For my Daughter, the Patient: a "Golden Cocoon"

Hospital transport arrives to take my daughter just after 9 AM. We’d been told her ultrasound and X-ray were scheduled for 10 AM, an hour away. Jess and I exchange a look. She’s just about to take another swig of the laxative drink she’s been drinking since 8:30. “I’ll go with you,” I say. “We’ll make sure there’s a bathroom nearby.”

Strike one for the Golden Cocoon.

We get to the ultrasound department, and are left alone in a holding room. We’re told the nearest bathroom is down the hall and to the right. Jess can’t walk. I stop a man in a white lab coat, explain the situation. He makes sure we’re ushered into a procedure room that has a bathroom.

Score one point for the Golden Cocoon.

Jess the day after she was admitted to the hospital

Five days prior, Jess had been diagnosed with Guillain-Barre Syndrome, an auto-immune disease where the body attacks the coating that protects the nerves. In the space of five days she’s lost the ability to walk unassisted. She’s wracked with back pain that can only be managed by intravenous morphine. Overnight, her face became partly paralyzed. We’re told her condition might worsen…the paralysis might move from her arms and legs to her chest. If it reaches her diaphragm, she won’t be able to breathe. If that happens, she’ll be whisked off to intensive care. A breathing tube will have to be inserted, to keep her alive until the symptoms begin to reverse. In any case, even if the worst never comes to pass, recovery will take six months to a year.

There is no cure. There is a treatment, an infusion dripped into her arm that carries a substance extracted from the blood of 20,000 donors. As we pray for this treatment to curb her paralysis, other problems rear their heads. Strong painkillers have seized up and stopped Jess’ digestive system. She can’t keep food down. There may be problems with her liver and kidneys, too, which is why she’s having this day’s diagnostic tests.

As the technician completes the ultrasound, the man in the white lab coat hovers over the screen. “Liver looks good”, he says. Great news, but Jess’ face is pinched. She is deep breathing now, in pain. Her morphine shot is due. “How long to get her to her X-ray?” I ask. “Depends how long it takes for transport to get here,” says the technician, wiping gel off Jess’ belly, not meeting my eyes.

Strike two points for the Golden Cocoon.

***

Our daughter Jess

Since she was admitted, my husband Jim and I have stuck to our daughter’s side like burrs on a Collie. I refuse to leave the hospital at night; he returns every morning. He sees Jess struggling to breathe through the pain, and hovers over his little girl, his tone soothing. “Take deep, calming, breaths. Belly to your spine, now let it out. You’re in a golden cocoon,” It’s an image from meditation practice, an activity that they share, where you imagine yourself bathed in a golden, healing light. You breathe it in, and breathe it out. Try not to let distractions, negativity and pain reach you. To preserve her Golden Cocoon, Jim brings rose oil and dabs it under her nose. We greet everyone who enters her room like they are guests in her life, guarding Jess’ sleep and peace as best we can. I massage Jess’ numb legs and feet with lotion… legs that just months before had taken her on a 2,200-mile walk traversing the entire Appalachian Trail. Rubbing her legs, I smile up at my beautiful daughter. I can’t let her see the sadness and fear that well up inside me.

But we have our work cut out for us. As an endless cast of doctors, nurses, specialists, phlebotemists and therapists rotate in and out of Jess’ room, each needing to extract something (blood, information, a vital sign) from her tortured body, some are truly wonderful. But some have no concept of the Golden Cocoon, or they wouldn’t grab her wrist to scan her bracelet without a word, or leave the door open to a noisy hallway when they leave, or send her off for an hour of tests after starting her on a laxative.

***

Back in the ultrasound bay, I ask “is there any way we could hurry with transport to X-ray? Jess is in pain, and due for her morphine.” The man in the white coat looks up, turns to the technician. “Why don’t we just bring her there?”

I smile my thanks, squeeze Jess’ hand. Score two for the Golden Cocoon.

The Chief of Radiology transporting Jess to X-ray

I call Jim on my cell phone. “We’re heading to X-ray now. Can you talk to the nurse and make sure Jess’ morphine dose is ready just as soon as we get back?” We set off with Jess’ gurney, white coat man in the lead, ultrasound technician pulling up the rear. “That’s the Chief of Radiology!” the technician stage-whispers to me, referring to white coat man. “This is the first time I’ve ever seen the Chief of Radiology transport a patient!”

