Thomas Smith, M.D., F.A.C.P.
Professor of Medicine and Palliative Care Research
Massey Cancer Center
Virginia Commonwealth University
Dr. Baile: Hello, I'm Dr. Walter Baile, professor of Behavioral Science and Director of the MD Anderson Cancer Center Program on interpersonal skills and relationship enhancement or ICARE. Today, we're very pleased to have with us Dr. Thomas Smith. Dr. Smith is professor of medicine and Massey endowed professor of Palliative Care Research at Virginia Commonwealth University. He's also Medical Director of the Thomas Hospice Palliative Care Unit at VCU. Dr. Smith has held many leadership positions in oncology serving as chair of key panels and working groups for both ASCO and the Institute of Medicine as well as policy committees for the American Association of Hospice and Palliative Medicine. He's published widely in the area of palliative care and cost effectiveness of cancer treatments. As well as ways in helping cancer patients makes decisions about their care. He's also been extremely well funded for research in both of these areas and has published widely in this field. Tom, thanks for being with us today.
Dr. Smith:Well, thank you. Thank you, Walter.
Dr. Baile: So, I wanted to start by asking you a little bit about your involvement with the Institute of Medicine and ASCO around issues of cost and value of care. How did this come about and where do things stand now?
Dr. Smith: Well, the value of oncology care has been increasingly important as we recognize we are spending more and more and more, our death rates on cancer aren't any better than most other countries. So we need to figure out a way to spend the limited dollars we have in the wisest way to help the most number of people. So that's been a rising issue with the institute of medicine with the NCCN, with ASCO. And I got in as part of the initial program to develop guidelines for practitioners, so to make clinical practice guidelines to help define good care. So we did that with the American Society of Clinical Oncology and found that they actually didn't change practice that much and unless people know they're going to be monitored, unless there's some consequences to deviating from practice, then people continue to do that which they're most comfortable with that which they are trained to do. In some cases that which brings the easiest way of treatment and the most reimbursement to the practice.
Dr. Baile: So, culture change is difficult but certainly at least my reading of new Health Care Reform Act is that it's really going to push us in the area of doing less with more. Is that what you--is that correct?
Dr. Smith: Culture changes are always hard. We put in a huge electronic medical record in our system and the people who were there as helpers walked around saying change is hard, change is hard. I wanted to throttle them about seven days of learning to use a completely new system. So change really is hard. The Affordable Care Act doesn't change care all that much. What it does is recognize that a lot of people can't get care. A lot of people are uninsured and it would bring in some 30 million more. There has to be a way to provide some minimum level of care for most Americans. And so what it tries to do is set up some reasonable standards of care eventually over time by setting up a--some outcomes research and some comparative effectiveness research to try to figure out if there are two ways of treating the same problem that work exactly the same way. Let's choose the one that least effect, choose the one that's least costly and at least as effective. Right now the data shows in most oncology practices that people may choose the therapy which generates the most reimbursement for the practice and that's something that has to be looked at very carefully. Sometimes a good reason for that that's the best treatment that's available but the data so far appears to show that people make decisions sometimes based as much on reimbursement as based on the science.
Dr. Baile: Of course the science is very important but it all really comes down to the individual patient and how we have discussions with them about their care and I know that you'll be speaking at the upcoming Institute of Medicine conference in February on Patient-Centered Cancer Care. And could you tell us a little bit about what that's going to be about and what you'll be talking about?
