Patients and Families Facing End of Life Video Transcript

Achieving Communication Excellence (ACE) Lecture Series
Dr. Eduardo Bruera
Patients and Families Facing End of Life
Date: April 6, 2010
Time: 53:10

Eduardo Bruera, M.D.
Chair
Palliative Care and Rehabilitation Medicine
The University of Texas MD Anderson Cancer Center

 

Dr. Baile: Thank you for coming to this A.C.E. lecture which is Achieving Communication Excellence sponsored by the Program for Interpersonal Communication and Relationship Enhancement. I'm Walter Baile, Director of the Program and I'm gratified to see so many people turned out for this topic. Sorry we ran out of food and next time we'll do a better job. As you know that the purse strings were recently released for providing food so we're a little rusty about estimating how many people might come. But it's my great pleasure today to present Dr. Eduardo Bruera who will be giving today's talks on patients and families dealing with the end of life: a very timely topic. And just a little bit of background about Eduardo -- and maybe that's a reminder to me. If you could put your cell phones and pagers on silent so that -- we know people may have to take pagers. There are phones just outside the door. But Eduardo received his medical degree in 1979 and trained in medical oncology in Argentina. In '84 he joined the Cross Cancer Institute and University of Alberta in Edmonton and he worked there until 1999 to develop the Division of Palliative Care Medicine and Edmonton Regional Palliative Care Program. And then he came to MD Anderson where he currently holds the F. T. McGraw Chair in the treatment of cancer and Chair of the Department of Palliative Care and Rehabilitation Medicine.

Dr. Bruera's research interests are in cancer pain, cachexia, fatigue, delirium communication and outcomes in palliative care research. And he's quite a prolific investigator and writer holding 3 NCI NIH RO1s and conducting numerous clinical trials which in symptom management and palliative care which have resulted in over 700 papers, abstracts and book chapters. And he's still young enough probably to have a couple of hundred more in him I would imagine. So [laughter] he's been really interested in the development of palliative care programs internationally, particularly in the development world. And one aspect of I think his career is he's trained really hundreds of young physicians in the area of palliative care to go back to their home country and establish programs where there was little or nothing in pain management and palliative care. And I think it's really important to mention that his international recognition that he's received numerous awards including the Lane Adams Quality of Life Award in 2006 and the American Association of Hospice and Palliative Medicine's Lifetime Achievement Award in 2010. He was also honored by the Canadian Society of Palliative Care Physicians with the establishment of the Eduardo Bruera Award as a career award for palliative care specialist. So we'd like to welcome Eduardo and thank you for agreeing to give this talk for which there will be nursing CE, CME, and Social Work Credit.

[ Applause ]

Dr. Bruera: Thanks very much Walter for this wonderful introduction that I just wrote for you a couple of minutes ago.

[ Laughter ]

And I am delighted to be here to be able to talk about issues that are important to all of us in the care of our patients daily here Anderson. I'm going to see if I can get my presentation up. Yes, great. So basically one of our challenges is brought by this patient who had carcinoma of the prostate with considerable amount of weight loss, some bony pain, profound fatigue, and some anxiety and depression and a considerable amount of distress associated with what the future brings to him and his family. And I bring these important issues for consideration of all of us because the problems in our patients come as packages. There will be multiple problems and those will come together causing significant problems for our thinking, our relating and the families of our patients will take the brunt of their care. So when this patient in the middle of that family gets sick, we have a challenge to serve the whole family structure. So our care essentially is family care and as patients face end of life, the brunt of the hit is going to go on that family.

Now why do we need to address these issues? Well the questions about quality of life achieved in the hospital can not be compared with the quality of life at home. We need to challenge that concept ourselves too about why are patients going home? Why are we sending them home? And where are we sending our patients when there is limited amount of resources, limited family, limited money? So that's a dangerous territory when we're facing end of life. And there are a number of questions that we pose to ourselves. Investigational therapy with palliative care versus palliative care alone. Home versus institution, fear, symptoms, communication, advance directives. Now facing end of life is an important issue. One in 3 of you are going to be diagnosed with cancer. And of those of you who are diagnosed, approximately half are going to go ahead and die of your cancer. I'm saying 1 in 3 of you and not 1 in 3 of us because I am a medical oncologist here. I'm not going to get cancer obviously.

