10 Ways to Achieve a Medical Miracle

Jess & me

Sometimes a medical nightmare teaches us something about our own power.

This summer, our daughter Jess recovered from a paralyzing nerve disorder within 3 months, less than half the minimum time her doctors insisted it would take. We (she and our family) resolved in the earliest days we would be active participants in the care process.

Here, Jess writes (originally on her blog) hoping her words reach people looking for miracles.

HOW TO ACHIEVE MIRACULOUS RESULTS

IMAGINE that you go to sleep tonight perfectly healthy, and a few days from now you wake up too weak to walk. The doctor explains that the problem is your immune system – it got confused and is attacking the myelin sheath that coats your nerves. She says that the paralysis is going to get worse before it gets better, and that it’s going to take you 6 months to a year to recover.

This is what my neurologist said at the start of the summer when she diagnosed me with a rare
auto-immune disorder called Guillain-Barre syndrome (GBS). When I refused to believe it would take 6 months to recover, she insisted I should keep my expectations “realistic.”

3 months later, I’m going for daily 4-mile hikes and occasionally spicing it up with a 20-mile bike ride to the ocean and back.

When a local TV news reporter asked if my recovery was a “miracle”, a few things went through my head. First was: This reporter clearly just wants an uplifting soundbite to stick onto the end of a predominantly fear-mongering story. Second was: really, local news? I don’t know why I expected more from you. 


I tried to skirt her terrible question and offer something real, but in the end she lopped it all off except the skirt itself, which was: “miracles exist but you have to believe in them.” In doing so, she fumbled an opportunity to educate others about what they can actually do to improve their outcomes.

So, as much for my own closure as to add something empowering to the ocean of lament that exists on the Internet, here is a list of  10 practices that played a key role in my “miraculous” recovery. While they are written from a medical perspective, they can be applied to a broad range of situations with a little imagination.

To be fair, I had a few “positive prognostic factors” going for me as an otherwise healthy young athlete who received the correct diagnosis inside the critical window. My mother is also one of the most passionate patient-engagement professionals out there, so I knew I had a critical role to play. Combined with a strong dreamer mentality, I was uniquely positioned to have an amazing outcome – and you can be, too.
Here we go:

10 PRACTICES TO HELP YOU ACHIEVE MIRACULOUS RESULTS

1. Ask relentless questions.  Rather than sit back as a passive recipient of care, lean into the discussion and invite others to help you understand.  Question the condition, treatment, medications, procedures, painkillers, interactions, and alternatives. When you don’t understand something, say so. If you do this from a place of genuine curiosity and investment, your care team will respond by stepping up their game: doing extra research, giving you more information, and seeking your input when it’s time to make a decision.

Just imagine being a doctor for a second – you’re talking to two different patients about their respective conditions: one who regards you blankly and says, “whatever you say, doc” and another who looks you directly in the eye and asks you a series of intelligent questions that you don’t really have the answers to. Which patient makes you want to bring your A-game?
When you are hungry for understanding, you inspire the same hunger in others.

2. Embrace uncertainty. Despite all your questions, you may receive zero satisfying answers. Especially with something as rare as GBS, the fact is that no one really knows anything with certainty. So rather than freak yourself out about not having the answers you want, choose to see the enormous question mark as an opportunity to create your own outcome. If they don’t know, why couldn’t it be this?

3. Set an intention and announce it to everyone. I told anyone who would listen that my intention was to recover faster than they said I would, even though some people (like my neurologist) probably thought I was setting myself up for failure and disillusionment. The secret is to also tell yourself these things, every morning when you wake up and throughout the day whenever you feel sleepy : “I am rapidly regenerating my myelin sheath. I am building strength in my hips, glutes, quads and ankles. I am recovering faster than anyone expected.” The goal is to surpass your conscious (critical) brain and get your subconscious brain to start scanning your environment for different types of evidence.

4. Conjure your Golden Cocoon. The Golden Cocoon is a meditation concept that my father introduced me to while I was in the hospital. He regularly instructed me to close my eyes to the antiseptic environment and the pain and envision myself bathed in golden, healing energy. When you envision your resting state this way, it becomes much easier to recognize when certain people or activities are in fact draining that energy. (As the critical nature of my situation lessened, this turned into a joke of sorts, as in: “you’re intruding on my Golden Cocoon.”)

