We’re posting weekly transcripts of David Plotz’s Working podcast for Slate Plus members. This is the transcript for Episode 9, which features hospice nurse Kathy Kuencer. To learn more about Working, click here.
You may note some differences between this transcript and the podcast. Additional edits were made to the podcast after we completed this transcript.
David Plotz: What's your name, and what do you do?
Kathy Kuencer: My name is Kathy Kuencer, and I’m a hospice nurse.
Plotz: What's the first thing you do when you get to work in the morning?
Kuencer: The first thing I do is I count. We have a lot of narcotics, and so we do that at the beginning of a shift and we also do that at the end of a shift. And then we listen to report. We all sit down around a table, sometimes with a doctor and sometimes not, and the nurse that is leaving the shift gives us a report on the patients that we have. I work at a nine-bed inpatient unit.
Plotz: And what might be in the report? What is the kind of things that the outgoing nurse is going to be telling you?
Kuencer: We always give the patient’s name, their age, their sex, their diagnosis, why they’re there. We always give their status, which is DNR.
Plotz: Sorry, DNR, just explain what that is?
Kuencer: Do Not Resuscitate or Do Not Intubate. We always give when they had their last bowel movement, and we—that's just for the starters—then we include whether they have a central line, or a metaport, or if they have any kind of extraneous IV lines going into them and whether they have a Foley catheter. We give a general report about what their day—the patient’s day—was like.
Plotz: Does every patient who comes into the hospice center you're working at, are they conscious? Do they know where they are? Have they made a decision to be there?
Kuencer: I think about 60 percent of our patients come to us—maybe 75 percent come to us with some kind of delirium, confusion, agitation, or unresponsive. They shortly become unresponsive. This is very distressing for the family members believe it's the drugs. They believe it's because they were moved. But really what's happening is, the body is shutting down and no one has told the family this. So for most of our patients they are really not alert and oriented, and they need someone to help them make decisions, life decisions for them. And usually it's a family member, or a close friend, or a partner that's doing that.
Plotz: Let’s go back to your responsibilities. So you've taken over on the shift—what is it that you're doing for these patients who are delirious or unconscious, that's helping them?
Kuencer: Well, as a hospice nurse, first of all we’re thinking of comfort and we’re thinking of pain control. They usually come in for pain, shortness of breath, agitation, or seizures. And so, we’re looking—we do a lot of pain control and then we also—
Plotz: What are the kinds of drugs that you're giving?
Kuencer: Our drugs are really—they go back to the very basics of when hospice first came out. We give a hydrocodone which is called Dilaudid. That's a synthetic morphine. We also give methadone. Methadone is a very, very effective drug. It's about 10-times more powerful than morphine, and it's very, very effective, especially with nerve pain. We also give a short-acting morphine and we give a long-acting morphine. We give Lorazepam or Ativan, and we used that for anxiety and we also use it for seizure control. We also give Haldol, which is an anti-psychotic. We use that for agitation. We also have some drugs, Robinul, for secretions, and we do Albuterol treatments because sometimes we have people who come in with chronic lung disease of some sort another. And this is just a comfort weather. If they have wheezing or they’re having difficulty breathing, we have these drugs on hand to just make them comfortable. It's not going to change the longevity of their life or anything.
So, those are our basic drugs. We also have a laxative that we try to give. Some patients refuse, and it's their right. They can refuse any medication.
Plotz: Do the patients who are conscious come in fearful of death, or agitated about—what are they agitated about if they are agitated? And are they coming fearing death or not?
Kuencer: Usually our patients that are agitated, sometimes they have a cancer with mets to the brain, or with metastases to the brain. They may have something metabolic going on in the dying process. Or, sometimes they also have a diagnosis of brain cancer, and so they’re going to be delirious and agitated. We also have something called terminal agitation that sometimes happen towards death.
I think the team—the hospice team, not just the hospice nurse but the doctor, the social worker, and the chaplain—we all realize that pain is not just in the body. There's the mind and the body. And some people really do have a psychological, spiritual pain that the drugs that we give them may or may not touch.
Plotz: And what, if someone has that pain that isn’t responsive to medication, that psychic pain, what is it that you do to nurse that person?
Kuencer: Well, this is a little touchy. The rule is: is the patient doing harm to themselves or to you? Because some of our patients, in my experience, are very strong even at the end of their life, and they can—we do not restrain at the facility I work at. We use no restraints. So they’re at fall risks, they can actually even in their delirium leap out of the bed and may have a fall. Or, when we’re trying to put them back into bed, they could really—it's a defensive mechanism, they could actually strike out and hit us, and some of us have been physically assaulted.
