Eric: Welcome to the GeriPal Podcast! This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, who do we have with us today? It’s a full house.
Alex: We are delighted to welcome Allison Kestenbaum, who is a Board Certified Chaplain and Certified Pastoral Educator; I need to hear from Allison what that means; and is a Palliative Care Chaplain at UC San Diego and a Sojourns Scholar. Welcome to the GeriPal Podcast, Allison.
Allison: Thanks, so good to be here.
Alex: We’re also delighted to welcome Katy Hyman, who is a Board Certified Chaplain and Director of Palliative Care at Memorial Care Long Beach Medical Center. Welcome to the GeriPal podcast, Katy.
Katy: Thanks so much for having us today. I’m excited.
Alex: And we’re delighted to welcome Paul Galchutt, who is a research chaplain at the University of Minnesota Medical Center, and is also the convener of the Hospice and Palliative Care Spiritual Care Research Network, which we look forward to hearing more about as well. Welcome to GeriPal, Paul.
Paul: Thanks very much. It’s great to be here.
Eric: We’re going to be talking about spiritual care and palliative care. But before we do, we always start off with a song request. Paul, do you have the song request?
Paul: We do. A beloved palliative chaplain colleague suggested Jeff Tweedy’s A Robin or a Wren.
Eric: Who was that colleague? Who’s it coming from?
Paul: Yeah, Denise Hess. She’s the Director of Supportive Care for the Catholic Health Association.
Alex: Great. I love Jeff Tweedy, love his Wilco stuff and his solo stuff. The lyrics to this song are fantastic. When I first heard it; thank you for this suggestion; I didn’t know what he was saying, because he kind of mumbles them in the background. But then when I read the lyrics, “Oh this is beautiful.” So I’m going to try and bring out the lyrics a little more. Here we go.
Alex: We’ll get to the end at the end. I had to split it in half. It’s just a beautiful ending. Wait for it, folks.
Eric: Any idea why that song was picked?
Alex: I could say a little, it talks about reincarnation. It has this beautiful ending of the person who’s saying, “Well, I died and then one day I’ll come back as a robin or a wren and sit outside your window and sing you a song. And you’ll just kind of recognize it, and a tear will slide down your face, and I’ll be alive again. I’ll be back in your memory.” Great song.
Katy: Very chaplain-y kind of song. [laughter]
Eric: Well, let’s talk about this. We’re going to be talking about spirituality in palliative care. Maybe before we talk about the evidence base and what’s our role in this from interprofessional teams; when we say spirituality, what do we actually mean? And how is it different than, let’s say, religiousness or religion?
Allison: One of our favorite questions to engage on. What’s nice about the answer that I’m going to give you is that there actually is a consensus definition from the palliative care community that was come up with by Christina Puchalski is the first author on this.
Allison: But social worker, chaplain, ethicist, physician, all got together back in 2009, and actually came up with a consensus definition of spirituality. We really like it, so we thought that’s a good place to start.
Allison: But even though it comes from the palliative care community, I know not everyone knows it. When I share it with you, you’ll hear actually that religion is not specifically mentioned. So I’ll mention why I think that is.
Allison: But to just give you an overview of that definition, it acknowledges that spirituality is an aspect of humanity, meaning something that we all have, which is what’s suggested there. It can be the way that people seek meaning and purpose, the way they experience connections to themselves, to others. It could be the connection to nature, the sacred, so it really covers a very broad range.
Allison: I think part of the reason why religion is not mentioned in there is because all of those things can be expressed through religion. But one thing that I really do believe is that I think all people are spiritual, but maybe not everyone is religious. Or religion is one particular way of expressing spirituality. So we’re excited to see that represented in that definition.
Eric: Do you think there’s something inherently though religious about the word “spirituality,” as it has the word “spirit” in it? Probably for some folks, maybe some atheists who believe maybe people don’t have spirits or souls, and this is what it is. Thoughts on that?
Katy: Yeah. I mean, I think we’re always going to be limited by language. But I mean, in the United States people who are spiritual but not religious, and atheists are certainly growing. So I expect our language will take a little bit of time to catch up. Yeah, and the roots of chaplaincy are very much grounded in white Protestant Christian practice, and it’s taking some time, I think, for language to catch up with that.
Eric: Yeah. Any notable changes that you’ve seen over the last 10 years in that regard?
