by Geri Lynn Baumblatt – Executive Director of Patient Engagement &
Diana Dilger – Senior Health Writer, Emmi Solutions

Written for the Association of Patient Experience
Patient Engagement Tip of the Month

Serious conversation about advance directivesNo one likes to bring up death. People like it even less when it’s about them. But that’s not a good reason to avoid it. It’s an important discussion, and we have a responsibility to promote these conversations so patients can have a say in what they do and don’t want.

How do you bring it up?

First, if someone isn’t seriously ill, bringing up advance directives (AD) can seem jarring and out of the blue. It can help to ease into it by saying things like, “Since everything looks good now, this would be a great time to talk about what you might want if you ever do need something and can’t speak for yourself.” Or normalize it: “It looks like you don’t have AD on file. We try to have those for everyone in case you’re ever in an accident; it’s a great safeguard.”

For people who are ill and know something could happen, it might sound more like, “We have your treatment planned for now, but let’s talk about what you may or may not want if treatment doesn’t go the way we hope.”

Then, explain how ADs are a gift to their family. If someone is in an accident or becomes unable to speak for themselves, and there aren’t ADs, it can create a lot of stress, guilt, disagreement, and confusion for their family. So getting it down in writing and alerting everyone to what they want in advance can be a big relief. It’s like leaving a guide book for their loved ones.

Address Common Concerns

People are afraid once they create ADs, they’re locked into them. Letting people know they can change them at any time if their wishes change puts people at ease.

It also helps to emphasize that putting an AD in place does not mean they’ll get less care. Instead, saying what they do and don’t want helps ensure they’ll get the care they prefer.

National Healthcare Decisions Day

April 16 is dedicated to encouraging people to discuss and document advance directives.
Check out all the events going on for National Healthcare Decisions Day.

Help everyone understand:

To help educate the public the multimedia Advance Directives Emmi program will be freely available to the public for 2 weeks, starting April 16. To learn how to watch the program, follow @emmisolutions.

Learn from Experts:

A complimentary webinar on with Dr. Ira Byock and Dr. Sheri Kittelson on:

Engaging in End of Life Decisions: How to Turn Difficult Conversations into Clinical Opportunities

11 am Central on April 16, 2015. Sign up here.

Different Communication Mediums

In healthcare, we have a few different ways to present information to patients:

  • personally (in a conversation),
  • with a hard copy (like a packet or brochure),
  • or digitally (like an app or website).

But just because one approach works for one medium doesn’t mean that it always works for the other ones. How do you know the information you present to patients will get across to them? So, here’s what you need to know about personal, hard copy, and digital communication.

Personal Communication

In the personal delivery option, the methods available are talking face–to-face or a phone call. Generally speaking, the bulk of information delivered personally uses the first method, at an in-person appointment, though phone calls carry most of the same benefits and problems. These tools (and pitfalls) at our disposal are tone of voice, word choice, and communication pace. We can also use gestures and touch. Though it’s important to be careful not to let efficiency creep in and remove all the benefits of being in the same room as someone. Moving and speaking too quickly suggests to the patient that getting to the next thing is more important than this conversation we’re currently having and can subconsciously cause them to treat the information with less importance or attention.

Hard Copy Communication

In a hard copy, we can lay information out more objectively than our voice can sometimes manage. That said, language choice matters even more here since that’s the only tool we have to convey our tone. (Think about how easily email messages are misconstrued without being able to hear the sender’s voice.)

How the information looks visually also becomes important. If one area is more condensed than another, or if the font is smaller, people tend to scan or bypass that information as it appears too congested for our brains to process quickly. On the flip side, if there’s a lot of white space on the page, and a variety of fonts, people are able to process the information quicker and more clearly, picking out the larger or bolded information first, then going back and filling in with the smaller, more condensed text.  So when laying out content for a paper or physical medium, it’s important to know your intent in order to highlight the more important pieces of information.

Digital Communication

In the digital medium, these tools (and pitfalls) combine. We can add voice to the visual, and we can allow the patient to interact with the screen. But it’s important to keep in mind that we allow can influence how they feel about themselves. A clumsy interaction can make someone feel stupid, which can translate to frustration about the technology, the person who sent it or asked them to use it, or worse, about themselves and their abilities. This can be very detrimental since the last thing you want to do is make someone feel like they cannot accomplish the goal they’re setting.

But the good news is you don’t have to pick just one form of communication. The personal delivery is great for the introduction of a topic when you can customize the delivery as you “read” the patient and their reaction. The hard copy is great to give patients a tactile, visual reminder of what’s important. Digital delivery allows for a quick, convenient way to give them follow-up information or a reminder.

