Asking the Right Questions to Get the Health Care You Need

By James Cappleman LCSW

Families experiencing the stress of a chronic or serious illness typically find themselves forced to make many life-altering decisions, and often with little time to contemplate the best course of action. This book serves as a practical guide to help what all of us will one day experience when we find ourselves sorting through the complex maze of obtaining good health care. Unlike other books written by doctors, nurses, and chaplains, this book comes from the perspective of a social worker who knows first hand the struggles families experience with obtaining the right information so that good decisions can be made.

Written with the idea in mind that the reader may be experiencing an exorbitant amount of stress, the book is laid out in direct, straightforward, and easy language to help with the following:

good communication with the health care team establishment of goals for care and getting everyone on board the different ways to ensure you're heard when you can't speak for yourself what to do (and not to do) during a hospitalization the secrets to selecting a good nursing home what to do when someone refuses to go to a nursinghome choices available when a situation becomes terminal how to help prevent a financial crisis during a health crisis ways to get needed medications when you can't afford it

This is a book that all of us will need someday if not now.

• Language: English
• Publisher: Trafford Publishing
• Release date: Mar 27, 2008
• ISBN: 9781466957428

James Cappleman LCSW

James Cappleman is a licensed clinical social worker who has worked with thousands of families experiencing a serious or chronic illness of a loved one. He came up with the idea of writing this book when he kept hearing from families over and over again that they didn't know what questions to ask their doctor when they were just told some unexpected news. On many occasions, he witnessed people struggling with choices because they didn't have the right information to guide them along. Very little has been written from the perspective of a social worker, but it is from this perspective that many families need help so that they can make the right choices about medical decisions, hospital care, nursing homes, rehabilitation, advanced directives, and affording needed medications. Mr. Cappleman remains both a health care activist and a community activist in his neighborhood of Uptown, located in Chicago, IL. His work at the University of Chicago Medical Center also includes the training of doctors and nurses in the role of family-centered care.

Book preview

Asking the Right

Questions

to Get the Health

Care You Need

James Cappleman, LCSW

This book isn’t really just about living with an illness. It’s about living life to its fullest when you have an illness.

And for that, I dedicate this book to Harry, our black lab,who served as a reminder of the joy in living each day to its fullest during his life.

Designed by Nicole Guzzo.

Order this book online at www.trafford.com/07-2293 or email [e-mail]

Most Trafford titles are also available at major online book retailers. © Copyright 2008 James Cappleman.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the written prior permission of the author.

Because information about health care and health care resources are complex and are constantly changing, this book will make an occasional reference to various products or websites. To the author’s knowledge, the author has no connection to any of the named products or websites mentioned. Further, the mention of a product or a website does not constitute an endorsement by the author or the publisher.

This book is intended to provide helpful information and should not be considered as a substitute for advice from legal council or a medical professional. The author and publisher explicitly disclaim responsibility for any adverse effects arising from the use or application of the information contained in this book.

Note for Librarians: A cataloguing record for this book is available from Library and Archives Canada at www.collectionscanada.ca/amicus/index-e.html

ISBN: 978-1-4669-5742-8 (ebook)

ISBN: 978-1-4251-5223-9

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Contents

ACKNOWLEDGMENTS

INTRODUCTION      Learning to Ask the Right Questions

1      Enhancing Your Relationship With The Health Care Team

2       The Detailsof Your Medical Condition

3       PlanningAhead

4       Hospitalization

5       Nursing Care Facilities

6       When a Situation Is Terminal

7       Finances During a Health Care Crisis

8       Your Health Care Coverage

9      Future Trends in Health Care

ACKNOWLEDGMENTS

A huge and special thanks to Judy Provo, Jim Bussen, Irene Farkas-Conn, Fran Hammon LCSW, Maureen Finnegan RN, Maureen Kilfoil RD, LDN, CNSD, Georgia Bockos, Nicole Guzzo, Jack Rinella, and the numerous medical professionals and others who have helped with the editing of this book. Their insights and help were enormous and very much appreciated.

Many thanks to my brother George Cappleman who encouraged me, pestered me, and motivated me to get this book completed. I also thank my other siblings Bill, Nancy, Joan, Garry, John, and Judy who have all pushed the health care industry to advocate for their loved ones. Thanks to Fran and the late Ace Thale, who both cheered me on and to Richard Thale for his patience and support from the beginning to the end of this book.

INTRODUCTION

Learning

to Ask the

Right Questions

Over and over again, families in crisis have said to me…

If only we knew what type of questions to ask! We see the doctor for such a brief period of time and before we know it, the doctor is gone and our questions aren’t answered.

"What do you mean she ‘s being discharged from the hospital…

she’s still too sick!"

The doctor is asking me if I want the surgery! I’m not a doctor… why am I being asked about what I should do?

I was told that I couldn’t apply for Social Security disability because I’m not poor enough. How am I supposed to meet these medical expenses?

Just like our taxes, getting through the complicated maze of addressing our health problems can be a daunting task. The purpose of this book is to give you needed information to make an informed decision related to your health or the health of someone you love. No book can possibly contain all the answers, so when more answers are needed, this book can point you in the right direction to get the information.

About a third of all people living with a chronic illness will experience severe financial difficulty because of health-related problems. For some individuals, the financial crisis occurred because they simply did not know when to file for disability with their workplace or with Social Security. This book will give you direction on when to file for disability so that the stress about your finances do not distract you from addressing your health care needs.

WHAT IF THE PERSON WITH THE MEDICAL CRISIS IS A CHILD?

This book is not geared for problems faced by parents of children with a chronic or life-threatening medical condition. Medical care for minors, while vastly similar, is still too different from the health care of adults for two reasons:

1.   There is often a more predicable trajectory of illness for an adult.

2.   Children are not little adults and they react to a chronic illness very differently from adults.

1

Enhancing

Your Relationship

With The Health

Care Team

Communicating with Your Doctor

The reality is that the demands on doctors mean that you may literally have only a few minutes to spend with them, so it is important that you make the very best use of the time you do have. Because it can be anxiety provoking, it is not uncommon for many people to have their minds go blank when the doctor walks into the room.

When people are experiencing stress, some studies indicate that they hear about 10% of what is said. That is certainly the case when it comes to listening to information about your own health. I can still vividly recall when a loved one experienced a terrible car accident and the doctor at the hospital was explaining to me the details of his injuries. I remember seeing the doctor’s lips move but I was not able to hear what was said. I was still in a state of shock.

One way of dealing with this natural reaction is to bring a pad of paper and a pen with you so that you can write down some of your questions as well as some of the answers given by the medical team. If this visit occurs while you are in a hospital, have someone take notes for you. With the stress of a hospital stay, this will help you remember what has been said.

It is also often helpful to get the detailed answers to your concerns by breaking down your questions into four categories: questions about your medical condition, questions about tests and procedures, questions about medicines and questions to ask if you are currently hospitalized.

Some questions to include about your medical condition:

What is the nature of the problem?

What type of recovery could I expect?

How long will recovery take?

When could I expect to resume my normal activities? Some questions to include about medical tests or procedures:

What is involved with a particular medical test or procedure?

Does the test or procedure require a hospitalization or can it be done on an outpatient basis? How urgent is the test or procedure? When can I expect my test results? Do I get my test results while I am in the hospital? Do I receive my test results face-to-face or through a phone call? (Some people figure out fairly quickly that if they are asked to come in for the test results, the news is bad. Their anxiety skyrockets while waiting for their appointment to see their doctor. To ease