Patient Advocacy

My attempt to capture some lessons learned.

Watch what the nurses do so you can do it when they aren’t around. Learn how to adjust central lines, unclog NG tubes, drain chest tubes, find supplies (blankets, gloves, plastic bags), and anything else to make life better.

Learn what all the wires and tubes are connected to and why. When something runs out, you don’t have to say “something is blinking again” but can say “we need more TPN - stat” … and with authority.

Don’t wait for the intercom to bring someone running. Go to the station and ask for help. Try being nice about it too.

Stay overnight (see previous post)

Write down what happens so you remember later. Like where you put your parking ticket. And if you have time, jot down what was administered when.

Ask a lot of dumb questions. Like “Can we get a light bulb?”

Know what is next. Like “when do the dreaded chest tubes come out?”

Don’t whisper with the nurse while glancing nervously at the one in the bed.

Don’t touch the JPs without gloves (wasn’t told this until the third day) – ask more dumb questions sooner. Like “Why do you wear gloves to do that? Should we?”

Don't stop praying.

Know what she needs. Make her smile, but don’t go so far as to make her laugh.

Ask for what you need. Like “We need gloves larger than mediums. We also need a light bulb.”

Stay in touch. Loved ones want to know what is going on.

Bring a friend. Tom is great.

Say you’re 1/3 done, not 4 more hours.

Cover their behind when they can’t.

Be patient. It may take more than 4 days to get a light bulb.

Do it better next time. Improve when you can. By the time we’re done with this chemo thing, we’ll be experts.

Simple things are appreciated like ice chips and back scratches.

Take it seriously but don’t make it too serious.

Anticipate the next request. After the turn, have the spoon and ice ready before she opens her mouth.

Holding hands is one of those simple things.