S1: The Ending Matters- Stop Calling It “Assisted Suicide”(Stories of Suicide & Survival)

In 2014, Brittany Maynard exercised her right to an assisted death under Oregon’s Death With Dignity Act. She’d been diagnosed with terminal brain cancer less than a year earlier. 

Her death at age 29 — and her advocacy work for the legalization of assisted death — made headlines. 

Nora’s husband also died in 2014, also from brain cancer. But his and Brittany’s deaths were very different. In this episode, Nora and Dan, Brittany’s late husband, reflect on their partners’ decisions about how to spend the end of their lives. 

Transcripts may not appear in their final version and are subject to change.

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Hello, I’m Nora McInerny. And this is terrible. Thanks for asking.

And welcome to season two. This is season two of Terrible Thanks for Asking. We have been working all summer.

We’ve been working some of this. We’ve been working this summer. Don’t worry about what we’ve been doing this summer.

We’ve been working on a brand new set of stories that you are going to hear for the next many weeks. And we’re excited to share them with you and have you hear them. And we’re just going to ease in to things with a light question for all of you.

So, how do you want to die?

It’s tough for a Wednesday morning. I guess in my sleep. I think, yeah, probably in my sleep.

But I do like swimming, so drowning would be like, at least then I would be like having a lot of fun.

How do I want to die in my sleep? Probably very peacefully and not in any… That’s actually my biggest fear is dying in a very tragic way or like a very painful way.

Fast.

Oh, that’s a difficult question.

Peacefully.

Unafraid. Old age? In my sleep.

Isn’t that everybody’s kind of like hope, I guess? You know, you kind of think of like when you’re old and just like in bed and just like drift off in the night.

Can you believe so many people want to die in their sleep? And like 0% of them said they wanted to die a slow, painful death from brain cancer? That is wild.

That’s some groundbreaking stuff there. So if you have not heard this before, or if you did hear it, but you’re just a bad listener, maybe. My husband Aaron died of brain cancer in 2014 when he was 35 years old.

He had died in our home during hospice care, and it was just the two of us alone in a hospital bed. And then it was just me. So, how do you want to die?

If you haven’t seen someone die of glioblastoma, that incurable, aggressive brain cancer that Erin had, there’s nothing peaceful about it. So, to that question, I have a follow-up.

If dying in your sleep, all peaceful and unaware, if that clearly is not an option, then what do you do?

Yeah, exactly. And I’ve done that too, where I’ll ask a senator, an assembly member, giving your druthers, how would you prefer to die? How would you prefer that your last few moments play out?

And most people say, in my sleep, not even aware that it’s happening. And my response to that is, well, that’s what Brittany got, is the ability to pass away gently in her sleep.

You know, to me, the question to any of those outlets would be, all right, well, what do they recommend? What is their solution for Brittany? And when I’ve pressed people on that, you hear crickets.

They have no solution.

That’s Dan Diaz, Dan’s wife, Brittany Maynard, which for years I was incorrectly pronouncing her last name Maynard, by the way. It’s Maynard. Brittany Maynard died of brain cancer 25 days before my husband Aaron died of brain cancer.

But Brittany and Aaron took two different roads to death.

A terminally ill woman took her own life this weekend after battling brain cancer and the people who criticized her desire to die on her own terms.

She became an internet and television celebrity right before her death this weekend. She said her goal was to begin a national conversation about how we handle the end of life.

And true to her word, on Saturday, Brittany Maynard took her own life using medicine legally prescribed to her by a doctor. She was only 29 years old. She had terminal brain cancer.

So everything I said about brain cancer being awful, Dan knows exactly what I’m talking about.

The smaller seizures, those would leave her unable to speak for 20, 30 minutes afterwards.

It would just all be garbled. She could hear and recognize that it wasn’t making any sense. And she would be frustrated by that.

And I would just talk to her and tell her, you just had a seizure, sweetie, just let’s just wait a little bit for it to pass. And then you can tell me what you’re thinking.

