Walter Baile, M.D., Robert Buckman, M.D., Ph.D., William Hurt and Megan Cole
The University of Texas M. D. Anderson Cancer Center
Dr. Baile: I'm Walter Baile.
Dr. Buckman: I'm Robert Buckman.
Dr. Baile: And together with Megan Cole and William Hurt, we're very pleased to welcome you to this rather unusual project. With Megan Cole, several of us at M. D. Anderson Cancer Center, set up a series of focus groups with faculty members and fellows talking about what it means to be an Oncologist.
Dr. Buckman: The groups discussed the personal aspects of what being an Oncologist actually means, the demands, the burdens, the rewards, the emotional costs, and other topics. Then we edited those discussions, and Megan Cole and William Hurt kindly agreed to present excerpts. So what you're going to see are selections of the words each one originally contributed by a different person at the focus groups, now spoken by Megan and William.
Dr. Baile: We think you'll find the result extremely thoughtful and thought provoking. And we hope it will trigger several, even many discussions and perspectives.
Dr. Buckman: The topics that you will see discussed here are almost certainly things that you've experienced or felt yourself, but perhaps these topics have never really been discussed openly before. We all hope that you'll find the results stimulating and helpful.
William Hurt: It's four in the afternoon and I'm supposed to take my daughter to her soccer game, but I'm four hours behind and I'm not going to make it. Or my kid's sitting in school, and I was suppose to pick him up, but I'm not going to be able to get there, and then, I'm angry with myself, the place, the schedule, and everybody else. I'm going to get home and then I'm still angry with the place and the patients' schedules.
Megan Cole: I think one of the hardest challenges of this work is time pressures. You know, where we think we know what we should do with each patient. And the problem is we have to see three of them at one time, three patients at one time. And that creates quite a bit of stress and difficulty, at least for myself.
William Hurt: I see a lot of patients and I start at seven in the morning. I go until nine or ten at night, basically without a break. The frustrating part about clinic is not seeing the patients long enough. That's what irritating.
Megan Cole: It's much more draining in many ways time wise for me as well as for others on the staff having to spend a lot more time with these patients who are having trouble accepting that they're dying. It's psychologically draining. I feel guilty or, you know, I, I feel worse that I can't help them because they feel so bad. I feel like I'm not adequately treating the patient.
William Hurt: My wife finally made me start bringing a can of Ensure to the clinic which is with my lunch, because I never use to eat lunch before. And I'm too old to do 7 a.m. to 9 p.m., but I go non stop from eight to six, and I'm constantly behind. And I'm constantly pressured by being behind. There are pressures. There's an external pressure.
Megan Cole: After the kids get to bed then I worry about the patients.
William Hurt: I'll never forget this conversation I had with this man. He was in his late 40's. I was on the head and neck rotation. The tumors are disfiguring. They're painful. The treatments are horrifying. We were seeing this man who had a large tumor, and the radiation oncologist and the ENT folks talked to him about surgery and he said, no. Did you go into your little doctor's bag? Are you afraid of surgery? Most of these people, they're not wimps. And he said, "Well, the ENT surgeon told me that if I have surgery, I'd have to have a tracheotomy and we live on a lake and every night I go fishing with my son. And if I have a tracheotomy, I wouldn't be able to go fishing anymore because if I fell in the lake, I'd drown. So I can't not take my boy fishing every night." And I thought my God, you know, this is this little piece of somebody's life that just escaped, and it humbles you. You sort of sit there and you realize the treatment of this man is not just this thing. It's him as a father, it's his son, it's his family, and that's the humbling part of working with people and recommending treatments.
Megan Cole: Yeah, your understanding and knowledge of your patient, I mean, not just as a prostate cancer patient, but as Mr. Jones began a long time ago. You know, when you first walked in that door and said, "Hi, I'm Dr. So and So." So that you know you have some sense of what the conflicts are for that patient.
William Hurt: When I was student I had no idea how to talk to people about medicine. I'd worked as a dishwasher, worked as a cook. I know how to talk to people out there, but I had no idea how to talk to people about medicine. What I did was I, I watched this one guy who was really considered to be a top-notch doctor. All the doctors sent their families to him and I went and I followed him around, after hours, every night, watched him do consults. And from him I learned how to sit down and look at them in the eye, how to treat elderly people who were real frail, gently talked to them sweetly, and he became my mentor. So I learned a lot of things just by watching what he did. Not that I wouldn't have learned them eventually, but certainly a role model like that was helpful to me. To this day he's my role model.
