When someone is diagnosed with a terminal illness, life takes on new meaning, and the ultimate question of how to die becomes imminent. In 2007, Don Colburn, then a health reporter at The Oregonian, shared the intimate story of one woman's journey with terminal cancer, and whether or not to use Oregon's doctor-assisted suicide law. Today Colburn reflects on his own journey with Lovelle Svart, a woman determined to live to the end. Don Colburn is a long-time health reporter and poet.
Wy'east U-U Congregation
June 20, 2010
THE EXTRAORDINARY ORDINARY (or THE ORDINARY EXTRAORDINARY?)
A few years ago - on the evening of Sept. 28, 2007, to be exact - I watched a woman die. Her name was Lovelle.
She was 62. She had inoperable lung cancer and had been ill with cancer for about five years. She died at home. About a dozen family members and friends gathered at her bedside, knowing she was about to die. A hospice nurse was there.
Doesn't that sound, at least if you weren't in the room, unremarkable?
It was, and it wasn't. Which is why my working title this morning is "The Extraordinary Ordinary."
Lovelle chose to end her life by swallowing an overdose of barbiturates prescribed by her doctor at her request under Oregon's Death With Dignity Act. She was one of 49 Oregonians who died this way in 2007.
Lovelle agreed to let me and photographer Rob Finch document the last months of her life. This was Lovelle's journey, of course, but it was also a journey for Rob and me, and I want to share some of my own discoveries from that experience. We reporters try to be flies on the wall, but it's not that simple.
At the time we undertook the Lovelle project, The Oregonian had published nearly 1,000 stories mentioning the Death With Dignity Act. But none had followed a patient through the decisonmaking process and witnessed someone carrying out the life-ending act - in real time.
This is what we tried to do. To show, as it was happening, how use of the law comes down to an intimate, personal and possibly troubling set of decisions for one person and her family. Rob and I would record what we saw and heard, and let readers and viewers come to their own conclusions.
We called our series Living to the End.
We wanted this to be Lovelle's story, told in her words and her voice, unfiltered. We wanted, as much as possible, to get The Oregonian out of the way. To do that, of course, we had to spend an inordinate amount of time and effort getting IN the way.
We wound up publishing 27 video "diaries" of Lovelle speaking directly to the public, plus four print stories, including a Sunday front-page feature chronicling her final day. We also published online a five-minute audio of the last moments of her conscious life, when she swallowed the drug overdose and fell into a coma. That audio plays against the background of a still photograph of Lovelle lying in bed as she lifts the glass to her lips.
Some background. As you probably know, Oregon was then the only state where it is legal for a doctor to prescribe, on request from a terminally ill patient of sound mind, a drug overdose intended to end the patient's life. The patient must make the request in writing and orally, twice, at least 15 days apart. Two doctors must certify that the patient has a life expectancy of less than six months. The patient must swallow the drug, without help; it cannot be administered by a doctor or anyone else.
Oregon voters approved the DeathWith Dignity Act twice. It took effect in late 1997.
Both proponents and opponents were surprised by how few Oregonians actually use the law. Fifteen in the first year, a high of 59 last year. A total of 460 in 12 years, accounting for just over one of 1,000 deaths in the state. Virtually all of those died at home, under hospice care. Most were over age 65, and had cancer. Almost all were white, insured and well educated.
Most of the attention on the Death With Dignity Act has focused on the politics, from the ballot measure campaigns in the 1990s to the Bush administration's failed effort to overturn the law. Usually, there's an implicit assumption of two sides fiercely opposed. You are for it or "agin" it. You regard it as right or wrong, humane or uncivilized. If you are terminally ill, you either choose it or you don't.
But it's not that simple.
Opponents do see it as a violation of the Hippocratic Oath to "First, do no harm," and a betrayal of the doctor-patient relationship. Advocates do see it has a perfectly humane way to let people take control of their dying and free themselves from fear of pain and loss of dignity. One group calls it physician-assisted suicide; the other, aid in dying.
For the record, I'm skeptical of both of these labels and the claims behind them. I'm not afraid to say I don't know. I wasn't entirely comfortable in that room on the night of Sept. 28, 2007, standing amid the small talk, the nervous laughter, the tears and the trappings of Lovelle's act of dying. Nor would I have been, if she had died in a hospital room or an ICU.
There's a lovely passage early in Walt Whitman's masterpiece "Song of Myself," inspired by a child's question, "What is the grass?" Whitman ponders the grass in various forms, including "the beautiful uncut hair of graves." Then comes this line, which always has amazed me:
"And to die is different from what anyone supposed, and luckier."
I thought of that line often while we were witnessing the final months of Lovelle's life.
In the very first video diary by Lovelle, she introduces herself as someone who has just been told by her doctors that she probably has less than six months left. Remember, she had been ill with cancer - and heart disease - for nearly five years. And here's what she says:
"I've been fighting this for so long and fighting my body for so long that it almost became � [sigh] � OK, maybe I can stop fighting everything and just enjoy what there is for the rest of my life."
Our stories on Lovelle turned out to be not so much about her dying, as about her living to the end, and figuring out, in the words of Mary Oliver's poem, "when the time comes to let it go."
One video diary dealt with Lovelle's complex relationship with her mother. Another focused on her 43-year smoking habit. In others, she talked about her life regrets, her wish to dance the polka on her dying day, her difficulty balancing the need for visitors with the need for time and space by herself, and how a dying person, not just her bereaved survivors, experiences grief. I'll never forget Lovelle's advice: "The way to talk to someone who's dying [she paused] is just to do it."
