Illustration by Charity Ellis
Angela Song is a chaplain in the palliative care department at Providence St. Joseph Hospital in Orange, California.
Joy Netanya Thompson: You’re a palliative care chaplain, but I think when a lot of people hear “palliative care” they think of “hospice care.” Are the two different? How would you define palliative care?
Angela Song: Yes, I think a lot of people get confused with the terms “palliative care” and “hospice care.” Palliative care is for any person in the hospital with a serious illness—a life-limiting or life-altering illness—who needs guidance and extra support, whether it be with pain management, symptom management, or just being in the hospital. You’re going through so many different medical decisions as you’re going through your plan of care, and you need sustaining support emotionally and spiritually. As chaplains, whether we’re catching them very early on in their illness or toward the end, we’re walking with them as they articulate what is most meaningful to them at that moment—their values—and aligning that with their care at the hospital so they have the best quality of life throughout that season of their illness.
Whereas hospice, it’s saying, Okay, we have about six months or less as the patient approaches the end of their life, so we are really going for comfort-based care and making sure that quality of life is something we uphold without any more treatment.
JNT: Does that conflation of palliative and hospice ever cause alarm in a patient or patient’s family if you come in and introduce yourself as part of the palliative care team?
AS: We are constantly coming up against this, especially with families who aren’t ready to face any of that. When they hear “palliative,” all of a sudden, their alarms go off. And the chaplain’s presence, I think, carries another layer of, “Oh my goodness, why are you here to see me?” since they might think chaplains come toward the end of life. It’s a common misconception. We’re still continuing to educate throughout the hospital, even with our physicians. But palliative care is a spectrum of care. Someone can continue to pursue aggressive curative treatment if that’s the goal they have. Like, they know they’re sick, they know they’re maybe moving toward a terminal illness, but they say, “Okay, right now I still have the strength to want to fight. I still see what’s possible.” Then we continue to align with their goals, continue to have these very dynamic conversations to say, “What does that treatment look like? Is it chemo and radiation? Do you want to seek alternative medication?” But as their disease progresses, they’re getting weaker and weaker, and sometimes the benefits and the costs don’t really align. So when we get there, when they finally decide, “Okay, no more treatments,” that’s kind of the far end of the palliative care spectrum. It’s not about dying; it’s about how you live well and how we can collaborate with you to get what you want.
JNT: How receptive are people to you and to your work initially? I’m sure it’s different for every person, but what are some of the common responses? If a patient is resistant at first, do they tend to warm up over time?
AS: It really depends. One of the misconceptions that people may have is that chaplains look a certain way. Honestly, I think they’re expecting to see an older white male, perhaps. But I think for every individual or every family, it’s different when I come into the room. A lot of times I think it’s curious. In that moment, especially with palliative care, they’re going through a really tough time. So already the emotions are amplified. I think some just welcome a chaplain’s presence because they understand that, “Wow, I just need to feel that support. I want to talk to someone. I know I can probably trust you with some of these harder questions.” Sometimes they’re kind of suspicious. They don’t want to be proselytized to. They don’t want to have anything imposed on them, especially in such a vulnerable moment. But in our conversations, the trust builds and whatever fear that they imagined when I walked into that room and introduced myself as a care chaplain gets dismantled as we’re engaging. And they feel a certain sense of, Okay, she’s not here to impose anything on me, or make me make any decisions. My role is really to explore, to ask questions, to remain curious. And really, we’re here to follow their guidance to figure out what it is that matters most—what’s most sacred to you? How can we get you to where you really want to go? In time, through our conversations, I’ve found people are receptive.
JNT: Can you walk me through what it looks like when you first meet a new patient? And what does that relationship look like over time?
