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Medical Care at the End of Life

Journalist Stephen Kiernan's new book is Last Rights: Rescuing the End of Life from the Medical System. Kiernan writes that doctors are not well-trained in end of life procedures, and that half of those who die in hospitals suffer untreated pain, while those in nursing homes risk abuse and personal bankruptcy. Based in New England, Kiernan has written for the Boston Globe, the Burlington Free Press and other publications. He received the George Polk Award for medical reporting and the Joseph Breckner Center's Freedom of Information Award.

16:55

Other segments from the episode on December 4, 2006

Fresh Air with Terry Gross, December 4, 2006: Interview with Tomothy Egan; Interview with Stephen Kiernan.

Transcript

DATE December 4, 2006 ACCOUNT NUMBER N/A
TIME 12:00 Noon-1:00 PM AUDIENCE N/A
NETWORK NPR
PROGRAM Fresh Air

Interview: Timothy Egan, winner of National Book Award for
nonfiction for his book "The Worst Hard Time," talks about the
dust storms in the 1930s
TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

My guest, Timothy Egan, won the National Book Award for nonfiction last month
for his book about the Dust Bowl called "The Worst Hard Time." They were
called dust storms but they were really storms which blew enormous clouds of
topsoil through the air, as much as 300,000 tons in one day, blackening the
skies and making it impossible to breathe. The dirt was swept up by the wind
as the result of misguided agricultural policies, bad environmental practices
and a long drought. More than a quarter of a million people fled the Dust
Bowl in the 1930s. Egan's book is about the people who stayed and endured the
storms, witnessing its consequences. Egan writes that at its peak, the Dust
Bowl covered 100 million acres of the Great Plains. The epicenter included
parts of Texas, Oklahoma, New Mexico, Colorado, Nebraska and Kansas. One
hundred million acres of grassland, an area roughly the size of Pennsylvania
was destroyed by the dust storms.

Timothy Egan, welcome back to FRESH AIR and congratulations on the National
Book Award. And I have to say my reaction to reading your book was how come I
never paid more attention to this story. It is such an interesting and
important part of American history, and it's so kind of relevant to things
today. So let me start by asking you to say what--to describe what the dust
storms looked like.

Mr. TIMOTHY EGAN: What the dust storms were like in the 1930s when they
reached their peak, particularly on days like Black Sunday, which was the
worst storm of all time, people would describe it as a moving mountain range.
You'd look off and you'd see, you know, 20, 30, 40, 50 miles off on the
horizon this thing that was 100 miles, 200 miles long, perhaps five--some of
them topped out at 10,000 feet high. So that's higher than most mountains in
all the East Coast, and it's moving, so you see this thing from the distance,
and then it gradually approaches you, and as it gets closer, all kinds of
strange things happen. Static electricity increases, birds start to screech
and flee, and then when one of the storms finally hits, frequently, it would
go as dark as midnight. It would go completely black, and people would say
time and again, they could not see their hand when this mountain of movable
dust was upon them.

GROSS: And what was in the dust?

Mr. EGAN: Well, these are really fine particles and that's why so many
people died of something called "dust pneumonia." It was a unique term that
was--it was a term unique to this period. A kid would be sitting in class one
day, and then a few days later he'd be missing from class and then his parents
would--they'd have him in one of this triage hospitals and they'd find out he
was coughing up his lungs, and the kid would eventually die of what they
called dust pneumonia. But basically what were in these storms, and let me
just give you one comparison here. A single storm, Black Sunday, which I
mentioned, April 14, 1935, that storm carried as much dirt in that day as was
dug out of the Panama Canal over seven years. So you know, the volume you're
talking about is just extraordinary. There was an earlier storm that
stretched for 1400 miles. This was a storm in 1934 that covered New York
City, Washington, DC, and sent dust out to ships at sea, so--and what was in
these storms was basically the prairie--what was left of the prairie topsoil
of the southern Great Plains. So it was carrying the sort of calcified
remains of the southern Great Plains, what had been the greatest grassland in
the world.

GROSS: For your book, you found people who survived the dust storms and
stayed in the Dust Bowl. They didn't flee. Are there many survivors left?

Mr. EGAN: Well, because John Steinbeck's book "The Grapes of Wrath" is so
iconic. I mean, every kid in middle school reads it now, there have been so
many plays, there have been terrific Hollywood versions of it. It's really
well-known abroad as well. "The Grapes of Wrath" seems to define the Dust
Bowl but, in a larger sense, it does not because Steinbeck wrote entirely
about the people who left, those so-called Okies and Arkies, and most of those
people weren't from where the dust storms were. They were tenant farmers from
further East, and they were being run out because they didn't own the land,
there was nothing for them to do.

The people at the heart of the Dust Bowl, they owned their little piece of
dirt so they stuck around, and two thirds of them, Terry, two thirds of them
in the epicenter of the Dust Bowl, which is about a five-state region covering
an area of about 100 million acres, two thirds of those people did not go.
Now, their story's almost gone. These people are in their upper 80s, their
mid-90s. They're frail and in nursing homes, and a lot of them still live in
these homesteads, these mummified homesteads, and they have these memories and
they have these diaries and they have these pictures, and you go into their
house and you talk with them, and then you have one of these magical moments
when they go back and get the shoe box, and the shoe box holds letters and
pictures and things that tell the story.

