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?

[heron, ASN, RN]

By PD do you mean peritoneal dialysis? If so, she must have pretty advanced disease. And she's "pretty smart". That means she's been been living with a fatal disease since birth, is now dealing with a level of damage that requires dialysis and a quality of life that is unlikely to improve, ever.

No, it's not ok to abuse caregivers and "wreak havoc" whenever she is admitted.

It's also not ok to blow her off as just basically bad when it's very likely that, over her lifetime, the hospital and its employees have taught her that this is the most efficient way to get her needs met. I know you wrote that she's been treated with the same respect other patients - but I don't believe it.

That being said, you can't control her behavior, you can only control how you respond to it. Steer clear of staff splitting, set reasonable limits, do what you say you are going to do and don't make promises your time and patient load won't let you keep.

The psych nurses among us might have some good advice on how to work with her highly dysfunctional behaviors as well as your totally normal reactions to it.

[Natkat, BSN, MSN, RN]

Believe it or don't. She's the most difficult patient I've eve dealt with. And I think it's dysfunctional to have to be nice to people who abuse us. Even worse is to blame us for their abuse. It's like telling a rape victim that she was asking for it. Give me a break. And yes - PD is peritoneal dialysis.

I have always thought she has BPD. In fact she was telling me about a family member with schizophrenia and another that is extremely paranoid. So I would guess there is a element of mental illness there.

[heron, ASN, RN]

Which means that the professional psych practitioners here ought to be able to offer some insight on dealing effectively with her behaviors. Have you tried sharing your situation on the psych nursing forum?

[Sramos89]

My name is Stephanie and I had s.c for 25 years til I had a successful bone marrow transplant..now it sucks to hear what u delt with but the only thing I can say on the matter is you are going to deal with good n bad ppl just like u would with any situation.. experiencing episode is like Feeling ur body ripped apart..stab 100times n I could admit at times I use to have anger during these episodes n my mother allowed herself to be the puching bag during these out burst n yes at times I became rude but for me personally it only happened when I was really bad..all I can say is educated urself on the matter as much as possible n try to be understandable with them but yes if it becomes too far u do not have to take the bull crap but forgive them n pls try not to put one single lable or view on every patient of s c pls because I've seen it happen n it sucks so bad Especially the majority of people with s.c are good people who want to be healthy n happy..but continue to educate urself n being a awesome nurse..

[Hail2Pitt]

This post really is so sad, I work in an ED as a PCT. I'm always impressed with the level of care the Attendings provide to people labeled as "seekers" because many of the nurses want to just get them out ASAP, but the attednings take their time to ensure their health and stability before sending them on their way or admitting them.

[hppygr8ful, ASN, RN, EMT-I]

Ok ladies and gents and children of all ages. Gather round it's story time. Some of you know this about me but as a qualification I am a chronic pain sufferer as well as an alcoholic in recovery and sober since 2004. I have 3 different auto immune disorders and have experienced first hand the disdain by some nurses who think I couldn't possibly be in pain because I can watch TV and eat a bowl of ice cream.

I had a patient a few years ago who had chronic pain and long term depression (the two often go hand in hand ) She had attempted suicide and landed in my psych ward. She was a clock watcher for sure. I had several conversations with her about her illness, pain and depression I never treated her with anything but kindness and believe me she could be mean as a wet cat when her pain got bad she felt the nurses and staff weren't hearing her. She told me that she really wanted to get of opiate pain medication but was afraid. I got her a referral with a rehab specialist and by the time she left the hospital we had successfully detoxed her and taught her some new pain management skills. She went to rehab did well there and as we live in small community I saw her on occasion but never has reason to say more than hi. One day I saw her WALKING without her wheelchair and I had to tell her how great she looked. I also asked her what had changed to bring about this transformation. She smiled and said "You were kind to me" . That is why I don't make judgements about my patients and also why I stay in the profession.

Hppy

[SkyPirate42]

I have Sickle Cell Disease and I always dread being in the hospital because of the amount of judgement I face. Also, due to being a person of color and transgender, it's more likely that my pain will be undermedicated and that I will be misgendered and made fun of for being trans and I could tell you some real horror stories.

I've spent my whole life in an out of hospitals so naturally you learn things like how to use the IV pump. I always lower the volume because I'm autistic and have hypersensitive hearing and the alarm causes me more pain. Secondly, when I'm admitted, I ask the nurse to write the times of my next dose for all of my meds and I set an alarm for my pain meds. Not because I'm an addict, but because the meds need to build up in my system to make my pain controllable. If they wear off completely, it's back to square one.

