Making it personal: Chronicling the end of life Date: 02/02/17
By Lane DeGregory
In the beginning, he said he wanted to die. Ted Andrews told everyone: His wife, his doctors, a counselor from a local right-to-die group.
The 81-year-old artist had ALS, was losing weight and hope, and in terrible pain. Instead of waiting for the disease to cause him to become incapacitated, Ted said he wanted to control the end. When he became a burden, he vowed, he would take his own life.
I had spent six months following hospice patients and workers for another story. Nurses and doctors kept telling me that most frustrating part of trying to help dying people was that they really weren’t allowed to help them die. All they could do was try to make them comfortable until nature took its course.
So I wanted to explore the issue of physician-aid-in-dying, which was legal in a few states and had just been passed in Canada and California. I wondered: What options do people in other states have?
If you are terminally ill, in excruciating pain, and want a doctor to help you die, in most states you have few options. You can shoot yourself, poison yourself, pull on a hood and inhale helium. But if anyone helps you, even drives you to the store to buy supplies, that person can be held as an accessory to murder. So even if your spouse or daughter or doctor agrees you should be able to decide when to let go, they can’t help you.
I contacted a local chapter of a national group called Compassion & Choices, which has offices throughout the country, and asked to follow a terminally ill person who wanted to control his or her own death. The counselor, a physician, introduced us to Ted – and throughout our reporting she became a wonderful character and source of reason and guidance. She had helped her own husband travel to Switzerland to end his life. And she explained every option and legal form to Ted and his wife, Carolyn. So with the doctor’s help, we were able to walk readers through their own end-of-life options and planning, as told through her tutelage of Ted.
Ted and Carolyn were welcoming and warm from the start. Ted took over, ushering a photographer and me into his screened-porch artist’s studio. Carolyn greeted us, made iced tea, then retreated inside their trailer for the rest of the afternoon. As we prepared to leave, we made sure to engage her and explain to her and Ted what we hoped to photograph and write about, how we wanted to sort of “imbed” in their lives, for a few hours or even a day at a time, and be there as his disease worsened and he had to face the unthinkable decision. He swore he was going to stop eating and drinking and die peacefully, without gun powder or poison or doing anything to implicate his wife.
He said he understood that we wanted to watch him through his day-to-day activities, and to be there for dramatic as well as quiet moments. He invited us to come whenever we wanted to, to witness whatever we needed to. He wanted a doctor to give him a pill or shot and just be done. He thought it was unfair that he had to go to such extreme measures on his own. And he wanted people to know they should fight to change the law.
But as the months went on, he continued to control the situation, relegating us to the porch or living room for our interviews, deflecting our questions, pulling back to the past to explain the grand life he had led, refusing to stay in the present or talk about the future. We had to learn to be patient, listen to the same stories five or six times, let him have his say, lay his legacy – then gently steer him back to what we needed to ask.
After a few visits, the photographer and I started splitting up, one of us staying with Ted, the other going inside to talk to his wife. That’s when we began to get much better insight – and access. His wife invited us to stay for dinner, so we went with her and picked up their favorite: chicken pot pies. Then spent two hours watching Ted try to gag down a few bites.
We stayed for another two hours of HGTV, making small talk, not photographing or even taking notes. Just hanging out, doing what they do every night, watching them interact. Instead of interviewing, we shared stories about our families and dogs and talked about jazz. That evening, we seemed to connect as people, not just journalists and subjects, and we felt we had really cemented their trust.
“The next time we come,” we asked, “can we spend the night?”
We wanted to see them go to bed, or writhe all night in pain, and wake up in the morning – so we could book-end their routine. They didn’t want us to sleep over, but agreed to allow us to stay until they turned off the lights – and to call before they got out of bed. So we got a room in a Holiday Inn a half-mile away and were with Ted and Carolyn until 12:30 a.m. – then back with them when Ted woke for a smoke at 4:30 a.m. We got some of the best, most intimate moments of our nine months of reporting that night. We barely talked. But by being able to witness them trying to navigate their difficult daily routine, we were able to gain so much insight into their relationship and this final trip together.
Maintaining objectivity was difficult during the reporting because, as Ted suffered more pain and became more dependent, he started railing on his wife and really being cruel. At first, we tried to ignore these outbursts. But as his temper escalated, we had to ask his wife about it and she was grateful we noticed, but embarrassed she had to endure such insult. It was hard to figure out whether to interrupt him and defend her. And how much of that conflict to record – and include in the story. But it all seemed part of that frustrating process of totally losing control over your own body – and destiny.
Writers in any state could share a similar story. Members of physician-aid-in-dying groups are willing to help find people with terminal illnesses who want to share their journeys. Just make sure you explain, early on, what you need, why you want to tell this story, what’s in it for the person you’re following. And prepare your editor: Sometimes stories shift, and surprise you, turning into something very different from the one you set out to tell.
In the end, Ted didn’t really want to die. He just wanted to make his life matter.
Lane DeGregory is a Tampa Bay Times feature writer who prefers writing about people in the shadows. For 10 years, she wrote news and feature stories for the Virginian-Pilot. In 2000, DeGregory moved to Florida to write for the Times. DeGregory's stories have appeared in the Best Newspaper Writing editions of 2000, 2004, 2006 and 2008. She has taught journalism at the University of South Florida - St. Petersburg and at the Poynter Institute for Media Studies, been a speaker at the Nieman Narrative Conference at Harvard University and has won dozens of national awards, including the 2009 Pulitzer Prize for feature writing.