Horizons in Hemophilia, Spring 2009
By Cathy Hulbert, LCSW, Social Worker
Hemophilia of Georgia's Healthy Aging Committee has been talking about how to share a wonderful form called Five Wishes® with our clients across the state. It is a legally binding advanced directive form that adults age 18 and over can fill out if they want to have more input about treatment during the last days of life.
I call it "wonderful" because it was developed with a person's medical, emotional and spiritual needs in mind. Its primary author, a lawyer named Jim Towey, worked closely with Mother Teresa of Calcutta for 12 years and was influenced by her emphasis on death with dignity. For a legal document, it is unusually easy to read and understand.
But along with HoG's other social workers and nurses, I realize that discussing our own mortality is not an easy subject to tackle. In addition, our culture's taboo on talking about death makes it even harder to make choices about such things as life-support and the way you want to be comforted by family and friends if you can't speak for yourself.
I learned just how hard this can be when I made a commitment to fill out a Five Wishes® form for myself. I'm a social worker and my training gives me an extra awareness about such things as avoidance and resistance. And yet, there were mine, in plain view. Somehow, I kept putting it off and "forgetting" that I truly wanted to have a completed copy in the hands of my loved ones should something happen to me. Like a medical alert bracelet, it will speak for me if I am unable to speak for myself. But it is one of the toughest subjects in the world to speak about.
Despite some serious stalling, I can honestly say that I was very relieved when my Five Wishes® form was complete. This experience seems worth sharing because mixed feelings are normal. The subject is unsettling, but advanced directives are a way of taking charge in a world where few things really are in our control. Like a medical alert bracelet, this valuable resource includes a wallet card that directs medical staff to the person you have designated as your healthcare agent.
Once it is signed and witnessed according to instructions, it is legally binding should you become so sick or injured that you can't express your wishes.
However, it never hurts to hire a lawyer specializing in these issues to discuss topics related to your care. The laws about nursing home funding and financial assets are extremely complex. An experienced lawyer can help you navigate them.
HoG nurses and social workers are open to helping you create an advanced directives plan for yourself. To get started, you can order Five Wishes® forms online. The cost is low, but you can contact your social worker if you can't afford it. HoG has ordered some of these forms in English and Spanish.
So, what exactly are the five wishes covered by this particular form?
Wish One: The person I want to make care decisions for me when I can't.
Wish Two: The kind of medical treatment that I want or don't want.
Wish Three: How comfortable I want to be.
Wish Four: How I want people to treat me.
Wish Five: What I want loved ones to know.
For wish number two, it is important to discuss with your primary doctor or an involved specialist the "when" and "how" an advanced directive form would go into effect. Remember, it will only be used by your health care agent and doctors under certain circumstances, such as a brain injury that leaves you unable to speak or a period in which you are in a coma. Without it, loved ones are left guessing and doctors must make decisions that you might seriously disagree with.
The wishes that address other areas of life give you a chance to spell out which prayers, music, literature or poetry might be calming to you if you are in a highly fragile state. Or, if you want none of these things, that's important to note, too. The important thing is that you have written the directions for what could possibly be the last days of your life. Few things in life give us a chance to be that much in control.
Five Wishes® is a trademark of Aging with Dignity. All rights reserved. © 2007 Aging with Dignity. PO Box 1661, Tallahassee, Florida 32302-1661