So they are still with us, barely, and they just have an amazing story to
tell, and that was my challenge was to try and sort of be the bridge from
their story to a more modern audience.

GROSS: Would you tell us one of the stories that you learned, about what it
was like to live through the storm? Where would they take shelter? What
would they do to try to prevent themselves from breathing in all of the dust?

Mr. EGAN: There was one storm in town called--it looks like it's Boise City
but it's actually pronounced Bose City, the way they pronounce it, and that's
in the Oklahoma Panhandle area that was known for about 50 years--it was
formally known, stamped on the map, as No Man's Land. It was arguably the
last place in the contiguous United States to be settled, and almost overnight
at the start of the 20th century, these towns, you know, propped up and people
homesteaded there because it was the last place you could get a large piece of
dirt for basically for nothing. So they had a prosperous time, and so when
the storm started to come, they had a horrific time, and during these storms,
they didn't know how to behave because there was no institutional memory,
there was no one that could say, `Well, when this happens, go into the
cellar.' So everyone sort of adapted. The main thing starting was you
wouldn't touch another human being because the static electricity was so
great.

And there was a storm in '34, I remember someone described this to me, this
man went outside to look for his little girl just as he could see the cloud
moving in, the cloud--the big dust storm, and then it hit and everything went
black and he lost sight of his little girl, and he hit the ground and he said
there was about six to 12 inches of breathable air on the ground and
everything above him was black and swirling dirt, sort of this abrasive--they
always said it felt like sandpaper on the skin. He crawled along the ground
for about 20 minutes until he found his house. He crawled in this sort of
crawlspace of six to eight inches of house until he found his house, and he
stumbled inside and then he thought he'd lost his little girl. Well, it was
about a day later when he found her. She had been no more than a quarter of a
mile away, and she had huddled in a corner in the barn, but people used to
actually wear--I heard this from so many people, they would wear these little
lifelines. They would attach a rope to themselves sometimes, before going out
into a barn when a storm was approaching. It was like being in space so you'd
have at least a tether to the place you're attached to.

GROSS: So, did the child survive?

Mr. EGAN: The child did survive, but on Black Sunday there was a similar
incident that happened outside Elkhart, Kansas, where a child was lost and the
parents went and gathered their neighbors in the middle of the storm and they
looked and they looked and they looked and they didn't find them, and the next
morning, they did find the child. The child had died, had suffocated to
death, and the child was only about 800 yards from his home. That was in
Elkhart, Kansas.

GROSS: Did you hear a lot of stories like that?

Mr. EGAN: You did. And that's why they--they were so afraid. Again, I
mean, they didn't know what was going on. Life could be snuffed out. The
dust pneumonia part of it in some ways, they were more afraid of that than the
storm, because the storm was this big brute thing, you could see it coming,
and you could dampen down your windows and go lay down and wait for it to pass
over the house, but the dust pneumonia thing came like a tap of death on the
shoulders. There's a detail that I describe in the book where a young man, 17
or 18 years old goes in to see a doctor. He's a strapping farmhand-type and
he starts coughing up all this dirt. He goes in to see a doctor, and the
doctor looks inside of him, and I'll never forget this, he said, `Young man,
you are just filled up with dirt,' and the kid died two days later.

GROSS: There are journals that you reprint in your book that describe face
masks and putting Vaseline around your nose and, you know, rashes that
developed. Give us a sense of like the homemade medical precautions that
people tried to use.

Mr. EGAN: The most common thing that people did, and this was almost
universal to people living in the southern Plains, and I still get it in the
letters that I get from people now who say, `Oh, thank you for telling this
story. I remember doing exactly that.' You wouldn't leave the house without
putting Vaseline in your nose. They thought that was a way to sort of trap
the particles from going any further or with a mask. They would wear anything
from a rag to just kind of a surgical mask. People wore goggles as well.
They--your skin would get incredibly irritated because I described it earlier
as being like sandpaper, so a lot of people broke out in rashes.

And then, OK, that's leaving the house, then you get in your car and you go to
drive somewhere. Most people would have a chain that they dragged underneath
their car so that the static electricity, when one of these storms hit, would
be channeled through the car and down to the ground. It would essentially
ground the electricity. And if you didn't--what the chain did was it kicked
up more dust so it actually made it worst, but it did ground the electricity.

GROSS: You know, when you describe how bad the static electricity was, I
mean, you said you wouldn't even touch another person, is that because you'd
get a shock or you'd get electrocuted? I mean, what are we talking about?

