First an excerpt from Studs Terkels book that had me thinking about this topic and because we don’t read enough of this Chicago institution:

Interviews with a paramedic, a social worker, an undertaker, and a mother about their experiences with death and dying

     Will the circle be unbroken,

     by and by, Lord, by

     and by. There's a better home awaiting

     Far beyond the starry sky.

                         --old hymn, sung by Doc Watson

On December 23, 1999, as I was beginning to interview people for a new book on death and dying, my wife, Ida, died. She had been my companion for sixty years. She was eighty-seven. A few months later a friend of mine, disturbed by my occasional despondency, burst out, "For chrissake, you've had sixty great years with her? Ida had lived seventeen years beyond her traditionally allotted three score and ten, though on occasion I'd heard her murmur in surprise, "Why do I still feel like a gig?" They were roller-coaster years we shared, after I first spotted her, in a maroon smock, in 1937. She was a social worker during most of those tumultuous years: the Great Depression, World War II, the Cold War, Joe McCarthy, the sixties, the civil-rights and peace movements. She was, as they say, "involved." Garry Wills remembers her greeting him, years after the Vietnam War had ended, with "Oh, we were arrested together in Washington."

A year or so before Ida's death Laura Watson, a neighbor, "looked out the window and saw this slim young girl in jeans, with a flower in her hair, plucking out weeds in her garden." The girl looked up. "It was Ida, of course." Gwendolyn Brooks's bet was "She could dance on a moonbeam."

Yes, she did live to the ripe old age of eighty-seven, but it doesn't cut the mustard, Charlie. I still see that girl in the maroon smock who liked yellow daisies. Each week there is a fresh bunch of yellow daisies near the windowsill. On the sill is the urn containing her ashes. On occasion, either indignant or somewhat enthusiastic about something, I mumble toward it (her), "Whaddya think of that, kid?"

Naturally, when I pick up a newspaper these days, the first place I turn to isn't sports, or arts, or the business of business, or the op-eds. I immediately turn to the obituaries. The old doggerel with which many mature readers may be acquainted has become my mantra.

    I wake up each morning and gather my wits, I pick up the

    paper and read the obits. If my name is not in it, I know

    I'm not dead, So I eat a good breakfast and go back to bed.

Ed Reardon – Chicago Paramedic

"I'm a Chicago boy, born and raised on the North Side. I spent about fifteen years on the job as a paramedic in Chicago, working the streets all over the city. Ostensibly, you're the eyes and the ears of a doctor. When a doctor can't be on the scene, they'll send guys like us. I like to call us `gutter medics,' because we work in the gutter, we work wherever we find a patient. Sometimes it takes you to some pretty strange places, strange situations. The police don't have paramedics. Chicago's paramedics are strictly underneath the fire department's auspices. We work twenty-four hours. We start at eight in the morning, we get off at eight in the morning, You take two days off, and every fourth day you'd get a day off. That gave you essentially five days off in a row, so you had time to decompress. During a twenty-four-hour period, when I first started out, we could do easily twenty-five runs, be a minimum of one run an hour. No sooner would you put a patient down than you'd be picking up another one. You'd be going like that all day for twenty-four hours. So when you got off work in the morning, there really wasn't much left of you. You spent your first day walking around in a daze. The day after that, you'd just be recuperating, and then you'd go back to work.

"There was a set protocol that we would follow. Some-times life isn't black and white, it's all nothing but shades of gray. By law, we cannot pronounce someone dead. It takes a physician to pronounce someone dead. If you have a skeleton there, you know the guy's dead. Profound postmortem lividity: that's where the blood is all settled in the lower regions of the body and there's no resuscitating this guy. Decapitation: the head's cut off. Profound rigor morris: where he's as stiff as a board and you're not going to budge him. It doesn't rake a medical genius to spot someone who's dead. But by law, we're obliged to at least make an effort. Sometimes you have to make calls that are really going to put you on the line. For instance, we were called into a home and the guy was dying of cancer. He was in his bed, he had his family around him, and you could see that the disease had completely ravaged him. He was unconscious but he was gasping for air; he was breathing his last breaths. I called the hospital and I said, `Listen, here's what we got. The family doesn't want him resuscitated. There's no point. What should we do here?' They don't know what to tell us. They don't want to stick their necks out. They don't want to say, 'Okay, do not resuscitate; This was before there was such a thing as living wills. I know that if we don't make some kind of a decision, this guy, his last moments are going to be very undignified. We're going to go through a whole resuscitation. That means doing CPR, cardiopulmonary resuscitation, on him, putting a tube down his throat. In a situation like this it would be debasing him. He's not quite a vegetable, but he's not going to be viable. As we're sitting there, he literally breathes his last breath. He utters out a shout and he stops breathing. I look around and I mean, I see it's a Catholic family, we're a block away from the church that I grew up in, Saint Andrew's Church. From my Catholic upbringing. I went to them and I said I'd already called a priest and he was on his way. I said, 'Why don't we gather around and say a prayer to Saint Joseph?'-the patron saint of a happy death. Saint Joseph is the patron saint of just about everything, actually, hut a happy death is the one thrown in there. The family went with that They thought it was a great idea. We kept them calmed down. We took the guy, we put him in the ambulance, and we took him to the hospital to be pronounced. Now I'm wondering. When I get there, am I going to nm into some doctor or some nurse who's going to call me on this? As it turned out, the doctor understood our position, the priest was there. It was fine with the family. He was dead and he was going to stay dead.

"You can't afford to leave yourself, any part of yourself, with any one of the victims. Grief is grief. Denial is denial. I don't think anything used to make me more angry than suicides. The worst suicide that I ever saw wasn't gory or anything like that It was really contained. It was a nineteen-year-old kid who took a shotgun, put it in his mouth, and pulled the trigger. For some reason it didn't make a mess like you would expect it to. He sat in a very contained position against the wall. And it was the attitude that we found him in, the body, hare feet. He looked like a child, he looked like a kid. He left a suicide note on the counter. That was my big mistake--reading it. You separate yourself from things and you develop a thick skin. You try not to identify with the people that you have to deal with. Well, this kid left a note to his father and his brother about how he was tired of being treated as if he were retarded because he was very hard of hearing. He couldn't talk right, and he couldn't hear. And that's what drove this kid to suicide. My big mistake was instead of looking at him and walking out of the room and forgetting about it, I bothered to read the note. And that's why it stuck in my head, it stuck in my mind?

Matta Kelly

A worker at the University of Illinois Community Outreach Intervention Project, School of Public Health

"I don't know anything about living wills. But I knew I there was a form that all the case managers had that was like, `I don't want to be hooked up to a machine.'

So we filled out this form. So Norma, she was an African-American transvestite, used to come in the office all the time. But she would always come in and say to me, `Matta, do you still have my papers, my living will? I want to make sure that you take care of me when I'm dead. I don't want to be hooked up to no machines. When I'm buried, I want to look my best Make sure that I have a nice wig, make sure that I have a nice dress.' We know how the HIV makes people suffer. It progresses into loss of weight, all kinds of bad, bad illnesses. We talked about it--that maybe it would be better if she took a really, really nice picture when she's all dressed up, and I would keep that picture until she died. And she did that. She got a picture, she was all dressed up with a red dress. Around Christmastime she had taken the picture, very nice.

"So I get a call one day. She's in a coma. This was just last year. So I go to the hospital. Norma had a boyfriend, Wayne. Now it was my job to figure out a way to sell the boyfriend onto what Norma wanted. Because Norma never told the boyfriend that she didn't want to be hooked up to machines. She, Norma, was a nurse's aide at one time in her life, so she knew a lot about being hooked up to machines. When I got to the hospital, I met the boyfriend, and Norma was all hooked up and swollen. The doctors told me that she was in liver failure, hut she had a chance to come out of it This went on for almost a month. I would go up there a couple or three times a week, when they needed me to sign papers. They were trying this and they were trying some other thing. They always had to ask my permission when they wanted to do something, because I have the power of attorney. In the meantime, I had gone into her room and I was standing next to her and she smelled very had around her head. She had a hairpiece on. I was smelling around her to see if I could find where the smell was coming from, and it was coming from the hairpiece. I know the nurses and doctors could smell the same thing I did. When I lifted up the hairpiece, Norma had obviously glued it on with glue and it was all molded and rotted. And I had to get scissors myself and cut that piece off the top of her head.

