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Helping the family cope with childhood cancer
F. LEONARD JOHNSON, M.D. LAURA A. RUDOLPH, M.S.W. JOHN R. HARTMANN, M.D.
Helping the family cope with childhood cancer Recent advances in the treatment of childhood cancer have not only increased the possibility of cure and a normal life span for the patient, but have also introduced new stresses for the families of these patients. The authors describe methods of coping with some of these problems during the three most stressful periods-at time of diagnosis, when complications arise, and when treatment fails.
ABSTRACT:
The past two decades have witnessed many changes in our therapeutic approach to the child with cancer, as we have developed new chemothera peu tic agen ts and learned how to use them better in combinations with other drugs, surgery, and radiotherapy.' In acute lymphoblastic leukemia, the most common form of childhood cancer, the prognosis has changed drastically since the mid 1960s, when over 90% of patients faced certain death within three years. Today, at least 50% of all children finish treatment from three to five years after diagnosis without hav-
ing a recurrence of disease. The majority of children with localized Wilms' tumor, rhabdomyosarcoma, Hodgkin's disease, nonHodgkin's lymphoma, and Ewing's sarcoma can now anticipate the possibility of cure and a normal life span. These advances, however, have added new stresses. Childhood cancer can no longer be considered as invariably fatal; rather, for most children, it is now a chronic illness with the prospect of several years of treatment, even if the cancer is not finally cured. The situation has changed from anticipation of cer-
Dr. Johnson is associate professor ofpediatrics at the University of Washington. He is staffphysician, Ms. Rudolph is a social worker, and Dr. Hartmann is director, division ofoncology, at Children's Orthopedic Hospital and Medical Center, Seal/Ie. Reprint requests to Dr. Johnson, 4800 Sand Point Way NE, Seal/Ie, WA 98105. APRIL 1979' VOL 20' NO 4
tain death to anticipation of the possibility of a normal life span- a possibility that is, however, surrounded by uncertainty [see Psychosomatics 19:743, 1978: editorial). Even when a malignant disease is apparently under complete control and the child appears normal in every respect, that does not necessarily ease the strain-it may only give a sense of temporary relief, with false hope and security. The most stressful periods for the family ofa child with cancer are the times when cancer is diagnosed, complications occur, therapy fails and the child dies. 2 In order to illustrate many of the stresses facing the family with cancer, we will describe our experience at the Children's Orthopedic Hospital and Medical Center (COHMC), with particular emphasis on stresses at the time of diagnosis and when complications occur. Diagnosis and treatment: reactions The time of diagnosis is a particularly difficult period because the parents, already numbed by the shock, are expected to absorb and assume a whole new vocabulary of 241
Childhood cancer
confusing medical terms and understand complicated drug therapy. At this same stressful time, the parents are called upon to provide emotional support for their sick child. 3 Response varies from uncontrollable grief to philosophical acceptance, and from deep feelings of guilt to hostility toward the physicians confirming the diagnosis. Each of these reactions is normal, and is based on such factors as the family's background, personalities, and current economic and social situations.2•s In helping the family at this time, one must realize that such responses exist, that there is no average reaction, and that there may be many other concomitant stresses. The keys to easing this initial stress are gentle, honest communication; patience; empathy; and education. Preconceived ideas about cancer will often modify and perhaps distort the parent's perceptions in the initial discussion following diagnosis. Despite the most reassuring information about the probability of long-term survival and even possible cure, the only information that parents may take from this initial conference is the certainty that their child has cancer and is going to die. Hence, many long discussions m~y be necessary to give the parents a realistic expectation for the future. In a mail survey of 165 families of children with cancer being treated in our division, 39% of parents found "unanswered medical questions" a major source of stress during the course of their child's disease. Therefore, it is essential to tailor the early discussions to the level of understanding of the parent or parents in order to educate them about aU aspects of their child's APRIL 1979 • VOL 20 • NO 4
illness-including both medical and psychological aspects. One of the parents' major fears is how the child will cope; and usually, such fears are much worse than fact. Often the child will only want a straight answer to a straight question, usually without going into details regarding the specific prognosis of the illness or questions of death. Telling the child the diagnosis in terms he or she can understand helps alleviate much of the family stress because it paves the way for more open communication within the family-an extremely important factor after the child has been discharged from the hospital. If future emotional support is to be effective, the physician must be
