By Chris Haring

Steven Petrow, whose sister Julie recently chose assisted dying in New Jersey after a long battle with cancer, talks about their relationship and her decision.

When Julie Petrow-Cohen died on June 30, 2023, nobody was surprised. Although at only 61 years old, her lifespan was by modern standards far below the median, Julie had been fighting stage IV ovarian cancer since her diagnosis in 2017. Eventually, she knew, despite doctors’ best efforts, the effectiveness of treatments would wane, and the disease would eventually kill her.

Initial doubts about physician-assisted death turn to support

By the final year of her life, it was apparent that Julie decided that prolonged, agonizing suffering was not something she was willing to endure. Meanwhile, her brother, Steven, admits that at first, he was unsure about his sister’s decision to pursue physician-assisted death. By showing his support, he said, he felt like he was endorsing her death: “I’m pro-Julie making this choice, [but] it felt like I was also saying… I’m pro-Julie dying.”

In a recent episode of the Tradeoffs podcast with Dan Gorenstein, Petrow explained how he witnessed his sister’s focus shift from prolonging her life and maintaining its quality to considering end-of-life options. As a result, he came to be “not an advocate,” he says, but someone willing to “speak openly and authentically” about the complexities that come with terminal illnesses and the concepts of dignity and autonomy at the end of life.

Access and awareness are patients’ most burdensome barriers to aid in dying

After discussing Julie and her specific circumstances, Petrow sheds light on the practical realities of accessing medical aid in dying, emphasizing the disparities in awareness and resources that often hinder individuals from exercising their legal right to choose.

Much of the opposition to right-to-die laws comes from a lack of education about and understanding, he says: people “don’t really understand what [assisted dying] is. Therefore, when things are not familiar, they’re threatening in some way.” And for those with barriers related to “access, economic circumstances, [and] cultural issues around death and dying,” Petrow says there’s “a differential… that results in unnecessary suffering and pain.”

He further notes that even though concerns about people being “pushed into” assisted death continue to be raised by opposition groups, the lack of evidence – and the still-relative rarity of the practice (only 186 people have used aid in dying in New Jersey since its legalization in 2019, for example) – prove otherwise.

Ultimately, Petrow believes his sister’s story will prove less uncommon as awareness grows, with so many Americans broadly supporting the concept of choice. Still, he says, “most of us don’t know someone who has exercised medical aid in dying. But so many of us have seen loved ones suffer.”

Read the full interview transcript below below or listen to the podcast here:

‘She Didn’t Want to Die. But She Didn’t Want to Suffer.’

By: Dan Gorenstein
Published: February 22, 2024

A handful of states allow terminally ill people to take life-ending medications prescribed by a doctor instead of waiting for death. We talk with journalist Steven Petrow about his sister’s choice to use this option.

Note: This transcript has been created with a combination of machine ears and human eyes. There may be small differences between this document and the audio version, which is one of many reasons we encourage you to listen to the episode! 

Dan Gorenstein (DG): For all of modern medicine’s advances, there comes a time when treatments have failed and death is inevitable. Staring down a diagnosis of cancer or ALS can make a person feel helpless in the face of a painful and prolonged end to their life. But a handful of states have created laws to try to give people a choice. Medical aid in dying, or MAID laws, allow terminally ill people to take life-ending medication instead of waiting.

Steven Petrow (SP): That option, knowing you have that choice, that agency of your own life, that agency about your own life, is crucial.

DG: Today, journalist Steven Petrow shares what he’s learned about medical aid in dying as a reporter — and a brother who watched his sister choose this option. From the studio at the Leonard Davis Institute at the University of Pennsylvania, I’m Dan Gorenstein. This is Tradeoffs.

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SP: I’m Steven Petrow. I live in Hillsborough, North Carolina. I’m a contributing columnist for the Washington Post and a nonfiction book author. And among my various titles and monikers, I’m also Julie Petrow-Cohen’s brother.

