Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Reframing Hope: Meaning-Centered Care for Patients Near the End of Life:

An Interview with William Breitbart, MD

Dr. William Breitbart, chief of the Psychiatry Service at Memorial Sloan-Kettering Cancer Center in New York City, describes his current research on a meaning-centered psychotherapeutic intervention that he has designed in order to help terminally ill patients with cancer sustain hope and meaning as they approach the end of their lives. Drawing inspiration and ideas from the works of psychiatrist and Holocaust survivor Viktor Frankl, Dr. Breitbart and his fellow, Dr. Mindy Greenstein, designed an eight-week, group-focused, manualized course of experiential exercises, which is being compared with an eight-week, manualized cancer support group intervention, to see how well meaning-focused care can address a constellation of constructs that he and his colleagues are calling "despair at the end of life." The component constructs of despair at the end of life include hopelessness, depression, loss of meaning, suicidal ideation, and desire for hastened death. In the following interview with Innovations Associate Editor Karen S. Heller, Dr. Breitbart describes the conceptual evolution of his thinking about despair at the end of life, and details the research on meaning-centered psychotherapy in which he is now engaged. Although the study is still ongoing, preliminary findings suggest that although both types of group intervention reduce patients' psychological distress and depression and enhance social support, the meaning-centered intervention is more effective in increasing spiritual well-being and a sense of meaning, and in reducing hopelessness and desire for death.

[Citation: Breitbart W, Heller KS. Reframing hope: Meaning-centered care for patients near the end of life. An interview with William Breitbart. Innovations in End-of-Life Care. 2002;4(6):www.edc.org/lastacts]

Beginnings

What was the rationale and impetus for undertaking your research on meaning-centered psychotherapy for patients with advanced cancer?

Our work on the meaning-centered psychotherapy intervention had its roots in research we began seven or eight years ago on the impact of pain on the quality of life of patients with HIV disease.^1,2 Around that time, there was a great debate in this country about legalizing physician-assisted suicide. During our HIV study, we undertook a little side study to get an idea of what factors predicted interest in physician-assisted suicide among terminally ill patients with AIDS . We discovered that depression and psychosocial factors, such as general psychological distress, concern about being a burden, and hopelessness were very important factors that predicted interest in physician-assisted suicide.³ Then, we started getting interested in a more general construct of desire for hastened death in terminally ill patients with cancer or AIDS. So, we designed a set of studies that looked at the relationship between depression and desire for hastened death in both groups of patients. This was an interesting area of research for me, because in my clinical role, as the psychiatric consultant for the Pain and Palliative Care Services at Memorial Sloan-Kettering Cancer Center, I worked closely with clinicians on those services regarding psychiatric issues in cancer patients, generally, and the stresses patients may experience at the end of life, in particular. One of the more common reasons I get called to see patients is because they have expressed a desire to die, or may even have asked a physician to put a stop to their suffering by killing them. Close to 20-25 percent of the patients whom I was seeing were people in great despair who wanted to die, and who wanted their death hastened. Although not all of them were asking their doctors to assist them specifically by giving a prescription or euthanizing them, they wanted to die fast. They couldn't deal with the suffering, and saw no meaning or value in living.

As a medical psychiatrist working with terminally ill patients, I initially focused on things like depression, diagnosing it accurately and treating it, and that in itself was a great challenge because one had to overcome several misconceptions. The first misconception was that if one is terminally ill and has four to eight weeks to live, it is "normal" to be depressed. As our JAMA paper⁴ and other studies of terminally ill populations show,^5,6 actually not everybody who is terminally ill is clinically depressed. In fact, in our study only about 17 percent of patients, who had an average of about 28 days of life left, had a clinical depression.

The second misconception was that if somebody is depressed in the last weeks or months of life, one can't treat that effectively. This myth is also wrong. There are time constraint issues, but using innovative kinds of antidepressant drugs, in particular, psycho-stimulant drugs, can actually provide a rapid onset of antidepressant activity in this population of patients. These drugs are very useful to help improve mood and energy and increase appetite. So, when evaluating a patient who expresses desire for hastened death, one has to be very sensitive to the possibility of unrecognized, untreated depression and to treat it aggressively.

