Chapter 1

The Dying Patient

The dying patient has to pass through many stages in his struggle to come to grips with his illness and his ultimate death. He may deny the bad news for a while and continue to work "as if he were as well and strong as before." He may desperately visit one physician after the other in the hope that the diagnosis was not correct. He may wish to shield his family (or his family may want to shield him) from the truth.

Sooner or later he will have to face the grim reality, and he often reacts with an angry "why me" to his illness. If we learn to assist this angry patient rather than to judge him -- if we learn not to take his anguish as a personal insult -- he will then be able to pass to the third stage, the stage of bargaining. He may bargain with God for an extension of life, or he may promise good behavior and religious dedication if he is spared more suffering. He will try to "put his house in order" and "finish unfinished business" before he really admits, "This is happening to me."

In the depression stage he mourns past losses first and then begins to lose interest in the outside world. He reduces his interests in people and affairs, wishes to see fewer and fewer people and silently passes through preparatory grief. If he is allowed to grieve, if his life is not artificially prolonged and if his family has learned "to let go," he will be able to die with peace and in a stage of acceptance. (Examples of these stages are described in detail in my book, On Death and Dying, (Macmillan, 1969).

The following questions come from patients and relatives, physicians and nurses, and hopefully allow the reader to identify with the patient and to feel more comfortable when he or she is faced with a similar problem.

TELLING THE PATIENT

When is the time for an attending physician to tell his terminally ill patient of his diagnosis?

As soon as the diagnosis is confirmed a patient should be informed that he is seriously ill. He should then be given hope immediately, and by this I mean he should be told of all the treatment possibilities. We usually then wait until the patient asks for more details. If he asks for specifics I would give him an honest, straightforward answer. I do not tell the patient that he is dying or that he is terminally ill. I simply tell him that he is seriously ill and that we are trying to do everything humanly possible to help him to function as well as he can.

Whose responsibility is it to inform the patient of his terminal illness? The doctor or the minister?

The doctor has the priority, but he may delegate this job to the minister.

Should every patient be told that he is dying?

No patient should be told that he is dying. I do not encourage people to force patients to face their own death when they are not ready for it. Patients should be told that they are seriously ill. When they are ready to bring up the issue of death and dying, we should answer them, we should listen to them, and we should hear the questions, but you do not go around telling patients they are dying and depriving them of a glimpse of hope that they may need in order to live until they die.

What can be done when the doctor refuses to tell the patient about his terminal illness? Do you suggest that someone else tell the patient? If so, who? Can he or she do it even without the doctor's permission?
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No, you cannot do it without the doctor's permission. Unless the physician gives a minister or a nurse, or social worker the explicit request to do his job for him, it is inappropriate to do so unless you are the patient's next-of-kin.

When does the patient begin to die and when, then, does our relationship begin to be one with a dying patient?

In our interdisciplinary workshops on death and dying our relationships started with the hospitalization of the patients who had a potentially terminal illness. I believe, however, that such preparation should start much earlier and that we should teach our children and our young people to face the reality of death. They would then not have to go through all the stages when they are terminally ill and have so little time to deal with unfinished business. You live a different quality of life, as you do when you have faced your finiteness.

One situation which leaves me uncomfortable is when I know a patient has a terminal illness and the family of the patient has not been told. I think it is only lair to know if one is dying. Must we rely on the physician to tell them?

A patient has the right to be told how seriously ill he is and I believe that the family also has to be notified of the seriousness of an illness. It is the physician who has to relay this news to them. If the physician is unable to do so, the patient or the family should then approach other members of a helping profession and ask them. This is usually the chaplain, the priest, the rabbi, or the nurse. If another member of the helping profession is asked directly by the family or the patient, it is his duty to inform the physician of these needs, and, if necessary, ask that the job be delegated.

DIFFICULTIES IN COMMUNICATION

Do you suggest that doctors talk to a patient's family outside the sick room rather than when standing beside the bed of a comatose patient?

