Dying Wishes Seattle Doctor Hopes His Book Will Help People Take Control Over How They Die

The elderly man knew the tube in his throat was all that kept him alive. But he was terminally ill, in pain and ready to die.

Doctors met with family members, then agreed to carry out the man’s wishes. In the morning, using anesthesia, they’d remove the breathing tube.

Then came the angry grandson: “Oh no, you’re not!”

An emotional debate ensued, and the tube stayed. “That’s the way it always is,” says Dr. Thomas Preston, who was the older man’s physician. “The person who says don’t let him die always wins. If you’re a doctor, in the back of your mind is the thought: `This kid will take me to court.’

“Most doctors back off. I did.”

Such nightmarish hospital scenes have long troubled Preston, a retired Seattle cardiologist. They also inspired him to write a new book he envisions on your shelf among the dictionary and other reference manuals. It’s called, “Final Victory: Taking Charge of the Last Stages of Life, Facing Death on Your Own Terms.”

And it’s something very few people do well, Preston says.

Planning for death is a hot topic at the millennium, as baby boomers face the deaths of aging parents and machines extend life longer than ever. Nearly 40 million senior citizens live in the United States, a number expected to double in the next few decades. Bill Moyers brought end-of-life issues to the public round table this month with the PBS series “On Our Own Terms.”

But while people say they want more control over their deaths, few actually know how to go about it.

Americans are more likely to discuss drugs and sex with their kids than talk about death with a terminally ill parent, according to a 1999 poll by the National Hospice Foundation. Fewer than a quarter of those polled had put in writing how they’d like to be cared for at the end of life.

The communication breakdown starts in the home and works its way through doctors’ offices and medical facilities, says Preston, a 67-year-old professor of medicine at the University of Washington.

“When I was a kid, you’d go to the hospital and visit somebody who was dying. On the ride home, nothing was said. No further discussion,” says Preston.

“In our society, it’s still pretty much a taboo.”

Even doctors are often more comfortable talking about fighting terminal illness than how a person wishes to die. Yet there are frequently choices at the end of life: hospital or home, ventilator or none, even at what point a person gives up food.

But when those critical moments arrive, people are often incapable of making decisions for themselves. Or their choices catch relatives by surprise, and the dying person’s wishes fall by the wayside.

Preston’s 272-page book, due in bookstores Sunday, attempts to eliminate last-minute surprises, with detailed sections titled Before You Get Sick, After the Bad News, and The Terminal Phase. He even explores what he calls “the great unmentionable” - assisted suicide.

It’s not something he pushes, says Preston, although he was a plaintiff in a lawsuit challenging Washington state’s ban on physician-assisted suicide. In 1997 the U.S. Supreme Court upheld the state law.

“I’m not encouraging it. I’m just saying it’s out there if you want to think about it,” says Preston.

“It’s a fact of life. People want to know about it.”

His main objective is to teach people to minimize suffering as much as possible, says Preston. And there are numerous ways to go about it.

The first step is to start planning while you’re healthy. That means accepting the fact you’ll die someday and learning your options.

For instance, stopping life-sustaining treatment can mean “pulling the plug” on a ventilator. But it can also mean removing a feeding tube or stopping intravenous feedings, kidney dialysis or life-sustaining drugs.

People can also put their wishes in writing, making decisions easier for both doctors and relatives later on.

Preston suggests assigning durable power of attorney to someone you trust to make decisions when you can’t. He also recommends a living will, which tells doctors which life-prolonging treatments you want if you can’t speak for yourself.

In Spokane and Whitman counties, doctors are test-driving a new form they hope works even better.

That’s because they realized advance directives often weren’t followed, says Dr. Bill Bender, a neurologist who chairs Deaconess Medical Center’s ethics committee.

The forms are frequently ignored if a patient is suddenly transferred - hospital to nursing home, for instance, or even house to hospital. Medical workers sometimes feel it’s their duty to do everything possible to keep someone alive or that they’ll be sued if they don’t, Bender says.

Not so with the new Physician Orders for Life-Sustaining Treatment, which translates patients’ wishes into doctors’ orders, says Bender.

The two-page form lists such specifics as oxygen, treatment of airway obstruction, IV fluids, medication, and cardiac defibrillation.

“There’s no room for interpretation,” says Bender.

Specifics are key during fast-paced crises in emergency rooms or intensive-care units, says Preston. As often as not, decisions are made by “some doctor on call you’ve never met before who gets called in the middle of the night.”

Even patients’ regular doctors can feel caught in the middle at the end, says Dr. Jeff Clode, a Spokane general internist. He recalls an elderly patient who made it clear she wouldn’t want to be kept alive with tube feedings.

Then a brain-stem stroke stole her ability to swallow. Relatives, intent on following her wishes, argued against a feeding tube.

But Clode was torn. He knew patients with brain-stem strokes sometimes regain their ability to swallow later.

At Clode’s insistence, the tube remained for a few days. Shortly after it was removed, the woman died.

Decisions like that are tough on everyone involved, says Clode.

“It’s a very tender thing,” he says.

One option doesn’t appear on any advance directive, and that’s physician-assisted suicide. But Preston tackles the subject head-on with advice such as: “Ask if and how you can get the necessary drugs. Tell your doctor you must prepare now, not later, even if you may never use the drugs.”

He also suggests subtle questions to learn early on if doctors will help without putting them on the spot.

“A doctor might say she is open to all considerations at appropriate times, but this is as far as any physician should go,” writes Preston, who notes that doctor-assisted suicide remains illegal in all states but Oregon.

That doesn’t stop people from asking, says Clode, the Spokane internist.

“All of us have people ask us that,” he says. “Once a year, somebody asks for pills.”

But, he adds, “If you can promise people symptom control, most of the time people don’t want to do it (assisted suicide).”

No matter what end-of-life choices a person makes, nothing is more important than discussing them with loved ones, Preston says. And not just because they otherwise might obstruct the best-laid plans.

But how to broach the taboo subject?

Richard Bartley, chief operating officer at the National Hospice Foundation in Alexandria, Va., suggests bringing it up in a quiet, comfortable setting - perhaps the living room.

“Ask for permission to talk about it,” he says.

Then explain why planning for death is important: “If you ever were sick, I’d be afraid of not knowing what you want.”

Strike? Try again later.

“It’s normal to encounter resistance the first time you bring it up,” says Bartley. “Very few people want to admit that they’re going to die.”

When people explain their desires beforehand, relatives are more confident and less guilt-ridden when following through with the dying person’s wishes, says Preston.

“What family member wants to be the one to pull the plug? They have to understand it’s OK with the patient,” Preston says.

“The patient has to say to the family it’s all right for me to die and for you to help me.”