Marty Makary, MD: What's Next After "Unaccountable"?

Marty Makary MD, MPH and me at
the National Patient Safety Congress May 2013

In his New York Times Bestseller Unaccountable: What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care, Johns Hopkins cancer surgeon Marty Makary reveals that the U.S. medical system, in many ways the best in the world, too often allows bad doctors and systemic flaws to go unchecked.  A dramatic and startling video trailer accompanied the book’s September 2012 release. Many of us in the patient advocate community were pleased to see a medical insider publicly validate concerns we'd been talking up for years. But as the book gained media attention, Makary braced himself for pushback from his medical colleagues. 

I was introduced to Makary last year by my friend Patty Skolnik, whose tragic story of losing her son to medical harm is told in the Unaccountable book trailer. Makary was later kind enough to read and provide a comment about my book. When we both ended up attending this year’s annual Congress of the National Patient Safety Foundation, I had a chance to sit down with him and ask about his work. 

I found Makary thoroughly accessible, genuine, and committed to the ideas he writes about. At times during our interview, like a surgeon taking a moment to ponder the consequences of each stroke of the scalpel, he chooses his words with great care. It's a trait that must serve him well in the OR, commenting on live television (he lends medical opinion to CNN, Fox News and others), and in that tricky place where challenging the medical profession to which you've devoted your entire adult life might just harbor consequences.

The following is edited for length.

Pat Mastors: In your book, Unaccountable, you go public with some of the dirty underbelly

of what happens in medical care. Was there a tipping point that made you decide to write it?

Marty Makary: Not really a tipping point. The idea goes back quite a while. When I was in school getting a Masters degree in public health (I took time off during medical school to get this degree), I was talking with one of my mentors about being a surgeon, about going through the surgical training. And they said, it’s going to be rough, and you’ll have no time to do research, and you’ll see a lot of unethical stuff going on that’s going to bother you. And rather than trying to change the system as a resident, and risk losing the opportunity to be a surgeon, do your job, focus on being a good surgeon, write down stories as you go, and then when you get done, do the research and pull it together. So that's what I did. As for the timing, when I heard all the demagoguery going around about the Affordable Care Act, it made me so frustrated to hear the political pundits miss the boat, talking about how to finance the broken system. And I thought, you don’t just need to find ways to finance the broken system, you need to fix the broken system-- the preventable harm, the medical mistakes and the wide variations in quality.

Pat Mastors: What kind of pushback have you gotten since releasing the book?

Marty Makary: Retired doctors wrote me after the Wall St. Journal article appeared. One of them said he’d never seen a medical mistake in his entire career and he thinks that I crossed the line and did a big disservice to the general public. I told him if he’d like to read the book I’d be happy to sit down and discuss the book with him. And he said, he hadn’t read it. I’ve braced myself for reaction, but by a ratio of 9 to1, the feedback has been positive. And then right as the book came out, the Institute of Medicine released its report that up to 30 % of medical procedures may not be necessary. So that lent some urgency to the message.

Pat Mastors: Are you comfortable with being so public on this topic?

Marty Makary: I feel very privileged to have had media outlets come to me over the years for medical opinion or comment. This developed over time from a lot of my research over the years, and relationships cultivated. I actually turn down a lot of media opportunities. It’s just not in-line with what we’re trying to accomplish.

Pat Mastors: In the book, you talk about a doctor during your training very popular with patients, but privately referred to by colleagues as HODAD ("Hands of Death and Destruction"). Have you heard from him?

Marty Makary: Has not gotten in touch with me. 


Pat Mastors: Does he know who he is?

Marty Makary: We went through incredible detail to make sure the information in the book was not traceable.


Pat Mastors: Is he still practicing?

Marty Makary: (Pause.) I’m not sure if he’s still practicing. 

Pat Mastors: You have to be very careful, don’t you? 

