The Patient Self Determination Act and Trends in Advance Directives

MAY 4, 2015 VOLUME 22 NUMBER 17

Last month the U.S. Government Accountability Office released a short report on the use of advance directives in hospitals, nursing homes and other health care facilities. The report, requested by members of the Senate Committee on Commerce, Science, and Transportation, addressed the experience with health care powers of attorney, living wills and other advance directives. It makes interesting reading — or at least it is interesting to policy wonks concerned about individual autonomy and self-determination.

To review: the federal Patient Self Determination Act was adopted in 1990. It requires each state to summarize its state laws on advance directives (and to make that summary publicly available). It also requires hospitals, nursing homes, hospices, home health agencies, health maintenance organizations, and Medicare Advantage providers to inform patients about advance directives and to ask if they understand the concepts. It does not explicitly require health care providers to either ask for advance directives or to require any patients to complete them (in fact, the law prohibits any provider from requiring advance directives), but the thinking when the law was passed was that advance directives would become much more common.

Although the federal law does not require it, many states responded by not only summarizing their laws but also providing simple forms for patients to complete. And, though the law does not require this step either, many health care providers responded by offering those simplified forms to patients on admission or periodic review.

How well has the federal law worked in its quarter-century of existence? The study doesn’t really answer that question, though it does give some data points to assess changes in the medical community and care standards. At the time of adoption of the Patient Self Determination Act, activists estimated that perhaps 20% of patients had executed an advance directive. The study finds that almost half of adults over age 40 have now signed a living will or health care power of attorney. That suggests that something more than twice as many patients have done at least some health care planning — though it is unclear whether that is the result of the federal law or changing public knowledge and preferences (or both things).

Perhaps more interestingly, the study found wide disparities by type of care facility, medical condition, age, race, income level, and education level. Even gender made a significant difference, with women signing advance directives about 5% more frequently than men.

Interestingly, though, only a handful of the demographic categories reviewed in the GAO report had more than 50% compliance. Nursing home residents had signed advance directives about 55% of the time (up 10% from the previous decade). 60-year-olds had perhaps the most vigorous increase in signature rates, moving from just under half having signed a decade ago to almost three out of four today.

Interested in some of the other categories? You can read the report yourself, as it is available online. But here are some of the more interesting items we extracted from its analysis:

  • Unsurprisingly, people with chronic illness are about 10% more likely to have signed an advance directive. We say “unsurprisingly,” but perhaps it is surprising that the gap is not even wider, since only about one-third of those with chronic illness have signed.
  • People over age 65 are about twice as likely to have signed advance directives as their younger relatives. Adults under age 35 weigh in at only about 10%.
  • “White” Americans are much more likely to have signed advance directives than are African-Americans, Latinos or other races or ethnic groups. (Why quotation marks around “white”? Well, wouldn’t “pink” be more accurate?)
  • There is a clear relationship between income (each $25,000 increase in annual income seems to correspond with a 3-5% increase in signatures) and education (each degree increases the signature rate by at least 5%).

What does this information suggest to us about the use of advance directives? We have a number of ideas — occasioned more by our real-world experience than empirical evidence:

  1. You could sign an advance directive, right now. If you live in Arizona, there are plenty of resources to make it easy. Want to find Arizona forms? The Arizona Attorney General’s office has had perfectly acceptable forms online for several decades. Over time the detail, and the explanation, has grown the file to more than 20 pages — but don’t be intimidated. Actually filling out and signing the forms is pretty straightforward, and you could complete it today. Based on the statistics in the GAO report, there’s about a 50% likelihood that you’ll increase the percentage of coverage (that is, there’s about an even chance you haven’t done this yet).
  2. Do you already have an advance directive? No? Are you sure? We’re surprised how often long-time clients come back to see us to update their estate plans, and, “oh, by the way, I need to sign one of those health care powers of attorney this time.” Clients are often surprised that they’ve had perfectly good advance directives for years. If you’ve met with a lawyer any time in the past thirty years, you probably have gotten advance directives with your other estate planning documents.
  3. Sometimes people vaguely recall signing a health care power of attorney or a living will, but can’t think of where the documents are now. Wouldn’t it be nice if there was an easy way to keep these documents available online, and maybe just carry a wallet card with the information (for emergencies)? Good news! You can do exactly that — at least if you live in Arizona. We are one of about a dozen states operating a state registry for advance directives; it’s easy, free and helps keep track of your documents.

 

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