The Informed Patient A Complete Guide to a Hospital Stay
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Copyright © 2017 by Cornell University
All rights reserved. Except for brief quotations in a review, this book, or parts
thereof, must not be reproduced in any form without permission in writing
from the publisher. For information, address Cornell University Press,
Sage House, 512 East State Street, Ithaca, New York 14850.
First published 2017 by Cornell University Press
Printed in the United States of America
Library of Congress Cataloging-in-Publication Data
Names: Friedman, Karen A., author. | Merwin, Sara L., author.
Title: The informed patient : a complete guide to a hospital stay / Karen A.
Friedman, MD, and Sara L. Merwin, MPH.
Description: Ithaca : ILR Press, an imprint of Cornell University Press, 2017. |
Series: The culture and politics of health care work | Includes index.
Identifiers: LCCN 2017016231 (print) | LCCN 2017017264 (ebook) |
ISBN 9781501714061 (pdf) | ISBN 9781501714078 (epub/mobi) |
ISBN 9781501709951 (pbk. : alk. paper)
Subjects: LCSH: Hospital patients—Popular works. | Hospital care—Popular
works. | Patient education—Popular works. | Patient advocacy—Popular
works. | Consumer education—Popular works.
Classification: LCC RA965.6 (ebook) | LCC RA965.6 .F75 2017 (print) |
DDC 362.11—dc23
LC record available at https://lccn.loc.gov/2017016231
Cornell University Press strives to use environmentally responsible suppliers
and materials to the fullest extent possible in the publishing of its books.
Such materials include vegetable-based, low-VOC inks and acid-free papers
that are recycled, totally chlorine-free, or partly composed of nonwood
fibers. For further information, visit our website at cornellpress.cornell.edu.
This book contains information that is intended to help the readers be better
informed consumers of health care. It is presented as general advice on health
care. Always consult your doctor for your individual needs.
Contents
Preface: How It All Began and Why We Wrote This Book xi
Acknowledgmentsxv
1. Why You Need This Book and How to Use This Book 1
Some Statistics 1
Medical Errors and Beyond 2
Why You Need to Be an Advocate or Have an Advocate 2
What You Will Learn 3
Here Is How You Can Use This Book to Best Advantage 4
About Terminology 5
2. The Changing Landscape of Medicine 7
More Changes: Hospitalists versus GPs and Family Doctors
Who Come to the Hospital 8
Rapport and Comfort versus Efficiency and Quality Care 9
Other Primary Care Providers 9
HIPAA10
Health Systems and Hospitals: The Acute or Short-Stay
Hospital and Beyond 11
Linking Your Information: The Electronic Medical Record 14
3. The Emergency Department Experience 16
Why Am I Not Being Seen? I Was Here First 16
Registration and Triage 16
The Workup 18
History Taking in the ER—What Is a History Anyway? 18
Medications and Medication Reconciliation 19
vi Contents
Diagnostic Tests in the ER 23
ER Staff, Consultants, Technicians, and Specialists 26
Treat First, Ask Questions Later 28
Getting Admitted or Going Home 28
Paperwork and More Paperwork 29
Short-Stay Units (SSU) 29
Delays in Getting a Bed 29
4. Getting Settled and Finding Your Way 33
Your Hospital Room 33
Same-Day Admit for Surgery and Other Procedures 34
Unplanned Admissions after Procedures or Outpatient
Surgery35
Your Roommates 35
Navigating the Unit 39
Visitors41
History and Medication Reconciliation Again 42
5. Figuring Out the Care Team 44
The Nurse Is Key—Which One Is the Nurse Anyway? 45
Two “New” Provider Types 49
Types of Hospital Professionals and Staff 51
Getting the Attention of Busy Health Care
Professionals and Staff 57
6. Physicians of All Kinds 58
The Quarterback, or Who’s in Charge? 58
Rounds65
Physician Handoffs 66
Staying in Touch with Your Doctor on the Outside 67
7. Lines, Ports, Drains, Tubes, and Catheters 68
Lines69
Ports73
Drains73
Tubes74
Urinary Catheters 76
Contents vii
8. Tests and Procedures in the Hospital 77
Vital Signs: Temperature, Blood Pressure, Heart Rate, and
Pulse Oximetry 78
Blood Tests (Blood Work) 78
General Imaging Tests 80
Specialty-Specific Tests 82
9. Nutrition in the Hospital 99
NPO100
Speech and Swallow Evaluation for Feeding and
Dysphagia Diet 101
Fluid Restriction 102
Cardiac Diet 102
Low-Fiber Diet 103
Diabetes Diet 104
Vitamin K and Anticoagulants 104
Alternate Feeding Routes 105
Diet in the ICU 107
Nutritional Supplements 107
Bringing in Food for the Patient 108
Feeding the Family 108
10. Protocols and Precautions 110
Hospital Rules 110
Hand Washing 111
GI Prophylaxis 112
Aspiration Prevention 112
DVT or VTE Prophylaxis 113
Prevention of Falls 114
Isolation115
Pain Management Service 117
Lift Equipment 117
Restraints118
Preventing Delirium 118
Pressure Ulcers (Bedsores) 120