Megan Cole: Uncertainness is a part of medicine and I think it's the hardest part between doctors and patients because patients want some kind of certainty. They don't like all the uncertainty that exists. Well, in this one case, basically, and it turned out that the patient had an advanced tumor, and really the decision was chemotherapy or nothing at all and I felt strongly that it was a personal decision. And the odds of chemotherapy even prolonging her life were slim, but this woman would not make a decision. And there was a language barrier, and the daughters were translating, but I could not get her to understand that the decision was hers. And that if she chose not to decide, I was not going to give her chemo and she never decided. I actually visited her and she was already in Hospice. This was last month. It was really tough. It was fear. I, it was, I think denial more then anything, and she'd never made decisions. You know her husband, her kids, her whole life, she had never made any decisions. So this was not out of character and I stopped badgering her because I knew she wasn't going to decide.
If you know them for years, you can sit down with them and look into their eyes and they look into yours and they trust you. And that's very different from the patient who's admitted for vague abdominal pain. And you get the CT; you can see peritoneal carcinomatosis all over the place. And you walk into the room, and you know what they're thinking, what does the CT show. And you have to sit down and say, "I'm really sorry, I just met you, and I'm not quite sure how to say this, but the CT is very abnormal." And there's no way that you can say or do. Nothing you can say or do that's going to ease the pain of that person in that moment of time, neither theirs nor yours.
William Hurt: Suffering is to me not just their physical pain. It's a threat to the integrity of the human being. So when a doctor has to go in and tell people bad news, those people are suffering. Even though they might not be hurting physically, or not need a narcotic, or other thing, that's suffering.
Megan Cole: One of the worst moments for me as a doctor is when I get the chest X-ray, which says multiple pulmonary mets. They don't even know I suspected that. Most of the patients that I treat, that's the indication, that the likelihood of the patient's survival is miniscule. So I feel like I'm the first person who gets this bad news and I've got to do something with it. And frequently the patient might not get it immediately. It's such a shock. And I find that that's a bad moment for me.
William Hurt: My sister's fiancé was seen by a doctor and he told him he had papilla edema and that means two or three things. It's a very short list in a young person and she asked me what it means and I said, "Well, let's wait until we get some tests back because the list includes a kind of a brain tumor." I knew that was very likely what he had. My sister was very anxious to hear the results of the MRI. So I called and got the results of the MRI. So I'm sitting there with the results and then I thought, now what do I do. Like my sister said later" There's no nice way to say brain tumor." I told them because I felt like the information was known, and I couldn't say" I don't know what it says. You have to wait until Thursday."
Megan Cole: In the United States, about 99.9% of people want things detailed, but there are some who don't. There's some who say "Doc, doc, you do the best by me. You do what you're going to do, but I really don't want to hear the details of this. You can tell my family." I'm sure everyone has encountered that kind of patient and are you obliged to force the truth on them? And in the case of procedures are risky things. Hey, you have to give them enough for them to understand to get a feeling that they understand the difficulty of it.
William Hurt: People know when they're being lied to. I know when I'm being lied to. The moment you lie to a patient, even if they don't know it right away, pretty soon they figure it out, and you're toast.
Megan Cole: You're toast. Medicine is a lot different now than it was twenty, thirty years ago and generally, that sort of grunting behavior doesn't fly very well anymore. You know, patients would accept their surgeons in the seventies, early eighties, saying "You've got cancer, I'm taking it out, and just trust me on this one." Now, if you go in and say "Well, we took it out," next thing you hear is someone calling you because you did not communicate enough with this patient, because now they're coming out with these Internet printouts. They've read the last five articles that you've written. They've checked you out on several sources. These are very highly educated patients and they're not going to be patronized.
William Hurt: If I'm pretty blunt and they're still not hearing it, I figure it's because they're not ready for it. It's not because I'm not telling them appropriately. Maybe they're just not ready to hear it. You know and usually they just need time to come to it on their own terms. They don't have to come to terms with it all at once.
Megan Cole: Well, doctors are very checklist oriented. Now I do, and live by the breaking bad news technology. I do, I've got a checklist in my mind right now. I kind of knew it but it helps me to see it written down, because I'll be standing there at the bedside and I'll think, oh, oh, yeah, and I need to sit down now, little things in my checklist.
William Hurt: There are family members, too, who have wishes that are very discordant to the patient. And especially if they are the primary caregiver of the patient, it makes it a very, it's a difficult situation. The family member comes before you see the patient and says "Don't tell my mother if she has cancer. It'll kill her." You have to work through that.
