The title of the talk was Psychiatric Aspects of Palliative Care, I added the issues related to meaning and existential issues because I really had no intention to speak for forty minutes on this very broad topic of all the psychiatric aspects of palliative care. It was important for me to focus a bit on the issues of meaning and meaning-centred psychotherapy which is a novel, unique kind of intervention that we’ve developed over the last decade or so at our centre in my research group. So it was an opportunity for me to talk about meaning-focussed or meaning-centred psychotherapy.
What we discovered is… we’ve been doing a body of work over the past 25-30 years or so which began with looking at basic neuro-psychiatric problems, complications of cancer and cancer treatment. My background is I’m trained both in internal medicine and psychiatry and I went to Memorial Sloan Kettering in the mid-1980s to do a fellowship in a new field called psycho-oncology or psychiatric oncology and stayed on at the faculty there at Memorial ever since. So initially my work focussed on what you would think of as the medically oriented interactions between cancer and psychiatry, so I focussed on common neuro-psychiatric problems like delirium and other common psychiatric complications of cancer like anxiety disorders, anxiety problems, depression, delirium etc. As I got a bit more and more involved in working with patients with advanced disease I began to focus on problems that weren’t really in our Diagnostic and Statistical Manual of Psychiatric Disorders. These were what I call meta-diagnostic constructs; these were existential issues that people were suffering with – despair, suffering, loss of meaning, hopelessness, demoralisation, loss of dignity, feeling in so much despair that they wanted to have their death hastened, even requesting assisted suicide. I trained during the period of time in the mid-1980s when the AIDS epidemic really exploded and I was treating people my own age who were dying of AIDS with no treatment whatsoever and, of course, also involved with so many cancer patients, most of whom were older than me at that time but now are my age. So I encountered all of these issues that as a psychiatrist, a formally, traditionally trained psychiatrist, I had no way of understanding their problems, I had no classification system of diagnosing them or, this was then, no established treatments. So what I proceeded to do was to embark on a set of studies trying to understand those existential concerns, those meta-diagnostic constructs and try to find ways to impact on them. And the one that I focussed on in my talk today is the work we began to do on meaning and trying to find ways to enhance meaning in patients with advanced cancer.
I’ll give you a typical example of a patient that was the kind of patient that stimulated this need in me to try to understand the problem and find a treatment, an effective treatment or solution, a way to help. The typical patient, a 68 year old Asian gentleman who was a scientist himself who had advanced lung cancer and I was asked to see him for depression and coping. I walked into his room and I introduced myself, I said, “Hi, I’m Dr Breitbart. Your oncologist asked me to come by to see you, see if there’s some way I could help. They’re concerned about how you’re coping and wondering whether there was some way I might be able to be of help to you.” And he said to me, “Well Dr Breitbart, if you want to help me you’ll kill me. You’ll kill me. If you really want to help me, kill me.” And I said, “Why is that?” And he said, “I have three months to live. I see no value, reason, meaning, purpose in living for the next three months so I might as well die right now.” And this was the kind of patient that I encounter where I felt flummoxed. Now I had done research on desire for hastened death, why a patient might ask for a hastened death, might even ask for assisted suicide, and the studies that we had done up to that date showed that depression, undiagnosed, untreated depression, was an important factor in producing this kind of despair that led to desire for hastened death.
So as a psychiatrist I would normally take such a statement or a request, I don’t think it was meant as a serious request, it was a statement of his despair, I would take such a statement and I would try to assess, OK, is this patient depressed and nobody realises it, we haven’t realised it? Can I treat it? And the treatments for depression, despite the fact that someone may have cancer or even terminal cancer, if someone has clinical depression they typically do respond to anti-depressant medicines or a combination of anti-depressant medicines and psychotherapy. So is this untreated, undiagnosed depression that I can treat? In the case of this particular gentleman he wasn’t clinically depressed. He was hopeless and he had a profound loss of meaning. Up to that point, up until the point where I met him very recently, we didn’t have an intervention. How do you treat hopelessness independent of depression? How do you treat loss of meaning? These were important constructs because, in addition to depression being a predictor of desire for hastened death, what our continued research showed was that in addition to depression such things as hopelessness, loss of meaning, uncontrolled pain, severe debilitation, lack of social support, those were all very important factors that if they pile up really account for the vast majority of why a patient may desire a hastened death or even request assisted suicide.
There’s a proportion of patients, it’s a little hard to tell how many patients that makes up but I would say it’s somewhere in the range of 10-15%. These are people who don’t have depression, who aren’t feeling profoundly hopeless and worthless, that don’t have a loss of sense of meaning in their lives, who want to have control over how they live because they’ve lived their lives in ways that they’ve felt they’ve been able to control. They’ve lived their lives authentically, freely, the way… they’ve lived free lives, in other words lives in which they’ve been able to authentically express who they are, and they want to have that same kind of death. That’s exemplified in the US by states like Oregon, Washington, where the citizens of those states have voted to legalise that in that state and I think that comes out of two factors, one, the idea to try to have control over one’s death, just the way we have control over our lives. The other aspect of it is just the fact of the choice, having the choice, allows people to adapt and feel less frightened about becoming trapped in a circumstance that there is no escape from. I think that’s another element of it.
