the dying patient_2

the dying patient_2 - 20 Questions and Answers on Death...

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Unformatted text preview: 20 Questions and Answers on Death andr Dying that he wants to believe in a miracle in spite of the fact that from a medical point of view he’s regarded as terminally ill. [ would sit with him and say, “Yes, miracles do sometimes happen" and wait for a while and continue to visit with him so that he has an op portunity to share with you his feelings about his ter- minal illness or his belief that he has been cured. It is not your role, whether you are a member of a helping profession or a family member, to break down a defense. It is your role to help the patient, and if he needs to believe that he is cured, it is cruel and un- therapeutic to tell him there are no such things as miracles. If you do not believe, yourself, that miracles do happen sometimes, you can simply ask him totell _ you more about it. He may even end up convincing you. Over the last eight years we have had several patients who had been given up, and from a medical point of view had no practical chance of recovery, but who are still alive several years after the predicted date of their death. fit have a patient dying now. She’s behaving as if she V}. doesn’t know it or she may be denying it. How can I grind this out? How can I make her comfortabie and what can I talk about? ‘le think it is important that you do not “grind it out." If she appears to be in pain ask her if she has enough pain relief. If she is restless, sit with her and hold her hand and ask her simply, “What can I do to make you comfortable?” The patient will then tell you what her needs are. I think we are always trying to play a ,/ trange guessing game, perhaps pretending to ourselves \ If__ ouddomtknowhowjo he! a that we are all-knowing, omnipotent human beings. silent, simplyjsk. \ \ - e Dying Patient 21 -r ‘She may tell you to get a special friend in or she ray tell you to get a member of the clergy. She may Lant to put her house in order or to make a last will. hese requests tell you that she knows that she is dying. .0“ said at one time that every dying person Should own style of deniai? There are many people who do not deny the reality ' - r .of death. It requires a long working-through process inL- our death denying society, but once_you have faced _your I wn finiteness and have accepted it, you will see that 'e becomes much more meaningful and moreflvaluable. fl is: These people who have truly faced their own finiteness 1' I "Will be much better equipped to help dying patients. I tell them, “I don’t know why you,” but you ma i ask the question the other way around, “Wh noyt -- you}: Since all of us have to face death and dying has It" to happen to any one of us sooner or later. He is really smegma); is it .h.epneninat0 me nowi’ljhiirciifidfli gilt!!! _!§1iSE__.this. question .so_._.thafhg_will thennbemable ‘s. magmas. .__is_ang_e1; and anguish and ventilateth “ Midismakandmhgfleoncema This will gisz ‘} .you cues as to how to help him. "/ . am a terminally iii patient. When I first found out boat my condition I realized that my future had been ill 22 Questions and Answers on Death. and Dying taken away from me. i was very angry. Have yea scen similar feelings? Most of my patients react the same way. They are shocked and they are apgry that their future has been taken-“away, but gradually they realize that they are still living today, that they still have a tomorrow. Be— cause they have a limited time to live, very often they live with more intensitMitbw‘diiferEEt va_1_u_ens_,fla_1_1~d eniglilife nib—lie __p_§_ca_use they do__n§t;_alwaysh for I tomorrow fidjgtftvyear, the way healthy people fifiT'—‘ A patient is crying and states that his physician just told him that he is going to die. A medical. student wonders how to respond to such a patient. It you are comfortable enough to say so, I'would say to him that nobody knowswhen we are going to die, that he is critically ill, but that we are goingtptry (to do everything incur power to. see it. we can give him another chance. If a patient is told that he 15 going to die without being given a glimpse of. hope, this is very cruel and very often the patient gives up and spends his last days or weeks suffering. ' What does the helping pers0n (nurse, doctor, social wanker) do with his own very strong reactions of tears 0r anger when he fears he cannot control himSeif? Sometimes this is the most important reason for avoid— ing the dying patient. Every helping person needs a screaming room-r perhaps a little room beside the nursing station, the hospital chapel, or any other room where you can cry, where you can curse, where you can express your the Dying Patient 23 _' where you can disappear with a friend and tell asty things about your co-workers who aggravated on or prevented you from staying with a needy pa» “ant. If we had some facilities like screaming rooms, .3 staff could ventilate their own feelings and would a be much more able to keep in a certain frame- rk of control when they are back