So in the last measures, if let’s say a combination of Halidol and Lorazepam doesn’t work to calm the patient down—and also talking to them in a calm voice, putting a reassuring hand on them sometimes will settle them, working with the families if the families are there, this will settle them down—we have to resort to phenobarbital or something a little bit stronger to really calm them down, so that they’re not hurting themselves and they’re not hurting the staff.
Plotz: How often do you get to talk to a patient in an actual real conversation where they can convey something important to them, or you can offer them real comfort that they can understand? Does that happen frequently, or is that a rare occurrence?
Kuencer: It doesn’t happen frequently. No, most of the time I’m talking with the family, I’m really working with the family answering their questions. I am listening. There's a lot of guilt, especially if an event happens at the hospital. A family member will think, “What could I have done to prevent that from happening?” So, a lot of times I am really listening to the family members as they come in, and see what their baseline—what they know, and what do they want to know? And then we go from there.
Sometimes we do have patients that we can talk to, but it's more listening. And you always hope that you can do a life review or you can encourage family to bring in pictures and favorite music, or bring in things that will make the room—some of our patients like flowers. Some of our patients will actually say, can you move the flowers so that I can see them? And they will engage with us.
Plotz: What's a life review?
Kuencer: You just start a conversation where—you can ask them where they’re from, or what did they do? And then you try to let them lead you, whatever topic they want to pick about their life, or talk about their children, or—and then sometimes that will lead the conversation to dealing with the idea that, “I’ve done all—I’m OK with going, it's just the people I’m leaving behind. Or, I’m not OK with it, I have some unfinished things that I need to do.” And so, this is what you try to do.
I happen to be a talker and I love to talk. But not in my job. I feel that my job is to listen to watch, and to do what I can. I always talk to my patients no matter what state they’re in. I always greet them. And I always introduce myself. I tell them what day it is. I tell them what time of the day it is. I tell them whether I’ve had them or not.
I really do believe that the hearing is the last to go, and the hearing is very acute. So when family members come in and they start yelling, I always take them out of the room and I say, you don’t have to do that. Even with patients who can’t hear, I think that their hearing at the end, they can feel it. So I always try to emphasize to talk in as soothing a voice as is possible, and to say the really important things, which is really at the end it's about love. The judgment you put aside. You try to get family members to not judge each other. So-and-so’s not coming often enough. They really want to get into that. They really want to focus on what is not right, and you try to move the family away from that. By life review, you try to get them to be in touch with their heart, their love. And then if that happens, then at the end all that's there is love, and that's what you hope for.
Plotz: When you're talking to the family, what are the kinds of questions that family members are asking you? What are some of the main themes?
Kuencer: “Is my loved one going to die?” And I say, “Yes, they are.” “Do you know when?” “No, I don't.” Then sometimes I will ask them at this point, is it important for you to be here? And we put that on a big note on their file if it is, call so-and-so. Sometimes we do know when a patient is actively dying, we just can’t pinpoint the time. It could take eight hours, ten hours, four hours, one hour, two hours. We try to make that happen.
Plotz: Let me interrupt you there. What would be the signs that you would have, that a patient is actively dying or will die in the next eight to ten hours?
Kuencer: Change in breathing. The breathing usually gets more shallow. They have what we call apneic periods, periods where they are not breathing at all. And these can last as long as 30 seconds, and 30 seconds is a long time. Sometimes 45. I have seen patients go 45 seconds before taking another breath. So they start to change their pattern of breathing. That I always use as a guide. But they sometimes have a look, but you know, I can’t really say that because they have—I just had two patients this past week that I thought were going to die on my shift, and they are still there. So they are very strong, and both of these patients are 95 years old.
Sometimes they will start have what looks like nausea. They will start to be a bit agitated. And this is a real decision call, do we—is this agitation due to just because they’re agitated and something is going on? Or is this agitation because they are really dying? And we don’t want to medicate them at that period. That’s a hard call to make.
Plotz: If you were a family member or you yourself were a patient, do you think there's any benefit to the patients living longer once they’ve gotten to you? Or is your view, if someone comes in the door and then they’re died an hour later, that's better than them having lived a week in this kind of state?
Kuencer: No, I don't have any judgment about that. I did have a patient—because this is big city hospice nursing, I did have a patient that came in very much in distress, that probably was going to die in the hospital. She was very, very agitated. She had full-blown AIDS, Hep-B, and Hep-C. She was quite emaciated. And it was very, very difficult to see her. At the end of the day, I feel that we gave them a clean bed and a beautiful room to die in. And so, whether they’re for an hour or four hours or three days, I really feel that we’ve made them comfortable in the end, and whether they have family there or not, we’re there.