DG: Steven wrote two columns about his sister Julie for the New York Times: One in 2022 about preparing for his sister Julie’s death from ovarian cancer, and one last year about her decision to use New Jersey’s law — what’s called medical aid in dying — to end her life last summer.

DG: In one word, how would you describe Julie?

SP: Troublemaker. That is the word she used to describe herself. We have a brother.I am the oldest, two years between Jay and me, and then five years between Julie and me.Julie was the troublemaker. I’m known as the instigator and my beloved brother, who’s the middle child is the mediator. And when I think about her, what I most remember is her big smile and her big chiclet teeth. 

DG: Are you saying your sister was buck toothed?

SP: No, she was not buck toothed. She just had sort of big teeth and a big smile. So they kind of radiated a lot of happiness and a lot of white.

DG: You called Julie your co-conspirator in life. You talked on the phone regularly.

Voicemail from Julie: Hi Steven, I just felt like calling to say, “Good morning.” Happy Friday! 

DG: You wrote in the New York Times about how when you were in college, the two of you would sneak out together to go to your respective queer bars and cover for each other with your parents. It’s clear, Steven, from reading your essays, just how close the two of you were. Is there a story that you’ve been thinking about since she passed that really captures your relationship?

SP: I have to say, I have this sort of continuous loop going on in my head these days.What I think about often is we were in Rhode Island after she was diagnosed. The whole family is enjoying themselves in kayaks — Julie and I are racing everywhere, trying to beat each other. And there’s a photograph of us sort of getting to the imaginary finish line in our heads, each of us raising our paddles and claiming victory. And then I remember the night before she died. She had been in a lot of pain, and they had tried more and more fentanyl, morphine to alleviate that. It was not working, and she had already made the decision that she would exercise medical aid in dying the following day, and the whole family was there. And we lay in bed together. I was holding her from behind. And I was very much aware that was going to be the last time I would be holding her like that, that I would be able to for sure know that she heard me say I love her. I asked her if we had any unfinished business, and she said no. And she also thanked me for being, not her number one fan, but being her number one researcher and an instigator, because whenever there was a problem getting something at the hospital or getting approval, I have pretty good resources and a lot of resilience, and I put it all to work for her.

DG: The headline of your article in the Times was, “I Promised My Sister I Would Write About How She Chose to Die.” Steven, why was that so important to her do you think?

SP: She wanted more people to have that choice. Currently there are 10 states that have legal medical aid in dying, plus the District of Columbia. She felt she was lucky, by circumstance and happenstance, to live in New Jersey, which is one of them. She felt she was lucky to have certain privileges. They had the income to pay the $900 that it cost to buy the end of life medications, which are often generally not covered by either public or private insurance plans. She was a lawyer. She had been involved in social justice issues her whole life. She was involved with the fight for marriage equality in new Jersey and nationally. These matters of of parity and access mattered so much to Julie.

DG: In your reporting, Steven, what have you learned about who actually is using these laws, getting medical assistance to speed up death?

SP: It’s generally white people. I think it’s 92% of the individuals who die from medical aid in dying are white. It’s highly skewed towards college educated, highly skewed towards individuals who have been diagnosed with cancer, and then there’s an economic skew as well. That has a lot to do with both access, economic circumstances, cultural issues around death and dying. That feels like there’s a differential there that results in unnecessary suffering and pain.

DG: Julie was diagnosed with stage 4 ovarian cancer in 2017. You said she’d gone through “a nine hour surgery, six rounds of chemo, three recurrences and two clinical trials” before making the decision to pursue medical aid in dying. Steven, can you walk us through the first time your sister told you that she wanted to die?

SP: Dan, she didn’t want to die. But she didn’t want to suffer. There really wasn’t a moment when this this broke open. It was evolving. So I knew that she and her wife, Maddie, I think it was in the second year after she was diagnosed, they took an online death and dying course to start to feel more comfortable talking amongst themselves, between themselves and then with us. And so I talked with Julie when we would get a CT scans back and a treatment would fail: What were her prospects? What were the next steps. So it just continued to be a conversation.