Score three points for the Golden Cocoon!

Jess is whisked immediately into X-ray. They are actually waiting for her. Someone has called ahead.

Score three points.

As her gurney is wheeled inside, Jim comes down the hall with Jess’ day nurse, Patricia. On her face is a big smile. In her hand is a hypodermic needle-- Jess’ dose of morphine. Jess sees them arrive, takes it all in. Her frown smoothes out, she exhales deeply. Her eyes close slowly. Tears leak out.

Score five for the Golden Cocoon!

Words can never express the gratitude of a terrified parent when such kindness is shown...when we feel seen, and that we matter. (I wrote about this in an earlier post about the Ken Schwartz Center for Compassionate Care). Think about it: as hospital patients, a parade of people you do not know have license to pierce and cut your skin, waken you out of your sleep, expose your body, move your things out of your reach, or refer to you as “the knee replacement in 305”. The dehumanization of patients is not conscious; it’s a consequence of the staff heeding rhythms, schedules and constraints they are told to serve. But when we let the little “dents” to the patient’s cocoon go unchecked, when no one points out how hurtful these seemingly small wounds are to our spirit and sense of self, it gives tacit permission for bigger ones.

Jess, her first day home, kitties at her feet

The secret ingredient is consciousness. We protect fragile things before we put them in the mail, insulating them from harm with layers of bubble wrap and sturdy cardboard.

Surely the hospital patient deserves no less.

Thankfully, our daughter Jess is recovering remarkably well. We're incredibly grateful to her wonderful medical team, and to more people than we can mention in this post, but that time will come. One thing is new: frequently, if we’re having any kind of vocal disagreement in her presence, Jess will warn us with a wink, “You’re hurting my Golden Cocoon!”

e-Patient Dave: "Humor and Bluntness"

e-Patient Dave

 Six years ago Dave deBronkart (better known as "e-Patient Dave") was battling stage 4 kidney cancer. On top of that, financial setbacks (owning two houses during a job switch and ending up with no job) might have ground a lesser man into the dust.

Fast forward to 2013: The cancer's a goner (thanks to modern medicine and Dave’s active engagement every step of the way). And Dave is gainfully self-employed in a field he pretty much carved out for himself. Tapping marketing and technical savvy from his pre-cancer life, an ability to make complex subjects understandable to lay readers, an energy level that could shame a two-year old, and a mega-dose of stage presence, Dave’s keynote speeches on patient engagement are in demand worldwide. His 2011 TED Talk that concluded with a chant of “Let Patients Help” has had nearly half a million views, and has been subtitled in 26 languages. Let Patients Help is also the title of Dave’s new book, published this past March. 

Pat Mastors: How’s the book being received?

Dave deBronkart: Superbly. It’s a short book (100 pages), so people are actually reading it!

It’s already been translated into Spanish, Dutch and Hungarian. German and Greek are underway. This is with no funding, no conventional publisher and no marketing budget. Next with the book: Finding out what happens when people implement what the book says. Maybe building ‘xx’ around it, like making implementation be part of my speaking fee. We’re looking at it.

Pat Mastors: Your schedule is jammed. Aside from the book’s success, what are some highlights of the year?

Dave deBronkart: To be invited to write an essay for the British Medical Journal is as good as it gets...trying to change the culture of medicine to give patients and providers a different sense of what the culture can be. Also essentially creating a market for my own services and making it work. Last year I finally became able to make a living doing what I do. I have a small office near my home in Nashua (New Hampshire) and have been able to hang up a shingle, and hire an assistant, and surround myself with white boards that help me brainstorm and keep track of things.

As for events…I’d have to look back at my schedule…Aetna, The SAS Institute, six state hospital associations this year. August will be the National Council of State Boards of Nursing. That's all within the industry, because they hold conferences. The challenge is reaching the patient community. So I write. This year I started blogging on Forbes.com. So that helps.

