Jordan is a Hard Road to Travel

Here is something that I would like to ask each resident. Think of a doctor or nurse at your hospital — someone who deals with very ill or terminally ill patients on a regular basis. Have you ever wondered where they find the strength and motivation to return to work when a patient dies? Have you decided for yourself what will keep you returning to work after your residency is over?

The Hard Road

Jordan is a hard road to travel. This is the refrain from a song of the same name. Since I had my own hard road to travel, I wondered what is "Jordan"? I discovered that the refrain refers to the line between a difficult existence and the promise of a better one. For Jordan to be a hard road suggests that getting to the Promised Land requires much hard work.

In the context of this discussion, we have our own Jordan — the line between illness and health. We are trying to deliver our children over this river. Their Promised Land is a full life, an unknown but wonderful place where their destiny waits for them. This is a hard road that doctors and parents share for a while.

A common thread of discussion among parents of terminally ill children is how do you get through each day when you know what the eventual outcome will be for your child? Why would we even start our journey to Jordan if we knew we could never get there? And what do we do when the hope of a cure disappears like a desert mirage?

There are no easy answers to this question. We started our journey hoping for a cure, despite the long odds. We were extremely fortunate to have had 12 months where we could travel to the Jordan of a full life. When progression set in, we had to change our destination. Jordan was no longer the line between illness and health. Jordan became simply the line between today and tomorrow. We wanted as many tomorrows as possible for Faith. This was the hardest road of all.

Your Journey

So how did Faith’s medical staff deal with this hard road? I had any number of conversations with her doctors and oncology nurses where I attempted to express my sympathy to them. By and large, their response was the same: I shouldn’t worry about them; their grief could be nothing like mine. But I always wondered: whereas I only had to deal with the death of my child, how could they deal with the accumulated grief of losing so many patients?

I never debated the point with these doctors and nurses for three reasons:

So where will you find the strength to journey these roads with your patients? How will you protect your sanity? How will you protect your privacy? How will keep from growing cynical? How will you balance the need to be compassionate with the need to be detached and analytical? What will you do when you know that your best won’t save the patient? And what will you do with your grief?

I don’t have the answers to any of these questions. You will each need to work this out for yourself. Indeed, Jordan is a hard road to travel.