A chaplain shares what he's learned from hospice patients
By: Linnea Crowther
2 years ago
This Is Terminal is a series dedicated to opening conversations around death and dying, and how acknowledging our mortality can help us live better. In this interview, we learn from the unique perspective of a chaplain working in hospice.
Josh (not his real name) has served as a chaplain at a small Midwestern hospital for about a year. In that year, he's learned a lot about giving support; as a chaplain, he provides spiritual comfort to patients with a spectrum of beliefs. But beyond that, he offers a friendly face, a listening ear, and sometimes even an opportunity for a patient to take out their frustrations.
When I first asked Josh if he'd be willing to talk to me about working with the dying, he said, "I don't know a lot but would gladly converse." As I spoke to him, I found out how wrong he was about how much he knows – his year of experience has given him a unique perspective into the work of supporting patients, from the ones who are about to be discharged to those who are taking their last breaths. Josh has chosen to remain anonymous out of respect for his patients' privacy, but his insights are universal. Read our interview to learn what he has discovered about when to talk, what to say, and when it's best simply to listen.
In a sentence, what does a chaplain do?
I would say my job is to show up and support and be curious so that patients can really be themselves.
Chaplains, alone among health care professionals, are able to just spend some time and be there with patients ... provide them a listening ear and offer some reflections back.
Do you think you spend more time listening than talking?
Yeah, that's right. One of the things that I learned in the last couple years was that it's a lot more helpful for people, often, just to reflect back to them the emotional content of what I'm hearing from them. So they might say something, and my response might be, "That just all sounds really confusing. I think I'd be confused." Sometimes if I hit the mark accurately, that really lights them up, and they say, "Yes, that is totally, exactly what's going on. I'm really struggling with that." Or instead of asking questions, to simply say, "I think this must be really tough to be in the hospital like this," and then shut up. Shutting up is often the hard part, but to shut up and wait and see how they feel in the silence, if they choose to, that gives them the ability to be the author of the conversation. To go where they want to go, rather than where I think they should go.
Can you tell me a little bit about the hospital where you work?
Oh, sure. The hospital that I work at is a short-term, acute-care hospital. So it's a Level III trauma center. ... we don't get gigantic, scary, crisis things, usually, but we get a lot of folks who are dealing with things like ongoing health that is gradually declining. We get a lot of 60-, 70-, 80-year-old people who have something like diabetes or COPD or congestive heart failure or, oh, gosh, pneumonia. Or they have a list of things wrong with them. So not necessarily crisis stuff, but we see a lot of people come and go and then come again, maybe a few weeks later or a few months later, and we're like, "Oh, hello again." They usually live nearby, and so that's why they come to our little hospital. We see them on an ongoing basis because this is where they always come.
Related: Click the photo at left to view "hand portraits" taken by hospice nurse and photographer Mary Landberg.
Tell me about a "normal" day.
On a normal day, I would come into the office and print out a list of patients on the floors that I usually cover. Then I look at the chart notes and kind of figure out which people I really need to see and which people I could see if I have time.
What's the difference between "need to" and "could?"
Well, everyone has their own way that they figure it out. The hospital has an algorithm that will look at a patient's chart, their past history of visits, and the stuff they have been diagnosed with over the years, and will assign a score to them. It's color-coded, so if someone has a red score, that means that they have really serious stuff wrong with them, or that they were recently diagnosed with something that's kind of big, like a cancer diagnosis. Or it means that they have half a bazillion things that add up. You know? So it's like lots of what the health people would say co-morbidities. They have diabetes, and they have COPD, and they have heart failure, and they have previous experience with cancer in their family. So when all that adds up, it says, "Oh, this one is a red one."
So I do look at that color-coding, but I also go to rounds with my own "first list." Sometimes in rounds, there'll be a nurse who, as they're telling the interdisciplinary team what's going on with their patients, will sort of stop and look at me and say, "You know, I really think they could use a visit." Sometimes a patient's doctor will put a request for a spiritual care consult into the system, just like they would a social work consult or a cardiology consult. They'll put in there whatever their reason is; sometimes it's that the patient's requested prayer, sometimes it's high anxiety.
