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.  

More than we can imagine: Massachusetts healthcare payment reform

This was the testimony I delivered on June 30 to the hearings on health Care Provider and Payer Cost Trends, conducted by the Massachusetts Division of Health Care Finance and Policy:

I'm Ken Farbstein, a patient advocate with a private practice, and an author of a new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, published by the Professional Patient Advocate Institute.

Thank you, Commissioner, for the privilege of learning at these hearings, and being able to testify.

Rev. Hamilton told us that God brings us more than we can imagine. Let's imagine what payment reform will look like in practice. On Tuesday, Amy Slemmer of Health Care for All stressed the importance of transparency, as did yesterday afternoon's panel of speakers. What does that look like? In Pennsylvania, where they've had mandatory reporting of serious reportable events, that reporting has now, they can confidently say, decreased wrong site surgery, according to Mike Cohen, the head of the Institute for Safe Medication Practice. That's pretty good for patients' quality of care. And it reduces costs, because there's no need for physical therapy, prostheses follow-up visits, and so on, to try to make up for the mistake, plus the cost of doing the operation right the second time around.

What else does transparency look like? Harold Miller emphasized yesterday, as did Ray Campbell and others today, about how critical it is to get clear information on price and quality. A one-pager handed to the patient well before any surgery, stating the likelihood that a repeat operation will be needed, the cost to them, the number of similar operations that surgeon has done before, and the alternatives to surgery, would provide vital information. When we brought my dog in for a surgical decision about a lump in one of his front elbows, the veterinarian gave us very clear information about the risks, costs, and alternatives. Her information was much better than the explanations I had received about my own two surgical decisions for my eye, and for my sinuses.

Fully informed, shared decision making will get many people to choose less costly alternatives to surgery, as I did twice. The Cochrane Collaborative documented the cost savings in its recent systematic review of 58 articles in the medical literature.

Impartial patient advocates can discuss end of life decisions that are based purely on preserving dignity and the quality of life. Family members will often prefer hospice care, which is more humane and less costly than "death by ICU." My father had a long gallant struggle with Parkinson's Disease. At the end, he, and we, chose hospice care. That was definitely the right decision for his dignity and quality of his remaining life. It also saved money for the taxpayers.

Yesterday, Harold Miller told us there are 3 ways to reduce costs: prevention, preventing hospitalization, and more efficient hospital care. What do they LOOK like?

Prevention, you know about. Harold Miller also mentioned avoiding hospitalizations. Last night I went to a medical home meeting. There were pediatricians, Nurse Practitioner and another nurse educator, the office manager, 3 parents of kids in the medical practice, and me, with pepperoni pizza, Diet Coke, and champagne - to celebrate a journal article to be published on the successes of the medical home. They showed a homemade video teaching parents about a new alternative to stitches when their kid gets a deep cut. They teased the nurse practitioner who was the star of the video. Their laughter, and their warmth, is a key ingredient of the medical home. That's what home looks like. The video is about DermaBond; imagine a glue stick the doctor will use to seal a deep cut, instead of stitches. Those cuts can be treated in the doctor's office instead of an E.R. visit. No stitches need to be removed in a later visit. These, and many other changes, have enabled this medical home to reduce the E.R. use among their kids over the last four years, by one-third. That's what a medical home looks like.

Third, Harold Miller said costs are reduced with more efficient hospital care. My mother complained of radiating neck pain, so I brought her to our small community hospital's E.R. She was given a telemedicine consult with a doctor at BIDMC in Boston - a 2-way TV hookup that impressed her greatly, and ruled out a stroke promptly. That's what efficient hospital care looks like.

A patient advocate who is fully independent and trusted can help patients and their families make the difficult decisions about how to get their best health care. These images are what payment reform should look like.

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.

Not just a job: A compassionate nurse

Karen Becker's Nomination Letter:
Gail Benedetti was my nurse in the days and nights immediately following my Whipple procedure (a complex gastrointestinal procedure). After more than 7 hours of surgery, I was in no shape to advocate or care for myself. The surgeon may have saved my life but my nurse made it bearable.

Gail did everything for me, from painlessly removing my nasal-gastric tube to gently giving me a sponge bath. I wasn't her only patient but she made me feel that I was. When I woke up, she was there. When I went to sleep, she was there. Bells and lights went off. Tubes and bags needed changing. Gail was there to make it right. It was uncanny. I didn’t have to worry. My nurse was looking out for me. Because Gail took the time to explain each procedure, medication, and piece of equipment to me, I knew what to expect. That shared information was both comforting and empowering to me as a patient. When pain was an issue, Gail made it her priority to advocate for me. She truly was my angel of mercy. The memory of her unflagging compassion and competence still brings tears to my eyes. I will be forever in her debt.

During my eight days on the ninth floor the Farr Building at BIDMC, I saw Gail interact with other patients, nurses, and the medical staff. She was energetic, engaged, and empathetic at all times. Gail was equally respectful and responsive to the needs and requests of everyone, patients as well as physicians. Gail proves that nursing is not just a job but a calling.

Advice: If your nurse isn't compassionate, politely ask the Nurse Manager or patient care advocate for a replacement.

Read another compassionate nurse story.

Thanks for the source article in the Sixth Annual Boston Globe "Salute to Nurses" advertising supplement in the May 4 issue.

From Tragedy to Safer Care: A stillborn baby

Seven years ago, a series of errors befell Mrs. W. while she was an obstetric patient at Beth Israel Deaconess Medical Center in Boston, and her 9-month old fetus was stillborn. Mrs. W. herself needed a hysterectomy, and 18 days of subsequent hospitalization in the intensive care unit.

According to the Chief of Obstetrics in the Journal of the American Medical Association article, staff made several errors in her care. After she started labor, doctors discharged Mrs. W. back home, though her blood pressure should have led doctors to keep her in the hospital. When she was re-admitted at midnight, a few hours later, doctors did not consider that preeclampsia could be involved. Doctors ordered lab tests, but the tests were never sent, due to miscommunication. When the fetus' heart rate exhibited a worrisome "non-reassuring" pattern of "late decelerations," a C-section should have been promptly performed at 5:30 am.

Several factors contributed to the errors. The attending physician had been on call for 21 hours, and fatigue may have led the doctor to stick to a diagnosis despite evidence to the contrary. There were an unusually high number of women giving birth there at that time. Residents were afraid to speak up to the more senior doctors. At age 38, Mrs. W was relatively old for a first-time birth. The hospital had been experiencing severe financial difficulties, which might have affected nurse staffing levels. The crisis occurred in the early morning. Mrs. W. did not know about the drug used to induce her labor.

In the words of Mrs. W's husband, "That night, I saw residents who were afraid. They were either unable or unwilling to get the doctor, when clearly things weren’t going the right way."

As a result of the multiple tragic errors in her care, doctors and other staff aggressively have since acted to safeguard their system of care to prevent similar errors. Indeed, they were able to reduce errors by about 25%.

This improvement led the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) to honor the hospital last week with the John M. Eisenberg Patient Safety and Quality Award.

I hope the improvement will be permanent. Two factors, however, will make this doubtful. First, hospital policy continues to have attending physicians on call for 24-hour shifts, despite the Chief's clear attribution of overwork and fatigue as significant contributing factors. Second, the Chief is leaving the hospital, and it is unclear whether his successor will as strongly advocate team communication ("crew resource management," from the aviation industry).

Dr. Sachs' advice to patients and their spouses, patient advocates: Ask the attending physician, "What's going on, and what are the plans?"


Read one of our stories by a pilot who is expert in crew resource management, or read more from the discussion among doctors in the August 17, 2005 issue of the Journal of the American Medical Association.