April/May 2013, Issue 61

Moving Forward with 
and Family-Centered Care

Partnerships for Quality & Safety
An Intensive Training Seminar

October 28-31, 2013

Radisson Blu Mall of America     

Bloomington, MN

Registration Coming Soon

Thanks to Anne Arundel Medical Center for its Leadership Sponsorship of the Annapolis Seminar
A Conversation with Sherry Perkins and Susan Grant about the Importance of Family Presence and the Role of Leadership
Farewell and Best Wishes to the Amazing Julie Ginn Moretz
Brigham and Women's Hospital Team: Glad to Know You
Institute Releases Updated and Greatly Expanded 
Essential Allies and Words of Advice
Institute for Patient- and
Family-Centered Care
6917 Arlington Road, Suite 309
Bethesda, MD 20814
P: 301 652-0281
F: 301 652-0186
E: institute@ipfcc.org
W:  www.ipfcc.org
Thanks to Anne Arundel Medical Center for its Leadership Sponsorship of the Annapolis Seminar

A special thanks to our leadership sponsor—Anne Arundel Medical Center—and our program sponsors, Delmarva Foundation for Medical Care, Inc., Maryland Hospital Association, and Maryland Patient Safety Center for partnering with the Institute to bring this seminar to Maryland. Each of these organizations has demonstrated its commitment to patient- and family-centered care.

The Annapolis Moving Forward with Patient- and Family-Centered Care Intensive Training Seminar had more than 400 participants, representing nearly 120 organizations from across 33 States and 4 Canadian Provinces. We are proud that 29 Pinwheel Sponsor organizations sent teams, showing their commitment to providing education and skill development for staff, clinicians, and patient and family advisors to advance patient- and family-centered care.

Participants included 141 nurses in numerous positions, including chief nursing officers, clinical nurse specialists, administrative and clinical directors, clinical educators, and staff nurses. An impressive number of patient and family leaders—85—participated, as did nearly 30 physicians. In addition, participants represented a variety of departments and positions, including Quality Improvement, Patient Experience, Communications, Patient Safety, Pharmacy, Spiritual Care, Service Excellence, Wellness, Quality Policy & Advocacy, Music Therapy, and so many others.

Fifteen senior executives attended the Leadership Track, which featured an executive leaders program, in addition to the regular seminar programming. Each leader received a copy of the Institute's new publication, Partnering with Patients, Residents, and Families: A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Communities. This resource provides a wealth of information for leaders, including best practices from more than 130 exemplary organizations, and tools and links to online resources. Check out this publication to learn more about the role of leadership in advancing patient- and family-centered care.

Working with Weber Shandwick, the Partnership for Patients patient and family engagement contractor, the Institute for Patient- and Family-Centered Care introduced new social media engagement and outreach strategies for the recent Annapolis Seminar. Utilizing the hashtag #IPFCCAnnapolis, the Institute encouraged faculty and participants to tweet their reactions, questions, and notes on what they learned throughout the seminar. The level of engagement surpassed expectations and the Institute looks forward to continuing engagement on social media platforms for future events with excitement. Follow the Institute on Twitter.

Check out the blog posts written by Hospital Engagement Network (HEN) hospital participants about their experiences at the Annapolis Seminar. (See related article in the February 2013 Pinwheel Pages about the participation of HENs in the Seminar.)

Consider attending the next Moving Forward with Patient- and Family-Centered Care Intensive Training Seminar, October 28-31, 2013, Radisson Blu Mall of America, Bloomington, MN.

Registration opening later this month.

Check the Institute's website for updates.

A Conversation with Sherry Perkins and Susan Grant about the Importance of Family Presence and the Role of Leadership

At the Institute's Annapolis Moving Forward with Patient- and Family-Centered Care Intensive Training Seminar, the Monday afternoon plenary concluded with a conversation between Bev Johnson, President and CEO of the Institute, Sherry Perkins, Chief Nursing Officer and Chief Operating Officer for Anne Arundel Medical Center (AAMC), and Susan Grant, Chief Nursing Officer at Emory Healthcare and Associate Dean, Nell Hodgson Woodruff School of Nursing.