Third, if your goal is truly to provide comfort care to patients at the end of life, it's not enough just to control the physical symptoms of a disease or its treatments. Most people understand that pain is a distressing experience. If pain were uncontrolled at the end of life, we wouldn't see that as a good death or a good outcome of care. Yet, I think many clinicians may not identify depression, anxiety, fear, hopelessness, and despair as distressing and preventable experiences. I have patients who tell me that having panic attacks, anxiety, or profound depression is more painful to them than their pain from the cancer. Good palliative care must seek to relieve distressing psychological symptoms, as well as physical symptoms.

So, on the clinical side, I was struggling with how to work psychotherapeutically with patients who had reached a point of despair. And in the research component of my work, I was investigating empirically to try to understand what were some of the associated factors. Both areas of work informed an understanding of what goes on in patients who are so despondent as they approach death that they can't bear going on, and want it all to end. Things like depression, hopelessness, and loss of meaning became very important issues to us.

As our research progressed, we found that depression was a very important factor, but other factors, such as hopelessness and loss of meaning, were equally important. As medical psychiatrists, however, we didn't have a convenient drug therapy to treat those factors.

Depression vs. Hopelessness

How have you distinguished between depression and hopelessness?

It's often difficult to distinguish between depression and hopelessness, because they do actually often overlap. When I talk about depression, I'm talking about a clinical diagnosis of a major depressive syndrome, according to the DSM IV criteria.⁷ A few of the most important symptoms of depression include persistent depressed mood most of the time for a period of two weeks or more, appetite and sleep disturbance, and decreased energy and attention. However, we often emphasize such symptoms as worthlessness, guilt, preoccupation with thoughts of death, suicidal ideation, as well as hopelessness. Those patients who meet a diagnosis of major depressive syndrome may or may not have hopelessness as a prominent symptom of depression. In our research with terminally ill patients with cancer and AIDS, a significant percentage of patients scored highly on the Beck Hopelessness Scale,^8,9 but did not meet criteria for a clinical diagnosis of major depression. In our study, scoring highly on this hopelessness scale in the absence of a clinical diagnosis of depression was a very important predictor of desire for hastened death. The scale was developed by Beck to assess hopelessness in a physically healthy, psychiatrically ill population of depressed patients, and his early works suggested that hopelessness linked depression to suicidal ideation.¹⁰ However, the scale is somewhat imperfect when applied to a terminally ill population. For instance, some items don't make sense, such as, "How do you think things are going to go over the next ten years?" Although our research findings using the Beck Hopelessness Scale are rather robust, having recognized its limitations for use with patients near the end of life, we've recently submitted a grant to the NIH to develop a scale to measure hopelessness in the terminally ill.

Despair at the End of Life

Conceptually, how are you linking hopelessness to loss of meaning?

We think there is a relationship between loss of meaning and a variety of constructs, e.g., depression, hopelessness, desire for hastened death, and suicidal ideation. In our research, we had focused on desire for hastened death as a specific outcome for which to identify predictors. But we've now begun to think about a larger construct, which we call "despair at the end of life." We think this construct includes several components, such as desire for hastened death, demoralization, loss of dignity, loss of meaning, and suicidal ideation. In our current model, we also might include such things as concern about being a burden, guilt, or even boredom or financial concerns. And I'm sure there are other components that we haven't even thought of yet. It's a model that needs to be developed further, but at this point, we're starting to see some of the things that we've been focusing on more discreetly as being components of this larger, more global concept of despair at the end of life. Several people across the country and around the world are looking at some of the individual components of despair at the end of life. At Memorial Sloan-Kettering, my colleagues and I have been looking at the desire for hastened death and hopelessness and loss of meaning. Harvey Chochinov in Canada has been looking at dignity.¹¹ David Kissane in Melbourne, Australia has been looking at demoralization.^12,13

In some of the studies in which we've looked at depression and hopelessness in relation to suicidal ideation and desire for hastened death.¹⁴ we have data on how spiritual well-being correlates with those constructs. To measure spiritual well-being, we have been using David Cella's FACIT spiritual well-being scale, which has two subscales, one that measures faith (how much belief in God and degree of religious practice), and the other is a subscale of meaning and peace/contentment.¹⁵ It turns out that spiritual well-being, in particular loss of meaning, is more highly correlated to that whole constellation of constructs that make up despair at the end of life than depression alone or hopelessness alone. So, we believe that if one manipulates this sense of meaning and spiritual well-being, one can have a beneficial effect on the whole construct of despair at the end of life.