"Then I started thinking Norma would not want this. She would absolutely not want this. So I started talking to them about taking her off the ventilator. Pull the plug. She had three different doctors: the head doctor, the doctor in the middle, and then the lowest one on the totem pole. AH of them were telling me different things, One of them said, `If we unplug her, she will die.' The other one said, `If we unplug her, she might live and she might continue to breathe.' And the third one was telling me, `If we unplug her, it's going to be a really ugly death and she's going to be gasping and she's going to suffer.' So I had to think some more about this. This was such a difficult decision. This was a decision to take a human life. And I am not a trained person. The only thing I can go by are my instincts and my compassion, and what she wanted.

"Without my knowledge, they moved her to a coma center. It's where everybody is hooked up to machines. First I called to see how she was. When I called, I asked about Norma Sanders. And they are telling me, `Oh, you mean Norman Sanders?' I said, `No, Norma Sanders: They kept telling me, `Oh, there must be a misunderstanding on the computer.' I think I heard them giggling in the background. So when I went to the hospital, I was very upset. I asked to speak to the head nurse. I brought a picture of Norma with me, that beautiful picture of her. And I said, `This is the person that's lying in that bed. She always lived as a woman. She wants to be treated as a woman. And she wants to die like a woman.' [A pause.] They all were laughing, showing it around, `Look at this, look at this; I was very upset. I asked to speak to the head person, and I told him, `I'm really upset. This person wants to die, number one, with dignity.' So what I did, I stuck her picture above her bed in that coma center. And I asked them to take her off the ventilator because I wanted to allow her to die. [Infuriated.] And they're still arguing with me. 'Oh, we have to get the ethics committee together; and all this crap. I had a living will and they wanted to talk about ethics, okay? They had told me, `She will never come out of this. Her kidneys have failed, her liver has failed, her heart is failing.' But they want to keep her there on that ventilator thing. I met with the social workers and I told them that I wanted her unplugged and they were supposed to unplug her the following day. I had the right.

"So I went into Norma's room. I stuck my finger in her hand like this ... and I told her, I said, `Norma, I have promised you for ten years that I would make sure that you died with dignity. I would make sure that you wouldn't have to be in pain. And I'm here to take care of your wishes. If you understand me, squeeze my finger: And she squeezed my finger. And then I told her, I said,' Norma, your cats are okay. Your rent is paid. Wayne is fine. Everything is taken care of. Your house is dean. Phone bill is paid. Everything is okay. You can just let go. I know you're in pain. I know you want to stop this. If you still want me to do what I promised you, squeeze my finger: And she squeezed my finger. The next morning she died from a heart attack. And that was the story of Norma."

William Herdegen

A semi-retired funeral director in Chicago. He once had five funeral homes in the city but now has only this one.

After high school I attended Worsham College of Mortuary Science, in 1948. It was actually a two-year course in one year. We went to school from eight in the morning until five at night. If you were working in the morgue on a body, you had to complete it, no matter if it took you till six o'clock We learned embalming, of course. Removing the blood out of the body and replacing it with embalming fluid to preserve the remains. I waited till I got my full license before I went into the service in 1952, the Korean War. I was with the Ninety-second Armored. I was there only thirty-nine days, and we were shelled about thirty of them. The battery commander finally says, `I see here by your records you're a licensed mortician. What are you doing in the artillery?' So they transferred me into the Fortieth Infantry Division, and that's where I worked myself up to head of the burial detail I was in the Division of Graves Registration. The bodies were all taken to an airfield and then sent back to Japan, where they were processed for shipping back home. We had no morgue set up for preparation of the bodies. We were only a couple of miles behind the lines. We just had to get them out of there, fast. It was very scary at first. Our company buried over three hundred enemy dead right there on the spot.

"I came back home in 1954 and for three years worked in several funeral homes in Chicago. Old established ones. I went on my own in March of 1957. I bought out George Westphall, who was there since 1907. Three years ago I gave my son the business. I'm semi-retired now, but I still come in on weekends so he has a couple days off to be with his family. I remember my first case when I started my own business. It was Mr. Knights, a good friend of my mother-in-law's. He lived on Clybourn Avenue. Since then I think I've buried most of that family. They stuck with me. It was a little scary at first. I did everything myself. In fact, I still do, even when I come in on the weekends. If we have a death call, I go out on it, and I come back and embalm the body. If the person dies at home, then we go to the home. We have to call the doctor to sign the death certificate. Then we go and pick up the remains, bring it back to the funeral home. Most of the time it's two or three o'clock in the morning, so the family'll come in about nine o'clock the next day and make funeral arrangements. By that time I've got the body all embalmed and everything. I work all night, all hours. Seven days a week, three-hundred-sixty-five days a year, we're on call. Now I'm on call Friday night till Monday morning, when Joe, my son, comes.

"The main thing was, you try and comfort them and help them. Especially if it's a woman. A lot of times the man did everything and the woman didn't know what to do, so you would help. If the man had been a veteran, I'd take them to the veterans' office, over on Belmont, when it was there. Billy Duffy--I buried him when he died--would fill out all the papers for them so they'd get their benefits. Then I would take them to the Social Security office, sign them up for their benefits. Then I would take them, if they had insurance, I would take them to the insurance office. People would talk about how nice I was and everything, Of course, I had the time. I didn't have that big a business.

"At first many funeral directors were afraid to handle people with AIDS. We were the first. I think my first case was in 1985. The man was a very good friend of mine. I said, `You don't look good: He said,' I can't go to the doctor, I don't have any money: I talked to a friend of mine, and he says, Take him to the hospital and just leave him there, and they'll have to take care of him: I took him to the University of Illinois. I went to see him the following day, and his door was closed. The nurse says,' You can't go in there: I said, `What do you mean?' She says, `You gotta put on a gown and mask--we think he's got tuberculosis.' I put on the mask and the gown. The next day I came, there's a sign--You must see the nurse at the station before you can go in to visit. I went there and they said, `You've got to put on full gown and mask.' And I says, 'Yeah, I know from when I was here yesterday."No, he's got AIDS; she says, `be very careful.' That was how I first started.

"I was on the board of directors for Chicago Funeral Directors. I was put on the infectious-disease committee. I talked to the different doctors. They told me what to do. I had a funeral director from Libertyville call me, and he says, `I got an AIDS case. I don't want it. Do you want it? I'll send it down to you.' I says, `Yeah, no problem.' So the people come in and they said, `We've been to three funeral homes. None of them would take him. I want to tell you right now, my brother's got AIDS.' I said, `No problem.' The others were afraid of catching it.

"I was the only one for three years, till '88. Then it was mandatory under the American Disabilities Act. They had to start taking them. One case sticks in my mind. This man came in, and he said, `My partner died.' He had durable power of attorney. He wanted to go back home after his partner died. His partner's mother says, `We don't need you. We don't welcome you no more.' He went home, and the following week he hung himself. So we had the two within a week's time. I'll never forget that.

"I've had actors, florists, caterers, the organist from church here died of AIDS. Like I say, I've had every walk of life. The one case I had, a boy was in Vietnam and his father was, I believe, a colonel The boy stepped in front of a train and the train hit him. My son and I worked about eight hours on him, putting him back together. The father insisted he wanted to see him. One arm was tore off. We sewed it back on. The father took a look at him and he says, `It don't look like ...' I said, `It wouldn't.' There was nothing missing' it was just that from the impact his face was twice the size as normal. We fixed him up the best we could. He says, `I want to thank you' he says,' that's him. But it don't look like him: We worked from a picture.

"The hereafter? Yes. I feel that when I get up there I'm gonna see all my friends and relatives and everything, and we're gonna have a helluva time. I really do. Before I go to sleep at night I pray and thank the Lord for giving me another year. And I've done good. From a little place down there where we never broke a hundred cases a year, and we moved in here. The first year we did two hundred and six. It's fallen down a little bit because a lot of people are going through the Cremation Society. And the AIDS cases have dropped quite a few too, because they're living longer.

"Most of your cemeteries are all full now. Take Saint Boniface, on Lawrence and Clark, that's full. Saint Henry's, on Ridge, it's full The only burials they have are the ones that own the lots. Saint Joseph is full. That's where my grandparents and parents are. I've got my name on the stone already. When my mom died, my dad remarried, and his second wife wouldn't bury him there--she wanted him next to her family at Saint Boniface. So I asked if I could have that grave. It'll be double interment. Whoever dies first, my wife or I, they go down eight foot, and then the other one will be put on top. There was another grave on the other side of my mom, and my brother died very suddenly. I'd asked him if he would like that grave, and he said he would.

