Brigham and Women's Hospital team: "Glad to know you"

When bombs went off near the finish line at the Boston Marathon, runners and spectators grabbed their loved ones and scrambled to get out of the way.

Joshua Kosowsky and Heidi Crim scrambled to get closer.

Joshua is Clinical Director of the Emergency Department at Brigham & Women’s Hospital in Boston. Heidi is Nursing Director. Both were sitting with me at a conference room in Maryland when the horror of Monday’s carnage entered our consciousness through texts, Twitter and emails. We had a moment of silence for the victims. Moments later Joshua and Heidi were threading their way to the exit doors, en route to the airport, back to Boston and their hospital. They would join their colleagues who were now working on 31 of the 140 people injured in the blasts. Hours later more of the Brigham team would head back to Boston, with those left behind on alert to see if and when they were needed.

For the past couple of days we’ve all been together at the Institute for Patient- and Family-Centered Care (IPFCC) seminar in Annapolis. We patient advocates are here to work with some of the best and brightest people—or at least those actively striving to be the best-- who deliver care at the nation’s hospitals. Our collective mission: to see what we can learn from each other.

Yesterday morning Joshua, Heidi and other clinicians and administrators from “The Brigham”, as it’s called, were assigned to a small work group of 15 people. There were 14 from the Brigham, plus a facilitator from the IPFCC-- and me. The Brigham team had brought along their own Senior Patient and Family Advisor, Martie Carnie (I quickly saw that the team appreciates and relies on her.) So what made me the “lucky one”, the lone non-Brigham person there? Maybe it was pure geography (I’m from Rhode Island). Whatever. I felt lucky to literally have a seat at the table with folks from one of the best hospitals in the world. As to how they’d feel about having me there, I had no clue.

We went around the table introducing ourselves. Maureen Fagan, Executive Director of Brigham's Canter for Patients and Families, set the tone—the Brigham was here for ideas on tackling a challenge: treating people who come in through the Emergency Room with the same embracing welcome they’re known for giving patients who have the advance time to plan their admission. As she concisely explained things, Maureen looked me in the eye. She used my name. I felt “seen”, and included. It encouraged me, as the session continued, to offer my two cents here and there. Joshua asked how we could make clinicians accountable when they do stuff like not wash their hands…the times it’s out of arrogance, not forgetfulness. I had some thoughts on that, too, and he seemed to listen to me. Heidi described what the Brigham “welcome” should feel like. “When you come to us, through whatever route, we need to tell you, to make you feel, that you are ours.”

Later, after more key team members had left for Boston and the rest of us found a television and could begin absorbing the monstrous images, members of her team told us what a great leader Maureen is, and what clarity she brings to their work. They told me that Joshua was really one of the

Janet Razulis & Julie Celano of The Brigham conferring

good guys. That he’d written a tremendous book to help patients navigate their care in the hospital.

Today, the “day after”, our now-smaller group gathered to pick up where we had left off. Power cords snaked from phones whose charges were depleted by the morning’s non-stop texts and emails. The team gathered around iPads to watch as their CEO answered TV  news anchors’ questions calmly and thoroughly. In a world of chaos and unpredictability, the Brigham staff here in Annapolis exuded a quiet confidence…that their team was in place, doing what it was trained to do.

We’re here at this conference looking for tools and allies to achieve a more functional, responsive and patient/family-centered culture of medical care. Yet despite its dysfunction, its imperfections (and yes here are many), there is also this stunning excellence—the culmination and embodiment of massive compassion, training, service and practice. It truly is a beautiful thing.

At its heart, the root of good medical care is compassion. As Martie, the Brigham advocate, says, “we can’t always control the outcome, but we can control the experience”.

Somehow, I think the people going into the Brigham-- yes, even those who never expected to go there and entered through the Emergency Room-- will know just what she means.

Left to right, Shelita Bailey, Lynne Blech, Maureen Fagan, Rosemary O'Malley, Kristen Koch...some of the Brigham team

Rick Boothman: "The Dogmas of the Past Are Inadequate"

It's the kind of story you hear too often from medical insiders: the elderly patient should never have had major surgery in the first place. The poor medical care she received that caused her suffering and death was bad enough. Worse for lawyer Rick Boothman was when he found out out the surgeon who'd operated on her had been sued three dozen times before. But the tipping point for Boothman came when the hospital CEO angrily told him to just do what he'd been hired to do-- defend the hospital in the family's wrongful death claim. 

In this week's post leading up to the National Patient Safety Foundation Congress 2013 May 8-10, Boothman shares the story of his unlikely career change, what drives him to champion transparency and disclosure, and how he's inspired by the words of Abraham Lincoln. 

 

Who:  Richard C. Boothman, Chief Risk Officer, University of Michigan Health System

How many years attended Congress?  6 years (he's on the Board of Governors)

boothman@med.umich.edu

 

Pat Mastors: What brought you to patient safety in the first place? Can you share one iconic personal moment of impact/success/motivation? 

