ࡱ> e zbjbjJJ ((_b(_bS& ! ! ! ! !$D!D!D!P!<!$D!4/f" #(2#2#2# $ $ $.......$0P3. !' $ $''. ! !2#2#.---'R !2# !2#.-'.---2#z6z'j-./04/-3O+3-+-83 !c-< $$-O%l% $ $ $..+* $ $ $4/''''3 $ $ $ $ $ $ $ $ $B : John C. Liebeskind History of Pain Collection Oral History Interview with Russell K. Portenoy Ms. Coll. no. 127.67 Conducted: 17-18 April 2003 Interviewer: Marcia L. Meldrum Duration: ca. 3.25 hours Pages: iv, 59 History & Special Collections for the Sciences Library Special Collections Louise M. Darling Biomedical Library, UCLA Los Angeles, California 90095-1798 2013 Biographical Sketch Russell K. Portenoy, M.D., is Chairman of the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center in New York and Professor of Neurology and Anesthesiology at Albert Einstein College of Medicine. [2013] Dr. Portenoy received his medical degree from the University of Maryland and completed an internship in medicine at St. Lukes Hospital in New York City. He continued his postgraduate studies with a residency and chief residency in neurology at Albert Einstein College of Medicine and a fellowship in pain and neuro-oncology at Memorial Sloan-Kettering Hospital, where he worked with Kathleen Foley. He is a past president of both the American Academy of Hospice and Palliative Medicine, and the American Pain Society, chief of Journal of Pain and Symptom Management and associate editor of Pain, and section editor of The Oncologist. Dr. Portenoy serves on numerous other editorial boards and has written, co-authored, or edited numerous books, chapters, and papers on pain and symptom management, opioid pharmacotherapy, and symptom assessment Interview History Dr. Portenoy was interviewed at his office in New York City by Marcia L. Meldrum on April 17 and 18, 2003. The interview lasted approximately 4.5 hours. The transcript was audit-edited by Betty Anderson and submitted for review to Dr. Portenoy prior to its accession by the History of Pain Collection. The tape and transcript are in the public domain, by agreement with the oral author. The original recording, consisting of three (3) 90-minute audiotapes, is in the Library holdings and is available under the regulations governing the use of permanent noncurrent records. Records relating to the interview are located in the offices of History & Special Collections for the Sciences, UCLA Library Special Collections. Topical Outline (Scope and Content Note) The interview covers Dr. Portenoys personal story, his work with Kathleen Foley, and his long-time championship of more liberal use of opioids in chronic paina position he is now rethinking (see Wall Street Journal article of 17 December 2012:  HYPERLINK "http://online.wsj.com/article/SB10001424127887324478304578173342657044604.html" http://online.wsj.com/article/SB10001424127887324478304578173342657044604.html. Access to the Interview This oral history interview, in its audio and transcript forms, is held by History & Special Collections for the Sciences, UCLA Library Special Collections. Those wishing to use the printed transcript (which is available through Interlibrary Loan) or the audiocassette version (which is available by appointment only) should contact: History & Special Collections for the Sciences, Library Special Collections, Louise M. Darling Biomedical Library, UCLA, Los Angeles, California 90095-1798. Phone: (310) 825-6940. Terms and Conditions of Use By agreement with the oral author (interviewee), the contents of this interview are placed in the public domain and are made available for use by anyone who seeks to broaden the understanding of pain. However, users must fully and properly cite the source of quotations they excerpt from this interview (see Citation Information). Citation Information The preferred citation for excerpts from this interview is: Oral History Interview with Russell K. Portenoy, 17-18 April 2003 (Ms. Coll. no. 127.67), John C. Liebeskind History of Pain Collection, History & Special Collections for the Sciences, UCLA Library Special Collections, Louise M. Darling Biomedical Library, University of California, Los Angeles. Related Materials in the John C. Liebeskind History of Pain Collection The researcher is referred to the following related materials: Oral History Interview with Kathleen Foley (Ms. Coll. no. 127.14). Acknowledgments Support for the John C. Liebeskind History of Pain Collection and Oral History Program came from the American Pain Society and the . INSERT PHOTO HERE Russell K. Portenoy, MD Neurologist RUSSELL K. PORTENOY INTERVIEW SESSION 1 (17 APRIL 2003) TAPE ONE, SIDE ONE MARCIA MELDRUM: Today is April the 17th, its about eleven oclock in the morning, and were starting our interview with Dr. Russell Portenoy at Beth Israel Medical Center in New York. Good morning, Dr. Portenoy. RUSSELL PORTENOY: Good morning. MELDRUM: Its nice to be able to talk to you, finally. PORTENOY: Thank you. MELDRUM: I thought we would start this interview with your telling a little bit about where you grew up, how many people there were in your family, and what triggered your early interest in medicine. PORTENOY: I grew up in Yonkers, New York, which is a suburb just north of New York City. I was actually born in the Bronx in New York City but grew up in Yonkers, and had a fairly uneventful upbringing until the age of eight when my father suddenly died at home without any warning. It was an episode of sudden death that was completely unexpected. He had no medical problems that we knew about. I dont know for sure whether or not that had a profound influence on my interest in medicine, but I know that from elementary school on I was very interested in both biology in general and in medicine and would read a lot about that constantly. The other area that I was very interested in early on was psychology. In fact, when I first went to college, I went as an intended psychology major, who would make sure that the premed courses were taken along the way just in case my interest changed. I actually became very close to becoming a psychologist but managed to avoid that trap by marrying one. About twenty-six years ago I married a psychologist, and that got me off the hook from that whole career track and allowed me to become a physician. MELDRUM: Did you come from a big family? PORTENOY: No. I had a brother and a sister, with whom Im still very close. My brother is a dentist, and my sister is a physicians assistant, so, again, we come from a family where there were interests in health care. But I have to tell you that I was the first person in my family to graduate college. Im the first physician ever in my family, my brother is the first dentist in the family, and my sister is the first physicians assistant in the family. So there was really no predicting, I think, how this group of people would evolve. MELDRUM: This generation. PORTENOY: Thats right. MELDRUM: Thats interesting. You went to Cornell as an undergraduate? PORTENOY: Yes. MELDRUM: Well, you must have been pretty good at school to get into Cornell. PORTENOY: I guess so. My kids now are college age. My oldest son is in college, and my middle son is applying to colleges. I think it must have been a different era, because the intense focus in 2003 on preparing for college and worrying about college, I dont remember any of that back in the early 1970s. MELDRUM: A different world. PORTENOY: It was. I mean, I knew that I was a good student. I was second in my class in high school, and I knew that was good. My grades were good. I remember having a conversation with my girlfriend at that time, who then became my psychologist wife, and saying, Where should I apply? And she said, Well, youre smart, so apply to the Ivy League, so I did. (chuckles) I had absolutely no idea about differences between colleges. Anyway, it was a totally different world, and somehow or another I made the right choice. I think Cornell was a good school for me, primarily because I was able to pursue that interest in psychology and become a psychology major and go down that track, but at the same time, had enough opportunity to take the biology so that when my decision finally got formalized to apply to medical school, which was about the third year, I had done enough so that it wasnt a problem for me. MELDRUM: Thats good. But your track was pretty much the sciences and psychology. PORTENOY: Yes. MELDRUM: All the way along. PORTENOY: Yes. MELDRUM: Were there any teachers who influenced you, or any particular courses that inspired you? PORTENOY: Well, oddly enough, nothing on the biological and medical side do I remember as really capturing me. I think its one of the unfortunate realities that kids who are interested in medicine need to take a series of introductory and higher level biology and chemistry courses that are over-subscribed and very intensive and high pressure. Many students, even back in the seventies, are under such intense pressure that its difficult to enjoy that piece of your education. Whereas, in psychology, I had a number of really fabulous experiences in college. I had, for example, a professor of abnormal psychology who was really a character. He taught the introduction to abnormal psychology, which was a big course. Everybody took that course. Then my then girlfriend, who would then become my psychologist wife, and I took all of his senior level courses as well. With his help, we had two extraordinary summers at an avant garde institution for the care of extremely ill psychiatric patients. This was a hospital which included about seven or eight individual houses, which were right around the field. Parents or other significant others would bring their loved ones to this place, and they used a form of psychotherapy which was very, very controversial at the time, called direct analysis. There were only a few proponents of this around the world, and one of the proponents had started this hospital. The goal of this kind of psychology was to aggressively push psychodynamic interpretation for patients who were considered to be blocked in some way by the severity of their psychiatric illness. For example, patients with very severe psychotic disorders were not given any medication. They were allowed to live there without medication in high states of anxiety, hallucinations, delusions, and they would have daily therapy with this direct analytic approach, which was very assertive and very dynamic and very controversial, I learned subsequently. Similarly, patients with profound depressive disorders and suicidality were taken off their medications and sent there. The hospital has since closed. I think as psychiatry became more biologic and less dynamic, that kind of hospital, that kind of discipline became even less accepted than it was back then. But for somebody like myself who was interested in the functioning of the mind and the brain, to see patients with schizophrenia who were not in a medicated state, to see patients with bipolar disorder who were not stabilized on medicine was a profound experience, and I did that for two consecutive summers. I remember distinctly, for example, a young psychologist who my partner and I picked up from a big city hospital. At the time that we picked him up from the psych unit, he was taking more than two grams a day of Chlorpromazine, a very strong anti-psychotic. He was taken to the hospital by us and then was given to my soon-to-be wife and myself to work with. All of his medicines were stopped, and the profound nature of his delusions, he had grandiose and paranoid delusions, hallucinations. It was really mind boggling to have that communication with someone who was also very smart. He was a Ph.D. and a psychologist who had had a psychotic break in his twenties, and he was then in his thirties. I had numerous experiences like that, which we still talk about, my wife and I. We still talk about it. We were very influenced by it. And I think it gave me a sense of the profound nature of how the mind works, the relationship between mind and body, the variation, the heterogeneity among humans. The inability to put everyone in one bucket, especially if you dont have them all on Thorazine. MELDRUM: I think it would give you an interesting picture of how the mind -- you could see the mind actually sort of functioning by looking at it break down, in a sense. PORTENOY: This young psychologist who was psychotic -- this is an example -- we learned that his grandiosity took the form, in part, of a profound arrogance so that when he would engage in behaviors like washing his clothes in the sun, which he would do all the time, he would take his clothes out of the house where he was living on a bright sunny day and hold his clothes up so they would be washed in the sun, and then he would fold them up and put them away. We came along as sort of clear thinking homo sapiens and said, Clothes dont get clean when you wash them in the sun. And his response to that was sort of arrogant dismissal. How little we knew, how little we knew. And to see how he compensated for his differentness by taking on an attitude of arrogance. MELDRUM: Right. I know more than you do. PORTENOY: I think it was an extremely interesting experience in terms of now, twenty-five years later as a physician, trying to deal with patients who are enmeshed in illness behavior and trying to understand how a person could be enmeshed in illness behavior and not see that there are certain things that he or she has to do to get out of that. I always thought it was funny, later in training, that among younger physicians, and among some senior physicians, theres a sense that if you tell the patient to do something and they dont do it, its blameworthy in some way. So that if a person is engaging in self-destructive behavior psychiatrically, you should just be able to say dont do that. So if the patient makes catastrophic sounds because the pain is overwhelming and you say, Stop being catastrophic, youre not going to die from this, and the patient still catastrophizes, well, then that makes you angry because the patient should just be able to stop doing what the patient is doing. I dont know if it was those experiences back in Doylestown, Pennsylvania, or something else, but I never was in that trap. Even when I was a very young physician, I just had a sense that if you explained to somebody the context of their behaviors, and you tried to show them that there might be a better way of being, but they couldnt do what you told them to do, it wasnt their fault. It could be their downfall, but it wasnt their fault. And I think that that was probably part of that lesson. MELDRUM: Did this analysis method work? PORTENOY: Its very interesting because, anecdotally, there were cases that got better, and some of those cases were published, and some of those cases were videoed and we saw tapes. But I have to say that in two summers, I only saw one or two patients who in the year interval stayed at the hospital and when I came back the second time were better. But we also saw some really active and scary suicidality. We saw people who were incredibly frightened by their own psychosis. In retrospect, I would look back at that and say it was cruel not to give them medicine, as somebody now whose life revolves around giving people drugs. I believe in drugs. I think pharmaceuticals are a great gift to humankind. I remember taking care of a very psychotic young man who was about six-eight and three hundred pounds. He had been incarcerated numerous times for violent behavior. He once tried to attack me, which was a very scary episode. And he escaped from the hospital on two occasions, which mobilized the state police to bring him back. Then underneath all of that anger and underneath all of that violence there was terror, and it was clear, and you could see it. Sometimes it was all terror and not anger. Yet, in that hospital, in that environment, that methodology would not ever treat that with medicine. I look back at that and say terror is a bad thing. If one can attenuate that medically without eliminating the humanness or without causing people to -- MELDRUM: Because its so hard to cut through that. PORTENOY: When someone is psychotic, the logical connections that allow you to cut through it, they dont work. So I think, in retrospect, the technique of direct analysis wasnt really supported as something that works in the very critically ill psychiatric patient. And nobodys doing it nowadays. But as a training environment for a twenty-year-old college student, it was a pretty amazing summer. MELDRUM: It really sounds like it. Wow! I know that your fianc was going to be a psychologist, but after having this amazing experience, you nevertheless decided to go into the more physical side of it, into medicine. PORTENOY: Actually, I went to the University of Maryland. MELDRUM: Oh, right. And you were taking a psychiatric track there. PORTENOY: Thats right. At the University of Maryland, there was a unique program, which was called the CAPP, Combined Accelerated Program of Psychiatry. Its the only one like it in the country. I signed on to that in my first year. What the CAPP program was designed to do was to give medical students an experience in psychiatry equivalent to the first year of psychiatry residency. In fact, if one took the residency at the University of Maryland, they carved a year off for CAPP experience. So throughout my first two and three years of medical school, I actually was doing supervised individual psychotherapy, group therapy, taking extra courses on theory. I had a very interesting experience and, again, Ive look back at this and wondered how ironic the world is, because the University of Maryland, at that time, in the late 1970s, was not only the only medical school to have the CAPP program, but it was also one of the latest to change to a biological focus. The senior faculty who taught in the CAPP program were all analysts. So I had this experience of immersing myself into biology of medicine, taking all of the first-year and second-year courses that medical students took, and at the same time, going to these courses where these extraordinary analysts would talk about the philosophy that is Freudianism. (chuckles) I found it fascinating but totally disconnected, totally disconnected. I struggled with that. I remember so vividly that I struggled with that as a second-year medical student, enjoying the interaction with patients, which was a psychiatric-type interaction with patients, but feeling that at the medical level there was something that didnt connect, because here I was learning pathology. The second year the major courses are pathology and pharmacology, so I was learning disease processes and trying to understand what happens to organ systems and, at the same time, two hours later, very philosophically trying to understand mind-body. What happened is that I had a little an epiphany, which was when I took a neurology course in the second year. I realized that there was a sub-type of neurology called behavioral neurology and that I could, in fact, maintain a focus on mind, maintain a focus on behavior, but also try to understand it at a level of whats happening in the brain. I started to read everything I could find about behavioral neurology, which was really a sub-specialty in its infancy back then. I was completely turned on by it, and I made the decision in my second year that I would become a neurologist so I could do behavioral neurology. And that was what I was going to do. MELDRUM: Okay. So you were pretty focused. PORTENOY: And my wife was happy because I wouldnt be competing with her, because she was going to be a psychologist, and we wondered how we were going to set up private practices next to each other and compete constantly. So she was happy and I was happy. I went through medical school and got a neurology residency and said, Here I go. MELDRUM: So you were pretty happy. PORTENOY: Yeah. It was exactly a field that I thought that I could pursue from a clinical prospective and also an academic prospective. I thought I was all set, until I got to my residency. MELDRUM: Was your wife at Maryland also? PORTENOY: She was at American University in Washington. MELDRUM: But then you came back to New York for your residency. Was that happenstance? The match program sent you there? Or was that where you wanted to go? PORTENOY: There was no match for neurology back then. It wasnt totally happenstance. I had a choice between Boston and New York, and I ended up being given the opportunity to decide in four minutes. I had two phone calls from two program chairs, who basically said, You have four minutes to decide. That was a very stressful four minutes, let me tell you. MELDRUM: I can imagine. PORTENOY: I dont know exactly why I chose New York, but I remember sitting around the kitchen table, and my wife was there, and looking at my watch and saying, I have four minutes to make this decision. She helped me, as she always has, and we ended up in New York together. MELDRUM: Thats great. So you got married after college? PORTENOY: First year of medical school, 1977, right. MELDRUM: But you didnt have any children at that time. PORTENOY: No. MELDRUM: And you moved to New York and both started your residencies, I guess. PORTENOY: Right. MELDRUM: And you went from St. Lukes? Am I right? PORTENOY: Yeah. I did a one-year medical internship at St. Lukes. MELDRUM: And then you went to Albert Einstein. PORTENOY: Right. Did a neurology residency at Albert Einstein. When I was at Albert Einstein, very early in my first year of residency while I was meeting all the faculty, I had a chance to meet Dr. Ronald Kanner. Dr. Kanner had just joined the faculty at Einstein after completing a one-year fellowship at Memorial Sloan-Kettering Cancer Center with Dr. Kathy Foley. At that time, there were only two places in the country that a neurologist could go for a fellowship. These were non-accredited fellowships, of course, but if you were interested in pain and you were a neurologist, you could go to San Francisco to work with Dr. Fields or you could go to New York and go to Dr. Foley. Dr. Foleys program at that time was -- her specific program was very young. She had only been there a relatively short while. But she was in the process of building it, and Dr. Kanner, Ron Kanner, spent a year there and then went back to Einstein to start a pain program. I remember very distinctly meeting him, and hes a dynamic guy. I asked him what he did, and he said he does pain. I laughed, and I said, Thats silly because pain is a symptom, its not a disease. You cant do that. He assured me