The only information that parents may tilke from the initial conference is that their child has cancer and is going to die. honest and straightforward in dealing with an adolescent, especially if therapy fails. The physician or the parents (or both together) should tell the child gently and quietly, stressing that he or she is not alone with the disease, and emphasizing the positive aspects of what will be attempted to eradicate it. Many adolescents will raise the question of whether they are going to die and, if so, how soon. Because of that question, parents and physicians have in the past avoided telling older children the diagnosis, only to find out that the child had already discovered it. A result of such evasion, however well motivated, was that all roads of communication were blocked, especially when they were needed
most-when things went wrong. Attention to the needs of the patient greatly helps reduce the overaU grief faced by a family, and increases family stability. It is important to realize that all children with cancer face a loss of self-esteem associated with loss of control of their lives imposed by constant medical attention and, often, an actual change in physical image associated with therapy. The child's age is a factor here. For example, hair loss can be particularly disturbing to an adolescen t girl, whereas in a three-year-old boy it is not as serious a problem. Considerable reassurance is needed, as well, for patients facing severe stress because of amputation for osteogenic sarcoma or the cushingoid side-effects of prednisone. Our parent survey further indicated that exclusion of the child from certain normal activities during times of low blood counts, or because of the need for other therapy, constituted a significant stress for 53% of families; the side-effects of therapy were particularly difficult for 69% offamilies; and 73% of families found the children's reaction to treatment presented major problems. It is extremely important to stress to the parents the need to treat the child as normally as possible, but still to take into consideration the seriousness of the illness. Sometimes, in an attempt to help the child, parents may become overprotective or excessively generous, tactics which not only further diminish the control of the older child but also often cause resentment in other members of the family. Van Eys6 recently reviewed areas in which the experience of having cancer in childhood may be unique. It is equally important to warn 245
Childhood cancer
parents ahead of time concerning potential reactions of siblings. In one of the earliest studies of families with cancer, Binger and his colleagues7 found that 50% of siblings suffered emotional problems. Therefore, it is important that the physician and other members of the care team speak to the child's siblings, educating them to their level of understanding as to the nature of the disease. A vicious cycle of resentment and then guilt might otherwise be established when the child with cancer receives special attention. 5 Siblings may also fear contracting the same disease if there is not open discussion of the nature of the particular malignancy, with special emphasis given to the fact that it is not contagious. Awareness, prevention, and education are keys to handling stress for the entire family and are essential to ensure communication between parents as they deal with the diagnosis of cancer. In a study of the parents of children who have died ofleukemia, Lewis8 found that the experience had either no effect or a positive effect on the marriage. Although there is a general assumption that the rate of divorce is higher than normal among the parents of children with cancer,2 the majority of marriages ending in divorce after such a diagnosis were already in trouble at the time the diagnosis was made. Attempts to reconcile parents who already are having marital difficulties, in an effort to give a child "a normal home," rarely work. 2 Because the burden of day-today care of the child falls on the mother, it is essential that the father be present in as many early discussions as possible to enable him both to express his particular worries
and to understand the day-to-day responsibilities that his wife will have while looking after their child. The present trend of centralizing cancer care has introduced new, unique problems for the family. Among these are traveling long distances to a treatment center; locating accommodations near the treatment center; finding transportation to and from the hospital; and obtaining babysitting for siblings. At the COHMC, attempts are made to alleviate these stresses through the help of the national parents' organization, The Candlelighters, and The American Cancer Society.9.10 Despite such help, however, the parent survey indicated
Many parents point to the time ofrelllpse as the most difficult period in the whole course ofthe child's illness. that 53% of our families still found the financial burden a significant stress. Another crisis-provoking aspect of treatment in major centers is the necessity for the family not only to give informed consent to extremely complicated therapy, but also to consent to randomization, with the implication that the best method to treat their child's illness is still to be discovered. The element of "chance" in the child's treatment only compounds the problems at the time of initial diagnosis. Equally disturbing for many parents are consent forms that spell out every known side-effect of drugs that will be used. It is important to emphasize to the parents that no one child develops all sideeffects of these agents. When sig-
