Transcript

523:

Death and Taxes
Transcript

Originally aired 04.25.2014

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Prologue.

Ira Glass

In Janah Boccio's Health and Human Relations class, they're studying puberty now. And for the entire period, the sixth-grade boys were a squirming, moving, fidgeting, chatty mess.

[BOYS LAUGHING]

And can I say, as they get deeper into the material, they do not seem to see much of an upside to puberty at all anywhere. When they notice that one of the books uses the word "enjoyable" to describe sex, one boy declares--

Boy 1

I don't think so. That's disgusting.

Ms. Boccio

Why are you saying that?

Boy 1

Because it's disgusting.

Ira Glass

And when Ms. Boccio asks the boys if they're looking forward to any part of puberty--

Boy 2

Growing in height. Not anything else.

Ms. Boccio

OK.

Older Boy

A lot of things are growing.

[BOYS LAUGHING]

Ms. Boccio

So is there anything that you're not looking forward to?

Boy 3

I'm not looking forward to pubic hair.

Ms. Boccio

Why?

Boy 3

Um, because it might be weird.

Ms. Boccio

What else are you not looking forward to?

Boy 4

Chest hair.

Boy 1

Sweating more, like a lot more. Like, getting really smelly.

Ms. Boccio

Chest hair.

Boy 5

Sweating like a moose.

Boy 1

You're going to smell more bad. You're going to sweat. Your shirt's going to get all sweaty, and it's going to get worse.

Boy 6

Not entirely.

Boy 5

Yeah, because when I was younger, it didn't smell like this.

Boy 1

No, you smelled better. And now, like, you smell bad.

Ira Glass

They said that shaving seems like it's going to be a drag, which, by the way, good call, kids. Several boys squealed that the illustration of pubic hair in the book looked like burnt macaroni and cheese. Near the end of class, one of the kids, Jack, told me that part of what's so freaky is that just don't know when puberty is going to strike you.

Jack

It's scary, because it's not like a set date and time. It can happen when you're eight, or happen when you're 16. So you're not like 100% prepared. It's like a mysterious monster.

Boy 7

You know it's going to get you.

Boy 8

It's going to get you at one point.

Ira Glass

So it's like you know that there's this thing that's coming to get you. You don't know when it's going to be. And you're going to be totally different on the other side of it.

Boy 8

Yeah.

Boy 7

Yeah.

Ira Glass

On the opposite end of the country in northern California, 10-year-old Paris was in a similar class, a class about puberty, for moms and girls. And she described the approaching monster in different terms that got across pretty much the same idea.

Paris

It's a little scary almost. I guess it's a little like on the edge of a cliff, like there's a really good movie coming out and you're just about to see it. But people say that it can be either bad or good, and you're not really sure which.

Ira Glass

Paris told the reporter that she talked to, Marianne McCune, that she was one of the first ones in her class to hit puberty, which, of course, is not fun. Like most kids, I think, she did not like looking different from everybody else.

Paris

It's like you don't want it to happen. Like, you want your body to stay the same. You don't want your body to look gross. And so it's kind of gross being different. Yeah, I really didn't want to.

Marianne Mccune

Did you think there might be a way out?

Paris

[SIGH] No. I didn't think there was going to be a way out. I mean, I was hoping that there would be some type of medicine or something that I could take, and it would go away. But no, it didn't really work that way.

Ira Glass

A lot of kids feel this way. In these classes, they ask the teachers, why does this have to happen? And is there anyway I can stay a kid?

It's crazy to be told you can't do anything about this. It's coming, and when it happens, everything will be different. How many things in our lives are like that?

Well, today on our show, we have stories of people dealing with the inevitable, trying to do their best, trying to stay themselves through these things that could be so confusing and potentially soul crushing. And we're not going to mess around with a little inevitable things in life with, you know, traffic, and a relative you don't like, and what happens if you never brush your teeth.

No, no, no. We're going to go with the big ones. We're going to go with two inescapable things that are absolutely certain. Act One of our show is about death. Act Two is about taxes.

These are two things that are unavoidable that actually I think most of us don't know that much about. And today, we turn to people who know more than us. Prepare to be surprised at what they say. From WBEZ Chicago, it's This American Life, distributed by Public Radio International. I'm Ira Glass. Stay with us.

Act One. Death.

Ira Glass

Act One, Death. So we can only guess at what happens to us after we die. But we do not have to guess at what happens right before. Though most of us remain ignorant until we arrive at that moment ourselves.

Nancy Updike found a spot where she could understand all this better. If you're listening to this story over the internet or on the podcast, note that we have unbeeped two words that were beeped in the radio broadcast of the show. If you prefer a beeped version of the program, you can get that on our website, ThisAmericanLife.org. Otherwise, here's Nancy.

Nancy Updike

Before I tell you where I went, let me tell you why I wanted to go. Four years ago, my mother's husband, Asa, was dying. She was taking care of him at home with help from a hospice. And I went to be with her and him for the last 10 days of his life.

He was this tall, very funny man with beautiful manners who adored my mother. I felt clumsy and helpless all the time in those last days with Asa, with my mom. I didn't know what to say to someone who's dying. I didn't know how to be. I'm sure that's true for lots of people.

I remember checking in on Asa one afternoon and asking him if he needed anything. He looked at me and said, I need everything. We both laughed. That was the closest I ever got to talking with him about what was happening.

There were people around who did know what to do, though-- the nurses. I watched them from my stupor of awkwardness. They never brought any false cheer into the room with Asa, which is hard not to do with a dying person. They were direct.

When Jackie, the weekend day nurse, left the Sunday before Asa died, she said to him, is it OK if I kiss your hand? And then she said, God willing, I'll see you next week.

The nurses knew how to deal with us, the rest of the family, too. One of the nurses, Jenny, got me cleaning out the fridge one morning. We did it together for an hour and a half, just talking, passing the time. It wasn't until later that I realized, oh, she did that for me, to give me something to do. It was a strange feeling to know I was that transparent to her.

