End-of-Life Care Study: Disparity between values and actions

Nearly nine of 10 upstate New Yorkers surveyed said it is important to have someone close to them making medical care decisions on their behalf if they were to have an irreversible terminal condition and were unable to communicate or make decisions.
Yet, only 42 percent have designated a “health care proxy” to ensure their wishes are actually carried out.
These major findings are part of the most comprehensive survey on advance care planning values and actions ever done in upstate New York. The survey, conducted between March 6 and April 6, used a random sample of 2,000 adults, 18 and older, who reside in 39 upstate New York counties. Released recently by Excellus BlueCross BlueShield, the survey is located in the fact sheet section of the “Policy and Research” page at www.excellusbcbs.com.
“Formally designating a person as your health care proxy and talking about your wishes with your family are critically important for ensuring that your desires are carried out,” said Dr. Patricia Bomba, a national expert on advance care planning. She is Excellus BlueCross Blue Shield’s vice president and medical director for geriatrics.
A “living will,” the other major document that is part of advance care planning, specifies a patient’s wishes and guidelines for medical care if he or she develops an irreversible terminal condition. Eight of 10 survey respondents acknowledged the importance of a living will, but only 26 percent had completed their own.
“What is unusual about the results of this survey,” said Bomba, “is that the completion rates on health care proxies are higher in upstate New York regions than the 30 percent range we’ve seen in national surveys.”
Another key survey finding validates the important role physicians have influencing their patients to complete advance directives. Significant regional variations were shown in the response to the question, “Has your doctor ever talked to you about health care proxies and living wills?” On average across upstate New York, 35 percent of respondents said, “yes,” such a conversation had taken place.
“Studies have shown that physician counseling markedly increases the completion rate of advance directives,” Bomba explained.
Other highlights of the survey are:

Age is the most important factor affecting completion rates for health care proxies and living wills. As people grow older, especially after they reach age 65, they are much more likely to engage in advance care planning.

Women were more likely than men to report completing health care proxies (46 percent versus 36 percent) and living wills (28 percent versus 23 percent).

Adults with advanced college degrees were more likely to report completing a health care proxy form (49 percent versus 38 percent of those without any college education). The effect of education on completion rates, however, was not seen after the age of 55.

Among those who had completed advance directives, more than 90 percent have shared their wishes with their family and close friends.
The most common reasons given for not completing a health care proxy form included:

Don’t need it or don’t think it’s important (mentioned by 27 percent of those who didn’t complete the form).

Don’t know enough about it (21 percent).

Too young to be concerned about it (12 percent).

Don’t have the time or haven’t gotten around to it (11 percent).

Don’t know where to get the forms (5 percent).

Don’t know who to designate as my health care proxy (5 percent).

Uncomfortable thinking about such things (5 percent).
Advance care planning information is available on a community-based Web site, www.compassionandsupport.org, where there is a video about advance directives, forms to download, practical issues to consider, and guidelines for choosing a spokesperson.
“The most important thing we urge families to do is to talk with one another about their wishes,” Bomba said, “because that conversation can achieve a collective peace of mind.”