Thomas J. Smith, M.D., FACP
Professor of Medicine and Palliative Care Research
Massey Cancer Center
Virginia Commonwealth University
Dr. Baile: Good afternoon. Welcome to the ACE lecture this afternoon. I'm Walter Baile, Director of the I CARE Program that's sponsoring the lecture and we're really pleased to have with us today Dr. Thomas Smith who is a professor of medicine at Virginia Commonwealth University and the Massey Cancer Center and also Medical Director of the Thomas Hospice Palliative Care Unit at VCU. So Dr. Smith has been at the forefront of discussions around value in oncology care, end of life discussions with cancer patients and ways of helping patients make decisions about--especially in advanced cancer care about treatment choices. So he's very widely published and funded in this area of both communication skills and palliative care for cancer patients and is a co-author of an article which just came out this week in the Journal of Clinical Oncology. Actually, it's a special article position statement on individualized care for patients with advanced cancer. So we'll welcome Dr. Smith today as he talks about when is it time to stop chemotherapy if ever. Tom, thanks.
Dr. Smith: Thank you all. So the oncology transport worker comes up to the oncology floor critical care hospital 2 and says, looks at his clipboard and says, "I'm here to pick up Mrs. Jones for her chemo." And the oncology nurse looks up from her charting and says, "I'm sorry but Mrs. Jones died about 4 AM" and the oncology transport worker says, "Well, Dr. Smith knew that but he still wanted her to get chemotherapy." [Laughter] And the oncology nurse rolls her eyes again, "Well, she isn't here. She's down in the morgue." So the oncology transport worker goes down signs into the morgue, shows his ID, goes over to cubicle number 12, opens it up, pulls out the tray, and it's empty. There's just a little yellow post-it note saying, "Gone to dialysis". [Laughter] Sorry.
So, when to talk about when to stop chemotherapy if ever, I'm a regular medical oncologist I treat lots of breast cancer patients, I do about 5,000 work RVUs a year which is pretty big for my place. I take care of a lot of people, that's what I like to do. What I wanted to do was run you through what I've learned about what most oncology patients want to know about their diagnosis, prognosis, and choices, know what they're told, illustrate some decisions aids and transition points and then talk briefly about why we do and don't do this. While patients say they want to know the truth, of 126 terminally ill patients, 98 percent said they wanted their oncologist to be realistic and that they thought that honesty is really associated with compassion and caring. They want their oncologist to be compassionate. It's always about 5 to 10 percent who really don't want to know. And they'll tell you that. So I've learned from Dr. Baile and I always ask people "What do you want to know about your illness? What do you know about your illness?" Those two questions will keep me from being the person who bludgeons the person over the head who didn't want information. What do you want to know about your illness? What do you know about your illness? Well, these investigators put an anthropology grad student along with 35 small cell lung cancer patients and followed them through the course of their illness. And they found out that the patients learned more about what was going to happen to them from other patients in the waiting room than they did from direct discussions with the doctors and nurses. And interviews show that the doctors didn't want to give a death sentence and the patients didn't want to hear it. People who were given high dose chemotherapy and bone marrow transplant--
[ Inaudible Remark ]
Okay, people who are given a bone marrow transplant pretty much always overestimate their prognosis, underestimate the toxicity and what's fascinating is that the doctors give the most information to people who have the best prognosis and the least information to people who have the worst prognosis. So the patient, unfortunately, is not able to really balance the risks and benefits very well. And it's pretty clear that people who are overoptimistic going into stem cell transplant or overoptimistic going into regular chemotherapy do not live longer. They may die a different death in the ICU unventilated but they don't live longer.