on the ward. This specially true of people who work in intensive care ,_ ts where it is very difficult to work for eight or nine 'ours without letting your feelings g0 occasionally. iii": (1: J." ii'ger can also be cruel. How? A patient who is angry and nasty and diSplaces all _s discontentment and envy onto his friends and rela- yes and the staff can be very difficult for the people ¥ho take care of. him. If you are faced with such a atient, you try to discover whether he has a reasonable I" ification for his anger. If, for example, the food is iserabie, then you talk to the dietician to improve the lined. If what he is going through is the true stage of lager in the process of dying where he asks, “why% __ c?” then you try to tell him thatygg__c_a_n__ap reciate "is an er and his envy and that ifjpllvere in his“\ osition ou wggidjgwgngry, too. In other words, you; _tp put fuel in the fire and let him ventilate hisi , u1' ' ithou_t__maki_ng'hi_m feel guilty, without givingl ' 7‘ the—"feeling that you are “abQYQ. him.” or belittling A few extra minutes spent with three extra—diffi/ flit patients can work wonders. They will call for the I-rses less often, the family is more content, and the ients are more comfortable. 24 Questions and Answers on Death and Dying How do you help resolve the panic and sense of not enough time of a young couple where one has a slowly progressive chronic neurological illness and they both feel there is not enough time in the day or year left to do all that they want to do with their lives together? The sense of panic and not enough time is a tempo- rary anxiety. They will soon discover that being to— gether cannot be counted in hours, weeks, or months, but in the depth of their encounter. They may hear of _ _. _fi....... _ _. ._-.-—-" eihfi'TEbdples who lose a partner in a sudden death and they will learn to appreciate the blessing of having had some extra time together and using it to its fullest. How do you help a person who is angry toward God? We are so shocked and this is seen almost as a personal attack. I would help him to express his anger toward God because God is certainly great enough to be able to accept it. Why do some patients use 1'yzgr'r'ij‘hnity? Patients who are terminallyill are not any different Ifrom healthy people.‘JProfanity can be used as a strong 1' weapon to deal with your own impotent rage. How do yoa “help” the family when they have become abusive of the nursing stafi‘? You know their anger and anxieties, but they don’t. The fact that you write the word “help” in quotes already reflects that you have some ambivalent feel~ ings toward them. I wender if you really want to help them or if you‘d rather keep them quiet. If you can I. he Dying Patient 25 "arn'not to take this abuse and insult personally, but 3 them as a troubled, anguished family in a great sunnoil, then you may be able to help them ventilate their anguish and anger and they will become much more bearable to the nursing staff. Ideally, the family culd be able to turn to somebody outside of the nursing staff, preferably a minister or social worker, who can help not only the family, but indirectly also phe nursing staff who goes through this difficult period. You said to one of your patients looking at his get~well _\.cards on the wall, “Aren’t you angry?” it worked out _ obviously; but weren’t you projecting your OWn anger I and not making a statement about where the patient .' was? I' Yes, I shared with him my owu gut reactions of rage grid anger at the wall covered with phony get-well— soon cards when everybody who. sent him a card . Obviously knew he was in the final stages of his life - and totally unlikely ever to recover. Because I was able to share my owu reactions, “I hit the nail on the - head,” enabling him to share his own rage and anger With me, obviously feeling better afterward. BARGAINING—DEPRBSSION AND GRIEF USUALLY FOLLOW When a patient has been in one stage of dying and returns to an earlier stage does this mean that the earlier stage was not resolved? NO- I hope that I am making it clear that patients ».do not necessarily follow a classical pattern from ghe Stage of denial to thg fig; 9: angerI to bargaining, to ‘- '_ 'epression and acceptance. Most of my patients have V la 1 K 26 Questions and Answers on Death and Dying exhibited two or three stagessimultaneously and these do not always occur in the same order. his, however, important to recognize that when _a patienthas reached '5 slimline, true stage _o.f.aeeeptance.and he begins to regress, this. is often .. because-\we— do not allow..the patient to let go. We may add unnecessary life-prolong- ing-procedures which the patient does not appremate anymore, or he may have a family member who‘hangs on and makes him guilty for dying on them. Ills 1n th1§ last stage especially that a regression is usually a sign of our inappropriate handling of the patient. This is not true in the other stages. My sister has cancer and she is at the stage of bargain— ing at this time. She speaks freer of the cancer and the treatment. She laughs about dying “when the time