[ Laughter ]

But the reality is that denial only helps so much and then the other half of you that are not going to die of the cancer are also going to die. So Walter wanted to have this on a very high note to kind of enthuse the participants. But the idea is that this is an issue that touches our patients and families and each of us and each of our families on a regular basis. And how are we addressing the problems that are brought to us by the disease? I saw a couple of weeks ago this patient with disseminated small cell lung cancer to liver and bone progressive disease, failure to second line treatment, low -- very low abdomen pain and fatigue. But in addition to that, it took me some time to learn that he was a 43 year old restaurant manager, had 4 young kids, was worried about monies for the spouse, dreams of his own restaurant, education of his kids and his relationship with God. And then all of that was the same person that was a disease perspective that I was confronting and there was an illness perspective. And basically a lot of what we talk about and a lot of what supportive and palliative care is about is about understanding and helping the illness perspective that our patients bring to us in addition to their disease.

So we just finished talking to patients coming to our center about spirituality and we were just shocked. They never expected to see that 90 something percent of the patients consider themselves religious and spiritual and the intensity from zero to 10 of that feeling was incredibly high. But we also felt of great interest that almost 40 percent of them felt that they were in some level of spiritual pain: that their spirituality to some of them was also a source of distress. And those who expressed spiritual pain had some differences. They felt that the spiritual pain was aggravating their physical symptoms and their emotional symptoms much more than those who did not express spiritual pain. Those who expressed spiritual pain had worse depression, anxiety, drowsiness. They had scores of moods that were worse and their quality of life overall was worse than those who were not expressing spiritual pain.

So basically we learned that when our patients and families have to make decisions and cope, they do it with cognitive issues and with emotional issues. They need to learn things about their disease, about their treatment, about the problems that might happen, but that clearly is not enough. Not different from the way we make decisions about holidays, education, relationships. The cognitive aspect is enormously impacted by our emotional approach to that. So part of the way we talk to our patients and families is through a combination of education for the cognitive and counseling for the emotional. And that's basically the daily work. That's what we do everyday. We have aspects of education and aspects of counseling. In communication we talk. We have our spiels. And they need to be good. They need to be short. They need to be disciplined. We need to know exactly how to say things in a way that they empower that patient and that family. And in the counseling part, of course counseling is listening, but to be able to listen we need to ask because if we just listen -- and my dentist frequently listens to me talk about soccer. And he listens and listens and the reason why I'm talking to him and Leslie is because I don't want to deal with the painful issue of the root canal he's going to have to do in 10 minutes. So there is a moment in which he needs to say, "Shut up Eduardo. I hear what you're saying, but now we're going to move into the other aspect." And part of the challenge for us is to provide the education and to provide the counseling in a way that really helps our patients. So the next couple of minutes I'm going to spend some time talking about some of those issues.

These are the issues that our patients bring to us almost daily. And these last 3, they don't bring but we need to bring up because they're so common, so important and also so counterintuitive. So these are the questions that we face on a daily basis in our different centers. And "How long do I have?" We're able to say extremely well at 5 years with minimal error and we use some information to do that. At 3 months, the error increases dramatically. And there are other components that have influence on what is happening to our patients and families at that point. So we are much less able to be predictive. However, prognosis is one of the big 3 medical functions with diagnosis and therapeutics. So we need to say something about prognosis. We need to address it and it's an enormous worry for our patients, our families, our health care system. Eighty percent of us hate uncertainty. Twenty percent of us like uncertainty. Some people don't want to know the gender of the baby. Some people - 80 percent of us - do want. And that way uncertainty can be adaptive to some of us who say "I don't want to know," but 80 percent of us feel uncertainty highly distressing. Our tools for prognostication of survival have a 30 percent plus error. That means they're not good enough for us to rely on them, to inform. And our clinical judgment overestimates survival. Whenever we see a patient and we feel how long that person might live, we're usually overestimating their likelihood of survival by about 30 percent.

