Patient? Consumer? We Need a New Word

Now that the history-bending Affordable Care Act decision is in, we're gonna have to define everyone's roles in health care. Definitions are hard without words. And the ones we have for us people who use/need//want/ health care frankly don't cut the mustard. We need a new one.


The French gave us tasty food, the Statue of Liberty, and the wonderful phrase "le mot juste". Translated literally, it means "the exact word", invoked when a word fits a situation so precisely that angels sing. Suffice it to say, America is still searching for le mot juste to describe the patient/consumer/partner/person at the center of health care, and all its gnarly problems.

Why is "patient" not le mot juste? Because today I am a person, but tomorrow I could be a patient. Or today I am a patient, but please, please, tomorrow let me be just a person.

What's wrong with "consumer"? Most garishly, it speaks to a very one-way deal. You produce, I consume. The image that pops into my head is of Jabba the Hutt from Star Wars, resplendent in his slovenly girth, cackling obscenely as he tosses hapless, plaintive live creatures into his overfed gullet.

What about "partner"? Yes, this implies equal footing, equal contribution, equal investment, equal awareness, equal engagement...the "e-Patient" movement. A wonderful and worthy  community I urge everyone to join (at e-patients.net). But (sigh,) for your average Joe or Martha, we ain't there yet.

"Person"...ah, what an inclusive, important and utterly white bread word. A person is what the census bureau refers to as something like an actual living person. As a fan of AMC's The Walking Dead I can assure you sometimes you have to be almost on top of someone before you know if they're an actual, viable person, or just a "walker".  When I think of the "persons" out there, like vibrant, precious, irreplaceable human beings like my friend Wally, or Oprah Winfrey, or Aurora who cuts my hair, the word "person" is just so lame and lifeless. Like "digit". 

The medical world is fond of acronyms. I believe at last count there were 3.2 million acronyms for various agencies, diseases, medical websites and companies that will tow your car for parking in the wrong spot at the hospital. But maybe there's just one more acronym that would perfectly capture the (insert word for patient here) trying to figure out how to survive/pay for/understand/participate in/improve/partner with/find health care.

It would be a combination of
Patient
Consumer
Partner
Person

Maybe pacoparper?
Copay partner? (closer)
Perpaparcos?

My head hurts just thinking about it.

Maybe you can help me out here. Because, friends and fellow copay partners, paycoparpers or whomever you are, the Affordable Health Care act that the SUPCO (another acronym, used in newsrooms) passed is gonna bring in a new day. Whether that gets you knickers in a twist (another great borrowed phrase) or you're leaping with unbridled joy, there's important stuff you should really be paying attention to. Like looking out for medical harm and infections you get in the hospital that kill 200,000 of us every year. (Imagine two planes crashing every day, and baby dolls and charred shoes littering Zuccotti Park. And Yosemite and the Great Smoky Mountains too.) It's not because most people that work in hospitals don't try really hard to stop it. But there's a whole lot going on in hospitals every day, with less money to go around to fix it, and lots of data entry to do and hand-offs and superbugs and paycoparpers who just lie back and expect to be fixed without their helping. But I digress.

We really need a new word. One that defines a whole new category of player in the game of health care. Those whose skin is oh-so-tightly in the game they would start shrieking like those clueless teenage girls in the Scream movies if they felt the pinch. Which they inevitably will, because pinches (defined in the Dictionary of Life as illness or accident to you or your favorite cousin) is what happens to humans.

We need a word for the kind of paycoparpers who hate to lose, or at least are aware they're knee-deep in a game where loss can be of the "ultimate" variety.

Please nominate your cool, new mot juste. The best one wins a prize of my choosing.

Or maybe we should just ask the French.

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Life Isn't so Bad... is it?

A lot of the time I have a beaming smile across my face, but of late that smile has dipped a little, only because I had to have yet another aspiration done on yet another cyst. It means I have to wait another week for the medical board meeting, but fingers crossed no nasties are found.

In my own way of dealing with these glitches I have been going through the autograph collection which is mounting up. It is time to start off loading some of these autographs to auction charities. I have developed a separate blog which is called ‘To Sophia... Collection’ and added the film footage from some of the premieres we have attended. This in turn shows we are meeting Tom Cruise and various other stars, despite people being slightly concerned about my whole approach to my diagnosis. To me doing this hobby with Sophia has added excitement and a way of helping others.

I have also become a Nana at the age of forty-one, so life isn’t treating me so bad is it....

