Antonella Surbone, M.D., Ph.D. FACP
Professor of medicine
New York University, New York
Lecturer in moral philosophy and bioethics
Universities of Rome and Turin, Italy
Dr. Baile: Hello I'm Dr. Walter Baile, Director of the M. D. Anderson program on Interpersonal Communication and Relationship Enhancement, or ICARE. As part of our round table discussions with experts in the field of patient communication, today we're very pleased to have with us Dr. Antonella Surbone. Dr. Surbone was trained in radiation therapy and medical oncology at the National Tumor Institute in Milan Italy, and at the National Cancer Institute in Bethesda Maryland. In her spare time, she also received a PhD in philosophy from Fordham University. After her training, Dr. Surbone served on the faculties of Cornell Medical School and Memorial Sloan-Kettering Cancer Center in New York. From 2004 to 2006 she was head of the teaching research and developmental department at the European School of Oncology in Milano Italy. She's currently professor of medicine at New York University, and lecturer in moral philosophy and bioethics at the University of Rome in Turin Italy. She's also served on the ASCO Ethics and Educational committees, and has been the ethics track team leader. Dr. Surbone has published extensively in the fields of medical oncology and bioethics, focusing on a number of very important issues such as the doctor patient relationship, truth telling, and cultural competence, ethical and social implications of genetic testing for cancer predisposition, the ethics of clinical trials in the elderly, and disclosure of medical errors in oncology. Please help me to welcome today Dr. Surbone.
Dr. Surbone: Thank you very much Dr. Baile for that introduction.
Dr. Baile: Well I wonder if we could start Antonella, with talking a little bit about what your thoughts are about some of the most important issues, bioethical issues, facing oncologists today.
Dr. Surbone: Yes. I think we have 2 sets of issues. The first one relates to global control of cancer, and the other in my opinion would relate more to the administration globally and in the western world. With respect to global issues, it is very clear that now with the aging of the world population worldwide, and with the increased cure rates of cancer, cancer has become a health priority everywhere. And in fact the WHO, in 2005, issued a document declaring for the first time cancer control and cancer prevention as a worldwide priority. And this brings along several ethical issues. The first one of course is providing education and access to cancer care everywhere in the world. It is studying the communication styles of populations outside our industrialized world. And... it also bears upon the ethics of conducting research and providing optimal treatment to elderly patients everywhere in the world. The IOM in 2008 issued a document on the aging population in the United States, and described it as a new emergency in the United States. It also brings with it the issue of the importance of caregivers, whether it is for elderly cancer patients, whether it is in our western world, realities or in global realities. Then I think that the main emerging issues are the ethics of disclosure, control first and of course then the disclosure of medical errors wherever they occur. As you mentioned in reference to my publications, all the ethical issues related to genetic testing, and our ability now to even have access to genetic testing without going through an institution and so on, and individual pay-for basis in our western world. And in reality I think that in the end, it all comes down to the ethics of communication and we need to improve cross cultural communication, we need to improve our level of cultural competence, and develop ways to measure how it impacts on our ability to serve our patients everywhere in the world, and by doing this also to possibly erase or alleviate the disparities in healthcare.
Dr. Baile: Well thank you for that overview. I wonder if we could talk about a few of these issues more specifically. I know that you've had a long standing interest in the issue of truth telling in oncology, and the cultural and geographic differences and in some regions of the world we operate, as we do in North America, on the principle that patients need to have full disclosure of information related to their cancer; but in some other regions of the world, it's quite a different sort of approach. That disclosure does not always take place, and I wonder if you could talk a little bit about some of these cultural and geographic variations and how they impact oncology care?
