Very Timely.....

Putting your wishes in writing
11:14 AM CST on Thursday, March 24, 2005
By KAREN M. THOMAS and MICHAEL PRECKER / The Dallas Morning News

Nearly a month ago, right before surgery, Fred Bailey of Dallas made a decision.

He had had a mild heart attack in 2000 and a triple bypass after that. Now doctors were preparing to install a device in his chest to automatically shock his heart if it beat irregularly. When a staff member at Baylor University Medical Center asked him a routine question – whether he was in interested in a living will – Mr. Bailey said he was. After speaking with a hospital chaplain, he signed an advance directive asking doctors not to resuscitate him if the worst should occur.

"I freely signed," says Mr. Bailey, who's 53. "I have children, grandchildren and living parents. I don't want them to go through anything that remotely resembles that situation in Florida. ... The main thing is that I don't want to be in a vegetative state or a coma."

"That situation," as Mr. Bailey puts it, is the kind of unhappy news that brings advance directives, also known as living wills, back into the spotlight. Terri Schiavo, whose heart stopped in 1990 because of a chemical imbalance when she was 26 and who has been in a vegetative state since, left no answers to crucial questions: Would she want to live this way? What should be done to keep her alive?

The result has been a bitter legal battle between Ms. Schiavo's husband, who wants her to be allowed to die, and her parents, who say there is still hope for recovery. After a court ruled that Ms. Schiavo's feeding tube could be removed last month, Florida Gov. Jeb Bush won legislative approval to restore the tube and prolong her life.

A living will might have prevented the dilemma by making Ms. Schiavo's intentions clear. But when Dallas attorney Shelly B. West and geriatric care manager Kay Paggi make that point and advocate living wills, they run into frustrating, illogical problems.

"Most of my clients are quite convinced that they're not going to die," says Ms. West, who handles many family law and probate cases. "I have to get them past the idea – it's not about them; it's about taking care of their survivors."

Ms. Paggi, who works with elderly people at several facilities in Richardson, says the myth persists "that as soon as you write your will, you will die.

"Everyone knows intellectually that is not true, but you still grapple with that," she says. "It's the same thing with the living will."

Making your wishes known in advance, Ms. West says, "is such a simple, loving thing you can do for your family."

At Aging With Dignity, a nonprofit organization based in Tallahassee, Fla., that distributes a living will form nationwide called Five Wishes, the Schiavo case has sparked a surge of interest.

"We've noticed 10 times the number of orders we normally do," says Paul Malley, president of the organization. "No matter what they think is right or wrong, people are saying, 'Isn't it terrible this is happening?' One woman who called said, 'Wouldn't it be wonderful if this were Terri Schiavo's legacy?'"

Aging With Dignity was founded in 1996 to promote dignified care for people at the end of their lives. Mr. Malley says the organizers quickly realized that people wanted to have their wishes known but were discouraged by what they saw as a complicated legal process.

"People don't want to talk about death and dying to start with," Mr. Malley says. "All the forms seemed too hard to understand, so some people would just rather avoid the topic altogether."

Consider the options

Many states, including Texas, provide a living will form that allows people to choose whether they want life-sustaining treatment if they are terminally ill. The Texas document, which must be signed before two witnesses, also preserves the right for people to change their minds at any point.

But Mr. Malley says some state forms do not go into enough detail, with legal language that some people find off-putting. So his organization put together the Five Wishes booklet, asking questions in plain English covering five categories:

•The person I want to make care decisions for me when I can't
•The kind of medical treatment I want or don't want
•How comfortable I want to be
•How I want people to treat me
•What I want my loved ones to know.
"We want people to fill it out together and discuss it with their family," Mr. Malley says.

Although the Five Wishes booklet is not legally binding in Texas, Ms. Paggi says she recommends it "because it makes you think about options. If you are dying, do you want music? Do you want to die alone?"

She says that many of her elderly clients who are dying don't want their children present, but never tell them.

"They might have said, 'I really want to be alone. It's not a spectator event,'" Ms. Paggi says. "A lot of adult children are guilty because they weren't in the room when their parent died. So it's another benefit of having the document."

Aging With Dignity charges $5 for the booklet, or $25 for 25 of them. Working with attorneys, health groups, senior citizen organizations and private companies, the organization has distributed 3 million booklets.

Spread the word

Mr. Malley and Ms. Paggi recommend that people make copies of their wishes, then distribute them to family members, doctors and whoever is empowered to make decisions.

"If it's legal power of attorney, you do want to keep it locked up," Ms. Paggi says. "But a medical directive? You should make copies of the copies.

"Keep one in the glove compartment of your car, give one to the person who normally takes you on errands. It's only good if someone knows it exists and has access to it when you need it."

Mr. Bailey, who isn't married and owns a construction company, has a copy of his living will at home. He has also given copies to two friends. He's told one of his four children about his wishes. But when he became ill Oct. 28 at home alone, he was too sick to grab his directive before climbing into an ambulance. He simply signed another one after being admitted to Baylor Jack and Jane Hamilton Heart and Vascular Hospital.

Staff workers "said they would like to have it on file again. I am fortunate enough that I got here, but if I were to go into cardiac arrest and lose my capacity to do what I am doing now, then I don't want that .... I don't want to be a burden to anyone I love," he says.

Put it in writing

Mr. Malley says that if the Five Wishes document is signed in front of witnesses, it has legal standing in 35 states. Ms. West says that while Five Wishes and other living wills that people do for themselves may be helpful, they may not stand up to a challenge from someone who disagrees with the instructions.

She suggests that a state-recognized living will should be part of a package that includes a will that distributes assets and a document assigning power of attorney to make decisions in case one becomes incapacitated.

In uncomplicated cases, she says, the entire process shouldn't cost more than a few hundred dollars.

"You would hope people would do this," Ms. West says. "But every week I deal with a situation where somebody didn't. Then it becomes this ethical dilemma.

"If everybody knew what I wanted, but I didn't take an hour to go and sign a document, then the hospital is nervous and the doctors are nervous about cutting off life support. And if there's a dispute in my family, then it goes to the court and it's a mess."

At Baylor, the Rev. Kara Leslie Stalcup says that hospital staffers ask every patient whether he or she wants a living will and offers help filling it out. The free form then becomes part of the patient's chart.

"We send patients home with the original," says Ms. Stalcup, a hospital chaplain. "We tell them to give copies to two people. It helps start the conversation. It is difficult for parents to have this conversation with their children. They can say, 'I know you don't want to talk about this, but I have already made my wishes known.'"

Peace of mind

Ms. Stalcup says people shouldn't wait until they're seriously ill to deal with the issue.

"We do believe that it is a spiritual decision as well as an emotional and physical one," she says. "The key is doing it when you don't really need to. Then you can make a decision out of faith and guidance instead of fear."

Mr. Malley says his organization hopes to convince the Texas Legislature to recognize the Five Wishes booklet as legally binding, as other states have. Meanwhile, he says, it can be a useful adjunct to the state-approved living will for a family's peace of mind.

"We're getting feedback from family members that this is immeasurably helpful," he says. "Not only in making decisions, but in knowing that they did the right thing."

"There are lots of families out there that had horror stories of having to make these life-and-death decisions without knowing what the person really wanted."

E-mail kthomas@dallasnews.com or mprecker@dallasnews.com