Ramy Sedhom, MD
My college roommate called on Thanksgiving to discuss his recent test results. He had been experiencing worsening headaches that weren’t going away. After the phone call, I broke into tears, knowing the road ahead. His mother, who would be heroic throughout the ordeal, texted me to confirm what she already knew: Her only son was going to die from a glioblastoma multiforme (GBM).
A few short months later, after 1 of his radiation sessions, he had a seizure. I received a call that he was admitted to the intensive care unit and intubated. The prognosis didn’t look good. His mother, tearful over the phone, kept repeating, “I’m so scared.”
As an oncology fellow, giving bad news can just beat you down. It’s been the most difficult transition from internal medicine. All throughout training, we do our best to help patients and their families. But there are more cases with happy, complete endings in internal medicine.
Caring for patients with cancer requires a change in perspective. The reward is the fight itself, the daily work. It’s the lives we’re able to save and the dignity we’re able to preserve in death. But the grief, I learned, is not limited to patients or their families. It is also an unaddressed part of the cancer continuum.
Over the 6 months following his diagnosis, I saw surgery, chemotherapy, and radiation treatments ravage my friend’s body. I spoon-fed him. I held back tears when I helped him to the bathroom at night. The last time I’d held a bowl for him to vomit, we were in our prime health, college students celebrating after a week of finals. Now, a few short years later, he was thin and had lost the ability to walk.
We tried to share some old stories, but he had trouble focusing. I couldn’t tell if it was fatigue or sadness that was pulling him down, but it deepened with each day. He told me that his favorite part of the day was being asleep—he was never sick in his dreams.
The disease was relentless. He no longer had the will to live. A few weeks later, I watched him drift into a coma in the intensive care unit where I rotated as a medical student. Days after that, I prayed silently at his funeral service.
I still keep in touch with his mother. She’s never regained her vigor, even though it’s been years since her son died. Every time our eyes connect, I can see her searching for him. I, too, feel a sense of guilt that is difficult to explain. Why was I so lucky to remain in good health? Should I ask how she is doing or not bring up her son? Do I tell her I miss him? Or will that make her relive a traumatic memory?
During a rotation 3 years later, I was discussing the care of a young patient with terminal GBM who was in the process of transitioning to hospice with some other residents. There were no viable treatment options left, and the care team muttered a series of negative commentaries on this young patient’s family and their reluctance to “give up” on life and “accept that he was dying.”
One of the more experienced oncologists had stopped by after clinic to see his admitted patients and shared a moment of compassion, surprising both the grumbling residents and the patient. “Sometimes,” he said, “there are things in life worse than dying.” I tried to comfort my patient’s mother while she broke down weeping. She was unable to hold her only son’s hand.
The senior oncologist was familiar with the grief and suffering that continues for all those who experience the loss of a loved one. He interrupted any arguments among the assembled doctors, helping us to imagine how the patient must have felt. And while I realize that situations will always arise that cause moral distress for providers, we must remember the uniqueness of the dying experience.
We cannot always choose who will be here with us to receive our love, but we can still choose to be loving, patient, and understanding. And this is how I remember those dying in front of me each day—that each story comes with a history of suffering, sacrifice, and pain.
The experience of losing my friend has affected how I approach patients’ family members as they’re watching a loved one die. It is easy for physicians to pontificate about what we think is best, but we often forget about the memories that extend beyond our interactions to their families and loved ones. There is no role for contention in a medical setting. Our care extends beyond our patients, to their wives, husbands, children, parents, and friends.
As a matter of good practice, I’ve begun writing letters to the families of patients I’ve cared for and lost. I share what I learned from caring for them, that it was certainly a privilege, and that it has prepared me to help a future patient suffering through a similar experience. I don’t know how the families take it, but for me it provides closure and an opportunity to recover a tangible piece of what was lost.
We all want to hold on to a few more moments with the people we love–we are never taught how to die. But always remember those you've have lost along the way. It humanizes the caregiver experience. I’ll forever miss my friend, but he has taught me so much about how to care for others.