Old and Sick in America: The Journey through the Health Care System

Old and Sick in America

STUDIES IN SOCIAL MEDICINE

Allan M. Brandt, Larry R. Churchill, and Jonathan Oberlander, editors

This series publishes books at the intersection of medicine, health, and society that further our understanding of how medicine and society shape one another historically, politically, and ethically. The series is grounded in the convictions that medicine is a social science, that medicine is humanistic and cultural as well as biological, and that it should be studied as a social, political, ethical, and economic force.

MURIEL R. GILLICK, M.D.

Old and Sick in America

The Journey through the Health Care System

The University of North Carolina Press   Chapel Hill

© 2017 The University of North Carolina Press

All rights reserved.

Set in Arno Pro by Westchester Publishing Services

Manufactured in the United States of America

The University of North Carolina Press has been a member of the Green Press Initiative since 2003.

Library of Congress Cataloging-in-Publication Data

Names: Gillick, Muriel R., 1951– author.

Title: Old and sick in America : the journey through the health care system / Muriel R. Gillick, M.D.

Other titles: Studies in social medicine.

Description: Chapel Hill : University of North Carolina Press, [2017] | Series: Studies in social medicine | Includes bibliographical references and index.

Identifiers: LCCN 2017029456 | ISBN 9781469635231 (cloth : alk. paper) | ISBN 9781469635248 (pbk : alk. paper) | ISBN 9781469635255 (ebook)

Subjects: LCSH: Older people—Medical care—United States. | Older People—Health and hygiene—United States. | Medicare. | Older People—Long-term care—United States. | Medical care, Cost of—United States.

Classification: LCC RA413.7.A4 G55 2017 | DDC 362.1084/6—dc23

LC record available at https://lccn.loc.gov/2017029456

Cover illustrations: Walker icon by Koen Voogd and Heart icon by Alice Noir, from thenounproject.com.

In memory of my father, Hans Wolfgang Garfunkel, 1924–2016

Contents

Prelude

Abbreviations in the Text

Part I

The Office

CHAPTER ONE

Going to the Doctor

CHAPTER TWO

The Lay of the Land

CHAPTER THREE

From the Outside In

CHAPTER FOUR

The March of Time, 1965–2015

Part II

The Hospital

CHAPTER FIVE

Entering the Palace of Technology

CHAPTER SIX

The Varieties of Hospital Experience

CHAPTER SEVEN

The Hospital through Other Eyes

CHAPTER EIGHT

The Transformation of the American Hospital, 1965–2015

Part III

The Skilled Nursing Facility

CHAPTER NINE

Going to Rehab

CHAPTER TEN

Different SNFs, Different Miffs

CHAPTER ELEVEN

Movers and Shapers

CHAPTER TWELVE

Now and Then

Finale

Acknowledgments

Notes

Bibliography

Index

Prelude

For over seventy-five years, Americans have been arguing over whether medical care is a right or a privilege. We began arguing during the 1930s, when the first private insurance companies began to appear and when prepaid health care was born. We argued after World War II, when President Truman tried to introduce national health insurance. And seven years after the passage of the Affordable Care Act, which provided a path for every citizen to get health insurance, we are still arguing. But it’s only the young and the middle-aged whose rights and needs are being debated. For those over age sixty-five, the right to health insurance coverage is a done deal and it has been since the passage of Medicare in 1965. Seeing a physician, going to the hospital, getting rehabilitative care and, along the way, undergoing tests and taking medicines, are all part of the fabric of modern life for older Americans. So much so that we tend to assume that the way things are in health care—the organization of medical care—is the way things have to be. Physicians are rushed and the office is difficult to get to? That’s just the way it is. Hospitals make the oldest and frailest of patients disoriented and discharge them so quickly they have to go to rehab before returning home? That’s the way the system works. Medications are expensive and produce side effects? That’s the price you have to pay for a cure. Procedures are risky and perhaps unnecessary? That’s the chance you must take if you want the marvels medicine has to offer.

