The Caregiver's Path to Compassionate Decision Making

Making Choices for Those Who Can't

Viki Kind

• Publisher: Education and Mediation, inc.
• Year: 2018
• ISBN:
  9780692122853
• Edition: 2
• Topic: Medicine
• Subtopic: Caregiving

This award-winning book guides families and professionals who are making decisions for those with varying degrees of mental capacity. (New 2nd edition includes 40 bonus pages from The Caregiver’s Path Workbook.) Viki adaptable system for making choices comes as much from her heart as from her extensive experience as a bioethicist. KindEthics.com

About the book:

You know how difficult—even heartbreaking—it can be to make decisions for someone with dementia, stroke, Parkinson’s, developmental disability, mental illness, or other brain injury. Feeling confident that you’ve made the right decision would be a welcome relief from the worry and guilt you may be feeling.

The Caregiver’s Path is an invaluable resource for caregivers struggling to make the right decisions, whether it’s taking away the car keys, moving to a long-term care facility or making the difficult medical and end-of-life choices.

Readers will learn the framework and tools to create a good, ethical decision. These tools will help give voice to those who can’t speak for themselves.The book provides specific strategies and questions to use along the decision making pathway.Respect and compassion are the core values of this decision making process.

This is not a one-size-fits-all solution but can be adapted depending on the individual’s level of incapacity and the situation. Throughout the book are personal and real-life stories to help illustrate these tools. At the end of the book, Viki gives expanded end-of-life guidance for making the most difficult decisions.

Recommended by:

Booklist

Journal of Hospital Librarianship.

Journal of Gerontological Social Work

Alzheimer’s Association

NAMI Advocate - National Alliance on Mental Illness

Christopher and Dana Reeve Foundation Paralysis Resource Center

Muscular Dystrophy Association

McKnight’s Long Term Care News

Dementia Australia

Well Spouse Association

Pain Management Nursing Journal

Journal of the Catholic Health Association of the United States

Employee Assistance Report

Southern California Physician Magazine

Appendix 1

Toolkit for Documenting Your End-of-Life Wishes

Section from The Caregiver’s Path Resource Workbook: Articles, Worksheets and a Visual Conversation Toolkit

By Viki Kind, MA, www.KindEthics.com

Illustrations by Annette Hassell, www.AnnetteHassell.com

Order Viki’s new Workbook through KindEthics.com or contact Viki directly at [email protected]

An Insider’s Guide to Filling Out Your Advance Directive

Quick Tips for Filling Out Your Advance Directive

Viki’s Quality-of-Life Statement

Template to Use to Complete Your Own Quality-of-Life Statement

Guidance for My Decision Maker(s)

What do I want the doctors to know about honoring my religious/cultural beliefs both while I am sick and/or dying?

An Insider’s Guide to Filling Out Your Advance Healthcare Directive

What is an Advance Directive for Healthcare Decisions? The Advance Directive is a form that a person can complete while she still has the capacity to think and communicate. This form can be used to indicate who should make the patient’s decisions and what the patient would want in different medical situations after the patient loses capacity. Each state has a different form to use, so be sure to get the correct form before you start using this guide.

Most doctors just hand patients the Advance Directive form and tell them to fill it out. But they don’t help explain how to use the form or what the decisions mean. I am going to help you think through the process of filling out your Advance Directive. There are two main decisions you need to make when you are filling out your Advance Directive: who you want to make decisions for you and what you would want. After I help you with these two questions, I will tell you what to do once you have filled out this form. At the end, I have included instructions on how to find a form that would work where you live.

Whom Should You Pick?

Let’s first talk about whom you would want to make decisions for you. In your state, your form might ask you to list your agent, proxy, durable power of attorney for healthcare or surrogate decision maker. (These words all mean the same thing, but different places use different legal terms.) Use the following points to help you make a decision.

•You should pick someone who is medically literate. What does this mean? The person should be able to understand what the doctor is saying, be able to understand the medical words and be able to understand the medical choices being offered. If the person you thought you were going to pick would be confused by what the doctor would say, then pick someone else.

•You should pick someone who knows you very well, would know what you would want in a medical crisis and would tell the doctor what you have told her in the past. The person you choose will be asked to listen to medical information and then to use your values to make medical decisions. The decision maker is not supposed to use her own values, but to speak as if she were you. If the person you thought you would pick wouldn’t respect your choices or has very different beliefs from yours, then pick someone else. You want someone who will speak as if she is speaking with your voice and values, not her own agenda.

