Talking about death can make issues easier
Part Two
By JENNY STRASBURG
Scripps Howard News Service
Vilma Medrano has been speechless for 18 months.
These months since Lou Gehrig's disease stole her voice have been the worst of the illness's five-year assault.
Most words she would have chosen to talk about death, and her 43 years of life, have gone unsaid.
Words to describe the taste of death approaching - enchiladas pureed into brown paste to help her eat as the disease thickens her saliva and makes it difficult to swallow, choking her.
Words to express her fear of pain.
Words for what she misses most, trapped in a body she can't move. Things like hugging her son and daughter, who are 7 and 9. Her old government job in Austin. And seeing and hearing the surf break at Padre Island.
Medrano deteriorates week to week. Her lungs lose pressure; her neck grows weaker, her breathing more labored.
But as death swallows her, Medrano's friends and family are silent. She is unable to speak about death; her family won't.
The silence in the back bedroom of this small house in suburban Corpus Christi is shared by families and patients everywhere. In homes and hospital rooms emotions muffle conversations that could comfort the dying.
It's not only family and friends who go mute in the shadow of death. Frequently it is the doctor. Unable to heal every patient, doctors are prone to deflect the subject, viewing death as a failure.
"Our technical capability to prolong life has outstripped our moral sense -- our sense of what's right and wrong regarding the end of life," says Ronald A. Carson, who is surrounded by doctors as director of the 25-year-old Institute for the Medical Humanities at the University of Texas Medical Branch at Galveston.
Physicians bear society's expectations, Carson says. "If death is impending, we take people to the hospital. We want them 'fixed.'"
Scholars of dying say death is often most painful for those who deny its approach.
Medrano already has lived a year and a half beyond doctors' predictions. She could stop breathing any day, and she would die.
She knows that in her bedroom, with its angel statuettes and flickering Jesus candles on the dresser. Friends and family react by keeping the harsh reality of some words out of the home.
In houses across America, the language of death becomes a vocabulary of denial. We substitute gentler words. We say "passed away" instead of "died." "Deceased" instead of "dead."
In Medrano's bedroom you don't hear "die" or "dead," words about caskets or goodbyes. Such conversation is confined to talk over glasses of iced tea at the kitchen table down the hallway.
"We don't talk too much about death," Medrano's mother, Otila Cuellar, says in a low, sad voice. "I try not to. I can talk with anybody else. With her I can't."
The quietest one when death comes up is softspoken, reflective Natassia, who has her mother's hazel eyes and thick, dark hair down to her waist.
Natassia at first listens quietly to adults talking one day. Then she objects defiantly: "I don't want to be here when my mother's dying. I can come to the funeral. But I don't want to see her dying."
Medrano would rather these words be spoken in front of her.
"There is a sense that I have acquired since the beginning of this illness," she communicates silently, one letter at a time, through an alphabet board held by somebody else.
"I'm more sensitive. (My) hearing (is) also," she says. Sometimes she even hears the kitchen-table discussions.
To signal what letter she wants on the alphabet board, Medrano raises her eyebrows. The listener taps rows of letters with the tip of a ball-point pen. These conversations are tedious, tiring. Medrano chooses words precisely, like a poet. She speaks in silent, free verse.
"Some people are afraid of death," she says. When they enter her room and see her propped up against the pillow, she says, "(It's) in their eyes, the energy around them."
Medrano repeatedly has compelled her best friend, a close soul since childhood, to discuss funeral plans. "She didn't want to talk about it," Medrano says. "I'd force the subject. She'd say, 'We're not playing rehearsal.' So she still doesn't want to talk about it."
Medrano understands. There is no cure for amyotrophic lateral sclerosis, the disease that has ravaged the motor neurons of her spinal cord, crippling her muscles. But she wants to debate the virtues of cremation vs. a traditional burial.
Talking of this, she tries to inhale deeply. She manages only a labored sigh.
If she could just talk.
In libraries and bookstores, hundreds of books offer advice -- how to prepare for death, think about death, talk about death.
Elisabeth Kubler-Ross is widely credited with launching a national dialog in 1969 with her book On Death and Dying. Life Magazine called it "a profound lesson for the living."
"The more we are making advancements in science, the more we seem to fear and deny the reality of death," Kubler-Ross wrote. "How is this possible? We use euphemisms, we make the dead look as if they were asleep ..."
