At the End of Life, Do We Need to Hide?

when death comes
like the measle-pox;¹

"I don’t want you present when I die,” my mother told me. I was hurt that she barred me from being with her while she was dying, but I realized that she was afraid of losing control, losing her dignity, even in front of me.

My mother, a beautiful, meticulous woman, needed to be in charge of her life. When she aged and became infirm, she found it difficult to accept the help of home health care. She always criticized the nurses who washed and bandaged her because they did not perform the tasks the way she, herself, used to accomplish them. She felt as if the boundaries of her body had been blurred, had been invaded. She did not want me to witness her deterioration.

Death is ever-present in all our lives, and intimately, constantly in my life as a physician. In paintings, in movies, and in stories, the gathering of the clan at the passing of a member is portrayed as the dignified, desirable ending of a life. I have learned from being with my patients that having the family gather around the bed at the time of dying is not always desirable. At times when illness has caused distortion of the body, hiding becomes an urgent necessity. There are patients whose need for privacy trumps the need for family and friends to say goodbye and to be with them in their last hour.

My sister, Beate, who contracted lung cancer, developed superior vena cava syndrome before she died. This caused her face and neck to swell grotesquely. I was sad to see the familiar face become unrecognizable. Beate would look in the mirror, shake her head, and tell me, “Don’t let Hannah and Jonathan come.”

She did not want her children to remember her with an edematous, swollen face. I was the only person she could tolerate in her room, the only one who was allowed to care for her. She told me, “I don’t know what I would do if you weren’t a doctor and weren’t used to seeing this kind of disfigurement.”

It was hard for me to explain to her son and daughter why she needed to hide, and why she found it intolerable to have the world view her ugly and transformed. When she died, I was the only one in attendance. As she had stipulated, her children did not see her body after her death.

Similarly, I had a patient who developed a parotid tumor, which eventually ate away part of her face, leaving a salivary fistula. She refused home health care, hospice, and other help. She wanted no one to see her mutilated face; she wanted no visitors. She would let only her husband look after her. During one of my house calls, I asked her if she would let one other person come into her home to occasionally relieve her husband so he could take a walk or go to the barber. She said, “No, only if he urgently requests it.” I respected her wishes and her need for privacy. Her husband remained her sole caretaker until she died.

My most memorable patient, who withdrew from the world because of her illness, was an elderly lady whom I only saw one time. Her granddaughter, Natalie, called me to ask if I would make a house call because her grandmother, Mrs. Jennings, was in severe pain. When I entered the dark, one-room hut, the odor of decay was unmistakable. A friendly voice, emanating from a face gnawed away by skin cancer, greeted me. We spoke, and I left pain medication and a promise that I would teach Natalie how to administer the analgesics. Specifically, I had to promise not to send any visiting nurses or home health aides.

To the dying, our good intentions, our loving ministrations, are not always welcome. The rejection we experience as caretakers and family, when we cannot accompany those we cherish during their final moments, may originate from their need for privacy. Even though it is painful, those left behind, the living, must accept and respect the exclusion as the autonomous choice of the dying.

All names have been changed for this article.