Marty Makary: It’s always hard to challenge assumptions in a very profitable industry. Health care represents 20 cents on every US dollar. There are many stakeholders. But I think the only thing that’s really advanced many industries historically to get better is people questioning what’s going on. I feel privileged just to be a part of this conversation. Many others have been asking the questions I’ve asked, but often they’re not physicians or clinicians. They’ve been spot-on, but have been written off with “well, you’re not a physician”. Maybe it’s the same message, but from different voice.

Pat Mastors: How has your life changed since the book came out?

Marty Makary: Many physicians groups and hospital ratings agencies have invited me to speak to them, and members of Congress have said some of this stuff makes so much sense, can you help us figure out how to discuss legislation. Since the book came out I get an invitation a day to speak somewhere. I probably do one a week, and squeeze in another in the same area if it works.

Pat Mastors: Would you like to do more of it?

Marty Makary: I love being a doctor more than anything else in the world. And I want to be a good role model for the students and the trainees. And also it’s fun and rewarding and exciting, and it’s what I trained to be. I’ve had many opportunities, and it would be easy just to “give it all up”, now that every hospital wants a chief quality officer, and I’ve had many requests to consider that. But for now, I enjoy being very clinically busy. And it gives me credibility in talking about complex cases and differences in patient populations in different hospitals, because the most common reflex people have when they know public reporting is on the horizon is they say “my patients are sicker and our problems are more complex”. So I can speak to that notion with credibility.

Pat Mastors: We come to conferences like this, collaborating on quality improvement…but does our work really seem to be moving the dial on quality? What is it really going to take for there to be significant culture change?

Marty Makary: I’m excited to see some small steps in changing the culture. Behaviors that were acceptable when I was a resident are no longer acceptable today. And unfortunately when hospitals allow one bad behavior to go without accountability, it sets the standard for accountability for the entire organization, and says “that’s what you can get away with.” It’s very disruptive for culture. So there are some good changes in the culture of what’s acceptable and what’s not.

And then you see these studies that show we were only looking at the tip of the iceberg with medical harm, and there haven’ been noticeable improvements, and I couldn’t agree more. And I think taking care of patients on a regular basis has taught me that there’s talk and there’s action in safety. And we’ve suffered from bad science in safety. And now that we’ve learned how to measure it, we’re asking now what do we do? And I think we need to do something highly innovative and highly disruptive from an innovation standpoint in the same way other industries have done it. 

Pat Mastors: Can you give me an example?

Marty Makary: In education, we’ve got this horrible burden on society which is the tremendous cost of higher education. You need a quarter of a million dollars now to send your kid to many of the good schools out there. Well, this one guy at Stanford is making his classes totally available to the public, all the course and tests and feedback, and he got 160,000 students to sign up for it, this class that he just made freely available. He didn’t recruit those people, they saw the opportunity. He’s now talking about reducing the cost of higher education by 90 percent over the next 10 years. That’s a highly innovative and disruptive intervention. We need something like that in health care. We need a whole new look at transparency that measures, captures, and feeds the data back. We need external peer review, something I wrote about in JAMA last week. We can’t rely on internal peer review because it’s contaminated by the local politics of an organization and a department. If you only have one surgeon that does chest surgery, how are you going to internally provide per review of those complications? You need external peer review. External peer review might have prevented these instances of egregious overtreatment, like hundreds of patients getting unnecessary stents, and other things.

Pat Mastors: What do you think you uniquely bring to the dynamic of quality improvement and culture change in health care?

Marty Makary: (pause). I see myself as an observer of a movement. Of people that are on the front lines of health care saying “this isn’t right…we need to do something differently”. And in Unaccountable, I almost present myself as a journalist sharing first-hand accounts. I don’t claim to be the leader in this effort to make health care more honest and transparent. But I think we in the medical profession should be very proud that doctors are stepping in to say we are over-treating patients so frequently...that we’re seeing these exciting things like Choosing Wisely, where physicians are coming up with a list of treatments that we need to warm patients about if they’re recommended to them. The external peer review process I wrote about in JAMA is being modeled in a few places. All these steps help.

