Antonella Surbone,M.D., Ph.D, F.A.C.P.
Professor of Medicine
New York University
Lecturer on moral philosophy and bioethics
University of Rome and Turin, Italy
Good afternoon everyone and welcome to our second lecture in our series on Achieving Communication Excellence. I'm Walter Baile and I'm the Director of the I*CARE program which is Interpersonal Communication and Relationship Enhancement, in the Department of Faculty Development at M. D. Anderson which is sponsoring the talks. Just a few little announcements, first is that we're offering CME and CNE credits for the lecture today. So, be sure to swipe your card so you get credit for being here. And one thing that's really enormously helpful to us is that when you fill out the evaluations, it gives us a sense of what you like about the lecture or what we could improve with our setting and gives us some feedback about your opinion on the lecture series. And the other thing is that I wanted to announce that our program has launched a Web site called www.mdanderson.org/I*CARE , and on that website you'll find communication videos and other material which are geared toward helping practitioners to be more effective communicators. So, we have some brochures around which we'll hand out at the end of the talk today.
So without further ado, I'm really pleased today to introduce a good friend and scholar, Dr. Antonella Surbone. Dr. Surbone was trained in radiation therapy and medical oncology at the National Tumor Institute in Milano, Italy, and then at the National Cancer Institute in Bethesda, Maryland. And after her training, she served on the faculty of Cornell Medical School and Memorial Sloan-Kettering Cancer Center in New York City. And of course in her spare time, she managed to obtain a PhD in Philosophy at Fordham University. So she is very well schooled and it was a very busy time. Subsequently, she was head of the teaching, training, and development department of the European School of Oncology in Milano, Italy which was responsible for organizing educational programs on oncology topics throughout Europe.
So, she is very, very well versed on this topic of cultural communication with cancer patients today which she's going to talk. She's currently a Professor of Medicine at New York University in New York City and lecturer in moral philosophy and bioethics at the University of Rome in Turin in Italy. She serves on the ASCO ethics and education committees, and she has been--she was the team leader of that group in 2006. For those of you who have done any kind of publication search on her, you will find out she has written extensively in the field of medical oncology and bioethics focusing on a number of issues such as the doctor-patient relationship, truth telling, cultural competence, the social implications of genetic testing, error disclosure, and the ethics of clinical trials in the elderly. So I'm sure we're going to have an extremely informative and interesting talk today. Antonella, thank you.
Thank you Walter, Professor Baile. Thanks to all of you for being here. Thanks to M. D. Anderson. And if I had any tranquility, the introduction took it away. So now I'm really scared. You are, you know you have the honor to be working at an institution that is so important throughout the world and all of the publications that come out of this institution really--are really helpful for oncologists and for patients as well and for anyone working in oncology. So, it is with great humility that I talk in front of you. I'm going to be basically sharing what is mostly my personal experience of cultural diversity moving and practicing medicine in different cultures and what I've learned from meeting patients of different cultures. And I certainly don't wish to give anyone any prescription. I don't think that I have any special position to do that. It's just an attempt to share some thoughts and I hope that you will find them somehow interesting and I look forward to the discussion part of it.
I'm going to start with a little bit of a theoretical background but I'll be brief on this. There are many definitions of culture. Of course they come mostly from the anthropological sociological literature, and some also are from the medical literature. And it's said that culture is sum of the integrated patterns of knowledge, beliefs, and behaviors of a given community. This is a definition that was given by Dr. Charles Olweny in a paper he wrote on Cross-Cultural issues: The Inner Research in Developing Countries as a Canadian oncologist. And then we know that what really happens is that members of a certain culture, it’s like they share thoughts, they share communication styles, ways of interacting, views of roles and relationships, values, practices, customs, that is what makes up a culture. Now a wonderful definition of culture is the one that says that culture places us in a web of significance. At first when I first heard it, I thought it was a little bit abstract and then I really learned through my own life that on the contrary, this is really what culture means. And I'll start by giving you a little story that comes from my own experience which, by the way, is a story of a mistake that I made in cross-cultural communication.
And just to tell you about this web of significance. I had a patient who was very, very dear to me and she came from an Islamic culture. She lived in Europe. She was a very well read person, spoke many different languages, and she was initially treated for a cancer which was supposed to have a good prognosis. On the contrary, unfortunately, she had a relapse after 2 or 3 years and her metastatic disease was sort of taking over very, very suddenly almost all of her organs. And I had had a long relationship with her. She used to come monthly with her family members. I never actually met the male members of the family. It was always female members of her family. At the time when she had the relapse, we always had very open communication but she, herself, not the family, she did tell me that she didn't want to know any details about her prognosis, about really what the test results were. She just said "I know that the cancer is back. Just help, you know, help me out. Do give me the information that is needed but this is as much as I want to know, and I trust you." And then the family, of course, came in separately and they asked me not to talk to her about it and I told them its okay because she has asked me that.
