12 tips for caring for patients with uncommon conditions

Shutterstock | sfam_photo
Shutterstock | sfam_photo

One in 10 people are affected by a rare disease. Seven thousand different rare diseases exist. Ninety-five percent of these illnesses have no known treatments. So we hate to be the bearer of bad news, nurses, but here goes….

No matter how much you study during nursing school or how much time you dedicate to continuing to learn, once you don the proverbial nursing cap, there will still be about a gazillion things you don’t know about conditions of the human body. For every 10 patients you see, there will be a patient who will be a complete mystery and unlike any other patient you’ve had.

So what now? How do you treat patients who are deemed “untreatable”? What can you do as a nurse to ensure their care and comfort? Where can you go for resources? We turned to the nurses on the Men in Nursing Facebook page for some tips on treating patients with rare conditions, and here’s the advice they shared:

1. “Ask your patient questions… Interview docs who have experience in treating chronic illness.” —Raine M.

2. “Ask your team their thoughts.” —Shannon S.

3. “Learn as much as you can. Talk to your patients!” —Timothy B.

4. “Read up and talk with the patient and their family.” —Steve A.

5. “Don’t treat the person like some odd creature. Just be professional, caring and informative. Joke with them, if they are up to it. I have found that patients know more about what is going on than we think. Families, on the other hand, are clueless most of the time.” —Bruce B.

6. “Let Google be your friend!” —Duncan M.

7. “Communicate!” —O’Neil J.

8. “Talk to your patient. You’ll never find a better source of information. And again, I say treat every patient like they’re the only patient you have. It’s served me well for over 40 years.” —Bill M.

9. “Open stance, mind and heart.” —Donald W.

10. “Questions, questions, questions; read consult notes to scan for S/S, causation for disease process and skilled assessment for these particular processes. Labs regarding disease process.” —James H.

11. “Don’t make them feel like you are skeptical. Nobody knows everything out there in the medical field.” —Christopher G.

12. “Try to connect and as always document, document, document.” —Scott D.

It would appear that communicating with your patient and their healthcare team is the common thread in the confusing web that is rare disease care. Have you had a professional (or personal) experience with a rare health condition? Feel free to share your patient care advice in a comment below!

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2 Responses to 12 tips for caring for patients with uncommon conditions

  1. greywulf

    Never forget that you are part of a team of caregivers with different areas of expertise. If you don’t make use of what is available to you from Docs, xray techs, PTs, OTs, lab techs, Pharmacists, and other nurses, you are effectively tying one hand behind your back.

  2. Melissa Sax

    Please please take.this article seriously. I’m an fnp with mitochondrial myopathy not completely characterized. We know I make lactate when I have metabolic stress but the part of the atp cycle where I go wrong remains a mystery my body learned to compensate with a persistant mild respiratory alkalosis to keep my phone up…my kidneys renal tubules stopped reabsorbing many items to try to help me clear the acid. I know what works what is happening and why. I get so frustrated with rns who act like I can’t possibly have a disease like that or don’t advocate for me when I tell them something is wrong and a lab needs to be drawn or fluids changed. I usually have to demand to see the doc who I’ve found more and more are receptive to me and what I know works for me….but one of the nurses have not been as receptive and sometimes can be a barrier to me getting better because they see the changes or I tell them something is off and they just think I’m a hypochondriac.

    Never underestimate the human bodies ability to compensate. I look fine on the outside but my labs on a normal day at home could be worse than your icu patient. Listen learn be open. There is so much more for us to learn