The truth about dying

3rd in a 12-part series

Claudia West is dealing with the one certainty she's found in an unpredictable illness: She's dying.

West, 47, has multiple sclerosis in a form that's burning through her quickly. Diagnosed just four years ago, she's now nearly bedbound, in hospice care.

When doctors told her she was dying, she felt liberated, she says. Now, she and her husband, Rick, and their children can talk about what's happening to her body in ways they couldn't before. No one's saying "Don't even think such a thing" about her eventual death. She's done paperwork and had crucial conversations with people she adores, including the father to whom she was not close growing up.

She even summoned up the strength to make a tiny angel quilt, which hangs over the bed in her room. She carefully stitched the bright fabric, adding a whimsical fluff of synthetic hair, shortly after her doctors told her she was dying. It's a way for her to tell her daughters that she's changing worlds soon but will continue to love and, she believes, watch over them.

Care changes when focus shifts from seeking a cure to acknowledging death's proximity. Much of the change, says West, is for the better.

That makes sense to Virginia Sorenson, whose mother-in-law, Lois, died several years ago of complications of diabetes and cancer. Sorenson learned the truth about Lois's prognosis accidently, during a conversation with a nurse at the rehabilitation center where Lois had gone after a surgical incision wouldn't heal. The nurse sounded casual as she said "She's dying," tossing Sorenson the chart, the word terminal written on it. She likely thought the family already knew.

"No one even told us she was that sick."

Sorenson and her husband wanted a dignified death for Lois, in a place where she had been happy. They moved her back to Holy Cross Hospital (now Salt Lake Regional Medical Center), where the nurses sang big band tunes with her and put flowers in her hair every morning.

Sorenson's own mother, Winnifred Hsu, died of cancer in December. Her doctors told Hsu and her family the truth as Hsu's condition worsened. Sorenson was grateful that the doctors weren't afraid of the word "dying."

The medical profession has a long history of vagueness when it comes to really bad news. Some 2,400 years ago, Hippocrates not only gave doctors an ethics oath, but advice about a blurry prognosis. Conceal "most things from the patient while you are attending to him," the Greek physician advised. "Give necessary orders with cheerfulness and serenity . . . revealing nothing of the patient's future or present condition."