Most of us have probably said to a relative or friend, "If I'm in a coma and living on tubes, just pull the plug." But decision-making toward the end of life isn't that simple. Maybe another few days might bring you around — how long should your family wait? Often, the medical issue isn't even the "plug." What if you have advanced Alzheimer's and a doctor says you need triple-bypass heart surgery? Would you want your children to say yes or no?
If you're of sound mind when difficult medical questions arise, you can deal with them yourself. You're always in charge of your own treatment.
But if you're in a mental haze, even if only temporarily, someone will have to make decisions on your behalf. That "someone" will be glad for all the advance guidance you can give.
Good medical planning starts with a conversation, among family or friends, to help you clarify your thinking about care. How far do you want any treatments to go, and what minimal quality of life are you willing to accept? Free workbooks are now available online to help with the process, says Charles Sabatino, head of the American Bar Association's Commission on Law and Aging. A few to try: the Conversation Starter Kit, developed by the columnist Ellen Goodman; End-of-Life Decisions from Caring Connections, a national hospice organization; the ABA's comprehensive Consumer's Toolkit for Health Care Advance Planning; and AARP's Caregiving Resource Center.
To turn your preferences into a legal document, set them down in a properly witnessed living will (a type of advance directive). Your doctors are supposed to act in accordance with what you've said. AARP provides state-specific forms at aarp.org/advancedirectives. Caring Connections also provides the forms, as does the American Bar Association. In many states, forms can also be found on the website of the attorney general.
Read any online forms carefully. Some deal mainly with the "easy" questions, such as whether you want treatment ended if you're being kept alive mechanically. The better forms leave space for expressing your personal values. For example, what kinds of handicaps are you willing to live with? Would you want surgery if there's a high risk of brain damage? Are you okay with life in a nursing home?
It's especially helpful to say whether you'd want to be fed intravenously if your conditional is terminal. Medically, the answer may be "no." Dying people lose their ability to process nutrients, according to the National Hospice and Palliative Care Organization. Even providing water might add to discomfort by creating bloat. Well-meaning relatives need to know these things.
If you want to try everything that might keep you alive, it's also important to say so. Doctors generally won't provide treatment they think is futile but will go the last mile if that is your written wish and your family insists.
A living will is just the start. You also need to appoint someone as your health care proxy, to stand up for your wishes and make medical decisions that your will doesn't cover. If you have no close family members, choose a trustworthy friend. You also should sign what's known as a HIPAA release, giving your advocate access to your medical records.
You need to be especially careful in your planning if you have a degenerative disease, says Martin Shenkman, an attorney in Paramus, N.J., and author of Estate Planning for People with a Chronic Condition or Disability. Living will forms should be modified to include such things as experimental treatments outside the United States, if you want them. Breathing tubes might be fine if they help you maintain an acceptable life at home.
As the disease progresses, your choices might change, which you should also indicate in your living will. Be sure that your health care advocate has a deep understanding of your disease. He or she should live nearby, in case you have an attack and quick decisions are called for.
Religious people should talk with their family about anything in the will that might contravene their beliefs, Shenkman says. For example, some faiths expect doctors to take heroic measures that you might not want, or prohibit organ donation even if it helps advance research into your disease. Warn your family if you're taking these steps, and be sure that your health care advocate is on your side.
Most end-of-life decisions are made peaceably, without living wills being invoked, says elder-care attorney Gregory French of Cincinnati. They're invaluable, however, if siblings fight about "what Mom would want" (and the doctors duck).
When you make a regular will for your heirs, your attorney may provide his or her own versions of a living will and health care proxy. Modify them to suit your situation, then sign. As a last act, it's a classy one.
Jane Bryant Quinn is a personal finance expert and author of Making the Most of Your Money NOW.
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