VENT - Sickle Cell Crisis patients

[abbaking]

This is a well needed vent. This is not to be taken out of context. I am simply trying to make a point. Although Sickle Cell Crisis (SCC) patients are mostly black, this is NOT a racial issue.

Here goes.

In my years working the bedside, I have cared for many a number of SCC patients. In those years I have noticed a common theme or behavioral profile so to speak of these patients. Most of these patients have had repeated hospitalizations from early childhood and become "institutionalized" in some ways when it comes time for re-admission to the facility. What is irritating to me as a professional, is the constant use and misuse of our medical facilities. I understand the remifications of this dreaded disease; However, if a patient so well versed in healthcare like SCC patients (and so many are), why the disregard and lack of involvement in there care?

Of the numerous SCC patients I have cared for in my career, I can only think of 2 that have participated actively in there care. Most of these patients are ordered O2 - Invariably when i do my rounds they have it off or simply refuse to wear the cannula. Many of these patients order vast amounts of food from dietary services, and yet, barely touch any of it - what a waste of food and hospital monies.

Perhaps the most pressing issue is Pain Management. Almost always, the pain level from these patients is 10/10. I am not doubting the existance of their pain, but after seeing first hand palliative care cancer patients in AGONY, I must say that i am skeptical that SCC patients' pain level is 10/10 all the time- everytime.

Maybe I am narrow minded and a bit to harsh on these poor individuals, But from what I have seen in my years working the bedside with SCC patients, MOST of the time - there seems to be a bit of manipulation and a power-play. Sadly, I think it is the patient with SCC who takes the chance and will lose.

This was a vent and Like I said in the begining, This is not a racial issue. I needed to vent this. Please dont come to the conclusion that I am oversteping my boundries or making unrealistic statements.

[Spiderella]

FYI: There is no blood test that can tell if someone is having a sickle cell crises. The lab work that is checked, is their H&H levels to see if we need a blood transfusion since we are usually anemic. Their Coags are checked to make sure they aren't about to throw clots. Another thing is the retic counts to see what percentage of blood cells are sickled, but this does not define a crises. You can't tell someone is in crises from lab work. So if someone comes to you in sickle cell crises, contesting this because of their 'labs' doesn't make sense and is not true.

To keep it simple, if someone tells you they are in pain...believe them.

[Spiderella]

A couple of nurses have already approached this from the nursing point of view, so I'm going to try a different angle. As a nurse with sickle cell anemia, I have the unique position of understanding the realities of both scenarios.

Sickle cell primarily affects those of African descent, Hispanics of Caribbean ancestry and is found in those with Middle Eastern, Indian, Latin American, Native American and Mediterranean heritage. Most of the Sickle cell patients in America are black, but I have met those with other ethnicities as well.

Think of the worst pain you have ever had in your life...perhaps childbirth, or when you broke something. Now multiply that pain by 100. Imagine someone pouring hot lava into your veins. How does that feel like? Imagine yourself being set on fire....how does that feel like? Imagine 1,000 men drilling holes into your bones. Imagine all these things going on at once, and you are cold, while an elephant is sitting on your chest. Okay...keep that image in your mind as you read the rest.

I detest going to the emergency room or getting admitted to the hospital for my disease. I will manage it at home as much as I can, but if I need to go to the hospital, it is because the pain is uncontrollable, and nothing in my orificenal works. I do go to my doctor's visits, and have a healthy grasp of my disease process, but I still have to go to the emergency room when in an acute pain crises. Most of the time, even if I go to my doctor's office, it is just a waste of time, because he will tell me to go to the ER.

So coming to the ER because one has a chronic condition is not a misuse of the medical facility. If a diabetic came in with a blood sugar of 45 or 545, would he be misusing the ER? After all, he understands his disease process and diabetes is a chronic condition, is it not? In my esteem, SCD patient coming to the ER with an acute flare-up of a chronic condition should get the same compassionate care as a diabetic coming to the ER with an out of wack blood sugar.

Cold is not good for sickle cell, it exacerbates the painful feeling. And ERs and hospitals are kept very, very cold.

Regarding using Oxygen...even I take off the nasal cannula after a few minutes. It's blowing cold dry air, into a body that is craving heat. I'm trying to stay huddled under this one warm blanket and get warm, but cold air is being pushed into my nose. I prefer a face mask, and have asked for one several times only to be told by the ER nurse that it requires an order from the physician, and I don't need it. And as much as I know that oxygen is good for me in a crises, it really does feel like a huge slimy booger at the tip of my nose. It drives me to distraction, and there is already too much on my plate, and so, I take it off.

