Int. J. Radiation
Oncology Biol. Phgs.. 1976, Vol.
I. pp. 515-520.
PSYCHOLOGICAL METASTASES
Pergamon Press.
Printed in the U.S.A.
REACTIONS TO RECURRENCES, OR DISSEMINATED CANCER
ARTHUR H. SCHMALE, M.D. University of Rochester, Medical Center, Strong Memorial Hospital, 601 Elmwood Avenue, Rochester, NY 14642, U.S.A. Recurrences,
Metastases,
Disseminated
disease, Psychological
The most common psychological meaning of the first recurrence of disease of any kind is that something has gone wrong, things are out of control. The previous therapy has been inadequate, host resistance has gotten lower, or the disease is more powerful than previously expected. When the diagnosis of the disease that has recurred is a form of cancer. the concerns are magnified many fold. The immediate and almost universal assumption to the diagnosis of cancer is that life itself is being threatened. Following the initial treatment, the anxiety and dread concerning dying disappears and is replaced by a strong sense of relief and a belief that everything is going to be all right. This profound feeling of having made it, of having disproved the worst fears, is experienced by the patient even when he has been told previously that the treatment was palliative and not curative or that the evidence of disease was extensive. The evidence of local, regional, or widespread recurrence of cancer will reopen old psychological wounds. Whatever reactions the patient experienced initially in relation to the diagnosis may occur again with the thought that his previous fantasies of what was the worst possible that could happen now has become a reality. The distress created may lead to behaviors and activities which interfere with the patient’s seeking and receiving effective medical care. Perhaps the greatest number of patients who tend to delay scheduling a visit to their physician to check out their suspicions do so because they are afraid to have their thoughts and feelings become a reality. They cannot deny the return or spread
reactions.
of the disease once confirmed by the physician. Thus, as long as their awareness has not be confirmed by the professional, it still remains non-real, a possible fantasy and deniable. (“It’s just a swollen node”; “Losing weight because I’ve been too busy to eat a good diet”: “My shoulder hurts; I must have strained myself”.) Some patients will blame the recurrence on the physician who treated them initially. The treatment must have been inadequate. Thus, there is no reason to return, for what they rationalize will be further ineffective treatment. Other patients are skeptical about what medicine and doctors can do for treating cancer. These individuals may have felt pressured into an initial course of treatment in the hopes that they were going to be one of the lucky ones that the great new drugs would cure. Once they recognize that this did not happen, they, much more directly, bypass the available medical resources for further care and go more directly to those who offer a cure based on what they consider more natural means (cures based on prayer, faith healing, the additions of various kinds of vitamins or foods to the diet, or extracts of particular plants or hormones administered by various routes). Large sums of money may be spent in trying various preparations or traveling to distant places for the help of those individuals who make a business of offering cures for cancer. Not infrequently, patients, with the knowledge and consent of their families, dutifully follow the medical regime prescribed by their oncologist. while secretly, or without telling their physician, also take a
516
Radiation Oncology ??Biology 0 Physics
worthless remedy they are convinced is going to be the effective means of cure. For the physician to know that patients and families frequently are psychologically vulnerable to such schemes at a time a recurrence of metastatic lesion is discovered, makes it possible to reduce the attractiveness of such unscientific alternatives.* From a psychological point of view, it is not difficult to understand why many cancer patients have such an intense desire to believe in the possibility of a magical cure, since most people who get cancer have no knowledge of how they got it, what they can do to facilitate its treatment, or what they can do to prevent its recurrence or spread. In essence, it is a disease over which the patient has little or no control. Knowing that a patient will look for something dramatic at a time when his life seems threatened, allows the doctor to discuss with the patient the possibility that he anticipates that he will be tempted to try things that are tauted by friends and loved ones as possible cures. The physician, after indicating his awareness and understanding that such might occur, should be prepared to let the patient acknowledge or deny such thoughts or actions he has had or taken in this regard. If the patient indicates he has