Dr. Surbone: Well of course, it won't be talking a bit for me, that would be talking for years... but I would say that it all started, my interest in this all started, because I trained in a country where... Italy… where we were and we still are in part, not informing a cancer patient of their diagnosis. And I remember during my training years there, patients would come to a place called the National Cancer Institute... Nazionale Tumore, so the word cancer wasn't really spelled out, it was tumore. They would undergo treatments which at the time were much less easier than they are now, and they would see their disease progressing and experience side effects of treatment and pain and everything we know, and then approach the end of their lives without being informed of their illness. And this was just part of the culture and of the way the certain cultures are structured. They are structured around family and community values, where the importance of reciprocal help and protection takes priority over the importance of individual autonomy as we understand in an Anglo-American culture. So it's... the situation has changed dramatically. In the mid 90's we published a book with the New York Academy of Sciences on differences of truth telling worldwide. The reports from... in 53 chapters the report from all continents was of tremendous differences. Then all of a sudden, probably with the event, with the era of a global communication, most of these differences seemed to be sort of erased. And truth telling about cancer diagnosis has become very common almost everywhere in the world. Despite all this, research shows and mostly personal experience, not necessarily mine, but the experience of our colleagues just tells us that there are still persisting major differences and they are related to the way that different cultures work; and culture always works to protect the people. A culture is a way of life, human culture is the way that gives a means of interpreting reality and serves as a way to help people function within certain systems. So this is how I would describe it.
Dr. Baile: Yes. Getting back to the developing countries such as those in Africa for example, I wonder how the unavailability of cancer treatments, effective cancer treatments especially in those countries where patients present with advanced disease, really presents an additional problem in truth telling because if there's not an effective treatment, it really may cause a lot of turmoil and distress in the patient. Do you have some thoughts about that?
Dr. Surbone: Absolutely. I think this is a wonderful question, also because it connects to the way we have always interpreted the evolution of truth telling attitudes worldwide, even in the United States we started with the reporter Dr. Oken in JAMA in 1961 where he surveyed physicians and almost 90 percent or even more were not disclosing cancer diagnosis, and even less prognosis to patients. And then in 1979 Dr. Novack and his colleagues did repeat the same exact survey using the same instrument used by Dr. Oken, and the same patient and physician population, and noticed that there had been a dramatic change and almost all physicians were informing the patient. And their conclusion was there had been medical, legal, and societal changes. The medical is the one you were referring, there had been so much improvement in cancer therapies and also in the availability of good, effective, palliative care that it was obviously easier to talk to patients and tell them about. Now what you are describing, referring to, is the situation in countries where this isn't available. And I agree with you, this poses a real moral quandary when you try to export our North American or Anglo-American way of informing patients as a means to enhance their capability and the possibility to participate to decision making, and therefore to have a better quality of life. When you try to export this onto people who, populations where there is not an availability of treatments, and where the patient may as you described, arrive to you at a very advanced stage already without ever having known anything, then in my opinion there is a risk of what has been called by Marsha Angell the ethical imperialism. And I think that that is a very delicate situation. That is why I think it's very important, and when we talk about cross cultural communication, we... we separate the cross cultural communication there, we learn and teach it within the western world, and would we want, from the problem of how we want to develop it, in how do we want to develop it and implement it in developing countries? And I think to be really ethical in doing this, what we want to do is involve the local community and let them speak. Communication cannot be something that we impose. It has to come from those populations themselves.
Dr. Baile: Getting back to the United States for a moment... I recently attended a workshop hosted by the Institute of Medicine of the National Academy of Sciences entitled Enhancing the Quality and Value of Cancer Care. And there was a lot of discussion, both of the value and the costs of using anti cancer treatments toward the end of a patient's life, or when cure was no longer a realistic goal. And there have been some studies showing that among Medicare patients, many patients got chemotherapy in the last 6 months of life. And I wonder what you think about the ethical and implications of that sort of issue, because it seems to be fairly widespread in our country?
