Patient & Family Centered Care David Seastrom RN, BSN Trauma Injury Prevention, Outreach & Education Coordinator

Objectives Recognize and understand the 4 Core Concepts in Patient - Family-Centered Care Be able to define family presence Identify ways you can change your practice to be more patient and family centered

History Began in 1962 Congressional address from President Kennedy Right to safety Right to be informed Right to choose Right to be heard 1965 “Head Start” was legislated Children with intellectual impairments were encouraged to institutionalize their children at facilities such as the “Experimental School for Teaching and Training Idiotic Children.

History 1987 - Surgeon General C. Everett Koop 1991 – EMS-C National Resource Center Children’s National Medical Center 1992 – The Institute for Family Centered Care formed 1993 – Family Preservation & Family Support Act 1994 – The Families of Children with Disabilities Act 1987 - C Everett Koop helped sponsor several national conferences on children with special health care needs. He also called for coordinated, family-centered, community-based care for children. 1991 – The National EMS-C Resource Center was formed at Children’s National Medical Center in Washington DC 1993 – The Family Preservation & Support Act was formed with provisions * Create and fund a continnum of support for family care * Use funds to create and incorporate preventative services into treatment * Broaden family definition to include biological, adoptive, foster, etc. 1994 – Provide funding to the states to support system change for disabled children What’s this related to? The American with Disabilities Act.

History Why are these important? Led the way for family / collaborative programs Women started to challenge Family advocates voiced concerns

Core Values Respect & Dignity Information Sharing Participation Collaboration

Respect & Dignity Listening to Honoring Planning & Deliver of Care Considerations Knowledge Values Beliefs Cultural Background Family perspectives & choices While all these are important and the right thing to do, showing respect also starts to lower the stress level of the patient and the family. In doing this you will also start to open lines of communication and helpful information may be gained. Also when we show caring towards out patients it helps the parents. They will carry this experience long long after it is over. Parents tell us they are more comforted and can more easily let their child go “alone” if they know they are going with someone who cares about their child and shows it, if even for a brief minute.

Information Sharing Share complete & unbiased information Share in ways that are useful & affirming Receiving info in a timely, accurate & complete form So as to participate & make decisions Sharing complete information is so very important for those patients and their families to make informed decisions. If we don’t then they miss a piece of the puzzle to make appropriate decisions. *reference mom’s kidney stone* Sharing the information in ways that are useful is of the utmost importance. Why do you think it is most people prefer a nurse to be in the room when news is delivered to patients and their families? B/c they feel they can approach the nurse and say “what did that mean”. If we don’t share information that way it’s no good. It’s like me taking you all to a Quantum Physics lab and lecturing you on the angular momentum of electrons bound to atoms and then asking you to have a discussion if they were quantized or not.

Participation Encourage & Support in participating Level they choose Care Decision Making Level they choose Non-judging / Opinion forming / etc. Participation – We ask that our families participate in their children’s care. Now obviously in sterile environments we wouldn’t, but in many many other aspects we definitely do! We at least give them the option. If the parents don’t participate and they are going home with a trach kiddo and something goes wrong, they are not going to be in a position to help their child. From my perspective most parents will jump right in and help out and will WANT to learn. Level they chose – reference ankle fx during volleyball

Collaboration Delivery of care Facility design Program development Policy development Ped Emerg Form This is typically outside the realm of providing care, but more along the lines of program and policy development. A good example of this is our PEF. We had 2 parents sit down with EMS, ED, ICU, etc. and talk about what works. This form will have to work for parents, families, EMS and hospital staff. So it behooves us to include everyone in this. Otherwise more than likely it’s not going to work for someone. Anyone ever wonder who “sits up in those offices” making decisions b/c sometimes they just don’t work in real life….?

Core Value Overview Listen to the patient & families Communication is of the utmost importance Participation at the families comfort level Working together we can accomplish more

EMS

EMS & Family Presence Why do we separate families from their children? Control “Our” ambulance Focus Multi-tasking Time Scene times, etc.

Class Participation

Who here with EMS has a Family Presence Guideline? EMS & Family Presence Who here with EMS has a Family Presence Guideline?

Who here with a hospital has a Family Presence Guideline? EMS & Family Presence Who here with a hospital has a Family Presence Guideline?

EMS & Family Presence Who here supports Family Presence during invasive procedures & resuscitation?

EMS & Family Presence Who here isn’t exactly sure how they feel about Family Presence during invasive procedures & resuscitation?

