Understanding the Role of Chaplains in Cancer Care, with Jane Jeuland, MDiv

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses. In this podcast, the Reverend Jane Jeuland discusses what people with cancer should know about the role of chaplains in cancer care, including how chaplains are trained, the type of support they can provide for people with cancer and their family members and caregivers, and how someone with cancer can ask for spiritual support from their health care team. Ms. Jeuland received her Masters of Divinity from Yale Divinity School. She is an ordained Episcopal priest. She received her chaplaincy training from Yale New Haven Hospital and is a board-certified chaplain. She has served as an oncology chaplain and was the first palliative care chaplain at Yale New Haven Hospital. She has no relevant relationships to disclose.  Jane Jeuland: Hi, my name is Jane Jeuland, and I am the palliative care clinic chaplain at Yale New Haven Hospital. I'm here today to talk a little bit about what I do at Yale New Haven Hospital, and also, what is a chaplain? What is it that we offer and provide? How are we trained? And some other questions that people have for us as chaplains. So I'll start by just describing a little bit about what I do at Yale New Haven Hospital in my role. In addition to seeing patients in our clinic, I visit with patients one-on-one through video platforms, phone, and I also visit with patients in person for scheduled appointments. And in those appointments, we get to know each other, we build a rapport and a relationship. And I help people process how they make meaning, find purpose and belonging in their lives, and how that is impacting their cancer care, but also how their cancer is really impacting their meaning, purpose, and belonging. In addition to those individual meetings, I also visit with patients in group settings. I host several groups over Zoom where patients get to talk to one another and share deeply and support each other. And last but certainly not least, I also have started a podcast with my patients called In the Midst of It All, which you can find on Apple Podcasts and Spotify. And in that podcast, patients share their stories that they've written about their lives, about their cancer journey, and about their spirituality, and how that has helped them through all that they're going through. So, how do chaplains get trained? I think this is one thing that people ask me quite a bit. What is your training like? Our training is pretty extensive. We need to have a 3-year Master's degree, typically a degree of divinity. And then after that, we have a year of training called Clinical Pastoral Education, CPE for short. And in that year of training, we are with a cohort of about 4 to 5 other chaplains in training. And we are supervised by a highly trained supervisor as well who has quite an extensive and long process to get certified to do that. And what our supervisors do is they help us really go out, visit with patients, and then reflect on those visits. We do things called “verbatims.” So what is a verbatim? When we write up a verbatim, we're writing up word for word an interaction that we have with a patient. And obviously, we will keep the patient confidential. But we do this with our group and with our supervisor to really kind of drill down and see where are the places that we are inserting ourselves, our own beliefs, our own needs, and how can we really better meet the patient where they are? We talk a lot about positive use of self so that we become really aware of our own self in the midst of our interaction with patients. And over the course of the year, we really learn how to focus on the patient's spirituality, their beliefs, their values, what they need in that moment. And we're all about helping people discover their spirituality and their faith. I think sometimes a lot of people think that we might be coming in to convert someone or to make them believe a certain belief system or a certain religion. But actually, we're really here to help any patient and caregiver really figure out what it is that they believe, and how that's impacting their cancer care or how their cancer is impacting their beliefs. So that means that we do visit with people of all different faiths. We visit with people who are atheists and agnostic as well. And really, again, just try to help people discover, what is that value that you have? What are your beliefs? Where do you find meaning, purpose, and belonging? And so what are some things that come up as we meet with patients? I, again, work in palliative care in the clinic settings. I'm outpatient. But a lot of chaplains work inpatient in a variety of settings. And so you'll have chaplains in a medical intensive care unit (ICU), or you'll have a chaplain in an infusion suite or on a floor as well. And so we see patients at all different stages. We see patients who are just newly diagnosed and have a cancer that's highly treatable. We see patients who are doing really, really well on their treatments. And we also see patients who are starting to kind of struggle with lots of symptoms, pain through sometimes months or years of cancer treatments. And then on the other end of this spectrum, we see patients who are very advanced in their cancer, have a terminal diagnosis, and we really see them through all that that entails, the outpatient visits as well as the inpatient, and even as someone comes to the end of their lives. And so what can come up in our meetings as I meet with patients? When someone's diagnosed with a terminal diagnosis, there is a lot of discussion about fear of dying, what happens in the process of dying, and then also, of course, what happens after we die? What is there after we die? Is there anything after we die? Or what is the afterlife like? And so often, again, I try to help people really reflect on what they may think the afterlife is like, if there is one. And then we have rich discussions around that. For kind of that big question