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Patient Engagement Tip of the Month

Geri Lynn Baumblatt, MAGeri Lynn Baumblatt, MA, is the Executive Director of Patient Engagement at Emmi where she oversees the creation of multimedia patient engagement, education, shared decision-making, and behavior change Emmi programs and interactive phone calls. She hosts an annual October Health Literacy Month blog series for Engaging the Patient. She regularly speaks and serves on health literacy and shared decision making panels for organizations like AHRQ, the Institute for Healthcare Advancement, Health Literacy Missouri, and the Center for Plain Language. She also serves as an Editorial Board member for the Journal of Patient Experience. Emmi Solutions works with decision scientists, behavior change experts, patients, and clinicians; they draw on their research and experience to create content that helps patients engage in their care.


Showing all Blog Posts with tag: family caregiver View All Blog Posts
Posted: Wednesday, June 14, 2017

When Side Effects Get in the Way

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi

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: Tuesday, January 24, 2017

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

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi


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
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Posted: Tuesday, November 29, 2016

A Tale of 2 Daughters: Connecting the Dots for Family Caregivers

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi

Co-author: MaryAnne Sterling

Family caregivers are the front lines of healthcare and currently 90 million+ strong. Identifying and training the care partner or family caregiver is essential. However, an important piece of this puzzle is missing -- connecting family caregivers with the support they need both inside and outside of the healthcare system to effectively manage the care of their loved one. >>>


Tags: patient engagement, family caregiver
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Posted: Saturday, October 29, 2016

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

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi
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: Thursday, September 24, 2015

Time to Give Up the Car Keys?

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi

Engaging Patients & Families in Conversations about Aging & Driving

Nate O'Keefe
Co-author Nate O’Keefe (featured left) is the co-founder and CEO of Roobrik, a Durham, NC-based startup that builds online tools designed to help older adults and their families make informed care decisions. Nate has spent more than 10 years with companies including Modality, Epocrates, and AthenaHealth creating products that deliver high stakes health and care information to clinicians, students, patients, and family caregivers.


When families of aging parents ask clinicians and caregivers: “Should mom keep driving?” you know it’s a loaded question. You may feel like you’re being asked to be the bad cop. How do you make recommendations that minimize risk for your patient and other drivers and pedestrians?  How do you help families think through the trade-offs between safety and independence?
 
It can be even more difficult to broach the subject when health conditions arise that make driving riskier and you’re NOT asked about it. For most of us, driving was our first real taste of independence and it defines our ability to be productive, social, and engaged in society.  How do you steer someone down the path of cutting back or stopping while helping them understand there are alternatives (and even benefits) to giving up the keys?
 
For those of you who don’t talk with families about driving as part of your routines, or who still struggle with difficult situations, we offer three resources:
 
  1. Your clinical peers
For many patients, an office visit is not sufficient to fully evaluate driving ability, and without an accurate picture of ability, you risk having your patient either stop before they need to or continue for too long. Here’s where an occupational therapist can be your best friend. In a standalone practice or as part of a driving clinic, OTs can do functional clinical and road testing to assess ability and recommend modifications to make driving safer. Find an OT-CDRS.
 
  1. Best practices
In 2010, the AMA and NHTSA collaborated to produce the Physician's’ Guide to Assessing and Counseling Older Drivers. This free publication is extremely comprehensive and highly practical, covering assessment, rehab, medical conditions, state laws, and much more, with frequent sample scripts to use for difficult situations and conversations.
 
  1. Tools to engage patients & families
    This issue often marks the transition from doctor-patient to a doctor-patient-caregiver relationship. All of the sudden, you’re not just engaging directly with the patient but also their concerned family. After all, the family is often responsible for carrying out the decision and supporting the patient through this transition. In addition to traditional resources like the AARP, free interactive tools to assess driving ability like the one developed by Roobrik can help families assess the situation and make a plan for limiting or stopping driving.
 
Remember, this issue if often the beginning of an important transition. Driving safety presents an opportunity to start a dialogue about changing needs and to put a process in place that encourages open communication around not just health and wellness issues, but the care issues that will begin to define this new phase of life.
 
 
October is Health Literacy Month on EngagingThePatient

Hear from patients, family caregivers, clinicians, health literacy researchers, patient educators and others about the intersection of health literacy and transitions every weekday in October. Visit engagingthepatient.com to read the articles or to subscribe to the blog.
 
 
 

Tags: patient engagement, communication, family caregiver
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Posted: Thursday, May 28, 2015

From Across the Hospital Bed Boundary

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi
Touch is comforting and reassuring. In some settings it’s been shown to reduce patient anxiety and length of stay.* Yet, a strange thing happens when someone in your family is in a hospital bed. Once there, attached to machines and IV lines, despite wanting to comfort and reassure them, they seem physically out of bounds. It often seems like a hand on their shoulder or holding their hand is the only safe contact.

Despite growing up and spending a lot of time in hospitals rounding with my dad, when he was the one in the hospital I was surprised how awkward it seemed to touch him in any way.

Then, sitting there feeling fairly useless, I watched my sister-in-law (a resident at the time) come in, and with gloved hands, gently rub away the dead, flaking skin on his arms and legs. Then she rubbed his feet. It was probably the best hour of his hospital stay. He may have even forgotten he was there.

Why is it so intimidating for families to touch someone once they’re in that bed? I know I was afraid of the machines, by how delicate and friable his skin was, and by the healing wounds and scabs on his legs. I wasn’t sure what was safe.