heard about a new approach, it is important to elicit what he has heard, what he thinks, and what he is inclined to do about what he has heard. In turn, the physician should follow by indicating his knowledge about the procedure or substance and its therapeutic value, or if it is unknown to him, his willingness to investigate and report back to the patient. It is reassuring for the patient and family for the physician to tell the patient that he is interested in knowing about all such possible cures of cancer, so he can check them out, not only a service to the patient but also for other patients and for himself. This approach opens the door for the patient to bring to the physician any and all concerns or information about any therapies or remedies he may hear or read about. If the physician suggests that the patient have a consultation with another oncologist or indicates that the patient’s problem is being reviewed by a multidisciplinary team, at the
LMarch-April 1976, Vol. 1, Number 5 and Number 6
time of a recurrence or the appearance of a metastatic lesion the patient will be reassured that the physician is not depending solely on his own opinion or expertise. The physician is mindful of the patient’s concern that there may be other things that should be tried or done. Such action demonstrates that the physician is leaving no stone unturned to give the patient the best possible chance for remission and cure. There also are patients, who because of their personality characteristics, blame themselves for the recurrence or spread. They can trace it back to earlier experiences (ate the army food, inhaled those fumes, didn’t take care of myself, etc.). Because of these feelings, they, too, delay seeking help. The evidence of metastases or widespread disease reinforces what they had already believed about themselves; “I’m not worth bothering with or don’t deserve good health or a long life”. For those individuals who are informed that they have evidence of metastatic or widespread disease from the time of the initial diagnosis, the fear of dying is not simply a fantasied fear, but a real threat. Knowing the reality frequently is less painful than living with the fantasies of the unknown. If such widespread disease has a prolonged quiescent period as a result of treatment, some will become suspicious and apprehensive with every ache and pain-“It’s like living on top of a powder keg, a timebomb. You don’t know when it’s going to go off and destroy you”. Most, even when the disease is slowly progressive in spite of therapy, do not maintain these thoughts continuously, but engage in what Weisman calls denial of implications-life goes on with, “thoughts of retirement in two years”, or “my husband is the one who is really sick” or “everyone dies sometime”. The awareness of the disease and its extent is present only intermittently.4 Most individuals living in the United States in 1976 are interested in knowing their diagnosis and the extent to which the cancer is affecting their body and their chances for survival. Initially, they may be profoundly upset and disturbed by being given this knowledge. However, being informed gives
Psychological
reactions to recurrences.
metastases
an opportunity to make decisions and select options for action--to actually try various courses of action and see which is most effective for them. These actions may involve decisions about their disease, the choice of treatment available, and what they want to do with their lives in general. Some individuals, including those with strong religious beliefs and intense family ties, are extremely dependent and have great difficulty in handling the knowledge of the extent of their disease and even at times facing the fact that they have a diagnosis of cancer. In such situations the family members frequently will be of similar psychological dispositions and will express a wish that the actual diagnosis should not be made known to the patient and to others in the family because, “They could not take it; Don’t know what they would do, maybe go berserk; They might even kill themselves; or It is God’s will and maybe this is God’s way of trying to test our faith”. More often than not, it is the relative on whom the patient has been dependent who does not want the information given to the patient. It is the relative who cannot bear to discuss it with the patient. The physician has to be guided by the patient’s requests and actions. Some patients, who say they want to know, will not even acknowledge they have heard when they have been told. Such individuals may insist that information is being kept from them and insist that no one tells them anything when such is not so. Such a response indicates how one part of the mind protects the individual from that with which it cannot cope; even when intellectually the knowledge is thought to be important when the answer is given it may be blocked out as if it wasn’t heard.
