When Elizabeth Edwards died, at age 61, following a four-year ordeal with cancer, she left behind three young children. Steve Jobs also succumbed, but only after a similarly long siege. For many parents that raises an important and challenging issue: what should we say to children when a loved one has been diagnosed with a "terminal" illness?
And, as we point out in our book Saying Goodbye: A Guide to Coping with a Loved One's Terminal Illness, more and more families can expect to experience prolonged grief as medical advances allow people diagnosed with major illness to live months and years beyond what was once the norm. In other words, "terminal" no longer means what it once meant: that death was either imminent or not far off.
Adults often hesitate to bring up the subject of a terminal diagnosis with children, for fear that such a discussion will frighten or even traumatize them. The truth be known, children are aware of both death and serious illness whether or not they have experienced it in their immediate family. They know about it from fairy tales, television shows (including nature shows), the death of a pet, and so on. And while their parents may not realize it, children are aware of many things, including terminal illness, through their classrooms. My own 9-year-old daughter, for example, shocked me when I told her that an older cousin had been diagnosed with leukemia. She replied, "I know about Leukemia, Daddy. A girl in my class has it."
The ways in which children respond to a terminal diagnosis is shaped in large part by their social environment. Most prominent in this regard are parents, teachers, and family. Children are very sensitive to the emotional moods and nonverbal communications of adults around them, and they sense when a parent (or other relative, or a teacher) is upset even if these adults think that they are unaware of what may be happening. Given that reality, it makes sense to us to open communication rather than avoiding it.
The New Grief
Obviously the level and type of discussion you have with a child about a terminal diagnosis will depend in part on the child's developmental stage and the nature of the specific diagnosis. Of course some "terminal" patients die quickly. Increasingly, however, we can expect children to be confronted with a parent, friend, or other loved one who battles cancer for years, who may experience a prolonged remission, and who may or may not experience a recurrence. In this scenario, which we call the new grief, children and their families must learn to live with things like the pernicious side effects of treatment, as well as a degree of uncertainty about the loved one's long-term survivability.
Our research shows that it is helpful for families to talk about death and dying as a normal part of the life process, beginning when children are young, in order to help them clarify their concepts of the life/death process. This may be even more important today, when children can expect to have at least one close relative or friend battle a terminal illness for months or even years. In extensive interviews, adults who as children had a parent who was diagnosed with a terminal illness, uniformly told us that they believed they could have handled more information than they were given, and that the lack of information created more, not less anxiety for them.
Tell Them What They Need to Know
Explanations of a terminal diagnosis and what it means do need to change depending on the child's developmental stage. Regardless of age, however, allowing for a child's questions, and encouraging the child to express feelings, can go a long way toward providing reassurance and establishing a supportive relationship. It's also okay to answer a question with "I don't know" if that is the truth.
For younger children in particular it is important to explain how treatment may affect the patient, along with how their own routines may change. For example, it is important to explain that chemotherapy may cause temporary fatigue or nausea, as well as loss of hair. One mother told her young son and daughter the following: "Daddy will be taking me for treatment once a week, and afterward I will be sleepy and need to rest, but the next day I will feel better. Aunt Susan will come over to help out on those nights, and Daddy will be getting you your favorite take-out food on his way home from work. Also, I will lose my hair, but that will grow back after I am better, and in the meantime I will have a wig to wear."
Children may need particular reassurance if the potential loss is not of an elderly person (whom they may realize is "naturally" closer to death) but a parent, a cousin, or a classmate. Of course you can't promise a child that you (or they) will never die, but you can say that most people today do live a long life, that if they do get sick there are many more ways to help them, and that you are taking care of yourself and others in the family to help achieve that.
Teenagers may be capable of understanding more about the nature of the diagnosis and the treatment plan. That is certainly what our interviewees told us. However, teens also need to know how the diagnosis and ongoing treatment may affect their own lives. Will the family, for example, experience financial difficulties? Will teens have to give up one or more activities for financial reasons or because of a lack of transportation? Are there other relatives or friends who could pick up some of the slack, for instance by providing transportation? Will teens need to pick up added household responsibilities? Initiating such discussions in a frank way can actually reduce, not increase, stress for all concerned.
Hospital Visits
These can be tricky, but necessary -- for example after a parent undergoes surgery to remove the vestiges of a malignant tumor. We recommend that children and teens be prepared in advance for hospital visits. They should be told exactly what they will see and what will happen, and be able to ask questions. Again, knowing that their father (or mother) will be in a bed, possibly connected to monitoring equipment, and might also be sleepy, will help to avoid unpleasant surprises.
For more information visit www.newgrief.com or read Saying Goodbye: A Guide to Coping with a Loved One's Terminal Illness.