A Patient Family Advisory Council’s reduction of waiting room anxiety: I think about who’s coming after me

Mal’s story on the Patient/Family Advisory Council:

I’m the Co-Chair of a Patient/Family Advisory Council (PFAC) at Beth Israel Deaconess Medical Center in Boston.  

Several of us on the PFAC who’d been through the surgical experience at BI, in the waiting room as a patient and as a family member, found it was not a very comforting or personal experience, but was rather stressful.  One of our projects was making that experience less stressful for the loved ones waiting.  A doctor and an I.T. [Information Technology] staff member came to the PFAC and asked for our input.  Several of us shared how impersonal it was.  It was an open area, at the main entrance to the hospital.  It created extra stress with all the people coming and going constantly.  

Now there’s a new waiting area that was created, away from the main entrance, that also has a newer technology of communicating to people where their family member is in terms of the surgical process.  It’s an electronic board, so I can see, for example, my spouse is in Surgery, or, they’re in Recovery.  They give each patient a special code on the screen, so it’s HIPAA compliant [to protect privacy].  And there’s an actual person to talk to when they want to check in and a person who knows the information about their family member.   

  

In my volunteer work on the Boards of nonprofit organizations, when I feel strongly about something, I jump into it.  I got really great care at the hospital, and I also saw room for improvement.  I think about who’s coming after me.

Read another story about a Patient/Family Advisory Council.

Milford Regional’s PFAC Story, as told by Beverly Swymer [Part 1]

In June of 2012, as members of the Milford Regional Medical Center’s Patient/Family Advisory Council (PFAC), we were searching for a direction to go.  Dr. Jeff Hopkins, Chief of the Emergency Department, gave a presentation to us about the care of behavioral health patients in the Emergency Department and how the volume impacted the E. R. The patients who came to the E.R. needed follow-up care but the resources for staff to refer them to were very limited. With the deinstitutionalization (of mentally ill patients), the use of antipsychotic drugs can help to control the behavior of this patient population but this often results in homelessness and the revolving door syndrome. Patients with drug addiction and/or mental health issues and subsequent problems need active intervention and follow-up care.  They are a growing number of E.R. patients, often seen on an emergent basis.  These people are devastated; they do not know where to turn, so they seek out care and support in the E. R. and often arrive in a crisis state. The staff, not being trained in psychiatric care, aim to keep the patients safe, maintain their medicine regime and actively seek out appropriate behavioral health care support…essentially custodial supportive care while in the E.R. The result was long-term stays in the E.R. (sometimes this meant many hours or even days), which was troubling. It was especially difficult to place patients who’d been violent, children and those patients who had complex medical problems in addition to their behavioral issues as well as the difficulty of placement of behavioral health patients on the weekends.

As the PFAC Co-Chair at the time, I met with Dr. Hopkins to discuss how the PFAC could realistically have an impact on this issue.  We discussed ways to educate the community about the Behavioral Health Care crisis, and to identify ways to short-circuit the crisis step by connecting the E.R. patients to community services in a more timely fashion. This was our initial approach to define the role of the PFAC Subcommittee within the hospital: to define “better care”. We on the PFAC had a couple of meetings to discuss how to accomplish this effort. By September 2012, we started meeting on a monthly basis.

I became the head of the Behavioral Health Subcommittee of the PFAC at that time because I believed the PFAC, through collaboration with other healthcare providers, could make a difference in behavioral health care in the E.R.  I felt this issue impacts us all because it impacts health care in general as well as care in the E.R.  If ten of 30 beds are occupied with behavioral health patients, especially if occupied for extended periods of time, this impacts bed availability for all other patients. The goal of the PFAC Subcommittee was to find ways to improve care with better resources in the community and thus ultimately alleviate the impact on the E.R.

Assuming responsibility as Chairperson, my role through all of this was to get this challenging endeavor on track. Monthly meetings were and continue to be held. To develop a more comprehensive approach to this issue, we reached out to others who dealt with this patient care population. For example, we invited representatives from Case Management, Social Service, Nursing and Riverside Counseling Services to join the subcommittee in an effort to improve care of the behavioral health patient. It took a real strong collaborative approach and the PFAC was part of all of those discussions. As the PFAC Subcommittee chair, I worked with the E.R. behavioral health team to incorporate everyone’s input, obtain feedback from others and evaluated how it was all working.  I, along with other members of the PFAC Subcommittee, presented the PFAC and ED Behavioral Health Program at the Health Care for All PFAC State Conference at Holy Cross, the Massachusetts Coalition for the Prevention of Medical Errors, the Juvenile Advocacy Group (JAG) Community Breakfast and at a webinar hosted by Health Care for All.