them
PSYCHOLOGICAL REACTION TO THE THERAPY Therapy for cancer, particularly metastatic or widespread forms of the disease, usually includes a complex combination of therapies involving drugs and sometimes radiation therapy, and surgery. If treatment is carried out at one of the cancer centers, the patient may fit the criteria for participation in one of the cooperative treatment protocoJs designed for study of new drugs or procedures and
or disseminated
cancer 0 A. H. SCHMALE
517
combinations thereof. These therapies, designed to reduce the tumor burden if not to eradicate it, extend over prolonged periods of time and create side effects in the surrounding systems and tissues. The treatments cause intermittent and sometimes prolonged periods of familial, social and work disability. Treatments which cause toxic side effects, particularly to the bone marrow and to the G.I. tract, may not only reduce the individual’s capacity to fight off infections but also to cope psychologically. What was tolerable in terms of uncertainty before, now may create more disability than the self-esteem, self-concept, self-prognosis can take. The rigid individual, who also is basically dependent, may have learned to adjust to inadequacies with a very aggressive pseudoindependent approach to problems. At the time of a recurrence of cancer such a person may become belligerent towards the caregiving staff and break off treatments before completion. Such individuals may accuse the staff of causing the difficulty and creating the discomfort and, thus, they must avoid them. They cannot tolerate the feeling that they are not in control of their bodies and its responses. (“I think they made a mistake and gave me the wrong medicine or too much of the medicine”. “I was sick as a dog”. “Radiation therapy is giving me more cancer than it’s removing”. “The treatment is worse than the disease”.) Simple straightforward explanations and discussions of what to expect in advance of treatment go a long way in undercutting the projection of discomfort when it occurs during treatment. Adolescents and young adults have difficulty remaining in the active patient role for any length of time since they have difficulty accepting that they are not healthy and strong. Prolonged periods of radiation or chemotherapy are very difficult to tolerate psychologically. They feel they have no way of adapting to what they consider is an assault on their developing or recently achieved sense of independence, self-identity, and bodily pride. They have difficulty allowing others to help plan their lives and give them the attention they need since it is reminiscent of the stage of life they worked so hard to leave
518
Radiation Oncology 0 Biology 0 Physics
behind-childhood. Frequently, the experience of an initial course or courses of treatment will make a young adult decide if he does have arecurrence he would rather let the disease run its course than ahow retreatment of the disease. One young lady with a stage II (b) Hodgkin’s, had a cervical node removed leaving a visible scar on her neck; radiation therapy had produced changes in skin color, and had left a staging laparotomy tell-tale abdominal scar. She said she could not go through the humiliation experienced again. “I looked like a mangled piece of meat when they got through with me”. Such patients, particularly if they have had pronounced side reactions or discomfort from the initial courses of chemotherapy or a prolonged period of having no hair, may decide the treatments are more than they can consider repeating. When the chips are down and recurrences do occur, however, many patients who at one time or another, have said “never again” are of a different mind and elect to be treated again. Frequently, their attitude changes to one of “to live is better than not to live at all”. Those who are older, nearing retirement or already retired, may feel they have lived their life and will be reluctant to receive treatment for recurrences or metastases. They may have accepted an initial course of treatment in the hopes that this was going to produce a cure or a least a prolonged period of comfortable living. If such a period has passed or has not come to pass, they may be unwilling to undergo further treatment, particularly if they expect that a further period of discomfort or periods of disability are involved. The treating physician must respect this attitude and point of view. Frequently, the patient will have a greater peace of mind and confidence in the oncologist and his treatments after the physician shares an understanding of this behavior and allows the patient to express his reluctance to continue living at any price, or, postpones temporarily, the treatments while he discusses the matter with others, or has further consultation or opportunity to consider the consequences of alternatives before a final decision is made. The overprotective parents of a child who
March-April
1976, Vol. 1, Number 5 and Number 6
has a recurrence or the grown children of an aging parent, may create special kinds of problems for the treating physician. The parents of a young child may be so wrapped up in the hopes for the child that they feel there is no expense too great to see that the child gets the best possible care. Thus, they may be unwilling to accept whatever facilities and care that can be provided locally no matter how good they may be. The grown children of aging parents may feel a certain need to atone for transgressions or omissions in their past relationships with their parents; they may be driven to seek out the latest or best and make demands on the physician and care giving system that they would not otherwise make in order to assuage their own unconscious needs to be sure they do not neglect or in any way prevent the parent from receiving the best possible therapy. The child, as well as the aged parent with overprotective family members, are usually acutely sensitive to the psychological distress which the family members are experiencing. Their own concern is heightened when they depend on these family members for their well-being. Such patients and family members require a great deal of support. Not infrequently, this is a setting in which pain, that has been controlled readily by analgesics, becomes intractibie to even the strongest narcotic. A pain management program, which includes the giving of the pain medication on a fixed interval schedule and separating all interpersonal relating from the giving of the medication frequently is an effective way of quickly reducing the intractible quality of the pain.’ Once the panic associated with what the patient assumes is a situation that is out of control can be reduced by the orderly approach to the problem the patient gives up his insatiable demand for attention and in turn gives up his preoccupation with his sense of discomfort. There are many ways in which the physician can reassure and support the patient and his family. One of the most effective and important means of communicating is by letting the patient know he can reach his physician or a colleague by telephone. Most physicians, who have not tried this, are afraid to give the patient
Phychological
reactions to recurrences.