AS: It really depends on what they’re here for and the length of their stay. I get the opportunity to walk with some patients for two or three months, depending on how long they stay at the hospital. A lot of times, we are limited to two to four visits. We’ll do consults about symptom or pain management, but sometimes our goal is exploration, where we discuss what is most important to this family and to this patient right now. How do these medical decisions really align with their values? For example, code status. We all have to talk about code status in the hospital. If something critical were to happen, like if your heart would stop and if you were to die, then would you want the medical team to come and bring you back to life? Those are the kinds of really serious conversations that we have to have. But a lot of times, patients in the hospital are going through so much grief, already losing their independence, losing agency . . . life as they knew it is gone now. With a chaplain, they can share how this illness has been impacting them. A lot of times it’s hard for patients to have this kind of very frank conversation with the people closest to them because they’re so invested and so in it with the patients. That’s really where chaplains come in, sitting with them in their struggling to help them articulate and find meaning in the chaos.
JNT: It seems that in practice, a lot of your job is simply listening. But I wonder if there are certain strategic questions you employ to navigate the conversations you’re having with patients and their families?
Joy Netanya Thompson (MAT ’12) is an editor and writer based in the Los Angeles area. Find more of her work at joynetanyathompson.com.
Angela Song is a chaplain in the palliative care department at Providence St. Joseph Hospital in Orange, California.
Angela Song is a chaplain in the palliative care department at Providence St. Joseph Hospital in Orange, California.
Joy Netanya Thompson: You’re a palliative care chaplain, but I think when a lot of people hear “palliative care” they think of “hospice care.” Are the two different? How would you define palliative care?
Angela Song: Yes, I think a lot of people get confused with the terms “palliative care” and “hospice care.” Palliative care is for any person in the hospital with a serious illness—a life-limiting or life-altering illness—who needs guidance and extra support, whether it be with pain management, symptom management, or just being in the hospital. You’re going through so many different medical decisions as you’re going through your plan of care, and you need sustaining support emotionally and spiritually. As chaplains, whether we’re catching them very early on in their illness or toward the end, we’re walking with them as they articulate what is most meaningful to them at that moment—their values—and aligning that with their care at the hospital so they have the best quality of life throughout that season of their illness.
Whereas hospice, it’s saying, Okay, we have about six months or less as the patient approaches the end of their life, so we are really going for comfort-based care and making sure that quality of life is something we uphold without any more treatment.
JNT: Does that conflation of palliative and hospice ever cause alarm in a patient or patient’s family if you come in and introduce yourself as part of the palliative care team?
AS: We are constantly coming up against this, especially with families who aren’t ready to face any of that. When they hear “palliative,” all of a sudden, their alarms go off. And the chaplain’s presence, I think, carries another layer of, “Oh my goodness, why are you here to see me?” since they might think chaplains come toward the end of life. It’s a common misconception. We’re still continuing to educate throughout the hospital, even with our physicians. But palliative care is a spectrum of care. Someone can continue to pursue aggressive curative treatment if that’s the goal they have. Like, they know they’re sick, they know they’re maybe moving toward a terminal illness, but they say, “Okay, right now I still have the strength to want to fight. I still see what’s possible.” Then we continue to align with their goals, continue to have these very dynamic conversations to say, “What does that treatment look like? Is it chemo and radiation? Do you want to seek alternative medication?” But as their disease progresses, they’re getting weaker and weaker, and sometimes the benefits and the costs don’t really align. So when we get there, when they finally decide, “Okay, no more treatments,” that’s kind of the far end of the palliative care spectrum. It’s not about dying; it’s about how you live well and how we can collaborate with you to get what you want.
JNT: How receptive are people to you and to your work initially? I’m sure it’s different for every person, but what are some of the common responses? If a patient is resistant at first, do they tend to warm up over time?