We formed a diverse group with Dr. Hopkins, Chief of the Emergency Department, community caregivers, a child psychiatrist, Riverside Emergency Services, Nursing, Case Management, Social Service and a family member who dealt first hand with the issues of trying to find care for her son in crisis, etc

We reached out to the E.R. staff for their input and perspective on Behavioral Health Care in the E.R., asking for their suggestions on how to improve care of the behavioral health patient while in the E.R. The nurses developed a list of very helpful suggestions to enhance the care of the behavioral health patient while under their care. Some creative but simple suggested improvements included: a predictable schedule, showers, attention to proper nutrition, an opportunity to take a walk, exercise, music, etc., since some of these patients were in the E.R. for days. This effort showed the staff we were willing to listen and we valued their input.

As a result of this collaborative effort between the PFAC, Emergency Department, Case Management and Community Benefits, we received a grant from the EOHHS (Executive Office of Health and Human Services). This grant enabled us to provide an educational program for the E.R. nurses interested in Behavioral Health and to provide initial funding for Behavioral Health nursing positions. The first group of behavioral health nurses became mentors for their colleagues in the E. R.  This initiative was very well received by the nursing staff.

An integrated team was developed comprising Case Management, ED front line staff, Riverside, and other mental health care workers. Patients are evaluated during daily rounds in the E.R. Therefore they all know where each patient is in their care management and what follow-up resources could be identified. At one time, for those patients on behavioral watch or at risk of suicide, we had security guards watching over them. A program was developed to train people as Patient Safety Advisors. These people are specifically trained to interact with the behavioral health care patient in the E. R. while they waited for individualized plans of care.

Next we looked into the community for resources available to provide timely care and counseling to the behavioral health patient population. Our thinking was if we could provide opportunity for timely care and support we could short circuit the need for crisis intervention in the E.R. at 3 am.  Information was presented to our PFAC Behavioral Health Subcommittee about the Interface Referral Service of the Massachusetts School of Professional Psychology (MSPP). This service provides information about services available in and around the community and guidance in how to navigate the mental health system.  I, as well as others on the team, reached out and spoke with other communities who had successfully utilized this service. This was the first time this organization would be working in a hospital broad based outreach. In February of 2013, we signed a contract with Interface. In addition to making the information about this service available in our E.R, we notified (via letter) the schools, pediatricians’ offices, Counseling Services, Youth Groups in town, Library’s Youth Department, etc., all in an effort to make the public aware of this referral service.  This was one more step in our effort to make Behavioral Health Care better and available to our community when needed.  We’re trying to meet the patients’ needs for medication, personal needs, etc., with active intervention, not just custodial care in a hospital setting with a broad-based community outreach.

Stay tuned for Part 2.  In the meantime, read a story about other innovations by Patient/Family Advisory Councils at Milford and Beth Israel Deaconess Medical Center. 

Patient Family Advisory Councils: Two hospitals' success stories

Each of the hospitals in Massachusetts now has a Patient/Family Advisory Council (PFAC).  The hospitals described their PFACs' activities over the last year, and members of HCFA's Consumer Health Quality Council reviewed, summarized, and tallied the responses, with Deb Wachenheim's help.  The CHQC members identified two hospitals' PFACs as role models, to be emulated by other hospitals:  Milford Regional Medical Center, and Beth Israel Deaconess Medical Center.  Leaders of those hospitals' PFACs described their activities at yesterday's meeting of the Massachusetts Coalition for the Prevention of Medical Error.

Kim Munto, the Director of Risk Management at Milford, described their PFAC's activities in her presentation, elaborating on them in a later interview.  Since their PFAC members are particularly attuned to health literacy, the application for prospective PFAC members is written in Spanish and Portugese, as well as in an English version.