Rick Boothman: I actually “backed into” patient safety and for that reason, I probably see things differently than many.  In my former professional life, I was a trial lawyer representing Michigan and Ohio hospitals and doctors in malpractice litigation – I did that for 22 years and loved my work.  But during my entire time as a trial lawyer, two observations increasingly plagued me:  one, the enormous human cost of patient injuries not only to patients, but to caregivers I represented as well.  The damage to patients – at least some of the damage to patients, is often obvious – seriously altered and lost lives, etc., but the impact to our caregivers is something we don’t talk about very much, something we often don’t even acknowledge, and something I do not believe we understand very well. Litigation of course, exacerbates the tragedy for everyone concerned.  I was always struck by the magnitude of this problem across the board and the heartbreaking impact it had on those involved.  Second, not once in 22 years did any of my clients ever ask me what they should have learned from the cases I handled.  In fact, on several occasions, I DID raise lessons learned after cases were completed and every time, it was clear that in their view, my job was to defend cases, not wade into hospital business. 

The experience that tipped the scales for me occurred just before I left private practice.  I was representing a small community hospital in a wrongful death case that arose from bilateral [double] knee replacement surgeries on a seriously medically compromised 85-year-old woman who got septic [developed a serious infection] and lingered miserably for months until her death.  Doing even ONE knee replacement on this patient demonstrated highly questionable judgment-- she had problems more serious than knee pain-- the decision to do two replacements was completely indefensible.  When I checked the court records, I discovered that the orthopedic surgeon involved had been sued 32 times!  He was uninsured and had settled a recent case with some real estate from Northern Michigan.  In my opening letter to my client I urged the hospital to trigger the peer review provisions in its medical staff bylaws because this surgeon seemed both incompetent and reckless to me.  I received an angry call from the hospital CEO who told me that the surgeon “single-handedly kept the orthopedic service afloat”; he reminded me that I was hired to handle the medical malpractice claim, not create other issues. 

For years I saw how counterproductive litigation was-- that the “deny and defend” culture effectively inhibited the kind of accountability that was essential to improving patient safety.  Honesty isn’t just an ethical imperative-- as a practical matter, you can’t fix a problem until you first acknowledge a problem exists and you accept ownership of it. 

Having represented the University of Michigan for more than 20 years, having seen its vulnerable underside and inner workings, I knew it to be an organization with impeccable ethics filled with amazingly skilled and dedicated caregivers of all stripes.  When an opening arose in the legal office in 2001, I saw an opportunity to make a difference across a whole community of caregivers. I wanted to do something that would logically ameliorate some of the pain I saw in both patients and caregivers, and move the focus from responding defensively to patient injuries to a proactive effort to improve safety as THE gold standard for addressing the malpractice problem that plagued the community of patients and the people who care for them.  My original plan was to take two years, put the architecture in place and return to my work as a lawyer.  So much for planning, eh? 

We are all in this together.  We will only fix these problems together.  Litigation by its nature is counterproductive to that reality and I was determined to do my best to shift the focus to make sure we learn from our patients’ experiences. 

Pat Mastors: What is the most encouraging thing that’s happened in the past year in Patient Safety? The most concerning?

Rick Boothman: The most encouraging thing that I’ve observed is the decided shift and attention to these issues across the board.  Groundbreaking people like Lucian Leape and Don Berwick and Bob Wachter and Peter Pronovost and a host of others have been at it such a long time-- such a stunningly long time-- and it’s encouraging to see now much more openness, and even a sense of urgency to patient safety.  The other encouraging development is the increased attention being paid to the very fabric of our patient/provider relationships.  We must move to more of a partnership with our patients.  I hate the concept of informed consent for instance, because in most places, informed consent simply means getting a form signed.  Even when it’s done well, informed consent is consigned to special events like having a procedure or surgery done.  The quality of the conversation between caregiver and provider should be uniformly high and tailored to the patient’s needs and situation-- not relegated to a conversation to be had only when a patient is scheduled to have surgery.  I’m encouraged by the dialogue that is growing around this.  Lastly, I am encouraged by growing attention to the well-being of our health care workers of all stripes.  I believe the evidence clearly demonstrates that healthy and happy workers, people who find joy and meaning in their work, actually provide more thoughtful and safe care to our patients.  I believe we have taken our health care providers for granted for far too long and again, if we’re all in this together, we need to pay closer attention to their well-being, physical and emotional well-being. 

The most concerning thing to me is our health care community’s seeming addiction to quality and safety thresholds dictated by outside agencies.  I deeply respect the work that the Joint Commission does for instance, but at some level, don’t you think we all should be embarrassed by the fact that organizations like the Joint Commission [TJC] even exist?  We need greater ownership of these safety and quality issues.  I’m aware that for many hospitals, simply getting through their surveys is considered an accomplishment.  Thresholds set by outside agencies should represent the floor, not the goal.  I sit on the board of the Michigan Hospital Association Keystone Center’s Patient Safety Organization and reportedly, there are hospitals in Michigan that acknowledge no sentinel events [an unanticipated death or serious physical or psychological injury to a patient not related to the natural course of the patient's illness] year after year.  Amazing, isn’t it?  I suppose we should be knocking their doors down to understand and replicate what they’re doing, eh?  Accountability remains a challenge. 

Pat Mastors: What will you uniquely bring to the discussion at the Congress?

