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The Beryl Institute invites members and guests to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, contact michelle.garrison@theberylinstitute.org.

 

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Patient Experience Through Different Lenses

Posted By Katie Litterer , Friday, May 27, 2016

I am the proud mom of identical twin girls, Sophie and Maddie, who were born unexpectedly and prematurely in 2008.The years since their arrival have been tumultuous, triumphant and everything in between. For more about our story, please check out this recent article on Boston Children's Hospital's Thriving Blog.

To say that my husband,Paul, and I weren't ready to advocate for our children upon their arrival is an understatement. Fueled by adrenaline and fear I didn't know what questions to ask, I often struggled to understand what the medical team was communicating to us and I had no faith in myself when nurses would say, "You're the mom, you know your children best."

I stopped working to care and advocate for my daughters and, over the years, have become a mom I know they can count on. I have also turned my advocacy for them into a new career. I started this journey by serving on the Boston Children's Hospital Neonatal Intensive Care Unit Family Advisory Council from 2009-2011. Since 2012 I have served as a member of the hospi­tal-wide Family Advisory Council alongside 16 other parents. And,in January 2016, I joined the staff in our Hale Family Center for Families as a Family Partnerships Coordinator. In this role, I strive to weave the voice of patients and families into the fabric of decision making at Boston Children's. It's a role I cherish and feel honored to serve in.

These have become my "truths":

AS A PARENT:
Patient experiences are as much about Paul and me as they are about Sophie and Maddie. A great patient experience, for us, is defined both by medical outcomes and by Paul and me tak­ing part in finding solutions. Within this experience process, I advocate until I am satisfied that I've done my best for my children, and I expect our care team to understand and respect that.

AS A FAMILY ADVISOR:
Working alongside other volunteer family advisors has taught me and that every family has their own patient experience stories, perspectives and priorities. While my natural tendency is to ad­vocate for what I believe would suit my own family best, I remind myself that it's important to col­laborate with-and respect the perspectives of-other advisors to achieve our larger group goals.

AS A FAMILY PARTNERSHIPS COORDINATOR:
I recognize that experiences are determined both at and beyond the bedside; that improving patient experience within an organization is a fluid team effort; that there is no singular equation that guarantees a positive outcome every time. At a recent Patient Experience Summit, Juliette Schlucter, Director of Child and Patient Experience at NYU Langone Medical Center, shared a view that deeply resonates with me. It is that if you want to affect great change, you must be willing to listen to the other voices in the room. She was talking about collaboration.

As a parent, a volunteer family advisor and now, as a hospital employee, I have gained different perspectives on what patient experience means and how a great patient experience can be achieved.

 

Katie Litterer spent 10 years working in the financial services industry before becoming a mother to identical twin girls, Madeline and Sophie, born at 27 weeks gestation. With care experiences at 5 hospitals in two states, Katie began volunteering her voice as a family advisor in 2009. Katie now juggles her role as a Family Partnerships Coordinator at Boston Children's Hospital with her most important job, caring and advocating for her sweet girls. Katie is also an active member of her daughters' school community in addition to serving as trustee for a charitable private foundation that supports archaeological research of native peoples in the Americas.

Tags:  collaboration  journey  patient and family advisor  patient and family advisory council  pediatric  story 

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Hello, I am your patient…

Posted By Eric Palmer RN, BSN, MSN/MHA, Monday, October 7, 2013

We are creating a chapter in my life. You control a large part of this part of my life’s story. For the time being you and I are co-authors of me and of my experience as a patient in your care. Let’s get started.

Any story has the following elements.

1. Setting: You control most of the setting in this story.

  • Please listen to me. I may not be a nurse or a doctor, but I know how I normally feel. I don’t feel normal, so I came to you. Help me, but please listen to me first.

2. Characters: Obviously you and I have a starring role in this story, but there are many others.

  • Some I will never meet face to face, but they can control my destiny in this story, just as much as you.
  • I want to believe that the only villain in the story is what is making me sick. I need heroes. I need the kind of hero that takes the time to listen, to ask and to respond quickly and kindly.

3. Conflict: I most certainly have conflict; otherwise, I would not be here. Ironically, as your co-author, I might not fully understand the conflict raging inside me. Norman Cousins wrote a book about the conflict experienced in his own story called Anatomy of an Illness. It is remarkable how many things on his list are the same conflicts I am experiencing. My conflicts might be that I feel…:

  • …helpless.
  • …I may never function normally again.
  • …as though I am a burden to you and to my loved ones.
  • …conflicted between wanting to be alone, but yet, being left alone.
  • …a lack of self-esteem, since maybe my illness was caused by me, because I am inadequate.
  • …resentment.
  • …confused. The technology surrounds me, yet, I may go days (certainly hours) without knowing the results of the last exam or worse the definitive answer is, "The test results are inconclusive.”

4. Climax: The highest point of tension in any story often involves a decision that needs to be made. I may fear those decisions because they…:

  • …are made about me but without me knowing.
  • …may rest solely on me and I don’t think I know enough to make that decision. 

5. Resolution: Even the end of this little story is written by both of us. It is not just me and not just you. But, I’m the one who has to write the other chapters of my life’s book. You can help me resolve this part of my story and continue on to other ones in my life if you will:

  • Please answer my questions. If you do not know, that is okay. Just tell me you don’t know, but please get me the information that will help answer my questions.
  • Please tell me about my medications. All of them. Even if I take them at home regularly, I may not be taking them the right way. But, always tell me about the new medications.
  • Please finish this part of our story in a language and at the level I can understand.

Please ask me to teach you the information you shared with me. Rather than merely repeating back to you the same words you used. You see, I need to be as independent as possible when I leave your care. So, here we are at the conclusion of our story together. I know it wasn’t always easy. I know you were co-authoring many other stories at the same time as we co-authored mine. But, I never felt that there were any other authors out there. Thank you for your time, your care and for being a hero...my hero and my family’s hero.

Eric Palmer RN, BSN, MSN/MHA is the Patient Experience Director at Saint Francis Hospital-Bartlett in Bartlett,Tennessee. He can be reached at eric.palmer@tenethealth.com.

Tags:  conflict  patient experience  resolution  setting  story 

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