Interviewee: (Pause) Well First of All, I Have to Preface This All by Saying, Um I M Easily

Transcription #3

Interviewer: “This is Marisa, recording in the interview, April 3rd, 10:20 a.m.. So welcome. So the first question is…Please describe for me a time when you used reminiscence with a patient with HIV Disease and end of life.”

Interviewee: “(pause) Well first of all, I have to preface this all by saying, um…I’m easily taking care of 1000, over 1000 people with HIV. That’s with my personal life, my life with working with an AIDS support group down in the Cape, and working on the HIV unit, here at the Shattuck Hospital. By reminiscence, I, you know, I have a lot of hospice background, so my understanding of how it all works is to be present. And, to do whatever you have to do in order to allow the person to pass easily. And, there, um…are so many instances that come into my mind, um…We had a guy down in the Cape, who um…made a deal with us that in spring time; it was winter time and he wanted to wait until the lilacs bloomed. So as I’m taking care of him and doing an overnight, we were talking a little bit about it. And he’s telling me that from his childhood her remembered lilacs very beautifully, and that the smell of them was really wonderful, and it was something that always brought him back home no matter where he was. Wherever he was and was smelling lilacs he thought of his mom and thought of his childhood; the good stuff. And I’m gonna use Douglas, ‘cuz that’s his name; not his last name. And Douglas was in a, pretty much had drifted into a coma his last few days on this earth, and um..it was spring time. And, um…I had been taking care of him for quite awhile, and I knew how he felt about lilacs, and the lilacs were in bloom. And, we had cut them, brought them into his room, and I leaned over and whispered to Douglas that the lilacs were in bloom, and I basically had them close enough to him, for him to be able to smell them. And, um…within moments, Douglas passed away.”

Interviewer: “Oh My God”

Interviewee: “Really, it was his desire to smell the lilacs one more time before he died. You know that old saying, oh you’ve got to smell the roses. In hi case it was lilacs. Um…there’s a bunch of those things like that. I can go on and on about that. Um…do you want me to start with that?”

Interviewer: “That’s fine”

Interviewee: “Okay”

Interviewer: “Okay so this experience, what was it like for you? You can speak about this particular patient.”

Interviewee: “Very profound. Um…it’s something I experienced often with um..with a lot of the people I took care of, and um…(pause). The only other thing I want to add to this, is one other thing about another patient we had at the Shattuck. His name is Carl. And Carl um…I had been bathing him, and Carl had been a problem child up on 7th for ever and ever. He was escaping, eloping, AMA. And he, at this point, had severe peripheral neuropathy and was getting around in a wheelchair. And it was towards the end of his life and we all knew it but he was very verbal. And he was a very sassy, African American, gay man. And as I was doing his care, and I was working at that point 7-3 and I was doing his care, in bed, ‘cuz he couldn’t get up anymore to shower, and he turned around and said to me ‘George, how long do you think I have?’ And I turn back to him and said ‘Well, what are you talking about, Carl?’ He said, ‘Well, how long do you think I have before I die?’ And I said “Well you know Carl, I don’t really know’ I said ‘Um…what do you think?’ And he said um…’I don’t know, I think in three weeks.’ I said ‘three weeks’; I said ‘okay, okay, what do you want to do?’ I said ‘I know you love food. What do you want to eat?’ And he want back and thought about some food from his old Southern background and wanted some black-eyed peas, I think he wanted some collard greens, spare ribs, there was a whole bunch of things he wanted to eat. And, he turned to me and he said, I said, ‘Do you want to see any movies? Is there anything you want to see that we can bring in for you?’ And he rattled off three movies he’d always wanted to see and heard about; they were great. Never got a chance to see them. Carl was a very poor person towards the end of his life, and um…didn’t have a lot of access to a lot of money except for his checks um.. Because they came in monthly. Which he proceeded to blow on dresses and goodies. Um…Carl told me three weeks. Three weeks and a day, to the day, Carl died. And, after we had brought in all the food he wanted, showed him the movies he had wanted to see, and saw the people he had wanted to see which he hadn’t seen in quite a while, to resolve.”