This is a recent study that came out. The average lung cancer patient lives eight months in the U.S., non-small cell metastatic stage IV. And two months before people's death, in thousands of patients, none of the doctors had ever mentioned the concept of hospice, which is why in that ASCO statement, we said that when a person is diagnosed with a life threatening and potentially life-ending illness, you should mention that there will be a time to think about hospice care, to think about transitioning to that point so it doesn't come like a sledgehammer when you have a week to live. After your cancer was diagnosed did any doctor or any other healthcare provider discuss hospice care with you? About half, still two months before they died hadn't heard any of that. Those who were expected--those who expected to live less than two years were much more likely to have discussed hospice, the great majority of people thought they were going to live longer than two years. Mostly because the doctors never had a discussion with people about how long they would actually live. And almost three quarters of patients who had a discussion before the interview had this discussion about hospice, used hospice within a year of diagnosis compared to just a quarter. The authors say that the doctors are facing a bunch of barriers, both the patients and families. It's difficult. It's time consuming. It's not adequately compensated.
Some patients prefer to delay this discussion or frankly not discuss the topics at all. However, even among the doctors who did a DNR discussion, they rarely took that opportunity to then say, "We know at some point you're going to die from this illness. How is it that you want to spend the rest of your life? How--what do you want to do? What are your goals?" So there are lots of missed opportunities. So cancer doctors like me routinely overestimate prognosis probably at least 30 to 40 percent. Elizabeth Lamont found that we don't like to give bad news. Big surprise we're--believe it or not, oncologists are human too. Jane Weeks found in the support study that solid tumor patients who were overoptimistic about their chances don't live any longer but are far more likely to die in the ICU, die in the ER, die in a vent and be readmitted with complications. None of which we think are part of a good death, all part of a bad death. Some people may ignore what we tell them. I'm always amazed when I ask people "What have your doctors told you about your illness?" And people say, "Oh, not very much." And I have the little green sheet that I use to discuss their illness with him that says you have lung cancer. Most people pass away within a year from it. And we'll try one or two or three different types of chemotherapy. But at some point, there may not be anything to do after that. And I pull out that green sheet and show it to the person and then "Oh yeah, well maybe you did mention that." I mean it's a lot of easier to just ignore this stuff. So a 1988 study, one third of lung cancer patients thought they were being treated with curative intent when in fact they weren't. And Dr. Mackillop told them so. Head and neck cancer patients 10 years later, exactly the same, and that's about the same now. So we've been using these decision aids--I can't get the mouse to work. Ah, there it is. Okay. So we have done this with 27 different people in a row and I hope to have it online in the next year or so. I've been waiting to see what the reaction has been. ASCO now has these online for lung cancer. I'm really concerned that somebody would hear about it first from an online program and then not have the support that we build into our system. So we made up these decision aids that show with breast cancer fourth line chemotherapy, your chance of being alive at a year is pretty small. You are definitely better with chemotherapy we think, but the big think I want people to note is that 90 out of 100 people have actually passed away in a year and these are real numbers. The chance of the cancer shrinking is about 20 percent, about 30 percent.
If you do it for lung cancer this is the one for third line chemotherapy for lung cancer. Sorry, the arrow, it isn't coming up here very well. But the little green bar is your chance of the cancer shrinking and it's only 2 percent, it's actually zero percent with fourth line chemotherapy, a data form M.D. Anderson here and people are platinum and taxane resistant. What's my chance of cure? Well there isn't a chance of cure. Sounds pretty grim, but then we--the next page on the workbook, are there other issues that I should address at this time? Many people use this time to address a life review, what they've learned during their life that they want to share with their families and planning for events in the future like birthday and weddings. Do you want to make a DVD of yourself while you're still pretty well that you can share with your kids and grand kids? Do you want to write some notes for your kids and grand kids or your kids when they enter high school and college 'cause you might not be here? And it's a horrible thing to have to do with my young woman breast cancer patient, that's my practice, but I've never had a family come back and say that's a terrible thing you did making us write out those notes for my 3 daughters when they would enter high school and college and when they got married. People always come back and say that was one of the best things we did. Because it really crystallized the fact that we had a limited time amount left. And we should really take advantage of everyday, every hour. Some people have addressed spiritual issues and financial issues like a will and advance directives. And if you couldn't speak for yourself, who would you want to make decisions about your care? Again, I'm sorry about the arrow. If your heart stopped beating would you want CPR? Do you want to have hospice involved?
