"This book is a "must have" for anyone touched by a devastating illness directly or through a loved one. Any health professional not deeply moved by the contents should find another line of work."
— Claire Fagin, PhD, RN, Dean Emerita, U of Penn School of Nursing
This is a book about what you must do to take care of yourself while your heart is breaking.
When I think about what it is like getting a devastating diagnosis, I have a picture of these two full grocery carts coming toward each other at top speed. They collide at full force and then in slow motion, all the vegetables the cantaloupe, the eggs, the apples, and the bread go flying into the air. And I'm just watching helpless to prevent the collision, helpless to save the groceries. But eventually, slowly they fall: the eggs shatter, the bread is smashed it is such a mess.
Eli, a 28-year-old banker, who shared his story
Receiving bad health news sparks great personal upheaval. Some people rage against the unfairness and some wither from sadness. Some people lose their faith, others find it. Some are torn between their fear of pain and their fear of death. Families are wracked by the threat of loss. It is a time when nothing is certain and the future looks dark.
And in the midst of this anguish, each one of us, irrespective of diagnosis HIV/AIDS, cancer, Alzheimer's disease, ALS, multiple sclerosis, macular degeneration will by necessity undertake a number of tasks to care for ourselves that we have probably never done before but that can have an important impact on the lives of everyone involved. We will:
This book provides practical guidance about how you and your loved ones might approach these tasks while you are in shock about your diagnosis and uncertain about how to respond to it.
It summarizes what research has discovered about each of these tasks. It features interviews with scores of people from all walks of life who have taken on these tasks as patients, as family members and as friends. It includes interviews with professionals who are involved with people just after they are diagnosed: doctors, nurses, clergy, social workers, psychiatrists, psychologists, as well as insurance administrators, clinic staff, and employers.
I wrote this book in the hope that this information, these insights, and these experiences will provide its readers with a sense of their choices without making them feel overwhelmed by what they must learn and do.
This has happened to me four times, each time stopping me cold, landing me in the hospital, forcing me to rearrange my time and responsibilities while my body was battered by drugs and surgery and then again while it healed and I figured out how to regain my strength.
Three times the diagnosis involved different kinds of cancer and once a dangerous heart condition.
All of them were unexpected. All were unwelcome. All of them disrupted my plans. And each one was eventually resolved and I returned months or years later to some variant of the life I had been leading before. At the time of my most recent diagnosis, I was writing another book on what the public needs to know about the potential and limitations of health research when my doctor scheduled me for a routine colonoscopy in honor of my 50th birthday. Since then, a large part of my colon and I have gone our separate ways and I am writing this book instead.
Each time I have received a serious diagnosis, I have been stunned, then anguished as I recounted my diagnosis to my family, explaining to them something I didn't fully understand and trying to reassure them while I was quaking at the prospect of what was to come.
Each time I have stood in awe of how much energy takes to get from the bad news to actually starting on the return path to health: figuring out whether my diagnosis was right and what course of treatment to take slogging through the tests, the Internet searches, getting to know all the new doctors and their receptionists, figuring out the insurance, comforting my parents all while feeling somewhere between extremely anxious and downright terrible.
I have learned much about this immediate post-diagnosis period from my own experiences and from the many others I have encountered over the years who have gone through these same anguished days.
I have spent the past two decades in the private, nonprofit and public sectors at AT&T, the American Cancer Society and the National Cancer Institute, working to help people use credible scientific information in their health decisions.
Since 1992, I have directed the Center for Advancing Health, a nonpartisan Washington-based organization whose mission is to improve health by promoting the translation of health research into information that individuals can use to make good decisions about their health and health care.
While I have had the bad luck of having these serious health challenges, I have also had some good luck for this book. My training gave me the technical background, and my professional position gave me the access to health care providers, staff and administrators so I could gather information and put it together into a readable form for others.
In writing this book, I interviewed more than 200 people: patients, family members, nurses, doctors, health plan administrators, managers of busy practices and nonprofit leaders. I know many of them allowed me to question them only because they accepted me as a colleague, either because of my professional background or because of our common experience of responding to a devastating diagnosis.