So, I feel comfortable respecting, entirely respecting this. Now, of course, when you work as an oncologist, and we all know it, your patients, unfortunately, are very sick of many complications, of many issues. So, it's not like you work in isolation. You don't have that exclusive relationship. One thing about cancer care is that patients are subjected to multiple patient-physician interactions, the consultant, the fellows at the various levels and so I always put a great effort along with my team. And so I'm talking about myself, but of course that was the team working. We put a lot of effort in making sure that this patient would never be approached abruptly by anyone else and if there was a consultation, we made sure that we would inform them of the communication situation. And everything sort of, you know, she was very sick but she went alright up until one time when she had to be hospitalized. And all of a sudden, she among other things, she also suffers some degree, mild degree of cardiac problems, possibly a toxicity, combination of toxicity and other issues. And one day on a Saturday, her family sort of intervened and they decided that they wanted to send her for a heart transplant. And because they sort of had the possibility to, you know, to search for a heart transplant, I was informed by one of the nurses working with me. I ran, you know, I sort of thought, what was happening here, this is a disaster.
I mean she doesn't need a transplant. This has nothing to do with it. And so I ran up to her room and on that evening, this is the part about the web of significance, I had been invited to a dinner at the Italian embassy. You have to know that in my country, when you go to formal events like this, you dress up very colorful. Except on that occasion, there was a new ambassador and the new ambassador had requested that it would be a black event to show the acculturation to New York style. And so I was wearing a black dress which was very culturally deserving to me going to the Italian embassy. So I did decide that I was going to skip my dinner and talk to my patient. And I had this very long conversation with her where I had to tell her among a tremendous amount of details that she didn't know because I had to explain to her why a heart transplant was not an option for her. And she listened to me silently, and at the end of my conversation where I tried to be as delicate as possible but I realized I was all of a sudden opening up, you know, a whole world of things that she didn't know about. She looked at me and said, "Doctor, you wear black today. I don't like you in black." And these were the last words that I heard from that patient. And in the following days, we had, you know, managed to communicate.
It was always through the family but I realized that by trying to respect her values and by really not placing enough value on really cherishing and fostering her capacity, her ability to be autonomous and the fact that she would have been able to withstand way more information than I had been giving her. And I had really made a major mistake and this story of the black dress and all of these different meanings of this "black" sort of became for me a symbol of what the web of significance means and of how difficult it actually is. And so we know that culture, there are many factors that contribute to cultures and we also know that on top of the classical ones, we have age, we have religion, we have gender, we have sexual orientation. For instance we have occupation and we have disabilities. So culture is not just what was before in the definition. What culture does is that it provides us with a framework for interpreting the word and relating to it as I was trying to tell you in the clinical example I gave you before. But also the one thing that culture really does is that it acts like a facilitator at difficult times in our lives so that we, when we--it's easier.
I was saying this in the past few days in talking with many of you that it's so easy to be cosmopolitan and to be citizens of the world when everything sort of goes well. In the moment when something happens, there is a trial in life and of course cancer is such a major trial in the life of a person. Then you tend to rely more on your culture, on your identity and on that web of significance. And what we need to do in my opinion, and we could end up here, is just consider that, you know, for cancer patients, we--communication, it's all about just trying to make sense of--and helping make sense of their suffering, of the loss of control that comes with the cancer, of the uncertainties that accompany the illness, and realize that culture has a major place in this making sense. Now, just a quick overview of what cross-cultural differences have to do with health and illness. They do affect our perceptions of disease, disabling, and suffering. I'm sorry I have to sort of rush through it so--but I'm sure you know, we all know what this means. They do affect the degrees and the expression of concerns.
Think about, you know, the certain cultures and certain individuals who react with silence to a bad news and others who cry and others who get very, you know, may get very emotional or may get very angry. So--and also the degree of expression is actually mediated through culture. We know as oncologists that, you know, cross-cultural differences contribute--you know, coupled with some ethnic differences and we all know that is very--you know, there is a lot of debate on whether ethnicity in itself is a real concern with any scientific background but they do affect responses to treatments. We know that sometimes when we give even, you know, simple chemotherapy like adjuvant chemotherapy like CMF to breast cancer patients, Asian patients tend to lose hair much more than white women and this is just something to do with their metabolism being different and things like this.
