Who owns my hope?

This week I attended our hospital's annual bioethics day. Our featured speaker was Chris Feudtner, MD, PhD, MPH. Dr. Feudtner is a pediatrician at Children's Hospital of Philadelphia. He specializes in bereavement, end of life issues, and palliative care. In addition to Dr. Feudtner we had two panels made up of parents and patients, including a mother whose son died recently, from cancer, at the age of three.

I was deeply moved not only by the panelists' stories, but also by Dr. Feudtner's kind and calm discussion of very complex issues that have to do with the dance that occurs when families of sick children meet the medical team around the bedside for decision-making. The topic was "Hope: Help or Hindrance", and while immediately the parent in me was already armed for combat regarding that last word in the title, I am glad I removed my weapons at the door and listened. Because Dr. Feudtner talked about listening, about how to sit and talk with families about hope, and how to come up with "alternate hopes" for situations that are so difficult they can't really be simply described.

Too often the medical team begins talking to parents who must receive a bad diagnosis or prognosis as though the aim of the conversation that is about to occur-the goal for the conversation itself-is to manage hope instead of tell the truth. As though it were somehow vitally important to simultaneously tell the truth about the medical condition and best-guess of prognosis, and destroy any hopeful response at the same time.

And "who owns that hope?" is what I am always tempted to respond. Whose hope is it, and when did it become yours to mold and shape?

From my point of view, it's the team's responsibility to give truthful information in difficult situations, and to be therapeutic in relationship with the parent as part of the professional duty to that parent, since children are not experiencing illness or disability in isolation but in family. It may be your responsibility to help the parent work through what kind of hopes to have, and how to have them, and how to change them as time goes on. But it's not your responsibility to destroy them.

You don't own them, after all.

mary