Rick Boothman: Being not grounded in the old status quo, I think I can bring a fresh set of eyes and a perspective that others might not have.  I can question why we do what we do easier than someone whose very identity is tied to their roles as established in the status quo.  One of the most important quotes that resonates with me are Abraham Lincoln’s words to the Congress in 1862 when he said, "The dogmas of the quiet past, are inadequate to the stormy present. The occasion is piled high with difficulty, and we must rise-- with the occasion.  As our case is new, so we must think anew, and act anew.  We must disenthrall ourselves, and then we shall save our country.“   I am impressed constantly by the level to which we are too invested in the status quo.  As Lincoln said so eloquently, we MUST disenthrall ourselves and think anew and act anew because our challenges are new. 

Patience is NOT a virtue when people’s lives are at stake.  We are far too patient with ourselves.  We are far too embedded in the old ways.  We need a greater sense of urgency around efforts to improve.  

Pat Mastors: Where would you like to see more energy focused?

Rick Boothman: I would like to see greater efforts to understand how we create perverse incentives that operate at cross-purposes to our overall goals.  Fee-for-service reimbursement predictably favors care delivery systems and medical judgment that is wasteful, for instance.  Certain professional compensation models foreseeably encourage some caregivers to cut corners.  I would guess, for instance, that no hospital root cause analysis would be robust enough to consider listing the manner in which we compensate surgeons as THE root cause for why some surgeons think it’s acceptable to have two cases proceeding at the same time in two different operating rooms.  We need to be more thoughtful about how incentives drive behaviors that put patients at risk or use valuable resources in meaningless ways.  I would also love to see far greater emphasis on the huge component of our population whose health care needs are not served at all, or are grossly underserved.  It’s immoral that in a country as wealthy and gifted as ours we have kids who never see a pediatrician. 

The University of Michigan Health System's open and honest approach to patient injuries, patient safety and claims has been featured on National Public Radio's Weekend Edition with Scott Simon, All Things Considered, and Marketplace, the New England Journal of Medicine, CBS News, CNN, MSNBC, the New York Times, the Wall Street Journal and many other media outlets. In 2005, Boothman advised then-Senators Clinton and Obama in the formulation and introduction of their MEDiC Act.

Patty Skolnik: In Her Own Words

In the weeks leading up to and during  the National Patient Safety Foundation Congress 2013 May 8-10, I'll be guest-blogging for the NPSF Congress website and cross-posting here. (this post should be on their site as early as tomorrow). I'm excited to be profiling patient safety champions and programs, using their own words to acquaint the broader community with their stories, efforts and successes. There are so many of you out there doing great work; I'd love to know all of you better, and I know the world would be as inspired by your work as I am! Once the Congress is over, I hope to continue with these profiles on this blog. Please share as you see fit to help connect the patient safety universe.

Who: Patty Skolnik

Executive Director, Citizens for Patient Safety, Denver, CO

Member, board of Governors, NPSF since May 2012

CitizensforPatientSafety.org

Patty@CitizensForPatientSafety.org

Twitter: @SkolnikPatty

Pat: What brought you to patient safety in the first place?

Patty: The death of our only child, Michael, in June 2004. Michael was 22 years old and was going to college when he passed out one day. A neurosurgeon looking at test results of Michael’s brain, said a cyst was blocking his cerebral fluid and causing his brain to swell to life-threatening levels. He told us Michael needed surgery within 48 hours.

I checked out the profile of the neurosurgeon on the website of the Colorado Board of Medical Examiners. Nothing unusual came up. What I didn’t have any clue about was that this neurosurgeon was being sued for the death of another patient in Atlanta and had operated on the wrong disc. He had also operated on and disabled another patient in Atlanta.

After my husband David and I had left the hospital for the night, the neurosurgeon got a signature from Michael—who was on heavy medication-- on a consent form to do brain surgery. When we got back to the hospital the next morning, Michael was already in the operating room. The procedure was supposed to take three hours. Michael was wheeled out six and a half hours later.

They didn’t find any cyst. But we soon saw that six hours rooting around in our son’s brain had caused tremendous damage. Michael lost the ability to walk, speak, eat, became partially blind. He was paralyzed except for spastic movement of his right arm and hand. Over months in the ICU he suffered from hallucinations, blood clots and many infections. It was absolute torture for him. Our son died of massive organ failure, 32 months after the surgery. We were devastated. But we had vowed to Michael, who’d been going to nursing school before this all began and had loved the field, that we would leave health care better off than we found it. So we started Citizens for Patient Safety, and I now teach and present to groups around the world. I’m trying to bring that mission to life every day.

Can you share an iconic moment of impact, success or motivation?

Patty: The realization that patients and families like ours had no meaningful access to important information about their doctors made us set out to change the law. We wanted physicians’ malpractice history to be available in a quick online search.

We had to bring some reluctant groups on board…the Colorado Medical Society, the state’s largest malpractice underwriter, and on both sides of the political aisle. But I met with them, said “I’m a mom, could you please watch a short video about our son” (it was a segment from the Today Show). Everyone eventually came on board. We had to do it, to create a resource every family might need one day.

The governor signed The Michael Skolnik Medical Transparency Act in 2007. David and I then lobbied for two subsequent patient safety bills that also passed. Another one is pending. Today I do advocacy training around the world.

Pat: What is the most encouraging thing that’s happened in the past year in patient safety?