Bed Rest versus Mobilization 121
Rapid Responses 123
Codes123
viii Contents
11. Intensive Care Units (ICUs) 124
Monitoring124
Ambiance in the ICU 125
Physical Layout of the ICU 125
Special Medications in the ICU 126
Nutrition in the ICU 126
Visiting Hours 127
Nursing Ratios 127
ICU Protocols 128
Specialized ICUs 130
ICU Organization 136
Stepping Down and Step-Down Units (Intermediate
Care Units) 137
12. Special Patient Populations 138
Oncology138
Patients with Cognitive Loss 141
Drug and Alcohol Abuse 141
Respiratory Care/Ventilated Patients 142
Postsurgical Infections and Complications 143
Stroke Patients/Stroke Unit 143
Psychiatric Patients 143
Your Hospitalized Child 144
Obstetrical (OB) Patients 146
Extended Stays 148
Clinical Trials 149
Advance Directives 150
Ethics Committees 151
The End of Life 152
13. Elective Surgery 154
Evolution of Surgery 154
Minimally Invasive versus Open Surgery 154
Unplanned versus Elective Surgery 155
Planning for Surgery 155
After Surgery 162
Converting from Ambulatory (Outpatient) Surgery
to Admission 166
Contents ix
14. Unplanned Surgery 168
Medical Clearance 168
Typical Unplanned Surgeries 169
Before Unplanned Surgery 170
Service Changes: Who’s in Charge? 173
Your Room 174
After Surgery 175
15. Discharge180
Activities of Daily Living (ADLs) 181
The Process of Discharge Planning 181
Rehabilitation182
Skilled Nursing Facilities 183
Connecting with Your Doctor or Other Health Care
Providers after Discharge 185
Medication (Again!!!!) 185
Goals of Care 186
Monitoring for Warning Signs and Symptoms When
You Are Home 187
16. Some Final Thoughts 188
Showing Appreciation for the Health Care Team, Letters,
Gifts of Food 188
Using the Internet to Get Information about Illnesses 190
Private-Duty Nurses 190
Medical Friends and Family as Resources 191
How You Can Deal with a Medical Error 191
Participate in Your Care! 192
Glossary195
Index219
PREFACE
How It All Began and
Why We Wrote This Book
It began with a shared office—five internist physicians and a research
coordinator sharing a small space in a highly regarded suburban New
York hospital. It was an atmosphere ripe for the exchange of ideas. Karen
(the doctor) and Sara (the researcher) soon became fast friends, the work
in the hospital the common denominator. Karen took care of patients
and trained young doctors, while Sara interacted with research subjects
and the doctors and nurses who took care of them. We talked about the
patients’ illnesses, we discussed the perils of being hospitalized, and when
Sara needed advice about how to help her family members and friends
get good medical treatment, Karen and the hospital-based internists were
right there to answer questions.
An idea was about to be born.
Wouldn’t it be great to give the average person—who didn’t have
access to this kind of advice—the inside scoop on what to expect during
a hospital stay?
Wouldn’t it be ideal to create an inpatient reference book with all kinds
of information, not just medical but practical as well?
Wouldn’t it be wonderful to give patients in the hospital insights about
how to ask the right questions to protect themselves and to get better care?
We were thus inspired to write a book to take some of the mystery and
confusion out of the hospital experience. The book opens the door and
allows the reader an entry into the world of the hospital.
And so this collaboration was started. We talked, we outlined, we
wrote. The months went by (actually years). Karen got promoted, and
xii P reface
Sara changed departments. Still, we talked, we added details, we wrote.
Sara’s mother got sick; advocacy skills were urgently needed. This book
waited. Eventually it got reborn. (Sara’s mother got better.)
The following stories illustrate how different people dealt with
their hospital stays in different ways.
A married couple that we know are both young, highly successful
lawyers. They are at the top of their fields and often quoted in the
media. A few years ago, the husband became quite ill after a routine
office procedure. His symptoms worsened, he was unable to work
or eat, and after several days it was determined that he needed
to be admitted to the hospital to receive IV antibiotics. It turned
out that he had a serious infection, an unusual but not completely
unexpected result of certain kinds of biopsies. After a long and mis-
erable day and a half in the emergency room waiting for a bed, he
was finally admitted to a room. By this point he was not getting
better, and he was extremely uncomfortable with pain, nausea, and
fevers. When we visited him in his hospital room, we saw the state
he was in. This previously strong and healthy person was suffering
and unable to do anything about it—or even to ask for pain relief.
