To Disclose or Not to Disclose? Lessons From a Dying Therapist
This article is dedicated to the memory of Sharland Trotter, EdD, whose wisdom, courage, and generosity gave life to this project.
What can we learn about practicing while dying from a therapist who is terminally ill? In this article, we examine this wisdom in an interview generously given by the brilliant therapist Sharland Trotter, EdD, 3 weeks before her untimely death. In the interview, Trotter shared her experiences and insights while treating patients for 3 years between her diagnosis with metastatic colon cancer in 1994 and her passing on Thanksgiving Day 1997.
The literature on this subject focuses primarily on the question of when and to what extent a therapist diagnosed with terminal illness should disclose this fact to their patients. Contrary to the majority view in the literature at the time of her death,1-3 but in accordance with emerging views that have gradually become widely accepted,4-9 Trotter adopted a policy of maximal disclosure consistent with the patients’ needs from the moment she was diagnosed. The broader clinical implications of Trotter’s insights are discussed.
Most articles about the therapist who is terminally ill are written from the patient’s perspective. The few articles written from the therapist’s perspective mostly focus on serious illness from which the therapist ultimately recovered, with Feinsilver6 being a notable exception. Articles written from the patient’s perspective primarily focus on the patient’s reaction to the therapist’s illness. Halpert10 focuses on the analyst’s denial of their own illness, which leads to denial by the patient. He states that patients use denial in response not only to their own guilt about their aggressive wishes toward the analyst, but also to their perception that the analyst cannot tolerate awareness of their illness. Meloche11 focuses on the ways the knowledge that the therapist is dying becomes therapeutically useful in completing unfinished past mourning with the dying therapist’s help. Clark12 focuses on the ways the therapist’s illness limits their ability to use the self as part of analysis. Auxéméry13 focuses on patients’ difficulty returning to treatment after the sudden death of their therapist. Rizq14 focuses on how the therapist’s illness recalls previous losses in the patient. Gómez et al15 focus on how institutions cope with the terminal illness of one of their founders.
A major debate in this literature centers on the degree to which seriously ill or dying therapists should disclose facts about their illness to their patients. Abend1 presents the traditional case for maintaining neutrality as much as possible, and for limiting the information given to the rescheduling of sessions. He acknowledges, however, that he found it impossible to maintain such neutrality when returning from his own illness. Schwartz2 similarly advocates for the “abstinent stance” with no disclosure to the patient, relying on Freud’s own behavior. On the other hand, Rosner3 reviewed 4 cases in which ill or dying therapists withheld as much information as possible from their patients in order to maintain analytic “neutrality.” He states that the majority of patients learned about the illness regardless of how much the therapist revealed, and they reacted based on their own histories. Patients may view the analyst’s illness as threatening and unacceptable, and some will deny the illness and feel deceived, betrayed, and abandoned. Rosner argues that these case histories support openness with patients, and that fantasies—including hostile fantasies—will appear regardless of how much information the therapist divulges.
Similarly, Pizer5 argues in favor of self-disclosure as both a requirement and a component of clinical technique. Bram4 presents arguments both for and against self-disclosure, but suggests that there is an ethical duty to disclose within limits. The only previous paper by a dying therapist—Feinsilver6—also argues in favor of disclosure, which functions in dialectical interplay with fantasy. Fajardo7 distinguishes between the traditional emphasis on transference and the more recent emphasis on the therapeutic alliance, which supports self-disclosure.
The most recent essays contained in Masur9 and Pinsky8 take a balanced view of these debates. They emphasize the analyst’s defense against acknowledging their mortality and the gradual development of acceptance. They counsel a limited disclosure that varies from patient to patient. Pinsky argues for a return to Freud’s more essential, humane approach against the emphasis of later analysts on neutrality, abstinence, and termination.