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Getting in on the "Action Plan"

There's an old Dutch saying my mother often shared: "No, you've got. Yes, you can get." So when I got word the Department of Health and Human Services was soliciting feedback on its Action Plan to Prevent Healthcare-Associated Infections, I channeled my eternal optimist to ask for a "yes" on stuff I believe matters a lot to patients. The letter below goes off to HHS by today's deadline (there's no Dutch saying for "getting important stuff done early"). There's also a bunch more I would say, but my college journalism professor had a saying, too: "Keep it short".

Your thoughts are welcome.

June 25, 2012

Department of Health and Human Services (HHS)

Office of Healthcare Quality

200 Independence Ave., SW., Room 711G

Washington, DC 20201

Attention: Draft National HAI AP

To whom it May Concern:

As the consumer representative since 2008 on the RI Department of Health’s Hospital-Acquired Infections (HAI) Subcommittee, an advisor to the CMS Partnership for Patients Patient-Family Engagement Network convened in May 2012, a person who lost her father to complications of an HAI (and worked to help pass two Rhode Island state laws enhancing patient safety), and an ardent supporter of patient engagement as a driver of quality improvement in health care, I am writing to provide expanded feedback on the draft National Action Plan to Prevent Healthcare-Associated Infections: Roadmap to Elimination (HAI AP).

I’m pleased that the HAI Subcommittee on which I serve has conveyed to you by separate correspondence (to which my signature is affixed) an endorsement of many of HHS’s HAI reduction initiatives, as well as areas of continuing challenge that would benefit from your office’s expedited direction and support. Areas where I feel your support and guidance are particularly needed include the following:

1) Resolve inconsistencies in the guidelines promulgated by the various federal agencies that govern or direct HAI reporting. Currently, the lack of clear mandates and guidelines leaves many if not most hospitals reporting the minimum required. Rhode Island has in fact gone beyond federally mandated reporting requirements and begun to voluntarily gather data on CDI (Clostridium difficile infections), which you are likely aware are “at their highest levels in history”, according to the CDC.[1]While RI should be commended for its pioneering stance in this regard, we on the Subcommittee continue to struggle with which data guidelines to use (we’ve spent more than a year just determining how “hospital-acquired” is defined).  Absent clear guidance, there is also concern that the resources we’re devoting to this effort will be moot once new federal directives are finally announced. These factors drag out the process, and compromise our capacity to deliver information that is meaningful and actionable to the public. The result is that most consumers remain unaware of the risks of HAI in healthcare settings, and so are unable to proactively partner in their care. This leaves nearly 300 people still dying each day in hospitals from HAIs that might have been prevented. 

2) Patient engagement is critical. In today’s complex, multitasking medical environment, human error is unavoidable. Patients and their advocates deserve care that acknowledges this truth. The increased incidence of C-diff infection, and of pan-resistant MDROs (infections resistant to all known antibiotic therapies) underscore the need for a “common mental model” of HAI prevention. The public must understand the risks, symptoms, course of disease, and behaviors s/he can undertake to mitigate the risk of contracting an HAI. (For instance, hospitalized patients might be told that to avoid C-diff infection they should never touch mouth or nose with unclean hands). Rhode Island has passed a law requiring distribution of such information to patients upon admission, or as soon after admission as possible (R.I.G.L. Chapter 23‐17.17). As we move toward implementation, this initiative may serve as a model for other states.

3) More resources are needed to research, prevent and combat HAIs in medical settings, reflecting the critical nature of this public health threat. I’ve become increasingly alarmed by comments at our Subcommittee meetings that new regulatory mandates divert time and attention from the patient’s bedside (“we’re spending too much time doing data entry”), and that in revenue-challenged times, infection control must fight a losing battle for resources. This concern is reflected in publications and medical blogs elsewhere in the nation. Your leadership in ensuring these resources are available is critical. “High tech” care is no substitute for “high-touch” care.

4) Take meaningful steps to synthesize the input of patients and families on patient engagement strategies. Though patient and family engagement is widely touted as a key goal of CMS and HHS to improve the quality of care, a true embracing of the patient/family perspective has yet to manifest through any federal entity. Case in point: I was among a group of patient advocates asked to participate in the kickoff meeting of the PfP Hospital Engagement Network, scheduled for late May 2012 in Washington, DC. Days before the event, we received an email that the meeting was cancelled, due to “budgetary restrictions on federal travel”. Instead, a two-hour webinar took its place, during which fifteen minutes was allotted to advocate input. Those of us listening via our computers (instead of our phones) found ourselves technically shut out of speaking up even during those fifteen minutes. Though the public relations firm handling this project has committed to “do better” (based on poor feedback from the advocate community), the event at the very least delayed the onset of any next steps that might have been taken toward helping patients. The support of HHS in getting this agenda on track (perhaps restoring funding for the gathering of PFE advocates) would, I believe, serve the public good.