that, no, indeed, you could actually do a symptom. (chuckles) If you didnt have to do dementia or do movement disorders or do stroke, you could actually do a symptom. I really had a second little epiphany. I was very much fascinated by that. That was something that just really captured my imagination. From the very first year that I was at Einstein, I would hang out with Dr. Kanner. I went to his clinic to watch him do his work, and he and I began to do some research projects together. I did some research as a resident, which, again, was quite uncommon for residents, but I knew I was interested in academics. Again, Ron is so dynamic and so interested and so supportive and collaborative that he and I started to do some things together. I began to give some lectures. In 1982, while I think I was still only a second-year resident, he dragged me to go to the American Pain Society meeting. I think that was probably maybe the fourth or fifth Pain Society meeting. MELDRUM: Yeah. It was pretty young at that time. PORTENOY: Oh, it was a terrible meeting. Even then I knew that the curriculum for that meeting was just not up to snuff. I knew that even then. But I was very much taken by that field, just amazed, and that really has carried through until the present. MELDRUM: So what was it about pain? PORTENOY: You know, I dont know. It must be very deep, because its not a simple answer. At a superficial level, the issues of pain, for me, was like the best that you could hope out of that whole field of behavioral neurology I was interested in, because there was the behavioral part, the mind-body part, but it was so linked to what was happening in the nervous system. The science of pain, meaning to say the elucidation of pain, physiology, and the path of physiology was really not far along then. It had begun to gallop forward, but really, the last twenty years, compared to the twenty years before that, has been so dramatic. I remember distinctly, just as an example, asking Ron Kanner one day, Im interested in this. Do you have any papers that I should read? He went to his file and he pulled out the paper by Melzack and Wall on the gate control theory. He said, Here. Read this. This is sort of interesting. Everybody knows about this. I remember reading that and being totally fascinated, just turned on by this linkage between this human experience and something that was happening at a molecular level, at a cellular level, in the spinal cord. I said, Oh, my gosh! You can deconstruct this and really understand it and help people. I think the helping people part also really was exciting to me. Pain management is really one of those white hat disciplines. The world can be crashing -- the same is true for palliative care. The world is crashing for an individual, for a family, and the pain management specialist who knows what he or she is doing can go in there and find a way to offer something that -- it doesnt provide comfort, it provides hope. In contrast, those doctors who focus on diseases, they get into this terrible habit of saying we have something, we have something, we have something. Well, sorry, we dont have anything. Which is awful, and it reflects, I think, a deficiency in medical training because, as a physician, you should understand that youre always offering something if youre offering yourself, so you never have nothing. But if youre very focused on a disease and sort of view the human body as a car youve got to fix the parts in, at some point you cant fix it anymore, and you get into a dynamic which is very depressing for the clinician as well as the patient. For a pain specialist and a specialist in palliative care, its just the opposite. The more miserable you are, the more I got to do. (chuckles) I always felt it was great. Also, I must say that I was looking at a very, very good clinician in Ron Kanner, very adept in terms of the psychiatric issues and interviewing skills and communication style. He taught me a tremendous amount about how you take a history from somebody whos in pain. Those were the things that I got interested in. I was fascinated from the start. MELDRUM: Now, at Einstein, it wasnt a cancer center, or were you seeing cancer patients or patients with different types of pain problems? PORTENOY: Mostly it was patients with chronic nonmalignant pain. I also became a moonlighter at the headache center, which is a nationally known headache center, so I did a lot of headache. And very little cancer pain. So, yeah, I think my original experience when I was in training was not with cancer, and I really didnt get into cancer until I did my fellowship. MELDRUM: I may be wrong about this, but cancer pain is, in a sense -- its thought of as something almost apart. Its somehow such an integral part of a progressive disease; whereas, the other forms of pain, somehow they have this pain entity about them. But cancer pain is so intimately attached to the disease itself. I think for many people treatment of cancer pain, therefore, becomes much more acceptable than treatment of RSD or postherpetic neuralgia or some of the other disorders. Im hypothesizing. You tell me. PORTENOY: I wouldnt say that its an acceptability issue, but I think its a paradigm issue. I view myself as a person who is a specialist in pain management and a specialist in palliative care, and I view them as two big overlapping circles of expertise. For a person to know palliative care, its essential that you know pain management. But as you just said, for a person who takes care of patients with a progressive incurable illness, to think the only game in town is comfort is wrong. Comfort is critically important, but its not only going to be provided by pain management, theres a host of other symptoms. Then there are psychological and familial and psychosocial considerations and spiritual concerns and communication issues and ethical issues and managing the dying process. None of those things are things that the pain specialists learn. In contrast, the population with chronic nonmalignant pain, which is not linked to a progressive incurable illness, brings to the clinical encounter some real challenges that the palliative care specialist doesnt really have. So to be able to understand processes like illness behavior in relation to a chronic pain problem and catastrophization and the family problems that occur, and the whole concept of pain-related disability apart from palliative care, is another type of expertise. I have a diagram that I love to draw about five thousand times a year for trainees. Its a diagram which on the left side has the word pain and on the right side has another bubble, and in this bubble I put either the word suffering or disability or both. The diagram is a diagram thats supposed to cue them into the process of assessment, because on the left side, the bubble with pain has the factors that may be contributing, that may be nociceptive and neuropathic or psychologic. And on the right side, the factors that may be contributing to disability or suffering include the pain but also include a variety of other things: independent psychological problems like depression or panic disorder, family problems, money problems, spiritual distress. So a person whos interested in pain or palliative care could look at the schematic and just by switching the word from suffering to disability you can make a different set of points. But the fundamental structure of the paradigm with pain as a process that contributes to a larger construct, whether you call that suffering or disability, that construct, that paradigm, is the key paradigm because it tells the trainee, or anybody, it tells people that you cant assess a patient with pain in isolation from the broader constructs of their life. In many ways, the decision to call what pain patients do disability and to call what cancer patients do suffering, its an artificial distinction. I think it was actually very interesting, when I was allowed to set up this department that I now chair, which was the first full department devoted to pain and palliative care, there were many questions about whether or not you bring in the two disciplines together, whether theyd end up being just parallel processes or are they truly linked. I had no concerns that we could do this, absolutely none, because, to me, there is a fundamental paradigm that makes sense, and then what you have to do is just to make sure that the distinctions are clear, and also from a clinical perspective, the distinctions lead to the access to services that the patients need. So for palliative care patients, you have to make sure that you have the methodology to provide help for spiritual stress and family needs, and so forth; and for the pain patient, you have to make sure you have access to the system that allows you to get at disability. But from the understanding point of view, theyre just one big thing. MELDRUM: Thats a good way of explaining it, I think. I know Kanner primarily, I guess, for the work he did on opioid therapy. What was the pain picture like at this time in New York? What did you have available to give patients? PORTENOY: In terms of the pain picture, there were a few pain programs that were trying to develop clinical models for pain as a specialty. There was a service down at NYU, for example. Bert Wolfe was down there, and a few other people were down there. There were a few other services popping up in New York, but there werent that many multi-disciplinary pain management programs. MELDRUM: Not anywhere in the country. PORTENOY: Thats right. This, of course, was when I was a resident. Then I went away for a fellowship, and then I came back to Einstein to co-direct the pain program with Ron Kanner. We tried to set up a multidisciplinary program that would be at two hospitals and provide a whole range of services, but it was very hard. Because just like now, getting people to collaborate when there isnt any dedicated funding to create these models, its very difficult. In terms of what we could prescribe, its very interesting to me looking back over a couple of decades, because there were, of course, opioids, and my experience at Sloan-Kettering, and Ron Kanners experience as a fellow at Sloan-Kettering, gave us a comfort level with opioids that was not shared by anyone anywhere. Opioids generally werent used for pain, for chronic pain. We used some. Not that often, but we used some. Then in terms of the so-called agitant analgesics, its been such an extraordinary twenty years. Back then, if someone had postherpetic neuralgia, what was being written about was using an antidepressant, like amitriptyline, and using an anticonvulsant like carbamazepine, and there wasnt that much else. Nowadays, we have probably fifty, sixty drugs to choose from, some of which are more supported by data that others, but all of them are in clinical use. Back then, it was really two or three drugs, and if they didnt work, you were in trouble. Physical therapy, psychological interventions, they were there then. The influence of Fordyce on pain psychology had really happened already. There were people who were beginning to do pain psychology, and that was good and exciting. Interventional strategies, like injections, doing infusions into the spine. Even they were, back then, available, but they just were not done very often. I think there was more neurosurgery going on in terms of trying to cut nerves. The downside of doing that really wasnt too evident back then. MELDRUM: Lets just go over the chronology. You went to Sloan-Kettering for a year and did a fellowship there. PORTENOY: Yes. MELDRUM: And that was with Kathy Foley. PORTENOY: Yes. MELDRUM: Do you want to say just a few words about Kathy, and also about -- did you work with Ray Hood and Ada Rogers then? PORTENOY: Yes. MELDRUM: I would like to know about them. PORTENOY: Yeah, sure. I had a very wonderful, actually, eighteen months. I had a special dispensation from my program director at Albert Einstein, who let me take all of my elective time in my last year and apply it to my fellowship, so I actually spent, I think, fifteen months, something like that, at Sloan-Kettering. I had a wonderful experience, very tiring but very wonderful. I feel very fortunate to have that experience. Kathy Foley, at that time, was really just beginning to have a very strong influence nationally and internationally, and was also actively involved in a research program. We actually didnt do too much together clinically. Its sort of interesting, I think. After Kathy realized that I wasnt going to hurt too many people, she really let me on my own. Nowadays, it would never have passed muster because we have a requirement now to make sure that residents and fellows are very closely supervised. But back then, I was really given free rein. She probably doesnt remember this, but I tease her every so often that we probably did rounds twice that year. I still learned a tremendous amount, and I still believe that the cancer population is a good learning context for pain management; although, it has to be complemented, obviously, by experience in nonmalignant pain for the pain specialist. But what the cancer population allows one to do is to get very good at the process of assessment, if youre open to learn that, and also very good at understanding the relationship between pain and disease. Then, of course, the last piece is that, if youre given the right training, you could get very good in understanding the nature of palliative care, what thats about. So I think my experience with Kathy was just incredibly favorable. Shes a smart, dynamic, supportive person. I had one experience, I think, which really is emblematic of Kathys personality, and that was that I was the consult fellow for about six or seven consecutive months because there was only one fellow, and that was me. In fact, ironically enough, I was so nervous about getting this position, and only later did I realize I was the only applicant. I was the only applicant to the fellowship, and I became the only fellow, so I did the consult rounds all by myself for many, many months. There was a second-year fellow, who was Dwight Moolan(?). He had been there the year before doing the consult rounds, and now he was moved into a research position and I was doing the consult rounds. After being on the consult team by myself for a number of months, I got very tired. I actually had the experience of early burnout, which I didnt recognize as it was going on. In retrospect, it was a very good experience because, having had that identified and quickly dealt with, I was fine. But I realized that people can get into trouble and what happens with burnout. What happened, basically, was that I got very tired, I felt very stressed by wanting to pursue my research at the same time as take care of patients. I would get into the hospital very early, before six oclock in the morning. I would do rounds, and then I would do my research. I began to avoid going into patients rooms unless I was forced to go into patients rooms. I began to turn down some consults. I began to not be able to have conversations with patients; I would cut them short. After this went on for a while, I was having a meeting with Kathy, and she looked at me, and she said, How you doing? as she would every so often, because we werent doing rounds together. And I said, Im okay, Im fine. She said, You look tired, and I said, Well, you know, Ive been doing consults consecutively for six months. Im pretty tired, but Im okay, not to worry. And she said, Im going to ask Dwight to take next month just so you can finish what you need to finish and get some rest. I said it wasnt necessary but that would be great, and Dwight agreed. Another wonderful person. I got my batteries recharged in that month, and I was fine. In retrospect, looking back, after that month, realized that I desperately needed that month. I learned something about being a mentor, because it means being able to make sure that the negative things youre seeing arent being driven by the need for support. When I got to Memorial, I knew I wanted an academic career. Ray Hood and Robert Kaiko and Ada Rogers were there. Ada was running a group of nurses doing studies of, I think, about three or four nurses. I had a series of really wonderful experiences with Ray. I realized that I wasnt going to be a bench worker, that I wanted to do clinical studies. I wasnt really set out to do any kind of basic research. I went to Ray and said, Do you think that you can help me learn something about clinical trials? He was effusive in saying yes, really a lovely person. He asked me to come down to his office so that we could go over some things. I went down to his office, and the first thing I noticed was that there was rack full of his reprints of the clinical trials that he had done to create the equianalgesic dose tables and other trials. I began to grab all of these reprints, and I had about ten in my hand. Then I went into his office, and I said, So, whats a relative potency study? It was as if Id pushed a button. (chuckles) For two hours, I got taught what a relative potency study was. He grabbed a piece of paper, and he showed me the schematics of the graphs that were done when one looked at dose response, and how the shifts occurred with dose response relationships as greater dose studies were being done. What he didnt realize was that I lost him after about fifteen minutes. I had absolutely no idea -- I was much too awed and respectful and scared to say, could you repeat that. Also scared that he might repeat it. I literally remember this vividly that he was throwing around statistical concepts and methodological concepts that were so far above my level of understanding at that time that I honestly didnt get it. It just flew right over my head. But I didnt tell him. Instead, I went after that meeting, and I read all of his articles. That was good. Then I did something that nowadays people cant do, either, which is I began to ask permission to generate protocols. I began to discuss ideas for studies with Ray and Bob Kaiko and Kathy Foley and Ada Rogers. Then I would write the protocol. Some of those protocols led to studies that we did, and some of those protocols didnt. I must have written thirteen or fifteen protocols during that one year. That was a tremendous learning process from the perspective of clinical trials methodology, because all of those protocols would be edited by Ray and filled with that little script, this wont work, this wont work. So I learned a tremendous amount. I also had the pleasure of working very closely with Chuck Inturissi. Chuck and Kathy had forged a relationship. He was at Cornell in the Department of Pharmacology; Kathy was at Sloan-Kettering right across the street. Kathys first NIH grant was intended to look at the relationship between plasma concentration of drugs and effects, which was where Chucks interest was, and his capabilities in doing assays of drugs in biofluids. So I began to do those studies with them. That was again a great experience. I did a series of studies in that one year of fellowship when I was also doing the clinical work. I did a series of studies where patients with severe cancer pain would have an IV plugged in, and then they were given a rapid infusion of an opioid, and we monitored what happened to their pain as the infusion was going in. That was a wonderful experience from the perspective of seeing the response to opioids and learning methodology. By the time I finished my fellowship, I had actually been able to start or write more than ten scientific publications. It was a big jump start in my career, and I had this wonderful training experience with these great people. MELDRUM: Amazing group of people, it really is. Now I have a bunch of questions. Just touching on the continuous infusion study for a minute. There was an interest in the relative roles of morphine-6-glucuronide and -- the pharmacokinetics of heroin, which I think that study had just been done a few years earlier, when it was sort of more or less determined that heroin was an inefficient way of getting morphine to the patient. I mean, that in itself is sort of a revolutionary finding. I dont know too much about the part about morphine and morphine glucuronide. Whats significant about this? PORTENOY: Well, this was after I went back to Sloan-Kettering as an attending. END OF TAPE RUSSELL K. PORTENOY INTERVIEW TAPE ONE, SIDE TWO RUSSELL PORTENOY: This was actually after I returned to Sloan-Kettering. Id been away for a couple of years, and then I was offered a position back. In fact, I was given a title. One of the things that I was supposed to be attracted to about the job is Id get the title that used to be Ray Hoods old title. So I was given the title of Director of Analgesic Studies. MARCIA MELDRUM: Thats cool. PORTENOY: Yeah, that was cool. I went back and began to collaborate very actively with Chuck Inturissi and with Kathy Foley on these studies of pharmacokinetic, pharmacodynamic analysis. There were many reasons that this was interesting. First of all, very little had been done to actually evaluate the relationship between the amount of drug in the body and the effects experienced by patients. In fact, we still dont know all that much about it, to be honest with you. With respect to morphine, it was very important because there was some new information that some of the side effects, and possibly the analgesia, caused by morphine might not be due to the parent compound, morphine, but actually due to the metabolite, morphine-6-glucuronide. A little bit while later, there was actually some concern, which is still being discussed today that another metabolite, called morphine-3-glucuronide, might be associated with much of the toxicity. So there was a real interest in trying to determine the relative roles of the parent compound and those two metabolites. There was even thinking that perhaps we ought to develop morphine-6-glucuronide as a drug, independent of morphine, if it turned out to be a strong analgesic and had fewer side effects. Gav Pasternak, who was also in the department at that time, was doing basic studies of morphine-6-glucuronide and morphine. Chuck Indurissi and Kathy Foley and myself did a clinical trial where we administered morphine as a continuous infusion to patients and then measured the amount of metabolite that was in the blood, along with the amount of drug. We published several papers on that. I think we were able to show, like several other groups around the world, that M6G