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".