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Steven Kussin Steven Kussin

Featured Guest Blogger: Steven Kussin

I run a Shared Decision Center. And shared decisions are the unlikely union of seemingly disparate fields of medical knowledge. It acknowledges the rigor of evidence based medicine and science’s role in medical care. It nonetheless prioritizes patient preferences, priorities, and risk tolerance.

Science will never bow to, nor will it be able to acknowledge, the throbbing messiness of life.

When decisions need to be made, a patient’s voice should ring out with the mantra, “Nothing about me without me.”(Valerie Billingham, Through the Patient's Eyes, Salzburg Seminar Session 356, 1998 ).

Sadly and still, most health consumers do not realize that most medical decisions are preference sensitive. No decision can be a good one if it’s not a reflection of the patient’s values. Shared decision making has been correctly called the “Pinnacle of Patient-Centered Care”. http://www.nejm.org/doi/full/10.1056/NEJMp1109283

Science will never bow to, nor will it be able to acknowledge the throbbing messiness of life.

Shared Decisions require informed opinions

It seems that every day folks are urged to, “be your own advocate.” It’s now an empty TV catchphrase. The bromides follow:

  • Speak up
  • Ask questions
  • Know the risks and benefits

All very nice. But speak up about what? To whom? It’s fine to ask questions, but how do you judge the answers? Shared decisions require informed opinions. Patients must do independent research or obtain skilled and unbiased guidance. Patients will rarely get a full disclosure of any intervention’s risks and benefits from the doctor who’s offering a stretcher adventure or gurney journey.

Understanding educational brochures and doctor’s directions are vital. Today’s consent forms for risky interventions are shoved in front of patients’ faces for quick signatures. A 12 minute visit, on an uncomfortable exam table, clutching flimsy paper pajamas in the futile attempt to hide soft body parts is no venue for reflection or questions. It's certainly not the place for wise decisions. All this while 'The White-Coated One' looms above like an Easter Island monolith.

Many who ignore patient preferences think they are doing their due diligence, given the lifesaving nature of their advice. Others know that the more a patient knows about a proposed intervention, the less likely they are to agree to it. (See: http://www.modernmedicine.com/modernmedicine/Obstetrics%2FGynecology+%26+Women%27s+Health/Decision-Aid-Can-Increase-Tamoxifen-Awareness/ArticleNewsFeed/Article/detail/647958?contextCategoryId=40157&srcemalert=40157 )

Last month in Britain (one of the homes of Shared Decision Making) nine out of ten patients were never asked about their wishes should they suffer a cardiac arrest. Many had life-threatening conditions. One in 52 who wanted to be allowed to die had their wishes ignored. http://www.hqip.org.uk/national-confidential-enquiry-into-patient-outcome-and-death-time-to-intervene/

Here in the U.S., the majority of doctors who feel their advice is potentially lifesaving or life prolonging (i.e., all of us) admit that patient preference is not very important, unimportant or is best left ignored. http://archinte.jamanetwork.com/article.aspx?articleid=1183455 .

Patients as Customers

Medical consumers are a pale reflection of their retail counterparts. People research their next vacation with greater skill and more effort than they do for an upcoming surgery. There are 50 brands of plasma screen televisions. All are made by only five companies http://en.wikipedia.org/wiki/Plasma_display . Nonetheless, consumers engage in PhD quality research and rabbinical hairsplitting. They argue bitterly amongst themselves (also rabbinical) on the comparative qualities of the smallest sub-pixel a human brain can process on a video display.

Doctors and hospitals, however, are viewed as all being the same. “Hey, she’s an M.D. She’s gotta be smart…right?”

Health Literacy

Even the most discerning healthcare consumers are hampered by their lack of health literacy and numeric skills. The media, big pharma, the medical device industries and a spate of physician lobbies work hard to keep patients in the dark. Patients’ heads are turned by the imaginative use of seemingly compelling statistics. The media spews out evocative stories of valiant survivors while touting the unproven, unsafe and unnecessary.

Hordes of public relation gurus, economic and behavioral psychologists, statisticians and the creative minds of the artistically gifted are wasted in the pursuit of manufacturing a pitch perfect, perfect pitch.

If you sat at a restaurant table and the server ungraciously plunked down a dish without the benefit of giving you a menu, you'd walk out. I would. Yet in medical care today, this is the routine.

A Secret Buffet

If you sat at a restaurant table and the server ungraciously plunked down a dish without the benefit of giving you a menu, you’d walk out. I would. Yet in medical care today, this is the routine. For most decisions there is a menu of choices. For some, a buffet awaits.