Bev invited Sherry and Susan to talk about how they worked to embrace family presence and eliminate the concept of families as visitors in their organizations. Here are some highlights:

Sherry, when looking for an "interruptive" strategy that would signal true patient- and family-centered care, was advised by the Institute to do away with "visiting" hours. Sherry did the math: the average length of stay in AAMC is 3.5 days, so 361 days a year someone other than hospital staff is the primary support for these patients, and yet "we've had the nerve to say...that we're going to have limits on family presence in our hospitals." Once AAMC made this decision to do away with what had been called "visitor control," the new policy was implemented with executive support from the CEO, the Board of Trustees, the Medical Executive Committee, and the CMO, CNO, and COO.

Susan told of how when she started at Emory it was in the midst of building the Neuro ICU that had a "patient- and family-centered design." It quickly became apparent that even with patient- and family-centered designed facilities, you need to address "the people piece." Within one year, the patient- and family-centered initiative eliminated "visiting" hours and supported family presence. They removed ICU signs that limited "visiting" hours, stopped using the word "visitors," and developed policies for staff and structures to support family presence. Over time this spread across other Emory hospitals;  Emory Healthcare has guidelines for what family presence means.

Both leaders talked about the importance of methodically planning to implement this change. They discussed how they responded to perceived barriers to family presence—such as infection control, security, and HIPAA, to name a few—and how they are really bogus. When these issues arise, the leaders and their staff partner with patient and family advisors to explore concerns, deal with them, and address the fact that there is no evidence to support restrictive "visiting" policies.

Both leaders spoke of the necessity of partnering with patient and family advisors and having staff champions. For example, at AAMC, an interdisciplinary "Revisiting Visiting" task force included patient and family advisors as well as representatives from security, radiology, housekeeping, nursing, medicine, therapy, women's and children's care, surgery, and critical care. According to Sherry, the work included "introspection...discussion ...sharing stories and...blowing through myths..." Mechanisms are built to support staff in making this change.

The conversation included the use of positive messaging as a strategy for change that confirms a respectful and caring environment for all. For example, instead of a loud announcement in the evening that "visiting hours are now over, please leave the hospital," Emory University Hospital Midtown, in Atlanta, has a quiet gentle message asking, as people are getting ready to go to sleep for the night, that they keep their voices down and be quiet, to "support a more healing environment." Staff members work with advisors to promote positive messaging to support the desired type of environment, and leaders model the use of positive messaging, using words such as "inviting" or "welcoming" rather than the negative messages of "prohibiting" or "not allowing."

The bottom line: it is important not to assume that we know what is best for patients and families, but rather work together in partnership to support patient choice. As Susan Grant said, the "real turning point was partnering with advisors where the advisors were the ones who said you know this isn't just about... keeping people out...and taking that control away from you, this really is about you partnering with your patient around what the patient truly wants and doesn't want."

Learn more.

Stay tuned—The Institute is about to launch our Better Together~Partnering with Families campaign to change the concept of families as visitors.

Farewell and Best Wishes to the Amazing Julie Ginn Moretz

Julie Ginn Moretz, the Institute's Director of Special Projects for more than six years, recently left the Institute to become the Associate Vice Chancellor for Patient- and Family-Centered Care at the University of Arkansas for Medical Sciences (UAMS) in Little Rock, AK. UAMS includes the colleges of Medicine, Nursing, Pharmacy, Health Professions, and Public Health. While the Institute team is very sad to be losing Julie, we are all thrilled that she has this exciting opportunity to work with clinical staff both in hospital settings and ambulatory care. She will be working with academic affairs and college deans of these five schools to support and enhance the education of future health care professionals about the importance of patient- and family-centered care in their practice.

UAMS Chancellor Dan Rahn, M.D. stated, "I have never met anyone more passionate about patient- and family-centered care than Julie. Her real-life experience gives her a unique and powerful perspective on this issue. We are honored to have her take the lead in this crucial endeavor at UAMS. Our goal is nothing short of transforming the way we include patients and families as full partners in their care."

During her tenure at the Institute, Julie worked tirelessly on multiple projects to expand partnerships among health care professionals, patients, and families all across North America, and internationally as well. Julie also was responsible for all the Institute's meetings, including the semi-annual Moving Forward with Patient- and Family-Centered Care intensive training seminars, and the Institute's last three International Conferences, and started the ever-popular Institute webinar program.