"I don't fear death. No. In this business, a couple of times I've shaken hands with a man coming out of church, and I get home and I get a call, 'Mr. So-and-so died: `I just saw him a little while ago--I shook hands with him at the church."Yeah, he's gone. He come home, into the house, and down he went.' It's all over with. My wife and I both have the living will. We don't want to be hooked up. I've seen so many people come in where the body is rotting already, but they keep 'em going with the machines. I think that's so wrong. They're rotting before the heart stops, put it that way.

"I took over in 1957, in March, and my mom died in '58. We were all laughing and joking, she'd baby-sat for my children the night before, and the next day she was gone. I had taken out a baby to be buried, and I got home and my dad called and he says, `Come over quick, something happened to your mother.' She had diabetes bad and she went into a diabetic coma. We got her an ambulance, got her over to Masonic, and in an hour and twenty minutes she was gone. She was only fifty-one. And then I lost a sister in '53. She had cancer of the throat, esophagus. I lost my brother, the baby of the family. We just buried him two years ago. He was sixty-five. I'll be seventy in December, and I was glad to get out of my fifties. My grandmother I think was fifty-two when she died. My mom, I had my friend do because I just couldn't handle it. My sister that died of cancer, I used to go every week to talk to her. She was at home. She was resigned that she was gonna die, and she said, `Bill, I want you to promise me that you'll embalm me. I know your work is beautiful.' She, too, had lost a lot of weight. I says, `Oh, Cheryle, that's a big promise.' She says, `Bill, please do it.' And I did. I embalmed her. In fact, all the rest of my family I took care of. My mother I couldn't handle. All my aunts and uncles ... they didn't bother me as much as my own siblings. That's where it gets a little sticky, when you have to do your own family. It's kind of hard.

"I want my son to do it for me. Like with my sister, he said, `You're asking a lot of me, Dad.' I said, `I know, but I respect your work.' Everybody that comes in there that he's taken care of, the family says, `Oh, your son, he did a beautiful job. My mom looks so nice.' A lot of these boys that died from AIDS, sometimes they wither away to just about nothing. I go and rebuild them from a picture. I use silicone. People come in, especially their partner, and they say, `Oh, that's how he looked before he got sick. Thank you, thank you.' That's what makes you feel good. Joe is the same way. He goes out of his way to try and get that likeness again. I've been to some funeral homes, they don't take the trouble. Where the coat was like this, careless, I went up and straightened it out. Or if he wore his hair straight back and they've got it parted to the side, I say, `No, he wore it back, give me a comb: And the family goes,' Thank you, thank you. We didn't want to say nothin." They were afraid to say anything.

"I buried two of the boys that were found under Gacy's house.[a] One, the funeral directors all got together. I had six funeral directors for pallbearers. There were no outsiders. I was so proud of the Funeral Directors Association that time. I think there was thirteen or fourteen unclaimed bodies. The cemeteries donated the plot, and the monument dealers donated a stone. The one I had went to Irving Park Cemetery, and the stone read ONLY KNOWN BY GOD ALONE.

"They all went out of here fully dressed and most of them in tuxedos. When the tuxedo went out of style, a friend brought me in a whole carload of them. So when they had nothing, indigent, veterans that we got out of the TB sanatorium or the VA hospital, they would send them over to me and I would bury them for Veterans' and Social Security. Whatever I Sot, that's all I got. I put them all in tuxedos. People would say, `I thought he was penniless, I didn't think he had any money.' I said, `I took care of it.' I gave him suit, shirt, tie, underwear, everything. They went out first class."

Mamie Mobley

A retired Chicago public school teacher. In 1955 her fourteen-year-old son, Emmett Till, was killed while visiting relatives in Mississippi. He was her only child. Two white men, Roy Bryant and J.W. "Big" Milam, were accused of the murder. Though the evidence against them was overwhelming, they were acquitted by an all-white jury. The case had international repercussions and is still considered a significant prelude to the civil-rights movement. This conversation took place in September of 2000, forty-five years later.

"Emmett just barely got on that train to Mississippi. We could hear the whistle blowing. As he was running up the steps, I said, `Bo,-that's what I called him--`you didn't kiss me. How do I know I'll ever see you again?' He turned around and said, `Oh, Mama.' Gently scolding me. He ran down those steps and gave me a kiss. As he turned to go up the steps again, he pulled his watch off and said, `Take this, I won't need it.' I said, `What about your ring?' He was wearing his father's ring for the first time. He said, `I'm going to show this to my friends.' That's how we were able to identify him, by that ring. I think it was a Mason's ring.

"I got four letters from him in a week's time. My aunt in Mississippi wrote me a long letter in praise of him. How he helped her in her kitchen, with the washing machine, preparing the meals. The way he did things at home. He'd say, `Mama, if you can go out and make the money, I can take care of the house.' He cleaned, he shopped for groceries, he washed. Do you remember when Tide came out? h was in 1953, two years before he went to Mississippi. He told me about the advertisement: `Tide's in, dirt's out.' All the neighbors knew him.

"I didn't know what happened to him until the following Sunday.

"I'm a seventy-eight-year-old woman. I have lived all my life being brought up in the church. I feel that I'm a very strong woman. When I lost my son, that's when I found out that I really had two feet and I had to stand on my own feet. I had to stand and be a woman.

"There was nobody around who could really help me. Everybody was so in tears. I had to calm them down. They couldn't help me if they were going to be hollering and screaming So I found out, in 1955, that I was very capable of getting the job done, even though I couldn't see for the tears.

"I was able to get it done.

"The spirit spoke to me and said, `Go to school and be a teacher. I have taken one, but I shall give you thousands: I have to identify that as a spirit being bigger than I am. I was the only one hearing that voice.

"I had ordered Emmett's body brought back to Chicago. It was in three boxes. He was in a box that was in a box that was in a box. Each had the Mississippi seal and a padlock on it. It was the biggest box I'd ever seen in my life.

"I said to the undertaker, `Give me a hammer. I'm gonna break that seal. I'm gonna go into that box. I don't know what I'm burying. It could he a box full of rocks. It could be cement. It could be dirt. I've got to verify it is my son in that box.'

"They had laid him out on the cooling board. His body was still in the body bag. [She has difficulty, weeps. A long pause.] The undertaker unzipped the bag. And that's when I saw all that lime. They hosed him down. And, oh, my God, I knew what that odor was by then. It was not the lime. That was my son I was smelling.

"I glanced at his head and it was such a mess up there, I just had to turn away. I started at his feet. I knew certain characteristics about him. I knew how his knees looked. I knew how his ankles and feet looked. I made my trip from his feet up to his midsection, identifying what I could.

"And then I saw this long tongue hanging out of his mouth. What on earth? They were looking for me to fall out, and I told them, "Turn me loose. I've got a job to do.' I said, `I can't faint now.' I began a real minute examination. I looked at his teeth, and there were only about four of them left. He had such beautiful teeth. I moved on up to the nose. And it looked like somebody had taken a meat cleaver and had just chopped the bridge of his nose. Pieces had fallen out. When I went to look at his eyes, this one was lying on his cheek. But I saw the color of it. I said, `That's my son's eye.' I looked over at the other and it was as if somebody had taken a nut picker and just picked it out. There was no eye. I went to examine his ears. If you'll notice, my ears are detached from my face and they kind of curl on the end. And his did too. There was no ear. It was gone. I was looking up the side of his face and I could see daylight on the other side. I said, `Oh, my God.' The tears were falling and I was brushing tears away because I had to see.

"Later, I was reading the Scriptures. And it told how Jesus had been led from judgment hall to judgment hall all night long. How he had been beaten. And so much that no man would ever sustain the horror of his beating. That his face was just in ribbons. And I thought about it and I said, `Lord, do you mean to tell me that Emmett's beating did not equal the one that was given to Jesus?' And I said, `My God, what must Jesus have suffered?'

"And then I thought about some of the pictures we see, where he had this neat little crown of thorns and you see a few rivulets of blood coming down. But his face is intact. And according to Scriptures, that is not true. His visage was scarred more than any other man's had ever been or will be.

