When Caring Hurts: Patient Experiences Reveal Lessons in Wound Care Nursing

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by Beth Hawkins Bradley RN, MN, CWON

How often do you really consider the person that is attached to the wound you are treating? Do you take seriously those complaints, grunts, and grimaces that he sends your way when you remove drape and peel foam from a wound being treated with negative pressure? It isn’t pretty, but it is pretty important. I would love to hear what you think after you read and consider the content.

For those of you who read my blog purely to increase your technical knowledge with negative pressure wound therapy, please bear with me this month. I had planned to write about peristomal hernias for my OstomySource blog and continue my series on NPWT techniques for WoundSource. These topics were pre-empted when I attended the Southeast Region WOCN conference this past weekend. There was a session that stopped me in my tracks, humbled me. I have always thought that I was a better than average nurse. I think that I can think critically to solve complex clinical problems. I love the home care setting, because I love people. So I thought I was an “all that” nurse. Ashamedly, I must admit that I am not. Here’s how I learned my lesson.

The session was actually conducted in two parts. Part I was a presentation on medical management of fistulas, and a WOCN discussing pouching and nursing management. Part II was a discussion of life with a fistula. These are usually done by a clinician colleague who tells the audience what the patient experiences when they have a fistula or ostomy. But this session was different. There was a panel of three real live humans who have or have had fistulas. One of the patients was a nurse. They had had medical journeys that could have been experienced by any number of patients I’ve taken care of over the years. But their lived experiences, I admit, I had not thought through. Here is a sampling of what I recall from their stories:

  • The pain in my gut was intense, grabbing, burning, stabbing. It continues now, even though I am healed.
  • I would ask for pain medicine and the nurse would say something like, “Honey, you just had pain medicine three hours ago. You can’t be hurting that much.” The pain medicine made me feel drunk and sluggish, but it did not stop the pain.
  • A lot of my nurses told me I should try to just bear the pain so I would not get addicted to the pain meds.
  • Pouch changes were like torture. Taking the pouch off was awful. My skin was often raw and on fire, but they scrubbed it anyway. Some of the things they put on my skin burned like hell.
  • The nurse would say things like, “Just breathe, I am almost done, this won’t be bad, be still now, this shouldn’t be hurting you.”
  • My pouch started leaking an hour after the nurse finished. They just kept stacking gauze on top of the mess and I had to wait until morning lying in my own mess.
  • Two nurses at two separate times told me that they were going to stick with me to find something that would work without leaking. I never saw either of them again.
  • No one knew how to take care of my fistula. I felt like no one else had been through this before.
  • A discharge planner said that she would rather die than have an ostomy or fistula.
  • I still struggle with fear that this could happen to me again. I have depression and I can’t get any energy back.

Does this impact you the way that it did me? I so often charge into a patient’s room or home ready to do battle with that problem pouch or wound dressing. That’s what I think is best for the patient. And it makes me sick to admit that I have said, things like, “This shouldn’t be hurting,” or “Almost finished, “just hang in there,” and “take some deep breaths.” And yes, I have silently judged patients for using narcotics too much.

What will I do differently? For starters, I will offer pre-medication every time before a pouch change, and actually wait for the meds to take effect. I will consider my approach to pain management differently with my wound care patients, as well. By the way: In another session on post-op pain, NSAIDs taken preemptively DO decrease pain. I will ask the patient if he would like to help to remove the pouch or dressing so that he can pace the removal to decrease his pain. I will never promise something to a patient that I cannot deliver. I will NOT apply alcohol containing products like skin barrier wipes and stoma paste on irritated or broken skin. And at the beginning of each session, I will ask, “What would you like for me to do for you today?” I imagine that I will get some responses that vary wildly from my personal session goals.

In thinking about this, this is the way that I would like to be treated. And in the scheme of things, it won’t take much longer to care for my patient. Will you join me in sincerely, actively caring?

About the Author
Beth Hawkins Bradley, RN, MN, CWON is the director of Clinical Operations at Cardinal Health. She has been certified in the specialty of Wound, Ostomy, Continence nursing since 1990.

The views and opinions expressed in this blog are solely those of the author, and do not represent the views of WoundSource, Kestrel Health Information, Inc., its affiliates, or subsidiary companies.

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Excellent post. Think of the pain patients suffer when wet to dry dressings are changed. I once had that experience and now I know what hell must be like.

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