How can psychiatrists and other mental health professionals change the way they talk about bipolar disorder to effectively remove the stigma associated with it? To find out, Elizabeth Saenger, PhD, Program Director of Medscape Psychiatry & Mental Health, New York, NY, interviewed Gary S. Sachs, MD, Associate Professor of Psychiatry, Harvard Medical School, Boston, Massachusetts; Director, Bipolar Clinic and Research Program, Massachusetts General Hospital, Boston, Massachusetts. Dr. Sachs is also a principal investigator for the National Institute of Mental Health study on Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD).
Medscape: You have said that certain words or phrases that are used about mental health may be derogatory, and that we can improve the way we think about the disease and those affected by it if we change our language. Can you give me some examples of how today's psychiatrists and allied health professionals can improve the way they speak about bipolar disorder?
Dr. Sachs: Before we started the National Institute of Mental Health (NIMH)-sponsored STEP study (Systematic Treatment Enhancement Program for Bipolar Disorder), the NIMH conducted 3 focus groups in several different regions of the country -- 1 for patients, 1 for family members, and 1 for doctors. In these focus groups, investigators tested the response to different words to be used in the title of the study; 1 of the terms was manic-depressive illness. Roughly half the doctors thought that "manic-depressive" actually was the right word; others thought "bipolar" was a better term; and some thought other terms were better, which was kind of interesting. This was true in every region. But what was also true in every region was that among patients and family members, the score wasn't 50/50; it was 0% to 100% against manic-depressive being in the title. Surprising that we needed a focus group to tell us that nobody wants to be called anything with the word maniac in it. What a revelation! So of course the study isn't called manic-depressive anything, and we studiously avoided other terms that offended people.
It also turned out that calling this an algorithm study was offensive to everybody: neither doctors nor patients or their family members want to receive treatment in a cookbook, 1-size-fits-all fashion. They all described wanting individualized care. Patients want their doctors to use judgment and bring their expertise to practice. That really shouldn't have been a surprise. The medical profession, psychiatry in particular, has been putting out treatment algorithms for a long time. Yet we know algorithms aren't used and we wonder what's wrong -- why don't people use them? Well, it turns out providers don't want algorithms and patients don't either. What they really want is systematic, but individualized care. Finding a way to deliver it was what the STEP project was meant to answer. In those focus groups, several people made the analogy to the Wizard of Oz and wanting to be on the yellow brick road of recovery with their supports, including their professional care providers, so that we would all be walking along the path together. You know how the scarecrow says some people go this way and some people go that way -- instead, let's go down these paths together and let's see what we find, and if we find lions and tigers and bears, then okay we're going to take a different path. But if we can find the route back home, to get your life back, that's really what we're here to do. So being side-by-side with the patient, following these pathways back toward a healthy life, that's really what the STEP program adopted as its intervention paradigm, and it worked out very nicely.
Medscape: Do you think this emphasis on partnership and individualizing therapy is an historical change or do you think that there's a difference in the sampling that's produced the change?
Dr. Sachs: I do think there's a change and it all depends on which timeframe we're talking about. Before the dawning of the pharmacological era in medicine, in general, and psychiatry in particular, physicians spent a lot more time listening to patients, and going along and seeing what worked for people, trying to understand more broadly the narrative of people's lives. What's happened is that we've achieved a benefit from a rational scientific approach, albeit one that's somewhat reductionistic. I think now we've come to recognize that the reductionistic paradigm isn't the whole answer, and that managing lives, via lifestyle interventions, really does contribute a lot to positive outcomes. So, yes, I think we're realizing that the ideal is for the patient to be the center of the treatment, with us as navigators in their decision-making about which way to go, helping them measure the results, helping them in this iterative process to get expert guidance along with this more patient centered approach to their management.
Medscape: Going back to the idea that language might affect the kind of service we offer, and that our choice of words could become less stigmatizing, can you comment on some of the terms that are used to describe patients?
Dr. Sachs: What is important in all of this is not necessarily giving a Good Housekeeping Seal of Approval to one and only one tag. Let's explore with the person how they like to see their interactions with their supports, including their doctors. If someone told me that they didn't want to be called "patient," I think I'd have to take that into consideration. It's an interesting thing for most medical practitioners. "Patient" is actually an honored term and "consumer" is not, but if "consumer" is what appeals to a person with an illness, I'm not wedded to calling this person what appeals to me. I think we have to take those things into account.
Another important area where our vocabulary has led us into something of a blind alley is when we talk about treatment compliance and adherence, because it skips over a very important related concept. Compliance and adherence are the degree to which one accepts a treatment, but we could use a different term that is not only more appealing, but more meaningful: concordance. We talk about concordance being the goal of the interaction, the agreement between me and the person I'm working with to come to a wise decision. We want a process that produces more wise decisions in the most amicable way possible. For example, my internist says, "You could lose a few pounds"; if I agree with that, I can ask external supports to help me. When I go out and give talks now, I'll say to everybody at dinner, "If you see me having dessert, I owe you $50." I eat dessert all the time, but people come up to me at these dinners and we all laugh when it happens, and it makes me more aware; it's really neat, and I've lost a considerable amount of weight with just that. The difference between that scenario, where I am concordant with my primary care doctors' recommendations, and an example of discordant recommendations would be if you would go to a restaurant and pick out the person who could really lose a little bit of weight and when they order dessert, you go up to them and say, "I don't think you should have dessert!" All of a sudden you might even have a riot on your hands; you're going to be offending people. We need to use principles that lead us to be working concordantly with our patients.
