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.

[leslie :-D]

nah, i don't sense anything racial.

nor have i cared for a bunch of scc pts, but the few i have cared for, were in acute crisis.

and it was painful (as ischemia is).

as for the pain levels, i've had pts tell me they depend on their pain meds, even if to stay ahead of it.

they dread the pain they've been experiencing, so they want all the meds they can get, to avoid this.

here's to better days ahead for you.

leslie

[PostOpPrincess, BSN, RN]

I think you're just looking at things subjectively from your own personal experience. Pain is what they say it is.

I had someone in pain last week 10/10 and he was smiling, but when I touched the bed he screamed out in pain.

Another one who was 2/10 but acted 100/10.

I see all sorts of pain. I fix the pain. I cannot fix the "other" issues.

That's the way I see it so that I don't get disillusioned.

[kcochrane]

As someone with killer migraines for years, I can tell you that you learn to survive with the pain. Years ago when I had them, they did not have the effective meds they do today. So I learned to smile, while I was dying inside from pain. I would assume those with sickle cell probably are in the same category as those with chronic pain. It is hard to tell with VS and emotions just how much pain they are in. From what I understand, their pain can never be totally eliminated when they are in a crisis.

As far a non compliant patients..they come in every diagnosis. My philosphy is to try and do the best for them when I have them and hopefully get some info through to them.

[Sonjailana]

OP- Do you think we help this behavior along as a system? Learned helplessness?

[RNMeg]

A few of my classmates had similar pain issues during their preceptorships in ortho. The patients were constantly in 10/10 pain, every time they were assessed, regardless of when they got their last dose of meds. After some education on how the pain scale works, though, things got better. I think sometimes the patients were afraid that if they said their pain was less than 10, they wouldn't get medicated for it.

[classicdame, MSN, EdD]

consider that anyone with a chronic disease who, as you pointed out, becomes somewhat institutionalized, will try to manipulate their environment. It may be the only time in their life that someone even pretends to care about them.

As for pain, the 0-10 scale is really asking the patient to evaluate their current pain versus whatever they remember as the worst pain ever felt. Their memory and yours may not be the same. Another thing, they may be concerned that only the higher numbers get treated. Something we can educate patients on to a degree. But I agree with you about how hard it is to take care of non-compliant patients. When I worked pedi in an inner city hospital it was SC patients. Now it is COPD (also lack of oxygen) and diabetics. All chronic patients can be a challenge.

[EmBeMap]

Umm I understood from class that sickle cell was a genetic disorder only affecting african americans. that being said any disease that causes sickle shaped rbcs to lodge in the millions of capillaries all over your body making your body feel like its on fire is a pretty scary thing. usually our docs prescribed heavy pain meds as well as anti anxiety meds like valium. when you treat the anxiety associated with the pain most people report less pain with less pain meds administered. keep in mind that because they have been on pain meds for many years at high dosages the use of pain meds and anti anxiety meds usually has very few ill effects.

[WalkieTalkie, RN]

Our hospital started getting case managers involved with our sickle cell frequent flyers. When I worked in the ER, I knew a few of their routines well enough to know exactly how many saltines, one wanted with her Sprite, Dilaudid, and Benadryl.

Case managers and hem/onc docs worked together to get care plans for these patients and they were allowed only so many pain meds, etc, if they did not actually prevent in an acute crisis. It helped get them out of the department a lot faster.

I do feel your pain when it comes to managing these patients. In essence, a lot of them have been taught since children on how to use the system.

[sunnycalifRN]

Our hospital started getting case managers involved with our sickle cell frequent flyers. When I worked in the ER, I knew a few of their routines well enough to know exactly how many saltines, one wanted with her Sprite, Dilaudid, and Benadryl.

Case managers and hem/onc docs worked together to get care plans for these patients and they were allowed only so many pain meds, etc, if they did not actually prevent in an acute crisis. It helped get them out of the department a lot faster.

I do feel your pain when it comes to managing these patients. In essence, a lot of them have been taught since children on how to use the system.

I've dealt with sickle cell crisis patients, too. I don't see them any differently than any chronic disease patient. I've also taken care of cystic fibrosis patients, COPD'ers, and MS patients . . . all of whom were "frequent flyers". I don't see them as manipulating the system . . . it's just that their diseases put them into the hospital often and they're very familiar with their treatment regimens and yes, they can be demanding at times. I know that they'd give anything to be free of their disease.

[trixie333, ASN]

I've read your post several times; I think you are ready to pursue your masters. You will answer all the points you brought up and be a wonderful mentor to the bedside nurses that follow. (Just my humble opinion, as I only have an AD).

Pts. who don't get involved in their care and have disregard are exhibiting hopelessness....no cure for SC disease.

Your job is to deliver hydration, O2, food, and medication to the bedside within safe limits based on a scientific background. What is your role? Can you do it with a smile? Dr. Phil says 80% of our communication is non-verbal...; do pt's. feel your frustration at the bedside? It's OK to nag them, (lovingly, of course), "Wear your oxygen, a little is better than none", "Drink your milk, you need the protein", "We do what the Dr. says so you can go home feeling better". And to teach, they need to know they can feel better, push them along the health-wellness continuum. A little hope is better than none.

As for the food, this is something I've seen many times. Most of these pts. don't have the appetite to eat everything, and most don't have the finances to buy what they want at the store. The hospital presents a smorgasbord to their eyes. Like a child in a candy store, they want to taste everything. I saw this with my own mother, who was sick for many years. My thinking (how I came to grips ethically): we live in a rich country, food is cheap and plentiful, it is a small indulgence that does not deplete our resources.....

"Maybe I'm narrow-minded and a bit harsh"..... No, you are experiencing growing pains...you are ready to study and apply the abstract concepts of health and wellness, develop a philosophy of nursing and somehow bring it all back to us at the bedside. This will cure your frustration....with chronic illness behaviors, medical institution behaviors, inadequate medical interventions, etc.

[hardygirl, LPN, RN]

Our hospital started getting case managers involved with our sickle cell frequent flyers. When I worked in the ER, I knew a few of their routines well enough to know exactly how many saltines, one wanted with her Sprite, Dilaudid, and Benadryl.

Case managers and hem/onc docs worked together to get care plans for these patients and they were allowed only so many pain meds, etc, if they did not actually prevent in an acute crisis. It helped get them out of the department a lot faster.

I do feel your pain when it comes to managing these patients. In essence, a lot of them have been taught since children on how to use the system.

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".