Allison: Yes, definitely. I mean, we know statistically the trends are trending toward at least moving away somewhat from specific religious affiliation. More people are expressing their spirituality or religiosity in their own personal way, or ways that were different maybe from 20, 30 years ago.
Allison: And we see that in palliative care. This is a very unique slice that I have, but I work at UC San Diego Health. We are a huge science school, and we have a bunch of oceanographers and engineers around. And they have this incredible spiritual interaction with their scientific mind and their science life.
Allison: When we do spiritual screening, spiritual assessment with them, that’s the kind of things that come out that are related to their legacy, the purpose of their life. So we could hear those things and think, “Well, what does engineering have to do with spiritual care?” But those are the things that are most connected to things like quality of life and values, which we care so much about in palliative care.
Eric: Yeah. And just thinking about, since it seems like a very all-encompassing term, spirituality. And it makes me think when we practically put it in the care that we deliver, how should we assess for it? Because it does seem like even the word could mean a lot of different things to different people. Even that definition you mentioned is very all-encompassing. How do we actually assess for it?
Allison: Great question, because that brings us very much to the practicality, and I think that’s what we love as chaplains. We get to be applied spiritual folks, because there is that opportunity that everything is so immediate in healthcare and in palliative care.
Allison: Yeah, we have a couple different categories that we have in our profession in chaplaincy, where we distinguish between spiritual screening versus spiritual assessment versus spiritual history, which may be a lot more interesting to us than others.
Allison: But I think it is practical in that spiritual screening is something that anybody on the team can do, any discipline, because it’s really just a question. And there are a bunch of good ones out there. Some are much more practical like, what is your spiritual or religious practice?
Allison: And then there’s another great one from Karen Steinhauser and her team, “Are you at peace?” That that can be a spiritual screening. So that’s something anyone can ask, and then that can trigger a chaplain being involved to do what we call assessment.
Allison: For chaplains, it was a really big deal to get to a place where we would make an assessment; we’re not just having an intuitive conversation with someone, though our intuition is a big part of what we do. But that we actually would stake a claim and say, “Okay, we think this is where the person’s spiritual need is.” Right?
Eric: Mm-hmm (affirmative).
Allison: This is where we think their spiritual resources are. And we’re going to work with the team to integrate that to the plan of care. So we’re going to actually not only have an assessment, but we’re going to talk about the specific interventions we’re going to do, and we’re going to name outcomes. What does spiritual healing for this individual look like? And how can we, as a team, help them get there?
Alex: I wonder, as a doctor who serves on a palliative care service, what the limits are? And where this boundary should be for me in assessing spirituality of my patients? Are the bounds individual, much like, say, language fluency is individual? I may have had some training prior, or more experience, or less.
Alex: Or are there some hard and fast lines where you feel like … I wouldn’t really go into asking your patients about their relationship with God because that’s … I don’t know if you’re going to be able to get out of that. Or nuances of arguing or talking about the Book of Job, or why this horrible thing might be happening to you at this time.
Paul: I think you’d be great, allegorically wrestling with Job, Alex. No, but I think you’re right. It’s determinative by the person doing it. And I think all the above that you named, I think would be a lot of … I don’t want to say … it’d be really meaningful to come to rounds some morning and hear that somebody engaged in this 20-minute conversation with a patient about all things like, “Why does God allow suffering?” And led to this big question. Not that I agree with that necessarily, but just that it led to this sitting with the person in the valley of their moment of their lives. I don’t want a clinician beyond a chaplain to feel uncomfortable, however.
Katy: I think of it a little bit, like particularly it would be team specific. But a chaplain can ask somebody, “Are you having pain?” And chaplain can learn about basic pain assessment. Like, “Tell me a little bit about the pain. Is it radiating pain? What makes it better? What makes it worse?” Depending on how much training they’ve had in that assessment. But I am not going to prescribe anybody anything for that.
Katy: So recognizing where I can ask questions and then hand off, I think it’s very similar. If you’re going to ask something that you don’t have an intervention for, then that’s probably your limit. Then also, I think it’s worked out in the context of different teams, and how much comfort people have with transdisciplinary practice, et cetera.
Alex: Right. That’s beautifully said, Katy. And that, I think, is an analogy that will appeal to many of our listeners. Most of whom are not chaplains, though we do have some chaplains who listen. Thank you.
Allison: You’ve got three of them here today.
Alex: Oh, great. Right.