Learning from Viktor Frankl

While my research was continuing about the relationship between desire for hastened death and depression, hopelessness, spiritual well-being, and other factors involved in despair at the end of life, I became a Project on Death in America faculty scholar. In 1996, I had been to a couple of retreats with my fellow faculty scholars and started to hear people talk about a group of philosophers and thinkers, whom I had never really read or understood. One of these writers was a psychiatrist named Viktor Frankl. I started to read Frankl's work because it seemed relevant to caring for a dying patient. In Man's Search For Meaning, Frankl describes his own survival in a concentration camp and then he uses that experience to ground his ideas about the importance of meaning as a basic drive in human psychology—the need to find a sense of meaning, purpose, and value in life.¹⁶ Frankl asserts that this need for meaning makes up a spiritual component of the human experience: we are mind, body, and spirit, and so sustaining a sense of meaning in a person's life allows for a sense of well-being, peace, and contentment and facilitates a self-transcendence and a sense of connectedness with others and that which is greater than oneself. Whereas Frankl's work wasn't necessarily directed toward the treatment of cancer patients, I started to see some of his writings about meaning as being very relevant to the patients whom I saw, particularly those who had this desire for hastened death. Those were the patients who knew they were going to die and the cancer had robbed them of many of the usual sources of meaning in their lives, such that they would say, "Why live? I'd rather just die right now. I see no meaning or value in continuing to live until I die naturally."

And, so, when I combined this clinical experience with patients with what I was reading in Frankl, I was struck by the thought of adapting his ideas to our work with cancer patients. I then began developing a strategy for using some of the principles of Frankl's work on meaning as part of a psychotherapy for cancer patients. Although we didn't have a medication or a drug to treat hopelessness or loss of meaning, I had stumbled across an approach that I thought could help people sustain a sense of meaning and purpose, and thus help them deal with related issues like hopelessness and depression.

Designing an Eight-Week Course of Meaning-Centered Psychotherapy

Please describe how you designed this intervention and what its main components are.

In 2000, Mindy Greenstein, PhD, a fellow working with me at the time, and I developed an eight-week manual to conduct this kind of psychotherapy over the course of a year. We piloted it with a group of patients with advanced cancer, with the goal of helping patients to identify multiple sources of meaning that still existed in their lives, and to teach them a fluid and flexible way to think about those sources of meaning.¹⁷ So, if patients were blocked in terms of one common source of meaning, for example, their work that was no longer available to them, they could switch to other sources of meaning, such as spending time with their family or being connected to art and music, or spending time in nature.

In developing the manual, Dr. Greenstein and I initially sat down and inundated ourselves in Viktor Frankl's work. We wrote out a synopsis of all the issues and concepts that we thought were most relevant and applicable to patients with cancer. Then, we designed eight sessions, in which we tried to deal with most of these important concepts. We scripted out what we thought each session might consist of.

We decided that the sessions should be different from a support group, because what we wanted to do was convey information, sort of like a mini-course on Frankl. But we also wanted people to have an experience. It was almost more a learning experience than it was a psychotherapy experience. We wanted to provide a group psychotherapy experience that did not rely primarily on expressing emotions or developing a support network, but rather one that facilitated participants' learning experiences around several concepts relating to meaning through experiential exercises in a group setting. Emotions usually get expressed and support is experienced among group members, but the format and the emphasis is quite different from the traditional cancer support group or the most common types of cancer groups that are often described as "Supportive-Expressive" groups. We had learned from the work of others that learning takes place more effectively when it is connected with a profound, emotional experience.

So, we wanted to combine whatever didactic, conceptual elements we had in each of the sessions with one or two experiential exercises that illustrated or was able to convey the concepts. For example, some of the early exercises involved making a list of the three things that give your life a sense of meaning and purpose. Another exercise asked patients, "Now that you have cancer, how has cancer changed what's meaningful in your life?" What usually turns out is that things that were originally meaningful in one's life are still very meaningful, which is an interesting observation to point out to patients. Then, we talk about various sources of meaning in life, such as work, love, creativity, responsibility, deeds, nature, art, and humor. In one exercise in which we talk about responsibilities, we ask patients to name three things, people, or organizations or whatever for which they are responsible. That is a very compelling exercise. We asked patients to make a list of three things that are beautiful. We asked them, even though they have cancer, what are the three or four things that still make them laugh?