Milford's PFAC also completely reworked the hospital's discharge instructions, translating clinical language into terms more often used by laymen.  The PFAC's suggestions greatly clarified the instructions about medications, e.g., which ones to stop taking, which to continue taking, and in what doses.  The PFAC also stimulated changes to the forms used to accurately convey information on patients as they transitioned from the hospital to each of three extended care facilities (ECFs).  The PFAC performed several rounds of intensive review, working with the three outside ECF organizations, in an example of collaboration across healthcare organizations that is all too rare.  

To help Milford begin providing mealtime menus to patients for the first time, the PFAC reviewed the menus and the presentation of the food, and then at a PFAC meeting, ordered dinners from the menu, which were delivered to the conference room.

For Beth Israel Deaconess Medical Center, Barbara Sarnoff Lee, the Director of Social Work, and Elana Premack Sandler, Project Leader for Patient and Family Engagement, described their four PFACs as components of a broader strategy of engaging patients.  BIDMC's Neonatal Intensive Care Unit (NICU) had been the first to set up a PFAC, followed by PFACs for the ICU, the entire hospital, and Universal Access.  BIDMC also engages 100 patient advisors in pairs on committee seats, department-specific groups with embedded advisors, focus groups for patients especially concerned with a single issue, and ad hoc projects.  

A PFAC member had mentioned how much easier it was to heal when it was quiet at night.  The hospital applied best practices to quiet the patient areas, creating a notable improvement in the eyes of patients surveyed in HCAHPS:  33% more patients said it was always quiet at night after these changes (60%) than before (45%).  

BIDMC had noticed an opportunity for improvement in pastoral and spiritual support for patients, based on FS-ICU (Family Satisfaction - Intensive Care Unit) data. Following redesign efforts with feedback, the FS-ICU scores improved.  Another effort, to improve the ICU's waiting rooms, also raised FS-ICU scores.  In a ripple effect of the improvement, seeing the change, hospital administrators then awarded more funds for renovating the waiting rooms. 

These are merely a few examples of many more at these hospitals, and indeed, at many other hospitals in the state. The Consumer Health Quality Council hopes to encourage hospitals to test and adapt these practices so their patients can also benefit.

This blog post was written by Ken Farbstein, a long-time member of the Consumer Health Quality Council, and professional patient advocate at Patient AdvoCare.  

Accomplishments of Massachusetts hospitals' Patient/Family Advisory Councils

The Patient/Family Advisory Councils of Massachusetts hospitals have made some innovative changes. Here are a baker's dozen of them.

Developed a program in which all medical house officers now rotate through our Simulation Center, receiving didactic and high-fidelity simulation sessions on conducting family meetings. (Beth Israel Deaconess Medical Center)

Launched “Patients as Educators” program to share experiences with small groups of nurses and doctors (Dana-Farber Cancer Institute)

Reviewed quality dashboards and publicly reported quality measures (Health Alliance)

Reviewed quality outcomes and patient satisfaction data (Heywood Hospital)

Helped residents plan family participation in Chief of Service Rounds (Children’s Hospital)

Helped plan an “Appointment Buddy" program that provides volunteer assistance to families of children with special needs (Children’s Hospital)

Participated in training sessions with oncology fellows and residents, so physicians could learn directly from patients and families about the human experience of living with cancer (Children's Hospital)

Installed a Portuguese channel on inpatient televisions (Morton Hospital and Medical Center)

PFAC member became a "secret shopper" to go through the registration process, three members working with hospital staff on the registration, flow and patient handout information (Nantucket Cottage Hospital)

Re-vamped a discharge medication tool to be more patient friendly and easier to understand for patients. (New England Rehabilitation Hospital)

Developed the “Crisis in the Classroom” program, which reinforced the need for mental health services for the community. This program brings experts in child psychiatry and development together with parents and first-responders (teachers, principals, guidance counselors, school nurses, and law enforcement. (Newton Wellesley Hospital)

Helped to design 'the Joanie'- an improved hospital gown that is more comfortable. (Newton Wellesley Hospital)

Developed a process for families who wish to stay overnight to request a cot be brought up to a patient's room (Caritas Norwood Hospital)

Read another story about innovative efforts by patient/family advisory councils.

Thanks to Amelia Russo for compiling the master list, and to Linda Burgess, Nicola Truppin, Deb Wachenheim, and Alec Ziss as our Patient/Family Advisory Council work group members at Health Care for All’s Consumer Health Quality Council.