Easy Reference for Communication Mediums

Here’s a breakdown of which medium is most useful for which kind of information:

 Type Strengths Weaknesses Best for:
 Personal 
  • Can customize to patient moment-to-moment
  • Can use tone and gesture to soften or emphasize impactful information
  • Time consuming/not enough time to get through all the details
  • Tone and gesture can be misinterpreted
Introduction of a new topic or update on patient’s personal concern or issue
 Hard copy 
  • Objective delivery of information
  • Can be placed in high traffic area for patient for visual cue or reminder
  • Tone and information perception can be harder to control
  • Poor design can lead to people missing important information
Simple reminders, like appointment times and short instructions for a short period of time
 Digital 
  • Convenient for patient to access at time and place of their choosing
  • Can deliver content of any length
  • Tone and information perception can be harder to control
  • Impersonal delivery for introduction of a new topic or personal concern
Follow-up information on a new topic or concern, or for reminders and updates

At Emmi, we keep these interaction styles front and center in our minds when designing our products. We know the potential shortcomings of digital and phone delivery and try to counteract them by paying careful attention to the tone and word choices in our scripts and voice over, for example, or by working closely with providers and patients to ensure our tools contain the most relevant, informative content possible to support their conversations. We also collaborate with providers to ensure our tools compliment their clinical workflows and prevent any “jumping the gun,” such as sending patients information about conditions they might not know they have.

And keep in mind, a positive interaction can delight the patient. They might feel joyously surprised when their hard work  of logging all their carbs for a whole week is met with a digital gold star, or they might be pleased to find that swiping the screen allows them to move forward to the next piece of information, just like they might expect. Creating a positive feeling within the support system of behavior change can help promote the patient’s willingness to go further, longer.

Diana Dilger

Diana Dilger

Interactions happen every day in every medium the patient encounters. So how can we work to make those interactions as positive as possible? What works for you?

patient engagement fosters good patient experienceAsk any of my friends or relatives – I am a target for freak accidents and unexplainable illnesses.

Within the last year I’ve been hit in the head with a baseball, I’ve scratched my cornea with a piece of paper, and I’ve  endured multiple endoscopies, a colonoscopy and a multitude of x-rays and scans to try and determine the source of some mysterious gastrointestinal distress. (And I know I’ve written about my hypochondriac tendencies before, but these scenarios have all, unfortunately, been very real.)

And yet, while none of these experiences were particularly enjoyable, trying to find a doctor who understood my GI struggles was especially frustrating.

  • “All of your labs are normal.”
  • “Are you eating enough?”
  • “Let’s just refer you to behavioral therapy…”

The monotonous lack of persistence made me feel completely at a loss.

You’re Not Alone Feeling Alone

There’s something to be said about finding a doctor you feel comfortable with, but another to find one that understands you. Who’s simply willing to fight for you – to fight for you to get better, and not just implement a band aid solution. Without that support, I realized fighting on your own is a lot harder, and it makes your hope for a healthy future seem near impossible.

And that feeling? That feeling of being totally misunderstood, and anxious about what the future can bring? That alone can make matters worse. As recently published in The American Journal of Medicine, “physicians who do not communicate belief in or understanding of the patients could actually cause patient symptoms to worsen.”

The study analyzed five women suffering with chronic pain, and discovered they felt unsupported by their physicians and therefore felt feelings of hopelessness, anger and desire to avoid further care. To accept their illness as their ‘new normal.’

When speaking on what this study means for future patient-provider care, lead author of the study, Maddy Greville-Harris, PhD stated, “Our work indicates that the effects of patients feeling that their doctor doesn’t believe or understand them can be damaging both emotionally and physiologically. This could lead to worsening of illness, known as the ‘nocebo response’… [Patient] expectations will undoubtedly affect the outcome, but improving communication in consultations could make a big difference to patient care.”

But what are those improvements? How can clinicians effectively communicate in ways that make patients feel understood? That reduces their anxiety about finding a cause and solution?

Three Things You Can Do To Improve Patient Experience

Well, a few things. Executive Director of Patient Engagement, Geri Lynn Baumblatt says you can start by:

  1. Acknowledging patient emotions
  2. Setting patient expectations
  3. Using plain language in conversations

Just to name a few.

Geri and Dr. Corey Siegel, Director of the Inflammatory Bowel Disease Center at Dartmouth-Hitchcock Medical Center, will be discussing how to deploy these tactics and others during a webinar this week, Friday, March 13th. If you’d like to hear more about effectively addressing patient anxiety, I encourage you to sign up and learn how these tactics have been proven to help patient-doctor communication.

