Hospital of the Future: The Super-Informed Patient

On Saturday, The Petri Dish posted a great review of Michael Moore's SiCKO here. Relax, I'm not about to go off on another cinematic rant.

The post makes a great point: Many of the stories contained in the shockumentary communicate an unintended tangential lesson, namely this...

In our current health care rodeo, tales of loss and tragedy are underscored by a deficit in patient knowledge about our conditions, as well as the systems in which we must orchestrate self-care.

After viewing the movie, Petri asks of the patients shown: "Did many of them bring their situation on themselves? Probably. Are many of these people confused and ignorant of why such circumstances came about? Probably."

It's a good point, and one not often made, at least from the consumer-advocate side.

Medicine is, at some essential level, about caring for those who do not have the skill or expertise to care for themselves, those who lack the knowledge and training to diagnose and determine an effective course of treatment. In some instances it's social work with a scalpel (or a shovel).

As Petri says, "medicine is fundamentally linked to helping those that cannot help themselves or don't know better and it is very difficult to extricate medicine from that belief."

I'd like to think many of us, or at least the self-selecting 'super-informed' patient category (which is where unrepentant Type A bloggers belong) have done our homework before arriving at the hospital for prep on the day of a surgical procedure, for example.

Note: I'm picking surgery as an illustrative example for patient involvement because it's a pretty aggressive intervention, and if you don't prepare yourself for surgery, well, you're probably not going to be actively engaged in ensuring your annual physical is a 'two-way' conversation either.

Like voting at the age of 18 in national elections or the awe-inspiring option of doing our own taxes, in the current U.S. system choosing our level of involvement in medical care is a responsibility and - dare I say it - almost a right.

We can pick our docs (to some extent), we can pick our hospitals (to some extent), we can even pick how much or how little we want to know about what's going on in our bodies. And speaking of "universal care," we can walk into an ED just about anywhere and receive care, regardless of our ability to pay.

As more talented bloggers have pointed out with a great deal more eloquence, this viewpoint largely allows us to jettison responsibility for our personal health and rest the burden of care decisions on medical caregivers (and then sue them later if we don't like the results).

There's no doubt in my mind that current patient education efforts fall woefully short. Our system does not teach patients to self-advocate or be knowledgeable about care.

And even in instances where we want to be involved in the care process, the purchasing, decision-making, and payment/reimbursement minutiae make individual involvement largely prohibitive in terms of personal ROI.

Our system also doesn't teach us about the large role we can play in improving patient safety by taking some level of responsibility for informed involvement.

If I had a dollar for everything I wish I knew before a surgery (or every question I knew to ask, every supply I should have had waiting in the cabinet at home post-discharge), I'd be a rich woman.

Granted, there are some rare birds who take it upon themselves to involve patients in the treatment process, but such efforts currently transpire at the singular rather than system level.

Other patients are blessed enough to have a doc or nurse or PA or NP (or other medical acronym) in the family who becomes a hospitalist shepherd, guiding us through the murky waters of managed care.

Even if the caliber of your patient education program is excellent, however, patients must opt-in to 'owning' a piece of their treatment territory - and even with prompting, statistics, and soft incentives, NOT ALL will choose to become active participants in their care.

It's vital to remember that to some extent, there will always be four categories of patient populations:

Category 1: The Super-Informed. This category knows their meds, can spout appropriate medical terminology (may even be a doc, nurse, or medical professional), and will be aggressive in seeking 'cooperative' follow-up care in concert with their treatment team. They'll be early adopters of PHR, EMR, consider choosing a hospital based on publicly available pricing and quality data, and generally be those considered 'pains in the asses' by some care providers who dislike sharing the dias. AKA: Know-it-alls (or, even worse, "Think-they-know-it-alls.")

Category 2: The Semi-Informed. These patients may know someone who knows someone who had "this type of heart surgery." They may have a list of meds, but may speak in general terms about care, expectations for functionality post-procedure, etc. They obviously comprehend the bigger picture about their condition, but aren't interested in the specifics. Likely to bring cookies to the nurses and have lots of visitors. AKA: "The nice ones."

