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Patient Engagement Tip of the Month

Geri Lynn Baumblatt, MAGeri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn


Showing all Blog Posts with tag: patient education View All Blog Posts
Posted: Monday, March 04, 2019

More Than a Nuisance: Addressing Post-op Depression as an Essential Part of Recovery & Participation

By Geri Lynn Baumblatt
Recently, a friend had a minor surgery. Once he was safely home, he was surprised that he burst into tears. This was transient, but that’s not always the case. 
 
Over the past year as I’ve talked with people about a variety of procedures, and one story repeated: even when people were looking forward to something like a joint replacement so they could be more active again, they were often confounded to find themselves depressed in the days, weeks, and even months after surgery. As one woman told me, “I was relieved to finally have a hysterectomy to stop my bleeding. I definitely didn’t want to have more kids. But afterward, I was seriously depressed, and even had suicidal thoughts. I couldn’t understand why. But I felt like I was going crazy.” 



We know it’s normal for people to feel anxious before surgery, but do we help them understand that some people experience depression afterward? 
 
People expect pain and other challenges during recovery, but for those who also experience depression, not knowing this can happen creates confusion, embarrassment, and isolation.
 
Depression has been documented after many procedures coronary artery bypass graft, joint replacement, bariatric surgery, colon surgery. While it may be more common after certain procedures, there’s a risk with any surgery. And getting comfortable with identifying and addressing it can only improve patient experiences, engagement and outcomes.
 
Many factors may contribute: the body has been through a trauma (even if a planned trauma), effects of anesthesia, a post-op let-down effect, opioids, poor sleep, and depression or anxiety before surgery.
 
Unfortunately, not knowing it occurs makes it less likely people will reach out for help when they experience it. And:
  • This makes it much harder for them to participate in their recovery and rehab.
  • It lowers their threshold for pain, and can create a pain-depression feedback loop.
  • It increases morbidity and mortality.[1, 2]
Get out ahead of and behind it:
  • Studies recommend screening everyone for depression before procedures. This could also be used as an opportunity to both broach the topic with people and normalize it. [3]
  • Educate patients and family caregivers about post-op depression so they can recognize it, report it, and put it in perspective.
  • Help people understand what happens during surgery and set realistic expectations about recovery. Knowing what to expect reduces anxiety and gives people a sense of control. And less anxiety before surgery may mean less afterward.
  • Screen for depression during follow-up visits and calls. 
People can only participate in their care when they have energy; unfortunately, depression robs them of this. And including it as part of patient and family education can help people identify it, destigmatize it, and address it.  
 
 

Catch up with Geri this Spring at:

 
1. Guerini F, Morghen S, Lucchi E, Bellelli G, Trabucchi M. Depressive symptoms and one year mortality among elderly patients discharged from a rehabilitation ward after orthopaedic surgery of the lower limbs. Behav Neurol. 2010;23:117–21. doi: 10.1155/2010/365341. [PMC free article][PubMed] 
 
2. Thombs BD, de Jonge P, Coyne JC, Whooley MA, Frasure-Smith N, Mitchell AJ, et al. Depression screening and patient outcomes in cardiovascular care: a systematic review. JAMA. 2008;300:2161–71. doi: 10.1001/jama.2008.667. 
 
3. Ghoneim, M. M., & O'Hara, M. W. (2016). Depression and postoperative complications: an overview. BMC surgery16, 5. doi:10.1186/s12893-016-0120-y 



Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn
 
 

Tags: patient engagement, communication, patient education, expectations, experience, patient
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Posted: Wednesday, January 02, 2019

Behind Worry Lines: Anticipating Patient Concerns

By Geri Lynn Baumblatt MA
“Will a colonoscopy hurt if I have a hemorrhoid?”
 
“Will a hip replacement make it possible for me to have sex again without pain?”
 
“What happens to the space where my uterus was?”
After reading a brief description of how organs in the body shift to fill in the space, the woman (who had a hysterectomy many months ago) was thrilled. “No one explained that to me.” she said. “And it’s really been bothering me. This puts my mind at ease.”

BehindWorry.jpg

As much as we encourage people to prepare questions, they know there’s limited time. And they feel like questions about things like scars will come off as vain, or they’re embarrassed to ask questions about things like bowel movements or sex. Sometimes just knowing the answer is reassuring. Other times, issues like hip pain during sex is one of their main reasons for having a procedure. In fact, most people want more info about sex after hip replacement.
 