metastases
his family a direct line to their own personal lives. Experience has shown, however, that just to know one has the opportunity to call the physician if he needs to is reassuring. After an initial call or two to check on the physician’s veracity and once convinced the physician will make good on his word, most patients rarely, if ever, call. The use of the telephone to check on a medication or treatment reaction, the prescription in the patient’s wallet for nausea, vomiting or diarrhea are important parts of the therapeutic armamentarium for the treating oncologist. who has to be prepared to deal with the patient’s periods of panic, despair and even simple uncertainty.
and
IATROGENIC
CONCERNS OF THE PATIENT Most physicians are not aware of the importance patients place on their every word, particularly when they are uttered in a time of a health crisis. Casual comments about the seriousness of the disease or the unduly optimistic, “This is not going to be any problem”, or “I certainly didn’t expect this to happen”. may create false optimism about the future on one hand while increasing the patient’s concern about his condition on the other. Knowing the psychological importance of his words, the physician can utilize them in reinforcing the positive aspects of the therapy and giving the patient the optimum outlook for doing as much as he feels comfortable doing and for as long as he feels like doing it. As the disease becomes more obviously irreversible and progressive, it is important to be able to listen to the concerns of the patient and family and to indeed confirm their awareness that things are not getting better. At this time there still are means by which the patient can be kept comfortable; at times, the tumor can be reduced and life prolonged. Of greatest importance at this stage, however, is for the patient to know that the physician is not going to abandon him or his family, but will remain in contact and available to discuss concerns, provide comfort, and help them die when the time comes. As physicians, many of whom have gone
or disseminated
cancer 0 A. H.
SCHMALE
519
into the field of medicine because of their own anxiety about health and life, it is difficult to deal with the dying; indeed medical schools are recognizing this and are giving students an opportunity to discuss and understand the importance of relating to patients who are dying without feeling that they have failed or that to attend the dying is a waste of the physician’s time or not something he should be concerned about. It can be reassuring for the patient to have a very prescribed schedule of feedings, medication, visitors, etc. so that he knows what to expect at various points in time, particularly when life and control of his destiny seems to be waning. The physician should take the lead in working with others who are providing care to the patient, in having an open exchange about their concerns for the patient and whether the patient is receiving the optimum care. It is important for the stall to be able to tolerate their own feelings, frustrations, and helplessness as well as those expressed by the patient and family. Suicide is an often talked about but rarely implemented consequence of recurrent and disseminated cancer. Farberow, Shneidman and Leonard, in reviewing Veterans Hospitals experience for 1955-60 found 32 instances. Older men with cancer of the throat, young men with Hodgkin’s disease or leukemia, and individuals of any age with severe anxiety, low tolerance for pain and no emotional support had the highest suicide potential.’ The specific types of reactions and the intensity of the reaction that is experienced at the time of a recurrence depends on the individual’s past personal experiences as well as the setting in which the recurrence takes place. Age, areas of responsibility, family, social and work roles, as well as goals and hopes for the future influence how the individual reacts. The cancer patient’s ability to cope more effectively will be increased if the physician and other health professionals anticipate and discuss his concerns and anxieties with him. When the physician is more comfortable and confident about his role, his treatment, and his life, he can listen and respond to his patients fears and fantasies more appropriately.
520
Radiation Oncology 0 Biology 0 Physics
March-April
1976, Vol. 1, Number 5 and Number 6
REFERENCES 1. Farberow, N.L., Shneidman, ES., Leonard, C.V.: Suicide Among Patients with Malignant Neoplasms. The Psychology of Suicide, New York Science House, New York, 1970, pp. 325-344. 2. Grant, R.N., Bartlett, I.: Unproven Methods of Cancer Management. American Cancer Society, New York, 1971.
3. Richards, A.I., Schmale, A.H.: Psychosocial conference in medical oncology: Role in training program. Ann. Intern. Med. 80: 541-545, 1974. 4. Weisman, A.D.: On Dying and Denying: A Psychiatric Study of Terminality. Behavioral Publications, New York, 1972, pp. 102-118.