These are difficult issues but they're really important to discuss with your family and health care professionals. This is what I do in my own practice, so I figured if I wrote it down we could test it and see how it worked. And my arrow has disappeared again. Look at the darker purple. People are incredibly optimistic about modern chemotherapy. Maybe chemotherapy at Anderson for metastatic tumors is better than chemotherapy at Massey Cancer Center. But all these patients couldn't be cured. But, you know, over half the people answered yes, can this person be cured, the first purple box there. What's the chance of a person being cured? It's 52 percent. There it is, 52 percent. What's a chance of it shrinking in half? Sixty percent, that's twice as optimistic as it should be. What's the chance of cancer symptoms being helped? Eighty-eight percent, it's really high. And then afterwards it was still about a third of people said what person in this situation could be cured? I'm sorry about those other people, but I'm going to be cured. That's why we go to the track. That's why we do a lot of things in our life. Chance of cure didn't really change, how long does the average person live? It was a little bit more realistic, here it's slightly more realistic. [Inaudible]--we use, we measure their hope. 'Cause I was really worried that by giving people this sort of information it would somehow squash their hope, it didn't change one bit. And surprisingly we didn't see a single bit of distress in these patients. In fact here's their hope scores before and after and they actually slightly went up. First time anybody's done this in adult patients. But it confirms what we know from pediatric oncology that if you sit down with the parents of a desperately ill child and have an open, honest communication, their hope actually increases rather than decreases. None of it's a surprise. So then we asked people, "Well you got through it, do you want to share this information?" The great, great majority of people said of course I'd like to share it. I'd like a copy for my wife, for my spouse, I'd like a copy for my primary care doctor. Only 6 people said no. Most people wanted to share it with everybody. Was this--the blue part, was this patient sheet helpful to you? Twenty-five out of 27 said yes. One person said no, and he wrote bummer.
But he also wrote, "But now that I know this, I'm going to go have a party." [Laughter] "Because what you told me for my advanced metastatic prostate cancer was bad, but it was actually not as bad as I was anticipating." You'd be surprised how grim people can be in their own predictions.
So we're not the only group doing this, it's easier and easier for patients to get honest information about metastatic disease. NCI's cancer.gov there's nothing there. You read about pancreas cancer, 95 percent of people die within the first year of diagnosis with stage 4 pancreas cancer, there is nothing there, nothing to help you with transitions. You look up today, and for breast cancer, it says cure is possible but it's very uncommon and it says the average length to survival is approximately 24 months and the goal is relief of symptoms. This is not on the doctor's part of up to date. This is on the patient's side of up to date. So, people can now get this information free of charge and it's very realistic. I think it's going to help us over time. Let's switch gears and talk a little bit about paradoxes and why we don't bring up the D word which is not Docetaxel or Doxorubicin but death. So 75 patients, consecutive admissions, most with recurrent acute leukemia or lymphoma admitted to our oncology service, 41 percent had an advance directive that no one knew about, paradox number 1. Only 5 of 75 had ever discussed advanced directives with their oncologist, paradox number two and only two times out of 75 had the oncologist brought it up. So we asked people, "Well, would you want to discuss this with your oncologist?" "No." "What was that?" "No, we really--" people didn't want to discuss it with their oncologist. "Would you be willing to discuss this with your admitting doctor?" Eighty-six percent said yes and 95 percent of people thought this was very important to discuss when they are being admitted to the hospital. So, it's really a series of paradoxes that the great majority of people think it's important and they're willing to discuss it with the doctor that they've never met. They don't want to discuss it with the doctor who has been taking care of them and it hasn't been discussed in the clinic. One of the fellows posed a question this morning, say, "When I'm moonlighting at night and the family draws me aside and says, what's happening to my loved one? How can I find out some information? It doesn't seem like she is getting any better, it seems like she's getting worse, how can I help the family bring that up with their attending physician that they may not want to proceed with more chemotherapy because they getting sicker?"
