TBO.com - TBO is Tampa Bay Online

Experts Say Most Americans Lack End-Of-Life Care Orders

ADVERTISEMENT

The Associated Press

Published: June 8, 2008

SEMINOLE - When death nears, Liz and Jim Kirkman will be ready.

In their wallets and on their refrigerator door, the Kirkman's last wishes are meticulously documented. Now on their third or fourth revision, living wills share space with family photos and their driver's licenses.

More than three years after the struggle over Terri Schiavo's life played out at a nearby hospice, in courtrooms and in Congress, planning for death and medical care in case of a catastrophic injury still seems to be an afterthought.

As volunteers for The Hospice of the Florida Suncoast, the Kirkmans say they see many people who haven't planned ahead.

The couple said that though there seems to be a greater willingness to plan for end-of-life care, the majority of people they see don't have any advance directives, even when they are under hospice care.

"It's amazing," said Liz Kirkman, 72.

Only an estimated one in five people have a living will or other form of advance directive, said Paul Malley, president of the Tallahassee-based nonprofit Aging with Dignity. A recent survey for ELDR Magazine put the figure at about one in four.

That's despite the highly publicized fight over Schiavo, who was severely brain damaged when her heart stopped for several minutes in 1990 and had no written end-of-life instructions. Her husband in 2005 succeeded in having her feeding tube removed over her parents' wishes. She died 13 days later.

"There's a natural reluctance to think in detail about your own death," said Thomas Finucane, who chairs the Ethics Committee at Johns Hopkins Bayview Medical Center in Baltimore.

Finucane, who is also the co-director of the Elder House Call program at Johns Hopkins, said planning for catastrophic illnesses is difficult, but necessary. Generally, designating a spouse or other loved one to make tough health care decisions if you're incapacitated is the best option.
Living wills are more problematic because they cannot accurately predict all the complications of a severe injury or illness.

The Kirkmans have designated their daughters to make key health care decisions if they are ever incapacitated. They plan to discuss their wishes again in detail during an upcoming family visit, and recently revised their documents to inform caregivers not to perform cardiopulmonary resuscitation.

That level of involvement is necessary, but not typical, of people who have spelled out their last wishes.

Malley's group distributes a five-part directive called "Five Wishes," which allows people to designate someone to make decisions if they're incapacitated and also spells out their medical, emotional and spiritual wishes.
Aging with Dignity has sent out more than 11 million copies of "Five Wishes" nationwide since 1998, Malley said.

The planners help "move the conversation from the attorney's office and the emergency room to family living rooms," he said. It follows laws applicable in 40 states.

He said conversation about one's wishes is the key thing missing from a lot of advance care planning. "It's not just about signing the document," he said.

Another frequent mistake is to lock up an advance directive, which renders it useless since it is often inaccessible when needed.

Malley suggests keeping a wallet card and leaving a copy in a prominent place at home.

The Kirkmans, who favor planners distributed by Clearwater-based Project GRACE, do both.

Malley said a copy should also be given to physicians.

Finucane, who has helped craft a study that included in-depth interviews with 20 terminally ill elderly patients about their end-of-life planning, said it's just human nature to resist death, or even discussions about it.

"I don't see an easy fix to that," he said. "Nobody can really reconcile themselves to death."

Share this:

Loading Comments...

Email Print

ADVERTISEMENT