Mr. EGAN: No, you'd get a shock, but it was a very strong shock. The first
time, when I was initially into the research here, this old man told me about,
you know, you just wouldn't shake anyone's hand sometimes when a storm was
approaching, and I said, `Come on,' it just sounded apocryphal to me like a
lot of these stories. They sounded apocryphal. People always say, `Oh, that
was the worst ever' or `You should have been'--`When I was a kid I walked in
the snowstorm 20 miles to school,' but you hear it enough to realize it was
true. And what happened when the static started to crackle through, it was
just a really strong shock, and it could knock you back.

GROSS: My guest is Timothy Egan. His book about the Dust Bowl is called "The
Worst Hard Time." Egan covers the West for The New York Times.

We'll talk more after a break. This is FRESH AIR.

(Announcements)

GROSS: My guest is Timothy Egan, and he covers the West for The New York
Times. His latest book, "The Worst Hard Time: The Untold Story of Those Who
Survived the Great American Dust Bowl," won a National Book Award for
nonfiction in November.

It took a while for scientists and other experts to figure out what was
causing these dust storms. There was a 1936 report to President Roosevelt
from the Great Plains Drought Area Committee, and this committee blamed the
dust storms on, quote, "an attempt to impose upon the region a system of
agriculture to which the Plains are not adapted." The Plains had been Indian
territory where buffalo roamed, and after the Indians were defeated, the
buffalo were basically killed to make room for cattle. Would you tell us that
story?

Mr. EGAN: Yeah, it's an amazing story. Also that report is incredible
because it was a huge--it was real big deal for these people to basically
blame it on government policy and homesteading, the sacred Homestead Act,
which was the key to Jeffersonian agrarian democracy, the ever-westward
movement, free land, and they said, `All of that was at the root of it. We
never should have farmed this grassland.' But it's interesting to look at the
land itself, and that's why I see this story, Terry, in some ways as a fable.
It's a natural world fable. You start with the greatest grassland in the
world. It evolved over eons. I mean, you have this wonderful, waist-high,
blue stem--you'd see it as--I described it as, when the wind was blowing on it
like seeing music over the grass, and then you had this tough resilient
buffalo grass, which was much shorter, and this stuff could survive drought
and wildfire and incredible extremes of temperatures--120 in the summer on the
ground. The ground was actually hotter than that, 137 in some places or 20,
30 below, but that grassland nurtured bison, and because you had bison, you
eventually had people living there. So you had a number of tribes lived
fairly well--nomadically, but fairly well on the bison that fed off this
grass. In about 30 years time, we erased the entire thing. We got rid of all
the native people, and then we got rid of all the bison. Now that's sort of
an old story. So at the start of the 20th century, 1900, the US Census took a
count of the upper Texas Panhandle, about 25 counties, and you know how many
people they found living there after clearing out all the bison, clearing all
the native people, at the start of the 20th century?

GROSS: How many?

Mr. EGAN: Zero.

GROSS: Wow!

Mr. EGAN: It had been completely swept clean, and they said, `So what do we
do with this? What do we do with this?' What they did was they enlarged the
Homestead Act so it made it twice as much land that you could get for free.
The railroads encouraged people to come out there and they brought cattle to
the land, and cattle were not really suited for it because they're not good
thermal regulators like bison. They die in droughts and in really cold
periods. Also, and this happened a little later, they decided to plant wheat
there, and that was the biggest mistake of all.

GROSS: Why was planting wheat such a big mistake?

Mr. EGAN: Well, because they overturned the grass. What had held this
ground in place was the sod, and even in the driest of years, the sod had this
deep-root structure so the prairie would not blow. It was held in place. And
what they did is they overturned this sod. They went really deep, a foot into
the ground and overturned it. This is called dry-land farming. It doesn't
involve any irrigation. You turn over the ground. You put the seed into it.
You hope that there's good rains in the spring, and then you harvest in the
summer. When these droughts did come, as they often did, the wheat never
grew, and so it was never harvested, so the land then started to blow. There
was nothing to hold it in place.

Also, at the same time, there was a convergence of a commodity thing. The
wheat had crashed after running up in price. There was this huge spike, it
crashed. It went from like $2 a bushel to a dollar a bushel to 50 cents to a
dime to nothing. So people were getting nothing, and they thought, you know,
`In order to get something, I at least have to plow twice of what I did and
maybe I can cover my bank note.' So there was there convergence of things, you
know, planting wheat in what had been grassland, then the drought comes. The
land is not held in place, and then this economic crash, which meant there was
this last great frenzy to turn it over one more time, and it all came
together, starting around 1931.

GROSS: Well, before the Depression and the drought, the government was really
trying to sell the idea of homesteading, of making it tempting, alluring...

Mr. EGAN: Yeah.

GROSS: ...you know, to bring people out to the Plains. Were people sold a
false bill of goods?

Mr. EGAN: I think they were, and I think the government knows that. Some of
that was in that 1936 report. It's amazing to think that something like that
could ever be written now about Hurricane Katrina or any of the other
so-called natural disasters.

