Profiles of Patient and Family Advisors and Leaders

Family Coordinator: Tessa Billman

Tessa and Gabriella Billman

Tessa Billman is the mother—by the "gift of adoption"—of two daughters, Claudia, 20 years old, and Gabriella, 11. She is also the first paid Family Coordinator for Children's Hospitals and Clinics of Minnesota.

Claudia arrived from Guatemala, malnourished, developmentally delayed, and in need of a great deal of medical intervention. Tessa navigated the medical care system, making sure that her daughter received all the necessary interventions and Claudia thrived. Eager to repeat the experience and the rewards of adoption, Gabriella joined the family in 1998.

Knowing that when Claudia first came to the United States she needed time to "catch up," Tessa believed that all she needed to do was get Gabriella home to Minnesota and duplicate what she had done before. She knew that "internationally adopted children may be on their own developmental time table" but Gabriella retreated into her own world, and despite all efforts, seemed unable to interact with her new family. She would not smile, had difficulties maintaining eye contact, would not eat, and seemed to be regressing developmentally, at times becoming totally unresponsive.

After a year of trying to get answers (nine pediatricians and specialists later), Gabriella was diagnosed with an irreversible brain injury, resulting in epilepsy, cerebral palsy, and severe global delays. Tessa was told that Gabriella would never walk or talk, and would never care for herself. Her future was uncertain. Just two days after the diagnosis Gabriella experienced her first of many grand-mal seizures, vomited, and turned blue. When the emergency medical team arrived at her door, Tessa feared that Gabriella would not survive this horrible incident.

Over the next four years, Gabriella experienced seizures weekly—AND proved everyone wrong. She had therapy three times a week, visited multiple specialists, and learned to walk. Gabriella's medical needs dominated the entire family. Tessa was with her at every appointment, in every ambulance run, at her bedside for every hospitalization. No one else had her first hand perspective; Tessa gained knowledge of the Minnesota medical system, while becoming an expert in Gabriella's care.

In 2003, at age five, Gabriella spent seven hours in the operating room of an unfamiliar hospital undergoing innovative surgery to improve her ability to walk and correct some other aspects of her mobility problems. Tessa was not asked to contribute to the post operative plan, nor asked about Gabriella's past medical history. Despite a large visible sign in Gabriella's hospital room stating "MORPHINE ALLERGY" a nurse attempted to administer the prescribed painkiller. Tessa intervened and prevented a potentially life threatening medical error, but perceived that the system and the surgeon had betrayed Gabriella by not paying attention to documented allergies, ignoring her complex medical needs, and by not including her mother in developing the plan of treatment. Tessa attempted to speak with the surgeon about her concerns, but to no avail. This experience irreparably damaged Tessa's trust with that particular hospital and physician, but led Tessa to redouble her on-going efforts to advance the practice of patient- and family-centered care at Children's Hospital and Clinics of Minnesota, their "home" hospital.

Families as Partners

The philosophy of involving families in every aspect of care from the very beginning is essential in helping Children's Hospitals and Clinics of Minnesota deliver a true model of patient- and family-centered care. The Families as Partners Program exemplifies the commitment to this philosophy of care and encompasses all family involvement at Children's,. The Hospital respects and recognizes that staff and family bring knowledge, skills, and expertise to caring for a child, and involves families within many hospital-wide and unit-specific groups, including:

Ethics committee;
Institutional Review Board (reviewing all research done at Children's);
Welcoming Environment committee;
Unit Councils;
Lean Events;
Website Design;
Staff Education;
NICU Experience team;
PICU Experience team; and
Variety of Design teams related to expansion and redesign

Family Advisory Council

Claudia and Gabriella

The Family Advisory Council is currently made up of a diverse group of thirteen families whose children are present or past patients of Children's, four staff members, and the Chief Nursing Officer. Council members possess a wide range of inpatient and outpatient knowledge to help enhance the quality of child and family care experiences.