What happens to people as they journey through the health care system is actually not nearly so inevitable and immutable. It’s a product of our uniquely American version of medical care. How people react to sickness and to its treatment reflects their personalities, their culture, and the organization of medical care. The patient’s experience today is different from what it was fifty years ago and from what it is in other parts of the developed world. But it’s not just the patient’s reaction that has changed; what happens, what is done or not done, the tests they have, the drugs they take, in the most general sense, how they are treated, has changed. The question is, what determines the shape of medicine today and how did it get this way?

In the course of my last thirty years as a practicing physician, I’ve repeatedly asked why things are the way they are. How do large machines—computerized tomography (CT) scanners and magnetic resonance imaging (MRI) equipment and radiotherapy machines—end up in hospitals? Why is most medical training in the hospital even though most medical care is delivered in the office? And most fundamentally, what aspects of the health care system shape the patient’s experience? What forces mold and influence that experience, where by experience I mean something more than just the patient’s degree of satisfaction with care, although that’s part of what shapes experience. I’m interested in not only what happens to patients but also the ways that the structure and practice of medicine affect the patient’s well-being, level of functioning, and recovery from acute illness.

I first realized that what doctors and patients take for granted could look very different—and perhaps be dramatically better for patients—when I was in medical school. I was on a clinical rotation, a two-month, intensive experience on the cardiology service of a major teaching hospital in Boston. A group of us, two medical residents, two interns, and me, were on rounds, going from the bed of one patient to another, checking on their progress, reviewing their lab test results, ordering more tests and more medications. Suddenly, the public address system crackled and came to life, announcing a code blue: a cardiac arrest.

The pager worn by the medical resident with whom I was working went off, along with a chorus of other ring tones. We—the resident who was head of the code team, two medical interns, a technician wheeling an electrocardiogram (EKG) machine, and I—all ran to the room of the patient whose heart had stopped and who was no longer breathing. The resident in charge spoke briefly with the patient’s nurse and then summarized what he’d learned: Ninety-year-old white female, admitted with congestive heart failure, found in bed unresponsive. He took up a position next to the EKG machine, which began spitting out an extended strip of paper with the patient’s heart rhythm. There wasn’t much to see—the rhythm was flat line, showing no electrical activity at all.

One of the residents leaned over the patient and, one hand on top of the other, began methodically compressing the chest while a second resident squeezed oxygen into the patient’s lungs through an ambu bag, a rubber bag connecting an oxygen tank to a mask over the patient’s face. The resident barked out orders: ten milligrams of this medication, ten milligrams of that, everyone stand back, get ready to shock, resume chest compressions. For half an hour, the drama went on. And then, when the EKG still showed a flat line, the resident called the code and everyone backed off. He looked up at the clock and solemnly intoned the time of death, which was duly recorded by the nurse who had been keeping track of every medication administered and every heart rhythm reported.

The physicians in training filed out of the small single room where the attempted resuscitation had taken place. They were joined by several other young physicians in training who were not part of the code team. What did you get to do? one of the interns asked, a hint of jealousy in his voice. I put in a central line, his fellow house officer told him—a catheter inserted into a large vein in the neck that leads directly to the heart. I almost got to put in a temporary pacemaker, a second resident said, but they called the code. He sounded disappointed.

I glanced at the patient, unclothed and lifeless on the bed. The nurses were removing the intravenous lines, the EKG electrodes, and the urinary catheter from her small, shriveled body. All that remained was her watch and a wedding ring. Her face was frozen in a frown. I noticed a vase of pink and yellow flowers on the windowsill: somebody had been thinking of her. A nephew? A granddaughter? A friend? Did the person who sent the flowers know she was gone? The room was suddenly very, very quiet.

Why, I wondered, had the house staff even tried to resuscitate someone who was ninety years old and had a failing heart? Had anyone spoken to her family? Had she known how seriously ill she was? Had the possibility of death even been raised? Who was going to contact her family now? Did she even have a family? I never found out.