"And that's when I really was able to assess what Jesus had given for us, the love he had for us.

"And I saw Emmett and his scars. Lord, I saw the stigmata of Jesus. The spirit spoke to me plainly as I'm talking to you now. Jesus had come and died that we might have a right to eternal life or eternal hell or damnation. Emmett had died that men might have freedom here on earth. That we might have a right to life.

"That was my darkest moment, when I realized that that huge box had the remains of my son. I sent a very lovable boy on a vacation. Emmett, who knew everybody in the neighborhood. They'd call him whenever they wanted something done. `Mom, I gotta go help Mrs. Bailey.' He was the block's messenger boy.

"What might have been? He's never far from my mind. If Jesus Christ died for our sins, Emmett Till bore our prejudices, so ..."   

 a John Wayne Gacy, the murderer of dozens of young men, whom he buried under and around his house. 

~~~~~~~~

By Studs Terkel

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The text of a speech given to the Hemlock Society (now End of Life Choices) from a religious perspective.

http://www.dyingwithdignity.ca/index.html

http://www.endoflifechoices.org/index.jsp

Death:  A Friend to be Welcomed, Not an Enemy to be Defeated

An address to the National Convention of the Hemlock Society in San Diego, California, on Saturday, January 10, 2003.By John Shelby Spong The Eighth Bishop of NewarkThe Episcopal Church

            I am both honored and delighted to speak to this national gathering of the Hemlock Society.  It is a rare experience for a bishop of the Christian Church to be invited to address this group.  It is probably rarer still for a bishop to accept such an invitation.  There appears to be a deep and enduring division between the principles of the Judeo-Christian tradition, which is the dominant shaping religious force in Western civilization, and the principles espoused by the Hemlock Society.  In fact, these two sets of principles are usually seen as mutually exclusive.  Yet, I stand before you today as one who has found a way to embrace the truth arising from both traditions.

I am a practicing Christian, an ordained minister, and an elected bishop in my church.  Indeed, when I retired three years ago, I was the senior active bishop in the Episcopal Church in the United States in point of service.  That represents a long career in a position of major leadership.  Yet, at the same time, I deeply support physician-assisted suicide.  I believe that if and when a person arrives at that point in human existence when death has become a kinder, alternative than hopeless pain, and when a chronic dependency on narcotics begins to require the loss of personal dignity, then the basic human right to choose how and when to die should be guaranteed by law and respected by our communities of faith.

I have spoken publicly in favor of this conviction for years but always as an apparently lone voice in my church.  Yet following a year of study, my Episcopal Diocese of Newark, which covers all of Northern New Jersey, meeting in its annual convention in 1996, endorsed, by a 2 to 1 majority, physician-assisted suicide as a moral option for Christians.*  That convention was made up of 600 people; approximately 450 were elected lay people and 150 were ordained clergy from our various and diverse congregations.  This was the first time, of which I am aware, that an official body within a mainline Christian Church in the United States of America had taken an official stand on this question.  Empowered by that witness, I testified, as the leader of that Diocese, before a House of Representatives Committee of the Congress of the United States in Washington stating my support for making this a legal right for all of our citizens.  The Congress regrettably did not agree with me.

Later, the Supreme Court of the United States, by a 9 to 0 majority, refused even to open this subject for debate by providing us with a minority opinion.  So there is work to be done, vast amounts of work.  Our task is to educate the public, the lawmakers, and the judges of this nation as to the rightness of this cause.  Our ability to turn the opinion of the religious communities of this nation on this subject will be a major task in that educational process.  I hope this address at this gathering will inaugurate that vital campaign.

I want to assist this audience and through this audience to assist the listening world to understand the sources of the religious negativity that hover around all of the end-of-life issues.  Then I want to propose a way in which this negativity can be addressed and hopefully changed.  Because I am both a Christian and a supporter of the right to determine how and when I will die, I want to demonstrate that one does not have to abandon a traditional religious commitment in order to embrace what I now regard as a compelling new freedom.  Indeed I seek to present myself to you as a living illustration that a person can join together the principles of the Hemlock Society with the Christian conviction that life is ultimately holy.  That is not an easy assignment in either camp.  I will doubtless be forced to defend my very presence in this assembly to the majority of those who live in my faith community.  I suspect that many of you will have to defend your willingness to invite a bishop to address this conference to the majority of your constituents.  So let me begin that defense.

The Judeo-Christian faith story opens with the assertion of life’s sanctity.  The creation narrative presents us with a portrait of human life as being made in the divine image.  Christians have derived from this assertion that the power to live or to die is not a decision that properly resides in human beings.  That power, it is typically said, belongs to God alone.  Therefore, the traditional Christian concludes, no one can be given the liberty of ending his or her life under any circumstances.

That principle permeates Christian thinking.  Yet, a look at Christian history will reveal that it has been randomly and inconsistently applied.

In the course of that history, we Christians have not left the power to die exclusively in God’s hands.  Rather, we have fought religious wars in which people were killed quite deliberately.  God did not kill them; human beings, who called themselves Christians, did.  Many of our victims were people of other religious convictions.  We have justified these political acts of violence with elaborate arguments about what constitutes a ‘just war.’  I do not want to argue on this occasion either the ‘pacifist’ position or the ‘just war’ position.  I simply want to note that in this area, Christians have not left the power of life and death in God’s hands alone.  We have rather abrogated this power to ourselves.

We have also employed the practice of capital punishment in the Christian nations of the Western world for almost all our history.  It is only recently, and quite frankly in the more secularized nations of Western Europe, that the debate on the morality of capital punishment has led some nations to ban this practice as cruel and inhumane punishment.  But the records of history show that Christian rulers in Christian nations, aided and abetted by the prevailing religious hierarchies of the Christian churches, have shown no reluctance whatsoever in claiming the right to take the power of life and death from God’s hands and to place that power squarely into their own very human hands.

Christians have, over the years of their history, used their power to execute their critics again and again as part of their way of enforcing religious beliefs.  A man named Giordano Bruno was burned at the stake in 1600 by the religious authorities of his day because he taught that the earth was not the center of the universe.  That was, of course, a point of view contrary to the prevailing Christian synthesis.

The Inquisition used the same tactic at many different fiery stakes to execute thousands of human beings for the sin of heresy or for the ‘crime,’ as they thought of it, of being a Jew.  The Crusades, officially sponsored by the Vatican, also caused the death of many Jews in Europe because Jews were the only “infidels” that the Crusaders could locate when their romantic journeys to free the holy land from such nonbelievers failed to reach its destination.

The Christian Church has also enforced the ignorance of its prejudice against homosexual persons by having so many of them burned at the stake that the little stick which ignited the fire, called a “faggot,” became a derisive slang word for a homosexual victim.  With a history like that, it is hard to take seriously the religious claims that issues of life and death must remain in God’s hands, and that this is not an arena for human decision-making.

If human beings who call themselves Christians have no scruples about endorsing war, killing religious enemies, or imposing the sentence of death upon those who violate either the norms of faith or the boundaries of prejudice under a set of circumstances in the past, is it still appropriate for Christians to suggest that one cannot elect death for himself or herself under a different set of circumstances in the present?  It seems to me that a certain irrational inconsistency is operating here, which needs to be pointed out to any faith community that espouses such claims.

But in each of these historical instances which I have cited, it will be quickly argued that the people who did these things were motivated, perhaps sometimes mistakenly but nonetheless sincerely, by their commitment to the sacredness of life.  It was not, they will say, that the principle under which they were acting was wrong but rather that it was applied improperly.  In warfare, they will contend, it was the desire to save life that caused Christians to take up arms against a supposed enemy who threatened their life.  In state-ordered or even church-ordered executions, the goal was to protect the lives of the citizens by dispatching permanently those who were guilty of violating what were assumed to be the ultimate boundaries on humanity.  This extreme punishment was justified as the only way that could guarantee that these victims would never violate life again.

Even in religious persecutions, it will be argued, lives were snuffed out because those in authority determined that the continued existence of heresy or heretics would lead people astray and thus violate the ultimate sacredness of life.  So as dreadful and wrong as this inquisitional behavior now seems to have been to the enlightened people of today, it could still be argued, my critics will say, that this behavior was nonetheless deemed to have been done in the service of affirming life’s sacredness.  One cannot therefore suggest, they will say, that these illustrations could be properly used to pretend that human beings have the right to take their own lives under any set of circumstances.