does have some effects, that in situations where M6G, morphine-6-glucuronide, accumulates, like amino failure, it may have unexpectedly severe effects or unexpectedly potent effects because the concentration is much higher than you would expect. I think the profound interest in that compound lessened over time. People sort of began to say, wheres the beef? (chuckles) But even having said that, I just reviewed a paper for a medical journal just two weeks ago, which was another study of M6G, so its still out there. People are still interested in it. Only twenty years later. MELDRUM: I think that quest -- if we could just find some way of sort of breaking some parts of morphine off. Theyve been trying to do that for such a long time. PORTENOY: I think the bottom line is that these drugs are fabulous compounds. Theyre really natures gift to humanity. But people pay a price, and they pay a price in terms of side effects. What is becoming increasingly important in the last few years is recognition that some people will pay a price in terms of addiction. So the quest thats really been driving a lot of this research for many decades is, Can we find drugs with similar efficacy without the likelihood of producing so much toxicity. Its so interesting as you look back, when meperidine first came on the market, Demerol [meperidine hydrochloride], it was touted to be a non-addicting opioid. Heroin was first touted to be a non-addicting opioid. The agonist-antagonist drugs, like butorphanol and nalbuphine, were developed in order to create a non-addicting opioid. Unfortunately, at the time that I joined Sloan-Kettering, right about the time, there was a huge epidemic of Talwin abuse in the Midwest, and there was a sudden wakeup call that this drug had been created and was said to be non-addicting, but nobody told the addicts(both laugh), who rapidly became addicted to it. I think the quest in some of this PKPD stuff that we were doing and others were doing was really to say, how do these drugs work? Can you distinguish between effects and side effects? Might there be a way in the future of delivering them in a different way, or developing different compounds, or attenuating the side effects by combining them with other drugs and make them easier for people to take? And that quest is absolutely still going on today. MELDRUM: It doesnt go away. Now, just at the time you were at Sloan-Kettering, Kathy Foley had been participating in the WHO expert group to develop what became the analgesic ladder. The ladder methodology, according to the people in England, is specifically the methodology developed by Saunders and Twycross, specifically Twycross, at St. Christophers. They contrast it with single dose studies, for example. They say that single dose studies might tell you something about relative potency, but if you want to know how to treat patients, then regular giving by the clock, never allowing the patient to come to the level of knowing algesia, is really the superior therapeutic method. I wondered if you have any thinking about that, or if you could tell me anything about what people at Sloan-Kettering were thinking at the time. PORTENOY: I think there was a strong recognition, even back then, that there needed to be parallel tracks with respect to the opioid drugs. One track was preclinical work to try to understand what these drugs were doing at a basic science level. The second track was clinical pharmacology, which is what we were doing studies on and what Ray Hood had done studies on in all the relative potency studies. And the third track was clinical guideline development. The analgesic ladder was an approach to develop a clinical guideline which would be internationally acceptable for cancer pain. It became, as you know, a very, very potent tool for education, even though it had back then and has now very significant deficiencies as a guideline. In fact, nowadays, clinical guideline development has become a little science in itself, and the approach to that guideline would never have passed muster now. As a guideline, its a flawed guideline, and many people have really thrown it out and said we shouldnt go there. I have always felt that if you view it as a guideline that should be followed step-by-step, youre in trouble; but if you view it as a teaching tool, it would help you understand a model for giving medicines to sick people. Its a wonderful tool, and its very easy to teach people from. I think that at Sloan-Kettering itself there was no tension at all, because we had all three things happening at the same time in our little group. Gav Pasternak was doing preclinical studies; Chuck Inturissi, working with Kathy and myself, was doing clinical studies; and Kathy, and then later myself, became very involved as educators in pain management, with a strong focus on opioid pharmacotherapy. There wasnt a feeling that this was a disconnect. And yes, most of the things we taught were not evidence-based, but thats because there was no evidence, and it doesnt mean that there shouldnt be evidence. We always thought there should be evidence, and the proof of that was that we took all this time to try to do research. Of course, there was some tension with some colleagues in the UK over silly things, like whether the relative potency of morphine was three-to-one or six-to-one. Arguments that erupted at meetings were so misplaced. Looking back on it, it was nonsense. It was the tempest in a teapot. If there was tension from the other side -- and you may know more about that than I do -- I dont think we really felt it. I also dont think at that time that we were as aware as myself and all of us became later on about the limitations of the analgesic ladder. Maybe there were tensions later on as some of that came out, but at the time, in the mid-eighties, I didnt really feel any of that. MELDRUM: As you say, the analgesic ladder, I think you sort of put your finger on it. It is a wonderful kind of model and so easy to show people and to explain to people, but it doesnt necessarily transfer -- its not something that you can black box into any clinical setting. PORTENOY: Thats right. I think theres huge differences among teaching tools, guidelines, and clinical pathways or decision trees. One of the concerns among many people doing pain management was the complete elimination of interventional approaches in that model. That was clearly intentional, because they wanted to make the model internationally acceptable and easy to use and appropriate for the largest numbers of patients, but it wasnt to say that patients shouldnt be getting nerve blocks, and they shouldnt be getting spinal infusions. MELDRUM: Well, it doesnt say that if you actually read the entire little booklet. PORTENOY: Thats right. MELDRUM: You and Kathleen Foley did a study on opioids and nonmalignant pain, which I think is probably considered to be very important in the literature. I have a copy of it, I spend time reading it. It was a study of thirty-eight patients, and what I get out of there is that it was definitely saying its not just cancer patients that can benefit from opioids. Weve taken these thirty-eight patients and weve given them opioids, and only two of them developed an addiction problem, and those two had a past history. On the other hand, only twenty-four, which is about two-thirds roughly of the patients, did get relief. It seems to me that sort of lays out the problem in a lot of different ways. I wonder if you wanted to comment on that, and sort of where the study came from. PORTENOY: Its one of those interesting phenomena where what should have been a little paper turned into an important paper. It was Kathys idea to do. I was actually looking around for something to study, and Kathy said, Why dont you review our experience with nonmalignant pain? Again, I think it was Kathys tremendous insight into the sociology of medicine at that time. She had a sense that we had to be very smart about writing the discussion section. Really, what it was was a very simple survey of clinical observations. It wasnt a study, and it was retrospective, and it was weak, weak, weak data. Nowadays, we would, I think, call that level five data. It was the weakest data there is. In fact, the paper was rejected. The first time we sent it to the Journal of Pain, it was rejected by Pat Wall. I was a young -- was I a fellow then? It was in 1986, so I think I was still a -- yes, I guess I was a fellow. So to be rejected by Pat Wall was a devastating experience, and I immediately wanted to bury my head. Instead, Kathy read the reviews, and she said, Theyre not reasonable. Write back and tell them its wrong, were going to resubmit it. (chuckles) I dont know if she remembers that. I wrote a letter, and we both signed it and basically asked Dr. Wall if he would re-review the paper because the reviewers didnt get the point. The point was, basically, to show a phenomenology, to illustrate a phenomenology that experienced pain specialists like us knew existed but was being doubted in the field, and also throughout medicine, and, in addition to that, was being gainsaid by other clinical observations to suggest that drugs always produce problems. So there were a series of papers that were coming out of places like the Mayo Clinic published around those times that were observations of a different type of patient, suggesting that people who took opioids were doing poorly, and they were becoming addicted, they had side effects that didnt allow them to function, and they always needed escalating doses, and they did much, much better when the drugs were taken away. That was the key message of those papers. If you put a person into a pain management program and you eliminate the drugs -- detoxification was part of the program -- and if you did that, then these patients did better. What Kathy Foley and I were trying to do with that paper is not to say that those observations were invalid, which got misunderstood initially, in those early years. It was never to say that those observations were invalid, but it was to say that heres another set of observations, that patients being treated by Ray Hood for more than a decade on opioid drugs, patients that I had begun to treat for more than a year, and patients that Kathy was treating for more than five years, who were taking these drugs in a responsible way, not needing to escalate the doses, maintaining good pain control, and functioning better, at least from what we could see, as a result of the therapy, and not developing aberrant behaviors that would be consistent with abuse or addiction. Thats what we wanted to do, and it should have been a little paper like a snapshot of a clinical experience and published and promptly forgotten. Of course, Richard Sternbach wrote a scathing letter to the editor afterwards, which, as a young physician, as a young academic physician, I had never even seen a letter published that attacked authors the way that his did. Later on, we made amends with each other. We had never met at that point. But he wrote a letter that basically said that these people from Sloan-Kettering didnt understand the nature of pain, that we thought pain was all biologic and we didnt understand it. There was a psychologic and behavioral component to pain, and that because we misunderstood and thought pain was always biologic, we thought that opioids would always work, and we were advocating that therapy. I wrote a response to that, and from that point on, that generated a tremendous dialog in the field. I lectured very extensively on that topic, and Im still very involved with it. My department now has a program on pain and chemical dependency. Now were hosting international conferences on pain and chemical dependency, the sixth conference coming up next year. It all boils down to a series of observations that started back in the mid-eighties and really have a message. And the message is that people are different one from another and that if you use drugs that have addiction potential, and you use drugs that have a side effect liability, you have to recognize that some people will do well and some people wont do well. And you have to recognize -- I think this was another point that we tried to make in the paper -- that the potential for bad outcomes isnt inherent in the tablet or in the injection. Its not inherent in there. These drugs have certain characteristics, which, when interacting with a certain kind of brain, can lead to bad outcomes; but its not inherent in the pill such that everybody given that pill becomes an addict. I think it was really interesting, the experiences I had in the late 1980s and early 1990s in terms of the anger that that paper generated, and people buttonholing me at conferences and telling me that I was a bad guy (chuckles) and stuff that makes that even sound good. It was really an interesting time to live through. MELDRUM: That was specifically because you were talking about nonmalignant pain, right? PORTENOY: Correct. MELDRUM: Because the use of opioids in cancer pain gets this kind of dispensation. PORTENOY: Thats right. MELDRUM: Sort of going back on that a little bit, its not inherent in the tablet because patients vary. Theres so much individual variability between patients. Im not trying to be judgmental about this, but, surely, theres also a critical role about the way the physician manages the drug itself. PORTENOY: Yeah. I think that in 2003 the understanding of addiction is that its a disease, a biologic disease that has a genetic component, a situational component, a psychological component, and a component related to access. All of those components have to be lined up, and then a person has to have a drug with the potential to release the changes in the brain that subserve addiction. Its the access piece, which the physician can control to some extent. In the last few years, at least in the United States, theres new discussion about the need to approach opioid drugs from a position of balance, and balance is the new catchphrase now for both the medical professionals and those in the law enforcement and the regulatory communities. This is really very new, but what were trying to say is that physicians have to feel completely empowered and comfortable that they can use these drugs for legitimate medical purposes, but physicians have an obligation to understand that these drugs can be very bad for some people, and negative outcomes occur, iatrogenic addiction happens. At the same time, those in the law enforcement and the regulatory community have to be allowed to pursue what they have to do, which is to try to stop abuse and misuse. But they also have to understand that doctors need reassurance that they need to do what they need to do. This kind of balance is what were coming from now. From the perspective of the physician, its this issue of access and the assessment of the individual where we can play a role. Again, I hesitate to say that most of this has to happen in the absence of evidence, which makes it very hard because theres no data. On the other hand, when Im teaching about this, I like to usually shoot out three or four clinical scenarios, and you see the good physicians in the audience immediately connecting. I say, for example, you have a person come into your office, hes twenty-two years old, he has post-traumatic pain in the knees since surgery a year ago. You ask him some questions. You find out that he had a problem with marijuana in college and hes still using it weekends, hes got a family history of alcoholism in his father and his brother, hes got tattoos on his arms and his back, and he tells you hes in very severe pain. Where would you position opioid drugs in relation to other therapies for that pain syndrome? In contrast, if you have a seventy-five-year-old woman with bad osteoarthritis of several joints who has had a bleeding ulcer and comes in reporting pain, and your history demonstrates that the patient has been a teetotaler for sixty years, has no family history of addiction, and tells you that she would rather do anything but take a pain medicine, where would you position the trial of opioid therapy for that person? Would you position them in an identical place in the clinical _____? Youd have to be a pretty stupid clinician to say, oh, yes, they both get them first or they both get them last. It makes no sense. So thats the assessment piece. Then the access piece, which is what you alluded to before, is, suppose you decide to give that first gentleman an opioid. Would you prescribe that opioid with a three-month supply, tell the patient that he should start with one pill and increase it as much as he needs and then give you a call in a month? Or might you prescribe one week and tell the patient to come back and find out if theres any sense at all that hes lost control, if hes acted irresponsibly? And would you do the same type of prescribing, in terms of the structure of therapy, with the eighty-year-old woman? The answer is, well, of course you wouldnt. I like to think that weve come a long way in understanding how one can use these drugs in a way that minimizes risk. Although, the sad thing is that thats not out in the community yet. Were in a situation, I think, of just now creating the learning methodologies to try to get health care doctors and pain specialists to use these drugs in a more sophisticated way. But a big difference from the eighties. MELDRUM: Yeah, twenty years ago. Okay. So, switching gears just a little bit. Theres a paper that you wrote fairly early on on postherpetic neuralgia, which got a lot of attention after Dave Letterman had shingles. (chuckles) And you seem to have a continuing interest in pain in the elderly, so I just wondered if you wanted to talk about that a little bit, if that produces particular forms of illness behavior, particular problems. PORTENOY: Ive had some interest in pain in the elderly and palliative care in the elderly and some continuing interest in neuropathic pain. The paper on postherpetic neuralgia was just a review, which, interestingly enough, back then I did by actually going into the bowels of the library and opening these dusty volumes of thirty years ago. It was very interesting. I dont think people do history like that anymore, but thats how I wrote this review. I actually looked for and found the papers from the twenties and thirties, and I read them. In terms of the elderly, Ive had some interest in the elderly but not as a primary research interest until just recently when I participated in a study of symptom distress, including pain, and other factors that are experienced by elderly patients with advanced heart disease and lung disease. Weve just actually completed a longitudinal survey over two years of a population of patients who had advanced medical illness, looking specifically at symptoms, including pain, and, obviously, found out how devastating symptoms are in this population and how the support is inadequate and assessment is difficult and all the things that you can think about. But I never really pursued research in the elderly, per se, as a research interest and didnt really have the collaborators to do that. The neuropathic pain piece was something that, as a neurologist, Id really been interested in. One of the areas that resonated very nicely with my other interests was in looking at opioid responsiveness in neuropathic pain and have done some studies of that. Im actually proud of that observation. I have to tell you that that observation, which also began as a paper that was essentially a survey of prior experience, was a very important observation at the time that we did it, because we were living in a time, I guess, toward the latter part of the eighties or the early part of the nineties when a number of papers were being published that were suggesting that neuropathic pain was resistant to opioids. MELDRUM: I have heard that even since. PORTENOY: The implication of that, obviously, is you dont try something when you know it isnt going to work. So people with shingles, people with diabetic pain, polyneuropathy, patients with post-stroke pain, according to the implication of that research, should not be given an option to try opioids because all youre going to do is produce negative effects, side effects with no analgesia. In the cancer population, Kathy Foley and Chuck Inturissi and myself had this continuing experience of finding patients with bad neuropathic pain who got better when we gave them opioids. It was such a stark contrast to what was being published. On the basis of that, we had some meetings and brainstormed the issue, and we decided that we would write up a series of infusion experiments and show that patients with neuropathic pain could respond to opioids when the doses were titrated in a very aggressive way. That led to creating a concept, if you will, a concept of opioid responsiveness, which basically validated other peoples observations, saying yes, weve all seen patients who you can give them any opioid you want in any dose and all they do is get sleepy, and they never tell you they feel a bit better. They exist, those people. On the other hand, we see people with bad neuropathic pain who take a codeine tablet and say thank you. That heterogeneity in the population is there, so the implication is that there is an opioid responsiveness that varies. It may vary from patient to patient, it may vary from disease to disease, and it may vary from drug to drug in the same patient. That paradigm, which was very conceptual at the time that I put that together, there really wasnt and really still isnt any evidence (chuckles) -- a recurring theme in this interview -- there really isnt any evidence. But it resonates very nicely with experience, so a series of papers were done afterwards about opioid responsiveness and how to manage it. Im actually very pleased that that got out. Id like to believe what happened was that the concept of opioid resistance got debunked, and that even those people who were trying to make the point that opioid resistance occurs began to say okay, well, maybe not everybody. Then as soon as they said that, then they couldnt say resistant anymore, unless you were talking about the individual. But you cant talk about a population and say resistant. I think you said that people are still talking about it. I dont think Ive seen much labeling of whole populations anymore. I dont think that thats as common as it was, and Im pleased about that. So that was that other piece of the postherpetic neuralgia, starting with that, getting