For the last hour of Asa's life, the people in the room were my mother, one of Asa's sons, Jenny, and me. We held Asa's hands. Jenny was standing, and she sometimes touched Asa's head gently. She told him, it's all right. It's OK. Your family is OK. Everyone is all right.

Asa's eyes were open. They'd been that way all day. He was staring up and to the right, over our heads. He didn't see us. He moaned every once in a while, and we spoke to him when he moaned.

The four of us watched his breathing slow down and get shallower, until he was taking just sips of air. When he was very close to the end, Jenny brought over a glass of water and a little dropper that we'd been using to moisten Asa's mouth. And she told us each to take the dropper and give him some water and say our names close to his ear, so that he would know who was giving him each bit of water.

As a ritual, it felt comforting and sad and vaguely religious. And Asa's son and I were both crying. I had no idea how badly we'd needed a ritual at that moment, until Jenny gave us one.

I had never seen the kind of expertise these nurses had. They knew death. They seemed to understand it, whereas I, even though I had just watched someone fade away and die right in front of me, all I could think was, what just happened?

But I didn't realize how much of a hold all of this had on me still until I heard a stranger talking a few months ago about how his mother is a nurse who works in a hospice facility, seeing people die almost every day. And then he went on to say that after his mother had worked there for a few months, she forgot the president's name. And when she mentioned that to her boss, her boss said, yeah that happens. That's normal here. Your brain is blocking out a lot of what you're seeing. And some other stuff is getting blocked, too.

My first thought was, my god, of course. They're experts, not robots. My second thought was, I need to go to this place and talk to these people.

Pattie Burnham

This guy wants to pass me. Usually nobody ever passes me. I'm on my best behavior with you in the car.

Nancy Updike

So this is Pattie Burnham. She's the one who forgot the president's name. That was five years ago, though. She's on top of it now. It's Barack Obama, by the way.

Pattie's a registered nurse, and the place she works is an inpatient hospice about 30 minutes north of Boston called the Kaplan Family Hospice House. We're driving there now. Pattie's got a double shift today. I told her my whole back story, so she knows why I'm here.

Pattie's 5' 8", blonde, full of energy, even though it's 6:00 AM. She's lived in this part of Massachusetts her whole life, worked at a hospital, then as a nurse at her kids' school. And then when they graduated, she was looking for another job. And she went to the Kaplan House.

Pattie Burnham

I pulled into the parking lot and thought, wow, this place is beautiful. And then I noticed off to the left there's sort of a back entrance, a garage entrance. And there were two funeral home cars pulled up there waiting. And I just sat in the parking lot, sort of staring at the house and staring at the cars and wondering what could possibly be going on in that building.

Nancy Updike

Hospice can mean a building, like Kaplan, or home care, like Asa had. They both mean the same thing. The patient is not looking to be cured. It's palliative care for people at the end of their life.

The Kaplan House actually is beautiful. All the rooms have big windows. The lobby and main common area have vaulted ceilings and skylights. Nothing is covered in plastic.

I overheard one family member of a patient say, the thing I like about this place is there isn't a phony plant in here. All the flowers are real. There's a big kitchen for any patients who can still eat.

Pattie speed walks by.

Pattie Burnham

I need a fruit cup for Room Four, please and thank you.

Nancy Updike

This is not just a place for rich people with private insurance. Lots of patients are on Medicare or Medicaid. Kaplan House is run by a nonprofit called Care Dimensions. And the bulk of what they do is home care. Kaplan House has rooms for just 20 patients, and it's not full today.

But Pattie's busy. She rushes between rooms and then slows down as soon as she steps inside one.

Pattie Burnham

Does she look comfortable to you?

Crystal

Yeah.

Nancy Updike

Pattie's talking to Crystal, the daughter of a 51-year-old woman named Lori, who came to Kaplan House a few hours ago. She has lung cancer. It's metastasized to her brain.

Lori's delirious, making sounds but not speaking much anymore. Her family's been taking care of her at home. They tell Pattie that Lori always liked to look good. She has a perfect red manicure and pedicure.

Pattie Burnham

Yeah, you've been taking beautiful care of her. She looks beautiful. If you want to chat about anything, if you have any questions about the medications or what's going on, you know, we can step outside. And you know, you might not have any questions now, but they might come up.

Crystal

Right. Thank you.

Pattie Burnham

Right?

Crystal

Yeah.

Pattie Burnham

OK.

Nancy Updike

The questions do come up. Crystal comes and finds Pattie. And she does something I remember doing. Crystal starts out asking about one small, specific thing to try and get a handle on what's happening. She wants to know what is the tube that's on her mother's face, right under her nose.

She asks so quietly, it's hard to hear. But she says, what's that thing on her nose? She smells like bleach.

Crystal

What's that thing on her nose? She smells like bleach.

Pattie Burnham

Oxygen. That's just oxygen. Yeah.

Nancy Updike

This question-- basically, what is that thing on my mother's face that is making her look and smell like she's not my mother-- that's just the first in a giant, unsorted pile of questions about what's happening and why and what am I supposed to be doing and feeling. Crystal says some of the family and friends in the room have been saying that no one should touch Lori.

Pattie Burnham

Not to touch her?

Crystal

Yeah.

Pattie Burnham

You can touch her.

Nancy Updike

From there she tells Pattie in one long, crying sentence that people in the room have been telling her mother that it's OK to let go. And one of the times someone said it, her mother all of a sudden said, no. And what does that mean, since she's delirious?

And should I be saying it's OK for her to let go? In some ways, I wish she would let go so she wouldn't suffer anymore, but I feel weird even thinking that. And my mom's gotten close to the end like this a few times before, and then she's come back. And maybe that's what's happening.

And some people in the room are saying you guys are drugging her so that she'll die faster. And I don't know about any of this. I don't know. Pattie listens to the whole thing and then jumps in.

Pattie Burnham

So a lot of people, Crystal, ask these questions. We are not drugging her to put her to sleep. I wouldn't do this job if that was the case. Your mom, I'm sorry to say, is dying. You know, she has started her dying process. Everything you're seeing is part of the dying process.

