He didn't want his sister to die. But her suffering helped him understand her choice

Journalist and author Steven Petrow remembers his sister Julie Petrow-Cohen as a self-described troublemaker with a huge smile. She loved the beach, gardening and her wife and two kids.

Petrow called his younger sister his "co-conspirator in life," recalling how they would sneak out together when they were younger and go to their respective queer bars and cover for each other with their parents.

In 2017, Julie was diagnosed with stage 4 ovarian cancer. After six years of treatment – surgery, chemo, recurrences and Hail Mary clinical trials – Julie made the decision to end her life using what's known as "medical aid in dying."

Medical aid in dying — or MAID — is legal in 10 states and Washington, D.C. These laws allow terminally ill patients to get a prescription for life-ending medications from a doctor. More than a dozen other states are considering similar legislation.

To use these laws, people must go through several steps. Most states require a person to be mentally capable and have two doctors confirm that they're within 6 months of death. They then must make multiple requests — oral and written — and wait for a period of several days between those requests.

Surveys show roughly 70% of Americans support people having this option, but the laws remain controversial. Opponents include many religious groups who argue humans should not take steps to end their lives. Pope Francis has said he supports palliative care that comforts people who are dying but opposes anything that "provoke[s] death."

Some disability rights advocates worry people with disabilities could be coerced into ending their lives, and a coalition of groups are suing to overturn California's law.

Supporters argue these laws prevent unnecessary pain and suffering. Steven Petrow said for his sister Julie, having this option gave her a sense of agency and control that often eludes people with a terminal illness.

"[Julie] didn't want to die," Petrow said. "But she didn't want to suffer."

Petrow said his sister wanted him to write about her decision to end her life, which he did for the New York Times. Petrow talked about his family's experience and what he'd learned reporting on the issue with Dan Gorenstein, executive editor of the nonprofit health policy news organization Tradeoffs.

Interview highlights:

On his reaction to Julie's decision to end her life

I had to undergo a bit of a journey when it came to medical aid in dying, and the idea that Julie might 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 cesarean, 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.

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 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 in teasing them apart. And Julie helped me do that. And talking to others did as well.

On what helped him accept Julie's decision

I really kind of moved along as I saw her suffer. 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 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. 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 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.

On barriers to more people using MAID, including needing to make multiple requests over several weeks

Time is often not an 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. 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 [quiet], and I think that hinders educational campaigns for sure.

On concerns raised by some disability rights advocates that medical aid in dying could lead people with disabilities to being pressured to end their lives

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 [of people using MAID laws to end their lives] — 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.

On the memories of his sister that have stayed in his mind since her death

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. 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.

On why Julie asked Steven to write about her experience

She wanted more people to have that choice. ... She felt she was lucky, by circumstance and happenstance, to live in New Jersey, [where medical aid in dying is legal]. 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 parity and access mattered so much to Julie.

She knew [asking me to write about her experience] 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.

This story comes from the health policy podcast Tradeoffs. Dan Gorenstein is Tradeoffs' executive editor, and Ryan Levi is a reporter/producer for the show, where a version of this story first appeared.

Copyright 2024 TRADEOFFS. To see more, visit TRADEOFFS.