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Where is That Advance Care Directive? New York Times

By Paula Span
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Nancy Wagner, a social worker at Monmouth Medical Center in Long Branch, N.J., encounters this frustration at least once a week: A patient arrives in the emergency room and tells the inquiring staff that yes, she has indeed prepared and signed an advance directive. But, well, she doesn’t have it with her.

On one recent Monday, it happened twice.

First, an 82-year-old woman, feeling numbness in her arm, came in fearing a stroke and underwent a raft of tests. Her son, who accompanied her, was her health care proxy, designated to make decisions for her if she couldn’t make her own — but where was the document saying so? “It’s locked up in the safe deposit box along with my will,” she tol Ms. Wagner.

“Luckily, she was alert and oriented and could talk to me,” said Ms. Wagner, who quickly arranged for the woman to fil out a new form naming her son. But what if she’d been unconscious or incoherent?

On the same day, a 67-year-old man came in with pneumonia. He, too, had an advance directive — stored safely at his attorney’s office in New York City. “I’m trying to get in touch with his lawyer,” said Ms. Wagner, who is required to make three attempts to obtain an advance directive if one exists. She was hoping the firm could fax a copy.

A real crisis developed last month, she told me, involving a 75-year-old nursing home resident with dementia who came to the hospital in serious decline. (Whether he should have been in the ER at all is another question.)

A friend had his financial power of attorney and thought she was also his health care proxy, but her copy of that document was unsigned. At least it gave his lawyer’s name, so Ms. Wagner could call the law office.

The friend was not the man’s health care proxy, it turned out; he had appointed his brother and sister-in-law in

Georgia to make decisions for him. His brother had since died, but the law office could supply the sister-in-law’s phone number so Ms. Wagner could call and ask her what to do. By then, the ICU staff was asking whether to put the patient on a ventilator. But the firm couldn’t fax a copy of the directive, because the man’s lawyer carried it around with him in a briefcase in his car (you wonder if the American Bar Association would approve) and he was out of the office, taking a deposition.

“It was a nightmare,” Ms. Wagner said. Hours passed before the lawyer could return her call, and even then he was on the road and not near a fax machine.

Most of the time, patients who have advance directives — somewhere — and don’t bring them to the hospital have simply left them at home. But lawyers’ offices and safe deposit boxes are also popular locations. All of which are useless if a person can’t direct his own care, or if family members are at odds, or they are rummaging through drawers and files looking for the paperwork while the ER staff stands by.

Another social worker told me she’d seen instances in which the documents showed that the person who assumed he was a patient’s appointed decision-maker, and was acting in that capacity, wasn’t the designated health care proxy at all.

It makes Ms. Wagner a little crazy, frankly. Most Americans don’t have advance directives at all. But these patients did what everyone, including me, is constantly urging them to do. “They’ve struggled with this difficult conversation, they’ve come to a decision, and then they just don’t bring the document with them,” Ms. Wagner lamented.

The moral of this story is clear, I trust. As a hospital social worker, Ms. Wagner wishes people with advance directives would, at minimum, supply copies to their primary care physicians and to the individuals named as their health care decision-makers, as well as keep copies close at hand themselves.

But it makes sense to broaden the distribution and give them to other doctors as well — your cardiologist, your neurologist — and to additional family members or friends. The more copies there are in circulation, the better the odds that one will materialize at the hospital when you need it.


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