History tells us that against strong lobbying interests, only public demand can fuel the engine of culture change. Many of us in the advocate community have innovative ideas on how to accomplish this. Personally, I’ve offered to help the PfP PFE network develop and deploy patient engagement strategies that utilize social media, the talents and passions of new college graduates, and a new patient-centric device that empowers the patient with tools for hand hygiene, communication and the management of care transitions. Whether it’s these or other strategies that ultimately are adopted to foster patient engagement, I’m hopeful we can move quickly, as every day that passes is a lost opportunity to save someone’s family member from avoidable medical harm.

I appreciate your consideration of this input, and would be pleased to provide further detail. Thank you for your work toward a more responsive, holistic and satisfactory health care system.

Sincerely,

Pat Mastors

Patient Advocate, PfP PFE Network contributor, Member, Rhode Island HAI Subcommittee, Member, Consumers Union Safe Patient Project, Participant, IHI Annual Forum, President and CEO, Pear Health LLC

www.thepatientpod.com

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[1]For the report, researchers looked at data from the Emerging Infections Program, NHSN, and c diff prevention programs in Illinois, Massachusetts, and New York. Key findings include:

·             94% of all CDIs were related to various precedent and concurrent health-care exposures

·             Of these patients, 75% had CDI onset outside of a hospital.

·             Some cases occurred in patients who were exposed to multiple settings including nursing homes and hospitals.

·             Mortality from CDI increased from 3,000 deaths per year during 1999–2000 to 14,000 during 2006–2007; over 90% of these cases were in patients aged 65 or older.

·             Hospital-onset CDI are estimated to cost $5,042–$7,179 per case.

·             Much of the recent increase in the incidence and mortality of CDIs is attributed to the emergence and spread of a hypervirulent, resistant strain of C. difficile.

(Sources: The Advisory Board Daily Briefing, http://advisory.com, March 7, 2012; Centers for Disease Control and Prevention, http://www.cdc.gov, March 6, 2012)

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A broken heart; an award-winning video

Emily-Ann and her Dad

In August 2008, the week before Emily-Ann Croke of Riverside, RI started freshman year at Providence College, she said goodbye to her father.

Forever.

He'd spent the last days of his life in a hospital intensive care unit. He'd come in to the hospital for treatment of esophageal cancer. Emily and her mom were stunned when he died six weeks later of sepsis from multiple infections. He was 48.

Soon after, Emily ended up testifying for passage of a new patient safety law in Rhode Island. Otherwise jaded lawmakers squirmed uncomfortably, as an only child recounted her last memories of the most important man in her life: 

"... there were also so many absolutely repulsive things that I witnessed while my father was in the hospital that not only caused the spread of these diseases, but should not have even occurred under any circumstance. For example, while fighting C-diff [infection], which resides in the colon, the hospital staff gave him an enema. When my mom later walked into the room there was human feces all over the floor, which no one bothered to clean up. My mom ended up cleaning the floor, which not only presented a threat to her and to other sick patients, but also to everyday visitors and staff..."

Emily was at the State House, testifying, at my urging. In fact, I'd lost my own father to complications of a C-diff infection two years before she lost her father. (Sadly, there are more of us than you might think.) 

The law passed. Emily went on with her college life. But the more she read about hospital-acquired infection (HAIs), the more alarmed she became...both by the prevalence of the problem (99,000 people a year die from HAIs), and the fact that most people are clueless about the risk. She wanted to do something.

She contacted me again a few months ago. Could I help put her in touch with some people to interview for a film project on hospital-acquired infections?

Last month, the Providence College Film Festival screened a dozen student-produced films. I watched, alongside Emily, her mom and a family friend. The last video presented, "A Silent Epidemic", was shot, written, produced and edited by Emily-Ann Croke.

Emily's film won first place. The judges swarmed her afterward. This is important...people need to see it...you should enter it in other film festivals...

Here it is: a daughter's homage to her father, a heads-up for you, and a fine piece of video on its own. Watch, and then Tweet, re-post and share it...you can help Emily make a difference.

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