Empower Patients

Violation of informed consent widespread

In law as in ethics, the right to informed consent remains the "bedrock" of the modern medicine. Two stories on hospital medical care last week show just how widespread is the violation of this basic right.

They both reported on the number one problem facing patients and their families: a failure to communicate. There can be no informed consent apart from a steady process of communication between "team" and patient.

In last Wednesday's Wall Street Journal, Laura Landro discussed the Press Ganey Associates health care satisfaction survey based on more than two millions patients at 1,576 hospitals. According to the survey, there remains a "communication disconnect" between providers and patients. Despite the prevalence of patient satisfaction surveys, hospitals have not responded well to the opportunities for improvement presented by patients and their families. Patients consistently report feeling "ill-informed" about treatments in the hospital.

The "communication disconnect" can have devastating consequences as reported in last Monday's USA Today by Liz Szabo. In "Patient, protect thyself," Ms. Szabo illustrated how miscommunication inevitably leads to medical error.

Gillian Trumbell suffered from a rare heart condition that sends her to the hospital once a month. Szabo tells the tale of how a hospital employee showed up in Gillian's room and announced he was taking her for dialysis. If not for her loud protestations, Gillian would have been treated for kidney failure.

It's a sad day for the process of informed consent when patients are placed in the position of having to scream to get the attention of providers. But, according to Szabo's excellent piece, this is precisely the advice given by leading authorities as a remedy to stem the tide of medical error. Said one, "It's your body!"

 

Josie's Continuing Legacy

If you have seen the video of Sorrel King discussing the death by medical error of her 18 month old daugther, you will not soon forget. The video has been circulated by the Josie King Foundation as part of a project called the 100,000 Lives Campaign co-sponsored by the Institute for Healthcare Improvement. The video of Sorrel is nothing if not emotionally draining. Her speech is the medical equivalent of a call to arms.

I could not help but think of Sorrel as I read in Bloglines the USA TODAY feature story, "Medical teams swoop in at family's behest." Robert Davis writes a wonderful piece about a new program that's been tested in a number of hospitals.

His article begins with a frightful account of circumstances similar in many ways to Josie's. A mother notes something gone horribly wrong with her child in hospital. In Sorrel's case, she stood by helplessly as she watched a nurse wrongfully medicate her daughter. She was utterly powerless over what was happening to Josie. She could do nothing but stand by and watch as Josie died as a result of medication error.

In Leslie Nambo's case, she watched as Isabelle, her 3 yo daughter, struggled for breath in her hospital bed at N.C. Children's Hospital in Chapel Hill. Davis reports how Leslie noted, "Her lips were whitish. Her rib cage was caving in with each breath."

This is where the similarities between the two cases ends. Leslie Nambo was not powerless. Instead, she was able to summon a "rapid-response team" by dialing an in-house 911 option! What had been only available to staff members, is now available to patients and their advocates.

Davis tells how after Nambo dialed the number within a matter of minutes Isabelle's room was filled with doctors, nurses and other specialists. They just "swooped-in."

Most compelling about Davis' article is his observation that relatives are often the first to note the warning signs of impending trouble. Hospitals are only just beginning to recognize this fact and finally do something about it.

Tami Merryman of the University of Pittsburgh Medical Center calls the in-house emergency number a "patient empowerment" strategy. Hear, hear!

Davis reports that, much "to her surprise," healthcare team members listened to Nambo's concerns and did not "shove her out of the room."

The most telling quote comes from Mary Osborne of CHI, who stated, "People die unnecessarily every single day in hospitals. The sooner we admit that, the better our patients will benefit."

(It's a safe bet in many systems, Mary'd be gone for uttering that truth!)

At the end of the article, my thoughts drifted back to Sorrel, fighting back the rage and the tears. She can take some small solace in Josie's continuing legacy. Leslie Nambo probably doesn't yet realize it, but she just may owe Isabelle's life to the work of the Josie King Foundation!