In a society more competent at such discussions, these volumes might go ignored. Instead, they become best-sellers; they inspire social movements and college courses.
In the past year alone, two dozen new nonfiction books about death have been published in the United States, according to Books in Print listings. A search for "death" reveals some 800 nonfiction titles currently in print.
Tuesdays With Morrie, sportswriter Mitch Albom's nonfiction account of his relationship with a college professor dying of Lou Gehrig disease, has been a New York Times best-seller since October 1997.
At Texas A&M University-Corpus Christi, Paula Biedenharn's course Death, Dying and Suicide is so popular, she has to turn students away every semester.
At 33, with a doctorate in developmental psychology, the energetic professor isn't there to provide therapy, although she imagines a sort of therapy happens.
Death, she says, "is part of life just like any other: birth, marriage, children, death. But I think most of our culture sees it as, 'Avoid it at all costs.'"
"Apparently," Biedenharn says, "students love to talk about (this) in a setting that's not real depressing."
Her students visit Seaside Memorial Park and Funeral Home.
"It's always their favorite thing about the class, the field trip, because they had no idea," Biedenharn says. The embalming process engrosses them, as do the crematorium and $10,000 caskets.
"This is something nobody thinks about," Biedenharn says. "But they go home and start talking." They ask parents and spouses: If you were terminally ill, what medical care would you want? Do you have a document called a "living will" to specify your wishes?
Language, Biedenharn says, holds death at a distance.
"Most students will not say, 'This person has DIED,' or, 'This person is DEAD.' " Instead they say "gone to heaven," "passed away," "passed on."
Medical professionals avoid words, too. Carolyn Jaffe believes a slight distinction in words symbolizes a significant distinction in attitude. "I've heard so many nurses say, 'They passed away.' It's a ridiculous euphemism," says Jaffe, the first hospice nurse in Denver, now retired. She helped found Hospice of Metro Denver in 1978.
"The patient didn't 'pass away.' They died. . . . Everyone is so afraid to say it even though we are all headed that way. No one wants to talk about it. No one wants to listen. No one wants to get involved."
A poll for Scripps Howard News Service in June showed 81 percent of American adults have never talked with their doctors about the medical issues of dying. End-of-life philosophers agree that if more people discussed death and lifesaving medical measures, fewer would be plugged into life support against their will.
Such discussion might have helped one Denver family avoid a wrenching family dispute.
Days before Christmas, Monica Hankins, 40, delivered a healthy baby, but Hankins suffered complications. For more than six months, she lay in a persistent vegetative state, receiving food and oxygen through tubes.
Her parents wanted to disconnect the food. Her husband didn't. A judge was asked to intervene, but Hankins died on July 26, before the judge could get involved.
Had Hankins prepared a living will or advance directive, her family might have known her wishes.
Words matter.
Beyond medical classrooms and hospital ethics committees, death is still a nontopic, Carson says.
"There need to be discussions in the public at large. Until there is an informed public discussion of these issues, we're not really going to get anywhere," he says. "Physician-assisted suicide is the most recent way that we as a society have tried to solve the issue of a decent death."
Words count.
An accident victim is brought to the ICU. He is brain-dead. He will never again think, breathe or otherwise function without machines.
Here's where doctors must choose words with extreme delicacy, says Dr. Eugene V. Boisaubin, an internist who teaches medical ethics at the Galveston school.
He poses the scenario to students.
"What commonly happens is families say, 'Well, I want everything done.' Rule No. 1 is that you never accept that comment on face value, that you always say, 'Now, let's talk about what EVERYTHING means.' Because in many ways, their comment to 'Do everything' is perfectly natural."
Even somebody who speaks medical-talk -- a foreign language to most -- would lose composure amid such trauma, Boisaubin says.
"I mean, if I get paged now and my wife has been involved in a car accident in Houston, and she's critically ill at a hospital, and they say, 'What do you want us to do, Dr. Boisaubin?' (I'd say) 'Everything!' I'd worry about anybody who didn't say they wanted everything done. . . .
"Now, does that mean that literally, everything conceivable in the Western world in medicine ultimately is going to be carried out? Probably not."
From a shelf in his office on the ICU floor, Boisaubin pulls a popular medical text and turns to a chapter titled Giving Bad News. "This would not have been in existence four years ago in the text," he says.
