Disclosing HIV Status to Patients: An HIV Positive Therapist Responds
One of the most significant issues for each psychotherapist is how to make the most disciplined use of self while remaining empathically connected to the patient. The literature is full of discussions about how not to allow the therapist's countertransference to harm the treatment. Issues of countertransference become more complicated when therapists treat patients with whom they may easily identify.
Since the onset of gay and lesbian affirmative psychotherapy the professional literature has continued to address the impact on therapy when the gay or lesbian patient knows that his or her therapist is also lesbian or gay. When both therapist and patient are dealing with virtually identical life crises at the same time the potential for therapeutic mistakes is enormous. Extraordinarily skilled therapeutic interaction is necessary between therapist and patient to avert these mistakes.
I am an openly gay psychotherapist. The majority of my patients seek treatment knowing this prior to calling me for an initial consultation. After fifteen years of practicing I was faced with a new situation, the urgency of which caused me to feel challenged professionally in ways I had never before experienced. In 1986 I decided to take the HIV test. Not surprisingly the test results showed that I had been exposed. Though my health was perfect I became more depressed than I had ever been before or since.
In late 1989 my T-Cells plunged and in 1990, on my thirty ninth birthday, I began to take AZT. The side effects of AZT left me feeling chronically sluggish, tired, cranky, and generally flu-like for several months. I no longer had seemingly endless energy, and I felt as though I had suddenly aged fifteen years. I had to learn to time my dosages to make sure that my medicine timer did not go off during a session with a patient, and I napped frequently in order to remain alert during all of my sessions.
Understandably during this period I found that I was often preoccupied with my own health concerns and fears that this was the beginning of a progression to full blown AIDS. These thoughts intruded into my consciousness while I was working with clients who had AIDS. "Is that going to be me in a few months or years" I wondered?
I began to reflect on the appropriateness of sharing my health status with patients. If shared, how could this be accomplished in a manner that was most beneficial to the patient's treatment? Discussions about this issue with both my therapist and supervisor led to the painful question "How would I know if and when I should stop practicing?" I began to grapple with these complimentary issues. What follows are some case examples that illustrate the challenges inherent in attempting to provide competent treatment while living and practicing under the shadows of HIV/AIDS.
A Patient's Anxiety About His Therapist's Health
The following case illustrates how the HIV status of the therapist can emerge as an important clinical issue. When I injured one of my hands, and had to go to the emergency room, I had to cancel several patients' sessions. One of my partners telephoned the patients scheduled and told them that I had an emergency and would phone them later to reschedule the appointment.
One of the men I was scheduled to see was Lawrence, a thirty two year old referred to me by his AA sponsor. Lawrence's last two therapists had both died of AIDS within two years of each other. Lawrence is sero-negative and in addition to wanting to work through his feelings about the deaths of his previous therapists, he wanted to explore his own fears of intimacy with other men that were making it difficult for him to form romantic relationships.
I telephoned Lawrence that evening and left a message on his answering machine offering him a choice of times to reschedule the session the following day. Knowing that his last two therapists had both died of AIDS, I assumed that he might have been made anxious by the phone call cancelling our session. With this in mind, I felt it was important that Lawrence either speak with me in person or hear my voice on his machine rescheduling the appointment I had to cancel.
When I saw Lawrence the next day, my hand was bandaged and my arm was in a sling. He began the session by telling me that when he received the phone call telling him that I had to cancel his appointment due to an emergency, what he heard was that I was in the emergency room. He immediately began to panic that I too had AIDS and was going to leave him. While he was telling me this I was thinking that I hoped that I didn't get sick any time soon so as not to provide one more reason why he shouldn't trust other gay men.
He went on to say that the phone call from my colleague had reawakened all the feelings he had about the deaths of his previous therapists as well as several close friends who had also recently died. He told me that he realized that he didn't even know what my sero-status was, and felt that perhaps he was holding back from telling me everything out of the fear that I, like his last two therapists might die. He then quickly said that of course he didn't want me to get sick, but his feelings at this point mostly were about how he would be affected if I were to become permanently disabled. He then asked me how I would react if he asked me what my sero status was?
I began by telling him how glad I was that he had been able to share all of those feelings with me. I told him that at the present time I wasn't sure how I'd respond to a request from him to learn what my HIV status was. Before answering him I'd want us to spend time exploring all of his feelings, and what it would mean if I was sero-positive, and what it would mean if I was sero-negative. I also said that before I made any decision about whether to answer this question, I would spend time thinking about where we were in his treatment. I explained that I would want how I chose to respond to be in the best interest of his therapy. I then asked him how he felt hearing this response to his hypothetical question.