DG: You said she didn’t want to die, but she didn’t want to suffer. I’m guessing that thought, that feeling, that wish really became her North Star. And I’m wondering, Steven, when she first shared that with you, how did that land for you?

SP: I had to undergo a bit of a journey when it came to medical aid and dying and the idea that Julie might do that, exercise that choice. There was part of me that didn’t want her to do that. The idea that in the same way you could plan a vacation or you can plan a caesarean, you can plan your death. That was very novel. That was upsetting, and I just couldn’t even imagine how one prepares for that. I couldn’t imagine how she prepared for that. 

DG: So when your sister says to you, I want to plan my death the way one would plan, as you said, a vacation or a cesarean, you found that novel concept upsetting. Fine. No judgment. But why?

SP: It was an entirely new concept. The first time I was in their living room and they had a hospice social worker over, and they were talking about MAID or the MAID, I didn’t know what they were talking about. I knew they didn’t have a maid. And it’s true for so many people, I’ve come to realize after talking and writing about Julie that we don’t really understand what it is. Therefore, when things are not familiar, they’re threatening in some way. So that was that was a big part of it. And then the other was this sort of intertwined notion that to say I’m pro MAID, I’m pro Julie making this choice, it felt like I was also saying, well, I’m pro Julie dying. And I had to tease them apart. I had to get some help and teasing them apart. And Julie helped me do that. And talking to others did as well.

DG: So what was it that finally got you to a place where you were comfortable enough to embrace what Julie wanted, no matter how uncomfortable it may have been for you?

SP: I really kind of moved along as I saw her suffer. Unfortunately, it didn’t take long because to see someone truly suffering like that. And she was the kind of person who could withstand a lot of pain. She was not a complainer. And she didn’t even complain about this, but I would just hear her upstairs in her bedroom really kind of crying out when she moved. And then very, very close to the end, her shirt just happened to sort of ride up a little bit and I hadn’t seen her abdomen in a while. And that’s where many of the tumors were. And I wrote in that Times piece it looked like the lunar landscape, because you could see them pushing out and you could see these rounds and mounds. It’s like, oh my God, you know. No wonder there’s so much pain.

Initially I wasn’t going to talk about whatever conflicts I had about medical aid in dying. But I kind of came around or evolved because I see so much in our culture when we talk about an issue that it’s black and white. And I’m not black or white on this. I’m not an advocate. I’m not carrying a sign. I’m Julie’s brother, and I’m complicated and confused and have tried to speak openly and authentically about that in talking about medical aid in dying. 

DG: I gotta think part of why you were willing to push yourself as much as you pushed yourself is because for the simple reason that you loved her. And you trusted her. And you wanted to do right by her. 

SP: It’s very true. Yes. And I still love her and I still trust her, and I still want to do right by her. She still talks to me and she still badgers me. She still says she’s going to beat me at hearts the next time. When it comes to medical aid in dying, it’s been 30 years now and under 9,000 individuals have exercised that choice. That’s in the entire United States. And so we don’t know people who make this choice. And so I think part of what I’m thinking and what I’m doing is, well, I want you to know my sister. I want you to know everything about her. And I want you to know you know how and why she made this decision and how it felt to her to have that level of agency. So that drives me. So I, you know, in a way, I hope that people who listen to our interview will say afterwards, OK I know somebody. I know, Julie Petrow-Cohen who died from MAID.

MIDROLL

DG: Welcome back. We’re talking with Steven Petrow, a journalist and author who has written recently about medical aid in dying, where terminally ill patients can take life-ending medications to die on their own terms. Steven’s sister Julie Petrow-Cohen used medical aid in dying after six years grappling with ovarian cancer.

DG: So most states, including New Jersey, where Julie lived, require a person to be mentally capable and have two doctors confirmed they’re within 6 months of death. A person then has to make multiple requests oral and written, with a several day waiting period in between. How easy was it for Julie to navigate that process?

