Advance directives express your wishes when you can't

January 29, 2009

Communicating your healthcare wishes before they become an issue is probably one of the most important discussions you should have. Consider what would happen if you had an illness you couldn’t survive, or an injury that left you permanently unconscious. How much medical intervention would you want to prolong your life? What quality of life would you want for your remaining time? Who would make or communicate your decisions if you couldn’t?

Advance directives are spoken or written forms that help outline the care you want when you can’t communicate your wishes. They’re designed to allow you to make your medical care choices known; help your family make medical decisions on your behalf if necessary; and provide care guidelines for your physicians. Your advance directives may indicate whether or not you want CPR, artificial respiration or artificial nutrition or hydration (such as a feeding tube). They also allow you to appoint a health care representative — someone you’ve authorized, in writing, to make healthcare decisions on your behalf. This person only acts if you’re unable to make or communicate care decisions. While advance directives can help, for most people they don’t go far enough, says Cynthia Kociszewski, APRN, Ph.D., an advanced practice registered nurse and director of The Hospital of Central Connecticut’s Wolfson Palliative Care Program. This program provides a consult service that helps with the ongoing care needs of patients with chronic and life-threatening illnesses.

Advance directives are usually implemented when a physician deems your condition terminal. But patients and loved ones might have different definitions of “terminal,” Kociszewski says. She’s worked with patients who have numerous, serious physical ailments. Many feel “healthy” as long as their minds are sharp, and would want aggressive life supportive therapies regardless of what their advance directives state. Other patients will refuse IV fluids, or even temporary, supplemental oxygen. They feel if their bodies can’t function on their own, they should die a “natural death” without medical intervention. These situations illustrate why it’s critical to choose a health care representative who understands your health care wishes and is able to honor them if necessary. Kociszewski also recommends consulting your primary care physician about your advance directives. Your physician can tell you, based on your medical condition and history, the types of situations you’re most likely to face and possible medical interventions and outcomes. When talking with your physician, health care representative and loved ones,“the discussion shouldn’t be about how you want to die, but how you want to live,”Kociszewski says. “When I’m talking with patients and family members about palliative care, it’s important for me to find out about the life of the patient. That says so much about how they want to live their life in the presence of whatever illness they are facing.”

So how do you discuss a subject most people don’t even want to think about? A number of organizations and Web sites can help:

• The National Hospice and Palliative Care Organization’s Caring Connections site, www.caringinfo.org, offers information about advance directives — how to discuss the subject with loved ones and complete advance directives.
• The American Bar Association Commission on Law and Aging, www.abanet.org/aging/toolkit/, offers a toolkit with a detailed questionnaire to help you choose a health care agent and specific questions about care you want to receive.
• The Hospital of Central Connecticut Web site advance directives page, http://www.thocc.org/patients/advancedirectives.aspx, includes a downloadable file with forms and a summary of Connecticut’s advance directives law.