Crystal

Because I know they keep saying she's going to die. And she's done this, like, three or four times and got through it. And I'm just wondering what--

Pattie Burnham

So the things I'm seeing that makes me think that it's this time, this is the time, is her heart is beating really, really fast and just sort of fluttering. Like you can't feel a good, strong pulse out here. Her legs and her hands are cold. Her feet-- it's showing a telltale sign that we see called mottling, where the feet get and the knees get sort of dappled, like little purplish marks. And it just means her body's conserving all her blood to be around here.

Crystal

Right.

Pattie Burnham

I would bet my nursing license that your mother is not going to turn around from this. But if her body is meant to turn around, I'm not giving her anything that won't allow her to turn around. Does that make sense to you?

Nancy Updike

I remember standing with my mother and one of Asa's nurses in the kitchen and having this conversation, the "this is it" conversation. There are so many stages to a long decline, dips and resurgences and good days. And you know, you know it's all the same thing. It's all dying.

But there's a huge difference between dying and the very last part of dying, what Pattie and the other nurses call actively dying, a process that can take hours or even days. But it's different from what comes before. And being familiar with one doesn't mean you'll recognize the other.

I talked to Pattie later and I asked her how she knows when someone is actively dying. How does she know it so well that she would say, I'd bet my nursing license that this is what's happening?

Pattie Burnham

I don't always feel that way, you know.

Nancy Updike

Yeah.

Pattie Burnham

It's a weird thing, because when I came to work at the Kaplan house-- and I was a registered nurse and had worked as a nurse for a while-- I followed another nurse, Jeanette, for a month. And I was floored by the whole dying process, because it was nothing that I had learned. And I saw Jeanette say to a family-- she woke them up and said, he's dying. He's dying right now.

And the man had been there, the patient had been there for a week. And I didn't know what was different. I didn't know what she saw that was different.

And when I asked her to explain it to me and to teach it to me, she said, you'll know. You just need about a month here and you'll know.

Nancy Updike

I talked to a palliative care doctor who told me that the most important thing she got better at with experience was looking for openings that allow you to be helpful, little windows, little moments. With hospice, part of that is trying to help people take in, bit by bit, the realness of what's happening. Some dying people-- no surprise-- are not at all OK with the fact that they're dying. And they don't often get a chance to just say so.

I saw a home care nurse talking to a man, a former math teacher in his 60s. She was talking about antidepressants, asking him whether he was depressed. He thought about it. And he said, well, I'm not "jump out the window" depressed, more like, what the fuck happened?

Asa was a courtly man. I never heard him swear or even speak harshly in my life. But I could tell how frustrated he was sometimes buy the sheer logistics of being a dying person, the imposition of it. Sometimes just the question "do you want this" seemed overwhelming.

Dying is a constant series of judgment calls and decisions based on options that are very far from what anyone would want. And one thing the nurses are experienced at is trying to make the best of those narrow options.

Pattie Burnham

Joanne, it is no bother, first of all. And Christiana and I were going to do it together. I would love to give you a shower before you head home.

Nancy Updike

Pattie's crouching next to a woman named Joanne who's going home later today. She has lung cancer, and she's been getting hospice care at home. But her pain got worse, so she came to the Kaplan House for a few days of round-the-clock supervision while the doctors adjusted her pain medications.

People sometimes come in and out of Kaplan House like this. They're dying, but they still have time left in their lives. And the staff tries to get their symptoms under control-- pain or vomiting or whatever it is-- so that they can do more with that time than just be sick.

This room smells bad. It's strong. Joanne hasn't been able to shower in a little while. She said she has a hard time doing it at home. She's tiny in the bed, barely looking up, talking almost inaudibly. But her strength of will is intact.

She knows the ambulance can't pick her up and take her home until later, but she wants to be home, now, already. And anything that isn't going home is something she doesn't want to do, even though a couple of hours ago, she was glad when Pattie suggested a shower, because it's much easier to do here when two people can get on either side of her and steady her.

Pattie Burnham

I just feel like this is such a great opportunity, because it's so hard to do at home. And there's two of us here.

Joanne

Why can't I take a shower in my own shower?

Pattie Burnham

Do you do that regularly at home? Or is it hard because you need two people? Because you were telling me you don't feel that safe with the left side.

Joanne

Yeah, but I do have-- what do you call it? I have that--

Pattie Burnham

The bar that you hold onto and stuff. Yeah. Want a back rub, or a--

Joanne

Yeah, maybe a back rub.

Pattie Burnham

OK. OK. Yeah, it helps with your pain. We could put some lotion. Can we wash your back?

Joanne

Yeah.

Pattie Burnham

Want to head into the bathroom? And you can sort of sit on this in the bathroom. OK. Let's do that.

Nancy Updike

Maybe you can tell where Pattie's going with this. I'd seen her taking care of Joanne and others all day, people clearly in the midst of some of the worst days of their lives-- afraid, in pain, sick of being sick. And it takes serious skills to be able to nudge somebody in that situation toward a thing that they don't think they want, but are very glad when they get it.

Pattie Burnham

Can we take your pants down so she can get your backside?

Joanne

Yes.

Pattie Burnham

All right. Is that a comfortable position for you? Joanne, you do know we're getting pretty close to a shower.

Joanne

Yeah.

Pattie Burnham

You sure you don't-- look at how--

Joanne

Go ahead.

Pattie Burnham

Go ahead. Woohoo, woohoo.

Nancy Updike

Joanne's husband, Larry, had been sitting quietly in the room this whole time. He'd agreed that a shower was a good idea, but he didn't want to push Joanne on it. And then he seemed happy when she decided to do it.

Once she was in, both he and Joanne relaxed a bit. Joanne joked around with Pattie in the shower. And Larry got up to leave and go home to get the house ready for when Joanne got back. They've been married 27 years.

Pattie Burnham

Do you want to give him a grocery list or anything, Joanne? A little honey-do list before you get there?

Joanne

No. Love you, hon.

Larry

I love you too. See you soon.

Pattie Burnham

Your tailbone's sore? All right. We'll make sure to get that.

