6
On Death and Dying Elisabeth K\l=u"\bler-Ross, MD (Discussant) Stanford Wessler, MD, and Louis V. Avioli, MD (Editors) Dr. J. Russell Little, Chief, Di- vision of Infectious Disease, the Jewish Hospital of St. Louis and Associate Professor of Medicine and Microbiology, Washing- ton University School of Medicine: Our guest this morning is Elisabeth K\l=u"\bler-Ross, MD. Dr. Ross has be- come something of a celebrity since the feature story in Life magazine (Nov 21, 1969, p 36) concerning her and her work and the appearance of her recent book entitled On Death and Dying.1 The book provides a fas- cinating account of an experiment in teaching and therapy concerned with the emotional problems of seriously ill and dying patients. We have decided to dispense with the traditional case presentation today even though Dr. Ross could discuss any of our hospi- talized patients with a terminal dis- ease. Instead we shall turn over the entire hour to her discussion of her approach to the emotional problems of dying patients. Dr. Elisabeth K\l=u"\bler-Ross, Medi- cal Director, South Cook County Men- tal Health and Family Services, Chi- cago Heights, 111: I was asked this morning why this topic on death and dying has taken such a long time to come into public awareness. Dying and dignity have been with us for as long as there has been mankind. Why is it now that we have to give semi¬ nars and workshops on death and dy¬ ing? Has it taken us all these decades to begin to be aware that we are fi¬ nite and that we have to treat dying patients? Psychiatric Basis I believe I shall talk like a psychia¬ trist for about five minutes and try to explain what death means and what the fear of death really represents. In terms of the unconscious, we cannot conceive of our own death. This is very important to understand. I be¬ lieve that it shall happen to every¬ body in this room, but not to me. If I am forced to conceive of my own death, then I can only conceive of it as a malignant intervention from the outside. I cannot possibly conceive of dying of old age at home in my own bed. If I have to die, in my uncon¬ scious, I can only conceive of it as being killed. I am not afraid of death per se, but rather the destructive cat¬ astrophic death that hits me from the outside when I am not prepared. Per¬ haps the most complicated thing to understand is that I cannot differ¬ entiate between the wish and the deed. In the Bible it says somewhere that to lust after your neighbor's wife is as bad as actually doing it. In terms of my reality, testing this is actually absurd. I can have all sorts of fan¬ tasies of what I would like to do, but as long as I don't do it, that is satis¬ factory. In terms of my unconscious that is not acceptable. If you under¬ stand this, then you can see what is relevant and what is important to un¬ derstand, especially in the death of a parent of a young child. Little children have a peculiar con¬ cept of death. They regard death not as a permanent happening, but as a temporary happening. Every normal 4- or 5-year-old child who is angry at mommy wishes mommy to drop dead. That is very normal behavior. Chil¬ dren think of it when they are angry, when they feel small and impotent and helpless, and they wish mommy would drop dead only to make her get up again when they are hungry and they want a peanut butter-and-jelly sandwich. The trouble is that the little 4- or 5-year-old boy may really lose his mother by death, separation, or divorce. He then feels that he has actually contributed to her death. This thinking shows that he cannot yet differentiate between his wish to kill mommy and whether he has ac¬ tually done it. If we understand this, then we appreciate many of the com¬ plications of dying patients who sometimes, decades later in their old age, moan and groan and cry and have a lot of somatic complaints which we cannot understand medi¬ cally. When we talk to these people, we see that they have a peculiar sense of guilt; they feel that they have com¬ mitted a crime and they have to be punished before they die. These pa¬ tients suffer far beyond our medical understanding. Our Death-Denying Society Why is dying different now? People have the same kind of unconscious thoughts and fantasies that they had years ago. What has changed, I think, is our society, which has become in¬ creasingly a death-denying society. Half of our patients now die in hospi¬ tals, as compared to 50 years ago when people died at home in a famil¬ iar environment with a little bit of chicken soup instead of transfusions, with their families around them in¬ stead of interns, residents, and labo¬ ratory technicians. People who are dying in a hospital are attached to several pieces of monitoring equip¬ ment and we, as physicians, pay a lot of attention to these gadgets. Some¬ times we feel very uncomfortable when a dying patient looks at us and would like to ask a question in regard to dying or to some unfinished busi¬ ness or to fears and fantasies. In Switzerland, where I am originally from, there is no embalming. They do not have drive-in funeral homes such as we are beginning to have in the United States where you drive up in your sports car, look through a glass window, sign a guest book, and take off. All of this is an attempt to deny that people die. We have a society where we deep freeze people and promise at high cost to defrost them in 50 or 100 years. We have had ques¬ tions from widows about whether they are eligible for social security, or if they are allowed to get married From the Department of Medicine, the Jewish Hospital of St. Louis, and Washington Univer- sity School of Medicine, St. Louis. Reprint requests to 216 S Kingshighway, St. Louis 63110 (Dr. Wessler). at SUNY Stony Brook on October 28, 2010 www.jama.com Downloaded from

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Page 1: On Deathand Dying

On Death and DyingElisabeth K\l=u"\bler-Ross,MD (Discussant) Stanford Wessler, MD, and Louis V. Avioli, MD (Editors)

Dr. J. Russell Little, Chief, Di-vision of Infectious Disease,the Jewish Hospital of St.