Now some people are giving a percentage based survival. In your situation, 5 percent of people would be alive. Some people are giving a time based survival. It would be 2 to 4 weeks. The problem with that is that we just don't have the information to be good to our patients in discussing that and they're both frail with error. So what do we say? Well the first thing is "Cancer causes death by complications rather than direct tumor growth." And this is very important because many times we hear a patient come to us and say, "Doctor, but I only have disease in the bones, so why am I so ill? I do not have disease in organs that are so important." And patients very frequently do not understand that cancer kills through complications: sepsis, embolism, cardiovascular problems, metabolic abnormalities. So part of our education is how we die of cancer. There are also concerns about why are we not ordering more blood work or x-rays to figure out exactly their prognosis? And it's because we are not able - no matter how well we understand tumor mass at a given time and some co-morbidities - to predict through these tests, survival.

Cancer location is not a good predictor and we try to give a very wide margin: not a matter of hours to days, but not likely several weeks and we try to avoid the number. Because we can give a caveat and the caveat can be 5 minutes long, about why this has 30-40 percent chance of being wrong and things happened before and things happen after and has happened to us many, many, many times. Years, and years, and years ago when we're talking to a patient and a family and we gave the long caveat and we could hear the family - the patient phoning the family - and after having discussed the caveat for about 5 minutes and said, "But it could be less than 6 months," they grab the phone and said, "The doctor said 6 months," done.

[ Laughter ]

So the problem with a number is that the caveat has a trend to be deleted very rapidly and then families plan enormous staying altogether around the patient. That leads to illness, loss of jobs, not being able to stay at the moment the patient dies or wait until the time comes when they can take their leave and be here only to find that the patient dies before that moment. So avoiding the number is important but then you say, "Well what do we recommend?" Conversations, decisions, paperwork: if you do them now, you take a big weight off your shoulders. You relieve yourself and your family from pressures by deciding everything from the will to funeral to discussions to reconciliations: all those stocks. And finally, plan for long ride and short term. Take turns: put some kind of a schedule on the fridge. See who's going to do Tuesday, someone who's going to be shopping, and try to plan long term because that is going to be much more adaptive than having everybody plan for a shorter period. The second question is. "Why and when supportive and palliative care?" And we have thought about this: a lot of philosophical thought and we read a lot of stuff that 90 percent of the time we just couldn't understand. So we came up with something that we understand to be more -- they are the goals of CAR. Not the goals of CARE but the goals of CAR. And basically, we tell that when you buy a car, you're really going to go on trips, get to work, but bad things happen. Now my fellow is Canadian and he didn't want to put another event that is the car gets stolen in Houston sometimes.

[ Laughter ]

But he -- that doesn't happen in Canada so he just didn't acknowledge that. So, occasionally bad things happen. Now you can be full of optimism and say "Nothing's going to happen. I don't need insurance. I don't need a seatbelt. Why should I?" These are our goals of CAR. Well that would be considered not very realistic. The same outcomes are expected but you acknowledge that sometimes things don't go well and you have plans to address it. It might make the final goal more fun. It's more fun going to the trip to the sea if you know that if things go bad, you do have your insurance with you. And if an 18-wheeler is half asleep and hits you from the side, you do have your seatbelt. So bad things can happen in your goals of achieving great results from your cancer treatment. You might choose to say, "Nothing is going to happen," and do no plans and take no care of these things. "That is not very realistic and you don't buy a car that way Mr. Smith." You really don't do that when you buy your car or when you plan your trip. So having ways of addressing things that might not go well can enhance your goals. It can be a way of working on both ends simultaneously to enhance your trip rather than making it an alternative.

"How will the person die?" We need to discuss if there's going to be decreased function and awareness, that there will be respiratory noises in 70 percent of us, and not swallowing the phlegm because we can't swallow anymore will lead to a little bit of secretion noises. That doesn't mean the person is choking to death. It just means that the windpipe is not as smooth as it should be and you have a little bit of rattling noise. There's also a dangling vocal cord in some of us in which each time the air comes out, the dangling vocal cord makes "Ah, ah." And I sometimes have to get the family to put the telephone on the patient to let me know if it's secretions or if it's the dangling vocal cord to reassure them that that has no meaning. That's the air coming out through a weak vocal cord making a noise during aspiration. That's going to happen to the majority of us and if we empower people, that helps a lot. We can control symptoms. We need to discuss delirium. And we need to normalize the end of life in our patients and families to make them feel comfortable because these are a terrible stressor for them. They're not used to it. They want to know what do they say or what do they do? They need to know that they have to provide some physical care because of what we said before. There's going to be less function. There's going to be need to provide care for the mouth, elimination, medications, keeping conversations short is very important to avoid tiredness, keeping visits short and not requesting from the patient active participation. Just being and accompanying and not making it too long. And then distract the patient. Get out. Go places that are fun. Enjoy. That's a good part of the care schedule and we try to encourage some of those issues.

