published on amyoes.com
I just finished "The Patient's Playbook" by Leslie Michelson.
Patients need to read The Patient's Playbook because it provides any patient with an empowered approach to patient care.
Family members and friends need to read this book because it provides invaluable tools in how to help their loved one advocate for care, and support them in the most proactive way possible.
Members of society need to read this book because we all need to take a preventative approach towards our health, rather than waiting for something to happen to us.
Doctors need to read this book because it sheds light on what interactions and protocols are the most helpful and life-saving for patients. There is something here for everyone and Leslie D. Michelson does a beautiful job of calling us all to action.
The book does a brilliant job of explaining how to change the way we manage our health and the health of our family. In life, no one will work harder for you than yourself, and Michelson explains beautifully why healthcare is no exception. This book was not only extremely comprehensive, but amazingly simple and easy to read for such informative, detailed information. I was able to learn key new concepts in a very easily digestible format. The book is clearly laid out in easy-to-navigate sections, with bullet takeaways after each chapter, inserts with more resources, FAQs and further details, and a clean, organized formatting with blue and black text to highlight the important key concepts.
As patients, we can often feel like we are in the powerless, passive position. We've learned through our healthcare system that it is out job to be submissive and do what the doctor tells us - no questions asked. Michelson challenges this perception, weaving together personal stories, individual stories of patient experiences, interviews with actual doctors, and step, resources and strategies for receiving the best possible patient care.
As Michelson writes, "the process of trying to feel better can make us feel worse." Often as patients we feel a sense of helplessness and defeat, and cling to a healthcare system as a means of order and stability fix everything. As Michelson writes, "we quickly realize there is no map."
I experienced this first hand, with my own condition. I don't really fit into any category. Surgeons fondly call me a "surgical disaster" or compare my intestines to "a glob of boiled spaghetti." These amazing surgeons ingeniously created a digestive system for me after organ failure and a gastrectomy my senior year of high school. A blood clot had caused both my lungs to collapse and most of my intestines had to be removed after I went sepsis. Now the job was "hooking me back up" - a surgical reconstruction. What I learned after I was readmitted, reconstructed, re-operated on and "fixed up" several times, is that no surgery is a guarantee.
I know what it's like to wake up as a "patient" and suddenly have no clue what's going on. I spent many, many months in the surgery ICU, which is a whole world in itself. It's a whirlpool of trauma, cut off from the regular, free-flowing world I once knew as a teen. Time and space don't exist, let alone school assignments and news headlines. ICU life exists in its own winding and bizarre current, so breeched off from the normal flowing river that is life. No one in the real world could ever perceive the upside down hell that being chained to beeping machines is with 48 other "sickest kids in America" (as the Columbia pediatric ICU was coined, with patients flown in from Texas to California), all wondering when, or if, life will start for us again - or if we'll even keep the life we're given now, because for a while that wasn't for sure either. Four children died while I was awake, and every time, the nurses would perform a ritual, where they closed our curtains, as if we couldn't tell what was going on. Hours later, a new patient would arrive, with a swarm of medical staff unplugging, rewiring, and another family in the same hypnotic trance that my family had just months before.
My dad, had the tremendous responsibility of communicating to his colleagues, as a doctor himself, and trying to understand what measures would have to be taken to keep me alive. I would not be here if it was not for my father, watching every move, catching every little thing that could have gone wrong. I can't imagine what it must be like for any family to feel the shock of something happening like that, or to wait for hours and hours while doctors worked trying to save my life. Dealing with a decade of medical trauma, I had to eventually learn how to speak up myself.
There was no roadmap for my treatment, and so I had to learn how to become my own advocate and ask the right questions. When illness strikes, the road is confusing and we become paralyzed. The Patients Playbook is all about partnering with our doctors rather than blindly trusting them. Michelson is CEO of Private Health Management, and called himself a "health care quarterback". He truly does coach his readers to "get in the game," causing us to completely rethink how we view our relationship with caregivers and hospitals. The first section of his book is all about preparation. Starting with the most important relationship, he explains why finding the right Primary Care Physician will save your life. Each chapter is concluded with a brief, easy to understand wrap-up and summary of key points, with real life examples sprinkled throughout. He explains the three levels of care needed in partnering with your PCP, and how to find the best one for you, or alternatively, strengthening your relationship with the doctor you already have.