I try to teach my medical students, externs and interns, early that comatose patients are often able to hear and are quite aware of what is going on in the room. Since I am very much in favor of being open and honest with critically ill patients, I find no difficulty in the patient's hearing me share with the family the seriousness of the illness. If I have to share something with a family that I do not want the patient to hear, then I would naturally go outside the patient's room, preferably to a private office.

How do you cope with a family who refuses to allow any mention of "it" to their dying relatives?

I try to sit alone with the patient and then he will relate to me what he has not been able to relate to his own family. We then have to spend extra time sitting with the family separately and attempting to help them to deal with the situation which the patient has already faced.

I took care of a terminal cancer patient about two years ago who asked questions like, "How sick am I?"; "Am I going to get well?"; "What's wrong with me?"; "Why doesn't anyone tell me anything?" When l approached the attending physician regarding his patient's needs, he became very upset and asked me, "What do you want me to do, tell her she's going to die?" He had tears in his eyes when he said this. Would you care to comment on this kind of situation?

Yes, I think this is a very caring physician who obviously is involved and who obviously is bothered that this patient is not going to get well. I would express my empathy to him. I would tell him that it must be very hard to take care of patients like this. Then I would very gingerly ask him if it is all right if I talk with her. He may then give you permission to talk with her because he is apparently too upset to do it himself.

You've talked about talking about death, but what do you say, for example, if someone wants to know why he is dying? What do you say?

I tell him that I don't know, and ask him, "What are you really asking me?" The patient will then proceed to say he has worked all his life long, that he was just ready for retirement and why is it happening now. Or he will say, "My children are too young; they have not even started high school yet. If God would give me only a few more years to live to see my children grow up." If you sit there and listen, the patient will do most of the talking. All this will help him to express his feelings. You cannot go into a patient's room with a prepared statement of what you are going to say. You say what feels right at the moment and when you don't know what to say, you simply admit that fact, too.

How do you work with a patient who tells you about terrible pains and shows you the lumps?

I try to give him adequate pain relief first so he doesn't have to complain of terrible pains. If he shows me the lumps it means he wants to demonstrate how sick he is or how much he's suffering. He's obviously asking for empathy, which I try to give him.

In talking to a dying person with whom you've been close, are you supposed to be honest about your feelings of fear, loss, separation, i.e., stop playing games?

Yes.

What is the best stage to approach a patient about death?

You do not approach a patient about death. You wait until he brings up the topic of death and dying. If he talks about his pain, you talk about his pain. If he expresses a fear of death, you sit down and listen to him and ask what he is specifically afraid of. If he wants to make funeral arrangements or a last will long before he is close to dying, you don't try to talk him out of it but help him get a lawyer and put his house in order.

I am concerned about physicians who cannot answer questions in a straightforward way. When a patient asks if he has cancer and the doctor does not say no, there is only one option: "I do not know yet." A refusal to say one or the other will be interpreted by the patient as a tacit yes, and with no indication of how serious his condition is he may suspect he is in pretty terrible shape and this may hasten his demise.

I don't think it will hasten the patient's demise. It may give him some sleepless nights, it may make him worry and wonder, it may give him more anxieties, perhaps, but sooner or later he will again ask the physician a straightforward question. If he still does not receive an answer, he will try to find out through his family, his minister, nurse, or social worker about the true state of his health. Hopefully, one of his friends or a member of the hospital staff will then answer his questions.

My husband has emphysema and has been unable to work for the past four years. He is getting weaker but is still not quite house-bound. We both have our hang-ups; we are in our sixties and we have never talked about death and dying. Should we bring this topic up?

I think if you are already coming to a workshop on death and dying that implies to me that you are curious about it. You would like to help your husband and you have at least some questions about it. Why don't you go home and tell your husband about this workshop. If he changes the topic of conversation you will know that he is uncomfortable and doesn't want to talk about it. If he asks you any questions, you will be in the midst of a discussion on death and dying. You may then ask him if there is anything -- such as the matter of a last will or other things -- that might be easier to take care of now.