nificant side-effects do occur, however, establishment of honest and open communication among all involved in the care of the child and the family is absolutely necessary. A case from our center illustrates one approach. Maria Maria, aged 14 years, lives with her mother, father, three brothers (ages 5, 15, 16), and one sister (age 17) in a small town 250 miles from the COHMC. The family is of Mexican descent. In September 1977, Maria, then 13 years old, presented to her local doctor with a six-week history of lethargy, arthralgias, easy bruising, and low-grade fever. A complete blood count revealed pancytopenia, and she was referred to COHMC for evaluation. Bonemarrow aspiration confirmed the diagnosis of acute lymphoblastic leukemia. At the time of Maria's diagnosis, the family was experiencing many other problems. They had no savings and no health insurance. The 16-year-old brother suffered from chronic asthma and had a long history of emotional and behavioral problems. Interpersonal problems existed between the 17year-old daughter and her father. Chronic marital problems existed and the mother was thinking about divorce. The mother took major responsibility for the welfare of her family, because the father had an irregular work history with intervening bouts of drinking. The obvious hostility between the parents caused much tension and inconsistency in their dealings with their children. Complications Maria's course was not to be uncomplicated. After five doses of Lasparaginase given as part of her PSYCHOSOMATICS
induction therapy, the patient developed almost total necrosis of her pancreas and iatrogenic diabetes. This led to a three-month hospitalization and further complications of multiple abdominal abscesses and a subphrenic abscess. During this time she required two laparotomies, hyperalimentation, and considerable medical and psychosocial support. Emotionally, Maria, having been given the expectation of a rapid return to health, and having observed other children diagnosed with the same disease now recovering without problems, not unexpectedly became withdrawn, depressed, and hostile. During the hospitalization, her mother became depr,essed, frustrated, and guilty. She was worried about the care her husband was giving the other children at home and felt guilty for not being able to handle everything. After all the reassurances given at the time of diagnosis, she became scared and confused about her daughter's medical and emotional condition. The staff devoted considerable time, support, and patience to the family to help them understand the extremely complex medical situation. In particular, the nurse coordinator of our division had daily contact with the family, educating them about the disease, the treatment, and the complications. Another practical problem involved intensive work with the family, and the dietary department of the hospital centered on Maria's nutritional needs. In fact, proper dietary intake, particularly before and after insertion of the hyperalimentation line, was a tremendous stress for the family because of Maria's constant pain and vomiting. Often her refusal to eat appeared to be a form of manipulaAPRIL 1979 • VOL 20 • NO 4
tion and expression of her anger and frustration. The mother particularly needed support and reassurance from the physicians and nurses during this time because the way she viewed herself as a "good parent" revolved largely around providing her children with plenty of food. Maria's difficulty with eating made her feel increasingly guilty. A IS-year-old patient being treated in our clinic for Hodgkin's disease visited Maria regularly, offering support and help when it was most needed. We have found that utilizing the resources of the children themselves is an effective way of dealing with some of the emotional stresses. Giving a newly
A Uention to the needs ofthe patient greatly helps reduce the overaO grieffaced by the family and increase family stability. diagnosed adolescent the opportunity to talk with another adolescent who "has been there" can sometimes have a greater impact than hours of professional contact. The social worker and nurse in the unit also contacted Maria's school to keep it regularly informed of her current condition. They coordinated the services of the hospital teacher with the school counselor in the home community and arranged for a temporary home tutor upon her discharge. Once Maria returned to school, it was also important that her teacher be educated about her disease and specific aspects of treatment and side-effects that might affect her school attendance and work. Assistance from the occupational
therapist, particularly on the days when Maria felt reasonably well, proved helpful and provided an incentive for her to try harder during "rougher" times. The occupational therapist worked daily on an exercise program to maintain muscle strength and coordination. She and the recreation department provided Maria with craft activities, giving her a positive outlet for her anger and frustration. The occupational therapist at COHMC had had osteogenic sarcoma herself as a teenager, going through surgery, radiation, and chemotherapy, and as a result was able to be extremely helpful in providing Maria with regular supportive counseling. Upon Maria's discharge, the family was referred to local resources in the home community for continued support. Despite all her initial problems, Maria has now responded well to therapy and remains in complete remission on maintenance chemotherapy. She has returned to school full time and is now again normally active, with her disease under apparent control. Maria's case is extreme, since most children do not develop such significant side-effects from therapy. Nevertheless, her admission for these complications illustrates many of the support requirements necessary during the care of a child with cancer. The involvement of many disciplines in the care of the child with cancer-a fundamental factor in the markedly improved prognosis-can also create additional problems. In . many oncology centers now, "the patient is outnumbered by staff two or three to one and is often made to feel like part of an anonymous mass.''6 In addition, the perceptions of various people involved in the care of the child can sometimes be 247