Oncology Biol. Phgs.. 1976, Vol.
I. pp. 515-520.
PSYCHOLOGICAL METASTASES
Pergamon Press.
Printed in the U.S.A.
REACTIONS TO RECURRENCES, OR DISSEMINATED CANCER
ARTHUR H. SCHMALE, M.D. University of Rochester, Medical Center, Strong Memorial Hospital, 601 Elmwood Avenue, Rochester, NY 14642, U.S.A. Recurrences,
Metastases,
Disseminated
disease, Psychological
The most common psychological meaning of the first recurrence of disease of any kind is that something has gone wrong, things are out of control. The previous therapy has been inadequate, host resistance has gotten lower, or the disease is more powerful than previously expected. When the diagnosis of the disease that has recurred is a form of cancer. the concerns are magnified many fold. The immediate and almost universal assumption to the diagnosis of cancer is that life itself is being threatened. Following the initial treatment, the anxiety and dread concerning dying disappears and is replaced by a strong sense of relief and a belief that everything is going to be all right. This profound feeling of having made it, of having disproved the worst fears, is experienced by the patient even when he has been told previously that the treatment was palliative and not curative or that the evidence of disease was extensive. The evidence of local, regional, or widespread recurrence of cancer will reopen old psychological wounds. Whatever reactions the patient experienced initially in relation to the diagnosis may occur again with the thought that his previous fantasies of what was the worst possible that could happen now has become a reality. The distress created may lead to behaviors and activities which interfere with the patient’s seeking and receiving effective medical care. Perhaps the greatest number of patients who tend to delay scheduling a visit to their physician to check out their suspicions do so because they are afraid to have their thoughts and feelings become a reality. They cannot deny the return or spread
reactions.
of the disease once confirmed by the physician. Thus, as long as their awareness has not be confirmed by the professional, it still remains non-real, a possible fantasy and deniable. (“It’s just a swollen node”; “Losing weight because I’ve been too busy to eat a good diet”: “My shoulder hurts; I must have strained myself”.) Some patients will blame the recurrence on the physician who treated them initially. The treatment must have been inadequate. Thus, there is no reason to return, for what they rationalize will be further ineffective treatment. Other patients are skeptical about what medicine and doctors can do for treating cancer. These individuals may have felt pressured into an initial course of treatment in the hopes that they were going to be one of the lucky ones that the great new drugs would cure. Once they recognize that this did not happen, they, much more directly, bypass the available medical resources for further care and go more directly to those who offer a cure based on what they consider more natural means (cures based on prayer, faith healing, the additions of various kinds of vitamins or foods to the diet, or extracts of particular plants or hormones administered by various routes). Large sums of money may be spent in trying various preparations or traveling to distant places for the help of those individuals who make a business of offering cures for cancer. Not infrequently, patients, with the knowledge and consent of their families, dutifully follow the medical regime prescribed by their oncologist. while secretly, or without telling their physician, also take a
516
Radiation Oncology ??Biology 0 Physics
worthless remedy they are convinced is going to be the effective means of cure. For the physician to know that patients and families frequently are psychologically vulnerable to such schemes at a time a recurrence of metastatic lesion is discovered, makes it possible to reduce the attractiveness of such unscientific alternatives.* From a psychological point of view, it is not difficult to understand why many cancer patients have such an intense desire to believe in the possibility of a magical cure, since most people who get cancer have no knowledge of how they got it, what they can do to facilitate its treatment, or what they can do to prevent its recurrence or spread. In essence, it is a disease over which the patient has little or no control. Knowing that a patient will look for something dramatic at a time when his life seems threatened, allows the doctor to discuss with the patient the possibility that he anticipates that he will be tempted to try things that are tauted by friends and loved ones as possible cures. The physician, after indicating his awareness and understanding that such might occur, should be prepared to let the patient acknowledge or deny such thoughts or actions he has had or taken in this regard. If the patient indicates he has heard about