How do you deal with a fourteen-year-old who keeps saying she is going to die when she is eighteen years old? She is seriously ill.

I would listen to her and believe that she may know more than we do.

I have a client who is terminally ill. His wife had a heart attack recently and cannot be told the true nature of his problem yet. What is the best way of relating this to her?

I think a wife who has had a heart attack recently, and who knows that her husband is ill and unable to visit, will have more anxieties, more concerns, and will be more upset if nobody communicates with her about the nature of her husband's problems. I would sit with the wife, tell her that I just came from visiting the husband, and function as a messenger between the husband and wife, both of whom are hospitalized. I do not know if this couple is hospitalized in the same hospital; if they are they should preferably be together once the wife is out of the coronary care unit and in somewhat better condition. If not, they should be allowed to visit each other so that they can talk and at least share what they feel can be shared without unduly upsetting each other.

Can you say more about deciding where to put your help when the family and patient are present and the need of the family is greater?

You always help the ones who need the help the most.

How should you approach a person of whom you have no knowledge except the fact that he is dying?

You walk into the room, ask if he feels like talking for a few minutes and then you sit down and ask what it is that he needs most, and "Is there anything that I can do for you?" Sometimes they ask you to simply sit down and hold their hand; sometimes they wave you away because they want to be alone. Or you ask if there is anybody else you can get for them. That is very often what a patient needs -- a specific person whom he chooses. You then get that person and you have helped that patient. Sometimes when I feel like talking and I don't know the patient at all, I say, "Is it tough?" or "Do you feel like talking about it?" and in no time he talks about what really bothers him

How do you help parents accept the oncoming death of a nineteen-year-old son and speak about it with the son? Both realize death is coming, but don't verbalize together. Father and mother don't feel they can talk about it with the son.

Sometimes they need a catalyst, and this can be you. You can say to the parents, "Wouldn't it help if you expressed some of your concerns and feelings with your son? It may make it easier for him to complete some unfinished business between the three of you." If they are unable to do so, don't push, but at least share with them some of your clinical experiences. When this has been done, this may encourage them to open up.

How do you give a patient a clue that you will talk about death with him or her il he wants it?

I sit with him and talk about his illness, his pain, his hopes, and in a short time we are very often talking about our philosophies of life and death. Without any big preparations, we are in the midst of some real issues. Sometimes you can sit with a patient and ask him if he is willing to share with you what it is like to be so very ill. The patient will then talk about all the turmoil he has gone through and will perhaps add, "Sometimes I wonder if I would be better off to die." This gives you the opening to talk about what feelings, ideas, fears, and fantasies he has about death and dying

I am a member of a helping profession, and very often upon entering the room of the patient have very negative gut reactions. How do you suggest that I make contact with such patients? You said, "I share my feelings." I like that, but does that apply here when you have negative feelings?

Sometimes a patient makes you very angry and you feel like taking off. I feel quite comfortable telling a patient that sometimes his behavior irritates me, makes me angry, and maybe if we try to talk about it, we can find ways and solutions so that he does not alienate all the staff. If I'm open and flank about my reactions to him, the patient not only has a way of expressing his anger, but he knows I'm honest with him and he will be more flank and comfortable with me.

When learning how to communicate with patients about death and dying, is it always safe to verbalize your gut feelings to the patient? I say "safe" because I haven't identified my own feelings on death and dying and relating with other people and, therefore, I'm not sure how helpful my feelings would be to the patient.

