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?

[Whit2389]

Hey.. I am a mother of two children with sickle cell disease, they are half white and half black and have type "SD" or "Punjab". To answer your initial question of how to better care for your sickle cell patients.. That would firstly depend on why they are being admitted. They most common reason is a pain crisis, so just like a patient who is post-op or post partum, your provide round the clock pain control. You should speak with the patient about what medications and dosages work best for them, and also let them know that nausea medication is available also. You will want to keep them well hydrated, warm (maybe provide a warm blanket). Keep an eye on there H&H, bilirubin levels, iron levels, O2 sats, provide oxygen as necessary (many prefer the face mask), assess for hx of splenectomy and if there spleen feels enlarged or tender. Assess for any chest pain which can be a sign of acute chest syndrome. Assess urine color, if it is orange or brown then it is probably a sign that there hemoglobin is dropping and you will want to assure them its ok and it is not blood or there kidneys failing. Infection control is another major thing since SCD patients have low immune systems. If it seems that they have a bad attitude right from the start, well it is probably because of what you just stated in your article. You asked for help on how to care for a SC client and all you recieve were unhelpful remarks that made you develop preconcieved notions of your patient. If you would have asked tips on how to care for a diabetic then you would have been told about round the clock insulin injections, assessing for pain and decreased sensation in the lower extremities, proness to MRSA, ulcers, and other infections. That is exactly why sickle cell patients are bitter. They are often not cared for the way they should be and are looked down upon. Did you know that SCD is much more prevalent then cystic fibrosis but wayyy less funded? Because SCD is a minority illness it is seen as less important. Sad but true.Be up front with your patient. Do your duty as a nurse and care for you patient holistically. If your patient seems angry at you then tell them "I notice you seem to be in a bad mood, is there anything I can do for you or anything you would like to discuss?". Or just strike up conversation about there disease "so do you have more flare ups in the winter time?" "Is there anything you think we should know to better take care of you?" Offer to bring pain medicines as scheduled and try to do it. Empathize with your patient, and most importantly, if a nurse ever approaches you with advice on taking care of SC patients, please do not put negative preconceived notions in there head, instead provide them with a better understanding of sickle cell disease and how to hollistically care for them.

[ShantheRN, BSN, RN]

Did you know that SCD is much more prevalent then cystic fibrosis but wayyy less funded? Because SCD is a minority illness it is seen as less important. Sad but true.Be up front with your patient. Do your duty as a nurse and care for you patient holistically. If your patient seems angry at you then tell them "I notice you seem to be in a bad mood, is there anything I can do for you or anything you would like to discuss?". Or just strike up conversation about there disease "so do you have more flare ups in the winter time?" "Is there anything you think we should know to better take care of you?" Offer to bring pain medicines as scheduled and try to do it. Empathize with your patient, and most importantly, if a nurse ever approaches you with advice on taking care of SC patients, please do not put negative preconceived notions in there head, instead provide them with a better understanding of sickle cell disease and how to hollistically care for them.

I know this is a resurrected post but this part of your response compelled me to respond. We have a decent sized SC population, anywhere from toddler age to adult. They're our frequent fliers but unfortunately it's the nature of the disease. These patients are busy, period. Pain crisis can go to acute chest in a scary amount of time. There are some that are constantly on call lights and make me want to tear my hair out, but that's ANY population. A nurse assuming a patient will be bad because of diagnosis is just as wrong as family assuming the staff will treat them poorly because of diagnosis.

I'm too lazy to look up dollar amounts, but SC has some money behind it. They've actually cured the trait in mice :) It's a start. Black people are twice as likely to get diabetes and there's no shortage of research money for it. The lack of funds for SC (and like I said, I don't even know if that's a valid statement) has nothing to do with it being a "minority illness."

I found this article last week - pretty exciting news!

NIH-funded researchers correct sickle cell disease in adult mice

[simonemyheart]

As a nurse with sickle cell I am offended by this post. Very rude

[Horseshoe, BSN, RN]

As a nurse with sickle cell I am offended by this post. Very rude

It would be helpful if you would quote the post you find offensive. The original post? The one which came right before yours? Any number of other posts in the thread?

[healthstar, BSN, RN]

health care providers should stop taking things personally in a hospital setting. Pain screams, surgery screams, change screams, family issues scream, money screams.........it is not the patient!!! I cannot stand nurses who constantly label patients as " drug addicts". Yes, there are some addicts, but it's not fair or good practice to assume that all pts seek meds bc they are addicted.....they have terrible diseases, complications from surgery, incisions.....some can tolerate pain while others cannot. You are an RN , like it or not you are working to serve! If you are not empathetic, compassionate, server, advocate.....you are in th wrong field.

[Been there,done that, ASN, RN]

Patients with Sickle Cell disorder present with crises of their condition throughout their life time.

Some will handle it differently than others.

Chronic pain and .. the fear of the pain.. will bring out the best.. or the worst in these patients.

There is NO excuse to manipulate the system.. ( that is ... calling the shots on your medical management) or to be rude to caregivers.

My father experienced EXCRUCIATING pain from medical errors.. yet always managed a smile for any one that tried to help him. And appreciated any help that they offered.