Nancy Updike

There's a note on the Medicare website about hospice saying hospice isn't just for cancer. I saw people at Kaplan House with other conditions-- end-stage dementia, congestive heart failure. But mostly I saw cancer. Asa had cancer.

At the Kaplan House, I realized I had questions about the physical part of what had happened with him. I saw other people who had that extreme cancer thinness. I learned the medical term-- cachectic. It's from Greek words that mean bad condition.

In a few rooms, I saw the same swabs, these little green sponges on the end of a stick that we used to keep Asa's mouth clean and moist. The swabs stayed with me, because I remember being grateful that they gave us a way, a small way, we could care for Asa, even after he stopped being able to tell us what he wanted.

That was the hardest time, for me at least, to hear him groaning and not know what to do or not do. We grilled the nurses about what they thought was going on and what we should do. And at the Kaplan House, I saw that a significant part of the nurses' jobs is trying to figure out what a person might need when they can't communicate anymore.

Pattie Burnham

Are you having pain? Does something hurt?

Lori

I, uh, I--

Nancy Updike

Pattie's back in Lori's room, Crystal's mother. It's nighttime. We're into the double part of Pattie's double shift. And Lori is moving around a lot in the bed. It sounds terrible to say, but I feel comforted to see it and to see others at Kaplan House do it too, because I'd seen it with Asa.

Lori

[MOANING]

Nancy Updike

Apparently, it's common toward the end. It's called terminal agitation. Lori's family hasn't slept in 24 hours because Lori was up all night last night, delirious, moving, sometimes trying to get out of bed, even though she's too weak to stand and could easily break a bone if she falls. It's exhausting to deal with and hard to watch.

The problem with agitation, as a palliative care doctor told me, is that it isn't a diagnosis. It's something you see, but the person can be doing it for lots of reasons, each of which calls for a different approach. They could be constipated, anxious, in pain, some combination. A dying person is like a baby that way, except we know even less about a dying person's brain than we do about a baby's.

Some of the guesses we make are based on what we know from coma patients. But a dying brain is not a comatose brain. It's different. And in terms of what a dying person perceives, someone who's non-responsive, the science of it, we know almost nothing. The nurses told me they assume that people can hear us right to the end, but no one knows for sure.

Lori's eyes are open, but it's that distant stare like Asa had. She's not seeing what's in front of her. Her mouth is open, and she's squirming in the bed. She was a sign language interpreter, and sometimes she seems to be signing. But no one in the room knows what she's saying, if anything.

Pattie Burnham

You want to tell us something.

Nancy Updike

Pattie is right up close talking to Lori, watching her face. It's something I saw the nurses do with Asa, too-- get right up close and talk to him and watch his face, even after he seemed to have stopped responding. Because sometimes, suddenly, he would respond, especially to direct questions, like are you in pain?

Pattie Burnham

Are you having pain?

Nancy Updike

Lori gives a small shake of her head and says, no.

Lori

No.

Pattie Burnham

Oh, good. Oh, I'm glad to hear that.

Lori

[MOANING]

Pattie Burnham

Yeah. Do you have to pee? I'm thinking of putting a catheter in to help you pee.

Lori

[MOANING]

Pattie Burnham

Yeah, I think it's probably bothering her. She hasn't peed. Yeah, I'm going to do that, OK?

Nancy Updike

Pattie and Christiana, one of the hospice aides, put in a catheter and the bag immediately starts filling up. Lori relaxes. The whole family relaxes, or at least they're able to give into their exhaustion. Lori's girlfriend, Karen, finds Pattie in the hall.

Karen

The cancer doctor said that she might-- chances are she might fall asleep and die in her sleep.

Pattie Burnham

That's what I think.

Karen

Because the cancer doctor knew her well, too. He knew she was a toughie, you know?

Pattie Burnham

Mhm. She is a toughie. I think the catheter's really helping her to settle down.

Karen

Good.

Pattie Burnham

OK?

Karen

Yeah. I think I'm going to go home, take a shower, relax as much as I can.

Pattie Burnham

Good. If I see a major change, I will call you.

Karen

OK.

Pattie Burnham

But as I said, sometimes they just sneak away.

Karen

Yeah, I know. I'm not surprised.

Pattie Burnham

Yeah.

Karen

You know?

Pattie Burnham

Yeah.

Karen

You know my number.

Woman

You know, you feel useless.

Nancy Updike

This is the sister of another patient. She came straight from work to be with him and has been here, day and night, for two days. I've been talking to her a lot. I know the strain of this waiting, where nothing is happening and your brain keeps flitting between the giant, existential thing that's going on and the tedious nuts and bolts of just getting through every hour.

Every moment seems full of meaning, and yet not meaningful at all. It's surreal, and it is crazy making.

Nancy Updike

How are you doing?

Woman

I'm exhausted. Yeah, I'm exhausted. I'm just-- it's like, what am I doing? I'm just watching him. Like last night, all he does is like-- I'll tell you what he does. He makes this noise that's like [GROAN] non-stop. So I try to do it with him. Not as loud.

I can not hold it as long as he can. He kept going. I'm like, this kid's not even going to stop to take a breath. Me, I'm like, [PANT]. It's exhausting, and can he can do it.

And you must really think I'm nuts. [LAUGH] There's nothing else to do. It's all-- I don't know what I want to do. I mean, it's not like you can--

Nancy Updike

I'm so sorry.

Woman

Oh, no, don't be sorry. You know what? I'm just sitting here for like-- just sitting. You can't do anything. I'm tired of praying to God. Really, I'm tired.

But I told him I'd stay with him. I mean, even if he doesn't know I'm here or not, I know I'm here.

Nancy Updike

I never knew what anyone was going to say at the Kaplan House. Listening to family members in rooms and in the halls, I got the feeling that their brains were full to the brim with what was happening. And asking them any question tipped all their thoughts out in a rush.

Some people told me the whole story of their family member's diagnosis and treatment up to five minutes ago. I heard one of the doctors say to an 84-year-old woman who was sitting with her dying husband, you know him better than we do. Does he look comfortable to you? The woman responded by telling the entire story of their relationship, starting with, we met when I was 13.