Louis and Associate Professor ofMedicine and Microbiology, Washing-ton University School of Medicine:Our guest this morning is ElisabethK\l=u"\bler-Ross,MD. Dr. Ross has be-come something of a celebrity sincethe feature story in Life magazine(Nov 21, 1969, p 36) concerning herand her work and the appearance ofher recent book entitled On Deathand Dying.1 The book provides a fas-cinating account of an experiment inteaching and therapy concerned withthe emotional problems of seriously illand dying patients. We have decidedto dispense with the traditional casepresentation today even though Dr.Ross could discuss any of our hospi-talized patients with a terminal dis-ease. Instead we shall turn over theentire hour to her discussion of herapproach to the emotional problemsof dying patients.Dr. Elisabeth K\l=u"\bler-Ross,Medi-

cal Director, South Cook County Men-tal Health and Family Services, Chi-cago Heights, 111: I was asked thismorning why this topic on death anddying has taken such a long time tocome into public awareness. Dyingand dignity have been with us for aslong as there has been mankind. Whyis it now that we have to give semi¬nars and workshops on death and dy¬ing? Has it taken us all these decadesto begin to be aware that we are fi¬nite and that we have to treat dyingpatients?

Psychiatric BasisI believe I shall talk like a psychia¬trist for about five minutes and try toexplain what death means and whatthe fear of death really represents. Interms of the unconscious, we cannot

conceive of our own death. This isvery important to understand. I be¬lieve that it shall happen to every¬body in this room, but not to me. IfI am forced to conceive of my owndeath, then I can only conceive of itas a malignant intervention from theoutside. I cannot possibly conceive ofdying of old age at home in my ownbed. If I have to die, in my uncon¬scious, I can only conceive of it asbeing killed. I am not afraid of deathper se, but rather the destructive cat¬astrophic death that hits me from theoutside when I am not prepared. Per¬haps the most complicated thing tounderstand is that I cannot differ¬entiate between the wish and thedeed. In the Bible it says somewherethat to lust after your neighbor's wifeis as bad as actually doing it. In termsof my reality, testing this is actuallyabsurd. I can have all sorts of fan¬tasies of what I would like to do, butas long as I don't do it, that is satis¬factory. In terms of my unconsciousthat is not acceptable. If you under¬stand this, then you can see what isrelevant and what is important to un¬derstand, especially in the death of aparent of a young child.Little children have a peculiar con¬

cept of death. They regard death notas a permanent happening, but as atemporary happening. Every normal4- or 5-year-old child who is angry atmommy wishes mommy to drop dead.That is very normal behavior. Chil¬dren think of it when they are angry,when they feel small and impotentand helpless, and they wish mommywould drop dead only to make her getup again when they are hungry andthey want a peanut butter-and-jellysandwich. The trouble is that thelittle 4- or 5-year-old boy may reallylose his mother by death, separation,or divorce. He then feels that he hasactually contributed to her death.This thinking shows that he cannotyet differentiate between his wish tokill mommy and whether he has ac¬tually done it. If we understand this,

then we appreciate many of the com¬plications of dying patients whosometimes, decades later in their oldage, moan and groan and cry andhave a lot of somatic complaintswhich we cannot understand medi¬cally. When we talk to these people,we see that they have a peculiar senseof guilt; they feel that they have com¬mitted a crime and they have to bepunished before they die. These pa¬tients suffer far beyond our medicalunderstanding.

Our Death-Denying SocietyWhy is dying different now? People

have the same kind of unconsciousthoughts and fantasies that they hadyears ago. What has changed, I think,is our society, which has become in¬creasingly a death-denying society.Half of our patients now die in hospi¬tals, as compared to 50 years agowhen people died at home in a famil¬iar environment with a little bit ofchicken soup instead of transfusions,with their families around them in¬stead of interns, residents, and labo¬ratory technicians. People who aredying in a hospital are attached toseveral pieces of monitoring equip¬ment and we, as physicians, pay a lotof attention to these gadgets. Some¬times we feel very uncomfortablewhen a dying patient looks at us andwould like to ask a question in regardto dying or to some unfinished busi¬ness or to fears and fantasies. InSwitzerland, where I am originallyfrom, there is no embalming. They donot have drive-in funeral homes suchas we are beginning to have in theUnited States where you drive up inyour sports car, look through a glasswindow, sign a guest book, and takeoff. All of this is an attempt to denythat people die. We have a societywhere we deep freeze people andpromise at high cost to defrost themin 50 or 100 years. We have had ques¬tions from widows about whetherthey are eligible for social security, orif they are allowed to get married

From the Department of Medicine, the JewishHospital of St. Louis, and Washington Univer-sity School of Medicine, St. Louis.Reprint requests to 216 S Kingshighway, St.