And those were the small ones, the full grand mal seizures, those would leave her exhausted through that day and sometimes the following day.

When she’d come out of those seizures, on a few occasions, blood’s coming out of her mouth because she’s bitten through part of her tongue. That’s just the reality of what a seizure does to a person.

I was so, it took two years for me to actually see one. And so when he finally did, I was so surprised. They’re so violent, there’s nothing you can do.

And I was just thinking, oh my god, your body is doing this to you. You’re growing something in your head that is doing this to you. And he was so embarrassed by them and he hated them so much.

And I remember him having one when my cousin and her five-year-old were over for dinner and him being like, I’m going down, it’s happening. And me throwing him on the couch. And then right before he just, you know, they sort of like leave themselves.

He like looked at my cousin and said, I’m so sorry I ruined our dinner. Like that was the biggest deal that we weren’t going to eat, you know.

Right. Yeah, he was looking out for the effect that it had on other people. And Brittany would do the same.

She would feel bad that not only that her life was ending, but what did that mean for me and the plans that we had and what we were supposed to be doing at that point in our lives, starting a family and everything else.

Yeah, those moments are heartbreaking.

When brain cancer is terminal, there aren’t a ton of treatment options. And the effects of this disease just get worse and worse and worse. And Dan and Brittany quickly figured that out.

That brain tumor, they were able to remove about 35% of it.

And that was it. And that’s where Brittany started doing her research and came across the way that a brain tumor can end a person’s life.

The symptoms, a simple search on the internet would, you know, it shows, it highlights that constant pain, that not even morphine can alleviate. Brittany was on some hefty doses of Dilaudid. Dilaudid is four times stronger than morphine.

She had constant pressure in her skull. Those seizures were getting increasingly frequent, and each one was more severe than the previous one. Those are what terrified Brittany the most.

She, what was coming next, as the tumor grows and puts pressure on different parts of the brain, behind the eyes in particular is that she would go blind. She would lose her eyesight. Partial paralysis was a possibility, complete paralysis.

It’s common for a stroke to occur. And of course, the person can lose the ability to communicate altogether. The inability to stand, walk, swallow.

And each one of us would do this research, sometimes sitting right next to one another.

Erin and I were not Googlers. We looked up glioblastoma one time and never again. And you can try it yourself if you’d like, but just take my word for it, don’t.

Erin and I didn’t know what to do with that kind of information, all those statistics. So we just sort of proceeded with life. Doctors appointments, chemo pills, radiation, brain surgeries, plural.

We went to work. We both went to work, by the way. Erin kept working.

We had a baby. We thought, numbers, forget those. We’re just going to live our lives.

And our lives, besides all those doctors appointments and the eventual decline of Erin’s health, they were just normal, like pretty normal. We were just regular people living our regular lives. And cancer was not the headline.

Cancer was an asterisk. It was a footnote.

When they said you have three to five years, we’re thinking, OK, we can beat this. Both Brittany and I, we each had a family friend whose parent died of a brain tumor. So we knew firsthand what was coming for her.

And that’s where Brittany simply said, I will not die like that. Her goal was always to live as long as she possibly could. But she refused to have to endure the dying process that that brain tumor would exact upon her.

That’s where she figured that to the extent that she could, she would take back that control from the brain tumor. As she told me, she said, Dan, if shit gets bad, we’ll move into Oregon.

So this is the moment where my story with Erin diverges from Dan’s story with Brittany. Moving to Oregon wasn’t just so Brittany could fulfill some sort of bucket list of living in a gorgeous state.

It was because Oregon was the closest state, and one of only five states at the time, that provided medical aid in dying. What were the other states, you might wonder? Well, I Googled it for you so that you don’t have to.

You can just keep doing the dishes or running, whatever you do while you listen to podcasts.

The states that, as of publishing this episode, have legalized medical aid in dying are Washington State, Washington, DC., which is not a state, Montana, Oregon, Vermont, Colorado, and Dan and Brittany lived in California.