The members of the Family Advisory Council are dedicated to advancing the practice of patient- and family-centered care throughout the organization. They partner with staff by representing the experience of all families who use services at Children's. Members bring wide-ranging wisdom and diverse points of view, to promote positive changes and learning opportunities at Children's and in the community. Specifically, council members:

Help to develop, implement, and evaluate service and facility standards;
Communicate with management the recommendations and concerns expressed by parents, family members, parent associations, and others;
Advise on policy review;
Promote patient- and family-centered care; and
Support program development.

The mission of the Family Advisory Council is to promote family-centered care, advise, and advocate for children and their families, using experiences, wisdom, and diverse points of view, so that positive changes are made to the Children's hospital system and the community.

In 2002, Tessa was asked to tell her story at the quarterly Leadership Forum meeting of the Children's Hospital and Clinics of Minnesota. Families sharing their stories at the leadership meetings have been a tradition at Children's for many years. The hospital's recently hired Chief Executive Officer, Alan Goldbloom, listened intently. At the conclusion of her comments, Tessa provided a list of recommendations to improve the experience of care. In addition to praising the comprehensive aspects of the rehabilitation program, Tessa suggested:

Infection Control policies to make sure that toys were cleaned after each use to prevent germ transmission;
Improvement of physical accessibility throughout the hospital for children in wheel chairs;
Enhancements to transitions in care, for example from the Emergency Department to Intensive Care; and
Inclusion of patients and families when providing signage throughout the hospital.

By sharing their stories and highlighting things that worked well, as well as areas that need improvement, families help increase staff understanding and shape and improve experiences for future patients and families. Family feedback and family panels play an integral role at Children's and have resulted in improvements in many areas including: patient and family experience, medication reconciliation, medical literacy, and program and policy development. Two programs that came about from the sharing of families' perspectives are:

Employee Education and Orientation. Families share their experiences and perspectives on family-centered care with all new employees at Children's.
Medical Education — Families as Educators Program. Families share their experiences with the medical residents and students at Children's, highlighting relationships between patients and families and their medical care providers.

Although Tessa was asked to join the Family Advisory Council after sharing her story in 2002, there was no vacancy on the council until 2004, a year and a half later!

As part of her work on the Family Advisory Council, Tessa participated on the design team that created a new ambulatory care center. She felt honored—and empowered—when she was asked to represent families and patients in a hospital-wide strategic planning work group. Her involvement with that group precipitated her election as chairperson of the Council in 2007.

Family Advisory Council Chair, 2007-2008

Gabriella Billman

During her tenure as vice-chair and chair, the Family Advisory Council (FAC) created a series of pamphlets in plain talk about medical conditions or procedures, first aid, and detailed instructions about how to provide care at home, and when to call for medical advice. Some topics offer links to Hmong, Somali, and Spanish versions.

Because of Gabriella's health care needs and the demonstrated potential for medication errors, Tessa became passionate about Patient Safety. She motivated the FAC to review the Patient Family Safety Learning reports*¹ , championed family activation of Rapid Response teams, and delivered a presentation for the Minnesota Alliance for Patient Safety conference presentation on transparency. FAC members have participated in discussions around transitioning adolescent patients to the adult health care system, developed Patient/Family Safety Learning reports with the Youth Advisory Council, and supported Pediatric Early Warning System (PEWS) scores development, implementation, and education.

Families are full partners in the health care team at Children's and in creating the safest possible health care for children. Children's policy is to disclose to families what happened if their systems fail and cause harm or potential harm to a child. The culture of safety emphasizes honesty, openness, and respect for the knowledge and information of every member of the health care team, including families.

The Patient Safety Steering Committee and the Ethics Committee have had family representation for many years. Families have the option, throughout their stay, to take part in rounds with staff members. In 2009 families helped to establish family-centered rounding best practices in partnership with the Lean Resource Office.

