I am a terrible terrible person but I spend much of time of at work feeling quite frustrated by family members of my patients. Okay, that's an exagerration, it's not that much time. But proportionately, the amount of frustration I feel towards them is much more than I should (like never) since their loved ones are super sick, dying, in pain, all of the above.
So last night my fellow RN/friend fielded an early-morning phone call from a family member, and from listening to her end of the twenty-minute phone call, and watching the expressions on her face, I knew it was the exact type of phone call we've both taken many many times before. A concerned family member/friend calls, in our night-shifty case, early in the morning, and wants to be updated on their friend's condition. And here is where the Great Divide in understanding and information begins, from health care provider to family member.
ConcernedFamilyMember ["Connie"]: So, how is my sister? ["Susie"]? Any changes over night?
Nurse: (after verifying through several means and fingerprints and a hair sample that this person is who she says is and can be privy to Susie's super-secret-private health care information). She's doing okay, there were no major changes to her condition over night.
Connie: Oh good, so she's doing better then?
Nurse: Well, she's staying about the same. But she didn't make any changes for the worse, so that's a good thing.
Connie: Well that's good! Is she awake?
Nurse: Not exactly. She's on a lot of sedation and pain medication right now.
Connie: Oh. But shouldn't we wake her up? Is it bad that she's so sedated?
Nurse: No, it's actually a good thing. If her sedation levels are decreased, she tries to pull out her breathing tube and she grimaces like she's in pain, so we're trying to keep her very comfortable.
Connie: Well, if she's more awake, maybe she'll breath better on her own? And come out of the ICU sooner?
Here's where Nurse quietly takes a deep breath, closes her eyes, and starts to continue this conversation privately in her head, not saying what she actually wants to...
Nurse: No, she's not ready to breathe on her own yet, we do breathing trials everyday to determine that. But thanks for your opinion, even though you are not a medical professional, we really need people like you to do our jobs because otherwise we never would have considering your very educated point. Where do you work? Can I come and watch you, and tell you how I think you should do your job? I bet I don't need any special training either.
Connie: So how much longer then? A few days? A week?
Nurse: There's no way to say that at this point, as she's still dependent on dialysis since her kidneys aren't working yet, and she's on several heart and blood pressure medications...
Connie: Are those medications something she'll be able to take when she goes home?
Nurse: No, those medications are currently only in IV form, and they have to be running continuously... Or she'll die. Do you get that? She's super sick and has a high chance of dying. She's on life support and the ventilator and drips are the only things keeping her alive, minute to minute. If we could give her a pill and let her go home, believe me, we would have done it.
Connie: Because my Uncle Harry...he was on dialysis, but he got to go just a few times a week, and he was fine. And he was on this medication that made him make more urine. Have the doctors tried that? Since Susie's not peeing?
Nurse: Every case is very different. The doctors are doing everything they can to support Susie until her system starts to be able to recover on it's own. And again, thanks for your expert opinion. I'll pass it on to the docs, since they're really not actually doing anything, and your idea is probably the best they've heard all day.
Connie: Okay. Also, I noticed her toenails are looking kind of yellow, when I was there yesterday. She usually puts some cream on them for fungus or something. Does she still have that? Because she needs that twice a day.
Nurse: I'll will look into that, and make sure that's being addressed. Because that's super important. Because you know what else? Her kidneys shut down and her heart isn't sending enough blood to her toes and her medications are making them turn black and her lungs are filling with fluid and blood and she has clots throughout her liver that makes the rest of her skin look yellow and I need to change the dressings over her blistering skin and make sure her cardiac drip doesn't run out and suction her so she gets oxygen but dammit, her toes better not have fungus! I guess I am a lazy nurse because I didn't even put her toe cream on.
Connie: Yeah, because she needs that twice a day. I can bring some in if you don't have any there. And is her purple quilt in her room? Because that looks really pretty on her.
Nurse: Don't worry about it, we can get some here. And yes, the quilt is there. But it's on the chair, not on her. If it were on her it might get covered in liquid green stool, mucus, or blood. Probably all three. And also, you should be worrying about Susie's life, not Susie's toes. You should be hugging her children and thinking about how she lived her life, and how she'd want her life to end. You should be just sitting near her, if you can, and telling her how special she is, and playing her favorite music, or taking her dogs to the park and scratching them behind the ears, and not going to the pharmacy for her toe cream. Because Susie is very near death and this is going to be a terrible way for Susie to die. Do you get that?
Connie: Well, thanks for filling me in. I'll be in later in the afternoon. If you get a chance, let Susie know that I called. And that...we love her.
Then her voice cracks, and my eyes fill up, and I sigh and head into Susie's room to adjust her blood pressure drip and look for the toe cream.