Louis 63110 (Dr. Wessler).

at SUNY Stony Brook on October 28, 2010 www.jama.comDownloaded from

Page 2: On Deathand Dying

again. In this sense, people use denialthat their next of kin are really dead.Joseph Matthews has provided a

beautiful description of the death-denying society and if you will bearwith me I will read just one page togive you an even better description ofwhat I mean by a death-denyingsociety:To symbolize the dignity of the father's

death the family decided to clothe the fa¬ther in a pine box and rest him in the rawearth. Having been told that casketsranged from one hundred to several thou¬sand dollars, they asked for the one hun¬dred-dollar coffin."What $100.00 coffin?" replied the as¬

tonished undertaker."Why, the one you mentioned.""Oh no, caskets begin at $275.00.""Did you not mention a $100.00 coffin?"The persistent wishes of the familywere met and the pine box was se¬lected. Later Matthews describes hisexperience after his father had beenprepared by the undertaker:My father was 92. In his last few years

he had wonderfully put chiseled wrinkles. Ihadhelped toputthemthere.His cheeksweredeeply sunken, his lips pale: he was an oldman. There is a kind of glory in the face ofan old man, but not so with the strangerlying there. They had my papa looking likehe was 52. They had put cotton in hischeeks and had erased the best wrinkles.His lips were painted. He looked ready tostep before the footlights of a matinee per¬formance. I fiercely wanted to pluck outthe cotton, but was afraid. At least themake-up could come off. I called for alcoholand linens and a very reluctant morticianbrought them to me. I began the restora¬tion. As the make-up disappeared, thestranger grew older. He never recoveredthe looks of his 92 years, but in the end theman in the coffin became my papa.Later he describes his experience at

the cemetery:I say I smelled that fresh earth, but

there was none to be seen. What I did seewas difficult to believe. I mean that greenstuff. Someone had come before us and cov¬ered that good raw earth, every part of it,with green stuff. Every scar of the gravewas concealed under simulated grass justas if nothing had been disturbed here—justas if nothing was going on here, just as ifnothing were happening. What an offenseagainst nature, against history, againstpapa, against us, against God.It goes on, but I shall stop here.

You have to ask yourself why we haveto conceal the grave, why we have tocover up that good earth with artifi¬cial greens, why we have to pretendthat nothing is happening. You must

understand that the fear of death isthe fear of a catastrophic happening,a catastrophic destructive force thatdestroys us from the outside.Then we also have to look at death

in the past and death in the present.In the old days death also came as acatastrophic happening in the form ofepidemics. It erased populations ofwhole villages, but it was not man-made. In times of war you faced yourenemy face-to-face and had a chanceto kill rather than to be killed. Thesethings have changed. In the past, epi¬demic disease was the killer; now wehave developed antibiotics, vaccines,all sorts of things that can master theold types of death. In our fear ofdeath we have also created weaponsof mass destruction. We now haveweapons that you cannot defendyourself against physically. We can¬not see, smell, or hear an enemy and Iam thinking of chemical warfare,bacteriological warfare, and means ofmass destruction, all of which areman-made. We are afraid, we areguilty, and still hope "it shall happento thee and to thee but not to me!" Ithink this is the reason why thissociety, especially at this time, isusing such a mass denial. We live inthe illusion that, since we have mas¬tered so many things, we shall be ableto master death too.

