By Colin D. Weekes, MD, PhD, and the Reverend Joel B. Guillemette
2018-2019 ASCO President Monica M. Bertagnolli, MD, FACS, FASCO, is putting the words of her presidential theme—“Caring for every patient, learning from every patient”—into action. During her term, she and other ASCO leaders will be traveling to local communities around the United States to moderate question-and-answer sessions with patients, survivors, caregivers, and oncology professionals. Providers will offer expert answers to patient questions and learn about the vital needs of patients in these communities. Members who participate in these town hall sessions, “ASCO in the Community: Listening and Learning From Our Patients,” will share the knowledge they’ve gained in a series of blog posts throughout the year. They will also share takeaways for patients on Cancer.Net, ASCO’s patient information website.
In September 2018, a town hall event was held in Sudbury, MA, at Sudbury United Methodist Church. Colin D. Weekes, MD, PhD, an ASCO leader at the event, and the Reverend Joel B. Guillemette, lead pastor at the church, recorded a podcast about their experience at the town hall and how they approach deeply challenging questions of hope and mortality in their work. An excerpt of their conversation is shared below; it has been edited for length and clarity. Listen to the full podcast on Cancer.Net.
CW: I’d really like to thank you for allowing ASCO to come to your church and do what we've called the Cancer 101 Town Hall meeting. I was wondering if you could 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?
JG: You had a session in Dorchester, MA, 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. 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 oncologic practice here in the Boston area.
CW: 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 treatment and how do we proceed with the issue at hand. For me, it was really interesting to hear the perspective of the patients on 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.
JG: What did you hear?
CW: One of the conversations that I thought was really interesting was this idea of how to not take away hope by the language that we use and the issues that we do or don't talk about. I take care of patients with pancreas cancer, so unfortunately most of those patients will succumb to their disease. 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, what they want to accomplish with their care, and help to make decisions?"
We got a variety of feedback in terms of how to approach that question. 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." 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. 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. 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?
JG: Well, there's a lot in that question. 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. 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.”
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. 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?"
CW: Right. 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. How do you approach helping your parishioners, the family members, the patients 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?
JG: 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 patient with cancer who's just very anxious about her diagnosis, and we began to talk about some ways to get at that anxiety. 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. 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.
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'?" Those are powerful moments that can happen when people choose to be mindful about what's happening to them rather than be in denial.
CW: Do you ever find a situation where the patient understands that things are not going the way that we would all hope and that they will succumb to the disease soon, and the family is maybe not quite there? That can potentially cause some difference of opinion within a family. How do you help patients and their families manage that situation?
JG: That's a powerful question because it happens more than one might think. I think patients with cancer 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, when most patients who are facing terrible cancer recognize it's a fight they're not going to win. They're being set up for a battle that is almost always going to disappoint somebody. Sometimes with a clergy, caregiver, or chaplain, I think patients with cancer find that that's the one person with whom they can be totally honest, 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. 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."
CW: Wow. That's a powerful revelation.
JG: 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 a revelation of how powerful Gnosticism is in America: If I can believe it, I can get it.
CW: Well, it's also the power to want to live.
JG: Do you think that's what it is? I don't know.
CW: 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, and ow also with our ability to harness the immune system to treat cancer. 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. The good thing about our new cancer care treatments is that we really can impact a wider breadth of patients in a substantial way.
But 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 upfront than how, in the past, maybe you would have done it towards the end of the cancer treatment paradigm. It is kind of challenging to 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.
JG: 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 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?
I also wonder—there's a segue in this observation that I think is important to include in our conversation today—if that's part of living in a community where visioning has very often gotten what we want. This is an affluent community, and not one where 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. A lot of what the American dream is all about has been theirs from hard work and perseverance and a positive outlook.
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. 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.
CW: That's a very good question. I think this is a huge societal issue and problem in terms of how do we best manage our resources, particularly when the resources are not infinite?
JG: The resources are finite. 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. 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.
CW: I've definitely been informed and 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.
As a person who takes care of these patients, what struck me the most is the conversation where you talk about the difference of opinion in terms of the patient's mortality, the patient relative to their family. As a clinical investigator, I'm always thinking about how we can treat patients better, how we can 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. The question for me is now how do I navigate that and help patients? How do I even recognize that and then help patients through that process?
JG: And I have to say, hearing you talk about the cutting-edge treatments for cancer—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 is the director of Medical Oncology Research for Pancreatic Cancer at Massachusetts General Hospital. He is the 2018-2019 chair of the ASCO Annual Meeting Education Committee and is a graduate of the ASCO Leadership Development Program. Pastor Guillemette is the lead pastor of Sudbury United Methodist Church in Sudbury, MA.