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Posted: April 04, 2005

Practical Caregiving

In Schiavo's Wake, Time to Clearly Record Your Own Wishes

My condolences go out to the family members of Terri Schiavo. I can't imagine how much her husband and her parents have suffered in their own ways during the past 15 years. All of them loved her very much and wanted what they thought was best for her. They just had different opinions of what was best for her.

The one good thing that has come out of this too-public display of grief, sadness, anger and mortality is that it made everyone aware of the importance of a living will -- even when you are young.

I received an email about living wills, referencing Terri Schiavo's situation as a case in point. When you read our exchange, you'll see that another very important document also needs to be signed.

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Dear Jean:

With all the controversy over Terri Schiavo, I've been thinking about my parents and my situation. I am currently taking care of them when they need it. My name is on their house, checking account, savings account and everything else they have, but they haven't signed anything about their medical treatment. They have told me what they want, but it sounds like they need to do something legally.

My sisters argue over everything, and I can see us having the same kind of problems that the family of Terri Schiavo has had. How can I prevent that from happening?
Denise C., Tucson, Arizona

Dear Denise:

When I was taking care of my parents, they hadn't signed any papers directing the doctors about their end-of-life care. When they did have serious medical problems, the doctors did what I told them to do, but the only reason was that I was physically living in the same house as Mom and Dad. If I would have lived in a different family dwelling even five feet away, they would not have followed my directions.

For years Mom and Dad occasionally told us what they wanted, but they didn't write it down. I called a lawyer in a couple of states and was told that if someone can't make their own decisions and they don't have something in writing, things have to be done according to the laws of the state rather than what other family members. (I didn't check about whether a husband or wife can tell the doctors what to do because Mom had Alzheimer's disease and I knew it wouldn't be long before she couldn't make a clear decision.) I was told that the laws vary from state to state.

I finally drove Mom and Dad to a law office and picked up the papers, but they couldn't bring themselves to sign them. Their inability to sign those papers could have brought about disastrous consequences for them -- and me. They might have had breathing tubes and other measures to sustain their life when they really didn't want that.

In your case, after you have the documents signed and legal, tell your sisters about them and give them a copy. They may be upset if you are declared the person who makes the decisions around them, but they should have time to get over it before the documents are needed.

There are two documents your parents should be sign -- a living will and a power of attorney for healthcare decisions. Both documents can be revoked at any time. You can tell someone you want to revoke either one, you can put it in writing, or you can simply tear up the original document. In this instance, to be safe, you might want to gather all the copies and tear them up, and tell everyone who might be asked about it that you want to revoke the advanced directives that you signed.  Healthcare professionals who witness the revocation should document everything in the medical records.

Of course, lawyers recommend that you consult them when drawing up these documents, but you can also do them yourself. There are free forms on the internet (try the National Hospice and Palliative Care Organization), call your local bar association or hospice office, or you can buy the documents at a low cost. Give your doctor a copy, relatives, neighbors and anyone else you think might need one. In some states, both forms need to be notarized or witnessed by two people. Check the laws in your state.

The Living Will

A living will specifies whether a person wants to receive or withhold life support procedures to extend their own life or extend the dying process. It takes effect when a person is unable to make those decisions. To take effect, two doctors must determine that a person is either in a permanent unconscious state or terminally ill.

Some states include nutrition and hydration instructions and some states don't. You can specify exactly what you do or not do, if you are in that situation.

Power of Attorney for Healthcare

The power of attorney for healthcare (also called durable or medical power of attorney for healthcare) is a document in which you say who you want to make medical decisions on your behalf if you are unable to make them yourself.

It goes into effect any time you are unable to make decisions for yourself. Along with the end of life issues, this document can become important when you have surgery with complications, if you suffer a stroke, and virtually any other time you are unable to make or communicate the healthcare decisions that need to be made for you.

This document is much more flexible than a living will. You can specify when the person you name can make those decisions and describe the treatments you, as the patient, do or do not want to receive.

Include the information from a living will in your power of attorney for healthcare. It is a much broader document and covers many more situations. Naming someone to make the decisions for you when you can't is probably one of the most important decisions you will ever make.

The person named does not have a legal obligation to make those decisions, and is not responsible for the financial costs associated with your treatment. To make sure someone is available if you need their assistance, you can name more than one person but only one person can make decisions at any one time.

Many hospitals and clinics ask about advanced directives when you are admitted. They do need to see the documents to verify what you want. Show them both documents, let them make copies, but you keep the originals. Don't ever give those to anyone.

Good luck. Getting the forms is the easy part. Getting your parents to sign them might be a little more difficult, but don't give up. It might save them from receiving the care they don't want.

© 2005 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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Please send me your questions, comments and issues regarding the practical side of caregiving at ASKJEAN@caregivershome.com, and remember to take advantage of our professionals and experts in the Ask an Expert section of our website. You'll find it in the left column on our homepage.

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