How may of you are oncology nurses? How often does that happen? A lot? Every institution I've worked in, that's paradoxical. So, then we asked people well, of the doctors who take care of you, and we listed their medical oncologist, their surgeon, the radiation therapist, their primary care physician, their gynecologist, oncologist, if you had to, who do you want to discuss this advance directives stuff with? By far, it was their oncologist or their primary care physician. But the oncologist had brought it up only 2 out of 75 times. That's a whole series of paradoxes.
The take home points I'll stress from this, if you're a covering physician, if you're a house staff, if you're an internist, if you're hospitalist, if you're covering someone else's service, the patient may find it much easier to discuss this stuff with you than with the treating oncologist because there is not the baggage. And if you're the oncologist like me, it may be really difficult to discuss this because I know my patient's 37, I know she has three kids, I know she has a liver full of breast cancer that's grown two or three regimens and it's really hard because I know what's going to happen to her. I can either just let it play out until she is too sick to get chemo and then turn to hospice with seven days left to live or I can have that discussion right in the office and a 20-minute visit turns to 45 minutes, she's in tears, I may be in tears. That you're thinking about what's happened to her and what's going to happen to her, it's no wonder why most of us say, "Well the next drug we are going to try is Gemzar." Why we should bring up the D word? Advance directives have never been associated with worse survival in any study, why we don't? This is a fascinating study. It took senior medical students, any medical students here? Senior medical students and randomized them to three groups, their task was to be exposed to 26-year-old woman with an inoperable brain tumor. Most people with that live less than two years and they were randomized to three options. Number one, they could disclose, oh, I'm sorry.
Complete information--thank you. Complete information about the diagnosis, prognosis, and treatment. What we teach to our residents in our mindfulness training is to be present with people, ask reflective questions, think about the effect it has on them, think about the effect it has on you, do a body scan.
Or you could conceal the true diagnosis but still refer the patient for treatment. Say, "We're going to do surgery then you get radiation and chemo." Or you could just do a dietary habits. The people who did this with just the dietary habits, what do you have to eat, there are even exposure to this 26-year-old person, about their same who's going to be dead in two years, lowered their positive affect. And the group that basically concealed the truth, "Here is how we treat it honey." Their affect went down, it came right back up. But look at the group that talked about, "Well you have a brain tumor. It's inoperable. You're going to get sicker. It's not going to be easy. I'll be here for you--we'll be here for you but it's going to be hard on both of us." Look at what happened to their affect. And in fact, it stayed down probably until the end of the week, until the next soccer game. And oncologists sort themselves out into this as well.
Part of the first coping with cancer--cancer study that Holly Prigerson did in-depth interviews of cancer doctors like myself who take care of people who die. And there are 360 patient deaths and they interviewed 15 physicians, and they were quickly able to divide them up into this biomedical group with excellent biomedical care whose role is cure. It's professional. No death is satisfying was a quote that emerged more often than not. When somebody dies, its sadness and relief, but these doctors do not have any clear method or transition, and they don't make any recommendations to help the patient and the family. That's where palliative care comes in because palliative care can takeover that role. There is a biomedical psychosocial group that does the same excellent biomedical care and they see a second primary role of helping patients and families cope. They have strong interpersonal relationships with the family and the quote that came to was, "Yes, her death was an ordeal. But it was really satisfying to help her through the whole process." As opposed to "No death is satisfying. I really screwed up." And we feel we have a responsibility to make recommendations. We learn it by experimentation, reflection, role models. I think you've got one of the best role models here in Dr. Baile and you can do training here. In this case palliative care and oncology could work together.
In this Coping with Cancer, one study of Holly Prigerson's they followed these 360 cancer patients from the time of diagnosis of a disease from which they were going to die, which isn't hard to figure out to when they actually die. And only 37 percent of people could remember having a discussion about dying even though they all died. It's probably a little bit higher than that because this was a two-time question but it's not 100 percent. If you had that discussion you were not more depressed, you were not more worried because I've--I already showed you the--the one reason doctors like me don't have the discussion is we're afraid of taking away people's hope. That seems to be a nonstarter. The other reason we give is "Well, I don't want to make the patient depressed." The data show that if you have the discussion you're no difference in mental health and worry. You're far less likely to want heroic measures, half as likely. You're four percent as likely to undergo ventilation and 27 percent is likely to end up in the ICU, more likely to admit being terminally ill, complete a DNR and use hospice. And this gives the patient and family some opportunity to plan. It also saves a bunch of money. That's not the goal. When I started thinking about palliative care my goal was to improve care of patients. The fact that you can save a little money at it is actually a good thing but absolutely not the primary reason. So there are some triggers that I have rolling in my mind and I'd like to teach our fellows and colleagues when to consult palliative care or think about switching your own hat if you're wearing both those hats.