Childhood cancer
at conflict; and again, communication not only among staff and patient but also among members of the staff becomes extremely important. When therapy fails The vast majority of families will enter a period when the disease does come under apparent control and, although many children have diseases that now have the potential of cure,' most families still face therapeutic failure and the child's ultimate death. Many parents have pointed to this time of relapse, of recurrence ofcancer, as perhaps the most difficult period in the whole course of a child's illness. 2 When therapy fails, the family goes through stages including shock, denial, anger, bargaining, depression, and acceptance. II There may be the temptation to try an unproven method of cancer treatment, which, in tum, creates only more stress for the family. It is at this time that a pattern of open, honest communication from the beginning asserts itself, allowing the family to express their feelings and be given reassurance that their child is receiving the best currently available therapy. It is absolutely essential to express understanding-never criticismthat the parents are trying to do everything possible for their child. The child no longer responding to treatment needs well-planned supportive care that focuses on giving the young patient as normal a life as possible, with as much comfort as possible. Unlike an adult, a child is often incapable of expressing his or her fears and anxieties. Indeed, a communication problem is often initiated and sustained by well-meaning parents and physi-
APRIL 1979' VOL 20 • NO 4
cians, who, reflecting their own apprehensions concerning death, and frustration that the child has not responded to treatment, tend to shield the child from his or her condition. Binger and his colleagues7 found that children over four years of age appeared aware of the seriousness of their illness and "even anticipated their premature death." Parents found that honest discussion of their child's condition-and this is particularly so with older children-produced a more meaningful relationship with their child "than they had ever experienced before."7 Much of the stress concerning the child's death can be alleviated if the parents realize that many patients have fears and fantasies of how death will occur that are far removed from the actual situation.) In addition, frequently parents must be helped to face the painful dichotomy of their efforts to prepare for the child's death through gradual detachment versus their need to care for the child.6 During this time it is important to allow the parents to take as much active personal care of their child as possible to compensate for the inevitable feeling of loss of control if a child has to be hospitalized for care in the terminal stages. The decision depends on whether the parents feel comfortable in coping with certain responsibilities in the care of their child at this time. Many current efforts center on having the child die in the home, and if that arrangement is medically and emotionally possible, it can ease the stress of the death considerably. Although many physicians are involved in the care of children
treated at the COHMC for cancer, an effort is made to identify a primary physician for each patient. Such identity becomes particularly important in the time prior to the patient's death, with the primary physician helping to provide the emotional support, continuity, consistency, and understanding so necessary at this time. In addition, he can help involve supportive team members to address the many psychosocial stresses that also increase, or contact support services within the community if the child is dying at home. Despite even the most intensive efforts to help families cope with their loss, the fact is that the death of a child who has cancer remains a particularly painful, stressful time for all concerned. 0 REFERENCES 1. Mauer AM, Simone JV, Pratt CB: Current progress in the treatment of the child with cancer. J Pediafr 91:523-539.1977. 2. Koch CB. Herman J. Donaldson MH: Supportive care of the child with cancer and his family. semin OncoI1:81-86. 1974. 3. Johnson FL. Miller MS: A Book for Parents of Children with Leukemia. New York. Hawthorne. Inc. 1975. 4.Dargeon HW: Tumors of Childhood. New York. Paul H Hoeber. Inc. 1960. p 78. 5. Briscoe K: Childhood leukemia. the family disease. Presented at the Midwestern area conference for service. rehabilitation and professional education. Indianapolis. February 10. 1972. 6. Van Eys J: The Truly Cured Child. The New Challenge in Pediatric Cancer Care. Baltimore. Univers~y Park Press. 1977. 7. Binger C. Ablin A, Feuerstein RC. et al: Childhood leukemia: Emotional impact on patients and family. N EnglJ Med280:414-418, 1969. 8. Lewis IC: Leukemia in childhood. its effects on the family. Aust Paediatr J 3:244-247. 1967. 9. Monaco CP: Family support groups, in Proceedings of the American Cancer Society second National Conference on Human Values and Cancer. New York. American Cancer Soc Inc. 1977, pp 36-43. 10. Evans AE: Practical care for the tamily of a child with cancer. Cancer 35:863-1026. 1975. 11. KObler-Ross E: On death and dying. JAMA 221:174-179.1972.
