I want someone who will protect me when I am sick and vulnerable.
I know I am at your mercy.
When I am so sick, I cannot tell or remember how many people are in the room, or protect myself …
… against hands in private places, watching me for breathing, heart rate, blood pressure, how much urine I am putting out, cleaning me, turning me, monitoring my pain and figuring out if I am cold and need another blanket… I need you to watch for me.
I know that you are watching the ventilator like a hawk, for breathing patterns, how well I am getting oxygen into my body, am I meeting the pulse oximeter parameters and getting over 90%. I know you are busy keeping intravenous blood pressure medications going to keep my blood pressure up because I am so sick my body doesn’t even have the energy to keep a normal blood pressure. I know you are hanging multiple antibiotics to help me get over infections. I know you are working with a respiratory therapist to get my nebulizer treatments on time and, call them for the extra neb today because my breathing is harder. I know you are trying to keep me well sedated so I will tolerate being on the ventilator without trying to rip all my tubes and IV’s out.
I know you are working hard and probably didn’t get lunch today. But…
I need you to know what you are doing. Do you know how the medications work? Do you know how to titrate the blood pressure medications? Do know how to balance sedation and pain medication? Are you medicating me for pain or just increasing my sedation so I’ll stop moving?
And if, God forbid, you need to paralyze me during a procedure or on the ventilator… I will tell you now, that there better be a good reason. And not to just stop me from moving. Do you know the reasons to paralyze someone? Do you know how to test for level of sedation and consciousness when a patient is paralyzed? Do you know how to intellectually and emotionally care for someone who is paralyzed?
Would you know when to refuse a physician request for a paralytic?
If you don’t know these things, I don’t want you making decisions for me. I am not here “just to give you a chance to learn” so you can play with all the technology.
I need you to know what you are doing so you can make the best decisions on how to use the medications to treat me that will save my life.
I need you to do all that and, see past the machines.
I need you to remember that I am a person laying in the bed. I have thoughts and fears. I have ideas of how I would want to be cared for. I have a life I am missing and that I hope misses me. I have family and friends that are sitting there watching everything you are doing and hoping you are good at what you do. Because your care may be the thing that gets me back to them and my life… or not.
Don’t yell at me or get frustrated at me and tell me to lie still.
I am terribly sick, sedated on potent medications that put me into a medical coma and induces amnesia. I don’t know and won’t remember what is happening, what you are saying, or why you are saying it. Even if I am moving around a bit, pulling at my restraints or acting a bit restless.. I have no idea what you are doing or what is going on. I am probably dreaming I am at the beach and some bird is flying over my face and blocking the sun and my view of Benedict Cumberbatch in a swim suit bringing me a rum drink.
I am not 20 years old. I do not want to be naked for a bath. I don’t care how convenient you say it is to just strip off my gown and give me a quick wash down… I won’t like it. And if my family sees that, they will be mad and ask for a blanket. I don’t walk around in my house naked in front of strangers. So I don’t want to be naked in front of you. You didn’t learn to bathe people that way in nursing school. Take the extra second to cover me and wash a part at a time. You think it’s convenient… I think it borders on abuse.
Thank you for cleaning me when I urinate or have a stool. I know it’s not the most glamorous part of the job. But it is part of critical care and we don’t have control over their bodies. I will ask you to just keep one pair of hands… down there. You don’t need 3 pairs of hands … down there to clean me. How many hands would you like… down there?
Dignity please. Even if I can’t ask. And… I shouldn’t have to ask.
So many medical conditions leave us incredibly vulnerable. Not just vulnerable, but at the mercy of many people that will encounter me that I have no idea that are there
When my friend and Medical Power of Attorney [who is a masters prepared nurse clinician] visited, you tried to tell her she couldn’t visit because of HIPPA. Thankfully, she told you you were wrong. I will tell you now that any of my friends and family can visit. Don’t restrict my visitors. They understand that HIPPA laws don’t mean that you can restrict visiting even if they don’t know the secret ‘Batman’ code to get the daily details. I need to hear their voices and feel their hands. They keep me connected.
When I woke up the moment you took the ventilator tubes out, apparently you saw my eyes open and started rambling a thousand things at me. I didn’t hear any of it. And even today, I don’t remember one word of what you said. I didn’t even know how my own doctor got there. Only to find out that when I was sedated… not enough, apparently… she walked by my room and I sat straight up in bed… on the ventilator and sedation… and waved her in. I apparently nodded fervently that I wanted her to take over my case. You thought I was awake. I wasn’t. But apparently I knew what I wanted. And I wanted her. Even in that condition, I knew she would keep me safe.
Please don’t forget to wash my hair and make my bed with hospital corners. Don’t just throw something over me in a crumpled pile. I want to look nice when my family and friends arrive… even if I don’t know they are there.
I know I am at your mercy. I need you to keep me safe, protect my dignity and give me your best.
[Original Post 04/10/2015]