Anytime a patient has an illness that could be life ending like metastatic breast cancer. Another one is anytime the person's progressed on a line of therapy and you're switching chemos that's a really good mental trigger to check on the chart, is there advance directive discussion held, what's your code status, how much do they want to know, how much do they know, and it's much better to bring it up early. At sometime there may not be any treatment against your cancer. There are still things we can do to help. Please do not say, "Well, I'm sorry but there is nothing more we can do." That just leaves the patient feeling abandoned. And there's almost always something that you can do. It's not necessarily what they want. It's not to be cured. So, you can say "I wish it was different. But we don't have a way to cure your cancer or make it go away. But there are lots of things we can do to keep you up and around for however much time you--you're here." You can use triggers like pain, anytime the performance status changes, any malignant effusion or hypercalcemia. Bisfofonates like Zometa and Pamidronate work really well to treat hypercalcemia of malignancy, but they have not changed the natural history of the disease. That's quiet clear from the randomized trials of them versus the other. People still live about two months from the diagnosis of malignant hypercalcemia, so that's a wonderful trigger to start thinking about planning for hospice. We actually do the palliative performance scale when the survival is short. And again, please not there's nothing more we can do. I do have a palliative care tattoo that says, "Giving up, is what we do best." [Laughter] Just teasing or "Palliative Care the last healthcare professionals you'll ever need."
[ Laughter ]
So, I showed this slide this morning to more medical oncologists and it's fascinating that one of--my wife's favorite poets is a beat poet, John Berryman who wrote that "Most men are sleepwalkers, not evil-doers." [Laughter] And we really, I don't know any oncologists who doesn't think that he or she is doing a pretty good job at this, but it helps to have some external reflection.
So, Doug Blayney who was president of ASCO last year, really good oncologist, went back to the University of Michigan and looked at the number of people who were getting chemotherapy for incurable cancers within two weeks of their death. And he thought it might be 15 percent, it was 50 percent. That's a lot of chemotherapy for people with pancreas cancer, lung cancer, metastatic breast cancer when it's not likely to help very much. I have given chemotherapy to people on Friday and have them die on Sunday. It happens. If it doesn't happen you're not doing your job, you're not giving enough chemotherapy. But to have it happen a lot, means you're giving chemotherapy to people who aren't going to benefit from it. All he did was do the quality oncology practice initiative which measures how your practice performs compared to some institutional norms. And it probably should be about 8 percent, maybe 10 percent and just giving people back that information dropped it from 50 percent to 25 percent in a week, in a week. Just by, "Hey, somebody is looking.
Oh, there's an expert body the ASCO that says, we shouldn't do this. Maybe I should rethink my practice to be judged competent by my peers and hey, somebody is looking and measuring this. And we're trainable and we're educable." If that doesn't work, the NCCN has some useful guidelines and I have printed these out for people. You print out the best cancer ones the colorectal cancer ones, the lung cancer ones, the ones that say when the person has progressed through different lines of therapy it's time to switch. Not three strikes and you're out, but three strikes and you get sent to a different team. You get sent to the bench. Or when the performance status is poor, so you can look these up and print them out for people and say it's not just mean old Tom who's doing this, it's some of the world's best cancer experts including many people from Anderson here. How--how to get these matches across with oncologists, for palliative care doctors we have to let them know what our expectations are. I think, give people real time data compared to their peers.