Along with this personal experience and background in biomedical, behavioral and social science I bring a strong conviction that this book is needed and that my perspective and the experiences of others will help those who find themselves scrambling for answers after the shock of the diagnosis of a life-altering condition.
It is popular in health policy circles to call people who use health care services "health care consumers."
I know lots of people who are superb consumers. They decide to buy a new camera and then dive into the task of fully exploring every aspect of the camera they want. They know which model has which functions; they know which manufacturers have better service records. They have price shopped and know exactly what the trade-offs are for price and quality. These people are great to talk to if you want to buy a camera.
I always try to talk to them because I am not like this. I want someone to say "Here is the perfect camera for you and look! It's on sale!"
I am especially like this when I have been given a new and really bad diagnosis. Then I want someone to say, "Here is what we are going to do to fix this and you will be completely cured in a couple weeks! Plus, everything will be covered by your insurance!"
But this hasn't happened. Each time I have received a serious diagnosis, I had no idea what I needed or wanted. The choices unfolded over time. Yet increasingly, I have had to force myself to act like a consumer with regard to my health care because there is so much uncertainty about what's wrong and so many options for what might be done about it; because no one else seems to be taking charge; and because I need to understand what is going on since the decisions I must make are going to affect how I live the rest of my life.
It's a funny thing: years ago when medical knowledge was far less advanced, everything seemed far more certain. Doctors pretty much told us what treatment we were going to get and that was it.
For some people this hasn't changed: we get a diagnosis and it is, as Laura, 49, an administrator, described it, "as though I got on the train and the train kept going," passed from primary care doctor to specialist who orders a specific course of treatment. All the patient does is show up.
For a variety of reasons, however, this is no longer the norm. A cultural change has taken place in the United States in recent decades. Whether as a reaction to the perceived excesses of managed care or out of a greater understanding of the gaps in knowledge about disease, people are deferring less to medical authority. The pace of discovery about health has accelerated; so much more is known now. And many doctors are reluctant to take charge the way they used to. Now there are treatment choices decisions that only we can make because they will affect whether we can walk or drive or live out our days drugged and in pain. Many of us are likely to have a number of specialists working on different aspects of our care. Our care may be influenced by our geographic location and insurance coverage.
And the upshot is that we have to act as consumers whether we like it or not.
This book is for both highly motivated and reluctant consumers. For motivated people, it illuminates the tasks that need to be done immediately after a diagnosis and gives you avenues to explore for more in-depth information. And for those who are reluctant, it explains why and how to do some very basic things that will help you figure out what decisions you must make so you can take the first few steps forward after hearing the bad news.
My aim is to give you a manageable number of good choices from among the millions that are available. In doing so, I have made many judgments about what to include and what to leave out.
My judgments are guided by these assumptions:
Receiving a life-altering diagnosis can cause tremendous emotional and spiritual upheaval but you still have to figure out the mundane details of getting the care you need and arrange your life to accommodate this new reality. This book focuses specifically on the practical aspects of what you have to do after you get a serious diagnosis, though it is written with an appreciation of the emotional anguish and panic you may feel.
People have the right to understand what is going on in their body and have a realistic sense of how treatment might affect it and the responsibility to make decisions informed by that knowledge. We are, after all, the ones who will live out our days with the consequences of our choices.
Science gives us the best shot at certainty about how the body works and thus gives us the best guidance about the onset, progression, and treatment of disease. Science, while imperfect, offers an objective, systematic approach that can correct its own errors. I put my faith in this approach over casual anecdotes as the basis of disease treatment any day.
Medicine is part science and part art, and doctors, nurses and other health professionals have training and experience that gives them the ability to tailor population-based research and risk ratios to one person's situation. While some are better at this than others, health professionals are key to capturing the full value of hard-won scientific knowledge in finding the right approach to treating you.
There are many ways to find the care you need immediately after a diagnosis, even though you are under considerable stress. The experiences of how others figured this out can increase your confidence that you are heading the right direction and reduce some of the uncertainty you feel as you make your way forward.
Most people are doing the best they can at any given time. This includes doctors and nurses and hospital administrators and the people who answer the phones at your health plan. But there are competing interests that may interfere. Sometimes those interests are a sick kid at home, sometimes they are the demands of too much work in too little time, and sometimes they are things like the need to make payroll or serve shareholder interests. This book is not a critique of health care in the United States. Rather it provides guidance about how to cautiously negotiate a confusing, complicated network of institutions and services.