Now our spiel on cachexia is important because this is a major issue. All our social events are based on food. A lot of our religious rituals are based on food. So the fear that mom, dad, my spouse is starving to death, is always there. And we need to explain that the factory goes on strike. So it doesn't matter how much wood you bring to the lot, when the factory's on strike it's not going to make more furniture. So pumping large amounts of fat and protein and sugar on the patient is not going to result in the factory - the metabolic factory - being able to use it to make the muscle and the cells that are necessary. It's important to relieve the concern that the person is starving to death. Basically the social value of the meal is very important. If it becomes a struggle because the family serves a huge plate and then they're all looking to see if the patient is eating or is not eating, and likes the food or not, they destroy the most valuable moment in the day. So restoring the social value of the meal even if the patient is just going to sip a couple of things is of great value to them and it helps them cope. Eighty-five percent of us are going to have brain failure before we die. And in about 80 percent of us, our brain works to stop us from saying or doing stupid things. In some of us, it works better than others.

[ Laughter ]

I've been accused very strongly of having only about 40 percent of my brain doing that.

[ Laughter ]

But global brain dysfunction will cause initially disinhibition. And this is a source of enormous distress for our patients and families because they will express the symptoms. So a 3-year old hitting the knee on the supermarket will cry and shout and make all kind of noises and in 3 minutes will be playing comfortably. When I am this age now, if I fall on the floor the [inaudible] input into my somatosensory cortex would be identical to the one I had when I was 3 years old.

Now you will not see me shouting and screaming and crying on the floor there because I am able to inhibit it. I will say, "Well, it's kind of an embarrassment, all these colleagues out there. And I know it's going to get better. I better wait until I get to the bathroom. I will shout there."

[ Laughter ]

And basically that is very important for our families to understand about what delirium does to the inhibition of symptom expression because otherwise that face, that moaning, of the person I love, it's very distressing to them. They say, "I know my dad would not do these faces and these shouts if he was not in terrible agony." I don't know if that makes sense. It's that expression that becomes extremely distressing to them. The same thing happens with emotions. "I want to go home right now!" "Well but you have the IV and you have this tube." "Traitors! You're abandoning me here." This inhibition of emotions brings tremendous concern and guilt on the family unless they understand that this inhibition, it's brought on by delirium. So unfortunately, if we don't explain them this they will not understand very well what they are seeing. And sometimes their attitude will be to talk Dad down. Grab them and talk them and stimulate -- that only brings delirium worse so avoiding unnecessary stimulation is another very useful way of helping.

And then we need to discuss function. When we discuss, "Oh the person still needs a little bit of work because the person is still a one person assist or a two person assist can't go home yet." That's not very reasonable because very few of us really die standing up preparing meals, you know?

[ Laughter ]

I was cooking, I was driving and I died. It does happen but you'll agree with me that it's not that common. So when we discharge a patient, we need to prepare the patient and family for becoming completely bedridden. That's part of the plan and that's part of what we need to normalize. Of course the better function we have for as long as possible, it's wonderful. But our planning needs to consider that becoming bedridden is going to happen and is going to happen soon. The bathroom, the bed, the disabled placard, and the wheelchair are huge issues to be discussed. They're empowering them to display a better autonomy. I mean we explain it the way it is, they are empowering them. Rather than signs of illness, they're signs of being able to do more and function better.

But they are distressing: transportation to the hospital and normalization of these events. The family conference is particularly important because it allows us to sometimes split for education and counseling, hand free telephone participation of those who can not make it, and a semi structure approach. That means there are things that we know need to be addressed. We must address them even if the family doesn't ask because the family doesn't know what we need to educate them about. But then the semi is because there are issues that are very special to that particular family and patient, and we need to give room for them to bring those issues that are very close to them.