Other people—physicians, lawyers, and the budding profession of medical ethicists—were also asking how and by whom important medical decisions were made. Over the ensuing decade, medical care was transformed to include far more communication between doctors and patients. Patients were increasingly expected to become engaged in their care, and their doctors were supposed to offer them the possibility of participating in medical decision making and in monitoring and treating disease. Evidently, merely asking why things are the way they are can lead to a change in the practice of medicine. It is the first step on the road to reforming the health care system, and so the importance of understanding the forces behind the patient’s experience is the first theme of this book.

Asking what mysterious forces shape the reality that both patients and doctors tend to take for granted has become something of a habit for me. As a physician, I know I need to conform to professional standards. I have to act in the ways that everyone expected: I have to order the recommended tests, prescribe the customary medications, and make the usual referrals. But whenever a new technology becomes available—CT scans were just appearing when I was an intern, and MRI and positron emission tomography (PET) scans had yet to be developed—I always wonder where it came from, and how it made its way into medical practice. The same for medications: when I was starting out, we often used the drug reserpine in the treatment of high blood pressure; today, reserpine is dismissed as causing cancer (it produced tumors in mice when administered in doses many times greater than the usual therapeutic dose), and far more expensive medicines such as angiotensin converting enzyme (ACE) inhibitors are used instead. Even the institutions in which patients receive care have changed dramatically: when I was in training in the late seventies and early eighties, patients stayed in the hospital until they were well enough to go home. If they were unable to return home, perhaps because they had had a stroke and did not have anyone to care for them at home, they would enter a nursing home. Today, by contrast, patients stay only a short time in the hospital and then recover either at home or in a post-acute care facility, a short-term, less intensive site of inpatient care.

Sometimes the answer to the question of why medical practice changed is rooted in science; it is what has come to be called evidence-based. Medical scientists conduct a study that shows that a new medication or test or procedure works better than its predecessor, and soon everyone is using the new product. Sometimes the answer to why comes from outside medicine altogether—consumerism in the surrounding society trickles down into medicine, resulting in better-informed patients who demand a role in their care. Suddenly, patient-engagement and self-management of disease are all the rage. And sometimes the answer to why the patient experience is the way it is proves to be more complex.

Just how complex became evident when my friend Joanna told me about her eighty-three-year-old uncle who lived alone in a condominium in Florida. Uncle Ned, my friend explained, had always been a bit of a loner—he was a widower who had no children and had worked as a chemical engineer in a job that didn’t call for a great deal of human interaction. He had a strong stubborn streak that had only become more pronounced with age. My friend and her sister, neither of whom lived in Florida, were his only surviving relatives. They were concerned because Uncle Ned was not eating well, which was particularly problematic since he was a diabetic taking insulin and at risk of developing dangerously low or excessively high blood sugars. Moreover, both he and his condominium were—Joanna struggled to find a diplomatic way of expressing her concern—untidy.

My friend felt her uncle would do better in an assisted living facility that would provide housekeeping, meals, and opportunities for socializing. Short of that, she hoped he would accept a housekeeper. She also felt he needed a medical evaluation as she strongly suspected his cognition was not what it had once been. Uncle Ned said there was no way he was moving into one of those places for old people. He made it quite clear that he believed he did not need any help at home. But he did agree to see his primary care physician, ostensibly to see how well he was controlling his diabetes. When he went to the doctor, she performed only a cursory examination of his mental status and ordered blood tests and a CT scan of his brain. When those were all negative, the doctor said she would not be able to prescribe any medications for Ned—or do anything else to help him—unless he got a PET scan that she claimed could definitively diagnose Alzheimer’s disease.