We do know that culture--cross-cultural differences affect the styles of relationships to individual health care professionals. Culture and cultural competency, in my opinion should never be about stereotyping and making generalizations. It's actually the opposite. But, there are some differences among cultures and there are many studies that show this. You have for instance the, you know, the Anglo-American culture where the patients tend to say come alone to visit with their doctors mostly during their first visit with their doctor, very often they come alone and they want an interaction with the doctor with a high level of parity. And then you have some other cultures like the Latino culture or Mediterranean cultures like mine, where on the contrary the patient really looks for a more paternalistic approach in the patient-doctor relationship. I learned through my experience and through reading that in eastern European countries, there is a much more technical approach. You go to the doctor, want to get an answer on something, and so this is also affected by culture.
Of course, the approach is to the institution and health care system now. Here I just want to say something and I have been speaking with so many of you involved in thinking of cancer as a global--a global health problem and in addressing disparities and in addressing differences, not just cultural differences but disparities in treatment and a diversity and so we all know, and you certainly know this probably better than I do, that when we talk about the approaches to institution and we think about cultures, we also have to think that cultures also mean the history of people. So, it is no wonder that some, that for instance African-Americans, may have less trust in the patient-doctor relationship or there are studies, as you know, that show that preferences towards end of life, there are more preferences in African-Americans towards not signing DNR forms.
Why is this? Because culture and the history, you know, history of being discriminated, of having been abused. That certainly comes to play into the approach that you have to the institution and to the health care system itself. Now, definitely cultures affect the locus of decision making whether it is the patient alone or it is the family making the decision where it's a member of the family that varies with cultures. And then they affect attitudes, and attitudes toward the degrees and the modalities of information but also towards many other aspects of cancer care, prevention, and screening, research, and clinical trials, end of life decisions.
Now of course, all of these, what does it do? It's very overwhelming after you think about this and you hear it and it really makes you feel like, well you know, this is a real--there are real issues here. And I think that there are some basic questions that arise and sooner or later in our practices in our life, in our reaction to things that we hear about not just in medicine and it just--well we know that there is cultural pluralism. It's the reality of our societies becoming more and more real worldwide. So, can there be mutual understanding in spite of diversity? And another question is, is cultural relativism an ethical justification, can we just stop it--the point of saying, okay, there are different cultures so everyone has a right in its own and this is the end of it?
This is, I think especially to us working with cancer patients and for cancer patients and it's something very, you know, we think about it and maybe we don't, you know, we don't phrase it this way but we all think about it. And then we ask ourselves, are there human--universal human values that are beyond cultural variable norms? And I think that my personal answer has been that cultural pluralism should not and does not lead to theoretical relativism and there--and then down to pessimism and then ending up into skepticism. It doesn't have to do that. It doesn't do that. Quite the contrary, you can truly live it and it is the way it is as something that adds to our common moral value and we do have common moral values of dignity. You have respect of rights to life, of rights to be treated medically in an appropriate way. They just add a historical perspective and a very concrete contextual dimension. So I think that in the end, the message of cultural difference is a positive message, and if we live it this way, that is how we can actually face it in a better way and in the--and so at the end, again one could finish here, but they’ve got to have a few more minutes.
This is all just the art of caring and this is supposed to be one of--actually is a pre-Roman tomb and it is said that this is one of the very first works of art depicting the therapeutic relationship. So after all, it's just the art of caring and in view of something that enriches it which is cultural diversity. So, what is the role of culture though in oncology? I spoke about this already and I'm going to concentrate mostly on truth telling information and communication now for once because I'm here giving this lecture as part of Walter Baile's program, and I wish to take this occasion to thank him personally because what he's done for oncologists worldwide is amazing and I know it from what he's been able to do in Italy and the way that he teaches communication and communication skills and the way that he is able to approach it from all possible dimensions and yet with a simplicity which is the simplicity of science. You know, science is about simplicity and it is not about complexity--its complex, but it's about simplicity. It's tremendous, so a personal thank you and really heartfelt thanks.
Now, one thing that has been widely reported is that of course cross-cultural encounters are increasing not just in United States but certainly in United States that they give rise to bedside misunderstandings and to ethical dilemmas which are in most cases based actually on miscommunication. So it is like communication is the leading threat throughout. And of course we know that cultural factors affect disparities in access to cancer care and research for minority and under privileged patients. We also know that today because of the fact that we live in a functionally shrinking world--oh, this is a very fancy expression just to say that, because of globalization, we do have global communications. We have global economic problems. We have global environmental problems. We have major demographic shifts, so the world is sort of functionally shrinking, and in a sense this sort of, in fact, erases cultural identity, makes us much more, you know, homogeneous.