After thinking for a few moments he told me that he was very comfortable with my response and it made him feel well taken care of by me. He had been afraid that I wouldn't tell him my HIV status because of my concerns about confidentiality. He then said that he wasn't even sure that he really would want to know what my HIV status was any way. I then asked if he felt that any other incident had prompted his reaction to my emergency?
Although blocking at first, he shortly began to discuss the fact that his sponsor in AA had moved away from New York two weeks ago. This man had been instrumental in Lawrence's getting sober, and they had become close friends. He said that a few nights earlier he had heard himself sharing in an AA meeting that his sponsor had moved away from New York two weeks ago. We then proceeded to discuss his feelings about this, something he had been having difficulty doing in previous sessions.
While I feel that I handled this session with sensitivity towards Lawrence's feelings, this was a difficult session for me, because it raised some anxieties and questions upon which I had not previously spent much time reflecting. Suppose that Lawrence had insisted upon knowing my HIV status. Did he have a right to know this information? What if he refused to continue treatment with an HIV positive therapist? This would not have been paranoia, a simple avoidance of intimacy, resistance to treatment on his part. This session precipitated my worries about who would want to begin long term therapy with a sero-positive therapist. Would I have to limit my practice to AIDS related cases? This is not something I want to do.
Because Lawrence works for one of the gay and lesbian social service agencies in Manhattan, we had already discussed his feelings about his co-workers, who were friends, and colleagues of mine, talking to him about me. After this session I began to think about the consequences of Lawrence discovering my HIV status from someone other than me, and how I would handle this situation clinically.
The Therapist's Own Narcissism
When I tune my patient out during his session, my own narcissistic injuries are being triggered, and I regress to a less developed way of being. I am not able to put aside my own reactions in order to be present for my patient, encouraging him to share his feelings. In part, I would rather not have to listen to his feelings, since they are so similar to the ones against which I struggle to defend myself against. An incident occurred that illustrates the impact of these issues upon another therapist's practice.
A colleague of mine, whom I will call Todd had been in practice for over ten years. He was an intelligent and committed therapist whose patients who were all gay men. He developed Kaposi Sarcoma and lost weight over a two year period before spending a month in the hospital for an AIDS related condition. He then resumed seeing patients.
When Todd returned to work he told all of his patients that he had AIDS and asked them if they wished to continue working with him. Shortly before he told me this he mentioned that he was now so short of breath that he was winded by the few steps he had to walk to let patients into his apartment. It was obvious to me that he was quickly approaching death. He told me that none of his patients had chosen to stop seeing him once they knew he had AIDS. In addition, since he was now collecting disability income, he had asked each of his patients to pay him in cash at reduced fees since he could not declare the income or fill out insurance forms. I became very angry when he was telling me this. Todd's decision to remain in practice under these conditions provides a clear example to me of a therapist's narcissistic needs interfering with the provision of good treatment to his patients. I asked him how he expected his patients to make the decision to leave him while he was dying. His patients obviously felt much gratitude to him for all the help he had provided to them over the years. Now, however, he was asking them to take care of him.
I felt that Todd should have told his patients that he could no longer guarantee the same quality and consistency of therapy that he had always provided. After telling them this he should have seen each of his patients for another four to six sessions to facilitate terminations and transfers to other therapists. Had he accomplished this, he would have maintained his primary commitment to the well being of his patients. His inability to maintain this commitment was a sign that his own life crisis intruded into the treatment of his patients. After a final hospitalization, Todd died. It was left to Todd's friends and grieving lover to notify his patients of his death.
The way Todd handled his illness raises several questions for me. First, was it ethical for him to continue practicing when he was so ill and clearly unable to prioritize the needs of his patients? I found his conduct unprofessional. A mutual colleague countered that Todd provided his patients with the opportunity to give something back to him and to take care of him. He asked if I was so certain that it could never be a positive therapeutic experience for any of Todd's patients to be caring for him? I remain skeptical, for it is my belief that in order for therapy to work, patients must trust that they do not need to take care of their therapist.
Should Todd have told his patients his health status earlier? I do not have any clear opinion about this. My concern is that, had he done so, it might have changed the focus of the psychotherapeutic work from the patients themselves and their issues to their concern for the therapist. Some discussion of this would certainly have been appropriate, especially if it preceded termination. Another of my questions and concerns is, at what point did Todd become unable to make astute clinical decisions about how to conduct his practice? I do not know if Todd was receiving clinical supervision, consultation, therapy or some other form of professional feedback at the time.