Patty: For me, shared decision-making and informed consent are the foundation of patient safety. Patients need to be part of the team, the team that has to live with the outcome. I had been doing consumer training, and still do that. But in the past year the door to the provider world is opening up wider to patient advocates. More and more I’m working hand in hand with medical professionals, even participating in grand rounds in hospitals. In August of last year I presented to the board of the New York State Association of Hospital Trustees, nearly 500 decision-makers in health care. The key to having an impact is in how we as patient advocate leaders present ourselves. Not to “shame and blame” and point a finger, but rather by asking what the problems are, and how we can resolve them together.

Pat: What’s the most concerning thing about patient safety in the past year?

Patty: That people will lose hope. There is so much to do. But as Winston Churchill said, “Never, never, never give up”. We had that quote posted next to Michael’s bed. Progress in patient safety is coming slowly, but we have to keep going. The other thing I worry about is that we veterans who have been working in patient advocacy have a lot of wisdom and experience. We’ve learned how to “play in the sand box” with others. But we have to mentor younger people, to teach them all we’ve learned…to pass the torch to the next generation, so the improvement movement keeps going.

Pat: What unique skill will you bring to the NPSF 2013 Congress?

Patty: I’m a networker. I put the right people together. Sometimes they may seem like strange bedfellows, but there are common passions and complementary skills or capabilities. I’ve been able to do this several times. I think we all have to look for and assist others who can further our mission.

Pat: Where would you like to see more energy focused?

Patty: I’d like to see more patient and family representation at conferences that are talking about patient safety. Many advocates who would like to attend don’t have the employer support or financial resources to participate. So I’m hoping there will be ways to work on this. 

Parts of this profile are excerpted from my forthcoming book, Design To Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives.

NOTE: Patty Skolnik is also among a handful of patient safety advocates (including Helen Haskell, Rosemary Gibson and others) whose collaboration with Medstar Health is being featured in the forthcoming documentary film: Breaking the Wall of Silence. Film production funds were just successfully raised on Kickstarter.

Know a patient safety/engagement "Island of Excellence"  that deserves recognition? Please suggest in comments.

What Kind of Doctor Is This?

My phone rang a few weeks ago, the morning of January 26th. It was my brother saying "Mom has cancer in her spine. I'm bringing her to the hospital this afternoon. They're operating Monday."

I threw my stuff in my suitcase, jumped in the car and drove back home from the conference that moments before had seemed so important.

But before I left, I spoke at length with the orthopedist who'd delivered the diagnosis and would be doing the surgery. I called him on his cell phone, which I could do, because he'd given my mother the number (and with assurances I would use it judiciously). It was a Saturday morning. Dr. P. spoke to me for half an hour, answering my zillion questions in a calm, thorough and detailed way-- what you might expect from a family member. Only he wasn't family. In fact I'd only met him once before, five or six years earlier, when mom saw him and got a diagnosis of spinal stenosis, a painful narrowing of the spinal collumn made bearable in her case with injections.

When I got to the hospital, mom was already propped in the bed, a bit dazed, clearly not having fully processed that at 82, she'd be undergoing major surgery and an uncertain prognosis. I looked around the room. I couldn't be sure, but this might have been one of the very rooms my father had stayed in seven years ago, when he'd entered for routine surgery on his neck, and died six months later from complications of an infection.

The next day Dr. P. came into the hospital early to visit my mom. I was calling from home and felt bad that I'd miss a chance to talk to him in person. He said he'd stay and do some work, and wait for me to get there. (This is Sunday morning, remember.) I drove up with my husband. While mom was out getting a test, Dr. P. sat across from us and answered the next zillion questions I'd come up with since we'd last spoken.

Monday at noon, I walked with mom through the pre-op process, and finally let go of her hand as she was wheeled into the OR. The surgery was supposed to take three hours. Six and a half hours later, Dr. P. (who's been in the OR since 7 AM; it was now 6:30 PM), came to my mom's room, where I was awaiting word. He told me things in the OR had gotten tricky. He pulled mom's films up on the computer, showing me the area of tumor he'd cut out. How he'd had to tease the cancer tissue off of the nerves that feed her legs, and allow her to walk. He showed me the metal pins and screws he'd had to use to shore up mom's vertebrae-- because the bone had flaked when he touched it. Mom was now in the ICU, he said, on a ventilator, at least for overnight, because her blood pressure had been funky during the whole procedure. Could I go see her? Yes, he said, I'll walk you there.

So we walked...through the crazy labyrinth of corridors you find in urban hospitals, to the ICU, where Dr. P. went in ahead of me, made sure mom was settled, and then brought me in. He answered a couple more questions. He had to leave town for a few days, he said, but would be guiding Mom's care through his colleagues, and I could text or call him. He left. It was nearly 8 PM.

The days turned into weeks, and mom struggled, but was recovering as well as we could hope (strong Dutch genes). I did text Dr. P. about concerns along the way, several times. From wherever he was, he made things happen, things that needed to happen. 

We had to reschedule mom's follow-up visit with Dr. P., because of a snafu on our end. He texted me a question: What rehab hospital is your mom in? I texted back and got no response.  The next day, I went in to see mom. Guess who came to see me last night? she said. Who? I asked. Dr. P.!, she said. He came last night around 9 o'clock.  Really? I said, did he come to check your incision? I was thinking, how nice...he did the re-check here, saving her the trip. No, she said, he didn't examine me. He came on his way home from the hospital, and just sat on the bed next to me, and held my hand, and asked how I was doing. We just talked, for about half an hour.