251
Helping the family cope with childhood cancer Recent advances in the treatment of childhood cancer have not only increased the possibility of cure and a normal life span for the patient, but have also introduced new stresses for the families of these patients. The authors describe methods of coping with some of these problems during the three most stressful periods-at time of diagnosis, when complications arise, and when treatment fails.
ABSTRACT:
The past two decades have witnessed many changes in our therapeutic approach to the child with cancer, as we have developed new chemothera peu tic agen ts and learned how to use them better in combinations with other drugs, surgery, and radiotherapy.' In acute lymphoblastic leukemia, the most common form of childhood cancer, the prognosis has changed drastically since the mid 1960s, when over 90% of patients faced certain death within three years. Today, at least 50% of all children finish treatment from three to five years after diagnosis without hav-
ing a recurrence of disease. The majority of children with localized Wilms' tumor, rhabdomyosarcoma, Hodgkin's disease, nonHodgkin's lymphoma, and Ewing's sarcoma can now anticipate the possibility of cure and a normal life span. These advances, however, have added new stresses. Childhood cancer can no longer be considered as invariably fatal; rather, for most children, it is now a chronic illness with the prospect of several years of treatment, even if the cancer is not finally cured. The situation has changed from anticipation of cer-
Dr. Johnson is associate professor ofpediatrics at the University of Washington. He is staffphysician, Ms. Rudolph is a social worker, and Dr. Hartmann is director, division ofoncology, at Children's Orthopedic Hospital and Medical Center, Seal/Ie. Reprint requests to Dr. Johnson, 4800 Sand Point Way NE, Seal/Ie, WA 98105. APRIL 1979' VOL 20' NO 4
tain death to anticipation of the possibility of a normal life span- a possibility that is, however, surrounded by uncertainty [see Psychosomatics 19:743, 1978: editorial). Even when a malignant disease is apparently under complete control and the child appears normal in every respect, that does not necessarily ease the strain-it may only give a sense of temporary relief, with false hope and security. The most stressful periods for the family ofa child with cancer are the times when cancer is diagnosed, complications occur, therapy fails and the child dies. 2 In order to illustrate many of the stresses facing the family with cancer, we will describe our experience at the Children's Orthopedic Hospital and Medical Center (COHMC), with particular emphasis on stresses at the time of diagnosis and when complications occur. Diagnosis and treatment: reactions The time of diagnosis is a particularly difficult period because the parents, already numbed by the shock, are expected to absorb and assume a whole new vocabulary of 241
Childhood cancer
confusing medical terms and understand complicated drug therapy. At this same stressful time, the parents are called upon to provide emotional support for their sick child. 3 Response varies from uncontrollable grief to philosophical acceptance, and from deep feelings of guilt to hostility toward the physicians confirming the diagnosis. Each of these reactions is normal, and is based on such factors as the family's background, personalities, and current economic and social situations.2•s In helping the family at this time, one must realize that such responses exist, that there is no average reaction, and that there may be many other concomitant stresses. The keys to easing this initial stress are gentle, honest communication; patience; empathy; and education. Preconceived ideas about cancer will often modify and perhaps distort the parent's perceptions in the initial discussion following diagnosis. Despite the most reassuring information about the probability of long-term survival and even possible cure, the only information that parents may take from this initial conference is the certainty that their child has cancer and is going to die. Hence, many long discussions m~y be necessary to give the parents a realistic expectation for the future. In a mail survey of 165 families of children with cancer being treated in our division, 39% of parents found "unanswered medical questions" a major source of stress during the course of their child's disease. Therefore, it is essential to tailor the early discussions to the level of understanding of the parent or parents in order to educate them about aU aspects of their child's APRIL 1979 • VOL 20 • NO 4
illness-including both medical and psychological aspects. One of the parents' major fears is how the child will cope; and usually, such fears are much worse than fact. Often the child will only want a straight answer to a straight question, usually without going into details regarding the specific prognosis of the illness or questions of death. Telling the child the diagnosis in terms he or she can understand helps alleviate much of the family stress because it paves the way for more open communication within the family-an extremely important factor after the child has been discharged from the hospital. If future emotional support is to be effective, the physician must be