It is not always safe to verbalize your own feelings. If you come into a patient's room and your gut reaction is, "I hope she doesn't die on me," you naturally don't share this with a patient. If your gut reaction is one of insecurity and helplessness and yet you would truly like to help this patient, it would be "very safe" to tell the patient, "I am not sure how I can help you though I would like to. Is there anything specific I can do for you that would make you more comfortable?" I quite often tell my patients that I feel somewhat helpless or at a loss for words and sit down waiting for a cue from the patient to help me out. These patients then become very comfortable with me because they are able to share their own feelings of ambivalence, of insecurity, and, sometimes, of helplessness with me. Together we try to find solutions.

To what extent is it possible or desirable to talk with a cardiac patient about the seriousness of his heart attack? One does not want to frighten the patient so much that he has another attack which then brings on death.

This fear of talking with cardiac patients about the seriousness of their coronaries is our problem and not realistic. A patient is very aware when he has had a serious heart attack. He should be informed about the seriousness in order to take his diet, his exercise, and his posthospital care seriously. A patient is much more frightened, much more anxious, and much more prone to difficulties if you are not honest with him. He may continue to eat excessively or be so intimidated by the whole experience that he does not dare to exercise at all, which may result in another coronary. We talk openly and frankly with our cardiac patients. We tell them how serious the attack was and at the same time we give them information as to their limits of functioning, encouraging them to follow through with their exercises in order to have a better prognosis.

Since you do not believe in telling a patient a concrete number of months or years of life expectancy, would you agree that it is good to tell him the chances of survival at specific periods of time such as three months, or one year, or two years, or five years?

We have found that patients who have been given a specific number of months of life expectancy, do not do well. Our prognosis is not that accurate that we can tell a patient how much time he has to live. If we tell a man that he has six months to live and he survives the six months, he is often in a very difficult predicament in that he is no longer living and not able to die. I think it is much more honest to say that we do not know, the chances look very slim at this time. If he insists on specifics, the physician should then give him some statistical approximations so that he has some idea of how long he has to put his house in order.

How do you assist patients in not feeling guilty tot sharing their feelings in relation to their own death? For example, I have had many patients who, alter crying, find it difficult to continue with an open relationship even though I try to continue supporting them.

I do not think they stop having a relationship with you because they shared their grief and their own feelings. They have probably been able to work through their anger and their reactive depression and are now in the process of a preparatory grief during which time they are beginning to "wean off," that is to separate and to decathect. This means that they will look for fewer interpersonal relationships. They want to see acquaintances and relatives once more, then the children once more, and at the end they usually like to maintain a relationship with one or two people, usually their immediate next-of-kin.

How would you approach the subject of death when dealing with people who are continually faced with possibility of death but are never "condemned," as with a coronary patient?

There are many patients who are continuously faced with the possibility of death. These patients have to come to grips with their own finiteness. Then they are able to live a very different quality of life, knowing that death can occur anytime, but hoping that there will still be many more weeks and months ahead. These patients should not be avoided; they are the ones who should face the reality of their own death as early as possible.

How does a professional person respond to a nonpro-fessional person when told that "You are cold and indifferent to death"?

I would look into the mirror and question whether there is not some truth in the statement. If I do not feel cold and indifferent toward this person's death and the grief of the family, I would regard it as part of the anger that this family is now going through in relation to the recent loss.

When a family is in a stage of anger, especially after a sudden, unexpected loss, they often displace their anger onto nondeserving members of the health team. If it is unjustified, simply accept it as an expression of their turmoil.

What dangers, if any, are there in becoming too involved emotionally with feelings of terminal patients?

If you have a good team approach where other members of your staff watch over you and with whom you can share your own feelings, there is very little danger in becoming too involved. If you are working full time and in solo practice with many dying patients, there is a risk that you will get too involved, and thus too drained emotionally and physically. No one should work exclusively with dying patients. It is not possible to do this on a full-time basis.

Does one develop through experience an intuition that says, "Yes, now he is talking about his death"? Do you sometimes misfire? Does the patient sometimes "announce" his own death prematurely, or is his intuition always accurate?