We follow the recommendations Fisher, Ury, and Patton make in a book called Getting to Yes. They describe using principles of negotiation technique, where you begin by agreeing to agree about something. It doesn't matter whether we call this bipolar or peanut butter; what we're trying to do is smooth some things out and figure out whether we're succeeding with our intervention. If you happen to think that diet and exercise, or whatever you can get now at the store is going to help you lose weight, in all but a very few circumstances I can be okay with that. We can follow a kind of sequential care approach beginning with what's most appealing to you and we'll measure the outcomes. Using that sort of iterative process, through which we'll say "this worked" or "didn't work," will lead us to agree because if we do your thing and your thing works, I'm going to congratulate you and I'm going to tell you "let's stick with it," and we'll be perfectly concordant. On the other hand, if we're not concordant and you're not adherent to my plan, anything I do or say will offend you and won't work. So we want to make a concept like concordance center stage in the doctor-patient interaction, as opposed to adherence or compliance.
Medscape: Are there any other things that psychiatrists and allied health professionals can do to reduce stigmas, in addition to treating patients in a more humane way?
Dr. Sachs: I like the way you phrase it: is there anything else allied health professionals can do? One of the things we can do -- and we are somewhat limited because it's a societal issue -- we don't have to pathologize everything. We medicalize and pathologize as soon as somebody has the diagnosis, in part because that's just the medical-legal context in which we live, but also it's the role of the doctor. I don't have to be so worried if I can share the dilemma with the patient and family, by having frank conversations, by providing education for the family and the patient, we can do a lot better. We can achieve a much higher frequency of wise decisions. In the STEP program, everyone received a workbook that educated them about the illness, the common treatments, and our collaborative care model. We also sent a DVD home with them to share with their families, so that they could see what this was all about and we could speak a common language. If everyone understands what I'm talking about, there's a higher likelihood that we get a good outcome.
Medscape: It sounds like you're talking about having more of a partnership with patients to reduce stigma?
Dr. Sachs: Exactly. That's what this collaborative care approach really is all about. We want to be able to overcome some of the obstacles to the patient getting care.
Medscape: How widespread is interest in collaborative care and reducing stigma among psychiatrists?
Dr. Sachs: If you go on the Internet and search under "collaborative care" and anything such as that, lots of results will come up. But in real practice, the definitions are quite variable. With all the models of collaborative care you have to ask: what's the definition, who's actually collaborating, what does it mean? Some of the models simply mean that the psychiatrist talks to the primary care doc; we don't see that as what collaborative care should be all about. Some models are limited to the kind of interactions directly between the psychiatrist and his or her patient; we think that's a very narrow model of collaborative care. Some define good collaborative care as giving the patient any information about their illness or the side effects of treatment. We think that's really the bare minimum. For us, collaborative care is informing patients well enough that they can take an active role in the decision-making, an informed role on their own behalf, and that they can play a role in helping the other supports in their family and the broader community, if the patient wants them to be involved in helping him or her manage.
Medscape: So it seems that a part of reducing stigma is collaborative care. What other components are involved in reducing stigma?
Dr. Sachs: The aspect of collaborative care that will reduce stigma is improving outcomes, because there is nothing better for somebody than to be out there functioning. With collaboration and this iterative interaction around measured management, you get better outcomes. So when you're back at work, nothing is better than for people to see that patients who have this illness not only recover, but also they recover fully and they are back at work, they are back fulfilling their role as parents, and as contributing members of the community, as many of our patients do at very high frequencies. One thing that we can do to help reduce the stigma, is to get the word out about how often that happens. In cancer treatment they talk about 5-year survival rates, and with infertility treatment, the clinics can quote how often they're successful per embryo transfer. We need those kinds of metrics. The New England Journal of Medicine just published a study in which we used a more clinically meaningful metric: What percentage of patients get well, not in any single week, but a durable recovery -- how many stay well for at least 8 consecutive weeks? Typically, study results are based on what percentage of people have 50% improvement in any 1 week from their baseline score on 1 rating scale. That's not helpful to patients. What families and patients want to know is, what's the chance I can get all the way well within a meaningful timeframe? What percent of patients get there within 16 weeks or 26 weeks or 52 weeks? If we use those metrics, the public would see that it's a hopeful story; and because we could show year after year the trends and which of the drugs and therapies are performing better than others, the public would have a real chance of appreciating the progress that's out there.
