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
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.
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.
Reblogged this on lava kafle kathmandu nepal.
I’m taking a class at Rice University called “Medicine and the Media.” The most recent topic we’ve been going over is how technology (and more specifically, the ease with which information can be accessed) affects the patient-physician relationship, as well as the importance of narrative between the patient and physician.
In today’s day and age, it seems like everybody has access to the internet on a home computer, and many people also own smart phones so their access to the internet is virtually constant. Not to mention the fact that the majority of people are part of one or more social networking sites like Facebook or Twitter. Considering the wealth of information available to anyone who can access the internet and the fact that interesting information somebody comes across can very easily be shown to others using social networking sites, it seems that the average person today has much more information than they know what to do with, not less.
Included in the information available to the average person is medical information. Websites like WebMD or the website of the Mayo Clinic make it easy for the average person to become relatively well-informed about their own healthcare. If a person has a specific problem and needs to see a specialist, they have the option of ignoring their physician’s suggestions (if for whatever reason, they are not satisfied with those suggestions) and using Google to look up who is the most reputable and trusted specialist in a given field.
For all of these reasons, it surprises me to read that you believe that it is difficult for a patient to receive enough information to make an informed decision. Even if a physician is not being forthcoming about the variety of options available to a patient or what the risks are for a given procedure, all of that information is still very readily available to a patient. If a patient has done their own research and disagrees with what a physician has proposed as the best course of action, the physician will either relent or the patient will find another physician. It seems to me that the focus should not be on physicians making information available to patients, but rather that patients need to be made aware that there is a wealth of information available to them if they take the time to look.
WebMD has suffered issues of conflict of interest. And any site with advertisements is banned from my center.
We all admire the Mayo Clinic but some of their resources are press releases that serve to drum up business. It is a good source but not definitve. Go to a Chevy dealer and ask what they think of Honda…you know what the answer will be.
Dr. Kussin, many of the points you and Elias have made regarding patient empowerment in terms of developing a sense of health literacy are indeed paramount to the arrival of an informed decision during a medical consultation. However, for all the knowledge a patient can accrue, research or otherwise, I am wondering if the problem, or fix for that matter, to lopsided nature of the physician-patient interaction lies more within the medical profession itself rather than a gap in patient literacy.
Much as you said, a medical decision should ultimately be reflective of patient specific values rather than a “one size fit all” model. However with the rapid adoption of EMRs, a physician’s actions and diagnoses during consultations are becoming largely data driven. An interesting publication (Patel et. al, linked below) highlights the disparity inherent in patient-physician interviews, as being one centered on a fundamental difference in thinking between the two parties. Specifically, a physician concerns him/herself with a physiological disease model- where a patient’s symptoms are cross-referenced along known, diagnosable medical conditions. This is at odds with the patient’s “illness” model, which focuses more on a narrative based perspective related to how said ailment effects everyday life. Ultimately, this data driven approach, on the part of the physician, can place many constraints on the path towards a truly effective diagnosis if it downplays many crucial elements within the patient narrative and, by association, patient preference. This becomes especially important in the realm of patient history, were much of the information related to personalized patient care can be lost in the cryptic, data driven nature of EMRs- records prepared by physicians themselves.
This leads to my main point, for as much as a patient can develop his/her sense of health literacy, is it enough to prevent a physician from applying a narrowed, data based model to an ailment? As you said yourself, physicians are often inclined to disregard patient preference. If a patient empowers himself with a greater scope of engagement, could that not deter practitioners even more from deluging various options, especially in life-saving situations, in fear of further interference? I am not trying to say patients should not strive to become informed medical consumers, for it is an obvious necessity in any patient-physician relationship. However, I am curious to your opinion on how the medical profession as a whole can be trained place to place a more esteemed value on patient specific inclinations rather than practitioner specific knowledge, and data driven disease modeling.
For your interest, Patel et al.(2002):http://www.sciencedirect.com/science/article/pii/S1532046402000023
Thank you for your thoughtful reply and the link.
First, you are sooo right. EHR is a boilerplate, one size fits all document. You can no longer even get in a chief complaint that is relevant to the patient. These reports are so laden with everything that happened during the visit (except the actual encounter), that reading it becomes hazardous because of the chance of missing the few things that actually may be important.
Anyone doing advocacy or Shared Decision will be quick to admit that the first, main and most stuborn obstacle are doctors. That’s right, as I hang my head in collegial shame. Doctors know that the more patients know about a purely elective procedure (the majority of what we do for folks), the less likely the patient will agree.
Second, when it’s a choice between the latest and the greatest vs the tried and true (in other words the risky & expensive vs the cheaper and safer) the patient goes with the tried and true. This has been documented in the literature for a while. Note robotics as an example. Yes, smaller scar, quicker stay but much more expensive and actually never shown to be safer or to cut complications.
So there is no time, space, money or will to engage in true shared decision making. Doctors want, like and will do what they were trained to do, like to do, get paid to do and think they are the best able to do. Goodbye choice. Goodbye arguments and Goodbye shared decisions. Doctors are being burned out and bought out and neither is conducive to patient centered care. I am of the feeling that this is something that needs to be done off site, at home or with professinals (need not be MDs). Doctors of this generation will not be the purveyors of shared decision tools. A new generation may
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