Megan Cole: Well, all I want to point out is that sometimes full disclosure is painful. And that "do no harm" is firmly embedded in us. And there's all that psychic trauma.
William Hurt: I deal with that by asking the patient if we can have a family conference. If everybody's in the same room at the same time, everybody hears the same message. And I have a chance to correct, answer questions.
Megan Cole: If the family says you can't tell the patient, you must ask the patient. My family standard answer is "We'll try, but why don't we ask the patient what they want to know." So while they're all there together, I'll say to the patient "What questions do you have? What do you want to know?" And if the patient asks questions like, "Am I going to die?" or "How long do I have to live?" well, you give a sympathetic look to the family members and say "This is what they want to know" and you can answer.
William Hurt: If the patients themselves say "I don't want to know," I don't think it's my right to force them to hear.
Megan Cole: Anger, that's my worst fear. It is.
William Hurt: Well, yeah.
Megan Cole: Because I feel so much at a loss, you know. And you know that they're not angry at you, but it's so hard. There is nothing more frustrating than dealing with someone who resents you when you're working so hard for them. I mean it is so hard to just take a step back and remove yourself. That's the hardest part to deal with. The only thing that I've found this year that has helped me is to recognize that most people who are angry are really scared.
William Hurt: I had a patient with leukemia, who was a doctor, and just finished his residency a year ago. He had a two-year old. He was just paying back his medical school loans. His insurance wasn't going to pay everything. He's got acute leukemia and he was incredibly angry and hostile, and it was horrible because he was a physician. So one day I ended up spending an afternoon with him and it was just like, you know, you know, I'd be nuts too. After that, he just, he just wasn't angry anymore. I never felt scared to see him anymore.
Megan Cole: You know, with this one man's beef is, was about, was with his permission. The physician gave information to the man's disability insurance company and now the company is saying, hey, hey, these papers are good. The doctor says you're not disabled and so this man is very angry because we've said he's well. You know, he wants us to bend the truth a little and I said, that we couldn't do that. So at one point, he literally lunged at me. Yeah, he probably would have beaten me up if this patient advocate hadn't intervened and stood between us. I didn't react angrily; I was just frightened. I've never been physically threatened by anyone before.
William Hurt: I got back to my office and I saw a phone message from this patient. I know I probably shouldn't answer this call right then. I just finished seeing about sixty patients in clinic and I said, "Okay, I'm setting myself up." I just have to try to be empathic and it was a total disaster. He got on the phone and basically says a couple of things and I was not in a mood to hear them. We just lashed back and forth at other which is the worst thing that that could ever happen. I had to deal with it, but I didn't do well that day and I knew that was going to happen which left me very, very, angry with myself after I hung up.
Megan Cole: Well, you can't just say "Excuse me a moment, I'm going to pull out my little intern guide and decide which pathway I'm going to take." You know when somebody's angry in your face, you don't have time to say "Let's see if this is pathway A or pathway B."
William Hurt: You can say "I'm sorry," but you need a plan.
Megan Cole: But first, you have to acknowledge that they have a right to be angry.
William Hurt: The second piece is what they want more then anything in the world is your, your good graces. They need you, and they know that and the first thing that comes up with their anger is what's going to get in the way of their relationship with you and that's not healthy for them. So I acknowledge that the anger is appropriate and correct, but it's not helping. So together let's direct it where it needs to go and like the whole thing accelerated when I told them "I'm, I'm very concerned about your husband." When this happens, the reality is that we are very good at keeping people alive, but at restoring life to people we're not so good. And I was very concerned that he was not going to survive the night and their reaction was "How? We brought him to the number one hospital. What you're telling me simply cannot be, because this is the best hospital in the world" and you're left almost indefensible. And so we say, well, are they right, why am I here at 3 a.m. with them and there's a good chance that he may die.
Megan Cole: I think that there's always hope. I tell patients there's always hope. And yeah, I think there's probably more despair then patients are willing to convey and that physicians are ready to recognize because it's a low, low thing to be in a situation where this person is in true despair and you don't have the kind of tools to help them emotionally. So I think there is more of it, than both sides are willing to admit, but I also think that there is always hope. And I think it's important that patients and families understand that.
William Hurt: I'm usually pretty blunt. There are occasions when they're already asking questions that I can't answer because I don't have all the information, and sometimes, they'll hold on to the smallest little piece of hope. And I don't like to reinforce this by saying, "Well, maybe, you're going to die of this." I know they're going to die of it. At the same time, I don't want to leave them without hope. You have to be very honest because it's very important for people to get their lives in order if that's the message you're going to convey.