And California is on that list now of states that have medical aid in dying, but it wasn’t when Brittany was sick. So that’s why Brittany and Dan were talking about Oregon.

Because if, as Brittany said, shit got bad, that was the closest place where she could utilize medical aid in dying.

I didn’t know what medical aid in dying was. And so when she first mentioned it, I’m thinking, wait a minute, what are you talking about? At that point, I was just, you know, hospice is what a person enters that end of life.

It was during that conversation where I recognized, wait, if this was me, I’d be saying the same thing to her. But the focus is always on living as long as you possibly can.

Brittany was fighting that, fighting that tumor with everything she had, but she was also, and this is one of those cases where I just wish people had the opportunity to know Brittany, to meet her.

She was such a determined individual, such a pragmatic individual, such just, I don’t know, kind of a, certainly a force of nature, her spirit, her determination, her will to live. But she was also very realistic.

So for people who don’t know how this works, and might be concerned that it’s basically just a nurse putting a pillow over your face, or that if anything is wrong with a person at all, they could just do this, or that it’s somehow a way of

sanctioning or encouraging suicide, I promise you it’s not. There are rules, and Dan can explain them to you, because that is what he does now. He flies around the country trying to explain to legislators what exactly his wife did and why.

The parameters of this program are that two physicians, independent of one another, have to agree that this person is terminally ill, that they have six months or less to live, that person has to be mentally competent, they must make the request both

verbally and in writing, there’s a 15-day waiting period, there’s witnesses involved. All of those things exist to protect that terminally ill patient. And Brittany felt extremely protected throughout this whole process.

The biggest safeguard is that the individual has to be able to consume that medication on her own. And the medication is cecobarbital, it’s a sleeping medicine. It’s been around for more than 80 years.

And when it’s taken in such a high dose, what it does is it starts to slow all functions, including the person’s breathing.

And so that’s typically how the person passes away, is their breathing slows to the point where their breathing stops and they die that way.

So Brittany and Dan are discussing Brittany’s death and her options.

And really, there was no convincing that she had to do.

That was just a very honest conversation where by the end of it, you know, recognizing that, yeah, no way, that there was nothing, there was nothing that would convince me that a person has to endure that type of dying process.

Erin had glioblastoma, he went through all of the treatment and he ended up entering hospice on November 11th.

And watching him in that bed, in our house, pumped full of drugs and sleeping off the last couple weeks of his life, I just thought, there’s nothing natural about this. And at that point in time, Brittany’s story was everywhere.

People would bring it up and we read about it too. And I remember, I don’t think I said this to him, but I remember thinking to myself reading it, she’s so smart.

She’s so smart for doing this, because at that point in time, Aaron’s tumor had started to take things from him that we had not anticipated, that you just can’t really think of if you’re trying to be an optimistic person and trying to live in the

moment and trying to just live and pay your bills. And it had started to shut down parts of his body, his personality had remained intact, which now, after knowing so many other brain tumor spouses, I realized it was such a miracle.

And it was a horror show, honestly. Like he was having seizures in front of me, in front of our child, in public, which was so embarrassing for him, just humiliating for him. He needed my help for everything.

He was four inches taller than me. I’m six feet tall. I’m not like a little lady or anything.

But I mean, that’s hard to do.

And it’s hard to do, not just physically, but it’s hard to watch someone you love, who’s 35 years old go through something that is just so outlandish and that none of your peers can relate to because the person they love is still healthy.

And they believe in their hearts that this is just something that will happen to them, maybe 40 years, maybe 50. Coming up after the break.

But I am dying, and I refuse to lose my dignity. I refuse to subject myself and my family to purposeless, prolonged pain and suffering at the hands of an incurable disease.

I mentioned that Dan and Brittany were Googlers, and Erin and I weren’t. They knew what she was up against. And they knew that they were privileged to be able to move to Oregon, so Brittany could live the rest of her life the way she wanted to.

