Luigi Grassi, M.D.
Professor and Chair of Psychiatry
Chair Department of Biomedical & Specialty Surgical Sciences
University of Ferrara, Italy
Dr. Baile: Hi, I'm Dr. Walter Baile, Director of the MD Anderson Program on Interpersonal Communication and Relationship Enhancement. We're pleased to welcome for today's roundtable discussion, Dr. Luigi Grassi. Dr. Grassi is Professor and Chair of Psychiatry at the University of Ferrara, Italy and Chair of the Department of Biomedical and Specialist Surgical Sciences. He worked as an attending psychiatrist at the Community Mental Health Services in Ferrara then moved to the University of Ferrara where he's the chief of the Consultation-Liaison Psychiatry Service and the Psycho-Oncology Service at the Santa Anna University Hospital in Ferrara from 1993 to 2001. From 2002, Dr. Grassi has been the Director of the Clinical Psychiatry Unit, Integrated Department of Mental Health and Drug Abuse, National Health Service Community Health Agency in Ferrara. Dr. Grassi has served as President of the International Psycho-Oncology Society from 2006 to 2008. He is currently the Chair of the International Psycho-Oncology Society Federation of Psycho-Oncology Societies and of the Section on Psycho-Oncology and Palliative Care of the World Psychiatric Association. And that's since 2005. Dr. Grassi is the author of many scientific papers published in peer-reviewed journals and books on the psychiatric aspects of medical illness in Psycho-Oncology including the recent book edited with Dr. Michelle Riba called Clinical Psycho-Oncology: An International Perspective published by Wiley. For his work, he was awarded the 2012 Arthur Sutherland Award for Excellence in Teaching, Research, and Clinical Care by the International Psycho-Oncology Society. Dr. Grassi will be joining us to give a lecture as part of our Achieving Communication Excellence series on Distress Detection in Newly Diagnosed Cancer Patients. Welcome Luigi.
Dr. Grassi: Thank you.
Thank you. So, next week you'll be giving a talk and--on the topic of detecting distress.
And I wonder if you could tell us a little bit about this because I know that distress has really been more recently a focus of international studies and as I understand there were also now distress guidelines that had been published by the National Cancer Center Network. And so, could you talk a little bit about your research and the topic of distress in cancer?
Yeah. Yes, distress is a very common problem in cancer patients and affecting 30 to 35 percent of them in every phase of disease. So from the beginning to the palliative care, part of assistance, and it has become one of the most important areas that has been studied in psycho-oncology because it's a way to evaluate the suffering, emotional suffering of patients immediately by using very short instruments. So while in the past, psycho-oncology research attended to evaluate psychological distress to very complicated questionnaires and instruments. Now, starting in '97, the National Comprehensive Cancer Network as you said, developed this short instrument called the Distress Thermometer and the problem list that can help nurses or oncologist, palliative care physicians to detect immediately the possible problems that the patients can have and start discussion, more specifically emotionally oriented focused on the problems that the patients can have. The problem was that, that was really true for English speaking countries and that's a lot of literature regarding the distress screening in United States of America and Canada. Canada has taken the distress thermometer as the 6th vital sign to be assessed in every cancer setting in order to focus attention to the emotional problems that cancer patient can have. The problem was that, we have to translate the distress thermometer in many different languages and that was particularly interesting for Southern European countries where the word distress, it does not exist in our vocabulary. And both for Spanish for French people, for Italians. So we have to adapt a little bit and to adjust from our culture just the word distress, but we were able to do that and we created a lot of networking groups working together in order to have a little bit more knowledge about the situation in our countries and we co-validated and we validated the data that literature already presented in the past. That is about 30 percent of patients have a condition, we can call that condition "caseness" or psychosocial morbidity or distress situation that needs medical attention, clinical attention, it needs to be referred to psycho-oncology for a proper treatment. And that's what we did in the past 7 years, starting 2004, 2005 particularly in the Southern European area, now with the--within the Southern European psycho-oncology project that involved the 3 countries in Southern Europe that were Italy, Spain, and Portugal. And the distress thermometer was one of the tools that we used in order to assess emotional sufferings, psychological pain, psychological disorders in cancer patients.
