Planning Your End-of-Life Care

Why filling out the paperwork isn’t enough.

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Talking about death with your loved ones can be awkward at best and painful at worst. But discussing medical directives—legal documents that specify your treatment preferences—is important because they ensure that medical care is executed in the way you want it to be, even if you can't speak for yourself. Making your wishes clear also prevents your spouse and children from having to make heart-wrenching medical decisions about how long to continue care. Here are some tips for communicating your end-of-life wishes:

Fill out the forms. In the absence of legal documents, family members can be left to make excruciating medical choices. "It tortures families to not know what to do and feel like they are making life-or-death decisions," says Ira Byock, director of palliative medicine at the Dartmouth-Hitchcock Medical Center and author of the book Dying Well. "Having that written down alleviates a lot of stress that families feel." Putting your wishes in writing using advance medical directives is a great way to organize your thoughts and make your desires clear.

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A living will includes instructions explaining the types of healthcare you want or don't want under various circumstances. It's also a good idea to designate a healthcare proxy or durable healthcare power of attorney that gives the person you select the legal right to make medical decisions for you when you no longer can. Only about a third of Americans have a living will (36 percent). And 37 percent have identified a healthcare proxy or drawn up a durable power of attorney for healthcare, according to an AARP poll of adults age 35 and older in 2008.

Not surprisingly, Americans ages 60 and older are more likely to fill out these forms than those in their 40s and 50s. "It's good to express your wishes when you are capable of doing that because once you're not, you can easily be at the mercy of the system or your loved ones, who may not make the decision you would even though the system and your loved ones have the best of intentions," says David Feldman, assistant professor of counseling psychology at Santa Clara University and coauthor of The End-of-Life Handbook: A Compassionate Guide to Connecting with and Caring for a Dying Loved One. Laws governing advance directives vary by state. The National Hospice and Palliative Care Organization maintains a list of state-specific forms and requirements. But one state's advance directive does not always work in another state, so it's best to fill out advance directives for all the states where you spend a significant amount of time.

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Distribute the paperwork. When Jan Warner, author of Next Steps: A Practical Guide to Planning for the Best Half of Your Life, was diagnosed with cancer a year ago, he executed a healthcare directive and gave a copy to each of his five children. "I sent it out to them and I said, 'This is what I want to do, and I expect support,' " Warner says. Simply filling out the forms and stuffing them in a drawer or safe deposit box isn't enough. "Give one to all of the people who may be caring for you: family members, friends, doctors, hospitals that you may be at, your lawyer," says Feldman. "Put it by your bed, displayed on the wall, or on the nightstand. It's most likely to be honored when people know about it." Byock has given copies of his advance directives to several doctors and his wife, sister, and daughter, and he's posted it in his electronic medical record. He even made a PDF.

Have a sit-down. "We are living in a culture in the U.S. in which it is taboo to talk about death and serious illness, and that makes these conversations hard because we feel like it's inappropriate and we feel like we are going to offend people," says Feldman. A majority of parents (63 percent) ages 65 and older say that they have talked with their children about how to handle their medical care if and when they can no longer make their own decisions, and about half (55 percent) have discussed what to do if they can no longer live independently, according to a June Pew Research Center survey. Parents generally initiated these conversations, and mothers and daughters were much more likely to have had a discussion about end-of-life care than men. "Give a warning to whomever you want to talk to about this stuff rather than springing it on the person, so they can be prepared," Feldman says. "Schedule a time—at least an hour is ample time—and make sure you have it in a comfortable setting." You'll also want to discuss your end-of-life wishes with your physician. "The American mind-set toward dying is, 'I don't want to think about it,' and so we don't, and when it happens, we are unprepared, which makes it all the harder," says Byock. "It's in everyone's best interest as part of health maintenance to talk about these issues within your family and with your physician as part of normal healthcare."