Partnering with Patients: A Bed s Eye View of Safety Tiffany Christensen
Where we re going A Hybrid Patient Perspective Current State of PFE Operationalizing PFE using shared language Patient Activation
A Bed s Eye View
Diagnosed at 6 months old with the gift of cystic fibrosis
I had a relatively normal childhood
I had my first hospital stay at Age 12 I had three weeks of intravenous antibiotics and got my first taste for the need to be an advocate
This was just the beginning There would be countless more days spent in the hospital during my lifetime
By age 21, I was sick almost all of the time. I was attending the North Carolina School of the Arts and I just couldn t keep up. I had to give up my Hollywood dreams and drop out.
I was on oxygen getting tube feedings. The doctors put me on the list for a bilateral lung transplant.
I waited 4 years for my call I was 95 pounds and my lung function was 25% of capacity
Facing Medical Error
Patient and Family Centered Care Guiding Principle: Information Sharing
I waited 1 more year for my first set of donor lungs Now, due largely to the surgical error, I was 87 pounds and my lung function was 18% of capacity
April 4 th, 2000
Patient and Family Centered Care Guiding Principle: Participation
I was healthier and puffier than ever before!
I traveled a winding road of confusion and self-doubt. I didn t know how I wanted to make my mark on this world. I didn t know how to live a life with healthy lungs.
In June of 2002, my lung function started to drop. I was diagnosed with my second terminal illness 6 months later. I had Chronic Rejection.
The Deafening Diagnosis
Within two years, my lung function had dropped to 10% of capacity. I was 73 pounds. I was dying and the doctors gave me 6 more months to live.
Loss of Purpose and Worth
I asked my doctors if I could have a second lung transplant. They said no.
After the stages of grief the soft arms of acceptance
I reconnected with the understanding of my childhood CF was my greatest teacher and I was grateful I was at peace
We got a new transplant coordinator.
Only 4 months after I was listed, I got the call My fear was overwhelming Going into the OR, I was looking for comfort
Patient and Family Centered Care Guiding Principle: Dignity and Respect
On March 28, 2004
Despite my team s concern, the recovery was easier than the first time.
Unlike after the first time, I was not confused about what to do with my life. I felt a strong calling to reach out to others touched by illness. I wanted to share what I had learned
Loved and Lost
Love again
And again
And again
And again
Sister, Daughter, Friend
And working on that other thing...
Duke PAC
Preaching Partnership!
Is Partnership Possible?
I was tired Less compassion more a survival mode Saw a disappointing view of humanity
Overall, I saw other people
From the IPFCC: grounded in mutually beneficial partnerships From the IOM re PFE: patient values guide all clinical decisions Person Centered defined by IHI: genuine partners in their care So much to learn about something I thought I already knew!
Person- and Family-Centered Care is putting the patient and the family at the heart of every decision and empowering them to be genuine partners in their care ~Institute for Healthcare Improvement
PFE = Kelly Clarkson
Patient and Family Centered Care Guiding Principle: Collaboration
How do we primarily receive patient/family feedback? How is the feedback we get from PFAs different?
Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. It redefines the relationships in health care. ~The Institute for Patient and Family Centered Care
Task Groups Peer Rounding Quality Observers PFAs in RCAs PFAs at the board level PFAs as lay navigators or activation coaches in the community PFAC Table Speaking within organization Interviewing potential clinical and non-clinical staff and leaders
Have you ever heard this question: Partnering with PFAs is great but where are the outcomes? Usually program-specific but they are out there Issue to address: inadequate prep for colonoscopies 20% reduction in repeat colonoscopy due to inadequate prep (Kaiser, DC, Capitol Hill Outpatient Surgery Team)
Small Group: Discuss how/if your organization currently utilizes PFAs or community members to improve care and quality On a scale of 1-5 (5 being extremely helpful) tell your group how you would rate your current PFA Program Do you measure the impact? If so, how? If not, where might there be an opportunity to start?
What about collaboration at the bedside? How are we doing with Co-designing care? (Bedside Shift Report, Shared Decision Making, etc.)
Small Group: Current State of Care Co-Design? STRENGTHS WEAKNESSES Internal factors OPPORTUNITIES THREATS External factors Positive Negative
Where do we begin?
Acknowledge the recent evolution of roles: Patients and Families Passive Advocate (reactive) Activated (pro-active) Healthcare Providers Dictate care Consider patient input Co-design care plan
Providing care that is respectful of, and responsive to, individual patient preferences, needs, and values; and ensuring that patient values guide all clinical decisions ~Institute of Medicine
So the patient is part of the team. Why is that so hard? Why don t our PFE Best Practices always work well?
We trust the education and skills of the provider. Now it s time for the provider to help the patient trust him/herself.