•You should pick someone who won’t fall apart in a crisis. It doesn’t do you any good if the person is hysterical, can’t function or can’t stand to visit you in the hospital. You need to pick someone brave enough to be by your side no matter how difficult things get. If the person you thought you would pick doesn’t handle her own life very well, then don’t have her be in charge of yours.

•You should pick someone who will do right by you even if it is the most difficult thing she has ever had to do. Sometimes doing the right thing is allowing the person you love to have a peaceful death. Your decision maker needs to be able to live with the difficult decisions she has to make. In reality, she is making the decisions based on what you would want, not what she would want, but that doesn’t necessarily make it any easier. You have to be able to talk to this person ahead of time about what you would want in different kinds of situations. So if the person you thought you would pick is too afraid to talk about death and dying, then she isn’t the right person for this job. Or if she would refuse to follow through with what you have requested, then pick someone else.

•If you can, pick someone who lives close by or can at least afford to hop on a bus or plane and come to the hospital to talk to the doctor in person. Too often bad decisions get made because people can’t understand that their loved one’s condition has changed drastically and that the person is no longer as they remember. If the decision maker can’t come right away, perhaps a webcam can be used or a picture can be sent to show what has happened to you.

•You can also write down the names of those you don’t want to be involved in the decision making. The rules regarding who is in charge of you when you are unconscious or incapacitated vary from state to state. You need to protect yourself and choose the person who is right for you.

•Doctors won’t tell you this, but you can pick two or three people to share in your medical decision making. But be careful that you pick people who can work together, who will support each other and who you know won’t make things worse for the healthcare team. I had one lady tell me that she picked her two sons to make her decisions and that these two men had never agreed on anything. She is setting herself up for a nightmare, as good decisions won’t get made and the doctor will hate having to deal with her sons. You don’t want your doctor to hate your decision maker. Please pick carefully.

•Some people don’t pick their spouse, significant other or partner because they know that it would be too much for this person to go through emotionally and that she couldn’t make the most difficult decisions. If you do pick your spouse, then you need to be extremely careful about picking alternate decision makers. The alternates will make your decisions if you and your spouse are injured in the same accident. The alternates should be just as qualified as your first choice.

•The other part of the “who” question is, “Whom do you want to be able to receive information about your health?” Because of our HIPAA (patient confidentiality) laws, you now have to state who can and cannot receive your personal information. Unfortunately, the Advance Directive form doesn’t ask this question. I would suggest that you write your choices in the “Other” section of whatever form you are using. Make sure you indicate both those you do want to receive your medical information and those you do not want to receive your medical information. Next, let’s look at how to tell the doctor what you would want, if you were unable to speak for yourself.

What Would You Want?

The first thing to remember is that this form goes into effect when you are unconscious, too mentally disabled or too sedated to speak for yourself. This form will be used when you are injured, sick and/or dying. Too many people, including doctors, think of this form as only a dying form. For some people, this form will be used for years and years because they have become cognitively impaired.

The next thing to decide is what you would want in certain medical situations. Should you be specific or vague about the specific medical treatments you would want? I would encourage you to be vague. You won’t know the exact medical situation you might find yourself in, and you may guess wrong if you write down “Don’t do this” or “Yes, do that.”

Here is an example: You might have written on your Advance Directive that you would never want to be put on a ventilator. How will this statement be interpreted by the doctors? The doctor will not put you on the ventilator. If he does, it would be considered assault and battery because it is against your will. I was recently consulted about a medical dilemma with an elderly gentleman. The gentleman had written that he didn’t want to be hooked up to a ventilator, but what he meant was, he didn’t want to live long term on a ventilator. This became a problem when he needed to be hooked up to a ventilator for four days in order to recover from a serious infection. He didn’t need it forever—just for a few short days. But because he was too specific and had said to not put him on a ventilator, he was not put on mechanical support and he died. So be careful when you request certain medical choices. Check with your doctor to make sure that what you have written would work in different medical situations.

So, now that I just scared you, you are probably worried about what to write in this section. I have a solution. It is called a meaningful recovery statement or quality-of-life statement. You need to explain to the doctor what kind of life you woul...