That’s when my antennae went up. A PET scan to diagnose Alzheimer’s disease? There is no test to definitively diagnose Alzheimer’s disease short of a brain biopsy (or autopsy). A careful history and physical exam, however, can correctly diagnose the disorder in 90 percent of cases. But a PET scan is an expensive radiologic exam that I was reasonably certain was of no proven value in diagnosing Alzheimer’s. Did Ned’s primary care physician really insist on a PET scan?

Apparently she did. She went so far as to say she would not even arrange for a visiting nurse to check Ned’s blood sugars at home or a home health aide to help him bathe until she had the results of the PET scan. Intrigued, I decided to look into the situation.

The facts about PET scans and dementia were reasonably straightforward. The American Academy of Neurology, a leading professional society, does not recommend routine use of PET scans in establishing the diagnosis of Alzheimer’s disease. Medicare, after initially refusing to reimburse for any PET scans done in the course of a work up of dementia, relented slightly and agreed to pay for PET scans in the one circumstance in which they had been shown to be useful—when explicitly performed to distinguish an unusual form of dementia called frontotemporal dementia (seldom found in people over age seventy-five) from Alzheimer’s.

The facts about Florida and x-rays were also fairly straightforward. Florida is the Medicare radiology capital of the United States. In the era when Ned was sent for his scan, Florida was number two in the country in spending on imaging, as radiologic tests of all sorts are called, for patients with chronic disease in the last two years of life. And while federal anti-kickback laws prevent doctors from referring patients for tests in a practice that they own, physicians have come up with all kinds of lucrative self-referral arrangements to get around the restrictions. These involve leasing deals or time-share arrangements, which Florida uses in abundance. Sometimes physicians and hospitals simply flout the law and hope they will get away with it. The Baptist Hospital of South Florida, for example, began paying community physicians to refer patients to an MRI facility that the hospital owned—and ended up forking over $7.8 million to the U.S. Department of Justice as a settlement for its illegal behavior.¹ Why was there a PET scanner in the small Florida community where Uncle Ned lived? And how did his primary care physician know about it and believe it would be useful to diagnose Alzheimer’s disease? After all, if the equipment had not been available nearby, getting a scan would not have been an option. And if the doctor hadn’t ordered the test, Ned certainly wouldn’t have gotten it.

Apparently, Florida is fertile territory for all things medical. Florida has one of the highest percentages of elderly patients of any state. And the culture in Florida is conducive to the use of more and more health care resources: the social life of many older people revolves around their doctors’ appointments, their tests, and their medicines.² The net effect is that Medicare spends more per capita on Floridians in their last two years of life than the national average: in 2011–12, Medicare spent an average of $78,998 per patient in Florida, topped by $84,489 in New Jersey, but overshadowing North Dakota, where expenditures were a mere $47,183 per person.³

It’s not surprising that a radiology facility would want to set up shop in Florida, given the high level of interest in medical technology. But once established, it would need to attract customers. That means persuading doctors and patients that PET scans offer something special, which is exactly what Florida imaging centers tried to do through advertising. One facility boasted about its PET scan capacity on its website, claiming (falsely) that PET can diagnose Alzheimer’s disease years before symptoms begin, and asserting (misleadingly) that Medicare approves the use of PET scans in the diagnosis of Alzheimer’s disease.⁴

Physicians are not just influenced in their behavior by local hospitals, whether through television spots, newspaper ads, billboards, or direct appeals; they are also influenced by the device manufacturers themselves. An Institute of Medicine report on conflict of industry in medicine found that 94 percent of physicians had some kind of relationship with industry, and physicians in solo practice or very small group practices were far more likely to have such interactions than other doctors—and far less likely to adhere to clinical practice guidelines, the evidence-based advice issued by professional societies. This kind of pernicious influence can take the form of industry-sponsored educational programs that are sometimes thinly veiled propaganda sessions or one-on-one detailing in which an industry representative personally makes the case for a device or drug.⁵

