By Rebecca Loh, RN, BSN, OCN®
Last year, I was involved in the care of Emma (not her real name), a 22-year-old woman with duodenal adenocarcinoma. Cancers of the small intestine are very rare, accounting for less than 1% of all cancers diagnosed in a given year. Because the average age at diagnosis is 66 years, Emma was unusual to have been diagnosed at only 20. But Emma was an exceptional patient in many ways beyond her rare diagnosis: she was remarkably resilient for one so young and came armed with an incredible support system of loved ones.
During six months of caring for Emma from disease recurrence to end of life, I never felt more tested in my ability to medically manage and emotionally support a patient and her family. I was also challenged bearing witness to the very marrow of human experience as it played out at her bedside—the love, suffering, and loss—and containing the enormity of my emotions.
Emma’s disease reached a point where it had progressed beyond the fixable, and remaining treatment options were unlikely to offer additional meaningful time. Often, patients or family members see that as a crisis and struggle with shifting priorities from maximizing time to maximizing quality of life. Many are unable to accept it and push for increasingly aggressive and invasive interventions, hoping for more time or an elusive cure.
Emma was different. When the time came, she chose comfort with full support from her family. She rejected experimental treatments that were unlikely to lengthen her life. She was willing to forego any tests or interventions that might cause her discomfort. She had everything I had wished for my patients who struggled: acceptance of her terminal illness, resilience in the face of a terrible disease, love and support from family and friends, ability to cherish the things that mattered, and an entire medical team wishing to do right by her. And so, I thought, this one, this one might actually pass peacefully, on her terms. After all she, if anyone, deserved a beautiful death.
But Emma suffered. Despite such favorable conditions, none of us could prevent her disease from wreaking havoc. In her last months, Emma experienced nausea, vomiting, uncontrollable bleeding, and pain, so much pain. All we wanted was to give her peace, yet with each new intolerable symptom, we found ourselves debating whether some procedure or intervention might be the only way to ease some of her suffering. Despite our best intentions, Emma accumulated IVs, tubes, drains, and catheters until more equipment than medication dripped from her IV pole.
How did we fail to ease the suffering of someone so primed to focus on comfort measures only? I think, after a lot of reflection, that the problem was in my framing of the situation. The fact is, Emma had a terrible disease, and her body was strong enough to keep going until it was absolutely devastated with cancer. We did not fail; we did the best we could. Emma had the best that modern medicine could offer and a world-class team that truly cared for her, yet it was not enough in the face of her aggressive disease.
The painful part was realizing something that applied to my patients who were never blessed with Emma’s many gifts. Even if they lacked support or clarity or acceptance, it was unfair to attribute all of their suffering to a refusal to embrace a comfort-based approach. Emma was a harsh reminder that some suffering may simply be unavoidable in the face of a terrible disease. The cancer is and always has been the enemy.
Emma showed me that no magic combination of actions and decisions can completely remove physical suffering in the face of advanced disease. This experience highlighted for me the importance of ongoing research in all aspects of medical care, so we continue to push toward that elusive goal of being, finally, enough.