Interviewer: “okay”

PART II

Interviewer: “So, what do you think the experience was like for the patient? You can talk about both of the patients.”

Interviewee: “Did we finish the one about me? How I felt about it? Were you satisfied with that?”

Interviewer: “Um…it was profound, if you want to add more, absolutely.”

Interviewee: “Yeah, okay, let’s go back to that.”

Interviewer: “Sure”

Interviewee: “You know it’s funny ‘cuz (pause) so much of what we do, we sort of shelf. And, we don’t deal with, we go through what we have to go through, to get done what we have to get done, and collectively speaking, and somewhere done the road it all comes up, and you drop your tears and have your mini breakdowns, and grieve for everybody that you’ve sort of helped pass. But for me, I think the amazing part about all of the guys that I’ve dealt with, and the women, ‘cuz there’s been a bunch of both, is um…(pause) how much they know, innately, about when they’re going to die. And about, how much, no matter what happens the most important thing is about resolving stuff in the end. And it teaches you lots of lessons about how to live your life. And that’s the end of that.”

Interviewer: “So what do you think the experience was like for the patient? Did the patient talk about what the experience of reminiscing was like for them?”

Interviewee: “Um…yeah, I think any nurse who is worth their weight in salt, is going to try to engage their patients in such a way that you’re dealing with them holistically as opposed to just doing whatever your doing whether it be the wound that you’re dressing or the medication that you’re giving. And I think that you have the ability when you’re working on a floor, and you’re dealing with people chronically, and you know, frequent flyers; over and over again, you develop a report with them, and um…many times the conversation that ended it, one admission gets picked up from their discharge the next time they come in with an opportunistic infection. And um…I think they love talking about their past. I think that everybody wants to feel important, like they make a difference; like their life had meaning. I think that when they share that stuff with people, I think that they become the star of the moment. No matter how poor, no matter how destitute, no matter how compromised they are. Um…the ability to shine, is important.”

Interviewer: “Could you describe any problems you encountered in using this approach?”

Interviewee: “Oh, I think that you get stoic people that don’t want to talk, absolutely. You get people that look at you and say, ‘Why are you asking me such things? Get the F*** out of here.’ And, ‘I don’t care, why do you care?’ and blah, blah, blah, blah, blah. And I think that, you have to take your cue from that and come back and revisit it later, and certainly there comes, there’s a limit to how many times you can be verbally abused when your asking a question that’s sort of therapeutic or you think is therapeutic and you know, you let it slide. But I think, most of the time, consistency, and just being there all the time, and not changing the way you’re saying is the best way for them to trust you and finally, want to talk about it to everyone. And maybe to ask some questions about your life too, because you’ve got to give a little to get a little; and you have to divulge sometimes, so I think that’s important, you know, I think that’s very important for them. I think they like that, sure.”

Interviewer: “Okay, could you describe any problems that you encountered with engaging the patient with this approach?”

Interviewee: “Oh my God, Sure! Um…telephone swung at my head, um…screaming at me, ‘get the F*** out of here’, ‘What do you care?’. My God, there’s so many times, the people we were dealing with specifically on 7 South or people that are dying of HIV. In very early stages of, of AIDS, there were people that were doing lots of drugs, people that were drinking lots of booze, people that were having lots of unprotected sex, and all of those things reek of dysfunctional personalities and in many ways coping with things in their life by doing more drugs, drinking more booze and having more sex; anything to feel better. And, um…I think they’re a difficult population and you really have to show consistency and you have to be there 100% and never change and never waiver. Be flexible, yes, change and waiver, no. Treat everybody exactly the same. Um…moment to moment; face to face. That’s it. Did I answer that question?”

Interviewer: “You did”

Interviewee: “Okay”

Interviewer: “Um…how did other people in the patient environment respond to this approach? Like, the nurses, staff?”