a new approach, it is important to elicit what he has heard, what he thinks, and what he is inclined to do about what he has heard. In turn, the physician should follow by indicating his knowledge about the procedure or substance and its therapeutic value, or if it is unknown to him, his willingness to investigate and report back to the patient. It is reassuring for the patient and family for the physician to tell the patient that he is interested in knowing about all such possible cures of cancer, so he can check them out, not only a service to the patient but also for other patients and for himself. This approach opens the door for the patient to bring to the physician any and all concerns or information about any therapies or remedies he may hear or read about. If the physician suggests that the patient have a consultation with another oncologist or indicates that the patient’s problem is being reviewed by a multidisciplinary team, at the
LMarch-April 1976, Vol. 1, Number 5 and Number 6
time of a recurrence or the appearance of a metastatic lesion the patient will be reassured that the physician is not depending solely on his own opinion or expertise. The physician is mindful of the patient’s concern that there may be other things that should be tried or done. Such action demonstrates that the physician is leaving no stone unturned to give the patient the best possible chance for remission and cure. There also are patients, who because of their personality characteristics, blame themselves for the recurrence or spread. They can trace it back to earlier experiences (ate the army food, inhaled those fumes, didn’t take care of myself, etc.). Because of these feelings, they, too, delay seeking help. The evidence of metastases or widespread disease reinforces what they had already believed about themselves; “I’m not worth bothering with or don’t deserve good health or a long life”. For those individuals who are informed that they have evidence of metastatic or widespread disease from the time of the initial diagnosis, the fear of dying is not simply a fantasied fear, but a real threat. Knowing the reality frequently is less painful than living with the fantasies of the unknown. If such widespread disease has a prolonged quiescent period as a result of treatment, some will become suspicious and apprehensive with every ache and pain-“It’s like living on top of a powder keg, a timebomb. You don’t know when it’s going to go off and destroy you”. Most, even when the disease is slowly progressive in spite of therapy, do not maintain these thoughts continuously, but engage in what Weisman calls denial of implications-life goes on with, “thoughts of retirement in two years”, or “my husband is the one who is really sick” or “everyone dies sometime”. The awareness of the disease and its extent is present only intermittently.4 Most individuals living in the United States in 1976 are interested in knowing their diagnosis and the extent to which the cancer is affecting their body and their chances for survival. Initially, they may be profoundly upset and disturbed by being given this knowledge. However, being informed gives
Psychological
reactions to recurrences.
metastases
an opportunity to make decisions and select options for action--to actually try various courses of action and see which is most effective for them. These actions may involve decisions about their disease, the choice of treatment available, and what they want to do with their lives in general. Some individuals, including those with strong religious beliefs and intense family ties, are extremely dependent and have great difficulty in handling the knowledge of the extent of their disease and even at times facing the fact that they have a diagnosis of cancer. In such situations the family members frequently will be of similar psychological dispositions and will express a wish that the actual diagnosis should not be made known to the patient and to others in the family because, “They could not take it; Don’t know what they would do, maybe go berserk; They might even kill themselves; or It is God’s will and maybe this is God’s way of trying to test our faith”. More often than not, it is the relative on whom the patient has been dependent who does not want the information given to the patient. It is the relative who cannot bear to discuss it with the patient. The physician has to be guided by the patient’s requests and actions. Some patients, who say they want to know, will not even acknowledge they have heard when they have been told. Such individuals may insist that information is being kept from them and insist that no one tells them anything when such is not so. Such a response indicates how one part of the mind protects the individual from that with which it cannot cope; even when intellectually the knowledge is thought to be important when the answer is given it may be blocked out as if it wasn’t heard.