interested in neuropathic pain and then figuring out what one can do about it. MELDRUM: That brings up two questions. First off, and this is about the way in which patients vary in their response to opioids and, indeed, to many kinds of therapy. At one point you suggested a genetic component, and Im wondering if you can hypothesize whether this is a difference in metabolism, in physiology, or if theres also -- and this may not, of course, be genetic -- a psychological component based on expectations or past experience. Thats one question. Then the second question is, given that we have this individual variability, is it really possible ever to construct any kind of rigorous evidence? I mean, you can do a huge trial and say okay, this is our experience in these three thousand patients; but theres always a three thousand and first patient whos going to be different from the others. PORTENOY: Those are two great questions. The first question is the easy question because the answer is both. Theres no question that expectation, conditioned responses, fears about side effects influence the way patients respond. We know, for example, that even the phenomenon of tolerance can be demonstrated to have both a physiologic substrate with changes that are happening at a pharmacodynamic level, and we also know that conditioned responses can cause the effect of the drug to win over time, whats called associative tolerance. Theres no question that its both. That really leads to the second question, which is, does it make sense to think that we could ever acquire enough evidence about drug effect so that you can actually target therapies? The answer there is that the goal is to reduce the noise. Its always just to reduce the noise, but I dont think well ever get to the point where youre talking about a degree of specificity like penicillin for strep. And I think thats very important. I had a patient, for example, yesterday in my clinic who is a seventy-two-year-old man with very severe medical problems whos developed a painful polyneuropathy. Hes desperate to maintain a good quality of life, but hes having trouble walking. He and his wife of fifty-six years related to me that most of their life is walking. Thats how they described it, most of their life is walking. They walk everywhere together, and they walk every night just for pleasure. Now he cant walk, and hes devastated by this pain syndrome. Hes had it progressive over a couple years. This is the first time hes seeing a pain specialist. I told him that the good news was that there are, among pharmacologic and nonpharmacologic therapies, probably a hundred things to try. And the bad news is that I have no idea how to prioritize those hundred things. I thought that it would be reasonable to just go from a group of approaches that were essentially a multimodality strategy that emphasized the safest approaches, but I had no idea what he would respond to. If you say to me that a study in three thousand patients, soon to be done, would allow me to narrow this down so that I could tell, based on the fact that he had no allodynia and his pain was burning in quality, so he had a continuous dysesthesia without allodynia, and now I could tell based on that phenomenology that the mechanism driving the pain, at least in part, involved calcium channels, so he had more of a chance to respond to a calcium channel blocker than to a sodium channel blocker so that I could go from a hundred possibilities down to twenty-five and increase the likelihood maybe 50 percent, that would be good for him. I think thats a legitimate hope. Its even possible, as you probably know, this whole field of pharmacogenomics, which is so incredible, it may be possible that youll go to a doctors office, and youll go there because you have shoulder pain or tennis elbow or something like that, and Ill scrape the inside of your mouth, send it to the lab, and find out that you will respond to ibuprofen but you wont respond to ketorolac. (chuckles) I said, Okay. How about a little ibuprofen? That might do better for your tennis elbow. These things, I think, are coming, and I think they would be very helpful. But one thing about pain is that as an inherent subjected phenomenon so linked with what makes everybody human, there is just no way ever to think that one is going to get at that phenomenology through an approach that targets a specific therapy with a high likelihood of response. Its just very unlikely. MELDRUM: Okay. Good answers. You finished your fellowship at Sloan-Kettering. Were you sort of expected to go back to Einstein? That was the deal? PORTENOY: Yes. MELDRUM: And you were at Einstein for three years after that, I think, in neurology? PORTENOY: Yeah. I finished my fellowship in 1985, and I returned to Sloan-Kettering in 1987. MELDRUM: So you were away for about two years. The time at Einstein, you were working on the pain service there still with Dr. Kanner? PORTENOY: Yes. MELDRUM: Any particular -- was it just trying the new pain service, trying to get lots of patients in? Did you get a chance to do analgesic studies at all? PORTENOY: We did a few trials but very, very limited. I learned a lot about academic medicine from that experience. Going back to Albert Einstein, the Department of Neurology and the institution were willing to invest in having a pain program. What that basically meant was that the chairman was able to hire us, and there was enough space so that we could have an office. They wanted the pain service to be at both sites that the hospital had, so Ron Kanner was at the site at Montefiore Hospital, and I was at the site of the Albert Einstein College of Medicine office. Of course, we only had one secretary, so that one secretary didnt sit with me. (chuckles) That secretary sat with Dr. Kanner. So my career at Einstein actually started out with me in a little office in the way, I think, on the ninth floor -- or maybe the seventh floor -- of the Albert Einstein College Hospital, with nothing but a desk, a phone, and an answering machine. Thats how I started out as an assistant professor there. I learned several things. One is that, in the absence of an infrastructure, a person even driven to do research, who loved doing research and was very intent on an academic career, would have a tremendously difficult time moving forward. The other thing I realized was that the treatment of chronic pain patients, because of the high prevalence of psychiatric co-morbidity in that population, a clinician who wanted to be more academic -- and I really, honestly believe also the full-time clinicians -- have to have a structure that buffers them from the patients needs. You want to be able to have a presence, you want to be able to address the need, but at the same time, you dont want to be on the other end of an answering machine. I remember, for example, very vivid memories of going to lunch and then coming back to my little office and finding twelve or eighteen messages from pain patients who needed prescriptions refilled or who were crashing psychologically or who were asking for emergency appointments, and I had no way of dealing with the patients other than to simply call them back. Then those patients -- and it obviously wasnt all patients, and it was probably a minority -- but those patients with psychiatric co-morbidity, once they had the doctor on the phone, made it very hard to do any work. I spent that two years at Einstein really committed to move forward at Einstein in an academic context. I, in fact, wrote a grant, did a couple of little studies, tried to build that clinical practice; but in the absence of an infrastructure, it was _____ and it was hard. What I learned is that -- and, parenthetically, what Ive tried to bring to this department twenty years later when I was given an investment and was told, okay, what do you want to build? This is the Gods honest truth. I was able to look back there, and I said, Okay. Were going to build a structure so that the doctors have access to an academic infrastructure so that we can do research or we can do educational programming, and there will be time in the day, and there will be people to do some of the hands-on work and to provide some of the creative spark. And everybody needs a secretary. (laughs) These are the kinds of things that had I not had that experience back there, I probably wouldnt feel so strongly about. Even though I really liked very much working with Ron Kanner and still have a very good relationship with that department -- theres still the same chairman there, and were still very close, and its a very collaborative kind of relationship -- bottom line is that when I was offered a job back at Sloan-Kettering, even though it was almost no salary, it was a foregone conclusion that I would say yes. MELDRUM: So you hurried back. PORTENOY: Hurried back. Kathy Foley was saying, Were going to try to get you back here. She said that numerous times, but there was no money. Then, as I said, there was still almost no money, but the chairman finally agreed that he would try to get a salary line for me, and I grabbed at it. Because, again, I knew that for someone like me to be able to go back to Sloan-Kettering where there was an infrastructure would spell the difference between being able to pursue all the things that I really wanted to pursue, and not. MELDRUM: And get some research done as well. PORTENOY: Absolutely. MELDRUM: It does, it makes a tremendous difference. So you became Director of Analgesic Studies. PORTENOY: Which was a title with absolutely no authority. No authority, no obligations, but it was just a title. (chuckles) But now, again, I learned from that, too, when I had a chance to set up this department. I had to make sure everybody had a title. (chuckles) I have a whole list I keep in the closet, and if I hire somebody new, they get a title. It doesnt mean they _____ obligation. MELDRUM: Were there any particular interests that you came with? You said you wrote a grant at Einstein. Did you take that back with you? And the grant was specifically to do what? Do you remember? PORTENOY: Oh, my gosh. I think that the grant was to study pain in the elderly, and when I went back to Memorial, I didnt take it, again because that population didnt lend itself to that. I guess that is an irony, in a way. Had I stayed at Einstein, there was a huge program on neurological dysfunction in the elderly, and also in dementia. I had identified really wonderful people to work with at Einstein. There were wonderful scientists there. So the irony is, had I not gone back to Sloan-Kettering, I probably would have been driven to do this research and driven to work in this one population where there was collaborators. But it didnt work out that way. END OF TAPE RUSSELL K. PORTENOY INTERVIEW TAPE TWO, SIDE ONE MARCIA MELDRUM: Were starting the second tape in our interview with Dr. Portenoy after having some calamity happen to the first tape. Ive forgotten where we were. Oh, you were working with an entirely different population at Sloan-Kettering, mostly cancer patients. RUSSELL PORTENOY: Right. MELDRUM: Fairly early on you developed something called the Memorial Symptom Assessment Scale. Do you want to talk about that? PORTENOY: Sure. MELDRUM: Which included not only pain but, presumably, other factors as well. PORTENOY: Right. The evolution of the group at Memorial from a perspective of perceiving ourselves as pain specialists and perceiving ourselves as palliative care specialists is actually an interesting phenomenon. Kathy Foley was involved internationally with a number of people who participated with the WHO project and began to talk about cancer pain as just one aspect of a broader approach called palliative care. One of the more influential people talking at that talk was Vittorio Ventafridda, who made the point repeatedly that he, as an anesthesiologist, started out thinking that the way to solve most of these patients problems was by doing injections. Then he realized that he could solve most of these patients problems by giving them analgesic drugs. Then he realized that most of these patients problems werent pain. (laughs) He very eloquently talked about the fundamental need for palliative care, which was quite interesting because his background was so pain related. Thats pretty much what happened to us, also, at Sloan-Kettering. Kathy and I, toward the latter part of the eighties and in the early part of the nineties, began to talk a lot more about palliative care, what palliative care was, what sort of expertise a physician has to have in order to do palliative care. One of the key aspects of that expertise is an ability to control symptoms other than pain. So I became interested in doing surveys of patients in terms of their symptoms, pain plus others. Again, from my research perspective, Ive done many surveys of pain and other symptoms, but if you look at the earliest things I did, they were very pain focused. I did a survey of pain in patients with lung and colon cancer. Then I did a survey of patients with pain related to ovarian cancer. And then we did some work looking at pain related to spinal cord compression. It was very pain focused in the early years. Then as the thinking evolved to recognize cancer pain as one piece of the bigger picture, then my interest from the research perspective evolved to thinking of looking at pain as one symptom and then looking at symptom distress as one factor in quality of life. Those were the trends. That all led, in the early 1990s, to brainstorming sessions with some really wonderful people I had the pleasure to work with, including Nessa Coyle, whos still at Memorial, and Alice Kornblith, who is a psychologist, now with Dana Farber. The goal of that was to think about how to assess symptom. We did a literature search, and we found out that there were some symptom distress scales, but we honestly thought that the published and validated symptom assessment scales were deficient in one way or another, so we decided to create our own. It was the first time that I ever did instrument development and learned a tremendous amount through the process and ultimately created a list of symptoms, did a study that was funded by the American Cancer Society to evaluate the scale, and came up with very nice looking validation data. Its been really one of my real pleasures in life to see how people have taken up the scale and have started to use it in a variety of studies. I mean, there are now a whole series of papers that have come out. I myself have been involved with validating two MSASes for children -- the Memorial Symptom Assessment Scale for Children -- with John Collins, who is a pediatric palliative care specialist in Australia. Victor Chang, who is my former fellow, has validated the short form of the MSAS and a condensed version of the MSAS -- the paper is now in press -- and a very good journal looking at the condensed version of the MSAS. The MSAS has been expanded to be used in populations other than those with cancer. A recent study was done to actually evaluate the use of the MSAS in family caregivers to look at the distress of the caregivers. I dont think it was rocket science, but I think what it was was rigorous. We said we needed to assess symptoms, so we needed to get a list of symptoms that was long enough so that wed get all the big players but not so long that people couldnt complete it. The other insight was -- and this came entirely from pain -- was that we realized that symptoms are multidimensional and that asking people just about intensity wasnt enough. So we created an instrument that asked about intensity, frequency, and distress. Thats the long form. And I think that was the innovation that hadnt been done before, and it bore fruit in the sense of developing a tool that could then be used in order to do needs assessment and to look at intervention. Parenthetically, as you know, every time the MSAS is given to a population of patients, what you find is incredible unmet needs for symptom control. People are multisymptomatic, whether youre talking about patients with heart disease or lung disease. These are patients that we just completed our study in the elderly, highly symptomatic. Whether youre talking about patients with cancer or with AIDS, another group that we studied when I was at Memorial looking at symptoms of stress, incredibly symptomatic. So, to have a tool that makes a phenomenon visible gives people the power to say okay, its there. You cant deny it. Now what are we going to do about it? And that was the goal. MELDRUM: Would you say that previous to this introduction of these ideas by Ventafridda and by Sloan-Kettering there was an assumption that patients would really tough their way through the symptoms, or that they were not really significant, or what? That it was just something they had to put up with? (chuckles) PORTENOY: Well, I think that probably the better way of thinking about it was that treating symptoms and other elements related to quality of life was not the primary goal of medical care. I dont think that compassionate health care providers of any type would look at somebody suffering with uncontrolled shortness of breath and say tough it out. Thats not what its about. People are compassionate and health care providers do want to help. The question is whether or not theres suddenly a group of people or a service or a system the responsibility of which is to say quality of life is important, were going to focus on that. Thats what palliative cares done. I think that its very parallel to the pain field. I never had a chance to talk to John Bonica about the actual factors that drove the development of the program at Washington. I had the pleasure of meeting him a couple times, which was great, but what I heard secondhand -- and you may know more -- is that he was just struck with the fact that he couldnt help these people. Working in isolation, having the set of tools that he had, he couldnt help these people, so the insight was, if we create a system focused on this problem, this improving your quality of life by addressing your pain, and were going to give it priority, then it might be better. I think that was the insight that Ventafridda and many others -- at the international level there was this core group, I guess, of fifty people, and it slowly enlarged until the present. This is not a done deal, internationally. But its the recognition that people living through illness, or, from another perspective, people with chronic pain, some of them need access to an individual methodology or a system that says your quality of life, or your comfort, is the priority, and were going to figure out how to work and provide specialist-level care for that. I talk about that all the time -- parenthetically. I talk about the fact that what were trying to do in this department, and what Im trying to do, is to identify the nature, the parameters, of specialist-level care in pain management palliative care. If you think about it, in the developed world, this resonates with what health care is. We want every physician and every nurse to know how to treat pain; but, obviously, the average physician or the average specialist in some other area, is not going to have the skill set necessary to treat all the patients. So if you have a cadre of pain specialists or a cadre of palliative care specialists, and then you identify by increasing the visibility of the problem and by giving people a skill set to treat some of the problems, they can identify those problems they cant manage and refer appropriately. Weve got such a long way to go, in part because pain management and palliative care are both marginalized in the health care system, so as marginalized fields, we dont yet have the frontline people prioritizing the things that we do: doing the assessment, applying a skill set, and then saying this is beyond my knowledge. Refer them on. MELDRUM: Youre involved in something called the Tool Kit project? PORTENOY: I have been. MELDRUM: I didnt know what that was. PORTENOY: Thats a project that Joan Teno at Brown University, which is basically to develop methods for assessing palliative care needs and outcomes. Im also involved with something thats still ongoing, which is called the National Consensus Project on Norms of Practice in Palliative Care. Were creating a consensus document to which, we hope, all the major players in the United States will sign onto, basically saying this is what palliative care is, specialist-level palliative care. This is who should get it. These are the systems you need. And try to move that forward, that concept that there is a specialist-level pain management palliative care approach thats appropriate for some people. We have to train everybody else doing health care below that level so that you can get the best care you can possibly get from your primary care provider, but that doc has to know what he doesnt know. I think, just to answer your question in this very long and roundabout way, one of the big problems, in my belief, is not that health care providers see people suffering and say tough it out, but they see people suffering and they dont know that theres more to do. As an extreme example, if youre a primary care doctor and you dont know that technologies like spinal cord stimulation or neuroaxial infusion work -- I mean are available, let alone work -- would you ever refer for an evaluation for that? You couldnt, because you dont know. The whole structural approach to health care where primary care has access to specialist-level care, and the skill set of the primary care doc enlarges but theres always access to the specialist level, that only makes sense if theres enough communication so the primary care person knows whats available. Unfortunately, with areas like pain management and palliative care, which have really be so outside the mainstream, I dont think that thats there yet. MELDRUM: No. I know it isnt there yet. Its very apparent, I think. PORTENOY: I hear that all the time. I do my office hours on Wednesday. I had two patients yesterday, one Ive been treating for a while and a new patient, and the patient Ive been treating for a while has very, very severe cluster headaches, very severe cluster headaches. He spent eight years totally disabled in severe pain. Multiple emergency room visits, multiple hospitalizations. He was then referred to me, and I gave him an opioid and I pushed the dose up, and he became pain free. Hes been pain free now for two years. It was like he lived through hell