Showing posts with label Pat Mastors. Show all posts
Showing posts with label Pat Mastors. Show all posts

Tuesday, April 23, 2013

Ilene Corina: “I couldn’t believe it when the doctor said ‘no’.”



Ilene Corina, PULSE of New York
The National Patient Safety Foundation (NPSF) annual Congress will bring some 1400 patient safety champions from around the country to New Orleans May 8-10 2013, to collaborate, brainstorm, teach and learn. As guest blogger for the NPSF Congress, I'm privileged to share the amazing stories of some of the champions of patient safety who'll be attending. This profile will cross-post on the NPSF Congress website this week.
Who: Ilene Corina
What: President, PULSE of New York
Member, NPSF Board of Governors, 7 years 
ICorina@aol.com
www.pulseofny.org, www.patientsafetyconsultants.com  
Ilene Corina has experienced the best and worst in health care. Her first child bled to death after a routine surgery. Her agony intensified after his death, when the surgeon who’d dismissed her concerns about her son's bleeding post-surgery refused to take her phone calls. But it was another event years later that would propel Ilene into a lifetime of patient advocacy. Today she believes that in order to stay on top of health care, there is no substitute for sitting at the bedside of a patient.
Pat Mastors: What brought you to patient safety in the first place?

Ilene Corina: Most people think it was the death of my first child, Michael in 1990, who bled to death from a tonsillectomy, that sent me into the work of patient safety, but that's not true.  I was in too much pain then. The impetus was the feeling of helplessness years later when my youngest child needed surgery.


Matthew was born severely premature at just 23 weeks. His team in the NICU was amazing, and he survived. But when he was three years old, and I needed an anesthesiologist for his surgery in 1996, I was told I couldn't choose the anesthesiologist myself.  Even though my son was born premature, had 24 hour nursing care and lung problems, and I went to meet the anesthesiologists in the weeks before his surgery with his list of medications, lung x-rays and medical records. When the doctor said "no"-- that I would have to wait until the day of surgery and see who would be available-- I was stunned. The system was taking away my right to choose a doctor for Matt, after I'd helped get him over the painful humps so early in his life.  I was determined to change things-- or at least be heard. I knew it was time, right there, to change the rules, were I ever to need to do this again. 
 

The joy in all of this is that Matt not only survived being born so early, he had no disabilities and today is a healthy young man in college. I credit that to the partnership between me and his medical team, back when he was born. I like to think I experienced the worst in healthcare and I experienced the best. I now want people to know what I know.

Pat Mastors: What’s the most encouraging thing that’s happened in the past year in patient safety? The most concerning?
Ilene Corina: The work that I am doing on Long Island is growing.  Our Patient Safety Advisory Council has grown and we have looked at patient safety as it pertains to individuals, not just a society as a whole. Some of the groups I have worked closely with are people with disabilities, adults with low literacy, transgender patients and teen moms.  All our work is at the grassroots level. I learn more than I can teach, and that's exciting!  We are teaching about patient safety, and then learn what it's like to walk in their shoes, what their obstacles are, and how they’re navigating them. Then we develop tools to help them feel more empowered and improve their care.  We hope to help the people who work in the healthcare system understand what we have learned and incorporate our findings into their work. 
  
I think the most concerning thing is still the lack of funding available for our type of work.  There are hundreds of community members representing breast cancer support, HIV/AIDS, Autism, veterans and bullying, but not enough representing patient safety.  It's hard to grasp or show the full scope of the need when there are only a few of us working on the changes.

Pat Mastors:  What will you uniquely bring to the discussion at the Congress?  
Ilene Corina: I am not presenting at the Congress but I will be looking for collaboration...NPSF is the leader in bringing the patient and families voice to the table.  I like to think that we do the same at PULSE,  bring everyone's voice to the table.

Pat Mastors: Where would you like to see more energy focused?
Ilene Corina: Two areas. Our Family-Centered Patient Advocacy is growing and our small classes fill up now. I would love to hold classes more often.

I also think that the people who make the big decisions in the hospital setting may be losing track of what goes on at the bedside. I feel obligated to spend a certain amount of hours a year with people I do not know at their bedside so I can watch independently what happens and practice what I preach for others to do. Do they wash their hands or introduce themselves to the patient?  Are they giving out pills in little paper cups and not asking the patient her name?  Is the doctor asking the patient questions and having the patient answer appropriately?  Does the nurse seem stressed?    I need to know what is happening at the bedside.  If problems need addressing, I will write to the hospital and I also blog about my experiences. These are things no one can see regularly unless someone is willing to plant themselves at the patient's bedside…and I am willing! 


Sunday, April 14, 2013

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)

 
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.

Monday, November 5, 2012

National Agenda for Patient Advocates?


Coming soon (fingers crossed): an invitation in your email, favorite social media site, and posted on the wall where you hang out. It will include survey questions asking you where we can go together as patient advocates. It begins: "We’re reaching out with an invitation to create 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 for change in 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 you keep saying that no one’s listening to? What  are you doing that works, that you could share with others, if only there was a way to do it, or a way to get paid for the time involved in sharing it? Please read the below and add your 2 cents – or more. The more of us take part, the more we can accomplish and more impact we can have..." 

Partnership For Patients Retreat September 20, 2012, Baltimore, MD
(That's me in blue, behind Regina Holliday's painting) Second row, third from
left is Teresa Titus-Howard, who joined us the next day in Kansas City.