Megan Cole: What is false hope? Hope is an instinct. It's a spirit. It's something soulful. Some people might argue that that's false, but I don't believe that. And that doesn't mean that you can't separate being hopeful and being honest because I think that the two can partner with one another and you have to, because you can't be one without the other, I don't think.
William Hurt: I think all of our patients are in a certain amount of despair, but what has always been of interest to me is how well they camouflage it. To me, I guess I would associate this despair with no hope and I think that, that people in this institution starting with the doctors, but including everyone, if there's one thing they concentrate on, it's not robbing people of hope without giving false promises.
Megan Cole: This is exactly the issue that's difficult and you know that you have to learn it from experience and in one form or another live it because you get into these situations if you want to or not. And you somehow have to create this internal barrier to be able to deal with it, but it doesn't mean you don't have a sympathetic empathy. I mean, you see that is the issue. What is the emotional involvement, and how do you deal with it, and how can you separate it so that you can walk away from the situation without being destroyed? That's the most crucial thing that you have to train people how to deal with and you cannot tell them how to do it. They have to find out themselves, because there is no way that you can teach somebody that part.
William Hurt: Well, I think the line is a fine one. I think perhaps we sense it when we've started to get perhaps a little too personally involved with somebody. In,some patient situations, we realize all of a sudden, that the patient has become more of a friend or family member than a patient. I let myself do that. I think most of us put up some barriers to protect against that happening on a routine basis because it can be very draining. I mean a lot of our, a lot of our patients don't do well; and we're not immune in any respect from loss. And if we're constantly losing friends, it's going to make burnout even more likely. Speaking for myself, I have erected barriers so it doesn't happen very often, but I've made some very close friends. I've vacationed at their home and done things with them. I made a friend years ago; a patient with metastasized renal cell carcinoma. I mean, you know, how smart is that?
Megan Cole: That's not smart.
William Hurt: But it's good. I guess I try to get as attached as I can without compromising my honesty and judgment whatever that means. I don't know. That's the kind of person I am. I try and get personally involved with my patients because I think I can accomplish a lot more.
Megan Cole: I'm getting better at it and I'm a lot better than when I first got here, but I still do struggle with should I never be friends with a patient. That's not right.
William Hurt: What you say is extremely important, but your life as a person outside of medicine impacts how you try to be with people and that's extremely important for communication. Actually, studies have been done to show that medical students interact best with patients. Interns do worse. Residents do even worse and fellows worse still.
Megan Cole: A lot of those studies are flawed, incredibly flawed.
William Hurt: Well, I'm not sure that's true. What I'm trying to get at is that this interpersonal relationship is beat out of us with the education of medicine. The thirty-year-old, he just got married two years ago, that is going to lose his rectum and probably be dead in five years, it's not easy to tell someone that. You tell him. It doesn't mean that I don't feel bad about it. I drive home. I feel just awful about it and then you find out the guy has lung Mets and I feel terrible about it. And that's why I don't get close to patients.
Megan Cole: I try not to take patient care work home. I take other work home. I want to go home and forget about my miserable day because most of the time there's been some kind of bad news.
William Hurt: Usually when I go home, I get attacked by the dogs, kids, turtle, anything that moves.
Megan Cole: Yes, there is an extra challenge being a woman, the demands of being both caregiver at home and for your patient. But there are differences from being a wife and a mother as opposed to husband and father as the children have different demands on me than they have on their father.
William Hurt: Do you start distancing yourself when they start dying? That's not the way to treat friends. So you just have to accept the fact that there are cases where you're going to get hurt. You learn to protect yourself some, but there are always going to be people who you let in and you're always going to get hurt from time to time. I think that's true.
Megan Cole: My first two patients as a medical student died and they were very much my patients and I wasn't the resident, I wasn't the fellow, but I was the doctor. Yeah, I went to this hospital and the big surgeons said, "Okay, medical student, she is your patient." And so she had surgery and she died, my patient. And I had a medical rotation at the same hospital and they said, "Okay, okay, we'll make it easy for you, this young man just has a bit of flu, but because he has a rheumatic fever, we'll bring him in for a couple of days." And he died on me within twenty-four hours. There was nothing I could do about it. It was terrible. It wasn't my fault. It just happened and I was totally not prepared and it was awful.