and now is back. He and his wife come in and try to articulate this experientially, articulate what its like to be holding your head and screaming and running to the emergency room several times a week for eight years and then suddenly be totally pain free. He hasnt had a headache in two years. One of the emotions that he cant suppress is anger. He keeps on talking about his prior neurologist, who, actually, is a headache specialist and knows a lot but doesnt know opioids and didnt know that opioids could be used. I know this person, a wonderful person who in no way wanted this man to suffer, and in no way said he should tough it out. He just had a set of tools that was limited and didnt know that he could refer for the others. I think that thats a very real phenomenon out there. MELDRUM: It is sad. Okay. Shall we stop now and continue tomorrow? PORTENOY: Yes. MELDRUM: Okay. Were concluding this first session. Its about one oclock. END OF SESSION 1 (17 APRIL 2003) START OF SESSION 2 (18 APRIL 2003) MARCIA MELDRUM: Good morning again. Its about 11:00 a.m. on the eighteenth, and were resuming this interview with Dr. Portenoy. One other thing that you did when you were at Sloan-Kettering was trials with the MSContin when it was first coming out, the continuous release morphine. Could you talk a little bit about that? I know in one of the studies it seemed to improve patient compliance with dosage, and I thought that was rather interesting. RUSSELL PORTENOY: That actually was one of the studies that I did before I got to Sloan-Kettering. That was a study performed at the Albert Einstein College of Medicine. It was a controlled clinical trial comparing the long-acting morphine to four doses, if I remember correctly, of the short-acting morphine. It was done double blind, so patients didnt know what they were getting. Interestingly the patients who got the long-acting morphine had better pain control, slightly, and when one asked the question why that was, the fact was that they actually took more drug, which just was confirmation of what every clinician knows is that most people, when you tell them to take a medicine four times a day, dont do it. They miss a dose. And with pain medicine, it gradually accumulates and they end up taking less over time. That was an interesting experience. That was when the long-acting oral opioid medications first came out, so it gave me some experience with that and really made me a believer that thats the right way to treat chronic pain, with a long-acting drug administered around the clock. MELDRUM: In terms of methods of administration, we have a lot of new tools. We have PCA and transdermal patches and various other things. Do different ones work well for different patients? Or are there specific ways of choosing which route you want to use? PORTENOY: For many years those of us who were involved in cancer pain were advocating that the best way to treat is by the mouth, the oral route. In a way, I think the strong statements about that were a reaction against what had been conventional practice years before of treating patients with chronic pain using multiple injections, which were uncomfortable. In the hospice practices that grew up in Europe, particularly in the UK, it was discovered all of a sudden that if you gave patients oral morphine and you gave it on a regular basis and you just gave it at a higher dose to adjust for the poor bioavailability of the drug, you actually had perfectly adequate pain relief. We all, meaning my colleagues who I worked with and many other people in the United States, became strong advocates in chronic pain for using the oral route. When the transdermal route came around with fentanyl, I was a little -- Im chagrined now to say that I actually predicted it would be a very tiny drug, a very limited role. I didnt even know if it was going to survive. I said, Well, sure its a useful drug for people who cant swallow or have some sort of GI problem, but who else would want to use it? Well, much to my shock, when the drug got on the market and began to be used, there was and is a subgroup of patients who, number one, may do better with fentanyl than with other drugs, but equally important, number two, find that not taking another pill is a quality of life advantage. So I think the answer to your question is that having access to multiple routes can be very important, sometimes to address a medical issue, like a differential response to one opioid or another; the need for rapid onset breakthrough pain medication, which you get better with a parenteral drug than any other route, that kind of thing; and also is valuable because people respond differently psychologically to different routes. So it allows one to try to optimize the quality of life advantage during treatment. MELDRUM: I know that youve also had a consistent interest in breakthrough pain. Maybe you could explain a little bit what that is. It may not be self evident. I think its a real problem in a lot of different conditions. PORTENOY: Im actually happy with that direction of research that we did. People have been talking about breakthrough pain for years. This was, I guess, in the mid-1990s, and they had been talking about breakthrough pain for years. In fact, it had become common to use a short-acting medication in association with a longer acting medication to address episodic severe pains that would pop up in patients who had otherwise well-controlled baseline pain. In the cancer population, these sudden onset pains were often related to movement. The person with a bone lesion would stand up and feel back pain or leg pain. Sometimes they were related to neuropathic lesions so that patients would get a sudden jab of pain which was a subtype of their neuropathic pain. Sometimes it would be related to a treatment. For example, a patient who had mucositis after radiation would get terrible pain only when he or she started eating. So there was a common experience that patients would have trouble with episodic pains, even if the pain they were talking about having most of the time, or all of the time, was controlled. The terminology breakthrough pain was in the literature, and strategies for treating breakthrough pain were in the literature, but in the mid-1990s, there was absolutely not a shred of evidence or science or epidemiologic observations to help people understand how prevalent this problem was, what the variation is in the clinical population, and how one might treat it. A colleague of mine, who was actually a fellow at that time, Neil Hagen, and myself began to talk about this issue and brainstorm how we might actually look at it. We said, well, its a very difficult assessment problem from a measurement perspective because how do you measure something thats different in every person? Ultimately, what we decided to do was to structure an interview in which one question would lead to another question if answered affirmatively, or it would lead to another question if answered negatively. So we created almost an algorithm for questioning patients, which, if a patient answered affirmatively to the question, do you have pain more than half the day or take an opioid most of every day, and then they answered affirmatively, is your pain generally controlled, what we mean by that is X, and then they answered affirmatively to the question, when your pain is controlled, do you experience episodes of pain that are poorly controlled, and a series of questions like that but very structured, very meticulously drawn, we actually were able to discover that people observing their own experience were able to say yes, I have breakthrough pain, it occurs this number of times a day, this is what brings it on, this is what it feels like, and this is what I do to treat it. We were able to actually obtain data on the phenomenology of breakthrough pain and published a small paper in the Journal of Pain that just began to describe it. It was very gratifying to me to see that others have used that questionnaire and have been able to do the same thing we did. Essentially, we were able to publish three papers. Ive been involved with three publications on breakthrough pain, in each case asking patients to identify their own phenomenology and, in those patients who have breakthrough pain, determining what the cause is and what the characteristics are. Then, how that was followed up -- I think this is a nice illustration of how one reasonable idea begets another. The individuals in a small pharmaceutical company in Utah who had been experimenting with oral fentanyl and trying to administer oral fentanyl in a lozenge that would be dissolved in the mouth so that the oral fentanyl would go through the buckle mucosa saw that they would be able to treat rapid onset pains by that route and came to me and said, Lets talk about the possibility that this oral transmucosal fentanyl could be used as a medicine for breakthrough pain. Well, we had the methodology to identify how common breakthrough pain is, and we saw what the duration was and how frequently it was occurring during the day, and suddenly it became very feasible to investigate breakthrough pain as a type of pain that might be addressed pharmacologically. What that all led to after many meetings and advisory groups and protocol development by the company and FDA involvement was a series of protocols that used a completely unique and innovative methodology in which patients with well-controlled cancer pain would go home and actually assess their breakthrough pains, whenever they occurred, using a study drug or a placebo. So they would wait at home until a breakthrough pain occurred, and when a breakthrough pain occurred, they would take the medicine. But before they took the medicine, they would measure their own pain, and then they would use a stopwatch to measure it again at five minutes and at ten minutes and at fifteen minutes, write down the data, and then provide the data back to the investigator. That methodology worked as well as you could possibly imagine. It allowed a series of studies to be done that established the safety and efficacy of oral transmucosal fentanyl citrate, and now that formulation is on the market and has been successful. MELDRUM: I remember one of the things that Ray Hood told me was that he had tried to have patients do pain diaries way back when he was first starting, and he found it was very difficult to get them to do it with any consistency or reliability, so he stopped having them do that. What youre essentially talking about here is having patients really provide fairly systematic, carefully measured data. Evidently, youve had success with that. Do you think that we now have more sophisticated cancer patients, or what do you think? PORTENOY: I think that the key thing in the methodology has probably been the more intense involvement of research coordinators or research nurses, who call the patient and try to get the patient collaborating in what the methodology is. Ive been involved with studies that have incorporated a nightly diary for months at a time, and the completion rate has been extraordinarily high. What weve tried to do, basically, is to link the assessment time to something the patient would be doing anyway, like waking up in the morning or going to sleep at night. Make the diary quite easy to do, limit the time involved, and then have the nurse call up and say did you do the diary, did you do the diary, did you do the diary. And the completion rates have been very good. I think what the studies of breakthrough pain using the oral transmucosal fentanyl citrate showed -- that methodology showed that if you select patients for the study appropriately who are good observers and are basically compliant and understand the goals of the study, you can do things flexibly with a type of pain that you cant possibly study in a more structured setting. If you take those patients and you sit them in a chair and wait until their breakthrough pains come, they never come. MELDRUM: Right. Theyll be perfectly happy. Okay. We talked a little bit yesterday about symptom control. Certainly, one of the symptoms which it seems to me is only really now getting attention is fatigue. I would say it seems to be as prevalent as pain and perhaps almost as disabling and discomforting for many people. Can you talk a little bit about why it took such a long time to recognize fatigue and about what some of the strategies are for dealing with it? PORTENOY: Yes. I think cancer-related fatigue has really become a much hotter topic in the last five years than it was before, even though its been a huge problem ever since chemotherapy got on the market. I think probably one of the driving forces for that was a partnership that evolved between a corporation, Ortho Biotech, and a group of academic professionals. That collaboration, which was created by Ortho Biotech and funded by Ortho Biotech, was called the Fatigue Coalition. MELDRUM: Wasnt that because they already had this medication in their plan? PORTENOY: Thats right. Obviously, whenever corporate America engenders these collaborations with academic types, theres always a little piece of marketing interest. Thats the reality of what we do. I think, from my perspective in really doing dozens of these kinds of partnerships with all different companies, the important thing is to work hard to maintain a firewall to let them know that our involvement, my involvement, is not product related, its not promotional. Its either educational or to create some sort of deliverable. By and large, my experience with these partnerships has been extremely positive. Some of the best things that have happened educationally in the world of cancer pain, cancer-related fatigue, palliative care, now in 2002-2003 the area of neuropathic pain, is happening because the pharmaceutical industry has developed a self interest that causes them to create and fund these partnerships. Having said that, I guess about six years ago, or so, I was approached by a medical director at Ortho Biotech and asked if I would chair this new entity called the Fatigue Coalition. Once I found out about it, it sounded really potentially fantastic. On that Fatigue Coalition were a group of luminaries in medical oncology, psychology or psycho-oncology, and palliative care. We met three times a year, just about, and created programs and research that was then implemented over the course of the time between the meetings. We created a national survey of fatigue in cancer patients and then replicated it and published two very good papers on the epidemiology of cancer-related fatigue. We developed a review on management strategies that incorporated an algorithmic approach for the treatment of cancer-related fatigue, which is the first time that that guideline had ever been developed. We created educational materials that were presented at the American Society of Clinical Oncology meeting and at the American Society of Hematology meeting. A whole series of things were done under the auspices of the Fatigue Coalition that had essentially three goals. One goal was to collect data, the second goal was to educate professionals, and the third goal was to raise consciousness about the problem. At the same time, of course, the Oncology Nursing Society elevated fatigue to a central interest. Some of the best research has been done by the nurses and published in the nursing literature, for years and years. This new money coming in on the physicians side complemented what the nurses were doing already. I think whats happened in the last six years, as you pointed out, is that all of a sudden people are recognizing that this is an extraordinary prevalent problem, very heterogeneous, can be disabling, can prevent people from going forward with their primary therapy for cancer, and in many cases, its treatable. Its treatable in part by trying to reverse the causes, which is the drug that the company who created the Fatigue Coalition was interested in. But its also treatable by using other kinds of medications, like stimulants; and its treatable using exercise and cognitive approaches, like pacing and guided imagery. The bottom line is to put it on the radar screen and then get people to begin to deal with it clinically. Of interest, if you think about it, where we are in the area of cancer-related fatigue is like where we are in the area of cancer pain about twenty-five years ago, with recognition its a huge problem, research is limited, treatments are being implied empirically, guidelines are being developed in the absence of evidence, and now theres new interest in doing research. MELDRUM: Its very nascent at the moment. PORTENOY: It is. MELDRUM: But I think that the interest thats grown up around it has been -- obviously, patients and their families have latched onto it immediately and said yes, weve been telling you this for years. I hear a lot of interest as well from health care professionals. Its something that would definitely make quality of life better. PORTENOY: Also, I think that theres a suspicion, which hasnt been confirmed, to my knowledge, but theres a suspicion that fatigue accounts for so many lost dollars in terms of productivity and also unnecessary hospitalizations, that aggressive treatment of fatigue is going to be cost-neutral, or it may be up to the health care system. Its the same thing people talk about in chronic pain all the time. Treating chronic pain is not a cheap endeavor. Somebodys got to pay for it. But from a social perspective, its almost definitely much more cost effective to treat it than to not treat it. MELDRUM: It still seems very hard to get that message across. PORTENOY: It is, because the people who are needing to pay for it are not gaining the direct benefit. Thats always the problem. You talk to an insurance carrier about the benefit that the health care system as a whole is going to realize, and they say, so? MELDRUM: No payoff there for us. Okay. Lets talk a little bit about organizational activities. You were involved with the Eastern Pain Association and also you went to an APS meeting fairly early on. Can you talk a little bit about getting involved with these organizations and how you saw them when you first got into them? PORTENOY: Yes. I became involved with the Eastern Pain Association and the American Pain Society about the same time, in the early 1980s. The Eastern Pain Association had a very limited program. It had a program of five or six -- maybe fewer than that now that Im thinking about it -- lectures in the evening. Of course, the American Pain Society had its annual meeting. I began to go to these meetings and connect up with other people who had my interest. The bottom line is that the quality of all these meetings was not great, but the opportunity to network with other people who were interested in this kind of problem was unbelievable, particularly since nobody else was. You could walk many miles before you found another pain specialist, but if you went to the American Pain Society meetings, they were right down the hallway. I really liked that. In the Eastern Pain Association, there just werent that many people, so just the willingness to volunteer for a leadership position got you a leadership position. So I became secretary and then I became president, and that happened very quickly. It didnt really involve a whole lot of obligations, but thats just the way it was. In the American Pain Society, I dont really know how I was tapped, if thats the best word to use, for doing things on committees. I dont remember that I really reached out to people and said Im willing to volunteer more time, but I was asked. My guess is that it was through Kathy Foleys involvement because she was president at that time, I think. In any case, I began doing some committee work and took it all very seriously. I was asked, for example, to draft a statement about the ethics of pain research, and I reviewed the international documents that pertained to that. Then I drafted a document that I thought incorporated the international guidelines but made it more relevant for the APS, and that was passed by the board. Again, Im not sure that it had any influence, but the fact that the board had a document was important and a milestone in the development of the organization. It also, I think, made everybody aware that I took all of this very, very seriously, and if you gave me a job to do, Id find the time to do it. That led, I think pretty rapidly, to the opportunity to sit on the board of directors, which I had never done before. It was great fun. (chuckles) Hour after hour after hour after hour discussing the same thing over and over and over again was always enjoyable. Got involved with some really wonderful people. Then ultimately was elected to higher office in the American Pain Society, and I think I was president about four or five years ago. I have a real soft spot in my heart for the American Pain Society. I think that as a professional society, it started really with an idea of what a professional society should offer for a discipline that was growing and wasnt really evidence-based, and crossed so many different specialties, and also crossed the basic sciences, as well as the clinical sciences. It was really a dream based on a vision. Somehow or another, through generation after generation of people on the board of directors, that evolved into an organization that really has done a few very wonderful things. The annual meeting is a wonderful thing. The journal is a wonderful thing. Some of the deliverables that the organization has created, like the Clinical Practice Guidelines, the Analgesic Guide, tens of thousands of which have been distributed around the country. These are really good things. Im proud of that. Im proud of the organization. Im really happy that I got involved in it. At the same time, I was getting involved with the and now am secretary of that organization, my second term as secretary, which again is not a job that involves a whole lot, but dont tell anybody. I do get to sit in on the executive committee pulse and be involved in decision making. I think thats another organization that is a wonderful organization primarily because of that extraordinary meeting every three years. Amazing meeting. And also, its harder to create deliverables when youre talking about so many different countries, cultures, the financial situation across all these countries. The things that are being done by the organization aside from the meeting typically happen in fits and spurts. Despite that, I still