Even confident people who interview scientists for a living don’t feel comfortable asking questions when they’re in the patient’s seat. On an episode of the podcast Hidden Brain, Alan Alda describes being flummoxed and afraid to ask questions about oral surgery he’s about to have. It ends up affecting his smile, something he wished he’d understood as an actor.
 
While we can’t anticipate all questions, we can anticipate many of them. And this does a few things:
  • It normalizes asking uncomfortable questions. If you bring up questions about sex, hemorrhoids, or scars, people realize these must be common questions others have. It puts them at ease, and they feel more comfortable asking other questions.
  • It lets them know you care about them and their concerns. They’re often incredibly grateful. It builds the relationship and can foster more intimacy.
  • It can make the conversation more efficient – people don’t spend time dancing around their questions, building up courage, and figuring out how to broach a topic.
  • It builds trust. When people see their caregivers get it and know what concerns them, they’re more likely to trust other information.  
  • When you answer questions up front, they not hanging over people. So this can make it easier for them to focus on the rest of the conversation.
How do you learn about and capture patient and family concerns?
If you haven’t done this already, try it, see what you learn, and then notice how integrating it into conversations changes them.


Baumblatt1.jpg
Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

 
 

Tags: communication, patient education, expectations, engagement, patient
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Posted: Monday, August 06, 2018

Making it Click

By Geri Lynn Baumblatt, MA
I spend a lot of time in hospitals, but it’s not where I was planning to spend Memorial Day. An older relative hit her head ad broke a couple of ribs – and so there we were.
 
I sat in the room as a nurse explained how and when to use the incentive spirometer to prevent pneumonia. Then something simple, yet amazing happened. He took an extra minute to explain that the pain of the broken ribs would prevent her from taking full breaths. And how using the spirometer to take deep breaths in would expand more of her lungs. That way, those small air sacs in her lungs wouldn’t collapse, fill with fluid, and get infected.
 
It was like hearing the last puzzle piece snap into place.
 
She got it, she understood the importance of the deep breaths, how her participation is what would make the difference -- and she was on it. She even started to explain it to the doctor when he came by.


 
We often THINK we’re connecting the dots for people. But are we giving them what they need?
 
Is it enough to tell people an incentive spirometer will prevent pneumonia? Probably not. I don’t think it’s about giving a full A&P lecture – but enough information to give people that insight into why and how – so their brain gets it.
 
I’ve been working with patients and family caregivers to ensure they understand what they can do before and after surgeries (like joint replacement) to recover well:
 
  • Get up and walk
  • Stop using nicotine in the weeks before and after surgery
  • Avoid opioids

 
Obviously, people want to have a smooth recovery. And I kept explaining one of the reasons these things help with healing are because they improve blood flow. But most people were still a bit stymied. They think of their bones as needing calcium, but not blood. It seems like a different system. It just wasn’t clicking. So starting with a little more on how the bones need blood put that extra piece in place so it made sense.
 
People were surprised and confused by the recommendation to get a dental checkup before joint replacement surgery. Telling people that gum disease or things in their mouth could lead to an infection in a hip or knee joint didn’t resonate. But explaining that any bacteria in their mouth could travel through their blood to their new joint helped it come together.
 
Are there best practices or instructions people rarely follow?  
If so, take a step back and ask why it isn’t clicking for them. What’s missing in the explanation to them that we often take for granted? We forget what it’s like not to know the why or how of so many things we ask people to do.
 
Share your insights where you’ve seen it click for patients and families.
 

 



Geri Lynn Baumblatt MA,
For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn
 


Tags: patient engagement, communication, patient education, expectations, experience, healthcare
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Posted: Tuesday, June 05, 2018

Find Out What I Know About Me: Improving Diagnosis through Patient Partnerships

By Geri Lynn Baumblatt MA and David Andrews


David Andrews

David’s Story

22 years ago I experienced a surprising weakness in my legs. At first, I thought it was a back problem, but it turned out to be neurological. The neurologist said he would have to do some research to figure out exactly what it was. But beyond my immediate symptoms and my parent’s medical history, he didn’t really ask me many questions.

 

I tried to figure out my own diagnosis based on my symptoms, history, and family history. Many of the possibilities were genetic, so family history was important. Association sites for specific diseases are usually helpful, but I didn’t know what I had. So I sought out medical websites intended for physicians. While it’s written for physicians, I could understand enough to make good use of the articles.

