Helping children cope with cancer
Most children diagnosed with cancer will get better. But their long road to recovery requires multidisciplinary treatment for them and their families
Some 400 children in Israel are diagnosed with cancer annually. The diagnosis of this disease causes a total upheaval in the world of the sick child and his family. Dr. Isaac Yaniv, director of the pediatric hemato-oncology department at Schneider Children's Medical Center, says that he will never forget what the father of one leukemia patient told him, a few years after the diagnosis, after the child had recovered. The father said that throughout the whole conversation during which Yaniv told the father about his child's condition, he felt that he was trying to touch the ground with his feet but couldn't.
Due to the tremendous effect cancer has on all aspects of the lives of both the child and his family, the treatment of this disease must be multidisciplinary.
To emphasize the enormous importance of combining all the various fields of treatment, the Hayim (Life) association for children with cancer in Israel held a unique conference. In most cases, explains Dr. Amos Toren, head of the pediatric hemato-oncology department at Sheba Medical Center, professional conferences are very specific; all the participants work in the same field.
What made this conference unique was that for the first time in Israel there was a gathering of professionals from many different fields - pediatric oncologists, nurses, psychiatrists, psychologists, social workers, teachers and others - all of whom had a common goal: treating children recovering from cancer. In multidisciplinary treatment for children with cancer, it is very important that the voice of each of those treating the children be heard.
Even though the doctor is managing the treatment, in many cases other professionals identify various problems that crop up and can contribute to their solution. In order to illustrate the importance of the dialogue between doctors and other staff members, Toren mentions some of the dilemmas that he has encountered during his work. A common challenge in the pediatric oncologist's work is the question of when to discontinue treatment. These days some 80 percent of children with cancer recover; the question arises regarding those who are not so fortunate.
After all the treatment possibilities have been exhausted and it is clear that the chances for recovery are very low, and that any further treatment may extend the child's life for a short while but will not save it, the question of continued therapy, which causes the child suffering, must be answered. Is it worth extending the child's life for a few weeks or months, or is it better to focus on improving the quality of his life during the time he has left, and forgo further treatment? Toren notes that this decision is not made by the doctors alone, but also by social workers and psychologists, as well as the parents, of course.
New technologies that came into use only recently at Sheba hospital provide another example. Bone marrow transplants have a higher success rate when there is a good tissue type match between donor and recipient. When no suitable donor is found for a child, parents can be offered the option of in vitro fertilization and genetic testing of the embryos before they are returned to the womb, with only those that have the best match being used. This way, the child that is born will be both healthy and able to donate bone marrow cells to his ill sibling.
This form of treatment has so far been used once in Israel, although other families are currently undergoing this complicated process, and each case is discussed by a team of professionals.
Many doctors and nurses, but only one social worker
A child who has cancer is treated by several doctors and nurses, says Yaniv, but during all the stages of his treatment he and his family are accompanied by a single social worker. This constant figure helps the family cope with the many difficulties facing it and provides psychological and other forms of support when necessary.
Anat Klein, a social worker in the hemato-oncology department at Schneider hospital, explains that children from many different backgrounds are treated in the department, and she tries to pair the child and his family with the best social worker for them. There are children from different cultures, for example, and who speak different languages, so the department has social workers who speak Russian, Amharic and Arabic.
The social worker helps the family in many different areas, one of the most important of which concerns coping financially. After a child has been diagnosed with cancer, one of his parents usually has to stop working, to be with him in the hospital and during treatments. There are likewise additional expenses for drugs, traveling, caregivers for the sick child's siblings, etc. The social worker helps the family obtain the required assistance - from both governmental institutions from which the family is eligible to receive assistance and from various associations.
The social worker also helps with the psychological care of the child and his family, in conjunction with psychologists and psychiatrists.
Other professionals involved in the treatment of the sick children include art therapists, who use drama, music and plastic art to help the children, especially the younger ones, work through their feelings and fears. Yaniv notes that there are some children for whom this is the only way to connect with them. The therapy for one 8-year-old girl used an imaginary game with dolls, which continued for several months, and helped the girl significantly improve her relationship with her mother. The strong bond that formed between them made it easier for them to be more open with one another and to talk about difficult subjects, including death.
Cancer and school
Children who have cancer are very often cut off from their regular surroundings and miss school for long periods. Their absence creates gaps in their studies, and they have difficulty catching up after they recover. When a child is hospitalized, it is very important to provide him with a framework in which he can function, and one way to do this is to maintain his regular studies as much as possible.
Yaniv explains that to this end, Schneider also has a teaching staff for children who are interested in learning. Yaniv relates that once there were some Bedouin children being treated in the department, who had never been exposed to computers, and while they were recovering they learned how to use a computer.