comes” and has a big desire for one more trip in two years. Can a dying person go through one or more stages without it showing to those near and dear to them? Your sister seems to be able to talk about it com- fortably and to express a wish that she is still able to make another trip in two years. She seems to be in good spirits and I think you should be grateful that she is able to talk about it openly. People can go through a stage of bargaining without an outsider seeing it, but I would regard it as difficult to hide a genuine stage of anger or depression. What do you say to a patient who is sick but not ter- minally iii and says, “I want to die tonight”? I would say to him that I have felt this way some- times, but I wonder what makes him think about it. _ e Dying Patient 2? is will convey to him that all of us think about this easionally. I’m more curious about what stimulated - is statement. "" Sometimes patients have a premonition of impend- death and will share this with you if you listen to m, Don’t stop them with statements like “oh, don’t 51k like that!” " difficult pastoral situation i have presentiy is how to {tip a patient who has had a catastrophic threatening ions illness which we aii considered fatal and who " cceedea’ in coming to a degree of acceptance of the minence of death, but then discovered that instead 9? dying his sentence is to face severe invalidism. Sometimes facing death is easier than facing a long ife with a serious handicap. If you have been success- in your pastoral counseling helping this patient to' ccept the imminence of his death, it is most likely hat with some additional help, you will also be able to 'elp him face a longer life with limited functioning. All f our patients who have multiple sclerosis, or are araplegic, or are blind had to go through these stages. ___is___sgmeti_mes more difficult and. requires more time Q.._219_<_3__Ezpt.__t_his__ limited...life functioning thanto. fase eath, is-at least an end to the suffering, O -=How do you dent with the person who does not want 'to live? It is too general a question. There are people who certainly do not want to live and I can empathize with them. There are patients who are totally paralyzed from 'head to toe who are aphasic, which means that they Mcannot say one single word, who cannot read and write 28 Questions and Answers on Death and Dying anymore, who just lie in bed for years staring at you, fully conscious, tube-fed, and not able to communicate with the outer World except through their looks. The way they look at you they may be able to smile, they may be able to cry, and that is the only way they can have any contact with the outer world. Would you like to live this way? I have cancer patients who have liVed for months and months with tremendous pain, unable to move because of their bone metastasis, dependent upon relatives to turn them around, to feed them, to take care of their needs. If they go to a hospital they have the additional burden of horrendous expenses, which the family is barely able to pay. They know the outcome and they, 'too, do not want to live any longer. Would you like to live this way? I think we have to evaluate each patient. If the patient, under very_u_tid_er_s_tandable t:_i_17“c__i1_m§_tanc_es, egpresses the wish to die _soon, I have-.noaproblems this hope with him. A man was given only one day to live over two weeks ago. His physician had given up and done all he could, he said. Today the man survives and is apparently doing better. The family expected his death, but daesn’t have much courage to face it. They are living on hope. The man does not want to see his wife. He claims everybody upsets him. I think I would be upset too if somebody told me that I had only one day to live. None of our patients :j" would do well if they had been given a specific num— ber of days or weeks for their survival. This is an =irresp0nsible way of communicating with patients be— '-1..,gause we never know whether or not the patient is an lexception to the rule. Many of them have lived far be- ,The Dying Patient 29 yond our medical expectations. This man is probably in tween; he’s not able to live and enjoy himself and __e’s not able to die; he’s angry and everybody around _im upsets him because they are kind. of standing ground waiting for his death to occur and death does not occur- I think somebody who feels comfortable talking with patients like this should go in and visit _r level with him, and say this was a silly statement ,Ihat he had only one day to live. They should then sit together and discuss how he can be helped now that he has recuperated to some degree. He should be en- ..ouraged to use to the fullest whatever time he has. The patient will probably first ventilate some rage and __- anger followed by some statements as to what he wants -' to do with the time he has left. a” .9 I What can we say about the psychiatric patients who feel almost dead. technically dead, without almost any hope for a future, much less a reasonably healthy future? There are many partial deaths. Many patients in state hospitals, many elderly people in nursing homes are vegetating and merely existing but not truly living. This is what I regard as a partial death, especially if the future looks grim, if they have no caring family, if they have no chance of ever leading a normal, func- tioning life. It is up to us, the healthy peOple, to give - these patients a chance so that they can start to live again and not have to look forward to death to release them from their chronic and long and hopeless suffering. _ Every human being has something to give if we would only allow its expression. Wn-w - - . _ _..