The Ending Needs Work: Humanists Can Lead on End-of-Life Decisions
Jennifer Ouellette describes herself as a “recovering” English major who stumbled into science writing by accident and has been “exploring her inner geek ever since.” Ouellette often uses pop culture, fantasy, and science fiction as tools to communicate scientific ideas to mainstream audiences. “I abandoned the assigned problems in standard calculus textbooks and followed my curiosity,” she writes in her 2010 book The Calculus Diaries: How Math Can Help You Lose Weight, Win in Vegas, and Survive a Zombie Apocalypse. “Wherever I happened to be—a Vegas casino, Disneyland, surfing in Hawaii, or sweating on the elliptical…I asked myself, where is the calculus in this experience?”
From 1995 to 2004 she served as a contributing editor to Industrial Physicist magazine and later served as the science editor at Gizmodo. She is a current contributor to Ars Technica and has been featured in the New York Times, Smithsonian magazine, the Wall Street Journal, Nature, Physics Today, and numerous other outlets. Ouellette also has a long-running blog called Cocktail Party Physics (“Serving up science and culture with a splash of wit”). In addition to The Calculus Diaries, her books include Black Bodies and Quantum Cats: Tales from the Annals of Physics (2005), The Physics of the Buffyverse (2006), and Me, Myself and Why: Searching for the Science of Self (2014).
In 2008 Ouellette founded the Science & Entertainment Exchange, a Los Angeles-based initiative of the National Academy of Sciences aimed at fostering creative collaborations between scientists and entertainment-industry professionals. From 2012-2015 she was a member of CoSTEP—the Committee on Science and Technology Engagement with the Public—organized by the American Association for the Advancement of Science, and from 2013-2016 she served on the American Physical Society’s Committee on Informing the Public.
The following has been adapted from Ouellette’s speech in acceptance of the 2018 Humanist of the Year Award, delivered on May 18 at the AHA’s annual conference in Las Vegas, Nevada.
THANK YOU SO MUCH. This is a tremendous honor and I am sincerely humbled by it. I hope my evangelical Christian parents are not utterly horrified by it.
Yes, I was raised evangelical, and growing up, “secular humanist” was pretty much synonymous with Satan. No truly good person could possibly be a humanist because all good comes from God. Or so I was taught. I don’t need to tell anyone here that morality is not the exclusive domain of belief in a god. Anyone can live a good, fulfilling life, even without religion. Here I want to speak to you from the heart about something else: how to have a good death at the end of that good, fulfilling life. I’m not trying to bum you out. Truly! But humanists are committed to facing the facts. The fact that each and every one of us will eventually die is the most brutal fact of all. So it behooves us to talk openly and honestly about it. We don’t do that enough.
It’s something I’ve been thinking about a lot over the last three years, ever since I lost my beloved brother, David, to cancer on New Year’s Day 2015. I can’t say it was a good death; at least it was a fast death, which was a mercy, given the degree of pain he was in. It didn’t have to be that way. Watching his suffering compelled me to give serious consideration to how his death—indeed, any death—could be made just a little bit better. Sometimes it takes a bad death to show us what needs to change.
First, I would say to doctors and other medical personnel: please be honest about a patient’s prognosis and don’t hide behind euphemisms and platitudes. When I interviewed a cancer researcher a year or so after David died, he summed up the outlook thusly: “Stages 1, 2, 3: patient can live. Stage 4: patient will die.” His bluntness was refreshing. Even online resources are more coy about the brutal reality than they should be. But most medical personnel are reluctant to be so forthright with their patients, even when they know the news is very bad. It doesn’t help patients prepare for the inevitable to be anything less than 100 percent clear.
David would have made very different choices about his care if he’d been told frankly that Stage 4 stomach/esophageal cancer was incurable, and all the chemo and radiation would at best buy him a bit more time. In the end I was the one to tell him the brutal truth—that the outlook was much worse than he had been led to believe, that he should assume this would be his last Christmas, and choose his options accordingly. And then we sat in silence for a bit while he absorbed the news. He looked up pictures on the internet of the Laura Ingalls Wilder house in Mansfield, Missouri, where he had wanted to take his fiancée for their honeymoon, dropping a single, solitary tear as he realized he would never be able to give that to her. It was one of the hardest things I have ever done. But I owed him honesty, and he thanked me for it, hard though it was for him to hear.