Joy Johnson-Lind, Director of Children's and Family Services, attended the Institute for Patient- and Family-Centered Care 2008 Intensive Training Seminar in Calgary, Canada with the goal of gaining knowledge about the progressive health care organizations that had previously developed job descriptions for family members as paid employees. Children's Family Coordinator staff position was conceived and began to take root in Calgary.

Family Coordinator

In March 2009, Tessa Billman became the hospital's first paid Family Coordinator. One of her first tasks was to ask that the FAC council provide specific feedback about the importance of feeling involved and well informed in their child's care plan, ways staff can help minimize stress and anxiety, and other multi-disciplinary tips on delivering more compassionate care. Feedback was shared with all nursing unit councils and other care team disciplines, and built into individual action plans for patient and family experience improvement.

Claudia and Gabriella

All of Tessa's experiences to date have coalesced to place her in this position to "act as a central resource to enhance collaborations and partnerships with families and health care providers in caring for children throughout Children's Hospitals and Clinics of Minnesota." Tessa helps families use their experiences via the Family-to-Family Progam to provide encouragement, emotional support, and non-medical information to other families in a variety of ways. These include one-to-one matches between families and family volunteers with similar experiences and unit specific "Family Breaks" where family volunteers host informal gathering for families on a specific unit or with a specific diagnosis. She also works with the Hospital's Marketing and Communications department, the Foundation, Human Resources, Information Technology, Volunteer Services, and the Office of Quality and Safety, incorporating families throughout the hospital.

In addition to her responsibility as coordinator of the Medical Education — Families as Educators Program , Tessa has received many requests from staff members to identify and recruit families in a myriad of other diverse and exciting Families as Partners initiatives. She gets to know each family's experiences, likes, needs, and areas of expertise. This helps when she is screening, selecting, and training families for a multitude of projects, such as:

Design of the new private patient rooms;
Review of Pre-Op/PACU Flow and Process redesign on Minneapolis campus;
Foundation Corporate Volunteer Brainstorming Session;
Arts and Healing Initiative;
Nurse Residency Program;
Unit and department family testimonials;
Lean work
Standing committees and work teams;
Medical Home collaborative;
Cultural Competency Strategic Planning;

Upcoming Ventures:

Further expansion of family representatives on unit councils;
Training session for newly recruited Families as Partners family volunteers;
Look Beyond the Diagnosis Presentation developed in partnership with staff and families who attended the Institute for Patient- and Family-Centered Care Seminar in October;
Restructuring of the Physician's Directory Search Engine;
Lean Rapid Process Improvements and workshops focused on medication safety and family/surgeon communication;
Outcomes Report to be posted on the organization's website further promoting transparency;
Autism Awareness Training during "Lunch and Learn" sessions offered to all staff members;
Advocacy training for families in partnership with NACHRI;
Emergency Medical Services for Children Work Group; and
Family presentations at several upcoming conferences.

Tessa is excited about a new project that she supports in partnership with the Chaplaincy Department: Family-to-Family Bereavement Group. Nineteen families who experienced the death of a child attended training sessions geared to supporting recently bereaved families.

Tessa feels incredibly lucky; she is passionate about her work, both personally and professionally. She feels "supported by the organization, and knows that patient safety, quality of care, and process is enhanced when families are at the table."

"But", explains Tessa, "my true work [as a mother] is to get Claudia ready for the world and to get the world ready for Gabriella!"

Claudia, now 20 years old, is a certified nursing assistant and has completed all the requirements to become a first responder, an Emergency Medical Technician. Gabriella, continues to love music, time with family and friends, and school as a Minneapolis Public Schools student. She is also an accomplished therapeutic horseback rider.

Because she has severe visual impairments, frequent seizures, and cerebral palsy, and is developmentally delayed, Gabriella requires constant 1:1 supervision to meet her needs when she is at school and while Tessa is at work.

¹* In 2001, Children's replaced "incident reports" with "safety learning reports."

Learn more about the Family Coordinator position at Children's Hospitals and Clinics of Minnesota.