understanding of how that drug works and renal physiology, actually. That wraps up part one of our interview with Dr. Deborah Schrag, Chair of Medicine at Memorial Sloan Kettering Cancer Center. We hope you've enjoyed learning about her background and her early career. In part two of our conversation, Dr. Schrag will discuss her programmatic goals at Memorial Sloan Kettering, the importance of mentorship and leadership, and what it means to have joy in the profession of medicine, and, frankly, much more. So, please be sure to join us. As always, we want to thank you for tuning in to Oncology, Etc. an ASCO educational podcast, where we will talk about just about anything and everything. So, if you have an idea for our topic or a guest, please email us at education@asco.org. Unknown Speaker: Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Drs. David Johnson (University of Texas) and Patrick Loehrer (Indiana University) host the second half second half of their Oncology, Etc. interview with Mr. Paul Goldberg, the editor and publisher of the world-renowned publication The Cancer Letter. In part two, Mr. Goldberg talks about literary works he has developed outside of The Cancer Letter, his perspective on the Russian/Ukrainian conflict, and more. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org. TRANSCRIPT Dr. Pat Loehrer: Hi, I'm Pat Loehrer, Director of Global oncology and Health Equity at Indiana University. I'm here with David Johnson, a medical oncologist at the University of Texas Southwestern in Dallas, Texas. This is the second half of our two-part Oncology, Etc. A conversation featuring Paul Goldberg, who's the editor of the prestigious oncology publication, The Cancer Letter. While, part one focuses more closely on Mr. Goldberg's early life - his introduction to writing and ecology and his work with The Cancer Letter - in part two, we're going to learn more about the literary works of Mr. Goldberg which are developed outside of The Cancer Letter. We'll also learn about his insight into the Russian Ukrainian conflict. We'll pick the conversation back up with Dave asking Paul about the most important changes he's seen in oncology throughout his career. Dr. David Johnson: What changes in oncology have you seen that have been most impressive in your mind, apart from therapeutic advances? What other changes have taken place that you've witnessed in your role as editor of Cancer Letter that you think really made a difference? Paul Goldberg: I think there's a lot less of this kind of, I have more friends now than I've ever had before, maybe I'm just getting old and I like a lot of people. There were a lot of people that I did not like early on. For me, culturally that's a difference. I think a lot of people are thinking along the same lines. There's a language of oncology. There's an understanding of the importance of clinical trials. People are arguing about whether to randomize. It wasn't that long ago that people were wondering about whether that's even a good thing. You mentioned Rick Pazdur. I don't know if it rises to the level of being able to say that I coined the term but the language of oncology, to some extent, is Pazdur-esque because he has gotten everybody on the same wavelength, and people do understand what it takes to get a drug to develop most of the time. So, that would be my first observation. There's less to argue about the fundamentals. And also, a lot of the kids I came up with are now cancer center directors. Dr. Pat Loehrer: In one of the friendships, I think it's been really strong has been you and Otis Brawley was crucial. You guys wrote a book together. And I think part of that book, which was very interesting was the title says, First do no harm. There are a lot of things we do in medicine that we think we're doing well, but yet, by over-testing and overtreatment, we actually don't, in the long run, help the patients or help society. Tell me a little bit about that. You're not working on this project without us on the history of oncology. And so, the perspective of that and what are some of the most interesting historical stories that you know about? Paul Goldberg: I think he just at one point at one of the NCI meetings might have had something to do with NSABP, he started explaining to me, the NIH Reauthorization Act of 1993, and how women and minorities' language was bizarre in there, and the definition of minorities and definition of race. So, here's this guy who is explaining stuff to me, which I wouldn't have really slowed down to think about because journalists generally don't slow down to think about things unless you tell them to, at least I didn't at the time. And then I said, well, this guy has been explaining stuff to me and I've been explaining stuff to him occasionally. So, it's been going on and we've been talking probably, give or take, once a day for 30 years or so. That produced the book and the book was really funny, the first book with him. We were both wondering, where do we begin? And then I said, well, why don't we just begin with the older mastectomy? You know, the spontaneous mastectomy of a patient and he said, yeah, let's do that. So, it was like, I knew his story with which to begin. It was that kind of weird, but it was kind of fun. Dr. David Johnson: Whose idea was the book? Was it yours or his? Was it a joint decision? Paul Goldberg: We had been talking about that for maybe 20 years prior. And then at one point, it was very obvious because my agent even said, I think your friend and you should write a book. I think the time is now. Then I called Otis that day. But that's not a rare occasion and asked Otis to write the book and Otis said, yeah, it's time to write the book. So, we decided that we would do it. Dr. Pat Loehrer: After 20 years, you jumped on it? Paul Goldberg: Yeah, it was exactly like that. Dr. David Johnson: Paul, this is a silly question. Do you actually write or do you dictate? Paul Goldberg: I write. Dr. David Johnson: Do you manually write or do you type? Paul Goldberg: Yes, I type on the computer. I absolutely do. Dr. Pat Loehrer: What do you do, Dave? Dr. David Johnson: I actually write. I'm not a typist. I do the two-finger thing, you know? Dr. Pat Loehrer: Yeah, I write out and then I'll type, but I write with a pencil. Dr. David Johnson: Yeah, that's what I do as well. That's really old-fashioned. Paul Goldberg: The young people I work with think it's pretty hilarious that I don't type correctly. But that's just not my bottleneck. My bottleneck is thinking. It's not typing. So, I'd never really learned to type properly. Dr. David Johnson: So, you've written a lot about a wide array of different subjects. I mean, you have pointed out at the beginning, that you've written some fiction, some very successful books, it seems I came across something that you wrote on the internet. I thought it was kind of interesting, and I knew nothing about it. But you wrote a piece entitled, why every progressive should read The Good Soldier Svejk. Paul Goldberg: Yeah, that is me. Dr. David Johnson: I had no idea about The Good Soldier, Svejk. Maybe you could tell us about this. Paul Goldberg: Yeah, it's kind of the fundamentals of Eastern European humor. It's also the fundamentals of all humor. It's also the fundamentals of, I would have to say, catch 22 is really impossible without Svejk. It's basically a loosely structured novel. It's set in Prague. Svejk is the Czech national hero, kind of the Don Quixote of Prague, especially Prague. He tells old stories of, well, what it really comes down to is that he is conscripted into World War One. And he either is a complete idiot or he pretends to be a complete idiot. And that makes him a very sane person in many ways. So, it's kind of like only a madman could survive this. But the beauty of this is that we've never really learned that he is really an idiot. And actually, he does say this, I have the honor to report that I'm a complete idiot. So, his adventures are absolutely hilarious, and before he is conscripted, he catches dogs and sells them and just takes a mongrel dog and turns it into a terrier, by painting it black and chopping off half of its tail, that kind of stuff. So, my mother started reading it to me, preparing me for life in the Soviet Union before there was a chance to get out. My first reading of Svejk was totally age inappropriate. And politically somewhat inappropriate. It's not an illegal sort of book. It's allowed, which is sort of a joke in and of itself because, in a totalitarian state, a book like Svejk has bragged more dissent than Bush can, who is also... Dr. Pat Loehrer: Let me ask you this Paul, just because you brought it up and to bring it more timely to what's going on, now give us a little insight into what you think mothers and children are talking about, not only in Ukraine but also in Russia right now with this invasion that's going on? What are some of your thoughts, whatever your concerns, and just ruminate a little bit about what is in your mind? Paul Goldberg: I keep thinking about 1968 in Moscow, in August 68, when Soviet tanks rolled into Czechoslovakia. I was nine years old, but boy I just sat down and listened, I was glued to the radio, basically listening to the voice of America and others, but I didn't know a single person who really supported that. It's this deep feeling of shame and there's no way to hide that from anybody, children, or whoever, which is also right. At that time, actually, my mother was reading Svejk to me, which is a very appropriate book for 68. I think she started before that but here as an independent state and our leadership has decided to send tanks. I can tell you that in 1969, during the Hockey Championship, I routed the Czechs so much. I mean, the Czech were us, they weren't them, Americans were us too. So, I was rooting for the Americans, but the Soviets beat us. But when the Czechs won against the Russians, that was the happiest day of my life, and I was like, not quite, 9. So, it's an incredible feeling of shame and we all grew up with that. And right now, there are children all over Russia who are growing up with it. I don't know anybody who voted for Putin. I know a lot of people in Russia. Nobody I know. Maybe I never ran into anybody like that. It's just not us. It's them. So, I guess I might as well just sort of, I grew up among the Moscow intelligence act. So, if I grew up and we had a small provincial town, maybe, definitely the feeling would be very different in the provinces over. So, it's also, like, I'm listening to Zelenskyy speak and Russia and to the Russian people. His Russian is so much better than Putin's because Zelenskyy has read many books and Putin may have read one that was written under his name. These are the fat-faced idiots of the new nuclear bureaucracy. It's really shameful, really shameful. There is no difference, really, that I know of between my friends there, and my friends here. Not even in age. Actually, as part of my historical stuff, I met two of the participants in the demonstration on Red Square in 1968. And I knew them fairly well, so actually, just very recently, it's my audio archive of interviews with Soviet dissidents of that time. Say, I didn't really deliberately put together that archive, I put it together to write a book but there it was, and still is. Yeah, it hasn't changed from 1960s. It's just that there are more people, more outrage, and it's not going to go well for anybody. But Putin is one of the people for whom it's not going to go well because in Ukraine, you might be able to take Kyiv, but you're not going to be able to hold the whole of Ukraine. No way. These people are, I mean, these people my brothers culturally. Dr. David Johnson: You wrote a book entitled, "The Yid". Paul Goldberg: Yeah. Dr. David Johnson: Tell us about that. Is that from this experience that you had had? Paul Goldberg: Slightly different, I have just finished the book that's from that experience. That's the one I've just turned in. It's called the dissident and that's coming out next year. But Yid was an interesting project for me. I was a kid and in Moscow hanging out with my grandfather, and his various friends and my own friends, and they all spoke Yiddish, but they were all Red Army veterans. So, they're these old Jewish guys walking around with my grandfather, talking about what happened in 1943. Telling stories like, well, I took two machine gunners and we went through the swamp for three days. Then we found ourselves in the center of Leningrad, that kind of stuff. It was just truly amazing. So, I started thinking of a way of imagining something that Stalin actually did plan to do, which was to deport all Jews. It was a kind of a holocaust that he was planning of his own. And I thought, well, what would these guys have done? So, I wrote the comedy about Stalin's death. It begins with KGB and NKVD trying to arrest an old Jewish actor. My grandfather was a pharmacist, he was not an actor, but he did give that guy our apartment or communal flat in the center of Moscow. So, he kind of got arrested in that place. But the problem is that the arrest doesn't take place the way they usually do take place. Ths guy kills three NKVD. Dr. David Johnson: To protect his hero he does sort of almost Spider Man-like, given your… Paul Goldberg: Yeah, small swords number which he develops on stage. So, and then I actually, also weirdly, I was very lucky that part of my material is that my aunt comes from a very famous Jewish Intelligentsia family. And in fact, her grandfather started the Moscow Hebrews Theater, which became now the National Theatre of Israel. He was sort of a very major ethno-musicologist. Her maiden name is Dobrushin, and that was one of the Moscow Yiddish theater playwrights. So, I was able to kind of hear the stories of my aunt telling me the stories about having seen Solomon Mikhoels, and after his trip to America, the legendary things, and they put it all together into this novel, imagining a kind of alternative history. But really, Stalin did die when Stalin died. It's just that they changed the mechanism of his death, and it's a comedy. So, it's kind of a Yiddish comedy. Dr. David Johnson: You also wrote a book entitled, "The Chateau", but this was more contemporary, I think, right? What was the inspiration for that book, which takes place in Florida, right? Paul Goldberg: Right. It was my stab at Florida realism. Actually, what I did was, the characters are all fictional, and the protagonist is a journalist at the Washington Post, a little bit of a nebbish, not a little bit but very much a nebbish, gets fired for insubordination at the Washington Post, then goes over to try to write a book about his college roommate who dies mysteriously. So, it's kind of a murder mystery. It's a kind of Florida realism. In the end, it's kind of a kleptocracy story about condo boards, which was really in America at the time. And the timeframe is right before Trump's inauguration. So, it's like Trump supporting the Soviet Jews. There's the sort of a din of, "here it comes". And it was an interesting book to write. I don't think I ever want to write a current - and I will write a nonfiction book - but I don't want to really write anymore about something that happens now. My model for that was Turgenev it was Fathers and Sons, so I planted it in Florida and kind of played on my fantasy of what it would be if my father was not anything like my father actually is. Dr. Pat Loehrer: Before we wind up. Can I ask you a quick question? This comes from one of our viewers or one of our listeners. I remember when I was first dating, I would get really sweaty and nervous just calling up who would eventually turn out to be my wife. I would get that same feeling years later when I was calling a babysitter to see if she would go to take care of our kids. But the third point of terror is being interviewed by you and The Cancer Letter, and you would get sweaty palms and get really nervous. What advice would you have for someone who's being interviewed? Paul Goldberg: I'm not a ferocious person. I just ask questions like you just did, actually, it's very strange but I wouldn't even know how to be anything but polite. Well, there are situations where you probably wouldn't want to take my calls. But you know what those situations are. So, it's completely sort of like, not an issue. I have more friends than I have enemies by a factor of maybe 1000. It really shows, I don't think I've ever like screwed up in that way of just going after, this was the one case where I really screwed up. But this was very early, this would have been very early in my career. And now I would have just figured it out very quickly and said, oh, what the hell was I doing? But no, I mean, I have so much respect for the people who do this work and for both of you. I have so much respect for people who serve ODAC or NCAAB, or the President's Cancer Panel, and any of these incredible groups. I have so much respect for the cooperative group system for the methodology of clinical trials. I mean, you start messing with the methodology of clinical trials. Yeah, you're gonna get me on. It wouldn't be pleasant. But you would know you're doing it. Dr. David Johnson: I think we all agree that you've done a wonderful job of helping our field advance in so many ways, uncovering some things that aren't so good and helping us correct those mistakes. I personally want to thank you for that. I know Pat feels the same way. Paul Goldberg: Thank you. I think I get entirely too much credit for The Cancer Letter, but it's not really been just me for a very long time. Right now, we also have the Cancer History Project and my co-editor on that is Otis Raleigh. Then The Cancer Letter operations are run by Katie Goldberg, who also happens to be my daughter, but she is also the illustrator. Katie is the inspiration really for all the operations and she's working with Mona Mirmortazavi who's also very, very talented. On my editorial side, Matt Ong has been here for eight years. And he knows his way around oncology. Many people have dealt with him in many stories. And then there's Alice Tracy, who is an engineer, also a writer by training, and she is just a journalist with incredible talent. Then there's, of course, Alex Carolan, who is working with the Cancer History Project. She's the staff for it. And then, of course, the web designer, David Koh, and the graphics designer, Jackie Ong. It's a big crew. It takes a lot to produce The Cancer letter and it's also really a blast. Dr. David Johnson: One final question for you. We've asked all of our guests. We've talked a lot about your writings and your books, but if you read something recently that you could recommend to our listeners or perhaps a documentary that you've seen that you think is worthy of our time, what would you recommend to us and to our listeners? Paul Goldberg: Well, I'm just gonna reach for a book that's sitting in front of me right now, The Man Who Sold America. It's a story of Albert Lasker and the creation of the advertising century. It's very interesting because one of his creations was Mary Lasker, who created the National Cancer, and it took her a while to figure it out but he taught her. He was long gone by the time this was done, but without him and the mirrors that were erected, and he taught her how to erect those mirrors and how to make it happen. It's kind of a story of lies, lies, and lies, but then, human genius gets in there, the methodology gets put together, and everything starts happening. I mean, when they got started in this field, and this is not the book, but everybody would have a monoclonal antibody and everybody was laughing at people that had monoclonal antibodies, you know, immunology, yeah, right. Whom has Steve Rosenberg ever cured? Human genius stepped in. Dr. David Johnson: I just clicked on Amazon to have it sent to me. It should be here by tomorrow afternoon. Paul Goldberg: It's an interesting book about a guy with bipolar disorder, who does a bunch of weird and brilliant things. Dr. David Johnson: Paul, thank you so much for your time this afternoon. It's been a real blast to have this opportunity to chat with you. Paul Goldberg: Well, thank you. I'm sorry if I was being nonlinear. Dr. David Johnson No, we appreciate your nonlinearity. Let me take the moment now and thank our listeners for tuning in to Oncology, Etc. This is an ASCO educational podcast, where we will talk about anything and everything. If you have a suggestion for a guest, you would like us to interview, please send your suggestion to education@asco.org. Thanks again. And remember, Pat is not a Russian dissident. Dr. Pat Loehrer: Thanks, Paul. It was terrific having you, and Dave, not so much. Thank you for listening to the ASCO education podcast. To stay up to date with the latest episodes. Please click subscribe. Let us know what you think by leaving a review. For more information visit the comprehensive education center at education.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guess statements on the podcast do not express the opinions of ASCO the mention of any product service organization activity or therapy should not be construed as an ASCO endorsement.