I know what works for me because I have been dealing with this condition for 29 years. So knowing what medications, the doses, the regimen, this is all natural, because I have been doing this pretty much all my life. I know that Morphine depresses my breathing and doesn't touch my pain, I know that Dilaudid helps a little but will make me itch like crazy, I know that Fentanyl works only for 5 minutes, I know that Demerol turns me into a delirious, blathering fool and will make me throw up. Therefore, asking for specific medication and doses given in a specific manner, should not be a bad thing, because the patient has a history that only he is aware of. You might have access to his chart from the previous hospitalization, but do you have access to his chart for every admission or ER visit that he has had all his life? It's better to collaborate with the patient and come up with a plan together, this way, you don't have to wade through the whole 'trial and error' process that does not work and just leaves your patient waiting in more pain.

By the time I get moved to the inner sanctum of the ER, and get IV line is established (I'm a very, very hard stick), I have already been in excruciating pain for no less than 2-3 hours. With no relief, the pain keeps building and building until even the paltry first 2-3 doses of pain meds will not do anything to stem the tide. So you getting frustrated after giving me 2 doses, and my pain is still a 10, well this is partly because the pain has been raging uncontrollably for so long that small doses of IV anything isn't going to touch it.

Regarding food: it's a comfort thing. When you are sick, and someone brings you your favorite drink or snack, doesn't that comfort you on some small level? So therefore, me asking for Lorna Doones (my favorite cookies), or peanut butter toast and hot chocolate is not to be rude or to turn you into my personal waitress, it's because, food brings a level of comfort into a painful existence. And not eating the food when it is brought, it is not to waste food, it is because probably right then, I am in more pain, and can't really focus on anything but the pain at that point. Or I'm nauseated. Or...hospital food tastes like crap.

Regarding your point about pain scale, right now, my pain level is a 3. When I have a mini-crises, it's a 5. When I have a major crises it's a 8. When I have pain so bad that it's all encompassing, all over my body in a tidal wave of excruciating fire...that's a 10. And the 2mg of Dilaudid shot you gave me 15 minutes ago barely took it down to a breathable 9.5. My pain score is high not because I'm a drug addict or want pain meds, it's because I'm in an acute pain crises, and at that moment, the pain is really, really, really bad. But the other nurses are right, pain is very subjective. So if the patient states their pain is a 10, treat it like it's a 10. Why does it bother you so? Are you paying for the medication or their medical bills?

A person with chronic pain might not have the same posturing that you expect with a 10/10 pain. With my 10/10 pain, I can't do anything, I don't even want to talk, I just want to cry, curl into a fetal position and pray for a quick, merciful death. However, my sister at a 10, watches TV to distract herself and keep her mind off the pain. At a 9 she can even talk on the phone. And when my parents or family call me on the phone, at a 9/10, I talk and act as 'normal' as possible because I don't want them to be worried. How one deals with pain is should not be the yardstick for the pain scale or your decision to administer or with-hold meds.

Regarding the power play issue you mentioned, there is a huge power-play between the patient and the nurse. The nurse feels like she knows everything and can pretty much decide how miserable she will let her patient be, while the SCD patient who has been dealing with this condition all her life is thrust in the role of the supplicant, begging for water, help to get to the bathroom, pain meds etc..

You also have to bear in mind that many SCD patients have had negative and bad experiences with medical professionals pretty much all their lives. Having experienced painful crises and several hospitalizations, I can tell firsthand the negative attitude that health-care practitioners exhibit towards sickle cell patients. It is common for SCD patients to be labeled as malingerers, manipulators, or even defined as drug seekers by nurses and physicians. So the patient is coming to you with BAGGAGE from all these previous hospitalizations. And you have BAGGAGE from all the hordes of frequent flyers you have taken care of. It's like a toxic relationship, no trust, but tons of baggage on both sides.

SCD patients frequently report dissatisfaction with care they receive, which is often related to inadequate pain relief (Dorsey & Murdaugh, p. 45). Inadequate pain relief results in a poor quality of life, passivity and aggressiveness when dealing with care providers and heightened distrust between SCD patients and their providers (Strickland et al., p. 37).