So what is the word that you came up with to describe distress in Italian just to--
The word that we used in Italian is disagio.
Meaning discomfort, psychological--
[Inaudible] I think—ill at ease
Okay. Yeah. Because, you know, particularly old people do not understand the word stress or distress and they make confusion between stress, stress at work or whatever. So the discomfort is the word that we just said [inaudible].
So, you know, there are some people who would say, "The more I measured distress in cancer patients, because they-re all distressed and, you know, wouldn't you be distressed also." So how would you respond to that kind of statement where--
Yeah. This is very typical also in our clinical oncology settings. There--as for this, we need to have very clear that there's a difference between a physiological, normal responses, psychological responses, it's very normal and physiological to be sad, angry, anxious in front of a stressful event, but it's important for us to be able to understand when this physiological and normal response becomes abnormal, psychopathological, or pathological. And creating problems in terms of quality of life, adherence to treatment, possible depression, clinical depression, anxiety disorder, so becoming something that should be evaluated and properly treated. So we have to understand the difference exactly and the idea to denominate distress as it seems to be a vital sign is exactly that like a pain or a temperature. We can have very normal states of distress, but very abnormal states of distress. And we have to be able to identify the 30 percent of patient that are not able to cope successfully with the stress of cancer.
So how does the distress thermometer work in that regards to help you identify patients who may have a distress level that is beyond not what you would expect as a normal reaction to cancer?
Yeah. In order to facilitate patients, we then identify their level of discomfort and suffering. It is like a visual analog scale on a 0 to 10 point like many visual analog scale used for evaluating pain. And most of the literature --agrees that a cutoff of 4 or more than 4 is the cutoff identifying those patients that are not able to cope successfully. As for every state dimension, so a distress thermometer evaluate your situation now or in the last few days, that should be repeated and readministered to the patient many times when necessary or at every visit in order to understand if that situation has been changed across time.
So if you have 30 percent of patients who score 4 or above on the distress thermometer, is there any data that shows how many of them will be continued to be distressed in 2 weeks and--so what I'm asking is, is this just a temporary thing or is your sense of it that, you know, once your distress is high enough to reach the cutoff point, it's sort to stays there. Is there--have you done some longitudinal work or other people done longitudinal work on that?
We did a longitudinal work in Italy when we validated a distress thermometer last year and we involved 38 cancer centers throughout the country involving more than 1,000 patients and we did exactly what you say. So we administered the distress thermometer to 0. And the best--baseline and then we readministered that after 1 month. What we showed was that, again, we confirmed that 30 percent, around 30 percent of patients were distressed at the baseline and actually some of them, about 10 percent were not distressed anymore 1 month later, but 15 percent of those that we have not casesness at baseline were distressed that [inaudible] at to 1, so 1 month later.
So that means that the distress as a dimension or a domain should be evaluated regularly, monitored in a very clear way. The second problem that you mentioned is, what about the patients that identified as distressed can be followed in more specific way by psycho-oncologist or psychiatric carers? And the problem is that, screening is only the first step of a longer process.
It's not enough just to screen patients and send them to psycho-oncology units or psycho-oncology departments, you have to create a very strong and passionate dialogue with the patient in order to convince him that he needs help because we know from the psychiatric literature, but also from the psycho-oncology literature that around 40 percent, 50 percent of those who score high to some psychological disorders do not want to be helped. They don't go even if I refer the patient to the psycho-oncology unit. The patient doesn't go there. So, it's important that the oncologist, that their physician starts to convince the patient the importance of not only screening, but also to referring in a proper way, creating a liaison with a psycho-oncologist working on the unit.
I think that's probably a major task of the folks taking care of the patient because--
--people have a hard time sometimes asking for help. So I wanted to ask another question about the distress thermometer. And kind of reflect with you a minute on Peter McGuire's work and I remember that his group in Manchester did a study where they showed that the number of concerns that a patient had was related to the subsequent development of clinical anxiety and depression. And so I wanted to ask whether or not the distress thermometer actually predicted who would have or develop a clinical depression or clinical anxiety or whether it was correlated with a--for example a DSM diagnosis of anxiety and depression or is it just sort of like this person is at risk for developing a psychiatric disorder. I wonder if there's been work done on matching the scores on distress with some of these more standard diagnoses in psychiatry that we talked about.
