Nurses get it

Among the feedback I’ve received on our kits, the stuff the nurses have to say is especially interesting. I’ve had several RN’ s as patients take the kits to the hospital for their own use. One said “my biggest fear was infection”.  She said despite a medication error that prolonged her husband’s stay one day, he returned home infection-free and she was thrilled. Another said engagement of the patient to combat infection is long overdue and she is urging fellow nurses to support this initiative. A third said the minute she put the hand sanitizer and sign at her bedside, a stethescope and blood pressure cuff were left in her room dedicated to her own personal use. All said the nursing staff was intrigued, curious and supportive of the “kit” approach (though some admitted they had worried about this beforehand).

What do you get from this?

I invite you to weigh in.

No Place for Secrets

One thing I hear often from families  who have lost someone to a hospital-acquired infection is: “we had no idea” or “we were blind-sided”. This lack of information adds insult to injury, because we’ll never know if there’s something we, as family members and/or advocates, could have done. My friend Pat W. says she would have at least called for palliative care for her father earlier. Greg G. says he wished he and his family could have better prepared to say goodbye.

Here is an eye-opening excerpt from a November 18 story in the Seattle Times: 

MRSA: Patients revolt against hospital secrecy

MRSA: Consumers have launched a battle against hospital secrecy and demanded aggressive steps to control infections like MRSA. But in Washington state, MRSA rates remain hidden and state initiatives to combat the drug-resistant germ have come up short.

By Michael J. Berens and Ken Armstrong

Seattle Times staff reporters

A night-shift nurse slipped into Jeanine Thomas’ hospital room and whispered, “I don’t know how you’re taking this so well. If I were you, I’d be curled up in a ball crying.”

The remark mystified Thomas. She’d had ankle surgery, and yes, there had been complications. But she thought she was recovering. Was there something she didn’t know?

In November 2000, Thomas, then a 45-year-old antiques dealer, had slipped on ice and shattered her left ankle outside her suburban Chicago home. But days after surgery at her local hospital, the skin surrounding the incisions turned black, and her body swelled. Doctors wanted to amputate, but Thomas, an avid tennis player, refused to let them.

Then, a friend told Thomas about her mother’s battle with MRSA, an antibiotic-resistant germ. Their symptoms matched. Thomas confronted a doctor and learned the truth: She, too, had MRSA. Only now did the nurse’s comment make sense.

Thomas asked doctors how many people get MRSA. She was met by silence.

“That’s when I knew — a light bulb went on in my head,” she says. “They don’t want anyone to know about this.”

Today, Thomas is exposing MRSA’s staggering toll as one of the nation’s most influential patient advocates. Because of her persistence, Illinois hospitals now must disclose MRSA infection rates and screen for the germ. She’s also pushing for federal legislation that could enhance patient safety in Washington and every other state.

Thomas epitomizes a revolt in health care. A growing number of consumer advocates — many bound by ordeals with MRSA, or methicillin-resistant Staphylococcus aureus — have vowed that if the U.S. hospital system will not heal itself, they will do it. (full story at http://seattletimes.nwsource.com/html/localnews/2008403751_mrsaday3m0.html)

Working for the Same Team

Whether you’re visiting us for information, connections or comfort, we welcome you to the conversation about empowering patients to have a role on their own health care “team”.  Should they be told in advance how infections are transmitted, or ask what medication they are being given?  

For many years we’ve gone into the hospital to get well (and we have) with a huge level of trust in our caregivers. I for one am thankful for the warmth, dedication and professionalism of nursing staff, who are angels on earth. It’s not the caregivers who are the problem. It’s our world that has changed. For one thing, some 70 percent of bacteria that cause debilitating infections are now resistant to the antibiotics commonly used to treat them. For another, there’s no nationally mandated protocol for cleaning patient rooms, where potentially infectious germs can be left behind to re-infect others. When budgets get squeezed (and what business isn’t dealing with that?) personnel, including nursing and housekeeping staff, often take a hit.  And even if there were dozens of housecleaners per floor, would they never EVER “miss a spot”?

We patients know our bodies and how we’re feeling better than anyone. If we (or our advocates) know what to look for, or have information about what’s “normal” and what’s “not”, we have the opportunity to discern it and point it out to our caregivers. What we need is a greater cultural acceptance of our role, and the confidence to put it into practice. With the virulent nature of some infections, which can get out of control quickly, along with the potential for other adverse events, hours or even minutes can be precious and can turn into lives saved. With knowledge, we can also have a role in avoiding infection in the first place.

So, patients and families, let’s lend our collective eyes and ears to this battle. We are consumers of health care just as we are of cars, cameras and take-out food.  One difference is with health care, there’s no return policy, no rain check, no “make-goods”. You only get one chance to get it right the first time. Doesn’t it make sense to get informed and count yourself as one more “back-up” to the team that’s caring for you?

Bedside Manner: Advocating for a Patient in the Hospital

Worth reading: a recent Wall Street Journal article: “Don’t go in the hospital alone…if you can possibly avoid it”: http://online.wsj.com/article/SB122514012478473347.html