I cannot be sure why a primary care physician in Florida insisted on a PET scan for my friend’s Uncle Ned, but I’m reasonably certain there was no medical justification for the test. And I can make a pretty good guess as to what happened. PET scanners in the early 2000s were a technology in search of a disease—ultimately, they would be widely used in determining the extent of many types of cancer and monitoring the progress of treatment—and their use in the diagnosis of Alzheimer’s was a promising possibility. About 500,000 people develop dementia each year; if all of them had a PET scan as part of their evaluation, that decision alone could keep the machines whirring. Imaging centers everywhere decided to invest in PET scanners, particularly facilities that were aided and abetted by the availability of Medicare reimbursement in states like Florida with large concentrations of older individuals. Medicare’s decision to reimburse for the scan under select circumstances was in turn influenced by political pressure, but that’s another story.⁶ As soon as the imaging facilities brought in the new technology, they sent out brochures to area physicians, they gave lectures at hospitals, and they may even have sent representatives to visit physicians’ offices to introduce their test. At the same time, they raised awareness of their new capability by targeting prospective patients and their families with advertising. Their promotions emphasized that the scan was approved for diagnosing dementia, with the small print explaining that Medicare would pay for the test provided the physician mentioned the phrase frontotemporal dementia. When Ned’s doctor was faced with a patient who clearly had something very wrong with his thinking and his judgment, she knew just what to do—she would order a PET scan.

The key to understanding Uncle Ned’s experience isn’t quite so simple as the case of the ninety-year-old woman undergoing attempted CPR. Why Uncle Ned’s doctor ordered a PET scan when there was no clinical evidence that this was necessary or even useful, and why Ned couldn’t even access home services unless he obtained the test, wasn’t just due to a few bad apples, doctors who are incompetent or corrupt. It can’t be explained by greedy capitalists who wanted to make a lot of money by peddling their machine. In fact, the inventors of the PET scanner no doubt believed strongly in the value of their creation, though they needed to find the ideal applications for their machine. It’s not just a consequence of our health insurance system, in which patients often regard tests as free because they don’t have to pay for them out of their own pockets. Ned’s experience with the health care system was shaped by the interplay of several powerful actors on the health care stage: physicians, device manufacturers, health insurance companies, and popular culture. This is the second major theme of this book: lurking behind the scenes whenever an older patient undergoes medical care are many forces that interact with each other, reinforcing one another, creating elaborate feedback loops, and together comprising a complex system. As with any such complex system, the components seek to maintain their prevailing relationships; they will adapt to any perturbation in ways that attempt to preserve the status quo.

One part of the ecosystem that I’d never paid very much attention to was the Medicare program. But then I began writing an article about the influence of Medicare on the experience of death and dying, and I quickly realized that the Medicare program—both as it was initially created in 1965 and as it evolved over the years—affects just about every aspect of end of life care.⁷ The most obvious way that Medicare affects the way people die, and what everyone first thinks of, is through its hospice benefit. Enacted in 1982, seventeen years after the passage of the initial Medicare legislation, hospice was introduced as a special variant of Medicare. People who develop an illness that, in the normal course of events, could be expected to be lethal within a matter of six months or less, are eligible to enroll—if they want to. What they get is a very different model of care, focused on keeping them home and comfortable until they die. But there is a quid pro quo. In exchange for enhanced home care services, patients are asked to forgo any curative treatment of their disease and to restrict hospital care.

Hospice has grown to the point where over 40 percent of Medicare enrollees who die have received hospice services. But because Medicare hospice is limited to people with a very poor prognosis, and because hospice requires giving up various treatment options in exchange for intensive home care, patients typically end up getting hospice care for little more than two weeks. More than a third of patients get hospice care for a week or less.⁸ The rules and regulations governing Medicare hospice clearly influence how we die. But it turns out that Medicare affects far more than just the last six months of life.