Lovelle understood our wish to tell what happened and not give in to sentimentality, not to glorify or sweeten. (She told us she got sick of people calling her "brave.").
In some ways, this story wasn't very newsy. We all knew - sort of -- from Day One what the result would be. Lovelle would die. The only suspense was about whether Lovelle would actually do what she said from the beginning she might do.
But "to die is different from what anyone supposed, and luckier."
"We're in uncharted territory," we kept telling ourselves. That was both warning and reassurance. It was daunting not to know how this would play out or whether we could be there to witness the end. But we reminded ourselves that this uncertainty was exactly why we were doing it. Who wants to write - or read - predictable stories?
It's not just the unknowns that vex you, as Donald Rumsfeld famously said about the war in Iraq, it's the unknown unknowns. The "unk-unks," as they have been called. You have to be ready for them, even if by definition you can't.
Isn't that true of dying?
This was no fairy tale. The story had to acknowledge its own complication and how the end of life, like the rest, is often more gray than black-and-white. Why should this come as a surprise?
I'll mention just three of many complications.
1. We knew there was one outcome that was unacceptable. We could not publish if we felt in any way that doing so would force or cajole or "tilt" Lovelle into a decision that was not fully hers. This was our version of the physicist's dilemma known as the Heisenberg Uncertainty Principle. To put it bluntly: How much did our presence "change the room"? Did we alter the story just by being there? We asked ourselves this a lot.
2. Lovelle lived in an assisted-living center, and her 90-year-old mom lived down the hall. Lovelle chose to die in her mother's apartment, not her own - for the simple reason that her mom's apartment was bigger. Unlike Lovelle's, it had a separate bedroom. Lovelle, an obsessive detail-person, wanted to make sure those at her bedside could step out into another room if they wished. But that meant Lovelle had to ask her 90-year-old mom for permission to die in her bed. Her mom would have to watch her daughter die in the mom's bed - and by a means that she saw as morally wrong. She had voted against the Oregon Death With Dignity Act. Here was an unconditional maternal love. Lovelle, whose relationship with her mom often had been strained, was transcendently grateful for her mother's willingness to put aside her own religious opposition to the Oregon law and be there for her daughter on the day she ended her life.
3. Once Lovelle decided that she wanted to end her life by taking the overdose that she kept hidden on a shelf in her closet, a crucial question remained. When? This is a much more tangled question than I had realized. If she waited too long, she would lose the ability to swallow - and disqualify herself from taking the drug. If she acted prematurely, she would, well, miss out on part of her life.
All those complications became part of the story. Readers, I'm convinced, welcome this approach. They feel included by it. They understand. Their lives, too, have swerved or gotten messy.
On that final day of her life, Lovelle called AAA in the morning to come fix a dead battery in her car. She helped set out a buffet of salad, fruit and cold cuts. She spent some time alone with her mom, and with her friends. She danced the polka in the living room. Late in the afternoon, she briefly delayed her ingestion of the lethal overdose in order to walk down to the parking lot for one last cigarette. The extraordinary ordinary, indeed.
And, yes, this story was different because someone we got to know pretty well was going to die. "You guys are so somber today," Lovelle said on one of our last video visits, eight days before she died. Rob and I each took a shot at telling her why, stepping around the obvious, but not ignoring it, either. A coworker, a friend, a fellow traveler, a collaborator on this story, was dying. I remember that Lovelle thanked us for saying what we said, because, she said, it wasn't falsely "objective."
"No tears in the writer, no tears in the reader," the poet Robert Frost said. "No surprise for the writer, no surprise for the reader."
The day before Lovelle died, our supposed agreement to be with her, filming, to the end - which we had gone over and over - nearly blew up. It wasn't that Lovelle had changed her own mind, but that she was feeling increasing pressure from her mother and her siblings and did not want to upset them further. Why should we have been surprised? I didn't want to argue with Lovelle - she had, after all, only 24 hours before she planned to die - so I left the question of access unresolved. The final decision, Lovelle said, would be up to her mom.
On the last afternoon, Rob and I arrived 10 minutes early at Lovelle's assisted-living center and sat in the car. We went over what we thought would happen, for the umpteenth time, and our priorities. Try to fade into the background during the first 5 minutes, say as little as possible. Try for a final video with Lovelle. Find some way of asking her mom the big question: Can we take a picture of Lovelle after she drinks the stuff? We needed to bring closure. And it's Lovelle's wish, too, after all.
And then we asked ourselves, out loud, the biggest question of all: Under what circumstances would we just walk out? Our editors had given us permission, even encouraged us, to think like this. We each came up with some scenarios, and I was relieved to hear them sound far-fetched. What if Lovelle's mother ordered us out of the bedroom where Lovelle was about to die? What if opponents of Oregon's law somehow got wind of her intention and picketed in the parking lot or made a scene? What if one of Lovelle's brothers freaked out at what he called "the media vultures" and turned violent? What if he knocked over the tripod or just started screaming? Lovelle's sister had warned me that this family was "a weird bunch," and there was no telling what any of them might say at any time. "We're not easy people," Lovelle herself said on a video.
Most importantly, what if Lovelle somehow, some way - contradicting everything we had seen and heard from her so far - gave us a signal that she was undecided after all, yet felt "locked in" because of our presence and what she might have signaled to readers and viewers? Not going to happen, we realized. But still, we had to acknowledge that if either of us felt that way - that creepy - we both would leave.
Hours later, I would duck out to the laundry room across the hall from the room where Lovelle lay dying and call my editor by cell phone. "I think they're starting to feel like we're not the most important thing in the room, which is exactly right," I said.
What a relief that was.