 

One possibility was something called: Lytico-Bodig. It’s only found only on Guam. But I had spent a year and a half on Guam in my youth, where my father was the acting head of a new teacher’s college. However, Lytico-Bodig was confined to one village and was only acquired from the food they ate which was found to contain a neurotoxin. So even though I had been to that village many times, I had never eaten their food. I told my neurologist about Guam. But he just said he’d have to research, we’d have to rule it out, it and didn’t ask me more about it.

 

Based on my family history and the timing and circumstances of my first symptoms, I thought I probably had something called: CIDP (a rare autoimmune peripheral neuropathy). There were 3 categories of treatments. And based on effectiveness research and side effects data, I had some thoughts on which treatment I’d prefer.

 

At our next meeting I told the neurologist my thoughts on CIDP.  He said, “No, no, there are hundreds of things that can cause your symptoms and we have to eliminate all of them.”  For the next several months that’s exactly what he did -- including testing for many conditions a second time.

 

I was referred to another neurologist with more expertise in my type of problem for a second opinion. He explained that some of the diagnostic tests can vary considerably depending on who does them. So he also repeated many of the tests, which took 2 more months. He added one (a biopsy of a nerve in the foot). And that biopsy confirmed my suspicion: that it was CIDP. So I finally began the treatment.

 

Unfortunately, the treatment only slows the progression of CIDP, it doesn’t reverse or treat existing symptoms. So the slow time to treat was time I couldn’t make up.

 

Of course, I could have been wrong -- patients often are.  But the physicians made little effort to learn what I knew about me.

 

How can we make patients and family members more effective contributors to the diagnostic team?

In David’s case -- there were clues that could have saved time and expense in reaching a diagnosis:

•       Family history beyond just his parents

•       Potentially relevant behaviors or trips abroad

•       The pattern of onset of symptoms

•       Major stressors in the weeks and months before onset

 

David tried to volunteer some of this information. And he was both motivated and able to make his way through some of the medical literature. But even as an engaged patient, he felt dismissed.  As though he should wait on the sidelines while tests were run.

 

Of course, there’s a continuum of patients: some want to show up and have the doctor figure out the problem and fix it. Others feel sure they know the problem and get frustrated when the doctor doesn’t seem interested in what they know. Regardless of where people are on the continuum, everyone needs to know their knowledge and participation is valuable and could contain important clues:

     What do you think might have caused this problem?

     What do you think you have?

     Did anything change in your diet, environment, or life before this started?

     Other than physical symptoms, has anything else changed?


 

How do you find out what your patients know about themselves that they don’t think to tell you?

Patients have critical information that can contribute to a more efficient and accurate diagnosis. The health care team’s can draw the patient and family into an active role and make sure they know and feel like part of the diagnostic team. Diagnosis can improve, be more timely, and everyone will feel a greater satisfaction that comes with a team working together.

 

Share your diagnostic success stories as you’ve partnered with patients to sleuth out what they have.

 


Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn
 

David Andrews has been a patient advisor for over 13 years: the first 10+ with Medical College of Georgia (now Augusta University Medical Center) and the last 6+ working with many regional and national healthcare organizations.  He’s currently co-chair of The Beryl Institute Global PFAC.  He has a long, varied and colorful medical history including physicians not interested in what he knows about himself, his symptoms and history. @dandrews324

Tags: employee engagement, patient education, experience, listening, patient
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Posted: Wednesday, April 04, 2018

I'm not gonna lie to you Marge...What do we not tell patients and families?

By Geri Lynn Baumblatt

Geri Lynn Baumblatt MA

It was Valentine’s day and I was at a party. The last few weeks things were good: my dad hadn’t been in and out of the hospital or ER. He was even doing well with his physical therapy and walking laps around the main floor of the house.
 
Around 9pm, my cell rang.
It was my mom calling to tell me dad broke his hip. She was with him in the ER now, but I shouldn’t worry or make the drive home right away. She was surprised when I became upset. She reminded me she’d  broken her hip a couple years earlier and recovered fine.
 
I explained that this same event for dad was different. His age and existing health issues this made it much more likely we could lose him in the next year and a half.
 
She said, “I’m so glad you told me. I had no idea.”
 