AS: It really depends. One of the misconceptions that people may have is that chaplains look a certain way. Honestly, I think they’re expecting to see an older white male, perhaps. But I think for every individual or every family, it’s different when I come into the room. A lot of times I think it’s curious. In that moment, especially with palliative care, they’re going through a really tough time. So already the emotions are amplified. I think some just welcome a chaplain’s presence because they understand that, “Wow, I just need to feel that support. I want to talk to someone. I know I can probably trust you with some of these harder questions.” Sometimes they’re kind of suspicious. They don’t want to be proselytized to. They don’t want to have anything imposed on them, especially in such a vulnerable moment. But in our conversations, the trust builds and whatever fear that they imagined when I walked into that room and introduced myself as a care chaplain gets dismantled as we’re engaging. And they feel a certain sense of, Okay, she’s not here to impose anything on me, or make me make any decisions. My role is really to explore, to ask questions, to remain curious. And really, we’re here to follow their guidance to figure out what it is that matters most—what’s most sacred to you? How can we get you to where you really want to go? In time, through our conversations, I’ve found people are receptive.
JNT: Can you walk me through what it looks like when you first meet a new patient? And what does that relationship look like over time?
AS: It really depends on what they’re here for and the length of their stay. I get the opportunity to walk with some patients for two or three months, depending on how long they stay at the hospital. A lot of times, we are limited to two to four visits. We’ll do consults about symptom or pain management, but sometimes our goal is exploration, where we discuss what is most important to this family and to this patient right now. How do these medical decisions really align with their values? For example, code status. We all have to talk about code status in the hospital. If something critical were to happen, like if your heart would stop and if you were to die, then would you want the medical team to come and bring you back to life? Those are the kinds of really serious conversations that we have to have. But a lot of times, patients in the hospital are going through so much grief, already losing their independence, losing agency . . . life as they knew it is gone now. With a chaplain, they can share how this illness has been impacting them. A lot of times it’s hard for patients to have this kind of very frank conversation with the people closest to them because they’re so invested and so in it with the patients. That’s really where chaplains come in, sitting with them in their struggling to help them articulate and find meaning in the chaos.
JNT: It seems that in practice, a lot of your job is simply listening. But I wonder if there are certain strategic questions you employ to navigate the conversations you’re having with patients and their families?
Joy Netanya Thompson (MAT ’12) is an editor and writer based in the Los Angeles area. Find more of her work at joynetanyathompson.com.
Angela Song is a chaplain in the palliative care department at Providence St. Joseph Hospital in Orange, California.
AS: As chaplains, we try to embody the kind of compassion and the kind of presence that allows a patient to know that they are seen and they are heard in a very real sense. But also, we’re trained to be strategic in our assessment and our screenings to discern where the spiritual pain and the existential pain, might be. We try to help them unpack what this illness has done to their relationship with God, with the divine, and to their relationship with others and themselves. Can I give you an example?
JNT: I’d love an example.
AS: We currently have a patient who had a cardiac arrest in the middle of a conversation with her son. She suddenly went down, and he kind of lost his mind for a second and didn’t know what to do. She’s here now in the hospital with an anoxic brain injury, and she’s very close to being brain dead. At this point, even if she were to be revived, there is no hope that she could return to the person that she was, or to doing all the things she enjoyed in her life.
Three days ago, I met with her son, who is actually the primary decision maker for her. He’s just wracked with guilt because in his mind, he didn’t get there fast enough. He didn’t do CPR fast enough. And as we’re talking about this guilt, it’s opening up so many other spiritual themes in his own life: how he feels about himself, the role that he played in his family, the anger that he’s felt toward his family members for certain things that happened or didn’t happen. I think that all spirituality, in a sense, is about letting go. And I think that in this moment he is careening into the reality that he’s going to have to let her go, but he can’t because of the shame, the guilt that hasn’t been resolved. And so, despite all the medical recommendations—at this point, it’s futile care—we can’t compel the son to make that decision because he is not resolved within himself. He’s holding on to every last straw that he can.
For the past three days, we’ve been really working through what that grief looks like and giving himself permission to feel the anger not only at himself but his anger toward God. His anger at life that it wasn’t supposed to be this way. He feels, “I was supposed to show my mother the fruits of all her labor, everything that she sacrificed, I was supposed to show her what it was all for. But now I’m never going to get that chance.” Really allowing that grief to surface and holding that sacred space for his emotions to emerge, and through careful guiding of the conversation, we reflect with him so that he can speak for the truth for himself.