5. Invest in a Nutri-bullet. (Or something just like it.) This single invention (and the fruits and veggies it turns into fiber-rich smoothies) is the reason I didn’t have to take the four different laxatives prescribed to manage the unfortunate side effects of opiate pain meds. Even if you’re healthy and regular, this is one of the best things you can do for your nutrition and energy level. If you have a juicer, ditch it – without the fiber, all you’re getting is a sugar rush.

6. Ask for help! This is not something that comes easily for most, but it helps when you have no choice (thanks, Universe). I was super lucky to have the family that I have, and they all deserve gold stars. But they didn’t do it alone either – they asked for help too, and this made an enormous difference. Just one example: We asked the neurologist about nutrition – she had no idea, and she didn’t seem to think it was all that worth investigating. And if my mom hadn’t reached out to everyone in her network, we never would have learned that myelin is made of “the good kind of fat” and we never would have loaded my diet with avocados, nuts, olive oil, and steak. We also wouldn’t have thought to supplement my medical regimen with Anatabloc (a minty anti-inflammatory derived from the tobacco plant) and liquid vitamin B-12.

7. Commit to being present. This is arguably the most important decision you can make, and you might say it’s the hardest one – because we live in a world of infinite opportunity, it is super easy to be consumed by FOMO (fear of missing out) on all the things you can’t do. Instead, decide that you are here for a reason and you might as well really be here so you can learn whatever it is you’re supposed to learn from it all. Plus, there’s plenty of time now to read all those books (knit all those sweaters/write all that code/watch all those movies) you never have time to read (knit/write/watch), and when you’re better (which you will be) you’ll be wishing you’d taken advantage.

But more importantly, when you are fully present, you notice all the little details that constitute healing and magic. You will notice when your left arm’s range of motion goes from this much to THIS much, and you’ll be able to thread all those small details into a larger feeling of progress. By staying present, my progress snowballed so quickly that by the time I held my hiking poles in my hands for the first time on the 4th of July and realized how close normalcy really was, it was almost more disorienting to let go of my new reality (“unable to walk”) than it had been to accept that I was paralyzed in the first place.

Take a second to think about that: I had accepted my situation so fully that I almost didn’t want to let it go.  That’s commitment, which is something we’re all secretly terrified of. But let me tell you – it can be wildly liberating.

8. Don’t commit to the wrong person. My first physical therapist was assigned to me through the Visiting Nurses Association, and I wouldn’t call her awful, exactly. Something was just off - she didn’t make me feel safe (physically or emotionally) and I never felt excited that it was time for physical therapy. In fact, by the third session I had come to dread it, and even though I knew nothing about what physical therapy should be, I knew that dread was not an emotion that had any place in my recovery. So (even though it was inconvenient and rude) we gently gave her the boot.

Then we did another round of asking, which led us to Josh. By himself, Josh could be credited with up to 40 percent of the miracle. Josh just got it – he made me feel safe, supported, hopeful, strong, and authentic. And what’s more, he made me laugh! He never gave me any lists of repetitive exercises to do while he was gone, and every time he arrived he would ask questions about how I was doing and how I felt about what we did last time. He was constantly looking for ways to push me, and he was always celebrating my tiny victories. In fact, nearly every time I saw him (3x a week for 6 weeks), he was saying “wow!” in some way or another, and you could tell he really meant it.
Don’t ignore your gut. It’s all too easy to allow your momentum to continue carrying you forward with the wrong person. If you do, you will be stuck doing band exercises (or the equivalent) for an eternity.

9. Do a cost-benefit analysis. Four weeks into recovery, I noticed that I started feeling disconnected and strange. Googling my medications revealed that one of them is a seizure medication used off-label to treat nerve pain (which only works in 1/3 of patients) that has been associated with increased depressive or suicidal thoughts. I asked my neurologist if we could cut back on it (she had me on 1800 mg a day!) and she said we would have to double the other one. I asked if there was anything else we could try, and she said no. Then she reminded me (forebodingly) that the nerve pain (manifesting as a burning sensation in my hands and feet) was the type that, “once it gets ahead of you it can be very difficult to catch up.” So that night I took twice the amitriptyline, only to wake up the next morning feeling awful and incapable of having any thoughts.