of what happens as we're dying, that's when I like to pull in other members of the team. But certainly, chaplains can help process that as well. We also really do help people articulate their thoughts about the divine and whatever name they give to the divine. And often, what I hear in my appointments is not so much, “Is the divine as God giving me this cancer?” but, “Why would God allow it?” So as I talk with folks, folks will say, "I really believe in a loving God and a God that heals and a God that helps us. Why would a God like that allow me to have this cancer? Why would God allow my loved one to have this cancer and for their lives to be taken far, far too soon?" And for that, it's a tricky one. We, as chaplains, don't have a pill that we can give you and send you home and say, "OK, here's your prescription. Take that, and you'll get all the answers to why would God allow this?" So it's really a process of talking through this. It's a process of kind of discovering a little bit more about what we believe God is, what the patient believes about God, and God's character in the midst of it all. And it's also just sitting in the mystery of it that we don't know. We don't know why a loving God would allow this, why a God that heals would heal some people and not others, why a God who heals would heal at this point in your life, and then not at a different point in your life, and why this happens at all. And so chaplains don't rush quick to give advice. We allow sitting in that grief, in that suffering, in the sorrow. But then again, as we talk about who is God for this person, I also like to help people see, OK, if God isn't healing right now, if we can't understand why God is allowing this to happen, where is God in the midst of it? And this is what I love about my job so much is that I hear from such a variety of faiths and people of different values and spiritualities, how they do see the divine working in their lives. And so for some, "I have a lot of pain, but I know that God is with me, and I don't feel alone in this." Or, "I was feeling grief and loss over a loved one and wondering what my afterlife's going to be like as I face the end of my life and I was having this turmoil. And all of a sudden, I felt this deep, deep, deep peace wash over me. And I feel like that might be God." Or for someone who maybe doesn't have a particular religion, they may say, "I know that the love of my family and friends is so powerful. It's helping me through this. It's getting me through the dark times. And I know that that is what holds us together. And it's more than just what we can see and taste and feel, that that love is something greater and bigger." So it's really rich conversations like that that I get to have. I think also some other topics that come up is cancer is grueling. Cancer, it can be long. And there are things, people talk about scan anxiety. Of course, the side effects and physical pain. I hear a lot about insurance and how that's just so difficult and such a struggle to get on the phone, talk about insurance when time is so precious and so short. And for others who are healing from cancer, it sometimes is a lot of conversation about, "Well, how do I get back to life? And I used to do this amazing job, but I don't think that I can do that anymore. I don't have the stamina. I don't know how I would be able to do that job." And so I help people process that a lot. And again, that goes back to how do we find purpose in life, that meaning, purpose, belonging. And a lot of us find our purpose in work, in what we do. And so chaplains can help people through topics like that as well. And for survivors, we're always so happy in our palliative care clinic to help people heal. A lot of people think palliative care is just end of life. It is not. I have a lot of survivors I meet with, and they'll talk about kind of always looking over their shoulder. Is it going to come back? And finding a way to give back and to help other patients. And that is something I really love helping people with is, how do we give back? What are some ways to help others after I've had cancer? How can I help people? And so I have to say, I've been really, really privileged in my work as I meet with patients and individually in groups and help them write their stories and read their stories and interview on the podcast. I've just been so, so struck by all of the beauty, the resilience, the strength that I hear, the really depth and the richness of people's spirituality as they go through cancer care and really do some hard work to unpack and process all that's going on. And some of the common themes that I've heard is people will talk about how cancer has completely changed their perspective. And so people will talk about how before they had cancer, they were focused on their wonderful job, but also the pay and making sure they get ahead and can have stuff, that newest car or that bigger home. And when they have come through cancer and all that that entails, they start to think, "Gosh, you know what? I like those things, but what's much more important is the people that are right in front of me. It's the things that are free. It's time. It's talking with a loved one. It's really sharing deeply what's on your heart and mind, knowing that time is precious." And so I really am so struck by some of the things that people will share with me about their loved ones, their caregivers. If you are a caregiver, you know that you are loved, and that everything you're doing is really helpful and so, so appreciated, and that the time that you spend together and the things that you're able to share is so important. It doesn't have to be a big trip or people think about bucket list things, and it doesn't have to be all that. It's sometimes just that conversation over coffee or as you're going to sleep at night, those words that are shared are so important. And so people's perspectives, I think, really do shift and change and deepen. And people also find God in the midst of everything