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The Beryl Institute Patient Experience Blog
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Opposing Natures: Honoring the Properties of Water

Posted By Tiffany Christensen, Wednesday, April 4, 2018
Updated: Tuesday, April 3, 2018

Patient activation is a behavioral concept… It is defined as 'an individual's knowledge, skill, and confidence for managing their health and health care'.
(Hibbard et al 2005).

We know from all of the literature on patient activation that there is a way to both understand and measure a patients’ readiness to manage their health and their healthcare. We also know that there are techniques, such as motivational interviewing, that can assist in moving a patient from lower activation to a higher activation. In so doing, patients and families gain knowledge skills and confidence. As a person working in the field of patient experience, I find activation work to be both inspiring and essential in operationalizing engagement. As a patient, I have experienced activation is a moving target.

Recently, I was reacquainted with my personal activation scale when I found myself feeling puny shortly before a big trip to Thailand. I had never been to Thailand, I was meeting my best friend there and I was using all of my airline miles to have the trip of a lifetime. It goes without saying that I really wanted to go so when I began feeling sick my first thought was “Noooooo! I can’t let this stop me from going!” Like a good CF/Lung Transplant patient, I called my team and set up an appointment to be seen with the hope that I would get the “ok” from my team to go on my big trip. I arrived with my personal SBAR form all filled out, questions at the ready and feeling very high on the activation scale.

The flu swab was negative, WBC was normal, chest X-Ray looked good and I was not spiking fevers. After a great conversation with my transplant medicine doctor, we decided it would be okay to go on the trip as long as my symptoms did not get worse over the next few days. That was the news I hoped to hear!

A few days later, I was on my way to Thailand via a very long series of stops: Raleigh to JFK to Moscow to China to Thailand. Confident I had a simple virus, I boarded my first plane feeling very comfortable with traveling the long distance. By the time I got to JFK, things began to change and by the time I was ready to board the plane to Moscow, I knew I was too sick to travel. After making the tough decision to turn around and getting my flight home arranged, I began my descent into illness.

In the interest of the reader, I want to begin by saying I was fine and I am fine. Eventually, it was determined through a bronchoscopy that I did have the flu. Just the flu. Especially this season, few people seemed to be able to avoid this virus and, just by how common it is, it seems silly to say that it brought me to my knees; especially in light of my past medical history. But it did.

Fever, fatigue, coughing…the normal flu stuff. At some point in the illness process I lost my voice entirely which was far more debilitating than I would have imagined it to be. As a CF/ Lung Transplant patient, I was hyper-focused on my symptoms and my internal life was one of balancing logic (“this is just the flu”) with diligence (“you can’t let this get away from you”). I had faith in my team and hoped each day that I would feel better but, day after day, I felt worse and worse. Worry began to creep in and clouded my mind. My once clear, organized approach to dealing with this illness challenge began to slip away. My level of activation seemed to be melting away along with my sense of well-being.

It was approximately one week after my initial symptoms that I had a night of restless sleep peppered with visions of ventilators. It was as if I could feel the life draining out of my body and I thought to myself, “Oh, I can see how people die from the flu.” I couldn’t help but wonder if I was experiencing anxiety or a premonition. My canceled trip to Thailand was no longer something I gave a second thought—my goal had shifted from wanting to go on that trip to wanting to make it through this alive.

The following morning, I carried the weight of my ventilator dreams with me as I went to have a bronchoscopy. At the hospital, I felt what has become a very common dichotomy for me: my very personal (often unspoken) illness experience butting up against the day-to-day work of those caring for me.

Because of my history working in a hospital, I both recognize and respect the “why and how” of daily operations. During the years I worked as a patient advocate in an academic medical center, my days were dictated by structure. The structure of the CMS policies I was required to follow, the structure of prioritizing the calls, letters and pages I received each day and the structure of daily work flow for the clinical providers surrounding me. Checklists, protocols and routines were everywhere. Assuming the role of sick patient, however, I was reminded that the experience of being a patient is often the antithesis of a structured, day-to-day norm. In fact, showing up for healthcare is quite opposite from a “normal” day. Likewise, being activated wasn’t something I had achieved and could check off of a to-list; it was something that I had to work to maintain.

The walk from the car to the front door was difficult; I was too weak to walk without holding on to my friend. After checking in, I had to get labs, CT and go to clinic. All of these were in very different parts of the hospital and the walk to each area seemed to be miles and miles. In each waiting room, I longed to lie down but there were only hard, upright chairs. I wore a mask and, since I lost my voice, nobody could hear me or see my mouth move. Person after person seemed both surprised and shocked to discover I was unable to communicate verbally. To all of the people I presented to, my case was not remarkable nor was it dire. Objectively, they were correct. That didn’t change the fact that I was still weighed down by my night of ICU visions and getting from “A” to “B” seemed to take all of the strength I could muster. It seems strange to me now that all of those emotional twists and turns had gone largely undetected by those around me; both my medical team and my family.