__ .__,_as=_=.- ===-———-—-——--- ’- _, 30 Questions and Answers on Death and Dying Patients with spinal cord paralysis, hemiplegt'a, ampu- tations. often deseribe themselves as “hal;c dead" or desiring todie. Do your concepts apply to them and if i5, how? What can we do to assist them, especially when it often cannot be determined whether the paralysis will be permanent? The many patients who have to face a paralysis have to come to grips with this tremendous loss. We have seen many Vietnam veterans paralyzed and many of them asked why they were not allowed to die. Many of these young men regard themselves as “half dead.” This__is___a__ve_r_y understandable-reaction and it takes time, patience, love, and endurance to counsel with them and—"to 'help them find some meaning i.n_Illei_r sullering, andLrnost important of all, to show them that even a paralyzed person can live a meaningful life. These patients will very typically go through the stage of shock and denial; they will not believe that they are permanently paralyzed. When it begins to dawn on them that there may be no recuperation they will become very angry and difficult patients. They may bargain with God; they may become depressed, some— times for months, and only if you give them enough assistance will they be able to reach a stage of accept- 31103. t’) I have Jlust worked with a patient who has gone through seven operative procedures for cancer includ— ing a colostomy and is now admitted for “palliative” radiation therapy. She is in a very depressed state and asked, “How would. you feel if you were..me?” What would your answer be? I would most likely say to her that_.I___wgJ__ld_b£_very sagitpo. The Dying Patient 3: Ike stages of dying seem to be analogous to those of 3 suddenly severely handicapped person. Do you have any comments on this concept? I This is true. A loss of any kind will provoke the ammo kind of adjustment reactions that we call “the rages of dying.” 130 most-dying patients lose the fight for life when they ealize they are dying? No. What type of response do you make to a patient who asks, “Why should I? I’m going to die anyway and l retreats. dead"? ' ' Many patients do not want to be pushed doing hings they are not ready to do anymore. A patient who says, “I’m going to die anyway and I wish I were ead” has to be reevaluated. Maybe his suffering is _-_ too much for him to bear; maybe the pain relief is not adequate; maybe nobody really cares about him. A Patient who has hsiptfluasals-psychological. and .:-spiritua1——is usually able to bear it and will be able to Wtfié"6’t’if0f his desperate plea “I wish I were dead.” If all help is given and the patient still talks this way, I " have said, “Yes, I can understand that.” What do you say to someone who says, “I’m no good _ to anybody. Why don’t you first let me die?” The fact that he talks to me proves that he is wrong because his sharing with me what he’s going through will enable me to be a better physician to other terrni— nally ill patients. I feel very comfortable saying that to _ it, “firsuch patients. 32 Questions and Answers on Death and Dying D How do you respond to a terminal patient who says he doesn’t want to get up because he’s going to die anyway-—what’s the use? : Sometimes those patients are right. Ottensaecexpect itowgghjlgm.-9.LLE_-§E1El§illll-lll_l??‘ll‘?lll$s 1 have 566“ v rfi'any critically ill children who were forced to attend 4 school, to do things that pleased the grown—ups when the child, indeed, needed to decatheet and wean off and wanted to be left in peace. It is important to differ: entiate between .. this kind of healthy weaning.-.ofi_.m the part of the dying patient and a pathologicalfiepres- \Ision where the patient is giving up hope prematurely \/ \_.and does not want to “bother anymore.” With very Ldepressed patients who have given up hope, it helps to let them talk about their sense of futility and hope- lessness. With a patient who is in the process of separa- tion, it is mandatory that We allow him to wean off in order to find his owu inner resources and peace. How do you respond to the dying patient who ex- presses concern for his loved one who will be left alone in this world after he dies? 1 would empathize with him and would ask if there is anything I can do to make it easier for the ones he leaves behind. I would also see if he has finished his unfinished business, if he has written a will, if there are any other financial or other matters that have to be taken care of while he is still capable of doing so. If