The only information that parents may tilke from the initial conference is that their child has cancer and is going to die. honest and straightforward in dealing with an adolescent, especially if therapy fails. The physician or the parents (or both together) should tell the child gently and quietly, stressing that he or she is not alone with the disease, and emphasizing the positive aspects of what will be attempted to eradicate it. Many adolescents will raise the question of whether they are going to die and, if so, how soon. Because of that question, parents and physicians have in the past avoided telling older children the diagnosis, only to find out that the child had already discovered it. A result of such evasion, however well motivated, was that all roads of communication were blocked, especially when they were needed
most-when things went wrong. Attention to the needs of the patient greatly helps reduce the overaU grief faced by a family, and increases family stability. It is important to realize that all children with cancer face a loss of self-esteem associated with loss of control of their lives imposed by constant medical attention and, often, an actual change in physical image associated with therapy. The child's age is a factor here. For example, hair loss can be particularly disturbing to an adolescen t girl, whereas in a three-year-old boy it is not as serious a problem. Considerable reassurance is needed, as well, for patients facing severe stress because of amputation for osteogenic sarcoma or the cushingoid side-effects of prednisone. Our parent survey further indicated that exclusion of the child from certain normal activities during times of low blood counts, or because of the need for other therapy, constituted a significant stress for 53% of families; the side-effects of therapy were particularly difficult for 69% offamilies; and 73% of families found the children's reaction to treatment presented major problems. It is extremely important to stress to the parents the need to treat the child as normally as possible, but still to take into consideration the seriousness of the illness. Sometimes, in an attempt to help the child, parents may become overprotective or excessively generous, tactics which not only further diminish the control of the older child but also often cause resentment in other members of the family. Van Eys6 recently reviewed areas in which the experience of having cancer in childhood may be unique. It is equally important to warn 245
Childhood cancer
parents ahead of time concerning potential reactions of siblings. In one of the earliest studies of families with cancer, Binger and his colleagues7 found that 50% of siblings suffered emotional problems. Therefore, it is important that the physician and other members of the care team speak to the child's siblings, educating them to their level of understanding as to the nature of the disease. A vicious cycle of resentment and then guilt might otherwise be established when the child with cancer receives special attention. 5 Siblings may also fear contracting the same disease if there is not open discussion of the nature of the particular malignancy, with special emphasis given to the fact that it is not contagious. Awareness, prevention, and education are keys to handling stress for the entire family and are essential to ensure communication between parents as they deal with the diagnosis of cancer. In a study of the parents of children who have died ofleukemia, Lewis8 found that the experience had either no effect or a positive effect on the marriage. Although there is a general assumption that the rate of divorce is higher than normal among the parents of children with cancer,2 the majority of marriages ending in divorce after such a diagnosis were already in trouble at the time the diagnosis was made. Attempts to reconcile parents who already are having marital difficulties, in an effort to give a child "a normal home," rarely work. 2 Because the burden of day-today care of the child falls on the mother, it is essential that the father be present in as many early discussions as possible to enable him both to express his particular worries
and to understand the day-to-day responsibilities that his wife will have while looking after their child. The present trend of centralizing cancer care has introduced new, unique problems for the family. Among these are traveling long distances to a treatment center; locating accommodations near the treatment center; finding transportation to and from the hospital; and obtaining babysitting for siblings. At the COHMC, attempts are made to alleviate these stresses through the help of the national parents' organization, The Candlelighters, and The American Cancer Society.9.10 Despite such help, however, the parent survey indicated
Many parents point to the time ofrelllpse as the most difficult period in the whole course ofthe child's illness. that 53% of our families still found the financial burden a significant stress. Another crisis-provoking aspect of treatment in major centers is the necessity for the family not only to give informed consent to extremely complicated therapy, but also to consent to randomization, with the implication that the best method to treat their child's illness is still to be discovered. The element of "chance" in the child's treatment only compounds the problems at the time of initial diagnosis. Equally disturbing for many parents are consent forms that spell out every known side-effect of drugs that will be used. It is important to emphasize to the parents that no one child develops all sideeffects of these agents. When sig-