In this episode, moderated by Dr. Alissa Thomas (University of Vermont), patient caregiver Ms. Sandra Klima, hospice and palliative medicine physicians Dr. Gregg VandeKieft (Providence Institute for Human Caring) and Dr. Frank Ferris (Ohio Health), and medical oncologist Dr. Charles Blanke (Oregon Health and Science University) exchange perspectives on medical aid in dying, including legal, ethical and practical aspects. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org. TRANSCRIPT Dr. Thomas: Hello, and welcome to the ASCO Education podcast series. My name is Dr. Thomas, and I'm a Neuro-oncologist at the University of Vermont Medical Center, and Associate Professor in the College of Medicine in the Department of Neurological Sciences in Burlington, Vermont. As today's host, I will be moderating a discussion on medical aid in dying with four guest speakers, Dr. Gregg VandeKieft, who is a Palliative Care Physician, Clinical Ethicist and Executive Medical Director at Providence Institute for Human Caring in Olympia, Washington. Dr. Charles Blanke, a Medical Oncologist and Professor of Medicine at Oregon and Health Sciences University in Portland, Oregon. Sandra Klima, who is the partner and caregiver of a patient who passed away using medical aid in dying in Vermont. And Dr. Frank Ferris, who is a hospice and palliative medicine physician, as well as executive director of Palliative Medicine Research and Education at Ohio Health in Columbus, Ohio. For consistency during this talk, we'll be using the term medical aid in dying or MAID to refer to death with dignity and physician-assisted dying. So, to begin the discussion, I'd love to hear from Sandra about your perspective as a caregiver. Can you share with us what it was like caring for your partner and what your reaction was when you learned about his wishes? Sandra Klima: Yes. Thank you. I'm glad to participate. My partner had died of glioblastoma in April of 2018. When we found out, it was pretty shocking. The very first thing he brought up was Act 39. And initially I was very surprised and uncomfortable with it because I didn't want to think about death, I wanted to think about living. And he was very quick, Rob was very quick. We made an appointment at the funeral parlor. He wanted to get everything taken care of quickly. So I was shocked that he wanted to use Act 39. I did not feel that it was, as I said, appropriate to talk about, but he explained he had a friend who had glioblastoma and she did not take that action. And she kept a diary and he said it was very difficult to read. And he did not want to go through that process that she went through. He didn't want to lose who he was. He wanted to die as himself instead of a short time later as a lesser person. And wanted the choice, and Act 39 gave that to him. And I respected and supported his decision once we talked about it. Cancer is a progressive disease and there comes a time when you will not be in control. Facing that and knowing it only goes downhill is scary. So having the option that looked out before the end phase is a blessing, and it is death with dignity, and that's how it feels to me. Dr. Thomas: Thank you so much for sharing that experience. This has been a hot topic and I'd love to hear from our panel, what are some of the common misconceptions around medical aid in dying, and how is this different from concepts like euthanasia or assisted suicide? Dr. VandeKieft: Well, for starters in the United States, all the states that allow aid in dying require the person to self administer the agent. So it's not euthanasia where somebody else administers the lethal agent. Our neighbors to the north in Canada actually do allow voluntary euthanasia and about 90% of their aid in dying individuals do it by voluntary euthanasia as opposed to self-administration. Another misconception is that it is heavily targeting the most vulnerable and disenfranchised, when in fact data from Oregon and Washington really indicate that it's mostly the well-educated, economically privileged who tend to utilize the aid and dying acts. And so there's actually been some questions in recent years about equity in rural areas and for other people who have difficulty accessing aid in dying, Dr. Blanke: I'd love to reinforce that point. So, the Oregon data suggests that 74% of participants have at least some college, and almost 99% actually have medical insurance, although getting the insurance company to actually pay for the drugs is a different issue. I'd like to also suggest that opponents of death with dignity say that it violates the Hippocratic Oath, which I do not believe it does. Death with dignity deaths make up a tiny minority of overall deaths in any of the states where it is legal, and a good chunk of patients, somewhere between 30% and 60%, get the prescription and never even take it. So, I like to say that the act fights out of its weight class. A lot of people get the power and control of having that medication, but never actually need it. Dr. Thomas: I understand there are a number of safeguards within the law to try to protect patients and help access and protect physicians. Would you be able to touch on the safeguards? Dr. Blanke: I'll start there if okay, and most of the other states have modeled their law after Oregon's. So first the patient has to make multiple requests over time. They have to demonstrate a continued interest in death with dignity, and the law has built in cooling off periods. The patients have to clearly understand what will happen if they actually take these drugs, and what happens in 99.5% of cases is they will die as a result. The patients have to put in a witnessed written request for medications, and one of the witnesses cannot be related by blood or marriage, cannot be the patient's doctor, and most importantly can't be in a patient's will. They cannot have a financial interest in the death. So I think those are very reasonable patient safeguards. Dr. VandeKieft: One exception I would call out is the state of Montana, which did not actually pass the legislation or a voter initiative to legalize aid in dying. But it was a state Supreme Court decision that said it was unconstitutional to prohibit it. So they actually don't have a regulatory framework in place, but they do offer protections to physicians. If they participate, they cannot be prosecuted. But all the other states in the US that have laws have a regulatory framework, much like Dr. Blanke just described. Dr. Thomas: That's really helpful for the legal ramifications. What are the main ethical considerations around medical aid in dying? Dr. VandeKieft: If you think of the classic ethical framework, autonomy tends to drive a lot of the conversation, that is the patient's right to self-determination. If they choose to pursue aid in dying, even if we morally disagree with the appropriateness of it, is it our position to prohibit them from following through with it? But then many others will also look at the concepts of beneficence, that is the obligation to do good for our patients, and non-maleficence, that is the obligation to not do harm for our patients. And people on both sides of the arguments will invoke those terms. People who oppose it would say the good is to prolong life. People who support it would say the good is to give people the right to choose the best quality of life and self-determination. People who oppose would say that the death, if it's self administered is actually a harm. The supporters would say the harm is making a person suffer, when in fact they have the potential to cut that suffering short on their own terms. And so those ethics discussions tend to get into it fairly significantly, particularly around the public policy and social aspects. And then finally, at least within the health system I work, we've really shifted our focus away from a lot of the high-level legal and ethical debates and into what do you do for the patients who request it, and how do we make sure that there's non abandonment, accompaniment through the end of life, and that we seek out the reasons that they asked about aid in dying in the first place, and figure out how we can best serve the concerns that raised the question? Dr. Blanke: I would love to actually strengthen that last point that Dr. V just brought up. A lot of patients use up three months of their expected six months survival barely finding me. Because what happens is they went to their primary provider, asked for death with dignity. Their physician says, "I don't do it. I don't know anybody who does. Good luck with it." This is a legal option in the state of Oregon, as well as about 11 other states. And the question as to whether or not providers have the obligation to at least refer, is a strong ethical point. A lot of the state's statutes say they can't hinder referral. They have to supply records if the patient asks for it, but I'm not aware that any of them have mandatory referral. And I think the physician is ethically obliged to offer that possibility, even if they don't want to write a prescription, which of course is totally okay. Dr. Ferris: And if I might comment, I think the other obligation here is to, for the patient, particularly with cancer, but with anybody with any diagnosis who might be choosing this pathway is to ensure that they've had very early referral for palliative care services. That all their symptoms, any issues that are causing suffering are actually being addressed. And that as you have suggested, that they are clearly accompanied by somebody without bias, who understands how to unwrap and provide counseling in all the different realms psychological, social, spiritual counseling, to make sure that they and their families or their partners are in a really good place. Everybody's comfortable with the choice. The family lives on after a situation like this, and they need to have been comfortable with that. That the choice was the appropriate one for the person, and that what we're doing is we're respecting that person's choices and they're comfortable with it. Dr. Blanke: I totally support that. The flip side of the coin is none of the states really say what to do if you are unable to offer death with dignity. They don't certainly mandate palliative care. I see a number of patients who really don't have terminal illnesses, or they have terminal illnesses that they are not expected to die within the mandatory six months. And I think we should ask ourselves, why are they seeking death with dignity? We have to ask ourselves, "Should we be referring these patients for psychiatric care?" Dr. Ferris: Well, and if I could come back and emphasize that, I think oncology broadly has frequently had late referral patterns to palliative care services. I've got story after story, I'm a radiation oncologist by background, having done palliative care for the last 35 years. Even in the last couple of weeks, students learning with me have said, "We tried to get referrals and the oncologist wouldn't refer. Is there anything wrong with having a partnership?" So, the oncologist continues to do their wonderful work, at the same time we're managing the patient's experience and that people understand all their options, of which this is one of them, and they have a legal right to that in 11 states, so that we do the best possible care for people. Dr. VandeKieft: I want to amplify your point. Dr. Ferris, if people choose aid in dying as the culmination of excellent palliative or end-of-life care, that's a very different scenario than if they're choosing it in lieu of palliative care because they don't have access. And so anybody who has access to aid in dying certainly should have access to the highest quality palliative care and hospice care and behavioral health, as Dr. Blanke pointed out, to make sure that they aren't despairing for something that could be treated more readily. Dr. Ferris: And if I could add one more point, I think there's also a palliative care evangelist who says, "Well, if you just do this a little longer, everything's going to be wonderful." Except that we haven't made a difference. We as a community need to recognize when that's the case as well. So none of us are perfect, but it's the making sure we're a really comprehensive team and able to walk with people and honor and respect their choices. Dr. Thomas: Thank you. We've spoken a lot about some of the logistics and legal and ethical aspects. I'd love to hear about what the experience is actually like. What are the barriers that patients face when they're trying to seek out medical aid in dying? We have a caregiver here who directly experienced this. How was it trying to access this and are their barriers either individually or systemically? Sandra Klima: When Rob made his choice, we obviously had to go to the physicians and do the two interviews and get the approvals and wait the days in between and sign all the forms. But eventually we got to go pick up this medicine. But there was one pharmacy that had the medicine. We went, made a drive there. It was far from where we were. So we went over there. We had to plan it to be when there was a physician there who would give us the medicine. So that kind of struck me as strange. So you had to schedule everything and then you get there, and I don't know if it was my paranoia or what, but you feel like everyone's looking at you from behind the counter like, "Oh, you are the people coming to get that medicine?" And it was really just a little uncomfortable. And you feel like you were almost doing something illegal. So that is the pressure I felt during that process about that. The only other piece is once you start this process in motion, we had the hospice people and the palliative care people contact us. We had several meetings with them. We talked about it with our cancer counselor, so I was very comfortable. And most importantly, Rob was comfortable to get the medicine that he would have to take and have it with him. It gave him peace of mind. It gave him freedom to enjoy his life. Dr. Blanke: I'll add a few practical matters. The states that have death with dignity mandate that the patient takes it through their GI tract. That usually involves swallowing. We have a number of patients who are unable to swallow, or they have GI obstruction. They're allowed to take the medication through their rectum, although that eliminates a lot of the dignity from death with dignity. But we are not allowed to use intravenous formulations. Even if the patient self-administers. We also have patients and patients with Lou Gehrig's disease or amyotrophic lateral sclerosis make up about 11% of death with dignity users. Many of those patients do not have the use of their limbs. I had one young lady who was nearly completely paralyzed. She could move her head and she could move the pinky of one hand. And I spent somewhere north of four hours simply figuring out how she could fulfill the law by self administering a drug. Finally we put in an NG and she was able to press a syringe plunger while I held a syringe, legal in Oregon, with that single pinky. I think the law is incredibly discriminatory against people with disabilities in the interest allegedly of protecting them. Next issue is we talked about the written request, which I do think offers safeguards, but sometimes it's hard. If patients want confidentiality, which the law allegedly is interested in, they may not want their neighbor to know that they're going to do this and they may not have somebody who is able to sign the form. Finally, we have talked a little bit about finding a participating provider. That continues to be an absolutely huge barrier, particularly because it's not just one provider, it's a prescribing physician and a consulting physician. They have to find two doctors, and if they're in say a Catholic health system or they're at the VA, sometimes it's nearly impossible for them. Dr. VandeKieft: Loop back to Miss Klima's comment about the peace of mind that her partner experienced, and note that sometimes even just the conversation provides that. I've had numerous patients who brought the topic up, and they weren't actually asking for requests. They were just seeking information or in one instance, trying to let her family know how badly she was suffering and bringing this up was a way of demonstrating that to them. But I had a patient with ALS who brought the question up. The fact that I accepted it, spoke back to her in a respectful and supportive manner, provided her some relief. But then when the doctors from End of Life Washington, the advocacy group who can help provide support to people in the home, came out and visited her, she responded that it alleviated her anxiety and