Physicians' Reactionsto Dying Patients

How does this affect you as physi¬cians? How does this affect our pa¬tients? I had a glimpse of this Alkyears ago through a chance happen¬ing. Some theology students knockedat my door and asked me if I wouldhelp them to write a paper on a crisisin human life. Several had chosen dy¬ing as the biggest crisis man had toface, but they were stuck. They didnot know how to do research on dy¬ing. You cannot experience it, youcannot verify it. I suggested that oneway that you could really collect somedata and understand it was by get¬ting close to dying patients and ask¬ing them to be our teachers. I had asimilar experience some years earlierwhen I tried to understand what it islike to be schizophrenic. I spent twoyears in the state hospital where I satwith schizophrenic patients and askedthem what is it like, how did it start,what are the changes, what does it

feel like, until I had the feeling that Ireally knew what it was like to be aschizophrenic from the patient's pointof view. Because I had this goodlearning experience, I recommendedthe same kind of methods to my the¬ology students.I promised them that I would inter¬

view dying patients, and that as theywould become more comfortable dur¬ing the interviews, I would drop outand let them continue the dialogueuntil they had enough data. A weeklater, after asking numerous people,there was not a single dying patientin that 600-bed hospital! There wasjust nobody dying. When I pushed, Iwas given all sorts of rationalizations.These patients were too sick, tooweak, too tired, or "they don't feellike talking." Occasionally I was toldthat if I talked to patients about dy¬ing they would jump out the window.It was extremely difficult during thefirst year. It took an average of tenhours a week to get permission to seea single terminally ill patient. In allfairness I must say that I was new atthe University of Chicago, and so thephysicians had no assurance that Iwould not cause trauma or that Iwould be tactful. But this same kindof resistance I have also seen in Colo¬rado; it was not associated with theUniversity of Chicago alone. Whenwe finally obtained permission to seea patient, he was an old man who wasready to talk. He put his arms out andsaid please sit down now. I told him,"No, not now," because my studentswere not with me. My needs as ateacher prevented me from seeing hisneeds. I described to the students thenext day his outstretched arms, hispleading eyes, how he emphasized thenow. The next day when I came withthe students he was in oxygen, hecould hardly talk, and the only thinghe was able to say was, "thank youfor trying anyway." He died abouthalf an hour later. This was our firstand most difficult patient, because ofour own feelings, which prevented usfrom really listening to his needs.We decided we would meet in my

office and talk to each other aboutwhat we called our "gut reaction"—how we really felt about this type ofwork, about seeing these kinds of pa¬tients, and about the reception wewould get from the patients. One ofthe students, who was as white as a

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bed sheet, said, "Oh, I'm not afraid ofdeath," and the other students ques¬tioned him as to why he was so pale.They wanted to know why he was theonly one who denied his fear. He saidthat he had been the hospital studentchaplain in a state hospital the yearbefore and that he had been assignedto a ward where a patient was dying.He had walked into the ward and said(I am quoting him almost verbatimnow): "I yelled at the peak of myvoice, 'God is love, God is love' untilthe patient dropped dead." This washis proof that he was not afraid! I toldhim that when I was a little girl inSwitzerland, I had to go down to thewine cellar to get a bottle of wine andthe darker the cellar became, thelouder I yodelled. That experience re¬minded me of him.What I am trying to say is that af¬ter each patient interview, we triednot only to listen to the patient, butalso to ourselves, to our own reac¬tions; we tried to get to know our¬selves better. In these after-inter¬view discussions, we analyzed how wereally reacted-when we had some

tender thoughts, and when we hadsome difficulties. We also learned tobecome more sensitive, not only tothe patients, but to ourselves and toour own needs. Dr. Wall describedbeautifully in his book on the dyingpatient how a social worker was facedfor the first time with a dying patientand what her reactions were. He saidevery time she entered the patient'sroom, she felt strong feelings of guilt.She was going to live, while he, of her own

age, was going to die. She knew he wantedto talk to her, but she always turned thetalk into a little joke or into some evasivereassurance, which had to fail. The patientknew and she knew because he saw herdesperate attempts to escape: he took pityon her and kept to himself what he wantedto share with another human being. So hedied and did not bother her.We have interviewed more than

400 patients during the last fouryears. We have seen many times thatpatients want to talk and that theywould very much like to share theirthoughts with another human being.It is very difficult sometimes to try todo that. When we come in, we tellthem that we would like them to beour teacher, that we would like toknow what it is like to be very sick,and sometimes we use the word dy¬ing. Many of our patients respond

like we are opening flood gates. Theyshare with us things that we werenever aware of.I think the most important thingthat we have learned, and I am sum¬

marizing a bit now, is that all our pa¬tients know when they are terminallyill, whether they have been told ornot. To me this is a very consolingthought. They not only know whenthey are seriously ill, but patients caneven tell you the approximate day oftheir death, right up to their actualdemise. They will tell you goodbyeand you know this is the last time youwill see them. This is also true forchildren. We asked our patients thequestion that we are most oftenasked, and that is, would the patienthave liked to be told. Two-fifths ofour patients had never been told, al¬though they knew it anyway after awhile. Our patients usually told usthat they would like to be told if it isserious, but not without hope. Hopefor the healthy and the living is avery different thing. We tend to for¬get that sometimes. Hope for the liv¬ing is always associated with cure,treatment, and, if that is not possible,a prolongation of life and perhaps re¬lief of pain and suffering. When a pa¬tient says to you, "I hope the researchlaboratories work on a new drug andI am the first one to get it and bysome miracle I am going to walk outof this hospital," that is hope prior tothe final stage. When the same pa¬tient then, suddenly, a few days later,looks at you and says, "I hope my chil¬dren are going to make it," then youknow that this patient has changednot to the kind of hopes that dyingpatients express, which are very rea¬sonable, very appropriate, and notunrealistic. It is not wise at this pointto tell them, "Oh, come on now, youare going to make it, you are going toget well." I think at this point weshould support them, encourage them,and reinforce the hope that the pa¬tient expresses.

