Two uncomfortable stories of dying

Journal of Family Practice, Dec, 1993 by Peter Curtis

Reflection, we are told, helps understanding and leads to wisdom. Recent publicity regarding euthanasia has led me to reflect on two events that occurred some years ago in which, by action or inaction, I may have contributed to the death of the patient and the suffering of the family. In each family, someone was dying of amyotrophic lateral sclerosis. In each circumstance the resolution involved elements of euthanasia and suicide. Because communication with either patient was almost impossible, the decisions and events that took place could not be easily discussed or mulled over in advance.

In retrospect, there was a strange symmetry between these families. Both were financially secure, and in each the husband was employed by a university. Their medical management had been directed to me after neurologists had confirmed the diagnosis and given the gloomy prognosis. There was little more the specialists could offer, and palliative primary care was not their field or interest. Both cases presented exhausting challenges. In each I was confronted by a patient whose mind was trapped within a useless and uncommunicative body, itself trapped and dependent within a family.

Henry's Story

In stark contrast to the other well-manicured lawns of their upper-middle-class neighborhood, the overgrown grass and unkempt appearance of the front yard was an external clue to the presence of a serious and all-consuming chronic disease within the family. So I did not really need to know the number to find the house where Henry and his wife, Anna, lived. He had been Chair of the Department of Romance Languages, once a towering intellect, iconoclastic and domineering. Now he spent most of his time slumped and wasted in a wheelchair, playing chess with volunteer graduate students, listening to classical music, and writing his autobiography.

When I first met him, he had completed more than 300 pages, each sentence painfully and slowly spelled out to a student using an alphabet board. Henry could hardly speak at this stage and signaled his chess moves or the selection of letters and words with a coded blink of the eyes -- one blink for yes, two blinks for no. The determination and control of the man was astounding, as was the intense anger that I suspected seethed unremittingly at the injustice of his imprisonment. Even though I visited him regularly at home -- toward the end, on a weekly basis -- he never thanked me for my efforts.

I actually disliked him for the way he treated his wife, Anna. Their daughter had left home and I never saw her. I believed that she could not bear to witness her father's cruel disease and also the cruel way he treated her mother. Anna was gentle, artistic, and nurturing, and totally enslaved by her husband and his suffering. Their house was full of light, blazing with color and lush with hanging greenery. For months on end, he insisted that she never leave his side. Other caregivers would not do. It was quite openly acknowledged that her dedication was payback time for all the years that he, as head of the family, had provided for her welfare.

Inevitably, he ended up totally bedridden in a local nursing home, deteriorating to the point of almost marginal breathing. In fact, he could only move his eyelids. There came a day, on one of my visits, when I noticed a special look in his eyes, soulful and earnest. I held the spelling board, and with great difficulty -- even his eye blinks were now difficult to decipher -- he signaled the words "KIL ME." After my initial surprise and shock, I agreed to try to help him and ordered that he be given heavy sedation that evening in the hope that it would allow him to slip into anoxia and die peacefully. He died that night, found with his nose and mouth pressed into the pillow. The next day, as I went about my routine work, I had misgivings about what had happened, but overall felt I had done the right thing for him.

But even in his death Henry amazed me with his determination. It turned out that, by error, the sedative I had ordered had not been given. How did he die that very night? I believe that once he had decided to terminate his miserable existence (and since his doctor had not helped him as promised), he used immense will and effort to roll his head sideways and suffocate himself in the pillow.

Beth's Story

One year later, in another part of town, the sunburned grass and weeds stood a foot high in the Adamses' yard. Beth Adams had had the disease for 6 years and now could not write or speak. She spent most of her time in a wheelchair or in bed. As in so many people with amyotrophic lateral sclerosis, the muscle wasting had produced a gaunt, masklike expression of the face, which in her case was made all the more desperate by the absence of teeth except for two large upper incisors that protruded below her upper lip. Beth's husband, Lee, was a biochemist, whose scientific rigor seemed to spill over into family relationships, evidenced by his rigid control and lack of emotion.