Suicide, they contend, is always wrong, always a violation of the holiness of life and of the God who is the Source of Life.  It is an interesting but unconvincing argument.  Its weakness is best seen, however, when these same religious people play what has traditionally been their favorite and final trump card.  The Bible condemns suicide in any form, they assert.

The most amazing thing about people who seek to end an argument by quoting the authority of the Bible is that most of these quoters are woefully ignorant of the content of the Bible itself.  I have discovered in my life that no one is a strict biblical literalist, not even Jerry Falwell or Pat Robertson.  They are all what I would call ‘selective literalists.’  They simply ignore those parts of the biblical text that have become inoperative or inconvenient.  They quote only those portions of the text which, they assume, buttress their position.  It is their attempt to say ‘if you disagree with me, you are really disagreeing with God.’  Yet history has not treated this religious power play kindly.

Edit: Several refeerences to debunked biblical references , slavery, Galileo etc       

While the Bible does appear to be generally negative about suicide, it does not seem to condemn those who take somebody else’s life.  That appears to be true even with the commandment ‘Thou shalt not kill’ as part of its legal code.

If you read the Bible carefully, you will discover that this book prescribes the death penalty for such crimes as worshiping false gods, for being disobedient, for talking back to or cursing your parents, for being a medium, a wizard, or a witch, for committing adultery, and even for having a sexual affair with your mother-in-law.  Since few people ever quote this verse about one’s mother-in-law, probably because they cannot imagine anyone being guilty of such an act, I share with you that the text is found in Leviticus 20:14.

If life is too sacred for one to seek release from it under any circumstances, does it not also become too sacred to have it taken away by another?

I, as a Christian, believe that life is sacred, that it is the ultimate gift of God.  Because I hold this belief, I am committed to living every moment that I am given as deeply, richly and fully as I can.  But both the times in which you and I live and the shape of our consciousness in many areas of life have changed dramatically through the ages.  Human knowledge has expanded enormously, which means that “new occasions teach new duties,” as the poet James Russell Lowell once observed.**  I today can no longer just quote the wisdom of antiquity as a passive observer of life.  It is not enough just to be a committed Christian; I must also take seriously what it means to be a citizen of the 21^st century.

I am the beneficiary of a vast revolution in scientific and medical thinking.  I possess a reservoir of data that was not available to the people who authored the Bible.  This is the gift of the modern world to me.  I have watched life expectancy expand remarkably.  I live in a world of quadruple heart bypasses, chemo and radiation therapy, laproscopic surgical procedures and organ transplants, PSA tests and pap smears, miracle drugs and incredible life-support systems.  My grandfather died of pneumonia.  It was before the development of penicillin.  I have had two diseases which I do not believe my grandparents would have survived.

I live in a privileged part of the world and in a privileged generation.  I rejoice in all of these human achievements.  But let there be no mistake about what is happening.  These stirring achievements represent human beings taking on the power we once ascribed only to God.  We have, by our own knowledge and expertise, put our hands on the decisions about life and death.  We can not now refuse to engage these decisions at the end of our own lives.  We have pushed back the boundaries of death inexorably.  We have enabled this generation to live in a way that previous generations could never have imagined.  We have watched human life actually evolve to where it must accept God-like responsibilities.  The time has come to celebrate that, not to hide from it in the language of piety.

What I see the religious community doing today is to tremble in the face of our own human audacity and to seek to hide from the responsibility inherent in our own human achievements, none of which we would be willing to surrender.  Why else would we hesitate before this final boundary called death?  Why would we resist so vigorously the reality that now we must take a hand in our death decision?  When medical science expands the boundary and the quality of life, Christians do not complain.  We, rather, rejoice because we believe it affirms our conviction that life is holy.

It is one thing, however, to expand life and it is quite another to postpone death.  When medical science shifts from expanding the length and quality of life and begins simply to postpone the reality of death, why are we not capable of saying that the sacredness of life is no longer being served?

What happens to both our courage and our faith?  Is a breathing cadaver, with no hope of restoration, an example of the sacredness of life?  I do not think so!  Do we human beings, including those of us who claim to be Christian, not have the right to say ‘that is not the way I choose to die?’  I believe we do!

Is death really the enemy as St. Paul once stated?  On that definition, so much Christian thinking has been based.  Well, let it be said by a bishop of the church:  St. Paul was wrong!  He was wrong here and in several other places.  I often wonder how it was that the words of this man ever came to be called “The Word of God.”  When Paul said “I hope those who bother you will mutilate themselves,” was that the word of God?  Paul was a child of his era responding to his presuppositions and living with his prejudices.  They are not mine.  I prefer to think of death not as an enemy but as a friend, even a brother, as St. Francis of Assisi once suggested.  The time has therefore come, I believe, for Christians to embrace death not as an enemy to be defeated, but as an aspect of life’s holiness to be embraced.  Death is life’s shadow.  It walks with us through the entire course of our days.  We embrace death as a friend because we honor life.  I honor the God of life whom I serve by living fully.  I do not honor this God by clinging to a life that has become an empty shell.

            I do not honor life when I fail to see that death and finitude are what gives life its precious quality.  Death is not punishment for sin, as Paul also once suggested and as classical Christianity has long maintained.  Death is an aspect of life, a vital aspect that gives life its deepest flavor, its defining sensitivity.

Someone once observed that ‘death rings the bell on all procrastination.’  It is because life is finite, not infinite, that we do not postpone the quest for meaning indefinitely.  It is because of the presence of death with us on our life’s journey that we do not fail to take the opportunity to say ‘I love you,’ to invest ourselves in primary relationships, to do what needs to be done to build a better world now.  Death says you do not have forever to make a difference.  Death is what gives conscious life its uniqueness.  Remove death from life and life becomes enduring boredom, an endless game of shuffleboard.  We make life precious by embracing the reality of death, not by repressing it or denying it.  Our present burial customs of making up the faces of the deceased so that they look natural and using artificial grass to cover the dirt of the grave rise out of the fear of our mortality, not out of our affirmation about the wonder and beauty of life.

I, for one, want to live my life by wringing every ounce of joy out of every moment that I am given.  I want to expand my life to its fullest extent.  That is the way that the sacredness of life is affirmed.  I want to drink deeply of life’s sweetness.  I want to scale life’s heights and plumb its depths.  I want to do all I can do to affirm life and, yes, to postpone death at least until life’s quality has been so compromised that it is no longer life as I believe God created it.  Then I want to embrace death as my friend, my companion who has walked with me from the first moment I was born.

I want to live my days surrounded by those I love, able to see my wife’s smiling face, and to experience the joy and vitality of my children and grandchildren.  But when those realities begin to fade away, then I want to leave this world, and those I love, with a positive vision.  I want them to see in me one who lived and loved deeply and well, until living and loving deeply and well was no longer possible.  I want them to remember me as a person who was vital to the end, as one who was in possession of all that makes me who I am, and as one who died well.  My deepest desire is always to choose death with dignity over a life that has become either hopelessly painful and dysfunctional or empty and devoid of all meaning.

That is the only way I know that would allow me to honor the God in whose image I believe I was created.  That is the way I want to acknowledge the relationship I have had with God, which has grown from a dependent and immature one into the maturity of recognizing that to be human is to share with God in the ultimate life and death decisions.  That is how I hope and expect to celebrate both life’s holiness and life’s Creator.  That does not seem to me to be too much to ask of either my faith or my government.

I think this choice should be legal.  I will work, therefore, through the political processes to seek to create a world where advance directives are obeyed and where physicians will assist those, who choose to do so, with the ability to die at the appropriate time.  I also think the choice to do this should be acclaimed as both moral and ethical, a human right if you will, and I will work through the ecclesiastical processes of my church and all the forces of organized religion to change consciousness, to embrace new realities, and to enable Christians and other people of faith to say that we are compelled in this direction because we believe that God is real and life is holy.  The God whom I experience as the Source of Life can surely not be served by those in whom death is simply postponed after real life has departed.