In the meantime, I’ve gotten better and I’ve come to accept my aptitude for clumsiness, weird accidents and even the occasional hard to cure condition. But I’ve also realized I won’t continue to accept medical care from providers who are unwilling to fight for me, and are unwilling to help address my anxiety and make me feel understood.

And I have hunch your patients would say the same. Wouldn’t you?

Kendall Antekeir

Kendall Antekeier

Kendall Antekeier is a Content Marketing Specialist at Emmi Solutions. When she’s not creating material to help healthcare organizations understand the importance of patient engagement, she’s probably binge-watching shows on Netflix, musical theatre clips on YouTube or [remarkably] spending time with friends who put up with it. To know more about patient engagement and its effectiveness, follow @EmmiSolutions.

techdesk640wide

Many of the experiences we face as patients in the healthcare system are not user-friendly. Instead, we face an overwhelming number of barriers in a confusing system. But, there are many ways technology has made this easier and has empowered us to take a more active role in our health. We can use apps to track our calories, we can refill our prescriptions on our iPad, and we can even get on-demand access to a personal health coach. These hardly scratch the surface of how technology is changing and will continue to change our experiences with healthcare.

Not only do these solutions make our experiences with healthcare less overwhelming, they often make it easier for us to understand and engage with our health. Behind all of these innovative solutions, you will find a user experience designer — someone who has identified a problem in the world and worked to make it easier to accomplish. At the core, this is what a user-experience designer is passionate about: understanding problems people face, and finding great solutions to solve them.

When addressing some of the most difficult challenges patients face in healthcare, user experience designers consider an array of issues that patients might experience. But could we be more effective if we got this input from patients directly?

Better Tech Experience From User Input

To approach these challenges, some firms are getting patient input in new ways. IDEO, an award winning design firm based in Palo Alto, has been designing thoughtful experiences and solutions for many different sectors, especially healthcare. Beginning with the first computer mouse for Apple – now the company develops a variety of projects: from redesigning heart defibrillators and creating online birth control support networks, to designing headbands to keep us mindful. Part of their success lies in the fact that they actively seek out the advice and input of real patients. Most recently, the team acquired the valuable skills of their newest designer, 91 year old Barbara Beskind.

Barbara Beskind has been working at IDEO for 2 years; she comes in once a week on Thursdays to the Silicon Valley office, equipped with a walker and eyewear she designed herself. While in the office Barbara says she feels “30 years younger” and finally gets to live out her dream of becoming an inventor. She’s able to bring her perspective into their understanding of healthcare, and gives indispensable insight on the development of products for the aging. For Barbara’s full story, check out her coverage on USA Today and her recent story on NPR’s All Things Considered. Continue Reading »

Contributors: Geri Lynn Baumblatt – Executive Director of Patient Engagement, Emmi Solutions; Greg Berney – Senior Manager of Patient Experience, Cone Health (Originally published for the Association of Patient Experience)

Greg Berney

Greg Berney

Several months ago, a Patient Experience Manager at Cone Health was rounding with a nurse on a med/surg department. We’ll call him “James.” As James discussed different patient experience improvement tactics, he verbalized a concern with hourly rounding logs. “Each time I put my initials on that log I feel frustration with leadership because it feels like they don’t trust me.” Leaders, in turn, felt frustrated because the logs were their only way of ensuring hourly rounding was happening.

While James identified a lack of trust as his main frustration, this also articulates a greater challenge in improving the Patient Experience: ensuring our goals and how we motivate caregivers to meet those goals match. As James would tell you, there is nothing about writing his initials on a log sheet that help him provide better care at the bedside. In fact, the log sheet introduces a new goal and motivation for many caregivers – fill it out faithfully and you won’t be hassled by your boss! Hourly Rounding had become a task for James instead of a tool that to provide better care.

How can we tap into caregivers’ natural motivation, and partner with patients, to improve the patient and caregiver experiences at the same time?

At Cone Health, Hourly Rounding was re-launched with a specific focus on helping caregivers understand what’s in it for them. The entire training is around helping each nurse proactively communicate to their patients in a way that ends up reducing call lights.

The best part: patients who hit their call light less frequently tend to do so because they feel their needs are being met! Continue Reading »

Because She Remembered

Contributor: Courtney Hummel – Senior Client Services Specialist, Emmi Solutions

“It is a peculiarity of man that he can only live by looking to the future – sub specie aeternitatis. And this is his salvation in the most difficult moments of his existence, although he sometimes has to force his mind to the task.”
– Victor Frankl in Man’s Search for Meaning

Courtney Hummel

Courtney Hummel

Why do people seek medical care? The entire mindset of a person-turned-patient can be summed up in Frankl’s words. Two concepts are present here: what must be done and what is possible. Focusing on the present, however difficult the task at hand, is only imaginable because of future possibilities. Similarly, healthcare harnesses today’s capabilities and conversations to transport patients to better tomorrows. There must be a hope for a better future – one with less suffering and more happiness – for a patient to willingly submit his person for care. This happens on a daily basis, in hospitals, clinics, and all healthcare environments across the country.

