Planning for Dying Wishes

March 21, 2005 — -- We plan for weddings, birthdays, vacations, retirement. But few of us plan for the one event that awaits all of us -- death. And our failure to plan for what level of medical care we'd like to receive at the end of our lives can leave family members and loved ones burdened with emotionally excruciating decisions that should be our own.

The case of Terri Schiavo points to just how difficult these decisions can be for family members. In 1990, the Florida woman suffered severe brain damage that left her in a persistent vegetative state. Physicians removed her feeding tube on Friday after a seven-year battle between her husband, who said she would not have wanted to remain alive in such a state, and her parents, who insisted there was still hope for their daughter.

Before the action was taken, religious leaders, courts, Congress, President Bush, even Pope John Paul II and Mel Gibson had weighed in on the case. While physicians and health-care advocates say the Schiavo case is extraordinary, they say there's an important message for the rest of us: plan now.

"The main message here, for everyone, is end-of-life decisions are rightfully ours to make and it's up to us to make sure our decisions are documented and discussed ahead of time to make our wishes a reality," said Paul Malley, president of Aging With Dignity, a nonprofit organization that provides resources to help individuals prepare documents such as a living will or a health-care proxy designation, outlining their wishes for end-of-life medical care.

Like Schiavo, most Americans lack such documents. Fifty-seven percent say they don't have a living will or health-care proxy, according to an ABC News/ Washington Post poll released earlier this month. Senior citizens are far more likely to have living wills -- 70 percent -- according to the poll. But families are often finding that living wills fall short when they face health-care decisions for incapacitated loved ones.

That was the case for Maurita Jasper, whose mother died Dec. 26, 2004, in an Appleton, Wis., hospital nine days after suffering a major stroke.

"We had to clarify her wishes and make unbearably painful decisions while we were in a terrible state of grief and pain ourselves," Jasper said. "What we found is that not every member of our family had the same ideas of what various decisions actually meant."

As her mother's condition worsened, doctors told Jasper's family they should begin to consider the possible removal of her mother's feeding tube.

There were moments along the way, Jasper said, in which she and her father and siblings felt hopeful that her mother would regain consciousness and recover. These glimpses of hope made contemplating withdrawing life-support unthinkable, she said. Jasper's mother passed away before they were forced to make the decision, but merely contemplating it was heartbreaking for the family. "The guilt associated with taking a feeding tube away would have been numbing for us," she said.

Jasper is still struggling with the recent loss of her mother, but in retrospect, she feels her family did the best to fulfill what would have been her mother's wishes. "Even if you know what that person wants, it doesn't make it easy. It just makes it less difficult. The grief is just crushing," she said.

With an estimated 15,000 to 25,000 adult patients in persistent vegetative states in U.S. hospitals, according to a 1990 study cited in the Journal of the American Medical Association, a significant number of families are confronting these sorts of emotionally wrenching decisions every day. Health-care advocates urge all adults to try to spell out their wishes beforehand to reduce the burden on their families and physicians.

Some of the main options for documenting your wishes for end-of-life care are:

Noting that Schiavo suffered debilitating brain damage at age 26, Linda Whitten, a law professor at Valparaiso University, says it's important for young adults to consider these issues. Whitten says living wills can be helpful, but says appointing a health-care proxy is preferable. "If you could do just one thing, I'd say appoint a surrogate through a power of attorney or medical proxy, who -- knowing your values -- would make a decision you would have made yourself, if you were able."

Malley agrees. Because of the myriad medical scenarios possible, most living wills don't touch on the specific types of decisions families confront when a loved one faces death.

What's as important as the legal documents, Malley said, are the conversations we need to have with our loved ones. "Dying is more than just a medical moment," he said. "We need to give loved ones as much information as we can about the quality of life that we could accept at the end of our lives."