“. . . for the secret of the care of the patient is in caring for the patient.”
— FWP
Her greatest joy was providing for and nurturing her young son, John. Family meant everything to Clara. So she worked two minimum-wage jobs to provide. Life had become harder after the incarceration of her husband several years earlier.
Clara initially didn't think much of her weight loss and night sweats. One fall day, however, she noticed for the first time that the pounds seemed to be melting away. It was not a welcome image for such a slight-framed woman. With the reality of an unnamed illness settling in, she used the pressing demands of work and motherhood as a distraction.
Later that week, as she returned from an exhausting day at work, Clara slipped under the covers into the oversized bed that dominated her small upstairs bedroom. Giving way to the call of slumber, she tossed and turned. Her dreams were unsettled. Awakening after an hour or two of restless sleep, she felt sweat fall from her brow. She was as hot as the summer sun.
Heart racing, even bounding, Clara called her mother, Donna. Weakened by shortness of breath, Clara muttered to Donna that she didn't feel right. That timbre of voice was unmistakable to a mother. From her nearby apartment, Donna rushed over to Clara's home to find her daughter undoubtedly ill.
Donna called 9-1-1, and Clara soon found herself in an ambulance on the way to a local emergency department. After a few hours of treatment, the doctors in the emergency department indicated that she needed to be admitted to the hospital. The infusion of intravenous fluids and antibiotics seemed to bring new life, so she agreed.
During her hospitalization, Clara noticed that the doctors seemed to come in groups, always sharing information in a caring manner. She couldn't help but wonder why they had difficulty explaining what was wrong. Several days later, they said that a human immunodeficiency viral infection was at the core of her illness and that her pneumonia was called pneumocystis.
The part that took Clara's breath away was the word “AIDS.” Clara appreciated the kindness of strangers, but she felt as though she were in a fog. Much of what the doctors said to her didn't sink in. Even as Clara improved, she found it difficult to wrap her head around the word AIDS.
After her discharge from the hospital, Clara and I met under the bright lights of a newly minted outpatient treatment room. She was a remarkable and sassy young woman. The clothing over her shoulders draped her frame in a manner awkward for such a beautiful person. Our eyes crossed as my hand gently brushed her hair to the side. She looked deeply through my eyes and into my soul. Her earnest request for life clearly registered with me.
In the coming months, Clara fought for the sake of her son and her mother. We were partners in this struggle. Medication suppressed her viral load, but her ravaged immune system never recovered. Sensing the lack of improvement and aware of the complications that she was encountering, Clara understood the gravity of the moment.
As fall became winter, Clara thought more of Christmas. She wanted to be there for John, because it was their favorite holiday. Clara thought that there might be healing in the holidays. She and I talked at length about her generalized weakness and her lack of response to the regimens we had carefully selected for her. She likened her life to a dimming flame, but the warmth of home and the lights of the Christmas tree seemed to offer her comfort.
I had looked forward to spending Christmas with my parents in Florida, but a phone call from Donna changed those plans. Clara's condition had worsened. Out of love for my patient and a keen understanding of the sacred relationship between a physician and patient that characterizes my profession, I answered the call to visit Clara at home.
Clara's Christmas tree was as she had described it, full of lights and treasured ornaments that she had accumulated over the years. Close to the tree, Donna had created a space for Clara's bed. As I knelt at Clara's side, my stethoscope moved from right to left, the path I had followed for many years to listen and learn. Clara's eyes beckoned with the kind of question that physicians often forestall but must answer. She wanted to know.
In response to the silent question, I leaned in, held Clara's hand, and gently brushed her hair to the side, as I had done many times before. We spoke for a few moments about the possibility of her returning to the hospital, though Clara's tears spoke of her earnest desire to remain at home. She understood that she was approaching the end of life, and she wanted me to help her complete that journey.
So I settled into this small, cozy haven, spending Christmas with my patient and her family. Donna, John, and a few other family members gathered at her side as I attended to her in a manner that allowed them to grieve without undue interruption. Clara seemed happy with the shared reading of her favorite scriptures and the sounds of her best-loved gospel music.
Close to midnight on Christmas day, she drew her last breath while holding my hand. As she wished, her living had been completed in her home, on her ground, and on her terms. My promise to her had unfolded with reverence and respect.
I am eternally grateful to Clara for having chosen me to receive her final Christmas gift—the treasure of her trust. There is no greater honor for a physician than the confidence of a soul whose path in life is narrowing to a close. It is my firm belief that this honor was bestowed upon me because I gave the last full measures of my profession—service and devotion.