It started out as a run-of-the-mill follow-up in my oncology palliative care clinic in East Tennessee. I had seen this patient just a couple times, but had fielded a number of phone calls in between visits. She was in her fifties and had low-volume metastatic nonsquamous cell carcinoma of the lung. At her initial visit with me, we had connected over a clinical trial that she and one of my friends had been on together. It had stripped the patient of her quality of life after developing the equivalent of second-degree burns on 20% of her body. She elected to stop all treatment. She came to me with progressive disease after 6 months off any therapy to regain her quality of life in the midst of a terminal diagnosis. She struck me as a very centered woman who had clearly thought out her options and understood her line regarding what she was willing to go through to potentially live longer.
Fast forward to the most recent visit. She had recent progression of her metastatic disease and came to discuss compassionate care options based on her oncologic genetic profile, with the underlying desire to maximize quality of life. As we discussed her ongoing peripheral neuropathy secondary to treatment and rheumatologic flare, she said, “My pain is controlled and I don't want to increase the medications in the future, regardless of my pain.” This is a common discussion that I have in clinic. I asked, “What are your fears and/or concerns about pain medication? My goal is to control symptoms without overtreating them.” I explain the science behind addiction and assess their risk factors.
She responded with a common answer about the concern for developing opioid abuse. I paused, then asked her why she had this concern. She began sharing slowly, initially mentioning that “my son has had issues.” She looked down at the floor as moisture filled her eyes. She looked up at me and tentatively began to pour out her heart about her 21-year-old son who was addicted to “everything.” She and her husband had adopted him as a baby. He had been a wonderful child and a relatively easy teenager until he started drinking alcohol. He had continued to make destructive decisions until she and her husband had to make the heartbreaking decision to let him reap the consequences of his actions. As a result, he began living on the street. I said nothing as she shared, but thought about my deep love for my 2-year-old son and imagined how it would gut me to make that impossible choice. She shared that her husband had just picked their son up last weekend and brought him to the house for a Father's Day meal. They ate together and he washed his clothes. She recalled, with tears in her eyes, driving him downtown and dropping him off at his corner of choice after the afternoon together. She told me about the counseling and rehab he and the family had been through and that they were “waiting for rock bottom.”
That evening at home, I meditated on this conversation, grieved for her loss, and hoped for restoration. It reiterated that my role in palliative care is not only to help the broken body, but the fractured spirit. This relatively nonemotive woman with very logical thoughts about life and death in the face of a terminal cancer had broken down. She had disclosed the issue that was causing the most pain and distress in her life. She ended the visit apologizing for “getting off track,” but said that she wanted to live long enough and well enough to see her son get sober. There is nothing more that I want for her as well.