It all plays in together. It's not a set thing, exactly, but every day, you look at your list and say, "Well, I think these are the ones." Then in the course of the day, I might find out that my initial thoughts were completely off, or ... I saw a patient a few days ago who I thought, based on his chart and based on the amount of stuff that was listed as health concerns, I thought, "Oh, gosh. I better brace myself for a long visit." This person was in ICU. I got up there, and I walked in the door and, "Hi, I'm Josh. I'm one of the chaplains here. We try to visit folks in the hospital and just see how you're doing and contribute, as we can, to your well-being." We had this great conversation, and it turned out that, despite all the stuff that was wrong with him physically, that spiritually and emotionally and the way that he made sense of the world, he was fine.
So it doesn't necessarily follow that someone who is physically sick is spiritually or emotionally struggling. Sometimes they're not. Actually, that same patient came back a few weeks later, and I saw his name, and I thought, "Well, I like that person, and this will be an easy first visit of the day. I'll just have a great visit and go on with my day, and it will just be a little hello kind of thing." This time, I got in, and we had a half-hour conversation about the person's parent who was in her last stages of life. His goal is to get out of the hospital in time to spend time with his mother, who is in the process of dying, and to connect with his brothers and sisters. So he had stuff to work with this time, stuff he needed to kind of talk through with somebody.
What's one aspect of your job that people might be surprised by?
That there's this element of "foolishness" in our job. ... sometimes my job is to be the stupid one in the room and name the pink elephant that everyone else is ignoring and say things like, "Well, I suppose you could die. You know? Have you thought about that?" They might initially be shocked or sensitive about hearing that, but they don't have to do all their thinking about it when I'm in the room. So sometimes my role is to play the dumb one and to say, "Oh, golly, it seems to me like that'd be really hard. Have you talked about it with your family?"
Related Read: Interview with a Hospice Massage Therapist
Then I get to go out of the room and do other stuff with my day, but they, in the room with their loved ones, can talk about it if they want to, without having me there. None of them had to bring it up, but someone did. The chaplain did. Once I've gone, my thought is, often, probably they have a discussion about it, because now it's on the table in front of them. They were too uncomfortable to bring it up themselves, but now that someone else did, they'll talk about it.
Is it hard for you to bring something like that up? Or is it just like, this is my job, I have to open these difficult questions?
It can be hard. Sometimes I don't do it because I get a read on the emotions in a room or what people are capable of or what they really want to talk about. You know? Where they are at the moment. Sometimes I don't, just because I think, "No, right now is not the time." Sometimes what they really want to do is to be a normal person.
I had a patient who had a diagnosis of terminal cancer with metastases everywhere. His family was not so connected. I went in the room, and he said, "You know, I just don't want to talk about death. I can't. I can't talk about it. I know it's there. I just ... If you want to talk about death, just go away now, because it's not where I'm at." I said, "OK. We don't have to talk about death. But you know, tell me who you were before you were a patient, before you were the sick guy in the bed." He lit up, and he talked for like an hour about being a contractor and how he loved it and how he had this whole system set where he would buy old homes that needed work. Then, because he had the skills, he would fix them up, and then he'd live in them for a while. Then he'd sell them. Then he'd get another house, and he'd fix it up. He was so proud of that.
So in that case, my role was ... I suppose if I were charting it, I would say, "Chaplain facilitated life review." But what I was able to do with that, in addition, was to put some of it in the chart, because part of what we do, as chaplains, is keep patients human for the care team. It's easy in health care to compartmentalize and to think, "Oh, well, the patient ..." Sort of categorize people based on their illness and then focus on the illness part. But in chaplaincy, some of my charting is meant for the care team, to keep the person who's in the room as a person. So I'll chart about, "Patient shared with chaplain how he fixed up homes for a living and loved that work, and his favorite house was the last one he lived in." In that situation, what he needed from me – from somebody – as he was dying, even though he didn't want to say the word, was to be a regular guy again.