Eric: Can I go back to screening versus spiritual history? What’s the difference again? And where did those tools like the … I think the FICA tool and the other tools; is that a screener? Is that an assessment? Is that a history tool?
Allison: Yeah, technically that’s a history tool. But I actually had a big change of heart around … the FICA tool is amazing. It’s taught everywhere. It’s created by incredible leaders in the field.
Eric: And for our listeners, can you just describe it real quick, if you, if you can?
Allison: Yeah. Does someone have the acronym handy?
Eric: Yeah, I’ll describe it since I pulled it up.FICA is basically a framework; again, I’m not sure; is it a history-
Allison: It’s a history.
Eric: … or assessment? But basically F, Faith belief meaning; I, Importance and influence; C is Community; A is Address and action in care.
Eric: How should I address these issues in healthcare, those types of questions?
Allison: Right. What makes it a history is that we’re asking questions. But the tool doesn’t necessarily guide us in what to do once we get answers. Spiritual assessment should do that.
Allison: But what can be really amazing about spiritual history, especially for non-chaplain providers, is that it actually gives a glimpse into the patient’s life, and helps their humanity come out even more.
Allison: I used to think that FICA was all about the patient, and it is. But I’ve learned, especially over these last couple of years with COVID, where some clinicians were not able to really get to know anything about their patient, because maybe they were in an ICU or not able to communicate. They didn’t have any family visiting.
Allison: But if they could find out some of the FICA things, either from the family or from the patient’s medical record, it gave them more of a glimpse into their whole humanity. So we actually see these spiritual histories being very useful for clinicians.
Allison: The challenge though, is patients can get anxious sometimes when we ask them lots of questions, and don’t tell them why we’re asking them that information. And spirituality and religion can be kind of private. So I think it can be great to ask these questions, but just know what you’re going to do with it once you pull out the info. Yeah.
Paul: I was just going to say, because this comes up a lot. Our naming with the screen and history. For me, it’s just like the history, you borrow that word “story” out of it. It’s just some nice, really interview questions to get the ball rolling. Then the screen is, there’s something bad going on. That’s where we like to know spiritual pain, distress, struggle, those kinds of things. For me, sometimes I’ll offer that for people as a simple way to grasp it.
Alex: Now that you said it, you said “spiritual pain.” Could you give an example of somebody who’s in spiritual pain, for our listeners?
Paul: I hope I’m not jumping ahead on some of these questions. But this is an example of it. It could be a tough decision-making moment with somebody in the ICU, and they feel like they need to carry on and move on with the interventions that may not be comfortable for them, or that they even want. But that somehow they believe God is wanting them to continue to do that. “Why is God wanting me to do this? And why does my religion teach me as such?” So we can have all these moral pieces and existential complexity.
Paul: Dr. Marvin Delgado Guay at MD Anderson has a classic question: Are you experiencing a spiritual pain that’s not physical? Allison, you know it better than I do … I’m not getting that right … because of this recent project we worked on.
Allison: Yeah. The question is, Are you experiencing spiritual pain? Spiritual pain is pain deep in your soul, and it aligns up with … probably a lot of people are familiar with the ESAS, the Edmonton Symptom Assessment Scale. And it’s answered with the same scale, but it’s this question of that different kind of pain.
Alex: Yeah. Thank you.
Eric: So what if it turns up, “Yes, I am. I am feeling that”? Do we just say, “Okay, great, we’ll have the chaplain come by”?
Allison: Well, I’m going to answer this with my systems director hat on, which would be to say, “You should probably go and talk to the Spiritual Care Department in your hospital to find out some of what they would like you to say. What their availability is, and how they would like to be contacted.”
Allison: But assuming that you have done that and you have a good relationship and you know what to do, then yes. I think you can say, “Sounds like there’s a lot of pain here. I’m going to have a colleague of mine, Allison, stop by from our Spiritual Care Department. And I think she can spend some more time talking through this with you.”
Eric: It’s also interesting you didn’t use the word “chaplain.” You said “Spiritual Care Department.” Is that a very thoughtful word choice, or is it interchangeable?
Katy: I’ll speak for myself, but then Allison and Paul, feel free to chime in. “Chaplain” can be pretty loaded a word, and people have connotations with particularly, I think either maybe military or also people coming in from a specific religious perspective. But I’m also in Southern California, so I know that there are other regions of the country where it’s less loaded. I don’t know, Paul, what it’s like for you in Minnesota.