think its a great organization, so Im going to stick with that one as well. MELDRUM: It is kind of amazing how much theyve manage to accomplish with such a diverse base. PORTENOY: It is. Many of the countries that are active in the ISP have really currency restrictions and limited income, and the doctors make almost no money. To travel or to purchase a journal or to do anything is impossible for them. So its really quite wonderful. MELDRUM: And the organization is very conscious of that. Im not that deeply involved with any other international organizations, but the work that the head office does in trying to get books and other things out to some of the less advantaged countries is kind of amazing. Okay. Lets talk then -- you were at Sloan-Kettering until 1997, so could you talk a little bit about how you decided to make this move to come here to Beth Israel? PORTENOY: Sure. During the period of time in the mid-90s and going into 1996 and 1997, Kathy Foley and myself, at that time we were co-chiefs of the Pain and Palliative Care Service, and this issue of creating a palliative care program into which would fold cancer pain work really became very important to us. We talked about it all the time. The development of this kind of programming at Sloan-Kettering has been and will remain difficult because of the fundamental mission of the place. It took Kathy and myself several years to get permission -- if you can believe it -- just to get permission to change the name of our program from the Pain Service to the Pain and Palliative Care Service. Whenever we wanted to do any kind of program work, the need for approvals up the line would stymie us. And even the research, ironically enough, everybody knew that it was actually a lot -- sometimes, in some cases and for many years, and I dont know if its this way now, but as a reality for the time I was there, it was harder to do a survey study of quality of life or symptom distress than it was to do a _____ clinical trial where there was a possibility of mortality from exposure to the drug. MELDRUM: Sure. Because all the impetus is behind the clinical trial. PORTENOY: Thats right, and the people reviewing the protocols did not feel that any burden on the patient to assess quality of life or symptoms was worthwhile because it wouldnt yield a direct benefit, as chemotherapy would. So the need for education on the part of the community at Sloan-Kettering was enormous because we essentially had to infiltrate the idea that pain management and palliative care was pretty important to patients and that it needed a scientific base just like everything else. Anyway, it was a big struggle. But I was committed to stay at Sloan and to continue to try to work there. Of course, the people on our team, Kathys and my team, are such truly extraordinary, wonderful people. Even though I struggled with the institution a bit, I never felt anything but just support and love within the team. Having said all that, an extraordinary series of events happened in 1996 and 1997 that led to me finally making the decision to leave. Essentially, what happened was that the leadership of Beth Israel Medical Center wrote a grant proposal to United Hospital Fund to get some money to do a palliative care education program for residents. Beth Israel has been a place where respect for palliative care and end-of-life care has been very notable among hospitals in New York. For example, this was an institution which was the first institution to have professionals take their gloves and gowns off to take care of AIDS patients. This was an institution that made all the newspapers because it agreed to accept a patient whose family wanted to disconnect from the respirator in a manner consistent with the patients wishes, but the patient was at a hospital, and the hospital refused to do it. This was an institution where the CEO at the time, Robert Newman, agreed to let a New York Times reporter do an analysis of a series of patients who died while in the hospital in order to evaluate end-of-life care in a major metropolitan hospital, and that became a front page series in the New York Times. When I read that series, parenthetically, which I think was in 1995 or something, I actually remember talking to my wife about that and saying, What kind of hospital allows a reporter to look at people who died, because dying is considered the failures? Right? I said, Ill bet you could do palliative care at that place. I actually remember saying that. Ill bet you could do palliative care at that place. In any case, in 1996 or early 97, I was contacted by the physician-in-chief here, and I was told that they had a grant to educate residents, and they asked me if I would consult on that grant. END OF TAPE RUSSELL K. PORTENOY INTERVIEW TAPE 2, SIDE TWO RUSSELL PORTENOY: I was asked if I would be willing to come to Beth Israel and consult on the grant. I agreed, and I met the executive VP and the physician-in-chief for a meeting, during which time they put the grant in front of me, they said, This is the grant. What do you think about educational programming for our residents? I spoke for a while about things that I had been thinking about for quite a while, and in a moment of high drama, the executive VP took the proposal and pushed it aside, and he said to me, What if you were just to set up a clinical program at a hospital like this? How would you set it up? Now, ironically, about two years earlier, I had written a proposal for Sloan-Kettering to set up a clinical program to do palliative care that the institution had approved at the highest levels and had sent out for funding. When we didnt get external funding, they decided the proposal wouldnt go forward. So I actually had in my file cabinet, and a copy in my brain, a proposal for the creation of a palliative care program that would include a consult team, an ambulatory practice, a homecare piece, and some other components, including an academic component. So when I was asked by the executive VP what would you do, I said, I would do this. They let me talk for a period of time, and then they were very cordial and said thank you. They said, Well get back to you about the grant. Then I got a phone call a couple of days later, and they said, Suppose we were to fund everything that you said, would you be interested? I said, Well, of course, but its quite a lot of funding. If there was real seriousness, I would certainly want to discuss it because theres no place in the country that is really doing this in a way that we talked about. A couple of more days went by, and then I got a call from senior management again and was told that they had discussed it and decided that they would go for it. I still didnt really believe it until I got a visit from the Chairman of the Board of Trustees at Sloan Kettering [Beth Israel?]. He walked into my office, and the first thing he did was look around and said, Do they always treat you like this? Then the second thing he did was to say to me an extraordinary statement that an academic physician may never hear in a whole lifetime. The man said, I control a budget of more than a billion dollars. We want you to come. Just tell me what you want. After the conversation ended, I walked out in the hallway and my secretary was there. She looked at me, and she said, You look a little pale. It didnt go well, right? (chuckles) I just said, I got the most extraordinary statement Ive ever heard. Anyway, to make what turned out to be a long process just short for the telling, I ultimately put together a proposal that included not only a palliative care program but, at their request, a pain program, and they essentially invested in the development of an entity that would include a palliative care program that included moving the preexisting hospice program the institution had into this entity. It included a separate chronic pain program, it included management of a fourteen-bed inpatient unit, and it included some initial startup money for an academic piece, which we called the institute. I was then told to make this work. I had another discussion after I realized that they were serious, and I said to them, What would you think that this entity should be? I said that I dont understand how the hierarchy works. I said, We really couldnt be in another department because we cross so many departments. I said, Would you want to call it something like a center? The response of the COO at that time was to ask me how I perceived the scope of this thing, and I said, If this was something other than pain and palliative care, youd almost say it was a department. Much to my surprise -- I really said that as an illustration because there were no departments, and I had no sense that an institution would be willing to create a full department devoted to this. But much to my surprise, they said, Well, we could do a department. Then shortly thereafter, I got a telephone call from the CEO, who said, A department it is. In fact, the words of the CEO, Robert Newman at that time, to me was, Well do it first, and I guarantee you in a few years therell be others doing it. Anyway, by the time mid-1997 rolled around, I had a written agreement that essentially created a Department of Pain Medicine and Palliative Care, startup funding for an institute, it included the opportunity to hire a group of physicians and nurses and social workers, psychologists. MARCIA MELDRUM: How many staff do you have? Just give me an idea. PORTENOY: As of July 1, well have ten physicians, we have about sixteen or seventeen nurses, a psychologist, a social worker, a chaplain. In our inpatient unit, were fully staffed for now an eighteen-bed inpatient unit, and in our hospice program, we have about sixty-five or seventy full-time _____ doing hospice work. Then in our institute, which is now completely philanthropically funded, we have about twenty-two people, if you include our trainees. Altogether, the department has about a hundred and five, a hundred and ten people in it. Its pretty extraordinary. Essentially, everything that I had wanted to happen over the course of the five years has happened. I still feel that were battling the sustainability issue, which is to demonstrate clearly to the institution that pain management and palliative care can be self-sustaining financially. Palliative care is inherently not self-sustaining, so the goal in this department is to show that the revenues that are created through pain management and through our research work will support us enough to allow us to maintain this palliative care program. The institution still remains extraordinarily supportive, and that has allowed us to go forward. But now we have an ambulatory practice in chronic pain management that involves seven physicians in multiple disciplines: neurology, physiatry, anesthesiology. We provide a multimodality care which incorporates drug therapies, psychological and behavioral approaches, physical therapy, interventional approaches, including implantations of high-tech approaches. In addition to that, we have an inpatient consultation team that creates an inpatient palliative care program for the medically ill. Most of our consultations are for pain, but we actually do inpatient palliative care. We have our own eighteen-bed inpatient unit, most of which is now filled with patients who are either hospice patients or palliative care patients, but we also admit our chronic pain patients there. That concept also of an inpatient space shared by pain, palliative care, and hospice is, I think, unique. We have a hospice program which has now doubled in size in the last year, has two hundred and fifty people average daily census. MELDRUM: And those patients are mostly cared for at home with visits? PORTENOY: Yes. Ninety-six percent of those patients are homecare patients. We also maintain an acute pain management program here in this institution that would be postoperative pain. On the clinical side, basically everything that I had hoped would happen in terms of the program development has happened, and if we do the right thing in the next year, well be able to demonstrate revenues that the institution will be sure its sustainable. Hospitals in New York have taken a huge hit, like other parts of the country, in terms of reimbursements, so the issue of really demonstrating unquestionably that a service is cost-neutral or cost-beneficial is really on the minds of every chairman in every department. The other thing thats happened, just in terms of program development, is that weve been able to achieve everything Ive hoped we could achieve through the Institute for Education and Research in Pain and Palliative Care. We now have a research group that includes a physician, a chief research nurse, two other research nurses, and three research coordinators, all of whom are doing clinical trials and quality of life studies. We have program people doing a caregiver program, a pain and chemical dependency program, a program on complementary therapies, a website development program, and training programs for physicians, nurses, and social workers. We have an accredited training program for physicians in pain management, we have a training program for physicians in palliative care, a fellowship program for nurses, and a fellowship program for social workers. All of that has been philanthropically funded, which is -- you can tell a lot of what I do in my life is now raising money. (chuckles) MELDRUM: Is go around looking for money, yes. PORTENOY: The ability to create things in pain management and palliative care that inform, educate, train, raise consciousness for the public, thats really -- MELDRUM: Yeah, raise consciousness especially. PORTENOY: Yeah. The website work that were doing is very powerful stuff. We are now creating a distance learning program for pain management physicians. We have an incredible amount of information on our website for the public, as well as for professionals. I think the bottom line is that you can really reach so many people by that route now that its almost mandatory that people who are serious about changing things have to have that component to the process. Its a lot. And I have to tell you that in five years what my team here has been able to accomplish in terms of program development clinically and in terms of the research and education piece is much, much greater than would have been possible in a cancer center whose mission is the cure through the creation of primary treatment modalities and which has viewed palliative care and pain management as important but not central to the core issue. So as much as I have a soft spot in my heart for Sloan-Kettering, and especially for the people that I worked with, theres just no question that to get out of that center into a general academic hospital, a university hospital -- but not even a university hospital at the medical school, this is remote from the medical school so that its quite independent of the politics that afflict medical schools -- to have that kind of independence from a cancer center program or a medical school program has been an extraordinary opportunity. MELDRUM: Thats amazing. And the physicians that youre training, where are they going? Are they going to other hospice programs across the country? Are they going to cancer units? Are they just going all over? PORTENOY: Up until this point, we tried to train fellows in both pain and palliative care. Beginning in 2003, we were fortunate enough to become accredited as a pain program, and were actually going to split the training so that some doctors come in to be trained in pain and some come in to be trained in palliative care. Up to this point in time, I think weve trained about eighteen or nineteen physicians, and some have taken pain positions in private practice or academic positions, and a couple are doing full-time palliative care. Were in a situation now in the country where we have a huge deficit in the number of palliative care specialists. Theres a capacity issue. I think what will happen is, now that were tracking people to just become palliative medicine specialists, those people will come in, well select the ones who are really committed to the field, and theyll go forward and theyll become medical directors of hospice programs or directors of hospital-based palliative care programs. The pain doctors, this department has a different model than most departments because were not in any other department. We dont insist or encourage our trainees to be anesthesiologists or neurologists. They can be anything. In 2003, for example, our incoming group of trainees includes one anesthesiologist, two physiatrists, a psychiatrist, who are doing the pain piece, and the palliative care piece will be done by a pediatrician and an internist. When you say where will they end up, I think theyre probably going to end up remaining who they are. The psychiatrist is going to stay a psychiatrist, and the pediatricians going to stay a pediatrician, but theyre now going to bring forward this new expertise in pain or palliative care. MELDRUM: Which would certainly be ideal. PORTENOY: I think its really essential. Im now involved in helping to write new guidelines for pain training, program requirements for training programs. This group that Im working with nationally, we keep talking about flexibility. How does one, as a regulatory agency, essentially the ACGME, tell programs what they must give to their trainees but at the same time tell programs, given that its pain, youve got to be flexible, you cant train the anesthesiologist to do the same things as the psychiatrist because theyre going to think thats crazy. In this department, were really trying to be creative about it. Again, Im very, very pleased that the department and I myself now have this connection to the accreditation council of the graduate medical education because what we do -- first of all, we want to get the approval of those who are regulating and scrutinizing us, but at the same time, we want to influence it. We want to say, look, this is how it has to be. MELDRUM: Thats very impressive. I was going to ask you a little bit earlier where your patients came from, and this is a question which Ive encountered in a lot of hospice programs that Ive looked at across the country, and in some personal experiences as well. Theres a perception that youre a patient in a curative cancer program, or some other curative -- and then theres a point at which you stop that, and then you become a hospice or palliative care patient because the others have sort of given up on you. This dividing line is so distinct that many patients then put it off as long as possible. I dont want pain management now because it might affect my chemotherapy, for example. That seems to me to be a conceptual problem that needs to be addressed for doctors and patients. PORTENOY: Youre absolutely right. I think its been addressed and is being addressed by the leadership of hospice and leadership of palliative care in the United States, but it hasnt filtered down yet to either practitioners or patients. Basically, there is now widespread agreement that palliative care should be viewed as a therapeutic approach which is focused on quality of life throughout the course of a progressive incurable illness, and then intensifies at the end of life, where what it tries to do is to ensure comfort, address psychosocial and spiritual needs, provide practical support in the home, encourage open communication, and support the family. Palliative care is inherently a multidimensional process, and it doesnt begin when a person decides not to get chemotherapy. In this country, one of the reasons that weve gotten so messed up in our thinking about this is because in 1982 the government created the Medicare hospice benefit, which was an extraordinary piece of social engineering, one of the most successful government programs ever created. Unfortunately, thanks to the then head of the Office of Management and Budget, the hospice regulations were written with a six-month rule that has been widely misunderstood. The six-month rule says that a patient is eligible for hospice if a doctor certifies that the patients life expectancy would be less than six months if the disease were to run its expected course. Because of that, and because doctors cant predict prognosis very well, and because, in this country, patients want aggressive care, and for a variety of other financial reasons, the referrals into the hospice program tended to become very late so that the average length of stay in hospice now is about fifty days, and the median length of stay is less than twenty days. Which, of course, is a terrible shame because if you view hospice as a service delivery model, which is a government supported service delivery model in which patients are guaranteed access to a physician, a nurse, a social worker, a chaplain, durable medical equipment, bereavement services for the family, and free drugs as long as they relate to the primary disease, the government mandates that those are given to patients who elect the service, and it pays for it for a capitated system. This was the first capitated health care system in the U.S., where there were four payment lines, two inpatient, two outpatient, per diem rates. Everybody got paid the same. So this was never viewed as a way to help people die well by the people who created it, by the brain trust that went to the government and said, We need a benefit. It was never viewed as a philosophy, which is not to say that it wasnt philosophically grounded, but the benefit wasnt viewed as something pie-in-the-sky, and it wasnt viewed as dealing with the imminently dying. It was viewed as an insurance plan that would incorporate capitation and provide a service delivery model that would address the multidimensional needs of sick people. The hospice utilization has been so attenuated by misconception and bias and stigma that here you have this one program that the government guarantees -- and essentially has never been cut, its only grown -- and you have so many millions of people who could benefit from it, and they dont get access. Nowadays, hospice programs are trying to move upstream, but whats really happening in the palliative care movement in the United States is that hospital-based palliative care programs are being developed, like my own, and trying to link to hospices that exist. So in the going forward stage, what were trying to do is to create a vision of palliative care as a therapeutic approach that would incorporate hospice as