One of the important aspects of meaning is that it exists within a historical context. So, we spent two sessions talking about meaning within the historical context of the patients' lives. We asked people to tell us the story of their lives, and began that process by asking, "Tell us the story of your name." One of the homework assignments was to tell the story of your life, or tell the story of your name to somebody in your family or somebody whom you think would want to hear it. We also encouraged a so-called legacy project for people to think about what they would like to leave behind in terms of messages about the story of their family, or their advice to people left behind.

Midway during the eight weeks, there's a session in which we talk about limitations and the fact that the group is going to end in another four weeks now. We ask patients to talk about what they imagine a good death would be like, where they want to be buried, and things like that. Then, at the end of the eight-week course, there's a wrap-up and a discussion of what patients have learned. We ask them, "What are your hopes for the future at this point?" That's always very profound, because here are people who have got anywhere from a month to four months of life left. What's really interesting is that at the end of the eight weeks, no one has ever said, "I am dying and there's no hope for anything. What can I hope for?" That's almost never come up. People have an incredible number of very important hopes when they are facing death: they hope not to die alone; they hope not to suffer; they hope not to have pain. They hope to be able to live whatever time they have left with meaning and joy and purpose. They hope not to be a burden to others. They hope to be remembered.

What's really striking about this is that clinicians often assume: if I can't tell patient they're going to be cured, then they will have no hopes whatsoever, and there's nothing that I can do to help sustain hope. But our experience with the patients in our study has shown us that when hope for a cure is lost, there are still so many critically important hopes that remain. We have to be more aware of that, so that we can help patients to understand and sustain these hopes.

Patient Experience

What is the experience like for patients going through an eight-week course together?

I think it's a difficult process. I think in the beginning, patients are somewhat frightened. Some people don't like to think of themselves as having advanced cancer and dying. Often, a couple of people will say, "Oh, I'm not dying." Yet, we know the issue of dying will come up in week four or five, when we'll talk about the finiteness of life and what do you think is a good death, and so forth. Some people get frightened at this point. They see other people who are sicker, and they are afraid that this might be too disturbing for them. But usually when patients stick with these sessions, they find that they enter into a more profound way of thinking about their lives and their mortality. They find themselves focusing on connectedness, not just with the other members of the group, but with other people in their lives, and they recognize that this connectedness is critically important. For some people, this also involves a connectedness with something greater than themselves. My understanding here is based on what I have observed running the groups as well as on feedback from participants and some of the early analysis of our data.

Spiritual Well-Being

I often worry that people may perceive this intervention as having a religious focus, but we don't talk a lot about faith and God. We do talk about meaning, spirituality, transcendence, and being connected with something greater than oneself. For some people, these ideas are expressed in a religious context, because that is what makes sense to them, but the vast majority of the people in the groups we have conducted to date don't see it as religious, and they don't want particularly to see it as religious. This might be a geographically and culturally-situated phenomenon, more likely to be encountered in New York City than elsewhere in the country or the world. The intervention has the flexibility to be used either way: with people who are not particularly religious or who don't believe in God, as well as with those who do.

One of the things I wanted to show with this kind of work is that the spiritual domain of well-being for terminally ill patients is not exclusively the domain of the clergy, that this is a legitimate domain of interest and provision of care by traditional medical and mental health care providers. Spirituality and spiritual well-being are existential, philosophical, psychological issues. Of course, for religious people, the hospital clergy are available to discuss religious issues with them. But I wanted to make a point that the language of this kind of therapy was non-religious, that it could be acceptable to patients who weren't religious, and it could be seen as a legitimate arena for interest by palliative care physicians, nurses, social workers, psychologists, and psychiatrists, who didn't define themselves as being religious. This kind of therapy is in the realm of psychological counseling and support, as opposed to religious communication or proselytizing. I very intentionally did not involve hospital chaplains in the intervention in order to make it more universally acceptable.

Developing a Control Group

What does the supportive psychotherapy intervention consist of?