I do not know if this is intuition that says, "Yes, now he is talking about his death." I think if you can hear and listen to patients, you'll know when they are talking about their own impending death and will respond to it. Naturally, all of us misfire once in a while. The patient occasionally is concerned about his own premature death when, in fact, he has a fairly good prognosis. It is important to make the differential diagnosis between a pathological fear of death, where the concern of one's death arises with every little symptom, and a "message" from the patient who is terminally ill and who senses that his days are counted. Rather than intuition, I would say that experience and the art of listening will help you to misfire less often.

Should one try to get the patient and the patient's family on the same level, that is to say, at the same "stage" of dying? For example, anger, denial, acceptance?

That is a utopic dream and I don't think this works. This is, again, projecting our own needs rather than accepting people wherever they are and being available when and if they are ready to move on to the next stage.

How do you handle the Lazareth syndrome? -- i.e., the dying patient prepared for death who goes on to recover?

I would rejoice with him.

DENIAL AS A FIRST LINE OF DEFENSE

How would you work with a patient who shows clinical evidence of cancer, but who refuses further diagnostic studies such as bronchoscopy or an exploratory operation for apparent cancer of the lung, or X rays to determine il the cancer is operable and/or likely to benefit from radiation treatment?

A patient has the right to refuse treatment. I think you should level with him, you should tell him what you suspect, and you should give him the option, but it is up to him to reject it or to accept your offer.

Why is it that many doctors still refuse to tell patients that they have terminal illnesses? Is this trend changing?

There are many physicians who are uncomfortable about telling their patients they are seriously ill, but the trend is changing. More and more physicians are beginning to be comfortable about this. We now have more medical schools who include the care of the dying patient in their curriculum. With medical students having had some instruction, some lectures or workshops, and some assistance during their formative years, there is a good chance that there will be more physicians in the near future who will be comfortable with dying patients.

What does a nursing stag do with the patient who has gone through the whole dying process and remains in the stage of denial?

They naturally allow the patient to stay in the stage of denial and treat him like any other patient.

Please tie in the stages of dying with loss of sight. I'm now working with a woman who is losing her sight and is in the denial stage. The doctor has not told her yet. What is my role as a social worker?

Listen to her. This patient will share with you her horrible fear of becoming blind. You then let her talk about it. Tell her about talking books, about the white cane, about the seeing eye dog, about all the people who can live a very normal life in spite of being blind. Don't tell her it's not terrible, but simply tell her that blind people can function like sighted ones. She will then be comfortable and able to talk with you about it if her doctor is too uncomfortable to do so. All my patients that became blind have gone through the same stages as my dying patients. I have worked with blind patients for fifteen years and I'm very impressed with the fact that they axe going through the same stages as anyone else who is in the process of losing something very important.

Must we wait until a patient has been told before we try to help him? How can we reach out to the patient who does not seem to progress from the stage of denial?

We must not wait until the patient has been told about his illness before we help him. There are many ways we can help him. We have to understand the symbolic language that patients use when they remain in the stage of denial and yet talk about their dying. We can give them comfort: physical, spiritual, and emotional. We can sit down with them and say, "It's tough, isn't it?" and these remarks will very often open up the floodgates and the patient will talk with you about his fear, his discomfort, or his fantasies.

A patient with a history of cancer (surgery two years previously) is advised readmission for symptoms, but instead goes to Florida for the winter. Is this denial? His wife goes along with his decision and goes on this journey.

A patient who has had cancer two years before and has a readmission for similar symptoms probably senses that this is now a recurrence of his cancer. He also probably knows that the months, perhaps the years ahead, will be filled with hospitalizations and less and less functioning. It may be his way of saying, "Let's live it up once more. Let's get this trip to Florida in so that we can at least have a memory of having been together in Florida, a dream that we were always dreaming about but were never able to fulfill." After he has completed this unfinished business he will most likely return to the hospital and be a much better patient than if he always nostalgically thinks, "If I had only gone to Florida with my wife." It is, again, important that we do not judge these patients because they do not gratify our needs for an immediate hospitalization and that we do not necessarily label them as "denial." All that it means is that this man has made a choice; it is his choice and his right to make it.

