Journal of Nursing Education

The articles prior to January 2012 are part of the back file collection and are not available with a current paid subscription. To access the article, you may purchase it or purchase the complete back file collection here

Mastectomy: signpost in time

Jeanne C Quint

Abstract

When nurses talk about mastectomy they tend to focus on it as a treatment procedure for breast cancer, and they emphasize the nursing care that must be given to facilitate the patient's recovery. Mastectomy is a critical event in the life of a woman. Not all patients survive, and those who do are forced to face the possibility of a shortened life span. For many, the adjustment to this change in perspective is difficult, but it might be facilitated were professional guidance available. This is not a problem for nursing alone to consider, but for all persons concerned with the care of the sick. It is suggested, however, that nursing is in a position to assume increased responsibility for this aspect of care, and there are implications for nurse educators, nursing services, and nursing schools willing to accept the challenge. At the end of this discussion some implications for nursing education are considered.

Not long ago I led a seminar in which graduate nurses were asked to view mastectomy through the eyes of the woman who experiences it. Attention was focused on mastectomy as a critical experience in the life of a woman, and the discussion was centered around the problems she faces after the surgery. First, she enters a period one might describe as an initial shock reaction followed by a series of unexpected physical changes generally unsettling in nature. Secondly, she undergoes a change in body appearance which is defeminizing and which eventually requires a decision concerning camouflage. Finally, she faces a future marred by the prospect of shortened life and the possibility of slow, painful death. It is this last problem, that of an uncertain future, which I want to discuss here.

The study from which this article is derived was an investigation of adjustment to mastectomy and was limited to a follow-up period of only 1 year.* It is obvious that adjustment to such a major change continues beyond this point and, in fact, probably never ceases. This discussion is limited by the study's limitations, but I need hardly point out that the first year is a very important period in the life of a woman who has undergone a mastectomy. To understand the problem of an uncertain future, it is useful to view mastectomy not as a treatment procedure but rather as a turning point in life. All human beings undergo experiences which have great impact on them and which alter their views of themselves. One can label such experiences turning points.1 Mastectomy is an incident that represents a turning point of a particular kind. It serves as a significant signpost in time, and it does this by bringing the notion of dying into a woman's personal reality. All of us know in a vague way that one day we must die; a woman who has had a mastectomy must face the fact that she has cancer, a disease closely associated with death. More important, she asks herself the basic question: "Did the doctor remove all of it?"

The reader will not find this discussion comfortable, for the women in this study met one of two outcomes ; either they did not survive the first year, or they began a living pattern darkened by concern about when they might die. For these women time was foreshortened, and they began a search for guideposts to direct them in learning to live with uncertainty. A major consequence of surgery for cancer is that time assumes new meaning.

Time is an important variable for the woman who experiences mastectomy. Breast cancer most commonly occurs at the time of…

When nurses talk about mastectomy they tend to focus on it as a treatment procedure for breast cancer, and they emphasize the nursing care that must be given to facilitate the patient's recovery. Mastectomy is a critical event in the life of a woman. Not all patients survive, and those who do are forced to face the possibility of a shortened life span. For many, the adjustment to this change in perspective is difficult, but it might be facilitated were professional guidance available. This is not a problem for nursing alone to consider, but for all persons concerned with the care of the sick. It is suggested, however, that nursing is in a position to assume increased responsibility for this aspect of care, and there are implications for nurse educators, nursing services, and nursing schools willing to accept the challenge. At the end of this discussion some implications for nursing education are considered.

Not long ago I led a seminar in which graduate nurses were asked to view mastectomy through the eyes of the woman who experiences it. Attention was focused on mastectomy as a critical experience in the life of a woman, and the discussion was centered around the problems she faces after the surgery. First, she enters a period one might describe as an initial shock reaction followed by a series of unexpected physical changes generally unsettling in nature. Secondly, she undergoes a change in body appearance which is defeminizing and which eventually requires a decision concerning camouflage. Finally, she faces a future marred by the prospect of shortened life and the possibility of slow, painful death. It is this last problem, that of an uncertain future, which I want to discuss here.