An emerging perspective on disclosure is in Elliott and Ragsdale,16 which concerns mental illness in therapists. The study found that expressions of prejudice toward people with mental illnesses were common among these mental health professionals and may contribute to an inclination among therapists to reveal their mental health history selectively, if at all, on the job. When it comes to sharing with clients, therapists tended to be thoughtful and deliberate about self-disclosure, only using it when they believed it would be beneficial to the client rather than to themselves. Regardless of whether they shared with clients, most of the therapists emphasized that having direct experience with mental illness enhanced their ability to empathize with their clients, cautioning that sometimes empathy triggered their own symptoms.
An important issue that is not sufficiently discussed in the literature is how disclosure affects planning for the transfer of patients to other therapists, and the problems that arise if there is no disclosure. Hackett17 explains that the myth of the untroubled therapist18 is shattered all too soon with the unexpected news of a therapist’s death following a short illness or due to incident or accident. These kinds of unplanned terminations have been demonstrated to result in a range of damaging effects on clients, outlined in the Table.19-22
Further, Barbanel23 found that therapists who “inherit” clients whose previous therapist died often experience negative comparisons with the deceased therapist, and that therapeutic attachment is not as secure.
Because of these negative effects, Hackett17 explains, international and US codes of ethics mandate provisions for the sudden death or incapacitation of therapists and supervisors. Some organizations with such codes of ethics include the American Counseling Association,24 the American Psychological Association (APA),25 the European Association for Counselling,26 and the Irish Association for Counselling and Psychotherapy.27 However, only the APA provides tools and resources that therapists can use to deliver on this obligation.28 Practical and legal matters also arise following a therapist’s death. These include the implications of intestacy29 and demands on surviving family members to notify key individuals, as well as their duties as executor/administrator of the deceased clinician’s estate.
The Therapist’s Perspective
This interview with Trotter was conducted by the coauthors of this article in Trotter’s home while she received home hospice care. The following text is verbatim by Trotter, but it has been edited for confidentiality.
Background. I wanted to somehow get this recorded, my work over the last 3 years with patients, as I have been dying of colon cancer, metastatic colon cancer. I was diagnosed in the fall of 1994. It involved surgery to remove the offending tumor and then chemotherapy.
Relationship with supervisor. I am extremely fortunate in having had a sort of mentor, supervisor, senior consultant who really helped me in more ways than I can—well, in ways that I will try to enumerate here. First of all, he said to me, “Don’t do anything ‘til we’ve talked.” And I went to his office on a Saturday morning, the Saturday after Thanksgiving. And we went through my patient list one by one. And we discussed how much information this one needed to know, how much information that one needed to know, how I should phrase it.
Disclosure. The bottom line is that I told everyone that I was having surgery. And if they asked further, I told them as many details as they asked for, probably holding back on some details.
So that was the beginning. That began a policy in my practice, which had been an underlying assumption until then, that I was going to be very honest about this. That, without burdening my patients, I was going to answer their questions and not be equivocal. And allow them to be—to take part in this process with me. It had many unintended side effects as I sort of practiced what I would say to people. For example, “Well, have you asked about [weight loss]? Might have something to do with your diet.” I said, “Well, no, I haven’t.” He said, “Well, maybe it does, and maybe there’s a connection.” So, I would ask, and he would gently push me. Wherever I saw in the material of therapy a possibility that it was connected to my death, I would pursue it. I tried—and I think largely succeeded in—not rubbing anybody’s nose in this.
Surprisingly, only a few of my patients initially terminated. Most of them have hung in there for however many years I’ve been seeing them and these 3 years of illness.
Patients’ reactions. For each of them, I think it has meant something different. It has stirred up their own feelings of loss and abandonment, and we have talked about prior losses of theirs. It has reinforced their attachment to me in a very good way. As I began, over the last several months, to actually terminate with people formally, I asked if they thought—what they thought about this experience. What they thought about having been in therapy with somebody who is dying. Whether they thought it had been a burden or a damage to them. And every single one of them said it had been a growth experience rather than anything else.
Relationship to children. Another way that the supervisor’s insistence on the kind of straightforwardness helped me was, I realized suddenly if I were talking to my patients in this candid way, I needed to be talking to my children in an equally candid way. So, it opened the door to an ongoing series of conversations with my own children, which continues, and in which I can see their growth and their coming to terms with this in ways that I would not have anticipated.