That doctor is Dr. Mark Palumbo or Providence, RI. He doesn't wear a superhero costume, and I doubt he can walk on water. But he is a great doctor, and a Superstar human being.

As a patient advocate, I've seen the best and worst medical outcomes. My dad died in the hospital at 76, but my older brother was saved three years ago in that same hospital after surgery for a grim cancer diagnosis. I know mistakes happen in hospitals, and harm occurs, because trying to fix that is the stuff of my work these days. I understand a lot of the harm happens because there are so many hand-offs to a variety of staff, and tasks that providers are juggling, and that perfection isn't attainable. But the biggest asset of a hospital-- the biggest determinant of good care-- is the people who provide it. Doctors like Mark Palumbo, and Mary Ann Fenton (mom's oncologist) and Dr. Tom DiPetrillo (radiation oncologist), and the many, many kind nurses and staffers who've touched my mother's life and helped our family, humble me with their compassion and kindness.

Yes, it's something of a miracle that six weeks after her surgery, mom is in less pain than before, and can actually take a few steps without a walker. She is on track to take us up this month on our Christmas gift to her: her first cruise, along with me and my two daughters. She's hoping to find a bridge game while on board.

What do you-- can you-- say to the people who saved your mother's life?

2013 Resolutions for Hospitals: “Let’s Go, People!”

US Surgeon General Regina Benjamin, MD

 The end of the year is jammed with big medical conferences, aimed at improving healthcare quality. In Baltimore last month, I and a small tribe of patient advocates were thrilled to join CMS (the Center for Medicare and Medicaid Services), the Partnership for Patients, several other sponsors and nearly 1,300 “thought leaders in American health care quality” for QualityNet 2012.

So what were the opportunities/marching orders we came up with for 2013?

1)    Patients can help fix health care. Use them.

2)    Hospital C-suite types are still worried disclosing medical harm to patients will lead to lawsuits. Please get over it. It just isn’t so.

3)    Many hospitals (you know who you are) aren’t trying hard enough to reach performance goals (PfP goals are to reduce hospital readmissions by 20 % and healthcare-acquired conditions by 40 % by the end of 2013). You need to step up. If you can’t do it, one patient advocate has a simple solution for you. (It’s at the end of this post).

Sitting in the audience, I loved much of what I heard. There was Jessie Gruman, a multiple cancer survivor, offering her take on the big buzz-phrase in health care: “patient engagement”. As she rightly points out, the millions of dollars invested in her various treatments are dependent on HER engaging to find the right doctors, choose the best treatments, manage surgeries, drug treatment and care delivery. Never mind the medical, lifestyle, emotional and spiritual gauntlet she has to manage in between. In the absence of electronic health records (still not ready for prime time in many respects), the smooth operation and integration of one’s care REQUIRES the patient to engage. In other words, patient engagement isn’t a pleasing option, like sour cream with your baked potato. Without patient engagement, the potato doesn’t get cooked.

Few people have earned their stripes on this topic as much as Gruman. Founder and President of the non-profit Center for Advancing Health, she’s beat back five life-threatening illnesses, including stomach cancer diagnosed just two years ago.

Three of her most Tweet-worthy points:

1. “We (patients) know mostly nothing about health care. We don't want to know. We approach on a need-to-know basis.” (Gruman has 11 physicians she has to see twice a year, so she needs to know a lot). Not one physician, she says, has ever communicated with another. “This is not a good idea.”
   2. Despite all the hoopla over IT, “there is no ‘killer app’ that will make us [patients] engage”.
   3. “Engagement is not compliance". (Love that one.)

Virna Elly then told us what it was like to have lived with type 1 diabetes and chronic kidney disease for most of her life, and a successful kidney-pancreas transplant eleven years ago. “I was a Medicare and Medicaid beneficiary by age 32.” Her plea: “We need more than a line at the end of a conversation or pamphlet telling us to ‘ask questions’. We need time to process and absorb, then ask questions. Why don’t you ever ask ‘what do you think of the information we gave you’? Why don’t you follow up? You need to meet patients at their level, how they need [information], when they need it.”

Poised and articulate, business suits mostly covering their accumulated battle scars, these were just a couple of the well-chosen patient presenters whose presence, learnings and good sense  were warmly received by a receptive audience. By all means, let’s work on developing this partnership in 2013.

Tim McDonald of UIC talks "transparency"

Disclosure and Transparency are here to stay. Embrace it! We (patient advocates and providers) had a bunch of workshops during our three days in Baltimore. In the first few minutes, we’d brainstorm topics, after which we’d break into small “table discussions”. People could vote with their feet, joining the group and topic of their choice. At our standing-room-only table, a lively exchange on “patient engagement” proved how much work there is to do. A hospital CEO (by all accounts a very intelligent and well-meaning CEO) posed her concern: her hospital’s risk assessor continues to insist transparency and disclosure (coming clean to patients/family when a medical mistake is made) increases the risk of a lawsuit. NO NO NO!  This is a gross fallacy, perhaps perpetrated by the “ACME Risk Analyst Association” (I made it up, but you know what I mean) for their own (guess why) purposes.