The study from which this article is derived was an investigation of adjustment to mastectomy and was limited to a follow-up period of only 1 year.* It is obvious that adjustment to such a major change continues beyond this point and, in fact, probably never ceases. This discussion is limited by the study's limitations, but I need hardly point out that the first year is a very important period in the life of a woman who has undergone a mastectomy. To understand the problem of an uncertain future, it is useful to view mastectomy not as a treatment procedure but rather as a turning point in life. All human beings undergo experiences which have great impact on them and which alter their views of themselves. One can label such experiences turning points.1 Mastectomy is an incident that represents a turning point of a particular kind. It serves as a significant signpost in time, and it does this by bringing the notion of dying into a woman's personal reality. All of us know in a vague way that one day we must die; a woman who has had a mastectomy must face the fact that she has cancer, a disease closely associated with death. More important, she asks herself the basic question: "Did the doctor remove all of it?"

The reader will not find this discussion comfortable, for the women in this study met one of two outcomes ; either they did not survive the first year, or they began a living pattern darkened by concern about when they might die. For these women time was foreshortened, and they began a search for guideposts to direct them in learning to live with uncertainty. A major consequence of surgery for cancer is that time assumes new meaning.

Time is an important variable for the woman who experiences mastectomy. Breast cancer most commonly occurs at the time of the menopause, when many women in our society are already questioning their social value. It appears at a time when, not uncommonly, other serious problems must be faced. A husband may have an illness or may be worried about his business. Illness, aging, or the loss of a job may have brought financial reversals serious enough to force the use of clinic resources by persons previously accustomed to the services of a private physician. In many instances the women are alone; their husbands have died and their children have their own family commitments. In other words, at the time in life when mastectomy is experienced it usually is not the only serious problem the patient must face.

Time is important in a mastectomy career in another way. Much publicity has been given to the importance of self-examination for breast lumps and of early referral to a physician if suspicious thickening is found. Women in our society cannot help but be aware of breast cancer if they read newspapers, listen to radios, or watch television. Regardless of the hopeful outlook expressed in much of this publicity, many women still regard breast cancer as synonymous with death. Some women, for example, never examine their own breasts. A graduate nurse once commented that she never did this because there was a history of breast cancer in her family and she was afraid. The waiting period between the detection of a lump and the surgical treatment can be very short or very long. In this study of twenty-one women, the delay time varied from a few days to as long as five years. Such behavior reflects the great fear this disease carries with it. Although this article is primarily about what happens after surgery, it is important to remember that the period before surgery is an integral part of this experience. The women in this study did reach a decision to seek professional help, but there are some women with breast cancer who do not. Previous personal experience with the cancer death of a close relative or friend, particularly from cancer of the breast, influenced the decision-making process. Two basic patterns of response under these conditions were noted. Some of the women sought medical care immediately upon detecting a lump. The rest of the women avoided getting professional advice until such time as the cancer was difficult to ignore. In either case, these women associated breast cancer with a specific mode of dying. A woman who delayed several years described the period just prior to surgery as the most frightening time for her. She said, "I felt I was beyond help because I personally have been so neglectful. This frightened me. I felt I was doomed."

Some women behaved in ways which showed that they, too, envisioned the surgery as the end for them. One woman was told by a doctor that she had terminal cancer and had only 6 months to live. Here are her words:

I immediately started making all preparations, making my will and seeing that everything was in line, and tagging things that are mine with the names of people I wanted to leave them to. I was ready for the insane asylum, I really was.

Another woman made this statement:

I never thought I was going to come out of it. I went to the bank and drew out my insurance policy. I never thought I'd come out of it.

Still other women kept themselves very busy with numerous activities. Some could not tolerate being alone and spent more than the usual amount of time with their families. What is important is that the majority, in one way or another, behaved as though the forthcoming surgery were a death knell. It is not surprising that the surgery, with its specific message, "You have cancer," served as an announcement that death might come sooner than anticipated. The announcement catapulted the patients into a way of life in which the finiteness of existence became a very real fact, and they began the search for clues to help them decide where they were in time: How near or how far is the end.