a resource for end-of-life care within a broader model. Ideally, of course, what wed really like to happen is for the government to change the benefits and do away with the six-month rule and just to allow people to get these services. But in the current climate, this is unlikely to happen. What were really hoping for is that these hospital-based palliative care programs, which are all being funded through some patchwork of clinical revenues, philanthropy, investment on the part of institutions, goodwill. Its not a stable reimbursement stream thats keeping these programs going, but notwithstanding that, theyre popping up in hospitals all over the country. Its a tremendous movement. And if we can get those programs to link with existing hospice programs, and we get hospice programs to understand how to promote themselves so that utilization increases, well be in a much better situation. Hospices, by and large, are small in the U.S., most are less than fifty patients. Because capitated systems work on a risk pool, which means that you need a lot of patients -- MELDRUM: -- patients to make it worthwhile, make it pay for itself. PORTENOY: Thats right. Basically, what a risk pool boils down to is that you count on some people not costing much money so that those who cost money can be supported. Hospices at fifty patients cant really make use of the risk pool, so what ends up happening is that the services they offer become more constricted. My own hospice has dynamic leadership right now, and we have whats called an open access policy, which is another paradigm that were trying to promote as fundamental to try and improve palliative care. What open access means, basically, is that everybody can come into hospice as long as two things are true. One is that a physician will certify you, and the other is you elect it. It doesnt matter if you want chemotherapy, it doesnt matter if you want TPN, it doesnt matter if you want dialysis. As long as the hospice is large enough to accommodate those huge expenses by a risk pool, we will take any person. Of course, that handles something thats been a fundamental problem in the system, which is that there is this misconception, or this system of denial, that basically says that patients with diseases that have primary therapies are in a curative mode. For example, patients who have metastatic lung cancer, physicians know that the chemotherapy being given for that patient is not curative. The goal is to prolong life, so from one perspective, the goal is palliative. So all chemotherapy in lung cancer is palliative. All chemotherapy in metastatic colon cancer is palliative. All of it is palliative. Then if you say you mean primary therapies are palliative, then you get into this logical disconnect where youre basically saying if you want this kind of palliative therapy, youre not going to have access to that kind of palliative therapy. That makes no sense. So the open access policy for hospices linked to hospital-based programs that provide palliative care models basically is trying to say that if a patient has a life limiting illness, and the patient has the need for a specialist-level service, the patient should have access to palliative care programs, and when theyre eligible for hospice, we need to say a doctor will certify them. They should get hospice even if they want to continue the primary treatment for the disease. Thats the model that were going forward with here, and were very, very excited about it. We have weekly meetings that we call our integration meetings, where were talking about the integration of hospice and palliative care. We now have a new grant to put two nurse practitioners in the community, one of whom will be a hospice nurse, one of whom will be a palliative care nurse, to work hand-in-glove to create better palliative care for homebound elderly patients with advanced illness. We have programs going on in our unit to try to do integration of hospice and palliative care. I think the bottom line for the future is that this area of palliative care where the need is so great just cries out for restructuring of the system in this way, the creation of specialist-level palliative care as a model linkage to a hospice with an open access policy, and together, that entity, or those entities, provide specialist-level care so that patients anywhere in the trajectory of a disease can say I need help and get access to it. The last thing Ill say about that is that that whole concept, that whole paradigm, relates to the access to specialist care. The implication is that most people who have life threatening illnesses and palliative care needs of one type or another should be able to get those needs filled by their primary doctors so that the emphasis now to create specialist-level programs and to create specialists has to be mirrored by another effort to improve understanding and skills of primary care doctors, nurses, social workers, and chaplains. And thats happening. The American Medical Association created the Epic Education of Physicians and End-of-Life Care Program. I was the co-principle investigator on the first phase of the development of that program and sort of helped develop its initial structuring. That program has reached a couple of hundred thousand doctors so far to tell them what palliative care is and some basic skills in pain management and symptom control and providing access to other support services, how to manage the imminently dying patient, that sort of thing. The goal has to be to continue that educational program at the primary care or at the level of the specialist who is an oncologist, a geriatrician, so that they can offer the palliative care to patients at a level below the level that calls for specialist-level involvement. All of those constructs are being played out here. We think about them all the time, and what were trying to do is to continually evolve the model, run our patients through the model to see how we do, and then to try to help people understand what were doing. I really feel that this sort of program is, for me personally, the next step in what Ive been doing in my career, moving from pain and cancer pain and some of those issues, which I still do. Day in and day out I still do those issues. But this new step, which is to really think about the broader model of palliative care and how that can be programmed into the health care system, what kind of education is needed, and what kind of research is needed. Thats where I am right now. I think that many people who are in cancer pain, or who have an experience in cancer pain as part of a broader specialization in pain management, are moving into that too. Because the bottom line is you cant take care of people who are very sick, you call to see them for pain, and then pretend that all you have to do is make them feel better and all the problems related to their terrible disease are going to get better. It doesnt work like that. MELDRUM: For sure. Thats almost inspiring. Wow! Were getting someplace. There was a paper that you co-published in 97 on the endorsement of assisted suicide, and I was just wondering about your views on this. You were talking earlier about having a patient who was admitted here to Beth Israel -- that was obviously before you came -- who was going to be taken off the respirator. I just wanted to know if youd like to talk about that a little bit. PORTENOY: Thank you for remembering that paper. That was one of the projects I enjoyed the most that got published in a place where absolutely no one ever read it. (chuckles) But it actually was a great idea. This was a paper that was done with a few collaborators, including Nessa Coyle. We were interested in assisted suicide and the desire for hastened death. Just like in breakthrough pain, the question was, how do you measure that? Can you measure it? Because without measurement, there can be no science. So the question is, how do you measure that? People had obviously done many surveys, but we thought about it for a while and decided that a simple survey wasnt going to be that informative and we would try something a little bit more creative. What we did was to create several vignettes, patient vignettes, that ended up with the question, would you help this person kill himself? For example, we created a vignette of a woman with breast cancer who underwent surgery and was cured but was very distressed by the way she felt, the way she looked and asked her doctor to give her pills so that if she needed to or wanted to, she would kill herself. We expected that the response to that would be almost uniformly no, we dont endorse assisted suicide in this kind of person, and we dont help the person. Then we created a vignette of a soldier on a battlefield who was walking with his friend, and his friend stepped on a mine and was seriously injured, and the enemy was approaching, and the seriously injured soldier would not survive. You knew that as the persons friend, and the soldier says, Kill me, because if the enemy gets me, Ill be tortured, or something like that. We expected that a larger proportion of people would endorse assisted suicide in that circumstance. So we had these two vignettes at opposite ends of the conceptual spectrum, and then we created other vignettes that we thought were in the middle. That was our measure, to determine the extent to which a professional would endorse the request for assisted suicide. We gave this to a group of physicians, a group of nurses, and a group of social workers and got very, very interesting data. In addition to the questionnaire, we gave them a measure of burnout, a measure of religiosity, and we gave them some questions to ask them how confident they felt in their own ability to control pain and symptoms. Well, maybe not a surprise, we ended up with a series of results that were just, to me, so much fun to think about. We found out that there were big differences between religions, that Catholics, for example, were very low to endorse assisted suicide. We found out that there were big differences between disciplines. For example, social workers were much more likely to endorse assisted suicide than were doctors and nurses, which we think makes sense because social workers dont know much about the treatment of symptoms but they know a lot about autonomy. Then in a multivariate analysis we found out that three things did, in fact, predict the willingness to endorse assisted suicide across disciplines. Number one was the extent to which you were religious, religiosity. The more religious you were, the less likely you were to endorse. Number two was the degree to which you perceived yourself as having palliative care skills. The more skills, the less likely to endorse; the less skills, the more likely to endorse. And the third was burnout. The more burnout, the more likely to endorse; the less burnout, the less likely you were to endorse. We published a paper that proposed, first of all, that this measure was a way to get at some very personal views about hastening death in a patient. Then we said that these views are not independent of personality, psychological states, situational factors, education, and that all of these factors contribute to the willingness to endorse assisted suicide. Then, obviously, if you followed that out and thought about it, it would lead to some very interesting ideas about interventions. For example, burnout is a really serious problem among professionals taking care of the medically ill. Obviously, the effort to identify it and treat it would be _____ intervention, if youre trying to deal with issues related to assisted suicide. The bottom line is that that was the study we did. We never followed it up with any replication or other studies. Ive always felt that one day Ill have a great research fellow and be able to make that study reappear somewhere else because I think there are some real interesting things there. It also led to a period of time during which I and the colleagues I was working with really spent a lot of time talking about assisted suicide. I think it was a very interesting time. There was a lot of controversy. Kathy Foley was very much involved with that issue, still involved to some extent, much more than I was. And we came to different places. Kathy, for example, has been very opposed to assisted suicide at any level in any way. MELDRUM: Yes, absolutely. Thats a reflection of her religion, I think, in part. PORTENOY: I think as well, too. For me, I came to the conclusion after a lot of thought about this that I needed to be publicly opposed to the legalization, and the paper, the research, in part, helped me rationalize that. Not only did my understanding of how undertreated symptoms were and how minimal palliative care knowledge in the community is led me to think that it wouldnt be a good idea to give people the right to request assisted suicide when they could access care, but also the recognition that how physicians respond to that is determined by things like burnout made me say, Listen. Theres too much variability in how people are going to respond to this. So I came to the conclusion that legalization of assisted suicide would be an unjustifiable thing; although, I also acknowledged that in my introspection, I could imagine a state of being where the suffering was sufficient and was untreatable so that I would hope that someone would help me. I think thats the struggle. You see some very good people who are really struggling with this, because they say -- and I should say that this is now where the argument has basically gone after a few years of sort of vitriolic not helpful argumentation. Things have really now moved to a more centrist perspective on the problem. The problem is that, yes, wide legalization is going to open us up to the potential for abuse, so thats a problem. But making it illegal means that you can never reach out to those individuals who truly have intractable suffering, where the humane response might be to help them. MELDRUM: And they have nowhere to go otherwise. PORTENOY: Thats right. Unless you say that for religious reasons I wont countenance that help at all, which, again, most people dont in this country, then youd end up with a situation where most people -- and this is what the survey showed -- most people would say well, if the suffering is really bad, someone should help them. How do you reconcile the concern about abuse if you open it up against the concern about not being able to adjust the aids of these suffering few people? There has been no resolution of that. We are where we are. We have the opportunity to pursue assisted suicide in Oregon, but not elsewhere. How thats going to play out in the next fifteen years, I dont know, but I wouldnt be surprised if more states legalized it. I dont think well have a federal statute, but I wont be surprised if it goes statewide. Nothing has changed in the last fifteen years for me to change my view. I would still be very concerned in states other than Oregon. I know things have not gone poorly in Oregon, but its a different kind of state than New York and California. I cant imagine expecting the same cultural and medical response in a state like California. MELDRUM: Theres really a lot of homogeneity in Oregon and a certain amount of mental agreement on what this means. You couldnt get that in California. PORTENOY: Thats right. And the population density is less. MELDRUM: I think those support systems are probably a little bit stronger. PORTENOY: And there is evidence that since the law got passed, there has been improved palliative care services as people try to react to the concern about the lack of access. Those, again, who ended up being proponents of this are saying that if that were to happen on a national level, that would be the biggest jumpstart for palliative care anywhere in the country. And that may be true. So you can see that whenever you look at this complex issue, you can have very good and well-informed people disagreeing. Where the rubber meets the road is, do you legalize actions that end up in the death of the patient -- intended death of the patient -- or do you not legalize those actions? Thats where the rubber meets the road. I still end up saying do not legalize those actions. But Im certainly comfortable saying well, maybe if they were legalized, wed see twenty years of progress in palliative care compressed into two years as every state and local government and the federal government said we have to improve access. Those are the complex issues. MELDRUM: Because we cant set conditions for people to just choose this because its their only option. PORTENOY: But I did have fun with that paper. That was a great paper. MELDRUM: It sounds really fascinating. The research behind it and the way you came up with it sounds -- okay. There was another paper, and this one is more recent, on aberrant drug taking behavior in cancer and AIDS patients that I thought was quite interesting as well. RP: In the last five or seven years or so, Ive really viewed it as an avocation of mine to look at this interface between pain and chemical dependency. The genesis of that was in the, I guess, mid-1990s I became aware that chemical dependency was an important issue, and I realized that my education about that was really severely lacking. In fact, I had a very significant moment when I recognized that I was recognized as a strong proponent for the use of opioid drugs and expanded use of opioid drugs among patients with chronic non-cancer-related pain, and that abuse addiction and diversion were real risks, and that I had minimized those to such an extent, in part because I wanted to promote the appropriate use, but in part because I didnt know that much about it. So I took it upon myself to learn more. I was given an opportunity to write a chapter on pain management for the Textbook of Substance Abuse, which is a major textbook in the addiction medicine field. This was the first textbook that had a chapter on pain, and I took that opportunity to learn as much as I can about that. I was also approached by a group of people who wanted to put on a conference about pain and chemical dependency. That turned into the first International Conference on Pain and Chemical Dependency. We expected about fifty people; about five hundred and fifty showed up, so it was a big issue. As I spent time thinking about that interface between pain and chemical dependency, at that interface were issues related to neurobiology, issues related to social policy, issues related to medical education, but there were also issues related to clinical practice. In the area of clinical practice there were several important issues. One issue, which never made me feel proud once I realized it, was that there was a huge population of people with chemical dependency who those of us promoting the expanded use of opioid drugs almost pretended didnt exist. Because if you look at the writings of myself and other colleagues who are writing favorable things about opioid drugs, you always saw a comment that said that the risk of abuse and addiction was very minimal in patients with no prior history of abuse. Well, if you look at the data out there, the proportion of people in the United States who have a history of abuse is huge. And if you look at the numbers of patients who are actually addicted, who have diagnosable substance use disorders, the numbers are huge. And if you look at some populations who have a lot of pain, like patients with HIV and patients with head and neck cancer, just to name two, the proportion of patients with a history of drug abuse and addiction is huge. So how can one in my position, trying to educate about this, make a glib comment that you dont have to worry about it if the patient has no prior history and not say something about what do you do when a person does have a prior history. The second issue clinically, which was equally as relevant, was what do you do in patients who are receiving these drugs, whether they have a history or not, to minimize the risk that theyre going to develop abuse and addiction? What is the risk? How do you predict it? How do you monitor drug use? What do you do if a person develops behaviors consistent with abuse and addiction? To work on this issue more, I basically felt that we had to get the definitions right. And again, this was not unique on my part. There was a lot written about -- a lot still being written about getting the definitions right. There was a lot written about defining addiction and pseudo-addition and tolerance and dependence and physical dependence correctly. I also came up with a concept that was derived purely from my clinical experience, not empirically derived, but purely from my clinical experience, which I think has had some really interesting legs, and this is the concept of aberrant drug-related behavior. What I realized when I was writing about this is that the patient brings to the therapeutic encounter behaviors that may be verbal or may be physical and that those behaviors are essentially data that tell the clinician about the patients interaction with the substance. These behaviors, which you could call drug-related behaviors, allow the clinician to make inferences about whether the patient is being responsible, adhering to the instructions of therapy, misusing, abusing, or engaging in a pattern of compulsive use consistent with addiction. What I did one day -- I want to say that I was sitting there in a drug-induced stupor when the thought came to me -- but I just simply wrote down every behavior that I had ever seen as a clinician. This is true. I just sat down, and I began to make a list. I began to make a list of behaviors that I ultimately put on a table and called -- END OF TAPE RUSSELL K. PORTENOY INTERVIEW TAPE THREE, SIDE ONE RUSSELL PORTENOY: These were behaviors that were probably more predictive of addiction behaviors, like forging prescriptions or taking an oral medicine and injecting it or stealing drugs. Then there were behaviors that most clinicians would perceive as being red flags but more difficult to interpret as predictive of addiction. For example, the patient escalating the dose once or twice. Perhaps the clinician didnt tell the patient that that wasnt allowed. Or the patient might use a drug for an effect not intended by the clinician. For example, as a clinician, its very common for people to come and tell us that they take their opioid at night to help them sleep. Is that something to worry about, or not? Or we have patients who describe