But this is actually not completely true. It sort of shifts cultural identity from one where the classical categories, where do you live geographically, what's your ethnicity, to other issues such as for instance the age of--belonging to an age group, so generational differences or geographic differences more in the sense of the differences between someone living in an urban context versus a rural context. Some of the work that has been done, some of the best work that's been done in cultural diversity and cultural competence from the group of Marjorie Kagawa-Singer and--who published that paper in JAMA in 2001 that I was showing before, and is one of the--truly the--the very--the first and then the very best papers on this subject and she was--they were noticing how, you know, the age of being an elderly cancer patient was sort of across cultures. So, this is the shift of cultural identities now. One thing we have to realize is that we always--we, we, all of us, we all belong simultaneously to different cultures.
You know, I'm Italian, was born in Italy but I'm also a physician. I already, you know, and each one of you has their sort of--and it's not--some people call these subcultures which I think is really not just diminishing but it's really wrong. These are different cultures and by belonging to the culture of professionals in oncology, we do have certain things that make us--that gives another culture to ours and it's different from that of our patients. And I'll just give you an example of what I'm trying to say here of course, you know, it's very clear but if you--are not--I mean I'm sure you all have paid attention to the fact that when the doctors are speaking, you talk about truth telling. When the patients are speaking, you talk about the illness narrative.
This is what being, belonging to a different culture, you know, being the culture of the doctors. We speak of truth telling, our patients narrate their illness. It's very, very interesting. So medicine is a culture and the one thing also that is very important is that we all get to the encounter with our physicians and/or as physicians with our patients bringing ourselves. It's a human relationship and therefore culture is involved in every patient-doctor relationship even when they're not cross-cultural diversities or discordance between the--between the people involved in the relationship. So, what cultural differences do is that they act to the complexity of this patient-doctor and so using--I'm using the word patient by and I mean, you know, oncology professional relationship which is inevitably an asymmetric relationship because it is born out of the need and the vulnerability of the patient who is in need for the expertise and the knowledge of the physician.
So this is an asymmetric relationship. And cultural differences may render it more complex by raising barriers that enhance this asymmetry by impeding the full participation of patients and their families, by slowing or hindering effective communication and by engendering mistrust. And again mistrust against, you know, can be with the individual physician with the--with the institution, with the system. And one thing that is very--that I find very interesting also because it is also very reassuring is that, you know, unfortunately there are, you know, in cross-cultural encounters, there are many biases and stereotypes, again prejudices. The one thing to keep in mind is that they occur at the level of everyone, the patient, the professional and the system. And so it's not just, you know, just the--or on our side as caregivers that we may have such prejudices.
And actually in most instances and this is coming from, you know, or reviewing also--reviewing the literature of course, they are the result of discriminatory attitudes and practices within systems. And it's almost invariably, these are also data that I gathered together with Marjorie Kagawa-Singer and her group at UCLA, and in some cases it is the professional burnout that is due to the difficulties of the cross-cultural communication that frequently leads us to sort of approach patients who come from a different cultural background with some sort of stereotyping and biases. And thank God, very rarely though, it is conscious intentional racism that comes into play which I think is a very positive thing to know and to start working on. So, I'll move now and forgive me for rushing through this, through cultural differences in communication.
In 1987 together with a colleague and friend of mine who was director of a cancer institute in Slovenia which is a small country in Eastern Europe, we published this book with the New York Academy of Sciences and in this book we collected 53 chapters from--covering all 5 continents and the way we did it was, if you wish, totally unscientific because we decided to just simply ask colleagues of ours, doctors whom we had met and whom we trust, oncologists and asked them to describe the way they wanted, no subject limitation, how was truth telling practiced in their own cultural countries. And a tremendous amount of difference came up from this going from cultures such as this in Zimbabwe, Dr. Levi who is an oncologist who trained in the UK and she wrote that she was working with this group and she wrote in the Shona language there is no word for cancer. Cancer is believed to be a ghost so start working from this but then even moving to something more close--closer to us than to resolve the issue of what the word cancer implies in the metaphorical sense. And it's interesting just even to go through different stages of metaphors within the Anglo-American culture and I ask you to forgive me if sometimes I use my, our culture for the Anglo-American and sometime I talk about my culture for the Italian. This is the confusion, okay. It comes with the enrichment, but you know in Anglo-American culture we have gone through, you know, the initial metaphor of cancer as, you know, as a metaphor of death and then we have moved through the metaphor of beating the odds. You know fighting the disease, beating the odds and now we are very much into this. I'm sorry the slides are not that great. To the image of the cancer survivor, the importance of the survivor and here I want to pause for a second and tell you something else about this, that for instance, the word survivor has a totally different meaning in different cultures.