that they're going through. I had a patient who heard stories on the podcast and said, "I really want to write my own." So we worked together. And we talked a lot about her faith, and she wasn't really sure what to believe. She had had a hard time growing up in terms of her spirituality. And through her writing, and also through her cancer journey, she was able to really articulate her sense of God as a loving companion to give her peace, not one that's punishing, but a God that's loving. And now, as she comes to the end of her life, she's really finding a great more deal of peace, thinking about God and knowing that God is with her. I think as I share stories like these, though, I'm always so mindful, too, that I think in our culture, we think a lot about things being 5 easy steps. You can do this, and you can get better, and you can find insight and meaning in 5 easy steps. And it's really not that. It's really a process. And so as you hear stories from other cancer patients who may be in that place of peace and accepting and belonging and you're not there, also know that they were not there at a certain point and that it is a process, and it does take time. And so, again, that's what chaplains are really here for. We're here to help unpack a lot of that, to help people process that. And so you might be actually wondering, "You know what? I am going through a lot of cancer care here where I am, and I really would actually like to talk to a chaplain. How do I do that?" So the best way is to simply ask for a chaplain. We're most often called chaplains, but sometimes we're called spiritual counselors, spiritual care providers. So maybe a different term where you're located. But you can ask a nurse, your oncologist, anyone on the team, your social worker, to contact a chaplain. There are different levels of care in different settings. So you may have a chaplain in an outpatient setting, but maybe not. And so most likely, most hospitals have inpatient chaplains. If you are outpatient, though, and you really want to talk to a chaplain, I still encourage you to ask for one. And in that case, call the spiritual care or chaplaincy department directly, and you should be able to do that through your information line in your hospital. But in the hospital, for the most part, the hospitals have inpatient chaplains. Many have 24/7 on-call chaplains. And so always don't hesitate to ask the nurse, and we're happy to come by. We also do provide support for families. And so this is something that we do quite often, especially in the inpatient setting, in an ICU setting, at those times when decisions are being made. What should we do? What we often call in our hospital setting “goals of care” conversations. What is the goal of care here? Are we going to continue with aggressive interventions? Are we going to start to move to aggressive comfort care? And so chaplains help talk through that as well. So you can always call or ask for a chaplain when you're inpatient, certainly when those decisions are being made. And we're there for you as a patient, but again, we're also there for your caregivers, your loved ones. And in those settings, we're often meeting with families sometimes outside of the room even. And we help your loved ones process as well. Just like I've mentioned, all the other things that I help patients process, we also help caregivers with a lot of those topics. In addition, of course, for a caregiver, we sit with them in the pain and the suffering and the loss and the anxiety, and talk through their ways that they find meaning, purpose, and belonging, and how they're processing all that's going on with their loved one, who's the patient. I've heard from more than one patient that they say, "I feel like as hard as cancer is, it's easier on me than it is on my loved one. I hate to see what they're going through. I sometimes feel like a burden." But whenever I talk to a caregiver about that, they always say, "Absolutely not. You're not a burden. I wouldn't want to be anywhere else in the world." If they're sitting there in the ICU, long hours, surviving on coffee, very little sleep, lots of interruptions, sleeping in a chair beside your bed. Every single time, those caregivers will say, "I would not want to be anywhere else in the world. I want to be here. This is what I want to be doing." If you're the patient, feeling like a burden, know that more often than not, your loved one is really wanting to do what they're doing. But caregiver burnout is real, too, especially if your care is going on for a long, long time. And so chaplains can help caregivers process that burden. And we also work with the team, sometimes social workers and others to find support systems so that if they need help, so that they can just have a moment to themselves, go for a walk, that we can help them think about resources that may be their faith community, their church, their synagogue, their mosque, their faith community can come and help give that relief or that respite for them, but also other resources in the hospital. So you may have an integrative medicine component. So I hope that you've been able to learn a little bit more about chaplains, about how we're trained, about what we typically hear from patients, and what we can provide support around. How we also support caregivers. We are inpatient, we are outpatient, we are 24/7 most often, and how you can get in touch with a chaplain. I really encourage you to reach out to a chaplain. We're always happy to help. It's what we're here to do. So thank you so much for having me on the podcast today. It was really a delight to be here. And I hope you have peace. I hope that you find strength, meaning, purpose, and belonging in the midst of it all. ASCO: Thank you, Ms. Jeuland. Learn more about the role of chaplains at www.cancer.net/palliative. Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care. And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology. Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.