One of the fascinating studies that I would love to do is with hospices because right now about 35 percent of cancer patients are sent to hospice with less than 7 days to live. The way hospice works in the U.S. it's a--it's a defined Medicare benefit. And the hospice, the people get paid 150 bucks to take care of everything that that person has to be taken care of. So they can't do chemo, they can't do radiation, they can't do transfusions, but if they're spending three days taking care of people they get 450 dollars to take care of all the nursing care and the adjustments and putting the psychologist and the social worker in, it drives my hospice colleagues bonkers and it makes them bankrupt.
They really need to see people with two or three or four weeks to live to get that 150 dollars a day to then pay for appropriate care through the whole course of their illness.
I had a thought earlier this morning that since President Obama signed the Affordable Health Care Act which was passed by Congress but he signed it, that's called Obama Care. Who signed the Medicare Hospice Authorization Act? It was passed by Congress and signed by President Reagan. So if we called Reagan--called hospice "Reagan Care" perhaps it would be more attractive. [Laughter] So I think we've got some rebranding for those of you who are social marketers out there. But it would be wonderful if you got a message back from your hospice colleagues: Dear Tom, thank you for sending us so and so. We've been taking note and your referrals had been coming with seventeen days left to go. Thank you we really appreciate it. Or your referrals have come and the patients take their last breath and then die. And we have scurried around. That's my record actually on our palliative care unit. We had one patient who came in, went through the double doors and went [sound making] and died. That's my record. I would bet if you provided this feedback to doctors that they would actually change their referral patterns. So what--what will that do? Remember that only thirty seven percent of people had that discussion. No difference in health or worry, four percent likely to go under ventilation. That saves a thousand dollars in the last week of care. And that's somewhere between 76 and 300 million dollars that we could save for care that people really don't want if you ask them and use to buy new drugs for bone marrow transplants.
And then Aetna did this interesting program called Compassionate Care since doctors won't tell their patients about what's going to happen to them, they trained their computers to recognize seriously ill cancer patients who are getting palliative chemo and radiation. And then they put their 400 nurse case managers through ELNEC to teach them palliative care, education for--Education Consortium for nursing care at the end of life and then have the nurses call up the people and say, "Oh, we noticed you're being treated for lung cancer and we'd like to offer that you can stick with your regular doctor, Dr. Smith is still your doctor, he'll still get all your chemoradiation et cetera but you can naturally have the [inaudible] hospice work directly with you. And that includes social work, it includes PT, OT, it includes a chaplain and it includes most importantly nurses who can be Dr. Smith's eyes and ears and can come out and check on you and let him know when you're sick, just like regular hospice does. Very few people decline these services. There were a few doctors who were pissed. You told my patient she was going to die? Well, she does have lung cancer metastatic to the brain. People lived just as long. Hospice use doubled. And hospice stays doubled. And the number of inpatient days were reduced substantially. In Medicare it went from 23--it went from 15,000 per 1,000 members hospital days to 2,300. Multiply that times 2,500 dollars a day and you're saving 32 million dollars per 1,000 Medicare age recipients. ICU days went from close to 10,000 down to 11,000.
Anybody worked in a hospice here, with hospice? Yeah. If you have someone you can call and that person can come out and visit you or manage your situation by the phone, you don't end up in the ER, you don't end up admitted to oncology, you don't end up then going to the ICU. And we estimate this would save about 60 million dollars per every 1,000 Medicare members. It's a huge amount of change. So, that may--may be helpful and most insurance companies are rolling out plans to duplicate that in one way or another because they see the handwriting on the wall. They can't continue to charge what their charging. So, for communication, patients generally want to know everything. We often don't tell them everything. Remember to ask permission. What do you want to know? What do you know about your disease? We should but we don't. But they might not want to hear it from their oncologist, but then again, they might. So, for those of you who are covering oncology services or picking up the pieces after the oncologist has left, don't be afraid to ask the person, what do you know about your cancer? What do you want to know about your cancer? And recognize that the patient may be much more comfortable discussing this with somebody that they don't know and haven't charged for taking care of their cancer. When we asked the patients well, why don't you want to discuss this with your oncologist? "I don't want to hurt her feelings." That one's pretty common. "I want her to be treating my disease and saving my life. It would be way too tough on me and her. And again I don't--I want them concentrating on saving my life." And they don't mind talking about it with their oncologist but they're waiting for the oncologist to bring it up. And consultations, insurance companies will be your friend, not really. But insurance companies are changing the markets and the products that they have. So they are recognizing how difficult these discussions are to have, the consequences downstream and so they're putting in place services that will allow people to transition from oncology care alone to oncology care plus hospital care and eventually the hospice care. And all the data suggest that people will live as just as long, if not longer, have better symptom management and oh, by the way, it saves money to have for advances. So with that I will close and I will be happy to ask--answer questions.