After the bronchoscopy, I was given strong antibiotics and slowly began to recover. My healing was as palpable as my descent into illness. I could feel my body changing every day and, some days, I was filled with a sense of euphoria because of my improving health. The tides had shifted and my internal life was one of hope and gratitude. Increasing physical strength buoyed my ability manage my life again. My challenging internal journey was winding down and I was returning to my “activated” self.  My sites were now set on going back to work and rescheduling that trip to Thailand.

If we want to "engage" patients, we must never lose sight of the fact that we are functioning in two different worlds: one that demands predictable outcomes and one that, by its own nature, can never be truly be made submissive to our will. As many times as I have lived through illness and healing, I am always amazed at how quickly I forget the reality of what it is to experience it. To try and operationalize the patient experience is like trying to contain water. It can be done, certainly, but to dishonor the unpredictable nature of illness/healing is like trying to deny the properties of water.

As we continue to hammer out ways to be better partners in the road of illness and healing, it’s natural for people on both sides of the bed to feel frustration. It’s also imperative that we keep in mind that this frustration does not result from one person being right or one person being wrong. Both are simply behaving exactly as the nature of their respective experiences dictate: the healthcare professional is functioning from logic, structure and science and the patient is immersed in the ever-changing tides of an illness/healing dynamic.

Activation levels are not a constant, no matter who the patient happens to be or how extensive their medical history. Knowledge, skills and confidence rise and fall like water lapping against the shore. If we begin all of our interactions with that awareness, we can put aside some intrinsic, (often) unconscious frustrations that derail us from partnership and effective communication. It is then we can truly meet people where they are and come together as a team.

 

Tiffany Christensen
Vice President, Experience Innovation
The Beryl Institute

Tags:  communication  flu  healthcare team  partnership  patient engagement  personal experience  recovery  story  team  together  transplant 

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You Had Me at Hello: The Importance of the First Greeting in the Patient Experience

Posted By Terri Ipsen, CPXP, Thursday, February 1, 2018
Updated: Monday, January 22, 2018

The greeting. Such a small thing, but a wide lens to what a patient’s experience might be like during a visit to the doctor. At The Beryl Institute, our definition of experience includes “the sum of all interactions”; so getting this first step right – greeting the patient – is critical to influencing the patient’s perception and expectations about the care they will receive.

As Hurricane Irma was blasting through my home state of Florida, I was experiencing a physical “natural disaster" of my own: a herniated disc in my back that had trapped the nerve in my left leg, leaving me almost incapacitated. Getting immediate treatment for the pain from my regular doctor was impossible, as the storm had forced her to evacuate. To delay finding relief from my excruciating pain was not an option, so with the help of a friend, I was fortunate to get an emergency appointment with a spine specialist in another town. And this is where my story about first greetings begins.

The long 45-minute drive to the specialist was horrendous; my daughter was my driver as I laid flat in the back seat. Upon arrival, I shuffled into the medical office. Grimacing, I slowly approached the reception desk.  Before my name could even pass my lips, harsh words came flying at me from the other side of the glass window.

Do you have an appointment?” I thought to myself: Seriously? That is the most important question to ask me at this moment? I hobble through your front door, contorted with pain, and you are concerned about whether I have an appointment? The person on the other side of the window clearly was not focused on me, the patient, but rather the disruption that an unexpected patient would have on her day. No expression of empathy or compassion was displayed as she shoved a clipboard of papers into my hands. No assistance in finding a comfortable chair ever came. 

The poor welcoming carried over into the remainder of my visit: a 45-minute wait in reception and another 30 minutes in the exam room. There was no communication from the staff during either of these wait times – missed touch points that could have had major impact on my perception of care.

My experience in that medical office reinforces that there is still a lot of work to do in returning humanness to healthcare. The good news is that there are practices that do get it right, and this is where my story continues. The following week I visited a surgery center for a spinal injection. The greeting I received there was so different from my experience at the doctor’s office. Still in pain, I shuffled up to the front door. There, three nurses rushed outside and greeted me. One took my hand and acknowledged the pain in my eyes, “Looks like you need some help here. Let’s get you a wheelchair. We’re going to take good care of you.”  I felt I had arrived in heaven.

The receptionist was equally compassionate. Instead of giving me a clipboard of papers to fill out on my own, she left her desk and sat next to me in my wheelchair. She asked me the questions and completed the paperwork on my behalf. This provider got it right. The surgery center had built a culture of excellence based on empathy and compassion which was evident at every touch point of my visit. Imagine how healthcare could be changed if all providers embraced such a philosophy!

