Before You Get Sick, Have the Talk

ABC News
Before You Get Sick, Have the Talk
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Before You Get Sick, Have the Talk (ABC News)

When James Inman died from complications of Parkinson's disease, his family knew just what to do. The World War II veteran had picked out his coffin and the plaque for his gravesite, and had determined that the U.S. flag would be draped, not folded, over his casket.

Those weren't the only gifts the Massachusetts man gave his family; he had also made his medical wishes very clear.

"He completely unburdened us and took all of that off of our plate," said son-in law-Jim Desrosiers. "It was one of the most unselfish things I ever experienced."

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As Inman lost consciousness during what would be the last two weeks of his life, his family could tell the doctors that he did not want to have his life artificially prolonged.

"That decision, while he was unconscious, was guilt-free," said Desrosiers. "We knew we were just executing his wishes."

All too often, families have the opposite experience. Their loved one may have failed to designate a health care "agent," someone to direct their care if they can't. Or perhaps they never bothered to execute a living will, or talk to family members about their wishes.

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Nathan Kottkamp has seen these stressful situations up close. An attorney who specializes in health care, he sits on the ethics boards of four Virginia hospitals. When there's no one designated to make health care decisions, or when families are arguing over what to do for their ill relative, the cases often end up before these ethics boards.

He remembers one instance of a single mom with two young children who was put on a ventilator after suffering complications during surgery. There was no one to make decisions for her, and no indication of what she wanted. Two court cases later, the hospital was finally able to provide appropriate care for her, and a guardian was named for her children.

"It was not just traumatic to the individual involved," he said, "but to everyone in the health care team."

These painful experiences are "so preventable," says Kottkamp, which is why he has launched National Healthcare Decisions Day. Designated as April 16 (right after income tax day because as Kottkamp says, the only things certain in life are death and taxes), it's a day to nudge families to think about "who will stand in your shoes when you can't speak for yourself," said Kottkamp. "I think the single most important thing to do is name somebody. You can name someone the health care team can interact with. You should tell them what is important to you."

Kottkamp started this grassroots effort eight years ago, after the Terri Schiavo case riveted the nation. Schiavo spent 15 years in what doctors said was a persistent vegetative state, while her husband and parents fought a legal battle over whether to prolong her life. Ultimately a court sided with her husband, who wanted to remove Schiavo's feeding tube. She died 13 days later.

National Health Care Decision Day has grown into a nationwide effort supported by hospital, hospice and medical associations.

"We all know that 100 percent of us are going to die, but starting the conversation is often hard," said Ellen Goodman, a Pulitzer Prize-winning columnist and founder of The Conversation Project. The project is designed to help families start a conversation around their wishes if they are ill or incapacitated.

The organization grew out of Goodman's experience when her mother became ill and passed away.

"I was faced with a series of cascading decisions for which I felt unprepared and blindsided," said Goodman, whose mother had never laid out her desires. "I sure wish I could have heard her voice in my ear as I was going through this process."

Polls consistently show that most people say it's important to put their end-of-life issues in writing, but most have not done so. "It's [always] too soon," said Goodman, "until it's too late."

Mo Jennings and her family participated in an end-of-life conversation that aired on World News with Diane Sawyer. She wanted to have that talk with her family and elderly father, after her mother died from cancer last year. Jennings' mother did have a living will, which covered some circumstances, but she had never had the broader conversation about her medical wishes with her children. That meant agonizing choices on whether to stop IV fluids and let her mother slip away.

"I know we made the right decisions," said Jennings. Yet as she later said in a talk to hospital administrators: "How I wish now that my mom could have talked to all of us … to reassure all of us that it was O.K. for her to go."

Kottkamp hopes families will use April 16 as an excuse to select a health care surrogate and begin these heart-to-heart conversations.

"It's really not just end-of-life stuff," he said, "The reality is people can get into a car accident or have a heart attack at any age."

Then, if the worst happens, there will be someone standing by to do what's best.

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