ASCO In the Community in Sudbury, Massachusetts, with Colin D. Weekes, MD, PhD and the Reverend Joel B. Guillemette

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 world’s leading professional organization for doctors who care for people with cancer. 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. 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 the data described here may change as research progresses. ASCO President Dr. Monica Bertagnolli has chosen “Caring for every patient. Learning from every patient,” as her presidential theme. Putting actions to words, from 2018 to 2019, she is hosting a series of ASCO Presidential Community Town Halls with local groups across the United States to hear from patients, providers, and the general public about real-world barriers to quality cancer care and to talk about ways to provide the best care to every person diagnosed with cancer. In today’s podcast, Dr. Colin Weekes and the Reverend Joel Guillemette discuss the recent town hall event they hosted at the Sudbury United Methodist Church in Sudbury, Massachusetts on September 10. They discuss the most important issues in cancer care faced by members of this community, and ways that these kind of community events can support people with cancer and address these issues. Dr. Weekes is director of Medical Oncology Research for Pancreatic Cancer at Massachusetts General Hospital. Pastor Joel is the Senior Pastor at the Sudbury United Methodist Church. ASCO would like to thank Dr. Weekes and Pastor Joel for discussing this topic. Dr. Weekes: Hi, Pastor Joel. I am Colin Weekes, one of the medical oncologists at Mass General Hospital and a member of ASCO. Would you take this moment to introduce yourself, sir? Pastor Joel Guillemette: I'm Joel Guillemette. I'm the United Methodist pastor in Sudbury, Massachusetts. Dr. Weekes: And I'd like to thank you for agreeing to participate in this podcast and really thank you for allowing us, ASCO, to come to your church and do what we've called the Cancer 101 Town Hall meeting at your church. And I was wondering if you could just take a little bit of time to talk about what you thought the impact of that event was, and why you thought that was important for us to come and talk to your parishioners? Pastor Joel Guillemette: Well, the way I remember how the meeting began, Colin, you had a session in Dorchester, Massachusetts, with the Greenwood Memorial UMC, our sister church. And they were very excited about what happened in their conversation with you and recommended to us that we do something like that here in Sudbury, which is what? 20, 25 miles away. So our Health Ministries team had worked on an invitation to you and to the community. We were gratified by the number of people who came from our own congregation. We didn't see anybody that we would have identified as somebody from the wider community, but it was a good opportunity to talk, I think, about what the expectations of a group of people in an affluent suburb of Boston might be thinking when they hear a cancer diagnosis and begin to process all of that with you, and Dr. Bertagnolli who was also quite helpful in terms of representing some of the dos and don'ts of oncological practice here in the Boston area. Dr. Weekes: From our perspective, I thought it was really exciting to be able to engage the community and start to talk about cancer from the perspective of the patient, which is something that I don't often get to do, given that most of the time my interaction with patients is in a clinic space. We're talking about sort of treatment and how do we proceed with the issue at hand. So for me, it was really interesting to just sort of hear the perspective of the patients and things that maybe we could do a little bit better in terms of communication, and trying to help patients organize their thoughts around how to manage such a problem. Pastor Joel Guillemette: What did you hear? Dr. Weekes: One of the conversations that I thought was really interesting was this idea of sort of how to not take away hope by the language that we use and the issues that we do or don't talk about. So I take care of patients with pancreas cancer, so unfortunately most of those patients will succumb to their disease. And so one of the questions that I posed to the audience was, "Should we be discussing that particular issue at the beginning of our interaction with patients with the context of trying to help the patients form goals around their care and sort of what they want to accomplish with their care and help to make decisions?" And I think we got sort of a variety of feedback in terms of how to approach that question. And so some of the parishioners said, "Look, our doctor's always been very, very positive. We've never really discussed issues of death and dying. My particular loved one has lived a long time. I don't think we need to be discussing that." The converse was, another patient in the room said, "Now, look, I need to know what the situation is so I can plan. And once I know what the situation is, then I'm going to plan appropriately. And so in my case, I very much want to know what the situation was that I was facing." Now, I'm curious, as a minister who helps support these patients and their families, I think that's just a very challenging position to be in. And so I'm just curious. How do you approach that situation, and what are the things that you focus on as you're trying to help patients go through this process? Pastor Joel Guillemette: Well, there's a lot in that question [laughter]. I think it is challenging. On the one hand, there's a teaching role in ministry where I think the expectation in the congregation is that clergy are going to teach us in the course of our being together what our faith has in terms of resources for the trials and challenges of life. And so you want to believe