I asked him, “If your mom knew everything that is happening around this room right now, everything that you are experiencing and that you’re putting on your shoulders, what do you imagine she would say to you?” And he just looked at me. It may have been only 30 seconds, but it felt like time expanded and the deeper truth—not what he’s telling himself, but the truth of God—was able to rise to the surface, and he was able to weep. I think it was the first time since she’s come into the hospital that he was able to truly just cry. And as he’s crying, he’s saying goodbye. And I think that’s the movement: When we can really address the pain going on inside, somehow it rolls into the other decisions that are having to be made.
JNT: That was a beautiful example. When you mentioned the feeling of time expanding, it made me wonder what other kinds of transcendent, spiritual experiences you’ve shared with your patients.
AS: I was just thinking about this patient that I had connected with four or five years ago when I was a chaplain at a trauma hospital. He was young, maybe in his early 40s. He would sleep in the daytime, and he would be completely awake at night and was always playing punk rock or classical music. When I first met him, he said to me, “I’m not religious.” And he was very angry, like, “I don’t want to see you.” He didn’t want anything to do with the palliative care team, except for his nurse and doctor. But, eventually, we had a really incredible breakthrough.
It was gingerly at first. In the beginning, I would just come and listen to his music. We didn’t talk about anything religious or spiritual, but I acknowledged the pain and the distress that he was in. I was with him for around four months and over time, so many layers of his story unfolded. I found out his son had died of the same cancer exactly a year before. And this son was his best friend. And the way that he died was very excruciating, physically excruciating for the son, but also for this patient, his father, who witnessed everything. So he just shut himself off. He had a daughter he loved very much, but because he couldn’t let go of his grief, he couldn’t even acknowledge his daughter whenever she would come to visit him.
Like I said, I spent about four or five months with him at the hospital, so I got to know his family history and how there was a lot of trauma from his past. And he felt that God was never there. The reason why he was so resistant to me as a chaplain was because he hated God. He was actually very, very angry with God.
He was an avid hiker, but he had bone cancer and needed to get his leg amputated, so he hadn’t gone hiking in a long time. But he told me that, even though he’d abandoned a basic faith in a loving God a long time ago, when he felt closest to anything like the divine, or the mystery of life, was when he would ascend a mountaintop on a hike, and he would lay under the stars. And he said, “I would love to feel that feeling again.”
The beauty of palliative care teams is all these disciplines that are working closely—the social worker, the case manager, the doctor. So we collaborated and the night nurse actually rolled his bed out to the beautiful hospital courtyard, and he and his wife and daughter got to spend 30 minutes under the stars. The next day, he said he felt closer to God in that moment than he had in such a long time. And he said, “It was just being silent, looking up at the stars, that felt like prayer to me.” This was maybe about a week or two before he passed.
JNT: That’s a beautiful story. I love how your team helped him connect to what was sacred to him in such a meaningful way. It makes me wonder what it’s been like for you, coming from a Christian faith, to learn how to open up your own understanding about other people’s experiences of spirituality and the divine?
AS: We’re interfaith chaplains in the hospital, so our understanding of spirituality is broad; it’s expansive. I mean, not everyone is religious, but everyone is spiritual in their own way. I think that part of our role is to really remain curious, to figure out what matters most to you. Where do you find your hope in a moment of crisis? What gives you joy? What does peace really look like to you? And to be able to ask these questions that allow people to realize that, “Wow, even though I may not have any kind of religious faith tradition, things matter to me. Things are sacred to me.” And all those things are included in spirituality. So the key for me is to remain curious and to listen deeply for things that are not only spoken but unspoken, and to continue to follow the trail of what seems to give that spark, where do they want to go in these conversations and just follow them there. And usually, you can find out what really matters to a patient very quickly because they feel that they’re really being heard.
Danie Buhuro, executive director and CPE supervisor of Sankofa CPE Center, seeks to expand our imagination of where ministry is done, bringing chaplaincy to new places and contexts.
