What is up with these Sickle Cell Patients?!

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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?

i'm not a nurse yet but my aunt has sick cell and its so sad how bad she is treated by doctors and nurses ( she has one good doctor that knows a lot about sick cell and 2 nurse that understand her)

my aunt has had doctors say " give up the act or i know this room is nice but its time for u to go home"

nurse and doctor lable her as a drug seeker just because she not crying in pain mmm do they say that to cancer ppl

sick cell anemia ur born with it so over time u deal with the pain (dont show it ) my aunt could be in a 10 pain and still laugh or read a book

i wish more doctors and nurse would learn more about sick cell

p.s. my aunt is in a sick cell group and they have the same stories of being mistreated it makes me sick thats why i want to be a nurse i hope i can work with sick cell ppl

Specializes in ER.
I disagree with this. Admittedly the chronic pain and narcotic treatment will likely lead to dependence. That is not the same thing as abuse, and I don't believe abuse is inevitable for "most."

woops - didn't *necessarily* mean abuse. Dependence, yes. Sometimes abuse.

Thanks to everyone who responded! I certainly learned a lot and will apply a lot of the lessons for my future patients!

Another preceptor just told me the other night, "Always keep that vitality, sense of urgency, and purity as a new grad. Don't end up being like some nurses here that mirror misery on people around them."

Specializes in ER.
i'm not a nurse yet but my aunt has sick cell and its so sad how bad she is treated by doctors and nurses ( she has one good doctor that knows a lot about sick cell and 2 nurse that understand her)

my aunt has had doctors say " give up the act or i know this room is nice but its time for u to go home"

nurse and doctor lable her as a drug seeker just because she not crying in pain mmm do they say that to cancer ppl

sick cell anemia ur born with it so over time u deal with the pain (dont show it ) my aunt could be in a 10 pain and still laugh or read a book

i wish more doctors and nurse would learn more about sick cell

p.s. my aunt is in a sick cell group and they have the same stories of being mistreated it makes me sick thats why i want to be a nurse i hope i can work with sick cell ppl

it is difficult to read your post with all of the "text" writing...

just my two cents....

Specializes in Critical Care.

You know, there have been some great posts here. AACN had an article on pain management, talking about acute pain versus chronic pain, just completed the module for my license renewal. I've had to deal with patients with chronic pain for years who come in for cardiac surgery..I've never had the topic addressed quite this way and it helped me better understand the issues of chronic pain.

Gonna be honest, I"m not always on the bandwagon of "pain is what the patient says it is". I have experienced so many patients who have tried to maniuplate me that it really zaps my spirit. To do everything you can for a patient, call a doc multiple times to try to get things changed only to be treated like a piece of garbage on the bottom of your shoe, can really make you question your career choice. I'm not saying I don't medicate patients who have pain meds ordered, because I do. But I get so tired of having to remind patients I can only give what the doctor orders...I can't spontaneously order pain medication myself.

I always try to be up front with my patients, tell them what they have available, what I can do for them. We have alternative therapies available at my hospital, like music therapy and recreational therapy. What's frustrating when I try to do things like heating pads, ice packs for patients, anything to try to help alleviate their pain..anything I can do without an order from a doc and patients aren't even willing to try, I must admit I feel defeated.

My mother suffered from chronic pain, I know how difficult it can be. I also understand how trying it is for the patient. But I wish patient's would realize I"m trying to help....but ultimately I can only do so much.

I guess my point, after all this rambling ( worked last night, haven't had much sleep) is: no matter the patient population, you are going to have challenges in your nursing career. Not all sickle cell patients are going to exhibit the behaviors you describe. It can be hard but try not to say to yourself , "oh not another manipulative patient". Try to go in with a helpful attitude tell the patient what you can and can't do for them and set limits. If their behavior is not appropriate, call them on it. Do what you can and let the rest fall by the wayside. And remember: when dealing with difficult patients, take care of yourself. Make sure you're getting plenty of rest, hydrate well and eat well. Educate yourself as much as possible, do all you can to try to improve your nursing care. You may find as your grow in your level of knowledge that your patient's responses may change. Some may realize you are doing your best to do all you can for them. Others who won't, you're not going to be able to change them.

Anyway, just a view from the trenches.

Specializes in LTC, Acute care.