I could tell it changed the way my mom approached the situation: she worked hard to get him moving again and try to keep him out of the hospital. She was grateful to know there might be a real limit to the time we had left with him. I still wonder:
 
If I hadn’t told my mom about what a hip fracture meant for his life expectancy, would anyone have explained it?
 
Patients and families can engage better when they know the stakes.
Because clinicians and others on the healthcare team understand the meaning of a new event or diagnosis, it’s easy to forget patients and families often don’t. What does the trajectory or progression of their condition means for them? How many people with diabetes understand it’s not just chronic, but progressive?
 
Other times it’s easier to say nothing.
In my family, when someone won’t say what’s going on, we often quote a line from the Simpsons. Marge catches Homer inexplicably hauling a bunch of bowling balls and asks what’s going on, he replies:
 
“I’m not gonna lie to you Marge…”  and walks out, saying no more.
 
 
(From "Homer vs. the Eighteenth Amendment”, Season 8 of The Simpsons).
 
But people can’t connect dots they don’t know are there. I remember trying to figure out what to say when focus group participants with stage 3 kidney disease told us they weren’t getting worse and didn’t need to think about treatment options like transplant, dialysis, or medical management.
 
This wasn’t an outlier group.
Research done with people with advanced chronic kidney disease (CKD) found that for many, their first visit with a nephrologist was the first time they were told they had CKD. Or if they had been told, they didn’t understand it as serious news at the time — so they were often shocked by their diagnosis.1
 
The study also found nephrologists struggle to explain this complex illness and avoid talking about the future  Another study found factors like prognostic uncertainty, wanting to instill hope, and worries about emotional backlash impacted discussions about conservative management for older CKD patients.2
 
On the patient side, people want information so they can make plans and make informed treatment decisions. Related studies found many older CKD patients are never given a prognosis. Unfortunately, many elderly CKD patients then don’t engage in advance care planning.3
 
This happens across healthcare. It may be more challenging with conditions like CKD — since its a silent condition, people don’t have context for it and often don’t react to a CKD  diagnosis (in good and bad ways) the same way as they do to something like a cancer diagnosis.
 
How can we ensure people understand what events, diagnoses and prognosis mean for them or their family member so they can better engage in their care?
 
Look for Disconnects
Look for places where there are disconnects or “non-adherence.” Is there something people frequently don’t do or keep doing?  It’s often a sign we’re taking some key piece of knowledge or understanding for granted.
 
Repeat the Message
Especially if it’s a new diagnosis, emotionally people may not take it in the first time, even when it’s explained well with empathy. How do your hospital or office follow-up with people afterward to ensure their family caregiver understands? How do you ensure the message is repeated when people come back in for any follow up?
 
Peer Support
People who have gone through or are starting to deal with the same thing can also help  people understand the situation and learn to cope with it. Connecting people with others can help them wrap their brain around things.
 
How do you ensure candor and understanding? Share your best practices.


Catch up with Geri
 
April 9-10 at the Lown Conference in DC
 
April 17:
•   Catch her in a panel on family caregivers and care transitions with MaryAnne Sterling, Danny vanLeeuwen, and Amy Cain at the Beryl Conference in Chicago.
•   Also on April 17: join Geri, MaryAnne and Danny for the Chicago Participatory Medicine Reception in the Living Room at the Chicago Hyatt: 
https://www.eventbrite.com/e/chicago-participatory-medicine-reception-tickets-44352929807



1. Schell JO, Patel UD, Steinhauser KE, Ammarell N, Tulsky JA. Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study. American journal of kidney diseases. 2012;59(4):495-503. doi:10.1053/j.ajkd.2011.11.023.
2. Ladin, K, Pandya, R., Kannam, A, Loke, R, Oskou, T, Perrone, RD, Meyer, KB, Weiner, DE, Wong, JB. Discussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists. American journal of kidney diseases. Published online: 3 February, 2018, doi: 10.1053/j.ajkd.2017.11.011
3. Ladin, K., Buttafarro, K., Hahn, E. Koch-Weser, S. Weiner, DE. “End-of-Life Care? I’m not Going to Worry About That Yet.” Health Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients. The Gerontologist, Volume 58, Issue 2, 19 March 2018, Pages 290–299, doi: 10.1093/geront/gnw267

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

 

Tags: patient engagement, communication, family caregiver, patient education, patient
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Posted: Wednesday, June 14, 2017

When Side Effects Get in the Way

By By Geri Lynn Baumblatt & Mia DeFino

Mia DeFino

Patients, clinicians, and healthcare organizations all want people to feel better so they can live their lives to the fullest. Unfortunately, the side effects of treatment can get in the way.
 