Paul: For me, it’s the classic story. Somebody with the hospice that used to be to our healthcare team tells a story that she went in, did the intake and said, “Yeah, we’ve got all these services and supports, and we have a spiritual care person on the team. That’s great. I’d love to see a spiritual care person. I just don’t want to see a chaplain.”
Paul: This is our conundrum.
Paul: And the palliative team I used to work on, it was asking them to take a read on the people that they just got to know in this hour-long, I’m guessing, intake they just had at the bedside. But they got to, I don’t know, get the ins and outs and ups and downs.
Eric: Yeah. I think one of the common things when I ask, “Oh, would you like to see a chaplain?” Often, immediate answer is, “No.” But if we’re going in there together with our healthcare chaplain, nobody bats an eye.
Eric: Also, we don’t ask, “Is it okay if our social worker sees you? Or if our palliative care pharmacist sees you?” It’s, “Oh yeah, we’re going to have all the rest of our interprofessional team members see you. These are their names.”
Alex: Though we do sometimes … just a little pushback to my co-host Eric-
Eric: Push me back, Alex.
Alex: We sometimes say, “Would it be okay if the psychologist came to see you?” And there’s sometimes pushback around that. And sometimes when they’re referring to palliative care, they ask, “Would it be okay if palliative care came to see you?” And the patients may say, “No.” Anyway, continue on…
Katy: I think there’s a lot of parallels here between referrals to palliative care and referrals to spiritual care. That at least in our hospital, we try to get our referring clinicians to say, “We have a great team here. They’re called the Palliative Care Team. They’re a great support. I’m going to have of them come by and see you.” Not, “Are you okay?” Or, “Don’t worry, Palliative Care is coming.”
Katy: So in the same way, I think doing more of a tell than an ask. And that involves a lot of trust in the chaplain and the Spiritual Care Department that you’re referring to. But I think letting patients know, “This is a good person, and I think they can help you.” Because otherwise, they’re going to make all kinds of assumptions about what chaplains do.
Allison: I think that’s a really good point, Katy, what you said about know what is offered at your institution. Because there are still some institutions that when they say “chaplain,” they mean a community clergy person who might be a great community clergy person, might be wonderful in their giving sermons and things like that.
Allison: But to their credit, they’ve just never been in a palliative care setting; they’ve never been in healthcare. And that’s going to be a very different situation than someone who has this clinical pastoral education training. Who’s even maybe board certified, who knows how to assess very quickly when they get into the room. Even if the healthcare provider hasn’t told the patient that they’re coming in, we know how to assess and screen very quickly if our presence is causing more harm than good, and know how to deal with that.
Paul: Say more, Allison, about being an educator.
Alex: Oh yeah, yeah. What is a certified pastoral educator?
Allison: Right. So turns out even chaplains or religious or spiritual leaders are not born knowing how to give spiritual and pastoral care.
Allison: Especially in healthcare. I know, right? Yeah. I mean, there might be a gene, but we haven’t found it yet. Just like any other discipline, there’s academic training that chaplains and spiritual caregivers go through; depends on their spiritual or religious background.
Allison: But then there’s a clinical training that we all go through. It’s 1600 hours total. And three-quarters of that is actually clinical, where the learners are functioning in the clinical environment as chaplains, but getting a lot of close supervision. And it’s all about reflective practice. We learn things about spiritual assessment, how to recognize different kinds of grief, and how to run a family meeting, very concrete skills.
Allison: But I as a chaplain or a spiritual counselor, I’m using myself very much in the relationship, in the sense that I’m being curious about the person’s story. I’m empathizing with them. I’m trying to draw connections to their values and their maybe spiritual religious beliefs, if they have them.
Allison: So we spend these 1600 hours encountering things in the clinical environment that we maybe didn’t realize we had an issue with, then we realized we might need some help around it. And then we get that supervision in real time, or pretty close to it, from our educator and from peers, because there’s always a peer cohort. So it really builds in that reflective practice.
Eric: How much palliative care is part of that training? And is there a need for further subspecialization of chaplains who are really focused, let’s say, integrated on the Palliative Care Team?
Allison: Funny you mentioned that; that’s what I’ve been working on the last couple years. And really interested in hearing what Katy and Paul have to say about that, too, from the research perspective and the workforce perspective.