them
PSYCHOLOGICAL REACTION TO THE THERAPY Therapy for cancer, particularly metastatic or widespread forms of the disease, usually includes a complex combination of therapies involving drugs and sometimes radiation therapy, and surgery. If treatment is carried out at one of the cancer centers, the patient may fit the criteria for participation in one of the cooperative treatment protocoJs designed for study of new drugs or procedures and
or disseminated
cancer 0 A. H. SCHMALE
517
combinations thereof. These therapies, designed to reduce the tumor burden if not to eradicate it, extend over prolonged periods of time and create side effects in the surrounding systems and tissues. The treatments cause intermittent and sometimes prolonged periods of familial, social and work disability. Treatments which cause toxic side effects, particularly to the bone marrow and to the G.I. tract, may not only reduce the individual’s capacity to fight off infections but also to cope psychologically. What was tolerable in terms of uncertainty before, now may create more disability than the self-esteem, self-concept, self-prognosis can take. The rigid individual, who also is basically dependent, may have learned to adjust to inadequacies with a very aggressive pseudoindependent approach to problems. At the time of a recurrence of cancer such a person may become belligerent towards the caregiving staff and break off treatments before completion. Such individuals may accuse the staff of causing the difficulty and creating the discomfort and, thus, they must avoid them. They cannot tolerate the feeling that they are not in control of their bodies and its responses. (“I think they made a mistake and gave me the wrong medicine or too much of the medicine”. “I was sick as a dog”. “Radiation therapy is giving me more cancer than it’s removing”. “The treatment is worse than the disease”.) Simple straightforward explanations and discussions of what to expect in advance of treatment go a long way in undercutting the projection of discomfort when it occurs during treatment. Adolescents and young adults have difficulty remaining in the active patient role for any length of time since they have difficulty accepting that they are not healthy and strong. Prolonged periods of radiation or chemotherapy are very difficult to tolerate psychologically. They feel they have no way of adapting to what they consider is an assault on their developing or recently achieved sense of independence, self-identity, and bodily pride. They have difficulty allowing others to help plan their lives and give them the attention they need since it is reminiscent of the stage of life they worked so hard to leave
518
Radiation Oncology 0 Biology 0 Physics
behind-childhood. Frequently, the experience of an initial course or courses of treatment will make a young adult decide if he does have arecurrence he would rather let the disease run its course than ahow retreatment of the disease. One young lady with a stage II (b) Hodgkin’s, had a cervical node removed leaving a visible scar on her neck; radiation therapy had produced changes in skin color, and had left a staging laparotomy tell-tale abdominal scar. She said she could not go through the humiliation experienced again. “I looked like a mangled piece of meat when they got through with me”. Such patients, particularly if they have had pronounced side reactions or discomfort from the initial courses of chemotherapy or a prolonged period of having no hair, may decide the treatments are more than they can consider repeating. When the chips are down and recurrences do occur, however, many patients who at one time or another, have said “never again” are of a different mind and elect to be treated again. Frequently, their attitude changes to one of “to live is better than not to live at all”. Those who are older, nearing retirement or already retired, may feel they have lived their life and will be reluctant to receive treatment for recurrences or metastases. They may have accepted an initial course of treatment in the hopes that this was going to produce a cure or a least a prolonged period of comfortable living. If such a period has passed or has not come to pass, they may be unwilling to undergo further treatment, particularly if they expect that a further period of discomfort or periods of disability are involved. The treating physician must respect this attitude and point of view. Frequently, the patient will have a greater peace of mind and confidence in the oncologist and his treatments after the physician shares an understanding of this behavior and allows the patient to express his reluctance to continue living at any price, or, postpones temporarily, the treatments while he discusses the matter with others, or has further consultation or opportunity to consider the consequences of alternatives before a final decision is made. The overprotective parents of a child who
March-April
1976, Vol. 1, Number 5 and Number 6
has a recurrence or the grown children of an aging parent, may create special kinds of problems for the treating physician. The parents of a young child may be so wrapped up in the hopes for the child that they feel there is no expense too great to see that the child gets the best possible care. Thus, they may be unwilling to accept whatever facilities and care that can be provided locally no matter how good they may be. The grown children of aging parents may feel a certain need to atone for transgressions or omissions in their past relationships with their parents; they may be driven to seek out the latest or best and make demands on the physician and care giving system that they would not otherwise make in order to assuage their own unconscious needs to be sure they do not neglect or in any way prevent the parent from receiving the best possible therapy. The child, as well as the aged parent with overprotective family members, are usually acutely sensitive to the psychological distress which the family members are experiencing. Their own concern is heightened when they depend on these family members for their well-being. Such patients and family members require a great deal of support. Not infrequently, this is a setting in which pain, that has been controlled readily by analgesics, becomes intractibie to even the strongest narcotic. A pain management program, which includes the giving of the pain medication on a fixed interval schedule and separating all interpersonal relating from the giving of the medication frequently is an effective way of quickly reducing the intractible quality of the pain.’ Once the panic associated with what the patient assumes is a situation that is out of control can be reduced by the orderly approach to the problem the patient gives up his insatiable demand for attention and in turn gives up his preoccupation with his sense of discomfort. There are many ways in which the physician can reassure and support the patient and his family. One of the most effective and important means of communicating is by letting the patient know he can reach his physician or a colleague by telephone. Most physicians, who have not tried this, are afraid to give the patient
Phychological
reactions to recurrences.