Pat Mastors: Leah Binder (President & CEO of The Leapfrog Group, a business-led healthcare quality improvement organization), says in a review of your book, “Dave deBronkart has been in that [patient’s] johnny and survived, and I don't think he ever once in his life just did what he was told without comment. He does so with a combination of humor and bluntness, which is why he is so widely respected not only by patient advocates, but by the health care industry". Why do you think you’ve been so successful on the speaking circuit?

Dave deBronkart: Leah said that? (chuckles). I’m aware of different segments and

priorities. It’s not about me. It’s about “what is the audience thinking? What will be relevant to their lives?" Ted Eytan, a great physician friend at the Permanente Foundation, starts some talks by saying, “It’s fine with me if you do email while I talk, because it’s my job to be more interesting than your email.” I think that’s perfect. I work my butt off to understand each individual audience and think about why and how my story can change their lives.

There’s nothing harder in marketing or speaking engagements than persuading people to adopt a solution to a problem they don’t have, and “mainstream America” isn’t in a health crisis – yet. My mission is to help society “prepare the house” for when that knock on the door comes, late one night. I want citizens to know it’s legitimate to augment their physicians’ advice online. I want everyone else – insurance companies, clinicians, policy people – to know it too, so they can help patients help themselves.

Pat Mastors: What’s a typical day in the life of e-Patient Dave?

Dave deBronkart: My style is multi-channel real time all-at-once, but with no sense of direction. I’m like a fire hose. Grab it and direct it, and beautiful things happen. It’s effective and does the job. If not grabbed correctly, it’s like a water snake—all over the place. Now I have an assistant, Kristen, who calls me at 7:30 am, and puts stake in the ground for my schedule that day. More and more, structure is making my day more focused and productive, and technical tools help. Everything is in the Cloud. To keep track of the business side of 200 events in the last 2 years, I use the Zoho CRM sales management system. Kristen also goes through all pending projects. The free Asana Cloud management system came out last year, so that keeps track of tasks. I do email after 7:30, then Zoho and Asana, and I use an app called Expensify. I take a photo with the receipt, and I can toss the paper. All these tools exemplify efficient systems that are free.

Pat Mastors: What are your tips for using social media?

Dave deBronkart: Number one, listen. You can just blather, but it won’t get you anywhere. Happily, to know what's intersting to people, you can just go on Twitter and see what they're saying, what they are talking about. Follow a hashtag and join the conversation by adding something to it that’s relevant…it's the same as being interesting in conversation in real life.

Second, when you speak, say something useful to the audience. Earn an audience. When you find an article others might find useful, tweet it. Others will re-tweet. Don't obsess about numbers.The most re-tweets I’ve ever gotten is 10. I’m almost up to 15 thousand followers on Twitter. 
In the early days I would crawl around from profile to profile, to see who’s following who. When I'd find someone interesting with lots of followers, I might respond to something they said. And if they re-treet it, suddenly others are seeing your name. Find people aligned with your interests and Tweet with them. You should also show spartly because ome personality, some opinion. It makes you human. 

The converse of all this is to not listen and not pay attention to how audience is reacting. And that, by definition, makes you not interesting.

Pat Mastors: Aside from getting Let Patients Help to be used more broadly, what’s next for you?

Dave deBronkart: I want to create the next wave of patient speakers. I cost (charge) more than many organizations can afford now. I want this summer to start a "speaker’s" academy of informative blog posts. It would probably start with adding a page to my website. As in, “Here is what you need to know about how I do it”. Partly to help other patient advocates and bring in more voices, and partly because I want industry to hear them. They [the advocates] need to be taught what I learned, though…that it’s not about me. 

Dave manifests that "it's not about me" attitude in other ways. To the extent his schedule allows, he's a focused and effective cheerleader for the work of fellow patient advocates and health  innovators.  He's drummed up crowd funding support for our projects on Medstartr and Healthtech Hatch, including a recently funded film about Regina Holliday's Walking Gallery of Healthcare.  He's also been a great mentor and friend to me personally, sharing invaluable insights in my newly published book: Design To Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives. 

Days after the above interview (conducted via a phone call squeezed into Dave's drive time), he launched the aforementioned "Speaker's Academy" with a post from Randi Oster. You can bet he'll build a great community there, setting us newbies straight, when necessary, with "humor and bluntness".

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.