I loved how Michelson took the time to interview doctors for their own opinions of what makes a good physician, which is then followed by Michelson's list of five important traits to look for in a primary care physician. This book truly tries to cover all viewpoints in this matter, and even lists sample questions and conversations to have when consulting a doctor. Michelson urges us to think, be skeptical, be informed and be curious in this process - we should be interviewing our doctors just as we would be interviewing someone for a job. He points out key factors that I never would have even thought of, like finding a doctor who understands the important of referrals and coordinating with specialists.
The quick guides at the end of each chapter are invaluable, and is a great takeaway in itself. The book outlines how to collect family histories and medical records in order to be as prepared as possible. Every step is meticulously outlined - not only for us, but for our support system. The chapter explains the value of family and friends' support, what to say to them, and the various ways they can support a patient emotionally, logistically, clinically and intellectually. Every other chapter contains a question you didn't even know you should ask, or comments you didn't even know you could make.
The best part of this book is Part Two: Experts and emergencies. What do we do when crisis strikes? How can we ground ourselves when we immediate get thrown into panic mode and are too overwhelmed to make calm, rational decisions? There are so many great real life examples here, as well as practical, effective ways for a patient to be more courageous. There are helpful strategies for finding the medical experts you need - "Don't just google it" - questions to ask a specialist, quotes from actual specialists, and a resources directory with online sites that are far more credible than google.
My favorite chapter was Emergency Room 101. My brother is a doctor in an emergency room at a New York Hospital, and I have also stayed in my share of emergency rooms. I know what a chaotic, nerve-wracking place it can be. But have no fear! Michelson leaves us quiet well-equipped with an emergency room checklist and game plan, reminding us that even though the ER is overwhelming, we are still in change.
Part Three is what to do when serious illness strikes - something I know all too well, and many of us do. I must stress that for such serious matters, Michelson addresses all of these important insights in a calm, friendly, accessible and welcoming way. Approach it like a pro, he urges us. I especially love his four steps of Intensive Case Management: Immersion, Diagnosis, Treatment and Coordination. I don't think of serious illness as something as simple pas four handy bullet points, but I must say, Michelson makes a compelling argument. Maybe healthcare can be that simple. Maybe not super-simple, but definitely less overwhelming for a patient coming into an unexpected situation, like a serious diagnosis.
"Learn everything you can about your illness and the doctors who are passionate about it." Michelson urges us to immerse ourselves in our illness in a proactive, non-victimized way. He tells us to note the changes in our symptoms, changes in our health, and changes in science. It is our job to learn, be curious and keep educated and up to date. The Patients Playbook also handles the matters of getting a diagnosis in a very informative, sensitive way. When do we need a second opinion? When should we have confidence in our diagnosis? What do we do about it? All of these questions are answered and more.
Michelson concludes with an enthusiastic chapter on competence and courage: "Now that you've got it, lead the way!" Michelson and I share similar ideals: that our job as a patient is not only to feel empowered in our own healthcare, but sharing our stories with others and helping shed light on having courage in our own care, in the hopes that it can inspire patients to step out, speak out, and be their own best advocate.
I know first hand that it takes takes "guts" to talk - and sing - about my medical traumas, my anger, the adversity I faced, and how I lost hope in things ever getting better. But I share to show that things DO get better with patience, trust and resilience.
I share to give courage and a sense of belonging to people who are struggling with all kinds of mental health or physical challenges, but also to help build a campus that gives everyone the kind of awareness and generosity of spirit that makes that world a better place. From my own decade of medical isolation, I learned that nobody can heal in a vacuum. Being able to reach out for help and find support is what helps us realize we're not alone.
Now, my one-woman autobiographical musical, Gutless & Grateful aims to share how we can all build resilience. I'm sharing the story of my life, and then helping everyone create their own resiliency toolbox - a must-have in order to deal with stress and navigate life's detours. Reading The Patient's Playbook gave me the courage, insights and confidence to make health an exciting source of personal empowerment.
Learn more about The Patients Playbook at http://patientsplaybook.com/
Watch Amy's TEDx Talk here.