Finding Grace in Grief | An Oncologist’s Perspective
Often when people think about cancer and the people it affects, the patients, caregivers, friends and families come to mind. But have you ever stopped to think about the doctors who work with cancer patients every day? How do they “deal” with cancer?
Here is a beautiful story from a wonderful, compassionate oncologist and insight into the emotions doctors experience.
Finding Grace in Grief
Source: ascopubs.org
Amy looked like most girls at the end of their wedding day—exhausted but content, surrounded by family, and held tightly by her husband. Her white strapless dress was adorned with embroidery, and a sparkling tiara sat atop her thick short hair. She was beautiful. But beneath fake eyelashes and tasteful makeup, Amy was as pale as I had ever seen her. She wore a nasal cannula taped to each cheek, and a central line dressing peeked out above her gown. Because, unlike most girls, Amy did not get married in a church or a ballroom. Amy got married in a hospital during the last week of her life.
As Amy rested, her husband held her hand and pressed his forehead to hers, tears gently streaming down his face. Dave, Amy’s husband, had proposed to her in this hospital. They had a courthouse wedding a year after I met them, but Amy resisted a formal wedding at first. She had not pictured her wedding day in a hospital and held out hope that she would be able to one day walk down the aisle. The week of her death, the wedding became a priority. She picked out a dress, and her priest and family gathered for the ceremony.
After everyone left, I sat beside Dave and held Amy’s other hand as she drifted in and out of sleep. Dave looked at me with wet eyes and asked me how long he had left with his wife, how much longer her suffering would last. I turned to Amy, unsure if she was awake and wondering whether she shared Dave’s questions or wanted to hear the answers. “Amy?” I asked, unanswered. Turning back to Dave, I told him the truth: “I don’t know.” We shared a quiet moment. Another tear fell from his cheek and landed on Amy’s dress. I looked at Amy struggling breathlessly and saw this grief in earnest for the first time. A heartbreak that both was, and was not, mine to hold.
Hours later, I drove home through the rain. I wondered if I could leave this pain in the car—the space between home and the hospital. I felt it deep in my heart and questioned why it was only now that I ached for a patient who had been dying for months.
We know that parents are able to simultaneously understand the gravity of their children’s advanced cancer and maintain hope.1 But we do not acknowledge that we are capable of the same duality. Amy had synovial sarcoma. She was treated with chemotherapy before local control, and when the surgeons took the tumor out, most of it was alive. At the time of relapse, I worried Amy’s mother had not heard me when I told her we would not be able to cure Amy of her disease. Intermittently, I was concerned that Amy herself did not understand she was dying. I remember telling myself and others that Amy and her family were coping through denial, and that was acceptable as long as Amy was able to articulate goals of care and make decisions in line with these goals. During all this time, I never acknowledged my own denial. I did not realize that I, too, had been protectively focusing on hope, sidelining the knowledge that Amy would die.
Ethicists have described how physician optimism and rejection of reality may affect patient autonomy and impair decision making.2 In this case, I do not think I was cognitively optimistic. If you had asked me, and her family did, I would have told you that Amy’s cancer was aggressive and that it would kill her. Amy was 16 years old when she was diagnosed with cancer. She spent her senior year in and out of clinics and operating rooms. On prom night, Amy slept in a hospital bed, too exhausted to change out of her periwinkle mermaid gown. She progressed through every treatment and each intervention we provided. She suffered through chemotherapy, surgery, and radiation. Eventually, we could no longer offer her disease-directed therapy. We treated Amy’s symptoms, and her family shifted focus from cure to comfort. We all hoped for more time. When Amy declined a phase I clinical trial that would have required her to move away from her husband, mother, and daughter, I supported her choice. As Amy grappled with decisions about chest tubes and home care, we prioritized comfort. We discussed compressions and intubation, having numerous conversations that nobody ever wants to have. During these discussions, Amy and I faced reality together, and it did not feel optimistic. But away from those words, we cheered each other up. We talked about her Make-A-Wish shopping spree and the unicorn cake she was baking for her daughter’s birthday. We cared for one another, and we focused on hope.
