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.

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

Aurora

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.

What Do Patients Really Want?

Don't get me wrong, it's huge to see patient safety evolving to be a front-burner issue. After beating the drum for years, The National Patient Safety Foundation (whose annual Congress convenes this week) and other groups are seeing progress, with meaningful use, electronic health records, Pay for Performance, and the patient-centered medical home. Medicare Innovation grants and the Partnership for Patients are chipping away at medical harm and 30-day re-admissions. Empowered patients are test-driving their choices and influence though open notes, shared decision-making, lobbying and partnering. The first strides toward transparency are being taken.

Ken Schwartz

But before we get too focused on metrics or dazzled by our success, here’s another litmus test with which to measure our progress: "What Would Ken Schwartz Think of That?"

Schwartz was a 40-year-old lawyer working in healthcare, married with a young son when he got devastating news: advanced lung cancer. It came from out of the blue: he’d smoked an occasional cigarette in college and law school, but he'd been living a smoke-free, healthy lifestyle since then.

When Schwartz wrote about his care in the Boston Globe, early on in the diagnosis and treatment process, it was about something much more elemental than technology or transparency:

…the nurse was cool and brusque, as if I were just another faceless patient. But once the interview began, and I told her that I had just learned that I probably had advanced lung cancer, she softened, took my hand, and asked how I was doing. We talked about my two-year-old son, Ben, and she mentioned that her nephew was named Ben. By the end of our conversation, she was wiping tears from her eyes and saying that while she normally was not on the surgical floor, she would come see me before the surgery. Sure enough, the following day, while I was waiting to be wheeled into surgery, she came by, held my hand, and, with moist eyes, wished me luck…

This small gesture was powerful; my apprehension gave way to a much-needed moment of calm. Looking back, I realize that in a high-volume setting, the high-pressure atmosphere tends to stifle a caregiver’s inherent compassion and humanity. But the briefest pause in the frenetic pace can bring out the best in a caregiver, and do much for a terrified patient…I cannot emphasize enough how meaningful it was to me when caregivers revealed something about themselves that made a personal connection to my plight. It made me feel much less lonely. The rulebooks, I’m sure, frown on such intimate engagement between caregiver and patient. But maybe it’s time to rewrite them.

Ken Schwartz died of lung cancer in 1995, less than a year after his diagnosis. But his legacy lives on in the foundation he started shortly before his death, the Schwartz Center for Compassionate Healthcare at Massachusetts General Hospital. Dedicated to strengthening the relationships between patients and caregivers, it also stands as a poignant testament to the power of the human touch, and human kindness, in affirming our basic humanity.

The Power of Touch

“The most important innovation in medicine to come in the next 10 years is the power of the human hand,” says physician and author, Abraham Verghese, in his TED Talk, A Doctor’s Touch. During this era of “patient-as-data-point”, Verghese believes in “the old-fashioned physical exam, the bedside chat, the power of informed observation”.

From TED.com:

Before he finished medical school, Abraham Verghese spent a year on the other end of the medical pecking order, as a hospital orderly. Moving unseen through the wards, he saw the patients with new eyes, as human beings rather than collections of illnesses. The experience has informed his work as a doctor -- and as a writer. "Imagining the Patient’s Experience" was the motto of the Center for Medical Humanities & Ethics, which he founded at the University of Texas San Antonio, where he brought a deep-seated empathy. He’s now a professor for the Theory and Practice of Medicine at Stanford, where his old-fashioned weekly rounds have inspired a new initiative, the Stanford 25, teaching 25 fundamental physical exam skills and their diagnostic benefits to interns. He says: “I still find the best way to understand a hospitalized patient is not by staring at the computer screen but by going to see the patient; it's only at the bedside that I can figure out what is important.”  

Here’s the catch-22: sitting at the bedside takes time…time that’s precious, and to be frank, un-billable. In the 18 minutes it would take just to watch Abraham Verghese’s TED talk, a physician could see two patients (and get paid for it). Nurses also are over-worked and time-deprived.

Ken Schwartz would probably nod his head. He was a lawyer, after all. He would get it: tough to make a business case for compassion. But imagine yourself tied to the bed by IV lines, staring at the ceiling tiles and wondering if you’ll live to see another day. 

Respiratory therapist Colleen Murphy Allen posted this online (I’m using it with her permission): 

What makes a difference to the wounded and sick? Yes, good medicine is amazing science and phenomenal minds working hard to cure. However, let us not forget the small things: a warm smile, an ice chip, a warm blanket, a cool washcloth. A pillow flipped to the other side and a boost in bed. Holding a fragile hand while sitting by the bed of the dying in the deep recess of night. Jumping up onto a bed to do CPR…Staying alive, staying alive…Chapstick and a damp mouth swab. A patient comforted, a smile, a deep breath and heartbeat from someone resuscitated. This was a bit of my job over the last few days. We all do this. Every one of us. And this is not even in our job description. 

Maybe the incentives and payment widgets that shape and constrain a clinician’s time—and muddy the imperatives for “high-touch” care-- need some doctoring of their own. Perhaps along with our agendas, laptops and business cards, we can carry this question into every aspect of our patient safety work this year: 

"What Would Ken Think"?

Some of this post is excerpted from Pat Mastors' forthcoming book Design to Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives.

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.

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!