The plea I’ve heard from patients echoes the findings of a bunch of studies: Often, all an injured patient and family may really want is to know what happened and why, perhaps an apology, and to receive a reasonable monetary award (see story on the Malizzo family, below). In an effort to achieve that, dozens of states have passed what are called “I’m Sorry” laws. They allow a physician to discuss openly an adverse outcome with a patient and express empathy. The University of Michigan Health System pioneered this approach back in 2001. When medical harm happens (and it does, everywhere), they investigate, notify patients, and offer compensation when employees are found at fault. The health system says it’s had fewer lawsuits, lower liability costs and faster resolution of medical-error cases since the policy was implemented.

Yay! Results! Some HENS (Hospital Engagement Networks, contracted to deliver on PfP results) and hospitals presented data that show they are doing good work, able to put aside conflicting agendas to work together and deliver results that save lives. How great is that? We applaud the hard work it takes and celebrate this success. Not just for the lives saved, but because it proves it can be done.

There was much celebration of successfully instituting “hard stops” to early elective deliveries (EEDs, in the medical acronym lexicon). A good thing indeed, but described in some circles as “low-hanging fruit”. (No disrespect, but simply ending elective deliveries prior to 39 weeks’ gestation doesn't require as much teamwork, nuance or organizational culture change as, say, making sure patients leave the hospital prepared and equipped to manage their care post-discharge.)

Fact is, as some grumble, some hospitals are resisting the PfP objectives. They have no results to show. They haven’t joined the “patient engagement” bandwagon, either too frozen, too uncertain, or worse, too arrogant to dig in and do the work. Heck, they’re hoping the bandwagon will go the way of the stage coach: a product of its time, but merely a transient chapter in history. (And what, exactly, happens when the PfP contract expires at the end of 2013? No one is sure.)

Barb & Bob Malizzo at QualityNet2012

Bob and Barb Malizzo of Hobart, Indiana, whose presentation ended the conference, have a few words in response to this attitude. Their moral authority comes at a terrible price. Their 39-year-old daughter Michelle, mother of two little children, had entered the hospital in 2008 for a routine liver stent replacement and suffered brain damage from an anesthesia overdose. She was put on life support, and died nine days later. In the wake of this devastating event, the hospital’s chief quality officer, Tim McDonald, did the best he could do. He told the Malizzos he’d find out what happened, did so, disclosed it to them, apologized, changed hospital policy around quality control during anesthesia, and worked to make them whole again. Today, the Malizzos are part of the hospital’s quality improvement efforts. They not only weigh in on cases at the same hospital where their daughter died, but travel to conferences with McDonald and present “the layman’s perspective”.

I sat with Bob and Barb at the end of day two of the conference. They are a warm, sincere and engaging couple, though their grief over losing their daughter is never more than a word or gesture away. “What did you think?” Bob asked me of the last two days’ events. “Well”, I began, “it’s great that the patient perspective is such a big part of this.” Bob looked pointedly at me. “What about the hospitals that aren’t stepping up?” he said. “For every one that’s working on getting better, a bunch of ‘em are dragging their feet.”

I looked at him. “You have a point.” It was clear he had something in mind. “You’ve been a business owner,” I said. “You’ve even been mayor of your city. What would you do?”

He leaned in. “When people don’t perform, when they don’t do the job they’ve been hired to do, there’s only one way to go.” He beckoned me closer. “You fire their ass.”

Ah yes, there's that. 

Is this little-mentioned option really an option? Do you want the board of your hospital considering such decisive measures? If so, maybe you should let them know.

Or-- what are your best ideas to achieve the PfP goals within the next twelve—now eleven-plus-- months?

Because the clock, as they say, is ticking.

A Fix for Fractured Family Syndrome

Today, in the spirit of "holistic" health being about more than medicine and a lot about spirit, I offer our family's answer to "fractured family syndrome". Try it; it won't hurt.

Back when our youngest was seven years old, we were as crazed as any two-parent family who worked outside the home while raising three kids. Mornings were such a mad dash I actually showed up to work once wearing two different-colored shoes. Just getting dinner on the table was an Olympic event. Worse, our middle child, while she adored her big brother, had taken a distinct dislike to her little sister, and relished every opportunity to show it. For all the times we caught her in an eye-roll or a mean word, I knew there were dozens of snarky moments we missed.

The holidays loomed, filled with obligations, to-do lists, and long lines at the post office. 

The only thing missing was any spirit of Christmas.

One day, shortly after rescuing the guinea pig from the heating vent where she'd been chased by the dog (don’t ask), I called everyone to the kitchen. Adopting my best don’t-mess-with-me “mommy” voice, I told them this Christmas we were going to do something new. Each of us would write a letter to our family. We would say what we loved about each and every member of the family. No negative stuff (sternly intercepting older daughter’s furtive glance at little sister). We would read the letters out loud on Christmas Eve, after a dinner we would all pitch in to cook together.

The moaning began right away, and didn’t stop. For the next two weeks I’d ask in a steel-hand-in-velvet-glove kind of way “how’s that Christmas letter coming along?” Sagging shoulders, massive sighs and moaning rose to a new art form. The kids probably wouldn’t have followed through except for their dad. Jim's Greek ancestors knew a thing or two about standing tough and being obeyed. (Which was pretty funny, considering privately he grumbled more than anyone).

The youngest skipped around happily, eager to share what she’d written. With her babysitter’s help, she had dashed off her letter a week before Christmas. My letter was done early too. (Gotta say, just thinking of what I would write to these four people put a smile on my face, through what would normally have been the most stressful days of the year.)

