Retaining control over life decisions and maintaining dignity as the end of life approaches are top priorities for nearly everyone. These objectives can be achieved by good planning and the preparation of the proper directives under your state's laws. These safeguards have been greatly improved in many states in recent years. Still, experts say, few seniors have the right tools to make sure their end-of-life wishes are followed by family members and caregivers.
"There is some research out there that indicates that 90 to 95 percent of people think advance directives are a great idea," says Karen B. Hirschman, a research assistant professor who specializes in aging at the University of Pennsylvania. However, she adds, at most, 30 to 35 percent of people have actually developed such directives, and the total may well be less.
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"Part of that is that in our society, we don't want to have these conversations," Hirschman says. "We don't want to talk about death and dying. Putting together a plan to some people seems very morbid."
People often think of such matters only when they or a family member are seriously ill. But if a stroke, dementia, or another incapacitating event occurs, it may be too late. If people cannot make decisions for themselves and do not have directives or a power of attorney in place, decisions may be made for them that they would never have agreed with if they had been able to decide.
Michael A. Kirtland, an elder care attorney in Colorado Springs, Colo., says there are two ways to make sure your final wishes are followed: One is through legal documents, and the second is by communicating your wishes to anyone who might be involved in carrying out those wishes should you become incapacitated.
"Everybody ought to have either a will or revocable living trust," he says, with the preferred document depending largely on applicable state law. "Everybody ought to have a medical power of attorney ... and everybody should have a living will." Several elder care lawyers in other states interviewed by U.S. News were not always in favor of living wills. But they all advocated a power of attorney for healthcare reasons, also called a healthcare proxy in some states. And some attorneys said they also recommended a separate power of attorney for property matters in addition to a healthcare proxy.
"The most important document they can have is the power of attorney for healthcare," says Kristi Vetri, who practices in O'Fallon in downstate Illinois and also in South Dakota. In creating this directive, "you have to rationalize in your own mind, if you can't make these decisions, what is the quality of life that you expect when you wake up? Once you get that quality-of-life decision made, that goes into the quality of care you want."
"Then I tell them, now I want you to put down what you want your loved ones to know," she says. Vetri recommends that people record their final wishes, on video if they're comfortable. Other attorneys stressed that people should communicate their wishes broadly. "It does no good to do these legal documents if you then hide them in a safety deposit box or put them on a shelf," Kirtland says. "By telling your loved ones your feeling on the subject," he explains, "you are more likely to get the kind of medical treatment you would prefer if you were making the decision."
"A lot of these documents have different names in different states," says Wendy Sheinberg, who practices on Long Island. In New York, the power of attorney cannot be used to make medical choices, she says, so a healthcare proxy is needed. "The healthcare proxy becomes effective at the time when you are unable to make medical decisions for yourself." However, the proxy is not limited to end-of-life situations. A living will, by contrast, does speak to end of life decisions, she explains. As such, it may include very specific wishes in the event a patient's condition is terminal and they are unable to speak for themselves.
The healthcare proxy, or power of attorney, leaves more specific decisions in the hands of the healthcare agent or advocate who you designate as your proxy. For this reason, attorneys say, you should find someone (usually a family member) you trust who either agrees with your wishes, or at least promises to carry them out. Often, the agent is required to sign the healthcare proxy as well, to acknowledge an understanding and acceptance of his or her role.
"People have kind of an alarming tendency to believe after they've had a discussion with the spouse about their end-of-life preferences that their spouse understands what their end-of-life preferences is," says Sara M. Moorman, an assistant professor at Boston College's Department of Sociology and Institute on Aging. "It remains to be seen whether that is the case, and it probably isn't."
Moorman says seniors who confront end-of-life issues often discover that their wishes turn on whether their death is more about them or the loved ones they leave behind. "Do you care more about what happens to you?" she asks. "Or do you care more about what happens to your loved ones when you're about to die in a few days? It turns out that a lot of people's preferences for end of life have to do with not wanting to be a burden to somebody else."
The first, and often hardest, step toward creating final directives, experts agree, is having an extended conversation about how you want to be treated at the end of your life. Elder law attorneys say they may devote many hours to helping people not only select the right healthcare advocate but open up and seriously think about how they want to end their life. The discussion usually begins between spouses and spreads to other family members. But in the case of an older parent whose spouse has died, an adult child often triggers the discussion.
"They are very hard conversations to have, and they are important to have," Sheinberg says. "This can't be over the phone. You have to sit down with these people and say, 'I trust you, I love you, and I'd like you to be the person to make medical choices for me.' You have to really sit there and have that conversation." Family dynamics often make choosing the best advocate difficult, and a spouse or child simply may not agree with a person's final wishes or be able to carry them out when the time comes.
"Clients have weird thought processes," says Will Lucius, an elder law attorney who works at Paul A. Sturgul Law Offices in Hurley, Wisc. "Sometimes they will think child 'A' is too compassionate to make the tough health issues. Sometimes they go in order of age. Sometimes they try to balance them out."
Gregory S. French, an elder law attorney in Cincinnati, says he favors separate powers of attorney documents for healthcare and property because they require different attributes in an effective agent. "I often find the best advocate for care and wellbeing may not be the best person to manage finances, and vice versa," he says.
"The sad cases I see are people with debilitating conditions, and they wait and wait and wait," says Kirtland. "If people would come to me as their health issues are first discovered by their physicians ... then I can provide some help." If they wait until their decision-making abilities are compromised, however, they may not even be able to execute advance directives, and key decisions will be taken out of their hands.
"When their spouse is suffering from advanced dementia and they're looking at the door of a nursing home," Lucius notes, "they're not terribly interested in having a will or doing estate planning. They're trying to figure out how to come up with $7,000 a month to afford the nursing home."
"I don't think you can ironclad final-care wishes," sums up Howard Krooks, who practices elder law in Boca Raton, Fla. "I think you can state what you want but then [you have to] cross your fingers. It's a question of whether the healthcare providers are on board with what you say you want done." The medical profession's goal to preserve and extend life may still be in conflict with end-of-life wishes.
"I think that that is starting to get stripped away, and the concept of dying with dignity is starting to take hold," Krooks says. "But it's going to take some time."
Corrected 2/25/11: An earlier version of this article misspelled Howard Krooks' name.