Mistakes made. Inadvertently, I pushed it beyond where I should have pushed it. I should have terminated with people before—I mean, a month or 2 ago. Why should I have done that? Because I think in the last month it has been draining. But only [in this last month] has it been a drain on me. For the most part, it has been the opposite: It has been a boost.
I think it [became draining] only when my body made its demands and I became more tired. More physical symptoms surfaced. It was clear I was not going to get better. And at that point, something internally shifted in me where I felt [a] growing—and I think it happened first with my patients—a growing sense of detachment… I do not know the extent to which any of them felt that, and it is not a question I could ask—“Are you as detached as I am?” But no, I think it is only when the illness assumed its rightful position in this drama that I realized it was time to go—time to end the work. So, I terminated with most people at the end of August and held on to a couple of people until the middle of October, and that was too long.
I think some of it was for me. These were people that I wanted to have a particularly good termination with. I wanted to make it as good of a termination as I possibly could. We cannot always calculate time down to the second. We cannot always—we cannot dictate time. So, if I had had 20/20 [hindsight]… yeah, I would have stopped the practice sooner. I would have pushed the whole thing back a little bit so I would have more time with my family. But, how much for them, and how much for me? It was pretty much—it was pretty equal. Otherwise, I would not have done it. I have been guided throughout my career by asking myself, “Is this something you really want to do?,” then weighing the pros and cons of whatever response or nonresponses I might make. And I have no idea what I was going to say next.
Disclosure and nondisclosure. In some ways, this leads us into the whole conversation about self-disclosure and when do you self-disclose and when do you not. Are there ever any times when disclosing something personal about your own life is good for the patient? And actually, at the beginning of my illness, I read that literature. And I finally decided that I really could not do or be anything other than I am, who I am, and how I operate. So immediately it became clear to me that I could not suddenly shift gears and become the silent therapist, the blank screen, the—you know. And although I think there is something to be said for not disclosing anything of your personal life to your patients, I think there is also a great danger of disclosing too much. And disclosing without knowing consciously what this may do to the patient—what this may stir up in the patient. So, I struggled with that, and immediately it was clear to me that if I was going to err, it would be on the side of self-disclosure, not on the side of silence.
And there is the issue that you asked about: How many people wanted to know? And it is a very interesting question because some people wanted to know a lot, and some people would say, “How are you doing?” And I would say, “I’m actually doing well under the circumstances.” And they would say, “That’s good,” and then turn to their own stuff and not get into it—not get into, “Well, tell me more about what you’re experiencing.” They did not really want to know the details, and obviously I did not want to force the details down their throats.
Discomfort with disclosure. There were patients who wanted to know what I considered too much—too much clinical information. And I told them I did not think the information would help them in any way.
Relationship with prediagnosis practices. [Let’s say] I was sitting here, [amidst] a debate. People on one side argue that no self-disclosure is ever good, that there is too much risk in letting the patient know anything much about you. On the other side [are the people who argue] you [can] tell [patients] almost anything. [I see it like this]: With each patient, I try to assess, well, what is this information going to really do to and for the patient? Is this something that they really need to know? And is it a thing that they—it would not make any difference if they knew? For example, “Where am I going on vacation?” I have no problem saying, “I’m going to blah blah blah. I’m going to the beach.” “How many kids do I have? How old are they?” It would be a little hard to hide in my circumstance, since I have a husband who writes a column for the [Boston] Globe. Most of my patients know about that, and probably most of them read it or at least glance at it or at least are aware that it is there. So already they know a little bit about my personal life.
My practice is in my house, so they know a lot just taking in the circum[stances]—you know, what the house looks like. So, yeah, I struggled with self-disclosure to some extent. I think one always has to. I think you cannot make a blanket policy and have that just be your policy and never be so inflexible that it does not change, [even] if that is what seems indicated. And sometimes not telling somebody something, even if it would not really in the long range make a difference, is important.