Mia’s Story: 5 meds, lots of side Effects
When first diagnosed with complex regional pain syndrome (CRPS) Mia’s physiatrist prescribed five medications. Not surprisingly, it was confusing which medication was supposed to help with what symptoms. By the time Mia came back the following week she was more miserable: agitated and unable to sleep, she had a rash on her face, and was sick to her stomach.
 
Turns out, she was sensitive to a lot of medications. Although she wanted to be a “good” patient, she couldn’t keep taking the meds. But her doctor was hesitant to make any changes and didn’t offer alternatives. Mia left feeling scared, frustrated and like the side effects she experienced weren’t being taken seriously.
 
Fast forward 3 years:
Mia was diagnosed with chronic migraines. She got relief from medication, yet it also made her dizzy, nauseous, and tired. This time the side effects conversation was different. Her neurologist worked with her through many rounds of medications and figured out if she took them as needed just on really bad days it helped her avoid the side effects, while still providing pain relief.
 
Geri’s story: More than a nuisance
As a family caregiver, Geri had a similar experience when medications her dad was on in the last years of his life caused his skin to thin and itch.The itching drove him crazy and kept him and those taking care of him from getting decent sleep. As a family caregiver, it was frightening to scratch his back, hoping to give him relief but not tear his fragile skin. When the family brought up the itching with his team, it was discussed as more of a nuisance -- the cost of treating his conditions.
 
Side effects are challenging, especially when patients take more than one medication. But even with a single medication one study that looked at statin side effects, found that 87% of patients reported telling their physician about side effects, and unfortunately physicians often rejected a possible connection to the medication. What would you do? Keep taking the medication ...or become “non-adherent”?
 
Changing the Conversation
It doesn’t take much to change the tone of the conversation and affirm a symptom may be due to a medication and that it’s a real issue. Even when complaints don’t fit into documented side effects, if we want people to engage in their plan of care, working this out can make all the difference to their peace of mind, quality of life (QOL), and participation. Letting people know you’ll work with them to find the right treatment where their QOL is improved builds trust.
 
Patients can also report side effects to the FDA on MedWatch. This can also help people know they’re contributing to a better understanding of side effects for everyone.
 
People want to feel better and it’s hard when treatment makes them feel worse or causes a new problem. People don’t like to challenge their care team or seem like complainers, so by the time they tell you about a side effect, it’s probably really bothering them.

Mia’s story: another 3 years later
Mia found that changes to her diet and lifestyle could help minimize the number of medications she needs to take. At Mia’s first appointment with her new primary care physician, one of the first things they talked about very directly is: Side effects. As Mia explains: I shouldn’t have to experience more symptoms to feel “better.”

Mia DeFino, M.S. Mia has personal experience with chronic diseases and managing her health with multiple healthcare providers, recognizing the need for translating complex ideas in medicine and healthcare for multiple audiences. She supports people dealing with complex chronic diseases through finding physicians and resources in their area. She’s an independent medical and science writer in Chicago www.miadefino.com. @mia_defino

Tags: communication, personal healthcare, family caregiver, empathy, pain management, patient education, experience, healthcare
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Posted: Monday, March 20, 2017

Empowering Patients with a Common Language

By By Geri Lynn Baumblatt & Liz Salmi
 








Just one week after her 29th birthday Liz Salmi suffered a grand mal seizure and was
rushed to the ER. A CT scan of her brain showed a large mass, and after a nine-hour brain surgery she was diagnosed with a gemistocytic astrocytoma -- a slow growing, but malignant brain tumor with a high rate of recurrence.
 
And recur it did. 

Six months after Salmi’s first surgery her tumor grew back sending her into a whirlwind of treatments over the next two years, including a second brain surgery, struggles with seizures, a rigorous schedule of physical and occupational therapy, and 24 months of chemotherapy.
 
Fortunately, Salmi received excellent care through her neuro-oncology nurse practitioner.


 
“I used to refer to her as ‘Super Awesome Nurse’ because she handled my nausea, headaches, and constipation -- all the side effects of treatment,” remembered Salmi. “She would field my daily calls and emails, tweaking and adjusting medications or suggesting simple life hacks to help me through what I was feeling.”
 
