The truth about 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."

Many patients "have taken a turn for the worse . . .,"he wrote, "by forecast of what is to come."

For centuries afterwards, medicine continued to protect patients from the harshness of impending death. In 1847, the American Medical Association's first code of medical ethics argued that it is "a sacred duty . . . to avoid all things which have a tendency to discourage the patient and to depress his spirits."

"Paternalistic" is how Gregg K. Vandekieft of the Michigan State University College of Human Medicine summarized the no-bad-news approach last year in the journal "American Family Physician."

Things changed in the 1970s. Mirroring the civil rights and consumer movements, the patient autonomy movement was an attempt to give patients rights, including the right to know the truth. A 1982 review of studies, Vandekieft said, revealed that 50 to 90 percent of patients wanted to know their prognosis. Informed consent laws now clearly mandate that patients have a right to know in detail their medical condition.

"Imagine the loneliness, believing that you're dying and nobody will talk to you about it," says Leslie Francis, who teaches philosophy and law at the University of Utah and has studied bioethical issues.

Doctors these days tend to be honest with their patients, says Francis, although there are still gradations of honesty, and still concerns. There are patients who don't want to know a prognosis. There are cultures — Russian and some Southeast Asian, for example — that believe the head of the family should be told the bad news, and that they should decide how much to disclose to the patient. Mark Allison, chaplain at the University of Utah Hospital, can recount a few recent occasions where doctors were told by family members not to tell the patient the truth.

Doctors now believe, however, that patients deserve both a truthful diagnosis and a warning that the end may be near. The idea is to give patients time to put their "life in order," that catch-all term that includes not only finances and wills, but matters that may have little to do with order at all: things left unsaid, rifts mended, time spent hanging out instead of working.

Just as important, a truthful prognosis can change the course of treatment. "Decisions regarding treatment depend on accurate understanding of what's going on," says Dr. Mark Elstad, medical director of the VA Hospital medical intensive care unit. Family wishes notwithstanding, Elstad is unmovable on one thing: The patient deserves truth. But he says he tries to help the family understand why it's important. "I clearly know I will tell the patient, but I will spend some time trying to make everyone think I did it in the right way."

The job of the caretaker, says Salt Lake gerontologist Dr. Fred Gottlieb, is to help patients accept their illness. A truthful prognosis, he says, "means then they won't be beat up by tests and surgeries, they won't spend what time they have left recovering from useless tests and painful invasive procedures that will simply result in more time in the hospital rather than with the people they want to be with."

"The last thing we want to do is remove hope," says Gottlieb. "But there are times when people are going to die. Our hope is that they have a peaceful, graceful death."

Patients — and particularly their loved ones — may need time to get used to the idea, says Elstad. But when a physician talks through what can be done and what it's likely to yield, most soon shift expectations to providing comfort and an easier exit. "They understand if you can't make a loved one better, then the things we do in ICU effectively become torture. There's no reachable goal and it just becomes procedure."

And, too, patients want to know how to gauge the realistic outcome of treatments. Gottlieb, who was Winnifred Hsu's physician, points to a study recently reported in the New England Journal of Medicine that found patients want to know the likely burden of any given treatment, so they can weigh it against the possibility that it might extend their life.

In their quest to be truthful, doctors need to be careful that a prognosis not include detailed predictions about when the patient might die, says Margaret Battin, University of Utah philosophy professor and an expert on medical ethics. "A fatal diagnosis is a probabilistic account of likelihood, not a certainty," she says. "The trick is to keep hope."

Bernie Siegel, the Connecticut physician/author who gained fame a decade ago with his book "Love, Medicine and Miracles," is a champion of hope. "I know that I can literally kill people with my words," he said in a recent phone interview. "To say to somebody, 'you'll be dead in a month' — that can kill them." A good physician, he says, knows and explains that statistics are not about individuals. "This is not about lying to people. It's how you present the truth. It's about saying to the patient, 'even if only one out of 100 lived, do you want to make the effort?' " And when the patient's body can no longer make that effort, to know what to say next.

Siegel first wrote books about trying to help people not die. His new books are about "how to live until you die."

". . . after a long, valiant battle with cancer," obituaries often read. At some point, says Salt Lake oncologist Anna Beck, patients do best to shift from battling disease to focusing on the time they have left. Her patients may regret not being able to help around the house or bring in a paycheck. Beck reminds them it's likely that their fondest memories of their own mother might be a heart-to-heart talk or advice. "You can still do those things. I try to infuse patients with what they can still accomplish."

One of her patients made birthday cards for her five children, eventually making cards to last for the next 10 years. Other patients have made videos of themselves reading bedtime stories to their grandchildren, or have gone through scrapbooks identifying relatives whose names might otherwise be lost.

Hope for a dying person will be reframed, says Leah Malone, formerly a hospice social worker and now on the staff of Primary Children's Medical Center. There can be a shift to "hope for comfort, and for good times while the person is here."

Physicians and nurses have not been trained how to break bad news, says Chris Bennett, nurse ethicist at LDS Hospital. The right technique seems obvious — turn off the phone, make eye contact, avoid medical jargon, for example — "but not when you're very anxious about doing it, when you're very concerned about the patient," says Bennett. "You're at a loss for words."

Some find the task so difficult that Robert Buckman, a Canadian physician, authored a 1992 classic guide called "How to Break Bad News," as well as a small yellow pocket version that's handed out to physicians in training.

People with terminal illnesses often feel "less than," says Bennett. "They sometimes feel untouchable, or that people see them as someone already gone." That adds urgency to the need for an honest prognosis delivered in a compassionate way.

Truth is no less important when a child is dying, says medical social worker Leah Malone of Primary Children's Medical Center. "If you lie to somebody and they find out, then their trust is totally destroyed. You don't want kids to feel distrustful of their parents or the staff."

Dr. Jay Jacobson, who heads the Partnership to Improve End of Life Care in Utah, believes primary care physicians often "choke" when it comes to giving a painful prognosis, though they generally have a longer relationship with the patient and "multiple opportunities to talk about prognosis." That's why they should, when possible, be the ones to break bad news, he says.

Intensive care units are full of people, he says, who are very, very ill and neither patient nor family understands what's going on.

Ultimately, such unclear communication may be nearly as unkind as the disease itself, leaving a family, and perhaps the patient, surprised and devastated. "Each time they go to the hospital, they have come home. They are not prepared that one of the visits is not going to be successful," says Jacobson.

Patients also need to know they aren't being abandoned after the diagnosis and prognosis are given, Gottlieb says. "They need to know we'll still be there, that they won't die alone and in pain. If we do our job right, there's never a need for the Kevorkians."

When Sorenson's mother died, he sat with each family member. "I will answer each question you have. Take as long as you want," Sorenson quotes him. "He also came to the house to visit with them" before Hsu died.

Because family members are sometimes the ones who have trouble letting go, a patient's advance directive about future care is important, he says. "A person may be at peace with what's occurring, but a family member is not ready. People talk out their own unresolved issues with loved ones during the dying process."

E-mail: lois@desnews.com; jarvik@desnews.com