Medicare also influences when we die, that is, how long we live. After the introduction of Medicare, mortality rates among older people began a steep decline. The most dramatic fall was in the death rate for heart disease, and since heart disease is the leading cause of death in older people, the net effect is that life expectancy at age sixty-five increased shortly after the passage of Medicare and has continued to increase since then.⁹

It’s impossible to prove that it was Medicare that produced this salubrious effect and, in fact, death rates fell in the 1960s throughout the developed world, both in countries that had recently expanded insurance coverage to elders and in those that had not. But some analyses suggest that the American Medicare program did affect age-adjusted death rates in the ten years after it was introduced.¹⁰ It is also striking that the United States currently performs poorly in all international rankings of the quality of health care except in the quality of care for people over age sixty-five, making a compelling case that providing universal insurance coverage for older people has had an impact.¹¹ Medicare matters. It seems very likely that, at the very least, Medicare promoted changes that led to longer lives for older people.

Medicare also influences how we die: the procedures we have and the medications we take. Once again, the way it does this is indirect. But by reimbursing generously for technology-intensive, hospital-based care, and poorly for labor-intensive, home-based care, the program tends to favor an aggressive approach to care near the end of life. Among elderly Medicare enrollees who died in 2008, nearly one-third underwent a surgical procedure in the last year of life—including 18 percent who had surgery in what would prove to be their last month of life and 8 percent in their last week.¹²

By mandating that Medicare drug plans cover essentially all chemotherapy drugs, Medicare assures that older patients have access to even the most marginally beneficial medications. This financial incentive, combined with the reluctance of many oncologists to discuss prognosis with their patients, results in patients receiving chemotherapy in the last two weeks of life, although this is generally regarded as a marker of poor quality care.¹³

If Medicare has such diverse effects on what happens to patients as they approach the end of life, perhaps Medicare could also affect people like my friend’s Uncle Ned—even though a variety of different forces appeared to impact his situation. We know that many complex adaptive systems, as big complicated systems such as health care are often called, turn out to have just such levers; perhaps what happens to patients as they journey through the health care system can similarly be understood in this way.¹⁴ Demonstrating that Medicare plays an outsized role in shaping medical care for older individuals in the United States is the third theme of this book.

Old and Sick in America: The Journey through the Health Care System is about what happens to older people when they become patients, it is about the hidden forces that mold their experience, and about the way those forces together form an ecosystem. And it offers some suggestions about how that ecosystem can be modified to create better care for patients: improved outcomes, greater satisfaction, and more attention to those needs of the older patient that truly matter because they determine quality of life.

I begin where most patients begin their health care journey, with a visit to the doctor. For the majority of older individuals, this means seeing a primary care physician, usually an internist or a family practitioner, in an office setting, so Part I is concerned with office care. Chapter 1 focuses on the specific experience of a particular patient—my father-in-law, Saul. What it was like for him, sometimes a positive experience, sometimes not so positive, highlights some of the crucial aspects of being a patient as it is in the office that the doctor-patient relationship grows and develops. Recognizing that one person’s experience may not be representative—though I have chosen the vignette to embody what I take to be the most important features of ambulatory care—chapter 2 asks whether other practice arrangements make a difference. Ownership, reimbursement, and organization vary, with arrangements ranging from solo practice at one extreme to large, multispecialty group practices at the other, from physician-owned to hospital-owned, and from exclusive, cash-only concierge practices to models in which all forms of insurance are accepted. Chapter 3 examines how various powerful actors within the health care system—physicians, hospitals, device manufacturers, the pharmaceutical industry, and Medicare—shape what happens to patients in the office. Chapter 4 contrasts the small, intimate, low tech practice of outpatient medicine fifty years ago with the multiphysician, rule-driven, computerized practice of today and asks what factors are responsible for the change. I look for the answer in three distinct domains: scientific advances in medicine, social trends, and legislative developments.

