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Parents With Cancer: Who’s Looking After the Children?

From the Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston, MA.

Address reprint requests to Paula K. Rauch, MD, Massachusetts General Hospital, WACC 725, 15 Parkman St, Boston, MA 02114-2696; email: prauch{at}partners.org

HERE’S THE CASE

MS A IS A 40-YEAR-OLD married mother of three with metastatic breast cancer, who was referred to the Cancer Center Parenting Program by her medical oncologist. At the time of referral, Ms A had been given the news that she had new brain metastases in addition to the bone metastases that were present at the time of diagnosis 3 years ago. Ms A and her husband were seen by the consulting child psychiatrist in the outpatient psychiatry clinic after a scheduled radiation treatment. Mr and Ms A shared their concern that her advancing disease was impacting the functioning of their children, aged 4, 9, and 14 years, and they wondered how to talk with the children about their mother’s disease progression and poor prognosis. They were most worried about their 14-year-old son, who would not talk about his mother’s illness and was experiencing new difficulties in school. Their 9-year-old son was asking many questions about Ms A’s daily treatments and even expressed the wish to see her X-rays and talk to her oncologist himself. He had written a story in school about his mother’s cancer in which he shared the worry that he would be the only boy in his class without a mom. Mr and Ms A had no expressed concerns about their 4-year-old daughter, who they imagined was unaware of her mother’s illness. She was described as an affectionate little girl, who had always joined her parents in their bed during the night and who now insisted on falling asleep with them as well.

The National Cancer Institute estimates that 24% of adults with cancer are parenting children younger than 18 years.¹ Despite the number of families affected, there is little information about their needs and outcomes.

Recent experience at the Massachusetts General Hospital with a pilot program for parents with cancer confirms how concerned parents are about the effect of their illness on their children and how grateful they are for guidance. The Massachusetts General Hospital Cancer Center currently supports the clinical time of a senior child psychiatrist, a child psychologist, and a junior child psychiatrist participating in a yearlong fellowship. Patients are not billed for any of the parenting services provided by the mental health staff. Any member of the multidisciplinary oncology team may initiate individual family consultations. From 3 years of providing consultations and parent groups, the program has developed a set of guiding principles for helping parents during these challenging times (Table 1).

Inviting comments about typical developmental issues irrespective of the parent’s illness underscores how much of a child’s behavior may be simply age-appropriate. The goal is to model a balance that appreciates the resilience of children and yet does not minimize the real impact of the illness. Exploration of prior family challenges allows the clinician to support the parents in their longstanding expertise in knowing and parenting their own children.

Step 2: Maximizing the Support System Children do best with a regular schedule and should be encouraged and supported in continuing "life as usual." Parents will benefit from direction in how to use family, friends, and community support to achieve this goal. For very young children this means maintaining a small number of well-known caretakers, a daily routine of regular sleeping and eating times, and a familiar setting. For older children it also means maintaining school, peers, and other activities.

Keeping the caretakers and the school updated on the medical situation allows the child’s support network to be accommodating. A key adult such as the mother of each child’s best friend may be asked to keep the parents informed about important issues such as school assignments and after-school events. When family life is disrupted by parental illness, stability in other arenas of the child’s life is especially important.

Relationships with nonparental adults should be encouraged. Statements such as "It makes me feel good to hear that you and [the best friend’s] mom figured that out together" give the message that the child’s other relationships with adults are appreciated rather than seen as disloyal to the parent.

Two parents who work well together and relate well to their children make it easiest to accommodate to the illness and for the ill parent to envision a secure future for the children. If there is preexisting parental discord or divorce, creating a supportive context for the children is more difficult. Sometimes, parents may rely on respected extended family members to bridge the parental rift, but often professionals are needed. It is sometimes necessary to involve the courts, or request a guardian ad litem, to protect the long-term interests of the children, such as in a situation in which the patient’s spouse/partner has a history of being abusive to the children.