Personally I try to be as kind as possible to my nurses but I know I've had my moments but the thing to remember is that stress makes crises worse so kindness is key, being curt or nasty is going to make things worse for both of us. Being tucked in or remembering what kind of juice I like does a lot when I'm in pain.

Sometimes it may seem like I'm not in pain but that's because I have to tell you something so I'm using my superpower to tolerate pain long enough to communicate what I need and what's wrong to you and the doctors. Afterward I curl up in a ball and cry.

My tolerance of pain meds is so high I no longer get high and there have been times when I've had tears running down my face but the nurse refused to ask the doctor if I could have another dose because she thought that I had enough pain medication and that I was getting too much. I've had nurses refuse to administer medication because they didn't think I was in enough pain or thought I was lying. I was once forced to wait six hours for pain medication despite being unable to bear weight on my legs due to pain. I was crying and someone told me to shut up and when I revealed that I was trans, the ER nurses made fun of me right outside the curtain and the doctor ordered a psych eval. I was discharged still in severe pain and barely able to walk. The doctor told me not to come back and I was written off as drug seeking.

I was forced to travel over an hour to the hospital where I saw my hematologist. I was admitted but it took so long to make my pain controllable that I suffered major muscle damage. I was out of work for months and had to relearn how to walk.

Since Sickle Cell is such a rare disease, we're taught everything there is to know because we often have to advocate for ourselves due to lack of knowledge. We're taught where our veins are and eventually we need ports because our access decreases over time. We're taught what doses of which meds we need to control our pain because of the effect that opioid tolerance has, we need more than the standard dose and it differs between each person. Having to play advocate while in extreme pain would be draining on even the strongest person so please excuse those of us who get nasty. Especially since most of us are afraid of being judged and written off as drug seeking so we're afraid to show any weakness that might cause someone to do that. Also, this disease doesn't have the same impact on each person that has it. It presents differently in everyone and has a different impact on each person.

Because of the opioid epidemic and the stigma around narcotics, it's easy to write us off as drug seekers but as a nurse, you have to put that aside because we're still people in need of medical help and in pain.

[SkyPirate42]

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!

Some of your facts are wrong. Mainly that people with Sickle Cell aren't in chronic pain. That primarily depends on the person. Sickle Cell can cause avascular necrosis which leads to chronic pain and some people are in crisis constantly or often enough to be considered chronic. Also because crises can be triggered by a variety of factors that vary from person to person some people are triggered more easily than others. Also it is possible to be in crisis and feel that pain which is a very specific feeling, and have it not show up on labs. It's happened to me and has happened more often since my hemoglobin is artificially boosted by testosterone.

[xobay]

"Rants" like these are exactly the reason I want to get into nursing. Lots of assuming done when it comes to SCD patients and going into every situation with a preconceived notion is completely unfair to them. My sister has SCD and has suffered from it since she was 2. It wasn't until I witnessed the treatment from medical staff myself that I knew I had to go from the outside IN to help these people. So sad.

[FolksBtrippin, BSN, RN]

I have Sickle Cell Disease and I always dread being in the hospital because of the amount of judgement I face. Also, due to being a person of color and transgender, it's more likely that my pain will be undermedicated and that I will be misgendered and made fun of for being trans and I could tell you some real horror stories.

I've spent my whole life in an out of hospitals so naturally you learn things like how to use the IV pump. I always lower the volume because I'm autistic and have hypersensitive hearing and the alarm causes me more pain. Secondly, when I'm admitted, I ask the nurse to write the times of my next dose for all of my meds and I set an alarm for my pain meds. Not because I'm an addict, but because the meds need to build up in my system to make my pain controllable. If they wear off completely, it's back to square one.

Personally I try to be as kind as possible to my nurses but I know I've had my moments but the thing to remember is that stress makes crises worse so kindness is key, being curt or nasty is going to make things worse for both of us. Being tucked in or remembering what kind of juice I like does a lot when I'm in pain.

Sometimes it may seem like I'm not in pain but that's because I have to tell you something so I'm using my superpower to tolerate pain long enough to communicate what I need and what's wrong to you and the doctors. Afterward I curl up in a ball and cry.

