Elizabeth O’Brien’s Retire Well: Your ‘living will’: What happens if you change your mind?

Many folks say they don’t want to live with the infirmities they see their loved ones suffer in old age. When it’s my turn, they’ll tell anyone who will listen, just put me out of my misery.

Here’s the thing, though: When a late-life health crisis does finally arrive, “I don’t know many people in the middle of it who say, ‘Take me out back and shoot me,’” said Dr. Sharon Brangman, chief of geriatrics at Upstate Medical University in Syracuse, N.Y. “They want to know, what are my chances?”

Many people make so-called advance directives when they’re in their prime, outlining the medical interventions they would want or refuse in situations when they’re not able to speak for themselves. But after a serious medical diagnosis, or after decades have passed, those directives don’t always still match the wishes of the people who wrote them.

There’s been much talk recently about overly aggressive end-of-life treatment, when the medical establishment fails to honor a person’s wishes to die gently, often at home. This problem exacts a huge emotional and financial toll on families and the health system overall. (In 2011, about 28% of all Medicare spending, or about $ 170 billion, was spent on patients’ final six months of life, according to a 2013 analysis by the Medicare NewsGroup.)

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But there’s also a flip side, medical professionals say. Interventions that people couldn’t imagine in their prime sometimes seem desirable when they’re infirm. Everyone who files an advance directive away in a cabinet—and let’s face it, that’s most of us, if we had the foresight to create one at all—should remember this: “Advance care planning is not a moment in time,” said Dr. Russell Portenoy, chief medical officer of MJHS Hospice in New York City. “It’s a process.”

Getting started

The process begins, of course, with creating an advance directive for the first time. While terminology varies by state, this term usually refers to two documents, a living will and a medical power of attorney, also known as a health-care proxy. The former outlines what kind of medical care, especially life-sustaining treatments, a person would want if she can no longer communicate her wishes; the latter designates a person, known as an agent, to make medical decisions for the person who can no longer make them for herself.

Just over one-quarter of U.S. adults aged 18 and older has an advice directive, according to a study published early this year in the American Journal of Preventative Medicine. While older people were more likely than younger ones to have one in place, 32% of respondents age 55 and over did not have an advance directive. Everyone age 18 and over needs one: Infirmities strike mainly the old, but accidents and illness strike people of all ages.

Once the directive is made, people should revisit it periodically—and especially after any serious medical diagnosis—to see if the document still represents their best thinking. MyDirectives.com is a website that offers consumers a free way to create what the company calls a Universal Advance Digital Directive—essentially, a cloud-based living will, health-care proxy and organ-donor form that is legal in all states.

Consumers can log in to the site any time to review and change their responses to a series of questions about their priorities and wishes for care. Questions include, “If your health ever deteriorates due to a terminal illness, and your doctors believe you will not be able to interact meaningfully with your family, friends or surroundings, which of the following statements best describes what you’d like to tell them?”

One of the multiple-choice responses reads, “I prefer that they stop all life-sustaining treatments and let me die as gently as possible. I realize that I would not receive life-sustaining treatments including but not limited to breathing machines, blood transfusions, dialysis, heart machines and IV drugs to keep my heart working. Also, I realize that cardiopulmonary resuscitation would not be attempted, and I would be allowed to die naturally.” Another choice requests continuing life-sustaining treatments, while the third response reads, “neither of the choices reflects my preference” and leaves a blank space for elaboration.

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