After developing the manual for the meaning-centered psychotherapy, we developed a structured manual for an eight-week supportive psychotherapy group, so as to have a control group with which to compare our intervention strategy. These groups are led by a separate set of therapists than those who lead the meaning-centered groups. Each support session focuses on a topic of relevance to cancer patients, such as how to communicate with your doctor, how to talk with your family about cancer, how to get information about treatment and side effects, how to deal with side effects from treatments and chemotherapy, what resources are there in the community. We try to steer the discussion away from a focus on meaning or spiritual well-being, although these topics may spontaneously arise in the groups. Whereas in the meaning-centered groups, we try to elicit and elaborate material related to meaning, when this kind of material is expressed by patients in the support groups, we basically go, "uh-huh." We don't really push to elaborate it. However, if people are distressed we will often make a referral for individual therapy. In fact, in both types of group therapy, we don't exclude people who are in other kinds of treatment; most of the patients in the groups to date have been in individual treatment. However, we try to screen out people who are so psychiatrically disturbed that they would disrupt the group.

Patient Recruitment

What patients are eligible for the study and how do you recruit them?

The patients all have advanced solid tumor cancers, and a prognosis of six months or less to live. Some patients are a little sicker than others, but all are ambulatory. One of the inclusion criteria is having a Karnofsky performance test score greater than 60, which gives you a pretty good indication that they will be able to make it to the group sessions for eight weeks in a row. During the course of the eight-week intervention, some patients miss a session or two, because they've received chemotherapy and got sick and couldn't come. But most patients are in good enough shape to come. Nevertheless, it's a difficult population to get to attend a weekly session.

Our goal is to enroll a total of 120 patients in the study, half in each group. Patients are randomly assigned to either a meaning-centered or a supportive psychotherapy group. So far, we have conducted six groups to date, four meaning-centered psychotherapy groups and two support groups, with a total of 36 people. The patients range in age from 36 to 82, with an average age of 60 years.

The groups take place at the Memorial Sloan-Kettering Counseling Center, which is our ambulatory, psychiatric care ambulatory clinic, where we have very nice rooms for group meetings. Most of the groups have been on Tuesdays and Wednesdays, one in the morning and one in the late afternoon or evening. We've been running two to three groups at any given time and so right now, we have a meaning-centered group stopping, a support group that's got two more weeks on it, a support group that's about halfway through, and we're starting another support group.

Although we have not made a conscious effort to enroll equal numbers of men and women, we have had even numbers of each gender. This might be because the men haven't turned us down because they find the process interesting. In contrast, most other psychotherapy group studies have been done with women, particularly breast cancer patients, and most psychotherapy groups have more women than men in them.

Have you encountered any barriers or resistance among your colleagues to referring people to your groups?

It's very hard to get people to refer, in general, to any kind of psychotherapy. I think that we have a couple of problems. One is that there are lots of free, group psychotherapy resources available in New York City and at Memorial Sloan-Kettering; these tend to be social work-run groups that are free of charge and don't ask anyone to fill out forms for research. So, there are lots of alternative ways for patients to get this kind of help.

Our groups are free of charge, too, but we're doing research so patients often have to deal with the issue of "Am I going to be in the meaning group or am I going to be in the other group?" We recruit eight or ten patients and then when we have a group, we randomize it as the meaning-centered group or the support group. So, one of the things you have to be careful about in describing the study to prospective patient participants is to not sound so enthusiastic about the meaning group that people don't want to be in the support group. In fact, on our study recruitment posters, we don't call the intervention meaning-centered "psychotherapy" because that might deter patient participation. The poster says, "Are you having difficulty coping with cancer? Has cancer affected your sense of meaning and purpose in life? If so, you may be eligible to participate in a research project entitled ‘Meaning-centered Intervention for Cancer Patients'."

Many of the referrals we do get are from the psychiatry group, in general, as well as from some of the oncologists and social workers in the hospital. Very recently, we opened up the protocol to include non-Memorial Sloan-Kettering patients who are getting treated in other places. We've also sent materials to colleagues in other centers in New York City and they posted flyers for the study and we're starting to get referrals from them. But it is challenging and it takes an enormous effort to recruit. It's not often the primary thing on the oncologist's mind to think of referring somebody to a psychotherapy research intervention. These oncologists have eight or ten protocols of their own for which they're trying to recruit patients. So, it's a challenge in a research setting to recruit patients for research because of the multiple competing protocols. You'll have patients say, "I don't know; I'm already on five protocols. You think I should do this, too?" You've got to really make a concentrated effort to recruit your colleagues' interest because they won't think about your research needs spontaneously. Patient recruitment is a hands-on process, talking to doctors, and trying to catch patients in various clinics when they're seeing the doctor.