The staff has a name for that kind of answer. It's called life review. They say it happens a lot. And I heard life reviews that were a lot darker than that one. Not every death is the end of a well-lived life.

But all the stories seemed to be trying to tackle the same huge question. How did we get here?

Pattie Burnham

Grief is one thing. But watching somebody die is a whole other thing.

Nancy Updike

Pattie again.

Pattie Burnham

You know, not everybody can sit beside a dying person and hold their hand. I think sometimes it's too much. Nobody wants their loved ones to be alone. I get that. But you could wait here for days and days, and when you go to take that one shower is when the person might die.

Nancy Updike

And sometimes people I've talked to say it's common that the person will die--

Pattie Burnham

Alone.

Nancy Updike

Well, it's almost like they're waiting for everyone to kind of go away. Is that what you found?

Pattie Burnham

We see that over and over and over again. When I first started working there, I'm like, this a bit of mumbo jumbo. [LAUGHS] And it just seemed like, come on. Now I'm repeating the same stuff that I heard people say when I first got there, because I've seen it.

Nancy Updike

You mean that people die when either everyone leaves the room or their spouse or their child or whoever's been there for a long time.

Pattie Burnham

Yeah.

Nancy Updike

They die after that person leaves the room.

Pattie Burnham

Yeah. Or they're comatose and the loved ones keeps saying, he's waiting for his brother to get here on Saturday. They're coming from Florida on Saturday. And I'm, inside, rolling my eyes thinking it's Tuesday. He's going to die on Wednesday or Thursday.

He's not going to be here on Saturday for when his brother arrives from Florida. And then the brother arrives at Logan, shows up at the Kaplan House at 12:30, and the patient dies at 1:00. And they say to me, I told you. He just needed Billy to come from Florida. And it's like, what?

Nancy Updike

Talking to people about whoever they were visiting at the Kaplan always brought up other, earlier losses-- always. One woman who was sitting with her mother told me about how her husband had died suddenly eight years earlier, making her a widow at age 51. A woman whose younger sister was dying said she lost both parents before age 13.

A woman visiting her brother told me about how his daughter had died years ago at only two years old. The woman said her brother was so angry about his daughter's death that he said to her, his sister, "why couldn't it have been one of your effing daughters? You've got two."

It was like a map. This death related to that death over there, linked to this living person here, hidden geography shaping all of our lives.

After I'd been at the Kaplan House for several days, I ran into Larry, the husband of Joanne, the woman Pattie coaxed into getting a shower before going home. Larry was sitting alone in the main common area. I knew it couldn't be good that Joanne was back so soon.

Larry

Well, the doctor was in earlier. Were you there when the doctor said she thought she got like a week or so left?

Nancy Updike

I wasn't there.

Larry

Yeah. I figured if she was closing in on it, like, because of the way I've watch her deteriorate. But when you hear somebody who's used to dealing with this for a living tell you that they think that's what's left, it hits home.

Nancy Updike

I'm so sorry, Larry.

Larry

[SIGH] It's a bitter pill to swallow, but that's life. It goes on no matter what.

Nancy Updike

One of the many ways I've been a smug idiot in my life was by disparaging the use of euphemisms for death and dying. I thought it was weak. Who would do that? By the time Asa was at the end, I had barely been able to utter the words "death" or "dying" for several months. I felt like the thing itself was only manageable if I didn't invoke it.

Pattie told me that one of her strategies for protecting herself at work is never to imagine herself in the place of the dying person or their family members. She tries not to picture her husband or her kids. I remember trying and failing at that.

I think part of my clumsiness around Asa and my mother was my barely-suppressed terror at the thought of my own husband dying. I pictured myself in my mother's place all the time. Every morning before going to her apartment, I pulled out a piece of paper. And I had to read the words on it out loud in order to make it out the door.

"Your husband isn't dying. This is not about you. Your mother needs you. Go to her apartment now." it was my own little serenity prayer. God grant me the wisdom to know the difference between my fear and her reality.

When I heard a woman at the Kaplan House say to her husband, who was dying of colon cancer, something like, we had a really good run until the last few months, didn't we, baby? I had to turn away to go look at a lamp in the corner.

But I think death makes narcissists of us all at one point or another, even the pros. I was walking with a nurse named Kim. She worked in critical care for two-plus decades before changing over to hospice. We had just left one woman's room and were heading down the hall when Kim said, shaking her head--

Kim

She's 51. I'm 52.

Nancy Updike

Kim and everyone else said these are the cases that can be hardest to defend against, the ones where you can't not picture yourself when you look at them. She had another just last week.

Kim

There was one woman I had my age. And she had two boys that were my age.

Nancy Updike

Your sons' ages.

Kim

My sons' ages. And the boys were very attentive. They stayed with her and just lay beside her. It was just really-- it hit me on the way home. You think, oh my gosh, this could be me.

Juliet

It was same age as me, I remember.

Nancy Updike

This is Juliet, one of the CNAs-- certified nursing assistants. She's studying to be a nurse. And she remembered the first time she had a patient her own age.

Juliet

That time I had just turned 39. And I'm like, oh, my god. I actually said, oh, my god. That's my age. Oh, my god. That's me. That's me. That's me.

Nancy Updike

Sometimes they see patients their children's ages. This is Jackie, another nurse.

Jackie

We had a nine-year-old boy that was here. And my daughter, Sarah, was nine years old at the time. And I remember climbing in her bed when I went home. And I just, like, fell asleep in her bed. And she was so mad at me. [LAUGHS]

Because I'm like breathing on her and stealing her covers. And she was so mad. And I remember just waking up and thinking that was the funniest thing in the world, that she was mad. But I needed to do that when I came home that night. I needed to know my nine-year-old's OK.

Nancy Updike

Jackie also told me while I was following her around, throwing out questions--

Jackie

Last year I had my kidney removed, because I had a big tumor in it.

Nancy Updike

Oh, my god.