By the way, one of the points of that report was that this was not a natural
disaster. That the Dust Bowl was a man-caused disaster. Now here's why I
have trouble, Terry, though saying--blaming the people who settled there, and
you're nice to not blame them, to say they were sold a bill of goods. The
people who came here at the start of the 20th century, the last great and
biggest homesteading rush of all times, as it turns out, this is--more people
homesteaded at the start of the 20th century than had homesteaded before. I
called them the `last chancers,' and they're just a fascinating group of
folks. You had Mexicans, who sort of always lived there when this land used
to belong to part of Mexico. You had a handful of native people, mostly
so-called half-breeds, and native people were officially removed from there
and they were not citizens, but some of them still lived in the shadows and
they had a little bit of knowledge of this, and then you had these Germans
from Russia who had been promised that they wouldn't have to be drafted, they
wouldn't be taxed, and they could homestead in Russia. That lasted for 150
years, then when it was taken away, they moved in mass to the southern Plains
and recreated exactly what they had on the Volga region in Russia. And then
you also had people from the old Confederacy, so-called poor white trash or
Scots Irish who were landless after the Civil War and were sort of adrift
across the continent, and they came there as well. So you had all these
groups of folks--I even found some Jewish families as well who moved through
there and acted as merchants. All these groups of folks who moved into this
blank slate, this tabula rasa, this land that had been utterly erased of its
original self and character. Suddenly, you had this frenzy--town-building
frenzy, started the 20th century, and they did pretty well, and it was a
pretty good thing. I mean, it was like, my God, here's the American dream.
These people went from living in these sod houses, from living in these
dugouts, which was basically a hole in the ground. I mean, it's amazing to
think in the 20th century that Americans lived in basically, you know,
coffin-like holes in the ground, you know, these dugouts. You dig a space in
the ground and the top part would be about four feet above ground and then
they built frame houses and then they prospered, so for a while, it looked
like the whole thing was really going to work.

GROSS: Until the drought.

Mr. EGAN: Yeah. This--in the twenties--until the drought and the collapse
of wheat prices, too.

GROSS: Mm-hmm. Mm-hmm.

Mr. EGAN: Wheat prices to this day have never recovered from what they were
in the 19--in the teens, just after World War I. So it was two things again.
Suddenly, it was a gold rush for wheat, and then, you know, the prices really
went up, and then the drought came as well. And the drought did--it just
asserted the natural character of the southern Plains. During the good years,
it was wet, so they could actually make a go of it.

GROSS: So when you went to the area that had been destroyed by the dust
storms, what remnants of those storms could you still see, of the storms and
their impact?

Mr. EGAN: Boy, I'll tell you, it's really haunting and really sad for two
reasons. I mean, one is you still see, especially in southern Colorado and
the panhandle of Oklahoma, the so-called No Man's Land, you still see the
drifts. I talk about in the book seeing these fence posts, the nubs of fence
posts, barely poking above ground. Now these are 12-foot-high cedar posts,
and what you see when you drive along these little one-lane roads are about
two feet or a foot of the post above the ground. The other 10 feet are
completely buried in dust. And then you see all these abandoned homesteads
and you see schools. And you'll see the--I describe this in the book--all
that's left is the chimney in an old one-room schoolhouse. What's truly
haunting is to go to the towns that are trying to hold on. These are towns
that America has passed by. I mean, the Great Plains has been emptying of its
peoples for 80 years, since the dust storms. They've never recovered, and
they're in an accelerated death spiral right now because there's truly
nothing--they haven't found their place in the global economy. So town after
town after town in the western and southern Plains, they're just trying to
hold on.

GROSS: Are there still dust storms in that area?

Mr. EGAN: There are, and I've gotten quite a few letters from people, and
they'll describe latter-day storms. There were some storms in the '50s, and I
ran into a bunch of them when I was down there, but they're nothing. They
don't even approach the level of the storms that we had in the 1930s.

GROSS: Timothy Egan's book about the Dust Bowl is called "The Worst Hard
Time." He covers the West for The New York Times. He'll be back in the second
half of the show.

I'm Terry Gross, and this is FRESH AIR.

(Soundbite of music)

(Announcements)

GROSS: This is FRESH AIR.

I'm Terry Gross, back with Timothy Egan. He won this year's National Book
Award for nonfiction for his book, "The Worst Hard Time: The Untold Story of
Those Who Survived the Great American Dust Bowl." During the dust storms of
the 1930s, the winds blew mountainous clouds of topsoil across the Great
Plains.

What are some of the policies that remain in place from the Dust Bowl era?

Mr. EGAN: Well, the lasting--they say the most--the lasting, the greatest
legacy of the Dust Bowl, the grass-roots legacy of the Dust Bowl is the Soil
Conservation Service, which was started by big Hugh Bennett, a man of the
South, a son of a cotton farmer from the Carolinas, and you still see soil
conservation districts all over the West and Great Plains. And the idea there
was to get people to knit together and to look at the land as a whole, rather
than your square mile against another person's square mile. To look at the
entire ecosystem and to say, `OK, if you're doing this over here, it's going
to blow on my land. Let's look at this thing as a region. Let's look at this
thing as a bioregion.' So that's been real interesting.