But here we had a clinical problem of loss of meaning, loss of hope, and I had no medication to use. So we looked high and low and thought quite a bit about how we might develop an intervention to help enhance patients’ sense of meaning and hope. While we were doing that we did a variety of studies looking at how does loss of meaning impact on patients. What we found was that if you have a profound sense of loss of meaning or, in other words, if that meaning, the ability to sustain a sense that one’s life has meaning and value and purpose, that that buffers against hopelessness, depression, depressive symptom severity, suicidal ideation, desire for hastened death. It also allows patients to endorse a higher quality of life despite having physical symptoms like pain or fatigue. So we knew that being able to sustain meaning could have benefits to patients as well. So we actually turned to the work of Viktor Frankl, who was a Viennese psychiatrist who came a bit after Freud, and was an interesting figure, a psychiatrist and philosopher. I began to inundate myself in his work which focussed on his ideas about the importance of meaning, the fact that a meaning is a basic motivating force of human behaviour and that there are a number of predictable sources of meaning in human existence.
How did you apply this to therapy?
I’m an academician, I’m a clinical scientist, a clinical researcher, I approach things very methodically and empirically but this was not a good example, developing meaning-centred psychotherapy was not a good example of an empirical approach. What we basically did is sat down, one of my Fellows, Mindy Greenstein, and I sat down in a room and we met every week and we decided… basically, we looked at all the literature on psychotherapy trials that existed in the mid-90s, late 90s, early 2000. At that point most psychotherapy had been done with women with breast cancer and there were several models. One was David Spiegel’s supportive expressive psychotherapy, which is a group psychotherapy for women with metastatic breast cancer. That was a year long and we had no interest in doing a year long therapy for patients who were terminally ill. So we decided that wasn’t a particularly good model. There were some models of psychotherapy that were eight to twelve sessions, we thought that was reasonable, let’s do something eight or twelve sessions long.
There are some models of psychotherapy that were psycho-educational as well as experiential, work by Fawzy and Fawzy at UCLA working with melanoma patients. That was kind of interesting because we did want to impart several things: we wanted to highlight for patients the fact that meaning was important to them in dealing with cancer, especially with dealing with the finiteness of life. We also wanted to impart to them information about the sources of meaning so that they could reach for each source of meaning. We wanted to raise in their consciousness an awareness, a more conscious awareness, of the importance of meaning and of the sources of meaning in life so that they could utilise that information and use it to adapt and cope with what they were dealing with. Most of us go through life living meaningful lives and we do this without any intentionality, we just do it naturally. But when you’re overwhelmed it’s helpful to raise this to consciousness. So we just decided we’d do an eight to twelve week intervention; we knew we needed a first session and a last session. We knew we wanted to have four sessions that focussed on each source of meaning and so we knew we had about six sessions and we probably needed a session to link our first session, introducing the concept of meaning to cancer, so we had a linking session focussing on cancer and meaning. That’s how we developed it and then we ran a bunch of pilot studies and then applied for funding. We’ve done now four randomised controlled trials, two formats – we’ve developed the meaning-centred psychotherapy in a group format. That has its problems in the sense of when you’re dealing with advanced cancer patients it’s hard to get them to come every week at the same time, etc., there’s a lot of attrition due to illness and things like that. So we developed an individual format to make it much more flexible. The group format has some advantages in that there is power, there’s something magical that goes on, in a group. The group process is very supportive for patients. The individual format allows for more flexibility but more intensive work. We’ve been very fortunate enough to show that this intervention, which combines some didactic component along with experiential exercises to help patients learn more viscerally what we mean by meaning, how to access sources of meaning, what we mean by these sources of meaning and how they can reach for them and utilise them, it seems to be quite effective in reducing anxiety, depression, hopelessness, desire for death, improves quality of life, reduces symptom distress and the mechanism is through enhancement of meaning.
What is the role of this model in assisted suicide?
I think that the idea of assisted suicide is a controversial one and I’ve been gathering research on that area of what leads a patient to desire hastened death, what leads a patient to request assisted suicide. I've been doing research on that for close to two decades and all of the studies, cumulative study data from those studies, suggest that depression, hopelessness, loss of meaning etc. are very important components that lead to the kind of despair that results in a request for assisted suicide. So I think that when a clinician has a patient who requests such assistance or when the electorate or the legal system or the court system looks at this question, I think what’s important for them to understand, for people to understand, is that there’s a basis of science and research, clinical research, that suggests that these are a group of patients very often who are in a great deal of despair. We have treatments for pain, if someone is in uncontrolled pain and they ask for assisted suicide we give them pain medicines, we know how to reduce their pain. When they’re not in pain they don’t want assisted suicide generally. We’ve done studies showing that if someone is depressed, has a clinical depression and they have desire for hastened death if you successfully treat the depression they no longer want desire for hastened death. What we had up until this meaning-centred psychotherapy and a few other therapies that have developed in the past 5-10 years, dignity therapy by Harvey Chochinov for instance, what we haven’t had is a tool to intervene, to help impact positively in the lives of patients who have this sense of loss of hope and loss of meaning in life. We now have interventions that can successfully impact positively on these patients and so we have more in our palliative care armamentarium to assist and help and diminish the suffering. What we needed were more effective interventions that eliminate suffering because if you don’t have those then you’re left with very few options other than let’s eliminate the sufferer. As a society we’d prefer to be able to eliminate the suffering in general, if that was possible.