If you use that metric, you can see that the mood stabilizers are every bit as good with or without a standard antidepressant added to them, so we don't really have to start people on standard antidepressants. And you can also see that any of the psychosocial interventions -- the 3 that we tested were cognitive behavioral therapy, family-focused therapy, and something called interpersonal social rhythm therapy -- is better than control conditions; the results were incredibly impressive. People who received those psychosocial interventions in addition to their mood-stabilizing medication got better at higher proportions, 110 days sooner on average, and stayed well longer. I think the message is clear: let's recommend that combination at the start. Let's tell them, "People with bipolar depression, we've got proven therapies."
The most common approach right now is to prescribe a standard antidepressant along with the mood stabilizer. Our data show that this approach really didn't add anything. So we can stop doing the 1 thing that didn't work and make sure that we offer -- because we can't compel people to do these things -- but let's at least offer these psychosocial treatments, and let's make it clear that these treatments are not based on resolving conflicts about your childhood. These really are the evidence-based psychiatric equivalents to physical therapy.
Medscape: I know that when Kay Jamison, Professor of Psychology and Psychiatry at Johns Hopkins, originally came out as someone who had bipolar disorder, or in her words manic depression, because I think she does favor that term since that's more what she feels like, people were very surprised. People in her department said, "You don't look like a manic depressive, you don't look like someone who's got bipolar disorder." To what extent do you think psychiatrists and allied health professionals have stereotypes of people with bipolar disorder the same way the lay person does?
Dr. Sachs: It's a very interesting question. I had known Kay then as well, and I was surprised. I've made the analogy to astronomy -- you can see the Big Dipper and once you've seen that, it's pretty easy to find the Little Dipper. But during the day you don't see either one of them. So we have these limited interactions with people, professionally and even clinically. Why should we expect that in a 1-hour sample of somebody's life, we're going to get to see them "look like a bipolar patient." We know these are episodic conditions. I know people who, for hours and sometimes even days, really seem perfectly fine. That's part and parcel of the illness and I think our problem is that bipolar disorder is a condition that's more analogous to heart disease than it is to heart attack. If you have a heart attack, you definitely have heart disease, but the day you are discharged from the hospital for a heart attack, nobody concludes you don't have heart disease, even though you don't look like you're having a heart attack now. So the fact that you've had heart attacks is one of the things that tells us that you have heart disease. We know that if someone has had a manic episode, it doesn't mean they're going to show it everyday, even during the episodes. But if someone has a documented history of manic episodes, he or she has this illness. At the medical professional level, we can agree that a manic episode really is a pretty well-established basis for diagnosing bipolar disease. It's predictive of the patient's prognosis and response to treatment. I don't think we should discard that lightly. I don't demand some kind of explanation for the episode like, "Well that actually happened because I was using cocaine," or "That happened because I was in the midst of divorce." Let's take that context as a piece of information without saying "Well they look good today." Well of course they look good today. Not everyone who has heart disease has constant crushing chest pain, or is diaphoretic and clasping their chest. So I think this medical condition called bipolar disorder is like many others.
Medscape: In terms of research on stigma and bipolar disorder, are there any questions or areas that you think are important to address?
Dr. Sachs: Stigma is a societal issue. It's interesting to me how frightened people become when they see unmodified psychosis. I remember when I was in training and seeing patients at the state mental hospital, walking through the wards in 1969, and it really made me question whether I could be in this profession. But actually that's really not what it's all about. Mental illness is frightening, but we have to understand it, and we have to realize that that's part of humanity, it's a part of all of us, and what we want to do is understand it to the degree that it's helpful through a medical perspective. Is it the same as having a frightening or distasteful medical condition? No it's not, but we can treat it and we can get the benefit of what the individual has to offer society and his or her family. If we look at it in that way I think it's positive for everyone.
Medscape: What direction for stigma research might be profitable, in your opinion?
Dr. Sachs: Deborah Deliyannides has done some very interesting work looking at the impact on the family, much of it in collaboration with us in the STEP study. I do think from her work you can move from characterizing what's available to providing the interventions. Once you can show that you can do something useful to treat a mental illness that also quiets down the stigma. Let's recognize how hard this is on the family but that we can manage it. When a rape victim comes into the emergency room, she is stigmatized, but we talk to them about what might happen the year after, the model of how [posttraumatic stress disorder] PTSD might or might not develop after this, what they might expect. Talking to people about that potential doesn't change the fact that they were rape victims, but these people have written that just knowing what to expect when they had the periods of psychic numbness or intrusive thoughts, experiences that they were told might happen, it was almost like vaccinating them. "Instead of thinking I was going crazy or something was wrong with me, I saw it as a kind of a natural phenomenon," which enabled them to let it go and actually get back to normal. I think we can do that with many of these conditions. Let's talk about it, let's talk about it publicly, let's get people to understand that they don't need to be frightened about the person who's experiencing it, that we don't have to scapegoat them. Let's understand ways to rehabilitate our society as well as benefit the patient.
This interview was made possible by AstraZeneca.
Medscape Psychiatry © 2008 Medscape
Cite this: Bridge to a Brighter Tomorrow: Bipolar Disorder in America: An Expert Interview with Gary S. Sachs, MD - Medscape - Jan 31, 2008.