I decided then that I would rather experience moderate physical pain in the mornings and evenings (which, by the way, signals that your nerves are regenerating) than feel like a mindless robot all day. With my primary care doctor’s approval, I cut both doses in half, without any notable change in pain level. A few weeks later, with my parents shrugging their uncertain approval, I stopped taking my meds all together (even though I had a lot left) on the grounds that “it felt like it would be ok.”
And it was! Nobody knows your body and your mind better than you do. These days, doctors see a hint of pain and want to get rid of it right away by flooding your body with artificial chemicals that may or may not have the intended effects. Don’t just mindlessly accept whatever they recommend – it’s up to you to decide if the tradeoff is worth it.

10. Love (your) life and (your) people. This experience can be a profoundly humbling reminder of how much there is to be grateful for and how much community matters, if you choose to see it that way. I spent a lot of time reflecting on how fortunate I am to have such an incredible circle of family and friends. Many of them made time in their schedules to drive or fly out to Rhode Island just to spend hours sitting on the patio with me. I also had a few inspiring interactions with strangers and near-strangers who reminded me that “community” can be a lot bigger than we think.

The best thing you can do for your health and your life is to dwell in a place of positivity and gratitude. Your body is a factory, and your emotions produce chemicals in your body that either promote or inhibit healing. FACT: Love heals. It’s science. So try to produce as much of that as possible – as much for yourself as for everyone else.

So that’s it. My sincerest thanks to everyone who offered their support this summer – I simply couldn’t have done it without you. I’m lucky to be closing this chapter now, but if you or someone you love wants more information, know that I’m part of your community and I’m always happy to help.

"I Can't Die Here. It's Too Ugly."

Award-winning architect Michael Graves

To designer and architect Michael Graves, paralyzed from a rare virus and in a wheelchair since 2003, the ultimate indignity came one day while he was a patient in a top-ranked hospital: “I was in a Hoyer Lift.” (a body sling mounted to a metal structure, used to help lift and move a patient). “The nurse was moving me from the bed to the chair, when another nurse came to the door and called to her friend, ‘Come on, it’s time for our break.’ After initially saying that she had to finish moving me first, my nurse changed her mind…and went on break with her colleague. So she left me dangling in the sling, midway between the bed and chair.”

For a moment hearing this, words escaped me. “What did you do?” I finally asked, horrified.

“My room was close enough to the nurses’ station that I was able to call out and eventually get somebody to come and help me.”

Yikes. I can’t imagine the indignity to any human being…let alone the stark contrast in respect this represented for an internationally-renowned captain of industry. But for Graves, it was only one of many moments that would fuel the next chapter he’d embark on as a designer.

During long weeks in eight rehabs and hospitals following his sudden paralysis, Graves was appalled to find patient rooms too tiny to accommodate his wheelchair; faucets and plugs out of reach; and décor (a euphemism) that prompted him to blurt “I can’t die here; it’s too ugly.” (Though the lobbies and public spaces of these nationally ranked facilities, he says, were gorgeously outfitted in granite and marble).

I interviewed Graves some months ago, for my book on how we need more simplicity and common sense in the way health care is delivered to patients. It makes me nuts that in many ways, the system we have is too often just the opposite – a gnarly, fractured behemoth, its growth fueled and shaped by the whims and widgets of hospitals and insurers, not the human needs of the vulnerable patient around whom the entire enterprise revolves. (Hey, hard to blame these institutions; they’re just playing by the rules they’re given). With reforms working their way through the system, things are slowly getting better. Slowly. (Did I mention “slowly”?)

Who better to help us figure out the intersection of health care and design—design meaning common sense, frictionless user interface, form following function-- than Michael Graves? With oodles of design awards, honorary degrees, a bunch of medals, plus libraries, resorts and company headquarters to his credit, (think the Swan and Dolphin Hotels at DisneyWorld, and scores of everyday products at Target Stores), he’s arguably the dean emeritus of how design can empower—or dis-empower—a patient. How exciting to tap the wealth of wisdom that rides around in that lovely mind.

When I finally met Graves and his team at their Princeton, NJ headquarters this summer,

Me with the amazing Michael Graves!

I was struck by the architect’s genial spirit, his warmth and kindness, and the absence of any caustic edge one might (undersandably) expect from his experiences. Hard to miss: the genuine affection he and his team feel for each other. (Several have been with him 30+ years).