Physicians have described the denial they experience when they become caregivers or patients,3 when their work hits too close to home and someone they know personally faces a devastating illness. We also use denial when we are not family, to protect ourselves as we care for our patients. In Amy’s case, I was not a patient or family member, but I was a caregiver. As doctors, pediatricians, and oncologists, we are providers. We bear witness and tend to suffering. We care deeply for our patients and their families, not simply by prescribing medications, but by loving them, entering their lives, and letting them enter ours. Yet the toll this role takes is one we frequently underestimate and overlook. Our patients come to dinner with us when we eat the foods they love, and they sit on our couches when we cheer for their teams. We think about our patients when we exercise, when we wake up, when we play with our own children, and when we fall asleep. These thoughts are not constant, but they are consistent. We question the decisions we have made and pray that the choices we guided our patients through were appropriate and in their best interest. We worry about patient families, celebrate their successes, and grieve not just for them but with them. This is all included in caretaking—it is the humanity of medicine. It is empathy rather than sympathy. It is the best, and sometimes the worst, part of the job.
Four days after Amy’s wedding, I put my stethoscope on her chest, and I told the room she was dead. I stood there dry eyed and composed, instinctively caring for those around me in that moment. Then I walked off the floor and into an empty workroom. I sat in front of Amy’s chart, took off my glasses, and cried into my scrubs. I ate ice cream and completed the paperwork. I went home and walked the dog. I spent time with friends.
But that night I was still crying. I cried at dinner, and eventually I cried myself to sleep. I sobbed with gut-wrenching devastation. She was 18 years old. She should have spent those years thinking about how to begin an independent life, instead of contemplating how her life was going to end. Amy had a 2-year-old daughter she would never see grow up, a mother, a brother, and a husband who would bury her. I wept with the uncontrollable freedom that I have seen from parents only when they are assured that their children are not watching. I finally understood. Amy was dying. Amy was dead.
I was overwhelmed with a grief that I had tried to prepare everyone around me to face but had somehow not seen coming. As a young trainee, this was the first of my patients who had died. Amy was the first person I had guided from diagnosis to death, and there was something profoundly different about coming to the end of this journey. I could not stop thinking about what I told Amy’s mother and her husband. “You did everything right.” “You were everything she needed.” It was all true; they were amazing caregivers. But where did that leave me? Amy’s cancer was incurable. It was aggressive. Rationally, I understood the facts and that perhaps nobody else could have done a better job. But emotionally, I believed that I had failed, that the job I did was not enough. I was her doctor and her caregiver. It was not my only job, but it was arguably my most important job, and I could not save her life. So, I told her family I was sorry, and I grieved.
When Amy died, my friends, family, and particularly my colleagues, supported me. They reached out, commiserated, and repeated the rational facts I knew to be true: Cancer had killed Amy, I had not. They comforted me using the same words I had used to comfort Amy’s family. At the time, I did not appreciate the strength of these words. Explanations of Amy’s death did not provide solace, because you cannot reason through grief; you cannot rationalize heartache.
In the end, Amy taught me grace. She and her family guided me through the sorrow of losing someone you love from a disease you wish you could cure. Immediately after Amy’s death, my grief manifested as impotence. I felt sad and powerless, two emotions that I find neither familiar nor comfortable, and I sat with them. I reflected on the care I had provided and tried to learn. Were there decisions I would have changed? Was there anything I should have done differently? I did not cure her, and throughout treatment Amy had many moments of pain and suffering. However, during our time together, Amy also celebrated her daughter’s first and second birthdays, traveled to see family abroad, went to prom, graduated from high school, got engaged, and had two weddings. Those are victories. Amy taught me to take care of myself and to allow others to care for me. She encouraged me to keep running, to write, to eat chocolate, and to think of her often, even at home, because it helped. Finally, Amy taught me patience. With time and reflection I have begun to heal, and my resilience is a part of the legacy she left me. As a physician, caretaker, and human, I hope that I am always driven toward improvement, and also, that in the face of incurable disease, I find humility.
There are so many outstanding oncologists in our country. If you are blessed with a great medical team, we encourage you to reach out and thank them. Send them an email, a card, a letter. It will remind them of why they chose this incredibly challenging career.