Death is a topic much avoided in our society not only by laymen but also by professionals in medicine and nursing. This is a key point, for these women receive little assistance in their search and, usually, they must decide for themselves what their status is at any given time. The women in this study did not follow a single pattern of adjustment but rather fall into three different groups. First, there are those who face an uncertain future under circumstances in which wound healing is satisfactory and physical recovery appears equally satisfactory. Second, there are those who live with an uncertain future under conditions in which the incision does not heal and/or physical discomfort persists. Finally, there are those who, at some point, face physical regression and certain death.

We turn first to the women who appear to make a satisfactory recovery, for the stages through which they pass in the first year form a baseline from which to view what happens to other patients in the same predicament. All three groups use similar clues in making judgments about themselves; it is the timing which varies.2

Uncertainty with Healing

The impact of what has happened does not hit immediately. For the first few days the woman is preoccupied with pain and discomfort, and shows little overt emotional reaction to the surgery. It is almost as though she has a "shock" response until she hits the bad day, usually the third or fourth after surgery, at which time she commonly describes herself as feeling "terribly blue." It is after this point that some reveal their upset by having crying spells, usually precipitated by a good look at the incision. Such episodes appear more frequently as the time to leave the hospital approaches. Many women, however, remain remarkably composed during this period. As one described it:

You have plenty of company [in the hospital] and it makes a difference. . . . You don't begin to think about it until you get home.

The early period out of the hospital is a sharp contrast for it is characterized by agitation and nervousness, by intense feelings of exhaustion, by preoccupation with the incision, and with profound awareness of all the unexpected physical changes that appear. These women were given little forewarning by doctors or nurses concerning what to expect after they leave the hospital, and they were upset by such unanticipated occurrences as (1) the protracted pain, (2) feelings of numbness under the arm, (3) the size of the incision, (4) the amount of oozing from the incision, (5) sudden swelling of the arm, and (6) a tight cast-like feeling about the chest wall. Many were disturbed to find they could not lie flat in bed because the muscle pull was "so terrible."

They described themselves as tense during these first few weeks. One woman said: "I'm going mad because I can't get out." Another commented: "I get so exhausted when I'm with another person." A third said that her nerves were giving her more trouble than the operation itself. Many were surprised to find that they burst into tears when they least expected it to happen. Their primary interest during this initial period was with physical signs and symptoms ; their major task was an attempt to assign meaning to them. One woman stated the problem well when she said, "I've become very lump conscious." Healing of the incision is an important indicator that all is going well; but there are many attendant signs that raise questions in the mind, and the mastectomy incision is a notoriously slow healer. It is not surprising that these women turn to doctors for an interpretation of various signs and symptoms, and some received answers they regarded as helpful. Others were not so fortunate, however, and found the doctor's reply less than satisfactory.

This is an unsettling period and one characterized by frequent, unpredictable physical changes and reactions. The women rely mainly on two sources for information about their condition. First, the smallest bodily change, which they interpret as either "good" or "bad." Second, they seek an interpretation from the doctor of the meaning of these physical signs. It is not uncommon that the doctor makes a prediction which does not come true. For example, one woman was told before leaving the hospital to use a Bandaid on the incision, but at home she found the drainage so profuse that large dressings were required. It is the usual practice during these early weeks to make frequent efforts to get specific answers from the surgeons. Many physicians respond by saying such things as, "The incision looks wonderful" or "Don't worry, everything will be taken care of." When the wound heals satisfactorily, the patient usually is content with this general statement. When she is not given suitable answers to her questions, she remains in a period of heightened tension and fear and eventually begins to look elsewhere for help in determining her true condition.

Another characteristic of the initial period is that family and friends are described as solicitous and concerned. In many instances the woman is not permitted to return to her own home ; she stays with relatives for several weeks. As one woman put it:

They act like they love me more, but they're not fooling me. . . . I'm sure that in another couple of weeks they'll go back to being themselves again. ... In spite of the fact that I'm aware of why they're doing this, I like it.

She went on to say that with friends in particular one felt a little bit fussed about but that one knew that the friends were motivated by goodness and kindness. Talk about the surgery itself tends to be social in nature, with friends asking "How are you doing?" and then changing the subject to other matters. In some instances, friends are quite shocked to learn of the surgery but they seldom dwell on the topic for any length of time.