Category 3: The Selectively Non-Informed. Although capable of understanding basic factors contributing to their care plan, these patients just don't want to know. They want to rely completely on the medical team to "do what needs to be done." They don't ask what medications they're being given, and when pushed may refer to them as "my heart pill" or "the little blue one." They often look to either a strong primary caregiver (spouse, parent, guardian, paid provider) to make decisions or outline their care on a strictly "need to know" basis. Usually want out of the hospital fast, as in yesterday, and may demonstrate acute discomfort when faced with complicated decision-trees. AKA: "The quiet ones."

Category 4: The Non-Informed.
For some reason or another, these patients are not capable of understanding care. Perhaps they're minors, developmentally disabled, etc. Perhaps they're overwhelmed by the system or have had terrible experiences with a loved one dying, etc. They may not have ever experienced a hospital stay/surgical procedure, and perhaps are in the hospital as the result of an emergency room admit/trauma/accident where there wasn't time for them to review care options. AKA: "Those poor things."

Another point: Based on changing life circumstances, patients may move selectively in/among the four categories above.
For instance, someone receiving palliative care for cancer may choose to move from Category 1 to Category 3 based on an end-of-life viewpoint.

Regardless of a patient's interest level in care participation (1-4 above), each patient should know and carry certain basic information with them prior to a surgical procedure.

In an ideal world, my required preop patient prep kit would include the following:
  • Doctors info (including surgical team)
  • Patients info (including insurance, home/work addresses, contact numbers, etc.)
  • Schedule (what time patient is due to go into surgery - but signed awareness statement that this often changes due to rotations, emergent cases, etc.)
  • Current medications/allergies/sensitivity list - if you get a rash with the use of surgical tape or have a sensitivity to morphine, include it here
  • Advanced Directive (if completed), Living Will (where applicable), DNR orders (again, if applicable), emergency contact (qualified to make end of life care decisions or communicate patients wishes in case of adverse events).

No matter our selected level of involvement in care, we should know our doctors names (surgeon, anesthesiologist, PCP/referring physician, etc.), and, GASP, have them written down.

We should also have a list including their office addresses, phone, fax (and pager/beeper) numbers in case there should be an at-the-wire problem with insurance verification or approval. Note: I once waited 18 hours for an ortho surgery to commence because someone had typed an "OP" instead of an "IP" on the insurance forms for a 2-site bone grafting procedure (left iliac crest harvest to right talar dome).

We should all have a list of relevant insurance information, including the customer service line and copies of any necessary referrals.

We should all have packed a bag with comfortable clothing (washed with nonscented detergent/softener as sense of smell may be a bit whacky postop), plenty of books/magazines/CDs/Ipod etc, as well as something to do in case temporary vision changes preclude reading/typing.

We should all have a list of allergies and current medications (!!!).

We should ALL not rely on the above information to be included in our chart and available for our exclusive access pre-op. This is a busy time for your caregivers, and we should be helping them operate as safely and efficiently as possible by being responsible for some level of self-preparation.

This is just a start, but you get the idea.

So who should be in charge of revamping patient education efforts and instituting new patient preparation procedures?

Like patient safety initiatives themselves, in order to succeed, patient education reform needs buy-in from staff at every level.

However, the new Chief Experience Officer would be a logical position to champion this crusade. Some hospitals are using videos with docs as narrators explaining 'common' surgical procedures so that patients have more knowledge about what to expect.

But are these patients also being told to start prune/fiber use the day after GA, stock the cabinets with bland foods, and have a "phone a friend" available in case of non-emergency complications or needs?

Before surgery, I'd like to see a relatively humerous or light-hearted video with medical staff explaining "100 things I wish I thought to ask before surgery" sharing "inside" tips in a confessional or reality TV-type format.

In fact, I'd pay to buy one...or, if I was a hospital Chief Experience Officer (or Chief Executive Officer) that wanted to get my hospital's patient education efforts out swirling in the www-ether, I'd take the following steps:

1. Make the video.
2. Post portions on YouTube and other file-sharing sites.
3. Post the video on my blog.
4. Solicit an open-comment period - former patients (from around the world) would probably contribute plenty of wisdom nuggets we didn't think to include.
5. Revise the video.
6. Explore an arrangement with the production company to modify/customize the video for other hospitals and systems, with a royalty fee structure in place. Also consider purchasing the production company or a stake in the company to smooth the path for future revenue-generating partnership offerings.
6. Release!

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