Peggy Battin, a bioethicist at the University of Utah in Salt Lake City, has long believed that the chronically ill and suffering should be able to choose to end their lives. She spent decades writing about assisted suicide, euthanasia, and death with dignity. But on November 14, 2008, her intellectual pursuits became intensely personal when a bike accident left her husband, Brooke Hopkins, paralyzed from the neck down, in pain, and totally dependent on others for his most basic needs.
In “A Life-or-Death Situation,” Robin Marantz Henig chronicles Battin’s struggle as she attempts to reconcile her academic beliefs with her desire to hold onto her husband. The story offers an intimate glimpse into the couple’s marriage as they grapple with the day-to-day difficulties Hopkins faces as a quadriplegic, and the larger question of when is a life no longer worth living. [A Life-or-Death Situation appeared in the July 21 issue of The New York Times Magazine. Choosing to Die After a Struggle With Life, the blog post Henig wrote after Hopkins died, appeared online August 21.]
Here, Henig talks to TON guest contributor Cassandra Willyard about how she put together this intimate portrait of a couple grappling with the end of life.
[Editors’ note: This interview appears thanks to the generosity of contributors to The Open Notebook, whose tax-deductible donations have allowed us to commission the work. Thank you for your support!]
How did you find this amazing story?
I was looking around for what’s going on in physician-assisted suicide these days. I was really interested in this group called Final Exit Network. They’re a little bit rogue. They actually do help people kill themselves. Somebody there mentioned a philosopher who supported some of their ideas. And I thought, “Oh, a woman philosopher. Maybe I could focus on her.”
When I did some Googling of the philosopher (Peggy Battin), I encountered an article from The Salt Lake Tribune about her husband Brooke’s accident. I didn’t even know if he was still alive, but I contacted Peggy to see if I could write about her and Brooke. I sent her an article I wrote years earlier for the New York Times Magazine on hospice care, to convince her that I would treat a story about her and Brooke seriously. I knew that it was really important for the piece to focus on their story, so I made sure Peggy was on board before I pitched it. I spent about two hours on the phone with her. She really likes being asked difficult questions, so I didn’t feel like I was wasting her time just because I didn’t have an assignment yet.
Was it a hard sell?
No. They liked it right away. What they liked was Peggy—here’s this philosopher whose beliefs are being tested.
The editor you had worked with for years took a different job soon after you landed the assignment. What impact did that have on the story?
I was orphaned. It was left to me to find a story editor. I went to Ilena Silverman and said, “Do you want to pick up this story?” And she was willing. I figured that before I went out to Salt Lake I should sit down with Ilena and talk about how she viewed the article, because it was possibly going to be a little different from how her predecessor viewed the article and how I had pitched it. My vision was to use Peggy and Brooke as a lens through which to see the broader issue of physician-assisted suicide and the death-with-dignity movement. But Ilena wanted me to just be in their faces, to get intimate with them, to ask them tough questions like “Is there morphine in the house?” Because the real story was, to Ilena, about the marriage and the decision making within the marriage, and only tangentially about those larger issues. I think she ended up being right.
Was being “in their faces” uncomfortable for you?
It turned out not to be. I liked them right away. In a way this reporting was easier than reporting that might require going out there into the world—I could just spend my time inside their house, watching and listening. I don’t tape record, I just write down everything. I had my little Macbook Air, and I was constantly typing. It was exhausting because I was paying a lot of attention. We were talking all day. I was doing a lot of asking, but they didn’t need a whole lot of pushing. It wasn’t hard to get them acting out their lives in front of me.
How did you navigate your relationship with Peggy and Brooke? You were in such intimate situations with them. How did you make sure to keep a clear line between journalist and friend?
Here’s one typical situation that came up: Peggy and Brooke were working on a memoir. They had kept a blog from the moment of the accident practically, and they were putting it together into a manuscript. Peggy said to me at one point, “Gee, we think that maybe we’re going to end up needing a coauthor. Maybe you’d be able to do that.” I said to her, “We can’t even begin to talk about that until this article is behind us.” Every now and then there were those kind of things, where she would want to get a little bit closer. I had to make it really clear that, even though we were getting along well, I still had an article to write. I was going to do it in a thoughtful and sensitive way, but I wasn’t necessarily going to be her defender and advocate.
It’s very tricky. I did get to like them a great deal. They opened up their lives to me. They were very forthcoming about all sorts of intimate details. So at some level, I didn’t want to upset them. I had that in the back of my mind. I wanted the article to be accurate, but I also was worried about whether they would think I had been unfair in my portrayal of them.
How did you achieve the balance between being a “fly on the wall” of the couple’s interactions and being an “instigator” who prodded some conversations along? How did you decide when to shut up and when to pipe up?
I sat there and was present for their regular days and just observed what was going on in their household with my laptop on my lap. If they were just having an interaction because that was part of the course of their day, I didn’t put myself in the middle of that. So the fly on the wall part was when they were not really interacting directly with me.
I tried to set up formal-ish interviews with them as well. I would say, “Can we set up a time for me to sit down with Peggy alone, with Brooke alone, or with both of you together?” As far as inserting myself when they were talking to each other during those interviews, there were times when I had to turn to Brooke and ask him directly to answer the question if Peggy was taking over. That happened sometimes because she’s a very take-charge kind of person. Also, it was just harder for him to speak. It took some patience and some waiting for him to get around to saying what was on his mind. He was also not doing so well the week I was there, so sometimes he couldn’t even find the words. She wanted to fix things for him. But at those times when I really wanted to hear from him, I did have to insert myself into the conversation a little more.