that what you've been teaching in the pulpit, in the classroom, will actually show up when cancer is the diagnosis. On the other hand, it sure didn't feel to me during our town meeting that that was happening. I mean, you spoke about never take away hope. I would have liked to have heard something like, "Well, I always have hope, one way or another, because I'm a Christian." And hope is a given because God is in my life, and whatever happens to me I'm being held up by God. So that's not so much what I heard, and so there was this part of me as an ordained minister, as somebody who walks with people through cancer care, that was disappointed. On the other hand, I know from my training in chaplaincy-type skills that it's not my job to impose my solution on the patient, in terms of what he or she needs to believe to be well in the situation. It's my job to help them find whatever resources they can find in their own personal belief system, whatever that might be. And for most American Christians, that's going to be an amalgam of many things, but then to walk with them and to continue asking them, "Well, what resources do you find in what you believe, and is that working for you?" Dr. Weekes: Right. Right. I guess one question I have for you is, how do you manage this issue of mortality? Because at the end of the day, cancer, the big C word, ultimately we're dealing with mortality. And how do you approach helping your parishioners, the family members, the patients sort of walk through that process? And maybe sometimes, even if there's a difference of opinion about how to get there, how do you manage that? Pastor Joel Guillemette: Well, I want to know-- because it's really client-centered care, from my point of view, my responsibility is to ask the person for whom I'm caring, "What do you need, and how can I help you get that?" I was having a conversation some time ago with a cancer patient who's just very anxious about her diagnosis, and we began to talk about some ways to get at that anxiety. And the thing that seemed to have the most promise for her was that maybe she could learn some meditation kinds of techniques, some very deliberate breathing, what Christians called breath prayer. And to find in that some ways to relax even just with the treatments, the chemotherapy, and just going and being—and I'm not even sure what the word that I'm looking for is. Infused? Dr. Weekes: Yeah, chemotherapy infused. Yeah, yeah. Pastor Joel Guillemette: Infused. Just being infused was a terribly frightening experience for her. So I taught her breath prayer. We practiced. And next time I see her I want to know how that worked, and we'll go from there. But others are farther along. They know that death is coming. We might want to talk about, "What are your spiritual values that you want to pass on to your family members in a kind of a will? And do you want to write that down? Do you want to create a document, a letter to your family saying, 'Here's what I have believed and what my life has been about, and I'm bequeathing that to you'?" So those are powerful moments that can happen when people choose to be mindful about what's happening to them and rather than to be in denial about what's happening. Dr. Weekes: Do you ever find a situation where maybe the patient understands that things are not going the way that we would all hope and that maybe they will succumb to the disease soon? Pastor Joel Guillemette: Yeah. Dr. Weekes: And the family is maybe not quite there. Yeah. And so to some degree sometimes that can potentially cause some difference of opinion within a family. How do you help patients and their families manage that situation? Pastor Joel Guillemette: Yeah. That's a powerful question because it happens more than one might think. I think cancer patients understand that their family wants them to fight, then expects that they will put all of the strength they have into a fight against cancer, which most patients who are facing terrible cancer recognize it's a fight they're not going to win. So they're being set up for a battle that is almost always going to disappoint somebody. And so sometimes with a clergy, caregiver, or chaplain, I think cancer patients find that that's the one person with whom they can be totally honest. Dr. Weekes: Mm-hmm. Pastor Joel Guillemette: That people can say to me whatever they need to say. I think it's really valuable. I've been in hospital rooms when the family is there, and there was this big talk about how we're going to fight this, we're all in it together, and then finally the family members say, "Well, the pastor is here. I'm going to leave you alone." And out the door they go. They go home. They go to the cafeteria in the hospital, whatever. And then the patient says to me, "Now I can tell you how tired I am of fighting. I want to put my strength into something else. I only have a little time. And I would rather be working on this part of the relationship with my family rather than on a fight that I can't win." Dr. Weekes: Wow. That's a powerful revelation. Pastor Joel Guillemette: Yeah, yeah, yeah. Yeah. I mean, I was surprised at the town meeting, Colin, that there was so much unanimity around just wanting to deny that death is even in the room. For me that was sort of a revelation of how powerful Gnosticism is in America. If I can believe it, I can get it. Dr. Weekes: Well, I mean, it's also the power to want to live which I think is— Pastor Joel Guillemette: Do you think that's what it is? Yeah. I don't know. Dr. Weekes: I mean, I think it could be a little bit of both, but I do find that it's very interesting particularly now that we've got our new therapies, some of which are targeted on different molecular abnormalities. Now with also our ability to sort of harness the immune system to treat cancer. I think it's a challenging conversation because