Plotz: Do family members ever ask, can you give them some extra morphine? Can you make this happen faster? Does that ever happen?
Kuencer: Yes, and I say, “I can’t do that.” Sometimes when I did home hospice I was asked about helping to end a life, and I also said, I don't know that—that’s not within my realm of nursing. Usually the case is, the families want something to blame and they’re blaming you or the drugs you're giving them. So, they don’t want you to medicate. They would rather have their family member in pain and alert, than have them maybe not so alert but comfortable. And this is where the education comes in.
Plotz: So what's is the conversation you'd have in a circumstances like that?
Kuencer: We have many conversations. We begin it by explaining about the process that the patient is going through and their dying process, and what we do, which is comfort. And we talk about that it's not the medication, it's not the drugs. If that doesn’t work we often get the doctor—they often want to speak to the doctor, and so we get the doctor on the phone. Our doctor usually tries to head that off at the pass, and actually talks to the family members right away.
Plotz: If it's a 95-year-old who’s dying, we can all live with that. That seems reasonable, we’d all by thankful to get that are ourselves, or I certainly would be. But is it just harder to be at work when you have to face patients who are your age or younger?
Kuencer: Many patients are younger than me, actually. I really try not to have any judgments. I think that my own personal belief is that we make a bargain when we come into this world. Part of being born is that we’re always going to die. And I think I live with that every day, and I’m under no illusions about it. And I really feel, especially when I hear things like—with the IV drug users, or if they come in with full-blown AIDS, well, you know, this is what they’re chosen for their life, and so this is what they’re going to get—I really feel that that's not my place. That I don't—I’m not in the business of judging, I’m in the business of taking care, care-giving. And also, I want my patients to be comfortable, but it's messy. Dying is not—it can be peaceful and it can be for some a very beautiful experience. It's always a learning experience. There's always something to be learned. But it's pretty messy.
Plotz: When a patient dies what do you do?
Kuencer: That's a very good question, especially when we first admit them. So let’s say I admit a patient at 5. I not only admit them, get them calmed down, or get them in a place where they are comfortable, I then have to call the doctor. I have to get orders. If the doctor isn’t there I have to get specific orders. I have to also give the doctor a report. And I have about two hours of paperwork, along with my other patients, that I have to enter into the computer, and also we still have a paper trail.
Now, let’s say the patient dies at 9:15 p.m., four hours later. This is a good example, it does happen. If a patient dies within 24 hours of being admitted, you have to call the medical examiner. So I go in, and sometimes I’ve gone in to make rounds or sometimes a certified nurse’s aid has gone in to maybe do care on the patient, and she realizes the patient isn’t breathing. I go in, I listen for a heartbeat, I look at the respirations, and I determine that the patient is no longer alive. I call the doctor –
Plotz: That's your determination?
Kuencer: Yes. In other states, in New Mexico we are certified—we are deputized by the medical examiner’s office to pronounce people dead in their homes, and that's part of the hospice nurse’s job. Here in Washington, D.C., in the inpatient facility, we determine this and then we call the doctor. If this should happen within 24 hours we have to call the medical examiner, because was there foul play? Did the patient fall? Was there negligence?
And the medical examiner will get on the phone and really ask all the questions he or she needs to ask of us. When they are satisfied that no foul play has been done, we get a medical examiner record number. We need this number to release the body to the funeral home. So if that happens within 24 hours, this is what I need to do besides doing the death summary, the post-mortem visit, and all of my notes.
Plotz: How do you inform the family?
Kuencer: After I call the doctor I call the family. Before I do anything else, I call the family and ask them if they’re alone. And usually when I tell them who I am, they either know or they may start to get very upset. And I stay on the line. I stay on the line until they can calm themselves down, and I make sure they’re not alone. If they are alone, I have another nurse on another line calling another relative to go to their home and let them know, so we’re working together on this.
In one case, I knew that the daughter had just left and she was driving home. I waited. I did not want to call her on her cell phone. I wanted her to get home first, and then I waited and I called her sister. It just depends, but definitely we make the phone call.
Plotz: What would the conversation be? What would you say?
Kuencer: I would say my name, and I would say I’m calling from, and then I ask them if they’re home alone or if they’re with someone. And then I tell them I’m very, very sorry that so-and-so has passed away. Sometimes, it depends on the language—sometimes they use the word “gone.” I will use the word “gone.” Sometimes they will say, “no longer with us.” I will use those words. Sometimes they will say, “crossing the river.” I will say that he or she has “crossed the river.” It just depends. Sometimes I’ll get to know the families well enough to know their vocabulary and I will use their vocabulary. If not, I will just be right out there with it. I mean, I will just say that so-and-so has died. In fact, most of the time that's what I say.