I have had a nurse tell me, "Don't expect all your pain to go away." I have been discharged in pain and had to crawl through the ER to the waiting room on my hands and knees, while nurses looked on. I have had to wait for hours for someone to help me to the bathroom, and it was the woman who came to mop the floor of my room, that walked me to the bathroom. I have had a doctor tell me "shut up, you don't know anything." I have had a nurse say to me, "Why are you crying, you should be used to this by now." These are just my stories...and I am a nurse myself, and have been exclusively only to the ERs of the Hospitals where I have worked in. So I imagine that your patients are coming to you with the same history---or worse.

So I come to you, with all this baggage, in pain, and I'm asking you to help me.

What you do, well....that's all on you, but realize that as a nurse, you are supposed to help people...and not harm them.

[leslie :-D]

spideralla, your insight and experiences about scd, should be made a sticky.

you totally rock.

leslie

[caroladybelle, BSN, RN]

I feel that comments like this are judgemental regarding sickle cell patients. Sickle cell anemia is a chronic and potentially debilitating disease that causes unrelenting pain to patients who suffer from it. As a nurse, you should be educated about the disease process of sickle cell anemia and the effects it has on patients who suffer from this chronic disease. Since this disease is chronic, of course some patients who suffer from sickle cell are hospitalized frequently. These patients require higher doses of pain meds because of long-term use of pain meds over their lifetime as a result of the excruciating pain that is experienced. As with any chronic illness, there will be patients who comply and those who don't. As nurses it is our job to manage their pain and not assume that they are pretending and trying to "use the system".

We do not necessarily "assume" they are using the system. But there is a group of chronically ill pts that do abuse the system, and all the education in the world for the nurse and the pt is not going to change that, for those that find it easier to be "sick.

I was treated and resected for colon ca in my late teens. What was left of my lower GI tract, got hit with ulcerative colitis several years later. Then the autoimmune issues, with disease attacking joints and other organ groups followed quickly. Life can be very painful.

There are ways of preventing some of the attacks,pain and flareups. They involve living a regimented lifestyle, forgoing some activities, dietary changes, etc. These are not "fun" restrictions, and they interfere with a lot of "normal" activities. But if I want to stay healthy, not miss work too often, and not be in severe pain, I know that I have to live this way.

I know plenty of other pts with the same or even less extensive disease that are on major narc, disability and regularly hospitalized. And I visit them, and they are not restricting their diets, they are doing things that actively make the disease worse and flare up. I recently had an acquaintance that thought weight loss was more important than health and took an over the counter med "SPECIFICALLY CONTRAINDICATED" for IBD pts - she ended up in the hospital, just to do the same thing again. And breaking her diet restrictions while there.

Staying healthy with a chronic disease is not an easy thing, and can be very trying and isolating because of the restrictions. It is much "easier" to live like everyone else without those conditions, and at times, easier to be sick. People take care of you and you are special.

Much like watching the pancreatitis pt that refuses to stop drinking alcohol, or talks family in to sneaking in food, when they are NPO, and then complaining about the pain that results from eating, these pts do ride the system, for whatever reason. And I support the OP in his/her need to vent about it.

[xobay]

Even though I'm responding to the last comment here (only b/c the comment button wouldn't work for me for some reason) AND this thread is old, I have to say that many of the comments are the exact reason I'm headed to nursing school. Feelings haven't ever been facts, and I have witnessed SCD patients get HORRIBLE treatment from medical professionals. There's always a lot of assuming that happens when it comes to SCD. Yes, some people with a chronic illness can be labeled seekers, but to automatically do that to everyone is unfair. And it happens SO much with SCD patients.

[BlinkyPinky]

Yep not at all surprised

[Ashley_SF, BSN]

I know this thread is old, but it's such an important topic. It was my understanding that my job, as a nurse, is to support and advocate for the patient. Regardless of whether someone's pain is "real" or they're a "drug seeker", it is my job to be supportive.

It is not my job to tell the patient that they're lying, abusing the system, being manipulative or faking their symptoms. As healthcare providers it can be so draining and disheartening to feel like our best efforts are ineffective. It can be challenging to see the same people over and over again for the same reasons. It can be frustrating to see people engaging in behaviors that worsen or prolong their symptoms.

But, it's not helpful to blame and shame our patients. Not everyone has the capacity to follow all best practices for their disease management to a "t".

I've had patients that make me want to pull my hair out. They're "demanding" and seemingly never satisfied. But, it's my duty to take a step back and evaluate where I am, where they are and to make a plan together that best meets their needs.

Sometimes when we're reacting to our patient's situation it has more to do with us than it does with them. We feel like failures, we've run out of tricks. We do our patients a disservice when we let our judgments and expectations about their recovery to impede our ability to deliver the care that they deserve.