I work on a medicine floor so we get sickle cell patients all the time. During report, I'd always be warned about the annoying patient in room X&Y and how demanding they are and how they don't show symptoms of pain and how they are oh so rude. My thing is I reserve my judgment until I actually meet the patient myself because it's better that way. Most times I've discovered that such patients end up not giving me trouble during the shift so when it's time for report I have nothing to complain about or label them with. The reason I think this is is because when I go into a patient's room and introduce myself, I make it a point to ask how they are doing and tell them how often their pain medication is scheduled (which they often already know) and that I'd try my best to bring it on time. I also make it a point to let them know that if it's 15 minutes late, it isn't because I've forgotten them but because I'm with another patient at the time. It has always worked for me.

As a young girl growing up, I lost a best friend to this disease so I don't take their complaints of pain lightly at all and they are always thankful when they have someone that understands them. What breaks my heart is when other caregivers judge these people and neglect to give ordered pain medications. I have had a patient break down in tears when I brought her pain medication immediately after she told me she was hurting. Her tears were because no ever took her serious when she asked for pain meds. It isn't fair at all to this population of people.:nurse:

i'm not a nurse yet but my aunt has sick cell and its so sad how bad she is treated by doctors and nurses ( she has one good doctor that knows a lot about sick cell and 2 nurse that understand her)

my aunt has had doctors say " give up the act or i know this room is nice but its time for u to go home"

nurse and doctor lable her as a drug seeker just because she not crying in pain mmm do they say that to cancer ppl

sick cell anemia ur born with it so over time u deal with the pain (dont show it ) my aunt could be in a 10 pain and still laugh or read a book

i wish more doctors and nurse would learn more about sick cell

p.s. my aunt is in a sick cell group and they have the same stories of being mistreated it makes me sick thats why i want to be a nurse i hope i can work with sick cell ppl

Just FYI, it's sickLE cell. Not sick cell.

At times like this I am amazed and impressed with the rallying of nurses rising to defend patients.Kudos:)

Sometimes,I do believe there is an element of over-watchfulness and sometimes "jadedness"in this and in trying to help the patient we cause the patient pain.

Please new grads and everyone else, FORM FORM YOUR OWN OPINIONS yourselves. Sure, you're given a report that patient A is an addict, sieve through the information given, don't just process it as being so.

But we learn as we go along, so there's hope. As a new grad, I was watchful, wanted to meet my patient's every need and fell prey to almost listening to the labels, the patient is an "Addict" etc. But the real truth lay in the fact, that some patients had a high pain tolerance level due to the chronic nature of their pain. \And just because the features do not go according to standards does not mean the patient was not in pain. Those standards were made by made, and everyone has a different pain tolerance level.

I learned to look at things from not my perspective but the patient's. Intuition is wise, caution is great. But don't in being too careful, cause unintentional pain to the person you are looking out for.

Specializes in Med/Surg.
I don't work with "Sicklers" much where I am currently living, but when I lived in N.C., there were the same 4 or 5 who would come into my local ER. Other than being very specific about the Dilaudid dosage and where to find a vein, they were great people. All of them. They were grateful and always understanding. Of course, their disease means pain for them, which will eventually lead down a path of narcotic abuse for most of them, unfortunately. What other option is there? They have pain. Microvasculature oxygen deprivation leads to pain, very real pain.

Just as there are other patients out there that are manipulative, lying, or rude, they exist within the person, not within the disease.

Bolding is mine.......my question is, why are these two traits specifically mentioned as the "exception" to the patients being great people? When they've dealt with chronic pain for so long, they know what works for them. If there are certain spots that are more successful for IV starts for them, should they NOT share it, to not risk being labeled? My sister is a generally healthy person, only goes to the ER for something once in a great while, is on no meds chronically. However, after her hysterectomy, she learned that Morphine simply does not work for her, but Dilaudid does. However, I know the look she would get if/when she mentions this. She has no problems with or history of drug use or abuse, she just learned from experience that Morphine doesn't work well for her. Nothing wrong with that. (I do, of course, realize that some patients DO seek for purposes other than pain, etc. I'm not naive...it's just not an *automatic* red flag).

Agree with the others that have talked about outward signs of pain. I do not suffer from sickle cell, but do live with two chronic, painful conditions, and have for over a decade now. You can't always tell by looking at me, how much pain I'm in (and the pain from one, I've seen compared to the bone pain that cancer patients suffer from...this isn't small potatoes). Have I been labeled and treated badly over the years because of all this? ABSOLUTELY, from docs (mostly the ones on call for my regular docs, and ER physicians), nurses, pharmacy staff, you name it. It's not fair.