And Brittany didn’t think that was right. She didn’t think that it was right that they had to uproot themselves to Oregon for something so personal. And she didn’t think it was right that other people didn’t have that opportunity.

My name is Brittany Maynard.

I am 29 years old, and I am terminally ill. On New Year’s Day 2014, to my great shock, I learned I had brain cancer.

So Brittany made a six and a half minute long video with a medical aid and dying group called Compassion and Choices.

Every terminally ill American deserves the choice to die with dignity. Let the movement begin here, now. Access to this choice lies in your hands.

Freedom from prolonged pain and suffering is a most basic human right. Please make death with dignity an American health care choice. Thank you.

And it blew up.

On October 6th of 2014 was when all that media attention started.

As we’ve been showing you this morning, 29-year-old Brittany Maynard is starting a national conversation about choosing the way to die.

The video and the debate went viral.

Many civil and religious organizations expressed opposition.

The number one message we would want to get out to anyone who is thinking of assisted suicide is that every single person has worth.

And it doesn’t matter the stage of life you’re in, it doesn’t matter if you’re suffering or not suffering.

Her candor about death has revived the national debate over physician aid in dying. In a recent poll by the New England Journal of Medicine, 67% of health care providers said they opposed the practice, as does the American Medical Association.

Many fear it could be abused in cases involving the elderly and disabled.

A young woman named Brittany Maynard, who has reignited a debate over dignity and death, facing a terminal illness and an agonizing choice, taking her own life on her own terms.

Because she knew she wasn’t going to live long enough to testify or to speak with legislators, her intention was to make it so that legislators would take notice and pass legislation in more states.

She had no idea, we had no idea, that it would get the media attention that it did.

What was her reaction? Because it’s the end of her life and it’s such a time when it’s really natural to sort of make your world smaller. And at the same time, she is everywhere, everywhere.

It was a shock.

Brittany is an introvert. So it was outside of her comfort zone. And all of a sudden, her telephone, she’s getting text messages from friends across the country saying that they saw her on the news.

And at one point, Brittany, she asked me, she says, Dan, what do we do with this? And we talked about it. And she was concerned that she would she have enough energy to work on this cause.

And she decided that she would allow the media to be a part of our life for two weeks. So between October 6th and October 17th, that’s when any interview that she did, that’s when it all took place.

And then after that, she said, we go back to family time and no more media. But I was basically kind of the gatekeeper.

I had this like, just vision of you in this beautiful place, but also like your phone just like vibrating and like sort of breaking the spell.

But also it being like this important work that you’re proud of her for and that’s just is so complicated and overwhelming.

And this just gets back to Brittany’s personality. Sorry. Brittany was…

Brittany was not one to… just to stand by on the sidelines if… Mm, sometimes the emotion just comes up.

So Brittany was not one to just stand on the sidelines if she thought that there was something wrong, something that needed attention, something that she could affect change.

She was speaking up for anyone that was ever to find themselves in her predicament. Um, so that they could at least have the option in their home state and not have to leave like we did.

So um, so yeah, I am immensely proud of everything that Brittany endeavored to accomplish during those ten months.

I think that part of why we can’t talk about these things is because people are so afraid of death and we’re so removed from death. And it seems like, like it’s the opposite of life when really it’s just a part of life.

And if everyone had that hand in like the end of their life, maybe people would have less fear.

Death, death is a part of life. Death is a part of living. It’s happened to everyone who has come before us and it will eventually happen to each and every one of us.

And so there’s no reason to be fearful of death. Death is not and cannot be equated with failure. The idea that somehow any of us fail because eventually one day we die, I mean, what kind of a world would that be to live in?

It’s like, oh, we’re all failures. Eventually, we’re going to die. No, death, and I emphasize it with the medical community in particular because they go to med school and they’re taught.

Their whole goal is, well, we have to keep our patients alive. We have to do everything we can for them. To Brittany, what would have been failure is not death.

