What is up with these Sickle Cell Patients?!

Faeriewand, ASN, RN · Feb 2, 2011

My experience has been different. I work in a small hospital and we don't have very many pts with that diagnosis but so far it's been like any other patient with pain issues. I just teach to keep hydrated, no smoking. I can't think what else right now. Perhaps a more experienced nurse will chime in.

Turd Ferguson · Feb 2, 2011

They have chronic unrelieved pain... how would you feel?

LaughingRN · Feb 2, 2011

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?

What came first, the chicken or the egg? Are they acting "horribly" because they are being viewed this way before they even get their foot in the door of the hospital? Or are they all truly horrible people that deserve the reputation of rude, addicts, manipulators & liars (doubtful)? OR is this a perfect example of a positive feedback system?

Sad all round in my opinion.

btw sickle cell is a real disease with very real pain

leslie :-D · Feb 2, 2011

i agree, tough population to deal with.

it's my belief that some are actual addicts, whereas many others have acquired their defenses towards those who treat them presumptuously and contemptuously.

and while they may be managed with their pain crises, so many fear the onset of another...

thus, the anxiety you note, when demanding their next dose.

i'm curious though...

when you state their labs are normal, except for what is expected in sc...

how do you suppose anemia and vaso-occlusion presents?

do you think there'd be pain? ms changes (r/t hypoxia)?

and again, all the psych factors that come along with chronic disease.

i find that reassurance and limit-setting, works well.

the pt needs and wants to trust you, the nurse.

if they feel their needs will be met, it makes for a smoother, more therapeutic relationship.

once they believe you'll give them their meds w/o judgment, you then can tell them to knock their other crap off.

please, be patient.

it sucks to be in crisis, and the anticipation alone, is enough to set us all off.

leslie

joyouter · Feb 2, 2011

I can empathize with your frustration when meeting rude and manipulative patients. It is also worthwhile remembering that such behavior is not exclusive to the disease as this behaviour can be seen in many illnesses. You have stated that you are a new grad therefore, you are learning on the job as such. I have worked with Sickle Cell patients. There are significant points to remember.

1.Pain both chronic and acute pain plagues all Sickle cell patients. The goal is therefore good and effective pain relief. Along with this is the obvious risk of narcotic dependence which develops from continuing use of narcotics. Pain is a debilitating symptom, and can be viewed as a disease in itself, which is why in dealing with Sickle Cell, you are looking at not only hematological changes, ie. red cell anemia, oxygen carrying capacity and the pain to joints and tissues caused by malformed red cells, you must also consider the psychological impact.

I found it helpful to address these issues respecting both the patient's fear of labeling "addict" which is an unfortunate and common stance taken in the disease. Historically, Sickle Cell disease and Sickle Cell Trait, as you know, developed in Africa, as a natural defense against malaria. When slaves were transported to the US, they came with the disease and its genetic pattern. Therefore, what was nature's way to protect against deadly tropical malaria became a debilitating, crippling disease with unfortunate outcomes, affecting a patient's economy, status and inducing a dependence on narcotics for relief of pain. There is some interesting research for treatment and cure on the disease, and it would be helpful to research the subject.

There is also the relation between Sickle Cell and Thalassemia, another red cell disease affecting Mediterranean and middle eastern populations.

African American persons or offspring of persons with African Americans can be carriers of the gene, which by the way, is passed through the maternal gene. So when you next see your patient, recall that you are looking at a complex history and unfortunate consequences. Pain relief has specific patterns for care, including psychology and illness produces poverty, depression and fear. Just food for thought.

st4rl4dy · Feb 2, 2011

Patients feed off their careivers energy, i see this a lot in dementia patients and patients who have been labeled difficult. It doesn't take long for someone to find out that they have been labeled difficult or noncompliant. Next time you come across one of these patients, envision the nicest patient you have ever had and trea this patient like them, attitude, smiling and tone of voice. Chronic pain does strange things to people and people act strangely when it sounds like you are tlaking down on them. Maybe just when you get a couple of mintues take them ice water, sit down and just start talking to them. I came to check on you, see if you needed anything. These are just somethings i've tried, sometimes it works, sometimes it doesn;t.