What is Patient Activation? 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). May 7, 2014
Patient Activation Believing the patient role is important Having necessary confidence & knowledge to take action Taking action to maintain and improve one s health Staying the course even under stress Adapted from Patient Activation Measure (PAM)
Activation addresses many of today s most pressing concerns Improved adherence Improved safety Reduced readmissions Reduced ED visits Improved overall outcomes Optimization of Care Passive Activated Co-Design Care Dictate Care Advocates Patients & Families Consider pt. input Healthcare Providers
Health Disparities and Inequity are often ignored OR misinterpreted as noncompliance, resistance or a lack of desire to get well. Patient activation teaches us that, when we meet people where they are, they can become activated
Using Patient Activation to Transition Patients from Hospital to Home The population consisted of all stroke patients discharged home from the IRF over twelve months (n=177). The intervention was patient stroke education based on the PAM and the PAA scores while utilizing the PHR. The nurses focus their stroke teaching on patients with lower activation scores with the goal of increasing the scores and improving patients ability to return home and avoid an unnecessary readmission. The patients in the project experienced a 50% decrease in readmissions in less than thirty days from patients discharged the previous year The results over one year mirror the original three month pilot project. Abstract 67: Using Patient Activation to Transition Patients from Hospital to Home Mary McLaughlin Davis 2015 by American Heart Association, Inc. ahajournals.org
A bird sitting on a tree is never afraid of the branch breaking because her trust is not on the branch, but on her own wings.
HOW? Person- and Family-Centered Care is putting the patient and the family at the heart of every decision and empowering them to be genuine partners in their care ~Institute for Healthcare Improvement
Operationalizing PFE through Shared Language Why does share language matter?
TeamSTEPPS An evidence-based teamwork system to improve communication and teamwork skills among health care professionals. (Based on the aviation model of safety) Scientifically rooted in more than 20 years of research and lessons from the application of teamwork principles. Developed by Department of Defense's Patient Safety Program in collaboration with the Agency for Healthcare Research and Quality. Increases team awareness and clarifies team roles and responsibilities. Resolves conflicts and improves information sharing. Eliminates barriers to quality and safety.
Where is the patient? Yes and.
CUS for PFE For times of frustration or confusion I am CARED!
Watch CUS for Patients in action at sickgirlspeaks.com: go to our videos
Taught to patients and families at admission and in other environments where patients and families should be utilized to ensure information shared is accurate and complete Example from Madigan Hospital in Tacoma, Washington: Admitting Team Member(s): At any time during this admission, if you have a safety concern or a crucial question, please let us know so we can discuss your concerns as a team. This is called a safety Call Out. To make it easier to do this, we ask all of our patients and families to make the time out symbol with their hands to alert us that you have a safety call out. Let s try it. CALL OUT for PFE Partnering for Safety A strategy to empower patients and families to communicate important or critical information in the moment
Activation is a process Expert Patient and Family: Coach peer patients Eager Patient and Family: Track own data and medicines One Step at a Time Patient: One simple job at a time
It s your turn!
Giving Your Patient a Job The One Step at a Time patient and family What does that look like? Example: Next Slide
Ed Johnson from TeamSTEPPS Setting: Clinic Ed Johnson, a 41-year-old patient with a history of hypertension, is seen in the Cardiology Clinic for a follow-up after his recent admission to rule out a myocardial infarction. His vital signs are normal except for a BP of 170/110. An EKG shows NSR without evidence of ischemic changes. He states that he has been having episodic chest pain since his release, so the physician decides to repeat his cardiac enzymes. His CPK is 201, and a Troponin I level is pending. Mr. Johnson's pain resolves, and he insists on going home. The Troponin I level is still pending when Mr. Johnson is discharged with instructions to call the office the next day if he is still having problems. Shortly after Mr. Johnson is discharged, the Troponin I level of 0.22 (normal <0.03), indicating myocardial ischemia, is called in to the nurse in the clinic. The nurse notifies the physician of the result. No attempt is made to contact Mr. Johnson. Later, he is found unresponsive and having difficulty breathing. His friend calls 911, and when the ambulance crew arrives, they find him apneic and they cannot detect a pulse.
Safety isn t just about our bodies! Emotional Safety
Emotional Safety Betty s story How safe is if for Betty to go home today? How might the conversation have gone differently?
Before any of that mattered I had to admit something.
First, I had to understand my state of being Emotional exhaustion Depersonalization Inefficacy (I now know these are the top 3 signs of burnout)
All of the symptoms of burnout block partnership
Teressa s story
Find an outlet stories, honesty
Thank you!! Tiffany Christensen Patient & Family Engagement Specialist, (919) 677-4119 www.sickgirlspeaks.com Find me on Facebook: Tiffany Christensen is Sick Girl Speaks