The Opinions - When We Face the End of Life, ‘It’s Not Sadness We Should Fear. It’s Regret.’

Episode Date: January 9, 2025

Sarah Wildman lost her 14-year-old daughter, Orli, to cancer in March 2023. Before she died, Orli had questions about the end of her life, but as Wildman explains in this episode, that conversation wasn’t encouraged by Orli’s doctors and caregivers. Wildman argues that health care providers need to be frank and empathetic with patients and their families about the realities of death. “Everyone deserves the opportunity to sit with these questions at the end of life,” she says. “It’s not impossible, but doing so requires us to recognize: It’s not sadness we should fear. It’s regret.”Thoughts? Email us at [e-mail]. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

This is The Opinions, a show that brings you a mix of voices from New York Times Opinion. You've heard the news. Here's what to make of it. My name is Sarah Wildman, and I'm an editor and writer for New York Times Opinion. For the last several years, I've written a number of extremely personal essays on childhood cancer. The first week of March of 2022, my whole family, my daughters, Orly and Hana, and my partner, Ian, went to Miami for a long weekend. we knew that Orly, who had been fighting liver cancer at that point for over two years, was facing another relapse.

This was her third. And that first day at the beach, she ran down to the waves and came back and we stretched out on loungers. And then she turned to me and said, what if this is the best I ever feel again? In the moment when Orly asked me on the beach, that question my immediate thought was, no, Orly, that's no. That won't be. 376 days later, just about three months after Orly turned 14, she died. In the time since she left us, I've often thought about Orly's question.

All that spring, she would ask me, why did I really believe the cancer was gone? That it wouldn't just come back again and again. And underneath that question was a bigger one. Where are we going to crush it ever, or would it eventually take her? It was a conversation she wanted to have, but it wasn't one that was encouraged, neither inside the hospital nor outside of it. There is a sort of understandable and yet almost relentless hope when facing something like childhood cancer. You both need it, and at times it works against you. Before I turn to the hardest questions that I still carry about the last year of Orley's life,

I'd like to give you a sense of who she was, how luminous, how vibrant. Hey, Orley. Hi. How you doing? I'm good. Yeah. How are you feeling today? You just saw me.

I know. Sixteen months after Orly was first diagnosed with cancer, we were in the middle of a second round of chemo with new agents. Orly was 12. And at that time, she came on the New York Times Instagram live with me. to talk about her experience. I'm old enough to articulate what's going on for me, but I'm also still young, so I'm going through my childhood still.

And I think that's really unique because I'm also trying to just live out my life like a normal kid, but also battling with cancer at the same time. What do you think you miss the most about regular life? well doing all the stuff I could do before also having a hair not really because like it's nice to have hair also because like everybody in the hall stairs at me now which is not always great I mean you happen to look really good with a bald head I'm just going to say that she really was filled with a certain kind of joyful energy even been going through something so difficult. Do you want to be an advocate for childhood cancer? Yes, always. It's definitely changed your life, all of our lives.

Even when I'm normal, I guess, and people can't see cancer and me. I'll always have that with me. I've learned a lot. I wouldn't recommend cancer to learn stuff, but I have definitely learned a lot. So Orly, thank you so much for doing this with me. I feel like you can come downstairs now and give me a hug. Okay, I think, wait, should I now? What? Say bye.

Okay, that was early helper, and thank you so much for joining us. Orly finished up chemotherapy that summer, and she got a reprieve. She went back to school, her hair grew in, She looked super cute. And then that winter she celebrated her bat mitzvah. We were never not fearful. It's impossible to be in cancer care,

but we allowed ourselves to hope that this might be stable. Her in cancer actually did remain at bay up until that point of that Miami trip, when suddenly it reappeared in a tiny spot in her lung. Then it came back again. in early summer, and this time far more ferociously in her brain. And yet, despite those setbacks, Orly would bounce back again and again. The lung surgery was hard, and yet she was back after that. And the brain surgery seemed impossible, and two weeks later, she was on a surfboard.

That summer, she read 15 books. And yes, it challenged hope. And I still had hope somehow. cancer treatment comes with a tremendous amount of discomfort. There's physical pain from the tumor itself. There's pain from some of the treatments. And that physical pain was largely addressed. But the emotional care was far more spotty.

And we never felt that there was clarity about what we were facing, let alone timeline. On the last day of September 2022, she was admitted to the hospital with terrible headaches and vomiting. This was the symptom that had precipitated both of her brain tumors. And at first, everyone thought they would get her back to school immediately, but the pain was really hard to get on top of. At that point, days had stretched into weeks in the hospital. And you realize that means weeks away,

from school, weeks away from her sister, weeks away from her dog and her space and us because we would trade off every day, Ian and I, 24 hours on, 24 hours off. And in the course of her cancer care, we had spent a tremendous amount of time in the hospital, but this one felt more difficult. And a palliative care doctor stopped by our room and sort of lightly offered there was a path towards home nursing that I might not have thought of. And that was hot. And that was hospice. What she said was that hospice for children is not the same as hospice for adults, because children are allowed to receive concurrent care. That means they can still seek curative treatments, they can enter into experimental trials, and she suggested that we look into

it, that we actually take that as a way that might get us home faster. And the word terrified me. I didn't want it to use around her at first, yet I thought, well, if it does offer this, you know, do we need that support? And I was willing to talk to the intake nurse. I was driving when a hospice intake nurse called me, and I very confidently said to her, unlike an adult, I understood that children could have concurrent curative care and receive hospice services, and actually really was about to enter into a drug trial. And the woman said, yes, that's true. are entitled to that, but you do know they told me she has six months to live, right? And I said, no, you're the first to say that.