There’s a tense moment in the article where Brooke says he doesn’t like people speaking for him, including Peggy. It’s a topic that they revisit later in the story. Did you push them to discuss it further?
She wanted to raise it again. It hurt her. The next day she said, “Ok. Brooke and I have decided we’re going to talk about this again because it’s very important for Robin to understand why I don’t want to speak for someone else.” And then she went on in a monologue about why she doesn’t want to speak for Brooke. I did pretty aggressively interrupt then. At a certain level, I did kind of come to feel protective of Brooke over the course of the week that I was there, in terms of just making sure that I responded to what he was telling me he wanted, not what Peggy was telling me he wanted.
Did you worry about pushing them too hard?
I worried about pushing Brooke. I kept saying to him, “Are you getting tired? Do you want to stop?” He kept saying, “No, I like this.” Both of them really loved talking about things.
You witnessed some very private moments. Did you worry about sharing details that Peggy and Brooke would find embarrassing?
At one point Peggy said to me, “I think you should really come early one morning and see bowel care, because that’s how he starts every day. They talk about death with dignity, and it’s the most undignified thing you could see.” So I asked Brooke if I could do that, and he said yes. The bowel care was very undignified, and I described it all in the first draft I sent Ilena. But that pretty quickly came out—they didn’t think it was interesting. Ilena also kept taking out the fact that he wears a diaper when I described how Brooke was dressed every day. I kept putting the diaper back in because I thought it was relevant. I didn’t worry about that being the thing that would bother them, not just the diaper but even the details of the bowel care. I think they were so beyond worrying about what he might look like.
The story went through multiple rounds of revisions, some of them pretty significant. Did you feel like it was becoming less and less what you wanted?
I was really worried about that. Anything that wasn’t a scene sort of disappeared. All my think-y bits came out. It was taking away the intellectual meat of it and turning it into this exchange in this one family. I thought maybe that wouldn’t be as interesting. But so many of the comments that came in afterwards were, “This is the best article you’ve ever written.” So maybe Ilena was right to let the reader bring whatever he had to it, and not have me beat anybody over the head with information. It was very focused and kind of lean.
Were you anxious about how Peggy and Brooke would react to the article?
I was very nervous about that. I knew that I was probably telling some parts of the story that they might not have wanted revealed, but I was hoping that if I told it in a generous way, that they would see that. In a way I thought Peggy didn’t come off looking very good. There were times when she over interpreted what else might have been going on with Brooke, other than what was really going on.
The article went online on the Times website on Wednesday, and I was getting tons of nice comments and amazingly nice tweets. But I heard nothing from Peggy and Brooke, which worried me a little. Then, at the end of the day she wrote me an email. It was this rave email about how much they loved it. I know that you’re not supposed to care, but it is such an intimate story. Anyway, I always care. I always want my sources to think I did it right.
Brooke died a week after your story came out. How did you find out?
I have a Google alert, and there was an article about it in The Salt Lake Tribune. All it said was that he died surrounded by friends and family, which suggested to me that it was not totally unexpected. But then I also figured “surrounded by friends and family” could be two neighbors and Peggy and all the caregivers—it didn’t have to have been a planned thing.
The timing was so weird. I wanted to write it up in the Magazine’s blog, but I didn’t want to write anything without having a chance to talk to Peggy about what happened. But I also didn’t want to be this vulture who asks about the details of somebody’s death. That just seemed way too intrusive. I wrote a quick condolence email to her, and then about a week or so later I wrote an actual note and mailed it. I put in the note that I wanted to write a blog post. I wanted to make it clear to her that I was very fond of him and sorry about his death, but also that I was still a reporter. It’s a tough line.
Did you hear back?
She sent me this long email, and said thank you so much for your note. Then I spent a long time on the phone with her. She was very gracious about it. She said, “It’s never a bother to talk to you.”
Peggy also asked that she be allowed to see the blog post beforehand. She was worried that if it looked too much like they had killed him the loonies would come out.
Your editor gave you permission?
I didn’t tell her. I didn’t even ask. I figured things are a little bit different for blog posts. Anyway, Peggy didn’t change anything. I was writing it a little bit more carefully, and she was speaking about it more carefully. She didn’t give me the names of any of the people involved. She did tell me which caregivers were there, but I didn’t mention their names. She was probably right to worry about it a little.
You’ve written about death before. What keeps bringing you back?
It’s dominates everything about our perception of our place on earth and what we’re doing here, and raises all these complex questions that we all answer differently. Another part of it is that I’ve always been really afraid of dying, so it is a way of both grappling with it and distancing myself from it—intellectualizing something that really frightens me.
A glimpse behind the scenes:
Guest contributor Cassandra Willyard is a freelance science writer based in Brooklyn, New York. She blogs for The Last Word on Nothing, and her writing has appeared in the Los Angeles Times, Nature, Scientific American, and New Scientist. She covers all sorts of medical stories, but her favorite ones often involve infectious diseases. Follow her on Twitter @cwillyard.