Meaning and Quality of Life

Frankl talked about the tragic triad or the existential facts of life: pain, suffering, and guilt. When you have cancer and you're 22 years old, you are confronted with these existential facts of life prematurely. Even when you've got cancer at age 55, it still may be a little premature. When cancer starts to take its toll on your physical and cognitive abilities, your ability to work, and your sense of who you are, several things can happen. You can have a profound loss of a sense of meaning, and those, I think, are the patients whom I see who want to die. These patients see no value and meaning in going on living for another month or two. Or, for some rare individuals, the cancer experience can actually enhance their sense of meaning in life. It can change their priorities and they value life even more. For example, a person might think, now that I have prostate cancer I finally understand that spending 15 hours a day at the office is not really the way I want to live my life. But being with my spouse and kids, spending time with my grandchildren, whatever, that's what life is really all about. For some people it may not change their priorities, i.e., what is most meaningful may have always been family and relationships, but this finite timeline further clarifies and intensifies the value of these priorities. One of our goals is to give people these resources to help them sustain their sense of meaning or even enhance it.

Evaluation of Impact

How are you evaluating the impact of the intervention?

For both kinds of groups, we're assessing patients using the FACIT scale at the time of recruitment, actually within a week or two of starting the group. We assess them just before the first session, after the last session, and then again, three months later. The assessment is made up of socio-demographic and medical variables, including their condition and stage of disease, and medications and other treatments. But the most important variables we're looking at are social support; psychological distress, including severity of depressive symptoms; physical symptoms; overall quality of life;¹⁸ desire for hastened death; hopelessness; and spiritual well-being. Those are the main outcomes we're measuring.

Our preliminary findings, looking at scores at the beginning and at the end of the therapy, show that in both the meaning-centered groups and the support groups, patients have less psychological distress, less depression, and more social support. I think we expected to see that kind of impact from both kinds of interventions. But what we're seeing in the meaning-centered group is an enhancement in spiritual well-being and a sense of meaning to a significantly greater degree than in the support group. And we're seeing less hopelessness and less desire for death in the meaning-centered group than in the support group. But the numbers are small at this point. I'm going to be presenting some of the findings in late November 2002 at the Academy of Hospice and Palliative Medicine meeting in Tucson, Arizona. Even at that meeting, however, I don't think I'll have enough data for people to say, "Wow, this intervention definitely works." It will be another year before I will be able to demonstrate that, in fact, the meaning-centered intervention has some unique advantages over a standard support group; but I already have the sense that it is a very valuable intervention.

An Approach that Appeals to Men

One of the things that I found unique about the meaning-centered intervention is that men seem to like it very much. The men in the groups have been really enthusiastic about it and they've been terrific in it. In my experience, men don't like to go to touchy-feely psychotherapy groups in which they have to talk about their feelings, but they do find it appealing to talk about meaning in life. They also relate to the structured nature of the groups and the experiential exercises. It's very concrete. And we're talking about profound, philosophical, heady stuff. Although lots of emotional stuff happens in the groups, and they do talk about their feelings, the tone is not confessional. So, men seem to like this kind of therapy and to be interested in it, too. In fact, we did a survey of prostate cancer patients who go to Us, Too, an advocacy organization for men with prostate cancer. The survey found that 80 percent of the respondents were interested in going to a group that talked about meaning as opposed to a "psychotherapy group."

Lessons Learned and Future Plans

Do you foresee that this intervention will become part of a comprehensive approach to palliative care?

At this point it's basically a research study, so it's not yet integrated into standard care for the Pain and Palliative Care Service. My hope is that if we're able to demonstrate that it has some efficacy and advantage, we can then stop doing the research part of it and provide it as a clinical service within the set of services that are provided now. Those services currently include pain and symptom management, psychiatric consultation, and a bereavement program; we also involve clergy and chapels. I run some support groups for the pain and palliative care fellows. In addition, we have a core course on psychosocial issues in cancer care for the psychiatry fellows, which the pain and palliative care fellows also attend.

