When a physician’s blogpost is still getting comments and tweets 7 months after its posting, you know it has struck a chord with many in the medical field. That’s the case for Dr. Howard Luks’ “Graphic Depiction of a Common Doctor’s Dilemma.”
In it, Dr. Luks grapples with the question of how much information to share with patients about their diagnoses. Share too little, and the patient is confused; share too much and the patient is confused. How does a doc find that sweet spot of understanding?
I’ll add even more confusion to Dr. Luks’ dilemma from my own personal experience. I have elderly parents who live across the country from me. My sister (who lives close to them) tries to attend their doctors’ visits, but she works full-time and has a family, so it’s just not possible. My dad has heart issues, my mom has dementia – so often they’ll tell us the doctor has put them on a new medication, or wants another test, or suggested a specialist. We ask them why … and often the answer is, “I don’t know.”
That phrase, “I don’t know” could mean they forgot, or it could mean that they didn’t ask because they grew up in an era where authority figures were not to be questioned, or it could mean that the information they received was too complex and they didn’t understand it.
And so it was with great empathy that I read Dr. Luks’ post. Not only does this issue relate to the different levels for each patient, but their family members and caregivers, too. My sisters and I want to know more…my parents are satisfied following the doctors’ orders, no questions asked.
What’s a physician to do? How can hospitals help physicians deal with this dilemma?
In education we often discuss the concept of “scaffolding.” This refers to the instructor building a support system that helps bring a student from one level to the next. We want them to leap to an understanding of a new concept, but we know each student is going to need varying levels of support depending on her learning style, motivation, etc. Because of this, we build a “scaffolding” of support.
We might make available case studies, or articles that demonstrate the relevancy of the new concept in their lives, or data that supports the new concept, or a YouTube video of a speaker embracing or explaining the new concept.
Consider what steps we might take if hospitals were to support physicians by using this same scaffolding approach. In this way, hospitals can help build the scaffolding, and patients can use whatever supports they feel are necessary to bring them to the level of understanding they are seeking. Here are some considerations for this approach:
Immediacy and simplicity
Work with physicians’ offices to develop brief handouts for their most common diagnoses. It should include a brief description of the diagnosis, treatment options, FAQs and additional resources (see below).
To make sure you are fulfilling the call for simplicity, hire a writer who can translate physician-speak into lay person-speak; but make sure that all agree on the final language. Also, make the handout in a digital version so physicians’ offices can offer to email the hand-out to the patient or patients’ family members or caregivers, giving simple, one-click access to the links. (Make sure to abide by HIPAA regulations when distributing information on patient diagnoses.)
Start with local resources
List several resources, starting from those that are most closely affiliated with your hospital, clinic or surgery center and moving outward.
For example, if the diagnosis is cancer and you have an affiliated cancer center, help that center create a website that contains local survivor stories, detailed FAQs and even an “ask the physician a question” section where your own group of physicians are supplying the information that is most pertinent to local cases. In this way, you are building connections, and ultimately trust, between the patients, the hospital and the local physicians who will most likely be associated with their treatment.
Offer online and offline resources
The level of comfort with technology varies from patient to patient and from patient to family member, so make sure to include both online and offline sources.
If the source is offline, make sure it is easily accessible and affordable. For example, you might check out your local library’s resources so you can include some on the lists. Your hospital’s centers of excellence (wound care center, cancer center, birthing center) often have borrowing libraries, too, so make good use of their resources.
If you offer URL links to articles, consider making printed versions available upon request, and note that on the hand-out. A patient may prefer a hard copy, but their grown son or daughter may want to link to the article online.
Speak their language through popular media
Popular media speaks your patients’ language. On your handout, include URLs that link to credible media articles. They are usually written in everyday language and are edited for clarity.
Seek out nonprofit and government-supported resources
On your hand-out, provide links to government-affiliated consumer web sites. Some agencies have dedicated outreach to patients (like the National Cancer Institute). There are also numerous nonprofit agencies that have a patient-support function, like the Alzheimer’s Association’s section on “Caring for Alzheimer’s.”
Make sure your links go directly to those pages so patients don’t get frustrated by having to hunt around the sites. Avoid commercial resources which may favor certain treatments based on commercial interests. Also avoid sites that are directed to physicians and contain too much jargon.
Vet all resources for accuracy and readability
Make sure any resource you include offers current and accurate information on viable treatments that are accepted by the medical community. Avoid resources proposing risky or unproven treatments. Also avoid sources that may be accurate, but not clear because they are poorly written or contain too much medical jargon.
By working hand-in-hand with physicians, hospitals can help build better communication between patients and physicians and help provide the scaffolding patients need to understand their diagnoses and the risks and benefits of treatments.
How we help
Hive Strategies helps hospitals engage patients through social media. We don’t manage social media. Instead, we help hospitals develop an effective social media strategy and mentor them through the implementation process. Start a conversation. Email us or call us at 503-472-5512.