What would have been failure is suffering.

Just consider the words we use when someone is sick. It’s a vocabulary that made both Erin and I bristle.

That it’s a battle.

That it’s a fight. That you’re a warrior. I mean, you can want to win.

You can do everything right. But really, most of it is out of your control. It’s not like you beat a terminal disease through willpower or faith.

And I’m not saying that positive thinking is pointless, Erin was mega positive, or that faith is dumb, because believing in something is beautiful. And if you have that, yay, I’m just saying that cancer doesn’t care either way.

There were days where Brittany would wake up and just tell me, she’d say, Dan, you know, keep an eye on me today, because I feel like I might have a seizure. She could kind of predict when a seizure was going to occur.

Which each seizure was just a reminder of what she was risking, I guess, in one sense.

If a stroke occurs and she does lose the ability to swallow, she would then not be able to utilize that medication, in which case she would then be essentially trapped in her own body, lying in bed, dying the very way that she was trying to avoid.

Basically, Brittany had a window. This disease is just a downward spiral, and if Brittany waits too long, if she has a stroke and she can’t swallow, then she can’t take the medicine that would help her die.

So every day is a balance between wanting to live as long as she can, but not living so long that she can’t choose her death.

So on the day that Brittany died, we got up that morning. She had a small seizure that day, and she wanted to take the dogs, we had two dogs, for a walk, go for a hike with them.

And, you know, Brittany was moving certainly a lot slower than she used to. And we were there with her friends and my younger brother and her parents. And so we took the walk and we got back to the house.

And Brittany just said to me, she said that it’s her time. That, you know, she called her friends into our bedroom, and she started talking to them, and there were certain things that she wanted them to have.

So there was no depressed feeling or, I’ve said like a dark cloud over it. If anything, it was just a loving and supportive feeling in there for Brittany.

We were all sharing stories, and she was asking for people to bring up a happy memory and share those.

So Brittany said her goodbyes. She took her dose of Cica Barbadol, and then…

Within five minutes of taking the medication, she fell asleep very peacefully. There’s that part of you who doesn’t want to lose the person you love the most in the world.

But there’s also that part of me that’s recognizing how selfish of me to say, I know you’re dying and you can’t sleep at night, and you have this constant level of nausea and vomiting sometimes and all this pain that you feel, but go ahead and endure

another one of those days for me. You know, do that, do that for me. And tomorrow and then the next day, and maybe the next day after that, and just keep suffering through these days? No, there’s no way.

So it was that recognition that this is the person that I love more than anything, and she is in her dying process. And I’m going to, you know, think about and miss her forever.

But there was certainly no part of me who was thinking that I would impose my own selfish wish that she continued to endure that suffering that she’s, and that it’s gonna get worse.

So I guess it was something that I had tried to prepare myself for, for those 10 months. And within 30 minutes, her breathing slowed to the point where she passed away.

24 days later, I was laying next to Aaron while he died. It had been a full week since I’d heard his voice, since he’d opened his eyes for more than a moment at a time. He was there, but not there.

And I thought of Dan, because Aaron happened to die right after Brittany, and of the same thing, and to some people, that seemed like a really good time to use my husband’s death to shame Dan’s wife.

And you might be thinking, wait, what are you talking about, Nora? Well, let me tell you a story. If you follow me on Twitter, one, why I add no value to your life, and two, you know that in Twitter, like in life, I have two modes.

The first is, everything is fine. We’re all just little aliens in skin suits trying to do our best. And the second is, I am enraged over something and ready to tweet about it until my thumbs fall off.

And I am not proud to say this, but on the day Aaron died, the same day when I lost half of myself, I slid from mode one into mode two, because someone tweeted at me and I saw this headline.

This man has the same cancer as Brittany Maynard, but his response is priceless. Now, the image with this tweet was a family photo used without permission of Aaron and I holding our son Ralph.

And I was pissed.

