Contributor: Geri Lynn Baumblatt – Executive Director of Patient Engagement
Hemodialysis. Opioids. Blood Transfusion. Statins. Transplant. Surgery. Immunomodulators.
The list could go on but the overarching question we face is: when are these options too much or too little treatment?
When are medications like statins and opioids truly beneficial? And where does the trade-off between benefits and side effects drop off for an individual? Clearly, helping people understand their condition, the treatment, the tradeoffs and so on can lead to more appropriate utilization of care with improved outcomes.
This is easier said than done.
As Gary Schwitzer wrote, people are barraged with media messages that are hard to filter and often misleading, while Bruce Lambert described how the combination of low health literacy, complexity and fragmentation of healthcare information makes it increasingly difficult to make good care decisions. Similarly, Lygeia Ricciardi shared her own personal challenges trying to understand health coverage despite having extensive experience with health policy.
So what can we do?
Beccah Rothschild of Consumer Reports explained how national campaigns like Choosing Wisely offer free resources to help people decide whether a screening is right for them. Expert Patient or ePatient, Casey Quinlan shared her own tips for being a savvy patient while Renata Schiavo explained how participatory planning is another available tool to help address the health literacy needs of vulnerable populations. Related, health writer Emily Azari theorized on how a system built on everyday language might offer a more humane experience and lead to more appropriate use of preventive care with less reliance on Emergency Room visits. Insights like these are good starting points for devising applicable strategies.
Paul Barr discussed how something that seems as straightforward as a blood transfusion may often be overtreatment. The average person is not equipped to know to ask whether a transfusion is truly needed at the time of treatment.
Looking from the provider perspective, clinicians don’t know how quickly or severely conditions like Crohn’s may progress. Dr. Corey Siegel asks: ‘In those cases, what is “just right” treatment?’ Educating patients about their disease and options and working with them to make these decisions is essential.
Health Literacy and Under-utilization
Under-treatment and under-utilization is also a serious problem. Karen Mulvihill explains how common misconceptions about palliative care results in many people not taking advantage of the opportunities available to them to improve their quality of life. I also looked at the need for education and candor to improve utilization. When we help people with conditions like end stage renal disease fully understand their health while also being candid about their prognosis, they’re more likely to take advantage of options like hospice care.
But educating patients about these complex issues shouldn’t happen right before it’s time for a decision. As Angie Newman says in her piece on dialysis, “If conversations around treatment options start early enough, there’s plenty of time to discuss things over weeks and months.” Kevin Fowler looked at the next phase of renal disease and why kidney transplant outcomes aren’t better in the United States. He also included one of the things that we all know we can do better which is “education and counseling about immunosuppressant medications should be a continual process rather than a 10 minute discussion while being discharged from the hospital.”
Whether it is immunosuppressants, pain medication or statins, education and appropriate use are practices that overlap constantly. Elizabeth Rankin analyzed how patients need to be better educated on what side effects to watch for, or the medication itself can become the problem. ER physician Shannon Toohey and RN Anne Sullivan found that whether in the ER or recovering from surgery, many people fear pain medications, even for short-term use. Addiction and abuse are serious problems but helping people understand the benefits for acute pain and how to safely taper off of these medications can improve recovery.
Pain and Its’ Relationship to Over- and Under-Treatment.
Chronic lower back pain is often a poster child for this issue. People are desperate to be free of chronic pain but helping people understand pain management and how to effectively communicate about their pain is its own challenge.
Amy Bucher’s insightful piece discussed how teaching people a wider vocabulary to describe their pain may help manage it and reduce distress. Gonzalo Bacigalupe explained that because treating chronic pain requires subjective assessment and attention to each patient’s context, compassionate listening is essential to address the stigmas patients feel and for creating a good palliative plan. Pain expert Judith Paice provided practical tips on how people can describe the location, intensity, and quality of their pain, so they can help their team optimize their pain management.
Diana Dilger and patient, Kerry O’Connell, both examined the challenges of objectively evaluating the very subjective experience of pain especially while in the midst of it occuring. Looking at assumptions about meaning of the numbers on the most commonly used pain scale, or complications related to notion of “pushing through the pain”, O’Connell shared a personal anecdote of his recovery in physical therapy and growing to understand it is okay to have pain limitations.
And that brings us to the close of Health Literacy month….until next year.
Any topics we missed? Anything you would like to hear more about during next year’s Health Literacy Month? Share thoughts and feedback in the comments section!
Geri Lynn Baumblatt is the Executive Director of Patient Engagement at Emmi Solutions. She regularly speaks at events like EACH, SMDM, the Institute for Healthcare Advancement and The Cleveland Clinic Patient Experience Summit. She’s serves on health literacy, shared decision making, and patient experience panels and journals for organizations like AHRQ, The Association for Patient Experience, and the Center for Plain Language. You can follow her on Twitter at @GeriLynn.