Jackie

All I could think of was, oh, shit. I'm going to end up at work. [LAUGHS] But if I'm to be anywhere, that's where I wanted to be. And when one of our docs, Dr. Warren, came to see me in the hospital, and I thought, this is it. I'm dying. The hospice doc just walked in the door.

Nancy Updike

And it does happen. A nurse named Rosemary, who's been there for a long time, told me about one of the other long-time nurses, Kathleen.

Rosemary

Went out on medical leave to have her bunions fixed and was diagnosed with ovarian cancer and just had a very rough go of it. Nothing worked. Every treatment she had reactions to.

And finally it was time for Kathleen to come the Kaplan House. And she was determined that she was not going to come in on a stretcher like the other patients, because she was a nurse. So she walked down the hall and greeted everybody on her way down.

But it was really hard for us to take care of one of our own. Because I think we think, well, we're hospice nurses, so we don't get sick. And the first night she came in, and I had her as a patient, and I came out to my med cot, and there was a note.

"Dear Rosemary, could I please have a milligram of Dilaudid for 8 out of 10 pain? I know you're going to think I should have two milligrams, but I only want one milligram. No hurry. Take care of the patients first. And one face cloth and one towel, when you get a chance." And that was just Kathleen.

Nancy Updike

Death and illness, who's here and who's not, how we live with this hanging over us. These are the conversations I've been waiting years to have. Before I left, I got to ask Pattie what it's like to talk with her patients so directly, the way that I was never able to do with Asa.

Pattie Burnham

Patients all the time ask you, is this it? Am I dying? And the first thing I usually do is say, well, you might know better than me. Do you think you're dying? And usually, if it's a dying person, they say yes.

And I'll say, are you nervous? Are you anxious? What are you afraid of?

And if they say I'm afraid I'm going to have pain, we'll just talk about it and say, well, I've got this, this, and this to give you if you have pain. So if you feel a little bit of pain, I want you to tell me. And we'll head off a little problem rather than a big problem.

And they'll say, well, I'm afraid I feel like I won't be able to breathe. Then we talk about that, about the medications I'll give them. And all they have to do is tell me they're short of breath. And they get the medicine.

They're afraid they'll be alone. And I'll say, well, let's talk to your family about that. Or I'll be here. I'll be checking on you.

Nancy Updike

I asked Pattie if anyone, at the end of that list, says, well, I'm just afraid of dying. I fear death. She said yes. And she listens if they want to talk about it, offers to bring in the chaplain or the social worker.

What else is there? That might be the biggest thing that she and the other nurses know that we don't. They know the limits of what they can do.

Ira Glass

Nancy Updike. She's one of the producers of our show. This was her mom and Asa's song.

[MUSIC - "FOREVER AND EVER AMEN" BY RANDY TRAVIS]

Coming up, since the federal government can no longer count on cartoon characters to bring in our tax dollars, as they once did, what is left for them? My answer is in a minute, from Chicago Public Radio and Public Radio International, when our program continues.

Act Two. Taxes.

Ira Glass

It's This American Life. I'm Ira Glass. Each week on our program, of course, we choose a theme. Today's program, "Death and Taxes," stories about the inevitable. Stories where people who know about these things share their inside knowledge with us. In Act One, we heard all about death.

We have now arrived at Act Two, which is about taxes. I think most of us think of taxes as inevitable, like death. But in fact, while we all die, we do not all pay our taxes. According to the most recent statistics, the IRS only successfully collects 85% of the money that all of us owe.

Which is a lot of money. They miss $385 billion out of $2.6 trillion they should be collecting. And when you think about it, what is amazing is how many of us actually do pay. There are entire countries where it seems like most people are cheating. Greece, I'm looking at you.

Here, we pay up-- most of us-- because of some combination of A, we think we don't have a choice. Though if you'd bother to look into it, you would learn that the IRS does not have that many people checking in on us. And B, we think it's the right thing to do.

NPR's David Kestenbaum has this story about how we got here and about one former IRS special agent trying, even in retirement, to help Uncle Sam in this quest.

David Kestenbaum

The first year the government tried to collect an income tax from broad swaths of Americans was during World War II. And really, it was unclear how well it was going to work. One poll showed that one third to one half of people weren't sure what they were supposed to do.

And the government faced this choice. There were basically two options. The government could play tough, say, this is the law. You have to pay. It could scare people, or it could try to inspire people to pay their taxes.

We went with inspire. We chose a spokesperson who could sell the income tax, someone with credibility, someone who is instantly recognizable and easy to understand.

Donald Duck

That is [INAUDIBLE].

David Kestenbaum

We went with Donald Duck. This is a short film by Disney from 1942, commissioned by the government. In it, Donald Duck is marching around his house patriotically, listening to the radio and talking back to it.

Man On Radio

Your country needs you.

Donald Duck

OK!

David Kestenbaum

Donald Duck runs and gets a gun and a sword and an axe and boxing gloves.

Man On Radio

Are you a patriotic American?

Donald Duck

Yes, sir.

Man On Radio

Eager to do your part?

Donald Duck

Yes, sir!

Man On Radio

Then there's something important you can do.

Donald Duck

Oh boy, oh boy, oh boy. I'll do it.

Man On Radio

You won't get a medal for doing it.

Donald Duck

Oh, that's all right.

Man On Radio

It may mean a sacrifice on your part.

Donald Duck

I'll do it anyway!

Man On Radio

But it will be a vital help to your country in this hour of need. Shall I tell you what it is?

Donald Duck

Yes! What is it? Tell me!

Man On Radio

Shall I?

Donald Duck

Tell me what it is.

Man On Radio

Your income tax.

Donald Duck

Income tax?

Man On Radio

Yes, your income tax.

Donald Duck

[MOANS] Income tax.

David Kestenbaum

They walk him through filing his whole tax return.

Man On Radio

You made less than $3,000 last year?

Donald Duck

Yes, sir.

Man On Radio

Well, then you can use the new, simplified form.

David Kestenbaum

Donald Duck writes in occupation-- actor. Income-- $2,501. He lists his dependents, three-- Huey, Dewey, and Louie

Donald Duck

Huey, Dewey, and Louie.