psychic effects not intended by the clinician. Whenever I tell this in an audience, a room full of people who are trying to learn about this, I always get a giggle out of this because doctors really have had this experience. A patient will come in, and theyll say to the doctor, Thank you for prescribing this drug. I really, really like it. And the clinician immediately has the hairs on the back of his head stand up and say, Oh, my gosh, I didnt want you to like it. I wanted you to be comfortable, I wanted you to function better, I wanted you to have a good quality of life, but dont tell me you liked the drug. So you can see that these behaviors, if you label them -- maybe the term aberrant drug-related behaviors is a bit provocative, but you get the sense. These are red flag behaviors. These are behaviors that occur in the clinical context that cause the physician to say, What am I looking at here? Whats the meaning of this? For years, I and my colleagues, like Steven Passick, were writing some papers, review articles, basically saying that what we now need to do is to learn the principles of prescribing but also learn the fundamentals of risk assessment and risk management, and to learn risk assessment and risk management, the concept of aberrant drug-related behaviors is very useful. What the clinician has to do is to structure therapy in a way that allows him or her to assess for the potential for aberrant drug-related behaviors over time. Then if aberrant drug-related behaviors occur, two things are necessary. The first is actions that control the behavior, and the second is to adequately diagnose the behavior. That actually led to another concept, which was the concept that aberrant drug-related behaviors actually have a differential diagnosis: addiction, pseudo-addiction, other psychiatric problems, like impulsive drug taking related to personality disorder, encephalopathy or confusional states causing aberrant drug-related behavior, family issues, and criminal intent. I think that the understanding of aberrant drug-related behaviors as having a differential diagnosis resonated very nicely with physicians who are into that kind of thinking. MARCIA MELDRUM: Can you just distinguish here between addiction and pseudo-addiction? PORTENOY: Sure. Pseudo-addiction is the term that was promulgated by David Weissman and David Haddox more than ten years ago to describe cancer patients who engaged in behaviors that were interpreted as drug seeking, but they were doing it because their pain was out of control and they were desperate. Improved treatment of the pain, which often involved greater access to drugs, paradoxically led to a reduction in the behavior. So they coined the term pseudo-addiction. That term has exploded since that time and has been applied to everything, like even patients with known addictive disease engaging in relapse behavior. Ive always been in favor of that expansion because the bottom line is that things are complex in the clinical setting, and pain causes people to do things that they might not do otherwise. So if you have a patient who is relapsing into drug abuse, that doesnt mean that pseudo-addiction isnt part of it. You cant say that pseudo-addiction and addiction dont coexist. The reality that the process, the phenomenon, of pseudo-addiction might be occurring just needs to be on the front burner all the time because clinicians need to realize that unrelieved pain can cause people to engage in behavior they wouldnt otherwise do. So thats what pseudo-addiction is. Obviously, a person who engages in a red flag behavior, an aberrant drug-related behavior, one possibility is that theyre not addicted but theyre pseudo-addicted. Now, obviously, the knowledge and the skills of addiction medicine, at least to a fundamental level, is very important for a clinician to make sense out of all this. For example, Ive actually had clinicians come to me and tell me that their patients are buying heroin off the street, grinding up hydromorphone tablets and injecting it, and they think its pseudo-addiction. I would challenge that. I think there is a degree of aberrancy thats so extreme that one cant say that pseudo-addiction explains it all, because the social constraints are just being discarded by the patient, so theres got to be more going on there than just pseudo-addiction. The bottom line is that the paradigm of aberrant drug-related behavior linked to a differential diagnosis of obvious behaviors, all of which fits into the general understanding of risk assessment and risk management, thats something that has been brought forward to the pain community and to the primary care community to a lesser extent, and now needs to be brought forward even more because its really fundamental to getting these drugs used appropriately. Having said all that, Steven Passick and I, some years ago, recognized that ultimately we have to do research on this issue, measure the behavior to find out the prevalence, and thats going to help us understand what the real risk of opioid use is. We recently developed a simple check-off list of the aberrant drug-related behaviors, weve applied it to several populations. Theres another paper now that just has been completed that presents some information about the prevalence of these behaviors in a population of patients with AIDS and a cancer population with no history of AIDS or substance abuse. The idea is to create a model -- first of all, a paradigm for clinicians to use as they give this therapy, but second of all, an approach to measuring behavioral responses that could then be used to begin to answer these questions, like whats the real risk? So that people like myself wont get up in front of audiences and say dont worry about it if the person doesnt have a history of abuse, which is ridiculous. You have to worry about it. MELDRUM: Okay. Thats very good. Does that also give you a way of treating patients who do have a history of abuse in a rational way? PORTENOY: Thats really a wonderful point, and I have said this over and over again. Clinicians will feel empowered to treat people who are the difficult cases, the challenging cases, if they have the skill set and if they dont feel theyre under inappropriate regulatory scrutiny. The skill set for treating these patients absolutely has to include an approach to risk assessment and risk management, which is different than the approach you would use in, as I said earlier, the eighty-year-old teetotaler who has osteoarthritis pain. That approach to risk assessment and risk management in that patient might be the statement, have you ever had a drink? Not in seventy years? Okay, well, lets not worry about it. In contrast, the person who is working a recovery program, particularly, lets say, a drug-free recovery program with a lot of peer support, going to NA meetings once or twice a day, who develops a cancer or has HIV neuropathy or has developed pancreatitis or something serious like that, and you say I want to start on opiods, well, not only do you have to create a structure for prescribing that allows very close monitoring, but you have to be able to reassure that person that youre going to help them avoid relapse. Some of them are just as worried about relapse as the physician is. The bottom line is, understanding something about the risk management piece, which includes structuring therapy and monitoring aberrant drug-related behaviors, it creates an ability to treat patients who are challenging and also creates a scenario that would reassure those who need to be treated but would otherwise be afraid of it. MELDRUM: Thats very interesting. Okay. Clinically important differences in pain outcome measures, and outcome measures in general. Heres an outcome measure: Theres less pain. Or the pain is less intense. This is a basic question in pain management altogether because a significant difference for one patient, again, may be a lot bigger than another patient who may be happy with a relatively small reduction in intensity. How does that work out clinically? PORTENOY: Theres been a lot of thinking about this from several different perspectives during the past twenty years. Its important to distinguish the issue from a methodological perspective from the issue as a clinical problem. Im a clinician, so youre asking me the question, how much relief is enough? The answer to that is that a good clinician is going to assess not only pain intensity but a whole range of pain-related phenomenon, including interference with function, global quality of life, family relationships, a whole range of outcomes, and will, in a very open way, tell the patient his or her view of these outcomes on the priority list of what were trying to improve. Some patients, for example, who have relatively limited disability but a lot of pain, the primary outcome is just to get more comfortable. You know those patients will immediately capitalize on comfort by functioning better. They have the skills, they just cant activate them because they hurt so badly. For those patients, we might say that the overriding goal is just to reduce that pain to the point where you can start to function, because we know that they have that ability to start to function as soon as the pain is less. The patient who is very disabled by pain, the patient who comes in and says the pain is ten out of ten all day long and all night long, the patient who hasnt been able to engage in pleasant social relations or had an intimate relationship because of the pain or hasnt been able to work or enjoy avocations, for a clinician to say that the only goal there is to lower the intensity of the pain without recognizing that the real interest in that patient has to include the disability piece. Thats just a mistake. Clinicians can chase their tails on that. How many patients have I seen referred to me where multiple interventions have been done? One surgery after another, a trial of an injection, second injection, trial to do a _____ stimulator, trial of an intrathecal infusion, and one intervention after another is being done, but the patient is not at the same time undergoing any psychological assessment or treatment, is not undergoing any rehabilitation approaches. Theres no effort to address the co-morbidity at the same time. So you say, if the patient felt better, would you really need to? And the answer is of course, because a skilled clinician should be able to look at that patient and say that the likelihood of a favorable response to pain, if these other issues are not addressed, is going to be less, plus even if the pain is lessened to some extent, the quality of life impact of that reduction is going to be less unless you help them get back their lives. I think from the clinical perspective, the answer is both simple and very complicated. The simple piece is no patient with chronic pain should be treated unless a comprehensive assessment has been done that allows the clinician to formulate what the treatment goals are in relation to pain as a sensation, pain-related phenomena, pain-related distress, and quality of life. The hard thing is that, especially in our current health care system where its very difficult to help people get multiple therapies, you often cant do anything for a patient except to offer some comfort measures. I saw a patient in my program just a couple of day ago, for example, who has very severe back pain but is not a surgical candidate, despite having structural disease of the spine, and is totally disabled and spends most of the day in bed and really would benefit from analgesic therapies that might include drugs, injections, and maybe even more aggressive things but would be very unlikely to capitalize well on those measures unless someone addresses the fact that shes totally deconditioned, is really enmeshed in a disability system, has taken on the view of herself as a professional patient, as an invalid. The sad fact is that shes indigent and has limited family support, so in the context of those limitations, there are no psychological interventions that are feasible for her, there are no rehabilitative interventions that really would help her or that she could access. So were just going to try to give her something to help her feel a little better. Its really inadequate. From the methodological perspective, I think the concept of measuring pain as a multidimensional phenomena has really been there now for a long, long time. Then the only question is, what dimensions? The only other question is, what concurrent constructs? In the cancer population, for example, all the pain surveys that Ive ever done -- with just one exception, which was the first one I did -- but with all the pain surveys Ive ever done, weve also attached measures to look at other symptoms, to look at global quality of life, to look at performance status. In some of the newer surveys, theres actually been some very comprehensive assessment of psychological functioning, family functioning, the costs associated with care. I think the bottom line is that, from the perspective of an investigator, if you have a question that you want to pursue by measuring pain in a population of patients, the first question, what decides pain intensity? is relative to measure from the perspective of the pain complaint itself. Then, what pain-related co-morbidities are important to measure from the construct of pain as having a multidimensional perspective? Then finally, what concurrent problems from a broader quality of life or disability perspective, should be measured? As usual, from a methodological perspective, were always battling between the desire to measure everything and the desire to have a response rate greater than one. (chuckles) You always find one person whos going to fill out everything, but if you want to do a survey of a bunch of people and only one fill it out, the data arent going to be that clean. Thats the struggle. But, again, I think youd be surprised. At least in a population that comes to a cancer center -- and I think thats very important about selecting your measures, by having some sense of what your population is, and that sometimes requires a lot of pilot work before you know. But at least in a population in a cancer center, if you have a research person whos got that high follow-up and a good personality, you can get people to fill out a lot of information and give you a lot of detail about what their experience is. MELDRUM: I think so. Theyre probably interested in telling you. Okay. Thats very interesting. Tolerance. This should have followed aberrant drug-taking behavior, but thats okay. I went to the luncheon at the American Pain Society meeting and heard you, I guess, debate with the lady of California. PORTENOY: I dont think it was much of a debate. MELDRUM: No. It really wasnt much of a debate. Obviously, tolerance is something you need to be aware of, but sometimes it seems to be sort of a straw man, something which may not even be there, so I wonder if you want to talk about that a little bit. PORTENOY: I think its that simple. Its a bugaboo. I think everybody knows that tolerance to analgesic effects can occur. Every so often theres a patient who takes a medicine, and everything else looks stable, but after a short while, the dose thats being administered doesnt work anymore. And increase the dose, and after a short while, it doesnt work anymore. That phenomenology is encountered in the clinical setting. The issue is that its just not the modal response. Its not the phenomenology you usually encounter. What clinicians usually encounter is the patient who stabilizes at a dose, says this is a favorable balance between pain relief and side effects, let me stay here, and then they remain there for a very long time. Typically, when we present with the need for an escalation, something obviously bad has happened. Theyve fallen, an MRI shows that theyve collapsed another _____ body, theyve had a period of increased activity, they have an increase in pain. So something has happened that seems to have driven the pain beyond the ability of the medicine to suppress it, so you increase the pain medicine to a higher level. As a result of that scenario, I and many other people who use opioids have a handful of patients who take enormous doses. I have patients with arthritis who are taking three grams of morphine a day for a long time. Obviously, that is only rational and its only justifiable if the person is clear that it helps, they have no serious toxicity, and theyre responsible in their use of the drug. Most people take much, much less. Studies suggest that the vast majority of people will take below four hundred milligrams of morphine a day on a stable basis for a long time and not need anything more than that. I think the bottom line is that a clinician has to understand that tolerance is a phenomenon that exists as a physiologic potential. There are patients where the driving force for dose escalation appears to be tolerant because everything else is stable, but for most patients, theyve stabilized their dose, and the driving force for dose escalation, if it becomes needed, doesnt appear to be tolerant, it appears to be something thats easily demonstrated in the clinical setting. MELDRUM: Ive come to the end of my list. Is there something else that I havent mentioned that you think we should be talking about? PORTENOY: No, not really. Weve really touched on everything. MELDRUM: I usually ask whats going to happen in the next couple of years, and weve sort of been hearing about this service here. But what are you looking forward to in the next five years? PORTENOY: I think the palliative care movement is going to continue, but its going to slow down because the money thats been driving the movement is not going to be there. Despite the huge unmet need and the aging population, the health care system is really in turmoil. The political will to fix it is not there. Palliative care is not a mainstream concern. So I think that whats going to happen is that were going to see more and more really wonderful people get into it, professionals get into it, because its such a great field if you can tolerate an income thats otherwise smaller than it would be and a lot of stress in trying to do programs when you dont have the support. But the opportunity to help people with these skills is so profound that I think well see a larger and larger group of professionals get into it. I think well see it become a specialty, which will be a very important step. I think well see training programs develop. I think well see hospitals at least pay lip service to the need for the program. I think well see hospices develop more open access policies and grow. All of that will be fabulous, but I also think that this extraordinary progress that we think has been happening in the last few years is not going to happen at that rate anymore because the external money from the foundations will dry up, and the real way that things will get done at a federal level through regulation and requirements for education and system support, its not there, the will to do that is not there. In pain management, I think the most exciting things that are going to happen are really twofold. One is the science of pain physiology and pain pathophysiology is like unleashed, so its really too much. Theres no possible way that just a clinician like me can keep up with it. Its amazing. The other thing that will happen is that the science will generate new pain treatment approaches that are going to constantly come down the road, so new pharmaceuticals, treatment delivery systems, and technologies. Thats on the plus side. The downside is going to be that therell be, I think, more and more problem about access to specialist-level care because of reimbursement problems. Unless we fix it, theres going to be a large cadre of pain specialists practicing what I would consider to be less than quality care. Thats because we have inequalities in our system in education, and we have inequalities in our system in reimbursements, and it tends to try inequality of care. So for both pain and palliative care, both of which I hope to be around for a while doing, I think its going to be mixed, but basically theres going to be enough good stuff happening that I think Ill enjoy it. If we can keep going where I am by establishing this program as sustainable -- we have a critical mass here, and I think that a lot of the things that others are looking for as a model approach will be found right here, and Ill be in the center of it, I hope. Im pretty optimistic about that. MELDRUM: Its certainly a great place to be to watch things happen. Okay. PORTENOY: Thank you. MELDRUM: Thank you. Were concluding this interview -- I have about one oclock. Thank you very much. PORTENOY: My pleasure. 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"SystemyHMy--@Times New Roman--- O2 v-0 John C. Liebeskind History of Pain Collection              2 vy0   @Times New Roman---  2 0     2 0     2 0   @Times New Roman--- ,2 0 Oral History Interview       2 40    2 y0 with   2 0    2 80 Russell    2 8y0 K.  2 80 Portenoy   2 80   ---  2 U0     2 q`0     2 `0   @ Arial--- &2 -0 Ms. Coll. no. 127.     2 0 67   2 0   ---  2 `0     2 `0     2 `0    2   0 Conducted:    2 0 17   2 0 - 2 0 18   2 0   2  0 April 2003    2 %0    2 5 0 Interviewer:       %2 5w0 Marcia L. Meldrum        2 540     2 Q$0 Duration: ca.      2 Q0 3.25    2 Q0   2 Q0 hours    2 Q 0    2 m[ 0 Pages: iv   2 m0 ,   2 m0 5   2 m0 9   2 m0     2 `0   @Times New Roman---  2 `0   ---  2 `0   @Times New Roman---  2 `0    /2 0 History & Special Collec       2 0 tions   #2 0 for the Sciences      2 X0    42 '0 Library Special Collections           2  0    J2 !*0 Louise M. Darling Biomedical Library, UCLA              2 !X0    82 90 Los Angeles, California 90095          2 90 - 2 90 1798   2 940     2 Q0     2 i0    2 0 2013   2 0   @Times New Roman--- --  00//.. ՜.+,D՜.+, hp  UCLAl HOWARD FIELDS INTERVIEW.John C. Liebeskind History of Pain CollectionOral History InterviewwithRussell K. PortenoyConducted: 17-18 April 2003/History & Special Collections for the SciencesLibrary Special CollectionsBiographical SketchInterview History)Topical Outline (Scope and Content Note)Access to the InterviewTerms and Conditions of UseCitation InformationGRelated Materials in the John C. Liebeskind History of Pain CollectionAcknowledgmentsQSupport for the John C. Liebeskind History of Pain Collection and Oral History PINSERT PHOTO HERERussell K. 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