I close with a text, because people seem to believe that a clergyman must have a text for every speech that he or she delivers.  In the 10^th chapter of John’s gospel, these words are attributed to that Jesus of Nazareth, who stands at the center of my faith tradition.  Articulating his purpose, He says:  “I have come that you might have life and that you might have it abundantly.”  It is that abundant life which is the ultimate gift of God.  I walk into the Source of that abundant life in the way I live.  I also want to walk into the Source of that abundant life in the way I die.

I see no contradiction between the faith I cherish and principles for which the Hemlock Society stands.  I embrace your conclusions with the hope that you will listen to, heed, and welcome the pathway of faith that I have traveled that enables me to stand at your side today and to claim you as my ally in the struggle to discover the ultimate meaning of life itself.  I am a Christian whose faith has led him to champion the legal, moral, and ethical right that I believe every individual should be given—to die with dignity and to have the freedom to choose when and how that dignified death might be accomplished.

A contrary view from the medical profession in Psychiatric Times that refers to the Dutch experience

Commentary: The Case Against Physician-Assisted Suicide: For the Right to End-of-Life Care by Herbert Hendin, M.D.

Euthanasia is a word coined from Greek in the 17th century to refer to an easy, painless, happy death. In modern times, however, it has come to mean a physician's causing a patient's death by injection of a lethal dose of medication. In physician-assisted suicide, the physician prescribes the lethal dose, knowing the patient intends to end their life.

Giving medicine to relieve suffering, even if it risks or causes death, is not assisted suicide or euthanasia; nor is withdrawing treatments that only prolong a painful dying process. Like the general public, many in the medical profession are not clear about these distinctions. Terms like assisted death or death with dignity blur these distinctions, implying that a special law is necessary to make such practices legal--in most countries they already are.

Compassion for suffering patients and respect for patient autonomy serve as the basis for the strongest arguments in favor of legalizing physician-assisted suicide. Compassion, however, is no guarantee against doing harm. A physician who does not know how to relieve a patient's suffering may compassionately, but inappropriately, agree to end the patient's life.

Patient autonomy is an illusion when physicians are not trained to assess and treat patient suffering. The choice for patients then becomes continued agony or a hastened death. Most physicians do not have such training. We have only recently recognized the need to train general physicians in palliative care, training that teaches them how to relieve the suffering of patients with serious, life-threatening illnesses. Studies show that the less physicians know about palliative care, the more they favor assisted suicide or euthanasia; the more they know, the less they favor it.

What happens to autonomy and compassion when assisted suicide and euthanasia are legally practiced? The Netherlands, the only country in which assisted suicide and euthanasia have had legal sanction for two decades, provides the best laboratory to help us evaluate what they mean in actuality. The Dutch experience served as a stimulus for an assisted-suicide law in Oregon--the one U.S. state to sanction it.

I was one of a few foreignresearchers who had the opportunity to extensively study the situation in the Netherlands, discuss specific cases with leading Dutch practitioners and interview Dutch government-sponsored euthanasia researchers about their work. We all independently concluded that guidelines established by the Dutch for the practice of assisted suicide and euthanasia were consistently violated and could not be enforced. In the guidelines, a competent patient who has unrelievable suffering makes a voluntary request to a physician. The physician, before going forward, must consult with another physician and must report the case to the authorities.

Concern over charges of abuse led the Dutch government to undertake studies of the practice in 1990, 1995 and in 2001 in which physicians' anonymity was protected and they were given immunity for anything they revealed. Violations of the guidelines then became evident. Half of Dutch doctors feel free to suggest euthanasia to their patients, which compromises the voluntariness of the process. Fifty percent of cases were not reported, which made regulation impossible. The most alarming concern has been the documentation of several thousand cases a year in which patients who have not given their consent have their lives ended by physicians. A quarter of physicians stated that they "terminated the lives of patients without an explicit request" from the patient. Another third of the physicians could conceive of doing so.

An illustration of a case presented to me as requiring euthanasia without consent involved a Dutch nun who was dying painfully of cancer. Her physician felt her religion prevented her from agreeing to euthanasia so he felt both justified and compassionate in ending her life without telling her he was doing so. Practicing assisted suicide and euthanasia appears to encourage physicians to think they know best who should live and who should die, an attitude that leads them to make such decisions without consulting patients--a practice that has no legal sanction in the Netherlands or anywhere else.

Compassion is not always involved. In one documented case, a patient with disseminated breast cancer who had rejected the possibility of euthanasia had her life ended because, in the physician's words: "It could have taken another week before she died. I just needed this bed."

Since the government-sanctioned Dutch studies are primarily numerical and categorical, they do not examine the interaction of physicians, patients and families that determines the decision for euthanasia. Other studies conducted in the Netherlands have indicated how voluntariness is compromised, alternatives not presented and the criterion of unrelievable suffering bypassed. A few examples help to illustrate how this occurs:

A wife, who no longer wished to care for her sick, elderly husband, gave him a choice between euthanasia and admission to a home for the chronically ill. The man, afraid of being left to the mercy of strangers in an unfamiliar place, chose to have his life ended; the doctor although aware of the coercion, ended the man's life.

A healthy 50-year-old woman, who lost her son recently to cancer, refused treatment for her depression and said she would accept only help in dying. Her psychiatrist assisted in her suicide within four months of her son's death. He told me he had seen her for a number of sessions when she told him that if he did not help her she would kill herself without him. At that point, he did. He seemed on the one hand to be succumbing to emotional blackmail and on the other to be ignoring the fact that even without treatment, experience has shown that time alone was likely to have affected her wish to die.

Another Dutch physician, who was filmed ending the life of a patient recently diagnosed with amyotrophic lateral sclerosis, says of the patient, "I can give him the finest wheelchair there is, but in the end it is only a stopgap. He is going to die, and he knows it." That death may be years away but a physician with this attitude may not be able to present alternatives to this patient.

The government-sanctioned studies suggest an erosion of medical standards in the care of terminally ill patients in the Netherlands when 50% of Dutch cases of assisted suicide and euthanasia are not reported, more than 50% of Dutch doctors feel free to suggest euthanasia to their patients, and 25% admit to ending patients' lives without their consent.

Euthanasia, intended originally for the exceptional case, became an accepted way of dealing with serious or terminal illness in the Netherlands. In the process, palliative care became one of the casualties, while hospice care has lagged behind that of other countries. In testimony given before the British House of Lords, Zbigniew Zylicz, one of the few palliative care experts in the Netherlands, attributed Dutch deficiencies in palliative care to the easier alternative of euthanasia.

Acknowledging their deficiencies in end-of-life care, the Dutch government has made an effort to stimulate palliative care at six major medical centers throughout the country in the past five years in the hope of improving the care of dying patients. Simultaneously, initiatives for training professionals caring for terminally ill patients were undertaken. More than 100 hospices were also established.

Even if the Dutch experience suggests that engaging physicians in palliative care is harder when the easier option of euthanasia is available, for a significant number such training has become a welcome option. A number of physicians who received the training have publicly expressed their regrets over having previously euthanized patients because they had not known of any viable option. Such expressions of regret would have been inconceivable five years ago.

Developments of the last five years may be having a measurable effect. In contrast to a 20% increase in euthanasia cases from 1991 to 1995, the number of euthanasia cases in 2001 was no greater than in 1995. If education of Dutch doctors by palliative care instructors is successful, a gradual reduction in the number of cases of assisted suicide, euthanasia and involuntary euthanasia cases will be a measure of that success.

Oregon is experiencing many of the same problems as the Netherlands but is not doing nearly as much to combat them. Although legalizing only assisted suicide and not euthanasia, Oregon's law differs from the Dutch in one respect that virtually builds failure into the law.

Intolerable suffering that cannotbe relieved is not a basic requirement for assisted suicide in Oregon as itstill is in the Netherlands. Simply having a diagnosis of terminal illness with a prognosis of less than sixmonths to live is considered a sufficient criterion. This shifts the focus from relieving the suffering of dyingpatients desperate enough to consider hastening death to meeting statutory requirements for assisted suicide. It encourages physicians to go through the motions of offering palliative care, providing serious psychiatric consultation or making an effort to protect those vulnerable to coercion.