I toured the building, saw mock-ups of buildings and complexes the Graves team was working on (the practice continues to churn out world-class projects), and finally met graphic designer Dounia Loupier (who, with Graves, designed the cover of my book). The team showed me some of the cool “life assistance tools” the firm has launched: a hospital bed table with a detachable bin for personal possessions, with drawer accessible from any angle; a redesigned wheelchair that’s safer for transport workers, more comfortable for patients and more cost-effective for hospitals. (Below is some video of Ben Wintner describing the Graves-redesigned hospital chair). These are all things you might want “when your day comes”.

 Getting back to his humiliating Hoyer Lift story, where he was left dangling in mid-air: Graves tells it for one reason: to illustrate how important it is for a hospital to have a culture of care—and how egregious harm to body and spirit can occur when it’s absent. “These workers aren’t bad people. I don’t blame them. They may have been trained medically, but they haven’t been trained in any culture of care.” Graves points to how other companies work from the top down to create this unified approach. “Apple, for instance, has its VP of sales interview and train managers, who in turn train secondary managers, who in turn interview and train every single worker and helper, so the interaction with the customer is consistently up to the same high standard. That’s what it takes.” Absent this level of attention, Graves says, Apple might lose a customer’s business. In a hospital, the loss can be much worse.

Graves’ better designs for hospital furniture, shower chairs, and canes that zip into satchels offer a glimpse into a future where every person’s dignity and control is honored as a birthright, regardless of physical limitation. However, Graves’ crusade to put such tools in others’ hands is tempered by realism. While Stryker has partnered with his firm to bring many of these products to market, for the most part you’ll have to go through a distributor and order them online. Like crutches, walkers, and other mobility tools, if you can find them at retail stores at all, it will most likely be in a separate durable medical equipment (DME) store. (A notable exception is pharmacy chain CVS, which operates twenty-eight CVS “Home Health” locations around the country.)

The obvious question: what about Target stores, where Graves-designed products became iconic of “good design accessible to all”? After fifteen years designing for Target, Graves’ relationship with the giant retailer came to an end in early 2012. “I tried like crazy to get them to sell the new mobility designs,” he told me. “They said they’d do it when Walmart does it. And Walmart’s not gonna do it until customers ask for it.”

Graves hopes for help from a group of customers “that’s the right demographic and the right age: ‘sandwich moms’.” These are moms assisting aging parents while raising their own families. According to Consumerist.com research conducted in 2009, “There’s a huge unmet need for products and services that help care for aging parents now and in the future.”

Another new dynamic entering the landscape: soldiers returning from combat in Iraq and Afghanistan. With advances in treating grievous injuries, many more troops are coming home alive—and facing new challenges. “Some twenty thousand of these kids are paralyzed from the waist or chest down,” says Graves. “They’re not only trying to rebuild their lives, but a lot of them can’t find jobs. Many of them are re-upping in the service.” Graves’ firm was commissioned to help design model homes to accommodate these vets; the Wounded Warrior Homes, at the Army’s Fort Belvoir in Virginia, served as prototypes for nineteen similar homes now under construction. The intention is to create “living laboratories” where occupants can test and give feedback on new features. “You walk into the home and have no idea it’s specifically designed for mobility issues. Everything is integrated and elegant,” says Graves.

Is it possible these wounded warriors might extend their heroism beyond the theater of battle by inspiring a more mainstream awareness of the need for universal design? “All of us will need some adaptations in our lifetime,” says Graves. “Our hope is this work for wounded warriors will spark further movement within the Department of Defense, and that the trend will carry over to elderly housing, and housing for all of us.”

It seems to come down to consciousness—something Graves promotes by having new hires at his firm spend time in a wheelchair. As for the world at large, Graves’ story about how he was left dangling in midair in a Hoyer lift, as wrong as it was on every level, is also indicative of the far more insidious harm that occurs when we devalue a person’s basic human dignity—or shrug when it happens. Bring up the subject of indignities suffered by patients, and see what stories come up—like a grown woman sobbing for a tissue at 3 a.m. because the bed table with the tissue box has been moved out of reach (and no one’s answering the call button), or a grandmother, asking to be taken to the bathroom, being told, “It’s shift change. If you can’t wait, you’re going to have to go in the bed.” These humiliations, both large and small, degrade not just the person experiencing them; they diminish all of us.

--Excerpted from Pat Mastors’ book, Design To Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives, with a Foreword by Michael Graves.  

Watch Ben Wintner of Michael Graves Design Group Demonstrating a redesigned patient-friendly chair.

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.