I have been working, though I work--I'm affiliated with the NYU but I have been working mostly out of Italy in the past two or three years for family reasons related to good communication, it implies also that you communicate with your family and go there when they need you and it's--and I have been giving quite often not lectures but sort of having meetings with groups who are just, you know, with lay people or with patients. And I soon learned and one field that is developing now in Italy and I was trying to help develop it is that of addressing issues of cancer survivorship, which is so important and if you wish it's one of the things that is most patient centered, okay. And I realized that as much as in America being a survivor has a positive implication.
I know it from my friends when they wanted to give me a compliment. I'm you know going through a tough time. They tell me don't worry and tell me that you're a survivor. This is great. And when I was talking at these tours, I did it in two or three cities and I stopped of course. I mean I learned something, finally. I had these incredible hostile reactions--I'm sorry reactions from patients who are telling me, "Wait, I'm not a cancer survivor. I am a person," and so they took the meaning of survivorship as totally different and therefore I have to--you know I learned and I had to really not just of course rephrase most of what I was saying but realized that this is what culture means.
You know it's the metaphorical value but also the social value of the words we use of the expression of everything. And just very quickly, there has been tremendous evolution of communication with cancer patients worldwide. Of course, I'm using a paper from Italy, that's no wonder. But truth telling about diagnosis is now a common practice almost everywhere. This shift towards truth telling is of course towards the end of the '90s. As I was saying you know in that book that was published in '97 but took 5 years to put together there were these tremendous differences and just 10 years later, they had almost disappeared. There is now persisting this partial disclosure and definitely there is persisting no disclosure about prognosis and risks. Dr. Baile had done this one--written this wonderful paper based on this fantastic analysis but he has to take the time to explain it to you, otherwise, I won't be able to go on, where he described in these exploratory studies how oncologists just started towards giving bad news. And it's always attitudes and practices because one thing is attitude and one thing is real practice as we all know have been, you know, have been shifting towards more open disclosure.
Now, a lot of work has been done since then. Actually since the article of Walter appeared in JCO and still a lot of work is done by oncologists and a lot by psycho oncologists as well about you know communication preferences and needs of cancer patients. And there is a lot of literature now that describes the fact that they appear to be similar across cultures. Now, of course it has been proven that it's very important that the needs vary over time and of course according to the inner stage. One thing that you read very often in empirical research, I'm talking about empirical research now, is that informed patients show higher compliance but also higher satisfaction.
So actually they don't show all those signs of terrible distress that were in fact the reason for not disclosing the truth whether it was in America at the beginning, in the '60s, or whether it was in non-Anglo-American cultures in the '90s. They also showed that and this is a work that came from here and it's been done by Dr. Parker and Dr. Walker also that there are certain things about communication that patients value and that have to do with content, the accuracy and the completeness with the facilitative aspects, have a lot to do with the setting. Think about this. In Italy which is an industrialized country as you know from the various international meetings that we are having these days but it is still true that in most cases you have huge rooms with 7--6 to 8 patients just facing each other and all of the talking is being done, you know, in front of the other patients with the other people's relatives there. And it's just the setting, you know. Or most of the time the really important discussions about prognosis about shifting from, you know, therapeutic efforts, curative efforts to palliative care are done in the hallway with the people running, the trays--food trays going, someone opening the door of the bathroom, et cetera, et cetera.
And then there are the supportive aspects which are the psychological and emotional aspects. It is very interesting to me the fact that on one hand there is this increasing sort of a wealth of paper describing how all of this is sort of across cultures and with some differences I have to say. There was, for instance, a very interesting paper from Taiwan in Supportive Care in Cancer that describes how Taiwanese patients were, once they got to wanting to be informed and they were waiting for it, there was value in content over the supportive aspects or the facilitative aspects and gender differences. For instance, women valuing more the supportive aspects rather than men and men valuing more the facilitative aspects of communication and content.
But see the one thing that strikes me about this is that it seems to me like here there is an inevitable bias. And the bias is there when we analyze this empirical data which of course we do--we do gather, you know, utmost scientific, you know, methodology in great deal of honesty but we are really talking about the patients who for some reason get to be informed. So most of the time--in most cases we're talking about the patients who get to be treated at the big cancer institution where there is also the possibility to do research and to explore. So we know very little, actually, I don't think we know anything empirically. We know it anecdotally. We know it from our experiences but we know very little about those patients who are not informed. So the patients--when we talk about having similar needs and preferences or like giving importance to different aspects of communication, in reality we are talking about a population of patients who have somehow agreed to be part of that. It's very select. We don't know anything and I have to say, as I'm saying this, I realize fully that it is very difficult to gather data on uninformed patients or on the real [inaudible].
So there is a real methodological issue here and it's not like you solve it just simply by raising the question, "Is this bias?" You know that is very nice. You can make it editorial but it doesn't solve the problem, and one thing I was talking about yesterday to the palliative care group and I had this very, very interesting conversation with the group about the fact that this is where we should be focusing. Trying to gather the information and then try to understand not the data of those who have come to this shift in their attitudes but of the others.