Dr. Smith: Sure, that the whole goal of that conference is to enhance the survivorship experience and whether that survivorship is for two months after you're diagnosed or 20 years or a lifetime try to make it as good as it can be within the bounds of reason of what we can provide medically and what we can afford as a society. The goal of the conference is not to talk about ways to limit care. It's really to enhance survivorship. What I'm going to be talking about is ways our group has developed to help people understand what they have? What can be done about it? And what's going to happen to them? Those are typically the three things people asked me. What do I have? What can be done about it? What's going to happen to me? And we've evolved the way of writing things down. So I know the first time I tell somebody, you have breast cancer spread to your liver. They're not going to hear anything for the next 20 minutes maybe 60 minutes, maybe 2 weeks. But if I give them time to adjust and then sit down and sit next to them and I'll write down, here's your diagnosis. Here's the stage of the cancer. Here's the spots to which it's spread. Here's what's likely to happen to you after of course having learned from you, you ask permission. What do you want to know about your cancer? What do you know about your cancer? But then you can proceed to giving us best guest scenario you can for that person's cancer. Tell people that that's the average. Some will do better, some will do worse. My colleagues in Australia like to talk about the best case scenario and the worst case scenario and that works really well too. You talk about prognosis. You talk about treatment options. We could either do Adriamycin as a single agent or we could do combination therapy and the reason to do 2 or 3 drugs versus one then list how long they might live with and without therapy if that's known, often times it is you can estimate from clinical trials. What's the chance of the cancer shrinking? What's the chance of their quality of life will actually improve? 'Cause sometimes people chemo--sometimes people's quality of life really improves on chemotherapy when they think it's just going to be terrible. 'Cause sometimes you can actually give people information that helps them choose more chemotherapy rather than less, the purpose of not to just having to do less. And then I always list, here is what I want you to call the office for, nausea, vomiting, fever over a 100.5, diarrhea, and then I list the phone numbers. Here's how you contact me or if I'm not here, the person who's covering for me. Can fit usually on one or at most two pages. It's a written record that that person will carry around with them. They'll bring in into the emergency room. Or when they're in a different state, they'll take it to there new doctor there. They can share it with their family. I've had people scan them in and ship them all around the world to the relatives so they know what they have, what's going to happen to them, and what can be done about it? Works really well and one of my good friends, Peter Eisenberg out in Marin County near San Francisco, trained his doctors to use this in the office for first time consultations. And he found it actually saved them time, that their average time for first consultation went down by about 5 minutes if they wrote things down with the patient there present. Because it answered all the questions and the person who comes in with their 20 pages of single spaced questions on their steno notebook, "Oh, you covered that, you covered that, you covered that, you covered that. Oh, what should I do about multivitamins? What should I do about supplements?" It really does save time. It improves the communication process. I suspect that it fairly dramatically enhances people's understanding but I don't know for sure.
Dr. Baile: I think the issue of time is really important because there is this belief that conversations about prognosis or end of life care or psychosocial aspects of care really take more time. So, I was pleased to here about that data. The other thing I was thinking of is, you know, if you don't take the time that it's likely you might get a phone call and they had to from the patients saying, now, you know, I had an additional question for you. So, I'm a believer that taking a little bit more--putting a little bit more effort into how we talk about things can really save us time at the moment within the next couple of days.
Dr. Baile: But there's another very interesting belief I think in the oncology field among practitioners that having conversations about prognosis with patients can destroy their hope. And to me working in the communication skills field we had a little study at ASCO a number of years ago in which it was the number of one concern among practitioners and I wonder what you think about that?
Dr. Smith: Well, when I talked to other oncologists or when I query myself late at night and ask "Why don't we have these conversations which our patients tell us what they want, they really want to know what's going to happen to them." The two answers I give myself and the two answers I hear from my colleagues are exactly what you say. I don't want to make people depressed and I don't want to take away their hope. I think the data are very clear from that coping with cancer study, one, that if you have this discussion about the fact that the person's going to die from their cancer and help them plan that they're in fact less likely to be depressed. Fairly conclusive data and from Jennifer Tomel's [phonetics] randomized trial where a palliative care team worked alongside the oncology team to help explore those issues, patients were less likely to be depressed. Caregivers are less likely to be depressed and care givers are more likely to cope better if they're informed about what's going to happen with them. I think that's--those are the data.
So depression or the fear of causing depression I think can be scratched through. Then it will take away the person's hope. I've heard that in at least 10 different countries. So we studied that and we gave 27 people in a row fairly representative cancer patients at--in Richmond their actual prognosis which included the fact that there was no chance of cure from medical science. The average person will live just a few months that treatments could cause some side effects but might help some too and then we gave them the actual numbers and then gave them some transition prompts. Now, is a good time to think about a will, our living will who could speak for you if you can't speak for yourself a life review of what you want to do with the time that you have. Are there--If you want to make a DVD of yourself or write some notes to your kids since you likely won't be here in 6 months or a year. And we studied the hope, using the hurt hope index. And their hope, lo and behold didn't get squashed. No matter how hard I tried, I could not squash their hope. In fact their hope went up. And that's consistent with what we know from kids who have cancer and the oncologists has an honest discussion with the parent. If the oncologist has an honest discussion about the parents, about the prognosis their hope actually goes up. Back to the time issue, we actually studied and Jim Tulsky's group at Duke studied how long it takes to do a do not resuscitate discussion and it might feel like 45 minutes. But in fact when you have a stopwatch on it's about 6 minutes in our shop to have that discussion and it's about 10 minutes in North Carolina. It's not forever.