While serious illness can shatter your sense of a well-ordered life, it does not mean that the strength and wisdom of your years are irrelevant to the challenge you face. No matter what your condition, you have choices. They aren't always the choices you would like, and sometimes it may feel like you are unprepared to weigh all the options and make the right decision. But you know yourself. You know what you need to be comfortable, and you know generally what you want.
The challenge will be to understand and make those choices with confidence that they are the right ones for you.
Every time I have received bad health news, I have felt like a healthy person who has been accidentally drop-kicked into a foreign country: I don't know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home.
This is a guidebook to help you find your way through these first few weeks. It provides information to help you avoid getting lost and to feel confident that you are doing what you can to resolve this crisis with as few wrong turns as possible.
It was written to be read in waiting rooms by people who are having a hard time concentrating. Most people are overwhelmed by the amount of information they have to take in during the time immediately after a devastating diagnosis. You need to learn about your disease and its treatment. There are thousands of sources where you can find this information. Which can you trust?
But you are more than your prostate gland or retina or nerve endings.
Understanding what has gone wrong in your body and what that means is important, but it is only a small part of what you need to know to get through this time. Figuring out how to manage your family life, getting the tests and finding the doctors to treat you while fending off work demands and worrying about how to pay for this unforeseen emergency require that you take in and act on a lot of information in a short time.
It is a little like trying to drink out of a gushing fire hydrant.
This book puts the water from the fire hydrant into gallon jugs that you can pour into a glass when you are ready for a drink. It divides the things you need to do during this period into manageable tasks.
This book has no plot that you need to follow from start to finish. Your experience with this diagnosis will unfold in a way that is unique to you. Use the Table of Contents or the Index to find the parts about what you are facing today; maybe read a little about what you think is going to happen next. The day after tomorrow, take another look: you will have moved on to another set of questions.
The book is organized to provide three levels of information on each of the subjects almost all people must address when they receive a devastating diagnosis.
1st Level: Each chapter opens with an aim. Each time I received a devastating diagnosis I had the same experience: my mind would swing back and forth between complete obsession with details how to get this test result to that doctor by Tuesday, for example and the black hole of grief and fear of the future. I couldn't concentrate on anything long enough to feel like I was making any progress.
To help you keep your focus on you where you want to end up as you take on these tasks, each chapter begins with "a North Star" a navigation aid that describes what you are trying to do here.
So, for example, your aim in finding the right physician is to "find doctors who treat you with respect, who listen and respond to your concerns, in whose expertise you have confidence and whom you trust to do their best for you."
Should you start to feel frustrated in your search for a doctor you can work with you think yours is smart but you really dislike his manner, for example go back to that orienting statement. Are you taking actions in line with that aim or are you getting bogged down in details? Are you obsessing about his insensitivity and not taking steps to find a specialist who is more compatible?
2nd Level: Each chapter contains information that will help you make decisions about what to do. The chapters are made up of short sections, each of which addresses a question about some aspect of the task you are taking on. The answers include both evidence-based information and the voices of individuals who approached the task at hand. So, for example, not only will you read about why you might seek additional opinions, but you will also hear from others including me about how we worried about offending our doctor, where to find other opinions, and how we resolved these concerns.
3rd Level: Appendices describe how and where to find the information, professionals and organizations described in the chapters. Some appendices stand on their own as "how to" assistance, so at some point, you may want to leaf through them to see if there is something you missed.
If you are reading this book and are not feeling the urgency and emotional upset of a serious diagnosis, you may find this book provides information that seems perfectly obvious, (how to talk to your doctor about getting another opinion, for example) or includes unnecessary details (what receptionists in busy specialists' offices think you need to know about scheduling an immediate appointment).
This book may not be for you. It is written for people who are feeling both desperate about their future and at a loss about negotiating the unfamiliar health care system. If you feel you don't have time or can't focus your attention sufficiently to figure out even what questions you should ask your doctor or how to narrow a Google search that has yielded 8 million hits, you need pretty specific help.
I have tried to offer such help here.