But Salmi never knew the kind of care she was receiving had a name until five years after she completed treatment and started working for a healthcare nonprofit advocating for access to palliative care for all people facing serious illness.
 
“After I took the job it took a few months for me to realize I am a person who received palliative care,” said Salmi. “At the time, I assumed the care was the result of me being lucky enough to have been paired with an amazing NP (which could still be true); but now I know the name for it is palliative care.”
 
Why did Super Awesome Nurse never tell Liz she was receiving palliative care? We asked her!
 
“While I, as the healthcare provider, may have viewed much of the care that was being rendered as palliative in nature, not all patients are ready or willing to consider that most types of brain tumor care is palliative,” said Mady Stovall, NP, former neuro-oncology nurse practitioner and current PhD student at Oregon Health and Science University.
Avoiding the term “palliative” initially is understandable. After all, there’s a lot of confusion between palliative care and hospice. And no one wants to cause panic that a condition is more serious or has suddenly become more serious.
 
“The perception in cancer care is that palliative care is often (and inappropriately) equated with hospice care,” explained Stovall. “Sadly, this misconception prevents many patients, families, and even healthcare providers from being able to capitalize on the expertise and resources of palliative care providers and programs. “
 
However, if Salmi had changed health systems or had to find a new provider, she would not have had the words to translate the care provided by this “super awesome” nurse to make sure it continued or was re-initiated as needed. She didn’t have the language to ask for that care and advocate for herself.
 
“Having coordinated palliative care was crucial to my quality of life because my brain tumor was causing a lot of seizure activity,” explained Salmi. “I tried seven different anti-epileptic drugs (AEDs) over five years to finally land at the right combination of medication that worked for me. Seizures are scary and make you feel as if you don’t have control over your own body. That’s why palliative care is essential; these providers listen to your concerns and fears and make sure your medical as well as emotional needs are addressed.”

Giving People Language for Self-Advocacy
While we shouldn’t overwhelm patients with clinical language, helping them understand what things like palliative care ARE and ARE NOT improves their ability to advocate for themselves.
In fact, it was only after her recurrence that Salmi learned about oncology social workers. Had she known about this role, she would have asked for it when going through surgery and treatment for her initial tumor.
Not everyone is going to become an expert patient in health communications, but educating patients and families as they get and make decisions about care can help them tell us what is most important to them.

*As an additional note we are proud to announce that Liz and Geri will be part of a panel at Stanford Medicine X on advance care planning. Joining them will be palliative physician Dr. Michael Fratkin, researcher Rebecca Sudore, and MD/JD: Dr. Aretha Delight Davis.  

Liz Salmi is a curious person-turned citizen scientist who turned her brain cancer diagnosis into an open source chronicle of the patient experience. Today, her blog TheLizArmy.com receives over than 30,000 visits each year. Her interests include patient-driven research, the quantified self, open source health data, and neuroscience. When she's not blogging, Liz is a patient advocate for OpenNotes on national movement that encourages health care professionals to share the notes they write with the patients they care for, with the goal of improving the quality and safety of care. @TheLizArmy

Tags: patient engagement, personal healthcare, empathy, health literacy, patient education, engagement, experience, healthcare, listening
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Posted: Tuesday, December 20, 2016

The Expectation/Experience Gap

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Co-author: Carly Thanhouser

Even though clinicians have great insights, if they haven’t gone through it, there’s only a partial understanding of the lived realities. Interestingly, as patients become more and more active in their care, they have higher expectations of the care that they will receive.  >>>


Tags: patient engagement, empathy, patient education, expectations
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Posted: Saturday, October 29, 2016

Highlights from the "Clarity is Power!" Health Literacy Month Series

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The end goal of health literacy is to empower patients, families, communities and clinicians with clarity and confidence to engage in care. Here are just a few highlights from the Clarity is Power series. 
See more great articles from the 2016 Health Literacy Month Series.
 


Tags: shared decision making, family caregiver, health literacy, patient education
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Posted: Friday, September 30, 2016

A Clear Path to Better Recovery

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By Emily Azari with Dr. Elizabeth Wick

This article is a preview of Emmi's 7th Annual Health Literacy Blog Series: Clarity is Power! Clarity and effective patient communication isn’t about “getting patients to follow through.” Rather, it’s about fostering a partnership with the patient.  >>>

 


Tags: patient engagement, health literacy, pain management, patient education
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