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

Summary

Podcast Summary: "When We Face the End of Life, ‘It’s Not Sadness We Should Fear. It’s Regret.’"

Podcast Information:

• Title: The Opinions
• Host/Author: The New York Times Opinion
• Description: One voice, one opinion, in 10 minutes or less.
• Episode: When We Face the End of Life, ‘It’s Not Sadness We Should Fear. It’s Regret.’
• Release Date: January 9, 2025

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Introduction

In this poignant episode of The Opinions, Sarah Wildman, an editor and writer for The New York Times Opinion, shares her deeply personal journey navigating the end-of-life experience with her daughter, Orly, who battled childhood cancer. Through her narrative, Wildman explores the complexities of hope, regret, and the often-overlooked emotional support systems in pediatric cancer care.

Orly’s Battle with Cancer

Sarah Wildman begins by recounting the harrowing journey of her daughter Orly, who fought liver cancer for over two years before her untimely passing. She describes a significant moment on a beach in Miami during the first week of March 2020, where Orly poignantly asked, “What if this is the best I ever feel again?” (00:45). This question encapsulates the underlying fear of inevitable relapse that haunted their family.

Notable Quote:

“What if this is the best I ever feel again.” – Orly Halpern ([00:45])

Orly’s Personality and Resilience

Wildman paints a vivid picture of Orly’s vibrant and joyful spirit despite her illness. She shares snippets of Orly’s life, including an Instagram Live session where Orly articulates her struggle to balance normal childhood experiences with the constant battle against cancer.

Notable Quote:

“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.” – Orly Halpern ([03:24])

Orly’s resilience is further exemplified when, after undergoing brain surgery, she was back on a surfboard merely two weeks later, showcasing her indomitable spirit.

The Struggle with Hope and Honest Conversations

Wildman delves into the delicate balance between maintaining hope and confronting the grim realities of Orly’s condition. She reflects on the pervasive and often unspoken hope within medical settings, which, while essential for enduring treatment, sometimes hinders honest conversations about prognosis and end-of-life care.

Notable Quote:

“Hope was essential for maintaining her spirits when she felt that she'd been withdrawn from her world for so long.” – Sarah Wildman ([12:30])

Institutional Shortcomings in Pediatric End-of-Life Care

A significant portion of Wildman’s narrative critiques the lack of robust emotional support systems in children’s hospitals. She highlights how fundraising and the pursuit of cures often overshadow the need for comprehensive end-of-life care and bereavement services.

Notable Quote:

“Acting as though they're not dying does not assist the families, neither in facing their death nor in living on in the aftermath.” – Sarah Wildman ([14:20])

Wildman shares her experience with the hospice intake process, where she encountered an antiquated perception of hospice care that failed to provide the clarity and support her family desperately needed.

Emotional Aftermath and the Fear of Regret

In the aftermath of Orly’s passing, Wildman discusses the profound sense of abandonment felt by bereaved families due to the minimal outreach and support from hospitals. She emphasizes the importance of early and consistent grief work to mitigate the severe comorbidities associated with losing a child, such as prolonged grief, anxiety, depression, and even suicidal ideation.

Notable Quote:

“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.” – Sarah Wildman ([16:45])

Wildman expresses regret over not having more honest conversations with Orly and her medical providers earlier on, wishing they had addressed the possibility of death more openly to better prepare both Orly and their family.

Conclusion: Embracing Honest Conversations to Avoid Regret

Sarah Wildman concludes her narrative by underscoring the critical need for honesty in conversations surrounding end-of-life care. She advocates for creating environments within medical institutions that facilitate open discussions about prognosis and the realities of life-limiting illnesses. By doing so, families can better navigate their emotions, cherish their remaining moments without the burden of unspoken fears, and ultimately avoid the deep-seated regret that arises from missed opportunities to connect and support each other during life’s most challenging moments.

Final Thought:

“It's not sadness we should fear, it's regret.” – Sarah Wildman ([17:00])

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Key Takeaways

• Importance of Honest Communication: Open and honest conversations about prognosis can help families prepare emotionally and make the most of the time they have left with their loved ones.

• Need for Comprehensive Support Systems: Hospitals and medical institutions should provide robust emotional and bereavement support to families dealing with life-limiting illnesses.

• Balancing Hope and Reality: While hope is essential for enduring treatment, it should not overshadow the necessity of addressing the possibility of relapse and end-of-life realities.

• Avoiding Regret Through Action: Engaging in candid discussions and making deliberate choices about how to spend remaining time can prevent long-term regret and foster meaningful connections.

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This episode serves as a heartfelt reminder of the profound emotional journeys families undertake when facing the end of life, highlighting the critical need for compassionate communication and support within the healthcare system.

Transcript

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[New York Times Opinion Host]

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.

[Sarah Wildman]

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 2020, my whole family, my daughters, Orlie and Hannah, and my partner Ian, went to Miami for a long weekend. We knew that Orlie, 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 Orlie asked me on the beach that question, my immediate thought was, no, Orlie, that's. No, that won't be. 376 days later, just about three months after Orlie 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 Were 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's 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 Orly's life, I'd like to give you a sense of who she was, how luminous, how vibrant.

[Ian Halpern]

Hey, Orly.

[Orly Halpern]

Hi.

[Ian Halpern]

How you doing?

[Orly Halpern]

I'm good.

[Ian Halpern]

Yeah. How are you feeling today?

[Orly Halpern]

You just saw me.

[Ian Halpern]

I know.

[Sarah Wildman]

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.

[Orly Halpern]

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.

[Ian Halpern]

What do you think you miss the most about regular life?

[Orly Halpern]

Well, doing all the stuff I could do before. Also having hair. Not only because, like, it's nice to have hair, also because, like, everybody in the hall stares at me now, which is not always great.

[Ian Halpern]

I mean, you happen to look really good with a bald head.

[Sarah Wildman]

I'm just gonna say that she really was filled with a certain kind of joyful energy, even going through something so difficult.

[Ian Halpern]

Do you want to be an advocate for childhood cancer?

[Orly Halpern]

Yes, always.

[Ian Halpern]

It's definitely changed your life. All of our lives.

[Orly Halpern]

Definitely. Even when I'm normal, I guess, and people can't see cancer in 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.

[Ian Halpern]

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.

[Orly Halpern]

I think.

[Ian Halpern]

Wait, should I now what? Say bye, Orly. Okay. That was Orly Halpern. Thank you so much for joining us.

[Sarah Wildman]

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 yet 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 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 used 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 in adults, 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, Children 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 into 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 later, 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 metastasis Orly 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 in 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. The last minute rush 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 metastasis, 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, it 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 that are 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 Hurley died, we experienced something I later learned is common among bereaved families, A sense of abandonment by the hospital, where in 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 Orlie's recently told me that in November of 2022. So a few months before she died, Orlie 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 Orly 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. 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 Orly 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.

[New York Times Opinion Host]

If you like this show, follow it on Spotify, Apple, or wherever you get your podcasts. This show is produced by Derek Arthur, Sophia Alvarez, Boyd, Vishaka Durba, Phoebe Lett, Christina Samulewski, and Gillian Weinberger. It's edited by Kari Pitkin, Alison Bruzek, and Annie Rose Strasser. Engineering, mixing and original music by Isaac Jones, sonia Herrero, Pat McCusker, Carol Saburo and Afim Shapiro. Additional music by Amin Sohota. The Fact Check team is Kate Sinclair, Mary, Marge Locker, and Michelle Harris. Audience strategy by Shannon Busta, Christina Samulewski, and Adrian Rivera. The executive producer of Times Opinion Audio is Annie Rose Dresser.