Narrative Inquiry in Bioethics

The Patient Discharge Instructions included an educational sheet on headache. Debbie had been admitted to the medical center five days earlier with severe head pain that she described as "the worst headache of my life." The sheet read: "The cause of your headache today is not clear, but it does not appear to be the sign of any serious illness."

Debbie died nine hours post-discharge in the hospice across the street. Her diagnosis, given to her days earlier, was multiple myeloma: a cancer of plasma cells. Multiple myeloma is diagnostic at 18% plasma cells in a bone marrow cell count; Debbie's biopsy showed 79% plasma cells. The radiologist made it excruciatingly clear: her bones were like cottage cheese—lytic lesions dotted her scapula, sternum, rib cage, and entire dorsal spine. Both collarbones, a rib, and four vertebra were fractured.

Eighteen years earlier Debbie and Steve, my mother and step-father, had gleefully said goodbye to New England winters and moved to sunny Arizona. Mom was 61 years young and retired after 34 years of administrative work in the local hospital. Now financially secure in a "senior" living community, they joined thousands like them who had migrated to lives of active southwestern leisure. Mom became a talented potter and line dancer; Steve a fitness buff. Both were happy and mostly healthy.

Nine years later Steve died after a brief illness with lung cancer. He was the second husband Mom had cared for into his grave. In time Mom sold their home, moved into an independent living facility, and continued her activities until arthritis led to a hip replacement one March. She recovered quickly at home with family and outpatient care.

But things weren't right. She had had some rib pain prior to the surgery and complained of severe back pain when getting up off the table for her pre-op x-rays. The pain became chronic. Her PCP prescribed physical therapy, but it had little effect. Mom felt her doctor didn't take her pain seriously and she had a hard time getting a call back when she needed advice. By summer, desperate for relief, she sought her PCP's approval to see a chiropractor and massage therapist, which she received, and which she did. Twice over the next four months Mom was taken by ambulance to the ED for seemingly unrelated acute issues. We, her three daughters, worried and talked with her about moving closer to one of us. She refused. I suggested that she see a different PCP who could do a comprehensive evaluation given that she wasn't receiving the attention she needed. I now imagine that her angry response reflected her deep fear and denial that something was terribly wrong.

Mom's third ED visit by ambulance led to her September hospital admission and I flew cross-country to be with her. As her eldest daughter and health care proxy, I wanted to understand what was happening, why she'd been in pain and seemed to be getting worse, and what was needed to turn things around. Mostly I wanted to care for her. Though not a clinician, I thought my years of work in health care ethics might be useful at the hospital in negotiating whatever was to come.

I was unprepared for what I saw when I walked into her room: my always energetic and talkative mother was subdued, her eyes partially closed, her neck frozen and contorted to one side, her whole body stiffly in place. As I quickly learned, movement meant almost unbearable pain. Morphine helped only somewhat. A spinal tap had been done earlier in the day and CT scans in the days before. Each had been excruciating and Mom was worn [End Page 195] out. She talked some—about feeling low energy, not eating, and not hearing well. Always the planner, she spoke of the possibility of needing to go to rehab and told me not to cancel her newspaper as she would want it when she got home.

Despite being told that a physician would stop in soon, no physician came by for the next 24 hours. (I slept in the room.) Then...