My tolerance of pain meds is so high I no longer get high and there have been times when I've had tears running down my face but the nurse refused to ask the doctor if I could have another dose because she thought that I had enough pain medication and that I was getting too much. I've had nurses refuse to administer medication because they didn't think I was in enough pain or thought I was lying. I was once forced to wait six hours for pain medication despite being unable to bear weight on my legs due to pain. I was crying and someone told me to shut up and when I revealed that I was trans, the ER nurses made fun of me right outside the curtain and the doctor ordered a psych eval. I was discharged still in severe pain and barely able to walk. The doctor told me not to come back and I was written off as drug seeking.

I was forced to travel over an hour to the hospital where I saw my hematologist. I was admitted but it took so long to make my pain controllable that I suffered major muscle damage. I was out of work for months and had to relearn how to walk.

Since Sickle Cell is such a rare disease, we're taught everything there is to know because we often have to advocate for ourselves due to lack of knowledge. We're taught where our veins are and eventually we need ports because our access decreases over time. We're taught what doses of which meds we need to control our pain because of the effect that opioid tolerance has, we need more than the standard dose and it differs between each person. Having to play advocate while in extreme pain would be draining on even the strongest person so please excuse those of us who get nasty. Especially since most of us are afraid of being judged and written off as drug seeking so we're afraid to show any weakness that might cause someone to do that. Also, this disease doesn't have the same impact on each person that has it. It presents differently in everyone and has a different impact on each person.

Because of the opioid epidemic and the stigma around narcotics, it's easy to write us off as drug seekers but as a nurse, you have to put that aside because we're still people in need of medical help and in pain.

I'm so very, very sorry for how you have been treated.

[elephantlover, BSN, RN]

On 2/2/2011 at 3:42 PM, joyouter said:

Thanks for this, Your observations are very accurate. The pattern you described is the pattern of chronicity, both from a) the disease and complications and b) the negative effects of pain management which at present, has a greater success rate using narcotics, and consequently, the pattern of secondary effects. Pain is a powerful phenomena and has been described as " leaving a memory in the spinal cord, or perhaps, the subconscious. Neurological pain is similar, and nurses are often at a loss to understand if the patient is describing actual physical pain or the pain memory embedded in the neurological system. The approach is to recognize and honour the patient as they describe their pain and treat it as such. The overall approach is to respect and treat what the patient describes which is often why nurses become frustrated and angry when we might interpret this as treating a "habit" rather than an entrenched memory of pain, which to the patient remains real. There remains so much research and work about pain, effects from Sickle Cell and nursing knowledge and practice. :heartbeat Just a thought.

I have really enjoyed your posts in this discussion. Excellent food for thought. Thank you. I hope I never stop honoring patients as you describe. What do you do when you are running out of options to manage the patient's pain? Do you contact the provider to discuss something for breakthrough pain? What if they have poor renal function or their RAAS score is low, but the patient is reporting moderate to severe pain? Beyond environmental and alternative interventions, how do you have that discussion with your patient when their next available pain med is hours away? I feel that I will struggle with this as a new nurse.

[elephantlover, BSN, RN]

On 8/23/2017 at 2:52 PM, hppygr8ful said:

Ok ladies and gents and children of all ages. Gather round it's story time. Some of you know this about me but as a qualification I am a chronic pain sufferer as well as an alcoholic in recovery and sober since 2004. I have 3 different auto immune disorders and have experienced first hand the disdain by some nurses who think I couldn't possibly be in pain because I can watch TV and eat a bowl of ice cream.

I had a patient a few years ago who had chronic pain and long term depression (the two often go hand in hand ) She had attempted suicide and landed in my psych ward. She was a clock watcher for sure. I had several conversations with her about her illness, pain and depression I never treated her with anything but kindness and believe me she could be mean as a wet cat when her pain got bad she felt the nurses and staff weren't hearing her. She told me that she really wanted to get of opiate pain medication but was afraid. I got her a referral with a rehab specialist and by the time she left the hospital we had successfully detoxed her and taught her some new pain management skills. She went to rehab did well there and as we live in small community I saw her on occasion but never has reason to say more than hi. One day I saw her WALKING without her wheelchair and I had to tell her how great she looked. I also asked her what had changed to bring about this transformation. She smiled and said "You were kind to me" . That is why I don't make judgements about my patients and also why I stay in the profession.

Hppy

Love this story. Thank you for sharing your personal experience. Vulnerability and kindness are brave and beautiful. Nursing has really challenged me to withhold judgment- it is an ongoing process.