That has been done not completely, but many others have studied exactly this area and this aspect. The Federation of Psycho-Oncology Society is actually, is creating a network in order to have the distress thermometer used in their own countries and that in order to create and develop a new policy in their own countries and then in the National Cancer Act to use the distress thermometer and to validate it as an instrument possibly related to the risk of developing psychiatric disorders, psychological disorders, et cetera. So what we know at the moment is that, the distress thermometer can be of help in order to screen patients that present actually symptoms of emotional distress. At the same time we know that emotional distress is related to the number of concerns as Peter McGuire had showed many, many years ago. Even if it's a very short instrument with just a number on it, 0 to 10 scale, it is also related to coping mechanisms, so the more distressed you are, the poorer coper you are and with the cancer and cancer consequences. It's also related to possible risk factors that you have before the diagnosis of cancer. So there's a group of people that for many reasons because of the number of stressful events in their life or because of psychiatric disorders in their life or for other reasons are at risk of developing distress after a new stressful event like it is cancer. So, if we use the distress thermometer in a very broad way and help nurses and physicians to use this thermometer, not just as a little instrument to be put in the chart, but as a way to start a dialogue with the patient including possible risk factors for psychological disorders that we know, that now, we know very well. And to examine in more detail the worries, concerns, possible problems that the patients have, that is exactly the good use of a very simple tool like a visual analog scale.
So just to sort to clarify that for example, if I'm a new patient who comes in and I fill out the distress thermometer and my score is 7 out of possible 10, that--is there any--the research hasn't been done yet that could say whether or not the distress thermometer score of a 7 or an 8 or a 9 really can pick out a patient who might benefit from psychopharmacology treatment for depression. In other words, that hasn't been quite done yet. Is it?
Yeah, yeah, yeah.
But the problem is exactly that if a researcher or a nurse or a doctor just says--or sees that the patient has a score of 7, he can just use this, you know, value in order to start a dialogue and say, "I'm seeing that you scored 7 on the distress thermometer and you indicated a lot of problems that you had in the last week. I would like to know more about what is going on with you. What is exactly the problems that you have? What are your main concerns, what are your worries?" So it's a way to create a dialogue and good doctor-patient relationship.
It sounds like a good preventive tool for preventing the development of further psychiatric problems because, you know, the cancer diagnosis is only the beginning of the patient's journey and we know that cancer patients are subjected to, you know, problems with pain and problems with nausea and problems with coping. And so, I would imagine that when those get added to what the patient has already in terms of the baggage that they bring into the cancer setting that that really can create some clinical psychiatric problems.
Absolutely and the interesting fact that should be very clear to all the doctors and nurses in psycho-oncology working with such instruments is that it is true that it is the 6th vital sign, but unlike the other vital signs that are really objective in terms of temperature, objective value of pressure, blood pressure is an objective data. This is a subjective one. And since it is objective it means that you have to go on just not to screen and that's--you've done your work, you have to go on not just the beginning. You screen but at the same time since it's a subjective domain you have to go on and understand a little bit more which is be--what exactly is beyond the number and the value. So communication skills in these respects are really important, are absolutely necessary and this is one of the very interesting areas in which a very simple thing like a visual analog scale can become a way, a key to open up--
Dialogue, that's right.
So getting to the issue of communication skills and that. Is the audience should know also that you and I have taught communication skills together in Italy and other counties. How active now are these skills being sort of identified as key components of oncologist's repertoire in terms of they're being able to have the kind of dialogues with patients that the distress thermometer are not required. In other words, is there a national recognition that communication should be part of an oncologist training?
And, maybe even, you know, part of their certification examinations. Is that something that's being discussed or--
Yeah. That a--it has been discussed, we are currently investigating exactly these aspects in--throughout the countries belonging to the Federation of Psycho-Oncology Societies. And the main issue was to understand if the National Cancer Act already or they are doing that are considering the psycho-oncology communication skills training, everything concerning psychological aspects and issues in cancer as part of the organization of the health system in their own country. And we are gathering data with the interesting results brought from the Netherlands for example, Germany, Canada in particular.
