Engaging Patients

Reducing Readmission A Patient and Family StoryLisa Ann Morrise, MArtsFamily Member and Patient Advocate

Co-Lead of the Patient and Family Affinity Group of the CMS National Partnership for PatientsThe Reluctant AdvocateMichael was born at 31 weeks after a first trimester abruption led to placental failure. His low weight was 2 pounds 7 ounces. He was on the vent for a few days and developed BPD, NEC, bradycardia and apnea. He came home after 50 days in the NICU on oxygen and monitors.

I held my firstborn for the first time when he was three days old.

And then there were two . . .Timothy was born at 38 weeks, weighed in at 5 pounds 13 ounces, and cried non-stop for 9 months. Solid.

Third time a charmer!Kirsten was born at 38 weeks, weighed 5 pounds, 3 ounces and was unable to breathe or swallow due to Pierre Robin Sequence.Eventually she had a tracheotomy & G-tube.Kirsten was de-cannulated at a year, re-trached at age 8. She has had 39 surgeries so far.

The Good Our HeroOur Pediatrician, Wayne Cannon, folded his 6 foot 7 inch self into a small chair and spent over an hour explaining what was ahead of us with Kirsten. He then called me almost EVERY morning for a year.

The Good Our Other HeroKirstens Otolaryngologist, David Hill, has seen her as often as once a month for 20 years. He has participated in most of her 39 surgeries. He has even come in on Super Bowl Sunday to do a bronchoscopy when Kirsten had a major saddle injury that needed a two-hour surgical repair.

The BadFailure to resuscitate at birth found out sixteen years later that because of my daughter, the hospital now trains on PRS

Communication ErrorsDo not suction after tobra . . .Ive cared for 33 PRS babies. 1st year Resident in July.

Sloppy CareDo you know how to take out a femoral line? Gee, I dont either. (Nurse & Resident discussion outside of room in earshot)

How to turn a nice person into a Difficult parent!

As a Type A person I had to evolveI finally figured out there was more than one way to suction a trachAt some point I decided I was MOM not the Head NurseThis took about ten . . . years . . .

My Response An Engaged Patient or Family MemberI found the Institute for Patient and Family Centered Care online:www.ipfcc.orgExcellent resources that have evolved in the last 18 years to support PFCC in hospitals and other healthcare settingsI was asked to join the Primary Childrens Medical Center Family Advisory Council.

My Response An Engaged Patient or Family Member

For the many years the PFAC was an advice, and sort of consent group.Shed light on many hospital practicesFrom my research into PFCC, I knew it could function more effectively.A PFAC Reborn Institutional Level Patient EngagementWith new hospital leadership, we re-vamped the PFAC. I wrote new by-laws, created term limits and developed a family leadership structure.We had a solution focusShortly thereafter I was hired as the PFAC Coordinator. Part-time.

A PFAC Reborn Institutional Level Patient Engagement

We made incredible progress, creating a collaborative atmosphereNew Parent HoursInformed processFacility DesignEducational Materials that reflected parental input Started a Youth Advisory CouncilDefinition:Patient and family advisors work in a variety of healthcare settings sharing their personal stories to represent all patients and families in providing and educated perspective of care by bringing authenticity, empowerment, respect and inspiration to the design and delivery of healthcare systems. Patient & Family Advisor roles include partner, educator, speaker, listener, advocate, collaborator and leader, ensuring the focus of healthcare is centered on the patient and the family.**Collaboratively written by the patient and family advisors in attendance at the IHI Forum, 2012.Best Practices in Institutional Patient Engagement

Welcome Patients and/or Family Members onto your CommitteesQuality & Safety CommitteesBoards of TrusteesReal patients not just community leaders.Other CommitteesTwo or more patient or family members is best.Experiences with ReadmissionToo sick to be cared for at home! Kirsten was discharged with home health after 12 days in the NICU. She was back in the Childrens Specialty hospital in less than a week.

Experience with ReadmissionSent home without getting better!Had pnuemonia when she was one. Had a tracheotomy.Normal O2 was room air.Sent home first time on 2 liters, came back on 4.Sent home second time on 6 liters, came back on ten!!!Stayed in-patient until she got back down to room air.

Experience with ReadmissionHospitalized 16x her first year.Hospitalized many times her second year.Was accepted onto the Medicaid Waiver finally had night nursing.Significantly fewer hospitalizations

Experience with ReadmissionGoing home = hurry up and leaveIn our experience, you are in until youre out.Often relied on home nurse for education and care post-discharge otherwise would have been more readmissions

Experience with ReadmissionsClinicians who rely on protocols like patients go home five days after jaw surgery instead of looking at the patient.Nauseated but sent home. Vomited with jaw wired shut. Back in-patient!

Experience with ReadmissionChallenges are predictableMy ex-husband broke his back. I told him, They will want to send you home with no preparation.That happened but he was prepared and said, No!

Wed really rather be at home!We appreciate all that has been done to contribute to our family being able to be home together.We hope that you will help other patients and families be at home, safe and with the support they need!