I didn’t even need to read the whole poorly written article to know that I was reading some straight up bullcrap written by a person who had never seen brain cancer up close.

Now, for the future, you should know that if you use my husband’s death for clickbait, I will come for you in your mentions. I will ruin your timeline.

Even if my husband is literally dying next to me, even if I’m sitting in his hospital bed, in our house under a little afghan with him, I will take a break from my vigil to send you strongly worded tweets during the holy time of death.

I am ashamed of this, but also it was kind of classic Aaron and Nora, because, you know, I was narrating the situation for him, and I could feel him being like, Nora, you crazy bitch, I love you, but when I’m gone, I’m gonna need you to take your

chill pills. But the reason this Twitter fight was important to me is because I didn’t want Dan to count me and Aaron among the people criticizing Brittany, because the truth is, we didn’t choose Aaron’s end of life. It just happened.

The only way it legally could have happened in Minnesota. Obviously, it was just like a way for me to release the rage that he was dying at age 35.

But I look back, I’m like, why would I have wasted that time arguing, but it felt like the right thing to do. I was also so concerned that somewhere out there, you would see it and think that I felt that way.

When really, Aaron and I had talked about you and Brittany during many of our conversations about death. Because we had been there, and because we were there, we knew that it wasn’t her choosing death over life.

It was her choosing a good death over a horrifying death, or an okay death. Not a good death, but an okay death. A good death is like closing your eyes when you’re 100 years old and never waking up.

Yeah, there’s times that I’m mad at the universe for the way that everything has played out.

There’s a saying, Brittany and I were together for seven and a half years, and there’s a saying, you can cry that it’s over, or you can smile that it happened. As much as possible, I try to remember the good times and I’ll choose to smile.

Our wedding day, our honeymoon, just those, all of those moments make me smile, and so I try to focus on that.

That quote, by the way, was from Dr. Seuss. And Dr.

Seuss said a number of other valuable things. Red fish, blue fish, one fish, two fish. This one has a little car.

This one has a little star.

Read a lot of Dr. Seuss.

And as he also said, don’t reduce your fellow humans to a single sad story, because we’re more than just our sad stories, and don’t be a dipwad who compartmentalizes people and reduces people and judges them. I’m pretty sure that’s Dr. Seuss’ quote.

Now that I think about it, the rhyming structure is not great. So regardless the sentiment stands, just don’t be a dipwad. If you’re thinking about criticizing someone’s life or death, just remember that they are more than that.

They’re more than what you know, and so was Brittany. She loved to travel. She loved rescuing animals.

Before she got sick, Brittany and Dan were planning for their family.

In reality, her story is not about death and dying. It’s about life and living.

There was just so much about her that at times when the focus of Brittany Maynard and Death with Dignity, and I’m thinking, well, she certainly did a lot of good, but I sit here thinking to myself, tip of the iceberg.

I wish people would have known, you know, everything else about this wonderful person that I had the distinct honor and privilege of calling her my wife.

Yeah, I can’t even imagine what it would have been like if what Brittany was experiencing would have continued to get worse and worse and worse. She made her ending according to the way that she saw fit for herself.

But I know that was also very intentionally a Brittany looking out for me. And to me, it was such a… The idea that endings matter.

And Brittany was just taking control of her own ending.

I don’t know if Aaron would have done anything differently, and I don’t know what I would do if I were in his shoes. I don’t know what I’d do if I were young with an incurable disease that promises a painful death.

Sometimes I’ll be alone and I’ll remember something. I’ll remember the sound of his body hitting the floor in our living room, and I will say out loud to myself, nope, never, never.

And sometimes I look at the sun we share and I think, I would do anything in the world to spend as much time as possible with you. I would do anything. But most of all, I just hope I never find myself in that situation.

I hope I never have to make that kind of choice. I hope I just die in my sleep. As usual, this has been terrible, thanks for asking.

I’m Nora McInerny. My producer is Hans Butow. That is all you need to know about him, his name and that he is mine.

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