Interviewee: “UGH!”

Interviewer: “friends or family?”

Interviewee: “Tough. Um, I think that, one of the things that, I loved about doing hospice work and one of the things I love about bringing it back to the Shattuck up on 7 South ‘cuz I think for awhile there it was sort of lost, was engaging families and people in the process from the get-go. And learning a little bit more about their dynamics. And, um…being able to, being able to, take them down the road in an easy, nice kind of way so that they understand once again that you’re not probing, you’re basically just trying to help them to get through it. Repeat the question one more time so I can….”

Interviewer: “um..sure…how did other people in the patient environment respond to this approach? “

Interviewee: “I think that for a long time I went through the route to 7 South, the population up there, or the nurses that were working up there, were very work oriented, job oriented, goal oriented, in terms of getting through their shift. And I think that one of the things that I brought to the department was more of a hospice take on it. Where, if somebody died and you’re working on an 11-7 shift, Um…I’ll give you an example, um…we were…one of our…long timers, named Mark, had just died, black man. Um…at one point he was very studdly. Ah, very studdly man and really thought the world of himself. Um..totally grandiose in his thought about who he was. Well, we became Mark’s family; nobody else would come to see him. Uh, and as his body atrophied and as his feet curled and his hands curled, and he became more debilitated and he finally died. Since he had been there for so long, well over a year, um..I brought in one of the other nurses, two of the other nurses to help me with his care. Now, um, Mark was well loved by a lot of other people. A lot of people didn’t like him because he was so gnarly looking, nasty looking. But, I said, come on let’s go take care of Mark and we all went in together, and it was a Jamaican nurse, LPN, white, gay male nurse, and myself. And we’re cleaning up Mark and it was upstairs on 7 South looking out over Franklin Park. It was nighttime and it was a full moon. And I said ‘hold on a second everybody’ and went over and turned the lights off. I opened the windows, and said ‘let’s just, let Mark go’. Ahh, it’s tough. And, the Jamaican nurse went screaming out of the room. ‘I’m not staying in no room with no dead black man’. And this was indicative of what they thought the parameters of their job was all about. You take care of the patient while they are alive; you bag them when they’re dead, and it’s done. And for me, everybody always deserved more respect than that. And, the holistic part of me wanted to make sure Mark got a good send out. So I think that that response, was indicative of a lot of the responses we get on the floors. Many times I would say to a nurse, ‘you know, if you just give a little bit more, you’re going to find you’re going to love your job. And the patients and you are going to benefit from this whole thing. It’s going to turn out well for you.’ And many times I do exactly what my form 30 tells me to do, my job. I said “well you, you do, barely, and if you gave a little bit more you’d feel better and maybe you wouldn’t be so angry when you came in here all the time.’ I think that the hospice component was something that was greeted as weird in the beginning and later on that that was MY thing and they’d allow me. They would allow me ten minutes with the family; I’d say ‘I’m going into Mr. Blah Blah’s room; family’s in, I just want to talk with them. Would you mind covering the desk?’ and they would roll their eyes, but they would, at request. And I think that was um…that’s pretty much what they were like in the very beginning when I went up there to work on that floor. As Betty Morgan can attest to.”

Interviewer: “Is it still like that?”

Interviewee: “ I don’t know, I don’t work on the floor anymore. Um….I think that that component is gone. I do think that we have some really, really good nurses at the Shattuck, but, I really think it takes a clinical coordinator, a charge nurse, a supervisor, to instill that holistic approach and the hospice approach and the palliative approach to everything that is going on there. And if you don’t start that from the get go during orientation, it’s one of those things that’s an extra-added burden to some people. And culturally, it’s very, very different. You know, and we have to remember that, you know, some cultures when you’re dead, you’re dead and that’s the end of it, you know? And if you’re very catholic or you’re very Christian you might say that your just deserves will be in heaven and ‘I’m done now, I’ve done my job and it’s over’. And I don’t know, I don’t think that way and I’m glad I don’t think that way. But, I think a lot of the nurses do think that way, and I think it’s very cultural. So I don’t know if it’s still that way up on the floor. I do know that when Shattuck used to do patient surveys, we would come on top. We would be the ones they knew. It’s not that way anymore. And I know that for a fact. So.”