The next encounter with the health care system for many older patients, and the subject of Part II of Old and Sick in America, is with the hospital. The modern hospital offers an unprecedented array of diagnostic procedures and treatments, from biopsies to surgery—to attempted cardiopulmonary resuscitation (CPR), as I observed early on in my medical training. Chapter 5 begins with a sample patient’s experience, the story of Barbara Ellis, who was admitted to an academic teaching hospital for treatment of congestive heart failure. Her acute medical problem was successfully treated, but not until after she had developed multiple complications. Chapter 6 broadens our view of the prototypical hospitalization by putting Barbara’s experience in perspective. I compare the world of the teaching hospital to that of the small community hospital, the for-profit hospital to the not-for-profit hospital, the free-standing hospital to the hospital that is part of an entire health system. Chapter 7 shows how the medical profession, the hospital CEO, drug and device manufacturers, and Medicare influence what happens to patients in the hospital. Chapter 8 contrasts the modest-sized, nonprofit hospital of the early 1960s with the streamlined, high tech, business-oriented hospital of today and asks what produced the change. Once again, I identify scientific advances, social trends, and health policy as all playing a role.

Part III takes us to the next stop on the health care journey, the skilled nursing facility (SNF). Each year, 20 percent of all Medicare fee-for-service beneficiaries (and probably an equal number of Medicare Advantage patients) are transferred to a SNF (pronounced ‘sniff’) for post-acute or rehabilitative care upon discharge from the hospital. Chapter 9 tells the story of Taylor Bryan, one of the 1.7 million Medicare patients each year who spend time in a SNF. Admitted for recuperation and rehabilitation after a long hospital stay for heart disease and its complications, Taylor suffered a setback on the road to recovery and was readmitted to the hospital. Chapter 10 moves beyond Taylor’s experience in a free-standing, not-for-profit nursing facility to explore how for-profit nursing homes, chains, and teaching nursing homes affect patient care. Following the now familiar pattern, chapter 11 examines the role of nursing home administrators, hospitals, drug and device companies, the medical profession, and government in shaping the SNF experience. Chapter 12 contrasts the nursing home of the early 1960s, which was a residential facility housing those who could not care for themselves, with the medical institution focused on post-acute care that it has become today. I review the advances in medicine, the social trends, and the legislation that are responsible for the changes.

The book’s finale opens with another patient story, this time tracing a single patient over a five-year period as she shuttled back and forth between all three major sites of health care—the office, the hospital, and the SNF—ending up in an assisted living facility where she ultimately enrolled in hospice. Rosa Gottlieb’s story illustrates how the many forces that act on the institutions of health care also interact with each other and together shape what happens to patients. I then contrast the experience of the four patients described in Old and Sick in America with ideal geriatric care, and conclude by discussing how we can get from the current reality to where we should be, in light of the forces that conspire to maintain the status quo.

Old and Sick in America depicts the patient’s experience of the health care system through a series of vignettes. The cases presented are based on real patients in whose care I was in some way involved, suitably modified to protect confidentiality. The cases were chosen to be representative: their diagnoses include congestive heart failure, coronary artery disease, stroke, and cancer (the leading causes of death), as well as high blood pressure, elevated cholesterol, dementia, falls, incontinence, and infection (the most widely reported outpatient medical problems). I also selected patients with varying personal characteristics and different family constellations, some men and some women, although capturing the diversity of ethnicities and socioeconomic class in American society with a sample of four was not possible so I made no attempt to do so. It should be apparent that patients’ needs are tremendously variable, even among a group of primarily middle-class individuals with well-educated adult children. If members of this superficially homogenous collection differ in what they need from the health care system, how much more will the entire older population vary in its needs?

It is my hope that Old and Sick in America will open the door to understanding health care as older patients experience it, and that it will also point the way to reforming a great but imperfect system. It is also a very personal story. In addition to the data and the references and the examples I have amassed for this book—and I’ve put additional statistics in the notes for readers who want even greater detail—I have felt free to share my view of what’s good and bad about American health care and how it could be improved. In over thirty years as a practicing geriatrician and palliative care physician, I have developed my own perspective about the health care system. It is that perspective that colors my depiction of what it is like to age and to ail in the United States today, and how we can revamp our deeply flawed approach to caring for older patients. In the end, I hope we will be able to provide outstanding medical care to all geriatric patients, including those who are the most vulnerable and sickest of them all.