Now, in the humor of the divine, he got a chaplain who doesn't know much about construction. So I nodded and smiled a lot; I asked questions and said things like, "Oh, that sounds really cool," or, "You must have liked that a lot." He had the best visit ever. He didn't live a whole lot longer than that, but he got to be a regular guy with another guy for a while, and that was, in itself, a beautiful thing for him.
Really, most of our work is to be with people and to help them be their best selves in the moment, facing whatever they need to face. But what they need to face varies. Sometimes I push a little, and sometimes I don't. Sometimes I go out of a visit thinking, "Well, that was kind of a waste of time. I have no idea that I had any effect, positively, on that person at all."
Is it discouraging when a patient doesn’t want to talk to you? Does this feel like failure?
Sometimes, the chaplain can help by getting kicked out of a room. If the patient refuses almost any other caregiver's care – if they said to the doctor, "Well, I don't want to do any of the stuff you're telling me," or if they said to the pharmacist, "I'm not gonna take any of that stuff," and they said that on a regular basis – then eventually, the hospital would say, "Well, if you're not going to accept the care that we're giving you, then out you go."
But patients can say to the chaplain, without repercussion, "Get out of here." I have gone in sometimes to a room, pretty sure that I'm going to be kicked out, but wanting to give the person the chance to say "no" to somebody, so that they feel a little control in their lives. So they can say, "No, I'd really rather not. Thank you very much," or, "No, I'm not in the mood." They've made a decision, and they got to have some control.
One of the things that I learned from my colleagues was that when working with people who are in locked wards for inpatient mental health or inpatient chemical dependency treatments, one of the biggest issues is getting their cafeteria food order correct, because it is the only thing they get to choose. It is almost literally the only choice they get to make. So it's really important, in that case, to get the doggone applesauce when they asked for applesauce. You know?
Food is important. It's one of the only things that's kind of normal in the weirdness of being in the hospital.
Getting it wrong is way more devastating than it would be if you got your food wrong at home, I think.
Yes. Yes. Exactly.
Are you limited to helping patients who have the same faith as you?
Sometimes people are dying, and they just need to know that you're there. I visited some hospice patients, and they call, and they say, "Well, we're Catholic." I say, "Well, I'm Episcopalian. So we're kind of cousins. But if you need Catholic sacraments, I can't give you that." "Oh, well, we can call the priest for that, but that's not what they need right now. Just come. You're close enough." So I can come. Sometimes they need to hear their ordinary prayers, but sometimes they just need someone to kind of hang out with them for a while. The hospice nurse calls, and she says, "I can't tell if they're dying or not, but I think they might be, but it's been a while. But to be on the safe side, why don't you come out?" So I go.
I once got called in the middle of the night, and the patient had a difficult motor vehicle accident, and they tried to wean them off the ventilator, but they weren't finding a whole lot of brain activity. The only other relative had said, "It's time to let go and to turn off machines." The patient's systems were shutting down. So it ended up being me, the patient, the patient's mom, and a nurse, in the wee hours - like 12:30 at night - sitting in this room.
At a certain point, there are times when I, as a chaplain, can tell that I just don't have a whole lot of inspiration or energy, or I've never had this particular situation present itself before. So again with the foolishness. There are times when I just take a chance. I'm thinking to myself, "Heck, I don't know." I say, "Well, what's his favorite music, just out of curiosity?" The mom just lit up and said, "Oh, my gosh. Country music. He loves country music." It turned out that his favorite song was ... oh, who is the singer? "Living on Love." Travis Tritt or something. "Living on love, buying on time, without somebody, nothing ain't worth a dime."
I happened to have that one on my iPhone. So in the middle of the night, we sat there and listened to a little country music. Then it was quiet, and we talked about memories. I said, "Is there anything else right now that would be helpful? Or would you like your time together?" She said, "No. I think we're OK." So I don't necessarily always stay until a person who is in the process of dying actually dies, because people who are dying will ... I don't know if they choose the time. I think some of them do. But in any case, it's not really easy to predict.