Another problem children face is the separation from their friends. The hospitalized child is not in steady contact with his friends while he is ill, and when he recovers and returns to school, he also has to cope with the ignorance and the fears connected with cancer. Yaniv explains that to combat this, the staff in his department make sure to contact the children's schools. When a child is diagnosed with cancer, a team consisting of a nurse, social worker and a teacher from the department goes to the child's school. The team meets with the child's teachers and with his class. There are also activities aimed at maintaining contact with the sick child, such as writing letters. This way, explains Yaniv, the child becomes a type of "class hero" and his return to school after his recovery is easier.
Telling the child
Yaniv says that one of the hardest day-to-day problems faced by the staff treating juvenile cancer patients is the need to tell the child difficult news. There is the question of whether the child has to be told everything in every case.
The child's faith in the staff treating him is essential to the treatment's success, says Yaniv. Hence the staff is careful never to lie to the child, and to inform him ahead of time of treatments and tests that he is about to undergo and how much pain or discomfort he can expect. The child is likewise told the truth about his illness and his chances for recovery. In all cases the child is given hope, because there is almost always a chance he will recover.
In cases in which the cancer has progressed and there is no longer any chance for recovery, Yaniv says it is harder to cope with giving the child this information. The family is always told everything, but the child himself is told only what the staff feel he can handle. Some children ask questions, and any child who asks is given a truthful answer.
The staff also encourages the child to ask questions, but do not force any information on him if he does not ask, in order not to harm his defense mechanisms. When a child does not ask any questions and does not exhibit any indications of a desire to speak about his illness or about death, he may actually want to talk about them, but cannot express himself.
One of the ways to check this is by raising the subject indirectly during a conversation with the child, for example by saying, "There are children in a situation similar to yours who often think about death." This gives the child an opening and he can continue the conversation, which some children do. Other children reject the subject, and it is not raised again.
The psychological side
When discussing child cancer patients, one often hears the sentence, "If I were in his place, I would be depressed, too." This is an attitude that should be combated, says Dr. Doron Gothelf, the psychiatrist of the pediatric oncology department at Schneider. Gothelf explains that depression is not an absolute part of the reality of children with cancer.
Up to 25 percent of child cancer patients suffer from depression or anxiety. Still, there is a tendency to put more emphasis on the medical treatment of cancer and to neglect the psychological aspect. If a child is suffering from depression or anxiety, it is very important for this problem to be diagnosed and treated, says Gothelf.
First, the depression or anxiety causes the child extra suffering. Second, studies have shown that a depressed child does not respond as well to the medical treatment.
Studies among adults have shown lower survival rates among cancer patients who suffer from depression. In addition, a child who suffers from depression, even as a response to his illness, is more likely to suffer from depression in the future, after he recovers.
Anxiety, the other psychological problem that sometimes affects child cancer patients, can manifest itself in a broader range of behaviors. Some children suffer from separation anxiety and are unwilling to be away from their parents for even a moment. Other children develop anxieties related to the treatments they are receiving, such as a fear of needles, or conditional nausea and vomiting that happen not only as a side effect of chemotherapy, but also when the child so much as hears that he is going to receive a treatment.
Other children develop general anxieties, which are expressed as constant worrying and questioning as to what is going to happen to them, how they will cope with their studies, how their friends will accept them back, etc. There are also some juvenile cancer patients who rebel, mainly against their parents, and become overly demanding. Gothelf explains that this is a problem, because there must be a balance between the parents' desire to give the child whatever he wants and every child's need to have limits set for him, so that his psychological development can progress normally.
It is not easy to diagnose the psychological problems of child cancer patients, explains Gothelf, because some of the symptoms of depression are similar to those connected with the disease or the side effects of treatments. A lack of appetite, for example, or weakness, could be attributed to any one of these causes. To identify the cause, doctors try to find a link between the symptom and physiological findings. If a child is weak, for example, only when he is suffering from anemia, which can be a side effect of chemotherapy - then the cause of the weakness is physiological.
There are other symptoms of depression that are not characteristic of cancer or the side effects of the therapies. It is also possible that the causes of a child's depression are not only psychological, but may be linked to the body's mechanisms for coping with the disease. Gothelf explains that cytokines, substances secreted by the body as part of the physiological process of combating a tumor, have been linked with the development of depression.