December 24^th began the final countdown. Jim (fortified with a smidge of Irish whiskey) and the older two kids were in separate rooms, finishing up a letter they were by now convinced would be conspicuous by its absence.

We sat at the dining table, with white tablecloth, candlelight, the “nice” dishes, the works. In the middle of the table sat a small pile of envelopes. Christmas music played softly. The logs in the fireplace crackled and settled. After dessert we cleared the table, leaving only candles and the envelopes. The youngest, invited to begin, grabbed hers from the pile, took out her letter, and proudly read what she loved about her sister, her brother, her mom, and her dad. Her sister went next, speaking into a suddenly profound silence that arose from a fear we'd miss hearing nice things about ourselves from the people who knew us best. By the time mom and dad read their letters, smiles had become tears.

The next year it took less convincing to get everyone to write their letters. As the kids grew, and their writing skills and life experiences expanded, they even got a little competitive. Whose letter would be the funniest? The cleverest? Which would make mom cry the hardest? There was the year our outwardly tough-and-capable middle one told us about the struggles she was having with friends at school. The time our youngest told us how powerfully traveling made her appreciate things about home. The year the oldest came home from college having just lost his friend to a hit-and-run driver. When his turn came to read, his voice dissolved as tears flowed. He let us in on a deep pain I think he would have otherwise worked to “control”. How must it have felt to have his whole family stand to wordlessly embrace him?

We don’t get to choose what bad thing in life might befall us. Tomorrow is never a promise. It's one reason I love our Christmas Eve ritual. Once a year at least, I know I've said all the things I “wished I would have said”.

I now have a box of letters going back 14 years. Our daughters today could not be closer. I wonder what role those letters have played. Some day I will put all the letters together, in order, a formal chronicle of a family growing up together and figuring things out along the way.

Or maybe I’ll just keep them in the box. There’s plenty room for more.

It's here: Drafting National Agenda for Patient Advocates

Cross-posting with Regina Holliday...an invitation. Please comment and share!

Dear patient advocates, e-patients and caregivers,

We’re reaching out with an invitation to design a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!

Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time to change the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do say that no one’s listening to? What  are you doing that works, that you could share with others? Please read below and add your 2 cents – or your 73. 

Regina Holliday painting: will all groups
pitch in their ideas and help?

The more of us take part, the more we can accomplish and more impact we can have. Thanks!

Background:

In an effort to stem the tide of unacceptable medical harm, the federal government’s Partnership for Patients initiative seeks to reduce healthcare-acquired conditions by 40 % and 30-day re-admission rates by 20 % by 2013. In pursuing this admirable goal, and as part of the group’s contractual mandate, the PfP has been reaching out to obtain the input of patient and family representatives. Additional healthcare improvement initiatives are in process from a variety of institutional, government, consumer and private stakeholders, some of which are funded by $1 billion in Medicare Innovation grants. 

In an effort to ensure consistent interoperability and accessible information about our care, the folks in consumer engagement at the office of National Coordinator of Health Information Technology are working to involve the patient voice in patient data access.

The patient advocate community, meantime, is a passionate but fractured group of “one-offs”, consisting largely of individuals and small organizations scattered throughout the nation. Some work on legislation, others on a variety of issues such as hospital-acquired infections, informed consent, and implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Fueled in many cases by the pain of a personal loss to medical harm, many of us toil in obscurity, under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities.

We in the advocate community applaud the recent first steps toward sponsoring our participation in the national conversation about quality improvement. Examples are the payment of some advocates for travel expenses to attend critical meetings of the PfP, and in the case of the October PCORI conference, the providing of travel expenses and a stipend. However the inclusion of the patient voice remains in a tentative stage. Without more widespread and robust inclusion of the patient/advocate voice, from the waiting room to the boardroom, the true “partnership” between patients and providers will remain of small benefit to either.  

Frankly, despite the best intentions of groups working “to include us”, we are impatient. We recognize that these provider groups are operating with the most sincere of intentions, and may be working under contractual and/or cultural constraints. However we patients are not. The same autonomy and lack of affiliation that has proved frustrating economically  allows us to be nimble, quick, and potentially more effective because of it. And though we have so far lacked organization and unified focus, we recognize how achieving these traits will elevate our capacity and rightful status as an equal partner in forging the future of health care.

The Partnership “With” Patients Summit in Kansas City in September 2012 offered a promising glimpse of how patient advocates can effectively catalyze the pace of this change. The PWP brought together a range of participants, including patients, providers, thought leaders and industry representatives, to network and share best practices.  Conceived, promoted and funded though the tools of social media, the Summit also underscored the promise of social media to capture, convey and distill forward-thinking ideas from a broad range of people committed to the same goals. We who attended saw how exciting it would be through technology and social media to “crowd-source” a focused, common, national patient advocate agenda —taking contributions from the “many” that artfully create a “whole”—an agenda that can be embraced by the widest possible group. 

One side of whiteboad filled in by participants
during Partrnership With Patients event in KC

The seeds of this concept – and some early thoughts around structure and specific goals—were in fact “crowd-sourced” during an open brainstorming session at the PWP Summit, facilitated by Summit organizer Regina Holliday and Pat Mastors. It is the intention of post to present these ideas to “kickstart” discussion, suggest how we might organize them into survey questions, gather the widest possible input nationally from the patient advocate community, and craft a working agenda around which all of us can rally.