Plotz: What information do you then convey to them about what's happening to the body, or the funeral home, or anything like that? Or are they conveying that to you?
Kuencer: The other part I didn’t put in is that, once we determine that a patient has died we usually prepare their body. And a lot of times we’ve already given them a bath, but if we haven’t we bathe them. I remove—or, the nurse—it's the nurses job to remove all the lines. If they have any peripheral lines, or any subcu lines, or a Foley catheter, we remove all that. If their mouth is open we put a towel under their chin, because we want their mouth to be closed. And then we wrap them, like, in a shroud, regardless of whether their family comes or not.
So, that's done. Then I usually ask the family if they want to come and visit, that the patient is—that their loved one has been prepared and they can come and visit, and say their goodbyes. A lot of times they don’t want to do it, they don’t want to come. And that's fine. And then I will say, “Do you want me to call the funeral home?” Or, I’ll call the funeral home. Because we do not have cold storage, so the funeral home needs to be notified. And that's what we usually do. Sometimes they want to be there, they want to come first, and usually the funeral home doesn’t come right away.
Plotz: What is it like to give a bath to a dead body?
Kuencer: It's actually a privilege. Most of our patients haven’t been dead for very long. They’re still very warm. I treat—we all do, actually—treat the body with respect. And actually, I don't know if “love” is the right word, but it's very lovingly done.
Also, I think in the end it's just a body. We—I treat it very respectfully, but it's very obvious to me that there's no one there, and that that spirit or whatever, I don't know, has gone. And whoever made that person that person is no longer with us.
Plotz: Does anything funny ever happen? Do you guys ever laugh? What kind of funny things?
Kuencer: Well, the other night we were watching I guess what I would call a “black” channel—I work with a lot of African-Americans. And we have a nice living, dining room area where we have a very big TV, and I guess that channel was having an awards and Chris Rock was on. And it was a quiet night and everyone was comfortable. I mean, we had—we had six patients but everyone was comfortable and it was—so, we were sitting around watching.
And I did think, wow, you know, we’re laughing and we’re enjoying the show, we’re enjoying each other, but we’re also paying attention to what's going on. But I think that we do laugh that way. Sometimes I say, well, you know, when somebody’s in a rush I tell them to just slow down, that we’re not saving lives here. I mean, that's kind of dark humor, but I do say that and that usually gets a life. Because I—you know, when I see somebody that's getting stressed out, or wound up, or something, I’ll just sort of say that.
Sometimes we’ll make—I hate to say this, but sometimes we’ll just make crazy jokes. Sexual innuendoes with each other. We’ll talk about—make fun of each other’s private lives—and most of us are going through menopause or are menopausal, and so there's always a fight between who wants the fans going, who’s hot, and who’s not hot.
I do wonder, and I haven’t had the opportunity to ask family members—because they’re always giving us pretty good feedback—what they must think when they hear us laughing.
Plotz: Do the families—are the families ever—I mean, do you ever think it's appropriate to make a kind of wry remark to a family? Or do you think that's out of place? Or, are there moments where that would be OK? And are they ever doing it with each other? Because I remember, I think when my grandmother was dying, she was 101—but we spent a lot of time—she was a funny woman and we just spent time sort of saying—remembering funny things. I don't know if that happens with families, too?
Kuencer: Well, there's your life review. And we do, we do have families like that. Families will fly in from all over the country. So, it's a reunion for them, and they’ll sit around and tell jokes and laugh. And sometimes I’ll be in there and we’ll be riffing on something, and if it's totally appropriate, yes. Because I love to laugh, I love it when other people are laughing, and so I like to get in the game of it, too, if it's appropriate. It's not a gloomy place.
Plotz: Do you think you'd want to go through hospice?
Kuencer: Oh, definitely. Well, I don't want anything—my advanced directive is I don't want anything. I don't want any heroics. If I was diagnosed with cancer today I would not have any treatment, I would just live whatever time I had out. I do not—at this point in my life I’ve had a good life, I’ve had a full life, and I don't have a whole lot of regrets. I wouldn’t go for any treatments. At least that's what I think now, I mean, because, you know, I don't have anything. But in my advanced directives I have nothing. If it's possible and not hard for my family I want to be taken home to die, but if it's not possible then I don't want any fluids, I don't want any food or feeding or anything extraneous done. So, and I hope there is a hospice that I’ll be able to go to, if that is the way I’m going to go.