Pat Mastors

I love to know who's reading Design to Survive, what you got from the book, and what you'd like to see next. Let's make this a place to talk about how to make health care better. Join the conversation!

Fun facts about Design to Survive:

* Original title: "If IKEA Designed Health Care: 9 Ways to Put Patients First". Lots of people thought the "IKEA design" of health care in the title sounded intriguing. Others thought the book was put out by IKEA. We sure didn't want the book derailed by a poorly conceived title. So we focused on one question: what is the heart of the message? It's that people are DESIGNED TO SURVIVE (think about how a cut heals, or the metabolism of a child who falls through the ice kicks in to save him). The problem is that so many of the products, processes and procedures in health care are designed to serve the providers and insurers, not the patients. We need to focus more on building a patient-centered landscape where the PATIENT is encouraged to find balance, healing, and success.

* Original cover design: it featured an IKEA man in a patient's gown and an IKEA man in a doctor's lab coat (I don't think IKEA draws women very much, but it's hard to tell with cartoons) are pushing a cart with flat-pack boxes stacked on it. The words that made up the title were on the sides of the boxes. The patient and doctor were smiling! They were working together! I thought the whole thing was quite a clever allegory for partnership in health care. Michael Graves, the renowned designer who wrote the book's Foreword, pretty much hated it. Who was I to argue? I asked him for suggestions...and voila, he worked with colleagues to create the very cool design you see now.

* How IKEA reacted when I reached out to tell them I was writing this book (and did they have anything to add?) They said "what an incredibly interesting and clever idea! We want 10,000 copies!" Just kidding. PR director Mona Liss emailed me: "Hi Pat, 
thanks for letting us know and regarding IKEA as a good example." Yup, that's pretty much it. I guess IKEA has other things to think about.

* How I felt the day I held the first published copy in my hand: elated, but terribly worried. Next to having my three children, producing a book and sending it out into the world is a lot like having a baby (as any author who's also given birth can tell you). You nurture it, feed it, groom it to be the best it can be, and let it go. Why was I worried? Because though my book was finally here, my daughter was in big trouble. The culmination of two years of research, conferences, interviews, rewrites and investment that had seemed so critical, now paled in importance. Why is that, you ask?

Just days before (May 18, 2013), our daughter Jess had been admitted to the hospital, having been diagnosed with a rare and paralyzing nerve disorder called Guillain-Barre Syndrome (GBS). Each day she lost more of the ability to use her arms and legs. One third of people diagnosed with GBS (where the body attacks the coatings of the nerves) end up on a ventilator in intensive care, completely paralyzed. Jess is 26 years old. Just last year she hiked the entire 2,200-mile Appalachian Trail! It was beyond terrifying to see her lose the ability to walk, to watch her eyes well up seeing her face become paralyzed, to see her struggle to swallow a pill. All within the span of five days! We clung to the light at the end of the tunnel: that although recovery is slow and tedious, 80 percent of GBS victims are back to normal within six months to a year. So there's a long road ahead, but I know we will get there.

In the middle of all this I looked at that book in my hand-- and could only thank the universe for everything that had led me to write it, and for what I learned writing it. To be ready when Jess needed me. When the tingling and numbness in her hands and feet and the pain in her back kept getting worse, I called an ally (an MD) and brilliant diagnostician I'd met in my patient advocacy. He helped manage her lab tests and fairly quickly gave us a correct diagnosis (GBS is often misdiagnosed). That meant we were able to get Jess in treatment by the end of the day (time is of the essence in slowing down progression of symptoms.) When Guillain-Barre was diagnosed, I knew which websites to consult for information. When a barrage of treatments, medications, medical terms and staff came at us, I knew how to ask questions, what needed to be written down, how to navigate shift changes in the hospital, how to interact with the nurses and doctors to everyone's advantage (an art in itself, I've earned), when to ask for alternatives to medications and treatments that were not sitting well with my daughter, and to never leave her side. On Facebook groups and through my patent advocate network, lots of loving thoughts, advice and support came our way. Though in my heart I was a terrified mother like any other, at least I was also able to be there for Jess. So was my family. Through what they've learned listening to me and putting up with me writing the book, Jim (my husband) and Jess were also amazingly strong and involved members of the care team. (Sick as she was, Jess rocked it!)

Today, as Jess continues an encouraging pace of recovery, I truly feel that everything I had done and learned in my life might have led us to be as ready as anyone can ever be for this event. I'll never know exactly what kind of difference our involvement made...but the fact is the average hospital stay for someone with GBS who gets treatment within five days of the onset of symptoms is 23 days. Jess was discharged and home with us in 7 days. She has a wonderful spirit about her and I have no doubt she'll be back climbing mountains again.

When my father was in the hospital in 2005-06, it was a very dark time for our family. But I could never know the path this would send me on, what the universe was preparing me for years down the road. The knowledge and experience I gained ended up being a priceless gift. So for any of you struggling with a challenge, when times seem really dark, please know that there may be a reason you don't yet understand; a purpose that will make that bad experience become an essential one in your ultimate path.

* How did writing this book change me? I have a new level of empathy for my friends and colleagues who shared their stories in Design To Survive. I'm blessed in that I got to bring my daughter home from the hospital. Many of them did not. I have to believe all our collective work to inform and help you--so that you can be there for your family--will make a difference in the end.

* Where did the idea for Design to Survive come from? I love analogies. Tell me an experience or draw me a picture I can relate to, and the light bulb goes off. Isn't that how we all learn? That's why I used the "IKEA" analogy in Design to Survive. People just don't "get" health care, its perverse incentives, fractured systems, payment widgets (am I losing you yet?) But they GET furniture. They understand comparison shopping, competitive pricing, working with companies that respect them, and even kicking in some elbow grease to save money and create something to be proud of.

* What do I do when I'm not thinking about medical and health care stuff? I love to read, write (my blog is IslandsofExcellence.blogspot.com), cook, garden and travel. I've been married to a fantastic guy for thirty years (!) and we have three wonderful kids. I should spend more time getting my life, office, emails, closet and files organized, but it's not my fault; something more interesting always beckons. Our house is run by two inexcusably spoiled and, shall we say, rotund cats named Sadie and Jack. The human members of the family are clamoring for us to get another dog. Don't tell anyone...but I'm weakening.