	Blogs
	Patient Info

E-Newsletter

Enter your email address below to receive our monthly e-newsletter!

Patient Engagement Tip of the Month

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

Showing all Blog Posts with tag: empathy View All Blog Posts

Posted: Tuesday, August 22, 2017

Helping Patients Voice What Matters to Them: Decisions are About More Than Information

By Geri Lynn Baumblatt and Victoria Baskett

Victoria Baskett

“What do you want your quality of life to be like?”
It was a question Victoria never expected to hear from a surgeon, before engaging in a dialogue about his recommended treatment plan. In that moment, she was in control. In a vulnerable situation, she had the opportunity to be the author of her own story.

Victoria’s Story
Just a month before this conversation, I’d been rapidly intubated while still awake to secure my airway, which was closing due to an infection called Ludwig’s Angina. Maybe it was genetics, maybe it was the intubation, or both, but a tremendous amounts of scar tissue formed on my vocal cords. This left my voice sounding raspy -- like I was a chain smoker or always sick.

The recommended course of treatment was 6 months of speech and vocal therapy, followed by surgery if my voice hadn’t improved. Six months of vocal and speech therapy passed and surgery was still on the table.

My physician laid out both options for me and explained the pros and cons of each. For me, the recent memory of being intubated while awake was still fresh my mind. So, the idea of choosing to go through surgery, was frightening. While he explained that I’d be fully asleep for the surgery, he also took the time to understand my emotions. He saw that information alone wasn’t going to change my mind. And he respected my emotions, which created trust.

It helped to know that it wasn’t a limited or forced suggestion, but simply an option for my own personal quality of life. His opinion wasn't interjected, or I didn’t feel like it was. He shared his knowledge, and I had the opportunity to share my thoughts and emotions and make a choice. I feel like people can never have too much information. Knowledge is power when making a decision about your life. That said, our experiences and emotions are important.

So, I had to answer that quality of life question. What did I want? And How did I feel? I decided it wasn’t right for me.

There’s a lot of research and articles on patient reported outcomes and personalizing care leading to overall improved outcomes. I believe that personalizing care is essential. When we switch to the paradigm of person-centered care, we give individuals the ability to decide their own destiny. When you take the time to truly develop relationships with individuals, you have the opportunity to learn what’s important to them and to personalize care to fit their dreams and aspirations.

What’s in a Voice?
Two of the most common phrases I hear from strangers when they hear my now-raspy voice:

“Are you sick?”
“Oh no, you’re losing your voice!”

So, will I ever have surgery on my vocal cords? Well that’s to be determined! For one thing, I like sounding like Nora Jones -- being able to sing like her would be even better.

For me, my voice is also a reminder that I survived an obstacle I wasn’t expected to see the other side of. But more importantly, my voice is a reminder of a surgeon who put down his pen, looked me in the eyes, considered my thoughts and emotions, and let me determine my future -- a situation and dialogue I did not know or believe I would ever experience.

A Voice Lost and Gained
The experience changed my voice both literally and figuratively. I lose my voice frequently. It used to be a deterrent for me in loud situations because I couldn’t talk to people, so I just wouldn’t go to parties or events. But I talk every day for work, I do public speaking, and I interact with people daily. It causes challenges, but Throat Coat® tea and voice exercises have helped me through those challenges. But I found my patient voice, articulating and advocating for the patient experience.

The Takeaway
Patients need information, but information alone is not enough to make tough decisions. People also need to process their emotions. Luckily, Victoria didn’t have to make a now or never decision about surgery, so her anxiety about surgery didn’t cut her off from any options. But in other situations, patients may have a one-time choice where emotions about a new diagnosis or situation may overwhelm them. Research suggests clinicians can help address patient stress by discussing treatment options only after the address emotions. Otherwise, patients may not be equipped to move from learning about their condition to making a decision or taking behaviors to manage it.¹

Nunes, et al. A diagnosis of chronic kidney disease: Despite fears, patients want to know early. Clin Nephrol. 2016 Aug; 86(2): 78–86. Published online 2016 Jun 27. doi: 10.5414/CN108831