In Oregon, when a terminally ill patient makes a request for assisted suicide, physicians are required to point out that palliative care and hospice care are feasible alternatives. They are not required, however, to be knowledgeable about how to relieve either physical or emotional suffering in terminally ill patients. Without such knowledge, the physician cannot present feasible alternatives. Nor are physicians who lack this knowledge required to refer any patient requesting assisted suicide for consultation with a physician knowledgeable about palliative care.

The inadequacy of palliative care consultation in Oregon was underscored by a survey of Oregon physicians who received the first 142 requests for assisted suicide since the law went into effect. In only 13% of cases was a palliative care consultation recommended, and we do not know how many of these recommendations were actually implemented.

Two Oregon cases illustrate how compromised the offer of palliative care can become. The first patient, referred to by her physician as "Helen," was the first known case of physician-assisted suicide in the state. The case was publicized by the Compassion in Dying Federation, an advocacy organization for physician-assisted suicide.

Helen, an Oregon woman in her mid-80s, had metastatic breast cancer and was in a home-hospice program. Her physician had not been willing to assist in her suicide for reasons that were not specified and a second physician refused on the grounds that she was depressed.

Helen called Compassion in Dying and was referred to a physician who would assist her. After her death, a Compassion in Dying press conference featured a taped interview said to have been made with Helen two days before her death. In it, the physician tells her that it is important she understand that there are other choices she could make that he will list for her--which he does in only three sentences covering hospice support, chemotherapy and hormonal therapy.

Doctor: There is, of course, all sorts of hospice support that is available to you. There is, of course, chemotherapy that is available that may or may not have any effect, not in curing your cancer, but perhaps in lengthening your life to some extent. And there is also available a hormone which you were offered before by the oncologist, tamoxifen, which is not really chemotherapy but would have some possibility of slowing or stopping the course of the disease for some period of time.

Helen: Yes, I don't want to take that.

Doctor: All right, OK, that's pretty much what you need to understand.

A cursory, dismissive presentation of alternatives precludes any autonomous decision by the patient. Autonomy is further compromised by the failure to mandate psychiatric evaluation. Such an evaluation is the standard of care for patients who are suicidal, but the Oregon law does not require it in cases of assisted suicide.

Physicians must refer patients to licensed psychiatrists or psychologists only if they believe the patients' judgment is impaired. A diagnosis of depression per se is not considered a sufficient reason for such a referral. However, as with other individuals who are suicidal, patients who desire an early death during a serious or terminal illness are usually suffering from a treatable depressive condition. In any case, studies have also shown that non-psychiatric physicians are not reliably able to diagnose depression, let alone to determine whether the depression is impairing judgment.

Not all of the factors justifying a psychiatric consultation center on current depression. Patients requesting a physician's assistance in suicide are usually telling us that they desperately need relief from their mental and physical suffering and that without such relief they would rather die. When they are treated by a physician who can hear their desperation, understand their ambivalence, treat their depression and relieve their suffering, their wish to die usually disappears.

The psychiatric consultation as envisioned by the Oregon law is not intended to deal with these considerations. It is only concerned with the more limited issue of a patient's capacity to make the decision for assisted suicide to satisfy the requirement of informed consent. The story of Joan Lucas, whose suicide was also facilitated and publicized by Compassion in Dying, points out how such a gatekeeper role encourages seeking psychological or psychiatric consultation to protect doctors, rather than patients.

Lucas, an Oregon patient with amyotrophic lateral sclerosis, attempted suicide. Paramedics were called to her house, but her children sent them away, explaining, "We couldn't let her go to the ambulance. They would have resuscitated her."

Lucas survived her attempt and was assisted in suicide 18 days later by a physician who gave interviews about the case to an Oregon newspaper on condition of anonymity. He stated that after talking with attorneys and agreeing to help aid Lucas in her death, he asked her to undergo a psychological examination. "It was an option for us to get a psychological or psychiatric evaluation," he told the newspaper. "I elected to get a psychological evaluation because I wished to cover my ass. I didn't want there to be any problems."

The doctor and the family found a cooperative psychologist who asked Lucas to take the Minnesota Multiphasic Personality Inventory (MMPI). Because it was difficult for Joan to travel to the psychologist's office, her children read the true-false questions to her at home. The family found the questions funny, and Joan's daughter described the family as "cracking up over them." Based on these test results, the psychologist concluded that whatever depression Joan had was directly related to her terminal illness--a completely normal response. His opinion is suspect, the more so because while he was willing to give an opinion that would facilitate ending Joan's life, he did not feel it was necessary to see her first.

Data from patient interviews, surveys of families of patients receiving end-of-life care in Oregon, surveys of physicians' experience and data from the few cases where information has been made available suggest the inadequacy of end-of-life care in Oregon.

Oregon physicians have been given authority without being in a position to exercise it responsibly. They are expected to inform patients that alternatives are possible without being required to be knowledgeable enough to present those alternatives in a meaningful way, or to consult with someone who is. They are expected to evaluate patient decision-making capacity and judgment without a requirement for psychiatric expertise or consultation. They are expected to make decisions about voluntariness without having to see those close to the patient who may be exerting avariety of pressures, from subtle to coercive. They are expected to do all of this without necessarily knowing the patient for longer than 15 days. Since physicians cannot be held responsible for wrongful deaths if they have acted in good faith, substandard medical practice is encouraged, physicians are protected from the con-sequences, and patients are left unprotected while believing they have acquired a new right.

The World Health Organization has recommended that governments not consider assisted suicide and euthanasia until they have demonstrated the availability and practice of palliative care for their citizens. All states and all countries have a long way to go to achieve this goal.

People are only beginning to learn that with well-trained doctors and nurses and good end-of-life care, it is possible to avoid the pain of the past experiences of many of their loved ones and to achieve a good death. The right to such care is the right that patients should demand and the challenge that every country needs to meet.

Dr. Hendin is professor of psychiatry at New York Medical College and medical director of the American Foundation for Suicide Prevention. He is the author of Seduced by Death: Doctors, Patients, and Assisted Suicide and co-edited The Case Against Assisted Suicide: For the Right to End-of-Life Care with Kathleen Foley, M.D. His work was cited by the U.S. Supreme Court in its decision that there was no constitutional right to assisted suicide.

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Some stuff on the industrialization of death

 http://dir.salon.com/books/sneaks/1998/07/29sneaks.html

Stephanie Zacharek reviews 'The American Way of Death Revisited' by Jessica Mitford

July 29, 1998 | Muckraking journalist and ballbreaker extraordinaire Jessica Mitford died in 1996, just as she was putting the finishing touches on this new version of her 1963 expos of the funeral industry, "The American Way of Death." The original book, a classic not just because of its fearless exposure of scams and shams but also because Mitford's dry, witty style is a sheer pleasure to read, was ripe for updating. The book, which became a much-talked-about bestseller -- even Robert Kennedy had it in mind when he found himself faced with the sad task of arranging his brother's funeral -- raised the hackles of U.S. funeral directors with its scorching revelations of massively inflated prices and high-pressure selling of unnecessary products and services. Mitford's book raised awareness among the public and set in motion numerous reforms, but as this update shows, many of the old problems remain uncorrected, and new ones have popped up as well.

Some of Mitford's new tales from the crypt are enough to knock the pennies right off your eyes. In the past 35 years, cremation, long considered a less-expensive solution to the full-nine-yards burial (and thus an option funeral directors have historically tried to discourage) has become more common -- and accordingly, funeral directors (even the "honest" ones) have figured out ways to charge more for it. Although embalming is not, contrary to popular belief and to the claims of many morticians, required by law, funeral directors continue to assume that it's what all Americans want. And foregoing embalming will not help the savvy funeral shopper to save money, as most funeral directors charge the same amount to refrigerate remains as they do to embalm them. The most chilling of the new material profiles the large conglomerates, like the nefarious Service Corporation International (SCI), a huge organization that's been stealthily buying up small funeral homes across the United States as well as in Britain and Australia. The company centralizes those businesses' operations to cut costs, only to hike up consumer prices extravagantly -- all in the service, the company claims, of offering a wider range of "options" to the bereaved. After itemizing all the elements of a $20,000 SCI funeral, Mitford dryly observes that "readers can check out the SCI facilities in their own communities via 1-800-CARING."