After three years of treatments and a fourth relapse, we came to understand that there was no cure. What we would be doing now was maintenance treatments, salvage therapies, last-ditch efforts to keep cancer at bay, but never quite vanquishing it from her body. It meant she had what they now call a life-limiting illness. But to understand what that meant required an emotional support system that simply was absent. We returned to the hospital for a follow-up visit, and one of the oncologists stopped me in the hallway,

and she said, I heard you didn't finish the intake with hospice. And I told her about the conversation I'd had, the six months to live, the prognosis. And I said, is it true? did you say she has six months to live? And she said, that's an antiquated way of thinking about hospice. And what she meant by that, I think, as I thought about it, leader, was that no one knows. No one knows how long someone has to live.

And any prognosis is always a guess. But she didn't use the moment to say, you know we're no longer talking about a cure. And when we're no longer talking about a cure and we're facing the amount of metastases early has faced. You know, we are looking at a life that is truly limited. She didn't say that. And my sister, who is a nurse practitioner and oncology herself and I have processed this conversation a number of times, and she has said to me, what if she had said, Sarah, she's dying, she will die soon. Would you have been able to hear her? And I always say, I don't know. It's not the conversation we had. No one with whom I had a relationship had offered me that bluntness.

And so hearing it from this woman on the phone, who I'd never met, who was just a voice, offering me something so incredibly dire, didn't seem possible. Hope is essential for getting through the horrendous treatments, the setbacks, the last minute rushed to the ICU when something goes wrong, and that happens again and again. And hope was essential. for maintaining her spirits when she felt that she'd been withdrawn from her world for so long. I wanted to spend every second with her being with her and celebrating every moment with her.

But if I can go back, I wish we'd had a conversation in March of 2022 that was more honest with her providers that didn't necessarily take away all hope because I don't think that would have been fair to her or to us, but that said we have a new calculation now. She's facing a third metastasy, and you now have a risk-benefit analysis about whether or not you'd like to take this moment while she feels really good to travel.

And maybe we would have said no, but I long wished we had taken the chance to do more with her. when she felt good, when she asked me that sentence, what if this is the best I ever feel again? Because I think she was right. Many of these children's hospitals, should be noted,

have an emphasis on fundraising for and supporting a search for cures, not end-of-life care. And this was true at our treating hospital as well. In fact, in researching end-of-life care and bereavement, I had heard that there has been pushback in creating programs or in some way appearing to advertise that children die in these hospitals. But they do die. Cancer remains the leading cause of death by disease for children in America.

And acting as though they're not dying does not assist the families neither in facing their death nor in living on. in the aftermath. There are a number of studies on the terrible comorbidities associated with losing a child, prolonged grief, anxiety, depression, inability to work, suicidal ideation, suicide itself, heart disease, even untimely death. These outcomes can be mitigated with therapeutic intervention, with a family in the time before a child dies and then early, consistent grief work after. After early died, we experienced something I later learned as common among brief families,

a sense of abandonment by the hospital. When fighting her disease, we'd been surrounded by a war room of incredibly brilliant doctors and nurses. All of a sudden, we were alone. There was very little outreach from the hospital. no bereavement services, we felt entirely alone. One friend of Orly's recently told me that in November of 2022, so a few months before she died,

Orly had texted her saying, I'm going to die, but doesn't everyone? I just will die a little sooner than most. This is a great opportunity for me, actually. Everyone's focused on the time they have left. They forgot to live. She thought at the time she had two years left. She didn't.

But in a strange way, it was a gift to get this text from this kid because it allowed me to understand that Orly was processing it even if no one was inviting her to. After she died, I learned that Orley had worried most about what would happen to us, Hannah, Ian, and me if she were to leave. and I wasn't able to reassure her because I didn't know that's what she was worrying about. I only learned about it too late.

She and Ian talked about death much more than I did. What happens? Where do we go? Is there something more? Will we ever see each other again? Honestly, I'm quite jealous that he had those conversations and I didn't, but I'm grateful that they took place. I think Orley was trying to protect me by not processing her death too often with me.

I think she knew I was even less ready than she was, and she did not want to die. Everyone deserves the opportunity to sit with these questions at the end of life. It's not impossible. But doing so requires us to recognize. It's not sadness we should fear. It's regret. If you like this show, follow it on special.

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