her depression, didn't resolve them, but eased them. And that also she learned that she didn't have to act as early as she thought she would have on her own. And so I kind of jokingly said, "So meeting with doctors may have actually prolonged your life." And she laughed and said, "You know, doctor, it did, because I would've done it earlier if I hadn't met with them." Dr. Ferris: If I can speak to what you just said back in the era of HIV and AIDS, when we had very little, I cared for more than 1,000 people out in the community. And I would say more than 60% of them asked me that question of when they got to a spot of intractable suffering, when I hastened their death. And of course that was illegal in those days. But what I was clearly able to do, is talk about palliative sedation for them, to be clear I would look after them, clear I would look after their families. And just as you have suggested, I think one of the huge issues is, "I have an option. I have an alternative here. Somebody is going to look after me. And if I've decided, if I'm going to go to medical aid in dying, if I'm going to go the palliative route, I don't have to experience the horrible part that I don't want to experience." We need to talk about both of these openly with people, and be clear that they and their families will be accompanied in whatever the process and as you've suggested, without judgment, maintaining confidentiality. These are super important issues for people. I think about my own personal future, these things loom. I think it is people with lots of thoughts about what might happen, maybe a bit too much knowledge, who worry about the intractable nature of suffering, whatever it is, whether it's psychological, physical, spiritual. It's being able to accompany people appropriately and respect their choices. Dr. Thomas: Right. Dr. Blanke: So I'd like to add one more practical detail. We talked a little bit about finding providers and how difficult that is. And if you think about the challenge of finding two providers in Portland, you have to multiply that by about 100 to find any providers in Klamath Falls or Eastern Oregon. The good news is telemedicine has made our lives and the lives of our patients quite a bit easier. Dr. Thomas: As I listen to the conversation, I'd be curious about your thoughts about health equity issues around this. You've alluded to the fact that somebody who has physical or neurologic disability may have challenges depending on where you live. It may be challenging to access. Are there other populations of patients where you worry about health equity and access to medical aid in dying? Dr. Blanke: Well, I can comment that most of the patients find me or my colleagues who provide this through web searches. So, they have to have access to computers, which is not necessarily all that easy for all the rural residents of Oregon. Even though I told you that 99% of patients have insurance, we also mentioned that getting the insurance company to pay for the drug is very, very difficult. Hospice almost never wants to pay for it for the usual hospice- related reasons, and the drugs are about $700 in Oregon. That is a hindrance to a lot of my patients. Dr. VandeKieft: I think being mindful of historic disenfranchised communities, people of color, Native Americans, that the healthcare system has not always treated fairly historically, and they have reasons to be suspect at times. Now this is something that usually they will seek us out as opposed to the healthcare system promoting it, but just being sensitive to the fact that we're doing something that could be perceived as problematic by communities who have historically been mistreated by the health system as well as other systems. Dr. Thomas: I'd like to just have a better understanding of residency and the law. I think that there is written into most of these laws, you have to be a resident of the state where medical aid in dying is available. But what does that mean to be a resident, and how do states define that? Dr. Blanke: So for us in Oregon, it's not like the classic situation where you have to demonstrate that you have a driver's license or you have to produce a gas bill in your name. The statute basically allows the prescriber to define residency in their own mind. Dr. Thomas: What advice would you give to oncologists and other physicians who might have patients approach with questions about this? How do you talk with patients about this matter? Dr. VandeKieft: The very first thing I respond to is... This is a very important question. I appreciate that you brought it up and that you have the [inaudible 00:20:35] and trust in me to raise the topic. But before I get into the details, I'd like to learn more about what led you to ask me about it. Would that be okay? And even that last phrase, would that be okay as intentional and that by asking permission, I'm making sure that they have agency, and demonstrating respect to them. But that approach has made a huge difference in that I have learned on many occasions, people have no intent of actually proceeding with it. As I mentioned earlier, they may simply be asking for information. One gentleman, his response was, "Well, my buddies told me about it, and I didn't even know that was a law. And when I started to explain it, he said, oh, that sounds too much like suicide. I would never do that. And then the other woman, I referenced, she went through it and then looked at me and said, "Doctor, I would never do it.", and looked at her daughter and son-in-law, "I just want my family to know how badly I'm suffering." And so starting with that open-ended question is really crucial because if we make assumptions and if we start projecting our own biases onto them, we may completely miss what they're looking for and the opportunity to provide them the best services that we could. Dr. Blanke: If I merely mention that this is an option, the patient is going to think that I'm recommending it, and I certainly don't see it that way. It's just one of many options. If we offer chemotherapy, we are not mandating that particular drug or even suggesting they get chemotherapy at all. Certainly, with the exception of palliative care, I recommend they seek that out, that I really want them to seek it out. But I think it's incumbent on the providers if they see a patient with a terminal illness to list this among the many options that are possible for the patient living in Oregon or those other 10 states. I know that's controversial. Dr. Ferris: Well, I really want to highlight what you just said, Gregg, about the process of inquiry. To me, everybody practicing oncology, everybody practicing medicine needs to be able to model exactly the way you opened when asking any significant question, including prognosis, "When am I going to die? What about this therapy?" Because what we know, many of the times, patients aren't asking what the words specifically say, they're calling out their suffering and how can we help them? Or they've got a plan, they've got something they want to do. So that was beautiful modeling, Gregg. Dr. VandeKieft: Dr. Blanke, he used that example of people not hearing. And one of the cases that I still struggle with a little bit, I work in a Catholic health system, so I'm not a participating physician. And we're really counseled that we shouldn't be the one to bring it up. And I had an elderly woman. I was doing a hospice home visit and she asked me how long I thought she had. And unfortunately, Dr. Ferris, I didn't think to ask her what led her to ask me the question on that occasion. And I probably should have, because I told her my prognosis and she looked at me with a profound look of disappointment and said, "I don't think I can suffer that much longer." And a couple of days later, she died very unexpectedly. She took an intentional overdose and the fact that I didn't inform her of the option of aid in dying still haunts me that I may have failed her. Dr. Thomas: Thank you so much for sharing that. Ms. Klima, we've heard a lot from the experts. Is there advice you'd give patient to patient or caregiver to caregiver about what to ask your physicians? Sandra Klima: You need to ask as many questions as you want and have the doctor answer you truthfully. I think when a patient is asking a doctor a question, they're asking the doctor, "What are my options?" I'm going to assume you're going to give me all the options. I'm not going to assume you're not going to tell me the options you don't like, because I want to know what are my options. I'm the one who's suffering. I'm the one who will have to make a choice. And I can tell you the choice Rob made, to use Act 39 in Vermont, was a blessing for us. It was a peaceful death that I cannot overemphasize. It was the right decision to make. It was for his decision, but it was the right decision to make. And I think if a physician would not have told us of that option, I would be in the same situation that you felt, Gregg, where the lady took it upon herself. Because you thought through it, you had a plan, it was planned. It was a nice wind up to an ending. And I think that physicians owe it to their patients to tell them all of the options available and let the patient make a choice. I also think physicians owe it to the patient to be clear what the end phase of their life will be. Because it's not roses. If they don't do this, they have to live through that end phase, which sometimes it's horrific. And I think they need to have a clear understanding of what's to come and a clean list of all the options. And I think that should just be required, and personal choice of a physician is not on the table. Dr. Ferris: So it's important that we explain all the options, I completely agree, that are available within the context of the law. And certainly in the Americas, in Europe, and I've been in many other countries where palliative sedation is one of those therapeutic options. Where the patients can have amnesia, the family can be well looked after. We need to describe all the available options that are within the law, in the jurisdiction in which we live. I completely agree. Dr. Blanke: And I'll add that that actually also applies to some of the patients who want death with dignity, are suffering horribly but don't actually qualify because they have a chronic illness expected to live too long. I just saw a patient last week and we actually talked about VCED, the voluntary cessation of eating and drinking, which is something that many, many people fear, including providers, but if done properly is fantastic. She used VCED. She passed away. She died two days later and her family could not have been more thankful. Sandra Klima: I'll chime in on that because the comparison between my father dying and Rob dying, it really just has an impression on my mind. My father did not have a diagnosis of X amount of months to live, but my father had chronic problems and he was suffering. And the death that I watched him go through and was with him for, was nothing like Rob's death. It wasn't peaceful. It haunts me today. It haunts me. My father should have been a candidate, but he wasn't. What was the point of living four more months in this miserable state? Dr. Thomas: You know, it dawns on me that this is a very different kind of death. It is not suicide legally or medically. It's a different process than natural death from a terminal illness. And it's not even possible in every state or every country. And I imagine it is very different for the people who are left behind, for family members and caregivers to process this kind of death and bereavement after their loved one passes. Can you comment, Sandra, on how medical aid in dying affects the caregivers and affects the family and how you can prepare for bereavement and support in bereavement? Sandra Klima: I felt that this death was anticipated, and my bereavement, the part that bothered me about Rob's end of life, was that I was unprepared for how quickly the decision was made. The decision was made quickly because he started getting paralyzed again on the side of his body. And he decided, "Today's the day." And it was three or four hours later, and it took me by surprise at how quickly the decision was going to be made. That's the only part I regret was I didn't have a strong enough plan about what was going to happen when that decision was made. That probably needs to be emphasized because you can plan all you want when it's not going to happen. But at the moment it happens, it's like a fire drill. You got to go through and get all those things lined up. And I can tell you, I felt worse for my father's death than I did for Rob's death. So even though it's a different kind of death, it was a peaceful death with dignity. Dr. Blanke: In terms of the bereavement, I have seen all sorts of responses from patients' families initially, from those who could not be more supportive. Sometimes they even seem to want it more than the patient does, to those who actively oppose it. But in my experience, which now numbers about 205, the families are almost always on board at the end when they see how much the patient has been suffering and how much peace the actual control over the patient's life and death gives them. I always offer after the patient is gone to the family to contact me whether it's a week later or a month later, or a year later, if they have questions about the process, if they need any help in referrals. It's never happened a single time. Dr. VandeKieft: I think back to the landmark article that Tim Quill published in the early 1990s about his patient, Diane, and how he highlighted that she ended up committing suicide. And there's kind of a shame, it's done in the shadows, and that when you have aid in dying as an option that can be brought out into a planned open manner in the way that Ms Klima is describing with her partner. And then also with the bereavement and the partners, I think we need to listen once again. I just had a case yesterday that somebody was telling me of a gentleman who got the prescription for aid in dying, but ended up not taking it and died of "natural causes." His wife told the bereavement counselor afterwards, "That was such a relief because I was struggling terribly with the spiritual aspects of this. And I would've really had a hard time had he gone through with it." She had not shared that with her husband or anyone else because she wanted to be so supportive of him. And it was only by the bereavement counselor, listening and opening up that she could really understand, "What are the true struggles that this family is going through and how can I meet their needs?" Dr. Ferris: If I can comment, it doesn't matter whether people have chosen medical aid in dying. When people die, there's a loss for anybody who's a survivor. People can be comfortable with the process that occurred or not. They can perceive suffering or not. The loss leads to changes. And what we know is the transitions through the loss period that we call bereavement for different people are profound in different ways. And what we need to make sure is that people are connected with services. It's why with every patient I care for, whatever therapy provided, I do participate in ventilator withdrawal. I participate in palliative sedation. I've done this all my career. I make sure they're in the hospice system, in the United States, which provides people with 13 months bereavement support or more, because if a death occurs in a hospital without hospice care, then the patient gets a decedent phone call from the chaplain, if they're lucky, or they're lucky enough to have a physician like Dr. Blanke who says call me. Most people don't make themselves available and you're out at sea. And we know that the suffering of a bereavement can lead to incapacitance, people depressed, not functional, people even get illnesses in the process. So there's a huge cost to society for not addressing this issue carefully. It's about the preparation, and what I try to do is get the bereavement conversation going before the person dies, so that we're talking about it and integrating it. Sandra Klima: Right, I agree. Dr. Thomas: Thank you all so much for this conversation. Thank you, Sandra Klima and Dr. VandeKieft and Dr. Blanke and Dr. Ferris. I think this was such an important conversation. Talking about death can be very difficult and I just appreciate the openness and sensitivity and your willingness to share these experiences. Thank you to all of our listeners. We appreciate you tuning into this episode of ASCO Education podcast. Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization activity or therapy should not be construed as an ASCO endorsement.