Abbreviations in the Text

ACA

Affordable Care Act (full name—the Patient Protection and Affordable Care Act)

ACE unit

Acute Care for the Elderly

ACO

Accountable Care Organization

AHRQ

Agency for Healthcare Research and Quality

AIM

Advanced Illness Management

AMDA

American Medical Directors Association (former name of the Society for Post-Acute and Long-Term Care Medicine)

BBA

Balanced Budget Act

BIDMC

Beth Israel Deaconess Medical Center (Boston)

BWH

Brigham and Women’s Hospital (Boston)

CAHPS

Consumer Assessment of Healthcare Providers and Systems (survey)

CHF

congestive heart failure

CMS

Centers for Medicare and Medicaid Services

CNA

Certified Nursing Assistant

CPR

cardiopulmonary resuscitation

CT

computerized tomography

DNR

do not resuscitate

DRG

diagnosis-related group

EKG

electrocardiogram

EMR

electronic medical record

FDA

Food and Drug Administration

GPO

Group Purchasing Organization

GRACE

Geriatric Resources for Assessment and Care of Elders

HCA

Hospital Corporation of America

HDL

Health Diagnostic Laboratory

HEDIS

Healthcare Effectiveness Data and Information Set

HIPAA

Health Insurance Portability and Accountability Act

ICU

Intensive Care Unit

IMRT

Intensive Modulated Radiation Therapy

MAC

Medicare Administrative Contractor

MedPAC

Medicare Payment Advisory Commission

MGH

Massachusetts General Hospital (Boston)

MRI

magnetic resonance imaging

NIH

National Institutes of Health

NP

nurse practitioner

OBRA

Omnibus Budget Reconciliation Act

OIG

Office of the Inspector General

P&T

Pharmacy and Therapeutics

PA

physician assistant

PAMC

Palo Alto Medical Center

PAMF

Palo Alto Medical Foundation

PET

positron emission tomography

RUG

Resource Utilization Group

RVU

Relative Value Unit

SHEP

Systolic Hypertension in the Elderly Program

SNF

skilled nursing facility

VA

Veterans Administration

Old and Sick in America

Part I

The Office

CHAPTER ONE

Going to the Doctor

Every so often during my years as a primary care geriatrician, a new patient landed in my practice who hadn’t seen a doctor for forty or fifty years. Sometimes, the last direct personal encounter with a physician had been during childbirth. I faced patients like that with a shiver of dread because they usually turned out to have something terrible wrong with them, like the woman who had been healthy all her life, who exercised regularly and ate a good diet, and who came to see me because she’d woken up one day feeling as though she’d been hit by a Mack truck. She might as well have been hit by a truck: she proved to have widely metastatic cancer and would be dead within six weeks. Or there was the 82-year-old woman who had never been sick a day in her life and, according to her, still wasn’t. She was dragged into the office over her vociferous protests by her son and daughter because she went out into the snow wearing sandals and left the teapot burning on the stove long after all the water had evaporated. She had Alzheimer’s disease which had progressed to the point where she could no longer safely live alone. Her judgment, markedly impaired by her dementia, didn’t allow her to grasp her situation. She refused to accept the various creative compromises her family and I devised to provide support for her while allowing her to maintain a measure of autonomy. I thought that if only I had known her for years and been able to establish a relationship with her, I could have chipped away at her denial. She might have trusted me and let me gradually arrange increases in the amount of supervision she had, allowing her to stay at home. Instead, she lost her zest for life after her daughter, at her wit’s end, placed her in a nursing home.

These health care virgins were the exceptions that proved the rule—almost all older people have a long history of