Despite well-publicized cases like that of Terri Schiavo, most Americans still do not have “advance directives” that give caregivers instructions on the kind of care they would like to receive should they become terminally ill or permanently unconscious.
This should not be a surprise, according to a new study published in the January 17, 2011, issue of the Annals of Internal Medicine by researchers who looked at advance directive laws nationwide. Each state has its own laws on advance directives, but the researchers found that all states erect barriers that make it difficult or impossible for individuals — particularly the isolated elderly and terminally ill — to complete advance directives.
“Advance directives” is an umbrella term for documents that allow individuals to communicate their end-of-life wishes if they are unable to do so themselves. Also known as medical directives, these documents typically include a “living will” that gives instructions regarding treatment if the individual becomes terminally ill or is in a persistent vegetative state, and the designation of a health care proxy (also called a health care power of attorney), someone to speak on the individual’s behalf and ensure that her wishes will be carried out.
The new study, “Lost in Translation: The Unintended Consequences of Advance Directive Law on Clinical Care,” details a number of roadblocks preventing the wider use of advance directives. For example, researchers found that the advance directive documents in use in all the states are written above a 12th-grade reading level, when 40 percent of Americans can read no higher than an 8th grade level.
The researchers also found that 35 states do not allow oral advance directives and 48 states require witness signatures, a notary public, or both. Both restrictions effectively guarantee that many isolated elderly individuals will not let their end-of-life wishes be known, they note. And the only people some terminally ill patients trust are health providers and social workers, but state laws ban such individuals from serving as health care proxies.
In addition, many gay or unmarried patients may be without legally valid people they can turn to as health care decision makers. Forty states do not allow same-sex or domestic partners to be the default health care proxy if an individual hasn’t chosen one, as would be the case for heterosexual spouses.
The researchers’ recommendations include improving document readability, allowing oral advance directives, eliminating witness or notary requirements, and removing bans on certain individuals serving as proxies.
To read an abstract of the study, click here. Among the study’s authors is Charles P. Sabatino, director of the American Bar Association Commission on Law and Aging.
For a Reuters article on the study, click here.
For more on health care decisions, click here.