Interviewer: “Okay” Um…what were the benefits of using reminiscence in your point of view?” Interviewee: “I think learning about a patient, their background, where they’re coming from, gives you more information about how to take care of them. It, in the case of Carl when he would be mouthing off about this, or I think he thought he was a movie actress or something like that. I think when you get that kind of input, from somebody all along the time you’re taking care of them, it helps you to try to tap into them as to what’s important in the end, and to be able to supply them with the things that is going to make their passing easier. “

Interviewer: “What do you think, I know we spoke a little about this earlier, but, the benefits with using reminiscence in the patients’ point of view?”

Interviewee: “I think they love being a star. I think that everybody wants to feel like their life has been worth something. And it means something, and that somebody cares enough to ask. And I think that makes, regardless if you have family or do not have family, it makes your passing much easier when someone gives you the time to be able to talk about, where you come from, what you’re doing now, and where you want to go. So.”

Interviewer: “Where there negative aspects/difficulties while using this approach? And if so, what were they?”

Interviewee: “I think what we’ve talked about before is some people, were very, very stoic and it’s the nature of a drug addict, and alcoholic, with any kind of person who abuses a substance or any kind of behavior for addiction, their not very forth coming with information. And sometimes they feel like you’re being very, very nosey. And it’s not until they trust you that they open up a little bit. And, sometimes that’s hard and sometimes you never get through. You’re just the, the man to them. The person who’s in charge, the person who sets the rules, and the person that doesn’t give them their cigarettes when they want to smoke. And other times, you know, it’s okay, but not always, not always, no.”

Interviewer: “Did utilizing this approach (you were just saying it did) effect the patients’ end of life care?”

Interviewee: “Ahh, I think so. I think um…we had a patient named Mary who was in the observation room. She had Hep C, and HIV and she also had esophageal pareses, we know her. And Mary was very sick with, I think pneumonia at the time. And um… she’s very yellow. We knew she was end stage liver for sure. And that was indicative of what we were seeing at the time, because, a lot of people were succumbing because of the complications of liver and kidney failure at the time as opposed to anything opportunistic that was really hitting them. But she did have some pneumonia at the time. And umm…I will never forget it was a Saturday night, I was working 11-7;3-11 shift. Mary wasn’t feeling well, I was doing my rounds at 10 o’clock and I popped into her room to see how she was. And she said she felt really bad and she looked extremely pale. And, she turned her head and she started to bleed. Mary was a DNR and I put a chuck pad on the floor, I held her hand, and she bled. (pause) Mary allowed me to stay with her (pause) because she was comfortable with me because of the stuff we had done before. Umm…it’s still hard to talk about. I held her hand and told her she wasn’t by herself. I’d stay with her until the end. And she passed. And um…I think that was one of the hardest ones I’ve had.”

Interviewer: “Are there things you think other nurses should know to provide more comprehensive care to people with HIV Disease and end of life?”