Now with regards to counseling, these are some open ended questions that hopefully allow patients to bring up issues. And we need to keep exploring with more questions. The counseling is very simple. If people express their distress, they feel relieved. They are building pus inside. They're building suffering and frustration. Get it out. Have a good expression. Have a good cry and you will feel better from it. So the problem is it takes our fellows about 45 minutes -- Dr. Patel who works with me has become much faster. It takes him about 39 minutes.

[ Laughter ]

But it takes our faculty about 8 minutes because it takes some time to understand how to ask the question that will get to the point that needs to be addressed. We can talk baseball. There's nothing wrong with that. For me there is because I know nothing about baseball. I know about soccer but nobody knows about soccer, so the reality is we're having a communication problem in content there. But there's nothing wrong with talking about things but that is not counseling because that is not what is causing their pain. So gently moving our patients to the area where it hurts so they can express their distress, that's part of our task so that we can listen to them. Now our team does counseling. Family members and close friends, mutual protection and that doesn't work as well. You need someone who's not directly related to be able to do this work. It's not what you're going to tell them. It's what they're going to tell you. So after their expression, the supportive part can be anything you think that is nice. Of course you can't turn out and say, "Okay, get out now." No, that's not nice. But whatever you say after, doesn't have to be very philosophical. It is what they told you that has this enormous amount of expression.

Our team uses a lot of our disciplines and it's crucial to the success of supporting these very distressed patients and families. You have them all here at Anderson so you can take advantage of these wonderful professionals that are surrounding you. Now listening can be difficult so we need to know how to listen and we need to understand that that release is what is making our patients feel better. It is the expression of their distress, what is having an enormous effect in relieving the suffering. So bringing it up is success: it's not defeat. We're winning rather than losing by having our patient express that. It's not intuitive to our families and we need to explain because other ones they said, "Doctor, you made her cry." And in reality you allowed her to cry. And that brought relief. But it needs to be addressed.

At Anderson, we have the center, the unit and the mobile teams and our center basically does not only the care of the patients who show up but usually also follows up on the telephone and basically would try to provide an alternative to the emergency room as much as possible for the patients that we already have contact with. And all the patients undergo psychosocial and physical assessment. We evaluate their needs and we document their distress. We have no waiting room because there's a lot of patients who have difficulty walking in so the looks to us are important. Getting the patient into a safe place where other members of the team can go in and visit with them rather than them going to visit the members of our team. We visit them. These are the signs we have because our patients frequently come in wheelchairs and this is our music. We're a music based center so people shop about 8 to 10 percent more if you have music so we decided...

[ Laughter ]

...you know, we might have more shoppers around if we -- our acute palliative care unit has a 75 percent discharge alive rate. Most of our patients stay there. We succeed in controlling their distress and they move on to the community or to further treatment. And it prevents sometimes ICU mortality and that is something that we enjoy doing very much. We face patients who have difficulty with function and with distress and we emphasize their distress and their function. The patient had great difficulty making it to the daughter's wedding and so Dad and Mom and the couple decided that the way the wedding could happen is in the unit. So basically, there's Steve our chaplain who's very tall we couldn't...

[ Laughter ]

...we couldn't make him disappear. He was fighting, struggling to appear in the photo. And there he is.

[ Laughter ]

And basically this is an outcome that is successful: an outcome that makes us feel that we are doing something that is good. We have a very open concept of family and family comes in different colors and shapes. This is the type of family I enjoy. Some of you enjoy this horrible type of family.

[ Laughter ]

And we respect that we need to be open about these issues so we accept those too. And here you have our team and there we are an inpatient music unit too because that way you'll shop 8 percent [inaudible] for us if we have music for you. The outcomes: in this case, the outcome was the wedding of the patient. The outcomes are multiple and we believe that the outcomes are measured in the way you cope with something that will happen to a hundred percent of us and a hundred percent of our families. The way we cope with the end of our lives and the way we make meaningful, everyday, every moment and we avoid the unnecessary suffering of dying. We don't turn dying into a picnic. And no matter what we say we can not do that because death is a terrible time for all of us. But there's a lot of unnecessary suffering associated with it. And that's what we focus on. The solo practice makes the oncologist have to do this, but also have to do this. And it's tough. It's tough because it's not easy work to do. The congress approach will have you consult a whole bunch of disciplines when the patient comes in. And there are some limitations to that, that are related to imagining if dialog between 2 is difficult, when you have dialog between 14 people out there it becomes quite difficult. The model we built over many years has been a model of working together with our primary teams: with your teams in the care of these patients. And also, when the patients facing end of life need help from other groups those groups are there. And we work with them very closely too.