Most women are very self-conscious about their appearance at this time, and many feel that everyone looks at them and knows about the surgery. Any mention of cancer or of dying is done in a more or less casual way. For example, one woman was looking at letters sent by her family in the East and made this joking comment: "I don't mind dying, but I hate to lose all this stuff."

Healing of the incision and being fitted with a satisfactory breast substitute mark the beginning of what one might call the period of trial return. This starts generally in the sixth or seventh week; and as one woman said, "It gives you a terrific boost." She went on to say that it was "maddening" before she could use a brassiere and be fitted. She spoke of the frustration of trying to use nylon stockings for stuffing and said, "It's disgusting, you can't get enough, or you get too many stockings in and they fall out."

This is a period of self-trial in an attempt to see how well she can do. Some of the women return to work, although they may find themselves unable to do a full day's job at first. During these weeks they usually find that they cannot lift or push with the arm on the operated side, and this sets limits for certain physical activities. Characteristically they describe themselves as "feeling better" and are generally pleased with what they are able to do. There is far less reliance on the doctor's opinion at this time, and many make decisions without consulting him. For example, one woman decided to begin driving her car and simply did not ask her doctor about it. There is a general moving way from talking about the surgery. One woman stated that she told people how she felt until someone told her about a relative dying of cancer. After that, she seldom elaborated. Most denied having thoughts about death at this time.

Around the third or fourth month a period of genuine letdown appears. Characteristically there is concern about the degree of fatigue which persists. To quote one woman : "I don't know why I should be so tired." At this time there is a refocus on physical signs, as the following quotation illustrates:

Well, I suppose it's fatty tissue that has come down under the arm, and it feels like there's something there that shouldn't be.

Activities that were easy to perform before the surgery now become overwhelming, and work that formerly was simple is now described as "smothering." Such tasks as going to the dentist become major events. Family and friends no longer treat them as invalids and, in fact, generally expect them to be back in the swing of activities. One woman stated the situation clearly:

If they see you're moving arounà and you look half-way decent, they just don't seem to realize that there are moments when you don't feel like moving. I don't think it's mental.

She spoke with considerable feeling about the lack of consideration shown by many persons and made the following statement about what she had learned:

I'm learning not to pay too much attention to what they have to say. I know which people to talk to which ones not to say anything to, with which ones to pretend that nothing ever happened, and those I want to talk to, if I feel like talking.

At the sixth or seventh month the letdown mood has merged more clearly into a period of open awareness that one's future time on earth is quite uncertain. Increasingly they make references to other women who have had the same surgery; many quite directly state that they identify themselves with the stories they hear. It is in this period that they begin to make statements that clearly indicate they see time foreshortened. One woman, for example, said that her husband had given her a marvelous birthday party and she really appreciated it, for it might be her last. As they talk about what they are doing, it becomes clear that they are not able to make definite plans for the future. They are likely to say, "I only hope I'm here." At the same time they describe themselves as not dwelling on the topic. Most say they do not talk to their families about their concerns because they do not want to be a burden or a worry.

By the end of the year the women find themselves controlling conversation about this aspect of their lives. They have learned that their families do not like to talk about it. Also, they have found that talking about it precipitates depressing thoughts. Unfortunately, these thoughts continue to be triggered inadvertently either by unexplainable aches or pains, and by knowledge of, or stories about, women dying from breast cancer. As one woman said, "I'm so conscious of it, it wears me out.

One woman said she found herself vacillating between whether to believe the doctor or what she sees happening to others with breast cancer. She said that she did not like to know other women with mastectomy because they wanted encouraging words from her and she found it too difficult to lie. They find themselves vulnerable to stories about cancer generally. At the end of the year they were less influenced in many ways by what the doctor said than they were by what they saw happening to other persons with cancer, particularly women who had undergone mastectomy. In spite of what the doctor said, these women continued to live in doubt and with no real certainty of surviving another year.