Step 3: Talking About the Illness Facilitating honest communication and age-appropriate understanding is a key task in helping children cope with a parent’s serious illness. The simple act of extra time spent holding and talking with children is valuable. Open communication provides reassurance that the family will get through the illness regardless of outcome and that the family will weather the uncertainty together.

Often clinicians and parents do not have a developmental perspective on how children comprehend medical illness. Preschoolers weave logic and fantasy together to arrive at an idiosyncratic understanding of the events in the world. They are egocentric and thus cast themselves as the cause of the events affecting them. It is therefore important to remind children between the ages of 3 and 7 years that the parent’s illness is not a result of anything the child thought or did. For example, a parent might say, "Some kids worry that they caused the cancer somehow, but that is never true." It is often helpful to invite preschoolers to share their ideas about what caused the cancer, so that misconceptions can be dispelled. Young children who feel responsible for the parent’s illness may exhibit their distress with anxious, inhibited behavior or outbursts of angry, oppositional behavior. School-age children (7 to 12 years old) may feel guilty about things they have said or done to the parent, but with brief education about cancer, they can comprehend and retain the understanding that their behavior did not cause the cancer. Children in this age group need to be educated that the cancer is not contagious and that not all cancers are caused by cigarette smoking. Unlike preschoolers, school-age children and adolescents understand the permanence of death; thus the potential of death may become part of the discussion.

Parents can facilitate communication by welcoming questions and taking the time to explore the "real" question that the child is trying to articulate. Questions to the child such as "What got you wondering about that?" or "What part did you want to know about?" will help parents understand the child’s underlying question or concern.

Questions can be warmly received without having an immediate answer. Remembering this helps the adult to relax and creates an atmosphere that is conducive to a child’s asking questions. Statements such as "That is an important question. Let me think about it," or "I’d like to talk about it with Daddy or the doctor," permit time for consideration of an appropriate answer.

Misinformation from others is an inevitable part of the child’s experience of having a seriously ill parent. Well-intentioned people will say things to and around the child that are not accurate and not helpful. Often stories about other people’s cancer experiences are irrelevant to the child’s experience and can foster frightening misconceptions. Children need to know that they should share these stories with their parents in order to correct misinformation and brainstorm about ways to feel supported away from home.

Step 4: Addressing the Common Questions "What do we call the illness?" Many parents are reluctant to use the word, "cancer," preferring to use euphemisms such as the "bad cells," "lump," or "boo-boo." The word cancer sounds too scary to them. However, euphemisms lead to confusion and anxiety. They can convey the frightening notion that any lump might denote a grave illness. The recommendation to use the "real" or adult words such as "breast cancer" or "leukemia" inevitably leads to parents talking about their own and their child’s previous experiences with cancer.

Parents should tell their children that there are different types of cancers, and some people are sicker than others. The child should be encouraged to share with the parent what he or she hears about the parent’s illness, or about cancer in general, from other adults and children. This encouragement sends the caring message, "Do not worry alone." Worries based on misconceptions can be dispelled, and other worries can be lessened just by knowing that they are shared. Strategies some children find helpful in managing worries include writing in a journal, listening to music, or engaging in a physical activity.

"How much should we share with the children?" Often parents want to protect their children from bad news or anxiety-provoking treatment options. However, one should assume that whatever the adults are discussing will be heard by the children. Unfortunately, when children overhear information, the likelihood of misunderstanding is high. Furthermore, this approach to communication delivers the hurtful message that either the child’s experience is so unimportant that no one has bothered to include the child, or the news is so terrible that it cannot be spoken about to the child. In either case, the child is left alone with the distressing information.