Prior to joining the Institute, Julie had nearly 15 years of hands-on experience in developing patient- and family-centered care programs for the Medical College of Georgia Health System (MCG) [now called Georgia Regents Health System], a health system with visionary leadership committed to having partnerships with patients and families at all levels of the organization. Julie's initial involvement with MCG began in 1993, as a parent advocate. She later served as the Chair of the MCG Family Advisory Council, and ultimately was employed as the Director of Family Services Development at MCG Health System.

As Director, Julie oversaw five departments that supported patients and families and was the liaison for hospital-wide Patient and Family Advisory Councils. Julie initiated the Family Faculty program where patient advisors co-teach with professors and serve as a faculty tutor for first year medical students for the Communication Skills Lab and Essentials of Clinical Medicine course. (See side article on Family Faculty programs.)

Julie continues to serve as an advocate for patients and their families. She is a long-standing member of the Institute's faculty, is a PCORI patient engagement advisory panel appointee, has participated in symposia with the Institute for Healthcare Improvement, served on an American Board of Internal Medicine task force, participated in numerous panels including a Health Research & Educational Trust (HRET) panel of experts to mark the tenth anniversary of the Institute of Medicine's report To Err Is Human, presented at the Accreditation Council for Graduate Medical Education. She shared the stage with President and Mrs. Clinton and Vice President and Mrs. Gore to discuss the effects of a child's hospitalization on the family. To learn more about Julie and her family, check out the PBS Documentary Remaking American Medicine...Health Care for the 21st Century series, Hand-in-Hand, where she was named a Champion of Change.

Julie's work—at MCG, and the passion she brought to the Institute, and is taking with her to UAMS—is inspired by her youngest son, Daniel, who was born with a congenital heart defect, and had a dozen heart surgeries including a heart transplant.

Julie, all the best in your exciting new endeavor in Arkansas and we look forward to having you as a faculty member at our seminars in the future!

Congratulations and Farewell to Our College Intern, Colin Humphreys

The Institute was thrilled that Colin Humphreys, a senior at the University of Maryland, joined the team for his final semester of college. Colin just completed a four-month internship at the Institute, as a requirement of earning his BS in Community Health, which he will receive later this month.
 Colin learned about the Institute and patient- and family-centered care, and worked on a variety of projects, from updating bibliographies to assisting in video editing. Colin also had the opportunity to attend the Institute's Intensive Training Seminar in Annapolis.

Colin, currently a resident assistant at the University, hails from New Jersey. Colin played on his school's lacrosse team, and was a member of the swim team. In his free time, Colin likes to read, hang out with friends, and travel.

Colin was a great addition to our team, and we will really miss him! A hearty congratulations to Colin on his May graduation, and best wishes for future endeavors!
Brigham and Women's Hospital Team: Glad to Know You

Excerpted from Pat Mastors' blog post at Islands of Excellence, with permission of the author.

"When bombs went off near the finish line at the Boston Marathon, runners and spectators grabbed their loved ones and scrambled to get out of the way.

Joshua Kosowsky and Heidi Crim scrambled to get closer.

Joshua is Clinical Director of the Emergency Department at Brigham and Women's Hospital in Boston. Heidi is Nursing Director. Both were sitting with me at a conference room in Maryland when the horror of Monday's carnage entered our consciousness through texts, Twitter and emails. We had a moment of silence for the victims. Moments later Joshua and Heidi were threading their way to the exit doors, en route to the airport, back to Boston and their hospital. They would join their colleagues who were now working on 31 of the 140 people injured in the blasts. Hours later more of the Brigham team would head back to Boston, with those left behind on alert to see if and when they were needed." Read the entire post.

Institute Releases Updated and Greatly Expanded 
Essential Allies and Words of Advice

Essential Allies—Patient, Resident, and Family Advisors: A Guide for Staff Liaisons, by Mary Minniti and Marie Abraham, is a practical, how-to-guide for clinicians and staff members who are responsible for coordinating partnership endeavors with patient, resident, and family advisors. This revised book greatly expands content from the previous edition, and captures collaborative endeavors across the continuum of care. It includes advice, strategies, resources, and a wealth of examples from a variety of organizations, including primary and ambulatory care practices, hospitals, and long-term care settings. A flash drive containing over 200 tools, materials, and templates accompanies the written guide.