But of course this is just open for our research and our hopefully, you know, common collaboration of all of us keeping in mind one thing because I won't have time to go through it in these slides although I have them, that we talk a lot about cultural diversities in our patients and we're sort of blind to the mixed cultural diversity among us, among the cancer professionals. And we could really learn tremendously I think just by simply, you know, thinking about our own culture and maybe sometime just by talking among us. You know, we talk about communication. One of the issues that I think is still an open issue is communication among us, you know, and sometimes if we were just simply to ask ourselves maybe in conversation or in small groups, you know, of how can you describe it.
Can I describe, can one of you describe an experience with a relative or a friend who died of cancer or who went through cancer then I think you will learn so much just out of this, you know, not needing any survey. Just want to tell you two or three things about one of the most recent studies. That is the most recent study that has been published on this evolution of truth telling attitudes in Italy and the study basically shows that on--all patients know their diagnosis with the bias said before. Of course the study is run somewhere where patients can get approached by a researcher investigating the questions. But certainly it is confirmed that there are truth telling variations.
The study is Italian but it's, you know, the situation is comparable sort of everywhere from the empirical research we have. It's affected by gender, by age, by the educational level, by geographic location, by the type of treating institution. Having said all this, in this survey they asked patients to write down whether or not they were informed. And there was a person like an assistant or someone, you know, sitting with the patient as they were filling out the form and a southern Italian patient who said, "Yeah, I know I have cancer," but then they would not write it down on the form, on the questionnaire, simply just that they didn't want to write it down. So this tells you a lot about how you can on one hand be informed and on the other hand you belong to a culture where, you know, there is a different meaning of the word. And there is some way of dealing with this incredible, yes, incredible trauma, incredible reality to live with which is cancer, where in fact you prefer not to talk about it.
Another thing that was very and for instance this happens with the elderly, with elderly people that is, you know, generally the case. Another thing that was described in this paper was very interesting was that southern Italian patients are very informed about their treatment more than about other aspects. This is fascinating because it's either patients are in great denial and despite being informed about their diagnosis, they hold on to the belief that this is going to be cured and therefore they focus selectively on the information they receive on treatment or, forgive me for being maybe a little bit biased in saying this, or maybe it is the physicians who are reluctant to really communicate with the patients about the real meaning of cancer. So they focus on discussion about treatment and very often they hide behind the so called neutral statistical information which is some kind of way of avoiding real communication.
Now I'll be very brief on this. Yes, my time is running out. But part of the problem is that culture also influences the ethical norms in clinical practice and the meaning of autonomy and of beneficence and when I wrote my first paper in '92 about truth telling differences between Italy and the United States, the thing that struck me was that autonomy there, as I said, was perceived as isolation not as empowerment. Now, in the end how can you approach this issue? I think, and forgive me for I may be sounding a little bit leaning toward my philosophical side but it isn't, is that the truth that--well, first truth telling is about truth and not about telling. This is a very important thing.
And the truth is not something static that is there waiting for your discovery and your verbalization of it, it's a dynamic reality. It's not neutral, it's value-laden and it's not something we tell but it is something that we share with our patient that we make, not something that we impose. I think that there is a tremendous risk right now that we witness this shift to a more open communication. There is a risk of what has been called once by Marcia Angell in the New England Journal of Medicine "Ethical Imperialism" and we should be very careful especially as we as members of major cancer center are making great efforts to go to developing countries and to really bring what we have acquired, the knowledge we have acquired and not try to export our model of communication and impose it on different cultures. And I think that here one fundamental principle of cultural competence and of a global approach to cancer is that whenever we do it with other realities we need to involve the local communities and we need to let the communication style emerge from them and not export them. And why is this? I think that this is also because, you know, it is not just the truth, there is dynamic provisional, et cetera.
It is the illness itself that has multiple dimensions and we know, and that evolves with--through interaction and we know of all these truths. Okay, time is not on my side but just very, very quickly. I'll skip through most of the slides but there's definitely persisting and emerging issues and certainly the discussion of prognosis, the family involvement in communication, advanced directives, imminent death, medical errors are major areas of communication that--where the, you know, cross-cultural differences can come in a very heavy way. But also there are key areas of major debate within our cultures and I won't say anything about prognosis. I very briefly just want to show one or two slides about the family involvement because it's a real major, major problem that we always have and of course the family is always part of the relationship.