Effects of physical illness. I canceled very few sessions, and I also made a real effort to hang on to my dignity. So, when I was feeling sick, mostly I think my patients did not notice. They rarely said if they did. Now, occasionally somebody would say, “Are you feeling sleepy?” because I would nod off. And I would say, “Yes, I am.” And apologize. By that point, it was so clear that the illness was gaining ground that it did not bear a lot of discussion. Although as we sit here, talking about it, I think I should have said, “What is this like for you, you know, sitting here with a therapist who’s falling asleep?” I did not. So that is one I missed. In some ways, I was surprised to find there was such a big debate about this in the literature.
I never needed to excuse myself. I remember one incident—and it felt like being in hell—of not knowing whether I was going to make it, willing my bowels to stay tight until the end of the session. In other cases, I canceled. I mean, if I knew it would be a huge risk, I canceled.
Patients who did not want to know. It was interesting to me. I mean, it added a dimension to a portrait of them that I was developing in my head as the therapy went on: that people were capable of sitting there and, really, talking about their problems and their issues with their girlfriends or wives or work. And there is a kind of denial about it all that I certainly fed into. I mean, I had my own level of denial. So, I would tend to reassure people that everything was going well.
To shake them up a little bit? “Hey, don’t forget. Reality check.” I remember dreading going to a session and not wanting to go through with, you know, putting on my professional mask. And almost always, the patient would draw me into their world, and I would actually feel enormously distracted from what was happening with me. So, that they really did not want to know just added a little dimension to who they were. One thing that was difficult was feeling I did not have the ability to ask, “Why are you not more interested in my cancer?” But I never figured out how to say that without sounding peculiar.
Terminations. It was bittersweet. It was very poignant. I think there was not a single person who did not cry. And as I think I said before, people mostly—no, I think like 100%—said they did not feel that this had been a burden to them or damaging to them. That they had learned something about all of this, about themselves, about living and dying—about the fact that one could talk about something as taboo as death. It could in some ways help them revisit other losses without the sharp pain of remembering in some other way. That they had a concrete loss to deal with and another one to let seep in around the edges so they could deal with it more slowly and more gently.
First session after diagnosis. Yeah, I do remember, but I do not remember many of the details of that hour. But again, this is where my denial kicks in, and denial, I think in this case, served me very well. I could just put it all on hold and go into my office, close the door, be with the patient, with some relief that I was not going to say anything right now. And knowing that it was just 1 hour—I think it was just 1 hour. So, I would say that, in part, I was on automatic pilot through much of that session. But I certainly did not lose it. I went in, I did—I sat with the person for an hour and told them to have a nice weekend.
Denial. I guess that was the beginning of the formal termination that happened over the summer. I became aware in May or June that this was going to… that this was the beginning of the end. Although I had no idea how rapidly it was going to progress. Um… Push it off… So that was when my denial faded, and that was the time in which I started terminating. And I told each patient that it was clear that we had run out of treatment options—that I did not know how much longer I had, but that I was going to close my practice at the end of the summer, so we had work over the summer to make it right, I mean, to say goodbye to each other.
So, in that case, my denial again sort of guided me—or my lack of denial. The fading away of denial guided me in, “OK, what is the next clinical step here?” I think I made some mistakes. I think some patients who I saw practically until the bitter end, I held out to them some ambiguous hope that maybe it would be longer, and I think that was a mistake. Because it would have been clearer and cleaner if, earlier on, we had set a termination date and had done it, but we did not. So, there was a little bit of ambiguity at the end with these people in particular.
Trotter’s generosity, straightforwardness, and honesty offer a road map for navigating the tragic reality of the therapist’s untimely death. Trotter discusses her attempts to collect information about her patients’ perception of the course of their therapy and illuminates the important role of the therapist’s professional support system as she navigated the process of dying while working. Her unique perspective on the debate around issues of self-disclosure calls for the therapist’s engagement with a rigorous process of self-reflection governed by the age-old question of whose needs are being met in the therapy, and what is the role of the therapist’s professional life in the larger context of their identity.
Dr Avi-Yonah is a teaching associate in psychiatry at Cambridge Health Alliance, Harvard Medical School. Dr Woolley works in grief support services for Samaritans of Boston. The authors report no known conflicts of interest.
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