I'll tell you one quick story about how that happened. Bennett was trying to
convince the Congress to start the Soil Conservation Service, which like the
National Parks is one thing the United States gave the world. There are now
soil conservation districts all over the world. So he's arguing with
Congress, and people are saying, `Oh, we gave the Dust Bowl victims enough.
These people, what do they know?' The thing I mentioned earlier, they're
making fun of them. And Black Sunday has already happened. The worst storm
in the Dust Bowl period, and it's blowing east the residue of Black Sunday.
So Bennett's going on and on, and his aide comes up to him and says, `Keep it
up,' you know, `the residue of Black Sunday's about 100 miles away.' So he
basically goes into this filibuster and starts, you know, telling longer
stories. This guy was a great speaker. He could, you know, do these farmer's
daughter jokes off the tip of his tongue. He goes on and on and on. Finally,
3:00 in the afternoon, I think it was a Wednesday in Washington, he says,
`There it is, gentlemen. That's what I'm talking about.' And they look
outside and it's dark and the residue of one of these storms is blowing over
and covering Washington, D.C. He goes, `There! That's what I'm talking
about. There goes part of Oklahoma.' Well, that day, the Congress created the
Soil Conservation Service, FDR signed it, and it's the lasting legacy of the
new deal. Now, whether it worked or not is another question.

GROSS: Do you think much about global warming when you think about the Dust
Bowl, and I ask that only because the Dust Bowl is, you know, as the 1936
report to FDR described it, it was a manmade disaster. It was manmade
policies about what to do with the land that created this natural catastrophe,
and do you fear that like something similar is happening with global warming,
that there's some kind of like natural disaster in the happening--you know, in
the making because of manmade policies and manmade actions.

Mr. EGAN: As I said earlier, this story is a fable. It's what happens--it's
a story of hubris, and it's a story of human hubris against the land, and the
story of what happens when you push things, what happens when you don't listen
to what the land, the earth, is telling you in its simplest form. And I think
that's why a lot of people have responded to this. But I have to say, Terry,
you know, I'm generally an optimist. I'm like not black Irish, I'm sunny
Irish, I guess. I'm the guy on St. Patrick's Day telling the joke. I don't
think we've learned much from this. I don't--I mean, the Dust Bowl's largely
forgotten. You know, everyone said, `Never again,' and then it was largely
forgotten, and we're pumping deep into the Ogallala Aquifer, and some people
say it lose a lot of its water within 10 to 20 years, and on global warming,
you have a really minor scale model of that in the Dust Bowl. Here's what
happens when you don't listen to the trends that are out there. Here's what
happens when you push the earth to a certain extent. Did we listen, do we
follow--I mean, unless it's in our self-interest to act in a quick way, it
seems like often we don't. So I'm a little pessimistic about it. I think the
parallels are there, and more people bring it up than I do. Virtually every
letter I get--I mean, the people who are living in the heart of the southern
Plains in the 1930s who are dying now, overwhelmingly--I mean, they aren't
environmentalists. You wouldn't see them at green conferences. They wouldn't
be the kind of people who would be talking--you know, who would be going to
see Al Gore's movie on global warming. They're farm folks who are
homesteaders, and they--so many of them told me in their interviews, `We knew
we made a mistake. We knew we did a sort of crime against the land. We know
we pushed it.' And so they see this thing as sort of the revenge of the land,
too, and I think that's the lesson out of here.

GROSS: Tell us about one of the most interesting like photos or journals or,
you know, objects, whatever, that you found in people's drawers or shoe boxes
doing the research for your book.

Mr. EGAN: A lot of people took sort of, you know, really primitive snapshots
of various Black Sunday-like storms in which you saw the barn out back and
then a minute later--they'd say, `I took this picture; a minute later, the
thing was completely black, so it doesn't really show much except for how the
storm engulfed it.'

To me the most interesting of these sort of real artifacts, these firsthand
accounts was I was in Nebraska and I found this amazing diary. It's in the
book. It takes up three chapters of the book, and it just breaks my heart.
It's a diary written by a man. Now men aren't real emotive and he does start
out with his usual, you know, `July 13th, 1935. Wind blowing 25 miles an
hour. Temperature got up to 76 degrees. Not much else to report.' So he
starts out, you know, typical guy, describes the weather, describes the wind,
you know, very nonemotive, and gradually as time goes on, he starts to
describe the breakdown of his marriage and the breakdown of his farm and the
breakdown of his life. So, finally--this is a man in his 40s, so finally he's
writing these entries where he's saying, `Not much left to live for. I love
my wife so much but we're going to have'--she has to go to Denver to get a job
to work as a maid for a doctor because they're totally broke, and the bank is
taking their farm, but he refuses to give the farm back so he sticks behind.
And he talks about plowing up the land in the spring and his optimism--and
then the optimism is totally wiped out by a storm that comes along in June and
just sends everything he'd done to the sky, sends it up 10,000 feet high, and
so it's a drip, drip, drip--it's slowly, this disintegration of a human being,
and you'll see in those entries how it goes from, again, just very elemental
discussions to a broken heart.