Drs. David Johnson (University of Texas) and Patrick Loehrer (Indiana University) host the first of two Oncology, Etc. episodes featuring Mr. Paul Goldberg, book author, investigative reporter, and Editor and Publisher of The Cancer Letter. In part one, Mr. Goldberg reflects on his two main interests − human rights and cancer, and his early career as a journalist and novelist. If you liked this episode, please subscribe. Learn more at education.asco.org, or email us at education@asco.org. TRANSCRIPT Dr. Pat Loehrer: Hi I'm Pat Loehrer, I'm the director of the Center for Global Oncology and Health Equity here at Indiana University. Dr. David Johnson: Hello, my name is David Johnson. I'm at UT Southwestern in Dallas, Texas. And we've got a great guest today and we're excited about the interview. Dr. Pat Loehrer: Yeah, it's very timely too, I think it's terrific. Before we go on to that, are there any recent books that you've read that you want to recommend? Dr. David Johnson: Yeah, actually, I do. It's somewhat related to our topic today. I just finished a book entitled, Presumed Guilty by Erwin Chemerinsky, who's the Dean of the Law School at the University of California, Berkeley. It's actually recommended to me by a lawyer friend. I think most of our audience knows the fourth, fifth, and sixth amendments to the Constitution are the ones that provide protection for people accused of crimes. And I think most of us are familiar with the Warren Court in the 50s and 60s, which seemed to be a very, quote-unquote liberal court that provided many of the protections that you see on TV shows, police TV shows de including the Miranda protections, but as Chemerinsky points out in his book, that really is a historical aberration, that the Supreme Court from its founding really right through today is then on the opposite side of the fence in terms of protection to the accused can many landmark rulings over the last several years, including Terry versus Ohio and City of Los Angeles vs. Ryan, have actually provided protection and sanction stop in frisk activities, limited suits against police departments to institute reform, and even provided some benefit for the use of so-called lethal chokeholds. Smaller than I think, in light of what's happened over the last several months, really provided some insight, to me at least, about how the Supreme Court looks at the protection of the accused. I thought it was a very interesting book to read. And Chemerinsky does a great job of explaining these landmark cases in a way that simpleton like myself can understand them. So, I recommend it to you. I think you'd enjoy it. Dr. Pat Loehrer: Yeah, there's a book called "Just Mercy" by Bryan Stevenson. I'm not sure if you've ever had a chance to read that. It is an outstanding read. They made a movie out of it but if you get a chance to read the book, it's really terrific. Again, it talks a lot about the inequities in terms of how our court systems have prosecuted people of color for minor crimes compared to people that are in the majority here. But I think both of those would be great reads. Dr. David Johnson: Yeah, I haven't read it, but I will. Dr. Pat Loehrer: Yeah, it's terrific. Go for it. Going ahead in getting started, it's our great pleasure to have Mr. Paul Goldberg join us today. Anyone in oncology knows him. He is the editor of the Cancer Letter. Interestingly, he was born in Moscow and emigrated here to the United States at the age of 14, where he went to Virginia. He got his undergraduate degree at Duke in economics. And shortly thereafter, he worked in a newspaper in Reston, Virginia, where he met his future wife. I think from there, they went to the Wichita Eagle in Kansas. His wife was actually the daughter of the founder of what was to become the Cancer Letter, Jerry Boyd. He rose to associate editor and finally editor in 1994, and publisher and editor about a decade ago. The Cancer Letter is the go-to newspaper for us in oncology. Over 200 institutions subscribe. There's not a cancer center director in the country that does not look forward every week. One is to see if it's in there, you hope it isn't. And then if it is, you hope that there are really some platitudes in there about how wonderful you are, and then you can go ahead and read the rest of the article. The New York Times once said that everybody who's anybody in the cancer field reads this newsletter. He's won a number of awards, including the Washington DC professional chapter of the Society of Professional Dermatologists and some Gerald Loeb awards. His investigative work has uncovered some extraordinary events, including the Duke scandal with genomics, the ImClone scandal, as well as some of the workings of SIPRAD and MD Anderson, and I think he is really a flashlight that looks in the dark corners of our world, but also is there also to cheer on some of the accomplishments in oncology, and he knows Brawley and have written a book together, How We Do Harm. They're also doing the history of oncology together. He's a novelist. He's a nonfiction writer, and he's an extraordinary individual. And I think we're really looking forward to spending a few minutes with you here, Paul, thank you for joining us. Paul Goldberg: Thank you for inviting me. This is really a pleasure to spend some time with friends. Dr. Pat Loehrer: Well, by the time this gets aired, hopefully, the crisis in Ukraine will be over. But just last week, the Russians invaded Ukraine, and I think it's very timely to hear more about this and the fact that you grew up in Moscow and Russia. Tell us a little bit about your early life, your upbringing, your family background, and what prompted your family to immigrate here to the United States? Paul Goldberg: Well, it suddenly became possible and it was something that my father wanted to do. So, we just sort of ran as soon as we could, and certainly, I had kind of a fascinating time that I've been chewing on for many years as a novelist. In fact, they've just turned it into a novel, which will be published not this coming summer, but the following summer, it's called The Dissident. It's about the Soviet human rights movement and it's set in 1976. By then I was here, actually. But it's kind of like material that found me and really weirdly, it's also why I'm in oncology, where I'm covering oncology. My material kind of found me when I was in college, my drinking friend's mother, Ludmila Alexeiava was one of the founders of the Moscow Helsinki group. Interestingly, also, my first book was about the Moscow Helsinki watch group, which is really the beginning of human rights monitoring, which is really a staple, let's say the beginning of the NGOs. It's a staple of world order to rely on people within the country that it's being written about covering themselves in a way. It's kind of like free social media. And then, of course, enhanced greatly by social media. That was my beginning, but what was also interesting is that being a writer, and I really wanted to be a novelist, I did not want to then write nonfiction, but the material was so good that I had to jump in. Then I also had to, like, temporarily at least, make a living doing something else. So, my former father-in-law, my dad at the time, my father-in-law, now my late former father-in-law, terrific guy, Jerry Boyd, just hired me to do some work for him. I started some stuff and he used to brag that he's the only guy who's ever made money off son-in-law. Dr. David Johnson: But Paul, I'd be really interested to know, where did your interest in cancer begin? Was it with the Cancer Letter or had there been some interest prior to that? Paul Goldberg: Well, when I was working for the Wichita Eagle, I kind of got interested, I always gravitated towards stories about things like insurance, for example, the value of life, anything that had to do with these sorts of very complicated philosophical questions. That was kind of the beginning of my interest. That's why I didn't say, oh, no, this is too wonky. I don't want to have anything to do with this. Also, when people realize, it's always interesting, there's a fair amount of that in oncology. So, I was trying to find that, and just the complexity and the characters. You'll run into characters in oncology that you kind of wish to run into because you can have half an hour-long conversations or two-hour-long conversations or three-hour-long conversations with a lot of folks without really getting off-topic. I mean, I get a lot of criticism from the kids and my staff telling me that I'm nonlinear in my thinking, but that's linear in this field. It's also once you get into questions like ethics, that's really the fundamentals of oncology, and that's also the fundamentals of my other interest, which is human rights. It's also the artistic potential of this field is incredible. It just kind of grew on me but basically, it all began as a kind of a way to make up for unevenness in cash flow from writing books. And then it just became so great. If you want, I can tell you what the actual events were that made me just say, this is my field. Dr. David Johnson: Yeah, I'd love to hear that, tell us. Paul Goldberg: Two early ones. One of them was the beginning of the National Breast Cancer Coalition. I was initially taking a nap at the Senate hearing. I was editing a manuscript that was around 1992. I was editing a manuscript that got a little bit boring for me to just sort of listen to most things and I just fell asleep. And then I heard Fran Visco's voice booming through and I had no idea who Fran Visco was, nobody had any idea who Fran Visco was. He was giving her "Men in Suits" speech, which is like the beginning of the patient's movement in breast cancer. I kind of woke up and I pushed the button on my tape recorder and I got it. It was just unbelievably cool. I said, okay, so conversations that they had in the kitchens, wherever, there are these people who are talking about setting up a public movement, because there was never a public movement really of patients in oncology. For the most part, it just felt a little bit boring. I started working around the corners of oncology around 1985-86, really, 5 or 6 years later, I was writing other books. And I was bored a little bit because there were a bunch of white guys making decisions behind closed doors. They stopped smoking a few years before, but there were still white guys behind closed doors. Suddenly, this was something completely different. This was a public movement. And I could recognize the public movement because I'd seen them, I'd written about them, I did a story about them. So, there was that. Then came up about that very same time, really roughly the same time came the NSABP scandal. The Cancer Letter was writing fairly short stories. Now, it has been around since 1973. So, there's just this incredibly rigorous device for monitoring the history of oncology, you can just crack the thing. But it was different because Jerry didn't write 5000-word stories. Sometimes he did but mostly he didn't. But I can't really express myself briefly, I kind of have to go, and so, I started realizing that I could just return to this story over and over and over till I understood it, until everybody else got, so because of drilling, probably I must have written 40 stories on NSABP, maybe more. I don't know, over the years, maybe I'd written, but they just sort of said to me, hey, this is a field that's now politicized in a way that kind of sustains journalism. Controversy is unbelievably cool with this because here's a group of patients who are saying, we don't really care about NIH funding, in this case, but we care about just funding for breast cancer, and we want to do it our way. Let's do it through DOD. That was an amazing story to cover. Then there's the story of Bernie Fisher, who was like the great man of oncology, getting kind of pulled through the wringer on this thing, and it was awesome. Then another thing started happening. I started going to the meetings, mostly I loved ODAC. I always loved ODAC and I still love ODAC. I haven't missed an ODAC for maybe 40 years or something. And the same goes of course, for NCAB. Basically, here is a discussion as a spectator sport. Oh, wow! I kind of got passionate about this whole thing. Like, covering ODAC like Dave Johnson's ODAC was hilarious. It was a comedy show. Basically, Dave was doing some really cool stuff. Really good material, not really quotable because the jokes were a little loud. Schilsky was hilarious in the ODAC. Raghavan was really funny on ODAC. And then there was Sledge. It was also very, very funny. So, there was this sort of a discussion of this very complicated stuff that I just started quoting. I think I must have quoted Dave's joke. I think you learned from your grandfather, a box turtle on top of a fencepost didn't get there by accident. Dr. David Johnson: It's correct. Paul Goldberg: Yeah, it became an obsession to just follow the characters. Dr. Pat Loehrer: But by the way, Paul, we did interview Rick Pazdur a short time ago, and Rick did not say that Dave was funny. I just want to let you know. There was no comment about that at all. So, there's just another side to this story. Paul Goldberg: Well, the funniest bit was when Derek Raghavan once asked, we need a translator here for southern English, why does it need a box turtle on a fence and it gets there by accident? I don't think Dave explained that that time, but I have to look at my story because I would just get into these digressions of this. I think that was also where Rich Schilsky invented the term, toxic placebo. Dr. David Johnson: Yes, we had a study, we had to review that showed, frankly, that the placebo was actually better in some ways than the actual alleged, like the drug but with a lot of side effects. So, Paul, you've been in the midst of a lot of really interesting stories, some would say controversial ones. ImClone, Pat mentioned earlier, the Duke scandal, where do you get your information? Without divulging. Paul Goldberg: Well, some of them I can't really divulge. But some of them I can. The beauty of the internet now is that people can come up with an email address and send me stuff and I can actually communicate with them, and I don't even have to protect my source because I have no idea who my source is. There was one of these stories you've mentioned, I'm not going to say which one where I could just sort of dial in the question. Like, I could just email this person whose nickname could be Mickey Mouse. I mean, I think that was Mickey Mouse. So, I can just send the question to Mickey Mouse, what happened at XYZ? I'd like to see a picture of XYZ, and then Mickey Mouse would send me something. Dr. Pat Loehrer: This is like all the president's men? Paul Goldberg: It's a lot like that. It's much easier because you don't have to count back or whatever and hang up, although I've done that it's kind of funny. Yeah, sometimes things show up anonymously. Dr. Pat Loehrer: Well, that concludes part one of our intriguing interview with the cancer letter Editor Paul Goldberg. Stay tuned for part two of this conversation, where we'll learn more about the literary works of Mr. Goldberg, who's developed these works outside of the Cancer Letter. We'll see and hear about his incredibly important insight into the Russian Ukrainian conflict and much more. Thank you to all our listeners for tuning into Oncology, Etc. This is an ASCO education podcast where we will talk just about anything and everything. If you have an idea for a topic or a guest you'd like to see on the show, please email us at education@asco.org. Thank you for listening to the ASCO education podcast. To stay up to date with the latest episodes. Please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education that asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO the mention of any product service organization activity or therapy should not be construed as an ASCO endorsement.

In the second of our two-part interview, Oncology, Etc. hosts Drs. Patrick Loehrer (Indiana University) and David Johnson (University of Texas) continue their conversation with two physician astronauts. Hear the incredible stories of Drs. Robert L. Satcher (MD Anderson), Ellen Baker (MD Anderson), and their lives on and off this planet. If you liked this episode, please subscribe. Learn more at education.asco.org, or email us at education@asco.org. TRANSCRIPT David Johnson (Dave): I'm Dave Johnson at UT Southwestern Medical Center in Dallas, Texas. I'm here with Pat Loehrer, my good friend who also happens to be the Director of Global oncology and Health Equity at Indiana University. Welcome back to Oncology, Etc. And part two of our conversation with Dr. Ellen Baker and Dr. Robert Satcher. Dr. Baker and Satcher are former NASA astronauts now practicing in Indiana Cancer Center in Houston. In Episode One, we learned about their time at NASA and some of their spaceflight adventures. In this episode, we will learn more about their post-NASA activities. We will rejoin the conversation with Pat asking Dr. Baker, how her work in space informed what she does now. Patrick Loehrer (Pat): I know Ellen, you do work with Project ECHO, which is doing work globally. Tell us a little bit about that if you could. Ellen Baker: You know NASA seems a million lenses away now. I sort of vaguely remember my flights which were a long time ago, more than 25 years now, but seems like yesterday. But you learn a set of skills that are transferable, I think. You come into NASA with some skills that are transferable and you leave with those. We did a lot of work with international partners, particularly in the 90s with the Russians. And I now do a lot of work with international colleagues, particularly in Africa, Central, and South America. I think that's one of my transferable skills, perhaps from NASA. And I don't know, Bobby, it's thinking on your feet and being adaptable and not getting flustered and compartmentalizing, and quite honestly, a lot of those are skills I think you develop in medicine as well. So, there are a lot of similarities and I think a lot of benefits flow in both directions. Dave: Could you elaborate a little bit on Project ECHO that you're involved in? What sorts of things are you doing with Project Echo? Ellen Baker: Project ECHO is very simple, it's a video conference where you connect specialists generally at academic institutions with medical providers in rural and underserved communities where perhaps specialists are not available. And the intent is to meet on a regular basis and provide assistance and support and patient care. So, providers in isolated or rural communities or underserved communities can care for their patients locally and patients then don't have to be referred to a tertiary care center, often very far away at great cost, etc. It was designed by a gastroenterologist at The University of New Mexico, Sanjeev Arora, who started the ECHO program, it stands for "Extension for Community Health Care Outcomes. In New Mexico, it was at a university in Albuquerque, there were maybe 30,000 patients around New Mexico who had hepatitis C, and were not being treated except perhaps in his clinic. And he partnered with about 