I think that the wisdom to make health care safer exists; we’re just not listening to it. And I say we as doctors and nurses…we all say we all know how to make health care safer, but our wisdom is not being solicited. We know what to do, we just don’t feel management and people at the policy level are empowering us to re-design care. We feel that that we only own a small piece of the care process, whereas we used to own the entire delivery of the care.

Pat Mastors: You said you see yourself as an observer. But are you also a catalyst? Do you think this book has changed the dialogue?

Marty Makary: I’ve been very pleased that a lot of doctors have come up to me and said thank you for speaking up about what I’ve been watching as a disparity “in our local area” for decades. I’ve had hundreds of nurses contact me saying I was fired or let go or threatened because I spoke up about somebody who was doing unethical things. I don’t condemn many things in life but I have come out very strongly against hospitals for firing nurses for speaking up about safety…and doctors too. And that’s the whole problem, is there’s been almost a gag on the whole subject. When one nurse gets fired for speaking up, it sends a message out to every nurse around the country: speak up and run the risk of losing your job. It’s an intangible risk, but it sends a horrible message. And we need to be moving the other way. We need to be saying “tell us your stories”. We need to create a safe place and give you counseling to help you with the trauma of seeing this harm.

Pat Mastors: So are you shaping up to be a champion of nurses?

Marty Makary: I’m a big believer in peer-to-peer champions. But it’s been a very nice privilege to be welcomed into their  [the nurses’] circles.

But the thing that brings me the most joy is watching the light bulb go off with medical students…challenging things that don’t look right. Improving the poor communication that leads to harm. The lack of humility. It’s hard to measure in databases but can have huge impact with younger students.

Pat Mastors: How about Marty Makary personally?

Marty Makary: It’s busy, because I’m still trying to find time to operate 2-3 days a week, and see patients in the clinic another day a week, and work with students and research fellows and projects that will have high-impact value in medical literature. But the thing I love most about traveling outside is what I learn. I find out which hospitals are using best practices and learning a lot. If I were to re-write the book today it would probably be a bit different because I learned so much from the feedback from the book. You realize, for instance, sometime a small hospital in the middle of nowhere has completely different struggles, and things we talk about don’t always apply to them.

Pat Mastors: What is the next step?

Marty Makary: Right now I’m just trying to learn about day-to-day struggles, and find out why doctors are burning out. I’m also learning more about frail patients and why their conditions don’t tolerate many medical procedures due to this frailty. This is a big area of opportunity to learn about.

Pat Mastors: Will you write another book?

Marty Makary: I’m thinking about it.




We'll keep you updated on Marty Makary's endeavors.

I also had a great conversation this week with e-Patient Dave deBronkart, author of Let Patients Help. Next on Islands of Excellence, Dave shares the "secret sauce" that makes him so successful in spreading his message of patient engagement through his international keynote speeches.

Helen Haskell: Where is the Patient Safety Movement Going?

Helen Haskell

Who in the patient safety movement does not know Helen Haskell? She has been an iconic trail blazer since an agonizing experience in which "we entered the hospital with two children and came out with one".

For many of us working on patient safety, back when we were first trying to make sense of our own loss, Helen was one of the first people we reached out to. She ushered us into a community of people who made us feel we were not alone.

What you may not know about Helen is that her training as an archeologist offers a unique lens through which to see the evolution of patient safety. This interview will cross-post this week  on the website of the annual Congress of the National Patient Safety Foundation (NPSF).

Helen Haskell

President, Mothers Against Medical Error

Years attended NPSF Congress: 7

Haskell.helen@gmail.com

www.advocatedirectory.org

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

Helen Haskell: My life story really breaks along the lines of the new millennium.  Before the year 2000, I was an archaeologist and late-life graduate student working on a dissertation in West African prehistory. I had been in various parts of the world of archaeology for a long time. I had an undergraduate degree in Classics from Duke, an MA in Anthropology from Rice, and had worked in Rome, Israel, Africa, and the southeastern US.  I had taken several years off to be with my two children, high achievers of whom my husband and I were really very proud.  But in November of 2000 everything changed. We took our 15-year-old son to the hospital for an elective medical procedure to correct a congenital defect of the chest, pectus excavatum, a relatively common condition in which the breastbone does not grow straight. We thought it was a routine procedure, but things went wrong. We entered the hospital with two children and we came out with one. 