GROSS: Well, I thought we might close with one of the Woody Guthrie
recordings of a Dust Bowl ballad and I was wondering if you have one that you
find particularly good at describing what it was like then.

Mr. EGAN: Do you have--I don't know if you have in your archives, but Woody
Guthrie wrote a song at the end of Black Sunday, April 14, 1935. Woody
Guthrie was living in the Texas Panhandle, not far from Amarillo, and this was
before he was Woody Guthrie. I mean, he became the Dust Bowl poet, but
actually, he left the Dust Bowl shortly thereafter. He was plucking around
going from, you know, county fair to county fair, and he said in his biography
he used to sell bootleg whiskey in this little county fair booths, and that's
where he learned to play guitar. So he's in this little area outside of
Amarillo, Texas, on the day that Black Sunday happens, and they're calling
south. They put in the phone tree. They're saying, `This is Kansas City. We
just saw this thing. It's 10 miles out and it's headed south.' So then when
it hit Oklahoma, they started calling Texas. They said, `It's coming. It's
coming. It's coming.' Now it's Sunday afternoon, nearly evening, and Woody
Guthrie's outside, and he sees this giant mountain, this just humongous thing
coming. He goes inside this little place where he's staying and he said there
were about 10 people inside this room, and they're all gathered around this
one light bulb that's glowing. He said it's like being around the end of a
cigarette butt, but they can't see anything and a woman shrieks out, `It's the
end of the world. It's gone. We'll never see each other again. The end is
here. The end is here.' And he said he wrote a song called "So Long, It's
Been Great to Know You." He came up with the initial lyrics for that song from
that Black Sunday.

GROSS: Well, why don't we end with Woody Guthrie singing "So Long, It's Been
Good to Know You"? And, Timothy Egan, thank you so much for talking with us.

Mr. EGAN: Oh, it's been a great pleasure. Thank you, Terry.

GROSS: Timothy Egan won the National Book Award for his book, "The Worst Hard
Time." He covers the West for The New York Times.

(Soundbite from Woody Guthrie's "So Long, It's Been Good to Know You"

Mr. WOODY GUTHRIE: (Singing) "I've sung this song but I'll sing it again of
the place that I lived on the wild windy Plains. In a month called April, a
county called Gray, and here's what all of the people there say. So long,
it's been good to know you. So long, it's been good to know you. So long,
it's been good to know you. This dusty old dust is a-getting my home, and
I've got to be drifting along. A dust storm hit and it hit like thunder. It
dusted us over and it covered us under, blocked out the traffic and blocked
out the sun, straight for home all the people did run, singing: So long, it's
been good to know you. So long, it's been good to know you. So long, it's
been good to know you. This dusty old dust is a-getting my home, I've got to
be drifting along.

(End of soundbite)

GROSS: Coming up, how the end of life has changed and how the medical system
hasn't adequately adapted to those changes. We talk with journalist Stephen
Kiernan about his new book, "Last Rights."

This is FRESH AIR.

(Announcements)

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Interview: Journalist Stephen Kiernan talks about his new book,
"Last Rights: Rescuing the End of Life from the Medical System"
TERRY GROSS, host:

New life-extending medical technology and medicine have also extended the
length of time people spend in a downward spiral as they face death.
Journalist Stephen Kiernan says the medical system isn't adequately addressing
how dying has changed. Kiernan is the author of the new book "Last
Rights:"--that's R-I-G-H-T-S--"Rescuing the End of Life from the Medical
System." Kiernan wrote for the Burlington Free Press for 14 years as a
columnist, editorial writer and investigative reporter. He received the
George Polk Award for medical reporting.

Stephen Kiernan, welcome to FRESH AIR. You write in your book that death used
to be sudden. Now it's often gradual. How have the leading causes of death
changed and how has that changed what the end of life is like?

Mr. STEPHEN KIERNAN: Well, 30 years ago, Terry, the leading causes were all
sudden--heart attacks, strokes, accidents--and there was a mobilization,
really, all across society, everything from millions of people taking CPR to
air bags in cars to e-911 service, and those measures, as well as many medical
advances, have been enormously successful. Many, many fewer people die of
heart attacks and strokes and accidents. But we're all still mortal. And
what happens now is our lives end slowly of things like Alzheimer's disease,
Parkinson's, Lou Gehrig's disease. AIDS is a leading killer of young adults,
and the granddaddy is cancer. Now people's lives end slowly, and that
presents really an unprecedented opportunity for people to shape the meaning
and content of the last chapter of their lives.

GROSS: Well, the hospice movement has grown a lot in the past few years but
there are certain trade-offs you have to make if you want Medicare to pay for
hospice. What are some of those trade-offs?

Mr. KIERNAN: Well, there are numerous, and the two that come to mind that
are most difficult are these. A physician has to certify--in order for a
patient to qualify for Medicare reimbursement for hospice has to certify that
that patient will not be alive in six months. Well, one of the problems to
that is that doctors aren't trained to know how close someone is to the end of
their life, so they're notoriously bad at predicting. The other is that
patients and families hear that a doctor is referring them to hospice and they
think, `Oh, the doctor's giving up on me. More and more time that the
health-care system is abandoning patients when, in fact, moving into the
hospice is kind of the opposite experience.

