3ObjectivesRecognize and understand the 4 Core Concepts in Patient - Family-Centered CareBe able to define family presenceIdentify ways you can change your practice to be more patient and family centered
4History Began in 1962 Congressional address from President Kennedy Right to safetyRight to be informedRight to chooseRight to be heard1965 “Head Start” was legislatedChildren with intellectual impairments were encouraged to institutionalize their children at facilities such as the “Experimental School for Teaching and Training Idiotic Children.
5History 1987 - Surgeon General C. Everett Koop 1991 – EMS-C National Resource CenterChildren’s National Medical Center1992 – The Institute for Family Centered Care formed1993 – Family Preservation & Family Support Act1994 – The Families of Children with Disabilities ActC 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 DC1993 – 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.
6History Why are these important? Led the way for family / collaborative programsWomen started to challengeFamily advocates voiced concerns
7Core Values Respect & Dignity Information Sharing Participation Collaboration
8Respect & Dignity Listening to Honoring Planning & Deliver of Care ConsiderationsKnowledgeValuesBeliefsCultural BackgroundFamily perspectives & choicesWhile 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.
9Information Sharing Share complete & unbiased information Share in ways that are useful & affirmingReceiving info in a timely, accurate & complete formSo as to participate & make decisionsSharing 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.
10Participation Encourage & Support in participating Level they choose CareDecision MakingLevel they chooseNon-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
11Collaboration Delivery of care Facility design Program development Policy developmentPed Emerg FormThis 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….?
12Core Value Overview Listen to the patient & families Communication is of the utmost importanceParticipation at the families comfort levelWorking together we can accomplish more
16Who here with EMS has a Family Presence Guideline? EMS & Family PresenceWho here with EMS has a Family Presence Guideline?
17Who here with a hospital has a Family Presence Guideline? EMS & Family PresenceWho here with a hospital has a Family Presence Guideline?
18EMS & Family PresenceWho here supports Family Presence during invasive procedures & resuscitation?
19EMS & Family PresenceWho here isn’t exactly sure how they feel about Family Presence during invasive procedures & resuscitation?
20EMS & 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 ProvidingFamily-Centered Prehospital Care(Consensus Panel from EMS-C, NAEMT & HRSA)
22Family Presence Policy Family Advisory Board Members (parents)ED providersSocial WorkersChaplainICU providersTrauma providersChild lifeCritical Care TransportFamily Care CoordinatorsAdministrationCode Blue Committee
26Family 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’tCommunication with StaffAttending staff have control over what happens, guidelines give others the right to talk openly about family presence
27Family Presence Principles behind Guidelines Evolution Culture Guidelines will create a “guided evolution” of the culture of interaction between staff & familiesCultureOnce we make it part of our practice, families will expect it.
28Family 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.
29Family Presence Cont.So What Does the Research Say?
30Family Presence Cont. Dingeman, et al. – 2007 JAAP Growing trend of family members offered to be present are staying present87% Procedures83% Resuscitations86% Right94% Repeat Decision
31Family Presence Cont. Sacchetti, et al. – 2005 Anals Emerg Med 7% interfered with careNone significantly alter patient management
32Family Presence Cont. O’Connell, et al. – 2007 JAAP 136 Trauma Team Activations197 Family Members Participated7 asked to leave (various reasons)Evaluation/Procedure times not altered97% FMP had none or positive effect on decision-making92% Improved communication
34Family Presence Overview While some choose NOT to be present, nearly all want to be given the optionThe research is overwhelmingly in favor of family presenceVERY small percentage of families are disruptiveIf not present the option is what the families want
35Family Presence Overview Many families present use their observations to conclude everything was doneFamilies who are present are less likely to litigateFamilies cannot usually differentiate between an attending physician from a fellow or a resident
36Family Presence Overview Families who are given the option of family presence have a more positive bereavement outcomeFamilies who are given the option feel as though they have more control of their situation
37Children’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.
38Level I Pediatric Trauma Center Center for Excellence in Pediatric ResuscitationLeading Cardiac Surgery ProgramLeading Hemophilia Treatment CenterLeading Sickle Cell Disease ProgramInternational Consortium of Blood & Bone Marrow Transplant
39One of a few national comprehensive liver treatment & research centers National Leader in Specialty Critical Care TransportPed. Critical Care FellowshipPed. Emergency Medicine FellowshipPed. Surgery Fellowship2007 Designated one of the top five Ped. Emergency Departments in the countryExtensive Research Activities
40Family Centered Care Coordinators Sheryl Chadwick DeeJo MillerParents on Staff -NOT MEDICAL PROVIDERSProvide opportunities for families to connect with other families
41Family Centered Care Coordinators Children’s MercyFamily Centered Care CoordinatorsEmpower families to use the resources CMH providesServe as a family voice on committees in the hospitalProvide opportunities for families to connect with other families
43TeenAdvisoryBoardConsejo de Familias Latinas/Hispanas
44We then allow the staff to ask questions dealing with their experience Death & Dying WorkshopParents 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
45Children’s Mercy POPS Parents Offering Parents Support Primarily phone mentoring1 on 1Easy to doLocation not an issue
46Children’s Mercy New Journeys Guide for Families From Families Services GuideLayoutPaperwork GuideCoping TipsHospital Guidelines
47Children’s Mercy Family Time “Open house” on the floor so families can get away from the bedside & connect with other families
48Family as Faculty 13 Families currently Focus on Resident Education PGY1 – Dinner with FABPGY2 – Meet Family in their homePGY3 – Clinic visit with familyGN EducationChild Life & Music Therapy InternsHem/Onc Residents
49YOU are a piece of the puzzle! EMSSocial WorkChild LifeVolunteersMedical TeamPatientFamilyChaplaincy