What is up with these Sickle Cell Patients?!

[BrandNewbieNurse]

Hi everyone,

So just a little background...just like the name says, I am a brand new nurse. Where I went to school and did my clinicals was a part of the country that didn't have much diversity, so I never ran into patients with Sickle Cell. Where I work now is a very busy, inner city teaching hospital with an abundance of patients with this diagnosis.

So anyway, after getting report for my sickle cell patients, I asked the reporting nurse and my preceptor for any tips or words of wisdom on how to provide the best care for my sickle cell patients. Their answers were, "Oh, you'll see. You'll learn quick..." They weren't kidding. I am not trying to categorize sickle cell patients, but the ones I've had are by far the worst, rudest, and ill-natured people I have ever run into in the health care setting.

For example, we have patient X who is an addict. This patient has a high dosage IV Dilaudid ordered PRN for pain every 3 hours and she has an alarm going off telling him/her when he/she is due. Patient is so rude to the nurses and aides. She gets her meds on time every time but complains about every thing and tries to get the staff pitted against each other with manipulation and lies. Patient X also keeps messing with her central line and being non-compliant with the plan of care. Patient Z is the same exact way, just add more cursing and attitude. Mind you, these patients are constantly on their phone and computers showing no outward signs of pain, no change in VS to signal pain, no anxiety, normal labs (minus what is expected for sickle cell). Patient Z goes as far as messing with her IV pump and changing drip settings and trying to be slick by stealing syringes and needles if he/she thinks the nurse is not watching him/her like a hawk. Both these patients are suspected of doing something with their central lines because they both have problems with them. If you ask any of the nurses, they all say the same thing. I feel terrible that the sickle patients are under this predetermined category in this setting, but they all seem to put themselves there.....rude, drug-seeking, addicts, manipulators, non-compliant, liars. The ones I have had will not hear you out no matter what angle you use. It's like their dx gives them an excuse to be horrible human beings...

What has your experience been? I know these patients are sick and in pain, but why act like nightmare people or nightmare patients?

[traumaRUs, MSN, APRN]

I care for several ESRD pts with sickle cell. I try to manage their pain and work with them to develop a pain protocol. They do have very high tolerances and I'm very careful to always document completely as we (providers) now have a huge risk in prescribing chronic opioids. For sickle cell pts though this is what works.

[anewsns]

To be fair, poor pain control, especially in early stages of crisis, can alter the course of their ENTIRE illness! Sickle cell patients know this better than healthcare providers. I think they are just cranky from the pain and also having to advocate for themselves all the time against providers who don’t always believe them and becuse they are so difficult , we kind of avoid them and that makes them even more difficult! They’re sick and tired of being sick and tired. The more severely affected patients seem to have awful behaviors. Despite my theoretical understanding of these patients, I do not like caring for them in reality at all! Fibromyalgia patients are often like this as well. Pain conditions suck for people.

[catsmeow1972, BSN, RN]

I spent a year working in a small town ER and have memories of 2 standout patients. The best way to describe this town was ‘if Mayberry had a ghetto.’ Biggest employers were the prisons and Wal Mart. This little ER saw a lot of drug seekers and folks that used the ER as primary care for lack of any other access.

Pt #1 was a young lady with sickle cell. Occasionally came in from the county jail with a deputy escort. Definitely veered towards addict tendencies. If she was wanting more dilaudid than she currently had, she was belligerent and mean. If she was veering into crisis, she was quiet and curled up on the bed.

pt #2 was also a young lady with ESRD, hypertension, a seizure disorder and I think a few other things, and as non compliant as they come. She went to dialysis very infrequently and of course had all of the sequelae that comes with that. Her cocktail of choice happened to be Demerol and Phenergan.

They both had reputations for being generally horrible patients. You knew who they were as soon as EMS radioed with report. The eye rolling and nasty comments started.

i always got on well with the both because I figured with #1, it wasn’t up to me to judge crisis vs ‘fix.’ If it was a fix she wanted, sorry I’m not into rehab, she still gets respected and comforted like any other patient. With #2, noncompliance was her choice. My private thoughts were that I think that she knew she wasn’t going to live very long so she was going to enjoy life and for her that meant going out and partying, even if that inevitably landed her in my care. I never disrespected her and kept her comfortable when she was my patient even if that meant requesting her Demerol and Phenerghan when she asked.

Point? Yes, some people are just plain nasty but more often it’s a learned defense mechanism. If you try to determine the difference yourself (instead of listening to others) you can make a world of difference to someone, even if only for a little while. ?

[Persephone Paige, ADN]

They've basically been handed a raw deal. Many of the sickle cell patients I've had were in a lot of pain. Try and ask yourself how you would feel were this your fate?

1. Very great chance of dying young

2. In pain

If course they are drug seeking, their tolerance is sky high. Let it roll off...

[PhyllisMSN, MSN, RN]

I have worked my entire career in urban areas. These patients are very sick and in so much pain. They have been in the hospital since they have been infants. They have also been on hard narcotics since they were

little children. It is a terrible disease and sometimes I find myself getting frustrated with them. I try and put myself in their shoes. They have had healthcare providers to look at them like they are nothing but drug addicts. They do not have normal childhoods.

[que_linda]

terrible.

[NurseinHyrule, BSN]

WOW. Considering sickle cell disease is predominately seen in African Americans, I'm going to say you may want to reevaluate your choice of career. I always say; even if the devil himself drop dead in front of me, if he's a full code then I will resuscitate him. Being a nurse means being a nurse for everyone.

[KingJames1227]

is it me or do this article from band newbie nurse has racist written all over it? code words like "inner city" "less diverse" "these people" we all know black people are generally more susceptible to having the sickle cell trait. you are taking pre conceived notions and using them to judge sick people. in my honest opinon.

[PhyllisMSN, MSN, RN]

There are indeed bias in Nursing whether we want to admit it or not. The sickle cell patients have tremendous pain all over. They are given narcotics from the age of two and three years old to control pain. Yes these patients have tolerance not addiction and they need to be treated with respect.

[PhyllisMSN, MSN, RN]

Brandi you have a lot to learn about pain and compassion. Imagine every bone every muscle every joint in your body hurting 24/7. These patients have been in the hospital since they’ve been one and two years old. They are probably manipulative and slick acting because they’ve had horrible experiences with nurses being judgmental.

[VivaLasViejas, ASN, RN]

This thread is from 2011. Hopefully the "newbie" (who is no longer a newbie) has since learned how to handle these challenging patients and get along well with them. I don't think she lacked compassion, she just needed to be shown that SC patients are human too and deserving of good care regardless of their status. 'Nuff said, at least by me.

[Snatchedwig, BSN, CNA, LPN, RN]

Educate yourself on pathophysiology of said diagnosis. That is an incredibly painful ailment. It sucks even more when the people who supposed to care and advocate for them is calling them a addict and not believing their pain. Its YOUR job to treat them. If their pain isn't being relieved you will need to assess the degree of sickle of the RBC to prevent vascular stasis which in turn causes this.