So in general, we're very grateful for the opportunity to treat these patients and their families. We feel this is a very rewarding practice. It's a practice in which we make a difference in many aspects of their lives. And talking to the patients and families is not that difficult for us but it requires a little bit of training about how to talk, how to educate and how to listen. And we're open here not only for you to take advantage of us to help you but if you want to come and do it with us and then get some expertise to apply in your centers, we'd be delighted to that. I want to express my gratefulness to Walter and the I-Care Program for the work they do in helping all of us communicate better in all stages of the disease because I think the results of our communication efforts are already working. And because it's working, it's making our lives a little bit easier too. Thank you very much.

Dr. Baile: So this isn't working. So we have some time for questions and if anyone has any soccer questions, we would also entertain them.

[ Laughter ]

But we have 10 or 15 minutes for questions from the floor.

Dr. Bruera: Walter suggested that if there were no questions or comments, I could repeat my presentation so some of you might want to...

[ Laughter ]

Dr. Baile: There's a question -- first up there please? Is that Dr. Ramondetta

[ Inaudible audience question ]

Dr. Baile: So the question, the question, I'm just going to repeat it is that what is the physician's role - is that right - or the team's role at the end of life in helping patients along their spiritual journey and is...

[ Inaudible audience question ]

Dr. Baile: And is also growth possible at the end of life I think is another...

Dr. Bruera: Thanks very much and that's a very important question. What we think is the following: there's a couple of things we need to be aware of. One of them is that at the end of life, spirituality plays a big role. It may not have played the same role for these same patients 10 or 15 years ago or 5 years ago, but now as the disease advances spirituality is a huge component for our patients and families. The role of the physician or other members of the team that are not the chaplain is as much as possible to allow the patient to express if spirituality and/or religion because the vast majority of our patients equate them that this -- for us we may have a different definition. Our patients overwhelmingly feel it's the same thing if it does play a major role in their lives. From there on there's 2 things. If a patient is feeling miserable and is not improving, if the pain is bad, the sadness is bad, the depression is bad, we need to suspect that there might be spiritual unveiled issues that might be part of that suffering experience. And then we might head on bring it up to them, anything about what might happen after you die, anything about your relationship with God or your spiritual issues and take it from there. And then depending on how comfortable the physician is, counsel or ask a - you know - a chaplain to help.

In the case of our team with Steve, we do take advantage of him. The same thing happens with other areas of counseling. Some of us are more helpful than others to the patient in areas of somatization, chemical coping, etcetera so I would say Lois that it depends very much on how comfortable we feel. There's no doubt that 3 things that help our patients cope with the end of their lives are family, money and religion. And in palliative care we are limited because we can not give those 3 to the patient. We can not find them a family no matter how Carmella tries. She really goes around asking for -- "I would like to find a mother or a sibling" but she just has difficulty doing that. Also, Chantal, Carmella and Debra work very hard to find the patients money but that isn't easy. And if the patient does not have the background of spirituality it's also difficult. But if they have it then we can really help them take advantage of those resources. And that perhaps is our challenge. Know that they are there and then see if we can help them take advantage.

Dr. Baile: As just an addendum to that question, I wonder how often you see families do unfinished business at the end of their life like reconciling with people. Because you read a lot about that: reconciling with family members who've been estranged or sort of approaching issues that they haven't approached before. Is that something that you see very often if -- while they still have their cognitive abilities?

Dr. Bruera: This is a wonderful point because it gets very much to how we die and in general the point is very well taken. The vast majority of us die the way we lived. So basically we do not really dramatically change. I mean there are cases where a patient gets diagnosed with advanced cancer and basically they break with their current lifestyle. They sell their property, they buy the sailboat and they go off to [inaudible]. And when that happens, remember I'm an academic, what do I do about it? I publish it of course.

