Miss Ellie’s Story

I had walked into a hornet’s nest. It was my first day attending on the inpatient general medicine wards of our inner-city county teaching hospital. Miss Ellie was my only ICU patient. She was 87 years old, an African-American woman who had sustained an acute intracranial hemorrhage that had rendered her irrevocably comatose. The hospital’s standard Brain Death Protocol had been applied, and she had shown no responses to any stimuli. Miss Ellie was brain dead, but the ventilator and artificial nutrition and hydration were keeping her alive. Her body was strong, so this could go on for some time.

She had nine kids, seven of whom were in town and actively interacting with her providers. There was great disagreement among her family about whether she should be maintained on the ventilator or whether “nature should take its course.” The health care team felt we should withdraw life-sustaining interventions, but several members of her family disagreed, at times vehemently. It seemed that those who lived the furthest away and had been the least engaged with her over the years were the most insistent that everything be done to keep Miss Ellie alive. They couldn’t allow us to let her die “of neglect” when the lay media was filled with stories of miraculous recoveries of patients who’d spent years in a persistent vegetative state.

The attending internist I had replaced was a longtime friend of mine who had never been comfortable withdrawing therapy or even discussing such issues. So he took the stance that as long as patients were alive, we should do everything to support them. I had inherited his ward service in the past, and each time I was met by the house staff with a list of patients for whom they wanted to withdraw futile therapies. Realizing that our interventions frequently do more to patients than for them, I was always willing to entertain such discussions, painful though they might be.

This one was tough. The family members who frequented her bedside were unyielding in their individual opinions which tended more towards doing everything than limiting care. So I called a family conference and invited every family member who wanted to participate, regardless of where they were. The conference was delayed a couple of days to accommodate the arrival of a couple of her remote children. When it was finally held, more than 20 people crowded into the room: 15 family members (her children and a few grandchildren), her pastor, and our team of physicians and medical students. The family was all black, the health care team all white. Our differences were stark, and obvious.

I introduced our team and asked the family to do the same. I summarized her recent events as I understood them, asking for clarifications from our team and the family. Following the guidance of our hospital’s palliative care providers, I then made a specific suggestion that, because her coma was irreversible and she would regain no semblance of human interactions, we should disconnect her ventilator and let her die peacefully. I reassured them that our repeated tests had shown that her brain was so damaged that she would feel no pain or breathlessness. We were keeping her alive, but for all human intents and purposes, she was dead.

The family would have none of it. Several held out hope that our tests were wrong—no test was ever 100 percent right, was it? They hoped for a miracle. They wanted anything but to face her passing. But a few agreed we were only keeping her body alive, that there was no reason for this to continue. After 15 minutes of back-and-forth discussion, we were no closer to consensus. If anything, the family was more polarized than when we had begun the conference.

I then said, “This is my second day taking over for the other hospital doctor leading this team, and I don’t really know Miss Ellie. Can you tell me about her?” The gates opened. The family members smiled and then regaled me with the story of a remarkable woman. She had been raised in an incredibly poor sharecropper family in Alabama. As a young woman, she had migrated north, started a successful business, and raised and became the matriarch of a large and highly successful family. She founded her church and led it for decades as a deaconess and was a community leader in many other ways. Hers was truly a remarkable life. The stories and anecdotes flowed for many minutes.

As the stories of Miss Ellie’s life gradually abated, silence filled the room and slowly enveloped us all. Then, in a voice barely above a whisper, her eldest son said, “She wouldn’t want this.” Heads nodded, and with that, consensus was reached. By telling her story and embracing her life, her family realized that prolonging it was unnecessary and even selfish. She had attained her goals, and this was the end to her story, an acceptable end.

We arranged for her beautician to come in and cut, wash, and dress her hair. Her daughter applied makeup and put on her best Sunday dress. Gathering around her bed in the ICU, her family had pictures taken while she was still alive on the ventilator. The pastor held a brief service after which I disconnected the ventilator, disconnected and capped her IV lines, tucked her in so that only the tip of the endotracheal tube was showing, and removed the medical equipment from the room, leaving only Miss Ellie in bed surrounded by her family. I held her hand for 3 minutes and felt her pulse slow and then stop. She made no moves, no gasps for breath. She was at peace. I listened to her heart, heard no sounds, nodded, and backed away. No one moved, so I said, “It’s okay, you can touch her.” Slowly they moved in, embracing her and cherishing her passing. A few embraced me and other members of our health care team. The family then took more pictures amid tears and smiles and more stories as our team slowly, quietly exited the room.

Miss Ellie had a dignified, peaceful end because her family told her life’s story. The struggles and distrust within her family and between her family and our health care team melted in the warm fullness of her life. The coda of her song had been reached, and any prolongation was sacrilege. Her powerful story yielded the right end for her and for us.

Declarations

Conflict of Interest

I have no conflicts of interest related to this article.