Clinical Trial Indeed
By Amy Greene, Board Chair | June 3, 2019
This month’s column is a little different. I wanted to step aside from all the ACPE business and busy-ness for a moment and focus on something more personal than all our association activities. Though a large number of you already know (and are following through CaringBridge) the Rev. Dr. Peter Yuichi Clark of UCSF Health at the University of California, San Francisco, I wanted to give him a wider audience because he is one of the wisest and most patient people I know. I’ve known Peter since we were part of the same congregation in Atlanta while he was at Emory for his PhD in the early 1990s, and then through our respective CPE certification processes after that. He was part of the Organization Design Work Group for ACPE (2014-2016) which set us as an association on this amazing journey of transformation and growth. He is now actively engaged in a clinical trial to treat his cholangiocarcinoma – a formidable cancer that affects the biliary system. I wanted the whole membership to have access to his thoughts, so I gave him four questions. Here are his answers.
Be sure to read all the way to the last question if you want an amazing blessing for yourself and our work.
Q: How has being a patient through such a long and difficult journey changed the way you think about what we do as Spiritual Care professionals?
I had always perceived myself as an empathetic person who could sit with patients in their suffering, and I pray I have managed to connect with people more often than not over the years. But what I have discerned is that there are several layers to empathy, and—because of my own personal history—I had been shielded from exposure to a very important layer up until I was diagnosed with cholangiocarcinoma. One layer is temperamental empathy, or the empathy each of us is able to summon naturally as part of our character or personality. A second layer is trainable or acquired empathy, in which we can hone our innate empathy in order to help others. Historically CPE has been very good at assisting students to appreciate the first layer and to develop the second layer; I definitely have benefited from it! What I believe I had been missing was a third layer, which I call experientially shaped empathy. I had been in countless patients’ rooms and listened to their stories, but I think my lack of experience of chronic illness for myself and (to a large extent) within my intimate circle led to a gap in my empathy. I could follow them only so far, because I had nothing analogous in my own life to allow me to accompany them further. Now I do, in ways I could not have imagined prior to this disease.
I don’t mean to suggest that spiritual caregivers must have some kind of trauma or crisis in their lives in order to be authentic and effective. I guess what I am saying is that this whole journey has gifted me with a heaping portion of humility. When I’m physically able to visit patients in their rooms, I do so now with the clear-eyed realizations that I cannot ever know the fullness of this person’s story; that I am still asked to be with the person in that incompleteness; that my suffering can create an approximate point of connection with the patient’s pain, even if I never mention it; and (to lean on Henri Nouwen’s timeworn yet beautiful phrase) that I can extend myself as a wounded healer only insofar as I trust that the Sacred will help the patient and me to build a bridge on which spiritual care can travel back and forth between us.
Q: What role has your faith played in your decision to participate in clinical trials?
I’d love to be able to say that, as a Christian, my choices are always guided by my reliance on God’s compassion. Yet confessing that faith also means accepting the fact that I’m human, I’m fallible, and I can’t claim to be consistent in how I rely upon my religious values and spiritual practice through this whole ordeal.
I also must admit that I entered the clinical trial with mixed motives. Obviously, for understandably selfish reasons, I’d rejoice if the experimental immunotherapy shrinks my cancer or makes it disappear. At the same time, though, I was ordained nearly three decades ago to be a chaplain and a teacher, and if the oncologists learn something from my experience that can bring healing and wholeness to future patients—even if this treatment doesn’t extend my own life—then I will draw some comfort in knowing that I had fulfilled my calling even to the end.
I’m also aware that, in ways both large and small, this cancer constantly challenges me to take a leap of faith (in a Kierkegaardian sense) into an unknown, risky future. I imagine that is part of the point that Jesus was making when he told a potential disciple: “No one who puts a hand to the plow and looks back is fit for the [realm] of God” (Luke 9:62 NRSV, modified). If I choose to live in hope and faith, then I must accept certain risks as part of the bargain. It has been an exhausting and taxing furrow I’ve been plowing recently, to put it mildly. This clinical trial is part of that furrow, and there are no guarantees—it is a risk. But I do embrace both the risk and the hope.
Q: What do you most want people preparing for spiritual care and education as a career path to know now that you’re getting this other (un-asked-for) form of education?
At the risk of sounding hackneyed, the most profound moments of support I’ve felt during this illness—over and above my medical care, which has been excellent and at a level I wish all people could receive—have come through simple human presence. One of the most memorable didn’t even involve a chaplain (of whom there have been several, and I am grateful for all of them), but an interventional radiologist. Sitting beside my gurney to explain the procedure he was about to perform, he paused and said: “I’ve read your chart, and you have been through so much. I’m so sorry you’ve had to go through all of this.” With twenty-two words he found a way to voice his solidarity, and I felt seen and heard by him. Hence one lesson I’ve expressed to medical students, nursing students, CPE students, and anyone else who will listen is this: you don’t have to say a lot to say a lot. Human kindness, an attentive ear, and a clear, brief declaration of your presence can accomplish more than you might realize.
Q: Is there anything else you want to say to the ACPE membership right now from your vantage point?
I have been affiliated with ACPE as a student, a supervisor-in-training, an associate supervisor, and now a certified educator for over thirty years. Because of clinical pastoral education, I have been given the priceless opportunity to accompany students as they discover rewarding learning that enhances their spiritual care, and I have had the privilege of participating in numerous initiatives over the years that have held great academic, clinical, creative, and organizational potential. I feel incredibly fortunate to have a career that is both personally exciting and professionally satisfying, and I owe ACPE much credit for making that possible.
All that said, I want to affirm two other gifts I received from CPE that are coming in quite handy these days: the sustaining power of community and the inner power of reflective awareness. First, because of CPE I have a large and strong gathering of former supervisors, peers, and colleagues—in other words, friends—who are holding my wife Tilly and me in the Light, to use a Quaker phrase (the fact that I even know this term is thanks to CPE friends who practice in that faith tradition). Like any chronic illness, cancer often seems like a solitary slog, but it is not something that people should face alone if it can be helped. At its best CPE teaches how authentic community can be cultivated, and so I’d encourage us to keep embodying that quality in our centers and programs. One never knows when that supportive web might become a form of survival.
The second gift is the familiar action-reflection-action model. Because each person’s cancer is unique, there is often an air of gradual revelation to it all. While my oncologists have consistently been informative and responsive to our questions, there always appears to be a “curveball” about to be thrown. An essential strategy for me to handle these unexpected twists and turns is my ability to step back and reflect on what is happening—a trait that was nurtured during many hours of conversations with CPE peers and supervisors. Human beings are often described as “meaning-making animals,” and in my opinion nothing helps people strengthen that ability like the clinical rhythm of learning that we practice in CPE.
Hence what I would voice to ACPE members boils down to: Keep on keeping on. CPE offers students so much learning that carries professional advantages, but I am also increasingly aware of how CPE has equipped me to face my personal struggle. For that I am overwhelmingly grateful, and as a result I would exhort us to stay the course.