This post is a preview "heads-up", with a little background so you'll know where it came from.  
Where did it start? With the federal Partnership For Patients. (On the left is a photo of the core work group.) It developed further at the Partnership WITH Patients (a new grassroots organization) Summit in September.
Partnership FOR Patients work group discussing
"The Moral Imperative" of preventing harm, Sept. 20, 2012

Both groups are working on common goals-- to reduce preventable harm to patients, and to include the voices of patients and families in policy-making and events. The former is a federally funded organization. The latter was an off-shoot of the first. The former has funding and smarts to be effective. It's been working a plan to reduce medical harm by 40 %, and 30-day hospital re-admissions by 20 %, by 2013. IT IS HARD and SLOW WORK getting 5 or 6 thousand hospitals to row in the same direction, especially since government agencies must operate in a climate of committees, asking permission, forms in triplicate, crossing T's and dotting I's. They're trying to bring more and more patient/family voices into the mix, but it's slow going (see above about committee work). The people involved in PfP are wonderful. Committed, smart...the best we could ask for. But "nimble" and "agile" they can't be. By culture or by contract, it's their lot, working for the government (they know it; they wish it weren't so).

Frankly, we patient advocates are impatient. We feel we can offer a lot more, faster. The problem is the patient advocate community, while passionate and committed, is largely a fractured group of “one-offs”. We're made up mostly of individuals and small organizations scattered throughout the nation. We work on different issues: legislation, hospital-acquired infections, informed consent, 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. Most of us were co-opted into this work by the loss of someone we love. We toil in obscurity, largely under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities. It's also hard for organizations to interact with us when "us" is so loosely defined. How can we tap our own numbers and collective passions, talents and energies? How can we inject ourselves usefully into this important work?

The "Partnership With Patients" Summit was evidence that our greatest asset in delivering on these goals might be social media. The Summit itself was conceived, planned, and executed using the tools of social media (Facebook, Twitter, Blogs) to get the word out, structure the event and fund it. An eclectic bunch of 70 or so patient advocates, providers and others from the full spectrum of patient advocacy carved out the time and funding to attend. The conference was produced largely by a tireless powerhouse, "Arts Advocate" Regina Holliday of Washington, DC. (For those who don't know her, Regina lost her husband Fred in 2009 to kidney cancer, leaving her with two little boys and a burning frustration at being denied Fred's medical records in time to advocate for him before he died. She painted a mural depicting this frustration and now presents, paints and speaks worldwide for patient advocacy.) As she writes about the Summit in her blog "We proved it was possible for a loose confederation of patients to gather and organize with little time and little funding.  We were nimble. Each benefited from the expertise of the other. Most of all we proved this could be done.

"Remember where this saga began?", she writes. " On May 22nd , we were told there was no funding to gather patients to talk about goals of the Partnership for Patients campaign.  Pat Mastors and I thought we had to do something to change this.  Kathy Nicholls helped create a website and we began to plan.   In the months hence we worked with the team from Weber-Shandwick [the PfP contracting vendor] and the Partnership for Patients team from CMS to open up communication between an ever larger group of patients.  Representatives were able to come to our Kansas City summit from both Weber-Shandwick and CMS." 

The PWP Summit also showed the power of new "crowd-funding" web platform Medstartr.com to overcome funding challenges. Regina posted a project there, offering shout-outs on Twitter and Facebook, plus her paintings, as rewards to backers. The project was funded at 219%, raising $10,948.00. HealthTechHatch and the Society for Participatory Medicine also hosted a travel fund, raising another $6,0000-plus dollars to provide 9 travel scholarships. Cerner donated the conference space.
Regina Holliday, Pat Mastors
The "Un-conference": great ideas, great energy

In the halls at PWP- facing us in the center is 
Teresa Titus Howard, 
Deputy Group Director, 
CMS Innovation Center



My "Ignite" Presentation at 
PWP Summit.
(Note to self: don't wear black 
when standing 
in front of a black curtain)
At the Summit, more than a dozen of us (including e-Patient Dave deBronkart, Society for Participatory Medicine President-elect Michael Millenson and others) shared "Ignite" presentations (20 slides, 5 minutes). It was exhilarating to be on stage to present our views on how the patient/family voice can improve health care (at most events, we're lucky to be in the audience.) In other sessions, attendees more experienced with public speaking and using social media tutored others. An "un-conference" began in one room with attendees brainstorming solution to given topics; we immediately broke into small groups based on like passions. We came and went as the dialogue compelled us. There was not a single "death by PowerPoint". 



Meet-ups in hallways, restaurants and lobbies turned into information exchanges, friendships, collaborations and lessons in using social media. And everywhere on the backs of jackets there were paintings from the "Walking Gallery", each of which tells a unique story of the wearer's (often unfortunate) interaction with the medical system. Regina painted most of these herself (including several in the hotel the evening before the conference started). Though we didn't need them quite as much in this crowd of peers, they present  a "face" to the struggles of our advocacy and a tribute to those we've lost.
Jackets from the "Walking Gallery"

One page of white board takeaways
On the last day of the Summit, Regina and I hosted a session on the future of patient advocacy. What could we, should we do, together? We recorded the crowd's ideas on a white board. There was overwhelming support for the concept of developing a unified agenda. We took photos of the white boards and are working off of them to produce the survey we will ultimately bring to you. 

So what do you say? What do you think about "crowd sourcing" a focused agenda for the patient advocate community? Would you want to be part of it? Would you help?