This essay could as easily be entitled "There Are No Villains Here." Medical personnel, trained to save lives and not to let patients die, exerted themselves to that end. Hospital staff and the families of other patients in the intensive care unit, as time and ability allowed, tried to comfort. Nonetheless, those 5 days were among the loneliest and most disorienting that I have ever experienced.

As I think back on it, I am astounded that I had so little inkling of how hard it would be to help my mother have the death she wanted. A widow of 6 years, my mother had retained the no-nonsense attitude of her Kansan farming origins. She lived in an affluent and stable community on the east coast, and she saw her physician of 25 years routinely for checkups. When we talked together about how she wanted to die, she was clear, consistent, and matter-of-fact. She hoped for a swift death and wanted no unnecessary prolongation of her life.

Entrusted with a general power of attorney and a power of attorney for health care, I believed that I could make decisions on her behalf as she would want them made if she were to become incapacitated. As it turned out, I was woefully unprepared for what was in store for her and for me.

On a spring morning in April, my mother abruptly became ill and was promptly admitted to the local hospital. When I arrived in the late afternoon, she was resting comfortably after a long day of diagnostic tests. Because she had been tired by the day's ordeal, I stayed only briefly, promising to be back early in the morning with newspapers and books. I left my number with the nurse, in case of an emergency.

At 2:00 the next morning, I was awakened by a call from the night nurse. My mother had suddenly taken a turn for the worse and was being transferred to intensive care. I arrived on the hospital floor just as the gurney was being wheeled into the unit. My mother's face was covered by an oxygen mask, but she was able to respond to my voice with an exclamation. It was the last time she would be able to do so.

I tried to accompany her into the intensive care unit but could not. The physician in charge firmly instructed me to stay outside until my mother was "taken care of." An hour later, when I was allowed to see her, she was attached to a respirator and had a feeding tube inserted down her throat.

What had happened? My mother had left a carefully updated power of attorney for health care with her physician, her lawyer, and her offspring, reaffirming her determination not to have her life prolonged by artificial means. Exactly the opposite of what she had wished had occurred; the living will had become invisible just when it was needed most. My mother's physician, it turned out, had not notified the medical team of her advance directive, and the hospital, despite a 1990 federal law that mandates such inquiries, did not ask my mother whether she had such a document. And I, in turn, had neglected to check that the physicians and nurses knew about her desire not to have heroic measures used to prolong her life.

Over the ensuing 5 days, I came to understand how serious the results of these omissions were. I found that I was dealing with a bewildering array of medical specialists trained to prolong lives, not to let patients die. During the first day that my mother was in the intensive care unit, I asked her physician to make it clear to the attending medical personnel that she had given me durable power of attorney for health care. He readily complied. I was told that my mother had had a stroke and that she would not recover from her hemiparalysis. The physicians hoped to fit her with a tracheostomy tube and send her to a nursing home. From my many conversations with my mother about quality of life and medical care, I knew that she did not want such a life. Yet my mother's wishes, as they were understood by her family physician and her daughter, were now subject to the approval of strangers: the cadre of cardiologists, neurologists, and pulmonologists who attended her.

None of these specialists knew my mother, and they all had their convictions about how to do best by her. Most notably, they varied in the latitude with which they were willing to interpret her wishes (I had become her spokesperson; my only sibling, an older brother, was out of the country). The variance was widest between my mother's wishes and those of the attending pulmonologist: He made it clear that his approach was conservative in such matters. He found it nearly impossible to accept that my mother would prefer death to living with hemiparalysis and a tracheotomy. Over the next several days, our conversations became terser and tenser as he raised such questions as whether perhaps I was an ageist, or an ideologue interested only in abstract principles. I asked the family physician whether another pulmonologist could attend the case, only to be told that all of the pulmonologists accredited to the hospital shared similar beliefs.

My stress built over the ensuing 5 days as my mother's distress was palpable. She successfully tore out her feeding tube only to have it reinserted and her restraints tightened. An attempt to remove my mother from the ventilator failed; her swollen larynx prevented her from breathing on her own. I had agreed to the removal on the condition that I be allowed to stay with her during the attempt. Afterward, the pulmonologist declared himself pleased that he had been able to reinsert her breathing tube, barely in time. He seemed, however, unaware of how agitated this process had left her. I asked that she be sedated, and an obliging nurse obtained permission for this.

The hospital increasingly came to feel like alien territory, full of medical strangers intent on maintaining my mother's vital signs at all costs. During her ordeal, my mother became increasingly frantic. She continually leaned against her restraints, trying to get her hand close enough to her feeding tube to tear it out again. My sense of being trapped in a nightmare intensified.

In the long days that I spent with her, I learned to read her increasing anguish through her refusals to have her mouth swabbed or to have the secretions in it suctioned dry. One afternoon, she rapped her cuffed hand angrily against the bed bars to get my attention, then motioned toward the tubes that she clearly wished to have removed. The next day, when I was holding her hand, she squeezed mine so hard that I winced in pain, and after that a breakthrough came: We were able to devise a mode of talking to each other.

In response to a yes or no question, my mother nodded or shook her head. Once this mode of communication was clearly established, I was able to ask my mother twice—with her nurse as a witness, and with 4 hours between each question—whether she wished to die. My very clearheaded and determined mother thus was able, finally, to assert herself for the necessary last time. The nurse informed the physicians of what she had seen. Then the wait began. The hours dragged by as the specialists were persuaded, one by one, to give their consent. Finally, a technician was allowed to pull the tube from my mother's throat. None of the physicians who had attended her was present.

In retrospect, as I review the events of those painful 5 days, there seems to be no simple explanation for what happened. Physicians are trained to save lives, and most of us would not have it otherwise. In their conversations with me, my mother's physicians related success stories: A paralyzed man with his faculties intact had lived a full decade longer with a tracheostomy; a woman (the mother-in-law of one of the physicians) with a condition similar to my mother's was still alive to that day, semiparalyzed, in a nursing home. I asked this physician whether he thought his mother-in-law was satisfied with this outcome. He responded, honestly enough, that he did not know.

These stories were intended to be helpful, to open up for me possibilities beyond the intensive care unit. But in the end they turned into so many cautionary tales. Most of the stories seemed to define success as survival and ended with the patient's departure from the hospital. The quality of life after that departure was, at best, moot. Everything I knew about my mother made me certain that she did not desire to continue her life in a semiparalyzed condition.

Subsequently, I wondered if the fact that so many physicians attended my mother may have restrained any one of them from helping me figure out how to be effective on her behalf. After all, critical care physicians must work with each other day in and day out. The cost of challenging the judgment or sensibilities of any member of the medical team must be high indeed. Any single case, by contrast, is a brief bird of passage.

In the weeks that followed my mother's ordeal, I listened, with the rest of the United States, to accounts of the deaths of Richard Nixon and Jacqueline Onassis. Because both of them had living wills, the commentators explained, their lives would not be prolonged by mechanical means. Angry and frustrated at the way my mother had died, I wondered: Do you have to be notable to be heard in our society?

All told, I think that my mother was fortunate. In the long run, her wishes were followed; 5 days in the intensive care unit compares favorably with the experiences of many other elderly persons. But the experience was harrowing, for her and for me. What is routine for hospital staff is all too often the first experience of its kind for critically ill patients and their families. I had a very steep and painful learning curve. This essay is written in the hope that hospitals will devise procedures so that patients and their families can, with less pain and perplexity than I experienced, decide when and how death arrives.