To increase the chances of recognizing psychological disturbances among child cancer patients, the routine admitting procedure for the pediatric oncology department includes a series of standard survey questionnaires for diagnosing depression and anxiety. If these are suspected, the child is examined by a psychiatrist. Children under the age of six have difficulty expressing themselves verbally, so suspicions of depression or anxiety can be clarified via art therapy. In addition, any suspicion of depression during a child's treatment in the department is raised during the staff meetings, which are attended by all the staff members involved with the child.
Various therapies are offered to children suffering from psychological disturbances, depending on the child and the disturbance. Children who are afraid of the treatments, for example, are often referred for biofeedback, which helps them to calm down, relax and distract their minds before an examination or treatment.
Gothelf notes that in some cases drug therapy can alleviate the symptoms. Gothelf was surprised to discover that despite the high rate of depression among child cancer patients, no research has yet been conducted on the efficacy and safety of drug therapy for these children. A primary study was conducted at Schneider, where 15 children were treated with an anti-depressant drug from the selective serotonin reuptake inhibitors (SSRI) group.
Gothelf notes that the therapy was found to be safe and the children's psychological state seemed to improve following the therapy. To confirm this, however, further studies must be conducted, which would include control groups that receive a placebo.
Gothelf relates that an American study showed that families with a child who is diagnosed with cancer can be divided into three groups. Most of the families have sufficient resources to cope with this crisis on their own and require only minor psychological support. A few families, in which there were serious problems prior to the diagnosis, including such things as substance abuse or unemployment, lack the necessary resources for coping. It is relatively easy to identify these families, and they are the ones that draw most of their energy from the hospital staff. Still, the chances of coping well with their child's illness are low, despite the help they receive.
The third group is the one in the middle - families that have other risk factors or problems, but which, with the necessary support, have good chances for coping well with the disease. Gothelf says that it is very important to identify these families in order to offer them the assistance they need.
Most of the psychological help given to families is provided by social workers, in conjunction with psychiatrists. Klein notes that the therapy is tailored to the needs and character of each family. A significant part of psychological treatment is done in the framework of support groups, in which the participants can work through their emotions and feelings toward the disease and the changes it has caused in their lives, and can share these feelings with others who are coping with similar problems.
Klein says there are many different support groups operating via the pediatric oncology department at Schneider - support groups for adolescent cancer patients, for parents and siblings of cancer patients, and even a support group for the grandparents of child cancer patients, which was formed following requests by the families. In many cases, the grandparents are very involved in supporting the immediate family.
Maintaining quality of life
In all the conversations with various staff members who treat juvenile cancer patients, one problem was raised over and over - the lack of resources; insufficient funds to hire enough staff, etc. A few associations have been formed to increase the resources for treating child cancer patients beyond what is provided by the Health Ministry.
One of these is Hayim, whose director, Orly Ariel, relates that it was founded about 20 years ago by parents of child cancer patients. Among other projects, Hayim participated in the establishment of oncology departments specifically for children.
Ariel says the children being treated for cancer used to be hospitalized in regular children's wards, where most of the other children usually had contagious diseases. Since the immune systems of cancer patients are depressed by the disease and the various treatments they receive, they are particularly vulnerable to infections. The first pediatric oncology department was established 19 years ago at a facility that at the time was part of Beilinson hospital, but which is now Schneider hospital.
Hayim also works toward the establishment of departments for pediatric bone marrow transplants - one of the main therapies used today for several forms of cancer. Ariel relates that the first such department was set up in 1986, completely financed by Hayim, and that the association continues to fund it.
Hayim recently began working toward the establishment of a pediatric oncology department for Israel's southern region. This project entailed a struggle with the Health Ministry, as well as a commitment by Hayim to provide 20 percent of the financing for the establishment and operation of the new department. The department is currently under construction at Soroka Hospital in Be'er Sheva and will open in about two years.
Hayim helps the families of child cancer patients to maintain their quality of life by sending caregivers to be with the other children while the parents are devoting most of their time to the sick child. Hayim's other services include helping child cancer patients with their schoolwork, transporting the children to the hospital, and providing financial assistance to some families for such things as the purchase of medications, prostheses and dental care.
To make the lives of hospitalized children as pleasant as possible, Hayim runs playrooms and school classes, summer camps and one-day outings and helps the children celebrate birthdays and festivals. One particularly important thing is the maintenance of the routine activities in the department, especially following difficult events such as the death of one of the children in the ward. The routine activities help the other children to cope. Hayim continues to help families even after a child is discharged, providing funding for rehabilitation and private tutors.
Since cancer completely changes the lives of the affected child and his family, maintaining his quality of life, in full cooperation with all the members of the staff who are treating him, is very important. Keeping the child as happy as possible both reduces the suffering of the child and his family and increases the chances for the success of the medical treatment. n