It was a searing, unspeakable experience.  Our son had slowly died from a severe medication reaction while his nurses and residents seemed unable even to respond to our pleas for help.  I was stunned at the disorganization we had witnessed and felt that my son’s death would be meaningless if we did not do all we could to change this situation. And that is really what has propelled me forward: the overwhelming need to find meaning in what would otherwise be the senseless loss of this child who we thought was going to be a rising star of the next generation.

I was fortunate enough, if you want to call it that, to be one of a group of patient safety advocates who came along at a moment that was ripe for reform. The Institute of Medicine report on medical error had just come out and while there was a good deal of resistance to the numbers it cited, there was also growing momentum for change. We were able to ride that wave and make the patient’s voice part of the process. There have been many moments that seemed iconic to me – moments when it felt as though we had tapped on a door that had been sealed shut for years only to watch in amazement as it slowly creaked open.  For me personally, some of those early moments happened when the medical interests in our state dropped their opposition and became supporters of our patient safety legislation; when the state endowed a chair of patient safety and named it for my son; and when our infection disclosure bill passed the legislature unanimously and we then watched similar legislation pass in state after state.  Nothing is necessarily permanent, but we felt, I think correctly, that successes like that meant that the patient safety movement was here to stay.

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

Helen Haskell: The past couple of years have been very exciting.  In some ways it feels as though the field of patient safety has literally exploded. Many of the goals we have promoted for years suddenly seem to have become accepted – things like public reporting, infection surveillance, checklists, disclosure of adverse events, and even just the idea of coordinated effort to prevent hospital-acquired conditions.  Patient engagement is finally getting its due, although there is still a good deal of confusion as to how to go about it.  A great deal of this forward movement is due to the Accountable Care Act, which provides both the impetus and the funding for initiatives like PCORI and the Partnership for Patients.  But I think it is also true that we have finally reached a tipping point.  Patient safety is in the air.

My biggest concern is the ongoing problem of overtreatment. While overtreatment is beginning to be addressed in initiatives like safe birth programs, I worry that there is still too little momentum.  We live in a society that is steeped in the idea that medicine has a cure for everything and that incentivizes overuse by both patient and provider.  We can’t have safety until we have moderation, but I think we have a long way to go before the concept of moderation in medicine is considered a virtue.

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

Helen Haskell: I have always felt that having a background in the humanities and social sciences provides me with a different and useful perspective on medicine. As I think all patient advocates do, I always scan the horizon, trying to see how the pieces fit together, but at the same time my natural way of looking at things is through a deep historical lens. When we get discouraged, it is good to keep that in mind that change is always slow. Big reform movements like civil rights, women’s rights, and conservation were decades in the making, with many setbacks. I am not saying that slow is good, but I do think we need to view our cause as a social movement rather than the remodeling of an industry.  Medicine is more than just an industry, and patient safety involves large, comprehensive issues that reach far beyond safety into human rights, human dignity, and human kindness.

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

Helen Haskell: In a word: transparency. The consumer movement has always focused on the idea of transparency, and for good reason. The immediate, practical reason is that transparency is something that outsiders can affect through the public process, without having to make unwelcome judgments about medical practice. But transparency also affects quality quite directly. The transparency we have now is really very rudimentary, but it has already had a big effect on practice.  It forces measurement, self-assessment, and accountability. It is the lever through which mountains can be moved. 

Helen Haskell is president of Mothers Against Medical Error, a member of the NPSF Board of Governors, and a director of Consumers Advancing Patient Safety, the Nursing Alliance for Quality Care, and the Institute for Healthcare Improvement.  She has collaborated with Consumers Union on patient safety issues, including hospital-acquired infection disclosure, since 2005. She has been working in patient safety since the medical error death of her son Lewis Blackman on November 6, 2000.

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.