TRANSFORMATION: A Familyâ€™s Guide to Chronic Care, Guided Care, and Hope
TRANSFORMATION: A Familyâ€™s Guide to Chronic Care, Guided Care, and Hope by
Tom Grundner, Ed.D
www.CorteroPublishing.com An Imprint of Fireship Press
TRANSFORMATION: A Family’s Guide to Chronic Care, Guided Care, and Hope - Copyright © 2010 by Tom Grundner All rights reserved. No part of this book may be used or reproduced by any means without the written permission of the publisher except in the case of brief quotation embodied in critical articles and reviews.
BISAC Subject Headings: MED032000 MEDICAL / Geriatrics MED041000 MEDICAL / Home Care FIC035000 FICTION / Medical
Address all correspondence to: Fireship Press, LLC P.O. Box 68412 Tucson, AZ 85737 Or visit our website at: www.FireshipPress.com 1.0
CHAPTER ONE: It's too late.
CHAPTER TWO: Give us a disease and we'll fix it.
CHAPTER THREE: I go back to school… literally.
CHAPTER FOUR: Not on $48 I can't!
CHAPTER FIVE: Suddenly, I loved nursing again.
CHAPTER SIX: The ride home.
Transformations is perhaps the most unusual book I've ever done, so let me tell you a bit about why and how it was written. In my "day job" I am the Senior Editor of Fireship Press, and getting more "senior" every day. Like many of the people who will be reading this book, I am in my mid-60s and taking a long, thoughtful, look at retirement. Originally, I thought the only question I needed to answer was: Am I ready for retirement? Now, after listening to the recent debates over health care reform, I began to wonder whether retirement was ready for me. I was born in 1945. I am at the leading edge of the postwar baby boom; and there's a tidal wave of people right behind me who will be entering their golden years pretty much at the same time. Like me, they will be seniors and getting more senior every day, and soon we will be placing unprecedented demands on our health care system. Hello, world! Are you ready for us? It turns out the answer is: yes and no. Simply put, the health care system is not ready, especially when it comes to the management of patients with multiple 1
chronic illnesses. And what do many older people tend to have? You guessed it. Multiple chronic illnesses. At the same time, there is some fantastic work going on with health care models that might well transform the way health care is delivered for everyone, not just those with chronic conditions. I knew there were millions of people who needed to know about this. No, let me re-phrase that. They really, really, needed to know; and I needed to write about it. But how do I go about doing that? I am not a physician. I am not a nurse. I am not a medical professional of any kind. Now is perhaps the time for an embarrassing revelation. Once upon a time I was a college professor. Now, gentle reader, don't be too harsh in your condemnation of my initial career choice. It's not like I am admitting to having been a lawyer or a politician—although I know it’s close. It was all part of a protracted misspent youth; but it did leave me with some good friends who were still in academia. Chief among these was Dr. Chad Boult, who is one of the leading figures in the health care revolution I am about to describe. His help in pointing me to appropriate resources was invaluable. But the biggest hurdle was not whether to write; it was how to write about it. I refused to crank out yet another ghastly piece of "patient education" material—you know, those things that read like insurance company brochures. Like a Roman general of old, I would sooner fall on my Bic pen and end it all. But, if not that, then what? If being an editor is my day job, my night job is as an historical novelist. People like historical novels. Why? Because they painlessly inject fact into an enjoyable, easy to read, fictional context. Why couldn't that be done with patient information? Why couldn't there be another way of doing it in which medical fact is embedded in a fictional matrix? That way perhaps patients and their loved ones might be more likely to read and 2
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actually understand it. That's the approach I chose. This book is factual in that the information presented is accurate; but it's told in a story form, and the story is quite fictional. Think of it as the literary equivalent of adding flavoring to cough syrup. So whatâ€™s fact and whatâ€™s fiction? The characters, including Fred Carlson, Darlene, and the doctors, are made up. However, the situations faced by people like Darlene and her father are all too real. The medical institutions I describe, the organizations, the research, Chad Boult and his publications, are entirely factual. Now, admittedly, the plot line of this little novella will not exactly rival those of Steven King; but, nevertheless, I think you'll find the medicine going down a bit more easily. Enjoy and learn. Tom Grundner Tucson, AZ
CHAPTER ONE IT’S TOO LATE
