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Determining how many people have advance care directives

How many Americans have an advance care directive? It depends on which, if any, study you want to believe. Given the broad range of study answers, it may be time for those asking the question to get more specific so more meaningful data can be collected.

In 2005, a Pew Research telephone survey found that 29% of respondents had such a directive.

In 2007, based on conversations with survivors of 1,587 people who died that year, 71% said the deceased had a directive.

In 2013, data analyzed from a mail survey of nearly 8,000 adults in 2009 and 2010 by a marketing and public relations firm that licenses its data to the Centers for Disease Control and Prevention found that 26% had an advance directive.

According to an article in the April 2014 edition of the Journal of the American Geriatrics Society, based on a study of more than 6,100 adults age 60 and older who died between 2000 and 2010, there had been a significant increase in the rates of completion of advance directives, up from 47% in 2000 to 72% in 2010. But such percentages seem high in light of what two practitioners say.

Dr. Nancy Girard, a family physician in solo practice in Alexandria Bay, N.Y., has enthusiastically embraced a Web-based tool and online registry called eMOLST. It was built to create, store and exchange Medical Orders for Life Sustaining Treatment, a protocol primarily designed for patients who are terminally ill. The tool was developed for Excellus Blue Cross and Blue Shield and launched by the health plan in mid-2011.

In October, Excellus told Girard she had already filed forms on about 300 individuals. That's only about 15% of her 2,000 or so patients.

Dr. Robert Fine, clinical director of the office of clinical ethics and palliative care at Baylor Scott and White, Dallas, said his panel has been reduced to about 200 patients, many of whom are elderly and frail. Fine said 80% of them have directives. He didn't suggest his percentage was typical, however.

Fine speaks frequently to fellow clinicians on end-of-life care. And he often asks, by a show of hands in the room, how many people—who by being there have demonstrated an interest in end-of-life issues—have directives themselves. Invariably, Fine said, only a few hands are raised.

The situation may be similar to the many surveys in the early 2000s trying to measure the market penetration of electronic health-record systems. The results varied widely, probably because questionnaires simply asked, “Do you have an EHR?”

Then, in 2005, the Office of the National Coordinator for Health Information Technology at HHS issued a contract to a consortium of healthcare organizations to develop a standardized methodology to measure the rate of adoption of EHRs among physicians and hospitals. The consortium came up with more than a dozen important elements of what a “fully functional” EHR should have.

National Center for Health Statistics added to its annual survey a list of EHR functions similar to those developed by the group. So armed, the NCHS surveyors then asked doctors, “Does your EHR have this, this and this?”

First-year results from the NCHS survey using the detailed questions were released in 2006 and were startling.

When the NCHS asked physicians in the same way as before—basically, “Do you have an EHR?”—29% indicated they did. After totaling answers to the all the questions about specific EHR functions, only 3% said they had a “fully functional” EHR.

The same lack of specificity could be what's distorting results from surveys about advance care directives.

Follow Joseph Conn on Twitter: @MHJConn






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