there are times when, as a practitioner, you would say, "Okay, well, this patient is moving towards the end." And then you find that they have this molecular abnormality. You might be able to treat them for that, and then things turn around significantly. So I think the good thing about our new cancer care treatments is that we really can impact a wider breadth of patients in a substantial way. I think from the perspective of things that we're talking about now, it becomes a little bit challenging in terms of how to guide patients along that path. Now, sometimes we'll know the information about the molecular characterization much earlier in the disease process because we're doing that more commonly sort of upfront than how in the past maybe you would have done it sort of towards the end of the cancer treatment paradigm. So I think it is kind of challenging to sort of balance, I would say, this perspective of potentially the cancer winning and the patient succumbing to that cancer versus helping the patient realize that maybe there are other highly effective treatments if you have the right sort of molecular characterization, and trying to balance how to keep those two things [crosstalk]. Pastor Joel Guillemette: I agree that people I talk to as a pastor put a lot of hope in therapies that are not yet known. "Will there be a discovery in time for me?" That's something I hear a lot. But I'm thinking largely of the cancers for which we don't yet have that therapy, and that the reality is that death is coming. And yet still we want to have a positive outlook because there's a sense that—I feel like people are saying, "If you can envision it, you will have it." You know? Dr. Weekes: Mm-hmm. Pastor Joel Guillemette: And I also wonder—there's a segue in this observation that I think is important to include in our conversation today. I also wonder if that's part of living in a community where visioning has very often gotten what we want. I mean, this is an affluent community, people here, and not that people inherited their money by and large. Folks in this congregation, more than half of them, were the first generation in their family to go to college, so they've done well. And a lot of what the American dream is all about has been theirs from hard work and perseverance and a positive outlook. Right? Dr. Weekes: Absolutely. Absolutely. Pastor Joel Guillemette: And yet one of the things we talked about at the Cancer 101 workshop that you led is the disparity in cancer care zip code by zip code, and how in a community like ours the possibility for a more positive outcome is better than in communities where economic challenge is more prevalent. And yet our congregation has always said that we want to be on the side of God's justice and a more equal sharing of benefits and blessings. But that's not happening, and I wonder if it happens or not. I wonder how much our grasping after those privileges in communities like mine might keep that away from other communities. Dr. Weekes: That's a very good question. I think this is a huge societal issue, right? Pastor Joel Guillemette: Yeah. Dr. Weekes: And problem in terms of how do we best manage our resources particularly when the resources are not infinite? Pastor Joel Guillemette: Yeah. You didn't use the F word there, finite. Dr. Weekes: Yes. Pastor Joel Guillemette: The resources are finite. And so I think, to put my clergy hat back on, to be looking at the ultimate diagnosis, the diagnosis that none of us wants to hear, is an opportunity to put our focus back on the only one whose resources are infinite, you know? Dr. Weekes: Yeah. Pastor Joel Guillemette: And if we're people of faith, to find there the connection that will see us through to whatever grandeur of life might hold beyond this life. Dr. Weekes: Well, I think that I've definitely been informed and sort of thinking about this from a different perspective. And I think some of the issues that you brought up are extreme food for thought for the community at large. And as a person who takes care of these patients, I think what struck me the most is the conversation where you sort of talk about the difference of opinion in terms of the patient's mortality, the patient relative to their family because I think, as a clinical investigator, I'm always thinking about sort of how can we treat patients better, how can we get more new treatments, and so forth. And sometimes thinking about the fact that patients may make their decisions based upon what they perceive others want for them versus what they truly want. I think the question for me is now how do I navigate that and help patients? How to even recognize that and then help patients through that process? Pastor Joel Guillemette: And I have to say, hearing you talk about the cutting-edge treatments for cancer that, I mean, your face just lit up when you began to describe some of the new possibilities that science is making possible. That was encouraging for me. I need to hear that the door isn't always closed, and that maybe there are possibilities for looking beyond that we haven't had before. As we do that, I want to be able to share those possibilities in all of the zip codes of our community and not just some. Dr. Weekes: Yeah. Well, Pastor Joel, I'd like to thank you for your time. This has been an amazing conversation. Pastor Joel Guillemette: Thank you, Dr. Weekes. Dr. Weekes: And I look forward to continuing the conversation over time. Pastor Joel Guillemette: Thank you. Dr. Weekes: All right. ASCO: Thank you, Dr. Weekes and Pastor Joel. Learn more about past and upcoming ASCO Presidential Community Town Halls at www.cancer.net/townhall. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play. Cancer.Net is supported by ASCO’s Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. 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