David Kestenbaum

They have him look up how much he owes in the tax tables.

Donald Duck

Oh, I owe just about--

David Kestenbaum

This film was nominated for an Academy Award. And remarkably, this approach worked. Millions of Americans became responsible income taxpayers for the first time.

Of course, when you're fighting the Nazis and you've got Donald Duck making the pitch, it's an easy sell. During the war, almost 90% of Americans polled said their taxes were fair. After the war, that plunged to around 60%.

These days, some of us aren't so convinced of our duty. A recent survey by the IRS showed something like 1 in 10 people felt it was OK to cheat a little here and there or as much as possible on their taxes. This is the tax-paying world that Al Drucker discovered when we started working for the IRS in 1981.

He'd just graduated from John Jay College of Criminal Justice. And he was hoping to land a job at the FBI, or maybe the DEA, chasing drug traffickers. But the way things worked is you just took this general aptitude test. And you waited to see who called. And the call he got was from the IRS.

Al Drucker

Was it my peak choice? No. If I was in that recruiting forum and there were 20 booths and one was DEA and one was IRS, I'd probably go to the IRS last.

David Kestenbaum

Al didn't really even know the IRS hired law enforcement people. But he took the job. They trained him to shoot a gun. They taught him special driving pursuit skills. And they gave him an impressive-looking badge that said "Special Agent Number 4158" with the seal of the US Treasury on it. And he got to work.

One of Al's first cases came from a tip. It was a tip about a guy who ran a pharmacy in New Jersey. Someone had told the IRS, hey, you should check this guy out. I'm pretty sure he's cheating on his taxes. So Al, with a colleague, went to the pharmacy.

Al Drucker

And it was an old-fashioned type pharmacy, a regular prescription-bearing pharmacy that would sell newspapers and gum and any of the stationary and cards, greeting cards and things of this nature.

David Kestenbaum

Even in retirement, Al still speaks like a cop. Things of this nature, the suspect, the informant. Anyway, Al and his partner walk into the pharmacy. And the pharmacist is there. And they get the strangest reception.

Al Drucker

Believe it or not, he looked at my partner and myself, and he looked at us, and he said, you guys are with the IRS, aren't you? As if he was expecting a visit.

David Kestenbaum

Which, of course, he might have been. Someone, after all, had ratted them out. That was why Al was looking into this guy. And it was probably someone the pharmacist knew pretty well.

Al Drucker

It may be an employee. Sometimes an employee will brag about, when they're fired, turning the boss in, et cetera, et cetera.

David Kestenbaum

The insider tip. It was a powerful thing. Al looked into the pharmacist's bank records and pretty quickly found something fishy. The guy didn't seem to be depositing any cash. All the money came from checks and credit cards. And clearly, people had been buying gum and newspapers and greeting cars with cash. Where was all the cash going?

Al Drucker

We were able to establish that there was another secret bank account where the cash was going.

David Kestenbaum

Where was the secret bank account?

Al Drucker

Just a different bank than he typically used.

David Kestenbaum

Oh, it wasn't like--

Al Drucker

No, it wasn't offshore. It wasn't-- no.

David Kestenbaum

It was around the corner.

Al Drucker

It was a neighboring town. And it was a different bank than he typically would use.

David Kestenbaum

Was it in his real name?

Al Drucker

It was in his real name.

David Kestenbaum

[LAUGHS] It's just amazing how simple it is. Basically, a secret bank account was a bank account, his name, one town over. And when he got paid in cash at the pharmacy, he just deposited it there and never declared it.

Al Drucker

There's no question. I think a lot of times, it's not nearly as complex as you might think.

David Kestenbaum

A lot of cases are like that, he says. The fraud is right there once you start looking. But you need a reason to start looking. In this case, it was the tip that gave them that reason.

Tip, of course, is a nice word for it, ratting out is another. But this notion that good ideas could come from people telling on each other, it stuck with Al. So a couple years ago, when he retired from the IRS, he set up a business built around this idea, that people could help the government do its job collecting taxes by volunteering information. And here, for once, he did not give it a cop-speak name.

Al Drucker

Taxsqueal.com

David Kestenbaum

It's not subtle. He went straight to squeal.

Al Drucker

Those are the two words that best connote what I was trying to say, which is taxes and squealing. It could have been Tax Rat. And we experimented plenty with the Tax Rat, believe me.

David Kestenbaum

I suppose Tax Rat you could have had a rat on the site. Tax Squeal, you could have a pig.

Al Drucker

Well, if I could be honest, the name was taken.

David Kestenbaum

The IRS does have a way you can rat or squeal on other people. But like all things IRS, it's a pain.

Automated Voice

Welcome to the Internal Revenue Service Tax Fraud Referral Hotline.

David Kestenbaum

There is a hotline. But if you call, you get this.

Automated Voice

You can report tax fraud and abuse by completing form 3949-A or by sending us a letter.

David Kestenbaum

Of course, there's a form. You have to print it out, fill it out, and actually put it in an envelope and mail it to the IRS in Fresno. Taxsqueal.com, Al says, removes the hassle and provides an extra layer of anonymity. You just go to the website, type in some answers-- basically, who are you squealing on, where does the person live, what did they do, and that's it. Al will file the form for you for free.

Al works out of the back of a store his wife runs in a New Jersey strip mall. The store is a little hard to describe. One side, literally one side of it, is devoted to sports memorabilia-- jerseys, photos, baseball cards. The other side is window treatments.

Al Drucker

You have a blind that goes up, a blind that goes down, and certainly a blind that tilts.

David Kestenbaum

Making this, I think, the only store in America where you can buy baseball cards and window shades and squeal on your neighbor. Al works at a desk in back with his old badge, now preserved in the Lucite block, and some squeals he's printed out. When enough of them pile up, he mails them to the IRS.

Al says the IRS, despite what you might think, it's not all-powerful. When he worked there, the IRS had only around 3,000 field agents doing criminal investigations. They are massively outmatched.

So the IRS faces this fundamental problem. How do you find the cheaters? Al's answer, rat them out, it may sound sort of unpleasant. But it turns out, this is one of the oldest tricks we've got.