He did not question whether his doctors and nurses were taking the
best possible care of him. To our shock, his wife, an empowered,
extroverted attorney—who in the service of her clients advocates
magnificently—seemed resigned and complacent. She was unable
to do so much as ask the nurse for antinausea medication, let alone
request a consultation with an infectious disease specialist to see
why her husband was not getting better. This is an example of the
mental paralysis that often sets in when we find ourselves confronted
with the unfamiliar world of the hospital.
The second story is about Sara’s youngest son. Harry, at age
thirteen, was diagnosed with ulcerative colitis, an inflammatory dis-
ease, which causes pain and diarrhea. The oral medications pre-
scribed for him seemed to have no effect, and, a small child to begin
with, he continued to lose weight and have high fevers and was
unable to go to school, eat normally, or play. His excellent pediatric
gastroenterologist sensibly wanted to keep him out of the hospital
P reface xiii
but advised us that we would know when we would have to bring
him to the emergency room if it got too bad. Sure enough, that
night arrived, and Harry was brought to the emergency room of the
local children’s hospital, thin, debilitated, and barely able to walk.
He spent the next eight days, including Hanukkah and Christmas,
in the hospital getting intravenous fluids and medications. Here is
where the surprising part comes in. Without any tutoring from his
mother, Sara, who works in a large hospital system, every single
time a nurse brought his medications Harry asked to see what bag
of medication he or she was giving him. Every time a nurse finished
giving him new IV medications, he asked if the intravenous lines had
been flushed. At one point, when a pediatric resident asked Harry
if he wanted ibuprofen for his pain, he told the doctor in training,
“I can’t have ibuprofen because I have ulcerative colitis.” In addition
to advocating for himself effectively, he displayed consideration for
the hospital staff around him. He thanked each and every person
who came into his room—not only the doctors and nurses but also
the woman who brought the lunch tray and the man who emptied
the trash. His assertiveness and his preparedness served him well.
This book reflects so much of what we have learned from our experiences
with patients, with research subjects, with family and friends. We are
excited to share what we know with you, with your caregivers, and, we
hope, with your health care providers.
ACKNOWLEDGMENTS
There are many people we would like to thank for helping to make this
book happen. Suzanne Gordon, our editor, believed in us from the start.
We can never thank her enough for her time, commitment, and support.
Frances Benson, our publisher at Cornell University Press, gave us the
encouragement and praise we needed through the process.
Thank you, Deb Chasman, for pointing us in the right direction; we
are forever grateful.
We thank our hands-on helpers: Alan Fein, MD, intensivist extraor-
dinaire, who guided us about ICUs; Paul Levin, MD, who helped us find
the “person” in surgical patients and provided technical advice; Lorie
Greenberg, MD, who informed our comments on pediatric patients;
Rocio Crabb, who organized us; Matt Rothschild, who made our sen-
tences make sense; Ross Lumpkin, the sensational glossarist. Thanks to
David Rosenberg, MD, MPH, for seating us next to each other in that
famous office and for telling us we should not give up on the book.
Support comes in many forms. We have had many good listeners in
our friends and families. Ted Merwin supplied practical advice gleaned
from his own experience. Our husbands and children cheered us on and
were endlessly patient about the hours we took to accomplish this writing.
Other friends and family members provided material for the vignettes
and gave permission to tell their stories.
Finally we thank our team members: our professional colleagues, our
teachers, our residents, and of course, the patients. We learn from you
every day.
THE INFORMED PATIENT
CHAPTER 1
Why You Need This Book
and How to Use This Book
Why do you need this book? Honestly, it’s because everyone ends up in a
hospital sooner or later and very few of us have the knowledge, skills, and
confidence to ensure the best possible care.
We have written this book in response to our observation that most
individuals do not come into the hospital well prepared with either advo-
cacy skills or an advocate to help them navigate an inpatient stay during
this emotional time. Health care has become ever more complex with in-
creased technology in the age of information. Health care providers are
busier than ever before and are also inundated with changing technology,
rapidly advancing treatments, and a heightened paperwork burden. As a
consequence, more vigilance by the patient is required to remain safe.
SOME STATISTICS
Here are a few figures about hospital stays that may surprise or alarm you:
• There are 34.4 million hospital discharges per year in the United States
alone, not even including the Veterans Health Administration system.
• The average length of stay for hospital visits is 4.8 days.
• Between 210,000 and 400,000 patient deaths a year may be attributed
to preventable medical errors in U.S. hospitals.
• Ninety-nine thousand patients die as a result of hospital-acquired in-
fections each year, according to the Agency for Healthcare, Research
and Quality.