Finding those hidden (and even not-so-hidden) buffets can transform a radical and morbid surgery for things like low-risk cancer into watchful waiting. A smorgasbord of professional opinions has altered the very definition of many diseases. This allows patients to choose whether they wish to be treated or observed for borderline hypertension or cholesterol. When should a blood sugar be treated? Many times it’s up for grabs. Stable angina? There are so many choices for therapy that the ultimate treatment depends on who the patient is referred to. Many recommendations are not driven by any consensus in the literature.

Teaching Literacy and Numeracy

When it comes to the media and medicine, all doctors should suggest patients register at Gary Schwitzer’s site http://www.healthnewsreview.org/ .

When it comes to statistics and health the other no-brainer is the book, Know Your Chances: Understanding Health Statistics from Woloshin, Schwartz and H. Gilbert Welch.

Then It Gets Complicated

Good decisions are made at the intersection of patients’ knowledge base, against the spectrum of available options. When patients' preferences and priorities are encouraged, decisional conflict and buyer's remorse often dissolve while compliance increases.

How do patients amass a knowledge base that empowers their preferences when they can’t read the literature or understand the language we present to them?

Most medical information in a doctor’s office is presented at a college level. This is beyond most Americans who typically read with 8th grade proficiency. Almost 90% of adults have difficulty using the health information that is routinely found in our health care facilities. http://www.health.gov/communication/hlactionplan/

Even the over educated are under motivated when it comes to health literacy. Being number smart has become a first class ticket to geekdom. I had a literature professor who bragged about not having the math skills to balance his checkbook.

For Beginners

For those not able to read on the level that medical information is typically presented, there are options. These resources are not “dumbed down.” Instead, resources in plain language provide the means to moving up.

Videos, tutorials, illustrated explanations of hundreds of conditions are accessible to those who need a step up on the ladder.

Last week, my son asked me about the difference between DNA, genes and chromosomes. I muttered, stuttered and finally uttered the “I don’t know.” Off to Bill Nye the Science Guy and the Kahn Academy to get back to basics.

Medlineplus has an ‘easy to read’ option. http://www.nlm.nih.gov/medlineplus/all_easytoread.html

The NIH http://www.healthliteracy.worlded.org/docs/family/easy.html and Easy Health http://www.easyhealth.org.uk/ offer a great start.

After the Basics

Those who can should move up to more detailed and professional grade literature. It’s only in ‘doctor-only’ sites that patients learn the histories, mysteries and controversies that accompany most medical decisions.

‘Doctor-only’ apps allow patients entrée into our world and our data banks.

Medscape, MicroMedex, Epocrates and MedPage Today, are free. Patients should download them.

Health Literacy: Advanced Placement

Medical journals are better resources than Oprah and commercial medical sites like WebMD. I have asked patients to become ‘bottom readers’. Most docs are. When approaching a medical article, read the introduction, then go right to the bottom for the summary and conclusion. Industrial strength resources empower patients' questions. Doctors cannot dismiss them or the patient asking them. Intelligent questions (inquiries backed by data) is the portal to both learning and to being listened to. Bonus: Intellectual parity with physicians is the gateway into their circles of empathy.

Patients should register with the JAMA network. http://jamanetwork.com/ Full text articles are free and available 6-12 months from publication. The search engine opens the doors to over a dozen journals.

Cochrane http://www.cochrane.org/cochrane-reviews is the U.S. repository of all things evidenced based. Plain language and summaries outline the “best evidence”.

Lab tests online http://labtestsonline.org/ allow patients to understand their test results. It opens the door to having all labs cc'd to the patient who takes the risk and pays the fee.

Paying For It

There is no better way to know what doctors are thinking, than to read what doctors are writing. There are many fee-based services that permit these powerful insights. For those who want a more detailed analysis of basic, advanced and professional level patient information, see the links at the end of this article.

Many professional grade resources are surprisingly easy to read and hard to ignore in a system that’s becoming increasingly disorganized, fragmented, and characterized by poor communication, continuity, and compassion.

Lengthy links for the leisurely

Starting with the basics: http://medicaladvocate.com/?p=2314

Industrial Strength Apps:

Android: http://medicaladvocate.com/?p=2128

iPhone: http://medicaladvocate.com/?p=2062

iPad: http://medicaladvocate.com/?p=2028

Professional Resources for patients: http://medicaladvocate.com/?p=1375

About the Author:

Steven Kussin is the Founder and Director of The Shared Decision Center. He wrote Doctor, Your Patient Will See You Now: Gaining the Upper Hand in Your Medical Care (Rowman&Littlefield, 2011). His book was reviewed by the New York Times and was citied as one of the top ten health and wellness titles of the year by Booklist.com. Additionally, he blogs to an international audience-- follow him by visiting: MedicalAdvocate.com.