Make End-of-Life Wishes Known With an Advance Directive

In the movies, doomed heroes and heroines typically have it pretty easy. They either meet with a quick demise or make an emotional exit in the arms of a loved one--no pain, no lingering, and their hair always looks perfect. Though it makes for good drama, the ultratidy farewell is not very realistic. Dying just isn't as neat as filmmakers portray it. But with an advance directive--written instructions for your medical care when you can't speak for yourself--you do have a say in how your life story plays out.

Advance directive is a general term for the legal documents that give direction to your family and physicians about your future medical care. The first document, a living will, states in some detail what care you want provided or withheld if you are not able to express your wishes because of a terminal condition, a life-threatening situation, or a "persistent vegetative state" (commonly referred to as a coma). The second document, a durable power-of-attorney (POA) for health care, asks you to appoint the person who will make medical decisions for you if you are not able to make them yourself.

The living will and health-care POA work hand in hand and, together, give you a say in your treatment even when you aren't able to communicate with others. Without them, you could find yourself at the center of an unpleasant drama of your own, with loved ones speculating about what you would have wanted and physicians having to act within the limits of the law.

One tragic example of what can happen without an advance directive is the prominent case of Terri Schiavo of Florida, whose husband and parents have been locked in a battle over whether or not Schiavo's feeding tube should be removed. Schiavo's husband argues that his wife told him before her hospitalization that, under such circumstances, she would not want to be kept alive artificially. Without documentation to support that claim, Schiavo's parents have succeeded in keeping their daughter on life support. The battle has kept Schiavo and her family in the news, serving as a cautionary tale for anyone who hasn't already written an advance directive.

The difficult truth is that Schiavo may indeed have expressed her desire to die naturally, but, like most Americans, she did not put her wishes in writing. In fact, it's estimated that only 10% to 20% of Americans have put an advance directive in place. And of that small number, many still arrive at the hospital without the documents in hand and with loved ones not knowing where to find them.

If you think you're too young or healthy for this to be a concern, consider that Schiavo was only 26 when she suffered heart failure in 1990. Fourteen years later, she is in limbo, with her loved ones fighting each other over what they believe she would have wanted. This same type of situation could leave you without your wishes fulfilled and leave family members with lingering doubts. An advance directive is something you do for yourself and your loved ones.

Putting your wishes on paper

When is the best time to write an advance directive? Today. Advocates encourage everyone age 18 and older to have an advance directive.

It's possible to prepare an advance directive on your own. Living will and health-care POA documents are available from hospitals (required by federal law) and health-care providers, as well as from many attorneys and a number of Web sites. If you decide to get your forms through the Internet, make sure you get ones that are legally valid in your state, as requirements do vary. And while it is not necessary to have an attorney help you prepare an advance directive, you may want to consult one anyway.

Martin Shenkman, a New Jersey attorney and author of "Living Wills & Health Care Proxies: Assuring That Your End-Of-Life Decisions Are Respected," believes that the public may have been misled by the messages that have come out of the Schiavo case.

"A lot of people got the message that if they just printed out a living will form from the Internet and signed it they would be set," said Shenkman. "The fact is the standard forms don't address a lot of the most important issues people face at the end of life." Plus, Shenkman adds, a living will is not enough--you must have a health-care proxy as well.

Shenkman offers advice from a unique position. As an attorney, he's seen fights between family members arguing over burial arrangements. As the husband of a physician, he has an understanding of the legal constraints and ethical guidelines health-care providers have to operate under.

"This isn't just about pulling the plug," Shenkman says. "You want to tailor your goals and wishes in many areas, which is something you can't do with a standard form."

Two areas where Shenkman sees potential for conflict and doubt are: Medical treatment under special circumstances--Are there special medical requests or restrictions based on religious beliefs, for example, regarding blood transfusion, or pregnancy at the time of incident? Burial arrangements--There can be questions about religious rites, whether to bury or cremate, and the actual location of burial or scattering of ashes, particularly in the case of multiple marriages.

Though preparing a comprehensive advance directive requires more effort than simply printing out a form, the process is not so difficult or time-consuming that you should put it off. For those who want to save time and attorney's fees, Shenkman recommends a visit to his Web site, where you can download a living will form for free and use it as a guide to the various issues you need to address. Shenkman recalls one woman who had prepared so thoroughly before their meeting that they were able to accomplish in 30 minutes what typically takes two to three hours--a very cost-effective approach. Another good resource is at Nolo.com.

Once you complete the forms and have them signed in front of witnesses, get copies into the hands of those who will need them most, namely your health-care proxy (the person you appointed in your health-care POA), doctors, hospital, clergy, and anyone else close to you who would have an interest in your medical treatment. Keep a copy with your will (keep neither document in a safe deposit box) and bring the forms with you any time you are admitted to a hospital. If you want to donate your organs and tissue after you die, you also should add completing a donor card to your to-do list. Keep it with your living will and health-care POA. And, as the U.S. government Web site for organ donation stresses, share your decision to become a donor with your family and caregivers so they know your wishes. Even if you've signed something, your family's consent may be required before donation can take place.

Keep in mind that completing the advance directive paperwork is just half the task. According to the American Bar Association (ABA), studies show that standard advance directive forms do little to influence end-of-life decisions without personal communication about your wishes and values between you and your likely decision makers before a crisis occurs. Hearing the words from your own lips, rather than just reading them on a piece of paper, will do a lot to convince those closest to you that you really do know how you want your life story to end.

Published August 30, 2004