Guide to Other Chapters:  
Table of Contents
Introduction
1: What Is Duchenne MD?
2: Getting the Diagnosis
3: Sorting Out The White Coats
4: Your Child's Physical Needs
5: The Future—Research Points the Way
6: Your Child's Emotional Needs
7: Your Child's Education and Future
8: The Family
9: When You Need Help
10: Saying Good-Bye

General MDA Resources >
 
Chapter 10: Saying Good-Bye
In Chapter 10:
photo: wheeling down the road
Preface to Chapter 10 | Medical Decisions | Last Wishes | Hospice  
Legal and Financial Issues | Saying Good-Bye | The Grief Process 
Siblings | Memorials | General MDA Resources 

MEDICAL DECISIONS

"My life is good. There have been moments in this hospitalization when I thought I might want to die, but I knew that if I said I wanted to die, I would. . .. When I am ready, I'll tell you and I'll mean it!"

--15-year-old with cystic fibrosis talking with his parents (Children's Hospital by Peggy Anderson)

Because of the nature of DMD, there's usually time for family members to discuss late-stage medical treatment options ahead of time. By all means, honor your son's wishes, especially if he's an adult. Even if he's younger, he should be entitled to some say.

Some of the choices you may face during the later stages of his disease are: whether and what kind of assisted ventilation to use; whether to have a tracheostomy; whether to resuscitate him after cardiac arrest, which may occur as a result of a weakened heart or respiratory system; whether to receive nourishment by gastrostomy tube; and whether to continue respiratory support if he becomes comatose.

It's very difficult to make these decisions during a crisis, when medical personnel are pressuring you for an immediate choice. If at all possible, a family discussion will help you prepare for the time when these decisions must be made. Ask the doctors you deal with to explain the options that may be presented and the consequences of various choices.

Your son may have preferences about dying at home, in a hospice or in a hospital. If possible, discuss with your physician and/or hospice nurse how care will be provided in each of these settings before it's time to decide.

Your son may choose to make his wishes formal in a living will and a durable power of attorney.

A living will or medical directive is a document that specifies exactly what types of advanced medical intervention a person doesn't want, should a medical emergency arise. Having it in place often eases the uncertainties of a person with DMD about suffering unwanted medical intrusions. Once a living will is signed, it can always be changed, if the signer so wishes.

A durable power of attorney confers on someone, usually a parent in the case of DMD, the legal power to make such medical decisions in the event the patient becomes unable to communicate his wishes. Both these documents are available at most hospitals. They're also available through your attorney and in the reference sections of many public libraries.

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