What does a nursing stag do with patients who stay in a complete denial until their death?

They treat them just like any other needy human being and remember that some people need denial and that this should not be broken artificially just because we would like them to drop their denial.

A man has an inoperable cancer, but the doctors say he probably will be able to live almost normally for a year or so before the decline begins. The wile has decided not to tell him as long as he is living in reasonably good health, then tell him. He should still have enough time to "get his affairs in order." Is this the right approach?

This may be the right approach for some patients who need denial themselves, to tell them as late as possible, but this is the exception to the rule. Most patients do better if they are told early that they are seriously ill, but are allowed to have hope, i.e., that he can live normally for a reasonable length of time. If the patient should ask the physician directly whether he has a malignancy or not, the patient has the right to be told, and if he is not informed, the physician may in certain circumstances be liable to a suit later on.

Mr. X, age twenty-two, with cancer, claims to have been miraculously healed. However, all indications are that he is in terminal stages. What role can we play? Is he simply playing this game for the family's sake and does he really recognize his true state?

If a young man with terminal cancer makes a statement that he is miraculously healed, this means to me 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. I 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 opportunity to share with you his feelings about his terminal 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 to tell 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.

I have a patient dying now. She's behaving as if she doesn't know it or she may be denying it. How can I grind this out? How can I make her comfortable and what can I talk about?

I 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 strange guessing game, perhaps pretending to ourselves that we are all-knowing, omnipotent human beings. If you don't know how to help a patient, simply ask her. She may tell you to get a special friend in or she may tell you to get a member of the clergy. She may want to put her house in order or to make a last will. These requests tell you that she knows that she is dying.

You said at one time that every dying person should have one human being who does not need to deny death. Is there such a person or don't we all have our own style of denial?

There are many people who do not deny the reality of death. It requires a long working-through process in our death denying society, but once you have faced your own finiteness and have accepted it, you will see that life becomes much more meaningful and more valuable. Those people who have truly faced their own finiteness will be much better equipped to help dying patients.

WHY ME?

Can you give a Jew more suggestions of how to handle a patient when he asks, "Why me?"

I tell them, "I don't know why you," but you may ask the question the other way around, "Why not you?" Since all of us have to face death and dying it has to happen to any one of us sooner or later. He is really asking "Why is it happening to me now?" I would let him raise this question so that he will then be able to express his anger and anguish and ventilate all his feelings of dismay and other concerns. This will give you cues as to how to help him.

I am a terminally ill patient. When I first found out about my condition I realized that my future had been taken away from me. I was very angry. Have you seen similar feelings

Most of my patients react the same way. They are shocked and they are angry that their future has been taken away, but gradually they realize that they are still living today, that they still have a tomorrow. Because they have a limited time to live, very often they live with more intensity, with different values, and enjoy life more because they do not always plan for tomorrow and next year, the way healthy people do.

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.

If you are comfortable enough to say so, I would say to him that nobody knows when we are going to die, that he is critically ill, but that we are going to try to do everything in our power to see if we can give him another chance. If a patient is told that he is 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 person (nurse, doctor, social worker) do with his own very strong reactions of tears or anger when he fears he cannot control himself? Sometimes this is the most important reason for avoiding the dying patient.

Every helping person needs a screaming room -- 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 anger, where you can disappear with a friend and tell nasty things about your co-workers who aggravated you or prevented you from staying with a needy patient. If we had some facilities like screaming rooms, the staff could ventilate their own feelings and would then be much more able to keep in a certain framework of control when they are back on the ward. This is especially true of people who work in intensive care units where it is very difficult to work for eight or nine hours without letting your feelings go occasionally.

How do you deal with rage and anger? If you meet it with acceptance this can be cruel, but to meet it with anger can also be cruel. How?

