Caring Advocates Blog & News

By: STANLEY A. TERMAN - Commentary

How can a patient with Alzheimer's disease say: "It's time"?Robert Hammerman was the longest-serving judge on Maryland's Supreme Court. He ended his own life by a gunshot to his chest. He died across the street from the nursing home where he feared unbearable confinement. He suffered from early dementia and feared prolonged indignity and total dependency. His mother and two close friends were institutionalized, one for 10 years.

Advanced dementia is our greatest end-of-life fear. Very few of us want to exist at a cost approaching $100,000 a year if we have no potential for meaningful human interaction, if we must be strapped down to "accept" medical treatment and to prevent us pulling out feeding tubes, or if we eat and drink only when orderlies force puree through clenched teeth as we try to turn away.

Unnecessary end-of-life pain and suffering is our second greatest fear. For Californians, a potential solution seems distant. Recently, state Sen. Joe Dunn cast the deciding committee vote to prevent California legislators from considering a law to decriminalize physician aid in dying for terminally ill patients. Just announced: He was selected to head the California Medical Association. Although two out of three Californians want to legalize physician aid in dying, strong opposition to changing the law lies ahead.For patients with Alzheimer's and related dementias, changing the law is neither necessary nor sufficient. Oregon's Death With Dignity Act "helps" only about three dozen people a year because patients must be terminally ill and competent when they decide to die. In contrast, thousands suffer from end-stage dementia in that state. In the U.S., they number in the millions and will increase threefold in the next three decades.Yet there is a legal alternative: Voluntary Refusal of Food and Fluid. Although often mischaracterized as "starvation," people really die from "dehydration," which is peaceful. Good mouth care reduces thirst, and ketones from metabolism prevent hunger during the few days to two weeks of the dying process.Those worried about suffering from dementia someday could consider Refusal of Food and Fluid by Proxy. They can legally authorize a surrogate decision-maker to refuse food and fluid on their behalf. For success, their proxy directive must be strategic, to prevent others' challenges. (Proxy directives are generally stronger than living wills.)When Voluntary Refusal of Food and Fluid is not considered, the consequences can be severe: Loved ones may be imprisoned for attempted murder, professionals may lose their licenses, and people in early dementia (like Judge Hammerman) may decide not to risk living longer.

Fearing dementia will worsen so they no can longer act, their premature dying is the greatest tragedy of all. That's why education about Refusal of Food and Fluid ---- for both competent patients and to plan for possible dementia ---- is so important.ÝBut who will be your proxy? Close relatives sometimes find it hard to make the decisions you want or are not able or available when that time comes. People could form groups and agree to serve as each other's proxies if their reluctance to assume the awesome role of making life-or-death decisions was lessened by the ability to turn to professionals for advice and support.

Stanley A. Terman, Ph.D., M.D., is a Carlsbad psychiatrist who leads Caring Advocates, a nonprofit organization that organizes Trusting Circles -- groups whose members consider serving as each other's proxies. He will lead a free two-hour workshop on this subject on Monday, at the Carlsbad City Library on Dove Lane. He will discuss proxy directives, Voluntary Refusal of Food and Fluid and forming Trusting Circles. For more information, call (800) 64 PEACE, or visit www.CaringAdvocates.org.

North County Times/The Californian - Community Forums

http://www.nctimes.com/articles/2006/11/04/opinion/commentary/19_17_5111_3_06.txt