Dying Well Prepared: Conversations and Choices: A Guide

By Alan Bingham

Conversations and choices about how to prepare for end-of-life can be difficult because we tend not to discuss such topics readily during our life. However, this is one rite of passage that we shall all face, so it makes sense to understand what our choices may be and how to address them. Everyone over eighteen should read this guide and be prep

• Language: English
• Publisher: Stratton Press
• Release date: Jul 31, 2019
• ISBN: 9781643456805

Alan Bingham

Alan Bingham is a retired hospice and palliative care executive who has spent many hours with patients at the end of their lives. Alan is a graduate of two schools of management with a liberal arts background in philosophy. He spent most of his career in health-care computer systems and ergonomic rehabilitation equipment. He worked with the Kennedy-Kassebaum Bill development, which was the basis of Health Insurance Portability and Accountability Act (HIPAA) and was instrumental in development of electronic medical records and medical billing and accounting as well as clinical systems. He has been a HIPAA compliance officer and is still a long-term care ombudsman in Massachusetts.

Book preview

Dying

Well

Prepared

Conversations and Choices

A Guide

Alan Bingham

DYING WELL PREPARED

Copyright © 2019 Alan Bingham

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by information storage and retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

Stratton Press Publishing,

831 N Tatnall Street Suite M #188,

Wilmington, DE 19801

www.stratton-press.com

1-888-323-7009

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in the work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

ISBN (Paperback): 978-1-64345-435-1

ISBN (Ebook): 978-1-64345-680-5

Printed in the United States of America

Contents

Foreword

Preface

1. Receiving the News

2. Understanding Your Choices

3. Discussing with Family

4. Choosing Where to Live

5. Choosing Your Caregiver

6. Seeing Your Lawyer

7. Who Pays for What?

8. Specifying Advance Directives

9. Managing Pain

10. The Final Phase

11. Reflecting on Your Legacy

Acknowledgments

References

Tools Available to Help You

Foreword

During my work in hospice and palliative care as director of access and admissions, as well as in a marketing role, I have experienced many situations with patients at the end of their lives and with their family and friends. My exposure to nursing homes and senior communities led me to become a volunteer long-term care ombudsman so that I could be an advocate for patients and residents to ensure their needs were accommodated and their rights protected.

During this time, I became aware of serious deficiencies in the understanding of the people I was engaged with as to what was happening, what they could do, and what options and services they had available during end-of-life care. Most of these deficiencies arose from a lack of understanding of end-of-life issues, especially because they are not discussed. I still spend a lot of time sitting and talking to patients and their families about all the issues surrounding end of life.

So I became acutely aware of the taboos surrounding end-of-life discussions and the lack of understanding of the dying process. This then became the genesis of this short guidebook: to help people navigate through this difficult but important and precious time. It is a time when it is essential to get it right the first time because there is no second chance. To this end, I hope this book answers enough questions for you to get it right.

In this second edition, I have updated many sections and added to the general text. I have expanded the caregiving, legal, and advance directives sections, which now reflect new information that have been requested. I have updated the section on financial matters surrounding insurance and reimbursements. I have added a section on medical marijuana.

The book is meant for everyone, not just those who face a short life runway after receiving news of a life limiting illness. We never know when it is our time—it could be a long life or a shorter one, and our final demise may be the result of an acute illness, a chronic one that extends, or an accident. So being prepared is important for this final rite of passage. We will all experience it.

Preface

We all are born and we all will eventually die. In between these two events, there are numerous rites of passage, from baptism to the first day of school, marriage, children, and other age milestones; eventually, though, our lives come to an end. We prepare for these rites of passage and share them with family and friends, except, of course, for death. Death is a taboo topic. Here in the US, we expect that something will be developed that will mean we don’t die—there has to be a pill for that.

If you ask, people usually respond that they would like to die peacefully, at home, surrounded by relatives and friends. This seldom happens. Most people die in hospitals, wired up to electronic machines and surrounded by medical professionals in sterile surroundings. They don’t die peacefully in their homes surrounded by loved ones, but rather surrounded by strangers. Then there are the people living in nursing homes or long-term care facilities.

So the question for you is, how do you want to be treated when you are dying? How can you let everyone know your wishes for your end-of-life care?

All too often, I have seen people anguishing over what treatments and care they should direct for their family members who can no longer articulate what they want. All too often, I have heard the phrase, "I think he would have wanted…" Later, while grieving after the loss of a loved one, I will see the same family anguish over what music to play at the memorial service or what to tell the funeral director regarding the remains. There was never a discussion on these issues, and those left in charge did not get clear verbal instructions to guide them.

Your wishes should be followed, but they can’t if no one knows of them.

This is what I have set out to achieve in this book. It is a guide to the choices you have, the resources available to you, and ways to go about the whole process. Once you have made those choices, it is a guide for you to have conversations with your relatives and friends as well as the medical professionals and your religious support network about who you are and what you want.

The book is divided into sections. You can just look at sections as you desire or read it from cover to cover. There is a personal-action checklist in the appendix for your reference and use.

The book starts at the time the news of your life-limiting condition is shared with you by doctors. It sets the stage and prepares you for the final days of your journey in life to ensure that these precious days are spent the way you want. It looks at the goals of care you want, your options, and who you want to ensure your wishes are carried out.