William Hurt: In my arena it's common to have people whom you cared for a long time leave for whatever reason. Usually it's death related to the disease. And I'm a person who likes people. I enjoy visiting with them. I get to know them very well as human beings. It's a constant loss and sometimes they seem to come in bunches. You have to have some sort of way to deal with that some kind of outside interest or outside focus. Some kind of belief system that helps you deal with it. Loss is a big issue.
Megan Cole: The reality that patients die creates an emotion, a kind of emotional tension. It's always there. Am I comfortable with it? It depends on the circumstances. If it's a patient I've taken care of for years, we've gone down the path together. There is a concept of a good death. The family was there. If they did it the way that they wanted then I feel fairly good about that. When in situations where the entire family is agitated, like the five daughters show up and they want to know why you don't do a lung transplant, etcetera, etcetera, that, that makes me uncomfortable.
William Hurt: I can separate out when somebody is dying because there's nothing I can do about that. I remember one patient I had, he had a kidney tumor. He had a solitary kidney. And I did a very, very, challenging procedure and got a very, very, good result. We removed all of the tumor. We saved the function of the kidney and he did not have to go on dialysis until four-years later when he had a recurrence. And faculty knew that I could not have performed the operation any better, but you know most of us torture ourselves over these things. I was telling the patient that I wish it hadn't recurred and now we're going to have to take your kidney out and ... you'll have to go on dialysis and I felt terrible. And he said "Yeah, but God you gave me four-and-a half years."
Megan Cole: I don't think medical school prepares you for this at all. I remember very vividly. I'll never forget this as long as I live. The first time I had to cope with death, the patient's wife comforted me... Obviously, no one had taught me how to do it and she knew I was having a problem. It happened to be a minister that passed away so she was a minister's wife. She knew and she was helping me. I don't think you can train for this until you've been through it. I would never have thought that it was too painful to tell a patient that I've had to do this too many times this week. I'm too tired, etcetera, etcetera. This little bell goes off in my head and I realize that one thing is going to lead to another and boom, it's going to be another loss. So it's really my pain and then I have to be more even more sensitive to myself when I say what I'm saying.
William Hurt: Well, you know, what I mean is something that's not medicine related so I have my hobbies. It's a little different than some peoples' hobbies, but that's when I do my hobbies because when I'm doing my hobbies if I'm not focused completely and exclusively on that, it could be dangerous for me. So, so I do, I pick a hobby like that.
Megan Cole: For me, I think it's better not being on service because then there's a time to rest from the experience and that gives me this emotional energy to be completely committed when I am on the floor. For me, that's, well, that's more helpful and it makes it easier. It also makes me not have guilt when you go to a meeting. If you don't have a gun pointed at your head that you need to get right back.
William Hurt: You remember when you were talking about the lounge?
Megan Cole: Yes.
William Hurt: We do. We jump around from thing to thing. It's crazy all day long. We do need a lounge where we can go and maybe have some food, a chair, message board.
Megan Cole: We do need a lounge.
William Hurt: Yeah, we do. We need a lounge.
Megan Cole: We need a lounge.
William Hurt: We need a lounge and an exercise room.
Megan Cole: You know earlier in my career when I saw pulmonary mets, I wondered if I'd done something wrong. Had I made an error in my treatment plan that caused this? But now that I've practiced for a while, I've come to realize that if I'm struggling hard, it's because it is hard. And it's not easy to know what to do. It's not just black and white. And I've learned to separate over the years my responsibility from the pulmonary mets. And so while I'm very pained by it now, I don't feel like I failed. It makes it a lot easier to survive.
William Hurt: Fortunately, there are enough people around. I have one person, at least, in each discipline. There are people that I trust to whom you can say "Did I screw up?" And they'll give you an honest opinion.
Megan Cole: My husband and I have a rule that when we go on vacation, the beeper does not go with us. It's our time together and patients will have to be taken care of by someone else.
William Hurt: The only way I can get a break is to get out of town and to go away for a few days. It's one or two days before you realize that everyone in the world doesn't always think about cancer.
Megan Cole: Well, for me, to be married to someone who isn't medical, who just hugs me, and says "I know it's hard." That's what I need.
Dr. Baile: All of us who have been involved in the project particularly William and Megan hope that what you've seen and heard has triggered something in the way you think about your job. No one ever went into oncology because they thought it would be easy, but as you've been hearing, it's often much harder then you could of imagined.
Dr. Buckman: We all hope that this program has helped crystallize some of the biggest problem areas in cancer care and perhaps stimulated some ideas and strategies in reducing them. If these scenarios and the accompanying workbook have at least achieved some of that, then I think we can all feel that this project has been worthwhile.
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