Stages Between Awareness ofSerious Illness and Death

Patients go through five stages be¬tween their awareness of serious ill¬ness and their death, if they have aminimal amount of time available.Most patients respond with shock anddenial when they are told that theyhave a serious illness. This may last

from a few seconds to a few months.Most of the patients we interviewedhad dropped their denial; only three,less than 1% maintained it to the veryend. Patients begin to see, when theyare seriously ill, that the familycomes in and does not know what totalk about and becomes estranged.Someone may come in with a red faceand smile. Others may change theirconversation a bit; they may talkmore about a triviality because oftheir discomfort. Patients acceptquickly that things are not at all per¬fect. When the patient cannot main¬tain his denial anymore, he will be¬come difficult, nasty, demanding,criticizing; that is the common stageof anger. How do you respond to onewho complains and criticizes every¬thing you do? You may tend to with¬draw and not deal with him anymore.What else can you do? You can avoidhim, you can stick the needle in a bitfarther—not consciously-but whenyou are angry you touch patients dif¬ferently. We can measure some ofthese responses. In California someinvestigators measured the responsetime between patients ringing forthe nurse and the nurse actually com¬ing into the room. They showed thatpatients beyond medical help, termi¬nally ill patients, had to wait twice aslong as other patients for the nurse torespond. This behavior should not bejudged; it should be understood. It isvery difficult to remember that mem¬bers of the helping professions, whowork hard all day, may have a diffi¬cult job coming into the dying pa¬tient's room. In the first place, theprofessional is uncomfortable; second,she is worried that the patient mayask how long he has to live or all sortsof unpleasant questions, and then, ifthe nurse does something for the pa¬tient, he may begin to criticize her.The nurse comes in and shakes thepillow, and the patient says, "I justwanted to take a nap, can't you leaveme alone." When you don't shake thepillow, the patient remarks, "whycan't you ever straighten up my bed."Whatever you do is criticized. Suchpatients are very difficult to manageand the families suffer tremendouslybecause, when they come in and visit,they are always too early, too late, orthere are not enough people, or toomany people. Someone has to dosomething for these patients, to facil-

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itate life for everybody concerned. Itis important to understand that thesepatients are not angry with the nurseor the family. The more vibrant thenurse is when she comes into the pa¬tient's room, the more energetic sheis, the more she is going to getthrough to the dying patient. In away she should be able to accept theanger as a compliment, because whatthe nurse reminds the patient of isfunctioning health, ability to go towork, to go for a coffee break, allthose things that the patient is aboutto lose. Because the nurse reminds thepatient of all these things, and be¬cause he is desperately attempting todeny that he is dying, he becomesangry and says in effect, "Why me?"But he is also asking, "Why couldn'tthis happen to Joe Blow or somebodyelse?" If the nurse can put fuel intothe fire, if she can help him to expressthis anger, if she can permit him toask the question, "Why me?" withoutthe need to answer it, then she willhave a much more comfortable pa¬tient almost immediately. We inter¬viewed a young patient who was dy¬ing. She was in my office and lookedcompletely numb and I asked her ifshe felt like screaming. She looked asif she were on the verge of an explo¬sion. She asked if we had screamingrooms in hospitals. I said no, we hadchapels. "No, this is wrong," she said,"because in chapels we have to prayand be quiet and I need just to do theopposite. I was sitting out in the caryelling at God and asking him, 'Whydid you let this happen to me?' " I en¬couraged her to express this in my of¬fice and to cry on my shoulders. Theynever scream as loud as they thinkthey will.If you can help patients express the

question, "Why me?" you can helpthem express their rage and anger;then your patients become more com¬fortable and ring for the nurse lessoften and stop nagging and com¬

plaining. Sometimes they even

quickly become much more comfort¬able patients and we wonder whathas happened to them.That is often when they reach the

stage of bargaining. In the bargain¬ing they may pray for another year tolive; they would donate their kidneysor their eyes, or they may becomevery good people and go to church ev¬ery Sunday. They usually promise