Then, of course, there are all those nifty details that enthralled readers the first time around: a not-for-the-faint-of-heart embalming procedural (which several editors tried to excise when Mitford was originally shopping the book around) and a catalogue of oddball burial accouterments like the Fit-a-Fut Oxford, an adjustable shoe for the deceased (which, she notes, fell apart rapidly after her teenage son wore them around the house). But Mitford's sheer gutsiness remains the biggest delight of all. Doing a little undercover work, she calls an undertaker, posing as a woman whose aged aunt is rapidly nearing death. A simple cremation is all she wants, with no service and no casket. The funeral director responds calmly (and falsely) that it would be "illegal" for him "to enter into such an arrangement." "In that case, perhaps we could take a body straight to the crematorium in our station wagon?" she asks earnestly. Her goal then, as now, was to provoke, to call the bluff of people and organizations who might otherwise take consumers to the cleaners. It's wonderful to think that with "The American Way of Death Revisited," Mitford is still breaking balls from beyond the grave.

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A piece on green burials from Conscious Choice

http://www.consciouschoice.com/environs/dusttodust1203.html

Dust to Dust?

A Greedy Death Industry Prevents Our Return to Nature

by Martin Kaufman

Conscious Choice, March 1999

Oak Grove International's "Summerfield" line is fairly typical of the caskets American funeral directors sell these days; it's available in nine rich colors, with plush interior velvet trim. And because it's made of thick, reinforced fiberglass, it won't biodegrade, "thereby protecting the body from the environment, and the environment from the body, for countless tomorrows," as the Michigan-based company claims on its web page.

And Doric's "Lydian" burial vault seems a fine receptacle to encase one's Summerfield. Weighing "as much as an automobile," as the company exclaims, this baby is made of special concrete bonded to reinforced plastic and a third layer of copper. It's designed to resist 5,000 pounds of pressure per square inch. With an inner liner of fiber-reinforced Acrylonitrile Butadiene Styrene (the same material used in NFL football helmets), and a butyl seal, the unit nicely resists penetration by soil, air, water, and other things that might "contaminate" the dead body. Who wouldn't want to be buried in such beautiful, sturdy, protective containers?

Ken West, for one. A founding member of England's Association of Nature Reserve Burial Grounds, he finds the idea "totally repulsive." Barbara Butler, for another. The proprietor of England's "Green Undertakings" funeral shop, she is "absolutely appalled" by the idea. "Our jaws dropped when we read about this. It's so alien to anything we do here I can hardly talk about it. Our belief is that the most humane and natural thing is to let bodies return to the earth and be recycled into trees, grass, and shrubs."

West and Butler are part of a small but growing "green burial" movement that's providing an illuminating British counterpoint to the lavish American burial. Few Americans even think to question the prevalent practice of isolating the corpse from the earth with strong, nonbiodegradable containers. Perhaps that's because the death industry has worked hard to give such highly profitable practices the cloak of respectability. Indiana-based Batesville Casket, the U.S.'s largest coffin maker, intones on its web page, "The urge to keep our loved ones protected and safe is fundamental to all of us. No wonder so many families are comforted by the ability to protect their loved ones with the Batesville Monoseal protective casket...designed to prevent the entrance of grave site elements (like water, soil and air) into the casket." Asked whether it was ecologically sound to "protect" the dead body as opposed to letting it return to earth naturally, Batesville spokesperson Chris Feeney emphasized that the company simply was providing a product that consumers demand. But Father Henry Wasielewski, co-founder of the Interfaith Funeral Information Committee, insists such products "are continually being designed and pushed upon families by the funeral industry worldwide to increase profits."

Together, the concrete vault or grave box (required by almost all U.S. cemeteries) and today's stainless steel, bronze, copper, and fiberglass caskets make for one imposing fortification. Indeed, since defending the corpse from nature seems to be the industry's goal, someone might legitimately ask why they bother installing it in the earth at all (embedding the body in a cube of Lucite would preserve it better and make an interesting heirloom coffee table). Even wooden caskets buried without a vault have sometimes remained intact for over 300 years. Encapsulated in an airtight vault, they can undoubtedly last much longer.

Then there's that other nagging matter --because mahogany, commonly used to make "prestige" caskets, grows sporadically, loggers destroy 28 trees for every mahogany tree they harvest, according to Rainforest Action Network. With between 275,000 and 300,000 hard and softwood caskets made in the U.S. each year, according to the Casket and Funeral Supply Association, and assuming Batesville's claimed 150 to 225 board feet of wood per casket to be fairly standard, the American death industry buries between 41 and 67 million board feet of mostly hardwood per year, and that doesn't even include the wood used in particleboard caskets. Naturally, this takes its toll on forests here as well as in the Amazon.

England's green burial movement, spearheaded by the London-based Natural Death Centre, has spawned over 80 nature reserve burial grounds in the U.K., with 40 more planned. In these cemeteries, people are buried in a shroud or biodegradable coffin of wicker or cardboard or other simple material. Instead of a headstone, a tree is planted over the grave. West, who runs the Carlisle Cemetery in northwest England, says people take comfort in knowing their bodies will decompose and become part of the cycle of life. "'From death is created life,' they often tell me," West comments. The U.K.'s green cemeteries also serve as habitats for many endangered animals.

Another thing they don't do in green burial is embalming, or "packing people with poison," as Butler describes it. In The American Way of Death, Jessica Mitford offered a vivid description of embalming, and blasted the practice as just another way funeral directors turn a profit. Mitford cited a pathologist who said it ultimately turns the corpse into a "repugnant, moldy, foul-looking object." But embalming does at least enable Oak Grove to advertise its fiberglass caskets as "100 percent environmentally friendly." That's because they contain the formic acid from formaldehyde embalming fluids and keep it from getting in the groundwater.

Lisa Carlson, author of Caring for the Dead, says it's common for funeral directors to misinform people that embalming is required by law, but in fact no state requires it for the first 24-72 hours after death, and even after that, every state but Minnesota allows the alternative of refrigeration.

In Britain, over a dozen companies sell inexpensive, biodegradable burial enclosures ranging from cloth body bags to wicker burial stretchers to cardboard coffins. In the U.S., where the whole industry is geared toward luxury caskets, you can find a cardboard coffin, but it isn't easy. Many funeral directors don't carry these less profitable items, and many cemeteries won't accept them, or, if they do, will insist it be encased in a vault or grave box.

When someone announces a new woodland burial ground in the U.K., the community rallies to support them, according to West. When Ken Ulrich tried to open several green burial grounds in the U.S. a few years ago, a different group rallied -- the Montana funeral directors. After Ulrich started promoting his inexpensive green burial sites, the Montana Board of Funeral Services, comprised mostly of funeral directors, got the legislature to change the burial laws to prohibit such endeavors. Where previously a Montanan could bury anyone he or she wanted on private land, the new regulations decreed one could only bury one's family, so what might have been the U.S.'s first green burial grounds remains nothing more than a vision.

Ulrich got interested in green burial after helping disinter bodies for a cemetery relocation in 1975 . Most of the coffins were still intact, and the bodies, deprived of the cleansing effect of soil, were pretty frightful. "If people could see a video of what goes on in those boxes they wouldn't want to be put in one" he says. Ulrich adds that white funeral directors have even gone onto Montana reservations and talked many Native Americans into buying "protective" steel luxury caskets. Considering that the Natives' heritage has always been one of simple green burial, it would seem some "salesperson of the year" plaques are needed over in the Big Sky State.

Is cremation an ecological alternative? Nicholas Albery, Natural Death Centre director and an editor of The New Natural Death Handbook, writes, "anyone with green pretensions should think twice about cremation," which pollutes the atmosphere "with dioxin, hydrochloric acid, hydrofluoric acid, sulphur dioxide and carbon dioxide."

The green burial movement reminds us of something Americans have been conditioned to forget: that humans are part of nature. Ecological planner Ted Buehler of Vancouver, B.C. writes, "By denying our own bodies the opportunity to return to the earth, we have fundamentally severed our spiritual and material relationship with the biosphere." Buehler adds, "Because we do not accept that our bodies are part of the natural cycling of the ecosphere, we may find it easier...to ignore the maintenance of the ecosphere." Which, it might be added, is precisely what we're doing.

Until a green burial movement gets under way in the U.S. -- one powerful enough to stand up to the machinations of the death industry -- options will remain very limited for Americans who want to return to earth when they die. They can be buried on their own rural land, which, according to Lisa Carlson, is legal in most states. Or they can have their remains shipped to a British green cemetery.

But don't fret. In case neither scenario is practical, Batesville offers optional "nature scene" panels inside their caskets, enabling the dead to at least gaze upon the nature from which they're being kept.

An abridged version of this article appeared in E, The Environmental Magazine, Nov/Dec 1998.