SP: I wrote in the Times piece, the time is often not am asset that dying people have. Fortunately for Julie, she moved things ahead early enough that none of these were encumbrances to her, but for some people it certainly is. I actually think one of the biggest issues is public awareness about medical aid in dying. It’s so low. I mean, when I first wrote that Times piece, I heard from a medical ethicist who was now going to start teaching in his classes about this because it had never come up as an issue in medical ethics. And I heard from an oncologist in Washington, D.C., where it is legal that he was unaware of it. And what happens too often is that when it does pass in a state, there are not PSAs all over the place saying, come to the booth and get your medical aid in dying medication. It’s kept on the QT And I think that hinders educational campaigns for sure.

DG: So, according to surveys, roughly roughly 70% of Americans support these laws, these medical aid in dying laws and have for a while now. But there’s also, as you know, strong opposition. Much of it comes from religious groups. The pope has spoken out against this. There are disability rights advocates suing to overturn California’s aid in dying law. They worry that people with disabilities could be pressured into this to avoid being a burden. What do you make of these concerns, Steven?

SP: Of course we have to listen to all these groups. Nobody should be pushed to make this kind of decision. And so how do you balance those two aspects? When you look at the numbers — 186 individuals in New Jersey, that’s since 2019, less than 9,000 nationwide — it does not seem that people are being pushed. But it’s a conversation that needs to take place as part of this larger conversation because we need to make sure that we protect everybody. 

DG: You talked a couple minutes ago about this lack of public awareness, which certainly seems right. At the same time, it seems like at least looking at things legislatively, there might be some sort of shift because you’ve got major medical groups, including the American Medical Association, that have softened their opposition to this in recent years. You’ve got 18 states right now that have legislation pending that would legalize medical aid in dying. Why do you think we’re seeing more openness to this now, Steven? What’s changing?

SP: I said earlier that most of us don’t know someone who has exercised medical aid in dying. But so many of us have seen loved ones suffer. And I think that is helping to push attitudes along. I think also that when you look at polling, Americans generally are in favor of choice. And this is sort of one of those issues about choice. You know, my body, my self, my self-determination.

DG: In preparation for this conversation, we asked you to send us some recordings of Julie to help us get to know her better. Thank you for doing that. That was very kind of you. There’s one that really stood out to me.

Voicemail from Julie: Hey, Steven, it’s Julie, calling you back. Maddy and I are at the beach. It’s beautiful. Very calm. The water is glistening with the sun. Right at the front. Very happy. I’ll talk to you soon. Goodbye.

DG: What do you hear when you listen to Julie’s voicemail?

SP: Well there is a very big smile on my face despite a lot of the sadness we’ve just been talking about. I hear her zest for life. She was with the person she loved the most in the world, her wife Maddy. She was at the place she loved the most in the world, which is the beach and the water. That’s where we grew up. She’s at the front of the beach, you know, that was always very important to her. I hear all of her aspects. She’s not in the back row, she’s in the front row. She’s out there and she’s in the moment. She’s in the moment. Living and loving and that’s why I’m smiling. That’s her gift to those who knew her.

DG: You explained very well why Julie wanted you to write about her end of life choices. She knew you could help tell the story. And you could help more people know somebody and get their arms around this. But why did this kid sister want her older brother to do this? Why did she want it for you?

SP: She knew it would be a gift in the strangest way. She worried about how I would be after she died. She worried about how all of us would be, but I know she worried about me. So this gift allows me to be present with her a lot, which I’m grateful for. And even as emotionally challenging as some of this interview has been, it makes me feel closer to her. And that’s I think that’s why.

DG: In your columns in the New York Times, you captured a love between a brother and a sister, and I want to thank you for taking the time to talk to us on Tradeoffs. 

SP: Thank you, Dan. I really appreciate what you did here. Thank you.

DG: I’m Dan Gorenstein, this is Tradeoffs.