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Fran Schindler volunteers to sit by the deathbed of those who ask

CORRECTION: Due to a reporting error, the original version of this story misrepresented Final Exit Network's role. A person making an exit does not have to pay anything to Final Exit Network, or is not charged anything for Final Exit Network's services, and contributions to Final Exit Network are used to pay the Exit Guides's expenses. Final Exit Network also does not provide any materials to any person.

The story has been updated to reflect these changes.


Fran Schindler lives alone in a yellow townhouse in a quiet Chapel Hill neighborhood. 

The walls of the 75-year-old’s living room are covered with her own art — three-dimensional mixed media pieces made from driftwood and twisted metal, abstract paintings with splashes of color that might be faces or animals or anything else depending how you look at them.

She likes alcohol ink because she can’t control it.

“It does what it does,” she said. “You never know what you’re going to find in there. It’s just fun.”

But outside of art, Schindler wants control — she wants a life she can live independently, and when that’s no longer possible, she wants to be able to die on her own terms

.

When someone’s life becomes unlivable whether due to chronic pain or chronic dependency, Schindler believes, they should have the right to end their life. She shares that belief with the more than 3,000 members of the Final Exit Network, a national nonprofit organization that provides services and education for people who want to end their lives.

Schindler volunteers as an exit guide for the group, and she has traveled across the country and said she has watched 35 people die.

‘What am I going to do if this happens?’

Before her work with the Final Exit Network, Schindler was no stranger to death and suffering. In her years as a psychiatric nurse, she saw people struggling with mental disorders and substance abuse, and she watched her mother regress to an infantile state as dementia degenerated her brain.

Then Schindler faced horrors of her own through the past few decades — a brain tumor, breast cancer and the symptoms of Lou Gehrig’s disease. Divorced since the late '80s and with no desire to go to a nursing home one day, the possibility of losing her independence terrified Schindler.

“I thought, 'What am I going to do if this happens?'” she said.

The tumor and cancer were treated, and the symptoms went away, but the possibilities and the desire to maintain control stayed at the back of Schindler’s mind. Whether it was her mind or body that stopped working, Schindler decided she wanted to die on her own terms and began looking for a way to do it when the time came. In 2006, she found the Final Exit Network.

Founded in 2003, the Final Exit Network’s core belief is simple: Mentally competent adults who have decided that their own quality of life is unacceptable, whether due to a fatal illness, chronic condition or intractable pain, should have the right to end their lives.

The Final Exit Network’s work exists outside the law’s framework. Assisting a suicide is illegal in many states, but that’s not what the group does, Schindler said, though some members have been indicted for that. Most states, including North Carolina, don't have a clear definition of what it means to assist a suicide.

When working with the group, the person who wants to end their life must be physically and mentally able to carry it out themselves. There’s an application process, which requires people to become Final Exit Network members and submit medical records and a letter of intent.

“You really have to understand this clearly: We do not aid, abet, assist, solicit or encourage anyone to end their life ever,” Schindler said. “We’re not calling anybody.”

A person making an exit does not have to pay anything to Final Exit Network, or is not charged anything for Final Exit Network's services. Contributions to Final Exit Network are used to pay the Exit Guides's expenses, such as airline flights and rental cars.

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A bedside presence

"I can’t tell him. I can’t tell him," the woman kept saying to Schindler.

Schindler, now a senior exit guide, had taken a case in New York. But in order to be there for the old woman, Schindler needed her to talk to her estranged son. 

In every case the Final Exit Network handles, she said, there has to be a "discovery plan" — a family member needs to be informed when someone plans to end their life with the group and needs to take care of their body afterward. This woman hadn’t talked to her son in years.

“Amazingly he said yes, he would come,” Schindler said. “And he was the most anxious and frightened man I have ever seen outside of a hospital when we got there to talk to him.”

Schindler remembers watching him sit on the floor, rocking back and forth.

“I thought he would just spin himself off the face of the earth,” she said. She had no idea how he would handle the end of his mother’s life in a few days.

But when the day came, he knelt down beside his mother’s bed, gave her a kiss and held her hand while she died.

“It still gives me goose pimples to think about it because I can still see them,” Schindler said.

The only true gift for someone dying, she said, is just being there.

“The only thing I really bring to them is the gift of a nonjudgmental presence,” she said. “I believe that nobody comes into this world alone, and nobody should ever have to leave it alone, unless they choose to do so.”

The deaths Schindler has seen have been peaceful, she said.

“There has been so much that has gone on before we get there — talking initially with the person, visiting them, visiting their family, talking with their family, knowing that this is really, absolutely what this person wants,” she said. “There’s a sense of peace for all of us because they are getting their wish … They just carry this out, and they go to sleep.”

A complicated decision

That doesn’t mean Schindler’s work goes without criticism. The disability rights group Not Dead Yet has spoken out against the Final Exit Network, arguing that offering aid in dying is a form of discrimination against the disabled.

“You really can’t go saying that only some lives are valuable,” Not Dead Yet research analyst Stephen Drake said. “A human life is something to be protected because all lives have worth.”

Drake, who is disabled himself, said he knows that total control over one’s life isn’t possible. There’s more the Final Exit Network should be doing for its applicants, he said, such as offering alternative treatment or other kinds of help, rather than going straight to suicide.

“Everybody who wants to commit suicide has what they believe is a good reason for wanting to do it,” Drake said.

The International Association for Suicide Prevention doesn’t have an official policy on either physician-assisted suicide or FEN’s work, the organization’s United States representative Dan Reidenberg said. It’s a complicated issue, he said, and a concerning one.

“It’s very important that anyone facing a decision like this be seen and evaluated by a psychiatrist with expertise in suicide,” Reidenberg said.

For her own decision, Schindler owns two hoods herself, so when her time comes, she's ready. Her children have known this for years, and her oldest daughter has promised to sit with her.

Many members, Schindler said, have friends and family members at their side. Some call it a living wake, and some just call it a party, Schindler said, and that’s what she wants, as well.

“I would like to have something like that for my friends before I left. I’d like to hear everybody say, ‘Oh God, we really love you, Fran,’” she said. “‘We’re gonna miss you when you’re gone.’”

@rachel_herzog

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