Interviewee: “It’s so convoluted and so involved with everything you do as a caregiver and how you present yourself. That I think that, I think personally that nurses and patients suffer from not opening up and being vulnerable. Um…and I think that if you can somehow share some of yourself with somebody, and your history, and explain to them ‘hey man, there’s just a very fine line between me and you, I think it helps to open up people to be able to trust you, to allow your care in. And, I think you feel so much better about doing that when you deal with someone holistically. Top to bottom, soup to nuts, straight across the board. Um…I think that what I see that’s missing from new nurses, and old nurses, is a sense of vulnerability because they think that, it’s a 9-5er, it’s a shift job, ‘I just need to get through this, do what I’m doing, not share too much of myself, and then I walk out of here.’ But, my thoughts on it are the exact opposite. I think that you have to be vulnerable in life. And I think that you have to show some vulnerability to your patients in order for them to trust you; to be able to take care of you at the end. To know that you’re not the kind of person that’s going to close the door on them, turn the lights out, and I will come back in ten minutes when you’re dead. That would never float for me. And I think that, when you get to know somebody over a long period of time, and you share stories and you laugh and you do some crying, um…I think it’s really, really, important to allow the person to know that they matter. Case and point…umm… taking care of another person, very close to me as a friend, and I was bathing him towards the end of his life, and he was contemplating putting a g-tube in ‘cuz he was really having failure to thrive. And, um..his mom was there. And his mom and us had reminisced a lot about Ray’s history and so forth. She was a very stoic woman but she had a relatively good sense of humor, and at one point I’m bathing Ray, and Ray looks up to me and says ‘George,’ and he said ‘I’ve been through so much with my mom’ and he rattled off some stories and ways he’d grown up and different things about growing up with her. And ‘she knows I’m dying, but she hasn’t cried. She hasn’t dropped a tear. What’s the matter, what’s going on?’ and um…I said ‘I don’t know; I really, really don’t know’. We went through a little bit about their childhood, and about how she raised him. Um…he was raised in Japan, so he was raised to be very, very stoic, not to show emotion, so on and so forth. I took his mom aside and I told her what he said. And I told her that it would be very important for Ray right now in his life if the next time you had some quiet time with him you drop a few tears. Not to slob all over him, not to loose your cookies and breakdown so he has to take care of you, but a few tears at this particular moment will prove to him that you love him, and that your stoicism is about protecting him from feeling so vulnerable. And he’s going to be much happier and be able to die more peacefully, knowing that his mom shed a few tears for him. She did. He did. And this was once again in the springtime and he was waiting for his red tulips to come up. That was the deal he made with us. Shortly after his red tulips were up, he died. Happy. So, yeah.”

Interviewer: “Can you think of anything else that would help us understand the care needs of people with HIV and end of life?”

Interviewee: “I think that the disease is riddled with the stigma um…that goes along with it. Um…of being ostracized, being lower than, being less than, because many times it was that, not anymore, but many times it was sexually transmitted, I think that, and it was tabooly sexually transmitted, because in the very beginning it was all about anal intercourse with gay men and that’s such a taboo. I think that the most important thing you can do for somebody is to um…treat them with dignity and respect. Um…treat everybody exactly the same with universal precautions or standard precautions, with everybody so no one sees you putting on a pair of gloves for them as opposed to anybody else. ‘oh you don’t wear gloves for them but you wear them for me’. Um…I think that those little things that we do that are so grout or so part of our routine, are the things that people pick up on. They’re very, very perceptive and I think, um…once again, I think vulnerability when you’re taking care of someone who’s dying, but, most important. Sharing a little bit of yourself is incredibly important. I think many people don’t because they feel they don’t have to. And, just to remember that you’re dealing with a human being that has a background, has a history, has had a life that deserves to be acknowledged, talked about, shared, and um…applauded. You know, you’re a survivor, wow! Carl, look at all the little things you’ve done with your wheelchair, having us have to track you down and call the police. His Cathedral projects…’look at you’ as he comes out in his gold Lemay dress and a wheelchair. ‘Don’t I look pretty?’ I’m like, ‘well, Carl, pretty I don’t know about, but just, you certainly are a sight.’ I think that, the respect and the dignity is the most important part. And sharing of yourself is incredibly important. Being vulnerable, I think that only translates into somebody that cares. And we all know, everybody knows, regardless of how hard you are, whatever’s going on with your life, you know when someone genuinely cares for you or they are just shoveling the shit. That’s about it.”

Interviewer: “That’s the end”

Interviewee: “Is that good?”

Interviewer: “It is, it’s perfect.”