Dr. Surbone: I think it is a major issue and not just in the United States. I can tell you that a recent survey in Italy showed that most cancer patients get some form of chemotherapy in their last 10 days of life. So it is unfortunately a widespread problem. And I think... again this belongs really to the ethical but also moral quandaries of our time. A lot has to do with the fact that we, as a medical culture... but also we, as western cultures, have tried to really push the suffering and dying as far away as possible from us. With respect to physicians and the medical oncologists, and I know because it's just part of how I was trained and how I was and why I went into the medical oncology field. We want to cure our patients. We want to do research. We want to always push the boundaries and go farther with effective treatments, and we don't... I think we as oncologists don't do well with the notion of uncertainty, and with accepting that sometimes we fail, sometimes we make mistakes, and also the disease is a disease that is very often fatal. I think that the ethical issue is not so much debating whether for individual patients, chemotherapy at the end of life may be appropriate, because there are patients for whom it may in fact be appropriate.
Dr. Baile: Palliative chemotherapy for example?
Dr. Surbone: Yes, palliative chemotherapy. There have been many studies for instance, in the field of breast cancer that show that for some patients, like even intermittent courses of chemotherapy sort of in a palliative way, may have a meaning. So I don't think that this is so much the ethical issue as much as the ethical issue is when... we need to improve our ability to transition a patient toward palliative care. But if I may say it, we have to learn how to transition ourselves as oncologists and medical surgical radiation oncologists, toward knowing that we can help our patients and we do give them care whether it is active treatment or palliative care.
Dr. Baile: There was some talk about there really being very few economic disincentives, times not to treat patients aggressively toward the end of life, and do you think this is another ethical issue that we're facing?
Dr. Surbone: Of course. This is another immense ethical issue because we have to acknowledge the fact that most cancer therapies are very expensive, which means that it impacts on our healthcare costs. It also means though that there are people who profit from them. And so we live unfortunately in a society where market rules take priority over what could be the ethical way of dealing with people, in a way that should be individually maximized care, and at the same time should be fair care and just care that means that the access to care should be the same for everyone. So I think that unfortunately we as oncologists are working now under tremendous time and economic pressure. It's inevitable that if you combine these 2 aspects, you come out with the fact that often it is the easiest solution to give a chemotherapy for which you're also, by the way, reimbursed in a different way than to spend time with your patient and their family and tell them that things have changed and now we have to move to a different stage.
Dr. Baile: So this is a complicated economic communication... ethics issue which we're going to have to sort out as a society.
Dr. Surbone: I think so, especially coming back to what we were saying at the beginning. If we consider now that the vast majority of cancer patients, and also of cancer patient survivals, is going to belong to the elderly population. So there will be issues also related to the effect that elderly patients can be more frail, can have more co-morbidities. So whether we want to use aggressive treatments with elderly patients is another issue, and may be seen in both ways. Right now we tend to be sort of a little bit discriminatory towards the elderly population. For instance elderly cancer patients are not sufficiently represented in clinical trials.
Dr. Baile: I was going to ask you about that, yes.
Dr. Surbone: So that is... I'm sorry... it was coming from the chemotherapy in the end. The... clear under representation of the elderly population in clinical trials, which is extremely problematic from a scientific and from an ethical point of view because clinical trials are the best instrument we have now to confirm... or on the contrary to disprove that a treatment is... one treatment may be better than another treatment. If we conduct clinical trials, not including the population for which the results of clinical trials are going to be most useful, simply because that is going to be the prevalent cancer population, we are doing a major medical disservice and definitely we are using a discriminatory attitude.
Dr. Baile: So what works for one group that are the subjects in clinical trials, may not work for a group that has not been sufficiently included in that trial?
Dr. Surbone: Yes, exactly, so in the end you may have results that may not be... that may not be necessarily false or misleading in themselves, but that apply to the population that has been studied when on the contrary you need to be able to use the drugs or the different treatments, this is true for instance also for radiation therapies or surgical treatments in the elderly; and you end up not knowing then whether or not you can apply them to a population that is truly somehow different on one hand. On the other extreme, you may end up over treating elderly patients without taking sufficiently into account their possible co-morbidities at various levels, not just medical but also in functional ways.