Sharing this story with colleagues and friends I often hear that I am being hard and unfeeling. "Why do I take the moral high ground with this friend and colleague?" On one level I do believe that it was simply unprofessional for him not to have made the painful decision to discontinue his practice. But I ask myself, when and if the time comes, will I be able to behave any more professionally? My model for handling this difficult situation is my friend and partner Luis.
A Therapist with AIDS Stops Practicing
Luis was progressively symptomatic for a year before he was first diagnosed with PCP. Although he did not seem to be in any denial about the deterioration of his health, he had not initiated any discussion to plan for a sudden medical emergency. Luis' first bout of PCP had a dramatic onset requiring that he be rushed to an emergency room from a training he was conducting on AIDS at a local hospital.
The day Luis went to the emergency room I cancelled his patients for the next two days and told them that Luis was ill. The following week I again called each of Luis' patients informing them that he was still ill and would not be working the rest of that month. I asked them if they wished to make an appointment with me to discuss their feelings about this. None of Luis' patients asked whether or not he had AIDS, and I did not volunteer this information.
When Luis returned to work two months later he told each of his patients that he had AIDS and he explored their feelings about this. He explained that with the likelihood that other medical emergencies would prevent him from guaranteeing the consistency of their treatment, he had decided to discontinue his work as a therapist. Luis worked with his clients for eight more sessions during which time he wrapped up their treatment, terminated their work together, and facilitated their transfer to another therapist.
Luis was in the midst of moving into full time private practice when he came down with PCP. He shared with me how angry he was that his dream of being a full time therapist was being denied to him just as he was reaching his professional goal. While this was a painful decision to make, he felt that it was the only responsible way to handle his practice having become so seriously ill.
While the literature contains a few articles about the illness or imminent death of the therapist (Rosner, 1986; DeWald, 1980; Abend, 1980; Chernin, 1976), literature on the therapist and patient sharing the same life-threatening condition appears to be just emerging. There are certain unique factors in this situation that may prove troublesome for the therapist and detrimental to the treatment he provides if left unaddressed. For example, how does the therapist cope with the constant reminder of his own health status and impending death when his practice is full of patients facing identical issues? The therapist's access to and utilization of clinical supervision, consultation and psychotherapy and his ability to remain self-examining during his personal crisis will largely determine whether or not he is able to continue to provide good treatment so stressful a period.
The therapist's level of acceptance of his own condition and possible death will determine how emotionally available he is to work with patients needing to discuss their struggles and feelings about the same illness. A therapist who is in a great deal of denial about his own physical condition will most likely not be able to begin discussions with patients who need help initiating discussions about their situations. If the therapist is in denial about his own illness he is certain to reenforce any denial that his patients may be experiencing, and will not be able to confront the patient's denial when it would be best to do so.
The question, "How much time do I have left before I get sick or before I die?" has a powerful influence on both the therapist and the patient. The therapist has to be able to assess if and when it is appropriate to bring the patient's thoughts and feelings about this into the open for exploration. The patient with HIV enters therapy wanting to be "healed" emotionally before he becomes too debilitated to do this difficult psychic work. The therapist feels the pressure of limited time to accomplish the healing before he, himself, gets too ill to continue working. It takes great skill to acknowledge the therapist's illness without intruding into the patient's treatment.
Much has been written about the concept of "living with AIDS," or "living with HIV." People with AIDS have felt it crucial to their own sense of empowerment not to be viewed simply as "victims" or "patients." If the therapist believes that he is living with HIV or AIDS and not dying from HIV or AIDS he is more likely to try and help patients restructure their own experience of the illness to conform to this belief system. While the above described intervention is often useful, there are people with AIDS who clearly are dying from the illness and need simply to be able to discuss their experience.
The therapist's experience of death and dying can shape his work with patients susceptible to the same illness as he. Does the therapist believe that death is the end of it all, or does he envision some kind of life following death? If the therapist is not able to understand his own beliefs and feelings surrounding death, he will not be able to initiate discussions about this with patients. A therapist's inability to discuss these issues creates a sense of secrecy or shame in the patient who may not have anyone else with whom to discuss these feelings.