something in exchange for extensionof life. Some of the promises are notmade to God, but to someone on thehospital staff. We had a woman whoasked to be relieved of some of hertremendous pain for one day so thatshe would not be dependent on injec¬tions around the clock. She said shewould just love to go home one moreday and the reason for this was thather favorite son was getting married.We tried everything, and finally wewere able to teach her self-hypnosisto relieve her pain. She left the hospi¬tal and looked like a million dollars.She attended her son's wedding. Iwas curious about patients who onlyask for one single day; how do theyreact when their bargaining time isup? It must be extremely difficult. Iwaited for her, she saw me in the hall¬way and she was not happy to see meat all. Before I could ask her a ques¬tion, she said, "Dr. Ross, don't forget,I have another son." This is the mosttypical part of bargaining. Promisesare never kept; patients say, "If Icould live just long enough for mychildren to go through high school,"and then they add college, and thenthey add I just want a son-in-law, andthen they would like to have a grand¬child, and it goes on and on. If, in thedenial stage, they say "No, not me,"then in the anger stage they say,"Why me," and in the bargainingstage they say, "Yes me, but." Whenthey drop the "but," it is, "Yes me."Then the patient becomes very de¬pressed.There are two kinds of depression

and it is important to understand thetwo different kinds. The first type is areactive depression in which the pa¬tient cries when he talks about it, andmourns the losses which he has expe¬rienced. Later on he becomes quietand depressed. When you enter hisroom, you see a man crying and hedoesn't say what he is crying about. Itis very difficult to accept such behav¬ior over a long period of time. Whatdoes the physician do when he entersthe room of a patient who is crying,especially if it is a man? This is onearea in which men have a much moredifficult time than women. The physi¬cian may be quiet. Many physiciansgo into the room and give the patienta pat on the back and say, "Come on,it is not so bad." We try to cheer themup because, as physicians, we cannot

tolerate crying patients very well.The reason our tolerance is low is notbecause of the patient; it is rather be¬cause of our own inability to toleratedepressed patients over a long time.Sometimes we request a psychiatricconsultant, which is not appreciatedby most patients. It is an inappro¬priate request because the patient'sresponse represents normal, not ab¬normal, behavior.If I were to lose one beloved person,I would be allowed to mourn and ev¬eryone here would respect that asbeing socially acceptable. But whohas the courage to face not only theloss of one person, but the loss of ev¬erybody he has ever loved? It is athousand times more sad, and takesmuch more courage to face. What weshould be trying to do is to tell our pa¬tients that it takes a man to cry andthat we mean it completely and will¬fully. We should help them expresstheir grief, which, in fact, is a prepa¬ratory grief. It is not mourning andgrieving over things lost; rather, it isa grieving and mourning over im¬pending loss. The patient is begin¬ning to separate himself from thepeople that he has to leave in the nearfuture. This is what we call prepara¬tory grief. If the physician can helphis patient through a preparatorygrief, the patients will ask once moreto see the relatives, then the children,and at the very end, only one belovedperson, who is usually husband orwife and, in the case of children, nat¬urally, the parents. This is what wecall the stage of decathexis, when thepatient begins to separate; when hebegins to feel no longer like talking;when he has finished all his unfin¬ished business; when he just wantsthe companionship of a person who iscomfortable, who can sit and hold hishand. It is much more important thanwords in this final stage. If the physi¬cian can help the patient express hisrage and his depression and assisthim sincerely through the stage ofbargaining, then most patients willbe able to reach the stage of accept¬ance. It is not resignation—there is abig difference. Resignation, I think, isa bit like giving up. It is almost a de¬feat. A stage of acceptance is almostbeyond any affect. It is the patientwho has said, "My time comes veryclose now and it is all right."A woman who was always hoping

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for a miracle drug that would cure hersuddenly looked with an almostbeaming face and said, "You know,Dr. Ross, a miracle has happened." Isaid, "What miracle?" and she re¬

plied, "The miracle that I am ready togo now and it is not any longerfrightening." This is the stage of ac¬ceptance. It is not happy; the time israrely ever right. People almost al¬ways want to live, but they can beready for death and they are not pet¬rified anymore. They have been ableto finish their business.Even children, depending on age,