"Should I make my child talk about the illness?" Once parents have conveyed to the child that they are available and interested in the child’s thoughts, it is usually best to let the child initiate discussions. Parents might consider inviting a child who rarely talks about the parent’s illness to do so periodically with a comment such as, "You know that if you want to talk about [the illness] I would be interested in what it is like for you." It is rarely helpful, or even possible, to force a child to talk when the child has said he or she does not want to do so. Parental worry about a child’s not talking often emanates from a sense that if the child does not talk enough during the illness, he or she will have more difficulty later in life. While having the capacity to discuss the illness and garner support is a strength, imposing unwelcome discussions on a child is likely to feel, to the child, intrusive and unsupportive. Furthermore, there is no evidence that such forced discussion will have a protective effect in the future.

Many children cope by keeping busy with school, activities, and friends and will want to talk about the parental illness as little as possible. For these children, sharing medical updates is important, but parents must adjust their expectations to accommodate a minimal response from the child. Often the well parent expresses most of the concern about the child who chooses not to talk. It is helpful to remember that the experience of being the child of an ill parent is fundamentally different from being the patient’s spouse.

"Are you going to die?" This is the question most commonly feared by parents. Parents often worry that the answer to this question will convey hopelessness about the future that prevents the child from participating actively in current life. Many parents will choose to acknowledge that the cancer may kill them but that they intend to take the best possible care of themselves and, when true, that they are also pursuing the best available treatments in the hope that they will live a long time. Some parents say they do not know how much time they have, but they intend to do as much living as possible in the time they have and hope the child will continue to be as busy and active as usual. Helpful strategies include acknowledging how hard uncertainty is and asking the child whether he or she has specific worries about what would happen if the parent died. A parent might say, "Uncertainty means hoping for the best and having a backup plan for the worst. Do you have worries or questions about what would happen to you if I died?" Many children ask whom they would live with if the well parent also died and may seek reassurances about the state of the well parent’s health.

Step 5: Preparing for a Hospital Visit If the child has expressed an interest in visiting the hospital, and it is logistically possible, it is best to prepare the child and facilitate the visit. If a parent is undergoing a surgical procedure, it may be wise to wait long enough for the parent to be medically stable and at his or her best level of alertness for the visit. For most children, the reality of the hospital is less scary than their fantasy of the unknown. The one exception, perhaps, is the agitated, delirious parent who would not recognize his or her young child. It is not possible for a young child to understand the parent’s altered mental status, and this is likely to be frightening. In this setting, it may be better to postpone the visit until the parent has improved or is sedated and, in the meantime, have the child send a picture or message to the ill parent through another adult.

For the child who does not want to visit the parent, the reason for staying away needs to be explored. If there are particular worries that can be alleviated, such as a fear of seeing the parent receive an injection or a fear of blood, other caregivers may be able to help the child feel ready for a visit. If the expectation is that the parent will return home after the hospitalization, and the child clearly does not want to visit, this wish should be respected and other forms of child-to-parent communication facilitated.

Preparing a child for a hospital visit includes describing what the child will see: the parent’s appearance, intravenous lines, oxygen, possible roommates, nurses, and doctors. A familiar adult who will be satisfied to stay as long, or as short, a time as suits the child should accompany each child. The well parent may not want to prematurely end a visit if the child becomes uncomfortable. The other adult can take the child to the gift shop or outside for a walk while the parent continues to visit.

When the visit ends, the child should be asked whether anything was surprising about seeing the parent or about the hospital setting. Adults may ask what parts were hard or fun about the visit and inquire about questions that the child may have.

For the child who chooses not to visit, who logistically cannot visit, or who arrives at the hospital and cannot bear to stay long enough to visit with the ill parent, caregivers may offer other forms of communication. Telephone conversations, drawings, letters, emails, tapes, and even videos are good ways to communicate. Different children in the same family may elect different forms of communication, and each needs to be supported in the mode that he or she can best bear. For example, the well parent can report back to a child that his drawing is next to the ill parent’s bed and "Daddy smiles every time he sees it."

Step 6: Saying Goodbye What a parent wants the child to know and remember must be said explicitly and repeatedly until the parent is satisfied that the child has absorbed it. If one’s children know they are loved, and why they are loved, there is usually no need to say the word "goodbye."