Complications and Uncertainty

We turn now to a group of women who endured a struggle of even greater difficulty. It is not surprising to find that when the incision does not heal and complications develop the entire year becomes far more upsetting, and the periods described above extend over long intervals. Not uncommonly wound infection led to prolonged hospitalization and sometimes precipitated readmission for women already discharged. The women were frightened by what happened and focused considerable attention on the healing process as an indicator of their progress. Those put into isolation became quite depressed and said that being alone gave them too much time to think about themselves. The majority were upset because the nursing staff was inconsistent in methods used for changing dressings or applying compresses. Some of the women were not hospitalized, but were directed to take care of themselves at home. In contrast to those in the hospital, women in this situation had limited direct access to their doctors and were prone to make frequent efforts to contact them by phone. When asked if the doctor had told her what to expect at home, one woman responded with, "No, he just let me be surprised. __ I wish I had been prepared for the discomfort and for the drainage and all." She went on to say that she felt uncomfortable about phoning him, but that she left a message for him at his office when her worries became too great. When he did not return the call, she later called him at home. Here is her description of what happened:

He didn't say a word you know. Just kept silent until I started to talk about my problems. He'd make me feel that he's not going to encourage me even to talk. I just had the feeling that even though I paid him a good price for his surgery, he still doesn't want to be bothered.

The illustration is used to emphasize the extent to which these women want specific reassurance that everything is all right. Unfortunately, the doctor cannot make such a definitive statement. He is in an uncomfortable position, for what surgeon wants to say, "I'm not sure whether we got it all." It is not surprising that under these circumstances some doctors avoid prolonged discussions with their patients, but it is equally understandable that women frightened by what is happening to them will push the doctor for answers.

As one might expect, these women were very upset that the incision did not heal, particularly if the doctor had predicted that it would. In one case the wound was still partially open at the end of the year, yet this woman had been told by the surgeon, "In three months or so you'll never know this happened to you." It is not surprising that she was in a morose state at the time of her last interview. She said:

It's disconcerting. When that drain under my arm opened up and started to drain every day, I talked to them about it. AH they said was, "just let it drain." Well, in the meantime it's closed up again. But it still is disturbing to me. Why, why should it suddenly break open?

For a woman who had seen her mother die of breast cancer and had watched her sister deteriorate progressively from the same disease, the failure in healing was an important sign. She said that she did not blame anyone, but she did find it terribly confusing when doctors gave contradictory information and advice. Other women also found differences of opinion among doctors disconcerting and far from reassuring. It was not uncommon for them to seek advice from another doctor if they were met by evasion or nonspecific answers from the surgeon, or were unable to reach him. One woman found herself having to make a choice between two kinds of therapy.

It is not only delayed healing which precipitates a difficult course. Women who received radiation therapy were among those who described themselves as uncomfortable and weak, particularly during the therapy interval. They suffered from increased pain and throbbing in the incision. Many looked on radiation therapy as a negative sign, even though they were told it was used as a precautionary measure. One woman described the experience of cobalt therapy as "like being in a vault." Another said: "Sometimes I'm so scared down there. When I am on that table I wonder what they're going to do next."

The women in this group had great difficulty in identifying physical signs indicative of improvement, and they channeled more time than the others in an attempt to obtain reassurance from doctors. One unfortunate outcome for many was that this maneuver led to a variety of opinions more than it did to clear-cut definitive statements that were in agreement about prognosis. Eventually they, like the women in the first group, placed increased emphasis on stories about other women with breast cancer. The use of brassieres and breast substitutes was delayed for several months, and some women never achieved complete success in their use because they were bothered by tenderness over the surgical site or could not find a comfortable outfit. Unlike those who had uncomplicated healing, these women seldom described a period of feeling better. They focused more attention on physical well-being in general and were easily alarmed by all kinds of symptoms. Many said they had more colds than usual during the year, and it was quite apparent that die thought of a recurrence of the cancer was never very far away. They had learned to keep many of their concerns a private matter, believing that their families preferred it this way. They also were unsure of surviving another year and were struggling to achieve serenity as they faced a future in which each day might bring a warning sign. In her last interview one woman said:

If anything goes wrong you say: Well, they say it's healing; they say they got it all. But you know and I know that everything can look like peaches and cream and not be that way at all. It's a terrifying thought, and yet it's something that you must learn to live with. There's nothing else in the world that you can do but live with it.

Living with it is far from easy, to judge from our observations, and the end of the year found them with little peace of mind concerning the future. Moreover, the majority of these women faced the problem alone, not because family and friends lacked concern, but usually because the latter were unable to talk openly about cancer and the possibility of death.

