A Very Private Issue Resonates With Public

She was in the middle of a business call and had mounds of work. But the minute Sue Kelman heard Terri Schiavo had died Thursday, she couldn’t wait any longer. She drafted an e-mail to her parents, her brother and her sister.

“I think I know how some, but not all of you wish to be treated at the end of life,” the executive at a Boston health organization wrote to her family. “But even if I were to hazard a guess ... it would only be that. A guess,” she said, asking them to put their wishes in writing.

The lengthy, sometimes ghoulish public deathwatch over Schiavo is touching off soul-searching, but also practical and highly personal conversations in offices, living rooms and bedrooms.

Men and women find themselves contemplating difficult philosophical issues and the deep, dark matter of trust. Some wonder: Is their spouse the person to whom they want to delegate their own end-of-life decisions? How should friends, children, siblings, parents be involved?

Others wrestle with a more fundamental question: What constitutes a life worth living?

In short, as the nation watched Schiavo die, many people gave new thought to how they and their loved ones live -- and how they hope to face death.

At record levels Thursday, living will forms were downloaded from Internet sites. Some people set out to learn the meaning of such terms as “health proxy” or “power of attorney for health decisions.”

“It has made me more militant,” Lucinda Dyer, 57, an author in Franklin, Tenn., said Thursday. Dyer, who is single, said that several years ago, she had drafted a living will, designating a close friend as her healthcare proxy, “because I know she’d pull the plug for me in an instant, which is what I would want.”

But just to make sure, Dyer said she called her lawyer earlier in the week “to make absolutely certain that everything was in place.”

And once again, Dyer had a conversation about end-of-life care with her 94-year-old mother, who has stipulated that she does not want to be kept alive if she becomes incapacitated.

Schiavo’s death, said Dyer, “has reconfirmed for me how strongly I feel about the right to die on one’s own terms.”

As a result of all the attention given to Schiavo’s lingering death, Vermont novelist Chris Bohjalian said he had a first-ever conversation with his 77-year-old father.

“I am not sure that my father and I had ever said the two words ‘living’ and ‘will’ in the same sentence prior to this,” Bohjalian said Thursday. “In that regard, I think it has been helpful.”

Bohjalian said he asked his father outright: “What are your wishes? Do you want to be resuscitated?” And he and his wife had a similar conversation with their 11-year-old daughter, sharing with her that they had drafted living wills before she was born, and “making it really, really clear what we want.”

Pointing out that “the reality is that this sort of tragedy occurs on a private level thousands of times a day,” Bohjalian added: “I hope that the public spectacle that this has become will allow all of us to become more gentle with each other as we make these really tough decisions.”

After all, he noted, “the hardest thing that any of us is going to do is die. Wouldn’t it be wonderful if, when we approach that task, everyone around us understands our feelings and what we want? Wouldn’t it be wonderful if there could be some more civilized public discourse, instead of this really unattractive grandstanding?”

As a medical ethicist for 27 years, Dr. Charles Grodin said Thursday that Schiavo’s prolonged death had helped promote a national conversation about the very issues he confronts every day.

“People are having the discussion,” he said. “Doctors are having the discussion. Religious groups are having the discussion. People on the street are having the discussion.”

Grodin, director of law, medicine and ethics at Boston University School of Medicine and Public Health, said: “This is good. The question is: Are they having the discussion based on facts?”

The political overtones of Schiavo’s situation make it difficult to ferret out many of the facts, said Kenny Moore, an energy company executive and former Catholic monk. But Moore, who lives in Brooklyn, N.Y., said the “political stuff” is what has galvanized the dialogue.

“It is not that people die, or have tubes inserted in their bodies -- we know that, and we know we may have to face those issues ourselves,” said Moore, 56.

“It’s the next step, because this has prompted many of us to ask: Does the state have a role in our death? That is what has caused us to bring this conversation to our dinner tables.”

Annette Littlefield, a 46-year-old insurance agent in Seattle, said she had been so outraged by congressional intervention in the Schiavo case that she had found a living will form on the Internet and filled it out. She wrote that she did not want to be “kept alive by any machines,” and designated her younger sister to make decisions on her behalf if she were unconscious.

“What happens to me in that situation is, I don’t want it up to the government,” Littlefield said. “I certainly trust my sister more than I’d trust Congress to make a decision like that about me.”

Kim Oliver, 33, a Seattle hotel manager, also said she was surprised that lawmakers had moved to override a spouse’s decision on healthcare. Oliver said she does not have a living will, but believed she had made her wishes very clear to her parents.

“I wouldn’t want tens of thousands of dollars spent to keep me going in a vegetative state,” said Oliver. “I’d rather my organs be used at that point to help someone who could really use them.”

Still, many who followed news of the Schiavo case said that while it had certainly prompted conversations with loved ones about what-if scenarios, it had not driven them to any action.

“A living will? I don’t even have a regular will,” laughed Joseph Sharpe, 32, a customer-service representative for a cellular phone company in the Northwest. “I guess maybe all the news about the Schiavo case bumps it up the priority chain in my mind, but it’s still not all that high on the list. I don’t know if I’ll get around to it or not.”

Josh Bockstahler, 25, who works in human resources at a Seattle department store, said the Schiavo case seemed to involve a highly unique set of circumstances: “I haven’t really thought about it in concrete terms, what it would mean for me. I’m young. It just seems like a very remote thing.”

Some said they had been moved to make it clear they wanted to fight for life -- and that they approved of Schiavo’s parents’ determination.

“I’m very religious, and I believe miracles can happen; they do every day,” said Andrew Hahler, 48, a chef’s assistant in Seattle. “So I’d always choose life. Especially with our medical system, you never know what could happen as long as you just stay alive.”

As a direct result of the focus on Schiavo, the human resources division of Clark University in Worcester, Mass., circulated a university-wide memo on Thursday about living wills, said Deborah Bieri, the school’s vice president for development.

“Everybody is talking about this,” she said. “The situation is so heartbreaking, but it has gotten people talking and thinking. In that sense, it is healthy. This has lifted a veil of denial for many people.”

Bieri said e-mails were flying among her staff on Thursday, as relatives from around the country inveighed: “Never do this to me. Never let me die like this.”

Bieri said she advised her staffers to save the e-mails.

In Boston, Kelman, who e-mailed her family Thursday, said she had wanted to talk about end-of-life issues for some time. Schiavo’s death provided the impetus, she said: “I thought, I don’t care about my job right this minute. I am going to take time to send this message off.”

To her “Dearest Family,” Kelman wrote that she hoped they would all have long, productive lives. She urged them all to consider “advanced directives,” specifying their wishes in order to prevent “anyone in our wonderful family ... [from] ... making an uninformed decision.” She stressed that their wishes would be valid only if put into writing.

Kelman signed the letter: “Your daughter, sister, friend, fishing and swimming buddy -- Sue.”

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Mehren reported from Boston; Verhovek from Seattle.