Sometimes it feels like the great unspoken secret between doctors and nurses. The words that we dare not utter to patients and families. Perhaps it is our hope that we’re wrong. Perhaps we dread providing unwanted news. Perhaps we don’t want to face reality or extinguish our patients’ hope.
As a daughter, I felt that sense of sadness and dread, waiting to hear the news that would not be told. It was September 1989, and I was only 20 years old and just beginning my first year of medical school. It was less than a week from my first exam when my mother developed intractable nausea and vomiting. After several days of suffering at home, she decided it was time to go to the hospital.
I distinctly remember her sitting at the dining room table and saying goodbye to each of her seven children, starting with the youngest daughter, who had just started kindergarten, and finishing with me, the eldest, who had just started medical school.
I became angry with her that evening. I told her that it wasn’t time for goodbyes; she would spend only a couple of days in the hospital, and she’d be better, and she’d come home. But she knew. She knew it would be her last true goodbye.
Initially, with intravenous fluids and anti-emetics for nausea, she improved. Then during one of my visits with her, she pulled out her IV and tried to rush into the hallway. I called out to the staff to assist me. When she got back into bed, she looked at me wide-eyed. At that moment, she did not know who I was. By that fifth day at a great Boston hospital, she had become acutely confused. I had yet to know her diagnosis, but at that moment I knew that she was dying.
I told my six siblings what was happening. They were tearful, each one of them, except my youngest brother. At 9 years of age, he stood there stunned, showing no emotion.
A few days later, we were given the diagnosis: carcinomatous meningitis, a spread of cancer cells to the spinal fluid. That evening, I sat with my medical books and read. With or without chemotherapy, the prognosis was no more than six months. I told my dad that things didn’t look good. I didn’t want to put my mother through more treatments. In the preceding two years, she had already undergone multiple rounds of chemotherapy for breast cancer, which left her tired, and radiation, which had burned her skin. Despite her situation, she began spinal infusions of methotrexate.
After a few weeks, she was discharged home, with hospice. She lay in a hospital bed in my sister’s bedroom. Then there was a seizure. The ambulance was called, and she was taken back to the hospital.
There was no more chemotherapy, and her oncologist no longer saw her at the hospital.
Each Sunday after church in Natick, I’d drive my siblings and sometimes a priest to the hospital in Boston to visit her. I was so emotional, unable to focus, and beyond that, nervous having a priest sitting next to me. He’d grip the handle above the passenger-side door as I drove the city streets. I’d slam on the brakes, and he’d make the sign of the cross. I’m sure he feared each ride would be his last.
I dreaded walking the long hallway to Baker 5. By this time, my mother had become increasingly lethargic. She was no longer arousable. She was no longer my mother; her failing body was still there, but she was already gone. My visits became less frequent. I could not bear to see her that way.
After my mother had been in the hospital for several weeks, one December Sunday morning as my dad sat by her side, an unsuspecting phlebotomist came to draw blood for her daily labs. My father yelled at him. “What’s the point? Can’t you see she’s dying?” Soon after, a doctor appeared; intravenous fluids were stopped and lab draws discontinued.
Late the following night, we received the call at home. As I picked up the extension, I heard the doctor tell my father the news. “Mr. Youssef, I’m sorry to tell you that Angel passed away this evening.” I accompanied my father on that last drive to Boston.
I saw my mother for the last time. Her face and eyelids were swollen, her skin was gray and her body emaciated.
It was nearly 12 weeks from her last goodbye to us at the dining room table.
I wondered: Did it need to be this way? Was there a better way? I was a mere few weeks into medical school and there was no Google then, but it had been clear to me that she was dying. Perhaps those maintenance fluids could have been stopped sooner.
I wonder what was said during the physicians’ rounds each day: “This is an unfortunate 47-year-old female with metastatic breast cancer, diagnosed with carcinomatous meningitis and seizures; she’s been unresponsive for six weeks; she has seven children, and can’t be sent home because her husband works and the family is unable to care for her. Plan is to continue IV fluids.”
I’m 47 years old, with two teenagers of my own, living in that very same home. As both a hospitalist and a mother, I reflect on her life, her illness and her death. I hope that when I round on my patients I have the courage, patience and empathy to speak the honest words that need to be spoken.
Perhaps the great unspoken secret is not really a secret.
This article is reprinted from Kevinmd.com.