Death Becomes Uncertain

We turn now for a brief look at the short careers of those who, within the year, faced the certainty of death. Characteristically these women had delayed seeking surgical treatment; in fact, they had delayed to the point that the cancer was visible externally at the time of surgery. In these situations the doctors could not remove the growth completely. One surgeon commented [referring to a specific woman] :

She had very extensive involvement; we couldn't get it all and probably some of it is in the skin. I told her daughter everything, but I've told her only that we removed all of it. She is very pleased that it is gone. ... I won't say anything more unless she asks. I don't think it is necessary. She is going to die with it anyway. Right now she is very pleased that it is gone.

In contrast to the other groups, these women at the time of the first home interview described themselves as feeling well in comparison with how they had felt before surgery. They accepted what the doctors had told them and did not ask detailed questions about their condition. When asked what the doctor had told her, one woman said:

Don't think he told me anything; maybe I don't remember. Well, he didn't want to tell what it's going to be, nobody told me. I understand that . . . but as soon as I got better, I said to him, "No matter for how short a time I'm happy and that's all." So he let it go at that. Maybe the children know more, but I don't care. . . . I'm not going to ask ; I'll see when it's coming. You have to die sometime; that's why I made up my mind. . . . It's too bad it has to happen, but it has to happen to everybody.

Initially friends and family were solicitous and concerned; after the first few weeks, there was little talk about the surgery or its possible consequences. Family showed their concern in other ways, however. To illustrate: one woman made a trip across the country to visit her children at their request although she herself said that at six weeks it was "too soon."

It was characteristic of this group not to expect recovery, although some went through the motions of acting as though

all were going well. To quote one: "Yes, I more or less expect it. ... I don't think I ever did expect full recovery."

For each, however, there came a point when she could no longer ignore the signs she saw in herself, as the following quotation shows :

I know that I'm apt to go sooner with a cancer surgery. Knowing that I have cancer, and I have it coming back again. ... I know that possibly it wil] eventually be the cause, indirectly, of my death, and I'm prepared.

For most of the seven months following the surgery this woman had behaved superficially, as though everything were going well. She could not maintain the facade, however, when she saw tumor nodules growing on the incision and was much bothered by shortness of breath. The doctors had insisted on her having numerous x-rays, and she said:

I almost began to think that maybe they've found something wrong with the lungs. They always tell me no; that the lungs are all right. But, they don't tell you everything they know. ... I think that they're stretching the truth a little bit when they say everything's normal.

In spite of superficial signs of recovery following surgery, these women were aware of indications that all was not going well, but they continued to play the game with their families and their doctors. At three months one woman said that she knew she was going to die, that she could put two and two together; the question was "How soon?" At this time she began reminiscing about the deaths of her husband and of friends long gone. She talked of her desire to die quickly, of not wanting to suffer. For her the surgery had removed a necrotic bleeding mass and had given her some extra time for enjoying her children. In her words:

Of course, I'll die in the end ; I would have died then (meaning without the operation), and now too I will die, but actually I appreciate these few months.

It was characteristic that each woman reached a point at which physical signs assumed greater significance than what the doctor had said in predicting her future. When this happened, we found an open admission that death was nearing and an acknowledgement that this knowledge did not come as a real surprise. One woman said that at the time of surgery, when she learned she had cancer, she knew it was the end; but she decided to go along with what the doctor said. Now she could no longer take his words at face value. Although, at this point, these women were able to talk to the researcher about their awareness, in not all cases were they so open with their families. There was, instead, a pattern of "protecting" their families from having to face the briefness of the time that was left. As somatic signs increased in severity, there was a reaching out to the doctor similar to the pattern observed during the early posthospitalization period. At the same time there was a reaching toward their families, for, as one woman said: "Well, you never know when the end is coming, and I don't want to be found there in a house, alone."

During the final weeks it was usual for families to take over part, if not all, of the decision making for the patient. By this time it was usual for her to be confined to bed because of severe pain and sheer fatigue. There was heavy reliance on doctors as pain and discomfort increased. One woman, whose family and doctor combined forces and put her into the hospital for x-ray treatments, made this comment:

You know, actually Tm against all this help. I know it's not going to help. She says [referring to her daughter]: "Well, I keep telling you, they're not trying to prolong your life ; they try to make it easier for you."