Dr. Baile: Interesting, very interesting data. So, we know that limiting aggressive care when it's not indicated, in the case of advanced cancer, can save money. We know that having discussions with patients about advance directives and about limiting care does not cause them to be depressed or to freak out or jump out of a window or anything like that. So, I'm going to ask you a tough question now, is that how do we move oncologists into having these discussions?
Dr. Smith: Oh, how do we move oncologists to having the discussion that no one wants to have? It's really tough. And anyone who stands up and says, "Well, it's just part of the oncologist's job." I can almost guarantee that they've never been in the position of having that discussion when the oncologists likely feels personally responsible for what's going to happen to that patient. Whether that's fantasy or not, that's a way most of us feel. We feel like it's a failure when the cancer grows that we can't help them that surely there's somebody, maybe somebody at MD Anderson who could fix this person's cancer when you can't. And those are really self doubt questions that cause you to reexamine everything that,s happened, make you question your choice of profession all before going in and having what's a really difficult conversation for you and for the patient. That's where it's really critical to have your body of work which gives us the skills. I need a script and I need training. This is not something that I got in my medical school training, fellowship training. I need to have a script and I need to practice it just like anything else in medicine. You don't put in your first central line by reading the instructions on the kit then going to go to do it. You get walked through it and you watch somebody who role models how to put in a central line and it's just the same thing with breaking bad news.
Dr. Baile: You know, it's very interesting because I think that--that there's an important distinction to be made around the patient's reaction to hearing bad news. You've been discussing prognosis. Because this myth about depressing cancer patients that while studies show that the long term effects of having a discussion about end of life issues or prognosis doesn't result in patients, you know, getting morbidly depressed and withdrawing and not wanting to talk to anyone. The short term issue is one of the patient's emotional reaction. And I think it's really hard for oncologists when patients cry or they get angry or, you know, they complain about the fact that someone told them that this therapy was really going to be effective with them and I remember a study that Jim Wallace [phonetic] who is in Chicago, a palliative care doc, you might know him, kind of did and he got 750 oncologists to respond to the question of how do you feel when you have to give patient information or have discussions about limiting further treatment and people said, "I feel said, you know, I feel like the rug's been pulled out from under me, I feel like the, you know, I've harmed my patients." And I think that those feelings together with the patient's reactions are somewhat time limited. You know, and I see it as the job to help oncologists to get through that particular period because as you pointed out that if as time passes patients do come to grips for the most part with that kind of bad news. And then do go on to think about, "Gee, I'm glad to be spending time here with my family than being in the ICU." So that sort of a real challenge to sort of roll out strategies to kind of help both the patient and the oncologist through that critical period right after giving bad news or in the midst of giving bad news. Would you--would you agree that?
Dr. Smith: I couldn't agree more. It's--Having that conversation is the worst time of my day while I'm having it. Oftentimes people will say, "Well, thank you Tom, I know that must have been terribly tough on you but that's exactly what we needed to hear." And more than likely you'll get a thank you note or a phone call or an e-mail saying that was tough but now at least we can plan, we know what's going to happen to us. You have to get through that short term pain in order to have some long term reward. One thing that isn't talked about much is kind of repetitive motion injury for oncologists. Because we might have to do this 2 times a day, 5 days a week, 48 weeks a year. And I think that repetitive exposure to giving people bad news can be really tough. I know it's tough on me and I'm reasonably put together and have reasonable training in it and I know I dread having those discussions so I suspect that others do as well. It's such a contrast between me when I'm wearing my palliative care hat and me when I'm wearing my oncology hat. When I'm wearing my palliative care hat I'm there oftentimes with a psychologist available, a wonderful chaplain, two advanced practice nurses who are great at having these sorts of discussions and I can go in and be part of a team that says, "Your disease has really progressed to a point where we can't make the disease go away, let's talk about how you want to spend the time that you have." And we in fact are not responsible. We don't have the personal sense of failure of the disease therapy not helping. We can be the heroes rather than the goat and help that person. And I've got this whole team to help support me. When I'm in the oncology office, it's just me, maybe another oncologist, maybe an advanced practice nurse who's busy seeing her own patients, and nurses in the back giving chemotherapy. It's a very different set of support systems. I think we need to think about how to support oncologists when they do this. Not only the immediate pick up the chart, go in and have the conversation, but then reward somehow that person for doing the right thing with his colleagues, there maybe at the end of the day, maybe at sign out rounds, we haven't thought very much about that as a practice.
