by Carly Gelfond
Lanie Fleischer sits behind a desk in her office wearing a blue sleeveless blouse with a green beaded necklace and blue dangly earrings. It’s her hair that you notice first: short, black, and curly, but with swathes of white here and there, like islands on a map. The second thing you notice is the kindness in her face. Lanie came to The Rockefeller University Hospital as a social worker in 1988. She is now Supervisor of the Social Service Unit, but will quickly point out that “that’s kind of a misnomer—it’s really only me.”
Carly Gelfond (CG): Oh. So you’re your own supervisor?
Lanie Fleischer (LF): I am! But in a broader sense I report to the Director of Nursing and Patient Care. And ultimately, of course, I report to the Physician-in-Chief—Dr. Barry Coller. You know, in the past, there were more people in the social work department. At that time, the research centered on inpatient studies and a therapeutic community evolved in response to their needs. We had patients who were more clinically diverse, many of whom were very, very ill. And they stayed here, not just for a short visit. I mean they really lived here. So it was a whole different ball game back then. The hospital has evolved.
CG: What changed?
LF: Well, a lot. Advances in clinical medicine with an emphasis on outpatient treatment and in lab techniques. Also, one of the laboratory heads—Dr. Martin Carter—died suddenly in 1993. And this affected the study of epidermolysis bullosa, which is a genetic skin condition that causes deformities from constant blistering. Rockefeller had been one of the sites of registry for that disease. People as young as infants were coming from all over the world with this. But when Dr. Carter died, the registry didn’t continue here. There was also another study that was being done in Dr. Zanvil Cohen’s lab, involving wasting in HIV patients and the use of thalidomide, and the immediate reason why that study ended was that Dr. Cohen died. Other things shifted, too: Dr. Jules Hirsch’s studies on diet and Dr. Mary Jeanne Kreek’s studies on addiction reached milestones.
Rather than clinical description over time, many studies became reliant on measurements that are lab-based and the data can be gotten on an outpatient basis rather than an inpatient one. Years ago, my time was much more taken up by the inpatient unit than the outpatient clinic. But now that’s completely reversed. Most of my work is in the outpatient unit.
CG: How else have your responsibilities evolved?
LF: Some of what I used to do was recruit patients for studies. But now there is staff in the Clinical Research Office doing that and it’s much more structured. So my responsibilities are now just social work. Every hospital has to have a discharge planning coordinator, somebody who’s in charge of getting people the things they need when they leave, like home care, if they can’t manage on their own. So I’m that person here, and I’m also the domestic violence coordinator.
CG: How do patients end up in the social work office?
LF: I depend on the nurses for referrals. And the investigators. But everyone who volunteers for a study gets told about the services that are available, so they can ask to see me directly.
The biggest source of referrals I have is from the HIV studies. Incidentally, that’s when the volume of outpatient visits increased dramatically: when the Aaron Diamond AIDS Research Center became associated with the RU Hospital. And Dr. Martin Markowitz came and began several HIV studies. The clinic got going in full force. A lot of those patients had recently been diagnosed and didn’t have any health insurance. They needed medical care and sometimes access to medicine, so they were a big percentage of who I saw. That’s still a main source of referrals. We also see patients who need medical follow-up due to incidental findings. Then there are patients who need counseling, for instance, those dealing with the stress of homelessness. We have an increased number of patients coming in who live in shelters. And we have more referrals of people looking for jobs than previously.
CG: Do these issues have anything to do with why people volunteer for a clinical study?
LF: Yes, they often need the money. Most people say they want to contribute to science but there’s a significant number of people who say they need the money. Some people have HIV disease and are in the study to get treatment, and there are all the patients with conditions needing treatment, for instance, psoriasis, and they, too, are coming for medical treatment. And then there are a lot of people who are here because they’re answering ads.
CG: I’m curious how a homeless person would find out about the study.
LF: Often it’s through the free newspapers—AM New York or Metro—and through word of mouth.