My questions were innocent enough; but his answers rocked me—and it was his answers that launched this book. I should probably start by saying that I hate going to the doctor. I don’t hate it as much as going to the dentist; but it’s a close second. I guess I am “olde school.” I grew up in a time when the dentist meant unavoidable pain, and the doctor meant unavoidable cost. You didn’t do either unless you absolutely had to. The times had changed, however, and so had my circumstances. Dentistry was now nearly painless; and I had excellent insurance to cover most of my medical costs. There was no reason to fear either, but I did, and for the same reasons. Old habits die hard. I entered the chrome and steel palace that housed my internist, and proceeded through my annual physical. Weight… more than it should be. Heart… not good but still ticking (I had a heart attack in 1999). Still smoking… yes (Don’t beat me, doctor!!). Drinking… no (I was never much for that). Lungs… clear. Blood pressure… normal. And on it went to the highly anticipated grand finale, the prostate check. 5
As I was getting dressed, I asked a question of the man who has been both my physician and my friend for over 20 years. “Charlie, I've been a writer all my life, so I've never had a real job from which to retire. But I am turning 65 next year and thinking of at least slowing down. What about you? You’re older than I am. When you gonna get out of this medicine racket?” “I don’t know," he replied. "Prob'ly next year also; I’ve been thinking about it a lot lately. There’s a whole bunch of fish in Minnesota that need catching, and I am just the guy to do it. I consider it my next calling in life.” “So, you’re going to leave me to the tender mercies of some young whipper-snapper just out of medical school?” “Nope.” “Then what?” “I don’t know, Tom. I really don’t.” I could see him shifting back into serious-doctor-stuff mode. “I can’t keep practicing forever; and there’re not enough doctors coming up?” “Whaddya mean? I don’t recall hearing about medical schools having trouble filling their classes.” “Oh, we’re producing doctors all right. It’s just they’re not going into primary care. And when it comes to geriatrics—treating old fogies like you—forget about it. Nationwide we only produce a few hundred geriatricians a year. That’s it. That’s not even enough to replace the old goats like me when we retire, let alone handle the post-war baby boomers that are coming up.” “Oh, come on. Surely there’s something that can be done.” “Nope” he replied. “It’s too late.” I thought he was kidding. He was not. He continued, “Well, maybe something could have been done thirty years ago, but not now. Given the length of time it takes to train an internist, or a family physician, or a geriatrician… Given that
Tom Grundner, Ed.D
the post-war baby boom is already on the edge of retirement…” And he shrugged his shoulders. I piled into my car for the drive home and tried to listen to the radio. I couldn’t. His words kept replaying in my head: “It’s too late.” That can’t be right, I thought. I was part of a huge population bubble that had been floating down life’s merry highway since the late 40s and early 50s. I mean, it’s not like we snuck-up on anyone. So, now that we’re nearing retirement, he’s saying that there won’t be enough doctors trained in the right fields to take care of us? I decided that couldn’t be, so when I got home I fired-up the old computer to check things out for myself. He was right. It was the result of several factors, a perfect storm of circumstances, but he was dead right. The problem, it seems, begins with my generation. Between 1946 and 1964 over 77 million babies were born, dwarfing the previous decades. In the 1930s, families faced the Great Depression. In the early 1940s, we had World War II. Neither event was exactly conducive to large-scale procreation. But beginning in 1945 the men started returning from the war, and most women gratefully gave up their jobs in the tank plants to become mothers and raise families. Add to that the economic prosperity of the times, and you have a prescription for kids—lots of them. But time marches on. We entered the school systems, and there was a shortage of classrooms and teachers. We entered the work force, and there was a shortage of jobs. But we got it all sorted out, raised families of our own, worked hard, and planned for a happy retirement. In the meantime, medicine was changing to keep pace with our needs. Originally there was something called a “general practitioner.” This was a medical school graduate, who took one year of internship, and hung up his or her shingle. By the late sixties this became a dying breed as more and more physicians went in to specialties, subspecialties, 7
and sub-subspecialties. There was concern that the “GP” would not be able to keep up with the rapidly advancing medical field. So, in 1969, another specialty was born— family medicine. Family physicians were a different breed of cat. They all did four years of medical school, of course; but then they went on to a three-year residency, followed by a stiff board certification exam. Because their residency contained rotations in fields like internal medicine, pediatrics, obstetricsgynecology, psychiatry, and geriatrics, their eventual practice contained elements of everything. They took on all comers—both sexes, any age, any organ system, and every disease. In effect, they became the portals to the rest of the medical world. The patient would see their “family doc” first. If needed, he or she would be referred to a further