One of the interesting questions is whether the countertransference issues that arise from being HIV sero-positive and doing this work are in fact any different than those every therapist faces during the course of his or her daily work. There is the potential to view the feelings and concerns of many of these patients as having an urgency that must be responded to immediately. Any tendencies the therapist has towards grandiosity can be highlighted by the apparent urgency of the impending mortality of both the patient and therapist. Even if the urgency does stem from the patient, is it good treatment to respond to and thus validate a patient's urgency rather than explore it? Does the fact that the issues being explored, defended against, denied or acted out are connected to the patient's and therapist's responses to illness and mortality justify conducting the treatment any differently than if the presenting problem were different?
Guntrip (1969), said that the therapist needs to know from his own experience what the patient is experiencing. Yet the potential for the therapist to make clinical mistakes is enormous when he or she is simultaneously experiencing many of the identical situations and feelings as the patient. I have learned that just because my patients are experiencing very similar situations to the ones that I am living through, I cannot assume that they will or should react in the same ways that I do.
I used to confront a patient's defenses quicker and push him more if he was symptomatic with HIV disease than I would have if I felt I had more time to work with him. When I explored this in supervision I realized that this came from my need to feel that something tangible was occurring during the treatment, and not what was the soundest clinical decision for the individual patient. It became clear that it was neither fair to my patients nor good treatment not to customize the treatment to meet each particular individual's needs, defensive structures and psychodynamics. My sense of life's fragility was causing me to view my work as the contribution I'd make that might help insure my own immortality after I die.
Terminal illness usually causes individuals to regress, at least in some areas of their lives. Thus the therapist who is dying, or living with a life threatening illness has to work with patients who are regressing. Perhaps the patients' regression mirrors the therapist's own struggles with regression. I have observed that sometimes a patient's regression will serve as permission for the therapist to regress in a similar fashion.
When a person begins therapy he or she does so expecting to continue the process and relationship with the therapist until the goals for therapy have been met. In the case when the patient has a life threatening illness he must have a willingness to embark upon the therapeutic journey with the knowledge that this process could be abruptly terminated by his own death. The therapist with a life threatening illness has the obligation to evaluate realistically whether or not the issues a new patient is presenting can be worked on effectively within the uncertain amount of time he has left. Correspondingly, the therapist must be able to know when he is reaching the point of not being able to continue to practice. Thus the therapist with a terminal illness must be able to distinguish between his own narcissistic needs to deny the severity of his own condition, and his needs to continue working, and what is in the best interest of his patients. Knowing when to let go of one's career, patients and the identity that have been so significant a part of one's life, and knowing when to refer patient's to a respected colleague is difficult and yet crucial. It is a clear indication of both the personal and professional development of the therapist and of the quality of the professional assistance he is receiving. It is improper for the therapist to place the decision of whether or not to continue working together in the hands of patients. For many patients it may be impossible to place their own needs for ongoing treatment above the needs of the "helpless, dying, and beloved" therapist who has helped them so much.
So what I am left with is once again the need to bind my own anxieties during my work with patients. My increasing success with not having my own needs determine what I say or don't say during therapy has resulted in my having an increased sense of control in other areas of my life outside of work. While I acknowledge how difficult it can be for any of us, patient or therapist, to face the reality of our own death, being forced to confront this on a daily basis both in my work and personal life has helped me demystify death and dying and move these issues from the abstract into the concrete realm. I have been able to shift my focus from the inevitability of my death, which I can not control, to what I can to a considerable extent control, namely how I live and how I work. This lesson is invaluable and one that I attempt to help my patients grapple with in their own therapy, when appropriate.
Abend, S: Serious illness in the analyst: countertransference considerations, Presentation at the fall meeting of the American Psychoanalytic Association. 365-379, 1980.
Chernin, P: Illness in a therapist-loss of omnipotence, Archives of General Psychiatry, 33(11), 1327-1328, 1976.
DewWald, P: Serious illness in the analyst: transference, countertransference, and reality responses, Presented at the fall meeting of the American Psychoanalytic Association, 347- 363, 1980.
Guntrip, H: Schizoid phenomena, object relations and the self, New York:International Universities Press, 1969.
Perlman, G: The question of therapist self-disclosure in the treatment of a married gay man, in Gays, Lesbians and Their Therapists: Studies in Psychotherapy. Edited by Silverstein, C. New York, Norton, 1991, pp 201-209.
Rosner, S: The seriously ill or dying analyst and the limits of neutrality, in Psychoanalytic Psychology, 3(4), 357-371. 1986.
Published in Therapists on the Front Line: Psychotherapy With Gay Men in the Age of AIDS, edited by S. Cadwell, R. Burnham & M. Forstein, American Psychiatric Press.
© 1994 Michael Shernoff