Words of Advice: A Guide for Patient, Resident, and Family Advisors,
by Marie Abraham, Elizabeth Ahmann, and Deborah Dokken, similarly builds on an earlier publication, but greatly expands the content to provide guidance to patients of all ages, residents who live in long-term care communities, and families who want to collaborate with professionals to bring about changes in health care. People who serve as advisors generously offered their insights and wisdom that provide the "words of advice" found throughout this book.

Thanks to The Hulda B. and Maurice L. Rothschild Foundation for its generous support in producing these two resources as part of a series of leadership materials. Other titles in this series include the book, Partnering with Patients, Residents, and Families: A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities, and the video, Partnerships with Patients, Residents, and Families: Leading the Journey.

These new publications are for sale on the Institute's website.

Importance of Family Faculty in Educating Health Care Professionals

Patient and family faculty programs provide educational opportunities for health care providers, be they students or professionals, to learn first-hand from patient and family members about their experiences. These programs allow for candid dialogue outside an actual clinical encounter, while modeling collaboration among patients, families, and providers.

Many organizations embrace the concept of patient and family faculty. One example is the Institute for Professionalism and Ethical Practice (IPEP), which grew out of the success of the Program to Enhance Relational and Communication Skills (PERCS) at Children's Hospital Boston. This is an interdisciplinary educational initiative dedicated to cultivating relational competence in health care. IPEP's educational programs focus on difficult conversations occurring across a wide range of settings in pediatric and adult medicine. Its mission is "to promote relational learning for health care professionals that integrates patient and family perspectives, professionalism, and the everyday ethics of clinical practice." IPEP works collaboratively, and includes family advisors as part of its family faculty.

Does your organization have a patient and family faculty? The Institute for Patient- and Family-Centered Care offers tips for developing and maintaining a successful patient and family faculty program.

See related main article about Julie Moretz, who started a Family Faculty program at MCG.

Parents and Families Help Others While "Making Meaning" after the Death of a Child

Deborah Dokken, MPA, currently a Consultant and Family Advocate working with the Institute for Patient- and Family-Centered Care, interviewed three families who were willing to share insights about their distinctive and personal paths to making meaning after the death of their child. One family used writing, first privately and then publicly to make meaning of the death of their daughter, Nora Myers-Benner, and to provide solace to others in need. Another family started a non-profit charitable foundation in memory of their son Mattie Brown, to enhance the lives of children with cancer and their families. Rebecca's mother, Maureen Lilly, used her personal experience to work professionally within organizations focusing on cancer and hospice care, and Rebecca's sister, Anne, became a pediatric hospice nurse. Despite the differences among their experiences and their approaches to "making meaning" these three families each developed ways to stay connected to their child after death, to keep memories alive, and to help other children and their families.

Read the entire article authored by Deborah, who is also Co-Editor of Pediatric Nursing's Family Matters Series, Making Meaning after the Death Of a Child: Bereaved Parents Share Their Experiences.

Call For Abstracts for The 6th International Conference on Patient- and Family-Centered Care: Partnerships for Quality and Safety

The 6th International Conference on Patient- and Family-Centered Care: Partnerships for Quality and Safety will be held August 6–August 8, 2014, in Vancouver, British Columbia, Canada. Mark your calendars, not only for the Conference, but also for the Call for Abstract submission date. The Conference will showcase innovative and exemplary programs that are dedicated to collaboration among health professionals, patients, and families. Details coming soon about how to submit an abstract. The Call for Abstracts will be open July 1–August 15, 2013.

 National Nurses Week

National Nurses Week 2013 ~ Delivering Quality and Innovation in Patient Care ~ was celebrated from May 6—National Nurses Day—through May 12, the birthday of Florence Nightingale, the founder of modern nursing.

In honor of nurses, Robert Wood Johnson Foundation (RWJF) produced a new video, Nurses Shatter the Stereotype. Check it out.

National Nurses Week provides an opportunity to recognize and celebrate all that nurses do, particularly their key role in establishing partnerships with patients and families. The Institute often reaches out to nurses—who are on the forefront of advancing patient- and family-centered care—to find new ways to encourage patient and family engagement. You can do the same!