21 providers in the community around the state and gave them the support they needed to be able to provide care for patients with hepatitis C, locally. This was back when the treatment was quite toxic. A lot of primary care providers didn't feel comfortable delivering this sort of care. That was sort of the beginning of ECHO, and it's since been applied to many different disciplines. At MD Anderson, we have, I don't know, I think maybe 13 Different ECHO programs for cancer prevention. That would be cervical cancer prevention, tobacco treatment, melanoma detection, also for treatment, primarily with partners who are international. We worked a lot with partners in Mozambique for the treatment of chronological cancers, breast cancers, and hematologic cancers, survivorship, palliative care, and even health care policy. So, that's sort of the ECHO in a nutshell, and we use it quite a bit at MD Anderson, but we're just one of the hundreds of different institutions that use the ECHO model for this. Pat: What I get from you, Ellen, though, is a sense of telemedicine and teamwork and collaboration, which is a lesson that you have to have, I think, as an astronaut to be able to do that. And Dr. Satcher, your extent and your thoughts now, how has that experience as an astronaut informed your current work? Robert Satcher: A lot of the skills are transferable. You come in with skills like medical training that you use and build upon when you become an astronaut. And then once you leave If you come back to the medical profession, there are a lot of skills that transferred to that field too. I see what I do is surgery, it's sort of an activity, which has a beginning and an end similar to spaceflight. And operationally, a lot of the skills that we learned as astronauts actually do transfer very well to doing surgeries. Now, one of the things that were more recently brought over is just the whole idea of a pre-brief and a debrief, which we do for surgeries now and that wasn't the case when I was training back in medical school. So, it's sort of a recent adaptation. But while I was at NASA, I would often think about that. Now, this actually would work really well, when doing surgeries, because it would help improve the process and actually make sure that you're making the best use of resources, people, etc, which they do a very good job of training you as an astronaut. The telemedicine aspect of being an astronaut and taking care of people that way, we finally are doing that at MD Anderson, reluctant adapters in the cancer world to using technology sometimes like that, although in the ER, we use a lot of technology, I think there's still this notion that there needs to be a real face to face connection between doctor and patient, very strongly rooted in the cancer world, for obvious reasons, in the past, being diagnosed with cancer, and certain types of cancer, certainly, was just amounted to a death sentence, because there weren't good ways of taking care of people. But now with advances and what we've been able to do, the outlook for cancer patients is much better now than it's ever been and continuously improving. And the pandemic is really the thing that forced this change in the cancer world and I was actually part of the effort introducing video visits at MD Anderson, which is part of something that it's going to be doing moving forward. Fortunately, the advantages of it are kind of obvious. You don't have to come into the institution for everything. It basically allows continuity of care and it potentially allows you to reach more people. That's something that makes cancer care more equitable, which is something that needs to happen similar to how becoming an astronaut needed to be more equitable. So, a lot of these kinds of things do carry over. The other aspect of training at NASA, which I think I can relate a lot to, was actually when I did the spacewalks and being focused on getting some specific tasks done. It felt the most like doing surgery and we were actually doing some repairs on the robotic arm because it was very technical, using these specialized instruments and having to be very careful. Dave: How do you keep from spinning off in space by using one of those ratchet tools? Like they put tires on NASA? Do you have to use something like that? Robert Satcher: Well, they thought of all of these things, of course. You have all of the foot restraints, other ways of stabilizing yourself. The foot restraint is one of the main ways you also have a restraint that's sort of like a, how do you describe it, it's like… Pat: A tether? Robert Satcher: There's the tether to keep you from floating away. But it's a restraint that's mounted on your belt, essentially. And it's sort of a screw mechanism that makes it flexible, then you can attach it to a rail or whatnot. And then you rigidize it by screwing in the opposite direction, which is a very clever device but it helps you to keep from spinning as you say. Dave: So, both of you have really gotten into global health in your own separate ways, I suppose. And maybe this seems obvious, but did your experiences looking back at Earth have any influence, or were you interested long before you began your NASA careers? Maybe we should start with Ellen. Ellen Baker: I think I was interested before my NASA career. I was actually one of the only members of my medical school class who did a rotation abroad, back when almost nobody did rotations abroad as a fourth-year med student, and I like to say, well, I kind of got distracted by this NASA thing. And after I finished with that, I came back to medicine and sort of rekindled my interest in global health. Dave: And Robert, what about you? Robert Satcher: Yeah, I did too. We traveled. When I was growing up, we spent six months in Uganda. That piqued my interest in traveling and then when I was in medical school, the rotation in Gabon as part of the Schweitzer fellowship, and then when I was in residency too, I did several trips and a couple of attendings in orthopedic surgery when I was doing these trips to South America. And that's when I did those, and, in fact, continued when I was a faculty member at Northwestern, doing some additional trips to under-resourced countries. So, that's been sort of my interest. Pat: Thank you for your work. It's incredible. We have a couple of questions. I wanted to talk for another couple of hours, but we weren't able to do that. Dave and I talked about books. What I do want to know from you is what is your favorite movie about space that you think is the most accurate one and maybe perhaps the best book or any other recent book that you've read? How about you first, Robie? Robert Satcher: I don't get any answer for the book because I haven't read a lot of Space books, but for the movie. 2001 Stanley Kubrick. Dave: Absolutely. Robert Satcher: At the time, they did that really well. And that was before I became an astronaut. When I go back and look at it now. I still think, yeah, just very intelligent. Obviously, it's a very thrilling movie too. Pat: I'm not saying that I'm old, but I remember in high school and grade school reading 1984 as a futuristic novel, and 2001 came out as futuristic and now it just blows your way that it's 40 and 50 years ago, that happened. Ellen, how about you? Ellen Baker: I have to say there are a lot of space movies out there that I don't like. I'm not a fan of space movies, where there are vehicles exploding and getting lost, and I find it a little bit offensive when the laws of physics are ignored. So, I would say there are some really good documentaries out there. And the real thing, I think, is at least as exciting as Hollywood. So, there are a couple of really good documentaries that are actually current right now. And in terms of Hollywood, I would say the Martian was pretty good and it was a bit classic in the astronaut office. I think they did try to obey most of the laws of physics. And there were one or two folks in the astronaut office who we thought could definitely be the Martian. Pat: That's a great book. It has the best opening line of any book ever written, which I am not going to repeat here, but if you're curious about it, pick up the book and just read that first line there, it says it all. Dave: Another question, we'd like to ask our guests, and we'll start this time with you, Ellen. If you could speak to your younger self, knowing what you know today, what advice would you give yourself at the beginning of your medical career that you didn't know then but you know now? Ellen Baker: I think when you're 25, you think you have all the time in the world. And as I got older, there was so much more I wanted to do in medicine and perhaps I would have focused a little bit more, and I wasted a lot of time. I had a lot of fun. But what seems the older I get, the more I've got to cram into the time that I have left. And maybe that's just life, that would be it, I think. Dave: I think that's an important point. I often tell residents and my colleagues that you can lose a lot of things and regain them, but you can't lose time and regain it. So, use it wisely. Robert, what would you tell your younger self? Rober Satcher: I'd probably say there's no such thing really as perfection that that shouldn't be something that you obsess with. Over the years, I've learned that and I saw an article recently about a surgeon talking about good enough is good enough and the enemy of good is better. I think that has a lot of practical ramifications in terms of how one should wisely spend their time. So, I would emphasize that to my younger self. Dave: So, thank you for that. I think both bits of advice are very helpful. Well, that's really all the time we have for today. We could go on, I'm sure for several more hours. I want to thank both Dr. Baker and Dr. Satcher for their participation in an incredible conversation. I also want to thank our listeners for tuning in on Oncology, Etc. This is an ASCO educational podcast where we'll talk just about anything. If you have an idea for a topic or a guest, please send us an email at asco.org. Pat, before we sign off, do you know why an astronaut would be a good spokesperson for the COVID vaccine? Pat: No, I don't, Dave. Dave: Come on! You got to know that they like booster shots. Pat: That's good. Dave: Alright guys, thanks a lot. Thank you for listening to the ASCO education podcast. To stay up to date with the latest episodes. Please click subscribe bribe? Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education that asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product service organization, activity, or therapy should not be construed as an ESCO endorsement.

In the second of this two-part ASCO Education Podcast episode, Drs. Stephen Berns (University of Vermont), Tyler Johnson (Stanford Medicine), and Katie Stowers (Oregon Health & Science University) continue their discussion about what it takes to deliver serious news to people with cancer effectively and compassionately. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org. TRANSCRIPT [MUSIC PLAYING] STEVE BURNS: Hello, and welcome to the second part of ASCO's Education Podcast focused on clinician-patient communication in the context of delivering serious news to patients and families. My name is Steve Burns. I'm an internist, hospice, and palliative care physician and associate professor of medicine at the University of Vermont College of Medicine. Once again, I'm joined by Katie Stowers, a hospice and palliative care physician and assistant professor of medicine at the Oregon Health Science University, and Tyler Johnson, a medical oncologist and clinical assistant professor of medicine at Stanford University. In our previous episode, we spoke about what constitutes serious news, the best modalities for delivering serious news particularly in the wake of COVID, who might be the best person to deliver it, and the importance of the care team as a whole. We left off on the question, how do we prepare for delivering serious news? Let's continue the conversation. [MUSIC PLAYING] TYLER JOHNSON: Katie was talking about how we need to be realistic about the way that a conversation is going to impact us in addition to the way that it's going to impact the patient. And one thing that I have realized is that a headline, for those who maybe haven't had evals of training, is just a concise summary statement of sort of the big picture of what's going on, just like buying a newspaper article. And what I have recognized is that oftentimes, I have this almost visceral reaction against giving a headline. And if I drill down just a little bit, what I find is I don't want to give the headline because then I'm really going to have to say things the way that they are, right? If I give a five minute disquisition on creatinine and edema and chemotherapy, immunotherapy, therapeutic options and whatever, right? Then, I can just like talk a cloud around things and never actually say what it is that I'm trying to say, which then gives me the advantage of feeling like I said it, but actually sort of knowing that I never actually said it, right? And so I think the thing that the headline does is it forces me to say the thing. And then once the thing is out in the open, then we can talk about, if necessary and appropriate, some of the other nuances and whatever. But all of that is to say that often, the greatest barrier to doing that is an unwillingness to be real with myself about the information that I'm really trying to convey. KATIE STOWERS: I think this is another really great opportunity where when partners go in together, it's easier to get into the moment if you get the opportunity. Someone with a little bit of accountability, but also somebody to help you. Maybe you're able to get out the facts and they're able to tie-in the meaning. Or you end up going bigger than your headline and they're able to say, I think what you were trying to say was dah-dah-dah-dah-dah, and help really get back to that core. STEVE BURNS: It does say that we all, before we share serious news, making sure whoever you're going in with, you're on the same page. And having a pre-meeting is so important. And what I often do with my pre-meetings is I come up with the headline as the group, right? So we're all clear about what is that headline so that when we go in, we can, in some ways, also hold each other accountable for that headline. KATIE STOWERS: I think also, a little bit of who's going to say it too. Like, is that something that you feel comfortable saying, or would it be easier for somebody else to say? Are there parts of it, and then parts of it that I can do, I think, can be really helpful. TYLER JOHNSON: Yeah. It's funny, because sometimes, even though I'm pretty tuned into these things and I try really hard to do them well, I still find that there are times as a medical oncologist when the palliative care doctor who is unfailingly ever so nice and gracious about it, ends up being like the real human translator for my medical leads. So I, like, say some word cloud. And then the palliative care doctor, like Katie just said, is like, if I can say that what Dr. Johnson was trying to say right there is something in normal human English speak. And then, as soon as they do that, I'm like, oh. But that can actually be really helpful. And again, I think it's obviously not meant to slight me. It's not meant as an affront, right? It's just sometimes, it's just kind of hard to quite get there, right, and to quite say the thing. And sometimes, having someone to help. Like, you get 80% of the way there, and then having somebody else get the other 20% is really, really meaningful. And it also, in a strange way, kind of allows us to share the emotional burden a little bit, right? So that it doesn't feel like, oh my gosh, this is just me saying this thing. There's something about having other members of the team there to kind of hold your arms up as you're doing that that's really meaningful. KATIE STOWERS: I worry that part of this conversation is saying like, oh. Some people are really good at this. Some people aren't. I don't think that this is a palliative care physician's good the whole time. I think this is a normal human experience. This just happened to me. This week in clinic where my patient was like, you just told me like a five minute story of things I already know. And I still don't know any more information. And I was like, oh, that wasn't really clear at all, was it? So I mean, I think it's when our nerves pop up. When we are uncertain or unclear about what it is that we want to say or just really nervous about doing it, like, I think this is our normal human default to go back to beating around the bush. But it definitely, as Steve mentioned, is a skill that we can learn and continue to practice. And it's also really helpful to have somebody there who can hold your feet to the fire and help you in the moment. STEVE BURNS: Katie, I'm so glad you mentioned that. I just think about even for us as palliative care physicians, who do serious illness conversations all the time, catching ourselves doing some things because we are being affected by the conversation and our well-being. I remember a couple of weeks ago, how hard it was for me to say dying and death. And I know. I've been teaching my learners say the D word. It's OK. It's direct. It's straightforward. And then all of a sudden, I was in the middle of the conversation and I noticed I was struggling saying death. And so again, just to say we are human, that these conversations affect us. And having team support is so helpful in the moment. Because the chaplain who I was with said, what we're saying is we're worried that she's dying. And I was like, oh thank god. She said it. TYLER JOHNSON: And the other thing too, right, is that I think it's helpful in a sense to recognize that the difficulty with giving a headline or with saying death or dying or whatever is an impulse borne of human compassion. I mean, it's not because we're bad people. It's because we have good hearts and because short of maybe clergy members, there's really nobody else in the way that human ecosystems are set up that does this, right? It's just a hard thing to do. And recognizing that it's hard and recognizing that we ourselves are having a hard time with it, is not some failing of doctoring. I would say that actually, this is one of those weird instances where having that consistent struggle, that should be a tension that should define part of how we doctor. Because if the tension goes away, that's actually more worrisome than if the tension continues to be there, though we have to find productive ways to engage with it. STEVE BURNS: Yeah. We did a study in 2016, the Vermont Hospice Study, and similar to actually, what Cambia Health Foundation found, why people don't engage in serious illness conversations. And one of the biggest reasons was taking away hope or hurting people's feelings and in causing emotional distress. We also know with the literature that most patients, up to like 90%, 95%, want to know the truth because it helps them better make decisions. And I think we can deliver prognosis in a compassionate way. And I think practicing that in the kind and caring