Allison: But yeah, a lot of clinical pastoral education programs have students go through the palliative care piece, if at all, towards the end. I think we’re maybe trying to protect our relationships with palliative care teams, and we don’t want to have the newest learners. I’m not sure. Or there are other reasons why that could be. That we want these learners to have more skills under their belt.
Allison: We actually expose them right away at UCSD; it’s part of the entry-level internship that they could do. Because we just feel like palliative care should just be care. It’s like one of our closest cousins in spiritual care; we’re actually recognized as a key component on the Palliative Care Team. So we just think where better to help fledgling chaplain learners see what the potential of their role could be?
Allison: There’s some different philosophy about that. And some of what’s called CPE programs that are working on some specialty palliative care curriculum.
Katy: Well, and a shoutout plug to Allison, who was a Cambia Sojourns Scholar. And as part of her project anyway, working on developing particularly palliative care curriculum in the context of clinical pastoral education. So that’s the part that I’ll brag on, Allison, since she won’t say it for herself.
Katy: Also, Denise Hess would like us very much to mention that there is a specialty certification. So there’s board certification, which chaplains can apply for. And then there is a specialty certification on top of that in Hospice and Palliative Care.
Paul: And folks can take a … this is not meant to be a commercial, but the California State University course enables folks to take a step toward that. I should COI reveal that I’m an instructor for that as well.
Eric: I guess a question to really any of you who are willing to answer, is when you think about the current state of training for most chaplains, what do you think is missing the most as far as palliative care skills?
Allison: I think one thing that I would love to see more of is the stepping up and taking leadership. This is something that exists, but I think is being built into the curriculum more. In terms of leading family meetings, truly leading family meetings and stepping out to do that. I’m also faculty for VitalTalk and-
Alex: Oh, great.
Allison: … other than delivering new information about what the scan says for that first time it’s ever said, there’s not anything that a chaplain can do than remap the mnemonic for goals of care conversations within the VitalTalk curriculum.
Allison: Some of that’s a limitation of the training. And a lot of times that’s more limitation, I think, of the teams and the institutions where the chaplains are at, who don’t see chaplains as doing that. So it’s a challenge in both directions.
Alex: Yeah. Katy, you mentioned you are the Director of Palliative Care at your medical center. Could you tell us a little bit about your role at your particular institution at leading teams and in clinical work?
Katy: Yeah, I oversee our Inpatient Palliative Care Team, and we have a growing outpatient presence. I do team maintaining, I interface … I’m the admin side of our leadership dyad. I also do education. I do VitalTalk training throughout our system in Southern California. So, help working with our Family Medicine Residency Program and make sure that our team stays healthy, and that our relationships throughout the hospital with all of our different constituents, clinical and non, stay healthy and robust.
Katy: There are not many of us who are chaplains and also oversee palliative care programs. I think it’s a funny little niche.
Alex: Yeah. When I think about the moments where the chaplains have led the conversation and really stepped up, the one that comes to mind the most; some of the most powerful experiences I’ve had in clinical practice; are after the patient has died and there’s a family request the chaplain come.
Alex: And the chaplain comes, and there’s just this outpouring of emotion and grief that is led by the chaplain often, or channeled or navigated by the chaplain. And that incredibly strong emotion at such a delicate time, and the way that the chaplains have navigated that is just so deeply uncomfortable for most doctors. Right? And outside of their comfort zone.
Alex: And yet the chaplains, this is a key part of what they’ve always done. Right? And that’s the key part of all of their training, as you’re saying; so incredibly powerful. I don’t really have a question in there, but it’s certainly one place where they do already take leadership.
Allison: Yeah. Yeah. I mean, I think that’s definitely a place where chaplains shine. I also would advocate that. I think that that sort of frequency, it can really palpably feel after there’s been a death, often. I think that’s always there in serious illness.
Allison: It’s just sometimes there’s some distractions, and other times you see actually if the chaplain is called much, much earlier … I do a lot of work in outpatient palliative care, so we see patients for a long time. And you think so far upstream a chaplain wouldn’t be necessary.
Allison: But I walk through the door and all of a sudden, there’s this whole other frequency that gets tuned into just because the patient and the family say, “Oh, the chaplain’s here. So I guess it’s okay for me to talk about this.” I think sometimes that permission is only given closer to end of life, and I think we can really help in the whole spectrum.
