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 don't have sickle cell disease but I did want to say I have chronic pain. I can have significant pain but still be calm, talkative, watch TV, etc. I suggest earning CEUs in pain management. I believe this might help your practice greatly.

Specializes in ICU, APHERESIS, IV THERAPY, ONCOLOGY, BC.

With emphasis on your question regarding pain management and the epidemiological picture of pediatric Sickle Cell disease and management. the following link should be of interest.

http

://www.ncbi.nlm.nih.gov/pubmed/12662119

Specializes in Hospice.

Please note that this thread was started in 2011. I suspect the OP and many participants have moved on.

People with sickle cell have been sick and in pain their entire lives. I think some of them get a bit 'institutionalized'. I think some of them 'regress' emotionally, too. They've been in the hospital in terrible pain ever since they can remember, waiting for nurses to meet their needs while their friends played outside and had regular little kid lives.

One thing I noticed was the sickle cell patients were quite NORMAL, mature, all that stuff, except when they were in the hospital. And then all their stress and depression and resentment from being sick and in pain their whole lives just comes flooding out, as if they hold healthcare itself 'responsible'.

Being exposed to all those narcotics from a young age can't be good for a person's emotional and mental health, either. And they do have enormous tolerance to opioids, and probably have to fight every admission to get adequate pain control, endure doctors and nurses that think they are drug seeking (the pain is horrible, but there is no cancer, no big gaping wound, it's rather invisible :( ).

I can see why some sickle cell folks just don't even TRY to behave themselves. Put yourself in their place. If you have a few minutes, see if you can get your patient to talk about what their life has been like dealing with sickle cell. People with chronic 'invisible' pain put up with more than we can understand. It's no excuse for bad behavior, don't get me wrong. It does help when you understand their bad behavior, so you don't take it personally, or develop a 'disease grudge' (oh no, not another sickle cell!!). Good luck!

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

I am tired of hearing that kind of excuse for pts.

I also have chronic unrelieved pain, as do many other people who can still be nice to others. Pain/illness is no excuse for being a jerk, imo.

1 Votes
Specializes in Hospice.

There's a distinct difference between an excuse and an explanation. Perhaps if people in SS crisis didn't have to battle with the pain police at the same time they're coping with MI-intensity pain, they might have the energy to function like civilized humans.

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I first came to know about the struggles of people with SS back in the early seventies when they seldom lived past their early 20's. The lady was 35yo, maintained at home on dilauded 8 mg q4hr. When she was admitted to my unit in crisis, she was given Demerol 50mg q6hr. Couldn't get the MD to budge on the order. Her reason? She wanted to prevent addiction. I could hear my pt screaming from the sidewalk outside.

People with SS are human and will get what they need any way they can. If behaving like a jerk is what it takes, then that's what they'll do.

I took care of a SC patient last week. The poor patient was in severe pain constantly. The physician ordered dilaudid-PCA pump. The dose was not effective. The doctor increased it. The new dose was still not effective. The doctor increased it again and again and again until the pain was under control. The patient is 1 year older than I am. It was really sad. I admired and respected that doctor so much because he took the patient's pain seriously.

Specializes in Hospice.

What the heck ... it's a zombie thread so I'm not going to worry about whether this post is a hijack or not.

I found this article pretty interesting because it suggests some possible causes for the behaviors that drain us the most. I happen to agree that being ill does not confer the right to be abusive. But it's a two way street and we're supposed to be the professionals in the situation. There is no excuse for some of the providers' behavior described here. This is a very short article in Mother Jones:

One Disease Hits Mostly People of Color. One Mostly Whites. Which One Gets Billions In Funding? | Mother Jones

One Disease Hits Mostly People of Color. One Mostly Whites. Which One Gets Billions In Funding?

February 12, 2009, was supposed to be a big day for Carlton Haywood Jr.: The newly minted Johns Hopkins professor was set to travel from Baltimore to New York City to make a presentation at an important medical meeting. But the night before he left, a searing pain started to surge through his arms and soon spread to his legs. The next morning, when he boarded the train, his whole body felt like it was on fire. By the time he reached Penn Station, he could barely make it to the emergency room.

The pain was caused by Haywood's sickle-cell disease, a genetic condition in which misshapen red blood cells build up in the blood vessels and cause infections, strokes, and excruciating episodes of pain. Having lived with sickle cell for 39 years and studied it as a bioethicist, Haywood knew the treatment he needed to stop the episode, so he requested a specific combination of medications. The hematologist, however, refused, implying that Haywood didn't know what he was talking about. Haywood wound up missing the meeting—and was in the hospital for a week.

For the 100,000 Americans with sickle cell—it's the most common life-shortening genetic disease in the United States—insults like that are routine. "We know what works best for us and what does not work so well for us," Haywood says. "But doctors often don't listen." His research has found that when sickle-cell patients ask for medication—especially opioids to control their pain—they are routinely dismissed as pill seekers, even though they are no more likely to be addicted to painkillers than the general population. Sickle-cell patients in acute pain also face longer ER waits than other patients in acute pain.

Bolded italics added.

The article goes on from there to discuss, very briefly, funding for cystic fibrosis research and contrasts it with funding for sickle cell. The article then asks this question:

... But if patients with big bucks bankroll research for their own conditions, Strouse wonders, then who will support the likes of sickle-cell disease? Poor parents, he notes, have fewer opportunities to be "out there raising awareness and buzz about your kid's disease. You're struggling just to get by, just to get your child to the doctor's office while holding down your job."
Specializes in ER, Med Surg, Ob/Gyn, Clinical teaching.

IMO, I think the reason why most are addicts is because of the continuous pain that they experience all the time..

I have had a couple and they were drug addicts but never rude to me... and one that I had a few weeks ago , shes in her 20's, she did say she had to take drugs to help her deal with the continuous pain she always has...

Please tell me what test there is to check for an active crisis.

It's because children with Sickle Cell are taking more serious than adults because they are not perceived as drug seekers. This came straight from both my children's hematologist, as well as our regional Sickle Cell Social Worker. They see a child in pain and they see pity, they see an adult in pain and they see a drug seeker. These children are often directly admitted to the hospital if it is after office hours, no emergency room necessary. However, at 17 they are bumped to an adult hemotologist and therefore they visit a regular hospital and not a children's hospital.

When I worked on an oncology floor we had a few frequent flyer sickle cell patients who would be admitted to our floor (probably because we regularly used PCAs and strong prn pain meds). They were usually nice from what I can remember although I'd like to think it's because we did a good job managing their pain :) don't be quick to label someone drug seeking if they have an illness. I found oncologic pain harder to manage at times... Some of those patients were in so much physical and emotional pain it seemed no amount of medication or TLC could help. Sometimes bringing pain from 10 down to 5 at the end of my shift would be the only small victory we'd accomplish. You can't control what their pain is when you come on shift, but you can try to leave them better than they started.

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