When the child has the opportunity to say a last "I love you" in person, it helps make the parent’s death more real. When it is not possible to say goodbye to a parent before death, the goodbye can occur at the funeral or privately at the funeral home. At the bedside, the child should be invited to say aloud or think their final thoughts to the parent. It may be comforting to share that we do not know what people hear in coma, but we believe that they may feel the presence of family members. A clinician may facilitate a discussion between the family members about the dying parent at the bedside. Remembering incidents that capture the spirit of the dying parent’s parenting style will comfort some children and adult relatives. Surprisingly, the stories that unfold are often humorous or bittersweet. Sometimes children fear that they will forget the dying parent. The surviving adult relatives can reassure the child that they will be available in the future to remind them of how the dying parent would have responded.

The hours or days surrounding the goodbye are an opportunity to give the surviving parent and children a road map for the grief process ahead. Clinicians might say that it takes a long time for the empty spot to feel better, but after a time many children find that the dead parent is a presence for them in hard times and that the empty spot fills in. Most grieving children who are losing parents from cancer are all too familiar with bearing sadness during the prolonged course of the illness. Reminding the surviving parent and the children of the strength and coping skills that have carried them through to the current loss may convey a confidence in their ability to go forward.

The clinician can enlist the surviving parent in articulating the wish that the children remain engaged in the world of the living. One way to help the surviving parent to do this is by asking whether the deceased parent would want the children to be happy and active. It is important to help the children feel that they are not being disloyal to the dead parent when they have moments in which they forget their grief. Grieving parents can assist the children by making a point of asking about the specifics of schoolwork, relationships with friends, and sports activities. Attention to these details delivers the message that the surviving parent values normality and that the child is supported in reinvesting in life.

REFERRAL GUIDELINES
The majority of parents and children will neither seek nor need psychotherapy 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. Parents may receive support from a social worker at the treatment center. Any child or family that requests referral for counseling support should be assisted through the often confusing process involving insurance regulations for mental health care. Some children and parents are at greater risk during a prolonged illness and potential death, and psychological assessment and treatment should be recommended. A child who has had significant preillness coping difficulties, or any parent or child who exhibits signs of major depression, should be referred for mental health follow-up.

In conclusion, clinicians who care for adults with cancer should ask about every patient’s family. For the parent with cancer, concerns about his or her children are essentially universal. Ideally, cancer centers should have trained mental health clinicians available to assist these patients in performing the critical role of parenting. Funding access to expert clinicians who understand development and coping in the challenging setting of cancer treatment requires commitment from the institution to overcome the barriers that prevent such a service from being fully reimbursable. Furthermore, there are guiding principles that are useful to assist parents in helping their children cope with a parental illness. These principles can and should be taught to a wide range of clinicians. As clinicians become more comfortable with parenting issues and recommendations, patients are more likely to share their concerns about their children. Sharing these concerns builds an alliance with health care providers and offers an opportunity to help thousands of children whose needs might otherwise be overlooked.

EDITOR’S NOTE
The concluding paragraph nicely notes the values of having clinicians discuss child-related issues in appropriate circumstances. I might suggest that a great way to facilitate such an exchange is to provide such patients and families a copy of this article. That’s what I plan to do.

—Charles L. Loprinzi, MD

ACKNOWLEDGMENTS

We thank Stephen Durant, EdD; J. Andrew Billings, MD; Bruce A. Chabner, MD; and Kathleen E. Walsh, MPH.

REFERENCE

1. National Cancer Institute : National Health Interview Survey. Bethesda MD, National Cancer Institute, Division of Cancer Control and Population Sciences, Office of Cancer Survivorship, 1992

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This Article Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Rauch, P. K. Articles by Cassem, N. H. Search for Related Content PubMed PubMed Citation Articles by Rauch, P. K. Articles by Cassem, N. H. Social Bookmarking                            What's this?