Informed Patient , livre ebook

THE INFORMED PATIENT
A COMPLETE GUIDE TO A HOSPITAL STAY
Karen A. Friedman, MD, and Sara L. Merwin, MPH
ILR Press an imprint of Cornell University Press Ithaca and London
Contents Preface: How It All Began and Why We Wrote This Book Acknowledgments 1. Why You Need This Book and How to Use This Book Some Statistics Medical Errors and Beyond Why You Need to Be an Advocate or Have an Advocate What You Will Learn Here Is How You Can Use This Book to Best Advantage About Terminology 2. The Changing Landscape of Medicine More Changes: Hospitalists versus GPs and Family Doctors Who Come to the Hospital Rapport and Comfort versus Efficiency and Quality Care Other Primary Care Providers HIPAA Health Systems and Hospitals: The Acute or Short-Stay Hospital and Beyond Linking Your Information: The Electronic Medical Record 3. The Emergency Department Experience Why Am I Not Being Seen? I Was Here First Registration and Triage The Workup History Taking in the ER—What Is a History Anyway? Medications and Medication Reconciliation Diagnostic Tests in the ER ER Staff, Consultants, Technicians, and Specialists Treat First, Ask Questions Later Getting Admitted or Going Home Paperwork and More Paperwork Short-Stay Units (SSU) Delays in Getting a Bed 4. Getting Settled and Finding Your Way Your Hospital Room Same-Day Admit for Surgery and Other Procedures Unplanned Admissions after Procedures or Outpatient Surgery Your Roommates Navigating the Unit Visitors History and Medication Reconciliation Again 5. Figuring Out the Care Team The Nurse Is Key—Which One Is the Nurse Anyway? Two “New” Provider Types Types of Hospital Professionals and Staff Getting the Attention of Busy Health Care Professionals and Staff 6. Physicians of All Kinds The Quarterback, or Who’s in Charge? Rounds Physician Handoffs Staying in Touch with Your Doctor on the Outside 7. Lines, Ports, Drains, Tubes, and Catheters Lines Ports Drains Tubes Urinary Catheters 8. Tests and Procedures in the Hospital Vital Signs: Temperature, Blood Pressure, Heart Rate, and Pulse Oximetry Blood Tests (Blood Work) General Imaging Tests Specialty-Specific Tests 9. Nutrition in the Hospital NPO Speech and Swallow Evaluation for Feeding and Dysphagia Diet Fluid Restriction Cardiac Diet Low-Fiber Diet Diabetes Diet Vitamin K and Anticoagulants Alternate Feeding Routes Diet in the ICU Nutritional Supplements Bringing in Food for the Patient Feeding the Family 10. Protocols and Precautions Hospital Rules Hand Washing GI Prophylaxis Aspiration Prevention DVT or VTE Prophylaxis Prevention of Falls Isolation Pain Management Service Lift Equipment Restraints Preventing Delirium Pressure Ulcers (Bedsores) Bed Rest versus Mobilization Rapid Responses Codes 11. Intensive Care Units (ICUs) Monitoring Ambiance in the ICU Physical Layout of the ICU Special Medications in the ICU Nutrition in the ICU Visiting Hours Nursing Ratios ICU Protocols Specialized ICUs ICU Organization Stepping Down and Step-Down Units (Intermediate Care Units) 12. Special Patient Populations Oncology Patients with Cognitive Loss Drug and Alcohol Abuse Respiratory Care/Ventilated Patients Postsurgical Infections and Complications Stroke Patients/Stroke Unit Psychiatric Patients Your Hospitalized Child Obstetrical (OB) Patients Extended Stays Clinical Trials Advance Directives Ethics Committees The End of Life 13. Elective Surgery Evolution of Surgery Minimally Invasive versus Open Surgery Unplanned versus Elective Surgery Planning for Surgery After Surgery Converting from Ambulatory (Outpatient) Surgery to Admission 14. Unplanned Surgery Medical Clearance Typical Unplanned Surgeries Before Unplanned Surgery Service Changes: Who’s in Charge? Your Room After Surgery 15. Discharge Activities of Daily Living (ADLs) The Process of Discharge Planning Rehabilitation Skilled Nursing Facilities Connecting with Your Doctor or Other Health Care Providers after Discharge Medication (Again!!!!) Goals of Care Monitoring for Warning Signs and Symptoms When You Are Home 16. Some Final Thoughts Showing Appreciation for the Health Care Team, Letters, Gifts of Food Using the Internet to Get Information about Illnesses Private-Duty Nurses Medical Friends and Family as Resources How You Can Deal with a Medical Error Participate in Your Care! Glossary Index
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 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 miserable 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 disease, which causes pain and diarrhea. The oral medications prescribed 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 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 u