Paula K. Rauch M.D.
Director Cancer Center Parenting Program (PACT)
Chief, Child Psychiatry Consultation Service
Massachusetts General Hospital
Cancer is the second leading cause of death in the United States. Over 500,000 adults die of cancer annually (American Cancer Society: Cancer Facts and Figures. Atlanta, GA, American Cancer Society; 1997). The American Cancer Society and the National Cancer Institute do not keep records on the number of children and adolescents in homes with affected parents, but the numbers are clearly substantial and their needs largely ignored.
When patients are parents, quality end-of-life medical care should include both attention to the patient's role as a parent, and to the needs of the children at home. Too often, the children are the invisible sufferers in an otherwise comprehensive treatment plan. Clinical staffs working with adult cancer patients understandably focus on the needs of the patient. However, it is also important to attend to the needs of the children. The staff members have had limited education on how children can best cope with a seriously ill parent. Additionally, many lack the breadth of knowledge on how parents, both the ill and the well parent, or caretakers, can facilitate the coping process for children. A parent guidance program at the Massachusetts General Hospital Cancer Center, Parenting At a Challenging Time (PACT), offers a model for addressing this need. In the three years since initiating this program, a set of guiding principles has emerged, which may be helpful to clinicians in all disciplines.
The IVIGH Cancer Center Parenting Program (PACT) in Brief
At the Massachusetts General Hospital Cancer Center, there are approximately 5000 adult patients each year in treatment for a range of cancers. The goal of PACT is to help parents face normal challenges of parenting, while living in the context of a life-threatening illness. Patients are not billed for these services. If a clinician's valuable time were used to obtain mental health coverage and diagnosing each patient, then this would be contrary to PACT's mission. It is not parental psychopathology, but their circumstance, that necessitates parenting support. Consultation requests, on parent guidance, are invited from oncologists, social workers, chaplains, nursing staff, palliative care physicians, and family members. Common questions have included how to explain a cancer diagnosis to children, how to explain recurrence, how to cope with parenting issues associated with discord among parents and how to prepare children for hospital visits. Perhaps, the most frequent consultation requested is the nonspecific question, "Can you help this parent who is worried about his or her children?". Initially, I was a child psychiatrist doing consultations myself. I have now been joined by a wonderful child psychologist, Steve Durant. We meet with the parent or parents and other adult caretakers, as designated by the patient. It is not uncommon for a patient's spouse to meet alone with the consultant. Consultations are usually available within 24 hours of request. Telephone contacts are common, usually as a follow-up to consultative meetings. Patients are seen between one and twelve times. Dr. Durant and I attend support groups available for both patients and their spouses, a monthly PACT drop-in support group and disease-specific support groups, which meet throughout the year.
Parenting education sessions are run in multidisciplinary settings. The goal of these sessions is to increase clinicians' sensitivity to child-related issues. I have begun one-on-one teaching sessions with oncology fellows on their palliative care service rotation.
In the process of doing consultations and facilitating parents' groups, a set of questions has emerged. These questions are for clinicians to ask patients and to set guiding principles for supporting parents when challenging circumstances emerge. While these recommendations refer to parents with cancer, with minor adjustments, they can be beneficial to parents suffering from other life-altering diseases as they try to meet their children's needs.
Questions to Ask Patients:
"Do you have children at home?"
"Tell me about their personalities?"
"Have you told them about your I illness?"
"What did you say?"
"Is there a specific worry about any of your children?"
"To whom will you talk to if you have concerns?"
A Parent's Most Common Worry:
"What if my child asks if I will die?"
In responding to questions about dying, it is useful to offer an approach that encourages the parent to understand the child's underlying worries that led them to ask the question. The parent needs a better understanding of the question. They need to know what their child is thinking about so that they can address their child's specific concerns. Offering parents concrete words to use is also very helpful. For example, if the parent's death is not imminent, a parent could say, "My cancer can kill people, but with the doctors' help, I am taking the best care of myself so that I can live as long as possible." If death is within weeks, the parent could respond with, "Even with trying my hardest and getting the best care, my cancer is getting worse. Still, I plan to live every day." Typically parents dread questions about dying, and they are relieved by how well children respond to hearing that the parent may or will die. Children can be expected to cry or ask questions, but they usually resume their age-appropriate interests and activities.
Guiding Principles For Helping Children with an Ill Parent
- Express interest about the child's daily activities.
- Maintain daily routines as much as possible.
- Use key support people to help the child and the family.
- Carve out protected family time, such as putting on the answering machine during dinner or having a special time in the evening.
- Give medical updates, because overhearing bad news is the worst way to hear it.
- Give factual, age-appropriate responses to questions about the illness. This will avoid confusion, worry in young children, and leave older children feeling confident that they are included. Ask children to share what they hear about the illness. "Don't worry alone."
- Welcome all questions warmly. Ask the child to elaborate on the question being asked.
- Try to tease out the "real" question being asked.
- Answers do not need to be immediate. Take time to think out an answer.
- Do not force a reluctant child to share more than feels bearable.
- Facilitate all forms of communication, such as phone calls, notes, and drawings.
- Prepare children for visits to the hospital or funeral home. Describe what the child will see before entering the room and what emotions they may encounter.
- Let the child determine the length of the visit.
- Bring a familiar adult who can leave when the child is ready to leave.
The majority of parents and children will not seek professional support during a parent's illness. Many children will receive some support from school-based counselors, particularly when the outcome of the parent's illness is expected to be death. Many parents will receive support from a social worker at the treatment center. Any child or family that requests a referral for counseling support should be assisted in pursuing this process. Children at highest risk are those who have had pre-illness coping difficulties. These coping difficulties include children with poor school function, difficulty making and keeping friends, minimal positive engagement in after-school activities, and markedly conflicted, angry or resentful relationships with either parent. These pre-illness issues may interfere with a child's ability to seek solace in friends and friends' parents and to experience school or after-school activities as a haven from stressors and the turmoil of a parent's illness. Children in divorced families with parental discord, like children with conflicted relationships with a parent, are at risk. They often feel blocked in sharing the experience of having a sick parent with the other parent and feel that they will not be understood.
Many children who might benefit from counseling will refuse psychiatric support recommended by the parent. Non-psychiatric adult supports at school, church, in the extended family, and among parents of their friends may provide support and may be the necessary vehicle for further referral. Some children cannot be allowed to refuse psychiatric assessment. A child psychiatrist must assess a child, who exhibits symptoms of depression, as observed by the parent or reported by other support people. Children who engage in reckless behavior, such as unsafe driving, staying out late in unknown locations, or substance abuse, should be professionally assessed and treated.
Clinicians who care for adults with cancer should ask about every patient's family. Ideally, cancer centers should have child trained mental health clinicians available to assist patients who have children. The training that child and adolescent psychiatrists receive makes them well prepared to work with these children and their families. If such programs are to flourish, then child psychiatrists must be their advocates. Funding access to a therapist, who understands development and coping in the challenging setting of serious medical illness, requires commitment from the institution. This commitment must be fostered by demonstrating the use of these guiding principles with clinicians. These guidelines can be taught to a wide range of clinicians. As child and adolescent psychiatrists, it is incumbent upon us to begin this as a grassroots effort, in order to prove that these principles are not only teachable but also highly effective. These principles enable us to help children cope with parental illness. As clinicians become more comfortable with parenting issues and recommendations, patients are more likely to be invited to share a range of concerns about their children. I have found initiating a parenting program to be a new arena for child psychiatry practice, which offers an opportunity to do enormously gratifying work.