nificant side-effects do occur, however, establishment of honest and open communication among all involved in the care of the child and the family is absolutely necessary. A case from our center illustrates one approach. Maria Maria, aged 14 years, lives with her mother, father, three brothers (ages 5, 15, 16), and one sister (age 17) in a small town 250 miles from the COHMC. The family is of Mexican descent. In September 1977, Maria, then 13 years old, presented to her local doctor with a six-week history of lethargy, arthralgias, easy bruising, and low-grade fever. A complete blood count revealed pancytopenia, and she was referred to COHMC for evaluation. Bonemarrow aspiration confirmed the diagnosis of acute lymphoblastic leukemia. At the time of Maria's diagnosis, the family was experiencing many other problems. They had no savings and no health insurance. The 16-year-old brother suffered from chronic asthma and had a long history of emotional and behavioral problems. Interpersonal problems existed between the 17year-old daughter and her father. Chronic marital problems existed and the mother was thinking about divorce. The mother took major responsibility for the welfare of her family, because the father had an irregular work history with intervening bouts of drinking. The obvious hostility between the parents caused much tension and inconsistency in their dealings with their children. Complications Maria's course was not to be uncomplicated. After five doses of Lasparaginase given as part of her PSYCHOSOMATICS
induction therapy, the patient developed almost total necrosis of her pancreas and iatrogenic diabetes. This led to a three-month hospitalization and further complications of multiple abdominal abscesses and a subphrenic abscess. During this time she required two laparotomies, hyperalimentation, and considerable medical and psychosocial support. Emotionally, Maria, having been given the expectation of a rapid return to health, and having observed other children diagnosed with the same disease now recovering without problems, not unexpectedly became withdrawn, depressed, and hostile. During the hospitalization, her mother became depr,essed, frustrated, and guilty. She was worried about the care her husband was giving the other children at home and felt guilty for not being able to handle everything. After all the reassurances given at the time of diagnosis, she became scared and confused about her daughter's medical and emotional condition. The staff devoted considerable time, support, and patience to the family to help them understand the extremely complex medical situation. In particular, the nurse coordinator of our division had daily contact with the family, educating them about the disease, the treatment, and the complications. Another practical problem involved intensive work with the family, and the dietary department of the hospital centered on Maria's nutritional needs. In fact, proper dietary intake, particularly before and after insertion of the hyperalimentation line, was a tremendous stress for the family because of Maria's constant pain and vomiting. Often her refusal to eat appeared to be a form of manipulaAPRIL 1979 • VOL 20 • NO 4
tion and expression of her anger and frustration. The mother particularly needed support and reassurance from the physicians and nurses during this time because the way she viewed herself as a "good parent" revolved largely around providing her children with plenty of food. Maria's difficulty with eating made her feel increasingly guilty. A IS-year-old patient being treated in our clinic for Hodgkin's disease visited Maria regularly, offering support and help when it was most needed. We have found that utilizing the resources of the children themselves is an effective way of dealing with some of the emotional stresses. Giving a newly
A Uention to the needs ofthe patient greatly helps reduce the overaO grieffaced by the family and increase family stability. diagnosed adolescent the opportunity to talk with another adolescent who "has been there" can sometimes have a greater impact than hours of professional contact. The social worker and nurse in the unit also contacted Maria's school to keep it regularly informed of her current condition. They coordinated the services of the hospital teacher with the school counselor in the home community and arranged for a temporary home tutor upon her discharge. Once Maria returned to school, it was also important that her teacher be educated about her disease and specific aspects of treatment and side-effects that might affect her school attendance and work. Assistance from the occupational
therapist, particularly on the days when Maria felt reasonably well, proved helpful and provided an incentive for her to try harder during "rougher" times. The occupational therapist worked daily on an exercise program to maintain muscle strength and coordination. She and the recreation department provided Maria with craft activities, giving her a positive outlet for her anger and frustration. The occupational therapist at COHMC had had osteogenic sarcoma herself as a teenager, going through surgery, radiation, and chemotherapy, and as a result was able to be extremely helpful in providing Maria with regular supportive counseling. Upon Maria's discharge, the family was referred to local resources in the home community for continued support. Despite all her initial problems, Maria has now responded well to therapy and remains in complete remission on maintenance chemotherapy. She has returned to school full time and is now again normally active, with her disease under apparent control. Maria's case is extreme, since most children do not develop such significant side-effects from therapy. Nevertheless, her admission for these complications illustrates many of the support requirements necessary during the care of a child with cancer. The involvement of many disciplines in the care of the child with cancer-a fundamental factor in the markedly improved prognosis-can also create additional problems. In . many oncology centers now, "the patient is outnumbered by staff two or three to one and is often made to feel like part of an anonymous mass.''6 In addition, the perceptions of various people involved in the care of the child can sometimes be 247