We've created that: Consumer Health Quality Council's Accomplishments in 2009

As the council president, I had the pleasure of making a presentation about the progress made in 2009 by our Consumer Health Quality Council, at a meeting of the consumer council and our advisory council on Wednesday, organized by Health Care for All:

We've made a lot of progress this year, thanks to the work by you and our other council members. As we start 2010, the signs point to continued progress. To name just three examples both of how well we’ve done in 2009 and how we’re set up to succeed in 2010:

You told me, this time last year, that our biggest priority was the implementation of Chapter 305. We've had notable success there. For example, consider the two work groups that I know the best from my own work: Rapid Response Teams and Patient/Family Advisory Councils. For the first time in Massachusetts, and indeed anywhere in the U.S. to the best of our knowledge, there is an early tabulation of the statewide use of hospitals' rapid response methods to promptly rescue deteriorating patients. We've created that! In doing so, we discovered the first family-initiated rapid responses. We have an emerging strategy of encouraging hospitals through recognizing the ones who've reported active use of the often life-saving rapid responses.

Second, our PFAC (Patient/Family Advisory Council) work group has also produced a first-of-its-kind useful public statewide accounting – of hospitals' plans for PFACs, and a listing of the first changes in extended visiting hours, maps of cardiac care milestones for an inpatient, washer/dryers for patients' parents, to name only three innovative changes. A strategy of publicly commending these innovative hospitals can spread these changes through the state in 2010 – with your continued help. Third, we've benefited from our new members, with more new skilled people coming on board soon. Our new members have been particularly active through our work groups. Kim Slack and others will likely join us in 2010, adding to our capacity.

Read another story about the work of our Consumer Health Quality Council in 2009.

He doesn't call, he doesn't write: Patient Family Advisory Councils for medical groups

I got an automatic phone call from my pharmacy the other day, telling me that my prescription was ready for pick-up. And an automatic phone call from our temple president about upcoming events I might want to participate in.

But during the current H1N1 scare, I haven't received an email from my doctor telling me what to do. He doesn't call, he doesn't write – does he care about me? And my daughter hasn't received an email or pro-active call from her pediatrician about it either. Why not?

There are many reasons; perhaps one of them is so obvious that no one sees it: No one told them to. No consumer advisory group said, "Doctor, in this day and age of free email, where the vast majority of your patients have an email address, it's time for you to advise them on vaccinations, prevention and treatment for H1N1 by email." Indeed, that would probably save a lot of time and hassle for the doctors' administrative staff, who wouldn't need to explain the same information for the thousandth time.

Hospitals have made many innovative changes as a result of suggestions by their patient/family advisory councils. We should encourage medical group practices to form advisory councils and hear their ideas. The time they save could be their own.

Advice: Write a note about this to your doctor and ask the doctor's office manager to make a suggestion box and put your note in it.

Read a patient/family advisory council story.

Think Olive Garden: Innovative Patient/Family Advisory Councils

The CEO of Beth Israel Deaconess Medical Center recently had the pleasure of touting a major national award for patient satisfaction won by their NICU (neonatal intensive care unit): the Family-Centered Care Award, by the Society for Critical Care Medicine. I hope to describe their advisory council's role in that in a future blog post. In an earlier post on the role of the Advisory Council for the adult ICU, Paul Levy described their use of Family Pagers:

Our Advisory Council pointed out the feeling that they had to stay in or near the ICU at all times, in case anything happened. We now provide pagers (think Olive Garden) to families that allow them to go to the coffee shop, cafeteria, and nearby shops with the confidence that we can page them if they are needed. These have received rave reviews from families, nurses, and doctors alike.

Massachusetts General Hospital has been using several patient/family councils. One helped develop a "pathway for cardiac services" that portrays the steps in a patient's treatment, so patients will know what will happen during their hospital stay. I hope to describe this in more detail in a future blog post.

At Cooley Dickinson, the annual report in 2009 on the PFAC told of another committee involving consumers that performed "a SNF [skilled nursing facility, i.e., nursing home] hand-off communication survey, which resulted in an immediate improvement in patient and post-acute provider relationships through the discharge process."

BRAVO TO THESE PIONEERING HOSPITALS!

Advice to patient advocates: Tell your families and clients to get their care at hospitals like these that actively listen and heed the patient's voice.

Read another story about innovative patient/family advisory councils.