Wednesday, June 19, 2013

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.

Friday, June 7, 2013

Angelina Jolie and the Life-Saving Eye Lift

I get the feeling Angelina Jolie and my friend Aurora would like each other. Both are successful, busy working moms who go out of their way to help others. While Angelina shines on the red carpet, Aurora is more the person who’d be styling her hair. She runs one of the most popular hair salons in our neck of the woods.

Both women opted recently to strip to a hospital jonnie, allowing a surgeon to grab a scalpel and whittle away and discard their breasts. Breasts that fed their children, gave them pleasure, and were part of them for decades…until the day they weren’t.

By now, you know about Angelina, how she watched her mother die young from ovarian cancer. Angelina shared a gene with mom that could make history repeat itself; or even more likely, attack her through her breasts. It was no contest, decided Angelina. Her kids needed their mom. The breasts would have to go.

Aurora has no idea if she has the breast cancer gene. She was nine years old, living in
Puerto Rico, when her mom put her and her three sisters on a plane and sent them to New York to live with their father. But apparently she’d never arranged it with him. The girls were settled in a state orphanage. Foster homes followed. Some acting out followed. (Both Angelina and Aurora have come a long way since then.) But Aurora, like Angelina, figured things out, and worked her butt off to succeed.

I know Aurora’s story not just because we’re friends, but because we women chat the whole time while we’re getting clipped and coiffed. Who’s the best doctor, babysitter, carpenter? It’s a “grooming circle”, where we share stories and exchange wisdom. It probably has its cousins in the Amazon and the Outback.

A while back Aurora told me she was going to get her eyes done. “Just this saggy skin”, she said, tugging at her upper eyelid, working way too hard, I thought, to find loose skin anywhere on her 115-pound frame. At least, I knew, she would have the benefit of knowing which plastic surgeon to go to. She’d been seeing, touching and evaluating their work for decades. In the confessional of the grooming circle, Aurora has probably amassed enough insider knowledge of plastic surgeons to start a consulting business.

Patrick Sullivan, MD
So off she went to Dr. Patrick Sullivan of Providence, who’s won accolades as one of the top plastic surgeons in the United States. Dr. Sullivan met with Aurora and learned what she wanted. Then, he sent her away. First, she would have to get a full physical including a mammogram. Working 12-hour days left Aurora little room to squeeze in an appointment, but there was no choice: no physical exam, no eyelids. Aurora wasn’t worried…she’s active and athletic, eats mostly fish and vegetables, and doesn’t drink or smoke. How could anything be wrong?

Only it was. Cancer in both breasts. Plunged abruptly into a blur of big next steps. Telling the kids. More biopsies. A salon to run, clients to re-arrange. A will. The lumpectomy comes back with bad margins. Try it again? Her children are terrified. How many times will she have to go under the knife before she can wake up without the dark horse of cancer stalking her? Surgeries that chip away at her body and mind, and shape the cadence of her life?

An agony of choice, made alone, a husband long out of the picture. The surgery is brutal. I visit her days later and she’s a tearful mess.  She raises her shirt. I see smooth skin ending in puckered scarlet crescents. Drains carry fluids into plastic bags. Reconstruction will have to wait until she heals. I want to hug her, but can’t.

But she is strong. Three weeks later she’s back at her salon, taking clients. Her surgeon
Aurora 3 weeks post-surgery
says they got all the cancer…no need for chemo and radiation.

And she is grateful. “Thank God I got that mammogram.” Most plastic surgeons, she says, would just take your money. “They don’t care”, she says. “But Doctor Sullivan saved my life.”

A Booming Business

2012 saw a record number of people undergoing cosmetic procedures. More than 14.6 million procedures were performed in total, five percent more than the year before. How many plastic surgeons insist on a full physical before raising their scalpel? Not enough, apparently. For all those people pondering a surgical route to greater beauty, I asked Dr. Sullivan some key questions you might ask as well.