Professor Lea Baider wrote that cancer is an illness of the entire family and also, the process of healing and caring for cancer patients depends on the reciprocal interaction of patient, family, caregivers, and oncology professionals. I would like to underline this within a functional system. Very often, we maybe--especially when we are personally sensitive or want to become such to cultural differences, we tend to maybe have a little bit of a naive approach. Like assuming that every family, you know, coming in from a different culture or from our culture is perfectly functional and this is not true. And if we want to be serious about helping our patients, we have to, you know, to understand that. Now, there are many different--I won't go through these but of course, the family involvement varies tremendously with culture. I just want to stop for a second on this study which, by the way, comes from this institution and it's one, in my opinion, one of the very best studies ever done on this issue. And Dr. Anderlik and her colleagues surveyed in 152 patients from--I'm sorry, oncologists from M. D. Anderson, and found that 57 percent of them over the past 12 years had had one or more family requests to withhold the truth.
They also found that 37 percent abided occasionally, 36 percent never, and 2 of them and approximately 1.5 percent always. And the reasons for abiding to the family requests were respect for the patient and their cultural norms, consideration of the patient and emotional status, expressed wishes of the patient, concerns about destroying hope, or family expressed wishes and of course, oncologists were more willing to withhold prognostic information. Now, I think that there are some lessons and I'm sorry I've skipped all of the data on, you know, don't take them again. It's too prescriptive. But the thing that I learned from my own clinic, from my own practice, one is not to stereotype family patterns of reaction based on a cultural or ethnic background. Let's consider that there is acculturation. Let's consider that if the patients are here to be treated at M. D. Anderson or at Memorial or even in, you know, the European Institute in Milano, they are here because they have made a certain selection.
So, they are ready--you know, let's be very careful about stereotyping. One thing that we can do, of course, we are not, you know, not all of us are the experts, we, as medical oncologists, are not and I think we are not necessarily. But to pick up or identify the families who are at risk of particular distress and dysfunction and we refer to them we have the possibility to do it at our cancer centers for counseling. Of course, understand and negotiate the concerns of family members but trying to foster the patient's autonomy. One question I've been asked in the past few days by many of you is--but yes, but when the family tells you don't tell the patient and here you are at M. D. Anderson and how do you really do it? Well, not--again, this isn't a prescription but this is the way I learned how to do it through many mistakes including the one that I was describing in the first case, is you have to invest the time and speak to the family and let them express their concerns and tell them that you understand them.
And at the same time though, tell them why is it that here we do it differently, not because it's the law or even though this is something that is part of it so there is no need. You won't communicate it if you are hiding some important and relevant information. But why we do it because we believe that the patient who is more informed in an appropriate way, assuming we communicate better, are more open, is going to be doing better and say that and then let the family have some time, possibly without you or with you and whatever, but some time when they sort of discuss this among themselves. In most cases, families are not all one-sided on this issue and some family member may start realizing that there is a point. And then going back to the family and say, and this is something that, of course, Dr. Baile teaches regularly in his courses. It's, you know, you tell the family, "Yes, I mean I will respect you but my obligation is toward the patient so I want to gently, but I want to hear it from the patient," and then you go in to get--and you really ask the patient and you can--you don't go there, "By the way, do you want to be informed? Yes or no?" That's a little bit, you know, against what we're talking about. But one thing that may help is just, you know, the usual rule of starting by saying, "Okay. So, this is our first time meeting. Why don't you just start telling me what your impressions are, how are you feeling, what do you know so that then we pick it up from there." And just from this, you open up and you understand a lot and then you can ask, "Would you prefer when we get the results, would you prefer me to talk to you, to your husband, to your mom, et cetera?" Now, there is one thing important that comes down to the literature and it's that we have to address the informational needs of patients and their family knowing that they are different. And they need to be addressed differently and there are empirical studies on this. Provide them guidance. Consider the role of family members when they are translators and I don't know how many of you have had this experience but when I worked at Belleview, I had many patients who would come in, especially young women who had breast or ovarian cancer who would come in not speaking a word of English and their translator was a 7 or an 8-year-old kid. And, you know, that is amazing, or it was an elderly family member who has a totally different degree of acculturation, or someone who had conflicting issues. So, we skipped this entirely but these are all things that you know, just going back to the art of caring and you know, summarizing what I think we can do and do not make assumptions with our patients. Ask them.
One thing I find useful in my practice is to ask them to briefly describe their cultural and religious background just up front, you know. And when necessary, and by necessary I mean when appropriate and this is something that we have to feel out. But if there is a difference, there is a cultural difference there is very obvious, so there is great--no, just describing towards, "Oh, yeah you know, I'm from here," and I, you know, and I do this just very briefly but make it reciprocal. Don't make it like this is a police investigation on your cultural background because that is very offensive. And the other thing is ask your patient what type of family do they belong. Meaning do you have an extended family, are you here just with your, you know, with your husband or what's your family. And one thing that helps a lot is to ask, just ask and when you have a problem or you have the decision, who do you talk to? And then you learn a lot about whether for instance maybe the patient is from an Asian or an Arabic or an Italian background, but is here alone working or with her partner and totally--and you learn a lot and besides, you open up to something that is positive about the culture.
