By Anne Millington
Many people live with chronic physical pain, suffering greatly from osteoarthritis, fibromyalgia, migraines, neuropathy, spinal stenosis, sciatica, compression fractures, and more. Living with pain is tough, and in the words of a chronic pain clinic patient, “Pain brings you down. It makes you depressed. Pain is completely overwhelming. It plays weird tricks on your brain.” Living with pain is also isolating, particularly since it is a largely invisible condition. As a patient experiencing severe neuropathy noted, “I see all these people going about their daily routines, looking normal. I suppose I look somewhat normal on the outside too, but they have no idea of the physical hell I am experiencing.” (Identifying details have been changed.)
Since opioids are no longer liberally prescribed, many modern pain therapies include large doses of physical therapy and exercise — which require great commitment and effort by the patient. “There are treatments for pain, but they require a partnership between doctor and patient,” said Dr. Cyrus Yazdi, a board-certified pain medicine specialist at Beth Israel Deaconess Hospital-Milton. “Patients need to be motivated to improve.” But that motivation can be difficult to sustain when pain is overwhelming and isolation is high. As Dr. Yazdi notes, “Feeling seen and heard and appreciated can bring patients a lot of comfort and inspire them to be disciplined about their pain therapies.”
Chaplains can provide spiritual care to chronic pain patients in ways that reduce isolation and provide much-needed hope for a better future. One patient was so crippled and hunched over by painful arthritis that he could not walk and even struggled to lift his head. During our visits, he shared stories with me about his previous life, family, and career, and spoke of the challenges of his current physical condition. As I was leaving his room one day, he did his best to turn his head to look up at me and said, with a relieved smile, “Thank you for your visits. They really take the edge off of my day.” While I certainly could not fix his condition, by listening to him I brought him some relief, at least temporarily. Relieved from the throes of isolation, even for a moment, patients may well develop fresh hope for connection in a way that motivates them to adhere to pain management programs.
Pastoral caregivers can draw from formal models such as the Spiritual Assessment and Intervention Model (Spiritual AIM), developed by Shields, Kestenbaum and Dunn. According to this model, patients tend to have three core spiritual needs that play out in interpersonal relationships: the need for self-worth and belonging, the need for meaning and direction, and the need for reconciliation. Under stress, patients tend to experience one of the three needs most dominantly, and thus the Spiritual AIM model proposes a different type of pastoral intervention to address each need.
When patients need self-worth and belonging, for example, they often blame themselves for their illness or worry that they are now a burden to others. I remember an encounter with a patient suffering from spinal stenosis who feared “being a burden to my husband.” She continued, “He has to do everything for me now, and he also has to do everything around the house, home maintenance, paying bills, you name it. He’s a good sport, but he deserves so much better than this.” According to the Spiritual AIM model, an appropriate intervention in this case involves creating “a community of two” that affirms and supports that patient’s value to others. I told the patient that I appreciate her, and I raised examples, based on the stories she shared with me, of how her husband appreciated her as well. In response, she lit up with the hope that she might not in fact be such a burden, and she spoke about her goal to accompany her husband to an upcoming family wedding.
The model proposes a different pastoral intervention, however, when a patient has a core need of meaning and direction. I recall visiting a man in his 30s, a construction worker who a few years back had fallen 25 feet off a ladder at a job site. Multiple fractures to his back, pelvis and legs left him wracked with physical pain. He was too disabled to continue the construction work that he loved, and, worse, had become addicted to opioids. I assessed that he needed meaning and direction, as he expressed confusion and uncertainty around how he should manage his life in the wake of his injuries. Of particular concern was his estrangement from his son, who “gradually drifted out of my life after I divorced his mother.” He wanted to strengthen his relationship with his son, but was unsure how: “Should I call him more? Should I invite him to visit? Or maybe I should wait for him to call me” In this case, Spiritual AIM recommends guiding the patient in discerning and committing to a course of action. I did my best to help the man commit to calling his son once a week. While he still had a lot of physical challenges ahead of him, having a clear plan to improve his relationship with his son gave him hope for the future and more motivation to cooperate with pain treatments.
Patients who have a need for reconciliation, the Spiritual AIM model claims, frequently blame others for all conflict. Although they desire to love and be loved, by blaming others they escalate tension and tend to be surrounded by strained and broken relationships. One patient with acute migraines raged at everyone around her and had alienated her family, friends and even the hospital care team. She was particularly angry at her daughter. “All my daughter cares about is my money,” she declared, jaw clenched. “So I sure showed her last Christmas. For her gift I gave her a check, then I stopped payment on it at the bank so she couldn’t cash it. She’s furious and won’t talk to me now. See? If she doesn’t get my money, she won’t even talk to me!” For such patients, the model recommends serving as a truth teller, gently guiding patients toward an awareness of how their behavior has hurt or alienated others. After listening to her story with a particular eye toward building her trust, I “wondered aloud” about what the incident must have been like for her daughter. While confrontation risks alienation, the patient seemed receptive. With a flicker of remorse passing over her face, she quietly responded, “I would have felt very angry if she had done that to me.” While I do not know if this led to any reconciliation, perhaps now the patient could work toward a better relationship and envision a better future for her life.
Pastoral caregivers can also draw from the Spiritual AIM model to cultivate patients’ sense of connection to God. One patient with a need for self-worth and belonging claimed, “I’m in pain because God is angry with me. I brought all this on myself.” In response, I affirmed God’s love for him, and reassured him that God does not want him to suffer. In an additional encounter, a pain patient with a need for reconciliation declared, “I’ve done everything I could for God, and God gives me nothing but the shaft in return.” In this case, I intervened by “holding the mirror up” to ways God might be an ally, not an enemy. With any luck, these interventions gave the patients involved increased hope for better connection to God and, by extension, additional motivation to stay the course with their pain treatment therapies.
As pastoral caregivers, we can definitely motivate patients to live well with chronic pain by decreasing patient isolation and instilling hope for a better future with an improved sense of connection to others. However, our ability to be present to the pain of others depends on our courage to be present to our own pain, be it physical, spiritual, or both. What we fear and avoid in ourselves, we will fear and avoid in others. What in our life hurts? Are we sufficiently motivated to manage our pain? Has our pain isolated us from others, from God? What is our own core spiritual need? When we earnestly address our own pain, we too can become “joyful in hope” (Romans 12:12), as we naturally open ourselves to greater breadth and depth in our connection to all others, including to the patients we seek to serve.
Anne Millington, BCC, is a chaplain at Beth Israel Deaconess Hospital-Milton in Milton, MA.