Your patients' children are not your responsibility. Yet concern for those innocent bystanders may be an essential component of compassionate care. Why? Because your help with the parenting issues may decrease the stress at home, and thus help your patients. And because encouraging your patients to hold on to their parenting role may help them find the courage, strength, and hopefulness needed to get through treatment and recovery.
Don't worry: Addressing the parenting issues doesn't have to be an added burden. Just one simple question from you or your staff may be all it takes to prompt your patients to make changes at home that help their children in dramatic ways. Or you can simply provide a handout that lists local and national resources where patients can obtain guidance and support regarding the parenting issues. For my next column, I'll provide a new Patient Handout with insights and tips on helping the children.
That one simple question I mentioned above is “How are you helping your children?” Unlike asking, “How are the kids?” (a question easily answered—“Fine”—without thinking), inquiring about what your patients are doing to help their children sends two messages: (1) Their illness is affecting their children and (2) they have a duty to help their children.
The problem is that obstacles often keep intelligent, responsible, loving parents from sharing even the diagnosis with their children, let alone devoting time and energy to guiding and supporting them. For one, instinct pushes patients to shield their children from the crisis, leading many to try to keep the diagnosis a secret.
For another, patients often underestimate the impact of their illness on their children. Recently my oldest child, who was not quite six years old when I was diagnosed, and I were talking about first memories in life. She shocked me by revealing that hers was of me coming home from the hospital, limping and looking stunned—a vivid memory that has stayed with her. I, too, remember that moment. It's a foggy recollection of feeling like a stranger in my own house as I headed straight for my bedroom to lie down, a memory that doesn't include my kids.
Some parents, aware of their children's distress but feeling overwhelmed, decide their children's issues have to wait.
Take advantage of how patients look to you as the expert in survivorship. Acknowledge the powerful instinct to protect the children and the desire to preserve their innocence. Then encourage your patients to suppress that instinct to shield the children and, instead, to talk openly with their children.
Explain that all children are observant, taking in what's happening in their world, and interpreting what's happening based on what they know. Highlight the dangers of their children drawing inaccurate conclusions and developing unhealthy ways of coping—problems your patients can minimize by guiding and supporting their children.
Be definitive: “Whatever you say, tell the truth.” Then warn your patients to steel themselves for children's normal, healthy emotional responses to upsetting news. Reassure them that they have access to resources for learning quickly about helping children through difficult emotions, such as by providing safe places for their children to express whatever they are feeling.
Acknowledge how overwhelming the twin challenges of kids and cancer may feel. A tip for making the parenting issues more manageable is to focus on meeting children's three basic needs:
* Ongoing satisfaction of physical and emotional needs;
* An understanding of what's going on in their world, on their level; and
* Reassurances they will be cared for no matter what happens with their parent.
Emphasize that patients don't necessarily need to fulfill these responsibilities themselves. And sometimes they shouldn't. You may need to be the heavy, reminding patients that getting good medical care is the best way to help their children and must remain the top priority—even if, at times, it means delegating all the parenting responsibilities. Reassure such patients that “Delegating is not abrogating your duties. In this case, delegating is how you fulfill them responsibly and lovingly.”
For me, after vowing to include my children and always tell them the truth, my greatest challenge was figuring out exactly how much to say. These three tips helped:
* “Tell your children enough, not everything.”
* “Tell them what they need to know to deal with the changes in their world.”
* “Answer their questions.”
If patients seem unable to tend to their children's basic needs or open the lines of communication, refer patients to professional counselors such as hospital social workers, child life specialists, or clergy. Again: Delegating is not abrogating responsibility.
If time permits, quickly mention, “Two facts your children need to know: Cancer is not contagious, and your illness is not their fault.” Suggest that patients liken cancer to other non-infectious conditions (such as a friend's broken leg) and to familiar phenomena beyond control (such as rain).
You have innumerable windows of opportunity to help your patients. Throughout your patients' treatment and recovery, you can ask “How are you helping the children?” and provide the same tidbits of advice. Repetition reinforces that teaching and supporting children are ongoing processes throughout the parent's survivorship. Reassure patients that this repetition, while tiring, is healing for the whole family.
Childhood experiences shape the adults those children become. Which is why, if nothing else, I urge you to push two ideas: “Please, include your children, and tell the truth.” Because the greatest gift we can give children is not protection from the world, but the confidence and tools to cope and grow with all that life has to offer.