BrandNewbieNurse · Feb 2, 2011

Patients feed off their careivers energy, i see this a lot in dementia patients and patients who have been labeled difficult. It doesn't take long for someone to find out that they have been labeled difficult or noncompliant. Next time you come across one of these patients, envision the nicest patient you have ever had and trea this patient like them, attitude, smiling and tone of voice. Chronic pain does strange things to people and people act strangely when it sounds like you are tlaking down on them. Maybe just when you get a couple of mintues take them ice water, sit down and just start talking to them. I came to check on you, see if you needed anything. These are just somethings i've tried, sometimes it works, sometimes it doesn;t.

Thanks for all the replies so far.

I definitely went into this profession with an open heart and open mind. I've run into a handful of jaded nurses and I don't want to end up like that. As far as the above post, I did try that angle as well and I will always keep trying with all my future patients. I know this disease is terrible and debilitating and pain can make a lot of us act in crazy ways, but the reason I posted the question is because I was seeing a pattern.

LegzRN · Feb 2, 2011

I've had many patients in SCC, but I've never known one to mess with their IV line. I'm guessing your patients have a central due to no/poor peripheral access. I had one patient who was in sickle cell crisis who truly was an addict. I knew this because she told me, and although she was an addict, I knew she was in pain. I was barely able to get a 22gauge in her and I told her to be very careful with the line because it was probably the only thing keeping her from a PICC, and she told me straight out that she wouldn't ever dare touch it because it was her only means of getting dilaudid. I really liked this patient... she was real with me and showed me a different perspective of pain. Addiction is just as much a disease process as anything else out there.

Horseshoe, BSN, RN · Feb 2, 2011

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.

perhaps patient x is physically dependent upon pain medicine. or perhaps patient x is addicted to pain relief.

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).

it sounds like perhaps your nursing education was lacking in one small point. people who have chronic, debilitating pain often no longer show any outward signs of pain, particularly with regard to vital signs. over time, their bodies compensate and their autonomic nervous systems no longer set off a catecholamine response to pain. do not assume that your sickle cell patients are not experiencing pain simply because their vital signs are stable or they have managed to distract themselves from it for brief periods.

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?

have you ever experienced severe, chronic, unrelenting pain for years on end? i think it could definitely sour my disposition, especially if the people who are supposed to understand my condition and show compassion for it treat me as a "liar," "addict," and "drug-seeking." i'd also probably be drug seeking as well if these same caregivers denied me pain relief because of their prejudices and preconceived notions about my condition.

please give this some thought-don't let hardened, beaten down nurses infect your good will and ability to help your patients who are living with a condition which is often almost unbearable.

don't take your patients' bitterness personally. understand that they are likely projecting their frustrations about their situation on you, but it doesn't actually have anything to do with you.

RoyalPrince · Feb 2, 2011

Just last night I had a patient 21 years old with a Portacath in place, dilaudid q3h She has a laptop and an iphone programmed to ring every 3 hours and knows how to work the IV machine very well. She frequently disconnects her tubing and than resets counter on IVF. Oh and if you are more than 5 min late with the dilaudid she will turn off call bell from wall and turn it on again if you still do not show up she will disconnect everything and come to the Charge RN.

Every hour of the night she surfs the web and watches shows, she eats sandwich and ginger ale and when she finally gets discharged - she does not go home, she goes to the nearest ER and gets admitted under Service doctor there due to "No PMD"

I know their pain is real, addiction is real, and I tolerate their behavior because I see they had hard times.. so I just give it as prescribed and shut up.

Sun0408, ASN, RN · Feb 2, 2011

I have had several chronic pain pts set alarms to remind them or wake them when pain meds are due.. I don't see an issue with it.. Cancer pts have pain and do not want it top return full force so getting their meds on time, every time helps keep it under control. Same for SC pts.. It is painful and not all are addicts, they have a high tolerance now.

I know I would have a major chip on my shoulder also if everyone that was there to help me thought I was just drug seeking. KWIM..

I am sure they have had those looks many times before and have set up this "rude" behavior as a way of dealing or getting even for all of the judgemental looks and comments..

These types of pts do have real pain, treat them the way you would want to be treated if you were in their shoes... I do have my fair share of pts that do not have chronic pain issues, cancer or SC or any other painful disease and want iv dilaudid for a paper cut lol... Just do the best you can and assure your pts you are there to help :)