In the movies, they say, "Oh, the person's dying," and they're gone. But in my experience, working with folks who are at the end of life, they often take their own sweet time. They might call the chaplain and have a visit, and then it's hours or maybe a day after that, that they finally go. So I've learned not to promise to families, "I'll stay here as long as it takes," because I'm like, "I'm gonna need to sleep some time."
I often encourage them, too, and say, "You may need to step away at some point, to care for yourself, because you are still alive." It may be that the person who is dying is waiting for you to step away, so that they can die.
Once, I visited a patient, and he clearly knew that he was at end of life, but none of the rest of us really did. We knew that he was seriously ill. We were talking with him, his wife and I. (His wife was around 92, and he was 94 or so.) He said, "Oh, you know, you should go down to the cafeteria and have a little lunch." She said, "Oh, no. We can stay here." He said, "No, no. You should go. Both of you go and have a little lunch." We got down to the cafeteria, and we heard, "Code blue," which means someone has stopped breathing. It was him. He had literally sent us out of the room so that he could die. I'm convinced it was because he knew that his wife, who was really, really in love with him and really connected to him, wouldn't have been able to handle it, to see him die.
But on the other hand, some people will wait, will hold on and wait until a certain loved one is in the room before they go. People are individuals. It's hard to predict.
I love the work, and I often have this experience where I tell people a little bit of what I do, and they say, "Oh, I could never do that." I guess it always surprises me. There are times when I need to step aside and just cry for a while, find a quiet place in the hospital, the chapel, or a stairwell, or somewhere, and just kind of get some tears out. Some of the time, the work is really sad.
How do you deal with the emotional aspect of the job?
I'm an introvert, even though I don't necessarily sound like it. I need time alone to sort of recharge my batteries and to reflect. So for me, after a day of visiting 16 or 20 patients, I'm kind of emotionally worn out. There can be this element of just being emotionally and spiritually drained after a lot of interaction. But then you get the great stories. So it's this balance of, "Oh, gosh. That was so awesome," and, "Now I need to sit at home and eat some ice cream for a while." Or go to the gym and work it out and get some stress out.
The nice thing about chaplaincy is that, yes, it's the hospital that has all these people who die, and yet at the same time, there are babies being born. Sometimes there's an aspect of baby therapy where, occasionally, there's a little one who is there because they've just been born or because they're there to visit a patient. It's just wonderful, refreshing to see. Oh, gosh. What a great thing.
There's also a therapy dog named Sparky, who is a cockapoo or something like that. She's about the size of a football, and she's very fluffy and sort of like a mop. The first time I met her, she was walking down the hallway, and I said, "Oh, what a lovely dog." Sparky, from her vantage point, looked me up and down and immediately flipped over on her back for tummy rubs. I was like, "There is no way that I can resist giving Sparky some tummy rubs." That just kind of made my day.
So there are ways that we all need to kind of refresh ourselves and laugh at the silly stuff and get through it. Because it's not necessarily easy, but there is this element of joy and silliness and humor that you've got to have in health care, and you've got to have when you're around death. Even in some of the saddest situations, in most of them, if a person has died or is dying, it's not only tears, but it's also laughter as people start to remember who a person was. For the Italian family to say, "Oh, when we were growing up, it was Sunday dinner at grandma's house, and you better have a good excuse if you were gonna not be there." I say, "Well, my experience is there's never a good excuse. Am I correct?" They laugh, and they say, "That is totally right. That's how it is."
It's the fun stuff that is mixed in there about the joys of life, and that all comes out when someone has died, the remembering. "Oh, that great story, or that crazy thing that happened when they got sick, or how they used to cuss, or how she always had bright-red dyed hair and how she got it done between doctor appointments that one time." So the great stuff about being human is that it's all mixed in together. For me, that's some of the most interesting stuff about chaplaincy, to kind of get to that mix and share it with folks a little.
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