way that's person-centered, asking them, what do you know? Is it all right if we talk about this right now? Delivering in a headline and responding to emotion can help make that a more compassionate conversation. Although it still doesn't take away the human feeling that I'm worried I'm going to hurt someone in this conversation. TYLER JOHNSON: Almost always in my experience, patients who have metastatic disease, or for some other reason, disease that is known from the get-go to be incurable, in one of our first discussions, they will ask some version of the question of how long do I have, or what are things going to look like going down the road? There's good evidence to demonstrate, and it has also been my personal experience, that we're really bad at answering that question at the time of diagnosis, right? Because we don't know anything about the biology of the tumor, the response of chemotherapy, what the molecular markers are. There's a whole host of things that just make it so we almost always cannot answer the question accurately even if we try. And so what I will usually do is I will tell patients, I'll say, when they ask some version of that question, I'll say, look. I need you to know that, first of all, I can't answer that question right now. I'm not obfuscating. It's just, I would be lying if I gave you an answer because we just don't know. But I want to let you know that what is true is that I can usually tell when things are starting to go in the wrong direction. And unless you ask me specifically to do otherwise, I promise you, the patient, that as soon as I recognize that things are heading in a direction that I'm concerned about, I will tell you that in so many words so that you understand what I'm talking about. And then we will have a discussion about where to go from there. And then, when we get to that point, whether it's six weeks later or six months later, or sometimes six years later, I will say-- because I do this with all my patients-- I'll say, do you remember when I made you that promise way back when or a few months ago, whatever it is? And then I'll say, I hope that I'm wrong here. But I'm concerned that we may now be in that place. And I want to tell you why, and then I want to talk about where to go from there. Because that then situates this difficult discussion in the context of this relationship of trust that we've been building over however long I've known the patient. And I have found that that provides a trusting context within which to have the more difficult conversation that has been really helpful. STEVE BURNS: Noticing the time, I'm curious, how does the task of delivering bad news affect your own well-being? TYLER JOHNSON: Just to remind people, we said this before, but I just think it's important to recognize that this being a heavy thing is normal. And recognizing that is normal and that it really is-- I mean, there's some degree to which you can do this well and that will lighten the burden to some degree. But you have to make sure that you're filling your own reservoir, right? You can't pour empathy out of an empty reservoir. And so I think you have to make sure that you're filling that in whatever the ways are that you do. KATIE STOWERS: I just think I was thinking about that too, Steve. One other thing that I wanted to build off of, this fear and this worry that we bring to these conversations, that I'm going to send them into a tailspin of depression. Or I'm going to take away all of their hope. I think there is the other part of this that I get to see as a palliative care physician, which is the high degrees of distress that often come from not knowing this information, that's really helpful in preparing and planning for the future and almost this sense of relief. Even when it's unfavorable, even when it's not what they wanted to hear, there's a relief in knowing and being able to do something with it. So that limbo and uncertainty. the idea that something terrible is out there or they can't prepare for it can be really distressing. And so to some degree, we're helping to heal by being able to move into some planning. STEVE BURNS: Yeah, I totally agree that it's such an important thing to minimize the stress of uncertainty. And the other piece that I think about is these are really sacred moments where we can really connect with our patients, share the news, find out how they're doing with it, and then find out what really matters in their lives. I think that really helps be my north star when it comes to continuing the care that I'll provide for them in their families. TYLER JOHNSON: Yeah. You know, there's a really harrowing, in some ways, but beautiful moment. And many of you will probably have read the book Just Mercy, which is written by this lawyer who's fighting for justice, particularly racial justice, for people who have been unfairly treated by the justice system in the deep South. And there's this moment towards the end of the book where a person who he had been fighting for who was on death row has just finally been executed. And he goes home and sort of just collapses crying. And then he writes really beautifully about how this moment of sort of shared vulnerability, where he kind of recognized that the reason that this was so hard was because even though he was vulnerable and broken in different ways than the person who had just been executed, it was still sort of a shared sense of vulnerability. It was what made his work hard, but also what made his work beautiful. And I think that in a similar fashion, when we have these really difficult discussions, I think that while there is a real moral weight and difficulty to it, there is also just as you said, they also end up being some of the most meaningful, memorable, and beautiful moments. STEVE BURNS: As a clinician, what have you learned over the years regarding communication with patients that may help others navigate scenarios where they can deliver serious news? I was just on service with a trainee. The team was delivering serious news. It was serious news around lung cancer. And the team's like, this patient's just not getting it. And we tried to explain it over and over again. And they're not getting it. And then my trainee went in and attempted and said, yes. Here's your diagnosis. We're concerned it's incurable. And you likely will die in the next year or so. And the patient said, no. I'll be fine. So we hypothesized before going in the room with me, like, what it would be. And what it came out is maybe it's not they're not understanding it. Maybe it's emotion. So we went back in. And sure enough, my trainee did wonderful and responded to emotion and said. It must be really hard hearing this news. And the patient immediately got sad and said, I'm really scared. And we unpacked that a little bit. And when we left the room, he said to me, yeah. That was emotion. He totally gets it. He's just upset. And so I just want to reiterate the idea, sometimes, it's not that they're not understanding it. It's that it's a lot to process. And there's a lot of feelings behind it. KATIE STOWERS: Building on that, one of the things that I see happen a lot around emotion is the health system is not set for people to process and to come to terms with these hugely life things and life-altering things. There's not time for people to process what this means for their life to term and process that emotion. And we're constantly pushing. And sometimes it almost could feel like badgering, really trying to get a decision to come where, with some degree of autonomy and some degree of time, allowing them to really process. People, a lot of times, get to where they need to go. But it's a process of really being able to deal with. STEVE BURNS: Yeah. TYLER JOHNSON: Yeah, the only thing that I will add is that these conversations, when they need to happen, work best when I have been mindful of laying the groundwork for the conversation over the entire arc of the illness. Rather than thinking of, oh, this is the thing that I do right when someone is getting close to dying. Because if you've never laid the groundwork and then you try to have the discussion, then when the person is really, really sick and in the hospital or whatever, of course, there's still a better and a worse way to do that. But even the best conversation if it's that isolated incident, in my experience, is nowhere near as good as if we have been transparent and building trust and building a sort of a shared vocabulary with the patient over the course of the illness. So that then, when they get to having to have quote, "the discussion" unquote, it becomes just one part of this longer chain rather than an isolated happening. And that really gets to what I was saying earlier about the promise that I make my patients when they first ask that sort of big picture question. That even though I'm not in a good place to talk about it right then, that I promise them that when it comes time, I will talk with them about that with candor. That makes an enormous amount of difference. I know I had a trainee who was with me one time who was a continuity fellow with me and had heard me make that promise to a number of patients and the first time he was with that same patient when it came time to have that discussion. And I said, well, you remember that promise that I made the first time I met you? And he could, for the first time, see all of the dots connect over the arc of the illness. It was like, whoa. Like, there's just really this power that comes. But you have to have been building it piece by piece over time. STEVE BURNS: I think both of you are highlighting for me two reminders that I want to keep in mind every day when I'm delivering serious news. One is sort of having an agenda but being flexible with my agenda. And I remember during my training, one of my mentors said, keep your agenda out the door. Don't force your agenda on the patient, as Katie mentioned. And yet, have a plan and still go in with that plan. The other piece that Tyler, you're reminding me of, is the importance of the arc of the conversation and how continuity. Because we build off of conversations from visit to visit. And yet, sometimes, someone else is taking over for us or they end up in a hospital or they end up in a nursing home. And it reminds me how important documentation is to convey what happened in that encounter. What was said, what was the headline that was shared, how did the patient respond, and then what was the plan. And far too often, we usually just write the results of the conversation. TYLER JOHNSON: Yeah. One last thing that I want to put a specific plug in that I have found to be enormously important, I think all of us would agree that amidst all the conversations that we might have as part of taking care of a patient, this is the one where shared decision-making matters the most. And yet, if you ask most people, even experienced doctors, how do you engage in shared decision-making around this kind of question? That's really tricky, right? Because I think what often ends up happening is that we either default to being very prescriptive where we go in and say, well, you should do this or shouldn't do this. Or we default to being waiters with the menu. Like, well. OK, so would you like some intubation on the side of CPR? And so, I think that both of those models are equally problematic and that the tool, the specific tool that has helped me really learn about how to do shared decision-making and even provides the specific words, is what's called the Serious Illness Conversation Guide from the Ariadne group at Harvard, which is the group founded by Atul Gawande and his colleagues. And I think that that gives a very brief script which, I mean, you can literally almost just read. You can get a little card that you can carry in your pocket or whatever. And it gives-- and the entire conversation in most cases, takes maybe 10 or 12 minutes. But it gives you the point-by-point things to say and really allows you to meaningfully engage in shared decision-making so that you spend the first half of the conversation listening to the patient's priorities and values, and then the last maybe third of the conversation, using that to make meaningful recommendations. And so again, it's called the Serious Illness Conversation Guide. And I would really recommend to listeners that they look it up. STEVE BURNS: That's a really great segue to what training and resources are there for clinicians and oncology trainees to improve their communication skills. The three resources that I can think about are Vital Talk, the Serious Illness Conversation Program out of Harvard and Ariadne Labs, and then they have a rich program which is from the American Academy of Communication of Health Care. All three are different ways of approaching communication skills training. I always think about the Serious Illness Conversation Programs about raising the floor to make sure that we hit the basics. And then Vital Talk is if you want to flex your muscles or flex your skills when it comes to how do I respond to really intense emotion, or if someone's avoiding the conversation, what do I do? They train with raising the ceiling or their goals to raise the ceiling. And Vital Talk actually came out of oncology conversations first with OncoTalk almost 20 years ago. And really thinking about not didactic-based, but practice and skills-based training. And I certainly have found it rewarding and life-changing for me, where I could actually label the things that I do every day, give myself some feedback, and then teach my trainees. TYLER JOHNSON: And I will just add, as a medical oncologist who has both taken the Vital Talk course and now is trained and teaching Vital Talk courses, that this is not just for palliative care doctors. And I think that it is particularly-- I mean, you may not have the interest or passion to want to become a Vital Talk trainer, which is understandable if you're a medical oncologist, either a busy practice or a heavy research portfolio. But it's just to say that they offer 1 and 2 and various iterations of courses, depending on how intensely you want to study these things. But it's just to say that the skills that they teach are concrete. This is not some sort of head in the clouds theoretical exercise. I mean, they're taught very concrete skills that you can wake up the next morning and employ you in your practice. And that I think to a point that is often counterintuitive to us, I think that we are almost afraid, as oncologists, to know about this because we think, oh my gosh. I didn't have time to engage in these long discussions. There's no way. But my experience has actually been what this does at the end, is it actually makes you more efficient. I know that seems counterintuitive, but we spend so much time sort of beating around the bush around this stuff that we actually end up making ourselves take longer. And having really concrete skills for how to have these discussions can actually make your practice more efficient for things that otherwise can really eat up a lot of time. KATIE STOWERS: I do a lot of teaching in Vital Talk incentives. It sounds like both of you do as well. But the piece of feedback that I hear from trainees that come take courses-- and I do a lot with oncologists and oncology fellows as well-- is oh, these are the things that I've seen in conversations at work that I never had a name for. Like, you're putting a name on something that I've seen. And maybe I've done a couple of times, but I didn't know that I was doing it this way. And especially for my colleagues who are practicing providers who teach others, they really love having a name and a framework for being able to teach these skills to others. It's not some magic fairy dust that you either have or you don't. It's actually, here's a skill that I can pass on to you and you can practice. And I can watch for, and we can have some feedback about. And I have seen that being a really enjoyable part of doing this framework. We have that, right, for almost every other part of medicine. But because communication is something that's so innate and personal, that hasn't always been the case around communication. And so I really love that about Vital Talk, that they've taken these pieces and put names on them. Because this is how you give communication clearly, information clearly, is the headline. This is how you show someone that you care about them. These are empathic statements. And that's something that we can use as a third language when we're going into team meetings together or when we're teaching a trainee. STEVE BURNS: It's one of the most important skills that we do every day, and probably the most important procedure that we do on a regular basis in all of our fields. TYLER JOHNSON: And I think you can tell from the way that the three of us have discussed delivering a headline during this podcast, that this is not like a thing that we learned seven years ago and then just sort of left in a drawer somewhere, right? Like, this is something that we're actively thinking about as we actually take care of patients every day, which is to say that it really is very applicable. STEVE BURNS: I feel like that's the time for today. This has been a really great conversation. Thanks so much for both of your insights and participation in this episode of the ASCO Educational Podcast. KATIE STOWERS: Thanks for inviting us. It's been great to be here. TYLER JOHNSON: Thanks so much. It's been a pleasure. [MUSIC PLAYING] SPEAKER 1: Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at Education.ASCO.org. SPEAKER 2: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