Alex: Yeah. I completely agree. That’s the other place where I’ve seen chaplains take a leading role. The chaplains we’ve worked with have had really long relationships with patients. And often, maybe they know the patients better than we know the patients because we rotate in and out, in and out. And the chaplains are often all on service much more frequently.
Alex: That they develop these longitudinal relationships with patients that we aren’t privy to. And they know about the core struggle that the patient’s facing in the setting of serious illness, in that way that it’s threatening their sense of identity and personhood and meaning, in a way that we maybe haven’t assessed or aren’t familiar with.
Alex: So I absolutely agree. That’s another place where I’ve seen chaplains take the leading role. Yeah.
Eric: So I mean, going back to … is it okay if we move away from chaplaincy to the rest of the interprofessional team? I think it was Holly Prigerson’s study, coping with cancer study, looking at spiritual and religious support by the medical team.
Eric: If I remember correctly, we don’t exactly know what people said or meant when they said they felt supported spiritually by the medical team. But when they felt more supported, they had greater odds of receiving hospice care, and they were less likely to receive aggressive end-of-life care.
Eric: Which is kind of opposite, if you look at people who use positive religious coping. It’s actually interesting that they actually use more end-of-life care and less hospice care if they have that. I’m just wondering: What does it mean to be spiritually supported by the medical team?
Paul: It’s a great study, by the way. That whole crowd with Holly Prigerson and Tracy Balboni, Michael Balboni, Andrea Phelps on it. Yeah, that was some amazing data got cranked out of that world.
Paul: You’re right. We would’ve loved it if they could stratify the chaplain out of that data set, and somehow say that we stood out as a variable. I know we didn’t, but it’s still very exciting that the team perceptively, as you said, had these amazing outcomes when they were involved.
Paul: And yeah. This genuine sense of being cared for, I suppose, is the sense; the meaning, connection and purpose tied with that definition Allison mentioned before, I think, is critical to that. But people attend to their story, the struggles that they’re evidencing, that they name that we are able to say, we want to sit with that. We care about that.
Paul: I think palliative people are drawn to the story, period. Physician, PA, NP, clinical social worker. We all love to swim in that sea of values. So I think there’s a nice congealing. I had my most fun clinically when I got to be on the Palliative Care Team for 10 years because of that, I think, kinship among interprofessionals.
Katy: The other thing that I think I’d add to what you said, Paul, is in terms of the other members of the team and how a patient might experience that. I think a lot of it has to do with when it comes up from the patient.
Katy: If the patient just says something like, “Well, we’re going to leave it in God’s hands,” or, “I’m going to need to pray on this,” or-
Eric: “I’m hoping for a miracle.”
Katy: … “I’m hoping for a miracle.” Yep. “I feel like the universe is just getting back at me.” There’s a moment when I think people on the team can either lean into that, or pull way back from that and say something like, “Yes, well, how is your belly pain?” And so-
Eric: You must hang around me a lot.
Katy: … for patients to feel cared for spiritually and existentially, when they bring up those concerns and they are, as Allison astutely said, I think that frequency is there all the time.
Katy: If the rest of the team can develop some comfort and some … and I would turn to your chaplains, spiritual care providers at your institution for help with that, too. But to be able to receive that, sit in that for a minute, and then appropriately refer.
Eric: Let’s go to the, “I think the universe is just getting back at me.” What would be some options as far as a response that isn’t, “Oh, let’s talk about your belly pain”?
Katy: “Tell me more about that.” All of these great skills and curiosity; curious communication that palliative care members have, and pride themselves on, for the most part. That you can use that for anything, even spiritual talk.
Eric: Yeah. I’m going to ask you a couple other go-to communication tips about addressing this. I think one of them also is not try to fix it right away. “No, the universe is not trying to harm you.” But I wonder, if I ask somebody … let’s just go back to the FICA. Part of the F is asking about Faith belief and meaning. Do you consider yourself spiritual or religious? And they say, “No.” All right, I can end the conversation there. But are there tips to go deeper potentially? … Paul?
Paul: Yeah, well, I remember from listening to a previous podcast, you talked about Dr. Ken Covinsky; he’s been a part of this. I would recognize, I remember before part of his FICA, I’d say, “You’re a longstanding suffering Cubs fan.” I would probably invite a moment about Steve Bartman, and to commiserate with him a little bit about that, to sit with him in that suffering. I mean, all joking aside, it’s trying to find that connection point.