can show these stages, but to muchless of an extent than adults. Verysmall children are only afraid of sepa¬ration. They have no real concept ofdeath yet. When they are a bit older,the added fear is one of mutilation.Later on they see death as a manwhom they run from at night—a badman; they want the lights on at night,as they are afraid of darkness. Lateron they realize that death is not atemporary but a permanent happen¬ing. They begin to see it after the ageof 9 years or so as a biological force,almost like grown ups. Sometimeschildren talk about death and dying,too—not in words, but in pictures. Alittle boy tried to paint what he feltlike. He drew a huge tank and infront of the barrel was a tiny, littlefigure with a stop sign in his hand.This to me represents the fear ofdeath, the fear of the catastrophic,destructive force that comes upon youand you cannot do anything about it.If you can respond to him by saying itmust be terrible to feel so tiny andthis thing is so big, he may be able toverbally express a sense of smallnessor impotence or rage. The next pic¬ture he drew was a beautiful bird fly¬ing up in the sky. A little bit of its up¬per wing was painted gold. When hewas asked what this was, the boy saidit was the peace bird flying up intothe sky with a little bit of sunshine onits wing. It was the last picture hepainted before he died. I think theseare picture expressions of a stage ofanger and the final stage of accept¬ance.

CommentDr. Little: I wonder if I could urge

you to tell a story that you told yes¬terday afternoon concerning the re¬action of the nurse in encouraging

patients to achieve a state of accept¬ance of death.Dr. Ross: Many people wonder

whether all patients should die in astate of acceptance. Somebody onceasked me that, and I said you try toelicit the patient's needs. One nursein the audience arose very angrily. "Ihave been angry and a rebel all mylife and I hope I can die that way."My answer to her was, "I hope theylet you die that way and not sedatedto keep you 'nice, quiet, and peace¬ful.' " It is very important to remem¬ber that the patients who have useddenial all their lives may want denialand may die in a stage of denial. Weshould not project our own valuesonto the patient. The "stages of dy¬ing" affect not only terminally ill pa¬tients. You can apply these lessons toeveryday living.If a man loses a girlfriend, he may

deny it at first; then he becomesangry at the other suitor. Then hesends her some flowers to bargain,and if he cannot get what he wants,he becomes depressed. Eventually, hereaches the stage of acceptance, whenhe finds another girlfriend.Dr. Jerome D. Cohen: Were thereany differences between the patientswho were told by their physiciansabout their fatal illness as opposed tothose who were not? What guidelineswould you recommend to physiciansin determining whether the patientshould be told or not?Dr. Ross: I could tell after a while

whose physician the patient was bythe degree of comfort experienced bythe patient. I did not even have to askanymore. I do not believe the variableis whether or not they have been told.The variable is how comfortable thephysician is in facing the dying pa¬tient. We had, at our institution, onesurgeon who was particularly effec¬tive in this area. I think that he con¬veyed to them verbally or nonverballythe belief that he would stay withthem until the end. The patients wereable to pick this up. It is somethingthat is more important than anythingelse. It is a conviction that the doctoris going to stick it out no matterwhat. He always did that. The pa¬tients knew that, even though therewas no more possible surgery or med¬ical treatment, he would still come tosee them and care for them. Those pa¬tients had it much easier. In fact, we

hardly ever got referrals. We some¬times went to see them because weneeded some "good patients" whowere not troubled all the time. I am infavor of telling patients that theyhave a serious illness because patientsaccept that almost without exception,as long as you always allow for somehope.A Physician: What advice do you

have for the families of patients who.are dying?Dr. Ross: That is only difficult if

the patient or the family lags behindin the stages. We have patients whohave already separated themselvesfrom their relatives. In fact, we havea patient now at the hospital who iswaiting to die. His family has stoppedvisiting him. The nurses are terriblyupset because the wife called up andsaid that if her husband died, theyshould not bother calling during thenight. She would call in the morningto check. This family has already sep¬arated itself and yet the husband isstill alive and very lonely. When Iwent to see him, he expressed a lot ofgrief and asked if I would pray that itwould soon be over. There is nothingmuch that he wants to do. It is moreoften true that the patient hasreached a stage of acceptance and thefamily has not. That is the time whenthe family begins to run around andbeg you for life-prolonging proce¬dures. We have had one difficult casewhere a woman was ready to die. Shehad accepted it and was only con¬cerned that her husband could not ac¬cept it. The husband was busy ar¬ranging for additional surgery, whichwas scheduled for the following Mon¬day. The patient could not toleratethe thought of an additional proce¬dure. She became very anxious anduncomfortable prior to surgery. Shedemanded twice as much medicationfor pain and finally, in the room out¬side of the operating room where shewas prepared, she had an acutepsychotic episode and became para¬noid and screamed, "They are goingto kill me, they are going to kill me."In her psychotic state she kept say¬ing, "Talk to that man, talk to thatman." When I talked with her hus¬band and tried to explain what hadhappened, he said that he wouldrather have as a last memory hisbeautiful, dignified, wonderful wifethan know that she was dying a

