The day-to-day life of a palliative care nurse, involves seeing patients who have been critically injured or have a chronic illness they are dying as a result of. When meeting with them (and their families) the most often UN-asked question is "how long do I/they have?". When people don't ask, it's usually because they are afraid, because they think the doctor would tell them if they knew (don't bet on it), or sometimes they just don't want to know.
When I have a meeting where no one asks, I usually bring it up, and find out if they want to know what I think. Sometimes they do, sometimes they don't. Family members often do. If they want to know, and the patient doesn't, we talk outside the room. These conversations always begin with the fact that accurate prognostication is one of the most difficult things we do. It is also accompanied by an explanation that we are likely to be wrong, that we use the best tools we have, and it's important for them to understand that everyone's body shuts down in it's own time.
This week I took care of an 80 year old woman who was imminently dying for 5 days. Each day on our rounds, I could see her children questioning themselves, wondering if they did the right thing. "If she is taking this long to die maybe we gave up on her too soon?" People are surprised that someone can live for days and even weeks without eating or drinking anything at all. But they can. And they do. And it doesn't mean a wrong decision was made, it just means there are things we have no control over.
We do have control over making sure dying people are comfortable, that their family members are supported, that we visit them often even though there is nothing to offer other than support, answering questions, telling them what we are seeing, and providing reassurances that they are doing the right thing. Prolonged dying is a recognized phenomenon in the medical literature. We can't predict which patients may experience it. My hope is that this 400 word tutorial on the topic will help YOU know it happens. Regularly.
We are all in this living and dying thing together. I like to think one day we'll be as comfortable talking about, and supporting each other through dying, in the same way we do the other ordinary moments of life.