Paul: Or even recalling back, “I thought I read a note somewhere that you had said this to the chaplain, or finding that point where your humanity means so much to me.” That isn’t maybe necessarily explicitly said, but it’s the sense that I’m in this chair. I’m not going to go anywhere. And what is happening to you means a lot to this moment.
Allison: Yeah. Except that we know that you do have to go somewhere. I mean, we do, but especially I think physicians, nursing, all the other disciplines.
Allison: I think one of the things is in some cases we have the time. Our time is set aside for this, and that if you could start the conversation, then use some good curiosity by asking them to tell you more. Then it’s going to be setting like a healthy limit of saying, “I have a certain amount of time today. This is the amount of time I have,” so that you can manage their expectations. Then that could be a good way to pass the baton and let them know there’s a whole specialist on our team that works exactly with the kinds of things you’re telling me today.
Alex: Can I ask about a couple others?
Eric: Go ahead, Alex.
Alex: I want to see if you have any pointers for the clinicians who are listening. Some of them may be on teams that have no chaplain. And many of them may be on teams that work with chaplaincy in their medical center, but they’re not specifically palliative care–trained chaplains.
Alex: What thoughts from you, any initial thoughts on the patient says that they believe in miracles, hoping for a miracle, or family. This comes up quite frequently. Any initial thoughts on how to approach that?
Allison: Well, there’s the really great AMEN protocol that was published recently. You’ll have to help me remember all of the acronym, but it’s ALIGN, which is sort of a critical palliative care skill, anyway, right?
Alex: Mm-hmm (affirmative).
Allison: Is to maintain alignment as you’re assessing people’s values and learning about them, maintaining alignment. So if somebody says early on, “Well, I realize you say that she’s lost almost all brain function, but I just don’t believe that.” You can’t really argue with somebody about that. So maintaining alignment and leaning into the relationship, and…
Katy: It’s the same meeting them where they’re at.
Allison: Meeting them where they’re at. Exactly.
Paul: It’s Affirm, Meet, Educate, No matter what.
Allison: Thank you.
Alex: N is no matter what.
Allison: Yeah. I just learned this a few weeks ago, and it’s become one of my favorite ways to respond to the miracle piece. All credit, it’s evidently from Bob Arnold. If somebody says, “Well, we’re just hoping for a miracle,” is to say, “It must be really hard to be in a place where you need a miracle.”
Alex: That’s good.
Allison: But I love talking about miracles, because I think it’s one of the most misunderstood words in spiritual care. I’d say over the past, maybe six or seven years, all of a sudden, a bunch of what they called taxonomies came out about miracles in healthcare. And the upshot of that is that there are those miracles that are harmless, and they don’t really impact decision making, even. In fact, if anything, they may even support.
Allison: And then there are the miracles that I think a lot of providers maybe even fear that could … not saying too much or judging too much about a person’s theology, but they could even be a little bit harmful for the person. So this idea that not all miracles are created the same. And again, that curiosity out what kind of miracle is this and how this is functioning for the patient gives us a lot of guidance.
Eric: Yeah, I love the question, “What does a miracle look like to you? What would that look like?” Because we’ve had patients who say, “Oh, the miracle would be that I get a die at home.”
Eric: Hey, that’s really different than-
Allison: We can do that. Yeah.
Eric: I was just thinking in my head, what you were trying to say when you said you were hoping for a miracle.
Alex: Can I ask also … This comes up often. “Will you pray with me, Doctor?” Thoughts on how we might respond to that? Particularly for doctors who may be atheist or of a different religion than the patient who’s asking them to pray with them.
Allison: … Paul, did you want to jump in on this one?
Paul: Oh, thanks. No, I didn’t. This is a …
Alex: … hot potato.
Allison: Yeah. I’m not going to necessarily change hearts and minds on this, because I understand there’s a deep history with people’s own sense of either feeling close to prayer, or feeling very alienated by it.
Allison: But I just always think about how prayer is really just like “please” or “thank you.” It could be expressing the depths of your heart and soul. But often it’s just sort of a “please” or “thank you.” Or a praising, expressing appreciation or gratitude. And I think anyone could do that, whatever their background is.