Not so with some other chronic pain sufferers.

"hey.. I'm tryin' to help ya here... work with me!"

[simonemyheart]

It would be helpful if you would quote the post you find offensive. The original post? The one which came right before yours? Any number of other posts in the thread?

The original one.

[bjaeram]

Sickle cell patients aren't in chronic pain. They have a disease that can put them in crisis causing pain. Most days they are like anyone else. Some go into crisis more then others and some can go a long time between.

Something else not mentioned is you can do simple blood work to determine if someone is in crisis or not. We have a couple of pain in the ass frequent flyers that seem to be drug seekers and we always do the blood work. If it comes back showing they are in crisis they get admitted and medicated. If it comes back normal they are asked to leave......and do so screaming and swearing. One in particular is such a problem security is notified the minute he checks in. I treat him with compassion and I medicate him when warrented. He can be nice some days but when he doesn't get what he wants he quickly turns into a jerk having to be escorted off of the property. He has been in jail for some time and I often wonder how his disease gets treated there. I'm sure not well. I do feel sorry for him and others and I will treat him with compassion HOWEVER he can be a jerk and we as nurses don't deserve to be treated like that for any reason.

Other things like o2 and hydration are as important or more important then pain meds too. We can't forget that!

[abbaking]

I feel compelled to side with the OP. In my experiences, SCC patients are among the worst offenders of the healthcare system. A typical SCC patient profile on my unit looks like this:

1. O2 @2l via nasal cannula is ordered - RARELY have I seen SCC patients wearing the Oxygen

2. Hoarding food - Never eats any of it ...having been homeless at one point, I see this as total and complete Crap!

3. Aggressive personality (mainly the female SCC patients) - Enough said before I get labeled a racist

4. Verbalized pain level and affective behaviors do not match - Saying your pain is a 10/10 while on the IPad, laughing with visitors and texting is not what healthcare providers generally think of with patients having severe agonizing pain.

5. Narcotics - Pain is never under an 8/10 even with Morphine PCA, Fentenyl patch, and PO norco

6. "My way or no way" - They expect it there way cause they have been hospitalized so many times, but you'd think that after so many hospitalizations they would be compliant with care - not usually.

Sounds bad but based on my own experiences, I can attest to this and stand behind my observations

[classicdame, MSN, EdD]

I worked in a city where sickle pts were treated. I got the impression that some only got attention while in the hospital and certainly ate better. Many were difficult to treat - to the point that we could assign one nurse too many as the stress load was too high. These are people who have been in pain since childhool and may be mad at the world, but you feel like a psych nurse. I recommend taking a course on pain management. You will find that chronic pain does affect your attitude and VS, etc are not true indicators of chronic pain. I found it best to ignore the attitude, just provide a service, and get out of the room ASAP.

[BrnEyedGirl, BSN, MSN, RN, APRN]

there are numerous posts about rude, crude patients. it seems that someone always comes to there defense. there is always an excuse for being rude. i don't understand this. is it a generational issue? i will admit that i've never had a life long chronic illness. i was in a car accident and had a t3 fracture once, i've had two children, i had two relatively minor surgeries. never once has it occurred to me to swear at someone!

i can imagine that having a chronic illness would affect every part of my life. i can understand frustration and the attitude of just being sick of being sick. i understand that people often feel out of control and need to feel that they can do something, anything to help themselves. i get that, really i do. but why swear and be nasty? when i was a child my mom often told me that people swear because they aren't smart enough to use "real" words. i'm not sure if it's an issue of intelligence or not, but i honestly can't imagine a situation where it's ok to swear at a complete stranger! why do we keep making excuses for these people? i treat the people with nasty mouths/attitudes as well as the kind ones. it's my job, that's what i do, but i will never believe it's okay to call your nurse a "**********" or the teller at the bank or the guy at the gas station!

[Horseshoe, BSN, RN]

there are numerous posts about rude, crude patients. it seems that someone always comes to there defense. there is always an excuse for being rude. i don't understand this. is it a generational issue?

absolutely not. you can find rude people in all age groups.

i will admit that i've never had a life long chronic illness.

therefore it can be hard to understand why people who do suffer from lifelong, debilitating pain might not display the best behavior when they are sick, hurting, and are getting pushback from nurses who display their own judgmental, non compassionate behavior.

i can imagine that having a chronic illness would affect every part of my life. i can understand frustration and the attitude of just being sick of being sick. i understand that people often feel out of control and need to feel that they can do something, anything to help themselves. i get that, really i do. but why swear and be nasty? when i was a child my mom often told me that people swear because they aren't smart enough to use "real" words. i'm not sure if it's an issue of intelligence or not, but i honestly can't imagine a situation where it's ok to swear at a complete stranger! why do we keep making excuses for these people?

i don't think many people would think it's "okay" to swear or be rude. i just think that many nurses, while not excusing it, understand how it happens and how a life full of pain and terrible quality of life can cause a patient to become bitter and angry. most nurses handle it well, but there are plenty out there who will assume every patient who asks for pain medicine is "faking" or "seeking" and treat those patients like crap. enough of that might make a *&%#@ out of me, too. hope not, but i could see how it could happen.