Unfortunately some medical treatment offered for the alleviation of discomfort provided the reverse and, in some instances, brought moments of intense anguish. For both families and professionals this was a difficult time; all were caught in a web of helplessness. During this period the patients themselves were not aware of time in the usual sense, and they increasingly showed less concern about it. Their attentions were focused completely on the end of the story. As their pains increased in severity, they wanted the end to come. For them, death was welcome.

Implications and Comments

The findings from this study have implications for patient care in its broadest sense, and certainly for the care of patients with cancer. To judge from the experiences of these women, there was little professional guidance available for help with the problem which was of primary concern to them. Equally important, professional help was not available at the time the patients were ready for it. The kind of information given them before they left the hospital did not prepare them for what actually occurred. Further, it was not while they were in the hospital that they were ready to talk about their concerns and fears but only after they had been home for a week or so. And at that time, there was no one available with whom to talk. They did not talk to the doctor about the things they were most concerned about. Generally, the doctor did not initiate conversation about such topics but focused primarily on wound healing and therapeutic regimes. That these patients welcome someone who will permit them to talk about their real concerns was demonstrated in the kind of relationship they established with the nurse researcher who gave them the opportunity to take off the mask, at least for a brief moment, and to talk about matters they found they were not given an opportunity to share with anyone else. It is apparent that a woman with cancer lives a lonely life, even in the midst of many people. As these women described their lives in transition, it raised the question as to whether it was beneficial that everyone avoided use of the word death and, indeed, prevented them from discussing their concerns about it. Obviously, family and friends have difficulty because of their personal involvement. It is doubtful that the doctor, whose major focus is therapy and cure, could comfortably provide this outlet; most physicians have not been trained for mis kind of function. A professionally trained person might make it possible for these women to handle the notion of dying more openly and without the bleak loneliness which presently exists for them. Nurses might logically be the persons to assume this responsibility were they prepared for it.

There is no simple solution to a problem of this sort, but it is reasonably certain that a problem exists. Dying and the fear of dying seem to be the major concern of persons who have cancer; yet few nurses are able to assist them in coming to terms with this concern. If nursing is to accept this challenge, it must take a critical look at the knowledge and insights it provides in its educational programs for preparing practitioners. Nurse educators may need to revamp not only what they teach about cancer nursing but also how they teach it. Training practitioners to cope with situations full of emotional intensity is not easy; moreover, it cannot be accomplished in a few weeks. It takes time and skilled teachers. Permitting someone to talk about death forces one to face one's own feelings about death. The task is difficult unless there is available someone to serve as listening post and backstop, and it takes time to develop the ability to listen comfortably to such talk. Further, this kind of interaction has a poignancy which is felt by both persons involved, and the professional does need safeguards and supports to pull himself out of the relationship when it threatens to engulf him. Any effort to prepare nurses for this kind of function is bound to fail unless there are instructors who can assume this kind of responsibility for the students under their direction. It may be unnecessary to add that instructors also need backstops to implement teaching of this nature.

There is a second point to be made. Educational programs in schools of nursing in general focus on the life-saving aspects of practice, yet many patients with intractable cancer are used for student assignments. Little attention is given to nursing practices with respect to death, except for those associated with terminal stages of care, and relatively little time is devoted to this topic.8 This study indicates that the major problem a woman faces following mastectomy is learning to live with death, and there is reason to think that all patients with cancer share this focus. If death and the fear of death play such a great part in the ongoing life of these patients, then nurse educators may want to extend knowledge about death not only as a physiological process but also as a phenomenon which has psychological and sociological consequences of significance.

Bibliography

  • 1. Strauss, Anselm L.: Mirrors and Masks, Free Press, New York, 1959, pp. 93-100.
  • 2. Davis, Fred: "Definitions of Time and Recovery in Paralytic Polio Convalescence," American Journal of Sociology, 16:582-587, 1956.
  • 3. Quint, Jeanne C, and Strauss, Anselm L.: "Student Nurses, School Assignments, and Dying Patients," to be published.

10.3928/0148-4834-19630901-04

Sign up to receive

Journal E-contents