In part one of a two-part conversation, Oncology, Etc. hosts Patrick Loehrer (Indiana University) and David Johnson (University of Texas) have a blast speaking with two physician astronauts. Hear the incredible stories of Drs. Robert L. Satcher (MD Anderson), Ellen Baker (MD Anderson), and their lives on and off this planet. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org. TRANSCRIPT Patrick Loehrer: Hi, I'm Patrick Loehrer. I'm Director of Global Oncology and Health Equities at Indiana University. Dave Johnson: My name's Dave Johnson. I'm at UT Southwestern in Dallas. Patrick, we're excited to be back for another segment of ASCO's Educational Podcast, Oncology, Etc. We have two very special guests today, Drs. Ellen Baker and Robert Satcher, oncologist and former astronauts. So I predict this will be an out of this world segment. Patrick Loehrer: It's starting out pretty slow right now, with that one. Thank you though. Dave Johnson: Well, listen, this should be a great segment. But before we get started, do you have a favorite astronaut book? Patrick Loehrer: Well, the one I read this summer was called American Moonshot by Douglas Brinkley, and it basically took the story of John F. Kennedy and how the space race happened from 1960 and actually earlier than that, into getting onto the moon. It was really, I thought very extraordinary. Dave Johnson: So, I haven't read that yet. My favorite would be Rocket Boys by Homer Hickam. I thought that was a fantastic book about his life growing up in West Virginia and ultimately, becoming a NASA engineer and rocket scientist. So that was really great. Patrick Loehrer: I read that several years ago after you recommended it. They made a movie out of that. Dave Johnson: Yeah, I think October Sky was the name of the movie. Yeah. >Patrick Loehrer: Yeah, it's a terrific book. Dave Johnson: Well, why don't we introduce our guests? You want to start with Dr. Baker? Patrick Loehrer: Oh, sure. It's my pleasure to introduce Dr. Ellen Baker. I have known Ellen over the years through interactions in global oncology. She was born in Fayetteville, North Carolina, graduated from Bayside High School in New York, got a bachelor of arts degree in geology from the State University at Buffalo. A doctorate in medicine for Cornell, masters in public health at UT Public Health, and then trained in internal medicine at UT San Antonio. And during her residency, she decided to join in the NASA program as a medical officer. And it was actually, she did a residency around the same time I did, and I remember the space call for astronauts at that time. She was selected as an astronaut in may of 1984, had a variety of jobs. She's logged more than 680 hours in space and has been a mission specialist. She retired from NASA in 2011 and is Director of the MD Anderson project, Echo Program in which he does projects in rural Texas, as well as Zambia, Mozambique, in Central and South America. It's such a great pleasure to have you here today, Ellen. Dr. Ellen Baker: Thank you, Patrick. Dave Johnson: Our other guest is Dr. Robert Satcher, currently an Associate Professor in the Department of Orthopedic Oncology Division of Surgery at MD Anderson, as well. Dr. Satcher grew up in Hampton, Virginia. He's the son of a university professor and English teacher, so I'm sure they made him do all of his homework. He received a bachelor degree, as well as a PhD in chemical engineering from the Massachusetts Institute of Technology and received his MD degree from Harvard. By the way Patrick, Dr. Satcher enrolled at MIT at age 16 and graduated at the top of his class. Later, we'll find out what you were doing at age 16? Patrick Loehrer: I do have to interject that I was a mechanical engineer at Purdue, and it's like being in high school compared to chemical engineers. Dave Johnson: Yeah, there's a hierarchy in the engineering world for sure. Dr. Satcher's medical degree was followed by internship and residency in orthopedic surgery at the University of California, San Francisco. In addition, he did a post doc research fellowship again at MIT and University of California, Berkeley. And completed a fellowship in muscular skeletal oncology at the University of Florida, before joining the faculty at Northwestern in Chicago. You guys have a lot of connections it seems? Not satisfied with that massive amount of education and training, Dr. Satcher went on to NASA to train as an astronaut, culminating in a flight aboard the space shuttle Atlantis in November of 2009. Apparently, he got a little bored cooped up in the shuttle because he took a couple of space walks, which I'd like to know more about. In fact, I read on NASA's website that he did some lubricating on one of his walks. I'm not sure what that's about, but I assume there's not a lot of gas stations in space. I also read that he repaired one of the robotic arms, which seems perfect appropriate for an orthopedic surgeon. You'll have to tell us more. Anyway, while these achievements would be enough for most people, it only begins to scratch the surface of the many accomplishments of Dr. Satcher's career to date. I really can't cover it all, but our audience should know that Dr. Satcher's has been involved in a number of community activities, as well, ranging from his involvement in Big Brother for Youths at Risk, counseling program, to serving as a lay minister in his church. He's also undertaken a number of medical mission trips to underserved areas in countries, such as Nicaragua, Venezuela, Nigeria, and Gabon, where he once served as a Schweitzer fellow at the Albert Schweitzer Hospital in Lambaréné. Dr. Satcher, welcome to Oncology, Etc., we very much appreciate your joining us. Dr. Robert Satcher: Thanks Dave. Glad to be here. Dave Johnson: Perhaps I'll start by asking the two of you, if you could give us just a little bit about your background, other than what we've stated and what got you interested in medicine and how you got interested in space? Dr. Baker, maybe we'll start with you? Dr. Ellen Baker: I've always been interested in space. I was a child of the '60s, and I think one of the very memorable parts of the '60s was the US Space Program. It was a fairly tumultuous decade in the US, I think otherwise, and the space program was really literally a shining star. However, there were no girls in the space program at that time. Right? There were no girl astronauts and so I thought about it, but it didn't seem like it was even possible. I come from a family of medical people. My mother was a nurse, my father was a doctor, my brother is a doctor, and so that had a lot of influence, I think, in my choosing to go into medicine. And in fact, my brother is an oncologist and though I am actually not an oncologist, I've been hanging around with him long enough that some people think I'm an oncologist. So I think that's what got me pointed in that direction. Dave Johnson: Your brother is Larry Schulman, by the way, right? Humanitarian of the Year Award from ASCO, a couple years ago. Dr. Ellen Baker: It is, yes, and he is a great humanitarian. I was actually at my last year of medical school when I saw a little article in the New York Times that NASA was selecting new astronauts and women and minorities were urged to apply. And I kind of filed that away and went off to do my medicine residency and at the end of my residency, I applied to work for NASA as a physician. And that's how I got to Houston and to Johnson Space Center. Dave Johnson: Dr. Satcher, what about yourself? Dr. Robert Satcher: I got interested in space and being an astronaut when I was a kid too, and I was watching astronauts land on the moon. And I was sitting there listening what Ellen was saying and yeah, it was a time where all the astronauts were of course, white males and I didn't see myself there walking on the moon, but I knew it was something that I would really like to do, but didn't really see a way either, at the time. So it really was with the shuttle era that women, people from underrepresented groups finally had the opportunity to become astronauts. And right around the same time too, was when I was starting as an undergraduate at MIT and had the good fortune of meeting Ron McNair, who got his PhD from MIT. And that was the first time I ever saw someone who looked like me, who was an astronaut and that planted the seed that maybe I could do that one day. I also come from, as you mentioned, a family that values education and we've got a number of physicians in our family. Most famously my uncle, Dr. David Satcher, who was Surgeon General of the Clinton Administration. And I always remember, this is a funny story I like to tell if he's listening. When I was going around getting advice on whether or not I should stick with medicine or think about applying to become an astronaut, he advised me just to stick with medicine. So didn't take his advice, this is the one time I didn't, but I did take his advice, in terms of going to medical school. And I wound up applying to become an astronaut, right actually, before the Columbia accident and so they actually paused taking astronauts for a number of years. And in those years, actually that's when I went to Northwestern and was on faculty there. So they opened it up again and that's when I submitted my application and I was in Chicago and was selected from there. Dave Johnson: There's a number of questions that spill off from that. You guys may know David Wolf, who's an astronaut, who's from Indiana University. I had him in my clinic when he was a medical student and as I always do, I basically say, "What do you want to do when you grow up?" And he said, "I want to be an astronaut." And I just smiled and I don't think I ever went back in the room with him, I just figured, "This guy is a flake, what's going on with him?" And I think he's logged more space miles than just about anybody, he's an incredible human being. And again, if he's listening, you're terrific. David. Patrick Loehrer: I just have to ask this as a boyhood thing, because I did contemplate being an astronaut because I was an engineer and MD just like you were Ellen and so were you Bobby. But it hit me, one is, you have not to be afraid of heights, I think. And then, you have to be willing to go around in a circle a thousand times a minute and not throw up. But in the training there, did any of that stuff bother you or was this no big deal? Dr. Ellen Baker: That sounds a little like Hollywood and not so much like the real thing, actually. In the early days of the space program, they did put astronauts in rotating chairs. I'm not exactly sure why? But we don't do that anymore. I would say that the training is rigorous, but it's not unreasonable. I don't know what you think, Bobby? It's fairly predictable. And I will put a little shout out for Purdue, which maybe has one of the highest number of astronauts of any university outside the military academies. I don't know if that's true now, but 10 or 15 years ago, we just had a large number of engineers from Purdue who were in the astronaut office. Dr. Robert Satcher: I agree, the training is not quite how it's portrayed sometimes in the media. The question I get asked from my doctor friends a lot, "I guess you can't be claustrophobic going into space because you're in the space capsule." And that really does deter a significant number of people, probably more than myself or Ellen appreciate because I'm always surprised when I get that question. Dave Johnson: But I'm 100% sure I couldn't be an astronaut if claustrophobia is an issue because I can't stand to be in an elevator. Dr. Ellen Baker: Let me step back a little, I don't want anybody to get discouraged. But you'd be surprised at how many pilots have a fear of heights if they're not encased in an airplane. So fear of heights is not necessarily something that you might worry about if you're an astronaut. And I disagree with you Bobby, I don't think space vehicles are claustrophobic. It's not like being in a submarine, which I would find very claustrophobic. Particularly in the shuttle because we actually had great windows and great views and we didn't feel confined. I don't know what you think Bobby, but I didn't think it was like being in a cave or closet or a submarine. Dr. Robert Satcher: Yeah, I definitely agree with that, the views are spectacular. Patrick Loehrer: So William Shatner just went up and had a brief stint in space and is now considered an astronaut, but he came back with such a sense of awe. Can you describe a little bit what it's like, the view from up there and how does it leave you, particularly your first time up in space? Dr. Robert Satcher: The words don't completely capture it. The colors are so vivid, the view is so breathtaking. It's really impressive seeing the Earth, not only at daytime, but at nighttime and it goes beyond. It's one of a few things I always tell people, that really exceeded my expectation, in terms of what my preconceived notion of what it would be. And ever since going, that's what's so addictive about going into space, it makes you want to go back just to see that again and experience it again. The closest that I've come to seeing anything like that is, they have these new virtual reality experiences, where they actually got footage that they shot in high-def on the space station, outside the space station. It comes close, in terms of the look but it still doesn't fully capture it because the colors and everything, aren't as clear and crisp as it is when you're there. Because you're in the vacuum of space and there's nothing interfering with it and it's just spectacular. Dr. Ellen Baker: Yeah. I'll jump in here too and I absolutely agree with Bobby. And the other thing is, you orbit the Earth every 90 minutes, so you cover a lot of ground and you see a lot of the planet and in that one orbit, you get a sunrise and a sunset. So you orbit the Earth 16 times a day and get 16 sunrises and sunsets, so every 45 minutes the sun is either coming up or going down. It's really hard to know what time of day it is, in terms of your work day in orbit, but it's just magnificent. And it did give me a sense that we're all from the same planet and of course, it makes me wonder why we can't all get along better? Patrick Loehrer: I think people our age remember a few things, we remember the day Kennedy was shot. We remember the landing on the moon with Neil Armstrong. We also sadly, also remember the Challenger disaster and where we all were at that point in time. Ellen, you were an astronaut at that time. Dr. Ellen Baker: I was. Patrick Loehrer:> Can you reflect a little bit about that, if you can? I'm not sure I could do it without getting emotional, if I was there. Dr. Ellen Baker: Yeah, I was actually at work of course, and watching the launch and it was just devastating. Obviously, I knew everybody on board, I knew their families very well. And I have to say, we knew flying in space was risky, but we were still pretty unprepared for Challenger and for Columbia. It is something that I still think about. As weird as it might sound, I actually rescued the plant from Dick Scobee's office. He was the Commander of Challenger and I still have it growing. So it's a reminder that he was a good friend and a good colleague, it was a terrible blow, as was the Columbia accident. In that same tradition, I have African violets by my sink that were in Laurel Clark's office and Laurel was a physician who was aboard the Columbia, as well as Dave Brown, who was also a physician on the Columbia. Dave Johnson: That's an amazing tribute to both of your colleagues. It's very touching to hear that. I wonder if the two of you could share with us, what you actually did on your missions scientifically? How did you use your medical knowledge, if at all? And Robert, what about your oncologic knowledge, was that useful at all? Dr. Robert Satcher: Fortunately, no use for the oncology training in space. I got to use the orthopedic training. One of the most common problems is back pain the first few days when you're in space. We attribute it to, you're going into weightlessness and all of a sudden, there's these fluid shifts, you get more fluid in your inner discs, everybody gets taller. Dave Johnson: Well, let's send Patrick to space. Patrick Loehrer: We need to get up there soon, Dave. Dr. Robert Satcher: Yeah. Actually, during our visit, we measured everybody's height just so that we know what that change was and we did do a experiment actually, that my background came very useful for. We were looking at the effects of bisphosphonate on bone loss. So bisphosphonates, well, everybody knows, this is ASCO, a class of drugs, anti-absorptives, used in patients with bone metastasis. It was actually being tested in rats, thinking about countermeasures for keeping people from losing bone in long duration, space trips. Unfortunately, bisphosphonates come with a lot of effects. But it did seem to work, in terms of the bone mass, which is induced by weightlessness in rats. And then finally, I was the crew medical officer for my group because I was the only MD up there in our crew. Ellen probably was the same in hers. So, what that involves is, NASA was one of the first places to pioneer use of telemedicine. So, you're basically, communicating with the flight surgeons on the ground every day, talking about what sort of medical issues there are with the crew and getting their recommendations for dealing with whatever it is. So yeah, being a doctor actually came very much handy. Dave Johnson: I was going to ask both of you. During your flights, did you encounter any medical emergencies without violating HIPAA? I mean, did you have to do an appendectomy? Dr. Ellen Baker: No appendectomies and fortunately, no emergencies, astronauts are pretty well scrutinized and examined before flights. And I think the best insurance against a medical problem in space is to send crews that are really fit and really healthy. And of course, there's always the risk of things like trauma, but the risk is actually fairly low. So no emergencies on my flight. Patrick Loehrer: There's no RVUs up there are there, that you have to worry about billing or no? Dr. Robert Satcher: No, we didn't have to deal with third-party payers. Patrick Loehrer: This is looking more and more like a job I want to pursue here, I'm going to be taller and there's no billing. This is great. Dave Johnson: I want to hear from Ellen, what sort of experiments she was involved in and how her medical background helped her assist with that? Dr. Ellen Baker: Yeah. People think, "Gee, if you're a doctor and you're an astronaut, they selected you to be a doctor in space." But in fact, astronauts are selected sort of generically. So once you come into the office, you're trained as an astronaut and Bobby and I were both mission specialists, as opposed to astronaut pilots. And so we received training on all sorts of different things. Bobby did a space walk. I trained for space walks, but never did one. We trained on the remote arm. We trained how to fix things when they were broken. I was actually a flight engineer on one of my flights. But that aside, I was also the crew medical officer and on every flight astronauts participate in medical experiments, because we are trying to gather lots of information from very few people on the physiologic effects of space flight, particularly looking towards longer flights, perhaps back to the moon or to Mars. So I did participate as a subject, I was an operator in a few medical experiments, but the bulk of my responsibilities actually were not medical. And I think Bobby, maybe you would agree with that? We did have some flights that were designated as what I would call, space life sciences flights, but there was only a handful of them and I was not a crew member on any of those flights. Patrick Loehrer: Boy, I could spend another three hours on this and would love to hear more stories. Dave Johnson: This concludes part one of our interview with former NASA astronauts, Drs. Ellen Baker and Robert Satcher. Please be sure to tune in to part two of the interview, where we will learn more about the incredible work they're doing in their post NASA careers. Thank you for tuning in to Oncology, Etc., an ASCO Educational Podcast. If you have an idea for a topic or guest you would like us to interview, please email your suggestion to education@asco.org. Thank you for making Oncology, Etc. a part of your day. Announcer: Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click subscribe, let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at education.asco.org. Announcer 2: The purpose of the as podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guests statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy, should not be construed as an ASCO endorsement.