The other major obstacle is for a person to qualify for hospice care, they
have to stop life-prolonging therapies that might have a curative effect. The
classic example is a person who's got an organ failure that requires dialysis.
Well, they have to choose between going into hospice and receiving dialysis.
It's really no choice at all because if you stop dialysis you'll be dead in a
matter of days, if not weeks. So the result is that if there are obstacles
built into the qualification for hospice, that really scare folks away.

GROSS: What are some of the most interesting proposals you've heard made
about how to reform the guidelines for hospice eligibility?

Mr. KIERNAN: Well, the first thing is to get rid of the either/or
proposition. That is, stop dialysis to receive hospice care or turn down
hospice so you can continue your dialysis. The second thing is to take a hard
look at the six months requirement because there's so much evidence that it
doesn't make sense, that it's arbitrary. You know, the third thing would be
to take a look and measure the quality of hospice care and contrast it with
the quality of the intensive care unit model, but the larger question is how
willing are we to look at how the end of life has changed now and be educated
by what we see?

GROSS: A lot of people don't die in hospice and they don't die at home. They
die in a hospital. What are some of the more interesting changes you've heard
suggested for how hospitals could be dealing with the end of life?

Mr. KIERNAN: Excellent question, Terry, because there is really some cause
for optimism there in an idea known as palliative care. Palliative care is a
branch of medicine that really is focused on the patient's comfort rather than
curing. It's not to say that other medical teams might not continue to work
on the cure, but these folks are really concentrating on such questions as `Is
this patient in pain? Is this patient anxious? Is this patient able to
breathe?' And then even some of the emotional and psychological components.
Does this patient have some relationships that he or she would like to mend in
the time that the patient has left? That is, beginning to look at the patient
as more of a person, not just a set of medical problems to be solved. There's
been a lot of money put into educating people about palliative care and
expanding it, and there have been some hospitals--about a fifth of hospitals
in the country now offer palliative care--and as I say, they really are
improving, almost taking the hospice model or elements of the hospice model
into the four walls of the hospital.

GROSS: You use as an example of the end of life your parents' deaths, and you
start with your father, who died at the age, I think, of 68 after having an
aneurysm.

Mr. KIERNAN: Actually, he was 65.

GROSS: Sixty-five. Thank you. And you say your family kept demanding more
care, more interventions, more heroic measures. What are some of the things
you really wanted your father to have after he had the aneurysm?

Mr. KIERNAN: Let me draw a contrast for you, Terry. When he first had
surgery, his breathing tube was inserted in his mouth and after a span of five
or six days, his lips were split and cracked and his tongue was swollen and
very white and sore and dry, so much so that my mother was actually standing
by his bed dipping her pinkie in a glass of ginger ale and swabbing the inside
of his mouth because it was so dry. So they decided to do a tracheotomy, in
which there was an incision in the neck and the breathing tube is put in there
and then they put some ointment on his mouth, and at the time, we considered
this progress. There was never a time that we stepped back and said, `What's
going on? What is this machine doing? What are the ethics of this machine?
What is the purpose of this? What is the prognosis here?' We didn't ask any
of those questions. It makes me very sad to think about what we did to him
with all of the best intentions.

GROSS: How do you think you would have handled it differently today?

Mr. KIERNAN: Well, I know how we handled it differently because four years
later, my mother was faced with an aggressive small-cell breast cancer that
spread all over her, and we knew enough to concentrate on different things,
and it's not to say that we didn't exert a lot of medicine on her behalf. We
did. But there were also limits to that. She was offered a surgery, for
example, that a very renowned physician said was her only hope at a cure. It
was called a hemiquadrantectomy, and, Terry, what they do is this incision
starts just below your ear and comes down to the center of your throat and
down the center of your chest and then back under your arm, and everything
outside of that incision is removed, and you know, she was never going to
button a shirt again or you know--an incredibly disfiguring, disabling
surgery, and when that was presented to us as her only hope for a cure, you
know, she patted the doctor on the head and said, `Thanks very much,' and she
went home and went Christmas shopping, even though it was September and began
to make preparations for a different path that enabled us all to be around.
She died in her bed with family at her bedside, her prayer book in her hand,
her pain managed. It couldn't have been more peaceful.

GROSS: My guest is journalist Stephen Kiernan, author of "Last Rights:
Rescuing the End of Life from the Medical System."

We'll talk more after a break. This is FRESH AIR.

(Announcements)

GROSS: If you're just joining us, my guest is journalist Stephen Kiernan.
He's written a new book called "Last Rights: Rescuing the End of Life from
the Medical System."

Well, a lot of people do have DNRs, Do Not Resuscitate orders, which basically
says, if they're going to die, don't go through extreme lifesaving measures
like a ventilator or a feeding tube, you know, if death is looking inevitable.
Do you think that those aren't handled well enough or that not enough people
have them? Are they respected once you have one?