Applying the Model More Broadly

One of the things I'm learning is that this kind of meaning-centered psychotherapy can be applied to patients with earlier stage disease, and in lots of other populations. We could use it with patients with prostate cancer, AIDS, or breast cancer. We've even been thinking about adapting the intervention and applying it to health care providers. We've been thinking about adapting it for parents whose children have cancer. So, potentially, the model has many different applications.

I think we have some feasibility issues in terms of applying it to the population that's seen by the Pain and Palliative Care Service. The patients now participating in this meaning-centered study have got advanced cancer, but they don't necessarily represent the bulk of patients who are seen as outpatients by the Pain and Palliative Care Service or who are in the inpatient beds, for instance. Those are much sicker patients. To address the needs of this group, we want to develop a brief, individual format—a three-session version of the meaning-centered intervention that can be done at the bedside by nurse clinicians or palliative care practitioners. In addition, in the next year we are hoping to do a collaborative multi-centered study with Harvey Chochinov using his dignity-conserving intervention. I am referring to his Dignity Psychotherapy Question Protocol, which is a brief bedside intervention, in which patients answer the questions on tape, it is transcribed, edited and given back to them.¹⁰ I believe that the availability of this kind of intervention will be an extraordinarily valuable clinical tool for palliative care practitioners in assisting dying patients with existential issues such as despair at the end of life. And in February 2003, we're going to submit another grant using the meaning-centered psychotherapy in a specific population. I've been interested in trying it with patients suffering from prostate cancer.

What are the current "burning questions" that have emerged from your research on meaning-centered care?

I'm currently making a transition in my thinking as a psychiatrist who does research on palliative care from focusing on psychiatric disorders, like delirium, depression, and anxiety, and symptoms that have psychiatric components, like fatigue and pain, to overarching constructs that don't necessarily fit into a specific psychiatric diagnostic category. I am trying to deal with existential issues—hopelessness, loss of meaning, dignity, suffering, demoralization—that transcend medical and psychiatric terminology, but are obviously important for the emotional well-being of patients who are dying. We need to find ways to understand these constructs and measure them better in terminally ill populations. In this way, when we start to apply interventions like the one that we're doing with meaning and the one that Harvey Chochinov is doing with dignity, we will have better outcome measures to assess the efficacy of these treatments.

As a result of our earlier research, we wanted to know what happens to desire for death when you treat depression. Something similar is now being suggested by what we are learning about these other issues—what happens to desire for hastened death when you start manipulating patients' sources of meaning or spiritual well-being?

Spirituality, for example, can be a source of strength and comfort, but it can also be a source of distress and despair, if a person feels forsaken or punished by God. So, I'm collaborating with a young psychologist named Anne Marie Yalli, who developed a very interesting tool that looks at both the upside and the downside of spirituality or spiritual beliefs.

The negative consequences of examining one's spiritual or existential state and meaning-making have not come up too frequently in our groups. What's come up more frequently is the absence of meaning, the sense that there is nothing that people can grasp onto that's meaningful in their lives. Then, the group can be very helpful to someone who is expressing that kind of loss of meaning. It's really incredible how people rally and say, "Oh, come on, you told us last week about that thing that mattered," or "You're so helpful to me; that's meaningful," and so forth.

We audiotape these sessions primarily for monitoring adherence to the protocol. But the audiotapes also provide an incredibly rich record of the groups' discussions. Some of the things that people have said are so profound and wise.

What advice would you give others who might want to undertake a similar intervention?

There are a couple of lessons. One is that everything takes about three times longer than you thought it would!

Don't be shy about asking for help. Reach out and submit grants for funding because you're going to need money to implement these ideas. Of all the research that I've ever done, and I've been blessed to have had several funded grants to do various studies, this process has been especially creative and satisfying for me. To take the experience of being influenced by someone's ideas, which weren't particularly developed for dealing with the problems I deal with, and then adapt them to the problems that I deal with has been very exciting. When you find something relevant and adaptable to what you're doing, and you have that feeling of excitement about it, you've got to listen to that voice in your head that says, "Wow! This is fantastic." And then you have to have the persistence, stamina, and courage to see it through because it's going to be very rewarding.

References

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