In part one of this two-part ASCO Education Podcast episode, Drs. Stephen Berns (University of Vermont), Tyler Johnson (Stanford Medicine) and Katie Stowers (Oregon Health & Science University) chat candidly about what it takes to deliver serious news to people with cancer effectively and compassionately. Subscribe: Apple Podcasts, Google Podcasts | Additional resources: education.asco.org | Contact Us Air Date: 2/16/22 TRANSCRIPT Steve Burns (Dr. Burns): Hello. My name is Steve Burns. And I am a Hospice and Palliative Care Specialist and Associate Professor of Medicine at the Larner College of Medicine in Vermont. I'm pleased to moderate this episode of the ASCO Education Podcast focused on clinician patient communication in the context of delivering serious news to patients and family. I am joined Katie Stowers, a Hospice and Palliative Care Physician and Assistant Professor of Medicine at Oregon Health & Science University and Tyler Johnson, a Medical Oncologist and Clinical Assistant Professor of Medicine at Stanford University. Well, this is a serious discussion on delivering difficult news to patients and families. It is an extremely important one that I'm glad to be having. Let's first start with our question, what is bad news? I'm delighted to answer the question first mostly because I have an issue with calling it bad news. It really comes down to some of the training that I had as a palliative care physician when one of my attending said, don't assume it's bad. And I remember an example that I had for one of my first couple of patients, where the patient, when we were explaining that she had metastatic cancer and that she was likely going to die from this illness, she said, "Oh my gosh. I'm so relieved because I've been looking for an answer for months." So what made me realize during that moment and also what my palliative care attending reminded me of is don't assume. And this is consistent with a study that came out, I think, by Anthony Balkin like 2011 where they did a qualitative review of patients encounters with serious news and bad news. And patients actually gave feedback that said, "We don't want the physicians to judge our news." Again, sort of reframing that, it's better to call it serious news rather than bad news. Dr. Tyler Johnson (Dr. Johnson): I'll build off of that and just say that I think it's also important that we recognize that sometimes when we call something bad news, what that's actually reflecting is what our experience is going to be or what we anticipate that our experience is potentially going to be, which is totally fair. It's absolutely valid to say having to share this news is going to be a difficult part of my day. And therefore, I think of this as sharing bad news. In fact, I think that recognition is important and can lead to important reflection and even to self-compassion. We should be candid about the fact that this is a hard part of our jobs. I mean, who likes to share life-changing, sometimes devasting news with patients? Nobody wants to do that. That's never going to be a fun part of your day. I think, though, that it is important to recognize that that's a different question from how the news is going to land to the patient. Sometimes those things will match up and sometimes they won't. And it's important for us to be circumspect and careful in the way that we think about both how the news is going to impact us and how the interaction is going to impact us and also how it's going to impact the patient. Dr. Burns: I'll move to the second question, which is what is the ideal circumstance or modality, in person or video call or telehealth, to deliver serious news to patients? Dr. Katie Stowers (Dr. Stowers): I was actually struck on reflecting on that question about the ideal modality. I think COVID has actually really changed the way that I think about that question. Pre-COVID, I would have said hands down, everybody sitting in the same room being able to reach out and touch someone or be able to see them. But COVID has actually changed that. The people who need to be there aren't always able to be there because of hospital visiting restrictions. And being in the same room often means three layers of PPE between you and the people you're trying to talk to when they can actually see your face. I found some really meaningful encounters of delivering serious news that's been able to happen virtually in a way that I think I would have really surprised about pre-pandemic. I just had a patient in clinic with me a couple weeks ago who we were sitting there face-to-face, but visitor restrictions in our cancer center still wish she couldn't have anyone with her in the clinic. And so we were sitting there together and she wanted information. She wanted to review information that her oncologist had given her about prognosis. And so we were going to start to talk about that, and immediately she became overwhelmed and well, let's get my family on the phone. And I would really like somebody else to hear this information. And ultimately we realized after trying to get people on and not being able to contact them that actually the best way to do this was going to be a virtual visit where she was home with her sister, with her dog in her lap, her aunt in New Mexico and her uncle in Alaska were all able to come on. We were all able to share this information together. And it was this really lovely moment where she had all of the things that she needed, and it had nothing to do with being in clinic. In fact, clinic brought a whole different set of stressors. And so I think the way I've looked at this really is different and it's what does this person actually need? Do they need me to be able to physically touch them or do they need their support system? Do they need to be able to see my face without a mask? What is it that this individual needs? And I think that's more of how I go in and approach thinking about the ideal circumstance now. Dr. Johnson: Yeah. I think that there is a lot of truth to that and because we are so constrained and clinic often now. The one thing that I will mention as a practicing oncologist that I have recognized is really important, though, if you're going to try to leverage the advantages that can come with technology is that it's really, really important to make sure that the patient is tuned in to the kind of conversation that you're going to be having before you launch into a discussion where you're going to be talking about serious news. Because what we have found is that often when people are coming to see us, it's part of a multi-hour half day or even a full day. They come in and see us. Then they get their labs drawn. They go to the waiting room. Then they go to get their chemo. Then they have to sit for a minute and be monitored afterwards. And sometimes it can be six or seven or eight hours. The reason I mentioned that is to say that what we have found is that many of our patients, for instance, are now having video visits with us, where we can tell them. They're like in the car driving in to get their labs done. And they love that because they're able to save an hour or two of time instead of sitting in our waiting room, they're doing the visit in the car. But as wonderful as that is for efficiency for somebody who's riding the chemo train, that's not the place that you want to be having this kind of serious discussion. And so I think that if you know that you're going to be having a visit that is going to involve sharing serious news, it's really important to say, "Hey, I just want to let you know that this is going to be a particularly important discussion. Can you make sure that you're in a quiet place where you can really focus here and have whatever family members or friends or whatever, your support that you want there so that they're keyed in a little bit?" Because if they're in clinic, we talk about preparing the right space. It's better to do this in a private room in the hospital than in an Emergency Department with 27 things going on you. So by the same token, I think we have to give them the opportunity to sort of prepare the environment to allow them to have the best experience. Dr. Burns: I agree with both you Katie and Tyler. I think about most of my work's done in the inpatient setting and just thinking about even in the inpatient setting, making sure that even though a patient has their own private room, sometimes they don't and they have a neighbor that they're sharing it with and thinking about how do we create that privacy for them? How do we incorporate their loved ones, whether that's actually using now a iPad that rolls in where you can now have a Zoom conference with their loved ones across the country or across the globe. But the other piece is really thinking about not tacking it on to the end of your rounds, but really setting aside some time to do that. And that's even physically having someone hold your pager, silencing your phone so that you can be present for that conversation, just like how Tyler described that in the outpatient setting. Dr. Johnson: Yep. Totally agree. Dr. Burns: Well, thinking about who should be involved in the conversations, do you discuss as a team, which member of the cancer care team will deliver bad news to the patient and family? Dr. Johnson: I can maybe address this one first and then you guys can add on. I think I come at this with a slightly different perspective because I'm actually a practicing medical oncologist. I'm not a palliative care doctor. I actually think that there are important points to be made on two ends of a spectrum here. What I mean by that is that one thing that I is important is to recognize that there is more kinds of healthcare providers can be involved in these discussions than we sometimes may think. So for instance, Manali Patel, who's a health services researcher here at Stanford, has done a lot of really interesting work lately with lay health workers being able to help have the first parts of these discussions in terms of exploring the values and priorities and needs of the patients. And basically what she's shown is that while there was initially a lot of skepticism, how can a layperson be involved in those discussions. After some training, these people actually do wonderfully well. I think by the same token, there are many members of the healthcare team that can help with that part. Having said that, I do think that there is also then a part of it that most patients appreciate coming from one of their primary healthcare workers. I think that as oncologists, we're here talking to the American Society of Clinical Oncology audience, I think it's important that oncologists recognize that there are certain things that patients really want to hear directly from you. And I think that in particular, some of the harder things to say, like we really don't have other meaningful treatment options left, that phrase I don't think land in quite the same way if it comes anywhere but from the treating oncologist because there's always going to be this thought in the back of the patient's mind that maybe my oncologist has something else in line or I need to talk to them later or what have you. I think that while on the one hand, we should broaden the spectrum of people who can be involved in these discussions, I do think on the other hand that it's important to recognize that there are some parts of this that really are most effective when coming from the treating oncologist. Dr. Burns: Tyler, I think you hit on the importance of the relationship of the oncologist and the oncologist team with the patient and their loved ones. I often think of out this tide of care cartoon. I think it's almost like a far side cartoon where it's a physician who's sharing news to a patient and says I have some really bad news. So I'm going to get someone else to say it for me. I often feel like, as a palliative care physician, I sometimes am thrown into the mix. Am I the one delivering this news? What I really enjoy is partnering with the oncologist and even joining together when we can or for me to check in with a patient after the news is delivered, just because of how important that relationship is between the patient and their oncologist. The only other thing that I would add is I love having a team with me during those meetings. And so if I can in the outpatient center or inpatient setting, having a nurse or a social worker or a chaplain join me because sometimes I misstep and I say more than I should or I don't notice emotion. And I think having the other interprofessional lens there to watch and observe can interrupt me, give some feedback in the moment and/or take a step back so that we make sure that patients understand on what's going on. Dr. Stowers: I think, Steve, the part that I love about delivering news with the team is all the things you said. And when I notice my own emotions or I feel stuck on what to say, there's somebody there who can kick the ball and run with it for a bit so I'm able to catch back up. I wanted to add on to something else that you were saying, Tyler, about this relationship between patient and oncologist. And I see that a lot where patients will come to me and they're not ready to talk about things until they've heard it from the oncologist first. I just have got this morning this guy who got discharged from the hospital and hospice had been brought up in his visit, but he sees his oncologist on Friday and there was no way he was going there with me and how he's able to talk to his oncologist rightly so. I also see the flip side of it not too infrequently where the relationship that the patient has with their oncologist is they're the gatekeepers to life prolonging treatments. And they see any discussion of worries or fears as a weakness that maybe will make it less likely for them to get those treatments. And so I also see that patient population where they see me as the place as a palliative care provider where they can talk about some of those things that they're not ready to talk about with the oncologist. They need the oncologist to be positive treatment focused and they need another place that's not the oncologist to talk about those things. Dr. Burns: Yeah, Katie, I just actually had a case like this last week where a patient says that she is really tired of the chemotherapy she was getting. She has a head and neck cancer, but she was afraid to bring it up with her oncologist because, she says, "I need to be brave in front of her." And I just thought how interesting that was. And so every time she's in the room with the oncologist, everything's fine, everything's great. And then when she's speaking to me, she's like not everything's fine and not everything's great. And so I just think that the illustration of, yes, it would be great as a team, sometimes when we individually approach it, people do feel comfortable saying something differently outside of their oncology visit. Dr. Johnson: I think that one thing that this all gets to that I think is what all of us are saying, but it's worth articulating is that, Steve alluded to that cartoon at the beginning of this part of the discussion. The sort of underlying message from that is this idea that we as medical oncologists involve palliative care doctors if we don't know how to do something or we're not interested in doing it. And of course there may be times when the patient is better off with a skilled palliative care doctor doing the conversation that maybe a less skilled oncologist doesn't know how to do so well. But that's certainly not the optimal outcome. The optimal outcome is that there is teamwork and a partnership between medical oncology and palliative care. I think that teamwork creates a synergy where, because you're right, that the patient may have one face that they put on for the oncologist and a different face that they put on for their palliative care doctor. And I know there are times when I can sense as the oncologist that there is something just below the surface that they're not quite ready to bring up to me. And sometimes in those cases, I will say at the end of the visit, "I think this would be a really good time to touch base with the palliative care team." And what I'm really thinking is because there's clearly something else you need to talk about that's not going to come out right here. So I want it to come out when you get to meet with them. Then of course, especially in those kinds of cases, having a little bit of back channels communication after the visit with me so that I can prep the palliative care doctors and let them know that I feel that there is something else there to be addressed, I think is really important. Dr. Burns: One question to think about is how do we prepare? How do you prepare for delivering serious news? I think I will say that the first thing I like to do is do my biopsy of the situation. I know that's quite medical to use as analogy, but I like to know who are the players? What is the prognosis? And what I need to do is do a really thorough check-in with the specialist. So oncologist or if there's a radiation oncologist involved to check in with them and to actually check in with the patient about information preferences and/or who would like to be in the room or who they would want to be in the room. I think all of that helps prepare it. I always use the analogy with my trainees, like a good, serious illness discussion or a good delivering of serious news is a lot of preparation, just like how we learn to put in central lines. A lot of it's the prep and then the central line when you place it is pretty quick. And so I certainly think about delivering serious news in the same way. Dr. Stowers: I think the part of preparing for serious news that we probably don't think about as much is the part about preparing ourselves for giving this serious news. And Tyler, you alluded to that earlier on in the conversation of what am I bringing to this conversation? I, through a series of tough experiences when I was a new palliative care physician in a busy outpatient practice, really found myself losing the empathy that I really prided myself on having in my clinical encounters. And I walk in and be like looking at the clock, like tapping my foot as this person's crying in front of me and like, holy smokes, what's going on here? And I realized that I was not prepared to give this kind of news. And so really started instituting before I knock on the door and go into the office or click the virtual visit now as it, I'm making sure how am I? Have I gone to the bathroom? Have I eaten? Am I hot? Am I cold? Like how does this patient make me feel. What are the emotions that I'm bringing up? What are the biases that I'm bringing to this about what outcomes do I really want from this conversation and doing this little mini-checklist of how am I and what am I bringing to this conversation has really helped me get a lot more centered before I walk into their room. And so I think that that should absolutely be on that checklist that we do as we're preparing for these conversations. Dr. Johnson: I'll say two things building off of those great points. One is that I think, to Katie's point, I think it's important that we put a plug in here for a holistic evaluation of your own wellness as a doctor in the big picture perspective. And obviously, I have my own bags under my own eyes after the last two years of the pandemic. You can choose if I'm the pot or the kettle, but I recognize that I struggle with this just as much as anybody. But it's just to say that if you're not eating well and you're not sleeping well and you're not getting some exercise and you're not taking time for yourself and you don't have a sense of self compassion, it's very difficult to fake empathy. It's very difficult to pretend to be present. And if you try, it usually just doesn't really work. I mean, you kind of either are present or you're not. But the issue is that you can't summon self-care in the moment that you need it. You can maybe try to do that for a couple of days. I think that largely is what burnout is. It's trying to magically materialize self-care as if you can do that the moment before you walk into a room and that's just not how the human psyche works. So that's thing number one. The other point that I would make is that, and I feel like this is one of those things that I just have to learn a thousand times over the course of being a clinician, because no matter how many times I learn it, then I forget it and it blows up in my face and I think, oh, well, yeah, I forgot that lesson again is how important it is that the first thing I do when I get in with a patient and I'm preparing to have one of these discussions is to talk with them about what they already understand about what's going on. Because you have some patients who you're surprised to find that you know that they're on end of line chemotherapy and they have overwhelming disease burden, etc., and then you ask them what's going on. And they say, "Well, I'm just really excited for the next chemo because doc, you said that the next chemo was going to be the one that was going to make the difference." when of course you probably think you didn't say that. But the point is just to say, that's very different than if you ask the patient and they say, "You know, Doc, I so much appreciate everything you've done. If I'm really honest, I kind of feel like I'm dying. I think that's where I am." Well, those are two totally different discussions. And if you come in assuming either of those things and it's actually the other one, then you're either going to waste a phenomenal amount of time or it's just going to be a terrible encounter. And I've made mistakes on both ends of that spectrum, which just reemphasizes for me the importance of figuring out where the patient is before I start saying anything. Dr. Burns: And Tyler, I also think about the efficiency of these conversations. Often we are so worried it's going to take so much time. And when you start with, what have you been told or what do you understand or what's been going on with the big picture of your cancer, it does save time. So you don't actually have to repeat from the top. And I will say I've also watched people still and I caught myself a couple times where we still ask, what do you understand? And then we still repeat the whole story. And so I certainly encourage all of us to think like if they heard it, totally fine to move forward, but the other efficiency piece and I know all of us have been vital talk trained thinking about a headline in like a big picture. What is the big message? I always think about a headline is what is sort of the summary of the medical information and what is the impact on the future of this person's health? Knowing that we often are pretty good with the summary of the medical information but a little less good at the impact. I always find that that helps them better understand their big picture and be able to then share the same information with their loved ones. They could easily have that catchphrase or a two-liner that they can say, guess what? The oncologist has shared this with me. I think that's so helpful when they're thinking about their overall care and helps them inform their goals and priorities and helps us better understand their goals and priorities. That concludes part one of our conversation on delivering serious news. In part two, we will continue the conversation on how the care team can prepare for delivering serious news. Useful resources and more. Thank you so much to all of our listeners for tuning into this episode of the ASCO Education Podcast. Speaker 1: Thank you for listening to this week's episode. To make us part of your weekly routine, click subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive eLearning Center at elearningdotasco.org. Speaker 2: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.