When a Support System Falls Apart

This case study illustrates some of the off-treatment issues your patients may face when their coping support system is inadequate. Some of the psychological effects cancer patients deal with do not manifest until years after treatment is completed. It is important for patients to establish a foundation for successful survival while still in treatment. It is equally important for patients/survivors to understand their disease and its ramifications, both medical and psychosocial.

Patients/survivors need to feel they have some control over their situation, and while the family is generally the vehicle to helpachieve this, they are not always the best resource. It is central for the clinical care team to recognize these situations and help put their patients in the best situation to be successful in their life after cancer, whether that involves frank discussions with the family and/or the patient or helping them find resources that will help them cope. Do not be afraid to step in and offer advice. More often than not patients/survivors and their families are ill equipped to deal with the numerous obstacles of a cancer diagnosis.

An Overprotective Mother

In 1994, at age 6, Billy was diagnosed with Wilms' tumor. He completed a standard protocol early in 1997. He had just started first grade in a private school when diagnosed. His teachers and classmates were very supportive. Throughout treatment, Billy remained upbeat and did not experience any issues that required counseling. After 8th grade, he moved to a new neighborhood and started 9th grade at a public school.

Since his father's profession required a lot of travel, he was absent during much of Billy's transition to the new school. Thus, his mother became his sole support. She had never let Billy participate in sports or go on excursions with his classmates at the private school, but he had such an excellent support system, he was able to cope with her actions. After the move, however, Billy gradually lost his former support system, and his father continued to be away on business trips. His mother had been anxiety prone prior to his diagnosis and was seeing a psychologist. However, after they moved, she stopped the therapy sessions.

Billy began to experience anxiety that his tumor would return. He felt increasingly isolated at the new school; he began skipping classes, his grades dropped, and he became aggressive and started to bully his mother when his father was away. He soon fell in with a gang in his new neighborhood and was arrested with them for trespassing on school property, joyriding, and painting graffiti on the gym walls. He received probation, which required him to undergo counseling. Billy was on the "slippery slope."

After Billy's latest fiasco, his father contacted the social worker they had used when Billy was in treatment; she recommended a local psychologist. This was a turning point for Billy. The new psychologist had also survived cancer and had experienced some similar issues post-diagnosis upon his return to school. As a result, the psychologist was empathetic with Billy's plight and had practical experience to share with him.

The psychologist's assessment led to the conclusion that Billy would best be served by a period of residential treatment, including pharmacotherapy. The goal was to stabilize Billy and gradually reintroduce him to his family.

Billy's family applied for predetermination of coverage for the residential treatment beyond the 3 weeks covered by their health care plan. The plan denied authorization saying Billy could be cared for as an outpatient. Their rationale was that Billy was not a danger to himself or others, had no present medical illness, his aggressive behavior was marginal, and he was not on medication.

Billy's father was a former member of Candlelighters and was familiar with the Childhood Cancer Ombudsman Program (CCOP). He asked for assistance in preparing an emergency-level appeal of the denial of residential care past 3 weeks. CCOP assembled a panel of psychology and psychiatry experts and a pediatric hematologist/oncologist who was involved in research into the late effects of cancer treatment.

As the panel delved into Billy's history, they discovered that he experienced increasing episodes of screaming and belligerence. During these episodes, his mother locked herself in her room. After two of these incidents, Billy packed a bag and left, saying he would live somewhere else; one of these times he also indicated that he was thinking of "putting an end to it all." This behavior usually took place when his father was traveling. Lately, however, he had begun to act out even when his father was at home. Billy started smoking marijuana and using alcohol. The family kept this hidden from his psychologist. During his inpatient treatment, Billy "escaped" briefly, during which time he smoked marijuana and drank alcohol.

Appeal Strategy

The appeal focused on Billy's cancer phobia. He was terrified that his cancer would return and he would die. This enabled his risk-taking behavior. It also explained his antipathy toward his mother and later his father. When he was going through cancer treatment, she was the one who saw him through the procedures and was always there for him.

As mentioned earlier, she was overly protective, and it became apparent that he resented her for her actions. He felt that her protective behavior deprived him of an opportunity to live his own life, what was left of it. He felt that his father had treated him like an adult and valued his ability to stand on his own.

Once the panel had established Billy's cancer phobia, they focused on the parts of Billy's medical records that had been disregarded or downplayed in the health plan's original decision.

• Regarding the "absence of medical illness," the reviewer consensus relied on the Americans With Disabilities Act definition that a "history of cancer" can be a continuing and potential source of disability. In Billy's case, the phobia resulting from his cancer treatment caused his threatening and destructive behavior. Based on the foregoing, Billy's situation should be considered a medical illness.

• As to his not being on medication, the health care plan ignored the recommendation of his psychologist that a medication plan be considered and implemented. Indeed records reflected a treatment plan including pharmacologic intervention as a bridge to lasting control of his phobia.

• As to his "marginal" aggressive behavior, the health plan apparently did not consider his marijuana and alcohol use at home or during his "escape" from the inpatient facility.

• As to Billy not being a danger to himself or others, the panel strongly indicated that it did not believe that the health plan would require an actual suicide attempt or self-injury to justify additional inpatient care, particularly when suicide and self-injury could easily be avoided by the proper management of Billy's condition. This point seemed to resonate with the health plan. Billy's psychologist attended the appeal by phone to provide his insight into Billy's current condition and the length of inpatient time he would require to prepare for a successful outpatient counseling program.

Resolution

The "cancer phobia" presentation was successful, and the health plan approved an additional 3 weeks of inpatient mental hospital stay. Working with his psychologist, a program was put together that confronted Billy's phobia, and he was transitioned to a partial hospitalization program. Billy met with other Wilms' tumor survivors at a hospital support group. These survivors were proof positive that he could lead a happy and healthy life. He expressed anger that his original treatment team had not properly explained his excellent chance of survival. He wrote a letter and later talked with the lone team member remaining at the hospital where he had been treated.

At this point, his psychologist discontinued the drug intervention and the family agreed to take part in family counseling with the "new" Billy. He continued counseling as a preventive measure once a week initially and now once a month. His mother also agreed to go back into counseling. His father changed positions in order to cut down on his travel and again became involved with Candlelighters. He also began taking regular trips with Billy, including camping, fishing, and other "bonding" activities. Their most recent "road" trip was to look at colleges. Billy is now enrolled at an elite college in the Midwest majoring in mathematics and minoring in biology.

Lessons Learned

• Take all possible steps to ensure that the patient knows everything about his or her diagnosis, treatment, and future.

• In pediatric cancer cases in particular, watch out for signs of overprotectiveness on the part of any family member. This is a "family" disease, and if one member's position is not in the best interests of your patient's mental health, talk to the other family members and see if a solution can be found.

• xFamilies may be reluctant to get into counseling, seeing this as a stigma. If you sense this, explain that this is a common step in the healing process and that cancer recovery is about much more than just treatment of the disease.

• If you have a parent, cancer survivor, or other support group at the treatment facility or in the community, bring it to the family's attention—sometimes just having someone else to talk to makes all the difference.