As for Italy I can say something more about that and that's--and we have a very good success with this. The Italian Psycho-oncology worked a lot together and in partnership with the Federation of the Association of Advocacy Group in the country. And they were able together to convince the Ministry of Health in their country that psycho-oncology should be part of the National Cancer Act and something that should be recognized as a very important, indispensable added to be a part of every clinical care--cancer care in every cancer setting. And within this recognition the document that the ministry released last year for the period 2011-2015 is that psycho-oncology is part actually of the curriculum. And we--then write the name of that is Basic Level of Professional Training that includes many different areas as you can imagine from pain to palliative care, epidemiology, clinical care, and different guidelines. And psycho-oncology is part of these basic levels of professionalization, they should be part of every curriculum for every cancer doctor. So that's a big success that we obtained in the last 2 years.
I would imagine that there's still a lot of prejudice to overcome in that. A lot of doctors think, "Well if you had cancer you'd be--have psychological problems also and so this effort has had to focus really on some of the empirical data that you've generated from the distress thermometer and evaluation of newly diagnosed patients showing indeed that these folks do not have normal levels of stress that you might expect when you are, you know, just screening people or on the street.
So that's been very, very important.
Yeah. And one of the main in fact of the communication skills, training or workshops that I had the great opportunity to share with you is that the role of the cancer doctors, physicians--palliative care physicians, et cetera is not only to understand the level of depression of anxiety. Sometimes also to treat it and to understand how some of this situation can be--actually treated by the doctors without referring them to psychiatrists or psychotherapists. For example, those that are sub-threshold kind of depressive states or moderate states of depression. So without any suicide risk for example not very intense symptoms that as in primary care it could be treated by doctors with the help and supervision in liaison with the psycho-oncology doctors or psychiatrist, but sometimes very much so by the doctor himself.
You've also been involved with the World Psychiatric Association and the subcommittee on palliative care, is that what I understood? And what kind of work are you doing there and what is the WPA--what is their involvement with palliative care?
That's interesting because we are actually in the middle of something as psycho-oncologists because from one side we are trying to work very close to oncologists and palliative care physicians. So palliative care units et cetera in order to have them to understand the psychological problems, the emotional suffering their patient can have and their families can have. And also in order to have them as far as their own suffering and their own emotional distress in dealing with cancer patient all the day, every day for many, many years. But on the other side, we have to convince them to work with psychiatrists that what we are doing is really important. And psychiatrists are really not so used to consider psycho-oncology as a very specific discipline. They tend to consider everything related to consultation, psychosomatic as--and consultation psychiatrist, psycho-oncologist psychosomatic medicine as something less important sometime that than the real world of psychiatry, so schizophrenia, psychotic disorders and that kind of stuff. And this problem should be only addressed and maybe, hopefully solved if you work also in the big society of psychiatry. And the World Psychiatric Association is the biggest one. I don't know how many member it has, but it's a very, very big society involving all the countries and all the national societies of psychiatry in all the countries throughout the world. So it's a challenge because we are working with them in order to show what psycho-oncology has done in--over last 30, 40 years. The data that are coming out, the possible risk of cancer in psychiatric patients having very severe mental disorders, that's important, screening for cancer is exactly the same in psychiatric population as it is today, general population. So we have a lot of issues that are going on within the World Psychiatric Association. And that's was one--is one of our aims. So it's a way to, you know, to close the cycle and working together both and within the psychiatric field and in the cancer fields and creating a bridge between the two.
That's very interesting and important. The last thing I wanted to touch on was the whole idea of truth-telling. In Europe, in European countries and maybe especially in Southern Mediterranean countries that, you know, here in the States that at one time, we didn't tell cancer patients the diagnosis and that evolved to talking to them almost by way of--it's the law that you have to tell people about their illness or you can't start treatment. We still have some problems in talking about difficult aspects of illness like prognosis and end of life and transition to palliative care. Where do things stand in Italy and some of the other Southern Mediterranean countries now with talking to patients and about their diagnoses and prognoses and is the role of families still really powerful in interfering with that?