A patient who is angry and nasty and displaces all his discontentment and envy onto his friends and relatives and the staff can be very difficult for the people who take care of him. If you are faced with such a patient, you try to discover whether he has a reasonable justification for his anger. If, for example, the food is miserable, then you talk to the dietician to improve the food. If what he is going through is the true stage of anger in the process of dying where he asks, "why me?" then you try to tell him that you can appreciate his anger and his envy and that if you were in his position you would be angry, too. In other words, you try to put fuel in the fire and let him ventilate his anguish without making him feel guilty, without giving him the feeling that you are "above him" or belittling him. A few extra minutes spent with these extra-difficult patients can work wonders. They will call for the nurses less often, the family is more content, and the patients are more comfortable.

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 temporary anxiety. They will soon discover that being together cannot be counted in hours, weeks, or months, but in the depth of their encounter. They may hear of other couples 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 profanity?

Patients who are terminally ill are not any different from healthy people. Profanity can be used as a strong weapon to deal with your own impotent rage.

How do you "help" the family when they have become abusive of the nursing staff? 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 feelings toward them. I wonder if you really want to help them or if you'd rather keep them quiet. If you can learn not to take this abuse and insult personally, but see them as a troubled, anguished family in a great turmoil, 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 should 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 the 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 and not making a statement about where the patient was?

Yes, I shared with him my own gut reactions of rage and 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 own reactions, "I hit the nail on the head," enabling him to share his own rage and anger with me, obviously feeling better afterward.

BARGAINING -- DEPRESSION 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 the stage of denial to the stage of anger, to bargaining, to degression and acceptance. Most of my patients have exhibited two or three stages simultaneously and these do not always occur in the same order. It is, however, important to recognize that when a patient has reached a genuine, true stage of acceptance and he begins to regress, this is often because we do not allow the patient to let go. We may add unnecessary life-prolonging procedures which the patient does not appreciate anymore, or he may have a family member who hangs on and makes him guilty for dying on them. It is in this 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 bargaining at this time. She speaks freely, 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 comfortably 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 terminally ill and says, "I want to die tonight"?

I would say to him that I have felt this way sometimes, but I wonder what makes him think about it. This will convey to him that all of us think about this occasionally. I'm more curious about what stimulated this statement.

Sometimes patients have a premonition of impending death and will share this with you if you listen to them. Don't stop them with statements like "oh, don't talk like that!"

A difficult pastoral situation I have presently is how to help a patient who has had a catastrophic threatening serious illness which we all considered fatal and who succeeded in coming to a degree of acceptance of the imminence of death, but then discovered that instead of dying his sentence is to face severe invalidism.

Sometimes facing death is easier than facing a long life with a serious handicap. If you have been successful in your pastoral counseling helping this patient to accept the imminence of his death, it is most likely that with some additional help, you will also be able to help him face a longer life with limited functioning. All of our patients who have multiple sclerosis, or are paraplegic, or are blind had to go through these stages. It is sometimes more difficult and requires more time to accept this limited life functioning than to face death, which is at least an end to the suffering.

How do you deal 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 cannot say one single word, who cannot read and write 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 understandable circumstances, expresses the wish to die soon, I have no problems sharing 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 doesn't have much courage to face it. They are living on hope. The man does not want to see his wile. 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 would do well if they had been given a specific number of days or weeks for their survival. This is an irresponsible way of communicating with patients because we never know whether or not the patient is an exception to the rule. Many of them have lived far beyond our medical expectations. This man is probably in between; he's not able to live and enjoy himself and he's not able to die; he's angry and everybody around him upsets him because they are kind of standing around 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 him, level with him, and say this was a silly statement that 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 encouraged 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.

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, functioning 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.

Patients with spinal cord paralysis, hemiplegia, amputations, often describe themselves as "half dead" or desiring to die. Do your concepts apply to them and il so, 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 very understandable reaction and it takes time, patience, love, and endurance to counsel with them and to help them find some meaning in their suffering, and, most 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, sometimes for months, and only if you give them enough assistance will they be able to reach a stage of acceptance.

