Speaking Up for Better Care

Ellen Pierce, MD, has been on nightly homePEN for twenty years, after an extensive small bowel resection for Crohn’s disease. She has been an Oley Foundation member since 1992 and is the author of several articles on Crohn’s disease. (Her articles can be found online at www.pubmed.gov.)

Ellen recently shared the letter below with us, and we, with her permission, are sharing it with you. It is a good example of an appropriate, well-written letter from a patient to a health care provider expressing concern over protocol issues. We hope you will find it useful as you seek to advocate for better care, for yourself and/or your friends and family members.

Other resources to help you feel more comfortable advocating for yourself include Oley’s:

• MY HPN, Module One: Take Charge—an online, interactive learning module available at www.oley.org. The goal of this module is to teach you, the HPN consumer, how to take a more active role in managing your HPN therapy.
• Save My Line posters and bracelets—for use by HPN consumers when hospitalized. Placed near the patient’s chart, the poster will help remind health care providers about basic principles that will keep you and your central line “safe.” The bracelet is a further reminder. To obtain a Save My Line poster and bracelet, call (800) 776-6539, e-mail harrinc@mail.amc.edu, or download the poster at www.oley.org (choose “Resources,” “Save My Line”).

May 22, 2011

Hello Dr. ______,

Thank you so much for squeezing me into your schedule last week to take a look at the thinned segment of my Hickman catheter. I appreciate our thoughtful discussions. I am writing to you today because of an issue that arose during the appointment.

As you know, I have been on TPN for 20 years, and have had my current catheter for 13. At my PN provider’s conferences and through Oley Foundation newsletter articles, I have heard many horror stories about careless, sloppy handling of central lines by health care providers. I personally know of two PN patients whose deaths were a result of central line infections. I have made it a policy to not let anyone within 5 feet of my catheter without having observed them wash their hands and whatever else will be near the catheter, including stethoscopes and ECG pads! I make it a point to “hook up” to a bag of saline before procedures involving conscious sedation or general anesthesia, so only the injection port in the tubing, rather than the catheter itself, will be touched. When I hook up or unhook at home, I wash my hands at the closest sink. I wash them again with rubbing alcohol from a bottle at the hook up table just after arranging the supplies, and then usually again, depending on what I have accidentally touched on the table. This can sometimes reach comical numbers!

I specifically brought a bottle of rubbing alcohol to the appointment, because I do not touch my catheter without first washing my hands with soap and water or rubbing alcohol. After discussing what was going on with the catheter, you were just about to examine it when I asked you to wash your hands…and you refused, because you “weren’t going to touch the catheter.” I put some of my rubbing alcohol on my hands and then we looked at the catheter. During our examination you…touched the catheter. I was upset that you refused my request to wash your hands, and my dismay was compounded by your touching the catheter without having washed them.

I know that, now that I have brought my concerns to your attention, I can rest assured that you will follow the Ellen Protocol for Her Hickman Catheter during future appointments. I am enclosing a pamphlet on hand washing. I hope you might consider having a similar pamphlet in patient care areas. I look forward to your continued help with my catheter, Dr. _____!

I am most gratefully and respectfully yours,

Ellen S. Pierce, MD
Spokane Valley, Washington

Extracts from “Help Us Help You Prevent Infections,” reprinted with permission of Washington State Hospital Association. To order copies, call (206) 577-1839 or go to www.wsha.org/page.cfm?ID=bookstore. The brochures are available in English and Spanish.

Make your care safer. Ask your doctor, caregivers, and visitors to wash or sanitize their hands.

Become a partner with your doctor, nurse, all the health care workers that enter your room, and your visitors by asking them, “Did you wash or sanitize your hands?”

Ask the question any time your doctor, nurse, or heath care worker is about to touch you or touch things that are used in your care.

No! …Health care workers are interested in your care and will expect you to ask them about hand hygiene!

• Germs that cause infections can be spread in a number of ways. The most common is through hands.

• Health care workers can get their hands clean in two ways: washing their hands with soap and water, or sanitizing their hands by rubbing them together with alcohol-based gel. [Editor’s note: current research shows that soap and water is more effective against C. diff than alcohol-based hand sanitizers and wipes.]

LifelineLetter, May/June 2011