Second, we need much more research and resources directed toward pain management. I was shocked at how little doctors and nurses know about pain and how best to manage it—and just how difficult managing it can be. Watching my brother suffer completely reset my scale for assessing pain: his cancer had spread to the bone—one of the most painful kinds of cancer—and he experienced a constant throbbing ache punctuated with regular bouts of excruciating spasms that lasted several minutes and left him blanched in the face, gasping, and near shock. (He would keep saying, “Oh my goodness… oh my goodness…” because he tried not to swear.) Being even a few minutes late with the next dose was disastrous as it would then take several hours of carefully managed doses to get ahead of the pain again. When I talked to a pain researcher at the Mayo Clinic months later and described my brother’s case, she got very quiet and just said, “I am so sorry. We really don’t know how to manage that kind of pain.” People who are facing death shouldn’t suffer needless pain on top of it.
Third, right-to-die legislation needs to be implemented in every state, and in those states where it is legal, the process has got to be streamlined. I realize it’s controversial. But this experience convinced me that we all should have the right to choose when and how we shuffle off this mortal coil. Ultimately David decided to forego any further treatment because he didn’t want to prolong the inevitable, and his own suffering. By that time he was in near-constant, excruciating pain (only partially controlled by meds), unable to move much or even lie down to sleep because of a massive tumor eating away at his sternum (he slept sitting up in a lounge chair). Three-quarters of his stomach was tumor, so he couldn’t eat, and the nutritional IV he was on caused massive bloating and swelling, especially in his legs and feet.
“Humanists are committed to facing the facts. That each and every one of us will eventually die is the most brutal fact of all. So it behooves us to talk openly and honestly about it. We don’t do that enough.”
Washington State (where he lived) had only just approved right-to-die legislation. David was very interested in this option, but his regular doctor was opposed on moral grounds, so he would have had to find a new primary caregiver. In the end, he just went off his IV meals completely and literally starved himself to death. THIS SHOULD NOT BE THE FALLBACK OPTION. It’s inhumane and indecent. He suffered needlessly for an extra two weeks when he could have died peacefully at home with his fiancée.
Finally, to families and loved ones: deal with your denial already. I know it’s painful and scary to face losing someone you love; now imagine how difficult it is for them. You’re not doing your loved one any favors by not acknowledging the reality of the situation. David was really scared about his impending death—who wouldn’t be? But my evangelical Christian parents refused to admit that he was going to die. They had decided that Jesus was going to miraculously heal him, and any admission of the actual reality was akin to not having faith in their god’s power and greatness. This hurt David very deeply because he couldn’t talk to them about his feelings and what was happening to him.
Humanists might appear to have a huge disadvantage when it comes to death and dying. We don’t have a rosy afterlife to point to, a reward in heaven to make up for all the suffering here on earth. Death is so very final. David’s loss was hard for me because I knew that everything he was—his thoughts, feelings, memories, personal quirks, his loyal, loving nature—would die along with his physical body. But there is strength in facing that truth unflinchingly. Ironically, the humanists in the family dealt with David’s death far better than the devoutly religious members, precisely because we were willing to face the facts and grapple openly with a great personal loss.
I thank you for the Humanist of the Year Award, from the bottom of my heart. As a science writer, my job is to not flinch and to tell the truth, and I think that’s also the mark of a good humanist. So let’s start having these difficult conversations; that’s how things will start to change.
This all-too-short life is all we have; it’s the performance, not a dress rehearsal. So what we say and do, how we choose to live our lives, matters tremendously. And as for losing the ones we love—there is one place they can live on: in our memories, and in our hearts. Perhaps that’s small comfort compared to an eternal afterlife. But it’s reality, and that’s good enough for me.
Q&A
The following are excerpts from the Q&A following Ouellette’s speech.
Question: You suggested that there’s something scary and difficult about the idea of not existing. But, you know, I missed World War I. I missed the Roman Empire. I missed all of it. I didn’t exist back then, and so I can report that not existing is a big nothing.
Jennifer Ouellette: I think that trivializes the reality of a personal impending death. Certainly it’s useful to realize that you could simply never exist. I was adopted. If I had been aborted—this was always thrown in my face—I would never have been born. And someone would say, well, how do you feel about that? I would feel nothing about that because I wouldn’t know.
But actually facing your own death is a very, very different thing. I think it’s important to acknowledge the nonbeing, to acknowledge and embrace the fear. That’s how you work through it to acceptance.