I have just worked with a patient who has gone through seven operative procedures for cancer including 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 would be very sad too.

The stages of dying seem to be analogous to those of the suddenly severely handicapped person. Do you have any comments on this concept?

This is true. A loss of any kind will provoke the same kind of adjustment reactions that we call "the stages of dying."

Do most dying patients lose the fight for life when they realize 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 I wish I were dead"?

Many patients do not want to be pushed doing things they are not ready to do anymore. A patient who says, "I'm going to die anyway and I wish I were dead" 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 help -- physical, psychological, and spiritual -- is usually able to bear it and will be able to come out of 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 just 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 terminally ill patients. I feel very comfortable saying that to such patients.

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. Often we expect too much from our critically ill patients. I have seen many critically ill children who were forced to attend school, to do things that pleased the grown-ups when the child, indeed, needed to decathect and wean off and wanted to be left in peace. It is important to differentiate between this kind of healthy weaning off on the part of the dying patient and a pathological depression where the patient is giving up hope prematurely and does not want to "bother anymore." With very depressed patients who have given up hope, it helps to let them talk about their sense of futility and hopelessness. With a patient who is in the process of separation, it is mandatory that we allow him to wean off in order to find his own inner resources and peace.

How do you respond to the dying patient who expresses concern for his loved one who will be left alone in this world alter he dies?

I 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 face the reality of the impending death.

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. It is from our dying patients that we learn the true values of life, and if we could reach the stage of acceptance in our young age, we would live a much more meaningful life, appreciate small things, and have different values.

In 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 laughingly 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 restless, 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 Tuesday. 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. If 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 die.

Does the patient express a different 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 express 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 difference how you interpret the meaning of death for yourself and others so long as you have some way of interpreting it for yourself and that you feel at ease with it?

People see many different meanings in death. If they are at peace and comfortable with their own, I think that is the best we can hope for.

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 people important to him, and when he ruminates once more about his past life in an attempt to, perhaps, summarize the value of his life and to search for meaning. We found that little significant memories and moments with loved ones help the patient most in the 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.

I 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?

Many of our patients have been able to tell us the time of their dying. Innumerable patients have asked us to call family members or wanted to call in a favorite 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 to as the psychophysiological cues that the patient picks up prior to his death.

You said that our goal is not to move the patient from one stage to another because they may need denial; yet you talk about the last stage as though it were a goal -- especially with the example of the lady who pinched her husband's cheek. You suggested quite strongly that good counseling could move her to acceptance before her husband's death. Please explain this contradiction.

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. It is not our goal, however, to push people from one stage to another. 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 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 equanimity. In these eases we should not push the patient to "behave in the manner that gratifies our need." We should be available to the patient, we should help him to move if and when he is ready to move; and without some additional help, some patients may have difficulties doing that.

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 acceptance if it were not for the members of the helping professions, especially the physicians, who cannot accept the death of a patient. If we as physicians have the need to prolong life unnecessarily and to postpone death, the patient often regresses 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 family which "hangs on" and cannot "let go." It is very difficult for a man to die with peace and equanimity if he sees the turmoil and pain he causes his wife who is not able to reach the stage of acceptance. If we see such a conspiracy of silence or such a discrepancy 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 remain in the stage of acceptance or to reach it.

How incompatible is acceptance of death and the medically positive attitude of the will to live, to fight to stay alive 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 reality of his own finiteness, then he has a much better chance to use all 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 off 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 feeble. She receives gifts and says that I should have the gifts when she is dead. I don't know what to say to my parents about such matters.

I think you should 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 hear your mother's wishes now while she can still think clearly and while you can talk about it at a rather lengthy distance from her anticipated death, things will be much easier later on.

Copyright © 1974 by Ross Medical Associates S.C.