During the Civil War, we had an income tax the rich for a while. And the government made it so that you could see exactly how much everyone was paying. The idea was that neighbors could rat out the guy next door if he lived on a big estate and didn't seem to be paying much. Squealing was the original form of tax enforcement.

The IRS today has a whistle-blower program where they reward people for turning in big fish. Last year, the program paid out $53 million in awards. For smaller squeals, you can print out that form, fill it out, mail it in. Or there's Taxsqueal.com.

Al Drucker

Let's see how this goes. Let's see what's come in recently.

David Kestenbaum

Al reads through some of the stuff he's gotten through his website. There's someone squealing on Jai-alai gamblers in Florida. There's a retired sheriff ratting out a hair salon. There's one angry one in all caps. And a woman saying her ex-husband is claiming the kids as dependents when she's supposed to be.

Actually, Al says. There are a lot of exes-- ex-wives, ex-friends, ex-employees.

Al Drucker

Dr. so-and-so had a dental office installed in the farm in Ohio and would routinely work on Amish and Mennonite patients on the weekends and off-days. And those patients pay fully in cash. He would then not include those transactions as part of the regular business income. He would also trade and barter for services and not share those with his staff who was paid on commission.

David Kestenbaum

Al doesn't check the validity of these allegations. He doesn't look into them at all. He just prints them out and mails them in.

But, but if you want to pay just $2, Al does offer one extra service. For $2, All will mail a little postcard to the person you've squealed on. Postcard is yellow with big black letters that read "You've been squealed on," exclamation point. On the back is a legal disclaimer saying Tax Squeal is not a government entity and explaining the Tax Squeal mission. He shows one to me and producer Chana Joffe-Walt.

Al Drucker

We have these nifty little postcards that say, you've been squealed on. And this will get mailed out.

Chana Joffe

It's like a little extra screw you.

Al Drucker

[SIGH] Yes. It is. But it gives people another opportunity to get this information forward.

Chana Joffe

And it's a way to really scare somebody who's not paying their taxes.

Al Drucker

If they haven't, that's exactly right. If you have, than it's not an issue.

Chana Joffe

No, I think that would scare me even if I had paid my taxes.

Al Drucker

Maybe. Maybe.

Chana Joffe

You don't think so? You don't think anybody who gets that is freaked out by it, even if they're completely compliant?

Al Drucker

Yeah, I guess you would be frightened. I guess you would be frightened. I don't look at it that way. But yeah, the average person would probably be frightened.

David Kestenbaum

So what do you think about that?

Al Drucker

I think if you've done what you should do, you don't worry about it. If you haven't, well, you have the possibility of cleaning up your act before somebody comes knocking on your door.

David Kestenbaum

Honestly, I was conflicted about all this. It felt kind of wrong, but I can't say why. Maybe's it's that if you turn someone in, you worry that bad things are going to happen to them.

One time I was in this little corner grocery store and I saw this woman shoplifting. And I went back and forth about whether I should say something. In the end, I did, but my heart was pounding. And as I left, I heard the store owner confronting her. And I just felt awful.

Squealing, it doesn't feel like something to be proud of. And Al, even Al, he's got complicated feelings about it.

David Kestenbaum

How do you feel about squealing?

Al Drucker

Well, if you feel strongly enough about a certain situation, I think you should report it. It's as simple as that. My own personal belief, would I do it? No.

David Kestenbaum

You wouldn't use your own website?

Al Drucker

I would be-- no. I wouldn't do it. I just wouldn't do it. Because I don't think-- I just wouldn't do it.

David Kestenbaum

Why?

Al Drucker

It's just not my nature to do those kind of things.

David Kestenbaum

Because it feels wrong to you to turn them in?

Al Drucker

No, it's just not something I would do. It's not wrong or right.

David Kestenbaum

No, it's got to be right. It's got to be right to turn them in. They're doing something wrong.

Al Drucker

It just-- it really depends. It depends on the situation. I would have to be directly affected before I would do something like that. I wouldn't do it. I'd sooner approach the person before I did this. The anonymous feature makes it very suspect.

David Kestenbaum

You're allowing people to do this thing that you yourself wouldn't do.

Al Drucker

I'm giving the ability to do it. Doesn't mean I choose to do it, right?

David Kestenbaum

Al's Tax Squeal business is not going as well as he'd hoped. The tax attorneys he thought would pay to advertise on the website, they didn't really materialize. And that $2 "you've been squealed on" postcard service, most people don't do it.

Most people, it turns out, are like Al. They don't want to squeal. Sure, there are lots of vindictive ex-employees and ex-spouses out there eager to squeal, just maybe not enough to support a business. Al says the postage alone is killing him.

Ira Glass

David Kestenbaum. Normally, you can hear him on NPR's Planet Money. Their absolutely free, deeply informative, and entertaining podcast is at NPR.org/money.

Credits.

Ira Glass

Well, our program was produced today by Chana Joffe-Walt, with Alex Blumberg, Ben Calhoun, Sean Cole, Stephanie Foo, Sarah Koenig, Miki Meek, Jonathan Menjivar, Brian Reed, Robin Semien, Alissa Shipp, and Nancy Updike. Our senior producer is Julie Snyder. Production help from Alison Davis.

Seth Lind is our operations director. Emily Condon is our production manager. Elise Bergerson's our administrative assistant. Adrianne Mathiowetz runs our website.

Research help from Michelle Harris and Julie Beer. Music help today from Damien Graef.

[ACKNOWLEDGEMENTS]

Our website, ThisAmericanLife.org. This American Life is distributed by Public Radio International. Thanks as always to our programs co-founder, Mr. Torey Malatia. You know, he just joined a new health club, and they have a sauna. And he can not shut up about how great it's going to be when I join.

Boy

You're going to smell more bad. You're going to sweat. Sweating more, like a lot more. Like getting really smelly. Sweating like a moose.

Ira Glass

I'm Ira Glass. Back next week with more stories of This American Life.

Announcer

PRI, Public Radio International.