Unit 17
A Harder, Better Goodbye
Mother complained of a pain in her ribs. She was a yoga lover, an ocean swimmer, a woman who at 72 looked ten years younger. She thought she had pulled a muscle. But the pain refused to go away. Tests revealed that cancer had moved to her ribs and spine.
She and my father had been planning summer vacation. Now they were planning the remaining months of her life. She made it clear she did not want to remain in the hospital. She wanted to go home.
Hospice, we were told, could help us care for Mom at home. Suddenly hospice became the center of our lives. A few times a week the hospice staff -- doctor, nurses, social worker -- would visit our home, making sure Dad and I could handle the bedpans, the pain killers and the reality of Mom's dying.
March, April, May. Each month, each week, each day was a diminishment. Mom was confined to downstairs, then to her bedroom, then to her bed. Dad brushed her hair. I read to her. We examined family photo albums. As we flipped through these Kodak moments of life now drawing to a close, I would comfort myself: At least we are home.
Our biggest fear was that Mom would experience unbearable pain. But she did not. Painkiller helps. It was in those last days that hospice was of particular help. I had not seen anyone die before; I did not know what to do. Use swabs to wet her mouth, the nurse told me. Hold her hand. Her senses are dimming, but hearing will linger. Tell her you love her.
She died on Father's Day. I had bought Dad a bottle of cognac, which we were drinking when we heard her breathing stop.
Serious illness is a journey to a foreign country. You do not speak the language, the people are strangers, and you cannot know how you will behave until you arrive. But inner strength, too, is unpredictable. For after the night of Mom's death when I thought I could not go on, we went on. That could not have happened without hospice. The hospice nurse had made her comfortable; the aide had set her hair.
Deaths like my mothers prove that hospice can make death not just an ending but a kind of culmination. If you control symptoms, if you provide support to patients and families, you can see great growth at the end of life. There are many alternatives to suicide even at the end of life. Hospice offers the hope that death, while inevitable, need not be impersonal, need not be unbearable. The argument over assisted suicide may have helped Americans recognize the ways in which medicine, so good at so many things, fails the dying. But it also prevents us from meeting the real challenge of providing decent end-of-life care. |