July 3, 2000 -- The conversation about death loomed, the words waiting to be spoken. Roberta, a lifelong spiritual seeker, an opera singer, and an articulate, emotionally aware woman, was dying of cancer at the age of 76. Would she like to speak with the hospice chaplain? She said yes. The chaplain, Heather Certik, arrived, but Roberta turned away.
"I had the feeling that Heather's coming over made Mother realize that maybe her time was winding down," says Michael Messer, Roberta's son, who moved to San Francisco to care for his mother before she died last fall. "I don't think she wanted to face that. She wasn't ready to go."
The conversation never happened, with anyone. "I wanted to talk to her about death, but there was always this feeling of hope that she was going to make it," says Messer.
Talking about death at the end of life is a difficult, awkward proposition for both the dying person and for family members. Each may have different reasons for wanting to stay silent or to talk. Some family members say nothing, out of fear of saying the wrong thing. Or the dying person says nothing because of a superstitious belief that to acknowledge death is to hasten it. And family members often want to shield their grief from the dying person, while the dying person similarly wants to protect family members.
No wonder one out of four Americans over the age of 45 surveyed in a 1999 telephone poll conducted by the National Hospice Foundation say they would not bring up issues related to their parent's death -- even if the parent had a terminal illness and less than six months to live. But those who work in the field of death and dying emphasize that acknowledging the end of life and saying goodbye, in whatever form, is an emotional and even a physical balm, reducing stress and depression.
Breaking the Ice
"Communication is what human beings do, even if it's just holding someone's hand," says Steven J. Baumrucker, MD, associate editor in chief of the American Journal of Hospice and Palliative Care. By all means, Baumrucker urges, speak up, ask what kind of care a dying person would like, say what you've always wanted to say. Often, there is a need to address spiritual matters, he says, recalling a man with liver cancer who was in a frenzy of distress until he was baptized three days before he died. Family disagreements also can be pressing. "After family members are dead is not a good time to try to reconcile with them," he says.
But how to begin? The Rev. Ronald Purkey, executive director of the Hope Hospice in Rochester, Ind., says the first step is to find out what the dying person is thinking. "I ask, what do you think is going to happen with your illness?" he says. If the patient replies, "Getting better every day," as one of Purkey's terminally ill patients did recently, there's probably little chance of a conversation at that moment. Yet as death approaches, the barriers usually break down, he says.
To patients and families, he gives a popular pamphlet called Gone From My Sight by Barbara Karnes, which outlines the emotional and physical changes that occur as a person moves closer to death. "When people first get sick, they want to take care of the family members," says Purkey. "The closer they get to death, the more introspective they are." This is often the opportunity for meaningful discussion. "You can turn to the individual and say, 'How do you think you're doing right now?' " says Connie Borden, RN, executive director of Hospice by the Bay in San Francisco. "If the answer is, 'I'm not doing so well,' the individual is looking for a chance to talk. Don't hush the person up. Try to ask, 'Is there something you want to say to me?'"
Winding Down
There can be moments of surprising bluntness. Elinor Sheldon, Roberta's niece, told her aunt that a family member was going to buy Roberta new pajamas. Roberta's reply: "She can buy me the pajamas to be cremated in."
As death approaches, words become less important, according to hospice workers; touch and silence become more meaningful. For Roberta's family, music remained vital. Sheldon had tried to talk to Roberta about the differences they'd had and was rebuffed. Finally, she had the conversation she'd wanted by singing "Amazing Grace" to her aunt, who lay in bed, close to death. "I wasn't sure I could do it, but I did," she says. "I felt she could hear me. She squeezed my hand."
Jane Meredith Adams has written for WebMD, Health, The Boston Globe, and other publications. She lives in San Francisco.