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It is customary for New Yorkers to express their views freely on just about everything, from the proposed Jets stadium to the much-maligned blueberry bagel. But despite the sobering example of Terri Schiavo, when it comes to the topic of our own end-of-life choices, most of us keep our thoughts to ourselves.
If we all knew what Dr. Diane Meier knows, we would drop our bagels, whatever the flavor, and start a conversation on the subject. Meier, a geriatrician who directs the Hertzberg Palliative Care Institute at Mount Sinai Medical Center in Manhattan, faces end-of-life issues daily. But even she was stunned by the fate of a colleague, a vigorous physician who suffered a sudden brain hemorrhage that left him comatose and attached to a ventilator and feeding tube. “His brain was gone,” says Dr. Meier. His family was certain he would not have wanted to linger in this condition, and his fellow doctors agreed. But with no written instructions and no one who recalled speaking with him about his wishes, the hospital staff was compelled by New York state’s tough laws to keep their friend and colleague alive.
Many people do not realize the urgency of leaving instructions – commonly called “advance medical directives” – because they assume spouses or other family members will automatically have authority to make medical decisions for them should the need arise. This is true in most states, but not in New York, says Carl H. Coleman, associate professor of law at Seton Hall Law School and former executive director of the New York State Task Force on Life and the Law. JoAnna Shaw, a Manhattan choreographer, learned this the hard way: With no directive, she could not prevent physicians from keeping her unconscious father on life support for a year, though she knew this to be contrary to his wishes.
Advance directives are also crucial, says Professor Coleman, because New York is one of only two states (the other is Missouri) where the courts have ruled that stopping life-sustaining measures requires “clear and convincing proof” the patient would not have wanted them. Hospitals are legally bound to follow this standard, the highest burden of proof in civil law. This is why Dr. Meier, struck by the emotional toll on families lacking sufficient guidance from a loved one to meet this test, sees directives as “not really optional.”
The good news is that putting advance directives in place is surprisingly easy. There are two basic components: a health care proxy and a living will, each usually quite brief. A health care proxy, recognized in some form in every state, lets an individual authorize a “health care agent” to make medical decisions on his or her behalf. The New York version is a simple document, but has a few specific requirements; for example, it must be witnessed by two people, neither of them the agent.
Although some parents would prefer their adult children to make tough decisions jointly, only one health care agent can be appointed. Arlene Harris, special counsel at the law firm Kaye Scholer, New York, advises her clients to designate an alternate in case the agent is incapacitated, giving the example of spouses who name each other and then suffer injuries in the same car crash. And because of federal privacy laws, Ms. Harris adds, it is vital to give the agent permission to view all medical records. A health care agent is not empowered to pay medical bills; this requires a separate power of attorney giving the agent, or someone else, the right to make financial and legal decisions.
So here is the lesson: The best way for New Yorkers to ensure that their end-of-life choices will be honored, and to ease the burden on their families, is just to do what comes naturally; that is, to make their views known.
Many people assume family members will have authority to make medical decisions for them should the need arise.
Choosing a health care agent takes thought. “It should be somebody that will have the courage to carry out your wishes,” says Dr. Kenneth Prager, chairman of the Medical Ethics Committee at Columbia University Medical Center. A spouse is not always the best choice: “They sometimes have too much of an emotional tie, or need to move on with their lives. says Daniel F. O’Connell, managing partner of the law firm Drinker Biddle and former chair of the New Jersey Bioethics Commission.
Whoever the agent is, he or she should be imbued with a deep understanding of the individual’s desires, which is where the living will comes in. Its purpose is to record one’s feelings about life-prolonging treatment. “It’s essentially the right to pre-ordain what doctors can and cannot do,” says Jonathan D. Weiner, a Princeton, N.J., partner with the law firm Fox Rothschild. However, Dr. Prager, the Columbia ethicist, cautions that drafting a living will that truly “captures the spirit” of one’s wishes can be tricky. He emphasizes that even if a living will is in place, “the ideal situation is when a person has discussed his wishes at some length” with the health care agent. This is true even for those who would like every measure taken to prolong their lives.
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Wendy Fried is a lawyer turned freelance journalist in Manhattan.