We can divide this issue to different level. One is the fact that also we have medical codes and laws starting maybe '99, '98, '99 in my country and the same in Spain, in Portugal, in Greece, in France. That it is absolutely necessary to speak with the patient in a very open way. So the problem with truth-telling that was one of our problems in the past is very much changed in the last 10 years. Anyway, the code that real world is a little bit different and when you deal with the cancer patients and families, sometimes we have the problem with truth-telling or not truth-telling only which way we have to tell patients what is going on with him, et cetera. And the family is really important because in our culture the family is absolutely the core and is a system and the patient belongs to a system not just him. So maybe the--some concerns like paternalism, the tendency to consider the patients too weak to be informed, too distressed to be informed completely, et cetera is quite typical of our South European area. That was something also very interesting related to the culture for example in the Southern European psycho-oncology study that we did what came up for example in Portugal was that the score on fatalism in cancer patients was higher than other countries. So there are culture issues really important that should be taken into account. It should be taken into account particularly when we do communication skills training for doctors because the main aim of the workshop is to help them to tell patient the truth without destroying hope and the same time having the capacity to create a very emphatic relationship with them, working on the 4 pillars of communications; honesty and respect, empathy, listening--active listening, and at the same time also to look at the possible emotional symptoms they have. So the balancing in truth-telling is that, it's not part of the medical code and the law so all the doctors should say everything to the patient, but we have also to consider our culture background, but it's a challenge that is taken--has been taken in the last 10 years as I said with a good success. The problem is that still truth-telling is a problem as the patients go worse and they are in the transition between a curative phase to a palliative care situation.
And there are studies that are carried out in Italy showing that in the palliative care area, doctors are really in trouble in telling the truth to the patient. So only 10, 15 percent of the patients in palliative care are really informed about their situation. And most of them are because of their mechanism and denial to protect themselves, but partly because they were not actually ready well informed by the doctors have not informed about their situation.
So the data, I believe that I read some data that shows that the majority of patients are sort of coming around to really believe that they want the information. And, you know, that people aren't quite paying attention to that yet. And that patients today probably if they have cancer that's getting worse, probably really know it. And so that this sort of conspiracy of silence really probably won't last too long because patients would start asking, it sounds like as we say the truth has come out of the closet a bit in terms of what patients want to know. Is that your impression, too?
Yes, it's my impression even they call it conspiracy of silence is something that belonged to the past more than the real situation, the kind of situation in my country at least. It's quickly for doctors that they have to create and close a dialogue and more intimate and they can express all the possible treatment. We can have the problem of sometimes because the medical code says without destroying hope that there are kind of misconception about what hope is. And doctors tend to treat patients in a future way even if it's very clear that the chemotherapy treatment for example is not powerful at all just to know that to give a sort of something to the patients and the family to protect them, to reassure them that there's something that still can be done.
And that's the problem in which--with the communication skills we are working a lot on this.
Yeah, this whole concept of hope is a really important one and, you know, as we've discussed and other people have pointed out that the idea of hope being unidimensional and just being about cure is really a very false belief because patients can still have many other things that they can hope for other than the cure of their illness.
Yeah. We worked a lot on this concept in our Italian workshops and I think that the impression that they--I had and they have is that doctors were kind of illuminated by this fact. And they didn't think about the fact that hope is multidimensional. And they ensure that they are still considering that hope is already, is something related to survival, to cure, to fight cancer et cetera. Now opening up their minds about the fact that there are many other hopes, very profound hopes, very deep hopes, ultimate hopes that are not just related to cure and survival, but also to what's your legacy. What's your hopes for the future for the person that you are leaving? That's really, really important and I've seen that doctors participate in our workshops, were really engaged by that. And that could be a very good example of how a training course like a communication skill course can modify the attitude and the behavior of doctors and bringing what they have learned in a very specific experiential laboratory like it is the workshop to the clinical care and their out-patient clinics, day hospital clinics. You would--patient's unit et cetera.
Well, thank you very much. We've been talking today with Dr. Luigi Grassi who is visiting from Italy to give a lecture next week on Detecting Distress in Newly Diagnosed Cancer Patients. And has brought lot of very interesting perspective from the standpoint of psycho-oncology and what's going on abroad with regard to the psychological care of cancer patients. Thank you very much, Luigi.
Thank you for inviting me. Thank you.
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