12 Tips For Caring For Patients With Uncommon Conditions

This article was republished with permission from SCRUBS Magazine.

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 our 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!


This article was republished with permission from SCRUBS Magazine.

5 COMMENTS

  1. Yes, great conversation.
    Definitely believe admitting you are not familiar, but willing to learn from the patient as an”expert in their own illness” and support-collaborate. True, too NORD, organizations that work purposely with that disease or condition, centers of excellence, and our tried and true use of Grey’s Anatomy and Harrison’s. I think in the end, honesty, compassion, and the willingness to learn and support!

  2. As a mother of a grown daughter with a rare disease I can speak to this! I love the ones that want to learn, that are interested in understanding what all it entails and how we manage things. That put value in the “tricks” you learn to manage the disease! That ask for websites where they might learn more. The ones who ask “what can I do to ensure you get exactly what you need to get better, since this disease is not one I have dealt with before” . Admitting you do not know everything is the true sign of intelligence! And that applies to Doctors especially, if you try to fake it I have no respect, if you say this is beyond my knowledge base or my expertise but I will find someone to help us out or do you have a specialist I can contact…those are the truly intelligent Doctors!

  3. Perhaps the patient can not communicate. Always include the caregiver with your questions too. My son-in-law has Huntington’s Disease and is unable to communicate in a rational manner. I have asked several family care physicians, and none had ever seen an HD patient. Therefore, how can they even begin to understand what is going on and how to manage HD.

  4. As an RN with a rare disease I have much more respect for a nurse who says they have never taken care of a patient with my problem, rather than ignoring the disease and hoping they can be done with me quickly. I love to teach and am proud to teach a colleague about the do’s and dont’s of my care. I do expect that caregiver to do research afterwards, I think that’s always wise.

  5. NORD (National Organization for Rare Disorders) is a good place to start to get information. When talking to patient and family listen to their questions and get them answers if possible. I work in a facility that cares for many unusual diagnosis’s and I get a lot of information from NORD. If you contact them about a disease they will send you all the educational information that they have for staff and family/patient. They have even sent DVD’s with the information for some diseases.

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