Even at the worst moments, families are often afraid to breach the clinical boundary of the hospital bed. In the movie Love Story, Ali MacGraw, lying in bed, terrified of dying, asks Ryan O’Neal to hold her. (For a 70’s flashback, see the clip here.) He awkwardly tries to lean over and hold her from the bedside until she says, “No, really hold me.” So he finally climbs into the bed with her.

The fear of touching patients in bed plays into the fear families often have about taking patients home to care for them. If we proactively spend more time helping family members understand what’s okay, whether it’s knowing if it’s all right to rub a patient’s back or showing them how to care for wounds, we can help build their confidence to care for family members at home. Then it won’t seem like such a sudden shift from sitting by and watching care to being responsible for giving care and literally being more hands on.

And in the hospital, patients and families may feel less like they’re staring at each other across an unspoken borderline.

               
* MacIntyre, B. et al. Altern Ther Health Med. The efficacy of healing touch in coronary artery bypass surgery recovery: a randomized clinical trial. 2008 Jul-Aug;14(4):24-32. Retrieved May 23, 2015 from: http://www.ncbi.nlm.nih.gov/pubmed/18616066

Tags: family caregiver
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Posted: Tuesday, September 30, 2014

Asking Questions, Not Just Giving Information: Shared Decision Making is Relational

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi
Gonzalo BacigalupeGonzalo Bacigalupe is Professor of the Master of Science in Family Therapy Program and the PhD in Counseling Psychology, College of Education & Human Development at the University of Massachusetts Boston. He is President of the American Family Therapy Academy. Bacigalupe is co-principal investigator of a Patient-Centered Outcomes Research Institute Pilot research project: Influence and evidence: Understanding consumer choices in preventive care.


Because the benefits of cancer screening and its usefulness for a wide group of patients are uncertain and the harms may outweigh the potential benefits, doctors and patients need to engage in shared decision making (SDM). And while this sounds straightforward, it’s often challenging.
 
We’ve both been involved in developing SDM tools to guide breast and prostate cancer screening, Gonzalo with a focus on Latino patients. 
 
Most SDM research is based on the idea that patients make individual decisions. So the focus has been on understanding how patients acquire and make sense of information that’s often packed with statistical, epidemiological, and probabilistic data. And we ask how well people comprehend it. 
 
Missing from this equation is how many people operate not just as individuals but also as one person within a net of family and community relationships. Most Latino patients talk through these decisions not just with their close relatives, but also with their extended family and other significant members of their network. Decisions about prevention, diagnosis, and treatment are not just in the working of their individual minds or a cognitive process, but located in the ecology of relationships.
 
For vulnerable patients, besides having more difficulties at making sense of complex data, the question of how we explore their approach to decision making is central and requires cultural humility.
 
So what can clinicians do?
Ask about patients' social and cultural context and be curious about how they make sense of healthcare decisions. These questions are an example of how we may capture the rich context and story that may play a pivotal role in how the patient participates in the decision making process.
 
I know this is a lot of information, if you were to discuss this with a family member or friend, what would be the outcome of the conversation?
 
What other information do you need to help you make a decision you feel comfortable with?
 
How would these options affect you and your family’s day-to-day life and their ideas about you?
 
The epidemiological or probabilistic data, no matter how attentive is to the literacy level of a specific community, will be meaningless if we do not understand who and what plays a significant role in complex healthcare decisions.

Tags: communication, shared decision making, family caregiver
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Posted: Wednesday, May 28, 2014

When Caring for the Family Reduces Patient Stress

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi
What do patients experience as they drift in and out of awareness in an ICU?
 
Recently, a couple of long-term ICU patients both described how even when they weren’t fully conscious, the mood of the staff as they moved in and out of their room was still apparent to them. They could tell if people were present or smiling, and how even the one-sided conversations staff had with them were meaningful.
 
One patient also described how he had a very strong sense of his parents’ stress as they kept watch by his bed and how it reduced his stress to hear how the staff was caring for his parents.
 
It's impossible to always be “up,” but care, hospitality, and mindfulness of close family and friends may reduce patient stress, even when we think they’re not aware. After all, while everyone is worried for the patient, their worry is often for their partner and family.

Tags: patient engagement, communication, family caregiver
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Posted: Monday, April 21, 2014

Looking Out for Family Caregivers

By Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi
A hospital out west recently surveyed people with pancreatic cancer and their family caregivers about their emotional highs and lows over the course of treatment. While the graph of the patients’ emotions looked like a fairly intense rollercoaster ride, the graph of their family caregivers' emotions actually showed higher highs and lower lows.
 
To understate the obvious, family caregivers take on a lot -- not just the physical care, but the emotional stress. And, as this small survey showed, caregivers may actually experience more hope when things go well and more stress and depression when they don’t.
 
More and more hospitals have started offering caregiver classes to try to prevent burnout and help prepare people for what lies ahead. Family caregivers often don't realize what they're taking on and how it will affect their social, emotional, and even physical health. At first, it's sometimes hard to see that it can quickly become a challenge just to leave the house for a few hours to run errands or get a good night's sleep, let alone deal with any mood swings or memory or dementia issues.

These types of caregiver classes can also serve as social support and a way for them to meet others to talk with. What is your hospital doing to help prepare family caregivers so they don't end up a casualty of caregiving?

Tags: family caregiver
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