[ Applause ]
» So, who might have a question? Maybe I could start it off.
»So we'll let people think about it a second. So I thought it was really interesting that the last piece that you mentioned that out of 70 patients only 16 would want to discuss advanced directives with their oncologist. But what you--in clarifying that, that if I understood correctly, that that number changes if you ask well, would you discuss it if your oncologist brought it up?
»Because I think that's an important piece because I think the support study, one of the messages that people were kinda shocked by is how few patients wanted to talk about resuscitation. But no one asked the follow up question "Well, would you talk about it if your doctor brought it up?" And so it may be the way people are interpreting that particular question, you know, as "Would you want to bring up the discussion with your doctor?" And I'd be sort of interested on your elaborating on that.
»Well, what we found was that point number 1, people thought these discussions were really important but yet they haven't had them or have them documented in the medical record, that's paradox number 1. Number 2 they were happy, maybe that's not the right word, but they were okay with the discussing them with the doctor or nurse whom they've never met before. I worked with Patrick Coin and Mark Bob [phonetic], two of the best advanced practice nurses ever in the world. Pat's an International Pain Expert and it doesn't matter that they're having an advanced directive discussion with a nurse practitioner, it's the fact that somebody's in there, willing to listen, willing to discuss what the patient's goals are. So they're willing to discuss these terrible issues with somebody that they've never met before rather than the person who's been taking care of them. But if you say among your doctors, which ones do you want to discuss this with? It's your medical oncologist hands down which suggest to me as you said people don't want to discuss this but if they had to then they want to discuss it with their medical oncologist. And a few of them said "I just wish they'd brought it up." And we hear that all the time "I wish somebody had brought it up." So, we have to train medical oncologists to bring it up. Right now there aren't any rewards in the system for bringing up this difficult discussion other than feeling good about it. But it's also important for those of you who aren't charged with the day to day oncology care of this particular patient that recognizing you can do it too. And in fact, the patient may be a lot more comfortable having this discussion with Dr. Bruerra [phonetic] from palliative care than they are with me as their leukemia doctor.
»That was really interesting and I see that myself. We do two-week blocks on the oncology service and if I don't know the patients, all I read is--well, she's 43. She's got metastatic pancreatic cancer. It's progressed on Folfirinox. It's progressed on Gemzar. It's progressed on a phase 1 drug. I can walk in and pull up a chair, and say, "What do you want to know about your illness? What do you know about your illness? We need to have a talk about resuscitation." Because I don't know her, and I don't know that she has a 17 year old and a 21 year old, and two dogs and a cat. It's much easier having that discussion with somebody that you don't know very well.
» Are there any questions?
» That, by the way, is not arguing for oncologists not to get involved in the day-to-day lives of their patients because as we we're talking earlier, the whole idea of therapeutic presence and therapeutic listening is probably magnified when you're an oncology doctor. I'm learning this from Dr. Baile this morning.
[ Inaudible Remark ]
» Could you speak then?
» Yeah. These conversations are really, really important, and powerful like in my own practice, I found and you said this yourself about maybe 5 to 10 percent of these conversations really don't go that well. They sort of don't--don't end up in line with being me and the other party who is the family or the patient. So I guess this is kind of a question and a comment. The comment is in my experience is that I shouldn't let that dissuade me from doing this because the 90 percent of the case that's very valuable and it might be valuable in 100 percent. But how do you handle those situations when there's clearly not that connection and the people [inaudible]?