For example, let’s look at a patient in chronic pain that enters a physician practice for treatment. A few words come to mind when thinking of someone in this scenario: struggle, vulnerability, weakness, but also hope, trust, and anticipation.

Walking through the waiting room, the patient carries the physical weight of his pain and the emotional weight of the accompanying depression and anxiety. Can anyone see? The child, waiting patiently upon the lap of his mother, can he sense the burden this patient feels?

The patient tells the receptionist his primary concern: pain. She doesn’t need to know about the others.

“I’ll wait to tell the doctor, or maybe not. Maybe next time. I can see if they go away on their own, though they never have before. No, I can do this. The doctor does care, and there is a way out. “

The patient waits for hundreds of seconds, feeling each one while ensuring that anyone who can see him can’t feel him counting.

Five hundred thirty one. Five hundred thirty two.

The nurse brings him to his exam room, where he tries not to start the ticking clock over. The nurse is kind as she takes his vitals, and his chit-chat putters out to cover up his angst. She also asks him why he’s here today. This is the chance. She’s cracked the door for him to finally open wide. Continue Reading »

Guest Contributor: Robert Bear

Patients with serious chronic diseases should not have to suffer needlessly, but many patients with advanced chronic kidney disease and end-stage renal disease do. They suffer, in part, because of the co-morbidities and clinical consequences of their disease. But mostly they suffer for other reasons: lacking sufficient knowledge about their disease and its history, they are afraid; finding it difficult to communicate meaningfully with their care providers, they feel alone; having to make difficult decisions they are unprepared for – including possibly choosing conservative care only – they feel anxious and bewildered; facing extraordinary lifestyle adjustments – sometimes including loss of employment and financial security – they feel vulnerable. Often, their life expectations have been upended. Many say they have lost dignity, feel a sense of hopelessness and wish for death.

Robert Bear

Robert Bear

Care providers in, and leaders of, chronic kidney failure programs want to prevent such suffering. They understand that the best way to do this is to ensure that their patients are fully engaged: knowledgeable about their disease; able to communicate openly and freely with their care providers; eager partners in joint decision-making; schooled in the principles and practice of patient self-management; accountable. However, accomplishing this is no small task. For example, before developing and executing a patient engagement action plan, administrators, staff members, physicians and patients must be trained in the requisite skills. And it is my experience as a Nephrologist and health care consultant that most of these individuals are more than fully occupied with the urgencies of the day and don’t have the time – or sometimes even the expertise – to lay the important educational foundation for change, let alone develop and execute a plan.

What to do? In Canada, established renal agencies in the provinces of British Columbia, Alberta and Ontario are discussing how best to help nephrology programs accomplish the hard work of developing and implementing patient engagement initiatives. They are talking about employing some of their resources to create a ‘Patient Engagement Toolkit’ for nephrology programs: preferred educational materials; best practices related to creation of enabling roles and structures (physician champions, patient advisors, multi-stakeholder Patient Engagement Advisory Committees); effective implementation approaches; a set of outcome measures through which progress can be tracked and reported upon (a series of potential outcome measures are detailed in the reference below); undertaking the task of ensuring that notable success stories are widely shared. This approach will avoid needing to “re-invent the wheel” for each nephrology program.

Might a similar approach be adopted in the U.S.? In 2013, the Centers for Medicare & Medicaid Services (CMS) required that each American Nephrology ‘network’ develop an initiative to enhance patient engagement. The results of these initiatives are being shared. But perhaps more can be done. In the U.S., could large health systems and/or commercial providers of dialysis services adopt the model being considered in Canada and develop a ‘Patient Engagement Toolkit’ for nephrology programs? Might this not speed the development of a more engaged population of patients with this serious chronic disease? Might this not lessen the suffering of these patients, which is our common goal?

Robert Allan Bear is a former Professor of Medicine (Nephrology) at the University of Toronto and subsequently the University of Alberta. He now works as a health care consultant. He is author of the medical novel Sorrow’s Reward, which explores, through the voices of patients, the realities of patient engagement in chronic dialysis.

Reference:
Bear RA, Stockie S: Patient engagement and patient-centered care in the management of chronic kidney disease and chronic kidney failure. Canadian Journal of Kidney Health and Disease 2014, 1:24

Follow

Get every new post delivered to your Inbox.

Join 782 other followers