By David Browning

How can healthcare professionals be most helpful when they encounter families in which a child is terminally ill?

The modernist approach to medicine places practitioners, especially physicians, firmly in the position of expert. This approach may be quite useful and necessary from the standpoint of making available specialized professional expertise. But it can be counterproductive when the patients and families seek to engage on a human-to-human level. This human-to-human form of contact is best facilitated by the stance of  learner,  in which the practitioner gets to know the children and families by honoring their expertise in telling the stories of their own lives.

As one mother I interviewed advised doctors:  Listen. Just listen and just dig deeply what they’re saying. . .That’s the kind of doctor to be. Not just a doctor that understands big words, doctor talk, whatever. . . I’m the one here with my child.. . . You got to listen to what I’m saying about my child.

Effective communication takes place when practitioners move fluidly between their position as expert and their position as curious and respectful fellow human being. Such relationships must be shaped by mutuality and reciprocity.

The concepts of  breaking bad news  and “delivering bad news” are examples of a lack of mutuality. Mail is delivered. Pizza is delivered. A frightening diagnosis or prognosis should never be “delivered.” It should be broached in the context of a relationship of mutuality and reciprocity.

Such communication best occurs in an ongoing relationship with a practitioner over time, but the principles of human-to-human relating apply also to a single encounter. A grandmother I interviewed told me:  When we were in the waiting room, the surgeon, he came out and he explained to us how serious it was. He even told us how long she might live. . . . To me, he was just like part of us at that moment. And I really appreciate him for that. Because that was the beginning of it and that would have been the most important part right there . . . the way he handled it, the way he took care of it. . . He even got a little room off to the side for us to go in by ourself for a minute. That particular surgeon, I’ll never, never forget him. I can just picture him, the way he presented himself, the way he expressed himself, the body movements, the caring. I mean he just let you know . . . you can just feel it.

To assert the values of mutuality and reciprocity in relationships among practitioners, children and families does not mean that all parties in such relationships are equal in terms of power. In fact, it is especially in light of the inevitability of power differentials that practitioners are ethically obliged to strive for whatever degree of mutuality and reciprocity is possible. One form of that obligation is to speak in language that is familiar and understandable to children and families.

Here’s how one grandfather put it:  I don’t always speak correctly in everything I say. So I don’t want you to use that against me that I don’t understand everything that you [are] saying, if you get one of those big words out to me, you know, throw it that way. But if you give me time, I might understand what you [are] saying.?

Self-awareness and reflective practice on the part of the practitioner means cultivating awareness on multiple levels, including cognitive, emotional, spiritual, and physical. A sibling I interviewed said:  You need to go in there waiting to see what they bring to you and not bringing what you have. Seeing what the family makeup is and seeing the different roles people have in the family and then supporting them any way that you can, versus bringing your structure into their home, because it doesn’t tend to work very well.

Making time available, finding a quiet place to talk, maintaining eye contact, sitting instead of standing, learning to be empathic — all of these are important tools in the complicated and  challenging endeavor of communicating well with children and families at the end of a child’s life. But our tools will only do their job well if we understand and embrace the relational context in which we use them.

The parents and other family members whose voices appear in this essay convey a clear message to healthcare professionals about what more we need to do. We need to become good readers of children and families, and to bring to our reading a full measure of respect, curiosity, humility, and reflection. We need to see parents as experts, because they know their children better than we do. We need to take a close look at our doctor language and learn how to break it down in order to meet families where they are. We need, above all, to be willing to show our humanness to children and families, just as they so readily show their humanness to us.

David Browning, MSW, BCD, FT is Director of the Initiative for Pediatric Palliative Care, an international educational project for health care professionals aimed at bringing compassionate and culturally respectful care to children with life-threatening conditions and their families. He wishes to thank Elain Meyer, project director of the Program to Enhance Relational and Communication Skills (PERCS) At Children?s Hosptial Boston for her thoughtful collaboration on this article.