Allison: So it’s a question of, I guess, for the medical provider, does it feel so inauthentic that that’s going to create a wedge with the patient? Or can the medical provider do a little interpretation inside their own mind and say, “Oh, I know what the person’s saying for ‘prayer’ is they’re really just wanting me to engage in that sort of human interaction.”
Alex: Yeah. I really like that phrasing, Allison. Paul, you were going to say something?
Paul: No, there was a great fast fact on this that I really like. But I also just want to name. I heard physicians tell me … they don’t say this explicitly, they’ll say this to me later. “I don’t believe in what they’re saying, but I recognize it’s important for them.”
Paul: And I’ll say, “I’ll be in the room. Your way of understanding God or the divine, that’s important to me. I want to support that, so I’m going to respect that and stay here. And I’ll be by your side while you do that.”
Eric: Yeah. I got a question for you, Paul. As we think about these big questions that are coming up, whether it be miracles or how to respond; or even thinking about, what does it mean to be supported spiritually by your medical team? There’s a lot of need for palliative care research. Is this a researchable topic? Or any of these, can we address them through research?
Paul: I’m so thankful you asked that. Yes. We are so thankful to some of the people who have led the way here that are really putting a lens on this which is really important to all of us.
Paul: Yes, there’s some really good outcome-based studies that out there. We’re hoping to keep collecting all these pilot studies. And hopefully the NIH will see us some day to say, “We’re going to give you a big pile of money to research this some more.”
Paul: And I’d love to have people come and join us in the Hospice Palliative Spiritual Care Research Network with Transforming Chaplaincy. It’s free. There’s almost 700 of us at this point, and people who care about what the evidence can mean to inform or apply to my work.
Katy: It’s a great community, just to put in a plug for it. Paul does a great job of building a great community there.
Eric: If we wanted to join, where would we go?
Paul: Well, I noticed sometimes on your website that you have links. We do have a link and it functions like a key to the front door, because we keep them closed so that we don’t have any advertising. It’s just a place to explore, inform, coordinate, connect with other folks who care about it. And it’s not just for chaplains, spiritual care folk. We have physicians, health services, researchers, other people that are part of it.
Eric: Great. We’ll have a link to that.
Eric: I also wonder in our last couple of minutes, if I can ask each of you, if you had a magic wand; you can have healthcare practitioners with teams do one thing when it comes to addressing spiritual care needs of patients and family members, what would that magic wand do for you? Allison, I’m going to turn to you first.
Allison: Yeah. I would want every single provider to attend to their own spiritual health in a way that means something to them. Because I just really believe that if all of our palliative care providers are at their best and their most integrated and grounded, they’re just going to be in such a better position to be able to be present to patients for themselves, and make the connections to a chaplain or to other specialists.
Eric: Great. Paul?
Paul: My favorite definition for religion is it means being gripped by a story. Finding those places of connection, so we do find those sincere moments of meaning, value and transcendence. Not just for that patient and not connected even to God, but you know, a 2016 World Series, for example.
Eric: Yeah. Go back to Ken right there. Katy, what you got for me?
Katy: I’ll be real practical and say, if I had a magic wand, I would want healthcare organizations to acknowledge and invest in board-certified chaplains. To acknowledge that this is a specialization, and it takes special training and you should pay professionals accordingly.
Alex: Hear, hear. Completely agree.
Eric: Yeah. I think it’s fascinating too. Going back to the coping with cancer study, supporting … I mean, the part of the reason palliative care has grown so much is that there was a business case around it. I think from coping with cancer, that there was an acknowledgement that addressing spiritual needs for a healthcare system, it just doesn’t make good spiritual and medical sense. It also helps potentially come from a business case as well.
Eric: All right Alex, any other questions from your end? I know we’re running out of time.
Alex: No, I’m good. A little more Jeff Tweedy?
Eric: A little more Jeff Tweedy.
Alex: Jeff Tweedy. All right. We get to hear the end of the song. Here we go. Actually starts out with the, “We’re at the end.”
Alex: (singing) Oh, I got to find the first note. (singing) Okay, here we go. Here we go. (singing)
Eric: Allison, Katy, Paul, big thank you for joining us on the GeriPal Podcast. It’s been absolutely fabulous. And we will have a link to the network, too, on our show notes.
Katy: Thank you guys so much. This has really been fun.
Eric: Thank you. As always, Archstone Foundation, for your continued support, and to all of our listeners. Thank you for supporting the GeriPal Podcast.
Eric: Goodbye everyone.