Childhood cancer
at conflict; and again, communication not only among staff and patient but also among members of the staff becomes extremely important. When therapy fails The vast majority of families will enter a period when the disease does come under apparent control and, although many children have diseases that now have the potential of cure,' most families still face therapeutic failure and the child's ultimate death. Many parents have pointed to this time of relapse, of recurrence ofcancer, as perhaps the most difficult period in the whole course of a child's illness. 2 When therapy fails, the family goes through stages including shock, denial, anger, bargaining, depression, and acceptance. II There may be the temptation to try an unproven method of cancer treatment, which, in tum, creates only more stress for the family. It is at this time that a pattern of open, honest communication from the beginning asserts itself, allowing the family to express their feelings and be given reassurance that their child is receiving the best currently available therapy. It is absolutely essential to express understanding-never criticismthat the parents are trying to do everything possible for their child. The child no longer responding to treatment needs well-planned supportive care that focuses on giving the young patient as normal a life as possible, with as much comfort as possible. Unlike an adult, a child is often incapable of expressing his or her fears and anxieties. Indeed, a communication problem is often initiated and sustained by well-meaning parents and physi-
APRIL 1979' VOL 20 • NO 4
cians, who, reflecting their own apprehensions concerning death, and frustration that the child has not responded to treatment, tend to shield the child from his or her condition. Binger and his colleagues7 found that children over four years of age appeared aware of the seriousness of their illness and "even anticipated their premature death." Parents found that honest discussion of their child's condition-and this is particularly so with older children-produced a more meaningful relationship with their child "than they had ever experienced before."7 Much of the stress concerning the child's death can be alleviated if the parents realize that many patients have fears and fantasies of how death will occur that are far removed from the actual situation.) In addition, frequently parents must be helped to face the painful dichotomy of their efforts to prepare for the child's death through gradual detachment versus their need to care for the child.6 During this time it is important to allow the parents to take as much active personal care of their child as possible to compensate for the inevitable feeling of loss of control if a child has to be hospitalized for care in the terminal stages. The decision depends on whether the parents feel comfortable in coping with certain responsibilities in the care of their child at this time. Many current efforts center on having the child die in the home, and if that arrangement is medically and emotionally possible, it can ease the stress of the death considerably. Although many physicians are involved in the care of children
treated at the COHMC for cancer, an effort is made to identify a primary physician for each patient. Such identity becomes particularly important in the time prior to the patient's death, with the primary physician helping to provide the emotional support, continuity, consistency, and understanding so necessary at this time. In addition, he can help involve supportive team members to address the many psychosocial stresses that also increase, or contact support services within the community if the child is dying at home. Despite even the most intensive efforts to help families cope with their loss, the fact is that the death of a child who has cancer remains a particularly painful, stressful time for all concerned. 0 REFERENCES 1. Mauer AM, Simone JV, Pratt CB: Current progress in the treatment of the child with cancer. J Pediafr 91:523-539.1977. 2. Koch CB. Herman J. Donaldson MH: Supportive care of the child with cancer and his family. semin OncoI1:81-86. 1974. 3. Johnson FL. Miller MS: A Book for Parents of Children with Leukemia. New York. Hawthorne. Inc. 1975. 4.Dargeon HW: Tumors of Childhood. New York. Paul H Hoeber. Inc. 1960. p 78. 5. Briscoe K: Childhood leukemia. the family disease. Presented at the Midwestern area conference for service. rehabilitation and professional education. Indianapolis. February 10. 1972. 6. Van Eys J: The Truly Cured Child. The New Challenge in Pediatric Cancer Care. Baltimore. Univers~y Park Press. 1977. 7. Binger C. Ablin A, Feuerstein RC. et al: Childhood leukemia: Emotional impact on patients and family. N EnglJ Med280:414-418, 1969. 8. Lewis IC: Leukemia in childhood. its effects on the family. Aust Paediatr J 3:244-247. 1967. 9. Monaco CP: Family support groups, in Proceedings of the American Cancer Society second National Conference on Human Values and Cancer. New York. American Cancer Soc Inc. 1977, pp 36-43. 10. Evans AE: Practical care for the tamily of a child with cancer. Cancer 35:863-1026. 1975. 11. KObler-Ross E: On death and dying. JAMA 221:174-179.1972.
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