It helps you prepare for a discussion with family and friends. This family discussion is perhaps the most important discussion you need to have. It is the conversation few people want to have, the one most often avoided, and perhaps the most difficult of all conversations. However, armed with the information in the following pages, you should be better placed to think through this discussion and what you want. The information is intended for you to use as you see appropriate because everyone has different circumstances, the discussion involves other people, and there are many variables and nuances. Take what follows and use it to shape your thoughts on your end-of-life care. Sharing your thoughts alleviates much of the anguish for those charged with the responsibility of making the decisions. Importantly, while relieving them of a huge burden, it also means that your wishes, what you wanted, are likely to be invoked. Have the discussion and share with everyone that will have a voice in your decision. Lastly, write it all down and give them copies.

The section on caregivers is an important read. These are the folks who will be looking after you as you progress into a state where you cannot exist without them. They will be providing care for you up to your final moments, and perhaps beyond. Ensuring that they are set up, competent, and have everything they need to enable them to care for you and not suffer burnout is important. There is much to say about caregivers; they are the angels who do care and perform a difficult, stressful, tiring, and sometimes quite thankless duty. They do it out of love, and those that do it for a career do it for the calling because they certainly do not do it for the money.

There is a legal section, but this is written with the caveat that I am not a lawyer and it is based on my lay understanding of legal requirements in Massachusetts. Laws change from state to state, so some of it may not be relevant to you. Not being a lawyer, I would strongly recommend you consult an elder law attorney (one who specializes in elder law) for any legal questions you have. While not everyone facing a life-limiting diagnosis is elderly, elder law attorneys are well versed in the intricacies of end-of-life issues. If you cannot identify one from the Internet or the yellow pages, maybe your local elder services or Council on Aging can offer some assistance.

There is also a financial section covering who pays for what. Like laws, this information changes from state to state and over time, so I have based the information on the programs available in Massachusetts. My intent is to help you know what questions to ask.

Medication at the end of life to manage pain is a scientific art form that is practiced by specialist clinicians who can make this journey as comfortable as can be hoped. Having worked with palliative care and hospice physicians, I can attest that in my experience, they have an excellent understanding of which medications to use, in what dose, and with what frequency. They know the half-life of the pain meds as well as any contraindications and can identify reactions. Both the medication and the legal sections have been described by me and are not intended as either medical or legal advice but simply as a guide for you to discuss with your professional clinicians and attorneys. They are the experts; my mission is to provide the appropriate questions for you to ask the experts to ensure that this precious time is best spent.

There is a brief section on ethics and ethical issues because an understanding of what ethical issues the health-care profession faces, where they converge with legal constraints, and the gaps in lay knowledge as to what is expected are important. There are also some techniques I have used to resolve ethical issues, which you may find useful. These come from earlier studies of ethics at university as well as from mandatory ethics courses from my employers in health care and from the Commonwealth of Massachusetts.

Finally, there is the section on the dying process and what happens after death. Every person, and their end-of-life experience, is different. Each patient will have a collage of different diseases, with differing severity and symptoms. Everything is presented based on my knowledge, experience, and understanding. It’s complicated.

Everything cannot be covered in such a short work; however, being concise and triggering the thought process through a structure can be helpful to most people at this difficult time. It is a time when people begin to live again, when the value of every day becomes important, and when we can set things right. That is the intent of the work.

1.

Receiving the News

Generally, the news that a person is nearing the end of their life is broken to them by a physician who has diagnosed a serious medical problem. But when it comes to breaking bad news, even the best doctors often fail to impart this information as well as they’d like. Doctors are trained to save lives and fix problems; they don’t want to say that they can’t fix something, and no one wants to be the one to deliver bad news. Yet the reality is that they can’t fix end-of-life issues because dying is the final act of living. The physician is often accompanied by someone, such as a social worker or nurse.

Despite the best efforts of physicians to say what they know and describe the available options, the message is often confusing and unclear. They may use clinical terms you might not fully understand, let alone be able to appreciate the consequences of those terms. Sometimes they inject hope for a miracle, a cure, or a bounce back into the conversation. This injection of hope has two aspects: firstly, it is a way of them saying that there is a (small) chance something could happen that would act as a remedy of some sort, and secondly, it is a way of them making the task of delivering the news easier on everyone.

However, false hopes can be detrimental because they can change the goals and activity plans you might set. In such cases, this may lead to a delay in doing things you really want to do in this special and limited time, or even not getting to do those things at all. It can also lead to more treatment plans, which may be futile, increase discomfort, deny you the opportunity to share time with family and friends, and potentially even hasten death rather than prolong life.

There is also the clarity of the message. Is the message delivered from the giver to the receiver actually received the way the giver intended and hoped? Did the receiver of the message really understand and receive the essential essence of the message the way the giver intended it to be understood? Often the message is interpreted into something different from what was intended because of personal bias or cultural differences. We all know that messages can become progressively diluted the more they are passed from person to person, and we know that we tend to hear what we want to hear. End-of-life messages are often delivered with nuances that can obfuscate, and the assumption that what is being said is what is being actually heard and processed by the patient can be problematic.

Clarity of message is critical when you are confronted with the news that you have a terminal condition and are nearing the end of your life. You will likely be in a state of shock. Many things may immediately rampage through your mind. After the first announcement of the news, disbelief may set in—you may react that This can’t be happening to me and block subsequent information.

In this first discussion, when the physician breaks the bad news, he or she will generally share the care options available. But at this point in time, you are probably also thinking of the things you want to do, things you will miss, people you want to meet with, and what will be left undone. Why is this happening to me? Is there a miracle out there? What is the physician really saying? What will happen to me? With thoughts such as these, it is understandable that you may miss altogether some part of the message or grasp only a part of it—such as the slim hope for a miracle cure at the last moment. That would be something you would hope to hear. Maybe you will be the one of the 5 percent who will beat this thing?

Generally, the bit of information grasped is