Pat: Why do you ask clients to get a full physical?
Dr. Sullivan: I want my patients to have a very safe experience with their surgical treatment. We have managed to find and uncover a number of medical problems with this approach.  It has caused us to have to cancel or postpone a number of surgeries, as we did with Aurora; it leaves us with sudden holes in our surgery schedule but that is always very secondary to the patient's well-being.

Pat: How often do clients not come back when you say you require that?
Dr. Sullivan: We have lost a number of patients because they don't want to comply for a variety of reasons.  We try to explain to them how it is for THEIR benefit but some do not want to invest the time and effort. 

Pat: How many have had the exam and learned they have underlying health problems?
Dr. Sullivan: A larger number than we ever expected.  It is very gratifying to find important problems like Aurora's that are asymptomatic (showing no obvious signs). Catching things early saves lives and helps people be on top of their game. And this is what our type of care and treatment is all about as well.  

Pat: Do plastic surgeons have latitude in this regard? Is it dictated just by personal ethics, or regulated in any way?
Dr. Sullivan: Unfortunately there is very little regulation out there. We now have oral surgeons, ear nose and throat doctors, eye doctors, and ob/gyn docs performing cosmetic surgeries, sometimes calling themselves plastic surgeons, and getting away with it. This state (Rhode Island) does not control this and protect patients and consumers as they should. For example, these oral surgeons send out mailers to unsuspecting people inviting them in for free consults. Aggressive marketing and low prices frequently fool people into having treatments that turn out horribly. The patients end up in my office with post-operative problems that can't be fixed. They tell me they want to sue the doctor because of their bad result but that can't change the problems they have. I could show you pictures of scary results that can't be fixed and could have been prevented. So…do you think these doctors who are doing unsafe surgery are going to do what we feel is appropriate in the pre-operative analysis?

Pat: What kind of anecdotes can you share about this?
Dr. Sullivan: Though we have many life threatening examples, we had one of these doctor's patients end up in the emergency room bleeding and needing blood transfusions and emergency surgery. She nearly died. The doctor did not have privileges to do the surgery in a hospital (he did it in a surgery center that was not adequately monitored by our state) and could not take care of his patient's complications. And when she tried to reach him when she was having her bleeding problems he was out of state and had no coverage in-state. She had no one to help her so I agreed to come to the emergency room that night and care for her. Interestingly she had consulted with me first for her problems but chose to have her surgery done by the person who was not a plastic surgeon. He does have a beautiful office and told her what she wanted to hear rather than give her the type of surgery she really needed.

Pat: How does this make you feel?
Dr. Sullivan: It makes me feel sick.

Pat: What is your philosophy about treating "the whole person"?
Dr. Sullivan: It's not just my philosophy, it is our team's philosophy.  Our entire team is devoted to treating the whole person. People don't suddenly become like that. When I choose people to join our team I want them to be the type of people who always put the patient and the patient's well-being first.

Pat: Do you also screen for emotional stability prior to booking a procedure?
Dr. Sullivan: We try to get to know our patients well. They meet with a number of people on our team before we do the surgery. We put our heads together and the team can usually tell if a person has appropriate motivation for cosmetic surgery or non-surgical cosmetic treatments.

Pat: How often do you turn clients away?
Dr. Sullivan: We turn patients away frequently, each time we feel that plastic surgery or cosmetic surgery treatments are not in their best interest. We wish there were more ways to educate people about the high price they can pay for seemingly cheaper surgery.

Your Turn Now

Angelina Jolie is a champ for going public with her choice to have a preventative double mastectomy, because it’s sparked important conversation that might save lives. She’s done her job. Now here’s yours: next time you’re in the “grooming circle”, getting your hair or nails done, swapping stories and reading slick magazines with pretty bodies on the cover, consider passing along Aurora’s story, too. As for Aurora, she’s seeing things pretty clearly now. Turns out, her eyes are just fine.