Dr. Baile: Yes, and I think that the focus really has been all too much on what we're--one is not doing for the patient versus one of what you're saving the patient from. Again ICU admission might not be necessary or, you know, continued co-payments on additional chemotherapy when it might not be indicated. And so, you know, I'm thinking that maybe when the focus shifts to a little bit around to, "Gee, you know, you're helping maintain this patient's quality of life that might make it a little bit easier," but I have one last question. That, you know, one of the things that has been recommended and that was a wonderful paper that you co-authored in the Journal of Clinical Oncology this month about personal care that one of the recommendations was to backup the discussion of the efficacy of cancer treatments to the time of diagnosis or the first therapy. And in the case of cancers like sarcomas where you may know that the prognosis is not going to be good to have the discussion at that time so that you can later refer back to the discussion when the treatment isn't working and did I understand clearly that that was one of the sort of pearls that came out of that paper and it was a take home point for me that we really need to be teaching folks to do a better job of it then because it may become easier down the line when the patient has that discussion at least embedded somewhere in their mind that you haven't created false expectations, because I think that's what makes the conversation so much more difficult later on.
Dr. Smith: Right. Sometimes patients really feel bludgeoned when you get to a few weeks before they're clearly going to die and you say, "Well, there's no more therapy left for you, or there's no more--there's nothing more we can do." It really helps me to be able to say to the patient, "Remember that first time I saw you 2 and a half years ago, and I pulled out my own copy of the green sheet that I've written down their diagnosis and prognosis and treatment planning for them? I told you that we do our best to keep the cancer at bay for as long as possible and not make you too sick in the meantime but at some point your pancreas cancer will grow and there really won't be a chemotherapy drug to make it go away. We've tried gemcitabine. We've tried five or few on oxaliplatin. We've tried irinotecan. We've tried three different things and it's continued to grow. We're at that point now." And it doesn't come as much of a shock then because hopefully along the way they've remembered that, "Oh, I might die from this." There's a wonderful study about lung cancer patients from the CanCORS study that was published last year in the archives of internal medicine. It looks at lung cancer patients, the median survival is still 8 months, most lung cancer patients but thought of course they would live more than 2 years and the people who thought, "Of course I'm going to live more 2 years," were the ones who are least likely to have any sort of end of life discussions with their doctors, least likely to have a DNR discussion or do not resuscitate discussion and least likely to go into hospice. And so that false hope which is never corrected leads people into bad decisions because those are the same people who're more likely get admitted through the ER, end up in the ICU, end up in a ventilator, dying on a ventilator, dying in the hospital when in fact nobody really wants to do that. So I think by giving people honest information if they want it, when they want it, can help them make better decisions.
Dr. Baile: Well, I'll be looking forward to your next paper on pulling out the green sheet.
Dr. Smith: Yeah.
Dr. Baile: Because I think it might be important to give--actually give oncologists very concrete ways of sort of dealing with these discussions, sort of like a step-wise protocol for going through a discussion of prognosis early on so I think that was very interesting to hear about what your--what your own method is.
Dr. Smith: That's one other point I would make. When the oncologist is telling somebody that their disease is at its final stage and there really isn't anything more to make it go away, we often send people to hospice. And what I feel sometimes is a tremendous sense of loss because those patients are no longer under my care. And unless hospices in the rest of the world are a lot better than they are in Richmond, Virginia, I may never hear from that hospice again or the patient until they die. And I have about a 50-50 rate of being actually notified by the hospice when the patient dies. I hope it's better elsewhere. We have some great hospices and we have some so-so hospices. So one of the tricks I've learned when I send somebody to hospice is to say, "Really, I'm not abandoning you, because sometimes it feels like that. I am still your doctor. I'm still going to be getting communications from the hospice team. They become my eyes and ears. And then I'll actually schedule a weekly visit with those patients for 15 or 20 minutes even though I know that it's not likely that they'll be able to come in to the hospital or to the clinic and see me. Because that's a little personal goad to tell me to pick up the phone, call them at home, and see how they're doing. I have that little yellow box with so and so,s name on it that reminds me to pick up the phone, dial them at home and ask "how are things going?" I dread doing it but almost invariably I hang up the phone and say I'm really glad I did that.
Dr. Baile: Well, you know, as a psychiatrist I can tell you that that little technique is extraordinarily therapeutic for patients because they're so vulnerable to feeling abandoned and I think any time that we change care from us to someone else that there's always that sense of that kind of, you know, leaving something behind. Well, thank you very much for chatting with us today.
Dr. Baile: We've been talking to Dr. Tom Smith of Virginia Commonwealth University Massey Cancer Center and it's been a very interesting discussion.
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