the family “limps behind” in the stages, I would see if they can receive some counseling to help them faee the reality of the impending death. I The Dying Patient 33 D THE END OF LIFE—HOPEFULLY ACCEPTANCE Have we really been talking about death and dying or about life and living before death occurs? I suspect that reflection on the difference will be rewarding. When I give lectures on death and dying and share with you what we have learned from our dying patients, it is very clear to me that these are lessons for the living. _I_t___is__from._._.our dyingpatientsthgt we learn the. trueualues .of..life, and if. we. could. reach iii; Mw” I Wmmmein our young. age, we would live ' much .mere--—meaningful life, appreciate small things, and have different values. \5 _ _ Oln talking to a dying loved one are you supposed to be honest about your feelings of fears, loss, separation? Can we really stop playing games? Yes, we can. When I visited a dying woman lately with whom I was very close, I told her that in case this was my last visit I wanted her to know that I would miss her terribly. She blurted out, “I should hope so!” The moment she said that she apologized and I laugh— ingly asked her if she really meant to be a phony in our last being together or if we hadn‘t learned long ago to be honest together. This was followed by a big embrace and we then talked very Openly and frankly about what it was going to be like when she was no longer around. When I left, she said this was the best meeting we ever had together. i’ have a patient with terminal cancer with complete bilateral block. Her husband requested, "Just keep her comfortable.” We sedate her when she becomes rest- 34 Questions and Answers on Death and Dying less, otherwise she’s quite lethargic from the uremia. She apparently has visual hallucinations, i.e., she has seen her deceased mother, a sister, her only son. She asks only to sleep and states she is going home on Tuesday. Psychologically I think I am prepared. Do you really believe she senses something we don’t know? 'I don’t know if she senses something you don’t know because you know that she is going to die soon, and if my guess is right, she will probably die on Tues— day. Patients know not only that they are dying, but many of our patients are able to convey to us when they are going. to die and most of the time they are quite accurate‘ilf she already relates to her late mother, deceased sister,“ and only son who died before her, it is very likely that she has already decathected and weaned herself off from the relationships in this world and is prepared to dial Does the patient express a diflerent sense of dignity when he resigns himself to his fate rather than accepting it? Patients who are in the stage of acceptance show a very outstanding feeling of equanimity and peace. There is something very dignified about these patients, while people in the stage of resignation are very often indignant, full of bitterness and anguish, and very often eitprcss the statements, “What’s the use”; “I’m tired of fighting." It’s a feeling of futility, of uselessness and lack of peace which is quite easily distinguishable from a genuine stage of acceptance. Are you implying that it makes no difi‘erence how you interpret the meaning of death for yourself and others _, The Dying Patient 35 = so long as you have some way of interpreting it for yourself and that you feel at ease with it? I Peeple see many different meanings in d'eath.‘If l _ they are at peace and comfortable with their own, ll think that is the best we can hepe for. r I have heard that at the end of a dying person’s life, a summary of their whole life flashes before their eyes. Have you heard of this too? Many of my dying patients have relived experiences from their past life. I think this is a period of time when the patient has switched off all external input, when he begins to wean off, when he becomes very introspective, when he tries to remember incidents and pgopleimportanttghimc and. when he ruminates once Ettore about his past life in an attempt to, perhaps, summarize. .-th-c.- saint: of. his lifeand to search for meaning. We found that little significant memories and h‘idinents with loved ones help the patient most in the ,5 ' very final stage of his life. in the recent death of my mother I saw little or no decathexis as you described in your book. Was her separation from us too private for me to see? It is possible that it was too private, but it is also possible that she was in peace and in a stage of acceptance and was so comfortable that she didn‘t need to separate gradually. l have always wondered how a patient knows he is going to die within maybe the next half hour. Have you ever talked with a patient who has told you exactly what he felt in these last moments? 