People do not like to think about their own deaths. That is why so many die without a will, leaving children and family to clean up after them. That is why so many reach their last days without having created Advance Directives, leaving family and physicians sometimes at odds about their terminal care, such as respirators and feeding tubes. When Dorothy Seale-Brown, 78, of Colchester talks to individuals and groups about the value of Advance Directives, she emphasizes that these personal instructions for end-of-life care are about health care, not death and dying.

A former nurse-educator, Seale-Brown volunteers at Burlington's Heineberg Senior Center to offer personal counseling about Advance Directives, formerly called "living wills" or "durable powers of attorney for health care." The forms can be "a little bit awesome," she says. Most commonly, she says, people are confused about choosing an agent, the person authorized to interpret your wishes and make final decisions about your care. If you have a spouse, three sons, and two daughters, how do you choose among them? Seale-Brown is trained to listen and ask leading questions:  Who knows you best? Who will be guided by your values? Who will be comfortable making hard decisions on your behalf?  Who will be the best negotiator with your physicians?

Advance Directives indicate your wishes for treatment. You can choose to sustain life as long as possible, regardless of your condition or awareness. Or you can limit treatment in various ways: refusing intravenous feeding, for example. Or you can limit treatment under various conditions: if you are unconscious, for example, and not expected to recover, or if you have a very short time to live. Do you want pain medication even though it might have the unintended consequence of hastening your death?  Do you want hospice care? Do you want to die at home?

You can also give instructions about organ and tissue donation and your wishes for the disposition of your body after death.

Recently, Seale-Brown added another part to her counsels about Advance Directives. She advises that besides making sure that your family, physician, and local hospital know your wishes for final care, you should send your Advance Directive to the new Vermont Advance Directive Registry. Mandated by the Vermont legislature in 2005 and developed by the state Health Department, the on-line VADR makes your Advance Directives immediately available to health care providers who need to know them. Advance Directives are useless, says Seale-Brown, if they are misplaced, on a desk at home, or in a safe deposit box and cannot be read by health professionals when needed.

VADR is free of charge, simple to use, and protects your privacy. All you do is make out an Advance Directive or find yours and update it, if you wish, share it with family and your agent, and mail a clear copy along with a signed registration agreement to the Registry. AD forms, the registration agreement, and the Registry address can be found on the Health Department website. Your papers will be scanned into an electronic database, available to health care providers who have registered. Within ten days, you will receive a confirmation packet in the mail with a wallet ID card showing your personal identifier number along with small stickers with VADR's web address and toll-free number. Once a year, VADR will contact you by mail to remind you to let them know of any changes in your wishes or your agent's contact information.

State law requires that all health care and related providers in Vermont have staff registered for access to VADR – including physicians, hospitals, home health agencies, nursing homes, hospice, funeral directors, and cemetery officials. If you fall ill out-of-state, your health care provider there can use a toll-free number to find out your wishes for treatment.

According to Bill Apao, coordinating VADR at the health department, over 700 people, so far, have signed up for VADR. Some 80,000 – 100,000 Vermonters have advance directives estimates John Campbell, executive director of the Vermont Ethics Network. "It would be wonderful," he says," if even half these people registered their documents with VADR."   

"We all think that we are going to live forever," says Sylvia Smith, 93, of South Burlington. "But obviously, that's wrong." Although she lives independently in her own home and is active in community affairs, Smith is also paying attention to last things. Between working with AARP committees, volunteering with the Vermont Ethics Network, or reading a new translation of the Aeneid, recently she has updated her will to assure low-price concert tickets for music students, arranged for her father's antique piano to be used at UVM, and shipped boxes of old clothes, blankets, and dishes to the Salvation Army. She has also sent her Advance Directive to VADR.

"I know people whose families don't know their last wishes," Smith says. "I want to make sure that my wishes are carried out. It's better to have something in writing so doctors can know what you want and know where to find it."

Find out more about Advance Directives and the Vermont Registry

• Go to the Vermont Department of Health website: www.healthvermont.gov/VADR
• Attend a workshop about Advance Directives presented by the Vermont Ethics Network, 802-828-2909, www.vtethicsnetwork.org
  • September 27, 3 pm, Brownell Public Library, Essex Junction
  • September 27, 6:30 pm, Rawson Memorial Library, Jericho
  • October 2, 12:30 pm, Winooski Senior Center
  • October 3, 2 pm, Georgia Public Library
  • October 17, 2 pm, Decker Towers, St. Paul Street, Burlington
  • November 15, 5:30 pm, Fairfax Community Library
• Get personal counseling about Advance Directives through the Vermont Ethics Network or the Madison Deane Initiative, Visiting Nurses Association, 802-860-4419.

Barbara Leitenberg writes on senior issues for the Champlain Valley Agency on Aging. This article originally appeared in the Burlington Free Press.