Dr. Baile: As well as their metabolism, which might be different.
Dr. Surbone: Absolutely, absolutely.
Dr. Baile: Lastly I'd like to touch on the topic of medical errors, which has been a more recent burning interest of yours, and which of course has evolved significantly over the past 10 years in America, as you mentioned yesterday in your talk. And I wonder if you could address that so our viewers get a little idea of where we come from and where we're going?
Dr. Surbone: Up until approximately 10 years ago, the issue of medical errors had never been really systematically approached. Then there was the Institute of Medicine document "To Err is Human," where the IOM addressed the epidemiology of medical errors, but also the impact of medical errors... on the patient, and on medical care, generally speaking, and also in part on the physicians themselves. The recommendations of the IOM were that we had to study medical errors epidemiology, we had to implement ways to improve patient safety in all possible ways, but also that we had to disclose medical errors. And this would be the one thing to do for many reasons first of all, because that is what respects the patient's integrity and respects second, because it is what can maintain and restore trust in the patient doctor relationship.
Dr. Baile: Maintaining the continuity of the relationship with the patient?
Dr. Surbone: The continuity of the relationship, and the trust. It may seem sort of contradictory, but indeed trust is maintained the most when you do disclose errors rather than when you try to hide them. And lastly, there was the issue within the United States of course, of the impact of disclosure on potential litigation. And there have been empirical studies that have shown that in fact appropriate disclosure accompanied by a sincere apology, would reduce rather than increase the risk of litigation. In 2005 there was a follow up study by Leape and colleagues in JAMA entitled "To Err is Human 5 Years Later," and it was very beautiful to see how truly in 5 years the situation had changed throughout the country. We did, as ASCO education out of the committee; we did the first session on medical errors at ASCO in 2005, which was extremely well received. We got the front page of the Daily News, though ASCO not being necessarily a clinical trial session. And what we did is we also had an expert on this and was conducted in empirical studies, showing that with respect to medical errors in the United States there is a situation similar to the one of truth telling years ago. Most physicians and surgeons were agreed that it is important, that it is needed to disclose medical errors when they're asked "Have you done it in your practice?" The majority would still say actually not as often as I think it should be done. And so there is this aspect that then disclosure is very difficult, even if you agree in principle to do it. And then we had a patient... a patient, she actually was a patient of mine and she is a journalist, and she gave a wonderful, very moving talk about her experience of different medical errors throughout the course of a long illness that she's been fighting wonderfully. And what she pointed out was that the most important thing was the sincerity of the apology, but also the apology itself coming from the oncologist. And then she also talked about a different view of medical errors in terms of institutional arrogance, referring to the fact that sometimes it isn't the doctor. The patient understands very well that it isn't the doctor's fault in a personal way; it's not the doctor having meant ill, something negative for the patient, there is a component of systemic error, team errors, and systemic errors. But what strikes patients the most is the lack of communication, which is interpreted as arrogance. So what is very interesting...? I'm sorry, before I get to this. And then we had a sociologist from Yale discussing the doctor's experiences of medical errors, what we as physicians feel inside - we feel guilt, we feel shame, we feel scared, we feel like personal failure, and altogether what emerged from that session was that there is a difference between how patients and their families understand errors. The medical error is understood in a more... in a wider sense, and again we go back to the communication issue because very often patients see the gravity of the error more in terms of the communication that when we're wrong about it, then actually in terms of blaming something that could be either an accident or intended.
Dr. Baile: So the issue is not really whether to tell, it's what 'to tell and how to tell. Which is... and I hope our viewers can take advantage of the module we have on our website on disclosing medical errors. This has been a very enlightening discussion about some very important topics, and I'd like to thank Dr. Antonella Surbone for visiting with us today, and talking about her experiences in ethical communication issues in oncology.
Dr. Surbone: Thanks for inviting me, and thank you for the wonderful work that you have done for oncology everywhere in the world.
Dr. Baile: Thank you.
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