Q: Your perspective on death with dignity is refreshing. I know many Catholics view it as the ultimate sin, and different religions have different beliefs on the issue. What do you think is a good starting point to talk to people who are compassionate but view their compassion as wanting to prolong someone’s life as opposed to relieving them from pain if that’s what the patient so chooses?
JO: First and foremost, I think it should always be a choice. There are people who will want to prolong their life, and I have no problem with that if that’s what they want. What you shouldn’t do is get in the way of people who don’t want to continue suffering, and I think that’s what we do now. One of David’s childhood friends is a devout Catholic and was extremely upset when David mentioned that he’d been looking into a compassionate death option. This was the same friend who suggested David go off his food and starve himself to death. How is that different? I don’t see how he made that distinction.
Q: When we’re talking about end-of-life issues, there’s loss of capacity as well. What can people do to prepare for when they’re not dead, but they’re just not really there anymore?
JO: That’s a very difficult, tragic thing. Atul Gawande’s Being Mortal is a must-read for considering these questions: How do we take care of elderly parents who may have Alzheimer’s? Who may have dementia?
Gawande makes a very strong case that we just do death so badly in America. I also suggest looking into the Order of the Good Death. It’s a group in Southern California, and perhaps nationally as well, that’s devoted to discussing these kinds of issues and trying to help people figure out what their best death would be like and how they might ensure getting it.
Q: Do you feel there’s any parallel between ending or deciding to end an adult’s life versus ending or deciding to end the life of an embryo?
JO: No.
Q: Organizations like the Death with Dignity National Center and Compassion & Choices are engaged in a political battle, primarily against people who are very religious. What do you think about the fact that even when a death with dignity law is passed, it’s full of so many restrictions that it’s rarely used?
JO: One of the things I’m working on in terms of a next book is looking at phase transitions and criticality, which involve some physics concepts, and applying those to how we change minds.
I’m sure you’re familiar with the backfire effect. This is when someone says something that’s just dead wrong, and you very politely correct them and give them the facts, and they double down on their original claim. They’ll tell you you’re an arrogant scientist and that they know in their gut or their heart that it’s true. And that’s because it’s a core belief and it’s tied to identity. When you attack that core belief, you’re attacking them in their minds whether they know it or not, and it’s very difficult to overcome that.
Brendan Nyhan [a professor of public policy at Michigan State Univeristy] did a study on this effect in people who hold anti-vaccine views and found that nothing worked to counter that stance. You could try storytelling. You could try appealing to emotion. You could try straight facts. Nothing would budge people from their anti-vax stance. However, this study only covered the short-term. Long-term is a little bit different because people can and do change their minds. But it’s a long haul.
To change minds, you have to first win hearts, and then you’ve got to be patient and let those seeds germinate. It can be very discouraging to feel like progress isn’t being made. We take a tiny baby step forward with compassionate death and even the legislation that gets approved is so hamstrung that it’s hard—as I discovered with my brother—to get that to kick in. But you start by just plugging away, and I think science does play a role in this. Over time, if the seed gets planted enough and resistant minds hear counter ideas from those they love and trust in particular, it will overcome cognitive dissonance barriers and the backfire effect will be undone. But it’s a journey, and you won’t always see the change as it’s happening. Because in a phase transition, change is happening all the time. We think that the change happens, say, when water turns into ice or into vapor, but actually it’s happening all along.
Q: Thank you so much for your talk and for this topic. Someone I knew died recently and had prepared far ahead laying out his beliefs and wishes. So when the time got closer, he already had a doctor that accepted them. He was able to move into a hospice and he died rather quickly because of that. Do you have any recommendations for taking that kind of control?
JO: This is why we need to start talking about these things more openly and honestly. Yours is an ideal story and I wish everybody’s death was like that, but of course the reality is it’s usually not the case. My brother was a young man, really healthy as a horse until he had a backache, went to the doctor, and learned he was just riddled with cancer. He was a construction worker who went bankrupt and retrained as a truck driver. He had no money. He was on Medicare. He was kind of stuck with the doctor that he got assigned in his network.
These are all the realities of the American healthcare system. It’s complicated because human beings are complicated and the infrastructure is complicated. And people don’t like to make these plans, but that’s my plea—for talking about this and thinking about it even if you’re a young person, even if you think your death is far away. If we want the end of our lives to be as fast and pain-free as possible, let’s start by talking about that.