Empathy and subtlety are products of maturity. The students in Boisaubin's ethics classes are fresh-faced, mostly in their 20s, and have been in school most of their lives. Death's attendant motifs -- old age, disease, suffering -- are distant notions.
"They have not come to grips or even begun to think about these issues," Boisaubin says. "They don't know about their OWN feelings."
As a first-year resident in internal medicine at the Galveston hospital, Dr. Valerie Bauer, 30, is learning to communicate about death.
"The elderly talk to us about how they want to die," Bauer says. "Their concept of mortality is closer in their minds than (it is for) our youth or our middle-aged population. They are extremely specific and articulate very clearly and thoroughly about what they want and what they do not want. In those cases, to me, it's much easier to do what is right on behalf of them than it is for someone who had an immediate stroke, who never talked about death to their family."
This doesn't surprise her.
"I mean, I don't know what I would say if somebody said, 'Well, how do you want to die? What do you want in your advance directive?' I've tried to ask myself that just as a mental exercise, and I don't know. I just honestly don't know.
"Youth is scary. And oblivious."
In Leo Tolstoy's novella The Death of Ivan Ilyich -- required reading in some medical ethics programs -- Ilyich is an unreflective, materialistic high court judge who suddenly faces his own mortality.
He can't believe, after feeling so in control of his life, courtroom and destiny, that death applies to him. Tolstoy wrote the story 112 years ago, but his fears and language are agonizingly direct -- and timeless.
Physicians such as Bauer and medical ethics teachers across the nation want people to consider death before Ilyich did, before it's on the doorstep.
"You die well if you learn, as a human being, to open yourself up to what is ultimately important in your life, to resonate with a power outside of you," says Thomas R. Cole, a humanistic gerontologist at the Galveston medical school and author of The Journey of Life: A Cultural History of Aging in America.
"When I talk to my clinician friends," though, Cole says, "they tell me most people that they take care of die in fear or die in denial."
Doctors who care for dying patients must strike a delicate balance; they must share the possibility of death but not tell too much too soon, Carson says.
"It's a matter of responsibility. Who's responsible for bringing up the taboo subject?" he says. "Yes, the doctor has the responsibility to bring this up, to open the door, and then be responsive. But not to bludgeon (the patient) with the truth."
David Callan of Cincinnati, a clinical social worker supervisor for cancer patients and their families, says words between doctor and patient are often imprecise.
Too clinical, detached, confusing.
"Doctors -- not all doctors -- present the pros and cons of a particular treatment," Callan says -- but then they depend on statistics instead of answering more human questions: "What does this mean to me? What will my quality of life be, vs. my quantity of life?"
Vilma Medrano has listened to plenty of doctors tell her how death will approach. The gradual weakening of her legs and arms. Muscle cramps. Slurred speech, then no speech at all.
Life in bed. Inertia. Oxygen tubes in her nose.
Medrano says she has had enough time to think. She is ready to die.
She had three years to talk about her wishes before she lost her voice: Never attach her to a respirator, she said. "I want to die naturally," she explains.
She has filled out the paperwork that says so.
She has told visitors who'll listen that she wants to be buried near water, in a cemetery one block from Corpus Christi Bay.
And with patient words, she can help guide how her children see this death. Medrano never forgets they will remember her most clearly as she looks now.
"One thing you have when you're dying is a bully pulpit," observes Callan, in Cincinnati. "Whatever you write or whatever tape recording you make at this time in your life for your sons and daughters is going to be dynamite. They'll hang on every word."
"I told them that I always (will) be in their hearts," Medrano says. "I would become an angel to be there for them."
One day, her son Carlo says somebody told him there was no such thing as angels. His response echoes of his mother's own words: "Don't worry, Mom," he says. "She will know when she becomes one."
One of Medrano's four little brothers, Homer Gonzalez, 41, says too much talk of death feels like auiescence.
"I'd rather not talk about it for the simple reason that I really haven't accepted it," he says. He is sitting in a chair beside his sister's bed.
She smiles faintly, the only way she can, and watches his face.
"I'm still looking for that miracle," he says. "I still have to have something to hold onto."
Medrano gazes at the alphabet board, wanting to respond.
"I hold onto hope for a miracle, but I am also realistic," she spells out.
"Ready to go on.
"Transition prepared."
Jenny Strasburg writes for the Corpus Christi Caller Times.
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Tomorrow: Groups are working to bring the promise of "a good death" within the reach of all Americans. Some help with the decisions you need to make.