Mr. KIERNAN: Boy, there's a lot of layers to that. Terry, DNRs in
particular are respected, and the reason they are is that it's not something
that the patient demands. It's an order that a physician signs into the
patient's chart, and it's usually marked on the door or at the foot of the
bed, so that the people know if the patient's heart stops that the medical
team will not do all they can to resuscitate them, and that's really not
end-of-life care. For a person with a DNR, it means their heart has stopped,
their life has ceased, so it's really about `Are we going to try and bring
them back and what kind of measures are we going to take to bring them back?'
There was an almost hilarious piece of research that was done on this where
the researchers watched a year worth of seasons of the main television
programs that are about hospitals and you could name them all, I'm sure, and
they found that 67 percent of the people whose heart stopped recovered
miraculously. They got that jolt on the chest and they got a little
adrenaline in their bloodstream, and, you know, 32 minutes later at the end of
the program, they're up and headed home.

The reality is about 1 percent of the people who have those extreme measures
survive them, and about half of that 1 percent, the brain damage is so acute
that they never really regain any kind of function at all. Now if you sit
down with someone and say, `This is an illness that could lead to your heart
stopping and we could do this procedure and if you want us to, we will and we
will do our utmost to bring you back when your heart stopped, but you should
know that only about one half of 1 percent is actually going to recover and
have any kind of function.' Most people I think would say, `Don't do that to
me. When I'm gone, let me be gone. It will be a sad occasion but that day's
going to come some day anyway. Let me be gone.' So I think there's some
education necessary, and if the education happens, then the consumers will
make very intelligent choices.

GROSS: The baby boom is about to create a real bulge in the population of the
aging, and that's going to have a lot of health-care consequences. I'm
wondering if you've thought about ways in which you think the baby boom
generation might end up consciously or inadvertently changing end of life
care.

Mr. KIERNAN: Well, I think that they're learning right now. You know, I
learned a little earlier than most because my parents died a little younger
than most. But I have many friends who are experiencing this with one or both
of their parents right now, and they're learning, and what they're finding is
that there's a lot to learn. So, you know, I think that when--way before
their own time comes, they're going to see by watching what their parents go
through. I will tell you that I have a very clear idea about what I want for
end of life care as a result of my parents' experiences and the huge gap
between the quality of one and the other. And one of the things I'll be
damned if I'll inflict it on my sons the kind of dilemmas that were inflicted
upon us. You know, we had seven children in the family and my mother trying
decide whether or not to cease my father's dialysis. That's seven people,
eight people, excuse me, each with a different relationship with the patient,
each with a different relationship with the health system and science, each
with a different relationship with God and with the idea of the afterlife, and
we're supposed to reach some kind of consensus. I won't do that to my sons.
I've got very clear instructions so that they are absolved from that kind of
ethical dilemma because there is no right answer when you're in that kind of
situations.

GROSS: You said you want to spare your sons the kind of difficult decisions
that your family had to make about your father. So what else is in your
medical directive?

Mr. KIERNAN: Mine is--I think one of the realities that was impressed on me
in the course of this research and spending so much time with people whose
lives were ending and their families was that I came to accept the fact that I
will indeed die, and, obviously, it's self-evident, but I actually thought
about it, and the more I thought about it, the more I thought about how I
could protect my sons and my siblings so I have very specific instructions. I
can be kept alive up to 48 hours so that my sons--by any means necessary--so
that my sons can say goodbye and any of my siblings who care to, and then I
want everything turned off and I want to be put in the sun. And I joke with
my brother who has the authority to make these decisions that if that doesn't
work after a little while, he can put a pillow over my head, and it's all
right.

GROSS: That's not really in the document though, is it?

Mr. KIERNAN: No, no, that was just in our conversation. But, you know, it
actually brings up a serious point, which is that when you put somebody else
in charge, then you want to have a conversation with them.

GROSS: After having, you know, written this book and after having watched the
death of both of your parents, do you have a different sense of what it means
to keep somebody alive, you know, to have the priority being just `Do what you
need to do to keep them alive for as long as they can be alive'?

Mr. KIERNAN: Well, I think my sense of it is confusion, Terry, that keeping
someone alive under any means necessary can be a substitute for looking at
reality and doing the most caring thing, which might be not another surgery.
It might be a bowl of ice cream. It might be some pain medication. It might
be bringing in a person that the patient had conflict with so that they can
reconcile. And those opportunities can be so meaningful and rewarding
that--compared with passivity of `Let's have another surgery and we'll cross
our fingers and we'll hope, hope, hope for a miracle.' Well, you know,
miracles do happen, I suppose, but mortality happens, too. We're all going to
go, someday. Sometimes it makes sense to flex every medical muscle, and
sometimes the best thing you can do is sit by somebody's side and hold their
hand and stay there and just stay there, and that that's what's really needed.
That takes a certain kind of compassion and a kind of love and an opportunity
for love that is quite new.

GROSS: Stephen Kiernan is the author of the new book "Last Rights: Rescuing
the End of Life from the Medical System."

I'm Terry Gross.
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.

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