"Bugle Notes" - The Question

“Will I ever get better, Andrew?” my mother asked. She laid in bed, too weak to sit up, unable to eat, her myelofibrosis in the final stages of its relentless course. Her question stunned me – did she not know she was dying? How could she not? Was she in complete denial? Was she simply grasping for a final chance at hope when all seemed hopeless? Reality quickly set in, she did not know or at least fully comprehend, that she was dying, this despite the countless doctor’s visits, multiple hospitalizations, surgeries, failed treatments, and unrelenting blood transfusions.

The answer was all too simple to me, poor communication. Throughout the nearly year - long course of her aggressive disease, her Hematologist had not taken the time to speak truth to her nor to the rest of my family. She was “too busy” to return calls or take the time in her office to address their growing concerns and fears. With each hospitalization and failed treatment, increasing frustration and anger grew.

 I became my mother’s doctor in the sense that my family sought me for unanswered questions and decisions that needed to be made. I was no longer her son which was all I wanted to be. I did not want to be her doctor. I only wanted to be her son and love her through this. But the questions came, the decisions had to be made, and my family had to be helped. It was a terrible time and it only became worse.

 I began weekly trips to Alabama, leaving Friday at noon and returning late Sunday, a 7 ½ hour drive each way, so I could see her, support my family, and address the issues that inevitably came up. This went on for 6 months, missing only those weekends I was on call. My full time private practice continued as did the hospital calls (before we had Hospitalists). In addition, I was President of Kernodle Clinic and I had a rebellious teenager. It had become worse.

Then one weekend, as I sat on the edge of her bed, she asked the question. With a quivering voice and tearing eyes, I told her the truth, “No Mama, you won’t get better.” I could not bring myself to tell her she would most likely die in a few days. She looked at me, rolled on her side, closed her eyes and said her final words to me, “I love you, Andrew.”

I was angry. Angry that I had to speak those words to her. Angry that I could not be just her son.  Angry at that poor excuse of a physician who couldn’t take the time to speak words of truth, support, and comfort to my mother and family. I went upstairs to my room, closed the door and cried. I cried in anger, in frustration, in grief, and for the lost opportunity to simply be her son. My sister came up, we held each other, and I cried more. My mother died 2 days later. She was 66.

 Have you had to assume the role of physician within your family? If so, are we surprised? Our families love us, they trust us, and we understand the language of medicine. The physician side of us wants to help, wants to make things better, and wants to prevent suffering. Being a physician is hard enough without having to take on this heavy responsibility. There comes a time, when a health crisis hits our family, we should be able to be the son, the daughter, the husband, the wife, the mother, the father, not the physician. My mother needed her son, her little boy, not her son the doctor. I should have drawn a line in the sand but I did not. If and when your turn comes, draw that line, make that boundary, and don’t cross it.

I grieve the missed opportunity to have simply loved her as a son in her final days. I tried to do that but circumstances prevented it. Don’t let that happen to you. And don’t become that physician who sees medicine only as a job instead of a calling; a profession where compassion, caring, and relationships make a difference in the lives of patients and their families. My mother deserved such a physician.

Andy Lamb