[ Laughter ]

But the reality is it is not the way we cope near the end of life. Overwhelmingly we live the way we lived. So in moments of terrible stressors, it brings a lot of things that are difficult on all of us. So occasionally we might bring reconciliations but also we might need to be careful with setting ourselves for goals that are a bit too high. And organizing a truce around a dying person, generating a common spirit of helping the dying person might be a very reasonable goal to achieve in moments of great distress. So it does happen but we need to also understand that if you remember the picture we showed, those are the circumstances of our patient and we need to get goals that are a bit more you know attuned to their reality.

Dr. Baile: So how do we prepare patients for their eventual death and maybe it becomes more salient when we diagnose patients who have a very bad disease at the time of presentation? Is that what you were getting at also?

Dr. Bruera: Yeah. I think this is a wonderful point that you're bringing because sometimes there's a belief that you have to maintain a potentially hopeful attitude. That is again is you know "Buy that nice, new Chevy and make sure that you're optimistic about it and please don't wear your seatbelt. Don't buy insurance. Don't be stupid. That was a loser. That's defeatist." Your patient would look at you saying, "Hey Doc, do you think that's a realistic way of buying a Chevy?" So when we have a serious illness like cancer and we walk into a cancer center, it's very hard to avoid having thoughts about things might not go the way we want. They might not go well when we buy a Chevy but they might not go very well when we get a cancer. So this is a great opportunity to empower people to say, "We're going to work hard on the Plan A. And we're all going to join you on that one. But we have a Plan B also for you. And that means this is the way we deal with a car accident, with a stolen car, with the unsafe trip, etcetera." So I would say that the alternative can be planned jointly so that you can take advantage of both at the same time. That's usually what we do because very frequently we get patients sent to our supportive care center who are coming for example for Phase I or for secondary treatments, and they're goofing and they're feeling reasonably well. And that's the way we start working with them because their prognosis is not good but their present is quite good. I don't know if that makes sense. The question is, is related to vegetarian cuisine. No?

[ Laughter ]

No, no. The question was related to the increased level of control our patients want to have about their end of their lives and basically how do we address discussions with our patients who want to take their lives or who have suicidal ideation, etcetera. And partially I think the point is important because if we are asked, perhaps we are healthcare professionals but if we get people 2 blocks from here in a fast food restaurant and ask them, "If tomorrow you got advanced cancer, and were not able to work, were not able to drive your car, were not able to draw an income and had to take pills," the answer and we have done it and others have done it, 66 percent of us would say, "I don't want to live like that. I want to end my life in those circumstances." The patients we see at MD Anderson and the patients we see in other cancer centers do not request the end of their lives that frequently. It's actually about less than 5 percent of our patient population. So what is the difference because these people we see here, 2 years ago were eating at that restaurant? And now they're here and they're having a different type of request. Well part of that has to do with the way we adapt to major losses. So the way we envisioned ourselves and our quality of life 2 years ago when we were here, we could not find possible meaning in lots of things associated with our lives because we were busy working, having a life, doing things. As the disease happens, other things start to take value. I don't know if that makes sense. And so the quest becomes much less. Some of us will want to die but that not only happens because we have the cancer. It happens because if you can imagine Donald Trump - the guy with the funny hair and the helicopter - one day having to come to work with my 1999 Honda and take care of my kids, he would probably want to end his life too at the beginning.

[ Laughter ]

And I can understand it. But I am not that unhappy and I postulate that Donald Trump, given enough time, might cope a little bit better. So we stay with them. We support them. We accompany them. And many of them learn to cope with that disease. Some of them will not. There is suicide among our cancer patients. It's about double the rate among the normal population. It's not a huge number but it's a higher number. The numbers in Oregon where the assisted suicide legislation is present have been consistently a very, very small amount of the patients who are given the opportunity or who even take the medication suggesting that probably [inaudible] was reasonably right. That is the knowledge that I can finish my life is what sometimes helps me put on with bad situations. And when I had a flat tire at 3 o'clock in the morning coming from the hospital with 25 below in Edmonton one day, I had that feeling. I said, "If I throw myself under that 18 wheeler, it's all over. I'm free." That helped me change the tire and keep going. So there's something regarding that level of control that can be actually adaptive rather than maladaptive and can help us cope with horrible situations understanding it. Fortunately it is not a common problem at the end of life and you're not likely to have that problem on a consistent basis. It's an unusual problem. It can be distressing to our healthcare professionals. It can cause suffering to us. So if that happens, it's good that you get some help to support those patients and families.

