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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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It is Time for the Experience Era

Posted By Jason A. Wolf, Ph.D., Thursday, May 5, 2016
Updated: Thursday, May 5, 2016

Just three weeks ago as we gathered at Patient Experience Conference 2016 I challenged our participants and the public watching us live that this is our moment in patient experience. If we look to make the kind of change we believe is needed in our new healthcare world, we must work to ensure the conversation on patient experience now rests at the heart of healthcare itself.

This commitment to experience requires a macro-perspective and one I continue to reinforce every chance I can. Patient (and family, resident, elder, etc.) experience is not just about satisfaction or even essential efforts such as patient engagement or approaches such as patient- and family-centeredness. Rather experience is ALL someone has in their encounter with a healthcare organization, be it in a clinical setting at the bedside or exam room, scheduling an appointment, engaging with a bill, and even communicating with a friend at a community event or while at the local market. Every one of these interactions shape the experience someone has, they shape the story someone carries with them about it and influences their perceptions and ultimately their actions.

The bottom line is that in your healthcare organization and the thousands around the world that are engaging with or attending to the needs of their customers right now, you are providing an experience. The question is, are you strategically planning for and addressing it? In a consumer driven healthcare world, regardless of national system, policy incentives or other supports or constraints, the ultimate opportunity is to ensure experience is not simply left to chance. Rather it should be part of the very fiber of your organization, representing the kind of encounters you hope to provide and the outcomes you look to achieve. Yes, at its core, experience encompasses all we tackle in healthcare from quality, safety and service interactions to the implications of cost and the influence that outcomes have on public, systemic and personal health decisions.

I also believe as the experience movement coalesces around these core ideas it has the opportunity to stand with conviction, grounded in evidence, to declare that experience drives the very outcomes we look to achieve in healthcare: clinical outcomes, financial results, consumer loyalty and community reputation. In the latest issue of Patient Experience Journal, I offer, "An investment in a strong and positive patient experience is the leading choice you can and should be making in healthcare today. The results of this decision will only lead to even greater and lasting results.”

This then may be our simple, yet significant call to action. That we recognize and act on the reality that experience encompasses all we do in healthcare and drives the outcomes we aspire to. In that light it brings us to reflect on a new era in healthcare. Thanks to insights from Don Berwick in challenging us to consider a third (what he calls the moral) era, I hope to push us further. Beyond just acknowledging the operational considerations he suggests as we look at how healthcare as a system progresses, we too must look at healthcare for all it was intended to and still must strive to accomplish. It is time to place the human experience back at the heart of healthcare. It is time for the experience era.

The experience era calls us to consider 8 fundamental actions:

  • Acknowledge experience is a global movement
  • Recognize experience encompasses all we do
  • Remember in experience all voices matter
  • Focus on value from the perspective of the consumer
  • Ensure transparency for accessibility & understanding
  • Measure & incent what matters
  • Share wildly and steal willingly
  • Reignite our commitment to purpose

If we move forward with purpose and choose to align our efforts with an experience mindset, we not only welcome the experience era; we reignite the heart of healthcare itself. With a focus on those we care for and serve and a commitment to those who provide care and support those efforts every day, we can build the most healthy and vibrant system of care the world has ever seen. It will take all voices to do this, all nations to commit, all systems to realign themselves and all organizations to focus their intention. It will take all of us to make the choice that experience matters and then act. That is the opportunity we now have in front of us…I am ready for our first steps forward together.

 

Jason A. Wolf, Ph.D.
President
The Beryl Institute

Tags:  aligning efforts  commitment  encounters  experience era  interaction  movement  Patient Experience Conference  purpose  value 

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