EMS & Family Presence “The healthcare field is evolving from a paradigm where the patient is expected to passively comply with diagnosis and treatment to one that emphasizes patient-provider collaboration” Guidelines for Providing Family-Centered Prehospital Care (Consensus Panel from EMS-C, NAEMT & HRSA)

Who Supports Family Presence?

Family Presence Policy Family Advisory Board Members (parents) ED providers Social Workers Chaplain ICU providers Trauma providers Child life Critical Care Transport Family Care Coordinators Administration Code Blue Committee

Are We Still Awake?

Are We Still Awake?

Family Presence Principles behind Guidelines Consistency of Practice While we attempt to be fair in everything we do, we must admit that some families get to stay with their children and some don’t Communication with Staff Attending staff have control over what happens, guidelines give others the right to talk openly about family presence

Family Presence Principles behind Guidelines Evolution Culture Guidelines will create a “guided evolution” of the culture of interaction between staff & families Culture Once we make it part of our practice, families will expect it.

Family Presence 2000 Clinical Group Recommendations Family members should be involved in primary training for pre-hospital emergency medical responders at all levels. Family members should be given the option to be present and to participate in pre-hospital care, on scenes, during transport and during transfer of care to the receiving facility.

Family Presence Cont. So What Does the Research Say?

Family Presence Cont. Dingeman, et al. – 2007 JAAP Growing trend of family members offered to be present are staying present 87% Procedures 83% Resuscitations 86% Right 94% Repeat Decision

Family Presence Cont. Sacchetti, et al. – 2005 Anals Emerg Med 7% interfered with care None significantly alter patient management

Family Presence Cont. O’Connell, et al. – 2007 JAAP 136 Trauma Team Activations 197 Family Members Participated 7 asked to leave (various reasons) Evaluation/Procedure times not altered 97% FMP had none or positive effect on decision-making 92% Improved communication

Family Presence Cont. What can we do?

Family Presence Overview While some choose NOT to be present, nearly all want to be given the option The research is overwhelmingly in favor of family presence VERY small percentage of families are disruptive If not present the option is what the families want

Family Presence Overview Many families present use their observations to conclude everything was done Families who are present are less likely to litigate Families cannot usually differentiate between an attending physician from a fellow or a resident

Family Presence Overview Families who are given the option of family presence have a more positive bereavement outcome Families who are given the option feel as though they have more control of their situation

Children’s Mercy Kansas City So here is my “home”. We are a 314 bed Pediatric Academic Medical Center with over 6000 employees and 700 specialists and subspecialists. We have 167 outpatient clinics and our dedicated specialty transport transported nearly 5000 children last year.

Level I Pediatric Trauma Center Center for Excellence in Pediatric Resuscitation Leading Cardiac Surgery Program Leading Hemophilia Treatment Center Leading Sickle Cell Disease Program International Consortium of Blood & Bone Marrow Transplant

One of a few national comprehensive liver treatment & research centers National Leader in Specialty Critical Care Transport Ped. Critical Care Fellowship Ped. Emergency Medicine Fellowship Ped. Surgery Fellowship 2007 Designated one of the top five Ped. Emergency Departments in the country Extensive Research Activities

Family Centered Care Coordinators Sheryl Chadwick DeeJo Miller Parents on Staff -NOT MEDICAL PROVIDERS Provide opportunities for families to connect with other families

Family Centered Care Coordinators Children’s Mercy Family Centered Care Coordinators Empower families to use the resources CMH provides Serve as a family voice on committees in the hospital Provide opportunities for families to connect with other families

Children’s Mercy Family Advisory Board

Teen Advisory Board Consejo de Familias Latinas/Hispanas

We then allow the staff to ask questions dealing with their experience Death & Dying Workshop Parents and family members come in and talk with staff physicians, nurses, RT, residents, etc and communicate what was helpful and what was hurtful during their experience of loss. We then allow the staff to ask questions dealing with their experience

Children’s Mercy POPS Parents Offering Parents Support Primarily phone mentoring 1 on 1 Easy to do Location not an issue

Children’s Mercy New Journeys Guide for Families From Families Services Guide Layout Paperwork Guide Coping Tips Hospital Guidelines

Children’s Mercy Family Time “Open house” on the floor so families can get away from the bedside & connect with other families

Family as Faculty 13 Families currently Focus on Resident Education PGY1 – Dinner with FAB PGY2 – Meet Family in their home PGY3 – Clinic visit with family GN Education Child Life & Music Therapy Interns Hem/Onc Residents

YOU are a piece of the puzzle! EMS Social Work Child Life Volunteers Medical Team Patient Family Chaplaincy

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