Dr. Baile: I just wanted to mention that in Edmonton, the government gives out AAA cards in addition to health insurance.

[ Laughter ]

Dr. Bruera: Yes, if the patient or the family would request their attending doctor to call for a consult, we will see them anywhere where they are while they're inpatients. So or, if while they're inpatients they say, "Once I get out of here I would like to go to the outpatient center." They can arrange that too. So from the perspective of access, that is possible both in the inpatient setting and the in the outpatient setting. With regards to the bus rounds, we do it once a month and we spend half a day going to the community. We see a patient in a home or in a nursing home and then we go back to the bus. And in the bus we have a special headphone system. We discuss everything we've seen and done on the way to the next home. And we have a combination of people from the community and people from MD Anderson so we work together with the hospices in the Houston area to discuss difficult problems that they might encounter. So it's an opportunity to mutually learn from each other what they're doing in the community, what we're doing and to work together.

Yeah, well there could be. There could be options. We don't encounter that difficulty very often but there might be situations as you say Carol in which they might have to address with a patient advocate what their problems are and see what type of help are they not getting that they would like to get. Fortunately, it's not a common -- we're not aware that this is a very common phenomenon. But occasionally you have communication problems. That might be what's causing some difficulties.

Dr. Baile: For those of you who really want to get a flavor of what patients and families not only struggle with but how they come together at the end of life and what one can do for them, the bus rounds are absolutely fabulous because you actually go to people's houses and see patients on their deathbed. And you see courage. You see moving emotional experience. It's very, very powerful and I'd recommend it to anyone who wants to learn more about end of life and how patients experience end of life struggles.

Dr. Bruera: Yes, the question is how do you define unnecessary suffering? And basically well the question about what is unnecessary suffering, in 89 or 90 percent of the cases you can find out that there are unknown issues that can be addressed. For example, misinterpretation about what happens at the end of life. Misinterpretation about what you are seeing in your loved one. Misunderstandings about the resources that are present to you.

Misunderstanding about what cachexia, delirium and end of life is. And sometimes lack of access to ways of expressing your distress. So those are areas where unnecessary suffering is occurring. And they can be addressed quite successfully. There are still existential issues that are "Why me? Why did I have to get a cancer? And why did I have to die? And why did I have to die now?" And what we can say about that is the moment we have succeeded at getting you talk about them, you are achieving relief of that suffering. So we are now getting to those very important issues for you. The suffering that we all experience and we all will experience near the end of our lives is probably into our DNA. We probably have it from the moment we were little geckos and basically it stayed with us. So it will always be with us and that's why it's impossible to say that there will be no suffering. We do not fall in the trap of those little parking signs that said no pain because we felt that they didn't make sense. If I hit myself here there's pain. What do I call no pain? I don't know if that makes sense. So saying that you're not going to have suffering makes no sense because it is part of life that the end of our lives will be associated with suffering. But we identify multiple, multiple areas where this can be relieved quite dramatically. But it will always be hard.

Dr. Baile: I think one thing I wanted to ask you is that you talked about you know listening but preceding the listening by asking a question. And I wanted to pick up on that and say you know, a question such as, "What kind of things are you most concerned about" may really open the door to a patient talking about either physical suffering, mental suffering, existential suffering, etcetera. Would you agree with that?

Dr. Bruera: Part of our job is to find out what is suffering for that 43 year old man? Was it the dream of the restaurant, the future of the 4 kids, the spousal difficulties, the spiritual issues that were coming to him, or was it the pain, fatigue and everything else? So 90 percent of supporting patients and families is assessment: is finding out what the suffering is for them. And then we might find out that a lot of that can be relieved quite well and some of that can not be relieved quite well.

[ Inaudible audience response ]

Dr. Baile: So for some people, suffering may be redemptive but I think that that is not an excuse for neglecting suffering and folks. Well thank you very much Eduardo for a wonderful presentation.

[ Applause ]

Dr. Bruera: Thank you.