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When knowing changes everything, the value of a map (Part 2)

Many of you felt so strongly about the on-going need to underscore ways to help people identify end-of- life maps that I have decided to create a mini blog series devoted to this topic. You already know the power of end-of-life maps, so I will skip the pontificating and just tell you this true story:

An elderly male, Mr Holmes, came to one of my beds in the ER from EMS. He had been having “trouble breathing for a few weeks but it suddenly became worse over the weekend” according to the paramedic.

When I walked into his room and heard the loud noisy breathing coming from this man, I was a bit shocked and thought “trouble breathing” was an understatement. Mr Holmes sounded like he was breathing through a bent straw or something even smaller. His wife had ridden in with the ambulance and since Mr Holmes could only shake his head “yes” or “no” to my questions, I quickly sat his wife down to figure out what was going on.

When asking her questions, I attempted to appear calmer and more patient than I felt. My instinct was to just skip the questioning, excuse her from the room, and stick a breathing tube in him one way or another; but, that’s not the right way to handle these situations. So, I remained calm and got the information I needed to make my next move, or not. These were the key answers I got from Mrs Holmes:

“He has just been diagnosed with cancer, and we know that it’s spread.”

“He didn’t want any chemotherapy. He told them that 88 year old men don’t need that kind of medicine.”

“We don’t want any life support stuff and no surgeries. We have talked about this.”

“Whew.” When my nurses and I heard this, we breathed a sigh of relief. My respiratory therapist, who had given Mr Holmes a special breathing treatment, took my cue to “stand down” and return the artificial respirator that she had already positioned outside the room.

After turning off this “intubate him by any means” switch, we were then able to return our attention to the “big picture.”

It seemed to me that he had developed a rather rapid and progressive airway obstruction likely due to some tumor wreaking havoc in his neck. But his wife had already made it clear that they did not want any aggressive interventions. So, I ordered some labs and imaging studies to see “where we were on the map” a bit more clearly (although his breathing alone suggested that we were imminently close to the end of his road.)

Family members gathered at his bedside as labs and data trickled in. I shuffled the test results in my hands and prepared to go in to greet this now rather large group of relatives.

I walked in slightly nervously and introduced myself. Immediately, I launched into my best “end-of-life map” soliloquy that I could muster at that moment—“this is the big picture,” “these are the supporting data results,” “I think what this means is…”

The family listened patiently to me and finally, the eldest son interrupted me, “Doctor, are you trying to tell us that Daddy is dying?”

Taken by surprise, hesitantly, I simply said, “Why, yes.”

He then paused, and looked at me with a type of compassion and said, “Doctor, we really appreciate you spending this time with us and telling us about his test results, and all. But, you see, we already knew that Daddy is dying, he told us so this morning.”

The greatest power lies with the patient. If the one who is facing the end-of-life can clearly identify the path and the landmarks for his or her family, and if they will listen, then my role as healthcare provider becomes secondary and supportive, not primary and directive.

Mr Holmes’ family didn’t need my map, they had their own, and he gave it to them himself. My job was just to follow him and make sure his journey ended well.

Written for by Monica Williams-Murphy, MD
(As always, names and elements of these patient stories have been changed to protect the privacy of the patient and the family. Date of publication has no relevance to the date of the actual patient encounter.)