Your activities will not be limited by the agenda that’s ultimately produced. All of us will continue to pursue our respective endeavors and opportunities to have impact. 

Those unfamiliar with social media will not be left out of contributing. Steps are already being undertaken to insure patient voices from all demographics and geographies are included.

Please note this is a volunteer effort! We need your help…and hope you can be patient with our mistakes.

PWP Notes: (I’ve taken some liberty with order to organize it better)

1)    We need a name that’s inclusive of Patient/Advocates/Families and their representatives, one that’s used consistently by all in speeches, blog posts, conferences and conversations. Ideas? Do we need our own acronym? Or do we find acronyms problematic?

2)    We need bullet points and consistency of message.  Perhaps 3-5 priorities for year 1, others for year 2, etc. We build on progress. Success is more actionable with well-defined priorities.

3)    Potential suggestions of these 5 priorities:

a.    Cleanliness. The right to see hands cleaned by every person who touches him/her. A request to clean hands will be supported.

b.    Access to patient/clinical data.  We should always have access to physican’s notes, test results, etc. (SPM “Open Notes” study results support physician buy-in). This will also lead to shared decision-making.

c.     Dignity. A patient’s physical privacy will be respected. Care providers will introduce themselves by name. If the patient is conscious, a procedure will be explained and permission to proceed granted before being performed.

d.    Transparency. Cost, care and quality metrics (frequency of procedure performed, infection rate, et.) should be publicly disclosed. We should be supported in asking questions.

4)    How do you get “harmed patients” in the room? A concern of the group is that often the patient “representative” on a panel or a conference is someone who’s worked with harmed patients, or written about them, but hasn’t personally experienced being a patient with no medical connections or colleagues. There needs to be transparency (and formal disclosure? re: who is representing the patient voice in every setting.) Ideas?

5)    Funding, time parity and stipends. How do patient advocates get compensated for their time and expertise? Is it reasonable to let the free market create value? Should there be a more concerted (formal and funded) effort to identify and vet participants? Who’s responsible for creating a new job category? Who should pay and how?

6)    How do we develop/deploy patient “market power”?

a.    A “virtual collage” with faces of every advocate (or lost loved one) the group represents could be powerful (think virtual “AIDs quilt”). Can this be made into a poster or other piece of collateral that member advocates could print off and display at public meetings, a visual affirmation that “I represent thousands?”

b.    Should we host an online petition to represent our numbers? 

c.    Once agenda is agreed upon, do we want a social cause “icon” we can wear like a wrist band or lapel pin?)

7)    Should we pursue a national project, like a “Stay Well” card for patients that includes bleach wipes (effective in killing C.diff spores)? Or encourage florists to provide flowers and bleach wipes? Should we pursue a private sector partnership to accomplish this? (though this would likely happen down the road, I’ve reached out to the Clorox Company for a conversation). Are there other potential projects?

A thought I’d like to add…AHRQ is pursuing a patient reporting website to be built by the Rand Corporation, where a we could report an instance of medical harm…a wonderful potential driver of quality improvement.

            I think of advocates like Helen Haskell, and the panic of feeling in real time that you’re losing someone you love, and that no one will listen. I suggest a “panic button” on a poster on the wall in each patient’s room. It would have a phone app and a toll-free number connected to this reporting database. These reports would be anonymous but you’d have to agree to submit a full report later. Maybe each hospital could choose to assign a person who’d pick up on such calls in real time. Or maybe to start, the data just accumulates to flag dangerous hospitals/units/providers and identify patterns. But it would absolutely create more patient-driven and better accountability/transparency of patient harm.

Next Steps: We’ll be creating a survey through Traitwise.com (Regina got them to help —yay!) to begin capturing your thoughts and get to the next level of organization. In the meantime some possible questions are below. Please feel free to respond with general thoughts in the comments field.

Possible, sample questions:

1)    Do you want to be part of a national patient advocacy group?

2)    What should this group be called? (choices a,b,c?)

3)    Please rank national actions priorities (rate 1 through 5, 1 being do not support and 5 being you support this item strongly)

Cleanliness

hand washing campaign, bleach wipe campaign, no long sleeved uniforms or lab coats, just say no to long ties in the care setting, etc

Data access

Demand access to your data by USB, CD or download, etc?

Dignity

Photo ID for patients/caregivers and medical providers, Medical records with visual avatars, etc?

 

Transparency

Yelp for providers, resources like faircare, HCHAPS awareness and hospitalcompare.gov etc?

4)    How important is it to ensure patient participation is included in every meeting on policy or process? (scale 1-10)

5)    Should representatives be vetted by some process? By whom? (choices) By a metric? Klout Score/Google Results/Certification Process combined?

6)    Should they be paid? By whom? (choices)

7)    How much time can you devote to this cause in tandem with your own work? (choices)

8)    What specific skill or work can you (and are you willing to) offer to this group? (Tweeting, blogging, hospital board experience, training, speaking, etc).

9)    How much do funding limitations impact your capacity to offer the above?

10)  If funding weren’t an issue, what percent of your time would you be wiling/able to devote to a national patient advocacy agenda you believed in?

We look forward to hearing from you! Please post your ideas in the comment section below, or at ReginaHolliday.blogspot.com

-Pat Mastors and Regina Holliday