Victoria Baskett - Victoria Baskett is the Director of Patient Experience at Wayne UNC Health Care in Goldsboro, North Carolina. She is also the Founder and President of the Victoria Baskett Patient Safety Foundation that works to “Improve patient safety by educating patients and families on the importance of finding their voices.” Misdiagnosis, delayed diagnosis, and emergency surgery all led Victoria towards her mission to transform healthcare through patient and family advocacy and safety. Along with her career and non-profit, she currently serves on the North Carolina Quality Center Patient and Family Advisory Council and Board of Trustees, the Patient Safety Movement Handoff Communications Workgroup, and The Beryl Institute’s Global Patient and Family Advisory Council. @vbpatientsafety
Victoria Baskett Patient Safety Foundation (facebook)

Tags: communication, personal healthcare, shared decision making, empathy, engagement, experience, listening, patient
0 comments

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
0 comments

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
0 comments

Posted: Tuesday, January 24, 2017

Do Your Patients Know What's in it for Them? Articulating the Value of Patients First

By Frieda Wiley, PharmD, BCGP, RPh, is a board-certified, geriatric pharmacist and medical writer whose healthcare experience includes the pharmaceutical industry, community pharmacy, and managed care consulting. She has served on the editorial board for the American Association of Consultant Pharmacists, as Chair and Co-Chair of the American Pharmacists Association’s Medication Management Special Interest Group for Telehealth, and is a member of the University of Texas at Houston Consortium of Aging Committee. @Frieda_Wiley

By Geri Lynn Baumblatt, MA & Frieda Wiley, PharmD, BCGP, RPh

When Frieda first began practicing as a pharmacist in managed care, she called a patient (we’ll call her “Monica”) to conduct a review of her medications. Monica was on the verge of hanging up until Frieda asked, “Have you recently been experiencing any bleeding or bruising?”

Monica paused and said, “You know, come to think of it, my gums do bleed whenever I brush my teeth. Could one of my medications be causing that?”

Frieda knew she’d recovered from what would have been an epic patient engagement fail. Instead, she used that 15 seconds to establish credibility, value, and concern, but most importantly, to get at why a medication review was meaningful for Monica. She picked a common side effect that would instantly grab Monica’s attention. Otherwise, the call might have been seen not as a service, but a nuisance — a call to update records. Or Monica may have suspected the call was gathering information to see if her insurance should keep paying for her medication. But a “medication review” didn’t immediately sound like something that would benefit her.

Articulating Value Up Front
We often assume patients and families know why we’re asking them certain questions or to do certain things: We repeatedly ask them about pain levels, tell them to avoid salt if they have heart failure, or recommend caretakers rotate bedridden patients frequently. But the value we recognize and take for granted is often not immediately obvious to patients, and that makes it even more important that we, as provider, articulate those benefits up front.

Even when a patient is admitted and we ask them to repeat and confirm information, patients often don’t see the value. Instead, the repeated questions can seem annoying or even incompetent. But opening the conversation with, “To make sure we’re keeping you safe, I’m going to re-ask you a few questions…” can shift patients' reluctance to cooperation and trust.

How can we present ourselves as approachable?
There is no cookie-cutter approach to establishing rapport. A tactic like the side effect question can quickly engage a patient who otherwise might not see a medication review as beneficial; but there are other ways.
For example, whenever a patient mentions a hobby or activity, take a few seconds to document it. At the next visit, follow up with them about that personal detail. “Last time I saw you, you were spending a lot of time in the garden; how is it looking now?” Better yet, relate it back to their health. “Last time I saw you, you were doing a lot of gardening, but your arthritis was getting in the way. How is the garden looking? Are you able to spend more time working on it now that you started the new medication?”

Reframing this question into a more insight format kills two birds with one stone. Not only can a provider further improve patient rapport by demonstrating compassion and insight, but it creates an opportunity to develop a more open and fluid dialogue. And in a world where providers are pressed for time to connect, this can go a long way.

Tags: patient engagement, communication, family caregiver, empathy, health literacy, expectations, engagement, experience, healthcare, listening, patient
0 comments

Posted: Tuesday, December 20, 2016

The Expectation/Experience Gap

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
1 comments

Welcome

Login