Frontline staff speaks volumes to the culture of healthcare organizations. A greeting that includes a smile and a courteous acknowledgement of a patient’s needs sets the scene for a good experience and, more importantly, customer loyalty. It made all the difference for me. Thank you, surgery center, for a great patient experience. You, indeed, had me at hello.

 

Terri Ipsen, CPXP
Executive Assistant
The Beryl Institute

Tags:  communication  compassion  empathy  first impressions  organizational culture  patient experience 

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Do You See What I See?

Posted By Tiffany Christensen, Monday, December 4, 2017
Updated: Monday, December 4, 2017

As a person who lives with cystic fibrosis and has had 2 double lung transplants, I have experienced many stages of illness. I have understood from a very young age that having this illness is something people feel badly about and sometimes even wonder why “bad things happen to good people.”

But what if we have it wrong? What if illness isn’t the worst-case scenario? What if instead of looking at me with pity, I should be looking at you with pity because you don’t see what I see?

In my lifelong career as a patient, I have had people respond to me in all kinds of ways. The reactions were more pronounced as I grew sicker and they reached their peak during the time I wore oxygen. When I was wearing oxygen, some people would stare, some people would look away and others would approach me and say things that often caught me off guard. One man in Target said, “You shouldn’t have smoked so much.” One woman in Macy’s said, “I’ll pray for you.” My cousin asked, “Why would God do this to you?” Almost all of the people I encountered said—with their eyes— “You poor thing, I’m so glad I’m not you.”

While the intentions were almost always good and the reactions easily explained as a reflection of each person’s internal relationship with life, death and uncertainty, none of them ever hit the mark.  Nobody I came across ever reflected back to me what my perception of myself happened to be.

I felt physically weak, yes, but everything else about me felt strong. I felt connected to the universe, I felt a strong understanding of my purpose in this world and I felt lucky to have the lessons of illness laid before my feet day after day. The very last thing I wanted was pity. If anything, I would have liked admiration.

Imagine for a moment a patient laying in a hospital bed. They are curled up slightly around themselves, pale in the face and not very interested in interaction. Imagine walking in to see that patient. What might you think? What words come to mind? Vulnerable? Sad? Weak?

Now imagine walking into that same room with a very different lens. If you could see into that person’s mind, what do you think you would find there? Simply because they are not talking does not mean they aren’t thinking. Just because they aren’t emoting does not mean they aren’t feeling. So why are they so quiet? What are they doing?

They are enduring. They are bracing themselves against pain or discomfort. This takes energy and concentration. This takes a great deal of STRENGTH.

What if, like a marathon runner grimacing as they finish their final miles, we looked at the patient curled up in the bed and did not see weakness but, instead, saw determination and grit? What if we encouraged them, like we would do on the sidelines watching athletes riding their bikes in an Iron Man, telling them “You’re doing great! I know it’s hard but you’re amazing!” What if we stopped pitying people who are sick and saw them as people we could learn great lessons from? How would this change the way we deliver our healthcare?

Being sick is often an isolating experience. Not only because of the physical symptoms that limit our ability to live an active life, but because of the perception of weakness others project onto us. As I shared earlier in this post, during the time that I wore oxygen, I had a lot of comments from friends, family and strangers about my appearance of health. What I almost never received were questions. I longed for questions rather than statements. Here are just a few that I would have liked to hear:

  • “I know you have bad days and better days. On a scale of 1 to 10, what’s today?”
  • “Is there something I could do right now to make your life a little easier?”
  • “I want to support you and I’ve never experienced anything like what you are going through. Can you help me understand what life is like for you?”
  • “You know I love you and I worry about you, but I’m feeling strong today. Is there anything you want to talk about that you’ve been keeping inside because you were afraid it would be too hard for me to talk about?”

And then there is this one statement I longed to hear:

  • “Caring for you while you go through this illness is really hard. Sometimes I get sad, angry…you name it. But, I want you to know, I wouldn’t trade it for the world. Having you is worth every second of this struggle.”

The internal world of sick people isn’t always going to match mine so this is by no means a prescription. At the same time, nothing bad can come from seeing patients differently. If you see them as strong, perhaps they will gain more strength. If you ask them questions, they may not always want to talk about it in that moment, but they know where to go when they do.

Illness forces us to focus on what matters in this life. Let those who live with it be our teachers while we admire them as they take on their personal marathon. I hope you can begin to see what I see and watch how it shapes the way we deliver care.

 

Tiffany Christensen
Vice President, Experience Innovation
The Beryl Institute

Planning to attend the IHI National Forum later this month? Join Tiffany Christensen’s Keynote session with Dr. Rana Awdish, MD, lead by IHI President Derek Feeley, as the two women touch on how they are using their patient experiences to improve healthcare. You can also join Tiffany during Sunday’s Learning Lab, the CEO Summit and her “meet the author” luncheon. 

Tags:  communication  impact  improving patient experience  perception  purpose  relational healthcare 

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