Losing Dad, gaining insight

Her father's death gave this young doctor a new perspective on treating her terminal patients.

By Shari S. Johns, MD
Family Practice/Charlotte, NC

I knew my dad's life was over when I heard the results of the bone scan.

I had telephoned home during a lull in the workday. I had no reason to expect a cheerful report. Dad's PSA had been rising steadily for months despite previously undergoing a radical prostatectomy and radiation. I had avoided that reality for quite some time, but my mother's broken, tired voice cut through the blankets of my self-protection. I sat at my desk and sobbed for nearly an hour.

The radiologist's report left little room for hope: diffuse metastatic disease involving the spine, pelvis, left femur, skull, and ribs. Dad was 57 and didn't resemble what I had come to know as a terminal cancer patient. He wasn't underweight, fatigued, pale, or depressed. His eyes were bright and full of anticipation, not hollow and defeated.

Dad had dedicated his life to developing a successful farming business. He'd recently retired and had easily moved on to real estate development and stock trading. His only down time was a morning cup of coffee with the newspaper. But that never lasted long because he would rush off to check on the progress of his investments or the prize pumpkin in the backyard.

Like many residents, I dreaded an admission of a terminal cancer patient. I didn't want to be faced with this obvious failure of medicine and I didn't think there was anything to learn. Because of our heavy schedule, my mind and body were frequently exhausted and I was often devoid of emotion. What did those terminal patients expect us to do anyway? It was over for them, even though they didn't realize it. The "frequent fliers," who kept returning for continued hospital visits, were the most perplexing. Weren't they as tired of us as we were of them?

In those years, I hungered for meaning in the endless stream of patients and the drudgery of being the last stop where medical unpleasantries were traditionally dumped. I never knew how many opportunities to provide meaningful care I had squandered, particularly with those people at the end of their lives.

Dad lived about 10 months as a terminal cancer patient. Near the end he became pale, and his eyes carried the fear and emptiness of fighting a losing battle. He was often severely depressed, and dealt with a multitude of physical ailments. These terrible days, however, were sprinkled with some of the most precious moments of his life with our family. He felt well at Christmas, telling jokes and singing. He used his time to plan for my family's financial future. Two weeks before he died, we all picnicked at the cabin and pond he had built for us on the farmland.

Dad wanted to live a normal life until the very end, and we were grateful for each day that he was not incapacitated by the discomforts of his disease. We were relieved when a medication adjustment alleviated his nausea and vomiting. The days of good pain control without sedation were priceless. He had a brief but unhappy hospital stay when his doctors feared spinal cord compression. His physician understood Dad's persistence about retaining normalcy and had an aggressive plan to preserve ambulation if needed.

Dad was in the hospital when he died. He received morphine and sedation to ease his last, struggling breaths while our family gathered to say goodbye.

How shortsighted I had been not to see the importance of the "little" things at the end of my patients' lives: a day without nausea, the energy to weed the garden, a laugh with the grandchildren-free of pain. Healthy people take these things for granted; they are pure gold to someone in the throes of debilitating, incurable disease.

I became a doctor because I wanted to save lives and cure people. Make a real difference, of course! I never knew that I could make a real difference for people with a terminal illness by providing comfort and respect in their precious final days.

Losing Dad continues to be a tough life experience for me. But I now understand the valuable gifts I have to offer my dying patients.

Shari Johns. Losing Dad, gaining insight.

Medical Economics

Jun. 20, 2003;80.