36 Questions and Answers on Death and Dying Many of our patients have been able to tell us the time of their dying. Innumcrable patients have asked us to call family members or wanted to call in a favor— ite nurse to thank her. Many a patient has asked the nurse to comb his hair and put his new shirt on, to make him neat and clean. Then he asks to be left alone for a little while, and when we returned the patient had died. I think this is what we refer tones the :. psychophysiological cues that the patient picksmup. I prior to his death. You said that our goal is not to moge thefigtient tram one stage _to__ano_ther because they may need denial; _ yet yon-talk about the lastustagemaslthgttghlitMKE—Fa 3‘. : go_t_it_—.Ae_sp_e_c_iaiiy with the ..exaniple...o.t_the.dady—4vko pinched her husband’s cheek. You suggested quite l strongly that good counseling coald move her to ac- I‘ceptance before her husband’s death. Please explain this contradiction. l D It may sound as if it were a contradiction and I think it’s a matter of semantics. The ideal would be if both the dying patient and the patient’s family could _ reach the stage of acceptance before death occurs. In that case there is little if any grief work to do though there is, naturally, grief in either case. Liillcllfllr 33> goal,_ however, to push peopl_e__ from one stage__to I ‘anotfl If the patient requires more time in a given stage or if he has no intention of really facing his finiteness, if he prefers to remain in the stage of denial, we do him a better service to allow him to stay in the stage of denial. If a patient has been angry all his life long or was a revolutionary or a fighter, it is much more likely that he will remain in the stage of The Dying Patient 3.3, anger until the moment he dies. If somebody has been a depressed personality and is filled with self—pity and remains this way at the end of his life, it-is very unlikely that he will be cheerful and that he will accept his own dying with a smile on his face and a sense of cquanimity. In these cases _we should not___p.ush digitalis/at to. s.bahavesniae"'inanuer_thsl ratifies our heedfi.‘ We should be available to the should help him to movmd when_heMadm move; and without somemonal help, some pa— tients may have difficulties doing that. 0 How many patients, if any, have you encountered who have reached the last stage of acceptance at the time you had your interviews? I think most of our patients Would reach the stage of accoptance if it were not for the members of the helping professions, especially the physicians, who can- not accept the death of. a patient. If we as physicians have the need to prolong life unnecessarily and to post- pone death, the patient often regresscs into the stage of depression and anger again and is unable to die in peace and acceptance. The second and quantitively more frequent problem is the immediate famin which “hangs on” and. cannot “let 0.” It is ver difficult is???” man—to__ die with peace and equanimity' if he sees the i. turmorl and pain he causes his wife who is not able to reach the stage of acceptance. If we see such a con- spiracy of silence or such a iscrepancy in the stages, the people to help are those who “limp‘behind in the stages.” By this, I mean that We have to help the physician to face it or the wife to face it, and in an Indirect way we will help the dying patient to either '1 remain in the stage of acceptance or to reach it. I 38 Questions and Answers on Death am;l Dying How ineompatibie is aCCeptance of death and the medicaily positive attitude of the will to live, to fight to Stay aiive and get better? Acceptance of death is the most realistic thing that a person can work through since all of us have to die sooner or later. When a patient has accepted the reai- ity of his own finiteness, then he has a much better chance to use ail of his internal energies to help the physician and the treatment team fight to keep him alive. One does not rule out the other, but rather enhances the appreciation of life and the will to live. My parents are over sixty years of age. All their good friends seem. to be dying or dead. When I visit home, my mother talks about not wanting to get old and freebie. She receives gifts and says that I should have the gifts when she is dead. 1 don’t know what to say to my parents about such matters. I think you shouid understand that'it is 'not very pleasant to be getting old and to be losing one’s friends and relatives one by one. It is understandable that many people in our society do not want to get old because they do not have large families who can care for them when they are unable to attend to their own needs. It is not very enjoyable to spend the last years of your life in a nursing home. You can empathize with your mother and try to think now of what you would do if she reaches an old age. If you hearyour mother’s wishes now while she can still think clearly and while you can talk about it at a rather lengthy dis- tance from her anticipated death, things will bedmuch easier tater on. ' ...
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This note was uploaded on 05/18/2010 for the course GENERAL ED UGD 2901 taught by Professor 謝建泉、陶國璋 during the Spring '10 term at CUHK.

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the dying patient_2 - 20 Questions and Answers on Death...

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