March 26, 2005

A living will? YES
By Florent Morellet

A living will is vital.

I have lived with HIV/AIDS for 18 years and witnessed many awful deaths of people who didn't have any instructions regarding medical treatment.

I have seen many terminally ill patients - whose medical situation is clear, whose death is imminent, whose treatment preferences are specific and identifiable - with fears they will be trapped in a dehumanizing health care system that ignores their wishes, imposes unwanted life-prolonging medical interventions and inadequately treats their pain. For many years, I gave away living wills at my restaurant, reminding diners they could forgo feeding tubes or ventilators.

The greatest fear expressed by the terminally ill is that complete strangers will make decisions for them. Many patients suffer the debilitating effects of chronic and incurable illnesses. Others have witnessed the prolonged suffering of loved ones whose minds died long before their bodies. Most of these individuals are adamant that they never want to be tube-fed. Those who live with chronic lung conditions know how it feels to have tubes connected to ventilators; they know they don't want to live that way.

In New York, family members do not have the right to make medical decisions for incapacitated loved ones without a living will or health-care proxy, a form that designates a preferred decision-maker.

Appointing a person as your health care agent is a good way to ensure that future medical interventions will reflect your wishes. But many people do not have a friend or family member who will assume the responsibilities of being a health care agent because they are elderly, socially isolated or have difficulty trusting that others will advocate for their choices.

Those who argue that living wills don't work and recommend they be abandoned in favor of health care proxies or durable powers of attorney must understand that living wills are often the only indication of a person's wishes. Without a living will you get a Terri Schiavo case, pitting family against family and judges against legislators, or you get loved ones against estranged relatives. Nobody wants that.

Morellet owns Restaurant Florent and is president of Compassion & Choices of New York, aiding terminally ill, mentally competent adults in end-of-life choices.