CG: Does someone who’s homeless go back on the street once the study is over?
LF: Well, most of the homeless people who we see are in shelters. But if they need a referral then I give them a referral to a shelter and other services and I follow their course. A number actually have insurance—they have Medicaid. Most are not in crisis.
CG: What is difficult about your job?
LF: Keeping up with the range of services available that would be beneficial to our patients. Or, the range of needs themselves, and the unpredictability of what these needs might be. Well, and another difficulty involves a phenomenon that happens to people with terminal diseases. We’ve had studies where people were terminal, and as much as they know what their situation is, there’s often a rekindling of hope. Even though they know the disease can’t be reversed, hope arises and also the anguish surrounding the original diagnosis—well, the staff has to be ready for that. The demands on us are very wide-ranging, form questions about where to go shopping in New York, to facing dire circumstances. So it’s hard for all of us.
CG: What’s the best part of your job?
LF: Oh, it’s the sense of being in and working in a reliable and functional community. Nursing is central. The team is crucial. Then the whole is greater than the sum of its parts.
CG: What is an unexpected part of your job?
LF: This interview was unexpected, I’ll tell you that! (laughs) Especially after you’ve been working here for this length of time, you just kind of feel like a fixture in a way.
CG: What is one moment that occurred on the job that you will never forget?
LF: There are a couple of things, really. One is kind of funny. Richard Galbraith, who was in Dr. Kappas’ lab, did a study involving young people with a very rare disease called Crigler-Najjar syndrome, affecting the metabolism of bilirubin, which makes you jaundiced. Anyway, there was this great kid, W—– who had to stay in the hospital and spend many hours in phototherapy each day. While he was here, he fell in love with a woman who was a patient volunteering in Dr. Mary Jeanne Kreek’s study. Many patients had to be supervised if they left the hospital premises. So we used to accompany the patients into town. One day it occurred to me that it seemed like these two would really like to go out. So I went out with them to the movies. We had a good time, but the next day I felt he was so subdued, and so I said to him, “What did you think about last night? Did you have a good time?” And he said, “Well, yes, but there was one thing that was wrong.” And I said, “What was that?” and he said, “Well, you were there.” And I thought that was so funny!
The other thing I’ll never forget had to do with B—–, who was like a hero to us. He was from rural Tennessee, and he had incredible limitations from epidermolysis bullosa, and he also had terrific emotional stamina. And he wound up moving here, with our help, because he felt that he would have a richer life in the city, and he really made a life for himself in New York. But he was susceptible to carcinomas, which led him to require amputations. Eventually he needed an arm amputation that would go above his elbows, but he didn’t want to have it. And it was hard to understand why, if his life depended on it—after all, he didn’t have a full arm at this point anyway. But it turned out that it was because of the way he wrote. He’d put an elastic band around his arm, stick the pencil into it, and that’s how he would write, and eat, close doors, etc. Ultimately he did decide he would have that last amputation. But afterward, he gave me this little note, and it said, “You see? I haven’t given up.” And I realized as I was reading it that this was the evidence that he hadn’t given up. Because he had still found a way to write this note.
And then there’s this one other thing. Can I go ahead and tell you one more thing?
LF: Another thing that I’ll never forget was kind of devastating and at the same time absolutely extraordinary. I really will never get over this—but in a way I don’t know what it is I’m getting over. What happened was that I had a friend who developed ovarian cancer. And then she developed this very rare complication that Dr. Bob Darnell was studying. It’s called paraneoplastic syndrome, a rare neurological complication from cancer. People who have this don’t usually die of the syndrome, they die of the cancer, which was true for her. I remember that when I learned that this friend was going to be seen at RU, I was just floored. It seemed like, somehow, I worked in this hospital, but it was impossible that I could be faced with knowing somebody who came here from another part of my life. It’s sort of like: you imagine all these funny demarcations in your life, and then, one day, you realize they’re not really there.