specialist. But the key difference was that the family doctor did not just hand the patient off and forget about him. He or she was trained to view the patient and his illness in the larger context of his family and his life. He didn’t just look at the patient’s biology, he was concerned with the psychological, social, and economic factors as well. If you wanted to know how a loved one was doing, you didn’t have to call around to 14 different specialists and piece things together, you called the family doc. He or she would know what was happening because his job was to stay on top of your loved one’s case, to coordinate the various specialists and treatment plans, to know what was going on and why. After all, he knew the patient; he knew you; he knew your kids, he knew your circumstances, and all were taken into account. The family medicine model changed the way all primary care was delivered, from internal medicine, to geriatrics, to pediatrics. But, it wasn’t to last. There are a lot of theories as to why we’re not producing the number of primary care physicians that we used to. Some 8
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say that it’s because primary care is not as glamorous, or that it doesn’t pay as well, or because of the high cost of malpractice insurance, or because of the administrative hassles and frustrations of the modern practice environment. What is not at issue is that the number of primary care physicians has nose-dived. I continued reading my computer screen and saw data popping up like this: U.S. Medical Students Going Into Family Medicine 3000
But the shocker came a few paragraphs later. It said that in 2006 we had just over 100,000 family physicians in this country. Given that number, if we wanted to meet the needs of the post-war baby boom, we would have to produce 4,439 family docs a year! I quickly scrolled back to table I had just seen. 4,439 a year? Heck, the residency programs weren’t producing even a third of that number!
All right, I thought, but that’s only one primary care specialty. What about the others? It seems things are equally bad there. • In 1998, over half of the internal medicine residents chose primary care careers. Ten years later, only about 20% did. • Between 1998 and 2004 the number of geriatricians fell by a third. • And if that wasn’t bad enough, only about 3% of our medical school graduates had ever even taken a course in geriatrics! Then came the kicker. I looked up how many seniors there will be in the coming years. 2010 - Americans age 65 or older - 40 Million 2020 - Americans age 65 or older - 55 Million 2030 - Americans age 65 or older - 70 Million So, while all this is happening—as more and more people are entering old age—the bottom is falling out of the number of physicians being trained to take care of them. I had no idea this kind of situation was developing. I felt like I was watching a slow-motion train wreck, with the added thrill of being a passenger on the train. My initial reaction was one of fear for my own situation, followed quickly by anger at the pinheads that allowed this state of affairs to develop, followed by frustration. "But what the heck can I do about it?" I muttered to myself in disgust. "I am not a doctor. I am not a politician. I am not an educator. I am just a… I am just a writer… " And I froze for a moment. If I have any skill at all in life, it's that I can write. Now, there are people who would argue that even that talent has eluded me, but I've made a pretty good living at it over the years. I am especially good at explaining complex things in ways that average people can understand. Well, here was a complex thing; and, boy, do people ever need to know about it. 10
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I leaned back in my chair with a hundred ideas swirling in my brain, all competing for attention. With the subtlety of a Las Vegas slot machine paying off, one idea finally emerged, marched to the front of my consciousness, and took up residence. I picked up the phone and called an old friend of mine. He and I were cub reporters together back in the late 60s, and we had stayed in touch ever since. Several years ago he had become the Senior Editor at one of those glossy suburban magazines in the Washington, DC area. But, instead of continuing it as the usual vanity-rag, he started running articles of genuine substance. To be sure, there were still fourcolor pictures of Buffy and Tyler Van der Something at the charity ball, smiling at you through $25,000 worth of dental work. But, it was also a magazine that was gaining respect in the DC areaâ€”and Washington DC was where the article I had in mind needed to be read. I got him on the third ring. No secretary to intercept his calls. He too was olde school. I outlined the situation, the possibilities for a feature piece, and that I would need to come out there to research it. He immediately agreed to the article, pointed out the magazine's limited payment rates, insisted that they could not pay for travel, and said he'd publish it, but only if I bought dinner when I came out. I smiled. Alex hadn't changed a bit. I readily agreed. Several days later I became a 192 pound airborne sardine, and was winging my way from Tucson to Washington, DC.