Specializes in MDS RNAC, LTC, Psych, LTAC.

I have seen some prior posters state thinking the patient's pain is what they say it is not the right thing to do as far as addressing their pain? I think that is the nurse put her preceptions on someone else's body and what is going on inside it. The thing you bring up about manipulation is really not to me I have had many patients in all clinical areas I have worked think nurses can do more than we can as far as ordered pain medications or different ones for them than ordered. I explain to them what my role is in healthcare most people have no idea of a nurse's scope of practice. I tell them I will call the doc and then if he is not responsive to change med dose or timing I tell them they or the family can talk to him directly . That usually helps alot because they feel the have some power in changing their pain treatment.

To tell you the truth I have had people who I run into in a social setting parties, etc that when they find out I am a nurse they say wow bet you could get me some good drugs these are people are supposed to be upstanding citizens. :mad:I have never had a patient say that not even the people detoxing off abusing drugs... And that does make my blood boil as a nurse.

I have done many CEUs on pain and pain management myself but what I have learned over the years as a nurse is to listen to my patients and I do think it is what they say it is. I dont why in our culture in some ways some people think it is noble to suffer physical pain. It isn't and in post surgical patients inadequate treatment of pain delays healing. Geriatric age patients are totally undermedicated for pain. I guess I feel strongly about pain treatment because I lost my mom to lung cancer with mets to the brain and adrenals, and liver. All she ever needed was Darvocet ( it was still on the market then) and her oncologist said pain control even in the terminal pallative treatment stage is to alleviate pain which is where my mom was when diagnosed and I was in nursing school at time and her oncologist told me as a doctor that we as a society chronically undermedicate people for pain . He said it was one of the burdens of being an oncologist was patient and family and society resistance to alleviating pain. I have carried that focus with me and I know myself I can take pain well I had three children natural childbirth but that doesnt mean other women can tolerate the pain nor should they have to. I feel so strongly about this topic and should unsubscribe from it... Least it has helped me to realize I still feel some passion about nursing and people I take care of.

Specializes in Med/Surg.
I have seen some prior posters state thinking the patient's pain is what they say it is not the right thing to do as far as addressing their pain? I think that is the nurse put her preceptions on someone else's body and what is going on inside it. The thing you bring up about manipulation is really not to me I have had many patients in all clinical areas I have worked think nurses can do more than we can as far as ordered pain medications or different ones for them than ordered. I explain to them what my role is in healthcare most people have no idea of a nurse's scope of practice. I tell them I will call the doc and then if he is not responsive to change med dose or timing I tell them they or the family can talk to him directly . That usually helps alot because they feel the have some power in changing their pain treatment.

To tell you the truth I have had people who I run into in a social setting parties, etc that when they find out I am a nurse they say wow bet you could get me some good drugs these are people are supposed to be upstanding citizens. :mad:I have never had a patient say that not even the people detoxing off abusing drugs... And that does make my blood boil as a nurse.

I have done many CEUs on pain and pain management myself but what I have learned over the years as a nurse is to listen to my patients and I do think it is what they say it is. I dont why in our culture in some ways some people think it is noble to suffer physical pain. It isn't and in post surgical patients inadequate treatment of pain delays healing. Geriatric age patients are totally undermedicated for pain. I guess I feel strongly about pain treatment because I lost my mom to lung cancer with mets to the brain and adrenals, and liver. All she ever needed was Darvocet ( it was still on the market then) and her oncologist said pain control even in the terminal pallative treatment stage is to alleviate pain which is where my mom was when diagnosed and I was in nursing school at time and her oncologist told me as a doctor that we as a society chronically undermedicate people for pain . He said it was one of the burdens of being an oncologist was patient and family and society resistance to alleviating pain. I have carried that focus with me and I know myself I can take pain well I had three children natural childbirth but that doesnt mean other women can tolerate the pain nor should they have to. I feel so strongly about this topic and should unsubscribe from it... Least it has helped me to realize I still feel some passion about nursing and people I take care of.

I agree with your post.

I probably medicate my patients more and more regularly than my colleagues do....just based on all I've learned about pain management. I don't MAKE anybody take meds, but I strongly encourage it (I work with post-op patients). They can walk better, cough and deep breathe better, etc, if their pain is not controlled, and they often don't realize what a difference it will make if they take their pain meds. I am probably the biggest advocate I know, when it comes to pain management! It's OK to feel strongly about it, more people should! I'd take you as my nurse any day.

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