metastases
his family a direct line to their own personal lives. Experience has shown, however, that just to know one has the opportunity to call the physician if he needs to is reassuring. After an initial call or two to check on the physician’s veracity and once convinced the physician will make good on his word, most patients rarely, if ever, call. The use of the telephone to check on a medication or treatment reaction, the prescription in the patient’s wallet for nausea, vomiting or diarrhea are important parts of the therapeutic armamentarium for the treating oncologist. who has to be prepared to deal with the patient’s periods of panic, despair and even simple uncertainty.
and
IATROGENIC
CONCERNS OF THE PATIENT Most physicians are not aware of the importance patients place on their every word, particularly when they are uttered in a time of a health crisis. Casual comments about the seriousness of the disease or the unduly optimistic, “This is not going to be any problem”, or “I certainly didn’t expect this to happen”. may create false optimism about the future on one hand while increasing the patient’s concern about his condition on the other. Knowing the psychological importance of his words, the physician can utilize them in reinforcing the positive aspects of the therapy and giving the patient the optimum outlook for doing as much as he feels comfortable doing and for as long as he feels like doing it. As the disease becomes more obviously irreversible and progressive, it is important to be able to listen to the concerns of the patient and family and to indeed confirm their awareness that things are not getting better. At this time there still are means by which the patient can be kept comfortable; at times, the tumor can be reduced and life prolonged. Of greatest importance at this stage, however, is for the patient to know that the physician is not going to abandon him or his family, but will remain in contact and available to discuss concerns, provide comfort, and help them die when the time comes. As physicians, many of whom have gone
or disseminated
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into the field of medicine because of their own anxiety about health and life, it is difficult to deal with the dying; indeed medical schools are recognizing this and are giving students an opportunity to discuss and understand the importance of relating to patients who are dying without feeling that they have failed or that to attend the dying is a waste of the physician’s time or not something he should be concerned about. It can be reassuring for the patient to have a very prescribed schedule of feedings, medication, visitors, etc. so that he knows what to expect at various points in time, particularly when life and control of his destiny seems to be waning. The physician should take the lead in working with others who are providing care to the patient, in having an open exchange about their concerns for the patient and whether the patient is receiving the optimum care. It is important for the stall to be able to tolerate their own feelings, frustrations, and helplessness as well as those expressed by the patient and family. Suicide is an often talked about but rarely implemented consequence of recurrent and disseminated cancer. Farberow, Shneidman and Leonard, in reviewing Veterans Hospitals experience for 1955-60 found 32 instances. Older men with cancer of the throat, young men with Hodgkin’s disease or leukemia, and individuals of any age with severe anxiety, low tolerance for pain and no emotional support had the highest suicide potential.’ The specific types of reactions and the intensity of the reaction that is experienced at the time of a recurrence depends on the individual’s past personal experiences as well as the setting in which the recurrence takes place. Age, areas of responsibility, family, social and work roles, as well as goals and hopes for the future influence how the individual reacts. The cancer patient’s ability to cope more effectively will be increased if the physician and other health professionals anticipate and discuss his concerns and anxieties with him. When the physician is more comfortable and confident about his role, his treatment, and his life, he can listen and respond to his patients fears and fantasies more appropriately.
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1976, Vol. 1, Number 5 and Number 6
REFERENCES 1. Farberow, N.L., Shneidman, ES., Leonard, C.V.: Suicide Among Patients with Malignant Neoplasms. The Psychology of Suicide, New York Science House, New York, 1970, pp. 325-344. 2. Grant, R.N., Bartlett, I.: Unproven Methods of Cancer Management. American Cancer Society, New York, 1971.
3. Richards, A.I., Schmale, A.H.: Psychosocial conference in medical oncology: Role in training program. Ann. Intern. Med. 80: 541-545, 1974. 4. Weisman, A.D.: On Dying and Denying: A Psychiatric Study of Terminality. Behavioral Publications, New York, 1972, pp. 102-118.