Ask the patient the language they speak at home, very important information about acculturation. Try to offer a professional translation when it's available but knowing that the translator is not a dictionary. The translator is a very important member of the team. He's a cultural mediator, somewhat who really becomes part of it and all the translator, a lot of respect that we should need--we should ask for the translator feedback all the time, as Dr. Epner was pointing out the other day to me and thank you for making this important point. Double check, obviously, that the translation if it's done by a relative or a friend that it's accurate. Never assume that the patients don't wish to receive information, et cetera. Ask them how informed they wish to be and also, check and this is again, you know, Dr. Baile's constant teaching, check, check, check for their understanding. Go back to the question, ask them, you know, and try to feel it out because this is about the communication evolving, everything is evolving. And I thank you very much for listening to me all this time.
[ Applause ]
Thank you very much. So, we have the time for one or two questions. If anyone has a question, will they go to the microphone so we can hear? Yes, someone going? [Pause] So while someone is stepping up, I'd like to ask how you might have done things differently with the patient with the black-dress?
In fact, it is my desire to write something entitled The Black Dress because that's reality but I never got the time to really do it as we always do. We end up doing the other papers that, you know, are sort of less near to our heart. I would have done it differently because I had an open communication with her and instead of thinking at the time when she relapsed and she did tell me that she didn't want to be specially informed and also the--all the family around definitely really enforced that notion. I should not have taken for granted that this was her culture and that this was her way of doing it. I should have been more--I should have been more certain with respect to her being an individual person and us having a particular relationship and be able to keep communicating with her. In a sense, I let a year and a half go by without going back to her. That's what I'm saying at the end. It comes from my--going back to her and saying, "Okay. Now, would you want me to--would you want us to have a different conversation?" That I didn't do and when I happened to have--need to have it, it was so traumatic for both of us and so that is what I would have done—pushed it up.
So, [simultaneous talking]
I would have--you know, I would have put way more trust in our communication, the communication between us rather than allowing myself under--I'm being very, very harsh with myself and I don't--I'm not going on a guilt trip but rather than hiding behind the respect for the cultural difference, I should have been more tuned to the fact that she as an individual may have had a different--I sort of--you know, in a sense I stereotyped a little bit and then took it as I'm respecting the family and culture and that is where I made a mistake I think and I feel very sorry about it
Antonella, I really enjoyed that talk quite a bit.
It's wonderful. The theme that I took away and I want to do a reality check. The theme that I took away from this talk is that the key to cultural competence is really having a system of meticulous communication skills and that if we were to take hypothetically somebody from middle America who's never been out of their hometown and they come to medical school and they sort of come to us and say, "Well, what is the key to cultural competence?" I think what I'm taking away is that we could give them a system like we give them a system for doing an H&P, a physical examination which is very systematic where they start with the eyes and they go down to the toes and I think if we--wouldn't you agree that if we give them a similar system of meticulous communication skills, we practice those skills with them and teach them a system that really that's the key even if they've never met anybody from any place other than their hometown.
I totally agree. As you realized, I skipped the part I had on cultural competence and how you teach it. Cultural competence is really defined as a set of skills and virtues together, okay, and is based on having knowledge and this knowledge is something that we have to acquire and of course, we don't--how can we know about every patient-doctor relationship style on the ward. We can but that is where community comes in. You know, we really work in a certain community. So, we have a certain community and we can--you know, we have to learn systematically as you say about communication preferences and styles. Also though, I think and it's been said also, the IOM is talking about patient-centered care including cultural competence in patient-centered care and the IOM went so far as to say that it is also a tool to decreasing health disparities.
So--but how does this work when the individual cultural competence is always to be coupled with an institutional and a system cultural competence because we know this very well. It's like, you know, you can know your H&P perfectly if you work in a situation where, you know, you have no support and then your H&P leads no where because then you don't have the means to do things or you don't have the culture to do things. Then it's in effect, the same goes for cultural competence which I've described with respect to communications, so I've sort of put it in individual terms but is a system and an institutional issue. So, okay.
So, I really like the idea of thinking that culture is not race. It's not ethnicity. It's the web of relationships that--in which people are immersed and I think if we remember that, that we'll think about this nice, broad concept of trying to understand people's culture. Thank you Dr. Surbone.
[ Applause ]
Thank you. Thank you very much. Thank you.
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