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Page 6: On Deathand Dying

psychotic woman. When he was ableto convey to her that he had acceptedand acknowledged the fact that shewas terminally ill and the surgerywas permanently cancelled, she soonbecame nonpsychotic. She lived forabout one week and she even wenthome one more time to help her hus¬band turn the clock back a little bit.We have had three instances so far

where patients used psychotic de¬fenses against artificial and extraor¬dinary life-prolonging procedures.We have had some very traumaticcases where husband and wife couldnot reach the same stage at the sametime. I think a golden rule for us asphysicians is to know enough to stopthe extraordinary measures when apatient has reached the stage of ac¬ceptance. When the patient has comethat far, then I think many of usknow that such interference is nolonger therapeutic, and may onlygratify our own needs.A Physician: Do you ever tell a pa¬tient he is dying?Dr. Ross: You never tell a patient

he is dying; never. You don't have to—you just tell him that he has a seriousillness. You say, "It looks prettygrim," or "It looks pretty bad." Thenyou wait for and answer his nextquestions. He may ask you, "Is it go¬ing to be painful?" "Am I going to bealone?" "How long is this going tolast?" You say you don't know, be¬cause the worst thing that we haveexperienced is people who tell time,for example, people who figure on sixmonths, which is not correct any¬way.A Physician: Have many of your

patients been physicians, and if so,have they presented unusual prob-

lems?Dr. Ross: We have had perhaps six

or seven physicians and about thesame number of dentists. I would saythat they may have maintained thedenial for a bit longer in spite or per¬haps because of a better under¬standing of their diagnosis or of theirillness. I think physicians have itmuch harder. We are trained to heal,to cure, to prolong life, and I thinkmany of us feel that "if a patient dieson us," it is like a defeat or a failure,and so we do not talk about it. Thatmakes it much more difficult. My bighope is that in time we will have moreinterdisciplinary seminars not onlyfor medical students like we have inChicago now as an accredited course,but for sociology students, nursingstudents, social work students, andmembers of the clergy.A Physician: Have you noticed

whether or not the patient's religiousorientation has affected his view to¬ward resignation in the end?Dr. Ross: Not resignation but ac¬

ceptance! I have a peculiar patientpopulation, or at least I tend to thinkso. I have very few really religiouspeople. The few I have-and I meanthose with a deep intrinsic faith-have it much easier, but they are ex¬tremely few. I have an even smallernumber of real atheists who believenothing, and they have it rather easytoo. About 95% are somewhere in be¬tween. They are struggling at the endvery desperately, but they would liketo have the rock of Gibraltar and theyonly have a straw; they would like toenlarge that and get more faith, butit is somewhat too late. Many pa¬tients become more religious in theend, but it is not really effective.

SummaryPsychiatrically it is extremely im¬portant to appreciate that, in termsof the unconscious, we cannot con¬ceive of our own death and that, inaddition, we cannot differentiate be¬tween the wish and the deed. Al¬though people today have the samekind of unconscious thoughts and fan¬tasies about death that other personshad years ago, our society haschanged and has become increasinglya death-denying society. We live to¬day in the illusion that, since we havemastered so many things, we shall beable to master death too.Certain generalizations based oninterviewing more than 400 dying pa¬tients in the past four years can bestated. All patients know when theyare terminally ill, whether they havebeen told or not. Patients usuallystate that they would like to be told ifit is serious, but not without hope.Most, but not all, patients pass

through five stages (denial, anger,bargaining, depression, and accept¬ance) between their awareness of se¬rious illness and their death, whenthey are faced with a potentially fa¬tal illness. The knowledgeable physi¬cian, particularly one who is himselfcomfortable in facing the dying pa¬tient, can help these patients passthrough one or all of these stages byappropriate verbal and nonverbalsupport-particularly the supportengendered by the patient's realiza¬tion that his physician will stay withhim until the end.

Reference

1. K\l=u"\bler-RossE: On Death and Dying. NewYork, Macmillan Publishing Co, 1969.

Metrication: What Is an Are?—Effective January 1973, the present policy for AMA scien¬tific publications for use of a mixture of metric and nonmetric measurements willchange; the 11 journals thereafter will publish measurements only in a modified metricsystem (as described in Vawter SM, DeForest RE: The international metric system andmedicine. JAMA 218:723-726, 1971).In the International System of Units, wherein all measurements are based on the

meter-kilogram-second (MKS) system, the basic unit for area is the square meter(about 20% larger than a square yard). It is used, for example, in building and construc¬tion. Small areas, however, are usually measured in square centimeters.For land surveys, the hectare (about 2.5 acres) is used. One must not confuse an acrewith an are, however; an are is equal to 100 square meters and 100 ares make a hectare.Thus, ares are units of area, and 1 are, the area of a square whose sides are 10 meterslong, is only about 0.025 acre. The unit, are, is pronounced to rhyme with either "chair"or "far."

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