» How do you handle the discussion when people make choices that don't seem right to you as their treating physician? That's, by the way, our new definition of autonomy when the patient and doctor agree [laughter] because in a certain sense, we're holding out this issue of hope about DNR or hope about CPR which probably doesn't exist in the first place. The only way I can suggest is always ask what do you want to know and some people will tell you right upfront, "I don't want to have any of those discussions and I mean I might try once again, but I'm not going to beat my head against the wall." And other people will say, "Well, I'm pretty sure that God has a plan for me or my loved one. And as long as their body is still breathing, God can come down and heal them at any moment." And who am I to say "No, He won't, or no she won't, or if you just prayed harder, none of this would have happened in the first place." [Laughter] None of those answers work. And you have to accept that people have a very different view of medicine and magic, and reality sometimes that we do and it's probably just as valid. It may not be as scientifically valid but it's just valid to them. We've had an anthropologist go in and follow many of us as we've done these conversations and it's fascinating. You can sometimes get to what you want of getting the patient and family agreeing to a DNR. But sometimes that just puts families off so much that they'll tell you the doctors were just so mean and disrespectful that I'm never coming here again. I understand that, you know, mom isn't going to get any better and you think that she's going to be--die in a persistent vegetative state. I don't happen to believe that. But I can't convince you. I'm just never coming here again. And I'm telling all my friends that this is a terrible hospital. So those things happen. People have very different viewpoints about life and death. I have had priests and rabbis tell me that taking somebody off the ventilator is akin to murder even when they had clearly expressed the wish to do that. Probably, other religions too, I guess those are the ones who stick closest to mind. So sometimes it does not always go well.
» But I just wanted to say, however, Danny. In your case, a 90 to 95 percent success rate sounds to me to be pretty good.
[ Laughter ]
» It's sort of like Glenn Gabbard writes about the Perils of Perfectionism. I think he's talking about us.
[ Inaudible Remark ]
» That's right.
» Any other questions?
» I think the [inaudible] oncologists don't bring up the issue of the advanced directives is because they're often not very helpful in the way that which they're written. Most patients when they prepare anadvanced directive are preparing it with the concept that if they become intubated and the situation is hopeless that they would be in agreement to being taken off of life support. And that's a reasonable advanced directive for the majority of healthy people. But for a cancer patient, our challenge is to get--is to have them think about not being intubated, not being in the ICU, and accepting a different way of dying. And so, you know, having advanced directive that's written in the way in which most of them are written just isn't helpful. It doesn't--it doesn't take away your need to have that more difficult conversation which is that we will not intubate you. And so I think that's the difficulty that we have.
» That is an excellent point and I couldn't agree more. And that's what the--this camp study of--in Can Corp's for lung cancer patients found exactly so that sometimes we have--even the DNR discussion or the advanced directive discussion, and it just partly clarifies one little bit, that there are so many more opportunities to take. What I use the advanced medical directive discussion for is a window in. If you don't start somewhere, you're not going to start. So you can start with the DNR discussion, but then say, you know, put the script in the brain and have some triggers in the brain. Okay, I've discussed DNR. There are some other things we should talk about at this point too 'cause that's not the most important. The most important is: How do you want to spend the rest of the time that you're going to be on this earth? Let's think about that. What's important to you? What are your goals? And I don't have a good advanced direct--that's not in most advanced directive language. So I would agree with you that the advance directive is unsatisfying, it doesn't often tell you what--what you really want to discuss but it's a great starting point. The other part about advanced directives is most hospitals require that you have some discussion. So you can always tell the person "Well, I don't like to do this. But it's really important when you're in the hospital to have some discussion about how you would feel about advanced life support. You know, I'm in there with you. I don't like to do this either, but let's discuss it and it's really part and parcel of being in a hospital according to current law." Or I'm willing--these discussions are so difficult to have. I'm willing to use any sort of right, legal argument I can to get me to discuss it.
» Other questions? Well, thank you, thank you very much Tom.
» Thank you.
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